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PEOPLE WITH DISABILITIES ON TRIBAL LANDS: EDUCATION, HEALTH CARE,
VOCATIONAL REHABILITATION, AND INDEPENDENT LIVING
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.
Letter of Transmittal
August 1, 2003August 1, 2003
The President
The White House
Washington, DC 20500
Dear Mr. President:
The National Council on Disability (NCD) is pleased
to submit to you this special report entitled People with Disabilities
on Tribal Lands: Education, Health Care, Vocational Rehabilitation,
and Independent Living. We are particularly proud of this report
because it reflects the results of a project that was developed
and guided to completion in conference with American Indian and
Alaska Native (AI/AN) representatives of people with disabilities,
their families, and tribal community leaders.
NCD has targeted the significant, unmet needs of unserved
and underserved people with disabilities, including people from
diverse cultures, as a policy priority. While people from diverse
cultures constitute a disproportionate share of the disability community,
they also have unique needs in addition to those experienced by
other people with disabilities. At 22 percent prevalence, according
to national research data, American Indians and Alaska Natives have
the most disproportionate rate of disabilities of all population
groups, compounded by factors such as high poverty and school dropout
rates, geographic isolation from state or local district rehabilitation
and health care, and limited employment options.
This project examined research on health, rehabilitation,
independent living, and education issues that affect people with
disabilities living in Indian Country. The report discusses views
and perspectives of AI/AN people with disabilities, tribal leaders,
and federal agency representatives identified as productive in meeting
the needs of people with disabilities residing in tribal lands.
This report also assesses and recommends government-to-government
(state to sovereign tribal to U.S. government) improvements in relationships
needed for effective coordination across existing federally funded
projects/programs. In addition, a Toolkit guide providing resource
information was developed for use by consumers, tribal communities,
and people at state, local, and federal levels.
NCD stands ready to facilitate federal agency dialogue
with stakeholders who seek to address jointly the unmet needs of
American Indians and Alaska Natives with disabilities in meaningful
and culturally sensitive ways. It is only then that we can rest
assured that all of our citizens with disabilities have the freedom
to fulfill their dreams, access economic independence, and participate
meaningfully in their communities.
Sincerely,
Lex Frieden
Chairperson
(This same letter of transmittal was sent to the President
Pro Tempore of the Senate and the Speaker of the House of Representatives.)
National Council on Disability Members and Staff
Members
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Hughes Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Specialist
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Acknowledgments
The National Council on Disability’s (NCD) project,
People with Disabilities on Tribal Lands: Education, Health Care,
Vocational Rehabilitation, and Independent Living, was formed and
guided by the powerful sharing of experiences, knowledge, and hopes
of American Indian people with disabilities, their families, and
advocates. These individuals strived to create a new perspective
about what it means to be an American Indian and 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 and not heard.
NCD expresses its gratitude to the team at Kauffman
and Associates, Inc., for drafting this report. Team members include
JoAnn Kauffman, president; Project Director Martina Whelshula; Victor
Paternoster; Tim Spellman; Wendy Thompson; and Ara Walline.
Others who supported the development of this work
and deserve special acknowledgment are Mike Blatchford, consultant;
Desautel Hege Communications; Kathy Langwell and Project HOPE; 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 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,
and Alvin Windy Boy. Thank you 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 people 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; Ela Yazzie-King and Paula Seanez, Navajo Nation; Darlene
Finley, Three Affiliated Tribes; Linda Pratt, Yakama Nation; Larry
Alflen, Pueblo of the Zuni; Steven “Corky” West, Oneida
Nation; and Len Whitebear, Cook Inlet Tribal Council.
Federal and regional officials contributed to
an increased awareness of practices that promote government-to-government
relationships. NCD acknowledges those agencies that offered their
insights into the delicate circumstances of improving government-to-government
relationships between tribes and federal/state governments. Those
agencies who contributed were Indian Health Service, Elder Care;
Region X, Rehabilitation Services; BIA, Special Education; Indian
Health Service, Public Health; American Indian and Alaska Native
Social Security; Administration for Native Americans; and Administration
on Aging, Native American Programs.
CONTENTS
I. Preface
II. Executive
Summary
Summary of Research Findings
Key Elements of Promising Practices in Indian
Country
Barriers and Challenges to Effective Government-to-Government
Relationships
Key Findings And Recommendations
Conclusion
III. Research
Findings
Overview
Method
Technical Expert Panel
Project Strategy
Literature
Review
Definition and Description of the American Indian
and Alaska Native Population Living in Indian Country Overall,
People with Disabilities, and Types of Disabilities
Unique Legal, Environmental, and Economic Factors
Affecting Provision of and Access to Appropriate Services for
People with Disabilities in Indian Country
Barriers to Provision of and Access to Appropriate
Services for People with Disabilities in Indian Country
Assessing the Effectiveness of Strategies for
Reducing Barriers to Provision of and Access to Appropriate
Services
Limitations to Understanding Issues of People
with Disabilities Living in Indian Country
Federal Responsibility to Address Gaps in Knowledge
Key
Respondent Interviews
Tribal Interviews
Key Elements of Promising Practices
Federal Interviews
IV. Government-to-Government
Relationships: Findings and Recommendations
Findings: Barriers to Effective Government-to-Government
Relationships
Recommendations to Increase Effective Government-to-Government
Working Relationships
V. Conclusion
APPENDIX A. The Technical Expert Panel
APPENDIX B. Interview Guide for Discussions
with Federal/State Agency Staff
APPENDIX C. Interview Guide for Discussions
with Tribal Programs
APPENDIX D. Case Studies of Three Tribal Communities
APPENDIX E. Observations of Community Leadership
APPENDIX F. Community Stories of Innovation
APPENDIX G. Mission of the National Council
on Disability
SECTION I
Preface Among the strategies
and decisions that emerged from the National Council on Disability's
May 2000 think-tank process was a commitment by people with disabilities
from diverse cultures, supporters from national advocacy groups,
and the U.S. Congress to (1) investigate different approaches to
advancing disability, civil, and human rights and (2) develop an
informational toolkit with attention to different cultural needs.
American Indian and Alaska Native (AI/AN) people with
disabilities, particularly those who live in Indian country, face
unique circumstances and legal environments that require special
outreach and consultation in addition to the development of culturally
appropriate methods and tools to address their unmet needs for services
and support. This project, People with Disabilities on Tribal
Lands: Education, Health Care, Vocational Rehabilitation, and Independent
Living, was intended to facilitate consultation and input from
AI/AN people with disabilities, tribal leaders, and community organizations,
to obtain information, and to recommend strategies for improving
services to people with disabilities who live in Indian Country.
In addition, the project developed a culturally appropriate Toolkit,
specifically designed to address the unique political and legal
foundations of AI/AN tribal communities. The Toolkit provides background
on education, health, vocational rehabilitation, independent living,
and other services important to people with disabilities; model
approaches; and supporting documentation for improving services
and support to people with disabilities living in Indian Country.
"As a child when I moved to a deaf school off
tribal lands I couldn't participate in my cultural rituals such
as powwows and ceremonies. My life was like a torn piece of paper.
When I could reconnect these ceremonies and my ability to be first
a Native American and then a deaf person-my life came together
again."
-Mark Azure, Intertribal
Deaf Council
SECTION II
Executive Summary
"My disabilities are perceived by my American
Indian and Alaska Native peers as a part of me. I do not feel
as stigmatized as I do in mainstream society. At the same time,
powwows and community tribal events are not sign language interpreted.
How can I learn my traditions from my people without communication
support?"
-Damara Paris, Intertribal
Deaf Council
In passing the 1990 Americans with Disabilities Act
(ADA), Congress announced its purpose to provide "a clear and comprehensive
national mandate for the elimination of discrimination against individuals
with disabilities." This national mandate for the elimination of
discrimination ignored the unique circumstances faced by American
Indians and Alaska Natives with disabilities living in tribal lands.
Caught in a public policy paradox, American Indian and Alaska Native
(AI/AN) people with disabilities are stuck between the sometimes
conflicting priorities of protecting the sovereignty of tribal governments
and ensuring the civil rights guaranteed to all people with disabilities.
AI/AN tribes are sovereign governments and enjoy a
unique government-to-government relationship with the United States
that is based upon treaties, the U.S. Constitution, federal law,
executive orders, and affirming court decisions. In addition to
this unique legal status, Indian Country is disproportionately rural,
which poses a number of logistical and resource challenges to the
provision of and access to social, health, and support services.
Historically, American Indians and Alaska Natives tend to have less
education, greater unemployment, and higher rates of poverty than
people of other racial groups in the United States. Meeting the
needs of people with disabilities living in Indian Country requires
recognition of the unique legal and socioeconomic environment of
tribal communities, as well as an understanding of various AI/AN
cultures and history that shape each community. Appropriate consultation
and input from tribal leaders and tribal members with disabilities
is critical in understanding the depth and complexity of AI/AN cultures.
The activities undertaken through this project explored the complex
weave of federal disability laws, tribal sovereignty, tribal cultures,
perspectives of AI/AN people with disabilities, and the diverse
economic and physical environments in which they find themselves.
The American Indian Disability Legislative Project
(AIDLP) reports that only 6 percent of tribal governments surveyed
are familiar with major disability legislation, such as ADA or Sections
503 and 504 of the Rehabilitation Act of 1975. The survey responses
indicate that only two-thirds of the tribal schools, stores, churches,
and other buildings were accessible to people with disabilities.
Lack of employment opportunities, transportation, financial resources,
and elevated health care costs all add to the numerous inequities
faced by people with disabilities living in Indian Country.
This National Council on Disability (NCD) project
examined research such as the AIDLP and other studies and reports
on health, rehabilitation, independent living, and education issues
that impact people with disabilities living in Indian Country. In
addition, this report discusses views and perspectives of AI/AN
people with disabilities, tribal leaders, and federal agency representatives
identified as productive in meeting the needs of people with disabilities
residing in tribal lands. Finally, this report assesses and recommends
government-to-government (state to sovereign tribal to U.S. government)
improvements in relationships needed for effective coordination
across existing federally funded projects/programs.
Summary of Research Findings
"Everybody has his or her own unique gifts.
It is up to us to find our path. We must show others and teach
people to look beyond differences and find good in everyone."
-Andrea Siow, Hopi Nation
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 as Indian in combination with another race.
Of this total, approximately 944,433 Indian or Alaska Native people
live on federal reservations or on off-reservation trust lands.
Thirty-five states 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. They are known as "Federally Recognized Tribes."
Data from the 1997 Survey of Income and Program Participation
found that 22 percent of the AI/AN population have one or more disabilities.
If we consider 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 American Indians and Alaska
Natives have disabilities.
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 the most frequent
types of disabilities. These studies generally found that the following
types of disabilities are most often reported in Indian community
surveys: spinal cord injury; diabetes complications; blindness;
mobility disability; traumatic brain injury; deafness or hardness
of hearing; orthopedic conditions; arthralgia; emotional or mental
health concerns; learning disabilities; and alcoholism or drug dependence.
This NCD project sought to bring our understanding
of people with disabilities living in tribal lands closer to the
community level. The project tapped the knowledge and experience
of a Technical Expert Panel (TEP) to begin to identify the major
issues related to health, education, vocational rehabilitation,
and independent living for people with disabilities in Indian Country.
In consultation with the TEP, 10 Indian communities were identified
for individual tribal interviews as follows: Confederated Salish
and Kootenai Tribes of the Flathead Reservation (MT), Cook Inlet
Tribe (AK), Hopi Nation (AZ), Navajo Nation (AZ, NM, UT), Oglala
Sioux Tribe (SD), Oneida Nation (WI), The Pueblo of Zuni (NM), St.
Regis Mohawk (NY), Three Affiliated Tribes at Fort Berthold (ND),
and Yakama Nation (WA).
These tribal interviews uncovered specific strategies
and programs implemented at the local community level that have
effectively improved access, protections, and services for people
with disabilities in tribal communities. Several tribes, such as
the Salish and Kootenai Tribes in Montana, the Oglala Sioux Tribe
in South Dakota, and the Navajo Nation in the Southwest, have adopted
tribe-specific ordinances to establish protections and services
for people with disabilities in their communities. The Hopi Nation
in Arizona and the St. Regis Mohawk in New York provide active case
management approaches with extensive outreach and grassroots consumer
involvement. The Pueblo of Zuni of New Mexico place a high priority
on public transportation services as the key to providing assistance
and advocacy for people with disabilities. Six key elements emerged
as common practices across promising programs. These are summarized
below.
Key Elements of Promising Practices in Indian
Country
"The consumers are the leadership. Learn from
the consumer."
-Steven 'Corky' West, Oneida
Nation
- Effective program leadership characteristics:
At the tribal community level, leaders of promising programs commonly
embody qualities of passion, perseverance, vision, commitment,
change agents, consistency, connection to consumers, and a sense
of hope.
- Responsiveness to the consumer: Members
of program staffs embrace people with disabilities as a part of
their teams, developing relationships and shared power in the
planning and implementation of services and programs.
- Innovation in removing barriers:
Breaking down barriers and reshaping tribal communities require
personal and collective creativity/inventiveness and risk taking.
The reshaping of resources can help to provide a seamless array
of supports, programs, and services for people with disabilities.
- Effective collaboration: Program
staff communication and coordination with other nontribal resources
recognize the role of services and resources outside the realm
of individual programs or communities and seek to build bridges
among separate entities. This also requires personal relationship
building.
- Advocacy strength: It is important
to instill a strong sense of advocacy into the program philosophy
and staff approaches to policy and program implementation. The
multiple and disjointed systems that impact people with disabilities
require strong self-advocates and supporters to navigate administrative
barriers.
- Support from tribal leadership: A
common ingredient is strong and committed leadership from elected
tribal officials, although each tribe interviewed for this report
operated differently in its approach to meeting the needs of tribal
members with disabilities.
Barriers and Challenges to Effective Government-to-Government
Relationships
"Sometimes when an elder leaves the home to live
in an institutional setting their spirit is just lost. The foundation
of the family is gone and the cultural unity of the family suffers.
When it is appropriate, day care can help elders and we can see
a difference with this personal care. We have a lot of work to
do to be recognized and know how to access services like these."
-Raho Williams, Navajo
Federal laws designed to protect people with disabilities
are not always enforceable against tribal governments because of
the sovereign immunity and sovereign status that tribal governments
enjoy. The U.S. Supreme Court has yet to rule on whether or not
and to what extent federal disability laws apply to Indian tribes.
In the absence of that, different and sometimes conflicting opinions
are being developed in lower courts. In addition, the services and
resources that should be available to people with disabilities are
not always accessible in tribal communities. Chronic underfunding
of tribal community programs and a lack of physical infrastructure
upgrades create barriers for people with disabilities in these communities.
This NCD report identified barriers and challenges that hamper or
prevent meaningful government-to-government relationships to develop
among tribes and state or federal entities. Such relationships can
help governments better address jointly some of the issues related
to people with disabilities in Indian Country. Based upon a review
of the literature, interviews with tribal officials, and interviews
with federal program administrators, the following major barriers
were identified:
Disjointed coordination among agencies:
- Fragmentation of services across federal
agencies and offices
- Lack of coordination and collaboration among federal,
state, and tribal programs
- Federal travel and budget limitations
- Advocacy made difficult by multiple education
systems (public, BIA, tribal)
Limited knowledge or understanding about tribal communities:
- Lack of federal staff knowledge and training
for federal personnel on the federal trust responsibility to AI/AN
people and on tribal sovereignty
- Agency staff fear of the unknown and unfamiliarity
with AI/AN populations
Limited enforcement of laws protecting people with
disabilities on tribal lands:
- Lack of clarity about legal enforcement
options
- Failure to ensure that the national mandate to
eliminate discrimination against individuals with disabilities
included equal benefits for American Indian and Alaska Natives
with disabilities
Limited local tribal planning to protect and support
people with disabilities:
- Lack of involvement of tribal leaders and tribal
members in the design, development, and implementation of programs
- Limited consumer involvement at all levels of
policy development
- Difficulties in tribal/state relationships
- Limited tribal awareness and access to new strategies
that can better serve people with disabilities
- Historical distrust of the Federal Government
by tribal leaders and members
Key Findings and Recommendations
"You have control. Just ask for what you need."
-Jo White, Quad Squad, Oglala
Sioux Tribe
It is important to note that this NCD study found
a very active and articulate network of AI/AN people with disabilities
who are working through a variety of local and national organizations
to bring important resources to their communities and to reshape
the way tribal governments address their issues. Examples are numerous,
including a one-person sit-in on the steps of a tribal building
to force the tribe to construct a ramp sponsored by the Pine Ridge
Quad Squad; the development of national research expertise found
at the American Indian Rehabilitation Research and Training Center;
and the organization of national advocacy groups such as the Intertribal
Deaf Council and the American Indian Rehabilitation Rights Organization
of Warriors. Through individual self-determination and collective
bravery and persistence, changes are occurring in tribal communities.
Based in large part on the groundwork performed by the AI/AN disabilities
community, this study identified 15 major areas of findings and
corresponding specific recommendations to improve government-to-government
relationships for the benefit of people with disabilities in tribal
communities. Detailed descriptions of these findings and recommendations
are provided in subsequent chapters of this report. The following
is a summary of the five major categories of recommendations proposed
in this report:
Fulfill the federal trust responsibility to AI/AN tribes
and the national mandate for the elimination of discrimination against
individuals with disabilities:
- Clarifying application of federal disability
laws: The Department of Justice should provide robust leadership
to ensure that the protections of ADA are extended to individuals
with disabilities in AI/AN communities, working in close consultation
with tribes and AI/AN people with disabilities.
- Holding federal agencies accountable for information
dissemination and service: Federal agencies must fulfill the federal
trust responsibilities to tribes by assertive efforts to disseminate
pertinent information and by developing culturally specific strategies
to reach out to tribal communities.
- Improving coordination and collaboration among
programs: Culturally responsive strategies should be developed
among the various federal programs intended to serve people with
disabilities to ensure that tribal communities are able to access
important services.
Ensure meaningful consultation and involvement of people
with disabilities and tribal leaders:
- Recognizing and valuing tribal and consumer
consultation: Pursuant to the president's Executive Order on tribal
consultation, federal agencies should engage tribes and consumers
in meaningful consultation to better address issues related to
people with disabilities in tribal communities.
- Improving state and tribal relationships to better
serve people with disabilities: The Department of Education and
other federal agencies supporting state programs and initiatives
should provide leadership and encouragement to improve state and
tribal relationships regarding services to people with disabilities.
- Convening national meeting(s) of key stakeholders
to better address the needs of people with disabilities in tribal
lands. The federal Departments of Justice, Education, Health and
Human Services, Transportation, Housing and Urban Development,
and Interior should collaborate with tribal leadership and Indian
community consumer groups to convene a national summit to begin
to address issues raised in this report and to develop ongoing
collaboration.
Provide tribes with better access to federal resources
and funded programs:
- Providing tribal communities access to Independent
Living Centers: The Department of Education should provide a specific
set-aside in funds to support independent living centers in tribal
communities.
- Increasing access to American Indian Vocational
Rehabilitation Services (AIVRS): Funding for AIVRS must be substantially
increased to allow for more tribes to participate in this important
program and an increase in technical assistance and support to
existing programs.
- Expanding home- and community-based services options
in tribal communities: The Indian Health Service and Centers for
Medicare and Medicaid Services should collaborate to provide necessary
training and technical assistance to tribal health care systems
to provide home- and community-based services and to decrease
unnecessary dependence on institutional care.
Develop cultural competence within federal agencies
and increase agencies' interaction with tribes:
- Expanding cultural competence, training,
and orientation: Each of the federal agencies providing services
and programs targeting people with disabilities should ensure
staff are trained and oriented to understand and engage tribal
communities.
- Recruitment and hiring of AI/AN professionals
and advocates within the federal system: Specific staff positions
to provide liaison between federal programs and tribal communities
should be established for federal agencies and programs. In particular,
the Social Security Administration should provide a Native American
liaison position in each of its federal regional offices for tribal
outreach and advocacy.
Include disability issues among tribal priorities and
federal initiatives in tribal communities:
- Increasing employment opportunities for people
with disabilities in tribal communities: Tribal governments should
consider ways to create expanded employment opportunities for
people with disabilities in their communities.
- Making all public buildings and public infrastructure
in tribal communities accessible to people with disabilities:
Federal departments such as Interior, Transportation, Housing,
and Health and Human Services should collaborate with tribal governments
to identify funds to retrofit tribal buildings and infrastructure
to ensure tribal communities are accessible to people with disabilities.
Conclusion
Effective collaboration among sovereign tribal governments
and federal and state programs is key to successfully addressing
the issues and needs of tribal members with disabilities and descendants
living in Indian Country. AI/AN people with disabilities and advocates
must be invited to the table for key conversations regarding application
of disability policies, initiatives, and program development and
resource allocation. Unless and until this government-to-government
collaboration occurs, AI/AN people with disabilities will continue
to remain locked out of the protections and services guaranteed
to all Americans with disabilities.
Andrea Siow (Hopi Nation), a TEP member, stated, "By
getting the word out that people with disabilities are not helpless,
we can create awareness and improve things..It is up to us to find
our path.." Self-determination is a fundamental and important principle
not only for tribal governments, but for individual tribal members
with the human need for opportunity, inclusion, support, access,
and freedom to chart one's own course. This nation's mandate to
eliminate discrimination against individuals with disabilities has
thus far failed to appropriately address the inclusion of AI/AN
communities. For many people with disabilities in tribal communities,
the freedom to fulfill their dreams, access economic independence,
and meaningfully participate in their tribal community may rest
in the willingness of tribal, state, and federal governments to
work together. Stakeholders will need to work cooperatively and
effectively in ways that respect both the mandates and benefits
of ADA and other disability laws, as well as this nation's time-honored
moral and legal obligations to tribal governments.
SECTION III
Research Findings
Overview The
National Council on Disability (NCD) has made a major and continuing
commitment to identifying barriers to access, appropriate services,
and supports that differentially affect people with disabilities
from diverse cultures. This project reflects that commitment and
was intended to provide information and products for consumers and
to meet the goals set forth for the project. The project goals included
addressing key disability policy issues from a multiprogram, cross-agency
perspective; offering culturally competent information to tribal
communities based on representative input from tribal people with
disabilities and tribal leaders; and suggesting practical models
to support the empowerment of people with disabilities.
Despite representing a small percentage of the total
U.S. population, American Indians and Alaska Natives enjoy a unique
legal, historical, and political relationship with the Federal Government.
As indigenous peoples, Indian tribes engaged in government-to-government
relationships with other sovereign countries before the United States
was established.1 At its formation, the United States
recognized the unique relationship with Indian tribes, and this
recognition continues today. Meeting the needs of people with disabilities
living in Indian Country requires recognition of these unique relationships
and cultures and appropriate consultation with and input from tribal
leaders and communities to develop effective and useful service
approaches. The activities undertaken throughout this project sought
to obtain that necessary consultation and input through culturally
responsive and appropriate strategies. The result is information
presented in both a report and a Toolkit that form a foundation
for long-term development of policies and initiatives that can be
used to improve access to services and support for this population.
The stated objectives of this project were to
1. Summarize recommendations from relevant research
and reports on health, rehabilitation, and education issues that
impact independent living and self-determination realities for
people with disabilities living in Indian Country.
2. Provide scheduled involvement for representatives
of American Indian/Alaska Native (AI/AN) communities, advocates,
and key organizations concerned with issues of education, rehabilitation,
health, and independent living, as project advisors.
3. Identify and recommend basic factors/elements
and key processes that have been productive in getting sovereign
governments to develop tribal laws to protect and meet the service
needs of people with disabilities who live in Indian Country.
4. Provide a capacity-building toolkit that is user
friendly, incorporates principles of cultural competency, and
includes as examples for consideration what seems to be working/what
has been effective in different tribal settings.
5. Assess and recommend government-to-government
(state to sovereign tribal to U.S. government) improvements in
relationships needed for effective coordination across existing
federally funded projects/programs.
6. Plan to broadly disseminate the project materials
among Native people.
Method
This aggressive seven-month project inquired into
the needs and issues facing people with disabilities in AI/AN communities
as they affect education, health care, vocational rehabilitation,
and independent living. A review of relevant literature and research
findings was conducted. A 15-member Technical Expert Panel (TEP)
was identified2 and convened for three meetings at different
points of the project. The TEP proved to be a solid foundation for
this effort, providing ongoing advice and guidance. In addition,
a tribal and disability community consultant provided input during
the course of the project. Headquarters and regional federal officials
were identified and interviewed to discern their perspectives on
opportunities for and barriers to realizing improved government-to-government
relationships with sovereign tribal governments in meeting the service
needs of tribal members and descendants with disabilities. Finally,
throughout this report and the Toolkit, the term "Indian Country"
is used to indicate the federally recognized tribal lands across
the United States.
Technical Expert Panel
Individuals representing consumers and advocates within
the AI/AN disability community across the country were recommended
to serve as members of a national TEP. Tribal leaders were also
recruited for the TEP to serve as advisors, particularly in the
government-to-government discourse. Members of the TEP functioned
in project consultant and advisory roles throughout the course of
the research, providing guidance on the direction of the project.
The TEP was instrumental in providing input on plans, critical feedback,
direction, and redirection of issues this project addressed. In
addition, the TEP was utilized to identify sovereign tribal governments
to be interviewed as potential case studies.
Project Strategy
The project objectives and tasks were implemented
in three major phases. Phase I involved the gathering of preliminary
data and information. This phase culminated with the first gathering
of the multidisciplinary TEP in July 2002. Phase I also incorporated
timelines to organize the project, finalize work plans and schedules,
and receive initial project sanction from the TEP. Phase II efforts
centered on the collection of data, information, and input. This
phase represented the substantive bulk of work for this project.
It included finalizing the literature and research reviews, concluding
the key respondent interviews, concluding the case studies, and
concluding the consumer and tribal leader focus groups. Phase III
provided a final feedback loop for the content of the deliverables
through the TEP. Each of these three major phases required a strategy
that built upon the development of relationships within the AI/AN
communities, especially as the strategy relates to tribal members
and descendants with disabilities and communication with tribal
leadership.
Literature Review
The literature review and synthesis provided a foundation
of information for defining key issues and for the design and conduct
of the approach to the key respondent interviews and case studies.
In addition, the findings were shared with the TEP for review, discussion,
and suggestions for revision.
The approach to this task was designed broadly to
identify, obtain, and assess published and unpublished information
that provided insights into the nature of barriers to access to
services in Indian Country, and the factors that may be associated
with greater or lesser degrees of difficulties in obtaining supports
and services in Indian Country.
