Journalist John Hirschauer joins Brian Anderson to discuss the closure of Pennsylvania state-run institutions for the developmentally and intellectually disabled, the historical roots of deinstitutionalization, and New York City’s changing approach to the seriously mentally ill.
Audio Transcript
Brian Anderson: Welcome back to 10 Blocks. This is Brian Anderson, the editor of City Journal. Joining me on the show today is John Hirschauer. He's an associate editor of The American Conservative, a 2022-23 Novak Fellow at the Fund for American Studies. He was formerly the William F. Buckley Fellow at National Review, and he's the author of a long and quite brilliant piece recently for City Journal entitled “The Last Institutions.”
It's a story about the push by activists and the state government to close two facilities for the intellectually and developmentally disabled in Pennsylvania over the objections of the people actually living there and their families. It's, again, a really terrific and moving story. John, thanks very much for joining us.
John Hirschauer: Thanks so much for having me.
Brian Anderson: Your essay, which is heavily researched and reported, looks at the Polk and White Haven Centers in Pennsylvania, which the commonwealth is in the process of closing. I wonder, just to set the background for folks who haven't read the story yet, what's been going on at the centers? Who's living there? What's the state's case against them, and where do things stand currently?
John Hirschauer: Sure. I think to understand what's happening at Polk and White Haven now, you have to understand a little bit about the history of facilities like Polk and White Haven. People often get them confused with state hospitals for the mentally ill, but they're similar from the outside in appearance at least. They're both situated on huge physical plants. Polk was built in 1896. White Haven used to be a tuberculosis sanatorium, but was converted to a developmental disabilities facility in the 1950s. At one point in its history, Pennsylvania operated 23 of what were called state schools for people with intellectual and developmental disabilities.
The prevailing idea in the late 19th and early 20th centuries was that you were going to place people at these state schools when they were children or young adults. You were going to train them and give them some sort of vocational training and return them back to the community as adults, hopefully with the vocational skills required to support themselves in the community. This sounds maybe paternalistic to modern ears, but at the time it was really revolutionary, the thought that somebody with an intellectual and developmental disability, Down syndrome, what we later identified as autism, conditions like that could be treated.
Treated is maybe the wrong word, but people with those sorts of conditions could be taught skills and then reintegrated into their communities. As I go through in the piece, even in the 1920s and '30s at Polk, where there were the seeds of what would become some real abuse that developed at the facility in the 1950s and '60s, you could see the seeds of it in the early 20th century, but significant numbers of the patients admitted to Polk in the early 20th century were returned to their homes and communities often as farm hands and farm laborers with the skills that they learned at Polk Center. As time went on, these 23 institutions became bywords for abuse and neglect.
Parents dropped off their children at these places having heard about the potential that their disabled child might be able to grow and adapt and learn new skills at these facilities. What happened in time is that they took on increasingly less of an educational character and more of a custodial character. You had patients who were pretty significantly disabled who were being admitted, and it took so many institutional resources to provide for these people and to meet their daily basic care needs that these institutions shifted their focus away from education and towards custodial care.
This began a lot of the worst abuses that many people are probably familiar with hearing about these facilities. Geraldo Rivera's did an exposé on Willowbrook State School in New York in 1968 or 1973, I think, and then there was a famous one in Pennsylvania at the Pennhurst State School called “Suffer the Little Children.” You just saw rows upon rows of disabled children huddled in day wards. Some of them were in cribs through the age of 10, 11, 12. They hadn't walked, so their development had been permanently stunted.
I mean, there was terrible and terrific abuse in these facilities that whenever you talk about them today, it's worth at least situating that context in the background because it provides a lot of the emotional charge for the conversations about these facilities. But what happened in the decades after those exposés—and a lot of public pressure was brought to bear on these facilities, the worst ones were shut down, by and large. Willowbrook State School was shut down by I think the later '80s, if not early '90s. There was an almost immediate push to downsize that facility after the abuses were brought to light.
Similar developments happened at Pennhurst and some of the other notorious institutions. By 1971, Richard Nixon had signed an amendment to the Social Security Act creating what at the time was called the Intermediate Care Facility Program for people with mental retardation. Basically, what it did was, any state that operated a state school and wanted to receive federal funding for the operation of that school—and again, by the 1970s, “school” is really a euphemism. These are not really schools anymore. These are residential custodial institutions. A lot of them begin to shed that “school” language and they become "developmental centers."
