Employment
The company accommodates me so I can feed my
two children and pay my taxes.
David Vice, Mechanic
Indiana
1995
(NCD ADA Report, p. 85)
Before ADA, I could go to a job interview and
the employer could say, "We won't hire you because you're disabled,"
and I had no legal recourse.
Tim Harrington
Ohio
1995
(NCD ADA Report, p. 13)
Together with exciting new technology, improved
rehabilitation techniques, better education and changing public
attitudes, real work for real wages is more than a dream; it can
be a reality.
Susan M. Daniels
Social Security Administration
1995
People with disabilities want to work. When people
with disabilities work, the economy benefits. When people with disabilities
work, our society is enriched. However, the overriding message sent
to people with disabilities through our public policies is that
they are not expected to work. Public policy most often creates
a path to premature retirement for people with disabilities, not
one to rehabilitation and work. Over 95 percent of federal funds
spent on people with disabilities are targeted for supporting dependency.
Little is spent on supporting people in pursuing and maintaining
employment. Too often, health insurance is accessible for people
with disabilities only if they do not work. The national employment
policy agenda has never included people with disabilities.
Despite accomplishments in medical rehabilitation,
technology, education, and civil rights, it should not come as a
surprise that the employment rate among people with disabilities
has not increased in the last decade. For most people with disabilities,
the barriers to working remain significant and working is too often
an irrational choice. Entry-level minimum-wage jobs rarely pay enough
for an individual with significant disability-related needs to be
able to live on the income and meet those needs. Essential services,
such as personal assistance and assistive technology, are often
subsidized only through public health insurance, which is generally
available only to people who are not working. Private health insurance
often precludes coverage for preexisting conditions and offers minimal
coverage for mental health needs and long-term supports and services.
While there is a well-established and well-funded system to support
people with disabilities in dependency, there is relatively little
support for their efforts to be independent.
Employment Rate
People with disabilities remain significantly less
employed than they would like to be, and significantly less employed
than other Americans. Polls conducted by Lou Harris and Associates
in 1986 and 1994 reveal that two-thirds of working-age people with
disabilities are not working. An overwhelming majority who are not
working (66 percent in 1986 and 79 percent in 1994) indicate that
they want to work. Data from the Current Population Survey of 1995
confirm that the employment rate of people with disabilities has
remained consistently low over the last decade. In 1995, only 28
percent of the 16.8 million working-age noninstitutionalized Americans
with work disabilities were employed, while 75 percent of working-age
Americans without disabilities were employed.
Women and minorities with disabilities face dual discrimination
and employment challenges. Their employment rates have consistently
been lower than those for men and Whites with disabilities. African
Americans represent a significantly larger proportion of working-age
people with disabilities than do Whites or Hispanics, and as a group
they are more severely disabled. While the full-time employment
rate for Whites with disabilities was 15.9 percent in 1992, it was
7.2 percent for African Americans and 8.2 percent for Hispanic Americans
(Braddock and Bachelder 1994). The earnings of women with disabilities
with full-time jobs were only 65 percent of the earnings of men
with disabilities who were employed full-time (Bowe 1992). Women
with disabilities are more frequently employed part-time, rather
than full-time, than men with disabilities. Integrated employment
opportunities in sheltered employment are less available to women
than men (Blanck 1991), as are promotion opportunities (Blass and
Elliott 1993).
Employment Statistics
The Bureau of Labor Statistics in the Department of
Labor (DOL) and the Census Bureau in the Department of Commerce
regularly collect, analyze and disseminate employment data aggregated
on the basis of gender, race, ethnicity, age and geography. No such
data are collected or reported for people with disabilities. The
most frequently cited data about the employment of people with disabilities
are gathered from the March supplement to the Current Population
Survey. These data are collected only once a year, whereas for other
groups they are collected and reported monthly. Furthermore, the
question used to determine the employment status of people with
disabilities was not designed for the purpose of tracking employment.
Public Policy: Too Often a Path to Premature Retirement
The vast majority of adults with disabilities become
disabled as adults, many while they are working. The response to
this adult onset of disability generally comes through the state
workers' compensation system or the private disability insurance
system (car insurance, short-term and long-term disability insurance).
Too often these systems emphasize compensation for the acquisition
of a disability and retirement from the workforce. Retirement is
sometimes inadvertently promoted by emphasizing the extent of an
impairment and the residual dysfunction. There is rarely motivation
to assess the individual's functional capacity and productivity
with appropriate accommodations. There is little sustained long-term
focus on returning to work or retaining the individual at work.
As gatekeepers to most benefit-providing systems, medical doctors
focus on medical assessments and documentation of disability. Little
attention is given to long-term vocational assessments or accommodations
that would enable employment. By focusing on the disability rather
than the ability, our national disability policies and programs
leave many employment opportunities unrealized.
Throughout the years, national employment policies
and initiatives have often promoted full employment throughout the
nation and offered training, job placement, reeducation programs,
employment services, unemployment services, etc. People with disabilities
have never been routinely considered as a potential part of the
labor force and as part of large-scale training, education and employment
initiatives for the general workforce. Disability is poorly understood
and communicated in the nation's larger employment policy agenda.
The implicit assumption is that people with disabilities are not
expected to be part of the workforce.
Labor Market Trends
People with disabilities are disproportionately affected
by labor market trends. While the labor force participation of men
has declined steadily since the 1970s, the largest decline has been
among disabled men aged 55-64 (Yelin 1993). Women's labor force
participation has steadily increased since the 1970s; however, the
increase has been less for women with disabilities than for women
without disabilities (Yelin 1991). The level of full-time employment
for workers without disabilities has remained relatively constant
over the last several years, while it has decreased for workers
with disabilities. Part-time employment has increased for both disabled
and nondisabled workers, though it has increased more for workers
with disabilities (Yelin and Katz 1994).
Economic restructuring and the changing nature of
work provide both opportunities and challenges for people with disabilities.
The increasing use of telecommunication via fax machines and the
Internet has led to more liberal work-at-home policies by employers
and an increase in entrepreneurship and self-employment. Such developments
hold promise for people with disabilities who are skilled and educated.
They are appealing to people who find the rhythm of the traditional
9 to 5-work setting incompatible with their disability-related needs.
However, such trends may also reduce job opportunities for less
skilled workers (Lewin-VHI 1995).
Barriers and Disincentives to Work
The factors that contribute to the low employment
rate for people with disabilities are many. Access to private health
insurance is increasingly cited as the key obstacle to employment,
particularly in light of the increase in part-time work, which rarely
brings access to health insurance. With underwriting practices,
preexisting-condition exclusions and limits on benefits acting as
critical disincentives, many people with disabilities seek Social
Security benefits in order to gain access to public health insurance.
However, current discussions about revising Medicaid and Medicare
may result in closing this route of access to public health insurance.
As jobs become increasingly less secure, because of downsizing and
merging trends, people with disabilities may find the relative security
of benefits even more appealing.
Other barriers to work cited by people with disabilities
include loss of benefits; disincentives to work in benefit programs;
lack of access to personal assistance services; lack of access to
assistive technology; inadequate education, work experience and
vocational rehabilitation; inadequate transportation; inadequate
housing; negative attitudes; inaccessible transportation, housing
and work sites; discrimination; and lack of opportunities for career
advancement (Braddock and Bachelder 1994).
Vocational Rehabilitation and Other Federal Employment
Programs
The federal and state vocational rehabilitation program
has been the government's key response to the employment of people
with disabilities since 1920. Over the years smaller discretionary
programs, such as supported employment and projects with industry,
have been developed to further target employment for people with
disabilities. The 1992 Amendments to the Rehabilitation Act required
state vocational rehabilitation agencies to provide for the individual's
choice of services and service providers; to focus on careers, not
just entry-level jobs, and to presume that most individuals with
disabilities are employable. Because resources are not sufficient
to serve all who apply, priority is given to those with the most
severe disabilities. In addition, states develop an order-of-selection
priority, which determines who will be served in each state. With
approximately $2.3 billion in federal funds, targeted employment
services programs for working-age adults with disabilities serve
about 1 million individuals per year, placing about 200,000 per
year in employment. Despite their successes, targeted employment
programs for people with disabilities have never made a noticeable
impact on the employment rate nationwide.
Generic employment and training programs in the DOL
report that they serve thousands of people with disabilities every
year through the Job Training Partnership Act, the Employment Services
Office and veterans programs. Despite the fact that these programs
are covered by the Americans with Disabilities Act (ADA), many people
with disabilities report that they have difficulty accessing services
through generic programs. They report that the services they need
may not be available or accessible and that the programs do not
see it as their role to serve people with disabilities.
The 1994 Lou Harris poll of 1000 people with disabilities
reported that employed adults with disabilities were much more likely
to have found their jobs through personal contacts than through
structured services. Only 4 percent reported that special programs
for people with disabilities had assisted them in finding employment,
while 5 percent reported that generic employment services had assisted
them in finding a job.
Supported Employment
The concept of supported employment emerged in the
early 1980s as a response to dissatisfaction with the unemployment
of people with developmental disabilities or their segregation in
day activity programs and sheltered workshops with low or no wages.
As evidence emerged about the capabilities of people with significant
developmental disabilities to work and live successfully in the
community, people with disabilities, their advocates and progressive
policy makers developed a national initiative to promote jobs in
the community with individualized support. After a decade of investment
and implementation, over 110,000 people have had access to supported
employment, with an annual federal investment of over $40 million
(Mank in press). The majority of individuals with significant developmental
disabilities remain placed in segregated facility-based sheltered
workshops and adult day programs. Supported employment has often
become an "add-on" to these services. The extended supports are
not available to enable Social Security beneficiaries to use supported
employment as a route to leaving Social Security benefit rolls.
Efforts to change systems in states have produced only modest local
changes.
The Private Sector
Polls repeatedly indicate that employers support the
employment of people with disabilities and experience people with
disabilities as good employees. A 1995 poll of 300 chief executive
officers and human resource managers in Fortune 5000 companies found
that 73 percent of the top industries across the country are currently
hiring people with disabilities. Most reported that ADA has had
a positive impact on corporations; only 16 percent believed it has
had a negative effect (President's Committee on Employment of People
with Disabilities [PCEPD] 1995). Lou Harris and Associates surveyed
employers in 1986 and again in 1995 and found strong support for
ADA and the employment of people with disabilities. The employment
antidiscrimination provisions of ADA apply to 666,000 businesses
employing about 86 million people.
The percentage of companies reporting that they have
made accommodations in the workplace increased from 51 percent to
81 percent between 1986 and 1995 (Lou Harris and Associates 1995).
Furthermore, the costs of accommodations did not appear significant,
with about half of employers saying costs increased a little between
1986 and 1995 and 32 percent reporting no increase. The Job Accommodation
Network operated by PCEPD to assist employers in developing specific
work accommodations has consistently reported that the majority
of accommodations cost less than $500. One case study of Sears,
Roebuck and Co. (Blanck 1994a) found that 97 percent of accommodations
involved little or no cost.
Analysis of one national data set indicates that between
one-fourth and one-third of workers who become impaired on the job
are accommodated following onset of disability. Those who are accommodated
at work are more likely to stay employed than those who are not.
