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Livable Communities for Adults with Disabilities
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
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This report is also available in alternative formats
and on the award-winning National Council on Disability (NCD)
Web site (www.ncd.gov).
Publication date: December 2, 2004
The views contained in this report
do not necessarily represent those of the Administration as this
and all NCD documents are not subject to the A-19 Executive Branch
review process.
NATIONAL COUNCIL ON DISABILITY
An independent federal agency working with the
President and Congress to increase the inclusion, independence,
and empowerment of all Americans with disabilities.
December 2, 2004
The President
The White House Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability
(NCD), I am very pleased to submit a report entitled Livable Communities
for Adults with Disabilities. The report was developed with the
advice of a consumer advisory committee from around the country.
The advances in America's policy and programs on
behalf of citizens with disabilities have been inspiring. Notwithstanding
the individual social policy and legislative achievements of the
past 50 years on behalf of Americans with disabilities, however,
we need to establish a cohesive public policy agenda in the coming
years. We need a common vision, with clear objectives, that speaks
to the strength of our commitment to our citizens and the quality
of their lives, and one that addresses the challenges facing us
in the years ahead.
Communities in the United States are faced with
increasingly difficult choices and decisions about how to grow,
plan for change, and improve the quality of life for adults with
disabilities as well as elders who may develop disabilities as
they grow older. People are living longer lives today than ever
before and the population of people aged 65 and older is growing
rapidly. One in five people in the United States will be over
the age of 65 by 2030. Currently, more than 4.7 million Americans
aged 65 years or older have a sensory disability involving sight
or hearing, and more than 6.7 million have difficulty going outside
the home. As the population of elders grows, it is possible that
the number of people aged 65 and older with disabilities will
also grow, particularly those 75 years of age and older.
Livable Communities for Adults with Disabilitiesoffers
a compelling vision for our nation. It articulates the elements
of a livable community, highlights existing examples of livable
communities in the United States today, which can serve as models
for others, and describes how communities can develop and sustain
their livability features.
Our recommendations are in line with the focus of
your New Freedom Initiative's emphasis on community integration,
participation, and enhancement of the independence of people with
disabilities at home, at work, and throughout the course of their
daily lives. NCD stands ready to work with you and stakeholders
inside and outside the government to see that the agenda set out
in the attached report is implemented.
Sincerely,
Lex Frieden Chairperson National Council on Disability
(The same letter of transmittal was sent to the
President Pro Tempore of the U.S. Senate and the Speaker of the
U.S. House of Representatives.)
1331 F Street, NW „ Suite 850 „ Washington,
DC 20004 202-272-2004 Voice „ 202-272-2074 TTY „ 202-272-2022
Fax „ www.ncd.gov
National Council on Disability Members
and Staff
Members
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Analyst
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Cler
Acknowledgement
The National Council on Disability deeply appreciates
the groundbreaking research in the development of this report
by Penny Feldman, Mia Oberlink, Michal Gursen, and their colleagues
at the Visiting Nurse Service of New York, Center for Home Care
Policy and Research (http://www.vnsny.org/research).
Contents
Executive Summary
Introduction
Framework of a Livable Community for Adults with
Disabilities
Strategies and Policy Levers
Lessons Learned and Recommendations
Provide affordable, appropriate, accessible housing
Ensure accessible, affordable, reliable, safe transportation
Adjust the physical environment for inclusiveness
and accessibility
Provide work, volunteer, and education opportunities
Ensure access to key health and support services
Encourage participation in civic, cultural, social,
and recreational activities
Chapter 1: Elements of Livable
Communities for Adults with Disabilities
An Introduction to Mr. Clyde Boger
Population Growing Older
Loss of Independence: A Common Concern
Making Lifelong Independence Possible
Adults with Disabilities Speak Out
The Livable Community for Adults with Disabilities
Framework
Chapter 2: Provide Affordable,
Appropriate, Accessible Housing
Chapter 3: Ensure Accessible,
Affordable, Reliable, Safe Transportation
Coordinated Transportation Systems
Job Access and Reverse Commute (JARC) Programs
Demand-Response Transit Options: Expansion of Accessible
Taxis
Tax Support for Improved Transit
Advanced Technology to Improve the "Navigability"
of Public Transit
Chapter 4: djust the Physical
Environment for Inclusiveness and Accessibility
Chapter 5: Provide Work, Volunteer,
and Education Opportunities
Tax Incentives
New Freedom
The TTW and Self-Sufficiency Program
Job Accommodation Network
Computer/Electronic Accommodations Program
Chapter 6: Ensure Access to
Key Health and Support Services
Chapter 7: Encourage Participation in Civic, Cultural,
Social, and Recreational Activities
Chapter 8: Putting It All Together
Strategies and Policy Levers to Affect Change
Lessons Learned and Recommendations
Provide affordable, appropriate, accessible housing
Ensure accessible, affordable, reliable, safe transportation
Adjust the physical environment for inclusiveness
and accessibility
Provide work, volunteer, and education opportunities
Ensure access to key health and support services
Encourage participation in civic, cultural, social,
and recreational activities
Strategic Plan 2000: Making San
Mateo County Livable for Older Adults and Adults with Disabilities
Introduction
Background
The Process of Developing a Strategic Plan
Strategic Plan 2000: Goals, Objectives, and Progress
Provide affordable, appropriate, accessible housing
Ensure accessible, affordable, reliable, safe transportation
Adjust the physical environment for inclusiveness
and accessibility
Provide work, volunteer, and education opportunities
Ensure access to key health and support services
Encourage participation in civic, cultural, social,
and recreational activities
Epilogue: Vision of a Livable
Community
Resources
Appendix:
Mission of the National Council on Disability
Endnotes
Executive Summary
Executive Summary
For the promise of
full integration into the community to become a reality, people
with disabilities need safe and affordable housing, access to
transportation, access to the political process, and the right
to enjoy whatever services, programs, and activities are offered
to all members of the community at both public and private facilities.1
Introduction
Communities in the United States are faced with
increasingly difficult decisions about how to plan for change,
and increase and improve the quality of life for adults with disabilities
as well as elders who may develop disabilities as they grow older.
People are living longer lives today than ever before and the
population of people aged 65 and older is growing rapidly. By
2030, one in five people in the United States will be over the
age of 65. Currently, more than 4.7 million Americans aged 65
years or older have a sensory disability involving sight or hearing,
and more than 6.7 million have difficulty going outside the home.
As the population of elders grows, it is likely that the number
of people aged 65 and older with disabilities also will grow,
particularly among those 75 years of age and older.
Adults with disabilities and elders want to live
in their own homes as independently as possible for as long as
possible. People want to live in supportive communities that encourage
independence and a high quality of life. To facilitate independence,
people often need the same kinds of services. In addition, people
want to remain contributing members of the community. It makes
sense, therefore, for the disability community and aging network--groups
that traditionally work separately--to collaborate, align goals,
and share resources to address the challenges and opportunities
ahead.
As the demographic profile of the United States
changes, there will be an increased need for livable communities
that support the needs and aspirations of people with disabilities
and older adults. To meet this demand, three factors must be considered:
(1) the elements of a livable community; (2) existing examples
of livable communities in the United States today that can serve
as models for others; and (3) how these communities develop and
sustain livability features.
Framework of a Livable Community for Adults
with Disabilities
"Livable community" is a fluid term whose definition
may change depending on the context and such considerations as
community capacity, organizational goals, and the needs and desires
of particular groups of citizens. For the purposes of this report,
a Framework of a Livable Community for Adults with Disabilities
was constructed to define the elements that need to be in place
for a community to be considered livable for people with disabilities.
It is clear, however, that the elements that make a community
livable for people with disabilities make it a livable place for
all members of the community. Thus, in improving its livability
for one particular group of constituents, the community actually
accomplishes considerably more.
The Framework of a Livable Community for Adults
with Disabilities is inspired, in part, by a similar framework
developed for the AdvantAge Initiative, a project that helps communities
measure and improve their "elder-friendliness."2 It was informed
further by research on the concept of livability, results of recent
surveys of people with disabilities, countless interviews with
key informants and people with disabilities, and a focus group
session involving people with disabilities aged 30 and older in
Washington, D.C. Similar themes emerged from each of these activities
and were synthesized into the framework. Thus, a Livable Community
for Adults with Disabilities is defined as one that achieves the
following:
- Provides affordable, appropriate, accessible
housing
- Ensures accessible, affordable, reliable, safe
transportation
- Adjusts the physical environment for inclusiveness
and accessibility
- Provides work, volunteer, and education opportunities
- Ensures access to key health and support services
- Encourages participation in civic, cultural,
social, and recreational activities
Within each of these six areas, a livable community
strives to maximize people's independence, assure safety and security,
promote inclusiveness, and provide choice.
While no one community in the United States has
addressed all six of these livability goals to equal degrees,
many states, counties, and local communities have made extraordinary
improvements in their livability for people with disabilities
in one or even several of these areas. Their experiences and achievements
can serve as inspiration and provide replicable "best practices,"
which other communities can emulate as they strive to become more
livable.
Strategies and Policy Levers
Community efforts profiled in this report have employed
a variety of strategies and policy levers to (1) expand access
to affordable housing, transportation, and employment opportunities;
(2) make the built environment more accessible; (3) reconfigure
health and support service delivery systems to be more in line
with the needs of people with disabilities; and (4) promote the
social and civic engagement of these communities.
Nearly every initiative included in the report has
depended, to one degree or another, on strategic partnerships
that have worked together to achieve the following goals: (1)
leverage resources, (2) reduce fragmentation in the service delivery
system, (3) address consumers' needs in a coordinated and comprehensive
manner, (4) provide choice, and (5) implement policies and programs
that help people remain independent and involved in community
life. To maximize the potential for success, communities should
use one or more of the following strategies and policy levers
as well as develop all-important partnerships. These strategies
and policy levers can and should be used at every level of government--including
federal, state, county, and local--to affect change in any of
the areas included in the Framework of a Livable Community for
Adults with Disabilities:
Consolidate administration and pool funds of multiple
programs to improve ease of access to, and information about,
benefits and programs for consumers. This strategy is used to
streamline operations, eliminate redundancies, and leverage resources.
Use tax credits and other incentives to stimulate
change in individual and corporate behavior and encourage investment
in livable community objectives. This strategy is often used to
stimulate affordable housing development, reduce tax burden on
individuals, urge employers to hire people with disabilities,
and encourage the private sector to make their businesses more
accessible to elders and people with disabilities.
Provide a waiver or other authority to help communities
blend resources from multiple public funding streams to provide
and coordinate different services. This is a common policy lever
in the provision of coordinated health care and support services,
allowing agencies to blend funding streams, increase the availability
of home- and community-based services as an alternative to institutional
care, and support comprehensive and consumer-directed care.
Require or encourage a private sector match to
leverage public funding and stimulate public-private sector partnerships.
Several of the community initiatives profiled in the report depend
on monetary or in-kind contributions from the private and nonprofit
sectors for their continued existence.
In addition to these strategies and policy levers,
successful community initiatives often depend on the ingenuity
and persistence of community members who are able to mobilize
resources, generate excitement, and stimulate action in their
communities on behalf of people with disabilities and the elderly.
Lessons Learned and Recommendations
A number of lessons can be gleaned from the community
initiatives described in this report, many of which can serve
as recommendations to other communities that are planning to make
greater livability a priority issue in their locales.
Provide affordable, appropriate, accessible housing
People with disabilities, including the focus group
participants, say that satisfaction with housing arrangements
is the determining factor for remaining in or moving from their
communities, and this satisfaction depends on two key factors:
housing affordability and accessibility. "With stable housing,
people with disabilities are able to achieve other important life
goals, including education, job training, and employment." 3 According
to the Public Policy Collaboration, however, people with disabilities
"face a crisis in the availability of decent, safe, affordable,
and accessible housing," 4 and those with low incomes are the most
likely to be affected by this shortage. One estimate says that
as many as 1.8 million people with disabilities who receive Supplemental
Security Income (SSI) benefits have severe housing problems.5
Model community efforts profiled in this report,
which have expanded homeownership and rental housing options for
people with disabilities, have developed strong partnerships and
collaborations between the affordable housing system and the disability
community. These relationships ensure that the housing created
will meet the needs and preferences of people with disabilities
and/or elders. Additional priority action steps in the area of
housing include the following: (1) providing incentives for developers
to maintain existing affordable housing units and/or increase
such stock; (2) providing tax credits to help individuals with
disabilities and seniors remain in the homes where they currently
live; and (3) expanding awareness and encouraging incorporation
of universal design and accessibility features into existing or
new housing stock.
Ensure accessible, affordable, reliable, safe transportation
According to the 2003 National Transportation Availability
and Use Survey, about one in four individuals with disabilities
needs help from another person and/or assistive equipment, such
as a cane, walker, or wheelchair, to travel outside the home.
Nearly 6 million people with disabilities have difficulty getting
the transportation they need, because public transportation in
the area is limited or nonexistent, they don't have a car, their
disability makes transportation difficult to use, or no one is
available to assist them. The survey also found that more than
3.5 million people in the United States never leave their homes,
and more than half of the homebound are people with disabilities.
Of these, more than half a million indicate that, because of transportation
difficulties, they never leave home.6
Providing accessible, affordable, reliable, and
safe transportation is an enormous challenge to communities. To
address this challenge, some states and counties have been thinking
systemically. Priority action steps in the area of transportation
include the following: (1) creating "coordinated transportation
systems" that combine all the disparate transportation services
and funding streams into one system that is more efficient, cost-effective,
and universally accessible; (2) computerizing and centralizing
dispatch systems to make on-demand transportation more efficient
and less frustrating for consumers; and (3) exploring the use
of new technology to help people with disabilities and the elderly
navigate their community's thoroughfares and transportation options.
Adjust the physical environment for inclusiveness
and accessibility
Since the passage of the Americans with Disabilities
Act (ADA), noticeable accommodations have been made in communities
large and small to improve access for people with disabilities.
In most communities, however, expanding access to the physical
environment is still a work in progress. One of the greatest obstacles
to improving access for people with disabilities is the expense
associated with altering the built environment and making other
needed accommodations. In addition to cost, in larger cities or
towns, the sheer volume of work to be done causes delays in making
necessary changes. In older communities where there are many historic
structures that need to be retrofitted for accessibility, conflict
sometimes arises between preservationists and disability advocates.
An equally significant obstacle is lack of awareness among the
public about the difficulties people with disabilities face as
they try to negotiate the physical environment.
Fortunately, there are many resources available
at all levels of government to help communities address these
and other obstacles to accessibility. Priority action steps in
this area include the following: (1) increasing awareness among
community members by providing them with sensitivity training
so that they can experience first-hand the access problems people
with disabilities face; (2) educating city planners and public
officials about how lack of access affects elders and people with
disabilities and what they can do as professionals to improve
the situation; (3) advocating for variances to zoning ordinances
to accelerate improved access to the built environment.
Provide work, volunteer, and education opportunities
A fundamental principle of Title I of ADA is that
people with disabilities who want to work and are qualified to
work must have an equal opportunity to work. However, unemployment
among people with disabilities remains unacceptably high. The
2004 National Organization on Disability (N.O.D.)/Harris Survey
of Americans with Disabilities7 shows that working-age adults
with disabilities are half as likely as working-age adults without
disabilities to be employed (35% versus 78%), and people with
severe disabilities are less likely to be employed than those
with slight disabilities (21% versus 54%).
Priority action steps to increase employment opportunities
for and encourage the hiring of people with disabilities include
the following: (1) using technology to facilitate education and
training programs, to provide telework opportunities, and to match
qualified job candidates with employers; (2) increasing awareness
among community members about the value of employing people with
disabilities; (3) setting an example by hiring people with disabilities
for positions within government agencies; (4) helping businesses
make reasonable accommodations for employees with disabilities
by providing them with needed funding and/or technical assistance;
and (5) removing any remaining disincentives to work, such as
the potential loss of health care, SSI, or other entitlements.
Ensure access to key health and support services
Results of a survey by the Henry J. Kaiser Family
Foundation reveal that, despite their well above average use of
health care services, individuals with disabilities face greater
barriers to health care access than does the rest of the population.8
People with disabilities have trouble finding doctors who understand
their disabilities and are less likely than the general population
to receive the range of recommended preventive health care services.
In sum, people with disabilities face a fragmented health care
delivery system that does not respond to their wishes or needs.
Priority action steps in the area of health care
include the following: (1) designing health care systems that
are consumer directed and provide care coordination to ensure
that the right kind of care is provided to beneficiaries; (2)
allowing "money to follow the person" to the most appropriate
and preferred care setting to create a more equitable balance
between institutional and community-based services, eliminate
barriers to care, and provide consumers with choice over the location
and type of services provided; (3) integrating the delivery of
acute and long-term care services to provide "seamless" high-quality,
consumer-centered, and continuous care across settings and providers,
and (4) providing support services that are linked to housing
to increase the availability and efficiency of service provision.
Encourage participation in civic, cultural, social,
and recreational activities
According to the 2000 N.O.D./Harris Survey of Community
Participation, overall, "people with disabilities feel more isolated
from their communities, participate in somewhat fewer community
activities, and are less satisfied with their community participation
than their counterparts without disabilities." 9 The survey attributes
the lower rates of participation among people with disabilities,
in part, to lack of encouragement from community organizations.
A community can hardly be called livable for people with disabilities
if the people are not involved in the community's civic, cultural,
or social activities.
The survey results suggest that it is not enough
for community organizations to simply offer activities and provide
information about them to people with disabilities. Thus the priority
steps in this area include the following: (1) encouraging community
organizations to actively reach out to people with disabilities
to include them in activities, and (2) ensuring that people with
disabilities have access to all of the opportunities that are
offered to other members of the community.
It is reasonable to assume that communities will
always face financial and structural obstacles to becoming more
livable for people with disabilities. Intangible obstacles, like
the public's lack of awareness and understanding of the difficulties
people with disabilities face in their communities on a daily
basis, are perhaps even more pervasive and difficult to overcome.
But, as the community examples in this report illustrate, where
there is political will, there are many possible, creative ways
to surmount obstacles that prevent communities from being more
livable for us all.
Chapter 1: Elements of Livable
Communities for Adults with Disabilities
An Introduction to Mr. Clyde
Boger
As public housing projects go, Amsterdam Houses
in New York City is better than many. The location--a busy neighborhood
close to one of the city's cultural hubs--couldn't be better.
The housing complex's 14 buildings are spaced widely apart, and
the grounds are park-like. But despite their proximity to elegant
theaters and concert halls, Amsterdam Houses can seem worlds away.
Most residents have little in common with the well-dressed patrons
who can afford to attend the cultural offerings and elaborate
opening parties at neighboring Lincoln Center.
We arrived at Mr. Clyde Boger's building at 2:00
p.m. on a cold weekday afternoon. The building's intercom wasn't
working and the front door of the building was unlocked, but we
could open it only after pressing against it with all our might.
The elevator--which was graffiti-free--took us to the 11th floor.
We knocked on the door of the apartment where Mr. Boger has lived
for 53 years. Such long-term tenancy is not unusual at Amsterdam
Houses: 92 percent of the 600 or so residents aged 65 and older
have lived there for 30 years or more, and more than half of these
for at least 50 years. Like Mr. Boger, the majority of older residents
of Amsterdam Houses are people of color (88%), live alone (56%),
and have incomes below 200 percent of poverty (63%).
Mr. Boger promptly opened the door and invited us
in. He looked younger than his 85 years, and his darkened glasses
and need to hold on to the wall and furniture to navigate through
the apartment were the only visible indicators of his many health
problems. Mr. Boger is legally blind and has glaucoma. He had
had successful cataract surgery in both eyes more than three decades
ago, but after having a stroke in 1983, he lost most of his vision.
He also has hypertension, high cholesterol, diabetes, and a heart
pacemaker. But he cheerfully led us into the cramped living room
of his tiny apartment, and as we sat on the small sofa, we observed
a cloud of dust rise in the streaks of sunlight streaming into
the overheated room.
As we waited for Mr. Boger to get comfortable, we
looked around and imagined that the room had changed little since
1951, when he and his wife moved in. Now Mr. Boger lives alone.
His wife, a teacher, died in 1985 of breast cancer, and Mr. Boger
retired early to care for her, forfeiting some retirement income
as a result. Then, their only son, who worked for the city's transit
department, died seven years later of colon cancer at the age
of 41. We wanted to know how he managed on his own, given his
multiple health problems. In response, Mr. Boger told us about
his routine:
I get up at about 9:30 and make myself breakfast--usually
cereal or toast. Then I sit in the living room and listen to
the news on the radio or television or to my jazz records--I
used to hang out at the Cotton Club and the Savoy when I was
young, you know. The Meals on Wheels people deliver lunch between
12:30 and 1:00--they were here just before you came. After lunch,
I take a nap, and in the afternoon I have to take my medication,
for my high blood pressure, cholesterol, diabetes, and bladder
problems. They also gave me three different eye drops. Then
I make dinner--last night I made chicken fricassee--and I listen
to the radio or TV, mostly news, until bedtime.
Noticing a crutch in the corner of the room, which
he did not use while we were in the apartment, we ask Mr. Boger
how often he goes out:
Oh, I go to the Veterans Administration Medical
Center four to five times a month. I usually go by taxi. Sometimes
a volunteer from the community center comes around and walks
me to the center for meals or activities, but sometimes I just
take a taxi over there-- it's just three dollars. A volunteer
from the democratic club comes by to take me to meetings and
brings me back. Did you know I was a coordinator for the Board
of Elections for 40 years, and I started the first tenant patrols
around here in the 1970s?
We ask Mr. Boger about food shopping and other household
chores:
I've got plenty of neighbors and friends who always
stop by and ask if I need something from the store. And when
my wife was alive she made friends with this family that had
a little daughter she loved like she was her own--you know,
the daughter we never had. Now that little girl is 43 and has
two sons of her own, 4 and 13. She lives down the block and
she calls me every day and comes in and does the cleaning and
shopping for me. Her mother, who's now in her 60s, does my laundry.
I sure enjoy it when those boys come over!
When we ask him whether he plans to get surgery
for the glaucoma, he shakes his head "no" and explains:
I'm 85 years old. I can see what I need to see.
I get along fine and I don't have any problems. I have food
to eat, clean clothes, a decent place to live, friends nearby,
and whenever I need something I know who to call.
Certainly, these are the basic ingredients of an
independent life. But then he tells us the harrowing story of
what happened to him just a few months ago when he passed out
at home because his blood sugar was so low. He couldn't see but
managed to crawl to the telephone and call his neighbor. Luckily
she was home and was able to call 911 and summon an ambulance
for him.
We chat a bit longer, mainly about Mr. Boger's favorite
topic--politics. He is well informed and freely voices his opinions
on the top issues of the day. Before we know it, it is 4:00 p.m.,
and we realize that we have made Mr. Boger miss his nap. We thank
him for his time and get up to leave. Although he has many friends
and claims not to be lonely, we can tell that he enjoyed having
visitors and the opportunity to talk. We stop at the door, shake
his hand good-bye, and on the way out wonder how long Mr. Boger's
proud independence will last.
A Population Growing Older
Mr. Boger began his long education in self-reliance
at an early age. He was orphaned as a child and his four sisters
abandoned him by the time he was 7 years old, leaving him to live
with neighbors and fend for himself. He worked his way through
school, including three years of college, and became economically
independent. Happy and productive in his youth and middle age,
Mr. Boger's life took a tragic turn when his wife was diagnosed
with breast cancer. During the years after she died, he faced
further losses--of his son, his robust health, and his sight and
mobility. Mr. Boger's story is not unusual. Like Mr. Boger, 42
percent, or more than 1.4 million Americans 65 years of age or
older, live alone; 14 percent, or more than 4.7 million, have
a sensory disability involving sight or hearing; and 20 percent,
or more than 6.7 million, have difficulty going outside the home.10
Several studies published in recent years11 show
that overall disability rates for people 65 and older are falling,
although some researchers believe that these falling rates mostly
apply to Instrumental Activities of Daily Living.12 In either
case, the fact remains that people are living longer lives today
than ever before and one in five people in the United States will
be over the age of 65 by 2030. This combination of trends raises
the prospect that the number of people 65 and over with disabilities
will grow along with the general population of elders, particularly
among those 75 years of age and older. Aside from genetic make-up,
several risk factors--all of them present in Mr. Boger--increase
the chances that a person will become disabled as he or she grows
older:
Age: While only 18.6
percent of people 16 to 64 years of age have a disability, 41.9
percent of those aged 65 and older have a disability. Among
those aged 75 and older, the percentage is even higher--54 percent.13
- Race: Among those
65 and older, Asians and non-Hispanic whites have the lowest
disability rates (40.8% and 40.6%, respectively), while blacks
and Native Americans have the highest (52.8% and 57.6%, respectively).14
- Income: Older people
with low incomes are at higher risk for disability. While 40
percent of those with incomes above the poverty level have a
disability, 56 percent of those with incomes below the poverty
level have a disability.15
To accommodate these demographic trends, changes
must be made that, according to the American Association of Retired
People (AARP) Report to the Nation on Independent Living and Disability,
cause a "major improvement in the quality of life" for people
with disabilities.16
Loss of Independence: A Common Concern
Mr. Boger worked hard all his life. He was a combat
medic in France during World War II and upon returning home worked
as a medical technician for the remainder of his career. He was
an exceptionally active member of his community and provided countless
volunteer hours to various causes. He was a full-time caregiver
to his wife and his son. And, until his stroke, which left him
virtually blind at age 64, he was not disabled in any other way.
To the casual observer, Mr. Boger, who lost his vision in his
seventh decade after a lifetime of sight, might seem to have little
in common with a younger person who has been living with blindness
since birth. People with disabilities are just as diverse as people
without disabilities, if not more so. According to Beyond 50 2003
A Report to the Nation on Independent Living and Disability,which
was based in part on the 2000 AARP/Harris Interactive Survey of
Persons 50 and Older with Disabilities17 survey of more than 1,100
people aged 50 and older with disabilities, people with disabilities
may be "an even more heterogeneous population because of wide
variations in the types of disabilities they experience, the age
of onset of these disabilities, and their life experiences." 18
But, as the report continues, when people with disabilities talk
about what they most value--and fear--in life, cross-cutting themes
become evident:
Loss of independence, their number one fear, and
issues of control over decision making emerge as major themes.
Another theme is the desire to engage in ordinary activities
that help connect us to others and to take care of ourselves
as we age, such as keeping in touch with family and friends,
doing household chores, and engaging in exercise and physical
activity.19
And, when it comes to rating their communities on
livability for people with disabilities, the following emerged:
Overall, respondents rate their communities as
meriting only a B/C+ as a place to live for people with disabilities
or health conditions such as theirs. Persons age 50 to 64 and
those with very severe disabilities are the groups most likely
to give their communities a "D" or "below average." 20…Lack
of dependable and accessible transportation is the biggest problem.
The next most important problem is the lack of community services
to "help you maintain your independence as you grow older."21
Making Lifelong Independence Possible
For the promise of full integration
into the community to become a reality, people with disabilities
need safe and affordable housing, access to transportation, access
to the political process, and the right to enjoy whatever services,
programs, and activities are offered to all members of the community
at both public and private facilities.22
According to the AdvantAge Initiative National Survey
of Adults Aged 65 and Older, 93 percent of older people say that
they would like to live in their own homes as independently as
possible for as long as possible.23 The same holds
true for adults with disabilities. According to the AARP/Harris
survey, "persons 50 and older with disabilities, particularly
those age 50 to 64, strongly prefer independent living in their
own homes to other alternatives."24 Even if they were
to move, 69 percent of people aged 50 and over say they would
prefer to move to another home or apartment.25 As the AARP/Harris
survey illustrates, people with disabilities want access to the
same places, things, and opportunities that people without disabilities
are able to access. They want to feel safe and to learn, work,
and contribute in significant ways. They want to participate in
social activities and have relationships with others. In short,
people with disabilities want to achieve their full potential
and live meaningful lives in communities that actively include,
rather than passively isolate, them. The extent to which people
with disabilities are able to achieve these goals depends on a
number of factors, some of which can be discerned in Mr. Boger's
own story.
The following factors allow Mr. Boger to continue
living as independently as possible in the community.
Affordable and accessible housing:
While most people might not choose to live in public housing if
they had other options, for Mr. Boger and other elders living
in the Amsterdam Houses complex, this is a blessing. Mr. Boger
spends $495 per month on rent for his apartment, a bargain by
New York City standards, but nonetheless one that takes a big
bite out of Mr. Boger's civil service annuity of $1,471 per month.
Still, this is acceptable to him, given his modest needs in other
areas of his life. As he comments on his income, "It's really
not enough, but I can survive on it." For the time being at least,
accessibility is not an issue for Mr. Boger: There are no stairs
leading into his building, and the elevator takes him within three
or four steps of his front door. If his disability status were
to change, however, access might well become a problem.
Comprehensive health care:
Perhaps the most important factor that makes Mr. Boger's income
sufficient is that he does not spend any of it on health care.
With his multiple health problems that must be monitored continually,
Mr. Boger is fortunate to be eligible for care at the Veterans
Administration Medical Center.26 The Medical Center has a Visual
Impairment Service Team Program (VIST) that helps legally blind
veterans adjust to severe vision problems and a Home-Based Primary
Care Program in which a team of health care professionals provide
at-home care to patients. Mr. Boger, however, prefers to get his
care on site. He goes to the Medical Center several times a month
to see the cardiologist for his pacemaker, the podiatrist for
diabetes-related foot care, the urologist for bladder problems,
and other doctors and counselors as needed, all at the same location.
Every three months he picks up his medications at the Medical
Center. All this care is provided to Mr. Boger without any out-of-pocket
expenses.
Accessible transportation: Trips
to the Medical Center are Mr. Boger's principal outings. He tried
Access-A-Ride (a paratransit service in the city) a couple of
times, but the driver was late, he says, and not very courteous,
so Mr. Boger prefers to take a taxi--truly an on-demand transportation
system. Other than his crutch, which he uses when he leaves the
apartment, he does not need assistance to take the elevator down
to the street. Usually he is able to hail a taxi right outside
his building. Sometimes, if a taxi doesn't come by when he needs
it, he walks a half-block down to the corner to find one. He complains
about this, but, in a pinch, the short walk is still manageable
for him. He returns home by taxi as well. Although a taxi ride
from West 65th Street, where Mr. Boger lives, to East 23rd Street,
where the Medical Center is located, is expensive for someone
of modest means like Mr. Boger, the fact that he takes a cab only
about once a week makes it affordable to him. A less-expensive
alternative would be the city bus system, which is heavily used
by older people. All of the vehicles in the fleet are "kneeling"
buses, which are also wheelchair accessible, and they run 24 hours
a day, seven days a week. Although it is often slow-going in traffic,
the bus is a safe, affordable, and pleasant method of transportation
for countless older people in the city. The fact that transportation
options exist in his community is a key factor in Mr. Boger's
ability to stay independent.
Community-based services:
Although Mr. Boger did not talk about it much during our interview,
we know that professionals in the community are looking out for
him and are available whenever he needs them. The Lincoln Square
Neighborhood Center (LSNC), a few short blocks from Mr. Boger's
front door, provides recreation, education, and health-related
services to residents of all ages living in the Amsterdam Houses
and surrounding community. LSNC has a Naturally Occurring Retirement
Community-Supportive Services Program (NORCSSP), financed through
public-private partnerships that combine revenues and in-kind
supports to organize and provide a range of coordinated health
care and social services and group activities on site. A social
worker at LSNC is very familiar with Mr. Boger's situation and
monitors it without being intrusive. She arranged for Mr. Boger
to receive Meals on Wheels lunches, and she sees to it that staff
members or volunteers pick up Mr. Boger at his apartment and walk
him to the center for meals and activities whenever he feels like
joining the many other seniors who congregate at the nicely appointed
center. The fact that it is located within the housing complex
makes it accessible to all residents of Amsterdam Houses, regardless
of age and ability.
A social network: Ironically,
it is Mr. Boger's reliance on others that enables him to continue
living independently in his own home. While still able to meet
his personal care needs, like dressing, bathing, and getting around
inside his home--and even outside occasionally for very short
distances--Mr. Boger is unable to perform some of the instrumental
activities of daily living,such as food shopping or doing housework,
without the help of others. On several occasions in the past,
Mr. Boger availed himself of home attendants from a local home
care agency, but he says he prefers to be assisted by people he
knows--his neighbors and friends. Fortunately for him, he has
a wide social network that he and his family cultivated over a
period of years, both casually in the housing development where
they lived and through Mr. Boger's extracurricular activities,
such as his involvement in union activities (he was president
of the union for eight years) and through his volunteerism with
political organizations in the community. The dense, mixed-age
urban neighborhood in which Mr. Boger has resided for more than
50 years, although a drawback in some other respects, has facilitated
his interaction with people of all ages and mitigated the isolation
that so many older people face. Thanks to this extensive support
network, Mr. Boger is managing remarkably well at home.
Contributions to the community:
Despite his health problems, Mr. Boger continues to contribute
to his community--a habit he got into a long time ago. Claiming
to be "the oldest person living here," Mr. Boger acts as the unofficial
grandfather to the children and teenagers in his building, as
well as the two sons of the woman who helps him so much at home.
He continues to attend meetings of the democratic club, voice
his views, and act as a mentor to the younger attendees, who he
thinks needs some lessons in principles and integrity. These activities
are certainly less extensive than what he was used to in the past,
but at this point in his life, they seem just about right.
As Mr. Boger's situation demonstrates, people who
become disabled in later life are able to continue living in and
contributing to the community when the environment, health and
social services systems, and so-called "informal care network"
support their independence.
Adults with Disabilities Speak Out
The elements that help keep Mr. Boger independent
and the community "livable" for him are not very different from
those that make communities livable for younger adults with disabilities.
The AARP/Harris survey, for example, demonstrates that many of
the factors that make life in the community possible for 85-year-old
Mr. Boger are applicable to younger adults with disabilities.
Keeping up social connections, living in affordable and accessible
homes, being able to travel outside the home at will, having access
to transportation when needed, participating in outside activities
are some of the key factors that AARP/Harris survey respondents
say help them maintain their quality of life in their communities.27
We met with a group of 12 racially diverse people
with disabilities, ranging in age from 30 to the late 50s (with
one individual in his 70s), in Silver Spring, Maryland, to solicit
opinions about the various aspects of communities that make them
good places for adults with disabilities to live, as well as those
that impede livability. In the course of the two-hour discussion,
these 12 focus group participants echoed the responses provided
by respondents to the AARP/Harris survey, and they made it clear
that aspects of communities that facilitate independent living
are those they cherish the most.
Affordable, accessible, and safe
housing: Throughout the focus group session, the theme
of accessible, affordable, and safe housing appeared and reappeared.
Participants repeatedly stressed the importance of living in a
place of their own, and those who lived alone emphasized how much
they "like it." Two of the participants felt they were "blessed"
to have moved into their current residences from nursing homes,
thus regaining the independence that had been lost when they lived
in an institution. One participant felt especially grateful to
have a place of her own after a six-month period of homelessness,
including one month she spent in a shelter. Focus group participants
said that satisfaction with housing arrangements is the primary
motivator to stay in or move from their communities. While most
of the participants were living in subsidized housing that was
affordable to them, some had to initiate modifications to make
their homes fully accessible. Participants identified neighborhood
crime and the ability to exit from one's home easily in case of
fire or other emergency as safety issues.
Ready access to transportation
and the physical environment: Dependable public and special
transportation was mentioned frequently by the focus group participants
as being essential for travel around the community--to work, to
the store, to the doctor, to church, and elsewhere. Proximity
of stores, libraries, laundry facilities, recreation, and other
necessities helps make life easier as well, the focus group participants
said. Some described special transportation as consistently unreliable,
with the burden frequently placed on the individual to make travel
accommodations because of the lack of a central information system.
Sidewalks and curb cuts and thorough snow and ice removal were
mentioned as mobility facilitators. Some participants expressed
frustration over the lack of planning and provisions for accessibility
during the ongoing process of redevelopment in a number of communities.
While some accommodations for pedestrians are made during construction,
they are usually unsuitable for people in wheelchairs.
Work, education, and volunteer
opportunities: Participants in the focus group described
their eagerness to learn new skills and work, the challenges and
rejections they faced when looking for work, and the fears that
prevent them from seeking work, including the fear of losing Medicaid,
Medicare, or Supplemental Security Income (SSI) benefits. Participants
were eager to embark on new careers and hoped to be provided with
learning opportunities appropriate for their needs. Several participants
expressed how important it was for them to contribute to the community
in whatever way they are able.
