Chapter 2: Work with PARC

6:17:28:12 - 6:22:12:20

Q: You did go on to become the Associate Director of PARC [Pennsylvania Association of Retarded Citizens], the state organization in 1965 I believe?

A: That's correct.

Q: Okay. And two years later you did leave the church, your ministry, to focus of your work with PARC. And I'm wondering why you did that?

A: Well I had been involved in the state association. Now the Pennsylvania ARC was, gaining momentum, had very good parental leadership in the organization. Some upstanding people who demonstrated their leadership, and because of that, and going to state conferences and uh, meetings with executive directors, it got more orientation to the broader field, at least in Pennsylvania, but then there were the national ARC were also holding conventions and conferences uh, where we had involvement, I had involvement at that time, as well. The Bucks County Association was rolling and developing, and because of those activities, the state executive director was a gentleman by the name of Francis X. Lynch who subsequently became the director of the Developmental Disabilities Program in Washington. Uh, under the Johnson administration, I believe. Um, the-- he had requested if I would come on with him to help direct the state ARC, and uh, the need to expand and develop the state organization at that time. So two things were going on. One was the major effort coming out of the Eisenhower administration. The studies on mental health, mental retardation nationally, which focused on community needs and also focused on the need for state by state legislation to set up network services. And so that was into the 1965-66 period when the state of Pennsylvania adopted its legislation for the Mental Health/Mental Retardation Act, and developed the network services of county based Philadelphia, Montgomery, Delaware, Bucks, Chester, and across the state. Uh, some were combinations of counties, but by the most part were county by county MH/MR service directors and staff. Uh, so that was the beginning of a much more extensive period. And that period was, of course, formative, beginning. And that's developed since then. Since that was 40 years ago. A lot has happened since then. Some good, some not so good. And of course people dealing with budgets today and uh, federal and state budgets are concerned about cutbacks in services at this point. But what we have today is so far ahead of what we had 40 years ago, that uh, maybe it's not bad for people to realize the privilege of having services and that it's not just a right, per se. Um, and in that timeframe of '65-'67, there was a two year period that I was at the state association. I had also taken an interim pastorate in Camp Hill, Pennsylvania, and helped that church get further established while I did the state association work. And the second, important area was the development of uh, county chapters and during that two year period, we established approximately 20 new chapters county by county. And the methodology there was to go in the counties to find um, where there might be known individuals who had disabilities and find the parents and to interact with the special education people and to try to put together a local chapter that way. And we were fairly successful in that some prospered, significantly, and others were slow in the development, but it was a period of significant growth for the PARC.

6:22:12:20 - 6:23:36:07

Q: You talked about the influx of legislation, sort of in the late '60s, mid to late '60s. Um, was the ARC involved in the development of that legislation or the implementation of that legislation?

A: Oh yes. Francis Lynch as a spokesperson for the PARC, was very much involved with the legislators. I had some of that interaction as well. And of course, the parents were integrated into that effort of development of the legislation and its appropriateness and so on. There was always that tension between mental health and mental retardation, the psychiatric community and the developmental community, as to what was most important. It was on the prestige of the psychiatric level of professionals versus the mundane pedestrian type of people in the community. But the stronger, proved to be stronger, were the advocates, and became the envy of the mental health field when the activities um, brought many, many services to the mentally retarded, and of course some of the highlights which we'll discuss are the right to education and then the institutionalization.

6:23:36:07 - 6:25:15:20

Q: I'm curious as to why at this particular time in our history there was this influx of legislation. We know of course we had a Civil Rights movement, other Rights Consciousness Movements, a president who had a family member with an intellectual disability. Did any of these or other um, other issues sort of point the field to this direction?

A: Sure. First of all, and the reason I mentioned the Eisenhower administration, it was a post war period and there were a lot of disabled people, just as there are today, who were, not so much demanding services but the needs were quite evident. And uh, I think Eisenhower having been a major voice in the conflicts of Europe and so on, uh, had a significant identity with the Veteran Movement. And that helped push that need for comprehensive mental health and mental retardation services. It was kind of a mental health movement, mental retardation piggy backing on it at that initial stage, but I think that MR and Developmental Disabilities has gained a great position over the years.

6:25:15:20 - 6:26:14:18

A: the Kennedy family, of course, had a great deal of interest in the field of mental retardation. Um, with their daughter, Rosemary, the senior, Joseph Kennedy, and Rose Kennedy, their daughter, Rosemary, and being sister to John Kennedy and Robert and the rest of the family, they had a significant interest in that field. Um, I think that's all I'll say about that but, in 1963 because of their interest and so on, there was a strong push by the National Association for Retarded Citizens and all of its affiliates in the maternal health field. And the passage of that legislation took place in 1963. I happened to be in Washington at that time when the signing of that bill, which was kind of exciting at that time.

6:26:14:18 - 6:28:32:01

Q: You had mentioned that as the ARC was growing in Pennsylvania, and you were adding additional chapters, as many as 20 additional chapters around the state, um, that we saw the emergence of parents and parent leaders, um, which I think is so interesting. Such an interesting part of our history. I'm wondering if you can remember or um, share any recollections you might have of some of those early parent leaders.

