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Informing and Equipping Parents of People With Intellectual and Developmental Disabilities
Carly B Gilson1, Lauren K Bethune1, Erik W Carter1
1Carly B. Gilson, Lauren K. Bethune, Erik W. Carter, and Elise D. McMillan, Vanderbilt University.
Abstract:
The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well-established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer to access resources. Our study examined the resource needs of 1,738 parents of children and adults with IDD in the state of Tennessee. Most parents reported limited familiarity with programs across every domain (e.g., residential, vocational, postsecondary). The extent to which parents indicated various types of information would be helpful varied by demographic factors (e.g., daughter or son's age, disability diagnosis, socioeconomic status), as did the avenues through which they indicated they were most likely to access information and resources. We offer recommendations aimed at equipping parents with relevant supports and resources to guide their son or daughter's journey across the lifespan.
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