Social and civic engagement: A
"community" is frequently defined in terms of its physical location,
but as the focus group participants pointed out, the definition
should include the social "climate" as well. Several members of
the group stressed that having neighbors who are friendly, or
at least respectful, enhances the environment, making it a more
welcoming and pleasant place to live. For some, living in a racially
and ethnically diverse community is a strong preference, and others
voiced the importance of going out and actively socializing with
neighbors during block parties or other neighborhood events. Several
of the focus group participants pointed out that measures taken
to improve life for adults with disabilities confer benefits on
others in the community as well, and any advocacy on the part
of people with disabilities should be inclusive. As one participant
put it: "We have a voice in the community, and we need to use
it to help other people, not just ourselves."
The Livable Community for Adults with Disabilities
Framework
Community is a general term that people tend to
define for themselves, depending on circumstances. Speakers of
a particular foreign language in a U.S. city, for example, might
consider themselves and their linguistic compatriots a "community,"
regardless of where in the city they live. More frequently, however,
community is defined geographically and refers to the immediate
area in which people live, such as a neighborhood. The neighborhood
may refer to a larger part of the city or town, such as the "near
north side" of Chicago or Georgetown in Washington, D.C.; a smaller
section of the city, such as a series of contiguous blocks; or
even, as in Mr. Boger's situation, a set of buildings located
in a particular neighborhood.
Livable community also has multiple definitions
that change depending on the context and such considerations as
community capacity, organizational goals, and the needs and desires
of a particular group of citizens.. For example, the American
Institute of Architects' (AIA) definition of a livable community
is oriented toward urban planning and community development. According
to the AIA, for a community to be considered livable, it must
"create a neighborhood identity, provide choices, conserve the
open landscape, plan on a human scale, encourage mixed-use development,
vary transportation options, preserve urban centers, and protect
environmental resources."28 With a specific constituency in mind--older
people--the AdvantAge Initiative uses a framework with four "domains"
to define a livable, "elder-friendly" community. Thus, in this
context, a livable community for older people is one that (1)
addresses basic needs for such things as food, transportation,
and information; (2) optimizes physical and mental health and
well-being by reducing barriers to care and promoting wellness;
(3) maximizes independence by providing resources to help the
elderly live comfortably at home; and (4) promotes social and
civic engagement so that they remain connected to others and participate
in community life.29 In the AdvantAge Initiative, these four "domains"
refer to community capacity relating specifically to older community
residents. It is not difficult, however, to see that a community
that successfully addresses these four domains becomes a good
place for adults of all ages and abilities to live.
For purposes of this study, we have created a framework
that defines the elements of a "livable community" for another
specific constituency--adults with disabilities (see Figure 1).
This framework synthesizes the observations made about Mr. Boger's
situation, comments made by focus group participants, results
of the AARP/Harris survey, and the 2000 National Organization
on Disability (N.O.D.)/Harris Survey of Americans with Disabilities,
as well as additional background research conducted for this study.
In the next chapter, we will highlight examples of communities
that have been addressing one or more of the elements of this
framework and explore what these communities did to become more
livable for residents with disabilities.
Figure 1. Framework of
a livable community for adults with disabilities.
Chapter 2: Provide Affordable,
Appropriate, Accessible Housing
Nine years ago, when Dennis
Fitzgibbons, Director of Operations at Alpha One, a Center for
Independent Living with offices in Bangor and South Portland,
Maine,30 and his family moved from Massachusetts to
Yarmouth, Maine, they contacted a real estate agent to help them
find a ranch house with wide doorways and large bathrooms to accommodate
Dennis' wheelchair. Thus began an odyssey that eventually took
the family through half a dozen real estate agents, who just could
not understand the family's needs, and visits to countless houses
that did not come close to being accessible. "We would show up
to see a house that the agent said was perfect for us, only to
find that it was a two-story Cape," Dennis explains. "Oh, I thought
you would really like this house," the agent would say, by way
of explanation. After many such false leads, the Fitzgibbons family
met an agent "who really stuck with us," says Dennis. "She was
bound and determined to find us a house and really hung in there.
But I remember that at one point, totally frustrated, she threw
up her hands and said ‘Where on earth do people with disabilities
live anyway?'"
In time, the family did find a home that met most
of their requirements, but some exterior modifications needed
to be made, including installation of a ramp leading to an entrance
door at the back of the house and repaving the driveway area to
create a smooth surface for Dennis' wheelchair. An indoor ramp
had to be constructed in place of the original stairways that
connected two parts of the house, but luckily no other major interior
renovations, like widening doorways or renovating bathrooms, were
required. Still, the Fitzgibbons family spent about $20,000 to
make the necessary modifications. "Because we moved from Massachusetts,
where home costs are higher, we had the money for a down payment
on a new home and a little left for the renovations," Dennis explains.
"There are some home modification programs available for those
with lower incomes, but we were not eligible." If they had needed
to take out a loan to pay for the renovations, however, they would
have been eligible for the state's Kim Wallace Adaptive Equipment
Loan Program. This program is a $6.5 million revolving loan fund
in which eligible residents of Maine may borrow up to $100,000
to purchase assistive technology (AT) or adaptive equipment to
enhance their independence.31 Home renovations are an acceptable
adaptation.
The Fitzgibbons' home is now thoroughly livable,
although Dennis says that some day he would like to redo the kitchen.
But that project will have to wait. "With two children at home,"
says Dennis, "we have other priorities at the moment!"
A Home of One's Own
Independence and integration
are among the most important values and goals shared by people
with disabilities, their families, and advocates. A home of one's
own--either rented or owned--is the cornerstone of independence
for people with disabilities. When a person with a disability
has a decent, safe, and affordable home, then he or she has the
opportunity to become part of the community. With stable housing,
people with disabilities are able to achieve other important life
goals, including education, job training, and employment.32
This theme was clearly echoed by participants in
our focus group, who repeatedly stressed the importance of living
in a place of their own and described the physical environment
that allows them to do so, as well as the challenges they face.
Satisfaction with housing arrangements, focus group participants
said, was the determining factor for remaining in or moving from
communities, and this satisfaction depended on two key factors:
housing affordability and accessibility. Most of the focus group
participants live in subsidized housing, which some had to modify
themselves to be able to live there. Across the nation, however,
people with disabilities "face a crisis in the availability of
decent, safe, affordable, and accessible housing," 33 because there
simply aren't enough units to meet demand, particularly for people
with low incomes who require subsidies to help pay for housing.
Over the past seven years, the number of renter
households with severe housing problems34 declined for every group
eligible for federal housing assistance except for low-income
people with disabilities. The Consortium for Citizens with Disabilities
Housing Task Force and the Technical Assistance Collaborative
estimate that as many as 1.8 million people with disabilities
who receive SSI benefits may have severe housing problems.35 They
are not receiving federal housing assistance and cannot get on
subsidized housing waiting lists. "Instead they are living in
congregate settings or in seriously substandard housing; still
living at home with aging parents who do not know what will happen
to their adult child when they can not longer provide for them;
or are either homeless or at risk of becoming homeless." 36
Many low-income people with disabilities who have
unmet housing needs are aged 65 and older. According to a recent
report produced by the Commission on Affordable Housing and Health
Facility Needs for Seniors in the 21st Century, there are nearly
six times as many seniors with unmet housing needs as currently
are served by rent-assisted housing, and waiting lists for many
types of subsidized housing are long. Citing Housing Our Elders,a
report produced by the Department of Housing and Urban Development
(HUD) in 1999 based on the 1995 American Housing Survey, the Commission
reports that "approximately nine elderly applicants were on waiting
lists for each Section 202 unit that became vacant within a year."
In addition, they report that hundreds of thousands of Section
8 assisted units in senior housing are in danger of disappearing
because they are considering "opting out" of the HUD program.37
The vast majority of senior homeowners have paid
off their mortgages; however, because of rising property taxes
and maintenance costs, there are many who are at risk of losing
their homes. Other seniors are not able to continue living in
their homes without making significant structural changes to accommodate
one or more functional limitations, and some of these modifications
may be quite costly to make. According to Housing Our Elders,when
the American Housing Survey was conducted in 1995, "over 1 million
elderly households…reported needing home modifications."38
Even if disability rates continue to decline, the number of older
people with a disability will grow from 6.2 million in 2000 to
7.9 million in 2020,39 largely because the population of older
people will climb dramatically in the next decade. The need for
housing modifications undoubtedly will grow commensurately with
this population increase.
The lack of affordable, accessible housing is due
to a number of factors, including the following:
The high costs of land, materials, labor, and "retrofitting"
existing housing with accessibility features
Land use and building regulations in local communities
that discourage multi-unit housing development
Public resistance and sometimes outright opposition
to building new housing or converting older buildings into housing
suitable for a range of incomes and abilities
Few incentives for private developers to build
affordable and accessible housing
Lack of demand from the general public for accessibility
features such as wider doorways because they do not see the value
of such features or assume they would raise the price of already
expensive housing
There are a range
of federal regulations that protect people with disabilities in
the following ways:
Prohibit housing discrimination on the basis of
disability
Set accessibility standards for new or rehabilitated
multifamily housing
Ensure that programs are accessible to people with disabilities
Provide incentives to developers for the inclusion of accessibility
features in the federally subsidized single-family homes they
build
Some new pilot federal programs, such as Project
Access,40 are trying out other mechanisms to expand access to
housing for people with disabilities.
Critics say, however, that inadequate funds and
lack of a coherent and comprehensive federal housing policy are
major obstacles to increasing the stock of affordable and accessible
housing in the United States.41
To make matters worse, the nation's existing "affordable
housing programs are not organized or delivered systematically,
but rather through myriad complicated programs and housing agencies
that have no relationship to one another. Navigating through this
maze has proved very difficult for the disability community."
While there are some provisions in federal law
and regulation designed to foster collaboration between government
housing officials and the disability community-- including the
Consolidated Plan--housing advocates for people with disabilities
have not learned how to capitalize on them.42
Given the magnitude of the affordable/accessible
housing "crisis," effective solutions are going to require creative,
out-of-the-box thinking and the involvement of multiple stakeholders,
including state and local governments, private developers, consumer
advocates, and consumers. A number of states, counties, and cities
are making headway in expanding affordable and accessible housing
for people with disabilities. While approaches for addressing
these housing issues vary depending on local contexts, two common
elements exist in most successful efforts:43
The creative use of all available affordable housing
programs to expand homeownership and rental housing options; and
Strong partnerships and collaborations between
the affordable housing system and the disability community to
ensure that the housing created will meet the housing needs and
preferences of people with disabilities.
Efforts to increase the availability of affordable
and accessible housing generally fall into three categories:
Programs that provide incentives to maintain existing
affordable housing units and/or increase affordable housing stock
in the community
Programs that help people with disabilities and
seniors remain in the homes where they currently live or rent
or buy affordable and accessible housing
Programs that provide incentives to incorporate
accessibility features into existing or new housing stock
Following are several examples of states, counties,
and cities that have implemented significant, replicable strategies
to expand affordable and accessible housing for residents with
disabilities. Partnerships figure prominently in some of them,
including partnerships between the disability and aging communities.
These two groups often find that they are, in fact, on the same
side, representing the same constituency--people with disabilities
that have housing needs.
Programs that provide incentives to maintain existing
affordable and accessible housing units and/or increase affordable/accessible
housing stock in the community.
Austin, Texas. Austin's S.M.A.R.T.
TM Housing Initiative provides financial incentives for private
construction of affordable, accessible housing located close
to public transportation.44 The City Council adopted
the S.M.A.R.T. Housing Initiative in April 2000, with the goal
of motivating production of S.M.A.R.T. Housing.45 S.M.A.R.T.
refers to Safe, Mixed-Income, Accessible, Reasonably Priced,
and Transit-Oriented Housing. The initiative was an immediate
success. In the first year, the City Council expected to have
600 new single-family or multifamily housing units under development
review. By September 2001, more than 6,000 single-family or
multifamily units were under the review or inspection process.
By September 2004, 4,000 new single-family or multifamily units
had been completed. In 2004 alone, approximately 1,600 to 1,700
units were completed, with 78 percent of them reasonably priced,
nearly doubling the 40 percent target.46
- Safe: The development
complies with the land development code and the adopted building
codes.
- Mixed-Income: The
development includes at least 10 percent reasonably priced housing
units. All of the units meet S.M.A.R.T. Housing standards.
- Accessible: Developments
meet federal, state, and Austin's visitability standards for
accessibility.47
- Reasonably Priced: A
percentage of the units must be rented or sold to families whose
incomes do not exceed 80 percent of Austin's median family income,
and who do not spend more than 30 percent of the family's income
on housing. Reasonably priced rental units must be affordable
for at least five years; homeownership units must be affordable
for at least one year.
- Transit-Oriented: Requirements
are set for proximity and frequency of public transportation;
porch size and location; street orientation of the house; design
of parking areas, driveways, and walkways; and pedestrian and
vehicular connections.
Further recommendations are provided for transit
amenities (e.g., bus shelters), sidewalks, landscaping, lighting,
fencing, common spaces, parking, building facades, and mixed-use
spaces (e.g., commercial uses).
The goals of S.M.A.R.T. Housing are to stimulate
the development of affordable housing by providing incentives
to private developers and encourage collaboration between the
public and private sectors. To achieve these objectives, the S.M.A.R.T.
Housing Policy Initiative accomplished the following:
For more information, see the S.M.A.R.T. HousingTM
Policy Resource Guide, prepared by the Neighborhood Housing and
Community Development, at http://www.ci.austin.tx.us/ahfc/downloads/smartguide.pdf.
Little Rock, Arkansas. The Arc
of Arkansas provides affordable, accessible housing to people
with and without disabilities in renovated historic buildings.
The Arc of Arkansas is "a statewide organization providing support,
housing, advocacy, education and leadership to people with developmental
disabilities and their families." 48 Their goal is to integrate
people with disabilities into the community. The Arc used Historic
Preservation Tax Credits together with federal, state, and local
funds49 to finance the renovation of abandoned buildings on the
National Register of Historic Places. To date, The Arc has renovated
three properties in Little Rock with a total of 106 rental units
in proximity to public transportation. Trinity Court Place serves
low-income renters while Eastside Lofts and Westside Lofts serve
renters with mixed-income levels. All of the apartments contain
universal design features and are marketed to the general population.
Overall, about 40 percent of renters are people with disabilities.
A brief description of the properties follows.
-
Trinity Court Place Apartments50--The
building was built in 1911 and first housed a health maintenance
organization (HMO), then a nursing home. Trinity Court Hospital
donated the building to The Arc, which in turn partnered with
First Security Vanadis Capital, LLC to conduct the $2.1 million
renovation. Renovation of the building, which would become
Trinity Court Place Apartments, began in November 1998. In
September 1999, the first tenants moved into the 22-unit independent
living facility for low- to moderate-income people with developmental
disabilities and their families. The complex includes accessible
one- and two-bedroom apartments and includes unique features
such as "lower peepholes, lower wall cabinets, wider hallways
and walkways, detachable undersink cabinets, toilet seat and
bathtub grab bars, and a high-tech, keyless entry system." 51
The complex also includes common spaces, such as a community
room with full kitchen amenities, art gallery area, classroom,
veranda, and courtyard.
- Eastside Lofts52--Little
Rock High School (known as East Side High School) was built
in 1904. The Arc of Arkansas partnered with Bell/Corley Investments
to purchase the school, and contracted with First Security Vanadis
Capital, LLC to conduct the $3.6 million renovation of the school
into 41 affordable loft apartments for people with and without
disabilities. The apartments, which are fully compliant with
Americans with Disabilities Act (ADA) requirements, opened in
January 2002. In January 2004, rents for the one-, two-, and
three-bedroom units were listed at $220–$925 for people
who met the income requirements.53 After Bell/Corley recouped
on their investment, the ownership of the property went to The
Arc.
- Westside Lofts54--Westside
Junior High School, built in 1917, was renovated in 2003 and
transformed into 43 apartments with universal design features.
The development team of Dover Dixon Horne, Fennel Purifoy Hammock,
and Champion Builders and Herron Horton Architects put together
this $5 million project, with consulting services provided by
the First Security Vanadis Capital, LLC.
A fourth project is under way.55 The Arc purchased
St. Anthony's Hospital in Morrilton from the Historic Register.
The building is at the base of the Ouachita mountains and overlooks
the river valley. Renovation is planned for May 2004 for 30 mixed-income,
accessible apartments for a community of people age 55 and older.
The purchase price was built into the project cost, and The Arc
will get the money for acquisition back when construction begins.
After 15 years, when the requirements of the Low-Income Housing
Tax Credits end, The Arc will refinance the remaining bank debt
and become the sole owner. Income received from the properties
will be used to manage the properties and to help The Arc maintain
financial stability.
Additional efforts are under way to promote universal
design in Arkansas. With $100,000 in seed money from the legislature,
The Arc has an agreement with the University of Arkansas School
of Architecture to create a universal design center that will
train architects, engineers, developers, and investors. The Arkansas
Development Finance Authority provides incentives to developers
and contractors to use universal design, and First Security Vanadis
Capital, LLC continues to encourage clients to use universal design.
For more information, see The Arc of Arkansas Web
site at http://www.arcark.org.
Programs that help people with disabilities and seniors
remain in the homes where they currently live or rent or buy affordable
and accessible housing.
Alexandria, Virginia. Alexandria
and other Virginia communities use the Virginia Real Estate
Tax Relief Program for Elderly and Disabled Persons to help
reduce housing costs for thousands of Virginia residents.56
The Virginia Real Estate Tax Relief Program for Elderly and
Disabled Persons has been in effect since the early 1990s.57
It is a state law that is administered by local jurisdictions.
The real estate tax relief program was implemented to prevent
people living on fixed incomes from moving out of their homes
because of rising property taxes.
To qualify for real estate tax relief or deferral,
residents must meet certain eligibility requirements. Applicants
must be 65 years or older, or permanently and totally disabled.
They must fully or partially own the property and occupy it
as their sole residence. Applicants in a hospital, nursing facility,
or other institution still qualify as long as they don't rent
out their property. Residents also must meet specific income
requirements. In 2004, the state income limit was $62,000 and
the state asset limit was $240,000.
In Alexandria, residents qualified for a full
or partial tax exemption in 2004, depending on their combined
gross household incomes58 in 2003. People qualified for a full
tax exemption if their income did not exceed $40,000, a partial
tax exemption of 50 percent of taxes owed if their incomes did
not exceed $50,000, or a partial tax exemption of 25 percent
if their incomes did not exceed $62,000. Applicants approved
for a partial exemption may defer the remaining balance of taxes
owed. Interest accrues on the unpaid taxes at 5 percent per
year from the date of the deferral until the taxes are fully
paid, usually when the property is sold or when the owner is
deceased.
Applicants must reapply every three years by completing
a multipage application with detailed income information. During
the intervening two years, applicants complete a simpler form
that asks about any changes since the previous application.
Full data is not yet available for 2004. In Alexandria,
as of May 2004, 850 people applied for tax exemptions. Table
1 shows that, with each passing year, more people are taking
advantage of the program. In each year, more than 90 percent
of applicants received either a full or partial tax exemption,
or a tax deferral. In 2003, exemptions totaling $1,658,836 were
granted to 709 applicants, resulting in an average exemption
of approximately $2,340; total taxes deferred were $7,080 and
the average amount was about $1,770.59
Source: Personal correspondence,
Gary Rossi, Revenue Collections Specialist, Revenue Division,
Department of Finance, City of Alexandria, May 11, 2004.
In each year, 80 to 90 percent of applicants were
elderly people. The percentage of younger people with disabilities
was slightly higher than the percentage of elderly people with
disabilities (See Table 2).
Source: Personal correspondence,
Gary Rossi, Revenue Collections Specialist, Revenue Division,
Department of Finance, City of Alexandria, May 11, 2004.
For more information about Alexandria's program,
see City of Alexandria, Virginia, at http://ci.alexandria.va.us/finance/rea_tax_relief.html.
For more information about the statewide Virginia
program, see Knapp, J.L., & Kulp, S.C. (2002). 2002 Tax
Rates: Virginia's Cities, Counties, and Selected Towns(Section
3). 21st Annual Edition. Weldon Cooper Center for Public Service,
University of Virginia, at http://www.virginia.edu/coopercenter/vastat/taxrates2002/02section03.pdf.
Austin, Houston, El Paso, Tarrant
County, and Dallas, Texas. The Texas Home of Your Own Coalition
(Texas HOYO) was established to help people with disabilities
become homeowners and maintain their housing. Recently
recognized by Fannie Mae, Texas HOYO is an excellent example
of a successful home ownership coalition. The coalition unites
multiple partners to help people with disabilities through every
step of the home-ownership process, from counseling people with
disabilities as they prepare for homeownership to helping people
during the post-purchase period as they adjust to homeownership
and the responsibilities that accompany it.
Texas was one of the 23 states taking part in
the National HOYO Alliance.60 In 1995, under the leadership
of United Cerebral Palsy of Texas (UCP), a number of stakeholders
united their vast knowledge of the housing industry, experience,
and resources to "make the system work" for people with disabilities.
The partners are committed to the program's success and support
participants in several ways:
- Housing counseling organizations
provide prepurchase homebuyer counseling
and education, budget preparation, early delinquency intervention,
credit repair counseling, and post-purchase follow-up and support.
- Realtors help
locate homes and property inspectors.
- Lenders61 play
a key role with mortgage products, down payment and closing
cost assistance, and financial assistance for property rehabilitation
and maintenance.
- Disability organizations62 are
involved in home assessments for accessibility, grant writing,
and marketing services.
The coalition engaged state and local housing organizations
to become active members and created a partnership between the
coalition and the Texas Department of Housing and Community Affairs
(DHCA). To date, Texas HOYO has helped more than 200 people with
disabilities purchase their own homes in the urban and rural sections
of Austin, Houston, El Paso, Tarrant County, and Dallas.63 The
majority of participants have mobility impairments (58%) and incomes
at or below 50 percent of the area median income (69%).
To promote the program, HOYO uses a variety of marketing
tools such as newsletters, news media, and presentations. To apply
for assistance, potential participants call HOYO at an 800 number
for an initial screening, attend an orientation program to learn
about the homebuying process, and complete an application to determine
program eligibility.
Once participants are accepted into the program,
they attend a required first-time homebuyer training session and,
with assistance from HOYO partners, learn how to locate a home
and apply for a mortgage. Because many prospective homeowners
with disabilities do not have enough money for a down payment,
HOYO can cover the shortfall with a five-year forgivable loan
using HOME, Community Development Block Grant funds, and affordable
housing grants awarded by the Federal Home Loan Bank.
After the closing, new homeowners may receive financial
assistance to make accessibility related changes. HOYO provides
financial counseling, information about other programs that provide
housing assistance, and a limited amount of financial assistance.
Homeowners can contact Texas HOYO with questions about their home
or requests for assistance at any time.
Texas HOYO has succeeded in leveraging more than
$9 million in resources from the Texas Council for Developmental
Disabilities, the Texas Department of Housing and Community Affairs,
private foundations, Fannie Mae, and other lending partners. By
considering itself a "homeownership program" rather than a "disability
program," HOYO has been able to extend its services beyond people
with disabilities to other low-income populations in the area.
In an example provided by UCP, a couple, both in
wheelchairs, bought a home in 1997 with the help of Texas HOYO.
Both had personal experience living in institutions--one had been
a resident of a state school for 30 years, the other had lived
in a nursing home for a dozen years--so the thought that they
could live independently, let alone be homeowners, never seemed
within their realm of possibility.
But with $44,000 in down payment assistance from
Texas HOYO, a mortgage from HomeChoice, funds for barrier removal
from the HOME program, and a Medicaid Home- and Community-Based
Services (HCBS) Waiver, they were able to purchase a brand new,
single-family home for $76,000, on the $1,120 monthly disability
benefits they receive.
While the HOYO program is a labor-, time-, and resource-intensive
process that requires a great deal of commitment by the coalition
members, it has proved worthwhile: To date, none of the homeowners
has defaulted on a mortgage.
For more information about the Texas HOYO, see Langendorf,
J., Hubert, N., Eiken, S., & Schaefer, M. (2003). Texas Home
of Your Own Coalition. Prepared for U.S. Department of Health
and Human Services, Centers for Medicare and Medicaid Services
(CMS), Disabled and Elderly Health Programs Division, available
at http://www.cms.hhs.gov/promisingpractices/txhoya.pdf.
Programs that provide incentives to incorporate accessibility
features into existing or new housing stock.
Georgia's EasyLiving HomeCM
Program is a certification program that encourages builders
to construct and market accessible single-family homes and townhouses.
The EasyLiving HomeCM program is administered by a coalition
that includes the building industry, state and local government,
and accessibility advocates. Certification by EasyLiving HomeCM
enables builders to advertise their homes as being easy to live
in and visit for people of all ages, sizes, and physical abilities.65
Homes constructed with accessibility features enable residents
to remain in their own homes as they age and/or develop mobility
limitations.
The first home was certified in April 2002, and
50 homes have been certified since that date.66 Approximately
600 homes are now in various stages of development and construction.
Certified homes range in size from 1,200 square feet to 4,500
square feet, and average 3,000 square feet. Prices range from
$90,000 to $600,000. Twenty-five registered builders are located
in Valdosta (South Georgia), Savannah, Athens, Big Canoe (North
Georgia Mountains), and throughout metropolitan Atlanta. Plans
are under way to expand the program to other states, with a
Replication Summit planned for September 2004.
Builders qualify for EasyLiving HomeCM certification
by including accessibility features in the homes they build
to benefit homebuyers in various ways.67 For example, accessible
homes have step-free entrances, wide doorways, and a bedroom,
kitchen, living room, and wheelchair-friendly bathroom on the
main floor, enabling social visits by friends and family with
mobility limitations. Easy access for all people is stressed.
For example, step-free entrances ease entry not only for people
with mobility impairments but also mothers with baby strollers.
Wide doorways provide access for family members with disabilities
and also facilitate movement for anyone carrying bulky items
or moving furniture.
The EasyLiving HomeCM certification procedure includes
the following steps:
- The program director and coalition partners give
formal presentations to builder organizations and one-on-one
presentations to builders.
- Builders who decide to register with the program
pay a fee ranging from $100 to $1,000, depending on the number
of homes they plan to certify.
- The program director offers to review the plans
and suggests modifications before construction begins.
- After construction is under way, the program
director conducts a home visit to check that required features
are in place (e.g., measures doorways and hallways).
- Homes that meet the program's requirements are
awarded a certificate and a seal that can be posted on the home.
For more information, see the EasyLiving HomeCM
Web site at http://www.easylivinghome.organd
the Web site at http://www.concretechange.org/ga_easy_living.htm.
"Universal Design: Homes for the
Future Today," in Irvine, California, is a consumer education
program designed to expand accessibility in single-family homes.68
Irvine's Universal Design Program stemmed from concerns among
Irvine residents that, while some apartment buildings in Irvine
had features designed to improve access for people with disabilities,
new single-family homes being built in the city did not. The Irvine
City Council appointed members to an Accessible Housing Task Force
with representation from the Irvine Residents with Disabilities
Advisory Board, the Irvine Senior Council, the Orange County Association
of Realtors, the City of Irvine Planning Commission, the Building
Industry Association, and The Irvine Company.69
The task force reviewed building requirements and
cost concerns and developed a voluntary program for homebuilders
to offer buyers a list of 33 accessibility features. Each participating
homebuilder maintains a list containing all 33 features and indicates
which of the features are available at the company's project and
whether they are "standard," "limited," or "optional." The list
identifies the cost, if any, to the homebuyer and at what point
in the course of construction the feature must be installed. Features
range from major external modifications (e.g., level entryways
leading to homes) to minor changes (e.g., lever-style door handles
and handheld showerheads). Sellers and buyers alike must sign
an acknowledgment that the list of features was provided to the
buyer.70
Plans are under way to construct at least one home
with universal design features in each model home project to promote
better awareness among homebuyers and encourage them to ask for
these features in their new homes. A beautifully designed brochure
illustrates the point that people of all ages and abilities can
benefit from universal design.
The Universal Design Program is a collaborative
effort71 among the City of Irvine, The Irvine Company72, and the
Orange County Chapter of the Building Industry Association of
Southern California and was adopted by the City Council on January
25, 2000.73 By 2002, 14 participating builders74 had 23 new developments
with homes with accessibility features ranging in size from 1,100
to 4,000 square feet and ranging in price from $200,000 to $900,000.75
By 2004, virtually all of Irvine's new homebuilders were participating
in the voluntary program.76
Eric Tolles, Chief Building Official in Irvine's
Building and Safety Division, attributes the program's success
to Irvine's status as a "planned urban community" and the fact
that the Irvine Company owns most of the undeveloped land in Irvine
and sells it to residential builders. These two factors help make
it easier to obtain builder cooperation and coordinate marketing
efforts.77
For more information, see the City of Irvine Web
site at http://www.cityofirvine.org/depts/cd/buildingsafety/accessibility_universal_design.asp.
Chapter
3: Ensure Accessible, Affordable, Reliable, Safe Transportation
Terry Szold, a land use planning
consultant and adjunct associate professor in the Department of
Urban Studies and Planning at the Massachusetts Institute of Technology,
lives in Andover, Massachusetts, and needs to travel out of town
occasionally for work and professional meetings. Szold has relied
on a scooter to get around for the past eight years and owns a
van with a lift that accommodates the scooter. She generally is
able to get where she needs to go. But when she travels outside
the immediate surroundings of her home and work, she often encounters
barriers. A recent business trip to Washington, D.C., was a case
in point.
Professor Szold took Amtrak's Acela Express train
from Boston to Washington, D.C., and gave it high marks for accessibility.
She also praised Washington's subway system. As long as she traveled
the main subway route, access was good. But during her stay, Szold
also had to travel to meetings located beyond the immediate downtown
area, and the only way to get where she needed to go was by taxi.
She was shocked and dismayed to find that there is not a single
wheelchair-accessible taxi in the nation's capital. Luckily her
husband, who accompanied her on this trip, was available to help
her get into a regular taxi. He then dismantled her scooter to
fit inside the car. If she had traveled alone, Professor Szold
could not have managed these tasks on her own.
When relating this story, Szold reveals her anger
about the challenges she faced on this business trip. She makes
the point that unavailable or inaccessible transportation is not
simply an annoyance and inconvenience for people with disabilities;
"it is something that can impede people's career advancement,"
she says. Whether it's a train, a subway, a taxi, or any other
vehicle, accessible transportation is not just a means of getting
from Point A to Point B, it is a means of accessing work opportunities,
medical care, goods and services, and civic and social activities.
For people with disabilities, the availability of transportation
that accommodates their mobility needs takes on even greater significance
because it promotes their independence, self-sufficiency, and
full participation in community life.
According to the 2003 National Transportation Availability
and Use Survey,78 about one in four individuals with disabilities
needs help from another person and/or some sort of assistive equipment,
such as a cane, walker, or wheelchair, to travel outside the home.79
Nearly one in eight people with disabilities, or about 6 million,
have difficulty getting the transportation they need because public
transportation in their area is limited or nonexistent, they don't
have a car, their disability makes transportation difficult to
use, or no one is available to assist them, among other reasons.80
The survey also found that more than 3.5 million
people in the United States never leave their homes. More than
half of the homebound--1.9 million--are people with disabilities.
Of these nearly 2 million people, 560,000 indicated that they
never leave home because of transportation difficulties.81 Access
to transportation also was identified as a major issue by participants
in the focus group. Participants who use wheelchairs and paratransit82
services recalled times when at the end of a work day they were
left downtown on their own with no way of getting home. Sometimes
the wait was five hours or longer, with no central phone number
to call for information or assistance. Focus group participants
who used public transportation for their day-to-day travel talked
about the barriers they sometimes face, such as bus stops where
the space is so narrow they cannot maneuver their wheelchairs,
obstructions from nearby construction sites and, in the winter
months, piled up snow and ice.
As a result of ADA of 1990, state and local governments
must give people with disabilities an equal opportunity to benefit
from all government programs, services, and activities, including
transportation. The transportation provisions of ADA's Title II
cover public transportation services, such as city buses, public
rail transit, subways, commuter rails, and Amtrak.83 Public transportation
authorities may not discriminate against people with disabilities
and must comply with accessibility standards in newly purchased
or leased vehicles and in vehicles that have been remanufactured.84
Under ADA, transit operators also must provide paratransit services
along existing fixed-route bus or rail systems, unless it would
result in an "undue burden." ADA does not require that all taxis
be wheelchair accessible if a city provides alternative transportation
opportunities for people with disabilities. But in big cities
like Washington, D.C., or New York, where, as Terence Moakley,
associate executive director of the United Spinal Association
says, people "think of taxis as part of [the] basic transportation
system," one would expect to see more accessible cabs than there
actually are. In New York City, for example, only 5 out of 12,187
yellow cabs on the street today are wheelchair accessible. Some
U.S. cities, such as those profiled later in the chapter, are
working on expanding fleets of accessible taxis, but these efforts
pale in comparison with those of London, England, where 100 percent
of taxis are wheelchair accessible.85
Nationally, compliance with ADA transportation provisions
is still a work in progress. Since these provisions went into
effect, for example, the Federal Transit Administration (FTA)
and the nation's transit operators have been working to ensure
that buses used in every community's fixed-route bus system are
100 percent lift or ramp equipped by the year 2007. By the end
of 2001, 83 percent of transit buses were ADA compliant, compared
with 35 percent in 1990.86 In many communities, bus fleets are
already 100 percent ADA compliant for people with mobility impairments,
and, in some of these communities, transit authorities have gone
the extra mile to make the transit system disability friendly.
In Austin, Texas, for example, buses have automated audible systems
that announce upcoming bus stops, and bus stop signs are in Braille.
Providing accessible, affordable, reliable, and
safe transportation is such an enormous challenge that some states
and counties have been thinking "systemically," trying to coordinate
all the disparate transportation services and funding streams
to create more efficient, cost-effective, and universally accessible
transit systems. Realizing that lack of coordination is largely
due to the fact that 62 different federal programs fund transportation,
not to mention the proportion of state and local taxes earmarked
for transportation, several federal agencies, including the FTA
and the Departments of Health and Human Services, Labor, and Education,
have launched "United We Ride," a national five-year initiative
to break down the barriers within human service transportation
programs and encourage local partnerships to improve transportation
services.87 One of the components of this initiative is the Framework
for Action: Building a Fully Coordinated Transportation System,
a comprehensive evaluation and planning tool to help state and
community leaders, and agencies involved in human service transportation
and transit service, along with their stakeholders, improve or
start coordinated transportation systems.88,89 A number of states
and counties profiled later in this chapter--including the State
of Florida; Broward County, Florida; counties in Central Virginia;
and Sweetwater County, Wyoming-- have been working for some time
to increase the options and availability of accessible transportation
for people with disabilities through coordinated transportation
services.
In his New Freedom Initiative (NFI), President Bush
called for expanded opportunities for people with disabilities,
stating that "every American should have the opportunity to participate
fully in society and engage in productive work. Unfortunately,
millions of Americans with disabilities are locked out of the
workplace because they are denied the tools and access necessary
for success." 90 Echoing Terry Szold's story, the NFI 2002 progress
report states that "inadequate transportation inhibits employment
for all people, but is an even greater barrier to people with
disabilities." 91 The Job Access and Reverse Commute (JARC) Program
addresses this issue through grants to state and local agencies
to provide new employment-related transportation services for
low-income persons, including people with disabilities. Since
the inception of the program, the Federal Government has funded
more than 200 such programs in 44 states.
Several examples of state- and county-coordinated
transportation efforts, JARC Program grantees, and cities that
are enhancing their on-demand transportation options by expanding
their accessible taxi fleets are profiled below. These programs
are followed by examples of dedicated community-based organizations
(CBOs) and individuals who initiated bottom-up approaches to addressing
transportation issues and are influencing community decisionmakers
to improve transportation options for people with disabilities.
Coordinated Transportation Systems
- The State of Florida has been working since
1979 to expand transportation services through the Florida Coordinated
Community Transportation Program.92
In 1979, the Florida Legislature enacted a law that
requires coordination among programs that receive local, state,
and federal funds to provide or purchase transportation for persons
who were collectively termed "transportation disadvantaged (TD)." 93
The program was reenacted in 1989. The 1989 act created the Florida
Commission for the Transportation Disadvantaged (CTD), an independent
commission housed administratively within the Florida Department
of Transportation (DOT). The CTD enhanced local participation
in the planning and delivery of coordinated transportation services
by creating local coordinating boards (LCBs) and community transportation
coordinators (CTCs).
In accordance with the statute, the CTD contracts
with CTCs that serve each of Florida's 67 counties. These coordinators
assist in planning and coordinating transportation services for
the TD.
