Chapter 1: Background

08:08:30:28 - 08:09:09:20

Lisa: My name is Lisa Sonneborn. I'm interviewing Marsha Blanco at the Doubletree Hotel in Pittsburgh, PA on July 25th, 2013. Also present is our videographer Ginger Jolly. And Marsha, do I have your permission to begin our interview?

Marsha: You certainly do.

Lisa: Can you please tell me...

Marsha: Got it, yeah. I'm Marsha Blanco. I'm president and CEO of ACHIEVA which is the affiliate in greater Pittsburgh of the ARC of the United States.

08:09:11:10 - 08:09:22:15

Lisa: And Marsha can you tell me when and where you were born?

Marsha: I was born in Central Pennsylvania in 1951, Clearfield County; one of the more rural parts of Pennsylvania.

08:09:24:00 - 08:11:54:00

Lisa: And growing up did you have any experience with disability either in your family or in your community?

Marsha: Yeah oddly I... I grew up in, again, a rural part of Pennsylvania with all of my family members living together on what was once farmland and from my earliest recollection that I believe was from infancy I visited about once a month my grandmother who was mentally ill and who was institutionalized at Warren State Hospital. It was quite a drive for our family by my family would put us all in the car. We would take the long trek up to Warren State Hospital to visit my grandmother and my recollections from early childhood are quite clear. That was one of fear. We could never visit my grandmother in the bedrooms or ward where she lived. Instead we had to wait in long hallways and the nurses or aides would come out and I remember a large, circular rings of keys that they would wear and I remember my mother being upset. My mother was quite a seamstress and would send clothing to my grandmother and I remember my mother's disappointment in that my grandmother would come out in someone else's clothing with their name on the back. A shabby housedress, and I remember my mother being so disappointed. We would take my grandmother out for the day. I didn't have much of an ability to communicate with her because she spoke primarily Ukrainian and I wondered even at maybe 8 or 9 or 10 years of age how it was that people at the institution were able to communicate with her. Wondered if she was able to express her needs to the staff people there. So you could say that I in some ways I shared with folks - I was probably not a red diaper baby but an ARC diaper baby from early, early in my life.

08:11:54:25 - 08:12:42:05

Lisa: Was disability something that your family talked about? Did they talk about your grandmother's disability at home?

Marsha: They did, they did. We had an understanding. I had an understanding at an early age that my grandmother was in this home because she had experienced a great deal of difficulty. Also within our family, my aunt had a sister who had significant developmental disabilities and Palmer was like just a big part of all of our families and I've always regretted... she did not have...she had a wonderful life with family members but there were no community supports or services for Palmer and that certainly as I became more mature and decided this was going to be my field that I looked back on with regret.

08:12:54:20 - 08:15:07:00

Lisa: So you say you did decide that certainly these familiar experiences would influence your choice of career? What did you decide you wanted to do? Where did you go to school? What did you study?

Marsha: Well I went to Indiana University of Pennsylvania. Actually, I was very fortunate in that the federal government, when I was 13 and 14 years of age, when I say a rural school district I think I shared with you, Lisa, that I grew up in a several room school. Mostly in my class were my cousins, sisters, and brothers, and my salvation was the, the book mobile that would allow us to take out 14 books every two weeks and as you can imagine if you were in third grade and your teacher's still covering for first graders and second graders; boredom can be a problem but I was 14 or 14, the federal government was identifying what they felt were students of promise, I suppose, and so I did begin to attend enrichment classes and classes at Penn State University and that was an eye opener for me. It was a little awkward when we were on campus, because I was quite young. Nonetheless I think that that helped me to understand that there was a bigger world out there than Janesville, Pennsylvania. So yeah I went on to Indiana University of Pennsylvania; studied psychology thinking that I wanted to be a professional in the mental health field but upon graduation I went up to Elk County, Pennsylvania and my first job was that of directing a pre-school for little ones with developmental delays and disabilities and I just fell in love with it. At that point I decided that my career should be working with people with developmental disabilities and I just love the children, I love their families, and it just changed my trajectory a little.