Most who continue to work after the onset of disability remain with
their current employers. (Burkhauser, Butler and Kim 1994; Daly
and Bound 1994).
Despite the positive attitudes of many employers and
the effectiveness of job accommodations, many companies are still
not hiring people with disabilities. Lou Harris and Associates (1986,
1995) found that the percentage of companies that had hired people
with disabilities within the last three years changed only slightly
between 1986 and 1995--from 62 percent to 64 percent. The most commonly
cited reason for not hiring people with disabilities, both in 1986
and 1995, was a lack of qualified applicants.
One incentive in the tax code intended to promote
the employment of people with high levels of unemployment is the
Targeted Jobs Tax Credit. Enacted in 1977 and renewed periodically
since that time, the provision allows a credit to employers for
hiring members of specific disadvantaged groups. People with disabilities
are one of several targeted groups, representing a small portion
of those hired under the credit (about 7 percent in 1987). No data
are available about the impact of the credit on the employment rate
of people with disabilities or on employers of people with disabilities.
Shortly after ADA was enacted, a disability access
credit was enacted, amending the tax code to provide tax relief
to small businesses that incur eligible costs in complying with
the law. The credit was an addition to the Section 190 deduction,
which has been available to businesses since 1976 for expenses incurred
in removing barriers. No data are available about the use by employers
or businesses of either of these tax code provisions (Schaffer 1991).
Key Legislation in the Past Decade
The Rehabilitation Act Amendments
of 1986 (P.L. 99-506) amended the definition of "severe
handicap" to include functional as well as categorical criteria
and clarified that part-time work and supported employment are viable
outcomes of rehabilitation services. States were required to plan
for individuals making the transition from school to work.
The Americans with Disabilities
Act of 1990 (P.L. 101-336) prohibits discrimination
on the basis of disability in businesses with 15 or more employees.
Qualified individuals with disabilities are protected by the law.
Employers are required to provide reasonable accommodations so long
as they do not impose an undue hardship on the business.
The Revenue Reconciliation Act of
1990 (P.L. 101-508) amends the tax code with an "access credit"
intended to provide tax relief to small businesses that incur eligible
costs when complying with ADA.
The Rehabilitation Act Amendments
of 1992 (P.L. 102-569) require state vocational rehabilitation
agencies to provide for the individual's choice of services and
service providers; to focus on careers, not just entry-level jobs;
and to presume that most individuals with disabilities are employable.
Initiatives to ensure participation of minorities were authorized.
The Family and Medical Leave Act
of 1993 (P.L. 103-3) allows workers to take up to 12 weeks
of unpaid leave from work every year to care for newborn or adopted
children, to care for family members with serious health conditions,
or to recover from serious health conditions.
The Targeted Jobs Tax Credit (P.L.
74-271) allows employers to claim a credit equal to 40 percent
of the first $6000 in wages of a person hired in a category of chronically
unemployed workers. This credit has been intermittently renewed
over the last decade, but has lapsed at the time this report is
being written.
Recommendations
We know definitively that people with disabilities,
including those with severe disabilities, can be effective workers
and contribute to the economy. It is not the capacities of people
with disabilities that limits their employment, but outdated attitudinal,
organizational, societal and policy barriers.
General Employment Policy
1. The President, the Congress and federal agencies
should ensure that all generic employment and labor policy and programs
presume that people with disabilities are part of the American workforce.
As long as people with disabilities are viewed as
outside of the labor force, they will never fully join the mainstream
of American life. The appropriate role of all federal policy is
to support people with disabilities in maximizing their employment.
Inclusion of People with Disabilities
2. The Congress and the President should ensure that
all policy initiatives and programs having an impact on educational
attainment and employment opportunities are designed and implemented
to meet the needs and maximize the talents of all individuals, including
those with disabilities.
Employment and training programs for people with disabilities
should be integrated with employment and training programs for all
other Americans. Accommodations and specialized services and supports
should be provided as needed in the generic programs to people with
disabilities. For example, direct communication access should be
ensured for people who are deaf or hard of hearing. An overhaul
of federal and state systems may be required to achieve a generic
system that provides accommodations and access in order to successfully
meet the needs of people with disabilities.
Employment Goals
3. The President should issue an executive order directing
the Secretary of Labor to promote the employment of people with
disabilities and to establish employment goals for people with disabilities
to be reached by the year 2006.
Establishing national goals is an effective way to
galvanize public attention, build broad support and provide a public
mechanism for policy accountability. The nation has effectively
used this process in campaigns to improve the health of the nation's
citizenry and decrease infant mortality. The secretary of labor
should work in conjunction with other relevant federal agencies
and the disability community to establish employment goals.
Employment Statistics and Research
4. The President and the Congress should direct the
Departments of Labor and Commerce, through the Bureau of Labor Statistics
and the Bureau of the Census and in consultation with the chairman
of PCEPD, to add people with disabilities as a group within the
national labor force statistics reported monthly and to monitor
reasons people with disabilities report for not working. This information
should be available for types of disability, state and local areas,
and diverse cultural and racial groups. These statistics should
be used to monitor progress toward the employment goals for people
with disabilities established in the previous recommendation.
Availability of these data will enable public monitoring
of progress toward meeting the employment goals. It will provide
the same level of visibility for the employment rate of people with
disabilities as that provided for other protected groups, such as
women and ethnic and racial minorities, when their employment rates
are reported. It will promote a public assumption that people with
disabilities are part of the workforce.
5. The Department of Labor, in conjunction with the
National Institute for Disability and Rehabilitation Research in
the Department of Education, should establish research priorities
consistent with achieving the targeted employment goals for the
year 2006.
Labor Market Trends
6. The Secretary of Labor and the chairman of PCEPD,
in conjunction with representatives from business, labor, people
with disabilities and labor market economists, should assess our
nation's efforts to employ people with disabilities in the context
of current and future labor market trends, both nationally and locally,
and should provide recommendations for maximizing the employment
of people with disabilities by the year 2006.
Health Insurance
7. Congress should enact legislation ensuring that
adequate health care and long-term supports--including personal
assistance services and assistive technology--will be available
to people with disabilities who are employed, are seeking employment
or are changing jobs.
The most often cited barrier to employment for people
with disabilities is lack of access to adequate health care. For
many people with disabilities, the only route to secure health care
is through cash benefit programs. If they work, they risk losing
those cash benefits and the health insurance that accompanies them.
The unavailability of long-term services, such as personal assistance
services and assistive technology, is also an obstacle to achieving
and maintaining employment. Furthermore, people with disabilities--even
those who are highly educated with strong work histories--may find
it difficult to secure jobs with salaries that are high enough to
enable them to pay for the support services they require.
Enforcement of Civil Rights Laws
8. The President, executive agencies and the Congress
should vigorously support full enforcement of ADA, the Rehabilitation
Act and other federal civil rights laws, supporting this enforcement
with adequate funding, culturally appropriate outreach and accessible
technical assistance services.
Incentives for Employers
9. The Secretary of Labor, in conjunction with the
chairman of PCEPD, should establish a working group of employers
and people with disabilities to identify and expand meaningful financial
incentives for employers to meet the needs of their employees with
disabilities for workplace access, accommodations, and family support
and to promote the use of existing incentives.
Many employers are unaware of or do not utilize existing
incentives to employ people with disabilities, such as the disability
access credit. In addition, employers have expressed a need for
financial incentives to cover costs for employees with disabilities
that may be beyond the bounds of the "reasonable accommodation"
requirement.
Youth
10. The Secretary of Labor, the Secretary of Education
and the Commissioner of Social Security should work together to
ensure that generic policies and programs that target youth include
youth with disabilities, sending the clear message that the goals
for their adult lives are employment and independence, not lifetimes
of dependence or support on benefits.
The importance of work and individual responsibility
should be woven into the educational programs of youth with disabilities,
including effective transition planning for students in special
education and real work experiences in middle school and high school.
The assumption should be that all students with disabilities have
the capacity to work and should be given every opportunity to prepare
for a lifetime of work.
Media Campaigns
11. The President and the Congress should provide funding
for and direct federal agencies with employment and/or ADA enforcement
responsibilities to initiate and carry out national, state and local
media campaigns designed to change public attitudes to support the
vision of inclusion, empowerment and independence set out in ADA,
thereby promoting employment opportunities of people with disabilities.
Such a media campaign should be a part of the media
campaign called for in recommendation 9 of the Civil Rights section
of this report.
Employment of People with Significant Disabilities
12. The President and the Congress should ensure that
people with significant disabilities, including those with developmental
disabilities, are provided with opportunities and programs to support
them in working in inclusive settings at real jobs for real wages.
Despite some progress in employing people with developmental
disabilities in real jobs for real wages, many remain in sheltered
workshops with sub-minimum wages and few options. Strategies such
as supported employment have promoted competitive employment for
people often overlooked by mainstream employers. More initiatives
to ensure real jobs for people with the most significant disabilities
need to be developed.
Entrepreneurship
13. The Congress and the President should develop and
fund initiatives to promote innovative employment and entrepreneurship
among people with disabilities.
Social
Security and Other Income Maintenance
Dependency increases the costs of entitlements,
lowers our gross national product, and reduces revenue to the
Federal Government....People with disabilities want to work...to
be productive, self-supporting and tax-paying participants in
society.
Tony Coelho
Chairman, PCEPD
1990
Now, in the interlude between the baby boom and
its echo, is the time for us to create constructive alternatives
to people declaring themselves "unable to engage in substantial
gainful activity." Now is the time for a new approach toward people
with disabilities. Such an approach will help to alleviate the
coming labor shortage, and it will do much to reduce the "disability
crunch" that should arrive within a few years.
Edward Berkowitz and David Dean
May 9, 1989
The concept of income maintenance historically is
one of providing income to individuals when they are unable to generate
it themselves by working. Retirement because of age is the most
common reason for the provision of income maintenance. Increasingly,
people with disabilities have become recipients of income maintenance
through both welfare and Social Security.
Social Security
At $63 billion annually, Social Security represents
the Federal Government's largest expenditure on people with disabilities.
When Medicaid and Medicare expenditures are added, the figure is
over $120 billion.
Social Security manages two programs that provide
income support (cash) to people with disabilities: Supplemental
Security Income (SSI) and Social Security Disability Insurance (SSDI).
Beneficiaries for both programs are those who are determined to
be "too disabled to work." Children are deemed eligible for SSI
when they are determined to be substantially limited in their ability
to function appropriately for their age. SSI is an income maintenance
program serving poor people with disabilities. SSDI is a social
insurance program available to those who have worked and contributed
to the Social Security trust fund. Acceptance on the SSI rolls automatically
confers Medicaid coverage in most states. Acceptance on the SSDI
rolls automatically confers Medicare coverage after a two-year waiting
period.
Both programs have expanded considerably in the last
decade. From 1984 to 1994, the number of beneficiaries of the two
programs combined has grown from 4.5 million to 8.5 million. Expenditures
have increased from $25.3 billion to $54.9 billion. Despite this
considerable federal expenditure, most people on the rolls live
at or below the poverty level. The average SSI federal payment as
of September 1995 was $334 per month. The average SSDI payment was
$662 per month.
