Understanding 

In American Indian & Alaska Native Communities

TOOLKIT GUIDE 

National Council on Disability 

August 1, 2003 
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

Understanding Disabilities in American Indian and Alaska Native 

Communities: Toolkit Guide 

This report is also available in alternative formats and on NCD’s award-winning Web 

site at www.ncd.gov. 

Publication date: August 1, 2003 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

The views contained in this report do not necessarily represent those of the 

Administration as this and all NCD reports are not subject to the A-19 Executive 

Branch review process. 
About the Cover


The four symbols on the cover of the Toolkit Guide were chosen to represent the 

spectrum of disabilities, whether visible or hidden, that may be experienced by 

individuals in the American Indian and Alaska Native community. The universal meaning of each symbol is described in the captions below along with the meaning of the 

symbol as it is used in this Toolkit specifically. 

Access for People Who Are Blind or Have Low Vision (blind with cane) 

Universally, this symbol identifies areas that are specifically designed to 

be accessible to or in some cases tailored to the unique abilities of 

individuals who are blind or have low vision. Within the Toolkit, this 

symbol is used to represent the community of individuals for whom sight 

is not a primary sensory tool. 

Mobility Access Symbol (wheelchair) 

The wheelchair symbol indicates access for individuals who have a 

mobility disability, including individuals who use wheelchairs. The 

symbol is most commonly used to indicate an accessible entrance, 

bathroom, or environment that is sensitive to individuals with specific 

mobility access needs. Within the Toolkit, this symbol is simply used to 

represent the community of individuals with mobility needs of this kind. 

Communication Access for People Who Are Deaf or Hard of Hearing 

(signing hands) 

This symbol typically indicates that sign language interpretation is 

provided for a lecture, tour, performance, conference, or other program. 

Within the Toolkit, the symbol is used to represent the community of 

individuals whose primary means of communication is sign language. 

Hidden Disabilities (face beneath face) 

This symbol was designed specifically for the Toolkit after the Technical 

Expert Panel determined that there were currently only universal 

symbols for disabilities that are seen, leaving out the experiences of 

individuals with epilepsy, developmental disabilities, alcoholism, mental 

illness, learning difficulties, diabetes, and others who are not 

represented by the universal disability symbols. The symbol was inspired 

by the art of many indigenous cultures that designed faces with multiple 

overlaid masks. This symbol represents the community of individuals 

who have disabilities that are not externally visible but significantly 

impact an individual’s life. 

i 
Acknowledgments 

The National Council on Disability’s (NCD) Understanding Disabilities in American 

Indian and Alaska Native Communities: Toolkit Guide was developed through the 

passionate collaboration of many individuals. The foundation of this project was 

formed in a powerful sharing of experiences, knowledge, and hopes among 

consumers and advocates who live with disabilities. These individuals strived to 

create a new perspective about what it means to be an American Indian or an Alaska 

Native with a disability. This new consciousness will serve to transform Indian 

communities nationally and offer a new hope to so many individuals who for so long 

have felt invisible with no voice. 

NCD expresses its gratitude to the team at Kauffman and Associates, Inc., for 

drafting this toolkit. Team members include Project Director Dr. Martina Whelshula, 

Victor Paternoster, Tim Spellman, Wendy Thompson, and Ara Walline. 

Others who have greatly supported the development of this work and deserve special 

acknowledgment are Mike Blatchford, consultant; Kathy Langwell and Project HOPE; 

Desautel Hege Communications; Robert Shuckahosee, consultant; Frank Ryan, 

consultant; the Consortia of Administrators for Native American Rehabilitation 

(CANAR); the American Indian Disability Technical Assistance Center; the American 

Indian Rehabilitation Research Training Center; the National Congress of American 

Indians (NCAI); focus group participants at NCAI and CANAR conferences; and Judy 

Babbit from the City of San Antonio Disability Access Office. 

A special acknowledgment goes to those who represent the heart and soul of this 

effort, our Technical Expert Panel members: Mark Azure, Julie Anna Clay, Julia DavisWheeler, LaDonna Fowler, Joanne Francis, Joseph Garcia, Cordia LaFontaine, Carol 

Locust, Danny Lucero, David Miles, Damara Paris, Andrea Siow, H. Sally Smith, Raho 

Williams, Alvin Windy Boy. Thanks also to Jessie Stewart, age 10, for sharing her story. 

In attempts to understand the complex make-up of Indian country as it addresses the 

needs of tribal members and descendants with disabilities, tribal program directors 

shared willingly about the challenges and inspirations experienced in their work. NCD 

ii

acknowledges these individuals and the tribes they represent: Jo White, Oglala 

Nation at Pine Ridge; Arlene Templer, Confederated Salish and Kootenai Tribes; Rita 

LaFrance, St. Regis Mohawk; Rhonda Talaswaima, Hopi Nation; Darlene Finley, Three 

Affiliated Tribes; Linda Pratt, Yakama Nation; Larry Alflen, Pueblo of the Zuni; Steven 

“Corky” West, Oneida Nation; Ella Yazzie-King and Paula Seanez, Navajo Nation; and 

Len Whitebear, Cook Inlet Tribal Council. 

iii 
Technical Expert Panel 

Several individuals representing consumers and advocates within the American 

Indian and Alaska Native disability community nationwide were recommended to 

serve as members of a national Technical Expert Panel. The Technical Expert Panel 

served as project consultants and advisors providing guidance to the staff on the 

direction of the project. The Panel was instrumental in providing critical feedback and 

direction on the multitude of issues addressed throughout the development of this 

toolkit. The Technical Expert Panel members are as follows: 

Mark Azure 

Tsimshian/Hunkpapa Lakota 

Intertribal Deaf Council 

Consumer 

Julie Anna Clay 

Omaha Tribe 

Training and Dissemination Coordinator 

American Indian Rehabilitation Research and Training Center (AIRRTC) 

Consumer 

Julia Davis-Wheeler 

Nez Perce 

Nez Perce Tribal Council 

Chair, National Indian Health Board 

LaDonna Fowler 

Turtle Mountain Chippewa/Santee 

Sioux/Assiniboine 

Chairperson, Subcommittee on Disability, National Congress of American 

Indians 

Co-Founder, American Indian Rehabilitation Rights Organization of Warriors (AIRROW) 

National Board Member, AIRRTC 

Secretary, Multicultural Committee, 

National Council on Independent 

Living 

Co-Secretary, Native American Alliance 

for Independent Living 

Charter Member, Cultural Diversity 

Advisory Committee for National 

Council on Disability 

Native American Disability Consultant/ 

Consumer 

iv

Joanne Francis 

Akwesasne Mohawk 

International Disability Consultant 

Founding Member, AIRROW 

Consumer 

Joseph Garcia

Prairie Band of Potawatomi

Board Member – American Indian 

Disability Technical Assistance Center 

Student, Salish Kootenai College 

Consumer 

Cordia LaFontaine 

Consumer 

Carol Locust

Eastern Band Cherokee

Indian Health Services Health Consultant 

Cultural Sensitivity Trainer & Consultant 

Consumer 

Danny Lucero 

Navajo/Apache Nations 

Vice President, Intertribal Deaf Council


Gallaudet University


Consumer


David Miles 

Nez Perce Tribe 

Director, Nez Perce Vocational Rehabilitation Services 

Board Member for the Idaho State Independent Living Council 

Board Member for the Idaho State Rehabilitation Council 

Damara Paris 

Cherokee 

President, Intertribal Deaf Council 

Consumer 

Andrea Siow 

Hopi Nation 

Consumer 

H. Sally Smith 

Tribal Leader 

Alaska Native Health Board 

National Indian Health Board 

Raho Williams 

Navajo Nation 

Independent Living Specialist


San Juan Center for Independence


Consumer


Alvin Windy Boy 

Chippewa-Cree 

Tribal Leader


Rocky Boy Reser vation


v

Toolkit Table of Contents


Getting Started 

Welcome to the Toolkit 1


How many Indians live on tribal lands? 2


Did you know at least 555,000 Indians live with disabilities? 2


What is a disability? 3


What disabilities do we find in Indian communities? 4


Barriers and Challenges 5


References 8


Healthy Living 

Background 9


Health Care 11


Indian Health Service 12


Medicaid 14


Medicaid Home- and Community-Based Services (HCBS) 16


Medicare 18


State Children’s Health Insurance Program (SCHIP) 19


Sports and Recreation 20


References 22


Appendix 25


Education 

Background 27


Federal Special Education Law 28


Individualized Education Programs 28


Tips for Parents at IEP Meetings 29


vi 
IEP Checklist 30


Problem Solving 31


Office of Special Education Programs 31


Strategic Direction 1 32


Strategic Direction 2 33


Strategic Direction 3 34


Strategic Direction 4 36


Strategic Direction 5 38


OSEP-Sponsored Resources 39


IDEA Partnerships 40


Technical Assistance Alliance for Parent Centers 42


Technical Assistance and Dissemination Network—Minorities 43


References 46


Independent Living 

Background 49


Model Approaches 51


ASSIST! to Independence 52


Native American Independent Living Ser vices (NAILS) 53


Native American Advocacy Project (NAAP) 54


Resources 56


Federal Funding for Independent Living Centers 56


Statewide Independent Living Councils 57


Local Independent Living Centers 57


Independent Living Advocacy 58


References 60


Vocational Rehabilitation and Employment Resources 

Background 63


VR Service and Employment Basics for the Consumer 64


Qualifying for Vocational Rehabilitation Services 64


Ticket to Work 65


Employment Protections 65


How to File Complaints 66


Consumer Disability Resources 68


vii

Mental Health 69


Alcohol and Substance Abuse 70


Spinal Cord Injury 71


Traumatic Brain Injury 73


Tribal VR Program Resources 75


References 81


Assistive Technology 

Background 83


Model Approaches 83


ASSIST! to Independence 86


Native American Advocacy Project (NAAP) 87


Resources 88


State Assistive Technology Financial Loan Programs and


Other Loan Programs Serving Native Americans 89


General Assistive Technology Resources Available to Native Americans 89


Assistive Technology Advocacy 89


References 91


Housing and Facilities 

Background 93


The Basics of Universal Design 94


Assessing Service Needs 96


Model Approaches 97


Making Plans a Reality 99


Whom do I contact first for help in making my home or work


place accessible? 100


What legislation impacts housing for tribal members with disabilities


and how do I file a complaint if the laws are not being honored? 100


Where do I learn more about universal design? 102


Whom can I contact for technical assistance, training needs, networking


opportunities, and research information on housing? 103


What types of funding are available for tribal housing programs looking


to create accessible facilities for tribal members, and how do I apply? 107


References 109


viii 
Transportation 

Background 111


Assessing Service Needs 112


Definitions 113


Model Approaches 115


Pueblo of the Zuni 116


Confederated Salish and Kootenai Tribes 117


Other Programs 118


Making Plans a Reality 118


How do you find out about transportation services in your area? 119


What do you do if there are no transportation services in your area? 120


How do you assess the transportation needs and develop a service


network in your community? 120


How do you find funding to support transportation services


and programs? 124


Who provides assistance with compliance? 128


What legislation on the horizon could impact transportation service


funding? How do you keep informed about the impact of pending


legislation on transportation in tribal communities? 129


References 131


Key Elements of Promising Programs 

Background 133


Leadership 134


Leadership Characteristics 135


Conclusion 137


Advocating Change 

Self-Advocacy 139


Giving Voice to Your Life Choices 140


Speaking Up About Services 141


Step 1: Targeting 142


Step 2: Preparing 143


Step 3: Influencing 143


Step 4: Following Through 143


ix 
Guidelines for Writing a Resolution 144


Purpose of Submitting a Resolution 145


Resolution Format 145


Sample Resolutions 146


References 156


Federal Disability Laws and Tribes 

Background 157


Understanding Government-to-Government Relationships 157


The Americans with Disabilities Act (ADA) and Tribes 158


The Rehabilitation Act and Tribes 159


The Individuals with Disabilities Education Act and Tribes 159


Advocacy 160


References 161


National Initiatives, Federal Agencies, and National Organizations 

Background 163


Initiatives 163


Federal Disability Agencies 164


National Disability Organizations 170


References 182


Disability Etiquette Handbook 

Dos and Don’ts 184


Conversation Etiquette 185


Glossary of Acceptable Terms 187


Preparing for Sign Language Interpreters 188


Resources Regarding Interpreters 189


Service Animals 190


What Is a Service Animal? 190


Service Animal Access 192


Service Animal Etiquette 192


Service Animal Resources 192


References 194


x 
Getting Started 
Mark Az

As a child when I moved to a 

school off tribal lands I couldn't 

participate in my cultural rituals 

as powwows and ceremonies. M

was like a torn piece of paper. 

When I could reconnect these 

ceremonies and my ability to be 

a Native American and then a de

person, my life came together a

This is what I want—to help rebu

culture so everyone can do this
Welcome to the Toolkit


A powerful voice in Indian country has emerged, strongly pronouncing that American 

Indian people with disabilities do not need to be “cured” or “fixed.” In truth, equal 

access, fair accommodations, and an opportunity to make powerful contributions to 

our society are needed. 

By eliminating the barriers, American 

Indian and Alaska Native (AI/AN) people 

with disabilities can work together in 

partnership to make tribal communities 

more accessible, more caring, and more 

representative of the beautiful, unique 

contributions each individual brings to this 

world. 

Indian people with disabilities and tribal 

leaders who served together on a 

Technical Expert Panel for the National 

“Treat all men alike. 

Give them all the same law. 

Give them all an even chance to 

live and grow. All men were made 

by the same Great Spirit Chief. 

They are all brothers. The Earth is 

the mother of all people, and all 

people should have equal rights 

upon it.... 

free to travel, free to stop, free to 

work, free to trade... free to think 

and talk and act for myself.” 

Chief Joseph, Nez Perce 

Let me be a free man, 

Council on Disability (NCD) designed this Toolkit. They hope that the information, 

encouragement, and resources found in this Toolkit will help you and your community 

create the awareness, support, encouragement, and empowerment to improve the 

lives of people with disabilities and their families. 

In this Toolkit, you will find information about disabilities, Indian tribes, and 

resources. You will also find suggestions for improving services, providing 

protections, and tapping resources in local tribal communities for people with 

disabilities. This guide will focus primarily on health care, independent living, 

education, and vocational rehabilitation. In addition, resources are provided in the 

areas of housing and transportation. 

1

Each section of the Toolkit will provide specific contact information by topic for 

organizations that may be of further assistance to you. Where possible, the narrative 

describing each organization’s mission and role has been directly quoted from the 

organization’s Web site, and the Web site address has been identified in order to 

provide the most accurate and useful information. 

AI/AN people with disabilities, especially those who live in Indian country, face 

unique circumstances and legal environments that require special outreach, 

consultation, protections, and services. There is a great desire among AI/AN people 

with disabilities to work in partnership with sovereign tribal governments to make 

tribal communities and work places accessible and welcoming to people with 

disabilities. 

How many Indians live on tribal lands? 

According to the 2000 U.S. Census, nearly 2.5 million Americans identify themselves 

exclusively as “American Indian or Alaska Native.” There are 4.1 million people who 

identify themselves either as Indian only or Indian in combination with another race 

(Ogunwole, 2002). Of this total, approximately 944,433 Indian or Alaska Native 

people live on federal reservations or on off-reservation trust lands (Langwell and 

Sutton, 2002). Of the 50 states, 35 have federal reservations within or overlapping 

state borders. 

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

recognizes 560 tribes and Alaska Native villages (Ogunwole, 2002). They are known 

as “Federally Recognized Tribes.” 

Did you know at least 550,000 Indians live with disabilities? 

Data from the 1997 Survey of Income and Program Participation found that 22 

percent of the American Indian and Alaska Native population has one or more 

disabilities (McNeil, 2001). This is the highest rate of disability when compared with 

all other races in the United States. The rate of disability varies significantly by race: 

2

Race Percentage with Disabilities


U.S. all races 20%


White 20%


Black 20%


Hispanic 15%


Asian 10%


American Indian 22%


If we consider only the 2.5 million who reported on the 2000 census that they 

identify themselves exclusively as “American Indian or Alaska Native,” this means 

that at least 550,000 Indians and Alaska Natives have disabilities. 

What is a disability? 

The Americans with Disabilities Act (ADA) 

defines a disability as follows: 

The term “disability” means, with respect 

to an individual – (A) a physical or mental 

impairment that substantially limits one or 

more of the major life activities of such 

individual; (B) a record of such an impair– 

ment; or (C) being regarded as having such 

an impairment (42 U.S.C § 12101 et seq.). 

“There is no uniform definition 

of disability since government 

agencies define disability 

differently.... 

the picture, some health 

demographers do not define 

disability as completely as do 

rehabilitation demographers.” 

National Center for the Dissemination 

of Disability Research, 1999 

Further clouding 

Other, similar definitions are found in the Rehabilitation Act and the Social Security 

Act. You may find that eligibility for certain benefits, such as Social Security Income 

(SSI) for people with disabilities, may require a more rigorous definition. For example, 

the Social Security Act defines disability as follows: 

...the term ‘disability’ means (A) inability to engage in any substantial 

gainful activity by reason of any medically determinable physical or mental 

impairment which can be expected to result in death or has lasted or can 

be expected to last for a continuous period of not less than 12 months, or 

(B) blindness ... (42 U.S.C. 416 § 216 [42 U.S.C. 416] (1)(1)) 

3

While definitions vary, nearly all these definitions rely upon some measure of 

functional limitation to determine severity. This is done using activities of daily 

living (ADL) or instrumental activities of daily living (IADL). 

ADL include eating, walking, using the toilet, dressing, bathing, and 

getting in/out of bed. 

IADL include cooking, shopping, managing money, using a phone, doing 

light or heavy housework, and getting out of the home. 

Assessing the severity of a disability is done by totaling the number of ADL or IADL 

experienced by an individual (NRCNAA, 2002). 

What disabilities do we find in Indian communities? 

Every type of disability that is found in the general population can also be found in 

the AI/AN population. Several small studies have surveyed tribal communities to 

identify most frequent types of disabilities. These studies (Clay, 1992; Rural 

Institute on Disabilities, 1995; AIDLP, 2000) generally found that the following 

types of disabilities are most often reported in Indian community surveys: 

•Spinal cord injury (see Vocational Rehabilitation [VR] section for more 

information) 

•Diabetes complications 

•Blindness 

• Mobility disability 

•Traumatic brain injury (see VR section for more information) 

•Deafness or hardness of hearing 

•Orthopedic conditions 

•Arthralgia 

•Emotional or mental health conditions (see VR section for more information) 

•Learning disabilities 

•Alcoholism or drug dependence (see VR section for more information) 

Not all disabilities are easily seen or can be seen at all. Many individuals have 

4

hidden or unseen disabilities, such as emotional or mental health problems, learning 

disabilities, alcohol/drug dependence, or deafness. Some people are born with their 

disability, or develop the disability early in life. Other people acquire their disability 

later in life as a result of disease, age, or injury. 

If we live long enough, we will each experience life with a disability. 

Barriers and Challenges 

Attitude: Most nondisabled people do not understand people with disabilities. Too 

often we see the disability and not the person. This is also true in our AI/AN 

communities. You can help change this! 

Lack of Awareness: There is a lack of understanding about the number of Indians 

with disabilities, the types of disabilities in Indian communities, and the various 

opportunities our tribal government and service programs have to better protect and 

assist people with disabilities in Indian country. 

Legal Enforcement Unclear: Federal laws designed to protect people with disabilities 

are not always enforceable against tribal governments because of the sovereign 

immunity and sovereign status of tribal governments. This does not mean that all 

enterprises located on tribal lands are exempt from federal laws, only that tribal 

governments are unique. Many tribes have opted to adopt their own ordinances and 

codes to protect Indian people with disabilities within the tribal system. 

Rural Transportation: Most tribal lands are located in rural and remote areas of the 

United States and lack public transportation systems, which could provide people 

with disabilities with access to transportation and increased independence. 

Rural Infrastructure: Tribal communities may not have the infrastructure to support 

access and accommodation for people with disabilities, such as sidewalks and 

sidewalk ramps for wheelchair access. Tribal communities may lack access to highspeed Internet or the means to acquire assistive technology for people with 

disabilities. 

5

Public Access: Tribal and federal office buildings that serve the community are not 

always accessible for people with disabilities. Some tribes may lack the resources to 

retrofit their buildings to accommodate people with disabilities. 

Complex Federal Programs: There are a variety of federal and state programs that 

can be important resources for people with disabilities on tribal lands. These 

programs may have overlapping or conflicting responsibilities and must be navigated 

with dogged determination. Don’t take “no” for an answer. 

State Relationships: Relationships between tribes and states can be strained 

because of overlapping or conflicting jurisdictions and other issues. States may offer 

many services and programs that can be helpful for people with disabilities and their 

families living in Indian country. It is important to remember that while tribes are 

sovereign governments, their members are also citizens of the state and of the 

United States and are entitled to access state programs. 

Education Systems: The majority of AI/AN children are educated through the public 

school systems in each state. The balance of Indian children are educated in tribally 

operated schools or federal schools run by BIA. As a result, a variety of entities may have 

some level of responsibility for children with disabilities in our schools (Pavel, 1995). The 

Individuals with Disabilities Education Act (IDEA) requires public schools and BIA to 

provide children with disabilities with a free appropriate education based upon an 

Individualized Education Program for each child. This is the law. Parents of Indian 

children with disabilities may not be aware of the services and support their children are 

entitled to receive and may not know how to advocate for their children effectively. 

Employment: Federally recognized Indian tribes are specifically exempt as employers 

under Title I of ADA, which prohibits discrimination against qualified individuals with 

disabilities in employment and requires that employers make reasonable 

accommodation for employees with disabilities (42 U.S.C. §§ 12101 et seq.). This 

exemption is a barrier for Indians with disabilities in Indian country, particularly in 

rural areas where tribal governments are the largest employer. Some tribal 

governments have voluntarily complied with ADA or adopted their own codes to 

protect people with disabilities from employment discrimination. 

6

Housing: Homes are not generally designed to meet the needs of people with 

disabilities. There is limited funding at the tribal level to cover the cost of retrofitting 

tribal or private housing. This housing barrier can mean the difference between an 

individual with disabilities living independently or living under the care of others. 

Every home should have some means for “visitability” for people with disabilities. 

Service Coordination and Advocacy: Indian people with disabilities do not always 

have a central location where services are coordinated within tribal settings. This 

can present a major barrier, particularly for individuals with disabilities who have 

multiple needs, such as housing, health care, vocational rehabilitation, and 

advocacy. 

Personal Care Assistance: Just getting out of bed, bathed, dressed, and out of the 

house could present major barriers for some people with disabilities. Yet, with the 

support of a personal care attendant, many people with disabilities have been able 

to demonstrate their value as members of the tribal workforce. Much more can be 

done in Indian communities to provide home- and community-based services. 

7

References 

American Indian Disability Legislation Project (AIDLP) Research and Training Center 

on Rural Rehabilitation Rural Institute on Disabilities. (2000). Missoula: University 

of Montana Rural Institute. 

Clay, Julie. (1992). A profile of independent living services for American Indians with 

disabilities living on reservations. Missoula: University of Montana Rural Institute. 

Langwell, Kathy, and Janet Sutton. (2002). People with disabilities on tribal lands: 

Education, health, rehabilitation, and independent living literature review. 

Washington, DC: National Council on Disability. 

McNeil, J. (2001). Americans with Disabilities 1997. Current Population Reports: 

U.S. Census Bureau. 

National Center for the Dissemination of Disability Research (NCDDR). (1999). A 

review of the literature on topics related to increasing the utilization of 

rehabilitation research outcomes among diverse consumer groups. Retrieved 

November 4, 2002, from www.ncddr.org/du/products/dddreview/toc.html. 

National Resource Center on Native American Aging (NRCNAA). (2002). Functional 

Limitations and the Future Needs for Long Term Care. Grand Forks: University of 

North Dakota. 

Ogunwole, Stella U. (2002). The American Indian and Alaska Native population: 

2000. Census 2000 Brief: U.S. Census Bureau, 1. 

Pavel, D. Michael. (1995). Comparing BIA and tribal schools with public schools: A 

look at the year 1990-91. Journal of American Indian Education 35(1). 

Rural Institute on Disabilities. (1995). American Indians and Disability. Rural Facts, 2. 

8

Healthy Living 
Damara Paris 

My disabilities are perceived by 

HEALTHY LIVING 

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? 
Healthy Living


Background 

Healthy living expands the scope of health care by integrating a wellness approach, 

including sport and recreation activities. Wellness involves the mind, body, spirit, 

and context of the individual. Many Native American cultures emphasize harmony 

between mind, body, spirit, and one’s relationship with one’s community and the 

environment. In this way, today’s health and wellness model may be highly 

compatible with the values of tribal members with disabilities. 

Today’s wellness model focuses on the optimal functioning of individuals regardless 

of disability or health status. Wellness spans a continuum that is unique to each 

individual and his or her context—a context composed of environmental factors such 

as culture, community, family, social networks, social history, and physical 

environment. More specifically, health and wellness may be measured in the 

following ways: the ability to function and have the option to do what one wishes; 

being independent and having self-determination with regard to choices, 

opportunities, and activities; having physical and emotional states of well-being; and 

not being held back by pain. Individual factors relating to health and wellness are 

• Pain management 

• Rest 

• Exercise 

• Nutrition 

• Weight 

• Skin care 

• Medication 

9

• Bodily functioning 

• Sexuality 

• Aging 

• Attitude 

• Identity 

• Beliefs 

• Self-determination 

• Social contribution 

• Consumer knowledge 

• Personal growth and development 

• Health management 

• Social support 

• Employment 

• School 

• Accessibility accommodation 

• Personal assistant services 

• Housing 

• Transportation 

• Knowledge and sensitivity of others, including health care providers 

• Alternative/complementary medicine 

Thus, individuals define their own wellness, which is based on individual 

circumstances and viewed holistically (ILRU, 2002). 

The following section will describe the health or medical care support available for 

individuals with disabilities living in Indian country as well as provide an overview of 

the recreation and sport opportunities that also exist. 

10

Health Care 

People with disabilities depend upon health care systems to provide high-quality


health services in accessible and appropriate settings. All Indian Health Service (IHS)


and tribal health care facilities should be accessible for patients with mobility,


sensory, or cognitive disabilities. Patients with


hearing and visual disabilities should be able to


access and communicate with their health care


provider systems. Ramps, doorways, exam rooms,


and restrooms must be accessible. Staff should be


trained and prepared to effectively serve people


with disabilities in the clinic.


IHS and tribal health care providers should review


their health care system to ensure that the


challenges faced by many Indians with disabilities


are addressed and considered.


Never take “No” 

for an answer! 

Even if you are declined 

for benefits, you should 

appeal that decision and 

work with an advocate or 

your local office to get any 

additional information 

you need to qualify. 

Resources to meet the health care needs of Indians with disabilities are available


through several existing programs. These programs are described below. Many of


these programs can be used in combination with each other to provide an array of


services most beneficial for the patient.


IHS and tribal health care programs can seek certification to bill for many services


paid for by Medicaid, Medicare, or State Children’s Health Insurance Program (SCHIP)


and provide these services directly to patients in the clinics or through a home- and


community-based services (HCBS) model. This is important for patients with


disabilities who may require long-term care services.


11

Indian Health Service 

AI/AN people have a unique relationship with the Federal Government. This 

relationship stems from Article I, Section 8 of the U.S. Constitution and is affirmed 

through numerous treaties, federal laws, Supreme Court decisions, and executive 

orders. A significant component of this relationship is the Federal Government’s 

responsibility to provide health care services to Indian people. 

The Federal Government carries out this responsibility through IHS, an agency within 

the Department of Health and Human Services (HHS). IHS is the primary health 

provider and health advocate for AI/AN people, and its goal is to raise their health 

status to the highest possible level. Unfortunately, IHS funding is never adequate for 

the challenge, and services are often rationed at the local level. 

IHS is composed of 12 regional administrative offices known as Area Offices. Within 

each of these Area Offices, locally administered Service Units coordinate health 

services for tribal beneficiaries. Across the United States there are over 151 

individual Service Units. Some Service Units are administered by the Federal 

Government, and some have been contracted by tribes, under the Indian SelfDetermination Act (PL 83-638). 

There are no “guaranteed benefits” for IHS patients. Services vary from one IHS/ 

tribal clinic, health station, or hospital to the next. You must check with your local IHS 

or tribal health program to know which services are available. Services could include 

• Outpatient medical services 

• Inpatient hospital or specialty services (direct or referral) 

• Dental services 

• Mental health services 

• Pharmacy and laboratory services 

• Home nursing visits 

• Community health representative visits 

• Transportation 

12

Eligibility for IHS Direct Services: To be eligible for “direct services” provided by the 

IHS directly or by a tribe, which administers services on behalf of the IHS, a person 

must be a member or a descendant of a federally recognized tribe. To be recognized 

as a descendant, an individual must show that he/she 

•	 Is regarded by the community in which he/she lives as an Indian or Alaska 

Native; 

•	 Is a member, enrolled or otherwise of an Indian or Alaska Native tribe or group 

under federal supervision; 

• Resides on tax-exempt land or owns restricted property; 

• Actively participates in tribal affairs; or 

• Has any other reasonable factor indicative of Indian descent. (IHS, 2002) 

In addition, IHS allows Indians of Canadian or Mexican origin who are recognized by 

any Indian tribe or group as a member of an Indian community served by the Indian 

program to also be eligible for IHS services. In certain cases, non-Indians can also 

be eligible for IHS services: for instance, a non-Indian woman who is pregnant with 

an eligible Indian’s child or, in cases of public health hazard or acute infectious 

diseases, a non-Indian member of an eligible Indian’s household. 

Eligibility for IHS Contract Health Services (CHS): In cases where IHS or a tribal 

facility cannot provide within its own facility certain inpatient or specialty medical 

services, IHS can refer a patient to an outside or private provider. In these cases, the 

private provider or hospital will bill IHS for services to the patient. Due to limited 

funding, eligibility requirements for CHS are stricter than for services provided at an 

IHS or tribal facility. IHS/CHS eligibility requires that the IHS eligible patient also 

reside within a defined Service Delivery Area, which usually includes the counties 

overlapping or bordering the tribal reservation. It is important to note that prior 

approval from the IHS or tribal clinic is required for each CHS eligible service visit. 

Close coordination with the IHS or tribal clinic is required to effectively utilize CHS 

services. 

13

How do I enroll? Your first visit should be with the IHS or tribal health clinic to 

register as a patient. You might be asked to name your tribe of enrollment or the tribe 

from which you descend on the registration form. In some cases, you might be asked 

to show your tribal identification card. For more information you can visit the IHS Web 

site at www.ihs.gov. 

Medicaid 

Medicaid is a federal program administered by the states. It was enacted in 1965 to 

pay for medical care for certain individuals with low income or lack of resources. For 

Indian and Alaska Native communities, it can help fill the gap in providing resources 

that might not be available through the IHS. It is also important to know that the IHS 

or tribal health clinic can bill Medicaid for services provided to Indian patients who 

are enrolled in Medicaid. This helps your local Indian clinic expand services. 

Am I eligible? States decide who is covered, how providers get paid, and what 

services are covered under Medicaid. Eligibility can vary from state to state. At a 

minimum, the Federal Government requires states to cover 

•	 Families with children who meet the Aid to Families with Dependent Children 

(AFDC) requirements in place on July 16, 1996 (former AFCD program) 

• Poverty-level pregnant women and children 

• People with disabilities who are enrolled in SSI 

If an Indian or Alaska Native is enrolled in Medicaid, that program is required to pay 

for services before the IHS pays. Courts have determined that IHS is the “payer of 

last resort.” States cannot restrict Medicaid eligibility based on medical condition, 

type of services needed, or place of residence. 

Financial eligibility for Medicaid will be determined upon a review of income and 

resources. Most states use Supplemental Security Income (SSI) as the basis for 

determining financial eligibility, while some states develop their own formula to 

determine income and resources (Dixon, 2002). 

14

What services are covered under Medicaid? Unlike IHS, Medicaid programs have a 

“defined benefits package” that each enrollee is entitled to receive. You can get 

these services at your local IHS clinic or at another clinic or facility. These packages 

vary from state to state, and some states might require a nominal co-payment by the 

patient for certain services. 

Medicaid Mandated Services (states must cover): 

• Inpatient hospital services 

• Outpatient hospital services 

• Physician services 

• Nursing facility services for individuals age 21 and older 

• Home health services for anyone entitled to nursing facility care 

• Early and periodic screening, diagnosis, and treatment (for persons under age 

21) 

• Nurse-midwife services 

• Family planning services 

• Pediatric or family nurse practitioner services 

• Other laboratory and X-ray services 

• Dental services that would be covered if performed by a physician 

• Intermediate care facility for mentally retarded 

• Doctor of osteopath services for children under age 21 and pregnant women 

Medicaid Optional Services (states can opt to cover): 

• Nursing facility services for persons under age 21 

• Home- and community-based services 

• Hospice services 

• Chiropractic services 

• Private-duty nursing services 

• Dental services 

• Physical therapy 

• Occupational therapy 

15

• Services for people with speech, hearing, and language disorders 

• Prescription drugs 

• Prosthetic devices 

• Eyeglasses 

• Diagnostic, screening, prevention, and rehabilitation services 

• Personal care services 

• Pediatric immunizations 

• Tuberculosis-related services 

• Transportation 

• Targeted case management services 

• Institution for mental disease for individuals age 65 and over 

• Inpatient psychiatric services for individuals under age 21 

Making Medicaid Work for People with Disabilities: It is important to check with 

your state or local Medicaid Agency to see which services are covered. The Federal 

Government requires that home health services be provided if authorized by a 

physician. Services could include nursing, home health aides, medical supplies, 

medical equipment, and appliances suitable for use in the home (Dixon, 2002). 

Further, states can opt to expand this list to include personal care services, physical 

therapy, occupational therapy, speech pathology, audiology, rehabilitation, privateduty nursing, and transportation. 

How do I enroll? Many IHS or tribal health clinics have business office staff or 

benefits coordinators who will help you fill out the necessary forms to apply for 

Medicaid enrollment. You can also go directly to your local, county, or state Medicaid 

office to apply. 

Medicaid Home- and Community-Based Services (HCBS) 

We used to think of long-term care as nursing home care. While nursing home care 

can be appropriate for some individuals, it is no longer the only option. In 1981, 

federal law was amended to allow state Medicaid programs to include HCBS waivers 

16

(Social Security Act, Sect. 1915(c)). Today, all 50 states have implemented some 

type of HCBS waiver as an alternative to institutionalizing the elderly and people with 

disabilities. 

The move to support de-institutionalizing people requiring long-term care received an 

important boost from the U.S. Supreme Court in 1999, when it ruled in Olmstead v 

L.C. (527 U.S. 581) that Title II of ADA requires states to provide community-based 

treatment for persons with mental disabilities when the providers determine that 

institutional care is inappropriate. The practical effect has been that states must now 

provide the “least restrictive care” for people with disabilities. 

