A
Profile of Independent Living Services for American Indians
with Disabilities Living on Reservations
Julie Anna Clay
The University of Montana Rural Institute 1992
Abstract: Little is known about Independent Living Center services for Native Americans with disabilities. Two hundred thirty-one Independent Living Centers (ILCs) serving rural areas that might encompass Indian land received questionnaires focusing on ILC services for Indians with disabilities, available funding sources, and ILC/reservation community relationships.
Results suggest that as many as one-third of the nation's 278 federal and state reservations are served by ILCs, but that service is minimal and insensitive to cultural issues. The demand for ILC services by rural Indian people with disabilities whose needs are barely being met is discussed. This issue should be addressed by ILCs and Tribal governments.
Independent Living Center Services for American Indians with Disabilities Living on Reservations
The independent living movement spawned a service system of Independent Living Centers to serve people with disabilities. As defined by Richards (1986), "An independent living program is a community-based program which has substantial consumer involvement and provides services which assist disabled people in increasing their self-determination and in minimizing unnecessary dependence on others." The purpose of ILCs is to increase options for people with disabilities within their own communities. These centers developed to provide core services, such as independent living skills training, information and referral, advocacy, and peer counseling. Some ILCs also offer personal services, such as: attendant training and referral, reader and interpreter referral, community awareness programs, and housing assistance. Other services provided depend on the needs of the consumer and the availability of community resources.
In 1978, Congress amended the Rehabilitation act of 1973 to include Title VII, to implement a national independent living program. By 1979, only Part B of Title VII had been funded to establish ILCs, but in 1986, Part A was funded to assist states in providing additional services to meet independent living needs (Nosek, 1992; Seekins, Ravesloot, & Maffit, 1992). Funding to operate ILCs has increased from two million dollars in 1979 for ten ILCs to twenty-nine million in 1992 for 144 programs (Nelson, 1992).
An implied goal is to make ILC services universally accessible (Seekins, et al, 1992). Since Independent Living Centers emerged in the early 1970s, the number has grown from 52 in 1977 to more than 400 in 1988 (Nosek, Zhu, and Howland, 1992). Much of the funding for these additional programs has come from a variety of sources, (Seekins, et al). While these programs have been initiated in most metropolitan areas, they reached fewer than 30% of rural US counties (Seekins, Jackson, Dingham, 1991).
Marshall,
Johnson, Williams, Saravanabhavan, & Bradford (1992) indicate that the
distribution of ILC services is of concern to rehabilitation agencies, including
the National Council on Disabilities, and the US Department of Education,
Rehabilitation Services Administration. Significantly, there is a lack of
information about ILC services to various sectors of the population, such as
Indians with disabilities living on reservations. Clay, (1992) introduced the
need for ILC Services for American Indians and compares and contrasts several
ILC standards, with American Indian cultural beliefs. This analysis suggested a
pattern of interrelationships between the philosophy of independent living,
tribal culture, and government.
Most reservations are located in rural areas (e.g. the closest "metropolitan"
area to the Northern Cheyenne Reservation in southeast Montana is over 100 miles
away.) A total of 1,948,377 American Indians and Alaskan Natives live in the US
(1990, Census Bureau). Of these, 685,464 (35%) live in areas governed by tribes
(i.e. reservations). The rest live outside American Indian-governed areas.
Economic and social conditions on reservations are a central concern. The average income for a family of four living on a reservation in 1979 was approximately $13,700. The percentage of high school graduates among all American Indians 25 years and older was 55% for American Indians, 44.3% for Eskimos, and 58.4% for Aleuts (US Dept of Education, 1987). The Bureau of Indian Affairs (1987) reported an employment rate of 38% for the Indian population living on or near reservations.
In the three-year period from 1980 through 1982, 37% of
deaths among Indians were 45 years of age or younger. In the general US
population, 12% of deaths occurred within this age group. Excess deaths (the
difference between observed rates and the rate within the white population)
among American Indians accounted for 87% of the deaths before age 45. The
leading causes of these deaths were: unintentional injuries, cirrhosis,
homicide, suicide, pneumonia, and diabetes (US Dept. of Education, 1987).
Because of the poor living conditions and barriers found on the reservation,
there are few opportunities to fulfill goals. Economic, legislative, political,
social, historical, and cultural constraints forced on the people living within
the reservation boundaries make life tumultuous. Resources and opportunities are
scarce for the majority of people living on tribal lands and the barriers are
increased for individuals with disabilities.
