Understanding Disabilities in American Indian & Alaska 

Native Communities Toolkit Guide

National Council on Disability

February, 2023
National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

Understanding Disabilities in American Indian & 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: February, 2023

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.

This project was supported by the Administration for Community Living (ACL), U.S. Department of 

Health and Human Services (HHS) as part of a financial assistance award totaling $284,127.60 with 

75 percentage funded by ACL/HHS and $71,715.00 and 25 percentage funded by non-governmental 

source(s). The contents are those of the author(s) and do not necessarily represent the official views of, 

nor are an endorsement, by ACL/HHS, or the U.S. Government.
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 people in the American Indian and 

Alaska Native communities. The universal meaning in each symbol is described in the captions below 

along with the meanings of the symbol as it is used in this Toolkit specifically.

Access for People Who Are Blind or Visually Impaired

Universally, this symbol identifies areas that are specifically designed to be accessible 

to or in some cases tailored to the unique abilities of people who are blind or visually 

impaired. Within the Toolkit, this symbol is used to represent the community of people 

for whom sight is not a primary sensory tool.

Mobility Access

The wheelchair symbol indicates access for people who have a mobility disability, 

including people who use wheelchairs. The symbol is most commonly used to indicate 

an accessible entrance, bathroom, or environment that is sensitive to people with 

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

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

Communication Access for People Who Are Deaf or Hard of Hearing

The signing hands 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 people whose primary means of 

communication is sign language.

Hidden Disabilities

The face beneath face 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 people with an unseen disability such as 

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 people who have 

disabilities that are not externally visible but significantly impact an individual’s life.
2 National Council on Disability/National Indian Council on Aging
Acknowledgements

Understanding Disabilities in American Indian and Alaska Native Communities Toolkit Guide was 

developed through the passionate collaboration of many people. 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 people 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 

AI/AN communities nationally and offer a new hope to so many people who for so long have felt 

invisible with no voice.

Thank you to our project researcher/writer Robin Troup. She contributed greatly to the success of 

the project.

Special Acknowledgement

The National Council on Disability issues this publication in honor of the late Dr. Geraldine-Drake 

“Gerrie” Hawkins. Dr. Hawkins served as NCDs Senior Policy Analyst until her death in 2016. We 

are dedicating this toolkit to her because of her longstanding work, keen interest, and unwavering 

commitment to making certain that tribal and American Indian issues were included in disability rights 

efforts. She recognized the intersectionality of so many issues long before intersectionality made its 

way into the national consciousness.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 3
4 National Council on Disability/National Indian Council on Aging
Technical Expert Panel

Several people representing consumers and advocates within the American Indian and Alaska 

Native disability communities 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:

Rachel Allen

Iris Andreas

Gina Anthony

Hoskie Benally

Marilyn Bread

Sara Candelaria

Vibrina Coronado

Mary Frances Cotch

Cindy Curley

Dr. Crystal Hernandez

Ashely Hesse

Wendelin M. Hume

Anita Lena

Amie Lulinski

Lisa C. McGuire

Catherine Offutt

Crystal Pocan

Joseph Ray

Billie Tohee

Dorothy L. Wait

Ela Yazzie-King

Dr. Kimberly F. Yellow Rose

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 5
6 National Council on Disability/National Indian Council on Aging
Contents

About the Cover . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

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

Chapter 1: Introduction to Understanding Disabilities in Indian Country . . . . . . . . . . .  

Chapter 2: Health Care and Federal Health Insurance Programs . . . . . . . . . . . . . . . .  3

Chapter 3: Sports & Recreation for People with Disabilities . . . . . . . . . . . . . . . . . . . .  4

Chapter 4: Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Chapter 5: Independent Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101

Chapter 6: Vocational Rehabilitation and Employment . . . . . . . . . . . . . . . . . . . . . . . . 117

Chapter 7: Assistive Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

Chapter 8: Transportation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147

Chapter 9: Accessible Housing & Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Chapter 10: Key Elements of Effective Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 199

Chapter 11: Advocating Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 201

Disability Etiquette Handbook . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  21

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  22

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 7
8 National Council on Disability/National Indian Council on Aging
Chapter 1: Introduction to Understanding Disabilities 

in Indian Country

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 have equal rights upon it. . . . Let me be a free man, 

free to travel, free to and talk and act for myself.

Chief Joseph, Nez Perce

Lincoln Hall speech (1879)

Chief Joseph understood the basic dignity 

and rights of all people, and we are still 

working to realize his vision. In the 1980s, 

attitudes about people with disabilities began 

to change with the Social Model of Disability, 

which states, “People with disabilities are people 

first.” A disability is not a person’s whole identity. 

A disability is just one part of the person.

It is understood that AI/AN people with 

disabilities do not need to be “cured” or 

“fixed” but do need to be valued and included 

in all aspects of society. In truth, the effort 

continues today to ensure that everyone with 

a disability has equitable access, reasonable 

accommodations, and the opportunity to fully 

participate in their community.

AI/AN people with disabilities 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 

and state, local, and nongovernmental entities 

to make communities and workplaces more 

accessible, caring, and representative of the 

beautiful, unique contributions everyone brings to 

this world.

Who comprises our community 

and what is the number of federally 

recognized tribes?

The Federal Government, through the Bureau of 

Indian Affairs (BIA), officially acknowledges 574 

“federally recognized” tribes and Alaska Native 

villages (U.S. Department of Interior).

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 9
What is the size of the American 

Indian and Alaska Native 

populations, and where do they live?

There are over 3.7 million Americans who 

identify exclusively as American Indian or 

Alaska Native according to the 2020 U.S. 

Census. Over 9.6 million Americans identify 

as American Indian or Alaska Native only or 

in combination with another ethnicity. This is 

a 159.5 percent increase over the 2010 U.S. 

Census and comprises 1.8 percent of the total 

U.S. population (U.S. Census Bureau).

The U.S. Bureau of Labor Statistics reports 

that most AI/ANs do not reside in AI/AN areas, 

which are defined as federal or state American 

Indian reservations or off-reservation trust lands, 

tribal statistical areas, or Alaska Native village 

statistical areas. In 2016-18,

■ 28% of the AI/AN population resided in 

AI/AN areas

■ 30% of AI/AN area residents were age 55 or 

older (2019)

What percentages of AI/ANs have 

a disability and by what age?

Data from the Centers for Disease Control and 

Prevention found that 30 percent of American 

Indian or Alaska Native adults have a disability, 

the highest rate of disability of any ethnicity.

Of the 3.7 million American Indian or Alaska 

Natives who identify exclusively as AI/AN on the 

2020 Census, 1.1 million have a disability (U.S. 

Census Bureau 2021).

In 2019, the U.S. Census Bureau estimated 

2.6 million U.S. households, or 4.3 percent, had 

at least one child in the home with a disability. 

In American Indian or Alaska Native homes, 

Race

Percentage 

with 

Disabilities

American Indian/Alaska Native 30%

Black 25%

White 20%

Native Hawaiian/Pacific Islander 16%

Hispanic 16%

Asian 10%

(Centers for Disease Control and Prevention 2020)

5.9 percent had a child with a disability, the 

highest disability rate of any ethnic or racial 

group (Young).

The U.S. Census Bureau’s Current 

Population Survey with a combined 2016 to 

2018 average found that younger AI/ANs were 

more likely to have a disability (16 percent) 

than the overall population (12 percent). 

Among AI/ANs 55 and older, 34 percent had 

a disability, compared with 23 percent for the 

overall population in the same age range (U.S. 

Bureau of Labor Statistics 2019).

What Is a Disability?

The term “disability” is defined by the 

Federal Government in various ways, 

depending on the context. For the purposes of federal disability nondiscrimination laws (such as the Americans with 

Disabilities Act (ADA), Section 503 of 

the Rehabilitation Act of 1973 and Section 188 of the Workforce Innovation and 

Opportunity Act), the definition of a person with a disability is typically defined 

as someone who (1) has a physical or 

mental impairment that substantially 

10 National Council on Disability/National Indian Council on Aging
limits one or more “major life activities,” 

(2) has a record of such an impairment, 

or (3) is regarded as having such an 

impairment.

For purposes of Social Security disability 

benefits, a person with a disability must 

have a severe disability (or combination of disabilities) that has lasted, or 

is expected to last, at least 12 months 

or result in death, and which prevents 

working at a “substantial gainful activity” level.

State Vocational Rehabilitation (VR) 

offices define a person with a disability 

to be eligible for VR services if he or she 

has a physical or mental impairment that 

constitutes or results in a “substantial 

impediment” to employment for the 

applicant.

U.S. Department of Labor, Office of 

Disability Employment Policy

While definitions vary, nearly all these 

definitions rely upon some measure of functional 

limitation. Assessing the severity of a disability is 

often done by totaling the number of Activities of 

Daily Living (ADL) and Instrumental Activities of 

Daily Living (NRCNAA 2002).

Activities of Daily Living:

■ Feeding

■ Walking

■ Toileting

■ Continence

■ Dressing

■ Bathing

■ Getting in/out of bed or a chair

Instrumental Activities of Daily Living (more 

complex activities that involve thinking and 

organizational skills):

■ Cleaning and housekeeping

■ Doing laundry

■ Managing money

■ Managing medications

■ Preparing meals

■ Shopping

■ Transportation use

■ Use of communication devices such as 

phones and computers

What Types of Disabilities are Found 

in Native Communities?

Every type of disability found in the general 

population is also found in the AI/AN population. 

Many people have hidden or unseen disabilities, 

such as emotional or mental health challenges, 

learning disabilities, substance use disorder, or 

deafness. People are born with their disability or 

acquire it early or later in life due to disease, age, 

or injury. If we live long enough, each of us will 

experience life with a disability.

Few datasets exist for American Indian people 

that provide a clear and accurate snapshot of the 

health status of the AI/AN population. A small study 

surveyed tribal communities to identify the most 

frequent types of disabilities in their communities 

(AIDLP 2000). Due to underrepresentation of AI/

ANs with disabilities in academic studies, more 

recent data is not available. However, the results of 

this small survey are likely still true.

■ Diabetes

■ Visual impairments, including blindness

■ Mobility disability, including Arthralgia

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 11
■ Hearing impairments, including deafness

■ Emotional or mental health issues

■ Disabilities affecting learning

■ Substance use disorder

The National Resource Center on Native 

American Aging conducted surveys of older adults 

and identified the top five chronic conditions of 

older adults 55 and older. Also, 41.1percent of 

Native Elders reported experiencing one or more 

falls in the past year.

High Blood Pressure 57.5

Arthritis 45.3

Diabetes 35.3

Cataracts 20.0

Depression 14.1

(National Resource Center on 

Native American Aging 2020)

A Minority Health Equity report, by the 

Centers for Disease Control and Prevention 

identified the five leading causes of death in male 

and female Native Americans aged 45 and older:

■ Heart disease (#1 in men; #2 in women)

■ Cancer (#1 in women; #2 in men)

■ Diabetes

■ Chronic liver disease

■ Chronic lower respiratory disease

■ Stroke (2017)

Federal Disability Laws and Tribes

People with disabilities living on tribal lands face 

a complex legal environment. 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.

People 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 1990 (42 U.S.C. §§ 12101 

et seq.), may face unique barriers when 

seeking enforcement or a remedy by a tribal 

government.

Government-to-Government 

Relationships

The United States has a unique legal and political 

relationship with Indian tribes and a special 

relationship with Alaska Native entities as 

provided in the Constitution of the United States, 

treaties, and federal statutes. These relationships 

extend to the Federal Government’s historic 

preservation activities, mandating that federal 

consultation with Native American tribes be 

meaningful, in good faith, and entered into on a 

government-to-government basis.

Architectural Barriers Act of 

1968 (ABA)

The ABA states that certain federal and federally 

funded buildings and other facilities are to be 

designed, constructed, or altered in accordance 

with standards that ensure accessibility to, and 

use by, physically handicapped people.

■ ABA Regulations in 24 CFR Part 41 do not 

apply to tribes (U.S. Department of Housing)

12 National Council on Disability/National Indian Council on Aging
Civil Rights Act of 1968

All persons shall be entitled to the full and equal 

enjoyment of the goods, services, facilities, 

privileges, advantages, and accommodations 

of any place of public accommodation without 

discrimination on the grounds of race, color, 

religion, or national origin.

■ Title II (Public Accommodations) applies 

to federally recognized tribes, including 

Tribally Designated Housing Entities 

(TDHEs)

■ Public Accommodations include places 

of lodging, restaurants, places of 

entertainment, public gathering spaces, and 

retail or other establishments that serve 

customers (U.S. Department of Justice)

Rehabilitation Act of 1973

The Rehabilitation Act prohibits discrimination 

based on disability in programs conducted by 

federal agencies, such as federal employment 

or any programs that receive federal funds. In 

determining employment discrimination, the 

Rehabilitation Act uses the same standards as 

Title I of the ADA.

■ Section 121 of the Rehabilitation Act

authorizes the Rehabilitation Services 

Administration to make grants to tribes for 

the purpose of Vocational Rehabilitation 

(VR) services. Tribes accepting these grants, 

and generally other federal funds, agree 

to comply with federal law. However, this 

agreement does not amount to a waiver of 

sovereign immunity, which protects tribes 

from lawsuits in federal court. As such, 

people with disabilities may have a right 

without a remedy.

■ Section 504 of the Rehabilitation Act and 

the U.S. Department of Housing and Urban 

Development’s implementation regulations in 

24 CFR Part 8 apply to any recipient of federal 

financial assistance, including tribes and tribal 

entities (U.S. Department of Housing).

Fair Housing Act of 1988

The Fair Housing Act prohibits discrimination 

in housing based on race, color, religion, sex, 

national origin, familial status, and disability.

■ The Federal Fair Housing Act and 

implementing regulations of NAHASDA in 

24 CFR Part 100 do not apply to Indian tribes 

and the TDHEs of those tribes engaged 

in NAHASDA-funded activities (U.S. 

Department of Housing).

Americans with Disabilities Act 

(ADA) of 1990

The ADA is a civil rights law that prohibits 

discrimination solely on the basis of disability 

in employment, public services, and 

accommodations. Tribal sovereignty makes the 

ADA largely inapplicable to tribal nations.

Title I of the ADA prohibits discrimination on 

the basis of disability in employment.

Tribal governments are categorically excluded 

as employers.

■ Title I requires employers with 15 or more 

employees to provide qualified people with a 

disability with an equal opportunity to benefit 

from the full range of employment benefits 

available to others. It restricts discrimination 

in hiring, promotions, pay, and other privileges 

of employment. Employers must make 

reasonable accommodation for the known 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 13
physical or mental limitations of otherwise 

qualified people with disabilities unless it 

results in an undue hardship to the employer.

● Private employers operating within 

reservations are not excluded as 

employers (Thorton 2019).

Title II of the ADA prohibits discrimination 

based on disability in state and local 

government.

Tribal governments are NOT specifically 

exempt from the provisions of Title II.

■ On June 22, 1999, the Supreme Court made 

a landmark ruling interpreting Title II of the 

ADA. The decision, Olmstead v. L.C. (527 

U.S. 581 (1999)), found that Title II of the 

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.

■ Title II of the ADA applies to tribes when 

receiving federal funds from agencies that 

have specific ADA regulations. For example, 

Title II of the ADA applies to Tribal Transit 

Programs funded by the Federal Transit 

Administration.

● The practical application of the Olmstead 

ruling is that states must help provide the 

least restrictive level of care for people 

with disabilities, moving away from 

institutionalization and toward home- and 

community-based care.

● Although Title II is not always applicable 

to tribes, it could present new 

opportunities for tribal governments to 

partner with states to develop homeand community-based services that 

are reimbursed by Medicaid or other 

sources of funding.

Title III of the ADA prohibits discrimination on 

the basis of disability in public accommodations.

Private people cannot sue a tribal nation for 

noncompliance (unless the tribe has expressly 

waived its sovereign immunity). Only the U.S. 

attorney general can bring a suit against a tribe to 

enforce the act.

■ Public accommodations include places 

of lodging, restaurants, places of 

entertainment, public gatherings, etc. are 

considered public accommodations if they 

affect interstate commerce.

■ In practical terms, tribal nations are immune 

to private Title III lawsuits (Thorton 2019).

■ The only legal remedy available would be for 

the U.S. Attorney General to compel tribal 

compliance, which has never happened.

Native American Housing Assistance 

and Self-Determination Act of 1996 

(NAHASDA)

Through the Department of Housing and Urban 

Development, funding is provided for two 

housing programs.

■ Indian Housing Block Grant, a formulabased grant to provide a range of affordable 

housing activities on Indian reservations and 

in Indian areas

■ Title VI Loan Guarantee, which provides 

financing guarantees to Indian tribes for 

private market loans to develop affordable 

housing

14 National Council on Disability/National Indian Council on Aging
Developmental Disabilities 

Assistance and Bill of Rights Act 

of 2000 (DD Act)

The DD Act assures that people with 

developmental disabilities and their families 

participate in:

■ The design of and have access to needed 

community services

■ Individualized supports

■ Other forms of assistance

The Developmental Disabilities Administration 

(DDA) partners with state and tribal governments 

and Indian organizations to deliver services 

and supports to eligible clients that promote 

self-determination, independence, productivity, 

integration, and inclusion in all facets of 

community life through culturally competent 

programs.

The Developmental Disabilities Administration 

is responsible for the implementation of the Act 

and funds five main programs:

■ State Councils on Developmental Disabilities

■ Protection and Advocacy Agencies

■ University Centers for Excellence in 

Developmental Disabilities

■ Family Support Programs

■ Projects of National Significance 

(Administration for Community Living)

Workforce Innovation and 

Opportunity Act of 2014 (WIOA)

On July 22, 2014, President Obama signed 

H.R. 803, the Workforce Innovation and 

Opportunity Act, commonly referred to as WIOA 

(pronounced as “wee oh uh”).

■ WIOA is designed to help job seekers 

access employment, education, training, 

and support services to succeed in the 

labor market and to match employers with 

the skilled workers they need to compete 

in the global economy (U.S. Department of 

Labor).

■ WIOA Programs

■ Adult and Dislocated Worker Program

● Funds are allocated to local Job/

Career centers for staff salaries, adult 

employment, and training activities. 

Priority is given to veterans, recipients 

of public assistance, low-income 

individuals, and individuals with basic 

skills deficiencies.

■ Indian and Native American Program

● Section 166 of WIOA provides grants to 

Native American programs to support 

employment and training activities 

to develop academic, occupational, 

and literacy skills consistent with the 

traditional cultural values and beliefs of 

the people they serve.

■ JobCorps

● A national residential career training 

program that helps eligible young 

people ages 16 through 24 to complete 

their high school education, train 

for meaningful careers, and obtain 

employment.

■ National Dislocated Worker Grants

● Section 170 of WIOA provides 

discretionary grants to state and other 

eligible applicants to respond to people 

who are laid off or experience other 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 15
significant job loss from such events 

as relocation of a military spouse or a 

natural disaster.

■ National Farmworker Jobs Program

● A nationally directed, locally administered 

program of services for migrant 

and seasonal farmworkers and their 

dependents. It provides equitable access 

to career services, skill development, 

workforce protections, and housing to 

some recipients.

■ Reentry Employment Opportunities 

Program

● Funding for justice-involved youth and 

young adults and adults who were 

formerly incarcerated. The purpose is 

to improve this population’s workforce 

outcomes.

■ Wagner-Peyser Employment Service

● Establishes a national employment service 

with states to provide employment 

services and unemployment insurance

■ WIOA Youth Program

● Provides an online learning destination 

for youth to learn about the workforce 

system

● Helps states and local job/career centers 

develop career pathways with leaders, 

practitioners, and policy makers

● Provides summer job opportunities

● Assists youth who are not enrolled in 

school or have basic skills deficiencies 

receive education, training, and services 

to support their career pathway goals

■ YouthBuild

● A community-based pre-apprenticeship 

program that provides job training and 

educational opportunities for at-risk youth 

ages 16 through 24 who have previously 

dropped out of high school (U.S. 

Department of Labor)

Supporting Older Americans 

Act of 2020 (OAA)

OAA was originally authorized in 1965 and 

provides the organization and delivery of social 

and nutrition services to older adults and their 

caregivers. It authorizes a wide array of service 

programs through a national network of 56 

state agencies on aging, 618 area agencies 

on aging, nearly 20,000 service providers, 281 

tribal organizations, and one Native Hawaiian 

organization representing 400 tribes.

■ The OAA also includes community service 

employment for low-income older Americans; 

training, research, and demonstration 

activities in the field of aging; and vulnerable 

elder rights protection activities

■ The 2020 reauthorization aims to remove 

barriers to the aging network and increase 

capacity and flexibility in the allocation of 

services (Administration for Community 

Living)

Common Barriers

Attitude: Many nondisabled people often see 

a disability and not the person’s gifts, potential, 

and value. You can help change this! As most 

tribes recognize, there is power in storytelling 

to create unity, dismantle barriers, bring healing, 

and inspire hope. To change attitudes, model 

respect and kindness and ask others about their 

experiences.

16 National Council on Disability/National Indian Council on Aging
Lack of Awareness: There is a shortage 

of information about the number of American 

Indian/Alaska Natives with disabilities, types of 

disabilities in Indian communities, and the myriad 

of opportunities and service programs available 

to tribal governments to better protect and assist 

their members with disabilities.

Legal Enforcement Unclear: Federal laws 

designed to protect people with disabilities are 

not always enforceable in Indian Country due to 

the sovereign status of tribes. However, not all 

enterprises located on tribal lands are exempt 

from federal laws. Many tribes have adopted 

their own disability rights ordinances and codes 

to protect their members with disabilities. 

The allocation of resources for people with 

disabilities and enforcement of these ordinances 

varies by tribe and the jurisdiction that oversees 

enforcement is most often the tribe and not the 

Federal Government.

Rural Transportation: Most tribal lands are 

in remote rural areas of the United States and 

either lack public transportation systems or 

have inadequate transportation infrastructure. 

These conditions make it very difficult for tribal 

community residents to travel to hospitals, 

stores, schools, and employment centers. 

Transportation improvements increase the 

independence of people with disabilities.

Rural Infrastructure: Tribal communities may 

not have the infrastructure to support access 

and accommodation for people with disabilities, 

such as sidewalks and sidewalk ramps for 

wheelchair access. Tribal communities may lack 

access to high-speed Internet or the means to 

acquire assistive technology for people with 

disabilities. In 2022, federal infrastructure funds are 

available to tribes to provide or expand broadband 

Internet service and improve water systems.

Public Access: Tribal office buildings that 

serve their community are not always accessible 

for people with disabilities because some tribes 

lack the resources to retrofit their buildings to 

accommodate people with disabilities.

Complex Federal Programs: A variety of 

federal and state programs provide important 

resources for people with disabilities on tribal 

lands, but they can be difficult to navigate. Due to 

overlapping or conflicting responsibilities of the 

federal, state, and/or tribal programs, one must 

be determined and be assertive in accessing 

information and resources.

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 the resources and 

services of state programs.

Education Systems: The majority of AI/

AN children are educated through the public 

school system of their state. A small number 

of American Indian/Alaska Native children are 

educated in tribally operated schools or Bureau 

of Indian Education (BIE) schools. The Individuals 

with Disabilities Education Act (IDEA) requires 

all schools receiving federal funding, including 

public, grant, BIE, and private schools to provide 

children with disabilities a free appropriate 

education based upon the Individualized 

Education Program of each child. Parents of AI/

AN children with disabilities may not be aware 

of the rights, services, and supports their 

children are entitled to by IDEA. Every state has 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 17
one or more Parent and Community Resource 

Centers to support parents in advocating for 

their child’s educational rights under IDEA. 

(See the “Resources” link in the Education 

chapter for a list of Parent and Community 

Resource Centers.)

Employment: Federally recognized Indian 

tribes are specifically exempt as employers under 

Title I of the ADA, which prohibits discrimination 

against qualified people with disabilities in 

employment and requires that employers make 

reasonable accommodation for employees with 

disabilities (42 U.S.C. §§ 12101 et seq.). This 

exemption is a barrier for Indians with disabilities 

in Indian Country, particularly in rural areas where 

tribal governments are the largest employer. 

Some tribal governments have voluntarily 

complied with ADA or adopted their own 

codes to protect people with disabilities from 

employment discrimination.

Housing: Homes are not generally 

designed to meet the needs of people with 

disabilities. There may be limited funding 

at the tribal level to retrofit tribal or private 

housing. This housing barrier can mean the 

difference between a person with disabilities 

living independently or living under the care 

of others. Accessibility may mean ramps to 

doorways, 32-inch-wide doorways, and lower 

light switches and countertops. At a minimum, 

every home should be “visitable,” meaning 

the home can be lived in or visited by people 

who have difficulty with steps and use canes, 

wheelchairs, or walkers.

Service Coordination and Advocacy:

Tribal communities do not always have a 

central location where services for people with 

disabilities are coordinated. Often people have 

multiple needs, such as housing, employment, 

medical care, and advocacy. The lack of 

centralized coordination results in multiple trips, 

extra time, expense, and frustration for AI/AN 

people with disabilities.

Personal Care Assistance: Getting out of 

bed, bathing, dressing, and leaving the house 

can present major barriers for some people 

with disabilities. Yet, the support of a personal 

care attendant enables AI/ANs with disabilities 

to participate in their community, including 

education, social events, and the workforce. 

Home- and community-based services can 

facilitate much greater independence for AI/ANs 

with disabilities.

Historical Trauma and Healing

Historical Trauma in AI/AN Communities

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 

18 National Council on Disability/National Indian Council on Aging
factors, cultural influences, civil rights 

issues, and the effect of race/ethnicity is 

difficult for any health condition, particularly mental health disorders.

Vernellia Randall

What Is Historical Trauma?

Historical Trauma is the collective emotional wounding across generations that 

results from mass cataclysmic events—

Historically Traumatic Events (THE). The 

trauma is held personally and transmitted over generations. Thus, even family 

members who have not directly experienced the trauma can feel the effects of 

the event generations later.

Donald Warne

In 1492, the entirety of the current United 

States was five million and 100 percent 

indigenous. By 1900, there were 200,000 

American Indians in the current U.S. (Warne 

2019). American Indians were killed through 

colonization, warfare, intentional spread of 

disease, and forced removal from homelands 

and to boarding schools. Survivors experienced 

a significant pattern of loss.

■ Loss of life

■ Loss of population

■ Loss of land

■ Loss of culture

■ Loss of language

■ Loss of traditional parenting structures

■ Loss of resources

Ongoing wars, the Trail of Tears, boarding 

schools, bounties paid for dead American Indians, 

broken treaties, and the death/disappearance of 

loved ones leaves a biological-psychological-social 

response. Today’s poverty in Indian Country is 

rooted in the theft of our land.

The long-term impacts of genocide cause 

anger and depression and is passed from one 

generation to the next, which results in stark 

health disparities. As such, the average age of 

death in North Dakota is:

■ 54.7 years for American Indians

■ 75.7 years for Whites (North Dakota 

Department of Health 2017)

This massive trauma expresses itself 

today in the form of high rates of substance use disorder, violence, alcoholism, 

and sexual abuse within Native families 

and communities. Many accounts suggest that the boarding school generations 

were permanently scarred by their experiences of physical, mental, and sexual 

abuse in the school system. When these 

Native children returned to their homes 

and families, having lost their culture 

and identity, and began to have families 

of their own, they were unable to form 

healthy bonds and passed on these patterns of abuse to their own children, creating cycles of broken families.

Native Hope

The responses to historical trauma were first 

documented by Dr. Brave Heart and include:

Survivor guilt; Depression; PTSD; Psychic 

numbing; Fixation to trauma; Somatic 

(physical) symptoms; Low self-esteem; 

Victim identity; Anger; Self-destructive 

behavior including substance abuse; 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 19
Suicidal ideation; Hypervigilant; Intense fear; 

Disassociation; Compensatory fantasies; 

Poor affect (emotion) tolerance

Culturally Relevant/Healing-Informed 

Care

She Who Heals

Mother, sing me a song

That will ease my pain,

Mend broken bones,

Bring wholeness again.

Catch my babies

When they are born,

Sing my death song,

Teach me how to mourn.

Show me the Medicine

Of the healing herbs,

The value of spirit,

The way I can serve.

Mother, heal my heart

So that I can see

The gifts of yours

That can live through me. 

An American Indian Healing Prayer

(QuotesGram)

The Substance Abuse and Mental Health 

Administration’s handout on Healing-Informed 

Care for tribal communities outlines the 

characteristics of indigenous ways of knowing 

that are important in healing.

Holistic – Interconnectedness underlies all of 

human experience.

Balance – Because of the interdependencies 

of all life, achieving and maintaining balance is 

important both to the individual and the larger 

group.

Moral Code – The physical and metaphysical 

worlds are linked to a moral code.

Respect – Respect of all living things and each 

other is essential for balance.

Healing has been defined as “transition 

toward meaning, wholeness, connectedness, 

and balance (U.S. Health and Human Services 

2015, P. 9).

Menominee Example

The Menominee Tribe implements several 

culturally relevant approaches.

For example, pregnancy is seen as a sacred 

state of being, and keeping women and babies 

safe and healthy is considered part of an 

honorable way of life.

■ These values are affirmed by teaching 

high school students the Menominee 

Grandfather Teachings (wisdom, love, 

respect, bravery, honesty, humility, and 

truth), and providing girls with culturally 

relevant reproductive health and support 

services.

● Since these efforts were undertaken, 

annual births among girls aged 15-17 

have dropped from a high of 20 in 2008 

to fewer than 5.

Similarly, a local coalition called Maehnow 

Pematesen, which means “living in a good way,” 

has worked to reinforce traditional values among 

youth and to establish drug-free cultural events, 

such as an annual sobriety powwow.

■ Over the past decade, rates of substance 

abuse among high school students have 

declined, including use of marijuana (30%), 

cigarettes (49%), and alcohol (64%).

20 National Council on Disability/National Indian Council on Aging
Benefits of Culturally Informed Prevention Programs

Cultural Practices Benefits

Language classes ■ Informs the cultural worldview, ways of knowing, knowledge systems, 

values, and practices

■ Connects tribal members to each other and their culture

■ Unlocks the worldview, values, and teachings

Smudging 

(purification)

■ Provides a feeling of the sacred and safety

■ Focuses attention and intention

■ Helps turn thinking from negative to positive

Ceremonies and 

ritual

■ Gets tribal members in touch with a sense of spiritual connection

■ Focuses the mind, heart, and body on healing

■ Communicates a message of personal responsibility, “You have 

something to do.

■ Reminder that healing is relational and takes place in one’s community

Stories and 

artwork

■ Illustrates and clarifies values

■ Connects people to each other and to place

■ Conveys culturally specific values, including high expectations, caring, 

support, and opportunities for participation

Talking circles ■ Promotes belonging

■ Provides a safe and healthy way to resolve conflict

■ Encourages community

Gift giving 

(generosity)

■ Demonstrates and solidifies connectedness

■ Shows respect for the giver and recipient

Visiting ■ Encourages people to tell their stories and to connect with each other

■ Helps release internalized pain

■ May help show the connection between thought and feeling

■ Helps people get in touch with their purpose

Subsistence/

culture camps

■ Teaches AI/AN values

■ Contributes to belonging and a sense of self worth

Respect of elders ■ Teaches indigenous values

■ Contributes to belonging and a sense of self worth

■ Provides support

Fun walks/runs ■ Addresses the physical component of wellness

■ Brings the community together

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 21
Cultural Practices Benefits

Powwows ■ Connects tribal members to each other and their culture

■ Conveys cultural values, including high expectations, caring, support, 

and opportunities for participation

Regalia, arts, and 

craft making

■ Connects tribal members to each other and their culture

■ Provides opportunities for hands-on learners to connect to their culture

(U.S. Health and Human Services 2015, 9)

Examples of Cultural Healing Practices

Cultural healing practices vary from tribe to 

tribe and village to village. However, there are 

commonalities among the practices.

Mental Health, Substance Misuse, 

and Suicide in Indian Country

The statistics on the prevalence of mental 

illness, substance misuse, and suicide in Indian 

Country is stark. A 2018 National Survey on Drug 

Use and Health: American Indians and Alaska 

Natives conducted by the U.S. Health and Human 

Services with the Substance Abuse and Mental 

Health Services Administration found:

■ 1 in 11 AI/ANs with a substance use disorder

■ 5.3% of AN/ANs older than 18 had both a 

substance use disorder and a mental illness

■ 22.1% of AI/ANs had a mental illness 

(SAMHSA, slide 17)

■ Nearly 25% of Native Americans reported 

binge drinking in the past month.

The rate of substance dependence or abuse 

is higher among Native Americans than any 

other population group in the country. Native 

Americans have the highest methamphetamine 

abuse rates, including past month use at more 

than three times the rate of any other group. They 

are more likely to report drug abuse in the past 

month (17.4%) or year (28.5%) than any other 

ethnic group (American Addiction Center).

Statistics on the suicide and death rates of 

young American Indian/Alaska Natives are grim.

■ In 2019, suicide was the 2nd leading cause of 

death for AI/ANs ages of 10–34.

■ AI/ANs are 60 percent more likely to 

experience the feeling that everything is an 

effort, all or most of the time, as compared 

to non-Hispanic whites.

■ The AI/AN suicide rate is 20 percent higher 

than the non-Hispanic white population.

■ In 2019, the death rate of adolescent AI/AN 

females, ages 15–19, was five times higher 

than non-Hispanic white females in the 

same age group.

■ In 2018, the death rate of AI/AN males, ages 

15–24, two times that of non-Hispanic white 

males in the same age group (CDC).

There are many programs in recent years 

that were developed or adapted based on tribal 

culture and traditions to address these health and 

wellness disparities.

The Substance Abuse and Mental Health 

Services Administration’s (SAMHSA) Tribal 

Training and Technical Assistant Center developed 

a cultural framework for healing mental health, 

substance use, and suicide prevention in 

22 National Council on Disability/National Indian Council on Aging
Indian Country. The three cornerstones of the 

framework are:

■ Balance – Illness is seen as being out of 

balance; some part of the whole is not in 

balance with the rest of the whole. To heal, 

all four aspects of an individual should be 

considered and should be in balance—

mental, emotional, spiritual, and physical.

■ Relational – All things are interconnected. 

Health is holistic, but also communal. If an 

individual is unwell, the family, community, 

and future generations are affected. By the 

same token, the effects of a healthy person 

will also ripple through the community.

■ Strengths-based – The indigenous worldview 

assumes that all people have innate 

strengths they bring when facing adversity. 

Healing-informed care recognizes this belief 

and helps people and communities express 

these strengths.

In the Resources section of this chapter’s 

toolkit are two publications from SAMHSA 

that describe many culturally informed 

programs that reduce substance misuse and 

promote mental health in American Indian and 

Alaska Native populations. What follows are 

summaries of just a few of these prevention 

programs.

Culturally Informed Programs

The Peacemaker taught us about the 

Seven Generations. He said, when 

you sit in council for the welfare of the 

people, you must not think of yourself 

or of your family, not even of your generation. He said, make your decisions 

on behalf of the seven generations 

coming, so that they may enjoy what 

you have today.

Oren Lyons (Seneca) Faithkeeper, 

Onondaga Nation

American Indian (AI)/Alaska Native (AN) 

communities represent strength and 

resilience within a history of attempted 

genocide, cultural assault, and ongoing 

systemic oppression. . . . A system of 

care that includes indigenous community mental health workers in addition 

to Native psychologists, psychiatrists, 

and other mental health professionals 

has great potential in improving overall 

wellness and restoring balance in Indian 

Country.

O’Keefe et al. 2021

American Indian and Alaska Native 

Mental Health Workers

Most tribal members say they prefer to see 

a Native health provider. AI/AN mental health 

workers are such a solution because they:

■ Hold local tribal understandings of history, 

culture, health, and wellness

■ Increase the number of local mental health 

practitioners, which removes the barriers 

that include travel time, wait time, and 

access to care

■ Enable tribes to expand and improve service

■ Help people to restore balance, wellness, 

and connection to the tribe’s resilience

AI/AN mental health workers receive training 

in evidence-based practices and provide patient 

navigation, case management, culturally appropriate 

psychoeducation, and access to local cultural 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 23
resources. Although AI/AN beliefs and practices 

vary by tribe, local cultural resources may include:

■ Prayer

■ Ceremony

■ Storytelling

■ Art and movement

■ Healing and Talking Circles

■ Interactions with a traditional healer

■ Daily practices to sustain balance and 

wellness

(O’Keefe 2021)

Examples of Culturally Informed Adult 

Programs for Mental Health, Substance 

Misuse, and Suicide Prevention

Holistic System of Care (HSOC) 

for Native Americans in Urban 

Environments

Developed by the Family and Child Guidance 

Clinic of the Native American Health Center, San 

Francisco, CA.

■ A flexible framework that encourages the 

combination of evidence-based practices 

and practice-based evidence, such as:

● Gathering of Native Americans

● Positive Indian Parenting

● Intertribal AI/AN cultural practices

■ Talking circles, sweat lodge 

ceremonies, traditional healers, prayer, 

smudging, drumming, and herbs

■ Counselors’ aid individuals to develop skills 

and use healing practices based on their 

own individual backgrounds, traditions, 

practices, and stories.

Circles of Care

Circles of Care is a grant provided by the 

Substance Abuse and Mental Health Services 

Administration (SAMHSA), and their resources 

are helpful and available to any tribal or urban 

Indian community seeking to design, enhance, 

or expand a comprehensive, holistic, evidenceand community-based, coordinated system of 

care to support mental health for children, youth, 

families, and caregivers.

The Circles of Care grant program goals are to:

■ Develop a community-based system of 

care model for children with mental health 

challenges and their families

■ Develop local capacity, infrastructure, and 

resources to implement the system of 

care model to improve the mental health 

and wellness of their tribal cosmmunity’s 

children, youth, and families (SAMHSA)

Website: https://www.samhsa.gov/tribal-ttac/

circles-care

Examples of Culturally Informed 

Youth Programs for Mental Health, 

Substance Misuse, and Suicide 

Prevention

American Indian Life Skills (AILS) 

Development is the current version of the 

former Zuni Life Skills Development program.

1. It is a school-based suicide prevention 

curriculum that aims to reduce suicide risk 

factors and increase protective factors 

among American Indian youth.

2. The curriculum integrates commonly shared 

Native American beliefs and topics into a life 

skills program.

24 National Council on Disability/National Indian Council on Aging
3. Recommends places where individual tribal 

beliefs, practices, culture, and language can 

be added for customization

4. Students participate in culturally relevant 

experiential learning exercises on self-esteem, 

emotions and stress, communication, problemsolving skills, self-destructive behavior, suicide, 

and personal and community goals.

5. 60 individual sessions, two to three times a 

week over 20–30 weeks

6. Curriculum is delivered by teachers and 

tribal community leaders.

Website: https://sprc.org/resources-programs/

american-indian-life-skills-developmentzuni-lifeskills-development

The AILS curriculum is sold on Amazon.

com. Enter “American Indian Life Skills” into the 

Amazon search box or visit: https://www.amazon.

com/American-Indian-Skills-DevelopmentCurriculum/dp/0299149242

Culture Forward: A Strengths- and 

Culture-Based Tool to Protect Our 

Native Youth from Suicide

1. Developed by Casey Family Programs and 

the Johns Hopkins Center for American 

Indian Health.

2. Two years were spent:

a. listening to Native voices from across 

Indian Country

b. Scanning indigenous literature to gather 

tribally driven, evidence- and practicebased solutions to prevent youth suicide.

3. Five Core Themes

a. Our Networks harness belonging and 

help keep us safe.

b. Connection to our lands & elders allows 

us to thrive.

c. Traditional knowledge holds the key to 

health and healing.

d. Native Youth lead us to reclaim our 

autonomy and well-being.

e. Self-determination empowers us to fight.

(Center for American Indian Health)

Website: https://caih.jhu.edu/programs/

cultureforward

The Healing of the Canoe Project 

(Squamish Tribe, Port Gamble 

S’Klallam Tribe)

A substance misuse reduction and suicide 

prevention program designed for high school 

students. It is a Culturally Grounded Life Skills 

for Youth Curriculum. The program uses a Canoe 

Journey as the metaphor, providing youth the 

skills needed to:

■ Navigate their journey through life without 

being pulled off course by alcohol or drugs

● The canoe is a vessel for travel, 

ceremonies, transportation of food and 

resources, and subsistence activities.

■ Understand how tribal culture, tradition, and 

values serve as a compass to guide, anchor, 

and ground tribal youth

■ The curriculum is steeped in traditional tribal 

values and practices.

■ Teachings impart knowledge about the 

community, managing emotions, solving 

problems, communicating, and is inclusive 

for LGBTQ/two-spirit peoples.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 25
The curriculum can be customized by tribes and 

be delivered in a weekend or yearlong program. In 

2013, 50 tribes and 19 tribal organizations adapted 

and implemented the curriculum.

Website: https://healingofthecanoe.org/

Curriculum: https://www.healthynativeyouth

.org/curricula/healing-of-the-canoe/

Family Spirit

A home-visiting mental health promotion and 

substance abuse prevention intervention for 

American Indian teenage mothers that aims to 

increase:

■ Parenting competence and reduce risk 

factors

■ Healthy infant and toddler behaviors

Lessons are provided on prenatal care, 

infant care, breast feeding, child development, 

family planning, and healthy living. Native 

paraprofessionals visit the home and build on 

connection to the community and local culture 

(Prevention Solutions@Education Development 

Center).

Website: https://caih.jhu.edu/programs/

family-spirit

Pandemics and COVID-19

According to the Centers for Disease Control 

and Prevention (CDC), a pandemic is defined 

as an event in which a disease is spread across 

several countries and affects a large number of 

people. Pandemics are often caused by influenza 

or a virus as we saw in 2020 with Coronavirus 

(COVID-19).

Because of health inequities rooted in social 

determinants of health, such as colonization, 

systemic racism, higher rates of poverty, and 

unequal access to education and health care, the 

COVID-19 pandemic disproportionately affected 

American Indian and Alaska Native populations 

compared to non-Hispanic whites.

■ Infection rates were 3.5 times higher

■ Hospitalization was 4 times higher

■ Higher rates of death and at younger ages 

(Indian Health Service)

During a pandemic and natural disasters, we 

all need to follow our tribal, town/city, and state 

directives. You can also contact your state’s 

Developmental Disability Administration, Disability 

Council, or Independent Living Council for 

availability and assistance in obtaining resources.

An Example of a Culturally Relevant 

Covid-19 Response

The protective factors for health in AI/AN 

communities were disrupted by COVID-19 due to 

social isolation and disconnection from seasonal 

cultural activities, ceremonies, and social 

gatherings.

Based on needs assessments conducted 

with tribal partners, the John Hopkins Center for 

American Indian Health Great Lakes Hub sent 

holistic wellness boxes to 11 tribal communities in 

the Midwestern U.S. and Canada in the summer 

of 2020. The wellness boxes were culturally 

relevant and based on the needs voiced by 

indigenous community partners (Aulandez et al.).

The voices of people most affected should 

be the foremost authority on their own needs 

and the Holistic Wellness Boxes is one example 

of respectful bi-directional communication 

that honored and acted on the needs of AI/AN 

community members.

26 National Council on Disability/National Indian Council on Aging
Type of Resource Content of Holistic Wellness Boxes

Resources to 

bring calm, 

relieve stress, and 

strengthen cultural 

connection

■ Sage for smudging

● Traditional practice that provides protective physical and mental health

■ Ribbon featuring Ojibwe floral designs

● For use in making traditional crafts

■ Lavender essential oil (studies have found it to lessen anxiety 

symptoms and improve sleep)

■ Ojibwe Elder’s teachings about self-care and dealing with anxiety and 

stress

● Available in audio and on printed cards

● Cross-generational sharing of knowledge fosters resilience and 

promotes health

■ Mental health resource list

■ Mindfulness exercises

● Studies show mindfulness correlates to lower stress levels

Resources to 

nourish body and 

spirit

■ Wild rice

● A diet based on traditional foods is protective against diet-related 

diseases among AI/AN populations

■ Recipes using traditional foods

● To promote nutritional health during a time of food insecurity

Resources to 

support the mental 

and physical 

health of children

■ Storybook, “Our Smallest Warriors, Our Strongest Medicine: Honoring 

Our Teachings During Covid 19!” available at https://cih.jhu.ed

programs/our-smallest-warriors-our-strongest-medicine-honoring-ourteachings-during-covid-19

● Adapted from My Hero is You: how kids can fight COVID-19!

● Adapted by indigenous and non-indigenous allied experts in child 

development, mental health, and health communication 

■ Minwanjige, Mino-bimaadizi

● Activity books that integrate the Ojibwe language and culture 

teducate children about healthy eating 

■ Crayons

Resources to 

prevent the spread 

of COVID-19

■ Cloth mask

■ Bar soap and/or hand sanitizer

(Aulandez et al.)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 27
Resources About Trauma & Culturally Informed Care

Who What Website/Contact Info

Dr. Maria Yellow 

Horse Brave Heart

An Oglala Lakota member who is 

recognized as the first person to develop 

the theory of historical trauma

One hour keynote speech at 

the conference of the Center 

for Trauma and Resilience

https://www.youtube.co

watch?v=ycQJ8ckwYaU

National Indian 

Child Welfare 

Association

Dedicated to the safety, health, and 

spiritual strength of American Indian and 

Alaska Native children

Holds an annual conference, provides 

ongoing training, and public policy 

advocacy

https://www.nicwa.or

National Native 

Children’s Trauma 

Center

Co-facilitates trauma-focused healing for 

Native children, families, and communities 

by honoring tribal sovereignty, specific 

community needs, and the use of 

traditional healing practices

Website: https://www.nnctc.or

Native Hope An AI/AN Youth leadership, education, and 

advocacy organization

https://www.nativehope.or

Resources For Mental Health, Substance Misuse, And Suicide Prevention

Who What Website/Contact Info

Adolescent Suicide 

Prevention Program 

Manual: A Public 

Health Model for 

Native American 

Communities

The manual was based on 

the principles of community 

involvement, ownership, the 

importance of culture and 

public health approaches

https://www.sprc.org/sites/defaul

files/migrate/library/AdolescentSP_

ProgramManuaPH_ModelNA_

Communities.pd

American Indian Life 

Skills (AILS) curriculum

A curriculum to reduce suicide 

risk factors and increase 

protective factors among 

American Indian youth

https://sprc.org/resources-programs

american-indian-life-skillsdevelopmentzuni-life-skillsdevelopment

The curriculum is also sold on 

Amazon.co

Culture Card:

A Guide to Build 

Cultural Awareness

(AI/AN)

Four-page flyer

with 13 topics such as

Tribal sovereignty, cultural 

customs, spirituality, 

communication styles, 

etiquette dos and don’ts, etc

Published by SAMHSA

(Substance Abuse and Mental Health 

Services Administration)

https://store.samhsa.gov/sites/defaul

files/d7/priv/sma08-4354.pd

28 National Council on Disability/National Indian Council on Aging
Who What Website/Contact Info

Family Spirit A home-visiting mental health 

promotion and substance 

abuse prevention intervention 

for American Indian teenage 

mothers

https://caih.jhu.edu/program

family-spirit

National American 

Indian and Alaska 

Native Addiction 

Technology Transfer 

Center Network

A National Center on 

addiction and mental health 

treatments. Provides training,

education, resources, and 

more

Native Center for Behavioral Health

University of Iowa

College of Public Health

145 North Riverside Drive, N410 

CPHB

Iowa City, IA 52246

(319) 471-2921

native@attcnetwork.or

Website: https://attcnetwork.org

centers/content/national-americanindian-and-alaska-native-attc

National American 

Indian and Alaska 

Native Mental Health 

Technology Transfer 

Center Network

Circles of Care

Step-by-Step Implementation 

Guide

https://mhttcnetwork.org/centers

national-american-indian-andalaska-native-mhttc/circles-careresources

National American 

Indian and Alaska 

Native Mental Health 

Technology Transfer 

Center Network

Mental Health Evidence-Based 

Practices for American Indian 

and Alaska Native Schools 

and Communities

(November 2019)

https://mhttcnetwork.org/sites

default/files/2020-02/NAIAN_MHTTC_

EnvScan.1.28.2020

Prevention Solutions 

@Education 

Development Center

“Culturally-Informed 

Programs to Reduce 

Substance Misuse and 

Promote Mental Health in 

American Indian and Alaska 

Native Populations”

https://preventionsolutions.ed

org/sites/default/files/attachments/

Culturally-Informed-Programsto-Reduce-Substance-Misuseand-Promote-Mental-Health-inAmerican-Indian-and-Alaska-NativePopulations_0.pd

Resource Guide: 

Promising Programs 

in Native American 

Communities

Created by the Montana 

Healthcare Foundation 

to help tribes’ plan for 

implementation of Tier 1 & 

2 Medicaid Tribal Health 

Improvement Programs

http://mthcf.org/wp-content/uploads

THIP-Resource-Guide_WEB.pd

SAMHSA’s Center 

for the Application 

of Prevention 

Technologies: Cultural 

Approaches to 

Prevention

“Culturally-Informed 

Programs to Reduce 

Substance Misuse and 

Promote Mental Health in AI/

AN Populations”

(March 2018)

https://theathenaforum.org/sites

default/files/public/cultural_

approaches_programs_march2018_

interactive_1.pd

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 29
Who What Website/Contact Info

Substance Abuse and 

Mental Health Tribal 

Training and Technical 

Assistance Center 

(TTA)

TTA on mental and substance 

use disorders, suicide 

prevention, and mental health 

promotion using the Strategic 

Cultural Framework

https://www.samhsa.gov/tribal-tt

Suicide Prevention 

Resource Center

Manual on Adolescent Suicide 

Prevention Program for Native 

American Communities (2011)

https://www.sprc.org/resourcesprograms/adolescent-suicideprevention-program-manu

The Understanding Disabilities Toolkit was created to provide people with disabilities, tribes, and 

allies with information and resources that empower people with disabilities to be full participants in 

their community and experience meaning, dignity, and control over their lives. What you will find in this 

book are tools on the journey towards that goal.

30 National Council on Disability/National Indian Council on Aging
Chapter 2: Health Care and Federal 

Health Insurance Programs

“One of my efforts is to address the stigma associated with 

disability and not to be afraid, not to be ashamed, but to be free, 

and to be vocal about what is impacting us, and how do we see a 

remedy being provided, with our voice being included.”

Dr. Kimberly Yellow Robe, Advocate

Health Care and Federal Health 

Insurance Programs

T

oday’s model of health and wellness 

integrates the mind, body, spirit, and 

context of the individual. This is similar 

to many Native American cultures, which 

emphasize harmony between mind, body, 

spirit, physical environment, and surrounding 

community.

Wellness spans a lifetime and a continuum 

that is unique to each individual’s culture, 

community, family, social networks, history, and 

physical environment. Numerous factors can 

impact a person’s health and wellness, such as:

■ Self-care

■ Health care management, including 

medications and pain

■ Physical functionality

■ Mental health, including historical trauma

■ Age

■ Attitudes and beliefs

■ Sexuality

■ Identity

■ Employment

■ Education

■ Social support

■ Accessibility accommodations

■ Personal assistant services

■ Housing

■ Transportation

■ Location and access to services

■ Self-advocacy skills

■ Others’ knowledge and sensitivity

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 31
Many health and wellness programs exist 

and can be combined with each other to provide 

a variety of services most beneficial for the 

patient. The major health and insurance programs 

available to AI/AN people are listed below.

Indian Health Services

The U.S. Federal Government provides health care 

services to AI/AN people through Indian Health 

Services (IHS), an agency within the Department 

of Health and Human Services. IHS is the primary 

health care provider and advocate for AI/AN 

people. Its goal is to raise their patients’ health 

status as much as possible, but adequate funding 

has been and continues to be a challenge, resulting 

in the rationing of services at the local level.

IHS comprises 12 regional Area Offices that 

administer local Service Units that coordinate 

health services for tribal beneficiaries. There are 

over 170 Individual Service Units, and they link 

the addresses and contact information of each 

Service Unit facility.

https://www.ihs.gov/locations/

The IHS has agreements with approximately 

246 tribal organizations to provide some 

healthcare services while IHS provides other 

services.

There are no “guaranteed benefits” for IHS 

patients. Services vary at each IHS/tribal clinic, 

health station, or hospital. Check with your 

local IHS or Tribal Health Program to know what 

services are available. Services can 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

IHS Eligibility

Individuals are eligible for IHS services if they 

are of American Indian and/or Alaska Native 

(AI/AN) descent and belong to the Indian 

community served by the IHS program, as 

evidenced by such factors as:

1. Membership, enrolled or otherwise, in an 

AI/AN federally recognized tribe or group 

under federal supervision

2. Residence on tax-exempt land or owning 

restricted property

3. Actively participates in tribal affairs

4. Any other reasonable factor indicative of 

Indian descent

5. In case of doubt that an individual applying 

for care is within the scope of the program, 

as established in 42 C.F.R. § 136.12(b), 

and the applicant’s condition is such 

that immediate care and treatment are 

necessary, services shall be provided 

pending identification as an Indian 

beneficiary (Indian Health Service, Indian 

Health Manual).

Some non-Indians are eligible for IHS services. 

Please click on the Indian Health Manual link under 

Healthcare Resources. https://www.ihs.gov/ihm/

pc/part-2/p2c1/-2-1.2A

Direct Care

Medical care and dental care provided at an IHS or 

Tribal Health Program facility is called direct care.

32 National Council on Disability/National Indian Council on Aging
Purchased/Referred Care (PRC)

The PRC Program is for medical/dental 

care provided away from an IHS or tribal 

health care facility. PRC is not an entitlement program and an IHS referral does 

not imply the care will be paid for by IHS. 

If IHS is requested to pay, then a patient 

must meet the residency requirements, 

notification requirements, medical priority, 

and use of alternate resources (Indian 

Health Service, Purchased/Referred Care).

With referral situations, the private health 

care provider or hospital will bill IHS for services 

to the patient. Due to limited funding, eligibility 

requirements for PRC are stricter than for services 

provided at an IHS or Tribal Health Program facility.

■ Prior approval from the IHS or tribal clinic is 

required for each PRC eligible service visit.

■ Close coordination with the IHS or tribal clinic 

is required to effectively utilize PRC services.

Each person who needs and applies for PRC 

assistance should be aware of the five eligibility 

requirements:

1. Is of American Indian and/or Alaska Native 

descent as evidenced by one or more of 

the factors:

a. An individual must be of Indian descent

and belong to the Indian community, 

which may be verified by tribal 

descendency or census number. An 

individual must be a member, enrolled or 

otherwise, or an Indian or Alaska Native 

tribe or Group under Federal supervision.

b. Any other reasonable factor indicative of 

Indian descent; or

i. Is an Indian of Canadian or Mexican 

origin recognized by any Indian tribe 

or group as a member of an Indian 

community served by the Indian 

Health program; or

ii. Is a non-Indian woman pregnant 

with an eligible Indian’s child for the 

duration of her pregnancy through 

post-partum (usually six weeks); or

iii. Is a non-Indian member of an eligible 

Indian’s household and the medical 

officer in charge of the services 

necessary to control a public health 

hazard or an acute infectious disease 

which constitutes a public health hazard.

2. An individual resides within his/her tribal 

Purchased/Referred Care (PRC) delivery area. 

The tribal PRC delivery area encompasses 

the reservation, trust land, and the counties 

that border the reservation. This could include 

an individual who resides on tax-exempt land 

or owns restricted property.

a. The following individuals also must meet 

the residency requirements:

i. Students who are temporarily absent 

from his/her PRC delivery area during 

full-time attendance of boarding 

school, college, vocational, technical, 

and other academic education. The 

coverage ceases 180 days after 

completing their study.

ii. A person who is temporarily absent 

from his/her PRC delivery area due 

to travel, employment, etc. Eligibility 

ceases after 180 days.

iii. Children placed in foster care outside 

of the PRC delivery area by court order.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 33
iv. Other Indian persons who maintain 

“close social and economic ties” with 

the tribe.

3. Notification and authorization of approval for 

payment. An individual must be authorized 

by the PRC authorizing official for the 

payment of services.

a. Authorization is based on an IHS provider 

issuing a referral for medical care being 

submitted to the PRC program. The 

referral is reviewed by the Managed 

Care Committee who will determine the 

medical priority.

b. In cases of emergency based on IHS 

medical priorities, a 72-hour notification 

to the PRC program must be made 

by the individual, provider, hospital, or 

someone on behalf of the individual.

c. Notification is extended to 30 days for 

older adults and people with disabilities. 

A person with a disability means the 

person cannot physically/mentally notify 

the PRC program.

4. PRC funds are limited to medical or dental 

services considered medically necessary 

and listed within the established area IHS 

medical/dental priorities. A copy of the area 

IHS medical/dental priorities is available 

at local IHS health centers and hospitals. 

An individual medical need at the time 

of services must be within the medical 

priorities being funded at that time.

5. An individual must apply for and use all 

alternate resources that are available 

and accessible, such as Medicare A and 

B, state Medicaid, state or other federal 

health programs, private insurance, etc. The 

IHS facility is also considered a resource, 

and therefore, the PRC funds may not be 

expended for services reasonably accessible 

and available at IHS facilities (Indian Health 

Service, Purchased/Referred Care).

In short, the IHS is the “payor of last 

resort” of persons defined as eligible for PRC, 

notwithstanding any state or local law or 

regulation to the contrary.

