A tale of two deinstutionalizations

• In Event: How are families navigating fragmented social support systems?

Abstract

U.S. policymakers have long 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 service needs met in their local community. Persons with both sets of disabilities benefitted from deinstitutionalization. Yet deinstitutionalization proved tangibly more successful in the domain of IDDs.

We explore political, programmatic, and policy factors that underlay this disparity. States prioritize Medicaid services that qualify for Federal match. In the case of SPMI, these services are largely clinical, often funded through 1115 waivers which are at least nominally constrained by budget neutrality. In contrast, IDD services rely more heavily upon 1915 waivers, which do not face these same budgetary requirements, and can thus more-effectively address broader needs.

We document marked differences in social and political standing between the two groups, exemplified by tangibly greater community resistance to the siting of residential behavioral health services than for comparable IDD services.

Some differences also stem from differences in the conditions themselves. IDDs are typically diagnosed in childhood, and are often fairly stable over the life course. Most adolescents and young adults with IDD continue to live in their childhood family homes. This pattern has led to the emergence of persons with IDD and their families as a key constituency. Such political supports provide greater space for increased expenditures, and greater accountability for visible service gaps or low service quality. 

In contrast, persons with SPMI carry stigma that is associated with the desire among many Americans to keep their distance. Public understanding of mental illness has improved. Yet a substantial plurality of Americans (31%) has consistently held the belief that mental illnesses are consequences of a bad character. The desire for social distance has also persisted, with at most 52% of Americans willing to socialize with a person with mental illness and 35% interested in being friends with someone with a mental illness. Those perceptions have colored support for treatment of mental illnesses over time, and particularly reduced public support for policies that could increase costs or site pertinent services in local communities.People with IDD also benefit from more coordinated and unified financing and governance structures, within which Medicaid HCBS provides the bedrock over which other services are layered.  For the SPMI population, that foundation does not exist.  Instead, this population is served by disparate, uncoordinated programs and interventions with varied accountability and coverage, with many publicly-supported efforts deprioritizing persons experiencing most severe illness.States have faced many challenges in meeting the full spectrum of needs experienced by people who live with IDD and SPMI. Addressing these challenges requires states to build sustainable, capable infrastructures to ensure that services are available to those who need them, and that services are delivered well. A key political and programmatic contrast also emerged. IDD services were implemented and judged by political stakeholders based on their ability to improve lives. These services were not expected or required to stabilize or reduce public spending.

Author

• Harold Alexander Pollack, University of Chicago
  Presenting Author