Date of Conferral

1-6-2026

Date of Award

January 2026

Degree

Ph.D.

School

Public Policy and Administration

Advisor

Lori Salgado

Abstract

Current estimates reported by the National Institute of Health suggest that between 1.4 and 2.2 million children in the United States have some form of intellectual disability. These children need caregivers, yet in the literature there is a lack of studies focusing on the experiences of caregivers raising children with intellectual disabilities. Further, there is a lack of public policies and programs for Washington, D.C. caregivers. The purpose of this general qualitative study was to explore the lived experiences of these caregivers in Washington, D.C. and to identify what policies, programs, and services are needed to support them. Guided by the social model of disability and critical disability theory, this study was conducted to answer two questions: (a) How do Washington, D.C. caregivers of a child with an intellectual disability describe the experience of providing adequate care under the current laws, policies, and programs available to them? and (b) What policies, programs, or services do these caregivers recommend to inform future policy change? Semi structured interviews were conducted with 10 caregivers residing in Washington, D.C. Thematic analysis was used to analyze the data using Braun and Clarke’s six-step process. Five major themes emerged: (a) the emotional weight of caregiving; (b) systems that fall short; (c) community and connection; (d) love, joy, and purpose; and (e) a call for policy change and inclusion. Positive social change may result from elevating caregiver voices in policy creation, particularly in under-resourced communities like Wards 7 and 8 in Washington, D.C., where future research is needed to address deeper disparities.

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