Chapter 2: Early Career, Parent Reaction to Conditions at Polk State School and Hospital

08:15:35:25 - 08:16:15:25

Lisa: Marsha you said you were working with children with intellectual disabilities. Were you aware of the growing parent movement in Pennsylvania when you were doing it?

Marsha: It was not in Elk County. That was not the case. This was a segregated preschool and I don't think that the families at that time were talking really; 1973 were not really thinking a great deal about their children's future. I mean they were, at that point, one, two, and three year olds. I think the families were much more focused on just getting over the fact that they had a child with disabilities.

08:16:16:15 - 08:16:49:20

Lisa: Thank you. You graduated I believe in 1973 from school?

Marsha: Correct and then went on to pre-school. Came to Pittsburgh in mid 1974 and was really fortunate to have come under the wing of the department of public welfare which at that point of time was working very, very hard in western Pennsylvania to bring people home from Polk Center.

08:16:49:17 - 08:19:43:25

Lisa: And I do want to you ask you a little bit more about your work with the department of public of welfare but... yes in 1973 it was a time of huge public outcry about the conditions of Polk and I wonder if you can tell me a little bit about what those conditions were.

Marsha: Having visited Polk many times I was astonished the first time that I went on to a ward and saw just bed after bed after bed after bed, very little space in between, perhaps as many as 40 individuals living in a communal bedroom. People were not well clothed. There was a little pre-school for infants who had been born at Polk. Folks would talk with this openly about having just been punished and having to scrub floors. It was just shocking to me. It was shocking to me to see the conditions in which people were living and I, of course, reflectively thought back to my grandmother. We were never allowed to visit her on a ward and were those the conditions in which she had lived for most of her adult life? Individuals would just come up to you, almost like beggars wanting attention, wanting a hug. It was, as a young professional, it was shocking to me. That's all I can say. I couldn't believe the circumstances. Went up there frequently. This was after, of course, my colleagues and mentors at the ARC had blown the roof off the place, literally, through their visits, through their work with the media, to expose the conditions. Folks like Gene Isherwood and Ginny Thornburg, Barbara Systic. They had done the work necessary to convince the department of Public Welfare that those conditions were deplorable, unacceptable, and so the department, without litigation in this case, decided that they were going to rapidly move hundreds and hundreds and hundreds of people back to their communities. It so happens that most of those individuals were from western Pennsylvania with high, high concentration in Allegheny County which is the greater Pittsburgh area.

08:19:57:00 - 08:21:23:15

Lisa: You had talked about your colleagues at the ARC blowing the roof off of Polk - blowing it wide open. Can you tell me a little bit about --

Marsha: [There] were large cribs but they would put sort of a roof on the crib and to see individuals and sometimes we're talking teenagers, young adults just curled in a fetal position as part of behavior management. It was - these were bad times, these were bad, bad times and I always assumed that family members that would come to visit, and we did have a lot of family members who were very, very attentive to their sons and daughters who were living there, had the same experience that I had in childhood. I don't think they ever got to see what was going on in these large wards. I'm assuming, like I, they waited in a hallway in a very nice administration building waiting to see their sons and daughters.

08:21:24:15 - 08:24:41:15

Lisa: So the folks from PARCs, the parents that you just mentioned, put pressure on the state to visit Polk. Secretary Wohlgemuth visited, I believe, in May of 1973. Can you tell me what happened when she visited?

