Independent Living Research

RESEARCH INFORMATION ON INDEPENDENT LIVING
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Volume 2, Issue 6

Underserved Populations

Centers for independent living (CILs) historically have provided an effective service system to assist adults with significant physical or sensory disabilities living in the community. As CILs have matured, their service systems have expanded to all people with disabilities, including those of different cultures, non-English speakers, rural residents, people with multiple disabilities, and the elderly.

Unserved or underserved populations, says the Rehabilitation Services Administration, are groups of persons with disabilities who are not served as the result of policy, practice, or environmental barriers.

Technology-Related Assistance for Individuals with Disabilities Act in July of 1988 defines an underserved group as "any group of individuals with disabilities who, because of disability, place of residence, geographic location, age, race, sex, or socioeconomic status, have not historically sought, been eligible for, or received technology-related assistance."

Conditions that can cause disability populations to be unserved or underserved include:

Invisible condition. People with hidden disabilities, such as hearing loss, may be viewed as less disabled than a person with a more obvious disability.
Secondary health problems. Other conditions may exist besides the primary disability. The word "secondary" also may suggest that the disability is not important.
Accommodation needs. Not understanding a disability can result in service providers unaware they should be making accommodations or who may be confusing one disability with another.
Personal misconceptions about disability. Some people with disabilities may not seek assistance because they have mistaken ideas about their disability and services.
Denial. Some people do not want to identify themselves as having a disability.
Policies. If service is based on severity, some disabilities may be bypassed for more critical disabilities.
Functional limitation difficulty. Some people may appear to be functioning well, but without assistance their functioning may change.

For example, individuals with epilepsy might not be getting services, because they may have a hard time obtaining a driver’s license and therefore have problems getting to services. They also may not seek help because of the stigma attached to epilepsy or because of long-standing feelings of helplessness that cause them to not participate in programs. And, because their condition is “invisible,” they may be ignored or thought to lack a serious disability.

To determine whether individuals were underserved, the Rehabilitation Research and Training Center on Community Rehabilitation Programs to Improve Employment Outcomes, University of Wisconsin-Stout, did a study and came up with 31 items in four categories to identify undeserved populations.

The first category was "demographics" (racial/ethnic issues, geographic disbursement, lack of prevalence or incidence data). In "disability," the second category, were communication barriers, condition invisibility, confusion with other disabilities, and secondary health problems. The "psychosocial" category had service delivery attitudes, depressed economy, personal misconceptions, denial, lack of service awareness, disability over identification, need for personal empowerment, and employment barriers.

The largest category was "service delivery," which included selection order, waiting lists, secondary disability label, difficulty establishing functional limitations, and inappropriate eligibility standards.

The Independent Living Resource Center in San Francisco has used several methods to reach out. One is by having a staff person from the community provide all customized core services for a certain group. This has worked well with outreach to the psychiatric disability community and the deaf and hard of hearing community. Another method was using a staff employee as the go-between a single disability group and the center and successfully used with a multiple chemical sensitivity group and a traumatic brain injury group.

It also has placed a CIL employee in a service center already accepted by the community, which worked well with the Hispanic community. To reach the Chinese community, the CIL held meetings in Chinese with a translator for the English speakers and held a disability awareness poster contest each year.

To reach the average four cultural populations each CIL services, Susan Parker-Price, Research and Training Center on Independent Living, The University of Kansas, surveyed CILs and found the most reported activity was "specific consumer service." CILs also commonly reported they worked with organizations or leaders of underserved populations. Barriers to providing outreach services to underserved populations were lack of finances, training, and personnel, Parker-Price found.

Populations that once didn’t get CIL services now increasingly are. For example, in 1988, researchers found that the median number of consumers with brain injuries served by 107 CILs was five. In 1995, other researchers found that the median number of this population served by 174 CILs was 12.

In 1988, 60% of the CILs reported an increase in the number of individuals with brain injuries served and in 1995, 48% of the CILs reported an increase.

Cindy Higgins, The Research and Training Center on Independent Living, The University of Kansas, 1000 Sunnyside Ave., Room 4089 Dole Center, Lawrence, KS 66045-7555, (785) 864-4095, E-mail: [email protected]. This project is funded by the National Institute on Disability Rehabilitation Research grant #H133A980048.

Information for this review came from the interactive Research Information on Independent Living (RIIL) database at www.GetRiil.org, which contains research summaries related to independent living with disabilities. A special effort has been made to include information that independent leaders in the field said they wanted, namely topics regarding accessible, affordable housing, effective advocacy for rural areas, effective transition from schools and nursing homes, accessible, affordable transportation, reaching underserved populations, policies that impede independent living, rural health care services, and Medicaid/Medicare regulations for durable equipment.

RIIL is a joint effort of the Research and Training Center on Independent Living at the University of Kansas and the Independent Living Research Utilization (ILRU) Program of TIRR.