Most people with disabilities who become Social Security
beneficiaries remain on the rolls for their entire lives. The younger
an individual is who comes on the rolls, the longer she or he is
likely to stay on the rolls. For example, a 9-year-old SSI beneficiary,
on average, will stay on the rolls about 27 years. The percentage
of young beneficiaries, those under the age of 30, has increased
by 43 percent between 1989 and 1993.
A number of provisions have been enacted to promote
the return to work of beneficiaries. These are outlined below. In
addition, the Social Security Administration (SSA) reimburses state
vocational rehabilitation agencies for the rehabilitation of SSI
and SSDI beneficiaries. SSA is currently implementing a program
to reimburse private providers for rehabilitation services to beneficiaries.
While these incentives have yielded increased employment by those
who utilize them, they have not been effective in enabling people
to actually terminate their benefits and return to employment. Less
than one-half of 1 percent of beneficiaries, or about 6000 people
annually, leave the rolls to return to work as a result of rehabilitation
efforts. This percentage has been consistent over the life of the
programs.
Designed as a safety net for people who are terminally
ill or too severely disabled to work, Social Security programs for
people with disabilities have had the unintended effect of trapping
people with disabilities in lifetimes of poverty.
It is unlikely that any reforms within the Social
Security system alone will be effective in yielding a significantly
increased employment level for people with disabilities. Issues
such as access to adequate health insurance and wages that are high
enough to meet expenses need to be addressed.
The Social Security system is based on the notion
that a person can be determined to be "too disabled to work." Evolution
in knowledge, policy and practice in the last decade has challenged
the concept of being "too disabled to work." We now know that individuals
with severe disabilities can work if they have access to appropriate
support services, accommodations and health care.
The Social Security system does not encourage people
with disabilities to maximize their capabilities and competencies
toward the achievement of independent living. While multiple work
incentives have been enacted, their results are limited.
Other Income Maintenance Programs
The other key federal income maintenance program for
people with disabilities is administered by the Department of Veterans
Affairs. Veterans with disabilities receive about $18.6 billion
in cash per year.
While there are substantial knowledge gaps regarding
the number of recipients of Aid to Families with Dependent Children
(AFDC) who have disabilities, there are studies that suggest that
the prevalence of disability among heads and members of AFDC households
is significant (Zill et al. 1991; Doyle et al. 1990; Adler 1993).
One estimate found that over one in three AFDC households includes
someone with a disability and almost 20 percent of women on AFDC
have a disability (Adler 1993). The disability-related needs of
these individuals are rarely identified or addressed by the programs
that serve AFDC recipients.
Every state runs a workers' compensation program,
whereby workers who become disabled as a result of an on-the-job
injury receive compensation, usually in the form of cash. These
programs have become quite costly over the last decade and reforms
in many states are under way. In too many instances, support for
a return to work is lacking.
The other major source of income maintenance is private
long-term disability insurance, most often provided to employees
through employers. Often employees who stop working because of an
illness or disability begin drawing payments from their employers
and eventually shift onto SSDI, either as a supplement or when private
payments end.
Too frequently these systems provide incentives for
people with disabilities to stop working when they are capable of
continued work with additional supports or modifications. Because
there is no well-established or well-funded system to provide supports
to maximize employment and there is a well-established system for
providing cash compensation, people with disabilities may have no
choice except to leave the workforce and accept the cash.
Key Legislation in the Past Decade
Limiting Eligibility for Benefits
The Contract with America Advancement
Act of 1996 (P.L. 104-121) prohibits the award of SSI, SSDI,
Medicaid, and Medicare benefits to people who are disabled if drug
addiction or alcoholism is a contributing factor material to the
determination of disability.
Work Incentives
Since the early 1970s advocates and policy makers
have worked to develop incentives for people on SSI and SSDI to
work. Today a patchwork of over a dozen separate provisions operate
with the goal of promoting employment. While many of these have
been in place for longer than a decade, most have been amended and
fine-tuned within the last decade in an ongoing effort to render
them more effective.
Work Incentives for SSDI Beneficiaries
Trial Work Period. A beneficiary
can work for nine months without losing benefits.
Extended Period of Eligibility.
For 36 months following the trial work period, cash benefits
are reinstated for any month in which earnings are below the substantial
gainful activity level.
Substantial Gainful Activity.
After the trial work period, a person can earn $500 ($880 for people
who are blind) without losing any cash benefits.
Medicare Coverage. A beneficiary
receives 39 months of hospital and medical insurance after the trial
work period.
Medicare Buy-In. After the
39 months of premium-free Medicare, Medicare can be purchased at
the same monthly cost paid by uninsured retired beneficiaries.
Work Incentives for SSI Beneficiaries
Section 1619(A) Benefit Offset.
SSI beneficiaries working at or above the substantial gainful
activity level receive an offset of $1 for every $2 earned.
Section 1619 (B) Continuation of
Medicaid. Beneficiaries continue to receive Medicaid coverage
when cash benefits are totally offset by earnings.
SSI Work Expenses for Blind Persons
who Work. The portion of earnings spent by a blind person
in order to work for transportation, taxes, special equipment, etc.,
is not counted in figuring SSI payments.
Plans for Achieving Self-Support.
Beneficiaries can set aside income or resources for a period of
time to meet expenses for reaching an occupational goal. The income
or resources are not counted when determining the SSI payment amount.
Earned Income Exclusion.
The first $65 of earnings in a month plus one half of the remainder
is not counted when figuring SSI payments.
Student Earned Income Exclusion.
A person under 22 who regularly attends school can exclude up to
$400 in earnings per month (maximum of $1620 per year).
Work Incentives That Apply to Both SSI and SSDI
Impairment-Related Work Expenses.
Beneficiaries can deduct the cost of certain impairment-related
items or services needed to work (such as transportation or medical
devices) from earnings.
Subsidy. The value of support
a person receives on the job is deducted from earnings to determine
if a person is engaged in substantial gainful activity.
Continued Payment Under a Vocational
Rehabilitation Program. Beneficiaries who improve medically
and are no longer considered disabled may continue to receive benefits
if they are participating in any approved vocational rehabilitation
program that will likely enable them to work permanently.
Recommendations
NCD concludes that the current set of policies and
programs intended to provide economic security to individuals with
disabilities is often a life preserver for people it serves. Cash
benefits are the difference between sustenance and destitution for
many recipients.
However, many features of the SSI and SSDI programs
serve as obstacles to maximizing independence and self-sufficiency.
Lack of access to health insurance and lack of flexibility supporting
maximal employment often sentence people with significant disabilities
to lifetimes of dependence. The current set of policies and programs
too often functions more as a spiderweb than as a safety net, capturing
people in poverty rather than supporting them to maximize their
potential and their employment. The existing matrix of income maintenance
and non-cash support programs is too complex, fragmented and punitive.
These problems call for alternatives to reorient the program to
assume and promote productivity, not dependence.
NCD envisions a system that serves as a trampoline,
rather than a safety net, supporting people as they maximize their
potential, catching them when they fall, and supporting their efforts
toward independence again, always moving toward the goal of maximal
employment. The system should function in a manner similar to our
unemployment insurance system while addressing the unique needs
of workers with disabilities who, due to the nature of their disability,
may be unable to work continuously or at a consistent level of output.
Key ingredients of this system include access to health insurance,
tax credits to ensure that transitioning from benefits to employment
does not produce financial disincentives, flexibility to accommodate
disabilities that intermittently limit work capacity, and third
parties with a vested interest in assisting people with disabilities
in maximizing their employment.
Employment at the Core of Economic Security
1. The President and Congress should devise national
policy that enables individuals with disabilities to develop economic
security that is based on employment, not accessing benefits; and
includes the supports, services and civil rights protections necessary
to attain and maintain employment; and that decreases the dependency
of people with disabilities.
For many people on benefits, Social Security represents
their only opportunity for some degree of dignity while they are
terminally ill. These individuals will never return to work. However,
for the many who could work with appropriate support, both public
and private income support programs must encourage work as the outcome
of temporary benefits. Benefits must be constructed to provide on
the path toward employment, not early retirement. The assumption
that undergirds these programs should be one of productivity, not
dependence. National policy should ensure that employment provides
a genuine economic advantage over benefits. Currently, income maintenance
policy may require a person with a disability to make a choice between
a job and a personal attendant, between getting married and having
health insurance, between having an income and enrolling in higher
education. Economic security policy should always support maximal
employment and independence and recognize investments in the future,
such as higher education.
Economic Support
2. Congress should enact legislation, including amendments
to the Social Security Act, that ensures a fundamental level of
support for working-age adults with disabilities who are in economic
need. This support should lead to employment as the desired outcome
whenever possible. Key aspects of this legislation should include
the following:
a) cash assistance at the poverty level that ends
upon return to work but is immediately replaced by a Disabled
Worker Tax Credit and a Personal Assistance Services Tax Credit,
both of which are phased out as income rises;
This recommendation would be effective only if long-term
services were available and if wages from employment are sufficient
for self-support.
b) a de-linking of eligibility for cash benefits
and other supports, including health insurance, personal assistance,
housing subsidies and food stamps;
The de-linking of benefits will eliminate the current
"cliff effect" that many people experience when they leave the Social
Security rolls and simultaneously lose health insurance, long-term
services (including personal assistance services), housing subsidies
and food stamps. Such de-linking should not apply to the eligibility
for Medicaid/Medicare that usually accompanies SSI/SSDI eligibility.
c) flexibility in the system so that people can be
supported during intermittent periods when their disability may
temporarily limit their ability to work;
d) health insurance coverage (including some long-term
services) for individuals with disabilities who work or who return
to work but who cannot obtain or afford health coverage;
e) supports and services, including housing, personal
assistance services, assistive technology and vocational rehabilitation,
that are necessary to ensure independent living and self-determination;
f) an accommodation fund that would pay for individual
accommodations for Social Security beneficiaries that are beyond
the reasonable accommodations required by ADA and that would enable
these beneficiaries to leave the rolls and work.
g) service and support brokers to facilitate the
attaining and maintaining of employment by individuals with disabilities
who are capable of working;
A broker is a service coordinator whose job is to
support the economic security and return-to-work efforts of people
with disabilities. Brokers routinely provide information on employment
options and supports to people with disabilities. These brokers
could be private agencies run by people with disabilities;
h) maintenance of some cash support and full health
insurance for those whose disabilities are so significant that
they will not be able to support themselves by full-time employment.
This economic security package is intended to support
independence and employment. Because many people leaving the Social
Security rolls often take minimum-wage jobs, their income from working
is not sufficient to cover basic living expenses, in particular
disability-related expenses that are covered by public health insurance.