Medicaid

Medicaid was enacted in 1965 and is a joint federal 

and state insurance program that provides health 

coverage to individuals with low incomes or who 

lack resources. For AI/AN communities, Medicaid 

can help fill the gap in providing resources that 

might not be available through the IHS. A tribal clinic 

or IHS can bill Medicaid for services provided to 

AI/AN patients who are enrolled in Medicaid. This 

helps the local Indian clinic expand services.

Medicaid Eligibility

Each state decides eligibility, how providers 

are paid, and what services are covered under 

Medicaid. States cannot restrict Medicaid 

eligibility based on medical condition, type of 

services needed, or place of residence. Eligibility 

varies from state to state, with the Federal 

Government stipulating minimum requirements:

To cover certain groups of individuals:

■ Low-income families

■ Qualified pregnant women and children

■ People with disabilities receiving 

Supplemental Security Income (SSI)

Some common additional options for 

coverage are:

■ Individuals receiving home- and communitybased services

34 National Council on Disability/National Indian Council on Aging
■ Children in foster care who are not 

otherwise eligible (Centers for Medicare and 

Medicaid Service)

The Affordable Care Act of 2010 created the 

opportunity for states to expand Medicaid to 

cover nearly all low-income Americans under 

age 65.

12 states chose not to expand Medicaid 

under the Affordable Care Act (ACA), leaving 

approximately two million people in those states 

uninsured.

■ These states are Alabama, Florida, Georgia, 

Kansas, Mississippi, North Carolina, South 

Carolina, South Dakota, Tennessee, Texas, 

Wisconsin, and Wyoming.

■ Wisconsin expanded eligibility under a 

Medicaid waiver, instead of the ACA, so 

it does not have an uninsured low-income 

population as do the other 11 states 

(Garfield 2021).

Determination of Medicaid Eligibility

In states that expanded Medicaid under the 

ACA, the enrollment application was simplified, 

and income eligibility was based on a modified 

adjusted gross income.

Certain Medicaid eligibility groups do not 

require a determination of income and coverage 

may be based on enrollment in another program, 

such as:

■ SSI

■ A breast and cervical cancer treatment and 

prevention program

■ Children for whom an adoption assistance 

agreement is in effect under Title IV-E of the 

Social Security Act

■ Former foster care recipients who meet 

the requirements are eligible at any income 

level (Centers for Medicare and Medicaid 

Service)

Services covered by Medicaid

Medicaid programs have a “defined benefits 

package” that each enrollee is entitled to 

receive. To learn what services are available, you 

can contact your state’s department of Health 

and Human Services, local IHS clinic, Tribal 

Health Program facility, or other health care 

provider.

Health care benefits vary from state to state, 

and some states might require a nominal copayment by the patient for certain services. The 

Federal Government mandates many health care 

benefits, and there are optional benefits states 

can provide.

Mandatory Benefits (states must 

cover with Medicaid):

■ Inpatient hospital services

■ Outpatient hospital services

■ Early and periodic screening, diagnosis, and 

treatment services: EPSDT*

■ Nursing facility services

■ Home health services

■ Physician services

■ Rural health clinic services

*EPSDT program serves as Medicaid’s well-child 

program and pays regular screening, immunizations, 

preventative, dental, optical, mental health, 

developmental, and specialty services, and access to 

care for diagnosis and treatment.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 35
■ Federally qualified health center services

■ Laboratory and X-ray services

■ Family planning services

■ Nurse and midwife services

■ Certified Pediatric and Family Nurse 

Practitioner services

■ Freestanding Birth Center services (when 

licensed or otherwise recognized by the 

state)

■ Transportation to medical care

■ Preventative care such as vaccinations and 

flu shots

■ Tobacco cessation counseling for pregnant 

women

Optional Benefits (states can opt 

to cover with Medicaid):

■ Prescription drugs

■ Clinic services

■ Physical therapy

■ Occupational therapy

■ Speech, hearing, and language disorder 

services

■ Respiratory care services

■ Other diagnostic, screening, preventative, 

and rehabilitative services

■ Podiatry services

■ Optometry services

■ Dental services

■ Dentures

■ Prosthetics

■ Eyeglasses

■ Chiropractic services

■ Other practitioner services

■ Private-duty nursing services

■ Personal care

■ Hospice

■ Case management

■ Services for individuals aged 65 or older in 

an institution for mental disease (IMD)

■ Services in an intermediate care facility for 

people with intellectual disabilities

■ State plan home and community-based 

services—1915(i)

■ Self-directed personal assistance 

services—1915(j)

■ Community First Option—1915(k)

■ Tuberculosis (TB) related services

■ Inpatient psychiatric services for individuals 

under age 21

■ Other services approved by the 

Secretary**

■ Health homes for enrollees with chronic 

conditions—Section 1945

As of June 2019, all 50 states and D.C. have 

at least one program that provides assistance 

to older adults living outside of nursing homes, 

whether it’s at home, in adult day care, in adult 

foster care, or assisted living. Most states 

offer multiple programs (Paying for Senior 

Care).

**Includes services furnished in a religious 

nonmedical health care institution, emergency 

hospital services by a non-Medicare certified hospital, 

and critical access hospital (Centers for Medicare & 

Medicaid Services. Mandatory and Optional Benefits).

36 National Council on Disability/National Indian Council on Aging
How to Enroll in Medicaid?

Federal law mandates that tribal health programs 

help their community enroll in Medicaid and 

Children’s Health Insurance Program (CHIP). 

Many IHS or tribal health clinics have 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 

state’s online portal or to your local, county, or 

state Medicaid office to apply. Applying online 

speeds up the approval process.

Many states conduct real-time eligibility 

determinations for applicants. If a Tribal Health 

Program has access to their state’s Medicaid 

eligibility portal, or there’s a state on-site outreach 

worker with state portal access, patients can get 

Medicaid and/or CHIP coverage on the spot.

Express Lane Eligibility (ELE)

ELE provides states with important new avenues 

to ensure that children eligible for Medicaid 

or CHIP have a fast and simplified process for 

having their eligibility determined or renewed.

ELE permits states to rely on findings, for 

things like income, household size, or other 

factors of eligibility from another program 

designated as an express lane agency (ELA) to 

facilitate enrollment in health coverage. Express 

lane agencies may include:

■ Supplemental Nutrition Assistance Program 

(SNAP)

■ School Lunch

■ Temporary Assistance for Needy Families 

(TANF)

■ Head Start, National School Lunch Program 

(NSLP)

■ Women, Infants, and Children (WIC)

A state may also use information from state 

income tax data to identify children in families 

that might qualify so that families do not have to 

submit income information (Centers for Medicare 

and Medicaid Services).

Medicaid Home- and CommunityBased Services (HCBS)

To comply with the Supreme Court’s Olmstead 

ruling, states are required to provide communitybased treatment for people with intellectual or 

developmental disabilities, physical disabilities, 

and/or 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.

States can apply for waivers to provide homeand community-based services to particular 

groups. State HCBS Waiver programs must:

■ Demonstrate that providing waiver services 

won’t cost more than providing these 

services in an institution

■ Ensure the protection of people’s health and 

welfare

■ Provide adequate and reasonable provider 

standards to meet the needs of the target 

population

■ Ensure that services follow an individualized 

and person-centered plan of care (Centers 

for Medicare and Medicaid Services, Home 

and Community-Based Services 1915(c))

Standard home- and community-based 

services include but are not limited to:

■ Case management (i.e., supports and 

service coordination)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 37
■ Homemaker

■ Home health aide

■ Personal care

■ Adult day health services

■ Habilitation (both day and residential)

■ Respite care

■ Other types, such as transitioning individuals 

from institutional settings into their homes 

and community (Centers for Medicare and 

Medicaid Services. Home and CommunityBased Services 1915(c))

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. HCBS 

waiver programs may also provide services to 

foster independence, train family caregivers, and 

enable the individual to stay at home.

Children’s Health Insurance 

Program (CHIP)

CHIP provides low-cost health coverage to 

children in families that earn too much money 

to qualify for Medicaid. In some states, CHIP 

covers pregnant women. Each state offers 

CHIP coverage and works closely with its state 

Medicaid program (Healthcare.gov).

CHIP Coverage

CHIP benefits are different in each state. But all 

states are required to provide comprehensive 

coverage:

■ Routine check-ups

■ Immunizations

■ Doctor visits

■ Prescriptions

■ Dental and vision care

■ Inpatient and outpatient hospital care

■ Laboratory and X-ray services

■ Emergency services (Healthcare. gov)

Application to CHIP

Each state program has its own rules about who 

qualifies for CHIP. You can apply any time of year. 

If you apply for Medicaid coverage to your state 

agency, you’ll also find out if your children qualify 

for CHIP (Healthcare.gov).

Two Ways to Apply for CHIP:

1. Call 1-800-318-2596 (TTY: 1-855-889-4325)

2. Online application: https://www.healthcare

.gov/create-account

3. Fill out an application through the Health 

Insurance Marketplace®. If it looks like 

anyone in your household qualifies for 

Medicaid or CHIP, your information 

will be sent to your state agency. You 

will be contacted about enrollment 

(Healthcare.gov).

Medicare

Medicare is the federal health insurance 

program for:

■ People who are 65 or older

■ Certain younger people with disabilities

■ People with End-Stage Renal Disease 

(ESRD); permanent kidney failure 

requiring dialysis or a transplant 

(Medicare.gov)

38 National Council on Disability/National Indian Council on Aging
What are the parts of Medicare?

The different parts of Medicare help cover 

specific services:

■ Part A – Hospital Insurance

■ Part B – Medical Insurance

■ Part C – Medicare Advantage

■ Part D – Prescription drug coverage

Medicare Part A (Hospital Insurance)

Part A covers inpatient hospital stays, care in a 

skilled nursing facility, hospice care, and some 

home health care.

You usually don’t pay a monthly premium for 

Part A if you or your spouse paid Medicare taxes 

while working for a certain amount of time. This 

is sometimes called “premium-free Part A.”

If you aren’t eligible for premium-free Part A, 

you may be able to buy Part A. You’ll pay up to 

$499 each month in 2022. If you paid Medicare 

taxes for less than 30 quarters, the standard 

Part A premium is $499. If you paid Medicare 

taxes for 30–39 quarters, the standard Part A 

premium is $274.

Medicare Part A Coverage

■ Inpatient care in a hospital

■ Skilled nursing facility care

■ Nursing home care (inpatient care in a 

skilled nursing facility that’s not custodial or 

long-term care)

■ Hospice care

■ Home health care (Part A)

Medicare Part B (Medical Insurance)

Part B covers certain doctors’ services, outpatient 

care, medical supplies, and preventive services.

Everyone pays a monthly premium for Part B. 

Your Part B premium will be automatically 

deducted if you get one of the benefits listed 

below. If not, you will get a bill.

■ Social Security

■ Railroad Retirement Board

■ Office of Personnel Management

The standard Part B premium amount in 

2022 is $170.10 monthly. Most people pay 

the standard Part B premium amount. If your 

modified adjusted gross income as reported 

on your IRS tax return from two years ago is 

above a certain amount, you’ll pay the standard 

premium amount and an Income Related 

Monthly Adjustment Amount (IRMAA). IRMAA 

is an extra charge added to your premium 

for an individual earning $91,000 or more or 

married couples filing jointly, earning $182,000 

or more(Part B).

Medicare Part B Coverage

■ Clinical research

■ Ambulance services

■ Durable medical equipment (DME)

■ Mental health

● Inpatient

● Outpatient

● Partial hospitalization

■ Limited outpatient prescription drugs 

(Part B)

Medicare Part D (prescription 

drug coverage)

Helps cover the cost of prescription drugs, 

including many recommended shots or 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 39
vaccines. To get Medicare drug coverage, you 

must join a Medicare-approved plan that offers 

drug coverage, which includes Medicare drug 

plans and Medicare Advantage Plans with drug 

coverage (What’s Medicare).

How Does Medicare Work?

There are two options to receive Medicare 

coverage: Original Medicare and Medicare 

Advantage.

Original Medicare

Original Medicare includes Medicare Part A 

(Hospital Insurance) and Medicare Part B 

(Medical Insurance). You pay for services as 

you get them. When you get services, you’ll 

pay a deductible at the start of each year, and 

you usually pay 20 percent of the cost of the 

Medicare-approved service, called coinsurance. 

If you want drug coverage, you can add a 

separate drug plan (Part D). Original Medicare 

pays for much, but not all, of the cost for covered 

health care services and supplies (Medicare.

gov, What’s Medicare). Original Medicare doesn’t 

cover vision, hearing, and dental services.

Medicare Advantage (Part C)

Medicare Advantage is a Medicare-approved plan 

from a private company that offers an alternative 

to Original Medicare for your health and drug 

coverage. These “bundled” plans include Part A, 

Part B, and usually Part D. Plans may offer some 

extra benefits that Original Medicare doesn’t 

cover—like vision, hearing, and dental services. 

Medicare Advantage Plans have yearly contracts 

with Medicare and must follow Medicare’s 

coverage rules (Medicare.gov, What’s Medicare).

How to apply online for just Medicare:

1. If you are within three months of turning 

65 or older and not ready to start your 

monthly Social Security benefits yet, you 

can use the online retirement application 

to sign up just for Medicare and wait to 

apply for your retirement or spouse’s 

benefits later.

2. It takes less than 10 minutes.

3. There are no forms to sign and usually no 

documentation is required.

Website: https://secure.ssa.gov/iClaim/rib

Yes, you can call to apply for Medicare.

Toll-free number: 1-800-MEDICARE

(1-800-633-4227)

TTY number: 1-877-486-2048

Veterans Affairs (VA)

A Reimbursement Agreement provides VA 

Funds for Native Veterans for care from the 

IHS and many Tribal Health Programs. The VA 

reimbursement includes direct care service to 

veterans, including:

■ Inpatient hospital

■ Outpatient hospital

■ Clinic

■ Ambulatory surgical

■ Outpatient pharmacy services

If you are an eligible AI/AN veteran, you do 

not need preauthorization to receive care through 

an IHS facility or a Tribal Health Program (THP) 

facility that has a reimbursement agreement with 

40 National Council on Disability/National Indian Council on Aging
Health Care Resources

Who What Contact Info

Indian Healthcare 

Services—Individual 

Service Units

Address and contact 

information of each Service 

Unit

https://www.ihs.gov/location

IHS—Indian Health 

Manual

Eligibility and services to 

Indians and others

https://www.ihs.gov/ihm/pc/part-

p2c1/-2-1.2

IHS—Purchased Referred 

Care (PRC)

Requirements of payment 

requests

https://www.ihs.gov/pr

Tribes and tribal health 

care organizations

Medicaid & CHIP 

enrollment strategies for 

tribal communities

https://www.medicaid.gov/federalpolicy-guidance/download

cib112816.pd

Children’s Health 

Insurance Program (CHIP)

Two ways to apply for 

enrollment

Call 1-800-318-2596 (TTY: 

1-855-889-4325)

Complete application at the Health 

Insurance Marketplace

https://www.healthcare.go

create-account

Medicare coverage Is my test, item, or service 

covered by Medicare?

Link is for people with Medicare and 

for Medicare contractors

https://www.medicare.gov/covera

“Medicare: Securing 

Today and Tomorrow”

A Medicare informational 

booklet by the Social 

Security Administration

https://www.ssa.gov/pubs/EN-0

10043.pdf-page=1

Centers for Medicare and 

Medicaid Services

“Understanding Medicare 

Advantage & Medicare 

Drug Plan (Part C & D) 

Enrollment Periods”

https://www.medicare.gov/Pub

pdf/11219-Understanding-MedicarePart-C-D.pd

Medicare Contact information Website: www.medicare.gov

Toll-free number:

1-800-MEDICARE

(1-800-633-4227)

TTY number: 1-877-486-2048

Indian Health Service 

and the Memorandum of 

Understanding with the 

Veterans’ Administration

Reimbursement 

Agreement between VA 

Funds for IHS Care for 

Native Veterans

https://www.ihs.gov/vaihsmo

VA Community Care 

Program

Tribal Health Programs 

interested in establishing a 

reimbursement agreement 

with VA

https://www.va.gov/communitycar

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 41
VA, and you do not have to pay a VA co-payment 

(U.S. Department of Veterans Affairs).

Tribal Health Programs interested in 

establishing a reimbursement agreement 

with VA can learn more about initiation and 

implementation, eligibility, and enrollment 

verification, and submitting claims at the VA 

through the VA’s Community Care program.

VA Community Care Program: https://www

.va.gov/COMMUNITYCARE/programs/veterans/

ihs/index.asp

42 National Council on Disability/National Indian Council on Aging
Chapter 3: Sports & Recreation for People 

with Disabilities

Introduction

Currently, more than 200 Boys and Girls 

Clubs of America serve Native communities, supporting youth academic success, 

providing positive adult role models, 

offering meal programs, and keeping 

traditions alive by embedding indigenous 

cultural components throughout the Club 

Day. After all, culture is a way of life, and 

our culture as Native people shows up in 

our values and beliefs, how we gather, 

how we eat, how we learn, and so much 

more. These traditions are so important 

to pass on to our young people, who will 

carry our culture forward.

Carla Knapp 2021

J

ust as the children are active in the 

indigenous cultural programming at 

the Boys and Girls Club of America, all 

American Indian and Alaska Natives can improve 

their mental and physical health by staying active. 

Physical activity can help you strengthen your 

heart, muscles, and bones, improve coordination, 

and help you feel better about yourself.

Recreational activity is also good for 

everybody, and the choices of activities for 

people with disabilities are limitless. Whether 

you take up wheelchair basketball or start a new 

vegetable garden using assistive tools, you’ll be 

rewarded with better physical and mental health, 

joy, and an enriched quality of life.

The Americans with Disabilities Act requires 

that community programs be accessible to 

people with disabilities, and IDEA requires that 

public school intramural and interscholastic sports 

programs be available to people with disabilities 

(Disability Sports, 2001b). As such, adaptive 

sports and recreation are increasingly available. 

Most gyms and fitness programs design their 

activities with modifications to accommodate all 

skill levels and conditions. Recreational facilities 

such as movie theaters, museums, hiking trails 

at state and federal parks, and monuments 

are required to make trails, information, and 

activities accessible to all visitors. There are many 

recreational activities available to people with 

disabilities.

National Organizations—Sports 

and Recreation for People with 

Disabilities

The organizations listed below provide a variety 

of resources and supports to people and 

community organizations that empower people 

with disabilities to live active, creative lives.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 43
Unlimited Recreational Activities for People with Disabilities

Aquatics Fishing Jogging

Archery Fencing Martial Arts

Arts and Crafts (sewing, weaving, 

jewelry making, etc.

Frisbee Painting

Graphic Arts Fitness Training Skiing (Water and Snow)

Aviation Gardening Music

Baseball Golf Photography

Basketball Handball Pottery/Ceramics

Bow hunting Hiking Swimming

Bowling Hockey Skydiving

Camping Horseback Riding Tennis

Cycling Hunting Weight training

Dance Motorcycle Riding Writing

(CME Toolkit)

Sports: Modifications and Resources

Sport Modification Resource

Billiards This is a great game for wheelchair users

Modified pool cues or a roller attachment 

at the end of a cue stick allow players with 

limited hand use to enjoy the sport and be 

competitive with the best players

World Disability Billiards and 

Snooker (WDBS0: https://www

.wdbs.info

Bowling Wheelchair bowling is played just as the 

stand-up version with the exception of 

special push tools and ball-drop ramps for 

bowlers with limited arm mobility. Special

snap handle balls are available for those who 

can’t get a good grip on the ball

American Wheelchair Bowling 

Association: https://awba.org

Camping Camping is a great way to be close to nature

State and national parks are a good place to 

start and check whether you need to make 

reservations. As mandated by the Americans

with Disabilities Act, state and national parks 

generally have accessible accommodations, 

bathrooms, and level ground. Progress

toward accessibility continues but you can 

find many camp areas that are already 

inclusive

U.S. National Park Access Pa

https://store.usgs.gov/access-pa

44 National Council on Disability/National Indian Council on Aging
Sport Modification Resource

U.S. National Parks. Many have accessib

trails and shorelines. Residents of the United

States with disabilities can obtain a free 

Access Pass, a lifetime entrance pass to over 

2,000 national parks, monuments, historic 

sites, recreation areas, and wildlife refuges

The pass also provides a discount on fees 

for camping, swimming, parking, boat 

launching, and tours

Gardening With some adaptations (raised beds and 

special tools, for example), gardening can be 

barrier-free and fully inclusive

The American Horticultural Therapy 

Association promotes physical and mental 

health through gardens and plants

Video series on adaptive 

gardening at the Dana and 

Christopher Reeves Foundation 

website:

https://www.christopherreev

.org/living-with-paralysis

health/staying-active/

accessible-gardening

American Horticultural Therapy 

Association:

https://www.ahta.or

Golf Golf is quite adaptable to the seated player

Custom clubs and special carts, some with 

single-passenger swivel seats and tires that 

won’t damage the greens, open the game 

to players who have limited leg function

The Americans with Disabilities Act (ADA) 

requires all public accommodations, 

including golf courses, to provide goods and 

services to people with disabilities as the 

public. It is advisable to call the golf course

ahead of time

United States Disabled Golfers 

Association:

http://www.usdga.ne

Hand 

Cycling

Hand cycling uses three-wheel, multi-geared 

cycles. Hand cranking has become quite

popular across the country, and a rider can 

move the three-wheelers along at a steady 

20 mph pace, enough to keep up with bike 

riders without disabilities. Hand cycling has

emerged as an elite competitive sport, too. It’s

included in the Paralympics and many major 

marathons, triathlons, and century rides

There are several variations 

on hand-powered cycles. For

information about bikes see:

http://www.freedomryder.co

https://www.varnahandcycles.co

Bike-on: https://bike-on.com

Wheelchair 

Racing

Wheelchair racing can take place on the 

track or on the road. The racing wheelchair

has three wheels, one small one up front 

and two larger wheels that the person sits 

between; it looks like a mini dragster

A beginner’s guide to wheelchair 

racing, including racing 

classifications, competitions and 

more

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 45
Sport Modification Resource

Almost all running road races from 5K to 

marathon length have wheelchair divisions

The Summer Paralympics features a 

wheelchair marathon and numerous track 

races

https://www.quantumrehab.co

resources/consumer-article-abeginners-guide-to-wheelchairracing.as

Horseback 

Riding

Horseback riding is an exhilarating recreation 

that’s doable for many people living with 

paralysis, using padding or specially made 

saddles and a mounting ramp. Riding can

be fun but also facilitate cognitive as well as 

sensory and motor development

There are many riding programs across the 

United States that cater to disabled riders

Professional Association of 

Therapeutic Horsemanship 

International:

https://www.pathintl.or

Sailing Sailboats can accommodate people with 

varying degrees of paralysis. There are boats

that are quite accessible for the wheelchair 

sailor (a transfer box helps with the hardest 

part—getting aboard)

A sip ‘n puff control has been adapted to a 

fleet of boats called Martin 16s, originally 

designed for a person with quadriplegia

These boats are affordable, comfortable, 

safe, and accessible to anyone

Another accessible boat called an Access 

Dinghy, which can also be controlled using a 

joystick, is available for rent at many sailing 

centers. Sailors are seated low in the boat

for added stability. A servo-assist joystick

can operate the electric winches and can be 

controlled by hand, foot, chin, or any moving 

body part

There are numerous sailing 

programs across the country 

that offer boats and instruction 

for people with disabilities

Check your local marinas; many 

programs are listed on the United 

States Sailing Association (USSA) 

website: https://www.ussailing.or

Martin 16: https://martin16.com

Skiing 

(Alpine)

This is a sport that’s been well adapted 

for people with disabilities, thanks to 

technology. Depending on one’s level of

function, there are three ways a person can 

get from the top of the mountain down the 

snowy trails to the bottom

1) At the highest end of the tech scale is 

the mono-ski, best for those with good 

upper body strength and trunk balance

The skier sits in a molded shell mounted 

to a frame above a single ski with a shock 

absorber linking the frame to the ski

Two outriggers are used for balance and 

turning. Mono-skiing closely resembles

stand-up skiing, and the mono-ski selfloads onto the chairlift

There are many ski programs for 

people with disabilities across the 

United States:

■ National Sports Center for the 

Disabled: https://nscd.org

■ Breckenridge Outdoor 

Education Center: https://

boec.org

■ National Ability Center: 

https://discovernac.org

■ Adaptive Sports Foundation: 

https://www.adaptivesport

foundation.org

46 National Council on Disability/National Indian Council on Aging
Sport Modification Resource

2) The biski, a bucket seating system similar 

to the monoski, sits atop two heavily 

shaped skis and can be balanced with 

attached or hand-held outriggers. Biskis are used by people who have more

significant physical limitations and are 

tethered or skied from behind by an 

instructor

3) The sit-ski, akin to a toboggan, works 

for people with even more significant 

limitations. Those with some hand

function can steer the sit-ski with short 

ski poles and by leaning. The sit-ski is

tethered to an instructor

■ Paralympics (Alpine Skiing): 

https://www.paralympic.or

alpine-skiing

Skiing (cross 

country)

Cross country sit-skis have molded, or 

canvas seats, mounted on frames that are 

simple and lightweight, creating more 

independence

The frames are attached to two cross country 

skis for snow skiing or a mountain-board for 

summer trails

The skier propels along the course using 

cross country ski poles that have straps to 

support any limited hand function

Call your local cross-country 

ski area to see if it has sit-ski 

equipment

A good source of information, 

photos, and videos about sit 

skiing is available on the state 

of Massachusetts parks and 

recreation website

https://www.mas

gov/service-details/

accessible-cross-country-skiing

Tennis Wheelchair tennis is played with the 

same rules as stand-up tennis, except the 

wheelchair player is allowed two bounces of 

the ball

Tennis is a Summer Paralympic 

sport. Check out the International

Tennis Federation website: 

https://www.itftennis.com/e

Water skiing Water skiing uses sit-skis that are varied in 

width of 10 to 15 inches, depending on the 

skier’s ability. Some skis have outriggers or

short ski tips attached to either side of the sit 

ski for balance

The tow ropes have a modified handle so 

people with hand disabilities can hook up 

to a boat and thrill to the speed and wakecrashing fun of water skiing

Skis are available commercially and many 

have been added to recreation programs in 

many communities across the country

USA Adaptive Water Ski and 

Wake Sports: https://www

.usaadaptivewaterski.or

There are water ski tournaments for skiers 

with mobility limitations and competitions 

include slalom, tricks, and jumping events

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 47
Sport Modification Resource

Weightlifting 

and bodybuilding

Technically, it is not hard to adapt lifting 

weights for people with lost function due to 

paralysis. The activity has clear benefits for

fitness, but lifting has also emerged as a very 

competitive activity at the international level

Ask your gym about providing 

adaptive equipment and a trainer 

for instruction and/or spotting

An article by Devon Palmero 

offers 10 adaptive disability 

equipment recommendations:

https://www.theptdc.com/article

disability-fitness

(Wheel) 

Sportschair 

basketball

A fast-paced game for athletes with lower 

limb impairments. During a game, five

athletes on the basketball court and seven 

substitutes on the sidelines. There are four

quarters of 10 minutes each unless a game 

goes into overtime due to a tie at the end of 

the fourth quarter

National Wheelchair Basketball

Association (NWBA)

https://www.nwba.or

To find NWBA teams:

https://www.nwba.org/findate

The Wheelchair Basketball Training 

Zone is a program of the NWBA, 

to develop and introduce athletes 

of all ages and abilities to the sport 

of wheelchair basketball

https://www.challengedathlete

org/training-zone/

The International Wheelchair 

Basketball Federation (IWBF) is 

the governing body for wheelchair 

basketball around the world

IWBF is a nonprofit organization 

whose purpose is to provide 

opportunities for persons with a 

lower limb disability to play the 

game of wheelchair basketball

https://iwbf.org

The Tribal Adaptive Thunderbirds 

are Indian Country’s first 

sportschair basketball team

While the competitive team is for 

youth aged 10 to 21, the practices 

are open to everyone

Practices are held weekly at San 

Juan College in Farmington, NM

Contact Jason Hotchkiss

(970) 306-9951

https://tribaladaptive.com

thunderbirds/

48 National Council on Disability/National Indian Council on Aging
Organization What They Do Website

Adaptive 

Adventures

The world’s largest mobile outdoor adaptive 

sports provider and nonprofit for children and 

adults. Core principles

1. We serve anyone in need. No matter yo

perceived physical limitations or economic 

barriers, this program can serve you

2. We’ll come to you. They have worked wi

rehab hospitals, park districts, community 

gyms, and other organizations across all 50 

states, Canada, and Puerto Rico

3. We’ll provide what you need. AA provid

customized activities, innovative equipment, 

staff training, and resources to further 

inclusion for individuals and communities

https://adaptiveadventures

org/

American 

Association 

of Adapted 

Sports 

Programs

Partners with high-quality implementation, 

growth, and sustainability strategies to 

programs offering adapted athletics at 

schools and community organizations

Partner organizations have access to best 

practices, policy, resources, data, research, 

educational training programs, equipment 

kits, rules committees, and technical expertise 

to successfully implement inclusive adapted 

athletic programs

https://adaptedsports.org

Amputee 

Coalition

The mission of the Amputee Coalition is to 

empower people affected by limb loss to 

achieve their full potential through education, 

support, and advocacy, and to promote limb 

loss prevention

Provides information, referrals, a state Resource 

Map, Support Groups, Peer Support, Youth 

Camps and more

https://www.amputeecoalition.or

To contact the Amputee 

Coalition:

https://www.amputeecoalition.or

limb-loss-resource-center/askan-information-specialist-2/

To locate resources in your 

state:

https://www.amputeecoalition.org/limbloss-resource-cente

resources-by-state/

Art Enables Art Enables believes that artists with disabilities 

are vital to a robust arts landscape and should 

be afforded the opportunity to pursue art as a 

vocation and career

https://art-enables.org

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 49
Organization What They Do Website

Art Enables works with artists who experience 

a broad range of developmental and cognitive 

disabilities and mental health challenges, 

including autism, Down syndrome, traumatic 

brain injury, schizophrenia, and bipolar 

disorder, among others

Art Enables’ artists are largely self-taught and 

tell powerful stories through their artwork

To become a resident artist at 

Art Enables:

https://art-enables.org

enroll-in-studio

BlazeSports 

America

Provides adaptive sport, recreation, and 

physical activity to Georgia’s youth, adults, 

veterans, and military personnel with physical 

disabilities and PTSD

Since 2007, BlazeSports has provided training 

and education to increase the capacity of local 

service providers across the United States

https://blazesports.org

The Boys and 

Girls Clubs of 

America

(BGCA)

The BGCA provides sports and recreation to AI/

AN youth both on and off Native lands

BGCA Native Services offers a broad selection 

of culturally relevant programs to address the 

unique needs of Native Youth. Their programs

include:

■ All Stars

■ Be There

■ Cultural Program Toolbox

■ Diplomas to Degrees

■ DIY STEM

■ Healthy Habits

■ My Future

■ Project Learn

■ SMART Girls

■ Smart Moves

■ Teen Dating Violence

■ T.R.A.I.L. DiabetesPreve

■ WorkforceDevelopment

https://www.bgca.or

about-us/local-clubs/

native-services

Boys and Girls Clubs of 

America articleabout 

Reclaiming our Native Youth:

https://www.bgca.or

news-stories/2021/October/

reclaiming-our-story-fornative-youth

Disability 

Arts Online

Led by people with disabilities to advance 

disability arts and culture. Artists with

disabilities have a platform to blog and share 

thoughts and images describing artistic 

practice, projects, and how to find inspiration 

and be creative. Primarily, they publish

editorial, blogs, and showcases of art, providing 

a place where opinion pieces, reviews and 

interviews can be shared and commented on

https://disabilityarts.online

Directory of organizations:

https://disabilityarts

online/directory/category/

organisation/

50 National Council on Disability/National Indian Council on Aging
Organization What They Do Website

Move United Created in April 2020 from a merger of Disabled 

Sports USA and Adaptive Sports USA. Move

United is an official Affiliate of the U.S. Olympic 

Paralympic Committee, a member of the 

President’s Committee on Employment of 

People with Disabilities and is endorsed by 

the President’s Council on Sports, Fitness & 

Nutrition, the United States Ski and Snowboard 

Association, the Professional Ski Instructors 

of America, and the Aerobics and Fitness 

Association of America

With hundreds of partners, from member 

organizations, to hospitals, to disability 

organizations and sports organizations, Move 

United is leading a movement so that no one is 

left on the sidelines, and everyone gets in the 

game

To find a chapter or adaptive 

sports team:

https://www.moveunitedspor

org/locations/

The website provides 

information on 73 types 

of sports and adaptive 

equipment suppliers for a 

broad range of sports

National 

Arts and 

Disability 

Center 

(NADC)

NADC is the national information dissemination, 

technical assistance, and referral center 

specializing in the field of arts and disability

■ Promotes full inclusion of children 

and adults with disabilities into arts 

communities

Its resource directories, 

annotated bibliographies, 

related links, and conferences 

serve to advance artists with 

disabilities and accessibility 

to the arts. Website

https://www.semel.ucla.e

nadc/resource/national-artsand-disability-center

Under the map is a 

comprehensive list of 

hundreds of organizations 

that include people with 

disabilities in the arts

https://www.semel.ucla.e

nadc/nadc-resources-map

NADC, University of 

California, Los Angeles

11075 Santa Monica Blvd.,

Suite 200

Los Angeles, CA 90025

Phone: 310-825-5054

Fax: 310-794-1143

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 51
Organization What They Do Website

National 

Center on 

Health, 

Physical 

Activity, and 

Disability

NCHPAD helps people with disability and 

other chronic health conditions achieve health 

benefits through increased participation in 

all types of physical and social activities, 

including fitness and aquatic activities, 

recreational and sports programs, adaptive 

equipment usage, and more

Provides web-based materials: individualized 

information, referral, and consultation services 

to people with disabilities, families, caregivers, 

policymakers, community members, 

health care practitioners, and public health 

professionals

https://www.nchpad.or

The National 

Inclusion 

Project

Provides recreational programs and provides 

community organizations the tools and 

training they need to serve ALL children in their 

communities

MISSION:

To make sure no child has to sit on the 

sidelines, and that children of all abilities have 

the chance to play, laugh, and learn TOGETHER

Offers a 16-week online Inclusive Recreation 

Specialist Course that teaches how to 

comprehensively adapt to every child’s 

needs in every activity across all recreational 

settings

https://www.inclusionprojec

.org

The National 

Sports 

Center for 

the Disabled

NSCD has led the way for 50 years in 

redefining adaptive outdoor experiences, 

helping participants reignite a passion for 

playing and competing in the great outdoors

They have re-invented adaptive equipment, 

technology, and coaching methods. The

National Sports Center for the Disabled is 

located in Winter Park, CO and offers incredible 

adaptive outdoor experiences from skiing, 

hiking, and horseback riding to rafting, archery, 

camping, and more

https://nscd.org

Paralyzed 

Veterans of 

America

PVA advocate for:

■ Quality health care

■ Research and education

■ Benefits available

■ Civil rights and opportunities to maximize 

independence

https://pva.org

52 National Council on Disability/National Indian Council on Aging
Organization What They Do Website

Project 

Venture

(Previously 

named The 

National 

Indian Youth 

Leadership 

Project)

Project Venture operates in 25 states, including 

Hawaii, and eight Canadian provinces. Started

in 1982 as a summer leadership camp, Project 

Venture now provides year-round programming 

both in and out of school and is staffed 

predominantly by Native Americans from 

various backgrounds

https://projectventure.org

Special 

Olympics

Provides athletic training and competitive outlets 

to children and adults with intellectual disabilities, 

empowering them to become physically fit, 

productive, and respected members of society 

through sports training and competition

Special Olympics serves 2.5 million people

with intellectual disabilities in more than 200 

programs in 180 countries

https://www.specialolympic

.org/program

Look for a Special Olympics 

program in your area or form 

your own with the assistance 

of the Special Olympics

Tribal 

Adaptive

Uses sports as a tool to improve the health and 

wellness of Native Americans with disabilities

Encourages other Natives with disabilities to 

find a path toward a successful, independent 

life through adaptive sports. Through media

and engagement with tribes and urban tribal 

communities, Tribal Adaptive finds resources 

and opportunities to access equipment 

and training to pursue any level of athletic 

achievement an individual desires

https://tribaladaptive.com

United 

Amputees 

Services 

Association

Renamed, 

“The O & P 

Edge”

(Orthopedics 

and 

Prosthetics)

Dedicated to helping amputees across the 

nation live a fulfilling life with dignity and 

independence

Has a magazine (print and online) and member 

facilities across the country

Products include:

■ Prosthetics

■ Orthotics

■ Footwear & Perorthics

■ Equipment/Supplies

Services include:

■ Accreditation

■ Central Fabrication

■ Consulting

■ Cosmetic Restoration

■ Networks

■ Rehabilitation

https://opedge.com

Search engine allows you to 

find orthotics and prosthetics 

care in your area:

https://opedge.com/facilities

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 53
Organization What They Do Website

World 

Triathlon

For paratriathlon athletes:

Para Triathlon entails:

■ 750 m swim

■ 20 km bike (hand bike/tandem)

■ 5 km run (racing wheelchair)

Develops the triathlon community by growing 

participation at all levels, building a pathway to 

developing elite performance, evolving events, 

and building an athlete’s profile

https://www.triathlon.or

paratriathlon

Grant Opportunities to Support 

Health Programs

Challenged Athletes Foundation (CAF)

provides grants to individual athletes with a 

permanent physical disability pursuing an active 

lifestyle through physical fitness or competitive 

athletics. The individual’s permanent disability 

must impair mobility, affect the neuromuscular 

system, or impair balance or motor control. 

CAF uses the International Paralympic 

Committee’s classification structure as a 

guideline and all qualifying individuals must 

provide supporting documentation from a 

medical professional to explain how their 

physical disability affects their activities of daily 

living. Hearing impairments and intellectual and 

developmental disabilities do not qualify for 

support through CAF.

The website provides specific information 

about sport expense requests, equipment 

requests, and athletic prosthetics.

Website: https://www.challengedathletes.org/

programs/grants/

Kelly Brush Foundation, through the Active 

Fund, provides grants to purchase adaptive sports 

equipment for people with paralysis caused by 

spinal cord injury. The Kelly Brush Foundation 

believes in the power of sport and recreation to 

foster inclusion and overcome the barriers of 

paralysis. They have helped over 900 people from 

48 states purchase handcycles, mono-skis, sport 

chairs, racing chairs, hockey sleds, and much 

more.

Website: https://kellybrushfoundation.org/

theactivefund/

High Fives Foundation has helped countless 

injured athletes and veterans get back to doing 

what they love. The Foundation aims to be the 

leader of education and recovery from life-altering 

injuries in outdoor action sports. These include 

spinal cord injuries, traumatic brain injuries, 

amputation or other mobility-limiting injuries that 

occurred in an individual’s lifetime. Grants provide 

funding in specific funding categories: living 

expenses, insurance, health, travel, adaptive 

equipment, winter equipment, and High Fives’ 

healing network.

Website: https://highfivesfoundation.org/

Athletes Helping Athletes provides eligible 

athletes with a custom-built adaptive bike.

Website: https://www.roadrunnersports.com/

content/aha-home-page

54 National Council on Disability/National Indian Council on Aging
Chapter 4: Education

“Every time there’s an issue that comes up. You have options. 

You have rights. And they (parents) really do have a lot of 

power, but it’s just taking that step, having that courage.”

Tona Treetop, Advocate and parent of a 

child with a disability

History of Boarding Schools

T

hroughout our country’s history education 

has been prioritized for American Indian 

and Alaska Native (AI/AN) children, and in 

1819 the Indian Civilization Act provided $10,000 

to religious groups and individuals who wanted to 

live with and teach Indian children (Rehyner).

What ensued was the forced removal of 

Indian children from their families, tribes, 

culture, language, and homelands to live in 

boarding schools sometimes located hundreds 

of miles away from home. The tyrannical 

practice continued well into the 1970s. 

Children at boarding schools endured physical, 

sexual, and emotional abuse, severe neglect, 

disappearance, and even death.

Throughout this history, it was believed 

that Native children needed to be assimilated 

into mainstream American society. Most offreservation boarding schools followed the Carlisle 

Indian Industrial School model, “Kill the Indian, 

and save the man.”

In 1928, an independent investigation, the 

Meriam Survey, sharply criticized the conditions 

of boarding schools and spurred efforts for 

reform. In 1934, the Indian Reorganization 

Act was passed to enable tribal nations to 

take control of boarding and day schools 

on reservations (History of American Indian 

Schools, Wikipedia). However, most boarding 

schools operated off reservation land. It was not 

until 1978 with the passage of the Indian Child 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 55
Welfare Act that Native American parents gained 

the legal right to deny their children’s placement 

in off-reservation schools (Northern Plains 

Reservation AID).

At one time there were as many as 367 

government-funded and church-run Indian 

boarding schools operating in 29 states. In 1926, 

boarding school enrollment reached:

■ 83% of Indian school age children

■ 60,889 children (National Native American 

Boarding School Healing Coalition).

Legacy of Boarding Schools

■ 1 in 3 AI/AN children live in poverty today

■ 67% AI/AN graduation rate (national average 

is 80%)

■ 53% graduation rate at BIE schools (National 

Native American Boarding School Healing 

Coalition, Impact)

■ Highest percentage of special education 

students of any racial/ethnic group in 

the U.S. (National Center for Education 

Statistics)

Special Education

■ In 2018 18% of AI/AN students aged 3–21 

received special education services, the 

highest of any racial/ethnic group (National 

Center for Education Statistics 2018)

“American Indian or Alaska Native students 

ages 6 through 21 were four times as likely to be 

served under the (IDEA) Part B, [federal special 

education law], for developmental delay than 

were students ages 6 through 21 in all other 

racial/ethnic groups combined” (Individuals with 

Disabilities Education Act).

The high percentage of special education 

students and low graduation rates can be 

attributed to historical trauma induced by 

boarding schools and many other historical 

factors. The remainder of this chapter focuses 

on education laws, practical tips to advocate for 

your child, and resources to facilitate positive 

educational outcomes for AI/AN students.

Federal Education and Disability 

Laws

Introduction—Facts About AI/AN 

students

AI/AN students comprise one percent of all 

public elementary and secondary students in 

the United States or approximately 500,000 

students (National Center for Education 

Statistics).

The vast majority of AI/AN students attend 

public schools; however, there are 183 Bureau of 

Indian Education schools operating in 23 states.

■ 130 tribally controlled schools

■ 53 BIE operated schools

■ 2 postsecondary schools are operated by 

the BIE

● Haskell Indian Nations University

● Southwestern Indian Polytechnic Institute

The BIE also funds 33 tribal colleges, 

universities, tribal technical colleges (NAEP 5).

Federal Education Laws

Every Student Succeeds Act (ESSA) 

of 2015

The 1965 passage of the Elementary and 

Secondary Education Act (ESEA) established the 

goal of “full educational opportunity” for all of 

56 National Council on Disability/National Indian Council on Aging
our nation’s school aged students. The law was 

renamed ESSA in its 2015 reauthorization.

The ESSA recognizes the value of cultural 

preservation and aims “to ensure that Indian 

students gain knowledge and understanding of 

Native communities, languages, tribal histories, 

traditions, and cultures.” The law also:

■ Established language immersion programs, 

and

■ “Activities that recognize and support 

the unique cultural and educational 

needs of Indian children and incorporate 

appropriately qualified tribal elders and 

seniors.” (NAEP 9)

Federal Disability Laws that Apply to 

Public Education

There are three laws that protect the rights 

of public school students with disabilities 

and their families: the American with 

Disabilities Act, the Individuals with Disabilities 

Education Act (IDEA), and Section 504 of the 

Rehabilitation Act.

Americans with Disabilities Act 

(ADA) of 1990

The ADA is a civil rights law that prohibits 

discrimination solely on the basis of disability 

in employment, public services, and 

accommodations. Tribal sovereignty makes 

the ADA largely inapplicable to tribal nations. 

However, ADA does apply to public schools.

Individuals with Disabilities 

Education Act (IDEA)

The aim of IDEA is to improve the educational 

outcomes of children with disabilities by ensuring 

that eligible children receive a free, appropriate 

public education (FAPE) that meets an individual 

child’s needs. IDEA applies to all public schools, 

tribal and BIE schools, and private schools that 

receive IDEA funding.

IDEA requires that school districts and 

tribally controlled and BIE schools provide 

impartial hearings for parents who disagree 

with the identification, evaluation, or educational 

placement of a child with a disability. Part B and C 

of IDEA guarantees special education and related 

services are provided to eligible infants, toddler, 

and youth with disabilities.

■ Part B of IDEA provides special education 

and related services to eligible children/

students aged 3 to 21. A multidisciplinary 

team determines if a child meets disability 

criteria within one or more of 13 specific 

disability categories.

■ Part C of IDEA provides early intervention 

services (birth to 36 months of age) in the 

areas of physical development, cognitive 

development, communication, social, 

emotional development, and adaptive 

development.

The Rehabilitation Act of 1973

The Rehabilitation Act prohibits discrimination 

based on disability in federal agencies or in any 

program that receives federal funds.

■ Section 504 of the Rehabilitation Act 

establishes a student’s right to full access 

and participation to education and all 

school-related activities and requires 

schools to provide appropriate services 

to meet the individual needs of qualified 

students.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 57
Comparison of ADA, IDEA, and 

Section 504 of the Rehabilitation Act

Again, the three federal laws that protect 

students with disabilities are:

ADA = Americans with Disabilities Act

IDEA = Individuals with Disabilities Education Act

504 = Section 504 of the Rehabilitation Act 

of 1973

The vocabulary below is intended to help 

readers understand a comparison of the ADA, 

IDEA, and Section 504 that follows.

Vocabulary

Local education 

agency

A school district; the Bureau of Indian Education

Special education 

services

Instruction and related services that help students access the curriculum 

and school activities

Related services

(Can be any one or 

more)

Adaptive physical education, occupational therapy, physical therapy, 

music or art therapy, speech and language therapy, audiology, assistive 

technology, social work, etc

FAPE

“Free Appropriate 

Public Education”

Free appropriate public education (a legal term that guarantees every 

student receives a free public education appropriate to the needs of the 

student)

Procedural 

safeguards

A set of requirements that schools must follow to protect the rights of 

children with disabilities and their families

Identification The process that determines whether a student has a disability

Inclusion Inclusion means the full and active participation of people with 

disabilities in everyday settings

Evaluation A set of tests and observations used to determine if a student has a 

disability

Placement Where and how services are provided to a student with a disability. It

can be with the general education population or in a segregated/special 

education classroom or setting

Multidisciplinary 

team

The team is made up of school professionals and parents/guardians— 

those adults who know the student well. This team decides if the student

meets the criteria to receive special education services

Due process A formal process to resolve disputes between a school and the parent 

or guardian about a child’s education. It includes many options, such as

mediation, arbitration, and an impartial hearing

58 National Council on Disability/National Indian Council on Aging
Comparison of ADA, IDEA, and Section 504

What Is Each Type of Law And Its Purpose?

ADA IDEA 504

The Americans with 

Disabilities Act is a civil rights 

law to prohibit discrimination 

solely based on disability in 

employment, public services, 

and accommodations

The Individuals with 

Disabilities Education Act 

provides federal financial 

assistance to state and 

local education agencies to 

guarantee special education 

and related services to 

eligible children with 

disabilities

Section 504 of the 

Rehabilitation Act of 1973 is 

a civil rights law to prohibit 

discrimination based on 

disability in programs and 

activities, public and private, 

that receive federal financial 

assistance

Who Is Protected?

ADA IDEA 504

Any individual with a 

disability who (1) has 

a physical or mental 

impairment that 

substantially limits one 

or more life activities, 

(2) has a record of such 

impairment, or (3) is 

regarded as having 

such an impairment

Further, the person 

must be qualified for the 

program, service, or job

Children ages 3–21 who are 

determined by a multidisciplinary 

team to be eligible within one 

or more of 13 specific disability 

categories and who need special 

education and related services

Categories include autism, 

deafness, deaf-blindness, hearing 

impairments, intellectual disability, 

multiple disabilities, orthopedic 

impairments, other health 

impairments, traumatic brain injury, 

and visual impairments

Any person who (1) has a 

physical or mental impairment 

that substantially limits one 

or more major life activities, 

(2) has a record of such an 

impairment, or (3) is regarded 

as having such an impairment

Major life activities include 

walking, seeing, hearing, 

speaking, breathing, learning, 

working, caring for oneself, 

and performing manual tasks

Is There Funding to Implement Services?

ADA IDEA 504

No, but limited tax credits 

may be available for removing 

architectural or transportation 

barriers. Also, many federal

agencies provide grant funds to 

support training and to provide 

technical assistance to public 

and private institutions

Yes, IDEA provides federal 

funds under Parts B and C 

to assist states and local 

education agencies in meeting 

IDEA requirements to serve 

infants, toddlers, and youth 

with disabilities

No. State and local

jurisdictions have 

responsibility. IDEA funds

may not be used to serve 

children found eligible under 

Section 504

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 59
What Are the Procedural Safeguards?

ADA IDEA 504

The ADA does not 

specify procedural 

safeguards related to 

special education; it does 

detail the administrative 

requirements for 

complaint procedures 

and consequences for 

noncompliance related 

to both services and 

employment

IDEA requires written 

notice to parents regarding 

identification, evaluation, 

and/or placement. Further,

written notice must be 

made prior to any change 

in placement. The Act

delineates the required 

components of the written 

process

Section 504 requires notice to 

parents regarding identification, 

evaluation, and/or placements

Written notice is recommended

Notice must be made only 

before a significant change in 

placement. Following IDEA

procedural safeguards is one 

way to comply with Section 504 

mandates

What Are The Evaluation and Placement Procedures?

ADA IDEA 504

The ADA does not 

specify evaluation and 

placement procedures; 

it does specify 

provision of reasonable 

accommodations for 

eligible activities and 

settings. Reasonable

accommodations may 

include, but are not 

limited to, redesigning 

equipment, assigning 

aides, providing written 

communication in 

alternative formats, 

modifying tests, 

redesigning services to 

accessibility locations, 

altering existing 

facilities, and building 

new facilities

A comprehensive evaluation 

is required. A multidisciplinary

team evaluates the child, and 

parental consent is required 

before evaluation. IDEA

requires that reevaluations 

be conducted at least every 

three years. For evaluation

and placement decisions, 

IDEA requires that more 

than one single procedure 

or information source be 

used; that information from 

all sources be documented 

and carefully considered; 

that the eligibility decision 

be made by a group of 

persons who know about the 

student, the evaluation data, 

and placement options; and 

that the placement decision 

serves the student in the least 

restrictive environment. An IEP

meeting is required before any 

change in placement

Unlike IDEA, Section 504 

requires only notice, not 

consent, for evaluation. It is

recommended that a district 

obtain parental consent

Like IDEA evaluation and 

placement procedures, 

Section 504 requires that 

information be obtained 

from a variety of sources 

of the area of concern; that 

all data is documented 

and considered; and 

those decisions are made 

by a group of persons 

knowledgeable about the 

student, evaluation data, 

and placement options

Section 504 requires that 

students be educated 

with their peers without 

disabilities to the maximum 

extent appropriate

Section 504 does not require 

a meeting for any change in 

placement

60 National Council on Disability/National Indian Council on Aging
What Are the Due Process Procedures?

ADA IDEA 504

The ADA does not delineate 

specific due process procedures

People with disabilities have the 

same remedies that are available 

under Title VII of the Civil Rights 

Act of 1964, as amended in 

1991. Thus, individuals who are

discriminated against may file 

a complaint with the relevant 

federal agency or due process 

in federal court. Enforcement

agencies encourage informal 

mediation and voluntary 

compliance

IDEA delineates 

specific requirements 

for local education 

agencies to provide 

impartial hearings for 

parents who disagree 

with the identification, 

evaluation, or 

placement of a child

Section 504 requires local education 

agencies to provide impartial 

hearings for parents who disagree 

with the identification, evaluation, or 

placement of a student. It requires

that parents have an opportunity 

to participate in the hearing 

process and to be represented by 

counsel. Beyond this, due process

details are left to the discretion of 

the local education agency. It is

recommended that districts develop 

policy guidelines and procedures

(Disability Rights Education & Defense Fund)

Six Principles of the Individuals with 

Disabilities Education Act (IDEA)

IDEA was enacted by the Federal Government 

to ensure that all children with disabilities are 

provided with special education and related 

services designed to meet a child’s “unique 

needs and prepare them for further education, 

employment, and independent living” (Saleh).

IDEA is designed around six legal principles of 

student rights and public school responsibilities. 

When a parent disagrees with a school about their 

child’s education, the complaint will address one 

or more the six principles, which are (1) FAPE, (2) 

Appropriate Evaluation, (3) Individualized Education 

Plan, (4) Least Restrictive Environment, (5) Parent 

Participation, and (6) Procedural Safeguards.

(1) Free Appropriate Public Education (FAPE). 

Each word in the acronym has a specific 

legal meaning.

● Free means that every child with a 

disability is eligible for special education 

services at no cost.

● Appropriate means that special education 

services provided are appropriate to that 

individual student’s needs.

● Public means the public school system 

must educate all students regardless of 

disability.

● Education includes special education, 

general education, and related services.

(2) Appropriate Evaluation. A qualified and 

trained team of evaluators use sound 

evaluation materials and procedures in 

a timely and non-discriminatory way to 

determine whether to recommend a child’s 

eligibility for special education services 

(Saleh).

(3) Individualized Education Program 

(IEP). The IEP is a written document that 

is developed by an IEP team (parents/

guardians and special education providers) 

to establish annual education goals, 

services, supplementary aides (i.e., assistive 

technology, auditory screenings, etc.) 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 61
and placement of services (i.e., general 

education classroom or special education 

classroom).

1. The purpose of the IEP is to discuss 

how to provide meaningful educational 

benefits. The intent is to raise student 

expectations, detail what is appropriate 

progress, and to plan for transition into 

postsecondary education, employment, 

and independent living.

(4) Least Restrictive Environment (LRE).

There is a strong emphasis on placement 

of special education children in a general 

education setting. The IEP team must 

explore ways (classroom modifications, 

supplemental aids and services, alternative 

instructional methods) to enable a child’s 

participation in a general education 

classroom (Saleh).

(5) Parent Participation. IDEA states that 

parents are full and equal participants in all 

aspects of their child’s special education 

program, and therefore participate in 

placement decisions. When appropriate, the 

student is also a member of the team.

● At age 14, transition plans must be 

included in the IEP and require that the 

student be a member of the IEP team.

(6) Procedural Safeguards. These written 

procedures must be given to parents 

and students at each IEP meeting. The 

safeguards ensure parents have access 

to information pertaining to their child’s 

placement and transition planning, as 

well as the steps to follow to resolve 

disagreements regarding the placement of a 

student.

Part B of IDEA: Special education for 

children aged 2–21

Part B of IDEA provides federal funding and 

provisions on how special education and related 

services are to be provided to eligible children 

aged 3 to 21. It details the six principles of IDEA 

and how the Federal Government will monitor 

and enforce the implementation of IDEA (Center 

for Parent Information & Resources). In tribally 

controlled and BIE schools, they enter into a 

Memorandum of Understanding regarding early 

intervention and preschool programs (ages 3–5).

The IEP is the cornerstone of IDEA. It is at 

the annual Individualized Education Program 

(IEP) meetings that a special education plan for 

the child is developed for the coming year. The 

components of an IEP are:

1. Vision: The parent and student’s vision for 

the student in the short- and long-term.

2. Present levels of performance (e.g., 

academics, behaviorally)

3. Goals (related to the present levels of 

performance) and sometimes objectives

4. Reporting progress: How and when 

progress will be reported to the parent

5. Services to be provided (i.e., special 

education instruction and/or related service)

6. Supplementary aids and services (e.g., 

nursing services, audiology, training in use 

of assistive technology)

7. Modifications for school personnel (e.g., 

providing an audio book instead of a 

paperback)

8. Hours of services (by week, month, 

semester, or year)

62 National Council on Disability/National Indian Council on Aging
9. Placement (also called setting) of services

10. Transition Plan for students 14 and older 

(see details below).

11. Prior written notice (Every proposal is 

written down in the IEP, and the team 

decides whether to accept or reject the 

proposal and why)

12. Signature page of who attended the IEP 

meeting

Transition Plans: For students 14 and older, 

it is mandatory to develop a plan for transition to 

life after high school. The plan must reflect the 

student’s interests and skills. A transition plan 

requires:

1. The student be invited to the IEP.

2. Annual transition goals that lead to 

successful post–high school outcomes.

a. Postsecondary education or vocational 

training goals

b. Employment goals

c. Independent living goals

3. The transition activities/services and person 

or agency involved in helping the student 

achieve each goal.

4. Representation by local agencies such 

as Vocational Rehabilitation to discuss 

transition goals and available services to 

support the goals.

5. Measurement and documentation of 

progress toward annual goals. For example:

a. Creating a portfolio that includes the 

student’s resume, work samples, 

progress reports, work experience, and 

reviews from supervisors

b. Taking the ASVAB (required test to join a 

U.S. military service)

c. Application to the local community 

college

When Do Special Education 

Services End?

Upon graduation from high school, students 

no longer receive services under IDEA and 

instead are protected from discrimination by the 

Americans with Disabilities Act of 1990 (ADA) 

and Section 504 of the Rehabilitation Act of 1973.

