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Mandating Home and Community-based Services (HCBS): A Situational Analysis of the Failures (and Successes) of Medicaid Community-based Attendant Services and Supports Legislation

Abstract

As of the introduction of the Community Choice Act of 2007, people with disabilities and others who use Medicaid home and community-based services have been advocating for the passage of a federal bill to mandate community-based attendant services and supports (CASS) for over a decade. Eleven such bills to mandate Medicaid CASS were introduced in six successive Congresses between 1997 and 2008 and none have passed into legislation. Although this lack of passage is perceived as failure to many, I argue that there are many successes to be found in the story of these eleven bills to mandate Medicaid CASS.

I entered the social arena to mandate Medicaid CASS through forty-four primary interviews with representatives of nine overlapping social worlds, many of whom had testified before Congress on this issue. Additionally, I used the texts of the eleven bills and other key documents to explore the social processes circulating in this arena.

Using mapping techniques from situational analysis and the inductive data analysis processes from grounded theory, I explored four different processes and their role in facilitating success. By analyzing the substantive changes in each version of these bills to mandate Medicaid CASS, I documented both the significance of consistent reintroduction and a trend toward consumer direction and cross-disability politics. Second, through an analysis of the fifteen distinct phrases used to refer to a very similar "sets of activities" that would be mandated by these bills, I reframe CASS as a politically important concept to reduce interstate variation in access. Third, I provide a comparison of the two cost estimates of these bills, highlighting the relationship between "the woodwork effect" and unmet need. Lastly, I address the new ways in which many groups who are potential users of Medicaid CASS are working together and some of the challenges that remain unaddressed.

Using the bills to mandate Medicaid CASS as an example, I conclude by offering a new model of the development of social policy based on the ecology of fruit-bearing trees. In this model, I encourage readers to relish in the success of the blooms and the processes that sustain them rather than (or in addition to) lamenting the lack of fruit.

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