Assessment of Services to American Indians with Disabilities.

The estimated rate of disabling conditions among American Indians is higher than any other group in the United States, with a rate that is six times higher than the general population (Toubbeh, 1990) and a prevalence rate of 33% among American Indians 18 years of age or over (Altman, 1991). Each age group in this population appears to have its own risks associated with the increased prevalence of disability. For example, American Indian elders develop secondary health problems from primary disabilities at a rate which is 30% greater than other Americans of similar age (Toubbeh, 1987; 1990). The American Indian working-age group was 1.5 times more likely to report work-related disabilities than the general population (Clay, Seekins & Cowie, 1994; O'Connell, 1987). Likewise, young American Indian male adults have a seven times greater chance of becoming disabled before the age of 26 than any other race of people in the United States (O'Connell, 1987).

Nowhere does the increased incidence of disability associated with varying age groups appear clearer than among the young. An estimated 40,000 American Indians under the age of 18 were classified as having a disability in 1991 according to the National Indian Justice Center. American Indian adolescents have serious health problems: developmental disabilities such as mental retardation and learning disabilities; depression; suicide, anxiety; low self-esteem; and alienation (Hodge, 1990; Locust, 1990; National Indian Justice Center, 1991; O'Connell, 1987). American Indian infants are born with disabling conditions at three times the rate of all other babies in the United States (Toubbeh, 1990). Bacterial meningitis, otitis media, and congenital anomalies occur among American Indian populations at an overall rate of twice the national average, but varies from tribe to tribe (Hodge & Weinman, 1987).

Many American Indians with disabilities are either unserved or underserved. The final report from the National Indian Justice Center's roundtable discussion on "Disabilities and their Effects on American Indians and Alaskan Native Communities" (1991) found that access to services is limited by personnel shortages, inadequate funding, legislative barriers, and problems identifying persons eligible for services. Furthermore, an extensive review of literature by Cornell and Ma (1992) found limited information on the status of, and services provided to, American Indians with disabilities. This review identified three factors that influence health care service provision: (a) lack of specific information and knowledge about the rehabilitation needs of American Indians with disabilities including, developmental disabilities, (b) very limited disability services reaching American Indians with disabilities, and (c) uncertainty regarding responsibility for service provision to Indians with disabilities.

Despite these research initiatives, much of the available information about health and disability services for American Indians is limited and anecdotal. Very few studies have been published over the last decade that provide systematic insight into the nature and scope of this issue. The need for further investigation is apparent and timely. This article represents an attempt to add to the existing, albeit sparse, knowledge base. It reports the results of a survey of program directors or coordinators affiliated with the Indian Health Service, the Bureau of Indian Affairs, the Developmental Disability Networks, Vocational Rehabilitation, and American Indian Head Start. The present research study addressed the following four research questions about the status of services to American Indians with disabilities and barriers to receiving such services:

* Are local service providers aware of specific mandates to identify and serve all individuals with disabilities, including developmental disabilities?

* What services have been provided to American Indians with disabilities?

* What are the major barriers that hinder American Indians with disabilities from accessing services?

* What perceptions do service providers have regarding the need for culturally appropriate services to American Indians with disabilities?

Method

Participants

The target population of this study were rehabilitation, disability, developmental disability, and health service program directors or coordinators in the 15 states with the highest percentage of American Indian populations. These states include Alaska, Arizona, California, Michigan, Montana, Nevada, New Mexico, New York, North Carolina, North Dakota, Oklahoma, South Dakota, Texas, Washington, and Wyoming (U.S. Department of Commerce, 1993; Bureau of Indian Affairs, 1993).

Mailing lists were obtained from: (a) Indian Health Service (IHS) hospitals/clinics and tribal health programs, (b) Bureau of Indian Affairs (BIA) schools, (c) American Indian Head Start programs, (d) rehabilitation programs, (e) developmental disability networks (including university affiliated programs, protection and advocacy agencies, and developmental disability planning councils), and (f) tribal councils. Thirty-three program directors or coordinators from each state were randomly selected (total 495). Post-hoc power analysis indicated that a sample of 495 participants provided enough power to find medium (.30) or large (.50) effect size differences for chi-square analyses.

A first initial contact mailing was sent to these 495 participants to acquire information about their interest in the study, their position title, and contact information. A total of 321 individuals responded and expressed interest in participating in the survey. However, fifty-nine of these individuals were tribal chairmen or leaders of tribal councils, and therefore were ineligible for the study because they did not directly supervise or coordinate disability or health-related programs. In all, a survey packet was sent to 262 individuals who indicated interest in participating in the survey. Fifty-two percent (136 of 262) of those receiving a packet completed the survey. These 136 individuals represent 27% of the original 495 sample population.