How Postsecondary Education 

Supports Students with Disabilities

Under Section 504 of the Rehabilitation Act of 

1973, students are responsible for telling the 

postsecondary institution they have a disability. 

They are required to provide documentation to 

demonstrate the existence of a disability and 

the need for academic adjustments (often called 

accommodations) or auxiliary aids and services.

Students are expected to advocate for their 

needs and to work collaboratively with the 

postsecondary school’s disability coordinator. 

According to the U.S. Department of Education, 

the keys to success for students with disabilities 

include:

1. Understanding your disability (strengths, 

functional limitations, difficulties in the past, 

what academic adjustments or auxiliary 

aids and services helped you to overcome 

challenges)

2. Accepting responsibility and advocating 

for yourself because the institution works 

directly with the student (not parents of 

school staff)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 63
3. Taking advantage of the institution’s 

services, such as preparatory courses, 

tutoring, and workshops such as study skills

4. Learning time management skills

5. Acquiring computer skills

6. Getting involved on campus

(Office for Civil Rights)

Post–High School Employment

For youth with disabilities, the transition from 

school to adulthood is an important time to 

prepare yourself for future employment and paying 

living expenses. Support may be needed in the 

areas of education, vocational training, income 

support, health insurance coverage, health care, 

transportation, life skills, housing, etc. (youth.gov).

The resources section lists organizations that 

assist students with disabilities transition to life 

after high school graduation.

Tips for IEP Meetings

Arranging an IEP Meeting

A parent advocacy network from Wilton, 

CT, published a parent handbook, “Bringing 

Knowledge to the Table,” that explains parents’ 

rights for calling/attending IEPs.

1. A parent can ask for an IEP meeting any time

2. IEP Meetings should be held when the 

parent can attend

3. Call the school immediately if you cannot 

attend the scheduled IEP. Ask that the 

meeting be rescheduled at a time you can 

attend.

4. The written notice of the meeting should 

state the purpose, date, time, location, and 

participants of the meeting

5. Notify the school if you intend to bring 

someone from outside the school (e.g., 

a friend, relative, advocate, or outside 

evaluator, someone who has knowledge of 

your child’s needs, someone to take notes 

while you listen)

6. Ask for an interpreter, if needed

Preparing for an IEP Meeting

1. Request a draft of the proposed IEP and 

review it before the meeting

2. Request recent evaluations if applicable

3. From the draft IEP, write a list of questions 

or concerns

4. Contact the school to resolve the questions 

or concerns before the meeting

5. Get support from other parents or advocacy 

groups. Look in the Resources Section of 

this chapter to find support groups in your 

community. You can also find support groups 

online or through social media.

6. Think about or write down:

a. Your child’s strengths, challenges, 

preferences, learning styles

b. What is needed for your child to succeed 

across curricula and settings.

c. Samples of your child’s work, art, etc.

Participating in the IEP Meeting

1. If you cannot attend in person, attend online 

or by phone

2. Remind the school, if necessary, that you 

will not sign a prepared IEP but wish to be 

involved in the writing of the IEP

3. Ask questions and share knowledge about 

your child with the team

64 National Council on Disability/National Indian Council on Aging
4. You may tape-record the meeting

5. Bring another parent, advocate, or note 

taker to the IEP meeting

6. Know your child’s rights and discuss these 

rights with the team

At the Close of the IEP Meeting

1. Be certain that you understand your child’s 

IEP. If you don’t understand the IEP, ask the 

school to explain.

2. Obtain a copy of the IEP (save all IEPs in a 

location where you can find them).

3. Singing off on an IEP means you agree with 

the plan. Do not sign the IEP if it does not 

meet your child’s needs.

4. Request a dispute resolution process if you 

do not agree with the plan

5. Remember that the IEPs must be reviewed 

at least once per year

Problem Solving and Procedural 

Safeguards

At times, parents and schools do not agree 

on issues affecting a child’s education. 

Public, tribal, BIE schools, or private schools 

that receive federal funding are required by 

IDEA to provide procedural safeguards for 

students and families to solve disputes. The 

disputes can be resolved by informal or formal 

approaches (Center for Parent Information and 

Resources).

Informal Approaches to Dispute Resolution:

1. An IEP Review

a. The IEP team meets to discuss the 

parent’s concerns and works toward a 

solution that is agreeable to all parties, 

such as a temporary change in placement 

to see how the student performs in the 

temporary setting.

2. A Facilitated IEP meeting

a. A neutral facilitator, who is not a 

member of the IEP team, leads the 

team through an IEP meeting to find a 

resolution.

Formal Approaches to Dispute Resolution:

1. Mediation

a. A qualified, trained, impartial third person 

mediator is provided and paid for by the 

state.

b. Both parties volunteer to participate.

c. Agreements are provided in writing to 

both parties.

d. Agreements are confidential and cannot 

be used in future due process hearings 

or civil law proceedings.

2. Filing a state education agency (SEA) or BIE 

complaint

1. The complaint must describe what 

requirement of IDEA the school has 

violated (See 6 principles of IDEA).

2. Complaints can be filed by parents, an 

organization, or an individual.

3. The SEA/BIE office must resolve the 

parents’ complaint within 60 calendar 

days and in writing.

3. Due Process Hearing—considered a legal 

proceeding, much like a trial

1. An attorney files a confidential written 

due process complaint on behalf of 

the family to the school district or BIE 

school.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 65
2. The school district/BIE must convene 

a resolution meeting (hearing) by the 

timeline outlined in IDEA.

3. Parents and the school present evidence 

using witnesses, testimony, documents, 

and legal arguments via their respective 

attorneys.

4. An impartial hearing officer presides over 

the due process hearing

5. The hearing officer’s decision is final, 

unless appealed.

(Center for Parent Information and Resources)

Part C of IDEA: Early Intervention—

Birth to 36 Months

The first weeks and months of an infant’s life can 

affect a person’s entire life, including success 

in school. Data shows that families across the 

country often are not informed early enough 

about the importance of early intervention. Too 

often children with significant disabilities may be 

two or three years old before they are referred for 

assessment and early intervention.

Part C requires each state to implement a 

public awareness program and “Child Find” 

activities to find infants and toddlers who 

may be eligible for early intervention services 

(Congressional Research Services 2019).

Under Part C of IDEA, the following services 

must be provided at no cost to families:

a. Child Find services: Identify, locate, and 

evaluate all children with disabilities, 

regardless of the severity of disability

b. Local school district provides services for 

children residing on a reservation or within a 

school district’s attendance area

c. Development and review of an Individual 

Family Support Plan (IFSP)

d. Service coordination

Early intervention focuses on helping eligible 

babies and toddlers learn basic and new skills 

that typically develop during the first three years 

of life, such as:

■ Physical (reaching, rolling, crawling, walking)

■ Cognitive (thinking, learning, solving problems)

■ Communication (talking, listening, 

understanding)

■ Social/emotional (playing, feeling secure and 

happy)

■ Self-help (eating, dressing)

The types of early intervention services a 

family receives depends on the needs of the child 

and might include:

* Family training

* Counseling

* Home visits

* Occupational therapy

* Physical therapy

* Speech therapy

* Hearing loss services

* Health

* Nutrition

* Social work

* Transportation

* Service coordination

* Assistive technology & services

(Centers for Disease Control and Prevention)

66 National Council on Disability/National Indian Council on Aging
Natural Environments

All young children tend to thrive when they’re 

in familiar surroundings and with the people 

and objects that are most dear to them. For 

young children with disabilities, familiar and 

reassuring surroundings are an essential 

part of their early intervention services. The 

law says:

■ “Early intervention services must be 

provided in natural environments, including 

the home and community settings in which 

children without disabilities participate, to 

the maximum extent that is appropriate” 

(Sec. 303.12).

■ “‘Natural environments’ are those settings 

that are natural or normal for the child’s 

same-age peers who have no disabilities” 

(Sec. 303.18).

Natural environments help a child to model 

the behavior and skills of family and peers. 

A child will be more comfortable to practice 

new skills and for the family to determine what 

interventions do and do not work for the child 

(Pacer Center).

Individual Family Service 

Plan (IFSP)

1. Before Part C services begin, an Individual 

Family Service Plan (IFSP) is developed. The 

IFSP is developed by a team, which includes 

the parents and all providers who work with 

the child and the family

2. The IFSP describes the child’s:

a. Present level of development (what the 

child can do)

b. The family’s strengths and needs

c. The specific services to be provided to 

the child and the family

d. A plan to transition to public school

(Centers for Disease Control and Prevention)

State policies determine whether early 

intervention services are free. You may 

be charged a fee based on what you earn. 

Some services may be covered by your 

health insurance, Medicaid, Children’s Health 

Insurance Program, or Indian Health Services 

(Center for Parent Information and Resources, 

Overview).

Family and Child Education (FACE): 

Keeping the Circle Alive

(An Example of an effective early 

intervention AI/AN model)

FACE celebrated a 30-year anniversary in 2020. 

FACE operates in BIE schools and is a twogeneration model emphasizing family literacy 

through integrated early childhood and parental 

involvement. FACE was developed specifically by 

and for American Indian families. Highly trained, 

local, indigenous professionals are paired with 

families from pregnancy through a child’s first 

years of life.

The core beliefs and practices of the FACE 

model are:

■ Parents / primary caregivers are seen as a 

child’s first and most influential teacher

■ Parents participate in their child’s learning

■ Culture and language are supported and 

celebrated

■ Services are provided in the home, at 

school, and in the community

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 67
The activities of the FACE model include:

■ Personal visits by indigenous professionals 

with parents/primary caregivers

■ Family circles to form group connections

■ Screenings (such as vision and hearing 

screenings)

■ Adult education

■ Parent time (Parents learn together)

■ Parent and Child Together Time (PACT®)

■ Community resources

■ Community Advisory Council

AI/AN Organizations Supporting Education

Who What Website, Contact Info

American 

Indian College 

Fund

Provides college bridge programs, 

scholarships, and student support services 

for American Indian students that attend 

or plan to attend qualified tribal colleges 

and universities

American Indian College Fund

8333 Greenwood Blvd

Denver, CO 80221

Phone: 303-426-8900

Tollfree: 800-776-FUND (3863)

Website:

https://collegefund.org

American 

Indian Higher 

Education 

Consortium 

(AIHEC)

Tribal Colleges and Universities (TCUs) 

operate more than 75 campuses in 

16 states—virtually covering Indian 

Country—and serve students from well 

more than 250 federally recognized 

Indian tribes

TCUs vary in enrollment (size), focus 

(liberal arts, sciences, workforce 

development/training), location 

(woodlands, desert, frozen tundra, 

rural reservation, urban), and student 

population (predominantly American 

Indian). However, tribal identity is the

core of every TCU, and they all share the 

mission of tribal self-determination and 

service to their respective communities

AIHEC

121 Oronoco Street

Alexandria, VA 22314

Phone: 703-838-0400

Fax: 703-838-0388

Website:

http://www.aihec.o

This web page has a map of 

TCUs, profiles of the schools, and 

majors and degrees offered

http://www.aihec.org/who-weserve/TCUmap.

Benefits.gov Assistance for Indian Children with Severe 

Disabilities

Provides special education and related 

services to Native American children with 

severe disabilities, in accordance with 

IDEA

https://www.benefits.go

benefit/792

68 National Council on Disability/National Indian Council on Aging
Who What Website, Contact Info

Bureau 

of Indian 

Education 

(BIE)

Parent Training Centers by State (Bureau 

of Indian Education, Special Education)

This directory shows which states are in 

each of the six BIE regions. It provides the

contact information for each region

Parent Training Center

https://www.bie.edu/sites/default/file

documents/idc-020177.pd

Bureau of Indian Education (BIE)

Division of Performance and 

Accountability

Attn: Marcy Oliver, Education 

Specialist-Special Education

Marcy.Oliver@bie.e

1011 Indian School Rd NW Ste 332

Albuquerque, New Mexico 87104

Fax: 505-563-5453

Directory of BIE schools:

https://www.bie.edu/school

directory

BIEs

Safeguards 

and Parental 

Rights

The procedures BIE and tribally controlled 

schools are required to follow if there is a 

dispute between a parent and the school 

about how special education services are 

provided to a student

The written procedures to protect 

special education students and 

family rights

https://www.bie.edu/sites/defaul

files/documents/idc2-087462.pd

Education 

for Parents of 

Indian Children 

with Special 

Needs (EPICS) 

Project

Parent Center that serves 22 tribes in New 

Mexico

EPICS serves parents of Native American 

children with disabilities, developmental 

delays, special health care needs, and 

Deaf or Hard of Hearing who are in the BIE 

and NM school systems

EPICS provides comprehensive training 

on advocacy, leadership, support, and 

capacity building

Training is provided to educate parents 

on their rights, responsibilities, and 

protections as they develop the skills 

necessary to effectively participate in the 

planning and decision making relating 

to Early Intervention, Educational, and 

Transitional Services to meet their child’s 

specific and unique needs

EPICS

2201 Buena Vista Dr. SE, Ste 201

Albuquerque, NM 87106

Toll-Free: 888-499-2070 Phone: 

505-767-6630

Email: emartin@epicsnm.or

Website:

https://www.epicsnm.or

Family 

and Child 

Education 

(FACE)

FACE was initiated in 1990, and currently 

has programs in 47 Bureau of Indian 

Education (BIE)–funded schools

A program for children ages 0–8, parents, 

and primary caretakers. Built on a model

that respects American Indian culture and 

traditions and aims to reform education 

in three settings—home, school, and 

community

FACE

Acting Director, Sue Bement

sue.bement@bie.e

952 851-5423 (in Minnesota)

■ FACE Coordinators or School 

Principals are encouraged 

to contact her with general 

questions

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 69
Who What Website, Contact Info

Indian 

Education 

Bureaus or 

Departments 

at each State’s 

Education 

Department

The Indian Education Contacts for each 

State’s Education Department as of 

November 19, 2019, are in the link in the 

next column

Indian Education contacts are 

listed in alphabetical order by 

state:

https://www.parentcenterhub.or

state-indian-education-contacts/

The National 

Center on 

Tribal Early 

Childhood 

Development

The National Center on Tribal Early 

Childhood Development assists tribal 

grantees and administration with 

implementation of Child Care and 

Development Fund programs

Targeted technical assistance services 

support more than 539 Federally 

recognized tribes, either directly or 

through tribal consortia

Services include:

■ Toll-free info/referral line

■ Technical assistance materials

■ A peer learning and leadership 

network

■ National and regional webinars

■ Technical assistance (in-person and 

distance learning)

■ On-site and remote consultations

■ Collaboration between states, tribes, 

and local early childhood and schoolage care education programs

Send questions and requests to: 

ncted@ecetta.inf

Phone: 877-296-2401

Website:

https://childcareta.acf.hhs.g

sites/default/files/public/nctecd_

overview.pd

Tribal Child Care and 

Development Fund (CCFD)

contacts by state:

https://childcareta.acf.hhs.gov/sit

default/files/public/tribal_grantee_

contact_list_june_2021.pd

The National 

Indian 

Child Care 

Association

The National Indian Child Care Association 

is a representative American Indian and 

Alaska Native organization serving the 268 

Tribal CCDF grantees that represent tribal 

communities across the nation

Tribal childcare and early childhood 

programs provide our children, families, 

and communities with high-quality 

childcare services across Indian Country

They provide education, training, and 

professional development opportunities to 

help promote the success of childcare and 

development professionals supporting 

tribal children and families

National Indian Child Care 

Association

PO Box 380

Ramona, OK 74061

To contact online:

https://www.nicca.us/conta

Website:

https://www.nicca.u

Books for sale for young children 

written for or by indigenous 

people:

https://www.nicca.us/booksto

70 National Council on Disability/National Indian Council on Aging
Who What Website, Contact Info

National Indian 

Child Welfare 

Association

NICWA is dedicated to the well-being of 

American Indian children and families

Works to address the issues of child abuse 

and neglect through training, research, 

public policy, and grassroots community 

development

National Indian Child Welfare 

Association

5100 S Macadam Ave, Suite 300

Portland, OR 97239

Phone: (503) 222-4044

Email: info@nicwa.or

Website:

https://www.nicwa.or

National Indian 

Education 

Association

NIEA provides a broad range of resources 

for students, educators, and parents

Digital Access to Native Texts: Links are on 

the following website. Scroll to mid-page

and click on “literacy resources” and scroll 

down for the link to each book

https://www.niea.or

virtual-resources-for-parents-and-teachers

■ Native Digital Texts for Grades K–4

■ Native Digital Texts for Grades 5–12

Virtual Resources for Schools, 

Teachers, Parents, and Students

On the Indianapolis Public Library 

digital books platform:

Apply for a library card

https://libbyapp.com/welcom

Digital books:

https://www.uniteforliteracy.co

Reading Rockets

■ Lists books by theme and 

grade level with an “adventure 

pack” or lesson plans for 

hands-on activities that are 

paired to the list of books

https://www.readingrocket

.org/article/reading-adventurepacks-familie

Native American Children’s 

Literature Recommended 

Reading List, K–12

https://www.firstnations.or

wp-content/uploads/2018/11/

Revised_Book_Insert_Web_

Version_March_2018.pd

Digital Access to Native Texts: Links 

are on the following website, scroll 

to mid-page and click on “literacy 

resources” and scroll down for the 

link to each book

https://www.niea.org/virtualresources-for-parents-and-teache

■ Native Digital Texts for 

Grades K–4

■ Native Digital Texts for 

Grades 5–12

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 71
Who What Website, Contact Info

National 

Indian Head 

Start Directors 

Association

(NIHSDA)

NIHSDA strives to preserve and respect 

indigenous identity while actively 

providing high-quality advocacy, 

leadership development, and professional 

growth opportunities to current and future 

early care and education leaders

NIHSDA

P.O. Box 60

Norman, OK 73070

Phone: 405-360-2919

Email: nihsdainfo@nihsda.or

Website: https://www.nihsda.or

National 

Indian Parent 

Resource 

Center

(NIPRC)

The mission of the NIPRC is to strengthen 

our community through support, 

education, and encouragement for 

families whose Native American tribal 

children, ages birth to 26, are experiencing 

disabilities or learning challenges

Email: info@nipic.or

Phone: 541-244-1822

Facebook:

https://www.facebook.co

NationalIndianParentInformation

Center/

National 

Technical 

Assistance 

Center on 

Transition

(in partnership 

with the 

Bureau 

of Indian 

Education)

Taxonomy for Transition Programming 2.

A model for planning, organizing, and 

evaluating transition education services 

and programs

https://transitionuniverse.file

wordpress.com/2018/03/tax

trans_prog_0.pd

Native 

American 

Advocacy 

Program

(NAAP)

NAAP serves persons residing on and off 

the lands of the tribal nations in South 

Dakota

NAAP provides independent living 

services for people with disabilities and 

help to reclaim Lakota Language, culture, 

and spirituality by promoting education 

and healthy lifestyles for our youth 

through culturally based strategies

Mailing Address:

NAAP

Box 277

Herrick, SD 57538-0277

Location:

34838 U.S. Hwy 

Herrick, SD 57538-0277

Phone: 605-775-2147

Fax: 605-775-2148

Website: https://mbullbear.wixsit

.com/lakotayout

Native 

American 

Parent 

Technical 

Assistance 

Center

(NAPTAC)

NAPTAC is a project within EPICS to 

provide training and technical assistance 

to Parent Training Information Centers 

(PTIs) and Community Parent Resource 

Centers (CPRCs) nationwide on providing 

effective, culturally responsive services to 

Native American families of children and 

youth with disabilities

To contact, use online form:

https://naptac.org/contact-us

Website: https://naptac.org

72 National Council on Disability/National Indian Council on Aging
Who What Website, Contact Info

Navajo 

Nation Office 

of Special 

Education and 

Rehabilitation 

Services

(NNOSERS)

NNOSERS operates three programs

“Growing in Beauty” meets the needs of 

Navajo children with delays or disabilities 

from birth to five years of age while 

honoring the unique culture and language 

of the Navajo people

Vocational Rehabilitation services are 

provided to eligible American Indians with 

disabilities who are interested in going to 

work. Invite NNOSERS to Transition IEP

meetings for youth who will be graduating 

from high school

http://www.nnosers.or

NNOSERS

PO Box 1420

Window Rock, AZ 86515

928-871-6338

1-866-341-9918

Partnership 

with Native 

Americans

(PWNA)

PWNA serves hundreds of tribal 

communities in nine priority states 

throughout the Northern Plains and 

Southwest regions of the U.

We prioritize underserved, underresourced and geographically isolated 

Native communities with limited 

employment opportunities, addressing 

immediate relief and working toward longterm solutions

Website: http://www

nativepartnership.org/site

PageServer?pagename=pwna_

home

Service areas: MT, ND, SD, 

NE, CO, UT, NM, AZ, CA (area 

bordering AZ)

http://www

.nativepartnership.org/sit

PageServer?pagename=pwna_

impact_results#service-area

Sacred Circles Sacred Circles, which was originally 

called the Intertribal Deaf Council, is a 

community of Deaf Native Americans that 

communicates online through Facebook 

and holds get-togethers

Sacred Circles mission:

“To provide education, information & 

referral, and training about American 

Indians, Alaska Natives and First Nations 

Indians who are Deaf, Deaf-Blind, Hard 

of Hearing and late-deafened to tribal 

councils, family members and other 

interested parties in order to improve the 

social, educational, vocational, health and 

spiritual well-being of this population.”

Executive Director:

Teresa Norris

executive.director@deafnativ

.co

VP: (971) 239-5697

Website:

http://www.deafnative.co

Deaf Native Americans Facebook: 

https://www.facebook.co

groups/29798247066

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 73
Resources For Early Intervention

Who What Website, Contact Info

Birth to Five: Watch 

Me Thrive—Families

U.S. Department o

Health and Human 

Services

Office of Early 

Childhood 

Development

Resources from the Center on the Social 

and Emotional Foundations of Early 

Learning

Resources include tools for the family 

on playtime, developmental milestones, 

understanding behavior, developing 

communication, and independent skills 

in your child

Website: https://www.ac

.hhs.gov/ecd/childhealth-developmen

watch-me-thrive/families/

tips-and-resources

CADRE CADRE was designated by the Office of 

Special Education Programs in the U.

Department of Education as the:

■ National Center on Appropriate 

Dispute Resolution in Special 

Education on behalf of the Office of 

Special Education

CADRE delivers high-quality technical 

assistance, informational support, 

and other services to state education 

agencies (Part B), early intervention 

lead agencies (Part C), federally funded 

parent centers, local education agencies 

and early intervention providers, 

dispute resolution practitioners, family 

members, and other stakeholders

CADRE

576 Olive St, Suite 300

Eugene, OR 97401

Phone: (541) 359-4210

Fax: (458) 215-4957

Email:

cadre@directionservice.or

Website:

http://www.cadreworks.or

Center for Disease 

Control and 

Prevention

Information for Parents of Infants and 

Toddlers (Birth to age three) on:

■ Diseases and conditions

■ Safety in the home and community

■ Raising healthy children

■ A child’s developmental milestones 

and schedules

■ Infant vaccination requirements

Website: https://www.cd

gov/parents/infants/index

html

Center for Parent 

Information and 

Resources (CPIR)

c/o Statewide Parent 

Advocacy Network 

(SPAN)

CPIR is a “central hub” for information 

for parents of children with disabilities 

and has information on early 

intervention, eligibility, evaluation 

and assessment, ISFP, timelines, and 

information on who pays for what 

services

Center for Parent 

Information and Resources 

(CPIR)

c/o Statewide Parent 

Advocacy Network (SPAN)

35 Halsey St., 4th Floo

Newark, NJ 07102

74 National Council on Disability/National Indian Council on Aging
Who What Website, Contact Info

Phone: 973-642-8100

Email: mrodriguez@

spanadvocacy.or

Website:

https://www.parentcenterhu

.org/ei-overview

For information specific 

to infants and the early 

intervention system 

available in each state:

https://www

.parentcenterhub.org/babie

Head Start—Early 

Learning and 

Knowledge Center

(U.S. Departmen

of Health & Human 

Services)

Head Start helps young children 

from low-income families prepare to 

succeed in school through local Head 

Start Programs and Early Head Start 

programs

Head Start delivers services to children 

and families in core areas of early 

learning, health, and family well-being 

while engaging parents as partners 

every step of the way

Website:

https://eclkc.ohs.acf.hhs.

The link below explains how 

Head Start programs give 

support to all children who 

are and are not eligible for 

services under IDEA

https://eclkc.ohs.acf.

.gov/publication/serviceschildren-who-do-notqualify-ide

Head Start Center locator

https://eclkc.ohs.acf.

.gov/center-locato

Head Start Center for 

Inclusion

The Head Start Center for Inclusion is 

committed to supporting early childhood 

educators to create inclusive learning 

experiences for all children

The infant and toddler web page offers 

information on learning opportunities, 

activity matrices, routines for infants 

and toddlers, and FAQs

Head Start for Inclusion

5001 25th Ave NE #201e

Seattle, WA 98105

Email: hscenter@uw.ed

Phone: 206-221-0569

Website:

https://headstartinclusion

org/tip-sheets/

infant-and-toddlers/

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 75
Who What Website, Contact Info

Pacer Center Provides guides and activities to foster 

early literacy and school success

Early Literacy Activities you can do to 

encourage your child’s early literacy 

skills:

■ Listening

■ Speaking

■ Reading

■ Writing skills

Guide the development of communication 

from three months to age five

Making the Move from Preschool to 

Kindergarten:

Guidance on how to help your child 

be successful when transitioning from 

preschool special education services 

into elementary school

PACER Center

8161 Normandale Blvd

Minneapolis, MN 55437

Phone: 952-838-9000

Website:

http://www.pacer.or

Early Literacy Activities: 

https://www.pacer.org/e

early-literacy/parents-playa-key-role.as

Making the Move from 

Preschool to Kindergarten: 

https://www.pacer.or

parent/php/PHP-c196.pd

Parents as Teachers 

National Center

(A FACE Partner; See 

AI/AN organizations)

Trains staff at affiliate organizations. The

focus of the training and certification is:

■ Personal Visits

■ Group Connections

■ Resource Networks

■ Child Screening

Diane Givens

314-432-4330 ext. 26

Email:

diane.givens@parent

asteachers.or

To find a Parents as Teachers 

affiliate in your community 

or state:

http://ebiz.patnc.or

eBusiness/

ProgramLocations.asp

Zero To Three Zero to Three resources help you (the 

parent) tune in to what makes your child 

tick, and to guide you in thinking about the 

best way to meet your child’s individual 

needs. Online resources include

■ Child development by age and stage

■ Social emotional development

■ Positive parenting approaches

■ Early learning

■ Play

For general inquiries:

1255 23rd Street, NW, 

Suite 350

Washington, D.C. 200

202-638-1144

https://www.zerotothre

.org/resources/series

parent-favorites

76 National Council on Disability/National Indian Council on Aging
Who What Website, Contact Info

■ Sleep

■ Brain development

■ Temperament

■ Discipline

■ Challenging behavior

■ Fatherhood

Resources For K- 12 Education

Who What Website, Contact Info

CADRE CADRE was designated by the Office of 

Special Education Programs in the U.

Department of Education as the:

■ National Center on Appropriate Dispute 

Resolution in Special Education on 

behalf of the Office of Special Education

CADRE delivers high-quality technical 

assistance, informational support, and other 

services to state education agencies (Part 

B), early intervention lead agencies (Part 

C), federally funded parent centers, local 

education agencies and early intervention 

providers, dispute resolution practitioners, 

family members, and other stakeholders

CADRE

576 Olive St, Suite 300

Eugene, OR 97401

Phone: 541-359-4210

Fax: 458-215-4957

Email:

cadre@directionservice.or

Website:

http://www.cadreworks.or

Center for Parent 

Information and 

Resources

(Parent Center 

Hub)

Each state has at least one parent center that 

employs advocates who are experts on IDEA 

who coach families in how to work with their 

child’s school. Advocates can also attend IEP

The website has an extensive library for all 

things special education, including birth to 

36 months (Part C of IDEA), age 3 to 5, and 

5–21 (Part B of IDEA)

Library is organized A to Z. Some sample

topics are:

■ Accommodations

■ Assistive Technology

■ Bullying

■ Behavior

■ Dispute resolution

■ Early childhood

Center for Parent 

Information and Resources 

(Parent Center Hub)

Website:

https://www.parentcente

hub.org

Native American resources:

https://www

.parentcenterhub.or

resourcelibrary/index/n/n1/

Resource library:

https://www.parentcente

hub.org/resourcelibrary

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 77
Who What Website, Contact Info

■ Inclusion

■ LRE/Placement

■ Parent Support and more

Find your state or region’s 

parent center at:

https://www.parentcente

hub.org/find-your-center

The Federation 

for Children with 

Special Needs

This federation provides resources, support, 

information, and assistance to families of 

children with special needs

Phone: 617-236-7210

800-331-0688

Email: info@fcsn.or

Website: https://fcsn.org

programs/

Interagency 

Autism 

Coordinating 

Committee

Webinar Series: Transition Aged Youth on the 

Autism Spectrum

1.  Making Health Care Transition Work fo

Youth with Autism: Youth and Parent 

Perspectives and National Resources

2.  Transportation and Mobility Options t

Support Post School Transition for Youth 

with Autism

3.  Expanding Career Pathways for Yout

and Young Adults on the Autism 

Spectrum: Employment as a Social 

Determinant of Health

https://iacc.hhs.go

meetings/autism-events/

national-autism-coordinator/

transition-aged-youth/

Job 

Accommodation 

Network

JANs A To Z resources library of Disabilities 

and Accommodations to assist individuals 

and organizations comply with the 

Americans with the Disabilities Act (ADA)

A comprehensive list of 

disabilities and medical 

conditions that can be 

filtered by:

■ Disability

■ Limitation

■ Work-related function

■ Topic

■ Accommodation

https://askjan.org/a-to-z.c

National 

Disability Rights 

Network

A nonprofit membership organization for the 

federally mandated Protection and Advocacy 

Systems & Client Assistance Programs for 

people with disabilities

Members provide legal services for people 

with disabilities in all areas of life, including 

education

https://www.ndrn.or

To find a NDRN member in 

your state:

https://www.ndrn.org/abou

ndrn-member-agencies/

78 National Council on Disability/National Indian Council on Aging
Who What Website, Contact Info

National Parent 

Teachers 

Association

(PTA)

Special Education Toolkit Resources:

■ Tools for families

■ Locating special education services by 

state

■ National Organization

Other PTA Topics include:

■ Pre-K to graduation & beyond

■ Understanding federal disability and 

special needs policy

■ A Parent’s Dictionary

■ Guide to Special Education: Helpful 

Acronyms

National PTAs special 

education resources:

https://www.pta.org/hom

family-resources/SpecialEducation-Toolkit/SpecialEducation-Toolkit-Resources

Office of 

Disability 

Employment 

Policy

Employment First is a framework for 

systems change centered on the premise 

that all citizens, including people with 

significant disabilities, are capable of full 

participation in integrated employment and 

community life. The website includes videos,

webinars, data, and manuals

Office of Disability 

Employment Policy

200 Constitution Ave NW

Washington, DC 20210

Phone: 1-866-487-2365

https://www.dol.go

agencies/odep/initiatives/

employment-first

Office of Special 

Education and 

Rehabilitative 

Services: U.S. 

Department of 

Education

A transition guide to help students, families, 

and schools plan for a student’s life after 

graduation from high school

Transition Guide

https://sites.ed.gov/idea/file

postsecondary-transitionguide-august-2020.pd

Parent 2 Parent Parent 2 Parent matches parents of children 

with disabilities to other parents who have 

a child with the same or similar disability or 

issue so their parents can support each other, 

share resources, and form connections

Phone: 484-272-7368

Email:

https://www.p2pusa.or

contacts/

Website: http://p2pusa.org

Project Search Project Search operates nationwide and is 

a one-year high school transition program 

that provides real-life work experience to 

assist youth with significant disabilities make 

successful transitions from school to adult 

life. Utilizes a combination of

■ Classroom instruction

■ Career exploration

To find a Project Search 

program in your area:

https://projectsearch.us

find-a-program/

To start a Project Search 

program in your area:

https://projectsearch.us

start-a-project-search/

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 79
Who What Website, Contact Info

■ Hands-on training through worksite 

rotations in:

● Health care

● Government

● business settings

Students participate in internships to explore 

a variety of career paths, to create an 

employment goal, and acquire employability 

and marketable work skills during the 

transition from school to work

University Center 

for Excellence in 

Developmental 

Disabilities

(UCEDD)

There are 67 UCEDDs—at least one in every 

U.S. state and territory. Each UCEDD wor

with people with disabilities, members of 

their families, state and local government 

agencies, and community providers in 

projects that provide training, technical 

assistance, service, research, and information 

sharing, with a focus on building the capacity 

of communities to sustain all their residents

Many UCEDDs have a long history of providing 

culturally relevant services to the American 

Indian and Alaska Native community

Association of University 

Centers on Disabilities

Map to find the UCEDDs in 

each state:

https://www.aucd.or

directory/directory

cfm?program=UCEDD

Wrightslaw Parents, advocates, educators, and attorneys 

come to Wrightslaw for accurate, up-to-date 

information about special education law and 

advocacy for children with disabilities

Website:

https://www.wrightslaw.co

Wrightslaw has information 

specific to American Indian 

Kids with disabilities:

https://www.wrightsla

com/info/ai.index.h

The 14 Disability Categories In IDEA

Definitions and Resources

Autism (AU)

Characteristics Also called “autism spectrum disorder.” “Considered a

form of developmental delay, often people engage in 

repetitive activities, stereotyped movements, resistance 

to environmental change or change in daily routines, 

and unusual responses to sensory experiences.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

80 National Council on Disability/National Indian Council on Aging
Definitions and Resources

Centers for Disease Control and 

Prevention

Family Resources

https://www.cdc.gov/ncbddd/autism/links.h

The National Autism Center

Provides A Parent’s Guide to EvidenceBased Practice and Autism

https://www.nationalautismcenter.org/resource

for-families/

The Autism Society of America

Has a database of resources by state

https://autismsociety.org/contact-us

Autism Now

A national autism resource and 

information center

https://autismnow.org

The Autism Wandering Awareness 

Alerts Response and Education 

(AWAARE) Collaboration

Prevents wandering incidents and 

deaths within the autism community

https://awaare.nationalautismassociation.or

Organization of Autism Research

Published five Life Journey 

guidebooks that are available online

https://researchautism.org

A Parent’s Guide to Assessment

https://researchautism.org

resources/a-parents-guide-to-assessment/

A Guide for Transition to Adulthood

https://researchautism.org

resources/a-guide-for-transition-to-adulthood/

Operation Autism

Online resources for military families 

with children with autism spectrum 

disorder

https://operationautism.org

Deaf-Blindness

Characteristics “Simultaneous hearing and visual impairments, 

the combination of which causes such severe 

communication and other developmental and 

educational needs that they cannot be accommodated 

in special education programs solely for children with 

deafness or children with blindness.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

Parent Center Hub

To find resources and services in your 

state

https://www.parentcenterhub.org/deafblindnes

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 81
Definitions and Resources

The American Association of the 

Deaf-Blind

“... national consumer organizati

of, by, and for deaf-blind Americans 

and their supporters. The site lists

Deaf-Blind Camps, Support Service 

Providers (SSPs), Technology, 

FAQs and Factsheets, emergency 

preparation and National Conferences.

http://www.aadb.org/index.h

Deafness

Characteristics “means a hearing impairment so severe that a child is 

impaired in processing linguistic information through 

hearing, with or without amplification, that adversely 

affects a child’s educational performance.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites.e

.gov/idea/regs/b/a/300

For resources, see Hard of Hearing below

Developmental Delay

Characteristics “for children from birth to age three (under IDEA Part 

C) and children from ages three through nine (under 

IDEA Part B), the term developmental delay, as defined 

by each state, means a delay in one or more of the 

following areas: physical development, cognitive 

development, communication, social or emotional 

development, or adaptive [behavioral] development.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites.e

.gov/idea/regs/b/a/300

Parent Center Hub—Information on:

■ Children’s stages of development

■ Talking with your doctor

■ Developmental evaluations

■ Early intervention services

■ IDEA

https://www.parentcenterhub.org/d

Center for Disease Control and 

Prevention (CDC)

Describes children’s developmental 

milestones from two months to five 

years

https://www.cdc.gov/ncbddd/actearly/freematerials.h

82 National Council on Disability/National Indian Council on Aging
Definitions and Resources

Down Syndrome info from the CDC

Fetal Alcohol Syndrome info from the 

CDC

Fragile X Syndrome info from the CDC

https://www.cdc.gov/ncbddd/birthdefect

downsyndrome.htm

https://www.cdc.gov/ncbddd/fasd/materials.h

https://www.cdc.gov/ncbddd/fxs/freematerials.h

Emotional Disturbance

Characteristics “means a condition exhibiting one or more of the 

following characteristics over a long period of time 

and to a marked degree that adversely affects a child’s 

educational performance:

1.  An inability to learn that cannot be explained b

intellectual, sensory, or health factors

2.  An inability to build or maintain satisfactor

interpersonal relationships with peers and teachers

3.  Inappropriate types of behavior or feelings unde

normal circumstances

4.  A general pervasive mood of unhappiness o

depression

5.  A tendency to develop physical symptoms or fear

associated with personal or school problems

The term includes schizophrenia. The term does

not apply to children who are socially maladjusted, 

unless it is determined that they have an emotional 

disturbance.” “Sec. 300.8 Child with a Disabilit

Individuals with Disabilities Education Act, 25 May 

2018, https://sites.ed.gov/idea/regs/b/a/30

Parent Center Hub

Learn about mental health 

characteristics in children, specific 

conditions, and available resources

https://www.parentcenterhub.org/emotion

disturbance/

Centers for Disease Control and 

Prevention

Information about how to create 

positive childhood experiences

https://www.cdc.gov/injury/features/preventchild-abus

Anxiety and Depression Association of 

America

https://adaa.org

National Institute on Mental Health

Information on specific mental 

disorders

Phone: 866.615.64

TTY: 1.866.415.8

https://www.nimh.nih.gov/health/publicatio

children-and-mental-health

National Alliance of Mental Illness Phone: 800.950.62

https://www.nami.org/Ho

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 83
Definitions and Resources

Substance Abuse & Mental Health 

Services Administration (SAMHSA)

1-800-662-HELP (4357)

http://www.samhsa.go

Treatment locator:

https://www.samhsa.gov/find-treatme

Center on Positive Behavioral 

Interventions and Supports

www.pbis.o

Conduct Disorders http://www.conductdisorders.co

Encyclopedia of Mental Disorders http://www.minddisorders.com/index.h

National Eating Disorders Association 1.800.931.2

www.nationaleatingdisorders.o

Something Fishy

About eating disorders

http://www.something-fishy.o

Hard of Hearing

Characteristics “means an impairment in hearing, whether 

permanent or fluctuating, that adversely affects a 

child’s educational performance in hearing schools but 

is not included under the definition of deafness.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

The Centers for Disease Control and 

Prevention

Provides information on types of 

hearing loss, screening and diagnosis, 

treatments, and free materials for 

families

https://www.cdc.gov/ncbddd/hearingloss/index.h

Parent’s Guide to Hearing Loss: https://www.cdc.go

ncbddd/hearingloss/parentsguide/index.htm

Parent Center Hub

Information on types of hearing loss, 

causes, educational implications and 

resources

https://www.parentcenterhub.org/hearinglos

American Society for Deaf Children 1.800.942.2

https://deafchildren.org

Beginnings

A nonprofit for parents of children who 

are Deaf or Hard of Hearing

https://ncbegin.org

Hands and Voices

A community of parents of ASL 

signers, cued speech users, parents 

of kids with cochlear implants, 

and people connected through the 

community of Deafness

https://handsandvoices.org

84 National Council on Disability/National Indian Council on Aging
Definitions and Resources

Hearing Loss Association of America https://www.hearingloss.or

Laurent Clerc National Deaf Education 

Center

A one-stop center for Deaf resources

202.651.50

https://clerccenter.gallaudet.edu/national-resource

info/

Medline Plus

A program of the U.S. Library o

Medicine

https://medlineplus.gov/hearingdisordersanddeafnes

.htm

National Association of the Deaf https://www.nad.o

Intellectual Disability

Characteristics “means significantly subaverage general intellectual 

functioning, existing concurrently [at the same time] 

with deficits in adaptive behavior and manifested 

during the developmental period, that adversely 

affects a child’s educational performance.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

Centers Disease Control and 

Prevention

https://www.cdc.gov/ncbdd

developmentaldisabilities/facts-about-intellectualdisability.htm

Parent Center Hub

Provides information about the 

signs, causes, and diagnoses of an 

intellectual disability, as well as help 

for babies, toddlers, and school-aged 

children. They also provide links to

several organizations

https://www.parentcenterhub.org/intellectua

The Arc of the United States Phone: 800-433-5255

info@thearc.or

www.thearc.o

Find a local chapter near you: http://www.thearc.or

page.aspx?pid=243

American Association on Intellectual 

and Developmental Disabilities

Provides an authoritative manual on 

intellectual disability, including best 

practice guidelines and supports

Phone: 800-424-3688

http://www.aaidd.or

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 85
Definitions and Resources

Multiple Disabilities

Characteristics “means concomitant [simultaneous] impairments 

(such as intellectual disability–blindness, intellectual 

disability–orthopedic impairment, etc.), the

combination of which causes such severe educational 

needs that they cannot be accommodated in a special 

education program solely for one of the impairments

The term does not include Deaf-Blindness.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites.e

.gov/idea/regs/b/a/300

Parent Center Hub

Provides information about how 

multiple disabilities vary with each 

individual, causes, evaluation 

processes and resources

https://www.parentcenterhub.org/multipl

TASH

An organization that advocates for 

inclusion for people with significant 

disabilities and support needs

http://tash.org

The National Lekotek Center Provides 

information about toys and play 

activities for children with special needs

http://www.lekotek.or

March of Dimes

Supports moms and babies during 

pregnancy and afterward with tools, 

technology, and information

http://www.marchofdimes.co

Family Connect

Provides information about family life 

when a child has multiple disabilities

https://familyconnect.org/multiple-disabilities

family-and-social-life/family-life/

Perkins Scout and the School for the 

Blind e-learning

Provides information for parents and 

educators regarding students with 

blindness and other disabilities

https://www.perkinselearning.org/scout/topic

multiple-disabilities

Orthopedic Impairment

Characteristics “means a severe orthopedic impairment that 

adversely affects a child’s educational performance

The term includes impairments caused by a congenital 

anomaly, impairments caused by disease (e.g.

poliomyelitis, bone tuberculosis), and impairments 

from other causes (e.g., cerebral palsy, amputations

and fractures or burns that cause contractures).

86 National Council on Disability/National Indian Council on Aging
Definitions and Resources

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

Centers for Disease Control and 

Prevention

Provides information about cerebral 

palsy

https://www.cdc.gov/ncbddd/cp/index.h

Easter Seals

Provides high-quality services to 

people with special needs to help 

them live, learn, work, and play

https://www.easterseals.com/our-program

Parent Center Hub

Provides information about cerebral 

palsy

https://www.parentcenterhub.org/c

United Cerebral Palsy

Provides information about cerebral 

palsy, including state chapters, 

publications, and resources

https://ucp.org

800.872.58

Cerebral Palsy Foundation

Provides information on several topics, 

such as the definition of Cerebral 

Palsy, treatments, assistive devices, 

and more

Cerebral Palsy Foundation

3 Columbus Circle, 15th Floor

New York, NY 10019

Phone: 212-520-1686

info@yourcpf.or

https://yourcpf.or

Child Neurology Foundation Child Neurology Foundation

201 Chicago Avenue, Suite 200

Minneapolis, MN 55415

Phone: 612-928-6325

info@childneurologyfoundation.or

https://www.childneurologyfoundation.or

Children’s Hemiplegia and Stroke 

Association (CHASA)

CHASA

4101 West Green Oaks Suite 205, #149

Arlington, TX 76016

Phone: 817-492-4325

info437@chasa.or

https://chasa.or

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 87
Definitions and Resources

CP NOW CP NOW

P.O. Box 83

Greenville, SC 29604

info@cpnowfoundation.or

https://cprn.org

Pathways.org

Provides free tools to maximize 

all children’s motor, sensory, and 

communication development

Pathways

355 E. Erie Stree

Chicago, IL 60601

Phone: 800-955-CHILD (2445

friends@pathwaysawareness.or

https://pathways.org

Other Health Impairments

Characteristics

“means having limited strength, vitality, or alertness, 

including a heightened alertness to environmental 

stimuli, that results in limited alertness with respect to 

the educational environment, that

(a) is due to chronic or acute health problems, such 

as asthma, attention deficit disorder or attention 

deficit hyperactivity disorder, diabetes, epilepsy, 

a heart condition, hemophilia, lead poisoning, 

leukemia, nephritis, rheumatic fever, sickle cell 

anemia, and Tourette syndrome; and

(b) adversely affects a child’s educational performance.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

Parent Center Hub

Provides an overview about specific 

health impairments that qualify a 

student for special education services 

and resources

Some health impairments are:

■ Attention Deficit and Hyperactivity 

Disorder (ADHD)

■ Epilepsy

■ Lead poisoning

■ Nephritis (Lupus)

■ Tourette Syndrome

Other Health Impaired

https://www.parentcenterhub.org/oh

Attention Deficit Disorder and Attention Deficit 

Hyperactivity Disorder

https://www.parentcenterhub.org/adh

Epilepsy

https://www.parentcenterhub.org/epileps

Lead Poisoning

https://www.parentcenterhub.org/ohi-lea

Nephritis

https://www.parentcenterhub.org/ohi-nephriti

Tourette Syndrome

https://www.parentcenterhub.org/ohi-tourett

88 National Council on Disability/National Indian Council on Aging
Definitions and Resources

Attention Deficit / Hyperactivity 

Disorder

Centers for Disease Control and 

Prevention

Institute of Certified ADHD 

Professionals

Attention Deficit Disorder Association

HealthyChildren.org

A service of the American Academy 

of Pediatrics that provides numerous 

articles, information, and resources 

about ADHD

https://www.cdc.gov/ncbddd/adhd/materialsmultimedia/index.h

https://chadd.org/for-parents/overview

Find a support organization in your state:

https://chadd.org/organization-directory

301.306.70

1.800.939.1

info@add.or

https://add.org

https://healthychildren.org/English/health-issues

conditions/adhd/Pages/default.asp

Epilepsy

Epilepsy Foundation of America

Epilepsy Therapy Project

Let’s Talk About It!

Features videos of people with 

epilepsy and information for families

The Epilepsy Health Center

Webmd.com has detailed, medically

based information on epilepsy

Epilepsy Foundation e-Communities

Connect with thousands of people 

electronically for support and 

information

Parent to Parent

Allows parents affected by epilepsy to 

talk with each other and those in their 

state

www.epilepsyfoundation.or

800.332.10

https://www.epilepsy.co

https://talkaboutit.org

https://www.webmd.com/epilepsy/default.

https://epilepsyfoundation.ning.co

https://www.p2pusa.or

Lead Poisoning

National Lead Information Center 

(NLIC)

Office within the U.S. Environmenta

Protection Agency

Centers for Disease Control and 

Prevention

(800) 424-LEAD (5323)

https://www.epa.gov/le

State and local programs:

https://www.cdc.gov/nceh/lea

Information for parents and caregivers:

https://www.cdc.gov/nceh/lead/audience/parents.h

A 2015 CDC publication, “Educational Interventions for 

Children Affected by Lead”:

https://www.cdc.gov/nceh/lead/publications/Educationa

Interventions_Children_Affected_by_Lead.pd

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 89
Definitions and Resources

Nephritis

(Inflammation of the kidney due to 

infection or an autoimmune disease 

such as Lupus)

American Kidney Fund

American Society of Pediatric 

Nephrology

National Institute of Diabetes and 

Digestive and Kidney Diseases

National Kidney Foundation

(800) 638-8299

https://www.kidneyfund.or

https://www.aspneph.or

https://www.niddk.nih.gov/health-informati

kidney-disease?dkrd=hispt0363

(800) 622-9010

https://www.kidney.or

Tourette Syndrome

Centers for Disease Control and 

Prevention

Provides materials for children, adults, 

and health care providers

National Tourette Syndrome 

Association

National Institute of Neurological 

Disorders and Stroke

Publishes a Tourette Syndrome Fact 

Sheet

https://www.cdc.gov/ncbddd/tourette/freemateria

html

https://tourette.org

https://www.ninds.nih.gov/Disorde

Patient-Caregiver-Education/Fact-Sheets/

Tourette-Syndrome-Fact-Sheet

Specific Learning Disability

Characteristics “means a disorder in one or more of the basic 

psychological processes involved in understanding 

or in using language, spoken or written, that may 

manifest itself in the imperfect ability to listen, think, 

speak, read, write, spell, or to do mathematical 

calculations. The term includes such conditions as

perceptual disabilities, brain injury, minimal brain 

dysfunction, dyslexia, and developmental aphasia

The term does not include learning problems that 

are primarily the result of visual, hearing, or motor 

disabilities; of intellectual disability; of emotional 

disturbance; or of environmental, cultural, or 

economic disadvantage.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites.e

.gov/idea/regs/b/a/300

Parent Center Hub

Provides information on the definition 

of learning disabilities, causes, 

evaluation, and tips and resources for 

teachers and families

https://www.parentcenterhub.org/l

90 National Council on Disability/National Indian Council on Aging
Definitions and Resources

Child Mind Institute

A Complete guide to dyslexia

https://childmind.org/guide/parents-guide-to-dyslexia

International Dyslexia Association

Provides webinars, conferences, 

extensive information about dyslexia 

and resources

https://dyslexiaida.org

https://dyslexiaida.org/ida-dyslexia-handbook

American Dyslexia Association https://www.american-dyslexia-association.co

Dyslexia.htm

Dyslexia Resource

Provides a dyslexia awareness video 

series, strategies, partnerships, and 

state, national, and international 

resources

https://dyslexiaresource.org/resources

Smart Kids with Learning Disabilities

Provides information about dyscalculia

https://www.smartkidswithld.org/first-steps/whatare-learning-disabilities/dyscalculia-an-overvie

Understood.org

7 Myths about Dyscalculia

https://www.understood.org/articles/en/7-commonmyths-about-dyscalcul

Parenting Pod

Publishes, “The Complete Dyscalculia 

Guide for Parents”

https://parentingpod.com/dyscalculia

LD Online http://www.ldonline.org/paren

National Center for Learning 

Disabilities

https://www.understood.org/

Learning Disabilities Association of 

America

http://www.ldanatl.org/aboutld/parents/index.

Reading Rockets http://www.readingrockets.org/audience/paren

Speech or Language Impairment

Characteristics “means a communication disorder such as stuttering, 

impaired articulation, a language impairment, or 

a voice impairment that adversely affects a child’s 

educational performance.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

Centers for Disease Control and 

Prevention

Information about language and 

speech disorders in children

https://www.cdc.gov/ncbddd/childdevelopmen

language-disorders.htm

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 91
Definitions and Resources

Parent Center Hub

Provides definitions, characteristics, 

causes, tips and resources for parents 

and teachers

https://www.parentcenterhub.org/speechlanguag

American Speech-Language-Hearing 

Association

Phone: 1-800-638-8255

actioncenter@asha.or

https://www.asha.or

Parent Companion

Provides information on how to help a 

child with language delays

https://www.parentcompanion.org/article/resourcesto-help-a-child-with-a-language-del

Cleft Palate-Craniofacial Foundation

Provides family resources

Phone: 1-800-242-5338

https://acpa-cpf.org/acpa-family-services

family-resources/

Childhood Apraxia of Speech 

Association of North America

Provides information about apraxia of 

speech

https://www.apraxia-kids.or

National Stuttering Foundation Phone: 1-800-937-8888

info@WeStutter.or

https://westutter.org

The Stuttering Foundation Phone: 1-800-992-9392

info@stutteringhelp.or

https://www.stutteringhelp.or

Traumatic Brain Injury

Characteristics “means an acquired injury to the brain caused by an 

external physical force, resulting in total or partial 

functional disability or psychosocial impairment, 

or both, that adversely affects a child’s educational 

performance. The term applies to open or closed head

injuries resulting in impairments in one or more areas, 

such as cognition; language; memory; attention; 

reasoning; abstract thinking; judgment; problemsolving; sensory, perceptual, and motor abilities; 

psychosocial behavior; physical functions; information 

processing; and speech

The term does not apply to brain injuries that are 

congenital or degenerative, or to brain injuries 

induced by birth trauma.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

92 National Council on Disability/National Indian Council on Aging
Definitions and Resources

Parent Center Hub

Defines traumatic brain injury; 

provides resources and tips for 

educators and parents

https://www.parentcenterhub.org/tb

Pediatric Brain Foundation (formerly 

Children’s Neurobiological Solutions)

Provides financial support to families 

with children impacted by neurological 

disorders, brain cancers, and traumatic 

brain injuries. They support health care

providers and educate the public

Pediatric Brain Foundation

2144 E. Republic Road, Building B, Suite 20

Springfield, MO 65804

Phone: 417-887-4242

info@pediatricbrainfoundation.or

https://www.pediatricbrainfoundation.or

Family Doctor.org

Provides basic information on 

traumatic brain injury

https://familydoctor.org/condition

traumatic-brain-injury/

Centers for Disease Control and 

Prevention

Provides information on traumatic 

brain injury and concussion

https://www.cdc.gov/TraumaticBrainInjur

Brain Injury Association of America https://www.biausa.or

National Resource Center for 

Traumatic Brain Injury

https://tbi.vcu.ed

Brainline

Provides information about brain 

injury and PTSD

https://www.brainline.or

Family Caregiver Alliance https://www.caregiver.or

Visual Impairment, Including Blindness

Characteristics “means an impairment in vision that, even with 

correction, adversely affects a child’s educational 

performance. The term includes both partial sight and

blindness.

“Sec. 300.8 Child with a Disability.” Individuals wi

Disabilities Education Act, 25 May 2018, https://sites

ed.gov/idea/regs/b/a/300

Parent Center Hub

Provides information on types of 

visual impairments, tips for parents 

and teachers, and resources

https://www.parentcenterhub.org/visualimpairmen

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 93
Definitions and Resources

American Council of the Blind

Provides comprehensive information 

for blind people and their community

https://www.acb.or

Phone: 800-424-8666

For parents of a blind child:

https://www.acb.org/are-you-parents-blind-chi

American Foundation for the Blind https://www.afb.or

American Printing House for the Blind Educational resources:

https://www.aph.org/educational-resource

Family Connect

Provides information for after 

diagnosis, age, education, multiple 

disabilities, and assistive technology

https://familyconnect.org/parentsitehome.a

Foundation Fighting Blindness Phone: 800-683-5555

TTY: 800-683-5551 (TTY)

https://www.fightingblindness.or

Find your local chapter:

https://www.fightingblindness.or

find-your-local-chapter

Lighthouse Guild

Provides integrated vision and health 

care services and assistive technology

Phone: 800-284-4422

https://lighthouseguild.org

National Braille Association

Provides education to those who 

prepare braille to people with a visual 

impairment

https://www.nationalbraille.or

National Braille Press

Empowers the blind and visually 

impaired with programs, materials, 

and technology to support braille 

literacy and learning through touch

https://www.nbp.or

Phone: 888-965-8965

The National Federation of the Blind

Provides information about aids and 

appliances, Braille, closed circuit TVs, 

guide dog schools, low vision, and 

technology

https://nfb.org

94 National Council on Disability/National Indian Council on Aging
Definitions and Resources

Organizations That Provide Accessible Print Materials for the Visually Impaired

National Library Service for the Blind 

and Physically Handicapped, Library of 

Congress

Administers a free national library 

program that provides braille and 

recorded materials to people who 

cannot see or handle regular print 

materials

https://www.loc.gov/nl

Bookshare

For people with print disabilities, 

including visual impairments or 

blindness. Offers free membership to

qualified U.S. students and school

and has more than 539,823 titles 

available digitally

https://www.bookshare.org/cm

Learning Ally

For people who cannot read standard 

print. Offers more than 80,000 digitally

recorded textbooks and literature titles 

for download. Formerly “Recording for

the Blind and Dyslexic.

