People with Disabilities

on Tribal Lands: 

Education, Health Care, Vocational Rehabilitation, 

and Independent Living 

National Council on Disability 

August 1, 2003 
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

People with Disabilities on Tribal Lands: Education, Health Care, Vocational 

Rehabilitation, and Independent Living 

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. 
NATIONAL COUNCIL ON DISABILITY


An independent federal agency working with the President and Congress to increase the 

inclusion, independence, and empowerment of all Americans with disabilities. 

LETTER OF TRANSMITTAL 

August 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 expe­


rienced 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 rec­


ommends government-to-government (state to sovereign tribal to U.S. government) improvements in rela­


tionships needed for effective coordination across existing federally funded projects/programs. In addi­


tion, a Toolkit guide providing resource information was developed for use by consumers, tribal commu­


nities, 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 sensi­


tive 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.) 


1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004 

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov 

National Council on Disability Members and Staff 

Members

Lex Frieden, Chairperson, Texas

Patricia Pound, First Vice Chairperson, Texas

Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas

Milton Aponte, 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

iii 

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 Ann 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 

v 
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. 

vi 
Contents 

I. Preface ....................................................................1

II. Executive Summary ........................................................3

Summary of Research Findings .............................................4

Key Elements of Promising Practices in Indian Country ....................6

Barriers and Challenges to Effective Government-to-Government Relationships . . 7

Key Findings And Recommendations ........................................9

Conclusion ............................................................12

III. Research Findings ........................................................13

Overview .............................................................13

Method .........................................................14

Technical Expert Panel ............................................15

Project Strategy ..................................................15

Literature Review ......................................................16

Definition and Description of the American Indian and Alaska Native

Population Living in Indian Country Overall, People with Disabilities,

and Types of Disabilities ...........................................19

Unique Legal, Environmental, and Economic Factors Affecting Provision

of and Access to Appropriate Services for People with Disabilities in

Indian Country ...................................................26

Barriers to Provision of and Access to Appropriate Services for People

with Disabilities in Indian Country ...................................36

Assessing the Effectiveness of Strategies for Reducing Barriers to

Provision of and Access to Appropriate Services ........................47

Limitations to Understanding Issues of People with Disabilities Living

in Indian Country .................................................58

Federal Responsibility to Address Gaps in Knowledge ....................61

Key Respondent Interviews ...............................................63

Tribal Interviews .................................................64

Key Elements of Promising Practices .................................72

Federal Interviews ................................................75

vii 
IV. Government-to-Government Relationships: Findings and Recommendations .......83

Findings: Barriers to Effective Government-to-Government Relationships .........83

Recommendations to Increase Effective Government-to-Government

Working Relationships ...................................................89

V. Conclusion ..............................................................103

APPENDIX A. The Technical Expert Panel ....................................105

APPENDIX B. Interview Guide for Discussions with Federal/State Agency Staff ......109

APPENDIX C. Interview Guide for Discussions with Tribal Programs ..............111

APPENDIX D. Case Studies of Three Tribal Communities ........................113

APPENDIX E. Observations of Community Leadership...........................125

APPENDIX F. Community Stories of Innovation ................................127

APPENDIX G. Mission of the National Council on Disability ......................133

viii 
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 

1

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 

3
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 twothirds 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 offreservation trust lands. Thirty-five states have federal reservations within or overlapping state 

borders. The Federal Government, through the Bureau of Indian Affairs (BIA), officially 

4
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 

5
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 

6
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: 

7
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 

8
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 

9
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. 

10
• 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, 

11
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-togovernment 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 timehonored moral and legal obligations to tribal governments. 

12
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, crossagency 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. 

1

 See, e.g., Montoya v. United States, 180 U.S. 261 (1901). 

13
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 selfdetermination 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 

2

 The TEP members are identified in Appendix A of this report. 

14
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. 

15
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 

16
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) 

17
• 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 

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. 

18
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.” 

19
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 

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. 

20
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 

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. 

21
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 

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. 

22
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 

10 Bradsher J, “Disability among Racial and Ethnic Groups,” Disability Statistics Center, January 

1996. 

23
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, 

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. 

24
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 

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. 

25
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 rightsof-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 

14 18 U.S.C. § 1151.

15 See, e.g., DeCoteau v. District County Court, 420 U.S. 425 (1975).

26 
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 

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. 

27 
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 

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). 

28 
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 

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 
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 

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). 

30 
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 

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. 

31 
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 

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). 

32 
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. 

41 20 U.S.C. § 1411(i)(1)(A). 

