The year is 1909 and Charles Wilbur is near the end of his life. As he looked back on a career that promoted and directed institutions for people who were then described as “moronic”, he regretted deeply.
“My views have changed dramatically since I learned that society would only want to get rid of them and be protected from them if the older ideas would elevate them by all possible means,” Wilbur wrote to a colleague, lamenting the shift lifelong institutional segregation for people with intellectual disabilities. “Now when we gather like cattle in Droves, it is about as much as we can accomplish to make them comfortable and to feed and clothe them, but without the loving influences that most children have at home to get. Shut up, the big asylum is no better than the county’s poorhouse and, in my opinion, not that good either. “
I thought of Wilbur last month when the Democrats in Congress introduced the Better Care Better Jobs Act, which, when passed, will deliver on President Joe Biden’s promise to invest hundreds of billions in home and community-based services for people with disabilities . This legislation will be groundbreaking not only in what it promises, but also in how it can make up for past mistakes.
Wilbur died knowing that his area of expertise quickly became intertwined with the eugenics movement, which outsourced hundreds of thousands of people into institutions for genetic perfection. In the 20th century, the institutionalization of people with intellectual disabilities increased steadily and peaked in 1968 when the influence of eugenics subsided and the modern disability rights movement began. Much work has been done since then to help people enter the community. But the services they receive today all too often depend on which state they live in rather than their real needs.
While 17 states have stopped using large state institutions, others are lagging behind. A third of people with developmental disabilities in Mississippi live in large institutions, as do 25% in Arkansas and 14% in Illinois, while less than 1% in Vermont, Maryland, and Oregon do. Most of the services in these latter states are provided in more individualized settings.
Such differences cannot be explained by the severity of the impairment. People with developmental disabilities are no more disabled in Illinois, Arkansas, or Mississippi than they are in Oregon, Vermont, or Maryland. The differences result from political decisions. Some states help people with disabilities live a life on their own terms; others only offer intensive services in community facilities.
Why is that important? Can’t high quality services be provided in both large and small environments? Possibly. But there is reason to be skeptical. The institutional abuses of the past were not only due to eugenic malice. Many of the early institutional administrators acted with the best of intentions. But there are inherent weaknesses in community maintenance that, over time, lead to deterioration.
Institutions not only separate people with disabilities from society – they also bring people together to achieve economies of scale. However, in order to safely supervise many people who need constant help in one place, providers need to limit personal choices. Restrictions are not imposed out of malice but for practical reasons. Yet they regulate people’s lives. The right to decide when to have breakfast or how to spend the day are precious freedoms – as people who have been denied in institutions can testify. Much research has shown that people with disabilities have less choice and autonomy in larger institutions than in smaller ones.
Such restrictions are a problem not only in traditional settings, but also in residential groups. These larger care facilities 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 having to find a new apartment. The resulting quality problems have led some families to be skeptical about municipal care. But group houses aren’t the only option. There is a growing trend towards separating disability services and real estate. Providing agencies should say goodbye to the role of landlords in handicapped accessible apartments. Instead, they should provide services to people with disabilities who live in the same houses and apartment buildings that are used by the general population.
Most people with disabilities and their family members want to avoid institutionalization, even if it means foregoing support altogether. Under Medicaid rules, states must pay for institutional care, but they can maintain a waiting list for community services. Across the country, hundreds of thousands of people with disabilities are waiting for community support. In the meantime, family members – usually women – leave the workforce to provide free care. Thus, the proposed legislation could support gender equality by ensuring that women do not have to leave their jobs to take care of relatives with disabilities.
The Better Care Better Jobs Act would encourage states to increase the availability of home care by increasing the federal government’s share of the cost. To receive these dollars, states would need to improve their programs, including by raising workers’ wages and making it easier for people with disabilities to qualify for support while at work.
States can and should move their services to people with disabilities away from institutions and other assemblies to more individualized services. And Congress is right to help with bigger investments in community-based support.