What can tribes do? Tribal health programs should review their state HCBS plans to 

see how tribally administered home- and community-based services can be paid 

through Medicaid reimbursement. In addition to the medical services offered by state 

Medicaid programs, states can also opt, by waiver, to provide case management, 

homemaker, home health aide, personal care, adult day health services, habilitation, 

respite care, and other related services. HCBS waiver programs may also provide 

services designed to foster independence, train family caregivers, and enable the 

individual to stay at home. 

Who is most at risk for institutionalization? Unfortunately, the misuse of nursing 

homes, unnecessary physical restraints, and excessive referrals to large institutions 

has been a problem in communities across the United States for our elderly and 

people with severe disabilities (Shapiro, 1994). Those most at risk include the 

elderly, technology-dependent children, persons with traumatic brain injuries, persons 

with mental retardation or developmental disabilities, Alzheimer’s patients, and 

others with severe disabilities (CMS, 2001). 

Special Provisions for Children: Medicaid’s Early and Periodic Screening, Diagnosis 

and Treatment (EPSDT) program serves as Medicaid’s well-child program, providing 

regular screening, immunizations, and access to care. When a problem is identified, 

EPSDT is used to confirm the diagnosis and cover appropriate treatment. EPSDT pays 

for the services. A state’s HCBS waiver program can be used to provide Medicaid 

eligibility to children whose parents’ income and resources exceed the usual 

thresholds. Such a waiver allows states to provide care at home or in their 

17

communities to children who would otherwise be eligible for Medicaid only if they 

were institutionalized. States try to coordinate their HCBS and their EPSDT programs 

to look out for the best interests of the child and to make sure their special needs 

are met (CMS, 2001). 

Medicare 

Medicare is a federal program administered by the Federal Government though the 

Centers for Medicare and Medicaid Services (CMS). Medicare provides federal 

“health insurance” for hospital care (Part A) and medical care (Part B). In both 

programs, there can be some level of deductibles and co-insurance that must be 

paid by the patient. Medicare also provides preventive care benefits, including flu 

shots, mammogram screening, women’s health screening, diabetes education, 

colorectal cancer screening, bone mass testing, and prostate test screening. 

Part A coverage includes 

• Hospital care 

• Skilled nursing facility care 

• Home health care 

• Hospice care 

Part B coverage includes 

• Physician services 

• Durable medical equipment 

• Kidney dialysis and kidney transplants 

• Outpatient hospital services 

• X-rays and laboratory tests 

• Limited ambulance benefits 

Medicare does not generally cover costs associated with long-term care. The number 

of days of continuous care is limited under Medicare. Long-term care is generally 

covered by Medicaid. 

18

Am I eligible for Medicare? Medicare provides coverage for certain types of health 

care services for the following groups of people: 

• People age 65 or older 

•	 Some people with disabilities (if receiving Social Security disability benefits for 

24 months prior) 

•	 People with end-stage renal disease (permanent kidney failure requiring dialysis 

or transplant) 

If you are a person with disabilities and are under 65, and you have been entitled to 

Social Security disability benefits for at least two years, you will be automatically 

entitled to Medicare Part A beginning the 25th month of disability benefit 

entitlement. 

How do I enroll? The Social Security Administration handles Medicare eligibility and 

enrollment. You can contact the Social Security Administration at 1-800-772-1213 to 

enroll in Medicare or to ask questions about your eligibility. You can visit their Web 

site at www.ssa.gov or at www.medicare.gov. 

State Children’s Health Insurance Program (SCHIP) 

SCHIP was established by the Federal Government and is administered by the states, 

much like the Medicaid program. It is intended to be more flexible than the Medicaid 

program, but this varies from state to state. Some states will use their SCHIP dollars 

simply to expand their Medicaid program. Other states have established a standalone SCHIP program that targets children who might not be eligible for Medicaid but 

who still lack health insurance because of low income. You need to check with your 

local, county, or state health offices and ask about SCHIP coverage to know what is 

available in your state. Remember, federal law prohibits states from charging copayments for SCHIP coverage to Native American children enrolled in the program. 

States are allowed to charge co-payments for SCHIP coverage, but not to Indian 

children. 

19

Am I eligible for SCHIP? Your child or children might be eligible for SCHIP. Some 

states allow the entire family to be covered; most states cover only the children 

(www.cms.gov). The program is for children who do not currently have health 

insurance (IHS is not considered health insurance). Even if you are working, your 

child might still be eligible. Most states insure children up to 18 years old whose 

families earn up to $34,100 a year (for a family of four). 

How do I enroll? You should contact your local IHS or tribal clinic to see if they will 

help you enroll your child or children in SCHIP. Remember, Indian children have no 

co-payment requirements under this program. You can also contact your local county 

or state health offices to enroll in SCHIP. For more information, see the SCHIP Web 

site at www.cms.gov/schip. 

Sports and Recreation 

Many options are available for people with disabilities with regard to recreation and 

sports. Community trips to movies and theater, spectator sports, sightseeing tours, 

museums, concerts, shopping, restaurants, and clubs help individuals with 

disabilities problem-solve, transfer therapy skills, and cope with real-life situations, 

especially as part of a rehabilitation program. Camps and camping are also 

important and popular forms of recreation for people with disabilities, and many 

organizations have camps designed for the special needs of people with disabilities. 

Sporting activities and organizations for people with disabilities include the following: 

• Aquatics • Boccia • Horseback 

• Archery • Bowhunting riding 

• Aviation • Bowling • Hunting 

• Badminton • Cycling • Lawn bowling 

• Baseball • Dance sport • Martial arts 

• Basketball • Fencing • Orienteering 

• Billiards • Fishing • Power 

• 

• 

• 

• 

• 

Goalball 

Golf 

Gymnastics 

Handball 

Hockey (floor, 

ice, ice 

sledge, 

sledge, and 

sled) 

20

As for sports programs, national, community, high school, and collegiate sports 

programs are primarily designed for people without disabilities. However, people with 

disabilities are frequently integrated into these “conventional” sports programs. 

There are advantages to integration as these programs usually have better coaching, 

better facilities, and more intensive training for their participants. In fact, ADA 

requires that community programs be accessible to people with disabilities, and IDEA 

requires that public school intramural and interscholastic sports programs be 

available to individuals with disabilities (Disability Sports, 2001b). 

In 2001, HHS made increasing the number of physically active individuals with 

disabilities a public health priority. Research indicates that the benefits for anyone 

engaged in regular exercise (3 or more days per week for 20 or more minutes) are as 

follows: 

• Physiological and psychological benefit 

•	 Increased health-related physical fitness such as cardiovascular endurance, 

muscle strength, muscle endurance, and flexibility 

• Weight control and the prevention of obesity and other health-related conditions 

•	 Psychological benefits such as decreased anxiety and depression with 

improvements in emotions, self-esteem, and self-confidence (ILRU, 2001) 

For people with disabilities, especially those with spinal cord injuries, vigorous 

physical exercise and sports (e.g., wheelchair sports such as basketball, bowling, 

track and field, swimming, archery, table tennis, softball, football, marathons, and 

rugby) are highly beneficial for 

• Stimulating circulation 

• Helping to prevent skin breakdown 

• Increasing fluid intake 

• Promoting self-worth and mental health 

• Improving the immune system and overall health 

•	 Reconnecting with the past and supporting a patient’s construction of an 

identity following the injury 

•	 Enhancing physical performance and inducing positive physiological 

adaptations 

21

• Increasing community integration (PoinTIS, 2002) 

Unfortunately, people with disabilities wishing to participate in sports are faced with 

numerous barriers: 

•	 Sometimes people with disabilities find it difficult to believe in their abilities 

and to view themselves as athletes. 

•	 Acceptance by teammates, coaches, officials, and sports administrators 

usually must be earned through performance, sportsmanship, and work ethic. 

A positive example from a team coach can help in this area. 

•	 Access to quality coaching, programs, sports sciences services, and 

accessibility can be difficult. Many coaches and program directors still find 

difficulty in viewing athletes with a disability as deserving of attention and 

expertise. 

•	 Athletes with disabilities frequently experience greater financial burdens 

associated with sports participation than nondisabled athletes because of 

increased costs associated with specialized equipment, personal assistance, 

insurance, and travel. (Disability Sports, 2002) 

For tribal members with disabilities living on reservations, these barriers can seem 

insurmountable. However, organizations and resources are available to tribal 

members with disabilities who wish to participate in sports and recreational 

activities. In addition, tribal members with disabilities can also contact the nearest 

independent living center (ILC) for sports and recreation opportunities. 

References 

Center for Medicare and Medicaid Services (CMS). (2001). Fact Sheet: Home and 

Community Based Services. Washington, DC: CMS. 

Disability Sports. (2002). Barriers to participation. Retrieved October 21, 2002, 

from http://ed-Web3.educ.msu.edu/kin866/issbarrier.htm. 

Disability Sports. (2001b). Inclusion in “regular” sports programs. Retrieved 

October 21, 2002, from http://ed-Web3.educ.msu.edu/kin866/orgregular.htm. 

22

Dixon, Mim. (2002). Opportunities for Medicaid financing of long term care in 

American Indian and Alaska Native communities. American Indian and Alaska 

Native Roundtable on Long Term Care: Final Report. Indian Health Service, 26. 

Independent Living Research Utilization (ILRU) at TIRR. (2002). Definitions of health 

& wellness. Retrieved October 18, 2002, from www.ilru.org/healthwellness/ 

healthinfo/wellness-definition.html. 

Independent Living Research Utilization (ILRU) at TIRR. (2001). Physical activity, 

motivation and people with disabilities. Retrieved October 18, 2002, from 

www.ilru.org/online/handouts/2001/Kosma/motivating.html. 

Indian Health Service (IHS). (2002) Eligibility requirements for health services from 

the Indian Health Service. Retrieved November 4, 2002, from www.ihs.gov/ 

GeneralWeb/HelpCenter/CustomerServices/elig.asp. 

PoinTIS Spinal Cord Injury Recreational Therapy. (2002). Recreational activities: 

Community trips, sports, independent living. Retrieved October 18, 2002, from 

http://calder.med.miami.edu/providers/RECREATIONAL/rec2.html. 

Shapiro, Joseph P. (1994). No Pity. New York: Times Books. 

23

Appendix

25
26
Education 
I believe Creator prepares us b

what we go through, and my 

personal experiences have helped 

me build a toolkit of my abilities. Th

perspective I think we need to tak

is a national perspective, which is no

just about our own tribe but abou

all native people. 

LaDonna Fowl

EDUCATION 
27

Education 

Background 

“There are approximately 500,000 American Indian and Alaska Native (AI/AN)

students attending K-12 schools in the United States. Of the 500,000 AI/AN

students, the majority (approximately 90 percent) attend public schools. The

remaining 10 percent attend schools operated or funded by the Bureau of Indian

Affairs (BIA) and Tribes” (Faircloth and Tippeconnic, 2000, p. 1). The Twenty-second

Annual Report to Congress on the Implementation of the Individuals with Disabilities

Education Act (U.S. ED, 2000) reports that “American Indian students represent 1.0

percent of the general population and 1.3 percent of special education students.

American Indian students slightly exceeded the national average in nine disability

categories, reaching the largest percentages in the categories of deaf-blindness (1.8

percent) and traumatic brain injury (TBI) (1.6 percent).” These statistics suggest that

AI/AN students are slightly over-represented in the special education population

(Faircloth and Tippeconic, 2000).

For centuries now, educating Indian children has been a primary focus of government

agencies and tribes. Boarding schools and other public education institutions have

significantly affected the Indian community and how we look at education. The

education of AI/AN children has reached crisis proportions as reflected in national

and state data trends. So what happens to children with disabilities living in Indian

country? What resources are available to children and parents?

The following section is designed to assist you by outlining federal education laws,

by providing practical tips for parents, and by providing resources for technical

assistance and protection.
28

Federal Special Education Law 

On January 8, 2002, the federal law No Child Left Behind was signed by the President

of the United States. This law holds educators, elected officials, policymakers, and

parents accountable in an attempt to close the academic achievement gap between

high- and low-performing students. The No Child Left Behind law allows parents to

become involved in the development of district policies and plans for their child’s

education. Parents and community leaders can participate in school improvement

efforts. This new law affects every school district in the country (Public Education

Network, 2003). This law is especially important for rural, isolated schools such as

those serving AI/AN children living on or near Indian country. Too many children are

being left behind, and AI/AN children have historically fallen way below the national

average in academic achievement compared with non-Indian children.

No Child Left Behind, in concert with IDEA, the federal special education law, can

provide parents with new tools to ensure that their child’s special education needs

are being met. The Office of Special Education Programs (OSEP) administers IDEA,

which guides the entire special education process. Special education programs

follow rules and regulations set by federal and state governments. IDEA is

implemented locally in all parts of the United States. As part of this law, OSEP of the

U.S. Department of Education is responsible for meeting with each state and U.S.

entity, including BIA, the Office of Indian Education Programs, and the Branch of

Exceptional Education to ensure that the requirements of the law are being

adequately met. Special education services in your area must meet these federal as

well as local and state IDEA regulations (FAPE, 2002). The Act is authorized through

2002; the reauthorization process will be taken up in early 2003.

Individualized Education Programs 

IDEA requires public school systems and BIA-funded schools to develop appropriate

Individualized Education Programs (IEPs) for each child. The specific special

education and related services outlined in each IEP reflect the individualized needs

of each student. IDEA also mandates that particular procedures be followed in the

development of the IEP. Each student’s IEP must be developed by a team of
29

knowledgeable persons and must be at least reviewed annually. The team includes

the child’s teacher; the parents (subject to certain limited exceptions); the child (if

determined appropriate); an agency representative who is qualified to provide or

supervise the provision of special education; and other individuals at the parents’ or

agency’s discretion (DOJ, 2001).

Tips for Parents at IEP Meetings 

The Arizona Center for Disability Law’s Client Assistance Program (2002) offers both

the tips and checklist that follow for parents who are working with their child’s school

to create an IEP that meets the unique needs of their child.

In arranging IEP meetings, you should remember the following:

•You or the school can ask that an IEP meeting be scheduled.

•Meetings to plan or review your child’s IEP should be held when you can attend.

•- If you cannot attend a meeting that has been scheduled, call the school

immediately and ask that the meeting be rescheduled.

•- The notice of the meeting should state the purpose, date/time, location, and

participants of the meeting.

•Ask for an interpreter, if needed.

Prior to the IEP meeting you may prepare by doing the following:

•Set up an appointment to go to the school to review your child’s school records.

•Ask for a copy of a blank IEP form so that you know what will be discussed.

•Get a copy of the school’s proposed IEP, if one has been prepared.

•Get information and help from other parents or advocacy groups.

•Make a list of questions and comments to take to the meeting.

At the meeting you can be an effective team member in the following ways:

•By participating by a telephone call or a letter, if you cannot attend the meeting.

•- By reminding the school, if necessary, that you will not sign a prepared IEP but

wish to be involved in writing the IEP.
30

•By asking questions and sharing knowledge about your child with the team.

•By remembering that you may tape-record the meeting.

•- By remembering that you may bring another parent, interested professional, or

trained advocate with you.

•By knowing your child’s rights and discussing these rights with the team.

At the close of the meeting

•- Be certain that you understand your child’s IEP. If you don’t understand the IEP,

ask the school to explain the services.

•Obtain a copy of the IEP.

•- Though you should try to cooperate with the school, do not sign the IEP if it

does not meet your child’s needs.

•- Request a due process hearing if you do not agree with the plan offered by the

school (contact an advocate before requesting the hearing).

•Remember that the IEPs should be reviewed at least once per year.

IEP Checklist 

Your child’s IEP should contain all of the following:

•Information about the child’s strengths and needs

•Measurable annual goals

•- Short-term instructional objectives (short teaching steps that the team

develops to allow each student to reach his/her annual goals)

•- Services to be provided (including any related services needed to benefit from

the school program such as transportation, physical therapy, occupational

therapy, speech therapy, counseling, psychological services, or interpreter)

•Date each service will begin and end

•How progress will be measured

•Progress reports as often as children without disabilities receive them

•- An explanation of the extent, if any, to which the child will not participate with

nondisabled children in the regular classroom

•Transition services planning (beginning no later than age 14)
31

•- Transition services programming (beginning no later than age 16) (Arizona

Center for Disability Law, 2001)

Problem Solving 

IDEA has procedures in place to allow any member of the child’s IEP team to bring a

problem to the attention of team members. The student’s parents are given rights

and protections called procedural safeguards. These rights allow parents to question

decisions made by the school regarding their children’s education (DOJ, 2001).

When disputes arise, IDEA favors solving the problem by both parties through a

process called mediation (FAPE, 2002). The Consortium for Appropriate Dispute

Resolution in Special Education (CADRE) is such an alternative that is funded by the

U.S. Department of Education. CADRE encourages the use of mediation and other

collaborative strategies to resolve disagreements about special education and early

intervention programs. CADRE uses advanced technology as well as traditional

means to provide technical assistance to state departments of education on

implementation of the mediation requirements under IDEA ’97. CADRE also helps

parents, educators, and administrators benefit from the full continuum of dispute

resolution options that can prevent and resolve conflict and ultimately lead to

informed partnerships that focus on results for children and youth (CADRE, 2002).

For a more detailed description of due process and complaint process guarantees

provided for AI/AN children and families under IDEA, please refer to the Federal

Disability Law and Tribes section of the Toolkit.

Office of Special Education Programs 

OSEP has developed five strategic directions designed to improve education results

for students with disabilities (OSEP, 2002). These directions are based on research

and outreach that focused on what is currently working for students, parents,

teachers, and schools. These directions are also closely tied to the IDEA legislation.

OSEP was in fact the sponsor of the research that preceded the legislation. The

following descriptions of the strategic directions and the brief information about the
32

projects, publications, technical assistance centers, and clearinghouses are quoted

directly from the U.S. Department of Education’s Web site in order to provide you

with the most complete information possible. More detailed information can also be

obtained by contacting OSEP directly:

Phone: (202) 205-9675

Web site: www.ed.gov/offices/OSERS/OSEP

Strategic Direction 1: Infants, Toddlers, and Their Families Receive the 

Supports They Need 

The first weeks and months of an infant’s life can significantly affect all aspects of

his/her entire life, including success in school. Data and anecdotal information

indicate that families all across the country often are not informed early enough

about the importance of early intervention. Too often children with significant

disabilities may be 2 or 3 years old before they are referred for assessment and early

intervention. Schools have a great stake in early identification and service provision

for all eligible infants and toddlers and their families. Relevantstate agencies must

develop strong interagency partnerships to ensure a continuous, effective campaign

to identify children in need of early intervention. 

It is also equally important that our youngest children and their families receive

services and supports in natural environments. Services provided in the home,

childcare, or other community-based settings are reporting positive responses from

families and the early childhood community. Moreover, children who start off in

settings with their peers who don’t have disabilities are more likely to be included

throughout their school years.

IDEAS That Work for Infants and Toddlers 

Project: “Supporting Neurobehavioral Organizational Development in Infants With

Disabilities: The Neurobehavioral Curriculum for Early Intervention”

Phone: (206) 285-9317

E-mail: mgallien@halcyon.com; anotari@wri-edu.org
33

The goal of this project is to provide curriculum for parents and professionals so that/

they can support the neurobehavioral organization of infants born with very low birth/

weight or with severe disabilities./

Project: Circle of Inclusion Web Site/

Web site: www.circleofinclusion.org/

This Web site offers demonstrations and information about the effective practices of/

inclusive educational programs for children with disabilities (birth through age eight)./

Technical Assistance Center: National Early Childhood Technical Assistance System

(NECTAS)

Phone: (919) 962-2001

TTY/TDD: (919) 962-8300

Web site: www.nectas.unc.edu

Technical Assistance Center: Technical Assistance Alliance for Parent Centers - The

Alliance

Phone: (888) 248-0822

TTY/TDD: (612) 827-7770.

Web site: www.taalliance.org

Strategic Direction 2: Preschool Programs That Prepare Children with 

Disabilities for Elementary School Success 

In 1986, half as many children attended preschool programs as today and only 24

states participated in the preschool program. Today all states have a preschool

program for children with disabilities. It is not good enough just to offer the child a

program. The program must be rigorous and prepare children for success in school.

OSEP supported a study with theNational Academy of Sciences on preventing reading

failure in young children. This study showed that a rich preschool program can make a

difference. It is also important that in those programs children have opportunities to

have an integrated experience with their nondisabled peers. We must make sure that

our preschool programs are preparing children to be successful in the primary grades.
34

IDEAs That Work for Preschool Children 

Project: Reaching Individuals with Disabilities Early (RIDE Project)

Web site: www.ovec.org/ride/Home/index.htm

RIDE is a model demonstration project with the goals of

1.- Enhancing child-find efforts in targeted school districts by distributing

multifaceted awareness packages and

2.- Helping school districts to develop local capacity in the delivery of

assistive technology services, by providing an intensive training program.

Project: Language Is the Key

Web site: www.wri-edu.org/bookplay

A video-training program designed to address the needs of professionals and

paraprofessionals who work with young children with language disorders.

Publication:Preventing Reading Difficulties in Young Children

Web site: www.nap.edu

Technical Assistance Center: National Early Childhood Technical Assistance System

(NECTAS)

Phone: (919) 962-2001

TTY: (919) 962-8300

Web site: www.nectas.unc.edu

Strategic Direction 3: Effective Intervention for Young Students with 

Reading or Behavior Difficulties 

The importance and effectiveness of strategies that intervene early in a child’s

development are well recognized in improving results for children with disabilities.

Unfortunately, approximately 60 percent of the children currently being served under

IDEA are typically identified too late to receive full benefit from such interventions.

This problem is most prominent with two specific populations of children: those

identified for special education and related services under the categories “specific
35

learning disabilities” and “emotional disturbance.” These children are often not

identified as being eligible for special education and related services until after their

disabilities have reached significant proportions. These are children who very early in

their education experience marked difficulties learning to read or exhibit behaviors

that lead to discipline problems as they get older.

A body of research on the topic tells us how to assess, identify, and help these

children. For instance, research indicates that

•- Both populations of children can be assessed and identified early and with

relative ease and accuracy;

•- Both populations of children, based on the nature of their disabilities, are at

high risk for dropping out of school, becoming discipline problems, and for

failing in school;

•- Both populations of children need valuable time that is essential to learning,

time often lost because these children do not receive appropriate services

earlier; and

•Both populations can make tremendous gains when provided with effective

services during early childhood.

In practice, however, schools and teachers simply are not prepared to implement

effective research-based practices to meet the needs of these children. We must join

with our general education partners to ensure that all children experiencing early

reading or behavior difficulties receive the services they need.

IDEAs That Work for Children with Reading or Behavioral Difficulties 

Budget Request: The President has proposed, for the fiscal year 2000 budget, a $50

million dollar initiative called PRIME TIME: Reading and Behavior Initiative that will

support demonstrations of school-based models of effective programs and practices

to serve children who have marked difficulty learning to read and/or who exhibit

behaviors that lead to discipline problems as they get older.
36

Project: National Center on Accelerating Student Learning (CASL)/

Phone: (615) 343-4782/

E-mail: lynn.fuchs@vanderbilt.edu; doug.fuchs@vanderbilt.edu/

Promoting success in reading, writing, and math in grades K–3. CASL is a five-year/

research effort designed to accelerate learning for students with disabilities./

Publication:“Early Warning, Timely Response; A Guide to Safe Schools”/

Phone: (877) 4ED-PUBS/

Web site: www.ed.gov/offices/OSERS/OSEP/earlywrn.html/

Technical Assistance Center: Center for Effective Collaboration and Practice (CECP)/

Phone: (202) 944-5454/

Web site: www.air-dc.org/cecp/default.htm/

Technical Assistance Center: Center on Positive Behavioral Interventions and Support/

Phone: (541) 346-3560/

E-mail: PBIS@oregon.uoregon.edu./

Strategic Direction 4: Appropriate Access to the General Education 

Curriculum 

It is critically important that children with disabilities have access to the same

curriculum that other children have if they are going to become successful adults.

Simply put, children with disabilities should be learning what other children are

learning in school and schools should be held accountable for results. Current

research indicates that a large number of children with disabilities are not learning

the same things in school as other children and therefore are not going to be in a

position to graduate from high school or to be successful in life. The IDEA ’97

amendments provide access to the general curriculum by requiring that states

include students with disabilities in nationwide assessments. It is important that we

manage our programs based on the results of these assessments.
37

IDEAs That Work to Ensure Access to the General Education Curriculum 

Project:- Performance Assessment and Standardized Testing for Students with

Disabilities: Psychometric Issues, Accommodation Procedures, and

Outcome Analysis

Web site: www.wcer.wisc.edu

This project focuses on how fourth- and eighth-grade students with and without

disabilities function on math and science assessments.

Publication:“A Curriculum Every Student Can Use: Design Principles for Student

Access”

Web site: http://ericec.org/osep-sp.html/

Published by the OSEP-sponsored ERIC/OSEP Special Project; ERIC Clearinghouse on/

Disabilities and Gifted Education/

Technical Assistance Center: National Center on Educational Outcomes (NCEO)/

Phone: (612) 626-1530/

Web site: www.coled.umn.edu/nceo/

Technical Assistance Center: The National Center to Improve the Tools of Educators

(NCITE)

Phone: (541) 686-5060

Web site: http://darkwing.uoregon.edu/~ncite/index.html

Technical Assistance Center: The Parents Engaged in Educational Reform Project

(PEER)

Phone: (617) 482-2915

Web site: www.fcsn.org/peer

Technical Assistance Center: Consortium on Inclusive Schooling Practices (CISP)

Phone: (412) 359-1600

Web site: www.pgh.auhs.edu/CISP
38

Technical Assistance Center: National Institute for Urban School Improvement/

Phone: (303) 620-4074/

TTY/TDD: (703) 519-7008/

E-mail: Elizabeth_Kozleski@ceo.cudenver.edu/

Strategic Direction 5: All Students with Disabilities Complete High 

School 

Despite recent U.S. Department of Education reports of improvement data, for a

number of years, national statistics have indicated that students with disabilities

drop out of school at a higher rate than nondisabled students do, and if they stay in

school, often complete their program without a standard diploma. This is still the

case in Indian country. We need to be committed to graduating special education

students with diplomas that represent the attainment of skills and knowledge

necessary to succeed in adult life. We need to remember that higher education and

lifelong learning are stepping stones for everyone. We also have to recognize that

education and employment go hand in hand. We need to prepare our students to

earn their way to success. OSEP-sponsored research has shown that monitoring

students, building adult-student relationships, increasing the student’s connection to

school, and improving student problem-solving skills, along with ensuring access to

general and vocational curricula, all play a part in increasing a student’s chances of

successful high school completion.

IDEAs That Work to Help Students with Disabilities Complete High School 

Project: The National Transition Alliance (NTA)

Web site: www.dssc.org/nta

NTA has identified over 25 promising programs from across the country addressing

dropout prevention. A database of these programs is at the Web site above. Use the

search term “dropout.” The NTA’s purpose is to promote the transition of youth with

disabilities toward desired post-school experiences.
39

Project: “Building Responsive High School Special Education Programs”

Web site: www.ced.appstate.edu/projects/special_ed

This project is working in two high schools to improve the outcomes for students with

disabilities who are at risk of dropping out.

Publication:“The ABC Dropout Prevention and Intervention Series”

Institute on Community Integration

Publications Office, University of Minnesota

150 Pillsbury Drive SE

Minneapolis, MN 55455

Phone: (612) 624-4512

A series of four booklets outlining effective dropout prevention and intervention

strategies for middle school and beyond.

Technical Assistance Center: The National Transition Alliance for Youth with

Disabilities (NTA)

Web site: www.dssc.org/nta

Clearinghouse: The National Information Center for Children and Youth with Disabilities

Web site: www.nichcy.org

Clearinghouse: HEATH Resource Center

Phone: (800) 544-3284 (voice, TTY)

Web site: www.acenet.edu/Programs/HEATH/home.html

OSEP-Sponsored Resources 

IDEA authorizes formula grants to states and discretionary grants to institutions of

higher education and other nonprofit organizations to support research,

demonstrations, technical assistance and dissemination, technology and personnel

development, and parent-training and information centers. These programs are

intended to ensure that the rights of infants, toddlers, children, and youth with

disabilities and their parents are protected.
40

Office of Special Education and Rehabilitative Services/

U.S. Department of Education/

400 Maryland Avenue SW/

Washington, DC 20202/

Phone: (202) 205-5507/

TTY/TDD: (202) 205-5637/

Web site: www.ed.gov/offices/OSERS/OSEP/index.html/

IDEA Partnerships 

OSEP funds four national projects, called IDEA Partnerships, to deliver a common

message about the landmark 1997 reauthorization of IDEA. The IDEA Partnerships,

working together for five years, inform professionals, families, and the public about

IDEA ’97 and strategies to improve educational results for children and youth with

disabilities (IDEA Practices, 2002). The IDEA Partnerships include the following:

The Council for Exceptional Children

The Associations of Service Providers Implementing IDEA Reforms in Education

(ASPIIRE)

1110 North Glebe Road, Suite 300

Arlington, VA 22201-5704

Phone: (877) CEC-IDEA

TTY/TDD: (866) 915-5000

Fax: (703) 264-1637

Web site: www.ideapractices.org

The ASPIIRE IDEA Partnership builds upon the strengths of 19 associations to assist

practitioners in providing positive outcomes for students with disabilities. ASPIIRE

utilizes collaboration to observe and learn from service providers in educational

settings and translate needs into guidance, accurate resources, and training

opportunities. Utilizing rapid-response systems with a vast information dissemination

network, the ASPIIRE IDEA Partnership acts as a pivot point for distilling complex

regulations into effective, research-based practices. The Partnership continually taps

the strengths and expertise of its members.
41

The Families and Advocates Partnership for Education (FAPE)

Partnership at the PACER Center

816 Normandale Boulevard

Minneapolis, MN 55437-1044

Phone: (888) 248-0822

TTY/TDD: (952) 838-9000

Fax: (952) 838-0199

Web site: www.fape.org

The FAPE Partnership at PACER Center aims to inform and educate families and

advocates about IDEA ’97 and promising practices. The FAPE Partnership links

families, advocates, and self-advocates to communication of the new focus of IDEA

’97. The FAPE Partnership has developed family-friendly curricula and materials

addressing the requirements of IDEA ’97, positive behavioral supports, new

research, and other issues of concern to families. These resources are also

available in multiple languages through the FAPE Web site.

The Council for Exceptional Children

ILIAD IDEA Partnership

1110 North Glebe Road, Suite 300

Arlington, VA 22201-5704

Phone: (877) CEC-IDEA

TTY/TDD: (866) 915-5000

Fax: (703) 264-1637

Web site: www.ideapractices.org

The ILIAD IDEA Partnership delivers support to the ongoing efforts of local education

administrators and leaders. As the country continues to implement IDEA, the ILIAD

Partnership brings together the preeminent educational leadership associations and

builds upon their strengths and expertise. Together these groups interact to

determine multiple vehicles for providing information, proven strategies, and

technical assistance to school districts in urban, suburban, and rural areas.
42

The Policymaker Partnership (PMP) at the National Association of State Directors of

Special Education

1800 Diagonal Road

Suite 320

Alexandria, VA 22314

Phone: (877) IDEA-INFO

Fax: (703) 519-3808

Web site: www.ideapolicy.org

PMP operates to increase the capacity of policymakers to act as informed change agents

who are focused on improving educational outcomes for students with disabilities. The

organizations that partner with PMP have profound influence in promoting excellence

and equity for students with disabilities in the public education agenda.

Technical Assistance Alliance for Parent Centers 

Parent Training Centers, funded by the U.S. Department of Education, are located all

across the country. One example of these programs is the AI/AN Families Together

Parent Training and Information Center, in Moscow, Idaho, which recruits and trains

community members to provide support and assistance to families of AI/AN children

with disabilities (NCD, 2002). Parent centers in each state provide training and

information to parents of infants, toddlers, school-aged children, and young adults

with disabilities and the professionals who work with their families. This assistance

helps parents participate more effectively with professionals in meeting the

educational needs of children and youth with disabilities. To reach the parent center

in your state, you can contact the Technical Assistance Alliance for Parent Centers

(the Alliance), which coordinates the delivery of technical assistance to the Parent

Training Centers and the Community Parent Resource Centers through four regional

centers located in California, New Hampshire, Texas, and Ohio.
43

Technical Assistance and Dissemination Network—Minorities 

The Alliance Project for Tribal Colleges and Universities

PO Box 340

Wilmot, SD 57279

Phone: (800) 984-9406

Fax: (605) 938-4786

E-mail: jim@dailypost.com

Web site: www.alliance2k.org/introduction

The Alliance Project is funded by OSEP. The Project seeks to address the increasing

demand for qualified personnel from historically under-represented groups in special

education and related services. A major emphasis of the Alliance Project is to

increase the success rate of special education and related services departments in

acquiring grants from the OSEP Division of Personnel Preparation (DPP). The purpose

of these grants is to prepare personnel in special education and related services to

meet the demand for qualified professionals and to build institutional capacity.

Alliance engages in technical assistance and information services for the

preparation of DPP grant proposals and for institutional development. Activities

include grant writing workshops, mentoring, and best practice seminars. The Project

works with faculty members in departments of general and special education, allied

health and health sciences, school psychology, and counseling at historically Black

colleges and universities, tribal colleges, and other institutions of higher education

whose enrollment includes at least 25 percent of students from historically under-

represented groups who are citizens of the United States. These groups include

Hispanics, African Americans, Native Americans, and people with Asian ancestry.

AI/AN teachers and paraeducators are needed in K–12 special education settings.

The Alliance Project for Tribal Colleges works to help meet this need. During the

initial Alliance 2000 Project, 14 tribal colleges and universities (48 percent)

submitted DPP grant proposals with Alliance assistance. Seventy-one percent of

these proposals were successfully funded.
44

Linking Academic Scholars to Educational Resources (LASER)

Department of Special Education

University of South Florida

4202 East Fowler Avenue, EDU 162

Tampa, FL 33620

Phone: (813) 974-1385

Fax: (813) 974-5542

E-mail: btownsen@tempest.coedu.usf.edu

Web site: www.coedu.usf.edu/LASER

LASER’s mission is to enhance the capacity of faculty and graduate students in

minority institutions to engage in research that affects children from minority and/or

low-income backgrounds. Access the latest research, resources, news, and events in

the field of special education. Learn about new research programs designed for

scholars who are committed to the plight of impoverished youth. Provocative online

discussions focus on urgent topics facing our nation’s most challenged schools. Join

the effort to narrow the gap between special education research and practice.

