It numbs you, a nightmare, a horrible disease. These are just a few of the ways people have described mental illness in their lives. Whether it’s you, your child, or a friend, mental illness impacts all of us in some way. It’s why Transforming Health is committed to covering mental health and the impact it has on our lives.

It’s like I lost him and it just — I can’t get him back. I want to get my son back.

This is such a horrible disease. I don’t know how I can describe it.

I worry when I’m dead — who’s going to look after him?

In a three-part series, we’ll examine the history of mental illness, it’s effect on our children and schools, and the entrenched stigma that’s connected to mental disorders.

Announcer: Today, healthcare is about empowering people to take control of their health. Whether creating a fitness routine, choosing the right procedures and medications, or adhering to treatment for a chronic condition, Capital BlueCross — dedicated to underwriting Transforming Health for the good health of the community. Capital BlueCross, live fearless. WellSpan Health, helping patients reach their health goals through a coordinated system of positions, hospitals, and convenient healthcare services in communities across central Pennsylvania. Learn more at wellspan.org. WellSpan Health, for the journey that is live. Support also comes from viewers like you. Thank you.

Hello and welcome to “Transforming Health: A History of Mental Illness.” I’m Keira McGuire. Over the next half hour, we’ll look back at the history of mental illness in Pennsylvania, which includes rise and fall of institutionalized care and the continuing closure of state hospitals. We’ll hear from families who have been impacted by the most recent closure. Plus, we’ll look towards the future of our mental health system in Pennsylvania, what’s going well and what are the challenges we face. First, imagine a time when a mental illness would be your ticket to a life of segregation and possible abuse. It happened for many years right in our own backyard.

There’s always been a stigma. Some that argue that religion and a sense of god not showing favor on some folks. The idea of demonic possession. Reaching back into the 18th century, you’d hear references to fools, to lunatics, to the insane, and other more derogatory representations as we would think of it today.

Often times, people are literally locked in basements in private residences or left to wonder the streets.

And so you have a housebound individuals. You have people who were placed into almshouses, other kinds of less formal psychiatric hospitals and sanatoria, and eventually, the rise of large institutions.

So, when state institutions were created, they were done so with the best intentions. They were done to be the most compassionate way to service a population.

It was actually, at the time, considered groundbreaking nationally, and of course, in Pennsylvania, it was the first attempt for publicly funded, what they called at the time, humane treatment for people with mental illness. Harrisburg state hospital was built to be a self-sustaining community. They had a farm. They expected residents, or patients, to be working on the farm to have a productive day, to have staff support, and then the state hospital system in Pennsylvania grew from the original Harrisburg state hospital throughout the rest of the 1800s and early 1900s to about 24 state hospitals.

If you have 5,000 people in the same institutional setting, how do you simple manage adequate care? Proves to be impossible, and there go the controversies of the late 20th century. Bad things happened.

When you look at the history of some of the state institutions, horrible things were done, because that’s the nature of an institution. When there’s one group totally in control and the other group doesn’t have any control at all, bad things happen. Philadelphia state hospital byberry is perfect example of that.

And the — and the beds with shackles where people are just handcuffed to the bed so they can’t roam around. The use of isolation, the use of cages. Being handcuffed is a form of not only treatment, but punishment, sometimes to run for days. It’s hard to justify that as a moral or even a rational basis of treatment for someone who has a cognitive or mental disability. In terms of treatment, by the 1930s, there was a — both a kind of ethos of compassionate or humanitarian concern, and seeing mental health issues as a problem of a disease of the mind.

But it was the late ‘40s and early ‘50s when there were some breakthroughs. Thorazine became known to be an effective anti-psychotic and lithium became available to treat people with manic-depressive disorders also in early 1950. So, for the first time, there were options available from a medication perspective.

We really started to see a decline in people being served in state hospitals in the late 1950s. And in the ‘60s and the ‘70s, we had, of course, the civil rights movement where we saw large groups that were formally not really in the mainstream really move more into mainstream society.

But the groundbreaking change was in 1963. President, then, Kennedy signed into law a national communal mental health act in 1963, which started to create the foundation for a community-based mental health system. And then Pennsylvania passed legislation in 1966 called the mhid act of 1966 which established a state-funded, county-operated system of community-based care for people with mental health disorders and people with intellectual disabilities. So, those things were groundbreaking because it was literally the first time that Pennsylvania started to fund a community-based system as an alternative to institutions. And so, that push began the push to deinstitutionalize people.

In the 1980s, because of the public uproar over institutions, you begin to see a concerted effort to move people who can be moved back into the community. And that’s kind of the most recent phase in a long history of evolution. The notion with the proper supports, the proper services, the proper supervision; people may be able to leave institutions and live more independent lives. It’s not only a medical decision, it also comes to be seen as a civil rights decision, the right to freedom, the right to liberty.

