Chapter 3: Creating Community Supports

08:32:22:23 - 08:35:37:15

Lisa: And in fact new superintendent at Polk, James Colombado...

Marsha: Joe Colombado.

Lisa: Joe Colombado! Thank you for correcting that. Stated one of his top priorities would be to move people to the community but as you mentioned earlier in 73 or 74 that the idea of supporting people in the community was relatively new in Pennsylvania. So I'm wondering was there any kind of system in place that would help support folks.

Marsha: The community support system was weak at best. There were of course community supports. For instance my local chapter of the ARC at one point had 26 what were called pre-schools but they weren't pre-schools. They were educational activity based programs. Mostly in church basements for all the children who had been rejected by their school districts and so they were created almost many cases adult day care instructional and programs. And so you had a smattering of community supports not really funded at that time or very poorly funded I should say with ninety percent state dollars, ten percent county funding based allocation funding. But remember I mean the supporting statute, the 1966 Mental Health/Mental Retardation Act. While it was signed into law at 1966, it took several years to even gear up, so we were really into 1969, 1970 until this little smattering of community supports were developing. Suddenly you have hundreds of people coming home from Polk and I've got to say the provider system was very, very tight. I was really proud to be a part of... these were younger professionals. We were all idealistic and believing that we could create a much, much, much better life and an inclusive life for all of these individuals coming home from institutions. It did have one effect that I look back on. We also had more families who had kept their sons and daughters at home. These individuals are now adults and need supports but there was certainly, initially, a prioritization given to the individuals coming home from Polk and I never really, reflectively, thought that was fair to families in the community which is why we talked later we created a settlement agreement with Western, the closing of Western Center. We negotiated and negotiated and negotiated to get a one for one match so that someone who was on a waiting list for community support still living with their family would get an equal opportunity to someone coming home from an institution.

08:35:37:23 - 08:37:05:25

Lisa: How did you initially identify the folks at Polk who would be the first to move to the community?

Marsha: At that time, frankly, it was folks who were considered to be higher functioning; individuals who could pass this little coin test. Although we did have also two facilities, in particular Rodems Developmental Center which was founded by the ARC, what is now the ARC of Greater Pittsburgh, and spun off. We were very concerned about folks who were medically fragile and these were some of the most vulnerable people living at Polk and so that facility concentrated on bringing home individuals with very, very significant disabilities and medical challenges. And Ferlin did somewhat the same so these facilities sort of specialized. In the case of C. Howard Marcy State Hospital, this was a state run intermediate unit. We were trying to prepare people as though they needed preparation but that's to say there were cooking classes, there were... a lot of skills related programming and our goal was to get people out after coming home from Polk anywhere from six to twelve months.

08:37:06:07 - 08:38:47:24

Lisa: The process seemed to have moved very quickly. I think by 1974 there were 650 or thereabout people with disabilities who made the move to community and I'm wondering how the community reacted to this influx of folks returning home.

Marsha: Now again some of them are going to larger facilities so you did not have a lot of community reaction but we also had individuals. And in a growing number of community service providers who were accepting people, locating homes, doing things pretty well actually in terms of compatibility. If two women were best friends at Polk, had lived on the same ward together forever, generally their families were living in certain part of the greater Pittsburgh community; that those individuals would be coming right into community supports. We did have resistance of course. We did not have the fair housing act in place at that time and sure you had some community resistance. Interestingly we also had a lot of providers still doing six and eight person homes and you could assimilate a lot more people more rapidly by doing larger homes. All of which, thank goodness now, people have much more individualized opportunities than they did then.

08:38:49:04 - 08:39:18:21

Lisa: In many ways it sounds as though you and your colleagues in a willing system, maybe not from scratch but close enough, I'm wondering who or what drove the work forward for you?

Marsha: Well because, particularly the ARC of greater Pittsburgh has always been an organization of progressive people. I mean I just love having been a part of it all of these years. When I say progressive, we would go out and visit, I remember doing a three-day trip.

08:39:37:02 - 08:40:06:29

Marsha: I remember going to Michigan with a group of our family advocates and we spent three days with folks from their state offices visiting homes. At that time that was considered to be the best practice in the country so we were by no way convinced that we knew what we were doing. So we went out and sought information and visited communities that were ahead of most of Pennsylvania at that time.

08:40:07:21 - 08:41:29:15

Lisa: Were their particular ideologies or ways of thinking about serving people with disabilities in the communities that were informing the work you and your colleagues were doing?

Marsha: Sure. Particularly the folks out of Syracuse University which still is, I believe, one of the most progressive thinking universities in terms of how much we don't yet know about how to best support people to live their real lives in their own communities, but we relied, of course, on the work of Wolf Wolfensburg and others and that as young professionals we relied on the guidance of things and people who were thinking much more openly and broadly than we were in Pennsylvania at that time. Also to become, to be a part this national movement because there were some great things going in all places; Nebraska for instance, Kansas at that time, and so there was, while we didn't have email, couldn't just rapidly ask a question and get immediate response. We were all in contact with each other and learning together what those best practices were and stretching our thinking about what could be.

08:41:29:29 - 08:43:25:11

Lisa: You mentioned the word "Movement". Even at that time were you aware or did you think of yourself as being part of a Movement?

Marsha: Absolutely, absolutely, and much of that was instilled in those of us who were fortunate enough to be a part of the ARC movement by the ARC of Pennsylvania; by the ARC of the United States. In which Pennsylvania was providing, as you know, very, very strong leadership. Not only at the state level but at the national level and I think that we were, as a young professional I had this opportunity to spend time at a convention with Eleanor Elkin and with Jim Wilson and Ray Broderick... I'm sorry Judge Broderick himself out in Reno, Nevada, and I remember having dinner with him twice and Elizabeth Boggs, who spent actually a considerable amount of time here in Pittsburgh. I don't know if anyone has shared that. When her husband was a professor at Carnegie Mellon University and so you had these icons, these people to whom I looked up and I was found that breakfast and dinner were the best times if I could get them away from the crowd and just wind them up. I had a beautiful opportunity young, my younger parts of my career to spend a great, great deal of time with Elizabeth Boggs. Elizabeth and I were the two ARC representatives on what was then the Accreditation Council [Council on Quality and Leadership Accreditation Council (CQLAC)] and so four times a year we would spend two and three days together and I used to just meet her for breakfast and ask questions and just have the opportunity to be around some very, very enlightened people. It was a great opportunity.