Institutionalization and Incarceration of Disabled People in the U.S.
Institutionalization and Incarceration of Disabled People in the U.S.
The inhumane treatment of disabled people that institutional and carceral environments foster is a long-standing problem in the United States. While the majority of large state run disability institutions have been shut down, the U.S. COVID-19 outbreak beginning in 2020 highlighted how congregate settings such as nursing homes and detention facilities are a danger to the safety and well-being of their inhabitants. Institutional and carceral environments in the U.S. gravely threaten the lives of disabled people through abuse, neglect, and conditions that promote disease spread such as COVID-19.
Prior to the 1970s intellectually and otherwise disabled people were routinely committed to large U.S. state run institutions, often deceptively called schools (Fisher, 1996). Willowbrook State School in Staten Island, New York was the largest of these institutions at the time and was severely understaffed due to extreme budget cuts. The disabled people in Willowbrook were subjected to heinous abuses, neglect, and mistreatment.
Under sustained activist and legislative pressure these abhorrent institutions began to be shut down in the 1970s (Shapiro, 1993). The tide turned to favor increased home and community based services (HCBS) to house and support disabled people. However, many states failed to meet the demand to absorb the number of people with high care and support needs released from state institutions. Medicaid and Medicare, which were created in 1965, restricted coverage only to hospitals and nursing homes. Consequently, many disabled people were funneled into nursing homes despite being fully capable of living on their own with sufficient supports.
Shapiro (1993) writes, “Nursing homes have become the new black holes of isolation and despair for young people with disabilities” (p. 240). He explains that, despite the decrease of the number of disabled people in state institutions between 1971 and 1990 from 195,000 to 88,000, “the total of developmentally disabled younger people—from eighteen to sixty-four years old—in nursing homes grew by a third in that same period” (Lakin, n.d., as cited in Shapiro, 1993, p. 241). As is still the case today, nursing home profit motives and governmental failure to allocate encough HCBS funding gave many disabled people no choice but to remain in institutions.
While long-term services and supports (LTSS) to provide disabled people with the resources they need to live in the community have increased, they are still critically lacking. Even so, Ben-Moshe (2017) notes that as of 2009, “an estimated 86.4% [of people with a developmental disability label] lived in community settings of 15 or fewer people, and 73.1% lived in residential settings with six or fewer people” (p. 122). The number of people living in state institutions with more than 16 people was also down to 33,732 in 2009. Similarly, by 2000 less than 100,000 people were in large state mental hospitals, down from 559,000 people at the peak of psychiatric institutionalization in 1955.
However, while these numbers are promising and indeed a vast improvement for many, the numbers of disabled people who are incarcerated have continued to rise (Ben-Moshe, 2017). Similar to the diversion of disabled people from large institutions to nursing homes that Shapiro (1993) discusses, some of the disabled people who otherwise would have been in a mental hospital or other state facility are instead incarcerated (Ben-Moshe, 2017). This is only part of the reason for the increase in U.S. incarceration, though.
Ben-Moshe (2017) contends that private for-profit nursing and group homes, psychiatric hospitals, and carceral facilities are profit, not need, driven. Just as segregating disabled people to institutions frequently further disables them and is then used to justify the inflated need for these institutions, countless so-called criminals are manufactured by the criminal justice system under the false premise of a need for correction and reform in order to protect the public. The vast majority of these “criminals” are disabled people, poor people, and Black, Indigenous, and other people of color (BIPOC)—and often disabled, poor, and BIPOC. Black people are especially targeted for incarceration due to rampant systemic racism and anti-Blackness.
Racism, Ableism, and Incarceration During COVID-19
A prime example of the insidious racism and ableism propelling incarceration rates is the experience of Grace, a Black, 15-year-old disabled young woman in Pontiac, Michigan (Cohen, 2020a). Grace’s only infractions were physical altercations with her mother resulting in assault charges and theft charges for stealing a classmate’s cell phone. Despite the minor nature of these incidents and the uncontrolled spread of COVID-19, in May 2020 Judge Mary Ellen Brennan remanded Grace to juvenile detention for approximately five months because Grace failed to do her homework and thus, according to Brennan, violated her probation.
Brennan’s decision to send Grace to a detention facility was contrary to the Michigan governor’s executive order to release juveniles in detention and avoid detention for probation violations in light of the risks of COVID-19 (Cohen, 2020a). Grace, who had a documented disability of Attention Deficit Hyperactivity Disorder (ADHD) as well as a mood disorder, was struggling to focus on completing her schoolwork after students were abruptly switched to online learning due to COVID-19. Grace had had a few previous incidents that involved law-enforcement but she had no new incidents, and nothing that rose to the level of being “a threat to (the) community” (section 1), as Brennan wrote in the ruling. Reports from her teacher reflected that Grace was motivated to succeed and her special education teacher was working with Grace to help her adapt to the changes to remote learning given her disability.
However, the court caseworker hastily requested that Grace be detained without first contacting her teacher or any awareness of Grace’s disabilities and needs for accommodations to complete her schoolwork (Cohen, 2020a). As a young, Black, disabled woman Grace was made into a threat as a “criminal” while the very real dangers of COVID-19, severe emotional distress, and academic set-backs that incarcerating her posed were not deemed important. According to sources contacted by Cohen (2020) there are no other known cases in the U.S. of a youth on probation being sent to the juvenile facility for not completing schoolwork during the pandemic.