Instrumentation

A survey instrument was designed to collect data from respondents in four areas: (a) awareness of federal mandates, (b) service status, (c) access barriers to disability services, and (d) culturally sensitive services. The instrument was constructed on the basis of the four research questions, which were recommended by a panel of experts who specialized in health and rehabilitation services.

A pilot test of the survey instrument was conducted with 15 health or rehabilitation program administrators. These participants were not included in the study. The pilot test determined: (a) test-retest reliability, (b) the appropriateness of the format design and content, and (c) the ease of completing the survey. Minimum changes were suggested; for example, one of the revisions focused on changing items dealing with the cross-cultural perceptions of service providers and location of services. All recommendations were incorporated into the final instrument that was used for the study.

The final survey instrument contained 46 items. Forty-three items were close-ended questions; three were open-ended for comments. Five of the close-ended questions used a six-point Likert response scale, with 6 being "strongly agree," 5 "agree," 4 "somewhat agree," 3 "somewhat disagree," 2 "disagree," and 1 "strongly disagree." The remaining items required "yes" or "no" response.

Data Analysis

Survey data were systematically coded and entered in SAS statistical software for analysis. Data analyses were primarily descriptive in nature and designed to provide information about questions posed.

Results

Awareness of Federal Mandates

One item on the survey directly addressed service providers' awareness of federal mandates that influence service provision to American Indians with disabilities. Respondents were most aware of P.L. 101-476, the Individuals with Disabilities Education Act (IDEA) (67%), followed by the Americans With Disabilities Act (ADA) (60%). Respondents appeared least aware of state laws that affect service provision (13%) and the Social Security Act, Title V (34%). A few respondents also mentioned other federal laws, such as the Veteran's Rehabilitation Act of 1919, the Civilian Rehabilitation Act of 1920, the Developmental Disability Act of 1970, the Voting Rights Act of 1982, and the Air Carrier Access Act of 1986. Interestingly, fifty-eight percent of the providers report being aware of the Rehabilitation Act of 1973. Section 504, which prevents discrimination against individuals with disabilities by any organization receiving federal funds. However, ninety-nine percent of the service providers reported receiving federal funds. The discrepancy between awareness of the relevance of the Section 504 of the Rehabilitation Act of 1973 to American Indians with disabilities may be grounded in the specific language of this legislation. Unless the language used in the legislation specifically addresses Indian tribes, it is possible for misinterpretation to occur regarding the applicability of the legislation to the Indian population.

Service Status

Service adequacy. Of the 136 respondents, 105 (77%) indicated that the target population for their services were American Indians and Alaskan Natives. One hundred agencies reported providing services to American Indians in the 12 months prior to the survey. In addition, much variability existed in terms of the number of clients from these ethnic backgrounds actually receiving services (Table 1). Fifty-one percent of the 100 agencies providing services to American Indians reported providing services to fewer than 400 American Indian clients. However, this research does not allow one to determine if this is a function of population density or service delivery.

Table 1 Current Service Status for Indians with Disabilities

Range # of Indian Clients Served                N=136         %

  0                                                36     26.47
  below 100                                        36     26.47
  101-200                                          19     13.97
  201-300                                          10      7.35
  301-400                                           4      2.94
  401-500                                           7      5.14
  501-1000                                          5      3.68
  1001-5000                                         4      2.94
  5001-10000                                        4      2.94
  10001-20000                                       3      2.20
  above 20000                                       8      5.90

Range # of Indians with Disabilities Served

  0                                                50     36.76
  1-15                                             23     16.91
  16-50                                            34     25.00
  51-100                                           10      7.35
  101-200                                           5      3.68
  201-300                                           7      5.15
  above 300                                         7      5.15