Some of them still retain the name “training school” just by inertia, but that no longer really reflects what these facilities do. To operate their state schools and to receive federal funding, they had to agree to 260 pages worth of federal regulations talking about staffing ratios. At Pennhurst in the '60s, you had two staff members caring for 80 disabled individuals and children. That's obviously a totally unacceptable ratio. Today, at most of these facilities that remain, you're talking about a three-to-one or four-to-one staff-to-patient ratio. You have three or four staff members for every one patient.
That's not just direct-care workers. You also have administrators and custodians and so forth. But the staffing ratios have totally been inverted. The types of people who served in these centers changed over time. In 1975, the Individuals with Disabilities Education Act was signed, meaning that all children, regardless of the severity of their disability were guaranteed public education, which means that, except in the most rare circumstances, parents are not institutionalizing their developmentally disabled children anymore.
Brian Anderson: But they're just being sent to regular schools now, right?
John Hirschauer: Yeah, public schools.
Brian Anderson: Specialized programs.
John Hirschauer: You have fewer children. I mean, it's a minuscule percentage. I mean, some states still have a handful of children in these types of institutions, but it's exceedingly rare. What these facilities ended up doing was becoming havens of last resort for the most difficult patients in the state who could not be served in a smaller community-based setting. Just to add a little bit of context in terms of the deinstitutionalization process on the developmental disability side, I think when people hear the word deinstitutionalization, they think so often of people with mental illness who are living on sidewalks and street corners.
This is a little bit of a different case and that a lot of the people who were discharged from these large facilities ended up succeeding, broadly speaking, in a less structured, less regimented environment like a group home or like an independent apartment. The number of people who could stand to benefit maybe from institutional care decreased or is substantially lower, I think, on the developmental disability side than it is on the mental illness side. But basically these facilities that exist have been gradually downsized, and most of them have been closed. Now in Pennsylvania, there are only four left.
They serve basically three populations, broadly speaking. Number one, long-stay patients who have lived at the facility for 40, 50, 60 years and don't want to leave. People with severe behavioral conditions such as autism. Not just regular autism, but severe autism. One of the individuals I profile in the piece, Joey Jennings, headbutted his mother, would throw televisions through walls. Another individual I profiled broke his school teacher's ribs and bit his own arm so hard that he needed intravenous antibiotics. I mean, really severe behavioral cases. And then people with severe and serious persistent medical needs, so people who are bedbound 24 hours a day who need intensive medical supports.
The institutional model, and this is kind of where I'll leave it just in terms of the context, the institutional model provides these people with services that really can't be provided anywhere else. You can't staff a 24-hour nursing unit in a group home. You can't have a psychiatrist around 24 hours a day in a group home. You can't have a doctor on grounds 24 hours a day in a group home. But the economy of scale available at an institution, so called, and I think that that language is kind of pejorative and is intentionally used by advocates to suggest that these places aren't communities unto themselves, but I'll use it just for simplicity's sake.
These institutions are capable of bringing all these services to one central location because of the economy of scale. It's not to say that people with severe and serious disabilities aren't served in the community often quite well, but one size doesn't fit all. And that's what I try to get at in this piece.
Brian Anderson: Well, to speak to the push to shut these places down, and one of the striking points you make in the piece is that deinstitutionalization, which is a familiar concept to City Journal readers, is actually still going on because it's kind of the same push right now, right? In your piece, you discuss and interview several members of this network of activists, government officials, academics who really are opposed to these kind of institutions. They followed this playbook that you also described. They pushed to limit the funding for the facilities, then they cite a lack of funding as the reason they have to be closed down.
The reader comes away wondering, well, what's going to happen to these people, because they're often in situations where their families aren't going to be able to take care of them properly, or as you note, some of them have severe personality disorders? What's going to happen to these people, and why the push to shut these institutions down? What's the real driver behind it?
John Hirschauer: I think it's ideological, and people like to frame it because it's a frame they understand easier. They like to say, "Oh, it's all about money." But when you speak to these advocates, you realize very quickly, and I quote one woman in this piece, I told her, if you were made queen of the universe tomorrow, was I think the way I put to her on the call, would you shut down every remaining state institution in the United States? And she said, "Yes, I would."
Even in their literature, talking about how they want to go about closing these institutions, they caution the advocates not to bring up the cost of institutionalization because they say ultimately this is a civil-rights issue, and that cost really doesn't have anything to do with it in terms of what's driving them.