Funding: Florida has created
a Transportation Disadvantaged Trust Fund (the TD Fund) to maintain
a steady state funding source that can be used to match various
federal grants and to purchase transportation for nonsponsored
TD persons. The TD Fund revenues of approximately $20 million
annually are generated from a $1.50 additional charge on each
vehicle registration renewal. In addition, the state has a voluntary
contribution program called "Put Your Dollar to Work." A check
box on the vehicle registration form permits people to submit
an additional, voluntary contribution of $1.00 to the Fund. The
TD Fund pays for transportation for persons whose trips are not
sponsored by other programs. Other major funding sources include
the Agency for Health Care Administration, DOT, Department of
Children and Families, and other local funds.
Service: Service patterns
are determined on a county-by-county basis by LCBs, who provide
oversight for the CTCs. Transportation is provided by more than
460 qualified providers statewide, including public transit operators,
taxi companies, human service agencies, and volunteers. Florida's
coordinated transportation services are primarily intended for
people who not able to transport themselves, including clients
of human service agencies and people who qualify as TD. Clients
call their service agency, which then arranges the necessary trips.
Individuals who are not agency clients but who are TD schedule
trips through the CTC or a service provider designated by the
CTC. In fiscal year (FY) 2003, more than 53 million trips were
provided through the coordinated transportation network, with
approximately 60 percent of those trips provided to people with
disabilities.
Benefits: The state-directed
coordination of transportation services has many advantages:
- The number of trips taken though the system grew
from 1.5 million in 1985 to 36 million in 1998 to more than
53 million in 2003.
- A recent independent assessment conducted by
the University of Florida Bureau of Economic and Business Research
showed that the current coordinated TD program has saved the
Florida Agency for Health Care Administration as much as $22
million dollars in Medicaid nonemergency transportation costs
during FY 2002.
- Some of the savings were used to expand transportation
services by providing more trips and serving more clients.
- The coordination effort also increased state
and local investments in transportation for persons who were
not previously eligible for specialized services.
- In February 2004, the U.S. DOT awarded the Florida
CTD with one of five United We Ride State Leadership Awards,
recognizing their achievements in improving transportation for
people with disabilities, older adults, and low-income families,
while improving cost effectiveness.
For more information, contact
John P. Irvine
Public Relations Manager
Commission for the Transportation Disadvantaged
605 Suwannee Street, MS-49
Tallahassee, FL 32399-0450
Helpline: (800) 983-2435
Email: john.irvine@dot.state.fl.us
Broward County, Florida, Transportation Options
(TOPS) 94 is an example of coordination at the local level under
the leadership of the Florida CTD.
Broward County introduced
the new coordinated, multiprovider, paratransit service--TOPS--in
December 1996. Services are administered by the local transit
authority and provided by both for-profit and nonprofit agencies.
Funding: During the fiscal
year ending June 30, 2004, more than 67 percent of the funds for
the TOPS program came from monies that the county had allocated
to pay for ADA paratransit costs; 12 percent came from the Florida
CTD and an additional 21 percent came from the state Medicaid
program.
Service: TOPS provides
paratransit service for clients of for-profit and nonprofit agencies
and serves as ADA's complementary paratransit provider. Broward
County Transit (BCT) contracts with seven service providers to
take reservations, schedule trips, and maintain contacts with
riders. Trips are provided in vans and sedans, with more than
300 vehicles in use. The service providers are supplied with computer
hardware and software linking them to BCT's centralized computer
system. All registration, reservations, scheduling, route building,
and billing functions are processed through the system. The services
are provided on a prescheduled, routed, shared-ride basis. In
accordance with ADA, services mirror the hours of operation of
the public fixed-route transit service. The service area now covers
all 437 square miles of Broward County, and provides service within
¾ of a mile from an established Broward County bus route
in neighboring counties. Riders call their designated service
provider to schedule a ride. They are picked up within a 30-minute
window (15 minutes before or 15 minutes after the scheduled pickup
time). It is up to the provider to determine whether same-day
service will be possible. Riders must pay a fare of $2 for each
one-way trip. As of June 2004, more than 31,000 people were enrolled
in the TOPS program. More than 1.3 million trips are made on the
system annually.
Eligibility: Riders must
register with TOPS for paratransit services. They must be ADA
eligible, human services agency clients, or eligible for subsidized
trips provided through Florida CTD program. To qualify for ADA
paratransit, the rider must submit a detailed, multipage application
with a doctor's signature and have an in-person evaluation. The
application process takes three weeks, and eligibility is usually
granted for a three-year period.95
Benefits:
Since 1997, the number of trips provided by TOPS
has more than doubled.
Service quality has improved through mandatory
training sessions of paratransit providers and random quality
of service surveys.
All trip requests are accommodated with a "zero
trip denial" policy.
Riders have an option to change their service provider,
if not satisfied, through the Rider's Choice Program.
In 1998, the American Public Transit Association
named TOPS the best paratransit system in the country.
In 2003, the TOPS program won the Community Transportation
Association of America's (CTAA) President's Award. Also in 2003,
the Florida CTD named TOPS the Urban Community Transportation
Coordinator of the Year.
For more information,
contact
Transportation Option (TOPS)
3201 W. Copans Road
Pompano Beach, FL 33069
Information Line: (954) 357-6794
TTY: (954) 357-8330
Web: http://www.broward.org/tpi02700.htm
- The JAUNT, Inc. Regional Public Transit Agency96
of Central Virginia was formed in 1975 to meet the transportation
needs of area human service agencies. Today, JAUNT serves as
a rural service provider, a leader in commuter transportation,
a coordinated human service agency transporter, and an urban
paratransit provider. JAUNT provides services to the citizens
of Albermarle, Fluvanna, Louisa, and Nelson Counties and the
City of Charlottesville with a fleet of more than 70 vehicles.
Funding: JAUNT, Inc. is
a public corporation owned by the local governments that it serves.
JAUNT uses federal and local funding to supplement fares and agency
payments. Local governments provide 30 percent of its revenue,
the Commonwealth of Virginia provides 14 percent, and federal
sources constitute 25 percent. Agency contracts for service, such
as with Medicaid, account for another 13 percent and Welfare-to-Work
grants provide an additional 10 percent of income. Highly supplemented
fares make up only 8 percent of JAUNT's revenues. JAUNT's operating
and administrative costs for the fiscal year ending June 2004
were $3.6 million.
Service: The system maintains
several weekday commuter routes that give residents job access
in Charlottesville and Albermarle. JAUNT provides ADA paratransit
service for Charlottesville's urban public transit system, which
offers fixed-route service within the city. Service is available
between 6:30 a.m. and midnight, Monday through Saturday, and between
7:00 a.m. and 10:00 p.m. on Sunday. Riders must call in their
trip requests at least 24 hours in advance, although 48 to 72
hours notice is preferred. If previously registered, a traveling
companion or a personal care assistant may ride for free. Guide
dogs and other service animals are allowed to accompany the rider
if indicated on the application. JAUNT provides 1,200 trips every
day. Approximately three-quarters of these trips are for people
with a disability.
JAUNT continues to be the provider of choice for
human service agencies in Central Virginia. Agencies can make
arrangements to have individuals and/or groups of their clients
transported. During FY 2004, JAUNT provided almost 90,000 trips
for agency-sponsored passengers traveling to medical appointments,
supported employment, nutrition programs, and other beneficial
activities. Agencies pay an hourly fee for this service.
Eligibility: Anyone may
ride JAUNT, but reduced fares are available for people with disabilities
after their applications are approved. Visitors from other cities
who are eligible under ADA criteria are welcome to use JAUNT during
visits up to 21 days.
Benefits:
- JAUNT provides transportation services that were
not previously available or affordable to persons living in
rural areas.
- Riders enjoy a substantial cost savings. Fares
for passengers with disabilities range from $1.50 to $5.25,
depending on the length of the trip and whether or not the route
is fixed.
- Coordinated transportation services have saved
money for consumers and public agencies in Central Virginia,
compared to services purchased through private providers.
For more information, contact Donna Shaunesey Executive
Director JAUNT, Inc. 104 Keystone Place Charlottesville, VA 22902
Phone: (434) 296-3184 Email: info@ridejaunt.org Web: http://www.ridejaunt.org/
- The Sweetwater County, Wyoming97 public transportation's
transit authority (STAR) was created in 1989 and replaced a
number of health and human services agency-based transportation
services to form a coordinated public transportation system.
STAR provides transportation to the general public and to agencies
on a contractual basis, and serves the sparsely populated 10,400
square mile area of Sweetwater County in southwest Wyoming.
Funding: STAR has funding
from more than 10 different sources, including state agencies,
employers, and community organizations. STAR is the fiscal agent
for the county's transportation funds and operates with an annual
budget of approximately $500,000.
Service: The transit agency
uses a fleet of 10 vehicles to provide door-to-door service with
no fixed-route operations. All buses and vans are equipped with
wheelchair lifts. STAR uses a central dispatcher to arrange approximately
4,000 rides per month. About 30 percent of all rides are provided
to people with disabilities, and 25 percent to the elderly. The
system is computerized and maintains detailed records on every
trip taken. Before 1995, all rides were free. Fares are now $2.00
for each one-way ride. More than 90 percent of riders have a regularly
scheduled trip, and the remainder book rides a day or two ahead.
The first time someone calls for a ride, he or she goes through
a three-minute interview to be registered in the system's database.
STAR accepts ride requests for all trip purposes, including going
to schools, libraries, movies, and other activities. While riders
must generally call 24 hours in advance of the time they need
to travel, approximately 10 percent of STAR's rides are provided
on a same-day basis. STAR contracts with human services agencies
to provide transportation for clients and bills for trips according
to agency-specific billing rates.
Eligibility: STAR is a
public transportation system, providing service to the general
public and clients of human service agencies.
Benefits:
- STAR has expanded both transportation service
and the pool of people who use it. Trips that formerly were
provided only to agency clients now are open to the general
public. Ridership has increased from 20,000 total trips per
year before the creation of STAR to 46,759 total trips during
FY 2003/04.
- Service is available Monday through Friday from
7:00 a.m. to 5:00 p.m. Some after-hours trips are available
by special arrangement.
- By careful coordination and dispatch, the system
is able to provide door-to-door services at alow cost of about
$7.00 per trip and an average passenger-per-vehicle-hour of
4 to 6 passengers.
- A 1997 U.S. DOT study determined that, through
coordination, Sweetwater County and its municipalities save
more than $1.6 million per year, or $3.50 in benefits for every
$1.00 spent on STAR.
- The STAR model has been recognized nationally
for efficient, affordable transportation service. It is one
of many being implemented across the country focused on coordinating
transportation services to provide more rides with existing
funds.
For more information, contact Judy Owens Director
Sweetwater County Transit Authority (STAR) 1471 Dewar Drive, Suite
123 Rock Springs, WY 82901 Phone: (307) 382-7827 Fax: (307) 352-6896
Email: starbus@fascination.com
Job Access and Reverse Commute (JARC) Programs98
- Allegan County, Michigan, used
its JARC grant,99 with matching funds from the Michigan DOT
and the Family Independence Agency, to start the Allegan County
Transportation (ACT). With additional operating dollars provided
by fee-for-service contracts with Allegan County Community Mental
Health (CMH) and Work First, it offers workers transportation
to jobs and other destinations Monday through Friday from 5:30
a.m. until midnight.
ACT rolled out its Job Access service in 2000, operating
with two vehicles donated by the CMH and Allegan County Resource
Development Committee. Currently, the system has 12 employees
and runs 12 vehicles, 6 of which are lift-equipped. ACT provides
demand-response and advance-reservation service Monday through
Friday from 5:30 a.m. to midnight, with limited additional service
for those who work on weekends.
In FY 2002, the service logged almost 320,000 miles
and provided more than 20,000 trips. About 65 percent of riders
are people with disabilities, most using the service to reach
jobs both in and out of the county. These jobs are largely in
the service industry at hotels, restaurants, discount retail stores,
gas stations, and other locations.
For more information, contact Dan Wedge Director
Allegan County Transportation 3255 122nd Avenue Allegan, MI 49010
Phone: (269) 686-4529 Fax: (269) 673-4172 Email: dwedge@allegancounty.org
- A Santa Clara, California, public/private
partnership formed the Guaranteed Ride Program (GRP) in 1999
to offer CalWORKS (California's Temporary Assistance for Needy
Families program) participants a short-term transportation service
should they need a back-up ride. It provides participants up
to 48 rides per person to work-related destinations. JARC funds100
support this service, along with CalWORKS funds from the county
Department of Social Services. GRP provides door-to-door service
24 hours a day, seven days a week.
GRP is operated by a private nonprofit agency called
OUTREACH.101 OUTREACH is the paratransit broker for the Santa
Clara Valley Transportation Authority (VTA). As the countywide
broker of accessible transportation services, OUTREACH provides
rides to a large portion of county residents with disabilities.
Most of these riders are eligible for the county's ADA paratransit
service that complements the Santa Clara VTA fixed-route bus system.
People with disabilities who enroll in CalWORKS or other training
and support programs for low-income people may be eligible to
take advantage of the OUTREACH Guaranteed Ride Program. Paratransit
riders who typically pay $3.00 each way for a trip have the cost
of the rides subsidized while using this JARC-sponsored service
to get to training, interviews, and jobs.
For more information, contact Kathryn B. Heatley
Chief Executive Officer OUTREACH 926 Rock Avenue, Suite 10 San
Jose, CA 95131 Phone: (408) 436-2865, extension 290 Email: katieh@outreach1.org
- The Rhode Island Public Transit Authority
(RIPTA) used its JARC funds102 to
implement five flexible service demonstration programs in Rhode
Island's low-density suburban and rural communities that provide
people with disabilities with a reliable zoned-based transportation
system. A sixth program has been added with funding provided
by the University of Rhode Island. Called Flex Service, this
program takes riders to work and other destinations within a
defined zone. Passengers can travel outside the zone by using
Flex Service and then transferring to RIPTA's fixed routes or
paratransit services. The transfer costs riders an additional
ten cents. RIPTA's Flex Service is providing more than 160 trips
to work and back per month to people with disabilities (trips
to work and back for people with disabilities are prioritized
and, therefore, tallied; for trips that are not work-related,
however, riders are not asked whether they have disabilities).
In addition, approximately 80 trips per month are provided to
people using wheelchairs.
The need for Flex Service became apparent when a
statewide survey revealed a large unmet need for work-related
transportation for residents with disabilities. Without Flex Service,
individuals with disabilities would pay one-third or more of their
gross salaries on taxis to get to and from work. Other individuals
would have to rely on rides from family members. Those who could
not get transportation would likely remain unemployed.
For more information, contact Anne LeClerc Principal
Planner Rhode Island Public Transit Authority 265 Melrose Street
Providence, RI 02907 Phone: (401) 781-9400, extension 135 Email:
aleclerc@ripta.com Web: http://www.ripta.com/schedules/index.php/section/60
Demand-Response Transit Options: Expansion of Accessible
Taxis103
- In Chicago, Illinois, the
city government provided funds to equip more than 50 new or
used minivans with side door ramps and securement systems, and
developed and offered special training for drivers. Taxicab
companies that have wheelchair-accessible cabs in their fleets
have agreed to participate in a "central dispatch system," which
has a dedicated toll-free telephone number that passengers can
use to request service to provide better and safer taxi transportation
to people with disabilities. The city passed an ordinance requiring
that every fleet of 15 or more taxicabs have at least one accessible
cab in service. The city has also made reimbursements available
to cab companies to defray the differential between the cost
of an accessible, ramp-equipped van and the cost of the usual
sedan. The Chicago Transit Authority also has two separate taxi
voucher programs that provide people with disabilities trips
in accessible taxis.
A few years ago, when 300 new taxi medallions104
were made available in San Francisco, California,
50 of them were specifically slated for wheelchair-accessible
vehicles As of 2004, 75 of San Francisco's taxi medallions were
set aside for accessible vehicles.
In Fort Lauderdale, Florida,
the owner of the Yellow Cab company incorporated accessible
taxicabs into his fleet nine years ago, because he had a friend
who used a wheelchair and had trouble getting a cab. Currently,
approximately 20 of the 500 taxicabs in his fleet are accessible.
Los Angeles, California, requires
that 2 percent of taxi company fleets consist of accessible
vehicles. Currently, 127 of the city's 1,931 taxicabs are accessible.
In Las Vegas, Nevada, 2 vehicles in
each of its 14 fleets need to be accessible. There are 28 accessible
cabs out of 1,100 in the city.
In Long Beach, California,
the transit authority purchased 12 new ramped, wheelchair-accessible,
5- and 6-passenger vans in 1999 and leased them to Yellow Cab
of Long Beach for a nominal monthly fee, provided Yellow Cab
operates the vehicles as part of its regular 24-hour taxicab
service.
Tax Support for Improved Transit
In a successful effort led by disability advocates,
the faith community, and other CBOs, residents of six cities in
Kent County, Michigan, passed a millage105 increase to fund expanded
transportation services that benefit many segments of the population.
David Bulkowski, J.D., executive director of Disability
Advocates of Kent County, Grand Rapids, Michigan, calls October
1996, the "low point" in Kent County's recent transportation history.
Although the creation of a Transit Authority to address the county's
public transportation issues was supported by disability advocates
and other groups in the county, the County Commission voted that
month against it. Disappointed but not defeated, the disability
community held a People's Transportation Forum and Barbecue to
raise awareness about transportation issues in the community and
brainstorm ways to make the system better. Thus began a well-organized,
multiyear grassroots effort to expand and improve transportation
service in the county.
Grand Rapids, the county's seat and urban center,
is often called the "city of churches," because of its many houses
of worship, as well as the presence of Aquinas College and Calvin
College, so it was natural for Bulkowski, who had spent 11 years
in a Catholic seminary himself, to turn to his friends in the
faith community for support in pushing forward the transportation
agenda. In the spring of 1999, Faith in Motion--"a coalition of
religious organizations working for better public transportation"--got
started. One of the first events the group held was a prayer service
across the street from a Grand Rapids bus station at 6 p.m.--the
hour when public bus service stopped for the day, resuming at
6 a.m. the next day. According to Bulkowski, there was "No evening
service, and can you believe that in the ‘city of churches'
there was no Sunday bus service either?" The ministers, rabbis,
seniors, business owners, people with disabilities, and other
community members attending the prayer service wanted to send
a message to the city government that transportation is not only
a means for moving people from one place to another but also "an
engine for economic prosperity that benefits everyone," says Bulkowski.
Friends of Transit, a broad-based community group,
raised $100,000, mostly from church-based donations solicited
by Faith in Motion, to support lobbying efforts. In the summer
of 1999, mayors from six cities in the county, who were in favor
of expanded transportation service, proposed raising the millage
for transportation from 0.3 mills (the figure at that time) to
0.75 mills to support the expansion. The proposal was put to a
vote in the spring of 2000 and it passed in four of the six cities--"a
major accomplishment given that this area is very conservative
in terms of taxation," says Bulkowski. The bus fleet serving the
area was already fully accessible, but, says Bulkowski, the new,
expanded evening and Sunday service in the four cities opened
up a whole new world to people with disabilities, older people,
and others in the community. By the fall of that year, public
transportation ridership in Grand Rapids and surrounding cities
was outpacing national averages.
The millage renewal was slated for 2003. Because
of decreased state funding for transportation, some advocates
argued that to keep service where it was, or improve it slightly,
a raise would be necessary. Rallies were held at meetings of the
Rapid Board, the public transportation authority in the greater
Grand Rapids area, asking the Board to propose increasing the
millage to 1.0 mills. When all was said and done, an increase
to 0.95 mills was put on the ballot, and this time it passed in
all six cities.
Not content to rest on their laurels, transportation
advocates in the Grand Rapids area, which now include Concerned
Citizens for Improved Transit (a coalition of disability advocates
and organizations for the cognitively impaired, visually impaired,
and others) and the Emergency Need Task Force Transportation Sub-Committee
(senior advocates, health care, and other services providers),
have set their sights on other needed improvements. Bulkowski
explains:
A continuing issue is that buses drop people off
in areas where there are no curbs, and we've been addressing this on an individual-by-individual
basis. We got these new electronic fare boxes that use fare cards with magnetic
strips, but they are not accessible for people with visual and cognitive impairments
because they either cannot see or cannot understand how much fare is left on their cards.
We're also working on the county to make transportation a county-wide issue rather than
approaching it city by city.
If their past success is any indication, these active
CBOs will eventually solve these remaining problems, too.
For more information contact David Bulkowski Disability
Advocates of Kent County 3600 Camelot Drive SE Grand Rapids, MI
49546 (616) 949-1100 Phone (616) 949-1100 TTY Email: dave.b@disabilityadvocates.us
Advanced Technology to Improve the "Navigability"
of Public Transit
- Inspired by a California inventor, Charlotte,
North Carolina, is pilot-testing an innovative program with portable
devices that use global positioning system (GPS) satellite technology
to empower people with visual impairments to better navigate the
city's public transportation system.
Michael May, blind since he was three years old,
had more than just transportation in mind when he spearheaded
the development of the first handheld devices that use GPS satellite
technology to make location information readily available to the
blind. According to May, "Not having the information you need
to get around is what determines your blindness. Traditionally,
the way blind people got direction was ‘walk five blocks,
turn left, walk three blocks,'" says May, "But what about what's
on the way? If you don't know about a restaurant, you can't go
there. Accessibility is about having options."
May founded the Sendero Group (http://www.gps-talk.com/)
in 1994 with four other blind and visually impaired professionals.
The BrailleNote GPS and talking GPS systems that they produce
and/or distribute provide blind people with access to a vast database
of location information for businesses and points-of-interest
in towns and cities across the globe. Those with the devices can
also input "user points" containing information relevant to them
personally. Many user points, such as guide dog schools and physical
obstacles, may be particularly relevant to people with visual
impairments, and these user points can be downloaded without cost
by anyone who has a GPS system. In 2000, May regained some vision
after surgery, but he explains, "The GPS gives me more access
than what I can get from my low vision. I still can't read a sign
or see places that are far away."
May and his team have partnered with the Charlotte
Area Transit Service (CATS) and the Metrolina Association for
the Blind (MAB) to launch the first system that provides comprehensive
bus-stop location and route information tailored specifically
for the blind and severely visually impaired. Laura Park-Leach,
vice president and director of Personal Adjustment & Rehabilitation
for the Metrolina Association for the Blind, explains that blind
people need to know more than just the location of bus stops for
the public transit system to be truly accessible to them. "They
need to know if the bus stop will have a shelter, a bench, or
just a pole. Will there be a large tree or a hill nearby? They
need to know where the bus goes and when it will come. They also
need to know what to expect when they get off of the bus."
The transfer of bus information to GPS users is
just one part of a larger effort by CAT and MAB to get relevant
information to the blind and visually impaired. Park-Leach, a
mobility specialist, explains:
The GPS system appeals to youth and technically
savvy people, but we also want to reach
the broadest population possible. That's why the
same type of information will be
available through CATS customer service. People
can call in from home or from their cell
phones, and customer service agents will be trained
to know what information visually
impaired people need and why.
Data also will be available on the Web so that visually
impaired customers can plan trips in advance. MAB is in the process
of obtaining digital photos of each bus stop in Charlotte so that
mobility specialists can examine them to identify relevant landmarks
and obstacles. The organizations are advising the city on how
to collect more relevant data in the future.
When detailed bus route information is made available,
The BrailleNote GPS and talking GPS systems can be used in two
ways. For example, if users want to find a restaurant on their
way to work, they can request a search that gives them a list
of all restaurants, say, 300 yards away from their bus route.
Alternately, users can request a search for a restaurant in the
city. They then choose a restaurant and set it as their destination.
The system calculates the best route to the restaurant and directs
users to the nearest bus stop. The system also provides a wealth
of information about each bus stop area and informs users when
to expect the next bus. They also can access information about
other businesses or landmarks on the way to the restaurant.
Park-Leach explains that the pilot project in Charlotte
has been extremely inexpensive, "The city already collects this
data. It is just a matter of transferring it, which does not cost
much at all." In fact, Park-Leach says, this project could potentially
save the city money. "Although there will always be a need for
paratransit services, many people will shift to using the less
expensive fixed-route system if they have a truly accessible system,"
says Park-Leach, "People will have more freedom, but they need
security, especially if they are going somewhere that they don't
know."
May is working on a similar project with officials
from Portland, Oregon, and many other cities have expressed serious
interest. He explains:
Access is about infrastructure and what people can
do for us, but it's also about our own empowerment. Access to
information enriches the travel experience. It's like comparing
a two-wheel drive car to a four-wheel drive car. In a two-wheel
drive car you stay on the main road and don't get into trouble.
In a four-wheel drive car you get off the main road. You may get
stuck, but part of the adventure is getting around on your own.
Figure 2. Woman using the
BrailleNote GPS system while in transit.
Figure 3. Graphic of the
BrailleNote GPS v3.
Photographs, courtesy of Mike May, are available
on the Sendero Group's Web site at http://www.gps-talk.com.
Chapter 4: Adjust the Physical Environment for Inclusiveness
and Accessibility
In 1996, Michele Ohmes, who
is Kansas City, Missouri's, ADA/Disability Specialist, gave her
first presentation to the American Public Works Association (APWA)
at their International Public Works Congress in Minneapolis. That
evening, the Kansas City Metro Chapter of the APWA arranged a
dinner at a local riverfront restaurant. When Ohmes and her boss
arrived at the building where the restaurant was located, they
found that the building entrance was up a flight of stairs--an
obstacle for Ohmes, who uses a wheelchair. So they walked around
the building in search of an entrance with a ramp that Ohmes could
use. They finally found a way to enter the building, only to face
another obstruction--several sets of steps that needed to be negotiated
to reach the restaurant entrance. Short of leaving, Ohmes had
no other option--she had to crawl up the stairs while her colleagues
carried her chair.
While Ohmes deals with such situations daily, the
experience made an enormous impression on the APWA leadership,
who heard the story from Ohmes' colleagues. Those who arranged
the dinner realized they had made a mistake in not checking out
the restaurant for accessibility beforehand, and, as a result
of this incident, the APWA has made accessibility its priority
in planning all subsequent major events. Reflecting on the incident,
Ohmes says she believes that the world is full of good people
who simply don't understand the importance of accessibility for
people with disabilities until they have a personal experience
with it, as her colleagues had in Minneapolis. But with training,
she says, it is possible to raise their awareness and "change
the world."
A simple act that most of us take for granted--like
entering a building or going out to dinner-- can become quite
complicated if you use a wheelchair or have other disabilities
that affect mobility. Shopping in a supermarket, attending a sporting
event, going to a doctor's office, traveling out of town, renting
a car, staying in a hotel--in short, doing many ordinary, everyday
things can become fraught with frustration when "public accommodations"
have not successfully removed barriers to use by people with disabilities.
Access to civic life by people with disabilities
is one fundamental goal of ADA, which was passed in 1990. Title
II of ADA requires state and local governments to make their programs
and services accessible to people with disabilities. This includes
providing physical access at government facilities, programs,
and events. It also includes making policy changes to ensure that
all people with disabilities can take part in, and benefit from,
the programs and services of state and local governments. And
it ensures effective communication through the provision of necessary
auxiliary aids and services, such as interpreters or assistive
listening devices, to people with disabilities to facilitate their
participation in public events and meetings. Title III of ADA
addresses access to privately owned businesses, such as stores,
restaurants, hotels, theaters, museums, schools, and recreational
facilities. Under this section of the law, public accommodations
that provide goods and services may not discriminate against individuals
with disabilities. The U.S. Department of Justice is responsible
for enforcing these two sections of ADA.106
To be sure, since the passage of ADA, noticeable
accommodations have been made in communities large and small to
improve access for people with disabilities, although perhaps
not as many or as quickly as some advocates would like. Judging
by the steady stream of ADA-related complaints received by the
Department of Justice's Disability Rights Section (DRS)107 and
the long list of settlement agreements that the Department has
negotiated with communities throughout the country, many communities
do not make access-related changes until (1) someone lodges a
complaint, (2) the Department gets involved, and (3) a remedy
is negotiated and then implemented.
In 1999, for example, the Department of Justice
reached a settlement with the City of Toledo, Ohio, in which the
city agreed to remove barriers and relocate activities throughout
its city government, including the municipal courthouse, district
and neighborhood police stations, a market-outlet complex, fire
stations, parking garages, museums, community and social services,
the city's parks and recreation centers, the health department,
and other city administrative buildings. Building on that settlement,
then-Attorney General Janet Reno asked the DRS to ensure that
other cities across the United States address these important
issues as well. In response, the DRS established "Project Civic
Access" 108 and began similar reviews of other local and state
governments. The DRS selected at least one city in each of 50
states to visit and review, as well as two departments in the
District of Columbia and two communities in Puerto Rico, and developed
technical assistance materials so that the communities could immediately
begin to come into full compliance with ADA requirements. These
on-site investigations have concluded in the chosen communities
and settlement agreements with all of the communities were reached
by October 2004.
Although the scope of this effort was limited, the
DRS quickly translated its experience with the chosen communities
into lessons learned and technical assistance materials for other
communities. Among these technical assistance materials is a useful
manual that identifies common misconceptions and problems found
in local governments that must comply with Title II of ADA.109
According to the DRS, city governments--
- May (wrongly) believe that their existing programs
and facilities are protected by a "grandfather" clause from having
to comply with the requirements of Title II of ADA. Small municipalities
may (wrongly) believe that they are exempt from complying with
Title II because of their size.
- Often fail to ensure that the whole range of the
city's services, municipal buildings, and programs meet Title
II's program access requirements.
- May (wrongly) believe that they have no duty to
make changes to historically significant buildings and facilities
to improve accessibility for people with disabilities.
- Often do not provide necessary curb ramps to ensure
that people with disabilities can travel throughout the city in
a safe and convenient manner.
- Often fail to provide qualified interpreters or
assistive listening devices for individuals who are deaf or hard
of hearing at public events or meetings. In addition, city governments
often fail to provide materials in alternate formats (Braille,
large print, or audio cassettes) to individuals who are blind
or have low vision.
- May fail to consider reasonable modifications to
local laws, ordinances, and regulations that would avoid discrimination
against individuals with disabilities.
- Do not provide direct and equal access to 911 systems,
or similar emergency response systems, for individuals who are
deaf or hard of hearing and use TTYs (TDDs or text telephones)
or computer modems.
- Often fail to modify policies, practices, or procedures
when dealing with people with disabilities in law enforcement
settings--including citizen interaction, detention, and arrest
procedures.
Private businesses have much to learn about increasing
accessibility as well. Fortunately, ample resources are available
to inform and guide the business community about complying with
accessibility regulations, if they are willing to do so.110 In
many cities, including some of those profiled below, disability
advocates and/or city agencies have developed and disseminated
their own accessibility standards, which often go beyond ADA guidelines,
and serve as consultants to developers who wish to ensure that
their buildings will be accessible. Some communities even provide
financial assistance to businesses to upgrade their accessibility.
Cambridge, Massachusetts, for example, established a Façade
Improvement Program that provides businesses with matching grants
of up to $35,000 for façade improvements, which may include
improved access for customers with disabilities, as well as the
restoration of architectural details, better windows and doors,
and well-proportioned signage and lighting. Over the past 10 years,
dozens of Cambridge businesses have received matching grants and
have been made accessible in the process.111 Cambridge's Commission
for Persons with Disabilities provides guidance to business owners
on ways to maximize accessibility for customers with disabilities
and provides information on federal tax breaks available to small
businesses that remove barriers to access.112
In communities large and small, one of the greatest
obstacles to improving access for people with disabilities is
the expense associated with altering the built environment and
making other needed accommodations, as the example of Nashville,
Tennessee, demonstrates below. In addition to cost, in larger
cities or towns, as the Kansas City, Missouri, example shows,
the sheer volume of work to be done causes delays in making necessary
changes, and complaints arise when they are not made quickly enough.
In older communities where many historic structures need to be
retrofitted to make them accessible, conflict sometimes arises
between preservationists who worry about compromising the authenticity
of the structures and disability advocates whose primary objective
is to increase access. According to Dennis Pratt, Architect and
Accessibility Specialist at Alpha One in Maine and 1 of 12 members
of the public appointed by the President to the Access Board,113
lack of awareness is by far the biggest obstacle to progress.
"The biggest barriers are attitudinal," he says. "When people
are sensitive to access issues for people with disabilities, they
are more willing to do things to improve the environment." 114
In an effort to heighten awareness among people
without disabilities about the barriers that people with disabilities
face every day, disability advocates in some communities have
implemented "sensitivity training" for the public and elected
or appointed officials. In Bloomington, Indiana, for example,
the Council for Community Accessibility (CCA) runs a program that
gives people without disabilities the opportunity to spend the
day navigating in a wheelchair or wearing dark glasses to simulate
the experience of low vision. Program participants have included
the mayor, deputy mayor, city department heads, and staff members
of the Parks and Recreation Department, Public Works Department,
and Street Department. During his training session using a wheelchair,
Bloomington's former Mayor John Fernandez got stuck in an inaccessible
inner entrance door to City Hall; subsequently, an automatic door
was installed.
Citizen complaints arising from experiences like
Mayor Fernandez's are often the impetus for change in the community.
A better approach to increasing accessibility, however, would
be ongoing investment in a built environment based on universal
design principles that benefits everyone in the community. While
we may be far from this larger, desirable goal, it is evident
that community improvements made as a result of the passage of
ADA are touching the lives of people without disabilities as well
as those of people with disabilities. Standing on a busy city
street corner, for example, one is more likely to see curb ramps
being used by mothers pushing baby strollers and kids skateboarding
than by people in wheelchairs. Doors that open automatically or
with the touch of a button are just as useful to older people
with limited strength and anyone carrying packages as they are
to people with disabilities. Investment in and acceptance of alterations
to the built environment may be an easier "sell" when their value
to the community at large is apparent.
Despite the obstacles to making communities more
"disability friendly," such as those mentioned above, some cities
and towns around the country have made this issue a priority and
are addressing it in creative ways. Following is a sampling of
some of these "best practices."
As a college town, Bloomington/Monroe County, Indiana,
involves university students in efforts to raise awareness about
accessibility issues and certifies businesses that comply with
accessibility guidelines.
Building on ADA accessibility guidelines, the CCA,
which provides oversight to the Community and Family Resources
Department of the City of Bloomington, created the AccessAbility
Decal Program to evaluate and certify businesses and buildings
for accessibility. The CCA developed a two-page screening tool
that enables evaluators to rate how well businesses in Bloomington
are addressing such things as parking, access routes, entrances,
elevators, stairs, interior and exterior common areas, public
restrooms and drinking fountains, outdoor dining facilities, and
customer service and employment. CCA formed a partnership with
Indiana University and designated interior design students as
evaluators who go into the community to review businesses using
the screening tool. Generally, CCA picks a category--such as restaurants
or clothing stores--then assembles a list of local businesses
in the chosen category and sends the students out to evaluate
the businesses on the list. Sometimes, however, businesses request
an evaluation.
Following each of the evaluations, a letter detailing
necessary improvements is drafted by the Community and Family Resources Department, signed
by the CCA chairperson, approved by the city's legal department, and sent
to the business owner, who voluntarily makes the recommended improvements. A representative
from the Community and Family Resources Department or a volunteer from
the CCA will reassess the business until all the improvements have been made. When
improvements are successfully completed, an "AccessAbility Decal" is awarded to
the business at a public ceremony. These colorful 4" x 6" decals (see Figure 4) can
be displayed in a conspicuous place such as the front door or a window to notify the public
of the business's new status. The first decal was awarded in 1993, and about 80 decals have
been awarded to date.
Future plans for this project are to form a partnership
with Ivy Tech College and train architecture students to conduct
the reviews as well. In addition, in mid-2004, the Chamber of
Commerce's Diversity Committee will issue a 16-page booklet designed
to inform businesses about ADA accessibility requirements. The
booklet includes a copy of the survey and contact information
for CCA so that businesses can request reviews, thus potentially
expanding the reach of the decal program to hundreds of businesses.
For more information, see the City of Bloomington,
Indiana, Web site at http://bloomington.in.gov/egov/apps/services/index.pl?path=details&id=903&action=i&fDD=1-303.
Figure 4. Sample of the AccessAbility Decal signifying
that a business meets accessibility requirements of the Council
for Community Accessibility (CCA) in Bloomington/Monroe County,
Indiana.
In Kansas City, Missouri, a dedicated curb ramp crew
ensures that streets are made accessible for people with disabilities.
When the Deputy Director of Public Works in Kansas
City learned from Michele Ohmes, the city's ADA/Disability Specialist,
of long delays in constructing and servicing curb ramps in the
city, he called together staff members from the Engineering Division
and the Streets and Traffic Division to discuss what could be
done about the problem. The director of the Streets and Traffic
Division had an idea for solving it but, concerned about using
resources wisely, he first asked Ohmes whether she believed that
a dedicated curb ramp crew could be kept busy in Kansas City.
