UNDERSTANDING DISABILITIES IN AMERICAN INDIAN AND ALASKA NATIVE COMMUNITIES:
TOOLKIT GUIDE August 1, 2003
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
This
report is also available in alternative formats and on NCD's award-winning
Web site at www.ncd.gov
Publication date: August 1, 2003
202-272-2004
Voice
202-272-2074 TTY
202-272-2022 Fax
The views contained in this report do not necessarily
represent those of the Administration as this and all NCD reports
are not subject to the A-19 Executive Branch review process.
About the Cover
The four symbols on the cover of the Toolkit
Guide were chosen to represent the spectrum of disabilities, whether
visible or hidden, that may be experienced by individuals in the American
Indian and Alaska Native community. The universal meaning of each
symbol is described in the captions below along with the meaning of
the symbol as it is used in this Toolkit specifically. Access
for People Who Are Blind or Have Low Vision (blind with cane)
Universally, this symbol identifies areas that are
specifically designed to be accessible to or in some cases tailored
to the unique abilities of individuals who are blind or have low
vision. Within the Toolkit, this symbol is used to represent the
community of individuals for whom sight is not a primary sensory
tool.
Mobility Access Symbol (wheelchair)
The wheelchair symbol indicates access for individuals
who have a mobility disability, including individuals who use wheelchairs.
The symbol is most commonly used to indicate an accessible entrance,
bathroom, or environment that is sensitive to individuals with specific
mobility access needs. Within the Toolkit, this symbol is simply
used to represent the community of individuals with mobility needs
of this kind.
Communication Access for People Who Are Deaf or Hard
of Hearing (signing hands)
This symbol typically indicates that sign language
interpretation is provided for a lecture, tour, performance, conference,
or other program. Within the Toolkit, the symbol is used to represent
the community of individuals whose primary means of communication
is sign language.
Hidden Disabilities (face beneath face)
This symbol was designed specifically for the Toolkit
after the Technical Expert Panel determined that there were currently
only universal symbols for disabilities that are seen, leaving out
the experiences of individuals with epilepsy, developmental disabilities,
alcoholism, mental illness, learning difficulties, diabetes, and
others who are not represented by the universal disability symbols.
The symbol was inspired by the art of many indigenous cultures that
designed faces with multiple overlaid masks. This symbol represents
the community of individuals who have disabilities that are not
externally visible but significantly impact an individual's life.
Acknowledgments The National
Council on Disability's (NCD) Understanding Disabilities in American
Indian and Alaska Native Communities: Toolkit Guide was developed
through the passionate collaboration of many individuals. The foundation
of this project was formed in a powerful sharing of experiences,
knowledge, and hopes among consumers and advocates who live with
disabilities. These individuals strived to create a new perspective
about what it means to be an American Indian or an Alaska Native
with a disability. This new consciousness will serve to transform
Indian communities nationally and offer a new hope to so many individuals
who for so long have felt invisible with no voice.
NCD expresses its gratitude to the team at Kauffman
and Associates, Inc., for drafting this toolkit. Team members include
Project Director Dr. Martina Whelshula, Victor Paternoster, Tim
Spellman, Wendy Thompson, and Ara Walline.
Others who have greatly supported the development
of this work and deserve special acknowledgment are Mike Blatchford,
consultant; Kathy Langwell and Project HOPE; Desautel Hege Communications;
Robert Shuckahosee, consultant; Frank Ryan, consultant; the Consortia
of Administrators for Native American Rehabilitation (CANAR); the
American Indian Disability Technical Assistance Center; the American
Indian Rehabilitation Research Training Center; the National Congress
of American Indians (NCAI); focus group participants at NCAI and
CANAR conferences; and Judy Babbit from the City of San Antonio
Disability Access Office.
A special acknowledgment goes to those who represent
the heart and soul of this effort, our Technical Expert Panel members:
Mark Azure, Julie Anna Clay, Julia Davis-Wheeler, LaDonna Fowler,
Joanne Francis, Joseph Garcia, Cordia LaFontaine, Carol Locust,
Danny Lucero, David Miles, Damara Paris, Andrea Siow, H. Sally Smith,
Raho Williams, Alvin Windy Boy. Thanks also to Jessie Stewart, age
10, for sharing her story.
In attempts to understand the complex make-up of Indian
country as it addresses the needs of tribal members and descendants
with disabilities, tribal program directors shared willingly about
the challenges and inspirations experienced in their work. NCD acknowledges
these individuals and the tribes they represent: Jo White, Oglala
Nation at Pine Ridge; Arlene Templer, Confederated Salish and Kootenai
Tribes; Rita LaFrance, St. Regis Mohawk; Rhonda Talaswaima, Hopi
Nation; Darlene Finley, Three Affiliated Tribes; Linda Pratt, Yakama
Nation; Larry Alflen, Pueblo of the Zuni; Steven "Corky" West, Oneida
Nation; Ella Yazzie-King and Paula Seanez, Navajo Nation; and Len
Whitebear, Cook Inlet Tribal Council.
Technical Expert Panel Several
individuals representing consumers and advocates within the American
Indian and Alaska Native disability community nationwide were recommended
to serve as members of a national Technical Expert Panel. The Technical
Expert Panel served as project consultants and advisors providing
guidance to the staff on the direction of the project. The Panel
was instrumental in providing critical feedback and direction on
the multitude of issues addressed throughout the development of
this toolkit. The Technical Expert Panel members are as follows:
Mark Azure
Tsimshian/Hunkpapa Lakota
Intertribal Deaf Council
Consumer
Julie Anna Clay
Omaha Tribe
Training and Dissemination Coordinator
American Indian Rehabilitation Research and Training Center (AIRRTC)
Consumer
Julia Davis-Wheeler
Nez Perce
Nez Perce Tribal Council
Chair, National Indian Health Board
LaDonna Fowler
Turtle Mountain Chippewa/Santee Sioux/Assiniboine
Chairperson, Subcommittee on Disability, National Congress of American
Indians
Co-Founder, American Indian Rehabilitation Rights Organization of
Warriors (AIRROW)
National Board Member, AIRRTC
Secretary, Multicultural Committee, National Council on Independent
Living
Co-Secretary, Native American Alliance for Independent Living
Charter Member, Cultural Diversity Advisory Committee for National
Council on Disability
Native American Disability Consultant/Consumer
Joanne Francis
Akwesasne Mohawk
International Disability Consultant
Founding Member, AIRROW
Consumer
Joseph Garcia
Prairie Band of Potawatomi
Board Member - American Indian
Disability Technical Assistance Center<> Student, Salish Kootenai
College
Consumer
Cordia LaFontaine
Consumer
Carol Locust
Eastern Band Cherokee
Indian Health Services Health Consultant
Cultural Sensitivity Trainer & Consultant
Consumer
Danny Lucero
Navajo/Apache Nations
Vice President, Intertribal Deaf Council
Gallaudet University
Consumer
David Miles
Nez Perce Tribe
Director, Nez Perce Vocational Rehabilitation Services
Board Member for the Idaho State Independent Living Council
Board Member for the Idaho State Rehabilitation Council
Damara Paris
Cherokee
President, Intertribal Deaf Council
Consumer
Andrea Siow
Hopi Nation
Consumer
H. Sally Smith
Tribal Leader
Alaska Native Health Board
National Indian Health Board
Raho Williams
Navajo Nation
Independent Living Specialist
San Juan Center for Independence
Consumer
Alvin Windy Boy
Chippewa-Cree
Tribal Leader
Rocky Boy Reservation
Contents
Welcome to the Toolkit
How many Indians live on tribal lands?
Did you know at least 555,000 Indians live with disabilities?
What is a disability?
What disabilities do we find in Indian communities?
Barriers and Challenges
References
Healthy Living
Background
Health Care
Indian Health Service
Medicaid
Medicaid Home- and Community-Based Services (HCBS)
Medicare
State Children's Health Insurance Program (SCHIP)
Sports & Recreation
References
Education
Independent Living
Vocational Rehabilitation and Employment Resources
Assistive Technology
Background
Model Approaches
ASSIST! to Independence
Native American Advocacy Project (NAAP)
Resources
State Assistive Technology Financial Loan Programs
and Other Loan
Programs Serving Native Americans
General Assistive Technology Resources Available to Native Americans
Assistive Technology Advocacy
References
Housing and Facilities
Background
Barriers to Service
The Basics of Universal Design
Assessing Service Needs
Model Approaches
Making Plans a Reality
Frequently Asked Questions
References
Transportation
Background
Barriers to Service
Assessing Service Needs
Definitions
Model Approaches
Pueblo of the Zuni
Confederated Salish and Kootenai Tribes
Other Programs
Making Plans a Reality
Frequently Asked Questions
References
Key Elements of Promising Programs
Background
Leadership
Leadership Characteristics
Responsiveness to the Needs of the Consumer
Innovation in Removing Barriers
Effective Collaboration
Advocacy Strength
Support from Tribal Leadership
Conclusion
Advocating Change
Self-Advocacy
Self-Advocacy.What Is It?
Giving Voice to Your Life Choices
Speaking Up About Services
Step 1: Targeting
Step 2: Preparing
Step 3: Influencing
Step 4: Following Through
What Would You Do As a Self-Advocate?
GuidelinNational Initiatives, Federal Agencies, and National Organizations
153es for Writing a Resolution
Purpose of Submitting a Resolution
Resolution Format
Sample Resolutions
References
Federal Disability Laws and Tribes
Background
Understanding Government-to-Government Relationships
The Americans with Disabilities Act (ADA)
and Tribes
The Rehabilitation Act and Tribes
The Individuals with Disabilities Education Act (IDEA) and Tribes
Advocacy
References
Disability Etiquette Handbook
Dos and Don'ts
Conversation Etiquette
Glossary of Acceptable Terms
Preparing for Sign Language Interpreters
Resources Regarding Interpreters
Service Animals
What Is a Service Animal?
Service Animal Access
Service Animal Etiquette
Service Animal Resources
References
Welcome to the Toolkit A
powerful voice in Indian country has emerged, strongly pronouncing
that American Indian people with disabilities do not need to be
"cured" or "fixed." In truth, equal access, fair accommodations,
and an opportunity to make powerful contributions to our society
are needed.
By eliminating the barriers, American Indian and Alaska
Native (AI/AN) people with disabilities can work together in partnership
to make tribal communities more accessible, more caring, and more
representative of the beautiful, unique contributions each individual
brings to this world.
Indian people with disabilities and tribal leaders
who served together on a Technical Expert Panel for the National
Council on Disability (NCD) designed this Toolkit. They hope that
the information, encouragement, and resources found in this Toolkit
will help you and your community create the awareness, support,
encouragement, and empowerment to improve the lives of people with
disabilities and their families.
In this Toolkit, you will find information about disabilities,
Indian tribes, and resources. You will also find suggestions for
improving services, providing protections, and tapping resources
in local tribal communities for people with disabilities. This guide
will focus primarily on health care, independent living, education,
and vocational rehabilitation. In addition, resources are provided
in the areas of housing and transportation.
Each section of the Toolkit will provide specific
contact information by topic for organizations that may be of further
assistance to you. Where possible, the narrative describing each
organization's mission and role has been directly quoted from the
organization's Web site, and the Web site address has been identified
in order to provide the most accurate and useful information.
AI/AN people with disabilities, especially those who
live in Indian country, face unique circumstances and legal environments
that require special outreach, consultation, protections, and services.
There is a great desire among AI/AN people with disabilities to
work in partnership with sovereign tribal governments to make tribal
communities and work places accessible and welcoming to people with
disabilities.
How many Indians live on tribal lands?
According to the 2000 U.S. Census, nearly 2.5 million
Americans identify themselves exclusively as "American Indian or
Alaska Native." There are 4.1 million people who identify themselves
either as Indian only or Indian in combination with another race
(Ogunwole, 2002). Of this total, approximately 944,433 Indian or
Alaska Native people live on federal reservations or on off-reservation
trust lands (Langwell and Sutton, 2002). Of the 50 states, 35 have
federal reservations within or overlapping state borders.
The Federal Government, through the Bureau of Indian
Affairs (BIA), officially recognizes 560 tribes and Alaska Native
villages (Ogunwole, 2002). They are known as "Federally Recognized
Tribes."
Did you know at least 550,000 Indians live with disabilities?
Data from the 1997 Survey of Income and Program Participation
found that 22 percent of the American Indian and Alaska Native population
has one or more disabilities (McNeil, 2001). This is the highest
rate of disability when compared with all other races in the United
States. The rate of disability varies significantly by race:
| Race |
Percentage with Disabilities |
| U.S. all races |
20% |
| White |
20% |
| Black |
20% |
| Hispanic |
15% |
| Asian |
10% |
| American Indian |
22% |
If we consider only the 2.5 million who reported on
the 2000 census that they identify themselves exclusively as "American
Indian or Alaska Native," this means that at least 550,000 Indians
and Alaska Natives have disabilities.
What is a disability?
The Americans with Disabilities Act (ADA) defines
a disability as follows:
The term "disability" means, with respect to an
individual - (A) a physical or mental impairment that substantially
limits one or more of the major life activities of such individual;
(B) a record of such an impairment; or (C) being regarded as having
such an impairment (42 U.S.C. § 12101 et seq.).
Other, similar definitions are found in the Rehabilitation
Act and the Social Security Act. You may find that eligibility for
certain benefits, such as Social Security Income (SSI) for people
with disabilities, may require a more rigorous definition. For example,
the Social Security Act defines disability as follows:
...the term 'disability' means (A) inability to
engage in any substantial gainful activity by reason of any medically
determinable physical or mental impairment which can be expected
to result in death or has lasted or can be expected to last for
a continuous period of not less than 12 months, or (B) blindness
. (42 U.S.C. 416 § 216 [42 U.S.C. 416] (1)(1))
While definitions vary, nearly all these definitions
rely upon some measure of functional limitation to determine severity.
This is done using activities of daily living (ADL) or instrumental
activities of daily living (IADL).
ADL include eating, walking, using the toilet,
dressing, bathing, and getting in/out of bed.
IADL include cooking, shopping, managing
money, using a phone, doing light or heavy housework, and getting
out of the home.
Assessing the severity of a disability is done by
totaling the number of ADL or IADL experienced by an individual
(NRCNAA, 2002).
What disabilities do we find in Indian communities?
Every type of disability that is found in the general
population can also be found in the AI/AN population. Several small
studies have surveyed tribal communities to identify most frequent
types of disabilities. These studies (Clay, 1992; Rural Institute
on Disabilities, 1995; AIDLP, 2000) generally found that the following
types of disabilities are most often reported in Indian community
surveys:
- Spinal cord injury (see Vocational Rehabilitation
[VR] section for more information)
- Diabetes complications
- Blindness
- Mobility disability
- Traumatic brain injury (see VR section for more
information)
- Deafness or hardness of hearing
- Orthopedic conditions
- Arthralgia
- Emotional or mental health conditions (see VR
section for more information)
- Learning disabilities
- Alcoholism or drug dependence (see VR section
for more information)
Not all disabilities are easily seen or can be seen
at all. Many individuals have hidden or unseen disabilities, such
as emotional or mental health problems, learning disabilities, alcohol/drug
dependence, or deafness. Some people are born with their disability,
or develop the disability early in life. Other people acquire their
disability later in life as a result of disease, age, or injury.
If we live long enough, we will each experience life
with a disability.
Barriers and Challenges Attitude:
Most nondisabled people do not understand people with disabilities.
Too often we see the disability and not the person. This is also
true in our AI/AN communities. You can help change this!
Lack of Awareness: There
is a lack of understanding about the number of Indians with disabilities,
the types of disabilities in Indian communities, and the various
opportunities our tribal government and service programs have to
better protect and assist people with disabilities in Indian country.
Legal Enforcement Unclear:
Federal laws designed to protect people with disabilities are not
always enforceable against tribal governments because of the sovereign
immunity and sovereign status of tribal governments. This does not
mean that all enterprises located on tribal lands are exempt from
federal laws, only that tribal governments are unique. Many tribes
have opted to adopt their own ordinances and codes to protect Indian
people with disabilities within the tribal system.
Rural Transportation: Most
tribal lands are located in rural and remote areas of the United
States and lack public transportation systems, which could provide
people with disabilities with access to transportation and increased
independence.
Rural Infrastructure: Tribal
communities may not have the infrastructure to support access and
accommodation for people with disabilities, such as sidewalks and
sidewalk ramps for wheelchair access. Tribal communities may lack
access to high-speed Internet or the means to acquire assistive
technology for people with disabilities.
Public Access: Tribal and
federal office buildings that serve the community are not always
accessible for people with disabilities. Some tribes may lack the
resources to retrofit their buildings to accommodate people with
disabilities.
Complex Federal Programs:
There are a variety of federal and state programs that can be important
resources for people with disabilities on tribal lands. These programs
may have overlapping or conflicting responsibilities and must be
navigated with dogged determination. Don't take "no" for an answer.
State Relationships: Relationships
between tribes and states can be strained because of overlapping
or conflicting jurisdictions and other issues. States may offer
many services and programs that can be helpful for people with disabilities
and their families living in Indian country. It is important to
remember that while tribes are sovereign governments, their members
are also citizens of the state and of the United States and are
entitled to access state programs.
Education Systems: The majority
of AI/AN children are educated through the public school systems
in each state. The balance of Indian children are educated in tribally
operated schools or federal schools run by BIA. As a result, a variety
of entities may have some level of responsibility for children with
disabilities in our schools (Pavel, 1995). The Individuals with
Disabilities Education Act (IDEA) requires public schools and BIA
to provide children with disabilities with a free appropriate education
based upon an Individualized Education Program for each child. This
is the law. Parents of Indian children with disabilities may not
be aware of the services and support their children are entitled
to receive and may not know how to advocate for their children effectively.
Employment: Federally
recognized Indian tribes are specifically exempt as employers under
Title I of ADA, which prohibits discrimination against qualified
individuals with disabilities in employment and requires that employers
make reasonable accommodation for employees with disabilities (42
U.S.C. §§ 12101 et seq.). This exemption is a barrier for Indians
with disabilities in Indian country, particularly in rural areas
where tribal governments are the largest employer. Some tribal governments
have voluntarily complied with ADA or adopted their own codes to
protect people with disabilities from employment discrimination.
Housing: Homes are not generally
designed to meet the needs of people with disabilities. There is
limited funding at the tribal level to cover the cost of retrofitting
tribal or private housing. This housing barrier can mean the difference
between an individual with disabilities living independently or
living under the care of others. Every home should have some means
for "visitability" for people with disabilities.
Service Coordination and Advocacy:
Indian people with disabilities do not always have a central location
where services are coordinated within tribal settings. This can
present a major barrier, particularly for individuals with disabilities
who have multiple needs, such as housing, health care, vocational
rehabilitation, and advocacy.
Personal Care Assistance:
Just getting out of bed, bathed, dressed, and out of the house could
present major barriers for some people with disabilities. Yet, with
the support of a personal care attendant, many people with disabilities
have been able to demonstrate their value as members of the tribal
workforce. Much more can be done in Indian communities to provide
home- and community-based services.
References American Indian
Disability Legislation Project (AIDLP) Research and Training Center
on Rural Rehabilitation Rural Institute on Disabilities. (2000).
Missoula: University of Montana Rural Institute.
Clay, Julie. (1992). A profile of independent living
services for American Indians with disabilities living on reservations.
Missoula: University of Montana Rural Institute.
Langwell, Kathy, and Janet Sutton. (2002). People
with disabilities on tribal lands: Education, health, rehabilitation,
and independent living literature review. Washington, DC: National
Council on Disability.
McNeil, J. (2001). Americans with Disabilities 1997.
Current Population Reports: U.S. Census Bureau.
National Center for the Dissemination of Disability
Research (NCDDR). (1999). A review of the literature on topics related
to increasing the utilization of rehabilitation research outcomes
among diverse consumer groups. Retrieved November 4, 2002, from
www.ncddr.org/du/products/dddreview/toc.html.
National Resource Center on Native American Aging
(NRCNAA). (2002). Functional Limitations and the Future Needs
for Long Term Care. Grand Forks: University of North Dakota.
Ogunwole, Stella U. (2002). The American Indian and
Alaska Native population: 2000. Census 2000 Brief: U.S. Census
Bureau, 1.
Pavel, D. Michael. (1995). Comparing BIA and tribal
schools with public schools: A look at the year 1990-91. Journal
of American Indian Education 35(1).
Rural Institute on Disabilities. (1995). American
Indians and Disability. Rural Facts, 2.
Healthy Living Background
Healthy living expands the scope of health care by
integrating a wellness approach, including sport and recreation
activities. Wellness involves the mind, body, spirit, and context
of the individual. Many Native American cultures emphasize harmony
between mind, body, spirit, and one's relationship with one's community
and the environment. In this way, today's health and wellness model
may be highly compatible with the values of tribal members with
disabilities.
Today's wellness model focuses on the optimal functioning
of individuals regardless of disability or health status. Wellness
spans a continuum that is unique to each individual and his or her
context-a context composed of environmental factors such as culture,
community, family, social networks, social history, and physical
environment. More specifically, health and wellness may be measured
in the following ways: the ability to function and have the option
to do what one wishes; being independent and having self-determination
with regard to choices, opportunities, and activities; having physical
and emotional states of well-being; and not being held back by pain.
Individual factors relating to health and wellness are
- Pain management
- Rest
- Exercise
- Nutrition
- Weight
- Skin care
- Medication
- Bodily functioning
- Sexuality
- Aging
- Attitude
- Identity
- Beliefs
- Self-determination
- Social contribution
- Consumer knowledge
- Personal growth and development
- Health management
- Social support
- Employment
- School
- Accessibility accommodation
- Personal assistant services
- Housing
- Transportation
- Knowledge and sensitivity of others, including
health care providers
- Alternative/complementary medicine
Thus, individuals define their own wellness, which
is based on individual circumstances and viewed holistically (ILRU,
2002).
The following section will describe the health or
medical care support available for individuals with disabilities
living in Indian country as well as provide an overview of the recreation
and sport opportunities that also exist.
Health Care
People with disabilities depend upon health care systems
to provide high-quality health services in accessible and appropriate
settings. All Indian Health Service (IHS) and tribal health care
facilities should be accessible for patients with mobility, sensory,
or cognitive disabilities. Patients with hearing and visual disabilities
should be able to access and communicate with their health care
provider systems. Ramps, doorways, exam rooms, and restrooms must
be accessible. Staff should be trained and prepared to effectively
serve people with disabilities in the clinic.
IHS and tribal health care providers should review
their health care system to ensure that the challenges faced by
many Indians with disabilities are addressed and considered.
Resources to meet the health care needs of Indians
with disabilities are available through several existing programs.
These programs are described below. Many of these programs can be
used in combination with each other to provide an array of services
most beneficial for the patient.
IHS and tribal health care programs can seek certification
to bill for many services paid for by Medicaid, Medicare, or State
Children's Health Insurance Program (SCHIP) and provide these services
directly to patients in the clinics or through a home- and community-based
services (HCBS) model. This is important for patients with disabilities
who may require long-term care services.
Indian Health Service
AI/AN people have a unique relationship with the Federal
Government. This relationship stems from Article I, Section 8 of
the U.S. Constitution and is affirmed through numerous treaties,
federal laws, Supreme Court decisions, and executive orders. A significant
component of this relationship is the Federal Government's responsibility
to provide health care services to Indian people.
The Federal Government carries out this responsibility
through IHS, an agency within the Department of Health and Human
Services (HHS). IHS is the primary health provider and health advocate
for AI/AN people, and its goal is to raise their health status to
the highest possible level. Unfortunately, IHS funding is never
adequate for the challenge, and services are often rationed at the
local level.
IHS is composed of 12 regional administrative offices
known as Area Offices. Within each of these Area Offices, locally
administered Service Units coordinate health services for tribal
beneficiaries. Across the United States there are over 151 individual
Service Units. Some Service Units are administered by the Federal
Government, and some have been contracted by tribes, under the Indian
Self-Determination Act (PL 83-638).
There are no "guaranteed benefits" for IHS patients.
Services vary from one IHS/tribal clinic, health station, or hospital
to the next. You must check with your local IHS or tribal health
program to know which services are available. Services could include
- Outpatient medical services
- Inpatient hospital or specialty services (direct
or referral)
- Dental services
- Mental health services
- Pharmacy and laboratory services
- Home nursing visits
- Community health representative visits
- Transportation
Eligibility for IHS Direct Services:
To be eligible for "direct services" provided by the IHS directly
or by a tribe, which administers services on behalf of the IHS,
a person must be a member or a descendant of a federally recognized
tribe. To be recognized as a descendant, an individual must show
that he/she
- Is regarded by the community in which he/she lives
as an Indian or Alaska Native;
- Is a member, enrolled or otherwise of an Indian
or Alaska Native tribe or group under federal supervision;
- Resides on tax-exempt land or owns restricted
property;
- Actively participates in tribal affairs; or
- Has any other reasonable factor indicative of
Indian descent. (IHS, 2002)
In addition, IHS allows Indians of Canadian or Mexican
origin who are recognized by any Indian tribe or group as a member
of an Indian community served by the Indian program to also be eligible
for IHS services. In certain cases, non-Indians can also be eligible
for IHS services: for instance, a non-Indian woman who is pregnant
with an eligible Indian's child or, in cases of public health hazard
or acute infectious diseases, a non-Indian member of an eligible
Indian's household.
Eligibility for IHS Contract Health
Services (CHS): In cases where IHS or a tribal facility cannot
provide within its own facility certain inpatient or specialty medical
services, IHS can refer a patient to an outside or private provider.
In these cases, the private provider or hospital will bill IHS for
services to the patient. Due to limited funding, eligibility requirements
for CHS are stricter than for services provided at an IHS or tribal
facility. IHS/CHS eligibility requires that the IHS eligible patient
also reside within a defined Service Delivery Area, which usually
includes the counties overlapping or bordering the tribal reservation.
It is important to note that prior approval from the IHS or tribal
clinic is required for each CHS eligible service visit. Close coordination
with the IHS or tribal clinic is required to effectively utilize
CHS services.
How do I enroll? Your first
visit should be with the IHS or tribal health clinic to register
as a patient. You might be asked to name your tribe of enrollment
or the tribe from which you descend on the registration form. In
some cases, you might be asked to show your tribal identification
card. For more information you can visit the IHS Web site at www.ihs.gov.
Medicaid
Medicaid is a federal program administered by the
states. It was enacted in 1965 to pay for medical care for certain
individuals with low income or lack of resources. For Indian and
Alaska Native communities, it can help fill the gap in providing
resources that might not be available through the IHS. It is also
important to know that the IHS or tribal health clinic can bill
Medicaid for services provided to Indian patients who are enrolled
in Medicaid. This helps your local Indian clinic expand services.
Am I eligible? States decide
who is covered, how providers get paid, and what services are covered
under Medicaid. Eligibility can vary from state to state. At a minimum,
the Federal Government requires states to cover
- Families with children who meet the Aid to Families
with Dependent Children (AFDC) requirements in place on July 16,
1996 (former AFCD program)
- Poverty-level pregnant women and children
- People with disabilities who are enrolled in SSI
If an Indian or Alaska Native is enrolled in Medicaid,
that program is required to pay for services before the IHS pays.
Courts have determined that IHS is the "payer of last resort." States
cannot restrict Medicaid eligibility based on medical condition,
type of services needed, or place of residence.
Financial eligibility for Medicaid will be determined
upon a review of income and resources. Most states use Supplemental
Security Income (SSI) as the basis for determining financial eligibility,
while some states develop their own formula to determine income
and resources (Dixon, 2002).
What services are covered under
Medicaid? Unlike IHS, Medicaid programs have a "defined benefits
package" that each enrollee is entitled to receive. You can get
these services at your local IHS clinic or at another clinic or
facility. These packages vary from state to state, and some states
might require a nominal co-payment by the patient for certain services.
Medicaid Mandated Services (states must cover):
- Inpatient hospital services
- Outpatient hospital services
- Physician services
- Nursing facility services for individuals age
21 and older
- Home health services for anyone entitled to nursing
facility care
- Early and periodic screening, diagnosis, and treatment
(for persons under age 21)
- Nurse-midwife services
- Family planning services
- Pediatric or family nurse practitioner services
- Other laboratory and X-ray services
- Dental services that would be covered if performed
by a physician
- Intermediate care facility for mentally retarded
- Doctor of osteopath services for children under
age 21 and pregnant women
Medicaid Optional Services (states can opt to cover):
- Nursing facility services for persons under age
21
- Home- and community-based services
- Hospice services
- Chiropractic services
- Private-duty nursing services
- Dental services
- Physical therapy
- Occupational therapy
- Services for people with speech, hearing, and
language disorders
- Prescription drugs
- Prosthetic devices
- Eyeglasses
- Diagnostic, screening, prevention, and rehabilitation
services
- Personal care services
- Pediatric immunizations
- Tuberculosis-related services
- Transportation
- Targeted case management services
- Institution for mental disease for individuals
age 65 and over
- Inpatient psychiatric services for individuals
under age 21
Making Medicaid Work for People
with Disabilities: It is important to check with your state
or local Medicaid Agency to see which services are covered. The
Federal Government requires that home health services be provided
if authorized by a physician. Services could include nursing, home
health aides, medical supplies, medical equipment, and appliances
suitable for use in the home (Dixon, 2002). Further, states can
opt to expand this list to include personal care services, physical
therapy, occupational therapy, speech pathology, audiology, rehabilitation,
private-duty nursing, and transportation.
How do I enroll? Many IHS
or tribal health clinics have business office staff or benefits
coordinators who will help you fill out the necessary forms to apply
for Medicaid enrollment. You can also go directly to your local,
county, or state Medicaid office to apply.
Medicaid Home- and Community-Based Services (HCBS)
We used to think of long-term care as nursing home
care. While nursing home care can be appropriate for some individuals,
it is no longer the only option. In 1981, federal law was amended
to allow state Medicaid programs to include HCBS waivers (Social
Security Act, Sect. 1915(c)). Today, all 50 states have implemented
some type of HCBS waiver as an alternative to institutionalizing
the elderly and people with disabilities.
The move to support de-institutionalizing people requiring
long-term care received an important boost from the U.S. Supreme
Court in 1999, when it ruled in Olmstead v L.C. (527 U.S. 581) that
Title II of ADA requires states to provide community-based treatment
for persons with mental disabilities when the providers determine
that institutional care is inappropriate. The practical effect has
been that states must now provide the "least restrictive care" for
people with disabilities.
What can tribes do? Tribal
health programs should review their state HCBS plans to see how
tribally administered home- and community-based services can be
paid through Medicaid reimbursement. In addition to the medical
services offered by state Medicaid programs, states can also opt,
by waiver, to provide case management, homemaker, home health aide,
personal care, adult day health services, habilitation, respite
care, and other related services. HCBS waiver programs may also
provide services designed to foster independence, train family caregivers,
and enable the individual to stay at home.
Who is most at risk for institutionalization?
Unfortunately, the misuse of nursing homes, unnecessary physical
restraints, and excessive referrals to large institutions has been
a problem in communities across the United States for our elderly
and people with severe disabilities (Shapiro, 1994). Those most
at risk include the elderly, technology-dependent children, persons
with traumatic brain injuries, persons with mental retardation or
developmental disabilities, Alzheimer's patients, and others with
severe disabilities (CMS, 2001).
Special Provisions for Children:
Medicaid's Early and Periodic Screening, Diagnosis, and Treatment
(EPSDT) program serves as Medicaid's well-child program, providing
regular screening, immunizations, and access to care. When a problem
is identified, EPSDT is used to confirm the diagnosis and cover
appropriate treatment. EPSDT pays for the services. A state's HCBS
waiver program can be used to provide Medicaid eligibility to children
whose parents' income and resources exceed the usual thresholds.
Such a waiver allows states to provide care at home or in their
communities to children who would otherwise be eligible for Medicaid
only if they were institutionalized. States try to coordinate their
HCBS and their EPSDT programs to look out for the best interests
of the child and to make sure their special needs are met (CMS,
2001).
Medicare
Medicare is a federal program administered by the
Federal Government though the Centers for Medicare and Medicaid
Services (CMS). Medicare provides federal "health insurance" for
hospital care (Part A) and medical care (Part B). In both programs,
there can be some level of deductibles and co-insurance that must
be paid by the patient. Medicare also provides preventive care benefits,
including flu shots, mammogram screening, women's health screening,
diabetes education, colorectal cancer screening, bone mass testing,
and prostate test screening.