National Information Center for Children and Youth with Disabilities (NICHCY)

PO Box 1492

Washington, DC 20013

Phone: (800) 695-0285

Fax: (202) 884-8441

E-mail: nichcy@aed.org

Web site: www.nichcy.org

NICHCY’s services are made possible through funding from OSEP and operated by

the Academy for Educational Development. NICHCY shares information about

disabilities and disability-related issues regarding children and youth via their Web

site and publications. It will connect you with state and national resources, free of

charge, in English or Spanish. Anyone can use its services—families, educators,

administrators, journalists, students. Its special focus is on children and youth (birth

to age 22). NICHCY compiles disability-related resources in each state and creates

State Resource Sheets. These handy resource sheets will help you locate the
45

following people, organizations, and agencies within your state that address

disability-related issues:

•Governors and U.S. Senators/

•State agencies serving children and youth with disabilities/

•State chapters of disability organizations and parent groups/

•Parent training and information projects/
46

References 

Arizona Center for Disability Law, Client Assistance Program (CAP). (2001).

Educational rights of students with disabilities: A self-advocacy guide. Retrieved

September 27, 2002, from www.acdl.com/pdfs/SE1.pdf.

CADRE, The National Center on Dispute Resolution. (2002). Retrieved September 27,

2002, from www.directionservice.org/cadre/about.cfm.

Faircloth, Susan, and John W. Tippeconnic III. (2000). Issues in the education of

American Indian and Alaska Native students with disabilities. Retrieved September

27, 2002, from www.ael.org/eric/digests/ecord003.htm.

Families and Advocates Partnerships for Education (FAPE). (2002). The Individuals

with Disabilities Education Act (IDEA). Retrieved September 30, 2002, from

www.fape.org/idea/index.htm.

IDEA Practices On-line. (2002). Retrieved September 27, 2002, from

www.ideapractices.org/about/aspiire.php.

Langwell, Kathy, and Janet Sutton. (2002). People with disabilities on tribal lands:

Education, health, rehabilitation, and independent living literature review.

Washington, DC:National Council on Disability.

National Association of State Directors of Special Education On-line. (2002).

Implementing the No Child Left Behind Act: What it means for IDEA.Retrieved

September 27, 2002, from www.nasdse.org.

National Information Center for Children and Youth with Disabilities. (2002).

Retrieved September 30, 2002, from www.nichcy.org.

Office of Special Education Programs (OSEP), U.S. Department of Education. (1999).

Executive summary: Report of Bureau of Indian Affairs special education program

evaluation. Retrieved December 17, 2002, from www.dssc.org/frc/nmpp/

MonitoringReports/BIASelf-Assessment.pdf.

Office of Special Education Programs (OSEP). (2002). IDEAs that work: OSEP’s five

strategic directions. Retrieved September 27, 2002, from www.ed.gov/offices/

OSERS/OSEP.

Public Education Network. (2003). An action guide for community and parent leaders.

Retrieved January 6, 2003, from www.publiceducation.org/pubs/pubpreorder/

orderform.asp.
47

Technical Assistance Alliance for Parent Centers. (2002). Parent training and

information centers and community parent resource centers. Retrieved September

27, 2002, from www.taalliance.org/PTIs.htm.

U.S. Department of Education (U.S. ED). (2000). Twenty-second annual report to

Congress on the implementation of the Individuals with Disabilities Education Act

(IDEA). Washington, DC: U.S. Government Printing Office. Retrieved December 30,

2002, from www.ed.gov/offices/OSERS/OSEP/Products/OSEP2000AnlRpt/PDF/

Chapter-2.pdf.

U.S. Department of Justice (DOJ), Civil Rights Division, Disability Rights Section.

(2001). A guide to disability rights laws. Retrieved September 27, 2002, from

www.usdoj.gov/crt/ada/cguide.htm.
Independent Living 
Raho William

Sometimes when an elder leave

the home to live in an institutional 

setting their spirit is just lost. 

The foundation of the family is gon

and the cultural unity of the family 

suffers. When it is appropriate, da

care can help elders and we can se

a difference with this personal car

We have a lot of work to do to be 

recognized and know how to acces

services like these. 

INDEPENDENT LIVING 
Independent Living 

Background 

In essence, independent living is a philosophy that people with disabilities have the 

same rights, choices, and options as anyone else. It is the belief that one should 

have opportunities to make decisions affecting one’s own life and pursue activities 

of one’s own choosing. This philosophy emphasizes self-determination with an 

individual having the freedom to learn from one’s own experiences (ILRU, 2002). 

Such a philosophy marks a radical departure from the traditional rehabilitation 

perspective in which a disability is seen as a deficit and as a limitation. The 

independent living philosophy offers individuals the opportunity to choose a role 

other than victim, patient, or sufferer. In the independent living perspective, an 

individual’s disability is not the emphasis. Rather, the independent living perspective 

emphasizes the individual’s right to the types of help and assistance that the 

individual chooses. Although living on one’s own and having a job suited to one’s 

capabilities, for example, are critical aspects of independent living for many people, 

more important is the individual’s decision to live or work according to his/her own 

desire that more accurately defines independent living (ILRU, 2002). 

A comparison of traditional rehabilitation and independent living service models in 

five categories (Limitations, Label/Role, Objectives, Organizational Structure and 

Response, Community and Self-Perceptions of Person with a Disability) shows this 

difference in philosophy. The rehabilitation model views limitations as physical 

impairments resulting in functional limitations related to walking, seeing, hearing, 

learning, etc. The independent living service model, on the other hand, views 

limitations as the community barriers, including stereotypes, stigma, prejudice, 

discrimination, low expectations, and structural barriers, that people with disabilities 

must navigate in order to have an active life of their choosing. In the area of labels 

49

degrees. 

Professional counseling 

Professional therapy 

COMMUNITY AND 

SELF-PERCEPTIONS 

OF PERSON WITH A 

DISABILITY 

A person who, as a result of a 

disability, is unable to 

participate in a variety of 

roles due to lack of function. 

A person identified as 

having a disability, who, as 

a result of community 

perceptions and structural 

barriers, is restricted from 

participating in a variety of 

social roles, including roles 

related to education, 

employment, recreation, 

social, worship, civic 

activities, etc. 

TRADITIONAL REHABILITATION AND INDEPENDENT LIVING PARADIGM COMPARISON 

(COMPARISON OF SERVICE MODELS) 

ISSUE REHABILITATION INDEPENDENT LIVING 

LIMITATIONS Impairments resulting in 

functional limitations related to 

walking, seeing, hearing, 

learning, etc. 

Community barriers, including 

stereotypes, stigma, prejudice, 

discrimination, expectations 

and structural barriers. 

LABEL/ROLE Patient, victim, sufferer Person with a disability, 

advocate, consumer 

OBJECTIVES Fix deficits to overcome 

limitations. 

Systems change to reduce 

structured inequality, 

disability awareness to 

minimize restrictive 

perceptions 

ORGANIZATIONAL 

STRUCTURE AND 

RESPONSE 

Control is vested in 

professionals 

Knowledge base is advanced 

Control is vested in person(s) 

with disabilities. 

Knowledge base is 

experiential, focusing on 

achieving independence. 

Peer support and 

counseling 

Independent living skills 

training 

 (Impact, Inc.) 

50

and roles, it is not uncommon for the rehabilitation model to consider an individual 

with disabilities as a patient, victim, or sufferer. The independent living philosophy 

would describe the same individual as a “person with a disability,” an “advocate,” or 

a “consumer.” The objective of the rehabilitation philosophy is to fix deficits and to 

overcome limitations. Independent living service models seek systems change to 

reduce structured inequality and disability awareness to minimize restrictive 

perceptions. In the area of organizational structure and response, the rehabilitation 

model vests control in professionals. The knowledge base is advanced degrees, 

professional counseling, or professional therapy. The independent living service 

model seeks to vest control in the person(s) with disabilities. The knowledge base is 

experiential, focusing on achieving independence. Peer support and counseling are 

recommended. Independent living skills training is provided. Finally, there are 

differences in the community and self-perceptions of a person with a disability. The 

rehabilitation model would identify a person who, as a result of a disability, is unable 

to participate in a variety of roles due to lack of function. The independent living 

model would see a person identified as having a disability as someone who, as a 

result of community perceptions and structural barriers, is restricted from 

participating in a variety of social roles, including roles that relate to education, 

employment, recreation, social, worship, and civic activities. 

By valuing diverse perspectives and approaches to living in and contributing to one’s 

community, the independent living concept offers tribes the opportunity to develop 

services and programs for tribal members with disabilities that are tailored to their own 

unique cultures. This philosophy invites tribal members and communities to tap into and 

express their deeply held values and beliefs. For some this may mean taking a wellness 

approach; for others, seeking balance; for still others, deepening their understanding of 

traditional healing or of their own tribe’s teachings. For tribes, designing a program to 

assist tribal members with disabilities can be part of a larger healing journey. 

Model Approaches 

In the United States, independent living organizations with an emphasis on Native 

Americans are a relatively new concept. However, three organizations have pioneered 

in this area, providing independent living services specifically to Native Americans. 

51

Each of the three programs that follow exemplifies unique approaches to providing 

independent living programs and services to Native Americans, as well as additional 

services designed to meet the needs of the Indian communities they serve: 

ASSIST! to Independence 

PO Box 4133 

Tuba City, AZ 86045 

Phone: (928) 283-6261; (888) 848-1449 

Voice/TTY: (928) 283-6672 

Fax: (928) 283-6284 

E-mail: assist@cybertrails.com 

Web site: www.assisttoindependence.org 

The mission of ASSIST! to Independence is to provide culturally relevant services to 

a cross-disability American Indian consumer population. Each of its programs 

emphasizes a common goal of enhancing quality of life and community life through 

maximizing independence and improving functional skills. These services are 

provided in an environment that promotes active consumer and family participation 

in self-determination and equal opportunities. ASSIST! to Independence is a 

community-based, American Indian–owned and –operated nonprofit agency that was 

established by and for people with disabilities and chronic health conditions to help 

fill some of the gaps in service delivery (ASSIST!, 2002a). 

ASSIST! provides services primarily to the Navajo, Hopi, and Southern Paiute 

Reservations; however, anyone needing information or assistance in the northern part 

of the state is welcome to request services. The agency serves as a consumer-driven 

community action program to facilitate general awareness of disability-related issues, 

community access, education, information sharing, assistive technology access, 

advocacy, and independent living that is culturally appropriate for American Indians. 

This is done through a comprehensive collaborative network, which provides support 

and resources that promote the active participation of each individual in his/her selfcare management. Program staff provide the tools necessary for individuals to make 

informed choices and decisions; to maintain a maximum level of independent living; to 

achieve equality of opportunity, inclusion, and integration in the community and 

society; and to attain economic and social self-sufficiency (ASSIST!, 2002a). 

52

ASSIST! serves as the umbrella organization for five major programs: (1) The Regional 

Resource Center for Assistive Technology; (2) The Center for Independent Living; (3) 

The Special Needs Toy Lending Library; (4) The Functional Assessment Clinic; and (5) 

The Sensory Integration Program. ASSIST! provides the four core independent living 

services of (1) information and referral; (2) independent living skills training; (3) 

individual and systems advocacy; and (4) peer mentoring. In addition to these four core 

services, ASSIST! also provides traditional healing, home modifications and 

environmental interventions, durable medical equipment, and nonemergency 

transportation to medical appointments for individuals who qualify (ASSIST!, 2002a). 

ASSIST! attributes its success to the following: 

•	 ASSIST! services are dynamic and fluid in nature, so they are able to respond 

fairly quickly to current needs within the community. 

•	 ASSIST! believes in understanding and immersion in the culture they are 

serving, and respecting differing cultural needs. 

•	 ASSIST! uses aggressive outreach promoting “wellness” services, as opposed 

to services targeted primarily for people with disabilities. 

•	 ASSIST! uses extensive and comprehensive collaborations and networking 

within the community. 

•	 ASSIST! develops close working relationships with “nontraditional disability 

specialists,” such as community health representatives, senior centers, and 

public health nurses. 

•	 ASSIST! has a visible presence within the community. They attend many senior 

functions and all health fairs promoted by Chapter Houses within communities 

across the reservation (ASSIST!, 2002b). 

Native American Independent Living Services (NAILS) 

3108 Main Street


Buffalo, NY 14214


Voice/TDD: (716) 836-0822


Fax: (716) 835-3967


E-mail: info@wnyilp.org


Web site: www.wnyilp.org


53

NAILS is a program of the Western New York Independent Living Project in Buffalo, 

New York. NAILS serves the Six Nations Confederation in the Western New York 

region. This federally recognized program has successfully assisted hundreds of 

American Indians with disabilities with independent living services. Services and 

programs are provided to American Indians with disabilities living on three 

reservations and in area cities and communities. NAILS provides its services to 

members of the Onondaga, Oneida, Cayuga, Mohawk, Seneca, and Tuscarora Tribes 

(Native American Independent Living Services, 2002a). 

All requests for services, communication, and information relating to services 

received are kept strictly confidential. NAILS provides advocacy, peer support, 

information and referral, independent living skills instruction, mental health support 

groups, family support services, service coordination/case management, and a 

family reimbursement program. NAILS is considered a walls-free program delivering 

its services through a mobile office service system. Services are delivered to 

consumers in their homes rather than the consumers going to an independent living 

center (ILC) (Native American Independent Living Services, 2002b). 

NAILS attributes its success to the following: 

•	 NAILS hires staff from each of the nations it serves to work in those nations, 

thus maintaining and developing trust between NAILS staff and the tribes and 

consumers whom they serve. 

•	 NAILS has worked to develop staff cultural competency, helping them to 

understand the unique cultures of the nations they serve as well as to 

understand the unique government-to-government relationships each tribe has 

with state governments and with the Federal Government, which vary. 

(Dougherty, 2002) 

Native American Advocacy Project (NAAP) 

PO Box 527


208 South Main Street


Winner, SD 57580


Phone: (605) 842-3977; (800) 303-3975


TTY: (605) 842-3977


54

Fax: (605) 842-3983 

E-mail: admin@sdnaap.org 

Web site: www.sdnaap.org 

The mission of the Native American Advocacy Project is to empower members of the 

American Indian Oyate in South Dakota who have developmental, physical, mental, 

and/or neurobiological disabilities to actualize their potential by providing them with 

education, training, advocacy, support, independent living skills, and referrals to 

them and their Tiospaye (Native American Advocacy Project, 2002). 

NAAP is a statewide, nonprofit, consumer and family membership organization for 

persons residing on and off lands of the nine tribal nations in South Dakota. NAAP is 

chartered both with the State of South Dakota and the Rosebud Sioux Tribe (where 

NAAP’s central office is located). NAAP is committed to providing support to the 

developing role of Native American consumers (persons with all types of disabilities) 

and their family members in system planning, decisionmaking, networking, advocacy, 

and service development for these populations. NAAP is also committed to being a 

cross-disability organization; they are inclusive of persons with all types of 

disabilities, not limiting efforts to only one or two disability groups but strengthening 

efforts on behalf of all persons with disabilities. This approach provides support to 

those disabilities that have been under- or unrepresented in the disability movement 

(Native American Advocacy Project, 2002a). 

NAAP operates the Tateya Topa Ho (Voice of the Four Winds) program, which is an 

intertribal ILC “without walls” that provides services to individuals with disabilities 

living on reservations and tribal land and in unserved areas throughout South 

Dakota. Services are provided on a local basis so that individuals are able to 

become independent in their own environment, rather than having to leave their 

homes, families, and communities. Independent living services and support systems 

are provided by Native individuals with disabilities or local/tribal service providers. 

The four core independent living services to consumers with disabilities are 

information and referral, advocacy, peer support, and independent living skills 

training. Independent living skills training includes such things as food preparation 

55

and shopping, homemaking skills, budget management, leisure activities/recreation, 

interpersonal skills, and communication skills (Native American Advocacy Project, 

2002b). 

Resources 

Independent living technical assistance organizations provide valuable assistance to 

Native American tribes, Indians with disabilities, and program and service providers. 

The American Indian Disability Technical Assistance Center (AIDTAC), for example, 

helps tribes create holistic plans to fill gaps in their infrastructure; modify or create 

laws and policies that reduce independent living barriers; review, modify, or create 

laws and policies that facilitate employment opportunities for members with 

disabilities; coordinate disability issues on reservations; expand, improve, or create 

services by identifying potential links; and facilitate cooperative agreements with 

nontribal organizations. In addition, AIDTAC assists nontribal agencies in working with 

tribes in such a way that culture and sovereignty are respected; provides a national 

network of tribal programs, nontribal organizations, and consumers who advocate for 

issues related to Indians with disabilities at the tribal, state, regional, and national 

levels; and identifies, recruits, and mentors American Indians and Alaska Natives 

with disabilities who are in leadership positions. These organizations usually have 

organizational and funding ties to institutions of higher learning. 

Federal Funding for Independent Living Centers 

Independent living services and centers are funded through Title VII of the 

Rehabilitation Act. Title VII provides funds that states may use to provide 

independent living services, develop and maintain state ILCs, and improve working 

relations between independent living programs, ILCs, state independent living 

councils, vocational rehabilitation, supported employment, and other federal and 

nonfederal programs established or supported through the Rehabilitation Act. Funds 

to provide independent living services are available through a grant mechanism. 

Tribal governments may apply to receive a Title VII grant. Grants are administered 

through the Rehabilitation Services Administration (NCD, 2002). 

56

Statewide Independent Living Councils 

In the independent living process, statewide independent living councils (SILCs) are full 

partners with vocational rehabilitation through the 1992 amendments to the Rehabili– 

tation Act. Their primary responsibility is collaboration with state vocational rehabilitation 

agencies in the development of a state independent living plan, determining how 

Rehabilitation Act (Part B) funds are used, monitoring the plan, reviewing the plan, and 

evaluating the implementation of the plan (Independent Living, 2002). 

State governors appoint members to each SILC after soliciting recommendations from 

organizations that represent a broad range of individuals with disabilities. Those 

appointed are knowledgeable and committed to disability rights and the independent 

living philosophy. Tribal representation is authorized under the Rehabilitation Act. In 

states where Section 121 (tribal vocational rehabilitation grant) projects have been 

awarded, one member of the council is required to be a director of one of those projects 

(29 U.S.C. § 796D(b)(2)(C)). The 1992 amendments to the Rehabilitation Act seek 

consumer control by requiring that the majority of an SILC’s membership be individuals 

with disabilities not employed by ILCs or state agencies (Independent Living, 2002). 

Local Independent Living Centers 

The Rehabilitation Act of 1978 created a system of ILCs to serve individuals with severe 

disabilities. Independent living centers, or centers for independent living (CILs), are 

nonprofit organizations that are typically nonresidential, consumer-controlled, and 

community-based. They provide services and advocacy by and for people with 

disabilities. The goal of these organizations is to help people with disabilities to reach 

their maximum potential in their families and communities. In addition, these 

organizations serve as an advocate for national, state, and local independent living 

issues. The 1992 amendments to the Rehabilitation Act require that these organizations 

have a majority of individuals with disabilities on their staff and governing boards. 

ILCs/CILs seek to provide services to individuals with disabilities from cross-disability 

and multicultural populations. The core services that ILCs/CILs provide are 

• Systems and individual advocacy 

57

• Peer counseling 

• Information and referral 

• Independent living skills training 

These organizations may also provide assistance in finding and obtaining accessible 

housing, financial benefits counseling, equipment loan and/or repair, personal 

assistance services, employment readiness services, and services that relate to 

identifying, hiring, training, and firing a personal assistant (Research and Training 

Center on Independent Living, 2002). 

Native American consumers and providers would benefit by contacting the ILC/CIL 

nearest to their reservation. Although most ILCs/CILs do not have a specific Indian 

focus, they provide services to individuals with disabilities from cross-disability and 

multicultural populations. 

Independent Living Advocacy 

The idea of independent living has ties to the civil rights movements of the 1960s 

and 1970s. Activities included forming community-based groups of people with 

disabilities working together to identify barriers and gaps in the delivery of services. 

To address these service delivery barriers, action plans were developed that focused 

on educating the community and influencing policymakers at all levels in order to 

introduce legislation to remove these barriers and to change policies and regulations 

(Mountain State Center for Independent Living, 2002). 

The Independent Living Movement works for anti-discrimination legislation and equal 

opportunity for services, allowing people with disabilities the same degree of control 

over their lives as people without disabilities, and has people with disabilities take 

the initiative in the design of services, which maximizes individual consumer choice 

and control. In addition, the Independent Living Movement believes that people with 

disabilities must demonstrate, to themselves and to the public, that they are fully 

capable of taking the independent living cause in their own hands as the movement 

is based on the principles of self-determination, self-help, and consumer control 

(disAbility Resource Center, 2002). 

58

Advocacy provides a mechanism by which consumers and professionals can 

influence policy and program decisions affecting individuals with disabilities. Selfadvocacy places value on individuals taking control of their lives and acting in their 

own best interest. Self-advocacy requires an individual to be linked to information, 

understand complex rules, repeatedly communicate one’s needs to an impersonal 

bureaucracy in an effective manner, and be persistent. Systems advocacy, in 

particular, seeks to improve policy responsiveness, increase resource sharing, and 

facilitate program access (Clay, 2002). 

Systems advocacy may also present itself as an obstacle for individual Indians with 

disabilities because of the complex relationships between tribal governments, state 

governments, and the Federal Government that make targeted advocacy efforts 

difficult. However, systems advocacy has been critical to tribal governments in their 

goal to exercise self-determination and in the passage of the Self-Determination Act 

of 1976. Thus, through national organizations and an ILC structure on a reservation, 

59

References 

ASSIST! to Independence. (2002a). ASSIST to independence. Retrieved September 

26, 2002, from www.assisttoindependence.org/ati. 

ASSIST! to Independence. (2002). Round peg in a square hole: Independent living in 

Indian country. Retrieved September 26, 2002, from www.assisttoindependence. 

org/ati/peg.html. 

ASSIST! to Independence. (2002b). Competition regarding best CIL practices in rural 

outreach to emerging disability populations. Retrieved September 26, 2002, from 

www.assisttoindependence.org/ati/bestpractices.html. 

Clay, Julie Anna. (2002). Native American independent living. Retrieved October 7, 

2002, from www.aidtac.org/NativeIL.htm. 

disAbility Resource Center. (2002). Independent living. Retrieved September 19, 

2002, from www.wa_ilsc.org/independ.html. 

Dougherty, Ken. (September 24, 2002). Telephone interview by Victor Paternoster. 

Impact, Inc. (2002). IL & rehabilitation paradigm comparison. Retrieved September 

19, 2002, from www.impactcil.org/phil_history/il_rehab.htm. 

Independent Living Research Utilization (ILRU). (2002). Directory of SILCs. Retrieved 

September 20, 2002, from www.ilru.org/jump1.htm. 

Langwell, Kathy, and Janet Sutton. (2002). People with disabilities on tribal lands: 

Education, health, rehabilitation, and independent living literature review. 

Washington, DC: National Council on Disability. 

Mountain State Center for Independent Living. (2002). History of the independent 

living movement. Retrieved September 19, 2002, from www.mtstcil.org/skills/il-2­

intro.html. 

Native American Advocacy Project. (2002a). Homepage. Retrieved September 26, 

2002, from www.sdnaap.org. 

Native American Advocacy Project. (2002b). Tateya Topa Ho. Retrieved September 

26, 2002, from www.sdnaap.org/tateya.htm. 

Native American Independent Living Services (NAILS). (2002a). NAILS. Retrieved 

September 26, 2002, from www.wnyilp.org/NAILS/NAILS.html. 

60

Native American Independent Living Services (NAILS). (2002b). Services. Retrieved 

September 26, 2002, from www.wnyilp.org/NAILS/services.html. 

Research and Training Center on Independent Living. (2002). Independent Living 

Concept Fact Sheet. 

Virtual CIL. (2002). Directory of independent living centers. Retrieved October 8, 

2002, from www.virtualcil.net/cils. 

61

 Vocational 

Rehabilitation & 

Employment

Resources 
Joseph Garci

People have ideas about 

disabilities but they don’t know wh

it’s like. They might want to hold y

back. I still have all the mechanica

knowledge from running heavy 

equipment but just because I can

do that anymore, I can still do thin

like change the transmission on m

car by myself. 

VOCATIONAL 

REHABILITATION 
Vocational Rehabilitation€

and Employment Resources€

Background 

Vocational rehabilitation (VR) programs vary greatly from state to state and tribe to 

tribe. Tribal VR programs may differ significantly depending on a tribe’s cultural and 

geographical environment. Vocational rehabilitation is more than job placement or 

counseling services. It is a comprehensive service uniquely tailored to the local 

culture and community needs. The George Washington University’s Department of 

Counseling, Human and Organizational Studies (2002, p. 1) suggests that 

rehabilitation counselors “...are concerned with assisting individuals who have 

disabilities with maximizing their potential and their independence.” This assistance 

entails comprehensive counseling services, which include the individual, group, and 

family, in addition to multicultural counseling and addressing the attitudinal and 

environmental barriers for people with disabilities. Rehabilitation counseling may 

also encompass more complex services and counseling approaches such as 

medical and psychosocial aspects of disability and job development and placement, 

which are all regulated by strict ethical standards for rehabilitation counselors 

(Department of Counseling, Human and Organizational Studies, 2002). 

Unfortunately, not all tribes have a VR program. The U.S. Department of Education, 

through the Rehabilitation Act of 1973, funds tribal VR programs on a competitive 

basis. The average award of this Section 121 grant program is $350,000. Because 

grants are awarded on a competitive basis, tribes who may have had VR services in 

the past could lose their VR funding during the next funding cycle, and those tribes 

who have never had VR funding could be awarded a grant for the first time. This 

situation presents a number of problems for tribes who are attempting to provide a 

much-needed service to their tribal members and descendants with disabilities. 

63

In light of these unpredictable changes, this section of the Toolkit will (1) familiarize 

the consumer with VR services and employment resources and (2) provide ideas and 

resources to existing tribal VR programs and/or to those tribes who are planning to 

develop their own VR program. 

VR Service and Employment Basics for the Consumer 

The Rehabilitation Services Administration (RSA) was established by Congress to 

protect the employment and rehabilitation rights of people with disabilities. The RSA 

provides national leadership for, and administration of, basic state and formula grant 

programs, service projects, and rehabilitation training discretionary grant programs. 

These programs develop and implement comprehensive and coordinated programs of 

vocational rehabilitation, supported employment, and independent living for 

individuals with disabilities through services, training, and economic opportunities in 

order to maximize their employability, independence, and integration into the work 

place and the community (U.S. ED, 2002). 

Under Title I of the Rehabilitation Act of 1973, as amended, states receive federal 

grants (through the Department of Education) to operate a comprehensive VR 

program. These funds are awarded to designated state VR agencies within each 

state. This state-operated program is designed to assess, plan, develop, and provide 

VR services to eligible individuals with disabilities, consistent with their strengths, 

resources, priorities, concerns, abilities, capabilities, interests, and informed choice. 

RSA’s major Title I formula grant program provides funds to state VR agencies to 

provide employment-related services for individuals with disabilities, giving priority to 

individuals who are significantly disabled (U.S. ED, 2002). 

Qualifying for Vocational Rehabilitation Services 

An “individual with a disability” means any individual who 

•	 has a physical or mental impairment that constitutes or results in a substantial 

impediment to employment for the individual; and 

• can benefit from VR services to achieve an employment outcome. 

64

To be eligible for VR services, an individual must 

• be an “individual with a disability,” as defined above; and 

• require VR services to prepare for, secure, retain or regain employment. 

(Minnesota Workforce Center, 2002) 

RSA is unique in that it specifically addresses drug or alcohol addiction (Section 504 

covers former users and those in recovery programs and not currently using drugs or 

alcohol), in addition to emotional and psychological problems, as a disability. This 

recognition is important when assessing and serving the needs of AI/AN communities. 

Ticket to Work 

On the employment front, a portion of President Bush’s New Freedom Initiative 

announced on February 1, 2001, included swift implementation of the Ticket to Work 

Incentives Improvement Act of 1999. The goal of the program is “to give disability 

beneficiaries the opportunity to achieve steady, long-term employment by providing 

them greater choices and opportunities to go to work if they choose to do so” (Social 

Security Administration [SSA], 2002). The legislation also “removes barriers that 

previously influenced people’s choices between healthcare coverage and work” 

(SSA, 2002). By 2003, all states and territories will have this program implemented. 

Ticket to Work 

Phone: (866) YOURTICKET; (866) 968-7842 

TDD: (866) TDD2WORK; (866) 833-2967 

Web site: www.yourtickettowork.com 

Employment Protections 

Titles I and II of ADA also specifically address employment issues for individuals with 

disabilities. However, Title I categorically excludes tribes as employers (42 U.S.C. § 

12111(5)(B)(i)). This exclusion applies to the sovereign status of tribes. Other 

businesses on the reservation do not necessarily fall under this categorical exclusion. 

Title I requires employers with 15 or more employees to provide qualified individuals 

with disabilities with an equal opportunity to benefit from the full range of employment65

related opportunities available to others. For example, it prohibits discrimination in 

recruitment, hiring, promotions, training, pay, social activities, and other privileges of 

employment. It restricts questions that can be asked about an applicant’s disability 

before a job offer is made, and it requires that employers make reasonable 

accommodation for the known physical or mental disability of otherwise qualified 

individuals with disabilities, unless it results in undue hardship. Title II covers all 

activities of state and local governments regardless of the government entity’s size or 

receipt of federal funding. Title II requires that state and local governments give people 

with disabilities an equal opportunity to benefit from all of their programs, services, 

and activities (e.g., public education, employment, transportation, recreation, health 

care, social services, courts, voting, and town meetings). 

State and local governments are also required to follow specific architectural 

standards in the new construction and alteration of their buildings. They also must 

relocate programs or otherwise provide access in inaccessible older buildings and 

communicate effectively with people who have hearing, vision, or speech disabilities. 

Public entities are not required to take actions that would result in undue financial 

and administrative burdens. They are required to make reasonable modifications to 

policies, practices, and procedures where necessary to avoid discrimination, unless 

they can demonstrate that doing so would fundamentally alter the nature of the 

service, program, or activity being provided. 

How to File Complaints 

The Rehabilitation Act prohibits discrimination based on disability in programs 

conducted by federal agencies, including programs receiving federal funds and in 

federal employment. In determining employment discrimination, the Rehabilitation 

Act uses the same standards as Title I of ADA. 

Section 121 of the Rehabilitation Act authorizes the RSA to make grants to tribes for 

the purpose of vocational rehabilitation services. Tribes accepting these grants, and 

generally other federal funds, agree to comply with federal law. However, this 

agreement may not amount to a waiver of sovereign immunity. Sovereign immunity 

would prevent private parties from seeking redress in federal or state court. However, 

66

sovereign immunity may not protect tribes from the Federal Government enforcing


disability legislation. For nontribal businesses and services, federal law still applies.


Charges of employment discrimination on the basis of disability may be filed at any


U.S. Equal Employment Opportunity Commission (EEOC) field office. Field offices are


located in 50 cities throughout the United States and are listed in most telephone


directories under “U.S. Government.” For the appropriate EEOC field office in your


geographic area, contact


Phone: (800) 669-4000


TTY/TDD: (800) 669-6820


Web site: www.eeoc.gov


Publications and information on EEOC-enforced laws may be obtained by calling


Phone: (800) 669-3362


TTY/TDD: (800) 800-3302


Information on how to accommodate a specific individual with a disability is available


through the Job Accommodation Network.


Complaints of Title II violations may be filed with DOJ within 180 days of the date of


discrimination. In certain situations, cases may be referred to a mediation program


sponsored by the Department. The Department may bring a lawsuit when it has


investigated a matter and has been unable to resolve violations. For more


information, contact


Disability Rights Section; Civil Rights Division; U.S. Department of Justice


PO Box 66738


Washington, DC 20035-6738


Phone: (800) 514-0301


TTY: (800) 514-0383


Web site: www.usdoj.gov/crt/ada/adahom1.htm


The NCD, in collaboration with the National Urban League, has prepared “A Guide to


Disability Rights Laws,” which provides a summary of federal civil rights laws that


67

ensure equal opportunity for people with disabilities. The guide is available on 

NCD’s Web site at www.ncd.gov/newsroom/publications/disabilityrights.html. 

Consumer Disability Resources 

“During the period of October 1994 to January 1995, about one in three American 

Indians and Alaskan Natives aged 15 and over reported having a disability, and one 

in seven reported having a ‘severe’ disability” (CBAIP, 2002). These statistics raise 

serious concerns, considering a tribe’s ability to provide adequate resources and 

services for tribal members and descendants with disabilities. High unemployment 

rates on reservations, which range from 33.5 percent to 52 percent, make it 

challenging for American Indians with disabilities to find employment (CBAIP, 2002). 

According to a review of VR research related to American Indians, “...over half (54 

percent) of the studies cited indicated that American Indians are an under served 

population due to cultural and socioeconomic barriers, which include geographic 

isolation, poverty, lack of transportation, language differences, and value 

differences” (CBAIP, 2002). Almost half the studies “cited the need to increase VR 

services to American Indians with disabling conditions” The unique cultural and 

geographical characteristics of many tribes present challenges when attempting to 

serve its members. “A survey of State VR administrators revealed that rehabilitation 

barriers experienced by reservation-based American Indians with disabilities include 

(a) cultural differences, (b) geographic isolation, and (c) lack of employment 

opportunities” (CBAIP, 2002). 

In 1994, the American Indian Disability Legislation Project conducted a survey of 

143 AI and AN tribes to obtain information on the accessibility of public buildings, 

availability of rehabilitation services, and tribal awareness of disability laws. 

Surveyed tribes were also asked to report on the frequency of disabling conditions. 

Among the conditions most frequently cited among tribes in the continental United 

States were diabetes (29 percent), emotional disabilities (22 percent), and learning 

disabilities (11 percent). Among tribes in Alaska, emotional disabilities (31.3 

percent), learning disabilities (17 percent), and deafness or hardness of hearing (17 

percent) were the most frequently reported disabling conditions (American Indian 

Disability Legislation Project, 2000). 

68

American Indian Rehabilitation Research and Training Center (AIRRTC) analyses 

found that alcohol abuse or dependence was the most common cause of 

disability among AI/ANs represented in the 1997 RSA database. Approximately 

11 percent of AI/AN clients had a major diagnosis of alcohol abuse compared 

with only 4 percent of White, nearly 6 percent of Black, and less than 2 percent 

of Asian clients. Although the prevalence did not vary substantially by race, 

learning disabilities were found to be the second most frequent major diagnosis 

(9 percent) among AI/AN clients represented in the RSA database (Schacht, 

Gahungu, White, LaPlante, and Menz, 2000). 

Mental health problems, along with alcohol and substance abuse, present some of 

the greatest challenges to Indian communities. The following subsections provide 

general directions in seeking services for some of the more prevalent forms of 

disabilities in Indian country. Unfortunately, it was not possible to list all of the 

services made available for those seeking assistance with mental health and 

alcohol and substance abuse treatment. 