Marsha: I think that she shared that she was appalled and I think that she shared the grave concerns about safety and health and well-being of individuals. It was, I believe that would have been Governor Shapp and concurred and that's when the department declared that they were going to rapidly move as many individuals as they could out of Polk in a short period of time as they could. I've got to tell you it was, it was wild. In a several year period we created, based on a model by the way out in California that was not a realistic model. The belief at that time was that for individuals that were living in large, large, large institutions; that they would need a step down. IE a smaller institution and then would eventually move into the community. So we based the whole strategy on a model from California. Michigan meanwhile was moving people right out of large institutions and directly into community settings but Pennsylvania for whatever reason choose this California model. So in a short period of time there was the creation of four, what became shortly intermediate care facilities that were anywhere, initially, from 60-80 people. Those were Robinson Developmental Center, Verlaine, Allegheny School, and the state did open one of its own facilities. That's to say the state owned and operated it. That was C. Howard Marcy State Hospital. We brought again... we would go up to visit, nothing like the way that we plan now, we would go to visit, meet with individuals. I remember a social worker, at that time it was believed that people should be able to identify coins in order to merit living in the community and but we had a great social worker who would go up with us to interview and meet individuals and he would put out a quarter, a dime, a nickel, and a penny and rather than ask people if they could identify the dime he would just say "Which is the biggest coin?" and if they could point to it he would say "You're going to come home." But yeah, we would just interview people and unlike the elaborate planning that we do now which could take anywhere from six to eight months, we would identify individuals. The folks at Polk would do the necessary paperwork and sometimes within two weeks we would be there with a van and be bringing people home.

08:24:42:06 - 08:26:18:25

Lisa: Marsha let me take you back for a minute if I could because I think your perspective on this would be interesting; when the ARC folks, your ARC predecessors, sort of blew the roof off of Polk. They saw the cages, Wohlgemuth visited, etc. The cages had actually been used since the late 1950s and ARC has certainly been very actively visiting Polk and other centers and reporting on conditions. I think even in '69 they put a very detailed report forward to the state about conditions they saw at Polk. The superintendent, James McClelland, I believe, said that his practices were well known to his superiors. So I'm curious about your perspective on that. Why did it take the state so long to react? Did they in fact know about the conditions that were going on at Polk?

Marsha: Sure, I mean they knew about the conditions. But you've got to put in perspective that this group of moms, along with Bob Nelkin, who was their chauffeur and their cheerleader, were traveling all over the state. It wasn't just Polk. They were monitoring conditions at private facilities, in our public facilities and I think it just got to a breaking point where these very, very courageous moms had said we've had it. We will if necessary bring in photographers under cover. We will do just... I think it just got to that breaking point. We will do whatever is necessary to change this.

08:26:19:22 - 08:28:43:18

Lisa: And you had said that certainly parents didn't have access to the back wards.

Marsha: Mm-hmm.

Lisa: They didn't get to see the conditions in Polk that their children were living in. Once the abuse with hard evidence, the abuse, the use of cages, other types of neglect in the center, how did parents react?

Marsha: The parent reaction at Polk for instance - we're going to talk about Western Center - was I think much different. For one thing we had a lot more public publicity about the conditions and I mean we're talking screeching headlines in what was then the Pittsburgh Post Gazette and the Pittsburgh Press. You also had, I think because of the distance, less active family involvement then you had in later years of the institutionalized. Polk was a far drive from Western Pennsylvania and I think what families have told me what they got to see were once a year there would be a festival, a fair, and I always thought it was cute. A group of women who were called, these were people who lived at Polk, were called the Polka Dots, and they would entertain and I think that families generally did not see what was going on inside. But you did not have that active resistance moving toward guardianship that you had in later days of the institutionalization. Also remember we were bringing people home to smaller facilities, closer to their families so it was done in a, again not in the best of ways. I can look back at it now and say "my goodness", these people could have come right into homes of their own, but in doing it that way I believe that it gave family members a sense that their son or daughter was still going to be well taken care of in what were mini facilities.

08:29:20:13 - 08:29:58:15

Lisa: Marsha you were describing the media scrutiny that Polk was under in 1973 as a result of the advocacy of PARC parents. Did that play a role in the administration's response to the condition at Polk?

Marsha: Oh, I have no doubt. When you have your second largest city in Pennsylvania with screeching, blaring headlines not only about the conditions but about the administration's response I feel that the governor, the secretary of welfare really didn't have much of a choice but to do something to respond to all of these reports.

08:29:58:19 - 08:30:52:00

Lisa: And what did they do?