Curb ramp targets in the city had not been met for the past three
years and there was quite a backlog, so Ohmes quickly assured
him that a crew could be kept very busy. Now, with a dedicated
crew, citizen requests for curb ramps are usually met within one
month, and sometimes in as little as one week. Citizens send requests
for curb ramps directly to Ohmes or to the city's Action Center,
a central point of contact for city services, which forwards them
on to Ohmes. When there is a lull in requests from residents,
Ohmes directs her crew to work in areas that she has identified.
Since the program was initiated in 2000–01, approximately
400 curb ramps have been completed along thousands of miles of
roadway.115
For more information, contact
Michele S. Ohmes
Email: Michele_Ohmes@kcmo.org
For information, see Ohmes' book ADA
and Accessibility, Let's Get Practical,published by the
American Public Works Association, available at www.apwa.net.
The Nashville, Tennessee, Comprehensive Sidewalks
Program is an ambitious plan that not only makes the city more
accessible for people with disabilities but improves quality of
life for all of Nashville's residents.
As the Kansas City example demonstrates, it is often
a big challenge for a large metropolitan area to alter and repair
sidewalks to be ADA compliant. However, it requires a tremendous
effort to ensure accessibility for people with disabilities when
much of a city has no sidewalks at all. Such was the case in metropolitan
Nashville, Tennessee, but building and improving the sidewalks
of Nashville and Davidson County has been a primary goal for Mayor
Bill Purcell, first elected in 1999, and then reelected in 2003.
In 2002, after a yearlong commissioned study during
which the streets and every foot of Nashville's 727 miles of sidewalk
were assessed and community members were surveyed, the Mayor's
office unveiled the "Nashville-Davidson County Strategic Plan
for Sidewalks and Bikeways." 116 The plan was prepared by outside
contractors under the direction of a Citizen's Advisory Committee
(CAC) that includes advocates for people with disabilities, a
physical therapist, community health specialists, avid walkers,
and cyclists. In the final plan, a detailed scoring system was
devised to prioritize all sidewalk repair and construction projects.
Priorities are chosen based on the necessity of the project for
ADA compliance, the number of people affected, the types of people
affected (e.g., children, seniors, and people with disabilities),
and whether the projects provide access to key services identified
in public opinion surveys, such as schools, libraries, parks,
stores, senior centers, and assisted living facilities. The plan
originally scheduled all projects for completion by 2015, assuming
at least $20 million per year could be allocated for this purpose,
with 1.5 percent yearly increases to account for inflation and
rising costs.
Public input has been incorporated at all stages
of the planning process and continues to be highly valued. The
Comprehensive Sidewalk Program's Web page (http://pw.nashville.gov/WEBPROD/SidewalkMain.asp)
encourages public feedback and questions and includes an interactive
map of Nashville that shows all sidewalks and the proposed schedule
of both sidewalk repair and sidewalk construction projects.117
A series of public meetings were held at the beginning of the
project, and the plan calls for a new series of meetings to be
held every two years to reevaluate the priority ranking system
and alter it, if necessary. In addition, before the design process
begins, a public meeting is held for each block scheduled to have
new sidewalks built to reassess public support for the project.
It is particularly difficult and expensive to add
standard sidewalks to streets with public rights-of-way118 that
cannot easily accommodate them. Streets are often too narrow,
or obstructions such as trees, mailboxes, or drainage ditches
may complicate the construction of sidewalks. In these cases,
property owners might be asked to donate or sell additional right-of-way
to the city (in Nashville, the city government has full jurisdiction
over existing rights-of-way, including all sidewalks), or creative
design solutions need to be considered.
In some cases, arrangements are made to provide
access for seniors and people with disabilities, even if the project
does not score high in the priority ranking system. One example
is Old Hickory Towers, a high-rise apartment complex for older
people in an industrial neighborhood. The only way residents can
access nearby neighborhood stores is to walk alongside heavily
trafficked Robertson Road, which does not have a sidewalk. The
plan to build sidewalks on Robertson Road was not given high priority
through the strategic plan's ranking system, because the only
people directly affected are the residents of the high-rise itself.
However, according to Renee Jackson, Sidewalk Program Manager
for the Department of Public Works, "It was dangerous for people
to go up and down a busy street in electric-powered wheelchairs,
and we didn't want people to risk life and limb." 119 City officials,
working with the building management and residents, considered
several options for decreasing the danger, including a proposal
to arrange for the Metropolitan Transit Authority to provide seniors
with rides to local stores. Ultimately, it was decided that the
best and most cost-effective interim plan was to create a walkway
on the grounds of the complex itself to connect existing pathways
to a less busy side street with access to a grocery store and
several other shops. The city subsequently acquired an easement
from Old Hickory Tower's owners to build the path on their property.
"The chosen plan provides more freedom for building residents
than the plan to provide rides through the Metropolitan Transit
Authority," says Jackson, "And the new path will also be a great
place for residents to exercise."
Jackson explains that the biggest problem with completing
proposed sidewalk construction is funding. Fifty-five million
dollars has been spent on sidewalks since 1999, and Mayor Purcell
was able to secure an additional $20 million for sidewalk construction
in the city's Capital Plan for FY 2003/04. However, because of
a budget crunch, only $5.75 million was allocated to the program
for FY 2004/05. According to Jackson, this funding will be used
to finish the process of making existing curb ramps compliant
with ADA regulations. Jackson says that the hardest part of her
work is not knowing how much funding to count on each year, and
explaining to community members why their needs cannot be addressed right away:
We explain to them how the ranking process works
and tell them how to get involved, but there are budget constraints.
Still, we know what the needs are because the strategic plan is
in place. It's just a matter of checking things off the list.
In Portland, Maine, providing access to historic
buildings for people with disabilities is a challenge that has
been successfully--and cleverly--met.
Portland, Maine, is generally a disability friendly
city where the local government-- including the agencies that
have jurisdiction over historic properties--the business community,
and the public support accommodations for people with disabilities.
For example, the city is quite lenient in granting variances to
zoning ordinances so that businesses and private homes of people
with disabilities can be made more accessible. As a busy port
city, with a lot of ferry and international boat traffic, Portland
has invested a good many resources in making its ferry terminals,
dock facilities, and boats that serve the surrounding islands
accessible to people with disabilities, providing ramps and ingenious
lift systems to board people with wheelchairs and accessible bathrooms
at the dock and on the ferries. As an old city with many historic
structures, Portland has successfully adapted some of these buildings
to make them accessible to people with disabilities, often using
innovative technical solutions. A case in point is the Portland
Observatory.
Built in 1807, the Portland Observatory is an octagonal
86-foot-high tower that served as the communication station for
Portland's busy harbor. Using a powerful telescope at the top
of the Observatory, Lemuel Moody (1768–1846), the sea captain
and entrepreneur who had the tower built, was able to identify
incoming ships up to 20 miles away. He then raised flags to signal
local merchants, who would have time to hire crews and reserve
berths before the ships docked. Lemuel also used his telescope
to make 24-hour weather forecasts for the Portland area. The tower
ceased its "signalizing" operations in 1923. By the early 1990s,
engineers discovered that seeping moisture and powder post beetles
had done so much damage to the structure that it seemed on the
verge of collapse. Several years later, the Portland Observatory
Restoration Trust raised $1.28 million for restoration of the
tower, which started in 1998 and was completed in 2000. The Observatory
is now a museum.
To conduct the restoration project, the Observatory
was virtually dismantled and rebuilt. Access to the building entrance
is not on the ground floor, but up a steep exterior staircase
that visitors must climb to get to the entrance door on the first
floor. From there, visitors must climb additional flights of stairs
to get to the top of the observatory. There was no room to add
an interior elevator to facilitate access to the entrance on the
first floor or to take people to the very top, so an ingenious
solution was devised: People with disabilities were provided access
to the first floor of the structure, where, using alternative
formats, they could experience what visitors who climb to the
top of the Observatory actually see.
First, at one side of the building, $100,000 was
spent to install a lift that emerges out of the ground at the
push of a button to take passengers to the first floor entrance.
There, passengers disembark onto a deck that takes them to the
same first floor entrance that all visitors use to get into the
building. Once inside, visitors who are able to climb the stairs
to the top can do so. Those who cannot climb nonetheless are able
to see the 360-degree view from the top with the help of a real-time
Web cam supplemented by graphics and photographs that are on exhibit
on the first floor. In fact, anyone interested in seeing the view
from the Observatory can access the Web cam by logging onto www.portlandlandmarks.org.
A photograph on the same Web site shows the location of the exterior
lift and deck at the side of the building. In 2001, the National
Trust for Historic Preservation bestowed a well-deserved Preservation
Award to the Portland Observatory project.
Chapter 5: Provide Work, Volunteer, and Education
Opportunities
Many people with disabilities
are able to find jobs on their own, in the same manner as their
counterparts without disabilities--for example, through personal
contacts, employment fairs, and internships. Others seek assistance
in preparing for and finding work through state vocational rehabilitation
programs.120 Social Security's Ticket to Work (TTW)
program offers people with disabilities a third option. TTW is
a work incentive program designed for people with disabilities
who receive SSI or Social Security Disability Insurance (SSDI)
benefits, with the goal of financial self-sufficiency. In many
cases, it is possible for beneficiaries to reduce their Social
Security Administration (SSA) cash benefits to zero and maintain
their Medicaid, Medicare, and HUD rental subsidies. Under the
TTW program, employment services are provided by Employment Networks
(ENs) that are under contract with the SSA to provide employment-related
services to individuals with disabilities seeking to become self-sufficient.121
Like millions of other Americans with disabilities
receiving SSA benefits, Marie122 received her TTW in the mail.
She investigated the ENs in her area and applied for services
from Alpha One. Alpha One, based in South Portland, Bangor, and
Presque Isle, Maine, is a Center for Independent Living as well
as an EN. At Alpha One, Marie met with Zahira and Gary, Employment
Coordinators/Benefit Specialists, to begin the process of developing
an Individualized Work Plan (IWP)--"a consensus between the individual
and the EN on the individual's employment goals and the methods
used to achieve them." 123
From the EN perspective, it was imperative that
Marie understand fully the provisions of the TTW program and the
effects of employment on her existing SSA and other benefits.
They began by cataloguing all of Marie's benefits to determine
the effects of work on each of them. The result of this thorough
assessment was a work plan or "guide to independence," as Alpha
One calls it. This document outlines the steps that Marie will
take to reach her goals of employment and financial independence.
Marie's Employment Coordinators/Benefit Specialists stressed the
importance of reporting all work activity to SSA and related state
and federal agencies. Marie was given detailed information on
how to do this as well as template forms to make the reporting
less confusing. In addition to the steps related to securing employment,
Marie's completed IWP contained plans for repairing her credit
history, funding for car repair so that she could travel to work,
and the use of work incentives related to her HUD-subsidized housing
voucher, Medicaid, and child care subsidies.
In terms of her work preparedness, Marie is a high
school graduate with some part-time work experience in retail.
She contacted Alpha One to explore the TTW option with a very
clear goal in mind--to work in a retail business that offered
management training so that one day she could become a store manager.
On her own, Marie found a full-time job at a local retail store.
She is now on a management-training track and her goal seems well
within reach.
A fundamental principle of Title I of ADA is that
people with disabilities who want to work and are qualified to
work must have an equal opportunity to work.124 The employment
provisions under ADA apply to private employers, state and local
governments, employment agencies, and labor unions.125 Employment
nondiscrimination requirements went into effect on July 26, 1992,
for employers with 25 or more employees, and July 26, 1994, for
employers with 15 or more employees. The requirements apply to
all employment-related activities such as recruitment, advertising,
job applications, hiring, firing, layoff, leave, advancement,
compensation, fringe benefits, training, and tenure.126 The Equal
Employment Opportunity Commission (EEOC) enforces compliance with
ADA's Title I employment provisions. In FY 2002, for example,
the EEOC received 15,964 complaints of disability discrimination,
resolved 18,804 charges, and recovered $50 million in monetary
benefits, not including monetary benefits obtained through litigation.127
A qualified individual with a disability who wants
to work must meet the skill, experience, and education requirements
of the job and be able to perform the duties with or without "reasonable
accommodation." Reasonable accommodations are any changes to the
work environment that allow people with disabilities to carry
out job functions or have equal access to benefits available in
the workplace.128 Common accommodations include the following:
- Physical changes (e.g., installing a ramp; modifying
a workspace or restroom)
- Sign language interpreters for people who are deaf
- Readers for people who are blind
- Quiet workspaces to reduce distractions for people
with mental disabilities
- Training and written materials in accessible formats
(e.g., Braille, audiotape, computer disk)
- TTYs for telephones
- Hardware and software to make computers accessible
for people with vision impairments, or who have difficulty using
their hands
Employers are required to make accommodations for
qualified employees or job applicants as long as they do not impose
an "undue hardship." An undue hardship is "an action requiring
significant difficulty or expense" in light of the nature and
cost of the accommodation relative to the size, resources, and
structure of the employer's operation. Thus, larger businesses
are expected to expend greater effort and expense in providing
accommodations than smaller businesses.129
A 2003 "Work Trends Report" by the John J. Heldrich
Center for Workforce Development at Rutgers University found that
only one of four (26%) businesses employed at least one person
with a disability.130 According to the report, common reasons
that employers don't hire people with disabilities include the
following: discomfort hiring people with disabilities; perceptions
that people with disabilities cannot perform the kinds of jobs
they have; beliefs that jobseekers with disabilities lack skill
and experience; and lack of physical accessibility and fear of
the cost of reasonable accommodation.131 At the same time, the
report provides data that addresses at least some of these reservations.
For example, 73 percent of employers report that employees with
disabilities did not require accommodations. Of those employers
that did provide accommodations, 61 percent reported that the
average cost of the accommodation was $500 or less; 29 percent
reported the cost was less than $100. Moreover, the report cites
a 30-year study conducted by the Dupont Corporation that found
that 90 percent of workers with disabilities had above-average
job performance, attendance, and safety records.132
Although there has been a small increase over the
last decade in the percentage of adults with disabilities who
are employed,133 the unemployment rate among adults with disabilities
is still unacceptably high. The 2004 N.O.D./Harris Survey of Americans
with Disabilities shows that working-age adults with disabilities
are half as likely as working-age adults without disabilities
to be employed (35% versus 78%),134 and people with severe disabilities
are less likely to be employed than those with slight disabilities
(21% versus 54%).135 Sixty-three percent of unemployed adults
with disabilities say they would like to work,136 but obstacles
to finding appropriate employment abound. According to the 1994–95
National Health Interview Survey,137 the most common obstacles
include the following: no appropriate jobs available, lack of
transportation, lack of appropriate information about jobs, inadequate
training, and fear of losing health insurance or Medicaid.
The Federal Government has instituted tax incentives
for employers and has established several initiatives and programs
to help increase employment opportunities for people with disabilities:
Tax Incentives
Tax credits are available for small and larger businesses
that remove architectural barriers, and for businesses that employ
people with disabilities referred from rehabilitation agencies:138
- The Disabled Access Tax Credit provides "eligible
small businesses"139 with a 50 percent tax credit for "eligible
access expenditures" above $250 that do not exceed $10,250 for
a taxable year. Examples include removal of architectural, communication,
physical, or transportation barriers; making written materials
accessible to people with visual impairments; making oral materials
available to people with hearing impairments; or acquiring or
modifying equipment or devices for people with disabilities.
- With the Tax Deduction to Remove Architectural and
Transportation Barriers to People with Disabilities and Elderly
Individuals, the Internal Revenue Service allows a deduction up
to $15,000 per year for expenses used to make a facility or public
transportation vehicle owned or leased by a business accessible
and usable by people with disabilities.
- The Targeted Jobs Tax Credit allows employers to
receive a tax credit up to 40 percent of the first $6,000 of first-year
wages of a new employee with a disability referred by state or
local vocational rehabilitation agencies, State Commission on
the Blind, or the U.S. Department of Veteran Affairs, and certified
by a state employment service. An employee must complete 90 days or 120 hours of employment
for his or her employer to qualify for the credit.
New Freedom Initiative
One of the goals of the NFI is to integrate Americans
with disabilities into the workforce.140 Some key accomplishments
include the following:
- Establishing the Access to Telework Fund to allow
individuals with disabilities to work from home or other sites
and have increased access to computers and other equipment, including
adaptive equipment. The Department of Education's Rehabilitation
Services Administration has funded 20 projects under this program.
- Promoting best practices through a partnership between
the EEOC and several states (including Maryland, Vermont, Washington,
Florida, Utah, and Kansas, as well as more states are scheduled
for participation in this program) to promote hiring of people
with disabilities in state government jobs.141 Under this partnership,
the EEOC reviews hiring, retention, advancement, and reasonable
accommodation practices; provides consultation, outreach, and
technical assistance; and will issue a report highlighting best
practices that can serve as a model for other states.142
- Increasing the SSA's budget to fund several demonstration
projects aimed at removing disincentives and providing appropriate
employment supports for individuals who want to work.
In addition, the NFI is promoting the implementation
of the TTW program, full enforcement of ADA, and understanding
and using tax incentives; enhancing the Workforce Investment System;
and promoting the Federal Government as a model employer. For
more information, see the NFI Progress Report at http://www.whitehouse.gov/infocus/newfreedom/newfreedom-report-2004.pdf
The TTW and Self-Sufficiency Program
The TTW and Self-Sufficiency Program, part of the
TTW and Work Incentives Improvement Act of 1999, is a voluntary,
nationwide program whose goal is to increase opportunities for
SSA disability beneficiaries aged 18 to 65 to obtain employment,
vocational rehabilitation, and support services, and ultimately
to replace their SSA benefits with earnings from work.143 This
legislation also addresses SSA beneficiaries' concerns about losing
their health insurance during employment by extending Medicaid
and Medicare coverage, gives exemptions from continuing disability
reviews, and provides free education and employment services to
beneficiaries.
More than 10 million people are eligible to participate
in this nationwide program. As of mid-August, 2004, more than
9.5 million tickets were issued and 59,523 people were using their
TTW vouchers at 1,149 participating ENs or 79 state vocational
rehabilitation agencies.144 ENs are private organizations or government
agencies that have agreed to work with the SSA to provide employment
services to beneficiaries with disabilities.145 These ENs include
One-Stop Centers and Workforce Investment Boards, disability and
rehabilitation service providers, employment agencies, state and
local government agencies, hospitals, foundations, and others.
The services offered vary and may include listings of education
programs, job search assistance, job training, job placement,
and a variety of other offerings, depending on the capacity of
the EN provider. Beneficiaries may contact one or more ENs to
locate suitable programs.146 After the beneficiary and the EN
agree to work together, they develop a customized employment plan
based on the beneficiary's goals and desired earnings. ENs receive
revenue from the SSA for their services (see Figure 5).
Figure 5. Sample ticket
used in the TTW and Self-Sufficiency Program.
Job Accommodation Network
The Job Accommodation Network (JAN) is a free consulting
service of the Office of Disability Employment Policy (ODEP) of
the U.S. Department of Labor. JAN's mission is to facilitate employment
and retention of workers with disabilities by providing information
on job accommodations and technical assistance to businesses and
people with disabilities who are self-employed. Person-to-person
technical assistance services include toll-free consultation regarding
individual worksite accommodation, individual self-employment
accommodation, and individual consultation and referral regarding
ADA and other disability legislation. JAN's annual symposium and
outreach activities provide additional training to private and
public organizations. Electronic technical services include JAN's
accessible Web site (http://www.jan.wvu.edu/), which includes
more than 300 disability-specific accommodation publications;
JAN's Small-Business and Self-Employment Web site (http://www.jan.wvu.edu/sbses/),
which contains information about self-employment and small-business
ownership opportunities for people with disabilities; and JAN's
Searchable Online Accommodation Resource (http://www.janwvu.edu/soar),
which provides personalized accommodation information. Additional
resources include JAN's quarterly newsletter and topical news
flash, Consultants' Corner.
Computer/Electronic Accommodations Program
The Computer/Electronic Accommodations Program (CAP)
was established in 1990 by the Department of Defense (DoD). In
October 2000 CAP became the Federal Government's centrally funded
accommodations program through the National Defense Authorization
Act. CAP's mission is to provide AT and accommodations at no cost
to requesting government agencies to ensure that people with disabilities
have equal access to the information environment and opportunities
in DoD and throughout the Federal Government.
- The Employment Program147 assists human resource
managers and hiring officials with hiring, recruitment, promotion,
and retention of people with disabilities.
- Program Accessibility148 involves technical assistance,
training, and accommodations to meet communication accessibility
requirements.
- System Accessibility149 refers to increasing access
to AT, and the accessibility of electronic and information technology.
Following are examples of several community-based
efforts--some large, others considerably smaller but no less notable--to
increase employment opportunities for people with disabilities.
Within these efforts, people with disabilities may find training
and internship/volunteer opportunities as well.
In Chicago, Illinois, the mayor is committed to increasing
the employment rate for people with disabilities and has implemented
a number of measures to help reach that goal.
From Mayor Richard J. Daley's time to the current
Mayor Richard M. Daley, disability issues have been on the forefront
in Chicago.150 This mayor's Employment Fair for People with Disabilities
is an annual event that began in 2001; the Mayor's Office for
People with Disabilities (MOPD) has hosted Chicago's version of
National Disability Mentoring Day (NDMD) since 2001; and, in October
2002, Mayor Richard M. Daley created a Mayoral Task Force on Employment
of People with Disabilities through an Executive Order. In a time
of fiscal crisis, nearly a quarter of a million dollars annually
has been allocated to the task force. To manage task-force activities,
Gil Selders was named Deputy Commissioner to the MOPD.
The task force is cochaired by David Hanson, commissioner
of the MOPD; Jackie Edens, commissioner of the Mayor's Office
of Workforce Development; and William Osborn, chairman and CEO
of the Northern Trust Corporation. The task force has more than
100 members and consists of 5 workgroups, each with a leader and
an associate leader. Each workgroup has several members from the
business, government, economic development, civic, academic, and
disability communities. The workgroups are required to submit
reports with findings and recommendations to Mayor Daley each
year, in May 2003, May 2004, and July 2005. The task force is
slated to end on July 26, 2005, the 15th anniversary of signing
ADA into law.
The task force's vision focuses on increasing the
employment rate among people with disabilities so that it comes
as close as possible to the employment rate of the general adult
population. A description of the workgroups and their accomplishments
follows.
- Supply Side Development and Coordination
Workgroup. This workgroup created
a new entity called the Provider Leadership Network (PLN). The
PLN is composed of disability service providers, such as the
Rehabilitation Institute of Chicago, the Chicago Lighthouse
for People Who are Blind or Visually Impaired, and the Illinois
Office of Rehabilitation Services, who supply a talented and
qualified pool of job applicants with disabilities to meet the
needs of Chicago's businesses. Overall, from January through
June 2004, the PLN assisted nearly 350 Chicago residents with
disabilities in obtaining employment through three mechanisms:
- Partners for Inclusive Environment was created
in 2001 and coordinates event-driven, targeted job match
fairs for people with disabilities, prescreens job applicants
and employers, and educates employers about ADA provisions.
- AbilityLinks.org, launched in July 2001,
is a Web site that connects people with disabilities to
employers. Employers complete an online form that describes
the available jobs and the prerequisite skills, education,
and training; job applicants fill out an online questionnaire
detailing their skills and capabilities; and Web site staff
use the information to match job candidates with employers.
The Web site has a search function that enables jobseekers
to look for jobs and employers to look for job candidates.
- Employ Alliance is funded by a grant from
the Illinois Council on Developmental Disabilities. Employ
Alliance locates qualified employees with disabilities through
the 280 partners in the PLN and matches them with interested
employers. Through this program, 48 people with disabilities
have been placed from the time of the Alliance's first monthly
meeting in December 2003 to July 2004.
- Procurement and Entrepreneurial Opportunities
Workgroup. This workgroup's mission
is to increase the number of businesses owned or operated by
people with disabilities that are certified to participate in
the procurement programs offered by city agencies and the private
sector. To achieve this goal, the workgroup implemented the
Business Enterprises Owned by People with Disabilities certification
program. Nine companies have been certified and 100 applications
have been requested since they became available in November
2003. The listing of certified businesses will be circulated
among city agencies such as park, education, and transportation
departments as well as with representatives from the private
sector.
- Partnership for Economic Opportunities Workgroup.
In collaboration with the Chicago Chamber
of Commerce, this workgroup developed the Chicago Businessland
Leadership Network (CBLN), which shares effective business practices
to increase employment opportunities for people with disabilities.
The CBLN began with 8 member companies in the fall of 2003 and
expanded to more than 50 companies from the private, public,
and nonprofit sectors by July 2004. The CBLN developed a toolkit
for businesses containing a wealth of information about understanding
ADA, resources, reasonable accommodations, and hiring people
with disabilities (available at http://www.cbln.com). The workgroup
is working with state, county, and city officials to identify
economic incentives for hiring people with disabilities, and
will compile the information in a directory.
- Opportunities for Youth Workgroup.
This group's mission is to make recommendations
to improve employment outcomes for students with disabilities
by addressing education, transition to employment, vocational
rehabilitation, and adult service options to youth and young
adults. The group will establish standards, goals, expectations,
and staff development activities for transitioning youth with
disabilities from school to work. The workgroup was successful
in having two young adults with disabilities appointed to the
Youth Council of the Chicago Workforce Board. A major achievement
for the workgroup was the workgroup leader's (Teresa Garate)
promotion to the position of Director of Program Development,
Innovation and Transition in the Chicago Public Schools (CPS).
Garate will coordinate with all major office of the CPS and
support increased access to general education initiatives, employment
opportunities within CPS, and school-community programs.
- Chicago as a Model City Workgroup.
This group worked with the City Law and Personnel Departments
to revise the 1995 Reasonable Accommodation in Employment and
Hiring Practices Policy. In addition, a centralized Reasonable
Accommodation Account was established to help city departments
defray the costs of making reasonable accommodations and to
provide them with technical assistance. A Reasonable Accommodation
Review Board will have the authority to evaluate and reverse
initial decisions denying reasonable accommodation requests.
And a system to track the nature and costs of reasonable accommodations,
approvals, and denials is under development. Additionally, Mayor
Daley authorized mandatory one-day training on reasonable accommodations
for all 37,000 city employees. The training, entitled "The Intersection
of Diversity and Disability," is expected to begin during the
fall of 2004.
Chicago's commitment to increasing employment opportunities
for people with disabilities is also reflected in two annual events:
(1) Mayor Daley's Employment Fair for People with Disabilities,
and (2) Chicago's participation in NDMD.
The most recent fair was held in July 2004 at Chicago's
Navy Pier,151 and drew approximately 2,000 jobseekers and 50 employers.
Three hundred high school students attended to increase their
awareness and begin their career development. Before the fair,
participating company names were listed on the city's Web site
so that jobseekers could "do their homework" and learn about the
employers in advance. Some examples of the large companies in
attendance were Sears, Roebuck and Company, U.S. Cellular, Walgreens,
McDonald's Corporation, Northern Trust Bank, and the City Department
of Personnel. Disability service providers such as the MOPD, Access
Living, the PLN, and the Chicago Lighthouse were looking to hire
people with disabilities. A variety of workshops were offered
at the fair, such as training in Internet job searches, effective
resume writing, and benefits planning.
Chicago's participation in NDMD152 in 2003 matched
135 16- to 24-year-old students with disabilities with more than
100 mentors from 60 employers in the business, government, and
nonprofit sectors, many of whom were involved in the employment
fair.153 According to Commissioner Hanson, such events "assist
in transitional career planning for students with disabilities
and can significantly increase their likelihood of being employed." 154
In addition to the accomplishments described above,
many more activities are under way. The task force is preparing
to launch a public education campaign to inform employers about
the value of employing people with disabilities and educate employers
and people with disabilities about resources to facilitate employment.
In early fall 2004, the task force launched a user-friendly Web
site, www.disabilityworks.org, that will post task force news
and a calendar of events. And efforts are under way to train the
staff at the city's 311 information line to respond to inquiries
about the task force and disability issues.
For more information, contact Gil Selders Email:
gselders@cityofchicago.org
For more information about Chicago's NDMD, see the
City of Chicago Web site at http://www.cityofchicago.org.
Two of Maryland's employment programs for people
with disabilities are employer driven and rely on partnerships
to increase employment opportunities.
The U.S. Business Leadership Network (USBLN), founded
in 1994, is a national, employer-led effort by the U.S. Department
of Labor's ODEP and supported by the U.S. Chamber of Commerce.155
A local chapter, the Eastern Shore Business Leadership Network
(ESBLN), won the 2003 USBLN Chapter of the Year Award for best
practices in promoting employment of people with disabilities.
In its citation, the USBLN said of the Maryland chapter:
The Eastern Shore Business Leadership Network (ESBLN)
of the Salisbury Area Chamber of Commerce located in the Eastern Shore
of Maryland is a proven leader in promoting the employment of persons with disabilities.
As the first local chamber of commerce to directly sponsor a Business Leadership
Network (BLN), the Salisbury Area Chamber [of Commerce] supports and demonstrates
the BLN mission: that increasing employment opportunities for people with disabilities
is good for business and good for people with disabilities. However, the ESBLN goes
above and beyond simply helping its business members meet their labor needs. The organization
has recognized the intrinsic value of people with disabilities as employees,
consumers, and contributors to the social fabric of our society.156
Sponsorship by a chamber of commerce is important
because it legitimizes the network and changes its status from
a nonprofit, state-agency-type entity to a business strategy.
Today, the ESBLN has expanded to the entire Delmarva
Peninsula--including Delaware, nine Maryland counties, and two
Virginia counties--and recruited three additional county chambers
of commerce (Talbot County Chamber, Cecil County Chamber, and
Greater Seaford Chamber). With this expansion, the ESBLN can be
promoted throughout its network of 4,000 businesses, individuals,
and organizations, significantly increasing the pool of potential
employers of people with disabilities.
Specifically, ESBLN's goals are to achieve the following:
- Provide employers with access to prescreened
job candidates.
- Decrease the number of people with disabilities
who are unemployed or underemployed.
- Provide employers with information about best
practices, disabilities, support services, and tax incentives
to facilitate employment, training, and retention of people
with disabilities.
- Increase general awareness of people with disabilities
as valuable employees, entrepreneurs, and consumers in communities.
Two strategies that ESBLN employs for meeting its
goals are (1) a comprehensive Web site that provides resources
to employers and job candidates and (2) partnerships with agencies
in the public rehabilitation system, which play a key role in
recruiting, hiring, training, and retaining workers with disabilities.
The ESBLN Web site (www.esbln.org) is the first
site in the nation designed to link job-ready candidates with
disabilities to employers across the Delmarva Peninsula. The Web
site allows employers to search for prescreened job candidates
and allows candidates and agencies to search for job openings
with employers in specific geographic regions across the Delmarva
Peninsula. The Web site, which is sponsored by various corporate
members,157 has been used as a model for BLNs in other locations
around the country.
The ESBLN actively works with the Maryland CareerNet
One-Stop,158 which encompasses the Maryland Division of Rehabilitative
Services (DORS). According to the USBLN Chapter of the Year Award
bestowed on ESBLN, the effectiveness of the partnership between
ESBLN and the colocated career center and department of rehabilitation
services is demonstrated by an increase in "competitive employment
outcomes" (i.e., the number of people with disabilities hired).
For example, in 1998, DORS reported 182 successful competitive
employment outcomes. In 2002, after working in partnership with
the ESBLN and the one-stop career center for a couple of years,
the number of successful outcomes had risen to 247, and, after
a one-year follow-up, the retention rate of those employees was
85 percent.159
The governor's QUEST160 Internship Program for Persons
with Disabilities is a successful program that helps people with
disabilities gain work experience and become employable in Maryland.161
The program is administered by the Disability Employment Workgroup,
which is a partnership between the Office of Personnel Services
and Benefits (OPSB, part of the Department of Budget and Management)
and the Department of Disabilities. The Workgroup also includes
representatives from other state agencies and the DORS.
The QUEST program started in 2000 with a budget
of $50,000 from the OPSB, which supported six-month contractual
positions for approximately 10 interns. But the following year,
Maryland's hiring freeze resulted in changing the program's structure
to a volunteer program with a stipend.
Actually, this change was fortuitous. The program
is now more flexible and open to a larger pool of candidates,
because the requirements for volunteers are designed to be competency-based
rather than to emphasize a required amount of relevant work experience
to qualify for a position. Internship assignments are varied and
have included jobs such as junior accountant, Medicaid program
assistant, activity therapist assistant, communication and marketing
trainee, and health records clerk. In 2004, 25 positions were
filled. Interns receive a $3,000 stipend for three months of full-time
work and $1,500 for part-time work, paid through the OPSB.
Typically, Maryland's OPSB promotes QUEST to state
agencies with promotional materials, phone calls, and emails,
and solicits agencies to participate in the program in the fall
and winter. A booklet detailing available internships is sent
out in January or February to DORS counselors in Maryland, who
then find and refer job-ready candidates. Applications are distributed
to candidates in March, and a kickoff event for agencies and internship
supervisors is held in April. Applications are provided to state
agencies during the QUEST Kickoff orientation event, which provides
agency supervisors with information related to intern selection
procedures, reasonable accommodation, available DORS resources,
and related administrative activities. Then supervisors conduct
interviews and make their selections. A memo of understanding
is signed by the internship supervisor from the participating
state agency, the intern, the DORS employment representative,
and the Recruitment and Examination Division director in OPSB.
Interns usually begin working by May. A graduation ceremony with
interns and their supervisors was held on October 4, 2004, to
celebrate the interns' accomplishments. In 2004, QUEST graduates
will also be awarded a governor's citation for completing their
recent internships.
The QUEST Internship Program benefits interns and
agencies alike. Interns with disabilities gain valuable work experience,
which helps them become more employable when and if they search
for permanent employment, and agencies gain experience in hiring
and working with people with disabilities. Steve Serra describes
the program as a significant and moving experience for both interns
and their supervisors.162
For more information about the ESBLN, see the ESBLN
Web site at http://www.esbln.org
or http://www.usbln.org.
For more information about the QUEST internship
program, contact
Steven Serra
Email: sserra@dbm.state.md.us
In Flint, Michigan, Career Alliance, Inc., a One-Stop
Career Center163 serving Genesee and Shiawassee Counties, is pilot-testing
"Customized Works!," a promising new program that may be instrumental
in changing the way that One-Stop Centers, rehabilitation organizations,
and other providers do business in terms of training and finding
employment for people with disabilities.
Michigan Works Career Alliance, Inc., is one of
25 agencies in Michigan that provides employment services to all
working-age individuals in the state who need them. While states
have a great deal of autonomy in how their One-Stop Career Centers
are organized and what services they provide, they are mandated
to accommodate all jobseekers, including people with disabilities.
Few, if any, however, have gone as far beyond minimum federal
guidelines for accessibility and inclusion as Career Alliance,
Inc. For example, Career Alliance employs people with disabilities--in
fact, about 30 percent of its workforce are people with disabilities.
In addition, Career Alliance is pilot-testing a program that approaches
expanding employment opportunities for people with disabilities
in a new way.
Career Alliance is one of five grantees to receive
funds from the U.S. Department of Labor's ODEP to create a "customized
employment" program. According to the ODEP, customized employment--
..is a process for individualizing the employment
relationship between a jobseeker or employee and an employer in ways that meet the needs
of both. It is based on a match between the unique strengths, needs, and interests
of the job candidate with a disability, and the identified business needs of the employer
or the self-employment business chosen by the candidate. This is a business deal.164
Customized employment starts with the development
of an employment plan based on the strengths, needs, and interests
of the job candidate with a disability. This is accomplished through
an individualized assessment that involves listening to the person
with a disability describe his or her experiences, interests,
and abilities. Once the candidate's goals are established, potential
employers are identified by looking for a match between the job
candidate's expressed interests and skills and the nature of an
employer's business. A preliminary job proposal is developed and
presented to a potential employer, who has voluntarily agreed
to negotiate an individualized position that meets the employment
needs of the applicant and real business needs of the employer.
A personal agent or "job developer" conducts the assessment, develops
a plan for the job candidate, assists the candidate throughout
the process, and provides follow-up services when appropriate.
The idea here is not to try to fit the jobseeker into a preexisting
employment slot, but rather to carve out a job from a traditional
job description or negotiate a new position description that matches
the applicant's aspirations with the unmet needs of the employer.165
For example, an individual's assessment showed that
he has skills to do filing. He also expressed a strong desire
to be a police officer. To meet both the individual's skills and
desires and the employer's needs, a carved job was negotiated
with a county sheriff's department that incorporates tasks of
organizing and filing misdemeanor arrest reports and traffic citations.
The Career Alliance (CA) program in Flint, Michigan--an
area with one of the highest unemployment rates in the country--is
called "Customized Works!" and has been in operation for just
one year. During this first year, staff for the grant were selected
and trained, a strategic plan was developed and committees formed,
and 10 initial eligible166 "customers" (i.e., jobseekers) and
more than 40 community partners and provider agencies were selected
to participate in the program. CA staff estimate that it may take
from 18 to 24 months to match a jobseeker with an employer. CA's
goal is to work with 60 customers over the five-year period of
the grant.