The purpose of this study was to assess the level of availability of Independent
Living Services on American Indian reservations, historic land, trust land, and
Alaskan villages by surveying Independent Living Centers (ILCs), that might have
tribal land within their service area.
Method
Participants
Twenty-two states with the highest American Indian populations, according to the 1980 census, were targeted. ILC respondents in these states were selected according to their provision of services and proximity to rural areas that might have reservations or Indian land located within their service area. ILCs located in large metropolitan areas were excluded from the survey because they generally do not serve reservations, nor are they located near them. Questionnaires were sent to 223 ILCs on or near a reservation, Alaskan village, Indian trust land, or Oklahoma historical land. Table 1 presents a list of states selected, the total number of ILCs in each state, and the number of ILCs surveyed.
Table 1 Description Targeted States and ILCs Surveyed
State |
ILCs in State |
ILCs Surveyed |
|---|---|---|
Alaska |
8 |
6 |
Arizona |
5 |
5 |
California |
43 |
38 |
Connecticut |
11 |
7 |
Idaho |
8 |
6 |
Kansas |
11 |
11 |
Maine |
9 |
9 |
Michigan |
19 |
19 |
Minnesota |
12 |
4 |
Montana |
4 |
4 |
Nebraska |
4 |
4 |
New Mexico |
4 |
4 |
New York |
40 |
35 |
North Dakota |
2 |
2 |
Oklahoma |
7 |
7 |
Oregon |
13 |
13 |
South Dakota |
5 |
4 |
Texas |
17 |
5 |
Utah |
3 |
3 |
Washington |
23 |
23 |
Wisconsin |
12 |
12 |
Wyoming |
2 |
2 |
Procedure
A mail-based questionnaire was developed to gather information about the scope, content, and existence of ILC services available to people on reservations. Experts from the fields of Native American studies Tribal Vocational Rehabilitation, Sociology, and Independent Living reviewed the original survey format. This resulted in a more succinct questionnaire, as language was modified and questions added or deleted. The questionnaire was then mailed to the Directors of selected ILCs across the country. The final version consisted of a two page questionnaire with eight sections including: program information, financial assistance received and specific funding sources that directly address American Indians with disabilities, size and proximity of reservations to ILC offices, services provided (i.e. advocacy, information/referral, case management, IL skills, peer counseling, and benefits advocacy), quantity and frequency of service, relationships between the ILC and Tribal government programs, and comments.
Results
Eighty-three IL programs responded (36%). Of the
respondents, 42 (50%) were identified as actually providing services to people with
disabilities living on reservations or tribal land. Five states had four ILCs serving
reservations, two states had three, three states had two, ten states had one, and two had
zero.
Respondents reported serving 84 Indian reservations. This represents 30 percent of the 278
reservations, excluding two Alaskan villages. Those serving reservations served from one
to nine reservations, with an average of two, as Table 2 presents.
Table 2 Description ILCs Serving Reservations in Twenty-two States
| State |
# of Surveys Sent |
# of Surveys Returned |
ILCs Serving Reservations |
|---|---|---|---|
| Alaska |
6 |
1 |
1 |
Arizona |
5 |
4 |
4 |
California |
38 |
8 |
2 |
Connecticut |
7 |
1 |
1 |
Idaho |
7 |
1 |
1 |
Kansas |
11 |
4 |
0 |
Maine |
9 |
1 |
1 |
Michigan |
19 |
8 |
2 |
Minnesota |
4 |
2 |
4 |
Montana |
4 |
2 |
2 |
Nebraska |
4 |
3 |
1 |
New Mexico |
4 |
4 |
4 |
New York |
35 |
12 |
3 |
North Dakota |
2 |
1 |
1 |
Oklahoma |
7 |
4 |
3 |
Oregon |
13 |
5 |
1 |
South Dakota |
4 |
2 |
2 |
Texas |
5 |
1 |
1 |
Utah |
3 |
2 |
1 |
Washington |
23 |
4 |
4 |
Wisconsin |
12 |
6 |
4 |
Wyoming |
2 |
1 |
0 |
Independent living services are funded through various mechanisms. Several specific funding sources were listed in an "other" category to include non-traditional funding sources. Table 3 below shows the percentage of each specific funding source reported by ILCs serving reservations.
Table 3 Description Funding Sources of ILCs Serving Reservations
Funding Source |
Number Reporting |
Percentage Reporting |
|---|---|---|
Title VII Part B |
13 |
34% |
Title VII Part A |
14 |
37% |
State Funds |
20 |
49% |
Fee for Service |
20 |
49% |
Private |
10 |
24% |
City or County |
11 |
27% |
Other |
15 |
37% |
State funds and fee for service were the two most common funding sources used by ILCs. Private and city or county funds were used least often. The respondents did not specify the amount of funding received from each source.