Phone: 800-221-4792

https://learningally.org

The National Center on Accessible 

Educational Materials at CAST

Provides an interactive tool that 

facilitates the process of decisionmaking around accessible instructional 

materials for an individual student

https://aem.cast.org/acquire/decision-makingaccessible-formats#.WOPpYzvy

Parent Resource Centers

Related to Individuals with Disabilities Education Act (IDEA)

Parent Resource and Information Centers

1. Serve parents of children with all types of disabilities (birth to 26 year

2. At least one Parent Information Center per sta

3. Provide resources about ID

4. Required to explain dispute resolution procedures, particularly the mediati

Parent Training and Information Centers listed below by state

(Center for Parent Information and Resources. https://www.parentcenterhub.org/)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 95
State Name Address Phone #

AK Stone Soup Group 307 E. Northern Lights Blvd., St

100

Anchorage, AK 99503

877-786-7327

AL Alabama Parent Education 

Center

10520 U.S. Highway 2

Wetumpka, AL 36092

866-532-7660

AR The Center for Exceptional 

Families

102 Stone Street, Suite A

Jonesboro, AR 72401

888-360-9654

AZ Raising Special Kids 5025 E. Washington St., Ste 2

Phoenix, AZ 85034

800-237-3007

(in AZ only)

602-242-4366

CA Support for Families of 

Children with Disabilities

1663 Mission Street, Ste. 70

San Francisco, CA 94110

415-282-7494

CA 

Region 1

Team of Advocates for 

Special Kids

100 W. Cerritos Avenu

Anaheim, CA 92805

866-828-8275

CA 

Region 2

Team of Advocates for 

Special Kids

100 W. Cerritos Avenu

Anaheim, CA 92806 866-828-8276

CA 

Region 3

Exceptional Parents 

Unlimited

4440 N. 1st Stree

Fresno, CA 93726 888-774-8981

CA 

Region 4

Parents Helping Parents 

Santa Clara

1400 Parkmoor, Suite 100

San Jose, CA 95126 855-727-5775

CA 

Region 5

Warmline Family

Resource Center

2791 24th Street

Sacramento, CA 95818 844-455-9517

CO PEAK Parent Center 917 E. Moreno Ave, Suite 14

Colorado Springs, CO 80903 719-531-9400

CT Connecticut Parent Advocacy 

Center

338 Main Street

Niantic, CT 06357

800-445-2722

(in CT)

DC Advocates for Justice and

Education

1200 G Street, NW, Suite 725

Washington, DC 20005 888-327-8060

DE Parent Information Center of 

Delaware

404 Larch Circle

Wilmington, DE 19804

888-547-4412

(DE only)

FL Parents of the Panhandle 

Information Network

2196 Main St. Suite 

Dunedin, FL 34698

800-825-5736

(in FL)

GA Parent to Parent of Georgia, 

Inc

3070 Presidential Parkway, 

Suite 130

Atlanta, GA 30340

800-229-2038

96 National Council on Disability/National Indian Council on Aging
State Name Address Phone #

HI Leadership in Disabilities & 

Achievement of Hawai’i

245 N. Kukui St., Ste 2

Honolulu, HI 96817

800-533-9684

(in HI)

IA Access For Special Kids 

Resource

Center

5665 Greendale Rd. Suite 

Johnston, IA 50131

800-450-8667

ID Idaho Parents Unlimited, Inc. 4619 Emerald St., Ste

Boise, ID 83706

800-242-4785

(in ID only)

IL 

Region 1

Family Resource Center on 

Disabilities

20 E. Jackson Boulevard, Room

300

Chicago, IL 60604

800-952-4199

(in IL)

IL 

Region 2

Family Matters 1901 S. 4th Street, Suite 20

Effingham, IL 62401

866-436-7842

IN IN*SOURCE 1703 S. Ironwood Driv

South Bend, IN 46613

800-332-4433

(in IN)

KS Families Together, Inc. 5611 SW Barrington Court

South, Suite 120

Topeka, KS 66614

800-264-6343

KY Kentucky Special Parent 

Involvement

Network

10301-B Deering Road

Louisville, KY 40272

800-525-7746

LA Louisiana Parent Training 

and

Information Center

201 Evans Road, Building 1, 

Suite 100

Harahan, LA 70123

800-766-7736

MA Federation for Children with 

Special

Needs

The Schrafft Center

529 Main Street, Ste 1M3

Boston, MA 02129

800-331-0688

(in MA only)

MD Parents’ Place of Maryland, 

Inc

802 Cromwell Park Drive, 

Suite Q

Glen Burnie, MD 21061

800-394-5694

ME Maine Parent Federation P.O. Box 20

Augusta, ME 04338-2067

800-870-7746 (in 

ME)

MI Michigan Alliance for 

Families

1325 S. Washington Avenu

Lansing, MI 48910

800-552-4821

(Statewide)

MN PACER Center, Inc. 8161 Normandale Boulevar

Bloomington, MN 55437-1044

888-248-0822

(National)

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 97
State Name Address Phone #

MO Missouri Parents Act 7421 Mexico Rd, Suite 200

St. Peters, MO 6337

800-743-7634 (V/

TTY)

MS MS Parent Training and 

Information

Center

2 Old River Place, Suite M

Jackson, MS 39202

800-721-7255

MT Montana PTI * Guided by South Dakota 

Parent Connection

http://www.sdparent.or

877-870-1190

NC ECAC, Inc

(Exceptional Children’s 

Assistance Center)

907 Barra Row, Suites 102/103

Davidson, NC 28036

800-962-6817

ND Pathfinder Parent Center 1015 S Broadway, Suite 42

Minot, ND 58701

701-837-7500

NE PTI Nebraska 1941 S. 42nd St., Suite 2

Omaha, NE 68105

800-284-8520

(in NE)

NH Parent Information Center 

(PIC)

P.O. Box 24

Concord, NM 03302-2405

800-947-7005

(in NH)

NJ Statewide Parent Advocacy 

Network

35 Halsey Street, 4th Floor

Newark, NJ 07102

800-654-7726

(in NJ)

NM Parents Reaching Out 1920 B Columbia, S.

Albuquerque, NM 87106

800-524-5176

(in NM)

NV Nevada PEP 7211 W. Charleston Blv

Las Vegas, NV 89117

800-216-5188

(in NV)

NY 

Region 1

Advocates for Children of NY 151 W. 30th Street, 5th Floo

New York, NY 10001

866-427-6033

NY 

Region 1

Include NYC 116 E. 16th Street, 5th Floo

New York, NY 10003

212 677-4650

NY 

Region 1

Long Island Advocacy Center Herricks Community Ctr

999 Herricks Road

New Hyde Park, NY 11040

516 248-222

NY 

Region 1

Sinergia 2082 Lexington Ave., 4th Floo

New York, NY 10035

866-867-9665

NY 

Region 2

Starbridge 1650 South Avenue, Suite 200

Rochester, NY 14620

1-800-650-4967

(in NY)

585 546-1700

98 National Council on Disability/National Indian Council on Aging
State Name Address Phone #

OH Ohio Coalition for the 

Education of Children with

Disabilities

Chase Bank Building

165 W. Center St., Suite 3

Marion, OH 43302-3741

844-382-5452

OK Oklahoma Parents Center 223 North Broadway,

P.O. Box 5

Holdenville, OK 74848

877-553-4332

OR Family and Community 

Together

(FACT)

2475 SE Ladd Avenue, Suite 430

Portland, OR 97214

888-988-3228

PA Parent Education and 

Advocacy Leadership Center 

(PEAL)

2325 East Carson St., Ste 100

Pittsburg, PA 15203

520 N. Christopher Columbus

Blvd, Ste 602

Philadelphia, PA 19123

866-950-1040

PR APNI, Inc. P.O. Box 21

San Juan, PR 00928-1280

RI Rhode Island Parent Info 

Network (RIPIN)

1210 Pontiac Avenue

Cranston, RI 02920

800-464-3399

(in RI)

SC Family Connection of SC 1800 St. Julian Place, Suite 10

Columbia, SC 29204

(800) 578-8750

SD South Dakota Parent 

Connection

3701 W. 49th Street, Suite 10

Sioux Falls, SD 57106

800-640-4553

(in SD)

TN Support and Training for 

Exceptional Parents, Inc

(STEP)

712 Professional Plaza

Greeneville, TN 37745

800-280-7837

(English toll-free 

in TN only)

800-975-2919

(Spanish toll-free 

in TN only)

TX 1 Partners Resource Network 

(PATH)

1090 Longfellow Drive, Suite B

Beaumont, TX 77706-4819

800-866-4726

(in TX)

TX 2 Partners Resource Network 

(TEAM)

4501 Cartwright Rd, Suite 605

Missouri City, TX 77459

877-832-8945

(in TX)

TX 3 Partners Resource Network 

(PEN)

1001 Main Street, Suite 701

Lubbock TX 79401

877-762-1435

(in TX)

UT Utah Parent Center 230 West 200 South, Suite 1101

Salt Lake City, UT 84101

800-468-1160

(in UT)

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 99
State Name Address Phone #

VA PEATC 8003 Forbes Place, Suite 310

Springfield, VA 22151

800-869-6782

VI Virgin Islands Parent Training 

and

Information Program

Main Office

63 Cane Carlton

Frederiksted, VI 00840

340-772-1200 | 

340-772-1280

http://drcvi.org

VT Vermont Family Network 600 Blair Park Road, Suite 240

Williston, VT 05495

800-800-4005 (in 

VT)

WA PAVE 6316 S. 12th Stree

Tacoma, WA 98465-1900

800-572-7368 (V/

TTY)

WI Wisconsin FACETS PTI 600 W. Virginia Street, Suite 50

Milwaukee, WI, 53204

877-374-0511

(Milwaukee)

WV WV PTI 99 Edmiston Way, Suite 101

Buckhannon, WV 26201

800-281-1436

WY Parents Helping Parents of 

WY, Inc

2232 Dell Range Blvd, Suite 20

Cheyenne, WY, 82009

800-660-9742

(in WY)

100 National Council on Disability/National Indian Council on Aging
Chapter 5: Independent Living

“I know there’s a lot of resources out we’re not tapping into 

because we’re just not seeing them. There’s a disconnect and all of 

us can be those bridges.”

Dr. Kimberly Yellow Robe, Advocate

Independent Living

Independent Living philosophy emphasizes consumer control, the idea that people with disabilities are the best experts 

on their own needs, having crucial and 

valuable perspective to contribute and 

deserving of equal opportunity to decide 

how to live, work, and take part in their 

communities, particularly in reference to 

services that powerfully affect their day-today lives and access to independence.

National Council on Independent Living

T

raditionally, independent living was viewed 

from a rehabilitation model that viewed 

physical impairments as functional limitations. 

An Independent Living model focuses on how 

people with disabilities can navigate community 

barriers to live an active life of their own choosing.

Continuum of Care

People receive care for a variety of reasons, 

from short-term medical treatment for an 

illness to long-term custodial care for a chronic 

condition. The word continuum suggests a 

straight line, but the types of care a person 

may access encircles the person.

A continuum of care includes:

■ Medical & non-medical services

■ A variety of settings

■ Assistance with ADLs/IDLs

■ A person’s choices

■ Any person at any age

■ Disability & chronic needs

■ Care coordination

■ A range of services

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 101
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, 

stakeholder

Objectives Fix deficits to overcome 

limitations

Systems change to reduce structured 

inequality; disability awareness minimizes 

restrictive perceptions

Control is vested in 

professionals

Control is vested in a person(s) with 

disabilities

Organizational 

Structure And 

Response

Knowledge base is advanced 

degrees

Professional counseling

Professional therapy

Knowledge base is experiential, focusing 

on achieving independence

Peer support and counseling

Independent living skills training

Community And 

Self-Perceptions 

Of A 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, worship, civic 

activities, etc

■ Freedom to progress without a goal or to be 

fixed

■ Services that are not covered by Medicare

How Is Care Funded?

Several federal agencies and programs are 

integrated to provide services and supports 

to older adults and people of all ages with 

disabilities.

The Administration of Community 

Living (ACL)

A federal agency that supports the needs of the 

aging and disability populations and improves 

access to health care and long-term services. 

ACL has the responsibility in enacting several 

federal laws that protect and fund programs for 

older adults and people with disabilities. The 

laws include:

■ Older Americans Act

■ Developmental Disabilities Assistance and 

Bill of Rights Act

■ Rehabilitation Act of 1973

ACL funds programs that support American 

Indians, Alaska Natives and Native Americans 

in the areas of nutrition, supportive services for 

older adults, and caregiver services.

102 National Council on Disability/National Indian Council on Aging
Leading Age

Nutrition and supportive services grants include:

■ Congregate and home-delivered meals

■ Information and referral

■ Transportation

■ Personal care

■ Chores

■ Health promotion and disease prevention, 

and other supportive services

Caregiver services grants include:

■ Assisting families in caring for older relatives 

with chronic illness or disability

■ Grandparents caring for grandchildren

■ Other necessary services so the people can 

live independently in their communities

(Administration for Community Living, 

Services for Native Americans)

The June 2020 Strategic Framework for Action 

from the ACL has two goals:

1. Growth of Community Integrated Health 

Networks (CIHNs).

a. The network defines roles and 

responsibilities of network members and 

who is the lead network entity.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 103
2. Provide information on how to leverage 

federal and state funds to provide personcentered services and supports in the 

community.

a. Blend and braid funding streams from 

federal, state, and local levels to broaden 

the impact and reach of services.

i. When federal funds from various 

sources are braided, they deliver 

seamless services to individuals, but 

the funds need to be tracked and 

reported separately.

(Administration for Community Living, 

Strategic Framework for Action)

Some Federal Sources of Funds That 

May be Braided

1. Medicare: A federal health insurance 

program for individuals 65 and older and 

specific qualifying groups. Pays for medical 

care and non-medical care to people who 

are unable to perform basic activities of daily 

living (ADLs). (Medicare does not pay for 

long-term care.)

2. Administration on Aging: A federal 

agency that carries out the provisions 

of the Older Americans Act of 1965. It 

distributes funds to states for supportive 

services and programs for older individuals 

to live independently in their homes and 

communities.

3. Medicaid: A federal health insurance 

program for people with low incomes and 

disabilities. Funds are distributed to states. 

Provides long-term services and support for 

qualifying individuals. Long-term care can 

be provided at home, in the community, or 

in various types of facilities such as nursing 

homes or assisted living facilities.

4. Federal Transit Administration: Provides 

grants to expand access to transportation 

for people with disabilities, older adults, and 

individuals with low income. Section 5311 

provides Rural/Tribal Program grants.

a. Health and Human Services grant funds 

spent on transportation can be used for 

the match requirement for FTA grants.

b. Funds can be used for purchasing 

vehicles, hiring mobility managers, and 

implementing travel training programs.

5. Several nutrition and food security funds are 

available.

a. Administration for Community Living

i. Home-Delivered Nutrition Program

ii. Congregate Nutrition Program

b. USDA Food and Nutrition Service

i. Supplemental Nutrition Assistance 

Program (SNAP)

ii. Commodity Supplemental Food 

Program (CSFP)

iii. Child and Adult Care Food Program 

(CACFP)

iv. Senior Farmers Market Nutrition 

Program (SFMNP)

6. Housing and Urban Development, Rural 

Housing Service

7. Low Income Housing Tax Credit

a. Centers for Independent Living (see 

below) help many older adults and 

people with disabilities secure housing 

through Section 8 vouchers

104 National Council on Disability/National Indian Council on Aging
b. Support services can be integrated in 

supportive housing, such as:

i. Service coordination

ii. Wellness nurses

iii. Employment services

iv. Prevention and wellness programs

v. Medical and Behavioral health 

referrals or services

vi. Assistive technology acquisition and 

training

Centers for Independent Living (CILs)

Centers for Independent Living are designed 

and operated by people with disabilities to 

provide independent living services for people 

with disabilities of all types. CIL programs 

provide tools, resources, and supports for 

integrating people with disabilities fully into their 

communities to promote equal opportunities, 

self-determination, and respect.

To understand how CILs make community 

living possible, see the graphic below from the 

Administration for Community Living.

(Centers for Independent Living)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 105
The Rehabilitation Act, Title VII, Chapter 1 

funds independent living programs, and every 

three years states must submit a “State 

Independent Plan for Independent Living.” The 

implementation of the plan is monitored by a 

statewide independent living council.

Centers for Independent Living (CILs) 

are consumer-controlled, community-based, 

cross-disability, nonresidential private nonprofit 

agencies that are designed and operated 

within a local community by people with 

disabilities and provide an array of independent 

living services (Centers for Independent 

Living).

354 discretionary population-based formula 

grants fund Centers for Independent Living. 

At a minimum, the centers must provide core 

services:

■ Information and referral

■ Independent Living Skills training

■ Peer counseling

■ Individual and Systems advocacy

(Oberlink, Mia)

106 National Council on Disability/National Indian Council on Aging
■ Services to facilitate transition from nursing 

homes/other institutions to the community

● Assist those at risk of entering institutions

● Facilitate transition of youth to 

postsecondary life

To find Centers for Independent Living by 

State and your State Plan for Independent 

Living, go to: https://acl.gov/programs/centersindependent-living/list-cils-and-spils.

The AdvantAge Initiative shows the essential 

elements of an older adult- and People-withDisability-Friendly Community.

Tribal Centers for Independent Living

ASSIST! to Independence

Located in Tuba City, AZ, the vision of ASSIST! to 

Independence is to provide appropriate services 

to enhance the quality of independent living in a 

culturally appropriate manner.

Serves individuals who reside on the Navajo 

Nation, Hopi Reservation, San Juan Southern 

Paiute Reservation, and individuals living in 

Navajo, Apache, and Coconino Counties.

Services provided so people can live 

independently:

■ Information and referral—connecting 

consumers with programs/services

■ Independent Living Skills Training—providing 

one-on-one and group training

■ Transition Services—assists consumers 

move from nursing homes to less restrictive 

living arrangements, such as a home or 

apartment

■ Assists youth transition to adulthood—

assists with transition from rehabilitation 

setting to the community

■ Peer Support—provides peer mentors who 

are consumers who have been there

■ Individual and Systems Advocacy—teach 

self-determination strategies to address 

physical and attitudinal barriers in society

Additional Independent Living Services provided:

■ Employment

■ Work skills education

■ Personal assistance

■ Socialization and recreation

■ Sports, fitness and health promotion

■ Home modifications

■ Reintegration from nursing home to the 

community

■ Accessing affordable health care

■ Obtaining accessible housing

■ Transportation

■ Traditional healing services

■ Durable medical equipment

Website: https://assistti.org/

Cherokee Nation Home Health 

Services, Inc. (CNHHS)

CNHHS is a tribally incorporated, nonprofit home 

health care agency that is Medicare and Medicaid 

certified to provide state-licensed home health care 

services for Medicare and Medicaid beneficiaries.

The services provided are:

■ Home health aides who assist with daily 

activities

■ Home-based hospice care

■ Personal care to assist with activities of daily 

living

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 107
■ Respite support

■ Skilled nursing care

■ Therapies

■ Transportation

Services to assist consumers navigate the 

health care / independent living systems:

■ Client Need Assessments and eligibility for 

services

■ Case management

■ Completing Medicaid applications

Medicaid covered services:

■ Home modification

■ Medical equipment supplies

Pueblo of Zuni’s Long Term Services 

and Supports Network

Pueblo of Zuni has a wide network of LTSS 

programs for elders. These programs work 

together to provide comprehensive, culturally 

appropriate care to elders within the community.

Network’s main programs:

■ Adult day care

■ A federally qualified home health center

■ Zuni IHS hospital’s Elder Care Program

The services provided by the Zuni LTSS 

Network:

■ Adult day care for people with dementia

■ Companionship

■ Congregate meals

■ Disease prevention and health promotion 

activities

■ Household chores

■ Home-delivered meals

■ Home health aides to assist with daily 

activities

■ Intergenerational activities

(Cherokee Nation Home Health Services)

108 National Council on Disability/National Indian Council on Aging
■ Outreach and education

■ Recreational and social activities

■ Skilled nursing care

■ Nutrition support

■ Transportation

■ Support for veterans

Funding

The Zuni Adult Day Care program receives 

financial support from:

■ Title VI Nutrition for the Elderly

■ Title V Older Worker Program

■ the state of New Mexico

Zuni Home Health receives Medicaid and 

Medicare reimbursement.

The IHS hospital’s Elder Care Program is 

funded through IHS.

White Earth Long Term Care 

Consultation Services

The White Earth Band of the Ojibwe formed the 

Long Term Care Consultation (LTCC) program 

in 2005. White Earth contracts with the state 

of Minnesota and provides case management, 

eligibility assessments, and home- and 

community-based services.

Services provided are:

■ Adult day care

■ Assistive technology

■ Caregiver support

■ Employment support

■ Home-delivered meals

■ Home health aides who assist with daily 

activities

■ Household chores

■ Home modification

■ Medical equipment supplies

■ Personal support services

■ Respite care

■ Skilled nursing care

■ Specialist referrals

■ Transitional care

■ Transportation

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 109
Services to assist consumers navigate the 

health care / independent living systems:

■ Client Need Assessments and eligibility for 

services

■ Case management

■ Completing Medicaid applications

Funding

White Earth LTCC provides much of its 

services through several 1915(c) HCBS waivers 

under Medicaid. The tribe, Medicare, and 

the Department of Veterans Affairs provide 

the rest.

Resources to Support Independent Living Initiatives

Who What Website/Contact

ADAPT

(American Disabled for 

Attendance Programs 

Today)

A disability rights advocacy group 

that trains and organizes local 

groups to advocate for people with 

disabilities to receive services in 

their homes and not be forced to 

live in institutional settings

201 S. Cheroke

Denver, CO 80223

303-733-9324

https://adapt.org

Email: adapt@adapt.or

Administration for 

Community Living, 

Services for Native 

Americans

ACL funds a broad range of services 

for Native Americans:

■ Congregate and home-delivered 

meals

■ Information and referral

■ Transportation

■ Personal care

■ Chores

■ Health promotion and disease 

prevention

■ Other services

https://acl.gov/programs

services-native-americansoaa-title-vi

American Association of 

People with Disabilities

(AAPD)

AAPD is the nation’s largest 

disability rights organization

Members include people with 

disabilities, family, friends, and 

supporters working to promote 

equal opportunity, economic 

power, independent living, and 

political participation of people with 

disabilities

The American Association of 

People with Disabilities (AAPD)

2013 H Street, NW, 5th Floor

Washington, DC 20006

800-840-8844 (V/TTY)

202-457-0046 (V/TTY)

866-536-4461 (Fax)

https://www.aapd.co

ANCOR Foundation Builds and honors exceptional leaders 

who cultivate inclusive communities 

for people with intellectual and 

developmental disabilities

http://www.ancorfoundatio

.org

110 National Council on Disability/National Indian Council on Aging
Who What Website/Contact

ASSIST! to 

Independence

Tribal Center for Independent Living 

located in Tuba City, AZ

https://assistti.org

Bazelon Center for 

Mental Health Law

The Bazelon Center advocates for 

the civil rights, full inclusion, and 

equality of adults and children with 

mental disabilities

Programs focus on:

■ Education

■ Mental Health Systems

■ Criminal Justice

■ Employment Advocacy

■ Voting Rights

http://www.bazelon.or

“In the Driver’s Seat: A Guide 

to Self-Directed Mental Health 

Care”

https://secureservercdn

net/198.71.233.111/d25

myftpupload.com/wp-content

uploads/2017/01/Drivers-seat

pdf

Benefits CheckUp Find out what benefits may be 

available in your area. There are

over 2,500 benefit programs 

available nationwide

https://www.benefitschecku

.org

The Center for 

Self- Determination

The Center for Self-Determination 

has a national network of trainers, 

presenters, and consultants

Some of the Center’s specialties 

include individual budgeting, 

housing, independent support 

coordination relationship 

building, de-institutionalism, 

systems transformation, CMS 

Rule compliance, information 

technology, managed care, Medicaid 

regulations, employment, inclusive 

community participation, supported 

decision-making (alternatives to 

guardianship), PEER support, etc

http://www.self-determinatio

.com

Consortia of 

Administrators for 

Native American 

Rehabilitation

CANAR is the membership 

organization of the administrators of 

rehabilitation agencies serving Native 

Americans and Alaskan Natives

https://www.csavr.org/can

Diverse Elders Coalition Diverse Elders Coalition advocates 

for policies and programs that 

improve aging in AI/AN and LGBTQ 

communities

https://diverseelders.org

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 111
Who What Website/Contact

Eldercare Locator A public service of the U.

Administration for Community 

Living/Administration on Aging to 

connect you to services for older 

adults and their families

1-800-677-1116

https://eldercare.acl.go

Public/Index.asp

Independent Living 

Research Utilization

(ILRU)

ILRU is a national center for 

information, training, research, and 

technical assistance in independent 

living

Directory of Centers for Independent 

Living and Associations in Alaska

https://www.ilru.org/about-il

Directory of Centers for 

Independent Living and 

Associations in Alaska

https://www.ilru.org/project

cil-net/cil-center-andassociation-directory-results/

AK

Inter-Tribal Council of 

Arizona

Provides important links (e.g.

Title III reporting forms), manuals, 

handbooks, and resources on Aging 

and Adult Services

https://itcaonline

com/programs/aging/

elder-services-news/

Kids Included Together 

(KIT)

KIT provides training to break down 

barriers to inclusion so children 

with disabilities, complex needs, or 

challenging behaviors have the right 

to meaningfully participate in their 

communities

Kids Included Together

2013 H Street NW, Ste 620

Washington, DC 20006

Phone: 858-225-5680

Fax: 619-758-0949

https://www.kit.o

Long-Term Care.gov Long-term care is a range of services 

and support to meet personal care 

needs. Has a services locato

https://acl.gov/lt

National Association 

of Councils on 

Developmental 

Disabilities

A membership association for 56 

state and territorial Councils on 

Developmental Disabilities (DD 

Councils). DD Councils receive

federal funding to support programs 

that promote self-determination, 

integration, and inclusion for 

all people in the U.S. wit

developmental disabilities

https://www.nacdd.or

To find your state’s DD 

Council:

https://www.nacdd.or

councils/

National Resource 

Center for Alaska Native 

Elders

One of three resource centers for AI/

AN and Hawaiian Natives funded by 

the Administration on Aging

Activity Manual to Honor Alaska 

Native Cultures and Traditions in 

Care Facilities

Alaska Traditional Kitchen with Chef 

Flora Deacon

Articles, posters, and reports

https://www.uaa.alaska.e

academics/college-of-health/

nrc-alaska-native-elders/

Resources:

https://www.uaa.alaska.e

academics/college-of-health/

nrc-alaska-native-elders/

resources/index.cshtm

112 National Council on Disability/National Indian Council on Aging
Who What Website/Contact

National Disability 

Rights Network

The NDRN works in Washington, 

DC, on behalf of the Protection 

and Advocacy Systems and Client 

Assistance Programs. It is the

largest provider of legal advocacy 

services for people with disabilities

National Disability Rights 

Network

900 Second Street NE, Ste 211

Washington, DC 20002

Phone: 202-408-9514

TTY: 202-408-9521

Fax: 202-408-9520

https://www.ndrn.o

National Resource 

Center on Native 

American Aging

One of three resource centers for AI/

AN and Hawaiian Natives funded by 

the Administration on Aging

NRCNAA provides education, 

training, and technical assistance 

in developing community-based 

solutions to improve the quality 

of life and delivery of related 

support services to the Native aging 

population

Resources:

* Needs Assessment/Survey 

of Elders (Data can be used 

for planning and grant 

applications)

https://www.nrcnaa.or

needs-assessment

* Native Urban Elder Needs 

Assessment Survey

https://www.nrcnaa.or

urban-needs-assessment

* WELL-Balanced

(Wise Elders Living Longer)

A group exercise and social 

program

https://www.nrcnaa.or

well-balanced

* Native Elder Caregiver 

Curriculum (three-day 

workshop to help caregivers 

function more effectively)

https://www.nrcnaa.org/nativeelder-caregiver-curricul

* Training

https://www.nrcnaa.org/traini

National Indian Council 

on Aging

Resources about Long Term Services 

and Supports. Includes

■ Advocacy Toolkit

■ Aging in Place

■ Caregiver’s Corner

■ Partners and Community 

Development

■ Nutrition

■ Paying for Your Care

■ Planning for LTSS

■ Veterans Administration LTSS

https://nicoaltsscompass.org

community-resources/

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 113
Who What Website/Contact

National Indian Council 

on Aging

For Tribal Leaders:

Thinking About Building a Long 

Term Care Facility?

* 15-page guide

https://nicoaltsscompass.org

wp-content/uploads/2020/12/

Nursing-Home-Creation.pd

Native American 

Advocacy Program

A program to support Lakotas 

Transitioning to Culturally Grounded 

Lifestyles

https://mbullbear.wixsite.co

lakotayouth/independent-living

Native American 

Disability Law Center

The Native American Disability 

Law Center is a private nonprofit 

organization that advocates for the 

legal rights of Native Americans 

with disabilities in the four corners 

area (NM, AZ, UT, CO). Through

advocacy and education, we 

empower Native people with 

disabilities to lead independent lives 

in their own communities

Native American Disability 

Law Center

905 W. Apache Stree

Farmington, NM 87401

Phone: 505-566-5880

800-862-7271

Fax: 505-566-5880

https://www.nativedisabilityla

.or

Email: info@disabilitylawcenter

.or

Rehabilitation Services 

Administration

The American Indian Rehabilitation 

Services program assists tribal 

governments to develop or increase 

capacity to provide culturally 

relevant Vocational Rehabilitation 

services

https://rsa.ed.gov/program/aiv

Program Contact:

Sonja Turner

400 Maryland Avenue, SW

PCP, Room 5049

Washington, DC 20202

Phone: 202-245-7557

Email: sonja.turner@ed.g

August Martin

400 Maryland Avenue, SW

PCP, Room 5049

Washington, DC 20202

Phone: 202-245-7410

Email: august.martin@ed.g

Self Advocates 

Becoming Empowered

(SABE)

The mission of SABE is to ensure 

that people with disabilities are 

treated as equals and that they are 

given the same decisions, choices, 

rights, responsibilities, and chances 

to speak up to empower themselves; 

opportunities to make new friends, 

and to learn from their mistakes

https://www.sabeusa.or

114 National Council on Disability/National Indian Council on Aging
Who What Website/Contact

Statewide Independent 

Living Councils

(SILC)

SILCs support the development, 

implementation, and monitoring 

of Independent Living services and 

Centers for Independent Living 

programs in a state through a State 

Plan for Independent Living (SPIL)

https://www.ilru.org/project

silc-net/silc-directory

USAging

(Formerly: National 

Association of Area 

Agencies on Aging)

U.S. Aging supports the nationa

network of Area Agencies on Aging 

and advocates for the Title VI Native 

American Aging Programs that 

help older adults and people with 

disabilities

https://www.usaging.or

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 115
116 National Council on Disability National Council on Disability/National Indian Council on Aging
Chapter 6: Vocational Rehabilitation and Employment

“The state (NM DVR) built good relationships with tribal VR staff. The staff has to be willing 

(to work together).”

Ella Yazzie-King, Advocate

American Indian and Alaska Native 

Workforce Participation

T

he employment data on American Indian 

and Alaska Natives participation in the 

workforce has been grim for decades. 

Data from 2016–18 Current Population Survey 

collected by the U.S. Bureau of Labor Statistics 

found that in comparison to the overall U.S. 

population, AI/ANs had:

■ Higher unemployment rates

■ Lower labor force participation rates

■ Higher unemployment rates for AI/ANs who 

lived in an AI/AN area than for AI/ANs who 

lived elsewhere

● AI/AN areas are defined as a federal or 

state American Indian reservation or offreservation trust land, tribal statistical area, 

or Alaska Native village statistical area.

■ An unemployment rate of 6.6%, 

considerably higher than the rate of 3.9% 

for the country as a whole (U.S. Bureau of 

Labor Statistics 2019)

AI/ANs in 2016–18 were more likely to have a 

disability (16%) than the overall population (12%). 

The table below further breaks down rates of 

disability by age.

In general, people with disabilities are much 

less likely to participate in the labor force than 

people without disabilities. In 2016–18, only 22.6 

percent of AI/ANs with a disability were either 

working or looking for work, about a third the rate 

of AI/ANs with no disability (67.4%) (U.S. Bureau 

of Labor Statistics 2019).

Employment Protections

Different federal laws have different criteria to 

determine if a person is deemed to have a disability.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 117
Ages of Persons with a Disability

Percentage of American Indian 

and Alaska Native with a 

Disability

Percentage of Total 

U.S. Population with a 

Disability

Total, 16 years and older 15.9% 11.

16 to 24 years 5.9% 4.

25 to 54 years 11.1% 6.

55 years and over 34.0% 22.

(U.S. Bureau of Labor Statistics 2019)

ADA Definition Of A Disability

Title I of the Americans with Disabilities Act (ADA) 

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. ADA does apply to 

organizations such as the Indian Education Service 

and the Bureau of Indian Education.

Under the ADA, an individual is generally 

deemed to have a disability if he or she suffers 

from a “physical or mental impairment that 

substantially limits one or more major life 

activities.” Working, or being employed, is 

considered a major life activity for the purpose 

of determining the existence of a disability. 

Notably, the definition of “disability” is to be 

understood broadly, including conditions that are 

episodic in nature or are in remission (Telework 

Guidance).

Rehabilitation Act

The Rehabilitation Act prohibits discrimination 

based on disability in federal employment, 

programs conducted by federal agencies, and 

by organizations that receive federal funds. In 

determining employment discrimination, the 

Rehabilitation Act uses the same standards as 

Title I of the ADA.

Employment

Titles I and II of the ADA also specifically address 

employment issues for people with disabilities. Title 

I requires employers with 15 or more employees 

to provide qualified people with disabilities an 

equal opportunity to benefit from the full range 

of employment-related opportunities available to 

others. For example, it prohibits discrimination in 

recruitment, hiring, promotions, training, pay, social 

activities, and other privileges of employment.

Title I of the ADA restricts questions that can 

be asked about an applicant’s disability before a 

job offer is made, and it requires that employers 

make reasonable accommodations for the known 

physical or mental disability of otherwise qualified 

people with disabilities, unless it results in undue 

hardship.

State and Local Governmental 

Requirements

Title II of the ADA 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 their programs, services, and 

activities (e.g., public education, employment, 

transportation, recreation, health care, social 

services, courts, voting, and town meetings).

118 National Council on Disability/National Indian Council on Aging
State and Local Governmental 

Buildings

State and local governments are required to 

follow specific architectural standards in new 

construction and alteration of existing buildings. 

Governmental programs must be provided in 

buildings that are accessible and communicate 

effectively with people who have hearing, vision, 

or speech disabilities unless such actions would 

result in undue financial and administrative 

burdens.

State and local governments 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.

Reasonable Accommodations

The purpose of providing reasonable 

accommodations is to enable employers 

to hire or retain qualified job candidates 

regardless of their disability by eliminating 

barriers in the workplace (Disability Access 

Office 2011).

Some types of accommodations include 

assistive devices, reassignment, modified work 

schedules, job modifications, relocation, or a 

change in the physical plant.

Examples of assistive devices often used in 

the workplace include the teletypewriter (TTY), 

telephone amplifier, or video relay, often used by 

Deaf and Hard of Hearing people; wooden blocks 

to elevate desks and tables for wheelchair users; 

and large-type computer terminals and Braille 

printers to assist people with vision impairments 

(Disability Access Office 2011).

How to File Complaints for Disability 

Discrimination

The Rehabilitation Act prohibits discrimination 

based on disability and uses the same standards 

as Title I of the ADA.

Section 121 of the Rehabilitation Act 

authorizes the Rehabilitation Services 

Administration (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, 

which does not equate to a waiver of sovereign 

immunity.

Sovereign immunity would prevent private 

parties from seeking redress in federal or state 

court. However, sovereign immunity may not 

protect tribes from the federal government 

enforcing disability legislation. For non-tribal 

businesses and services, federal law still 

applies.

Filing a Job Discrimination 

Complaint

A job discrimination complaint may be filed 

by mail or in person at the nearest U.S. Equal 

Employment Opportunity Commission (EEOC) 

office.

To find the closest EEOC office, call or look 

online at the EEOC field office map:

Phone: 800-669-4000

TTY/TDD: 800-669-6820

Field Office List and Jurisdiction Map: https://

www.eeoc.gov/field-office

If you need assistance filing the complaint, tell 

the EEOC office so arrangements can be made. 

A few examples of arrangements are a sign 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 119
Information Needed to File a Discrimination Complaint

■ Name, address, and telephone number of the person who is being treated unfairly

■ Name, address, and telephone number of the employer you are filing the complaint against

■ A brief description of the event or events that you believe are unfair or harassing 

■ The dates these events occurred

language interpreter, foreign language interpreter, 

or print materials in an accessible format.

If you believe you have been treated unfairly 

or harassed at work by a Federal Government 

employer, you must follow different procedures. 

For information on how the process works, you 

should see the guidelines for Federal Sector Equal 

Employment Opportunity Complaint Processing.

Federal Sector Equal Employment 

Opportunity Complaint Processing 

Guidelines

If you believe you have been treated unfairly 

or harassed at work by a Federal Government 

employer, there are different procedures. 

Follow the guidelines for Federal Sector Equal 

Employment Opportunity Complaint Processing.

https://www.eeoc.gov/federal-sector/overviewfederal-sector-eeo-complaint-process

A complaint alleging disability discrimination 

under Title II of the ADA can be filed against 

a state or local government or a public 

accommodation (a private business, including 

a restaurant, doctor’s office, retail store, hotel, 

etc.). A complaint can be filed online using the 

link below, by mail, or by facsimile.

To file an ADA complaint online:

https://civilrights.justice.gov/report/

ADA Complaint form: https://www.ada.gov/

CRT-ReportPDF-Sep2021.pdf

Fill out the ADA Complaint Form and send it 

by mail to:

U.S. Department of Justice

Civil Rights Division

950 Pennsylvania Ave., NW

4CON, 9th Floor

Washington, DC 20530

To file an ADA complaint by facsimile, fax the 

completed ADA complaint form to:

(202) 307-1197

To talk with an ADA specialist, call

Voice: 800-514-0301

TTY: 800-514-1383

Voice: 800-514-0301

TTY: 800-514-0383

Workforce Innovation and 

Opportunity Act of 2014

On July 22, 2014, President Obama signed into 

law the Workforce Innovation and Opportunity 

Act (WIOA) which superseded the Workforce 

Investment Act of 1998 (WIA).

120 National Council on Disability/National Indian Council on Aging
The purpose of WIOA is to provide a 

workforce system that is universally accessible, 

customer centered, and gives emphasis to jobdriven training. WIOA is designed to help job 

seekers access employment, education, training, 

and support services in order to succeed in the 

labor market. WIOA matches employers with the 

skilled workers needed to compete in the global 

economy (U.S. Department of Labor Laws and 

Regulations).

The Rehabilitation Act of 1973 was 

incorporated into WIOA as Title IV and authorizes 

the formula grant programs of Vocational 

Rehabilitation, supported employment, and 

client assistance. The Act includes a focus on 

rights, advocacy, and protections for people with 

disabilities (U.S. Department of Labor Laws and 

Regulations).

Division of Indian and Native 

American Programs and WIOA

The Division of Indian and Native American 

Programs (DINAP) Workforce Innovation and 

Opportunity Act (WIOA) Section 166 grantees 

and the Department of Labor share a vision 

of providing quality employment and training 

services to tribes, tribal organizations, Alaska 

Native entities, Indian controlled organizations, 

and Native Hawaiian organizations serving 

unemployed and low-income Native Americans, 

Alaska Natives and Native Hawaiians (U.S. 

Department of Labor, Indian and Native 

American Programs). In 2021, there were 167 

Native American Adult and Youth programs 

funded by WIOA Section 166. In total, 

$54,945,000 was allotted for Adult Programs, 

and $13,778,655 for Youth Programs (U.S. 

Department of Labor, WIOA Section 166).

Job Centers

WIOA requires American Job Centers, also 

known as Workforce Centers and “one-stop 

career centers” to provide universal access 

to basic career services and coordination 

of individualized training services to eligible 

participants. One-stop career centers address the 

needs of employers and the workforce, including 

co-locating workforce partners at the one-stop 

career center (The LEAD Center 2016). State 

and local Department of Vocational Rehabilitation 

offices are co-located at one-stop career centers.

There are multiple provisions of WIOA, including 

a requirement that each state submit a four-year 

Unified State Plan (an action plan), establish a State 

Workforce Development Board, local workforce 

development boards, and operate one-stop career 

centers. The Workforce Development Boards are 

charged with developing strategies to support 

career pathways and workforce investment 

activities such as education, skill development, 

training, and other supportive services so eligible 

individuals can gain or retain employment.

WIOA Programs

Individuals who access services through WIOA 

receive individualized career and training-related 

services to eligible persons with significant 

barriers to employment and to assist employers 

fill their workforce needs with job-seeking 

individuals.

The LEAD Center 2016

Career Pathways and Partnerships 

in WIOA

As emphasized in the 2016 WIOA regulations, 

one-stop career centers (also called workforce 

centers) are required to collaborate with adult 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 121
WIOA Programs

Adult Program (WIOA Title I) 

Dislocated Worker Program (WIOA Title I)

Youth Program (WIOA Title I)

Adult Education and Family Literacy Act Program (WIOA Title II)

Wagner-Peyser Act Program (Wagner-Peyser Act, as amended by title III)

Vocational Rehabilitation Program (Title I of the Rehabilitation Act of 1973, as amended by Title IV)

Jobs for Veterans State Grants Program (Authorized under 38, U.S.C. 4100 et. seq.) 

Senior Community Service Employment Program (Title V of the Older Americans Act of 1965)

Temporary Assistance for Needy Families Program (TANF)

Employment and Training Programs under the Supplemental and Nutrition Assistance 

Program (SNAP)

Trade Adjustment Assistance for Workers Program

education, postsecondary education, and other 

partners to establish career pathway programs. 

Career pathway programs offer job seekers 

a clear sequence, or pathway, of education 

coursework and/or training credentials that are 

aligned with employer-validated work readiness 

standards and competencies.

WIOA training funds are eligible to 

individuals in specific industry sectors identified 

in their state’s “State Unified Plan” due to high 

demand for employees. Individuals may receive 

training funds (for example, up to $9,000 in 

NM in 2020) if the individual’s career pathway 

is aligned with the state’s sector strategy, 

the individual completes the required career 

readiness activities (i.e., have a current resume, 

conducted labor market research on the industry 

sector of interest, etc.), and enrolls in a stateapproved training program. During the career 

readiness or development process, individuals 

learn about:

■ Industry sectors

■ Careers within an industry sector

■ Wages

■ Number of job openings

■ Daily job tasks

■ Local job demand

■ Opportunities for advancement

■ Industry required credentials

■ Education and training requirements 

(Gioannosa 2018)

Individualized career services must be made 

available if determined to be appropriate for an 

individual to obtain or retain employment.

122 National Council on Disability/National Indian Council on Aging
Services at One-Stop Career Centers

■ Comprehensive and specialized assessments of the skill levels and services needed by a 

participant, which may include diagnostic testing, in-depth interviewing, and evaluation to 

identify employment barriers and appropriate employment goals

■ Development of an individual employment plan to identify the employment goals, 

appropriate achievement objectives, and appropriate combination of services for the 

participant to achieve his or her employment goals, including information about eligible 

training providers

■ Group counseling

■ Individual counseling

■ Career planning

■ Short-term pre-vocational services including development of learning skills, communication 

skills, interviewing skills, punctuality, personal maintenance skills, and professional conduct 

services to prepare individuals for unsubsidized employment or training

■ Internships and work experiences that are linked to careers

■ Workforce preparation activities

■ Financial literacy services

■ Out-of-area job search assistance and relocation assistance

■ English language acquisition and integrated education and training programs

Eligibility for Adult Program or 

Dislocated Worker Program

1. U.S. Citizen or otherwise legally entitled to 

work in the U.S.

2. Age 18 or older

3. Selective Service Registration (males who 

are 18 or older; born on or after January 1, 

1960) unless an exception is justified.

The law mandates that each state/regional 

WIOA program establish priority populations.

Wagner-Peyser and WIOA

Wagner-Peyser Act of 1933 was amended under 

WIOA 2014. The Wagner-Peyser Act provides a 

nationwide system of public employment offices, 

known as the Employment Service, that brings 

together individuals seeking employment with 

employers seeking workers (U.S. Department of 

Labor, Wagner-Peyser Act Employment Service 

Results).

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 123
Priority Populations (varies by state)

■ People who are low-income, recipients of public assistance

■ People with basic skills deficient

■ People who are unemployed 

■ People with a disability

■ People with a barrier to employment

■ Veterans and spouses

■ A dislocated worker is an individual who was terminated, laid off, or received a notification 

of termination or lay off

■ It is unlikely the individual will return to the previous employment or occupation

■ Has exhausted unemployment compensation or not eligible for unemployment compensation

■ A person who lost employment due to permanent closure of a plant, facility, or enterprise, 

and it was announced 180 days prior to closure

■ Was self-employed and due to economic conditions is now considered unemployed

■ A person who is no longer supported by another individual (i.e., due to divorce, death, disability)

■ A spouse of a member of the armed forces on active duty and whose family income is 

significantly reduced because of deployment

■ A person, including the spouse of a member of the armed forces, who is unemployed or 

underemployed and experiencing difficulty in obtaining or upgrading employment

■ A non-retiree who was discharged/released from service (other than dishonorable) and 

received a notice of military separation

■ The spouse of a member of the armed forces on active duty, and who has experienced a 

loss of employment as a direct result a change in duty station/location

Pacific Mountain Workforce Development

Vocational Rehabilitation (VR)

Vocational Rehabilitation (VR) is a federally 

funded program that provides employment 

and training services in every state, territory, 

and many American Indian Nations. Vocational 

Rehabilitation serves all disability groups, but 

some states have a separate program called 

State Services for the Blind that provides 

specialized services for people with legal 

blindness (Career One Stop).

124 National Council on Disability/National Indian Council on Aging
Eligibility for Youth Services

■ In-school youth, aged 14 to 21, who is 

attending school, including secondary and 

postsecondary school 

■ In-school youth with a disability who meet 

the low-income definition, which is based 

on the individual’s own income rather than 

the family’s income

■ Out-of-school youth with a disability—there 

is no low-income requirement

■ Youth with a basic skills deficit as 

determined by valid and appropriate 

assessments, with reasonable 

accommodations provided for youth with 

disabilities

(The LEAD Center 2016)

Vocational Rehabilitation (VR) programs vary 

greatly from state to state and tribe to tribe. 

Tribal VR programs differ 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 Occupational Outlook Handbook 

description of Vocational Rehabilitation 

counselors is, “Rehabilitation counselors help 

people with physical, mental, developmental, 

or emotional disabilities to live independently. 

They work with clients to overcome or 

manage the personal, social, or psychological 

effects of disabilities on employment or 

independent living”(U.S. Bureau of Labor 

Statistics 2021).

Tribal Vocational Rehabilitation 

Programs

American Indian tribes (as described in Section 

VII of the Rehabilitation Act of 1973 as amended) 

located on federal and state reservations 

may apply for American Indian Vocational 

Rehabilitation Services (AIVRS) discretionary 

grants through a competitive process with 

funding for five years, which is administered by 

the Rehabilitation Services Administration within 

the U.S. Department of Education.

“According to the 2020 Federal Register’s 

Notice of Applications for American Indian 

Vocational Rehabilitation Services, the estimated 

average size of awards will be $531,000 and 

the estimated number of awards will be 51” 

(U.S. Department of Education Office of Special 

Education and Rehabilitative Services 2020).

Unfortunately, not all tribes have a VR 

program. States, territories, and the District of 

Columbia receive funds calculated through a 

statutory formula based on population and per 

capita income.

Barriers Created by the 

Rehabilitation Services 

Administration

In the 2003 version of this toolkit, the average 

award to American Indian VR programs was 

$350,000. Although the average amount of the 

VR awards to tribes has increased to $531,000, 

the program remains a competitive discretionary 

grant, and tribes who may have had VR services 

in the past could lose their VR funding during 

the next funding cycle, thus creating a lack of 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 125
What Does a Rehabilitation Counselor Do?

■ Provide individual and group counseling to help consumers adjust to their disability

■ Evaluate consumers’ abilities, interests, experiences, skills, health, and education

■ Develop a treatment plan for consumers in consultation with others

■ Arrange for consumers to obtain services such as medical care or career training

■ Help employers understand disability laws, resources, and the needs and abilities of 

people with disabilities

■ Help consumers develop their strengths and accommodate their limitations

■ Locate resources such as wheelchairs or computer programs that help consumers live and 

work independently

■ Maintain consumer records and monitor consumers’ progress

■ Advocate for the rights of people with disabilities to live in a community and work in the 

job of their choice

(U.S. Bureau of Labor Statistics 2021)

continuity in VR services to its tribal members. 

Tribes that have never had VR funding could be 

awarded a grant for the first time, which can 

present start-up and capacity-building challenges. 

The way VR funds are allotted creates additional 

barriers for tribes who are attempting to provide 

a much-needed service to their tribal members 

with disabilities.

What Services Are Available from 

Vocational Rehabilitation?

Vocational Rehabilitation is an individualized 

employment program. Participants may receive 

diagnosis, an individualized rehabilitation 

program, counseling and guidance, training, 

job placement, and services to support job 

retention. Many applicants are referred by 

schools, hospitals, welfare agencies, and other 

organizations, but an individual may apply directly 

for services (Career One Stop).

Some people with disabilities enroll in both 

state Vocational Rehabilitation programs and 

tribal Vocational Rehabilitation programs, and 

the needed services are split between the two 

programs. For example, the tribal Vocational 

Rehabilitation program may provide career 

exploration and placement services, while 

the state Vocational Rehabilitation program 

provides transportation services to and from 

the person’s job.

How Do You Apply for VR Services?

Contact your local office for the specific process 

to apply. You will be asked to submit a written 

application, and eligibility decisions are made 

within 60 days of application.

126 National Council on Disability/National Indian Council on Aging
Who Is Eligible for VR Services?

To qualify for VR services, an individual must:

■ Have a physical or mental impairment that presents a substantial barrier to employment; 

and be able to benefit from VR services to achieve employment

■ Need VR services to prepare for a job, or to get, keep, or regain a job

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. Some states have added emotional, learning or/and cognitive and 

“other forms of disability, and can benefit from VR services to achieve an employment outcome

■ People who receive Supplemental Security Income (SSI) and/or Social Security Disability 

Insurance (SSDI) benefits are considered eligible for VR, unless too disabled to benefit

(CareerOneStop)

To find your nearest local office, contact your 

state’s Vocational Rehabilitation office, or through 

the American Job Center network, where many 

Vocational Rehabilitation staff are located.

■ State Vocational Rehabilitation Offices: 

https://askearn.org/page/108

■ American Job Center Finder (One Stop 

Career Center Finder) https://www

.careeronestop.org/LocalHelp

/AmericanJobCenters/find-american-job

-centers.aspx

■ American Indian Vocational Rehabilitation 

Service Projects http://aivrttac.org/contact/

(CareerOneStop)

Other Disability Employment 

Programs

The Ticket to Work Program (TTW) helps 

people aged 18–64 who receive Social Security 

due to a disability find work and keep their health 

coverage.

■ Ticket to Work Program https://

yourtickettowork.ssa.gov/

■ Phone: (866) YOURTICKET; 866-968-7842

■ TDD: (866) TDD2WORK; 866-833-2967

Veterans ReEmployment for help with 

employment, training, and financial assistance.

Veteran and Military Transition Center https://

www.careeronestop.org/Veterans/default.aspx

Independent Living Centers (ILCs) provide 

job coaching, training, and information on 

disability in the workplace to help people with 

disabilities maintain their independence. Find 

your nearest Independent Living Center.

Directory of Independent Living Centers:

https://www.ilru.org/projects/cil-net/cil-center-and

-association-directory

(CareerOneStop)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 127
(First Peoples Fund)

Self-Employment & 

Entrepreneurship

Self-employment has long been a means of 

sustenance for tribal members, particularly 

for those living in rural reservation areas. 

Many people with disabilities are interested 

in the opportunity self-employment offers 

to meet professional, cultural, and financial 

goals. Starting one’s own business can 

be intimidating, but the Pine Ridge Indian 

Reservation Case Study described below 

is a model of how culture can cultivate 

entrepreneurial initiatives and community 

development programs.

For entrepreneurs with a disability, 

the Office of Disability Employment 

Policy (ODEP) is a federal agency that 

encourages and supports self-employment 

and entrepreneurship among people with 

disabilities and has helped foster an array of 

partnerships at the federal, state, and local 

levels to encourage access to funding and 

resources to assist people with disabilities 

interested in alternatives to traditional 

employment (U.S. Department of Labor Office 

of Disability Employment Policy, n.d.)

Pine Ridge Entrepreneurship Case 

Study: Rolling Rez Arts

The bonds that form when artists have 

the chance to work together is reflected 

in the strengthening of First Peoples 

Fund’s [FPF] network of nonprofit partners and regional and national funders. At 

128 National Council on Disability/National Indian Council on Aging
FPF, we always talk about tightening that 

weave, and as we weave, our work is 

growing in the region into what will result 

in a tightly woven sweetgrass braid.

(Hutter 2017)

The Pine Ridge Indian Reservation offers a 

case study on how to leverage resources and 

partnerships to develop entrepreneurs and homebased businesses that channel creativity toward 

economic and social empowerment.

Background on Rolling Rez Arts

A 2013 white paper, Establishing a Creative 

Economy: Art as an Economic Engine in Native 

Communities, inspired the creation of Rolling 

Rez Arts. The Pine Ridge Indian Reservation 

spans nearly 3,500 square miles, and, when 

the paper was published, 80 percent of the 

population were unemployed and 98 percent 

lived below the poverty line. The community 

largely used an informal trade-and-barter 

economy. Most had never used a checking 

or savings account or received a bank loan 

(Hutter 2017).

Founding of Rolling Rez Arts

To advance the interests of Native artists in 

remote places and to bring services to the 

artists, the Rolling Rez Arts bus was fashioned. 

In 2016, this tricked-out airport shuttle bus began 

rolling as a mobile artist studio, classroom, 

bank, and marketplace that traveled across the 

reservation.

Inside the bus are tables for workshops, 

computers with design and film editing 

software, cameras, a cash register, a safe, and 

air conditioning. In the first year, there were 67 

(Oglala Lakota Artspace)

classes to more than 350 people across Pine 

Ridge and neighboring Cheyenne River and 

Standing Rock Reservations (Hutter 2017).

First Peoples Fund (FPF) was founded in 

1995 with a belief in the “Collective Spirit,” 

a commitment to honor our humanity, 

connection, the land, those who came before 

us, and the spirit of all things. First Peoples 

Fund secures funding to honor and support 

First Peoples artists and culture bearers (First 

Peoples Fund).

First Peoples Fund secured funding from 

National Endowment for the Arts, ArtPlace 

America, The Bush Foundation, Northwest Area 

Foundation, USDA Rural Development, and later 

The Ford Foundation to create Rolling Rez Arts 

(Hutter 2017).

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 129
Banking Services

Banking Services are provided by Lakota Funds 

and Lakota Federal Credit Union, established 

in 2012 as the only federally insured financial 

institution serving Pine Ridge.

Lakota Funds was established in 1986 and 

at the time 85 percent of its customers had 

never used a checking or savings account. 

In 2017, Lakota Funds had made 900+ loans 

totaling $7.2 million and created 1,415 new 

jobs and 500 new businesses on Pine Ridge 

(Hutter 2017). The banking services on Rolling 

Rez Arts are:

■ Business loans

■ Technical assistance

■ Financial management training

■ A mobile banking unit so customers in 

far-flung places have access to personal 

financial services

Classroom

Rolling Rez Arts is a classroom and contracts 

with local Native artists to offer:

■ FPFs Native Artist Professional Development 

curriculum

■ How to write a business plan

■ How to create a budget

■ Pricing strategy

■ Cultural Capital

■ Artist in Business Leadership Programs

■ Art classes, ranging from traditional to 

contemporary, such as ledger art and 

beadwork to comic illustrations and video 

editing (Hutter 2017)

Marketplace

Artists can sell their artwork at “buyer’s days” 

from the bus and across the reservation instead 

of spending time and gas on driving to retail 

outlets. Art is also sold online and in the gift shop 

of the Heritage Center at the Red Cloud Indian 

School (Hutter 2017).

Ripple Effect of Rolling Rez Arts: Oglala 

Lakota Artspace

The Oglala Lakota Artspace was funded by 

ArtPlace America, U.S. Economic Development 

Administration, The Bush Foundation, Ford 

Foundation, Hearst Foundation, National 

Endowment for the Arts, U.S. Department of 

Agriculture, The Hayes Fund of HRK Foundation, 

and Margaret A. Cargill Philanthropies (Artspace).

To further promote economic sustainability 

through the arts, First Peoples Fund and its 

partners opened the Oglala Lakota Artspace, an 

8,500 square foot facility with artist studios and 

a business incubator. It is located next to the 

Lakota Prairie Ranch Resort below the Oglala 

Lakota College campus. The college refers 

students, provides instructors, and spreads 

the word across all nine college campuses and 

reservation districts (Hutter 2017). The coworking 

space provides business training, networking, 

and administrative offices. The facility houses:

■ Artist studios

■ Recording studio

■ Film editing studio

■ Computer lab

■ Classroom space

■ Commercial space

■ Outdoor market space

130 National Council on Disability/National Indian Council on Aging
■ Community gathering space

■ Lakota Federal Credit Union storefront

■ Garage for Rolling Rez Arts bus

■ Homebase for Dances with Words (First 

Peoples Fund)

The Gig Economy

The gig economy is characterized by employers, 

usually in the service sector, who typically use 

short-term contractors or freelance workers, 

also referred to as contingent workers, instead 

of hiring employees. Gig economy statistics 

from a 2021 article on the Fortunly website 

explains the impact of the common practice of 

hiring contingent workers and why it is the “new 

normal.”

■ On average, gig workers earn 58% less than 

full-time employees. More than half don’t 

have access to employer-provided benefits, 

such as health care and retirement

■ 74.6% of all contingent workers are white

■ More than one-third of U.S. workers (36%) 

participate in the gig economy, either 

through primary or secondary jobs.