Systemic racial bias was very likely at play in how Grace was treated. Cohen (2020a) points out that from March 16, 2020 to June 29, 2020 in the predominantly white Oakland County where Grace was sentenced “[out of] at least 24 delinquency case[s]…more than half involved young people who are Black, like Grace” (section 6). This was during the time period when the courts were instructed to decrease juvenile facility placements. Black youth, who account for approximately 15% of the county’s youth, also made up over 40% of those involved in the county’s juvenile justice system between January 2016 and June 2020.
Fortunately, due to public outcry, pressure, and protests Grace was released after 78 days at the juvenile detention facility (Cohen 2020b). Even so, the trauma of the incarceration remains for Grace and her mother and has put Grace even further behind in school. Grace is also only one of numerous Black youth who are disproportionately incarcerated in Michigan. The blatant disregard for the impacts of Grace’s disability begs the question of how many of these incarcerated Black youth are disabled as well and, like Grace, are unjustly punished.
Nursing Home Racial Disparities
Incarceration is not the only context in which racial disparities are evident in who is most in danger from institutionalization, as evidenced by COVID-19 outbreaks. According to data from 22 of the states with the greatest spread of COVID-19, collected in May 20202, in nursing homes throughout the U.S. those that have 25 percent or more Black and Latinx inhabitants are on average twice as likely than nursing homes with predominantly white inhabitants to have at least one COVID-19 infection (Gebeloff et al., 2020). Even when risk factors such as lower government ratings, nursing home size, and location were accounted for the disparity in outbreaks in nursing homes with more Black and Latinx inhabitants remained.
It is reported that, at minimum, 20 percent of COVID-19 deaths are from nursing homes (Gebeloff et al., 2020). Given the findings that COVID-19 infections are twice as likely in nursing homes with large Black and Latinx populations, it follows that Black and Latinx nursing home deaths account for a large percentage of all U.S. nursing home deaths. This is not surprising given that infection rates and deaths due to COVID-19 have disproportionately affected BIPOC populations in general. These disparities are evidence of blatant systemic racial and ethnic injustices targeted at BIPOC, especially those who are disabled.
Compared to nursing homes with mostly white inhabitants, those with large Black and Latinx populations are on average more crowded and have lower government ratings (Gebeloff et al., 2020). Additionally, 18 or more states have instituted protections from pandemic related legal actions against nursing homes that make them immune from most prosecution or censure (Wong, 2020). These protections not only undermine nursing home accountability, they also stymie investigations and pressure for increased protective measures in many facilities. Additionally, COVID-19 precautions that keep visitors away from nursing homes mean that there is more opportunity for other violations to go unnoticed.
Wong (2020) writes, “By design, institutions do not allow us to know about the conditions of the people incarcerated inside. They are allowed to operate without transparency and accountability. They render people as less than human, subject to exploitation, abuse, and neglect” (para. 7). The risks for abuses in nursing homes are increased by the COVID-19 pandemic and threaten the well-being and lives of many their disabled inhabitants above and beyond the fear of contracting COVID-19.
Conclusion
The treatment of disabled people, and especially BIPOC and multiply marginalized disabled people, as disposable is a reprehensible legacy in the U.S. that many would like to ignore or dismiss. Even with all of the advances in disability rights under the Americans with Disabilities Act, countless disabled people continue to be subjected to nursing homes, overcrowded group homes, mental institutions, and carceral facilities. From Willowbrook State School and other institutions like it the dangers of committing disabled people to congregate settings are well known. These dangers are exponential when institutions, and their transgressions, are hidden from or dismissed by policymakers and the public. The deaths and outbreaks of the COVID-19 pandemic have sadly brought needed attention to some of these disparities and injustices. Yet without ongoing pressure and action to support disabled people to live well in the community, unjust institutionalization and incarceration of disabled people will no doubt continue.
Read this powerful April 25, 2022 Buzzfeed News article, “Profit, Pain, and Private Equity” for more about nursing home abuse, neglect, and deaths.
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Sources
Ben-Moshe, L. (2017). “The institution yet to come”: Analyzing incarceration through a disability lens. In L. J. Davis (Ed.), The disability studies reader (5th ed., pp. 119–130). essay, Routledge, an imprint of the Taylor & Francis Group.
Cohen, J. S. (2020, July 14). A teenager didn't do her online schoolwork. So a judge sent her to juvenile detention. ProPublica. Retrieved March 13, 2022, from https://www.propublica.org/article/a-teenager-didnt-do-her-online-schoolwork-so-a-judge-sent-her-to-juvenile-detention
Cohen, J. S. (2020, July 31). Grace, Black Teen jailed for not doing her online coursework, is released. ProPublica. Retrieved March 13, 2022, from https://www.propublica.org/article/grace-black-teen-jailed-for-not-doing-her-online-coursework-is-released
Fisher, J. (Director). (1996). Unforgotten: 25 years after Willowbrook [Film]. City Lights Pictures. United States. Retrieved March 2, 2022.
Gebeloff, R., Parker, M., Yu, E., J. Fortier, Dance, S., Yuorish, K., Smith, M., Richtel, M., & Ivory, D. (2020, May 21). The striking racial divide in how covid-19 has hit nursing homes. The New York Times. Retrieved March 13, 2022, from https://www.nytimes.com/2020/05/21/us/coronavirus-nursing-homes-racial-disparity.html
Shapiro, J. P. (1993). Up From the Nursing Home. In No pity: People with disabilities forging a new civil rights movement (pp. 237–257). Three Rivers Press.
Wong, A. (2020, July 20). Freedom for some is not freedom for all. Disability Visibility Project. Retrieved March 13, 2022, from https://disabilityvisibilityproject.com/2020/06/07/freedom-for-some-is-not-freedom-for-all/