The Disabled Worker Tax Credit (which could function in a manner
similar to the Earned Income Tax Credit), the Personal Assistance
Services Tax Credit, and the continuation of health insurance are
intended to ensure that working is economically more advantageous
than cash benefits. Access to long-term support services based on
need, not eligibility for cash assistance, is also intended to support
employment and independence. The accommodation fund is intended
to fund technological accommodations, such as expensive computer
systems and lifts or hand controls on vehicles, that will enable
employment. The use of a broker to support people with disabilities
in their efforts to maximize independence and employment may take
many forms. One possibility is to issue "tickets" to beneficiaries
who may deposit their tickets with the broker of their choice, who,
in turn, will be paid by Social Security or another funding source
to assist the individual in finding and keeping a job.
Employment Retention
3) The Commissioner of Social Security, the Secretary
of Labor, the Secretary of Education and the chairman of PCEPD should
work with state and local governments, employers, organized labor
and the disability community to initiate policies and programs and,
if necessary, legislation amending programs such as workers' compensation
to ensure prompt comprehensive intervention for workers who become
injured or disabled while they are employed, with the goal of returning
workers as quickly as possible to the workforce.
Most people with disabilities become disabled during
their working years. The point at which a person becomes disabled
is the point at which he or she is most vulnerable to long-term
separation from employment. Too often workers' compensation systems,
long-term private disability insurance and Social Security promote
that separation rather than a return to work. Early intervention
at the onset of disability can serve to prevent entry onto the long-term
insurance rolls, including Social Security, and retain people in
the workforce in a productive capacity as long as possible.
Tax Incentives for Employers
4) Congress should develop tax incentives for employers
who hire people with disabilities who have been receiving SSI or
SSDI for more than two years.
Health
Insurance and Health Care
We have learned that our system of health care
is not really committed to the concept of family, and further,
is not really committed to the concept of health care for all.
This system, instead, offers health care to some people, in some
places, for some diagnoses, in some age groups, some of the time.
Abioses and Molly Cole, parents of
Mariyama, a child with a disability
Testimony before the National Council on Disability
Hartford, Connecticut
June 17, 1991
I am prepared to die for my country, but not
for my insurance company.
Justin Dart, disability advocate
People with disabilities have increasingly identified
the lack of access to adequate health care and health insurance
as a major obstacle to employment and independent living. Some progress
has been made in challenging discriminatory practices under the
Americans with Disabilities Act (ADA). People with disabilities
participated actively in the health care reform debates of the early
1990s, securing provisions designed to meet their needs in both
President Clinton's proposals and a number of bills introduced in
Congress. The lack of significant progress in health care reform
to date, the trend toward managed care and reforms proposed for
Medicaid and Medicare, and the continued bias toward institutional,
rather than community-based care, greatly concern people with disabilities
and their families. (See NCD reports Disability Perspectives
and Recommendations on Proposals to Reform the Medicaid and Medicare
Programs, November 9, 1995 and Sharing the Risk and Ensuring
Independence: A Disability Perspective on Access to Health Insurance
and Health-Related Services, March 4, 1993.)
All people are at risk of developing a disability
at some time in their lives, from accident, injury, illness, or
from the aging process itself. However, people are generally regarded
by insurance companies as high risk, in terms of health care costs,
when they become disabled or older or have a family history of disability.
Our current health care system has increasingly sought to segregate
those who are high health care users or potentially high health
care users from those who are "low risk." Rather than spreading
the risk equitably throughout the population, the current system
has minimized the risk for some and made access to insurance virtually
impossible for others.
Our health care system, which is designed to address
acute rather than chronic health conditions, rarely provides for
the long-term services and supports that are often needed by people
with disabilities. In addition, little emphasis is placed on prevention
and wellness in order to avoid more costly treatments in the future.
Access to Private and Public Health Insurance
As the cost of health care and health insurance has
escalated, people with disabilities have found it increasingly difficult
to meet their needs through private insurance. About 4.6 million
people with disabilities of working age, or 15 percent of all working
age people with disabilities, lack any health insurance (McNeil
1993), and millions more are not insured for preexisting conditions.
People with disabilities are more likely to receive health care
through public sector programs than people without disabilities.
About 9.2 million people with disabilities receive Medicaid and/or
Medicare, largely as a result of being on Supplemental Security
Income (SSI) or Social Security Disability Insurance (SSDI). While
the majority of people with disabilities have some private health
insurance, few have adequate coverage that they can depend on to
meet their health-related needs, due to preexisting-condition exclusions,
minimal benefit packages and benefit caps. Durable medical equipment,
assistive technology and personal assistance services are common
needs of people with disabilities that are rarely fully covered
by health insurance plans.
Like people who are elderly, people with disabilities
generally utilize more health care services than people without
disabilities. For example, in 1993, 15 percent of Medicaid beneficiaries
(those with disabilities) accounted for 39 percent of expenditures
(NCD 1995). The significant expansion of Medicaid and Medicare has
occurred to some extent because escalating restrictions from private
insurers have increasingly pushed high-risk, high utilization people
with disabilities into public sector programs. In addition, high
health care costs and limited access to private health insurance
encourage participation in the SSI and SSDI programs by people with
disabilities in order to gain access to public health insurance.
While most people with disabilities have private health
insurance, many receive it as a result of a family member's group
policy through an employer. Working-age people with disabilities
who are working full-time have the highest rate of private health
insurance. Those who are working part-time are at considerable risk
of being uninsured because they are likely to be ineligible both
for an employer's group coverage and for public coverage, which
is generally available only to those who are determined by Social
Security to be "too disabled to work" (DeJong 1995).
Parents of children with disabilities are rarely secure
in knowing that they will be able to provide for their children's
health care needs. Private policies held by working parents may
or may not cover children. When they do, annual caps and lifetime
maximums may be met quickly. The complex array of public programs
intended to assist parents is often overwhelming and baffling. High-risk
pools established in some states may be very expensive and have
long waiting lists. Parents may spend inordinate amounts of time
trying to understand what is available and how to access it. They
are often confronted with making guilt-inducing decisions requiring
painful trade-offs between financial solvency, the needs of other
family members and the health of the child with a disability. Some
families have found themselves in the position of having to choose
between relinquishing custody of their children to the state in
order to become eligible for a program that would pay their child's
medical bills and facing financial ruin from attempting to pay for
the needed medical services themselves.
During the last decade, people with mental illness
and their advocates have effectively articulated the need for parity
in mental health coverage in health insurance policies. While little
policy progress is evident, the issue of parity has been well established
as a part of the health care reform debate.
Health Insurance and Employment
People with disabilities frequently list the lack
of access to adequate and affordable health insurance as a major
barrier to employment. Discouraged by knowing that they are unlikely
to have access to adequate health insurance through employers, they
may eventually drop out of the labor market altogether. Private
insurance market practices, such as preexisting-condition exclusions,
limits on benefits and caps on payments present problems for people
with disabilities. Public health insurance is generally available
only to those who are not working, though there have been some legislative
changes to provide incentives for those who go back to work after
being on benefits to keep their health insurance. The increasing
trend toward part-time work is also problematic, as part-time employment
rarely brings access to health insurance.
Those who need personal assistance services and other
long-term supports generally must pay for those services out of
their own pockets when they are working. Medicaid is virtually the
only source of reimbursement for long-term services and supports,
and it is generally unavailable to those who are working. Virtually
no private health insurance reimburses for long-term services such
as personal assistance.
Discrimination and ADA
NCD's original draft of ADA in 1988 included an omnibus
provision prohibiting discrimination in the provision of health
insurance. This provision was subsequently significantly restricted
so that practices such as preexisting condition exclusions and underwriting
would not be affected. People with disabilities continue to face
discrimination in obtaining health insurance and health care services.
ADA has been used by some to effectively challenge
discriminatory practices in the provision of health care and health
insurance. In the early 1990s the state of Oregon submitted a Medicaid
waiver application to the Federal Government intended to redistribute
Medicaid benefits in the state. The application was initially rejected
on the grounds that it violated ADA. People with disabilities have
successfully used ADA to challenge caps on benefits specific to
particular diseases, such as HIV/AIDS. Limitations on specific treatments
for particular diagnoses have also been rejected as potential violations
of ADA. For example, women with breast cancer have successfully
challenged their exclusion from autologous bone marrow transplants
by health insurance companies. Spouses and parents have prevailed
in using ADA to secure health insurance through their employers
for their husbands, wives and children with disabilities.
Managed Care
The past decade has ushered in an increasing trend
toward the provision of health care in a managed care, rather than
fee-for-service, delivery system. Although there are myriad types
of managed care arrangements, managed care often provides access
to health care services at a prepaid capitated rate of payment to
providers. Managed care is increasingly being adopted in both the
private and public sectors. Designed to stem the growing costs of
health care, managed care has significant implications for people
with disabilities.
Although some coordinated systems of care are effective
in meeting the health care needs of people with disabilities and
chronic illnesses, many managed care plans tend to underserve high
users of care. Managed care is intended to save health care dollars
by creating a network of providers who agree to provide all health
services for a fixed per capita price known as a "capitation payment."
Limiting access to specialty care through the use of primary care
"gatekeeper" physicians is another managed care strategy intended
to control costs. With a limited network of providers, consumers
are restricted in their choice of doctor and other providers. Capitation
arrangements provide incentives to underserve high users of care
because these plans are designed to serve "average" patients who
need health services infrequently. In addition, providers in the
plan may benefit financially from restricting services to beneficiaries.
Thus, managed care generally creates incentives to
underserve individuals who may require costly or frequent health
care services. People with disabilities who need specialists may
have a more difficult time accessing specialized services under
managed care. Some have recommended that health plans and providers
be "risk-adjusted," or compensated for the risk profile of their
subscribers, in order to minimize risk competition. In the absence
of an adequate risk-adjustment methodology, others have suggested
that people with disabilities and other higher-risk groups be "carved
out" into separate managed care systems in order to reduce the incentive
to underserve. The challenge for disability and health policy is
to develop risk-neutral financing and service delivery systems that
do not undermine the full participation and equal access principles
of ADA while simultaneously meeting the ongoing health care needs
of people with disabilities.
For people with disabilities and chronic illnesses,
incentives built into managed care often run counter to effective
rehabilitation, prevention of secondary disabilities and complications,
and independent living. It is important to note that the savings
generated from managed care are usually not reinvested in the plan
to expand benefits or improve quality.
Some people with disabilities who have been treated
by the same specialist for decades are finding that they must leave
that specialist and seek a new provider because the fee-for-service
plan they once used is no longer available through their employer.
Whether or not they will have access to a specialist in a managed
care plan is uncertain, and even if they do, they will have to start
all over again with a doctor who does not know their history and
may have little experience with their particular disability or chronic
illness.
In acknowledgment of the potential shortcomings of
managed care for consumers with disabilities and chronic illnesses,
a number of bills have been introduced in Congress to establish
federal consumer and provider protections.
Medicaid Reform
With the rising costs of the Medicaid program, dramatic
proposals in the recent past have taken the form of block grants
to states and caps on the federal contribution to this program.
With over five million people with disabilities on Medicaid, many
of whom receive long-term services and supports, these proposals
are particularly troubling to the disability community. Some proposals
even allow states to define who has a disability for eligibility
in the program, with no federal standard. Proposals to grant states
maximum flexibility in designing their own programs would allow
states complete authority over the amount, duration and scope of
benefits provided. The funding formula under these proposals would
severely restrict Medicaid service, leading inevitably to decreased
benefits for fewer people. Finally, important legal remedies would
be eliminated under some proposals, leading to limited recourse
for consumers.