Although the program started recently and does not
have many results to share as yet, it is a program worth watching
over the next four years. If it is successful, Customized Works!
as well as the other grantee customized employment programs may
become a model for One-Stop Centers everywhere to use with all
of their customers. If the system works for the most difficult-to-serve
population--people with disabilities--then it should work for
others as well.
For more information about customized employment,
see the Department of Labor's Web site at www.dol.gov/odep/tech/employ.html.
For more information about Customized Works! see www.careeralliance.org/cworks/.
Uptown Bill's Small Mall in Iowa City, Iowa, houses
a group of small businesses owned and operated by people with
disabilities.
In 2001, with support from the Extend the Dream
Foundation, Thomas Walz,167 former Dean of the School of Social
Work at the University of Iowa, founded Uptown Bill's Small Mall--a
group of small businesses in downtown Iowa City that are owned
and operated by low-income people with disabilities who had never
worked before. The businesses include--
- Uptown Bill's Coffeeshop
- Bill's Bookmart
- Leslie's Luxuries (antiques and collectibles)
- Mr. Ed's SuperGraphics
- Mad Hatter Room (a venue for local music that
is alcohol and smoke free, and is also used as a center for
Alcoholics Anonymous meetings)
- Gretchen's Vintage Apparel
Two related offsite businesses are--
- Mick's Workshop (furniture refinishing and improvement)
- Funk's Grove Lawn and Garden
The business owners include people with chronic
mental illness, cerebral palsy, brain injury, post-traumatic stress
disorder, diabetes, and dual diagnosis of mental illness and alcoholism;
some use wheelchairs. In addition to the eight owners, Uptown
Bill's Small Mall has dozens of volunteers who maintain property.
Many of the volunteers are people with disabilities; others are
social work students from the University of Iowa.
In 2002, Walz received the Best Accessible Design
Award for the mall from the Governor's Commission of Persons with
Disabilities. The mall, open 365 days a year, is located downtown
and can be easily accessed by people living nearby. With its homey
quality, the mall has become a neighborhood center that hosts
community events and holiday meals.
Using Community Development Block Grants, Iowa City
provided a 100 percent rent subsidy to the mall for its first
three years and will provide a 50 percent subsidy for another
three years. The mall is associated with the University of Iowa
School of Social Work, School of Business, School of Nursing,
Disabilities Studies Program, and the Department of Psychology.
The idea for Uptown Bill's Small Mall was inspired
by Bill Sackter, a man with mental retardation who had been committed
involuntarily to a state hospital and was discharged during the
1960s deinstitutionalization movement. Tom Walz gave Bill his
first job--making coffee at the School of Social Work. In time,
an empty classroom was transformed into a coffeeshop and Bill's
work evolved into "Wild Bill's Coffeeshop." Bill operated the
shop from 1974 until 1983, when he died at the age of 70. His
life has been immortalized through a number of popular films and
books.168
After Bill's death, Wild Bill's Coffeeshop remained
part of the University of Iowa School of Social Work. Now, Uptown
Bill's Small Mall has a contract with the University of Iowa to
continue to run Wild Bill's Coffeeshop, with all of the income
over employee salaries going to the university. The coffeeshop
is operated by people with severe disabilities, each of whom works
about four hours a week. In 2002, Tom Gilsenan, the coffeeshop
manager and a doctoral student in social work at the University
of Iowa, received the Small Employer of the Year Award from the
Iowa Commission of Persons with Disabilities in recognition of
the number of people with disabilities hired since 1973.
The businesses in Uptown Bill's Small Mall are supported
by a combination of grants, public funding, volunteers, and their
own profits. They provide paid and volunteer opportunities for
people with and without disabilities. They also provide an important
service to the surrounding community as well as an educational
opportunity for university students to work with people with disabilities.
The ultimate goal is for the businesses to be self-sufficient
and mainstreamed into the larger business community.
For more information, see Uptown Bill's Web site
at http://www.uptownbills.org.
Chapter 6: Ensure Access to Key Health and Support
Services
In 2001, three people in
Los Angeles who use wheelchairs consented to mount camcorders
on their chairs and film themselves as they went through and commented
on their daily activities and thoughts over an 18-month period.
From this footage, physician-filmaker Gretchen Berland169
created Rolling, a 70-minute documentary that chronicles the ups
and downs of their lives. One of the three subjects, Vicki Elman,
is a middle-aged woman who has had multiple sclerosis for 20 years,
lives alone, and has been using a motorized wheelchair for the
past six years to get around. Part of the film follows Elman through
a particularly challenging--and, unfortunately, not unusual--episode
in which her chair malfunctions and she struggles to get it fixed.
We first see Elman in a series of increasingly frustrating
phone calls with her insurance company in which she explains that
the chair has not been working properly for four months and tries
to secure authorization to get it fixed. Then the wheelchair seriously
malfunctions over Memorial Day weekend. Elman tries to contact
the repair company, but she can't reach anyone because of the
holiday. The controls that allow her to lift her legs off the
floor are broken, so her feet and ankles drag on the ground, and
she has multiple cuts and bruises on her legs as a result. On
the Tuesday after the holiday, Elman goes to her doctor's office
to take care of her injured legs and see what her doctor can do
to expedite repair of the wheelchair. Without her wheelchair,
explains Elman, she cannot get in and out of bed or use the bathroom
at home.
The doctor examines Elman's legs and looks worried.
He tells her that his office cannot fix the wheelchair. The best
he can do, he says, is to "call the repair company and harass
them" so that they attend to Elman's wheelchair problems right
away. But, he adds, even this will take a while to accomplish
and he is concerned that, in the meantime, Elman's legs will get
worse. Ideally, Elman explains, she would find a replacement chair
to use while hers is being repaired, but the company does not
rent the kind of chair she needs. The doctor tells Elman that
he thinks she would be safer if she had full-time care, so he
has arranged for her to stay in a "convalescent home" during the
time the chair is under repair.
We next see Elman struggling to enter the convalescent
home--the front door is not wheelchair accessible. At first there
doesn't seem to be anyone at the front desk to respond to her
calls for help, but soon an attendant spots her and helps her
in. Despite her disability, Elman is quite independent at home.
In the convalescent home, however, she is almost totally dependent,
and it's clear that she is not used to being in that position.
At one point, she asks an attendant to help her get out of bed
to go to the bathroom, but the attendant refuses and tells her
to use the bedpan instead. This is the last scene Elman is allowed
to film in the convalescent home. She stays there for a full four
weeks before her repaired chair is returned to her.
Viewers of the film learn that despite the challenges
Elman faces on a daily basis, she is an active disability advocate.
After weeks of planning, she travels to San Diego for a meeting
of Californians for Disability Rights. Elman has been elected
president of her local chapter and is working on legislation that
she hopes will make it easier for people with disabilities--including
the 1.6 million people in the United States who use wheelchairs--to
live at home "rather than end up in a convalescent home" as she
did. The pending legislation is called the Vicki Elman Community
Living Act.
For many people with disabilities, durable medical
equipment (DME) or AT is essential to maintain their health, functional
ability, and independence. However, most health plans, especially
public programs that people with disabilities rely on for health
insurance and other types of assistance, have complex policies
and guidelines for the kinds of equipment or technology they cover.170
People with disabilities are affected by restrictive definitions
of "medical necessity" and the decision making processes of managed
care organizations.171 A study of medical decisions made by managed
care organizations in California, for example, found that requests
for DME are among the most likely to be denied on the basis of
medical necessity.172 Along with these restrictive health plan
decisions, financial barriers are the most common reason why people
with disabilities may not have the assistive equipment they need.173
Findings from a 2003 national survey reveal that, among those
who use such equipment, one of five said that they have serious
difficulties paying for it.174
Obtaining, replacing, or repairing DME and AT is
often a complicated task, even for people skilled in navigating
health plan coverage issues.175 Old wheelchairs can be expected
to break down with increasing frequency; they have a life expectancy
of five to seven years before they must be replaced. As Vicki
Elman's story illustrates, once a chair does break down, it may
take a month or more to repair it or obtain a new, custom-fitted
one. Users often are unable to convince health plans that a new
one might be needed before the current one becomes inoperable.
In the meantime, the use of a poorly functioning or inadequate
wheelchair can lead to a decline in physical health and more frequent
use of costly health care services.176
Access to appropriate, functioning DME and AT is
far from the only barrier that people with disabilities face when
it comes to interacting with our fragmented health care system.
Results of a national survey by the Henry J. Kaiser Family Foundation177
reveal that despite their well above average use of health care
services, individuals with disabilities face greater barriers
to access than does the rest of the population. Providers of health
services are often ill-equipped to meet the needs of people with
disabilities. While the majority of survey respondents say they
have a regular doctor, one of four report having had trouble finding
a doctor who understands their disability. Although the vast majority
of people with disabilities are covered by some type of health
insurance, more than one of six (17%) report difficulties finding
a doctor who accepts their insurance, and the rates are even higher
(nearly 25%) among those covered by Medicaid, with or without
Medicare as a supplement. Paying for prescription drugs and dental
care was cited in the survey as a serious problem by nearly one-third
of the respondents.
Studies find that, despite their frequent encounters
with the health care system, people with disabilities are less
likely than the general population to receive the range of preventive
services they need, or they receive these services less frequently
than recommended.178 Preventive care is often overlooked, yet
people with disabilities are susceptible to chronic conditions
to the same or greater degree than the general population and
are at risk for secondary conditions that result from their primary
impairment--for example, women with mobility impairments experience
an elevated risk for secondary osteoporosis at earlier ages.179
To better assess the magnitude of these and other health disparities
between people with disabilities and people without disabilities,
Healthy People 2010180 is including health goals for people with
disabilities as a subgroup similar to other populations requiring
special attention.181
People with disabilities, like all people, prefer
to live at home and receive whatever health care and support services
they need in the community. The complexity of issues related to
the various health service needs of this group creates enormous
challenges for states and local communities, consumers, advocacy
groups, and policymakers. Serving people with disabilities in
a community setting often requires changes in the financing and
structure of health care delivery systems, such as more funding
for community health centers, improved transportation services
for people with mobility limitations, housing programs that are
integrated with long-term support services, and the inclusion
of people with disabilities and their advocates in service planning
and delivery.182
Across the country, states have achieved varying
degrees of progress in helping individuals with disabilities live
independently in their communities by providing access to affordable,
quality health care and long-term support services. Several states,
for example, are exploring how to provide more cost-effective
care for people with disabilities. Increasing demand for Medicaid
and/or Medicare services has led them to pursue the option of
enrollment in managed care. These states believe that some form
of high-quality managed care is the best way to broaden access,
contain costs, and increase quality of care for this population.
A key component of many of these programs is "care coordination,"
which goes beyond the medical model of disease management. Successful
programs ensure that the diverse medical and psychosocial needs
of beneficiaries with disabilities are identified and met, focus
on wellness and prevention, and manage both covered as well as
noncovered services.183 Two such models, Minnesota Disability
Health Options (MnDHO) and Wisconsin Partnership Program, are
profiled in this chapter.
To meet the objectives of the Olmstead184 decision,
which mandates the provision of services in the least restrictive
environment possible, several states are exploring the potential
of supportive housing185 as an alternative to costly institutionalization.
The supportive housing model evolved as a product of efforts to
link normal permanent housing options (e.g., apartments, condominiums,
single-family homes) with supports and services needed or desired
by the residents. Supportive or service-enriched housing often
includes group residences specifically designated for older persons,
such as government-subsidized senior apartments, retirement housing,
and assisted living facilities. It also can include Naturally
Occurring Retirement Communities (NORCs).186 This community-based
approach targets three vulnerable groups that need long-term supports
and services to live as independently as possible: frail elders,
people with significant disabilities, and chronically homeless
people. Development of supportive housing for these three subpopulations
share many common principles, approaches, and issues.187 These
similarities reflect common issues and needs among all three groups,
including the following:
- High rates of poverty
- Desire to live in normal housing rather than
in segregated and restrictive settings
- The need for long-term supports and services
to live as independently as possible
- The desire for personal control, autonomy, and
choice
Given these similarities, several models of supportive
housing, regardless of the subpopulation they serve, are profiled
in this chapter.
Other models of supportive housing specifically
targeting people with disabilities emerged from the independent
living movement.188 Nearly 500 Independent Living Centers189 have
been created that provide various combinations of services, such
as attendant care, financial assistance, peer counseling, advocacy,
referral, transportation, and assistance with housing.
As part of the NFI, the Bush Administration proposed
the Medicaid Demonstrations Act of 2003 intended to promote community-based
rather than institutional long-term care services for individuals
with disabilities and to help states implement the Supreme Court's
Olmsteaddecision by providing funding for several demonstration
projects. The President's budget proposes $350 million a year
in funding for five years, for a total of $1.75 billion for a
demonstration called Money Follows the Person (MFP) Rebalancing
Initiative.190 The goal of this initiative is to assist states
in developing and implementing a strategy to create a more equitable
balance between spending on institutional and community-based
services and eliminate barriers that Medicaid-eligible people
face when choosing to receive long-term care services in the community.
Rebalancing the long-term care system means adjusting
the state's publicly funded long-term care supports by increasing
the availability of service options in the community and reducing
reliance on institutions so that the supply of available services
reflects the preferences of older people and people with disabilities.
A balanced long-term care support system increases the amount
of control individuals with disabilities are able to exert over
service choices.
When "money follows the person," financing moves
with the person to the most appropriate and preferred setting.
It is a market-based approach that gives individuals more choice
over the location and type of services they receive.
According to the proposed initiative, the Federal
Government would pay 100 percent of the cost of a Medicaid-equivalent
package of home- and community-based services for Medicaid-eligible
individuals who move from a Medicaid-certified institution to
the community. The initiative would be assured for five years
to give states adequate time to consult with stakeholders, design
their plans, and prepare for implementation.191
Several states already have been working on rebalancing
institutional and community-based care and have undertaken initiatives
to enable money to follow the person.192 They typically use one
or more of the following strategies:
- Legislative actions that set a policy of balancing
the long-term care system and create budgetary mechanisms to
move funding from institutional to home- and community-based
services.
- Market-based approaches that offer participants
more community supports and timely information.
- Fiscal and programmatic links that improve coordination
among different functions in the support system and encourage
more community services and less reliance on institutions.
A 2003 report states that about 1.2 million people
receive disability-related support services at home through state
Medicaid plans or HCBS Waiver programs.193 Under state plans,
services traditionally have been restricted to attendant assistance
with personal care and homemaking and/or other services and products
determined by licensed care agencies. In contrast to these traditional
models, states are increasingly offering Medicaid beneficiaries
and their families the opportunity to obtain support services
from individual providers. This alternative approach is termed
consumer-directed (CD) care.194 The Cash and Counseling program
is an expanded model of CD support services in which Medicaid
consumers with disabilities decide for themselves how their personal
assistance needs are met. It provides a flexible monthly allowance
(based on the consumer's care plan or on claims history) that
consumers can use to purchase a variety of support services. Or
beneficiaries may use the money to make home modifications or
buy assistive devices that may reduce their future need for personal
care. Along with the cash, consumers receive information, advice,
and training on how to access and manage their own care. The program
requires enrollees to develop a spending plan and provides counseling
and fiscal assistance to help consumers manage their allowances.195
The initial Cash and Counseling Demonstration Project
was launched in 1995 in three states: Arkansas, Florida, and New
Jersey.196 The project was sponsored by the Robert Wood Johnson
Foundation (RWJF) and the Office of the Assistant Secretary for
Planning and Evaluation in the
U.S. Department of Health and Human Services (ASPE/DHHS).
A preliminary comparison of the Cash and Counseling CD model with
the traditional agency-directed approach to delivering personal
assistance services showed that the great majority of consumers
in each of the three Cash and Counseling programs were very well
satisfied with the program. An evaluation of the effect of the
program in Arkansas, the first state to implement Cash and Counseling,
showed that Medicaid beneficiaries who had the opportunity to
direct their personal assistance services received better care
than a control group. They reported higher satisfaction, better
quality of life, fewer unmet care needs, better access to home
care services, and less nursing home usage,197 all without compromising
the beneficiaries' health or safety and with no greater cost burden
to Medicaid than traditional agency services.198 Because of the
success of the demonstration model, in early 2004, RWJF announced
a $7 million grant for the expansion of Cash and Counseling under
which as many as 10 states will receive up to $250,000 each over
three years to replicate the CD model.199
Following are examples of successful state and locally
supported efforts at improving health and long-term care services
for people with disabilities and frail elders.
Minnesota and Wisconsin developed health care delivery
systems that have the potential to become national models for
delivering services to frail elders and people with disabilities.
Their early successes suggest that states can successfully
work with prepaid managed care plans to develop tailored programs
that enhance the physical and mental well-being of these populations.
Minnesota Disability Health Options
(MnDHO),200 a voluntary program, is a specialized managed
care program for working-age people with physical disabilities
who are eligible for Medical Assistance (MA),201 with or without
Medicare. MnDHO integrates delivery of all Medicaid and Medicare
services. Beginning in January 2005, prescription drugs will be
included in the contract. The Minnesota Department of Human Services
(DHS) administers the MnDHO program and pays Medicaid capitation
to UCare Minnesota, a nonprofit health plan. UCare Minnesota contracts
with AXIS Healthcare to provide care coordination, provider relations,
and member services. AXIS Healthcare assigns a care coordinator
to each enrollee; the coordinator assists the member with accessing
and coordinating health care and support services. The coordinator
works with the enrollee as a partner to arrange for service provision
from doctors, home care providers, health care agencies, equipment
suppliers, and transportation providers. In some cases, the coordinator
can obtain home modification assistance for enrollees. An AXIS
Care Coordinator is available 24 hours a day/7 days a week to
triage emergent concerns when they arise.
Eligibility: Participation
is voluntary. Individuals must be between the ages of 18 and 65,
have a physical disability, be eligible for MA, and live in one
of the following counties: Hennepin, Ramsey, Anoka, or Dakota.
Services: MnDHO offers
all MA and Medicare services (for Medicare beneficiaries), including
doctor visits, lab and x-rays, emergency care, DME, hospital care,
nursing home care, home- and community-based care such as home
health care, personal care and attendant services, and transportation
to appointments. The health plan also may offer services to waiver
eligible members that normally are not covered by MA or Medicare,
such as modifications to the home or vehicle, extended personal
care attendant services, and others.
Benefits: The program began in
September 2001 and by October 2004 had 350 members. Slightly more
than 50 percent are dual Medicare/Medicaid beneficiaries. Interviews
and focus groups at the end of first year show that 9 of 10 members
report satisfaction with their health care services one year after
enrollment compared with the prior year. At the same time, hospitalization
rates and hospital lengths of stay have been reduced by half or
more, which may lead to future cost savings.
For more information, see the DHS Web site at http://www.dhs.state.mn.us/main/groups/healthcare/documents/pub/DHS_id_006272.hcsp#P55_
3487.
For more information, contact UCare Complete Phone:
(612) 676-3500 Toll Free: (877) 523-1518 TTY: (800) 688-2534 AXIS
Healthcare Phone: (651) 641-0887 Web: http://www.axishealth.com
Wisconsin Partnership Program202
is a comprehensive program of services for older adults and people
with physical disabilities in Wisconsin. The program integrates
health and long-term support services, and includes home- and
community-based services, physician services, and all other health
care services. The Department of Health and Family Services contracts
with CBOs to implement the Partnership Program. These organizations,
in turn, subcontract with hospitals, clinics, home health agencies,
residential providers, nontraditional service providers, pharmacies,
and other providers to ensure a comprehensive network of acute
and long-term care. The Wisconsin Partnership Program combines
the benefits of the Medicaid/Medicare systems into one program
through an 1115/222 dual waiver,203 which helps to avoid fragmentation
and duplication of services. It provides high-quality, flexible,
consumer-centered, comprehensive, and continuous care across settings
and providers. It uses a model of service delivery based on collaborative,
interdisciplinary204 teams that collaborate with enrollees on
the development of care plans and coordinate all service delivery.
Eligibility: Participation
in the Wisconsin Partnership Program is voluntary. Individuals
must be either age 55 or older (model serving older adults), or
age 18 to 65 with a disability (model serving people with physical
disabilities) to enroll in the Partnership Program. They must
be eligible for Medicaid and meet the Wisconsin Medicaid nursing
home level-of-care requirement. Most participants are eligible
for both Medicare and Medicaid.
Services: A key component
of the Partnership Program is team-based care management. Under
this arrangement, the enrollee, who is the central figure on the
team, his or her physician, a registered nurse, a nurse practitioner,
and social service coordinator or social worker develop a care
plan together. Other team members may be drawn in as the member's
needs change. Participants often keep their own physicians who,
in most cases, are added to the Partnership provider network.
In addition to comprehensive health care, the services include,
but are not limited to, the following: daily living assistance
from attendants, physical and occupational therapy, adaptive equipment,
assistance in locating accessible housing, housekeeping, transportation
to medical appointments, laundry service, prescription medications,
and more.
Benefits: The Wisconsin Partnership
Program allows members to live in their preferred settings, participate
in community life, and be engaged in decision making processes
regarding their own care. The program uses the cost-containment
features of a managed care system and integrates Medicare and
Medicaid funding streams and service delivery systems to provide
acute and long-term care services. As of September 2004, 1,712
people were enrolled in the Partnership Program at four Wisconsin
sites.205
For more information, see the Department of Health
and Family Services Web site at http://dhfs.wisconsin.gov/WIpartnership/index.htm.
Supportive Housing Initiatives
To address the needs of its large population of
elders and people with disabilities, Arkansas has developed a
comprehensive array of supportive housing and community-based
alternatives that allow these groups to live meaningful lives
in the community.206 Two such initiatives are described below.
The Coming Home Program:
An initiative sponsored by the RWJF207 and National Cooperative
Bank Development Corporation (NCBDC).208 In January 2001, Arkansas
received one of nine Coming Home Program209 grants to create an
assisted living model to serve low-income seniors (including those
on Medicaid with incomes at or less than 300 percent of SSI or
$564 per month) by reducing shelter payments to about $350–$400
per month and funding necessary support services though Medicaid.
The initiative involved combining a comprehensive service package
under a Medicaid §1915(c) HCBS Waiver210 with other available
funding sources. To make this demonstration project possible,
the Arkansas State Legislature passed the Assisted Living Act
(Act 1230 of 2001) that promotes "the availability of appropriate
services for elderly persons and adults with disabilities in the
least restrictive and most homelike environment" and encourages
"the development of innovative and affordable facilities particularly
for persons with low to moderate income." 211 In December 2002,
one of the nation's first truly affordable assisted living facilities,212
the Gardens at Osage Terrace, opened in Bentonville, Arkansas.213
All of the facility's 45 apartments serve Medicaid-eligible individuals
and those at or below 60 percent of the area median income. In
May 2003, two additional Coming Home assisted living demonstration
projects were awarded federal low-income housing tax credits:
Fruit of the Spirit in College Station, and Whispering Knoll in
Pine Bluff. Both projects will create 40 assisted living units
that serve predominantly low-income, Medicaid-eligible elders
and will form partnerships with local senior care providers to
meet the service needs of the residents.214
The Arc of Arkansas: Unique
housing initiatives that provide quality affordable, accessible
housing for Arkansans with and without disabilities. All of The
Arc's housing projects are renovated historic buildings located
along regular bus lines that feature universal design standards
to attract and accommodate people with and without disabilities.
The Arc uses Historic Preservation Tax Credits, grants from the
Historic Preservation Trust, and other funding sources to renovate
buildings for new housing. Their first project, Trinity Court
Place Apartments, a 22unit independent living facility for low
to moderate-income residents with disabilities and their families
underwent renovation beginning in 1998. By 2004, The Arc had renovated
three properties with 106 rental units. Forty percent of the residents
are people with disabilities. For more information about The Arc
of Arkansas properties, see Chapter 2 of this report.
Supportive Housing in Connecticut:215
In the past, Connecticut has disproportionately relied on institutions
to provide long-term care for both the elderly and younger people
with disabilities. More recently, increasing attention has been
paid to supportive housing programs for these two populations.
Supportive housing programs for the elderly are designed to reduce
reliance on institutional care by delivering services to frail
elders, who, without such assistance, would need to relocate to
a nursing home. Supportive housing for nonelderly people with
disabilities reflects a broader range of strategies that emphasize
autonomy and inclusion in the community. Several of these initiatives
received recognition for their creative financing approaches involving
both capital and subsidy funding to create permanent, service-rich
housing for low-income people with disabilities. Highlights of
two programs for the elderly, followed by two programs for younger
people with disabilities, are presented below.
- Assisted Living Services (ALS) in State-Subsidized
Congregate Housing: 216 All state-subsidized elderly congregate
housing (CH) facilities are eligible to participate in the ALS
program, which is designed to offer services to frail elderly
residents who meet the functional eligibility requirements for
the state home care program. The addition of the ALS program
in participating CH facilities offers frail CH residents access
to instrumental and personal care services, which are provided
by the staff from an Assisted Living Services Agency (ALSA).
Eligible residents participating in the ALS program receive
a package of services based on individualized care plans. The
ALS program provides services that are not part of the existing
service package in CH. These services include personal care
assistance, medication supervision, shopping, homemaking, laundry,
and other services. Funds for the ALS program come from either
the Connecticut Home Care Program for Elders (CHCPE) or a Department
of Economic and Community Development (DECD) subsidy that provides
up to $500 for residents who are income eligible for the CHCPE
but exceed the asset limits. As of June 30, 2003, a total of
269 residents received ALS.
- ALS in Federally Subsidized Senior Housing:217
Four federally subsidized senior housing complexes were authorized
under legislation passed in 2000 and 2001 to provide ALS under
the state's Medicaid waiver program. Three complexes are currently
operational. Of these, two provide the additional subsidy for
elders who are not eligible for the CHCPE. As of June 30, 2003,
a total of 150 residents received ALS under this program.
- New Pilots Supportive Housing Initiative:218
Authorized in 1998, this initiative is designed to develop a
range of supportive housing options across the state with two
strategies: (1) to add services to existing private apartments,
and (2) to develop new units. This demonstration involves the
cooperation of more than 50 public and private agencies and,
ultimately, a goal to provide 650 units of service-supported
housing serving a mix of formerly homeless people and families
and individuals with disabilities. In addition to the Connecticut
Housing Finance Authority (CHFA), which reviews and oversees
the projects, other state agencies in the project include the
Department of Mental Health and Addiction Services (DMHAS),
Department of Social Services (DSS), and DECD. Private foundations,
local developers, and service providers have cooperated to develop
an array of housing and services. Housing units may come from
new construction, rehabilitation, acquisition, or leasing of
scattered sites. Case management is considered the key to providing
individualized services. Services include independent living
skills training, employment training, peer supports, and links
with other community services. In 2000, during Phase I of the
Pilots Program, Connecticut allocated $2.1 million for services
provided through the DMHAS. With these funds, DMHAS funded 50
service providers. For several projects, the funding for services
provided by the state served as a match to secure rental subsidies
through the HUD Continuum of Care Program. During Phase 1, 200
supportive housing units were created in existing housing. In
2001, 100 additional units were added by converting private
apartments to supportive housing. During this time, Connecticut
allocated an additional $3 million for service subsidies and
set aside a $23 million financing package (e.g., Low-Income
Housing Tax Credits) to fund the construction of 300 to 350
new units of additional supportive housing. In 2003, $6 million
was added to the DMHAS and CHFA budgets to cover the expenses
of expanding the program. The overall goal of the project, when
complete, is to provide affordable, integrated supportive housing
for up to 570 people with disabilities who will live together
with others in the community.
- CMS System Change Grants: Nursing Facilities
Transition and Community Integration:219 Connecticut is the
recipient of two CMS System Change grants designed to enable
people with disabilities to live in the least restrictive environment
possible. These System Change initiatives are designed to facilitate
the integration of people with disabilities into the community.
In 2001, Connecticut received a three-year $800,000 grant to
facilitate the transition of 150 nursing home residents into
the community. The Connecticut Association of Centers for Independent
Living is responsible for carrying out the project's major activities.
To date, a total of 40 transitions have been successfully completed.
The New York City Naturally Occurring
Retirement Communities/Supportive Service Programs (NORC-SSPs):220
In this model, partnerships among housing providers, residents,
social service providers, government agencies, and philanthropic
organizations are formed to assess the needs, interests, and resources
of a community and its residents. After the assessment, the partnerships
organize a range of coordinated health care and social services
for the residents that are delivered on site. Most NORC-SSPs are
located in high-rise apartment buildings. As of June 2000, 28
NORC-SSPs were serving communities and housing developments in
four of New York City's five boroughs, where more than 46,000
seniors live. Eligibility to receive services and participate
in programs is based on age and residence in the NORC, not on
functional or economic status. Services are flexible and responsive
to needs and interests identified by the residents. The New York
NORC-SSP model consists of four core services: (1) a range of
individual social work services;221 (2) health-related services
and programs;222 (3) education and recreation activities; and
(4) volunteer opportunities for the seniors in the community.
New York City's NORC-SSPs are financed through public-private
partnerships and in-kind supports. The almost $5 million of state
and city government funding constitutes more than half (56%) of
total funds available and is the base on which additional funding
is leveraged. Private sector funding comes from a variety of sources
that include the housing corporation (10%); health care providers'
in-kind contributions (13%), philanthropy (17%), and various membership
fees and local fundraising efforts (4%). This NORC-SSP model is
gaining increasing attention within New York and throughout the
nation.
Chapter 7: Encourage Participation in Civic, Cultural,
Social, and Recreational Activities
Rick Canen worked for the
Steelcase Corporation in Grand Rapids, Michigan, for 30 years--first
in the factory and later, when his sight failed, in the company's
cafeteria. Rick is retired now, but he seems busier than ever.
He is a member of several advocacy groups in Grand Rapids, including
Concerned Citizens for Public Transportation and Faith in Motion,223
and is involved with several different organizations for the blind,
including Pilot Dogs, a nonprofit organization founded in 1950
to train guide dogs and teach blind people to work with them.
Diabetic since he was nine years old, Rick eventually lost his
sight and needed a guide dog himself. Three years ago, Freedom,
a Labrador retriever, came to live with the Canens. Rick is very
fond of Freedom and calls her an "ice-breaker" that helps him
do research about peoples' transportation needs. "I ride the bus
to pick up information from riders about how well our transportation
system works for them." On the bus, Freedom attracts people's
attention and helps Rick start conversations about bus service
and other community transportation issues. Rick and Freedom also
visit schools, where Rick talks to children about guide dogs,
and they attend drivers' education classes where Rick teaches
budding drivers about the White Cane Law--a law that specifies
rules for yielding to pedestrians with canes or guide dogs.
Recently, Rick added yet another activity to his
already full schedule. He and about a dozen other people, most
with disabilities, signed up for "Utter Words," a communications
and leadership group modeled on the format pioneered by the famed
nonprofit organization, Toastmasters International.224 Weekly
meetings held at Disability Advocates of Kent County allow participants
to practice their public speaking skills and receive constructive
criticism from the group's coordinator and fellow participants.
Rick and many of the others joined the group to learn how to translate
their passions about disability-related and other issues more
effectively into messages that capture the attention of legislators.
"You've got to boil the message down to three to five minutes,
otherwise you lose them," explains Rick. In addition to being
a transportation advocate, Rick feels strongly about the need
for "money to follow the person" when it comes to health care,
and he has already been to the state capital to present a case
for shifting long-term care dollars from nursing homes to home-
and community-based care. With additional public speaking training,
Rick feels he'll be able to deliver the messages even more effectively.
Rick considers himself a voice for all the people
who are unable to go to meetings and be their own advocates because
they have to work to support themselves. "Even if I can make a
little dent in transportation and other policies, maybe these
people won't have it so hard in the future," he says. "When I
was working, I didn't have a lot of time for these issues, so
I made it my retirement goal. Many people helped me when I was
working. Now it's time for me to go out and give back to the community."
The 2000 N.O.D./Harris Survey of Community Participation
was an online survey of 535 people with disabilities and 614 people
without disabilities. The survey asked respondents about the extent
of their participation in a variety of community activities and
whether they felt connected to or isolated from the communities
in which they live. One theme to emerge from the survey findings
is that, overall, "people with disabilities feel more isolated
from their communities, participate in somewhat fewer community
activities, and are less satisfied with their community participation
than their counterparts without disabilities."225 When compared
with people without disabilities, people with disabilities are
almost twice as likely to say they are isolated from others and
one and one-half times more likely to say they are "left out of
things" in their communities. When asked how involved they are
in their communities, 35 percent of people with disabilities say
they are "not at all involved," compared with 21 percent of people
without disabilities. While people with disabilities and people
without disabilities seem to have a similar degree of knowledge
about how to become involved, people with disabilities are significantly
more likely than people without disabilities to say that they
never participate in religious services, local politics, and cultural
events.226
According to the 2000 N.O.D./Harris Survey of Community
Participation,low rates of participation among people with disabilities
is due, in part, to the lack of encouragement from community organizations:
"While approximately half of people with disabilities (and more
than 6 out of 10 people with severe disabilities) agree that community
organizations have not reached out to them to participate, only
35 percent of people without disabilities say the same."227 One
implication of these findings is that community organizations
"need to take a different, more concerted approach to reaching
out to this group, in particular those with severe disabilities."228
A community hardly can be called livable for people
with disabilities if they do not feel part of the social fabric
and are not involved in the community's civic, cultural, or social
activities. As the survey results suggest, it is not enough for
community organizations to simply offer such activities and provide
information about them. To be truly inclusive, community organizations
must actively encourage the participation of people with disabilities.
The community-based programs profiled in this chapter
were chosen not only because they actively reach out to people
with disabilities, but also because they make integration one
of their primary goals. A community where people with disabilities
routinely work, play, learn, and worship alongside people without
disabilities is a livable community indeed.
In Phoenix, Arizona, outdoor recreational activities
are accessible--and exciting--for people with disabilities.
Since 1973, the City of Phoenix Parks and Recreation
Department's Adaptive Recreation Services section has provided
year-round, inclusive recreational programs for children, teenagers,
and adults with disabilities.229 For example, River Rampage230
is a whitewater rafting trip for eight teenagers with disabilities
and eight at-risk teenagers. River Rampage receives additional
support from River of Dreams, a nonprofit organization, and recently
completed its eleventh year of operating three trips per summer.231,232
The Department's newest program is Daring Adventures,
an outdoor recreation program for teenagers and adults with and
without disabilities.233,234 Although some activities require
enrollment fees, participants have the option of providing volunteer
service hours in lieu of fees. Daring Adventures adaptive programs
include the following:
- Adaptive cycling consists of handcycles for people
with mobility impairments and tandem bicycles for people with
visual impairments. Participants meet for 1.5 hours every week
for six weeks to get accustomed to the handcycle or tandem bicycle,
and are then eligible to rent them on their own.
- Adaptive kayaking consists of one- and two-person
"sit-on-top" kayaks for people with visual or mobility impairments.
After completing a six- to eight-week instructional program
consisting of four hours per week, participants can rent kayaks
on their own.
- Sled ice hockey involves adjustable adaptive
ice sleds that can be used by all people with disabilities.
Three 8- to 10-week sessions with one hour of ice time per week
are offered. Two different ice rinks are used, one in Peoria
and one in Scottsdale. Tthe City of Peoria contributes ice time
for one of the sessions, while the City of Scottsdale provides
support for some of the staff.
- For cross-country skiing, skis with Velcro straps
for the waist, ankles, and knees and shortened ski pulls are
available for people with mobility impairments. A six-week program
of conditioning exercises followed by a weekend stay in Flagstaff
is offered twice a year. Cross-country skis are available for
people with other types of disabilities. The slopes have two
sets of parallel tracks, enabling a sighted person to ski alongside
a visually impaired skier.
- Hiking and backpacking is a new offering. The
program, which is in its beginning stages, will start with recreational
hikes along routes with little change in the terrain. Eventually,
guided hikes of various lengths and difficulties will be offered
for all people with disabilities. Hiking wheelchairs and assisted
hiking chairs are available to program participants.
- Wilderness camping trips take place at Camp Colley,
a three-hour drive northeast of Phoenix. The program uses a
camp area that has three platform tents with ramps that are
wheelchair accessible and two accessible portable toilets. Two
camping trips were completed in 2004.
Researchers at Arizona State University are compiling
information about program participants and estimate that close
to 400 people have participated in Daring Adventures programs,
80 percent of whom were people with disabilities.
