Chapter Five: Tenure as Deputy Secretary of Mental Retardation for PA

22:05:56:20 - 22:07:26:17 Lisa: Steve, you had said when you left Philadelphia, you had wished Pennhurst had been closed, but it was closed while you were Deputy Secretary for the state office of mental retardation services. One of the things I've always been curious about is, why did the transition from the institution to the community happen so quickly?

Steve: I think it was a gun to our heads about contempt of court citations, and one of the other things that happens when you're closing institutions is they become obscenely expensive as you get down to a small number of people there, and at some point, Pennhurst, I don't think it ever lost its federal certification at the end, it may have, but it was running on hundreds of thousands of dollars, just sort of going down the drain, at a time when there were growing waiting lists, and priorities in the other parts of the state as well. Pennhurst was the place that the lawyers sued. Western Center and Embreville were easily worse than Pennhurst, but that's not the place -- I mean, they had to pick a place, and Bill Baldini's work exposed Pennhurst. He was a reporter from Philadelphia. He could have gone to Western Center, he could have gone to Polk Center, he could have gone to other places and seen equally horrible things. He happened to go to Pennhurst, and I think he did a real service for the state by doing that, and he happened to have the guts to knock on the Lieutenant Governor's door and say, Lieutenant Governor, this is going on in your state.

22:07:29:00 - 22:09:58:14 Lisa: So at one point, I believe, as people moved into the community and then required supports in the community, I think that was maybe in the '90s, the group of Pennhurst class members who were being supported, who were maybe about five percent of the disability population, but the supports and services they needed drew on roughly a third of the income allotted, the resources allotted for the folks with disabilities. So consequently, lots of people were underserved or perhaps not served at all. So I guess the first question is, why did it cost so much to support Pennhurst class members in the community?

Steve: Well, I think people grossly underestimated -- there was this whole idea of we're going to do it in the community, it's cheaper, and I still make people, when I do presentations on deinstitutionalization, raise their right hand and swear never to say that. And it was cheaper, mostly because we paid staff less. That was the reason it was cheaper, and people had been in Pennhurst a long time, some of them were getting older, so they had increased support needs, and especially with Philadelphia, doing business in Philadelphia was a lot more expensive than doing business two counties away. And it's a city, so insurance rates were high, labor rates were high, food costs were high, transportation costs were high, housing was expensive. And then the infrastructure was barely built, the infrastructure to do training. You know, the state institutions, for better or worse, trained their staff. They had training and staff development departments. We didn't have that in the community in the beginning. They had staff doctors and nurses and dentists who did medical care that was sort of hidden from the cost structure, because they didn't know how much each person cost in the institution, they just knew the aggregate cost divided by the number of people divided by the number of days. So once we really started figuring that out, and I think there was a lot of -- because the provider community knew state had a gun to its head and then the city had a gun to its head, and the federal courts, Judge Broderick was I think a passionately committed jurist who understood after awhile the civil rights issues and all this, and the human dignity and freedom issues. So people took advantage, and the city didn't have the capacity then. I mean, this was back before -- I remember we got our first personal computer while I was still in Philadelphia, but this was back before you could do that. You could really analyze things. You had to do it by hand, and it was a very different day than it is now.

22:09:58:23 - 22:10:57:00 Lisa: You talked about the city and the state having a gun to their head. Who was holding the gun?

Steve: It was -- there were two or three decisions at the federal court level that I think two of them -- Haldeman and Youngblood both went to the Supreme Court a couple of times. So it was the judge, Judge Broderick, in the third circuit, holding the gun. It was Mr. Gilhool, it was Mr. Haggerty, it was Mr. Ferleger. I think there were probably others. There was competition among who was going to do the best for people with disabilities among the group of disability advocacy lawyers. So when you're facing a possible contempt of court citation, and when the city's lawyers are assessing that and saying it's likely that it'll happen, because we haven't done everything we agreed to, and you know it's going to be thousands and thousands and maybe millions of dollars in fines, that's a lot of pressure.

22:10:57:26 - 22:12:11:15 Lisa: Did you feel that the expenditures for the Pennhurst class members were justified?

Steve: Some of them, some of them. There were times where you look at things and go -- but you had 15 minutes to look at something and maybe negotiate with a provider, and then you had to go to a community meeting because they were opposing a group home that was being opened, and people were calling you up, saying what progress have you made this week, what progress have you made this week? What are the numbers, what are the numbers? When are these 12 people going to move out? I had a call from this lawyer about this person, what are you going to do about it? And again, we did some things. I remember a conversation or two with providers where I would literally on the weekend call them at home and say, we have to get these three people out next week, go rent a house, go buy a house, go see them and get them out and do it now -- no contract, no handshake, just this conversation over the phone, and they would do it.

