By Christian Meyer, MSW, LSW
The Willowbrook State School in New York was an infamous institution that locked away nearly 6,000 children, teens, and adults with intellectual and developmental disabilities (IDD) from 1948 to 1987. During its time, it was the largest facility of its kind and boasted an enormous publicly funded budget, although conditions in Willlowbrook were sordid, crowded, and inhuman. In his 2021 book Public Hostage, Public Ransom, William Bronston, a doctor who worked there and a tireless advocate to improve conditions, described the institution as being a warehouse and a site where those admitted would go to die with no plan of exit to community placement. The conditions of Willowbrook, revealed to the public in 1972 via an expose by reporter Geraldo Rivera, were not an outlier of publicly-funded services for people with disabilities, but a vivid microcosm of a pervasive public logic surrounding the value and worth of folks with disabilities. That is the belief that those with disabilities, whether it be those with mental illness, developmental disabilities, or physical disabilities, should be hidden from the public eye by incarceration in a range of facilities: residential schools, psychiatric hospitals, and institutions, to name a few. Advocacy pushing against this logic helped to shift the course of supports and services for the community as well as reduce longstanding stigma.
With this history in view, the good news is that today most individuals with IDD and folks across the disability spectrum live in the community independently, with family, or in small agency-operated group homes. However, a smaller percentage, around 10% by some estimates, continue to live in nursing homes or state-operated facilities, like Willowbrook. This segment of the population seems to have been left behind by the home-and-community-based services (HCBS) system, which includes having access to in-home personal support, community day programs, small group home placement, and specialized medical care. In my opinion as an advocate and a professional, this group has not been able to access HCBS due to their complex needs that the system has not prioritized in policy or funding outside of an institutional setting. These “complex needs” include those with an IDD and mental illness, IDD and special healthcare needs, and individuals with IDD who are also aging. The legacy of Willowbrook, then, continues into our current day as evidenced by continuing to incarcerate those with the most complex needs in facilities that have demonstrated time after time that they do not work, are breeding grounds for abuse, and dehumanize those that live there. Illinois currently has 7 such institutions, called State-Operated Developmental Centers (SODCs), each of which have been open for 50 plus years. This represents a pervasive stigma that still bleeds into the way that care and services are provided today. The belief underlying this stigma posits that institutions are the only model by which people with complex needs can get their medical, safety, and daily-living needs met.
Although there is some truth to this belief, considering that there are few community-based services available to those who have complex needs (i.e. can manage medical complexity in a group home or family home environment), it is vital that new models be developed that will put institutions out of business for good. Dr. Liat Ben-Moshe describes this idea in her book Decarcerating Disability in the following quote: “Earlier attempts to achieve change…through exposes or litigation, for example….were not successful because they did not develop an alternative logic to institutions (p. 69).” I believe that Illinois, and every state for that matter, should work towards serving those with the most complex needs in the community by replacing the very idea of segregationist and prison-like settings as a care option. There are several movements that have been piloted in other fields (aging) as well as in the mental illness and IDD spaces that I envision could help to shift the narrative further to eradicate the needs for institutions that exist in the shadow of Willowbrook’s legacy. If models from other fields could be considered and adapted to serve those who also have IDD, then I believe that the demand for institutional care will diminish over time. Please see links to a few of these innovative models below:
The Greenhouse Model: A care model oriented towards older adults in need of skilled nursing (with significant medical needs) or memory care. It offers 24/7 365 days a year skilled nursing to individuals in small cottages in the community and equipped with necessary medical equipment. Those that live there also have opportunities to engage in social life with others in the community and guide the rules/expectations of the community. https://thegreenhouseproject.org/
Clubhouse Model: A community care model for those with serious mental illness (SMI) that involves community-centers operated by and for individuals with lived experience. https://clubhouse-intl.org/what-we-do/what-clubhouses-do/ https://fountainhouse.org/about/clubhouse-model
START Model: Stands for Systemic, Therapeutic, Assessment, Resources, and Treatment. This crisis prevention and intervention model designed to support those with dual diagnosis of IDD and mental illness in their current placements to avoid hospitalization or institutionalization. https://iod.unh.edu/national-center-start-services
References
https://risp.umn.edu/products/key-questions/where-do-people-live
https://www.nyc.gov/site/mopd/events/our-history.page?slide=10
https://www.disabilityrightstn.org/willowbrook-51-years-later-a-look-at-history-and-modern-advocacy/
