This article appears in the Summer 2015 issue of The American Prospect magazine. Subscribe here.
A move is afoot to undo one of the great social policy successes of the past half-century—the commitment to serve people with intellectual and developmental disabilities in their homes and communities, rather than in institutions. Although those who propose to “bring back the asylum” point to real gaps in our current community services, their proposed solutions are misdirected. Instead of returning to the flawed models of the past, we need to strengthen community-based services that promote independence and integration, even for those with very significant disabilities.
Fifty years ago, parents of children with intellectual or developmental disabilities were often advised to institutionalize those children for life. In the absence of community supports and basic services, institutionalization often seemed to be the only alternative.
In theory, institutions provided care and protection. In practice, many were unsafe, unsanitary, and marked by abuse and neglect. The Willowbrook State School on Staten Island in New York City became infamous in a 1972 Geraldo Rivera broadcast that showed ill-clothed and underfed residents, crowded in shadowy rooms with nothing to do all day. Lawsuits and journalistic exposés uncovered similar institutional abuses across the country. And even institutions that were not so marked by neglect denied their residents basic day-to-day freedoms that many of us take for granted, such as the opportunity to choose what, when, and with whom to eat a meal, or even when to turn out the light at night.
Thanks to profound changes in policy and standards of care, the vast majority of Americans living with intellectual or developmental disabilities now live in their own homes, with family members, or in small-scale group homes. Particularly among young people, the effects have been dramatic. In 1977, an estimated 54,000 children and youth diagnosed with intellectual or developmental disabilities lived in large institutions. Families and policy-makers were understandably concerned that many of these young people, who often had serious accompanying physical or psychiatric disabilities, required services that could only be provided at large public institutions. Yet, by 2008, in large part because of inclusive educational services, better medical care, and improved family supports, the number of institutionalized young people declined by roughly 97 percent, to 1,869.
Those changes resulted from hard work by concerned parents and professionals, policy-makers and public interest lawyers—and not least by people with disabilities themselves, who organized self-advocacy groups that pushed for opportunities to live full lives in the community. We should be proud of their achievements. They have helped hundreds of thousands of Americans live safer, happier, more independent lives.
Consider two examples, drawn from our own personal and professional lives. Harold’s brother-in-law Vincent lives with significant intellectual disability as a result of fragile X syndrome. Fifty years ago, his parents bravely resisted medical advice to have Vincent placed into institutional care. He now lives in a small group home, participates in a broad range of community activities, and leads a life that was all but inconceivable when he was born.
In 2011, while Samuel was serving as principal deputy assistant attorney general for civil rights, the United States Department of Justice issued a report on Virginia’s still heavily populated institutions for people with intellectual and developmental disabilities. The Justice Department found, among other things, that those institutions exposed residents to “repeated accidents and injuries” and that staff physically restrained residents “as an intervention of first, rather than last, resort.”
In January 2012, Virginia entered into a comprehensive settlement with the Justice Department, which will ensure that Virginians with intellectual and developmental disabilities receive services in their homes and communities. Many people who left Virginia’s institutions have benefited enormously. Doug, a 41-year-old man with Down syndrome who moved into a community setting during the federal investigation, exemplifies the best possibilities. As a report produced by the Justice Department details, Doug has significant cognitive disabilities and relies on supports to help him with basic needs. His parents feared that his disability would make it impossible for him to live in the community. Yet after 20 years of living in an institution, Doug blossomed. He began to walk after many years of using a wheelchair and began to eat solid foods. He now visits stores, restaurants, and the local bowling alley with his friends. Doug’s story exemplifies—in unusually dramatic form—how thousands of people have benefited from these and similar policies.
Those who work in human services know a lot about how to support people with mental disabilities in their own homes and communities. Unfortunately, our politics and governance have often failed to support the required services, sometimes with tragic results. Katherine Flannery Dering’s recent harrowing family memoir, Shot in the Head: A Sister’s Memoir, a Brother’s Struggle, recounts the repeated failure of community-based mental health services to serve her late brother, Paul Flannery, who lived with schizophrenia.