I think the most charitable way to explain their ideology, and I try to put myself in their headspace so to speak, because they really are emotionally charged about this issue, if I were somebody let's say in the 1960s who was abused in an institutional setting, let's say I were mildly disabled and I really should have never been institutionalized, and I saw all of the horrors that went on at some of these facilities in the '50s and '60s, I might understand the mindset of somebody who says, "I got out of that facility, but I'm not going to sleep until every last one of those places is closed."
Now, I wouldn't agree with it because I think you can't assume that everybody's experience of institutionalization, so-called, is the same, or that all institutions always and everywhere are the same. And that people who say, as I cite in the piece, there are 271 of the 301 patients at these facilities who have been surveyed and were capable of responding to a proctor and were asked whether they wanted to stay at the facilities, they said, "Yes, I do." To me that's just positive.
But I can understand an activist who maybe lived at one of these facilities and saw some abuses and said, "You know what? This is the civil rights issue of our time from my perspective as a disabled person to make sure every last one of these institutions is closed down and has a plaque on it." You can kind of see that triumphant reaction when these facilities close. These disability rights groups will host closure ceremonies and they'll ceremonially lock the front door. I know at a facility in Connecticut, this is a story that's always been striking to me, and this was what got me interested in the subject is I had a facility like this in my hometown.
I spoke to someone who used to work with one of the advocacy organizations in Connecticut, and she went into their break room one day and she saw on two opposite ends of the break room were two bulletin boards. On one end were a whole bunch of pictures from the closure ceremony of one of the two institutions in the state, Mansfield Training School. If I recall correctly, I think she said there was a brick there taken from the administration building, sort of taken as a trophy. And then on the other end of the break room was an empty bulletin board. The woman asked one of the employees there, "Well, what is that bulletin board for?"
And if I'm recalling the conversation correctly, she said, "That's for the day we close Southbury Training School," which was the other institution in the state. It takes on a very ceremonial and symbolic function to these advocacy organizations to say, "We're removing the chains of oppression that are oppressing people with disabilities." You'll often hear them talked about this way, that they are symbols of a past era when people with disabilities were shunted away, and they become these ideological totems.
It becomes totally abstracted from the actual people who are working and living and eating and going to movies and doing all the things that they do at these facilities, and seem to actually enjoy their lives there, and their families who have oftentimes waded through a lot of bureaucratic hurdles to get their son or daughter admitted to one of these facilities after having been in the community for 10, 20, 30 years and finding that nothing works. It is a really interesting, and I think undercover ideological fight between two sides who feel they're on the side of the angels and see any compromise with these existence of these institutions as something that they simply can't abide.
Brian Anderson: What are the families going to do in this if the campaign is successful and these last institutions are closed? Obviously, not everybody can afford private care. Community-based options aren't always desirable. What are the residents going to do? What are the families saying? Maybe describe a little bit more some of the people you talked with who were really involved with these institutions on the deepest level.
John Hirschauer: Sure. I think different types of patients will have different types of experiences when they're discharged. The first thing to note for context's sake is that Pennsylvania is still going to keep two of its four state institutions open for the time being. Now, when I asked, and this is something I say in the piece, when I asked at the time the head of the department of human services in Pennsylvania—she's since left the department—whether these two remaining institutions would one day be closed, she told me, "That's certainly a possibility. That's certainly a possible future."
They're not at all closing the door on the possibility that these institutions, that Polk and White Haven will themselves be closed one day in the future. But those for now remain options. A lot of the people living at these two centers are just transferring to one of those other two state institutions in Ebensburg and Selinsgrove, Pennsylvania. Some will move to private institutions, but the same forces that are trying to close admissions to public institutions are putting similar pressure on private institutions around the state. There's a similar dearth of what are called intermediate care facility—ICF—beds on the private side in Pennsylvania.
Some of them will go to group homes and community-based settings. Frankly, some of them might do quite well and might be quite happy that they left. That's happened to plenty of individuals around the country who at one time didn't want to leave an institution, were forcibly discharged by disability rights advocates and found out they like living in a less restrictive setting. Maybe that will happen for some people. I actually anticipate that it will. I'm sure that it will.
