National Council on Disability Summary of the 

Native American Forum: “Disability Matters in Tribal Communities” 

When the National Council on Disability (NCD) invited public participation in the Native 

American Forum (Native Forum) held April 15, 2004 at the Santa Ana Pueblo Hyatt Regency 

Tamaya Hotel and Resort near Bernalillo, New Mexico, the purpose was to provide a dialogue 

opportunity for learning about issues and concerns linked to federal policy. In his delivery of the 

charge to forum discussion groups, NCD’s Cultural Diversity Advisory Committee Liaison, 

Milton Aponte indicated that the Native Forum was less about one size fits all solutions and 

“more about trying to obtain authentic perspectives from [the participants].” NCD wanted to 

learn directly from people with disabilities, their families, other advocates, tribal and state 

leaders, service providers and other disability professionals. 

Background: From an historical point of view, the Native Forum was aligned with NCD’s 

record of broad and inclusive outreach to unserved and underserved people at the grassroots 

level. Building upon its work during the past 14 years with people across the full spectrum of 

disabilities, NCD recognized an abundance of matters impacting daily living that need to be 

addressed in Indian Country. The forum focused on a select few—education, health care, 

vocational rehabilitation, and independent living—as initial areas for discussion based in part on 

findings in NCD’s report, People with Disabilities on Tribal Lands.

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Participants: The participant list included people who paint the multi-ethnic landscapes of New 

Mexico and nearby Arizona, as well as California. People self-identified as self-advocates, 

family members, service providers, representatives of public and private entities such as local, 

state, tribal, and federal governments, businesses, and organizations serving people with 

disabilities. More than 120 native and non-native participants were counted—three quarters were 

pre-registered. This was the first time that NCD conducted a forum in a tribal community. 

Months of planning with a cohort of cross-cultural volunteers resulted in pre/post forum and 

onsite input by people from various indigenous cultures. Included at various points were 

members of Laguna Pueblo, Acoma Tribe, Eastern Band Cherokee, Prairie Band Potawatomi 

Nation, Nakota, Santee Sioux, Turtle Mountain, Chippewa-Cree, Sandia Pueblo, Santa Ana 

Pueblo, Zia Pueblo, Dine’/Navajo Nation, San Felipe Pueblo, Santa Domingo Pueblo, Jemez 

Pueblo, Zuni Pueblo, Hopi Nation, Apache Nation, Nez Perce Nation, and Isleta Pueblo. 

Proceedings: At the start of the half-day gathering, NCD Council member Kathy Martinez told 

participants that her family was from Tierra Armarilla, as she conducted the general opening 

session. Between a cultural welcome by Santa Ana Pueblo member, Mr. Gino Lujan, and 

comments by Treva Roanhorse,ii on behalf of American Indians and Alaska Natives across the 

country, Chairperson Lex Frieden provided an official welcome. He stated, “We are ever mindful 

of the fact that we live in a nation with many diverse cultures; and despite this reality, sometimes 

people in the United States forget about the Indian Nations." He also emphasized NCD’s interest 

in learning from the participants what the agency can do in its “role of advising the President and 

Congress to make life better, to make opportunities, and to ensure independent living for all 

people, including Native American people.” 
The framework for group discussioniii focused on three guiding questions: (1) What seems to be 

working well for whom and why? (2) What changes would you suggest to address challenges or 

barriers to other things not working as well? and (3) What are some of the key issues that NCD 

and/or DC-based representatives from tribal communities (spokespersons) need to bring to the 

attention of federal policy makers on behalf of people in Indian Country and how would you 

prioritize the issues? 

Participants convened in two assigned groups that included NCD Council members. Discussion 

leaders encouraged participants to share not only their perceptions of promising practices, but 

also their personal or family member experiences with government-funded services, programs, 

policies and practices. The reality of time constraints and a need for flexibility were apparent 

early and would characterize the morning. Accomplishments of the forum included: (1) NCD’s 

raised awareness about longer timeframes for future dialogue and (2) NCD’s provision of an 

environment supportive of people engaging in dialogue and exchanging candid perspectives on 

disability matters that influence public policy decisions. 

Key Messages: The group discussions generated descriptions of issues, personal stories, and 

perceptions of actions needed. Many of the unmet needs that are identified in NCD’s People 

with Disabilities on Tribal Lands report were reaffirmed when forum participants shared their 

perceptions of promising practices, as well as unmet challenges and needs. 

Promising Practices: Improve methods and efforts of evaluating and capitalizing upon what 

seems to be working in order to compile evidence-based data, and in this regard take note of 

changes that begin in small steps. The forum participants identified examples that were focused 

on opportunities for policy and decision-making. This was consistent with NCD’s findings in its 

earlier report. For example: 

• Several participants identified efforts that New Mexico state level bodies have 

undertaken to build on the notion of greater inclusion of Native Americans on state health 

department committees, and as one person described: . . . “they are getting what I would 

consider true representations of the state on those committees”. . . 