Mental Health 

According to a report of the U.S. Department of Health and Human Services 

Substance Abuse and Mental Health Services Administration (SAMHSA), Native 

Americans are more likely to experience mental disorders than other racial and 

ethnic groups in the United States. “Of great concern is the high prevalence of 

depression, anxiety, substance abuse, violence, and suicide. Other common mental 

health problems of Native American individuals are psychosomatic symptoms and 

emotional problems resulting from disturbed interpersonal and family 

relationships”(SAMHSA, p. 11). According to SAMHSA, failure to address the “historic 

trauma” and culture of Native Americans in health care and other areas “will only 

add to the oppression experienced by Native Americans for decades”(ibid, pp. 11-

12). Nonetheless, disentangling socioeconomic factors, cultural influences, civil 

rights issues, and the effect of race/ethnicity is difficult for any health condition, 

particularly mental health disorders. 

—Vernellia Randall (2001) 

The devastating effects of historic trauma on Indian communities have left a large 

population of Indian people with what seems like overwhelming obstacles to face in 

an attempt to improve their quality of life. Depression and anxiety, along with 

69

psychosomatic illnesses, can create huge barriers 

to employment. The RSA specifically addresses 

this critical aspect of employability. 

Where Can I Get Help? Some tribes support their 

own mental health services. These services may 

reflect the unique cultural background of the local 

Many tribal mental health 

programs are beginning to 

understand the need and 

effectiveness of utilizing 

culturally appropriate 

approaches toward healing. 

tribal community. Many tribal mental health programs are beginning to understand 

the need for and effectiveness of utilizing culturally appropriate approaches toward 

healing. If your tribe does not support a mental health program, it would be advisable 

to contact your local county mental health service. Depending on your need and 

financial status, mental health services can be provided for free or on a sliding-fee 

scale that will fit your financial status. 

Alcohol and Substance Abuse 

In 1999, there were about 43,000 American Indian and Alaska Native admissions 

to publicly funded substance abuse treatment facilities. A higher proportion of 

American Indian/Alaska Native treatment admissions were female (35 percent) 

than among the total treatment population (30 percent). Among American Indians/ 

Alaska Natives, admissions for alcohol abuse declined by 11 percent between 

1994 and 1999, while admissions for illicit drugs increased by 78 percent. 

—Office of Applied Studies, Substance Abuse and 

Mental Health Services Administration (2002) 

As a result of over 500 years of cultural oppression and a brutal colonization process, 

nations of Indian people have been affected emotionally and spiritually. Each successive 

generation is embroiled in the battle with alcohol and substance abuse; these substances 

are often used to deal with the intergenerational pain associated with oppression. 

Section 706 of the Rehabilitation Act recognizes the disabling effects of alcohol and 

substance abuse in our society and thereby makes provisions for employment 

assistance (www.eeoc.gov/laws/rehab.html). 

Where Can I Get Help? Many tribes offer alcohol and substance abuse program 

services to some degree. Some tribes may have extensive services while others may 

70

have none. The first step is to 

check with your tribe to see if they 

offer any alcohol and substance 

abuse services. If your tribe 

provides vocational rehabilitation, 

this program would most likely 

have the information you will need. 

Intervention may include inpatient 

treatment or outpatient treatment 

depending on the severity of 

abuse. Many treatment centers 

are beginning to utilize culturally 

appropriate approaches toward 

healing. If your tribe does not 

provide chemical dependency 

counseling or referral services, 

you may contact your local county 

agencies. There are many forms of 

• In 1999, there were about 43,000 

American Indian and Alaska Native 

admissions to publicly funded substance abuse treatment facilities. 

• A higher proportion of American 

Indian/Alaska Native treatment 

admissions were female (35 percent) 

than among the total treatment 

population (30 percent). 

• Among American Indians/Alaska 

Natives, admissions for alcohol abuse 

declined by 11 percent between 1994 

and 1999, while admissions for illicit 

drugs increased by 78 percent. 

Office of Applied Studies, 

Substance Abuse and Mental Health 

Services Administration (SAMHSA) 

payment, and each is unique to the person’s circumstances. Indian Health Services 

may assist you in this respect. Most important, do not give up. The process can 

sometimes be quick while at other times frustrating. 

Spinal Cord Injury 

“Approximately 200,000 individuals in the United States have spinal cord injuries. Every 

year, approximately 10,000 people sustain new spinal cord injuries” (Paralyzed Veterans 

of America, 2002). Most of these people are injured in auto and sports accidents, falls, 

and industrial mishaps. An estimated 60 percent of these individuals are 30 years old or 

younger, and the majority of them are men. In Indian country it is much the same. 

By nature, a spinal cord injury (SCI) has a very sudden impact on an individual, 

physically as well as emotionally and socially. It is normal to have questions about 

how your life will be affected. Remember, though, that many other people have 

experienced SCIs and have continued to lead happy and productive lives. In order to 

71

do so, you must become an active participant in your recovery. The resources 

described in the following pages are just the tip of the iceberg. Many people and 

organizations are available to help (Paralyzed Veterans of America, 2002). 

For More Information Contact: 

National Rehabilitation Hospital 

102 Irving Street, NW 

Washington, DC 20010 

Phone: (202) 877-1000 

Web site: info@nrhrehab.org 

The National Rehabilitation Hospital specializes in treating persons with physical 

disabilities caused by spinal cord and head injuries, stroke, arthritis, amputation, multiple 

sclerosis, post-polio syndrome, and other neurological and orthopedic conditions. 

National Spinal Cord Injury Association 

6701 Democracy Boulevard


Suite 300-9


Bethesda, MD 20817


Phone: (301) 588-6959


Fax: (301) 588-9414


Web site: www.spinalcord.org


The National Spinal Cord Injury Association is the nation’s oldest and largest civilian


organization dedicated to helping the hundreds of thousands of Americans coping


with the results of spinal cord injury and disease.


Paralyzed Veterans of America 

801 18th Street NW


Washington, DC 20006-3517


Phone: (800) 424-8200


Web site: www.pva.org/index.htm


The Paralyzed Veterans of America, a congressionally chartered veterans service


organization founded in 1946, has developed a unique expertise on a wide variety of


issues involving the special needs of our members—veterans of the armed forces


who have experienced spinal cord injury or dysfunction.


72

Shepherd Spinal Cord Injury Center 

2020 Peachtree Road NW


Atlanta, GA 30309-1402


Phone: (404) 352-2020 (Main)


E-mail: Webmaster@shepherd.org


Atlanta-based catastrophic care hospital treats people with spinal cord injuries,


acquired brain injuries, multiple sclerosis, and other neuromuscular illnesses and


urological problems.


Spina Bifida Association of America (SBAA) 

4590 MacArthur Boulevard NW, Suite 250


Washington, DC 20007-4226


Phone: (800) 621-3141or (202) 944-3285


Fax: (202) 944-3295


E-mail: sbaa@sbaa.org


SBAA addresses the specific needs of infants, children, and adults with spina bifida,


their families, and professionals who serve them. As the national representative of


over 70 chapters, it provides information and referral services, publishes materials,


funds research, provides training, and conducts individual and systems advocacy.


Spinal Cord Injury Information Network 

E-mail: sciWeb@uab.edu 

This service, based at the University of Alabama’s Spinal Rehabilitation Center, 

provides information and resources for people with spinal cord injuries. 

Traumatic Brain Injury 

There are a variety of causes of traumatic brain injury (TBI) ranging from a sudden 

physical assault to shaken baby syndrome. It can affect individuals of all ages and 

the impact of the injury can range from mild concussion to coma or even death. 

Symptoms of a TBI are also varied. These may include headache, nausea, confusion 

or other cognitive problems, a change in personality, depression, irritability, and other 

emotional and behavioral problems. Some people may have seizures as a result of a 

TBI (NINDS, 2002). 

73

The resources and organizations that follow offer information and services to 

individuals and family members of individuals who have experienced a TBI. As in the 

previous case, more resources are available, but this is a starting point. 

For More Information Contact: 

Acoustic Neuroma Association 

600 Peachtree Parkway, Suite 108


Cumming, GA 30041


Phone: (770) 205-8211


Fax: (770) 205-0239


E-mail: anausa@aol.com


Web site: www.anausa.org


Brain Injury Association 

105 North Alfred Street


Alexandria, VA 22314


Phone: (703) 236-6000; (800) 444-6443


Fax: (703) 236-6001


E-mail: publicrelations@biausa.org


Web site: www.biausa.org


Brain Trauma Foundation 

523 East 72nd Street, 8th Floor


New York, NY 10021


Phone: (212) 772-0608


Fax: (212) 772-0357


E-mail: info@braintrauma.org


Web site: www.braintrauma.org


Family Caregiver Alliance 

690 Market Street, Suite 600


San Francisco, CA 94104


Phone: (415) 434-3388; (800) 445-8106


Fax: (415) 434-3508


E-mail: info@caregiver.org


Web site: www.caregiver.org


74

National Rehabilitation Information Center (NARIC) 

4200 Forbes Boulevard, Suite 202


Lanham, MD 20706-4829


Phone: (301) 562-2400; (800) 346-2742


Fax: (301) 562-2401


Web site: www.naric.com


National Stroke Association 

9707 East Easter Lane


Englewood, CO 80112-3747


Phone: (303) 649-9299; (800) STROKES (787-6537)


Fax: (303) 649-1328


Web site: www.stroke.org


National Institute on Disability and Rehabilitation Research (NIDRR) 

600 Independence Avenue SW


Washington, DC 20013-1492


Phone: (202) 205-8134


Web site: www.ed.gov/offices/OSERS/NIDRR


Tribal VR Program Resources 

The organizations that follow offer resources, training, and technical assistance for 

individuals, tribes, and organizations planning to develop, support, and sustain VR 

programs. 

Office of Special Education and Rehabilitative Services (Region X) 

Department of Education


Rehabilitation Services Administration


915 2nd Avenue, Room 2848


Seattle, WA 98174


Phone: (206) 220-7847


Fax: (206) 220-7842


Web site: www.ed.gov


75

The Department of Education, Special Education, and Rehabilitation Services provides 

mentoring and oversight to programs funded in Region X as well as to tribal programs 

on a national basis. Regional responsibilities include VR agencies in the states of 

Oregon, Washington, Idaho, and Alaska. In addition, staff provides oversight, 

mentoring, and technical assistance to tribal VR programs across the country (there 

are only 69 VR programs yet more than 560 federally recognized tribes). American 

Indian rehabilitation programs function comparably to the state VR agencies except 

their services are provided to members of tribes who have disabilities and live on or 

near a reservation. The Region X Rehabilitation Services program has a rehabilitation 

services specialist with life experiences that provide intimate knowledge of tribal 

communities and tribal governments as well as federal and tribal barriers, which is 

particularly helpful for American Indian people in need of services. 

American Indian Rehabilitation Research and Training Center 

Institute for Human Development


Northern Arizona University


PO Box 5630


Flagstaff, AZ 86011-5630


Phone: (928) 523-4791


Fax: (928) 523-9127


TDD: (928) 523-1695


Web site: www.nau.edu/ihd/airrtc


The mission of AIRRTC is to improve the quality of life for American Indians and


Alaska Natives with disabilities through the conduct of research and training that will


result in culturally appropriate and responsive rehabilitation services; to improve


employment outcomes and facilitate access to services for American Indians and


Alaska Natives with disabilities; and to increase the participation of American


Indians and Alaska Natives in the design and delivery of rehabilitation services for


employment outcomes.


Certain basic principles represent the philosophy of AIRRTC and the guidelines by


which AIRRTC will operate over the next five years. These principles are the result of


AIRRTC’s long-term involvement with American Indian rehabilitation and are consistent


with the policies of RSA and the National Institute on Disability and Rehabilitation


Research (NIDRR) and legislation such as the Rehabilitation Act, as amended.


76

Consortium of Administrators for Native American Rehabilitation 

AIRRTC/CANAR Training and Technical Assistance Activities


Institute for Human Development


Northern Arizona University


PO Box 5630


Flagstaff, AZ 86011-5630


Phone: (928) 523-4791


Fax: (928) 523-9127


TDD: (928) 523-1695


Web site: www.nau.edu/ihd/airrtc


After the passage of the Rehabilitation Act Amendment of 1992, considerable


actions were taken to enhance cultural competence in rehabilitation service delivery,


increase outreach and services to persons with disabilities from diverse populations,


and develop recruitment strategies of persons from diverse backgrounds to work in


areas of rehabilitation. As a result of discussion and subsequent legislation, on


January 22, 1993, the Consortia of Administrators for Native American Rehabilitation


(CANAR) was established; it functions as a national platform for advocating the


needs for effective rehabilitation service delivery for American Indians and Alaska


Natives with disabilities who reside on or near federal or state reservations, Alaska


Native villages, rancheros, and pueblos. CANAR addresses the concerns, abilities,


capabilities, and informed choice of AI/AN consumers, so that they may prepare for


and engage in gainful employment, including self-employment, telecommuting, and


business ownership. CANAR continues to form collaborative working relationships


with AIRRTC, state rehabilitation agencies, Regional Rehabilitation Continuing


Education Programs (RRCEPs), tribal health and social service programs, capacity


building projects, and federal service agencies such as the U.S. Department of


Education and U.S. Department of Labor (Northern Arizona University, 2002).


Capacity Building for American Indians Project 

American Indian Rehabilitation Research and Training Center


Capacity Building for American Indians Project


Northern Arizona University


PO Box 5630


Flagstaff, AZ 86011-5630


77

Phone: (928) 523-4801


TTY: (928) 523-1695


Fax: (928) 523-9127


Web site: www.nau.edu/ihd/CBAIP


The AIRRTC Capacity Building for American Indians Project (CBAIP) is housed at the


Institute for Human Development on the campus of Northern Arizona University. The


mission of CBAIP is to enhance the capacity building and increase participation of


American Indians and Alaska Natives in competition for discretionary rehabilitation


grants, contracts, and cooperative agreements under Titles I through VIII of the


Rehabilitation Act of 1973, as amended.


Many American Indians and Alaska Natives who are eligible to compete for


discretionary rehabilitation grants, contracts, and cooperative agreements funded


under the Rehabilitation Act of 1973, as amended, are not aware of these funding


opportunities, or have limited knowledge regarding grant proposal development and


the VR system. By the very nature of CBAIP, funded under the Capacity Building for


Traditionally Underserved Populations Program, the target population of the Project


includes traditionally under-represented groups: American Indians, Alaska Natives,


minority entity representatives, and American Indians and Alaska Natives with


disabilities. CBAIP ensures equal access and treatment for eligible project participants


who are members of groups that have traditionally been under-represented.


National Rehabilitation Association 

633 South Washington Street


Alexandria, VA 22314


Phone: (703) 836-0850


Fax: (703) 836-0848


TDD: (703) 836-0849


E-mail: info@nationarehab.org


Not long after Congress passed the National Rehabilitation Act of 1920, the National


Rehabilitation Association (NRA) began its commitment to persons with disabilities.


The NRA is the oldest and strongest advocate for the rights of persons with


disabilities. Its mission is to provide advocacy, awareness, and career advancement


for professionals in the fields of rehabilitation. Members of the NRA include rehab


78

counselors; physical, speech, and occupational therapists; job trainers; consultants; 

independent living instructors; and other professionals involved in the advocacy of 

programs and services for people with disabilities. 

Seven core values provide the foundation for NRA services and programs: 

1. All people 

2. Professions in rehabilitation 

3. Visionary leadership 

4. Responsible resource management 

5. Advocacy 

6. Personal and professional enrichment 

7. Relationships built on trust and integrity 

In keeping with this commitment, the NRA has contributed and supported legislation 

such as the Rehabilitation Act of 1973 and subsequent reauthorizations, TJTC, the 

Job Training Partnership Act, and ADA. The association’s prominence and longevity 

are recognized by our nation’s leaders and give our members a vital role in shaping 

rehabilitation policy. 

National Association of Multicultural Rehabilitation Concerns 

633 South Washington Street


Alexandria, VA 22314


Phone: (703) 836-0850


Fax: (703) 836-0848


Web site: www.nationalrehab.org


The National Association of Multicultural Rehabilitation Concerns is a progressive


association of individuals whose goal is to effect positive change and create


opportunities for multicultural populations in the field of rehabilitation. Its philosophy


is action-oriented and incorporates the following goals:


•	 To provide professional seminars, workshops, and training that focus on 

cultural diversity in rehabilitation and enhanced service delivery to multicultural 

persons with disabilities. 

•	 To advocate, propose, and support legislation that addresses the needs of 

multicultural persons with disabilities and their communities. 

79

• To encourage and recruit people of color to enter the field of rehabilitation. 

•	 To provide current information on issues at the national, state, and local 

levels. 

•	 To educate the multicultural community on services available to persons with 

disabilities and their families. 

80

References 

American Indian Disability Legislation Project, Research and Training Center on Rural 

Rehabilitation. (January 2000). Montana University Rural Institute on Disabilities. 

Capacity Building for American Indians Project (CBAIP). (2002). Retrieved October 3, 

2002, from www.nau.edu/ihd/CBAIP/needfor.html. 

Center for Psychiatric Rehabilitation, Boston University. (1997). Retrieved December 

12, 2002, from www.bu.edu/cpr/reasaccom/whatis-psych.html. 

Clay, J. (1992). A profile of independent living services for American Indians with 

disabilities living on reservations. Missoula: University of Montana Rural Institute. 

Department of Counseling, Human and Organizational Studies, George Washington 

University. (2002). Introduction to the Field of Rehabilitation Counseling. (2002). 

Retrieved December 22, 2002, from www.gwu.edu/~chaos/rehab/Rc_def.htm. 

Minnesota Workforce Center. (2002). Vocational rehabilitation services. Retrieved 

December 30, 2002, from www.mnworkforcecenter.org/rehab/vr/definition.htm. 

National Institute of Neurological Disorders and Stroke (NINDS). (2002). Traumatic 

brain injury information page. Retrieved January 6, 2002, from 

www.ninds.nih.gov/index.htm. 

Northern Arizona University. (2002). Consortia of administrators for Native American 

rehabilitation. Retrieved October 3, 2002, from www.nau.edu/~ihd/CANAR/ 

history.html. 

Office of Applied Studies, Substance Abuse and Mental Health Services 

Administration (SAMHSA). (February 1, 2002). Dasis Report: American Indian and 

Alaska Natives in Substance Abuse Treatment: 1999. Washington, DC: SAMHSA. 

Office for Students with Disabilities. (1997). Portland Community College. Retrieved 

October 3, 2002, from http://spot.pcc.edu/osd/504.htm#protected 

Paralyzed Veterans of America. (2002). Retrieved December 16, 2002, from 

www.pva.org/NEWPVASITE/publications/onlinepubs.htm. 

Randall, Vernellia R. (2001). Profile of Indian/Eskimo Communities, Chapter 2: 

Background: Disparity, Discrimination and Diversity in Health Care; Volume I, The 

Role of Governmental and Private Health Care Programs and Initiatives, The Health 

Care Challenge: Acknowledging Disparity, Confronting Discrimination, and Ensuring 

81

Equality, Vol. I. (September 1999). Washington, DC: U.S. Commission on Civil 

Rights. Retrieved December 27, 2002 from http://academic.udayton.edu/health/ 

08civilrights/01-02-13ProfileNative.htm. 

Schacht, R., A. Gahungu, M. White, M. LaPlante, and F. Menz. (September 2000). An 

Analysis of Disability and Employment Outcome Data for American Indians and 

Alaska Natives. American Indian Rehabilitation Research and Training Center. 

Social Security Administration. (2002). Fact Sheet: Effect of the Ticket to Work 

Program on the Use of Alternative Participants to Provide Vocational Rehabilitation 

Services to People with Disabilities. Retrieved December 2002 from www.ssa.gov/ 

work/Service Providers/altpartprogfactsheet.html. 

U.S. Department of Education (U.S. ED) Rehabilitation Services Administration. 

(2002). About RSA. Retrieved October 3, 2002, from www.ed.gov/offices/OSERS/ 

RSA/About. 

U.S. Department of Justice, Civil Rights Division, Disability Rights Section. (August 

2001). A guide to disability rights laws. Retrieved September 27, 2002, from 

www.usdoj.gov/crt/ada/cguide.htm. 

U.S. Department of Labor On-line. (2002). JAN’s Web site portal for individuals. 

Retrieved October 3, 2002, from www.jan.wvu.edu 

82

Assistive Technolog
Danny Lucer

The unique challenges deaf 

native people have in Indian Countr

are the inadequate services to mee

their needs. Technology can give 

them the independence and selfesteem they need—whether it’s TT

and phone accommodation, pager

computers, or captioned media fo

education and entertainment. 
Assistive Technology 

Background 

Assistive technology is simple or complex technology enabling individuals with 

disabilities to live more independently, productively, and enjoyably. Assistive 

technology increases one’s ability to learn, work, compete, and interact with others 

(Washington Assistive Technology Alliance, 2002). 

Assistive technology products can improve and strengthen physical or mental 

functioning, help overcome a disability, assist in preventing the worsening of a 

condition, improve learning capacity, and act as a replacement for missing limbs. 

These products may include communication aids, computer access aids, daily living 

aids, education and learning aids, home and work environment aids, hearing and 

listening aids, mobility and transportation aids, seating and positioning aids, vision 

and reading aids, recreation and leisure aids, prosthetics, orthotics, and ergonomic 

equipment (Rehabtool.com, 2002). 

Assistive technology services help to support individuals with disabilities and their 

caregivers in selecting, acquiring, and/or using adaptive devices, which may include 

functional evaluations, device training, product demonstration, and the purchasing 

and leasing of equipment (Rehabtool.com, 2002). The Washington Assistive 

Technology Alliance provides the following definitions to help one understand the 

categories and types of assistive technology available for people with disabilities. 

Model Approaches 

In the United States, two Indian organizations are providing assistive technology 

devices and services specifically to Native Americans. Each of the programs that 

83

 Category Types of Assistive Technology 

Aids for Daily Living Self-help aids for use in activities such as eating, 

bathing, cooking, dressing, toileting, home 

maintenance, etc. 

Augmentative or Alternative Electronic and nonelectronic devices that 

Communication (AAC) provide a means for expressive and receptive 

communication for persons with limited or no 

speech. 

Aids for Deaf or Aids for specific populations including 

Hard of Hearing assistive listening devices (infrared, FM loop 

systems), hearing aids, TTYs, visual and tactile 

alerting systems, etc. 

Aids for Blind or Low Vision Aids for specific populations including magnifiers, 

Braille or speech output devices, large print 

screens, closed circuit television for magnifying 

documents, etc. 

Computer Access Input and output devices (voice, Braille), alternate 

access aids (headsticks, light pointers), modified 

or alternate keyboards, switches, special 

software, etc., that enable persons with 

disabilities to use a computer. This category 

includes speech recognition software. 

Environmental Control Primarily electronic systems that enable 

Systems someone with limited mobility to control various 

appliances, electronic aids, security systems, 

etc., in their room, home, or other surroundings. 

Home/Worksite Structural adaptations or fabrications in the 

Modifications home, worksite, or other area (ramps, lifts, 

bathroom changes) that remove or reduce 

physical barriers for an individual with a disability. 

84

Prosthetics and Orthotics Replacement, substitution, or augmentation of 

missing or malfunctioning body parts with artificial 

limbs or other orthotic aids (splints, braces, etc.). 

There are also prosthetics to assist with cognitive 

limitations or deficits, including audiotapes or 

pagers (that function as prompts or reminders). 

Seating and Positioning Accommodations to a wheelchair or other seating 

system to provide greater body stability, trunk/ 

head support and an upright posture, and 

reduction of pressure on the skin surface 

(cushions, contour seats, lumbar). 

Service Animals The Americans with Disabilities Act defines a 

service animal as any guide dog (for individuals 

who are blind or have low vision), signal dog (for 

individuals who are deaf or hard of hearing), or 

other animals individually trained to provide 

assistance to an individual with a disability. 

Wheelchairs/Mobility Aids Manual and electric wheelchairs, mobile bases for 

custom chairs, walkers, three-wheel scooters, and 

other utility vehicles for increasing personal 

mobility. 

Vehicle Modifications Adaptive driving aids, hand controls, wheelchair 

and other lifts, modified vans, or other motor 

vehicles used for personal transportation. 

Category Types of Assistive Technology 

follow exemplifies unique approaches to providing the core independent living 

services (individual and systems advocacy, peer counseling, information and referral, 

and independent living skills training) as well as additional services designed to 

meet the needs of the Indian communities it serves. 

85

ASSIST! to Independence 

Regional Resource Center for Assistive Technology


PO Box 4133


Tuba City, AZ 86045


Phone: (928) 283-6261; (888) 848-1449


Voice/TTY: (928) 283-6672


Fax: (928) 283-6284


E-mail: assist@cybertrails.com


Web site: www.assisttoindependence.org


Mike Blatchford, Executive Director


ASSIST! to Independence is a community-based nonprofit agency that was established


by and for people with disabilities and chronic health conditions to help fill some of the


gaps in service delivery. The agency serves as a consumer-driven community action


program to facilitate general awareness of disability-related issues, community access,


education, information sharing, assistive technology access, advocacy, and


independent living that is relevant and culturally appropriate for American Indians.


ASSIST! currently serves as the umbrella organization for five major programs: (1) The


Center for Independent Living; (2) The Regional Resource Center for Assistive


Technology; (3) The Special Needs Toy Lending Library; (4) The Functional Assessment


Clinic; and (5) The Sensory Integration Program. The organization is located in the


western part of the Navajo Reservation in Tuba City, Arizona, and its programs provide


services primarily to the Navajo, Hopi, and Southern Paiute Reservations; however,


anyone needing information and assistance in the northern part of the state is


welcome to request services or information (ASSIST!, 2002a).


ASSIST! operates the Technology Resource Center, providing access to both low-tech


and high-tech devices for people of all ages and varying abilities. Opportunities for


hands-on exploration allow individuals to make more informed choices about the


technology interventions that will work best for them. The ability to borrow a device to


“try out” in the appropriate setting also provides greater opportunity for proper device


selection and success. Most devices found in the Technology Resource Center are


available for short- or long-term loan (ASSIST!, 2002b).


The Technology Resource Center also maintains an inventory of school-based assistive


technology through a collaborative partnership with Southwest Human Development.


86

This technology is available for professionals working within school districts who need 

access to assistive devices for evaluation purposes (ASSIST!, 2002b). 

The following services are provided through the Center for Assistive Technology: 

• Equipment demonstration 

• Short-term or long-term assistive technology equipment loans 

• Training and education 

• Information and referral 

• Advocacy 

• Technical assistance 

• Comprehensive evaluations and assessments 

In addition, the Resource Center participates as a member of the Navajo Nation 

Assistive Technology Consortium, which is actively working to develop the availability of 

more assistive technology resources on or near the Navajo Nation (ASSIST!, 2002b). 

Native American Advocacy Project (NAAP) 

Tiwahe Access (Family Access) Program


PO Box 527


208 South Main Street


Winner, SD 57580


Phone: (605) 842-3977; (800) 303-3975


TTY: (605) 842-3977


Fax: (605) 842-3983


E-mail: admin@sdnaap.org


Web site: www.sdnaap.org


Marla Bull Bear, Executive Director


The mission of the Native American Advocacy Project is to empower members of the


American Indian Oyate in South Dakota who have developmental, physical, mental,


and/or neurobiological disabilities to actualize their potential. NAAP provides


education, training, advocacy, support, independent living skills, and referrals to


them and to their Tiospaye. NAAP is a statewide, nonprofit, consumer and family


membership organization for persons residing on and off lands of the nine tribal


nations in South Dakota. NAAP is chartered with both the State of South Dakota and


87

the Rosebud Sioux Tribe (where NAAP’s central office is located). NAAP is committed 

to providing support to the developing role of Native American consumers (persons 

with all types of disabilities) and their family members in system planning, 

decisionmaking, networking, advocacy, and service development for these 

populations. NAAP is also committed to being a cross-disability organization; they are 

inclusive of persons with all types of disabilities, not limiting efforts to only one or 

two disability groups but strengthening efforts on behalf of all persons with 

disabilities. This approach allows support to those persons with disabilities that have 

been under- or unrepresented in the disability movement (Native American Advocacy 

Project, 2002a). 

NAAP operates the Tiwahe Access (Family Access) home modifications and adaptive 

devices program, providing ramps, bathroom modifications, kitchen modifications, 

and helpful tools to increase independence. This program provides home 

modifications and devices that are necessary for overcoming barriers that 

substantially limit a consumer’s ability to function independently within a family or 

community and/or to obtain, maintain, or advance in employment. Some of the 

devices provided are reachers, doorbell indicators, eating utensils, personal hygiene 

and dressing aids, driving hand controls, environmental controls, and 

telecommunications adaptive devices. Home modifications include ramps, widened 

doorways, and bathroom and kitchen modifications (Native American Advocacy 

Project, 2002b). 

Resources 

On August 19, 1988, President Ronald Reagan signed into law the TechnologyRelated Assistance for Individuals with Disabilities Act (P.L. 100-407), also known as 

the Tech Act. In 1994, the Tech Act (P.L. 103-218) was reauthorized by President 

Clinton. In 1998, it was reauthorized by the Assistive Technology Act (P.L. 105-394). 

This Act provides funding in the development of statewide, consumer-responsive 

information and training programs for people with disabilities (RESNA, 2002b). 

Indians with disabilities and providers may benefit by contacting their State Assistive 

Technology Program. 

88

State Assistive Technology Financial Loan Programs 

and Other Loan Programs Serving Native Americans 

Funded under Title III, Alternative Financing Programs, of the Assistive Technology Act 

of 1998, the State Assistive Technology Financial Loan Programs are administered by 

NIDRR. These and other assistive technology loan programs may be of assistance to 

Indians with disabilities in obtaining financial loans to purchase needed assistive 

technology. (RESNA, 2002). 

General Assistive Technology Resources Available to Native Americans 

Researching and learning about assistive technology products and services can 

become an overwhelming experience. Fortunately, private and public assistive 

technology resources are available that provide valuable information and guidance in 

an organized fashion. 

Assistive Technology Advocacy 

Advocacy provides a mechanism through which consumers and professionals can 

influence policy and program decisions affecting individuals with disabilities. Selfadvocacy places value on individuals taking control of their lives and acting in their 

own best interest (see Advocating Change section). Self-advocacy requires an 

individual to be linked to information, understand complex rules, repeatedly 

communicate one’s needs to an impersonal bureaucracy in an effective manner, and 

be persistent. Systems advocacy, in particular, seeks to improve policy 

responsiveness, increase resource sharing, and facilitate program access (Clay, 2002). 

Systems advocacy may also present itself as an obstacle for individual Indians with 

disabilities due to the complex relationships between tribal governments, state 

governments, and the Federal Government, making targeted advocacy efforts difficult. 

However, systems advocacy has been critical to tribal governments in their goal to 

exercise self-determination and in the passage of the Self-Determination Act of 1976. 

Thus, through national organizations and an independent living center structure on a 

reservation, systems advocacy can work to make tribal governments more responsive 

89

in addressing the needs and issues of tribal members having disabilities without 

putting these needs and issues above those of the community (Clay, 2002). 

90

References 

ASSIST! to Independence. (2002a). National Council on Independent Living best 

practices for consumer involvement in assistive technology programs Assistive 

Technology Survey – 2002. Retrieved September 26, 2002, from 

www.assisttoindependence.org/ati/survey.html. 

ASSIST! to Independence. (2002b). The Regional Resource Center for Assistive 

Technology. Retrieved September 26, 2002, from www.assisttoindependence.org/ 

ati/resource.html. 

Clay, Julie Anna. (2002). Native American independent living. Retrieved October 7, 

2002, from www.aidtac.org/NativeIL.htm. 

DisabilityResources.org. (2002). Assistive technology—general. Retrieved September 

25, 2002, from www.disabilityresources.org/AT-GENERAL.html. 

Native American Advocacy Project. (2002a). Homepage. Retrieved September 26, 

2002, from www.sdnaap.org. 

Native American Advocacy Project. (2002b). Tiwahe Access. Retrieved September 26, 

2002, from www.sdnaap.org/tiwahe.htm. 

Neighborhood Legal Services, Inc. (2002a). Description of the National Advocacy 

Project. Retrieved September 27, 2002, from www.nls.org/natdisc.htm. 

Neighborhood Legal Services, Inc. (2002b). Homepage. Retrieved September 27, 

2002, from www.nls.org/index.html. 

Neighborhood Legal Services, Inc. (2002c). PAAT Directory. Retrieved September 27, 

2002, from www.nls.org/paatstat.htm. 

Rehabilitation Engineering and Assistive Technology Society of North America 

(RESNA). (2002a). Alternative Financing Technical Assistance Project. Retrieved 

September 25, 2002, from www.resna.org/AFTAP/index.html. 

Rehabilitation Engineering and Assistive Technology Society of North America 

(RESNA). (2002b). Technical Assistance Project. Retrieved September 25, 2002, 

from www.resna.org/taproject/index.html. 

Rehabtool.com. (2002). What’s assistive technology? Retrieved September 23, 

2002, from www.rehabtool.com/at.html. 

91

Washington Assistive Technology Alliance. (2002). Assistive technology. Retrieved 

September 23, 2002, from http://it.wce.wwu.edu/necc97/poster1/DoIt/ 

WebWhacker/WW684.html. 

92

Housing & Faciliti
Finding and sorting out choi

is what's so important and why w

excited about the awareness thi

process and the toolkit will bring 

Jessie's life. 

Jessie Stewart 

Claudia Kauffma

Jessie’s Mom 

HOUSING & FACILIT
Housing and Facilities 

Background 

It is estimated that of the 26 percent of American Indians and Alaska Natives living€

with a significant disability, as many as 94,000 individuals have a mobility or self-€

care limitation (Shuckahosee, 2000). In order to remain independent, many tribal€

members with disabilities living on tribal lands require support to make their homes,€

work environment, and other tribal facilities accessible and their active participation€

in tribal life possible. Though VR programs, with the cooperation of tribal€

governments, often make a good-faith effort to modify work environments on an as-€

needed basis so that they are suitable to€

individual needs, many challenges remain.€

The baseline housing conditions on tribal€

lands and limited funding for tribal€

housing programs may make meeting the€

needs of tribal members with disabilities€

seem insurmountable. According to a fact€

sheet prepared by the National American€

Indian Housing Council in 2000, between€

21 and 69 percent of homes are€

overcrowded and have serious physical€

deficiencies compared with 5.9 percent nationally (AIDTAC, 2001). In addition,€

there is a “113-year staff backlog of title search requests at the Bureau of Indian€

Affairs that impedes lending and stalls desperately needed housing initiatives”€

(AIDTAC, 2001, p. 12).€

Barriers to Service 

• Building/modification costs 

• Limited program funding 

• Administrative backlog for 

grants and protocol 

• Limited awareness of 

universal design feasibility 

93€
The Basics of Universal Design 

Universal design has also been called “life-span design,” “inclusive design,” and 

“trans-generational design.” Its goal is to develop guidelines for housing construction 

that would create a livable, marketable environment for everyone regardless of 

ability, age, or size (City of San Antonio, 2002). Following are the five essential 

features of universal design that meet federal disability legislation requirements and 

the needs of individuals with a variety of physical disabilities (for further information 

on housing accommodations needed by individuals who are deaf, hard of hearing, or 

blind or have low vision, please see the Assistive Technology section of the Toolkit): 

1.Provide one no-step entrance with beveled threshold. This may be at the front, 

side, or back of the house or garage entrance. 