In the 1990s, early 1990s they started a dedicated funding stream called chipp, with two ps — community hospital integration program project. Which was a program where the state provided additional funding to counties to close state hospital beds and then use those funds to develop community-based services and supports. Then there was also the olmstead act in 1999 which the supreme court ruled that the people should be given a community alternative as opposed to institutional care. So, basically people shouldn’t be kept in institutions simply because of a lack of funding.

Today, we have less than 1,600 people being served in state hospitals. So, we went from about 25 hospitals owned by the state at one point to today, we’ve got six.

It’s difficult to at some point to justify having these large institutions that are costly. I mean, these are white elephants at this point. These were built a long time ago. They have a lot of cost associated with them.

We are getting ready this year to close Norristown state hospital civil unit. We now understand that community living is the best option for a lot of folks. And if we can serve people in the community where they’re surrounded kind of their natural community supports; their family and friends, that that’s going to be better for individuals than being isolated in an institutional setting. We’ve been in a time of change and we continue to be in a time of change. You know, for state hospitals, the olmstead decision means we have to make sure that we are serving people in the least restrictive setting and that we’re doing more community integration than we’ve done historically. And from a justice perspective, that’s absolutely the right thing to do. We’re embracing that. But, it definitely is a time of change.

Announcer: this most recent closure of the civil beds at Norristown state hospital effects real people, as you’ll hear from two Pennsylvania mothers, the closure is a big deal in their lives and the lives of their children. And it has them concerned.

I’m making it a short story, but it’s a long, long. It could be a movie. A nightmare.

There’s my beautiful son. He was a normal kid. He played football, he played lacrosse. He loved cars. Started to get a little sick around 18. He was playing football and when he was last year in high school, he kept saying that they were jealous of him. But, I didn’t nothing of it. And he graduated from high school and then he went into the army. The worst day of my life was on a Saturday. My nephew was getting married. I was going to the reception and I was so happy. And the phone call comes from the army and they say your son is mentally ill. We’re gonna send him home. He’s schizoaffective. And they put him on a plane and send him home. And he came home, he was so sick. And I didn’t know what to do. I didn’t know nothing about mental health. And I had to call the police. I told them not to put the sirens on please. Went to the hospital. Came out after two weeks and after that it was one hospital after another. One place after another. And me trying to get the private psychiatrist. I had to fight for him for everything. They put in a place, and they kick him out. He ran home. He came home. He was out. In and out. In and out. In and out all the time. Finally, you know, he was so sick. I said put him in Norristown for a while. I begged the doctor. He was there for eight years. I went to see him every week, but he was getting better. He got better. There was the greenhouse over there. He worked in the greenhouse. And he started to get better and better. Finally, you know, there was no reason for him to be there anymore. [ Cars driving by ] the people that were there were not educated to be there. And they don’t even get paid enough to do that kind of work, okay? I don’t blame them. He became psychotic in this ltsr. They called the police instead of taking him to the hospital. He resisted arrest. He was sick. He was psychotic. They should have taken him straight to the hospital. No, they took him to a regular jail and they put a beehive over his head and he banged his head in the jail all night long. He never been in jail. We went and I saw him. It was so sad. You know, I hadn’t seen him for a while. And he was like a robot. He was just like a robot, overmedicated. And he was scared. Like even if I went to touch him. Like he was not himself anymore. My strong healthy son, you know? They do not belong in jail. They have to find a place for them. And they’re closing every place. Very, very sad. Not just for my son, but for everybody else because that was a safety net for the mentally ill.

It’s really a big loss that that hospital is closing. This is such a horrible disease. I don’t know how I can describe it. It’s just — it numbs you. All of a sudden she just started to get very paranoid. She was married at the time and her husband really took pretty good care of her. But, I was devastated because this is what happened to my family. I grew mostly from home to home. I lived in St. Joseph’s home for destitute girls for a while because my mother had severe mental illness. And here it was again in my family, effecting my precious daughter. I haven’t been the same since. I worry about what’s gonna happen to her. And all mentally ill people who don’t have families to go to. Like, they’re closing the hospitals and they said to go live with their families. I just read it. But, some of them don’t have families. They’ve been abandoned by their families because they don’t understand the illness. She says she wants to come with me, but I don’t — I don’t believe she’ll be able to live on her own ever again. Not ever. You couldn’t sleep, you couldn’t go to the bathroom; she’d be out the door. She’s still like that today. She still wanders the streets. And I’m afraid she’s gonna wander and I’m never gonna see her again. We found her about three times, lying in a parking lot. She disappeared for six weeks one time. And my heart and — it was the worst thing in the world, not knowing where she was. And it’s really a nice facility, I have to say that, but it’s gonna last only two years. I’m worried about what’s gonna happen to her after two years. What can I do to help her? What can we do to keep her home so she won’t die on street? I don’t want her dying on the street alone.