But when you look around the country at what happens when these places are forcibly closed down, because that's what this is, this isn't by attrition, people naturally moving out and making other selections, this is a closure that was done prematurely and is being imposed on people. You see that, number one, death is often associated with it. I mean, some people call it transfer trauma. There are all sorts of terms for dislocation syndrome or whatever. There are a million different ways to describe it. But I think it was 2013, the state of Georgia—and I might have my year wrong, but I cited it in the piece and you can find it there. The Augusta Chronicle has a great article about it.
In 2013, the Department of Justice under Barack Obama had required the State of Georgia to move out about 500 people who had been diagnosed with severe or profound mental retardation, so-called, or developmental disabilities, whichever term you want to use. About 82 of those 500 had died unexpectedly within the first three years after having been moved out of the institutions. Now, you can't say one-to-one that it was the discharge that caused it. A lot of the people living in these facilities are old and elderly. But it's also the case that the DOJ—The Augusta Chronicle that really did a deep dive on this—classified them as unexpected deaths.
The DOJ ultimately had to come in and adjust their timeline for institutional closure on the basis of that mortality. That's a morbid, but unfortunately a real possibility for some of these people who are being discharged. I don't know how large it will be. In Pennsylvania, for example, they shut down a center called Hamburg Center in 2011 and 11 of the 82 residents of Hamburg died within three years of the closure announcement. That's a possibility for some of the residents. I mean, other residents, like I said, may go into group homes. But the unfortunate thing is, once you close these institutions, there's really no opening them back up.
What other states have done—Pennsylvania isn't the first state to move in this direction. Every state has shut down at least one of their state-operated institutions for people with developmental disabilities, and 17 states have shut down all of them. Those states that have shut down all of their public disability institutions placed their most severe cases often in, number one, private facilities, private equivalents to the state institutions, number two, public mental hospitals, so state hospitals for the mentally ill or the criminally insane.
They're not placed alongside the criminally insane, but they are at root the same facilities, or in nursing homes. In Indiana, I think they have about 1,500 people with intellectual developmental disabilities who are being served in regular nursing homes where you might place your own grandmother or something. This is what happens in other states when you close these specialized facilities down.
Brian Anderson: Right. You're shifting the problem rather than helping solve the problem in many ways. It mirrors the entire history of deinstitutionalization. When the mental asylum started being closed for real histories of abuse, the alternative often became homelessness on the streets. A significant part of our homelessness problem in this country is made up of mentally ill people who've been deinstitutionalized or never institutionalized. It's a very significant problem and a human tragedy.
In that context, finally, we should mention what has been a major development in mental-health policy in New York City, where Mayor Eric Adams has sent a directive to outreach workers, city hospitals, first responders saying that they do possess the legal authority to institutionalize severely mentally ill residents who pose a danger to themselves. This isn't really a change in the law, and it doesn't address the deeper problems with the city's mental healthcare, such as the lack of capacity, the lack of beds, but it does suggest perhaps changing attitudes toward the severely mentally ill or greater recognition that we're not dealing with that population effectively.
You could see this even in a recent sympathetic New York Times profile of a famous psychologist who's written for City Journal a number of times, E. Fuller Torrey, who has long advocated this kind of a policy that Adams is now advocating. I wonder what you think about that and if that's a heartening sign.
John Hirschauer: I think it is, and it's funny you mentioned E. Fuller Torrey. He's written several books that are canonical and definitive on deinstitutionalization, but one that comes to mind in the context of New York is his book The Insanity Offense. I think it was written in the '90s, and it talks about how deinstitutionalization on the mental-illness side, moving away from the developmental disability side, how it really played out over time, and just how that played out in New York as well.
There is, I think, a misconception when people talk about deinstitutionalization, and this is something you mentioned earlier, people assume that that means that all of the institutions were closed when it's probably more accurate to say that they were downsized. The Pilgrim Psychiatric Center in New York, which housed like 5,000 patients in the 1950s and was built in the early 20th century, still around, Pilgrim Psychiatric Center, are still there. It just houses like 300 or 400 people now. The types of people that it's serving obviously has changed. New York still operates 23 state psychiatric centers, which is what they are called.
I mean, other states call them state hospitals, but it's just different nomenclature for the same thing. They haven't reduced the number of their hospitals, though they have closed some, as much as they have their bed capacity.
One thing you notice when you chart deinstitutionalization over time on the mental illness side is, you see that in the early days of deinstitutionalization, and this holds in New York and really across the country, the first round of Deinstitutionalization, so in the '50s, '60s, and even into the early '70s, the types of patients who are being discharged from these hospitals are, for the most part, and this is no absolute rule, but you have people who should have never been institutionalized in the first place, people with "hysteria" or whatever, these neurotic illnesses that today we would never institutionalize someone for.