■ 57% of gig economy workers say they work 

more than 40 hours per week

■ The total freelancing income is 5.7% of U.S. 

gross domestic product (Mitic 2021)

■ In 2017, 2% of gig workers were American 

Indian or Alaskan Native (Steward and 

Greenberg 2019)

Telecommuting

Many employers have discovered the benefits 

of allowing employees to work at home through 

telework (also known as telecommuting). 

Telework has allowed employers to attract 

and retain valuable workers by boosting 

employee morale and productivity. Technological 

advancements have also helped increase telework 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 131
options by allowing employees to work from 

home or another approved alternate location.

Not all persons with disabilities need—

or want—to work at home, and not all jobs 

can be performed at home. However, these 

technological advancements can expand options 

and opportunities for people with disabilities. 

Allowing an employee to work at home may be a 

reasonable accommodation where the person’s 

disability prevents successful job performance 

on-site. The consideration of a work-from-home 

accommodation follows different statutory 

authority than a request to work from home by 

employees without disabilities under an agency’s 

telework policy. Work from home is viable when 

the job, or parts of the job, can be performed 

at home without causing significant difficulty or 

expense (Telework Guidance).

Reasonable accommodations enhance the 

opportunity for qualified people with disabilities 

who may not otherwise be considered for 

employment for reasons unrelated to actual 

job requirements. The purpose of providing 

reasonable accommodations is to enable 

employers to hire or retain qualified job 

candidates regardless of their disability by 

eliminating barriers in the workplace (Leedom 

and Brynelson 2019).

Resources

Organization What They Do Contact Info

American Indian 

Vocational 

Rehabilitation 

Training and 

Technical Assistance 

Center

(AIVRTTAC)

AIVRTTAC provides education, 

guidance, and technical assistance 

(TA) to American Indian Vocational 

Rehabilitation Services (AIVRS) 

Programs. We operate on tribal lands

in 25 states to help tribal members 

with disabilities prepare for and obtain 

gainful employment

To find your local American 

Indian Vocational Rehabilitation 

Program:

http://aivrttac.org/contact

Co-Project Directors:

Lee.gaseoma@nau.e

Wayne.dagel@nau.e

Phone: 928 523-5590

Fax: 928 523-9127

Website:

https://aivrttac.org

America Job Center 

Finder

To find your local One Stop Career 

Center

https://www.careeronestop.or

LocalHelp/AmericanJobCenters/

find-american-job-centers.asp

Consortia of 

Administrators for 

Native American 

Rehabilitation 

(CANAR)

CANAR is a membership organization 

of the rehabilitation administrators 

who serve Native Americans and 

Alaskan Natives living on or near 

reservations or villages

(CANAR)

Council of State Administrators 

of Vocational Rehabilitation

1 Research Court, Suite 450

Rockville, MD 20850

Phone: 301-519-8023

Website:

https://www.csavr.org/can

132 National Council on Disability/National Indian Council on Aging
Organization What They Do Contact Info

Directory of 

Independent Living 

Centers

ILCs provide job coaching, training, 

and information on disability in 

the workplace to help people 

with disabilities maintain their 

independence

Find your nearest Independent 

Living Center:

https://www.ilru.org/project

cil-net/cil-center-and-associationdirectory

Federal Sector 

Equal Employment 

Opportunity

(FSEEO)

FSEEO is the office where a complaint 

alleging disability discrimination 

under Title II of the ADA can be filed 

against a state or local government 

or a public accommodation (a private 

business, including a restaurant, 

doctor’s office, retail store, hotel, etc.

Federal Sector Equal Employment 

Opportunity Complaint 

Processing Guidelines:

https://www.eeoc.gov/federalsector/overview-federal-sectoreeo-complaint-proce

To file an ADA complaint online:

https://civilrights.justice.go

report/

To talk with an ADA specialist, call

Voice: 800-514-0301

TTY: 800-514-0383

National 

Association of 

Multicultural 

Rehabilitation 

Concerns

(NAMRC)

NAMRC promotes cultural diversity 

and disability through advocacy for 

excellence and equity in rehabilitation 

research, education, and practice

NAMRC

633 South Washington Street

Alexandria, VA 22314

Phone: 703-836-0850

Fax: 703-836-0848

Website: https://www

.nationalrehab.org/nam

National 

Rehabilitation 

Association

NRA is a professional membership 

organization that promotes ethical and 

collaborative rehabilitation practice

NRA is comprised of counselors, 

educators, researchers, and provides 

its members with training, education, 

and credentialing

Website: https://www

.nationalrehab.o

Office of Native 

American Affairs 

Resources

ONAA is an office within the U.S. Smal

Business Administration. The goal

of ONAA is to promote and support 

Native American entrepreneurs. The

ONAA engages in numerous outreach 

activities including tribal consultations, 

development and distribution of 

promotional materials, and attendance 

and participation in national economic 

development conferences

Website: https://www.sba.go

about-sba/sba-locations/

headquarters-offices/officenative-american-affairs

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 133
Organization What They Do Contact Info

RedWind RedWind is a Native-operated technical 

assistance firm that helps transform 

and build strong tribal nations, 

enterprises, and organizations

RedWind offers a Native American 

Entrepreneurial Workshop

Website: https://www

.nativesmallbusiness.or

Rehabilitation 

Services 

Administration 

(RSA)

RSA provides leadership and 

resources to assist state and other 

agencies in providing Vocational 

Rehabilitation and other services to 

people with disabilities to maximize 

their employment, independence, and 

integration into the community and 

the competitive labor market

https://www2.ed.gov/abou

offices/list/osers/rsa/index.htm

Sister Sky, Inc. Sister Sky, Inc., presents Native

Business Development Empowerment 

Workshops under contract with the 

Office of Native American Affairs 

(ONAA). Sister Sky, Inc., is a 10

percent Native American–owned, 

SBA-certified 8, and an Economically 

Disadvantaged Woman Owned Small 

Business (EDWOSB)

Website: https://nativesba

.sisterskyinc.co

State Vocational 

Rehabilitation 

Offices

(VR)

To find your state VR office. State Vocational Rehabilitation

Offices: https://askearn.org

age/108

Ticket-to-Work For people aged 18–64 who receive 

Social Security Disability Insurance

Ticket to Work Program https://

yourtickettowork.ssa.go

Phone:

(866) YOURTICKET; 

(866) 968-7842

TDD:

(866) TDD2WORK; 

866-833-2967

U.S. Department of 

Education

Office of Special 

Education and 

Rehabilitative 

Services (OSERS)

The mission of OSERS is to improve 

early childhood, educational, and 

employment outcomes and raise 

expectations for all people with 

disabilities, their families, their 

communities, and the nation

Office of Special Education and 

Rehabilitative Services

400 Maryland Ave., S

Washington, DC 20202-7100

Phone: 202-245-7468

Website:

https://www2.ed.gov/abo

/offices/list/osers/index

.html?src=o

134 National Council on Disability/National Indian Council on Aging
Organization What They Do Contact Info

U.S. Department of 

Justice, Civil Rights 

Division

To file a complaint alleging disability 

discrimination under the Americans 

with Disabilities Act

U.S. Department of Justi

Civil Rights Division

950 Pennsylvania Ave., N

4CON, 9th Floor

Washington, DC 20530

To file a complaint by fax:

202-307-1197

ADA Specialist

Phone: 800-514-0301

TTY: 800-514-0383

Guide to Disability Rights Laws 

website: https://www.ada.go

cguide.ht

Website:

https://www.justice.gov/cr

disability-rights-section

U.S. Equal 

Employment 

Opportunity 

Commission

(EEOC)

The office where a person can file a 

job discrimination complaint

Phone: 800-669-4000

TTY/TDD: 800-669-6820

To find an EEOC Field Office:

https://www.eeoc.gov/field-offi

Veteran and 

Military Transition 

Center

If you are a veteran with a disability, 

check out Veterans ReEmployment for 

help with employment, training, and 

financial assistance

https://www.careeronestop.or

Veterans/default.asp

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 135
136 National Council on Disability National Council on Disability/National Indian Council on Aging
Chapter 7: Assistive Technology

“Devices make me very independent in my personal and 

professional life. I can verbally state text messages, and 

texts received are read to me. I can use verbal command 

to call, check missed calls, and voicemail. I also have a 

Note Taker with verbal reading capability, and I use it when 

attending meetings.”

Hoskie Benally

What Is Assistive Technology?

Assistive technology (AT) is any item, 

piece of equipment, software program, or product system that is used 

to increase, maintain, or improve the 

functional capabilities of persons with 

disabilities.

Assistive Technology 

Industry Association

Assistive Technology Products can enable 

people with disabilities to accomplish daily 

living tasks; assist them in communication, 

education, work, or recreation activities; 

and, in essence, help them achieve greater 

independence and enhance their quality of life. 

Assistive Technology devices can help improve 

physical or mental functioning, overcome 

a disorder or impairment, help prevent the 

worsening of a condition, strengthen a physical 

or mental weakness, and help improve a 

person’s capacity to learn.

Assistive Technology Services support people 

with disabilities or their caregivers to help 

them select, acquire, or use adaptive devices. 

Such services include functional evaluations, 

training on devices, product demonstration, and 

equipment purchasing or leasing.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 137
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

Examples: elongated flatware handle, shower bench, long-handled 

hairbrush and comb, weighted drinking glass, doorknob extension, 

bed rail, dressing stick, reacher, long-handled shoehorns, button hook, 

Velcro

Augmentative 

or Alternative 

Communication 

(AAC)

Electronic and non-electronic devices that provide a means for 

expressive and receptive communication for people with limited or no 

speech

Examples: picture exchange systems, binders of picture symbols, 

recorded speech devices, electronic table speech applications (software 

like ProLoQuo2Go), speech generating devices (also called “durable 

medical equipment”)

Aids for the Deaf or 

Hard of Hearing

Aids that facilitate communication between a Deaf or Hard of Hearing 

person and hearing people

Examples: telephone handset amplifiers, hearing aids (compatible with 

cell phones and television), FM loop systems, infrared systems, open 

or closed captioning, video remote interpreting, TTYs (text telephones), 

visual and tactile alerting systems

Aids for the Blind or 

Low Vision

Aids vary on need and can include service dogs, electronic mobility 

aids, or provide reading assistance

Examples: magnifiers, Braille or speech output devices, large print 

screens, closed circuit television for magnifying documents, solar 

shield documents, wearable artificial intelligence technology that reads 

text, recognizes faces, and identifies products

Artificial Intelligence 

(AI)

AI refers to smart machines or algorithms that can perform cognitive 

tasks usually made by humans that remove accessibility barriers 

through different solutions

Examples: screen-readers, voice-controlled virtual personal assistants 

(i.e., Alexa or Siri), transcription apps, text-to-speech applications, app

that normalize speech, apps that map accessible public venues, apps 

that describes outdoor physical surroundings (Martinez 2021), robotic 

canes with 3D cameras (National Eye Institute 2021)

Computer Access Input and output devices that enable people with disabilities to use a 

computer

Examples: braille, headsticks, light pointers, modified keyboards, 

switches, software like speech recognition software

Environmental 

Control Systems

Primarily electronic systems that enable someone with limited mobility 

to control various appliances, electronic aids, security systems, etc., in

their room, home, or other surroundings

Home/Worksite 

Modifications

Structural adaptations or fabrications in the home, worksite, or other 

areas that remove or reduce physical barriers for a person with a 

disability

138 National Council on Disability/National Indian Council on Aging
Category Types of Assistive Technology

Examples: slip resistant surfaces, sloping walkways, ramps, mechanical 

stair lifts, grab bars, floor-to-see poles, widened doorways/spaces, 

walk-in tubs, audio-visual alarms, furniture adaptations, special 

keyboards

Prosthetics and 

Orthotics

Specially fabricated medical supportive devices that fit the patient

They relieve pain and replace, substitute, or augment missing or 

malfunctioning body parts. There are also prosthetics to assist with

cognitive limitations or deficits, including audiotapes or pagers (that 

function as prompts or reminders)

Examples: Artificial limbs splints, braces, gait plates, casts, night bars 

and heel/arch support

Seating and 

Positioning

Equipment that enables a functional seating position to reduce or 

eliminate the need for human assistance and fatigue. 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

Examples: Lumbar cushions, contour seats, footrest, standing desk, Trip 

Trapp chair (grows with the child)

Service Animals The Americans with Disabilities Act defines a service animal as any 

guide dog (for people who are blind or have low vision), signal dog (for 

people who are Deaf or Hard of Hearing), or other animals individually 

trained to aid a person 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

Examples: Wheelchairs, scooters, power chairs, walkers, canes, 

crutches

Vehicle Modifications Adaptive driving aids, hand controls, wheelchair lifts, modified vans, or 

other motor vehicles used for personal transportation

How Do You Choose the Right 

Assistive Technology?

Most often, the right technology choice is made 

by the disabled person (or family member) and a 

team of professionals or consultants trained to 

match assistive technologies to an individual’s 

specific needs.

An AT team may include family doctors, 

regular and special education teachers, 

speech-language pathologists, rehabilitation 

engineers, occupational therapists, physical 

therapists, and other specialists including 

consulting representatives from companies that 

manufacture assistive technology (Assistive 

Technology Industry Association).

Who Pays for Assistive 

Technology?

Who pays for AT depends on the technology, the 

use, and the user? Many kinds of AT may cost 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 139
What to Ask About Assistive Technology

1. Does this tool address your specific needs and challenges?

2. Does it use your strengths?

3. Is there a simpler tool that would work as effectively?

4. Will it be easy to incorporate into everyday life?

5. Is it portable?

6. Are you willing to use it?

7. How easy is it to learn to use the tool?

8. Will you have support or training in how it works?

9. Will people who support you receive support or training in how it works?

10. Is the tool compatible with the existing technology you use? (For example, will the 

software work on your mobile device or computer?)

11. How reliable is the device?

12. What technical support is available?

13. For school-aged children, is the tool purchased for school use only, or does your child 

have access to a comparable tool at home?

Morin

little or nothing, even for very expensive items. 

For example:

■ School systems pay for special education 

learning materials as well as technology 

specified in an Individualized Education 

Program (IEP).

■ Government programs (Social Security, 

Veterans Affairs, Medicare, or state 

Medicaid or Worker’s Compensation 

agencies) pay for certain assistive 

technology if a doctor prescribes it as a 

necessary medical device.

■ Private health insurance pays for certain 

assistive technology if a doctor prescribes it as 

a necessary medical or rehabilitative device.

■ Rehabilitation and job training programs, 

whether funded by government or private 

agencies, may pay for assistive technology 

and training to help people get and retain jobs.

● Client Assistance Programs (CAP): 

Most states have a CAP to advise 

and inform clients/consumers of all 

available services and benefits under the 

Rehabilitation Act of 1973.

140 National Council on Disability/National Indian Council on Aging
■ Employers may pay for assistive technology 

that is a reasonable accommodation to 

enable an employee to perform essential 

job tasks (Assistive Technology Industry 

Association).

■ Many State AT Programs provide adaptive 

telecommunications equipment for Deaf and 

Hard of Hearing people and others who need 

adaptive equipment for telecommunications 

(ADA National Network).

If you are unsure how to get support for the 

purchase of AT, start with the tribal, state, or 

federal agency that you are already working with. 

If you’re not working with an agency, go to your 

state’s Assistive Technology Program.

Assistive Technology Alternative 

Financing Program

The AT Alternative Financing Program (AFP) is 

an annual competitive grant opportunity offered 

by the Administration for Community Living. 

Entities that can apply are state governments, 

public institutions of higher education, federally 

recognized tribal organizations, AI/AN tribal 

governments, and nonprofits. The purpose of the 

grants is to assist people with disabilities of any 

age to obtain financial assistance for AT devices 

and services. Approximately six organizations 

Important requirement

Funding sources often require a statement 

of medical necessity for the product or 

equipment and a prescription from a doctor 

or other health professional.

are awarded grants each year. Types of AT 

purchased through AFP:

■ Modified vehicles

■ Home modifications

■ Hearing aids

■ Vision aids

■ Adapted computers (RESNA)

State Assistive Technology 

Programs

State AT Programs promote awareness of and 

access to AT devices and services to people with 

disabilities for their entire life span. Services are 

also provided to families or guardians, service 

providers, other agencies/entities who provide 

services such as education and employment, and 

to people with disabilities.

Statewide Assistive Technology 

Programs offer:

■ Information about what devices and 

services are available and where to obtain 

them

■ Device loan and demonstration, and in some 

states, borrowing programs to “try out” 

devices

■ Funding resources for purchasing or 

acquiring assistive technology

■ Device exchange and recycling programs 

(also called reutilization) that provide people 

with used equipment at little to no cost 

(RESNA)

Directory of state AT Programs: https://

at3center.net/state-at-programs/

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 141
State Protection and Advocacy 

Programs (P&A)

The Assistive Technology Act of 1998 provides 

protection and advocacy services to people of all 

ages with disabilities in the acquisition, utilization, 

or maintenance of assistive technology services 

or devices.

P&As provide information, advocacy, 

representation, training, technical assistance, 

and general guidance to increase access to and 

provision of assistive technology devices and 

services.

P&As also provide legal support to traditionally 

unserved or underserved populations to help 

them navigate the legal system to achieve 

resolution and encourage systems change 

(Administration for Community Living).

Directory of state P&As: https://acl.gov/

programs/aging-and-disability-networks/stateprotection-advocacy-systems.

Assistive Technology Resources

Who What Website or Contact Info

Able Eyes Able Eyes is a tool that provides virtual 

walk-through tours of public spaces 

so people with disabilities can explore 

accessibility before visiting the space

https://www.ableeyes.or

Administration 

for Community 

Living

State Protection & Advocacy Systems

To find the state directory, scroll down the 

page to the heading “P&A Programs”

In the menu, click on the plus sign next to 

“Find your P&A Agency”

State Directory:

https://acl.gov/programs/agingand-disability-networks/stateprotection-advocacy-system

American Indian 

Vocational 

Rehabilitation 

Training and 

Technical 

Assistance 

Center 

(AIVRTTAC)

AIVRTTAC provides education, guidance, 

and technical assistance (TA) to American 

Indian Vocational Rehabilitation Services 

(AIVRS) Programs

On the website are webinars, toolkits, 

products and tools, and publications

American Indian VR Training 

and TA Center

PO Box 5630

Flagstaff, AZ 86011-5630

https://aivrttac.org

Phone: 928-523-5590

Fax: 928-523-9127

Email: aivrttac@nau.ed

Co-Project Directors:

Lee.gaseoma@nau.e

Wayne.dagel@nau.e

142 National Council on Disability/National Indian Council on Aging
Who What Website or Contact Info

AT3 Center

(Assistive 

Technology 

Act Technical 

Assistance and 

Training Center)

AT3 Center helps increase access 

to acquisition of AT for people with 

disabilities across the lifespan

Directory of each State’s AT contact info 

for:

■ State AT Program

■ Device loan

■ Device demo

■ Device reutilization

■ Financial loan

https://at3center.net

State Directory:

https://at3center.net/state-atprograms

The Assistive 

Technology 

Network

The Assistive Tech Network’s Community 

of Practice connects people with 

disabilities and older adults, AT providers 

and social service case managers, and 

AT industry representatives through an 

innovated social media platform

https://cidi.gatech.edu/researc

assistive-technology/technetwork

Assistive 

Technology 

Industry 

Association

ATIA is a membership organization of AT 

manufacturers and sellers. It educates the

public and conducts research on AT

It hosts webinars for teachers and 

practitioners

https://www.atia.or

Assistive Technology Industry 

Association (ATIA)

330 N. Wabash Ave., Ste 20

Chicago, IL 60611-4267

Toll-Free: 877-OUR-ATIA

(1-877-687-2842)

Phone: 312-321-5172

Fax: 312-673-6659

E-mail: info@ATIA.or

Center for 

Applied Special 

Technology

(CAST)

CAST is “busting barriers” with leadingedge practices to educational design and 

implementation

https://www.cast.or

CAST is an early leader 

in showing how assistive 

technology creates improved 

student outcomes

Current & Past CAST projects:

https://www.cast.org/ourwork/accessibility-inclusivetechnolo

Closing the Gap Closing The Gap provides practical, up-todate information on assistive technology 

products, procedures, and best practices

https://www.closingthegap.co

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 143
Who What Website or Contact Info

Innovations 

in Special 

Education 

Technology

(ISET)

ISET is a division of the Council for 

Exceptional Children (an educator and 

education researcher membership 

organization)

https://www.isetcec.or

Learning 

Disability 

Research 

Foundation

(LDRF)

LDRF provides information on AT, 

tools, and how to incorporate AT in the 

classroom (digital books, text-to-speech, 

speech-to-text, organizational tools, and 

more)

https://www.ldrfa.org/assistivetechnolog

Pass It On 

Center

A national AT Reuse program that 

coordinates and networks with entities 

involved in AT reutilization

https://pioc.gatech.edu/pio

Quality 

Indicators 

for Assistive 

Technology 

Services

(QIAT)

QIAT is a grassroots group to promote 

quality indicators for AT services

QIAT Resource Bank

■ Operating guides and procedures

■ Educator resources

■ Tools (inclusive practices and 

technology

■ Data & service planning

■ Tips for specific devices and software

https://qiat.org/resources

resources-bank/

Rehabilitation 

Engineering 

and Assistive 

Technology 

Society of 

North America 

(RESNA)

RESNA in a nonprofit professional 

membership organization

RESNA offers certification, continuing 

education, and professional development; 

development of assistive technology 

standards; research and public policy; and 

sponsors forums

https://www.resna.or

RESNA offers a free online tool 

to find assistive technology 

professionals near you

https://www.resna.org/CertifiedProfessionals-Directo

Phone: 202-367-1121

Email: info@resna.or

Technology in 

Early Childhood 

Center

(TEC Center)

TEC Center is a research center and 

professional development provider 

with expertise in child development and 

children’s digital media and technology 

use

Provides professional development to 

early-childhood educators

https://www.erikson.ed

professional-development/

tec-center/

Trace 

Research and 

Development 

Center

Trace engages in research, development, 

tech transfer, education, policy, and 

advocacy

Look at the Trace web pages: 

projects, software and tools

https://trace.umd.ed

144 National Council on Disability/National Indian Council on Aging
Who What Website or Contact Info

United Cerebral 

Palsy

UCP connects people and families with 

resources and services for people with 

disabilities. There is also a UCP local

affiliate locator online

UCP Resource Guide

https://ucp.org/resource-guide

Veterans Affairs Veterans Affairs Assistive Technology 

homepage has information on:

■ AT categories

■ Device review

■ Resources

■ Education

■ Newsletters

https://www.prosthetics.va.g

AssistiveTechnology/index.as

Web 

Accessibility 

Initiative

(WAI)

WAI provides strategies, standards, and 

resources to make the Web accessible to 

people with disabilities

https://www.w3.org/WA

Guidance and Sources of AT Grants

Who What Website or Contact Info

Association of 

Blind Citizens

The Association of Blind Citizens 

operates an Assistive Technology 

Fund to provide funds to cover 50 

percent of the retail price of adaptive 

devices or software

Assistive Technology Fund:

https://blindcitizens.org/assistivetechnology-fund

Bureau of Indian 

Education

A National Assistive Technology 

Resource list that includes:

■ National AT Resources

■ Selected Vendors and 

Manufacturers

■ National Equipment Resources/

Foundations

■ Alternative Financing Programs 

by state

■ National Funding Sources

■ Grants for Assistive Technology

An undated 30-page list of AT 

resources and grant and funding 

sources

https://www.bie.edu/sites/defaul

files/documents/idc-008209.pd

Easter Seals A Guide for Assistive Technology 

Grants

Fundraising Made Easy: A Guide for 

Assistive Technology Grants

https://www.easterseals.com/exploreresources/living-with-disability/astep-by-step-funding-plan.h

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 145
Who What Website or Contact Info

Goodwill Go to the Goodwill locator to find a 

local center. Some Goodwill Centers

participate in Assistive Technology 

Exchange programs and can help 

provide AT to their consumers

https://www.goodwill.org/locato

Kiwanis Clubs Their mission is to “make sure kids 

have what they need to be secure 

and successful.” Contact your local

Kiwanis Club to see if they can help 

provide assistive technology to a 

child in need

Kiwanis Club locator

https://www.kiwanis.org/clu

Knights of 

Columbus

Global Wheelchair Mission partners 

with the American Wheelchair 

Mission to donate wheelchairs

Global Wheelchair guide sheet

https://www.kofc.org/en/resource

faith-in-action-programs/community/

global-wheelchair-mission/10619-

wheelchair-guidesheet.pd

Lion’s Club The Lion’s Club accepts donations 

of eyeglasses and hearing aids and 

recycles them to give to those in 

need

They also provide medical care 

and education to combat vision 

impairment, blindness, and hearing 

loss

Children’s vision screenings

https://www.lionsclubs.org/

Eyeglasses and hearing aids 

recycling:

https://www.lionsclubs.org/e

explore-our-clubs/eyeglasses-andhearing-aids-recycling

Local Lions Club locator:

https://www.lionsclubs.org/e

start-our-approach/club-locator

Multiple 

Sclerosis 

Foundation

The MS Foundation’s Assistive 

Technology Program can help 

locate, partially fund, or provide full 

funding for one of a wide range of 

AT devices

To learn about the AT Program and 

access an application:

https://msfocus.org/Get-Help

MSF-Programs-Grants/

Assistive-Technology-Program

Muscular 

Dystrophy 

Association

The Muscular Dystrophy Association 

provides equipment assistance

https://www.mda.org/care/resourcelist/equipment-assistan

Equipment Assistance

1-833-275-6321

(1-833-ASK-MDA1)

Email: ResourceCenter@mdausa.or

United Cerebral 

Palsy Bellows 

Fund

UCP Bellows Fund provides funds to 

people with disabilities for assistive 

technology equipment

UCP Bellows Fund Grant information

https://ucp.org/affiliatepages

bellows-fund/

UCP Resource Guide

https://ucp.org/resource-guide

146 National Council on Disability/National Indian Council on Aging
Chapter 8: Transportation

“A lot of Native communities are rural and not around big cities. So 

just getting to the places off the reservation to get those services 

is an arduous process. Transportation is key to independence.”

Mateo TreeTop

Background

Many tribes, located in rural areas with 

a small population base, lack funding 

resources to maintain existing roads and 

address new improvements. Tribal communities need improvements to roads, 

bridges, highways to adequately connect 

their communities to other communities, 

thereby enhancing the opportunity for 

economic, educational, social, cultural, 

and community developments. As new 

economic and community development 

ventures expand in tribal communities, 

transportation is becoming a major 

planning component for land use, mobility, and accessibility.

San Diego Association of Governments and Southern California Tribal 

Chairmen’s Association 2018

T

he spectrum of transportation needs 

and barriers in Indian Country is as 

diverse as the land itself. Among the 574 

federally recognized tribes, the size, climate, and 

infrastructure of tribal lands vary, from the urbancentered Oneida Nation in Green Bay, Wisconsin, 

to the rural-based Cook-Inlet Tribe in the greater 

Anchorage area of Alaska. Services range from the 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 147
dedicated community health care workers who 

provide transportation services for the Yakama 

Nation in Washington State to the dispatchoperated fleet of fully accessible vans operated by 

the Pueblo of the Zuni in New Mexico.

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 

access to a reliable tribal public transportation 

system, these people 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 often determined to a great extent by 

community resources, or lack of them, more 

than by their own physical capabilities.

Barriers to Service

■ Remoteness and isolation (distance to 

services)

■ Limited public transportation services

■ Lack of accessibility (e.g., 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)

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 to begin this assessment 

process. Use the questions in 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 understandings and 

wisdom may grow to move the process forward.

Transportation Glossary

This transportation glossary will assist you 

in navigating resources in order to grow and 

develop your existing transportation framework. 

A complete glossary can be found on the Small 

Urban and Rural Center on Mobility website: 

https://www.ugpti.org/surcom/resources/

transportation-glossary.php?viewAll=1

Accessibility

The extent to which facilities, including transit 

vehicles, are barrier-free and can be used by 

people who have disabilities, including wheelchair 

users. Accessibility also includes how the transit 

service is accessed (e.g., access to schedules, 

dispatch, reservations, and other service 

information).

Complementary Paratransit Service

A transportation service required by the 

Americans with Disabilities Act (ADA) of 1990 

for those persons with disabilities and others not 

able to use fixed-route service. Generally, it must 

operate in the same areas and during the same 

148 National Council on Disability/National Indian Council on Aging
Assessing Service Needs

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 to overcome these barriers?

7. What guidelines do you suggest for removing transportation barriers on your reservation?

(AIDTAC 10-11)

hours as available fixed-route transportation. 

The fare is limited to twice the fixed-route fare. 

Complementary paratransit service may be 

operated by the fixed-route bus agency or by a 

completely separate agency. (Note: This is not 

the same as general paratransit service.)

Coordination

Coordination is 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. The Federal 

Transit Administration defines transportation 

coordination as

. . . a process through which representatives of different agencies and client 

groups work together to achieve any 

one or all of the following goals: more 

cost-effective service delivery; increased 

capacity to serve unmet needs; improved 

quality of service; and services which are 

more easily understood and accessed by 

riders. Coordination includes joint decision and actions of a group of agencies 

with formal arrangements to provide for 

the management of the resources of a 

distinct system.

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 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 149
destination. The driver does assist the passenger 

off and on the bus, as needed.

Demand-Response Service

Non-fixed-route service utilizing vans or buses 

with passengers boarding and alighting at 

pre-arranged times at any location within 

the system’s service area. Often referred to 

as Dial-a-Ride, this service allows individual 

passengers to request transportation from a 

specific location to another specific location 

at a particular time. This service may or 

may not mandate advanced reservations. It 

does not follow a particular route but travels 

throughout a designated service area or 

community, transporting passengers on a 

door-to-door basis, a curb-to-curb basis, or 

other specified service provision. The following 

types of operations fall under this category 

of transit services (as long as they are not on 

a scheduled fixed-route basis): many origins 

to many destinations; many origins to one 

destination; one origin to many destinations; 

and one origin to one destination. The vehicle 

typically may be dispatched to pick up several 

passengers at different pick-up points before 

taking them to their respective destinations 

and may even be interrupted en route to these 

destinations to pick up additional passengers. 

(See Paratransit.)

Deviated Fixed Route

Transportation service on a non-exclusive basis 

which operates along a public way on a standard 

route at generally fixed times, from which it may 

deviate in response to a demand for its service or 

to take a passenger to a destination, after which 

it returns to its standard route.

Door-to-Door Services

A form of paratransit service which includes 

passenger assistance between the vehicle 

and outside door of a person’s home or other 

destination. This is a higher level of service than 

curb-to-curb, yet not as specialized as doorthrough-door service.

Fixed Route

Transit services where vehicles run on regular, 

repetitive, pre-designated, pre-scheduled routes, 

with no deviation, stopping to pick up and deliver 

passengers at specific, identified locations. 

Each fixed-route trip serves the same origins 

and destinations. Typically, fixed-route service is 

characterized by printed schedules or timetables, 

designated bus stops where passengers board 

and alight, and the use of larger transit vehicles 

(although the size of the vehicles would be 

dependent on the number of passengers utilizing 

the system).

Guaranteed Ride Home

Program that encourages employees to carpool, 

use transit, bike, or walk to work by guaranteeing 

them a ride home in case they cannot take the 

same mode home (e.g., if they need to work late 

or if an emergency occurs).

Medicaid

Also known as Medical Assistance, this is 

a health care program for low-income and 

other “medically needy” persons. It is jointly 

funded by state and Federal Governments. The 

Medicaid program pays for transportation to 

non-emergency medical appointments if the 

recipient has no other means to travel to the 

appointment.

150 National Council on Disability/National Indian Council on Aging
Paratransit

Wheelchair-accessible, demand-response 

transportation service. It can also describe 

subscription bus services, shared-ride taxis, 

carpooling and vanpooling. It is much more 

flexible than conventional fixed-route transit 

but generally requires reservations or calling 

for a specific ride. General paratransit service 

is not required by law and is not subject to 

the restrictions imposed on complementary 

paratransit service. The transit agency may limit 

the service to certain people, or it may be made 

available to anyone.

Ride Sharing

A form of transportation other than public 

transit, in which more than one individual shares 

in the use of a vehicle, such as a van or a car, to 

make a trip.

Ridesharing Program

A ridesharing program facilitates the formation of 

carpools and vanpools, usually for work trips. A 

database is maintained for the ride times, origins, 

destinations, and driver/rider preferences of users 

and potential users. Those requesting to join an 

existing pool or looking for riders are matched by 

program staff with other appropriate persons. In 

rural areas, a rideshare program is often used to 

coordinate Medicaid or volunteer transportation.

Service Route

A hybrid type of transportation between fixedroute and demand-response service. Service 

routes are established between targeted 

neighborhoods and service areas riders want to 

reach. Like deviated fixed routes, service routes 

are characterized by flexibility and deviation from 

fixed-route intervals. However, while deviated 

fixed routes require advanced 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 dropoff anywhere along the route.

Technical Assistance

Non-financial support to help accomplish program 

goals, such as hands-on assistance provided to 

a transit system for the purposes of problem 

solving, planning, development, expansion, 

training, consulting, research, or evaluation.

User-Side Subsidy

A type of transit system whereby the passenger 

purchases tokens or vouchers at designated sale 

sites and presents the token to a service provider 

(e.g., taxi company) in exchange for a trip. The 

price of the token or pass is less than the cost of 

the trip. The token is then subsidized with federal, 

state, or local funds, and the taxi operator is 

reimbursed for the cost of the trip.

Vanpool

A ridesharing service to and from pre-arranged 

destinations in which a number of people travel 

together on a regular basis in a van which is 

designed to carry 7 to 15 passengers (including 

the driver). Vanpool service operates primarily 

from rural and outer suburban areas into urban 

area central business districts or suburban 

employment centers. Vanpools are typically 

developed under one of three models: they may 

be individually owned or leased (owner-operator), 

employer-operated, or publicly operated (thirdparty program). A publicly operated, third-party 

vanpool operation is usually one run by state or 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 151
local transit authorities, metropolitan planning 

organizations, local transportation management 

associations, or nonprofit transportation entities 

that are funded under state Departments of 

Transportation. Vanpools must be in compliance 

with public transit rules including the Americans 

with Disabilities Act, be open to the public, 

and have its availability be made known. The 

definition of vanpool does not include ridesharing 

coordination.

Model Approaches

Several tribes have tapped into a variety 

of state and federal funding sources to 

provide transportation systems that are fully 

accessible to people with disabilities and link 

passengers to employment centers and health 

and human services programs.

San Carlos Apache Tribe Reservation

Free or Donation-Based Transit for Older 

Adults and People with Disabilities

The San Carlos Apache Tribe’s (SCAT) Reservation 

in southeastern Arizona sits between the towns 

of Globe and Safford and in the counties of 

Graham, Pinal, and Gila and spans 1.8 million 

acres. The Apache Tribe maintains over 2,400 

miles of road ranging from state highway 70, BIA 

roads, county roads, and tribal roads.

Reservation residents use transit for shopping, 

commuting, medical purposes, and for family 

or other personal needs. Residents who are 

aging, have disabilities, are low-income, or TANF 

recipients use transit to attend social activities, 

appointments, and educational and workforce 

opportunities. For families, children can be 

transported to childcare facilities if accompanied 

by a responsible adult.

A past survey identified over 3,000 elders 

registered with the San Carlos Apache Tribe, and 

the transit program has dedicated transit staff 

who works in collaboration with the Older Adult 

Center. The Transit program allows older adults to 

ride based on a donation, and many older adults 

and people with disabilities ride for free.

Challenge: The San Carlos Apache tribe 

recognized a need within their community for 

reliable, affordable public transportation as 

essential to access family, medical, employment, 

and educational opportunities. Many of the 

older adults and residents with disabilities were 

dependent on friends and relatives to provide 

transportation for their basic needs, thus limiting 

their independence.

Resolution: Nnee Bich’o Nii (“Helping the 

People” in Apache) provides transportation 

services to the general public in the San Carlos 

Apache Reservation and neighboring cities of 

Globe and Safford. The mission of Nnee Bich’o 

Nii Transit Services is to transport all customers 

in a safe, professional, and courteous manner. 

By March 2021, Nnee Bich’o Nii Transit Services 

operated 17 buses on routes that run Monday 

through Friday with fares ranging from $1.00 to 

3.50 or on a donation basis for older adults and 

people with disabilities.

How it happened: The program began in 

2008 by acquiring three vans from the Arizona 

Department of Transportation (ADOT) under the 

Job Access Reverse Commute (JARC) Program. 

In 2012, SCAT attained two public transit buses 

under ADOT Rural Transit Programs and the 

Federal Transit Administration (FTA) Tribal Transit 

Programs (TTP). In 2019, SCAT received funds 

from the TTP to purchase additional vans and to 

replace older vans that had exceeded their useful 

life (San Carlos Apache Tribe 2021).

152 National Council on Disability/National Indian Council on Aging
Tips from the field

■ Utilize a variety of different funding 

opportunities from state and Federal 

sources

■ Respect tribal culture in structuring transit 

fees are structured

■ Stay true to the mission of the transit 

system

Oklahoma: Northeast Oklahoma 

Tribal Transit Consortium, Cherokee 

Nation and Pelivan Transit

Pelivan Transit was founded in 1985, and 10 tribes 

in northeastern Oklahoma joined a consortium 

with Pelivan Transit in 2008 and 2009. A rural 

public transportation program (5311) was 

integrated with two tribal transit programs (5311c). 

One grant created collaboration with the Cherokee 

Nation, and two other grants funded the Nine 

Tribes of the Northeast Oklahoma Consortium, 

consisting of the Eastern Shawnee, Miami, 

Modoc, Ottawa, Peoria, Quapaw, Seneca-Cayuga, 

Shawnee, and Wyandotte Tribes of Oklahoma.

Pelivan Transit provides tribal transit services 

on behalf of the Tribes to seven counties in 

northeastern Oklahoma. Some of the Pelivan 

Transit van fleet were purchased by tribes and 

leased to Pelivan (Pelivan Transit).

In 2019, Pelivan Transit won the “Rural 

Transportation System of the Year” from the 

Community Transportation Association of America 

(CTAA). This award is given to a system which 

provides service in an urban area with a population 

of less than 50,000, and the award is based on 

innovative and creative services in the community, 

that is responsive to its customers’ and community 

needs, among other criteria. (Community 

Transportation Association of America).

Challenge: Tribal nation members 

lacked access to safe, reliable, and low-cost 

transportation to access employment, health 

care, institutions of higher education, and other 

vital destinations.

Resolution: The Cherokee Nation Transit 

program began in 2008 with Ki Bois Area Transit 

System (KATS) to provide tribal employees and 

the general public with low-cost transportation 

to employment sources, also known as a “parkn-ride” commuter-route service, from Stilwell to 

Tahlequah. In 2009, Pelivan Transit came aboard to 

begin the Prior to Catoosa route, and since then, 

the program has expanded to include demandresponsive services and additional commuterroutes through Muskogee County Transit and 

Cimarron Public Transit (The Cherokee Nation).

Older adults who meet financial eligibility 

requirements receive free transportation to meal 

sites, doctor’s appointments, and multiple Indian 

Health Service clinics.

How it happened: Pelivan Transit of 

Oklahoma, owned and operated by Grand 

Gateway Economic Development Association 

and the Northeast Oklahoma Tribal Transit 

Consortium, partnered to secure funds for 

Federal grants. They used a variety of fundraising 

methods, such as service contracts with the 

State of Oklahoma and local municipalities, 

Department of Human Services Temporary 

Assistance for Needy Families, Medicaid nonemergency transportation, and Older Americans 

Act nutrition funding. Pelivan also increased 

revenue by selling advertising space and working 

with private for-profit businesses, as well as 

nonprofit foundations.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 153
The tribes take turns purchasing vehicles, 

then lease these vehicles to Pelivan Transit, 

which makes all vehicles in its fleet available 

for Tribal Transit services in its seven-county 

service territory. Some of the vehicles purchased 

specifically for Tribal Transit purposes were 

funded through grants from American Recovery 

and Reinvestment Act of 2009 (ARRA) stimulus 

dollars and Section 5311c (National Aging and 

Disability Transportation Center).

Pelivan operates a six city and surrounding 

areas demand response curb-to-curb transportation 

program and Tribal Transit Program through area 

dispatch centers in cities that are situated in 

northeastern counties of Craig, Delaware, Mayes, 

Nowata, Ottawa, northern Tulsa, and Rogers. 

The Pelivan transit system includes numerous 

employment routes interconnecting area cities, a 

trolley loop in Miami, education routes for TANF 

recipients, and various medical routes for area 

medical facilities in the region including Indian 

Health Services and area hospitals (Pelivan Transit).

Arroostook Bank of Mimac Indians 

and Community Transportation 

Association of America

On January 16, 2021, I travelled to 

Aroostook County, Maine, where CTAA 

is working with the Aroostook Band of 

Micmac Indians. Aroostook County is 

the largest county by area in the State 

of Maine, and the largest county east of 

the Mississippi. Micmac tribal members 

live in and around Presque Isle, Maine, as 

well as in scattered locations throughout 

Aroostook County. During my visit, I met 

with Tammy Gagnon, Executive Director 

of the Aroostook Regional Transportation 

System (ARTS) in Presque Isle to discuss 

Tips from the field

■ Coordinate with transit providers, service 

providers, and for-profit and nonprofit 

organizations in your community and apply 

jointly for state and federal agency grants 

to greatly expand services. 

■ Conduct ongoing public forums with tribal 

communities to understand community 

needs and improve services. 

■ Consider integrating transportation 

services with other programs the 

transportation system supports (e.g., 

Vocational Rehabilitation, employment and 

education programs, older adult services, 

and disability services).

strategies for serving Micmac tribal members. Although ARTS provides demand 

responsive transit service in many areas 

of Aroostook County, very few tribal members utilize it. We are working with the tribe 

and ARTS to develop additional services 

focused on the specialized needs of tribal 

members and that would attract more tribal 

ridership. The project emerged from an 

earlier Tribal Transit Program planning grant 

from FTA. Our work there is supported 

through the Tribal Passenger Transportation 

Technical Assistance Program (Rukowski).

Sitka Tribe of Alaska Tribal 

Transportation and Economic 

Development

The Sitka Tribe of Alaska, located on Baranof 

Island, started tourism transportation in 1994. 

154 National Council on Disability/National Indian Council on Aging
Tips from the field

■ Membership in a national transportation 

association expands access to resources 

including planning funds, technical 

assistance, and capacity building. 

■ Engage in coordination through on-theground, face-to-face collaborations to 

deepen understanding of community 

needs by local transit providers and 

association consultants. 

■ Coordination and development of close 

working relationships with a variety of 

partners uncovers solutions tribal transit 

systems can implement.

With the help of the Community Transportation 

Association of America in 1997, the Tribe formed 

a community committee that included tribal 

organizations, businesses, schools, nonprofits, 

city officials, and hospitals. They discussed 

opening a public transportation system, and 

in 1999 were awarded a U.S. Department of 

Agriculture (USDA) technical assistant grant 

that enabled the Tribe to hire a consultant (Tribal 

Transportation 2022).

The consultant helped the committee to 

identify existing transportation providers and 

the community’s needs, such as access to 

employment and medical care. The committee 

created a management plan and received funding 

from the Federal Transit Administration (FTA), 

Job Access and Reverse Commute (JARC), and 

USDA. Then the Sitka Tribe began operating a 

fixed-route service.

Twenty years later, the Center for Community, 

a nonprofit, provides oversight of the Sitka 

transportation system and has two main 

partners:

1. Sitka Tribe of Alaska operates RIDE (a fixedroute service)

2. Southeast Senior Services operates Care-AVan (ADA-complementary paratransit)

Additional programs have been implemented 

by the Sitka Tribe and its partners including

1. Free vouchers for fixed-route service to 

human service agencies

2. Providing grant funding for human service 

agencies to purchase vehicles, which are 

relied upon by Sitka transit agencies.

(Tribal Transportation 2022)

Tips from the field

■ Join a national transportation association, 

which can facility acquisition of a 

federal grant and subsequently pay for a 

transportation consultant.

■ A partnership between the tribe, 

community stakeholders, and a 

consultant can result in development of a 

management plan centered on economic 

development and the unique needs of a 

community.

■ An oversight nonprofit, and the tribe as a 

significant partner, enables further funding 

and expansion of transportation services.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 155
Transportation Rights of People with 

Disabilities

It can be confusing understanding how civil rights 

and disability laws apply to tribal transportation 

programs and federal funding sources. These 

explanations speak just to the Federal Transit 

Administration’s rules. State and private funding 

may have different rules.

Title VI of the Civil Rights Act of 1964, 42 

U.S.C. 2000d et seq. (“Title VI”)

Title VI prohibits discrimination on the basis 

of race, color, or national origin in any program 

or activity that receives Federal funds or other 

Federal financial assistance.

Americans with Disabilities Act (ADA)

The ADA mandates that people with disabilities 

cannot be denied access to public transportation 

facilities and services, and that those services 

must be comparable to those provided to the 

general public.

■ Vehicles operated by public and private 

transportation providers must be 

accessible

■ ADA paratransit services must be provided 

and complement the fixed-route services 

for people who cannot use those fixed-route 

services

Summary of the Applicability of Federal Transit Administration’s (FTAs) Civil 

Rights Programs and ADA Compliance for Indian Tribes Receiving FTA Funds

Program Funds Received

Direct recipient of 

only Tribal Transit 

Program (5311(c)) 

funds

Direct recipient of other 

FTA programs (Rural 

5311, Bus Program or 

Low-no, 5339)

Subrecipient of Rural 

Formula (5311) funds

Civil Rights / ADA Requirements

Title VI 

Program

Exempt from 

program submission

Required Required and must be 

submitted to state program 

for oversight

DBE 

Program

Required if awarding 

contracts exceeding 

$250,000 in FTA 

funds in a Federal 

Fiscal Year

Required if awarding 

contracts exceeding 

$250,000 in FTA funds 

in a Federal Fiscal Year

Required if awarding 

contracts exceeding 

$250,000 in FTA funds in 

a Federal Fiscal Year and 

must be submitted to state 

program for oversight

EEO 

Program

May be required 

depending on transitrelated staff size and 

other factors

May be required 

depending on transitrelated staff size and 

other factors

May be required depending 

on transit-related staff size 

and must be submitted to 

state program for oversight

ADA 

Compliance

Required (except 

Title I, which concerns 

employment 

discrimination)

Required Required

(Civil Rights / ADA 2021)

156 National Council on Disability/National Indian Council on Aging
■ ADA paratransit services must be 

comparable in terms of response times, 

fares, geographic service area, and hours/

days of service

■ May not restrict the number of trips an 

individual can make or prioritize service 

based on the rider’s trip purpose

■ Transit providers must assure system-wide 

accessibility of their demand-responsive 

services to people with disabilities

■ Regulations require only curb-to-curb 

service, but the grantee may provide a 

higher level of service (Small Urban and 

Rural Center on Mobility).

Title II of the ADA applies to state and local 

government entities and protects qualified 

people with disabilities from discrimination on 

the basis of disability in services, programs, and 

activities provided by state and local government 

entities. Tribes are NOT specifically exempt 

from the provision of Title II of the ADA, so the 

Department of Transportation’s ADA regulations 

DO apply to Indian tribes that receive FTA funding 

(Civil Rights / ADA 2021).

Disadvantaged Business Enterprise 

Program (DBE)

The Department of Transportation (DOT) ensures 

nondiscrimination in the award and administration 

of DOT-assisted contracts in the department’s 

highway, transit, and airport financial assistance 

programs. An Indian tribe receiving planning, 

capital and/or operating assistance exceeding 

$250,000 in Federal Transit Administration (FTA) 

funds in a Federal Fiscal Year (excluding vehicle 

purchases) must meet the FTAs DBE Program 

requirements (FTA Civil Rights / ADA 2021).

Equal Employment Opportunity 

Program (EEO)

The FTAs nondiscrimination statute and 

supplements employment protections found 

in Title VII of the Civil Rights Act of 1964 and 

the Americans with Disabilities Act of 1990. 

Title VII prohibits discrimination by recipients 

in employment opportunities based on race, 

color, religion, sex, and national origin. The 

ADA prohibits private employers, state and 

local governments, employment agencies, 

and labor unions from discriminating against 

qualified people with disabilities in job application 

procedures, hiring, firing, advancement, 

compensation, job training, and other terms, 

conditions, and privileges of employment (Civil 

Rights / ADA 2021).

Even though tribes are exempt from ADA’s 

requirements in employment, they must comply 

with the FTAs nondiscrimination statute if 

the tribal FTA recipient employs 100 or more 

transit-related employees and receive capital or 

operating assistance in excess of $1 million or 

planning assistance in excess of $250,000 in 

the previous Federal Fiscal Year. Indian tribes do 

have the authority to include Indian preference 

in employment on projects located on or near 

reservations and in any contracts or subcontracts 

under Tribal Transit Program grants (Civil Rights / 

ADA 2021).

Federal Transportation Funding

Indian County’s economy depends upon 

transportation infrastructure. Without safe 

and well-maintained roads, tribes are unable 

to provide essential services to their citizens. 

Despite the approximate 11 billion miles traveled 

on the Tribal Transportation Program system 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 157
annually, more than 60 percent of the system is 

unpaved (Indian Country Today 2021).

Coordinated Transportation

Coordinated transportation involves multiple 

entities working together to deliver one or more 

components of a transportation service so 

they can increase their capacity to provide trips. 

Coordination activities can include:

■ Sharing passenger trips and vehicles

■ Joint hiring of mobility manager(s)

■ Collaborating on plans, grant applications, 

vehicle purchasing, or maintenance

■ Federal fund braiding

■ Co-location of facilities, programs, or 

services (Transportation Trends 2018)

Federal transportation funds are allocated 

to the states based on total population, which 

includes American Indians and Alaska Natives. 

Developing transportation on tribal lands and 

Indian reservations involves considerable 

communications between the tribe and the state 

Department of Transportation (DOT), local city 

governments, and possibly other non-tribal transit 

providers (Tribal Transportation 2022).

The primary tribal transportation funder is the 

Federal Transit Administration’s (FTA) Tribal Transit 

Program (TTP). The TTP was established in 1996 

under Section 5311 of the Safe, Accountable, 

Flexible, Efficient Transportation Equity Act: A 

Legacy for Users (SAFETEA-LU) and in 2021 was 

reauthorized in the 2021 Bipartisan Infrastructure 

Law, or Public Law 117-58. Only Federally 

recognized tribes are eligible under the Tribal 

Transit Program and include:

1. Section 5311—Formula Grants for Rural 

Areas

2. Section 5311(c)(1)(B)—Tribal Transit Formula 

Grant

3. Section 5310—Enhanced Mobility of Seniors 

& People with Disabilities

4. Section 5307—Urbanized Area Formula 

grants

5. Section 5311(j)—Federally recognized tribes 

providing public transportation on tribal 

Lands

The Bipartisan Infrastructure Bill Allocations for Federally 

Recognized Tribes:

Bipartisan Infrastructure Bill

■ Tribal Transportation Program $ 2,966,800,000

■ Tribal Transportation Facility Bridges (Formula) $ 825,000,000

■ Nationally Significant Federal Lands and tribal Projects $ 275,000,000

■ Tribal Transportation Facility Bridge (Set-aside) $ 200,000,000

■ Tribal High Priority Projects Program $ 45,000,000

■ Public Transportation on Indian Reservations (Formula) $ 183,250,437

■ Public Transportation on Indian Reservations (Competitive) $ 45,812,610

Total $ 1,348,195,863,047

158 National Council on Disability/National Indian Council on Aging
Tribes not federally recognized remain eligible 

to apply to the state as subrecipients under 

their state’s apportionment for 5310, 5311, or 

5307 funding. Additional FTA funding is available 

through competitive grants and are announced 

through notices of funding opportunities (NOFO) 

at various times throughout the year (Tribal 

Transportation 2022).

Other Bipartisan Infrastructure 

Programs Federally Recognized 

Tribes Are Eligible For Bipartisan 

Infrastructure Law

Surface Transportation 

Block Grant

$72,000,000,000

Enhanced Mobility of 

Seniors and People with 

Disabilities

$2,193,105,343

All Stations Accessibility 

Program

$1,750,000,000

The Bipartisan Infrastructure Law includes 

many more transportation programs that tribes 

may direct funding for or through the state, such 

as ferry service for rural communities, bus and bus 

facilities, railway grants, railroad crossings, highway 

safety, and more (Building a Better America 2022).

The Bipartisan Infrastructure Bill funded Tribal 

Transit Program much more than the $11 billion 

requested in a 2021 letter by the Congress 

of American Indians representing 580 AI/AN 

organizations to the U.S. House of Representatives 

and U.S. Senate (Infrastructure Legislative proposal).

For comparison purposes, recent funding of 

the Tribal Transportation Program was as follows:

Other Sources of Tribal 

Transportation Funding

Older Americans Act

First passed in 1965, this federal law 

established a network of services and 

programs for people who are older that 

includes transportation and nutrition services 

and works with public and private agencies that 

serve the needs of people who are older. The 

law was reauthorized for FY 2020 through FY 

2024 and was renamed the Supporting Older 

Americans Act of 2020 (Administration for 

Community Living).

Social Security Act, Title XIX

Established the Medicaid program to provide 

medical and health related services. It describes 

the eligibility determination and transportation 

services offered by Medicaid programs for 

people with disabilities and older adults with low 

income, including non-emergency transportation 

to medical care. Medicaid is administered by 

each state and provides direct payment to 

suppliers of services.

Vocational Rehabilitation

The Code of Federal Regulations (C.F.R.) on 

American Indian Vocational Rehabilitation 

Services is similar, if not exactly the same, as 

the C.F.R. for state Vocational Rehabilitation 

programs. Transportation is defined as any 

travel and related expenses that are necessary 

to enable an applicant or eligible individual 

to participate in a Vocational Rehabilitation 

FY 2016 FY 2017 FY 2018 FY 2019

$ 465,000,000 $ 475,000,000 $ 485,000,000 $ 495,000,000

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 159
service, including expenses for training in 

the use of public transportation vehicles and 

systems. Transportation services are described 

in an individualized plan for employment and in 

connection with the provision of any Vocational 

Rehabilitation service.

Support is also given to entities, such as 

transportation authorities, designated by the Tribal 

Vocational Rehabilitation unit to provide services 

that benefits groups of people with disabilities 

(34 C.F.R. 2022).

Veterans Administration’s (VA) 

Veteran Transportation Program

VAs Veterans Transportation Program (VTP) 

offers Veterans many travel solutions to and 

from their VA health care facilities. This program 

offers three services at little or no costs to 

eligible Veterans.

1. Veteran Transportation Service 

Locations

VTS provides qualifying Veterans with free 

transportation services to and/or from 

participating VA medical centers (VAMCs) in 

a multi-passenger van. If qualifying Veterans 

do not have access to transportation options 

of their own, due to financial, medical, or 

other reasons travel is provided to VA medical 

facilities or authorized non-VA appointments. 

VTS also partners with service providers in local 

communities to serve Veterans’ transportation 

needs. Partners include:

■ Local and national nonprofit groups

■ Federal, state, and local transportation 

services

To find Veteran Transportation Services, click 

on your state to see a listing of VTS sites and 

Points of Contact in your area. https://www

.va.gov/healthbenefits/vtp/map.asp

2. Beneficiary Travel

The VA pays a reimbursement for round-trip 

mileage and other travel expenses to and 

from approved health care appointments. The 

application information can be completed orally 

or in writing and submitted to the Business 

office or other designee at the VA medical 

facility responsible for the medical care or 

services for which travel is required (Vocational 

Rehabilitation Services).

3. Highly Rural Transportation Grants

This funding is inactive as it expired in July 

2020. However, legislation was introduced in 

2021 to permanently extend the authority of the 

Department of Veterans Affairs to make grants 

for the transportation of highly rural veterans to 

health care facilities (H.R.3802).

Head Start Transportation

Head Start grants are awarded to public or private 

nonprofit organizations, including communitybased and faith-based organizations and forprofit agencies. Annual discretionary grants are 

available through the U.S. Department of Health 

and Human Services (DHHS) Office of Head 

Start. Grant opportunities are posted on the U.S. 

Administration for Children and Families (ACF) 

website and on http://grants.gov/.