I’m gonna die soon. Know? Where is gonna be? “Oh, they can go live with their family.” Where? The family’s not gonna be there for him. Where’s he gonna go? It’s like I lost him and it’s just I can’t get him back, you know what I mean? I just cannot get him back. I want to get my son back. At least, I want to see him in a place where he can live. You know? I don’t know.

Announcer: as our mental health system continues to move towards community-based care, many like the two moms you just heard from wonder what’s next. With challenges like funding, and staffing, and waiting lists; how secure is community-based care?

Norristown’s not closing. Norristown is becoming what everybody has said is the huge need, which is forensic beds.

It is a fact that people with mental illness get arrested. So, statewide and nationally there’s been a big push to reduce the number of people with serious mental illness in prison.

We have individuals sitting in jails with mental illness that are not getting the treatment they need today. Not in as timely of fashion as we want. This has been an issue around for years. And when we have a state hospital that doesn’t have room for them, that becomes a challenge. It’s a big deal to close a facility and move people into the community. We know it’s the best thing for most people and what most people want. But, it sometimes still has challenges.

Families are simply scared and concerned that their love one not come into the community and then have things really fall apart. It’s a valid concern.

The biggest challenge I think we have is developing those community placements and the time it takes to do that. We had hoped to have Norristown state hospital on the civil side closed, I think last year was our goal.

This particular closure has been slow and it really does allow the counties to identify what is needed and then to develop it. And sometimes that takes longer because they might have to, you might have to buy a building, they might have to renovate a buildings. There’s a lot of things that go into that. But, by the time everybody leaves the civil unit of Norristown state hospital, there should be programming in place to meet that person’s needs.

There’s a what I call a continuum of residential services. We have some that are what I call very restrictive. And very treatment focused. We have a long-term structured residence. And then we have community residential programs that are groups homes that are staffed, some of them 24 hours, some of them are staffed maybe only 16 hours. And then we have personal care homes that are a bridge between people who need medical care in addition to psychiatric care.

How you doing, harry?

Fine.

Doing pretty good?

Yeah.

Good.

This was a major improvement, just the lifestyle they have here. This is more like home. They have their own rooms. I’m glad he’s here and not where he was because that was not very livable so to speak. And they were treated like prisoners really. Dad loves you, okay?

All right.

Okay. Bye.

Bye-bye.

Okay.

I’m worried when I’m dead — who’s gonna look after him? Okay. Sorry.

We usually have somewhere in the neighborhood of 50 people waiting for residential services in all different types. Part of our system is dependent on people getting better and moving through the system. As I say in our residential continuum, no one goes in until someone goes out because it’s fixed beds. Because of a pretty much lack of funding, we haven’t really done much community expansion in the last ten years.

I look at it as a tripod. There is the county-based dollars. Those are state dollars that are allocated every year. Then there’s the state hospital dollars, so when a state hospital calls or even when beds close and those — a percentage of those dollars come into the community. And then you have Medicaid. Medicaid is the big buck. The dollars that came as a result of either a hospital closing or a bed closing. I don’t think they’ve ever had a cost-of-living adjustment attached to those dollars. And the community-based dollars, those haven’t had a cost-of-living in a long, long time. In the long run, it stretches a county way too thin.

From a funding perspective, our system took a 10% decrease in the sort of state/county funded system. 10% Decrease about eight years ago and its been flat funded ever since. So, we’re trying to operate essentially on early 2000s funding level in 2019. And so, that creates some gaps in services. It creates gaps in quality. Staff recruitment and retention for all of our providers is an issue. Maintaining a quality trained workforce is an issue. Given our current sort of average waiting list of 50, I’d like to have 15 more beds in one kind or another. We’ve been consistently asking for at least a restoration of the 10% cut we had. In a perfect world, we’d be adjusting that for inflation. I mean, I feel like a 20% increase is about what we need at this point, but given that we haven’t had any, 10% would be better than nothing.

It’s one thing to have the will to close an institution. It’s another thing to have the will to support someone in the community. Removing people institutions is not the end, it’s just the beginning of another process. And it’s one that requires enormous public will, enormous financial commitment, and enormous human compassion.

Announcer: I’d like to thank all of guests for being so open with their experiences. Please join us next time as we continue to share stories and transform health. I’m Keira McGuire. Thanks for watching.

Announcer: today, healthcare is about empowering people to take control of their health. Whether creating a fitness routine, choosing the right procedures and medications, or adhering to treatment for a chronic condition, Capital BlueCross — dedicated to underwriting Transforming Health for the good health of the community. Capital BlueCross, live fearless. WellSpan Health, helping patients reach their health goals through a coordinated system of positions, hospitals, and convenient healthcare services in communities across central Pennsylvania. Learn more at wellspan.org. WellSpan Health, for the journey that is live. Support also comes from viewers like you. Thank you.

 

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