And also, especially in the '50s and '60s, you might have committed your grandmother who was senile to a state hospital because there were no nursing homes around at the time. It wasn't until the nursing home program really got off the ground in the '60s that people stopped sending their demented elderly relatives to state hospitals. That's another population that was discharged.
You don't begin to see a lot of the negative externalities associated with deinstitutionalization in those early years because the patients who are being discharged are by and large those who handled medication well, and then people in those other two groups who really never should have been in a state psychiatric hospital. But it's then in the '80s and '90s where you start to see the push to discharge even the people on the "back wards of the asylum," the people who were the hardest patients, the hardest cases at the facility, there was a push to move those people out in the name of liberation and all the civil-rights litigation that has been directed by nonprofit groups and even the Department of Justice against various states.
You see this exact phenomenon in New York, where Andrew Goldstein killed Kendra Webdale. Ultimately, Kendra's Law in New York was named after her. He bounced around several different state psychiatric hospitals in New York, tried to get himself committed to Creedmoor Psychiatric Center in Queens and was ultimately turned away because. He himself wanted to get admitted because he's like, "I'm dangerous. I'm spiraling out of control," and Creedmoor was like, "No, we don't have the beds for you." He goes out and he kills Kendra.
Brian Anderson: Yes, it's Kendra Webdale. She was a journalist from Buffalo who was killed by Goldstein, and the law about involuntary commitment in certain cases was named after her.
John Hirschauer: Yes. That's one example where you start to see these negative externalities of homelessness, increases in violent crime, especially in urban areas, really takes off as a result of deinstitutionalization. It's not a one-to-one thing where deinstitutionalization is the only thing driving it, of course, but it becomes a much more significant contributor in the '70s, '80s, and into the early '90s. And then today, I mean, the logic of discharging the hardest cases having more negative externalities is even more true today where every force, it seems like, is a raid against a person's being committed to a psychiatric hospital.
You have state departments of health that are doing everything they can to divert people from the institutional setting, and they're trying to get them in a community-based setting. You have the Department of Justice that's sitting on the edge of its seat waiting to pounce and litigate as soon as too many people are in psychiatric hospitals. You have all of the advocacy and nonprofit groups that are putting pressure on states to reduce their inpatient capacity. If you think about the type of person who can clear all of those hurdles and still be admitted to a state mental institution in 2022, it's a pretty hard case, right?
I mean, these are really the sickest people. And I don't mean that in a disparaging way, but strictly speaking, they’re often the most mentally ill people. No rule, again, is absolute, but most of the people who are living at these state hospitals in 2022 are just several orders of magnitudes sicker than the average patient at a state psychiatric hospital in 1950. When these advocacy groups pushed to close down beds in New York—and this is something that we saw with Marshall Simon, who recently pushed someone in front of the moving subway train. He had been in and out of Bellevue. He was in and out of state hospitals, in and out of state psychiatric centers.
The state of New York is now in its 10th year of its "transformation plan" to reduce the number of state psychiatric beds available in the name of community-based settings. I think it's heartening, to your point. I just read today that Kathy Hochul wants to budget 1,100 new psychiatric beds, which I think is excellent. I mean, that almost doubles the state's capacity. Now, where those state beds are going to be located, whether they're going to be in the state psychiatric hospitals, or whether they're going to be in emergency room, that will color the outcome of how far I think those 1,100 beds are going to go, but it's definitely a step in the right direction.
I'm heartened to see, even if it's too little, too late for many of the victims of this policy, I think, that any progress is good progress on this issue.
Brian Anderson: Well, John, that was very illuminating. Thank you for walking us through both the situation in Pennsylvania with the developmentally disabled and addressing this analogous situation with the severely mentally ill. Don't forget to check out John's work for City Journal, including this wonderful story he's done. We’ll link to his author page in the description, and that's at www.city-journal.org. The story, again, is called “The Last Institutions.”
You can also find City Journal on Twitter @CityJournal and on Instagram @CityJournal_MI. John Hirschauer is on Twitter @JohnHirschauer. As always, if you like what you've heard on today's podcast, please give us a ratings on iTunes. John, thanks again very much for the terrific story and for coming on 10 Blocks.
John Hirschauer: Thanks so much for having me.
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