• In the words of one participant: I think in the state of New Mexico right now, one good 

thing that’s happened with our governor is that he put a lot of Native Americans on a lot of 

the [state] councils, and task forces, and boards here in the state, so that he can actually get 

the grass roots input.” 

• “In New Mexico we have a Department of Indian Affairs and that’s a cabinet level. 

Some of the Health and Human Services Departments have tribal liaisons that work at the 

secretary level or division levels, like I do.” 

• “Laguna Pueblo has a really neat skilled nursing facility . . . but it is one of the few 

[where people can stay in their communities for long-term care]. . .” 

• Across Indian Country we have “ a lot of neighbors helping neighbors . . . that goes 

unrecognized . . .It would be helpful to have support for these folks, perhaps a type of 

ombudsman serving as liaison for homebound or medically fragile people. . .” 

• Forum participants also indicated that New Mexico state level special education bodies 

had a pretty long track record of including among stakeholders on coalitions and advisory 

groups people that show the multi-ethnic make-up of the state, including the prominence of 

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people from various pueblos, tribes, and nations. Nonetheless, smooth and effective 

transition from school to post school life was identified among the remaining challenges 

and needs for people in Indian Country. 

Challenges And Needs: The perceived conditions and actions needed at the federal, state, tribal, 

and/or local level included, yet were not limited to three “needs” categories—Awareness, 

Outreach, and Funding. The discussion highlights are summarized as follows: 

1. Awareness Needs: Raise non-native public, program staff and service provider awareness 

about cultural responsiveness and tribal government awareness about disability matters in ways 

that encourage inclusion in tribal plans and agendas. 

• Dispel and move beyond some of the myths that have shaped attitudes of apathy. For 

example, it is a fact that like other workers in this country, American Indians and Alaska 

Natives have the same income taxes withheld from their paychecks and pay taxes on 

purchases made. As one participant put aside the myth about government issued checks 

and pick-up trucks, she indicated that like other people in Indian Country . . .“ I never got 

mine [referring to the monthly check myth] . . . and the brand new pickup. Who’s got a 

brand new pickup? There are many things like that...that are misunderstandings . . . that 

really, really bother us . . .they keep us from getting to the [factual] issues like bad roads,

and the health issues, and employment, and long-term care, and Social Security reform. . 

.impacts on our people. . . Just the whole independent living, or interdependent living, as 

some called it today.” 

• Several consumers with disabilities, and providers said that “you must understand 

culture to work [effectively] with Native Americans on reservations and in Alaska villages 

. . .be creative to get services on reservations . . .combine new and traditional [strategies] to 

raise spirits.” 

• A forum participant with a state run Client Assistance Program told NCD about the 

need for consumer education and training programs in Native American languages and 

cultures to encourage self-concept of people with disabilities. “Sometimes when they are 

not taken away to rehab programs in long term facilities [outcomes are better] when 

involved in traditional activities and extended families [in their own communities].” 

• A native parent of children with disabilities said, “Tribal governments need to 

understand disability issues.” 

• A Family Voices participant who works with Native American tribes across the 

country shared a finding that often to native elders “disability is understood as alcoholism 

and drug addiction.” 

• As one of several state level officials and government level representatives in 

attendance, a New Mexico state Department of Health official stated near the start of the 

discussions, “Understanding that there continue to be barriers, and obstacles that need to be 

overcome, it is pleasing to see that we are all here together to try to work out some of those 

difficulties and I’m here to listen and take your information back.” 

2. Outreach Needs: Establish standards for meaningful outreach efforts aimed at increasing 

consumer awareness of services and programs and make them available where consumers are 

located to address consumer and service provider concerns. In addition, Native Americans are 

needed on national level committees, councils, review teams, boards, and other decision-making 

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bodies, as are other people from diverse communities. In response to the lack of Native 

American representation on NCD, information was shared on Council members being appointed 

by the President and confirmed by the Senate; thus, the Council itself would not be the 

appropriate body to make any changes in who is appointed. Forum participants indicated a place 

for any inquiry to begin might be the White House Domestic Policy Council. Comments on other 

outreach included . . . 

• “People want services where they live . . . 

• “We need a compiled list of available resources . . .” 

• Many people with disabilities who were sent to live in urban locations in order to get 

services want to reconnect with their families and communities . . . however, there are 

more services in urban settings and often no services on tribal land . . . ” 

• At the national level, “a good thing is that the Centers for Medicaid and Medicare have 

Native American contacts . . . and they do also have one who is headquartered in Baltimore 

and that’s a start [with Native representation]” 

• “Many people with disabilities, and elders don’t ask for help anymore, because there is 

no service and no assistance in rural areas . . . many have inaccessible housing and have 

difficulty getting into their own homes...so they don’t go out . . .” 

