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.
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.
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 selfdetermination 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.
Chapter Three: Growing Self-Advocacy Movement and Roland Johnson
21:57:00:24 – 21:58:46:24
Lisa: Certainly, thinking of what people want and need makes me think of the growing selfadvocacy movement in Philadelphia, particularly during your time here.
Certainly the efforts of Speaking For Ourselves were pretty extraordinary during this time, and I
know that you got to know one self advocate particularly well named Roland Johnson, and I
wondered if you could tell me a little about him, maybe describe him for me.
Steve: Yeah, Roland was I think a transformational figure.
I think Philadelphia was the first public entity in the United States to fund self advocacy.
I mean, we contracted through I think Temple to give Speaking For Ourselves money to monitor
people and institutions, and that was in 1984, so before the movement was certainly what it is
today.
And Roland was this guy who had the ability to sort of communicate at your gut.
He didn’t talk about himself very much, he talked about people with disabilities and people who
were suffering.
He had very good support from a guy named Mark Friedman, who knew the balance between
supporting and nurturing and controlling, and Mark did not control.
He allowed people to do -- to speak their mind and speak their voice.
They were a growing influence.
You know, there were many people who were very skeptical.
Well, these people are retarded, which was the term at the time, how can they possibly -- and
some of the people opposed to the institutionalization, some of the people from Voice of the
Retarded and those different groups, were just dismissive of them.
And I think Roland showed us that people with an intellectual disability could lead, and could
lead without being someone pulling their strings, could lead from the heart, and could again
articulate in a very clear way why things had to change.
21:58:47:05 – 22:00:28:07
Lisa: Do you remember the first time you met him?
Steve: No, I remember the last time I met him, I mean the last time I saw him.
He came to my office with Mark, and he was diagnosed HIV positive, and he came -- he wanted
to tell me in person, and we had this whole conversation, and I think that was probably the last
time I saw him.
I think one of the -- I do remember -- my son is 25 years old, and I remember sitting at what was
the Marriott on City Avenue, but it was technically in Montgomery County, and there was a
Speaking For Ourselves conference, and there were 400 or 500 people in the audience, and I
was speaking with Bob Perske, and then I was going to leave that conference and go pick up my
wife and son at the hospital.
My son had just been born, and bring them home, and I couldn’t miss the conference, so they
literally postponed bringing them home from the morning to the afternoon -- yeah, that was an
interesting time.
But I showed up in -- it was a Saturday morning, so I was wearing a pair of khakis and a sports
shirt, and I think I had a sports jacket on, and because there was going to be a dance that
afternoon, the people in the audience were dressed to the nines, and I remember leaning over - and Roland was on the dais with us -- and I remember leaning over to Bob Perske and saying,
you know, I bet you half the people in the audience here have a behavior plan.
And people were sitting, paying attention.
I had spoken at many professional conferences, and the audience was sort of better behaved
than they were at an AAMR -- I think it was AAMD at the time conference, so --
22:00:30:20 – 22:01:08:02
Lisa: What was your personal relationship like with Roland?
Steve: I think we were friends.
There are other people who are much closer to him than I, but I liked the guy.
He was just a fascinating man, and he sort of emblazoned in my brain that we were working for
him, and for people like him.
He had that ability -- again, because he almost never talked about himself.
There are many people who are leaders of movements who are very self-centered, not just selfadvocates, and Roland was not self-centered.
I think he was very outwardly focused on what could be called his constituents; he really felt for
the people.
Chapter Four: Accomplishments as Director of Mental Retardation Services in Philadelphia
22:01:10:14 – 22:03:12:09
Lisa: So while you were Director of Mental Retardation Services, do you think you could point to
one thing that you felt that you accomplished, that you feel was significant or that you feel
particularly proud of?
Steve: I think we turned the tide in Philadelphia to say it can be done.
I think the attitude went from these people can’t all live in the community to we can do that, we
just now have to figure it out.
And my sense was, I started to get -- the reason I went to Philadelphia -- I had been the director
of a provider agency, and very interested in public policy, and realized to work in public policy,
you either pretty much had to be in academia or in government.
So I went to Philadelphia for the government part of it, and I wanted to show government can
do this -- not perfectly, certainly, and not without drama, but -- so I think when I left, Pennhurst
was almost closed, and I think there was no doubt that we would get everyone out from
Philadelphia, and the question was, what comes next from there.
But I was also lucky.