Part A coverage includes
- Hospital care
- Skilled nursing facility care
- Home health care
- Hospice care
Part B coverage includes
- Physician services
- Durable medical equipment
- Kidney dialysis and kidney transplants
- Outpatient hospital services
- X-rays and laboratory tests
- Limited ambulance benefits
Medicare does not generally cover costs associated
with long-term care. The number of days of continuous care is limited
under Medicare. Long-term care is generally covered by Medicaid.
Am I eligible for Medicare?
Medicare provides coverage for certain types of health care services
for the following groups of people:
- People age 65 or older
- Some people with disabilities (if receiving Social
Security disability benefits for 24 months prior)
- People with end-stage renal disease (permanent
kidney failure requiring dialysis or transplant)
If you are a person with disabilities and are under
65, and you have been entitled to Social Security disability benefits
for at least two years, you will be automatically entitled to Medicare
Part A beginning the 25th month of disability benefit entitlement.
How do I enroll? The
Social Security Administration handles Medicare eligibility and
enrollment. You can contact the Social Security Administration at
1-800-772-1213 to enroll in Medicare or to ask questions about your
eligibility. You can visit their Web site at www.ssa.gov
or at www.medicare.gov.
State Children's Health Insurance Program (SCHIP)
SCHIP was established by the Federal Government and
is administered by the states, much like the Medicaid program. It
is intended to be more flexible than the Medicaid program, but this
varies from state to state. Some states will use their SCHIP dollars
simply to expand their Medicaid program. Other states have established
a stand-alone SCHIP program that targets children who might not
be eligible for Medicaid but who still lack health insurance because
of low income. You need to check with your local, county, or state
health offices and ask about SCHIP coverage to know what is available
in your state. Remember, federal law prohibits states from charging
co-payments for SCHIP coverage to Native American children enrolled
in the program. States are allowed to charge co-payments for SCHIP
coverage, but not to Indian children.
Am I eligible for SCHIP? Your
child or children might be eligible for SCHIP. Some states allow
the entire family to be covered; most states cover only the children
(www.cms.gov). The program is for
children who do not currently have health insurance (IHS is not
considered health insurance). Even if you are working, your child
might still be eligible. Most states insure children up to 18 years
old whose families earn up to $34,100 a year (for a family of four).
How do I enroll? You should
contact your local IHS or tribal clinic to see if they will help
you enroll your child or children in SCHIP. Remember, Indian children
have no co-payment requirements under this program. You can also
contact your local county or state health offices to enroll in SCHIP.
For more information, see the SCHIP Web site at www.cms.gov/schip/.
Sports and Recreation
Many options are available for people with disabilities
with regard to recreation and sports. Community trips to movies
and theater, spectator sports, sightseeing tours, museums, concerts,
shopping, restaurants, and clubs help individuals with disabilities
problem-solve, transfer therapy skills, and cope with real-life
situations, especially as part of a rehabilitation program. Camps
and camping are also important and popular forms of recreation for
people with disabilities, and many organizations have camps designed
for the special needs of people with disabilities. Sporting activities
and organizations for people with disabilities include the following:
- Aquatics
- Archery
- Aviation
- Badminton
- Baseball
- Basketball
- Billiards
- Boccia
- Bowhunting
- Bowling
- Cycling
- Dance sport
- Fencing
- Fishing
- Goalball
- Golf
- Gymnastics
- Handball
- Hockey (floor, ice, ice sledge, sledge, and sled)
- Horseback riding
- Hunting
- Lawn bowling
- Martial arts
- Orienteering
- Power
As for sports programs, national, community, high
school, and collegiate sports programs are primarily designed for
people without disabilities. However, people with disabilities are
frequently integrated into these "conventional" sports programs.
There are advantages to integration as these programs usually have
better coaching, better facilities, and more intensive training
for their participants. In fact, ADA requires that community programs
be accessible to people with disabilities, and IDEA requires that
public school intramural and interscholastic sports programs be
available to individuals with disabilities (Disability Sports, 2001b).
In 2001, HHS made increasing the number of physically
active individuals with disabilities a public health priority. Research
indicates that the benefits for anyone engaged in regular exercise
(3 or more days per week for 20 or more minutes) are as follows:
- Physiological and psychological benefit
- Increased health-related physical fitness such
as cardiovascular endurance, muscle strength, muscle endurance,
and flexibility
- Weight control and the prevention of obesity and
other health-related conditions
- Psychological benefits such as decreased anxiety
and depression with improvements in emotions, self-esteem, and
self-confidence (ILRU, 2001)
For people with disabilities, especially those with
spinal cord injuries, vigorous physical exercise and sports (e.g.,
wheelchair sports such as basketball, bowling, track and field,
swimming, archery, table tennis, softball, football, marathons,
and rugby) are highly beneficial for
- Stimulating circulation
- Helping to prevent skin breakdown
- Increasing fluid intake
- Promoting self-worth and mental health
- Improving the immune system and overall health
- Reconnecting with the past and supporting a patient's
construction of an identity following the injury
- Enhancing physical performance and inducing positive
physiological adaptations
- Increasing community integration (PoinTIS, 2002)
Unfortunately, people with disabilities wishing to
participate in sports are faced with numerous barriers:
- Sometimes people with disabilities find it difficult
to believe in their abilities and to view themselves as athletes.
- Acceptance by teammates, coaches, officials, and
sports administrators usually must be earned through performance,
sportsmanship, and work ethic. A positive example from a team
coach can help in this area.
- Access to quality coaching, programs, sports sciences
services, and accessibility can be difficult. Many coaches and
program directors still find difficulty in viewing athletes with
a disability as deserving of attention and expertise.
- Athletes with disabilities frequently experience
greater financial burdens associated with sports participation
than nondisabled athletes because of increased costs associated
with specialized equipment, personal assistance, insurance, and
travel. (Disability Sports, 2002)
For tribal members with disabilities living on reservations,
these barriers can seem insurmountable. However, organizations and
resources are available to tribal members with disabilities who
wish to participate in sports and recreational activities. In addition,
tribal members with disabilities can also contact the nearest independent
living center (ILC) for sports and recreation opportunities.
References
Center for Medicare and Medicaid Services (CMS). (2001).
Fact Sheet: Home and Community Based Services. Washington, DC: CMS.
Disability Sports. (2002). Barriers to participation.
Retrieved October 21, 2002, from
http://ed-Web3.educ.msu.edu/kin866/issbarrier.htm.
Disability Sports. (2001b). Inclusion in "regular"
sports programs. Retrieved October 21, 2002, from
http://ed-Web3.educ.msu.edu/kin866/orgregular.htm.
Dixon, Mim. (2002). Opportunities for Medicaid financing
of long term care in American Indian and Alaska Native communities.
American Indian and Alaska Native Roundtable on Long Term Care:
Final Report. Indian Health Service, 26.
Independent Living Research Utilization (ILRU) at
TIRR. (2002). Definitions of health & wellness. Retrieved October
18, 2002, from www.ilru.org/healthwellness/healthinfo/wellness-definition.html.
Independent Living Research Utilization (ILRU) at
TIRR. (2001). Physical activity, motivation and people with disabilities.
Retrieved October 18, 2002, from
www.ilru.org/online/handouts/2001/Kosma/motivating.html.
Indian Health Service (IHS). (2002) Eligibility requirements
for health services from the Indian Health Service. Retrieved November
4, 2002, from
www.ihs.gov/GeneralWeb/HelpCenter/CustomerServices/elig.asp.
PoinTIS Spinal Cord Injury Recreational Therapy. (2002).
Recreational activities: Community trips, sports, independent living.
Retrieved October 18, 2002, from
http://calder.med.miami.edu/providers/RECREATIONAL/rec2.html.
Shapiro, Joseph P. (1994). No Pity. New York: Times
Books.
Education Background
"There are approximately 500,000 American Indian and
Alaska Native (AI/AN) students attending K-12 schools in the United
States. Of the 500,000 AI/AN students, the majority (approximately
90 percent) attend public schools. The remaining 10 percent attend
schools operated or funded by the Bureau of Indian Affairs (BIA)
and Tribes" (Faircloth and Tippeconnic, 2000, p. 1). The Twenty-second
Annual Report to Congress on the Implementation of the Individuals
with Disabilities Education Act (U.S. ED, 2000) reports that "American
Indian students represent 1.0 percent of the general population
and 1.3 percent of special education students. American Indian students
slightly exceeded the national average in nine disability categories,
reaching the largest percentages in the categories of deaf-blindness
(1.8 percent) and traumatic brain injury (TBI) (1.6 percent)." These
statistics suggest that AI/AN students are slightly over-represented
in the special education population (Faircloth and Tippeconic, 2000).
For centuries now, educating Indian children has been
a primary focus of government agencies and tribes. Boarding schools
and other public education institutions have significantly affected
the Indian community and how we look at education. The education
of AI/AN children has reached crisis proportions as reflected in
national and state data trends. So what happens to children with
disabilities living in Indian country? What resources are available
to children and parents?
The following section is designed to assist you by
outlining federal education laws, by providing practical tips for
parents, and by providing resources for technical assistance and
protection.
Federal Special Education Law
On January 8, 2002, the federal law No Child Left
Behind was signed by the President of the United States. This law
holds educators, elected officials, policymakers, and parents accountable
in an attempt to close the academic achievement gap between high-
and low-performing students. The No Child Left Behind law allows
parents to become involved in the development of district policies
and plans for their child's education. Parents and community leaders
can participate in school improvement efforts. This new law affects
every school district in the country (Public Education Network,
2003). This law is especially important for rural, isolated schools
such as those serving AI/AN children living on or near Indian country.
Too many children are being left behind, and AI/AN children have
historically fallen way below the national average in academic achievement
compared with non-Indian children.
No Child Left Behind, in concert with IDEA, the federal
special education law, can provide parents with new tools to ensure
that their child's special education needs are being met. The Office
of Special Education Programs (OSEP) administers IDEA, which guides
the entire special education process. Special education programs
follow rules and regulations set by federal and state governments.
IDEA is implemented locally in all parts of the United States. As
part of this law, OSEP of the U.S. Department of Education is responsible
for meeting with each state and U.S. entity, including BIA, the
Office of Indian Education Programs, and the Branch of Exceptional
Education to ensure that the requirements of the law are being adequately
met. Special education services in your area must meet these federal
as well as local and state IDEA regulations (FAPE, 2002). The Act
is authorized through 2002; the reauthorization process will be
taken up in early 2003.
Individualized Education Programs
IDEA requires public school systems and BIA-funded
schools to develop appropriate Individualized Education Programs
(IEPs) for each child. The specific special education and related
services outlined in each IEP reflect the individualized needs of
each student. IDEA also mandates that particular procedures be followed
in the development of the IEP. Each student's IEP must be developed
by a team of knowledgeable persons and must be at least reviewed
annually. The team includes the child's teacher; the parents (subject
to certain limited exceptions); the child (if determined appropriate);
an agency representative who is qualified to provide or supervise
the provision of special education; and other individuals at the
parents' or agency's discretion (DOJ, 2001).
Tips for Parents at IEP Meetings
The Arizona Center for Disability Law's Client Assistance
Program (2002) offers both the tips and checklist that follow for
parents who are working with their child's school to create an IEP
that meets the unique needs of their child.
In arranging IEP meetings, you should remember the
following:
- You or the school can ask that an IEP meeting
be scheduled.
- Meetings to plan or review your child's IEP should
be held when you can attend.
- If you cannot attend a meeting that has been scheduled,
call the school immediately and ask that the meeting be rescheduled.
- The notice of the meeting should state the purpose,
date/time, location, and participants of the meeting.
- Ask for an interpreter, if needed.
Prior to the IEP meeting you may prepare by doing
the following:
- Set up an appointment to go to the school to review
your child's school records.
- Ask for a copy of a blank IEP form so that you
know what will be discussed.
- Get a copy of the school's proposed IEP, if one
has been prepared.
- Get information and help from other parents or
advocacy groups.
- Make a list of questions and comments to take
to the meeting.
At the meeting you can be an effective team member
in the following ways:
- By participating by a telephone call or a letter,
if you cannot attend the meeting.
- By reminding the school, if necessary, that you
will not sign a prepared IEP but wish to be involved in writing
the IEP.
- By asking questions and sharing knowledge about
your child with the team.
- By remembering that you may tape-record the meeting.
- By remembering that you may bring another parent,
interested professional, or trained advocate with you.
- By knowing your child's rights and discussing
these rights with the team.
At the close of the meeting
- Be certain that you understand your child's IEP.
If you don't understand the IEP, ask the school to explain the
services.
- Obtain a copy of the IEP.
- Though you should try to cooperate with the school,
do not sign the IEP if it does not meet your child's needs.
- Request a due process hearing if you do not agree
with the plan offered by the school (contact an advocate before
requesting the hearing).
- Remember that the IEPs should be reviewed at least
once per year.
IEP Checklist
Your child's IEP should contain all of the following:
- Information about the child's strengths and needs
- Measurable annual goals
- Short-term instructional objectives (short teaching
steps that the team develops to allow each student to reach his/her
annual goals)
- Services to be provided (including any related
services needed to benefit from the school program such as transportation,
physical therapy, occupational therapy, speech therapy, counseling,
psychological services, or interpreter)
- Date each service will begin and end
- How progress will be measured
- Progress reports as often as children without
disabilities receive them
- An explanation of the extent, if any, to which
the child will not participate with nondisabled children in the
regular classroom
- Transition services planning (beginning no later
than age 14)
- Transition services programming (beginning no
later than age 16) (Arizona Center for Disability Law, 2001)
Problem Solving
IDEA has procedures in place to allow any member of
the child's IEP team to bring a problem to the attention of team
members. The student's parents are given rights and protections
called procedural safeguards. These rights allow parents to question
decisions made by the school regarding their children's education
(DOJ, 2001).
When disputes arise, IDEA favors solving the problem
by both parties through a process called mediation (FAPE, 2002).
The Consortium for Appropriate Dispute Resolution in Special Education
(CADRE) is such an alternative that is funded by the U.S. Department
of Education. CADRE encourages the use of mediation and other collaborative
strategies to resolve disagreements about special education and
early intervention programs. CADRE uses advanced technology as well
as traditional means to provide technical assistance to state departments
of education on implementation of the mediation requirements under
IDEA '97. CADRE also helps parents, educators, and administrators
benefit from the full continuum of dispute resolution options that
can prevent and resolve conflict and ultimately lead to informed
partnerships that focus on results for children and youth (CADRE,
2002).
For a more detailed description of due process and
complaint process guarantees provided for AI/AN children and families
under IDEA, please refer to the Federal Disability Law and Tribes
section of the Toolkit.
Office of Special Education Programs
OSEP has developed five strategic directions designed
to improve education results for students with disabilities (OSEP,
2002). These directions are based on research and outreach that
focused on what is currently working for students, parents, teachers,
and schools. These directions are also closely tied to the IDEA
legislation. OSEP was in fact the sponsor of the research that preceded
the legislation. The following descriptions of the strategic directions
and the brief information about the projects, publications, technical
assistance centers, and clearinghouses are quoted directly from
the U.S. Department of Education's Web site in order to provide
you with the most complete information possible. More detailed information
can also be obtained by contacting OSEP directly:
Strategic Direction 1: Infants, Toddlers, and Their
Families Receive the Supports They Need
The first weeks and months of an infant's life can
significantly affect all aspects of his/her entire life, including
success in school. Data and anecdotal information indicate that
families all across the country often are not informed early enough
about the importance of early intervention. Too often children with
significant disabilities may be 2 or 3 years old before they are
referred for assessment and early intervention. Schools have a great
stake in early identification and service provision for all eligible
infants and toddlers and their families. Relevant state agencies
must develop strong interagency partnerships to ensure a continuous,
effective campaign to identify children in need of early intervention.
It is also equally important that our youngest children
and their families receive services and supports in natural environments.
Services provided in the home, childcare, or other community-based
settings are reporting positive responses from families and the
early childhood community. Moreover, children who start off in settings
with their peers who don't have disabilities are more likely to
be included throughout their school years.
IDEAs That Work for Infants and Toddlers
Project: "Supporting Neurobehavioral Organizational
Development in Infants With Disabilities: The Neurobehavioral Curriculum
for Early Intervention"
Phone: (206) 285-9317
E-mail: mgallien@halcyon.com; anotari@wri-edu.org
The goal of this project is to provide curriculum for parents and
professionals so that they can support the neurobehavioral organization
of infants born with very low birth weight or with severe disabilities.
Project: Circle of Inclusion Web Site
Web site: www.circleofinclusion.org/
This Web site offers demonstrations and information about the effective
practices of inclusive educational programs for children with disabilities
(birth through age eight).
Technical Assistance Center: National Early Childhood
Technical Assistance System (NECTAS)
Phone: (919) 962-2001
TTY/TDD: (919) 962-8300
Web site: www.nectas.unc.edu
Technical Assistance Center: Technical Assistance
Alliance for Parent Centers - The Alliance.
Phone: (888) 248-0822
TTY/TDD: (612) 827-7770.
Web site: www.taalliance.org
Strategic Direction 2: Preschool Programs That Prepare
Children with Disabilities for Elementary School Success
In 1986, half as many children attended preschool
programs as today and only 24 states participated in the preschool
program. Today all states have a preschool program for children
with disabilities. It is not good enough just to offer the child
a program. The program must be rigorous and prepare children for
success in school. OSEP supported a study with the National Academy
of Sciences on preventing reading failure in young children. This
study showed that a rich preschool program can make a difference.
It is also important that in those programs children have opportunities
to have an integrated experience with their nondisabled peers. We
must make sure that our preschool programs are preparing children
to be successful in the primary grades.
IDEAs That Work for Preschool Children
Project: Reaching Individuals with Disabilities Early
(RIDE Project)
Web site: www.ovec.org/ride/Home/index.htm
RIDE is a model demonstration project with the goals of
1. Enhancing child-find efforts in targeted school
districts by distributing multifaceted awareness packages and
2. Helping school districts to develop local capacity
in the delivery of assistive technology services, by providing
an intensive training program.
Project: Language Is the Key
Web site: www.wri-edu.org/bookplay
A video-training program designed to address the needs of professionals
and paraprofessionals who work with young children with language
disorders.
Publication: Preventing Reading Difficulties in Young
Children
Web site: www.nap.edu
Technical Assistance Center: National Early Childhood
Technical Assistance System (NECTAS)
Phone: (919) 962-2001
TTY: (919) 962-8300
Web site: www.nectas.unc.edu
Strategic Direction 3: Effective Intervention for
Young Students with Reading or Behavior Difficulties
The importance and effectiveness of strategies that
intervene early in a child's development are well recognized in
improving results for children with disabilities. Unfortunately,
approximately 60 percent of the children currently being served
under IDEA are typically identified too late to receive full benefit
from such interventions. This problem is most prominent with two
specific populations of children: those identified for special education
and related services under the categories "specific learning disabilities"
and "emotional disturbance." These children are often not identified
as being eligible for special education and related services until
after their disabilities have reached significant proportions. These
are children who very early in their education experience marked
difficulties learning to read or exhibit behaviors that lead to
discipline problems as they get older.
A body of research on the topic tells us how to assess,
identify, and help these children. For instance, research indicates
that
- Both populations of children can be assessed and
identified early and with relative ease and accuracy;
- Both populations of children, based on the nature
of their disabilities, are at high risk for dropping out of school,
becoming discipline problems, and for failing in school;
- Both populations of children need valuable time
that is essential to learning, time often lost because these children
do not receive appropriate services earlier; and
- Both populations can make tremendous gains when
provided with effective services during early childhood.
In practice, however, schools and teachers simply
are not prepared to implement effective research-based practices
to meet the needs of these children. We must join with our general
education partners to ensure that all children experiencing early
reading or behavior difficulties receive the services they need.
IDEAs That Work for Children with Reading or Behavioral
Difficulties
Budget Request: The President has proposed, for the
fiscal year 2000 budget, a $50 million dollar initiative called
PRIME TIME: Reading and Behavior Initiative that will support demonstrations
of school-based models of effective programs and practices to serve
children who have marked difficulty learning to read and/or who
exhibit behaviors that lead to discipline problems as they get older.
Project: National Center on Accelerating Student Learning
(CASL)
Phone: (615) 343-4782
E-mail: lynn.fuchs@vanderbilt.edu; doug.fuchs@vanderbilt.edu
Promoting success in reading, writing, and math in grades K-3. CASL
is a five-year research effort designed to accelerate learning for
students with disabilities.
Publication: "Early Warning, Timely Response; A Guide
to Safe Schools"
Phone: (877) 4ED-PUBS
Web site: www.ed.gov/offices/OSERS/OSEP/earlywrn.html
Technical Assistance Center: Center for Effective
Collaboration and Practice (CECP)
Phone: (202) 944-5454
Web site: www.air-dc.org/cecp/default.htm
Technical Assistance Center: Center on Positive Behavioral
Interventions and Support
Phone: (541) 346-3560
E-mail: PBIS@oregon.uoregon.edu.
Strategic Direction 4: Appropriate Access to the
General Education Curriculum
It is critically important that children with disabilities
have access to the same curriculum that other children have if they
are going to become successful adults. Simply put, children with
disabilities should be learning what other children are learning
in school and schools should be held accountable for results. Current
research indicates that a large number of children with disabilities
are not learning the same things in school as other children and
therefore are not going to be in a position to graduate from high
school or to be successful in life. The IDEA '97 amendments provide
access to the general curriculum by requiring that states include
students with disabilities in nationwide assessments. It is important
that we manage our programs based on the results of these assessments.
IDEAs That Work to Ensure Access to the General Education
Curriculum
Project: Performance Assessment and Standardized Testing
for Students with Disabilities: Psychometric Issues, Accommodation
Procedures, and Outcome Analysis
Web site: www.wcer.wisc.edu/
This project focuses on how fourth- and eighth-grade
students with and without disabilities function on math and science
assessments.
Publication: "A Curriculum Every Student Can Use:
Design Principles for Student Access"
Web site: http://ericec.org/osep-sp.html
Published by the OSEP-sponsored ERIC/OSEP Special Project; ERIC
Clearinghouse on Disabilities and Gifted Education
Technical Assistance Center: National Center on Educational
Outcomes (NCEO)
Phone: (612) 626-1530
Web site: www.coled.umn.edu/nceo/
Technical Assistance Center: The National Center to
Improve the Tools of Educators (NCITE)
Phone: (541) 686-5060
Web site: http://darkwing.uoregon.edu/~ncite/index.html
Technical Assistance Center: The Parents Engaged in
Educational Reform Project (PEER)
Phone: (617) 482-2915
Web site: www.fcsn.org/peer/
Technical Assistance Center: Consortium on Inclusive
Schooling Practices (CISP)
Phone: (412) 359-1600
Web site: www.pgh.auhs.edu/CISP/
Technical Assistance Center: National Institute for
Urban School Improvement
Phone: (303) 620-4074
TTY/TDD: (703) 519-7008
E-mail: Elizabeth_Kozleski@ceo.cudenver.edu
Strategic Direction 5: All Students with Disabilities
Complete High School
Despite recent U.S. Department of Education reports
of improvement data, for a number of years, national statistics
have indicated that students with disabilities drop out of school
at a higher rate than nondisabled students do, and if they stay
in school, often complete their program without a standard diploma.
This is still the case in Indian country. We need to be committed
to graduating special education students with diplomas that represent
the attainment of skills and knowledge necessary to succeed in adult
life. We need to remember that higher education and lifelong learning
are stepping stones for everyone. We also have to recognize that
education and employment go hand in hand. We need to prepare our
students to earn their way to success. OSEP-sponsored research has
shown that monitoring students, building adult-student relationships,
increasing the student's connection to school, and improving student
problem-solving skills, along with ensuring access to general and
vocational curricula, all play a part in increasing a student's
chances of successful high school completion.
IDEAs That Work to Help Students with Disabilities
Complete High School
Project: The National Transition Alliance (NTA)
Web site: www.dssc.org/nta/
NTA has identified over 25 promising programs from across the country
addressing dropout prevention. A database of these programs is at
the Web site above. Use the search term "dropout." The NTA's purpose
is to promote the transition of youth with disabilities toward desired
post-school experiences.
Project: "Building Responsive High School Special
Education Programs"
Web site: www.ced.appstate.edu/projects/special_ed
This project is working in two high schools to improve the outcomes
for students with disabilities who are at risk of dropping out.
Publication: "The ABC Dropout Prevention and Intervention
Series"
Institute on Community Integration
Publications Office, University of Minnesota
150 Pillsbury Drive SE
Minneapolis, MN 55455
Phone: (612) 624-4512
A series of four booklets outlining effective dropout prevention
and intervention strategies for middle school and beyond.
Technical Assistance Center: The National Transition
Alliance for Youth with Disabilities (NTA)
Web site: www.dssc.org/nta/
Clearinghouse: The National Information Center for Children and
Youth with Disabilities
Web site: www.nichcy.org
Clearinghouse: HEATH Resource Center
Phone: (800) 544-3284 (voice, TTY)
Web site: www.acenet.edu/Programs/HEATH/home.html
OSEP-Sponsored Resources
IDEA authorizes formula grants to states and discretionary
grants to institutions of higher education and other nonprofit organizations
to support research, demonstrations, technical assistance and dissemination,
technology and personnel development, and parent-training and information
centers. These programs are intended to ensure that the rights of
infants, toddlers, children, and youth with disabilities and their
parents are protected.
Office of Special Education and Rehabilitative Services
U.S. Department of Education
400 Maryland Avenue SW
Washington, DC 20202
Phone: (202) 205-5507
TTY/TDD: (202) 205-5637
Web site: www.ed.gov/offices/OSERS/OSEP/index.html
IDEA Partnerships
OSEP funds four national projects, called IDEA Partnerships,
to deliver a common message about the landmark 1997 reauthorization
of IDEA. The IDEA Partnerships, working together for five years,
inform professionals, families, and the public about IDEA '97 and
strategies to improve educational results for children and youth
with disabilities (IDEA Practices, 2002). The IDEA Partnerships
include the following:
The Council for Exceptional Children
The Associations of Service Providers Implementing IDEA Reforms
in Education (ASPIIRE)
1110 North Glebe Road, Suite 300
Arlington, VA 22201-5704
Phone: (877) CEC-IDEA
TTY/TDD: (866) 915-5000
Fax: (703) 264-1637
Web site: www.ideapractices.org
The ASPIIRE IDEA Partnership builds upon the strengths
of 19 associations to assist practitioners in providing positive
outcomes for students with disabilities. ASPIIRE utilizes collaboration
to observe and learn from service providers in educational settings
and translate needs into guidance, accurate resources, and training
opportunities. Utilizing rapid-response systems with a vast information
dissemination network, the ASPIIRE IDEA Partnership acts as a pivot
point for distilling complex regulations into effective, research-based
practices. The Partnership continually taps the strengths and expertise
of its members.
The Families and Advocates Partnership for Education
(FAPE)
Partnership at the PACER Center
816 Normandale Boulevard
Minneapolis, MN 55437-1044
Phone: (888) 248-0822
TTY/TDD: (952) 838-9000
Fax: (952) 838-0199
Web site: www.fape.org
The FAPE Partnership at PACER Center aims to inform
and educate families and advocates about IDEA '97 and promising
practices. The FAPE Partnership links families, advocates, and self-advocates
to communication of the new focus of IDEA '97. The FAPE Partnership
has developed family-friendly curricula and materials addressing
the requirements of IDEA '97, positive behavioral supports, new
research, and other issues of concern to families. These resources
are also available in multiple languages through the FAPE Web site.
The Council for Exceptional Children
ILIAD IDEA Partnership
1110 North Glebe Road, Suite 300
Arlington, VA 22201-5704
Phone: (877) CEC-IDEA
TTY/TDD: (866) 915-5000
Fax: (703) 264-1637
Web site: ww.ideapractices.org
The ILIAD IDEA Partnership delivers support to the
ongoing efforts of local education administrators and leaders. As
the country continues to implement IDEA, the ILIAD Partnership brings
together the preeminent educational leadership associations and
builds upon their strengths and expertise. Together these groups
interact to determine multiple vehicles for providing information,
proven strategies, and technical assistance to school districts
in urban, suburban, and rural areas.
The Policymaker Partnership (PMP) at the National
Association of State Directors of Special Education
1800 Diagonal Road
Suite 320
Alexandria, VA 22314
Phone: (877) IDEA-INFO
Fax: (703) 519-3808
Web site: www.ideapolicy.org
PMP operates to increase the capacity of policymakers
to act as informed change agents who are focused on improving educational
outcomes for students with disabilities. The organizations that
partner with PMP have profound influence in promoting excellence
and equity for students with disabilities in the public education
agenda.
Technical Assistance Alliance for Parent Centers
Parent Training Centers, funded by the U.S. Department
of Education, are located all across the country. One example of
these programs is the AI/AN Families Together Parent Training and
Information Center, in Moscow, Idaho, which recruits and trains
community members to provide support and assistance to families
of AI/AN children with disabilities (NCD, 2002). Parent centers
in each state provide training and information to parents of infants,
toddlers, school-aged children, and young adults with disabilities
and the professionals who work with their families. This assistance
helps parents participate more effectively with professionals in
meeting the educational needs of children and youth with disabilities.
To reach the parent center in your state, you can contact the Technical
Assistance Alliance for Parent Centers (the Alliance), which coordinates
the delivery of technical assistance to the Parent Training Centers
and the Community Parent Resource Centers through four regional
centers located in California, New Hampshire, Texas, and Ohio.
Technical Assistance and Dissemination Network-Minorities
The Alliance Project for Tribal Colleges and Universities
PO Box 340
Wilmot, SD 57279
Phone: (800) 984-9406
Fax: (605) 938-4786
E-mail: jim@dailypost.com
Web site: www.alliance2k.org/introduction
The Alliance Project is funded by OSEP. The Project
seeks to address the increasing demand for qualified personnel from
historically under-represented groups in special education and related
services. A major emphasis of the Alliance Project is to increase
the success rate of special education and related services departments
in acquiring grants from the OSEP Division of Personnel Preparation
(DPP). The purpose of these grants is to prepare personnel in special
education and related services to meet the demand for qualified
professionals and to build institutional capacity.
Alliance engages in technical assistance and information
services for the preparation of DPP grant proposals and for institutional
development. Activities include grant writing workshops, mentoring,
and best practice seminars. The Project works with faculty members
in departments of general and special education, allied health and
health sciences, school psychology, and counseling at historically
Black colleges and universities, tribal colleges, and other institutions
of higher education whose enrollment includes at least 25 percent
of students from historically under-represented groups who are citizens
of the United States. These groups include Hispanics, African Americans,
Native Americans, and people with Asian ancestry.
AI/AN teachers and paraeducators are needed in K-12
special education settings. The Alliance Project for Tribal Colleges
works to help meet this need. During the initial Alliance 2000 Project,
14 tribal colleges and universities (48 percent) submitted DPP grant
proposals with Alliance assistance. Seventy-one percent of these
proposals were successfully funded.
Linking Academic Scholars to Educational Resources
(LASER)
Department of Special Education
University of South Florida
4202 East Fowler Avenue, EDU 162
Tampa, FL 33620
Phone: (813) 974-1385
Fax: (813) 974-5542
E-mail: btownsen@tempest.coedu.usf.edu
Web site: www.coedu.usf.edu/LASER
LASER's mission is to enhance the capacity of faculty
and graduate students in minority institutions to engage in research
that affects children from minority and/or low-income backgrounds.
Access the latest research, resources, news, and events in the field
of special education. Learn about new research programs designed
for scholars who are committed to the plight of impoverished youth.
Provocative online discussions focus on urgent topics facing our
nation's most challenged schools. Join the effort to narrow the
gap between special education research and practice.
National Information Center for Children and Youth
with Disabilities (NICHCY)
PO Box 1492
Washington, DC 20013
Phone: (800) 695-0285
Fax: (202) 884-8441
E-mail: nichcy@aed.org
Web site: www.nichcy.org
NICHCY's services are made possible through funding
from OSEP and operated by the Academy for Educational Development.
NICHCY shares information about disabilities and disability-related
issues regarding children and youth via their Web site and publications.
It will connect you with state and national resources, free of charge,
in English or Spanish. Anyone can use its services-families, educators,
administrators, journalists, students. Its special focus is on children
and youth (birth to age 22). NICHCY compiles disability-related
resources in each state and creates State Resource Sheets. These
handy resource sheets will help you locate the following people,
organizations, and agencies within your state that address disability-related
issues:
- Governors and U.S. Senators
- State agencies serving children and youth with
disabilities
- State chapters of disability organizations and
parent groups
- Parent training and information projects
References
Arizona Center for Disability Law, Client Assistance
Program (CAP). (2001). Educational rights of students with disabilities:
A self-advocacy guide. Retrieved September 27, 2002, from www.acdl.com/pdfs/SE1.pdf.