The relatively small number of American Indian clients receiving services from these agencies is more pronounced when one examines the number of agencies that report providing services to American Indians with disabilities (Table 1). Sixty-three percent of the agencies responding to the survey indicated that they had provided services to American Indians with disabilities during the 12 months prior to the survey. Approximately, 17% answered that they provided services to 1 to 15 Indian clients with disabilities during that period of time. Twenty-five percent estimated providing services to 16 to 50 American Indians with disabilities. Fourteen service agencies (10.3%) served more than 200 American Indians with disabilities. Interestingly, these 14 service agencies were funded through either the IHS or the BIA. Given the high percentage of American Indians in these states (U. S. Department of Commerce, 1993) and the high prevalence rate for disability in this ethnic group (O'Connell, 1987; Toubbeh, 1987; 1990), this data would suggest that health care service delivery to American Indians with disabilities was inadequate and could not adequately respond to the needs of this population. A cautionary note, however, is needed. The survey also indicated that only 5% of the respondents had client information systems that allowed for the tracking of disability services by ethnicity. Therefore, the estimated service provision to American Indians with disabilities may actually be slightly higher; however, a 5% increase in service provision would still seem inadequate given the proportion of the population that this group represents.

Service provision. In addition to the number of American Indian clients served by the responding agencies, the survey also examined the type of disability-related services being provided. Table 2 contains the frequency distribution for type of disability service by type of agency. For this analysis, agencies were organized into four categories, BIA agencies (n = 43); IHS agencies (n = 36); American Indian Head Start agencies (n =36); and Developmental Disability Network agencies (n = 17). Vocational Rehabilitation program agencies (n = 4) were excluded from this analysis due to the small number who responded to the survey.

Table 2 Services Provided by Respondent Agencies

Services                           Respondent Agencies

                                     IHS    A.I. Head Start
                                   (n=36)            (n=36)

Health                                86%               69%
Advocacy                              57%               51%
Mental health                         77%               43%
Rehabilitation/habilitation           17%               23%
Social service                        67%               74%
Therapies: physical/occupational      14%               57%
Support groups                        60%               43%
Assistive Technology                   6%               11%
Special Education                      3%               69%
Legal                                  0%                6%
Career training/placement              9%                0%
Information & referral                54%               74%
Early intervention                    43%               89%
Independent living                     9%                3%
Training & technical assistance       20%               37%

Services                            Respondent Agencies

                                      BIA    DD Network
                                    (n=43)      (n= 17)

Health                                 33%          24%
Advocacy                               17%          71%
Mental health                          27%           6%
Rehabilitation/habilitation             8%          12%
Social service                         27%          12%
Therapies: physical/occupational       54%          24%
Support groups                         27%          24%
Assistive Technology                    2%          18%
Special Education                      88%          12%
Legal                                   2%          29%
Career training/placement              33%           6%
Information & referral                 46%          41%
Early intervention                     35%          24%
Independent living                     27%           6%
Training & technical assistance        19%          47%

Note: This table did not include Vocational Rehabilitation programs, because there were only 4 respondents. For this analysis, total n =132. Agencies could endorse more than one item; therefore frequency is greater than 100.

American Indian Head Start programs had the highest frequency of service provision in 5 of the 15 service areas, including social services, physical and occupational therapies, special education, information referral, and early intervention (Table 2). Developmental Disability Network agencies had the highest frequency of service provision in several indirect service areas such as advocacy and technical assistance. While agencies in each category provided rehabilitation/habitation, assistive technologies, and independent living services, these services were infrequently provided by Indian Health Service despite legislative mandates that require IHS to provide comprehensive health care, including services for the chronically ill and people with disabilities.

Access Barriers to Disability Services

A number of barriers hindered American Indians with disabilities from accessing services. Sixty-three percent of the service providers indicated that Indians with disabilities encountered greater barriers to receiving services than non-Indians with disabilities. These barriers are summarized into three broad categories: (a) policy and administration issues; (b) lack of resources and service availability; and (c) lack of community awareness and involvement (Table 3).

Table 3 Access Barriers to Providing Services to Indians With Disabilities

                                                N=136     %
Access barriers

Agency administration & policy issues              38    28
Lack of resource and service availability          55    40
Lack of community awareness                        38    28
Others                                              5

Policy and administration issues. Twenty-eight percent of the service providers indicated that the greatest barriers to Indian disability service delivery were policy and administration issues. These barriers included: (a) lack of specific agency responsibilities for services to American Indians with disabilities and confusion in implementation of federal, state laws and tribal policies, which resulted in fragmented service delivery as well as the duplication of dispersed services; (b) lack of acknowledgment of Indian cultural beliefs and practices in agency policies and operation; and (c) time lag between referral and diagnosis.

Lack of resources and service availability. Forty percent of the service providers reported a lack of resource and service availability as another important factor in the failure of Indians with disabilities to obtain adequate services. Three factors identified by respondents that contributed to this problem are addressed below.