Marsha: Well they decided that they were going to rapidly depopulate at Polk. And I must say that's probably the only time we've had that kind of response from an administration. Most of institutionalization required litigation, in many cases major litigation, such as Pennhurst - three times before the United States Supreme Court. Some have been achieved through protracted settlement agreements that would take three or four years. In this case I think that the department and Elaine Wohlgemuth personally felt responsibility, accepted responsibility and acted rapidly.

08:30:52:28 - 08:31:10:05

Lisa: Were people held accountable? Did people lose jobs after this?

Marsha: I have no idea how many people may have lost their jobs. Certainly the superintendent did. In those days the Department of Public Welfare had a way of moving people to another facility so...

08:31:10:03 - 08:32:22:00

Lisa: In fact I think maybe a year or so, year and a half after he was fired he was reinstated although not to Polk and he chose to retire rather than go to a different center but I'm curious about the kind of message that might have sent to the parent advocates who worked so hard to expose the conditions.

Marsha: You know, I think that following the department's commitment and their show of commitment in toward institutionalization I think that a lot of the shift... the focus shifted. It's not that people weren't visiting but suddenly there were a lot of people from outside Polk such as those who were of us who were regularly visiting and bringing people home. Advocates only have so much energy and sometimes I think it's up on the roof; it usually is but a lot of the shift for our chapters in Western Pennsylvania became that of securing good community supports for the hundreds and hundreds and hundreds of individuals who were coming home at such a rapid pace.

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.

Chapter 4: Marsha Becomes Executive Director of Allegheny County ARC

08:43:27:10 - 08:45:03:00

Lisa: Marsha how long did you work for the Department of Welfare?

Marsha: Only for about three and a half or four years.

Lisa: And where did you go after that?

Marsha: I went right to, what was then ARC Allegheny and now ACHIEVA. It was ... an opportunity actually came up in camping and recreation and then advocacy and within a short period of time, I suppose a year and a half of my being with the ARC Allegheny I was asked to step in as an acting Executive Director and they did a national search and came back to me, and it was like nine months later, and said would you please accept this job? So I guess I was about... goodness, 29 years of age. Little background in administration; it might have all been clinically really, oriented - but there I had wonderful mentors. One of our trustees who happened to be one of the top people, Arthur Anderson here in town at that time would have me over on Sunday afternoons and a football game might be on in the background but he instructed me and most of the financial knowledge I have today was through volunteers mentoring me.

08:45:03:20 - 08:46:03:05

Lisa: Why did that organization, why did the Allegheny ARC feel like a good match for you? Why did you want to be a part of it?

Marsha: I think I've always been a person who dreams. My glass is always half full and I just could relate, particularly to the family members and co-workers who were very driven by a sense of justice, driven by a sense of civil rights, driven by a sense of how would I say this... we didn't believe that we knew what we were doing but we believed that there would be ways that we could learn and things that we could do to innovate and move the ball forward and I just to this day, that's the heart and soul of the organization and so it was just a good match for me and sort of my characteristics and personal wishes of what I wanted to accomplish with my life.

08:46:10:20 - 08:47:16:00

Lisa: Marsha, the Allegheny ARC - actually, please correct me. Is it ARC Allegheny County or Allegheny County ARC?

Marsha: Ah, we've gone through a lot of name changes. Originally, believe it or not, we recently received an estate - the remainder of an estate. And that was from our first name so it must have been written in the 1950s to the mid-1960s which was the Pennsylvania Association for Retarded Children, Inc. Allegheny County chapter. We had big long names then.

Lisa: Has that changed in the disability field? I'm not sure. ACHIEVA's very pithy but I don't know. Look at our own organization.

Marsha: Long names and then we tend to use a lot of acronyms which I try to avoid because it can be really confusing for self-advocates and family members when we go into our jargon, yeah.

Lisa: So if I say Allegheny County ARC I'm not committing any great offense.

Marsha: You are not.

Lisa: Okay. Good!

08:47:16:01 - 08:48:11:06

Lisa: Allegheny ARC certainly had a very strong reputation for advocacy; maybe one of the strongest in the state. Was it the organization's goal to eventually close Polk or other centers?

