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Centering the Voices of People with Intellectual and Developmental Disabilities about Family Support

October 12, 2022 @ 12:00 pm - 1:00 pm

The perspectives of people with intellectual and developmental disabilities (IDD) are missing from the family support literature. The purpose of this study was to center the voices of people with IDD to learn about family support from their viewpoint. Two main research questions were explored: (1) What types of support do people with IDD receive from their families?; and (2) What types of support do people with IDD provide to their families? This research study applied a conceptual framework that incorporated life course theory grounded in a Disability Studies approach using participatory action research. The participatory action research (PAR) process included a Community Advisory Committee comprised of five adults with IDD who guided the research. Accessible methods were used to ensure the voices of people with IDD were included and centered in the research. Thirty virtual interviews were conducted using the dyadic interview method with 10 adults with IDD and 10 key support people who they chose. Two primary themes emerged from the data. First, the theme of social-emotional support encompassed ways people with IDD both received and provided companionship support and emotional support to their families. Second, the theme of independent living support included ways people with IDD received and provided instrumental support and information support from and to their families. There are two significant areas for implications from this research study. First, that families provide a vast amount of support to people with IDD and therefore more focus should be on ways to support these families. Second, people with IDD provide important support to their families that should be acknowledged and valued for their reciprocal contributions. This study provides recommendations for changes in systems and policies as well as future directions in research.


Katie Arnold, Ph.D., is passionate about supporting people with disabilities and their families to live full lives. Katie is dedicated to community collaborations through her role as Associate Project Director at the Institute on Disability and Human Development at University of Illinois at Chicago (UIC), Illinois University Center of Excellence in Developmental Disabilities. Katie has helped to grow the sibling movement across the country in her role as Executive Director of the Sibling Leadership Network (SLN), a national nonprofit with state chapters that provides information and support to siblings of people with disabilities throughout the lifespan. Katie grew up in New Jersey as the second oldest of four, including her sister with intellectual disabilities. Her sibling experience has shaped her worldview in many ways.

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