Shut Down the Death Traps

Here in Illinois, we have these things called state-operated developmental centers, or SODCs. I think that acronym is way off base and needs to be updated in the interest of honesty.

The “SO” part is accurate but the “DC” should be replaced by an “I” for institutions or “A” for asylums. I think that’s pretty much what they are. They’re modeled after a relic of an ugly past when disabled adults were warehoused en masse and indefinitely in large, isolated state facilities.

Today, the COVID-19 pandemic has made me feel exponentially more fortunate that I managed to avoid becoming trapped in a congregate setting and exponentially more anxious to see them all shut down.

Illinois has seven SODCs, each with between eighty and nearly 500 residents. There used to be eleven of them, but a campaign about a dozen years ago by disability activists resulted in some being closed. The activists urged the state to phase out all SODCs and instead serve residents in smaller community-integrated facilities, such as neighborhood group homes with no more than four residents.

I took part in that campaign initially for broader philosophical reasons. Congregate living doesn’t sound so bad, does it? It sounds communal and cooperative and interdependent and all that good stuff.

But living in congregate settings like state-operated institutions and privately owned nursing homes is quite the opposite. It means having little if any freedom to make basic everyday decisions, such as when you will get up and go to bed and who will assist you in doing so, what and when you will eat, who will be your roommate, and so on. You might not even be able to leave the premises, or move about much within them, without permission and/or an escort. The bigger and more isolated the congregate setting, the less control the people who live there have.

One of the SODCs the campaign closed down was the William A. Howe Developmental Center in Tinley Park, near Chicago. It became a focal point of our efforts to shut down these facilities. A total of twenty-nine Howe residents died over a three-and-a-half-year period, from 2006 to 2009.

For me, it was personal. Howe opened in the mid-1970s, right around the time I graduated from a state-operated boarding school for disabled kids. When it came time to move on because they graduated or aged out, some kids had nowhere to go because they didn’t have family support. So staff had to find a “placement” for them. Sometimes that was in a nursing home.

With a slight twist of fate, I could have been “placed” in this brand new place called Howe. It was located near my mother’s home, so it would have been convenient for her to visit me and take me out on a pass now and then. And who knows, maybe I’d still be there or in some other SODC. A report on the closure of Howe said 58 percent of its residents had lived there twenty or more years.

Back then, the options for someone in my situation—I use a motorized wheelchair—were pretty much to live with family or live in an institution. But I was fortunate enough to have a strong mom who expected me to go to college and the support of public programs that paid for it. So instead, I went to Southern Illinois University and majored in journalism and here I am today, for whatever it’s worth.

I have a crew of people who assist me in my home to do things like getting dressed and getting out of bed. I hire and fire them, and I decide their hours and tasks. A Medicaid-funded state program pays the wages of my workers. Because of this support, I live in a condo near downtown Chicago with my wife. I don’t think I would have either a wife or a condo if I’d ended up in Howe or some other SODC.

Today, the COVID-19 pandemic has made me feel exponentially more fortunate that I managed to avoid becoming trapped in a congregate setting and exponentially more anxious to see them all shut down.

Think of it: If I were living in a place like Howe, I’d be a sitting duck for the coronavirus. The numbers bear this out.

At the Elisabeth Ludeman Center in Park Forest, Illinois, 202 of the 343 residents and 116 staff had tested positive for the virus as of May 18, according to the Illinois Department of Human Services. At least eight residents and five staff members had died. At Shapiro, the largest SODC with 476 residents, seventy-one residents and sixty staff had tested positive. Only one Illinois SODC had reported no COVID-19 cases among residents or staff.

In mid-April, the state of Illinois deployed National Guard Airmen to the Ludeman facility, to help relieve the pressure on staff.  

Similar problems are occurring at nursing homes across the country, which have become breeding grounds for the coronavirus. The New York Times reported that so many people died in one of the largest nursing homes in New Jersey that corpses were being stored in a shed outside. Among those living in that facility, seventy-six residents and forty-one staff members, including an administrator, were diagnosed with COVID-19.

Here in Illinois, the Chicago Sun-Times reported on May 1 that 44 percent of the state’s COVID-19 deaths had occurred in its nursing homes. More than 350 such facilities had at least one confirmed case of infection.

Sadly, none of this surprises me. This increased vulnerability necessarily occurs when you live in a large congregate setting where you can’t control your living environment. When so many people come in and out of your life and you have no say over who they are, it’s much easier for a virus to invade your space. And then there’s no escape. This is your home.

It is where you must live. And where you might die.

In my present living arrangement, thankfully, I can control who comes in and out of my home, like most adult human beings. Of course, that’s no guarantee that I won’t get sick, but it does increase my odds.

But I can’t help but think: If our campaign had succeeded, we would not have this problem today. All, or certainly most, of the Illinois SODCs would probably have been phased out by now.

Over the last decade or so, governors from both parties have shown no appetite for closing these centers, even in the age of COVID-19. Legislators of both parties from districts containing SODCs staunchly defend them because of the jobs they create. The American Federation of State, County, and Municipal Employees, the union that represents SODC workers, has fiercely resisted any change for the same reason. “The closure push appears based on politics and budget considerations, not what’s best for individuals, families, and communities,” the union has said.

Even the families of some SODC residents are fighting to preserve the status quo. The website of the Parents and Friends of the Ludeman Center says the people who live in SODCs are “multi-diagnosed medically fragile individuals that must have and receive 24/7 on-site support from a specialized staff that ensures their quality of life and services are maintained.” It says moving these individuals to a new environment without the support of trained and specialized staff would be “a roadmap to disaster.”

But it’s not like transitions to community settings have never been done before. At least thirteen states and the District of Columbia no longer have state institutions. Many made that transition more than twenty years ago.

The argument that institutions are safer and more secure environments has long been used to justify their continued existence. But the pandemic has exposed the harsh reality behind this false claim. Even the most “multi-diagnosed medically fragile” disabled adults are safer and more secure when they have maximum control over their living situations. Large congregate settings are the antithesis of that.

The Illinois Department of Human Services, in response to my inquiry, emailed a statement saying it is “committed and duty-bound . . . to transition those who wish to live in the community from congregate settings.” And while its present focus is on “caring for our residents and keeping them safe and healthy during this crisis,” it said further discussions will occur “at an appropriate time when we are through the pandemic.” In other words: not now.

After the September 11 attacks, I remember feeling a strange surge of hope. Maybe this tragedy will give birth to a new empathy for others and lead to more peace and cooperation.

The pandemic sometimes has that same effect on me. I hope people see how brutal it has been on the most powerless disabled folks. Then maybe a lot more money and other resources will be put into support systems that give disabled folks maximum control of their lives. That will mean an end to institutions, both public and private, not just in Illinois but everywhere.

But my surge of hope on September 11 quickly faded when I remembered who the President was. There was never really much chance that George W. Bush would’ve led the charge for a more progressive approach.

Now the same thing is happening. I have hope. Then I remember who the President is, and it quickly fades.