3. Funding Needs: Provide adequate resources and flexibility to remedy deficient funding 

streams for state and federal disability services and programs, as well as Indian Health 

Service (IHS). Consumers and providers told NCD . . . 

• “IHS is not adequately funded . . . and needs reform . . . a good thing is that we have 

IHS on reservations or nearby, yet the bad thing is that their funds have been cut so they 

cannot provide the services we need either for people with special needs or for the general 

population of people in Indian Country.” 

• “IHS has a lot of unfunded mandates, and what happened is, they have to work within 

a certain budget [with no increases] and finding out, what can we take away?” 

• State cuts in Medicaid have negative impact on people with disabilities and older 

people in native communities . . . older [people with disabilities] need legal assistance

• “Tribal communities don’t have special education and related service providers the 

children need . . . no incentives that attract providers to work—in under funded locations” 

• A parent advocate told how lack of funding had an unfavorable impact on people 

leaving developmental disability institutions: . . .“none of my Native American clients 

actually went home. They went to border towns because there were residential placements 

on or near their reservation . . .their ability to be taught their native skills in their native 

language was lost.” Similarly an art teacher stated about his client/students . . . “they 

hunger for connection to their tribes, to their own homes. They are in an urban setting. 

They have been taken away from the tribe because we don’t have the facilities to help them

stay there on the reservations . . . Native Americans are very tight with their roots and their 

family.” 

• “We need people to bring attention to Senate Bill 556 that looks at creative services 

under the Indian Health Care Improvement Act.” 

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Conclusion: NCD was able to communicate with people who came together from an array of 

backgrounds for a time on Native American land to begin a dialogue. The Native Forum

succeeded in providing Council members with perspectives directly from authentic stakeholders 

in Indian Country. Overall, the information supports NCD’s ongoing efforts that refocus 

attention on outreach and more inclusive practices and that incorporate authentic representation 

of underserved groups in the broader disability and public policy arena. Comments from a 

family member and an NCD Council member near the closing of the group discussion time are 

also fitting points for closing this summary paper. 

Family member: “I have a disabled brother who is sitting next to me and a mother who is a 

double amputee. She is now in a nursing home because we are not able to care for her or provide 

the services to her. I’m just wanting to express that we have a lot of government agencies and 

different resources available our there for us nationally, but what about the little bitty 

communities and our villages . . . we also need a lot of people who are very educated to help us 

understand some of these available resources to us in plain language that we can understand.” 

Council member (Joel Kahn): “I’m hearing a lot of commonality and a lot of differences . . . 

commonality that service providers have across the United States with rural areas, roads, and so 

forth . . . unique needs [related to] Social Security reimbursement issues, needs around the 

cultural language issue and then services delivered in languages that are understood by the 

population . . . This has been very informative to me, because it has provided emphasis on some

of the common problems that we are working on, one of which is rural service delivery. But it 

also put emphasis on some problems that I was not aware of, like the language issue and the 

Social Security reimbursement issue, and I know someone is going to wrap up other than me, but 

I’d like to personally than you for informing me this morning. Thank you.” 

Readers of this summary paper may also find that some of the revelations and needs participants 

identified during the Native Forum can stimulate further dialogue and actions among appropriate 

parties at the state, tribal, and federal levels. 

 

i

The August 2003 NCD report addresses the status of service and support systems and documents 

significant unmet needs facing American Indians and Alaska Natives with disabilities. The report is 

supplemented with a toolkit guide, Understanding Disabilities in American Indian and Alaska Native 

Communities: Toolkit Guide that provides resource information for consumers, tribal communities, and 

local, state and federal personnel. 

ii The president of Consortia of Administrators for Native American Rehabilitation (CANAR) shared 

highlights from the national policy positions of the organization that also includes state agencies, 

consumers, parents, and others across the country representing more than 80 member who manage 69 

tribal rehabilitation projects (also known as the 121 projects) serving Native American people with an 

employment outcome. 

 

iii Acknowledgements: NCD expresses appreciation for the assistance of two groups of 

volunteers. Native discussion leaders, Dr. Carol Locust (Eastern Band Cherokee-AZ), Ms. 

Martha J. Gorospe-Charlie (Laguna Pueblo-NM), and Dr. Marilyn Johnson (Acoma Tribe-NM) 

worked with NCD staff to plan and implement the forum discussion groups. From the

Independent Living Resource Center of Albuquerque, NM volunteers, Ms. Carla Baron and Ms. 

Judith Rogers provided preliminary planning support, as well as onsite written highlights from

the workgroups 

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