Based on the preliminary literature review conducted
as background for the initial project proposal, it was anticipated
that standard literature search techniques would produce sparse
data on barriers to access and on effective strategies for increasing
access to services for the population of interest. Consequently,
the supplementary activities included
- Search of Internet Web sites to identify organizations
that serve or advocate for people with disabilities who live in
Indian Country and to identify background papers, issue papers,
data sources, projects, and studies that have addressed the relevant
issues for this project.
- Telephone interviews with researchers who have
been involved in studies of AI/AN health issues, to identify past
and ongoing research projects and findings that may be relevant
to this study.
- Telephone interviews with Federal Government employees
in agencies that have responsibilities for health, education,
vocational rehabilitation, independent living, and other services
provided to people in Indian Country, to identify relevant data
sources, studies, and initiatives for this study.
- Search of national databases (e.g., National Health
Interview Survey, Medicare Current Beneficiary Survey, National
Medical Expenditure Survey, Current Population Survey, 1990 census,
and 2000 census) and publications of data summaries from these
surveys to obtain estimates of the number of people with disabilities
in Indian Country and prevalence of each type of disability.
The first step in the literature survey was to conduct
a search of published literature through standard literature sources,
including
- Medline
- MedlinePlus: AI/AN Health
- Native Health Research Database
- Native Health History Database
- Education Resources Information Center
- www.disabilityresources.org/Native
These sources enabled identification of relevant published
literature, from which a comprehensive bibliography was compiled
and organized according to key topic areas. Brief abstracts of each
publication were prepared from relevant and available full text.
References cited in each publication were also searched to identify
additional relevant literature.
Once the published literature bibliography was compiled,
the search was expanded to Web sites of national Indian organizations
concerned with health and social service issues, as well as organizations
specifically focused on serving and advocating on behalf of AI/AN
people with disabilities. These organizations included
- National Council of American Indians
- National Indian Health Board
- National Indian Council on Aging
- Association of American Indian Physicians
- American Indian Rehabilitation Research and Training
Center (AIRRTC)
- National Center for American Indian and Alaska
Native Mental Health Research, University of Colorado Health Sciences
Center
- The Native Elder Health Care Resource Center,
University of Colorado Health Sciences Center
- Rural Institute on Disabilities and American Indian
Disability Technical Assistance Center (AIDTAC), University of
Montana
- Native American Research & Training Center, University
of Arizona
- Vocational Rehabilitation Service Projects for
American Indians with Disabilities (Rehabilitation Services Administration
Programs)
In addition, a search3 of relevant Federal
Government Web sites included
- Indian Health Service (IHS)
- Administration for Native Americans
- Administration on Aging
- Department of Education
- Department of Labor
- National Institutes of Health, including National
Institute on Aging, National Institute on Alcohol Abuse and Alcoholism,
National Institute of Mental Health, National Institute on Deafness
and Communication Disorders, National Institute of Diabetes and
Digestive and Kidney Diseases, and National Institute on Drug
Abuse
- Centers for Medicare and Medicaid Services
- Agency for Healthcare Research and Quality
After all the literature and interview results were
synthesized by topic area with key findings highlighted, each topic
area was then reviewed for completeness and gaps in information
and research. The questions to be addressed in this review included
the following:
1. What do we know with reasonable certainty, based
on valid and reliable research?
2. What do the research findings suggest, for which
supporting evidence is weaker?
3. What important issues, in this area, have not
been addressed by any research?
4. What are the reasons that these issues have not
been addressed (e.g., lack of appropriate data)?
The review includes a summary of findings from the
literature, identification of gaps in the research and findings,
and suggestions that could address these gaps in information and
research.
Definition and Description of the American Indian
and Alaska Native Population Living in Indian Country Overall, People
with Disabilities, and Types of Disabilities
According to the 2000 U.S. Census, nearly 2.5 million
Americans, or 0.9 percent of the U.S. population, identified themselves
as American Indians or Alaska Natives. Approximately 4.1 million
people or 1.5 percent of the U.S. population identified themselves
as AI/AN or AI/AN in combination with another race. Of the people
who indicated that they were AI/AN in combination with another race,
the majority (66 percent) identified the other race as "White."
In 1990, the population of AI/AN was approximated
at 1.9 million.4 Although comparison of the 1990 and
2000 census data suggests a 10-year increase in the AI/AN population,
the actual magnitude of this increase is unclear because of changes
in how the census collects and reports information on race. Specifically,
the 1990 census required people to affiliate with only one racial
group, and the 2000 census allowed people to identify with multiple
racial groups. Comparison of the 1990 AI/AN population estimates
to the population who indicated that they were AI/AN in 2000 shows
a rate of increase of 26 percent. However, comparison to the total
number of people who identify their race as AI/AN only or AI/AN
in combination with other races shows a 10-year increase of 110
percent. In contrast, the population of the rest of the United States
(all races) increased by only 13 percent during that same period
(U.S. Census, 2000).
Population Off and On the Reservation
Although American Indians and Alaska Natives reside
in all states of the United States, approximately 42 percent of
the AI/AN population (one race only) living both on and off reservations
are located in four states: Arizona, California, New Mexico, and
Oklahoma.5 Nearly one-half of the AI/AN population reside
in the Western United States, compared with 30 percent who reside
in the South, 16 percent who reside in the Midwest, and less than
7 percent who reside in the Northeast.
Defining Indian Country: The
Census Bureau distinguishes several types of tribal lands. Federally
recognized reservations and off-reservation trust lands are those
geographic areas to which the Federal Government has granted sovereignty
and whose tribal members are eligible to receive services from the
U.S. Department of the Interior's Bureau of Indian Affairs (BIA).
Indian tribes with or without a land base may also be recognized
by individual states but not by the U.S. Department of the Interior.
In the latter case, the census considered tribal members to be residing
in a state-designated American Indian statistical area. In some
cases, an American Indian population that resides within a geographic
area may function as an organized tribe but not be recognized by
either the state or the Federal Government. These distinctions across
American Indian lands are important in understanding barriers to
access to health and social services that people with disabilities
face, because it is only on federally recognized tribal lands that
the tribal jurisdiction is granted sovereignty. As such, it is only
on federally recognized reservations where the benefits afforded
to people with disabilities through the Americans with Disabilities
Act (ADA) are not consistently ensured. The matter of this exemption
is discussed later in this report.
Approximately 944,433 people resided on federal reservation
and off-reservation trust land in 2000. States with the largest
population on federally recognized reservations are Arizona, New
Mexico, and Washington. These three states are home to nearly one-half
of the U.S. populations who live on federal reservations. It is
important to note that the number of American Indians and Alaska
Natives that are currently living on or near reservations is expected
to be somewhat less since these figures include people of all races
and ethnicities.6 In fact, less than one-third of people
who identified themselves as AI/AN in the census and one-fifth of
people who identified themselves as either AI/AN or AI/AN in combination
with another race resided on a federally recognized reservation
in 2000.7
BIA officially recognizes over 560 tribes. The 10
largest tribal groupings in the United States are the Cherokee,
Navajo, Latin American Indian, Choctaw, Sioux, Chippewa, Apache,
Blackfeet, Iroquois, and Pueblo. Two-thirds of all people who specified
a tribal affiliation on the 2000 census identified themselves as
Cherokee either in whole or in combination with another tribal group.
One-fourth self-identified with the Navajo Tribe. Among Alaska Natives,
the largest tribal group is the Eskimo.8
Disability Prevalence Among American Indians and Alaska
Natives
It is important to note that statistics vary, depending
on the source of data and the definition of disability. The numbers
also vary according to the type and severity of the disabilities
included. There continue to be problems with widely used disability
employment and other data in U.S. Census 2000, including concern
about the inadequate collection and analysis of relevant and reliable
statistical data on America's population with disabilities.
NCD recognizes that findings of the 2000 census, together
with those of other compilations relating to the employment status
of Americans with disabilities, are being severely questioned on
methodological and validity grounds. The accuracy of this data is
critically important in an era of evidence-based policy because
misleading information can lead to misguided or premature public
policy decisions.
Data from the 1997 Survey of Income and Program Participation
(SIPP) indicates that nearly 20 percent of the U.S. population has
some level of disability. Twelve percent of the population had a
developmental or other disability of sufficient severity to require
the use of a wheelchair, cane, or crutches and to prevent them from
working, or for which they required assistance in performing activities
of daily living or instrumental activities of daily living.9
The prevalence of disabilities has been found to vary significantly
by racial and ethnic group. In 1991-1992, nearly 20 percent of Whites
and Blacks were estimated to have a disability (defined as the presence
of one or more functional limitations) compared with 15 percent
of Hispanics and 10 percent of Asian and Pacific Islanders. According
to the SIPP, rates of disability were highest among American Indians
and Alaska Natives; nearly 22 percent of American Indians, Eskimos,
and Aleuts were estimated to have a disability. Rates of disability
were even higher among the working age population. Nearly 27 percent
of American Indians and Alaska Natives between the ages of 16 and
64 were estimated to have a disability in 1991-1992.10
The state-specific estimates from 1990 U.S. Census
data on American Indians and Alaska Natives (living both on and
off reservations) with a disability reveal that rates of disability
vary substantially across states. With few exceptions, rates of
disabilities in the AI/AN population tend to be higher in southern
states compared with rates in Arizona, New Mexico, and Utah. Among
working age AI/AN adults (ages 16 to 64), rates of disability range
from a high of over 25 percent in the states of Kentucky, Mississippi,
and West Virginia to a low of approximately 12 percent in the states
of Alaska, North Dakota, and Wyoming. Rates of disability also vary
significantly among the elderly AI/AN population, from a low of
16 percent in Wyoming to a high of nearly 41 percent in Mississippi.
Reservation-specific estimates of disability, for
reservations with more than 5,000 persons, are also provided in
the 2000 census for the states of California, Arizona, Washington,
New Mexico, Montana, and South Dakota. These estimates are based
upon a sample of the population. Estimates may therefore be unreliable
because of the small number of American Indians and Alaska Natives
from any reservation included in the samples. Nevertheless, this
data may suggest trends in the prevalence of disability across tribal
groups that should be further investigated.
There is a three-fold difference in the proportions
of children with disabilities residing in these reservations sampled
in the six states listed in the previous paragraph. Approximately
3.4 percent of children living on the Hopi Reservation in Arizona
are estimated to have a disability compared with over 10 percent
of children in the Tohono O'odham Reservation in Arizona. Rates
of disability were not only higher among adults but also varied
widely, from a low of 13.5 percent in the Port Madison (WA) Reservation
to a high of over 37 percent in the Fort Apache (AZ) and Salt River
(AZ) Reservations. Estimated rates of disability among senior citizens
living on reservations are, in many cases, dramatically high. Nearly
three-quarters of residents over the age of 65 in the Fort Apache
(AZ), Gila River (AZ), Hopi (AZ), Navajo (AZ), and Zuni (NM) reservations
are estimated to have a disability.
The extent to which variation in disabilities across
reservations is attributable to difference in the proportion of
American Indians (as opposed to people of other racial groups) who
are living on these reservations is unclear.
Types of Disabilities
Information on the types of disabling conditions that
are most prevalent on Indian reservations is limited to a small
number of studies that either have surveyed organizations serving
American Indians and Alaska Natives (e.g., tribal representatives,
independent living centers) or have analyzed administrative data.
In 1994 the American Indian Disability Legislation Project conducted
a survey of 143 AI/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. The disabilities
most frequently cited by 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.11
Clay (1992) conducted a survey of independent living
centers (ILCs) to identify the services that are available to American
Indians residing on reservations. According to 42 ILCs that indicated
that they served people on reservations or tribal lands, the most
frequently observed disabilities among American Indians living on
reservations were spinal cord injury, diabetes, blindness, mobility
disability, traumatic brain injury, deafness, hardness of hearing,
orthopedic conditions, and arthralgia. Rates of each of these disabilities
were not provided.12
AIRRTC also examined the prevalence of different types
of disabilities among American Indians using data from administrative
files maintained by the U.S. Department of Education's Rehabilitation
Services Administration (RSA). Since the RSA files contain information
on people who have undergone rehabilitation, estimates of the prevalence
of disabling conditions may not be representative of the AI/AN population;
rather, estimates of disabling conditions derived from this data
are likely to reflect the characteristics of people who utilized
these services. Nonetheless, this data is useful for purposes of
comparing the prevalence of disabling conditions among AI/ANs to
that of other racial groups.
AIRRTC analyses found that alcohol abuse or dependence
was the most common cause of disability among American Indians and
Alaska Natives 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. The frequency of
sensory disabilities, however, tended to be slightly lower among
American Indians and Alaska Natives than other racial groups. Among
AI/AN clients, 1 percent were blind/low vision and 0.8 percent were
deaf/hard of hearing compared with 1.9 percent and 1.24 percent,
respectively, of the total in the RSA database.13
Unique Legal, Environmental, and Economic Factors
Affecting Provision of and Access to Appropriate Services for People
with Disabilities in Indian Country
Compared with other U.S. citizens, American Indians
and Alaska Natives living in Indian Country have a unique legal
status that affects the protections and services available to people
with disabilities living on these lands. The definition of Indian
Country is derived from 18 U.S.C. Subsection 1151. Although Subsection
1151 is in the criminal code, this section has been applied in civil
cases as well. Subsection 1151 provides that "Indian Country" means
(a) all land within the limits of any Indian reservation
under the jurisdiction of the United States Government, notwithstanding
the issuance of any patent, and, including rights-of-way running
through the reservation, (b) all dependent Indian communities
within the borders of the United States whether within the original
or subsequently acquired territory thereof, and whether within
or without the limits of a state, and (c) all Indian allotments,
the Indian titles to which have not been extinguished, including
rights-of-way running through the same.14
Indian Country, in both civil and criminal matters,
is subject to the jurisdiction of tribal governments.15
In addition to the unique legal status of AI/AN residents,
Indian Country is disproportionately rural or frontier. This poses
a number of logistical and resource challenges to provision of and
access to social, health, and support services. Historically, American
Indians and Alaska Natives tend to have less education, less employment,
and lower incomes than other people in the United States and, thus,
tend to have fewer resources to address the needs of people with
disabilities.
Environmental Factors
Most of Indian Country is located in rural and frontier
areas in the United States, and American Indians and Alaska Natives
are more likely than any other racial group to reside in nonmetropolitan
areas.16 While the challenges of providing services to
people with disabilities in rural/frontier areas are not unique
to American Indians and Alaska Natives, the substantial majority
of people with disabilities in Indian Country are located in rural/frontier
areas. People living in rural areas generally experience barriers
to accessing health care and other social services; people with
disabilities in rural areas face even greater barriers in obtaining
the complex medical and related services that they require.17
Barriers to health care access and other services
in rural areas include lack of resources, long travel distances,
and lack of transportation. In addition, people from diverse cultures
in rural areas often experience cultural and language barriers to
obtaining appropriate health care. They seldom encounter health
care and other service providers of the same cultural backgrounds
or who have been educated to provide services in a culturally appropriate
manner.18
NCD has identified a number of challenges in obtaining
necessary services faced by people with disabilities from diverse
cultures and by people with disabilities in rural areas, including
lack of resources and lack of education and training on policy,
cultural issues, services, and attitudes.19 Thus, American
Indians and Alaska Natives with disabilities residing in rural Indian
Country are dually challenged in their efforts to obtain appropriate
services and support.
Economic Factors
American Indians and Alaska Natives, particularly
those living in Indian Country, face significant economic challenges.
National data shows that in 1990, 78 percent of Whites had completed
high school and 22 percent had completed a college degree; AI/AN
rates compared at 65 percent and 9 percent, respectively.20
Lower educational levels are associated with reduced income potential,
and AI/AN household and family income levels in 1989 were approximately
60 percent of White household and family income.
People who live in Indian Country are more likely
than all American Indians and Alaska Natives to be very poor and
unemployed. BIA data indicates that in 1999, approximately 50 percent
of American Indians and Alaska Natives who were members of a federally
recognized tribe living on tribal lands were either unemployed or
employed with household incomes below the federal poverty levels.21
Poverty, unemployment, low levels of education, inadequate
housing and sanitation, and inadequate funding for federal health
and other programs responsible for providing services to American
Indians and Alaska Natives in Indian Country are all current problems
in Indian Country. These problems contribute to the poor health
status of American Indians and Alaska Natives. These problems also
contribute to a lack of services to meet health care and social
service needs of all people residing in Indian Country, particularly
those people with disabilities.
Understanding Government-to-Government Relationships
Despite representing a small percentage of the total
U.S. population, American Indians and Alaska Natives enjoy a unique
legal, historical, and political relationship with the Federal Government.
As indigenous peoples, Indian tribes engaged in government-to-government
relationships with other sovereign countries before the United States
was established.22 At its formation, the United States
recognized the unique relationship with Indian tribes, and this
recognition continues today. The Federal Government recognizes tribes
as "domestic dependant nations."23
To further this government-to-government relationship,
in 2000, the Federal Government announced a policy of consultation
with tribal governments in Executive Order #13175.24
The Executive Order 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 consult with tribes when developing federal standards.
They must also encourage tribes to formulate and implement their
own policies and establish standards. This Executive Order was reconfirmed
recently by the Honorable Alberto R. Gonzales, Counsel to the President,
in a letter to Congressman Frank Pallone dated June 25, 2002.25
Subsequently, Congressman Frank Pallone issued a letter to advocates
of Indian Country quoting Mr. Gonzales and stating his own commitment
to Executive Order #13175.26
Legal Factors
Individuals with disabilities living in Indian Country
face a complex legal environment. Long recognized as distinct political
entities,27 Indian tribes enjoy the "inherent powers
of a limited sovereignty which has never been extinguished."28
Indian tribes are protected from private lawsuits under the doctrine
of sovereign immunity.29 As a result of tribal sovereign
immunity to suit, not all federal regulations that apply in Indian
Country are enforceable by private parties against tribes.
A tribe is subject to suit by a private party under
these laws only when the tribe has expressly waived its sovereign
immunity. Thus, individuals with disabilities concerned about their
rights and protections guaranteed under the Rehabilitation Act or
ADA may face unique barriers when seeking enforcement by a tribal
government. Recent decisions in the Eleventh Circuit suggest that
while tribes are not specifically excluded from the provisions/requirements
and protections of the Rehabilitation Act of 197330 and
the Americans with Disabilities Act of 1992,31 enforcement
may be limited.32
Title I of the Americans with Disabilities Act
and Tribes
In passing ADA, Congress announced the purpose as
providing "a clear and comprehensive national mandate for the elimination
of discrimination against individuals with disabilities."33
Title I of ADA requires that employers with 15 or more employees
provide qualified individuals who have a disability with an equal
opportunity to benefit from the full range of employment benefits
available to others. Title I also restricts discrimination in hiring,
promotions, pay, and other privileges of employment. Employers must
make reasonable accommodation for the known physical or mental disability
of otherwise qualified individuals with disabilities, unless it
results in an undue hardship. While Title I categorically excludes
tribal governments as employers under this title, ADA does not exclude
qualifying private employers operating in Indian Country.34
Title II of the Americans with Disabilities Act
ADA did not include an explicit exemption for tribal
governments under Title II as it did in Title I. On June 22, 1999,
the Supreme Court decided a landmark ruling interpreting Title II.
In Olmstead v. L.C., the Supreme Court held 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.35 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 ruling could present new opportunities
for tribal governments to develop home- and community-based services
that are reimbursed by Medicaid or other sources.
Title III of the Americans with Disabilities Act
and Tribes
Title III of ADA prohibits discrimination in public
accommodations. A case involving public accommodations for people
with disabilities at a tribal facility provides some insight. On
the basis of Congress' intent to end discrimination and the statute's
broad language, the Eleventh Circuit has ruled that Title III of
ADA does apply to tribes.36
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.37 While Title III of ADA may apply
to tribes, the Eleventh
Circuit found that the sovereign immunity of tribal
governments prohibits private suits for enforcement against tribes
in federal courts. In such cases, individuals with disabilities
may have a right without a remedy.
Title III does provide for suits brought for enforcement
by the U.S. Department of Justice.38 While this possibility
exists, no such action has been brought by the Department of Justice
to date. It is also important to note that this ruling of the Eleventh
Circuit was not taken to the U.S. Supreme Court.
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 RSA
to make grants to tribes for the purpose of vocational rehabilitation
(VR) 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, which protects
tribes from suit in federal court.39
The Individuals with Disabilities Education Act
and Tribes
The purpose of the Individuals with Disabilities Education
Act (IDEA) is to ensure that every child has available a free, appropriate
public education that meets individual needs.40 IDEA
intends to improve the educational results of children with disabilities.
To reach this goal, IDEA requires (1) an Individualized Family Service
Plan (IFSP) for infants and toddlers with developmental delays,
and (2) an Individualized Education Program (IEP), developed by
the IFSP or IEP team, which includes parents and others as decisionmakers,
for each eligible child of school age with a disability.
To assist in meeting needs of children and families
in Indian Country and in Department of the Interior-funded schools,
IDEA provides a set-aside or percentage of funds from the U.S. Secretary
of Education to the Secretary of the Department of the Interior.
IDEA funds for infants and toddlers (ages 0-3) are provided directly
to tribes by the Department of the Interior. Until the late 1990s,
the tribes were not contacted directly by the Department of Education
and asked to account for how needs were met for children with disabilities
and their families. While IDEA calls for states to provide services
to all children of preschool age eligible under IDEA, many children
ages 3 to 5 in Indian Country face difficulty in receiving any support
from state agencies. Thus, many children often fall through the
cracks until they are five years old and can be served by either
public or BIA-funded schools.
IDEA provides that the Secretary of the Department
of the Interior receive funds from the Secretary of Education to
educate children ages 5 to 21 with disabilities on reservations
in elementary and secondary schools operated and funded by the Secretary
of the Interior.41 The IDEA also provides an administrative
enforcement process that the BIA-funded schools are subject to,
based upon their status as a local educational agency.42
However, IDEA does not waive tribal sovereign immunity because the
federal law does not contain the explicit, unequivocal waiver that
is necessary. While the U.S. Department of Education has the authority
to withhold federal funding when the BIA-funded schools have been
out of compliance in meeting children's needs and in protecting
families under IDEA, as well as in failing to improve physical accessibility
of BIA facilities, this sanction has not been applied. The investigation
for this NCD project revealed concern at the local level regarding
adequate federal funding to ensure the BIA's ability to meet its
mandates under IDEA. Advocacy by parents and other groups is critical
to protect the rights of Indian children with disabilities, whether
in BIA-funded or public schools.
Advocacy Options
The outcomes above may suggest that along with states
where tribal lands are located, some tribal governments are failing
to meet their responsibility to individuals with disabilities. For
many tribes, current funds may be inadequate to address all of the
needs of people with disabilities, including improving accessibility
in Indian Country. Although, entangled in this complex legal environment,
individuals with disabilities living in Indian Country have potential
options. A tribe could waive its sovereign immunity to allow suits
brought under ADA in federal courts. A more likely scenario might
be an increase in the number of tribal governments passing ordinances
providing protections similar to those in federal statutes, such
as ADA or the Rehabilitation Act. A tribe could thus provide a legal
remedy within the existing tribal legal system through a limited
waiver of sovereign immunity. Tribal governments have the inherent
authority to pass laws, develop programs, and ensure protection
and accessibility for people with disabilities under their jurisdiction.
A recent survey conducted by the American Disability Legislation
Project found that "schools, stores, churches, Bureau of Indian
Affairs and other federal buildings, and tribal courts and jail
facilities were accessible about two-thirds of the time" (p. 2).
Other major tribal facilities, such as health centers and senior
citizen buildings, were found to be accessible about 75 percent
of the time. Similarly, most major services for people with disabilities
were accessible about 71 percent of the time.43 However,
this report also notes that only 13 percent of tribes had a line
item in their budget for disability issues. The political power
of people with disabilities, their families, and advocates could
help to move tribal governments toward adopting such ordinances.
The doctrine of tribal sovereign immunity from suit
in federal court does not necessarily support the proposition that
the requirements of ADA are inapplicable to tribal governments in
all circumstances. In drafting ADA, Congress makes it clear that
the act is a "national mandate" to end discrimination. Furthermore,
the Act and other comparable legislation suggest that Indian tribes
should be the recipients of grants to ensure compliance. If tribes
are to meet these federal requirements, increased funds are necessary.
Currently, a policy paradox exists in which AI/AN people with disabilities,
caught between the doctrine of tribal sovereign immunity and a national
policy to end discrimination, suffer the consequences.
Despite the legal challenges for enforcement of ADA
and related legislation in Indian Country, American Indians and
Alaska Natives have a unique relationship with the Federal Government
that promises federally provided health, education, and social services.
To uphold this promise, the Federal Government could provide appropriate
services and support for people with disabilities in Indian Country.
Pursuant to trust responsibility of the Federal Government to Indian
tribes, federal agencies are responsible for carrying out these
guarantees. However, funding for these programs has been inadequate
to effectively address the needs of people with disabilities in
Indian Country.
In addition, the complex and conflicting structure
of federal responsibilities for services provided to American Indians
and Alaska Natives results in jurisdictional conflicts, both intra-agency
and inter-agency. Such conflicts may lead to a lack of accountability
and inadequate or no services provided to people with disabilities
in Indian Country. For example, 10 years ago a National Indian Justice
Center report suggested that the Department of Education assign
to BIA exclusive responsibility for Indian children on reservations
that have BIA schools. However, in light of the fact that the overwhelming
majority of AI/AN children are educated in public schools, BIA believed
it was responsible only for those children enrolled in its programs.44
The authors of the report also note that multiple organizations
with roles in developing and delivering services to American Indians
and Alaska Natives with disabilities have led to "interagency competition
and conflict, jurisdictional confusion, and 'passing the buck'."45
Barriers to Provision of and Access to Appropriate
Services for People with Disabilities in Indian Country
"People have ideas about disabilities but they
don't know what it's like. They might want to hold you back. I
still have all the mechanical knowledge from running heavy equipment
but just because I can't do that anymore, I can still do things
like change the transmission on my car by myself."
-Joseph Garcia, Prairie
Band of Potawatomi
General Barriers In this
section, general barriers common to people from diverse cultures
and rural people with disabilities are discussed. Then specific
barriers that are unique to people with disabilities in Indian Country
are described.