Medicare Reform
Proposals to dramatically scale back expenditures
on the Medicare program have raised significant concerns about its
future. Although Medicare covers approximately 35 million people
over the age of 65, it also covers 4.2 million younger people with
disabilities. Most people with disabilities have generally opposed
efforts to dramatically reduce Medicare expenditures and are also
concerned with proposals to shift large numbers of beneficiaries
into private managed care plans. Of particular concern to people
with disabilities is the outdated benefit package that Medicare
offers its recipients, particularly in the areas of assistive technologies,
home and community-based care, and proven complementary medicine.
Many believe that the Medicare benefits package should be reviewed
periodically to make it more consistent with contemporary health
services and medical practice.
Cost Savings and Quality of Life
As the health care reform debate has proceeded in
the last decade, some disturbing proposals and dialogue have emerged
that greatly concern the disability community. Driven by escalating
costs, the discussion has often been cast in the context of cost-effectiveness.
Rationing proposals have raised questions about the value of the
life of a person with a disability compared with the value of the
life of a person without a disability. One commentator has characterized
the public debate as posing the ethical question "Can we afford
disabled people?" (Gallagher 1995). ADA answers this question by
affirming that the lives of people with disabilities are as valuable
as the lives of all other Americans.
The Oregon Medicaid waiver request raised such ethical
questions. Central to the formulation of the original Oregon Medicaid
waiver was a "quality of life" assessment that evaluated medical
services in terms of their impact on the quality of life of those
who received them. Depending on how such assessments are framed,
they can relegate people with disabilities to lower quality-of-life
status than those without disabilities. Such assessments can result
in the denial of health-related services to people with disabilities
on the grounds that these services will not necessarily improve
their quality of life, that is, "cure" or significantly lessen their
disability. The challenge for disability policy is to develop cost-effectiveness
criteria that do not put people with disabilities at a disadvantage
in resource allocation or health care decision making.
Key Legislation in the Past Decade
The Americans with Disabilities
Act of 1990 (P.L. 101-336). This broad antidiscrimination
legislation includes a prohibition against discrimination in the
terms and conditions of employment, including health insurance.
Thus, if a person with a disability is hired, he or she must have
equal access to the health insurance provided by the employer to
other employees. Refusing to hire a person with a disability because
of concerns about health insurance costs is prohibited; however,
medical underwriting is specifically permitted. ADA requires the
provision of auxiliary aids and services in public accommodations,
including offices of health services providers.
Medicaid amendments. Numerous
amendments to the Medicaid program over the last decade have promoted
increased community-based services for people with disabilities,
such as personal assistance, case management, supported employment
and psychiatric rehabilitation.
Social Security work incentives.
People with disabilities leaving the SSI and SSDI rolls may continue
to participate in Medicaid or Medicare indefinitely under certain
conditions.
Recommendations
The lack of access to health insurance for people
with disabilities is one of the most significant contributors to
the low employment rate and the dependence of people with disabilities.
In order to truly achieve independence and meet the goals of ADA,
significant health policy reforms are necessary throughout the next
decade.
Recent trends in publicly subsidized and privately
funded health care programs in this country are of great concern
to people with disabilities. The existing health care system disproportionately
and negatively affects users of frequent or specialized health services.
Health care continues to be strictly defined in medical terms without
regard to the importance of enhancing function and independence.
Some allege that the corporatization and consolidation of medicine
diverts vital resources away from broader coverage and comprehensive
benefits and toward investors' portfolios. The strong federal role
in publicly subsidized health programs is increasingly being ceded
to the states and the private market. Long-entrenched systemic biases
continue to encourage congregate-care nursing home settings as the
first option rather than the last resort. Rather than reforming
the system to ensure the cross-subsidization necessary to provide
appropriate health services to any individual in need, proposals
are directed toward further segmentation of the market based on
health risks.
Health Care as a Right
1. Congress should enact legislation that establishes
health care as a right of all Americans without regard to a person's
health, functional status or sociodemographic factors (e.g., age,
race, employment, income).
Health care should be a right of all Americans and
everyone should be able to access the health services they need
when they need them. The success of such a system should be measured
by a set of principles including accessibility, affordability, continuity,
appropriateness, quality (based on outcomes), consumer control,
comprehensiveness and equity.
Total Coverage by the Year 2006
2. In addition to limiting preexisting condition exclusions
and improving portability and renewability of private insurance
coverage, Congress should address the next series of health reforms
designed to achieve a consumer-driven, risk-neutral health care
system that covers everyone by 2006.
The calls for incrementalism heard during the defeat
of comprehensive health system reform should now fuel a series of
federal laws designed to achieve a health care system that spreads
risk, is driven by consumers of health services and covers everyone.
The next series of private insurance reforms should include community
rating and limitations on premium increases, open enrollment mechanisms,
a standard benefit package (to facilitate health plan comparisons),
the elimination of lifetime aggregate insurance caps, meaningful
choice of at least three health plans, portability in the individual
private insurance market, the establishment of federal standards
under plans that are subject to the Employment Retirement Income
Security Act (ERISA), and a sliding scale based on income for premiums
and copayments. Medical savings accounts should not be pursued,
as they encourage segmentation of the health insurance market based
on risk.
Consumer Driven System
3. Congress should ensure that all health care reforms
and changes, in both the private and public sectors, make health
care more consumer driven and include the following features:
a) adequate consumer information to empower consumers
to make informed decisions when choosing a health plan or provider;
b) quality standards (e.g., health care report cards)
that are developed in collaboration with people with disabilities
and are responsive to the clinical and information needs of consumers
with disabilities;
c) adequate appeals and grievance processes to enable
consumers to challenge health plans and health provider decisions,
including arbitration mechanisms, ombudsmen independent of health
plans, and private rights of action;
d) consumer governance in which consumers and purchasers,
not providers and payers, dominate the governing of the health
care system through purchasing cooperatives and various oversight
mechanisms.
Managed Care
4. Congress should maintain a strong federal role in
setting standards and monitoring compliance of Medicare- and Medicaid-sponsored
managed care health plans. In the market-based system of managed
care, Congress should establish a framework that will ensure a more
risk-neutral, consumer-driven managed care system that does not
underserve people with frequent or specialized health needs and
allows consumers to choose from a range of options.
A strong federal role in standard setting and monitoring
of managed care will ensure that health plans compete on price and
quality, not on price and risk. All Medicare and Medicaid beneficiaries
should be given a choice of at least three viable health plans rather
than being mandatorily assigned to a managed care plan. Each managed
care plan that serves Medicare and Medicaid beneficiaries should
be required to conduct an individual needs assessment at the time
of enrollment. Such information must be acquired with the consent
of the beneficiary and must remain confidential.
All managed care plans, including those that service
only privately insured persons, should be required to meet federal
standards to ensure access to specialty care, adequate grievance
and appeals procedures including ombudspersons, and equitable utilization
review criteria. Financing mechanisms should be studied (in a timely
manner) to discourage underservice in all managed care plans, particularly
capitated systems of care. These mechanisms may take the form of
risk adjustments and other targeted approaches.
Antidiscrimination
5. The Department of Justice (DOJ) should develop regulations
for ADA and the Rehabilitation Act of 1973 that clarify how disability
discrimination laws apply to private health insurance companies
and health plans as public accommodations (ADA Title III), instrumentalities
of state and local governments (ADA Title II), federal contractors
(Rehabilitation Act Section 503), and recipients of federal funds
(Rehabilitation Act Section 504).
Many people believe that private health insurance
companies and health plans should be considered places of public
accommodation and therefore subject to Title III of ADA. Private
health plans that perform the quasi-state function of servicing
Medicaid beneficiaries should be required to meet the standards
of Title II of ADA which applies to state and local governments.
Private health plans that service Medicaid and Medicare patients
should also be required to meet the nondiscrimination provisions
of Sections 503 and 504 of the Rehabilitation Act of 1973, which
apply to federal contractors and recipients of federal funds. NCD
should establish an advisory committee to work with the DOJ to consider
these issues and promulgate regulations clarifying the application
of Titles II and III of ADA and Sections 503 and 504 of the Rehabilitation
Act to private health insurance companies and health plans.
Medicare
6. Congress should reinvest in Medicare by periodically
reviewing the benefit package to provide benefits (particularly
assistive technologies) that accurately reflect contemporary health
and medical practice and expand coverage to people with disabilities
by removing work disincentives.
Although over four million people with disabilities
below the age of 65 receive their health care through the Medicare
program, the benefit package has been designed for the acute health
care needs of senior citizens. In addition, the package of benefits
provided by Medicare was established many years ago and has evolved
slowly, while medical science, health interventions, and independent
living have evolved dramatically during the same period. Despite
attempts to address the work disincentives that are inherent in
the program, many people with disabilities are not returning to
the workforce for fear of losing indispensable health benefits through
Medicare. Rather than cutting funding for Medicare over the next
several years, Congress should reinvest in the program by updating
the benefit package to more accurately reflect the health needs
of people with disabilities, particularly in the areas of assistive
technology and complementary medicine that has proven to be effective.
Resources should also be reinvested in the Medicare program to eliminate
work disincentives.
Medicaid
7. Congress should maintain the individual federal
entitlement to Medicaid services and refrain from decreasing funding
for this vital program for people with disabilities. If the states
are to assume more control of the Medicaid program, a federal definition
of "disability" and a federal private right of action should be
maintained. Medicaid's institutional bias should be transformed
into a presumption that long-term services and supports should be
provided in the home and community.
Reforms that significantly transform the current Medicaid
program with the goal of reducing Medicaid expenditures are most
threatening to the large number of Americans with severe disabilities.
Vastly increasing state control over the Medicaid program without
adequate federal oversight and monitoring could be disastrous to
many Medicaid recipients. Effective reforms of the Medicaid program
can be accomplished without eliminating the underpinnings of the
program. Congress should not eliminate the individual federal entitlement
to Medicaid and should not seek to reduce funding for this program.
The Federal Government should maintain a strong role in standard
setting and monitoring to ensure state compliance with quality and
effective health care service delivery. "Disability" should be defined
at the federal level and a private right of action should be maintained
in federal court to provide states with an incentive to meet the
health needs and long-term services needs of people with disabilities.
Long-term services and support should be provided in the home and
community, with congregate-care settings as the last resort.
Redefining "Medical Necessity"
8. The term "medical necessity" should be clarified
to include the concept of maintaining and improving the functional
capacity of the individual, taking into account consumer choice,
consumer lifestyle, and the long-term cost-effectiveness of the
intervention or equipment under consideration. Specifically:
a) Long-term cost-effectiveness should be evaluated
from a societal perspective, not from a health plan perspective,
since health plans are prone to evaluate need and outcomes using
a more limited time horizon (e.g., time remaining in current enrollment
period) and a more narrow range of cost considerations.
