National Council on Disability
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Publication date: August 1, 2003

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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

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

"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.

"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.

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

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 reim