While all people with disabilities may face a myriad
of challenges in obtaining appropriate services to enable them to
function effectively and productively, people who are members of
diverse racial and ethnic populations and people with disabilities
in rural areas may encounter even greater barriers to necessary
supportive services and accommodation than do other people with
disabilities. Recognizing the significant difficulties that may
face people from diverse cultures who have disabilities and their
unique needs, NCD developed a key initiative to address these needs.46
NCD has continued from 1993 to the present to focus
attention on the need for special efforts to ensure that people
with disabilities from diverse cultures are able to obtain necessary
appropriate services and support. In the 1997 Roundtable Report
of Findings, NCD noted that "there was consensus that the needs
of [people] with disabilities and from [diverse cultures] and people
with disabilities living in rural communities warrant ongoing corrective
attention in all aspects of the fabric of American public policy"
(NCD Roundtable Report, p. 2). In 1999, NCD summarized findings
and recommendations for addressing barriers to access to services
and support for people with disabilities from diverse cultures and
their families.47
General barriers to access to necessary and appropriate
services identified through the NCD meetings on consumers and advocates
included
- Persistent lack of access to appropriate job training
and employment opportunities
- Persistent lack of childcare and afterschool programs
- Greater difficulty gaining access to public accommodations
(e.g., markets, restaurants) due to lesser compliance with ADA
access mandates
- Greater difficulty gaining access to public transportation
and greater unwillingness of public transportation personnel to
accommodate people with disabilities who are also from diverse
cultures
- Lack of culturally competent and culturally
appropriate service delivery, including
- lack of people from diverse cultures in the
disability service professions, particularly in rural areas
- inadequate culturally appropriate outreach
to ensure that people are aware of services and resources
that are available to them
- lack of bilingual speakers, interpreters,
and language-appropriate communications materials
The digital divide or limited information technology
infrastructure in rural areas poses another barrier to independent
living for American Indians and Alaska Natives with disabilities.
For instance, approximately 24 percent of AI/AN households do not
have telephones. Less than 30 percent of AI/AN households are equipped
with a computer and less than 20 percent have Internet access.48
In addition to these general barriers to access that are encountered
by people with disabilities from diverse cultures, people in rural
areas with disabilities also face additional barriers, including
long distances to obtain services, lack of transportation and appropriate
accommodation to travel to services, greater difficulty obtaining
assistive technology or specialized equipment due to lack of commercial
establishments with sufficient market demand, and lesser awareness
of and/or lack of resources to provide accommodation to facilitate
access to services in rural areas.
People with disabilities in Indian Country encounter
these general barriers in common with other people from diverse
cultures and rural people with disabilities. Since many tribal lands
are in remote rural and frontier areas, the barriers that tribal
members face may be more extreme on average than those faced by
rural people with disabilities generally. Similarly, because the
AI/AN population in Indian Country is less than 0.5 percent of the
U.S. population, the lack of AI/AN disability service providers
is likely to be more severe than for other culturally diverse populations.
In addition, for people in Indian Country who speak a native language,
appropriate interpreters and language-appropriate communications
materials are even less likely to be available.
Over and above these general barriers to access to
services, people with disabilities in Indian Country also face a
number of additional uniquely difficult and challenging barriers.
Unique Barriers
People with disabilities in Indian Country reside
in areas that pose special issues for obtaining access to services
and accommodation to facilitate their full participation in society.
These unique aspects of tribal lands include the following:
- Legislation mandating rights for people with disabilities
is not automatically enforceable in Indian Country.
- Tribal leaders and communities lack awareness
and adequate knowledge of programs to meet the needs of people
with disabilities in Indian Country.
- A number of federal agencies have interrelated
and conflicting responsibilities for provision of health, education,
and social services in Indian Country that result in failure and
lack of accountability to meet the needs of people with disabilities.
- Chronic underfunding of federal programs serving
people in Indian Country results in inadequate and rationed services
that do not meet the needs of all people in Indian Country, including
those of people with disabilities.
- Indian Country, for the most part, is composed
of small, isolated populations with limited resources and capabilities
to develop and implement programs and accommodations for people
with disabilities.
- Tribes are distinct groups, with different cultures,
languages, and resources, and would likely require unique approaches
to inform and facilitate changes to meet the needs of people with
disabilities in Indian Country.
Disability Legislation in Indian Country
People with disabilities living in Indian Country
may not be afforded the benefits and protections of ADA and other
legislation affecting rights and services. Because of the unique
relationship between tribal governments and the U.S. government,
legislation that does not specifically address Indian tribes is
generally assumed not to apply to tribal areas. For ADA (and other
similar legislation) to apply to tribal lands, the Federal Government
likely would need to conduct separate negotiations with each of
the more than 500 federally recognized tribes.49 A recent
decision in the Eleventh Circuit Court suggests that while tribes
are not specifically excluded, there is limited enforcement for
ADA compliance. Like federal and state governments, tribes enjoy
sovereign immunity from being sued unless the tribe allows for suit
or Congress explicitly provides for suits. Thus, enforcement of
ADA in Indian Country would require that the Federal Government
bring suit against the tribes or that Congress take explicit action
to include tribes within the scope of ADA.
In the absence of legislative action or conduct of
separate negotiations between the Federal Government and tribal
governments, individuals with disabilities in Indian Country are
limited to negotiation and political efforts to persuade tribal
governments to adopt policies to ensure rights and provide accommodations.
A 1995 survey conducted by the American Disability
Legislation Project found that at least one tribe has chosen to
adopt ADA as a whole through tribal resolution and is now sorting
out what this means for its members. In addition, AIDLP reported
that several tribes had passed resolutions that deal with employment
of people with disabilities, one tribe had created an Office of
Special Education to ensure that tribal children with disabilities
would have their educational needs met, and other tribes had taken
steps to begin addressing issues for meeting the needs of people
with disabilities. At the same time, the AIDLP survey revealed that
only 13 percent of responding tribes had at least one line item
in their budget related to disability services; however, the average
amount per tribe for these line items was very small (e.g., an average
amount of $5,033 for staff training on disability issues and $12,500
for employment services for people with disabilities).
Lack of Awareness/Adequate Knowledge
The AIDLP survey of American Indian tribes indicated
that only 37 percent of respondents reported that their tribe was
familiar with ADA, the relevant sections of the Rehabilitation Act,
or IDEA. Only 6 percent indicated that their tribal governments
were very familiar with major disability legislation. None of the
Alaska Native respondents stated that their tribal governments were
very familiar with major disability legislation. Of American Indian
respondents, 74 percent said that they believed that their tribal
government would be interested in participating as a focus group
for establishing disability legislation within their tribe (NCD
Roundtable Report, p. 23).50 Most respondents to the
survey indicated that it was very important that tribal members
with disabilities be treated with respect.
Complex and Interrelated Federal Agency Responsibilities
A wide variety of federal agencies have some level
of responsibility for providing services for people with disabilities
in Indian Country. However, it has never been clearly delineated
which agencies are specifically accountable for providing specific
services. As a result, many services may be provided on a piecemeal
basis or not at all, even when there are clear federal responsibilities
under law and treaty agreements. The U.S. Department of Health and
Human Services' (HHS) IHS, the U.S. Department of the Interior's
BIA, and the U.S. Department of Education's Office of Special Education
Programs and RSA all have some role in developing and delivering
services to AI/AN people with disabilities in Indian Country. However,
a 1991 report states, "There are disagreements about who is primarily
responsible for providing services to Indian children with disabilities."51
The authors go on to note that "'jurisdictional confusion and 'passing
the buck'.have impeded delivery of services to people with disabilities.
This lack of coordination needs to be remedied at federal and state
levels to ensure efficient delivery of services.."52
This same study notes that American Indian children received special
education from a variety of sources including BIA, Head Start, IHS,
and local public school districts. However, less than 30 percent
of those in need of special education services received some services
and, of those, about one quarter received fewer services than prescribed
by their IEP.
Inadequate Funding of Federal Agencies with Responsibilities
for Providing Services to People with Disabilities on Tribal Lands
Members of federally recognized tribes have access
to health services through the federal IHS that provides services
to all eligible tribal members. Similarly, BIA is responsible for
providing a variety of services that address the needs of people
with disabilities (e.g., education and services to school-age children
with disabilities). However, chronic underfunding of AI/AN programs
by the Federal Government has severely lessened the ability of these
federal agencies to meet the needs of the AI/AN population.
Funding of Education Programs. Funding for
special education programs for AI/AN children with disabilities
is provided from a variety of sources from the U.S. Department of
the Interior's BIA, U.S. Department of Education, and state education
departments, depending on the type of school attended. Ninety percent
of AI/AN children attend publicly funded schools and 10 percent
attend BIA-funded schools, which are run by BIA, contractors, or
tribes.
Responsibilities for providing special education and
related services to AI/AN children ages 5 to 21 with disabilities
reside with the school district in which they are enrolled. Since
90 percent of AI/AN children attend public schools, state and local
governments are responsible for funding special education and related
services for the vast majority of Indian children with disabilities.
All BIA-funded schools that use IDEA allocations from the U.S. Department
of Education, whether managed by BIA or tribes, are responsible
for carrying out the IDEA requirements by providing special education
and related services to eligible children with disabilities who
may be among the remaining 10 percent of AI/AN children who attend
BIA-funded schools. BIA reports that school administrators believe
that funding for staff is still a factor that presents a challenge
to fully meeting the requirements.53
Funding for Health Programs. IHS estimates
that the funding it receives to care for eligible AI/AN people is
only about 50 percent of actual need. On a per capita basis, IHS
funding has declined by nearly 20 percent since 1987.54
Total U.S. per capita spending for health care was $3,619 in 1998,
compared with IHS funding of $1,186 per capita for American Indians
who live on or near reservations and use IHS facilities. Total estimated
per capita expenditures, paid through all sources of financing including
out-of-pocket costs, for the American Indian population were about
58 percent of average U.S. per capita expenditures. For people who
reside in Indian Country, however, it is likely that IHS-funded
health services constitute the primary or only source of health
care available. IHS reports that authorization for referrals to
contract health services (i.e., services purchased outside the IHS
because the needed services are not available directly from IHS)
is currently limited to "emergent, saving of life and limb" due
to limited funding.55
IHS direct service or tribally managed health programs
may augment financial resources through Medicaid, Medicare, or State
Children's Health Insurance Program reimbursement for services provided
to patients who are enrolled in these programs. However, there are
many barriers to enrollment in these programs and not all IHS or
tribally managed health programs have the information system capabilities
or third-party reimbursement experience to effectively obtain the
reimbursements that they may be eligible to receive.
While health care is only one component of the services
and support needed by people with disabilities living in Indian
Country, the relative poor health status and the underfunding of
the IHS reflects the general lack of financial resources directed
by the Federal Government to meet health, education, vocational
rehabilitation, independent living, and other service needs of all
people living in Indian Country. People who have disabilities and
need appropriate services to permit them to participate fully in
society face grave barriers to obtaining these services and support
in an environment where the available resources are vastly inadequate
to meet basic needs of all tribal members.
Funding for Vocational Rehabilitation, Independent
Living, and Assistive Technology Services. Federal funding for
VR and independent living services is stipulated in the provisions
of the Rehabilitation Act of 1973 as amended. Title I, Part C, Section
121 of the Rehabilitation Act establishes competitive grants for
the provision of VR services to American Indians with disabilities.
Indian tribes located on federal and state reservations are eligible
to compete and receive grants under the American Indian Vocational
Rehabilitation Services (AIVRS) program. Programs approved under
Section 121 may be funded for a period of five years and must provide
services that are comparable to those provided by state VR programs.
The federal share of costs is equal to 90 percent of the costs of
VR services; the remaining 10 percent, or the nonfederal share (which
may be waived), may be rendered in cash or in kind. The 1998 amendments
to the Rehabilitation Act set a reserve for programs funded through
Section 121 at an amount greater than 1 percent and no more than
1.5 percent of federal appropriations for state VR grants. Currently,
among the more than 560 federally recognized tribes, a limited number
of 121 grants have been made available. Only 69 programs are in
operation and among this small number, two receive no federal funds
for their programs, but the tribes still work to meet needs of people
with disabilities. The tribes funding their own programs are Sycuan
(which is a consortia) in California and the Eastern Band of Cherokee
in Cherokee, North Carolina.56
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 independent living centers, 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; however, according
to Lansing and Yazzie-King,57 the success of tribal governments
in obtaining funding for independent living services through this
mechanism may be limited because "tribes must compete for these
grants with the majority society, where greater knowledge of the
independent living philosophy, the independent living movement,
and federal requirements is already in place." Currently, only one
ILC grant has provided a place for service on tribal land anywhere
in the United States. Grants are administered through the U.S. Department
of Education's RSA.
The Assistive Technology Act of 1998 provides funds
through state assistive technology (AT) programs. There are 56 such
federally funded programs, including one in every state, commonwealth,
and territory of the United States.58 Funds may be used,
in part, to improve access to assistive technology, to increase
consumer awareness of technology, and to develop alternative financing
mechanisms, such as loan programs, for consumers to purchase assistive
technology. Information on the extent to which these state programs
meet the AT needs of American Indians with disabilities is unknown.
IHS provides access to only a relatively narrow set
of AT devices (e.g., hearing aids, eyeglasses). Funding for assistive
technology necessary for independent living must generally be obtained
from various other sources. Assistive technology may be covered
under Medicare, if the required services fall within the Centers
for Medicare and Medicaid (CMS) definition of "durable medical equipment"
or by Medicaid if services are deemed to be "medically necessary"
and are covered under the different states' Medicaid plans or their
waiver programs. An eligible child with a disability may have access
to assistive technology (e.g., computer equipment, listening devices,
and communication equipment) to meet needs identified by the IEP
team to provide a free appropriate public education under the IDEA
educational activities and support his/her opportunities for educational
attainment through IDEA. State VR agencies and specifically the
AIVRS programs may provide technological equipment including sensory
and telecommunications devices; however, data from an evaluation
of the AIVRS59 suggests that the rehabilitation technology
services available through these programs may be limited.60
The effectiveness of these programs in assisting American Indians
with disabilities to access assistive devices is not known but,
based on lack of access to electricity, telephones, and cable, for
example, in remote/rural areas, it is widely believed that American
Indians residing in Indian Country face significant barriers to
accessing assistive technology.61
Limited Tribal Resources to Meet the Needs of People
with Disabilities on Tribal lands
American Indians and Alaska Natives are among the
most impoverished population groups in the United States. This is
particularly the case for American Indians and Alaska Natives who
live in Indian Country. Most tribal lands have small populations,
with high levels of poverty and unemployment. In 1990, for instance,
the second largest Indian reservation had a population of less than
12,000 and only 18 reservations had populations of over 5,000.62
The limited population size seldom is sufficient to generate revenues
for tribes that would enable them to directly fund any significant
level of services to meet the needs of people with disabilities.
Services are generally dependent upon a tribe's ability to develop
programs through federal or state funding.
Diversity Among AI/AN Populations
There are over 560 separate federally recognized tribes
and each has its own culture, history, health beliefs, and practices.
There is also a diversity of languages among the AI/AN population;
linguists recognize at least 62 language families among those spoken
by American Indians.63 Community attitudes and cultural
beliefs about the causes of disabilities and perceptions differ
substantially among tribes, with consequent differences in beliefs
about appropriate responses and support that should be offered to
people with disabilities.64 As a result, designing and
implementing culturally competent and culturally appropriate outreach
programs and training disability services professionals to offer
culturally competent services is not a simple task. There is not
a generic approach that can be adopted and used across all tribal
lands to address the needs of people with disabilities. Programs
must be tailored to the specific tribal population through significant
input from tribal members. The Tribal Disability Actualization Process
illustrates the tailoring of a one-to-one approach that is important
when addressing disability policy and services issues with individual
tribes. It involves bringing together a wide range of concerned
tribal members, using a "self-directed" approach for tribes to develop
disability legislation that respects tribal culture and sovereignty.65
While the model developed by the Tribal Disability Actualization
Process is a uniform one, it requires extensive work with individual
tribes and community members to produce change in attitudes and
effect change in policy. This process is described in more detail
below. With over 500 tribes in the United States, implementation
of this process across all tribes would require significant resources
and time to accomplish substantial change on behalf of people with
disabilities in Indian Country.
Assessing the Effectiveness of Strategies for Reducing
Barriers to Provision of and Access to Appropriate Services
Although strategies to advance the independent living
and self-determination realities of American Indians with disabilities
have been initiated, the review of the literature indicates that
the effectiveness of most efforts has not been empirically tested.
The few studies that report an evaluation component are methodologically
weak; small sample sizes and the use of subgroups that are not representative
of Indian Country as a whole are among the factors that limit the
ability to generalize findings from these studies to the larger
population of American Indians and Alaska Natives with disabilities.
Evidence on the extent to which initiatives have succeeded in removing
barriers to education, health, vocational rehabilitation, and independent
living among American Indians residing in Indian Country is primarily
anecdotal, with limited information on trends or analyses of patterns
across the data that might suggest similarity across findings.
Tribal Disability Actualization Process
Project staff at the University of Montana Rural Institute
on Disability AIDTAC designed and evaluated a model to assist tribes
in developing disability policy that reflects the tribe's culture
and values. This model is composed of four primary steps that are
designed to increase tribal members' awareness of unmet independent
living needs and enhance their understanding of the adequacy or
appropriateness of existing tribal disability policies. In the first
step of this process, a tribal member willing to advocate and assist
in educating the community on disability issues is identified. In
the second step, the authorization of the tribal government and
support for the actualization process is obtained; typically, this
is done through an educational presentation to tribal leaders. Step
three consists of focus groups or "talking circles" in which tribal
members (as well as invited state and local disability providers)
discuss beliefs concerning disability, unmet needs, sovereignty
issues, and approaches for establishing disability policy. In the
final step in the process, focus group members present to their
tribal governments a set of approaches for meeting the needs of
people with disabilities through tribal legislation.
A qualitative evaluation of the impact of the Tribal
Disability Actualization Process indicates that tribes that participated
in this process have in fact engaged in a variety of activities
that have resulted in an increased awareness of disability issues
within their communities and address barriers to independence within
the reservation. Among the outcomes attributed to the Tribal Disability
Actualization model are the following: the Oglala Lakota Sioux Tribes
in the Pine Ridge Reservation in South Dakota adopted ADA in 1994;
in addition to making enhancements to ensure the accessibility of
public buildings, tribes located in the Flathead Reservation of
Montana adopted a resolution that conformed to the spirit of ADA
and made modifications to policies to address hiring and training
of people with disabilities; and the Navajo Reservation in the Northeast
Arizona and Colorado Plateau initiated activities to arrange for
personal assistance training for tribal members.66
Education
A number of strategies have been developed and implemented
to increase the availability and effective use of special education
and related services for AI/AN children with disabilities.67
Several IDEA grants have been awarded to train special education
teachers to work with AI/AN students. These include the Reaching
American Indian Special/Elementary Educators (RAISE) project at
Northern Arizona University and two relevant projects at Pennsylvania
State University. The RAISE project provides opportunities for students
to work directly with Navajo children in local communities and schools
and offers experience with culture, language, and traditions. The
Pennsylvania State University program provides training in special
education and educational administration to AI/AN students and offers
them opportunities to conduct research on improving education of
AI/AN students with disabilities. Graduates of the program work
in special education in AI/AN communities for two years for each
year of funding they receive. In addition, the American Indian Higher
Education Consortium reports that 34 tribal colleges operate in
the United States. BIA reports that 27 tribal colleges receive BIA
funding. Some tribal colleges receive grants to train special education
personnel at all levels.
Programs are also available to provide education,
support, and assistance to parents of AI/AN children with disabilities
regarding rights and effective strategies to obtain services for
their children. Currently, 106 Parent Training and Information Centers
and Community Parent Resource Centers, funded by the U.S. Department
of Education, are located throughout the United States. Technical
assistance to the centers is provided by the Technical Assistance
Alliance for Parent Centers. These centers provide training and
information to parents of infants, toddlers, and school-aged children
and young adults with disabilities, as well as the professionals
who work with families. The assistance provided to parents helps
them participate more effectively with school personnel and other
professionals to meet the educational needs of children and youth
with disabilities.68 At least two of these centers specialize
in assisting AI/AN families who have a child with a disability.
The National Native American Families Together Parent Center (NNAFT),
located in Moscow, Idaho, is directed and staffed by members of
tribal communities. NNAFT provides information on the educational
rights of children with special needs; communicating with school
and medical personnel and other professionals; how to participate
in developing and monitoring a child's educational plan; and disability-specific
data on sensory, mental, emotional, or specific learning disabilities.
The centers recruit and train community members to provide support
and assistance to families of AI/AN children with disabilities.69
The Native American Family Empowerment Center, located in Lac du
Flambeau, Wisconsin, is a program of the Great Lakes Intertribal
Council. This program seeks to ensure access to services for tribal
families with children who have a disability, and other impairments
as determined under IDEA. This program works to empower AI/AN families
with knowledge to work with schools and state and local health and
human services agencies.70 These are two examples of
programs with a special emphasis on AI/AN populations. However,
it is important to point out that all of the federally funded parent
centers across the country are charged to serve all families whose
children have disabilities, including families in ethnically diverse
populations.71
With regard to testing methods, Faircloth and Tippeconnic
(2000) cite examples of school districts that have developed culturally
and linguistically appropriate testing methods to distinguish AI/AN
children with learning disabilities from those with cultural/linguistic
barriers to learning to ensure that referrals for special education
and related services are appropriate.
Although a variety of approaches have been designed
and implemented to improve services to AI/AN children with disabilities,
little data exists providing evidence of the impact of these strategies
on educational outcomes. In addition, since most educational services
for AI/AN children with disabilities are provided through state
programs (rather than on reservations through BIA-funded and tribally
managed programs), the major barriers to appropriate educational
services are similar for both AI/AN and non-AI/AN children with
disabilities. However, cultural and language differences may create
additional barriers for the effectiveness of mainstream services
that are provided to AI/AN children.
Vocational Rehabilitation
Available evidence suggests that American Indians
with disabilities who complete a program of vocational rehabilitation
are likely to experience employment outcomes superior to American
Indians who are not rehabilitated. A study that analyzed the employment
status of 21 American Indians who participated in VR programs and
40 American Indians who participated in job training programs found
that 85 percent of those who completed their VR program were employed
following rehabilitation, compared with only 25 percent employment
among American Indians, living on and off reservations, who were
not rehabilitated. Similarly, 63 percent of American Indians who
successfully completed a job training program or were "positively
terminated"-meaning they were employed 13 months following the job
training program-were employed, compared with only 8 percent employment
among the population with training.72
The 64 projects that were supported through the AIVRS
program in 2001 served approximately 4,500 persons.73
Estimates suggest that of the consumers served by these AIVRS projects,
over 28 percent had a substance abuse problem, 22 percent had an
orthopedic disability, 17 percent had a mental or emotional disability,
and 15 percent had a learning disability. Interestingly, in interviews
with project staff conducted as part of an evaluation of the AIVRS
program, respondents indicated that American Indians/Alaska Natives
with physical disabilities were most likely to be in need of but
not receive AIVRS services.74
Although estimates were not independently validated,
data reported to RSA by tribal VR agencies indicates that nearly
65 percent of American Indians who exited the AIVRS program in 2001
achieved an employment outcome.75 In their evaluation
of the AIVRS program, which was conducted under contract to RSA,
Hopstock et al. noted that in fiscal years 1998 and 1999, only 53
percent of AI/AN consumers who exited state VR programs achieved
successful employment outcomes.76 During fiscal year
2000, 963 American Indians with disabilities were successfully rehabilitated
under AIVRS programs. In addition to the successful rehabilitation,
tribal VR programs served 4,178 AI/AN consumers. Thirteen tribes
or consortia applied but were not funded in fiscal year 2000 for
AIVRS programs. In the 2001 fiscal year, insufficient funds prevented
9 out of 14 tribes or consortia from being funded for AIVRS programs.
With the potential to achieve positive results from AIVRS programs,
reauthorization with an increase in funding is desperately needed.77
Vocational Rehabilitation: Native American Technician
Program
The Native American Technician (NAT) program was established
by the Florida State Vocational Rehabilitation Agency as a pilot
rehabilitation program. The NAT program is premised on the belief
that because tribal members are most familiar with their American
Indian values and culture, they are also best suited to conduct
outreach in their respective communities. Through contractual agreements,
the state arranged for Indian members of the community to assist
non-Indian counselors in providing VR services to the Indian community.
Among their responsibilities, NAT assisted the agency in case management
and identified members of their community who were in need of but
had not received VR services. Preliminary evidence suggested that
the NAT program succeeded in increasing participation of American
Indians in the state VR system.78 However, the program
lost funding sometime after 1996. In its place, a pilot program
called the Native American Outreach Program was begun in Gainesville,
Florida. Outreach counselors from the program attend powwows and
tribal gatherings, where they inform American Indians with disabilities
of available government programs and funding. Referrals and applications
are provided as needed. Further follow-up will be needed to assess
the outcomes of this program.
Vocational Rehabilitation: Self-Employment Options
The Jemez/Zia Vocational Rehabilitation Center in
New Mexico and the Tanana Chiefs Conference Vocational Rehabilitation
Program in Fairbanks, Alaska, are among the programs that are assisting
American Indians with disabilities to achieve independence through
self-employment. In addition to receiving training in budgeting
and marketing, skills that are necessary to operate a small business,
the Jemez/Zia program employs tribal people with disabilities to
train clients in one of several crafts, such as pottery making or
silversmithing. Among the successful outcomes that the Tanana Chiefs
VR program seeks is for clients to enter into competitive employment,
become self-employed, or engage in subsistence hunting, fishing,
and trapping. Subsistence hunting and fishing are respected as culturally
appropriate and as an exercise of a person's right to self-determination.
Both the Jemez/Zia and the Tanana Chiefs programs assist clients
in purchasing or obtaining supplies and equipment to operate the
clients' businesses. Emerging patterns across anecdotal evidence
indicate that these programs are succeeding in their goal of assisting
people with disabilities to move toward economic self-sufficiency;
however, empirical evidence of these impacts is unavailable.79
Independent Living and Transportation in Indian Country
Recognizing that a weak transportation infrastructure
may limit economic opportunities and pose a substantial barrier
to accessing essential health and social services, several tribes
have developed transportation systems that may be replicated. For
instance, with funding from RSA, the tribally controlled Salish
Kootenai College (SKC) on the Flathead Reservation of Montana developed
a point-to-point transportation system for residents of the reservation
with disabilities. The SKC transportation program purchased wheelchair-accessible
vans and coordinated access to employment and rehabilitation services
as needed by both tribal and nontribal members of the community.
An early (six-month) evaluation of this program indicated that ridership
was below initial projections. Eligibility limitations and difficulties
in advertising availability of services in rural communities were
thought to account for this initial low rate of use.80
Current information on the status of this program was not available
for this NCD report.
Several tribes have also used funding obtained from
a combination of federal and state sources (e.g., the Federal Transit
Administration, the HHS' Administration on Aging, Medicaid) to develop
transportation systems that are accessible to people with disabilities.
