Academic journal article The Journal of Rehabilitation

Comparing Outcomes of Persons Choosing Consumer-Directed or Agency-Directed Personal Assistance Services

Academic journal article The Journal of Rehabilitation

Comparing Outcomes of Persons Choosing Consumer-Directed or Agency-Directed Personal Assistance Services

Article excerpt

For many in the disability community, rehabilitation counseling is increasingly tied to reimbursement systems through which persons with disabilities are able to optimize their value to society in collaborative and facilitative ways. Counseling can help the client consider many choices, not just those using a one size fits all approach. As an example, the recent growth of state run Medicaid Home and Community-Based Waivers offers persons with disabilities expanded availability to personal assistance services (PAS). Counselors can help clients review the best approach to facilitating pathways towards independence for waiver participants. Additionally, counselors can assist their clients in further enhancing their knowledge and employable skills once they have moved from institutions or skilled nursing homes to less restrictive settings.

In the Disability Statistics Center's 2002 report, it was estimated that in 1994-95 almost 13.2 million individuals in the U.S. received an average of 31.4 hours per week of help with activities of daily living (ADLs) or instrumental activities of daily living (IADLs) (LaPlante, Harrington, & Kang, 2002). However, many individuals polled reported they needed more help than they received and were forced to rely on a patchwork of informal services that did not meet their true needs (LaPlante, et al., 2002; LaPlante, et al., 2004). The inadequacy of this service delivery system has caused a large number of vocal consumers and users of PAS to declare that an expansion for PAS will be essential to fulfill the independent living (IL) principle of choice and control (Kafka, 1998).

Personal assistance services (PAS) are defined as a range of human and mechanical assistance provided to people with disabilities of any age who require help with routine activities of daily living (ADLs) and health maintenance activities (Doty, Kasper, & Litvak, 1996; Stone, 2000). These activities include bathing, dressing, ambulating, feeding, grooming, and some household tasks such as meal preparation and shopping. In a broader sense, Doty and colleagues suggest that PAS refers to assistive technologies, home modifications, psychosocial rehabilitation, and other specialized products and services (Doty, et al., 1996). If people with severe disabilities lack personal assistants to help perform their activities of daily living and maintain health, they cannot live independently, promote their health, secure and maintain employment, and participate actively in their communities (Beatty, Richmond, Tepper, & Dejong, 1998; Nosek, 1990). Many people on waiting lists for this service may have their quality of life compromised (Gallagher, 2003). Community living for all people with disabilities has been an important goal of the independent living movement since its beginning (Beatty, Adams, & O'Day, 1998; Dejong, 1979). An essential component for achieving independence in a community setting is the ability to perform personal care activities with or without assistance (Dejong, Batavia, & McKnew, 1992; Eustis, 2000; Leutz, 1998; Nadash, 1998; Velgouse & Dize, 2000).

There are three service delivery models in PAS: agency-directed (AD), consumer-directed (CD), and a combination of these two approaches. Under the agency-directed model, the agency recruits and selects an assistant, schedules the client's care, and supervises quality of care delivered to the client. Under the consumer-directed model, developed largely through the efforts of the independent living movement, consumers themselves are responsible for hiring, training, scheduling, managing, and firing their personal assistants (Doty, Benjamin, Matthias, & Franke, 1999; Micco, Hamilton, Martin, & McEwan, 1995).

The early work of Beatrice Wright influenced the consumer-directed collaborations mandated in the 1992 Rehabilitation Act Amendments and emphasized the importance of client participation in all service delivery environments (1973, 1981). …

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