First, multiple short-term funding sources diffused the service agency's focus, creating difficulties in long-term planning for appropriate community services. For example, respondents indicated that most vocational programs in Indian reservation communities were one- or two-year demonstration projects. Despite program success, services were often terminated as soon as the funding period ended, as local Indian communities did not have sufficient resources to continue with these services.

A second factor identified was the lack of well-trained professionals in disability services. Twenty-four percent of the service providers reported that their agencies did not require a bachelor's degree for case manager/social worker positions, and 69% of the agencies stated that intake workers were not expected to have a degree. All agencies required project directors, agency directors, researchers, and teachers to have some formal professional training.

A third factor identified was the lack of assistance with transportation. Geographic isolation and transportation were cited by almost a third of respondents as creating a significant service barrier confronting American Indians with disabilities. More than three-fourths of service providers indicated their clients traveled about 50 miles to obtain services. Public transportation was not available on most reservations and mobility remained a significant problem for prospective clients.

Lack of community awareness and involvement. Lack of awareness and involvement by the Indian communities was considered another major barrier to services for Indians with disabilities by 28% of service providers. This category included such issues as: (a) lack of family services; (b) Indians' lack of knowledge about available services; (c) lack of information resources at visible and accessible locations, (d) family concerns with labeling their children disabled; (e) service providers' unawareness of the local needs in Indian communities; (f) cultural clashes and language challenges; and (g) lack of integration of western and traditional medicines.

Culturally Appropriate Services

The majority of the service providers strongly agreed that American Indian values were important considerations for effective service delivery (M = 5.4 on a scale of 1 to 6, with 1 being "strongly disagree" and 6 "strongly agree"). There was modest support for staff cross-cultural training. The average rating on the same scale was 4.6. In terms of providing culturally appropriate services, most respondents believed that the incorporation of Native American traditional healing practices would enhance services for American Indians with disabilities (M= 4.1). When asked if American Indian parents in their service areas were reluctant to expose their children with disabilities to the public, some respondents reported that cultural values and beliefs have hindered Indians with disabilities from accessing available services (M = 3.9) (Table 4).

Table 4 Mean Scores for Cross Cultural Perceptions of Service Providers

                                                        Mean     SD

Importance of Indian cultural values                     5.4    1.0

Importance of cross-cultural training for staff          4.6    1.4

Incorporation of traditional healing enhances            4.1    1.5
services for American Indians with disabilities

Difference in definition of disability between           3.7    1.4
American Indians and non-Indians

Reluctant to expose children with disability to
the public                                               3.9    1.2

Note: Responses are on a 6-point scale: 1 = strongly disagree, 2 = disagree, 3 = somewhat disagree, 4 = somewhat agree, 5 = agree, 6 = strongly agree

Discussion

Results from this survey indicate that service providers are aware of federal legislation influencing disability-related service provision to American Indians with disabilities. Not surprisingly, service providers were most aware of P.L. 101-476 (IDEA). This awareness most likely stems from the clearer language in this law than predecessors of this law that stipulates the role of BIA in serving Indian children with disabilities. While respondents were also knowledgeable of other legislation that influences service provision to American Indians with disabilities, they were least knowledgeable of legislation that was specifically addressing responsibility for American Indians. Service providers were least aware of state and local legislative mandates. Lack of awareness of state and local mandates may reflect the long-standing conflict between state and federal agencies over jurisdictional boundaries with this population. The ambiguity of jurisdictional boundaries has plagued service provision to this population for some time, with responsibility most often being placed on the federal government. It would appear, from this survey, that this continues to be an issue that needs to be addressed and that service providers continue to need inservice education in this area. Additionally, results from this survey also indicate the need for staff development efforts that would assist staff in upgrading their skills and obtaining college degrees or other professional training that would enable them to more adequately meet the diverse needs of this population.

Unfortunately, despite the identification of American Indians with disabilities as a target service group by 77% of the respondents, the provision of such services to this population is problematic and, in fact, quite minimal if one examines the actual number of individuals served. Again, most services were provided by agencies with clearly defined mandates to American Indians like HIS, BIA, and American Indian Head Start programs. Agencies which did not have clearly defined mandates to American Indians with disabilities tended to provide fewer services to this population.

A striking finding of this research was the limited availability and use of certain types of disability-related services. Therapies such as physical therapy and occupational therapy were rarely provided in any settings other than schools. Likewise, the availability of assistive technology services, independent living, and/or career training/placement services was minimal. Services such as these are needed to enhance the quality of life for American Indians with disabilities. This is especially true in those incidents in which a disability is acquired after the age of 18 and the individual is no longer associated with the school system. Therapies and assistive technology services are also relevant to older American Indians with disabilities who are at a high risk for developing secondary health problems related to disability.