These systems were designed to link tribal members to employment
centers and health and human services programs. Among the tribes
with such transportation systems, the Chickasaw Nation Transportation
System in Oklahoma, the Navajo Transit System in Arizona, and the
Shoshone and Arapaho Nation Transit Association in Wyoming operate
paratransit vans or vehicles that are fully accessible or ADA compliant.81
Although it may be reasonable to assume that these transportation
systems enhanced the independent living opportunities of people
with disabilities living in Indian Country, empirical evidence is
not available in the literature.
Independent Living and Training Models for Sensitivity
Staff of AIRRTC developed and pilot-tested an independent
living training workshop to provide technical assistance to service
providers and policymakers on the provision of outreach services
culturally appropriate to AI/AN clients with severe disabilities.
The purpose of this training module was three-fold: "(1) identify
differences among American Indian cultures.(2) create outreach independent
living services for American Indians with severe or significant
disabilities on and off Indian lands, and (3) identify strategies
related to the independent living needs of American Indians."82
The training module assists participants in developing "Blue Prints
for Action Plans"-strategies for providing outreach to American
Indians with disabilities-and identifying resources to implement
the plans. Reports of results connected with outreach training at
one month, three months, and six months suggested that the 16 program
participants were able to identify and/or had taken action toward
implementing outreach strategies to assist AI/AN clients with disabilities
to achieve their independent living objectives.
Staff of the Northern Arizona University also developed
a program to train American Indian community representatives to
understand and address the independent living needs of elderly American
Indians with visual impairments. Representatives from tribal health
departments, senior citizen programs, and other service programs
were invited to participate in a five-day workshop in which hands-on
training on topics such as the techniques for mobility and daily
living, assistive devices, and cultural and rural issues were provided.
The 38 trainees were required to practice newly acquired skills
with visually impaired volunteers. Following the workshop, an in-service
training with tribal members was conducted to address the specific
needs of the reservations. Evaluation of the workshop was conducted
using a pre- and post-test design. The improvement in test scores
suggested that the workshop objectives had been met. Study investigators
reported that the community representatives who were trained under
this one-year program served a total of 211 American Indians with
visual impairments.83
Independent Living and Personal Assistance Services
Recognizing the need for culturally sensitive personal
care services, the Blackfeet tribal council adopted and guaranteed
start-up funds for the Blackfeet Personal Care Assistance (PCA)
program. The program hires, trains, and arranges for attendants
to provide services to tribal members. The program also provides
case management services for elderly tribal members with dementia
or Alzheimer's disease and has worked to bring independent living
apartments to the local community. The Blackfeet PCA program is
believed to be among the largest of the personal assistance providers
operating in the State of Montana. Most clients are Medicaid-eligible,
and funding for program services is obtained largely through Medicaid.
Anecdotal evidence suggests that tribal members favorably received
the Blackfeet PCA program and that the program has contributed to
the local economy through the hiring and training of personal assistants.84
A Single Independent Living Center in Indian Country
ASSIST! to Independence is a Native American-operated
nonprofit organization that has been very effective in reducing
barriers to the provision of, and access to, appropriate services
for those tribal members living on reservations. ASSIST! is located
on the western edge of the Navajo Reservation in Tuba City, Arizona,
and provides services to individuals with disabilities, or chronic
health conditions, residing on or near the Navajo, Hopi, and Southern
Paiute Reservations. At present, it is the only ILC located in Indian
Country.
ASSIST! provides culturally relevant services to cross-disability
American Indian consumers and its programs emphasize quality of
life and community access through the maximization of independence
and the improvement of functional skills. Community members with
disabilities created ASSIST! to respond to the need for a more flexible
service delivery system, where all services reflect the following
independent living principles: (1) it is consumer controlled at
the operating policy level with a board of directors that consists
of a majority of people with disabilities; (2) the majority of administrative
and staff-level personnel are represented by people with disabilities;
(3) there is an emphasis on cross-disability consumer services;
(4) there is an emphasis on peer role modeling and consumer-controlled
service objectives; and (5) the four core services of advocacy,
peer mentoring, independent living skills training, information
and referral are provided. In addition, ASSIST! has provided services
such as home modifications, transportation, attendant care, assessment
and evaluation, and AT demonstration/loan.85
In 2002, ASSIST! was one of four winners of The Association
of Programs for Rural Independent Living's competition for The Best
Center for Independent Living Practices in Rural Independent Living
to Emerging Disability Populations.86 Also, in 2002,
ASSIST! was recognized by the National Council on Independent Living
as a Best Practice for Assistive Technology Projects.87
The main factors contributing to the ability of ASSIST!
to successfully reduce barriers to the provision of and access to
appropriate services for tribal members living on reservations are
(1) dynamic and fluid services allowing for a quick response to
needs; (2) understanding, respecting, and immersing in the culture
being served; (3) aggressive outreach promoting "wellness" services;
(4) extensive networking and collaboration activities; (5) developing
relationships with nontraditional disability specialists (senior
centers, public health nurses, community health representatives,
etc.); and (6) maintaining a visible presence in the community (senior
functions, health fairs, etc.).88
Statistical data, maintained by ASSIST!, exemplifies
the positive impact that this organization has had on tribal members
with disabilities living on reservations. Between October 1, 2001,
and September 30, 2002, ASSIST! opened a case file and conducted
ongoing case management for 1,098 individuals with disabilities,
of all ages; processed 415 phone and e-mail requests; assisted 784
people who visited the center (721 of whom were American Indian);
and conducted 143 off-site visits.89
Of the many individuals served by ASSIST! in 2002,
roughly 85 percent were referrals received from collaborative efforts
developed with community health representatives and public health
nurses. The remaining 15 percent were individuals who investigated
independent living services on their own. Approximately 70 percent
of the ASSIST! budget is devoted to direct consumer services.90
Limitations to Understanding Issues of People with
Disabilities Living in Indian Country
It is difficult to ascertain the extent to which many
programs or initiatives actually impact outcomes since many of the
studies or programs identified in the literature, particularly literature
on effective strategies for reducing barriers to access, do not
include a formal evaluation component. In some cases, failure to
evaluate program effectiveness was attributed to lack of funds.
In those cases where a formal evaluation appears to have been conducted,
small sample sizes, failure to account for confounding factors,
and the lack of a control group for comparison make it difficult
to determine the actual effect of these initiatives or whether these
model programs may be successfully replicated in other tribes or
settings.
Much of what is currently known about people with
disabilities living in Indian Country-from estimates of the size
of the population to information on the impact of barriers to successful
education, health, vocational rehabilitation, and independent living
outcomes-has been based primarily on anecdotes, individual perceptions,
and/or studies with limited statistical validity. The ability to
use the information gathered from these studies to identify the
unmet needs of American Indians and Alaska Natives with disabilities
who reside in Indian Country may be limited by flaws in the methodological
or research design and the failure of some studies to understand
the characteristics of the AI/AN population.
For instance, data on the size of the AI population
with disabilities and the nature or types of disabilities that they
experience is among the most basic information for understanding
their unmet needs. Yet, the reliability or precision of the estimates
that are presently available are affected by discrepancies in the
classification of people as American Indians and Alaska Natives,
small sample sizes, inconsistent definitions of terms for types
of disabilities, and use of nonrepresentative samples to derive
these figures. The understanding of trends in the growth of the
AI/AN population is significantly affected by changes in the reporting
of race and ethnicity that occurred between the 1990 and 2000 censuses
and specifically the change from single to multiple race groups.
As previously discussed, depending upon whether individuals of multiple
races are included, estimates of 10-year growth in the AI/AN population
range between 26 percent and 110 percent. This wide variation makes
large-scale program planning more challenging.
Information on the characteristics of the American
Indian population with disabilities that are derived from national
surveys and even those surveys that are commonly used to study disability-related
issues (e.g., the National Health Interview Survey, the Medicare
Current Beneficiary Survey, SIPP) are often not statistically reliable
for analyses of certain populations of people from diverse cultures.
The size of the AI/AN population is small relative to that of other
groups and the number of American Indians and Alaska Natives with
disabilities is an even smaller population segment. If oversampling
techniques have not been applied, the margin of error associated
with these estimates could be relatively large. This sampling issue
is one of the primary reasons why many studies do not analyze data
separately for population segments of people from diverse cultures.
Service records, such as RSA data on VR closures or
IHS hospital discharge data, have also been used to gain an understanding
of the types of chronic and disabling conditions that are most prevalent
among American Indians and Alaska Natives. Although analyses of
the characteristics of American Indians and Alaska Natives with
disabilities that are conducted with this data may not be affected
by small sample sizes, they may have poor external validity. People
who utilize these services may not be representative of the target
population, and the ability to generalize findings from these studies
to the larger AI/AN population may be limited.
Social and environmental factors, such as the high
poverty rate and poor living conditions, may also make it more challenging
for people studying the American Indian population. As noted by
investigators in the Strong Heart Study, the recruitment of American
Indians in studies may pose particular difficulty because "[d]ocumented
historical events may also affect the spirit of cooperation in government-funded
studies of the AI people.."91 Practical considerations
such as the lack of street addresses, telephones, and transportation
also make it difficult for American Indians with disabilities who
are living in Indian Country to participate in health and social
services programs or in studies that assess and attempt to address
their unmet independent living needs.
Tribal values are likely to affect the adequacy and
comprehensiveness of many studies dealing with access to and services
for people with disabilities in Indian Country as well as tribal
members' willingness to participate in initiatives to reduce barriers.
AI/AN culture, languages, traditions, and beliefs concerning health
and disability are distinct across tribes. Studies that "combin[e]
groups as separate as Seminole and Sioux into one category called
'Indian' seem little different than combining Polish Jews and Scottish
Protestants into one category called 'European'."92 Regardless
of the intended benefits, a program that fails to incorporate cultural
beliefs will have difficulty in obtaining community support. Similarly,
a study that is not culturally competent may obtain incomplete or
inaccurate information. As one example, the word "disability" is
often value-laden. Depending on tribal beliefs and values surrounding
the term, American Indians who are asked to self-identify on the
basis of disability may be reluctant or refuse to participate in
programs that promote independent living objectives, vocational
rehabilitation, or special education. Participatory action research
methods, such as that used in the Tribal Disability Actualization
model, which includes consumers in the design and implementation
process, have been recommended as a means to ensure that research
is culturally sensitive and findings are both accurate and relevant.93
Federal Responsibility to Address Gaps in Knowledge
This study begins to scratch the surface of understanding
the issues faced by people with disabilities in tribal communities.
Federal agencies with significant trust responsibilities to Indian
tribes must become much more engaged with and committed to addressing
the gaps in research, services, and protections related to this
population. Specifically, the U.S. Departments of Education, Interior,
Justice, and Health and Human Services have particular interest
in better understanding people with disabilities in tribal communities.
Although a substantial amount of literature addresses issues relevant
to access to and use of services by people with disabilities in
Indian Country, the issues discussed above may limit the usefulness
of much of the research. This is of particular importance when research-based
evidence is sought for planning and developing effective strategies
to increase services to people with disabilities in Indian Country.
On the basis of available existing research and data,
conclusions may be drawn as follows:
1. A significant number of American Indians and
Alaska Natives in Indian Country have disabilities.
2. Services and accommodations to assist people
with disabilities in Indian Country are limited and availability
of supports and services varies across Indian Country.
3. Limited legal protections, limited financial
resources, and lack of awareness about the needs of and strategies
for enhancing opportunities for people with disabilities are major
barriers that must be overcome to increase availability of appropriate
services in Indian Country.
4. Cultural awareness and competency are important
aspects of any strategy to increase knowledge and awareness of
the needs of people with disabilities and to design and implement
effective programs to meet those needs.
5. The complex federal-state-tribal government relationships
and the complicated maze of programs that fund and administer
implementation of laws and programs serving people with disabilities
pose communication and coordination barriers to improving the
provision of services in Indian Country.
The potential for developing effective strategies
to increase the availability and use of services to people with
disabilities in Indian Country would be enhanced by additional data
collection and research in several specific areas, including
- Collection of systematic data on the number of
people with disabilities in Indian Country, by type of disability
and geographic location
- Identification of the service needs of people
with disabilities in Indian Country, by geographic area
- Comprehensive review and documentation of existing
programs and current services available in Indian Country, by
geographic area
- Estimation of the gap between need and available
services, by geographic area
- Identification of promising practices, or what
seems to be working effectively, based on outcomes, for education,
health, vocational rehabilitation, and independent living
American Indians and Alaska Natives constitute a very
diverse set of multiple cultures, traditions, and languages that
make it difficult to generalize findings from research in a generic
way. As a result, research designed to provide a foundation of knowledge
for designing and implementing strategies to increase the availability
of services to people with disabilities in Indian Country will require
early involvement in planning and decisionmaking, as well as leadership
and direction by AI/AN researchers and program managers. In addition,
findings from future research will require adaptation and modification
to be effective in different tribes.
Key Respondent
Interviews
"The perspective I think we need to take is
a national perspective, which is not just about our own tribe
but about all native people."
-LaDonna Fowler, Turtle
Mountain Chippewa/Santee Sioux/Assiniboine
The core research strategy in this project was an
interview and focus group methodology that provided a free-flow
process of information gathering. Open-ended qualitative interviews
allowed a flow of feedback to inform and guide the research. The
following techniques were used for deepening the inquiry into the
issues affecting people with disabilities in Indian Country:
- Tribal and federal key respondent interviews
- Focus group interviews
- Informal talks with professionals and community
advocates
Methods for analyzing and interpreting qualitative
interviews vary widely. For this report, Technical Expert Panel
(TEP) members expressed a desire for a participatory approach toward
research. This method appears to be more congruent with AI/AN cultures.
The analysis and interpretation of data through a participatory
approach with the TEP assisted stakeholders in the construction
of a common body of knowledge. The TEP and interviewees served as
co-researchers in the project. As new information emerged from the
interviews, there was an inquiry into the meaning of the information,
what the information suggested, and why. This process generated
new questions, thereby deepening the inquiry that served to test
the explanations or confirm interpretations. Each phase of the process
included gathering, interpreting, testing, and revising information
until a reasonable explanation was developed. Once the analysis
was complete, stakeholders collaborated on findings, conclusions,
and recommendations. In addition to summarizing the tribal and federal
interviews, the following section also highlights promising practices
and model approaches identified as examples of improving government-to-government
relationships, as well as expanding services for people with disabilities
living in Indian Country.
The discussions with key respondents from the 10 tribal
communities occurred between September 9, 2002, and January 13,
2003. The 10 tribes were selected from a list of tribes recommended
by the TEP. The TEP members were asked to nominate tribes that they
believed to be actively engaged in developing programs, services,
or tribal laws/ordinances that address the needs of people with
disabilities in their communities. On the basis of this preliminary
list, tribes were sorted to provide geographical representation
across the United States and to reflect diversity in the size (small,
medium, large) of the tribes. Finally, only tribes who agreed to
participate in this project were interviewed. In alphabetical order,
the 10 tribes interviewed were the Confederated Salish and Kootenai
Tribes of the Flathead Reservation, Montana; Cook Inlet Tribe of
Alaska; Hopi Nation of Arizona; Navajo Nation of Arizona, New Mexico,
and Utah; Oglala Sioux Tribe of Pine Ridge, South Dakota; Oneida
Nation of Wisconsin; Pueblo of the Zuni, New Mexico; St. Regis Mohawk
of New York; Three Affiliated Tribes of North Dakota; and the Yakama
Nation of Washington State.
Tribal Interviews
As stated earlier, each tribe addresses the unique
circumstances of tribal members with disabilities in very different
ways. The task was to identify those tribes across the country that
demonstrated leadership in creating awareness, developing programs,
adopting tribal laws, and meeting the needs of its tribal members
and descendants with disabilities. Leaders and advocates in the
Indian Country disability movement recommended 16 tribes for a nationwide
inquiry about promising practices in leadership as described above.
Of the 16 tribes recommended, 10 were randomly selected for follow-up
interviews. Letters sent to the tribal leaders of each tribe introduced
the research project and requested permission for representatives
of their tribal programs to participate in the interview process.
Interviews were then scheduled with appropriate program directors.
Discussion guides for interviews touched upon tribal
government support through the development of disability laws, support
services, major barriers, and promising practices for people with
disabilities; access to health care; barriers to health care; children
with disabilities who are treated differently; available employment
services through the tribe; and what types of information or resources
would be helpful to tribes. The tribal program representatives'
interviews provided more than ample information, and wisdom was
shared during the brief discussions.
Confederated Salish and Kootenai Tribes
In 1995, the Tribal Council of the Confederated Salish
and Kootenai Tribes (CSKT) adopted a resolution in the same spirit
as ADA.94 Under the guidelines set forth by this resolution,
the tribe modifies buildings or work environments according to the
access needs of tribal members with disabilities. The CSKT have
adopted a "one-stop shop" approach to providing services to tribal
members with disabilities. At one location, tribal members can access
not only VR services, but also, under a Temporary Assistance for
Needy Families (TANF) grant, Medicaid, commodities, General Assistance,
cash assistance, trust management, Individual Indian Money accounts,
childcare, and senior care. Satellite offices in smaller towns help
to increase the accessibility of services. By integrating services,
the staff and management of these programs are able to make better
use of resources, which improves service coordination and delivery
of services to tribal members with disabilities.
The promising approach taken by the CSKT entailed
networking and developing coordinated services through partnerships
within agencies in the tribe as well as with agencies and organizations
external to the tribe. The VR director for the CSKT also serves
on the state rehabilitation council and the State Independent Living
Board. In addition to strong partnerships developed with Salish
Kootenai College, she attends conferences to keep abreast of the
changes in and developments of programs, funding, grants, and service
opportunities.
Cook Inlet Tribe
The Cook Inlet Tribal Council, located in Alaska,
has a Section 121 Vocational Rehabilitation Program that serves
the Cook Inlet Region.95 The Cook Inlet Tribal Council
faces different challenges than tribes in the lower 48 states, as
their lands and jurisdiction are not necessarily "reservation based"
but are based on village affiliation, with some Native and village
land allotments. The program is in its third year of operation.
Participants must have either a tribal or Native village affiliation.
In many of the villages there is no economic base and unemployment
may exceed 50 percent of the population. Lack of transportation
is also an extreme barrier to employment.
Over 70 individuals with disabilities currently receive
assistance through the Cook Inlet VR program. To help tribal members
with disabilities overcome obstacles, each tribe provides different
employment-related services, which range from career guidance and
training to a consumer work center on the Internet. The VR program
provides services as outlined in the Rehabilitation Act and is in
the beginning stages of a school-to-work transition program. The
Cook Inlet Tribe is also outlining VR procedures with the state
to further collaborative efforts. People with disabilities benefit
by the coordination of services offered through Cook Inlet, including
assistance with the state's TANF and other resources.
Hopi Nation
The Hopi Nation's continuum of services for tribal
members with disabilities extends from early infant and childhood
intervention to adult VR services with their recent award of a Section
121 grant.96 Grassroots parent advocacy has been at the
heart of the Hopi Nation's service approach. In 1996, the tribes
established the Office of Special Needs. Since the Office was formed,
partnerships within the community and with national organizations
have helped it to grow and become a community resource. These partnerships
have allowed the Office of Special Needs to host training and education
sessions on topics such as Social Security, fetal alcohol syndrome
and fetal alcohol effect, parent mentoring, and caregiver training.
These trainings provide the Hopi community, including families of
children with disabilities, with an increased awareness about issues
and resources for Hopi children with disabilities.
The Special Needs Activity Day held each year exemplifies
the unique community approach that this program has taken. Since
1996, attendance at the event has grown from a core of interested
parents to 600 participants last year. The theme is "Celebrate Diversity-Everyone
is Unique." Support for the events, activities, and refreshments
is provided in part by a grant from the Arizona Governor's Council
on Developmental Disabilities. In addition, other Hopi community
programs and outside agencies volunteer their time to make this
event so successful. The Hopi Nation, by creating a central office
to assist people with disabilities, has vastly improved the understanding
of its community, the awareness of tribal programs, and the access,
support network, and services for individuals with disabilities
and their families.
Navajo Nation
The Navajo Nation tribal VR program was the first
tribal VR program in the country, paving the way for other tribal
VR programs in the nation. In the mid-70s, Navajo Nation leaders
recognized a serious gap in VR services to tribal members with disabilities.
This gap was due, in large part, to the fact that the Navajo Nation
spans the corner of three states: Arizona, New Mexico, and Utah.
Concern about this gap in services sparked negotiations between
the Navajo Nation and surrounding states. Navajo leaders provided
strong testimony during the reauthorization of the Rehabilitation
Act during the mid-1970s. Because of the Navajo Nation's unique
position in a tri-state area, Navajo leaders felt that their tribe
needed to be funded directly rather than having funds funneled through
each state office. This made the Navajo Nation the first tribe to
receive the funds under the RSA grant, which provided greater access
to vocational rehabilitation for tribal members with disabilities.
Currently, this program is funded through a five-year grant from
the U.S. Department of Education's RSA.97
Serving Navajo children are 32 schools located on
and off the Navajo Reservation. It is estimated that 85 percent
of the student population in these schools are Navajo children.
The director for Safe Schools and Healthy Students and former council
member of NCD believes that schools need to focus more on career
development for Navajos with disabilities.98 Students
are not typically encouraged to continue with any education beyond
high school.
Support to provide individuals with the assistive
technology they need has been obtained through a loan to the tribe
from the Department of Vocational Rehabilitation. This unique service
allows consumers to try out AT equipment on a loan basis to see
what works for them. The Navajo Assistive Bank of Loanable Equipment
Consortia is an organization composed of professionals from a variety
of fields with the goal of assisting people with disabilities. The
needs of individuals with disabilities are addressed in tribal regulations
that were developed approximately 15 years ago by consumer advocates
who gave testimony at an open tribal council meeting on topics such
as special education, vocational rehabilitation, employment, and
housing. These comments were then used as the basis for current
tribal legislation.99
While the effectiveness of many of the Navajo Nation's
programs and services for individuals with disabilities has been
hampered by barriers caused by jurisdictional overlap, language,
and geographic remoteness, the tribal government has worked to offset
these barriers and uphold its responsibility to tribal members with
disabilities through a unique financial trust fund for programs
and service provision. About 10 years ago, a former president of
the Navajo Nation oversaw the set-aside of monies obtained from
renegotiation of land lease contracts for agencies that provide
services to Navajos with disabilities, including border towns. Each
year a committee that manages the trust fund reviews proposals from
agencies and awards grants from the interest accrued by this trust
fund. Grants have been awarded to provide for needs of tribal members
with disabilities, which have ranged from creative employment options
to improving rehabilitation services and decreasing agency caseload.
Oglala Sioux Tribe
The Oglala Sioux Tribe passed the Americans with Disabilities
Act in 1991.100 It is the only tribe thus far to undertake
the step of adopting within its own tribal code the entire ADA,
thanks in large part to the power of leadership within the tribal
council, which included at that time a tribal member with a disability
and member of the "Quad Squad," a grassroots advocacy group for
people with disabilities. However, tribal interviews report that
enforcement of the ADA provisions, particularly with regard to physical
infrastructure and parking, is still a problem.
The Oglala Sioux Tribe's Quad Squad has become an
active advocate for people with disabilities. The Quad Squad collaborates
with state agencies to help consumers find support services. Although
most support services are provided through the state, many people
did not know how to obtain them. The Quad Squad helps increase the
access that tribal members with disabilities have to resources,
assistive technology, and employment by helping and advocating for
them. As advocates for people with disabilities, the Quad Squad
has worked for safe and accessible sidewalks, crossing lights, housing,
transportation, and purchases of wheelchairs and other equipment.
Oneida Nation
Located in Wisconsin, the Oneida Nation has developed
a strong employment-centered service program and has had success
in finding work placements for many tribal members with disabilities.
In 1995, the Job Training Program was developed because tribal members
with disabilities were not receiving the kind of assistance they
needed from state or other employment programs.101 Program
enrollment and dropout rates identified this service as one that
needed to be addressed from a tribal perspective. The job center
was designed as a one-stop service approach that provides mental
health, childcare, and other related services in a seamless delivery.
Developing employment opportunities through participation in a workforce
diversification initiative has helped to reduce employment barriers
for tribal members with disabilities. The tribe also supplements
funding for its IHS health clinic to provide four doctors and a
complete nursing staff.
The next goal that the program has set for itself
is extending the reach of its services to include those tribal members
who may be reluctant to identify themselves as people with disabilities
or to ask for help.
Pueblo of the Zuni
The Pueblo of the Zuni, located in Northwest New Mexico,
is the largest of 19 pueblos in New Mexico.102 The population
is approximately 11,000 people, of which about 96 percent are enrolled
tribal members. The area is remote and isolated and covers about
1,000 square miles.
The tribe has a comprehensive array of services for
tribal members with disabilities, which include supported and assisted
living services and employment services. Supported living and assisted
living services allow tribal members with disabilities to live more
independently. Supported living provides one-on-one services on
a 24-hour basis. Assisted living provides services for individuals
with the ability to live more independently. Employment support,
which includes supported employment, vocational rehabilitation,
and day habilitation, provides tribal members with disabilities
with increased opportunities for employment.
An extensive public transportation program supports
people with disabilities as well as other members of the community.
Last year the transportation program provided approximately 33,000
trips around the community. Transportation services are funded by
multiple sources. The tribe has a Section 5311 grant that assists
with administrative monies and capital and recently received approval
to provide transportation under the Medicaid program. The transportation
program also serves as a mechanism to employ people with disabilities.
St. Regis Mohawk Tribe
The St. Regis Mohawk tribal government has been active
at the local, regional, and national levels in promoting tribal
resolutions to address disability issues.103 The tribe
is in the process of implementing tribal codes that pertain to disabilities.
The St. Regis Mohawk Tribe collaborates with the county,
state, and federal governments to offer a wide array of services
to people with disabilities, ranging from family support programs
to vocational rehabilitation. The tribes have a family support program
that provides transportation to appointments and grocery shopping,
which gives tribal members with disabilities increased mobility.
A respite service for parents of children with disabilities provides
support to families who have children with disabilities living in
the family home. An adult recreation program and an inclusive afterschool
recreation program are also available, so that tribal members with
disabilities can be active community members.
Members of the staff for the tribal VR program have
an excellent working relationship with the state VR program staff.
This increases the level of effectiveness for services that can
be provided to participants.
Three Affiliated Tribes
The Three Affiliated Tribes report that the tribal
government has adopted requirements to protect and serve people
with disabilities in their communities. The tribe's legal services
department is called upon to help tribal members with disabilities
resolve any complaints or appeals. Services and support for people
with disabilities are coordinated through the tribes' Social Service
Program. Networking and personal attention have been keys to the
success of the Three Affiliated Tribes' Social Services Program.104
The Social Services staff is knowledgeable about the services available
through both the tribe and other agencies, thus making them better
prepared to help tribal members with disabilities get their needs
met.
