Chapter 6: Institutional Change

00:00:00.50 - 00:03:33.34

INTERVIEWER: If you can talk to me again about how you tried to-- whilst creating the new community system, you were also trying to make some level of improvement in the institutions. There were vacancies for superintendents. So how did you approach that?

ED GOLDMAN: Well, when I first started, there were 10 institutions. There were three superintendent vacancies in the 10. And I didn't see why someone needed to be a medical doctor. Wouldn't preclude a medical doctor, but why the requirement, since it's basically a management position in human services. It's overseeing an enormous multimillion dollar budget with thousands of workers. I don't know how a physician's training would prepare one for that. But like in any discipline, you could find someone who moved into more administrative or management things, but I really thought that was unlikely. So I went to civil service to try to change the requirement of a medical doctor being the only person the only background that would be acceptable to be a superintendent. And they refused to change the rules-- the civil service requirements. And after many meetings of trying to get them to understand that what we wanted are people who would help reduce the population in institutions because we were developing a community program that would allow people to move back into their home communities. So I finally just said to the head of civil service that we're not recruiting. We're not going to replace these positions with medical doctors. And instead I will appoint acting superintendents of people who came from backgrounds with skills that we were looking for. And they eventually relented. So I was like a bull in a china closet I must admit in reflection. I didn't know at the time what I didn't know. And in many ways also, many people perceived me because I was appointed by the governor as being the, quote, "governor's boy." I think in all the time I was in my position, I saw him twice, both on stages signing the right to education. I had no communication with him. But if people wanted to believe that I had some special influence from the governor, I used it. And I played that tune to get people to move, particularly the Department of Education when we were trying to implement the consent decree and how that would roll out in school districts and intermediate units all over Pennsylvania. So those were the little strategies. And then I tried to work with the Associated Press reporter in Harrisburg who would come by the office to learn what we were trying to do and actually learned afterwards that he would go in the evening to some of the new group homes just to sit down and have dinner and never write a story about it. He just wanted to learn how was this-- what were we doing, how would it work. And then that would be part of his background when he had stories to write.

00:03:33.34 - 00:03:40.15

INTERVIEWER: And what was that Associated Press' reporter named?

ED GOLDMAN: My recollection, because that's a long time ago.

00:03:40.15 - 00:12:43.04

INTERVIEWER: So as you were creating this new community system, trying to make some improvements to institutions but knowing that really the goal was to have everyone living in community, Judge Broderick, the judge famous for closing the Pennhurst State School and Hospital, once asked the question of those wanting to close the institution, how did they know that the residents would be better off in the community than in the institution. How did you know or what made you feel that former residents of institutions would be better off?