To facilitate the assessment of long-term cost-effectiveness,
the Federal Government should support efforts to develop standardized
data collection protocols that can be applied across various impairment
groups.
b) Interventions designed to maintain function should
include interventions that will slow functional losses among people
with progressive conditions.
c) In individual instances, medical necessity should
be determined by persons who are knowledgeable about the needs
of people with disabilities in consultation with the person with
a disability or that person's.
d) In determining medical necessity, health plans
should also consider the impact of their decision on the safety
and well-being of unpaid caregivers such as family members who
may be called upon to assist a family member with functional limitations.
e) People with disabilities should be afforded an
appeal and grievance process that will enable them to challenge
decisions based on medical necessity.
f) A strong federal role, as opposed to a strong
state role, in defining medical necessity is needed because self-insured
organizations are exempt from state regulation under ERISA. Federal
leadership is needed in establishing the scientific evidence and
establishing consensus with regard to controversial interventions
and therapies where clear scientific evidence may be limited.
Demonstration Projects
9. Congress should authorize and fund demonstration
projects to test a variety of model primary care, fitness and wellness
strategies for people with disabilities, including those from minority
and low-income groups, that can be replicated in a variety of settings.
Demonstration projects should engage the participation
of medical rehabilitation providers, primary care providers, sports
medicine providers, health clubs and fitness centers, providers
of nontraditional complementary medicine, independent living centers,
and other provider and consumer entities knowledgeable about the
health care needs of people with disabilities.
Public Health
10. Congress should establish a focal point of leadership
within the Federal Government to define, implement and coordinate
a public health agenda for individuals with disabilities.
Such an agenda should promote access for people with
disabilities to mainstream public health services such as health
education, nutrition counseling, and smoking cessation programs
and should develop and implement targeted public health efforts
to address the specific health concerns of people with disabilities,
including those from minority and low-income groups. Prevention
of secondary disabilities should be a component of the agenda, as
well as primary prevention that does not demean or devalue people
with disabilities. The promotion of clean air and use of nontoxic
substances (such as industrial cleaners) in public places is of
particular concern to people with multiple chemical sensitivities
and should be addressed within the public health agenda.
Research
11. Congress should fund a comprehensive research program
on the efficacy of health services, health service delivery, and
financing issues facing people with disabilities, including those
related to the development of a more consumer-driven health care
system.
The research program should evaluate various capitation
and risk-sharing schemes and how they shape health plan and health
provider behavior and the health outcomes of people with disabilities.
It should develop quality indicators that are responsive to the
clinical and information needs of consumers with disabilities seeking
to make informed health plan and health provider choices. The efficacy
of managed care approaches that are targeted to people with specific
impairments or chronic health conditions should be studied. The
development of risk adjusters that can be used to adjust health
insurance premiums, provider payments, and quality of outcomes to
more accurately reflect the clinical needs of enrollees with disabilities
should be considered.
The incidence, prevalence, prevention and medical
management of secondary health conditions among people with disabilities
should be researched. New and existing interventions and strategies
to meet the health care needs of people with disabilities should
be studied in terms of their efficacy and cost-effectiveness. Practice
guidelines that address the ongoing health care needs of people
with disabilities should be developed. Prevention and health service
delivery strategies targeted to minority and low-income people with
disabilities should be developed. Model programs directed to meeting
the primary and ongoing health care needs of people with disabilities
should be evaluated and assessed for replicability. A health services
research capacity that responds to the health care issues of people
with disabilities should be developed.
Issues related to genetic screening should also be
a part of the research agenda. The ethical implications and quandaries
presented by new knowledge in genetic screening should be examined.
The interface of genetic testing practices with antidiscrimination
law and access to health insurance for people with disabilities
should also be studied.
Education and Training
12. The Federal Government and the private sector should
develop and implement education and training programs that will
sensitize health care providers to the ongoing health care needs
of people with disabilities, with the federal and state governments
awarding grants to help develop such model educational programs.
Such training should provide a better understanding
about the independent living needs and self-determination aspirations
of people with disabilities in order to minimize misinformation,
stereotyping and ignorance about disability. The training should
be largely the responsibility of medical schools, health professional
schools, professional and trade organizations, and health care providers.
A knowledge and understanding of disability-related issues should
be required for professional licensure and certification and for
provider accreditation.
13. The Federal Government and state governments should
provide training grants to consumer organizations, health care institutions
and educational organizations designed to enable people with disabilities
to become more informed consumers of health plans.
Such training should include ways to avert and manage
secondary health conditions, ways to make the most effective use
of health care services in a managed health care plan, ways to obtain
and use price and quality information in choosing a health care
plan when such information becomes available, and graduate level
training that will enable people with disabilities to become health
service researchers and assume leadership roles on health policy
issues that affect their lives.
Long-term
Services in the Community
...true freedom of expression...is about power,
to make clear our wants and opinions...to...control our health
and well-being...to lead a lifestyle of our own choice and direction....The
simple fact of the matter, however, is that millions of Americans
with varying disabilities of all ages still lack this fundamental
human power. Not because of their disabilities. But because they
lack access to personal assistance, assistive technology and other
ongoing supports....
Bob Williams
1994
I was sitting here crying, remembering when I
was a little teeny baby here in Dorm K. Now I'm happy Brandon
Training School is closing for good. I miss some of the people
from here and I'm happy to see them. But I don't want to be back
here. I don't ever want anyone to live here again--not even prisoners.
Cameron, a former resident of Brandon
Training School
(In Smith and Gettings 1994 p. 7)
I was in a nursing home for 13 years. I had to
fight to get out. It was the beginning of my life at 22.
Claude Holcomb
ADAPT Activist
People with disabilities often need long-term supports
and services in order to live independently. Long-term services
include personal assistance services to assist people with activities
of daily living, readers for individuals who are blind, interpreters
for people who are deaf, habilitation, rehabilitation, assistive
technology support and supported employment services. Historically,
many people with disabilities, particularly those with mental retardation
or mental illness, could access long-term services only if they
lived in institutional settings. Many people lived, and continue
to live, away from their families and communities in institutions
and nursing homes because the community-based long-term services
they needed were not available to them. NCD believes, and the Americans
with Disabilities Act (ADA) affirms, that every individual with
a disability should live in the community of his or her choice as
a participating member of society.
There is no nationally organized community-based system
of long-term services for people with disabilities. An individual
who needs long-term services must pursue them through a complex,
confusing and uncoordinated series of agencies and funding sources.
Most frequently the services are provided as a part of medical services.
Sometimes services are provided as a part of a supported living
setting. In both cases, the services may be restrictive, failing
to meet the full independent living needs of the consumer. Increasingly,
consumers are advocating for community services that address a range
of disabilities including mental illness, mental retardation and
physical impairments.
Current Status of Long-term Services
Approximately 12.7 million people need long-term services.
Of these, 2.4 million live in institutions such as nursing homes
and intermediate care facilities for the mentally retarded. The
majority of people who need long-term services are over age 65;
however, 2 percent are children and 40 percent are working-age adults
(American Association of Retired Persons [AARP] 1995). In 1991 America
spent about $59.9 billion on nursing home care and $9.8 billion
on home health care services. Medicaid paid $28.4 billion and Medicare
paid $2.7 billion of the nursing home bill. Public funding for home
health services, including Medicaid, Medicare and local governments,
accounted for $7.1 billion of the home health care expenditure (AARP
1994).
People with disabilities have actively pursued the
establishment of a national long-term services system, calling for
the redirection of funds from nursing homes and institutions to
community-based services. Disability organizations drafted personal
assistance services legislation and actively participated in the
health care reform debates of the early 1990s, crafting long-term
services provisions that were included in both President Clinton's
proposals and congressional proposals. Pressure to expand community-based
services is likely to continue as people with disabilities increasingly
move out of institutions into the community.
Current proposals to eliminate the federal entitlement
to Medicaid threaten the major source of funding for community-based
long-term services for approximately two million recipients with
disabilities. Devolution of responsibility for Medicaid to states
from the Federal Government is of great concern to people with disabilities
who rely on Medicaid as the major source of funding for long-term
services.
Personal Assistance Services
People who need personal assistance services have
substantially lower personal incomes and are less likely to be employed
than the general population. There is no private insurance coverage
for long-term personal assistance services. Among personal assistance
services users living in the community, 10 percent use paid services
only; 11 percent use both paid and volunteer services; and 79 percent
use volunteer or informal services only (World Institute on Disability
and Rutgers University Bureau of Economic Research 1990).
A 1987 survey of attendant services in the United
States concluded that such services are "fragmented, lack coordination,
are usually medically oriented and burdened with work disincentives,
are inequitably distributed across the United States and are most
often delivered by personal assistants who are poorly paid" (Litvak,
Heumann and Zukas 1987). Approximately two million people received
some or all personal assistance services from public programs in
1988, with Medicaid and the Social Service block grants serving
as the key federal sources of funding. Some personal assistance
services programs are solely state funded (Litvak 1991a).
The Personal Care Option under Medicaid was used by
23 states in 1988 to provide personal assistance services. These
programs have been criticized for being overly expensive, medically
oriented, not allowing personal assistance services outside the
home and allowing little consumer control or management of services
(Litvak 1991a). However, Medicaid is the main funding source for
long-term services for people with disabilities. NCD is concerned
about proposals currently under consideration that might eliminate
or curtail the federal Medicaid entitlement. Under current proposals,
states may or may not choose to provide long-term community-based
services to people with disabilities. Without Medicaid's support
for long-term community-based services, people with disabilities
would be at risk for institutionalization.
Deinstitutionalization
For the first time in history, more Americans with
developmental disabilities (mental retardation and other significant
impairments that require extended and multiple services) live in
publicly supported community residences than in publicly supported
congregate-care institutional settings. The institutional census
peaked at 195,000 in 1967 and has diminished steadily since that
time. Between 1988 and 1992, the population in institutions dropped
from 91,000 to 78,000. Of the 347,000 individuals with developmental
disabilities living in residential settings lived in 1992, 52 percent
lived in settings with 15 or fewer residents. By contrast, in 1977
only 14 percent of people with developmental disabilities who lived
in residential settings lived in settings with 15 or fewer residents
(Braddock et al. 1995). The number of individuals with mental retardation
residing in nursing homes has also declined, from 50,000 to 41,000,
between 1988 and 1992 (Braddock et al. 1995).
Large institutions around the country began closing
in the 1980s. A 1995 study determined that 94 institutions were
scheduled to close or had closed in 29 states (Braddock et al. 1995).
Since 1992 three states (New Hampshire, Vermont and Rhode Island)
and the District of Columbia have completed closure of all institutions.
The declining census, in conjunction with a leveling budget, has
caused escalating per diems in institutions. Between 1988 and 1992
per diems rose from $154 to $212, ranging in various states from
$124 to $435 (Braddock et al. 1995).
In 1989, for the first time in the nation's history,
the amount of public funds supporting people with developmental
disabilities in community settings exceeded the amount of funds
allocated for institutions and other settings with 16 more beds.
In 1992, 57 percent of funding was supporting individuals in community
settings with 15 or fewer beds (Braddock et al. 1995).