CADRE, The National Center on Dispute Resolution.
(2002). Retrieved September 27, 2002, from
www.directionservice.org/cadre/about.cfm.
Faircloth, Susan, and John W. Tippeconnic III. (2000).
Issues in the education of American Indian and Alaska Native students
with disabilities. Retrieved September 27, 2002, from
www.ael.org/eric/digests/ecord003.htm.
Families and Advocates Partnerships for Education
(FAPE). (2002). The Individuals with Disabilities Education Act
(IDEA). Retrieved September 30, 2002, from www.fape.org/idea/index.htm.
IDEA Practices On-line. (2002). Retrieved September
27, 2002, from
www.ideapractices.org/about/aspiire.php.
Langwell, Kathy, and Janet Sutton. (2002). People
with disabilities on tribal lands: Education, health, rehabilitation,
and independent living literature review. Washington, DC: National
Council on Disability.
National Association of State Directors of Special
Education On-line. (2002). Implementing the No Child Left Behind
Act: What it means for IDEA. Retrieved September 27, 2002, from
www.nasdse.org.
National Information Center for Children and Youth
with Disabilities. (2002). Retrieved September 30, 2002, from www.nichcy.org.
Office of Special Education Programs (OSEP), U.S.
Department of Education. (1999). Executive summary: Report of Bureau
of Indian Affairs special education program evaluation. Retrieved
December 17, 2002, from www.dssc.org/frc/nmpp/MonitoringReports/BIASelf-Assessment.pdf.
Office of Special Education Programs (OSEP). (2002).
IDEAs that work: OSEP's five strategic directions. Retrieved September
27, 2002, from www.ed.gov/offices/OSERS/OSEP.
Public Education Network. (2003). An action guide
for community and parent leaders. Retrieved January 6, 2003, from
www.publiceducation.org/pubs/pubpreorder/orderform.asp.
Technical Assistance Alliance for Parent Centers.
(2002). Parent training and information centers and community parent
resource centers. Retrieved September 27, 2002, from www.taalliance.org/PTIs.htm.
U.S. Department of Education (U.S. ED). (2000). Twenty-second
annual report to Congress on the implementation of the Individuals
with Disabilities Education Act (IDEA). Washington, DC: U.S. Government
Printing Office. Retrieved December 30, 2002, from
www.ed.gov/offices/OSERS/OSEP/Products/OSEP2000AnlRpt/PDF/Chapter-2.pdf.
U.S. Department of Justice (DOJ), Civil Rights Division,
Disability Rights Section. (2001). A guide to disability rights
laws. Retrieved September 27, 2002, from www.usdoj.gov/crt/ada/cguide.htm.
Independent Living Background
In essence, independent living is a philosophy that
people with disabilities have the same rights, choices, and options
as anyone else. It is the belief that one should have opportunities
to make decisions affecting one's own life and pursue activities
of one's own choosing. This philosophy emphasizes self-determination
with an individual having the freedom to learn from one's own experiences
(ILRU, 2002).
Such a philosophy marks a radical departure from the
traditional rehabilitation perspective in which a disability is
seen as a deficit and as a limitation. The independent living philosophy
offers individuals the opportunity to choose a role other than victim,
patient, or sufferer. In the independent living perspective, an
individual's disability is not the emphasis. Rather, the independent
living perspective emphasizes the individual's right to the types
of help and assistance that the individual chooses. Although living
on one's own and having a job suited to one's capabilities, for
example, are critical aspects of independent living for many people,
more important is the individual's decision to live or work according
to his/her own desire that more accurately defines independent living
(ILRU, 2002).
A comparison of traditional rehabilitation and independent
living service models in five categories (Limitations, Label/Role,
Objectives, Organizational Structure and Response, Community and
Self-Perceptions of Person with a Disability) shows this difference
in philosophy. The rehabilitation model views limitations as physical
impairments resulting in functional limitations related to walking,
seeing, hearing, learning, etc. The independent living service model,
on the other hand, views limitations as the community barriers,
including stereotypes, stigma, prejudice, discrimination, low expectations,
and structural barriers, that people with disabilities must navigate
in order to have an active life of their choosing. In the area of
labels and roles, it is not uncommon for the rehabilitation model
to consider an individual with disabilities as a patient, victim,
or sufferer. The independent living philosophy would describe the
same individual as a "person with a disability," an "advocate,"
or a "consumer." The objective of the rehabilitation philosophy
is to fix deficits and to overcome limitations. Independent living
service models seek systems change to reduce structured inequality
and disability awareness to minimize restrictive perceptions. In
the area of organizational structure and response, the rehabilitation
model vests control in professionals. The knowledge base is advanced
degrees, professional counseling, or professional therapy. The independent
living service model seeks to vest control in the person(s) with
disabilities. The knowledge base is experiential, focusing on achieving
independence. Peer support and counseling are recommended. Independent
living skills training is provided. Finally, there are differences
in the community and self-perceptions of a person with a disability.
The rehabilitation model would identify a person who, as a result
of a disability, is unable to participate in a variety of roles
due to lack of function. The independent living model would see
a person identified as having a disability as someone who, as a
result of community perceptions and structural barriers, is restricted
from participating in a variety of social roles, including roles
that relate to education, employment, recreation, social, worship,
and civic activities.
By valuing diverse perspectives and approaches to
living in and contributing to one's community, the independent living
concept offers tribes the opportunity to develop services and programs
for tribal members with disabilities that are tailored to their
own unique cultures. This philosophy invites tribal members and
communities to tap into and express their deeply held values and
beliefs. For some this may mean taking a wellness approach; for
others, seeking balance; for still others, deepening their understanding
of traditional healing or of their own tribe's teachings. For tribes,
designing a program to assist tribal members with disabilities can
be part of a larger healing journey.
Model Approaches
In the United States, independent living organizations
with an emphasis on Native Americans are a relatively new concept.
However, three organizations have pioneered in this area, providing
independent living services specifically to Native Americans. Each
of the three programs that follow exemplifies unique approaches
to providing independent living programs and services to Native
Americans, as well as additional services designed to meet the needs
of the Indian communities they serve:
ASSIST! to Independence
PO Box 4133
Tuba City, AZ 86045
Phone: (928) 283-6261; (888) 848-1449
Voice/TTY: (928) 283-6672
Fax: (928) 283-6284
E-mail: assist@cybertrails.com
Web site: www.assisttoindependence.org
The mission of ASSIST! to Independence is to provide
culturally relevant services to a cross-disability American Indian
consumer population. Each of its programs emphasizes a common goal
of enhancing quality of life and community life through maximizing
independence and improving functional skills. These services are
provided in an environment that promotes active consumer and family
participation in self-determination and equal opportunities. ASSIST!
to Independence is a community-based, American Indian-owned and
-operated nonprofit agency that was established by and for people
with disabilities and chronic health conditions to help fill some
of the gaps in service delivery (ASSIST!, 2002a).
ASSIST! provides services primarily to the Navajo,
Hopi, and Southern Paiute Reservations; however, anyone needing
information or assistance in the northern part of the state is welcome
to request services. The agency serves as a consumer-driven community
action program to facilitate general awareness of disability-related
issues, community access, education, information sharing, assistive
technology access, advocacy, and independent living that is culturally
appropriate for American Indians. This is done through a comprehensive
collaborative network, which provides support and resources that
promote the active participation of each individual in his/her self-care
management. Program staff provide the tools necessary for individuals
to make informed choices and decisions; to maintain a maximum level
of independent living; to achieve equality of opportunity, inclusion,
and integration in the community and society; and to attain economic
and social self-sufficiency (ASSIST!, 2002a).
ASSIST! serves as the umbrella organization for five
major programs: (1) The Regional Resource Center for Assistive Technology;
(2) The Center for Independent Living; (3) The Special Needs Toy
Lending Library; (4) The Functional Assessment Clinic; and (5) The
Sensory Integration Program. ASSIST! provides the four core independent
living services of (1) information and referral; (2) independent
living skills training; (3) individual and systems advocacy; and
(4) peer mentoring. In addition to these four core services, ASSIST!
also provides traditional healing, home modifications and environmental
interventions, durable medical equipment, and nonemergency transportation
to medical appointments for individuals who qualify (ASSIST!, 2002a).
ASSIST! attributes its success to the following:
- ASSIST! services are dynamic and fluid in nature,
so they are able to respond fairly quickly to current needs within
the community.
- ASSIST! believes in understanding and immersion
in the culture they are serving, and respecting differing cultural
needs.
- ASSIST! uses aggressive outreach promoting "wellness"
services, as opposed to services targeted primarily for people
with disabilities.
- ASSIST! uses extensive and comprehensive collaborations
and networking within the community.
- ASSIST! develops close working relationships with
"nontraditional disability specialists," such as community health
representatives, senior centers, and public health nurses.
- ASSIST! has a visible presence within the community.
They attend many senior functions and all health fairs promoted
by Chapter Houses within communities across the reservation (ASSIST!,
2002b).
Native American Independent Living
Services (NAILS)
3108 Main Street
Buffalo, NY 14214
Voice/TDD: (716) 836-0822
Fax: (716) 835-3967
E-mail: info@wnyilp.org
Web site: www.wnyilp.org
NAILS is a program of the Western New York Independent
Living Project in Buffalo, New York. NAILS serves the Six Nations
Confederation in the Western New York region. This federally recognized
program has successfully assisted hundreds of American Indians with
disabilities with independent living services. Services and programs
are provided to American Indians with disabilities living on three
reservations and in area cities and communities. NAILS provides
its services to members of the Onondaga, Oneida, Cayuga, Mohawk,
Seneca, and Tuscarora Tribes (Native American Independent Living
Services, 2002a).
All requests for services, communication, and information
relating to services received are kept strictly confidential. NAILS
provides advocacy, peer support, information and referral, independent
living skills instruction, mental health support groups, family
support services, service coordination/case management, and a family
reimbursement program. NAILS is considered a walls-free program
delivering its services through a mobile office service system.
Services are delivered to consumers in their homes rather than the
consumers going to an independent living center (ILC) (Native American
Independent Living Services, 2002b).
NAILS attributes its success to the following:
- NAILS hires staff from each of the nations it serves
to work in those nations, thus maintaining and developing trust
between NAILS staff and the tribes and consumers whom they serve.
- NAILS has worked to develop staff cultural competency,
helping them to understand the unique cultures of the nations
they serve as well as to understand the unique government-to-government
relationships each tribe has with state governments and with the
Federal Government, which vary. (Dougherty, 2002)
Native American Advocacy Project
(NAAP)
PO Box 527
208 South Main Street
Winner, SD 57580
Phone: (605) 842-3977; (800) 303-3975
TTY: (605) 842-3977
Fax: (605) 842-3983
E-mail: admin@sdnaap.org
Web site: www.sdnaap.org
The mission of the Native American Advocacy Project
is to empower members of the American Indian Oyate in South Dakota
who have developmental, physical, mental, and/or neurobiological
disabilities to actualize their potential by providing them with
education, training, advocacy, support, independent living skills,
and referrals to them and their Tiospaye (Native American Advocacy
Project, 2002).
NAAP is a statewide, nonprofit, consumer and family
membership organization for persons residing on and off lands of
the nine tribal nations in South Dakota. NAAP is chartered both
with the State of South Dakota and the Rosebud Sioux Tribe (where
NAAP's central office is located). NAAP is committed to providing
support to the developing role of Native American consumers (persons
with all types of disabilities) and their family members in system
planning, decisionmaking, networking, advocacy, and service development
for these populations. NAAP is also committed to being a cross-disability
organization; they are inclusive of persons with all types of disabilities,
not limiting efforts to only one or two disability groups but strengthening
efforts on behalf of all persons with disabilities. This approach
provides support to those disabilities that have been under- or
unrepresented in the disability movement (Native American Advocacy
Project, 2002a).
NAAP operates the Tateya Topa Ho (Voice of the Four
Winds) program, which is an intertribal ILC "without walls" that
provides services to individuals with disabilities living on reservations
and tribal land and in unserved areas throughout South Dakota. Services
are provided on a local basis so that individuals are able to become
independent in their own environment, rather than having to leave
their homes, families, and communities. Independent living services
and support systems are provided by Native individuals with disabilities
or local/tribal service providers. The four core independent living
services to consumers with disabilities are information and referral,
advocacy, peer support, and independent living skills training.
Independent living skills training includes such things as food
preparation and shopping, homemaking skills, budget management,
leisure activities/recreation, interpersonal skills, and communication
skills (Native American Advocacy Project, 2002b).
Resources
Independent living technical assistance organizations
provide valuable assistance to Native American tribes, Indians with
disabilities, and program and service providers. The American Indian
Disability Technical Assistance Center (AIDTAC), for example, helps
tribes create holistic plans to fill gaps in their infrastructure;
modify or create laws and policies that reduce independent living
barriers; review, modify, or create laws and policies that facilitate
employment opportunities for members with disabilities; coordinate
disability issues on reservations; expand, improve, or create services
by identifying potential links; and facilitate cooperative agreements
with nontribal organizations. In addition, AIDTAC assists nontribal
agencies in working with tribes in such a way that culture and sovereignty
are respected; provides a national network of tribal programs, nontribal
organizations, and consumers who advocate for issues related to
Indians with disabilities at the tribal, state, regional, and national
levels; and identifies, recruits, and mentors American Indians and
Alaska Natives with disabilities who are in leadership positions.
These organizations usually have organizational and funding ties
to institutions of higher learning.
Federal Funding for Independent Living Centers
Independent living services and centers are funded
through Title VII of the Rehabilitation Act. Title VII provides
funds that states may use to provide independent living services,
develop and maintain state ILCs, and improve working relations between
independent living programs, ILCs, state independent living councils,
vocational rehabilitation, supported employment, and other federal
and nonfederal programs established or supported through the Rehabilitation
Act. Funds to provide independent living services are available
through a grant mechanism. Tribal governments may apply to receive
a Title VII grant. Grants are administered through the Rehabilitation
Services Administration (NCD, 2002).
Statewide Independent Living Councils
In the independent living process, statewide independent
living councils (SILCs) are full partners with vocational rehabilitation
through the 1992 amendments to the Rehabilitation Act. Their primary
responsibility is collaboration with state vocational rehabilitation
agencies in the development of a state independent living plan,
determining how Rehabilitation Act (Part B) funds are used, monitoring
the plan, reviewing the plan, and evaluating the implementation
of the plan (Independent Living, 2002).
State governors appoint members to each SILC after
soliciting recommendations from organizations that represent a broad
range of individuals with disabilities. Those appointed are knowledgeable
and committed to disability rights and the independent living philosophy.
Tribal representation is authorized under the Rehabilitation Act.
In states where Section 121 (tribal vocational rehabilitation grant)
projects have been awarded, one member of the council is required
to be a director of one of those projects (29 U.S.C. § 796D(b)(2)(C)).
The 1992 amendments to the Rehabilitation Act seek consumer control
by requiring that the majority of an SILC's membership be individuals
with disabilities not employed by ILCs or state agencies (Independent
Living, 2002).
Local Independent Living Centers
The Rehabilitation Act of 1978 created a system of
ILCs to serve individuals with severe disabilities. Independent
living centers, or centers for independent living (CILs), are nonprofit
organizations that are typically nonresidential, consumer-controlled,
and community-based. They provide services and advocacy by and for
people with disabilities. The goal of these organizations is to
help people with disabilities to reach their maximum potential in
their families and communities. In addition, these organizations
serve as an advocate for national, state, and local independent
living issues. The 1992 amendments to the Rehabilitation Act require
that these organizations have a majority of individuals with disabilities
on their staff and governing boards.
ILCs/CILs seek to provide services to individuals
with disabilities from cross-disability and multicultural populations.
The core services that ILCs/CILs provide are
- Systems and individual advocacy
- Peer counseling
- Information and referral
- Independent living skills training
These organizations may also provide assistance in
finding and obtaining accessible housing, financial benefits counseling,
equipment loan and/or repair, personal assistance services, employment
readiness services, and services that relate to identifying, hiring,
training, and firing a personal assistant (Research and Training
Center on Independent Living, 2002).
Native American consumers and providers would benefit
by contacting the ILC/CIL nearest to their reservation. Although
most ILCs/CILs do not have a specific Indian focus, they provide
services to individuals with disabilities from cross-disability
and multicultural populations.
Independent Living Advocacy
The idea of independent living has ties to the civil
rights movements of the 1960s and 1970s. Activities included forming
community-based groups of people with disabilities working together
to identify barriers and gaps in the delivery of services. To address
these service delivery barriers, action plans were developed that
focused on educating the community and influencing policymakers
at all levels in order to introduce legislation to remove these
barriers and to change policies and regulations (Mountain State
Center for Independent Living, 2002).
The Independent Living Movement works for anti-discrimination
legislation and equal opportunity for services, allowing people
with disabilities the same degree of control over their lives as
people without disabilities, and has people with disabilities take
the initiative in the design of services, which maximizes individual
consumer choice and control. In addition, the Independent Living
Movement believes that people with disabilities must demonstrate,
to themselves and to the public, that they are fully capable of
taking the independent living cause in their own hands as the movement
is based on the principles of self-determination, self-help, and
consumer control (disAbility Resource Center, 2002).
Advocacy provides a mechanism by which consumers and
professionals can influence policy and program decisions affecting
individuals with disabilities. Self-advocacy places value on individuals
taking control of their lives and acting in their own best interest.
Self-advocacy requires an individual to be linked to information,
understand complex rules, repeatedly communicate one's needs to
an impersonal bureaucracy in an effective manner, and be persistent.
Systems advocacy, in particular, seeks to improve policy responsiveness,
increase resource sharing, and facilitate program access (Clay,
2002).
Systems advocacy may also present itself as an obstacle
for individual Indians with disabilities because of the complex
relationships between tribal governments, state governments, and
the Federal Government that make targeted advocacy efforts difficult.
However, systems advocacy has been critical to tribal governments
in their goal to exercise self-determination and in the passage
of the Self-Determination Act of 1976. Thus, through national organizations
and an ILC structure on a reservation, systems advocacy can work
to make tribal governments more responsive in addressing the needs
and issues of tribal members with disabilities without putting these
needs and issues above those of the community (Clay, 2002).
References
ASSIST! to Independence. (2002a). ASSIST to independence.
Retrieved September 26, 2002, from
www.assisttoindependence.org/ati/.
ASSIST! to Independence. (2002). Round peg in a square
hole: Independent living in Indian country. Retrieved September
26, 2002, from www.assisttoindependence.org/ati/peg.html.
ASSIST! to Independence. (2002b). Competition regarding
best CIL practices in rural outreach to emerging disability populations.
Retrieved September 26, 2002, from
www.assisttoindependence.org/ati/bestpractices.html.
Clay, Julie Anna. (2002). Native American independent
living. Retrieved October 7, 2002, from
www.aidtac.org/NativeIL.htm.
disAbility Resource Center. (2002). Independent living.
Retrieved September 19, 2002, from
www.wa_ilsc.org/independ.html.
Dougherty, Ken. (September 24, 2002). Telephone interview
by Victor Paternoster.
Impact, Inc. (2002). IL & rehabilitation paradigm
comparison. Retrieved September 19, 2002, from
www.impactcil.org/phil_history/il_rehab.htm.
Independent Living Research Utilization (ILRU). (2002).
Directory of SILCs. Retrieved September 20, 2002, from www.ilru.org/jump1.htm.
Langwell, Kathy, and Janet Sutton. (2002). People
with disabilities on tribal lands: Education, health, rehabilitation,
and independent living literature review. Washington, DC: National
Council on Disability.
Mountain State Center for Independent Living. (2002).
History of the independent living movement. Retrieved September
19, 2002, from www.mtstcil.org/skills/il-2-intro.html.
Native American Advocacy Project. (2002a). Homepage.
Retrieved September 26, 2002, from
www.sdnaap.org.
Native American Advocacy Project. (2002b). Tateya
Topa Ho. Retrieved September 26, 2002, from
www.sdnaap.org/tateya.htm.
Native American Independent Living Services (NAILS).
(2002a). NAILS. Retrieved September 26, 2002, from www.wnyilp.org/NAILS/NAILS.html.
Native American Independent Living Services (NAILS).
(2002b). Services. Retrieved September 26, 2002, from www.wnyilp.org/NAILS/services.html.
Research and Training Center on Independent Living.
(2002). Independent Living Concept Fact Sheet.
Virtual CIL. (2002). Directory of independent living
centers. Retrieved October 8, 2002, from
www.virtualcil.net/cils/.
Vocational Rehabilitation and Employment Resources
Background
Vocational rehabilitation (VR) programs vary greatly
from state to state and tribe to tribe. Tribal VR programs may differ
significantly depending on a tribe's cultural and geographical environment.
Vocational rehabilitation is more than job placement or counseling
services. It is a comprehensive service uniquely tailored to the
local culture and community needs. The George Washington University's
Department of Counseling, Human, and Organizational Studies (2002,
p. 1) suggests that rehabilitation counselors "...are concerned
with assisting individuals who have disabilities with maximizing
their potential and their independence." This assistance entails
comprehensive counseling services, which include the individual,
group, and family, in addition to multicultural counseling and addressing
the attitudinal and environmental barriers for people with disabilities.
Rehabilitation counseling may also encompass more complex services
and counseling approaches such as medical and psychosocial aspects
of disability and job development and placement, which are all regulated
by strict ethical standards for rehabilitation counselors (Department
of Counseling, Human and Organizational Studies, 2002).
Unfortunately, not all tribes have a VR program. The
U.S. Department of Education, through the Rehabilitation Act of
1973, funds tribal VR programs on a competitive basis. The average
award of this Section 121 grant program is $350,000. Because grants
are awarded on a competitive basis, tribes who may have had VR services
in the past could lose their VR funding during the next funding
cycle, and those tribes who have never had VR funding could be awarded
a grant for the first time. This situation presents a number of
problems for tribes who are attempting to provide a much-needed
service to their tribal members and descendants with disabilities.
In light of these unpredictable changes, this section
of the Toolkit will (1) familiarize the consumer with VR services
and employment resources and (2) provide ideas and resources to
existing tribal VR programs and/or to those tribes who are planning
to develop their own VR program.
VR Service and Employment Basics for the Consumer
The Rehabilitation Services Administration (RSA) was
established by Congress to protect the employment and rehabilitation
rights of people with disabilities. The RSA provides national leadership
for, and administration of, basic state and formula grant programs,
service projects, and rehabilitation training discretionary grant
programs. These programs develop and implement comprehensive and
coordinated programs of vocational rehabilitation, supported employment,
and independent living for individuals with disabilities through
services, training, and economic opportunities in order to maximize
their employability, independence, and integration into the work
place and the community (U.S. ED, 2002).
Under Title I of the Rehabilitation Act of 1973, as
amended, states receive federal grants (through the Department of
Education) to operate a comprehensive VR program. These funds are
awarded to designated state VR agencies within each state. This
state-operated program is designed to assess, plan, develop, and
provide VR services to eligible individuals with disabilities, consistent
with their strengths, resources, priorities, concerns, abilities,
capabilities, interests, and informed choice.
RSA's major Title I formula grant program provides
funds to state VR agencies to provide employment-related services
for individuals with disabilities, giving priority to individuals
who are significantly disabled (U.S. ED, 2002).
Qualifying for Vocational Rehabilitation Services
An "individual with a disability" means any individual
who
- has a physical or mental impairment that constitutes
or results in a substantial impediment to employment for the individual
and
- can benefit from VR services to achieve an employment
outcome.
To be eligible for VR services, an individual must
- be an "individual with a disability," as defined
above and
- require VR services to prepare for, secure, retain
or regain employment.
(Minnesota Workforce Center, 2002)
RSA is unique in that it specifically addresses drug
or alcohol addiction (Section 504 covers former users and those
in recovery programs and not currently using drugs or alcohol),
in addition to emotional and psychological problems, as a disability.
This recognition is important when assessing and serving the needs
of AI/AN communities.
Ticket to Work
On the employment front, a portion of President Bush's
New Freedom Initiative announced on February 1, 2001, included swift
implementation of the Ticket to Work Incentives Improvement Act
of 1999. The goal of the program is "to give disability beneficiaries
the opportunity to achieve steady, long-term employment by providing
them greater choices and opportunities to go to work if they choose
to do so" (Social Security Administration [SSA], 2002). The legislation
also "removes barriers that previously influenced people's choices
between healthcare coverage and work" (SSA, 2002). By 2003, all
states and territories will have this program implemented.
Ticket to Work
Phone: (866) YOURTICKET; (866) 968-7842
TDD: (866) TDD2WORK; (866) 833-2967
Web site: www.yourtickettowork.com
Employment Protections
Titles I and II of ADA also specifically address employment
issues for individuals with disabilities. However, Title I categorically
excludes tribes as employers (42 U.S.C. § 12111(5)(B)(i)). This
exclusion applies to the sovereign status of tribes. Other businesses
on the reservation do not necessarily fall under this categorical
exclusion. Title I requires employers with 15 or more employees
to provide qualified individuals with disabilities with an equal
opportunity to benefit from the full range of employment-related
opportunities available to others. For example, it prohibits discrimination
in recruitment, hiring, promotions, training, pay, social activities,
and other privileges of employment. It restricts questions that
can be asked about an applicant's disability before a job offer
is made, and it requires that employers make reasonable accommodation
for the known physical or mental disability of otherwise qualified
individuals with disabilities, unless it results in undue hardship.
Title II covers all activities of state and local governments regardless
of the government entity's size or receipt of federal funding. Title
II requires that state and local governments give people with disabilities
an equal opportunity to benefit from all of their programs, services,
and activities (e.g., public education, employment, transportation,
recreation, health care, social services, courts, voting, and town
meetings).
State and local governments are also required to follow
specific architectural standards in the new construction and alteration
of their buildings. They also must relocate programs or otherwise
provide access in inaccessible older buildings and communicate effectively
with people who have hearing, vision, or speech disabilities. Public
entities are not required to take actions that would result in undue
financial and administrative burdens. They are required to make
reasonable modifications to policies, practices, and procedures
where necessary to avoid discrimination, unless they can demonstrate
that doing so would fundamentally alter the nature of the service,
program, or activity being provided.
How to File Complaints
The Rehabilitation Act prohibits discrimination based
on disability in programs conducted by federal agencies, including
programs receiving federal funds and in federal employment. In determining
employment discrimination, the Rehabilitation Act uses the same
standards as Title I of ADA.
Section 121 of the Rehabilitation Act authorizes the
RSA to make grants to tribes for the purpose of vocational rehabilitation
services. Tribes accepting these grants, and generally other federal
funds, agree to comply with federal law. However, this agreement
may not amount to a waiver of sovereign immunity. Sovereign immunity
would prevent private parties from seeking redress in federal or
state court. However, sovereign immunity may not protect tribes
from the Federal Government enforcing disability legislation. For
nontribal businesses and services, federal law still applies.
Charges of employment discrimination on the basis
of disability may be filed at any U.S. Equal Employment Opportunity
Commission (EEOC) field office. Field offices are located in 50
cities throughout the United States and are listed in most telephone
directories under "U.S. Government." For the appropriate EEOC field
office in your geographic area, contact
Phone: (800) 669-4000
TTY/TDD: (800) 669-6820
Web site: www.eeoc.gov
Publications and information on EEOC-enforced laws
may be obtained by calling
Phone: (800) 669-3362
TTY/TDD: (800) 800-3302
Information on how to accommodate a specific individual
with a disability is available through the Job Accommodation Network.
Complaints of Title II violations may be filed with
DOJ within 180 days of the date of discrimination. In certain situations,
cases may be referred to a mediation program sponsored by the Department.
The Department may bring a lawsuit when it has investigated a matter
and has been unable to resolve violations. For more information,
contact
Disability Rights Section; Civil Rights Division;
U.S. Department of Justice
PO Box 66738
Washington, DC 20035-6738
www.usdoj.gov/crt/ada/adahom1.htm
Phone: (800) 514-0301
TTY: (800) 514-0383
The NCD, in collaboration with the National Urban
League, has prepared "A Guide to Disability Rights Laws," which
provides a summary of federal civil rights laws that ensure equal
opportunity for people with disabilities. The guide is available
on NCD's Web site at www.ncd.gov/newsroom/publications/disabilityrights.html/.
Consumer Disability Resources
"During the period of October 1994 to January 1995,
about one in three American Indians and Alaskan Natives aged 15
and over reported having a disability, and one in seven reported
having a 'severe' disability" (CBAIP, 2002). These statistics raise
serious concerns, considering a tribe's ability to provide adequate
resources and services for tribal members and descendants with disabilities.
High unemployment rates on reservations, which range from 33.5 percent
to 52 percent, make it challenging for American Indians with disabilities
to find employment (CBAIP, 2002).
According to a review of VR research related to American
Indians, "...over half (54 percent) of the studies cited indicated
that American Indians are an under served population due to cultural
and socioeconomic barriers, which include geographic isolation,
poverty, lack of transportation, language differences, and value
differences" (CBAIP, 2002). Almost half the studies "cited the need
to increase VR services to American Indians with disabling conditions"
The unique cultural and geographical characteristics of many tribes
present challenges when attempting to serve its members. "A survey
of State VR administrators revealed that rehabilitation barriers
experienced by reservation-based American Indians with disabilities
include (a) cultural differences, (b) geographic isolation, and
(c) lack of employment opportunities" (CBAIP, 2002).
In 1994, the American Indian Disability Legislation
Project conducted a survey of 143 AI and AN tribes to obtain information
on the accessibility of public buildings, availability of rehabilitation
services, and tribal awareness of disability laws. Surveyed tribes
were also asked to report on the frequency of disabling conditions.
Among the conditions most frequently cited among tribes in the continental
United States were diabetes (29 percent), emotional disabilities
(22 percent), and learning disabilities (11 percent). Among tribes
in Alaska, emotional disabilities (31.3 percent), learning disabilities
(17 percent), and deafness or hardness of hearing (17 percent) were
the most frequently reported disabling conditions (American Indian
Disability Legislation Project, 2000).
American Indian Rehabilitation Research and Training
Center (AIRRTC) analyses found that alcohol abuse or dependence
was the most common cause of disability among AI/ANs represented
in the 1997 RSA database. Approximately 11 percent of AI/AN clients
had a major diagnosis of alcohol abuse compared with only 4 percent
of White, nearly 6 percent of Black, and less than 2 percent of
Asian clients. Although the prevalence did not vary substantially
by race, learning disabilities were found to be the second most
frequent major diagnosis (9 percent) among AI/AN clients represented
in the RSA database (Schacht, Gahungu, White, LaPlante, and Menz,
2000).
Mental health problems, along with alcohol and substance
abuse, present some of the greatest challenges to Indian communities.
The following subsections provide general directions in seeking
services for some of the more prevalent forms of disabilities in
Indian country. Unfortunately, it was not possible to list all of
the services made available for those seeking assistance with mental
health and alcohol and substance abuse treatment.
Mental Health
According to a report of the U.S. Department of
Health and Human Services Substance Abuse and Mental Health Services
Administration (SAMHSA), Native Americans are more likely to experience
mental disorders than other racial and ethnic groups in the United
States. "Of great concern is the high prevalence of depression,
anxiety, substance abuse, violence, and suicide. Other common mental
health problems of Native American individuals are psychosomatic
symptoms and emotional problems resulting from disturbed interpersonal
and family relationships"(SAMHSA, p. 11). According to SAMHSA, failure
to address the "historic trauma" and culture of Native Americans
in health care and other areas "will only add to the oppression
experienced by Native Americans for decades"(ibid, pp. 11-12). Nonetheless,
disentangling socioeconomic factors, cultural influences, civil
rights issues, and the effect of race/ethnicity is difficult for
any health condition, particularly mental health disorders.
-Vernellia Randall (2001)
The devastating effects of historic trauma on Indian
communities have left a large population of Indian people with what
seems like overwhelming obstacles to face in an attempt to improve
their quality of life. Depression and anxiety, along with psychosomatic
illnesses, can create huge barriers to employment. The RSA specifically
addresses this critical aspect of employability.
Where Can I Get Help? Some
tribes support their own mental health services. These services
may reflect the unique cultural background of the local tribal community.
Many tribal mental health programs are beginning to understand the
need for and effectiveness of utilizing culturally appropriate approaches
toward healing. If your tribe does not support a mental health program,
it would be advisable to contact your local county mental health
service. Depending on your need and financial status, mental health
services can be provided for free or on a sliding-fee scale that
will fit your financial status.