I started to get some national exposure, Richard Surles was the county administration who I
worked for, and he was really supportive of me doing stuff statewide and nationally, so I got to
start talking about things statewide in Pennsylvania, and then at some national forums with
Richard’s support, and it allowed me to say, hey, there’s a bigger playing field here, and I can
compete -- personally, I can compete on that field with ideas, and hopefully with some skills,
and I remember being at a meeting of county administrators, and they were all sort of joking,
well you’re not really one of us, because Richard’s the county administrator, and he’s not here
and you’re here, and my response was, yeah but my little program is bigger than any of your
other programs, and here’s what we’ve done, what have you done lately?
So that was to me personally gratifying, I think professionally satisfying, to sort of say, okay, we
can do this, Philadelphia can do this.
We’re not going to always be seen as that place that’s lagging behind.
22:03:13:04 – 22:04:10:05
Lisa: Was there something that you had hoped to accomplish during your time there that you
felt that you didn’t, or weren’t able to?
Steve: I would have liked Pennhurst to be closed before I left Philadelphia.
I think I would have felt badly had I not gone to state government.
That wouldn’t be a part of that, and I would have liked to have figured out a way to deal with
something I know they’re still struggling with, which all these people in sheltered workshops do,
and sort of menial stuff, half of them bored out of their minds, and how do you address that?
And there was actually I think more pressure, pushback on that issue, and Philadelphia is a very
neighborhood and community place.
Most of the provider organizations -- some of them were called base service units, I believe,
were run by community members, and they were very proud of those places, and they didn’t
see that those places were sort of like the institution, only people didn’t live there.
So we didn’t get very far on that.
We tried some things, but didn’t get very far.
22:04:10:20 – 22:05:55:12
Lisa: There’s still plenty of workshops, even despite people with disabilities saying over and over
again that employment is a priority for them.
So what do you think it will take to get rid of them?
Steve: I’m not sure what it will take.
I have been struggling with that for a very long time.
Part of it might be a change in the labor laws.
Some people are trying to change the Fair Labor Standards Act, so that those programs called
14C, which is a section of the act that allows people to pay people sub-minimum wages, and
there were some efforts that were unsuccessful, to get rid of that 14C exemption, or phase it
out over a five-year period.
And the challenges -- there’s then what do you do?
Lots of people can get out and get jobs, and we know how to support them.
There are lots of other people who somewhere you might find someone like them supported in
the community, but how do we, one community, do that?
So I think it would take something that radical, and a phase-out period which you, just like in
closing the institutions -- what happens to somebody who’s making 50 cents a week, who all of
a sudden we haven’t figured out how to get them a job, or something meaningful in the
community.
Then what?
Do they sit in a day program all day long and do puzzles or coloring books?
Is 50 cents a week and doing something that leads to economic production better than doing
coloring books and puzzles all day long?
Even those people with 50 cent paychecks wave them up and are proud at least they’ve
accomplished something.
So there’s a big conference in Washington next month, it’s almost November.
The Alliance for Full Participation wants to double the number in community-based employment
in a five-year period, and I think that’s another step, but it’s going to take sustained leadership
at the state and national levels for two decades. I mean, it’s a 20 year problem, it’s not a fiveyear problem.
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.
Chapter Six: Accomplishments as Deputy Secretary for Mental Retardation for PA
22:34:25:11 – 22:35:33:04
Lisa: So again, you were six years as Deputy Secretary.
Was there a particular moment, or anything in particular that you are proudest of?
Steve: I think the thing I remember the most fondly was when Larry Pace and Nancy Thaler sort
of came into my office and they showed me the draft copy of Everyday Lives -- full color, you
know, mocked up, ready to go, and I thought wow, this is real, and the governor’s office had
signed off on it.
And to me, that was the most amazing thing, that you could get something like this, some vision,
out of government.
I mean, this was a government document, you know.
It said Robert P. Casey, Governor, Commonwealth of Pennsylvania on the document.
And so that was a pretty proud moment.
It was like, okay, we can now take these ideas and start to put them into action, and use them as
the basis for going forward.
So then the day Pennhurst was finally closed, the day the last person left, the day Act 212 was
signed into law by the governor, I mean those things were pretty exciting times.
22:35:35:00 – 22:37:07:10
Lisa: Anything that you had really hoped to accomplish, that you felt was left on the table?
Steve: Oh sure, I mean, first of all Western Center was a nightmare, and getting that place
closed, we started on my watch, we put somebody in undercover, we arrested -- bunch of
people got arrested, 22 people got fired in one day, but sort of making that happen, getting
Embreeville closed, making that happen -- I mean, we started all that stuff but it certainly didn’t
finish.
