Consumer direction is a concept that came out of the organized disability rights ("independent living") movement. In 1987, the World Institute on Disability (WID), a research organization that serves as a "think tank" for the national disability rights movement, published a report entitled Attending to America (Litvak, Zukas, and Heumann, 1987). With funding from several private foundations, WID had attempted to survey all state-level public programs, regardless of funding source (e.g., Medicaid, Title III of the Older Americans Act, Title XX/Social Services Block Grant, state revenues) that provided personal attendant services, as of 1984, to adults (18 and older) with disabilities, except programs only for people with mental retardation or other developmental disabilities. Attending to America not only published individual and aggregate descriptive information about these programs, it also evaluated them based on the "independent living" philosophy of personal assistance services, also referred to as "consumer direction." A 14-point scale was used to measure the extent of consumer direction available in each program. Key criteria included whether or not public program clients could hire, train, schedule, supervise, dismiss, and pay or participate in paying their personal care attendants directly rather than being required to obtain the services through licensed home health/homecare agencies (the "medical model"). The report concluded that approximately 50 percent of publicly funded attendant care programs permitted some amount of consumer direction, but that only a handful truly exemplified the independent living philosophy.
In 1989, WID received funding from the National Institute for Disability and Rehabilitation Research in the Department of Education to replicate the national survey of personal assistance programs, as of 1988. The Office of the Assistant Secretary and DALTCP decided to take advantage of the opportunity to study variation across states in how they administered the Medicaid personal care services optional benefit. We were interested in contracting with WID to explore why some states had elected to finance personal care services only through a "medical model," requiring attendant care to be provided by certified home health or licensed homecare agencies, whereas other states permitted or required Medicaid beneficiaries to hire, fire, and supervise their own attendants. The research was relevant to policy because the Health Care Financing Administration (HCFA) was in the process of writing regulations for the personal care services optional benefit. A draft Notice of Proposed Rulemaking circulated for comment reflected HCFA's intent to assert greater federal control over how states administered Medicaid-funded personal care services. The preamble described the proposed rule as based on a "modified medical model." Both philosophically and operationally, it discouraged consumer-directed modes of service delivery.
DALTCP's contract with WID called for case studies of six state Medicaid personal care services programs, including site visits, as well as specialized analyses of data from the 1988 attendant care survey, comparing Medicaid-funded personal care services programs across states and with attendant care financed by other federal and state or state-only programs. While the research was under way, we learned that the Commonwealth Fund Commission on the Elderly Living Alone, based at Johns Hopkins University, was also conducting research on the Medicaid personal care option. The Commonwealth Commission, WID, and DALTCP agreed, informally, to coordinate our efforts. As a result, the Commonwealth Commission decided to conduct its surveys of Medicaid beneficiary satisfaction with personal care services in three of the states where WID was doing case studies. This experience suggested some of the benefits of government and a foundation engaging in joint research, even though this particular partnership came about in an unplanned fashion and was never formalized.
WID's analyses of the 1988 survey data on attendant care programs found that 46 percent of these Medicaid programs either required or permitted Medicaid beneficiaries to hire and manage their own attendants directly. The case studies suggested that cost effectiveness, more than a philosophy of promoting independence and autonomy for people with disabilities, was the primary motivation when states chose to encourage or to require "consumer-directed" modes of service delivery. However, in one state, officials also expressed the view that encouraging Medicaid beneficiaries to hire attendants from within their social networks (family, friends, and neighbors) helped sustain natural support systems. States that required attendant care to be provided through agencies were found to be highly concerned about potential liability for poor quality care and had greater confidence than states that favored consumer direction in the efficacy of assuring quality through licensing and related regulatory requirements.
The Commonwealth Fund Commission surveys of Medicaid beneficiaries aged 65 and older who used personal care services found that beneficiaries who reported having more choice and control over hiring and managing their attendants reported greater satisfaction with their attendant services than did beneficiaries reporting less choice and control. Satisfaction with attendant care was greatest among Medicaid personal care services users in the state where the program was the most "consumer-directed."