The funding landscape is continually changing, 

so tribes and their partners are encouraged to 

research grant opportunities and learn about state 

160 National Council on Disability/National Indian Council on Aging
and local programs that pay for (or reimburse) 

transportation services for older adults and 

people with disabilities. Some agencies worth 

investigating are:

■ U.S. Department of Agriculture (USDA) Rural 

Development

■ Administration on Aging

■ Center for Independent Living

■ Medicaid

■ Administration for Native Americans

■ Others (see Resources in this chapter)

Resources

Organization What They Do Contact Info

Access Board The Access Board maintains 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

The Access Board

Office of Compliance and 

Enforcement

1331 F St NW, Suite 1000

Washington, DC 20004-1111

Email:

enforce@access-board.go

Fax: 202-272-0081

Phone: 202-272-0080

Toll free: 800-872-2253

Phone (TTY): 202-272-008

TTY Toll free: 800-993-2822

Online form: https://www

.access-board.g

Administration for 

Native Americans

Office of the 

Administration for 

Children & Families

The ANA provides financial assistance 

and capacity building, gathers and shares 

data, and advocates for improved policies 

within Health and Human Services and 

across the Federal Government

https://www.acf.hhs.gov/

ANA funding opportunities:

https://www.acf.hhs.gov/a

grants/funding-opportunities

Administration for 

Community Living

Administration on 

Aging

The ACL provides funds under the 

Older Americans Act to provide funds 

to meet the needs of American Indian 

elders, including nutrition, information, 

referrals, and transportation services

https://acl.gov/about-acl

administration-aging

Administration for Community 

Living

330 C St. S

Washington, DC 20201

Phone: 202-401-4634

To find elder care local 

resources: 800-677-1116

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 161
Organization What They Do Contact Info

American Public 

Transit Association

APTA

A nonprofit international membership 

association that provides advocacy, 

technical expertise, consulting services, 

workforce development programs, 

conferences, seminars, and hosts 135 

subject-matter working committees

APTA

1300 I Street NW

Suite 1200 East

Washington, DC 20005

Phone: 202-496-4800

Fax: 202-496-4324

https://www.apta.co

research-technical-resources/

public-transportation-links/

Center for Tribal 

Transportation

The Center for Tribal Transportation 

provides training, technical assistance, 

and mentoring to Alaska Native 

and Native American Transportation 

Departments

Center for Tribal Transportation

1191 E. White Mountain Blv

Gilbert, AZ, AZ 85296

Phone: 602-910-8367

Email:

becky@tribaltrans.co

Website:

https://tribaltrans.com

Facebook page:

https://www.facebook.co

thectt/

Community 

Transportation 

Association of 

America (CTAA)

Tribal Technical 

Assistance Program

CTAA has a huge website with a lot of 

information and resources

The program is designed to help 

Native American tribes enhance 

economic growth and development 

by improving transportation services

Technical assistance is limited to 

planning and may support transit 

service improvements and expansion, 

system start-up, facility development, 

development of marketing plans and 

materials, transportation coordination, 

training and other public transit 

problem-solving activities

Website:

https://ctaa.org

Tribal Passenger 

Transportation Technical 

Assistance Program:

https://ctaa.org/rural-tribalpassenger-transportationtechnical-assistance

CTAA -Tribal Technical 

Assistance Program

1341 G St. NW, 10th Floo

Washington, DC 20005

Tel: 1-800-891-0590

Fax: 202-737-9197

Charles Rutkowski x719 or 

Kelly Shawn x718

162 National Council on Disability/National Indian Council on Aging
Organization What They Do Contact Info

Easterseals, Inc Easterseals Project Action Consulting

Provides training on

■ ADA transportation requirements

■ Transit management training

■ Paratransit management certification 

and instruction

1101 Vermont Ave NW, Ste 510

Washington, D.C. 200

Toll-free: 844-227-3772

Office: 202-347-3066

TTY: 202-347-7385

Email:

espaconsulting@easterseals

.co

Website:

https://www.projectactio

.com

FTA Enhanced 

Mobility of Seniors & 

Individuals with 

Disabilities—

Section 5310

Enhanced Mobility of 

Seniors & Individuals with 

Disabilities—Section 5310

https://www.transit.dot.g

funding/grants/enhancedmobility-seniors-individualsdisabilities-section-5310

FTA Formula 

Grants for Rural 

Areas—5311

Formula Grants for Rural Areas—5311 

provides capital, planning, and operating 

assistance to states to support public 

transportation in rural areas with 

populations of less than 50,000, where 

many residents often rely on public 

transit to reach their destinations

The program also provides funding 

for state and national training and 

technical assistance through the Rural 

Transportation Assistance Program

https://www.transit.dot.g

rural-formula-grants-5311

FTA Grants 

Programs

Competitive and Formula Grants are 

listed

https://www.transit.dot.g

grants

FTA Notice 

of Funding 

Opportunity (NOFO)

■ Low or No 

Emission and 

Grants

Buses and 

Bus Facilities 

Competitive 

Programs

Low or No Emission and Grants for 

Buses and Bus Facilities Competitive 

Programs FY2022

https://www.transit.dot.g

notices-funding/low-or-noemission-and-grants-busesand-bus-facilities-competitiveprograms-fy2022

Website:

https://www.transit.dot.g

bus-program

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 163
Organization What They Do Contact Info

FTA Notice 

of Funding 

Opportunity (NOFO)

Tribal Transit 

Competitive 

program

Tribal Transit Competitive program 

FY2022, Notice of Funding Opportunity

https://www.transit.d

gov/notices-funding/

public-transportationindian-reservations-programfy-2022-notice-funding

FTA Public 

Transportation on 

Indian Reservations: 

Tribal Transit 

Competitive 

Program

On February 22, 2022, the FTA 

announced the availability of $8.75

million in Fiscal Year 2022 competitive 

grant funding to support transit services 

for American Indian and Alaska Native 

tribes in rural areas

https://www.transit.dot.g

tribal-transit

Webinar dated March 24, 

2022. Links on the above

website to the recording, 

presentation, and transcript

FTA Regional Tribal 

Offices and Liaisons

Region 1 (CT, MA, ME, NH, RI, VT)

Region 2 (NY, NJ)

Region 3 (DE, DC, MD, PA, VA, WV)

Region 4 (AL, FL, GA, KY, MS, NC, SC, 

TN, Puerto Rico, U.S. Virgin Island

Region 5 (IL, IN, MN, MI, OH, WI)

Region 6 (AR, LA, NM, OK, TX)

Region 7 (IA, KS, MO, NE)

Region 8 (CO, MT ND, SD, UT, WY)

Region 9 (AZ, CA, HI, NV, American 

Samoa, Guam, Mariana Islands)

Region 10 (AK, WA, ID, OR)

Addresses and phone 

numbers of the regional 

offices:

https://www.transit.d

gov/about/regional-offices/

regional-offices

FTAs Regional Tribal Liaisons

https://www.transit.dot.g

funding/grants/federal-transitadministrations-regionaltribal-liaisons

FTA Coordination 

Council on Access 

and Mobility 

(CCAM)

Transportation 

Coordination 

Guidance

And

Access and Mobility 

Federal Fund 

Braiding Guide

The CCAM promotes activities to 

coordinate the efforts of 80 federal 

agencies that fund transportation 

services for older adults, people with 

disabilities, and people of low income

Coordinated transportation involves 

multiple entities working together to 

deliver one or more components of 

transportation services to increase 

capacity and provide more trips.

https://www.transit.dot.g

coordinating-council-accessand-mobility

https://www.transit.dot.g

ccam/about/transportationcoordination

Guide from the Coordinating 

Council on Access and 

Mobility Federal Fund 

Braiding

https://www.transit.dot.g

sites/fta.dot.gov/files/2021-0

ccam-federal-fund-braidingguide-june-2020.pd

164 National Council on Disability/National Indian Council on Aging
Organization What They Do Contact Info

FTA Transit 

Workforce 

Development 

Technical Assistance 

Center (TWC)

The TWC supports public transit 

agencies’ workforce development needs 

for all modes of public transit across 

urban, tribal, and rural entities

Workforce Development 

Initiative

https://www.transit.dot.g

research-innovation/workforcedevelopment-initiative

FTA Transportation

Technical Assistance

Coordination 

Library (TACL)

The TACL provides a sustainable 

methodology and platform for access 

and findability of rural and tribal transit 

coordination resources across a diverse 

range of transportation technical 

assistance centers and the FTA

■ NADTC

■ N-CATT

■ NCMM

■ National RTAP

■ SUMC

■ TWC

TACL website:

https://transportation-tacl.org

National Aging and Disability 

Transportation Center 

(NADTC):

https://www.nadtc.or

coordination/

FTA Tribal Transit 

Program Formula 

Grants 5311(c)(1)(B)

The Public Transportation on Indian 

Reservations Program (Tribal Transit 

Program) for Fiscal Years (FY) 2022-

2026. Five percent of Rural Formula

(Section 5311) funding is available for 

the Public Transportation on Indian 

Reservations program. 20 percent of

the Public Transportation on Indian 

Reservations funds must be distributed 

on a competitive basis, while the 

remainder must be apportioned by 

formula. There is no local match required

under the formula program

https://www.transit.dot.g

funding/grants/tribal-transitformula-grants-5311c1b

FTA Urbanized Area 

Formula Grants 

5307

Urbanized Area Formula Grants 5307 https://www.transit.dot.g

funding/grants/urbanizedarea-formula-grants-5307

National Aging 

and Disability 

Transportation 

Center

(NADTC)

The NADTC promotes the availability 

and accessibility of transportation 

options that meet the needs of older 

adults and people with disabilities and 

caregivers

Website:

https://www.nadtc.or

Phone: 866-983-3222

Blog about Section 5307, 

5310, and 5311: Using Non-OT 

Federal Funds for Local Match:

https://www.nadtc.org/new

blog/section-5307-5310-and5311-using-non-dot-funds-forlocal-match/

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 165
Organization What They Do Contact Info

National Center 

for Applied Transit 

Technology 

(N-CATT)

The N-CATT provides small urban, rural, 

and tribal transit agencies with practical 

resources for replicable technological 

solutions and innovations

https://n-catt.org

Phone: 888-891-0590

National Center 

for Mobility 

Management 

(NCMM)

The NCMM operates in a consortium 

with The American Public Transportation 

Association, The Community 

Transportation Association of America, 

and Easterseals Inc

NCMM promotes customer-centered 

mobility strategies that advance good 

health, economic vitality, self-sufficiency, 

and community

https://nationalcenterformobility

management.org

National Rural 

Transit Assistance 

Program

National RTAP creates rural and tribal 

transit solutions through technical 

assistance, collaboration, and free 

training and transit industry materials

https://www.nationalrtap.or

Phone: 888-589-6821

National Transit 

Database (NTD) of 

the Federal Transit 

Administration

The NDT is used to apportion funding 

for transportation grants. Tribes enter

data at least annually into the database

https://www.transit.dot.gov/

Email: NTDhelp@dot.go

Phone: 877-561-7466 (IT 

Support only)

Business Hours:

8:00am–7:00pm ET, M–F

National Transit 

Institute (NTI)

The NTI is located at Rutgers University 

and provides training, education, and 

clearinghouse services to enhance 

skills and performance in public 

transportation

NTI

120 Albany Street

Tower Two, Suite 250

New Brunswick, NJ 08901-2163

https://www.ntionline.co

Shared-Use 

Mobility Center 

(SUMC)

The SUMC connects public and private 

sectors, pilots programs, and provides 

technical expertise so all people 

share in equitable, affordable, and 

environmentally sound mobility across 

the U.

https://sharedusemobility

center.org

Transportation 

Research Board 

(TRB)

The TRB provides leadership in 

transportation improvements and 

innovation based on research and 

evidence-based practices

Transportation Research 

Board (TRB)

2001 500 Fifth St., N

Washington, D.C. 200

Tel: 202-334-2934

Email: mytrb@nas.ed

Website:https://www

.nationalacademies.org/tr

transportation-research-board

166 National Council on Disability/National Indian Council on Aging
Organization What They Do Contact Info

U.S. Department of the Interior

Bureau of Indian Affairs

Regional Directors 

for Indian Services

BIAs Regional directors staff 

transportation specialists in the 12 

regions of the country

Alaska Regional 

Office

Bureau of Indian Affairs

Regional Director—Mr

Eugene R. Peltola J

3601 C Street Suite 1200

Anchorage, AK 99503-5947

Telephone: 907-271-4085

Toll Free: 800-645-8465

Fax: -907-271-1349

Website: https://www.bia.go

regional-offices/alaska

Eastern Regional 

Office

Bureau of Indian Affairs

545 Marriott Drive Suite 700

Nashville, TN 37214

Telephone: 615-564-6500

Telefax: 615-564-6701

Email: eastern.inquiries@bi

.go

Website: https://www.bia.go

regional-offices/eastern

Eastern Oklahoma 

Regional Office

Bureau of Indian Affairs

P.O. Box 80

Muskogee, OK 74402-8002

Physical Address:

Eastern Oklahoma Regional 

Office

Bureau of Indian Affairs

3100 W. Peak Boulevar

Muskogee, OK 74401

Telephone: 918-781-4600

Telefax: 918-781-4604

Website: https://www.bia.g

/regional-offices/eastern

-oklahoma

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 167
Organization What They Do Contact Info

Great Plains 

Regional Office

Bureau of Indian Affairs

115 4th Avenue Southeast 

Suite 400

Aberdeen, SD 57401

Hours: 7:45 A.M.–4:30 

CST

Phone: 605-226-7343

Fax: 605-226-7446

Website: https://www.bia.go

regional-offices/great-plains

Midwest Regional 

Office

Bureau of Indian Affairs

Department of the Interior

Norman Pointe II Building

5600 W. American Blvd.

Suite 500

Bloomington, MN 55437

Telephone: 612-725-4500

Telefax: 612-713-4401

Website: https://www.bia.go

regional-offices/midwest

Navajo Regional 

Office

Bureau of Indian Affairs

P.O. Box 10

Gallup, NM 87305

Physical Address:

Navajo Regional Office

Bureau of Indian Affairs

301 West Hill Street

Gallup, NM 87301

Telephone: 505-863-8314

Telefax: 505-863-8324

Website: https://www.bia.go

regional-offices/navajo

Northwest Regional 

Office

Northwest Regional Office

Bureau of Indian Affairs

911 Northeast 11th Avenue

Portland, Oregon 97232-4169

Telephone: 503-231-6702

Telefax: 503-231-2201

Website: https://www.bia.go

regional-offices/northwest

168 National Council on Disability/National Indian Council on Aging
Organization What They Do Contact Info

Pacific Regional 

Office

Bureau of Indian Affairs

Regional Director: Amy 

Dutschke

2800 Cottage Way

Sacramento, CA 95825

Telephone: 916-978-6000

Telefax: 916-978-6099

Website: https://www.bia.go

regional-offices/pacific

Rocky Mountain 

Regional Office

Bureau of Indian Affairs

2021 4th Avenue North

Billings, MT 59101

Telephone: 406-247-7943

Telefax: 406-247-7976

Website: https://www

bia.gov/regional-offices

rocky-mountain

Southern Plains 

Regional Office

Bureau of Indian Affairs

WCD Office Complex

P.O. Box 3

(Physical: 1 Mile North on 

Hwy 281)

Anadarko, OK 73005

Telephone: 405-247-6673

Telefax: 405-247-5611

Website: https://www

bia.gov/regional-offices

southern-plains

Southwest Regional 

Office

Bureau of Indian Affairs

1001 Indian School Road, NW

Albuquerque, NM 87104

Telephone: 505-563-3103

Telefax: 505-563-3101

Website: https://www.bia.go

regional-offices/southwest

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 169
Organization What They Do Contact Info

Western Regional 

Office

Bureau of Indian Affairs

2600 N. Central Avenue

4th Floor Mailroom

Phoenix, AZ 85001

Telephone: 602-379-6600

Telefax: 602-379-4139

Website: https://www.bia.go

regional-offices/western

Veterans 

Administration 

Veterans 

Transportation 

Service

The VTS provides qualifying Veterans 

with free transportation services to and/

or from participating VA medical centers 

(VAMCs) in a multi-passenger van

To find Veteran Transportation 

Services, click on your state to 

see a listing of VTS sites and 

Points of Contact in your area

https://www.va.go

healthbenefits/vtp/map.as

White House

Bipartisan 

Infrastructure Bill

A Guidebook to the Bipartisan 

Infrastructure Law for state, local, tribal, 

and territorial governments, and other 

partners

https://www.whitehouse.go

wp-content/uploads/2022/01/

BUILDING-A-BETTERAMERICA_FINAL.pd

170 National Council on Disability/National Indian Council on Aging
Chapter 9: Accessible Housing & Facilities

Where American Indians and Alaska 

Natives Live and Disability Rates

A 2016-18 survey by the U.S. Bureau of 

Labor Statistics found just a little over 

one quarter (28 percent) of American 

Indians and Alaska Natives (AI/ANs) resided in 

reservations or land trusts. The AI/ANs residing 

in AI/AN areas tend to be older, with 30 percent 

over the age of 55 (The U.S. Bureau of Labor 

Statistics 2019). Rates of disability increases 

with age, and in 2016, 50 percent of American 

Indian and Alaska Native elders aged 65 and older 

had one or more disabilities (Administration for 

Community Living). Disabilities rates vary by tribal 

community. For example, on the Navajo Nation, 

30 percent of Navajos between the ages of 21 

and 54 have a disability, but 70 percent over the 

age of 64 have a disability (The Native American 

Disability Law Center 2011).

If one calculates 30 percent of 9.6 million 

native people, there are an estimated 2,880,000 

AI/ANs with disabilities, and approximately 

864,000 live in reservations or land trusts. Even 

though many American Indians and Alaska 

Natives grow up outside their tribal homelands 

or leave to pursue educational and economic 

opportunities, tribal members often return to their 

reservations to visit family or for other reasons. 

Given the high rates of disabilities and health 

disparities in the AI/AN population, it is a priority 

that tribal buildings, businesses, and homes are 

accessible to both residents and visitors with 

disabilities.

Tribal Housing Challenges

To remain independent, many AI/ANs with 

disabilities living on tribal lands require their 

homes, work environment, and other tribal 

facilities be accessible to actively participate 

in family and tribal life. Unfortunately, the 

confluence of poor housing conditions, limited 

housing funds, and lack of awareness about 

universal design create barriers to providing 

accessible homes and public buildings on 

reservations or trust lands.

Barriers to Service 

■ Costs of building modifications

■ Limited program funding

■ Administrative backlog

■ Limited awareness of universal 

design 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 171
AI/AN Housing Problems in Tribal Areas 

2013–2015 Household Survey

Individual Housing Problems AI/AN Tribal Areas

Total U.S. Annual 

Housing Survey

Facilities Problems % Problem % Problem

■ Plumbing 5.6 % 1.3

■ Kitchen 6.6 % 1.7

■ Electrical 1.1 % 1.4

■ Heating 12.0 % 0.1

One Condition Problem* 8.1 % 0.8

More than one Condition Problem* 23 % 5 %

Overcrowded 15.9 % 2.2

Cost Burden 37.5 % 36.1

One or more physical problems 34 % 7 %

One or more identified housing problem of any kind 57 % 40 %

(Pindus 2017)

*Condition problems include structural deficiencies; leaks from outdoors; leaks from indoors (broken pipes or 

water heaters, backed up pluming or water from another unit); holes in the floors; holes or open cracks in the 

walls or ceiling; peeling paint or plaster one foot or larger (Pindus 2017).

AI/AN Housing Study

The U.S. Department of Housing and Urban 

Development conducted the largest study to 

date of AI/AN housing conditions and policies 

between 2011 and 2016. The study found a 

prevalence of housing problems (Pindus 2017).

These survey statistics show that more 

than half of existing tribal homes are in need 

of repair; additionally, the households of older 

adults who are frail or with disabilities need 

home modifications, such as safety features 

like grab bars in bathrooms, entrance ramps, 

and 36-inch wide doorways to accommodate 

a wheelchair. (Pindus 2017). A 2011 survey 

on the Navajo Nation found that none of its 

public offices were accessible to people with 

disabilities.

Accessibility Challenges on the 

Navajo Nation

In 2021, the Navajo Nation’s official enrollment 

grew to 399,494 according to the Navajo Office 

of Vital Records and Identification, making it the 

most populous tribal nation in the United States 

(Romero 2021). As such, it is estimated that well 

over 100,000 Navajo members have disabilities.

In 2011, 2,000 Navajos participated in surveys 

and focus groups to assess accessibility of 15 

Navajo Nation public offices in five communities. 

It was revealed that “Navajos with disabilities 

are more likely to miss needed assistance or lack 

benefits because they literally could not get in the 

door of the Navajo office that was responsible for 

serving them” (The Native American Disability 

Law Center 2011). The study also found that none 

172 National Council on Disability/National Indian Council on Aging
Facilities Accessibility Issues

Parking lots 1. Insufficient space for lowering a wheelchair ra

2. Pathways to the entrance of builds had obstructio

3. Curb cuts and crosswalks were not visibly marked or paint

Entrance doors and 

doors within offices

1.  Doorknobs are rounded and difficult to grasp, essentially making i

difficult to impossible for an individual to enter the building

Public telephones 1.  Available public telephones were not within reach of a perso

using a wheelchair

2.  Public telephones did not have text capability or volume control

for Deaf or Hard of Hearing people

Water Fountains 1.  Too high for wheelchair use

Restrooms 1.  Sinks, dispensers, disposal units, and mirrors were out of reach o

unusable for wheelchair users

Conference/waiting 

rooms

1.  Waiting rooms did not have enough room for people usin

wheelchairs

2.  Meeting places were inaccessible and unusable by persons wit

disabilities

Ramps and steps 1.  Ramps were too ste

2.  Surfaces were made with materials that would be slippery whe

wet

Elevators 1. Controls were not within reach of people using wheelchai

2.  Controls were not marked with Braille for people with visua

impairments

(The Native American Disability Law Center 2011)

of the 15 offices evaluated were fully accessible 

and that “ . . . lack of access to public buildings 

[is] one of the top five issues facing the Navajo 

community” (The Native American Disability Law 

Center 2011). The accessibility issues identified 

by the survey were widespread.

Navajo Nation Legislation Protecting 

the Rights of People with Disabilities

Despite the lack of accessibility of public 

offices, the Navajo Nation has a long history 

of enacting legislation to address the needs 

of people with disabilities. In 1979, an 

Affirmative Action Plan was enacted and spoke 

of employment for Navajos with disabilities 

and access in public, private, governmental 

buildings on the Navajo Reservation. 

Additionally, it established a 10-member Navajo 

Advisory Council on Disabilities. This law and 

subsequent laws did not include verbiage 

regarding compliance or legal remedies for 

noncompliance (Benally 2021).

In 2014, President Shelly issued an executive 

order that mandated tribal departments, chapter 

houses, enterprise buildings, and private 

businesses review their policies (Shebala 2014). 

The mandate required that policies state that 

people with disabilities be provided services, 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 173
reasonable accommodations, and accessibility to 

all facilities within the reservation (Benally 2021).

In 2018, The Navajo Nation Civil Rights for 

Individuals with Disabilities was enacted and gave 

people with disabilities the right to sue and receive 

legal and equitable outcomes if the individual 

felt discriminated against. The law is similar to 

the Americans with Disabilities Act of 1990 and 

protects against discrimination in the areas of 

housing, employment, training, social services, 

medical services, and participation in cultural, social, 

political, and economic activities (Benally 2021).

By the summer of 2021, some of the 

accessibility improvements recommended 

in the 2011 study had been made, such as 

adding signage, ramps, and concrete slabs 

for wheelchairs. However, accessibility 

improvements occurred gradually rather than 

systematically by creating and following a master 

plan. Lack of accountability and awareness about 

the needs and rights of Navajos with disabilities 

persists (Benally 2021).

The Basics of Universal Design

Universal Design is a method of designing 

environments, services, and products . . . that 

are usable by the highest number of people, 

including:

■ Small children and grandparents

■ People with temporary or permanent 

disabilities

7 Principles of Universal Design

1. Equitable use. The design is useful and marketable to people with diverse abilities

2. Flexibility in use. The design accommodates a wide range of individual preferences and 

abilities.

3. Simple and intuitive. Use of the design is easy to understand, regardless of the user’s 

experience, knowledge, language skills, or current concentration level.

4. Perceptible information. The design communicates necessary information effectively to 

the user regardless of ambient (environmental) conditions or the user’s sensory abilities.

5. Tolerance for error. The design minimizes hazards and negative, accidental, or unintended 

consequences.

6. Low physical effort. The design can be used efficiently, comfortably, and with a minimum 

of fatigue.

7. Size and space for approach and use. Appropriate size and space is provided for 

approach, reach, manipulation, and use regardless of the user’s body size, posture, or 

mobility.

(National Disability Authority)

174 National Council on Disability/National Indian Council on Aging
Examples of Universal Design Features

(Compliant with federal disability legislation requirements)

1. Front entrance. At least one no-step entrance with 36-inch door.

2. Lever Door Handles. Lever door handles on all doors and plumbing fixtures.

3. Electric Controls. Location of Electrical controls between 48 and 15 inches above the 

finished floor.

4. Accessible Route to the public right-of-way streets and sidewalks.

5. 36-Inch Doors. Minimum 32-inch-wide interior doors.

6. 36-Inch Hallways. Minimum 36-inch-wide hallways.

7. Bathrooms. All bathroom walls should be reinforced around the toilet and shower/tub for 

future installation of grab bars.

(Universal Housing Design)

■ People wishing to remain in their homes as 

they age

■ First responders, furniture and appliance 

movers

■ Visitors with mobility problems

■ And many others . . . (City of San Antonio. 

Universal Housing Design)

The goal of Universal Design is to remove 

barriers for all users and follows seven 

principles.

Even though the Americans with Disabilities 

Act categorically excludes tribes from the law, 

it is a best practice to apply the principles of 

Universal Design to the built environment.

Visitability

“Visitability” is a term that refers to singlefamily or owner-occupied housing designed in 

such a way that it can be lived in or visited by 

people who have trouble with steps or who use 

wheelchairs or walkers (Visitability).

Remodeling a home for accessibility costs 

$4,380 on average and typically will cost 

between $773 and $7,988 (Home Advisor). It is 

important to note that actual construction costs 

will vary by locality, and there will be savings 

Three Basic Requirements of a 

Visitable Home

1. one zero-step entrance

2. doors with 36 inches of clear passage 

space

3. one bathroom on the main floor you can 

get into in a wheelchair

(Visitability)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 175
Visitability Comparative Costs: New Construction Vs. Retrofitting

New Construction Retrofitting

One zero-step entrance on a concrete slab: $ 0

Five doors at $2 more per door than narrower doors: $10

One zero-step entrance over a basement: $250

TOTAL:

$10 (slab)

$260 (basement or crawl space)

Typical cost of widening 

one interior door: $700

Retrofit an entrance 

without steps: $3,300

(Visitability)

from the integration of universal design at the 

time of construction versus later modification.

Assessing 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 following eight questions were 

developed by the American Indian Disability 

Technical Assistance Center (AIDTAC) to assess 

accessibility barriers.

Use the questions in a talking circle or group 

format to bring together community members 

with diverse perspectives so you can understand 

Checklist to Evaluate Accessibility Barriers in Tribal Communities

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?

(American Indian Disability Technical Assistance Center)

176 National Council on Disability/National Indian Council on Aging
the spectrum of needs within your specific 

community.

The graphic from the Center of Universal 

Design in North Carolina State University 

below provides features and their benefits of 

the basic principles of universal design and a 

visitable home.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 177
Housing Legislation and Funding

More than two hundred years of disastrous 

federal policies have resulted in the alarming 

disintegration of reservation conditions and 

shocking impoverishment of Native people 

(Kunesh 2021). In 1975, Congress enacted 

The Indian Self-Determination and Education 

Assistance Act (ISDEAA), making selfdetermination the focus of future government 

action and reversing a 30-year effort by 

the Federal Government to sever treaty 

relationships with and obligations to Indian 

tribes (Kunesh 2021).

Housing was one of the first programs over 

which tribes assumed control under the ISDEAA 

(Kunesh 2021). In 1996, Congress passed The 

Native American Housing Assistance and SelfDetermination Act (NAHASDA), which is the 

dominant structure for federal housing assistance 

in Indian Country (Pindus 2017). See NAHASDA’s 

objectives, activities, and eligibility below.

In 2012, complementary legislation was 

enacted, The Helping Expedite and Advance 

Responsible Tribal Homeownership (HEARTH), 

which is designed to enhance tribal governance 

over tribal lands and promote the efficient 

leasing of those lands for housing and business 

purposes (Kunesh 2021). Under The HEARTH 

Act, tribes submit Tribal Leasing Regulations to 

the Secretary of the Interior, and upon approval 

are authorized to negotiate and enter into surface 

leases in the areas of:

■ Business

■ Agriculture

■ Wind and solar

■ Wind Energy Evaluation

■ Residential

■ Public, religious, educational, or recreation 

(U.S. Department of the Interior Indian 

Affairs, Hearth Act Leasing)

NAHASDA expired in 2013, but congress 

has continued annual funding, increasing 

it to $1 billion a year. As of this writing, 

the reauthorization bill was passed by the 

NAHASDA Objectives

1. Assist and promote safe, healthy, and affordable housing activities for occupancy by lowincome Indian families on Indian reservations and in other Indian areas.

2. Better access to private mortgage markets for Indian tribes and their members.

3. Coordinate housing activities between Indian tribes and their members with federal, 

state, and local activities.

4. Integrate infrastructure resources for Indian tribes with housing developments.

5. Promote private capital markets in Indian Country.

(Pindus 2017)

178 National Council on Disability/National Indian Council on Aging
NAHASDA Activities

1. Indian Housing Assistance: Includes modernization, operating assistance, rent, and 

utility subsidies for housing.

2. Housing Development: Includes property acquisition, new construction of affordable 

housing, reconstruction, rehabilitation, site improvements, development of utilities and 

utility services, demolition and other rehabilitation and construction activities.

3. Housing Services: Includes housing counseling, establishment and support of resident 

management organizations, energy auditing, and other services to assist owners, tenants, 

contractors, and other entities.

4. Housing Management Services: Includes work specifications, loan processing, 

inspections, tenant selection, management of tenant-based rental assistance, operation, 

and management, and maintenance of affordable housing projects/units.

5. Model Activities: Activities not explicitly stated within the goals of NAHASDA. Includes 

construction of community buildings, day care centers, job training centers, and 

maintenance storage buildings.

6. Administration and Planning: Can spend up to 20 percent on administration and 

planning.

(Pindus 2017)

NAHASDA Eligibility

1. Low-income Indian families whose income does not exceed 80 percent of the median 

income for the area.

2. Non-low-income Indian families whose income exceeds 80 percent of the area median 

and under certain circumstances specified by NAHASDA.

3. Non-Indian families whose housing needs cannot be met without assistance and that 

the grant recipient agrees the family’s presence is essential to the well-being of the Indian 

families living in the tribal area.

(Pindus 2017)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 179
U.S. Senate Committee on Indian Affairs and 

next will go to the full senate, then U.S. House 

of Representatives (Crouse 2022). The 2021 

bill would reauthorize NAHASDA through 2032 

and would provide an assistant secretary for 

the Office of Native American Programs within 

Housing and Urban Development rather than a 

deputy assistant secretary (National Low Income 

Housing Coalition 2021).

4 Programs Funded by NAHASDA

Indian Housing Block Grant (IHBG)

A formula-based grant program. Tribes use IHBG resources for direct housing investment and 

to leverage a larger pool of resources for housing improvement in their service areas (Pindus 

2017). Eligible activities are housing assistance, development, services, management, and 

model approaches (U.S. Housing and Urban Development, n.d.).

https://www.hud.gov/program_offices/public_indian_housing/ih/grants/ihbg

Section 184 Indian Home Loan Guarantee Program

Created in 1992 to increase Native access to homeownership by providing a guarantee to 

lenders on mortgage loans made to Native borrowers, including American Indian and Alaska 

Native families, Alaska Villages, tribes, or Tribally Designated Housing Entities. The loans can 

be used, both on and off native lands, for new construction, rehabilitation, purchase of an 

existing home, or refinance (U.S. Housing and Urban Development, n.d.).

https://www.hud.gov/program_offices/public_indian_housing/ih/homeownership/184

Indian Community Development Block Grant (ICDBG)

An annual competitive single-purpose grant for developing Indian and Alaska Native 

communities via housing rehabilitation, land acquisition, construction of community facilities 

and infrastructure, and economic development activities to benefit people with low and 

moderate incomes (U.S. Housing and Urban Development).

https://www.hud.gov/program_offices/public_indian_housing/ih/grants/icdbg

Title VI Loan Guarantee Program

Assists Indian Housing Block Grant recipients (borrowers) who want to finance eligible 

affordable housing activities but are unable to secure financing without the assistance of a 

federal guarantee (U.S. Housing and Urban Development, n.d.).

https://www.hud.gov/program_offices/public_indian_housing/ih/homeownership/titlevi

180 National Council on Disability/National Indian Council on Aging
BIAs Housing Improvement 

Program (HIP)

The Bureau of Indian Affairs established the 

Housing Improvement Program (HIP), an 

emergency housing assistance grant program for 

Indians who occupied substandard reservation 

homes acquired outside of the 1937 Housing Act 

programs (Pierson 2020).

Who Is Eligible for BIAs HIP

A program participant must be a member of a federally recognized tribe who lives in an 

approved tribal service area and has:

1. A household annual income that does not exceed 125 percent of poverty income guidelines

2. Substandard housing

3. Not received assistance after October 1, 1986, for repairs, renovation, replacement, 

housing, or down payment assistance

4. A home that was not acquired through a federal housing program, such as the Housing 

Act of 1937 or NAHASDA

5. No alternative housing assistance

6. Met ownership requirements or has a leasehold extending 25 years beyond the grant date

(Pierson 2020)

How do I apply BIAs HIP?

Individual tribal members apply by filing an application form, together with documentary 

evidence of membership, household income, and land tenure.

1. Applications are ranked by the HIP Servicing Office according to need

2. The Servicing Office determines what work should be done on the home and coordinates 

with the IHS with regard to funding for sanitation facilities

3. The Servicing Office selects contractors and manages the project

4. Funds are allocated based on information provided by tribes to their regional BIA offices 

based on a competitive process that takes into account the number of members who 

meet age, income, disability, and family-size criteria

(Pierson 2020)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 181
Section 202 Supportive Housing for the Elderly

Capital advances for new construction, rehabilitation, or acquisition of housing for occupancy 

for at least 40 years by older adults with very low income.

Who Is Eligible?

Private nonprofit organizations and nonprofit consumer cooperatives are the only eligible 

applicants under this program. Neither a public body nor an instrumentality of a public body 

is eligible to participate in the program.

Section 202 has rarely been used in Indian Country because tribal governments and TDHEs 

are not eligible applicants.

■ Several tribes in recent years have, however, teamed up with nonprofits to meet the needs 

of tribal elders. In order to access the program, a tribe must grant a long-term lease to a 

nonprofit developer/applicant.

How do I apply?

By the Housing and Economic Recovery Act of 2008, Congress delegated the authority to 

review applications for 202 funding to state housing finance agencies. For Indian Country 

projects, applications are made by a nonprofit entity, with the tribe’s support. For more 

information, visit the HUD website.

https://www.hud.gov/program_offices/housing/mfh/progdesc/eld202

(Pierson 2020)

The Bureau of Indian Affairs Housing 

Improvement Program provides grants to repair, 

renovate, replace, or provide housing for the 

neediest Indian families. HIP grants may be for 

interim improvements (up to $2,500), repairs 

and renovation (up to $35,000), or replacement 

of housing (sufficient for a “modest dwelling”) 

(Pierson 2020).

Bureau of Indian Affairs Low-Income 

Housing Tax Credit Program (LIHTC)

LIHTC is a dollar-for-dollar credit against the 

federal income tax liability of the owner 

(developer or investor) of a low-income housing 

development (Hopi Tribal Housing Authority). 

Under Section 42 of the IRS code, states are 

responsible for developing “Qualified Allocation 

Plans” and determining which projects receive 

awards. States administer the Low-Income 

Housing Tax Credit program. Tribes can raise 

the equity they need for building projects 

through the LIHTC program, which lowers the 

amount a tribe will need to contribute to the 

project. It does not need to repay this equity 

but must follow all regulations for the 15-year 

compliance program (Kapp 2015).

182 National Council on Disability/National Indian Council on Aging
Section 811 Supportive Housing for Persons with Disabilities

Section 811 of the National Affordable Housing Act of 1990 offers

(i) Interest-free capital advances and rental assistance to private nonprofit organizations to 

finance acquisition, construction, rehabilitation, and/or operation of rental housing that 

provides supportive services for persons with disabilities, and 

(ii) Project rental assistance, through state housing finance agencies, to sponsors who 

operate housing with community-based supportive services for people with disabilities.

Eligible housing includes group homes, independent living facilities, multifamily housing, 

condominium housing and cooperative housing.

Services must address the individual needs of people with disabilities, provide them with 

opportunities for optimal independent living and participation in normal daily activities, and 

facilitate access to the community at large and to suitable employment opportunities.

A capital advance does not have to be repaid as long as the housing remains available for 

people with very low income and disabilities for at least 40 years.

Under the rental assistance program, state housing finance agencies enter into rental 

assistance contracts with project sponsors, which may include tribes, which cover the 

difference between the HUD-approved operating costs of the project and the tenants’ 

contribution toward rent, usually 30 percent of adjusted income. The initial term of the 

project rental assistance contract is five years and can be renewed if funds are available.

The program is limited to very low-income households whose income does not exceed 50 

percent of the area median income.

■ For purposes of program eligibility, a “person with disabilities” is someone determined to have 

a physical, mental, or emotional impairment, which (1) is expected to be of long-continued and 

indefinite duration, (2) substantially impedes his or her ability to live independently, and (3) is of 

such a nature that such ability could be improved by more suitable housing conditions.

■ A person with a developmental disability, as defined in section 102(7) of the Developmental 

Disabilities Assistance and Bill of Rights Act, also qualifies if certain conditions are met. 

Capital advances may be made only to private nonprofit organizations, which could include 

nonprofits serving tribal communities.

Tribes may qualify as project sponsors for the purposes of applying for rental assistance 

provided they meet the project sponsor criteria established by the state housing finance 

agency. To learn more, visit the HUD website or your state housing finance agency.

https://www.hud.gov/program_offices/housing/mfh/progdesc/disab811

(Pierson 2020)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 183
Tribal HUD-Veterans Affairs Supportive Housing Program (HUD-VASH)

The VA and HUD established HUD-VASH to serve homeless veterans and their immediate 

families.

■ The VA provides case management and eligibility screening services

■ HUD allocates permanent housing subsidies from its “Housing Choice” program

The funding has been historically small, and the future of the Tribal HUD-VASH program is 

uncertain. To learn more, click on the link to the HUD-VASH Resource Guide for Permanent 

Housing and Clinical Care: https://files.hudexchange.info/resources/documents/HUD-VASH

ResourceGuide.pdf

(Pierson 2020)

Section 4 Funding—Capacity 

Building for Community 

Development and Affordable 

Housing

The Section 4 program was originally authorized 

under Section 4 of the HUD Demonstration Act 

of 1993 (Pub. L. 103-120, 107 Stat. 1148, 42 

U.S.C. 9816 note), as amended. The program 

enhances the capacity and ability of community 

development corporations (CDCs) and 

community housing development organizations 

(CHDOs) to carry out community development 

and affordable housing activities that benefit 

people with low income. (HUD).

Model Approaches

To meet the housing and accessibility needs of 

people with disabilities, partnerships between tribal 

councils, tribal programs, nonprofit organizations, 

and financial institutions are essential.

Several barriers to providing safe, sanitary, and 

affordable housing were described by the Tribally 

Designated Housing Entities in the largest study 

of tribal Housing, published in 2017.

Section 4 Eligible Applicants

The competition for Section 4 funding is limited to three types on nonprofit organizations:

1. Enterprise Community Partners, Inc.

2. Local Initiatives Support Corporation (LISC)

3. Habitat for Humanity International

(HUD)

184 National Council on Disability/National Indian Council on Aging
Section 4 Activities

1. Training, education, support, and advice to enhance the technical and administrative 

capabilities of CDCs and CHDOs, including:

a. Fair housing planning

b. Continuum-of-care homeless assistance, assessing area needs, and consulting broadly 

within the community

c. Cooperative planning

2. Loans, grants, development assistance, predevelopment assistance, and financial 

assistance to CDCs and CHDOs to carry out affordable housing for people with low and 

moderate incomes.

3. Other activities such as home investment partnerships, homeless programs, and housing 

opportunities for people with AIDS.

(HUD)

Barriers to Safe & Affordable Housing

(% of TDHEs who reported the barrier)

■ Developing Infrastructure (70%)

■ Availability of Labor (39%)

■ Lack of Funds (34%)

■ Acquiring or Assembling Land (30%)

■ Other Challenges such as risk of flooding, water shortages, aging of existing infrastructure 

(% not provided)

(Pindus 2017)

Blackfeet Housing Partners to 

Maximize Resources

Blackfeet Housing offers an emergency repair 

program for older adults, veterans, and people 

who have a disability. Funds are capped at $500 

for each participating household, but respondents 

say this amount is insufficient to make any 

substantial repairs. Blackfeet Housing is working 

with the U.S. Department of Agriculture and the 

Bureau of Indian Affairs’ Home Improvement 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 185
Program to pool resources. This partnership 

would allow for up to $20,000 to be spent on 

needed repairs (Pindus 2017).

Choctaw Nation Interagency 

Approach Reduces Service Gaps

The Choctaw Nation of Oklahoma developed 

a client-centered, interagency approach to 

service delivery that seeks to meet clients’ 

needs and reduce any service gaps. The 

collaboration includes several tribal departments 

and programs—housing, community health 

representatives, community-based home visitors, 

Temporary Assistance for Needy Families, 

transportation services, domestic violence, Food 

Distribution Program on Indian Reservations, 

adult protective services, and emergency 

services. This interagency cooperation includes 

the State of Oklahoma and municipalities located 

within the Choctaw Nation service area. This 

collaborative approach to service delivery helps 

to identify clients’ needs and reduce gaps in 

services (Pindus 2017).

The Saint Regis Mohawk Tribe 

and Section 4

The Saint Regis Mohawk Tribe, located near 

the Canadian border of New York, did not have 

a permanent source of housing for its 16,000 

members. The Saint Regis Mohawk Health 

Service officials underscored the need for 

supportive housing for veterans and older adults 

with disabilities on the reservation.

Resolution

The Sunrise Acres’ Complex included 41 

units that mainly housed older adults in an 

independent living environment with general 

support services. The Saint Regis Mohawk Health 

Service officials identified 29 tribe members who 

would specifically benefit from living in supportive 

housing.

Through a variety of funding sources, 

partnerships, and Section 4 funding, the tribe 

expanded its Sunrise Acres Complex to include 

Supportive Housing (SASH) with an additional 

18 homes. 12 homes were for older adults with 

disabilities and six homes for Native American 

veterans, including four homes designated for 

homeless veterans.

How it Happened

The Akwesasne Housing Authority’s (AHA) 

support services referral program hosts quarterly 

“Support to Elders Program (STEP)” meetings 

with program service providers to discuss the 

issues and current needs of the community.

“From those meetings, it came to light that 

there were seniors who needed more supportive 

services than what was currently offered. The 

Sunrise Acres’ 41 units mainly housed seniors in 

an independent living environment with general 

support services. They wanted to offer more 

options for supportive services for seniors as 

they age in place,” said Theresa Cole, special 

projects coordinator.

Section 4 funding set the process in motion 

and was an invaluable resource. The AHA 

was able to secure additional funding for their 

Supportive Housing Project through the New 

York State Homes and Community Renewal, 

Homeless Housing Assistance Program, and the 

Empire State Supportive Housing Initiative.

Recently, The AHA was awarded the Indian 

Housing Block Grant for 2020 to expand the 

Sunrise Acres complex, which will include an 

additional 20 independent living homes for older 

adults (Norwood).

186 National Council on Disability/National Indian Council on Aging
Confederated Tribes of Warm 

Springs Reservation and the U.S. 

Department of Agriculture (USDA) 

Rural Development Investments

For half a century, Marilyn Wagner raised her 

children, grandchildren, and great-grandchildren 

in a home on the Confederated Tribes of Warm 

Springs Reservation in Central Oregon. Due to her 

limited income, she could no longer keep up with 

the aging home’s growing maintenance needs.

■ An unusable sink and leaky kitchen plumbing

■ Dry rot in the bathroom floor

■ Collapsing woodstove chimney

■ Ceiling tile around the woodstove’s chimney 

sagged and leaked (2019)

Resolution

Through a partnership with the USDA, Warm 

Springs Tribal Credit Enterprise helped Ms. 

Wagner to complete an application for a home 

repair grant. USDA awarded her a $6,840 grant to 

replace plumbing, the bathroom floor, ceiling tile, 

an entry door, and a new chimney.

The repairs were completed just as Ms. 

Wagner made the final payment on her home 

mortgage. The Warm Springs Tribal Credit 

Enterprise and USDA Rural Development 

program are continuing to work together to 

help more tribal elders repair their homes on 

the Reservation (USDA Rural Development and 

Innovation Center 2019).

How it Happened

Wagner contacted the Warms Springs Tribal 

Credit Enterprise for a loan to cover the cost 

of the badly needed home repairs. She was 

delighted to learn she qualified for a grant from 

USDA Rural Development. These grants are 

available to older adults with very low income 

aged 62 or older to enable them to remove health 

and safety hazards from their homes because 

they cannot repay a repair loan (USDA Rural 

Development and Innovation Center 2019).

Tips from the field

■ Reach out to other organizations and tribal 

programs. Help is available, but you might 

have to find opportunities and build on them.

■ Develop a voice in the Tribal Council and 

relevant boards. Tribal governance can 

respond to the needs of people with 

disabilities if they know what you need.

Five FAQs to Ask about Accessible 

Homes and Workplaces

Frequently Asked Questions

1. Whom do I contact first for help in making 

my home or workplace 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 accessible-housing programs, and 

how do I apply?

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 187
1. Whom do I contact first for help 

in making my home or workplace 

accessible?

Start by contacting your tribal housing authority 

and/or Tribally Designated Housing Entity 

(TDHE). The TDHE is designated by the tribe to 

develop a five-year plan of action and an annual 

plan detailing the resources the tribe will use 

to meet the needs of its residents with low 

income.

The TDHE is the primary contact point for 

federal funds for housing and construction. 

The TDHE is given funds by either a formula 

or block grant. In 2020, nearly 600 tribes 

were eligible to participate in the NAHSADSA 

program, totaling $826 million (National 

Association of Housing and Redevelopment 

Officials).

The TDHE sets its housing and construction 

priorities, such as building ramps, constructing 

Independent Living Centers, or modifying 

existing buildings. The TDHE determines the 

plan, design, construction, and maintenance of 

affordable housing on Indian reservations and 

Native communities (U.S. Housing and Urban 

Development, Office of Policy Development and 

Research).

Many tribes have a partnership between 

the Vocational Rehabilitation Office, the tribal 

housing authority, and the tribal council to 

identify workplace modification needs for 

tribal members with disabilities who train 

for employment with tribal employers or 

employers outside of tribal communities. 

Independent Living Centers can also be an 

important source of information regarding 

housing and accessibility issues (see 

Independent Living chapter).

2. What legislation impacts housing for 

tribal members with disabilities, and 

how do I file a complaint if the laws are 

not being honored?

See an earlier section of this chapter on Housing 

Legislation and Funding. Other laws to be 

knowledgeable about are Section 504 of the 

Rehabilitation Act, the Architectural Barriers Act, 

the Americans with Disabilities Act (Titles I, II, 

and III), and the Fair Housing Act.

Section 504 of the Rehabilitation Act

Prohibits discrimination against a person with a 

disability by programs receiving Federal financial 

assistance. The law specifically references 

“Indian Tribe” as a program that has an 

agreement with the state to provide Vocational 

Rehabilitation services (Yazzie 2021).

The act 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

Requires 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” (U.S. Access 

Board, 2022).

Accessibility standards cover walks, ramps, 

curb ramps, entrances, elevators, and restrooms 

and are described in the Uniform Federal 

Accessibility Standards. Complaints may be filed 

with the Access Board (U.S. Access Board, 2022). 

See the Resources section of this chapter.

188 National Council on Disability/National Indian Council on Aging
Americans with Disabilities Act (ADA)

Tribes are categorically excluded from 

compliance with Title I of the ADA, which 

prohibits discrimination on the basis of disability 

in employment. Title II of the ADA prohibits 

discrimination based on disability in any public 

program, service, or activity by any “public 

entity” defined to include state, and local, but not 

tribal governments. The Eleventh Circuit Court of 

Appeals has held that tribes are subject to Title 

III, relating to public accommodations, but that 

only the United States, and not private parties, 

can bring suit to enforce the Act (Pierson 2020).

Fair Housing Act

Prohibits discrimination based on disability in 

the sale, rental, or financing of housing, and 

it requires certain architectural accessibility 

requirements in new multifamily housing. 

Complaints may be filed with HUD (Makoa 2002).

3. Where do I learn more about universal 

design?

A great place to start is the City of San Antonio 

Disability Access Office, which includes a web 

page on Universal Design, and publications 

such as an Accessibility Manual, Disability 

Etiquette Handbook, and Design Guidelines and 

Construction Standards that are compliant with TX 

law and the principles of Universal design. Their 

specific links are found in the Resources section 

of this chapter. https://www.sanantonio.gov/dao

4. Whom can I contact for technical 

assistance, training needs, networking 

opportunities, and information on 

housing?

Start with the National American Indian Housing 

Council (NAIHC). It is a national membership 

organization that promotes, supports, and 

upholds tribal housing agencies in their selfdetermined goal to provide culturally relevant and 

quality affordable housing for native people. More 

contact information is provided in the Resources 

section of this chapter.

https://naihc.net

There are regional Indian Housing Associations 

with offices in Alaska, Michigan, California, 

Washington, Oklahoma, Montana, Tennessee, 

New Mexico, and Washington DC. The names 

and contact information for each is listed in the 

Resources section of this chapter.

The Resources section of this chapter 

lists many more national public and private 

organizations with a variety of customers. 

Some serve American Indian and Alaska Native 

communities, and others serve rural communities 

and others serve every state.

5. What types of funding are available 

for tribal accessible-housing programs, 

and how do I apply?

The U.S. Department of Housing and Urban 

Development (HUD) and the Bureau of Indian 

Affairs (BIA) are the two federal agencies 

responsible for much of the funding for tribal 

housing, and a good place to begin. See the 

Legislative and Funding section of this chapter as 

well as the Resources section.

HUD offers assistance and loan programs 

specifically for Native American tribes, 

organizations, and (sometimes) individuals. 

HUD offers basic information on homebuying, 

fair housing, and housing counseling. The HUD 

Office of Native American Programs offers grant 

assistance through four main programs; two 

programs are focused on tribal communities 

and two are focused on individuals. The Code 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 189
Talk Website administered by HUD is also an 

excellent resource for program information. 

https://www.hud.gov/codetalk

The Bureau of Indian Affairs (BIA) is the oldest 

agency in the U.S. Department of the Interior. 

Established in 1824, it is responsible for the 

administration and management of 55 million 

surface acres and 57 million acres of subsurface 

mineral estates held in trust by the United States 

for American Indians, Indian tribes, and Alaska 

Natives. BIAs mission is “ . . . to enhance the 

quality of life, to promote economic opportunity, 

and to carry out the responsibility to protect and 

improve the trust assets of American Indians, 

Indian tribes, and Alaska Natives.”

Resources

Organization What Contact

1st Tribal 

Lending

First Tribal Lending assists 

Tribal members residing 

anywhere in the United 

States who may qualify for a 

Section 184 Home Loan

1st Tribal Lending

dba Mid America Mortgage, Inc. (NMLS

150009)

Nate Schmidt, Loan Officer (NMLS 400277)

5010 S. Broadband lane, Suite 11

Sioux Falls, SD 57108

Phone: 605-271-3531

Toll-free: 855-288-3123

Fax: 866-376-5903

Website:

www.hud184loans.c

Access Board The Access Board is an 

independent federal agency 

devoted to accessibility for 

people with disabilities

It develops and maintains 

accessibility criteria for the 

built environment, transit 

vehicles, telecommunications 

equipment, and electronic and 

information technology

U.S. Access Board

Office of Compliance and Enforcement

1331 F Street NW, Suite 1000

Washington, DC 20004-1111

Email: enforce@access-board.go

Fax: 202-272-0081

Phone (Voice): 202-272-0080

Toll free: 800-872-2253

Phone (TTY): 202-272-0082

Toll free: 800-993-2822

Online form:

https://www.access-board.gov/enforcemen

complaint.htm

190 National Council on Disability/National Indian Council on Aging
Organization What Contact

Association of 

Alaska Housing 

Authorities 

(AAHA)

A regional Indian housing 

authority located in Alaska

AAHA Statewide Office

Colleen Dushkin—Administrator

4300 Boniface Pkwy

Anchorage, AK 99504

Phone: 907-330-8398

Fax: 907-338-4904 fax

Email: cdushkin@aahaak.or

Website:

https://www.aahaak.or

Bureau of Indian 

Affairs

The BIA is responsible for 

the administration and 

management of 55 million 

surface acres and 57 million 

acres of subsurface minerals 

estates held in trust by the 

United States for American 

Indians, Indian tribes, and 

Alaska Natives

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

Website: https://www.bia.go

City of San 

Antonio 

Disability Access 

Office

The resources on the City of 

San Antonio Disability Access 

Office include:

■ Universal Design

■ Accessibility Manual

■ Disability Equity 

Handbook

■ Design Guidelines and 

Construction Standards 

(compliant with TX laws, 

but a good reference 

nonetheless)

Universal Design

https://www.sanantonio.gov/DA

ADADesign/UniversalHousingDesign

Accessibility Manual

https://www.sanantonio.gov/DA

Publications-and-Maps/AccessibilityManual

Disability Equity Handbook

https://www.sanantonio.gov/DA

Publications-and-Maps/DisabilityEtiquette-Handbook

Design Guidelines and Construction 

Standards (compliant with TX statutes and 

Universal Design)

https://www.sanantonio.gov/Portals/

Files/NHSD/OurSA/2020%20Guidelines%20

for%20New%20Construction

pdf?ver=2019-12-19-135230-023

Department 

of Housing 

and Urban 

Development

(to file a 

complaint)

To file a complaint under 

the Fair Housing and Equal 

Opportunity Housing and 

Urban Development

Website:

https://www.hud.gov/i_want_to/file_a_fai

housing_discrimination_complaint

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 191
Organization What Contact

To file a complaint, you can 

call, complete a form and 

mail it, or write a letter that 

includes:

■ Your name, address, and 

the person your complaint 

is about

■ The address of the house 

or apartment you were 

trying to rent or buy

■ The date the incident 

occurred

■ A short description of 

what happened

Toll-free: 1-800-669-9777

Print a form and mail it to:

https://www.hud.gov/program_office

administration/hudclips/forms/hud9

Office of Fair Housing and Equal 

Opportunity

Department of Housing and Urban 

Development

Room 5204

451 Seventh St. S

Washington, DC 20410-2000

Great Lakes 

Regional 

Housing 

Association

A regional housing authority 

located in MI and serving the 

Great Lakes area

Great Lakes Regional Housing Association

Kevin Fitzgibbons

3095 S. Towering Pines Stree

Brimley, MI 49715

Phone: 847-894-1113

Email: kf438@yahoo.co

Website:

https://www.gliha.org/welco

Home 

Innovation 

Research Labs

Home Innovation Research 

Labs is an independent 

subsidiary of the National 

Association of Home Builders

It publishes hundreds of 

technical assistance resources 

including reports, building 

standards, how-to brochures, 

research, books, and a 

monthly blog

Home Innovation Research Labs

400 Prince George’s Blvd

Upper Marlboro, MD 20774

Phone: 301-249-4000

Tollfree: 800-638-8556

Fax: 301-430-6180

Website: https://www.homeinnovation.co

Housing 

Assistance 

Council (HAC)

HAC is a national nonprofit 

that supports affordable 

housing throughout rural 

America, particularly the 

poorest of the poor. Provides

below-market financing 

for affordable housing and 

community development, 

technical assistance, training, 

research and information, and 

policy information

Housing Assistance Council

National Office

1025 Vermont Avenue NW, Suite 606

Washington, DC 20005

Phone: 202-842-8600

Fax: 202-347-3441

Email:hac@ruralhome.or

192 National Council on Disability/National Indian Council on Aging
Organization What Contact

HUD Exchange Information about Section 4: 

Capacity Building for 

Community Development and 

Affordable Housing

Information on HUD-VASH to 

provide permanent housing 

and clinical care to homeless 

Veterans

https://www.hudexchange.info/program

section-4-capacity-building/

Enterprise Community Partners, Inc.