I remember one meeting in Embreeville with all the families, and saying we can’t fix this place.
I’m looking people in the eye, and the advocates wanted to come to the meeting.
We literally locked them out of the meeting.
I remember locking Judy Gran and Ilene Shane I think it was, out of the room, and this was also
with the families, and the families being passionate about things.
I had a second phone line at home and offered them my home number.
I remember sitting in people’s living rooms, from Embreeville, talking about that it was very
different than Pennhurst.
It was a different kind of challenging.
It wasn’t as contentious.
It didn’t involve as much litigation, and it was done under a much more planful way.
Some very good people who had worked, I believe, at Selingsgrove or Laurelton came to help,
and helped people transition to the community.
So a very different way of doing things, but it also made me realize, government can be a force
to try to do the right thing, and you can stand up to people who are trying to bully you, and
some of the advocates were bullies, at times.
22:37:08:08 – 22:37:45:06
Lisa: Do you think the more planful way that those institutions were closed was a result of all of
the angst around the Pennhurst culture?
Steve: Oh, I think so.
I think we learned things.
Again, closing Pennhurst for better or for worse taught people things, and Embreeville was done
in a much better way, much more person-centered planning and a lot more choice.
Western Center was perhaps more contentious than Pennhurst, didn’t get the press coverage,
but had some really ugly things, some families who were just doing some very ugly things -public statements, sabotage, lying to people.
It was hard, and I think again, Nancy Thaler bore the brunt of that, not me.
22:37:46:26 – 22:39:25:01
Lisa: So would you consider yourself, Steve, a leader in this movement, at least in this state?
Steve: I think part of it, yeah.
I mean part of it by positional authority, you’re the person in the job whose name is on the
regulation from the license, and I’ve done other things that I think are leadership-like over time.
I don’t think I could have done those had I not done the stage out in Pennsylvania.
And it’s funny, when we moved to Philadelphia, my wife and I were trying to figure out, well
where do we want to live?
We knew we didn’t want to stay in Ohio, that was a temporary thing.
Stayed there a little less than five years, and the idea behind Philadelphia was, well, it’s big
enough and diverse enough that you can sort of stay there the rest of your career.
That was the idea.
And I was born in Philadelphia, there was some sort of draw and pull there.
Well that didn’t happen, and moving to Harrisburg, just I commuted for awhile and my kids were
little.
It was not a good thing, and then leaving Harrisburg was a hard decision, but basically a family
decision.
I wanted to move somewhere where I didn’t have to move my kids again.
My daughter was in fourth or fifth grade, my son was in kindergarten or first grade, so I wanted
them to be in a place where they could grow up with sort of stability about school and friends
and things, and I knew I couldn’t stay in Harrisburg and do that, knew I wouldn’t be reappointed,
that there was some chance.
I had met with Congressman Ridge, who was sort of talking about frontrunner, running for
governor, but certainly did not have a commitment from him that I had support from people in
the area with him, but I just didn’t want to be unemployed in Harrisburg, Pennsylvania.
And I was interested in policy until the next logical step was to go to Washington.
Chapter 7: Kennedy Foundation, National ARC and International Work
22:39:25:27 – 22:41:04:28
Lisa: What was your next step after being Deputy Secretary?
Steve: I got -- again, a headhunter, one of those headhunter calls just at the right time, and I was
the Executive Director of the Kennedy Foundation.
I actually still hold that title.
I only do it a couple days a month.
You know Eunice Shriver was sort of the force behind that.
She’s died two years ago, two and a half years ago, and Senator Kennedy’s died.
I was actually just there this week, so that gave me a chance -- that was a tough job as well.
I think I was there almost five years longer than anybody else in the history of the foundation,
but again, a person who was an ethical force of nature, and I learned more from her about
politics in Washington than I could have learned in several graduate degrees, and she was part
of permanent Washington, and respected by both sides of the aisle on the Hill.
And so that sort of taught me about that, and The ARC sort of followed after that, and that was
a chance to do things both in Washington and nationally that was pretty exciting.
And that was a job of changing an organization somewhat.
Now similar to Everyday Lives, how do you get an organization focused that I think had gone
adrift?
Lots of really good people, but was adrift, and was in Arlington, Texas, which -- I lived there for a
year.
