Understanding Experiences, Trends, and Needs in Self-Directed Support Programs

Ellen Mahoney, PI; Kevin Mahoney, Co-PI

In the past ten years the number of self-directed support programs has nearly doubled as the recognition of self-direction as a critically important option for persons with disabilities and their families has increased. However, there is a gap in knowledge of the components of self-direction that caregivers find most useful and the ways self-directed programs might be more responsive to emerging challenges experienced by family caregivers. Moreover, knowledge about additional tools that care managers may need in order to sustain positive caregiver outcomes need to be further explored. Thus, this project aims at supporting caregivers’ well-being and sustaining positive outcomes through well designed self-directed programs that are responsive to caregivers’ ongoing needs and emerging challenges.

The project contains three aims. Aim 1 will explore diverse caregivers’ perceptions of the usefulness, effectiveness and gaps in family support resources in current self-directed support programs across the caregiving trajectory. This will be accomplished through qualitative interviews of family caregivers from self-directed programs around the country, with the goal of informing key stakeholders about the program components and program adjustments caregivers identify as essential, knowledge of family caregivers’ experiences of “complex care” and what facilitates preparedness and support. Aim 1 will also provide insight into questions to ask during Aim 2. Aim 2 will identify national trends in self-directed support by monitoring, tracking and evaluating states’ approaches to support families in self-directed programs. This will be performed in the context of the National Inventory questionnaire of states. Results of Aim 2 will serve as a resource for program administrators and policymakers interested in evaluating trends. Additionally, this aim will serve as an evaluation of the program policies and supports aligned with needs identified by family caregivers, and will identify best practices and challenges in providing family support. Finally, Aim 3 will investigate the experiences of caregivers who provide highly complex care to a family member enrolled in a self-directed support program through qualitative interviews with family caregivers, drawn from R3: Family Member Roles and Well-being in Self-Directed Wavier Programs. Results from this aim will expand the concept of care complexity to include the experience of caregivers in the context of care demands and will provide recommendations about how and when self-directed support programs might intervene to support these caregivers.

Ultimately, this project will extend knowledge of how to enhance the active components of family support in self-directed programs by considering how risk profiles of individual caregivers or subpopulations may trigger and tailor supportive interventions. Increased understanding of current program implementation and the impact of program characteristics and practices on family caregivers will inform training materials that will contribute to the dissemination, training, and technical assistance goals of the National Resource Center.

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