And now, a troubling development is brewing. Some respected ethicists and commentators suggest that our country went too far in the great waves of deinstitutionalization.
Writing in the Journal of the American Medical Association, bioethicists Dominic Sisti, Andrea Segal, and Ezekiel Emanuel issued a frank call to “bring back the asylum” in long-term psychiatric care. Psychiatrist Christine Montross took to The New York Times to espouse the creation of a “modern asylum” for individuals living with autism and other intellectual or developmental disabilities.
We sympathize with these concerns. Both articles note that many individuals with disabilities did not really experience deinstitutionalization. Rather, they left the state asylums only to find themselves in other institutions: nursing homes, board-and-care or “adult homes,” even jails and prisons. In these facilities, people with disabilities remain set apart from the community, and they do not receive the services and supports they need to live full, independent lives. “Trans-institutionalization” is not what deinstitutionalization was intended to be.
Community services also face new challenges, some of which arise from our very success in improving the well-being and longevity of individuals with disabilities. More than 800,000 individuals with intellectual or developmental disabilities now live with caregivers older than age 60. Their situation poses a huge set of challenges. In 2012, an estimated 110,000 individuals with intellectual or developmental disabilities were on formal state waiting lists for residential services. Many other difficulties are readily documented in our current systems.
These complaints are genuine and serious. But they do not argue for a return to institutional care. Rather, they underscore the need to provide the necessary resources and monitoring to develop and improve home- and community-based services. As Montross notes: “Group homes have undergone devastating budget cuts. … With fewer staff members to provide care, outbursts escalate.”
Community-based services require proper funding to hire, train, and support sufficient numbers of direct-care workers. From the beginning, state and local governments have resisted providing sufficient resources to these areas. In 1974, Sharland Trotter and Robert Kuttner warned of this problem in a Washington Post article, “The Mentally Ill: From Back Wards to Back Alleys,” which summarized the darker possibilities that all too often came to pass. Although advocates fought in the ensuing decades to ensure sufficient funding, the Great Recession has brought painful cuts.
These settings particularly require decent pay to reduce turnover and to maintain employee morale. In 2014, average wages were less than $12 an hour for direct-care workers serving the intellectually and developmentally impaired in residential or community settings. The Supreme Court’s recent decision in Harris v. Quinn worsened that pay problem, by hindering direct-care workers’ efforts to collectively bargain for better wages and working conditions.
In litigation and lobbying during the past decade, advocates of deinstitutionalization have focused on expanding and defending precisely these important investments in community services. Of course, we shouldn’t kid ourselves. Some people are difficult to serve well in a community setting. It’s hardly surprising that those dissatisfied with community care turn back to the idea of a public institution where, one can hope, loved ones will at least be safe and taken care of.
But let’s also not kid ourselves in imagining that “the modern asylum” would be immune to the clinical, political, financial, and administrative challenges that bedevil our current community-based efforts. Many of the worst problems would surely persist. Only this time, these problems would arise in the back wards, blighting lives out of public view.
Advocates of returning to the asylum claim that things will be different this time. Maybe, but the institutional pressures that affect all human-services delivery cannot be avoided simply by placing people with disabilities behind institutional walls.
Recent or ongoing Department of Justice investigations in Virginia, Florida, and Georgia underscore that this is no hypothetical concern. The Center for Investigative Reporting just released an 841-page report recounting abuses at California’s Porterville Developmental Center and related facilities. The headline of The Daily Beast’s accompanying coverage, “Beatings, Murder, Rape in California Asylums” conveys what you will find in these pages.
Despite inadequate resources and other limitations, the deinstitutionalization of people with intellectual and developmental disabilities has been a quiet triumph. Our challenge is to make that system work, not to walk it back.