Chapter Two: Steve's Tenure as Director of Mental Retardation Services in Philadelphia

21:42:49:10 - 21:42:58:06 Lisa: So I think it's been -- your career's spanned almost 40 years at this point, working with people --

Steve: Yeah, boy, I don't know where the time went.

21:42:58:14 - 21:44:31:08 Lisa: So obviously there's so much that we could talk about in your career. I think today's interview we're going to focus on specifically on your years in Pennsylvania, starting with your ten year as director of Mental Retardation Services, for the city of Philadelphia where you spent four years, and I guess the first question I'll ask about that time is, when you came on board as the Director of Mental Retardation Services, what was the biggest issue facing you and your staff, do you think?

Steve: Oh, it was -- I mean, Pennhurst was front and center. There were lots of other issues, but I think the reason I got hired was that I said, yeah, you can close these places. We know how to do it, thinking back the way we did some things now, we'd never do it that way today, but it could be possible, and I think they were looking for somebody who could sort of motivate and energize people. And the city had a long history of not meeting court orders, of not doing what it was supposed to do under various decisions that went to the Supreme Court, the various settlement agreements. So I think that's why I got hired. I knew enough about -- done some work in Ohio on getting people out of a place called Apple Creek, so I knew enough about how you support people with significant disabilities in the community. But that was front and center. Certainly people -- adults living with their families -- was right behind that as an issue. But getting people out, just out, was really job number one.

21:44:32:00 - 21:45:40:20 Lisa: While you were in Philadelphia, Pennhurst wasn't closed right away, but people were transitioning from the institution to the community. Was the system ready to accommodate that kind of --

Steve: No, it used to be that the arguments we would have with the lawyers, both the city's lawyers and the plaintiff's lawyers, was how fast do you go, and some of the plaintiff's lawyers would argue, you go fast, and moving people builds capacity. It's a chicken and egg thing. We were looking at some things, I was looking at some things, saying we're just not ready to do this. Not that we can't, but we're not ready. Up until that point there had not been a lot of money spent on training and technical assistance of staff or providers. There were some people with very complex disabilities that I think died as a result of the system not being ready. People choked on hot dogs, choked on peanut butter, things they never should have had. But the other issue in Philadelphia with housing is that most housing in Philadelphia is older. There's very little accessible housing, and so finding accessible housing for people who had issues with getting around was challenging.

21:45:43:10 - 21:47:35:25 Lisa: What did you -- or how did you find ways to kind of make the expansion work? You were talking about it being problematic. I mean, what were some of the ways that you addressed that kind of expansion, some of the practical ways?

Steve: Well, I think part of it is we contracted with Temple and some other people to do training. We brought in some providers from other places who had some experience, and then a lot of brow-beating, a lot of saying, figure it out. We're paying you non-profit to do this work, figure out how to do it. And there were some who did, and then there were others who tried, but we were in a tight spot. The city knew that if we were held in contempt of court, that there would be fines, and I think it was David Ferleger -- I'm not sure which of the plaintiff's attorneys it was -- but they were asking for $1,000 a day per person who didn't leave the institution by a certain date. And we knew that we'd never get any more money. The city was putting up a lot more money than it was required under a state law to support people, mostly in what they called then private license facilities. And the city had an aging population, and of course the political view in Pennsylvania is Philadelphia is sort of that place there that sucks up money. So we knew if we didn't do it, there would be these huge fines, and then we'd never get more resources, and we had these huge waiting lists for people, and we needed resources for that. So it was a dilemma, and I think the decision was made to go forward, and we went forward as best we could, as best we knew how at the time, and it was exhausting. I mean, it was -- not just for the city staff, but for the providers, people worked their backsides off to try to figure things out, and again, mistakes were made, and it's a lot easier now, looking back, to go, oh my. One of my colleagues says anything that we were proud of 20 years ago, we can be ashamed of today, and I mean, some of the things we did --