Daring Adventures was funded by a three-year grant
from the U.S. Department of Education, beginning in October 2001
and slated to end September 2004. The grant supported a full-time
coordinator and equipment, with the City's Adaptive Recreation
Services supporting the remaining staff. The program will continue
through June 2005 because of the availability of funds resulting
from a vacated position. Plans are under way to seek additional
funds to extend the life of the program. Feedback from participants
has been very positive.
For more information, see the City of Phoenix, Arizona,
Web site at http://www.phoenix.gov/PRL/dadv.html.
For more information, contact Linda Tuck Phone:
(602) 534-5683 Email: linda.tuck@phoenix.gov
The Experiential Education Initiative
at the John F. Kennedy Center for the Performing Arts is an opportunity
for young people with disabilities to learn about the arts alongside
their peers without disabilities.235
The John F. Kennedy Center for the Performing Arts'
programs integrate people with and without disabilities in two
artistic internship programs. The Experiential Education Initiative
(EEI)236 is an internship program for young adults with cognitive
and developmental disabilities, funded by the Connors Foundation;237
the Vilar Institute for Arts Management Internship is for college-age
students (see Table 3).
The selection criteria238 for the two internship
programs are different, but the types of assignments and the job
requirements are virtually the same. Placements have included
assignments in administrative and artistic departments of the
Kennedy Center, including the Youth and Family Programs, the Eisenhower
Theater, the National Symphony Orchestra library, gift shops,
the volunteer office, and the Finance and Human Resources departments.
Placements are designed to help young people experience performing
arts–related careers beyond the more obvious roles of performer
or artist; examples of past positions held by interns include
graphic designer, Web coordinator, and grant writer.
To foster group cohesion, the number of EEI interns
is kept intentionally smaller than the number of Vilar interns.
All of the interns are required to submit weekly journals based
on their internships, receive the same stipend, and attend the
same seminars, social events, and performances.
Technically, both groups have a 40-hour work week,
but EEI interns usually spend 20 hours in their assigned roles
because they are required to attend performances and their transportation
time, which can be significant, is included in their work week.
In addition to developing work skills, priorities for the EEI
interns include exposure to the arts and development of social
skills.
Betty Siegel, Manager of Accessibility at the Kennedy
Center, believes that the program may affect future patterns of
hiring people with disabilities in arts-related careers. Exposure
to EEI interns already has had a positive effect on departments
at the Kennedy Center, and some have been specifically requesting
EEI interns. Siegel believes that current Vilar interns, who will
be the arts managers of tomorrow, will be inspired by their positive
experiences with their EEI colleagues to hire people with disabilities
in the future.
Two stories illustrate the successes that have been
achieved since the internships were first available in 2001:
Example 1: EEI interns
are admitted to the program through referrals from service providers,
which means that the EEI department is unaware of an intern's
skills until he or she begins working. As a result, restructuring
of assignments may be necessary. For example, when an intern
who did not know how to read arrived, his responsibilities were
shifted so that his main task was ushering at the Millennium
Stage Performances. The intern's supervisor showed a high level
of commitment to the objectives of the program when he assumed
responsibility to teach the young man to read using the book
on which the play was based.
Example 2: J.P. is an
adult with Downs syndrome who was unhappy in his job bagging
groceries, his only job since leaving school.239 The opportunity
to participate in EEI was a dream come true for J.P. because
it allowed him to combine working with his love of theater.
J.P.'s internship began in the Youth and Family Program, which
stages theater for young people. As part of his job, J.P. made
sure that the young performers were ready to go on stage when
needed. J.P. learned the duties of a rehearsal assistant, as
well as office tasks such as data entry and filing. J.P. particularly
enjoyed ushering and applied for a permanent position as an
usher at the Kennedy Center when it became available. J.P. went
through the regular application and training process--the combination
of his theatrical background and self-confidence in social situations
landed him the job.
For more information, contact Betty Siegel Manager
of Accessibility at the Kennedy Center Phone: (202) 416-8727 Email:
access@kennedy-center.org
AXIS Dance Company is paving the
way for a powerful and inclusive dance form called "physically
integrated dance."240
Since 1987, the AXIS Dance Company has been performing
a body of work developed by dancers with and without disabilities.
When Judith Smith became artistic director in 1997, she felt that
integrated dance was not getting the attention it deserved. She
also observed that people were unsure whether AXIS was providing
art or therapy, so she commissioned external choreographers to
create dance pieces for the group, which resulted in legitimizing
integrated dance and improving the quality and visibility of the
work.241 Smith found that the commissioned choreographers gained
something valuable from their experiences with the company as
well. Integrated dance has provided an entirely new palette of
movement and possibilities for icons in the dance world such as
Ann Carlson, Bill T. Jones, and Stephen Petronio.
The company consists of a dedicated group of dancers,
performers, and administrators; some juggle all three roles. Roughly
half of the seven core dancers dance on two legs; the other half
use wheelchairs or crutches. Some danced before acquiring their
disabilities; others grew up with disabilities and found dance
later in life. The company has created more than 30 repertory
works, 2 evening-length works, and 2 works for young audiences.
Based in the San Francisco Bay area, AXIS performs at major dance
venues around the country and nationwide242 and has won numerous
awards and honors for its work.243
AXIS spends roughly half of its time conducting
education and outreach activities in the Bay area and on tour.244
In 2003, AXIS served approximately 18,000 people, many of them
schoolchildren. The AXIS education and outreach program, entitled
"Dance Access," creates residencies for youth and adults with
and without disabilities and provides opportunities to experience
the Dance Company in a variety of ways, including the following:
- Adult Classes and Workshops--AXIS teaches a variety
of dance disciplines,245 offers master classes and
teacher training for concentrated study, and directs "performance
labs," which provide an opportunity for community members of
different ages, backgrounds, and abilities to design and create
a dance piece for presentation at various community settings.
- Youth activities--"Dance Access/KIDS" entertains
and educates about dance, disability, diversity, and inclusion.
Classes emphasizes children's creativity while encouraging cooperation
and communication. AXIS also conducts in-class presentations
and 30- to 40minute performances with questions and answers
for groups in schools or in the theater.
- Performances--AXIS tailors their performances
to specific needs and offers professional full-length performances
or less formal events. The company can travel with the full
ensemble or with a smaller group, presenting shows ranging from
30 to 90 minutes.
- Lecture Demonstrations--Lecture demonstrations,
including video presentations, slides or other media aids, and
short physical demonstrations, are designed for venues that
lack the space or resources for a performance or workshop but
are interested in learning about AXIS.
- Pre- and Post-Performance Q&As--Question
and answer sessions give audiences an opportunity to provide
feedback to the dancers about their work, and to discuss choreography
and dance and disability issues.
AXIS is supported by earned income from performances
and outreach and education work, and receives support from government
sources, private foundations, and individuals.246
For more information, see the AXIS Dance Company
Web site at http://www.axisdance.org.
FaithWays is hard at work dispelling the stigma and
isolation of mental illness by helping Minnesota's faith communities
become truly inclusive and caring.
"The faith community is in a unique position to
fight stigma and isolation, and also to spread a message of faith
and hope," says Mary Jean Babcock, director of FaithWays,247 a
grassroots organization that is part of the Minnesota Chapter
of the National Alliance for the Mentally Ill (NAMI). Babcock
explains:
It is not only people with mental illness themselves,
but also their families, that tend to isolate themselves. Faith communities can bring
issues out into the open, and by doing so they can provide a place where families truly feel
accepted and valued. Faith communities are on the frontline. If people can find acceptance
there, it can go a long way to help them gain acceptance in other parts of society.
FaithWays has worked throughout Minnesota since
2000, providing customized education programs and assistance on
a wide variety of mental health issues to congregations in many,
mostly Christian, denominations. Recently, they have begun to
work with the Buddhist community as well. Another organization,
the Mental Health Education Project, is a similar collaborative
effort of the Jewish community of Minneapolis and Saint Paul,
Minnesota.
FaithWays is designed to help congregations understand
mental illness and become more accepting of people with mental
illness. Its education program, "Breaking Down Barriers and Building
New Foundations," is specifically designed for faith communities.
Individuals tell of their personal experiences with particular
mental disorders to dispel myths and inform audiences about treatment
and community resources. FaithWays helps link congregations to
each other and to mental health agencies, and provides direct
technical assistance to congregation staff, religious educators,
caregivers, and volunteers as they work toward creating more inclusive
faith communities. It has held a conference on brain disorders,
which was tailored specifically to the faith community.
Usually, FaithWays is approached by a member of
a congregation--such as a family member of a person with mental
illness or a congregation staff person such as a parish nurse--for
help. FaithWays then evaluates the community's needs and provides
programming to respond to those needs. Members of the congregation
are often inspired to carry on after the programming has ended.
For example, after the Hosanna Lutheran Church in Forest Lake,
Minnesota, hosted a speaker from FaithWays' parent agency, NAMI,
Kathy and Dave Okeson began a support group for family members
of people with mental illness. "My husband and I have children
with mental illness," says Kathy Okeson, "we have received a lot
of encouragement from our church, and we wanted to create a network
in which family members can share information and resources, and
offer comfort to each other during difficult times." Kathy and
Dave both received facilitators' training, and attended a 12-week
course called "Family to Family" offered by NAMI. The support
group is thriving, and over half of the group's attendees are
now from outside the congregation. Other congregations have institutionalized
mental health advisory boards. One congregation's youth group
took on mental illness as their "social justice issue" for the
year. "Aside from helping parishioners find help and acceptance,"
says Babcock, "FaithWays' work also dispels misconceptions about
mental illness and helps people become more aware and more supportive
community members."
For more information, contact Mary Jean Babcock
Director, FaithWays Program, NAMI-MN Phone: (651) 645-2948, extension
107
In Harris County, Texas, voting has been made easier
for people with and without disabilities with a state-of-the-art,
user-friendly, electronic voting system.
Harris County, the largest county in Texas and the
third-largest county in the nation, fully implemented the eSlateTM
Electronic Voting System in November 2002. The system is accurate,
secure, and accessible to all voters, including people with visual
impairments and/or mobility impairments.248 It is programmed with
English, Spanish, and Vietnamese languages and has the ability
to add other languages.
The eSlateTM device is about the size of a legal
pad, 1 inch thick, and weight 5.2 pounds. Voters use a rotary
wheel to navigate through the ballot and select their vote by
pushing an "ENTER" button when their selection is highlighted.
The system does not allow voters to select more than the allowable
number of choices in a single race, but does allow voters to make
changes to their ballots and to skip individual races if they
so choose. After voters have entered their selections, the system
presents a summary of the voter's selections, which indicates
skipped races and allows voters to verify their votes and make
changes or corrections. After reviewing the summary page(s), the
voter must press the "CAST BALLOT" button and an American flag
icon appears on the screen, indicating that the vote has been
cast and counted.
The rotary interface makes eSlateTM more accurate
and durable than touch screens. The eSlateTM system records each
vote, tabulates vote totals, and reports and archives results.
All votes are private and cannot be traced to individual voters.
As a security measure, the "logic and accuracy testing" process,
whereby the system programming is tested and validated before
and after each election in front of witnesses, is used to ensure
that votes are counted and reported as they were cast.
The eSlateTM system is completely ADA compliant
and accommodates various devices that support voting by people
with disabilities. The system has a special interface for people
with mobility impairments, including movable buttons that can
be used as an alternate method of navigating the ballot and casting
votes. The system also accommodates breath-control devices, known
as "sip and puff," so that people with severe mobility impairments
can vote. For people with visual impairments or who have difficulty
reading, the system has an audio ballot reader. While the system
is designed for independent use, in-person help is available for
anyone who requests it at polling places.
In 1998, Beverly Kaufman, the Harris County clerk,
established a task force to explore a voting system that would
replace the aging punch-card method. The county evaluated several
options and postponed purchasing a new system until the technology
was more advanced. In 2001, limitations with the ability of the
older punch-card voting system to accommodate the length of Harris
County's ballot--as well as the existence of state legislation
requiring any Texas-acquired voting system to allow independent
voting by people with disabilities--spurred Harris County to act.
So, in 2001, Kaufman appointed a second task force,249 consisting
of government, community, and business leaders, and issued a request
for proposals from vendors with electronic voting systems approved
by the Texas Secretary of State. The task force reviewed the proposals,
met with the companies, and held community demonstrations before
selecting the eSlateTM Electronic Voting System, a product of
Hart InterCivic, Inc.250 Harris County spent more than $25 million
on the countywide electronic voting project, including the equipment,
long-term support services, and a comprehensive voter outreach
and education campaign.251
The eSlateTM Electronic Voting System was phased
in with "Early Voting"252 during the November 2001 election and
the March 2002 primaries, and was fully implemented by the November
2002 general elections. On November 5, 2002, more than 650,000
voters used the eSlateTM system in each of 720 polling locations
throughout Harris County and in 30 early voting locations with
little or no difficulty.
For more information about the eSlateTM Electronic
Voting System, see the Harris Votes Web site at http://www.harrisvotes.org/index2.htm.
Chapter 8: Putting It All Together
In previous chapters, we
presented a variety of examples of states, counties, and local
communities that have been working toward becoming more livable
for people with disabilities and older people in the areas of
housing, transportation, the physical environment, employment,
health and support services, and social and civic engagement.
We included descriptions of several federal regulations, programs,
and incentives that have facilitated state, county, and local
community action to address issues in each of these six areas.
While a number of communities have made great strides in one or
even several of these areas and have many successes to report,
no single community that we know of has accomplished all there
is to do in each category.
By and large, communities that strive to be more
livable for the elderly and people with disabilities--and everyone
else, for that matter--struggle with obstacles that limit what
is achievable. Scant resources or funding "silos" that restrict
how funds can be used; few incentives for cooperation or collaboration
among agencies and others in the community; lack of support from
the public or the Federal Government are just some of the complaints
from our sources. But as many of the examples in this report show,
communities often find creative ways to overcome obstacles and
make progress despite constraints.
Strategies and Policy Levers to Affect Change
If there is one action we can point to that helped
many, if not most, of the initiatives profiled in this report
become successful, it is the formation of strategic partnerships
that worked together to achieve the following goals:
- Leverage resources,
- Address consumers' needs in a coordinated and
comprehensive manner,
- Reduce fragmentation in the service delivery
system,
- Provide choice, and
- Implement policies and programs that help people
remain independent and involved in community life.
This is, in fact, the principle underlying the San
Mateo Strategic Plan--a description of which starts on page 142--and
the San Mateo community's efforts to improve quality of life for
elders and people with disabilities in their county. More than
a decade ago, several agencies in San Mateo formed a partnership
to blend these two populations and create one strategic plan that
addresses the preferences and needs of both. The process of developing
the strategic plan involved a wide range of community stakeholders
to ensure that its goals and objectives represented the vision
and mission of constituent agencies, as well as the aspirations
and needs of the people it was designed to serve. Since its inception,
the strategic plan has been the county's roadmap for improving
its service delivery system to increase quality of life for elders
and people with disabilities, and progress is monitored on a monthly
basis.
In addition to the important step of developing
strategic partnerships, communities profiled in this report have
employed four other broad strategies and policy levers that serve
as recommendations to other communities planning to expand access
to affordable housing, transportation, and employment opportunities;
make the built environment more accessible; reconfigure health
and support service delivery systems to be more in line with the
needs of the populations served; and promote their social and
civic engagement.
As the examples contained in this report show, these
four strategies can and should be used at every level of government--including
federal, state, county, and local--to affect change in any or
all of the areas included in our Framework of a Livable Community
for Adults with Disabilities:
Strategy 1. Consolidate administration and pool funds
of multiple programs to improve ease of access to, and information
about, benefits and programs for consumers.
This strategy is used to streamline operations,
eliminate redundancies, and leverage resources. An example of
this strategy is San Mateo's folding of the Area Agency on Aging
into the Aging and Adult Services Division, which is part of the
county's Health Services Department. As a result, the county's
various programs for adults are housed under one roof, and the
Division's Team Insuring Elder Support TIES Line--a centralized,
toll-free information and referral telephone line--is available
24 hours a day to help adults enter and navigate the entire county's
health and support services system.
Another example is STAR--the Sweetwater County,
Wyoming, public transportation authority--that replaced a number
of disparate health and human services agency-based transportation
services. STAR pools funds from more than 10 sources and uses
a centralized dispatch system to provide coordinated public transportation
that serves people with disabilities and the general public in
a rural environment.
Strategy 2. Use tax credits and other incentives
to stimulate change in individual and corporate behavior and encourage
investment in livable community objectives.
This strategy often is used to encourage affordable
housing development and to reduce the tax burden on individuals.
For example, housing programs, such as Austin's SMART Housing
Initiative, provide financial incentives for private construction
of affordable housing. The initiative gives housing authorities
first dibs on surplus city property at below market prices to
encourage construction of reasonably priced homes. Tax policy
that helps elders and people with disabilities stay in their homes
is exemplified by the Virginia Real Estate Tax Relief Program
for Elderly and Disabled Persons, which helps thousands of Virginians
reduce their housing costs so they can remain in their community.
Tax credits and other incentives, such as matching
funds, can be used to urge employers to hire people with disabilities
and encourage the private sector to make their businesses more
accessible to elders and people with disabilities.
Strategy 3. Provide a waiver or other authority to
help communities blend resources from multiple public funding
streams to provide and coordinate different services.
Some of the best examples of this policy lever can
be found in the health and support services Chapter 6 of this
report. There are a number of federal- and state-led initiatives
that use Medicaid waivers and other mechanisms to blend funding
streams; increase the availability of home- and community-based
services as an alternative to institutional care; support comprehensive,
CD care; and generally help states avoid costly fragmentation
and duplication of health care services.
Strategy 4. Require or encourage a private sector
match to leverage public funding and stimulate public-private
sector partnerships.
Several of the initiatives profiled in this report
depend on public-private partnerships to provide services to elders
and people with disabilities. The New York City NORC-SSPs, for
example, are funded through grants and/or in-kind contributions
from state and local government, housing and social service providers,
philanthropic organizations, and others to provide support services
in areas where a critical mass of older people lives.
Another example is the Texas Home of Your Own Coalition
(Texas HOYO), which brings in multiple partners from the private
and public sectors--including realtors, lenders, and state and
local housing organizations--to help people with disabilities
through every step of the process of home ownership.
Lessons Learned and Recommendations
The community initiatives described in this report
constitute only a fraction of all the efforts under way throughout
the United States to make communities more livable for elders
and people with disabilities. Despite many obstacles, these communities
have mobilized political will and taken action toward this goal.
A number of lessons can be gleaned from the initiatives profiled
in this report, many of which can serve as recommendations to
other communities that are planning to make greater livability
a priority.
Provide affordable, appropriate, accessible housing
- The lack of a coherent, comprehensive federal
housing policy coupled with the dizzying array of disparate
housing programs and agencies that have no relationship with
one another make navigating the housing landscape a daunting
prospect for all but those who are "in the know." To break through
this maze, it is important for the disability and aging communities
to build strong partnerships with the "affordable housing" community--an
alliance that traditionally has not been emphasized. Knowledge
about and creative use of all affordable housing programs is
necessary to expand rental housing programs or homeownership.
The Arc of Arkansas, for example, was able to draw on a variety
of sources, such as the Arkansas Development Finance Authority
HOME program, the Federal Home Loan Bank, Historic Preservation
Tax Credits, and a Landmark Grant from the Historic Preservation
Trust to renovate old buildings to provide new housing for their
target populations.
- Financial incentives for private construction
of affordable, accessible housing that is close to public transportation,
as well as incentives for setting aside a portion of newly built
or renovated units for lower-income individuals, are essential
to increase affordable housing options in some communities.
Such incentives should be actively promoted and perhaps made
even "sweeter" in areas where lack of affordable housing is
a critical issue.
- Increasing awareness among consumers about universal
design principles and promoting universal design and accessibility
features among urban planners and builders will go a long way
toward making communities more livable for everybody. The cost
of retrofitting a house or the built environment is substantially
higher than the cost of including accessibility features in
the first place. The Irvine, California, public education efforts
about the benefits of universal design could serve as a model
for other communities.
Ensure accessible, affordable, reliable, safe transportation
- One of the key informants interviewed for this
report said that transportation is more than trains, buses,
and cars--it is "an engine for economic prosperity that benefits
everyone." When even one segment of the population has limited
access to transportation, it is denied considerably more than
just a ride. Seen in this light, transportation must play a
central role in any discussion about community livability.
- Like housing and health care, the transportation
system involves multiple, disparate resources that sometimes
overlap and other times leave big gaps in service. And like
housing and health care, transportation is a big issue in most
U.S. communities. Judging from the community examples featured
in this report, coordinated public transportation systems that
unite disparate services and funding streams to create more
efficient, cost effective, and universally accessible transit
systems are more likely to provide choices and, therefore, meet
the needs and preferences of people with disabilities, older
people, and most everyone in the community. Consumer choice,
in fact, is a key component of a good transportation system--choice
in available modes of transportation as well as choice in where,
when, and how people are picked up and dropped off. Mr. Boger's
story at the beginning of this report is a perfect illustration.
He has three transportation options at all times--paratransit
service, public bus service, and taxi service--all of which
are accessible just outside his front door.
- Centralized computer and dispatch systems that
handle all registration, reservations, scheduling, route building,
and billing make paratransit and other on-demand transportation
systems more efficient and less frustrating for consumers.
- Advanced technology, such as personal digital
assistants and global positioning systems (GPS), has the potential
to assist people with disabilities and others in navigating
a community's thoroughfares and transportation options. New
uses for such technology--as the BrailleNote GPS system described
in this report illustrates--should be explored and encouraged.
Adjust the physical environment for inclusiveness
and accessibility
- As one of our key informants--an architect and
disability specialist--said during our interview, "When people
are sensitive to access issues for people with disabilities,
they are more willing to do things to improve the environment."
Some of the communities profiled in this report have instituted
such "sensitivity training" for employees of local government
agencies with very positive results. Such training should be
expanded to include the general public--having to confront access
problems on a personal basis is an eye-opening experience.
- In communities where accessibility is a priority--like
in Nashville, Tennessee, where the mayor made it his personal
mission to build and improve the sidewalks of the city and county--a
noticeable impact is made on the environment. But city planners,
who could have a huge impact on accessibility by educating local
government officials and including it as a priority in their
plans, are not always aware that access is a problem in their
communities. Sensitivity training can help, but including disability
issues in urban planning curricula--which currently gloss over
such issues--could be a more effective technique.
- Policymakers have another avenue at their disposal
to accelerate improved access to the built environment in their
communities: variances to zoning ordinances. In some communities,
adherence to strict zoning laws renders it nearly impossible
to make accommodations, while in others the mood is more relaxed.
The city of Portland, Maine, for example, is fairly lenient
in granting variances, and Portland has a national reputation
for being a "disability-friendly" city.
Provide work, volunteer, and education opportunities
- Technology is changing the nature of work today,
and it has the potential to help expand work opportunities for
people with disabilities in several ways: (1) by facilitating
education/training programs to help people enhance their skills;
(2) by providing "telework" opportunities so that people can
work remotely if they wish; and (3) as the Eastern Shore Business
Leadership Network's Web site demonstrates, by providing a means
to match qualified job candidates with employers.
- An education campaign for employers to increase
awareness about the value of employing people with disabilities
could help increase employment opportunities for people with
disabilities. As many of our examples demonstrate, when an organization
employs a person with a disability, as a regular employee or
as an intern, the employer generally is pleased with the results
and feels that that the employment benefited the organization
as much as the employee.
- To set an example for the private sector, federal,
state, and local government agencies need to serve as "model
employers" and increase the number of people with disabilities
who work in their agencies. In addition, businesses owned by
people with disabilities should be promoted throughout government
agencies. Through its "Procurement and Entrepreneurial Workgroup,"
for example, Chicago demonstrates its commitment to increasing
the number of businesses owned or operated by people with disabilities
that are certified to participate in procurement programs offered
by city agencies.
- Communities can help businesses make reasonable
accommodations for employees with disabilities by providing
them with funding and/or technical assistance. The "Chicago
as a Model City Workgroup," for example, set up a Reasonable
Accommodation Account to help city departments defray the costs
of making reasonable accommodations and provide them with technical
assistance. This accommodation could be extended to the private
sector as well, because the vast majority (90%) of workplace
accommodations cost $500 or less.
- The private sector must take the lead in expanding
work opportunities for, and promoting the hiring of, people
with disabilities. When Maryland's Salisbury Area Chamber of
Commerce sponsored a business leadership network to increase
work opportunities for people with disabilities, it legitimized
the mission and drew in its network of 4,000 >businesses and
organizations, significantly increasing the pool of potential
employers.
Any remaining disincentives to work--such as the
prospect of losing health care, Social Security benefits, or
other entitlements--need to be removed so that people with disabilities
are not penalized because they want or need to work.
Ensure access to key health and support services
- People with disabilities, like all people, prefer
to live at home and receive health care and support services
in their communities. But, given the current health care financing
structure and the fragmentation in the service delivery system,
serving people in community settings is a challenge. Despite
these obstacles, the community examples in this report illustrate
that mechanisms currently exist that can help reduce fragmentation
and inefficiencies, contain costs, and increase quality of care
in ways that are responsive to people's needs and preferences.
Following is a summary of some of these mechanisms:
- Care management or coordination, preferably
involving interdisciplinary teams of experts as well as the
consumer, is a way to ensure that the patient or client is
considered holistically (i.e., all needs are assessed and
addressed, not just those requiring immediate disease management).
When problems are caught and addressed early, decline in physical
or mental health and more frequent use of costly health care
services may be avoided later.
- CD care responds to people's innate desire
for personal control, autonomy, and choice. It allows the
consumer's needs and preferences to dictate where and when
services are to be delivered. Studies show that CD care leads
to better satisfaction and fewer unmet needs than do traditional
care models.
- When "money follows the person," financing
of health care and social services moves with the person to
the most appropriate and preferred setting. Instead of fitting
the person into predetermined service slots, because the financing
system requires it, "money follows the person" is a consumer-focused
approach, allowing the consumer's needs and preferences to
dictate the care plan and where and by whom services will
be delivered.
- Integrating the delivery of acute and long-term
care services financed by Medicare and Medicaid, using waivers
for example, can reduce costly fragmentation and duplication
of services and, instead, provide high-quality, flexible,
consumer-centered, comprehensive, and continuous care across
settings and providers.
- Supportive service programs that are linked
to housing involve residents in determining what services
should be provided, do not exclude recipients on the basis
of functional or economic status, and provide services efficiently
because they are delivered where people live.
Encourage participation in civic, cultural, social,
and recreational activities
- The 2000 N.O.D./Harris Survey of Community Participation
showed that people with disabilities feel more isolated from
their communities and participate in fewer activities than do
people without disabilities. According to survey findings, community
organizations should actively reach out to people with disabilities
to encourage and expand their participation in community activities.
All sectors need to be involved to achieve this objective, including
the public, private, and nonprofit sectors.
- Drawing people with disabilities into community
life does not mean creating "separate but equal" activities,
but rather ensuring that people with disabilities can avail
themselves of all of the opportunities offered to other members
of the community.
- It is reasonable to assume that communities will
always face financial and structural obstacles to becoming more
livable for people with disabilities. Intangible obstacles,
like the public's lack of awareness and understanding of the
difficulties people with disabilities face in their communities
on a daily basis, are perhaps even more pervasive and difficult
to overcome. But as the community examples in this report illustrate,
where there is political will, there are many possible, creative
ways to surmount the obstacles that prevent communities from
being more livable for everyone.
Strategic Plan 2000: Making San Mateo County Livable
for Older Adults and Adults with Disabilities
The needs of seniors
and adults with disabilities are the foundation upon which this
plan is constructed. While integrating the needs of these two
groups into one strategic plan is somewhat unusual, there are
many similarities that support addressing them in a single, comprehensive,
and coordinated delivery system. Both seniors and adults with
disabilities face comparable challenges and often need the same
services and supports to assist them in maintaining their quality
of life and maximizing their independence. Additionally, they
share many of the same social stigma and negative stereotyping.
We believe that, ideally, the best place for seniors and adults
with disabilities to live is in the community, and that it is
our responsibility to build upon the strengths of individuals
and to reduce the barriers that impede their ability to live there
comfortably and safely.
--County of San Mateo, Strategic Plan for Services
for Older Adults and Adults with Disabilities, FY 2000–FY 2005
Introduction
As we indicated earlier in this report, we have
not identified one single community that has accomplished all
there is to do in each of the six areas included in the Livable
Communities for Adults with Disabilities framework. Some communities,
however, have made extraordinary progress in becoming more livable
for people with disabilities and seniors. One such community is
San Mateo County.
Like counties across the United States, San Mateo
is facing a time of financial constraints. Providers and CBOs
that serve seniors and adults with disabilities especially are
feeling the crunch. Over the last few years, San Mateo has seen
the consolidation of agencies, termination of long-standing CBOs,
and dramatic decreases in the size of several organizations in
their service network. Even the county, which receives funding
from the state and Federal Government, has had to aggressively
seek out new sources of revenue to support programs that are not
mandated but are deemed important. A prime example is the need
to raise funds on an ongoing basis to support San Mateo's Supplemental
Meals on Wheels Program, which delivers meals to people, such
as younger people with disabilities, who do not qualify for the
Older Americans Act– funded Meals on Wheels Program.
While San Mateo's Aging and Adult Services Division
predicts increasing demand for services, the near-future funding
climate does not seem bright. Three things set San Mateo apart
from other communities and increase their chance of success: (1)
a long history of collaboration, (2) a Strategic Plan for Services
to Older Adults and Adults with Disabilities, and (3) the enviable
ability to mobilize political will to prioritize the provision
of appropriate services and the goal to improve quality of life
for vulnerable populations, even in hard times.
Following is a description of how San Mateo developed
their strategic plan, how the Aging and Adult Services Division
is organized, and what it has accomplished in each of the six
areas of the Livable Communities for Adults with Disabilities
framework. Their achievements in some areas are stronger than
in others--as is the case in most communities. Because it has
articulated its vision and broken it down into small, concrete,
actionable steps in its comprehensive strategic plan, San Mateo
County is more likely than others to achieve its objectives in
the long run.
Background
San Mateo County, California, is situated on a 30-mile-long
peninsula south of the city and county of San Francisco. The county's
450-square-mile area is 26 percent urban and 74 percent rural.
Some of those rural areas are geographically isolated and sparsely
populated.
According to Census 2000, the total population of
San Mateo County is 707,161. Twelve and a half percent, or 88,085
people, are 65 years old and older. Among those 21 to 64 years
of age, 16 percent (68,045) have a disability, and among those
age 65 and over, 36 percent (30,397) have a disability. Although
the majority (59.5%) of residents describe themselves as white,
San Mateo has a significant minority population. Latinos (22%)
and Asians (20%) account for 42 percent of the population, while
there is a relatively small population of African Americans (3.5%).253
San Mateo County is considered affluent. The median
household income is $70,819, but calculations of average income
are skewed by the county's proximity to the Silicon Valley, where
incomes are much higher. Despite the affluence that exists for
many, there are still individuals--especially minorities, seniors,
and adults with disabilities--who are living in poverty conditions.254
San Mateo is perceived as being a service-rich county
because it has a broad, coordinated continuum of services for
residents. Its Aging and Adult Services Division, located within
the County's Health Services Agency, houses a variety of programs
for adults 18 years of age and older and also serves as the county's
Area Agency on Agency. The following organizations and programs
are part of the Aging and Adult Services Division:
- Commission on Aging
- Commission on Disabilities
- Centralized Intake/TIES Line (toll-free information
and assistance)
- Multidisciplinary 24-hour Response Team
- In-Home Supportive Services/Public Authority
- Adult Protective Services
- Public Guardian/Conservator
- Representative Payee
- Case Management Programs (AIDS, AIDS Waiver,
Multipurpose Senior Services Program, Linkages)
The Division's 24-hour telephone line (1-800-675-8437)
and Centralized Intake Unit serve as the single point of entry
for adults into the system of publicly provided services. This
single point of entry makes the county's adult services system
more accessible, promotes comprehensive assessments of older adults,
and strengthens the coordination of care among programs. The Centralized
Intake Unit has a multidisciplinary team of professionals with
expertise in public health, mental health, adult protective services,
issues resulting from drug and alcohol misuse, and other related
services, as well as intake, assessment, and short-term case planning.
In addition to its in-house programs, the Division contracts with
CBOs that work in partnership with the county to provide a coordinated
system of care for seniors and adults with disabilities.
The Aging and Adult Services Division has three
formal advisory bodies--the Commission on Aging, Commission on
Disabilities, and In-Home Supportive Services Advisory Committee--
that advise the Division on issues related to their constituents
and provide opportunities for consumers and advocates to get involved
in the development of public policy.
The Process of Developing a Strategic Plan
In July 1992, the Aging and Adult Services Division
convened a broad-based group of people with disabilities, seniors,
caregivers, and service providers to form the New Beginning Coalition.
The mission of the New Beginning Coalition was to improve the
quality of life of San Mateo County's diverse population of older
persons and adults with disabilities. The Coalition set out to
meet this goal through the development of a long-range plan for
a continuum of services that would be responsive to the needs
of consumers, and acknowledge and incorporate the diversity that
exists in San Mateo County. The Coalition envisioned an ideal
service delivery system that would be integrated, flexible, and
consumer-driven, without artificial constraints posed by funding
sources.
A lengthy planning process involving more than 500
individuals ensued, and in 1995 the resulting Strategic Plan for
Services to Older Adults and Adults with Disabilities was officially
adopted by the San Mateo County Board of Supervisors, the Commission
on Aging, the Commission on Disabilities, and community organizations
throughout San Mateo County. Following the adoption of the Strategic
Plan, an Implementation Coordination Committee (ICC) was established
to serve as a central clearinghouse on Strategic Plan Implementation
activities. The ICC meets monthly to review progress in the implementation
of the Strategic Plan. To keep the community informed about how
the Plan is being implemented, the ICC produces a quarterly newsletter,
which is widely distributed.
In June 1999, the New Beginning Coalition, in collaboration
with the San Mateo County Commission on Aging and Commission on
Disabilities, began the development of an updated Strategic Plan.
Organizations throughout San Mateo County were invited to submit
copies of needs assessments, reports, and studies that affect
seniors and adults with disabilities in San Mateo County. This
information, along with resource materials from the Department
of Finance and various other organizations, was presented at the
New Beginning Coalition's Baseline Conference in October 1999.
The baseline material formed the foundation on which the new plan
was constructed. It included projections of the senior population,
number of adults with disabilities, and information on key indicators,
such as poverty, housing, and health issues.
From October 1999 through January 2000, representatives
from the New Beginning Coalition, Commission on Aging, Commission
on Disabilities, and Aging and Adult Services, facilitated a series
of 31 community forums to solicit input from consumers. Community
forums targeted a broad range of seniors and adults with disabilities
and, whenever necessary, were conducted in languages other than
English.
On January 25, 2000, a group of 80 providers and
consumers participated in a Strategic Planning Conference and
reviewed the input from the forums and the recommended strategies
for addressing the issues raised, which included health, transportation,
affordable/accessible housing, emergency preparedness, elder and
dependent adult abuse, access to information, and services and
supports.
In the months following the Strategic Planning Conference,
representatives from the New Beginning Coalition, Commission on
Aging, and Commission on Disabilities and Aging and Adult Services
reviewed the recommendations from the conference participants
and developed the goals and objectives of Strategic Plan 2000.
The work plans developed by the Commission on Aging and Commission
on Disabilities at their respective annual retreats also became
part of the Strategic Plan. Individual providers in the aging
and disabilities network were asked for input as well, and any
activities that corresponded to the Strategic Plan goals also
were included in the Plan, making it a countywide plan for meeting
the needs of seniors and adults with disabilities.
In October 2004, the Division held a Strategic Planning
Conference, this time with input from 40 community forums, to
decide on an action plan for 2005.
Strategic Plan 2000: Goals, Objectives, and Progress
Strategic Plan 2000 is a detailed document that
specifies seven goals, each with its own objectives, specific
actions that need to be taken to achieve the objectives, and a
timeframe in which to accomplish the objectives, ranging from
one to five years. The seven broad goals of the Strategic Plan
are as follows:
- Goal 1: To involve seniors and adults with disabilities
in all aspects of the advocacy, planning, delivery, and evaluation
of programs which serve them.
- Goal 2: To provide a coordinated network of services
and supports that responds to local community needs.
- Goal 3: To maximize the independence of seniors
and adults with disabilities by promoting affordable/accessible
housing and transportation in safe environments and ensuring
physical and programmatic access to community-based services
and supports.
- Goal 4: To provide information, education, training,
and consultation that enable individuals and organizations to
understand issues facing seniors and adults with disabilities,
be informed about resources, and connect with services and supports.
- Goal 5: To ensure that the network of services
and supports for seniors and adults with disabilities reflects
an understanding of and respect for the county's cultural and
racial diversity and is free of ethnic, cultural, sexual orientation,
and/or language barriers to use of services.