2.Make doorways throughout the home at least 32 inches wide; hallways at least 

36 inches clear width. 

3.Reinforce walls around the toilet, bathtub, and shower stall so that grab bars 

may be added later, if needed. 

4.Install light switches and electrical controls no higher than 48 inches and 

electrical plugs no lower than 15 inches above the floor. 

5. Install lever handles on exterior and interior doors and on sinks. (City of San 

Antonio, 2002, p. 1). 

Figuring these features into builders’ costs of new construction, the City of San 

Antonio Planning Department arrives at a total of $371 to $670 per house. 

Comparatively, later modification for necessary access would result in a cost of 

between $3,350 and $5,402 per house (City of San Antonio, 2002). While actual 

construction costs will vary by locality, savings from the integration of universal 

design at the time of construction versus later modification can be expected. 

94€
UNIVERSAL DESIGN 

WHAT IS A VISITABLE HOME? 

Basic access and visitability can be achieved simply and inexpensively by incorporating universal 

design features into all new construction. Some features and recommendations include: 

One no-step entrance (may be at 

the front, side, back or garage 

entrance). 

Open living spaces providing 

ample room for maneuvering and 

allowing good visibility throughout 

the house. 

Doorways throughout the home at 

least 32 inches clear width with 

lever handles. 

Hallways at least 36 inches clear 

width. 

Appliance handles, electrical 

controls, and light switches no 

higher than 48 inches. 

Reinforced walls near the bathtub 

and toilet so grab bars may be 

installed. 

Prepared by the City of San Antonio 

Department of Planning, Disability Access Office 

Photographs by Kenny Braun courtesy of 

The Enterprise Foundation 

95€
Assessing Service Needs 

The first step to building a strong framework for services for people with disabilities 

is to know which services are currently available and which are not. The eight 

questions that follow were developed by the American Indian Disability Technical 

Assistance Center (AIDTAC) in order to begin this local assessment process. 

1. What does your tribe or tribally designated housing entity (TDHE) do to 

provide accessible housing for members with disabilities? 

2. Does your tribe or TDHE comply with Section 504 of the Rehabilitation 

Act? 

3. Does your tribe or TDHE retrofit existing houses when someone needs a 

bathroom modified or ramp built? 

4. What is your tribe or TDHE doing to make sure that people with 

disabilities have adequate accessible housing? 

5. What cultural or traditional issues may be barriers to providing accessible 

housing for people with disabilities? 

6. What are the major barriers to making more homes accessible on your 

reservation? 

7. What resources does your tribe need in order to overcome these 

barriers? 

8. What guidelines do you suggest for improving housing options for members 

with disabilities on your reservation? (AIDTAC, 2001, pp. 12-13). 

These questions can be used within a talking circle or group format to bring together 

community members with diverse perspectives and come to a full understanding of 

the spectrum of needs within your specific community. From these shared 

experiences, new understanding and wisdom may grow to move the process forward. 

When the time comes to develop a plan of action, the checklist developed by the 

City of San Antonio Department of Planning may be a useful starting point. It 

identifies eight steps to an “action plan outline for access compliance”: 

96€
1. Become Knowledgeable: Prepare a good-faith plan for immediate barrier 

removal. 

2. Survey Existing Conditions: Assemble a survey team including people 

with disabilities to assist in identifying barriers and developing solutions. 

You will need site and floor plans for making notes, and a tape measure. 

3. Summarize the Results: List all identified barriers and indicate the 

actual dimension/conditions of each. 

4. Consider Possible Solutions: Brainstorm ideas for barrier removal and 

determine probable costs for options. Decide which solutions best 

eliminate barriers at a reasonable cost. Consider practical alternatives. 

5. Prioritize Barrier Removal: Priority One: Accessible entrances into the 

facility and path of travel to reach those entrances; Priority Two: Access 

to goods and services; Priority Three: Access to restrooms; Priority Four: 

Any other measures necessary to provide access 

6. Remove All Barriers Identified as “Readily Achievable”: A “Checklist for 

Readily Achievable Barrier Removal” is available through the City of San 

Antonio’s Disability Access Office for use in completing a survey of 

potential architectural and communication barriers. 

7. Put a Good-Faith Action Plan in Place: It is critical to demonstrate a 

good-faith effort that includes documentation of everything you have 

done and how you plan to address future compliance requirements. 

8. Utilize Dynamic Process for Continuing Accessibility: Review your 

implementation plan each year to reevaluate whether more improvements 

have become readily achievable. (City of San Antonio, 2001) 

Model Approaches 

Partnerships between tribal programs working with the tribal council are essential to 

meeting the housing and facility accessibility needs of tribal members with 

disabilities. Partnerships with community organizations can also help to meet needs 

where tribal or federal funding comes up short. Even with limited resources, it is 

possible to make headway in prioritizing and responding to the needs of tribal 

97€
members with disabilities. The experience of the Oglala Lakota of the Pine Ridge 

Reservation is a case in point. 

Pine Ridge “Quad Squad”: Pine Ridge is home to the 17,775-member Oglala Lakota 

Tribe. The Pine Ridge Reservation includes seven counties with over 11,000 square 

miles and is situated in southwestern South Dakota on the Nebraska state line, 

about 50 miles east of the Wyoming border (Mni Sose, 2002). Jo White, director of 

the Pine Ridge “Quad Squad,” which was formed in 1989, has continued the 

tradition of advocacy for individuals with disabilities on the Pine Ridge Reservation by 

coordinating services with the VR program and partnership activities with the tribal 

housing authority. 

Challenge: With unemployment of nearly 84 percent (American Indian Relief Council, 

2002), the Pine Ridge Reservation is the poorest area of the United States and 

faces significant economic challenges in achieving accessibility in housing and 

facilities. 

Resolution: Despite this barrier, the tribal council, Oglala Sioux Tribal Housing 

Authority, and other tribal support services for individuals with disabilities led by the 

Quad Squad have worked together to increase accessibility on the reservation, 

identify individual needs, and develop a plan of response. Currently, the Housing 

Authority and the “Quad Squad” are working together to construct sidewalks and 

crossing lights to aid individuals who use wheelchairs or have another type of 

physical mobility disability. 

How it happened: The needs of tribal members with disabilities are represented on 

the tribal housing board by an ex-officio member who is also a consumer. This board 

member is instrumental in ensuring that the needs of tribal members with disabilities 

are prioritized in the five-year plan and subsequent yearly block grant plans created 

under the authority of the Native American Housing Assistance and SelfDetermination Act (NAHASDA). As a result, the Oglala have adopted the 5 percent 

rule of ADA, ensuring that 5 percent of all houses built are accessible. The Housing 

Authority maintains a waiting list of individuals with disabilities with accessibility 

needs. Currently, only six individuals are on this list, and for the first time, the Quad 

Squad has 10 ramps available for the immediate use of consumers; in the past, 

individuals have had to wait as long as one or two years for one to become available. 

98€
Partnerships with other community organizations, such as Native American Advocacy, 

and community church groups have helped to build this success as well. 

Tips from the field: Following are some suggestions from the Quad Squad experience: 

•Reach out to other organizations and tribal programs. Help is available, but one 

must find opportunities and build on them. 

•Develop a voice in the tribal council and relevant boards. In order to make the 

needs of individuals with disabilities known, one needs a share of the voice of 

the tribal governance. 

Making Plans a Reality 

A number of organizations (Native and non-Native), federal and state agencies, and 

publications can help in the development of accessible housing and facility services 

for your community. Five frequently asked questions have been identified regarding 

accessible housing and facility services and the development of programs and 

related issues. Find your question, or one that is similar, in the list below. 

Frequently Asked Questions 

1. Whom do I contact first for help in making my home or work place 

accessible? 

2. What legislation impacts housing for tribal members with disabilities, 

and how do I file a complaint if the laws are not being honored? 

3. Where do I learn more about universal design? 

4. Whom can I contact for technical assistance, training needs, 

networking opportunities, and information on housing? 

5. What types of funding are available for tribal housing programs looking 

to create accessible facilities for tribal members, and how do I apply? 

In the following pages, each question will be presented in bold with a short response 

and a recommendation of resources to contact for more information on the subject. 

Much of the contact information presented here was compiled with the assistance of 

the AIDTAC 2002 Resource Book (AIDTAC, 2002). If the information you are looking 

99€
for is not presented here, the Resource Book may provide further insight into your 

question. AIDTAC can be reached toll free at 1-866-4-AIDTAC or 1-866-424-3822, or 

via the Web at www.aidtac.org. The Internet sites for the agencies listed in this 

section may also prove useful in your own research. 

Whom do I contact first for help in making my home or work place 

accessible? 

Start by contacting your tribal housing authority and/or TDHE. The TDHE is the primary 

contact point for federal funds for housing and construction according to NAHASDA. 

The TDHE is designated by the tribe (and may double as the tribal housing authority or 

take membership from this group) to develop a five-year plan of action or overview of 

the direction the tribe will take in meeting its low-income housing needs as well as a 

yearly plan detailing the resources the tribe will use to meet these needs. The TDHE is 

then given funds allocated to the tribe in the form of a block grant. Each year 

approximately 540 tribes participate in this program for a total of approximately $640 

million. A formula determines the actual amount allocated per tribe. The TDHE sets its 

own housing and construction priorities. From building ramps to building ILCs or for 

projects to modify existing buildings, the TDHE may use its resources as it best sees fit 

according to the needs of its low-income community (Jacobsen, 2002). 

In many tribes, the Vocational Rehabilitation Office partners with the tribal housing 

authority and the tribal council to identify work place modification needs for tribal 

members with disabilities who train for work with tribal employers or with employers 

outside of tribal communities. As in the case of Pine Ridge, profiled in the Assistive 

Technology section, Vocational Rehabilitation Offices can serve as important advocates, 

assisting individuals with disabilities in raising the awareness and prioritization of their 

housing and accessibility needs. ILCs can also be an important source of information 

regarding housing and accessibility issues (see Independent Living section). 

What legislation impacts housing for tribal members with disabilities and 

how do I file a complaint if the laws are not being honored? 

The main legislation impacting housing for tribal members with disabilities consists 

of six acts. Five acts relate specifically to individuals with disabilities and provide for 

100€
accessibility in housing practices and procedures. The sixth reorganizes the U.S. 

Department of Housing and Urban Development (HUD) programs designed for Native 

American housing and provides another opportunity for individuals with disabilities to 

have their housing needs met. 

Rehabilitation Act, Section 504: This piece of legislation prohibits discrimination on 

the basis of disability and requires that new construction and newly altered facilities 

built with federal funds be accessible. Each federal agency providing funds is 

responsible for enforcing the Act, and complaints must be directed to the federal 

agency with authorization for the particular project in question (Makoa, 2002). 

The Architectural Barriers Act: This Act requires that buildings and facilities be 

accessible if, since 1968, they were “designed, built, or altered with certain federal 

funds, or if they are leased for occupancy by federal agencies” (Makoa, 2002). 

Accessibility standards cover things such as walks, ramps, curb ramps, entrances, 

elevators, and rest rooms. They are described in the Uniform Federal Accessibility 

Standards. Complaints may be filed with the Access Board (Makoa, 2002): 

Office of Compliance and Enforcement 

1331 F Street NW, Suite 1000 

Washington, DC 20004-1111 

Americans with Disabilities Act, Title II: ADA prohibits discrimination on the basis of 

disability in public accommodations in addition to its other charges (for a full description 

of the impact of ADA on tribal governments, please see the Federal Disability Law and 

Tribes section). ADA does not require a link to federal funds for application as the 

previous two acts do. The U.S. Department of Justice enforces Title III (Makoa, 2002). 

Fair Housing Act: This law prohibits discrimination on the basis of disability in the 

sale, rental, or financing of housing. Also, it provides for certain architectural 

accessibility requirements in new, multifamily housing. Complaints may be filed with 

HUD (Makoa, 2002). 

Native American Housing and Self-Determination Act: NAHASDA reorganizes the 

relationship between tribal governments and HUD, recognizing the right of self101€
governance of American Indian tribes. As a result of this legislation, the block grant 

programs were consolidated, and tribally designated housing authorities in each 

eligible tribe are asked to make their own prioritization regarding how these funds are 

to be used (Jacobsen, 2002). Title VI of this Act authorizes a loan guarantee program 

designed to help ensure better access to private capital markets for Indian tribes. 

Where do I learn more about universal design? 

The City of San Antonio is an example of best practices in the area of community-€

oriented universal design. For those looking to learn more about these strategies€

and for technical guidance, the City of San Antonio is a great place to start. For a€

more technical perspective, HUD offers assistance on its Web site. Information can€

also be obtained by phone through HUD. Finally, the Uniform Federal Accessibility€

Standards provide the exact federal guidelines for accessibility.€

Center for Universal Design


College of Design€

North Carolina State University€

50 Pullen Road, Brooks Hall, Room 104€

Campus Box 8613€

Raleigh, NC 27695-8613€

Phone: (800) 647-6777; (919) 515-3082€

Fax: (919) 515-7330€

E-mail: cud@ncsu.edu€

The Center for Universal Design is a national research, information, and technical€

assistance center that evaluates, develops, and promotes universal design in€

housing, public and commercial facilities, and related products.€

U.S. Architectural and Transportation Barriers Compliance Board


(Access Board)


Office of Technical and Information Services€

1331 F Street NW, Suite 1000€

Washington, DC 20004-1111€

Documents€

102€
Phone: (800) 872-2253€

TTY/TDD: (800) 993-2822€

Electronic Bulletin Board Service: (202) 272-5448€

This federal agency developed the ADA Accessibility Guidelines (ADAAG), which were€

adopted by the Department of Justice (DOJ) and the Department of Transportation€

(DOT) as enforceable standards and called the ADA Standards for Accessible Design.€

The Access Board provides technical assistance on the ADAAG regarding design and€

the removal of architectural, transportation, communication, and attitudinal barriers€

that affect persons with physical disabilities.€

Whom can I contact for technical assistance, training needs, networking 

opportunities, and research information on housing? 

Native American Indian Housing Council (NAIHC)


900 2nd Street NE, Suite 305€

Washington, DC 20002€

Phone: (202) 789-1754; (800) 284-9165€

Fax: (202) 789-1758€

Web site: http://naihc.indian.com/index.html€

NAIHC is a national membership organization that promotes, supports, and upholds€

tribal housing agencies in their efforts to provide culturally relevant, decent, safe,€

sanitary, and affordable housing for Native people in American Indian communities€

and Alaska Native villages.€

Center for Housing and New Community Economics (CHANCE)


Institute on Disability/UCE€

University of New Hampshire€

7 Leavitt Lane, Suite 101€

Durham, NH 03824-3522€

E-mail: dr v@cisunix.unh.edu€

CHANCE was established in March 2001. CHANCE’s mission is to improve and increase€

access to integrated, affordable, and accessible housing coordinated with, but separate€

from, personal assistance and supportive services. CHANCE’s purpose will be to offer€

103€
alternatives to approaches that segregate, congregate, and control people with 

disabilities. The IOD will work in partnership with American Disabled for Attendant 

Programs (ADAPT) in all aspects of the Center. ADAPT is a national organization that 

focuses on promoting services in the community for people with disabilities. 

The Consortium for Citizens with Disabilities (CCD) 

1730 K Street NW, Suite 1212 

Washington, DC 20006 

Phone: (202) 785-3388 

Fax: (202) 467-4179 

E-mail: Info@c-c-d.org 

CCD is a coalition of national consumer, advocacy, provider, and professional 

organizations headquartered in Washington, D.C. Since 1973, the CCD has 

advocated on behalf of people of all ages with physical and mental disabilities and 

their families. CCD does this by 

•Identifying and researching public policy issues, developing testimony and 

policy recommendations, and encouraging innovative solutions to public policy 

concerns. 

•Educating members of Congress in an effort to improve public policies and 

programs that foster independence, productivity, integration, and inclusion of 

people with disabilities. 

•Encouraging people with disabilities and their families to advocate for themselves 

and coordinating grassroots efforts to support these advocacy efforts. 

CCD has worked to achieve federal legislation and regulations that ensure that the 

54 million children and adults with disabilities are fully integrated into mainstream 

society. 

Fannie Mae Homepath Services 

Phone: (800) 7FANNIE; (800) 732-6643 

Web site: www.homepath.com/cgi-bin/WebObjects-4/HomePathWOF 

Fannie Mae is the largest source of home mortgage funds in the United States. 

Homepath.com is a Web site designed to help consumers find mortgage information. 

104€
A Fannie Mae Foundation publication promotes economic understanding and€

personal financial literacy among Native people and teaches Native Americans€

financial skills that help them make informed financial decisions for themselves,€

their families, and their communities.€

Housing Assistance Council (HAC)


National Office€

1025 Vermont Avenue NW, Suite 606€

Washington, DC 20005€

Phone: (202) 842-8600€

Fax: (202) 347-3441€

E-mail: hac@ruralhome.org€

Since 1971, this national nonprofit organization has worked to improve the€

availability of decent, affordable housing in rural areas of the United States by€

helping local organizations build affordable single- and multifamily homes for low-€

income people. HAC emphasizes local solutions, empowering the poor, reducing€

dependence, and using self-help strategies such as “sweat equity” construction.€

Special focus is on high-need groups and regions: Indian country, the Mississippi€

Delta, farmworkers, the Southwest border colonias, and Appalachia. If you have a€

general question or are not sure which office to contact, please contact the National€

Office at hac@ruralhome.org and HAC staff will determine who is best able to€

respond to you.€

National Association of Home Builders (NAHB)


Research Center€

400 Prince George’s Boulevard€

Upper Marlboro, MD 20774€

Phone: (301) 249-4000; (800) 638-8556€

Accessibility Concerns: (301) 430-6213; (301) 430-6234€

Fax: (301) 430-6180€

NAHB publishes Residential Remodeling and Universal Design: Making Homes More 

Comfortable and Accessible and houses the National Center for Seniors’ Housing 

Research. 

105€
National Low Income Housing Coalition (NLIHC)


1012 14th Street NW, Suite 610€

Washington, DC 20005€

Phone: (202) 662-1530€

Fax: (202) 393-1973€

E-mail: info@nlihc.org€

Web site: www.nlihc.org€

Established in 1974, NLIHC is dedicated solely to ending America’s affordable€

housing crisis. NLIHC educates, organizes, and advocates, ensuring decent,€

affordable housing within healthy neighborhoods for everyone. NLIHC provides up-to-€

date information, formulates policy, and educates the public on housing needs and€

the strategies for solutions.€

Neighborhood Reinvestment Training Institute


1325 G Street NW, Suite 800€

Washington, DC 20005€

Phone: (202) 220-2454; (800) 438-5547€

Fax: (202) 376-2168€

E-mail: nrti@nw.org€

The Neighborhood Reinvestment Training Institute is dedicated to providing the€

highest quality training to the staff and boards of organizations committed to€

improving the affordability of neighborhood housing, the vitality of neighborhood€

economies, and the quality of community life.€

Rural Housing Service National Office


U.S. Department of Agriculture€

Room 5037, South Building€

14th Street and Independence Avenue SW€

Washington, DC 20250€

Phone: (202) 720-4323€

Web site: www.rurdev.usda.gov/rhs/Feedback/feedback.htm€

The U.S. Department of Agriculture (USDA) promotes rural development programs€

including housing assistance programs. The USDA supports programs in three main€

106€
areas: community facilities, single-family housing, and multifamily housing. The Web 

site will direct you to the appropriate state agency for grant or program applications 

and information. 

What types of funding are available for tribal housing programs looking to 

create accessible facilities for tribal members, and how do I apply? 

As Jo White, founding member of the Quad Squad in Pine Ridge, South Dakota,€

knows well, “there is a lot of great stuff to help you live independently, but it costs€

money; and getting money takes a lot of time” (White, 2002). Though Ms. White was€

speaking about assistive technology, the same can be said for housing and facility€

accessibility services. The following two agencies are where the funding hunt begins.€

However, innovation, openness to partnerships, and creative collaboration will lead€

to other sources that will help to meet the needs of not only low-income tribal€

members, but those struggling to make ends meet as well. The list of agencies and€

contacts described in the previous section may also be used to seek funding€

sources and programs.€

U.S. Department of Housing and Urban Development


HUD Office of Public and Indian Housing;€

HUD Office of Native American Programs€

451 7th Street SW€

Washington, DC 20410€

Phone: (202) 708-1112€

Fax: (202) 708-1455€

Web site: www.hud.gov/groups/nativeamericans.cfm€

HUD offers programs, assistance, and loan programs specifically for Native American€

tribes, organizations, and, sometimes, individuals. HUD offers information on basic€

homebuying, fair housing, and housing counseling. The HUD Office of Native€

American Programs offers grant assistance through four main programs; two are€

focused on tribal communities and two are focused on individuals. The Codetalk Web€

site administered by HUD is also an excellent resource for program information.€

107€
Bureau of Indian Affairs


Office of Public Affairs€

1849 C Street, NW – MS-4542-MIB€

Washington, DC 20240-0001€

Phone: (202) 208-3711€

Fax: (202) 501-1516€

Web site: www.doi.gov€

BIA’s mission is to enhance the quality of life, to promote economic opportunity, and€

to protect and improve the trust assets of American Indians, Indian tribes, and€

Alaska Natives. BIA seeks to accomplish this by delivering quality services and€

maintaining government-to-government relationships within the spirit of Indian self-€

determination. The Bureau has limited funds available for road maintenance and low-€

income housing improvement programs. According to Bureau staff, the agency€

receives as many as 5,800 applicants for their low-income housing improvement€

grants. With a budget of $23 million per year, BIA is able to fill only approximately€

500 requests; the waiting list is extensive (Hinkel, 2002). Currently, access to the€

Department of the Interior Web site is restricted in compliance with a court order.€

108€
References 

American Indian Disability Technical Assistance Center (AIDTAC). (2002). AIDTAC 

Resource Book. Missoula: The University of Montana, Rural Institute on 

Disabilities. 

American Indian Disability Technical Assistance Center (AIDTAC). (2001). A Short 

Guide to Developing Disability Infrastructure on Reservations. Missoula: The 

University of Montana, Rural Institute on Disabilities. 

American Indian Relief Council (AIRC). (2002). Pine Ridge Reservation. Retrieved 

October 8, 2002, from www.airc.org/reservations/pineridge.html. 

City of San Antonio Planning Department, Disability Access Office and Enterprise 

Foundation. (2001). Universal design 2001. 

City of San Antonio Planning Department, Disability Access Office and Enterprise 

Foundation. Universal design. Flyer. 

Hinkel, June. Bureau of Indian Affairs. (September 17, 2002). Telephone interview by 

Ara Walline. 

Jacobsen, Donna, U.S. Department of Housing and Urban Development. (October 4, 

2002). Telephone interview by Ara Walline. 

Makoa. (2002). The Architectural Barriers Act and Other Access Laws. Retrieved 

October 4, 2002, from www.makoa.org/gov/g15.htm. 

Mni Sose Intertribal Water Rights Coalition. (2002). Oglala Sioux Tribe Community 

Environmental Profile. Retrieved October 8, 2002, from www.mnisose.org/ 

profiles/oglala.htm. 

Shuckahosee, Robert, AIDTAC Rural Institute on Disabilities. (2000). Disability issues 

and Indian housing: Section 504 is a right! Missoula: University of Montana. 

South Dakota Resource Directory. Retrieved October 23, 2002, from 

www.state.sd.us/dhs/drs/ADA/resourcedir/stateada.htm 

U.S. Department of Justice. (2001). A Guide to Disability Rights. 

White, Jo. (September 9, 2002). Telephone interview by Martina Whelshula. 

109€
Transportation 
Cordia LaFontai

There are a lot of hidden 

disabilities and we need to make 

people aware of this...even if you 

don’t look disabled, like with epilepsy

people can learn to realize this an

accept us. I have my driver’s licens

now and am capable of going place

without having seizures or blackout

because of my surgery. Medicine 

alone didn’t control these condition

We need better awareness of help 

that’s available to us, like surgery 

and pharmacy services. 

TRANSPORTATION 
Transportation 

Background 

The spectrum of transportation needs and barriers in Indian country is as diverse as


the land itself. Among the 550 federally recognized tribes, the size, climate, and


infrastructure of tribal lands vary, from the urban-centered Oneida Nation in Green Bay,


Wisconsin, to the rural-based


Cook-Inlet Tribe in the greater


Anchorage area of Alaska.


Correspondingly, services range


from the dedicated community


health representatives who


provide primary transportation


services for the Yakama Nation


in Washington State to the


dispatch-operated fleet of fully


accessible vans operated by the


Pueblo of the Zuni in Northwest


New Mexico. In 1995, only 19


tribes had transportation


programs funded by the Federal


Transit Administration’s Section


18 Federal Transit Grant for Non-


Urban Areas (Community


Transportation Association of America, 2002). Transportation resources and needs


remain out of sync in many areas today.


Barriers to Service 

• Remoteness and isolation (distance to 

services) 

• Limited public transportation services 

• Lack of accessibility (i.e., roads, providers, 

accommodations) 

• Economic hardship in private 

transportation ownership (no money for 

car, insurance, maintenance, other 

transportation) 

• Driver’s license (limited drivers, 

suspension, inaccessibility) 

• Limited public transportation operation 

hours and service area (no evening or 

weekend transportation) 

Though each tribe is challenged to assess its own needs, match those to the services


currently provided, and determine where the gaps in services lie, there are some


111

common struggles among individuals with disabilities across the nation. Transportation 

for tribal members with disabilities living on tribal lands is complicated by the high cost 

and in some cases physical impossibility of owning, adapting, insuring, and 

maintaining vehicles for personal use. Without a reliable tribal public transportation 

system to rely on, these individuals must rely on friends and family to meet their 

health, medical, employment, social, and household needs, or go without. An 

individual’s level of independence is thus often determined to a greater extent by 

community resources, or lack of them, than by his/her own physical capabilities. 

This section will provide tools for assessing your own tribal program, describe 

strategies that other tribes and service providers have used to overcome the barriers 

in their communities, and present resources and advocates that are available to 

assist in the development and implementation of your own action plan to improve 

transportation and access for people with disabilities in your community. 

Assessing Service Needs 

The first step to building a strong framework for services for people with disabilities is 

to know which services are currently available and which are not. The seven questions 

that follow were developed by AIDTAC in order to begin this assessment process. It is 

suggested that they be used within a talking circle or group format to bring together 

community members with diverse perspectives and to come to a full understanding of 

the spectrum of needs within your specific community. From these shared experiences, 

new understanding and wisdom may grow to move the process forward. 

1. What transportation services are available on your reservation? 

2. Are people with disabilities able to use these transportation services? 

3. What is your tribe doing to make sure that people with disabilities have 

adequate transportation? 

4. What are the cultural or traditional issues that should be addressed as barriers 

to transportation for people with disabilities? 

5. What are the major barriers to making transportation on your reservation 

accessible to people with disabilities? 

6. What resources does your tribe need in order to overcome these barriers? 

112

7. What guidelines do you suggest for removing transportation barriers on your 

reservation? (AIDTAC, 2001, pp. 10-11) 

Definitions 

The following brief list of definitions developed by the National Transit Resource 

Center will assist you in navigating the resource information currently available as 

you look to grow and develop your existing transportation framework (Community 

Transportation Association of America, 2002). In this section, you will find 

descriptions of the variety of service structures currently used to meet the needs of 

individuals with disabilities. For a more complete glossary, the Web site of the 

National Transit Resource Center, Community Transportation Association of America, 

provides a good starting point (www.ctaa.org/ntrc/glossary.asp). 

Accessibility: The extent to which facilities, including transit vehicles, are barrier-free 

and can be used by people who have disabilities, including wheelchair users. 

Coordination: A cooperative arrangement between transportation providers and 

organizations needing transportation services. Coordination models can range in 

scope from shared use of facilities, training, or maintenance to integrated 

brokerages or consolidated transportation service providers. 

Curb-to-Curb Service: A common designation for paratransit services. The transit 

vehicle picks up and discharges passengers at the curb or driveway in front of their 

home or destination. In curb-to-curb service the driver does not assist the passenger 

along walks or steps to the door of the home or other destination. 

Demand-Response Service: The type of transit service where individual passengers 

can request transportation from a specific location to another specific location at a 

certain time (also called “dial-a-ride”). Transit vehicles providing demand-response 

service do not follow a fixed route but travel throughout the community transporting 

passengers according to their specific requests. These services usually, but not 

always, require advance reservations. 

Deviated Fixed Route: This type of transit is a hybrid of fixed-route and demand113

response services. A bus or van passes along fixed stops and keeps to a timetable; 

however, the bus or van can deviate from its course between two stops to go to a 

specific location for a prescheduled request. Often used to provide accessibility to 

persons with disabilities. 

Door-to-Door Services: A form of paratransit service that includes passenger 

assistance between the vehicle and the door of his or her home or other destination. 

A higher level of service than curb-to-curb, yet not as specialized as “door-throughdoor” service (where the driver actually provides assistance within the origin or 

destination). 

Fixed Route: Transit services where vehicles run on regular, predesignated, 

prescheduled routes, with no deviation. Typically, fixed-route service is characterized 

by printed schedules or timetables, designated bus stops where passengers board 

and exit, and the use of larger transit vehicles. 

Guaranteed Ride Home: Program that encourages employees to carpool, use transit, 

bike, or walk to work by guaranteeing them a ride home in case they cannot take the 

same mode home (e.g., if they need to work late or if an emergency occurs). 

Medicaid: Also known as Medical Assistance, this is a health care program for lowincome and other “medically needy” persons. It is jointly funded by state and federal 

governments. The Medicaid program pays for transportation to nonemergency medical 

appointments if the recipient has no other means to travel to the appointment. 

Paratransit: Types of passenger transportation that are more flexible than 

conventional fixed-route transit but more structured than the use of private 

automobiles. Paratransit includes demand-response transportation services, 

subscription bus services, shared-ride taxis, car-pooling and vanpooling, and so on. 

Most often refers to wheelchair-accessible, demand-response van service. 

Rideshare Program: A rideshare program facilitates the formation of carpools and 

vanpools, usually for work trips. A database is maintained for the ride times, origins, 

destinations, and driver/rider preferences of users and potential users. Those 

requesting to join an existing pool or looking for riders are matched by program staff 

114

with other appropriate persons. In rural areas, a rideshare program is often used to 

coordinate Medicaid or volunteer transportation. 

Service Route: Another hybrid between fixed-route and demand-response service. 

Service routes are established between targeted neighborhoods and service areas 

that riders want to reach. Similar to deviated fixed routes, service routes are 

characterized by flexibility and deviation from fixed-route intervals. However, while 

deviated fixed routes require advance reservations, service routes do not. A service 

route can include both regular, predetermined bus stops and/or allow riders to hail 

the vehicle and request a drop-off anywhere along the route. 

Technical Assistance: Nonfinancial support to help accomplish program goals, such 

as training, consulting, research, or evaluation. 

User-Side Subsidy: A transportation funding structure in which qualified users 

(usually economically disadvantaged persons) are able to purchase vouchers for 

transportation services at a portion of their worth. The users then may use the 

vouchers to purchase transportation from any participating provider. The vouchers 

are redeemed by the provider at full value and the provider is reimbursed by the 

funding agency for the full value. 

Vanpool: A prearranged ridesharing service in which a number of people travel 

together on a regular basis in a van. Vanpools may be publicly operated, employer 

operated, individually owned, or leased. 

Model Approaches 

Recognizing that a weak transportation infrastructure may limit economic 

opportunities and pose a substantial barrier to accessing essential health and social 

services for individuals with disabilities as well as other tribal members, several 

tribes have developed model transportation systems. In developing these systems, 

tribes have tapped funding opportunities from a variety of state and federal sources. 

The end result has been transportation systems that are fully accessible to people 

with disabilities and that link these individuals to employment centers and health 

and human services programs. 

115

Pueblo of the Zuni 

The Pueblo of the Zuni is the largest of 19 pueblos in northwest New Mexico. It 

serves a population of 11,000 people and covers 1,000 square miles. Twelve years 

ago, Program Director Larry Alflen recognized transportation as one of the 

community’s biggest barriers to service provision (Alflen, 2002). The profile that 

follows describes the work that has been completed so far. 

Challenge: Situated 40 miles north of Gallup and 150 miles west of Albuquerque, 

the pueblo’s remoteness and isolation caused considerable difficulty for tribal 

members to access services, particularly those tribal members with disabilities. 

Resolution: Today, the Pueblo of the Zuni provides approximately 33,000 trips a year 

around the community, and up to 200 trips per day. The transportation program 

operates several 15-passenger vans (some with wheelchair lifts), is accessible to all 

tribal members, including those with disabilities, and is demand responsive (a 

dispatcher coordinates transportation requests). It also utilizes peer drivers to meet 

the needs of the community. In addition, several drivers and their dispatcher are 

graduates of the VR program. 

How it happened: The program is funded through a number of grants: Sections 5311 

and 5310 of the Transportation Act, otherwise known as the Small Urban and Rural 

Transportation Grant and the Capital Program for Elderly and Disabled Transportation; 

demonstration projects sponsored by the Association of Programs for Rural Independent 

Living (APRIL); a State of New Mexico vocational rehabilitation transportation grant; and 

endorsement by Medicaid for transportation reimbursement for services provided to 

individuals with disabilities. Most of these grants require reapplication every year. 

Developing strong relationships with agency grants administrators is key to understanding 

how to develop and sustain competitive proposals. 

Tips from the field: 

• Look at a variety of different opportunities to meet as many needs as possible. 

•	 Develop strong relationships with agency grants administrators in order to 

understand how to develop competitive proposals. 

• Explore overlaps in service needs and program opportunities. 

116

Confederated Salish and Kootenai Tribes 

The Flathead Reservation, home of the Confederated Salish and Kootenai Tribes, 

spans 1.5 million acres in seven communities. VR Program Director Arlene Templer 

has been working with program staff to develop transportation resources to connect 

tribal members to employment opportunities (Templer, 2002). The following profile, 

which is based on a telephone interview, depicts a program that continues to evolve. 

Challenge: Remoteness and isolation are the primary barriers for this community as 

well. Many tribal members are as far as an hour away from the tribal complex and 

tribal health and human service offices where the majority of services are provided. 

Resolution: Transportation needs were integrated into VR, elderly, and independent 

living grant proposals. In this way the resolution to the barrier became part of the 

process of strengthening existing services. The program uses a number of approaches 

and still recognizes that challenges remain in the implementation of the program even 

after it is developed and operational. The program uses a voucher system but sees 

that as a limited option because there are not many service providers. This limitation 

has led the program director to seek a more long-term resolution. Using accessible 

buses, vans, and cars, the program is developing a combination fixed-route dispatch 

service in collaboration with the Salish Kootenai College. 