The Three Affiliated Tribes provide General Assistance
and grants to families, including people with disabilities. The
Social Services Program will also research other services for which
tribal members with disabilities may qualify and provide advocacy
for them at tribal, state, and federal levels. The Program has found
that assigning one person to follow the client through the entire
application process increases the effectiveness of obtaining services.
Working in collaboration with county, state, and federal agencies,
the Three Affiliated Tribes can better serve clients.
Yakama Nation
Services for individuals with disabilities living
on the Yakama Reservation are provided through the tribal VR program,
the IHS clinic system, the Community Health Representative program,
the Veterans' Affairs program, and the Home Health program.105
In the past, the welfare-to-work program was used to provide transportation
services; however, funding is no longer available. There are ongoing
attempts through memoranda to educate the tribal council about the
needs of tribal members with disabilities, such as providing curb
access to public tribal buildings. Diabetes and alcoholism are the
disabilities with the greatest impact on the community and where
services are currently focused.
The promising approach taken by the Yakama Nation
involved education, outreach, and program development. To accomplish
this goal, the Yakama Nation hosted a 2002 Regional Disabilities
Conference. Area programs had the opportunity to come together,
share experiences, and learn from each other. The VR program director
believes that ongoing workshop and program opportunities for awareness
and collaboration and developing coordinated services between state
and tribal programs are essential to strengthening the local services
and resources available to tribal members with disabilities.
Key Elements of Promising Practices
Leaders and advocates in the Indian Country disability
movement recommended tribes that exemplified successful practices
that enhanced program and/or service results for people with disabilities.
Of the 16 tribes recommended, 10 were selected for follow-up interviews.
Throughout the interviews with leaders of tribal programs
and services, certain themes emerged across the different tribes.
The themes of leadership and program qualities appeared to be key
elements of success. This rich information can 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 identified in tribal
communities.
Leadership Characteristics
A program leader who embodies the qualities and characteristics
of passion, perseverance, vision, commitment, change agents, consistency,
and connection and who is seen as an agent of hope can influence
greatly the success of a program. Appendix F provides a more detailed
description of common qualities and characteristics.
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 to the unique needs presented in each tribal community
and to 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 do not know how to or cannot 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, consideration needs to be given to the power of collaboration
and an overarching awareness of local tribal culture. Unless programs
are culturally responsive, consumers will not patronize the services
offered to assist them. Knowing the consumer through meaningful
inclusion in planning and hiring, and risking innovation in program
designs to fit consumer needs, rather than attempting to fit consumers
to program designs, are critical for success. Combined support from
tribal leadership, committed and culturally responsive program staff,
and positive results can realize enhanced empowerment for people
with disabilities in Indian Country.
Federal Interviews
A series of interviews were conducted with federal
and regional officials on government-to-government improvements.
The selection of federal agency staff who were interviewed for this
task was a joint decision, with input from the TEP. Three initial
federal contacts were selected and then asked for additional suggestions
of other officials to interview. This process led to the use of
staff from headquarters and from regional offices in some agencies.
Ten federal interviews were conducted between September
15 and October 16, 2002. Interviewees included individuals who had
management or operational responsibilities for AI/AN policies and
programs within the following federal agencies: Administration for
Native Americans, HHS; Administration on Aging, HHS; BIA, Department
of the Interior; Department of Education; Department of Labor; IHS,
HHS; and the Social Security Administration, HHS.
Discussion guides were developed and reviewed with
the NCD project officer prior to the interviews with tribes and
federal and state officials (see Appendix B). The discussion guides
were used by the interviewer to focus the discussion, rather than
as a formal questionnaire.
Department of Health and Human Services: Indian Health
Service
IHS' Elder Care Program contributes to policy development
and consultation with the tribes on issues affecting elders, including
elders with disabilities.106 IHS held a roundtable on
elder issues in April 2002, and much of the discussion and focus
of the meeting emphasized the importance of developing stronger
linkages between the disability community and elders, since both
groups are facing many of the same challenges in obtaining similar
services.
IHS is working to develop mechanisms to support tribes
in their development of support and programs to meet the needs of
elders with disabilities. The approach is one that recognizes that
tribal culture and understanding of disabilities are different from
that of mainstream culture; tribes must develop culturally appropriate
services and programs to meet their unique situations and preferences.
The optimal approach is one that creates tribally controlled programs
that are planned and developed by each tribe.
The public health advisor involved with long-term
care issues was interviewed for this study. She works closely with
the Offices of Tribal Self-Governance and the Office of Treatment
Activities.107 With funding through these offices, tribes
have a number of options: they can subcontract, purchase services,
and/or provide services directly and pay salaries-such flexibility
was touted as one of the strengths of crafting federal policy to
match tribal environmental and political realities/needs. Moreover,
this flexibility insulates tribes from having to "spend-down," when
such action may not be in the best interest of effective program
administration; they can also roll-over funds to the next year if
necessary.
As a result of current funding mechanisms, the government-to-government
relationship between IHS and tribes is well established. In 1975,
the Indian Self Determination Act (P.L. 93-638) provided authority
for tribes to contract and administer IHS programs directly.108
More recently, federal law has allowed for increased flexibility
for tribal contractors through a permanent self-governance program.109
These two federal statutes provide a common point of reference and
understanding that affirms the right of each tribe to determine
if health services will continue to be provided through IHS or be
administered through the tribe. In addition, frequent meetings between
various IHS staff and tribes on funding issues and health services
programming provide for enhanced interaction. One of the most significant
stressors to government-to-government relationship is the unmet
level of funding-a persistent undercurrent in almost any federal-tribal
interaction.
The trend in CMS is to pay more attention to providing
services on the reservation or at home. By fusing a series of resources
together, some level of service often can be provided on the reservation.
An example of interagency collaboration (and flexibility) that has
worked well is the ability to pay family members to provide care
at home. In an effort to sidestep internal barriers, agencies initiate
memoranda of understanding. These memoranda of understanding have
proven successful in providing additional technical assistance and
works to address/solve multiple agency issues at once. Having an
interagency team go to council meetings to seek input would be very
beneficial in terms of removing barriers.
Department of Education: Rehabilitation Services
The Department of Education's Office of Special Education
and Rehabilitation Services Administration oversees formula and
discretionary grant programs that help individuals with physical
or mental disabilities obtain employment and live more independently
through the provision of such supports as counseling, medical and
psychological services, job training, and other individualized services.
There are 10 federal regions with responsibility for RSA programs
across the country.
Region X staff provide oversight and monitoring of
programs in the states of Oregon, Washington, Idaho, and Alaska.
In addition, Region X staff provide oversight, mentoring, and technical
assistance to AIVRS programs across the country (of which there
are only 69, even though there are more than 562 federally recognized
tribes). By federal statute, American Indian rehabilitation programs
function comparably to the state VR agencies; however, their services
are provided to members of tribes who have disabilities and live
on or near a reservation. The AIVRS grant application process is
a competitive process; however, in keeping with their "community
culture," tribal programs often share successful grant applications
with new applicants for use as a template.
In 1996, RSA offered the assistant regional commissioner
for Region X the opportunity to develop a technical assistance and
mentoring program for all tribal VR projects. RSA provided him with
time and a limited amount of money to cover costs to visit tribal
VR programs and provide technical assistance and other support.
In the first year, with cost containment in mind, he and his wife
traveled in their motor home to 11 tribal VR programs in Montana,
South Dakota, North Dakota, and Idaho. The agenda was based on two-day
monitoring and technical assistance activities at each location.
Technical assistance was provided throughout the monitoring
activities and was expanded to include meetings at each site with
tribal council members, tribal VR staff, tribal colleges, state
VR agencies, and client assistance program staff. The tribal VR
agency directors were encouraged to invite state VR program staff
and client assistance program staff to participate in two-hour meetings.
The state agencies responded in 100 percent of the locations and
in most cases it was the first time that state and tribal VR staff
had met in the tribal communities and discussed common issues and
coordination.
Department of the Interior: Bureau of Indian Affairs,
Center for School Improvement - Special Education Programs
BIA's Office of Indian Education Programs (OIEP) receives
funds through the U.S. Department of Education to provide funding
for special education services in BIA-funded schools, of which there
are 185 in 23 states. In addition, 14 peripheral dormitories receive
BIA funding.110
BIA-OIEP awarded contract funds to 13 tribally controlled
community colleges and state universities for the specific purpose
of providing professional development opportunities for BIA-OIEP
personnel and the provision of technical assistance and training
to BIA-funded schools. This initiative is funded through the comprehensive
system of personnel development requirement under the Individuals
with Disabilities Education Act (IDEA) of 1997.
There is a general shortage of "certified" personnel
in special education to meet the existing need. Special education
is part of the continuum of services for people with disabilities.
A primary element of the BIA mission for education is to provide
and ensure that special education services are available to tribal
school-age children in order to help them achieve academically.
Professionals involved in that mission include physical therapists,
speech therapists, counselors, and others.
All BIA-funded K-12 schools have schoolwide programs
and are expected to provide an inclusive learning environment for
all children; a priori planned placement separation between children
with special education needs and other children is unacceptable.
In accordance with the mandates of IDEA, BIA-OIEP submitted a Coordinated
Services Plan for Special Education (CSP) to the U.S. Department
of Education's Office of Special Education Programs. The CSP outlines
a plan to coordinate services for children with special education
needs at the local, regional, and national levels. Providers include
vocational rehabilitation, Head Start, and tribal colleges.
Honoring Native American culture and language is an
integral part of the school curriculum. BIA-OIEP has identified
five general education goals, of which one is "students demonstrate
knowledge of language and culture to improve academic achievement."
Toward this end, BIA, through its state plan, requires schools to
deliver at least eight two-curriculum units that address culture/language.
Conversely, BIA does not require teachers in BIA-operated and/or
BIA grant/contract schools to formally demonstrate their degree
of cultural sensitivity. BIA-funded schools that are operated by
individual tribes can make a determination about such a requirement
individually.
Bureau of Indian Affairs - Division of Human Services
The Division of Human Services provides General Assistance
(GA) to tribal members who are in need.111 GA is a "secondary"
program, available as an interim support program to people who have
applied for TANF and are awaiting approval for services. It also
provides support for people who are not eligible for TANF (e.g.,
single people without children). Under contracts/compacts, tribes
operate 80-85 percent of the GA programs, with BIA regional offices
providing oversight and monitoring. Within BIA, the Individual Indian
Money accounts are the primary source of support for people with
disabilities who have tribal trust monies. Tribal social workers
or agencies evaluate and assess the needs of individuals with disabilities
and determine whether they have special needs that require a wheelchair
or other special equipment in order to hold a job or to maintain
independence. This program is a source of funds to meet those needs
and is flexible and specific to the individual's needs. The regulations
have been in place for only a year and time has not been sufficient
to assess effectiveness.
Social Security Administration
The national lead for American Indian/Alaska Native
Social Security Programs located in the Denver office was interviewed
for this study. This person is involved in a number of activities
designed to increase outreach, communication, and understanding
of Social Security Administration (SSA) programs for American Indians
and Alaska Natives.112 In March 2000, SSA convened a
national meeting to work with the tribes to identify strategies
for better delivery of SSA programs to the AI/AN population. The
Social Security Disability Insurance (SSDI) program was a major
focus of that meeting.
As a result, SSA has developed several ongoing programs
to better inform and assist American Indians and Alaska Natives.
These initiatives include an interagency agreement with IHS and
CMS. This agreement engaged the National Indian Council on Aging
in piloting outreach to Indian Nations in New Mexico, Minnesota,
and Montana. Results from the Montana Blackfeet Reservation suggest
that these outreach efforts are helpful; over 100 people participated
and 70 applications were completed on-site. SSA has also prepared
a video titled "You and Social Security Disability," in which AI/AN
people explain the SSDI program. The video was made, in part, in
response to information that AI/AN people generally do not pursue
SSDI enrollment if they receive a notice denying their initial application
(regardless of the reason for the denial).
SSA is also developing a training package on Social
Security and Medicare/Medicaid programs that will be provided to
all SSA regions. This package, the result of the pilots conducted
under the interagency agreement, will be useful in training benefit
coordinators and community health representatives serving Indian
Nations.
Administration on Aging's Native American Programs
The Administration on Aging (AOA) teams with the National
Indian Council on Aging and other Indian organizations to provide
training and technical assistance at national and regional meetings/conferences.
Regional offices also provide technical assistance and on-site technical
assistance every three years. In addition, the central office disseminates
technical assistance briefs on an ongoing basis to tribal grantees.
In the near future, AOA intends to fund an Indian contractor to
provide technical assistance to Title VI programs.
The Title VI program works very well and a substantial
comfort level has been established between federal program staff
and the tribes. In part, this is due to the program's flexibility
and the fact that AOA has consulted with and involved the tribes
in developing the programs. AOA conducts national Listening Sessions
with tribes to learn about and to identify areas for change and
improvement. For example, tribes are allowed to define "elder" for
the purposes of these programs.
In addition, AOA works closely with the National Title
VI Association and with the National Association of Area Agencies
on Aging to coordinate and collaborate on programs. AOA also administers
Title VI, Part C, which provides family caregiver support services
(the tribe must have a Part A grant to be eligible for Part C).113
There are 178 Tribal Part C grants. The program permits meals to
be delivered to people with disabilities who are not "elders."
SECTION IV
Government-to-Government Relationships: Findings
and Recommendations The major objective of
this study was to develop a foundation of knowledge and information
upon which to base specific government-to-government recommendations.
Specifically, this section is provided (1) to identify barriers
to effective federal-tribal government relationships and (2) to
develop recommendations for improvements in government-to-government
relationships. To accomplish these objectives, input was obtained
from AI/AN people with disabilities (through the TEP), tribal leaders,
tribal program administrators, and federal agency staff regarding
their perceptions of these relationships and on strategies and processes
that could be implemented to improve effective working relationships.
The comments and recommendations from these interviews were considered
and presented to two focus groups to determine if these are appropriate
and reflect the concerns in Indian Country. One focus group was
held at the National Congress of American Indians annual conference
in November 2002 and included tribal leaders and AI/AN people with
disabilities. The second focus group was held at the annual meeting
of the Consortia of Administrators for Native American Rehabilitation,
and included primarily consumers (AI/AN people with disabilities
and VR program administrators). Based upon this extensive review
by consumers, advocates, program specialists, and leaders in the
field, the following government-to-government findings and recommendations
are provided.
Findings: Barriers to Effective Government-to-Government
Relationships
The barriers to effective federal-tribal government-to-government
relationships were identified through the tribal and federal interviews.
These barriers include
- Fragmentation of services across federal
agencies and offices. Interviewees cited
the fact that while a multitude of services are available, these
programs and services are uncoordinated, and people with disabilities,
and their advocates, are required to search for assistance with
little assistance or advocacy to coordinate services. The complexity
of seeking information and completing paperwork to obtain the
full range of services required is daunting and very time-consuming.
Based on tribal and federal interviews, this factor is identified
as a major barrier for people with disabilities in Indian Country
where information and assistance to obtain these services is more
limited than in other areas of the country. There is no "single
source" within the Federal Government that tribes or tribal members
can access to secure services, funding, or better understanding
and resources to meet the needs of people with disabilities in
Indian Country.
- Lack of coordination and collaboration among
federal, state, and tribal programs.
Since there are multiple overlapping programs, it is not always
clear which government agencies have primary responsibility and
which have secondary responsibilities or are the "payer of last
resort." This is a particular problem for people with disabilities
who live in Indian Country because, according to key respondent
interviews and the review of literature, some federal and state
agencies assume that IHS, BIA, or other federal agencies with
responsibilities for AI/AN programs provide funds for all services
to AI/AN people. This same lack of clarity is particularly a problem
for federal programs that are operated through the states, since
state agencies may assume that responsibilities for people in
Indian Country are federal and that state programs do not need
to serve tribes. The result may be that no one provides funding
for some services. In addition, several reservations cross state
borders, and tribal members may seek care in more than one state,
adding to the difficulty in coordinating services and benefits.
- Lack of federal personnel knowledge and training
on the Federal Government trust responsibility to AI/AN people
and on tribal sovereignty. More attention
and priority is needed at federal program levels to ensure adequate
understanding and knowledge and to elevate the concerns of AI/AN
people with disabilities. Lack of attention by program managers
leads to an inadequate understanding of the federal trust relationship
between the U.S. government and tribal nations. Many people in
the Federal Government have limited understanding of the federal
trust responsibility to AI/AN people and/or the implications of
tribal sovereignty. As a result, some programs may be designed
inappropriately or not made available in Indian Country.
- Lack of clarity about legal enforcement options.
The U.S. Supreme Court has yet to rule on whether and to what
extent federal disability laws apply to Indian tribes. In the
absence of such a ruling, different and sometimes conflicting
opinions are being developed in lower courts. Federal laws designed
to protect people with disabilities are not always enforceable
against tribal governments because of the sovereign immunity and
sovereign status that tribal governments enjoy. This does not
mean that all other enterprises located in Indian Country are
exempt from federal disability laws, only that tribal governments
enjoy sovereign immunity. Many tribes have opted to adopt their
own ordinances and codes to protect Indian people with disabilities
within the tribal system.
- Lack of involvement of tribal leaders and
tribal members in the design, development, and implementation
of programs. Cultural and logistical
issues require that effective programs to serve people with disabilities
in Indian Country be designed and implemented to meet the unique
needs and preferences of individual tribes. Many federal and state
programs are designed from the top down and, as a result, may
be inconsistent with the preferences of tribal members or with
the structure of tribal programs.
- Fear of the unknown and unfamiliarity with
American Indians and Alaska Natives.
Federal key respondent interviews revealed that some federal agency
staff are uncomfortable working with people from other cultures
and are fearful of visiting tribal lands. This discomfort leads
them to avoid meeting and interacting with AI/AN people and making
visits to tribal areas where programs are operating. As a result,
there is inadequate support and technical assistance to implement
and effectively operate programs that serve people with disabilities
in Indian Country.
- Federal travel and budget limitations.
Federal headquarters and regional office staff members who administer
or coordinate programs serving American Indians and Alaska Natives
face limited budgets for travel. Those who want to work with tribes
to provide technical assistance, monitoring, and outreach related
to programs for people with disabilities often are not able to
obtain travel funds.
- Historical distrust of the Federal Government
by tribal leaders and members. The Federal
Government has a long history of not living up to its commitments
to the tribes. In turn, tribal leaders and tribal members are
distrustful and sometimes unwilling to work with federal agencies
to develop and implement programs, particularly those that are
developed without appropriate consultation with the tribes.
- Difficulties in tribal/state relationships.
Relationships between tribes and states
can be strained as a result of overlapping or conflicting jurisdictions
and resource issues that may have nothing to do with disabilities.
Tribes that are most successful at meeting the needs of people
with disabilities in their communities have found ways to work
with state programs. 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 must be able to access
state programs like any other citizen. Population statistics used
by states to support funding for disabilities programs will also
include AI/AN data, further adding to the justification for improved
tribal access to state resources.
- Limited consumer involvement at all levels
of policymaking. AI/AN people with disabilities
and their advocates are not being consulted and involved in a
meaningful way at all levels of tribal, state, or federal policy
development. The participation of people with disabilities in
the planning and implementation of appropriate policies, ordinances,
programs, and services could make an important and meaningful
difference for the quality of lives for people with disabilities
living in tribal communities.
- Failure to ensure that the national
mandate to eliminate discrimination against individuals with disabilities
included equal benefits for American Indians and Alaska Natives
with disabilities. 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.
Unlike Title I, Title III does not provide an explicit exemption
for tribal governments. Yet, there are limited means for enforcement
of public access requirements against tribal governments, without
a specific waiver of sovereign immunity by the tribe. Interviews
with tribes indicate that accessible transportation is still the
primary barrier for people with disabilities in Indian Country.
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. Tribes appear to be more concerned
about roads and highways in Indian Country than with the need
for public transportation systems within those same areas. Surveys
of tribes found that one-third of the tribal and federal office
buildings intended to serve the tribal communities are not accessible
to people with disabilities (AIDTAC). Tribal lands and 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. Federally recognized
Indian tribes are specifically exempt from Title I of ADA, which
prohibits discrimination against qualified individuals with disabilities
in employment, and the requirement that employers make reasonable
accommodation for employees with disabilities. This exemption
is a barrier for Indians with disabilities in Indian Country,
particularly in rural areas where tribal governments are often
the largest employer. Some tribal governments have voluntarily
complied with ADA or adopted their own codes to protect people
with disabilities from employment discrimination; however, enforcement
and local environmental changes to increase access, protections,
and services are still far from meeting the national mandate described
in ADA.
- Advocacy made difficult by multiple education
systems. The majority (90 percent) of
AI/AN children are educated by the public school systems in each
state. The remaining 10 percent of Indian children are educated
in tribally operated schools, or federally run schools of BIA.
IDEA, funded by the Department of Education, requires both public
schools and Interior-funded schools to provide children with disabilities
with a free appropriate public education based upon an Individualized
Education Program (IEP). Each child determined eligible for special
education and related services must have an IEP team. Parents
of children with disabilities in Indian Country may not be aware
of the evaluation, services, and support their children are entitled
to receive and may not know how to advocate for their children
effectively. More parent advocacy training and on-reservation
protection and advocacy services are needed for children and their
families in both public school and BIA-funded school settings.
- Limited tribal awareness and access to new
strategies that can better serve people with disabilities. Tribes
are only just beginning to take advantage of the national trend
toward increased home- and community-based services as a means
to meet long-term care needs for people with disabilities, as
opposed to institutionalized care, such as nursing homes. More
states are providing Medicaid payments to cover these costs. However,
studies show that AI/AN populations experience barriers to applying
for Medicaid and Medicare eligibility, despite the fact that these
reimbursements are representing a more and more significant part
of the IHS annual budget. Access to affordable home- and community-based
services can result in a significant quality-of-life adjustment
for people with disabilities. Just getting out of bed, bathed,
dressed, and out of the house can represent major barriers for
some people with disabilities. Yet, with the support of a personal
care attendant and other accommodations, many people with disabilities
have become valuable members of the tribal workforce.
Recommendations to Increase Effective Government-to-Government
Working Relationships
The vast majority of individuals interviewed throughout
the investigation believed it was possible to improve the effectiveness
of government-to-government working relationships, although some
of the recommendations would require additional federal and state
funds in order to implement them. The following findings and recommendations
are a result of key respondent interviews, input from people with
disabilities in tribal communities, findings from previous research,
and feedback from focus groups.
Finding 1. Consultation:
The majority of federal agency representatives stressed that programs
should be designed and developed by the tribal communities, rather
than top-down from the bureaucracy. Flexibility in program design
and implementation was seen to be critical to the success of federally
funded programs for AI/AN people with disabilities. Executive Order
#13175 dated November 6, 2000, states that it will ".establish regular
and meaningful consultation and collaboration with tribal officials
in the development of federal policies that have tribal implications,
to strengthen the U.S. government-to-government relationships with
Indian tribes, and to reduce the imposition of unfunded mandates
upon Indian tribes.." This Executive Order was reinforced by a letter
from Alberto R. Gonzales, Counsel to the President, to Congressman
Frank Pellone, dated June 19, 2002, in which Mr. Gonzales states
that "In early 2001, the Bush Administration reviewed the Executive
Order (13175) and found it to be consistent with the views of the
Administration on tribal consultation and coordination. Currently,
the Administration is working to see that the Order is implemented.."
With regard to addressing issues of disabilities in tribal communities,
this consultation has not happened in a comprehensive or meaningful
way.
RECOMMENDATION 1.1: Formal government-to-government
consultation needs to be initiated by the Federal Government in
a way that will coordinate all the various federal agencies involved
in issues of disabilities and tribal governments, and that involves
tribal governments in the planning for these consultation sessions.
The President's directive should identify a lead agency, such as
the Department of Education, and require coordination among all
the various federal agencies involved in issues of disability and
tribal governments. It should also require collaboration with tribal
governments in a manner that involves appropriate representatives
in planning for the consultation sessions.
RECOMMENDATION 1.2: The President's directive needs
to clarify that existing tribal consultation plans should be reviewed
at the agency level to ensure that each federal department identifies
strategies for increasing meaningful discussions. The review should
include plans for consultation around issues of disabilities prioritized
in Indian Country and for expanding the participation of AI/AN people
with disabilities in discussions and consultations.
Finding 2. Cultural competence,
training, and orientation: Tribal and federal/state interviews
revealed the importance of cultural competence, trust-building,
and outreach when addressing the issues facing people with disabilities
living in Indian Country. The improved understanding of tribal culture
and of the federal responsibilities to American Indians and Alaska
Natives is critical to developing positive working relationships
that lead to effective programs. As one interviewee noted, "concerted,
continuous efforts that include both initial outreach/consultation,
and establishing a track record of 'follow through' is essential
to developing a positive working relationship and to gain the trust
of the tribes." National AI/AN organizations have established relationships
with tribes and tribal leaders and can help overcome the historical
distrust of the Federal Government. AI/AN organizations also bring
to partnership efforts the depth of understanding of AI/AN culture
and tribal structure that will facilitate and increase federal agencies'
understanding and responsiveness to these issues.
RECOMMENDATION 2.1: Pursuant to the Executive Order
on tribal consultations, a mandated, formal, and sustained education
and orientation program that increases face-to-face interaction
between federal officials and tribal officials should be implemented.
The President's directive should require cabinet-level heads of
federal agencies to ensure that orientation programs for all federal
officials who administer programs for tribes or tribal members will
be required by a certain date. Federal staff should plan to communicate
and meet directly with tribal leaders, tribal program staff, and
tribal people with disabilities on a regular basis. This ongoing
contact will facilitate program flexibility and provide technical
assistance to help tribal programs increase effectiveness. The more
frequent exposure of federal staff to tribal culture will also increase
the comfort level of federal staff and strengthen positive working
relationships. This exposure to tribal culture can occur effectively
and in meaningful ways if sufficient travel funds and allocation
of time are provided for tribal community visits. Such interaction
should be mandated and monitored pursuant to the Executive Order.
RECOMMENDATION 2.2: Federal agency staff should be
required to receive education and training about tribal governments
and programs, the federal trust responsibility to tribes, an orientation
on AI/AN cultures, and training on the unique challenges and opportunities
faced by people with disabilities in Indian Country, if assigned
to administer grants or contracts in AI/AN communities.