- Goal 6: To promote wellness and improve access
to a variety of prevention and intervention services.
- Goal 7: To improve the security and well-being
of seniors and adults with disabilities by responding to and
reducing the incidence of violence, abuse, and neglect in San
Mateo County.
Within these broad goals are numerous specific objectives,
many of which correspond to the six areas included in this report's
Livable Communities for Adults with Disabilities Framework. The
San Mateo County Aging and Adult Services Division, on its own
or through partnerships with other government agencies or providers,
has made progress in addressing each of these areas to make the
county more livable for older people and adults with disabilities.
Here is a sampling:
Provide affordable, appropriate, accessible housing
The Commission on Aging/Commission on Disabilities
Joint Housing Task Force has produced brochures on universal design
recommendations and residential visitability. Members have worked
with county and city planning departments in an effort to promote
those concepts, and these departments refer developers to the
task force for review of proposed property development plans.
The task force currently is developing a consumer resource guide
on affordable/accessible housing.
Ensure accessible, affordable, reliable, safe transportation
San Mateo County Aging and Adult Services and SamTrans
(the county's transit system) entered into a working partnership
to develop a 10-year plan for accessible transportation--the Strategic
Plan for Accessible Transportation Services (SPATS). The goal
of the project was to identify the needs of individuals not currently
served or underserved by the county's transportation system and
create a plan for a comprehensive, accessible transportation system
that responds to the needs of San Mateo County's seniors and adults
with disabilities.
Members of the Commission on Aging, Commission on
Disabilities, and New Beginning Coalition worked on the development
of the plan and are now involved in its implementation. The groups
are working with SamTrans on a comprehensive community education
program that will help individuals who are not familiar with public
transportation--especially those who have lost or are about to
lose their driver's licenses--overcome barriers that prevent them
from using the system.
Adjust the physical environment for inclusiveness
and accessibility
The Commission on Disabilities' ADA Committee has
been involved actively in the review of all county facilities
for accessibility and the development and implementation of the
county's ADA Transition Plan/Policies and Procedures.
All Aging and Adult Services, Commission on Aging,
and Commission on Disabilities meetings are held at accessible
locations, and assistive listening devices are available for those
with hearing impairments.
Provide work, volunteer, and education opportunities
The Division tries to set an example for other agencies
by hiring people with disabilities who not only bring a wealth
of professional experience to the job, but also provide a valuable
and personal perspective to the Division's work. At the moment,
two employees in the Division are people with disabilities.
In addition, the Division ensures that people with
disabilities and seniors are represented in its various committees
and commissions. For example, more than half of the commissioners
serving on the Commission on Aging are older people, and the consumers
serving on the Commission on Disabilities either have a disability
or a family member with a disability.
Ensure access to key health and support services
The Division's Supplemental Meals on Wheels program
expands the availability of home-delivered meals to adults under
60 who are unable to prepare meals for themselves and have no
one who can prepare the meals for them. The program was initiated
by the Area Agency on Aging (before it became part of the Aging
and Adult Services Division) to respond to the needs of nonseniors
with functional disabilities whose independence was jeopardized
without this type of support. Currently, the program is supported
by a combination of donations by program participants, grants,
and other fundraising efforts.
Encourage participation in civic, cultural, social,
and recreational activities
Each year, the San Mateo County Board of Supervisors
and Commission on Disabilities cosponsor the "People Who Care
Awards Dinner," which celebrates the contributions of agencies
and individuals who have improved the lives of people with disabilities
residing in San Mateo County.
In 2003, the event inaugurated the Art Showcase,
which highlighted the creative talents of San Mateo County's artists
with disabilities. Showcase sponsors included the San Mateo County
Board of Supervisors, Commission on Disabilities, the Arts Commission,
and ARTshare of San Mateo County. The success of the Art Showcase
has prompted sponsors to continue supporting this popular feature.
In 2004, 325 people attended the Awards Dinner/Art Showcase, and
it is fast becoming the social event of the season.
For more information, contact
Shea Muller
Planner
San Mateo County Aging and Adult Services
Division of Health Services Agencies
225 37th Avenue
San Mateo, CA 94403
Email: smuller@co.sanmateo.ca.us
Epilogue: Vision of a Livable Community
John Smith is 67 years old;
he is married and has two children and five grandchildren. Mr.
Smith relies on a wheelchair to get around his home and his community
and has lived in Model City his entire life.
About five years ago, Mr. and Mrs. Smith moved to
the second floor of an apartment building. Their spacious apartment,
built with universal design features, has a nice view of the tree-lined
street. The Smiths consider their housing expenses affordable,
as these costs, including utilities, account for less than 30
percent of their income. Their apartment building is one of several
buildings designed and constructed by Property Owners Inc. (POI).
POI was motivated to develop affordable, accessible housing by
the Low-Income Housing Tax Credit (LIHTC) created by the Tax Reform
Act of 1986. Under the LIHTC, property owners who allocate a specified
portion of housing units to low-income households receive a federal
tax credit that enables them to offset taxes on other income.255
Mr. Smith uses public transportation to get around
town. His commute to work is only 20 minutes by bus. There is
a bus stop on the corner of his apartment building and one block
away from the Medical Center where he works as a part-time billing
clerk. City buses run 24 hours daily and there is a bus stop about
every two blocks. Recently, the city expanded the distance between
the pole at the bus stop and the benches where people sit waiting
so that wheelchairs can easily fit through. In the past, Mr. Smith
had to maneuver off of the sidewalk into the busy street. Now
he just rolls right through and feels much safer. Each bus fits
two wheelchairs, and has an automated audible system to announce
upcoming bus stops for passengers with visual impairments. The
bus stops have Braille signs as well. Occasionally, Mr. Smith
takes a taxi to get where he needs to go. The Taxi Commission
is very proud of its Accessible Taxicab Program with accessible
cabs and mandatory disability awareness training for new drivers.
Most everything that Mr. Smith needs is easy to
get to. With curb cuts in all of the sidewalks, Mr. Smith can
easily roll himself to the neighborhood stores and take care of
his needs at the supermarket, bank, dry cleaners, pharmacy, and
more. About once a month, Mr. and Mrs. Smith go out to eat with
friends. Nearly all of the restaurants in Model City have Braille
embossed menus and accommodate diners with special dietary needs.
The city's commitment to inclusiveness is further evident in its
policy toward local businesses. Businesses without accessible
entrances are fined $100 a day until the entrances are modified.
The city has a similar program in which private citizens are trained
to write traffic tickets to people who abuse disabled parking
spaces. The funds collected from both of these programs are directed
toward integrated programs for people with and without disabilities.
For example, the Commission for People with Disabilities' Cultural
Committee uses a portion of these funds to plan outings for teenagers
with and without disabilities to sports events, zoos, movies,
and theme parks.
Mr. Smith is an avid sports fan and especially likes
going to baseball games. Model City's baseball stadium is equipped
with wheelchair seating and accessible restrooms and water fountains.
During the summer, Mr. Smith goes swimming with his grandchildren
in the city pool. The pool is equipped with access lifts and ramps
for Mr. Smith's wheelchair. And right next door is an accessible
adventure playground for children.
With five grandchildren, Mr. Smith is committed
to education. As a member of the Public School Educational Committee,
he makes arrangements for small groups of people with disabilities
to share their personal experiences with third graders. The Commission
for People with Disabilities supports several other education
programs. The Commission's Vocational Committee provides transition
services for high school students with disabilities that include
job training and placement at local businesses. Long-term on-the-job
monitoring and job coaching also are provided.
About a year ago, Mr. Smith was selected to serve
as a juror on a civil case. His wheelchair easily fit through
the court's entrance and the jury room. A sign language interpreter
was present during the trial because the attorney for the plaintiff
had a hearing impairment. In fact, the courthouse is fully accessible
to people with disabilities, as are the city's other municipal
buildings, including city hall and the police and fire stations.
Polling sites for voting are accessible with electronic voting
systems and one-on-one assistance available.
Recently, Model City's mayor implemented a citywide
information and referral service, whereby citizens who dial 311
on their telephones reach live operators 24 hours a day. Residents
can obtain information about government agencies, employment,
volunteer opportunities, education, transportation, housing, recreation,
health care, support groups, and disability-specific organizations.
The same information is available electronically on the City's
user-friendly Web site, and will be printed annually. The Mayor's
Disability Council holds monthly forums to discuss challenges
and identify successful practices among local businesses. The
latest success celebrated was the Visual Smoke Detector Giveaway
Program for people with hearing impairments. Recipients were identified
through the city's voluntary database of contact information for
people with disabilities in case of a disaster.
Mr. Smith is an active member of his community.
He works at the Medical Center, volunteers with the public school
system, uses community resources, and participates in cultural
activities and outdoor adventures. Mr. Smith feels very fortunate
to live in Model City, USA.
Model City is based on applications from the N.O.D.'s
Accessible America contest, and Rolling, a film by Gretchen Berland
and Mike Majoros.
Resources
Chapter 1: Elements of Livable
Communities for Adults with Disabilities
- American Association of Retired People (AARP),
http://www.aarp.org
- Access-A-Ride, http://www.mta.nyc.ny.us/nyct/paratran/guide.htm
- AdvantAge Initiative, http://www.advantageinitiative.org
- American Institute of Architects, http://www.aia.org
- Lincoln Square Neighborhood Center (LSNC), Naturally
Occurring Retirement Community-Supportive Services Program,
(212) 874-0864, extension
119
- National Organization on Disability (N.O.D.),
http://www.nod.org
- The Veterans Administration (VA) NY Harbor Healthcare
System of the VA NY/NJ Veterans Healthcare Network, http://www1.va.gov/visns/visn03/nyinfo.asp
- Visual Impairment Service Team Program (VIST),
http://www1.va.gov/visns/visn03/vistnyhhs.asp
- Home-Based Primary Care Program (HBPC), http://www1.va.gov/visns/visn03/hbpc.asp
Chapter 2: Provide Affordable, Appropriate, Accessible
Housing
- Alpha One, http://www.alpha-one.org
- City of Alexandria, Virginia Real Estate Tax
Relief Program for Elderly and Disabled Persons, http://alexandriava.gov/finance/rea_tax_relief.html
- Concrete Change, http://www.concretechange.org
- Consortium for Citizens with Disabilities, http://www.c-c-d.org
- Georgia's EasyLiving HomeCM Program, http://www.easylivinghome.org
and http://www.concretechange.org/ga_easy_living.htm
- Kim Wallace Adaptive Equipment Loan Program,
http://www.famemaine.com/ada/html/business/kimwallace-biz.htm
- S.M.A.R.T.TM Housing Policy Initiative, http://www.ci.austin.tx.us/ahfc/smart.htm
- Technical Assistance Collaborative (TAC), http://www.tacinc.org/index
- Texas Home of Your Own (HOYO) Coalition, http://www.onr.com/user/texashoyo
and http://www.cms.hhs.gov/promisingpractices/txhoya.pdf
- The Arc of Arkansas, http://www.arcark.org
- Universal Design: Homes for the Future Today,
http://www.cityofirvine.org/depts/cd/buildingsafety/accessibility_universal_design.asp
- U.S. Department of Housing and Urban Development
(HUD), http://www.hud.gov
Chapter 3: Ensure Accessible, Affordable, Reliable,
Safe Transportation
- Allegan County Transportation, http://www.mdot.state.mi.us/ptd/providers/allegan.cfm
- Americans with Disabilities Act (ADA), http://www.ada.gov
- Charlotte Area Transit Service, http://www.charmeck.org/Departments/CATS/About+Us/home.htm
- Disability Advocates of Kent County, http://www.disabilityadvocates.us
- Faith in Motion, http://www.graceoffice.org/fim.html
- Federal Transit Administration (FTA), http://www.fta.dot.gov
- Florida Coordinated Community Transportation Program,
http://www.dot.state.fl.us/ctd
- JAUNT, Inc., http://www.ridejaunt.org
- Job Access/Guaranteed Ride Home Program, http://www.outreach1.org/jbxs
- Job Access and Reverse Commute Program, http://www.fta.dot.gov/grant_programs/specific_grant_programs/4339_ENG_HTML.htm
- Metrolina Association for the Blind, http://www.mab-jlbm.com
- Rhode Island Public Transit Authority (RIPTA), http://www.ripta.com
- Sendero Group, http://www.gps-talk.com
- Transportation Options (TOPS), http://www.broward.org/tpi02700.htm
- United Spinal Association, http://www.unitedspinal.org
Chapter 4: Adjust the Physical Environment for Inclusiveness
and Accessibility
- AccessAbility Decal Program, http://bloomington.in.gov/egov/apps/services/index.pl?path=details&id=903&action=i&f
DD=1-303
- Americans with Disabilities Act (ADA), www.ada.gov
- Alpha One, http://www.alpha-one.org
- American Public Works Association, http://www.apwa.net
- Cambridge Commission for Persons with Disabilities,
http://www.ci.cambridge.ma.us/~DHSP/resources/disabil.html
- Comprehensive Sidewalk Program, Nashville, Tennessee,
http://pw.nashville.gov/WEBPROD/SidewalkMain.asp
- Façade Improvement Program, Cambridge,
Massachusetts, http://www.cambridgema.gov/~CDD/econdev/capital/fip.html
- Greater Portland Landmarks Web Site, http://www.portlandlandmarks.org
- Project Civic Access, http://www.usdoj.gov/crt/ada/civicac.htm
- The Access Board, http://www.access-board.gov
- U.S. Department of Justice, http://www.usdoj.gov
Chapter 5: Provide Work, Volunteer, and Education
Opportunities
- AbilityLinks.org, http://www.abilitylinks.org
- Alpha One, http://www.alpha-one.org
- Career Alliance, Inc., http://www.careeralliance.org
- Chicago Businessland Leadership Network (CBLN),
http://www.cbln.com
- Computer/Electronic Accommodations Program (CAP),
http://www.tricare.osd.mil/cap
- Customized Works!, http://www.careeralliance.org/cworks
- National Disability Mentoring Day (NDMD), http://www.dmd-aapd.org
- Eastern Shore Business Leadership Network, http://www.esbln.org
- Equal Employment Opportunity Commission (EEOC),
http://www.eeoc.gov
- Governor's QUEST Internship Program for Persons
with Disabilities, sserra@dbm.state.md.us
- Internal Revenue Service (IRS), http://www.irs.gov
- Job Accommodation Network (JAN), Office of Disability
Employment Policy (ODEP),
- U.S. Department of Labor, http://www.jan.wvu.edu
- John J. Heldrich Center for Workforce Development,
Rutgers, The State University of New Jersey, http://www.heldrich.rutgers.edu
- Mayoral Task Force on Employment of People with
Disabilities, Chicago, Illinois, http://www.disabilityworks.org
- National Organization on Disability (N.O.D.),
http://www.nod.org
- New Freedom Initiative (NFI), http://www.whitehouse.gov/news/freedominitiative/freedominitiative.html
- One-Stop Career Centers, http://www.dol.gov/dol/topic/training/onestop.htm
- Rehabilitation Services Administration, U.S.
Department of Education, http://www.ed.gov/about/offices/list/osers/rsa
- Social Security Administration (SSA), http://www.ssa.gov
- Ticket to Work (TTW) and Self-Sufficiency Program,
http://www.yourtickettowork.com
- U.S. Business Leadership Network (USBLN), http://www.usbln.com
- U.S. Department of Labor Office of Disability
Employment Policy, http://www.dol.gov/odep
- Uptown Bill's Small Mall, http://www.uptownbills.org
Chapter 6: Ensure Access to Key Health and Support
Services
- Centers for Medicare and Medicaid Services (CMS),
http://www.cms.hhs.gov
- Healthy People 2010, http://www.healthypeople.gov
- Minnesota Disability Health Options (MnDHO),
http://www.dhs.state.mn.us/main/groups/healthcare/documents/pub/dhs_id_006272.hcsp
- National Cooperative Bank Development Corporation
(NCBDC), http://www.ncbdc.org
- Office of the Assistant Secretary for Planning
and Evaluation, http://aspe.hhs.gov
- Robert Wood Johnson Foundation (RWJF), http://www.rwjf.org
- Wisconsin Partnership Program, http://www.dhfs.state.wi.us/WIpartnership
- The Arc of Arkansas, http://www.arcark.org
Chapter 7: Encourage Participation in Civic, Cultural,
Social, and Recreational Activities
- Adaptive Recreation Services, City of Phoenix
Parks and Recreation Department, http://www.phoenix.gov/PRL/adrecsvc.html#RIVER
- AXIS Dance Company, http://www.axisdance.org
- Daring Adventures, http://www.phoenix.gov/PRL/dadv.html
- Experiential Education Initiative (EEI), The
John F. Kennedy Center for the Performing Arts, access@kennedy-center.org
- Faith in Motion, http://www.graceoffice.org/fim.html
- FaithWays, http://mn.nami.org/faithways.html
- Harris County Clerk, Houston, Texas, http://www.harrisvotes.org/index2.htm
- National Alliance for the Mentally Ill (NAMI),
http://www.nami.org
- National Organization on Disability (N.O.D.),
http://www.nod.org
- River Rampage, http://www.phoenix.gov/PRL/adrecsvc.html#RIVER
- Toastmasters International, http://www.toastmasters.org
Appendix: Mission of the National Council on Disability
Overview and Purpose
The National Council on Disability (NCD) is an independent
federal agency with 15 members appointed by the President of the
United States and confirmed by the U.S. Senate. The overall purpose
of NCD is to promote policies, programs, practices, and procedures
that guarantee equal opportunity for all individuals with disabilities,
regardless of the nature or significance of the disability, and
to empower individuals with disabilities to achieve economic self-sufficiency,
independent living, and inclusion and integration into all aspects
of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing
basis, policies, programs, practices, and procedures concerning
individuals with disabilities conducted or assisted by federal
departments and agencies--including programs established or
assisted under the Rehabilitation Act of 1973, as amended, or
under the Developmental Disabilities Assistance and Bill of
Rights Act, as well as all statutes and regulations pertaining
to federal programs that assist such individuals with disabilities--to
assess the effectiveness of such policies, programs, practices,
procedures, statutes, and regulations in meeting the needs of
individuals with disabilities.
- Reviewing and evaluating, on a continuing basis,
new and emerging disability policy issues affecting individuals
with disabilities at the federal, state, and local levels and
in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts and the impact of such efforts on individuals
with disabilities, access to health care, and policies that
act as disincentives for individuals to seek and retain employment.
- Making recommendations to the President, Congress,
the Secretary of Education, the director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies about ways to better promote equal opportunity,
economic self-sufficiency, independent living, and inclusion
and integration into all aspects of society for Americans with
disabilities.
- Providing Congress, on a continuing basis, with
advice, recommendations, legislative proposals, and any additional
information that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities
Act of 1990 (ADA) (42 U.S.C. § 12101 et seq.).
- Advising the President, Congress, the commissioner
of the Rehabilitation Services Administration, the assistant
secretary for Special Education and Rehabilitative Services
within the Department of Education, and the director of the
National Institute on Disability and Rehabilitation Research
on the development of the programs to be carried out under the
Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner of the Rehabilitation
Services Administration with respect to the policies and conduct
of the administration.
- Making recommendations to the director of the
National Institute on Disability and Rehabilitation Research
on ways to improve research, service, administration, and the
collection, dissemination, and implementation of research findings
affecting people with disabilities.
- Providing advice regarding priorities for the
activities of the Interagency Disability Coordinating Council
and reviewing the recommendations of this council for legislative
and administrative changes to ensure that such recommendations
are consistent with NCD's purpose of promoting the full integration,
independence, and productivity of individuals with disabilities.
- Preparing and submitting to the President and
Congress an annual report titled National Disability Policy:
A Progress Report.
International
In 1995, NCD was designated by the Department of
State to be the U.S. Government's official contact point for disability
issues. Specifically, NCD interacts with the special rapporteur
of the U.N. Commission for Social Development on disability matters.
Consumers Served and Current Activities
Although many government agencies deal with issues
and programs affecting people with disabilities, NCD is the only
federal agency charged with addressing, analyzing, and making
recommendations on issues of public policy that affect people
with disabilities, regardless of age, disability type, perceived
employment potential, economic need, specific functional ability,
veteran status, or other individual circumstance. NCD recognizes
its unique opportunity to facilitate independent living, community
integration, and employment opportunities for people with disabilities
by ensuring an informed and coordinated approach to addressing
the concerns of people with disabilities and eliminating barriers
to their active participation in community and family life.
NCD plays a major role in developing disability
policy in America. In fact, NCD originally proposed what eventually
became ADA. NCD's present list of key issues includes improving
personal assistance services, promoting health care reform, including
students with disabilities in high-quality programs in typical
neighborhood schools, promoting equal employment and community
housing opportunities, monitoring the implementation of ADA, improving
assistive technology, and ensuring that people with disabilities
who are members of diverse cultures fully participate in society.
Statutory History
NCD was established in 1978 as an advisory board
within the Department of Education (P.L. 95602). The Rehabilitation
Act Amendments of 1984 (P.L. 98-221) transformed NCD into an independent
agency.
Endnotes
1 White House
Domestic Policy Council. (2004, March). The President's New Freedom
Initiative for People with Disabilities: The 2004 Progress Report,
Executive Summary. Washington, DC: White House Domestic Policy
Council. Retrieved on September 20, 2004, from http://www.whitehouse.gov/infocus/newfreedom/toc-2004.html.
2 AdvantAge Initiative Web site at www.advantageinitiative.org.
3 O'Hara, A., & Miller, E. (2000, August). Going
It Alone: The Struggle to Expand Housing Opportunities for People
with Disabilities.Boston, MA: Technical Assistance Collaborative,
Inc. & Washington, DC: Consortium for Citizens with Disabilities
Housing Task Force. Retrieved on September 20, 2004, from http://www.c-c-d.org/going_alone.pdf.
4 The Arc of Arkansas & United Cerebral Palsy
(UCP) Public Policy Collaboration. (2004, July). Housing for People
with Disabilities: The Crisis Continues (fact sheet). Washington,
DC: The Arc & UCP Public Policy Collaboration. Retrieved on
September 20, 2004, from http://www.thearc.org/ppc/housingfacts.doc.
5 O'Hara & Miller, 2000.
6 U.S. Department of Transportation, Bureau of Transportation
Statistics. (2003). Freedom to TravelBTS 03-08. Washington, DC:
Bureau of Transportation Statistics. Retrieved on September 13,
2004, from http://www.bts.gov/publications/freedom_to_travel.
7 National Organization on Disability (N.O.D.).
(2004a). "Key Indicators from the 2004 N.O.D./Harris Survey of
Americans with Disabilities." Washington, DC: N.O.D. Retrieved
on August 25, 2004, from http://www.nod.org/pdffiles/harris2004/harris2004_summ.pdf.
More information on this survey is available at: http://www.nod.org/content.cfm?id=1537.
8 Hanson, K., Neuman, T., & Voris, M. (2003,
December). "Understanding the Health-Care Needs and Experiences
of People with Disabilities: Findings from a 2003 Survey." Menlo
Park, CA: The Henry J. Kaiser Family Foundation. Retrieved from
http://www.openminds.com/indres/kaisersurvey.pdf.
9 Harris Interactive, Inc. (2000a). 2000 N.O.D./Harris
Survey of Community Participation.New York: Harris Interactive,
Inc.
10 Waldrop, J., & Stern, S.M. (2003, March).
Disability Status: 2000. Census 2000 Brief. Washington, DC: U.S.
Census Bureau. Retrieved from http://www.census.gov/prod/2003pubs/c2kbr-17.pdf.
11 Manton, K.G., Corder, L., & Stallard, E.
(1997). Chronic disability trends in elderly United States populations:
1982–1994. Proceedings of the National Academy of Sciences,
94(6):2593– 2598; Manton, K.G., & Gu, X. (2001). Changes
in the prevalence of chronic disability in the United States black
and nonblack population above age 65 from 1992 to 1999. Proceedings
of the National Academy of Sciences, 98 (11), 6354–6359.
12Gibson, M.J., Freiman, M., Gregory, S., Kassner, E., Kochera,
A., Mullen, F., Pandya, S., Redfoot, D., Straight, A., & Wright,
B. (2003). Beyond 50 2003: A Report to the Nation on Independent
Living and Disability. Washington, DC: AARP, p. 40.
13 Waldrop & Stern, 2003.
14 Ibid.
15 Ibid.
16 Gibson et al., 2003, p. 137.
17 AARP/Harris Interactive Survey of Persons 50
and Older with Disabilities. (2002, September).
18 Gibson et al., 2003, p. 152.
19 Ibid.
20 Ibid, p. 141.
21 Ibid, p. 153.
22 White House Domestic Policy Council, 2004.
23 Feldman, P.H., Oberlink, M.R., Simantov, E.,
& Gursen, M.D. (2004). "A Tale of Two Older Americas: Community
Opportunities and Challenges." AdvantAge Initiative 2003 National
Survey of Adults Aged 65 and Older. New York, NY: Center for Home
Care Policy and Research, Visiting Nurse Service of New York.
Retrieved at http://www.vnsny.org/advantage/AI_NationalSurveyReport.pdf.
24 Gibson et al., 2003, p. 177.
25 Ibid, p. 145.
26 The Veterans Administration (VA) NY Harbor Healthcare
System of the VA NY/NJ Veterans Healthcare Network. For more information,
see the VA Web site at http://www1.va.gov/visns/visn03/nyinfo.asp.
27 Gibson et al., 2003, pp. 120–55.
28 For more information, see http://www.aia.org/liv_principles.
29 The AdvantAge Initiative Elder-Friendly Community Framework
was developed on the basis of background research and 14 separate
focus groups conducted with people in three age groups--older-old
(ages 75+), younger-old (ages 60-74), and younger ages (ages
35-59)--as well as community leaders in four different cities
around the country: Allentown, PA; Asheville, NC; Chicago, IL;
and Long Beach, CA. Focus group participants were asked to critique
their communities and provide opinions about the elements of an
ideal, "elder-friendly" community that addresses the needs and
aspirations of well elders, as well as elders with disabilities
or at risk of developing disabilities. The background research
and focus group results were synthesized into a framework having
four "domains" with three or four specific "dimensions" in each.
30 For more information about Alpha One, see http://www.alpha-one.org.
31 The Kim Wallace Adaptive Equipment Loan Program
is a program of the Finance Authority of Maine (FAME), an independent
state agency that develops and administers programs that help
people and businesses achieve success by providing access to capital.
For more information, see http://www.famemaine.com.
32 O'Hara & Miller, 2000.
33 The Arc & UCP Public Policy Collaboration,
2004.
34 For example, renters who pay 50 percent or more
of their income on housing or who live in severely substandard
or inadequate housing.
35 O'Hara & Miller, 2000, p. 7.
36 O'Hara, A., & Miller, E. (2001). Priced Out
in 2000. Boston, MA: Technical Assistance Collaborative, Inc &
Washington, DC: Consortium for Citizens with Disabilities Housing
Task Force, p. 6. Retrieved at http://www.tacinc.org.
37 Commission on Affordable Housing and
Health Facility Needs for Seniors in the 21st Century. (2002,
June 30). A Quiet Crisis in America: A Report to Congress by the
Commission on Affordable Housing and Health Facility Needs for
Seniors in the 21st Century. Washington, DC: Commission on Affordable
Housing and Health Facility Needs for Seniors in the 21st Century,
p.5. Retrieved on at http://www.seniorscommission.gov/pages/final_report/index.html.
38 U.S. Department of Housing and Urban Development.
(1999). Housing our Elders, Washington, DC: U.S. Department of
Housing and Urban Development, Office of Policy Development and
Research, p. 37. Retrieved at http://www.huduser.org/publications/hsgspec/housec.html.
39 O'Hara & Miller, 2000, p. 6.
40 Project Access is a pilot program of the U.S.
Department of Housing and Urban Development.
41 O'Hara & Miller, 2001, p. 3.
42 O'Hara & Miller, 2000, p. 10.
43 O'Hara & Miller, 2000,p. 13.
44 Neighborhood Housing and Community
Development, City of Austin. (2004, Spring). S.M.A.R.T.Housing TMPolicy Resource GuideAustin, TX: Neighborhood
Housing and Community Development, City of Austin. Retrieved at
http://www.ci.austin.tx.us/ahfc/downloads/smartguide.pdf.
45 Austin Housing Finance Corporation Web site at
http://www.ci.austin.tx.us/ahfc/smart.htm.
46 Personal correspondence, Stuart Hersh, S.M.A.R.T.
Housing Coordinator, Neighborhood Housing and Community Development,
City of Austin, September 27, 2004.
47 Austin's Visitability Ordinance sets standards
for single-family homes, duplexes, and triplexes. Austin also
sets standards for accessibility in multifamily homes.
48 Tillery, D. (2004). Supportive Housing Initiative
in Arkansas. Paper prepared for Information Brokering for Long-Term
Care, a project of the Center for Home Care Policy & Research,
Visiting Nurse Service of New York; funded by The Robert Wood
Johnson Foundation, p. 5.
49 Funds were used from the Arkansas Development
Finance Authority (ADFA) HOME program, the Federal Home Loan Bank,
Historic Preservation Tax Credits, and a Landmark Grant from the
Historic Preservation Trust (Tillery, 2004, p. 12).
50 The Arc, Trinity Court, Web site at http://www.arcarts.org/trinity_court.htm.
51 Ibid.
52 The Arc, Eastside Lofts, Web site at http://www.arcarts.org/eastside%20lofts.htm.
53 Tillery, 2004.
54 The Arc, Westside Lofts. Web site at http://www.arcarts.org/westside_lofts.htm.
55 Personal communication with Cynthia Stone, Chief
Operating Officer, The Arc of Arkansas, May 17, 2004.
56 City of Alexandria, Virginia, Finance Department.
(2004). Real Estate Tax Relief Program for Elderly and Disabled
Persons Tax Year 2004.Retrieved on September 8, 2004, from http://ci.alexandria.va.us/finance/rea_tax_relief.html.
57 Personal correspondence, Gary Rossi, Revenue
Collections Specialist, Revenue Division, Department of Finance,
City of Alexandria, May 11, 2004.
58 Gross household income includes the income of
both spouses and any income above $8,500 per year of other relatives
living in the home.
59 Personal correspondence, Gary Rossi, September
28, 2004.
60 The National Home of Your Own Alliance (HOYO)
grew from a locally based homeownership pilot program in New Hampshire.
HOYO was established in 1993 as a five-year agreement between
the Institute on Disability at the University of New Hampshire
and the Administration on Developmental Disabilities. While funding
for the national program has ended, the information, referral
telephone number, and Web site are still valid and operational.
61 Lenders may be state and local housing development
and finance agencies, banks, savings and loans, credit unions,
and mortgage companies.
62 Disability organizations may be state and local
government agencies; private service providers; and family, advocacy,
and consumer groups.
63 Personal Communication, Jean Langendorf, United
Cerebral Palsy of Texas, May 2004.
64 The coalition includes AARP Georgia, Atlanta
Regional Commission, Concrete Change, Easter Seals–Southern
Georgia, Fannie Mae Atlanta Partnership Office, Georgia Department
of Community Affairs, Governor's Council on Developmental Disabilities,
Home Builders Association of Georgia, Shepherd Center, the Statewide
Living Council of Georgia, and the Universal Design Alliance.
65 Concrete Change. Georgia EasyLiving Home CMProgram. Information available at http://www.concretechange.org/ga_easy_living.htm.
66 Personal communication, Bonnie Bonham, Program
Director, EasyLiving HomeCM, May 20, 2004.
67 EasyLiving HomeCM Web site at http://www.easylivinghome.org.
68 Kochera, A. (2002). Accessibility and Visitability
Features in Single-Family Homes: A Review of State and Local Activity.
Washington, DC: AARP Public Policy Institute. Retrieved from http://research.aarp.org/il/2002_03_homes.pdf.
69 City of Irvine. (2000, December 14). New Universal
Design Program Makes New Homes in Irvine More Accessible and Livable
for All Ages and Abilities(Press Release #2000-48).Irvine, CA:
City of Irvine.
70 Kochera, 2002.
71 City of Irvine, 2000.
72 The Irvine Company is a 110-year-old, privately
held real estate development company best known for the balanced,
sustainable communities it has planned and developed on The Irvine
Ranch® in Orange County, California. The Irvine Ranch is considered
one of the largest and most successful master-planned urban environments
in the United States. Approximately 240,000 people live on The
Irvine Ranch. For more information, see http://www.irvinecompany.com.
73 City of Irvine. (2002, July 9). Request for City
Council Action: Report on the Universal Design Program for New
Homes. Irvine, CA: City of Irvine.
74 Participating builders include Beazer Homes,
Brookfield Homes, California Pacific Homes, Centex Homes, Fieldstone
Communities, Greystone Homes, John Laing Homes, K. Hovanian Homes,
Lennar Homes of California, Richmond American Homes, Shea Homes,
Standard Pacific of Orange County, Taylor Woodrow Homes, William
Lyon Homes.
75 City of Irvine, 2002.
76 Ibid.
77 Personal Communication, Eric Tolles, September
27, 2004.
78 U.S. Department of Transportation, Bureau of
Transportation Statistics, 2003. Retrieved on May 10, 2004, from
http://www.bts.gov/publications/freedom_to_travel/pdf/entire.pdf.
79 Ibid, p. 5.
80 Ibid.
81 Bureau of Transportation Statistics, U.S. Department
of Transportation. (2003, April). "Transportation Difficulties
Keep Over Half a Million Disabled at Home." BTS Issue Brief, 3.
Retrieved on July 6, 2004, from http://www.bts.gov/publications/issue_briefs/number_03.
82 Translated literally, paratransit means "alongside
transit." It refers to ADA-required complementary transit services
that provide accessible transportation to people with mobility
impairments who live in areas served by fixed-route public transit
systems, but are not able to use the fixed-route service. 49 Code
of Federal RegulationsParts 27, 37, and 38, "Transportation for
Individuals With Disabilities; Final Rule," published in the Federal
Register, September 6, 1991.
83 The Access Board. Manuals for ADA Accessibility
Guidelines for Transportation Vehicles. Retrieved on May 12, 2004,
from http://www.access-board.gov/transit/manuals/Manuals-list.htm.
84 If vehicles are remanufactured after August 25,
1990, to extend their useful life for 5 years or more in the case
of buses and rapid and light rail vehicles, or for 10 years in
the case of commuter and intercity rail cars, then the vehicles
must be made accessible to the maximum extent feasible. Retrieved
on May 10, 2004, from http://www.access-bord.gov/transit/manuals/Transit%20Manual%20-%20intor.htm.
85 Humm, A. (2004, May 5). "12,000 NYC Taxis; Five
Are Accessible," Gotham Gazette. Retrieved on September 3, 2004,
from www.gothamgazette.com/article/civilrights/20040507/3/970;
and Masburn, R. (2004, April 22) "Wheelchair Accessible London,"
The New York Times. Retrieved on September 3, 2004, from http://www.nytimes.com/2004/04/18/travel/18wheelchair.html.
86 Dorn, J.L. (2002, June 20). "Testimony before
the Subcommittee on Highways and Transit of the Committee on Transportation
and Infrastructure." U.S. House of Representatives. Retrieved
on May 13, 2004, from http://www.fta.dot.gov/library/intro/st/062002.html.
87 Easter Seals, Project ACTION. (2004, Spring).
Leaders at Forum Gather to Proclaim: "United We Ride." Project
ACTION Update(Accessible Transportation in our Nation).Retrieved
on June 12, 2004, from http://projectaction.easterseals.com/site/DocServer/spring_2004pdf.pdf?docID=5264.
88 "Framework for Action Building The Fully Coordinated
Transportation System." Retrieved from http://www.fta.dot.gov/CCAM/framework.html.
89 In this context, coordination means "pooling
the transportation resources and activities of several human service
agencies with one another and/or with mass transit operation."
For a full description of the programs and more examples see Burkhardt,
J.E. (2000, September). Coordinated Transportation Systems. Washington,
DC: The Public Policy Institute, AARP. Retrieved on May 12, 2004,
from http://research.aarp.org/consume/2000_16_transport.pdf; and
Federal Transit Administration (FTA). July 7, 2004. Innovative
State & Local Planning for Coordinated Transportation.Retrieved
on July 7, 2004, from http://www.fta.dot.gov/907_ENG_HTML.htm.
90 Bush, President George W. (2001, February). "Foreword"
to the New Freedom Initiative. Retrieved on June 17, 2004, from
http://www.whitehouse.gov/news/freedominitiative/freedominitiative.html.
91 The White House. (2004, March). New Freedom Initiative:
A Progress Report.Retrieved on June 17, 2004, from www.whitehouse.gov/infocus/newfreedom/nfiprogress.pdf.