Historically, the primary source of federal funding
for services for people with developmental disabilities has been
the Medicaid Intermediate Care Facilities for People with Mental
Retardation (ICF/MR) program. Because the program has been so heavily
biased toward institutional care, advocates urged Congress to enact
a Home and Community-based Waiver (HCBW) provision in 1981. This
provision allows states to redirect institutional funds to community
programming. Participation in the program has increased steadily
since 1981; 49 states currently participate. In 1995, for the first
time, more individuals with developmental disabilities will be served
under the HCBW (approximately 155,000) than under the ICF/MR program
(Smith and Gettings 1994).
In 1990, Medicaid amendments were adopted that authorized
Community supported living arrangements, promoting individualized
support services for people with developmental disabilities as they
designed their own living situations. Eight pilot states participated
in this program, serving about 3500 individuals; state and federal
expenditures were projected to be $60 million by the end of the
program (Prouty and Lakin 1995). Almost 75 percent of participants
were supported living in their own homes. As the program terminated
in the fall of 1995, it left an important legacy in most states,
having planted "seeds" of supported living through out the country.
These seeds will likely promote supported living approaches throughout
the state service system (Braddock et al. 1995).
Since the 1960s, people with mental illness have increasingly
left institutional settings. However, the funding has rarely followed
them to support community services. Many people who once resided
in institutions have become homeless. The results of the deinstitutionalization
movement are controversial, with some organizations calling for
easier access to hospital-based treatment.
Despite the substantial progress, challenges remain.
Thousands of individuals continue to live in large institutions
and nursing homes when they could live in smaller community settings.
Too many people with mental illness remain unserved or underserved
in the community. States vary dramatically in their use of institutional
services and in the amount of money they spend on alternative services.
Key Legislation in the Past Decade
The Medicaid Home and Community-based
Waiver Program, Section 1915 (c) of the Social Security Act of 1981
(amended in 1986, 1987, 1988 and 1990), enables states to
target a population of long-term care recipients to receive home
and community-based alternatives to institutional care.
The Older Americans Act Amendments
of 1987 (P.L. 100-175) authorize funds for state and community
programs including nonmedical in-home services for the frail elderly
such as homemaker and home health aides, chore services, in-home
respite care, adult day care and minor modifications of homes (not
to exceed $150 per person).
The 1990 Medicaid Amendment authorizing
Community Supported Living Arrangements (P.L. 101-508) stresses
individualized support rather than the standardized services common
to the ICF/MR program.
Recommendations
While there has been considerable progress in deinstitutionalization,
much remains to be done to build an effective long-term services
system in the community. Ongoing biases toward providing services
in institutional settings inhibit the continued development of such
a system. People with disabilities continue to face a complex maze
of fragmented services that are inconsistent from one locality to
another and are too often directed by agencies rather than by people
with disabilities who are using the services. NCD's recommendations
provide the framework for a new system, a mechanism for its financing
and a transition strategy for achieving it.
National Long-Term Services and Supports Policy
1. Congress should enact legislation that establishes
a national long-term services and supports policy and unifies existing
fragmented funding and services to establish a Long-Term Services
System. The new system should be consumer driven, provide a range
of home and community-based services, offer personal assistance
services as the core service, and provide both ongoing and episodic
basis services. The legislation should include the following elements:
a) a reversal of the institutional bias in Titles
XVIII and XIX of the Social Security Act (Medicaid) so that home
and community are the expected service settings and institutions
are the last resort;
b) personal assistance services grounded in the values
of consumer choice, consumer direction, and community participation,
accommodating needs that change over time;
c) mechanisms to ensure access to long-term services
by those who, because of their disabilities, are unable to make
their own decisions;
d) consumer direction in selecting, managing, training
and dismissing personal assistance services workers regardless
of the employer of record;
e) amendments to the tax code that promote maximum
consumer direction in personal assistance services;
f) a range of management and payment models including
direct pay, vouchers and consumer-directed agency provision;
g) elimination of legal and regulatory barriers to
the maintenance of dignity and independence of people with significant
disabilities, including inappropriate medicalization of routine
procedures;
h) funding of demonstration projects that test innovative
approaches that honor the intent and spirit of ADA;
i) elimination of legal and regulatory barriers to
the provision of functional supports that promote independence
and inclusion;
j) establishment of a functional needs assessment
instrument that assesses the person's functional capabilities
in relation to the support in his or her living environment in
order to determine the level of need for personal assistance services;
Individual need must take into account the individual's's
environment. For example, a person with quadriplegia who lives in
an accessible house, has appropriate assistive technology, including
a lift-equipped van which the individual drives, and has a support
system of family and friends is likely to have fewer personal assistance
needs than a person with less significant disabilities who lives
in an inaccessible house, has no assistive technology, does not
drive and has no informal or family support system in place.
k) a study of how long-term community services might
be demedicalized, directed by the Secretary of Health and Human
Services (HHS) with the participation of people with disabilities
and national medical and allied health organizations such as the
American Medical Association and the American Nursing Association;
l) a requirement for consumer-directed oversight
of a services system plan submitted to HHS by states that involves
consumer participation in the development of the plan; a record
of consumer comments, consumer participation in the design and
evaluation of services; the rights of consumers to sign off on,
refuse or approve a plan of services and ongoing assessment of
the performance and efficiency of administering agencies;
m) ongoing training of consumers and providers that
promotes meaningful consumer direction and evaluation.
Financing
2. Congress should amend the current Medicaid law and
other relevant laws to establish a priority for home and community
services and to establish that, for all Medicaid and other public
funds, institutions are the placement of last resort. Provisions
in the legislation should include
a) a combination of funds for institutional and community
services;
b) an attachment of funding to individuals rather
than providers so that the funds follow the person, not the service
or the setting;
c) empowerment of people with disabilities and their
families to decide how funds are allocated across available services;
d) assurances that providers of personal assistance
services will receive wages and benefits commensurate with jobs
of comparable skill and effort in the community;
e) the establishment of a task force to continue
to study the financing of long-term services, which must include
a majority of people with disabilities who use long-term services.
The Federal Role and the State Role
3. Congress should ensure that the federal role and
the state role are clearly delineated in the provision of long-term
services and supports. The federal role should include
a) integrating fragmented programs and funding streams
into one organizational structure;
b) defining eligibility and basic scope of services
with guidelines for implementation within one year;
c) appointing a consumer/user group to codevelop
definitions of eligibility and scope of services.
The state role should include
a) mirroring the federal structure of integrating
funding streams and programs;
b) developing a state plan of action with significant
participation by users of long-term services;
c) reporting regularly on compliance with eligibility
guidelines and scope of services;
d) ensuring that users have the right to decide on
services and who provides them;
e) developing guidelines for consumer and worker
protection;
f) developing administrative procedures.
Transition to New Long-Term Services and Supports
Policy System
4. Congress should mandate a transition team in each
state to ensure a smooth transition from an institutional/medical
model to a home- and community-based consumer-directed model. These
teams should
a) play an active role in developing policy for new
systems, reporting to state and federal policy makers and monitoring
any pilot programs;
b) coordinate and integrate efforts with existing
Developmental Disabilities Planning Councils and Statewide Independent
Living Councils;
c) consist of members appointed by the governor for
five years, with a composition of 51 percent users of long-term
services or representatives of such individuals, reflecting the
minority and urban/rural demographics of the population, including
Native Americans; representatives from the lead state Medicaid
agency; representatives from the state department of labor; representatives
from the nonprofit community; representatives from Statewide Independent
Living Councils; representatives from organizations representing
older Americans such as the American Association of Retired Persons;
members of both legislative bodies from both political parties;
and one team member who attends a national body that monitors
activities and innovation in all states;
d) maintain a central registry on current pilot programs,
including complaints and positive feedback;
e) develop policy guidelines to be used by state
agencies, providers, health maintenance organizations and managed
care organizations;
f) develop a time line for deinstitutionalization
in the first year and monitor its implementation;
g) work with the state department of labor and JOBS
programs to develop personal assistance services worker capacity;
h) develop draft regulations for both a direct pay/voucher
model and a consumer-directed agency model;
i) determine whether individuals will use vouchers
or agencies and ensure that resource allocations are based on
these determinations;
k) holding statewide hearings to gather input from
the broad cross-disability community.
Demedicalization of Services
5. Congress should direct the Secretary of HHS to develop
a national policy which recognizes that disability does not necessarily
connote illness or incompetence or the need for medically controlled
services.
In the case of people with psychiatric disabilities,
generic community services (e.g., housing, vocational training)
should not be linked to compliance with "treatment plans." Personal
freedom should be the benchmark of all community programs.
This policy must distinguish between acute and chronic
conditions and recognize that acute needs for some are chronic conditions
for others that should be approached as activities of daily living.
Nonmedical assistants can and should perform many procedures that
are currently considered to be medical and thus are allowed to be
performed only by medical professionals. Laws in many states, such
as nursing practice laws, prohibit the performance of many procedures
by laypersons, thus unnecessarily increasing the costs of personal
assistance services. Such laws will need to be amended.
Research and Data Collection
6. Congress should direct the National Institute on
Disability and Rehabilitation Research and other relevant research
and data collection agencies to establish a research agenda and
data collection efforts with the following features:
a) a focus on priorities and perspectives of people
with disabilities, including those who are consumers of the services
being studied;
b) use designs and methodologies that include people
with disabilities in all aspects of the research and data collection
processes, such as participatory action research;
c) a focus on data related to the interaction between
the individual with a disability and the individual's particular
environment, including data on the person's physical, mental and
emotional levels of functioning,;
d) a focus on data related to consumer satisfaction;
e) a focus on understanding the effects of racial,
ethnic and gender characteristics in relation to various service
models;
f) a focus on family structures, living arrangements
and isolation as these factors relate to functional needs;
g) a study of the impact of gender inequities in
long-term services in the public and private sectors;
h) use of longitudinal studies;
i) an emphasis on cross-disability issues, functional
issues and environmental issues as they relate to the need for
personal assistance services.
Technology
The disability access provisions in the Telecommunications
Act of 1996 mark a high point in legislative advocacy for the
disabled community....Universal design enhances the marketability
of a new product or service.
Deborah Kaplan
1995
If we rely solely on market forces to drive the
communications revolution, then people with disabilities will
be disenfranchised in the communications revolution. Americans
with disabilities then would be denied the basic tools necessary
in the Information Age to get an education, to get a job, to share
in our cultural experience, to be part of politics, to communicate.
Reed E. Hundt, Chairman
Federal Communications Commission
June 28, 1995
All Americans regularly and increasingly rely on technology
to enhance functioning and to perform routine tasks. From eyeglasses
to telephones to remote controls for televisions, the daily lives
of Americans are significantly shaped by technological innovation.
Over time, as the novel becomes the ordinary, the provision and
cost of such technology becomes standard fare in American business
and culture. Historically, technological progress has yielded both
benefits and barriers for people with disabilities. Developed in
an effort to enhance communication for people who are deaf, the
telephone ironically served to isolate people who are deaf for many
decades. To the extent that technological innovation proceeds in
an accessible fashion, it holds great promise for people with disabilities.
