Chapter 4: Right to Education Normalization; Systemic Change

00:00:00.27 - 00:05:05.11

INTERVIEWER: I'm really curious about this because so many families who kept their children at home, we've been talking about, there were really two options-- institutionalization or keep your child home without supports. So here a door opens with a right to education, a possibility. And literally, I think, children were emerging from the shadows in a way. How did you find them? How did the state find them? And how many children who weren't being served roughly were found?

ED GOLDMAN: Well, the Child Find, again, was scouring communities all throughout Pennsylvania to find children who would have been part of this named class of children who were denied access to public education. And there were thousands of families that were delighted to come forward. Now, parallel to this, one of my roles was what I called head 'em off at the pass, and an education was one of them, is to provide services to families so they would have other options then long-term institutional care. We had, by then, 10 to 11,000 people living in Pennsylvania's institutions. And here, overnight, I'm responsible for this. So two things. One is to change the rules and regulations that governed services to make them consistent with the principles of normalization and community services, and to then design a statewide system of community services that had never before existed. It included what was then group homes, supported living. It included support to families for whatever they needed. Everything from the likes of babysitting so that parents could get a break. All of this was new. And there was one area in the United States that was beginning to experiment with a community service system, and that was in Nebraska. It was called ENCOR, the Eastern Nebraska Community Organization for the Retarded. And in this four or five county area, they started to develop group homes and a system of services, lifelong system. So here I am trying to embark on the same thing, and I was fortunate to meet and know Wolf Wolfensberger through all of this. And I called him because I wanted someone who knew about creating a system of group homes, because there was no one else that I knew. And he recommended a young guy who was the ENCOR residential director or group home directory, whatever his title was named Mel Knowlton. And so I called, and sure enough, Mel accepted the position. And long after I was gone and finally retired, leading that service. And we had strategies. We had some money that we put aside. We decided that every one of the mental health, mental retardation county units would have a group home person whose job it was locally to develop organizations who would be interested in running them and to help them through the process that we were then developing on how to get funding to open up local group homes. And all the county MHMR administrators were not happy about this. Their feeling was, you got money, you give it to us, and we'll figure out how it's best use locally. And our answer was, well, you're not getting the money. So you either take it to do this or you don't get the money. So most of them took it. And we knew that if we helped hire these people and did all the training that their loyalties would be to what we were trying to create, rather than the local MHMR bureaucracy. And it surely worked. And there were some MHMR administrators, particularly in the more rural areas were very supportive, but in the big cities, less so because of the bureaucracy that they had already developed to run mental health and mental retardation programs. But that strategy really worked and we started the development of the first statewide community service system in the nation.

00:05:05.11 - 00:05:33.07

INTERVIEWER: So with that said, I'm going to ask you a little bit more about the sort of new system. And I wonder if you could talk a little bit about this-- I think it's amazing to me these conversations still happen-- what the parental response was. Some parents, I'm sure, were very excited by the possibilities that you're describing, and a system you're creating out of air, a new system.

ED GOLDMAN: The answer to that is yes and no.

00:05:33.07 - 00:11:34.46

INTERVIEWER: Yeah. Well, yeah. And some families were not. So with all of that, my question would be relatively straightforward. You're creating this new system, new opportunities for people to live, to work, to be educated, people with disabilities, children and adults. Talk to me a little bit about parents' reaction to all the new changes coming down the pipeline.

ED GOLDMAN: Well, the parents who were in the community-- who had their children still in the community obviously were welcoming this. But the 10 to 11,000 people in institutions were not happy about this in that they had made their beds, so to speak. They did what the professionals early on were telling them is to put your son or daughter brother or sister in an institution and get on with the rest of your life. Places like Pennhurst, for example, many of the families would visit, but where they visited was never the unit that their family member lived on. So they didn't really see-- they had a special unit where the person was brought on, say, a Sunday visiting that was spiffed up, so to speak, to make them look nice. And many of those families did not want this decision upended that they had made. And part of it is I understand. You're basically saying to these families that for many years had accepted the decision that they made to institutionalize a family member. And we're coming, these little whippersnappers, if you will, telling them about this new community system that will be much better. And asking them to trust the same community that provided nothing for them and caused them to make the decision took a leap of faith that many were not willing to make. And that is certainly understandable. So there was a large-- it was a statewide parents group of institutionalized family members who were very much opposed to ending institutional care. Now, part of it, for me, is my dilemma is initially, I'm responsible for the 10 institutions. People were living in horrible conditions, and yet, I'm faced with limited resources. If you fix, for example, if you put $20 million into Pennhurst, what you would wind up is better electrical wiring, better plumbing, and nothing much changed for the life of the people who lived there. And yet, we could not in good conscience forget about them. So we got Title 19 money-- it was a tail wagging the dog, federal Title 19 money allowed for medical care, if you will, for people in long-term care facilities. When I started this commission was 1971, and I, over time, visited all the institutions. That was before there was an administrative change in the welfare department, creating regional offices that then had the administrative responsibility over everything in their region with a mental health, mental retardation, children's services, or whatever. And the central office became policy making, legislative, liaison, and things like that. Which at the time, I was delighted because I wanted to put all my energies in creating a that had yet to exist, rather than getting caught up in the demands of institutional life. And I still remember the first month I was there, I would be getting census reports from the institutions, and they were listed as how many idiots, imbeciles, and morons were in residence. And I won't say what I was going to say, but it was horrible. And then I saw in each monthly report, elopements. I didn't know what that meant. I grew up in a time when elopement meant you ran away to get married. And I thought, is this what's happening in the institutions that residences are-- no. I learned that elopements was someone who left the grounds, who tried to, quote, get away. And what that would do is trigger local police and everyone else they could to find this person. So I innocently asked, well, what happens when you find them. Well, they're brought back. And then what happens to them? Well, they're literally punished. And I thought to myself, punished? You should have a party and celebrate that they wanted to leave even though they had nowhere to go. Think how scary that must have been for them. It was an interesting time. And here we are, here I am, initially, with responsibility figuring how do we make the lives of the people who are already in these places better without letting that be the tail that wags the dog of the new service system that we're trying to create. And it was a balance. And so when administratively I no longer had that responsibility, I have to admit, it was OK with me.