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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.

At least 43.5 million family caregivers are providing supports and services to older people and others with disabilities who want to remain in the community. Research on the needs of these family caregivers is growing but far less is known about funding sources for the supports these informal caregivers need. Medicaid is the largest public payer for home and community-based supports, but, other than the seminal work done at AARP’s Public Policy Center (Kelly, Wolfe, Gibson & Feinberg, 2013), the types of supports available under various Medicaid funding authorities in state Medicaid programs around the country has received scant attention. Examining data from 138 state Medicaid 1915c HCBS waivers for people who are self-directing their supports and services, the research presented in this paper examines state Medicaid provisions in eight areas where family caregivers themselves have indicated they could use help. Data show that the majority of these supports are limited to programs serving children, adults with intellectual and developmental disabilities, and people with particular conditions such as autism or TBI. After focusing on states with promising approaches, this poster examines provisions discussed with policymakers and advocates at a June 18, 2018 state of the science meeting examining innovative approaches ranging from care manager training on family needs, to assessing family caregiving needs and then having Medicaid funding to address those very needs. Attention is also given to programs that pay family caregivers or make registries of potential workers available.

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 a budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment (CCDE) documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained. This paper reanalyzes 76 case studies from the CCDE to, for the first time gain an understanding of what those unmet needs are, who sees them, and what participants, caregivers and support brokers think might reduce this problem. Using a collective or multiple case study approach to understand this phenomenon, unmet needs were sorted into five categories using real life experiences of respondents. Unmet needs for assistance in managing the employer and budget tasks of self-direction were also captured.This paper discusses situations where the clinician researchers documented needs that were not expressed by the care recipients and provides a picture of where and why unmet needs remain.The paper concludes with strategies for reducing unmet needs and training future social workers.

The “support broker” (also called “coach” or “counselor”) is an essential element of participant directed (PD) programs. The primary function of the support broker is to help participants develop the skills to self-direct. This study explored caregiver perceptions of characteristics of effective support brokers. Family caregivers (n=53) with a range of developmental, physical, and aging-related disabilities enrolled in PD programs were interviewed (age 34–78, M 59.9 ± 8.8; male 19%; spouse 17%; parent 60%). Qualitative content analysis revealed rich information about the characteristics of supportive support brokers, and also about support broker characteristics that were not supportive. Support brokers directly influenced many of the challenges caregivers identified. A responsive, imaginative, and involved support broker was identified as a major source of effective support. Conversely, frequent support broker turnover, limited knowledge and involvement, and the perception that the support broker was simply there to “check boxes” became sources of additional stress. Support brokers are uniquely positioned to help caregivers navigate the complexities of the healthcare system, thereby decreasing stress and strain. For example, many of the roadblocks that caregivers identified as difficult could often be negotiated by a support broker. Support brokers can serve as an avenue for caregivers to find out about additional supports within the PD program, as well as organizations outside of PD, such as disease-specific support groups, which caregivers identified as an additional source of support. This research is part of the Family Support Research & Training Center.