I commuted for a year from Washington to Arlington, and finally got it moved, and now it’s
finally all together in Washington, D.C., all the public policy people, the office staff are all in one
place, on K street in Washington.
But that moved in 1999 in December, and it took 12 years to accomplish that.
22:41:05:21 – 22:44:27:18
Lisa: Seems like it’s in its rightful place.
Steve: I think it is. I think they’re doing good work and promising work and expansive work, and
so -- and along the way I left the The ARC and became president of AAIDD.
I had been a member since I was a graduate student. My first day as a graduate student at
Kennedy Institute, they handed me an AAID -- then it was called AAIDD -- brochure, and said you
should join this as a student, and a copy of the original President’s Panel on Mental Retardation
Report, and said you should read this, and I’m trying to remember the third thing.
The President’s Panel thing was called the National Action to Combat Mental Retardation.
That was the language at the time, you know, from the original President’s Panel, and the third
thing was the normalization book that had just come out, and they said, read this, and it
certainly changed my conception.
I mean, I knew a little bit about disability from policy classes I had taken, but I mean a smidgeon,
and it’s wow, there’s a whole world out here, and the world is changing, and then after my
internship, they said we’ve got this federal grant to work on deinstitutionalization, to get people
out of a place called Rosewood, which is now closed, outside of Baltimore, and I actually had
been there in high school, as a delivery boy for a drugstore that my father owned, and we used
to deliver things to that institution, the staff that lived on the grounds.
So all of that sort of came full circle, and the next thing for me has always sort of been there
when I was ready, this position at the university came about, and I always thought I wanted to
be a college professor but knew that it couldn’t just be a regular thing, and the University of
Delaware has this wonderful system for people who do public service, that you look at and
evaluated differently than people who do pure research, and so I’m a full professor with an
endowed chair, which comes with all sorts of benefits, in a place that’s very supportive, and I
love working with students.
It’s a whole thing that I never thought I would like, and I teach an undergraduate class that is
about families and public policy, not just disability, and I do that on purpose because I work
disability and aging issues into it because I think it’s important for students to know that.
And then I teach a graduate class.
And then we started -- really decided to leave The ARC when -- it was in a meeting, when we did
the first Alliance for Full Participation.
We’re all sitting around one day trying to plan that, and it was somebody’s birthday, I think
Doreen Croser, who was in AAMR then, and realized that I was the youngest person in the room.
I said oh, this isn’t good, and started doing some research on what was happening in the
nonprofit world and the government and realized leadership’s about to change, pretty
dramatically over the next decade.
And then the thing in Delaware came up, and when I had my interview, I said I want to do this
leadership development stuff, and so started this leadership consortium thing, just based on
personal relationships, and we’re about to have the 14th leadership class come in, in January,
and Nancy Weiss came from Tash to help us do it, and it’s been fascinating.
And then some international stuff took off from there, and I could probably be out of the
country for two weeks every month from now on, but that’s not how I want to live my life, so --
22:44:51:28 - 22:46:01:12
Lisa: You’re working with emerging leaders, at Delaware Leadership Institute, and you’ve
worked with very established leaders.
You talked about (inaudible) Kennedy really taking you and teaching you about policy, I mean in
government.
So what is it that you think makes someone a leader?
Steve:I think it’s a combination of having a vision, understanding what the field is, and then
doing something about that vision.
It’s not just saying this is what should be, but then taking action to do something about that, and
there are lots of different ways to take action.
Some people do it through law, legal means, some people do it through research and
disseminating research.
Some people do it by changing practice, some people do it by state government, and then local
governments.
There are lots of different places to exercise leadership, but it’s really about I think having a
vision, communicating that vision, and then doing something about it, motivating others to act,
and not just acting by yourself.
Because you can’t really be a leader without followers.
I think the quote is from Warren Bennis, who’s sort of a famous researcher.
He says, the only person who practices leadership by themselves is psychotic.
22:46:05:00 – 22:47:58:00
Lisa: Once again, I’m sure it’s getting annoying by now, but I’m going to quote you to you.
Steve: I want to know where you found all these -Lisa: Oh, I’ll tell you later, I’ll tell you.
I’ve been digging.
This was on a blog site, so this was fairly recent: Though we have so much that still needs
improving, with all the exciting new ideas and approaches that surface nearly daily, there’s calls
worldwide for hope and optimism, and yet here we are in Pennsylvania, facing some of the
largest cuts we’ve faced in many a time.
So why are you feeling so optimistic?