Recent rapid and potent advances in technology have
developed the potential for a level of independence and productivity
for individuals with disabilities that was once only dreamed of.
Augmentative communication devices, almost unheard of only a decade
ago, enable people without speech to program and activate computers
to speak for them. Voice-activated computers enable people with
limited motor capacity to write books. Assistive listening devices
enable individuals who are hard of hearing to hear within the average
range. With the enactment of the Americans with Disabilities Act
(ADA), telecommunications relay services provide 24-hour access
to the telephone for people who are deaf or hearing impaired. Television
decoders and descriptive video services bring television to people
with hearing and visual impairments. Assistive listening devices
and descriptive video services have increased the accessibility
of movies and the performing arts for patrons with disabilities.
The development of the National Information Infrastructure
(NII), or "information superhighway," holds great promise for people
with disabilities. All of these technological developments have
the potential to significantly increase the employment rate of people
with disabilities and to enhance educational opportunities.
Advances in telecommunications in the last decade
have already had considerable impact on people with disabilities.
A decade ago the term "E-mail" was virtually unheard of. For people
with disabilities who can afford and use the technology, E-mail
offers enhanced communication and increased access to information.
A decade ago working at home was an oddity. The expansion of telecommunications
options, including fax machines and E-mail, makes telecommuting
more and more of a trend. For a person with a mobility impairment
or a person with a disability in a rural area, technology can enable
increased participation in the mainstream of American life.
Access to Assistive Technology
In 1990, the National Institute on Disability and
Rehabilitation Research and the National Center for Health Statistics
cosponsored a survey on assistive technology devices and homes with
accessible features as part of the National Health Interview Survey
of 1990. The survey found that more than 13.1 million Americans,
about 5.3 percent of the population, were using assistive technology
devices. Mobility devices were the most frequently used type of
assistive technology, used by 6.4 million people. Hearing aids were
used by 3.8 million people, walkers by 1.7 million people, wheelchairs
by 1.4 million people and back braces by 1.2 million people (LaPlante
1995a).
While the right assistive technology can make a monumental
difference in the life of a person with a disability, many people
who need the technology remain frustrated by persistent barriers
in gaining access to the products and devices yielded by scientific
research and development in a timely and usable manner. Advances
in science and research simply are rarely readily available to people
with disabilities. Barriers include limited dissemination of information
about what technology is available and how to locate it and lack
of third-party reimbursement or funding to purchase or utilize the
technology (NCD March 4, 1994).
In addition, many assistive technology services are
not consumer responsive. While the 1988 Technology Related Assistance
for Individuals with Disabilities Act defines and requires consumer-responsive
systems, barriers to implementation abound (Galvin 1995). People
with disabilities have not yet been fully empowered to determine
their service needs.
ADA should increase the availability of assistive
technology for people with disabilities. The reasonable accommodation
requirement may involve the purchase of equipment or devices by
employers. Places of public accommodation are providing auxiliary
aids and services which may involve assistive technology. For example,
hotels are purchasing telecommunication devices for the deaf and
television decoders for hearing-impaired guests. Libraries and schools
are purchasing reading machines and other devices to allow blind
people access to printed material.
The National Information Infrastructure
The development of NII has the potential to level
the playing field in many areas of life for people with disabilities.
It also has the potential to create new barriers to full participation
if it is not developed to be accessible to and usable by people
with disabilities. Potential advantages include increased access
to information, increased communication with others, decreased personal
isolation and increased opportunities to participate in distance
learning, do shopping and receive medical services (NCD 1996).
Potential barriers to NII include socioeconomic barriers
and the high levels of skill required to utilize complex information
technologies. While these barriers are present for many Americans,
they may disproportionately affect people with disabilities who
are poorer than the general public and less educated. Graphic user
interfaces and touchscreen kiosks and products present barriers
to people who are visually impaired or blind (NCD 1996).
Universal Design
People in the disability community have been articulating
and promoting the notion of "universal design" for over a decade.
This notion refers to designing buildings, transportation, technology,
etc., so that it is usable by people with a range of abilities and
disabilities. Such design offers accessibility to individuals with
disabilities, but also to others. For example, a voice-activated
computer may be used by individuals who want to avoid the risk of
carpal tunnel syndrome or who simply prefer voice input.
When applied to NII, the notion implies access to
newly emerging and developing technologies for people with disabilities.
Because development in this area is so rapid, it has been difficult
for third-party vendors to create access technologies to keep up
with new information technologies (NCD 1996). However, some recent
progress is evident. For the last year, NCD has worked with the
Microsoft Corporation on ensuring accessibility of Microsoft's new
products and technologies. The company has committed itself to addressing
the needs of people with disabilities during all phases of product
planning, development and support. The disability community has
worked with Congress and representatives from the telecommunications
industry over the last four years to ensure that telecommunications
deregulation legislation will include disability access safeguards.
The challenge for the future will be to continue to
promote universal design by seeking wide acceptance in the industry.
Key Legislation in the Past Decade
The Technology Related Assistance
for Individuals with Disabilities Act of 1988 (P.L. 100-407) amended
in 1994 (P.L. 103-218) (the Tech Act) supports state efforts
to implement consumer-responsive, comprehensive, statewide programs
of technology-related assistance, including technology centers,
for individuals with disabilities of all ages.
The Americans with Disabilities
Act of 1990 (P.L. 101-336) requires the establishment of
telecommunications relay systems within every state and across states
so that people who are deaf and hard of hearing have equal access
to the telephone.
The Television Decoder Circuitry
Act of 1990 (P.L. 101-431) requires new television sets with
screens 13 inches or larger to have built-in decoder circuitry in
order to display closed-captioned television transmissions for people
who are deaf or hard of hearing. The legislation became effective
July 1, 1993. This legislation will have the effect of phasing in
increased accessibility to television over time.
The Telecommunications Act of 1996
(P.L. 104-104) requires telecommunications manufacturers
and service providers to ensure that equipment is designed, developed
and fabricated to be accessible to and usable by individuals with
disabilities, if this is readily achievable. Closed captioning is
required when it is readily achievable.
Recommendations
Universal Design
1. The President, the Congress and the private sector
should develop initiatives to promote universal design through a
combination of incentives, legislation, enforcement and research,
including
a) developing a research agenda on universal design
that includes market research, design research, research to develop
guidelines and standards and descriptive research (e.g., the history
of the use of technology, the type of technology used, the level
of durability);
b) establishing a Universal Design Award, modeled
on the Baldrige Award for Innovation in Business, that would recognize
outstanding innovation in the development, design or production
of technology that is particularly effective in meeting the needs
of people with disabilities;
c) enacting a universal design statute or a new title
to the Rehabilitation Act that would 1) promote the creation of
more universally designed/accessible products, systems, practices
and environments leading to enhanced employment of people with
disabilities; 2) support research funding for interested industries,
3) establish an information clearinghouse; 4) gather data on the
need for and use of accessibly designed products, systems, practices
and environments and assistive technology; and 5) provide technical
assistance to industry by developing a universal design support
network modeled after the Job Accommodation Network;
d) establishing functional standards for accessible/universal
design beyond telecommunications, including 1) incorporating captioning
and audio description standards into audiovisual technologies;
2) encouraging development of telecommunication equipment standards
that include the ability to present information in (at the user's
option) audio, text or video and that are compatible with assistive
technology add-ons; and 3) addressing copyright concerns without
limiting the ability to add captions or descriptions;
e) charging or creating an interagency committee
with addressing how different agencies can promote universal design,
including consideration of 1) strengthening government purchasing
policies, including Section 508 of the Rehabilitation Act, to
give preference in purchasing to universally designed products
and 2) requiring a disability impact statement in all proposals
responding to requests for proposals for federal research and
demonstration funds and establishing increased accessibility for
people with disabilities as a criterion for funding;
f) creating tax incentives for Universal Design including
a tax credit for companies engaged in basic research and development
in universal design.
Assistive Technology Research and Development
2. Congress and the President should promote continued
research and development of assistive technology and assistive technology
services by
a) mandating and conducting a feasibility study regarding
the creation of universally designed technologies that would be
usable by individuals with multiple disabilities and effective
in a broad range of environments;
b) supporting research to develop assistive technology
to address new and emerging audiovisual information, devices,
and systems, such as research on converting information into digital
presentation-independent (sensory modality- independent) form;
c) supporting research to develop assistive technology
to address new and emerging gestural/manipulative devices and
systems;
d) supporting research to improve existing types
of assistive technology, including the incorporation of new technologies
and knowledge;
e) supporting consumer involvement in product design
and testing activities;
f) broadening the funding support for these activities
beyond the Department of Education to other federal agencies.
Incentives to Business and Industry
3. Congress and the President should develop a range
of initiatives that offer incentives to business and industry to
develop and utilize assistive technology and accessible technology,
including
a) tax credits and deductions for entities that undertake
housing and building construction and modification that incorporates
accessible design, innovative facilities that transcend minimal
accessible design requirements, and acquisition and maintenance
of assistive technology for people with disabilities;
b) expanded tax credits and deductions now allowable
under the access credit for compliance with ADA;
c) incentives for insurance carriers that cover the
acquisition and maintenance of assistive technology for people
with disabilities;
d) incentives to industry and business for donations
of assistive technology to people with disabilities;
e) incentives to developers and manufacturers of
universally designed products that meet established universal
design functional standards.
Affordability
4. Congress and the President should develop a range
of initiatives to enhance the affordability of assistive technology
and accessible technology for people with disabilities, including
a) personal tax credits or deductions for individual
expenses incurred in purchasing or maintaining assistive technology;
b) expanded coverage for durable medical equipment
and all assistive technology through Medicaid, Medicare, private
health insurance and eventually through universal health care;
c) widely disseminated studies of results of projects
funded by the Tech Act that resulted in increased funding for
or better delivery of assistive technology to people with disabilities
who are poor or institutionalized;
d) an expanded universal service fund under the Telecommunications
Act to include telecommunications-related assistive technology
for people with disabilities;
e) a revolving low-interest long-term assistive technology
loan fund designed to facilitate access to assistive technology
for consumers for whom such technology would otherwise be unaffordable.
Strengthening and Enforcing Existing Laws
5. Congress should strengthen existing laws and the
administration should undertake stronger enforcement of existing
laws, regulations and policies that address assistive technologies
and universal/accessible design, including
a) extending Section 508 of the Rehabilitation Act
beyond the Federal Government to ensure availability of accessible
technology for people with disabilities who are employed in the
private sector;
b) increasing funding for enforcement;
c) amending relevant laws to strengthen the standard
of access ("readily achievable") so that total access will be
achieved.
Information Dissemination
6. Congress and the Federal Government should promote
a range of activities intended to further disseminate information
about accessible/assistive technology.
Public libraries should be urged to offer a range
of information related to accessible/assistive technology, including
information about services and funding resources for people with
disabilities. This information should be in accessible formats as
required by Section 504 of the Rehabilitation Act and Titles II
and III of ADA. It should involve the establishment of universal
key words relating to assistive technology as a discrete item in
various library, professional and other research indices as well
as World Wide Web indices.
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