Alcohol and Substance Abuse
In 1999, there were about 43,000 American Indian
and Alaska Native admissions to publicly funded substance abuse
treatment facilities. A higher proportion of American Indian/Alaska
Native treatment admissions were female (35 percent) than among
the total treatment population (30 percent). Among American Indians/Alaska
Natives, admissions for alcohol abuse declined by 11 percent between
1994 and 1999, while admissions for illicit drugs increased by 78
percent.
-Office of Applied Studies,
Substance Abuse and Mental
Health Services Administration (2002)
As a result of over 500 years of cultural oppression
and a brutal colonization process, nations of Indian people have
been affected emotionally and spiritually. Each successive generation
is embroiled in the battle with alcohol and substance abuse; these
substances are often used to deal with the intergenerational pain
associated with oppression.
Section 706 of the Rehabilitation Act recognizes the
disabling effects of alcohol and substance abuse in our society
and thereby makes provisions for employment assistance (www.eeoc.gov/laws/rehab.html).
Where Can I Get Help?
Many tribes offer alcohol and substance abuse program services to
some degree. Some tribes may have extensive services while others
may have none. The first step is to check with your tribe to see if
they offer any alcohol and substance abuse services. If your tribe
provides vocational rehabilitation, this program would most likely
have the information you will need. Intervention
may include inpatient treatment or outpatient treatment depending
on the severity of abuse. Many treatment centers are beginning to
utilize culturally appropriate approaches toward healing. If your
tribe does not provide chemical dependency counseling or referral
services, you may contact your local county agencies. There are
many forms of payment, and each is unique to the person's circumstances.
Indian Health Services may assist you in this respect. Most important,
do not give up. The process can sometimes be quick while at other
times frustrating.
Spinal Cord Injury
"Approximately 200,000 individuals in the United States
have spinal cord injuries. Every year, approximately 10,000 people
sustain new spinal cord injuries" (Paralyzed Veterans of America,
2002). Most of these people are injured in auto and sports accidents,
falls, and industrial mishaps. An estimated 60 percent of these
individuals are 30 years old or younger, and the majority of them
are men. In Indian country it is much the same.
By nature, a spinal cord injury (SCI) has a very sudden
impact on an individual, physically as well as emotionally and socially.
It is normal to have questions about how your life will be affected.
Remember, though, that many other people have experienced SCIs and
have continued to lead happy and productive lives. In order to do
so, you must become an active participant in your recovery. The
resources described in the following pages are just the tip of the
iceberg. Many people and organizations are available to help (Paralyzed
Veterans of America, 2002).
For More Information Contact:
National Rehabilitation Hospital
102 Irving Street, NW
Washington, DC 20010
Phone: (202) 877-1000
Web site: info@nrhrehab.org
The National Rehabilitation Hospital specializes in
treating persons with physical disabilities caused by spinal cord
and head injuries, stroke, arthritis, amputation, multiple sclerosis,
post-polio syndrome, and other neurological and orthopedic conditions.
National Spinal Cord Injury Association
6701 Democracy Boulevard
Suite 300-9
Bethesda, MD 20817
Phone: (301) 588-6959
Fax: (301) 588-9414
Web site: www.spinalcord.org/index.html#toc
The National Spinal Cord Injury Association is the
nation's oldest and largest civilian organization dedicated to helping
the hundreds of thousands of Americans coping with the results of
spinal cord injury and disease.
Paralyzed Veterans of America
801 18th Street NW
Washington, DC 20006-3517
Phone: (800) 424-8200
Web site: www.pva.org/index.htm
The Paralyzed Veterans of America, a congressionally
chartered veterans service organization founded in 1946, has developed
a unique expertise on a wide variety of issues involving the special
needs of our members-veterans of the armed forces who have experienced
spinal cord injury or dysfunction.
Shepherd Spinal Cord Injury Center
2020 Peachtree Road NW
Atlanta, GA 30309-1402
Phone: (404) 352-2020 (Main)
E-mail: Webmaster@shepherd.org
Atlanta-based catastrophic care hospital treats people
with spinal cord injuries, acquired brain injuries, multiple sclerosis,
and other neuromuscular illnesses and urological problems.
Spina Bifida Association of America (SBAA)
4590 MacArthur Boulevard NW, Suite 250
Washington, DC 20007-4226
Phone: (800) 621-3141or (202) 944-3285
Fax: (202) 944-3295
E-mail: sbaa@sbaa.org
SBAA addresses the specific needs of infants, children,
and adults with spina bifida, their families, and professionals
who serve them. As the national representative of over 70 chapters,
it provides information and referral services, publishes materials,
funds research, provides training, and conducts individual and systems
advocacy.
Spinal Cord Injury Information Network
E-mail: sciWeb@uab.edu
This service, based at the University of Alabama's
Spinal Rehabilitation Center, provides information and resources
for people with spinal cord injuries.
Traumatic Brain Injury
There are a variety of causes of traumatic brain injury
(TBI) ranging from a sudden physical assault to shaken baby syndrome.
It can affect individuals of all ages and the impact of the injury
can range from mild concussion to coma or even death. Symptoms of
a TBI are also varied. These may include headache, nausea, confusion
or other cognitive problems, a change in personality, depression,
irritability, and other emotional and behavioral problems. Some
people may have seizures as a result of a TBI (NINDS, 2002).
The resources and organizations that follow offer
information and services to individuals and family members of individuals
who have experienced a TBI. As in the previous case, more resources
are available, but this is a starting point.
For More Information Contact:
Acoustic Neuroma Association
600 Peachtree Parkway, Suite 108
Cumming, GA 30041
Phone: (770) 205-8211
Fax: (770) 205-0239
E-mail: anausa@aol.com
Web site: www.anausa.org
Brain Injury Association
105 North Alfred Street
Alexandria, VA 22314
Phone: (703) 236-6000; (800) 444-6443
Fax: (703) 236-6001
E-mail: publicrelations@biausa.org
Web site: www.biausa.org
Brain Trauma Foundation
523 East 72nd Street, 8th Floor
New York, NY 10021
Phone: (212) 772-0608
Fax: (212) 772-0357
E-mail: info@braintrauma.org
Web site: www.braintrauma.org
Family Caregiver Alliance
690 Market Street, Suite 600
San Francisco, CA 94104
Phone: (415) 434-3388; (800) 445-8106
Fax: (415) 434-3508
E-mail: info@caregiver.org
Web site: www.caregiver.org
National Rehabilitation Information
Center (NARIC)
4200 Forbes Boulevard, Suite 202
Lanham, MD 20706-4829
Phone: (301) 562-2400; (800) 346-2742
Fax: (301) 562-2401
Web site: www.naric.com
National Stroke Association
9707 East Easter Lane
Englewood, CO 80112-3747
Phone: (303) 649-9299; (800) STROKES (787-6537)
Fax: (303) 649-1328
Web site: www.stroke.org
National Institute on Disability
and Rehabilitation Research (NIDRR)
600 Independence Avenue SW
Washington, DC 20013-1492
Phone: (202) 205-8134
Web site: www.ed.gov/offices/OSERS/NIDRR
Tribal VR Program Resources
The organizations that follow offer resources, training,
and technical assistance for individuals, tribes, and organizations
planning to develop, support, and sustain VR programs.
Office of Special Education and Rehabilitative Services
(Region X)
Department of Education
Rehabilitation Services Administration
915 2nd Avenue, Room 2848
Seattle, WA 98174
Phone: (206) 220-7847
Fax: (206) 220-7842
Web site: www.ed.gov
The Department of Education, Special Education, and
Rehabilitation Services provides mentoring and oversight to programs
funded in Region X as well as to tribal programs on a national basis.
Regional responsibilities include VR agencies in the states of Oregon,
Washington, Idaho, and Alaska. In addition, staff provides oversight,
mentoring, and technical assistance to tribal VR programs across
the country (there are only 69 VR programs yet more than 560 federally
recognized tribes). American Indian rehabilitation programs function
comparably to the state VR agencies except their services are provided
to members of tribes who have disabilities and live on or near a
reservation. The Region X Rehabilitation Services program has a
rehabilitation services specialist with life experiences that provide
intimate knowledge of tribal communities and tribal governments
as well as federal and tribal barriers, which is particularly helpful
for American Indian people in need of services.
American Indian Rehabilitation Research and Training
Center
Institute for Human Development
Northern Arizona University
PO Box 5630
Flagstaff, AZ 86011-5630
Phone: (928) 523-4791
Fax: (928) 523-9127
TDD: (928) 523-1695
Web site: www.nau.edu/ihd/airrtc
The mission of AIRRTC is to improve the quality of
life for American Indians and Alaska Natives with disabilities through
the conduct of research and training that will result in culturally
appropriate and responsive rehabilitation services; to improve employment
outcomes and facilitate access to services for American Indians
and Alaska Natives with disabilities; and to increase the participation
of American Indians and Alaska Natives in the design and delivery
of rehabilitation services for employment outcomes.
Certain basic principles represent the philosophy
of AIRRTC and the guidelines by which AIRRTC will operate over the
next five years. These principles are the result of AIRRTC's long-term
involvement with American Indian rehabilitation and are consistent
with the policies of RSA and the National Institute on Disability
and Rehabilitation Research (NIDRR) and legislation such as the
Rehabilitation Act, as amended.
Consortium of Administrators for Native American Rehabilitation
AIRRTC/CANAR Training and Technical Assistance Activities
Institute for Human Development
Northern Arizona University
PO Box 5630
Flagstaff, AZ 86011-5630
Phone: (928) 523-4791
Fax: (928) 523-9127
TDD: (928) 523-1695
Web site: ww.nau.edu/ihd/airrtc
After the passage of the Rehabilitation Act Amendment
of 1992, considerable actions were taken to enhance cultural competence
in rehabilitation service delivery, increase outreach and services
to persons with disabilities from diverse populations, and develop
recruitment strategies of persons from diverse backgrounds to work
in areas of rehabilitation. As a result of discussion and subsequent
legislation, on January 22, 1993, the Consortia of Administrators
for Native American Rehabilitation (CANAR) was established; it functions
as a national platform for advocating the needs for effective rehabilitation
service delivery for American Indians and Alaska Natives with disabilities
who reside on or near federal or state reservations, Alaska Native
villages, rancheros, and pueblos. CANAR addresses the concerns,
abilities, capabilities, and informed choice of AI/AN consumers,
so that they may prepare for and engage in gainful employment, including
self-employment, telecommuting, and business ownership. CANAR continues
to form collaborative working relationships with AIRRTC, state rehabilitation
agencies, Regional Rehabilitation Continuing Education Programs
(RRCEPs), tribal health and social service programs, capacity building
projects, and federal service agencies such as the U.S. Department
of Education and U.S. Department of Labor (Northern Arizona University,
2002).
Capacity Building for American Indians Project
American Indian Rehabilitation Research and Training
Center
Capacity Building for American Indians Project
Northern Arizona University
PO Box 5630
Flagstaff, AZ 86011-5630
Phone: (928) 523-4801
TTY: (928) 523-1695
Fax: (928) 523-9127
Web site: www.nau.edu/ihd/CBAIP/
The AIRRTC Capacity Building for American Indians
Project (CBAIP) is housed at the Institute for Human Development
on the campus of Northern Arizona University. The mission of CBAIP
is to enhance the capacity building and increase participation of
American Indians and Alaska Natives in competition for discretionary
rehabilitation grants, contracts, and cooperative agreements under
Titles I through VIII of the Rehabilitation Act of 1973, as amended.
Many American Indians and Alaska Natives who are eligible
to compete for discretionary rehabilitation grants, contracts, and
cooperative agreements funded under the Rehabilitation Act of 1973,
as amended, are not aware of these funding opportunities, or have
limited knowledge regarding grant proposal development and the VR
system. By the very nature of CBAIP, funded under the Capacity Building
for Traditionally Underserved Populations Program, the target population
of the Project includes traditionally under-represented groups:
American Indians, Alaska Natives, minority entity representatives,
and American Indians and Alaska Natives with disabilities. CBAIP
ensures equal access and treatment for eligible project participants
who are members of groups that have traditionally been under-represented.
National Rehabilitation Association
633 South Washington Street
Alexandria, VA 22314
Phone: (703) 836-0850
Fax: (703) 836-0848
TDD: (703) 836-0849
E-mail: info@nationalrehab.org
Not long after Congress passed the National Rehabilitation
Act of 1920, the National Rehabilitation Association (NRA) began
its commitment to persons with disabilities. The NRA is the oldest
and strongest advocate for the rights of persons with disabilities.
Its mission is to provide advocacy, awareness, and career advancement
for professionals in the fields of rehabilitation. Members of the
NRA include rehab counselors; physical, speech, and occupational
therapists; job trainers; consultants; independent living instructors;
and other professionals involved in the advocacy of programs and
services for people with disabilities.
Seven core values provide the foundation for NRA services
and programs:
1. All people
2. Professions in rehabilitation
3. Visionary leadership
4. Responsible resource management
5. Advocacy
6. Personal and professional enrichment
7. Relationships built on trust and integrity
In keeping with this commitment, the NRA has contributed
and supported legislation such as the Rehabilitation Act of 1973
and subsequent reauthorizations, TJTC, the Job Training Partnership
Act, and ADA. The association's prominence and longevity are recognized
by our nation's leaders and give our members a vital role in shaping
rehabilitation policy.
National Association of Multicultural Rehabilitation
Concerns
633 South Washington Street
Alexandria, VA 22314
Phone: (703) 836-0850
Fax: (703) 836-0848
Web site: www.nationalrehab.org/
The National Association of Multicultural Rehabilitation
Concerns is a progressive association of individuals whose goal
is to effect positive change and create opportunities for multicultural
populations in the field of rehabilitation. Its philosophy is action-oriented
and incorporates the following goals:
- To provide professional seminars, workshops, and
training that focus on cultural diversity in rehabilitation and
enhanced service delivery to multicultural persons with disabilities.
- To advocate, propose, and support legislation
that addresses the needs of multicultural persons with disabilities
and their communities.
- To encourage and recruit people of color to enter
the field of rehabilitation.
- To provide current information on issues at the
national, state, and local levels.
- To educate the multicultural community on services
available to persons with disabilities and their families.
References
American Indian Disability Legislation Project, Research
and Training Center on Rural Rehabilitation. (January 2000). Montana
University Rural Institute on Disabilities.
Capacity Building for American Indians Project (CBAIP).
(2002). Retrieved October 3, 2002, from
www.nau.edu/ihd/CBAIP/needfor.html.
Center for Psychiatric Rehabilitation, Boston University.
(1997). Retrieved December 12, 2002, from
www.bu.edu/cpr/reasaccom/whatis-psych.html.
Clay, J. (1992). A profile of independent living services
for American Indians with disabilities living on reservations. Missoula:
University of Montana Rural Institute.
Department of Counseling, Human and Organizational
Studies, George Washington University. (2002). Introduction to the
Field of Rehabilitation Counseling. (2002). Retrieved December 22,
2002, from
www.gwu.edu/~chaos/rehab/Rc_def.htm.
Minnesota Workforce Center. (2002). Vocational rehabilitation
services. Retrieved December 30, 2002, from www.mnworkforcecenter.org/rehab/vr/definition.htm.
National Institute of Neurological Disorders and Stroke
(NINDS). (2002). Traumatic brain injury information page. Retrieved
January 6, 2002, from www.ninds.nih.gov/index.htm.
Northern Arizona University. (2002). Consortia of
administrators for Native American rehabilitation. Retrieved October
3, 2002, from www.nau.edu/~ihd/CANAR/history.html.
Office of Applied Studies, Substance Abuse and Mental
Health Services Administration (SAMHSA). (February 1, 2002). Dasis
Report: American Indian and Alaska Natives in Substance Abuse Treatment:
1999. Washington, DC: SAMHSA.
Office for Students with Disabilities. (1997). Portland
Community College. Retrieved October 3, 2002, from
http://spot.pcc.edu/osd/504.htm#protected
Paralyzed Veterans of America. (2002). Retrieved December
16, 2002, from
www.pva.org/NEWPVASITE/publications/onlinepubs.htm.
Randall, Vernellia R. (2001). Profile of Indian/Eskimo
Communities, Chapter 2: Background: Disparity, Discrimination and
Diversity in Health Care; Volume I, The Role of Governmental and
Private Health Care Programs and Initiatives, The Health Care Challenge:
Acknowledging Disparity, Confronting Discrimination, and Ensuring
Equality, Vol. I. (September 1999). Washington, DC: U.S. Commission
on Civil Rights. Retrieved December 27, 2002 from http://academic.udayton.edu/health/08civilrights/01-02-13ProfileNative.htm.
Schacht, R., A. Gahungu, M. White, M. LaPlante, and
F. Menz. (September 2000). An Analysis of Disability and Employment
Outcome Data for American Indians and Alaska Natives. American Indian
Rehabilitation Research and Training Center.
Social Security Administration. (2002). Fact Sheet:
Effect of the Ticket to Work Program on the Use of Alternative Participants
to Provide Vocational Rehabilitation Services to People with Disabilities.
Retrieved December 2002 from www.ssa.gov/work/Service
Providers/altpartprogfactsheet.html.
U.S. Department of Education (U.S. ED) Rehabilitation
Services Administration. (2002). About RSA. Retrieved October 3,
2002, from www.ed.gov/offices/OSERS/RSA/About/.
U.S. Department of Justice, Civil Rights Division,
Disability Rights Section. (August 2001). A guide to disability
rights laws. Retrieved September 27, 2002, from www.usdoj.gov/crt/ada/cguide.htm.
U.S. Department of Labor On-line. (2002). JAN's Web
site portal for individuals. Retrieved October 3, 2002, from www.jan.wvu.edu
Assistive Technology Background
Assistive technology is simple or complex technology
enabling individuals with disabilities to live more independently,
productively, and enjoyably. Assistive technology increases one's
ability to learn, work, compete, and interact with others (Washington
Assistive Technology Alliance, 2002).
Assistive technology products can improve and strengthen
physical or mental functioning, help overcome a disability, assist
in preventing the worsening of a condition, improve learning capacity,
and act as a replacement for missing limbs. These products may include
communication aids, computer access aids, daily living aids, education
and learning aids, home and work environment aids, hearing and listening
aids, mobility and transportation aids, seating and positioning
aids, vision and reading aids, recreation and leisure aids, prosthetics,
orthotics, and ergonomic equipment (Rehabtool.com, 2002).
Assistive technology services help to support individuals
with disabilities and their caregivers in selecting, acquiring,
and/or using adaptive devices, which may include functional evaluations,
device training, product demonstration, and the purchasing and leasing
of equipment (Rehabtool.com, 2002). The Washington Assistive Technology
Alliance provides the following definitions to help one understand
the categories and types of assistive technology available for people
with disabilities.
Aids for Daily Living: Self-help
aids for use in activities such as eating, bathing, cooking, dressing,
toileting, home maintenance, etc.
Augmentative or Alternative Communication
(AAC): Electronic and nonelectronic devices that provide
a means for expressive and receptive communication for persons with
limited or no speech.
Aids for Deaf or Hard of Hearing:
Aids for specific populations including assistive listening devices
(infrared, FM loop systems), hearing aids, TTYs, visual and tactile
alerting systems, etc.
Aids for Blind or Low Vision: Aids
for specific populations including magnifiers, Braille or speech
output devices, large print screens, closed circuit television for
magnifying documents, etc.
Computer Access: Input and
output devices (voice, Braille), alternate access aids (headsticks,
light pointers), modified or alternate keyboards, switches, special
software, etc., that enable persons with disabilities to use a computer.
This category includes speech recognition software.
Environmental Control Systems:
Primarily electronic systems that enable someone with limited mobility
to control various appliances, electronic aids, security systems,
etc., in their room, home, or other surroundings.
Home/Worksite Modifications: Structural
adaptations or fabrications in the home, worksite, or other area
(ramps, lifts, bathroom changes) that remove or reduce physical
barriers for an individual with a disability.
Prosthetics and Orthotics:
Replacement, substitution, or augmentation of missing or malfunctioning
body parts with artificial limbs or other orthotic aids (splints,
braces, etc.). There are also prosthetics to assist with cognitive
limitations or deficits, including audiotapes or pagers (that function
as prompts or reminders).
Seating and Positioning:
Accommodations to a wheelchair or other seating system to provide
greater body stability, trunk/head support and an upright posture,
and reduction of pressure on the skin surface (cushions, contour
seats, lumbar).
Service Animals: The Americans
with Disabilities Act defines a service animal as any guide dog
(for individuals who are blind or have low vision), signal dog (for
individuals who are deaf or hard of hearing), or other animals individually
trained to provide assistance to an individual with a disability.
Wheelchairs/Mobility Aids:
Manual and electric wheelchairs, mobile bases for custom chairs,
walkers, three-wheel scooters, and other utility vehicles for increasing
personal mobility.
Vehicle Modifications: Adaptive
driving aids, hand controls, wheelchair and other lifts, modified
vans, or other motor vehicles used for personal transportation.
Model Approaches
In the United States, two Indian organizations are
providing assistive technology devices and services specifically
to Native Americans. Each of the programs that follow exemplifies
unique approaches to providing the core independent living services
(individual and systems advocacy, peer counseling, information and
referral, and independent living skills training) as well as additional
services designed to meet the needs of the Indian communities it
serves.
ASSIST! to Independence
Regional Resource Center for Assistive Technology
PO Box 4133
Tuba City, AZ 86045
Phone: (928) 283-6261; (888) 848-1449
Voice/TTY: (928) 283-6672
Fax: (928) 283-6284
E-mail: assist@cybertrails.com
Web site: www.assisttoindependence.org
Mike Blatchford, Executive Director
ASSIST! to Independence is a community-based nonprofit
agency that was established by and for people with disabilities
and chronic health conditions to help fill some of the gaps in service
delivery. The agency serves as a consumer-driven community action
program to facilitate general awareness of disability-related issues,
community access, education, information sharing, assistive technology
access, advocacy, and independent living that is relevant and culturally
appropriate for American Indians. ASSIST! currently serves as the
umbrella organization for five major programs: (1) The Center for
Independent Living; (2) The Regional Resource Center for Assistive
Technology; (3) The Special Needs Toy Lending Library; (4) The Functional
Assessment Clinic; and (5) The Sensory Integration Program. The
organization is located in the western part of the Navajo Reservation
in Tuba City, Arizona, and its programs provide services primarily
to the Navajo, Hopi, and Southern Paiute Reservations; however,
anyone needing information and assistance in the northern part of
the state is welcome to request services or information (ASSIST!,
2002a).
ASSIST! operates the Technology Resource Center, providing
access to both low-tech and high-tech devices for people of all
ages and varying abilities. Opportunities for hands-on exploration
allow individuals to make more informed choices about the technology
interventions that will work best for them. The ability to borrow
a device to "try out" in the appropriate setting also provides greater
opportunity for proper device selection and success. Most devices
found in the Technology Resource Center are available for short-
or long-term loan (ASSIST!, 2002b).
The Technology Resource Center also maintains an inventory
of school-based assistive technology through a collaborative partnership
with Southwest Human Development. This technology is available for
professionals working within school districts who need access to
assistive devices for evaluation purposes (ASSIST!, 2002b).
The following services are provided through the Center
for Assistive Technology:
- Equipment demonstration
- Short-term or long-term assistive technology equipment
loans
- Training and education
- Information and referral
- Advocacy
- Technical assistance
- Comprehensive evaluations and assessments
In addition, the Resource Center participates as a
member of the Navajo Nation Assistive Technology Consortium, which
is actively working to develop the availability of more assistive
technology resources on or near the Navajo Nation (ASSIST!, 2002b).
Native American Advocacy Project
(NAAP)
Tiwahe Access (Family Access) Program
PO Box 527
208 South Main Street
Winner, SD 57580
Phone: (605) 842-3977; (800) 303-3975
TTY: (605) 842-3977
Fax: (605) 842-3983
E-mail: admin@sdnaap.org
Web site: www.sdnaap.org
Marla Bull Bear, Executive Director
The mission of the Native American Advocacy Project
is to empower members of the American Indian Oyate in South Dakota
who have developmental, physical, mental, and/or neurobiological
disabilities to actualize their potential. NAAP provides education,
training, advocacy, support, independent living skills, and referrals
to them and to their Tiospaye. NAAP is a statewide, nonprofit, consumer
and family membership organization for persons residing on and off
lands of the nine tribal nations in South Dakota. NAAP is chartered
with both the State of South Dakota and the Rosebud Sioux Tribe
(where NAAP's central office is located). NAAP is committed to providing
support to the developing role of Native American consumers (persons
with all types of disabilities) and their family members in system
planning, decisionmaking, networking, advocacy, and service development
for these populations. NAAP is also committed to being a cross-disability
organization; they are inclusive of persons with all types of disabilities,
not limiting efforts to only one or two disability groups but strengthening
efforts on behalf of all persons with disabilities. This approach
allows support to those persons with disabilities that have been
under- or unrepresented in the disability movement (Native American
Advocacy Project, 2002a).
NAAP operates the Tiwahe Access (Family Access) home
modifications and adaptive devices program, providing ramps, bathroom
modifications, kitchen modifications, and helpful tools to increase
independence. This program provides home modifications and devices
that are necessary for overcoming barriers that substantially limit
a consumer's ability to function independently within a family or
community and/or to obtain, maintain, or advance in employment.
Some of the devices provided are reachers, doorbell indicators,
eating utensils, personal hygiene and dressing aids, driving hand
controls, environmental controls, and telecommunications adaptive
devices. Home modifications include ramps, widened doorways, and
bathroom and kitchen modifications (Native American Advocacy Project,
2002b).
Resources
On August 19, 1988, President Ronald Reagan signed
into law the Technology-Related Assistance for Individuals with
Disabilities Act (P.L. 100-407), also known as the Tech Act. In
1994, the Tech Act (P.L. 103-218) was reauthorized by President
Clinton. In 1998, it was reauthorized by the Assistive Technology
Act (P.L. 105-394). This Act provides funding in the development
of statewide, consumer-responsive information and training programs
for people with disabilities (RESNA, 2002b). Indians with disabilities
and providers may benefit by contacting their State Assistive Technology
Program.
State Assistive Technology Financial Loan Programs
and Other Loan Programs Serving Native Americans
Funded under Title III, Alternative Financing Programs,
of the Assistive Technology Act of 1998, the State Assistive Technology
Financial Loan Programs are administered by NIDRR. These and other
assistive technology loan programs may be of assistance to Indians
with disabilities in obtaining financial loans to purchase needed
assistive technology. (RESNA, 2002).
General Assistive Technology Resources Available to
Native Americans
Researching and learning about assistive technology
products and services can become an overwhelming experience. Fortunately,
private and public assistive technology resources are available
that provide valuable information and guidance in an organized fashion.
Assistive Technology Advocacy
Advocacy provides a mechanism through which consumers
and professionals can influence policy and program decisions affecting
individuals with disabilities. Self-advocacy places value on individuals
taking control of their lives and acting in their own best interest
(see Advocating Change section). Self-advocacy requires an individual
to be linked to information, understand complex rules, repeatedly
communicate one's needs to an impersonal bureaucracy in an effective
manner, and be persistent. Systems advocacy, in particular, seeks
to improve policy responsiveness, increase resource sharing, and
facilitate program access (Clay, 2002).
Systems advocacy may also present itself as an obstacle
for individual Indians with disabilities due to the complex relationships
between tribal governments, state governments, and the Federal Government,
making targeted advocacy efforts difficult. However, systems advocacy
has been critical to tribal governments in their goal to exercise
self-determination and in the passage of the Self-Determination
Act of 1976. Thus, through national organizations and an independent
living center structure on a reservation, systems advocacy can work
to make tribal governments more responsive in addressing the needs
and issues of tribal members having disabilities without putting
these needs and issues above those of the community (Clay, 2002).
References
ASSIST! to Independence. (2002a). National Council
on Independent Living best practices for consumer involvement in
assistive technology programs Assistive Technology Survey - 2002.
Retrieved September 26, 2002, from www.assisttoindependence.org/ati/survey.html.
ASSIST! to Independence. (2002b). The Regional Resource
Center for Assistive Technology. Retrieved September 26, 2002, from
www.assisttoindependence.org/ati/resource.html.
Clay, Julie Anna. (2002). Native American independent
living. Retrieved October 7, 2002, from
www.aidtac.org/NativeIL.htm.
DisabilityResources.org. (2002). Assistive technology--general.
Retrieved September 25, 2002, from
www.disabilityresources.org/AT-GENERAL.html.
Native American Advocacy Project. (2002a). Homepage.
Retrieved September 26, 2002, from
www.sdnaap.org.
Native American Advocacy Project. (2002b). Tiwahe
Access. Retrieved September 26, 2002, from
www.sdnaap.org/tiwahe.htm.
Neighborhood Legal Services, Inc. (2002a). Description
of the National Advocacy Project. Retrieved September 27, 2002,
from www.nls.org/natdisc.htm.
Neighborhood Legal Services, Inc. (2002b). Homepage.
Retrieved September 27, 2002, from
www.nls.org/index.html.
Neighborhood Legal Services, Inc. (2002c). PAAT Directory.
Retrieved September 27, 2002, from
www.nls.org/paatstat.htm.
Rehabilitation Engineering and Assistive Technology
Society of North America (RESNA). (2002a). Alternative Financing
Technical Assistance Project. Retrieved September 25, 2002, from
www.resna.org/AFTAP/index.html.
Rehabilitation Engineering and Assistive Technology
Society of North America (RESNA). (2002b). Technical Assistance
Project. Retrieved September 25, 2002, from www.resna.org/taproject/index.html.
Rehabtool.com. (2002). What's assistive technology?
Retrieved September 23, 2002, from
www.rehabtool.com/at.html.
Washington Assistive Technology Alliance. (2002).
Assistive technology. Retrieved September 23, 2002, from http://it.wce.wwu.edu/necc97/poster1/DoIt/WebWhacker/WW684.html.
Housing and Facilities Background
It is estimated that of the 26 percent of American
Indians and Alaska Natives living with a significant disability,
as many as 94,000 individuals have a mobility or self-care limitation
(Shuckahosee, 2000). In order to remain independent, many tribal
members with disabilities living on tribal lands require support
to make their homes, work environment, and other tribal facilities
accessible and their active participation in tribal life possible.
Though VR programs, with the cooperation of tribal governments,
often make a good-faith effort to modify work environments on an
as-needed basis so that they are suitable to individual needs, many
challenges remain.
Barriers to Service
Barriers to service include
- Building/modification costs
- Limited program funding
- Administrative backlog for grants and protocol
- Limited awareness of universal design feasibility
The baseline housing conditions on tribal lands and
limited funding for tribal housing programs may make meeting the
needs of tribal members with disabilities seem insurmountable. According
to a fact sheet prepared by the National American Indian Housing
Council in 2000, between 21 and 69 percent of homes are overcrowded
and have serious physical deficiencies compared with 5.9 percent
nationally (AIDTAC, 2001). In addition, there is a "113-year staff
backlog of title search requests at the Bureau of Indian Affairs
that impedes lending and stalls desperately needed housing initiatives"
(AIDTAC, 2001, p. 12).
The Basics of Universal Design
Universal design has also been called "life-span design,"
"inclusive design," and "trans-generational design." Its goal is
to develop guidelines for housing construction that would create
a livable, marketable environment for everyone regardless of ability,
age, or size (City of San Antonio, 2002). Following are the five
essential features of universal design that meet federal disability
legislation requirements and the needs of individuals with a variety
of physical disabilities (for further information on housing accommodations
needed by individuals who are deaf, hard of hearing, or blind or
have low vision, please see the Assistive Technology section of
the Toolkit):
1. Provide one no-step entrance with beveled threshold.
This may be at the front, side, or back of the house or garage
entrance.
2. Make doorways throughout the home at least 32
inches wide; hallways at least 36 inches clear width.
3. Reinforce walls around the toilet, bathtub, and
shower stall so that grab bars may be added later, if needed.
4. Install light switches and electrical controls
no higher than 48 inches and electrical plugs no lower than 15
inches above the floor.
5. Install lever handles on exterior and interior
doors and on sinks. (City of San Antonio, 2002, p. 1).
Figuring these features into builders' costs of new
construction, the City of San Antonio Planning Department arrives
at a total of $371 to $670 per house. Comparatively, later modification
for necessary access would result in a cost of between $3,350 and
$5,402 per house (City of San Antonio, 2002). While actual construction
costs will vary by locality, savings from the integration of universal
design at the time of construction versus later modification can
be expected.
Assessing Service Needs
The first step to building a strong framework for
services for people with disabilities is to know which services
are currently available and which are not. The eight questions that
follow were developed by the American Indian Disability Technical
Assistance Center (AIDTAC) in order to begin this local assessment
process.
1. What does your tribe or tribally designated housing
entity (TDHE) do to provide accessible housing for members with
disabilities?
