Visionary Voices
Interview with Steve Eidelman
October 26, 2011
Chapter One: Early Career
Lindsey: We’re recording.
21:36:58:08 – 21:37:19:10
Lisa: Okay, thanks. Just a little introduction before we start. My name is Lisa Sonneborn.
I’m conducting a video interview with Steve Eidelman, at his home in Newark, Delaware on October 26, 2011. Also present is our videographer, Lindsey Martin.
And Steve, do we have your permission to begin recording the interview?
Steve: You do.
21:37:19:20 – 21:37:43:28
Lisa: Thank you. The first question I wanted to ask, Steve, was if you knew anyone with a disability when you were growing up.
Steve: Yeah, I grew up in suburban Washington and there was in my elementary school class of kids, all of whom had Downs Syndrome, interestingly enough, in my elementary school, and then I have a first cousin with an intellectual disability. So he was obviously part of our lives.
21:37:45:23 – 21:38:56:04
Lisa: Was your cousin’s disability viewed as a natural part of your family’s experience, would you say?
Steve: I’m not so sure it was natural. He -- my aunt and uncle lived in Plymouth Meeting, Pennsylvania, and they were told, interestingly enough, to put him in Pennhurst when he was a little boy, and my uncle, who was a Holocaust survivor, said no way, that’s not happening to my son, and there’s a place outside of Philadelphia called the Institute for Advancement of Human Potential, that does something called patterning, and so they had a whole community of people coming in, doing exercises with him, things like that.
So he was just part of the family at that point, and I had an uncle who probably had an intellectual disability, but mostly he had a very significant speech impediment and so, again, he was always part of our family.
You knew there was something different, but it wasn’t bad different, it was just different, and again, my grandparents were first generation American, so of the generation where my uncle had a job, rode a bicycle, lived with my grandparents until they died.So again, part of the fabric, but I’m not sure I was cognizant of disability issues, per se.
21:38:57:05 – 21:39:22:19
Lisa: So having exposure to kids with disabilities in school, and having a cousin and an uncle with a disability, did that affect your decision to earn your MSW to become a social worker?
Steve: I don’t think so, no. That was -- it was the late ‘60s, early ‘70s, and how do you rally against the man, how do you rebel, and for me, that was rebellion.
21:39:22:24 – 21:41:44:06
Lisa: So what did you imagine your career would be?
Steve: Well, not what it’s been, that’s for sure. I was -- in graduate school, had to do a year’s internship, field placement, 30 hours a week, and I was really headed towards doing something in -- I was interested in transportation and housing, those two things, and the dean of the graduate school, who was this big guy, he was about 6’10, a guy named Dan Thurz, stopped me in the hallway one day, and he had this bosso profundo voice.
He said Eidelman, come here, and I said, oh my, what have I done now, and he said, do you have a field placement yet, and I said no, I’m sort of looking around. He said, well there’s this place over at Hopkins called the John F. Kennedy Institute, and they want somebody interested in policy and administration, and that’s what you’re interested in, right? I said, well, I’m not really sure. They do stuff with handicapped kids, that was the name of the place.I said, I don’t think so, and he said, and they’ll pay you $7,500 a year, and they’ll pay your tuition.
Damn, I’m interested.
So I went over and interviewed, and it sounded like the guy I interviewed with, two men and a woman, were fascinating, and one was a social work director, one was an assistant director, one was the administrator of the institute, and they had agreed if I came I could split my time, so I’d learn, and they said, and you have to make a five year moral commitment because this was a maternal and child health grant that paid for those fellowships. It was the UAPs before they were the UCEDDs.
They were actually called UAFs at that point, facilities, because the original facilities were built under the Hill Bunton Act. Literally, they built the buildings under the hospital portion of hospital construction.
So they said, and you have to make a five year moral commitment to the field. And I said, well what does that mean? Well you agree to work in the field for five years. You don’t have to sign anything. So I went there for a year, stayed for six, and then decided I really needed to run something, and so started applying for jobs where I could be the executive director of something, and sort of things went on from there.
It just becomes -- at some point, it becomes part of you.
It’s not just a job, it’s not just a career, it’s part of who you are.
And I got very interested in this whole deinstitutionalization idea, and after seeing some institutions, said we shouldn’t really treat people like this.
I don’t think it was any more elegant or complex than that, it just offended me the way people lived.
21:41:44:09 – 21:42:13:09
Lisa: And how were people living? Was there a tipping point, one moment, one experience --
Steve: No, I went to a place called Forest Iaven, which was the District of Columbia’s institution.
Physically it was in Laurel, Maryland, and walked in on a hot day, no air conditioning, holes in the screens, people living in a small room with four beds.
It stunk, and the smell was horrible.
People sort of -- it was just horrible, just isn’t right.
And that place is now closed.
21:42:14:07 - 21:42:48:15
Lisa: So in this early part of your career, what did services and supports look like for families of kids with intellectual or developmental disabilities?
Steve: There wasn’t much.
There was a little bit of respite care.
This was in Maryland, so there was a little bit of respite care.
There were some group homes, but they were big, ten, 12, 20 people.
And then there were the state institutions.
Maryland was not, I think, at the leading edge of what was going on there.
So when I left Maryland, I went to Ohio, which was one of the states that was doing a lot of leading edge work at the time, and it was close enough to the east coast that we could get back.
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.