Marsha: Yes. Simple answer again; we had a strong, strong... there was moms out there seeing what was going on. I mean they did. They visited statewide and that became a passion for our chapters - our particular chapter here in Pittsburgh. When, in fact, all of our information is archived at the University of Pittsburgh from about 1951 - our founding - minutes and everything, through probably the early 70s.

08:48:45:00 - 08:49:22:16

Lisa: And do those minutes reflect the desire of parents to close state centers? Is that something you would be able to find there?

Marsha: Most definitely. In fact if you were to go back to the records of the ARC of Pennsylvania you will find that it was the ARC of Allegheny pushing and pushing the ARC of Pennsylvania to get more involved in not only visiting, but deinstitutionalization and of course you also have the ARC of Philadelphia at that time. And we were working hand and glove toward that goal.

Chapter 5: Advocating to Close Institutions, Pennhurst Lawsuit

08:49:24:00 - 08:51:32:16

Lisa: So, in 1974 David Ferleger filed suit against the state to close the Pennhurst State School and Hospital and the Department of Justice, the Pennsylvania ARC later became plaintiffs in that case. I know that the state ARC had certainly pursued the right to education in 1972 in a first step towards closing institutions but I know that its membership remained divided around the issue of closing state centers so I'm wondering how ultimately PARC came to become involved in that suit, the suit against Pennhurst; the suit about Pennhurst.

Marsha: If you go back and read through this period of time, yes - there was dissention. I know that our local chapter out here in Pittsburgh was putting substantial pressure on the leadership and the board of the ARC of Pennsylvania to roll up their sleeves and get involved. We had already been able to see in our own community rapidly bringing people home, it was almost an immediate improvement in people's life. Not that it was best practice or what we consider now but suddenly people had a bedroom with only two people living in it, they had personal possessions, they were learning to express their interest in the types of food that they liked, they were allowed to sleep in in the morning if they wished, they were learning job skills. I think that we were able to see already the difference that this could make in people's life and so of course the conditions that were being seen on all of these visits. So yes, some folks at the state level had to be pushed a little. In fact our minutes reflect that at one point our chapter threatened to withhold its dues to the state if the state did not take a more proactive position on this.

08:51:34:05 - 09:01:09:07

Lisa: The closure of Pennhurst was a ten year process. It eventually closed in '87. But in the meantime with Disability Law Project was looking into conditions at Western Center...

Marsha: Mm-hmm.

Lisa: Making unannounced visits...

Marsha: They were actually not looking into it.

Lisa: Please tell me.