The results of the WID and Commonwealth Commission studies were widely disseminated shortly after the studies were completed in 1991-92. DALTCP organized briefings for HCFA and the staff of the Office of Planning and Evaluation. The findings were also reported to the larger Washington, D.C., community of health and long-term-care policy analysts at a health policy forum sponsored by George Washington University. The findings were also published in ASPE Research Notes (circulated primarily within the government) as well as in a professional journal (Doty, Kasper, and Litvak, 1996). Although it is seldom easy to document the direct effects on policy making of policy research, there is reason to believe that these studies and follow-up research affected legislation that Congress passed in 1993 that eliminated certain requirements that critics felt imposed a medical model on personal care services, and that they also influenced HCFA's subsequent approach to writing regulations and guidelines for Medicaid personal care services. The final rule on personal care services published in 1997 preserved and even expanded the discretionary authority of states to provide for consumer direction and a 1999 official Medicaid transmittal explicitly stated that states could choose consumer-directed service-delivery modes.
The results from the WID case studies also generated hypotheses about the advantages and disadvantages of consumer-directed models of service delivery that DALTCP was interested in testing. To do so would, however, require DALTCP to sponsor research on a larger scale, involving statistically representative data and multivariate quantitative analyses comparing the outcomes of consumer-directed and more traditional models of service. In 1994, DALTCP put out a competitive request for contract to compare consumer-directed and professional management models of personal assistance services delivery in the context of California's In-Home Supportive Services (IHSS) program. The contract was awarded to the University of California, Los Angeles (A.E. Benjamin, principal investigator) (see Benjamin and Matthias, this issue). The study, which involved interviews with over 1,000 IHSS recipients and over 600 consumer-directed and agency-employed workers found that both service-delivery models had positive outcomes overall. However, the consumer-directed model had significantly better outcomes on six of fourteen client-related outcome measures having to do with satisfaction with services, empowerment, and quality of life. The professional management (agency) model did not outperform the consumer-directed model on any outcome measures. (Benjamin, Matthias, and Franke, 1998; Doty et al., 1999). Although these findings were not yet available during the early design phase of Cash and Counseling, the evaluation contractor drew on the survey instruments developed for the California study, which will facilitate comparison of the California study findings with those that eventually emerge from Cash and Counseling.
Also, in 1994, DALTCP sponsored the first of what was to become a series of studies by Susan Flanagan (then with the MedStat Group) focusing on tax and labor law issues that affected state administration of consumer-directed personal assistance programs (Flanagan, 1994; Flanagan and Green, 1997). This research included a descriptive overview of twenty-two consumer-directed personal assistance services programs in sixteen states. The states and their programs were selected because they represented variations within consumer-directed service-delivery models. Over the years, DALTCP has been able, through Susan Flanagan's research and consultation, to establish an ongoing relationship with the U.S. Internal Revenue Service that has lead to improvements in policies and procedures with regard to tax filings for client-employed personal attendants and other in-home workers. Susan Flanagan has provided technical assistance to all of the Cash and Counseling states in designing the fiscal intermediary services, awarding contracts to fiscal intermediary organizations, and monitoring their performance after implementation. Fiscal intermediary services are made available to assist treatment group members with using their cash allowances to purchase disability-related goods and services, including paying wages to and making tax filings on behalf of their client-hired attendants. Consumer-friendly training manuals have been designed for treatment group participants who elect to take on full employer responsibilities themselves.
In 1996, DALTCP cosponsored (with the American Association of Retired Persons, the National Association for Home Care, and the American Nurses Association) a national conference through the National Institute on Consumer-Directed Long-Term Services (a partnership of the World Institute on Disability and the National Council on Aging) to explore "nurse delegation" and related approaches to revising state nurse practice acts to permit people with disabilities who require paraprofessional or paramedical services (e.g., medication management, bowel and bladder care) to exercise more choice and control in arranging to have these needs met (Wagner, Nadash, and Sabatino, 1997). DALTCP also provided financial support, through the Administration on Aging, for Consumer Choice, a quarterly newsletter published by the National Institute on Consumer- Directed Long-Term Services, to disseminate information about consumer-directed research, demonstrations, policies, programs, and practices.