A: Uh, certainly, uh, it was an emerging period in the '60s for the ARC. Uh, during that period, Pennsylvania ARC grew to about 25 thousand individual members of the organization, which is significant for an organization. And nationally they grew to about 350 thousand members. So that as strong active advocates, became a significant movement at that time. Again, I would say I think it's lost a lot of that impact in more recent years. Not that, not that the organization nationwide and state by state haven't maintained strengths and influence. But I think it was much stronger back in that time frame, because it was pioneering work. People knew they had to pay a price and they did. Gave innumerable hours to the field in volunteer services and meetings and focus, and came out with significant actions. We say that the '60s were the, were the decade of legislation, and the '70s were the decade of litigation. It was that kind of progression, which makes sense. Once you have laws that define what services should be, uh, or shall be in the language of legal, uh, then you have some basis to say I'm not being given what I should be given and there were then the subsequent actions.

6:28:32:01 - 6:30:50:15

Q: I think...back when parents began to assume leaderships roles, um, I think they probably weren't always in agreement about how to best support children. I'm assuming some members of ARCs had children who were in institutions. Some had children who were at home. I wonder if you can tell me about some of the types of conversations the parents were having and if they were able to resolve those very different points of view and perspectives.

A: Yeah, I think the dichotomy or the conflict came more in the litigation period in seeking to bring down in size the institutions at least, if not to eliminate them. And there you had, uh, parents who had had their children in institutional care for many years. Or others had made recent decisions, but they made a decision and it wasn't an easy decision. And so to have a suggestion that once they thought their problem was at least semi resolved, uh, it became a hardened issue to deal with that somebody was suggesting that now we're going to bring down that institution. So I think it's just natural to understand that, that dynamic that develops in that atmosphere. And some of it became negative interaction, but I think on the most part, it became positive in the sense of outcomes, compromise, understanding, uh and seeing the evidence of what can be done. Uh, it wasn't always a good experience when you had the developmental community facility move somebody from an institution and then that, then you had an expose about that particular facility as to uh, abuse, uh, inadequate care, lack of nutrition, starvation, those weren't very happy terms, and those weren't very happy experiences in that period. So, so you can see why there was conflict and uh, and not necessarily full agreement on the direction that things were going.

6:30:50:15 - 6:33:05:01

Q: Um, you had mentioned, um, that you had visited Pennhurst in the sort of early days of your career. I believe it was at the request of one of the parent advocates, Dennis Haggerty that you had -

A: Yes. Dennis was, of course, affiliated with the Delaware County ARC and uh, and uh, so we got to know Dennis early. And then when focus began to, I had an early visit with Pennhurst just out of interest, to see what institution life was. Later, of course, we had a lot more interaction with those who were concerned with what was happening in the institution, or the lack thereof. And again, you know, that wasn't a challenge to people being inhumane; it was the issue of an institution is an institution is an institution. That you get into a setting where people are on staff and they give eight hours and it's an overwhelming experience so that you don't necessarily, some maintain high levels of enthusiasm, and compassion and so on. Others it was a mundane of going and getting your eight hours over, because the overwhelming nature, not necessarily contributing to good and positive services. So that became, again, an issue that doesn't satisfy parents. That it's just a matter of care taking in the very minimal fashion. Uh, you know, as some professional had said, one gentleman who came over from the Netherlands said, "Our cattle get better attention than your people do in institutions." That was a pretty, that was a pretty sharp contrast and challenge to us as to what was happening to some people in the institutions. Again, you can't make general, broad categories over everything or everybody. But there were things going on that were very disturbing.

:33:05:01 - 6:35:26:22

Q: When you completed your tenure as the associate director of PARC, you went back to the Montgomery County ARC where you served as the executive director, I believe.

A: Right.

Q: Um, would it be fair to say that at the time that you served as executive director, that Pennhurst and the conditions in institutions were the focus of that chapter?

A: Uh, I would say that, that it was a, Montgomery County ARC, it's as we know, Montgomery County is one of the wealthiest counties in the Commonwealth of Pennsylvania, and being a bedroom community of Philadelphia, had a lot of professional people in its ranks, and uh, as we know, disabilities are no respecter of persons and so that you have the cross section of people affected by disabilities within their family. Unfortunately, a dwindling number of people step forward from all ranks to join together and to be concerned about the community programs as well as the uh, institutional issues. The institutional issues began to grow as we went through the '60s, uh, and kind of um, drew attention of more people. Certainly the Montgomery County ARC was concerned enough that when we uh, I think the parents suggested, not so much their executives suggestion, but their suggestion was that we hire a social worker who be kind of interloper between the institution and the agency uh, to uh, identify what the issues might be and how they might be addressed. It was about that time that of course, Dennis [Haggerty] and others were involved and the legal community was sniffing around as well at that point. And the development of a strategy to deal with, with Pennhurst and in approximately 1969 at the state convention held in Pittsburg, uh, a resolution was adopted to actively pursue litigation on what to do with the institution or to seek to close them at that point.

6:35:26:22 - 6:36:39:18

Q: You were talking earlier about how difficult it was for parents to make a decision to send their children to institutions, which of course it was, it could ever be an easy decision. Um, and yet, there were other members, other parents who were working to close Pennhurst and transition residents into the community. What was the atmosphere around the ARCs at that time, particularly the meeting where the resolution to move forward with institutional closure came about?

A: I think, I think at that time, there were very solid citizens so that it wasn't hard fast that this was, you know, it was to develop and strategy in relationship to the institutions. Um, but there was a strong sentiment amongst a number of people that we needed to have at least much smaller institutions or alternatives to the institutions. So that was laid out there as the points of discussion certainly. But that it should be examined from a legal standpoint and that we should engage legal counsel to aid and assist in the, the determination of what that direction might be.