Four (10%) of the responding ILCs received funding
specifically to address problems faced by Indians with disabilities. The average amount of
such funds reported specifically for use in serving Indians was $55,750. The range was
from $20,000 to $223,000.
The average distance from an ILC to a reservation within its service area was 59 miles.
The longest distance was 500 miles. The more reservations within an ILC service area, the
greater the average service distances reported. For example, ILCs serving one reservation
averaged a distance of 20 miles from the ILC to the reservation served; 45 miles if two
reservations were served, 70 miles if three were served, 95 miles for four reservations
served, 115 miles for five, and 140 miles if six reservations were served. One ILC was
located on the reservation it served and was funded by a federal grant to specifically
serve that reservation.
The ILCs serving reservations reported
conducting an average of four outreach visits to reservations per month. Further, they
reported serving an average of 3.5 people each visit. The most common disabilities among
Indians on reservations or tribal lands served were: spinal-cord injury, diabetes,
blindness, mobility impairment, traumatic brain injury/head injury, hearing impairment,
and orthopedic, rheumatic, and arthritic problems. The IL service provided most to Indian
people on reservations was information and referral, followed by (in decreasing
frequency): IL skills training, advocacy, wheelchairs/equipment, accessibility/home
modification, counseling, employment, housing, case management, PCA services, direct
assistance, physical restoration, home visits, and benefits counseling.
The types of ILC services offered to Indians living on reservations, trust lands, Alaskan
villages, or historic areas, and the total number of individuals served are presented in
Table 4.
Table 4 Description Service Provided and Consumers Served
Service Provided |
# of People Served |
Percentage of ILCs Providing |
People Served Annually |
|---|---|---|---|
Advocacy |
30 |
73% |
183 |
Info/referral |
33 |
81% |
250 |
Case Mgmt. |
21 |
51% |
146 |
IL Skills |
27 |
66% |
122 |
Peer Counseling |
22 |
54% |
56 |
Benefits Advocacy |
22 |
54% |
109 |
While most respondents stated that activities for Indian people with disabilities were the same as for any consumer needing IL services, other ILCs expanded on their response by describing additional activities. The following activities were listed in addition to those above: armchair aerobics and adapted aquatics for elderly persons, cooking and sewing classes for individuals with vision impairment, socializing and budgeting shills, and job-readiness classes. The ILC serving Montana's Flathead reservation offered activities specifically geared to the Indian population and lifestyle through peer counseling and secondary complication prevention classes offered.
The questionnaire's "Comments" allowed respondents to list obstacles to delivering services on reservations. The types of barriers most frequently reported are: travel limitations, inadequate funding, lack of knowledge, and lack of staff. Some problem-solving suggestions made by ILCs to overcome these barriers included: 1) advocating for additional funding to provide services to the Indian population; 2) more transportation, referral promotion, sponsoring collaborative efforts for multi-agency service provisions; 3) training for Native American service providers; 4) generating information about IL services to reservations to increase outreach; 5) building trust, 6) placing satellite offices on the reservation; and 7) training people to be peer counselors.
Discussion
This study describes the provision of Independent Living Center services to people
with disabilities living on Indian reservations in 22 states. Forty-two respondents
reported serving 84 American Indian reservations in the continental United States,
excluding the two Alaskan Native Villages serve by one state IL program. This represents
30 percent of the 278 American Indian reservations. In general, it appears that
approximately one-third of all reservations are served by ILCs in their area. These
services were provided by about 14 percent of ILCs. Given that most reservations are
located in rural areas, these findings are consistent with previous findings that only
about 30 percent of rural counties are served by ILCs (Seekins, et al, 1991).
There does not appear to be much specific funding for providing these services. Only four
respondents indicated such funding and one was an ILC funded by a Title VII, Part B grant
to a tribe. Rather, ILCs appear to use their general revenue sources to extend services to
the Indian population. Several respondents commented that this was a strain on their
already limited funds and staff, especially given the travel distances required to provide
onsite services.
Considering the limited funding, lLCs provide an amazing amount of outreach to
reservations. It is difficult to estimate the extent to which service needs are met,
however, because there are limited data on the number of Indians with disabilities or
their needs. Still, it seems reasonable to assume that many needs of these Indian people
remain unmet.
