Part A: Continued
Tailoring Interventions to Local Needs
The RWJ grants, meanwhile, provided $17.1 million to support 4-year demonstration projects in 11 communities to help them develop community-based systems of care similar to the one that had evolved in San Francisco, which was shown to have a positive impact on hospitalization rates, costs, and patient satisfaction.4
According to Silverman,5 however, the local programs were not carbon copies of the San Francisco model or of one another but were developed to reflect the needs of local communities. This local flexibility set an important precedent for the future Title I program, as did requirements for community advisory boards.
“We put money in the middle of the table and asked everyone to come sit around the table,” says Silverman of the RWJ program. “We wanted to fund cooperative, collaborative projects.” There was also close collaboration between HRSA and RWJ, which were funding the same agencies in some communities and often made site visits together.3
HRSA’s Demonstration Projects: A Blueprint for the Future
According to McCarthy, much of the structure and legislative language for Title I came from HRSA’s demonstration projects. As passed, CARE Act Title I had relatively brief, broad language about the types of services to be funded: outpatient and ambulatory health and support services and inpatient case management designed to keep people out of the hospital or expedite their discharge. “Case management was heavy, and so was home health care. In those days, it was more palliative care. People were really sick and hospitalized, then they’d come out and have 1 or 2 months to live,” said Fiaño.2
The law brought a large influx of new resources. In FY 1991, Title I provided $87.8 million to the first 16 jurisdictions—much more than the $17.2 million HRSA had been able to make available to 25 jurisdictions the year before. “One day you didn’t have resources, and the next day you had all these resources and a very limited time to expend them,” says Rich Stevens, a community organizer in Miami during the first few years of the Ryan White Program.7 According to Cheek, “in the early days, there wasn’t a lot of guidance from HRSA because it was new to them as well.”1
Shift to Local Stewardship
The CARE Act required that Title I funds be administered by the chief elected official in a jurisdiction, who in most cases delegated responsibility to the local health department. This structure was a major change from HRSA and RWJ demonstration projects, which in some communities had directed funds to local nonprofits rather than local health departments. According to McCarthy, the shift to local government stewardship reflected Congressional intent to increase accountability.
The legislation also required each funded jurisdiction to have an HIV health services Planning Council that had the authority to establish local spending priorities and was mandated to develop a plan for the organization and delivery of Title I–funded services. “The Planning Council took its job seriously in looking at resources outside the Ryan White [Program] to determine how the Ryan White [Program] could be used to fill in the gaps,” says Fiaño of her experience in Seattle. According to McCarthy, many chief elected officials disliked the authority vested in the Planning Council. “At one point someone called because their mayor was going to change the priorities. We had to call the mayor’s office and tell them that if they did that, they would lose the money.”
The Planning Councils themselves were not without their challenges. McCarthy recalled HRSA’s push to require that all planning bodies have by-laws, and Stevens notes that “for the most part, providers dominated the Planning Councils, so they prioritized according to their interest. That had to be corrected in Years 2 and 3, when provider composition had to be curtailed.”
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New Priorities for Distributing Funds
As more jurisdictions qualified for Title I funds, the number of EMAs grew to 25 by 1993 and to 42 in 1995, when Congress prepared to reauthorize the program. That first congressional reauthorization in 1996 reflected the evolution of the epidemic, including the emergence of some treatment options and the experiences of communities and HRSA with the program.