The year was 1909, and Charles Wilbur was near the end of his life. As he looked back on a career promoting and operating institutions for people then called “feeble-minded,” he suffered profound regret.
“My views are decidedly changed since I learn that Society only desires to get rid of them and be protected from them when the older ideas were to uplift them by every means that could be used,” Wilbur wrote to a colleague, bemoaning the shift toward lifelong institutional segregation for people with intellectual disabilities. “Now when thus congregated in Droves like cattle it is about as much as we can accomplish to keep them comfortable and fed and clothed after a fashion, but without the affectionate influences most children get at homes. Shut up by themselves the large Asylum is no better than the County poor house and in my judgment not as good.”
I thought of Wilbur last month when congressional Democrats introduced the Better Care Better Jobs Act, which, if passed, will carry out President Joe Biden’s promise to invest hundreds of billions in home and community-based services for people with disabilities. This legislation stands to be game-changing, not just for what it promises but for how it can redress mistakes of the past.
Wilbur died knowing that his field was rapidly becoming entwined with the eugenics movement, which segregated hundreds of thousands of people into institutions in pursuit of genetic perfection. In the 20th century, institutionalization of people with intellectual disabilities steadily increased, peaking in 1968 as the influence of eugenics waned and the modern disability-rights movement began. Much work has been done since to help people move into the community. Yet the services they receive today too often depend on which state they live in rather than their real needs.
While 17 states have stopped using large state institutions, others lag behind. A third of people with developmental disabilities in Mississippi reside in large facilities, as do 25% in Arkansas and 14% in Illinois, while less than 1% in Vermont, Maryland and Oregon do. Most services in these latter states are provided in more individualized settings.
Such disparities cannot be explained by severity of impairment. People with developmental disabilities are not more disabled in Illinois, Arkansas or Mississippi than they are in Oregon, Vermont or Maryland. The differences result from policy choices. Some states help people with disabilities live life on their own terms, and others offer intensive services only in congregate facilities.
Why does this matter? Can’t high-quality services be delivered in large settings as well as small ones? Perhaps. But there is reason to be skeptical. The institutional abuses of the past stemmed not only from eugenic malice. Many early institutional administrators acted with the best of intentions. But there are inherent weaknesses in congregate care that lead to decay over time.
Institutions do not just segregate people with disabilities from society — they also congregate people to create economies of scale. But to safely supervise many people who require ongoing assistance in one location, providers must limit the range of personal choices available. Restrictions are imposed, not out of malice, but for practical reasons. Yet they still regiment people’s lives. The right to decide when to eat breakfast or how to spend one’s day are precious liberties — as people who have been denied them in institutions can attest. Much research has found that people with disabilities have less choice and autonomy in larger settings than in smaller ones.
Such restrictions are a problem not only in traditional institutions, but also in group homes. These larger care settings are also usually owned and operated by the same agency. This means that people with disabilities and their families cannot fire unsatisfactory or abusive agencies without needing to find new housing. The quality problems that result have caused some families to be skeptical of community care. But group homes are not the only option. There is a growing trend toward separating disability services and real estate. Provider agencies should shift away from acting as landlords in disability-specific housing. Instead, they should bring services to people with disabilities residing in the same homes and apartment buildings used by the general population.
Most people with disabilities and their family members want to avoid institutionalization, even if it means going without support altogether. Under Medicaid rules, states must pay for institutional care, but they may maintain a waiting list for community services. Across the country, hundreds of thousands of people with disabilities wait for support in the community. Meanwhile, family members — usually women — leave the workforce to provide uncompensated care. Thus, the proposed legislation could support gender equality by ensuring women don’t have to leave their jobs to care for relatives with disabilities.
The Better Care Better Jobs Act would encourage states to increase the availability of home care by expanding the federal government’s share of the cost. To receive these dollars, states would need to improve their programs, including by raising worker wages and making it easier for people with disabilities to qualify for support while working.
States can and should shift their services for people with disabilities away from institutions and other congregate facilities and toward more individualized services. And Congress is right to help, with greater investments in community-based support.
Ari Ne’eman is a doctoral candidate in health policy at Harvard and a visiting scholar at the Lurie Institute for Disability Policy at Brandeis. This column does not necessarily reflect the opinion of the editorial board or Bloomberg LP and its owners.