How it happened: The Confederated Salish and Kootenai Tribes responded to their 

transportation need by integrating services and seeking technical assistance through 

their extensive network of partnering agencies. By taking a two-pronged approach, 

they can offer temporary transportation services to supplement their VR, elderly 

services, and services for individuals with a disability while working to develop a 

more comprehensive service that is tailored to their community’s specific need. 

Tips from the field: 

•	 Network with service providers, agencies offering grants, and technical assistance 

organizations in order to understand the service options available to your community. 

•	 Consider integrating transportation services with the programs that 

transportation supports (e.g., vocational rehabilitation and job employment, 

education programs, elderly services, and disability services). 

117

Other Programs 

Several other tribes have developed strong transportation programs in their 

community. Among these are the Navajo Transit System in Arizona, the Choctaw 

Nation in Mississippi, the Chicksaw Nation Transportation System in Oklahoma, and 

the Shoshone and Arapaho Nation Transit System in Wyoming. Each of these 

programs operates fully accessible paratransit vans or vehicles that are ADA 

compliant. While empirical evidence has not been gathered regarding consumer 

satisfaction with these services, it is reasonable to believe that these systems have 

added another degree of independence for individuals with disabilities in these 

communities as they are more readily connected to employment and health and 

human services programs (Langwell and Sutton, 2002). 

Making Plans a Reality 

A number of organizations (Native and non-Native), federal and state agencies, and 

publications are available to help in the development of transportation services for 

your community. Six frequently asked questions have been identified regarding 

transportation services, the development of programs, and related issues. Find your 

question, or one that is similar, in the list below. 

Frequently Asked Questions 

1. How do you find out about transportation services in your area? 

2. What do you do if there are no transportation services in your area? 

3. How do you assess the transportation needs and develop a service 

network in your community? 

4. How do you find funding to support transportation services and 

programs? 

5. Who provides assistance with compliance? 

6. What legislation on the horizon could impact transportation service 

funding? How do you keep informed about the impact of pending 

legislation on transportation in tribal communities? 

118

In the following pages, each question will be presented in bold with a short response 

and a recommendation of resources to contact for more information on the subject. 

Much of the contact information presented here was compiled with the assistance of 

the AIDTAC 2002 Resource Book. If the information you are looking for is not 

presented here, the AIDTAC Resource Book may provide further insight into your 

question. AIDTAC can be reached toll free at 1-866-4-AIDTAC (1-866-424-3822), or on 

the Web at www.aidtac.org. The Internet sites for the agencies listed in this section 

may also prove useful in your own research. 

1. How do you find out about transportation services in your area? 

Begin by contacting your tribe. Transportation programs are most often affiliated with 

health care services or VR and employment services. 

When greater distances are involved, a national database can assist you in locating 

and scheduling transportation and accommodation, whether it be air or ground 

transportation that you require. The information following provides a more extensive 

description of this service. 

Project ACTION Accessible Traveler’s Database 

Phone: (202) 347-3066; (800) 659-6428


TTY/TDD: (202) 347-7385


Web site: www.projectaction.org/paWeb/index.htm


This database provides information about availability of local public transit systems


(including private shuttle and taxi services) that are paratransit compatible. The


database organizes service information by state and city, aiding travelers in planning and


scheduling transportation at unfamiliar destinations as well as assisting individuals with


disabilities in identifying existing services within their own communities. More


specifically, the database includes seven types of service providers:


• Public urban and rural transit operators 

• Accessible van rental companies 

• Private bus/tour companies with accessible vehicles 

• Accessible taxis 

• Airport transportation 

119

• Hotel-motel shuttles 

•	 National 800 numbers (domestic airlines, Greyhound Intercity Services, Amtrak, 

companies with accessible car rental, and major hotel chains) 

Each entry contains contact information for the service provider as well as hours of 

operation, paratransit fare, eligibility, service route, and advance reservation 

requirements. If you do not have access to the Internet, you may contact Easter 

Seals Project ACTION directly for assistance. 

2. What do you do if there are no transportation services in your area? 

If your community has not developed a transportation assistance program that is 

accessible to you or a family member with a disability, it does not mean that you or 

your friend or family member is alone in this need. Contacting your tribal health, 

education, or VR program will still be a good starting point. Using the tips in the 

Advocating Change section of this Toolkit and the resources of your tribe’s program 

staff, identify and meet with other members of the community who may have similar 

transportation concerns. 

This grassroots approach was incredibly successful for members of the Hopi Nation 

in Arizona. The early intervention program, special activity day, and newly formed VR 

program all grew out of the passionate commitment of a core group of parents and 

community members who identified a service need, educated themselves about the 

topic, formed a plan, and worked for change. 

3. How do you assess the transportation needs and develop a service 

network in your community? 

For help in assessing the service needs of your community and developing a program 

suited to those needs, a variety of organizations are available to guide you through 

the process. The following groups can direct you to resources, inform you about 

meetings and conferences on the topics you are interested in, and designate a 

technical liaison to work with you one-on-one in answering your questions. Groups 

specializing in independent living services, such as APRIL, may also provide 

assistance on transportation development (see Independent Living section). 

120

American Indian Disability Technical Assistance Center (AIDTAC) 

The University of Montana Rural Institute: Center of Excellence in Disability


Education, Research and Services


52 Corbin Hall 


Missoula, MT 59812-7056


Phone: (866) 4-AIDTAC; (866) 424-3822


Fax: (406) 243-2349


Web site: www.aidtac.org


AIDTAC is a Native American organization whose mission is to provide information


and technical assistance to AI/AN tribes as they build their capacity to develop and


implement culturally appropriate laws and policies, cross-cutting infrastructure, and


direct program services for tribal members with disabilities. AIDTAC provides


excellent information about funding opportunities, training seminars and workshops,


and Internet research links. Eight staff members and five subcontractors are currently


employed by the organization to provide assistance to consumers.


The National Transit Resource Center 

Community Transportation Association of America (CTAA)


1341 G Street NW, 10th Floor


Washington, DC 20005


Phone: (202) 628-1480


Fax: (202) 737-9197


Web site: www.ctaa.org/ntrc/is_nativeamerican.asp


Contact: Chris Zeilinger; Phone: (202) 661-0217


The Resource Center recognizes the transportation needs and barriers in Indian


country and offers specific resources for tribal governments and programs in addition


to meeting its larger charge to support public and community transportation efforts


serving community planners, transit providers, and on-the-move citizens with


instructional briefs, studies, and reports, collected data, legislative facts,


professional peer support, advice, and mobility assistance. In addition to the USDA


program described below, the CTAA also works with the Labor and Transit


Administrations to provide service support. Every January, it updates and publishes


a joint funding and resource guide for tribal programs. Its publications include


“Transportation in Indian Country: Getting Started,” with worksheet guides to assist


121

program developers; “American Indian Transportation: Issues and Successful 

Models,” with extensive program and funding information; and “Welfare Reform in 

Indian Country: Current Trends and Future Directions.” 

USDA Tribal Passenger Technical Assistance Program 

National Transit Resource Center


Community Transportation Association of America


Phone: (202) 628-1480, ext. 119


Fax: (202) 737-9197


Web site: www.ctaa.org/ntrc/usda/projects/tpttap_brochure.asp


This program is designed to help tribal communities enhance economic growth and


development by improving transportation services. It provides planning assistance for


facility development, transit service improvements and expansion, new system start-up,


policy and procedure development, marketing, transportation coordination, training, and


public transit problem-solving activities. Federally recognized tribes are eligible to receive


assistance. Tribes must complete and submit an application to CTAA for review, scoring,


and ranking. Projects are initiated according to this approval process.


Easter Seals Project ACTION 

(Accessible Community Transportation in Our Nation)


700 13th Street NW, Suite 200


Washington, DC 20005


Phone: (202) 347-3066; (800) 659-6428


TTY/TDD: (202) 347-7385


Fax: (202) 737-7914


E-mail: project_action@opa.easter-seals.org


Web site: www.projectaction.org


Funded through a cooperative agreement with the U.S. Department of Transportation


and the Federal Transportation Administration, Easter Seals Project ACTION (ESPA)


promotes cooperation between the transportation industry and the disability


community to increase mobility for people with disabilities under ADA and beyond.


Project ACTION offers various resources, as well as training and technical assistance,


in an effort to make ADA work for everyone, every day. Congressionally mandated


priority areas include transportation needs assessment of people with disabilities in


122

local communities; outreach and marketing strategies, training for transit providers 

and consumers with disabilities, and technology to eliminate barriers to 

transportation accessibility. 

ESPA has created a solid outlet for information dissemination through the development 

of a resource center, clearinghouse, an 800 number, and Web site and participation in 

technical assistance conferences. All training curricula, manuals, models, and 

videotapes are available at no cost. Funding has been mandated for this project 

through 2003 under the Transportation Equity Act for the Twenty-first Century. 

Transportation Research Board (TRB) 

2001 Wisconsin Avenue NW, Green Building


Washington, DC 20007


Phone: (202) 334-2934


Fax: (202) 334-2003


Web site: http://trb.org


The TRB is a unit of the National Research Council, a private, nonprofit institution whose


mission is to promote innovation and progress in transportation by stimulating and


conducting research, facilitating the dissemination of information, and encouraging the


implementation of research results. Cooperative research programs fund research


projects that seek to answer transportation problems solicited by community programs—


research ideas can be directed to this agency for consideration.The TRB is funding an


ongoing research project entitled “Increasing Native American Participation in Programs


and Services of the Federal Transit Administration.” The TRB also hosts an annual


conference on transportation issues that attracts as many as 8,000 professionals from


throughout the United States and abroad.


U.S. Department of Transportation (DOT) 

400 7th Street SW 

Washington, DC 20590 

Phone: (202) 366-4000 

Web site: www.dot.gov 

DOT oversees the formation of national transportation policy and promotes 

intermodal transportation. It administers the budget authority for a number of grant 

123

programs accessible to AI/AN tribes. Several agencies under this authority such as 

the Federal Highway Administration also have Native American liaisons that work 

directly with tribes. Resources such as the toll-free Hotline to Assist Air Travelers with 

Disabilities (operated between the hours of 7 AM and 11 PM EST daily at 1-800-778-

4838 or TTY 1-800-455-9880) have been implemented to fulfill the responsibility of 

DOT under ADA and other applicable legislation. 

National Rural Transit Assistance Program (RTAP) 

Federal Transit Administration


TransNet Program


Phone: (800) 527-8279


Current information on American Indian transportation issues and practices and how


you can replicate them in your community is available via the TransNet service at the


hotline above. This service will match you to a networker whose particular


experience will be relevant (Shawn, 2002, p. 9).


In addition to this service, each state operates a rural transit assistance program to


provide training, technical assistance, and resource information to transportation


providers. The National Transit hotline may be accessed at 1-800-527-8279. It can


provide you with a variety of information: answers to simple or complex questions, how


to solve a transit problem, written materials, and referrals to peers with expertise in the


start-up and operation of tribal transportation services (Shawn, 2002).


4. How do you find funding to support transportation services and 

programs? 

According to the issue brief developed by the World Institute on Disability and 

excerpted by APRIL, in 1999, only 5 percent of transportation dollars were allocated 

to serve the 27 percent of the population living in rural America (including those 

living on tribal lands), a disproportionate number of which are disabled (Gonzales, 

Seekins, and Kasnitz, 1999). Clearly, identifying funding sources and completing a 

competitive application are challenges for many new and developing transportation 

systems in rural locations. Tribal programs are no exception. 

Tribes with successful transportation programs, like those profiled above, develop a 

124

budget through a combination of funding sources: grants from multiple agencies and 

organizations, tribal revenue, and creative collaborations. Funds can be made 

available to transportation programs through federal and state agencies or as a 

result of legislative authority. The legislation authorizing transportation for individuals 

with disabilities as well as the primary agencies providing funds to programs is 

described below. These descriptions can serve as leads for you to follow up with and 

identify funding sources specific to your unique program needs. 

Laws Addressing Transportation Rights of Individuals with Disabilities 

Many of these descriptions are based on the references provided by the NTRC Web 

site Glossary. Please visit www.ctaa.org/ntrc/glossary.asp for more information. 

Americans with Disabilities Act (ADA): Passed by Congress in 1990, this Act 

mandates equal opportunities for persons with disabilities in the areas of 

employment, transportation, communications, and public accommodations. Under 

this Act, most transportation providers are obliged to purchase lift-equipped vehicles 

for their fixed-route services and must ensure system-wide accessibility of their 

demand-responsive services to persons with disabilities. Public transit providers also 

must supplement their fixed-route services with paratransit services for those 

persons unable to use fixed-route service because of their disability. 

Transportation Act: Section 5310: The section of the Federal Transit Act that 

authorizes capital assistance to states for transportation programs that serve the 

elderly and people with disabilities. States distribute Section 5310 funds to local 

operators, in both rural and urban settings, who are either nonprofit organizations or 

the lead agencies in coordinated transportation programs. 

Section 5311: The section of the Federal Transit Act that authorizes capital and 

operating assistance grants to public transit systems in areas with populations of 

less than 50,000. 

Workforce Investment Act: This 1998 legislation consolidates the former Job 

Training Partnership Act and many other federal job training programs into statemanaged block grants. This law also replaces Private Industry Councils with 

125

Workforce Investment Boards. The Act authorizes the provision of supportive services 

(e.g., transportation) to assist participants receiving the other services and the 

provision of temporary income support to enable participants to remain in training. 

Older Americans Act: First passed in 1965, this federal law established a network of 

services and programs for older people. This network provides supportive services, 

including transportation and nutrition services and works with public and private 

agencies that serve the needs of older individuals. 

Transportation Equity Act for the Twenty-first Century (TEA-21): This 1998 

legislation authorizes approximately $217 billion for highways, highway safety, and 

mass transportation until fiscal year 2003. 

Intermodal Surface Transportation Efficiency Act of 1991 (ISTEA): Administered by 

the Federal Transit Administration, this Act is the principal source of federal financial 

assistance for public transportation. Additional DOT funds may be available through 

ISTEA’s flexible funding provisions, which allow states to transfer federal highway 

funds to transit programs for capital projects. Many states have found ISTEA to be a 

valuable mechanism for acquiring additional vehicles and facilities for their rural 

transit activities, including some American Indian transit programs (Shawn, 2002). 

Social Security Act, Title XIX: This section of the Social Security Act describes, among 

others, the eligibility determination and transportation services offered by Medicaid 

programs for individuals with disabilities and elderly individuals with low income (see 

Centers for Medicare & Medicaid Services contact information on following page). 

Funding Sources for Programs 

Federal Transit Administration (FTA) 

400 7th Street SW


Washington, DC 20590


Phone: (202) 366-4043


Fax: (202) 366-3472


Web site: www.fta.dot.gov/office/regional


126

A component of the U.S. Department of Transportation that regulates and helps fund 

public transportation, FTA provides financial assistance for capital and operating 

costs and also sponsors research, training, technical assistance, and demonstration 

programs. FTA was created by the passage of the Urban Mass Transportation Act of 

1964. In addition to the national office referenced above, 10 regional offices and 5 

metro offices provide contact points. 

Administration on Aging 

330 Independence Avenue SW


Washington, DC 20201


Phone: (800) 677-1116 (Eldercare Locator: finds elder services in locality);


(202) 619-7501 (National Aging Info Center: technical info and public 

inquiries); (202) 401-4541 (Office of Assistant Secretary for Aging: 

congressional and media inquiries) 

Fax: (202) 260-1012 

Web site: www.AOA.dhhs.gov 

The Administration on Aging agency within the U.S. Department of Health and Human 

Services oversees the implementation of the Older Americans Act, which provides funds 

to meet the needs of American Indian elders. Services provided under Title VI include 

nutrition, information, and referral and transportation services. The Area Agency on Aging 

is the local entity that plans senior services and advocates for the elderly within their 

communities, administering provisions of the Older Americans Act on this level. 

Centers for Medicare & Medicaid Services 

7500 Security Boulevard 

Baltimore, MD 21244-1850 

Phone: (410) 786-3000 

Web site: www.hcfa.gov 

Also known as Medical Assistance, this is a health care program for low-income and 

other “medically needy” persons. It is jointly funded by state and federal governments. 

The Medicaid program pays for transportation to nonemergency medical appointments 

if the recipient has no other means to travel to the appointment. Developing a local 

reimbursement relationship with the Medicaid program office can be an important 

strategy for tribes to build self-sustaining transportation systems. 

127

Temporary Aid to Needy Families (TANF) 

Administration for Children and Families


U.S. Department of Health and Human Services (HHS)


Division of Tribal Services


370 L’Enfant Promenade


Washington, DC 20447


Phone: (202) 401-9214


Web site: www.acf.dhhs.gov/programs/dts/rcontact.htm


Spurred on by the passage of the landmark welfare reform legislation—the Personal


Responsibility and Work Opportunity Reconciliation Act of 1996 (P.L. 104-193)—TANF


is a program of block grants to states to help them meet the needs of poor families.


It replaces Aid to Families with Dependent Children, JOBS, Emergency Assistance,


and some other preceding federal welfare programs. Because of TANF-imposed time


limits, states trying to place TANF recipients in jobs as quickly as possible often use


program funds to pay for transportation, child care, and removing other barriers to


workforce participation.


Other sources of funding may include the following: Vocational rehabilitation grants;


APRIL (has provided demonstration project funding for transportation projects in


past); the Veterans Administration; the U.S. Department of Agriculture (agency with


primary responsibility for rural economic and community development); HHS (funds a


variety of human services transportation through the AOA, Head Start, Medicaid, and


other programs); the Administration for Native Americans (another HHS agency with a


limited amount of funding available for American Indian social and economic


development activities, which can include transportation); and DOT (Shawn, 2002).


5. Who provides assistance with compliance? 

When service obligations provided for by the legislation of the Federal Government 

are not met, certain departments field these concerns. Access to transportation 

services for individuals with disabilities has been established as a requirement 

under ADA as well as other legislation detailed above. The following contact points 

should be used when initial attempts to resolve a concern at the time and place of 

the experience are not successful. 

128

The Access Board 

1331 F Street NW, Suite 1000


Washington, DC 20004-1111


Phone: (202) 272-5434; (800) 872-2253


TTY/TDD: (202) 272-5449; (800) 993-2822


Fax: (202) 272-5447


E-mail: info@access-board.gov


Web site: www.access-board.gov


The Access Board is an independent federal agency devoted to clarifying standards


and requirements to provide accessibility for people with disabilities. It operates with


about 30 staff and a governing board of representatives from federal departments and


public members appointed by the President. The Board has three key responsibilities:


developing and maintaining accessibility requirements for the built environment, transit


vehicles, telecommunications equipment, and electronic and information technology;


providing technical assistance and training on these guidelines and standards; and


enforcing accessibility standards for federally funded facilities.


6. What legislation on the horizon could impact transportation service 

funding? How do you keep informed about the impact of pending 

legislation on transportation in tribal communities? 

Developing relationships with grant program administrators and working closely with 

state agencies and transportation organizations will go far in keeping you informed 

about legislation that may impact your transportation program. Because many 

applications are competitive and must be reapplied for annually, continuing to 

develop and evaluate your program, being responsive to your community’s needs, 

and maintaining open communication lines with your grant administrators are all the 

more important. Maintaining a diverse funding portfolio will also help you to weather 

any unforeseen budget cutbacks. 

By advocating at the state and federal levels through participation in boards, 

councils, associations, and related transportation organizations, you can also ensure 

that the needs of your community are understood by those who work to shape 

legislation and develop grant programs in the first place. Each year, there are 

opportunities to impact legislation and work for change. Sen. Max Baucus (D-Mont.) 

129

and several of his colleagues recently introduced a bill entitled the Maximum 

Economic Growth for America through Rural, Elderly and Disabled Transit Investment 

Act (MEGA RED Act). This bill seeks to improve transit service in rural areas, 

including for the elderly and persons with disabilities. This bill also has provisions 

that would positively impact tribes operating transportation systems on tribal lands. 

130

References 

Alflen, Larry. (September 24, 2002). Telephone interview by Martina Whelshula. 

American Indian Disability Technical Assistance Center (AIDTAC). (2002). AIDTAC 

Resource Book. Montana: The University of Montana, Rural Institute on 

Disabilities. 

American Indian Disability Technical Assistance Center (AIDTAC). (2001). A Short 

Guide to Developing Disability Infrastructure on Reservations. Missoula, MT: The 

University of Montana, Rural Institute on Disabilities. 

Community Transportation Association of America, National Transit Resource Center. 

(2002). Transportation in Indian country: Getting started. Edited by Intersoft 

Corporation. Retrieved October 1, 2002, from www.ctaa.org/ntrc/ctap/pubs/ 

tribe.asp. 

Gonzales, Linda, Tom Seekins, and Devva Kasnitz. (1999). Taking on rural 

transportation. Excerpt from Issue Brief in Independent Living and Disability Policy, 

1(4). World Institute on Disability. Retrieved September 25, 2002, from http:// 

april.umt.edu/Taking.htm. 

Langwell, Kathy, and Janet Sutton. (2002). People with Disabilities on Tribal Lands: 

Education, Health, Rehabilitation, and Independent Living. Washington, DC: 

National Council on Disability. 

National Transit Resource Center. (2002). Public and community transportation 

glossary. Edited by Intersoft Corporation. Retrieved September 30, 2002, from 

www.ctaa.org/ntrc/glossary.asp. 

Shawn, Kelly. American Indian Transportation: Issues and Successful Models. RTAP 

National Transit Resource Center, Technical Assistance Brief Number 14. Edited by 

Intersoft Corporation. Washington, DC: Community Transportation Association of 

America. Retrieved October 1, 2002, from www.ctaa.org/ntrc/rtap/pubs/ta/amind.asp. 

Templer, Arlene. (September 10, 2002). Telephone interview by Martina Whelshula. 

Zeilinger, Chris. (September 24, 2002). Telephone interview by Ara Walline. 

131

Key Elements

of Promising

Programs 
 By getting the word out that 

people with disabilities are not 

helpless, we can create awareness 

and improve things. 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 

KEY ELEMENTS OF 

PROMISING PROGRAMS 
Key Elements of Promising Programs 

Background 

Indian country embodies some of the most diverse cultures, communities, political 

structures, and natural environments the nation knows. Therefore, it stands to 

reason that each tribe addresses the unique circumstances of tribal members with 

disabilities in very different ways. The project task was to find those tribes in the 

nation that demonstrated leadership in creating awareness, developing programs, 

adopting tribal laws, and meeting the needs of its tribal members with disabilities. 

Leaders and advocates in the Indian country disability movement recommended 

tribes that best exemplified successful practices. Of the 16 tribes recommended, 

10 were selected for follow-up interviews. 

The interview questions addressed tribal government support through the 

development of disability laws, support services, major barriers for people with 

disabilities, access and barriers to health care, children with disabilities being 

treated differently, available employment services through the tribe, and what types 

of information or resources would be helpful to tribes. The responses by tribal 

programs were overwhelmingly positive, producing a wealth of information and 

wisdom. 

Throughout the interviews, certain themes emerged that reached across each tribe. 

These themes appeared to be the key elements of success for their programs. This 

rich information is to be shared with all tribal communities desiring to improve their 

tribal community environment for members with disabilities. The following section 

summarizes key elements for these promising practices in tribal communities. 

133

Leadership 

In the course of interviewing the tribes, it became increasingly evident that the 

program took on the qualities and characteristics of its leadership. Common 

elements shared by each program director were as follows: 

Passion 

Each of the program directors demonstrated this trait in shared thoughts and action. 

Their passion was conveyed not only through descriptions of their program and the 

services delivered, but in the difficulties many programs transcended over time. 

Perseverance 

In the face of many challenges and obstacles, the program leaders’ belief in their 

work helped individuals to keep moving and fighting for changes when the task 

seemed almost impossible. 

Vision 

Each program leader believed in the possibilities for change in their tribal 

communities and seemed to have mental pictures and plans demonstrated by the 

many unique and innovative approaches to addressing the huge gaps in services for 

tribal members with disabilities. 

Commitment 

The majority of program leaders had worked in their program for several years; they 

were determined to create change to improve the quality of life and services for tribal 

members with disabilities. 

Change Agents 

These program leaders pushed for creative and different ways of doing things that 

sometimes made them unpopular with others who favored the status quo. 

Consistency 

Program leaders who stayed with their programs for many years provided a sense of 

reliability, stability, and consistency. The element of consistency nurtured the slow 

134

process of growth and occurred in ways that build upon the many lessons learned 

through the years. 

Connection to Consumer 

These program leaders strive to know their consumers despite some complex 

circumstances and multiple variables surrounding programs. 

Agents of Hope 

Many of the conditions surrounding the whole issue of disabilities in Indian country 

are severe enough to leave consumers and advocates feeling a sense of 

hopelessness. Some program leaders have described the bleak realities of tribal 

members with disabilities. In the face of some very real and despairing conditions, 

these program leaders try to embody a positive sense of hope, inspiring consumers 

to hang in there; change is coming. 

Most program leaders will tell you that they hold only one part of the total effort 

needed to improve the quality of life for tribal members with disabilities. The leaders 

described the many people who have given so much to the success of the services. 

Humility was evident as these leaders expressed excitement in how segments of 

their tribal community fought long and hard for change that resulted in improvements. 

When they speak of success, they do not speak solely in terms of a personal 

success; rather, they speak of success in terms of a collective effort by other 

community members who have expressed their own passion in the work. 

Leadership Characteristics 

A program leader who embodies the qualities and characteristics of passion, 

perseverance, vision, commitment, change, consistency, and connection, and who is 

seen as an agent of hope, can influence the success of a program greatly. 

Responsiveness to the Needs of the Consumer 

Successful programs require staff to know their consumers well. This requires moving 

beyond the initial identification of consumer needs to the development of personal 

relationships with consumers in order to truly understand the realities experienced by 

135

tribal members with disabilities. These programs tailor their services around the 

unique needs presented in each tribal community and around each consumer. 

Innovation in Removing Barriers 

“Necessity is the mother of invention” is a phrase that exemplifies the motivation 

behind many innovative programs throughout Indian country. The personal diligence 

and leadership of individuals with disabilities and/or their family members have 

helped to reshape tribal communities and create more awareness, break down 

barriers, and push for expanded services and advocacy. Through their advocacy, 

tribal programs have realigned programs to create seamless services and more 

comprehensive support. 

Effective Collaboration 

A key factor for a successful program rests in the program’s ability to effectively 

collaborate between agencies, programs, and funding sources. Those programs 

whose staff have extensive knowledge and awareness of other programs and 

services were able to develop the most comprehensive and innovative programs. All 

10 of these tribes have demonstrated how their creative collaborations increased the 

success of their programs in serving tribal members with disabilities. 

Advocacy Strength 

Advocacy is another key program success factor. Advocacy seems to be an inherent 

process of the work in Indian country. It is a primary source of support for tribal members 

with disabilities who don’t know how to or can’t advocate for themselves. Advocacy 

comes in many forms and is multidimensional. It is evident from the many voices of 

program leaders that it is essential to successfully serve people with disabilities. 

Support from Tribal Leadership 

Every tribal program included in this report noted that tribal leader support was an 

important factor in the success of the program. However, tribal leader support looked 

very different from tribe to tribe. Although not all tribes have laws protecting the rights 

of tribal members with disabilities, some have personnel policies and procedures, 

while other programs feel supported by their tribal leadership in some way. 

136

Conclusion 

Combinations of the elements identified from promising practices observed in 

existing programs seem to be aligned with comments by tribal leader Chief Joseph, 

Nez Perce: “The earth is the Mother of all people, and all people should have equal 

rights on it.” In the development of local policies, processes, and programming to 

serve and protect the rights of tribal members with disabilities, the power of 

collaboration and overarching awareness of local tribal culture must be considered. 

Unless programs are culturally responsive, consumers will not patronize the services 

offered. Knowing the consumer through meaningful inclusion in planning and hiring 

and risking innovation in an attempt to design a program that fits consumer needs 

rather than making the consumer fit the program design are also critical for success. 

Combined support from tribal leadership, committed and culturally responsive 

program staff, and positive results for people with disabilities in Indian country can 

enhance their empowerment. 

137

Advocating Chang
David Mile

We need to learn about the 

‘forgotten people,’ respect them 

they can learn to live with whatev

their challenge is without going in

denial and grief. 

ADVOCATING CHANGE 
Advocating Change 

Self-Advocacy 

Considering the number of programs 

and ser vices a person with disabilities 

interacts with on a day-to-day basis, 

success depends a great deal on your 

resolve. The maze of programs and 

ser vices can and will be frustrating to 

understand and deal with. For the most 

part, it may not be possible to have an 

advocate present who understands your 

overall journey. In many cases, it may 

be just you. Self-advocacy can be a truly 

liberating and empowering experience 

while you seek to improve your current 

situation or your overall quality of life. 

All birds, even those of the same 

species, are not alike, and it is the 

same with animals and with human 

beings. The reason WakanTanka 

does not make two birds, or 

animals, or human beings exactly 

alike is because each is placed 

here by WakanTanka to be an 

independent individuality and to rely 

upon itself. 

—Shooter, Teton Sioux 

StoneE Producktions, 1996 

Self-advocacy among Native Americans with disabilities brings its own unique 

challenges in many ways. Native Americans have struggled with oppression for 

several hundred years. It is a constant struggle to have our voices heard and to fight 

for our own self-determination as a people. The journey for Native Americans with 

disabilities is the same fight against oppression and in some cases our own family or 

tribal community may be the oppressor. Lack of awareness and understanding about 

disabilities creates an environment that feels oppressive and leaves many feeling 

frustrated and powerless. 

The self-advocacy movement is a civil rights movement in many ways, as well. It is 

about improving the civil rights of people who have been and still are oppressed, 

139€
Self-Advocacy...What Is It? 

• A civil rights movement for ever y person to have 

control over one’s own life so people with disabilities 

are treated the same as ever yone else. 

• Beliefs and values 

— Being a person first 

— Being able to make our own decisions 

— Believing in my value as a person 

— Having other people believe in you as a person 

—Fletcher and Keilson, 2002 

ignored, devalued, and segregated because of how they are viewed as people who 

have or are labeled as having developmental disabilities (Shoultz, 2002). 

Giving Voice to Your Life Choices 

Self-advocacy is a life-long 

personal pursuit of control over 

one’s own circumstances. It is the 

act of advocating for what one 

wants, for how one desires to live, 

for how one wants to be treated, 

within one’s family, community 

and services, and it does not end 

with one concession or victor y. 

—Bonnie Shoultz, 2002 

If you find talking to others difficult because it is 

uncomfortable or you are extremely shy, this 

doesn’t have to keep you from communicating 

what you want and need in your life. If you find it 

hard to communicate with people or ask for what 

you want and need, find a friend or family 

member who can speak for you. Many times 

another person with a disability makes the best 

spokesperson in these situations simply because 

that person understands the situation from 

personal experience. Typically, there is someone 

in each tribal community who would be more than willing to assist in any way possible. 

140€
Speaking Up About Services 

“Now, self-determination means running my€

own life and directing my personal care€

assistants on how best to assist me in my€

personal care. Now, people treat me like a€

human being who knows what I want and who€

needs support to live my life. They ask me what€

I want and how I want it done. They also ask€

me: what is the easiest way to get things done,€

so that I feel comfortable and they feel€

comfortable as well. So self-determination€

doesn’t mean you have to do ever ything yourself, but it does mean you have to be in€

charge of your life to the fullest extent that you possibly can be” (Kennedy, 2002, p. 1).€

Self-advocacy means people with 

disabilities speaking up and 

speaking out for their rights. For 

people who can’t speak, it may 

mean having someone interpret 

what you want to say. 

—Michael Kennedy and 

Patricia Killius, 2002 

Tribes are ver y different in their awareness and attitudes about tribal members with€

disabilities. They are extremely diverse in their capacity and willingness to address€

the needs of tribal members with disabilities. It becomes increasingly important that€

consumers speak up about the ser vices€

offered by tribes, tribal programs, and county,€

state, and federal agencies.€

Jo White, of the Pine Ridge Quad Squad,€

teaches self-advocacy by telling consumers€

that if there are no access ramps into a€

building for you, and they don’t provide access€

after you have requested them, then you plant€

yourself on the steps of that building and€

make them carr y you into the building. You€

keep doing that, she says, and they will finally€

get tired of carr ying you and build you a ramp.€

Use whatever means you have to speak up€

and state what you need and how you would€

like it done. There may be times when you€

The system...needs to support 

the idea of teamwork and power 

sharing between people and their 

helpers. The system is there to 

assist, offering guidance but not 

threatening us if we don’t take 

the advice. The system also 

needs to support the idea that 

people should be able to live how 

they want to, even if the 

professionals would live 

differently. This always means 

listening to us, really listening, 

and giving us feedback that is 

honest but respectful.. 

—Michael Kennedy and 

Bonnie Shoultz, 2002 

141€
have to dig for ser vices. Some tribes report that there are times when disability 

agencies don’t tell you about all of the available resources and ser vices; you may 

have to dig for the information and explore all of the avenues. You may be fortunate 

enough to have a tribal ser vice provider who knows “the ropes” and can help you get 

the best ser vice possible, or you may have a program staff that is new and knows 

nothing. Your own best advocate is yourself. 

The City of San Antonio Disability Access Office has developed the following SelfAdvocacy Cycle guide with information provided by the National Information Center 

for Handicapped Children and Youth to help you advocate for yourself. The four steps 

are targeting, preparing, influencing, and following through. 

Step 1: Targeting 

Identify individual, family, or group needs and the organizations or resources 

responsible for addressing these needs: 

• Medical 

• Therapeutic 

• Family support 

• Legal 

• Financial 

• Housing 

• Recreation 

• Barrier removal 

• Problem diagnosis/assessment 

• Education 

• Independent living skills 

• Social/emotional development 

142€
Step 2: Preparing 

Prepare to participate in decisionmaking sessions on how best to meet your needs. 

Have a friend or advocate come with you to decisionmaking meetings. Do your 

homework: Know the organization’s personnel (names, addresses, phone numbers), 

so you can contact them for help and information. Know your rights and the ser vices 

you are eligible to receive. Be positive; leave feelings of resentment at home. 

Step 3: Influencing 

Influence decisionmakers to adopt your 

desired approach for addressing your needs. 

When using the telephone or writing letters, 

•Check with whom you are talking in 

order to avoid repeating your stor y. 

• Identify yourself and specifically state the purpose of your call. 

You have control. Just ask for what 

you need. 

—Jo White, Pine Ridge Quad Squad 

•Always be prepared to describe the essential aspects of needs that are 

relevant to the agency that you are calling. 

• Have records available and encourage immediate action. 

•Know exactly the purpose of your call and stay on that purpose until it has been 

achieved. If you’re unsatisfied, ask to speak to someone else. 

• Communicate a sense of teamwork: “How can we make this happen?” 

• Know exactly what, when, and where your next steps are before hanging up. 

