Why We Need to Get People Out of Congregate Care

There is a highly successful program called Money Follows the Person, which helps transition people from large institutions to home and community-based settings. The multiyear authorization expired and Congress is only trickling money into it to barely keep it going but the data show the value of getting people out of big facilities and back into small community-based facilities (which are still congregate and not enough) or their own homes.

Living in a congregate (grouped) setting is a rough life at the best of times, even with skilled, caring staff doing their best, because the realities of mass-produced care force restrictions on personal liberties, self-determination, community integratiom, and so on. And at worst, we get truly horrific outcomes, rife with abuse and neglect.

Lois Curtis, for instance, who went to the Supreme Court for us as the lead plaintiff in the Olmstead case 21 years ago, has talked about what winning her case and getting out has meant to her.

The memoir of disability rights leader Roland Johnson, who grew up in the infamous Pennhurst, is also powerful.

There’s a film about some Canadians’ efforts to free themselves from congregate settings, called Hope Is Not a Plan, that I strongly recommend.

I have done time long-term in the psych system and short-term in the nursing facility system, and I’ve worked in the DD system. I’ve got experience with poorly- and well-funded programs, with programs that had nakedly abusive staff and ones with great staff. Some parts of these systems are absolutely better than others, and none of it is good.

And it gets worse. In late 2018, 11 children died in an adenovirus outbreak at a nursing home in Wanaque, NJ because of the kind of lousy infection controls that we see over and over in these facilities.

And then came COVID-19 . And the carnage has been staggering.

It has been overwhelming in nursing facilities.

It has been overwhelming in psych facilities.

It has been overwhelming in the developmental disability system.

It has struck our elders, our disabled adults, and our children with disabilities.

Nor has it struck evenhandedly. The preexisting effects of structural racism means that people in nursing homes with primarily Black and Latinx residents are substantially more at risk than those in nursing homes with primarily white residents.

This isn’t just about disability-specific congregate settings, either. We’re seeing that prisons, jails, detention facilities, and college dorms can be impossible places to be safe in a pandemic, too.

So how do disabled people end up in congregate settings? If they need long-term services and supports (LTSS), there is something called “the institutional bias,” a set of structures that mean a lot more people end up in large facilities than would if it were truly up to them. In particular, state Medicaid programs have to pay for institutional care for recipients with a certain level of support, but don’t have to offer those same supports in the community. So some people get home and community-based services (HCBS) through a waiver. Most don’t.

And we have been fighting this one a long, long time, folks. Katie Beckett came home in 1981 at the age of 3 after President Reagan created a waiver for her; and because she had that waiver, she had a good life.

For short-termers, there is a hospital to rehab (often the same facilities LTSS residents are in) track. I have been hospitalized recently, and I was strongly pressured to enter one. After this story came out tying 44% of Illinois COVID-19 deaths to nursing facilities (I am in Illinois), I was confronted by administrators from Northwestern Memorial Hospital accusing me of being “hurtful” to suggest it wasn’t “perfectly safe” for me to enter one. A Rush Medical Center employee insisted the data isn’t in yet on whether the facilities pose risks. People don’t even have the information, much less the material resources, to protect themselves.

And I overheard patients — mostly older Black patients whose families were on the phone every single day talked into shoddy facilities with active infections. In one case the facility had recently been in the news for running out of disinfectant. I have no doubt the front-line staff were desperately trying to protect everyone. But the impact of the realities we are addressing overpowers those good intentions.

You know what happens to some of the folks who get placed in these facilities because “there’s no-one to stay with you at home”? What happened to Senator Elizabeth Warren’s brother. (Spoiler alert: he’s dead.)

How many lives could we save, how many lives could we improve, how many opportunities could we offer, how many communities could we strengthen, if we did what we know we can do — and can do not just for some of disabled people, but for every single one (nobody is “too disabled” to live successfully in the community so long as they have adequate supports)? A lot. I don’t have an exact number, but a damned lot.

We could raise kids like the ones at Wanaque, and like Roland Johnson, at home. We could give them lives so much closer to what Katie Beckett had. We could give the Lois Curtises the kind of life that let her become a successful artist. We could let elders age with people they know and trust love. We could protect people after health crises and let them die at home.

And we can do this. We can do this. We can establish a right to home and community-based services for everyone who has an entitlement to institutional care. We can build the accessible, affordable, integrated housing. We can train and pay personal care attendants and direct support professionals well, both people who do it professionally and people who do it for family members. We can abolish guardianship and agency control in favor of options like supported decision-making and microboards. We can fund the kind of community mental health services that people want and need. We can learn more about promoting self-determination, and put what we learn into practice. We can improve protections for people at risk of going in, and permanently reauthorize Money Follows the Person to help those who are already in and want to get out. For families who want to stay together, we can support that, and we can offer adequate help for those who want to strike out on their own. We can do it all, if only we solidify the national will to do it.

We can say “No more Wanaques” and not plunge ourselves into a situation thousands of times worse within a year and a half. We can say “Every child deserves to grow up in a family” and mean it this time. We can keep our elders, surrounded by support, in the communities that matter to them. We can change everything for disabled people who have signigicant support needs. We can finally learn the lessons of Willowbrook and Pennhurst — that these facilities have a life cycle and no matter what your intentions they are still congregate institutional settings with all that entails — and we can move on to something better.

We can’t undo the ravages of COVID-19 that we have already permitted to be visited on those in congregate care, but we can do better for the survivors and for those coming after them.

And we must. We must. Because these are our people.

p.s. If you want to contact your Senators and Representatives in Washington, D.C., and let them know how important this is to you, here is a good place to start. Scroll down.

2 thoughts on “Why We Need to Get People Out of Congregate Care

  1. Thank you for this thoughtful and important reminder of the need to end congregate segregation of people with disabilities directly ignoring the ADA mandate to provide disability services in the most integrated settings.


    • And thank *you* for your critically important work that has been instrumental in helping so many people have better and safer lives than they would otherwise have been provided.

      You are one of the greats in this struggle, and I am honored that you read something I wrote.


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