21:47:37:02 - 21:48:20:05 Lisa: What did -- what did housing community tend to look like at that time, again, while you were still in the city? Steve: People lived with two or three other people. The zoning laws were such that if you lived with three or fewer people, you didn't need zoning. And Philadelphia is a city of neighborhoods, and there are always these groups that would spring up -- citizens for, or citizens against -- these noble sounding names, who didn't want those people in their neighborhood. So people were living in row houses, some in high rise buildings -- very few single family houses, because except in sort of far western Philadelphia, parts of the Far Northeast, a little bit in the Northeast, there really weren't very many single family houses. It was all row houses, duplexes, and small apartment buildings. 21:48:20:20 - 21:49:13:29 Lisa: So the idea of having three people in a group home was more a zoning issue, rather than a philosophical issue? Steve: I'm fairly certain that happened before I got there, but I think it was a zoning issue. I think people didn't want to fight the zoning, and three people's not a lot of people to live together, but if three people choose to live together, that's one thing. That's not how it happened. At least getting people out of the institutions, it was, oh she knows her, they sort of get along, so move them in together. Or here are two people in wheelchairs, let's find a third person in a wheelchair and rent a three bedroom apartment in a high rise. It was as far from person-centered as you could get, and there was a plan, and there was a transition plan, but it was not -- you know a lot about the people. People would go out to Pennhurst and providers, county case managers, and go out and meet people, but you spend an hour or two with someone, you read a big file you don't know them, you don't know them. 21:49:14:23 - 21:50:17:17 Lisa: Certainly some families were resisting (inaudible). Did you understand their concerns? Steve: Yeah, yeah, understand, sympathetic too, but too bad. I mean, there was a settlement agreement between the plaintiffs and the city and the state, and that dominated. So you can not like it, but it's public policy, and public policy - people didn't like school desegregation either, but it was the law of the land, and I think it was the same issue. It's that, okay, you don't have to like this. This is what we're doing. You can be part of it, you can participate, you can choose to take your son or daughter away from services and do it yourself, which almost no one can afford, or you can help us do it as well as we can. And there were incidents, and things happened, and if I were a family member, I'd be nervous too. Are the staff well enough trained? Is there enough oversight? Licensing doesn't mean very much. It's basically permission to do business, but it doesn't really assure safety or health or well being. 21:50:19:08 - 21:52:06:04 Lisa: Did you find that some people who had been residents in Pennhurst, or those institutions, were reluctant to leave? Steve: Sure. You spend your whole life in one place -- 20, 30, 40 years, it's all you know. For some people it was a horror, Pennhurst, and for other people, they had the freedom to roam the grounds, they had friends, they stopped in places and did things, and had small jobs. So -- town, you could walk to town if you were a person who had the kind of ability to walk and walk back. So it wasn't that hard for some people, and for other people, it was all they knew. You went there when you were eight years old, and were moving you out when you were 58 years old; what else do you know about the world? It's your known universe. I think it was hard on some people. I think the last person to leave Pennhurst, as I remember, put his satchel down in the administration building, walked around -- and he'd been there his whole life, to make sure that all the buildings were really empty, and then took his satchel and sort of walked up the hill -- the state had rented a house to one of the providers, and this man and another man went and lived in that house with staff, and the guy was a brittle diabetic, and he went into diabetic shock and had to be rushed to the hospital. So that was the traumatic change in his life, and was his life better once it all settled down? Probably, but was there a huge hold in him for things he missed? I betcha. I mean, we broke up relationships that were 20 and 30 years old because you were from one county, this other person's from another county. Sorry, you've got to go back to your county of origin, even though you haven't seen any family members for 20 years from that county. You have no connection other than you were born there, when you got placed in Pennhurst, that's where you were from. So it wasn't all roses, by any means. 21:52:10:11 - 21:53:58:06 Lisa: I wanted to kind of touch on something that you talked about earlier, which is your shared concern with some families that group homes weren't always in safe communities, or that people weren't always safe in community. Do you feel that that's still an issue today? I mean, housing is so complicated at the best of times, and people with disabilities don't tend to have a whole lot of expendable income for housing. I don't know if you feel that this is an ongoing problem. Steve: Well, if you read the priced out report, there's a report that comes out every year, that one of the foundations, and this group called the Technical Assistance Collaborative in Boston put out, and it's called Priced Out In, and then the year, and there's not one census track in the United States where a person on SSI, supplemental security income, can afford a one bedroom apartment. So housing is a huge issue. Many families liked that Pennhurst was out in the country. So it was safer, and all of a sudden you bring people into the neighborhood in the city, there's violence in the city, there's run-down neighborhoods, there was certainly huge racial overtones, both from African-American families and from Caucasian families, and then from the smattering of Hispanic families who were involved. So are people vulnerable in the community? People are vulnerable everywhere I think is the answer, and I think it's sort of like the old Cheers song. If you're in a place where everyone knows your name, you're safer than if you're in a place where you're isolated. But the perceptions of harm by families were real. They wanted to protect their sons and daughters, and I think out of love. I don't think it was any malicious intent of saying we've got to keep this institution open, but they were worried, they were worried. 21:53:58:13 - 21:55:52:14 Lisa: Was it difficult for you to do your work? I'm just very curious, knowing that those concerns were real, and yet being mandated -- Steve: Yeah, we were too busy to think about those things. I mean, it was -- for a two year period there, I think I was pretty much out every night during the week and sometimes on weekends, doing community meetings. The city had -- interesting position -- the lawyer said you can't negotiate with communities, because if you're negotiating about opening a group home, you're conspiring to violate the civil rights of the people moving into that group home. That was one position. Part of the city, the community development people, were you have to meet with neighborhoods, you have to meet with these neighborhood associations. And so the city had refused to do that for awhile. I started doing that, and was on TV. At one point I remember Mayor Goode was in his office about something, and he puts down the newspaper, and he says, you're in the paper more than I am. But he was a housing activist, and I think understood that this was in part a housing and a civil rights issue. So it was just so exhausting. We were hiring staff, because as the case loads expanded, needed more case managers. We were trying to get all these group homes open, working with providers, also doing other things besides Pennhurst, like early intervention and family support, and doing it in the backdrop of a city civil service that was pretty dysfunctional. I mean, you had some extraordinary and wonderful people working in the city office, and then you had some other people who could not be described as extraordinary and wonderful. So we were too busy. We were the hamster on the wheel, and you couldn't stop. And the goal was in sight, we knew what the goal was, was to get everybody from Philadelphia out of Pennhurst. And as we got farther down that path, as the other counties finished that work, there was even more pressure. Well, Bucks County did it, Montgomery County did it. Yeah, but they're very different places than Philadelphia, they're not urban environments.