2. Does your tribe or TDHE comply with Section 504
of the Rehabilitation Act?
3. Does your tribe or TDHE retrofit existing houses
when someone needs a bathroom modified or ramp built?
4. What is your tribe or TDHE doing to make sure
that people with disabilities have adequate accessible housing?
5. What cultural or traditional issues may be barriers
to providing accessible housing for people with disabilities?
6. What are the major barriers to making more homes
accessible on your reservation?
7. What resources does your tribe need in order
to overcome these barriers?
8. What guidelines do you suggest for improving
housing options for members with disabilities on your reservation?
(AIDTAC, 2001, pp. 12-13).
These questions can be used within a talking circle
or group format to bring together community members with diverse
perspectives and come to a full understanding of the spectrum of
needs within your specific community. From these shared experiences,
new understanding and wisdom may grow to move the process forward.
When the time comes to develop a plan of action, the
checklist developed by the City of San Antonio Department of Planning
may be a useful starting point. It identifies eight steps to an
"action plan outline for access compliance":
1. Become Knowledgeable:
Prepare a good-faith plan for immediate barrier removal.
2. Survey Existing Conditions:
Assemble a survey team including people with disabilities to assist
in identifying barriers and developing solutions. You will need
site and floor plans for making notes, and a tape measure.
3. Summarize the Results:
List all identified barriers and indicate the actual dimension/conditions
of each.
4. Consider Possible Solutions:
Brainstorm ideas for barrier removal and determine probable
costs for options. Decide which solutions best eliminate barriers
at a reasonable cost. Consider practical alternatives.
5. Prioritize Barrier Removal:
Priority One: Accessible entrances into the facility
and path of travel to reach those entrances
Priority Two: Access to goods and services
Priority Three: Access to restrooms
Priority Four: Any other measures necessary to provide
access
6. Remove All Barriers Identified
as "Readily Achievable": A "Checklist for Readily Achievable
Barrier Removal" is available through the City of San Antonio's
Disability Access Office for use in completing a survey of potential
architectural and communication barriers.
7. Put a Good-Faith Action Plan
in Place: It is critical to demonstrate a good-faith effort
that includes documentation of everything you have done and how
you plan to address future compliance requirements.
8. Utilize Dynamic Process for
Continuing Accessibility: Review your implementation plan
each year to reevaluate whether more improvements have become
readily achievable. (City of San Antonio, 2001)
Model Approaches
Partnerships between tribal programs working with
the tribal council are essential to meeting the housing and facility
accessibility needs of tribal members with disabilities. Partnerships
with community organizations can also help to meet needs where tribal
or federal funding comes up short. Even with limited resources,
it is possible to make headway in prioritizing and responding to
the needs of tribal members with disabilities. The experience of
the Oglala Lakota of the Pine Ridge Reservation is a case in point.
Pine Ridge "Quad Squad":
Pine Ridge is home to the 17,775-member Oglala Lakota Tribe. The
Pine Ridge Reservation includes seven counties with over 11,000
square miles and is situated in southwestern South Dakota on the
Nebraska state line, about 50 miles east of the Wyoming border (Mni
Sose, 2002). Jo White, director of the Pine Ridge "Quad Squad,"
which was formed in 1989, has continued the tradition of advocacy
for individuals with disabilities on the Pine Ridge Reservation
by coordinating services with the VR program and partnership activities
with the tribal housing authority.
Challenge: With unemployment
of nearly 84 percent (American Indian Relief Council, 2002), the
Pine Ridge Reservation is the poorest area of the United States
and faces significant economic challenges in achieving accessibility
in housing and facilities.
Resolution: Despite this
barrier, the tribal council, Oglala Sioux Tribal Housing Authority,
and other tribal support services for individuals with disabilities
led by the Quad Squad have worked together to increase accessibility
on the reservation, identify individual needs, and develop a plan
of response. Currently, the Housing Authority and the "Quad Squad"
are working together to construct sidewalks and crossing lights
to aid individuals who use wheelchairs or have another type of physical
mobility disability.
How it happened: The needs
of tribal members with disabilities are represented on the tribal
housing board by an ex-officio member who is also a consumer. This
board member is instrumental in ensuring that the needs of tribal
members with disabilities are prioritized in the five-year plan
and subsequent yearly block grant plans created under the authority
of the Native American Housing Assistance and Self-Determination
Act (NAHASDA). As a result, the Oglala have adopted the 5 percent
rule of ADA, ensuring that 5 percent of all houses built are accessible.
The Housing Authority maintains a waiting list of individuals with
disabilities with accessibility needs. Currently, only six individuals
are on this list, and for the first time, the Quad Squad has 10
ramps available for the immediate use of consumers; in the past,
individuals have had to wait as long as one or two years for one
to become available. Partnerships with other community organizations,
such as Native American Advocacy, and community church groups have
helped to build this success as well.
Tips from the field: Following
are some suggestions from the Quad Squad experience:
- Reach out to other organizations and tribal programs.
Help is available, but one must find opportunities and build on
them.
- Develop a voice in the tribal council and relevant
boards. In order to make the needs of individuals with disabilities
known, one needs a share of the voice of the tribal governance.
Making Plans a Reality
A number of organizations (Native and non-Native),
federal and state agencies, and publications can help in the development
of accessible housing and facility services for your community.
Five frequently asked questions have been identified regarding accessible
housing and facility services and the development of programs and
related issues. Find your question, or one that is similar, in the
list below.
Frequently Asked Questions
1. Whom do I contact first for help in making my
home or work place accessible?
2. What legislation impacts housing for tribal members
with disabilities, and how do I file a complaint if the laws are
not being honored?
3. Where do I learn more about universal design?
4. Whom can I contact for technical assistance,
training needs, networking opportunities, and information on housing?
5. What types of funding are available for tribal
housing programs looking to create accessible facilities for tribal
members, and how do I apply?
In the following pages, each question will be presented
in bold with a short response and a recommendation of resources
to contact for more information on the subject. Much of the contact
information presented here was compiled with the assistance of the
AIDTAC 2002 Resource Book (AIDTAC, 2002). If the information you
are looking for is not presented here, the Resource Book may provide
further insight into your question. AIDTAC can be reached toll free
at 1-866-4- AIDTAC or 1-866-424-3822, or via the Web at www.aidtac.org.
The Internet sites for the agencies listed in this section may also
prove useful in your own research.
Whom do I contact first for help in making my home
or work place accessible?
Start by contacting your tribal housing authority
and/or TDHE. The TDHE is the primary contact point for federal funds
for housing and construction according to NAHASDA. The TDHE is designated
by the tribe (and may double as the tribal housing authority or
take membership from this group) to develop a five-year plan of
action or overview of the direction the tribe will take in meeting
its low-income housing needs as well as a yearly plan detailing
the resources the tribe will use to meet these needs. The TDHE is
then given funds allocated to the tribe in the form of a block grant.
Each year approximately 540 tribes participate in this program for
a total of approximately $640 million. A formula determines the
actual amount allocated per tribe. The TDHE sets its own housing
and construction priorities. From building ramps to building ILCs
or for projects to modify existing buildings, the TDHE may use its
resources as it best sees fit according to the needs of its low-income
community (Jacobsen, 2002).
In many tribes, the Vocational Rehabilitation Office
partners with the tribal housing authority and the tribal council
to identify work place modification needs for tribal members with
disabilities who train for work with tribal employers or with employers
outside of tribal communities. As in the case of Pine Ridge, profiled
in the Assistive Technology section, Vocational Rehabilitation Offices
can serve as important advocates, assisting individuals with disabilities
in raising the awareness and prioritization of their housing and
accessibility needs. ILCs can also be an important source of information
regarding housing and accessibility issues (see Independent Living
section).
What legislation impacts housing for tribal members
with disabilities and how do I file a complaint if the laws are
not being honored?
The main legislation impacting housing for tribal
members with disabilities consists of six acts. Five acts relate
specifically to individuals with disabilities and provide for accessibility
in housing practices and procedures. The sixth reorganizes the U.S.
Department of Housing and Urban Development (HUD) programs designed
for Native American housing and provides another opportunity for
individuals with disabilities to have their housing needs met.
Rehabilitation Act, Section 504:
This piece of legislation prohibits discrimination on the basis
of disability and requires that new construction and newly altered
facilities built with federal funds be accessible. Each federal
agency providing funds is responsible for enforcing the Act, and
complaints must be directed to the federal agency with authorization
for the particular project in question (Makoa, 2002).
The Architectural Barriers Act:
This Act requires that buildings and facilities be accessible
if, since 1968, they were "designed, built, or altered with certain
federal funds, or if they are leased for occupancy by federal agencies"
(Makoa, 2002). Accessibility standards cover things such as walks,
ramps, curb ramps, entrances, elevators, and rest rooms. They are
described in the Uniform Federal Accessibility Standards. Complaints
may be filed with the Access Board (Makoa, 2002):
Office of Compliance and Enforcement
1331 F Street NW, Suite 1000
Washington, DC 20004-1111
Americans with Disabilities Act,
Title II: ADA prohibits discrimination on the basis of disability
in public accommodations in addition to its other charges (for a
full description of the impact of ADA on tribal governments, please
see the Federal Disability Law and Tribes section). ADA does not
require a link to federal funds for application as the previous
two acts do. The U.S. Department of Justice enforces Title III (Makoa,
2002).
Fair Housing Act: This law
prohibits discrimination on the basis of disability in the sale,
rental, or financing of housing. Also, it provides for certain architectural
accessibility requirements in new, multifamily housing. Complaints
may be filed with HUD (Makoa, 2002).
Native American Housing and Self-Determination
Act: NAHASDA reorganizes the relationship between tribal
governments and HUD, recognizing the right of self-governance of
American Indian tribes. As a result of this legislation, the block
grant programs were consolidated, and tribally designated housing
authorities in each eligible tribe are asked to make their own prioritization
regarding how these funds are to be used (Jacobsen, 2002). Title
VI of this Act authorizes a loan guarantee program designed to help
ensure better access to private capital markets for Indian tribes.
Where do I learn more about universal design?
The City of San Antonio is an example of best practices
in the area of community-oriented universal design. For those looking
to learn more about these strategies and for technical guidance,
the City of San Antonio is a great place to start. For a more technical
perspective, HUD offers assistance on its Web site. Information
can also be obtained by phone through HUD. Finally, the Uniform
Federal Accessibility Standards provide the exact federal guidelines
for accessibility.
Center for Universal Design
College of Design
North Carolina State University
50 Pullen Road, Brooks Hall, Room 104
Campus Box 8613
Raleigh, NC 27695-8613
Phone: (800) 647-6777; (919) 515-3082
Fax: (919) 515-7330
E-mail: cud@ncsu.edu
The Center for Universal Design is a national research,
information, and technical assistance center that evaluates, develops,
and promotes universal design in housing, public and commercial
facilities, and related products.
U.S. Architectural and Transportation Barriers Compliance
Board
(Access Board)
Office of Technical and Information Services
1331 F Street NW, Suite 1000
Washington, DC 20004-1111
Documents
Phone: (800) 872-2253
TTY/TDD: (800) 993-2822
Electronic Bulletin Board Service: (202) 272-5448
This federal agency developed the ADA Accessibility
Guidelines (ADAAG), which were adopted by the Department of Justice
(DOJ) and the Department of Transportation (DOT) as enforceable
standards and called the ADA Standards for Accessible Design. The
Access Board provides technical assistance on the ADAAG regarding
design and the removal of architectural, transportation, communication,
and attitudinal barriers that affect persons with physical disabilities.
Whom can I contact for technical assistance, training
needs, networking opportunities, and research information on housing?
Native American Indian Housing Council (NAIHC)
900 2nd Street NE, Suite 305
Washington, DC 20002
Phone: (202) 789-1754; (800) 284-9165
Fax: (202) 789-1758
Web site: http://naihc.indian.com/index.html
NAIHC is a national membership organization that promotes,
supports, and upholds tribal housing agencies in their efforts to
provide culturally relevant, decent, safe, sanitary, and affordable
housing for Native people in American Indian communities and Alaska
Native villages.
Center for Housing and New Community Economics (CHANCE)
Institute on Disability/UCE
University of New Hampshire
7 Leavitt Lane, Suite 101
Durham, NH 03824-3522
E-mail: drv@cisunix.unh.edu
CHANCE was established in March 2001. CHANCE's mission
is to improve and increase access to integrated, affordable, and
accessible housing coordinated with, but separate from, personal
assistance and supportive services. CHANCE's purpose will be to
offer alternatives to approaches that segregate, congregate, and
control people with disabilities. The IOD will work in partnership
with American Disabled for Attendant Programs (ADAPT) in all aspects
of the Center. ADAPT is a national organization that focuses on
promoting services in the community for people with disabilities.
The Consortium for Citizens with Disabilities (CCD)
1730 K Street NW, Suite 1212
Washington, DC 20006
Phone: (202) 785-3388
Fax: (202) 467-4179
E-mail: Info@c-c-d.org
CCD is a coalition of national consumer, advocacy,
provider, and professional organizations headquartered in Washington,
D.C. Since 1973, the CCD has advocated on behalf of people of all
ages with physical and mental disabilities and their families. CCD
does this by
- Identifying and researching public policy issues,
developing testimony and policy recommendations, and encouraging
innovative solutions to public policy concerns.
- Educating members of Congress in an effort to
improve public policies and programs that foster independence,
productivity, integration, and inclusion of people with disabilities.
- Encouraging people with disabilities and their
families to advocate for themselves and coordinating grassroots
efforts to support these advocacy efforts.
CCD has worked to achieve federal legislation and
regulations that ensure that the 54 million children and adults
with disabilities are fully integrated into mainstream society.
Fannie Mae Homepath Services
Phone: (800) 7FANNIE; (800) 732-6643
Web site: www.homepath.com/cgi-bin/WebObjects-4/HomePathWOF
Fannie Mae is the largest source of home mortgage
funds in the United States. Homepath.com is a Web site designed
to help consumers find mortgage information. A Fannie Mae Foundation
publication promotes economic understanding and personal financial
literacy among Native people and teaches Native Americans financial
skills that help them make informed financial decisions for themselves,
their families, and their communities.
Housing Assistance Council (HAC)
National Office
1025 Vermont Avenue NW, Suite 606
Washington, DC 20005
Phone: (202) 842-8600
Fax: (202) 347-3441
E-mail: hac@ruralhome.org
Since 1971, this national nonprofit organization has
worked to improve the availability of decent, affordable housing
in rural areas of the United States by helping local organizations
build affordable single- and multifamily homes for low-income people.
HAC emphasizes local solutions, empowering the poor, reducing dependence,
and using self-help strategies such as "sweat equity" construction.
Special focus is on high-need groups and regions: Indian country,
the Mississippi Delta, farmworkers, the Southwest border colonias,
and Appalachia. If you have a general question or are not sure which
office to contact, please contact the National Office at hac@ruralhome.org
and HAC staff will determine who is best able to respond to you.
National Association of Home Builders (NAHB)
Research Center
400 Prince George's Boulevard
Upper Marlboro, MD 20774
Phone: (301) 249-4000; (800) 638-8556
Accessibility Concerns: (301) 430-6213; (301) 430-6234
Fax: (301) 430-6180
NAHB publishes Residential Remodeling and Universal
Design: Making Homes More Comfortable and Accessible and houses
the National Center for Seniors' Housing Research.
National Low Income Housing Coalition (NLIHC)
1012 14th Street NW, Suite 610
Washington, DC 20005
Phone: (202) 662-1530
Fax: (202) 393-1973
E-mail: info@nlihc.org
Web site: www.nlihc.org/
Established in 1974, NLIHC is dedicated solely to
ending America's affordable housing crisis. NLIHC educates, organizes,
and advocates, ensuring decent, affordable housing within healthy
neighborhoods for everyone. NLIHC provides up-to-date information,
formulates policy, and educates the public on housing needs and
the strategies for solutions.
Neighborhood Reinvestment Training
Institute
1325 G Street NW, Suite 800
Washington, DC 20005
Phone: (202) 220-2454; (800) 438-5547
Fax: (202) 376-2168
E-mail: nrti@nw.org
The Neighborhood Reinvestment Training Institute is
dedicated to providing the highest quality training to the staff
and boards of organizations committed to improving the affordability
of neighborhood housing, the vitality of neighborhood economies,
and the quality of community life.
Rural Housing Service National Office
U.S. Department of Agriculture
Room 5037, South Building
14th Street and Independence Avenue SW
Washington, DC 20250
Phone: (202) 720-4323
Web site: www.rurdev.usda.gov/rhs/Feedback/feedback.htm
The U.S. Department of Agriculture (USDA) promotes
rural development programs including housing assistance programs.
The USDA supports programs in three main areas: community facilities,
single-family housing, and multifamily housing. The Web site will
direct you to the appropriate state agency for grant or program
applications and information.
What types of funding are available for tribal housing
programs looking to create accessible facilities for tribal members,
and how do I apply?
As Jo White, founding member of the Quad Squad in
Pine Ridge, South Dakota, knows well, "there is a lot of great stuff
to help you live independently, but it costs money; and getting
money takes a lot of time" (White, 2002). Though Ms. White was speaking
about assistive technology, the same can be said for housing and
facility accessibility services. The following two agencies are
where the funding hunt begins. However, innovation, openness to
partnerships, and creative collaboration will lead to other sources
that will help to meet the needs of not only low-income tribal members,
but those struggling to make ends meet as well. The list of agencies
and contacts described in the previous section may also be used
to seek funding sources and programs.
U.S. Department of Housing and Urban Development
HUD Office of Public and Indian Housing;
HUD Office of Native American Programs
451 7th Street SW
Washington, DC 20410
Phone: (202) 708-1112
Fax: (202) 708-1455
Web site: www.hud.gov/groups/nativeamericans.cfm
HUD offers programs, assistance, and loan programs
specifically for Native American tribes, organizations, and, sometimes,
individuals. HUD offers information on basic homebuying, fair housing,
and housing counseling. The HUD Office of Native American Programs
offers grant assistance through four main programs; two are focused
on tribal communities and two are focused on individuals. The Codetalk
Web site administered by HUD is also an excellent resource for program
information.
Bureau of Indian Affairs
Office of Public Affairs
1849 C Street, NW - MS-4542-MIB
Washington, DC 20240-0001
Phone: (202) 208-3711
Fax: (202) 501-1516
Web site: www.doi.gov
BIA's mission is to enhance the quality of life, to
promote economic opportunity, and to protect and improve the trust
assets of American Indians, Indian tribes, and Alaska Natives. BIA
seeks to accomplish this by delivering quality services and maintaining
government-to-government relationships within the spirit of Indian
self-determination. The Bureau has limited funds available for road
maintenance and low-income housing improvement programs. According
to Bureau staff, the agency receives as many as 5,800 applicants
for their low-income housing improvement grants. With a budget of
$23 million per year, BIA is able to fill only approximately 500
requests; the waiting list is extensive (Hinkel, 2002). Currently,
access to the Department of the Interior Web site is restricted
in compliance with a court order.
References
American Indian Disability Technical Assistance Center
(AIDTAC). (2002). AIDTAC Resource Book. Missoula: The University
of Montana, Rural Institute on Disabilities.
American Indian Disability Technical Assistance Center
(AIDTAC). (2001). A Short Guide to Developing Disability Infrastructure
on Reservations. Missoula: The University of Montana, Rural Institute
on Disabilities.
American Indian Relief Council (AIRC). (2002). Pine
Ridge Reservation. Retrieved October 8, 2002, from
www.airc.org/reservations/pineridge.html.
City of San Antonio Planning Department, Disability
Access Office and Enterprise Foundation. (2001). Universal design
2001.
City of San Antonio Planning Department, Disability
Access Office and Enterprise Foundation. Universal design. Flyer.
Hinkel, June. Bureau of Indian Affairs. (September
17, 2002). Telephone interview by Ara Walline.
Jacobsen, Donna, U.S. Department of Housing and Urban
Development. (October 4, 2002). Telephone interview by Ara Walline.
Makoa. (2002). The Architectural Barriers Act and
Other Access Laws. Retrieved October 4, 2002, from
www.makoa.org/gov/g15.htm.
Mni Sose Intertribal Water Rights Coalition. (2002).
Oglala Sioux Tribe Community Environmental Profile. Retrieved October
8, 2002, from www.mnisose.org/profiles/oglala.htm.
Shuckahosee, Robert, AIDTAC Rural Institute on Disabilities.
(2000). Disability issues and Indian housing: Section 504 is a right!
Missoula: University of Montana.
South Dakota Resource Directory. Retrieved October
23, 2002, from
www.state.sd.us/dhs/drs/ADA/resourcedir/stateada.htm
U.S. Department of Justice. (2001). A Guide to Disability
Rights.
White, Jo. (September 9, 2002). Telephone interview
by Martina Whelshula.
Transportation Background
The spectrum of transportation needs and barriers
in Indian country is as diverse as the land itself. Among the 550
federally recognized tribes, the size, climate, and infrastructure
of tribal lands vary, from the urban-centered Oneida Nation in Green
Bay, Wisconsin, to the rural-based Cook-Inlet Tribe in the greater
Anchorage area of Alaska. Correspondingly, services range from the
dedicated community health representatives who provide primary transportation
services for the Yakama Nation in Washington State to the dispatch-operated
fleet of fully accessible vans operated by the Pueblo of the Zuni
in Northwest New Mexico. In 1995, only 19 tribes had transportation
programs funded by the Federal Transit Administration's Section
18 Federal Transit Grant for Non-Urban Areas (Community Transportation
Association of America, 2002). Transportation resources and needs
remain out of sync in many areas today.
Though each tribe is challenged to assess its own
needs, match those to the services currently provided, and determine
where the gaps in services lie, there are some common struggles
among individuals with disabilities across the nation. Transportation
for tribal members with disabilities living on tribal lands is complicated
by the high cost and in some cases physical impossibility of owning,
adapting, insuring, and maintaining vehicles for personal use. Without
a reliable tribal public transportation system to rely on, these
individuals must rely on friends and family to meet their health,
medical, employment, social, and household needs, or go without.
An individual's level of independence is thus often determined to
a greater extent by community resources, or lack of them, than by
his/her own physical capabilities.
Barriers to Service
- Remoteness and isolation
(distance to services)
- Limited public transportation services
- Lack of accessibility
(i.e., roads, providers, accommodations)
- Economic hardship in private transportation
ownership (no money for car, insurance,
maintenance, other transportation)
- Driver's license (limited
drivers, suspension, inaccessibility)
- Limited public transportation operation hours
and service area (no evening or weekend
transportation)
This section will provide tools for assessing your
own tribal program, describe strategies that other tribes and service
providers have used to overcome the barriers in their communities,
and present resources and advocates that are available to assist
in the development and implementation of your own action plan to
improve transportation and access for people with disabilities in
your community.
Assessing Service Needs
The first step to building a strong framework for
services for people with disabilities is to know which services
are currently available and which are not. The seven questions that
follow were developed by AIDTAC in order to begin this assessment
process. It is suggested that they be used within a talking circle
or group format to bring together community members with diverse
perspectives and to come to a full understanding of the spectrum
of needs within your specific community. From these shared experiences,
new understanding and wisdom may grow to move the process forward.
1. What transportation services are available on
your reservation?
2. Are people with disabilities able to use these
transportation services?
3. What is your tribe doing to make sure that people
with disabilities have adequate transportation?
4. What are the cultural or traditional issues that
should be addressed as barriers to transportation for people with
disabilities?
5. What are the major barriers to making transportation
on your reservation accessible to people with disabilities?
6. What resources does your tribe need in order
to overcome these barriers?
7. What guidelines do you suggest for removing transportation
barriers on your reservation? (AIDTAC, 2001, pp. 10-11)
Definitions
The following brief list of definitions developed
by the National Transit Resource Center will assist you in navigating
the resource information currently available as you look to grow
and develop your existing transportation framework (Community Transportation
Association of America, 2002). In this section, you will find descriptions
of the variety of service structures currently used to meet the
needs of individuals with disabilities. For a more complete glossary,
the Web site of the National Transit Resource Center, Community
Transportation Association of America, provides a good starting
point (www.ctaa.org/ntrc/glossary.asp).
Accessibility: The extent
to which facilities, including transit vehicles, are barrier-free
and can be used by people who have disabilities, including wheelchair
users.
Coordination: A cooperative
arrangement between transportation providers and organizations needing
transportation services. Coordination models can range in scope
from shared use of facilities, training, or maintenance to integrated
brokerages or consolidated transportation service providers.
Curb-to-Curb Service: A common
designation for paratransit services. The transit vehicle picks
up and discharges passengers at the curb or driveway in front of
their home or destination. In curb-to-curb service the driver does
not assist the passenger along walks or steps to the door of the
home or other destination.
Demand-Response Service:
The type of transit service where individual passengers can request
transportation from a specific location to another specific location
at a certain time (also called "dial-a-ride"). Transit vehicles
providing demand-response service do not follow a fixed route but
travel throughout the community transporting passengers according
to their specific requests. These services usually, but not always,
require advance reservations.
Deviated Fixed Route: This type of transit is a hybrid
of fixed-route and demand-response services. A bus or van passes
along fixed stops and keeps to a timetable; however, the bus or
van can deviate from its course between two stops to go to a specific
location for a prescheduled request. Often used to provide accessibility
to persons with disabilities.
Door-to-Door Services: A
form of paratransit service that includes passenger assistance between
the vehicle and the door of his or her home or other destination.
A higher level of service than curb-to-curb, yet not as specialized
as "door-through-door" service (where the driver actually provides
assistance within the origin or destination).
Fixed Route: Transit services
where vehicles run on regular, predesignated, prescheduled routes,
with no deviation. Typically, fixed-route service is characterized
by printed schedules or timetables, designated bus stops where passengers
board and exit, and the use of larger transit vehicles.
Guaranteed Ride Home: Program
that encourages employees to carpool, use transit, bike, or walk
to work by guaranteeing them a ride home in case they cannot take
the same mode home (e.g., if they need to work late or if an emergency
occurs).
Medicaid: Also known as Medical
Assistance, this is a health care program for low-income and other
"medically needy" persons. It is jointly funded by state and federal
governments. The Medicaid program pays for transportation to nonemergency
medical appointments if the recipient has no other means to travel
to the appointment.
Paratransit: Types of passenger
transportation that are more flexible than conventional fixed-route
transit but more structured than the use of private automobiles.
Paratransit includes demand-response transportation services, subscription
bus services, shared-ride taxis, car-pooling and vanpooling, and
so on. Most often refers to wheelchair-accessible, demand-response
van service.
Rideshare Program: A rideshare
program facilitates the formation of carpools and vanpools, usually
for work trips. A database is maintained for the ride times, origins,
destinations, and driver/rider preferences of users and potential
users. Those requesting to join an existing pool or looking for
riders are matched by program staff with other appropriate persons.
In rural areas, a rideshare program is often used to coordinate
Medicaid or volunteer transportation.
Service Route: Another hybrid
between fixed-route and demand-response service. Service routes
are established between targeted neighborhoods and service areas
that riders want to reach. Similar to deviated fixed routes, service
routes are characterized by flexibility and deviation from fixed-route
intervals. However, while deviated fixed routes require advance
reservations, service routes do not. A service route can include
both regular, predetermined bus stops and/or allow riders to hail
the vehicle and request a drop-off anywhere along the route.
Technical Assistance: Nonfinancial
support to help accomplish program goals, such as training, consulting,
research, or evaluation.
User-Side Subsidy: A transportation
funding structure in which qualified users (usually economically
disadvantaged persons) are able to purchase vouchers for transportation
services at a portion of their worth. The users then may use the
vouchers to purchase transportation from any participating provider.
The vouchers are redeemed by the provider at full value and the
provider is reimbursed by the funding agency for the full value.
Vanpool: A prearranged ridesharing
service in which a number of people travel together on a regular
basis in a van. Vanpools may be publicly operated, employer operated,
individually owned, or leased.
Model Approaches
Recognizing that a weak transportation infrastructure
may limit economic opportunities and pose a substantial barrier
to accessing essential health and social services for individuals
with disabilities as well as other tribal members, several tribes
have developed model transportation systems. In developing these
systems, tribes have tapped funding opportunities from a variety
of state and federal sources. The end result has been transportation
systems that are fully accessible to people with disabilities and
that link these individuals to employment centers and health and
human services programs.
Pueblo of the Zuni
The Pueblo of the Zuni is the largest of 19 pueblos
in northwest New Mexico. It serves a population of 11,000 people
and covers 1,000 square miles. Twelve years ago, Program Director
Larry Alflen recognized transportation as one of the community's
biggest barriers to service provision (Alflen, 2002). The profile
that follows describes the work that has been completed so far.
Challenge: Situated 40 miles
north of Gallup and 150 miles west of Albuquerque, the pueblo's
remoteness and isolation caused considerable difficulty for tribal
members to access services, particularly those tribal members with
disabilities.
Resolution: Today, the Pueblo
of the Zuni provides approximately 33,000 trips a year around the
community, and up to 200 trips per day. The transportation program
operates several 15-passenger vans (some with wheelchair lifts),
is accessible to all tribal members, including those with disabilities,
and is demand responsive (a dispatcher coordinates transportation
requests). It also utilizes peer drivers to meet the needs of the
community. In addition, several drivers and their dispatcher are
graduates of the VR program.
How it happened: The program
is funded through a number of grants: Sections 5311 and 5310 of
the Transportation Act, otherwise known as the Small Urban and Rural
Transportation Grant and the Capital Program for Elderly and Disabled
Transportation; demonstration projects sponsored by the Association
of Programs for Rural Independent Living (APRIL); a State of New
Mexico vocational rehabilitation transportation grant; and endorsement
by Medicaid for transportation reimbursement for services provided
to individuals with disabilities. Most of these grants require reapplication
every year. Developing strong relationships with agency grants administrators
is key to understanding how to develop and sustain competitive proposals.
Tips from the field:
- Look at a variety of different opportunities to
meet as many needs as possible.
- Develop strong relationships with agency grants
administrators in order to understand how to develop competitive
proposals.
- Explore overlaps in service needs and program
opportunities.
Confederated Salish and Kootenai Tribes
The Flathead Reservation, home of the Confederated
Salish and Kootenai Tribes, spans 1.5 million acres in seven communities.
VR Program Director Arlene Templer has been working with program
staff to develop transportation resources to connect tribal members
to employment opportunities (Templer, 2002). The following profile,
which is based on a telephone interview, depicts a program that
continues to evolve.
Challenge: Remoteness and
isolation are the primary barriers for this community as well. Many
tribal members are as far as an hour away from the tribal complex
and tribal health and human service offices where the majority of
services are provided.
Resolution: Transportation
needs were integrated into VR, elderly, and independent living grant
proposals. In this way the resolution to the barrier became part
of the process of strengthening existing services. The program uses
a number of approaches and still recognizes that challenges remain
in the implementation of the program even after it is developed
and operational. The program uses a voucher system but sees that
as a limited option because there are not many service providers.
This limitation has led the program director to seek a more long-term
resolution. Using accessible buses, vans, and cars, the program
is developing a combination fixed-route dispatch service in collaboration
with the Salish Kootenai College.
How it happened: The
Confederated Salish and Kootenai Tribes responded to their transportation
need by integrating services and seeking technical assistance through
their extensive network of partnering agencies. By taking a two-pronged
approach, they can offer temporary transportation services to supplement
their VR, elderly services, and services for individuals with a
disability while working to develop a more comprehensive service
that is tailored to their community's specific need.
Tips from the field:
- Network with service providers, agencies offering
grants, and technical assistance organizations in order to understand
the service options available to your community.
- Consider integrating transportation services with
the programs that transportation supports (e.g., vocational rehabilitation
and job employment, education programs, elderly services, and
disability services).
Other Programs
Several other tribes have developed strong transportation
programs in their community. Among these are the Navajo Transit
System in Arizona, the Choctaw Nation in Mississippi, the Chicksaw
Nation Transportation System in Oklahoma, and the Shoshone and Arapaho
Nation Transit System in Wyoming. Each of these programs operates
fully accessible paratransit vans or vehicles that are ADA compliant.
While empirical evidence has not been gathered regarding consumer
satisfaction with these services, it is reasonable to believe that
these systems have added another degree of independence for individuals
with disabilities in these communities as they are more readily
connected to employment and health and human services programs (Langwell
and Sutton, 2002).
Making Plans a Reality
A number of organizations (Native and non-Native),
federal and state agencies, and publications are available to help
in the development of transportation services for your community.
Six frequently asked questions have been identified regarding transportation
services, the development of programs, and related issues. Find
your question, or one that is similar, in the list below.
Frequently Asked Questions
1. How do you find out about transportation services
in your area?