RECOMMENDATION 2.3: Consumer involvement must be increased
substantially during the development of programs for people with
disabilities in Indian Country. Tribal programs, state agencies,
and federal programs must provide for meaningful consultation, involvement,
and active leadership of American Indians and Alaska Natives with
disabilities in addressing all needs assessments, planning, program
implementation, and evaluation regarding the issues related to people
with disabilities. To provide for effective consumer involvement,
program budgets must include funding for travel and other accommodations.
RECOMMENDATION 2.4: Federal agencies should develop
strong partnerships with existing national AI/AN advocacy organizations
in order to develop culturally responsive strategies and approaches,
to better address disabilities issues in Indian Country, and to
conduct increased and more effective outreach and information dissemination
campaigns. Specifically, agencies such as the Departments of Education,
Interior, Health and Human Services, and Justice should convene
an initial face-to-face working session and follow-up dialogue through
scheduled telephone/video conferences. Joint strategy planning should
be planned through the conferences with organizations such as the
National Indian Health Board, the National Congress of American
Indians, the Intertribal Deaf Council, the Consortia of Administrators
for Native American Rehabilitation, and other grassroots entities.
Finding 3. Coordination and collaboration:
The lack of coordination and collaboration among the various federal,
state, and tribal programs charged with the responsibility of addressing
the needs of people with disabilities is a significant barrier to
improved services. There is a need to clarify responsibilities pertaining
to the funding of services for people with disabilities in Indian
Country among federal agencies and between federal programs and
federally funded state-run programs.
RECOMMENDATION 3.1: Co-lead agencies, such as the U.S.
Departments of Education and Health and Human Services, must be
authorized to carry out the federal trust responsibility to provide
culturally responsive information that raises awareness about protections
and assistance to people with disabilities in Indian communities.
Improved dissemination of information about programs that provide
services to people with disabilities in Indian Country must be accomplished,
and this information must be readily available to tribes, other
federal agencies and staff, and state agencies and staff. This information
must include clear descriptions of services, regulations, and responsibilities
and could take the form of regularly issued newsletters, bulletins,
a frequently updated Web site, or multiple communication media.
Finding 4. Recruitment and hiring
of AI/AN professionals and advocates: Federal agencies
do not demonstrate effective efforts to recruit, hire, and retain
AI/AN staff within federally funded disability programs. Interviewees
pointed out that federal data shows few AI/AN staff employed in
the Federal Government, even in some agencies and programs that
directly serve primarily AI/AN people. This fact may contribute
to the finding that in some cases federal staff do not feel comfortable
or competent when dealing with Native issues, including issues affecting
AI/AN people with disabilities and their families.
RECOMMENDATION 4.1: The Federal Government must broaden
its outreach efforts to increase the recruitment and hiring of American
Indians and Alaska Natives. Specifically, the U.S. Department of
Education's Rehabilitation Services Administration (RSA) should
redirect a percentage of its funds for education grants to tribal
colleges and universities for enhancing vocational rehabilitation
studies. The Rehabilitation Act, Title III, Professional Development
and Special Projects and Demonstrations provides RSA with the opportunity
for expanding efforts to improve conditions in tribal communities.
In addition to its responsibility to oversee grants and to coordinate
the vocational rehabilitation program and policy issues for American
Indians and Alaska Natives within its agency headquarters and among
its regional offices, RSA needs to recruit and hire people with
extensive authentic experience both living in Indian Country and
being actively involved with various types of AI/AN community affairs
and cultural traditions as well as experience and knowledge about
people with disabilities.
Finding 5. Application of federal
disability laws: The degree to which Indian tribes are
subject to federal disability laws is unclear within Indian Country.
The Federal Government has a government-to-government responsibility
to better inform its agencies and tribal governments with regard
to the extent to which existing federal disability laws apply to
tribal governments. This project looked at issues related to people
with disabilities on "tribal lands," yet the legal jurisdictional
issues have less to do with lands than with the sovereign status
of tribal governments and the sovereign immunity of tribes. While
rights and protections are provided in federal disability law, there
is a lack in enforcement or lack of remedy for Indians with disabilities
within Indian Country when those violations involve tribal governments
or tribal enterprises.
RECOMMENDATION 5.1: In consultation with Indian tribes
and AI/AN people with disabilities and their advocacy organizations,
the Department of Justice, in cooperation with the Department of
the Interior and with the participation of other relevant federal
agencies, should immediately conduct an in-depth review of federal
disability law as it applies to tribal governments, tribal enterprises,
and people with disabilities who reside within Indian Country. A
written report on findings of clarification should be provided to
all tribes, Indian organizations, and disability advocate organizations.
RECOMMENDATION 5.2: The Department of Justice Civil
Rights Division, in consultation with AI/AN people with disabilities
and their advocate organizations, should convene a series of regional
meetings to hear issues related to the application and enforcement
of federal disability laws in Indian Country from both tribal and
consumer perspectives. The Department of Justice should conclude
these regional meetings with a report on findings and recommendations
to be disseminated throughout Indian Country and among other federal
agencies.
Finding 6. Access to Independent
Living Centers: AI/AN people are disproportionately underserved
by independent living services. American Indian populations have
the highest disability rate of any racial group in the United States
and the least access to resources. As established under Title VII
of the Rehabilitation Act of 1973, independent living services are
to be provided to all people regardless of race, age, gender, or
location. Services include information and referral; independent
living skills training; peer counseling; and individual-based systems
advocacy. Yet, only 3 of 350 federally funded independent living
centers (ILCs) target services specifically to meet the needs of
AI/AN populations. Expanding ILC services would represent the vital
first step toward employment of people with disabilities.
RECOMMENDATION 6.1: The U.S. Department of Education
RSA should provide a 25 percent set-aside of all funds available
for ILCs. The funds should be allocated on a competitive basis for
tribal communities to develop and provide ILCs for people with disabilities
living in Indian communities. RSA should work to ensure that ILCs
work cooperatively with all American Indian vocational rehabilitation
services to ensure that appropriate independent living skills are
developed before vocational rehabilitation occurs.
Finding 7. Access to vocational
rehabilitation services: Tribal vocational rehabilitation
services represent a potential starting point for increasing outreach
and targeted services for AI/AN people with disabilities across
Indian Country. Section 121 of the Rehabilitation Act of 1973 provides
grants to governing bodies of Indian tribes located on federal and
state reservations to assist American Indians and Alaska Natives
with disabilities with vocational rehabilitation and employment
assistance. Section 121 funding has been provided to tribes on a
competitive basis, with limited opportunities to expand the total
number of participating tribes. Currently, only 67 tribes out of
a total of 560 federally recognized tribes receive federal funding
from RSA. Many more communities warrant funding, and of those that
receive funding, much more training, orientation, and technical
assistance are needed to improve services for people with disabilities.
While American Indian Vocational Rehabilitation Services (AIVRS)
programs have matured substantially, advancing their concerns through
national meetings and sharing, additional funding stability and
capacity building are needed.
RECOMMENDATION 7.1: The RSA Commissioner and the Secretary
of the Department of Education need to agree to set aside the maximum
amount in funding for Section 121 AIVRS programs allowable under
law.
RECOMMENDATION 7.2: Future amendments to the Rehabilitation
Act, which would allow for a substantial increase in funding set-aside
and an allocation methodology developed in consultation with tribes
to provide vocational rehabilitative support for all 560 federally
recognized tribes in the United States, should be examined. There
should be a planned expansion schedule of the AIVRS programs, increasing
the amount of funds allotted each year.
RECOMMENDATION 7.3: In addition to funding tribal AIVRS
programs, RSA should set aside funding for an ongoing national training
and technical assistance project and to support field staff training
and monitoring of the program.
RECOMMENDATION 7.4: RSA should revise its administration
of AIVRS projects to show improvement in ways that promote the achievement
of stability and sustainability in tribal communities. Once a program
is funded, AIVRS should continue the funding based on objective
criteria and indicators for program monitoring, evaluation, and
appropriate technical assistance rather than requiring all to compete
for continuation every five years. This new approach is similar
to the funding process that supports the ILCs in section 722(e)(1)
in the Rehabilitation Act. Each AIVRS project should receive at
least a cost-of-living increase as per the Consumer Product Index
each year, similar to programs under Titles I and VII. The President
and Congress should develop legislative amendments to the statute
to provide for continued funding of all the programs meeting performance
standards. NCD should make this recommendation to the President
and Congress in its annual report.
RECOMMENDATION 7.5: RSA should work closely with states
to ensure improved results of efforts to comply with the provisions
of the Rehabilitation Act in Indian Country. This includes consultation
with tribes and the inclusion of tribal members with disabilities
in the development of state plans and commissions on rehabilitation.
Results on a state-by-state basis should be reported to the public
when each state plan is approved at the federal level.
RECOMMENDATION 7.6: Federal and tribal vocational rehabilitation
programs should look more creatively at the possibilities of expanding
employment of people with disabilities in Indian Country, including
promoting the definition of employment outcome as stated in the
Rehabilitation Act of 1973, as amended in 1998; to wit:
Section 7: Definitions (11) "The term 'employment
outcome' means, with respect to an individual-(A) entering or
retaining full-time or, if appropriate, part-time competitive
employment in the integrated labor market; (B) satisfying the
vocational outcome of supported employment; or (C) satisfying
any other vocational outcome the Secretary may determine to be
appropriate (including satisfying the vocational outcome of self-employment,
telecommuting, or business ownership, in a manner consistent with
this Act." (emphasis added)
Finding 8. Access to home- and community-based
services: AI/AN tribes rely upon the U.S. Indian Health Service
(IHS) to meet their health care needs. These resources are drastically
underfunded when compared with the average annual expenditure for
all U.S. citizens or even when compared with annual expenditures
for Medicaid recipients. For people with disabilities living in
tribal communities, this lack in health care resources can mean
the difference between life or death, independence or confinement.
More and more tribal health programs are beginning to bill Medicaid
and Medicare for services provided to eligible patients in tribal
clinics. Opportunities to establish home- and community-based services
(HCBS) for people with disabilities in tribal communities, financed
through Medicaid or Medicare reimbursement, are developing.
RECOMMENDATION 8.1: IHS and the Centers for Medicare
and Medicaid Services (CMS) should develop an initiative, in consultation
with tribal governments, to expand training and technical assistance
at the local level. They must also build HCBS in tribal communities
to better serve people with disabilities. These training and technical
assistance sessions should provide practical advice, manuals, toolkits,
or other mechanisms to orient tribal health providers in HCBS, funding
or reimbursement opportunities, and strategies for including people
with disabilities in the planning and design of these services.
IHS and CMS should consult with AI/AN people with disabilities while
developing and designing these training and technical assistance
tools. In addition, regional or state-based meetings should be encouraged
by IHS and CMS so that tribes and states can work together to plan
and develop the services appropriate for each community.
RECOMMENDATION 8.2: IHS, Social Security Administration
(SSA), and CMS should provide training for consumers, their families,
and their advocates in Indian Country concerning the resources available
to support improved health services and how to access appropriate
long-term care services.
Finding 9. Social Security Administration
liaison: One of the most significant barriers reported by
tribal interviews was the rigidity and difficulty in working with
SSA to secure either Supplemental Security Income for people with
disabilities or Social Security Disability Insurance. There is significant
dissatisfaction at the local tribal level with regard to administrative
barriers that prevent access to these benefits. In many cases, these
barriers could be based on a lack of cultural sensitivity and the
absence of an effective Indian outreach approach by the agency.
RECOMMENDATION 9.1: The President should ensure that
an Indian Desk is established at the headquarters level of SSA,
the Department of Labor, and the Department of Education's RSA and
Office of Special Education Programs specifically addressing needs
of AI/AN people with disabilities.
RECOMMENDATION 9.2: An Indian liaison position should
be established and filled in each of the federal SSA regional offices,
providing outreach, technical assistance, and advocacy for the tribes
and urban Indian organizations located in each of those regions.
The positions should be filled by otherwise qualified people with
the most extensive authentic experience living in Indian Country
and active involvement with various types of AI/AN tribal community
affairs and cultural traditions, including practical experiences
and knowledge about people with disabilities.
Finding 10. Access to public transportation:
Transportation was identified by our tribal interviews as
one of the leading barriers for people with disabilities residing
in Indian Country. The lack of accessible transportation for people
with disabilities affects all other aspects of life, including establishing
an independent living environment; attending school; and securing
employment, housing, health care, and job training. The Federal
Transportation Administration represents the largest source of funding
in the United States for urban and rural transportation systems,
yet in 1995 only 19 out of 560 tribes were receiving assistance
through this resource. According to the Association of Programs
for Rural Independent Living report in 1999, only 5 percent of transportation
dollars were allocated to serve 27 percent of the population that
lives in rural areas. The problem appears to be even more severe
in tribal communities.
RECOMMENDATION 10.1: The Department of Transportation
(DOT), in collaboration with other federal agencies, should set
aside a more appropriate percentage of its funding to ensure that
public transportation options are available in rural tribal communities.
DOT should engage in a tribal consultation process, including discussions
with tribal leaders and Indian people with disabilities, to develop
specific strategies to increase accessible public transportation
systems in tribal communities.
Finding 11. Employment opportunities:
People with disabilities represent a valuable and underutilized
asset for tribal communities seeking to develop a reliable and capable
workforce. More education and awareness are needed among tribal
officials and tribal program administrators to recruit, hire, and
maintain people with disabilities in the tribal workforce.
RECOMMENDATION 11.1: Tribal governments and tribal
programs serving people with disabilities should engage community
and employer awareness programs in the development of employment
opportunities for people with disabilities.
RECOMMENDATION 11.2: Tribal community colleges or other
local educational institutions serving tribal communities should
develop targeted outreach for people with disabilities in tribal
communities to access education, training, and skills development
to become substantial contributors to the tribal workforce.
RECOMMENDATION 11.3: Congress, with funding through
the Department of Education, should provide the resources necessary
to bring assistive technology to Indian Country that will increase
the ability of people with disabilities to participate in daily
activities, employment, and tribal government.
Finding 12. Public facilities access:
Previous research has found that one-third of tribal and federal
facilities located in Indian Country are not accessible to people
with disabilities. This is a hardship for AI/AN people with disabilities
residing in Indian Country, and a disincentive to other people with
disabilities visiting or doing business in Indian Country. Tribal
interviewees report that a major obstacle for tribes is the cost
associated with retrofitting facilities to meet ADA accessibility
requirements.
RECOMMENDATION 12.1: Congress, in the fulfillment of
its federal trust responsibility and pursuant to the goals of ADA,
should provide special funding for tribes to construct or retrofit
tribal facilities and local federal infrastructure to maximize accessibility
for all types of disabilities.
Finding 13. State and tribal relations:
One of the major barriers preventing the expansion of services
specifically targeted to meet the needs of people with disabilities
in tribal communities is the tenuous relationship that has historically
existed between tribal and state governments. Many of the programs
and services needed to create a supportive network in tribal communities
are administered through state agencies. Even though these programs
are often federally funded programs, they are administered by the
state, following a state plan and under the supervision of a state
commission. While states have begun to recruit Indian consumer representatives
to serve on the state councils or commissions, more collaboration
is needed to leverage additional resources and services for Indians
with disabilities in tribal communities.
RECOMMENDATION 13.1: The U.S. Department of Education's
National Institute on Disability and Rehabilitation Research, RSA,
and Office of Special Education Programs should provide a series
of forums for dialogue in Indian Country. Therein, regional staff,
state staff, and tribal members can discuss opportunities to work
together to create partnerships for better serving and supporting
the empowerment of people with disabilities in tribal communities.
Participants should identify strategies to ensure all citizens with
disabilities are provided access to the same level of services,
through service agreements and other cooperative arrangements.
Finding 14. Federal information
dissemination: As articulated by Coria La Fontaine, a member
of this project's TEP, "there are a lot of hidden disabilities and
we need to make people aware of this.." AI/AN communities lack adequate
resources to help raise awareness about disabilities, programs,
protections, and services and to implement needed new programs and
services for people with disabilities; they need the partnership,
assistance, and funding of state and federal agencies. Any federally
funded research should produce practical applications that can be
implemented in Indian communities to improve the conditions of the
people with disabilities studied. Considerable enthusiasm and anticipation
have been generated by this NCD project in Indian Country, specifically
with regard to the development of a culturally appropriate, user-friendly
Toolkit for AI/AN communities.
RECOMMENDATION 14.1: Federal agencies that serve AI/AN
communities, such as the U.S. Departments of Education, Interior,
Justice, and Health and Human Services, should make a continuing
and concerted effort to identify information appropriate for dissemination
to those communities and make it readily available. Federal agencies
should develop and implement strategies for culturally sensitive
outreach and contacts with AI/AN tribes and individuals with disabilities.
The NCD Toolkit developed by this project should serve as a resource
and guide to federal agencies in their outreach efforts.
Finding 15. National gathering of
key stakeholders: One theme that came through very strongly
from discussions with federal and tribal staff was the need to "bring
people together." Federal, state, and tribal people who get together
to talk through common issues and problems will learn from each
other and develop relationships that will provide a foundation for
working together to improve programs and resolve problems facing
people with disabilities. Organizations have emerged to support
the self-determination and advocacy efforts of people with disabilities
in AI/AN communities across the United States. It is important that
these organizations have the support and encouragement from federal
funding sources to collaborate and convene, in partnership with
organizations representing tribal governments, various forums to
further address the issues raised in this report.
RECOMMENDATION 15.1: A federal initiative, with funding
from multiple agencies, including the U.S. Departments of Education,
Health and Human Services, Justice, Transportation, and Interior,
should support the planning, coordination, and implementation of
a National Summit on American Indians with Disabilities, gathering
organizations such as the American Indian Disability Technical Assistance
Center, American Indian Rehabilitation Research and Training Center,
Consortia of Administrators for Rehabilitation, Intertribal Deaf
Council, Commission for the Blind, and Native American Protection
and Advocacy, in cooperation with organizations such as the National
Congress of American Indians, National Indian Child Welfare Association,
National Council on Indian Aging, and National Indian Health Board.
The purposes of this summit would be to
- Provide education and awareness on disability issues
- Provide education and awareness on disability law
and its application and opportunities for tribal initiatives in
tribal communities
- Provide a clearinghouse of information available
to tribes
- Establish a legislative and federal policy agenda
- Interact with representatives of federal and state
agencies
- Spotlight "best practices" in Indian Country
- Develop strategies for national advocacy
RECOMMENDATION 15.2: An effective summit must include
substantial participation by AI/AN people with disabilities. Any
and all federal or tribal support for this summit should include
a percentage of the budget allocated for "consumer participation,"
so that Indian people with disabilities can participate en masse.
RECOMMENDATION 15.3: This summit should not be a one-time
event, but should be a recurring gathering, meeting at a minimum
of every two years. This frequency is important to sustain focused
momentum and to ensure continued support for new leadership within
the field of AI/AN disabilities. These summits should be repeated
every two years in various regions across the United States under
the sponsorship of multiple federal agencies, including the Departments
of Education, Labor, Health and Human Services, Justice, and Interior.
SECTION V
Conclusion AI/AN people with disabilities
are among the most underserved and neglected populations in the
nation. The high level of poverty among AI/AN populations; limited
federal funding available for tribal communities for housing, education,
or health care; and limited access to important infrastructure such
as roads, sidewalks, and public transportation create a difficult
and challenging environment for people with disabilities. Added
to these socioeconomic challenges is the lack of clarity in Indian
Country regarding the enforcement of federal disability laws that
impact people with disabilities. Without the enthusiastic participation
of tribal communities and tribal, state, and Federal Government
representatives in closing the gaps between appropriate services
and support received by the majority population and people from
tribal communities, the level of disparity would be even greater.
Yet, underserved and unserved people with disabilities among AI/AN
populations face an uncertain and bleak future in terms of obtaining
equal opportunities, independence, inclusion, and freedom from discrimination.
Effective collaboration between sovereign governments is key to
successfully addressing the issues and needs of tribal members with
disabilities and descendants living in Indian Country. Emphasis
must be placed on the building of relationships between all stakeholders.
American Indians and Alaska Natives with disabilities must be invited
to the table in key conversations regarding policies, initiatives,
program development, and resource allocation.
Where do we go from here? In the spirit of self-determination,
Andrea Siow (Hopi Nation), TEP member, stated, "By getting the word
out that people with disabilities are not helpless, we can create
awareness and improve things..It is up to us to find our path.."
Self-determination is fundamental not only from the perspective
of tribal government, but from the view of the individual tribal
member with the human need for opportunity, inclusion, support,
access, and freedom to chart one's own course. This nation's mandate
to eliminate discrimination against individuals with disabilities
has thus far failed to appropriately address the inclusion of AI/AN
communities. For people with disabilities in these communities,
the freedom to fulfill their dreams, access economic independence,
and meaningfully participate in their tribal community may rest
in the willingness of tribal, state, and federal governments to
work together, cooperatively and effectively. Ultimately, this will
need to be accomplished in ways that will achieve the Congressional
intent of disability laws and will fully respect this nation's historic
legal obligations to tribal governments.
Collectively, the traditional leaders can look to
tribal people with disabilities as key among the stakeholders who
can change the current environment in ways to reach all unserved
and underserved people across this great nation. Many small tribal
nations, a good deal of which do not possess the adequate economic
base needed to fully accommodate, protect the rights, and serve
the unmet need of tribal members with disabilities, comprise the
majority of Indian Country. Federal, regional, and state program
leaders must seriously consider and commit to expanding the necessary
financial resources. The time for these leaders to establish opportunities
for dialogue and begin building collaborative working relationships
with tribal governments and people with disabilities is now. In
the words of Steven "Corky" West (Oneida Nation), "the consumers
are the leadership. Learn from the consumers."
APPENDIX
A
The Technical Expert Panel
Azure, Mark
Tsimshian/Hunkpapa Lakota
Intertribal Deaf Council
Consumer
Clay, Julie Anna, M.P.H.
Omaha Tribe
Training and Dissemination Coordinator
American Indian Rehabilitation Research and Training Center (AIRRTC)
Consumer
Davis-Wheeler, Julia
Nez Perce
Tribal Leader
Nez Perce Tribal Council
Chair, National Indian Health Board
Fowler, LaDonna
Turtle Mountain Chippewa Cree/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
Francis, Joanne
Akwesasne Nation (Mohawk)
International Disability Consultant
Consumer
Garcia, Joseph
Prairie Band of Potawatomi
Board Member, American Indian Disability Technical Assistance Center
Student, Salish Kootenai College
Consumer
LaFontaine, Cordia
Consumer
Locust, Carol
Eastern Band Cherokee
Indian Health Services Health Consultant/
Cultural Sensitivity Trainer and Consultant
Consumer
Lucero, Danny
Navajo/Apache Nations
Vice President, Intertribal Deaf Council
Gallaudet University
Consumer
Miles, David J.
Nez Perce Tribe
Director, Nez Perce Vocational Rehabilitation Services
Board Member, Idaho State Independent Living Council
Board Member, Idaho State Rehabilitation Council
Paris, Damara
Cherokee
President of the Intertribal Deaf Council
Consumer
Siow, Andrea
Hopi Nation
Miss Hopi Nation
Consumer
Smith, H. Sally
Tribal Leader
Executive Committee, Alaska Native Health Board
Executive Committee, National Indian Health Board
Williams, Raho
Navajo Nation
Independent Living Specialist
San Juan Center for Independence
Consumer
Windy Boy, Alvin
Chippewa-Cree
Tribal Leader
Rocky Boy Reservation
APPENDIX
B
Interview Guide for Discussions with Federal/State
Agency Staff
Interviewer will briefly summarize the study and objectives
of the interview and discuss/answer any questions that the interviewer
may have.
- What are the responsibilities of your agency/office
with respect to providing funding, services, and/or protections
to people with disabilities in Indian Country?
- How do you and others in your office work with
tribal governments? particularly on issues affecting people with
disabilities?
- Are these government-to-government relationships
well established? What are the processes for working with tribal
governments?
- Do these processes work well? What are some of
the factors that contribute to the effectiveness of your programs,
policies, and procedures? Can you provide examples of effective
processes?
- Do you have examples/evidence of "promising practices"
(within your agency or others of which you are aware) that seem
to work well to benefit people with disabilities in Indian Country?
- What types of "outreach" efforts does your agency
have in place to improve services and programs to American Indians/Alaska
Natives in Indian Country? nontribal areas? for people from any
other diverse cultural/ethnic/racial groups?
- Within your agency, are any programs, training,
or policies in place to address cultural competency in implementing/monitoring/enforcing
laws and programs and services?
- Are you aware of any problems or difficulties
that have occurred between your office and tribal governments,
when the processes in place have not worked well? Can you provide
examples?
- What are the barriers/difficulties you or others
in your office have encountered in developing and maintaining
effective government-to-government relationships? examples?
- Are you aware of any innovative approaches or
strategies (within your agency or others) that have helped to
develop and maintain effective government-to-government relationships?
- What changes would you like to see made (within
your agency or others) that would result in improved services
and programs to assist people with disabilities who live in Indian
Country? to assist American Indian/Alaska Native people with disabilities,
wherever they may live?
- What suggestions or recommendations do you have
that would improve communication and collaboration among federal/state/tribal
governments on issues that would improve support and services
to people with disabilities in Indian Country?
APPENDIX C
Interview Guide for Discussions with Tribal
Programs
1. Does your tribal government have a law or resolution
that prohibits discrimination against people with disabilities and
requires equal opportunities for people with disabilities?
If no: How does
your tribe protect rights and opportunities for people with disabilities?
If yes: What were the key elements or factors that
convinced this tribe to develop tribal laws, ordinances, or codes
to protect and meet the needs of people with disabilities?
2. How does your
tribe address support services for persons with disabilities and
their families, such as home support programs, respite coverage
for parents, personal care attendants, and other caregivers?
3. What are the major barriers for people with disabilities
on your reservation?
4. Describe how people with disabilities access health
care in your tribal community. Who are the health providers most
likely to see and understand the needs of people with disabilities?
5. What are the barriers to health care experienced
by people with disabilities in your tribal community?
6. Are children with disabilities treated differently
in your school systems? Please describe.
7. What services (supported employment, transportation
assistance, job coach) for employment for people with disabilities
come from inside your tribe? outside your tribe?