Marsha: We were doing, through our local chapter visits, and we knew that following the death of a long time superintendent, Ruth Scott, who was one tough cookie. That's to say Ruth's friends will tell you when the meat was being delivered, if she didn't like the quality of the meat on the truck, she would send it away and say only the best for my folks at Western. She was maternalistic but a very, very involved and this is a woman who would get up and walk the halls at 3am and if she found staffers sleeping she would fire that staff person on the spot. When Ruth retired we noted substantial deterioration in the supports and services. So we began to monitor heavily, unannounced. My colleagues included Joe Angelo, family members, Karen Kelly, who were making unannounced and regular visits. We saw things that we certainly didn't like. I will say, it was not like Polk. That's to say we did not have children and young adults in cages. We did not have bedrooms for forty and fifty people. However, individuals were not getting the support that they would need to become included in their local communities. The pivotal point, so we were making all of these visits, the pivotal point, unbeknownst to us at the time, was that one of our advocates from then ARC Allegheny, Needy Henderson, extraordinary and strong advocate. Secretary John White had come to a function at ACHIEVA, one of our award functions, and Needy who had been with teams of families regularly visiting Western Center asked the secretary at the time - we were a little like "wait, where's the secretary?" We're looking around. She said to him "Secretary White, we're not far away from Western Center. Will you get in the car with me and make an unannounced visit?" It was on a Friday evening. The secretary spent over four hours at Western, came back to his job at the Department of Public Welfare and, unbeknownst to us at the time, went to the state police who assisted the department of Public Welfare in assigning an undercover person to go into Western Center. The person was trained and interviewed as a direct support professional. He was to spend six to eight weeks documenting everything that he saw. Within the first week his co-workers felt, you don't really belong here, who are you? By about ten days, and this is all of course documented, by about ten days because he was to call every evening. He would ... they would transcribe his written reports. He'd run to the men's room and say I just saw an individual from such and such a place, they were, folks were eating watermelon. His piece of watermelon fell on the floor and the staff members made him get down on his chest and wipe it up with his own body. There were just report after report after report that he was documenting. As I said, about ten days he called his supervisory chief and he said "I don't think I can do this anymore. You told me I can't intervene. I'm seeing things that I feel require my intervention." He was encouraged to stick it out. That became for us, of course, powerful information with the Department of Public Welfare to quickly get to a settlement agreement. It was really, you know the folks from our chapter again and from the ARC of Indiana we had some folks from Butler County who then, I actually got together a group of attorneys. We met outside Pittsburgh because we didn't want anyone to see us meeting. It was probably twelve or fourteen of us sat around a table at a tiny restaurant in the dark and we had, of course, not only Ilene Shane and Mark Murphy from the Disability Law Project, but our colleagues at the Public Interest Law Center. We had local folks from neighborhood legal services and we sat for hours and hours that evening figuring out who might have the resources because of course when you're considering litigation like that you have to have very, very good cash flow. You could go for four or five years or, as Pennhurst, ten years without getting any reimbursement for your legal work. We put together a pool of funding and it was really Mark Murphy out here who took the strong, strong leadership role along with, at that time, Frank Laski and later Judy Gran from PILCOP in doing the initial filings and then of course the first hurdle was the certification of class. And as I said we did this differently. I always had very strong feelings for those families who had kept their sons and daughters at home and who were on waiting lists. We of course had seen precedent settlements where the individuals who had lived in institutions were getting everything that they needed in the community and meanwhile our families who had kept our sons and daughters at home were still with very little support and on waiting list for the supports they needed. So early in the formulation of the litigation we involved a family, I'm still close with the family, a mom widowed with not one, not two, but three sons with disabilities; the Luns family. And Eileen, the mom, was courageous enough to go through the process of putting up her family as the example of families in the community who were waiting for supports. So early on this notion that families who were in the community on waiting lists should have some sort of an equal opportunity to have the needs of their sons and daughters met was embedded in the overall strategy. We came out of it with a great team. We were negotiating against Nancy Thaler from the Department of Public Welfare and, in truth, Nancy herself was very supportive of our attempting this one-on-one match and getting through the process. She was of course representing the Department of Public Welfare, but getting through a process that would lead people to better lives.

Marsha: At Western we did have a great deal of opposition. We had a family group led by Dan Terasky who was adamantly opposed. His son had lived there for many, many years and was the chair of the board. I mean these centers actually had boards that met monthly and so there was strong opposition from day one. Even to the court determining what the class would be.

Chapter 6: Closure of Western Center

09:01:12:05 - 09:01:46:08

Lisa: Why was the opposition particularly strong in Western Center's case do you think?

Marsha: You had a well-developed parent group. You had leadership of that parent group who had made a decision many, many years ago and felt that they had made the right decision and while they did concede that there were some issues at Western, they felt strongly that they could be fixed from within.

09:01:50:05 - 09:03:17:11

Lisa: Around Western Center folks like Dan were urging other parents who were resistant to closing Western Center to get guardianship.

Marsha: Absolutely. It's a big issue even today in terms of deinstitutionalization and Dan on this end of the state and Polly Spare on the other end of the state were actively encouraging. In fact they hired an attorney who would do mass guardianship for families who really, really resisted the notion of their sons and daughters coming home to community support. Recognize also that most of the individuals from, were living at Western Center, were also from Allegheny County, also Beaver, small amount Butler though most of those folks had come home from Polk, West Moreland County. Families were close. They visited every weekend, every other weekend. It wasn't like individuals at Polk who might have a few visits a year. So you had active family engagement, you had a leader in the national movement of Voices for the Retarded and they were, frankly, hell bent on keeping it open, yep.