Clay (1992) states that while there are conflicts between the ILC philosophy and
the Indian culture, they might be merged to develop a model for meeting the needs of
Native Americans with disabilities, if the model recognizes the tremendous diversity
between tribes and individual American Indians. She concludes that the non-Indian's
concept of independent living differs from that of American Indians and Alaska Natives,
because of economic, political, cultural, and social factors that shape their lives, yet
there is a dearth of research on Independent Living services geared towards the needs of
American Indians with disabilities living on tribal lands. The Rehabilitation Services
Administration recognizes this problem, as reported in "A Study of the Special
Problems and Needs of American Indians with Handicaps Both On and Off the
Reservation," (US Department of Education, 1987).
The Rehabilitation Services Administration does not currently have any priority
specifically to provide IL services to American Indians. Consistent with the results of
the study, Nelson (1992) reports that the RSA does fund a number of IL projects which
provide services to a Native population.
As noted above, ILCs that serve Indian people with disabilities living on tribal lands do
so on a limited budget. Considering the distances travelled to provide IL services on
tribal lands, the service provided is substantial, but still short of the level needed.
The IL services need to be modified on a national level and funding increased to meet the
different socioeconomic and political needs of American Indians with disabilities living
on tribal lands. This could be accomplished in three ways. First, RSA should develop a
priority of funding for those ILCs which have tribal lands located within their service
area in order to ensure the provisions of services to these remote populations. The ILCs
could work with tribal individuals as liaisons for promoting cultural service delivery and
advocacy for individuals and working within the system that exists on tribal land. It
should be pointed out that advocacy for system change is a main concern of ILCs. Systems
within the tribal government may not be easily changed because of cultural and political
protection and preservation.
A second approach would be to increase the
services of tribal vocational rehabilitation projects to include independent living. The
tribal vocational rehabilitation project model has shown that set-aside programs for
Indians with disabilities can be effective and could be replicated for independent living
services aimed at this population. Unfortunately, experience has shown such set-asides are
often inadequately funded.
A third option would be to contract directly with tribal governments or organizations to
provide lL services through existing programs such as tribal housing, secondary and
postsecondary education, tribal health programs, job corps, and other employment programs.
Such an arrangement suggests a role for other agencies, including the Bureau of Indian
Affairs and the Indian Health Service.
As noted by Richards (1986), "...the more sensitive a program is to its service population and its community, the more successful it will be in: providing those services which its consumers need to live independently; understanding the services and methods of delivery of other human services agencies in its community and, therefore, being better able to make appropriate and expeditious referrals rather than to duplicate unnecessarily these services; and influencing the community to incorporate its disabled citizens in all aspects of community life." Independent living philosophy has to take into consideration the cultural, socioeconomic, and political factors inherent in minority populations, especially those of American Indians and Alaskan Natives. More attention must be paid to independent living services for American Indians/Alaskan Natives with disabilities through increased funding and enhanced existing services on a national and tribal level.
References
Bureau of Indian Affairs. (1987). Indian service
population and labor force estimates. Washington, DC: US Department of Interior,
Bureau of Indian Affairs.
Clay, J., (1992). Native American independent living. Rural Special Education
Quarterly, Vol. 11, No. 3. (41-50).
Marshall, C., Johnson, M., Williams, E.M.,Saravanabhavan, R.C., Bradford, B., (1992). The
rehabilitation needs of American Indians with disabilities in an urban setting. Journal
of Rehabilitation, April/May/June 1992, (13-21).
Nelson, John. (1992). Personal communication.
Nosek, Margaret A., Zhu, Yilin, Howland, Carol A., (1992). The evolution of independent
living programs. Rehabilitation Counseling Bulletin, March 1992. Vol. 35, No.3,
(174-189).
Richards, L., (1986). Independent living in rural America: The real frontier.
ILRU Research and Training center on Independent Living at TIRR.
Seekins, T., Jackson, K., Dingham, S. (1991). Rural rehabilitation issues from the
consumer's perspective. Missoula, MT: Research and Training Center on Rural
Rehabilitation.
Seekins, T., Ravesloot, C., & Maffit, R. (1989). Extending the independent living
center model to rural areas: Expanding services through state and local efforts. Submitted
to special issue of Rural Special Education Quarterly.
US Department of Education, Office of Special Education and Rehabilitative Services,
Rehabilitation Services Administration (1987). A study of the special problems and
needs of American Indians with handicaps both on and off the reservation.
Author's Notes: Preparation of this manuscript was supported in part by grants from the University of Kansas and NIDRR Grant # G0087C0228-92. Opinions expressed are those of the author and not those of the funding agency.
The author wishes to thank Wendy Guild, Tom Seekins, and Diana Spas for their help in preparing this manuscript.