APPENDIX D
Case Studies of Three Tribal Communities
Introduction
The following case studies provide additional insight
into the approaches used by three tribal communities and a federal
region-Confederated Salish and Kootenai Tribes, Hopi Nation, Oneida
Nation, and federal Region X-to address the needs of people with
disabilities on tribal lands. The three communities were selected
from the 10 tribes interviewed for this study. They were selected
because their level of tribal government commitment to taking actions
and changing the attitudes and environment of tribal communities
with regard to providing improved access and services for people
with disabilities stands out. The results for people with disabilities
have been improved services to individuals and families and enhanced
support for self-determination efforts. The case studies are summarized
below:
Confederated Salish and Kootenai Tribes
The Flathead Reservation, home of the Confederated
Salish and Kootenai Tribes (CSKT) in western Montana, spans 1.5
million acres in seven communities.114 The reservation
is largely divided between tribal and non-Indian ownership. The
local county population is approximately 22,000-and of that population,
only 4,000 are tribal members. This means that the CSKT are the
minority on their own reservation. This creates great challenges
when faced with an environment of racial discrimination. In the
town of Ronan, 51 percent of the students are American Indian, and
only 4 to 5 percent actually graduate from high school. In addition
to tribal members and non-Indian landowners, the Flathead Reservation
is home to a high count of 2,600 American Indians from other tribes.
The local tribal college draws many other Indian people into the
territory.
There is a 41 percent unemployment rate year-round,
with winter having the highest rate. CSKT is the major employer
on the reservation, employing approximately 1,200 people in the
summer months and about 700 in the winter months. There are many
who also depend on the timber industry, which has been difficult
since the fires in 2000; tribal revenue is down since then. Other
employment opportunities include farm work, odd jobs, and small
businesses.
CSKT Collaborative Programming
Since the late 1990s, the only referrals for vocational
rehabilitation came from other tribal departments. Staff came to
realize that many Indian people do not see their disability as an
"issue." It was part of their journey in life, and a person needed
to learn how to deal with it. The term "disability" is not in either
the Salish or Kootenai languages. Staff had to explain to people
that their disability met the criteria to qualify them to receive
disability services. The positive results associated with the vocational
rehabilitation program at CSKT may be attributed to three key elements.
The first is people who know the systems and services that can assist
people with disabilities. The second key element is awareness of
different perceptions of the term "disability." The third key element
is outreach and coordination across several programs to ensure services
and people are connected.
The vocational rehabilitation program is 17 years
old. It used to be based in the tribal college and was known as
a program for college students. CSKT removed it from the college
in 1998 to provide services to the whole reservation. The way it
carries out a "one-stop shop" model is the program's strength. A
strong relationship with department heads led to building programs
simultaneously and providing access to many other programs that
serve consumers. Program leaders report that they recognize the
benefits of knowing about various grants and programs, and of building
positive working relationship. The vocational rehabilitation program
serves the entire reservation, making collaboration critical to
consumer success. There are satellite offices in Mission, Ronan,
and Polson. The number of people served by the vocational rehabilitation
program range from 80 to 110.
Benefits are coordinated to expand the services for
tribal members with disabilities through the CSKT One-stop Shop.
How does this work? As one example, a family served by the tribal
Temporary Assistance for Needy Families (TANF) program would have
an Individualized Family Plan for Employment developed and then
utilized to fulfill the work requirements for TANF. The consumer
would obtain cash assistance from TANF for living expenses and vocational
rehabilitation funds for specific training needs only. The CSKT
vocational rehabilitation and Adult Basic Education staff members
work together frequently to help people get their general education
diplomas and obtain learning disability testing. Vocational rehabilitation
staff members also ensure that the consumer is having basic needs
met through food stamp and commodity services. The food stamp office
is next door to the vocational rehabilitation office. Childcare
is provided through a block grant to provide daycare services during
work-related activities for parents. Vocational rehabilitation staff
members also work closely with a job specialist, the tribal Department
of Human Resources, and On-the-Job Training to secure job placements
for consumers with disabilities.
CSKT tribal staff members for different programs were
once described as a lot more territorial-working alone rather than
collaborating across programs-until the CSKT Tribal Council placed
everybody in one department. Public Law 102-477-commonly called
477-provides Indian tribes with the option to integrate their federal
employment, training, and childcare funds into one consolidated
budget and program. The 477 option also allows tribes to consolidate
reporting requirements for these various federal programs, reducing
paperwork and streamlining services. Although the CSKT vocational
rehabilitation and the Women, Infant, and Children's programs are
not included in the 477 contract, these programs are coordinated
with the other employment, training, and childcare opportunities.
A positive outcome of coordinating these services is that people
with disabilities can access assistance through a seamless program,
resulting in improved and more comprehensive services.
CSKT Transportation Services
In addition to the collaborative service delivery,
there has been opportunity to focus on a number of barriers facing
people with disabilities. Program staff members developed ways for
transportation resources to connect tribal members to employment
opportunities. Transportation has been identified as a leading barrier
for the CSKT. Remoteness and isolation are primary barriers for
the 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. Transportation
needs were integrated into vocational rehabilitation, elderly, and
independent living grant proposals. In this way, a resolution to
the barrier became part of the process of strengthening existing
services. The transportation program uses a number of approaches,
yet recognizes challenges to the implementation of the program.
Use of a transportation voucher system is a limited option because
of the lack of availability of licensed drivers with automobile
insurance and the fact that there are few service providers to receive
the voucher. In an attempt to find a solution to this problem, workshops
are provided to help people get their driver's license. An additional
barrier is that the closest cities in which to obtain driver's licensing
are Missoula and Kalispell, and they are both about one hour away.
The CSKT co-authored a grant with Missoula's Rural Transportation
Department, If the reservation has buses, they can link at Missoula.
The significant impact of the transportation problem
has led to seeking a more long-term resolution. Using accessible
buses, vans, and cars, the vocational rehabilitation staff members
are developing a combination fixed-route dispatch service in collaboration
with the Salish Kootenai College. The CSKT's approach to meeting
the transportation need has been to integrate services and to seek
technical assistance through a network of partnering agencies. By
taking a two-pronged approach, the tribe is able to offer temporary
transportation services to supplement vocational rehabilitation,
elderly services, and services for individuals with disabilities
while working to develop a more comprehensive service that is tailored
to its community's specific need.
CSKT Education
Many CSKT members have not received a lot of education.
This is apparent when testing shows they do not have the knowledge
to pass tests. A vocational rehabilitation leader Ms. Arlene Templer
(CKST) has begun work with the schools in all six districts on the
reservation. The local Bureau of Indian Affairs school provides-and
pays for-disability services to the children attending. In working
with the other school districts, the vocational rehabilitation leader
assists with development of an Individualized Education Program
for students beginning at age 14. She goes to the schools as a tribal
and vocational rehabilitation representative and tells students
about resources available to them as Indian people. She provides
them with transition kits (packets) that include information on
a variety of different resources and programs, such as the tribal
Department of Human Resource Development, Salish Kootenai College,
and Job Corps, and a letter from the tribal chairman encouraging
students to finish their education.
CSKT and State-Level Collaboration
Ms. Arlene Templer, the vocational rehabilitation
leader whose activities were described above, now chairs the Montana
State Rehabilitation Council after a year as vice chair. She stays
up-to-date on grants made to the state and develops proposals for
grants to the tribes. She is uniquely positioned to know about state
and federal grant dollars. The Section 121 regulations mandate tribal
representation on state rehabilitation councils. The State of Montana
conducts consumer surveys to determine satisfaction with state programs
and services. Along this line, Ms. Templer has asked the state to
survey a tribal program and suggested CSKT as the pilot program.
She indicated that she feels comfortable enough with the program
to recommend it. Both located in Montana, the American Indian Disability
Technical Assistance Center and the Rural Institute on Disabilities
are attempting to assist in program development across Indian Country
in the state, enhancing services in self-employment, among other
services CSKT consumers access.
CSKT Lessons Learned
It is important to network with service providers,
agencies offering grants, and technical assistance organizations
in order to understand the service options and funding available
to the community. In addition, a program could consider integrating
transportation services with vocational rehabilitation and job employment,
education programs, elderly services, and disability services.
Hopi Nation
The Hopi Reservation is located in northeastern Arizona.
It occupies about 2,439 square miles. The tribal population is approximately
11,000, with 8,000-9,000 tribal members residing on the reservation.115
The reservation lies 92 miles northeast of Flagstaff and 50 miles
north of Winslow. The Hopi people reside in 12 villages throughout
three mesas, including two villages located 45 miles west of Third
Mesa. The village of Kykotsmovi is home to the Hopi tribal government
headquarters. The size of the population of each village determines
the number of council seats. However, not all villages have representation;
some choose to practice their traditional form of leadership and
governance. The council is composed of both male and female representatives.
The Hopi are a closeknit matrilineal people with strong
extended family and clan relationships. They are by tradition farmers
and practice dry farming. In addition, the Hopi are a nongaming
tribe, choosing not to participate in this economic venture for
philosophical and religious reasons.
Hopi Office of Special Needs
The Hopi Office of Special Needs includes the early
intervention program and the newly awarded vocational rehabilitation
program. Their office serves tribal members residing on the Hopi
Reservation. The program director attributes the success of the
program to tenacity and motivation. The establishment of the Office
of Special Needs all started with a parent group with the determination
and dedication to make a difference.
Success is enhanced through networking with other
tribal programs within the tribal organizational structure. The
tribal personnel department supports the program's efforts and assists
in the hiring and orientation of tribal members with disabilities.
Staff at the Office of Special Needs is aware that any kind of change
takes time and should be approached "one step at a time." Staff
report that the Hopi philosophy addresses disability with the basic
belief that all people have value and worth. Tribal departments
typically support efforts of the Office of Special Needs to serve
tribal members with disabilities through concerted efforts to comply
with any requests made for assistance.
Hopi State-Level Collaboration
The Hopi early intervention program is provided with
technical assistance through the state. In addition, staff members
for the new vocational rehabilitation program are working with the
state staff to finalize a cooperative agreement for providing services
to consumers. Tribal staff members report a positive relationship
with state counterparts and work collaboratively to expand services.
They also report that working cooperatively with other resources
results in people with disabilities being provided with better and
more comprehensive services.
The director of the Office of Special Needs, Mrs.
Rhonda Talaswaima, was appointed by the state governor and is the
only Native American to sit on the Arizona State Governor's Council
for Developmental Disabilities. She was also involved with Partners
in Policymaking, a leadership program developed to empower consumers
and parents of individuals with disabilities to make systemic changes
in their communities. Staff members report it was an opportune time
to network and make a difference in the state. According to Mrs.
Talaswaima, who believes in demonstrating initiative, people need
to be supported in becoming empowered to believe that they can make
a difference.
The director of the Office of Special Needs also serves
on The Institute of Human Development's Community and Consumer Advisory
Committee at Northern Arizona University. The role of this organization
is to review different issues and priorities affecting people with
disabilities. In addition, Hopi is one of the first tribes in the
State of Arizona to participate in the Department of Economic Security
(DES) Advisory Council. This council provides an opportunity for
Hopi people to discuss specific issues related to DES programs on
the reservation, including programs dealing with individuals with
disabilities.
Hopi Lessons Learned
Tribal staff members report that dedicated employees
who share a vision of improving the lives of individuals with disabilities
are key to creating a better environment in reservation communities.
Demands upon the time and commitment of staff are significant, and
the Hopi Tribe has addressed this by building a strong foundation
of understanding, vision, and participation in leadership. Staff
members also report that while funding is important, of more importance
are staff who work hard to provide options and resources in the
lives of people with disabilities. The Annual Hopi Special Needs
Activity Day attracts over 600 people from reservation communities.
This turnout is significant, according to tribal staff, and can
be linked to the staff's level of outreach and enthusiasm. Another
key to improving the reservation environment for people with disabilities
is the ability of tribal staff to network throughout the larger
state agencies and leverage new resources and support.
Oneida Nation
By tribal constitution, direction for the Oneida Nation
is provided by a General Tribal Council (GTC) that must meet a minimum
of two times per year.116 The GTC includes all of the
voting-age enrolled members. At GTC meetings, the general direction
for tribal operations is established. That general direction is
carried out and further defined by the business committee, which
is a nine-member panel that includes four executive officers and
five council members who are elected at-large. The business committee
is also responsible for administration of the day-to-day operations
of the tribe and its programs, services, and affairs.
The Oneida Nation has nearly 15,000 tribal members
with, according to the 2000 census, roughly 7,600 living on, or
adjacent to, the reservation in Brown and Outagamie Counties. The
census figures may be skewed in that respondents who self-identified
as American Indian may include tribal affiliations other than Oneida.
The data indicates that another 2,000-3,000 Oneida live in Milwaukee,
Chicago, and other urban areas. Surprisingly, a significant population
of Oneida lives in California because of relocation.
The Oneida Reservation spans 56 square miles and lies
diagonally in Brown and Outagamie Counties, along a northeast-southwest
axis west of the Fox River in northeastern Wisconsin. The reservation
is "checker-boarded" with tribal and non-Indian land ownership.
A large portion of the reservation lies within the city limits of
Green Bay, Wisconsin. The Oneida Reservation can be classified as
an "urban" reservation. This creates a great advantage in accessibility.
Yet the Oneida are faced with frequent intercultural-interracial
relationships. These can be rocky or they can be smooth. There exists
a subtle racial discrimination among some members of neighboring
communities, but it does not manifest often. The Oneida Nation and
the City of Green Bay, along with other neighboring communities,
generally have a positive working relationship.
Diversified business development is building gradually
for the tribe. Among the tribal businesses are a hotel/conference
center, a printing business, a casino, smoke shops, a cooperative
food store, and a communications corporation. Their largest revenue
producer is gaming. Prior to gaming, there was not much business
or revenue. The Supreme Court case Bryant vs. Itasca opened the
door for smoke shops and retail gasoline outlets (One-Stops). These
smoke shops and One-Stops became a significant source of revenue
for the tribe.
The primary coordinator for service to people with
disabilities is the director of the Tribal Vocational Rehabilitation
Services Program. The 1998 amendments to the Rehabilitation Act
made it possible for Oneida and other tribes in Wisconsin to be
involved under Section 121 of the Rehabilitation Act. Previously
the Oneida Nation had provided similar services through the Job
Partnership Training Act (JTPA). The Oneida received their initial
vocational rehabilitation services grant in 1998.
Finding Hopi Supports and Overcoming Attitude as
a Barrier
The tribal staff reported that many JTPA participants
who received training services were repeatedly coming back for the
same types of services. Staff observed a pattern emerging that those
without cognitive or emotional problems were the only ones benefiting
from conventional job training services. It was realized that the
problem was not the individuals' intent or motivation. Cognitive
or other disabilities appeared to affect client ability to handle
job training and key life issues. Tribal staff identified the need
for supplemental services for some consumers in the program and
put these consumers in contact with other directed rehabilitation
resources. This move has increased participation in the Oneida program
10-fold. The state served 16 Oneida people in one year prior to
Oneida receiving the vocational rehabilitation grant. Since then,
the Oneida program has served 180 consumers in approximately three
years. The Oneida program has a cooperative relationship with local
employers. One of the greatest needs has been to help people get
motivated and job ready.
Members of the tribal staff report that one of the
barriers is the tendency for service providers to perpetuate dependency,
which can lead to learned helplessness. In a dependency mode the
tribe is looked to for all tribal consumer needs. Staff report that
changing the system is a slow process, and they are working so that
both consumers and the tribe change their way of thinking. The members
of tribal vocational rehabilitation program staff are working to
create interdependent models that provide opportunities for creating
choices and eliminating barriers for people with disabilities.
When the counseling staff works with an individual
with a disability, a team is formed. The team is made up of a counselor
and other human service professionals who share case management.
In the past there did not seem to be any communication on coordination
of services and one program would not be aware that a consumer was
receiving other services such as mental health counseling. This
lack of coordination would inevitably create a conflict in which
one program would develop an Individual Plan for Employment (IPE)
that was in conflict with the mental health program. These programs
now work together and IPE are developed that parallel treatment
plans. They may even "piggyback" appointments. The One-Stop Job
Center, which the Oneida have created under the Workforce Development
Act, improves communication between the multiple service provider
partners and the consumer while developing closer working relationships.
This translates into a better delivery system shifting the responsibility
to the consumer.
Oneida Nation and Wisconsin State-Level Collaboration
The tribe's vocational rehabilitation director currently
serves as chair of the Wisconsin State Independent Living Council.
The state council annually sets aside funds for requests for proposals
for outreach to underserved populations such as tribes. All independent
living centers (ILCs) in the state that serve tribal populations
are provided with supplemental funds if their proposals show that
the supplemental funds can enhance delivery of services to tribal
populations. Wisconsin is the first state to have all of its ILCs
federally funded. Mr. Steve West (Oneida Nation) was appointed to
the state ILC as a result of the 1998 Rehabilitation Act amendments.
He reports no problems from the state's side with the 1998 amendment.
This is the amendment that mandates that Section 121 programs should
be represented on the state ILC and rehabilitation council. The
governor of Wisconsin appointed the tribal vocational rehabilitation
director, who also serves on the regional Workforce Development
and the Governor's Manpower Planning Boards. The director also actively
serves on the Consortia of Administrators of Native American Rehabilitation
executive board as treasurer.
Oneida Nation Funding Options
The Oneida Nation made their annual payment of $4.8
million to the State of Wisconsin in January 2003 from tribal gaming
revenues in accordance with their agreement (compact) with the state.
The compact allows the tribe to designate where these funds are
spent. Tribes supported a request from the state vocational rehabilitation
agency to make funds available for the purpose of matching additional
federal dollars under Title I of the Rehabilitation Act. The state
legislature agreed and allocated $350,000. These dollars supplement
vocational rehabilitation activities and made it possible to create
two full-time counselor positions in urban Milwaukee. This compact
also serves to supplement projects such as the Great Lakes Inter-Tribal
program (covering nine tribes). This strategy helps save vocational
rehabilitation funds for use in providing other direct services
to all people with disabilities across the State of Wisconsin.
Oneida Nation Lessons Learned
The experiences of the Oneida Nation vocational rehabilitation
staff indicate that one key lesson is to focus on changing the attitudes
among tribal leadership, tribal staff, and consumers about fostering
independence and reducing dependence as a universal goal. Another
key lesson was the importance of program coordination among tribal
and state resources and case management in providing effective services
and long-term employment for people with disabilities. Finally,
the experience at the Oneida Nation further underscores the impact
of strong leadership at both tribal and state levels on the creation
of new funding and programming opportunities to better serve people
with disabilities in tribal communities.
Rehabilitation Services Administration - Region X
The Region X Rehabilitation Services program has a
person with involvement in tribal affairs and cultural traditions
serving as rehabilitation services specialist. Others have described
her sharing intimate knowledge of tribal government and federal
and tribal barriers as particularly helpful to American Indian Vocational
Rehabilitation Services agencies and Rehabilitation Services Administration
staff.117 Monitoring of and technical assistance to the
American Indian vocational rehabilitation programs were sparse because
of budgetary needs until during the 1990s, when despite budgetary
restrictions, limited technical assistance and monitoring became
available thanks to the personal commitment of the assistant regional
commissioner for Region X. He conducted recent onsite visits in
California, Oregon, Arizona, New Mexico, Colorado, Wyoming, and
Oklahoma, as well as revisited sites that were visited in previous
years.
Region X Lessons Learned
Among the many lessons learned from this regional
experience was the importance of cultivating and displaying positive
leadership qualities at the federal level. Perseverance, commitment,
innovation, and inclusion were among the leadership qualities reported
as important regarding the way Region X staff worked with tribal
leaders and people with disabilities across the affected tribal
entities. Region X actions demonstrating these and other leadership
qualities, such as the ability to lead by example, to "smooth the
way," and to demonstrate commitment, raised the consciousness of
other people about the needs of the American Indians with disabilities.
Other demonstrations of effective leadership were noted in accounts
of culturally sensitive personal contacts with tribal councils and
tribal leadership to assist in the understanding of vocational rehabilitation
programs and the potential benefits for tribal members.
APPENDIX E
Observations of Community 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 thoughts
shared and actions taken. The passion was conveyed not only through
descriptions of the programs and services delivered, but in the
difficulties many programs transcended over time.
- Perseverance
In the face of many challenges and obstacles, the program leader's
belief in the 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
tribal communities in ways that improve the provision of disability
services and seemed to have mental pictures and plans that were
demonstrated through unique or innovative approaches to addressing
the gaps in services for tribal members with disabilities.
- Commitment
The majority of program leaders had been with the program for
several years and 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 favoring
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 sometimes slow process of
growth that also occurred in ways that built 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
with a sense of hopelessness. Some program leaders have described
the bleak realities of tribal members with disabilities. In the
face of some desperate conditions, these program leaders try to
embody a positive sense of hope, inspiring consumers to hang in
there; change is coming.
Most program leaders who were interviewed for this
report 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, including tribal people with
disabilities, who have contributed to the success of effective programs
and the services. Humility was apparent as leaders expressed excitement
at how segments of their tribal communities fought long and hard
for change that resulted in improvements for people with disabilities.
When they speak of success, the tribal leaders 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.
APPENDIX F
Community Stories of Innovation Innovations
in Breaking Down Barriers: Parents, Self-Advocates, and Other Advocates
in Action
A parent acts. Ms. Rhonda
Talaswaima's story about what led to the creation of the Hopi Office
of Special Needs captures the spirit of innovation from a grassroots
perspective. Her pathway into the world of disabilities began with
the birth of her son in 1991. Before that she did not think much
about disabilities. After he was born with disabilities, her eyes
were opened to the needs of children with disabilities and their
families. In 1996, an event featuring a guest speaker on disabilities
brought several families together who had children with disabilities.
For the first time, at that meeting, she saw other family members
from the tribe who had children with disabilities. Ten to twelve
families connected there and began to learn and understand together
how the community could better serve their children-a new generation.
They started meeting in each other's houses together with other
interested people; the Hopi Parent-to-Parent Support Group was thus
formed. This group wanted to protect the rights of children. Culturally
(historically), Hopi families kept family members with disabilities
at home. Then, contact with people outside of the reservation suggested
sending them away. Ms. Talaswaima noticed that this generation wants
to learn and find out more. They advocated for an Office of Special
Needs for two years until the office was formed. Prior to that,
there was no program to protect the rights of people with disabilities.
Today, the Office of Special Needs receives federal
funding for their early intervention program, which provides services
for children from birth to age five. One goal of the program is
to strengthen the early intervention program. They have created
a culturally appropriate video, brochure, and calendar. They are
working from a different angle. While most tribes operate from an
elderly perspective, the Hopi program works from birth up. They
recently applied for a vocational rehabilitation grant and just
received notice that they received it. Now students graduating from
high school can transition to a new program to prepare for employment.
The Hopi Office of Special Needs sees the great need
for training in the community. One way they have increased awareness
is through their Special Needs Activity Day. The Hopi Parent-to-Parent
Support Group first organized this community event in 1996 as a
grassroots effort. Last year 600 attended. Many residential centers
bring their consumers, and local musicians play music. A Hopi motivational
speaker, David Talas, who is blind, spoke at this year's event.
Some event activities include a bean bag toss with visual disability
simulation, a Polaroid family picture with frames made by participants
in the Hopi childcare program, a wheelchair obstacle course, a fish
pond, a simple lunch, T-shirts with their logo, and door prizes
donated by various programs and businesses. The theme of the event
is "Celebrate Diversity-Everyone is Unique."
The Hopi Office of Special Needs was recently awarded
a vocational rehabilitation grant that will serve individuals with
disabilities ages 16 to 64. In addition to their newly granted vocational
rehabilitation program there is collaboration with the Division
for Developmental Disabilities to provide support for families,
such as respite and other services. There is a movement to train
and certify caregivers through various service providers. This assists
in moving toward self-determination, as a person with a disability
can choose a family member to provide respite care. This family
member can be certified to provide services, which improves choices
of caregivers. A new provider, ARISE, is interested in setting up
a program on the reservation. Currently, ALPINE has a day program
to transport people to their arts and crafts program. This program
has a unique component: tribal members with disabilities create
art products and market them on the Internet. They hold open houses
during the year and they've done a great job in marketing products.
As with all of the other programs, this is only one component of
many.
Larry Alflen of the Pueblo of the Zuni offers a different
twist on innovation. The Zuni program provides a unique service,
one that many tribes may wish to duplicate. The Pueblo of the Zuni
territory is extremely remote and isolated. Transportation issues
play a big role in the need for improved access for tribal members
with disabilities.
The Pueblo of the Zuni has a program that offers a
comprehensive array of services. These include supported living
and assisted living services. Supported living provides one-on-one
services on a 24-hour basis. Assisted living provides services for
individuals with the ability to live more independently; periodic
support, respite, and personal care are provided. Services are provided
in the home (e.g., assistance preparing for daily activities and
respite for a family member who is the caregiver).
The Pueblo of the Zuni operates an extensive public
transportation program that supports persons with disabilities as
well as other members of the public. Last year they provided approximately
33,000 trips around the community. The program is funded under Section
5311, Small Urban and Rural Transportation grant, which assists
with administrative monies and capital. The Pueblo owns several
15-passenger vans, some with wheelchair lifts; they are demand responsive
with a dispatcher. A State of New Mexico vocational rehabilitation
transportation grant provides for the use of peer drivers. The Pueblo
of the Zuni also has Section 5310, a capital program for Elderly
and Disabled Transportation.
The program provides up to 200 trips per day. The
number one challenge is getting people to where they need to go.
Unemployment is high. Among those who are employed, most work in
Gallup, representing a transportation challenge to this off-reservation
community. An additional challenge is keeping the vehicles operational.
How do they maintain funding? They're an established program and
have a positive relationship with the grant funds manager .
Twelve years ago, Mr. Alflen saw the need and decided
he wanted to implement transportation services. The efforts have
been successful. He looks at different options in order to meet
as many needs as possible. The Pueblo of Zuni recently got approved
to provide transportation under a Medicaid program. This will enable
the tribe to submit a bill for transportation under Medicaid and
will also help their transportation program to sustain itself.
Unemployment among the Pueblo of Zuni can run as high
as 67 percent of the workforce. Finding employment is difficult;
finding employment for people with disabilities is even more difficult.
In response, they have created several consumer-owned businesses:
a convenience grocery store and a regional recycling program. They
also have a foundation grant to start a computer center. In addition,
the Pueblo uses the transportation program as a mechanism to employ
people with disabilities: several drivers and the dispatcher have
received training through the Pueblo of Zuni's vocational rehabilitation
program.
Again, the Hopi Nation and the Pueblo of Zuni are
only two tribes among many who are creatively approaching the barriers
they face locally in addressing the needs of tribal members with
disabilities. Other tribes have conducted collaborative efforts
through strategies that work, as shown in the examples below.
Effective Collaboration
Advocates and self-advocates act.
Darlene Finley of the Three Affiliated Tribes emphasizes the importance
of "knowing the system." To complement self-advocacy, she believes
that you can be your client's best advocate if you know and take
advantage of the available services, grants, and resources. Ms.
