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Summary of the Native American Forum: "Disability
Matters in Tribal Communities" National
Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
Lex Frieden, Chairperson
June 21, 2004
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.
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,
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 discussion 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 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 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.”
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.
iThe 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.
iiThe 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.
iiiAcknowledgements:
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 |