Step 4: Following Through 

Check to be certain that the agreements made are carried out. 

Keep good records: It is up to you (the self-advocate) to check to see if the ser vices 

that you worked hard to get are being delivered. There is no end to the process of 

self-advocacy. Self-advocates must reassess their needs and the ser vices available 

to meet their needs on an ongoing basis. Each stage in a person’s or group’s 

development potentially means new needs, new decisionmakers to influence, and 

143€
new follow-up visits. Being a truly effective self-advocate is not an easy task! It 

demands tenacity and perseverance. 

What Would You Do as a Self-Advocate? 

• Know your rights 

• Speak up for yourself 

• Express your feelings 

• Solve problems, get things done 

• Make choices and make your own decisions 

• Decide how suppor t is given 

• Have influence over your own life 

• Help each other to express your feelings and thoughts 

• Take control over your life 

• Take par t in things that af fect your own life 

• Allow yourself to make your own mistakes 

• Form groups 

—Fletcher and Keilson, 2002 

Guidelines for Writing a Resolution 

While advocating for changes affecting people with disabilities within a tribal system, 

it is sometimes necessar y to begin with the development of tribal policy. One of the 

most effective ways to initiate change is through the presentation of resolutions. 

Each tribe and Indian organization has its own procedures set out for the creation 

and approval of resolutions. This section provides general guidelines on how to 

develop and present a resolution along with sample resolutions approved by the 

National Congress of American Indians. 

144€
Purpose of Submitting a Resolution 

The purpose of writing a resolution is to provide a formal procedure whereby the 

members of the tribal governing body can give input concerning policy and activities. 

Tribal leaders and community advocates can set policy and direction through 

committees by way of resolutions during tribal governing procedures. A resolution is 

a means of expressing an opinion on a pressing matter or of recommending that 

some action be taken by the tribal governing body or some other agency. 

Useful types of resolutions include the following: 

•A request that the tribal governing body develop protections and 

accommodations for tribal members with disabilities 

•A request that the tribal governing body establish a new program or activity or 

reconsider a current tribal program or activity 

• A request that the tribal governing body change its operating procedures 

When drafting and sponsoring a resolution, keep in mind that the wording must be 

carefully crafted and accurately defined. The resolution should be clear, concise, 

and specific. Sponsors should expect to introduce resolutions from the floor and to 

make impromptu defenses of the document throughout the session. Review existing 

tribal resolutions and follow that format. 

Resolution Format 

Resolutions may originate from 

• Tribal government leaders 

• Community advocates 

• Organization members 

The resolution format needs to include the resolution number, title, date, a 

“whereas” section that clearly defines the problem and possible resolution, 

certification by the tribe or organization leaders, a “refer to” designation, and the 

contact information for the person filing the resolution form. These components are 

145€
detailed in the descriptions that follow. 

• Resolution Number: Supplied by the organization’s secretar y. 

• Title: Should reflect the action for which the resolution calls. 

• Date: Date submitted. 

•Whereas: Many times a tribal governing body will have a template for the 

introductor y “Whereas.” The subsequent “Whereas” statements should be 

written clearly to define the problem and state that a solution is possible. 

Please remember that the “Whereas” parts are not voted on and should be 

limited to three or four statements in order to ensure that the focus remains on 

the resolved portion of the resolution. 

•Resolved: Each “resolved” requests action by the tribal/organization governing 

body. 

•Certification: This section certifies that the resolution was formally adopted by 

the tribal/organization governing body. 

•Refer to: Each tribal/organization governing body has its own referral process. 

Check with tribal government/organization leaders or the designated secretar y. 

•Author/Contact Person: The individual who drafted the resolution and who can 

be contacted for clarification. 

Sample Resolutions 

Following are examples of existing resolutions to demonstrate how these 

components appear in their final form. 

146€
The National Congress of American Indians 

Resolution # PSC-99-006 

Title: The Establishment of a National American Indian 

Disability Technical Assistance Center 

WHEREAS, we, the members of the National Congress of American Indians of the 

United States, invoking the divine blessing of the Creator upon our efforts and 

purposes, in order to preser ve for ourselves and our descendants the inherent 

sovereign rights of our Indian nations, rights secured under Indian treaties and 

agreements with the United States, and all other rights and benefits to which we are 

entitled under the laws and Constitution of the United States, to enlighten the public 

toward a better understanding of the Indian people, to preser ve Indian cultural 

values, and to otherwise promote the welfare of the Indian people, do hereby 

establish and submit the following resolution; and 

WHEREAS, the National Congress of American Indians (NCAI) is the oldest and 

largest national organization established in 1944 and composed of representatives 

of and advocates for national, regional, and local tribal concerns; and 

WHEREAS, the health, safety, welfare, education, economic and employment 

opportunity, and preser vation of cultural and natural resources are primar y goals and 

objectives of NCAI; and 

WHEREAS, one in three American Indians, or 759,000 tribal members, report having 

a disability; and 

WHEREAS, tribal people and tribal people with disabilities are interested in 

improving ser vices, outreach, and training but do not have access to disabilityrelated technical expertise, equity in funding, and disability Civil Rights laws; and 

WHEREAS, NCAI has provided support and acknowledgment of the need for an 

American Indian Disability Technical Assistance Center that is respectful of tribal 

147€
sovereignty and cultural diversity to ser ve American Indians and Alaska Natives€

through their Green Bay Resolution GRB-98-042; and€

WHEREAS, the following entities have begun to meet to discuss the establishment€

of a National American Indian Disability Technical Assistance Center (see attached):€

U.S. Senate Committee on Indian Affairs; National Council on Disability (NCD); Office€

of Public Liaison—The White House; HHS; Department of Education’s Office of€

Special Education Programs (OSE), Office of Special Education & Rehabilitation€

Ser vices (OSERS), NIDRR, and the Rehabilitative Ser vices Administration (RSA); DOJ,€

Office of Tribal Justice; DOJ, Civil Rights Division; Office of Intergovernmental Affairs;€

National Congress of American Indians; Department of Labor; and American Indian€

Rehabilitation Rights Organization of Warriors (AIRROW).€

NOW THEREFORE BE IT RESOLVED, that NCAI does hereby work through the Sub-€

Committee on Disability Issues and strongly recommends the participation of the€

following entities: Indian Health Ser vices; Bureau of Indian Affairs; HUD—Office of€

Native American Programs; National American Indian Housing Council (NAIHC);€

National Council on Independent Living (NCIL); Administration for Native Americans€

(ANA); and Administration on Developmental Disabilities (ADD); and€

BE IT FURTHER RESOLVED, that NCAI will address Congress and the Administration€

to support the establishment of the AIDTAC through existing agency coordination and€

collaboration in seeking appropriations; and€

BE IT FINALLY RESOLVED, that NCAI does hereby monitor the progress of the€

establishment of a National American Indian Disability Technical Assistance Center to€

ser ve the needs of all American Indian people with disabilities and their elders.€

CERTIFICATION 

The foregoing resolution was adopted at the 1999 Annual Session of the National€

Congress of American Indians, held at the Palm Springs Convention Center, in Palm€

Springs, California, on October 3-8, 1999, with a quorum present.€

_______________________________€

Susan Masten, President €

ATTEST: Juana Majel, Recording Secretary€

148€
The National Congress of American Indians 

Resolution # PSC-99-005 

Title: Creating an American Indian Disability Liaison Office 

To Better Coordinate National Disability Policy 

WHEREAS, we, the members of the National Congress of American Indians of the 

United States, invoking the divine blessing of the Creator upon our efforts and 

purposes, in order to preser ve for ourselves and our descendants the inherent 

sovereign rights of our Indian nations, rights secured under Indian treaties and 

agreements with the United States, and all other rights and benefits to which we are 

entitled under the laws and Constitution of the United States, to enlighten the public 

toward a better understanding of the Indian people, to preser ve Indian cultural 

values, and to otherwise promote the welfare of the Indian people, do hereby 

establish and submit the following resolution; and 

WHEREAS, the National Congress of American Indians (NCAI) is the oldest and 

largest national organization established in 1944 and composed of representatives 

of and advocates for national, regional, and local tribal concerns; and 

WHEREAS, the health, safety, welfare, education, economic and employment 

opportunity, and preser vation of cultural and natural resources are primar y goals and 

objectives of NCAI; and 

WHEREAS, 33 percent, or one in three American Indians/Alaska Natives (759,000 

total), have reported a disability or disabling condition, which equates to the highest 

minority population in the United Sates having disabilities; and 

WHEREAS, the Indian Health Ser vices (IHS) and the Bureau of Indian Affairs (BIA) 

are the designated agencies to handle the health, education, and welfare of 

American Indians/Alaska Natives, yet neither IHS nor BIA have the awareness, 

understanding, knowledge, or technical assistance to adequately address the policy 

and implementation of ser vices and outreach on disability issues for people with 

disabilities and elders in Indian Countr y, and there are no coordinated efforts to do 

so; and 

149€
WHEREAS, the national disability community handles the national policy, ser vice, 

and outreach for the United States, yet they have not awareness, understanding, 

knowledge, or technical assistance developed to adequately address the cultural 

diversity and sovereignty for the Nations, and the national disability community is to 

include the American Indian population in their ser vices and outreach, yet have not 

adequately done so, and there are no coordinated efforts to do so. 

NOW THEREFORE BE IT RESOLVED, that NCAI does hereby acknowledge the barriers 

created when neither IHS, BIA, or the national disability community have coordinated 

efforts to address national disability policy in Indian countr y; and 

BE IT FURTHER RESOLVED, that NCAI does hereby acknowledge and recommend the 

need for the establishment of an American Indian Disability Liaison Office to better 

coordinate national policy for addressing the needs of American Indians/Alaska 

Natives with disabilities and their elders; and 

BE IT FINALLY RESOLVED, that NCAI does hereby recommend and monitor the 

progress of establishing an American Indian Disability Liaison Office within the Office 

of Public Liaison—The White House or in the Office of Intergovernmental Affairs. 

CERTIFICATION 

The foregoing resolution was adopted at the 1999 Annual Session of the National 

Congress of American Indians, held at the Palm Springs Convention Center, in Palm 

Springs, California, on October 3-8, 1999, with a quorum present. 

_______________________________ 

Susan Masten, President 

ATTEST: Juana Majel, Recording Secretary 

Adopted by the General Assembly during the 1999 Annual Session of the National 

Congress of American Indians, held at the Palm Springs Convention Center, in Palm 

Springs, California, on October 3-8, 1999. 

150€
The National Congress of American Indians 

Resolution # JUN-00-018 

Title: Continuation Of Disability Projects And Allocated Funding Within 

The Current And Next Administration For Indian Country 

WHEREAS, we, the members of the National Congress of American Indians of the 

United States, invoking the divine blessing of the Creator upon our efforts and 

purposes, in order to preser ve for ourselves and our descendants the inherent 

sovereign rights of our Indian nations, rights secured under Indian treaties and 

agreements with the United States, and all other rights and benefits to which we are 

entitled under the laws and Constitution of the United States, to enlighten the public 

toward a better understanding of the Indian people, to preser ve Indian cultural 

values, and to otherwise promote the welfare of the Indian people, do hereby 

establish and submit the following resolution; and 

WHEREAS, the National Congress of American Indians (NCAI) is the oldest and 

largest national organization established in 1944 and composed of representatives 

of and advocates for national, regional, and local tribal concerns; and 

WHEREAS, the health, safety, welfare, education, economic and employment 

opportunity, and preser vation of cultural and natural resources are primar y goals and 

objectives of NCAI; and, 

WHEREAS, projects and allocated funding have been created within the present 

Administration; and, 

WHEREAS, the current Administration and its federal agencies are beginning to 

address the issues of disability in Indian countr y through work groups and specific 

disability entities under the Department of Health and Human Ser vices; and, 

WHEREAS, the incoming Administration’s practice is to change priorities; and, 

151€
NOW THEREFORE BE IT RESOLVED, that NCAI recommends continued allocation for 

disability projects in Indian countr y that would enhance the tribes’ ability to ser ve 

Native American people with disabilities; and, 

BE IT FINALLY RESOLVED, NCAI does hereby urge federal agencies to continue to 

work in collaboration with each other and the tribes to address the immense 

disability issues facing Indian countr y. 

CERTIFICATION 

The foregoing resolution was adopted at the 2000 Mid-Year Session of the National 

Congress of American Indians, held at the Centennial Hall in Juneau, Alaska, on June 

25-28, 2000, with a quorum present. 

_____________________________ 

Susan Masten, President 

ATTEST: 

Juana Majel, Recording Secretary 

Adopted by the General Assembly during the 2000 Mid-Year Session of the National 

Congress of American Indians, held at the Centennial Hall in Juneau, Alaska, on June 

25-28, 2000. 

152€
Resolution No. ____________ 

SAMPLE RESOLUTION


OF THE GOVERNING BODY OF


_______________________________________ 

_______________________________________ 

A RESOLUTION TO SUPPORT THE ESTABLISHMENT OF NEEDED ACCESSIBILITY TO 

NATIVE AMERICANS WITH DISABILITIES 

BE IT RESOLVED BY THE COUNCIL OF THE ___________________________ THAT 

THERE IS A NEED TO PROVIDE ACCESSIBLITY TO NATIVE AMERICANS WITH 

DISABILITIES: 

WHEREAS, the _____________________ respect the lives of all of our people and 

recognize that our people are the most important tribal resource; and 

WHEREAS, the _____________________, utilizing the authority vested in them 

pursuant to the Tribal Constitution, has authority to protect the health, security, and 

general welfare of the _______________________; and 

WHEREAS, the ______________________ recognize the need for tribal facilities, 

including recreational areas, pow-wow grounds, and other tribal areas that are 

operated and maintained by the _____________________ to be in compliance with 

the spirit of the American with Disabilities Act of 1990, Public Law 101-336 (104 

Stat. 327) (“ADA”); and 

WHEREAS, the _______________________recognize that no individual shall be 

discriminated against on the basis of disability in the full and equal enjoyment of the 

goods, ser vices, facilities, privileges, advantages, and accommodations of any place 

of tribal accommodation; and 

WHEREAS, the _______________________further recognize that the objective of ADA 

is to provide mobility for Americans with disabilities and to enable them to lead 

normal and productive lives; and 

153€
WHEREAS, the ______________________are aware that an estimated 14 percent of 

the Native American population have disabilities and are denied social and 

economic enjoyment taken for granted by others who have no disabilities, e.g., 

employment and recreational activities, and 

WHEREAS, the ______________________ are also aware that respondents to a recent 

sur vey of the American Indian Disability Legislation indicated that approximately 67 

percent of the public buildings on the various Indian reser vations are accessible, 

leaving almost one-fourth of the public buildings inaccessible; and 

WHEREAS, the ______________________ have identified a need to develop a tribal 

policy implementing ADA in our present facilities, as well as any future (new or 

reconstructed) facilities; and 

NOW, THEREFORE, BE IT RESOLVED, that the ____________________recognize that 

our people with disabilities are entitled to accessibility to our tribal facilities, 

recreational sites, pow-wow grounds, and other areas. 

BE IT FURTHER RESOLVED, that the ___________________ are committed to 

developing a tribal policy to address and comply with ADA. 

AND BE IT FURTHER RESOLVED, that there shall be an established committee to 

assist in the review process addressing the application of appropriate ADA 

accessibility guidelines. 

AND BE IT FURTHER RESOLVED, that the ____________________________shall direct 

the Tribal Division of _____________ and _______________, and any other tribal 

department whose involvement will be necessar y to address and meet the 

guidelines of ADA and to participate in said committee to ensure compliance. 

CERTIFICATION 

The foregoing resolution was adopted by the Tribal Council on the ____ day of _____, 

____, with a vote of ____ for, ____opposed, and ____ not voting, pursuant to authority 

vested in________________________ by ___________ as amended. 

___________________________________________€

Chair, Tribal Council 

154 
ATTEST:


___________________________________________ 

Executive Secretary 

* Thanks to the Confederated Salish and Kootenai Tribes for use of their tribal 

resolution to improve the overall quality of life for tribal members with disabilities. 

155€
References 

Fletcher, Trudy, and Keilson, Jeff, KY-SPIN, Inc. (2002). Self-advocacy. Retrieved 

October 7, 2002, from PNP Associates and Kentucky Council on Developmental 

Disability, www.kyspin.com/self_advocacy.htm. 

Kennedy, Michael, The Center on Human Policy. (2002). Self-determination. 

Retrieved from September 27, 2002, from http://soeWeb.syr.edu/thechp/ 

mikeself.htm. 

Kennedy, Michael, and Patricia Killius, The Center on Human Policy. (2002). SelfAdvocacy: Speaking for Yourself. Recorded and edited by Deborah Olson, 1986. 

Retrieved September 27, 2002, from http://soeWeb.syr.edu/thechp/ 

saspeak.htm. 

Kennedy, Michael, and Bonnie Shoultz, The Center on Human Policy. Thoughts about 

self-advocacy. Retrieved September 27, 2002, from http://soeWeb.syr.edu/ 

thechp/thoughts.htm. 

Shoultz, Bonnie, The Center on Human Policy. (2002). More thoughts on selfadvocacy: the movement, the group, and the individual. Retrieved September 27, 

2002, from http://soeWeb.syr.edu/thechp/moretho.htm. 

StoneE Producktions. (1996). Shooter, Teton Sioux. In Quotes From Our Native Past. 

Retrieved November 4, 2002, from www.ilhawaii.net/~stony/quotes.html. 

White, Jo. (September 9, 2002). Telephone inter view by Martina Whelshula. 

156€
Federal 

Disability

Laws & Tribes 
I have a vision for the toolkit t

educate and inform policymakers

tribal council members, and gener

society about American Indians an

Alaska Natives who are living with

the highest rate of disabilities. It i

important to provide this informatio

and research to people nationwid

for them to really understand how

a disability impacts our lives. To m

that is the real important thing.F

Julie Clay 
Federal Disability Law and Tribes 

Background 

Individuals with disabilities living on tribal lands face a complex legal environment. 

Because Indian tribes enjoy the “inherent powers of a limited sovereignty which has 

never been extinguished,” tribal lands are subject to the jurisdiction of tribal 

governments, long recognized as distinct political entities. This sovereignty may also 

affect the application of federal regulations to tribes. Federally recognized Indian 

tribes, as sovereign self-governing nations, are protected from private lawsuits under 

the doctrine of “sovereign immunity.” Tribes can be sued only if they agree to waive 

their sovereign immunity for that purpose. 

Individuals with disabilities who are concerned about their rights and protections 

guaranteed under the Rehabilitation Act of 1973 (29 U.S.C. §§ 701 et seq.), or the 

Americans with Disabilities Act of 1992 (42 U.S.C. §§ 12101 et seq.), may face 

unique barriers when seeking enforcement by a tribal government. 

Understanding Government-to-Government Relationships 

Because of tribal sovereignty, a unique relationship exists between tribal governments 

and the Federal Government. This “government-to-government” relationship requires 

the Federal Government to recognize the tribal right to self-governance. In addition, the 

Federal Government must uphold its trust obligations and respect treaty rights. 

To further this government-to-government relationship, the Federal Government 

announced a policy of consultation with tribal governments in Executive Order #13175 

(November 6, 2000). The policy requires meaningful consultation with tribal officials on 

any regulatory policies that have tribal implications. Federal agencies are required to 

consult with tribes during the development of new policies. When possible, federal 

157

agencies must grant tribes the maximum administrative discretion possible. Agencies 

are required to encourage tribes to formulate and implement their own policies, 

establish standards, and consult with tribes when developing federal standards. 

The Americans with Disabilities Act (ADA) and Tribes 

Title I: Title I of ADA requires that employers with 15 or more employees provide 

qualified individuals with a disability with an equal opportunity to benefit from the full 

range of employment benefits available to others. Title I of ADA restricts 

discrimination in hiring, promotions, pay, and other privileges of employment. 

Employers must make reasonable accommodation for the known physical or mental 

limitations of otherwise qualified individuals with disabilities, unless it results in an 

undue hardship. However, Title I categorically excludes tribes as employers. 

Title II: On June 22, 1999, the Supreme Court decided a landmark ruling interpreting 

Title II of the Americans with Disabilities Act. This decision, in Olmstead v. L.C. (527 

U.S. 581 (1999)), found that Title II of ADA requires states to provide communitybased treatment for persons with mental disabilities when the state’s treatment 

professionals determine that such placement is appropriate, the affected persons do 

not oppose such treatment, and the placement can be reasonably accommodated. 

When considering whether the placement can be reasonably accommodated, it is 

necessary to consider the resources available to the state and the needs of others 

with mental disabilities. The practical application of this ruling is that states must 

help to provide the least restrictive level of care for people with disabilities, moving 

away from institutionalization and toward home- and community-based care. This 

could present new opportunities for tribal governments to develop home- and 

community-based services that are reimbursed by Medicaid or other sources. 

Title III: In passing Title III of ADA, Congress announced the purpose as providing “a 

clear and comprehensive national mandate for the elimination of discrimination 

against individuals with disabilities.” Title III of ADA attempts to accomplish this goal 

by prohibiting discrimination in public accommodations. Based on Congress’ intent to 

end discrimination and the statute’s broad language, federal courts have ruled that 

Title III of ADA applies to tribes. 

158

However, a federal court finding that a statute is applicable to a tribe is not the same as 

finding a waiver of tribal sovereign immunity. While Title III of ADA may apply to tribes, 

sovereign immunity prohibits private suits for enforcement against tribes in federal 

courts. In such cases, individuals with disabilities may have a right without a remedy. 

Although Title III of ADA does provide for suits brought for enforcement by DOJ, no 

such action has been brought. 

The Rehabilitation Act and Tribes 

The Rehabilitation Act prohibits discrimination based on disability in programs 

conducted by federal agencies, including programs receiving federal funds and in 

federal employment. In determining employment discrimination, the Rehabilitation 

Act uses the same standards as Title I of ADA. 

Section 121 of the Rehabilitation Act authorizes the Rehabilitation Services 

Administration to make grants to tribes for the purpose of VR services. Tribes 

accepting these grants, and generally other federal funds, agree to comply with 

federal law. However, this agreement does not amount to a waiver of sovereign 

immunity, which protects tribes from suit in federal court. Again, individuals with 

disabilities may have a right without a remedy. 

The Individuals with Disabilities Education Act (IDEA) and Tribes 

The purpose of IDEA is to ensure that every child has available to him/her a free, 

appropriate public education that meets individual needs. IDEA intends to improve 

the educational results of children with disabilities. To reach this goal, IDEA requires 

first that a child suspected to have a disability be evaluated by the school. Second, 

IDEA requires an Individualized Education Program (IEP) be developed by a specific 

team of people including, among others, the parents and teachers, for each eligible 

child with a disability. The IEP must be based upon individual needs. 

IDEA provides that the Secretary of the Interior receive funds from the Secretary of 

Education to educate children with disabilities aged 5 to 21 on reservations in 

elementary and secondary schools operated and funded by the Bureau of Indian 

159

Affairs (BIA). IDEA also provides an administrative enforcement process that BIAfunded schools are subject to, based upon the school’s status as a local 

educational agency for funding purposes. Tribally operated schools that accept IDEA 

funds from BIA must also abide by the provisions of the law. 

If IDEA requirements are not met, IDEA provides for dispute resolution mechanisms. For BIAfunded schools, BIA acts as a state with responsibility for ensuring that IDEA requirements 

are met and for operating mechanisms for resolving disputes. These mechanisms include 

(1) mediation; (2) formal complaint process; and (3) due process or litigation. 

Advocacy 

The outcomes above may suggest that tribal governments are failing to meet their 

responsibility to individuals with disabilities; the reality is that current funds may not 

be significant enough to improve accessibility on tribal lands. Although entangled in 

this complex legal environment, individuals with disabilities living on tribal lands 

have potential options. A tribe could waive its sovereign immunity to allow suits 

brought under ADA, tribal courts could enforce federal disability legislation, or tribal 

governments could pass ordinances providing protections similar to those in federal 

statutes, such as ADA or Rehabilitation Act. 

The political power of people with disabilities, their families, and advocates could 

help to move tribal governments toward adopting such ordinances. However, model 

legislation may be inappropriate because tribes vastly differ from one another. The 

legislation addressing disabilities may be more effective if specifically developed for 

particular tribes. Tribes that have worked on such ordinances include the Salish 

Kootenai, the Navajo, and the St. Regis Mohawk. 

Improvements in accessibility will incur costs. The Federal Government, in fulfilling its 

trust obligations, can and should provide funding to meet these requirements. A 

tribe’s immunity from suit in federal court should not result in a tribe’s conclusion 

that ADA is inapplicable. In drafting ADA, Congress makes it clear that the Act is a 

“national mandate” to end discrimination. Furthermore, the Act, other comparable 

legislation, and the legislative histories suggest that Indian tribes should be the 

recipient of grants to ensure compliance. 

160

References 

Florida Paraplegic Association, Inc. v. Miccosukee Tribe of Indians of Florida, 166


F.3d 1126 (11th Cir. 1999).


Sanderlin v. Seminole Tribe, 243 F.3d 1282 (11th Cir. 2001). 

United States v. Wheeler, 435 U.S. 313, 322 (1978).


Worcester v. Georgia, 31 U.S. 515, 559 (1832).


161

National Initiatives

Federal Agencies, & National 

Organizations 
National Initiatives, Federal Agencies,


and National Organizations


Background 

Federal agencies and national organizations play important roles in increasing 

accessibility for individuals with disabilities. Both were integral in passing the 

Americans with Disabilities Act (ADA) in 1990, and both continue working today to 

improve the opportunities for individuals with disabilities in education, 

transportation, and participation in their communities. 

Initiatives 

Even with all the success in the 12 years since the passage of ADA, the Federal 

Government is still working to improve access for individuals with disabilities. The 

descriptions of the initiative that follows demonstrate the current administration’s 

position on improving services for individuals with disabilities. 

New Freedom Initiative 

Announced by President Bush on February 1, 2001, the New Freedom Initiative is an 

effort to remove barriers preventing people with disabilities from accessing new 

technologies, education, and full integration into American life. The Initiative 

announces an administration effort to increase funding for the Individuals with 

Education Act, integrating Americans with disabilities into the workforce and 

promoting full access to community life. (Visit www.whitehouse.gov/news/ 

freedominitiative/freedominitiative.html to view the legislation.) 

163€
To further the goals of the New Freedom Initiative, President Bush announced 

Executive Order 13217. This Order, issued June 18, 2001, directs the Federal 

Government to assist state governments in implementing the Supreme Court’s 

decision in Olmstead v. L.C. The Order commits the attorney general, secretaries of 

Health and Human Services, Education, Labor, and Housing and Urban 

Development, as well as the Commissioner of Social Security, to improve the 

availability of community-based services for people with disabilities. 

Federal Disability Agencies 

Congress has enacted disability legislation with the role of program administration 

and enforcement existing within many diverse federal agencies. The needs of 

individuals with disabilities cut across all aspects of life; the number and type of 

agencies providing services for individuals with disabilities reflect this wide 

spectrum. The “Guide to Disability Rights Laws,” published by the Department of 

Justice (DOJ), provides an excellent introduction to the services and agencies that 

are outlined in the following pages (DOJ, 2001). 

Social Security 

The Social Security Administration has two types of programs that can benefit people 

with disabilities: 

•Social Security Disability Insurance: This program pays benefits to you and/or 

certain members of your family, if you become disabled and you are insured, 

meaning that you worked long enough and paid into the Social Security tax system. 

To qualify for benefits you must first have worked in jobs covered by Social Security. 

Then you must have a medical condition that meets Social Security’s definition of 

disability. Generally, this program will pay cash benefits to a person who has not 

been able to work for a year or more because of a disability. 

•Supplemental Security Income (SSI): This program will pay benefits based upon 

financial need to people with disabilities. SSI was established to assist people 

who are aged, blind, or have a disability and have little or no financial income. It 

provides cash payments to meet basic needs such as food, clothing, and shelter. 

If you get SSI, you will usually also get Food Stamps and Medicaid assistance. 

164€
How does Social Security define a “disability”? The Social Security Administration 

uses the same basic definition for both Social Security Disability Insurance and SSI 

programs. A disability means that you have a physical or mental problem that keeps 

you from working and is expected to last at least a year or to result in death. 

How do I apply for SSI? To apply for SSI you can contact your local Social Security 

office or contact the main office at 1-800-772-1213 to make an appointment with a 

Social Security representative. If you have an advocate or family member who will 

make these appointments for you, be sure to give that person written permission to 

speak on your behalf. 

Other things to bring to your SSI appointment: 

• Your Social Security card or a record of your Social Security number 

• Your birth certificate or other proof of your age 

•Information about the home you live in, such as your mortgage or lease and 

landlord’s name 

•Payroll slips, bank books, insurance policies, burial fund records, and other 

information about your income and the things that you own (remember that 

American Indians and Alaska Natives can exempt up to $2,000 in assets from 

trust income related to their status as tribal members) 

•If you’re signing up for disability—the names, addresses, and telephone 

numbers of doctors, hospitals, and clinics that have seen you 

• Proof of U.S. citizenship 

•Checkbook or other banking or credit union information with your account 

number so that you can have your benefits automatically deposited into your 

account once approved 

How do I apply for Social Security Disability Insurance benefits? It will take longer to 

apply for Social Security Disability Insurance benefits than for other programs under 

Social Security, usually 60 to 90 days. You should make an appointment with your local 

Social Security office to get your application moving. This office will send your 

application to the Disability Determination Services office located in your state to 

determine whether you meet the definition of a person with a disability under the law. 

165€
You should bring the following information with you to your appointment: 

• Social Security number and proof of age for each person applying for payments 

•Names, addresses, and phone numbers of doctors, hospitals, clinics, and 

institutions that treated you, and dates of treatment 

• Names of all medications you are taking 

•Medical records from your doctors, therapists, hospitals, clinics, and 

caseworkers 

• Laboratory test and test results 

• A summary of where you have worked and the kind of work you did 

•A copy of your W-2 form (Wage and Tax Statement) or, if self-employed, your 

federal tax return for the past year 

• Dates of prior marriages if your spouse is applying 

(NOTE: If you don’t have all the information, start your application process and work 

with the Social Security office to get the additional information.) 

Never take “no” for an answer. Even if you are declined for benefits under SSI or 

Social Security Disability, you should appeal that decision and work with an advocate 

or your Social Security office to get whatever additional information you need to qualify. 

For more information about the appeals process, you may call the toll-free number, 

1-800-772-1213, and ask for the SSI fact sheet called “The Appeals Process,” 

publication number 05-10041, and “Social Security And Your Right to 

Representation,” publication number 05-10075. You can also access publications on 

the Internet at www.ssa.gov/pubs/englist.html. All requests for appeals should be 

sent to your local office; you can find the address of your local office at 

www.ssa.gov/locator. 

National Council on Disability (NCD) 

NCD is an independent federal agency consisting of 15 members appointed by the 

President and confirmed by the U.S. Senate. The goal of NCD is to promote policies 

that ensure equal opportunity for all individuals with disabilities. By making 

166€
recommendations to the President and Congress, NCD works to ensure that all 

individuals with disabilities have an opportunity to work, live independently, and 

integrate into all aspects of society. 

Department of Justice 

Title III of the Americans with Disabilities Act authorizes the U.S. Attorney’s office to 

sue entities discriminating against individuals with disabilities. DOJ is also 

responsible for enforcing Section 504 of the Rehabilitation Act, which prohibits any 

program or activity receiving federal funds from discriminating against any qualified 

individual with a disability. 

Equal Employment Opportunity Commission (EEOC) 

Title I of ADA prohibits disability-based discrimination by employers. ADA directs 

complaints under Title I to be filed with the EEOC. Complaints must be filed with the 

EEOC within 180 days of the discriminatory act. 

Rehabilitation Services Administration (RSA) 

The Rehabilitation Act authorizes grants to tribes to carry out VR programs. The 

Rehabilitation Act authorizes RSA under Section 121 to make grants to tribal 

governments for the costs of vocation rehabilitation of Indians with disabilities. 

Department of the Interior 

The Bureau of Indian Affairs is located within the Department of the Interior. BIA, 

which administers tribal schools, is responsible for the education of individuals with 

disabilities within these schools. BIA’s larger mission is to enhance the quality of 

life, to promote economic opportunity, and to protect and improve the trust assets of 

American Indians, Indian tribes, and Alaska Natives. BIA seeks to accomplish this by 

delivering quality services and maintaining government-to-government relationships 

within the spirit of Indian self-determination. (Currently, access to the Department of 

the Interior Web site is restricted in compliance with a court order.) 

167€
Administration on Developmental Disabilities (ADD) 

The ADD ensures that individuals with developmental disabilities and their families 

participate in the design of and have access to culturally competent services, 

supports, and other assistance and opportunities that promote independence, 

productivity, and integration and inclusion into the community. 

Department of Labor 

In the fiscal year 2001 Department of Labor appropriation, Congress approved an Office 

of Disability Employment Policy (ODEP) to be headed by an assistant secretary. ODEP’s 

mission is to provide leadership to increase employment opportunities for adults and 

youth with disabilities. ODEP is a federal agency in the Department of Labor. 

Administration on Aging (AOA) 

AOA provides home- and community-based services to millions of vulnerable and 

hard-to-reach older persons through programs funded under the Older Americans Act. 

Among these services are nutrition, such as home-delivered meals or meals served 

in congregate settings; transportation; legal assistance; and health promotion 

counseling and training. AOA’s National Family Caregiver Support Program focuses on 

those caring for family members who are chronically ill or who have disabilities. The 

program also helps those who are caring for younger family members, such as 

grandchildren and those with mental retardation or developmental disabilities. 

Centers for Medicare and Medicaid Services (CMS) 

CMS is a federal agency within the U.S. Department of Health and Human Services. 

CMS runs the Medicare and Medicaid programs—two national health care programs 

that benefit about 75 million Americans. And with the Health Resources and Services 

Administration, CMS runs the State Children’s Health Insurance Program, a program 

that is expected to cover many of the approximately 10 million uninsured children in 

the United States. 

Department of Housing and Urban Development (HUD) 

HUD offers programs, assistance, and loan programs specifically for Native American 

tribes, organizations, and sometimes individuals. HUD offers information on basic 

homebuying, fair housing, and housing counseling. 

168€
Office of Special Education Rehabilitation Services (OSERS) 

OSERS provides leadership to achieve full integration and participation in society of 

people with disabilities by ensuring equal opportunity and access to, and excellence 

in, education, employment, and community living. OSERS supports programs that 

help educate children and youth with disabilities and supports research to improve 

the lives of individuals with disabilities. 

Regional Rehabilitation Continuing Education Programs (RRCEPs) 

RRCEPs are training centers that serve a federal region by providing a broad 

integrated sequence of training activities that focus on meeting recurrent and 

common training needs of employed rehabilitation personnel. General RRCEPs 

provide training for state VR agency staff. Community Rehabilitation Program (CRP) 

RRCEPs provide training programs for staff of related public and private nonprofit 

rehabilitation agencies. Generally, RSA funds one general and one CRP RRCEP per 

Department of Education Region (Region IV has two general RRCEPs). 

