UNMET NEEDS IN SELF-DIRECTED HCBS PROGRAMS

Unmet Need for long-term services and supports has been linked to a variety of harmful health outcomes. One suggested strategy for ameliorating unmet need is to give participants control of the budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained. This paper, drawing from 76 ethnographic case studies of Cash and Counseling participants, gives us an understanding of what those unmet needs are, who sees them, and what participants and their family caregivers see as possible remedies. Certain areas of unmet need identified in this study stand out. These included health-related problems, environmental issues, and the caregivers’ need for relied. The paper concludes with implications for care integration and the training of support brokers as warnings about reducing budgets.

PARTICIPANT VIEWS OF THE TASKS AND CHARACTERISTICS OF SUPPORTIVE SUPPORT BROKERS IN SELF-DIRECTION PROGRAMS

This qualitative study draws on 76 ethnographic case studies with Cash and Counseling participants, examines what participants and their caregivers saw the support broker doing, and looks at what the participants found helpful and less than helpful. Participants and their caregivers saw support broker duties as Coaching, Problem Solving, Advocacy and Monitoring. Equally important was how the support broker performed these roles. Six attributes that mattered to participants were: Familiarity, Supportive Relationship, Proactive Engagement, Responsiveness, Knowldge and Cultural Friendliness. These findings from the participant and caregiver perspective have great import for the training of present and future care managers and support broker, and have implications for regulatory and even licensure requirements. These results can be a first step in constructing a quality framework for self-directed supports and services.

The Long-Term Effects of Participant Direction of Supports and Services for People With Disabilities

Numerous studies have demonstrated the short-term effectiveness of the Cash and Counseling model option of participant-directed home and community-based personal care service programs for Medicaideligible recipients with disabilities requiring long-term care. However, long-term experiences with participant-directed services have yet to be examined for these individuals. We addressed this gap in the literature through participatory action research and qualitative content analysis. Working together as coresearchers with members of the National Participant Network, a peer organization for people interested in or enrolled in participant-directed services, we interviewed 17 adults enrolled in one state’s Cash and Counseling-based program. Participants’ ages ranged from 40 to 83 years, had been enrolled for at least 5 years, and acted as their own representative within the program. Our major findings show (a) the program’s flexibility allowed for adaptation to meet participants’ changing needs over time and (b) that program attendants helped connect participants with community in multiple ways. In this article, we provide important policy and practice implications for participant-directed programs for people with disabilities.

Where Are They Now? Cash and Counseling Successes and Challenges Over Time

The positive results of the Cash and Counseling Demonstration and Evaluation (CCDE) led to the funding of a replication project that included 12 more states in 2008. Since then, the political and economic environments have changed. The authors sought to investigate how well the 3 original and 12 replication CCDE programs are coping with current challenges and how their experiences may inform the growth and sustainability of emerging participant-directed programs. Semistructured telephone interviews were conducted with the 15 Cash and Counseling state program administrators. Key topics addressed included successful aspects of state programs, biggest challenges for each program, and information program administrators would like to learn from state colleagues. Themes related to budget issues (e.g., staff shortages and program funding cuts) and non–budget-related issues (e.g., understanding of program operations) emerged from the interviews. State program administrators also discussed program successes. To promote the sustainability and growth of participant-directed programs, existing participant-directed programs should be tied to national policy trends as well as review whether or not the programs address participant-directed principles. The development of new participant-directed programs should be based on other states’ experiences as discussed in this article.