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Key points
- The word "institution" once suggested large, abusive asylums; now, it has been recast as any residence housing more than four unrelated people.
- This change has tremendous impact, as the proposed Better Care Better Jobs Act would prioritize "community-based" over "institutional" settings.
- At risk are the intensive, specialized settings that many with severe intellectual and developmental disabilities require.
You know what an institution is, don’t you?
A short animated video from The Arc, a national advocacy organization for the intellectually and developmentally disabled, features an image we all recognize: a big, brown building (helpfully labeled “Institution”), a tall black fence, sad inmates. In large part due to examples like Willowbrook State School and Pennhurst State School and Hospital, which were publicly revealed to be abusive and overcrowded, this is what we all think of when we think of institutions for the cognitively impaired.
But as Congress prepares to debate the Better Care Better Jobs Act, which would direct hundreds of millions of dollars into Medicaid Home and Community Based Services (HCBS) at the expense of “institutional” settings, it’s critical to ask: What exactly counts as an institution, today? It may not be what you think.
Are Institutions Big?
Probably the first thing most people think is that institutions are really large. Pennhurst at its height housed almost three thousand residents, Willowbrook had twice that number. So when disability rights advocates sought to set a size limit on residential settings for the intellectually and developmentally disabled, they chose a much lower number: four. Yes, certain advocates defined more than four unrelated people living together as an institution.
That was about ten years ago; now that number has apparently dropped even lower. In a recent op-ed in Bloomberg, Ari Ne’eman, founder of the Autistic Self Advocacy Network, argued that group homes are too institutional as well. This leaves only the family home, adult foster care (euphemistically dubbed “lifesharing” in some states), and individual apartments or homes as the only acceptable residential settings, in the view of some.
Although policymakers have been hesitant to push back against this, in my view, implausibly bold redefinition, or defend the obviously expansive middle ground between 6,000 and 4, that may be changing. In a widely circulated June 2021 letter to Pennsylvania State Representative Brian Fitzpatrick, Anne Marie Costello, Acting Deputy Administrator and Director of the Centers for Medicare and Medicaid Services (CMS) clarified that “CMS does not believe that there is a threshold number of individuals receiving services beneath which it can be presumed that a setting would meet the HCBS settings criteria, or above which it can be presumed that a setting would not meet the criteria.”
This position implicitly acknowledges the arguably ideological basis of the size limits demanded by Disability Rights advocates, which are not supported by any data. The few studies that have examined different residential settings are so flawed (most notably, failing to control for severity of disability), that David Mandell, ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, wrote in 2017, “Right now, our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”
Are Institutions "Isolating" and "Segregating"?
So, if we can’t recognize an institution by its size, are there more useful criteria? Many disability rights advocates repeatedly describe institutions as “isolating” and “segregating”—evoking inmates like the ones in the Arc video languishing behind the fence. But many of the prime targets for these advocates actually prioritize facilitating inclusion in the greater community.
Residents at First Place—an apartment building located right in the middle of Phoenix—take classes at the local university, as well as work and play in the city that is literally right outside its door. And in July, Democratic analyst David Axelrod described his intellectually disabled daughter Lauren’s fulfilling life at Misericordia, a disability-specific campus in Chicago, for The New York Times, noting that “she and her friends walk to nearby shops and restaurants… [as well as] vocational activities and jobs on campus and off.”
On the flip side, nothing guarantees that intellectually and developmentally disabled individuals won’t be isolated or segregated in even the smallest settings. As the mother of a 22-year-old son with severe autism, I can’t imagine anything more isolating than Jonah alone in his own apartment with one unsupervised direct support professional (DSP), who might just as soon spend his shift texting his girlfriend while Jonah stims on his iPad rather than make the much more demanding effort to facilitate his favorite activities, like swimming, hiking, and eating at Wendy’s.
Where the Focus Should Be
Instead of getting caught up in the above debates, in my view, the focus should be on providing the services people need.
Here is the real tragedy at the core of this debate: Nothing is more isolating, segregating, or restricting than severe intellectual and developmental disability. I know autistic individuals who have blinded themselves through repeated blows to the head; concussed their caregivers; and kicked the windows out of cars. Many never leave their homes, simply because their parents can’t safely manage their behaviors in public spaces. The “institution” straw man may be interfering with securing the intensive, specialized supports many profoundly cognitively impaired people require to enjoy meaningful, engaged, and included lives.