Steve: People lived with two or three other people. The zoning laws were such that if you lived with three or fewer people, you didn't need zoning. And Philadelphia is a city of neighborhoods, and there are always these groups that would spring up -- citizens for, or citizens against -- these noble sounding names, who didn't want those people in their neighborhood. So people were living in row houses, some in high rise buildings -- very few single family houses, because except in sort of far western Philadelphia, parts of the Far Northeast, a little bit in the Northeast, there really weren't very many single family houses. It was all row houses, duplexes, and small apartment buildings.

21:48:20:20 - 21:49:13:29 Lisa: So the idea of having three people in a group home was more a zoning issue, rather than a philosophical issue?

Steve: I'm fairly certain that happened before I got there, but I think it was a zoning issue. I think people didn't want to fight the zoning, and three people's not a lot of people to live together, but if three people choose to live together, that's one thing. That's not how it happened. At least getting people out of the institutions, it was, oh she knows her, they sort of get along, so move them in together. Or here are two people in wheelchairs, let's find a third person in a wheelchair and rent a three bedroom apartment in a high rise. It was as far from person-centered as you could get, and there was a plan, and there was a transition plan, but it was not -- you know a lot about the people. People would go out to Pennhurst and providers, county case managers, and go out and meet people, but you spend an hour or two with someone, you read a big file you don't know them, you don't know them.

21:49:14:23 - 21:50:17:17 Lisa: Certainly some families were resisting (inaudible). Did you understand their concerns?

Steve: Yeah, yeah, understand, sympathetic too, but too bad. I mean, there was a settlement agreement between the plaintiffs and the city and the state, and that dominated. So you can not like it, but it's public policy, and public policy - people didn't like school desegregation either, but it was the law of the land, and I think it was the same issue. It's that, okay, you don't have to like this. This is what we're doing. You can be part of it, you can participate, you can choose to take your son or daughter away from services and do it yourself, which almost no one can afford, or you can help us do it as well as we can. And there were incidents, and things happened, and if I were a family member, I'd be nervous too. Are the staff well enough trained? Is there enough oversight? Licensing doesn't mean very much. It's basically permission to do business, but it doesn't really assure safety or health or well being.

