Satisfaction Guaranteed? Improving Developmental Disability Family Support Programs: A Phenomenological Mixed Method Study

Date of Award

2023

Degree Name

Ed.D. in Leadership for Organizations

Department

Department of Educational Administration

Advisor/Chair

Davin Carr-Chellman

Abstract

People with developmental disabilities (DD) overwhelmingly rely on family caregivers to provide the support they need at home and in the community, often because of limited funding, long waiting lists for paid services, and more recently a dangerous shortage of paid caregivers. Family caregivers experience physical, social, and psychological demands of the extended caregiving they provide and have poorer health outcomes, negative impacts on their financial well-being, and higher incidence of stress and depression than non-caregivers. Family Supports (FS) programs provide services and other resources designed to help individuals with disabilities remain living in their family homes (Freedman et al., 2000; Heller et. al., 1999). These programs often offer flexible but limited funding for services and are consumer-directed in that individuals with DD and their families can decide which services they want to access, and in which amounts within their funding allowance. Given the significant demands on family caregivers over the lifetime of a person with a developmental disability, FS programs must be considered a viable option to provide at least some support to people who may be waiting for other funding options. In some states, FS programs may not be available or may be underutilized. This study was designed to understand the factors that influence people to utilize (or not utilize) a FS program, and to measure how useful FS program services are to people with DD and their families. Research questions also asked if there were relationships between satisfaction and demographic characteristics or specific need factors of people served. Using both a phenomenological approach and Andersen’s behavioral model (1995) as a framework, the study employed an explanatory sequential practical action research model, consisting of a quantitative survey followed by qualitative interviews to expand on the quantitative findings. Participants included family caregivers of individuals with DD currently and previously enrolled in a FS program administered by one agency in a large metropolitan area in a Midwestern state in the U.S. Both participants enrolled in the program and those previously enrolled gave similar ratings (helpful or very helpful) to program services, were satisfied or very satisfied with the FS program, and willing to recommend it to others. Participants did give overall higher ratings of service usefulness than non-participants, which may explain why non-participants are no longer enrolled in the program. Program participants specifically rated the services of camp and incontinence supplies as more useful than non-participants, which may have been related to the timing of the research post-COVID pandemic when these surveys were in high demand and low supply. Participants also provided helpful suggestions for FS program improvement to improve ease of access to services, allow for greater self-direction, and include ongoing feedback of caregivers and participants in future FS program decisions.

Keywords

developmental disabilities, DD, Family Support, satisfaction;

Rights Statement

Copyright © 2023, Author

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