The Transformation of Public Sector Intellectual/Developmental Disabilities Programming

Programming for persons with intellectual and developmental disabilities has shifted from state institutional care to community-based services, facilitated by federal government support as well as services delivered by nongovernmental organizations (NGOs). For persons with mental retardation, epilepsy, cerebral palsy, and autism, these programs not only have moved into the health care orbit but also are in search of more holistic ways to maintain persons with their families and in communities. Three major forces have led to this shift: federal financing, particularly under Medicaid; integration of services around clients; and externalized service delivery by NGOs. These are increasingly connected forces, facilitated particularly by the Medicaid Home and Community-Based Services Waiver. They have transformed state-operated systems. Increasingly, states are working with NGO case management and service delivery providers to organize and integrate services to face this continuing challenge.