Lisa: And was it more expensive that way than doing it in a planned, thoughtful, analytical way?

Steve: You betcha, but again, when you have that pressure of fines and contempt of court citations and the city council sort of breathing down your neck because you're spending so much money, even though most of it was state and federal money, they still -- it was a combination of those things. It was the times.

22:12:27:14 - 22:14:13:27 Lisa: So Steve, how did you reconcile sort of the needs and the requirements of the Pennhurst class members with the fact that so many people were waiting for services?

Steve: Oh, it was unjust. I mean, it was wrong, but it was up to the state to fix that. This was in the beginning of the Medicaid waiver program -- I think this got the first Medicaid waiver program in '82, and it was structured in such a way that it was mostly for closing institutions. The only way you could serve people on the waiting list was either with pure state or local money, which was not available at the beginnings of a recession, or with six bed ICFMR programs. That's how you could serve people on the waiting list. And again, if you look at the state's perspective, and the city's perspective, and there were other lawsuits in the state about other institutions, they had the Department of Justice sort of looking at Ebensburg, I'm sorry. You had one or two other things about these small mental retardation units as the psych hospitals that we closed. There's only so much money -- excuse me -- and so where do you go? No one had yet established, and I think the law is still unclear, do people living with their families have a right to anything? And as I remember, under the '66 Mental Health Mental Retardation Act, they had a right to a plan, but not a right to services. Now maybe that's changed since I left. I mean, I've been gone since 1993, but who do you serve? People where there's a legal ruling saying you're going to get these people out, or you had a settlement agreement, or people waiting, and there was, when I was in Harrisburg, some litigation around waiting lists and around at least understanding who was waiting and then what they were waiting for.

22:14:21:00 - 22:16:27:25 Lisa: So we certainly talked about this a little bit earlier, not all family members were happy with Pennhurst being closed, and maybe one of the most vocal or organized of the parents who opposed the closure of Pennhurst was Polly Spare.

Steve: I remember Polly.

Lisa: Yeah, I wonder if you could tell me a little bit about your interactions, when you were -- sorry, when you were Deputy Secretary -- with Polly or other parents who opposed the closing of institutions. I'm going to ask you -- thank you.

Steve: Well, I think Polly was a person who was in a spotlight that I don't think her life prepared her for, but I think she was sincere in trying to do what the right thing was. When we formed our planning advisory committee, Polly and one other person from that group -- I don't think it was called Voice of the Retarded. She was on the national president, but I think the state group was Parents and Friends, or something similar. Because see, their voice had to be heard, because they would raise issues that were real. I mean, somebody not getting the care they were supposed to get in the community, families not being informed. There were others involved with other facilities, other people who were very, very destructive. I didn't see Polly as destructive. I saw her as somebody who had a very definite point of view, and would sometimes bring it up in ways I think that bothered people, and I think some of the people who were pushing the strongest, the advocacy groups pushing the strongest were institutional closures, sort of dissed her, and dissed those parents, and I think that was a mistake. They saw it as an us versus them versus things are changing, here's how we're going. So we got criticism for including Polly and her compatriots, but I think it was the right thing to do, that it was their kids, and they were concerned about their kids, and what their kids were going to do, and maybe if in hindsight we might have engaged them differently, but I'm not sorry we did.

22:16:28:09 - 22:17:14:14 Lisa: I'm sure the self-advocates have very strong feelings about Polly being included in pacts or in any kind of discussion.

Steve: Yeah, I think they did, and so did The ARC, and self advocates had some issues with the The ARC and with the providers, too, and the question is, do you have everybody at the table or do you just have some people at the table? And when I got to Harrisburg, the sentiment was, you just have some people at the table, you don't have everyone there, and I just thought being inclusive was more important than being exclusive, that the trouble with being inclusive just takes a lot more time, and the whole Everyday Lives thing, if you were exclusive you could have done in a year, and it took us like two and a half, because everybody had to sign off. Everybody had to finally say, this is what we believe in.