2. What do you do if there are no transportation
services in your area?
3. How do you assess the transportation needs and
develop a service network in your community?
4. How do you find funding to support transportation
services and programs?
5. Who provides assistance with compliance?
6. What legislation on the horizon could impact
transportation service funding? How do you keep informed about
the impact of pending legislation on transportation in tribal
communities?
In the following pages, each question will be presented
in bold with a short response and a recommendation of resources
to contact for more information on the subject. Much of the contact
information presented here was compiled with the assistance of the
AIDTAC 2002 Resource Book. If the information you are looking for
is not presented here, the AIDTAC Resource Book may provide further
insight into your question. AIDTAC can be reached toll free at 1-866-4-AIDTAC
(1-866-424-3822), or on the Web at www.aidtac.org.
The Internet sites for the agencies listed in this section may also
prove useful in your own research.
1. How do you find out about transportation services
in your area?
Begin by contacting your tribe. Transportation programs
are most often affiliated with health care services or VR and employment
services.
When greater distances are involved, a national database
can assist you in locating and scheduling transportation and accommodation,
whether it be air or ground transportation that you require. The
information following provides a more extensive description of this
service.
Project ACTION Accessible Traveler's Database
Phone: (202) 347-3066; (800) 659-6428
TTY/TDD: (202) 347-7385
Web site: www.projectaction.org/paWeb/index.htm
This database provides information about availability
of local public transit systems (including private shuttle and taxi
services) that are paratransit compatible. The database organizes
service information by state and city, aiding travelers in planning
and scheduling transportation at unfamiliar destinations as well
as assisting individuals with disabilities in identifying existing
services within their own communities. More specifically, the database
includes seven types of service providers:
- Public urban and rural transit operators
- Accessible van rental companies
- Private bus/tour companies with accessible vehicles
- Accessible taxis
- Airport transportation
- Hotel-motel shuttles
- National 800 numbers (domestic airlines, Greyhound
Intercity Services, Amtrak, companies with accessible car rental,
and major hotel chains)
Each entry contains contact information for the service
provider as well as hours of operation, paratransit fare, eligibility,
service route, and advance reservation requirements. If you do not
have access to the Internet, you may contact Easter Seals Project
ACTION directly for assistance.
2. What do you do if there are no transportation
services in your area?
If your community has not developed a transportation
assistance program that is accessible to you or a family member
with a disability, it does not mean that you or your friend or family
member is alone in this need. Contacting your tribal health, education,
or VR program will still be a good starting point. Using the tips
in the Advocating Change section of this Toolkit and the resources
of your tribe's program staff, identify and meet with other members
of the community who may have similar transportation concerns.
This grassroots approach was incredibly successful
for members of the Hopi Nation in Arizona. The early intervention
program, special activity day, and newly formed VR program all grew
out of the passionate commitment of a core group of parents and
community members who identified a service need, educated themselves
about the topic, formed a plan, and worked for change.
3. How do you assess the transportation needs and
develop a service network in your community?
For help in assessing the service needs of your community
and developing a program suited to those needs, a variety of organizations
are available to guide you through the process. The following groups
can direct you to resources, inform you about meetings and conferences
on the topics you are interested in, and designate a technical liaison
to work with you one-on-one in answering your questions. Groups
specializing in independent living services, such as APRIL, may
also provide assistance on transportation development (see Independent
Living section).
American Indian Disability Technical Assistance Center
(AIDTAC)
The University of Montana Rural Institute: Center
of Excellence in Disability Education, Research and Services
52 Corbin Hall
Missoula, MT 59812-7056
Phone: (866) 4-AIDTAC; (866) 424-3822
Fax: (406) 243-2349
Web site: www.aidtac.org
AIDTAC is a Native American organization whose mission
is to provide information and technical assistance to AI/AN tribes
as they build their capacity to develop and implement culturally
appropriate laws and policies, cross-cutting infrastructure, and
direct program services for tribal members with disabilities. AIDTAC
provides excellent information about funding opportunities, training
seminars and workshops, and Internet research links. Eight staff
members and five subcontractors are currently employed by the organization
to provide assistance to consumers.
The National Transit Resource Center
Community Transportation Association of America (CTAA)
1341 G Street NW, 10th Floor
Washington, DC 20005
Phone: (202) 628-1480
Fax: (202) 737-9197
Web site: www.ctaa.org/ntrc/is_nativeamerican.asp
Contact: Chris Zeilinger; Phone: (202) 661-0217
The Resource Center recognizes the transportation
needs and barriers in Indian country and offers specific resources
for tribal governments and programs in addition to meeting its larger
charge to support public and community transportation efforts serving
community planners, transit providers, and on-the-move citizens
with instructional briefs, studies, and reports, collected data,
legislative facts, professional peer support, advice, and mobility
assistance. In addition to the USDA program described below, the
CTAA also works with the Labor and Transit Administrations to provide
service support. Every January, it updates and publishes a joint
funding and resource guide for tribal programs. Its publications
include "Transportation in Indian Country: Getting Started," with
worksheet guides to assist program developers; "American Indian
Transportation: Issues and Successful Models," with extensive program
and funding information; and "Welfare Reform in Indian Country:
Current Trends and Future Directions."
USDA Tribal Passenger Technical Assistance Program
National Transit Resource Center
Community Transportation Association of America
Phone: (202) 628-1480, ext. 119
Fax: (202) 737-9197
Web site: www.ctaa.org/ntrc/usda/projects/tpttap_brochure.asp
This program is designed to help tribal communities
enhance economic growth and development by improving transportation
services. It provides planning assistance for facility development,
transit service improvements and expansion, new system start-up,
policy and procedure development, marketing, transportation coordination,
training, and public transit problem-solving activities. Federally
recognized tribes are eligible to receive assistance. Tribes must
complete and submit an application to CTAA for review, scoring,
and ranking. Projects are initiated according to this approval process.
Easter Seals Project ACTION
(Accessible Community Transportation in Our Nation)
700 13th Street NW, Suite 200
Washington, DC 20005
Phone: (202) 347-3066; (800) 659-6428
TTY/TDD: (202) 347-7385
Fax: (202) 737-7914
E-mail: project_action@opa.easter-seals.org
Web site: www.projectaction.org/
Funded through a cooperative agreement with the U.S.
Department of Transportation and the Federal Transportation Administration,
Easter Seals Project ACTION (ESPA) promotes cooperation between
the transportation industry and the disability community to increase
mobility for people with disabilities under ADA and beyond. Project
ACTION offers various resources, as well as training and technical
assistance, in an effort to make ADA work for everyone, every day.
Congressionally mandated priority areas include transportation needs
assessment of people with disabilities in local communities; outreach
and marketing strategies, training for transit providers and consumers
with disabilities, and technology to eliminate barriers to transportation
accessibility.
ESPA has created a solid outlet for information dissemination
through the development of a resource center, clearinghouse, an
800 number, and Web site and participation in technical assistance
conferences. All training curricula, manuals, models, and videotapes
are available at no cost. Funding has been mandated for this project
through 2003 under the Transportation Equity Act for the Twenty-first
Century.
Transportation Research Board (TRB)
2001 Wisconsin Avenue NW, Green Building
Washington, DC 20007
Phone: (202) 334-2934
Fax: (202) 334-2003
Web site: http://trb.org/
The TRB is a unit of the National Research Council,
a private, nonprofit institution whose mission is to promote innovation
and progress in transportation by stimulating and conducting research,
facilitating the dissemination of information, and encouraging the
implementation of research results. Cooperative research programs
fund research projects that seek to answer transportation problems
solicited by community programs-research ideas can be directed to
this agency for consideration. The TRB is funding an ongoing research
project entitled "Increasing Native American Participation in Programs
and Services of the Federal Transit Administration." The TRB also
hosts an annual conference on transportation issues that attracts
as many as 8,000 professionals from throughout the United States
and abroad.
U.S. Department of Transportation (DOT)
400 7th Street SW
Washington, DC 20590
Phone: (202) 366-4000
Web site: www.dot.gov
DOT oversees the formation of national transportation
policy and promotes intermodal transportation. It administers the
budget authority for a number of grant programs accessible to AI/AN
tribes. Several agencies under this authority such as the Federal
Highway Administration also have Native American liaisons that work
directly with tribes. Resources such as the toll-free Hotline to
Assist Air Travelers with Disabilities (operated between the hours
of 7 AM and 11 PM EST daily at 1-800-778-4838 or TTY 1-800-455-9880)
have been implemented to fulfill the responsibility of DOT under
ADA and other applicable legislation.
National Rural Transit Assistance Program (RTAP)
Federal Transit Administration
TransNet Program
Phone: (800) 527-8279
Current information on American Indian transportation
issues and practices and how you can replicate them in your community
is available via the TransNet service at the hotline above. This
service will match you to a networker whose particular experience
will be relevant (Shawn, 2002, p. 9).
In addition to this service, each state operates a
rural transit assistance program to provide training, technical
assistance, and resource information to transportation providers.
The National Transit hotline may be accessed at 1-800-527-8279.
It can provide you with a variety of information: answers to simple
or complex questions, how to solve a transit problem, written materials,
and referrals to peers with expertise in the start-up and operation
of tribal transportation services (Shawn, 2002).
4. How do you find funding to support transportation
services and programs?
According to the issue brief developed by the World
Institute on Disability and excerpted by APRIL, in 1999, only 5
percent of transportation dollars were allocated to serve the 27
percent of the population living in rural America (including those
living on tribal lands), a disproportionate number of which are
disabled (Gonzales, Seekins, and Kasnitz, 1999). Clearly, identifying
funding sources and completing a competitive application are challenges
for many new and developing transportation systems in rural locations.
Tribal programs are no exception.
Tribes with successful transportation programs, like
those profiled above, develop a budget through a combination of
funding sources: grants from multiple agencies and organizations,
tribal revenue, and creative collaborations. Funds can be made available
to transportation programs through federal and state agencies or
as a result of legislative authority. The legislation authorizing
transportation for individuals with disabilities as well as the
primary agencies providing funds to programs is described below.
These descriptions can serve as leads for you to follow up with
and identify funding sources specific to your unique program needs.
Laws Addressing Transportation Rights of Individuals
with Disabilities
Many of these descriptions are based on the references
provided by the NTRC Web site Glossary. Please visit www.ctaa.org/ntrc/glossary.asp
for more information.
Americans with Disabilities Act
(ADA): Passed by Congress in 1990, this Act mandates equal
opportunities for persons with disabilities in the areas of employment,
transportation, communications, and public accommodations. Under
this Act, most transportation providers are obliged to purchase
lift-equipped vehicles for their fixed-route services and must ensure
system-wide accessibility of their demand-responsive services to
persons with disabilities. Public transit providers also must supplement
their fixed-route services with paratransit services for those persons
unable to use fixed-route service because of their disability.
Transportation Act: Section
5310: The section of the Federal Transit Act that authorizes capital
assistance to states for transportation programs that serve the
elderly and people with disabilities. States distribute Section
5310 funds to local operators, in both rural and urban settings,
who are either nonprofit organizations or the lead agencies in coordinated
transportation programs.
Section 5311: The section
of the Federal Transit Act that authorizes capital and operating
assistance grants to public transit systems in areas with populations
of less than 50,000.
Workforce Investment Act:
This 1998 legislation consolidates the former Job Training Partnership
Act and many other federal job training programs into state-managed
block grants. This law also replaces Private Industry Councils with
Workforce Investment Boards. The Act authorizes the provision of
supportive services (e.g., transportation) to assist participants
receiving the other services and the provision of temporary income
support to enable participants to remain in training.
Older Americans Act: First
passed in 1965, this federal law established a network of services
and programs for older people. This network provides supportive
services, including transportation and nutrition services and works
with public and private agencies that serve the needs of older individuals.
Transportation Equity Act for the
Twenty-first Century (TEA-21): This 1998 legislation authorizes
approximately $217 billion for highways, highway safety, and mass
transportation until fiscal year 2003.
Intermodal Surface Transportation
Efficiency Act of 1991 (ISTEA): Administered by the Federal
Transit Administration, this Act is the principal source of federal
financial assistance for public transportation. Additional DOT funds
may be available through ISTEA's flexible funding provisions, which
allow states to transfer federal highway funds to transit programs
for capital projects. Many states have found ISTEA to be a valuable
mechanism for acquiring additional vehicles and facilities for their
rural transit activities, including some American Indian transit
programs (Shawn, 2002).
Social Security Act, Title XIX:
This section of the Social Security Act describes, among others,
the eligibility determination and transportation services offered
by Medicaid programs for individuals with disabilities and elderly
individuals with low income (see Centers for Medicare & Medicaid
Services contact information on following page).
Funding Sources for Programs
Federal Transit Administration (FTA)
400 7th Street SW
Washington, DC 20590
Phone: (202) 366-4043
Fax: (202) 366-3472
Web site: www.fta.dot.gov/office/regional/
A component of the U.S. Department of Transportation
that regulates and helps fund public transportation, FTA provides
financial assistance for capital and operating costs and also sponsors
research, training, technical assistance, and demonstration programs.
FTA was created by the passage of the Urban Mass Transportation
Act of 1964. In addition to the national office referenced above,
10 regional offices and 5 metro offices provide contact points.
Administration on Aging
330 Independence Avenue SW
Washington, DC 20201
Phone: (800) 677-1116 (Eldercare Locator: finds elder services in
locality); (202) 619-7501 (National Aging Info Center: technical
info and public inquiries); (202) 401-4541 (Office of Assistant
Secretary for Aging: congressional and media inquiries)
Fax: (202) 260-1012
Web site: www.AOA.dhhs.gov
The Administration on Aging agency within the U.S.
Department of Health and Human Services oversees the implementation
of the Older Americans Act, which provides funds to meet the needs
of American Indian elders. Services provided under Title VI include
nutrition, information, and referral and transportation services.
The Area Agency on Aging is the local entity that plans senior services
and advocates for the elderly within their communities, administering
provisions of the Older Americans Act on this level.
Centers for Medicare & Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244-1850
Phone: (410) 786-3000
Web site: www.hcfa.gov
Also known as Medical Assistance, this is a health
care program for low-income and other "medically needy" persons.
It is jointly funded by state and federal governments. The Medicaid
program pays for transportation to nonemergency medical appointments
if the recipient has no other means to travel to the appointment.
Developing a local reimbursement relationship with the Medicaid
program office can be an important strategy for tribes to build
self-sustaining transportation systems.
Temporary Aid to Needy Families (TANF)
Administration for Children and Families
U.S. Department of Health and Human Services (HHS)
Division of Tribal Services
370 L'Enfant Promenade
Washington, DC 20447
Phone: (202) 401-9214
Web site: www.acf.dhhs.gov/programs/dts/rcontact.htm
Spurred on by the passage of the landmark welfare
reform legislation--the Personal Responsibility and Work Opportunity
Reconciliation Act of 1996 (P.L. 104-193)--TANF is a program of
block grants to states to help them meet the needs of poor families.
It replaces Aid to Families with Dependent Children, JOBS, Emergency
Assistance, and some other preceding federal welfare programs. Because
of TANF-imposed time limits, states trying to place TANF recipients
in jobs as quickly as possible often use program funds to pay for
transportation, child care, and removing other barriers to workforce
participation.
Other sources of funding may include
the following: Vocational rehabilitation grants; APRIL (has
provided demonstration project funding for transportation projects
in past); the Veterans Administration; the U.S. Department of Agriculture
(agency with primary responsibility for rural economic and community
development); HHS (funds a variety of human services transportation
through the AOA, Head Start, Medicaid, and other programs); the
Administration for Native Americans (another HHS agency with a limited
amount of funding available for American Indian social and economic
development activities, which can include transportation); and DOT
(Shawn, 2002).
5. Who provides assistance with compliance?
When service obligations provided for by the legislation
of the Federal Government are not met, certain departments field
these concerns. Access to transportation services for individuals
with disabilities has been established as a requirement under ADA
as well as other legislation detailed above. The following contact
points should be used when initial attempts to resolve a concern
at the time and place of the experience are not successful.
The Access Board
1331 F Street NW, Suite 1000
Washington, DC 20004-1111
Phone: (202) 272-5434; (800) 872-2253
TTY/TDD: (202) 272-5449; (800) 993-2822
Fax: (202) 272-5447
E-mail: info@access-board.gov
Web site: www.access-board.gov
The Access Board is an independent federal agency
devoted to clarifying standards and requirements to provide accessibility
for people with disabilities. It operates with about 30 staff and
a governing board of representatives from federal departments and
public members appointed by the President. The Board has three key
responsibilities: developing and maintaining accessibility requirements
for the built environment, transit vehicles, telecommunications
equipment, and electronic and information technology; providing
technical assistance and training on these guidelines and standards;
and enforcing accessibility standards for federally funded facilities.
6. What legislation on the horizon could impact
transportation service funding? How do you keep informed about the
impact of pending legislation on transportation in tribal communities?
Developing relationships with grant program administrators
and working closely with state agencies and transportation organizations
will go far in keeping you informed about legislation that may impact
your transportation program. Because many applications are competitive
and must be reapplied for annually, continuing to develop and evaluate
your program, being responsive to your community's needs, and maintaining
open communication lines with your grant administrators are all
the more important. Maintaining a diverse funding portfolio will
also help you to weather any unforeseen budget cutbacks.
By advocating at the state and federal levels through
participation in boards, councils, associations, and related transportation
organizations, you can also ensure that the needs of your community
are understood by those who work to shape legislation and develop
grant programs in the first place. Each year, there are opportunities
to impact legislation and work for change. Sen. Max Baucus (D-Mont.)
and several of his colleagues recently introduced a bill entitled
the Maximum Economic Growth for America through Rural, Elderly and
Disabled Transit Investment Act (MEGA RED Act). This bill seeks
to improve transit service in rural areas, including for the elderly
and persons with disabilities. This bill also has provisions that
would positively impact tribes operating transportation systems
on tribal lands.
References
Alflen, Larry. (September 24, 2002). Telephone interview
by Martina Whelshula.
American Indian Disability Technical Assistance Center
(AIDTAC). (2002). AIDTAC Resource Book. Montana: The University
of Montana, Rural Institute on Disabilities.
American Indian Disability Technical Assistance Center
(AIDTAC). (2001). A Short Guide to Developing Disability Infrastructure
on Reservations. Missoula, MT: The University of Montana, Rural
Institute on Disabilities.
Community Transportation Association of America, National
Transit Resource Center. (2002). Transportation in Indian country:
Getting started. Edited by Intersoft Corporation. Retrieved October
1, 2002, from www.ctaa.org/ntrc/ctap/pubs/tribe.asp.
Gonzales, Linda, Tom Seekins, and Devva Kasnitz. (1999).
Taking on rural transportation. Excerpt from Issue Brief in Independent
Living and Disability Policy, 1(4). World Institute on Disability.
Retrieved September 25, 2002, from http://april.umt.edu/Taking.htm.
Langwell, Kathy, and Janet Sutton. (2002). People
with Disabilities on Tribal Lands: Education, Health, Rehabilitation,
and Independent Living. Washington, DC: National Council on Disability.
National Transit Resource Center. (2002). Public and
community transportation glossary. Edited by Intersoft Corporation.
Retrieved September 30, 2002, from www.ctaa.org/ntrc/glossary.asp.
Shawn, Kelly. American Indian Transportation: Issues
and Successful Models. RTAP National Transit Resource Center, Technical
Assistance Brief Number 14. Edited by Intersoft Corporation. Washington,
DC: Community Transportation Association of America. Retrieved October
1, 2002, from
www.ctaa.org/ntrc/rtap/pubs/ta/am-ind.asp.
Templer, Arlene. (September 10, 2002). Telephone interview
by Martina Whelshula.
Zeilinger, Chris. (September 24, 2002). Telephone
interview by Ara Walline.
Key Elements of Promising Programs
Background
Indian country embodies some of the most diverse cultures,
communities, political structures, and natural environments the
nation knows. Therefore, it stands to reason that each tribe addresses
the unique circumstances of tribal members with disabilities in
very different ways. The project task was to find those tribes in
the nation that demonstrated leadership in creating awareness, developing
programs, adopting tribal laws, and meeting the needs of its tribal
members with disabilities. Leaders and advocates in the Indian country
disability movement recommended tribes that best exemplified successful
practices. Of the 16 tribes recommended, 10 were selected for follow-up
interviews.
The interview questions addressed tribal government
support through the development of disability laws, support services,
major barriers for people with disabilities, access and barriers
to health care, children with disabilities being treated differently,
available employment services through the tribe, and what types
of information or resources would be helpful to tribes. The responses
by tribal programs were overwhelmingly positive, producing a wealth
of information and wisdom.
Throughout the interviews, certain themes emerged
that reached across each tribe. These themes appeared to be the
key elements of success for their programs. This rich information
is to be shared with all tribal communities desiring to improve
their tribal community environment for members with disabilities.
The following section summarizes key elements for these promising
practices in tribal communities.
Leadership
In the course of interviewing the tribes, it became
increasingly evident that the program took on the qualities and
characteristics of its leadership. Common elements shared by each
program director were as follows:
- Passion
Each of the program directors demonstrated this trait in shared
thoughts and action. Their passion was conveyed not only through
descriptions of their program and the services delivered, but in
the difficulties many programs transcended over time.
- Perseverance
In the face of many challenges and obstacles, the program leaders'
belief in their work helped individuals to keep moving and fighting
for changes when the task seemed almost impossible.
- Vision
Each program leader believed in the possibilities for change in
their tribal communities and seemed to have mental pictures and
plans demonstrated by the many unique and innovative approaches
to addressing the huge gaps in services for tribal members with
disabilities.
- Commitment
The majority of program leaders had worked in their program for
several years; they were determined to create change to improve
the quality of life and services for tribal members with disabilities.
- Change Agents
These program leaders pushed for creative and different ways of
doing things that sometimes made them unpopular with others who
favored the status quo.
- Consistency
Program leaders who stayed with their programs for many years provided
a sense of reliability, stability, and consistency. The element
of consistency nurtured the slow process of growth and occurred
in ways that build upon the many lessons learned through the years.
- Connection to Consumer
These program leaders strive to know their consumers despite some
complex circumstances and multiple variables surrounding programs.
- Agents of Hope
Many of the conditions surrounding the whole issue of disabilities
in Indian country are severe enough to leave consumers and advocates
feeling a sense of hopelessness. Some program leaders have described
the bleak realities of tribal members with disabilities. In the
face of some very real and despairing conditions, these program
leaders try to embody a positive sense of hope, inspiring consumers
to hang in there; change is coming.
Most program leaders will tell you that they hold
only one part of the total effort needed to improve the quality
of life for tribal members with disabilities. The leaders described
the many people who have given so much to the success of the services.
Humility was evident as these leaders expressed excitement in how
segments of their tribal community fought long and hard for change
that resulted in improvements. When they speak of success, they
do not speak solely in terms of a personal success; rather, they
speak of success in terms of a collective effort by other community
members who have expressed their own passion in the work.
Leadership Characteristics
A program leader who embodies the qualities and characteristics
of passion, perseverance, vision, commitment, change, consistency,
and connection, and who is seen as an agent of hope, can influence
the success of a program greatly.
Responsiveness to the Needs of the Consumer
Successful programs require staff to know their consumers
well. This requires moving beyond the initial identification of
consumer needs to the development of personal relationships with
consumers in order to truly understand the realities experienced
by tribal members with disabilities. These programs tailor their
services around the unique needs presented in each tribal community
and around each consumer.
Innovation in Removing Barriers
"Necessity is the mother of invention" is a phrase
that exemplifies the motivation behind many innovative programs
throughout Indian country. The personal diligence and leadership
of individuals with disabilities and/or their family members have
helped to reshape tribal communities and create more awareness,
break down barriers, and push for expanded services and advocacy.
Through their advocacy, tribal programs have realigned programs
to create seamless services and more comprehensive support.
Effective Collaboration
A key factor for a successful program rests in the
program's ability to effectively collaborate between agencies, programs,
and funding sources. Those programs whose staff have extensive knowledge
and awareness of other programs and services were able to develop
the most comprehensive and innovative programs. All 10 of these
tribes have demonstrated how their creative collaborations increased
the success of their programs in serving tribal members with disabilities.
Advocacy Strength
Advocacy is another key program success factor. Advocacy
seems to be an inherent process of the work in Indian country. It
is a primary source of support for tribal members with disabilities
who don't know how to or can't advocate for themselves. Advocacy
comes in many forms and is multidimensional. It is evident from
the many voices of program leaders that it is essential to successfully
serve people with disabilities.
Support from Tribal Leadership
Every tribal program included in this report noted
that tribal leader support was an important factor in the success
of the program. However, tribal leader support looked very different
from tribe to tribe. Although not all tribes have laws protecting
the rights of tribal members with disabilities, some have personnel
policies and procedures, while other programs feel supported by
their tribal leadership in some way.
Conclusion
Combinations of the elements identified from promising
practices observed in existing programs seem to be aligned with
comments by tribal leader Chief Joseph, Nez Perce: "The earth is
the Mother of all people, and all people should have equal rights
on it." In the development of local policies, processes, and programming
to serve and protect the rights of tribal members with disabilities,
the power of collaboration and overarching awareness of local tribal
culture must be considered. Unless programs are culturally responsive,
consumers will not patronize the services offered. Knowing the consumer
through meaningful inclusion in planning and hiring and risking
innovation in an attempt to design a program that fits consumer
needs rather than making the consumer fit the program design are
also critical for success. Combined support from tribal leadership,
committed and culturally responsive program staff, and positive
results for people with disabilities in Indian country can enhance
their empowerment.
Advocating Change Self-Advocacy
Considering the number of programs and services a
person with disabilities interacts with on a day-to-day basis, success
depends a great deal on your resolve. The maze of programs and services
can and will be frustrating to understand and deal with. For the
most part, it may not be possible to have an advocate present who
understands your overall journey. In many cases, it may be just
you. Self-advocacy can be a truly liberating and empowering experience
while you seek to improve your current situation or your overall
quality of life.
All birds, even those of the same species, are
not alike, and it is the same with animals and with human beings.
The reason WakanTanka does not make two birds, or animals, or
human beings exactly alike is because each is placed here by WakanTanka
to be an independent individuality and to rely upon itself.
-Shooter, Teton Sioux (StoneE Producktions,
1996)
Self-advocacy among Native Americans with disabilities
brings its own unique challenges in many ways. Native Americans
have struggled with oppression for several hundred years. It is
a constant struggle to have our voices heard and to fight for our
own self-determination as a people. The journey for Native Americans
with disabilities is the same fight against oppression and in some
cases our own family or tribal community may be the oppressor. Lack
of awareness and understanding about disabilities creates an environment
that feels oppressive and leaves many feeling frustrated and powerless.
The self-advocacy movement is a civil rights movement
in many ways, as well. It is about improving the civil rights of
people who have been and still are oppressed, ignored, devalued,
and segregated because of how they are viewed as people who have
or are labeled as having developmental disabilities (Shoultz, 2002).
Self-Advocacy...What Is It?
- A civil rights movement for every person to have
control over one's own life so people with disabilities are treated
the same as everyone else.
- Beliefs and values
- Being a person first
- Being able to make our own decisions
- Believing in my value as a person
- Having other people believe in you as a person
(Fletcher and Keilson, 2002)
Giving Voice to Your Life Choices
Self-advocacy is a life-long personal pursuit
of control over one's own circumstances. It is the act of advocating
for what one wants, for how one desires to live, for how one wants
to be treated, within one's family, community and services, and
it does not end with one concession or victory.
-Bonnie Shoultz (2002)
If you find talking to others difficult because it
is uncomfortable or you are extremely shy, this doesn't have to
keep you from communicating what you want and need in your life.
If you find it hard to communicate with people or ask for what you
want and need, find a friend or family member who can speak for
you. Many times another person with a disability makes the best
spokesperson in these situations simply because that person understands
the situation from personal experience. Typically, there is someone
in each tribal community who would be more than willing to assist
in any way possible.
Speaking Up About Services
Self-advocacy means people with disabilities
speaking up and speaking out for their rights. For people who
can't speak, it may mean having someone interpret what you want
to say.
-Michael Kennedy and Patricia Killius
(2002)
"Now, self-determination means running my own life
and directing my personal care assistants on how best to assist
me in my personal care. Now, people treat me like a human being
who knows what I want and who needs support to live my life. They
ask me what I want and how I want it done. They also ask me: what
is the easiest way to get things done, so that I feel comfortable
and they feel comfortable as well. So self-determination doesn't
mean you have to do everything yourself, but it does mean you have
to be in charge of your life to the fullest extent that you possibly
can be" (Kennedy, 2002, p. 1).
Tribes are very different in their awareness and attitudes
about tribal members with disabilities. They are extremely diverse
in their capacity and willingness to address the needs of tribal
members with disabilities. It becomes increasingly important that
consumers speak up about the services offered by tribes, tribal
programs, and county, state, and federal agencies.
The system...needs to support the idea of teamwork
and power sharing between people and their helpers. The system
is there to assist, offering guidance but not threatening us if
we don't take the advice. The system also needs to support the
idea that people should be able to live how they want to, even
if the professionals would live differently. This always means
listening to us, really listening, and giving us feedback that
is honest but respectful.
-Michael Kennedy and Bonnie Shoultz
(2002)
Jo White, of the Pine Ridge Quad Squad, teaches self-advocacy
by telling consumers that if there are no access ramps into a building
for you, and they don't provide access after you have requested
them, then you plant yourself on the steps of that building and
make them carry you into the building. You keep doing that, she
says, and they will finally get tired of carrying you and build
you a ramp.
Use whatever means you have to speak up and state
what you need and how you would like it done. There may be times
when you have to dig for services. Some tribes report that there
are times when disability agencies don't tell you about all of the
available resources and services; you may have to dig for the information
and explore all of the avenues. You may be fortunate enough to have
a tribal service provider who knows "the ropes" and can help you
get the best service possible, or you may have a program staff that
is new and knows nothing. Your own best advocate is yourself.
The City of San Antonio Disability Access Office has
developed the following Self-Advocacy Cycle guide with information
provided by the National Information Center for Handicapped Children
and Youth to help you advocate for yourself. The four steps are
targeting, preparing, influencing, and following through.
Step 1: Targeting
Identify individual, family, or group needs and the
organizations or resources responsible for addressing these needs:
- Medical
- Therapeutic
- Family support
- Legal
- Financial
- Housing
- Recreation
- Barrier removal
- Problem diagnosis/assessment
- Education
- Independent living skills
- Social/emotional development
Step 2: Preparing
Prepare to participate in decisionmaking sessions
on how best to meet your needs.
Have a friend or advocate come with you to decisionmaking
meetings. Do your homework: Know the organization's personnel (names,
addresses, phone numbers), so you can contact them for help and
information. Know your rights and the services you are eligible
to receive. Be positive; leave feelings of resentment at home.
Step 3: Influencing
You have control. Just ask for what you need.
-Jo White, Pine Ridge Quad Squad
Influence decisionmakers to adopt your desired approach
for addressing your needs. When using the telephone or writing letters,
- Check with whom you are talking in order to avoid
repeating your story.
- Identify yourself and specifically state the purpose
of your call.
- Always be prepared to describe the essential aspects
of needs that are relevant to the agency that you are calling.
- Have records available and encourage immediate
action.
- Know exactly the purpose of your call and stay
on that purpose until it has been achieved. If you're unsatisfied,
ask to speak to someone else.
- Communicate a sense of teamwork: "How can we make
this happen?"
- Know exactly what, when, and where your next steps
are before hanging up.
Step 4: Following Through
Check to be certain that the agreements made are carried
out.
Keep good records: It is up to you (the self-advocate)
to check to see if the services that you worked hard to get are
being delivered. There is no end to the process of self-advocacy.
Self-advocates must reassess their needs and the services available
to meet their needs on an ongoing basis. Each stage in a person's
or group's development potentially means new needs, new decisionmakers
to influence, and new follow-up visits. Being a truly effective
self-advocate is not an easy task! It demands tenacity and perseverance.
What Would You Do As a Self-Advocate?
- Know your rights
- Speak up for yourself
- Express your feelings
- Solve problems, get things done
- Make choices and make your own decisions
- Decide how support is given
- Have influence over your own life
- Help each other to express your feelings and thoughts
- Take control over your life
- Take part in things that affect your own life
- Allow yourself to make your own mistakes
- Form groups (Fletcher and Keilson, 2002)
Guidelines for Writing a Resolution
While advocating for changes affecting people with
disabilities within a tribal system, it is sometimes necessary to
begin with the development of tribal policy. One of the most effective
ways to initiate change is through the presentation of resolutions.