42 20 U.S.C. § 1401(15(C). 

33
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 

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. 

34 
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 

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. 

35 
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 

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. 

36 
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 

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. 

37 
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. 

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. 

38 
• 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 

49 American Indian Disability Legislation Project, Findings of a National Survey of Tribal 

Governments, Rural Institute on Disabilities, The University of Montana, December 1995. 

39 
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 

50 Ibid. 

40
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. 

51 National Indian Justice Center, op. cit., p. 18. 

52 Ibid., p. 19. 

41 
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 

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. 

42 
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 

55 Indian Health Service, Indian Health Care Services and Eligibility Information, Rockville, MD 

(42 CFR 136.23). 

43 
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, 

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. 

44 
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 

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. 

45 
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 

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. 

46 
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 

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. 

47 
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 

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. 

48 
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 

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. 

49 
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 

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. 

50 
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, 

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. 

51 
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 

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. 

52 
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 selfemployment. 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 

78 Locust C and Lang J, “Walking in Two Worlds: Native Americans and the VR System,” 

American Rehabilitation, Summer 1996: 2–11. 

53 
succeeding in their goal of assisting people with disabilities to move toward economic selfsufficiency; 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 

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. 

54 
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 

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. 

55 
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. 

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. 

56 
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 

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. 

57 
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 offsite 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. 

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. 

58 
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 disabilityrelated 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 

59
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 

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. 

60 
‘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. 

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. 

61 
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 

62
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 coresearchers 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 

63
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. 

64
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. 

94 Templer, Arlene. Confederated Salish and Kootenai Tribes. Telephone interview by Martina 

Whelshula. September 10, 2002. 

65 
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 

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. 

66 
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 

97Seanez, Paula. Navajo Nation. Telephone interview by Martina Whelshula. January 6, 2003. 

67 
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. 

98 Yazzie-King, Ela. Navajo Nation. Telephone interview by Martina Whelshula. January 13, 

2003. 

99 Ibid. 

68 
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

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. 

69 
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. 

102 Alflen, Larry. Pueblo of the Zuni. Telephone interview by Martina Whelshula. 

September 24, 2002. 

70 
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. 

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. 

71 
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. 

105 Pratt, Linda. Yakama Nation. Telephone interview by Martina Whelshula. September 23, 

2002. 

72 
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 

73
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. 

74
Federal Interviews 

A series of interviews were conducted with federal and regional officials on government-togovernment 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. 

106 Interview with Dr. Bruce Finke, director, Elder Care Program, Indian Health Service, October 

17, 2002. 

75 
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 selfgovernance 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, 

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. 

76 
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. 

77
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 

110 Interview with Sherry Allison, Ed.D., director, Special Education Programs, Bureau of Indian 

Affairs, Center for School Improvement, September 27, 2002. 

78 
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. 

111 Interview with Larry Blair, director, Division of Human Services, Bureau of Indian Affairs, 

October 14, 2002. 

79 
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 

112 Interview with Richard Schremp, director, Electronic Service Delivery, American 

Indian/Alaska Native Social Security Programs, Social Security Administration, Denver Region, 

October 16, 2002. 

80 
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.” 

113 Interview with Yvonne Jackson, Administration on Aging, Native American Programs, 

October 14, 2002. 

81 

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 

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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 

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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 

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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. 

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• 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. 

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• 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. 

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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 

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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-toface 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 

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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. 

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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 

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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 

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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 

94
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-ofliving 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. 

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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-bystate 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 selfemployment, 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 

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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. 

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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. 

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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 

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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 

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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 

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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. 

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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 

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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.” 

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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

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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 

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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

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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? 

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• 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? 

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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? 

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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 selfdetermination 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. 

114 Templer, Arlene. Confederated Salish and Kootenai Tribes. Telephone interview by Martina 

Whelshula. December 19, 2002. 

113 
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 

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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 

115
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 coauthored 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 twopronged 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) 

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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-todate 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 

115 Talaswaima, Rhonda. Hopi Nation. Telephone interview by Martina Whelshula. December 

26, 2002. 

117 
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 

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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. 

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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 votingage 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 

116 West, Steven “Corky.” Oneida Nation. Telephone interview by Martina Whelshula. January 2, 

2003. 

120 
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. 

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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 

122
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 

117 Interview with Department of Education: Region X Rehabilitation Services Specialist, 

September 27, 2002. 

123 
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. 

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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. 

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• 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. 

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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. 

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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-toParent 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 selfdetermination, 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 

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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. 

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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. 

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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. 

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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. 

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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. 

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• 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. 

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• 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. 

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