92 Information on the services retrieved on May
19, 2004, from http://www.dot.state.fl.us/ctd/; also see Florida
Association of Coordinated Transportation Systems Incorporated,
"Ensuring the Mobility for Florida's Transportation Disadvantaged."
Retrieved on May 19, 2004, from http://www.flafacts.com.
93 "Transportation disadvantaged" means "persons
who because of physical or mental disability, income status, or
age are unable to transport themselves or to purchase transportation
and are, therefore, dependent upon others to obtain access to
health care, employment, education, shopping, social activities,
or other life-sustaining activities, or children who are handicapped
or high-risk or at-risk" (Florida Statutes, Chapter 427.011-s
411.202). Retrieved on May 19, 2004, from http://www.broward.org/tpi02600.htm.
94 For information on the program, see Broward County
Florida Transportation Planning Division, Paratransit/ADA. Retrieved
on May 19, 2004, from http://www.broward.org/tpi02700.htm.
95 For a detailed description of eligibility, see
"Broward County Transit ADA Paratransit Service Eligibility Criteria
Guidelines." Retrieved on May 19, 2004, from http://www.broward.org/bct/criteria.pdf.
96 JAUNT, Inc. Retrieved on September 5, 2003, from
http://www.ridejaunt.org.
97 Federal Transit Administration. Innovative State
& Local Planning for Coordinated Transportation.Retrieved
on June 7, 2004, from http://www.fta.dot.gov/907_ENG_HTML.htm;
also see Sweetwater Transit Authority Resources (STAR). Retrieved
on June 7, 2004, from http://www.nccic.org/ccpartnerships/profiles/star.htm.
98 For more information about Job Access and Reverse
Commute (JARC) grants, contact Sue Masselink, Office of Program
Management, Federal Transit Administration, Room 9315, 400 7th
Street, SW., Washington, DC 20590; Phone: (202) 366-2053; TDD
(800) 877-8339 (TDD/FIRS); Email: sue.masselink@fta.dot.gov. Detailed
information about efforts funded through JARC and other federal
programs is also available in the funding guide, "Opportunities
for Federal Funding and Promising Practices," (2002, June).Easter
Seals Project Action (ESPA) See the Building Mobility Partnerships
for People with Disabilities Web site at http://projectaction.easterseals.com.
(ESPA is funded by the FTA. Its mission is to encourage and facilitate
cooperation between the disability and transportation communities
with the goal of achieving universal access through transportation
for people with disabilities nationwide. ESPA provides technical
assistance to transit providers that are implementing ADA and
oversees innovative demonstration projects in transportation for
people with disabilities).
99 JARC funding for Allegan County was $150,000
in FY 1999 and $150,000 in FY 2000.
100 JARC Funding for the Guaranteed Ride Program
(GRP) was $499,000 for FY 1999, $500,000 for FY 2000, $498,900
for FY 2001, and $500,000 for FY 2002.
101 For more information, see http://www.outreach1.org/p_home/paratran.htm.
102 In FY 2000, the Rhode Island Public Transit
Authority (RIPTA) applied $100,000 of its total JARC funds to
the Flex Service program. Overall JARC funding to RIPTA from the
FTA was $1,000,000 for FY 1999; $500,000 for FY 2000; $997,800
for FY 2001; and $2,000,000 for FY 2002.
103 Transportation Advocacy Project (Pittsburgh,
PA). (2001, Winter). "Accessible Taxicabs Part 1: A Look at Accessible
Taxi Service Across the Country." ACT(Advocate for Consumer Transportation)
Newsletter,pp. 7-10. Retrieved on June 16, 2004, from http://www.ridesforallpa.com/Accessible%20Taxicabs%20(11-16-00).htm.
104 Medallions essentially are a license sold by
many cities and municipalities allowing an individual or company
to operate a taxicab in certain area. One mechanism cities use
to increase the number of accessible taxis is to increase the
number of new "medallions," or licenses, for sale. Medallions
for accessible vehicles are priced below sedan medallions as a
purchase incentive.
105 "Millage" is a tax rate on property, expressed
in mills per dollar of value of the property.
106 U.S. Department of Justice Web site at http://www.usdoj.gov.
107 U.S. Department of Justice Disability Rights
Section at http://www.usdoj.gov/crt/drs/drshome.htm.
108 For more information, see the Web site for Project
Civic Access at http://www.usdoj.gov/crt/ada/civicac.htm.
109 U.S. Department of Justice, Civil Rights Division,
Disability Rights Section. "The ADA and City Governments: Common
Problems." Retrieved on October 6, 2004, from http://www.usdoj.gov/crt/ada/comprob.htm;
see also U.S. Department of Justice, Civil Rights Division, Disability
Rights Section. (2000, March). "Americans with Disabilities Act:
ADA Guide for Small Towns, and ADA Stories--Four Communities Improve
Civic Access." Retrieved on October 6, 2004, from http://ada.gov/smtown.htm.
These and other materials can be accessed at http://ada.gov/publicat.htm.
110 See the Americans with Disabilities Act (ADA)
Web site at http://www.ada.gov for more information.
111 For more information, go to http://www.cambridgema.gov/~CDD/econdev/capital/fip.html.
112 For example, Disabled Access Tax Credit (Title
26, Internal Revenue Code, Section 44).
113 The Access Board is an independent federal agency
that develops and maintains accessibility requirements for the
built environment, provides technical assistance and training
on these requirements, and enforces accessibility standards for
federally funded facilities. For more information visit http://www.access-board.gov.
In July, 2004, the Access Board released updated accessibility
guidelines for facilities covered by ADA to coincide with the
14th anniversary of ADA' s enactment into law.
114 Personal communication with Dennis Pratt, June
14, 2004.
115 Kansas City has 5,900 "lane miles," that is,
the number of miles of roadway including all traffic lanes.
116 RPM Transportation Consultants, LLP. (2003,
March). Final Report: Nashville-Davidson County Strategic Plan
For Sidewalks & Bikeways. Nashville, TN: The Metropolitan
Government of Nashville and Davidson County, Tennessee. Retrieved
from http://www.nashville.gov/mpc/sidewalks/finalplan_march03.htm.
117 The direct link is http://pw.nashville.gov/WEBPROD/InteractiveMap.asp.
118 The public right-of-way is the term used to
describe all publicly owned land that is used to ensure the ease
of public and commercial transportation, including roads, sidewalks,
bicycle paths, and freight passages. Public rights-of-way also
accommodate elements that facilitate these activities, including
traffic signals, signs, streetlights, and, in some cases, public
and private utilities. For more information, see Public Rights-of-Way
Access Advisory Committee.(2001, January) "Building a True Community:
Final Report Public Rights-of-Way Access Advisory Committee."
Washington, DC: The Access Board. Retrieved from http://www.access-board.gov/prowac/commrept.
119 Personal communication with Renee Johnson, June
24, 2004.
120 Under Title I of the Rehabilitation
Act of 1973, states receive federal grants to operate comprehensive
vocational rehabilitation (VR) programs. The funds are awarded
to designated VR agencies within each state. Eligibility for VR
services requires that an individual have a physical or mental
impairment, which constitutes or results in a substantial impediment
to employment, and be able to benefit from VR services to achieve
an employment outcome. A second criterion for eligibility is that
individuals require VR services to prepare for, secure, retain,
or regain employment. People who receive Supplemental Security
Income (SSI) and/or Social Security Disability Insurance (SSDI)
are presumed eligible for VR services unless there is clear evidence
that they are too disabled to benefit. Priority is given to individuals
with the most significant disabilities over those with less significant
disabilities. VR agencies cover a wide variety of services such
as vocational training, transportation, interpreters, school-to-work
transition, personal assistance services, rehabilitation technology
services, supported employment services, and job placement services.
For more information, see the Web site of the U.S. Department
of Education, Office of Special Education and Rehabilitative Services
at http://www.ed.gov/about/offices/list/osers/rsa/faq.html.
121 For more information about Ticket to Work (TTW),
see page 85 in this chapter.
122 To meet Social Security Administration confidentiality
requirements, only first names are used in this introduction.
123 Alpha One Enterprises. (2003, Fall). "Tickets
(to job services) Are Coming," One in Five, 2(4):1, 4. Portland,
ME. Retrieved from http://www.alphaonenow.org.
124 SSA, Equal Employment Opportunity Commission
(EEOC), & U.S. Department of Justice, Civil Rights Division.
(2002, October). "Americans with Disabilities Act: A Guide for
People with Disabilities Seeking Employment." Retrieved at http://www.usdoj.gov/crt/ada/workta.pdf.
125 EEOC. (1997, January 15). "The ADA: Questions
and Answers." Retrieved on July 2, 2004, from http://www.eeoc.gov/facts/adaqa1.html.
126 Ibid.
127 For more information, see EEOC. (2004, March
8). "Americans with Disabilities Act of 1990 (ADA) Charges." Retrieved
on July 2, 2004, from http://www.eeoc.gov/stats/ada.html.
128 SSA, EEOC, & U.S. Department of Justice,
Civil Rights Division, 2002.
129 EEOC, 1997.
130 Dixon, K.A., Kruse, D., & Van Horn, C.E.
(2003, March). "Restricted Access: A Survey of Employers About
People With Disabilities and Lowering Barriers to Work." Americans'
Attitudes About Work, Employers and Government. Work Trends. New
Brunswick, NJ: John J. Heldrich Center for Workforce Development,
Rutgers, The State University of New Jersey. Retrieved from http://www.heldrich.rutgers.edu.
131 Ibid.
132 Ibid.
133 For example, the 2000 N.O.D./Harris Survey of
Americans with Disabilities found that, among people with disabilities
who are able to work, 56 percent were working in 2000, an increase
from 46 percent in 1986. Harris Interactive, Inc. (2000b). 2000
N.O.D./Harris Survey of Americans with Disabilities.Study No.
12384. New York: Harris Interactive, Inc.
134 N.O.D., 2004a.
135 Ibid.
136 N.O.D. (2004b). "Detailed Results from the 2004
N.O.D./Harris Survey of Americans with Disabilities." Washington,
DC: National Organization on Disability. Retrieved on August 25,
2004, from http://www.nod.org/pdffiles/harris2004/harris2004_data.pdf.
137 U.S. Department of Labor. (2001, July). "Statistics
About People with Disabilities and Employment." Retrieved from
http://www.dol.gov/odep/pubs/ek01/stats.htm.
138 EEOC. (1994, January). "Facts About Disability-Related
Tax Provisions." Retrieved from http://www.eeoc.gov/facts/fs-disab.html.
139 "Eligible small businesses" are those with $1
million or less in gross receipts for the preceding tax year,
or 30 or fewer full-time employees during the preceding tax year.
140 White House Domestic Policy Council. (2004,
March). "The President's New Freedom Initiative for People with
Disabilities: The 2004 Progress Report, Executive Summary." Washington,
DC: White House Domestic Policy Council. Retrieved on September
20, 2004, from http://www.whitehouse.gov/infocus/newfreedom/newfreedom-report-2004.pdf.
141 EEOC. 2003. "New Freedom Initiative." Retrieved
on September 20, 2004, from http://www.eeoc.gov/initiatives/nfi/index.html.
142 An interim report will be available in fall
2004.
143 For more information, see http://www.yourtickettowork.com.
144 For state information about Employment Networks,
see http://www.ssa.gov/work/Ticket/ticket_info.html; for state
information about State Vocational Rehabilitation Agencies, see
http://www.ssa.gov/work/ServiceProviders/StateTicketTracker.html.
145 SSA. (2001, April). The Ticket to Work and Self-Sufficiency
Program.SSA Publication No. 05-10061, ICN 463262. Retrieved from
http://www.ssa.gov/pubs/10061.html.
146 For more information on the administration of
the TTW program, see http://www.yourtickettowork.com.
147 For more information about CAP Employment, see
http://www.tricare.osd.mil/cap/programs/programs_employment.cfm.
148 For more information about CAP Program Accessibility,
see http://www.tricare.osd.mil/cap/programs/programs_access.cfm.
149 For more information about CAP System Accessibility,
see http://www.tricare.osd.mil/cap/programs/programs_system.cfm.
150 Personal Communication with Commissioner David
Hanson and Deputy Commissioner Gil Selders, July 26, 2004.
151 Chicago's Navy Pier is, "a multimillion dollar
convention, cultural and recreation center and Chicago's most
visited attraction." For more information, see http://www.navypier.com.
152 National Disability Mentoring Day, a partnership
activity between the U.S. Department of Labor's Office of Disability
Employment Policy (ODEP) and the American Association of People
with Disabilities, is a national event organized by local communities.
It is designed to enhance internship and employment opportunities
for people with disabilities by bringing them together with employers
for a day of job shadowing and other hands-on career exploration
activities. For people with disabilities, it is an opportunity
to see the connections between school and work, evaluate personal
goals, target career skills for improvement, explore possible
career paths, and develop lasting mentor relationships. For employers,
it is an opportunity to recruit interns, tap a pool of potential
future employees, and learn more about the experience of disability.
For more information, see www.dmd-aapd.org.
153 Personal Communication with Gil Selders, July
2004.
154 Mayor's Office for People with Disabilities
(MOPD). (2003, October 17). "National Disability Mentoring Day
Matches Today's Workforce Visionaries with Tomorrow's Leaders."
Access Notes.Retrieved from http://egov.cityofchicago.org/webportal/COCWebPortal/COC_EDITORIAL/An101703.pdf.
155 For more information, see http://www.usbln.com.
156 U.S. Business Leadership Network (USBLN). 2003
USBLN Exceptional Leadership Awards. Retrieved on June 27, 2003,
from www.usbln.com/bestprac/2003awards.htm.
157 Sponsors include Pepsi Cola Bottling Company
of Salisbury; Lower Shore Enterprises, Inc.; Perdue Farms Incorporated;
Macron, Inc.; Peninsula Regional Medical Center; Beacon Technologies,
Inc.; Avery Hall Insurance Group; SunTrust; Black & Decker;
Capitol Securities Management, Inc.; Helvoet Pharma; Harvard Custom
Manufacturing; Upper Shore Workforce Investment Board; W.L. Gore
& Associates.
158 For more about One-Stop Centers, see the description
of Career Alliance, Inc. (Flint, MI).
159 USBLN.
160 QUEST: Quality, Understanding, Excellence, Success,
Training.
161 Personal Communication, Steven Serra, director,
Recruitment and Examination Division, Office of Personnel Services
and Benefits, MD Department of Budget and Management, August 31,
2004.
162 Ibid.
163 One-Stop Career Centers were established under
the Workforce Investment Act (WIA) of 1998. WIA reforms federal
job training programs and creates a new, comprehensive workforce
investment system that is customer-focused, helps workers access
the tools they need to manage their careers, and helps U.S. companies
find skilled workers. One-Stop Career Centers are designed to
provide a full range of assistance to jobseekers under one roof.
These Centers exist in every state and offer training referrals,
career counseling, job listings, and similar employment-related
services. Customers can visit a center in person or connect to
the center's information through personal computer or kiosk remote
access. For more information about One-Stop Career Centers and
where they are located in each state and local areas see the U.S.
Department of Labor Web site www.dol.gov/dol/topic/training/onestop.htm.
164 U.S. Department of Labor, Office of Disability
Employment Policy. Customized Employment Q and A. Retrieved on
September 9, 2004, from http://www.dol.gov/odep/tech/employ.htm.
165 This process of course will be slightly different
for people who want to be self-employed. Continuing education
or training can be part of the individual work plan.
166 Eligible applicants may be (1) recipients of
SSI or SSDI; (2) participants in a day program or participants
in facility-based or community employment and earning less than
minimum wage; (3) participants in segregated employment and choosing
to move to integrated competitive employment; (4) awaiting employment
services and supports following a move from a residential facility,
or as part of a plan to move into a community; (5) transitioning
from, or preparing to transition from, secondary school under
a transition plan under part B of the Individuals with Disabilities
Education Act who, without access to customized employment strategies,
would likely be referred to one of the environments listed above;
and (6) veterans and certain of their spouses that qualify under
the Jobs for Veterans Act.
167 Personal communication, July 9, 2004.
168 Bill's story was chronicled in two CBS television
movies: Emmy-award winning "Bill" (1981) and the sequel "Bill:
On His Own" (1983). A documentary by Lane Wyrick entitled "Bill
Sackter: A Special Spirit" is forthcoming in December 2004. Walz's
book, Unlikely Celebrity: Bill Sackter's Triumph over Disability,was
published in 1998 by Southern Illinois University Press.
169 For more information, email her at gretchen.berland@yale.edu.
170 Iezzoni, L.I. (2002). Using Administrative Data
to Study Persons with Disabilities. The Milbank Quarterly,80(2):
347–79.
171 Singer, S., Juang, A., Sage, B., Bergthold,
L., & Osterhoff, R. "Regulating Medical Necessity Decision
Making by Health Maintenance Organizations." Retrieved on September
9, 2004, from http://www.hcfo.net/pdf/singer.pdf.
172 Singer, S., Bergthold. C., Vorhaus, S., Olson,
S., Mutchinick, I., Goh, Y.Y., Zimmerman, S., & Enthover,
A. (1999, August). "Decreasing Variation in Medical Necessity
Decision-Making: Final Report to the California HealthCare Foundation."
Stanford, CA: Center for Health Policy, Stanford University. Retrieved
on September 9, 2004, from http://www.chcf.org/documents/policy/medicalnec.pdf.
173 O'Day, B., & Corcoran, P.J. (1994). Assistive
Technology: Problems and Policy Alternatives. Archives of Physical
Medicine and Rehabilitation,75:1065–9.
174 Hanson, Neuman, & Voris, 2003.
175 This is exemplified in Batavia, A.I. (1991).
Of wheelchairs and managed care. Health Affairs, 18(6):177–82.
176 Scheer, J., Kroll, T., & Neri, M. (2001,
October 22). "Consequences of Delayed or Denied Access to Health
Care Services: Perceptions of Individuals with Disabilities."
Paper presented at the 129th Annual Meeting of the American Public
Health Association, Atlanta, GA. Abstract retrieved on September
9, 2004, from http://apha.confex.com/apha/129am/techprogram/paper_30183.htm.
177 Hanson, Neuman, & Voris, 2003.
178 Patrick, D.L. (1997). Rethinking Prevention
for People with Disabilities Part I: A Conceptual Model for Promoting
Health. American Journal of Health Promotion, 11(4): 257–60.
Retrieved on July, 28, 2004, from http://depts.washington.edu/cdpr/docs/AJPH1.pdf.
179 U.S. Department of Health and Human Services
(HHS). (1991). Healthy People 2000: National Health Promotion
and Disease Prevention Objectives.Pub. No. (PHS) 91-50213. Washington,
DC: HHS, Public Health Service (PHS), Office of Disease Prevention
and Health Promotion (ODPHP), pp. 39–42.
180 HHS. 2004. "Healthy People 2010 Leading Health
Indicators." Retrieved from http://www.healthypeople.gov/LHI.
181 Chapter 6 of Healthy People 2010lists 13 objectives
covering a range of health goals. The first goal is data and surveillance
and asks for standard questions to define disability among federal
data sets. Here disability is viewed as another demographic variable
that provides a method and rationale for examining differences
in health and health care. See U.S. Department of Health and Human
Services. (2000, November). Healthy People 2010, 2nd ed. With
Understanding and Improving Health and Objectives for Improving
Health. 2 vols.Washington, DC: U.S. Government Printing Office.
182 DeJong, G., Palsbo, S.E., Beatty, P.W., Jones,
G.C, Kroll, T, & Neri, M.T. (2002). "The Organization and
Financing of Health Services for Persons with Disabilities." The
Milbank Quarterly, 80(2):261–301.
183 Highsmith, N., & Somers, S. (2003, September).
"Adults with Disabilities in Medi-Cal Managed Care: Lessons from
Other States." Oakland, CA: Med-Cal Policy Institute, California
Health Care Foundation. Retrieved on June 9, 2004, from http://www.chcf.org/documents/mcpi/access/MediCalDisabilitiesLessons.pdf
or http://www.chcs.org.
184 The Supreme Court's 1999 Olmstead v. L. C. decision
requires states to provide services "in the most integrated setting
appropriate to the needs of qualified individuals with disabilities."
Centers for Medicare & Medicaid Services. "Americans with
Disabilities Act/Olmstead Decision" retrieved from http://www.cms.hhs.gov/olmstead/default.asp.
185 The term "supportive housing" refers to a range
of residential approaches designed to meet the needs of vulnerable
populations, such as homeless persons or low-income frail elders
who need assistance with long-term care, but who do not need intensive
nursing services. Other terms to describe this approach include
"service-enriched," service-enhanced," "housing with services,"
or "special needs housing." See Sheehan, N.W.A., & Oakes C.E.
(2004). Public Policy Initiatives Addressing Supportive Housing:
The Experience of Connecticut.Paper prepared for Information Brokering
for Long-Term Care, a project of the Center for Home Care Policy
& Research, Visiting Nurse Service of New York; funded by
The Robert Wood Johnson Foundation.
186 NORCs are made up of dwellings that were not
designated for older persons but where seniors have lived for
most of their adult lives ("aging in place"). NORCs can be public
housing, private apartment buildings, or any neighborhood with
a high concentration of older persons who have aged in place.
187 O'Hara, A., & Day, S. (2001, December).
"Olmstead and Supportive Housing: A Vision for the Future (Consumer
Action Series)." Princeton, NJ: Center for Health Care Strategies,
Inc. Retrieved on August 13, 2004, from http://www.chcs.org/usr_doc/supportive_housing.pdf.
188 The "Independent Living Movement" was born out
of both civil rights and consumer activism movements of the 1960s.
The goal of this movement is for people with disabilities to control
their own lives, become self-empowered and socially and economically
productive, achieve self-direction, and have the opportunity to
live in permanent, independent, affordable, and accessible housing.
See "Independent Living" on The Center for an Accessible Society
Web site. Retrieved on August 27, 2004, from http://www.accessiblesociety.com/;
also see DeJong, G. (1979). "Independent Living: From Social Movement
to Analytic Paradigm." The Archives of Physical Medicine and Rehabilitation,60:435–446.
Retrieved on August 30, 2004, from http://www.impactcil.org/phil_history/dejong.htm.
189 Independent Living Centers (ILCs) are typically
nonresidential, private, nonprofit, consumer-controlled, community-based
organizations providing services and advocacy by and for persons
with all types of disabilities. For more information and a list
of ILCs in various states across the states, see the Independent
Living USA Web site. Retrieved on August 30, 2004, from http://www.ilusa.com/links/ilcenters.htm.
190 Association of University Centers on Disabilities.
(2003, August 21). "New Freedom Initiative: Medicaid Demonstrations
Act of 2003: Summary." Retrieved on August 18, 2004, from http://www.aucd.org/Medicaid/NFI_legislation_summary.htm.
191 "Money Follows the Individual" Rebalancing Initiative.
Retrieved August 30, 2004, from http://www.cms.hhs.gov/newfreedom/0303mfir.pdf.
192 For additional information and examples of state
strategies, see Crisp, S., Eiken, S., Gerst, K., & Justice,
D. Promising Practices: (2003, September 29). "Money Follows the
Person and Balancing Long-Term Care Systems: State Examples."
Washington, DC: prepared for U.S. Department of Health and Human
Services (DHHS), Center for Medicare and Medicaid Services (CMS)
by Medstat Research Policy Division. Retrieved on September 7,
2004, from http://www.cms.hhs.gov/promisingpractices/mfp92903.pdf.
193 Phillips, B., Mahoney, K., Simon-Rusinowitz,
L., Schore, J., Barrett, S., Ditto, W., Reimers, T., & Doty,
P. (2003, June). "Lessons from the Implementation of Cash and
Counseling in Arkansas, Florida, and New Jersey." Princeton, NJ:
Mathematica Policy Research, Inc. Retrieved on August, 26, 2004,
from http://aspe.hhs.gov/daltcp/reports/cclessones.htm.
194 The defining characteristic of a consumer-directed
model of service delivery is that it allows people with disabilities
considerable choice and control over how support services are
provided and by whom. Clients may employ anyone they choose, including
family members. See Doty, P., Benjamin, A.E., Matthias, R.E.,
& Franke, T.M. In-Home Supportive Services for the Elderly
and Disabled: A Comparison of Client-Directed and Professional
Management Models of Service Delivery(Non-Technical Summary Report).Washington,
DC: U.S. Department of Health and Human Services (HHS), Office
of the Assistant Secretary for Planning and Evaluation (ASPE),
Office of Disability, Aging, and Long-Term Care Policy (DALTCP).
Retrieved on August 12, 2004, from http://aspe.hhs.gov/daltcp/reports/ihss.htm.
195 Mitchell, G.R., January 30, 2003. "Cash &
Counseling: Consumer Choices, Family Reimbursements." Retrieved
from the Empowering Caregivers Web site on August 12, 2004, from
http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=77.
196 Phillips et al., 2003, Retrieved on August 26,
2004, from http://aspe.hhs.gov/daltcp/reports/cclessones.htm.
197 Mahoney, K.J., Simone, K., & Simon-Rusinowitz,
L. (2003, Fall). "Early Lessons from the Cash and Counseling Demonstration
and Evaluation." Consumer Direction in Long-Term Care, pp. 41–46.
198 Dale, S., Brown, R., Phillips B, Schore, J.,
& Carlson, B.L. (2003, November 19). "The Effects of Cash
and Counseling on Personal Care Services and Medicaid Costs in
Arkansas." Health Affairs Web Exclusives(supplement), pp.W3-566
to W3-575. Retrieved from http://content.healthaffairs.org/cgi/reprint/hlthaff.w3.566v1.pdf.
199 Boston College. New National Project Aims to
Improve Services, Quality of Life for Medicaid Elderly and Disabled.Retrieved
on August 11, 2004, from http://www.bc.edu/bc_org/rvp/pubaf/04/medicaid.html;
also see www.cashandcounseling.org.
200 Palsbo, S., Beatty, P., Parker, P., & Duff,
C. (2004, January). "Minnesota Disability Health Options: Expanding
Coverage for Adults with Physical Disabilities." Princeton, NJ:
Center for Health Care Strategies, Inc. (CHCS). Retrieved on June
7, 2004, from http://www.chcs.org/publications3960/publications_show.htm?doc_id=208392;
also see Minnesota Department of Human Services. "Minnesota Disability
Health Options." Retrieved on August 3, 2004, from http://www.dhs.state.mn.us/main/groups/healthcare/documents/pub/DHS_id_006272.hcsp.
201 Medical Assistance is the name of Minnesota's
Medicaid Program. Minnesota offers several health care programs
to help people with disabilities pay for health care costs. For
information, see the Department of Human Services Web site at
http://www.dhs.state.mn.us/main/groups/healthcare/documents/pub/DHS_id_006249.hcsp.
202 Wisconsin Department of Health and Family Services.
(2001, April). "The Wisconsin Partnership Program: An Integrated
Care Model for People who are Elderly and for People with Physical
Disabilities (Working Paper)." Retrieved on June 28, 2004, from
http://www.chcs.org/usr_doc/WisconsinPartnership.pdf; also see
Wisconsin Department of Health and Family Services. "Wisconsin
Partnership Program." Retrieved on August 2, 2004, from http://www.dhfs.state.wi.us/WIpartnership.
203 Under a Medicaid waiver the Federal Government
allows or grants states permission to waive certain federal requirements
to operate a specific kind of program. They often are used to
authorize managed care, or alternative delivery or reimbursement
systems. In general, federal law allows states to enact three
types of Medicaid waivers: Program Waivers (1915 (b), 1915 (c),
1915 (b)/1915 (c) concurrent waivers); Research and Demonstration
Waivers (115 waivers-general); and Health Insurance Flexibility
and Accountability (1115 Demonstration Initiative). For more information
about waivers, see Center for Medicare and Medicaid Services,
Medicaid Waivers and Demonstrations, available at http://www.cms.hhs.gov/medicaid/waiver1.asp.
204 The Wisconsin Partnership Program distinguishes
"multidisciplinary" from "interdisciplinary." Multidisciplinary
means bringing several disciplines to bear on an issue or problem,
but the experts from each discipline do not necessarily collaborate.
Interdisciplinary means experts from several disciplines interact
to arrive at a course of action in response to an issue or problem.
205 Elder Care of Wisconsin, Madison; Community
Living Alliance, Madison; Community Care for the Elderly, Milwaukee;
and Community Health Partnership in Eau Claire.
206Tillery, 2004. Also see Arkansas Department
of Human Services, Division of Aging and Adult Services, available
at http://www.state.ar.us/dhs/aging/pubs.html.
207 Coming Home: Affordable Assisted Living (Coming
Home) is a 13-year, $14.3 million national program created in
1992 by the Robert Wood Johnson Foundation (RWJF) and NCB Development
Corporation to develop affordable models of assisted living, with
a focus on smaller and rural communities and low-income seniors.
See the National Program Report. Retrieved from http://www.rwjf.org/reports/npreports/cominghomee.htm.
208 NCB Development Corporation, a national nonprofit
organization that fosters community development by providing technical
assistance and predevelopment financing to nonprofit community-based
organizations nationwide, is affiliated with National Cooperative
Bank. For more information, on see http://www.ncbdc.org.
209 For a list of Coming Home Assisted Living demonstration
projects in other states, see http://www.rwjf.org/programs/npoDetail.jsp?id=CRE.
210 See endnote 203 for information about waivers.
211 Arkansas State Legislature. (2001, April 30).
"The Arkansas Assisted Living Act." Act 1230 of 2001. Retrieved
on August 17, 2004, from http://www.arkleg.state.ar.us/ftproot/acts/2001/htm/act1230.pdf.
212 Assisted living is a concept that
combines apartment living with supportive personal and health
care services to allow older people to maintain their independence
and dignity while receiving a high level of care and support.
See U.S. Department of Housing and Urban Development. (2003, April
2). "Assisted-Living Facility First for Arkansas." Retrieved on
August 18, 2004, from http://www.hud.gov/local/ar/library/archives/goodstories/2003-04-02.cfm.
213 NCB Development Corporation. (2002, December
9). "Arkansas Opens One of The Nation's First True Affordable
Assisted Living Residences (Press Release)." Retrieved on August
17, 2004, from http://www.ncbdc.org/ncbdc/contents.nsf/index.htm?OpenPage&link=/ncbdc/contents.nsf/docna
me/aalindustrynewsdoc.htm.
214 NCB Development Corporation. (2003,
May 12). "Two Arkansas Coming Home Programs Awarded Low-Income
Housing Tax Credits (Press Release)." Retrieved on August 17,
2004, from http://www.ncbdc.org/ncbdc/contents.nsf/index.htm?OpenPage&link=/ncbdc/contents.nsf/docna
me/aalindustrynewsdoc.htm.
215 Sheehan & Oakes, 2004.
216 Ibid.
217 Ibid.
218 Ibid.
219 Ibid.
220 For a detailed description of the program, see
Vladeck, F. (2004). A Good Place to Grow Old: New York's Model
for NORC Supportive Service Programs.New York, NY: United Hospital
Fund. In New York City, NORC-SSPs generally are located in housing
complexes where 45 percent of units have heads of household who
are 60 years old or older, with a minimum of 250 such households
or a minimum count of 500 households that fit that description.
221 Social work services are provided by trained
social workers and may include such things as information and
referral, assistance with benefits and entitlements, care management
and service coordination, and education for caregivers, among
others.
222 These include help with management of chronic
conditions as well as acute situations, help in navigating the
health care system, blood pressure monitoring, flu shots, and
a number of other health promotion, prevention, and wellness activities.
The goal is to help older residents maintain their independence
and continue living at home.
223 For more information about these organizations
see Chapter 3.
224 For more information about Toastmasters International,
see http://www.toastmasters.org.
225 Harris Interactive, Inc., 2000b, p. 5.
226 Ibid.
227 Ibid., p. 8.
228 Ibid., p. 11.
229 See City of Phoenix, "Adaptive Recreation Services,"
at http://www.phoenix.gov/PRL/adrecsvc.html.
230 River Rampage was funded by a grant from the
U.S. Department of Education from 1994 to 1996.
231 City of Phoenix. 2004. "Adaptive Recreation
Services, River Rampage." Retrieved on August 10, 2004, from http://www.phoenix.gov/PRL/adrecsvc.html#RIVER.
232 Personal Communication, Linda Tuck, August 11,
2004.
233 Personal Communication, Linda Tuck, August 11,
2004.
234 City of Phoenix, 2004.
235 Personal Communication, Betty Siegel, August
2004.
236 The Experiential Education Initiative (EEI)
is an outgrowth of the recommendation to increase opportunities
for people with disabilities to pursue careers in the arts through
internships from the National Forum on Careers in the Arts held
in June 1998 at The John F. Kennedy Center for the Performing
Arts and sponsored by the National Endowment for the Arts, U.S.
Department of Education, U.S. Department of Health and Human Services,
the Social Security Administration, and The John F. Kennedy Center
for the Performing Arts.
237 The Connors Foundation is a private family foundation.
238 EEI is targeted to people who don't go through
the traditional pathways (e.g., don't go to college), but go through
"back doors" to pursue a career in the arts. EEI interns are referred
and prescreened by partner agencies/service providers--for example,
Arc of Montgomery County, Arc of D.C., SEEC Montgomery County,
Mount Vernon Lee Enterprises (MLVE).
239 The Kennedy Center. (2002, Fall). "Removing
Barriers: Careers in the Arts for Persons with Disabilities."
National Education Review: A Biannual Report on the Education
Programs of the John F. Kennedy Center for the Performing Arts,Vol.
IV.
240 For more information on AXIS Dance Company,
see http://www.axisdance.org.
241 Previously, choreography was done in-house.
242 Among AXIS' most notable performances are the
2002 Olympic Arts Festival in Salt Lake City, Utah, and a residency
in Novosibirsk, Siberia, in 1995. AXIS cocurated and coplanned
the International Festival of Wheelchair Dance in 1997 with Dance
Umbrella, a nonprofit dance company. In November 2004, AXIS performed
at Meredith Monk's 40th Anniversary Celebration in New York City.
243 AXIS received numerous Isadora Duncan Awards
during 2000 and 2001, was honored with a "Goldie for Dance" from
the San Francisco Bay Guardian's Outstanding Local Discovery Award
in 2000, and was awarded by Mayor Jerry Brown with a "Key to Creativity"
in 2002 in honor of their artistic achievements throughout the
previous 15 years.
244 The company will have spent 14 weeks on tour
by the end of 2004, and has already scheduled 8 weeks of touring
for 2005.
245 Dance disciplines include Contact Improvisation,
Laban-based work, contemporary dance techniques, somatics and
body work, physical theater, Authentic Movement, and choreography
and composition.
246 AXIS has received grants from the National Endowment
for the Arts, Rockefeller Foundation's MAP Fund, William and Flora
Hewlett Foundation, Creative Work Fund, Wallace Alexander Gerbode
Foundation, Walter and Elise Haas Fund, San Francisco Foundation,
Christopher Reeve Paralysis Foundation, and Zellerbach Family
Fund. Other awards include Performing Arts Fellowships from the
Barkley Fund, Choreographer's Fellowships from the City of Oakland
and the Bay Area Fund for Dance, California Arts Council Exemplary
Arts grant, and two nominations for a Cal Arts/Alpert Award in
the Arts, which recognizes mid-career artists creating work of
value.
247 For more information on FaithWays, see the National
Alliance for the Mentally Ill Web site at http://mn.nami.org/faithways.html.
248 For more information on eSlateTM in Harris County,
see http://www.harrisvotes.org/index2.htm (retrieved on September
16, 2004).
249 The task force members are listed at http://www.harrisvotes.org/non_frames/taskforce-geninfo.htm
(retrieved on September 16, 2004).
250 The eSlateTM units are manufactured by K*TEC
Electronics under a contract manufacturing agreement with Hart
InterCivic, Inc.
251 The voter outreach and education campaign was
designed by Hart InterCivic, Inc. and implemented by the Hill
and Knowlton pubic relations firm.
252 "Early Voting" was adopted in Texas in the mid-1990s.
Harris County conducts early voting 14–17 days before Election
Day and allows registered voters to vote at any one of 30 locations
throughout Harris County.
253 U.S. Bureau of the Census, Census 2000. All
percentages are rounded.
254 The information contained in this description
of the San Mateo County strategic plan was gleaned from the "Strategic
Plan for Services for Older Adults and Adults with Disabilities
2000" and conversations with Shea Muller, a Planner with the San
Mateo County Aging and Adult Services Division. For more information,
contact Shea Muller at 650-573-3527.
255 Nolden, S., Climaco, C., Bonjorni,
J., & Rich, K. (2002). "Updating the Low-Income Housing Tax
Credit (LIHTC) Database: Projects Placed in Service through 2000."
Prepared for: U.S. Department of Housing and Urban Development,
Office of Policy Development and Research. Retrieved on October
4, 2004, from http://www.huduser.org/Datasets/LIHTC/report952k.pdf. |
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