“Forever Children” and Autonomous Citizens: Comparing the Deinstitutionalizations of Psychiatric Patients and Developmentally Disabled Individuals in the United States

Bagnall, Adrianna Marie; Eyal, Gil

We compare the deinstitutionalization of psychiatric patients and the developmentally disabled in the United States and demonstrate that there were two path-dependent processes with significant qualitative and quantitative differences, ultimately leading to better outcomes for developmentally disabled individuals.

Using secondary literature, we construct a sustained comparison of the two processes in terms of outcomes, timing, tempo, extent, funding, demographic composition, and investment in community services. We then reconstruct the strategies of de-stigmatization and framings of moral worth deployed in the two cases, analyzing their effects on deinstitutionalization in terms of conceptions of risk, rights, and care.

Deinstitutionalization began later for developmentally disabled individuals than for psychiatric patients, and was a more gradual, protracted process. It was not driven by fiscal conservatism, discharges, and the trans-institutionalization of the senile aged, as was deinstitutionalization for psychiatric patients, but primarily by the prevention of institutionalization of young children, and increased investment in infrastructure. Consequently, the deinstitutionalization of the developmentally disabled was far more thorough and successful. The process was shaped by the framing of the developmentally disabled as “forever children” by parents’ organizations that demanded a balance between autonomy, protection, and the provision of care. In contrast, the deinstitutionalization of psychiatric patients was shaped by their framing as autonomous citizens temporarily suffering from “mental health problems” that could be prevented, treated, and cured. This frame foregrounded the right to choose (and also refuse) treatment, while undervaluing the provision of care.


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Advances in Medical Sociology

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Emerald Group Publishing Limited
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February 12, 2017