21:50:19:08 - 21:52:06:04 Lisa: Did you find that some people who had been residents in Pennhurst, or those institutions, were reluctant to leave?

Steve: Sure. You spend your whole life in one place -- 20, 30, 40 years, it's all you know. For some people it was a horror, Pennhurst, and for other people, they had the freedom to roam the grounds, they had friends, they stopped in places and did things, and had small jobs. So -- town, you could walk to town if you were a person who had the kind of ability to walk and walk back. So it wasn't that hard for some people, and for other people, it was all they knew. You went there when you were eight years old, and were moving you out when you were 58 years old; what else do you know about the world? It's your known universe. I think it was hard on some people. I think the last person to leave Pennhurst, as I remember, put his satchel down in the administration building, walked around -- and he'd been there his whole life, to make sure that all the buildings were really empty, and then took his satchel and sort of walked up the hill -- the state had rented a house to one of the providers, and this man and another man went and lived in that house with staff, and the guy was a brittle diabetic, and he went into diabetic shock and had to be rushed to the hospital. So that was the traumatic change in his life, and was his life better once it all settled down? Probably, but was there a huge hold in him for things he missed? I betcha. I mean, we broke up relationships that were 20 and 30 years old because you were from one county, this other person's from another county. Sorry, you've got to go back to your county of origin, even though you haven't seen any family members for 20 years from that county. You have no connection other than you were born there, when you got placed in Pennhurst, that's where you were from. So it wasn't all roses, by any means.

21:52:10:11 - 21:53:58:06 Lisa: I wanted to kind of touch on something that you talked about earlier, which is your shared concern with some families that group homes weren't always in safe communities, or that people weren't always safe in community. Do you feel that that's still an issue today? I mean, housing is so complicated at the best of times, and people with disabilities don't tend to have a whole lot of expendable income for housing. I don't know if you feel that this is an ongoing problem.

Steve: Well, if you read the priced out report, there's a report that comes out every year, that one of the foundations, and this group called the Technical Assistance Collaborative in Boston put out, and it's called Priced Out In, and then the year, and there's not one census track in the United States where a person on SSI, supplemental security income, can afford a one bedroom apartment. So housing is a huge issue. Many families liked that Pennhurst was out in the country. So it was safer, and all of a sudden you bring people into the neighborhood in the city, there's violence in the city, there's run-down neighborhoods, there was certainly huge racial overtones, both from African-American families and from Caucasian families, and then from the smattering of Hispanic families who were involved. So are people vulnerable in the community? People are vulnerable everywhere I think is the answer, and I think it's sort of like the old Cheers song. If you're in a place where everyone knows your name, you're safer than if you're in a place where you're isolated. But the perceptions of harm by families were real. They wanted to protect their sons and daughters, and I think out of love. I don't think it was any malicious intent of saying we've got to keep this institution open, but they were worried, they were worried.

21:53:58:13 - 21:55:52:14 Lisa: Was it difficult for you to do your work? I'm just very curious, knowing that those concerns were real, and yet being mandated --

21:55:53:22 - 21:56:59:01 Lisa: I'm going to quote you to you.

Steve: Oh my.

Lisa: I think you were referring to governments, and you said once, they see disability and respond with buildings and programs, rather than seeing what people want and need. It's about political will combined with self and family advocacy, and professional practice to rid ourselves worldwide of them, of these programs.

Steve: Yeah, I think there's an edifice complex. We see groups of people -- and I think it comes from our background in education, the fields background. We see a group of people, we think program, and when we think program, we think building. And the switch to thinking about individual needs, and person-centered planning and self-determination and individual budgets is sort of logically opposed to this person program building thing. And I'd like to say we've shed ourselves as a field of that person program building thing, but we could get in the car now, and I could show you a person program building stuff five minutes from here, 15 minutes from here, so it's not gone yet, and it may take a long time for it to be gone.