22:17:15:29 - 22:18:54:06 Lisa: Now I'm going to quote you again. I read an article in the Inquirer, I think it was 1992, so you were still Deputy Secretary, and they were talking about the closing of institutions and life in the community, and you were quoted as saying that deinstitutionalization was a negative goal, and instead you said the goal was to give people choice in their lives, let them decide, take them out, show them what's there, and let them see what they want to do. Can you tell me a little bit about what you might have meant --

Steve: Yeah, I still talk about that. Deinstitutionalization is running away from something -- something that was bad, something that was wrong, and just moving people out, just the movement from a big place to a smaller place isn't really the goal, the goal is going from a place where you don't have control of most of your day-to-day life, where you don't really get to choose who you live with or where you live or how you live, to a time when all those things are present in your life, when you choose who you live with. Because the reality is, most adults with intellectual disabilities are low income, so you might have to live with one or two other people. You're not going to have your own condo in Center City, overlooking City Hall. It's just not going to happen. But to give you control of who touches your body, what time you get up in the morning, what you do during the day, all those other things -- that's the goal, it's to have a rich life in the community. Deinstitutionalization's a vehicle. It's the vehicle to get you to that rich life in the community, but the goal isn't just to close the institutions, the goal is something much more than that, and I think that's why the Everyday Lives thing was done, is let's change the goal from quantity to quality.

22:18:55:19 - 22:20:44:10 Lisa: I'm going to ask you more about that in a minute, but you had mentioned, and sometimes I think people forget there were other institutions in the state, because Pennhurst gets so much attention. While Pennhurst was closing, other institutions around the state were being managed differently.

Lisa: One in fact was even managed by our own university, Temple University, and managed Woodhaven. And I'm curious about sort of the change of direction for those facilities, what that actually looked like. So the change of management, I know that Temple gave up its role at Woodhaven. I'm wondering what their role had been and why they gave it up, if you remember that.

Steve: Yeah, when I got to Philadelphia, Temple was already at Woodhaven, and I think the idea from the state was let's turn it over to university and see what a university can do to one of these places, because it was not -- it was done at a point when commitment to deinstitutionalization wasn't directive number one, and Temple did an okay job. Nothing special, they weren't any better than anyone else, and they were very demanding. I remember a meeting with Peter Liacouras who was the president of Temple, and there was a radiologist who was the head of health sciences for the university who was I think vice president over the medical school under which Temple fell, and he didn't really agree that everybody could live in the community, and we looked at Peter. At that point Temple had been decertified as an immediate care facility, and said, this is inexcusable, we can't pay for this with all state money, you've got to fix this. And I think that led to the decision to pressure on Temple and so I think we wounded their pride by saying, you ain't nothing special. And I think Mr. Liacouras was a very proud man, and I think we wounded his pride.

22:20:45:00 - 22:21:06:10 Lisa: Do did you think that model, though, then of having universities manage centers was a bad model?

Steve: Yeah, it's just not the right thing to do. I mean why -- I still use this sort of phrase, but why try to do a good job doing the wrong thing? I mean, you can't make it a good institution. You can make it a better run institution, you can improve the quality of care, but it's still what it is, it's lipstick on a pig.

22:21:08:00 - 22:23:27:25 Lisa: You refer to Everyday Lives, which was really just an amazing process. As Deputy Secretary, you really reexamined the values of the MR system in its entirety, so I wonder if you can tell me a little bit about that process.

Steve: Well, it's interesting. I had a meeting with some of the advocates. I don't remember all the parties at the table, and it was right after the governor's budget came out that one particular year, and they were beating up on me pretty hard about there's not enough in the budget, and Governor Casey was a very ethical, very sort of proper person, and he had grown up across the street -- he lived across the street from St. Joseph Center, which was an ICFMR in Scranton, and knew -- used to go to mass there, run by the nuns, and your job as a deputy was to defend the governor's budget. The Governor ran on a platform of education, the environment, and economic development, the three E's. And nowhere in there is the word disability, although he was pretty generous to the program for the times. Some people will debate that but I think my interactions were always pretty positive. And they said, you know, you're being evaluated by us based on how much the budget grows, and that's when the idea from everyday life sparked, because we've got to change the conversation from regulations and quantity to what life should be like. Because people respond to how much, how many placements you're going to have, and we're responding to what the regulation said, which -- regulations are a pretty poor substitute for quality of life. They were really about sort of the basics to do business. So we had to change the conversation, and this planning advisory committee, which we had made very inclusive, it had existed before we did change it but that's where that came out of, and I was pretty much hands-off in that process. I said look, you guys can figure this out. We right before we started that process had a meeting with all the advocacy groups, and they were just up and arms and screaming, both at me and at each other, about what the budget had that particular year and what was happening with institutions and waiting lists. So sort of in the middle of all this, I was there with -- Nancy Thaler was there, Larry Pace was there --

