Student Theses

Date of Award

Summer 8-30-2026

Document Type

Dissertation

Language

English

First Advisor

Dr. Audra Watson

Second Advisor

Dr. Marquitta Speller

Third Advisor

Dr. Francine Almash

Abstract

People with intellectual disability deserve a system that offers flexible, timely, and person-centered support — one that is innovative, sustainable, and holistic in enabling them to live fulfilling lives. This qualitative study, grounded in Critical Participatory Action Research (CPAR), examines how people with intellectual disability experience participation in decision-making within New York State's disability service system. By centering lived experience, the study identifies factors that facilitate or hinder participation in decision-making and examines structural, social, and policy-related barriers that limit agency. Through six focus groups and a Photovoice project with self-advocates receiving OPWDD services, participants described systemic barriers that limited their voice in planning and policy processes. Findings reveal that exclusion from governance and service planning contributes to experiences of loneliness, diminished recognition, and reduced civic participation. The study proposes the Belonging and Voice Framework for Disability Policy — an original participatory governance framework that embeds lived experience in disability policy design and advances recommendations for a more equitable, inclusive, and sustainable service system.

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