The barriers to adequate service provision identified by service providers are consistent with those identified in the final report from the National Indian Justice Center roundtable on "Disabilities and their Effects on American Indians and Alaskan Native Communities" (1991). Lack of resources and service availability was identified as the primary barrier by service providers, followed by community awareness of services and resources, and agency administration and policy issues. Creative energies, which include the perspective of American Indians with disabilities, are needed to find solutions to these problems.

Based on the results of this survey, the authors propose three priority areas that may enhance health care services for American Indians with disabilities. One priority would target the expansion of home-based services so that American Indians with disabilities who reside in geographically isolated areas can have better access to health care services. Lack of transportation and long-distance driving to health or rehabilitation service facilities have been major concerns facing American Indians, especially those residing on reservations.

A second priority is to evaluate outreach and rehabilitation programs to determine their effectiveness with this population, with special consideration given to outreach efforts that utilize extended family and local community networks. For example, support is needed to provide community awareness campaigns about disability and rehabilitation services during ceremonial or social events in American Indian communities. Family and community networks play important roles in decision-making processes and choices for disability and rehabilitation services. Strengthening family and community support services cannot be underestimated.

Finally, continuing professional staff development and the expansion of cross-cultural training efforts are needed. The information provided in these programs should surpass the mainstream society and American Indian cultural dichotomy and include unique cultural features. Many American Indians encounter bicultural living environments. The issues that this environment creates in terms of tribal identity and differences in beliefs about disabilities must be addressed. Other issues that staff development programs must address include the impact of poverty, lack of employment, geographical isolation, and inadequate education on Indian disability services. It is imperative that disability, rehabilitation, or health care providers increase their cross-cultural understanding of this population in the light of the fact that American Indian families continue to maintain some traditions despite various levels of acculturation.

References

Altman B. M. (1991). Disability among Native Americans: Self reports of functional limitations and health studies. Washington, DC: Agency for Health Care Policy and Research.

Bureau of Indian Affairs. (1993). 1990's census data on Indians. Indian News. 17(14), December, 2-4.

Clay, J., Seekins, T., & Cowie, C. (1994). Secondary disabilities among American Indians in Montana. Rural Special Education Quarterly, 2 (1), 20-25.

Cornell, D., & Ma, G. X. (1992). Three Feathers Associates American Indian developmental disability research project: First year report. Washington, DC: Administration on Developmental Disabilities, U.S. Departmental of Health and Human Services.

Hodge, E (1990). Disabled American Indians: A special population requiring special considerations. American Indian Culture and Research Journal, 13(3 & 4), 83-104.

Hodge, F., & Weinman, S. (1987). Disabled American Indians: An overview of the etiology of disability in Alaska, Montana, and Navajo areas. Tucson, AZ: Native American and Research Training Center, University of Arizona.

Locust, C. (1990). Testimony in behalf of handicapped American Indians in need of appropriate educational services to assist them in attaining their highest level of performance and attainment in education. Presented at Nations at Risk Task Force, Phoenix, AZ. September 12.

National Indian Justice Center. (1991). Disabilities and their effects on American Indian and Alaskan Native communities. Petaluma, CA: National Indian Justice Center.

O'Connell, J. C (1987). A study of the special problems and needs of American Indians with handicaps both on and off the reservation. Flagstaff, AZ: Northern Arizona University, Native American Research and Training Center and Tucson, AZ: University of Arizona, Native American Research and Training Center.

Toubbeh, J. T. (1987). Larks and wounded eagles: A commentary on services to Native Americans with disabilities. American Rehabilitation, 13(1), 2-5; 24-8.

Toubbeh, J. T. (1990). Virdga over Indian landscape. A speech delivered at the National Conference on Indians with Disabilities. Albuquerque, New Mexico, October 2-4.

U.S. Department of Commerce. (1993). We, the first Americans. Washington, DC: U.S. Government Printing Office.

Catherine Coyle Temple University

Dale Wares University of Oklahoma

David Cornell Three Feathers Associates

Grace Xueqin Ma, Ph.D., Assistant Professor, Department of Health Studies, Temple University, 304A Vivacqua Hall, P.O. Box 2843, Philadelphia, PA 19122-0843. Email: [e-mail]3