...just those using 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). More recently, Kosciulek's consumer-directed theory of empowerment (CDTE) was used to explain the increased consumer direction in disability policymaking and service delivery as a facilitator of increased community integration, empowerment, and quality of life for people with disabilities (1999a, 1999b). The core value behind the consumer-directed model is the positive autonomy of consumers. This autonomy encompasses proactive participation in the design and implementation of PAS, where autonomy is defined as a matter of personal choice and control over everyday routines (Kapp, 1996; Dautel & Frieden, 1999; Sabatino & Litvak, 1992). Consumer-directed PAS aims to maximize the independence, flexibility, social participation and productivity of people with disabilities. In contrast, proponents of agency-directed services argue that accountability, professional authority and quality assurance are at least equally important factors to consider (Benjamin, Matthias, & Franke, 2000). For reasons that may be tied to these factors, older consumers tend to choose the agency-directed model and younger consumers embrace the consumer-directed model (Eustis & Fischer, 1991).

Empirical Studies Related to Outcomes of Consumer-Directed Personal Assistance Services

A number of studies support the notion that people using consumer-directed PAS have better outcomes than their counterparts whose care is agency directed. Prince et al. (1995) investigated whether people with a high level of tetraplegia had better perceived quality of life, health status, and lower cost of care depending on whether they used agencies for their caregivers or independently hired and trained their caregivers. Using the Rand-36, LSI-A, PASI, PIP and CHART (Whiteneck et al., 1992) as measurement tools, the self-managed group showed significantly better health outcomes, with fewer re-hospitalizations and diminished preventable complications. They also experienced greater life satisfaction and significantly lower costs of paid care.

Three studies used consumer surveys to determine the effect of Virginia's consumer-directed PAS program on consumer outcomes (Richmond et al., 1997; Beatty, Adams, & O'Day, 1998; Beatty, Richmond, Tepper, & Dejong, 1998;). Richmond et al. (1997) evaluated the relationship between using consumer-directed PAS and employment outcomes of individuals with physical disabilities and found that consumer-directed PAS increased productivity, while participants' health status was positively correlated with higher occupation scores. Beatty, Adams, and O'Day (1998) found that consumers receiving consumer-directed PAS had higher rates of preventive healthcare utilization and lower rates of utilization for doctor visits, emergency room visits, hospital days, skilled nursing facility days, and visits from home health providers. Additionally, consumer-directed PAS users reported greater feelings of control over their lives, significantly greater productivity in terms of employment rates, and higher satisfaction with PAS. Results of Beatty, Richmond et al. (1998) looked exclusively at consumer satisfaction, concluding that consumer-directed PAS was associated with higher satisfaction.

Work done in both California and Arkansas point towards similar results. Benjamin, Matthias, and Franke (2000) compared the outcomes of an alternative service delivery model in California's In-Home Supportive Services Program and found that clients in consumer-directed care had more desirable outcomes: satisfaction with service, empowerment, and quality of life. In Arkansas, Foster, et. al. (2003) evaluated that states' Cash and Counseling Demonstration by comparing outcomes of traditional agency-directed care with consumer-directed care. Under the Cash and Counseling approach, consumers were provided a monthly allowance equivalent to what would be spent under traditional Medicaid for the care authorized, and they were given greater flexibility in using this allowance. The self-direction approach was associated with improved consumer satisfaction and quality of life, while unmet needs for care were reduced without compromising health or safety (Foster et al., 2003).

None of these studies included cost-related analysis such as average monthly cost per person and utilization of needed medical services. Because our study includes both consumer-directed PAS and agency-directed PAS users, it allows us to explain differences in outcomes between these groups. A robust sample size improves our ability to generalize results of this study as well.

Description of the Physical Disability Waiver Program

Research participants were enrolled in the Home and Community Based Service (HCBS) Physical Disability (PD) Waiver in Kansas in 1998. HCBS PD waivers in Kansas serve individuals age 16 through 64 who have been determined physically disabled by Social Security standards (The State of Kansas, 1996). To be eligible for a waiver, one must meet two eligibility criteria: financial need and appropriateness for institutional care. Income level must not exceed 300% of the Supplemental Security Income (SSI) federal benefit level. Consumers must also meet the long-term care...

NOTE: All illustrations and photos have been removed from this article.



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