Each tribe and Indian organization has its own procedures set out
for the creation and approval of resolutions. This section provides
general guidelines on how to develop and present a resolution along
with sample resolutions approved by the National Congress of American
Indians.
Purpose of Submitting a Resolution
The purpose of writing a resolution is to provide
a formal procedure whereby the members of the tribal governing body
can give input concerning policy and activities. Tribal leaders
and community advocates can set policy and direction through committees
by way of resolutions during tribal governing procedures. A resolution
is a means of expressing an opinion on a pressing matter or of recommending
that some action be taken by the tribal governing body or some other
agency.
Useful types of resolutions include the following:
- A request that the tribal governing body develop
protections and accommodations for tribal members with disabilities
- A request that the tribal governing body establish
a new program or activity or reconsider a current tribal program
or activity
- A request that the tribal governing body change
its operating procedures
When drafting and sponsoring a resolution, keep in
mind that the wording must be carefully crafted and accurately defined.
The resolution should be clear, concise, and specific. Sponsors
should expect to introduce resolutions from the floor and to make
impromptu defenses of the document throughout the session. Review
existing tribal resolutions and follow that format.
Resolution Format
Resolutions may originate from
- Tribal government leaders
- Community advocates
- Organization members
The resolution format needs to include the resolution
number, title, date, a "whereas" section that clearly defines the
problem and possible resolution, certification by the tribe or organization
leaders, a "refer to" designation, and the contact information for
the person filing the resolution form. These components are detailed
in the descriptions that follow.
- Resolution Number: Supplied by the organization's
secretary.
- Title: Should reflect the action for which the
resolution calls.
- Date: Date submitted.
- Whereas: Many times a tribal governing body will
have a template for the introductory "Whereas." The subsequent
"Whereas" statements should be written clearly to define the problem
and state that a solution is possible. Please remember that the
"Whereas" parts are not voted on and should be limited to three
or four statements in order to ensure that the focus remains on
the resolved portion of the resolution.
- Resolved: Each "resolved" requests action by the
tribal/organization governing body.
- Certification: This section certifies that the
resolution was formally adopted by the tribal/organization governing
body.
- Refer to: Each tribal/organization governing body
has its own referral process. Check with tribal government/organization
leaders or the designated secretary.
- Author/Contact Person: The individual who drafted
the resolution and who can be contacted for clarification.
Sample Resolutions
Following are examples of existing resolutions to
demonstrate how these components appear in their final form.
The National Congress of American Indians
Resolution # PSC-99-006
Title: The Establishment of a National American
Indian Disability Technical Assistance Center
WHEREAS, we, the members
of the National Congress of American Indians of the United States,
invoking the divine blessing of the Creator upon our efforts and
purposes, in order to preserve for ourselves and our descendants
the inherent sovereign rights of our Indian nations, rights secured
under Indian treaties and agreements with the United States, and
all other rights and benefits to which we are entitled under the
laws and Constitution of the United States, to enlighten the public
toward a better understanding of the Indian people, to preserve
Indian cultural values, and to otherwise promote the welfare of
the Indian people, do hereby establish and submit the following
resolution; and
WHEREAS, the National Congress
of American Indians (NCAI) is the oldest and largest national organization
established in 1944 and composed of representatives of and advocates
for national, regional, and local tribal concerns; and
WHEREAS, the health,
safety, welfare, education, economic and employment opportunity,
and preservation of cultural and natural resources are primary goals
and objectives of NCAI; and
WHEREAS, one in three American
Indians, or 759,000 tribal members, report having a disability;
and
WHEREAS, tribal people and
tribal people with disabilities are interested in improving services,
outreach, and training but do not have access to disability-related
technical expertise, equity in funding, and disability Civil Rights
laws; and
WHEREAS, NCAI has provided
support and acknowledgment of the need for an American Indian Disability
Technical Assistance Center that is respectful of tribal sovereignty
and cultural diversity to serve American Indians and Alaska Natives
through their Green Bay Resolution GRB-98-042; and
WHEREAS, the following
entities have begun to meet to discuss the establishment of a National
American Indian Disability Technical Assistance Center (see attached):
U.S. Senate Committee on Indian Affairs; National Council on Disability
(NCD); Office of Public Liaison - The White House; HHS; Department
of Education's Office of Special Education Programs (OSE), Office
of Special Education & Rehabilitation Services (OSERS), NIDRR, and
the Rehabilitative Services Administration (RSA); DOJ, Office of
Tribal Justice; DOJ, Civil Rights Division; Office of Intergovernmental
Affairs; National Congress of American Indians; Department of Labor;
and American Indian Rehabilitation Rights Organization of Warriors
(AIRROW).
NOW THEREFORE BE IT RESOLVED,
that NCAI does hereby work through the Sub-Committee on Disability
Issues and strongly recommends the participation of the following
entities: Indian Health Services; Bureau of Indian Affairs; HUD
- Office of Native American Programs; National American Indian Housing
Council (NAIHC); National Council on Independent Living (NCIL);
Administration for Native Americans (ANA); and Administration on
Developmental Disabilities (ADD); and
BE IT FURTHER RESOLVED, that
NCAI will address Congress and the Administration to support the
establishment of the AIDTAC through existing agency coordination
and collaboration in seeking appropriations; and
BE IT FINALLY RESOLVED, that
NCAI does hereby monitor the progress of the establishment of a
National American Indian Disability Technical Assistance Center
to serve the needs of all American Indian people with disabilities
and their elders.
CERTIFICATION
The foregoing resolution was adopted at the 1999 Annual
Session of the National Congress of American Indians, held at the
Palm Springs Convention Center, in Palm Springs, California, on
October 3-8, 1999, with a quorum present.
_____________________________________
Susan Masten, President
ATTEST: Juana Majel, Recording
Secretary
The National Congress of American Indians
Resolution # PSC-99-005
Title: Creating an American Indian Disability
Liaison Office To Better Coordinate National Disability Policy
WHEREAS, we, the members
of the National Congress of American Indians of the United States,
invoking the divine blessing of the Creator upon our efforts and
purposes, in order to preserve for ourselves and our descendants
the inherent sovereign rights of our Indian nations, rights secured
under Indian treaties and agreements with the United States, and
all other rights and benefits to which we are entitled under the
laws and Constitution of the United States, to enlighten the public
toward a better understanding of the Indian people, to preserve
Indian cultural values, and to otherwise promote the welfare of
the Indian people, do hereby establish and submit the following
resolution; and
WHEREAS, the National Congress
of American Indians (NCAI) is the oldest and largest national organization
established in 1944 and composed of representatives of and advocates
for national, regional, and local tribal concerns; and
WHEREAS, the health, safety,
welfare, education, economic and employment opportunity, and preservation
of cultural and natural resources are primary goals and objectives
of NCAI; and
WHEREAS, 33 percent, or one
in three American Indians/Alaska Natives (759,000 total), have reported
a disability or disabling condition, which equates to the highest
minority population in the United Sates having disabilities; and
WHEREAS, the Indian Health
Services (IHS) and the Bureau of Indian Affairs (BIA) are the designated
agencies to handle the health, education, and welfare of American
Indians/Alaska Natives, yet neither IHS nor BIA have the awareness,
understanding, knowledge, or technical assistance to adequately
address the policy and implementation of services and outreach on
disability issues for people with disabilities and elders in Indian
Country, and there are no coordinated efforts to do so; and
WHEREAS, the national disability
community handles the national policy, service, and outreach for
the United States, yet they have not awareness, understanding, knowledge,
or technical assistance developed to adequately address the cultural
diversity and sovereignty for the Nations, and the national disability
community is to include the American Indian population in their
services and outreach, yet have not adequately done so, and there
are no coordinated efforts to do so.
NOW THEREFORE BE IT RESOLVED,
that NCAI does hereby acknowledge the barriers created when neither
IHS, BIA, or the national disability community have coordinated
efforts to address national disability policy in Indian country;
and
BE IT FURTHER RESOLVED, that
NCAI does hereby acknowledge and recommend the need for the establishment
of an American Indian Disability Liaison Office to better coordinate
national policy for addressing the needs of American Indians/Alaska
Natives with disabilities and their elders; and
BE IT FINALLY RESOLVED, that
NCAI does hereby recommend and monitor the progress of establishing
an American Indian Disability Liaison Office within the Office of
Public Liaison - The White House or in the Office of Intergovernmental
Affairs.
CERTIFICATION
The foregoing resolution was adopted at the 1999 Annual
Session of the National Congress of American Indians, held at the
Palm Springs Convention Center, in Palm Springs, California, on
October 3-8, 1999, with a quorum present.
_______________________________
Susan Masten, President
ATTEST: Juana Majel, Recording
Secretary
Adopted by the General Assembly during the 1999 Annual
Session of the National Congress of American Indians, held at the
Palm Springs Convention Center, in Palm Springs, California, on
October 3-8, 1999.
The National Congress of American Indians
Resolution # JUN-00-018
Title: Continuation Of Disability Projects And
Allocated Funding Within The Current And Next Administration For
Indian Country
WHEREAS, we, the members
of the National Congress of American Indians of the United States,
invoking the divine blessing of the Creator upon our efforts and
purposes, in order to preserve for ourselves and our descendants
the inherent sovereign rights of our Indian nations, rights secured
under Indian treaties and agreements with the United States, and
all other rights and benefits to which we are entitled under the
laws and Constitution of the United States, to enlighten the public
toward a better understanding of the Indian people, to preserve
Indian cultural values, and to otherwise promote the welfare of
the Indian people, do hereby establish and submit the following
resolution; and
WHEREAS, the National Congress
of American Indians (NCAI) is the oldest and largest national organization
established in 1944 and composed of representatives of and advocates
for national, regional, and local tribal concerns; and
WHEREAS, the health, safety,
welfare, education, economic and employment opportunity, and preservation
of cultural and natural resources are primary goals and objectives
of NCAI; and,
WHEREAS, projects and allocated
funding have been created within the present Administration; and,
WHEREAS, the current Administration
and its federal agencies are beginning to address the issues of
disability in Indian country through work groups and specific disability
entities under the Department of Health and Human Services; and,
WHEREAS, the incoming Administration's
practice is to change priorities; and,
NOW THEREFORE BE IT RESOLVED,
that NCAI recommends continued allocation for disability projects
in Indian country that would enhance the tribes' ability to serve
Native American people with disabilities; and,
BE IT FINALLY RESOLVED, NCAI
does hereby urge federal agencies to continue to work in collaboration
with each other and the tribes to address the immense disability
issues facing Indian country.
CERTIFICATION
The foregoing resolution was adopted at the 2000 Mid-Year
Session of the National Congress of American Indians, held at the
Centennial Hall in Juneau, Alaska, on June 25-28, 2000, with a quorum
present.
_____________________________
Susan Masten, President
ATTEST: Juana Majel, Recording
Secretary
Adopted by the General Assembly during the 2000 Mid-Year
Session of the National Congress of American Indians, held at the
Centennial Hall in Juneau, Alaska, on June 25-28, 2000.
Resolution No. ____________
SAMPLE RESOLUTION
OF THE GOVERNING BODY OF
_______________________________________
_______________________________________
A RESOLUTION TO SUPPORT THE ESTABLISHMENT OF NEEDED
ACCESSIBILITY TO NATIVE AMERICANS WITH DISABILITIES
BE IT RESOLVED BY THE COUNCIL OF THE ___________________________
THAT THERE IS A NEED TO PROVIDE ACCESSIBLITY TO NATIVE AMERICANS
WITH DISABILITIES:
WHEREAS, the _____________________
respect the lives of all of our people and recognize that our people
are the most important tribal resource; and
WHEREAS, the _____________________,
utilizing the authority vested in them pursuant to the Tribal Constitution,
has authority to protect the health, security, and general welfare
of the _______________________; and
WHEREAS, the ______________________
recognize the need for tribal facilities, including recreational
areas, pow-wow grounds, and other tribal areas that are operated
and maintained by the _____________________ to be in compliance
with the spirit of the American with Disabilities Act of 1990, Public
Law 101-336 (104 Stat. 327) ("ADA"); and
WHEREAS, the _______________________recognize
that no individual shall be discriminated against on the basis of
disability in the full and equal enjoyment of the goods, services,
facilities, privileges, advantages, and accommodations of any place
of tribal accommodation; and
WHEREAS, the _______________________further
recognize that the objective of ADA is to provide mobility for Americans
with disabilities and to enable them to lead normal and productive
lives; and
WHEREAS, the ______________________are
aware that an estimated 14 percent of the Native American population
have disabilities and are denied social and economic enjoyment taken
for granted by others who have no disabilities, e.g., employment
and recreational activities, and
WHEREAS, the ______________________
are also aware that respondents to a recent survey of the American
Indian Disability Legislation indicated that approximately 67 percent
of the public buildings on the various Indian reservations are accessible,
leaving almost one-fourth of the public buildings inaccessible;
and
WHEREAS, the ______________________
have identified a need to develop a tribal policy implementing ADA
in our present facilities, as well as any future (new or reconstructed)
facilities; and
NOW, THEREFORE, BE IT RESOLVED,
that the ____________________recognize that our people with disabilities
are entitled to accessibility to our tribal facilities, recreational
sites, pow-wow grounds, and other areas.
BE IT FURTHER RESOLVED, that
the ___________________ are committed to developing a tribal policy
to address and comply with ADA.
AND BE IT FURTHER RESOLVED, that
there shall be an established committee to assist in the review
process addressing the application of appropriate ADA accessibility
guidelines.
AND BE IT FURTHER RESOLVED,
that the ____________________________shall direct the Tribal Division
of _____________ and _______________, and any other tribal department
whose involvement will be necessary to address and meet the guidelines
of ADA and to participate in said committee to ensure compliance.
CERTIFICATION The foregoing
resolution was adopted by the Tribal Council on the ____ day of
_____, ____, with a vote of ____ for, ____opposed, and ____ not
voting, pursuant to authority vested in________________________
by ___________ as amended.
___________________________________________
Chair, Tribal Council
ATTEST:
___________________________________________
Executive Secretary
* Thanks to the Confederated Salish and Kootenai Tribes
for use of their tribal resolution to improve the overall quality
of life for tribal members with disabilities.
References
Fletcher, Trudy, and Keilson, Jeff, KY-SPIN, Inc.
(2002). Self-advocacy. Retrieved October 7, 2002, from PNP Associates
and Kentucky Council on Developmental Disability, www.kyspin.com/self_advocacy.htm.
Kennedy, Michael, The Center on Human Policy. (2002).
Self-determination. Retrieved from September 27, 2002, from http://soeWeb.syr.edu/thechp/mikeself.htm.
Kennedy, Michael, and Patricia Killius, The Center
on Human Policy. (2002). Self-Advocacy: Speaking for Yourself. Recorded
and edited by Deborah Olson, 1986. Retrieved September 27, 2002,
from http://soeWeb.syr.edu/thechp/saspeak.htm.
Kennedy, Michael, and Bonnie Shoultz, The Center on
Human Policy. Thoughts about self-advocacy. Retrieved September
27, 2002, from http://soeWeb.syr.edu/thechp/thoughts.htm.
Shoultz, Bonnie, The Center on Human Policy. (2002).
More thoughts on self-advocacy: the movement, the group, and the
individual. Retrieved September 27, 2002, from http://soeWeb.syr.edu/thechp/moretho.htm.
StoneE Producktions. (1996). Shooter, Teton Sioux.
In Quotes From Our Native Past. Retrieved November 4, 2002,
from www.ilhawaii.net/~stony/quotes.html.
White, Jo. (September 9, 2002). Telephone interview
by Martina Whelshula.
Federal Disability Law and Tribes
Background
Individuals with disabilities living on tribal lands
face a complex legal environment. Because Indian tribes enjoy the
"inherent powers of a limited sovereignty which has never been extinguished,"
tribal lands are subject to the jurisdiction of tribal governments,
long recognized as distinct political entities. This sovereignty
may also affect the application of federal regulations to tribes.
Federally recognized Indian tribes, as sovereign self-governing
nations, are protected from private lawsuits under the doctrine
of "sovereign immunity." Tribes can be sued only if they agree to
waive their sovereign immunity for that purpose.
Individuals with disabilities who are concerned about
their rights and protections guaranteed under the Rehabilitation
Act of 1973 (29 U.S.C. §§ 701 et seq.), or the Americans with Disabilities
Act of 1992 (42 U.S.C. §§ 12101 et seq.), may face unique barriers
when seeking enforcement by a tribal government.
Understanding Government-to-Government Relationships
Because of tribal sovereignty, a unique relationship
exists between tribal governments and the Federal Government. This
"government-to-government" relationship requires the Federal Government
to recognize the tribal right to self-governance. In addition, the
Federal Government must uphold its trust obligations and respect
treaty rights.
To further this government-to-government relationship,
the Federal Government announced a policy of consultation with tribal
governments in Executive Order #13175 (November 6, 2000). The policy
requires meaningful consultation with tribal officials on any regulatory
policies that have tribal implications. Federal agencies are required
to consult with tribes during the development of new policies. When
possible, federal agencies must grant tribes the maximum administrative
discretion possible. Agencies are required to encourage tribes to
formulate and implement their own policies, establish standards,
and consult with tribes when developing federal standards.
The Americans with Disabilities Act (ADA) and Tribes
Title I: Title I of ADA requires
that employers with 15 or more employees provide qualified individuals
with a disability with an equal opportunity to benefit from the
full range of employment benefits available to others. Title I of
ADA restricts discrimination in hiring, promotions, pay, and other
privileges of employment. Employers must make reasonable accommodation
for the known physical or mental limitations of otherwise qualified
individuals with disabilities, unless it results in an undue hardship.
However, Title I categorically excludes tribes as employers.
Title II: On June 22, 1999,
the Supreme Court decided a landmark ruling interpreting Title II
of the Americans with Disabilities Act. This decision, in Olmstead
v. L.C. (527 U.S. 581 (1999)), found that Title II of ADA requires
states to provide community-based treatment for persons with mental
disabilities when the state's treatment professionals determine
that such placement is appropriate, the affected persons do not
oppose such treatment, and the placement can be reasonably accommodated.
When considering whether the placement can be reasonably accommodated,
it is necessary to consider the resources available to the state
and the needs of others with mental disabilities. The practical
application of this ruling is that states must help to provide the
least restrictive level of care for people with disabilities, moving
away from institutionalization and toward home- and community-based
care. This could present new opportunities for tribal governments
to develop home- and community-based services that are reimbursed
by Medicaid or other sources.
Title III: In passing Title
III of ADA, Congress announced the purpose as providing "a clear
and comprehensive national mandate for the elimination of discrimination
against individuals with disabilities." Title III of ADA attempts
to accomplish this goal by prohibiting discrimination in public
accommodations. Based on Congress' intent to end discrimination
and the statute's broad language, federal courts have ruled that
Title III of ADA applies to tribes.
However, a federal court finding that a statute is
applicable to a tribe is not the same as finding a waiver of tribal
sovereign immunity. While Title III of ADA may apply to tribes,
sovereign immunity prohibits private suits for enforcement against
tribes in federal courts. In such cases, individuals with disabilities
may have a right without a remedy.
Although Title III of ADA does provide for suits brought
for enforcement by DOJ, no such action has been brought.
The Rehabilitation Act and Tribes
The Rehabilitation Act prohibits discrimination based
on disability in programs conducted by federal agencies, including
programs receiving federal funds and in federal employment. In determining
employment discrimination, the Rehabilitation Act uses the same
standards as Title I of ADA.
Section 121 of the Rehabilitation Act authorizes the
Rehabilitation Services Administration to make grants to tribes
for the purpose of VR services. Tribes accepting these grants, and
generally other federal funds, agree to comply with federal law.
However, this agreement does not amount to a waiver of sovereign
immunity, which protects tribes from suit in federal court. Again,
individuals with disabilities may have a right without a remedy.
The Individuals with Disabilities Education Act
(IDEA) and Tribes
The purpose of IDEA is to ensure that every child
has available to him/her a free, appropriate public education that
meets individual needs. IDEA intends to improve the educational
results of children with disabilities. To reach this goal, IDEA
requires first that a child suspected to have a disability be evaluated
by the school. Second, IDEA requires an Individualized Education
Program (IEP) be developed by a specific team of people including,
among others, the parents and teachers, for each eligible child
with a disability. The IEP must be based upon individual needs.
IDEA provides that the Secretary of the Interior receive
funds from the Secretary of Education to educate children with disabilities
aged 5 to 21 on reservations in elementary and secondary schools
operated and funded by the Bureau of Indian Affairs (BIA). IDEA
also provides an administrative enforcement process that BIA-funded
schools are subject to, based upon the school's status as a local
educational agency for funding purposes. Tribally operated schools
that accept IDEA funds from BIA must also abide by the provisions
of the law.
If IDEA requirements are not met, IDEA provides for
dispute resolution mechanisms. For BIA-funded schools, BIA acts
as a state with responsibility for ensuring that IDEA requirements
are met and for operating mechanisms for resolving disputes. These
mechanisms include (1) mediation; (2) formal complaint process;
and (3) due process or litigation.
Advocacy
The outcomes above may suggest that tribal governments
are failing to meet their responsibility to individuals with disabilities;
the reality is that current funds may not be significant enough
to improve accessibility on tribal lands. Although entangled in
this complex legal environment, individuals with disabilities living
on tribal lands have potential options. A tribe could waive its
sovereign immunity to allow suits brought under ADA, tribal courts
could enforce federal disability legislation, or tribal governments
could pass ordinances providing protections similar to those in
federal statutes, such as ADA or Rehabilitation Act.
The political power of people with disabilities, their
families, and advocates could help to move tribal governments toward
adopting such ordinances. However, model legislation may be inappropriate
because tribes vastly differ from one another. The legislation addressing
disabilities may be more effective if specifically developed for
particular tribes. Tribes that have worked on such ordinances include
the Salish Kootenai, the Navajo, and the St. Regis Mohawk.
Improvements in accessibility will incur costs. The
Federal Government, in fulfilling its trust obligations, can and
should provide funding to meet these requirements. A tribe's immunity
from suit in federal court should not result in a tribe's conclusion
that ADA is inapplicable. In drafting ADA, Congress makes it clear
that the Act is a "national mandate" to end discrimination. Furthermore,
the Act, other comparable legislation, and the legislative histories
suggest that Indian tribes should be the recipient of grants to
ensure compliance.
References
Florida Paraplegic Association, Inc. v. Miccosukee
Tribe of Indians of Florida, 166 F.3d 1126 (11th Cir. 1999).
Sanderlin v. Seminole Tribe, 243 F.3d 1282
(11th Cir. 2001).
United States v. Wheeler, 435 U.S. 313, 322
(1978).
Worcester v. Georgia, 31 U.S. 515, 559 (1832).
National Initiatives, Federal Agencies, and
National Organizations Background
Federal agencies and national organizations play important
roles in increasing accessibility for individuals with disabilities.
Both were integral in passing the Americans with Disabilities Act
(ADA) in 1990, and both continue working today to improve the opportunities
for individuals with disabilities in education, transportation,
and participation in their communities.
Initiatives
Even with all the success in the 12 years since the
passage of ADA, the Federal Government is still working to improve
access for individuals with disabilities. The descriptions of the
initiative that follows demonstrate the current administration's
position on improving services for individuals with disabilities.
New Freedom Initiative
Announced by President Bush on February 1, 2001, the
New Freedom Initiative is an effort to remove barriers preventing
people with disabilities from accessing new technologies, education,
and full integration into American life. The Initiative announces
an administration effort to increase funding for the Individuals
with Education Act, integrating Americans with disabilities into
the workforce and promoting full access to community life. (Visit
www.whitehouse.gov/news/freedominitiative/freedominitiative.html
to view the legislation.)
To further the goals of the New Freedom Initiative,
President Bush announced Executive Order 13217. This Order, issued
June 18, 2001, directs the Federal Government to assist state governments
in implementing the Supreme Court's decision in Olmstead v. L.C.
The Order commits the attorney general, secretaries of Health and
Human Services, Education, Labor, and Housing and Urban Development,
as well as the Commissioner of Social Security, to improve the availability
of community-based services for people with disabilities.
Federal Disability Agencies
Congress has enacted disability legislation with the
role of program administration and enforcement existing within many
diverse federal agencies. The needs of individuals with disabilities
cut across all aspects of life; the number and type of agencies
providing services for individuals with disabilities reflect this
wide spectrum. The "Guide to Disability Rights Laws," published
by the Department of Justice (DOJ), provides an excellent introduction
to the services and agencies that are outlined in the following
pages (DOJ, 2001).
Social Security
The Social Security Administration has two types of
programs that can benefit people with disabilities:
- Social Security Disability Insurance:
This program pays benefits to you and/or certain members of your
family, if you become disabled and you are insured, meaning that
you worked long enough and paid into the Social Security tax system.
To qualify for benefits you must first have worked in jobs covered
by Social Security. Then you must have a medical condition that
meets Social Security's definition of disability. Generally, this
program will pay cash benefits to a person who has not been able
to work for a year or more because of a disability.
- Supplemental Security Income
(SSI): This program will pay benefits based upon financial
need to people with disabilities. SSI was established to assist
people who are aged, blind, or have a disability and have little
or no financial income. It provides cash payments to meet basic
needs such as food, clothing, and shelter. If you get SSI, you
will usually also get Food Stamps and Medicaid assistance.
How does Social Security define
a "disability"? The Social Security Administration uses the
same basic definition for both Social Security Disability Insurance
and SSI programs. A disability means that you have a physical or
mental problem that keeps you from working and is expected to last
at least a year or to result in death.
How do I apply for SSI? To
apply for SSI you can contact your local Social Security office
or contact the main office at 1-800-772-1213 to make an appointment
with a Social Security representative. If you have an advocate or
family member who will make these appointments for you, be sure
to give that person written permission to speak on your behalf.
Other things to bring to your SSI appointment:
- Your Social Security card or a record of your
Social Security number
- Your birth certificate or other proof of your
age
- Information about the home you live in, such as
your mortgage or lease and landlord's name
- Payroll slips, bank books, insurance policies,
burial fund records, and other information about your income and
the things that you own (remember that American Indians and Alaska
Natives can exempt up to $2,000 in assets from trust income related
to their status as tribal members)
- If you're signing up for disability-the names,
addresses, and telephone numbers of doctors, hospitals, and clinics
that have seen you
- Proof of U.S. citizenship
- Checkbook or other banking or credit union information
with your account number so that you can have your benefits automatically
deposited into your account once approved
How do I apply for Social Security
Disability Insurance benefits? It will take longer to apply
for Social Security Disability Insurance benefits than for other
programs under Social Security, usually 60 to 90 days. You should
make an appointment with your local Social Security office to get
your application moving. This office will send your application
to the Disability Determination Services office located in your
state to determine whether you meet the definition of a person with
a disability under the law.
You should bring the following information with you
to your appointment:
- Social Security number and proof of age for each
person applying for payments
- Names, addresses, and phone numbers of doctors,
hospitals, clinics, and institutions that treated you, and dates
of treatment
- Names of all medications you are taking
- Medical records from your doctors, therapists,
hospitals, clinics, and caseworkers
- Laboratory test and test results
- A summary of where you have worked and the kind
of work you did
- A copy of your W-2 form (Wage and Tax Statement)
or, if self-employed, your federal tax return for the past year
- Dates of prior marriages if your spouse is applying
(NOTE: If you don't have all the information, start
your application process and work with the Social Security office
to get the additional information.)
Never take "no" for an answer.
Even if you are declined for benefits under SSI or Social Security
Disability, you should appeal that decision and work with an advocate
or your Social Security office to get whatever additional information
you need to qualify.
For more information about the appeals process, you
may call the toll-free number, 1-800-772-1213, and ask for the SSI
fact sheet called "The Appeals Process," publication number 05-10041,
and "Social Security And Your Right to Representation," publication
number 05-10075. You can also access publications on the Internet
at www.ssa.gov/pubs/englist.html.
All requests for appeals should be sent to your local office; you
can find the address of your local office at www.ssa.gov/locator/.
National Council on Disability (NCD)
NCD is an independent federal agency consisting of
15 members appointed by the President and confirmed by the U.S.
Senate. The goal of NCD is to promote policies that ensure equal
opportunity for all individuals with disabilities. By making recommendations
to the President and Congress, NCD works to ensure that all individuals
with disabilities have an opportunity to work, live independently,
and integrate into all aspects of society.
Department of Justice
Title III of the Americans with Disabilities Act authorizes
the U.S. Attorney's office to sue entities discriminating against
individuals with disabilities. DOJ is also responsible for enforcing
Section 504 of the Rehabilitation Act, which prohibits any program
or activity receiving federal funds from discriminating against
any qualified individual with a disability.
Equal Employment Opportunity Commission (EEOC)
Title I of ADA prohibits disability-based discrimination
by employers. ADA directs complaints under Title I to be filed with
the EEOC. Complaints must be filed with the EEOC within 180 days
of the discriminatory act.
Rehabilitation Services Administration (RSA)
The Rehabilitation Act authorizes grants to tribes
to carry out VR programs. The Rehabilitation Act authorizes RSA
under Section 121 to make grants to tribal governments for the costs
of vocation rehabilitation of Indians with disabilities.
Department of the Interior
The Bureau of Indian Affairs is located within the
Department of the Interior. BIA, which administers tribal schools,
is responsible for the education of individuals with disabilities
within these schools. BIA's larger mission is to enhance the quality
of life, to promote economic opportunity, and to protect and improve
the trust assets of American Indians, Indian tribes, and Alaska
Natives. BIA seeks to accomplish this by delivering quality services
and maintaining government-to-government relationships within the
spirit of Indian self-determination. (Currently, access to the Department
of the Interior Web site is restricted in compliance with a court
order.)
Administration on Developmental Disabilities (ADD)
The ADD ensures that individuals with developmental
disabilities and their families participate in the design of and
have access to culturally competent services, supports, and other
assistance and opportunities that promote independence, productivity,
and integration and inclusion into the community.
Department of Labor
In the fiscal year 2001 Department of Labor appropriation,
Congress approved an Office of Disability Employment Policy (ODEP)
to be headed by an assistant secretary. ODEP's mission is to provide
leadership to increase employment opportunities for adults and youth
with disabilities. ODEP is a federal agency in the Department of
Labor.
Administration on Aging (AOA)
AOA provides home- and community-based services to
millions of vulnerable and hard-to-reach older persons through programs
funded under the Older Americans Act. Among these services are nutrition,
such as home-delivered meals or meals served in congregate settings;
transportation; legal assistance; and health promotion counseling
and training. AOA's National Family Caregiver Support Program focuses
on those caring for family members who are chronically ill or who
have disabilities. The program also helps those who are caring for
younger family members, such as grandchildren and those with mental
retardation or developmental disabilities.
Centers for Medicare and Medicaid Services (CMS)
CMS is a federal agency within the U.S. Department
of Health and Human Services. CMS runs the Medicare and Medicaid
programs-two national health care programs that benefit about 75
million Americans. And with the Health Resources and Services Administration,
CMS runs the State Children's Health Insurance Program, a program
that is expected to cover many of the approximately 10 million uninsured
children in the United States.
Department of Housing and Urban Development (HUD)
HUD offers programs, assistance, and loan programs
specifically for Native American tribes, organizations, and sometimes
individuals. HUD offers information on basic homebuying, fair housing,
and housing counseling.
Office of Special Education Rehabilitation Services
(OSERS)
OSERS provides leadership to achieve full integration
and participation in society of people with disabilities by ensuring
equal opportunity and access to, and excellence in, education, employment,
and community living. OSERS supports programs that help educate
children and youth with disabilities and supports research to improve
the lives of individuals with disabilities.
Regional Rehabilitation Continuing Education Programs
(RRCEPs)
RRCEPs are training centers that serve a federal region
by providing a broad integrated sequence of training activities
that focus on meeting recurrent and common training needs of employed
rehabilitation personnel. General RRCEPs provide training for state
VR agency staff. Community Rehabilitation Program (CRP) RRCEPs provide
training programs for staff of related public and private nonprofit
rehabilitation agencies. Generally, RSA funds one general and one
CRP RRCEP per Department of Education Region (Region IV has two
general RRCEPs).
Rural Utilities Service
Rural Utilities Service is a Rural Development Agency
of the U.S. Department of Agriculture. It helps rural America finance
electric, telecommunications, and water and wastewater projects
and make loans and grants for rural distance learning and telemedicine
projects. It is also a policy and planning rural advocacy agency.
Small Business Administration (SBA)
SBA, created by Congress in 1953, helps America's
entrepreneurs form successful small enterprises. SBA's program offices,
in every state, offer financing, training, and advocacy for small
firms. SBA works with thousands of lending, educational, and training
institutions nationwide. If your business is independently owned
and operated, not dominant within its field, and within certain
size standards, the SBA can help.
