It's not so simple: Understanding participant involvement in the design, implementation, and improvement of Cash & Counseling programs

Abstract

For more than three decades, the United States federal government and the states have worked to restructure the long-term care system to be more community based and responsive to personal preferences. Some argue that those who seek such services should be actively engaged in their design (Morris, 2008; Priester, Hewitt, & Kane, 2006). While many who design and implement home and community-based services may believe that participant engagement could be beneficial, most plans move forward with little to no provision for such engagement. The existing literature provides very little insight into the implications of such decisions.

The Cash & Counseling model is one community-based option being implemented in states as a result of a growing demand for personal choice and control in long-term services and supports. Through this model, individuals receive control over a budget allotment in lieu of agency-provided personal care. They are able to hire friends, family, and neighbors as workers as well as to purchase goods and services to assist them to live as independently as possible in the community. As with other community-based programs, the extent of participant engagement varies within Cash & Counseling programs, and there is little understanding of the methods adopted, the outcomes produced, or the factors influencing success.

This study utilized a multi-method qualitative approach to examine participant engagement strategies found within Cash & Counseling programs. Through a web-based survey of program administrators, key informant interviews with national experts, and in-depth semi-structured interviews with state staff, advocates, and program participants within three states, an understanding of existing engagement methods, influencing factors, and perceived outcomes has emerged. This research indicates that there are a multitude of interdependent factors influencing engagement that are specific to the processes utilized, persons involved, and environments within which the engagement takes place. Results of this study are useful to policymakers as they make decisions to fund, design, and improve Cash & Counseling programs, and to program participants and advocates who seek a role at the policy table. Findings may also provide valuable insights to other public policy domains for which stakeholder engagement is of interest.