From Congregate to Community: Policy, Leadership, and Organizational Strategies to Advance Services for Adults with Disabilities

• In Event: Grassroots Governance, Collaboration, Practitioner Discretion

Abstract

Federal and state policy shifts over the past decade have increasingly prioritized Home and Community-Based Services (HCBS) for adults with intellectual and developmental disabilities (IDD), recognizing that inclusive, individualized supports lead to improved quality-of-life outcomes. Yet, despite 64% of Medicaid long-term services and supports funding now flowing to HCBS, many provider organizations continue to operate congregate service models (e.g. group homes or facility-based services) that limit personal autonomy, community participation, and equitable access for people with intellectual and developmental disabilities. 

This mixed methods research study used a Critical Disability Theory and Transformational Leadership Theory lens to investigate the organizational and leadership characteristics, internal processes, and systems-level factors that enable or impede the transition of service providers to individualized, inclusive supports. The research followed an explanatory sequential design consisting of a national survey (n = 181) and in-depth interviews with executive leaders (n = 15) of provider organizations across the country offering varying levels of individualized, community-based services. Quantitative analyses identified significant associations between inclusive service provision and internal organizational practices, including participatory leadership, data-informed decision-making, diversity and equity strategies, and workforce investment. Qualitative findings revealed that transformational leadership, organizational mission alignment, and external policy incentives (e.g., rate increases, HCBS compliance standards, and systems-level technical assistance) are central to enabling sustainable transitions away from congregate models. 

Importantly, the results showed that organizations delivering more than 70% inclusive services were significantly more likely to promote autonomy, choice, and community engagement, and were more likely to demonstrate higher performance in areas like DEI, staff support, and transformational leadership. Structural and financial disincentives, lack of housing and transportation infrastructure, and workforce instability were cited as major barriers to change. Findings highlight the critical role of collaborative leadership across provider agencies, state systems, and advocacy organizations in navigating structural, financial, and workforce challenges. Leaders of high-performing organizations shared strategies for shifting internal culture, restructuring services, and leveraging policy incentives to align their operations with principles of inclusion.  

The results of this study highlight policy implications and offer evidence-based recommendations for systems leaders, policymakers, provider agencies, and advocates. Key recommendations include strengthening Medicaid policies that incentivize inclusive models, embedding inclusion into compliance frameworks, increasing investment in workforce development, and ensuring meaningful participation of people with disabilities in leadership roles. The findings also reinforce the need for participatory leadership practices and systemic collaboration across housing, healthcare, transportation, and disability services. As states implement the HCBS Final Rule and respond to workforce shortages and waitlists, there is an urgent need for policy that align funding, technical assistance, compliance, and infrastructure development with community inclusion.  

By centering both policy levers and organizational leadership in the analysis, this research contributes to the broader dialogue on how systems reform can advance civil rights, equity, and community belonging for people with disabilities. Transformation toward inclusive, individualized services must be driven by both values and leadership and also by state and federal policies that align funding, accountability, and infrastructure with the promise of community inclusion for all people with disabilities. 

Authors

• Cory Gilden, University of Delaware
  Non-Presenting Co-Author

• Monica Doraida Mesa-Alvarez, University of Delaware
  Presenting Author