Temporary Assistance for Needy Families (TANF)
All states, territories, the District of Columbia,
and all federally recognized tribes in the lower 48 states and 13
specified entities in Alaska are eligible. TANF programs must operate
under plans approved by HHS. Needy families with children are determined
to be eligible by the state, territory, or tribe in accordance with
the state or tribal plan submitted to HHS. Needy families must meet
state or tribal eligibility requirements.
Administration for Native Americans (ANA)
ANA promotes the goal of social and economic self-sufficiency
of American Indians, Alaska Natives, Native Hawaiians, and other
Native American Pacific Islanders, including Native Samoans. Self-sufficiency
is that level of development at which a Native American community
can control and internally generate resources to provide for the
needs of its members and meet its own economic and social goals.
Social and economic underdevelopment is the paramount obstacle to
the self-sufficiency of Native American communities and families.
ANA is the only federal agency serving all Native
Americans, including over 500 federally recognized tribes, 60 tribes
that are state recognized or seeking federal recognition, Indian
organizations, over 200 Alaska villages, Native Hawaiian communities,
and populations throughout the Pacific Basin.
National Disability Organizations
A number of private organizations are dedicated to
improving services for individuals with disabilities, including
organizations concerned specifically with the needs of American
Indians and Alaska Natives.
American Indian Disability Technical Assistance Center
(AIDTAC)
The University of Montana Rural Institute
Center of Excellence in Disability Education, Research, and Services
52 Corbin Hall
Missoula, MT 59812-7056
Phone: (800) 732-0323; (406) 243-5467
AIDTAC, funded by a grant from the RSA, is an informational
and technical assistance resource available to tribes. AIDTAC's
goal is to assist tribes in formulating and implementing programs
and policies that will reduce barriers to independent living and
to provide opportunities for employment to individuals with disabilities.
American Indian Rehabilitation Research and Training
Center (AIRRTC)
Institute for Human Development
Northern Arizona University
PO Box 5630
Flagstaff, AZ 86001-5630
Phone: (928) 523-4791
Fax: (928) 523-9127
TTY/TDD: (928) 523-1695
Web site: www4.nau.edu/ihd/airrtc/located.htm
The mission of AIRRTC is to improve the quality of
life for American Indians and Alaska Natives with disabilities through
the conduct of research and training that will result in culturally
appropriate and responsive rehabilitation services, to improve employment
outcomes and facilitate access to services for American Indians
and Alaska Natives with disabilities, and to increase the participation
of American Indians and Alaska Natives in the design and delivery
of rehabilitation services for employment outcomes.
Consortia of Administrators for Native American Rehabilitation
(CANAR)
Institute for Human Development
Northern Arizona University
PO Box 5630
Flagstaff, AZ 86001-5630
Phone: (928) 523-4791
Fax: (928) 523-9127
TTY/TDD: (928) 523-1695
Web site: www4.nau.edu/ihd/airrtc/located.htm
*Through September 30, 2003, CANAR will use the AIRRTC
office as its administrative headquarters.
The mission of CANAR is to serve as an avenue for
collaboration and cooperation between administrators of rehabilitation
projects serving Native American persons with disabilities and to
increase and enhance the quality of services, resulting in positive
outcomes for Native American persons with disabilities.
Intertribal Deaf Council (IDC)
PO Box 17664
Salem, OR 97305
TTY/TDD: (301) 577-5665
Fax: (503) 304-1961
E-mail: intertribaldeaf@aol.com
Web site: www.deafnative.com
The IDC is a nonprofit organization of deaf and hard-of-hearing
American Indians whose goals are similar to many Native American
organizations. The IDC promotes the interests of its members by
fostering and enhancing their cultural, historical, and linguistic
tribal traditions. The council not only discusses issues related
to the social, educational, economic, and environmental well-being
of its members but also strives to provide useful information on
human rights and resources for solutions.
National Youth Leadership Network (NYLN)
Web site: www.nyln.org/index.php
The National Youth Leadership Network (NYLN) is dedicated
to advancing the next generation of disability leaders. It accomplishes
this task by doing the following:
- Promoting leadership development, education, employment,
independent living, and health and wellness among young leaders
representing the diversity of race, ethnicity, and disability
in the United States
- Fostering the inclusion of young leaders with
disabilities into all aspects of society at national, state, and
local levels
- Communicating about issues important to youth
with disabilities and the policies and practices that affect their
lives
American Association of People with
Disabilities
1819 H Street NW, Suite 330
Washington, DC 20006
Phone: (800) 840-8844; (202) 457-0046
Fax: (202) 457-0473
Web site: www.aapd.com
The American Association of People with Disabilities
is a nonprofit, nonpartisan, cross-disability membership organization
whose goals are unity, leadership, and impact. Membership is $19.95
per year.
American Indian Rehabilitation Rights
Organization of Warriors (AIRROW)
Phone: (406) 883-3817
AIRROW is a grassroots, unincorporated organization
whose goal is to improve the lives of American Indians with disabilities.
American Indian Higher Education
Consortium (AIHEC)
121 Oronoco Street
Alexandria, VA 22314
Phone: (703) 838-0400
Fax: (703) 838-0388 fax
E-mail: aihec@aihec.org
AIHEC's mission is to support the work of tribal colleges
and the national movement for tribal self-determination. AIHEC identifies
four objectives: maintain commonly held standards of quality in
American Indian education; support the development of new tribally
controlled colleges; promote and assist in the development of legislation
to support American Indian higher education; and encourage greater
participation by American Indians in the development of higher education
policy.
Association of Programs in Rural Independent Living
(APRIL)
Linda Gonzales
5903 Powder Mill Road
Kent, OH 44240
Phone: (330) 678-7648
Fax: (330) 678-7658
Web site: http://april.umt.edu
APRIL is a national network of rural independent living
centers, other programs, and individuals concerned with the unique
aspects of rural independent living. APRIL is a nonprofit, 501(c)(3)
organization that promotes independence and strives for full rights
and benefits of persons with disabilities living in rural America.
Council of State Administrators of Vocational Rehabilitation
(CSAVR)
Suite 330
4733 Bethesda Avenue
Bethesda, MD 20814
Phone: (301) 654-8414
Web site: www.rehabnetwork.org
Institute for Community Inclusion/UCE
UMass Boston
100 Morrissey Boulevard
Boston, MA 02125
Phone: (617) 287-4300
Fax: (617) 287-4352
Web site: www.communityinclusion.org
The Institute supports employing people with disabilities
in community settings; supporting children and young adults with
special health care needs; accessing general education and transitioning
from school to adult life; expanding local recreation and school
activities to include people with disabilities; promoting technology
that aids participation in school/community/work activities; building
organizations' abilities to serve culturally diverse people with
disabilities; and examining the impact of national and state policies
on people with disabilities and their families.
Job Accommodation Network (JAN)
West Virginia University
PO Box 6080
Morgantown, WV 26506-6080
Phone: (800) 526-7234; (800) ADA-WORK; (304) 293-7186
Fax: (304) 293-5407
Web site: http://janWeb.icdi.wvu.edu
JAN is a free consulting service that provides information
about job accommodations, ADA, and the employability of people with
disabilities.
Minority Business Development Agency (MBDA)
U.S. Department of Commerce
Minority Business
Washington, DC 20230
Phone: (202) 482-0404
Fax: (202) 482-2678
E-mail: help@mbda.gov
Web site: www.mbda.gov
MBDA provides management and technical assistance;
information, and advice on starting, managing, and expanding a business
enterprise to socially or economically disadvantaged individuals.
MBDA also assists public- and private-sector organizations to increase
purchases from minority vendors. MBDA does not provide any grants,
loans, or loan guarantees to purchase, start, or run a business.
MBDA will, however, fund organizations to provide management and
technical assistance to minority entrepreneurs. MBDA administers
the Minority Business Development Center Program, which helps existing
minority-owned firms expand and avoid failure. Centers assist with
business financial planning, management, and marketing, bid estimating
and construction bonding, loan packing, and other business services.
National American Indian Housing
Council (NAIHC)
900 2nd Street NE, Suite 305
Washington, DC 20002
Phone: (202) 789-1754; (800) 284-9165
Fax: (202) 789-1758
Web site: http://naihc.indian.com/index.html
National Congress of American Indians
(NCAI)
1301 Connecticut Avenue NW, Suite 200
Washington, DC 20036
Phone: (202) 466-7767
Fax: (202) 466-7797
Web site: www.ncai.org
NCAI's mission is to inform the public and the Federal
Government on tribal self-government, treaty rights, and a broad
range of federal policy issues affecting tribal governments. NCAI
includes a subcommittee on disabilities.
National Council on Independent
Living (NCIL)
1916 Wilson Boulevard, Suite 209
Arlington, VA 22201
Phone: (703) 525-3406
TTY/TDD: (703) 525-4153
Fax: (703) 525-3409
E-mail: ncil@ncil.org
Web site: www.ncil.org
NCIL is a membership organization that advances the
independent living philosophy and advocates for the human rights
of, and services for, people with disabilities to further their
full integration and participation in society.
National Indian Council on Aging
(NICOA)
10501 Montgomery Boulevard NE, Suite 210
Albuquerque, NM 87111-3846
Phone: (505) 292-2001
Fax: (505) 292-1922
Web site: www.nicoa.org/index1.html
NICOA serves as the foremost nonprofit advocate for
the nation's (estimated) 296,000 American Indian and Alaska Native
elders. NICOA strives to better the lives of the nation's indigenous
seniors through advocacy, employment training, dissemination of
information, and data support.
National Indian Education Association
(NIEA)
700 North Fairfax Street, Suite 210
Alexandria, VA 22314
Phone: (703) 838-2870
Fax: (703) 838-1620
E-mail: niea@niea.org
Web site: www.niea.org
NIEA's mission is to support traditional Native cultures
and values, to enable Native learners to become contributing members
of their communities, to promote Native control of educational institutions,
and to improve educational opportunities and resources for American
Indians, Alaska Natives, and Native Hawaiians throughout the United
States.
National Indian Health Board (NIHB)
101 Constitution Avenue NW, Suite 8B09
Washington, DC 20001
Phone: (202) 742-4262
Fax: (202) 742-4285
E-mail: jgrimm@nihb.org
Web site: www.nihb.org/
NIHB represents tribal governments operating their
own health care delivery systems through contracting and compacting,
as well as those receiving health care directly from the IHS. NIHB
is a nonprofit organization that conducts research, policy analysis,
program assessment and development, national and regional meeting
planning, training and technical assistance programs, and project
management. Services are provided to tribes, area health boards,
tribal organizations, federal agencies, and private foundations.
United Parent Syndicate on Disabilities (UPSD)
The Drew Building
5727 Palazzo Way, Suite B
Douglasville, GA 30134
Phone: (770) 577-3307; (202) 223-4295 (Washington, DC, office)
E-mail: united_parent@mindspring.com
Web site: www.peppac.org
UPSD is a nonprofit organization dedicated to empowering
parents. UPSD provides its members with the most up-to-date information
on the activities of all three branches of government that affect
individuals with disabilities and their families.
Office of Indian Education Programs
(OIEP)
1849 C Street NW
MS-3512 MIB
Washington, DC 20240
Phone: (202) 208-6123
Fax: (202) 208-3312
Web site: www.oiep.bia.edu
The mission of BIA's OIEP is to provide quality education
opportunities from early childhood through life in accordance with
each tribe's needs for cultural and economic well-being in keeping
with the wide diversity of Indian tribes and Alaska Native villages
as distinct cultural and governmental entities.
Oyate´ Project-"Metakuy´
Oyasin" or "All My Relations"
Center for Continuing Education in Rehabilitation
6912 220th Street SW #105
Mountlake Terrace, WA 98043
Phone: (425) 774-4446; (888) 377-0100
Fax: (425) 774-9303
Web site: www.ccer.org/natamer/oyate.htm
The Oyate´ Project, administered through Western Washington
University's Capacity Building Project, offers assistance to Native
American Vocational Rehabilitation Projects (Section 121) in recruiting,
retaining, and developing staff in order to enhance their capacity
to serve their consumers.
Montana Rural Institute on Disabilities (RID)
The University of Montana
52 Corbin Hall
Missoula, MT 59812
Phone: (800) 732-0323; (406) 243-5467
Fax: (406) 243-4730
Web site: http://ruralinstitute.umt.edu
RID, a part of the national network of programs funded
by the ADD, is committed to assisting in the provision of interdisciplinary
training, research, service demonstration programs, leverage of
funds, and information dissemination to support the independence,
productivity, and inclusion into the community of people with developmental
disabilities.
RTC: Rural-Research and Training Center on Rural Rehabilitation
Services
The University of Montana
52 Corbin Hall
Missoula, MT 59812
Phone: (888) 268-2743; (406) 243-2460
Fax: (406) 243-4730
Web site: http://rtc.ruralinstitute.umt.edu
RTC: Rural is funded by the U.S. Department of Education.
Rural Americans with disabilities and those who serve them experience
problems with access to transportation and housing, employment and
self-employment, independent living services, health and wellness
facilities, and inclusion in community planning and activities.
Our goal is to use scientific methods to develop solutions to these
wide-ranging problems.
San Diego State University (SDSU)
Interwork Institute
3590 Camino Del Rio North
San Diego, CA 92108
Phone: (619) 594-4220
Fax: (619) 594-4208
In 1994, SDSU's Interwork Institute was awarded a
cooperative agreement to establish the Rehabilitation Research and
Training Center of the Pacific to address critical issues related
to the needs of Pacific Islanders with disabilities. Research and
training is conducted in the State of Hawaii, the Republic of Palau,
the Federated States of Micronesia (Chuuk, Kosrae, Pohnpei, Yap),
the Republic of the Marshall Islands, the Territory of Guam, the
Commonwealth of the Northern Marianas, and the Territory of American
Samoa. SDSU is an AIDTAC partner.
United Southern and Eastern Tribes,
Inc. (USET)
711 Stewarts Ferry Pike, Suite 100
Nashville, TN 37214
Phone: (615) 872-7900
Fax: (615) 872-7417
Web site: http://usetinc.org/
USET, Inc., composed of 25 nations, is dedicated to
enhancing the development of Indian tribes, improving the capabilities
of tribal governments, and assisting the member tribes and their
governments in dealing effectively with public policy issues and
in serving the broad needs of Indian people.
World Institute on Disability (WID)
510 16th Street, Suite 100
Oakland, CA 94612
Phone: (510) 763-4100
TTY/TDD: (510) 208-9496
Fax: (510) 763-4109
E-mail: Webpoobah@wid.org
Web site: www.wid.org
WID is a nonprofit, public policy center dedicated
to promoting independence and full societal inclusion of people
with disabilities.
Work Incentives Transition Network (WITN)
Virginia Commonwealth University
Rehabilitation Research and Training Center
1314 West Main Street
Richmond, VA 23284
Phone: (804) 828-1851
E-mail: tcblanke@saturn.vcu.edu
Web site: www.vcu.edu/rrtcWeb/witn/ssi.htm
WITN is a collaborative project funded by the U.S.
Department of Education, Office of Special Education Programs. The
Network's purpose is to increase educators', family members', transition
age students', and advocates' awareness of Social Security Work
Incentives for school-aged youth with disabilities including the
Plan for Achieving Self-Support, the Impairment Related Work Expense,
and the Student Earned Income Exclusion.
National Association of Protection
and Advocacy Systems (NAPAS)
900 2nd Street NE, Suite 211
Washington, DC 20002
Phone: (202) 408-9514
Fax: (202) 408-9520
E-mail: info@napas.org
Web site: www.protectionandadvocacy.com
NAPAS works in partnership with people with disabilities
to protect, advocate for, and advance their human, legal, and service
rights. NAPAS strives toward a society that values all people and
supports their rights to dignity, freedom, choice, and quality of
life.
Native American Association of Protection and Advocacy
DNA--People's Legal Services, Inc.
PO Box 392
Shiprock, NM 87240
Phone: (505) 368-3216
Fax: (505) 368-3220
E-mail: Tyanan@dnalegalservices.org
Consumers who contact these organizations can also
learn of any available assistance located closer to their homes.
Legal staff can suggest additional resources to help children and
parents.
References
Castle, Michael Rep. (2002). Opening Statement of
Hearing on "Rethinking Special Education: How to Reform the Individuals
with Disabilities Education Act." Committee on Education and the
Workforce, Subcommittee on Education Reform. Retrieved May 2, 2002,
from
http://edworkforce.house.gov/hearings/107th/edr/idea/5202/oscastle.htm.
United States Department of Justice (DOJ), Civil Rights
Division. (2001, August). Guide to disability rights laws. Retrieved
August 2002, from www.usdoj.gov/crt/ada/cguide.htm.
Disability Etiquette Handbook People
with disabilities are people first. They are not their conditions
or diseases. Lack of awareness about disabilities can lead to unintended
stereotypes and discrimination. How we view and communicate with
and about people with disabilities shape our relationships. This
guiding principle is as true in American Indian and Alaska Native
communities as it is in the general population. American Indian
and Alaska Native people with disabilities want to be dealt with
as people.
How we refer to people with disabilities in our communication
is important. For example, a person is not an epileptic but rather
a person who has epilepsy. In any reference, article, announcement,
or advertisement, "people with disabilities" is the appropriate
and preferred initial reference. Subsequent references can use the
terms "person with a disability" or "individuals with disabilities"
for grammatical or narrative reasons. Please refer to the Glossary
of Acceptable Terms below for a complete listing of acceptable terms
and appropriate applications.
This section contains information and awareness-building
resources to assist in developing effective and respectful communication
practices within our Native communities. This resource can be particularly
useful to new program staff who have not worked in the area of disabilities
before and to help orient tribal leaders and other community program
staff who want to better understand how to work effectively for
people with disabilities in tribal communities. The AI/AN consumers
who served on the Technical Expert Panel that designed this Toolkit
believed very strongly that a brief guide was needed to help tribal
programs and tribal leaders understand fundamental dos and don'ts
regarding people with disabilities.
Dos and Don'ts
- Do learn where to find and recruit people with
disabilities.
- Do learn how to communicate with people who have
disabilities.
- Do ensure that your applications and other company
forms do not ask disability-related questions and that they are
in formats that are accessible to all persons with disabilities.
- Do have written job descriptions that identify
the essential functions of each job.
- Do ensure that requirements for medical examinations
comply with the Americans with Disabilities Act (ADA).
- Do relax and make the applicant feel comfortable.
- Do provide reasonable accommodations that the
qualified applicant will need to compete for the job.
- Do treat an individual with a disability the same
way you would treat any applicant or employee-with dignity and
respect.
- Do know that among those protected by ADA are
qualified individuals who have AIDS or cancer or who are mentally
retarded, traumatically brain-injured, deaf, blind, or learning
disabled.
- Do understand that access includes not only providing
environmental access, but also making forms accessible to people
with visual or cognitive disabilities and making alarms and signals
accessible to people with hearing disabilities.
- Do develop procedures for maintaining and protecting
confidential medical records.
- Do train supervisors on making reasonable accommodations.
- Don't assume that persons with disabilities do
not want to work.
- Don't assume that alcoholism and drug abuse are
not real disabilities, or that recovering drug abusers are not
covered by ADA.
- Don't ask if a person has a disability during
an employment interview.
- Don't assume that certain jobs are more suited
to persons with disabilities.
- Don't hire a person with a disability if that
person is at significant risk of substantial harm to the health
and safety of the public and there is no reasonable accommodation
to reduce the risk or harm. Do not make this decision yourself.
Consult with an attorney or personnel director when making such
a determination. Your assumptions about a disability may be incorrect
or unfounded.
- Don't hire a person with a disability who is not
qualified to perform the essential functions of the job even with
a reasonable accommodation.
- Don't assume that you have to retain an unqualified
employee with a disability.
- Don't assume that your current management will
need special training to learn how to work with people with disabilities.
- Don't assume that the cost of accident insurance
will increase as a result of hiring a person with a disability.
- Don't assume that the work environment will be
unsafe if an employee has a disability.
- Don't assume that reasonable accommodations are
expensive.
- Don't speculate or try to imagine how you would
perform a specific job if you had the applicant's disability.
- Don't assume that you don't have any jobs that
a person with a disability can do.
- Don't assume that your work place is accessible.
- Don't make medical judgments.
- Don't assume that a person with a disability can't
do a job because of apparent or nonapparent disabilities.
Conversation Etiquette
When talking to a person with a disability, look at
and speak directly to that person, rather than the companion. When
an interpreter is present, please look at the person who is deaf,
not the interpreter, when communicating.
Relax. Don't be embarrassed if you happen to use accepted
common expressions such as "See you later" or "Got to be running
along" that seem to relate to the person's disability.
To get the attention of a person who is deaf or hard
of hearing, tap the person on the shoulder, wave your hand, or,
in a large group, flicker the lights. Look directly at the person
and speak clearly, naturally, and slowly to establish whether the
person can read lips. Not all persons who are deaf can lip-read.
Those who can will rely on facial expression and other body language
to help in understanding. Show consideration by placing yourself
under or near a light source and keeping your hands and food away
from your mouth when speaking. Keep mustaches well-trimmed. Shouting
won't help. Written notes to the person who is deaf or hard of hearing,
however, may help facilitate the communication process.
When talking with a person in a wheelchair for more
than a few minutes, sit in a chair, whenever possible, in order
to place yourself at the person's eye level to facilitate conversation.
When greeting a person with a severe loss of vision, always identify
yourself and others who may be with you.
Example: On my right is Candice Red Shawl.
When conversing in a group, give a vocal cue by announcing
the name of the person to whom you are speaking. Speak in a normal
tone of voice, indicate in advance when you will be moving from
one place to another, and let it be known when the conversation
is at an end.
Listen attentively when you're talking to a person
who has a speech disability. Keep your manner encouraging rather
than correcting. Exercise patience rather than attempting to speak
for a person with a speech difficulty. When necessary, ask short
questions that require short answers or a nod or a shake of the
head. Never pretend to understand if you are having difficulty doing
so. Repeat what you understand, or incorporate the interviewee's
statements into each of the following questions. The person's reactions
will clue you in and guide you.
If you have difficulty communicating, be willing to
repeat or rephrase a question. Open-ended questions are more appropriate
than closed-ended questions.
Examples:
Closed-Ended Question: You
were a case manager in Social Services with the Three Affiliated
Tribes for seven years. Is that correct?
Open-Ended Question: Tell
me about your recent position as a case manager.
Do not shout at a person with a disability. Shouting
distorts speech for a deaf or hard-of-hearing person and is inappropriate
for a blind or low vision person who can hear.
Glossary of Acceptable Terms
Person with a disability. (Unacceptable:
Handicapped or impaired)
Disability, a general term used
for functional limitation that interferes with a person's ability
to walk, hear, or lift, for example. It may refer to a physical,
mental, or sensory condition. (Unacceptable: Impaired, handicap,
handicapped person, or handicapped)
People with cerebral palsy, people
with spinal cord injuries. (Unacceptable: Cerebral palsied,
spinal cord injured. Never identify people solely by their disability.)
Person who had a spinal cord injury,
polio, a stroke, etc., or a person who has multiple sclerosis, muscular
dystrophy, arthritis, etc. (Unacceptable: Victim. People
with disabilities do not like to be perceived as victims for the
rest of their lives, long after any victimization has occurred.)
Has a disability, has a condition
of (spina bifida, etc.), or born without legs, etc. (Unacceptable:
Defective, defect, deformed, vegetable. These words are offensive,
dehumanizing, degrading, and stigmatizing.)
Deaf. Deafness often refers to a
person who has a total loss of hearing. Hard of hearing refers to
a person who has a partial loss of hearing within a range from slight
to severe. Hard of hearing also describes a person who communicates
through speaking and speech-reading, and who usually has listening
and hearing abilities adequate for ordinary telephone communication.
Many hard-of-hearing individuals use a hearing aid. Deaf people
are sometimes able to speak and speech-read, despite profound hearing
loss. Most people who identify themselves as deaf also use sign
language. (Unacceptable: Hearing impaired; deaf and dumb
is as bad as it sounds. The inability to speak does not indicate
lack of intelligence.)
Person who has a mental or developmental
disability. (Unacceptable: Retarded, moron, imbecile, idiot.
These are offensive to people who bear the label.)
Use a wheelchair or crutches; a
wheelchair user; walks with crutches. (Unacceptable: Confined/restricted
to a wheelchair; wheelchair bound. Most people who use a wheelchair
or mobility devices do not regard them as confining. They are viewed
as liberating, a means of getting around.)
Nondisabled; able to walk, see,
hear, etc.; people who are not disabled. (Unacceptable: Healthy,
when used to contrast with "disabled"--Healthy implies that the
person with a disability is unhealthy. Many people with disabilities
have excellent health. Normal--When used as the opposite of disabled,
this implies that the person is abnormal. No one wants to be labeled
as abnormal.)
A person who has (name of disability).
Example: a person who has multiple sclerosis. (Unacceptable:
Afflicted with, suffers from, a victim of--Most people with disabilities
do not regard themselves as victim or afflicted or suffering continually.
Afflicted--a disability is not an affliction.)
Preparing for Sign Language Interpreters
When hiring an interpreter for a presenter who is
deaf or for making presentations to an audience that may include
participants who are deaf, remember that the interpreter is there
to facilitate communication. An interpreter is always a neutral,
uninvolved party. Interpreters are part of the team meant to deliver
accurate and intended messages given by all parties.
The more advance notice that is provided to the interpreter,
the more prepared he/she will be. This process will allow the interpreter
to have the proper time needed for a meeting or event and prevent
"cold" interpreting. Time for preparation is essential to allow
accurate dissemination of the intended messages to the audience.
In addition to the name and type of event, always
provide the name of the event contact person and a phone number.
Give the following information to the interpreter to enhance the
quality of the interpreted meeting/event:
- Clear address and directions to the event and
the location where the interpreter is to check-in.
- Correct spellings of all names of those speaking
or performing.
- A summary of subjects that will be presented by
each speaker. Provide copies of any handouts for the interpreter
prior to the meeting or event.
- A list of terms, acronyms, and words that are
specific to the discussion, such as the usage of IHS (Indian Health
Service) or BIA (Bureau of Indian Affairs).
- Many times the names of tribes are difficult to
interpret, so spellings or any abbreviated descriptions would
be helpful.
If any information to be presented is in a language
other than English, a written interpretation in English will be
needed in advance. Any time you have lights on the presenter you
will also need to have lights for the interpreter, especially if
the event is inside an auditorium or in any dark area.
Resources Regarding Interpreters
Intertribal Deaf Council (IDC)
Web site: www.deafnative.com
IDC promotes the interests of deaf and hard-of-hearing
members to advance issues related to social, educational, economic,
and environmental well-being by fostering and enhancing their cultural,
historical, and linguistic tribal traditions.
The National Association of the
Deaf (NAD)
814 Thayer Avenue
Silver Spring, MD 20910-4500
Phone: (301) 587-1788
TTY: (301) 587-1789
Fax: (301) 587-1791
Web site: www.nad.org/openhouse/affiliates/SAs.html
The NAD is a private, nonprofit constituency organization
with affiliates in each state and the District of Columbia. A complete
listing of state associations can be found at the NAD Web site.
Programs and activities of the NAD include grassroots advocacy and
empowerment; captioned media; certification of American Sign Language
professionals; certification of sign language interpreters; deafness-related
information and publications; legal assistance; policy development
and research; public awareness; and youth leadership development.
Registry of Interpreters for the
Deaf, Inc. (RID)
333 Commerce Street
Alexandria, VA 22314
Voice: (703) 838-0030
TTY: (703) 838-0459
Fax: (703) 838-0454
RID is a national nonprofit association for sign language
interpreters with over 50 state and local affiliate offices. For
additional guidance in working with an interpreter, instructions
on how to hire an interpreter, or links to finding an interpreter,
see the RID Web site.
Service Animals
Over 12,000 people with disabilities in the United
States use service animals; many of those people are in tribal communities.
It is important to know about service animals and to find ways to
ensure safe and comfortable access for people with disabilities
in tribal communities to be accompanied by these vitally important
aids. Service animals should be accommodated in tribal, federal,
and other public buildings in tribal communities. Tribal housing
developments should also consider ways to ensure adequate access
for people with disabilities who use service animals. Although the
most familiar types of service animals are guide dogs used by people
who are blind, service animals assist persons who have other disabilities
as well. Many disabling conditions are invisible. A service animal
is not required to have any special certification.
What Is a Service Animal?
A service animal is not a pet!
According to ADA, a service animal is any animal that
has been individually trained to provide assistance or perform tasks
for the benefit of a person with a physical or mental disability
that substantially limits one or more major life functions.
Service animals/service dogs can be trained to reliably
perform many tasks, including the following:
- Leading a person who has
a visual impairment around obstacles, to destinations (seating,
across street, to/through door, to/into elevator, etc.).
- Sound discrimination to
alert a person who is deaf or hard of hearing to the presence
of specific sounds, such as
- Smoke/fire/clock alarms
- Telephone
- Baby crying
- Sirens
- Another person
- Timers buzzing
- Knocks at door
- Unusual sounds (e.g., things that go bump in
the night, mice in the cabinet)
- General assistance, including
- Mobility (helping person balance for transfer/ambulation,
pulling wheelchair, helping person rise from sitting or fallen
position)
- Retrieval (getting items that are dropped or
otherwise out of reach, carrying items by mouth)
- Scent discrimination (locate items; people;
places, such as bathrooms, elevators, escalators, return path)
- Miscellaneous (e.g., open/close doors and drawers,
help person undress/dress, carry items in backpack, act as physical
buffer to jostling by others, put clothes in washer/remove from
dryer, bark to alert for help)
- Sense and alert owners
to oncoming seizures. It is currently unknown why or how some
dogs are able to do this, but a number of dogs have demonstrated
the ability to warn their owners of oncoming seizures, enabling
the owners to position themselves safely.
- Emotional support, providing
a known, trusting entity to facilitate homeostasis (e.g., maintenance
of blood pressure, respiration, heart rate, temperature) during
potentially difficult episodes. (Delta Society, 2002)
Service Animal Access
The civil rights of persons with disabilities to be
accompanied by their service animals in all places of public and
housing accommodations is protected by the following federal laws:
- Americans with Disabilities Act (1990)
- Air Carrier Access Act (1986)
- Fair Housing Amendments Act (1988)
- Rehabilitation Act (1973)
Service Animal Etiquette
- Do not touch the service animal, or the person
it assists, without permission.
- Do not make noises at the service animal; they
may distract the animal from doing its job.
- Do not feed the service animal; doing so may disrupt
its schedule.
- Do not be offended if the person does not feel
like discussing his/her disability or the assistance the service
animal provides. Not everyone wants to be a walking show-and-tell
exhibit.
Service Animal Resources
The Delta Society
580 Naches Avenue SW, Suite 101
Renton, WA 98055-2297
Phone: (425) 226-7357
Fax: (425) 235-1076
E-mail: info@deltasociety.org
The Delta Society is the leading international resource
for the human-animal bond. The Delta Society has been the force
to validate the important role of animals for people's health and
well-being by promoting the results of research to the media and
health and human services organizations.
Canine Companions for Independence
National Headquarters & Northwest
Regional Center
2965 Dutton Avenue
PO Box 446
Santa Rosa, CA 95402-0446
Phone: (707) 577-1700
TDD: (707) 577-1756
E-mail: info@caninecompanions.org
Dogs for the Deaf
10175 Wheeler Road
Central Point, OR 97502
Voice/TDD: (541) 826-9220
Fax: (541) 826-6696
E-mail: info@dogsforthedeaf.org
Dogs for the Deaf's mission is to rescue and professionally
train dogs to assist people and enhance their lives. Hearing dogs
are chosen from adoption shelters, where they might otherwise be
euthanized if no homes are found for them. By using shelter dogs,
Dogs for the Deaf is able to help alleviate some of the unwanted
dog population by rescuing these dogs, training them, and placing
them in loving homes where they can provide an important service.
The dogs are usually mixed breeds, small to medium in size, and
up to 24 months of age. The trainers look for dogs that are friendly,
energetic, healthy, and intelligent. Each dog is individually evaluated
by a Dogs for the Deaf trainer. Those passing the aptitude tests
are brought back to the facility for a thorough medical evaluation
and needed vaccinations. All dogs are spayed or neutered and then
begin the intensive 4 to 6 months of training.
References
City of San Antonio Disability Access Office/Planning
Department. (2000). Disability Etiquette Handbook.
Delta Society. (2002). The human-animal health connection.
Retrieved October 24, 2002, from
www.deltasociety.org/dsb300.htm#tasks.
|