ED GOLDMAN: Well, we knew that whatever would be made available in the community could not be worse than what we saw in the institutions. And when I learned about normalization, I then became a proselytizer. I would stop two people on the street corner and start talking about it. I borrowed, with Wolfensberger's permission, all his, in those days, overheads, the acetates, and did a dog and pony show about normalization before I was commissioner and even while I was. So part of it was educative to teach what we wanted to do. But also why and how. And so we just knew. One example was in Nebraska, the eastern Nebraska community organization for the retarded whose initials were ENCOR is where Woflensberger was working when a lot of this occurred. And it was the first evidence of developing a community program in the United States. What's interesting is, as successful as that was, it was not taken aboard by the state of Nebraska. So the rest of Nebraska was still feeding into the institutions. And I always remembered there was someone that I met whose career started in institutions because that's where one worked. There were little or no community services. He was a unit director at Beatrice, which was the major institution in Nebraska. And he gathered all the staff together. They had a woman in her 30s who lived her life in a crib who was profoundly disabled. And he gathered his staff-- doctors, nurses, educators, social workers, physical therapists-- and he said if money were no object, could we develop a better program to make her life work here in the institution? And they were able to do that. Then he said suppose we found a nursing home in the community. What would it take to support that nursing home to make her life better as best as you people know how to do? And they were able to do that. And then he asked the threshold question. He said if we could find a home in the community with a family who would be willing to take this woman into their home, what supports would we need to bring into the home to make her life better? And they went about doing all of that. And then he asked them the threshold question. He said given that, we can do this better in any of these settings, where do you think she gets to live? And he told me there was silence in the room. And he said the answer to that question is a political question. That story resonated with me for a long time, because it really is. As an example, even today in Pennsylvania, there are four institutions still left with about 1,000 people living in the four places. The most recent institution-- the most recent institution in Pennsylvania to announce closure was Hamburg State School and Hospital in 2017. At the time that the closure was finally announced, the average cost per person in Hamburg was $466,000 a year per person. I could take two of those people, live in the penthouse at a hotel in downtown Philadelphia with room service bringing in the best competent professionals, and I'd be out playing golf all the time. This is insane. And taxpayers don't even know this. The average cost now in 2017 for the 1,000 people remaining in the other four institutions is over $400,000 a year. We know that we can do better for them for a lot less money. They need to get out. And they need to get out now. And there's some bills in the legislature proposing the closure of the remaining four. We'll see how far that gets. So in the early days, we just knew from the ENCOR experience, from reading about how Scandinavia was starting to develop similar community programs based on this new concept called normalization, and that it worked. I learned when I was working in New Zealand that there was actually a study done to see if that could be proven through data. And interestingly enough, Judge Raymond Broderick, who was the presiding federal judge over this long running suit about what's happening to people in Pennhurst and whether they were being properly served, I still remember his words since almost everybody at Pennhurst was civilly committed. He said absent the reasons that they were committed, which was education, treatment, rehabilitation-- he says absent that, it becomes incarceration. And that's in violation of the 14th Amendment. So then the real concern was-- and he said this to Tom Gilhool, the attorney of record. He said if I decide to close Pennhurst, what will happen to these people? How will we know would they be better off? We had a long history of closing mental hospitals and just throwing people out on the streets. It was horribly done. But of course, by this time in the 1980s, there was already a more robust community system with built in support for families and the like. But that was an interesting question for a federal judge to ask. And as a result, the Institute on Disabilities at Temple University was contracted to carry out such a study to determine what would happen. And Dr. Jim Conroy was the principal investigator with the current director of the Institute, Celia Feinstein. And they tried to measure everything that was known that you could measure about the people at Pennhurst. And they created what was called the functional twin concept. They knew that even if Pennhurst was announced to close overnight that it would take some time for everyone to find support services in the community. So they paired people of like age, functioning level, self-help skills, whatever intellectual scores would determine. And as people left, they compared the people who stayed behind and their progress and the people who were now living in the community who were their functional twin. And in every way that social scientists knew how to measure, people who lived in the community prospered. No one who remained behind that was their functional twin progressed in any single skill area-- language, self-help, you name it. So the data was unbelievable. And I read about this study when I was working in New Zealand. And I used that as the final proof that people were better off in the community. There's all the ethical and moral considerations that carry some but less weight sometimes than proof. And not only that, but the proof was people could prosper better in the community at less cost to the state.

00:12:43.04 - 00:16:12.58

INTERVIEWER: But all this was unknown to you when you were--

ED GOLDMAN: That's correct.

INTERVIEWER: So how did you-- how did you know? Did you have sleepless nights wondering whether this would work? I know families were very fraught about it. Some people were excited for options. Others not so much.

ED GOLDMAN: Well, clearly, there was and still is a large number of families who do not want this to occur. Initially, I couldn't understand why. But the more I thought about it, it made sense to me from their perspective. Basically, these families were told years-- many years often-- to put your son, or daughter, brother or sister away and get on with the rest of your family's life, and that these are professional people. They will take good care. And so they made peace with that decision. The history is that most of the families who oppose this because basically, here's some new people on the block saying that your family member will be better off. We did not have the proof. And basically, it was a trust thing. And why should they trust the same people who never provided support for their family in the first place? The latest data that I have seen about visitation is that many of these staunch families who are in opposition to community services unfortunately rarely visited their family member while in the institution. Well, many of them did, but many of them, like in places at Pennhurst, when they would come to visit never visited where their family member lived in the units. They were taken to a different part of the campus. And the person would be brought to them to show I guess a better picture of what life was like in the institutions. But for all of us, from what I learned from ENCOR, what I learned from Scandinavia, what I learned about normalization, what I had seen with my own eyes about how horrible the circumstances were-- was it an act of faith? I guess in some ways maybe it was. But we had some beginning evidence that it worked. And so one of the first things that I remember doing in the office if we were going to move ahead to create this community living program, who could you find that had any experience outside of this small enclave ENCOR in Nebraska? So I knew Wolfensberger had worked there. I called him and asked him did he know of anybody who he would recommend that had some knowledge about starting group homes in the community. And he gave me the name of a guy who I then called. And Mel Knowlton decided to come to Pennsylvania and spent his entire professional career in whatever the name of the office has changed. It was the office of mental retardation in the beginning but I think it's now the office of developmental programs. Mel recently retired. He started it.