70 Corporate Center

11000 Broken Land Pkwy, Ste 700

Columbia, MD 21044

Local Initiatives Support Corporation (LISC)

501 Seventh Avenue, 7th Floor

New York, NY 10018

Habitat for Humanity International

121 Habitat Street

Americus, GA 31709

HUD-VASH Resource Guide for Permanent 

Housing and Clinical Care:

https://www.hudexchange.inf

resource/2011/hud-vash-resource-guide-forpermanent-housing-and-clinical-care/

National 

American Indian 

Housing Council

(NAIHC)

A national membership 

organization promoting and 

supporting tribal housing 

agencies

NAIHC

900 2nd Street NE, Suite 305

Washington, DC 20002

Phone: 202-789-1754

Toll-free: 800-284-9165

Fax: 202-789-1758

https://naihc.net

2020 Indian Housing Development 

Handbook:

https://naihc.net/wp-content/uploads/2019/12

Indian-Housing-Development-Handbook2020-Single-Page.pd

National Low 

Income Housing 

Coalition 

(NLIHC)

NLIHC educates, organizes, 

and advocates to preserve 

existing federally assisted 

homes and housing 

resources, expand the supply 

of low-income housing, and 

establish housing stability as 

the primary purpose of federal 

low-income housing policy

National Low Income Housing Coalition

1000 Vermont Ave NW, Ste 500

Washington, DC 20005

Phone: 202-662-1530

Fax: 202-393-1973

info@nlihc.or

Website: www.nlihc.o

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 193
Organization What Contact

NeighborWorks 

America

NeighborWorks America 

works through public and 

private partnerships and is 

a network of organizations 

representing all 50 states to 

support organizations that 

provide communities with 

affordable housing, financial 

counseling, training, and 

more

NeighborWorks America

999 N. Capitol Street NE, Ste 90

Washington, DC, 20002

Phone: 202-760-4000

Fax: 202-376-2600

Email general questions to: editor@nw.or

Email training questions to training@nw.or

or call 800 438-5547

Website: https://www.neighborworks.or

Home.asp

NevadaCalifornia 

Indian Housing 

Association

A regional Indian housing 

authority serving Nevada and 

California

NV-CA Indian Housing Assoc

Phil Bush—Chair

Modoc-Lassen IHA

401 Peninsula Drive, Suite 6

Lake Almanor, CA 96137

Phone: 530-596-4127

Fax: 530-596-4137

Email: modoclasseniha@thegrid.ne

Website: http://www.nevcal.or

Northwest 

Indian Housing 

Association

A regional Indian housing 

authority located in 

Washington state

NW Indian Housing Association

Laurie Ann Cloud—Chairwoman

Nez Perce

PO Box 603

Anacortes, WA 98221

PH: 208-843-2229

E: lauriec@nezperce.or

Website: http://www.nwiha.or

Rebuilding 

Together

Rebuilding Together makes 

essential repairs to help our 

neighbors stay in their homes

Local affiliates are rooted in 

the community and work with 

local leaders and community 

residents. They also help

communities recover from 

natural disasters

Rebuilding Together

National Headquarters

999 N. Capitol St. NE, Ste 3

Washington, DC 20002

Phone: 202-518-3100

General Inquiries: communications@

rebuildingtogether.or

To find a local affiliate: https://

rebuildingtogether.org

find-your-local-affiliate

194 National Council on Disability/National Indian Council on Aging
Organization What Contact

Rural Housing 

Service National 

Office

U.S. Departmen

of Agriculture

USDAs Rural Housing Service 

offers a variety of programs 

to build or improve housing 

and essential community 

facilities in rural areas. They

offer loans, grants, and loan 

guarantees for single- and 

multifamily housing, childcare 

centers, fire and police 

stations, hospitals, libraries, 

nursing homes, schools, 

first responder vehicles and 

equipment, housing for farm 

laborers, and much more

USDAs Rural Housing 

Service provides technical 

assistance loans and grants 

in partnership with nonprofit 

organizations, Indian tribes, 

state and Federal Government 

agencies, and local 

communities

USDAs Rural Housing Service

National Office

1400 Independence Ave SW, Rm 5014, 

STOP 0701

Washington, DC 20250-0701

Phone: 202-692-0268;

Customer Inquiries:

800-414-1226

USDA’s Rural Housing Service

https://www.rd.usda.gov/about-rd/agenci

rural-housing-service

To locate your field office:

https://www.farmers.go

service-center-locator

Southern Plains 

Indian Housing 

Association

A regional Indian housing 

authority located in 

Oklahoma

Southern Plains Indian Housing Association

Renee Sweet—President

Chickasaw Nation Division of Housing

PO Box 788

Ada, OK 74821

Phone: 580-421-8880 ext. 4881

Email: renne.sweet@chickasaw.n

Website: https://spiha.org/default.as

Southwest Tribal 

Housing Alliance

A regional Indian housing 

authority located in New 

Mexico

Southwest Tribal Housing Alliance

Floyd Tortalita—President

Pueblo of Acoma Housing Authority

PO Box 620

Acoma, NM 87034

Phone: 505-552-7528

Email: ftortalita@acomahousing.or

Website:

https://www.swtha.or

(continued)

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 195
Organization What Contact

Sustainable 

Native 

Communities 

Collaborative 

(SNCC)

SNCC provides culturally and 

environmentally sustainable 

development with American 

Indian, First Nations, and 

indigenous communities 

worldwide. Services include

planning, architectural design, 

technical assistance, and 

research

Sustainable Native Communities 

Collaborative

www.sustainablenativecommunities.o

Reach out to SNCC at: https://www

.sustainablenativecommunities.org/conta

A “Healthy Housing Roadmap” for housing 

development:

http://roadmap

sustainablenativecommunities.org

United Native 

American 

Housing 

Association

A regional Indian housing 

authority located in Montana

United Native American Housing 

Association

Jason Adams—Chairman

Salish & Kootenai Housing Authority

PO Box 38

Pablo, MT 59855

Phone: 406-675-4491

Website: http://unaha.org

United Southern 

and Eastern 

Tribes

A regional Indian housing 

authority located in Tennessee

United Southern and Eastern Tribes

Kirk Francis, SR—President

Penobscot Indian Nation

711 Stewarts Ferry Pike

Nashville, TN 37214

Phone: 615-872-7900

Fax: 615-872-7417

Website:

https://www.usetinc.or

U.S. Department 

of Housing 

and Urban 

Development

HUD offers assistance and 

loan programs specifically 

for Native American 

tribes, organizations, and 

(sometimes) individuals. HUD

offers basic information on 

homebuying, fair housing, 

and housing counseling

The HUD Office of Native 

American Programs offers 

grant assistance through 

four main programs; two 

programs are focused on 

tribal communities and two 

are focused on individuals

HUD Office of Public and Indian Housing 

(PIH);

HUD Office of Native American Programs 

(ONAP)

451 7th Street SW

Washington, DC 20410

Phone: 202-708-1112

Fax: 202-708-1455

The Code Talk website administered by HUD 

is also an excellent resource for program 

information

https://www.hud.gov/codeta

196 National Council on Disability/National Indian Council on Aging
Organization What Contact

U.S. Department 

of Housing 

and Urban 

Development

Indian Housing 

Block Grant 

(IHBG)

A formula-based grant 

program. Tribes use IHBG

resources for housing 

assistance, development, 

services, management, and 

funding model approaches

https://www.hud.gov/program_office

public_indian_housing/ih/grants/ihbg

U.S. Department 

of Housing 

and Urban 

Development

Indian 

Community 

Development 

Block Grant 

(ICDBG)

Indian Community 

Development Block Grant 

is an annual competitive 

single-purpose grant for 

developing Indian and Alaska 

Native communities via 

housing rehabilitation, land 

acquisition, construction of 

community facilities and 

infrastructure, and economic 

development activities to 

benefit people with low and 

moderate incomes

https://www.hud.gov/program_office

public_indian_housing/ih/grants/icdbg

U. S. 

Department 

of Housing 

and Urban 

Development

Low Income 

Housing Tax 

Credit (LIHTC)

LIHTC issues approximately 

$8 billion annually in tax 

credits for the acquisition, 

rehabilitation, or new 

construction of rental housing 

targeted to lower-income 

households

https://www.huduser.gov/portal/dataset

lihtc.htm

List of LIHTC allocating agencies

https://lihtc.huduser.gov/agency_list.

U.S. Department 

of Housing 

and Urban 

Development

Section 184 

Indian Home 

Loan Guarantee 

Program

Section 184 Indian Home Loan 

Guarantee Program

increases AI/ANs access to 

homeownership by providing 

a guarantee to lenders on 

mortgage loans

Loans can be used, both on 

and off Native lands, for new 

construction, rehabilitation, 

purchase of an existing home, 

or refinance

https://www.hud.gov/progra

offices/public_indian_housing/ih/

homeownership/184

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 197
Organization What Contact

U.S. Department 

of Housing 

and Urban 

Development

Section 202 

Supportive 

Housing for the 

Elderly Program

HUDs Section 202 provides 

interest-free capital advances 

to private, nonprofit sponsors 

to finance the development of 

supportive housing for older 

adults. The capital advance

does not have to be repaid 

as long as the project serves 

older adults with very low 

income for 40 years

https://www.hud.gov/program_office

housing/mfh/progdesc/eld202

U.S. Department 

of Housing 

and Urban 

Development

Section 811 

Supportive 

Housing for 

Persons with 

Disabilities

Section 811 Supportive 

Housing for Persons with 

Disabilities provides interestfree capital advances and 

operating subsidies to 

nonprofit developers of 

affordable housing for people 

with disabilities; and provides 

project rental assistance to 

state housing agencies

https://www.hud.gov/program_office

housing/mfh/progdesc/disab811

Section 811’s Portal

https://www.hud.gov/program_office

housing/mfh/grants/section811ptl

U.S. Department 

of Housing 

and Urban 

Development

Title VI Loan 

Guarantee 

Program

Title VI Loan Guarantee 

Program

Assists Indian Housing Block 

Grant recipients (borrowers) 

who want to finance 

eligible affordable housing 

activities but are unable to 

secure financing without 

the assistance of a federal 

guarantee

https://www.hud.gov/program_office

public_indian_housing/ih/homeownership/

titlevi

U.S. Department 

of Interior. 

Indian Affairs.

Housing 

Improvement 

Program (HIP)

HIP is a home repair, 

renovation, replacement, and 

new housing grant program

https://www.bia.gov/bia/ois/dh

housing-improvement-program

Visitability

The website is 

hosted by the 

National Council 

on Independent 

Living

Provides resources and 

information about visitability

https://visitability.org

To contact visitability: https://visitability.org

contact/

198 National Council on Disability/National Indian Council on Aging
Chapter 10: Key Elements of Effective Programs

“Often, people think we’re a culture that needs rescuing, 

and we’re not. We’re a people who are very resilient, very 

strong, and we want to be partners in creating systems 

that are effective and matter. We don’t want to be served; 

we want to be part of building service structures.”

Dr. Crystal Hernandez, Advocate and parent of 

a child with a disability

A 2021 panel of experts who work in 

programs that support AIAN people with 

disabilities described the elements of 

effective AIAN programs listed below.

Responsiveness to the Needs of the 

Consumer

Successful programs require staff to know all 

their consumers well. The staff move beyond a 

consumer’s needs to build authentic personal 

relationships with consumers. Staff try to 

understand the realities experienced by tribal 

members with disabilities. In turn, the staff can 

influence program structures and tailor services 

around the unique needs of each consumer 

and each tribal community. These are personcentered programs.

Innovation in Removing Barriers

“Necessity is the mother of invention” describes 

how tribal programs came to innovate. They 

partner with other entities, advocates, people 

with disabilities, and their families. They are 

responsive and collectively remove barriers, 

realign, and expand programs to seamlessly 

serve the community.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 199
Effective Collaboration

A program’s capacity to effectively collaborate 

between agencies, programs, and funding 

sources means establishing trust, building 

relationships, educating, learning, and listening 

to all partners in service of tribal members with 

disabilities.

Advocacy Strength

To be an advocate is to believe in the rights of 

people with disabilities and their inclusion in 

all aspects of a barrier-free society. Advocates 

work to change laws, politics, programs, and 

attitudes through training, testimony, and action. 

People with disabilities are self-advocates and 

essential voices in understanding how to serve 

their interests. Advocacy is necessity for tribal 

members with disabilities who don’t know how 

or can’t advocate for themselves.

Support from Tribal Leadership

Leaders of tribal programs serving AI/AN people 

with disabilities credit their success to support 

from tribal governmental leaders. The ways 

tribal governments have supported their tribal 

members with disabilities include enacting 

disability rights’ laws, policies, and procedures, 

issuing funds, establishing disability councils 

or taskforces, and continuously educating the 

community about inclusion and the rights of 

people with disabilities.

Conclusion

Despite substantial barriers, tribal members with 

disabilities can enjoy restored health, spiritual 

well-being, and inclusion in all aspects of society. 

It requires hopeful and persistent leadership to 

forge a collaborative and integrated system of 

culturally relevant, person-centered programs, 

policies, procedures, educational initiatives, and 

more. By implementing the key elements of 

promising programs and the leadership model 

described by Freeman, strength and wholeness 

can be the lived experience of the entire tribal 

community.

200 National Council on Disability/National Indian Council on Aging
Chapter 11: Advocating Change

“We need more inclusion of people with disabilities in the decision-making process in all the 

programs that affect our lives, housing, health care, Vocational Rehabilitation.”

Joseph Ray

Introduction

While the word “advocacy” may not 

be used in many Native cultures, 

it has deep roots within Native 

communities as kinship care. The structure 

of kinship care is the long and proud tradition 

of taking care of your relatives, elders, and 

community and of creating a community support 

system (Generations United & National Indian 

Child Welfare Association, 2020).

Self-advocacy is viewed as a civil rights 

movement, so every person has control over 

their own life, and people with disabilities are 

treated the same as everyone else.

Self-advocacy 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

(Minnesota Department of Administration)

Self-advocacy is a lifelong personal pursuit 

of control over one’s own circumstances. 

It is the act of advocating for what one 

wants, for how one desires to live, for how 

one wants to be treated, within one’s family, community, and services, and it does 

not end with one concession or victory.

Bonnie Shoultz, 2002

There are three commonly recognized types 

of advocacy:

■ Self-advocacy is an individual’s ability to 

effectively communicate, convey, negotiate, 

or assert his or her own interests, desires, 

needs, and rights.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 201
■ Individual advocacy is when a person speaks 

out and advocates for a vulnerable person, 

such as a friend, family member, neighbor, 

or coworker with a disability. There are also 

paid advocates who are employed by a 

support agency.

■ Systems change advocacy focuses on 

changing policies, laws, or rules that impact 

how others live their lives (West Virginia 

University Center for Excellence in Disabilities).

Allyship and Advocacy

An ally is someone who is associated with 

another person or marginalized group for a 

common cause or purpose. According to the 

Centers for Disease Control and Prevention, a 

person can become a disability A.L.L.Y. in their 

community and promote inclusion for all by 

implementing the A.L.L.Y. acronym.

A – Acknowledge and respect individual 

experiences and abilities

L – Learn about different disability types

L – Leverage your influence to promote 

accessibility and inclusion

Y – Yield the floor to people with disabilities to 

help identify and eliminate barriers

(Centers for Disease Control 

and Prevention)

A common refrain from people with 

disabilities is, “Nothing about me without 

me.” As an ally and advocate, it’s important to 

remember that all people need support, advice, 

and encouragement in their daily lives. Advocates 

have an ethical obligation to represent the desires 

and needs of the person they represent. Your 

role is to support the person to exercise his or 

her rights by assisting to voice concerns, access 

information, resolve issues, identify available 

support options, and to share with the person the 

joy of community.

Self-Advocacy

Kindred care is a feature of nearly all American 

Indian and Alaska Native cultures. Kindred care 

means tribal members take care of relatives, elders, 

and the community. The extended family structures 

and supportive community systems empower 

kindred care. Advocacy is a form of kindred care. 

When you advocate to bring about change to help 

yourself or others, you are demonstrating a form of 

kindred care (Generations United 2020).

Even in the 21st century, the need for 

advocacy endures and will likely never end. As 

Native people, we must continue to fight for selfdetermination and against oppression.

Tribes differ greatly in their awareness of and 

attitudes about tribal members with disabilities, 

as does their capacity and willingness to address 

the needs of tribal members with disabilities. It 

is very important that consumers speak up about 

services 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 carry you 

into the building. You keep doing that, she says, 

and they will finally get tired of carrying you and 

build you a ramp.

Four Steps to Self-Advocacy

To effectively advocate for yourself, it’s important 

to invest time in developing an effective strategy. 

The four steps that will help you be successful 

202 National Council on Disability/National Indian Council on Aging
are research, preparation, influencing, and 

following up.

Step 1: Research

Do your homework and have information about 

the issue so you can effectively persuade others 

to do what’s right.

A. Learn Everything About the Issue

Be familiar and knowledgeable about all 

aspects of the issue to give you confidence 

and able to counter opposing arguments.

B. Have Detailed Goals

Make specific, achievable goals. Remember 

small victories can lead to big changes.

C. Develop Solutions

Offer solutions to address the issues you 

are advocating for.

D. Identify Stakeholders

Identify the people, organizations, and tribal 

leaders who can help bring the change you 

want to make. Know their feelings about 

the issue. Are they opposed, neutral, or 

in agreement? Next, create a network of 

people who are in agreement with your 

position and contact them for help and 

information as needed.

Step 2: Preparation

The second step is to develop a plan of what to 

communicate and how. You can communicate 

in face-to-face meetings, by telephone, in online 

meeting platforms such as Zoom and Teams, by a 

slide presentation, by social media, emails, letter 

writing, webinars, and town halls.

Practice what to say and ask others for 

feedback. This will build confidence and help 

you create a convincing argument. To develop 

an effective and memorable message, be:

A. Clear, Concrete, and Concise

Be as clear and as brief as possible. 

Condense both the issue and solution into a 

one- or two-page letter, one or two slides, or 

a couple minutes of speech.

B. Use Your Own Experience

To increase your audience’s understanding 

of the issue, use your own experience to 

show how you were affected. This personal 

touch can be very powerful.

C. Adjust Your Content for Specific Audiences 

and Formats

The focus of your message will be 

determined by your intent (your ask) and 

the audience. For example, advocating 

for a policy change before a tribal council 

will be quite different than a face-toface meeting with a service provider 

where you are advocating for a specific 

resource.

Step 3: Influencing

To influence decision makers to adopt your 

solution, model effective communication.

A. Be an Active Listener

Listen. Be respectful and attentive when 

other people speak.

B. Ask Questions

When advocating, always ask questions 

of both your allies and your opponents. It 

will help you understand other people’s 

perspectives and may help you see a 

different solution.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 203
C. Document Your Interactions

Keep notes (in writing or make a video) 

of meetings and phone calls so you have 

accurate documentation of what happened. 

Be sure to include the date, time, who you 

spoke with or was in attendance, and what 

was said.

Step 4: Following Up

Advocacy is a process, remember change 

remember change does not happen overnight. 

Consistency and timely follow-up are essential to 

successful advocacy.

A. Perseverance

You should persist with reaching out and 

following up. It may take many attempts and 

longer than you thought it would, but your 

efforts will help raise awareness and bring 

about change.

B. Allies

Allies are the people who support you. 

Use your allies to think of new ways to 

communicate about the issue you want 

addressed.

Advocacy Burnout

Resistance is NOT a one-lane highway. 

Maybe your lane is protesting; maybe 

your lane is organizing; maybe your lane 

is counseling; maybe your lane is art 

activism; maybe your lane is surviving 

the day. Do NOT feel guilty for not occupying every lane. We need all of them.

Lindsey Young

Advocacy burnout is an emotional, physical, 

and mental state of cumulative stress brought 

on by severe exhaustion. It can lead to a lack of 

interest in activities that were once meaningful. 

When encountering disinterested leaders or 

discrimination, it may feel like advocating is an 

uphill battle and a thankless job. To protect your 

overall well-being, self-care is important.

To avoid advocacy burnout, Jennifer Brown 

describes several strategies in her blog, “How 

Advocates for Inclusion Keep from Burning Out”

(Brown 2020).

Strategies to Avoid Advocacy 

Burnout

1. Voice your inner distress

Give yourself permission to vent your 

frustrations. Write about the situation in a 

journal. Talk with someone you are close to. 

Say it out loud to yourself.

2. Disentangle your sense of self from work

Reframe your work as merely one part of 

yourself, rather than an all-consuming identity 

or lifestyle. Examine the ratio between how 

much energy is spent on advocacy versus 

energy spent in other areas. Reflect on 

whether these divisions are balanced. To 

ensure your advocacy work can be sustained, 

devote time to other things, such as family, 

the community, celebrations, hobbies, and 

other responsibilities or interests.

3. Learn to say no, even when you want to 

say yes

If you are passionate about making the 

world more equitable, you may feel 

compelled to agree to attend every 

committee meeting, webinar, appointment, 

and side project. This is a quick route to 

burnout. Let go of the guilt that you are not 

204 National Council on Disability/National Indian Council on Aging
doing enough because there’s no shame 

in saying no sometimes or asking others 

to help. It’s important to pace yourself and 

manage your mental health.

4. Work incrementally and celebrate small 

victories

Establish small, achievable goals and 

rewards and celebrate these victories. Try 

listing three recent successes (however 

minor) and use these moments as fuel for 

motivation.

5. Reconnect with your support network 

and lean on your loved ones

Chances are the more isolated you feel, the 

more likely it is you will feel overwhelmed 

and hopeless. To care for yourself, reach out 

to your circle of loved ones, give up some of 

your advocacy work, delegate the work to 

others, and reconnect with the human side 

of your work to reignite a sense of purpose.

Systems Change Advocacy

Systems change advocacy is the process of 

making positive changes in our society that 

improves the quality of life for people with 

disabilities. Systems change advocacy influences:

■ The creation of new laws or changes to 

current law

■ The priorities and plans of government and 

nongovernment agencies

■ The policies and procedures that relate to 

services or systems (The Public Advocate, 

2019)

There are systems change advocates 

employed by organizations that serve the 

disability community. These professional 

What Do Systems Change Advocates Do?

A systems advocate is a person who advocates for the needs and rights of a group of people 

(people with a disability).

A systems advocate would work or advocate to change laws. For example, an advocate 

might work for a law that allows ALL people with very low-incomes to receive subsidized 

housing.

A systems advocate needs to be aware of tribal, neighborhood, city, county, state, and 

federal processes where decisions are being made.

A systems advocate should be in contact with many people, so they can affect the decision 

makers at all levels.

A systems advocate should participate in public hearings, advisory committees, public 

forums during governmental meetings, and any setting where public policy is being debated.

Writing letters to public officials in support of legislation that will positively affect the group 

as a whole is a common form of systems change advocacy.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 205
advocates seek to bridge the gap between the 

disabled community and elected officials by 

educating both about issues of importance and 

how the disabled community could be impacted. 

The major components of an advocacy program 

include organizing, advocating, and educating.

For example, the Navajo Nation has an Advisory 

Council on Disability. In 2021, the Navajo Nation 

held the 12th Annual Disability Conference with 

the theme of “We Walk in Beauty, Beyond Our 

Disability.” The conference aired on KTNN radio 

and some sessions can be found on YouTube. The 

conference held sessions on:

■ Updates of legal rights of people with 

disabilities at federal, state, and Navajo 

Nation level

■ Navajo Nation Advisory Council on Disability 

initiatives

■ Educational presentations

Tribal Leadership Advocacy

As sovereign nations, tribal nations have 

different avenues of advocacy. Tribal leaders will 

be successful advocates and create inclusive 

policies and laws when they have a solid 

understanding of the issues faced by AI/AN 

people with disabilities.

Guidelines for Writing a Resolution

To achieve the goal of building inclusive and 

equitable communities, it often begins with the 

passage of tribal policy through resolutions. 

Each tribe and Indian organization has its 

procedures set out for the creation and approval 

of resolutions. This section provides general 

guidelines on how to develop and present a 

resolution, including sample resolutions approved 

by the National Congress of American Indians.

Purpose of Submitting a Resolution

The purpose of writing a resolution is to provide 

a formal procedure so members of the tribal 

governing body can give input concerning 

policy and activities. 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 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 

establishes 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, 

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, or 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 

206 National Council on Disability/National Indian Council on Aging
Resolutions Components

Resolution Number: Supplied by the organization’s secretary

Title: Should reflect the action for which the resolution calls.

Date: Date submitted

Whereas: Statements should clearly define the problem and state a solution is possible. 

There should be 3–4 “Whereas” statements to maintain focus. Use the tribal governing body 

“Whereas” template if one exists.

Resolve: Each “resolved” portion of the resolution requests action by the tribal governing 

body.

Certification: This section signifies the resolution was formally adopted by the tribal governing 

body.

Refer to: Each tribe’s governing body has a referral process. Check with the designated 

secretary or tribal governing body.

Author/Contact Person: This section indicates the individual who drafted the resolution and 

can be contacted for clarification

the contact information for the person filing the 

resolution form. These components are detailed 

in the descriptions that follow.

Sample resolutions follow.

The National Congress of American 

Indians Resolution # MSP-15-012

Title: Support Expansion of Employment 

Services to American Indians/Alaska Natives 

with Disabilities

WHEREAS, we, the members of the National 

Congress of American Indians of the United 

States, invoking the divine blessing of the 

Creator upon our efforts and purposes, in order 

to preserve for ourselves and our descendants 

the inherent sovereign rights of our Indian 

nations, rights secured under Indian treaties 

and agreements with the United States, and all 

other rights and benefits to which we are entitled 

under the laws and Constitution of the United 

States, to enlighten the public toward a better 

understanding of the Indian people, to preserve 

Indian cultural values, and otherwise promote the 

health, safety and welfare of the Indian people, 

do hereby establish and submit the following 

resolution; and

WHEREAS, the National Congress of 

American Indians (NCAI) was established in 1944 

and is the oldest and largest national organization 

of American Indian and Alaska Native tribal 

governments; and

WHEREAS, there are nearly 1 million 

American Indians and Alaska Natives (AI/AN) 

who live with disabilities and nearly 600,000 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 207
of this population are of working age and that 

represents the highest rate of disability among 

any other demographic group; and

WHEREAS, the NCAI recognizes that AI/ANs 

with disabilities were not being well served 

by the states’ Vocational Rehabilitation (VR) 

services and that this is mainly due to the lack 

of culturally-centered services, because much 

like with the Veteran population, tribal people 

find it difficult to seek services in the traditional 

VR setting; and

WHEREAS, tribal governments asserted 

their sovereignty and called for the 

establishment of tribal vocational rehabilitation 

programs called American Indian Vocational 

Rehabilitation Services (AIVRS) funded by the 

U.S. Department of Education, Rehabilitation 

Services Administration (RSA) work by using 

culturally centered services to assist AI/ANs 

with disabilities find and obtain meaningful 

employment and consistently have a nearly 60% 

placement rate; and

WHEREAS, while progress has been made to 

increase the number of AIVRS programs serving 

Indian Country, there remains a significant gap 

in available programs versus the number of 

AI/ANs with disabilities needing culturallycentered services and of the 600,000 working 

age AI/ANs with a disability, AIVRS programs are 

currently serving less than 10,000; and

WHEREAS, this vulnerable part of our 

people are literally in crises and are crying 

out for the hope and the dignity of being able 

to care for themselves and their families by 

attaining meaningful employment and loss of 

hope for those with disabilities who cannot find 

employment contributes to the alarming suicide 

rates in Indian Country, finding ways to instill 

hope in them is paramount.

NOW THEREFORE BE IT RESOLVED, that 

the NCAI supports that the American Indian 

Vocational Rehabilitation Services programs 

continue providing culturally-centered services 

to their people and increase the number served 

and that the programs have demonstrated that 

culture and language are the keys in providing 

quality services; and

BE IT FURTHER RESOLVED, that the NCAI 

urges Congress and federal agencies to support 

direct permanent funding for AIVRS programs 

in addition to legislation and federal policies that 

increases the tribal set-aside for AIVRS programs 

to 5%; and

BE IT FURTHER RESOLVED, that the NCAI 

supports legislation and federal policies that 

establish Tribally-Controlled Satellite Services to 

meet the needs of Indian Country; and

BE IT FINALLY RESOLVED, that the NCAI 

urges Congress and federal agencies, including 

the U.S. Department of Education, to ensure 

that programs serving AI/ANs with a disability 

are administered and operated by triballycontrolled organizations that provide services in 

a culturally-centered manner, so as to improve 

the opportunities and resources for those living 

with disabilities, and that they may freely strive to 

realize their full potential; and

BE IT FURTHER RESOLVED, that the NCAI 

recognizes and supports the mission of the 

Consortia of Administrators of Native American 

Rehabilitation (CANAR) to empower American 

Indians and Alaskan Natives with disabilities 

through education and advocacy, and their work 

in bringing technical assistance training and 

capacity building to AIVRS programs; and

BE IT FURTHER RESOLVED, that this 

resolution shall be the policy of NCAI until it is 

withdrawn or modified by subsequent resolution.

208 National Council on Disability/National Indian Council on Aging
Certification

The foregoing resolution was adopted by the 

General Assembly at the 2015 Midyear Session 

of the National Congress of American Indians, 

held at the St. Paul River Centre, St. Paul, MN, 

June 28 to July 1, 2015, with a quorum present.

Brian Cladoosby, President

ATTEST: Aaron Payment, Recording Secretary

The National Congress of American 

Indians Resolution # ABQ-10-088

Title: Urge Congress and US Federal Agencies 

to Support Native Parents of Children 

with a Disability through Tribally-Driven 

Organizations and Service Providers

WHEREAS, we, the members of the National 

Congress of American Indians of the United 

States, invoking the divine blessing of the 

Creator upon our efforts and purposes, in order 

to preserve for ourselves and our descendants 

the inherent sovereign rights of our Indian 

nations, rights secured under Indian treaties and 

agreements with the United States, and all other 

rights and benefits to which we are entitled under 

the laws and Constitution of the United States, to 

enlighten the public toward a better understanding 

of the Indian people, to preserve Indian cultural 

values, and otherwise promote the health, safety 

and welfare of the Indian people, do hereby 

establish and submit the following resolution; and

WHEREAS, the National Congress of 

American Indians (NCAI) was established in 1944 

and is the oldest and largest national organization 

of American Indian and Alaska Native tribal 

governments; and

WHEREAS, at 28%, American Indians/Alaska 

Natives (AI/AN) have the highest ratio of disability 

than any other race and have a tremendous need 

to access culturally-appropriate services; and

WHEREAS, the NCAI has a longstanding 

policy to support the unique needs of AI/ANs 

living with a disability, and that Native parents 

of children with a disability need this support as 

they work with public/tribal/government school 

systems to provide educational opportunities that 

are essential in order for their children to become 

independent and self-sufficient; and

WHEREAS, the NCAI recognizes that for too 

long services have been provided to AI/ANs by 

non-Indian organizations that lack the cultural 

understanding to effectively work with Native 

peoples, and the NCAI also has a longstanding 

policy to support the need for full exercise of 

tribal self-determination and self-governance 

in caring for the needs of our own people 

collectively through the services of tribally driven 

organizations and service providers; and

WHEREAS, the NCAI recognizes that by 

supporting programs serving AI/ANs to be 

administered and operated by tribally-driven 

organizations it alleviates the unfortunate, 

but inevitable, culture clashes that often arise 

when differing value systems and management 

methods collide.

NOW THEREFORE BE IT RESOLVED, that 

the NCAI urges Congress and federal agencies 

that authorize, and award grants meant to 

serve tribal communities and AI/AN parents of 

children with a disability to take action in respect 

for the principles of self-determination and 

self-governance by ensuring that these grant 

recipients are tribally-driven organizations and/or 

service providers; and

BE IT FURTHER RESOLVED, that the NCAI 

urges Congress and federal agencies, including 

the U.S. Department of Education and the U.S. 

Department of Health and Human Services, to 

ensure that programs serving AI/AN parents 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 209
of children with a disability are administered 

and operated by tribally-driven organizations 

that provide services in a culturally appropriate 

manner, so as to improve the opportunities and 

resources for those living with disabilities, and 

that they may freely strive to realize their full 

potential; and

BE IT FINALLY RESOLVED, that the NCAI 

urges federal agencies to exercise their fiduciary 

responsibility and seek to recruit and retain 

qualified AI/AN candidates to direct and carry 

out the day to day delivery of services to AI/AN 

parents of children with disabilities within the 

auspices of a tribally-driven organization; and

BE IT FINALLY RESOLVED, that NCAI urges 

tribal nations to support tribally driven programs 

and organizations that seek to serve AI/AN 

parents of children with a disability; and

BE IT FINALLY RESOLVED, that this 

resolution shall be the policy of NCAI until it is 

withdrawn or modified by subsequent resolution.

Certification

The foregoing resolution was adopted by the 

General Assembly at the 2010 Annual Convention 

of the National Congress of American Indians, 

held at the Albuquerque Convention Center in 

Albuquerque, NM, on November 14–19, 2010, 

with a quorum present.

Jefferson Keel, President

ATTEST: Mathew Wesaw, Recording 

Secretary

The National Congress of American 

Indians Resolution # ATL-14-060

Title: NICOA Elders Request Long Term Care 

Funding

WHEREAS, we, the members of the 

National Congress of American Indians of the 

United States, invoking the divine blessing of 

the Creator upon our efforts and purposes, 

in order to preserve for ourselves and our 

descendants the inherent sovereign rights 

of our Indian nations, rights secured under 

Indian treaties and agreements with the 

United States, and all other rights and benefits 

to which we are entitled under the laws and 

Constitution of the United States, to enlighten 

the public toward a better understanding of 

the Indian people, to preserve Indian cultural 

values, and otherwise promote the health, 

safety and welfare of the Indian people, do 

hereby establish and submit the following 

resolution; and

WHEREAS, National Indian Council on Aging, 

Inc. (NICOA) was established in 1976 by Tribal 

Leaders to advocate for improved comprehensive 

health, social services, and economic wellbeing 

for American Indian and Alaska Native Elders. 

NICOA, submits to the National Congress of 

American Indians (NCAI) this resolution passed 

by its members at their biennial meeting on 

September 5, 2014; and

WHEREAS, as the American Indian/Alaska 

Native Elder population increases, the urgent 

need for long term care services and supports 

also increases. According to the Administration 

on Aging, the number of AI/AN people age 65 

and older is projected to increase by nearly 

75% between 2010 and 2020. The Centers for 

Disease Control and Prevention found that Native 

people overall were 50.3% more likely to have 

a disability, when compared with the national 

average. Overall AI/AN populations experience 

some of the highest rates of chronic disease and 

disability in the U.S; and

WHEREAS, a 2010 survey by R. Tuner Goins, 

Ph.D. found that out of 566 tribes only 15 percent 

210 National Council on Disability/National Indian Council on Aging
of tribes had nursing home services and 16 

percent had assisted living services; and

WHEREAS, The Affordable Care Act and 

its dual legislation, the Indian Healthcare 

Improvement Act grants the Indian Health 

Service (IHS) specific authorities for provision of 

long term care; and

WHEREAS, the aforementioned legislation only 

authorizes IHS to provide services but does not 

mandate any new funding specific to long-term 

care. The Indian Health Service does provide care 

but has been underfunded for decades. A 2005 

GAO report titled “Indian Health Service: Health 

Care Services Are Not Always Available to Native 

Americans” highlighted the ongoing problems 

of long wait times, lack of adequate facilities and 

rationing of care due to lack of funding; and

WHEREAS, adequate appropriations are 

needed to address this impending health crisis.

NOW THEREFORE BE IT RESOLVED, 

that NCAI does hereby call on the Obama 

administration to request and for Congress to 

authorize and appropriate adequate funding for 

the provision of long term care services and 

supports in addition to home and community 

based services for American Indian and Alaska 

Natives; and

BE IT FURTHER RESOLVED, that this 

resolution shall be the policy of NCAI until it is 

withdrawn or modified by subsequent resolution.

Certification

The foregoing resolution was adopted by the 

General Assembly at the 2014 Annual Session 

of the National Congress of American Indians, 

held at the Hyatt Regency Atlanta, October 

26-31, 2014 in Atlanta, Georgia, with a quorum 

present.

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 

ACCESSIBILITY 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, powwow 

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

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 211
WHEREAS, the________recognize that no individual shall be discriminated against on the basis of 

disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, 

and accommodations of any place of tribal accommodation; and

WHEREAS, the______further recognize that the objective of the ADA is to provide mobility for 

Americans with disabilities and to enable them to lead normal and productive lives; and

WHEREAS, the______are aware that an estimated __ percent of the Native American population 

have disabilities and are denied social and economic enjoyment taken for granted by others who 

have no disabilities, e.g., employment and recreational activities, and

WHEREAS, the______are also aware that respondents to a recent survey of the American Indian 

Disability Legislation indicated that approximately 67 percent of the public buildings on the various 

Indian reservations are accessible, leaving one-third of the public buildings inaccessible; and

WHEREAS, the______have identified a need to develop a tribal policy implementing the 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, powwow grounds, and other 

areas.

BE IT FURTHER RESOLVED, that the______ are committed to developing a tribal policy to address 

and comply with ADA.

AND BE IT FURTHER RESOLVED, that there shall be an established committee to assist in the 

review process addressing the application of appropriate ADA accessibility guidelines.

AND BE IT FURTHER RESOLVED, that the______shall direct the Tribal Division of______and______, 

and any other tribal department whose involvement will be necessary to address and meet the 

guidelines of the ADA and to participate in said committee to ensure compliance.

Certification

The foregoing resolution was adopted by the Tribal Council on the____day of_____. ______, with a vote 

of _____for, _______opposed, and_____not voting, pursuant to authority vested in_______________

by_______as amended.

Chair, Tribal Council

ATTEST:

Executive Secretary

*Thanks to the Confederated Salish and Kootenai Tribes for use of their tribal resolution to improve 

the overall quality of life for tribal members with disabilities.

212 National Council on Disability/National Indian Council on Aging
Resources

Organization What They Do Contact Information

National 

Association of 

Councils on 

Developmental 

Disabilities 

(NACDD)

This is the national association of the 56 

councils on developmental disabilities in 

the U.S. and its territories. Federal fun

support DD Councils to provide programs 

that promote self-determination, 

integration, and inclusion for all people 

with developmental disabilities

NACDD

1825 K Street, Suite 600

Washington, DC 20006

Phone: 202-506-5813

https://www.nacdd.or

National Congress 

of American 

Indians (NCAI)

The oldest and largest representative 

American Indian and Alaska Native 

organization serving the broad interests 

of tribal governments and communities

NCAI

1516 P Street NW

Washington, DC 20005

Phone: 202-466-7767

Fax: 202-466-7797

https://www.ncai.or

National Disability 

Rights Network 

(NDRN)

NDRN is the nonprofit membership 

organization for the federally mandated 

Protection and Advocacy (P&A) Systems 

and the Client Assistance Programs (CAP) 

for people with disabilities

NDRN

820 First Street, NE, Ste 740

Washington, DC 20002

Phone: 202-408-9514

Fax: 202-408-9520

TDD/TTY: 202-408-9521

https://www.ndrn.or

To find your state P&A/CAP:

https://www.ndrn.org/abou

ndrn-member-agencies/

Native American 

Disability Law 

Center (NADLC)

NADLC provides advocacy, referral 

information, and educational resources 

to all Native Americans with a disability 

living anywhere in the Four Corners area 

who feels that they have been:

■ discriminated against because of 

their disability

■ abused or neglected

■ wrongly denied a service

NADLC

905 W. Apache Stree

Farmington, NM 87401

Phone: 505-566-5880

Fax: 505-566-5889

https://www

.nativedisabilitylaw.or

University Centers 

for Excellence in 

Developmental 

Disabilities 

(UCEDD)

UCEDDs work with people with disabilities, 

members of their families, state and local 

government agencies, and community 

providers in projects that provide training, 

technical assistance, service, research, 

and information sharing, with a focus on 

building the capacity of communities to 

sustain all their residents

To find your local UCEDD:

https://www.aucd.or

directory/directory

cfm?program=UCEDD

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 213
214 National Council on Disability National Council on Disability/National Indian Council on Aging
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 the same 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.

This handbook is for anyone—with or without a

disability—who wants to interact more effectively 

with people with disabilities. 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.

From the San Antonio Disability Etiquette 

2011 publication:

Distinction Between Disability and 

Handicap

A Disability is a condition caused by an accident, 

trauma, genetics or disease which may limit 

a person’s mobility, hearing, vision, speech or 

mental function. Some people with disabilities 

have one or more disabilities.

A Handicap is a physical or attitudinal 

constraint that is imposed upon a person, 

regardless of whether that person has a 

disability. Webster’s Ninth New Collegiate 

Dictionary defines handicap as “to put at a 

disadvantage”.

Example: Some people with disabilities 

use wheelchairs. Stairs, narrow doorways and 

curbs are handicaps imposed upon people with 

disabilities who use wheelchairs.

People with disabilities have all manner of 

disabling conditions:

■ mobility impairments

■ blindness and vision impairments

■ deaf and hard of hearing

■ speech and language impairments

■ cognitive and learning impairments

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 215
The information provided below this 

paragraph and to the end of the chapter 

is directly quoted from the United Spinal 

Association, Disability Etiquette 2015 

publication:

The Basics

Ask Before You Help

Interact with the person as a person first! Just 

because someone has a disability, don’t assume 

he or she needs help. Adults with disabilities want 

to be treated and viewed as independent. Offer 

assistance only if the person appears to need it 

and ask how you may help before you act.

Be Sensitive About Physical Contact

Some people with disabilities depend on their 

arms for balance. Grabbing them—even if your 

intention is to assist—could knock them off 

balance. Avoid patting a person on the head or 

touching his wheelchair, scooter, or cane. People 

with disabilities consider their equipment part of 

their personal space.

Think Before You Speak

Always speak directly to the person with a 

disability, not to his companion, aide, or sign 

language interpreter. Don’t apologize if you use 

an expression such as “I gotta run” or “See you 

later” that relates to the person’s disability. These 

expressions are part of everyday language, and it 

is likely the apology will be more offensive than 

the expression.

Don’t Make Assumptions

People with disabilities are the best judge of what 

they can or cannot do. Don’t make decisions for 

them about participating in any activity.

Terminology Tips

Put People First

Refer to the individual first, then to his or her 

disability, when it is relevant and appropriate. 

Say “person with disability” rather than 

“disabled person” or use the following 

formula:

Name or 

Title of a 

Person

+ Verb +

Assistive 

Device or 

Disability

Professor, 

student, 

person

■ Has

■ Uses

■ Utilizes etc

Wheelchair, 

autism, 

development 

delay, etc

The following terms should be avoided in a 

disability context, because they have negative 

meanings:

■ invalid

■ wheelchair-bound

■ defect

■ handicapped

■ victim

■ suffers from

■ crippled

■ a patient

Don’t portray people with disabilities as overly 

courageous, brave, special, or superhuman. 

This implies that it is unusual for people with 

disabilities to have talents or skills.

Avoid using the term “normal” to describe 

people who don’t have disabilities. It is better to 

say “people without disabilities” or “typical,” if 

necessary to make comparisons.

216 National Council on Disability/National Indian Council on Aging
People Who Use Wheelchairs or 

Other Mobility Devices

People who use wheelchairs have different 

disabilities and varying abilities. Some can use 

their arms and hands. Some can get out of their 

wheelchairs and even walk for short distances.

People who use wheelchairs are individuals, 

not equipment. Don’t lean over someone who 

uses a wheelchair to shake another person’s hand 

or ask a wheelchair user to hold coats. Setting 

your drink on the desktop attached to someone’s 

wheelchair is a definite no-no.

■ Don’t push or touch a person’s wheelchair; 

it’s part of their personal space. If you help 

someone down a curb without waiting for 

instructions, you may dump them out of the 

chair. You may detach the chair’s parts if you 

lift it by the handles or the footrest.

■ Keep the ramps and wheelchair-accessible 

doors to your building unlocked and 

unblocked. Under the ADA, displays should 

not be in front of entrances, wastebaskets 

should not be in the middle of aisles, and 

boxes should not be stored on ramps.

■ Be aware of a person’s reach limits. Place as 

many items as possible within their grasp. 

And make sure that there is a clear path of 

travel to shelves and display racks. When 

talking to a person using a wheelchair, grab 

your own chair and sit at their level. If that’s 

not possible, stand at a slight distance so 

that they aren’t straining their neck to make 

eye contact with you.

■ If the service counter at your place of 

business is too high for a person using a 

wheelchair to see over, step around it to 

provide service. Have a clipboard handy if 

filling in forms or providing signatures is 

expected. A business may also want to 

make sure employees are prepared to angle 

down or detach a keypad so a person using a 

wheelchair can sign their electronic signature 

after making a credit card purchase.

■ If your building has different routes through 

it, be sure that signs direct people to the 

accessible routes around the facility. People 

who use canes or crutches also need to 

know the easiest way to get around a place, 

but stairs may be easier for them than 

a ramp. Ensure that security guards and 

receptionists can answer questions about the 

most accessible way around the building and 

grounds, including the location of elevators.

■ People who use canes or crutches need 

their arms to balance themselves, so never 

grab them. People who have limited mobility 

may lean on a door for support as they open 

it. Pushing the door open from behind or 

unexpectedly opening the door may cause 

them to fall. Even pulling out or pushing in 

a chair may present a problem. Always ask 

before offering help.

■ If you offer a seat to a person who has 

limited mobility, keep in mind that chairs 

with arms or with higher seats are easier for 

some people to use.

■ Falls are a big problem for people who have 

limited mobility. Be sure to set out adequate 

warning signs after washing floors. Also put 

out mats on rainy or snowy days to keep 

the floors as dry as possible. (Make sure 

they don’t bunch up and make the floor 

impassable.)

■ People who do not have a visible disability 

may have needs related to their mobility. 

For example, a person with a respiratory or 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 217
heart condition may have trouble walking 

long distances or walking quickly. Be sure 

that your museum, hotel, or department 

store has ample benches for people to sit 

and rest on.

■ Some people have limited use of their 

hands, wrists, or arms. Be prepared to offer 

assistance with reaching, grasping or lifting 

objects, opening doors and display cases, 

and operating vending machines and other 

equipment.

People Who Are Blind

People who are blind know how to orient 

themselves and get around on the street. They 

are competent to travel unassisted and they may 

use a cane or a guide dog. A person may have a 

visual disability that is not obvious. Be prepared 

to offer assistance—for example in reading—

when asked.

■ Identify yourself before you make physical 

contact with a person who is blind. Tell them 

your name and your role if it’s appropriate, 

such as security guard, usher, case worker, 

receptionist, or fellow student. And be sure 

to introduce them to others who are in the 

group so that they’re not excluded.

■ If a new customer or employee is blind or 

has low vision, offer them a tour of your 

facility.

■ If you have changed your facility (e.g., 

rearranged the furniture), notify your 

customers who are blind of the changes.

■ People who are blind may need their arms 

for balance, so offer your arm—don’t take 

theirs—if they need to be guided. (It is, 

however, appropriate to guide a blind 

person’s hand to a banister or the back of a 

chair to help direct them to a stairway or a 

seat.)

■ If the person has a guide dog, walk on the 

side opposite the dog. As you are walking, 

describe the setting, noting any obstacles, 

such as stairs (”up” or “down”) or a big 

crack in the sidewalk. Other hazards include 

revolving doors, half-opened filing cabinets or 

doors, and objects protruding from the wall at 

head level, such as hanging plants or lamps. 

If you are going to give a warning, be specific. 

Hollering, “Look out!” does not tell the person 

if they should stop, run, duck or jump.

■ If you are giving directions, give specific, 

nonvisual information. Rather than say, 

“Go to your right when you reach the office 

supplies,” which assumes the person knows 

where the office supplies are, say, “Walk 

forward to the end of this aisle and make a 

full right.”

■ If you need to leave a person who is blind, 

inform them you are leaving and ask if they 

need anything before you leave.

■ Don’t touch the person’s cane or guide 

dog. The dog is working and needs to 

concentrate. The cane is part of the 

individual’s personal space. If the person 

puts the cane down, don’t move it. Let them 

know if it’s in the way.

■ Offer to read written information—such 

as the menu, merchandise labels, or bank 

statements—to customers who are blind. 

Count out change so that they know which 

bills are which.

■ If you serve food to a person who is blind, 

let them know where it is on the plate 

218 National Council on Disability/National Indian Council on Aging
according to a clock orientation (12 o’clock 

is furthest from them, 6 o’clock is nearest). 

Remove garnishes and anything that is not 

edible from the plate. Some patrons may 

ask you to cut their food; this can be done in 

the restaurant’s kitchen before the meal is 

served.

People With Low Vision

A person who has low vision may need 

written material in large print. A clear font with 

appropriate spacing is just as important as the 

type size. Labels and signs should be clearly 

lettered in contrasting colors. It is easiest for 

most people with low vision to read bold white 

letters on black background. Avoid using all 

uppercase letters because it is more difficult for 

people with low vision to distinguish the end of a 

sentence.

■ Good lighting is important, but it shouldn’t 

be too bright. In fact, very shiny paper or 

walls can produce a glare that disturbs 

people’s eyes.

■ Keep walkways clear of obstructions. If 

people with low vision regularly use your 

facility as customers or employees, inform 

them about any physical changes, such as 

rearranged furniture, equipment, or other 

items that have been moved.

The Deaf or Hard of Hearing

American sign language (ASL) is an entirely 

different language from English, with a syntax all 

its own. Lip reading is difficult for Deaf people if 

their first language is ASL because the majority of 

sounds in English are formed inside the mouth, 

and it’s hard to lipread a second language.

People who have hearing loss, however, 

communicate in English. They use some hearing 

but may rely on amplification and/or seeing the 

speaker’s lips to communicate effectively.

There is a range of communication 

preferences and styles among people with 

hearing loss that cannot be explained in this 

brief space. It is helpful to note that the majority 

of people who incurred a hearing loss as adults 

do not communicate with sign language, do 

use English, and may be candidates for writing 

and assistive listening devices to help improve 

communication. People with cochlear implants, 

like other people with hearing loss, will usually 

inform you what works best for them.

■ When the exchange of information is 

complex (e.g., during a job interview or 

doctor’s visit or when reporting a crime) the 

most effective way to communicate with 

a native signer is through a qualified sign 

language interpreter. For a simple interaction 

(e.g., ordering in a restaurant or registering 

for a hotel room) writing back and forth is 

usually okay.

■ Follow the person’s cues to find out if she 

prefers sign language, gesturing, writing or 

speaking. If you have trouble understanding 

the speech of a Deaf or Hard of Hearing 

person, let her know.

■ When using a sign language interpreter, look 

directly at the Deaf person, and maintain 

eye contact to be polite. Talk directly to the 

person (“What would you like?”), rather than 

to the interpreter (“Ask her what she’d like.”).

■ Deaf people need to be included in the 

decision-making process for issues that 

affect them; don’t decide for them.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 219
■ Before speaking to a Deaf or Hard of 

Hearing person, make sure that you get 

her attention. Depending on the situation, 

you can extend your arm and wave your 

hand, tap her on the shoulder, or flicker 

the lights.

■ Rephrase, rather than repeat, sentences 

that the person does not understand.

■ When talking, face the person. A quiet, 

well-lit room is most conducive to effective 

communication. If you are in front of the 

light source (e.g., a window) with your back 

to it, the glare may obscure your face and 

make it difficult for the Hard of Hearing 

person to lip read.

■ Speak clearly. Most people who have a 

hearing loss count on watching people’s 

lips as they speak to help them understand. 

Avoid chewing gum, smoking, or obscuring 

your mouth with your hand while speaking.

■ There is no need to shout. If the person 

uses a hearing aid, it will be calibrated to 

normal voice levels; your shout will just 

distort the words.

■ Deaf people and some who have hearing 

loss or speech disabilities make and receive 

telephone calls with the assistance of 

various technologies including a TTY (short 

for teletypewriter) or a Video Relay Service 

(VRS). VRS enables a person who is Deaf 

or Hard of Hearing to make and receive 

telephone calls through a communications 

assistant who is a qualified American 

Sign Language Interpreter. For many 

people who are Deaf or Hard of Hearing, 

VRS is closer to “functionally equivalent” 

telephone services than any other form 

of relay service. For American Sign 

Language users, VRS conversations flow 

more smoothly, naturally, and faster than 

communicating by typing.

■ When a TTY user calls a business that 

does not have a TTY, she places the call 

through her state’s relay service. Likewise, 

a business that does not have a TTY can 

reach a customer who is a TTY user through 

the relay service. If you receive a relay call, 

the operator will identify it as such. Please 

do not hang up; this is the way that Deaf 

people are able to place an order at your 

pizza parlor, call your store to find out what 

hours you are open, or make a reservation 

at your restaurant.

People With Speech Disabilities

A person who has had a stroke, is Deaf, uses 

a voice prosthesis, or has a stammer or other 

type of speech disability may be difficult to 

understand.

■ Give the person your full attention. Don’t 

interrupt or finish the person’s sentences. If 

you have trouble understanding, don’t nod. 

Just ask them to repeat. In most cases the 

person won’t mind and will appreciate your 

effort to hear what they have to say.

■ If you are not sure whether you have 

understood, you can repeat for verification.

■ If, after trying, you still cannot understand 

the person, ask them to write it down 

or to suggest another way of facilitating 

communication.

■ A quiet environment makes communication 

easier.

220 National Council on Disability/National Indian Council on Aging
■ Don’t tease or laugh at a person with a 

speech disability. The ability to communicate 

effectively and to be taken seriously is 

important to all of us.

Persons of Short Stature

There are 200 diagnosed types of growth-related 

disorders that can cause dwarfism and that result 

in the person being 4 feet 10 inches or less in 

height. For an adult, being treated as cute and 

childlike can be a tough obstacle.

■ Be aware of having necessary items within 

the person’s reach to the maximum extent 

possible.

■ Be aware that people of short stature 

count on being able to use equipment 

that is at their height. Be sensitive 

about not using lower telephones, bank 

counters, and urinals if they are in limited 

supply.

■ As with people who have other disabilities, 

never pet or kiss a person of short stature 

on the head.

■ Communication can be easier when people 

are at the same level. People of short 

stature have different preferences. You 

might kneel to be at the person’s level; 

stand back so you can make eye contact 

without the person straining her neck (this 

can be hard to do in a crowded room); or sit 

in a chair. Act natural and follow the person’s 

cues.

People With Cerebral Palsy

As a result of injury to the central nervous 

system, people with cerebral palsy (CP) have 

difficulty controlling their muscles.

■ Many people with CP have slurred speech 

and involuntary body movements. Your 

impulse may be to discount what they have 

to say, based on their appearance. Monitor 

your responses and interact with the person 

as you would with anyone else.

■ A person who may appear to be drunk, 

sick, or have a medical emergency might in 

fact have CP or another disability. Get the 

facts before acting on your first impression, 

whether the situation is business, social, or 

law enforcement.

People With Tourette Syndrome

People with Tourette syndrome may make 

vocalizations or gestures such as tics that they 

cannot control. A small percentage of people 

with Tourette syndrome involuntarily say ethnic 

slurs or obscene words. An employee or other 

person with Tourette syndrome will benefit from 

the understanding and acceptance of coworkers 

and others.

■ If a person with Tourette makes vocalizations 

during a conversation, simply wait for her to 

finish and then calmly continue.

■ The more the person tries to contain these 

urges, the more the urges build up. It may 

be helpful for a person with Tourette to 

have the option to leave the meeting or 

conversation temporarily to release the 

build-up in a private place.

People Who Look Different

A different issue confronts people who 

may not be limited in their life activities, but 

who are treated as if they have a disability 

because of their appearance. People with facial 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 221
differences, such as cleft lip or palate, craniofacial disfigurement, or a skin condition; people 

who are above or below the average height or 

weight; people who may display visible effects of 

medication, such as a tremor—in short, people 

who look different—have the frequent experience 

of finding people staring at them, looking away, 

or looking through them as if they are invisible.

■ If the situation is appropriate, strike up a 

conversation and include the person in 

whatever is going on.

People With Hidden Disabilities

Not all disabilities are apparent. A person may 

make a request or act in a way that seems 

strange to you. That request or behavior may be 

disability-related.

For example, you may give seemingly 

simple verbal directions to someone, but the 

person asks you to write the information down. 

They may have a disability that makes written 

communication easier for them. Or a person may 

ask to sit, rather than stand, in line. This person 

may be fatigued from a condition such as cancer 

or may be feeling the effects of medication.

Even though these disabilities are hidden, they 

are real. Please respect the person’s needs and 

requests whenever possible.

People With Epilepsy or Seizure 

Disorders

Epilepsy is a neurological condition characterized 

by seizures that happen when the electrical 

system of the brain malfunctions. The seizures 

may be convulsive or the person may appear to 

be in a trance. During complex partial seizures, 

the person may walk or make other movements 

while he is, in effect, unconscious.

■ If a person has a seizure, you cannot do 

anything to stop it. If he has fallen, be 

sure his head is protected and wait for the 

seizure to end.

■ When a seizure has ended, the person may 

feel disoriented and embarrassed. Try to 

ensure that he has privacy to collect himself.

■ Be aware that strobe lights can trigger 

seizures in some people.

People With Multiple Chemical 

Sensitivity (MCS) and Respiratory 

Disabilities

People with MCS and respiratory disabilities 

such as asthma or emphysema react to toxins in 

the air. Stale air, fumes from cleaning products, 

perfume, carpeting, air freshener, or even the 

fumes from magic markers can trigger a severe 

reaction.

■ Try to avoid spray-cleaning tables, 

windows, or other surfaces while people 

are in your place of business. If you must 

use a spray product, spray or pour it closely 

into the cloth, not into the air. Use lesstoxic products when possible. Request 

that staff that have contact with the public 

go easy on fragranced body-care products 

like cologne, hair spray, hand lotion, and 

aftershave.

■ Maintaining good ventilation and indoor air 

quality will not only benefit your customers 

who have MCS and respiratory disabilities, it 

will also help you and all of your employees 

stay healthier.

■ Secondhand smoke can be particularly 

harmful to people with MCS or respiratory 

disabilities. Follow and enforce no-smoking 

222 National Council on Disability/National Indian Council on Aging
regulations, including in restrooms and 

stairwells. Discourage smokers from 

congregating at the entrance to your 

business. If appropriate, designate a 

separate smoking area where the door is 

kept closed and the air ventilates to the 

outside.

People With HIV & AIDS

People with human immunodeficiency virus (HIV) 

or Autoimmune Deficiency Syndrome (AIDS) 

have impaired immune systems, so their bodies 

have trouble fighting off infections.

■ You can’t catch HIV from casual contact 

such as shaking hands, so don’t be afraid of 

touching or being touched by a person with 

AIDS.

■ A person with HIV or AIDS, however, 

is at significant risk of picking up an 

airborne infection. Be conscious of not 

putting someone else at risk. If you have 

a respiratory infection or any other easily 

transmittable illness, be considerate of all 

your customers and employees and stay 

home, if possible.

■ Many people with AIDS feel stigmatized. 

