Assessment of Services to American Indians with Disabilities - Statistical Data Included

Journal of Rehabilitation,  July-Sept, 1999  by Grace Xueqin Ma,  Catherine Coyle,  Dale Wares,  David Cornell

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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.