Rural Utilities Service 

Rural Utilities Service is a Rural Development Agency of the U.S. Department of 

Agriculture. It helps rural America finance electric, telecommunications, and water 

and wastewater projects and make loans and grants for rural distance learning and 

telemedicine projects. It is also a policy and planning rural advocacy agency. 

Small Business Administration (SBA) 

SBA, created by Congress in 1953, helps America’s entrepreneurs form successful 

small enterprises. SBA’s program offices, in every state, offer financing, training, and 

advocacy for small firms. SBA works with thousands of lending, educational, and 

training institutions nationwide. If your business is independently owned and operated, 

not dominant within its field, and within certain size standards, the SBA can help. 

Temporary Assistance for Needy Families (TANF) 

All states, territories, the District of Columbia, and all federally recognized tribes in 

the lower 48 states and 13 specified entities in Alaska are eligible. TANF programs 

must operate under plans approved by HHS. Needy families with children are 

169€
determined to be eligible by the state, territory, or tribe in accordance with the state 

or tribal plan submitted to HHS. Needy families must meet state or tribal eligibility 

requirements. 

Administration for Native Americans (ANA) 

ANA promotes the goal of social and economic self-sufficiency of American Indians, 

Alaska Natives, Native Hawaiians, and other Native American Pacific Islanders, 

including Native Samoans. Self-sufficiency is that level of development at which a 

Native American community can control and internally generate resources to provide 

for the needs of its members and meet its own economic and social goals. Social 

and economic underdevelopment is the paramount obstacle to the self-sufficiency of 

Native American communities and families. 

ANA is the only federal agency serving all Native Americans, including over 500 

federally recognized tribes, 60 tribes that are state recognized or seeking federal 

recognition, Indian organizations, over 200 Alaska villages, Native Hawaiian 

communities, and populations throughout the Pacific Basin. 

National Disability Organizations 

A number of private organizations are dedicated to improving services for individuals 

with disabilities, including organizations concerned specifically with the needs of 

American Indians and Alaska Natives. 

American Indian Disability Technical Assistance Center (AIDTAC) 

The University of Montana Rural Institute€

Center of Excellence in Disability Education, Research, and Services€

52 Corbin Hall€

Missoula, MT 59812-7056€

Phone: (800) 732-0323; (406) 243-5467€

AIDTAC, funded by a grant from the RSA, is an informational and technical assistance€

resource available to tribes. AIDTAC’s goal is to assist tribes in formulating and€

implementing programs and policies that will reduce barriers to independent living€

and to provide opportunities for employment to individuals with disabilities.€

170€
American Indian Rehabilitation Research and Training Center (AIRRTC) 

Institute for Human Development€

Northern Arizona University€

PO Box 5630€

Flagstaff, AZ 86001-5630€

Phone: (928) 523-4791€

Fax: (928) 523-9127€

TTY/TDD: (928) 523-1695€

Web site: www4.nau.edu/ihd/airrtc/located.htm€

The mission of AIRRTC is to improve the quality of life for American Indians and€

Alaska Natives with disabilities through the conduct of research and training that will€

result in culturally appropriate and responsive rehabilitation services, to improve€

employment outcomes and facilitate access to services for American Indians and€

Alaska Natives with disabilities, and to increase the participation of American€

Indians and Alaska Natives in the design and delivery of rehabilitation services for€

employment outcomes.€

Consortia of Administrators for Native American Rehabilitation (CANAR) 

Institute for Human Development€

Northern Arizona University€

PO Box 5630€

Flagstaff, AZ 86001-5630€

Phone: (928) 523-4791€

Fax: (928) 523-9127€

TTY/TDD: (928) 523-1695€

Web site: www4.nau.edu/ihd/airrtc/located.htm€

*Through September 30, 2003, CANAR will use the AIRRTC office as its 

administrative headquarters. 

The mission of CANAR is to serve as an avenue for collaboration and cooperation 

between administrators of rehabilitation projects serving Native American persons 

with disabilities and to increase and enhance the quality of services, resulting in 

positive outcomes for Native American persons with disabilities. 

171€
Intertribal Deaf Council (IDC) 

PO Box 17664€

Salem, OR 97305€

TTY/TDD: (301) 577-5665€

Fax: (503) 304-1961€

E-mail: intertribaldeaf@aol.com€

Web site: www.deafnative.com€

The IDC is a nonprofit organization of deaf and hard-of-hearing American Indians€

whose goals are similar to many Native American organizations. The IDC promotes€

the interests of its members by fostering and enhancing their cultural, historical, and€

linguistic tribal traditions. The council not only discusses issues related to the social,€

educational, economic, and environmental well-being of its members but also strives€

to provide useful information on human rights and resources for solutions.€

National Youth Leadership Network (NYLN) 

Web site: www.nyln.org/index.php 

The National Youth Leadership Network (NYLN) is dedicated to advancing the next 

generation of disability leaders. It accomplishes this task by doing the following: 

•Promoting leadership development, education, employment, independent living, 

and health and wellness among young leaders representing the diversity of 

race, ethnicity, and disability in the United States 

•Fostering the inclusion of young leaders with disabilities into all aspects of 

society at national, state, and local levels 

•Communicating about issues important to youth with disabilities and the 

policies and practices that affect their lives 

American Association of People with Disabilities 

1819 H Street NW, Suite 330€

Washington, DC 20006€

Phone: (800) 840-8844; (202) 457-0046€

Fax: (202) 457-0473€

Web site: www.aapd.com€

The American Association of People with Disabilities is a nonprofit, nonpartisan,€

cross-disability membership organization whose goals are unity, leadership, and€

impact. Membership is $19.95 per year.€

172€
American Indian Rehabilitation Rights Organization of Warriors (AIRROW) 

Phone: (406) 883-3817 

AIRROW is a grassroots, unincorporated organization whose goal is to improve the 

lives of American Indians with disabilities. 

American Indian Higher Education Consortium (AIHEC) 

121 Oronoco Street€

Alexandria, VA 22314€

Phone: (703) 838-0400€

Fax: (703) 838-0388 fax€

E-mail: aihec@aihec.org€

AIHEC’s mission is to support the work of tribal colleges and the national movement€

for tribal self-determination. AIHEC identifies four objectives: maintain commonly held€

standards of quality in American Indian education; support the development of new€

tribally controlled colleges; promote and assist in the development of legislation to€

support American Indian higher education; and encourage greater participation by€

American Indians in the development of higher education policy.€

Association of Programs in Rural Independent Living (APRIL) 

Linda Gonzales€

5903 Powder Mill Road€

Kent, OH 44240€

Phone: (330) 678-7648€

Fax: (330) 678-7658€

Web site: http://april.umt.edu€

APRIL is a national network of rural independent living centers, other programs, and€

individuals concerned with the unique aspects of rural independent living. APRIL is a€

nonprofit, 501(c)(3) organization that promotes independence and strives for full€

rights and benefits of persons with disabilities living in rural America.€

173€
Council of State Administrators of Vocational Rehabilitation (CSAVR) 

Suite 330€

4733 Bethesda Avenue€

Bethesda, MD 20814€

Phone: (301) 654-8414€

Fax: (301) 654-5542€

Web site: www.rehabnetwork.org€

Institute for Community Inclusion/UCE 

UMass Boston€

100 Morrissey Boulevard€

Boston, MA 02125€

Phone: (617) 287-4300€

Fax: (617) 287-4352€

Web site: www.communityinclusion.org€

The Institute supports employing people with disabilities in community settings;€

supporting children and young adults with special health care needs; accessing€

general education and transitioning from school to adult life; expanding local€

recreation and school activities to include people with disabilities; promoting€

technology that aids participation in school/community/work activities; building€

organizations’ abilities to serve culturally diverse people with disabilities; and€

examining the impact of national and state policies on people with disabilities and€

their families.€

Job Accommodation Network (JAN) 

West Virginia University€

PO Box 6080€

Morgantown, WV 26506-6080€

Phone: (800) 526-7234; (800) ADA-WORK; (304) 293-7186€

Fax: (304) 293-5407€

Web site: http://janWeb.icdi.wvu.edu€

JAN is a free consulting service that provides information about job€

accommodations, ADA, and the employability of people with disabilities.€

174€
Minority Business Development Agency (MBDA) 

U.S. Department of Commerce 

Minority Business 

Washington, DC 20230 

Phone: (202) 482-0404 

Fax: (202) 482-2678 

E-mail: help@mbda.gov 

Web site: www.mbda.gov 

MBDA provides management and technical assistance; information, and advice on 

starting, managing, and expanding a business enterprise to socially or economically 

disadvantaged individuals. MBDA also assists public- and private-sector 

organizations to increase purchases from minority vendors. MBDA does not provide 

any grants, loans, or loan guarantees to purchase, start, or run a business. MBDA 

will, however, fund organizations to provide management and technical assistance to 

minority entrepreneurs. MBDA administers the Minority Business Development Center 

Program, which helps existing minority-owned firms expand and avoid failure. Centers 

assist with business financial planning, management, and marketing, bid estimating 

and construction bonding, loan packing, and other business services. 

National American Indian Housing Council (NAIHC) 

900 2nd Street NE, Suite 305€

Washington, DC 20002€

Phone: (202) 789-1754; (800) 284-9165€

Fax: (202) 789-1758€

Web site: http://naihc.indian.com/index.html€

National Congress of American Indians (NCAI) 

1301 Connecticut Avenue NW, Suite 200€

Washington, DC 20036€

Phone: (202) 466-7767€

Fax: (202) 466-7797€

Web site: www.ncai.org€

NCAI’s mission is to inform the public and the Federal Government on tribal self-€

government, treaty rights, and a broad range of federal policy issues affecting tribal€

governments. NCAI includes a subcommittee on disabilities.€

175€
National Council on Independent Living (NCIL) 

1916 Wilson Boulevard, Suite 209€

Arlington, VA 22201€

Phone: (703) 525-3406€

TTY/TDD: (703) 525-4153€

Fax: (703) 525-3409€

E-mail: ncil@ncil.org€

Web site: www.ncil.org€

NCIL is a membership organization that advances the independent living philosophy€

and advocates for the human rights of, and services for, people with disabilities to€

further their full integration and participation in society.€

National Indian Council on Aging (NICOA) 

10501 Montgomery Boulevard NE, Suite 210€

Albuquerque, NM 87111-3846€

Phone: (505) 292-2001€

Fax: (505) 292-1922€

Web site: www.nicoa.org/index1.html€

NICOA serves as the foremost nonprofit advocate for the nation’s (estimated)€

296,000 American Indian and Alaska Native elders. NICOA strives to better the lives€

of the nation’s indigenous seniors through advocacy, employment training,€

dissemination of information, and data support.€

National Indian Education Association (NIEA) 

700 North Fairfax Street, Suite 210€

Alexandria, VA 22314€

Phone: (703) 838-2870€

Fax: (703) 838-1620€

E-mail: niea@niea.org€

Web site: www.niea.org€

NIEA’s mission is to support traditional Native cultures and values, to enable Native€

learners to become contributing members of their communities, to promote Native control€

of educational institutions, and to improve educational opportunities and resources for€

American Indians, Alaska Natives, and Native Hawaiians throughout the United States.€

176€
National Indian Health Board (NIHB) 

101 Constitution Avenue NW, Suite 8B09€

Washington, DC 20001€

Phone: (202) 742-4262€

Fax: (202) 742-4285€

E-mail: jgrimm@nihb.org€

Web site: www.nihb.org€

NIHB represents tribal governments operating their own health care delivery systems€

through contracting and compacting, as well as those receiving health care directly from€

the IHS. NIHB is a nonprofit organization that conducts research, policy analysis, program€

assessment and development, national and regional meeting planning, training and€

technical assistance programs, and project management. Services are provided to tribes,€

area health boards, tribal organizations, federal agencies, and private foundations.€

United Parent Syndicate on Disabilities (UPSD) 

The Drew Building€

5727 Palazzo Way, Suite B€

Douglasville, GA 30134€

Phone: (770) 577-3307; (202) 223-4295 (Washington, DC, office)€

E-mail: united_parent@mindspring.com€

Web site: www.peppac.org€

UPSD is a nonprofit organization dedicated to empowering parents. UPSD provides€

its members with the most up-to-date information on the activities of all three€

branches of government that affect individuals with disabilities and their families.€

177€
Office of Indian Education Programs (OIEP) 

1849 C Street NW€

MS-3512 MIB€

Washington, DC 20240€

Phone: (202) 208-6123€

Fax: (202) 208-3312€

Web site: www.oiep.bia.edu€

The mission of BIA’s OIEP is to provide quality education opportunities from early€

childhood through life in accordance with each tribe’s needs for cultural and€

economic well-being in keeping with the wide diversity of Indian tribes and Alaska€

Native villages as distinct cultural and governmental entities.€

Oyaté Project—“Metakuý Oyasin” or “All My Relations”€

Center for Continuing Education in Rehabilitation€

6912 220th Street SW #105€

Mountlake Terrace, WA 98043€

Phone: (425) 774-4446; (888) 377-0100€

Fax: (425) 774-9303€

Web site: www.ccer.org/natamer/oyate.htm€

The Oyaté Project, administered through Western Washington University’s Capacity€

Building Project, offers assistance to Native American Vocational Rehabilitation€

Projects (Section 121) in recruiting, retaining, and developing staff in order to€

enhance their capacity to serve their consumers.€

178€
Montana Rural Institute on Disabilities (RID) 

The University of Montana€

52 Corbin Hall€

Missoula, MT 59812€

Phone: (800) 732-0323; (406) 243-5467€

Fax: (406) 243-4730€

Web site: http://ruralinstitute.umt.edu€

RID, a part of the national network of programs funded by the ADD, is committed to€

assisting in the provision of interdisciplinary training, research, service demonstration€

programs, leverage of funds, and information dissemination to support the independence,€

productivity, and inclusion into the community of people with developmental disabilities.€

RTC: Rural—Research and Training Center on Rural Rehabilitation Services 

The University of Montana€

52 Corbin Hall€

Missoula, MT 59812€

Phone: (888) 268-2743; (406) 243-2460€

Fax: (406) 243-4730€

Web site: http://rtc.ruralinstitute.umt.edu€

RTC: Rural is funded by the U.S. Department of Education. Rural Americans with€

disabilities and those who serve them experience problems with access to€

transportation and housing, employment and self-employment, independent living€

services, health and wellness facilities, and inclusion in community planning and€

activities. Our goal is to use scientific methods to develop solutions to these wide-€

ranging problems.€

179€
San Diego State University (SDSU) 

Interwork Institute 

3590 Camino Del Rio North 

San Diego, CA 92108 

Phone: (619) 594-4220 

Fax: (619) 594-4208 

In 1994, SDSU’s Interwork Institute was awarded a cooperative agreement to 

establish the Rehabilitation Research and Training Center of the Pacific to address 

critical issues related to the needs of Pacific Islanders with disabilities. Research 

and training is conducted in the State of Hawaii, the Republic of Palau, the 

Federated States of Micronesia (Chuuk, Kosrae, Pohnpei, Yap), the Republic of the 

Marshall Islands, the Territory of Guam, the Commonwealth of the Northern 

Marianas, and the Territory of American Samoa. SDSU is an AIDTAC partner. 

United Southern and Eastern Tribes, Inc. (USET) 

711 Stewarts Ferry Pike, Suite 100€

Nashville, TN 37214€

Phone: (615) 872-7900€

Fax: (615) 872-7417€

Web site: http://usetinc.org€

USET, Inc., composed of 25 nations, is dedicated to enhancing the development of€

Indian tribes, improving the capabilities of tribal governments, and assisting the€

member tribes and their governments in dealing effectively with public policy issues€

and in serving the broad needs of Indian people.€

180€
World Institute on Disability (WID) 

510 16th Street, Suite 100€

Oakland, CA 94612€

Phone: (510) 763-4100€

TTY/TDD: (510) 208-9496€

Fax: (510) 763-4109€

E-mail: Webpoobah@wid.org€

Web site: www.wid.org€

WID is a nonprofit, public policy center dedicated to promoting independence and full€

societal inclusion of people with disabilities.€

Work Incentives Transition Network (WITN) 

Virginia Commonwealth University€

Rehabilitation Research and Training Center€

1314 West Main Street€

Richmond, VA 23284€

Phone: (804) 828-1851€

E-mail: tcblanke@saturn.vcu.edu€

Web site: www.vcu.edu/rrtcWeb/witn/ssi.htm€

WITN is a collaborative project funded by the U.S. Department of Education, Office of€

Special Education Programs. The Network’s purpose is to increase educators’, family€

members’, transition age students’, and advocates’ awareness of Social Security€

Work Incentives for school-aged youth with disabilities including the Plan for€

Achieving Self-Support, the Impairment Related Work Expense, and the Student€

Earned Income Exclusion.€

181€
National Association of Protection and Advocacy Systems (NAPAS) 

900 2nd Street NE, Suite 211€

Washington, DC 20002€

Phone: (202) 408-9514€

Fax: (202) 408-9520€

E-mail: info@napas.org€

Web site: www.protectionandadvocacy.com€

NAPAS works in partnership with people with disabilities to protect, advocate for, and€

advance their human, legal, and service rights. NAPAS strives toward a society that€

values all people and supports their rights to dignity, freedom, choice, and quality of life.€

Native American Association of Protection and Advocacy 

DNA—People’s Legal Services, Inc.€

PO Box 392€

Shiprock, NM 87240€

Phone: (505) 368-3216€

Fax: (505) 368-3220€

E-mail: Tyanan@dnalegalservices.org€

Consumers who contact these organizations can also learn of any available€

assistance located closer to their homes. Legal staff can suggest additional€

resources to help children and parents.€

References 

Castle, Michael Rep. (2002). Opening Statement of Hearing on “Rethinking Special 

Education: How to Reform the Individuals with Disabilities Education Act.” 

Committee on Education and the Workforce, Subcommittee on Education Reform. 

Retrieved May 2, 2002, from http://edworkforce.house.gov/hearings/107th/edr/ 

idea/5202/oscastle.htm. 

United States Department of Justice (DOJ), Civil Rights Division. (2001, August). 

Guide to disability rights laws. Retrieved August 2002, from www.usdoj.gov/crt/ 

ada/cguide.htm. 

182€
Disability

Etiquette

Handbook 
Disability Etiquette Handbook 

People with disabilities are people first. They are not their conditions or diseases. 

Lack of awareness about disabilities can lead to unintended stereotypes and 

discrimination. How we view and communicate with and about people with 

disabilities shape our relationships. This guiding principle is as true in American 

Indian and Alaska Native communities as it is in the general population. American 

Indian and Alaska Native people with disabilities want to be dealt with as people. 

How we refer to people with disabilities in our communication is important. For 

example, a person is not an epileptic but rather a person who has epilepsy. In any 

reference, article, announcement, or advertisement, “people with disabilities” is the 

appropriate and preferred initial reference. Subsequent references can use the terms 

“person with a disability” or “individuals with disabilities” for grammatical or narrative 

reasons. Please refer to the Glossary of Acceptable Terms below for a complete 

listing of acceptable terms and appropriate applications. 

This section contains information and awareness-building resources to assist in 

developing effective and respectful communication practices within our Native 

communities. This resource can be particularly useful to new program staff who have 

not worked in the area of disabilities before and to help orient tribal leaders and 

other community program staff who want to better understand how to work effectively 

for people with disabilities in tribal communities. The AI/AN consumers who served 

on the Technical Expert Panel that designed this Toolkit believed very strongly that a 

brief guide was needed to help tribal programs and tribal leaders understand 

fundamental dos and don’ts regarding people with disabilities. 

183

Dos and Don’ts


• Do learn where to find and recruit people with disabilities. 

• Do learn how to communicate with people who have disabilities. 

•	 Do ensure that your applications and other company forms do not ask 

disability-related questions and that they are in formats that are accessible to 

all persons with disabilities. 

• Do have written job descriptions that identify the essential functions of each job. 

•	 Do ensure that requirements for medical examinations comply with the 

Americans with Disabilities Act (ADA). 

• Do relax and make the applicant feel comfortable. 

•	 Do provide reasonable accommodations that the qualified applicant will need 

to compete for the job. 

•	 Do treat an individual with a disability the same way you would treat any 

applicant or employee—with dignity and respect. 

•	 Do know that among those protected by ADA are qualified individuals who have 

AIDS or cancer or who are mentally retarded, traumatically brain-injured, deaf, 

blind, or learning disabled. 

•	 Do understand that access includes not only providing environmental access, 

but also making forms accessible to people with visual or cognitive disabilities 

and making alarms and signals accessible to people with hearing disabilities. 

• Do develop procedures for maintaining and protecting confidential medical records. 

• Do train supervisors on making reasonable accommodations. 

• Don’t assume that persons with disabilities do not want to work. 

•	 Don’t assume that alcoholism and drug abuse are not real disabilities, or that 

recovering drug abusers are not covered by ADA. 

• Don’t ask if a person has a disability during an employment interview. 

• Don’t assume that certain jobs are more suited to persons with disabilities. 

•	 Don’t hire a person with a disability if that person is at significant risk of 

substantial harm to the health and safety of the public and there is no 

reasonable accommodation to reduce the risk or harm. Do not make this 

decision yourself. Consult with an attorney or personnel director when making 

184

such a determination. Your assumptions about a disability may be incorrect or 

unfounded. 

•	 Don’t hire a person with a disability who is not qualified to perform the 

essential functions of the job even with a reasonable accommodation. 

• Don’t assume that you have to retain an unqualified employee with a disability. 

•	 Don’t assume that your current management will need special training to learn 

how to work with people with disabilities. 

•	 Don’t assume that the cost of accident insurance will increase as a result of 

hiring a person with a disability. 

•	 Don’t assume that the work environment will be unsafe if an employee has a 

disability. 

• Don’t assume that reasonable accommodations are expensive. 

•	 Don’t speculate or try to imagine how you would perform a specific job if you 

had the applicant’s disability. 

• Don’t assume that you don’t have any jobs that a person with a disability can do. 

• Don’t assume that your work place is accessible. 

• Don’t make medical judgments. 

•	 Don’t assume that a person with a disability can’t do a job because of 

apparent or nonapparent disabilities. 

Conversation Etiquette 

When talking to a person with a disability, look at and speak directly to that person, 

rather than the companion. When an interpreter is present, please look at the person 

who is deaf, not the interpreter, when communicating. 

Relax. Don’t be embarrassed if you happen to use accepted common expressions 

such as “See you later” or “Got to be running along” that seem to relate to the 

person’s disability. 

To get the attention of a person who is deaf or hard of hearing, tap the person on the 

shoulder, wave your hand, or, in a large group, flicker the lights. Look directly at the 

person and speak clearly, naturally, and slowly to establish whether the person can 

185

read lips. Not all persons who are deaf can lip-read. Those who can will rely on facial 

expression and other body language to help in understanding. Show consideration by 

placing yourself under or near a light source and keeping your hands and food away 

from your mouth when speaking. Keep mustaches well-trimmed. Shouting won’t help. 

Written notes to the person who is deaf or hard of hearing, however, may help 

facilitate the communication process. 

When talking with a person in a wheelchair for more than a few minutes, sit in a 

chair, whenever possible, in order to place yourself at the person’s eye level to 

facilitate conversation. When greeting a person with a severe loss of vision, always 

identify yourself and others who may be with you. 

Example: On my right is Candice Red Shawl. 

When conversing in a group, give a vocal cue by announcing the name of the person 

to whom you are speaking. Speak in a normal tone of voice, indicate in advance 

when you will be moving from one place to another, and let it be known when the 

conversation is at an end. 

Listen attentively when you’re talking to a person who has a speech disability. Keep 

your manner encouraging rather than correcting. Exercise patience rather than 

attempting to speak for a person with a speech difficulty. When necessary, ask short 

questions that require short answers or a nod or a shake of the head. Never pretend 

to understand if you are having difficulty doing so. Repeat what you understand, or 

incorporate the interviewee’s statements into each of the following questions. The 

person’s reactions will clue you in and guide you. 

If you have difficulty communicating, be willing to repeat or rephrase a question. 

Open-ended questions are more appropriate than closed-ended questions. Examples: 

Closed-Ended Question: You were a case manager in Social Services with the 

Three Affiliated Tribes for seven years. Is that correct? 

Open-Ended Question: Tell me about your recent position as a case manager. 

Do not shout at a person with a disability. Shouting distorts speech for a deaf or hardof-hearing person and is inappropriate for a blind or low vision person who can hear. 

186

Glossary of Acceptable Terms


Person with a disability. (Unacceptable: Handicapped or impaired) 

Disability, a general term used for functional limitation that interferes with a person’s 

ability to walk, hear, or lift, for example. It may refer to a physical, mental, or sensory 

condition. (Unacceptable: Impaired, handicap, handicapped person, or handicapped) 

People with cerebral palsy, people with spinal cord injuries. (Unacceptable: 

Cerebral palsied, spinal cord injured. Never identify people solely by their disability.) 

Person who had a spinal cord injury, polio, a stroke, etc., or a person who has 

multiple sclerosis, muscular dystrophy, arthritis, etc. (Unacceptable: Victim. People 

with disabilities do not like to be perceived as victims for the rest of their lives, long 

after any victimization has occurred.) 

Has a disability, has a condition of (spina bifida, etc.), or born without legs, etc. 

(Unacceptable: Defective, defect, deformed, vegetable. These words are offensive, 

dehumanizing, degrading, and stigmatizing.) 

Deaf. Deafness often refers to a person who has a total loss of hearing. Hard of 

hearing refers to a person who has a partial loss of hearing within a range from 

slight to severe. Hard of hearing also describes a person who communicates through 

speaking and speech-reading, and who usually has listening and hearing abilities 

adequate for ordinary telephone communication. Many hard-of-hearing individuals 

use a hearing aid. Deaf people are sometimes able to speak and speech-read, 

despite profound hearing loss. Most people who identify themselves as deaf also 

use sign language. (Unacceptable: Hearing impaired; deaf and dumb is as bad as it 

sounds. The inability to speak does not indicate lack of intelligence.) 

Person who has a mental or developmental disability. (Unacceptable: Retarded, 

moron, imbecile, idiot. These are offensive to people who bear the label.) 

187

Use a wheelchair or crutches; a wheelchair user; walks with crutches. 

(Unacceptable: Confined/restricted to a wheelchair; wheelchair bound. Most people 

who use a wheelchair or mobility devices do not regard them as confining. They are 

viewed as liberating, a means of getting around.) 

Nondisabled; able to walk, see, hear, etc.; people who are not disabled. 

(Unacceptable: Healthy, when used to contrast with “disabled”—Healthy implies that 

the person with a disability is unhealthy. Many people with disabilities have excellent 

health. Normal—When used as the opposite of disabled, this implies that the person 

is abnormal. No one wants to be labeled as abnormal.) 

A person who has (name of disability). Example: a person who has multiple 

sclerosis. (Unacceptable: Afflicted with, suffers from, a victim of—Most people with 

disabilities do not regard themselves as victim or afflicted or suffering continually. 

Afflicted—a disability is not an affliction.) 

Preparing for Sign Language Interpreters 

When hiring an interpreter for a presenter who is deaf or for making presentations to 

an audience that may include participants who are deaf, remember that the 

interpreter is there to facilitate communication. An interpreter is always a neutral, 

uninvolved party. Interpreters are part of the team meant to deliver accurate and 

intended messages given by all parties. 

The more advance notice that is provided to the interpreter, the more prepared he/ 

she will be. This process will allow the interpreter to have the proper time needed for 

a meeting or event and prevent “cold” interpreting. Time for preparation is essential 

to allow accurate dissemination of the intended messages to the audience. 

In addition to the name and type of event, always provide the name of the event 

contact person and a phone number. Give the following information to the interpreter 

to enhance the quality of the interpreted meeting/event: 

•	 Clear address and directions to the event and the location where the interpreter 

is to check-in. 

• Correct spellings of all names of those speaking or performing. 

188

•	 A summary of subjects that will be presented by each speaker. Provide copies 

of any handouts for the interpreter prior to the meeting or event. 

•	 A list of terms, acronyms, and words that are specific to the discussion, such 

as the usage of IHS (Indian Health Service) or BIA (Bureau of Indian Affairs). 

•	 Many times the names of tribes are difficult to interpret, so spellings or any 

abbreviated descriptions would be helpful. 

If any information to be presented is in a language other than English, a written 

interpretation in English will be needed in advance. Any time you have lights on the 

presenter you will also need to have lights for the interpreter, especially if the event 

is inside an auditorium or in any dark area. 

Resources Regarding Interpreters 

Intertribal Deaf Council (IDC) 

Web site: www.deafnative.com 

IDC promotes the interests of deaf and hard-of-hearing members to advance issues 

related to social, educational, economic, and environmental well-being by fostering 

and enhancing their cultural, historical, and linguistic tribal traditions. 

The National Association of the Deaf (NAD) 

814 Thayer Avenue


Silver Spring, MD 20910-4500


Phone: (301) 587-1788


TTY: (301) 587-1789


Fax: (301) 587-1791


Web site: www.nad.org/openhouse/affiliates/SAs.html


The NAD is a private, nonprofit constituency organization with affiliates in each state


and the District of Columbia. A complete listing of state associations can be found at


the NAD Web site. Programs and activities of the NAD include grassroots advocacy


and empowerment; captioned media; certification of American Sign Language


professionals; certification of sign language interpreters; deafness-related


information and publications; legal assistance; policy development and research;


public awareness; and youth leadership development.


189

Registry of Interpreters for the Deaf, Inc. (RID) 

333 Commerce Street 

Alexandria, VA 22314 

Voice: (703) 838-0030 

TTY: (703) 838-0459 

Fax: (703) 838-0454 

RID is a national nonprofit association for sign language interpreters with over 50 

state and local affiliate offices. For additional guidance in working with an 

interpreter, instructions on how to hire an interpreter, or links to finding an 

interpreter, see the RID Web site. 

Service Animals 

Over 12,000 people with disabilities in the United States use service animals; many 

of those people are in tribal communities. It is important to know about service 

animals and to find ways to ensure safe and comfortable access for people with 

disabilities in tribal communities to be accompanied by these vitally important aids. 

Service animals should be accommodated in tribal, federal, and other public 

buildings in tribal communities. Tribal housing developments should also consider 

ways to ensure adequate access for people with disabilities who use service 

animals. Although the most familiar types of service animals are guide dogs used by 

people who are blind, service animals assist persons who have other disabilities as 

well. Many disabling conditions are invisible. A service animal is not required to have 

any special certification. 

What Is a Service Animal? 

A service animal is not a pet! 

According to ADA, a service animal is any animal that has been individually trained to 

provide assistance or perform tasks for the benefit of a person with a physical or 

mental disability that substantially limits one or more major life functions 

Service animals/service dogs can be trained to reliably perform many tasks, 

including the following: 

190

•	 Leading a person who has a visual impairment around obstacles, to 

destinations (seating, across street, to/through door, to/into elevator, etc.). 

•	 Sound discrimination to alert a person who is deaf or hard of hearing to the 

presence of specific sounds, such as 

— Smoke/fire/clock alarms 

— Telephone 

— Baby crying 

— Sirens 

— Another person 

— Timers buzzing 

— Knocks at door 

— Unusual sounds (e.g., things that go bump in the night, mice in the cabinet) 

• General assistance, including 

—	 Mobility (helping person balance for transfer/ambulation, pulling 

wheelchair, helping person rise from sitting or fallen position) 

—	 Retrieval (getting items that are dropped or otherwise out of reach, 

carrying items by mouth) 

—	 Scent discrimination (locate items; people; places, such as bathrooms, 

elevators, escalators, return path) 

—	 Miscellaneous (e.g., open/close doors and drawers, help person undress/ 

dress, carry items in backpack, act as physical buffer to jostling by others, 

put clothes in washer/remove from dryer, bark to alert for help) 

•	 Sense and alert owners to oncoming seizures. It is currently unknown why or 

how some dogs are able to do this, but a number of dogs have demonstrated 

the ability to warn their owners of oncoming seizures, enabling the owners to 

position themselves safely. 

•	 Emotional support, providing a known, trusting entity to facilitate homeostasis 

(e.g., maintenance of blood pressure, respiration, heart rate, temperature) 

during potentially difficult episodes. (Delta Society, 2002) 

191

Service Animal Access 

The civil rights of persons with disabilities to be accompanied by their service 

animals in all places of public and housing accommodations is protected by the 

following federal laws: 

• Americans with Disabilities Act (1990) 

• Air Carrier Access Act (1986) 

• Fair Housing Amendments Act (1988) 

• Rehabilitation Act (1973) 

Service Animal Etiquette 

• Do not touch the service animal, or the person it assists, without permission. 

•	 Do not make noises at the service animal; they may distract the animal from 

doing its job. 

• Do not feed the service animal; doing so may disrupt its schedule. 

•	 Do not be offended if the person does not feel like discussing his/her disability 

or the assistance the service animal provides. Not everyone wants to be a 

walking show-and-tell exhibit. 

Service Animal Resources 

The Delta Society 

580 Naches Avenue SW, Suite 101


Renton, WA 98055-2297


Phone: (425) 226-7357


Fax: (425) 235-1076


E-mail: info@deltasociety.org


The Delta Society is the leading international resource for the human-animal bond.


The Delta Society has been the force to validate the important role of animals for


people’s health and well-being by promoting the results of research to the media and


health and human services organizations.


192

Canine Companions for Independence


National Headquarters & Northwest Regional Center


2965 Dutton Avenue


PO Box 446


Santa Rosa, CA 95402-0446


Phone: (707) 577-1700


TDD: (707) 577-1756


E-mail: info@caninecompanions.org


Dogs for the Deaf 

10175 Wheeler Road


Central Point, OR 97502


Voice/TDD: (541) 826-9220


Fax: (541) 826-6696


E-mail: info@dogsforthedeaf.org


Dogs for the Deaf’s mission is to rescue and professionally train dogs to assist


people and enhance their lives. Hearing dogs are chosen from adoption shelters,


where they might otherwise be euthanized if no homes are found for them. By using


shelter dogs, Dogs for the Deaf is able to help alleviate some of the unwanted dog


population by rescuing these dogs, training them, and placing them in loving homes


where they can provide an important service. The dogs are usually mixed breeds,


small to medium in size, and up to 24 months of age. The trainers look for dogs that


are friendly, energetic, healthy, and intelligent. Each dog is individually evaluated by


a Dogs for the Deaf trainer. Those passing the aptitude tests are brought back to the


facility for a thorough medical evaluation and needed vaccinations. All dogs are


spayed or neutered and then begin the intensive 4 to 6 months of training.


193

References


City of San Antonio Disability Access Office/Planning Department. (2000). Disability 

Etiquette Handbook. 

Delta Society. (2002). The Human-Animal Health Connection. Retrieved October 24, 

2002, from www.deltasociety.org/dsb300.htm#tasks. 

194