By simply greeting or shaking the person’s 

hand, you are letting them know that they 

are accepted.

A word about confidentiality: You may really 

care, or you may just be curious about a person 

with a disability who is in crisis, suddenly ill, or 

misses work for unexplained reasons. In spite 

of your concern, please respect the privacy of a 

person with a disability. Allow them to discuss 

their situation if and when they feel comfortable 

doing so.

People with Psychiatric Disabilities 

or Mental Illness

People with psychiatric disabilities may at 

times have difficulty coping with the tasks 

and interactions of daily life. Their disorder 

may interfere with their ability to feel, think, or 

relate to others. Most people with psychiatric 

disabilities are not violent. One of the main 

obstacles they face is the attitudes that people 

have about them. Because it is a hidden disability, 

chances are you will not even realize that the 

person has a mental health condition.

■ Stress can affect the person’s ability to 

function. Try to keep the pressure of the 

situation to a minimum.

■ People who have psychiatric disabilities have 

varying personalities and different ways of 

coping with their disability. Some may have 

trouble picking up on social cues; others 

may be super sensitive. One person may be 

very high energy, while someone else may 

appear sluggish. Treat each person as an 

individual. Ask what will make them most 

comfortable and respect their needs to the 

maximum extent possible.

■ In a crisis, stay calm and be supportive as 

you would with anyone. Ask how you can 

help and find out if there is a support person 

who can be sent for. If appropriate, you 

might ask if the person has medication that 

they need to take.

People With Intellectual Disabilities

An intellectual disability is a developmental 

disability that affects a person’s intellectual 

functioning, such as reasoning, learning, 

problem-solving, and adaptive behavior. Adaptive 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 223
behavior limitations impact areas of daily 

living skills, such as travel, shopping, following 

directions, and reading environmental and social 

cues.

■ Speak to the person as you would any other 

adult. Use simple language, not baby talk.

■ Use clear, concise, short sentences with 

simple language. Do not give more than 

one direction in a sentence. Be prepared to 

repeat yourself or use other words if they do 

not respond.

■ Be patient and allow time for the person 

with an intellectual disability to process the 

information before responding.

■ People with intellectual disabilities may be 

anxious to please or to agree with what you 

say. Be sure they know they can refuse to 

do something or say they don’t know what 

you mean. This is especially important in 

certain situations such as law enforcement 

or health care.

■ Keep in mind that noisy environments or 

ones with many distractions may make 

it difficult for them to focus on a task or 

direction, especially when first learning how 

to do something.

■ Do not assume that a person with an 

intellectual disability cannot learn. They may 

only need a little more time and attention to 

transfer what is learned in one situation to 

another.

■ Clear signage and pictograms identifying 

different areas of a facility may increase 

their ability to navigate through a building.

■ Remember people with intellectual 

disabilities can and do live and work 

independently and productively in the 

community. They want to be treated with 

respect and accorded their human dignity.

People with Learning Disabilities

Learning disabilities are lifelong disorders that 

interfere with a person’s ability to receive, 

express, or process information. Although they 

have certain limitations, most people with 

learning disabilities have average or aboveaverage intelligence. You may not realize that 

the person has a learning disability because he 

functions so well. Or you may be confused about 

why such a high-functioning person has problems 

in one aspect of their work.

■ People with dyslexia or other reading 

disabilities have trouble reading written 

information. Give them verbal explanations 

and allow extra time for reading.

■ Don’t be surprised if you tell someone 

very simple instructions and they request 

that you write them down. Because 

spoken information gets “scrambled” 

as they listen, a person who has a 

learning disability such as auditory 

processing disorder may need information 

demonstrated or in writing.

■ Ask the person how you can best 

relay information. Be direct in your 

communication. A person with a learning 

disability may have trouble grasping 

subtleties.

■ It may be easier for the person to 

function in a quiet environment without 

distractions, such as a radio playing, 

people moving around, or loudly patterned 

curtains.

224 National Council on Disability/National Indian Council on Aging
People with Traumatic (or Acquired) 

Brain Injury

People with traumatic brain injury have had 

damage to the brain usually as the result of 

trauma, such as an accident or stroke.

■ Some of the factors that affect people with 

learning disabilities also apply to people 

with traumatic brain injury. People with brain 

injury may have a loss of muscle control or 

mobility that is not obvious. For example, a 

person may not be able to sign her name, 

even though she can move her hand.

■ A person with a brain injury may have poor 

impulse control. The person may make 

inappropriate comments and may not 

understand social cues or “get” indications 

that she has offended someone. In her 

frustration to understand or to get her own 

ideas across, she may seem pushy. All of 

these behaviors arise as a result of the 

injury.

■ A person with a brain injury may be unable 

to follow directions due to poor short-term 

memory or poor directional orientation. She 

may ask to be accompanied, or she may use 

a guide dog for orientation, although she 

does not appear to be mobility impaired.

■ If you are not sure that the person 

understands you, ask if she would like you 

to write down what you were saying.

■ The person may have trouble concentrating 

or organizing her thoughts, especially in an 

overstimulating environment like a crowded 

movie theater or transportation terminal. 

Be patient. You might suggest going 

somewhere with fewer distractions.

People Who Use Service Animals

Some people who are Deaf, blind or have low 

vision, or who have traumatic brain injury, seizure 

disorder, or a range of other disabilities may use a 

service animal to assist them with daily living.

■ While you may inquire whether an animal 

is a service animal, the person may not 

have information identifying it as such. This 

means that in general, you will need to 

modify a “no animals” policy to allow the 

person to enter with her service animal. 

Barring a direct threat to health and safety, 

this requirement of the ADA is generally 

thought to take precedence over any health 

codes, such as those for restaurants, and 

personal preferences, such as those of taxi 

drivers, prohibiting pets.

■ Service animals are generally highly trained 

and well behaved. You may ask the person 

to remove the animal if she does not have 

the animal under her control. Do not touch 

the service animal without permission. The 

animal may be adorable, but it is on the job.

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 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 225
well-being by promoting the results of research 

to the media and health and human services 

organizations.

Canine Companions for Independence

National Headquarters & Northwest 

Regional Center

2965 Dutton Avenue

PO Box 446

Santa Rosa, CA 95402-0446

Phone: (707) 577-1700

TDD: (707) 577-1756

E-mail: info@caninecompanions.org

Dogs for the Deaf

10175 Wheeler Road Central Point, OR 97502

Voice/TDD: (541) 826-9220

Fax: (541) 826-6696

E-mail: info@dogsforthedeaf.org

Dogs for the Deaf’s mission is to rescue and 

professionally train dogs to assist people and 

enhance their lives. Hearing dogs are chosen from 

adoption shelters, where they might otherwise 

be euthanized if no homes are found for them. 

By using shelter dogs, Dogs for the Deaf is able 

to help alleviate some of the unwanted dog 

population by rescuing these dogs, training them, 

and placing them in loving homes where they can 

provide an important service. The dogs are usually 

mixed breeds, small to medium in size, and up to 

24 months of age. The trainers look for dogs that 

are friendly, energetic, healthy, and intelligent. 

Each dog is individually evaluated by a Dogs for 

the Deaf trainer. Those passing the aptitude tests 

are brought back to the facility for a thorough 

medical evaluation and needed vaccinations. All 

dogs are spayed or neutered and then begin the 

intensive four to six months of training.

Emergency Evacuation Procedures 

for People with Disabilities

People with disabilities must be considered in 

any facility’s evacuation plan.

■ Compile a voluntary list of people with 

disabilities who are regulars at your facility, 

such as employees, students, or residents. 

While you are compiling this list, let people 

know that even though they may not 

consider themselves to have a disability, 

they should be included if they may need 

help during an emergency. For example, this 

might apply to someone whose asthma may 

be triggered by stress or smoke. Keep the list 

updated to include people who are living with 

temporary disabilities, such as a pregnant 

woman or someone with a broken leg.

■ Interview each individual on the list to plan 

the most effective way to assist them in case 

of an emergency. For example, a person with 

a cognitive disability may get confused and 

need assistance in following directions.

■ Also develop a plan, including a voluntary 

sign-in, for an emergency that may affect 

people who are not attached to the facility, 

such as customers, theatergoers, patients, 

or other members of the public.

■ Practice the evacuation procedures and 

keep your plans up to date.

Autistic People

There are several important points to consider 

when meeting the needs of autistic people that 

can help them be safe, included, respected, 

226 National Council on Disability/National Indian Council on Aging
and equal participants in all kinds of activities. 

Remember that the things listed here are access 

needs and not conveniences or luxuries. Each 

autistic person is different and may need more or 

less or different accommodations.

■ Please use respectful language, including 

considering identity-first (autistic) vs. personfirst (person with autism) language. Many 

in the autistic community strongly prefer 

identity-first language and should have their 

wishes respected. Respectful language also 

means not using functioning (high vs. low 

functioning) labels to describe people.

■ Do not insist on eye contact. Eye contact can 

be very distracting or even uncomfortable 

and threatening to many autistic people.

■ It is important to understand that autistic 

people communicate in many different 

ways, from spoken words to typing to 

gestures and sounds. Meaningful interaction 

with autistic people must involve respecting 

their manner of communication. Make 

sure to allow for sufficient processing time 

when having a conversation with or asking 

questions of an autistic person. Offering 

a text-based way to communicate (text, 

instant message, etc.) is a good alternative 

for people who may be uncomfortable with 

oral speech in some or all settings.

■ Bear in mind that an autistic person’s tone of 

voice, body language, or facial expressions 

may not match what they intend to 

communicate. Do not expect an autistic 

person to read nonverbal communication. 

When necessary, be clear and direct.

■ Large groups can be overstimulating or 

overwhelming for many autistic people. It 

can be difficult for autistic people to time 

their responses or understand the social 

nuances of large groups. Small groups 

in quiet rooms can be a good option for 

meaningful autistic participation.

■ Some autistic people have difficulty 

understanding auditory information, 

especially when there is background noise. It 

is helpful to minimize nonessential sensory 

input to create a safer sensory environment 

and facilitate autistic communication. These 

can be things as simple as closing doors 

to shut out background noise or finding 

environments to meet that are quiet.

■ To accommodate sensory needs, refrain 

from wearing perfumes or scented toiletries. 

Loud noises should be avoided. Lighting is 

important as well. Fluorescent lighting can 

cause severe sensory processing issues, so 

natural light or soft, incandescent lighting is 

better. Ask before using flash photography 

as it can cause sensory overload, as well as 

seizures in the third of autistic people who 

have seizures and/or epilepsy.

It can be helpful to make sure your agenda 

or plans are concrete and presented in advance, 

then adhered to. Sudden changes and transitions 

are difficult for many autistic people.

(Contributed by the Autistic Self Advocacy 

Network, http://autisticadvocacy.org/)

Conflict Management

Sometimes conflicts arise between people 

with disabilities and the places they visit for 

work, recreation, health care, or education. 

These conflicts are usually the result of 

misunderstanding or a lack of information. 

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 227
Sometimes conflicts develop between people 

with disabilities who have conflicting needs. For 

example, a person who has a hearing loss cannot 

hear the proceedings with the window open, 

but a person with Multiple Chemical Sensitivity 

needs the window open for fresh air; someone 

who uses a service dog may run into a conflict 

with a person who has an anxiety disorder and an 

extreme fear of dogs.

All of these situations call for flexibility, 

patience, creativity, and open communication—a 

willingness to listen to the other person’s 

perspective and to learn is need.

Sometimes good faith efforts are not enough, 

and parties have difficulty working out their 

differences. In these cases, consider using the 

services of a skilled mediator.

A Final Word

People with disabilities are individuals with 

families, jobs, hobbies, likes and dislikes, and 

problems and joys. While the disability is an 

integral part of who they are, it alone does not 

define them. Don’t make them into disability 

heroes or victims. Treat them as individuals.

Glossary of Acceptable Terms

Labels Not to Use People First Language

The handicapped or the disabled People with disabilities

The mentally retarded or he’s retarded People with an intellectual disability

The autistic child People with autism

She’s a Down; she’s mongoloid She has down syndrome

Birth defect Has a congenital disability

Epileptic A person with epilepsy

Wheelchair-bound or confined to a wheelchair Uses a wheelchair or mobility chair, or is a 

wheelchair user

She is developmentally delayed She has a developmental disability

He’s crippled or lame He has a physical disability

She’s a dwarf or midget She has a short stature; she is a little person

Mute Communicates with her eyes/device

Is learning disabled Has a learning disability

Afflicted with, suffers from, victim of Person who has

She’s emotionally disturbed; she’s crazy She has an emotional disability

Normal and/or healthy A person without a disability

Quadriplegic, paraplegic, etc. He has quadriplegia, paraplegia, et

She’s in Special Ed She receives Special Ed services

Handicapped parking, hotel room, etc. Accessible parking, hotel room, et

Client, consumer, recipient, etc. (e.g., when

person is making a purchase at a store)

Customer

228 National Council on Disability/National Indian Council on Aging
References

1 U.S. Bureau of Labor Statistics. “American Indians and Alaska Natives in the U.S. Labor Force.” Nov. 2019, 

https://www.bls.gov/opub/mlr/2019/article/american-indians-and-alaska-natives-in-the-u-s-labor-force.htm. 

Accessed 6 Oct. 2021.

2 U.S. Census Bureau. “Race and Ethnicity in the United States: 2010 Census and 2020 Census.” 12 Aug. 2021, 

https://www.census.gov/library/visualizations/interactive/race-and-ethnicity-in-the-united-state-2010-and-2020-

census.html. Accessed 5 Oct. 2021.

3 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. “Adults with 

Disabilities: Ethnicity and Race.” 16 Sept. 2020, https://www.cdc.gov/ncbddd/disabilityandhealth/materials/

infographic-disabilities-ethnicity-race.html Accessed 2 July 2021.

4 U.S. Department of the Interior, Indian Affairs. “About Us.” https://www.bia.gov/about-us#:~:text=There%20

are%20574%20federally%20recognized,Villages%20in%20the%20United%20States. Accessed July 2, 2021.

5 Young, Natalie A. E. “Childhood Disability in the United States: 2019.” American Community Survey 

Briefs, U.S. Department of Commerce, Mar. 2021, https://www.census.gov/content/dam/Census/library/

publications/2021/acs/acsbr-006.pdf. Accessed 1 July 2021.

6 “Functional Limitations and the Future Needs for Long Term Care.” University of North Dakota, National 

Resource Center on Native American Aging, 2002, https://www.nrcnaa.org/pdf/02-1.pdf. Accessed 2 July 2021.

7 U.S. Department of Labor, Office of Disability Employment Policy. “Frequently Asked Questions—General.” 

https://www.dol.gov/agencies/odep/publications/faqs/general. Accessed 19 February 2022.

8 American Indian Disability Legislation Project. University of Montana, Rural Institute on Disabilities, Research 

and Training Center on Disability in Rural Communities, 2000.

9 “Functional Limitations and the Future Needs for Long Term Care.” University of North Dakota, Center for 

Rural Health, National Resource Center on Native American Aging, 2002, https://www.nrcnaa.org/pdf/02-1.pdf. 

Accessed 2 July 2021.

10 “Needs Assessment, Identifying Our Needs: A Survey of Elders VII.” University of North Dakota, Center for 

Rural Health, National Resource Center on Native American Aging, 2020, https://www.nrcnaa.org/needsassessment. Accessed 19 Feb. 2022.

11 U.S. Department of Health and Human Services, The Centers for Disease Control and Prevention. “Leading 

Causes of Death—Females—Non-Hispanic American Indian or Alaska Native—United States, 2017.” https://

www.cdc.gov/women/lcod/2017/nonhispanic-native/index.htm. Accessed 19 Feb. 2022.

12 ———,———. “Leading Causes of Death—Males—Non-Hispanic American Indian or Alaska Native—United 

States, 2017.” https://www.cdc.gov/healthequity/lcod/men/2017/nonhispanic-native/ - anchor_1571150018. 

Accessed 19 Feb. 2022.

13 Thorton, Joshua, et al. “How does the ADA Apply to Tribal Nations and What Resources are Available Within 

Region 8?” Rocky Mountain ADA Center, June 2019, https://rockymountainada.org/resources/research/howdoes-ada-apply-tribal-nations-and-what-resources-are-available-within-region. Accessed 22 Feb. 2022.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 229
14 U.S. Department of Health and Human Services, Administration for Community Living. “The Developmental 

Disabilities Assistance and Bill of Rights Act of 2000.” 25 Mar. 2021, https://acl.gov/about-acl/authorizingstatutes/developmental-disabilities-assistance-and-bill-rights-act-2000. Accessed 19 Feb. 2022.

15 ———,———. “Older Americans Act.” 8 July 2021, https://acl.gov/about-acl/authorizing-statutes/olderamericans-act. Accessed 20 Feb. 2022.

16 U.S. Department of Housing and Urban Development, Office of Public and Indian Housing. “Notice PIH-2014-

08.” 30 Apr. 2014, https://www.hud.gov/sites/documents/PIH2014-08.PDF. Accessed 22 Feb. 2022.

17 U.S. Department of Justice. “Title II of the Civil Rights Act (Public Accommodations).” 27 Jan. 2022, https://

www.justice.gov/crt/title-ii-civil-rights-act-public-accommodations. Accessed 22 Feb. 2022.

18 U.S. Department of Labor, Employment and Training Administration. “Workforce Innovation and Opportunity 

Act.” https://www.dol.gov/agencies/eta/wioa. Accessed 22 Feb. 2022.

19 Brave Heart, Maria Yellow Horse. “The Return to the Sacred Path: Reflections on the Development of 

Historical Trauma.” 2001, https://www.ihs.gov/sites/telebehavioral/themes/responsive2017/display_objects/

documents/slides/historicaltrauma/htreturnsacredpath0513.pdf. Accessed 14 Oct. 2021.

20 North Dakota Department of Health, Division of Vital Statistics. “North Dakota 2017 Health Disparities Report.” 

https://www.health.nd.gov/sites/www/files/documents/Files/HSC/HEO/Health_Equity_Report.pdf. Accessed 

10 Mar. 2022.

21 Randall, Vernellia R. “Background: Disparity, Discrimination and Diversity in Health Care.” The Role of 

Governmental and Private Health Care Programs and Initiatives, U.S. Commission on Civil Rights, Sept. 1999,

22 https://archive.org/stream/healthcarechalle00unse/healthcarechalle00unse_djvu.txt. Accessed 27 Dec. 2002. 

Vol. 1 of The Health Care Challenge: Acknowledging Disparity, Confronting Discrimination, and Ensuring Equality.

23 “Strengthening Our Native Communities: How Understanding Adverse Childhood Experiences Can Help.” 

ACEs Toolkit. Association of American Indian Physicians, https://www.aaip.org/programs/aces-toolkit/. 

Accessed 10 Mar. 2022.

24 “Understanding the Destruction: Native American Life Today.” Native Hope, https://pages.nativehope.org/

native-american-life-today. Accessed 5 Nov. 2021

25 “American Quotes Native Prayer.” QuotesGram, https://quotesgram.com/american-quotes-native-prayer/. 

Accessed 11 Mar. 2022.

26 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services 

Administration. “Tribal TTA Center Healing-Informed Care Handout.” 11 Sept. 2015, https://www.samhsa.gov/

sites/default/files/tribal-tta-healing-informed-care-handout.pdf. Accessed 25 Oct. 2021.

27 “Alcohol and Drug Abuse Among Native Americans.” American Addiction Centers, 7 Jan. 2022, https://

americanaddictioncenters.org/rehab-guide/addiction-statistics/native-americans. Accessed 15 Mar. 2022.

28 “Culturally-Informed Programs to Reduce Substance Misuse and Promote Mental Health in American 

Indian and Alaska Native Populations.” Prevention Solutions@Education Development Center, Mar. 2018, 

https://preventionsolutions.edc.org/sites/default/files/attachments/Culturally-Informed-Programs-to-ReduceSubstance-Misuse-and-Promote-Mental-Health-in-American-Indian-and-Alaska-Native-Populations_0.pdf. 

Accessed 17 Mar. 2022.

29 Culture Forward: A Strengths and Culture Based Tool to Protect our Native Youth from Suicide. Johns Hopkins, 

Center for American Indian Health, 16 Apr. 2021, https://caih.jhu.edu/programs/cultureforward. Accessed 

17 Mar. 2022.

30 O’Keefe, V. M. et al. “Increasing Culturally Responsive Care and Mental Health Equity with Indigenous 

Community Mental Health Workers.” Psychological Services, vol. 18, no. 1, Feb. 2021, pp. 84–92, https://

doi.org/10.1037/ser0000358. Accessed 14 Mar. 2022.

31 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center 

for Injury Prevention and Control. “WISQARSTM Web-Based—Injury Statistics Query and Reporting System.” 

2 Dec. 2021, https://www.cdc.gov/injury/wisqars/index.html. Accessed 15 Mar. 2022.

230 National Council on Disability/National Indian Council on Aging
32 ———, Substance Abuse and Mental Health Services Administration. “2018 National Survey on Drug Use 

and Health: American Indians and Alaska Natives.” PowerPoint, slide 7, https://www.samhsa.gov/data/

release/2018-national-survey-drug-use-and-health-nsduh-releases. Accessed 15 Mar. 2022.

33 ———,———, Tribal Training and Technical Assistance Center. “Circles of Care.” 6 July 2021, https://www

.samhsa.gov/tribal-ttac/circles-care. Accessed 17 Mar. 2022.

34 Aulandez, Kevalin M. et.al. “Cultural Sources of Strength and Resilience: A Case Study of Holistic Wellness 

Boxes for COVID-19 Response in Indigenous Communities.” Frontiers in Sociology, 22 Feb. 2021, https://

www.ncbi.nlm.nih.gov/pmc/articles/PMC8022692/. Accessed 28 Feb. 2022.

35 U.S. Department of Health and Human Services, Indian Health Service. “Coronavirus (COVID-19).” 10 Mar. 

2022, https://www.ihs.gov/coronavirus/. Accessed 11 Mar. 2022.

36 U.S. Department of Health and Human Services, Indian Health Service. “Eligibility for Services.” Indian Health 

Manual, https://www.ihs.gov/ihm/pc/part-2/p2c1/-2-1.2A. Accessed 23 Feb. 2022.

37 ———,———. “Purchased/Referred Care (PRC).” https://www.ihs.gov/prc/. Accessed 23 Feb. 2022.

38 Garfield, Rachel, et al. “The Coverage Gap: Uninsured Poor Adults in States That Do Not Expand Medicaid.” 

Kaiser Family Foundation, 21 Jan. 2021, https://www.kff.org/medicaid/issue-brief/the-coverage-gap-uninsuredpoor-adults-in-states-that-do-not-expand-medicaid/. Accessed 23 Feb. 2022.

39 “Medicaid Home Care Benefits for the Aging.” Paying for Senior Care, 14 Aug. 2020, https://www.payingfor

seniorcare.com/medicaid-waivers/home-care. Accessed 23 Feb. 2022.

40 U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. “Eligibility.” 

https://www.medicaid.gov/medicaid/eligibility/index.html. Accessed 23 Feb. 2022.

41 ———,———. “Express Lane Eligibility.” 6 Aug. 2021, https://www.medicaid.gov/medicaid/enrollmentstrategies/express-lane-eligibility-medicaid-and-chip-coverage/index.html. Accessed 24 Feb. 2022.

42 ———,———. “Home and Community-Based Services 1915 (c).” https://www.medicaid.gov/medicaid/homecommunity-based-services/home-community-based-services-authorities/home-community-based-services1915c/index.html. Accessed 24 Feb. 2022.

43 ———,———. “Mandatory and Optional Benefits.” https://www.medicaid.gov/medicaid/benefits/mandatoryoptional-medicaid-benefits/index.html. Accessed 18 Oct. 2021.

44 “The Children’s Health Insurance Program (CHIP).” Healthcare.gov, https://www.healthcare.gov/medicaid-chip/

childrens-health-insurance-program/. Accessed 24 Feb. 2022.

45 “What Part A Covers.” Medicare.gov., https://www.medicare.gov/what-medicare-covers/what-part-a-covers. 

Accessed 24 Feb. 2022.

46 “What Part B Covers.” Medicare.gov., https://www.medicare.gov/what-medicare-covers/what-part-b-covers. 

Accessed 24 Feb. 2022.

47 “What’s Medicare?” Medicare.gov., https://www.medicare.gov/what-medicare-covers/your-medicarecoverage-choices/whats-medicare. Accessed 24 Feb. 2022.

48 U.S. Department of Health and Human Services, Indian Health Service, VA HIS MOU. “Reimbursement 

Agreement Provides VA Funds for IHS Care for Native Veterans.” https://www.ihs.gov/vaihsmou/. Accessed 

4 Nov. 2021.

49 U.S. Department of Veterans Affairs, Indian Health Service. “Indian Health Service/Tribal Health Program/

Urban Indian Organization (I/T/U).” https://www.va.gov/COMMUNITYCARE/programs/veterans/ihs/index.asp. 

Accessed 4 Nov. 2021.

50 Knapp, Carla. “Reclaiming Our Story for Native Youth.” Boys and Girls Clubs of America, 4 Oct. 2021, https://

www.bgca.org/news-stories/2021/October/reclaiming-our-story-for-native-youth. Accessed 12 Oct. 2021.

51 “Recreational Activities for People with Disabilities.” CME Toolkit. Prime Education, 2014, https://cmetoolkit

.com/wp-content/uploads/Recreational-Activities-for-People-with-Disabilities.pdf. Accessed 21 Mar. 2022.

52 “History and Culture: Boarding Schools.” Northern Plains Reservation AID, http://www.nativepartnership.org/

site/PageServer?pagename=airc_hist_boardingschools. Accessed 5 Oct. 2021.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 231
53 “History of American Indian Schools.” Wikipedia, https://en.wikipedia.org/wiki/American_Indian_boarding_

schools. Accessed 5 Oct. 2021.

54 “Impact of Historical Trauma.” The National Native American Boarding School Healing Coalition, https://

boardingschoolhealing.org/education/impact-of-historical-trauma/. Accessed 23 Mar. 2022.

55 Rehyner, Jon. “1819–2013: A History of American Indian Education.” 3 Dec. 2013, https://www.edweek.org/

leadership/1819-2013-a-history-of-american-indian-education/2013/12. Slide 1. Accessed 23 Mar. 2022.

56 U.S. Department of Education, Institution of Education Sciences, National Center for Education Statistics, 

National Assessment of Educational Progress (NAEP). “National Indian Education Study 2019.” 2021, https://

nces.ed.gov/nationsreportcard/subject/publications/studies/pdf/2021018.pdf. Accessed 23 Mar. 2022.

57 ———,———,———. “Status and Trends in the Education of Racial and Ethnic Groups 2018.” May 2021, 

https://nces.ed.gov/pubs2019/2019038.pdf. Accessed 23 Mar. 2022.

58 ———, Office of Special Education and Rehabilitative Services, Office of Special Education Programs. “2020 

Annual Report to Congress on the Individuals with Disabilities Education Act (IDEA).” 25 Jan. 2022, https://

sites.ed.gov/idea/2020-annual-report-congress-idea/. Accessed 23 Mar. 2022.

59 “U.S. Indian Boarding School History.” The National Native American Boarding School Healing Coalition, 

21 Mar. 2022, https://boardingschoolhealing.org/. Accessed 23 Mar. 2022.

60 “A Comparison of ADA, IDEA, and Section 504.” Disability Rights Education & Defense Fund, https://dredf.org/

legal-advocacy/laws/a-comparison-of-ada-idea-and-section-504/. Accessed 13 Oct. 2021.

61 U.S. Department of Education, Institution of Education Sciences, National Center for Education Statistics, 

National Assessment of Educational Progress. “National Indian Education Study 2019.” 2021, https://nces.ed

.gov/nationsreportcard/subject/publications/studies/pdf/2021018.pdf. Accessed 23 Mar. 2022.

62 ———,———,———. “Status and Trends in the Education of Racial and Ethnic Groups 2018.” May 2021, 

https://nces.ed.gov/pubs2019/2019038.pdf. Accessed 23 Mar. 2022.

63 Saleh, Matthew J. D. “Your Child’s Rights: 6 Principles of IDEA.” Smart Kids with Learning Disabilities, https://

www.smartkidswithld.org/getting-help/know-your-childs-rights/your-childs-rights-6-principles-of-idea/. Accessed 

24 Mar. 2022.

64 U.S. Department of Education, Office for Civil Rights. “Employment and Postsecondary Education: 

Transitioning from School to Employment.” https://youth.gov/youth-topics/employment-and-postsecondaryeducation. Accessed 24 June 2021.

65 ———,———. “Transition of Students with Disabilities to Postsecondary Education: A Guide for Educators.” 

March 2011, https://www2.ed.gov/about/offices/list/ocr/transitionguide.html. Accessed 24 June 2021.

66 Connecticut, Special Education Network of Wilton. “Tips for Parents.” https://spednet.org/tips/. Accessed 

12 September 2022.

67 “Five Options 1-2-3.” Center for Parent Information and Resources, Oct. 2019, https://www.parentcenterhub.

org/disputes-overview/. Accessed 17 June 2021.

68 “Part B of IDEA: Services for School-Aged Children.” Center for Parent Information and Resources, Oct. 2018, 

https://www.parentcenterhub.org/partb/. Accessed 24 Mar. 2022.

69 Guidelines, Family and Child Education, June 2020, https://www.faceresources.org/. Accessed 26 Aug. 2021.

70 “Overview of Early Intervention.” Center for Parent Information and Resources, 1 Sept. 2017, https://www

.parentcenterhub.org/ei-overview/. Accessed 18 June 2021.

71 United States, Congress, Congressional Research Services. “The Individuals with Disabilities Education Act 

(IDEA), Part C: Early Intervention for Infants and Toddlers with Disabilities.” 9 Aug. 2019, https://sgp.fas.org/

crs/misc/R43631.pdf. Accessed 26 Aug. 2021.

72 U.S. Department of Health and Human Service, Centers for Disease Control and Prevention. “Individuals 

with Disabilities Education Act (IDEA) Services.” https://www.cdc.gov/ncbddd/cp/treatment.html. Accessed 

30 June 2021.

73 “About Independent Living.” National Council on Independent Living, https://ncil.org/about/aboutil/. Accessed 

28 Mar. 2022.

232 National Council on Disability/National Indian Council on Aging
74 “Provider Types.” Leading Age, https://leadingage.org/provider-types. Accessed 28 Mar. 2022.

75 U.S. Department of Health and Human Services, Administration for Community Living. “Services for Native 

Americans (OAA Title VI).” 19 Oct. 2020, https://acl.gov/programs/services-native-americans-oaa-title-vi. 

Accessed 28 Mar. 2022.

76 ———,———. “Strategic Framework for Action: State Opportunities to Integrate Services and Improve Outcomes 

for Older Adults and People with Disabilities.” June 2020, https://acl.gov/sites/default/files/programs/2020-06/

ACL_Strategic_Framework_for_Action_v1_ June 2020_final_508_v2.pdf. Accessed 29 Mar. 2022.

77 Oberlink, Mia. “What Is the AdvantAge Initiative?” The AdvantAge Initiative. https://apps.vnsny.org/advantage/

advantage.html. Accessed 31 Aug. 2022

78 U.S. Department of Health and Human Services, Administration for Community Living. “Centers for 

Independent Living Make Community Living Possible.” 1 Mar. 2022, https://acl.gov/sites/default/files/news

2018-08/ILProgramsIG.FinalWeb.pdf. Accessed 28 Mar. 2022.

79 U.S. Centers for Medicare and Medicaid. “Cherokee Nation Home Health Services.” CMS.gov., 1 Dec. 2021, 

https://www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/programexamples/cherokee-nation-oklahoma. Accessed 29 Mar. 2022.

80 ———. “Pueblo of Zuni’s LTSS Network.” CMS.gov., 1 Dec. 2021, https://www.cms.gov/Outreach-andEducation/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/program-examples/pueblo-of-zuni. Accessed 

29 Mar. 2022.

81 ———. “White Earth Long Term Care Consultation Services.” CMS.gov., 1 Dec. 2021, https://www.cms.gov/

Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/program-examples/white-earthojibwe-mn. Accessed 29 Mar. 2022.

82 U.S. Bureau of Labor Statistics. “American Indians and Alaska Natives in the U.S. labor force.” Monthly Labor 

Review, Nov. 2019, https://www.bls.gov/opub/mlr/2019/article/american-indians-and-alaska-natives-in-the-u-slabor-force.htm. Accessed 18 Oct. 2021.

83 San Antonio, Department of Public Works, Disability Access Office. Jan. 2011, https://www.sanantonio.gov/

Portals/0/Files/DAO/DisabilityEtiquetteHandbook.pdf. Accessed 20 Oct. 2021.

84 U.S. Office of Personnel Management. “Telework Guide.” https://www.telework.gov/. Accessed 12 September 

2022.

85 Gioannosa, Jennifer. “WIOA Career Pathways Programs.” Educational Data Systems, 26 July 2018, https://

www.edsisolutions.com/blog/wioa-implementation-how-career-pathways-brochures-can-help-free-templates. 

Accessed 20 Oct. 2021.

86 “Summary Description from a Disability Perspective: FINAL RULE Implementing Title I of the Workforce 

Innovation and Opportunity Act (Workforce Development Systems).” The LEAD Center, 19 Aug. 2016, https://

www.nationaldisabilityinstitute.org/wp-content/uploads/2018/12/wioa-title-1-final-rule-summary.pdf. Accessed 

19 Oct. 2021.

87 U.S. Department of Labor Employment and Training Administration. “Indian and Native American Programs.” 

https://www.dol.gov/agencies/eta/dinap. Accessed 20 Oct. 2021.

88 ———. “Laws and Regulations.” https://www.dol.gov/agencies/eta/disability/laws. Accessed 20 Oct. 2021.

89 ———. “Wagner-Peyser Act Employment Service Results.” https://www.dol.gov/agencies/eta/performance/

results/wagner-peyser. Accessed 20 Oct. 2021.

90 ———. “WIOA Section 166 Adult and Youth Funding for Native Americans PY 2021 Funding Allotments.” 

https://wdr.doleta.gov/directives/attach/TEGL/TEGL_22-20_Attachment_1.pdf. Accessed 20 Oct. 2021.

91 “WIOA Adult & Dislocated Worker Program Eligibility Policy #5000.” Pacific Mountain Workforce 

Development, 7 July 2016, https://pacmtn.org/wp-content/uploads/2018/02/5000-Adult_DW-Eligibility-2.pdf. 

Accessed 20 Oct. 2021.

92 U.S. Bureau of Labor Statistics “What Rehabilitation Counselors Do.” Occupational Outlook Handbook, 

8 Sept. 2021, https://www.bls.gov/ooh/community-and-social-service/rehabilitation-counselors.htm-tab-2. 

Accessed 18 Oct. 2021.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 233
93 U.S. Department of Labor. “Vocational Rehabilitation.” CareerOneStop, https://www.careeronestop.org/

ResourcesFor/WorkersWithDisabilities/vocational-rehabilitation.aspx. Accessed 20 Oct. 2021.

94 U.S. Department of Labor. “Vocational Rehabilitation.” CareerOneStop, https://www.careeronestop.org/

ResourcesFor/WorkersWithDisabilities/vocational-rehabilitation.aspx. Accessed 20 Oct. 2021.

95 Hutter, Victoria. “Fostering and Supporting Access to the Arts.” NEA Arts, no. 3, 2017, https://www.arts.gov/

sites/default/files/nea_arts/NEAArts_No3_2017.pdf. Accessed 21 March 2022.

96 “Oglala Lakota Artspace.” Artspace, 30 Mar. 2018, https://www.artspace.org/sites/default/files/downloads/

OglalaLakotaArtspace_6pgr_v5_30Mar18.pdf. Accessed 14 Apr. 2022.

97 “What We Do.” First Peoples Fund, https://www.firstpeoplesfund.org/what-we-do. Accessed 14 Apr. 2022.

98 U.S. Department of Labor, Office of Disability Employment Policy. “Self-Employment & Entrepreneurship.” 

https://www.dol.gov/agencies/odep/program-areas/employers/self-employment-entrepreneurship. Accessed 

25 Sept. 2021.

99 Leedom, Conor, and Axley Brynelson. “EEOC Addresses Telework as Reasonable Accommodation.” HR Daily 

Advisor, 11 Dec. 2020, https://hrdailyadvisor.blr.com/2020/12/11/eeoc-addresses-telework-as-reasonableaccommodation/. Accessed Sept. 2021.

100 Mitic. I. “Gig Economy Statistics: The New Normal in the Workplace.” Fortunly, 16 Aug. 2021, https://fortunly.

com/statistics/gig-economy-statistics/ - gref. Accessed 20 Oct. 2021.

101 Steward, Shelly, and Hilary Greenberg. “New Interactive Data Tools Added to Gig Economy Data Hub.” Gig 

Economy Data Hub,17 June 2019, https://www.gigeconomydata.org/blog/new-interactive-data-tools-addedgig-economy-data-hub. Accessed 25 Oct. 2021.

102 U.S. Office of Personnel Management. “Telework Guide.” https://www.telework.gov/. Accessed 12 September 

2022.

103 Martinez, Carole. “Artificial Intelligence and Accessibility: Examples of a Technology That Serves People with 

Disabilities.” 5 Mar. 2021, https://www.inclusivecitymaker.com/artificial-intelligence-accessibility-examplestechnology-serves-people-disabilities/. Accessed 11 Oct. 2021.

104 U.S. Department of Health and Human Services, National Institutes of Health, National Eye Institute. 

“NIH-funded Modern ‘White Cane’ Brings Navigation Assistance to the 21st Century.” 8 Sept. 2021. 

https://www.nei.nih.gov/about/news-and-events/news/nih-funded-modern-white-cane-brings-navigationassistance-21st-century. Accessed 11 Oct. 2021.

105 “What is AT?” Assistive Technology Industry Association, https://www.atia.org/home/at-resources/what-is-at/. 

Accessed 30 Mar. 2022.

106 Morin, Amanda. “Checklist: What to Consider When Looking at Assistive Technology.” Understood, https://

www.understood.org/en/articles/checklist-what-to-consider-when-looking-at-assistive-technology. Accessed 

30 Mar. 2022.

107 “What is AT?” Assistive Technology Industry Association, https://www.atia.org/home/at-resources/what-is-at/. 

Accessed 30 Mar. 2022.

108 “Consumer and Public Information.” The Rehabilitation Engineering and Assistive Technology Society of North 

America, https://www.resna.org/About/Consumer-and-Public-Information. Accessed 28 June 2021.

109 “What Funding Assistance is Available for Individuals with Disabilities to Purchase Assistive Devices, Rams, 

etc.?” ADA National Network, March 2022, https://adata.org/faq/what-funding-assistance-available-individualsdisabilities-purchase-assistive-devices-ramps-etc. Accessed 30 Mar. 2022.

110 “What is AT?” Assistive Technology Industry Association, https://www.atia.org/home/at-resources/what-is-at/. 

Accessed 30 Mar. 2022.

111 “Consumer and Public Information.” The Rehabilitation Engineering and Assistive Technology Society of North 

America, https://www.resna.org/About/Consumer-and-Public-Information. Accessed 28 June 2021.

112 U.S. Department of Health and Human Services, Administration for Community Living.

113 “P&A Programs” https://acl.gov/programs/pa-programs Accessed 12 September 2022.

234 National Council on Disability/National Indian Council on Aging
114 Intraregional Tribal Transportation Strategy. San Diego Association of Governments / Southern California Tribal 

Chairmen’s Association, Jan. 2018, https://www.sandag.org/uploads/publicationid/publicationid_4480_23377.

pdf. Accessed 28 Oct. 2021.

115 Understanding Disabilities in American Indian and Alaska Native Communities Toolkit Guide. The University of 

Montana, Rural Institute on Disabilities, American Indian Disability Technical Assistance Center, 2003. https://

ncd.gov/publications/2003/aug12003. Accessed 22 Oct. 2021. The Resource book is no longer available.

116 North Dakota State University, Upper Great Plains Transportation Institute, Small Urban and Rural Center on 

Mobility, https://www.ugpti.org/surcom/resources/transportation-glossary.php?viewAll=1. Accessed 28 Sept. 

2021.

117 “Apache Transportation.” San Carlos Apache Tribe Nnee Bich’o Nii Services, 2021, http://scat-tanf.org/transit/. 

Accessed 25 Oct. 2021.

118 The Cherokee Nation, Department of Transportation & Infrastructure. “Cherokee Nation Transit.” https://transit.

cherokee.org/. Accessed 23 Aug. 2021.

119 Crossing Great Divides: A Guide to Elder Mobility Resources and Solutions in Indian Country. National Aging 

and Disability Transportation Center, https://www.nadtc.org/resources-publications/resource/crossing-greatdivides-a-guide-to-elder-mobility-resources-and-solutions-in-indian-country/. Accessed 1 Oct. 2021.

120 Pelivan Transit. “The Pelivan Story.” https://www.pelivantransit.org/the-pelivan-story. Accessed 23 Aug. 2021.

121 “Rural Transportation System of the Year.” Community Transportation Association of America, https://ctaa.org/

system-of-the-year/. Accessed 1 Oct. 2021.

122 “Tribal Transit in Maine.” Community Transportation Reader, Community Transportation Association of 

America, https://ctaa.org/aroostook-band-of-micmac-indians/. Accessed 21 Apr. 2022.

123 U.S. Department of Transportation, Federal Transit Administration, National Rural Transit Assistance Program. 

“Tribal Transportation Issues and Successful Models.” Mar. 2022, https://irp.cdn-website.com/270961f6/files/

uploaded/NRTAP Tribal Transportation Issues and Successful Models Tech Brief Published March 2022.pdf. 

Accessed 21 Apr. 2022.

124 North Dakota State University, Upper Great Plains Transportation Institute, Small Urban and Rural Center on 

Mobility, https://www.ugpti.org/surcom/resources/transportation-glossary.php?viewAll=1. Accessed. 28 Sept. 2021.

125 U.S. Department of Transportation, Federal Transit Administration. “FTA Civil Rights / ADA Programs and 

Requirements for Indian Tribes Fact Sheet.” 28 Sept. 2021, https://www.transit.dot.gov/sites/fta.dot.gov/

files/2021-09/Civil-Rights-ADA-Reqs-for-Tribes-Fact-Sheet_0.pdf. Accessed 21 Apr. 2022.

126 “American Indian Vocational Rehabilitation Services.” Code of Federal Regulations, 34 C.F.R., Subtitle B, Ch. III, 

Part 371, 20 Apr. 2022, https://www.ecfr.gov/current/title-34/subtitle-B/chapter-III/part-371. Accessed 23 Apr. 

2022.

127 “Beneficiary Travel and Special Mode Transportation.” Code of Federal Regulations, 38 C.F.R., Ch. I, Part 70, 

11 Apr. 2022. https://www.ecfr.gov/current/title-38/chapter-I/part-70/subpart-A. Accessed 23 Apr. 2022.

128 “Bipartisan Bill Renews Effort to Strengthen Tribal Transportation Infrastructure.” Indian Country Today, 

24 Feb. 2021, https://indiancountrytoday.com/the-press-pool/bipartisan-bill-renews-effort-to-strengthen-tribaltransportation-infrastructure. Accessed 22 Apr. 2022.

129 “RE: Infrastructure Legislative Proposal.” National Congress of American Indians et. al., 13 Apr. 2021, https://

ncai.org/NCAI_Indian_Country_Infrastructure_Letter_-FINAL_Update-.pdf. Accessed 25 Oct. 2021.

130 United States, Congress. “H.R.3802: To Make Permanent the Authority of the Secretary of Veterans Affairs 

to Make Grants for the Transportation of Highly Rural Veterans to Medical Care.” Congress.gov, 7 July 2021. 

https://www.congress.gov/bill/117th-congress/house-bill/3802?s=1&r=50. Accessed 23 Apr. 2022.

131 ———, Federal Transit Administration, National Aging and Disability Transportation Center. “2018 

Transportation Trends: Non-Emergency Medical Transportation Brokerages and Benefits of Coordination.” July 

2019, https://www.nadtc.org/wp-content/uploads/NADTC-Topic-Spotlight-NEMT-Brokerages-and-Benefits-forweb-7-22-2019-1-1.pdf. Accessed 23 Apr. 2022.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 235
132 ———,———, National Rural Transit Assistance Program. “Tribal Transportation Issues and Successful 

Models.” Mar. 2022, https://irp.cdn-website.com/270961f6/files/uploaded/NRTAP Tribal Transportation Issues 

and Successful Models Tech Brief Published March 2022.pdf. Accessed 21 Apr. 2022.

133 ———,———,———. “Head Start Program: Transportation in Rural Areas.” Mar. 2020, https://www.transit

.dot.gov/sites/fta.dot.gov/files/docs/regulations-and-programs/ccam/about/147016/head-start-programtransportation-rural-areas.pdf. Accessed 23 Apr. 2022.

134 ———, The White House. Building a Better America: A Guidebook to the Bipartisan Infrastructure Law for 

State, Local, Tribal, and Territorial Governments, and Other Partners. 31 Jan. 2022. https://www.whitehouse

.gov/wp-content/uploads/2022/01/BUILDING-A-BETTER-AMERICA_FINAL.pdf. Accessed 22 Apr. 2022.

135 U.S. Department of Health and Human Services, Administration for Community Living. “Older Americans 

Act.” https://acl.gov/about-acl/authorizing-statutes/older-americans-act. Accessed 19 Aug. 2021.

136 Benally, Hoskie. “17th Annual Indian Disability Summit—Session Two.” YouTube, https://youtu.be/6MAGhtFjtB0. 

Accessed 28 July 2021.

137 ———. Chair of the Navajo Advisory Council on Disabilities 46:22. Native American Disabilities Law Center, 

15 Apr. 2021.

138 and Governmental Liaison with the Native American Disability Law Center. Personal Interview. 3 Aug. 2021.

139 “Open Doors: Accessibility of Public Buildings on the Navajo Nation.” The Native American Disability Law 

Center, 2011, https://www.nativedisabilitylaw.org/resources/item/183-opening-doors-accessibility-of-publicbuildings-on-the-navajo-nation.

140 Pindus, Nancy et.al. “Housing Needs of American Indians and Alaska Natives in Tribal Areas: A Report from 

the Assessment of American Indian, Alaska Native, and Native Hawaiian Housing Needs.” U.S. Department of 

Housing and Urban Development, Office of Policy Development and Research, 19 Jan. 2017, https://www

.huduser.gov/portal/publications/HNAIHousingNeeds.html. Accessed 5 Oct. 2021.

141 Romero, Simon. “Navajo Nation Becomes Largest Tribe in U.S. After Pandemic Enrollment Surge.” The New 

York Times, 21 May 2021, https://www.nytimes.com/2021/05/21/us/navajo-cherokee-population.html.

142 Shebala, Marley. “Making Public Buildings on Navajo Reservation Accessible to the Disabled.” Marley Shebala’s 

Notebook: Keeping an Eye on Navajo Government, 2014, http://www.dineresourcesandinfocenter.org/makingpublic-buildings-on-navajo-reservation-accessible-to-the-disabled/.

143 U.S. Census Bureau. “Race and Ethnicity in the United States: 2010 Census and 2020 Census.” 12 Aug. 2021, 

https://www.census.gov/library/visualizations/interactive/race-and-ethnicity-in-the-united-state-2010-and-2020-

census.html. Accessed 5 Oct. 2021.

144 U.S. Department of Health and Human Services, Administration for Community Living and the Administration 

on Aging. “Profile of American Indians and Alaska Natives Age 65 and Older.” 2017, https://acl.gov/sites/

default/files/Aging and Disability in America/2017OAProfileAIAN508.pdf. Accessed 15 Apr. 2022.

145 ———, Centers for Disease Control and Prevention. “Adults with Disabilities: Ethnicity and Race.” 16 Sept. 

2020. https://www.cdc.gov/ncbddd/disabilityandhealth/materials/infographic-disabilities-ethnicity-race.html. 

Accessed 2 July 2021.

146 Villarroela, Maria A., et.al. “Health of American Indian and Alaska Native Adults, by Urbanization Level: United 

States, 2014–18.” Centers for Disease Control and Prevention, National Center for Health Statistics, Data 

Brief, no. 372, Aug. 2020, https://www.cdc.gov/nchs/products/databriefs/db372.htm - ref2. Accessed 2022.

147 City of San Antonio. “Universal Housing Design.” https://www.sanantonio.gov/DAO/ADADesign/

UniversalHousingDesign. Accessed 26 July 2021.

148 City of San Antonio Neighborhood and Housing Services Department. “Design Guidelines and Construction 

Standards for New, Single-Family Affordable Housing Developments.” Dec. 2019, https://www.sanantonio.

gov/Portals/0/Files/NHSD/OurSA/2020 Guidelines for New Construction.pdf?ver=2019-12-19-135230-023. 

Accessed 26 July 2021.

149 “The 7 Principles.” National Disability Authority, Centre for Excellence in Universal Design. https://universaldesign

.ie/what-is-universal-design/the-7-principles/. Accessed 18 Apr. 2022.

236 National Council on Disability/National Indian Council on Aging
150 Center for Universal Design. “Universal Design In Housing.” Center for Universal Design NCSU - Home, North 

Carolina State University, Jan. 2006, https://projects.ncsu.edu/ncsu/design/cud/.

151 “How Much Does It Cost to Remodel for Disability Accommodation?” Home Advisor, https://www.homeadvisor

.com/cost/environmental-safety/remodel-for-disability-accommodation/. Accessed 22 July 2021.

152 Understanding Disabilities in American Indian and Alaska Native Communities Toolkit Guide. The University 

of Montana, Rural Institute on Disabilities, American Indian Disability Technical Assistance Center, 2003. 

https://ncd.gov/publications/2003/aug12003. Accessed 22 Oct. 2021. The Resource book is no longer 

available.

153 “Visitability: Basic Access to Homes.” Visitability, https://visitability.org/. Accessed 6 July 2021.

154 Crouse, Tripp J. “Senate Committee on Indian Affairs Passes Senate NAHASDA Reauthorization Out of 

Committee.” KNBA 90.3 FM, 21 Feb. 2022, https://www.knba.org/news/2022-02-21/senate-committee-onindian-affairs-passes-senate-nahasda-reauthorization-out-of-committee. Accessed 19 Apr. 2022.

155 Kunesh, Patrice H. “The Significance of Belonging for Indigenous Peoples: The Power of Place and People—

Creating a Vision for Community in Indian Country Through Self-Governance and Self-Determination.” Journal 

of Affordable Housing & Community Development Law, vol. 30, no. 1., 2021, https://www.americanbar.org/

content/dam/aba/publications/journal_of_affordable_housing/affordablehousing-may21.pdf. Accessed 20 Apr. 

2022.

156 “NAHASDA Reauthorization Reintroduced in Senate.” National Low Income Housing Coalition, 2021, https://

nlihc.org/resource/nahasda-reauthorization-reintroduced-senate.

157 Pierson, Brian. “2020 Indian Housing Development Handbook.” National American Indian Housing Council, 

https://naihc.net/wp-content/uploads/2019/12/Indian-Housing-Development-Handbook-2020-Single-Page.pdf. 

Accessed 19 Apr. 2020.

158 Pindus, Nancy et.al. “Housing Needs of American Indians and Alaska Natives in Tribal Areas: A Report from 

the Assessment of American Indian, Alaska Native, and Native Hawaiian Housing Needs.” U.S. Department of 

Housing and Urban Development, Office of Policy Development and Research, 19 Jan. 2017, https://www

.huduser.gov/portal/publications/HNAIHousingNeeds.html. Accessed 5 Oct. 2021.

159 “Programs.” Hopi Tribal Housing Authority, https://htha.org/programs. Accessed 20 Apr. 2022.

160 U.S. Department of Housing and Urban Development. “Section 4 Capacity Building for Community 

Development and Affordable Housing Program.” HUD Exchange, https://www.hudexchange.info/programs/

section-4-capacity-building/. Accessed 20 Apr. 2022.

161 ———, Office of Policy Development and Research. “Assessment of American Indian, Alaska Native and 

Native Hawaiian Housing Needs: Briefing on Study Findings.” 2017, https://www.huduser.gov/portal/sites/

default/files/pdf/Final-Presentation.pdf.

162 U.S. Department of the Interior, Indian Affairs. “Hearth Act Leasing.” https://www.bia.gov/service/hearthleasing - :~:text=The Helping Expedite and Advance,415. Accessed 20 Apr. 2022.

163 Kapp, Beth. “Karuk Tribe Wins Low Income Housing Tax Credit Award to Build 30 New Homes.” Travois, 

18 June 2015. https://travois.com/articles/karuk-tribe-wins-low-income-housing-tax-credit-award-build-30-newhomes/. Accessed 21 Apr. 2022.

164 Norwood, Adrienne. “Section 4 Funding Supports Housing for Seniors and Native American Veterans.” 

Enterprise Blog, 28 Feb. 2020, https://www.enterprisecommunity.org/blog/section-4-funding-supportshousing-seniors-and-native-american-veterans. Accessed 23 July 2021.

165 Pindus, Nancy et.al. “Housing Needs of American Indians and Alaska Natives in Tribal Areas: A Report from 

the Assessment of American Indian, Alaska Native, and Native Hawaiian Housing Needs.” U.S. Department 

of Housing and Urban Development, Office of Policy Development and Research. 19 Jan. 2017. https://www

.huduser.gov/portal/publications/HNAIHousingNeeds.html. Accessed 5 Oct. 2021.

166 U.S. Department of Agriculture, Rural Development and Innovation Center. “USDA Rural Development 

Investments Benefitting American Indian/Alaska Native Communities.” 2019, https://www.rd.usda.gov/

files/508_RD_TribalReport_2019.pdf.

Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide 237
167 “Architectural Barriers Act (ABA) of 1968.” U.S. Access Board, https://www.access-board.gov/law/aba.html. 

Accessed 4 Oct. 2002.

168 Pierson, Brian. “2020 Indian Housing Development Handbook.” National American Indian Housing Council, 

https://naihc.net/wp-content/uploads/2019/12/Indian-Housing-Development-Handbook-2020-Single-Page.pdf. 

Accessed 19 Apr. 2020.

169 U.S. Department of Housing and Urban Development, Office of Policy Development and Research. 

“Assessment of American Indian, Alaska Native and Native Hawaiian Housing Needs: Briefing on Study 

Findings.” 2017, https://www.huduser.gov/portal/sites/default/files/pdf/Final-Presentation.pdf.

170 “What is NAHASDA?” National Association of Housing and Redevelopment Officials, https://www.nahro.org/

wp-content/uploads/2020/04/NAHASDA_One-Pager.pdf. Accessed 26 July 2021.

171 Yazzie, Annette. “17th Annual Indian Disability Summit—Session Two.” YouTube, 46:22, Native American 

Disabilities Law Center, 15 Apr. 2021, https://youtu.be/6MAGhtFjtB0. Accessed 26 July 2021.

172 American Indian and Alaska Native Grandfamilies: Helping Children Thrive Through Connection to Family and 

Cultural Identity. Generations United and National Indian Child Welfare Association, 2020, https://www.nicwa

.org/wpcontent/uploads/2020/07/AIAN-Toolkit-WEB.pdf, Accessed 7 September 2022.

173 Minnesota Department of Administration, Governor’s Council on Developmental Disabilities. “Parallels in 

Time: A History of Developmental Disabilities.” https://mn.gov/mnddc/parallels/seven/7c/1.html. Accessed 

22 Feb. 2022.

174 Shoultz, Bonnie. “More Thoughts on Self-Advocacy: The Movement, the Group, and the Individual.” Syracuse 

University, The Center on Human Policy, 2002, https://thechp.syr.edu/more-thoughts-on-self-advocacy-themovement-the-group-and-the-individual/. Accessed 22 Feb. 2022.

175 “Types of Advocacy.” West Virginia University Center for Excellence in Disabilities, https://cedwvu.org/

resources/types-of-advocacy/. Accessed 22 Feb. 2022.

176 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, the Division of 

Human Development and Disability. “Become a Disability A.L.L.Y. in Your Community and Promote Inclusion.” 

26 July 2021. https://www.cdc.gov/ncbddd/humandevelopment/become-a-disability-ALLY.html. Accessed 

22 Feb. 2022.

177 Brown, Jennifer. “How Advocates for Inclusion Keep from Burning Out.” Berrett-Koehler Publishers Blog, 

2 Sept. 2020, https://ideas.bkconnection.com/how-advocates-for-inclusion-keep-from-burning-out.

178 Young, Lindsey [@Lindss_tastic]. Twitter, 30 May 2020, https://twitter.com/lindss_tastic/

status/1266763433560756225?lang=en. Accessed 9 Nov. 2021.

179 “What is systemic advocacy?’ Office of the Public Advocate, Accessed 7 September 2022, https://www.justice

.qld.gov.au/public-advocate/about-the-public-advocate/what-is-systemic-advocacy. Accessed 5 Nov. 2021.

180 “System Change Advocacy.” Community Access Center, https://ilcac.org/system-change-advocacy/. Accessed 

13 Apr. 2022.

181 Disability Etiquette. United Spinal Association, 2015, https://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf. 

Accessed 29 Mar. 2022.

182 San Antonio, Department of Public Works, Disability Access Office. Disability Etiquette Handbook. Jan. 2011, 

https://www.sanantonio.gov/Portals/0/Files/DAO/DisabilityEtiquetteHandbook.pdf. Accessed Mar. 2022.

238 National Council on Disability/National Indian Council on Aging
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004