22:23:51:20 - 22:25:39:07 and Mel Knowlton was there, who was a longtime state person, Dana Olson, a longtime state person, Joel Galtier, who was a budget person, Joe Church was a budget person, and all really good people, committed professionals, both the career people and the appointed people, and this meeting was just a brawl, and finally I said look, my staff and I can't participate in this discussion. You guys have to figure this out, we're leaving, and somebody come tell me what happens. And so we all got up and left, and I remember there was a Kenny Rogers song, you've got to know when to hold them, know when to fold them, I think it was in the movie The Gambler. So sort of walking back to the office, because we were in a conference room somewhere, said to people, we just can't do that. And that's -- we started to change the conversation then, and the idea -- my commitment to the people who planned it was, look, I think our job as a department, my job as a deputy, is to sell whatever you come out with to the community, and to sell it within government, but you've got to say, you're the citizens, what should the system look like? And that's where that all came from was to just try to change the subject of conversation. And not to say that the advocacy for quantity wouldn't go on, it had to, and licensing is an essential function of state government that had to go on, but how do you change the conversation, and how do you create a vision? There was a vision in the '66 Act. Well this was 1989, '90, '91. It's a long time. Things had changed a lot. How do you change the vision without changing the law? Because I think we were afraid of what would happen if we took the law to the legislature, what kinds of things could happen. Pennsylvania legislature is a fascinating place, and you couldn't guarantee an outcome. You couldn't say, it's going to get better, it's going to address all the issues you want to address.

22:25:39:18 - 22:26:36:22 Lisa: So how did the conversations change?

Steve: We started -- we took in the Everyday Lives things. There's that chart, sort of a pie chart, and we started talking about that stuff. It was in the beginning of -- Michael Smull hadn't come up with essential lifestyle planning, and John O'Brien and Connie O'Brien were doing some stuff, Beth Mount was doing some stuff, Judith Snow was doing some stuff, but it was just beginning to surface about person-centered, whether you called it Essential Lifestyle Planning or PATH or any of those other things, just starting to surface. And it certainly -- people in I think it was Michigan, Vermont, New Hampshire, were all doing this very progressive stuff -- different structures in Pennsylvania. I think Michigan came the closest. And so looking back on it now, said well why didn't we just go to person-centered planning and individualized budgeting? Well, the thoughts weren't there yet. I think the thoughts were evolving out of Everyday Lives and other things, but the thoughts weren't there yet.

22:26:37:02 - 22:28:03:25 Lisa: So what overall impact do you think those conversations did have on the way systems were delivered, or services, sorry, were delivered?

Well, I think I was there for another two years, Nancy Thaler was there for another ten years. So you had essentially 16 years of sort of consistent vision and leadership for the system, and I think Pennsylvania, among big states, is still unique in how it tries to support people, and I know there's a crisis right now, and that's going to change a lot, not for the better, probably. But it started to change this whole thing from CLA and day program to how do people want to live and how do you figure that out. And some of the steps you need to do, because the program's financed with Medicaid, and it's sort of an unnatural fit -- Medicaid was never meant to do some of these things -- how do you do that within the context of a Medicaid-financed system? In a state with a graying population, meaning there would be more and more people who need supports, and against other competing needs. It's not the only thing the government does. So at least if you have a vision, or it's a common vision, you can convey that and people can agree to go forward on that vision. Absent that, you have a lot of people running around in different circles, saying different things, and one of the hardest things for a legislative body to do is to listen to multiple inputs that are conflicting, and then make a decision. They would much rather have sort of unanimity of focus, and that was the goal.

22:28:04:22 - 22:30:42:13 Lisa: During your tenure, IDEA was expanded federally to include early intervention, but you didn't think that went far enough, and you made it go a little further in Pennsylvania.

