Opening the Door Wider to Community Support of People With Serious Mental Illnesses: What States Can Learn From the IDD Experience

Policy Points The federal government should provide states with authorities under Medicaid that allow greater use of home and community-based services for people with serious and persistent mental illness. This requires deemphasizing authorities that require budget neutrality in a post-institutionalization world (Section 1115 waivers) and relying on those with greater budget flexibility (Section 1915 waivers). The federal government, in its design of new mental health programming, would make it most effective if it establishes regulations and oversight that permit states to effectively pursue policy intents. When federal programs that intend to deal with consequences of serious and persistent mental illness are provided through broad authorities (e.g., 988 call lines), states should take greater care to create expectations and lines of accountability that align with federal intent and limit tendencies toward mission drift.

Since the early 1960s, US policymakers have sought to assist persons living with intellectual and developmental disabilities (IDDs) and persons living with severe and persistent mental illness (SPMI) to live on a human scale with their clinical and service needs met in their communities.

We review this history, including the accomplishments and shortcomings of these efforts.

People with both sets of disabilities and their families have benefited from deinstitutionalization. Yet deinstitutionalization proved tangibly more successful in assisting people with IDDs and their families than have comparable efforts that sought to assist people with SPMI and their families.

These contrasting histories offer instructive lessons for state policymakers and others seeking to improve services for people living with SPMI.