Finley also suggested that consumers find one person to follow them
through the entire application process from beginning to end. This
helps in minimizing the confusion that can result from many people
assisting one individual in the process without a single point of
contact for consistency. Program staff can assist consumers more
effectively if they take a case management approach and follow a
client through the entire process. Ms. Finley has stated that a
comprehensive knowledge of resources available has led to the success
of her program.
Like the Three Affiliated Tribes, the Oneida Nation
has created a very sophisticated network of program collaborations.
Steven Corky West, with the Oneida Nation's Job Training Program,
has advocated for a number of social service initiatives funded
by the tribe such as their tribally supported One-Stop Job Center.
This initiative is supported by various tribal, federal, and state
funds. A combination of tribal dollars supports the center; activities
and adjuncts such as mental health, alcohol, and other drug abuse
services; and childcare and development programming, all of which
integrate into a seamless delivery of services. In addition, Mr.
West has collaborated with 125 employers on and bordering the Oneida
Nation Reservation who have come together to develop a workforce
diversification initiative. Employers started this initiative. The
motivation may not be altruistic, but he feels that it gets the
job done and it increases success for his consumers. A key for successful
employment programming is the active involvement in the workforce
development system. There is a close link between the Workforce
Investment Act and vocational rehabilitation; together they can
create a plan that is to the best advantage of the consumer. Mr.
West's experience tells him that developing collaborations with
the state Workforce Development Board increases the chances for
success.
Supporting Self-Advocacy
Jo White of the Pine Ridge Quad Squad advocates from
a grassroots level for appropriate services through state and local
programs. Ms. White has developed numerous links with key service
providers in the state and locally. She works closely with consumer
self-advocates and listens intently to their needs. In one such
case, Ms. White was confronted with consumers who use wheelchairs
and were being pushed off the roads by passing cars. Motorized wheelchairs
do not seem to be very practical on the reservation where there
are no sidewalks. Ms. White then began to work with the housing
department of her tribe to get crossing lights and sidewalks installed.
These are ways that advocacy can transform a community and increase
the awareness of tribal members about unmet needs. Ms. White's primary
focus is in teaching and urging tribal members with disabilities
to advocate for themselves. She cannot emphasize enough how important
it is that consumers learn to take control of their lives by asking
for the help they need.
Len Whitebear of the Cook Inlet Tribal Council in
Anchorage, Alaska, feels that it is her job to advocate in support
of consumer advocates by educating the community and tribal leaders
about the diversity of disabilities. She believes that acceptance
goes hand-in-hand with education. Much of Ms. Whitebear's time is
dedicated to developing relationships with tribal leaders and community
members.
Rita LaFrance with the St. Regis Mohawk Nation in
New York State advocates at the state and national levels for much
needed change. Chief Hilda Smoke of the St. Regis Mohawk Nation
shared how advocacy at the national level assists in clarifying
who addresses disability issues unique to tribal communities. As
tribes seek assistance in providing much-needed services, they discover
the huge gaps in accountability. The St. Regis Mohawk Nation approached
the National Congress of American Indians and the United South and
Eastern Tribes to ask for a resolution in support of tribes who
have endorsed the American with Disabilities Act (ADA) through their
own tribal laws and in challenging the Indian Health Service and
the Bureau of Indian Affairs to better address disability issues.
Support from Tribal Leadership
The Oglala Nation passed ADA as a tribal resolution
in 1991. It happens that one of the founding members of the Quad
Squad was a tribal council member. The Confederated Salish and Kootenai
Tribes passed their own version of ADA through tribal resolution
in 1995. The Three Affiliated Tribes also have their own laws protecting
tribal members with disabilities.
The Navajo Nation adopted such alternative tribal
support. The strategy was shared in interviews with two tribal members,
Mrs. Ela Yazzie King with the Gallup-McKinley School District, also
a consumer and a former member of the National Council on Disability,
and Mrs. Paula Seanez with the Navajo Nation's Office of Special
Education and Rehabilitation. They both spoke of the landmark decision
by the Navajo Nation to support its tribal members who had been
underserved for so long. In 1986, under the leadership of the Navajo
Nation president, a renegotiation of several land lease contracts
led to a significant set-aside of monies in a specific trust fund
to provide for services in eight or nine categories such as veterans'
services, elder services, and services for tribal members with disabilities.
Of the eight or nine trust fund categories, only the
fund account that serves Navajo tribal members with disabilities
remains. Each year, the committee managing the trust awards grants
funds from the accrued interest of the trust fund to agencies and
programs serving the Navajo Nation. Grants are awarded for as long
as three years. One of the most significant impacts of this trust
was in providing seed money to develop ASSIST! to Independence and
the independent living services on the Navajo Reservation. This
trust has also supported transportation services, recreation services,
development and improvement of rehabilitation services, and caseload
reduction. While it is true that consumers on the Navajo Nation
continue to experience significant barriers to service, this trust
honors the responsibility that the tribal government has to tribal
members with disabilities and works to improve the conditions and
service.
APPENDIX G
Mission of the National Council on Disability
Overview and Purpose
The National Council on Disability (NCD) is an independent
federal agency with 15 members appointed by the President of the
United States and confirmed by the U.S. Senate. The overall purpose
of NCD is to promote policies, programs, practices, and procedures
that guarantee equal opportunity for all individuals with disabilities,
regardless of the nature or significance of the disability, and
to empower individuals with disabilities to achieve economic self-sufficiency,
independent living, and inclusion and integration into all aspects
of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing basis,
policies, programs, practices, and procedures concerning individuals
with disabilities conducted or assisted by federal departments
and agencies, including programs established or assisted under
the Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act, as well as all
statutes and regulations pertaining to federal programs that assist
such individuals with disabilities, in order to assess the effectiveness
of such policies, programs, practices, procedures, statutes, and
regulations in meeting the needs of individuals with disabilities.
- Reviewing and evaluating, on a continuing basis,
new and emerging disability policy issues affecting individuals
with disabilities at the federal, state, and local levels and
in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts and the impact of such efforts on individuals with
disabilities, access to health care, and policies that act as
disincentives for individuals to seek and retain employment.
- Making recommendations to the President, Congress,
the secretary of education, the director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies about ways to better promote equal opportunity,
economic self-sufficiency, independent living, and inclusion and
integration into all aspects of society for Americans with disabilities.
- Providing Congress, on a continuing basis, with
advice, recommendations, legislative proposals, and any additional
information that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities Act
of 1990 (42 U.S.C. § 12101 et seq.).
- Advising the President, Congress, the commissioner
of the Rehabilitation Services Administration, the assistant secretary
for Special Education and Rehabilitative Services within the Department
of Education, and the director of the National Institute on Disability
and Rehabilitation Research on the development of the programs
to be carried out under the Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner of the Rehabilitation
Services Administration with respect to the policies and conduct
of the administration.
- Making recommendations to the director of the
National Institute on Disability and Rehabilitation Research on
ways to improve research, service, administration, and the collection,
dissemination, and implementation of research findings affecting
persons with disabilities.
- Providing advice regarding priorities for the
activities of the Interagency Disability Coordinating Council
and reviewing the recommendations of this council for legislative
and administrative changes to ensure that such recommendations
are consistent with NCD's purpose of promoting the full integration,
independence, and productivity of individuals with disabilities.
- Preparing and submitting to the President and
Congress an annual report titled National Disability Policy:
A Progress Report.
International
In 1995, NCD was designated by the Department of State
to be the U.S. Government's official contact point for disability
issues. Specifically, NCD interacts with the special rapporteur
of the United Nations Commission for Social Development on disability
matters.
Consumers Served and Current Activities
Although many government agencies deal with issues
and programs affecting people with disabilities, NCD is the only
federal agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, veteran status, or other
individual circumstance. NCD recognizes its unique opportunity to
facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of people with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, NCD originally proposed what eventually became
the Americans with Disabilities Act (ADA). NCD's present list of
key issues includes improving personal assistance services, promoting
health care reform, including students with disabilities in high-quality
programs in typical neighborhood schools, promoting equal employment
and community housing opportunities, monitoring the implementation
of ADA, improving assistive technology, and ensuring that those
persons with disabilities who are members of diverse cultures fully
participate in society.
Statutory History
NCD was initially established in 1978 as an advisory
board within the Department of Education (P.L. 95-602). The Rehabilitation
Act Amendments of 1984 (P.L. 98-221) transformed NCD into an independent
agency.
National Council on Disability
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ADDRESS CORRECTION REQUESTED
People
with Disabilities on Tribal Lands - NCD - August 1, 2003
(Spine)
1 See, e.g., Montoya v. United States,
180 U.S. 261 (1901).
2 The TEP members are identified in Appendix
A of this report.
3 A search of the U.S. Department of the
Interior's Bureau of Indian Affairs Web site was not possible because
of the temporary closing due to judicial order. Some BIA data were
available at Project HOPE from other project work. During the next
stage of this literature review task, contact and interviews with
BIA staff were used to obtain additional information on relevant
topics.
4 The number of American Indians reported
in 1990 is believed to understate the actual number of Indians residing
in the United States. Census takers are believed to have undercounted
the number of Indians residing on reservations by more than 12 percent.
(Richardson D, Bureau of Labor Statistics Daily Report, December
28, 1999.)
5 U.S. Census Bureau, "The American Indian
and Alaska Native Population: 2000," Census 2000 Brief, February
2002.
6 For example, only 15 percent of the population
residing in the Southern Ute Reservation of Colorado in 2000 indicated
that they were entirely American Indian or American Indian in combination
with another race. Similarly, according to the census, only 35 percent
of the population of the Lake Traverse Reservation of South Dakota
self-identified themselves as American Indian. The majority of the
population on both these reservations identified themselves as "White."
7 Personal conversation with Jackie Kruszek,
Office of Native American Programs, Denver National Program Office,
June 20, 2000.
8 Ogunwole S, "The American Indian and
Alaska Native Population: 2000," Census 2000 Brief, February
2002.
9 McNeil J, "Americans with Disabilities
1997," Current Population Reports, U.S. Census Bureau, February
2001.
10 Bradsher J, "Disability among Racial
and Ethnic Groups," Disability Statistics Center, January 1996.
11 Fowler L, Seeking T, Dwyer K, Duffy
SW, Brod RL, Locust C, "American Indian Disability Legislation and
Programs: Findings of the First National Survey of Tribal Governments,"
Journal of Disability Policy Studies 10(2):166-185.
12 Clay J, A Profile of Independent
Living Services for American Indians with Disabilities Living on
Reservations, University of Montana Rural Institute, Missoula,
MT, 1992.
13 Schacht R, Gahungu A, White M, LaPlante
M, and Menz F, An Analysis of Disability and Employment Outcome
Data for American Indians and Alaska Natives, American Indian
Rehabilitation Research and Training Center, Flagstaff, AZ, September
2000.
14 18 U.S.C. § 1151.
15 See, e.g., DeCoteau v. District County
Court, 420 U.S. 425 (1975).
16 Snipp C, "Selected Demographic Characteristics
of Indians," in American Indian Health: Innovations in Health
Care, Promotion, and Policy (ed. by ER Rhoades), The Johns Hopkins
University Press, Baltimore, MD, 2000.
17 Lishner D, et al., "Access to Primary
Health Care Among Persons with Disabilities in Rural Areas: A Summary
of the Literature," Journal of Rural Health, Winter 1996;
12(1): 45-53.
18 Mueller K, et al., "Health Status and
Access to Care among Rural Minorities," Journal of Health Care
for the Poor and Underserved, May 1999; 10(2): 230-249.
19 National Council on Disability, Outreach
to Minorities with Disabilities and People with Disabilities in
Rural Communities: Roundtable Report on Findings, Atlanta, Georgia,
August 4, 1997.
20 Snipp C, "Selected Demographic Characteristics
of Indians," in American Indian Health: Innovations in Health
Care, Promotion, and Policy (ed. by ER Rhoades), The Johns Hopkins
University Press, Baltimore, MD, 2000.
21 Barents Group of KPMG Consulting, Inc.,
American Indian/Alaska Native Eligibility and Enrollment in Medicaid,
SCHIP, and Medicare: Design Report, prepared for Centers for
Medicare and Medicaid Services, April 11, 2002.
22 See, e.g., Montoya v. United States,
180 U.S. 261 (1901).
23 Cherokee Nation v. Georgia, 33
U.S. 1, 33 (1831).
24 Executive Order #13175 of November 6,
2000.
25 Reconfirmation of Executive Order #13175
of June 19, 2002. Official White House correspondence from Alberto
Gonzales, Counsel to the President, to Congressman Frank Pallone,
Jr.
26 Reconfirmation of Executive Order #13175
of June 19, 2002. Official Correspondence from Congressman Frank
Pallone to Advocates of Indian Country. June 25, 2002.
27 Worcester v. Georgia, 31 U.S.
515, 559 (1832).
28 United States v. Wheeler, 435
U.S. 313, 322 (1978).
29 See, e.g., Kiowa Tribe of Oklahoma
v. Manufacturing Technologies Inc., 523 U.S. 749 (1998) (holding
that, with regard to suits brought by private parties against Indian
tribes, "s a matter of federal law, a tribe is subject to suit only
where Congress has authorized the suit or the tribe has waived its
immunity").
30 Rehabilitation Act of 1973, 29 U.S.C.
§§ 701 et seq.
31 Americans with Disabilities Act, 42
U.S.C. §§ 12101 et seq.
32 See 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).
33 42 U.S.C. § 12101(b)(1).
34 42 U.S.C. § 12111(5)(B)(i).
35 Olmstead v. L.C., 527 U.S. 581
(1999).
36 Florida Paraplegic Association, Inc.
v. Miccosukee Tribe of Indians of Florida, 166 F.3d 1126 (11th
Cir. 1999).
37 Ibid.
38 Ibid.
39 Sanderlin v. Seminole Tribe,
243 F.3d 1282 (11th Cir. 2001); but cf. Cruz v. Ysleta Del Sur
Tribal Council, 842 F. Supp. 934 (W.D. Texas 1993) (order dismissing
Tribe's motion to dismiss because of sovereign immunity).
40 20 U.S.C. § 1400(d)(1)(A).
41 20 U.S.C. § 1411(i)(1)(A).
42 20 U.S.C. § 1401(15(C).
43 Fowler L, Seeking T, Dwyer K, Duffy
SW, Brod RL, Locust C, "American Indian Disability Legislation and
Programs: Findings of the First National Survey of Tribal Governments,"
Journal of Disability Policy Studies 10(2):166-185.
44 National Indian Justice Center, Disabilities
and Their Effects on American Indian and Alaska Native Communities:
Final Report on Roundtable Conference, December 12-13, 1991,
Department of Health and Human Services, Public Health Service,
Indian Health Service, Rockville, MD, 1992.
45 Ibid., p. 2.
46 National Council on Disability, Meeting
the Unique Needs of Minorities with Disabilities: A Report to the
President and the Congress, April 26, 1993. National Council
on Disability, Lift Every Voice: Modernizing Disability Policies
and Programs to Serve a Diverse Nation, December 1, 1999. National
Council on Disability, "Carrying on the Good Fight: Summary Paper
from Think Tank 2000-Advancing the Civil and Human Rights of People
with Disabilities from Diverse Cultures," August 23, 2000.
47 National Council on Disability, Lift
Every Voice: Modernizing Disability Policies and Programs to Serve
a Diverse Nation, December 1, 1999. National Council on Disability,
"Carrying on the Good Fight: Summary Paper from Think Tank 2000-Advancing
the Civil and Human Rights of People with Disabilities from Diverse
Cultures," August 23, 2000.
48 Davis T and Trebian M, "Shaping the
Destiny of Native American People by Ending the Digital Divide,"
EDUCAUSE Review, January/February 2001: 38-46.
49 American Indian Disability Legislation
Project, Findings of a National Survey of Tribal Governments,
Rural Institute on Disabilities, The University of Montana, December
1995.
50 Ibid.
51 National Indian Justice Center, op.
cit., p. 18.
52 Ibid., p. 19.
53 Office of Special Education Programs,
Bureau of Indian Affairs Monitoring Report, U.S. Department of Education,
Office of Special Education and Rehabilitation Services, April 20,
2000.
54 Cox D and Langwell K, Sources of
Financing and the Level of Health Spending for Native Americans,
The Henry J. Kaiser Foundation, Washington, DC, October 1999.
55 Indian Health Service, Indian Health
Care Services and Eligibility Information, Rockville, MD (42
CFR 136.23).
56 Personal correspondence with Carleen
Anderson, Region X: Rehabilitation Services, January 10, 2003.
57 Lansing SP and Yazzie-King E, "Access
to Independent Living and Assistive Technology for American Indians
with Disabilities," in Rehabilitation and American Indians with
Disabilities: A Handbook for Administrators, Practitioners, and
Researchers (ed. by CA Marshall), Athens, GA: Elliot and Fitzpatrick,
Inc., 2001, p. 76.
58 "RESNA Technical Assistance Project:
AT Connections-State Assistive Technology (AT) Programs." Retrieved
from www.resna.org/taproject/at/connections.html on March 18, 2003.
59 Hopstock P, Baker C, Kelley J, and Stephenson
T, "Evaluation of the American Indian Vocational Rehabilitation
Services Program," Arlington, VA, Development Associates, June 30,
2002.
60 Of the 54 AIVRS programs included in
this evaluation, only seven indicated that they provided rehabilitation
technology services to "some" or "most" of their consumers.
61 National Council on Disability, "Federal
Policy Barriers to Assistive Technology," May 31, 2000.
62 Snipp C, "Selected Demographic Characteristics
of Indians," in American Indian Health: Innovations in Health
Care, Promotion, and Policy (ed. by Rhoades E), The Johns Hopkins
University Press, Baltimore, MD, 2000.
63 Demalle R and Rhoades E, "The Aboriginal
People of America," in American Indian Health: Innovations in
Health Care, Promotion, and Policy (ed. by Rhoades E), The Johns
Hopkins University Press, Baltimore, MD, 2000.
64 National Indian Justice Center, op
cit., p. 14.
65 Fowler L, Dwyer K, Brueckmann S, Seekins
T, Clay J, and Locust C, American Indian Approaches to Disability
Policy: Establishing Legal Protections for Tribal Members with Disabilities:
Five Case Studies, American Indian Disability Legislation Project,
University of Montana, December 1996.
66 Dwyer K, Fowler L, Seekins T, Locust
C, and Clay J, "Community Development by American Indian Tribes:
Five Case Studies of Establishing Policy for Tribal Members with
Disabilities," Journal of the Community Development Society,
2000; 31(2):196-214.
67 Faircloth S and Tippeconic J, "Issues
in the Education of American Indian and Alaska Native Students with
Disabilities," ERIC Digest, EDO-RC-00-3 (December 2000).
68 Technical Assistance Alliance for Parent
Centers, "Parent Training and Information Centers and Community
Parent Resource Centers." Retrieved from www.taalliance.org/PTIs.htm
on March 20, 2003.
69 National Native American Families Together
Parent Center, "National Native American Families Together Parent
Center." Retrieved from www.nativefamilynetwork.com on March 20,
2003.
70 Great Lakes Intertribal Council, "Native
American Family Empowerment Center." Retrieved from http://glitc.bfm.org/programs/default.php.
71 Jordan, Dixie, PACER Center, Inc., Minneapolis.
Telephone interview by Martina Whelshula. March 20, 2003.
72 Gahungu A and Sherman JM, An Examination
of the Relationship Between Consumer Satisfaction and Employment
Outcomes for Rehabilitated and Non-Rehabilitated American Indians,
American Indian Rehabilitation Research and Training Center, July
18, 2000.
73 U.S. Department of Education, American
Indian Vocational Rehabilitation Services Program Performance Report,
2001. Available at www.ed.gov/pubs/annualreport2001/333.html.
74 Hopstock et al., "Evaluation of the
American Indian Vocational Rehabilitation Services Program," 2002.
75 U.S. Department of Education, American
Indian Vocational Rehabilitation Services Program Performance Report,
2001. Available at www.ed.gov/pubs/annualreport2001/333.html.
76 Hopstock et al., "Evaluation of the
American Indian Vocational Rehabilitation Services Program," 2002.
77 The Consortia of Administrators for
Native American Rehabilitation (CANAR) Legislative Committee developed
a set of 11 resolutions for consideration by those who are responsible
for reauthorization of the Rehabilitation Act of 1973, as amended.
The resolutions were designed to promote the continuing growth of
culturally responsive rehabilitation services for American Indians
and Alaska Natives with disabilities. The resolutions were edited
and finalized with input from CANAR members at the CANAR Annual
Conference in Seattle, Washington, on December 11, 2001, and named
"The CANAR 11." Retrieved from http://www.nau.edu/ihd/CANAR/legislation.html
on January 10, 2003.
78 Locust C and Lang J, "Walking in Two
Worlds: Native Americans and the VR System," American Rehabilitation,
Summer 1996: 2-11.
79 CANAR, "Business Incubator Promotes
Self-Employment," CANAR: Newsletter for American Indian Vocational
Rehabilitation Programs, 2001; 3(2):1-2. CANAR, "Self-Employment
and Subsistence Hunting and Fishing in Alaska," Newsletter for
American Indian Vocational Rehabilitation Programs, 2001; 3(2):3-4.
80 Hermanson M, Landstrom B, and Domitrovitch
J, "Developing a Transportation System for Individuals with Disabilities
on a Rural Indian Reservation," American Rehabilitation,
Autumn 1994: 28-31.
81 Shawn K, "American Indian Transportation:
Issues and Successful Models," Technical Assistance Brief
#14, RTAO National Transit Resource Center. Retrieved from www.ctaa.org/ntrc/rtap/pubs/ta/am_ind.html
on May 31, 2002.
82 Sanderson PL and Clay JA, Strategies
on Successful Independent Living Services for American Indians with
Disabilities: A Research Dissemination Final Report, American
Indian Rehabilitation Research and Training Center, Northern Arizona
University.
83 Martin WE, White K, Saravanabhavan RC,
and Carlise K, "Training Programs for Working with Older American
Indians Who Are Visually Impaired," American Rehabilitation,
Summer 1993: 2-6.
84 Spas D, "People with Disabilities, Employees,
a Local Rural Economy: Everybody Wins with the Blackfeet PCA Program,"
Common Threads, Summer 1999. Available at http://ruralinstitute.umt.edu/rtcrural/indian/AmICT.htm.
85 "Best CIL Practices in Rural Independent
Living." Retrieved from http://www.rtcfpil.org/best_cil_practices_in_rural.htm
on March 18, 2003.
86 Diana Spas, Electronic Mail, Subject:
"The winners of APRIL's Best Practices Competition!" ASSIST! to
Independence, August 8, 2002.
87 Maureen Ryan, Electronic Mail, Subject:
"Best Practice AT Projects," ASSIST! to Independence, July 31, 2002.
88 "Best CIL Practices in Rural Independent
Living." Retrieved from http://www.rtcfpil.org/best_cil_practices_in_rural.htm
on March 18, 2003.
89 Pifer, Beth. Assist! to Independence.
Telephone interview. March 20, 2003.
90 "Best CIL Practices in Rural Independent
Living." Retrieved from http://www.rtcfpil.org/best_cil_practices_in_rural.htm
on March 18, 2003.
91 Stoddart ML, Jarvis B, Blake B, Fabsitz
RR, Howard BV, Lee ET, and Welty TK, "Recruitment of American Indians
in Epidemiologic Research: The Strong Heart Study," American
Indian and Alaska Native Mental Health Research, The Journal of
the National Center, 2000; 9(3):20-37.
92 Ericksen EP, "Problems in Sampling the
Native American and Alaska Native Population" in Changing Numbers,
Changing Needs: American Demography and Public Health. National
Research Council Committee on Population, National Academy Press,
Washington, DC, 1996.
93 Davis SM and Reid R, "Practicing Participatory
Research in American Indian Communities," American Journal of
Clinical Nutrition, 1999; 69(4 Supp):755S-759S.
94 Templer, Arlene. Confederated Salish
and Kootenai Tribes. Telephone interview by Martina Whelshula. September
10, 2002.
95 Whitebear, Len. Cook Inlet Tribal Council.
Telephone interview by Martina Whelshula. September 25, 2002.
96 Talaswaima, Rhonda. Hopi Nation. Telephone
interview by Wendy Thompson. September 13, 2002.
97 Seanez, Paula. Navajo Nation. Telephone
interview by Martina Whelshula. January 6, 2003.
98 Yazzie-King, Ela. Navajo Nation. Telephone
interview by Martina Whelshula. January 13, 2003.
99 Ibid.
100 White, Jo. Pine Ridge Oglala. Telephone
interview by Martina Whelshula. September 9, 2002.
101 West, Steven "Corky." Oneida Nation.
Telephone interview by Martina Whelshula. September 26, 2002.
102 Alflen, Larry. Pueblo of the Zuni.
Telephone interview by Martina Whelshula. September 24, 2002.
103 LaFrance, Rita. St. Regis Mohawk Nation.
Telephone interview by JoAnn Kauffman. September 13, 2002.
104 Finley, Darlene. Three Affiliated Tribes.
Telephone interview by Martina Whelshula. September 9, 2002.
105 Pratt, Linda. Yakama Nation. Telephone
interview by Martina Whelshula. September 23, 2002.
106 Interview with Dr. Bruce Finke, director,
Elder Care Program, Indian Health Service, October 17, 2002.
107 Interview with Lehoma Roebuck, public
health advisor, Office of Public and Behavioral Health, Indian Health
Service, September 27, 2002.
108 Indian Self-Determination and Education
Assistance Act, P.L. 93-638, 88 Stat. 2203, 25 U.S.C. § 450.
109 The tribal Self-Governance Amendments
of 2000, P.L. 106-260, 114 Stat. 711, August 18, 2000.
110 Interview with Sherry Allison, Ed.D.,
director, Special Education Programs, Bureau of Indian Affairs,
Center for School Improvement, September 27, 2002.
111 Interview with Larry Blair, director,
Division of Human Services, Bureau of Indian Affairs, October 14,
2002.
112 Interview with Richard Schremp, director,
Electronic Service Delivery, American Indian/Alaska Native Social
Security Programs, Social Security Administration, Denver Region,
October 16, 2002.
113 Interview with Yvonne Jackson, Administration
on Aging, Native American Programs, October 14, 2002.
114 Templer, Arlene. Confederated Salish
and Kootenai Tribes. Telephone interview by Martina Whelshula. December
19, 2002.
115 Talaswaima, Rhonda. Hopi Nation. Telephone
interview by Martina Whelshula. December 26, 2002.
116 West, Steven "Corky." Oneida Nation.
Telephone interview by Martina Whelshula. January 2, 2003.
117 Interview with Department of Education:
Region X Rehabilitation Services Specialist, September 27, 2002. |