Steve: Boy, that was interesting. Actually the second day I was a Deputy Secretary, second day, [Secretary] John White says we're going to talk to the governor about this new law, 99-457. That was the law number, the IDEA expansion number, and I knew enough about it to say okay, and the staff were already on this like white on rice. I mean, the career staff really had ideas, and so we're walking to the governor's office, and as a deputy, you didn't see the governor very often -- a couple times a year, and it was usually around a problem or an issue. And the Department of Education wanted to have Part H, which was the part for kids from birth to age three, and so we walk into the governor's office, John White gets called out, John was the secretary, and he was called to do something else urgent. So here I was with Tom Gilhool, and the governor, and the governor's chief of staff. And the governor and Tom had gone to high school together, and Tom very much wanted to have Part H, and the governor looks at me. Why should it stay in your office? Because we had an early intervention program. And I said, well I think we've got a whole system out there that's really good with families, and I said school systems are not good with families, and we can nurture and support and help families with their kids with disabilities. And the governor said, you're right, and that was the meeting. So it was my second day, he was Gilhool Lewis' friend, and a brilliant advocate, and my boss, John, who was Gilhool's equivalent, because Gilhool was the Secretary of Education, John was the Secretary of Public Welfare, wasn't in the room. So that was my first formal interaction, that was the first time I actually met Governor Casey. And it was fascinating, but almost every interaction with him after that was based on that very same kind of discussion. It was always what's the right thing to do. You don't worry about -- he would say -- once a year, twice a year we'd have dinners, all the deputy secretaries who were appointed would get together and have a dinner, and he would come periodically, and say, first of all, the secretaries tell me they run the government, I know better you guys run the government. And he said, your job is to run the government, my job is to manage the politics. You don't worry about the politics unless you hear from me. You run the government the best way you know how. I thought that was pretty remarkable. People always ask, well how could you work for him because of A, B, or C, and it was because of that. I mean, this was a guy with a deep personal sense of commitment to right and wrong, and integrity, and a very formal guy.

22:30:43:02 - 22:33:18:12 Lisa: Boy, how do you live up to that second day of work?

Steve: Yeah, that was pretty amazing. And we were lucky. Again, people I think under-appreciate the caliber of a lot of the career staff and DPW, but it was Mel Knowlton and Dana Olsen again, and there was one other person involved who I forget. And we brought other people on board, and they said hey, there's this consultant, and her name's Barbara Smith. She's head of the part time Division for Early Childhood at the Council for Exceptional Children in Washington. She lives in Pittsburgh because she just got married and her husband's there, and we want to employ her part-time to help. And we had this inter-agency coordinating council, and I remember once Ron Cowell was the legislator who -- he's no longer a legislator, but around the Pittsburgh area, and he was the chair of the House Education Committee, and he was on -- so we had a barbecue at my house, we lived in Mechanicsburg, and we were all sitting around drinking beer and hot dogs and hamburgers and talking of this council about how to make early intervention a reality. And then I went to a national DEC meeting in I think Minneapolis that second year, and all these -- we got to testify this sort of mock hearing about it, and all these people were talking about the fights and the turf issues and the challenges they had in their council, and we were talking about having a barbecue and trying to figure stuff out, because we all decided we're going to make this work. And I actually saw Barbara this summer, and she said, you know, it's still pretty remarkable thing. Few other states did that, because we said, there are kids at stake here. And this goes back to the governor, the governor was pro-life, very much, he was a very religious man, and to him, pro-life meant you support families and kids. That was his interpretation of his faith. So we were trying to do the right thing, and there were issues, anytime you ramp up a program, but I was in the House chamber, sitting in the gallery when the law -- it was called Act 212 -- was debated. And I remember Representative Cowl, who's still someone I'm in contact with, sort of got up and talked about this. There was one question, and it passed unanimously, and then it passed the senate like he had done his work, his political work, and the governor's office was behind it at that point. And so it was a pretty good feeling. Then you've got to implement what the law says, but again, to say to families, from the time your child is born, you can now get support, that your state is going to say your kid's important, and we're going to help you figure out what's best for this kid, and that's a pretty good feeling.

22:33:18:23 - 22:34:24:05 Lisa: You said earlier you got into social work because you wanted to take on 'the man' -- essentially you were the man.

Steve: Yeah, wasn't that interesting? I never felt like the man, but yeah, I sure was.

Lisa: Do you think you're part of a new way to be 'the man'?

Steve: Yeah, I've been working lately on some stuff about what does it mean to be a professional in a person-centered, self-directed world, and I think we've taken the training many of us had in the '60s, '70s, and '80s and turned it on its head. It used to be we're going to take a look at you, we're going to figure out what's wrong, we're going to develop a program to fix it, to make you better. That was the approach, and I think the approach now is tell us what you want and need, okay. We'll help you figure that out, and then figure out how to get that. I think it's actually a higher order skill set to do that, and to help people differentiate between wants and needs, because there's still a lot of confusion around that. I mean, I need a reliable way to get to work. I want a Porsche. That's sort of the difference between those, but I think professionally, it's much more satisfying than just trying to fix people.