Steve: Well, if you read the words in the United Nations Convention on the Rights of People with
Disabilities, they’re pretty uplifting.
So here we have a world body.
We said this, over 100 countries have ratified it.
Not us, yet.
We’ve signed it but not ratified it.
I do a fair amount of stuff in Eastern Europe and I see people trying to get people out of
institutions -- very reminiscent of the States in the ‘70s and the ‘80s, and trying to support
families.
I was just in Colombia, and saw some things that disgusted me, and some things that were
incredibly wonderful.
Probably one of the best early childhood programs, inclusive programs, I’ve ever seen.
Families really struggling with, all right, how do we get our son and daughter as a young adult to
do something that means something to them?
The words around person-centered planning, self-determination, individualized control, are all
coming.
I wouldn’t confuse the situation in Pennsylvania, which is mismanagement and bad decisions, by
the prior administration, with lack of hope.
I mean, it’s a budget crisis and it’s going to harm some people.
There’s no question about it.
But that’s a management issue.
Nobody’s saying people -- nobody’s saying let’s change the law to say people with disabilities
should be reinstitutionalized.
Even if that happens to some people, I think that’ll be the intent, that’ll be a really unfortunate
byproduct of this bad policy decision and bad practice decision.
22:47:58:08 – 22:49:54:13
Lisa: What would you say to families and self advocates who find themselves faced with this
possibility?
Steve: Florence Kennedy was a civil rights advocate in the Martin Luther King era, and her sort of
famous saying was, don’t agonize, organize.
And I think they’ve got to be together and focused, and be all over the legislature, and say, look,
this was a mistake.
Somebody made mistakes, but don’t take it out on the people who are supposed to benefit
from the program.
Stabilize it somehow, and even if the program takes two or three years to stabilize and doesn’t
get new resources, cuts of the magnitude they’re talking about, people are going to die.
Horrible things are going to happen to some people, and I don’t think intentionally or
deliberately, but most nonprofits are fairly tightly leveraged.
I mean, some of them have got ample resources and have done that well, but it’s mostly fixed
assets like real estate.
They don’t have a lot of cash.
Some have -- people raised a lot of money in the community, but that doesn’t meant the
system’s not fragile.
If you look at how the system has grown over the last 25 years, every year for existing operating
-- the people in the retail industry have this concept called same store sales.
They go to your Gap and say, well last year this outlet sold X dollars, and this year it was X
dollars plus three percent, and if you look at programs that were started five or ten years ago in
Pennsylvania, they’ve gotten a one or a two percent increase every year in their budget, but
costs have gone up three or four or five percent, and so eventually that starts eating away, and
mostly eats away at staff issues -- what you pay staff, what you pay to train staff, the kinds of
people you can hire.
So the system’s a lot more fragile than I think people suspect, and what’s going to happen when
a provider goes bankrupt?
Who’s going to take over and support people?
You’re going to then have these mega providers, and you’ll be like the hospital field, where they
own six hospitals, and what happened to any one patient, even though their standards and
professional codes of conduct is less important than sort of the bottom line.
22:49:55:23 – 22:51:01:26
Lisa: Given everything that you’ve done professionally, to avoid those situations, what does it do
to you to see some of this coming full circle, some of these (inaudible)?
Steve: Someone sent me some of the stuff from Pennsylvania over the weekend and I lost sleep.
What’s going to happen -- said the order of magnitude’s $100 to $200 million.
One provider I talked to over the weekend, you know, had gotten a half a million dollar cut
already on a $40 million base.
That’s not a huge amount, but was looking at another three and a half million, which is a huge
amount.
Again, inflation may be low, but costs are still going up.
And so if you have declining revenue and increasing cost, there are only so many efficiencies you
can ride out.
You can ride out some the first year, but what happens the second year, if you have that lower
base?
So I think it’s up to government now to fix -- it doesn’t matter that it was the last guys in office
who made this mistake, it’s up to the guys now in office to fix it.
22:51:03:19 – 22:52:01:03
Lisa: Steve, thank you.
Is there anything that you’d like to talk about that we haven’t mentioned?
Steve: Interesting.
No, I don’t think so.
I mean, I think I’ve been lucky.
I’ve had the opportunity to work with interesting people and do interesting work, and I sort of
say that now to students: find something you love, and it may not be the first job you get or the
second, but find something you love, and try to do it as well as you can do it, and balance that
thing you love with the personal life, because (inaudible) that way as well, that without having a
stable and balanced personal life, you’ve got nothing.
So that’s it.