Advocacy for Autonomy: Protecting Individuals with Disabilities' Right to Choice Through Self-Directed Services

Date of Award

5-9-2026

Degree Name

Ed.D. in Leadership for Organizations

Department

Department of Educational Administration

Advisor/Chair

Davin Carr-Chellman

Abstract

This qualitative study examines the systemic barriers families of individuals with intellectual and developmental disabilities (I/DD) face when trying to access self-directed Medicaid Home and Community-Based Services (HCBS) within a Northeastern region. Based on Critical Disability Theory, the analysis explores how recent policy changes enacted by the Office for Developmental Support (ODS) shape ideas of autonomy, choice, and service denials as civil rights issues. Through a phenomenological review of semi-structured interviews with families and advocates, the study assesses the political and ethical implications of these policies. The findings highlight the challenges of navigating confusing bureaucratic systems, strengthen families’ advocacy skills, and propose practical policy suggestions to create a more just, rights-respecting support system that preserves the dignity and self-determination of individuals with I/DD.

Keywords

Aging, Individual and Family Studies, Legal Studies, Organization Theory, Social Research

Comments

OCLC No. 1591829568

Rights Statement

Copyright 2026, author.

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