09:03:18:04 - 09:04:48:25

Lisa: It seems what was certainly driving the resistance was their fear that people with significant disabilities couldn't be served in the community. Did you think that any of those fears were valid?

Marsha: Those fears have never been valid. I mean, we know as professionals that for every individual who might be very medically fragile or have significant behavioral challenges, for each of those individuals who were living at Western Center, we had individuals, they're twins living in a home with their families with minimal support and families were making it work for that son or daughter. Did we need to increase some fundamental supports? Yes. Medically we needed to work with the University of Pittsburgh to identify physicians who could work with individuals with significant disabilities. Dental work, we identified individuals who had had significant experience working with people who might not want to open their mouth to see a dentist and so there were infrastructure pieces that needed to be put in place, but we knew that it was doable, sure.

09:04:51:12 - 09:07:30:19

Lisa: In April of 2000 the state did begin to shut down Western Center. That was a particularly....

Marsha: Controversial?

Lisa: Controversial day.

Marsha: Yeah.

Lisa: Can you tell me at that point how many folks were in Western and what happened the day that the majority of those folks were moved from Western?

Marsha: There were probably only about, I'm going to say sixty- some people remaining at Western Center and staff was being laid off and the Department of Public Welfare made the determination and we through the settlement knew that the time had come. Nancy Thaylor, with the assistance of the state police, made a critical decision. Families knew that a large number of people, it may have been as many as forty people, were going to move to their established homes in a day and those families still, even though some of their sons and daughters had left Western Center, were still very, very resistant to the closure of the facility. So they lined up outside the gates of Western Center with reporters waiting because they had already announced they were going to stop the vans. That they were not going to allow them to leave Western Center. Well these were families that were used to coming up to the main gate and forgot the back through the orchards, there was a second entrance and so the Department of Public Welfare well staged this. That's to say they had police cars and things out in the main entrance where the families and the media were waiting and instead they escorted folks out another entrance to their homes. So yeah, again, screeching newspaper headlines and it was not an easy day and of course we all looked back on that for a long time, and talked about it with Nancy. It was a bold decision obviously. But she felt in her heart of hearts than rather to have a confrontation with family members and union members that she would opt for an alternative.

09:07:31:20 - 09:07:37:05

Lisa: Hindsight being 20/20 could it have been done differently?

Marsha: I think she did the right thing.

09:07:41:15 - 09:09:34:16

Lisa: I know that disability advocates, parents on both sides of the closure issue criticized the way Western was closed. It's interesting to me that the advocates on both sides, or the people who were vocal were often parents of children with disabilities and I'm wondering how the parents interacted with each other?

Marsha: There was a lot of tension. There had been tension between family members who were active with the ARC and who had kept their sons and daughters at home and with the family members who had made a different decision, and had their children; sons and daughters in ICFs and more. Bubbled over a couple of times in the court room; federal district court here which doesn't have a lot of pews and seating but it was pouring out into the hallways. I think the folks kept their cool fairly well but the parents group at Western Center used every opportunity that they had to challenge the initial decision on the class. They were challenging continuously and while that slowed things down in terms of achieving a settlement agreement it also I think exasperated some of the tension that already had existed between and among family members who had made different decisions and saw the future in a different way.

09:09:35:12 - 09:13:12:24

Lisa: Marsha not everyone who left Western Center that day, of the police barricades and the parent protests went to community directly.

Marsha: We were really upset about that. That's right.

Lisa: And I think that played out several times, when centers and ICFs closed people perhaps with the most significant needs were just simply...

Marsha: You also had it at Altoona Center. Now in certain number of cases, these were individuals, though the Western was going to close on a given date, these were individuals though for maybe some reason their home in West Moreland County was not yet ready because there was neighbor resistance and we were going through litigation under the Fair Housing Act. Some of it was that the timing for an absolute closure didn't work, but you could no longer keep Western open for what I think was twenty-six people. So a number of those individuals went up to Ebensburg and subsequently came into the community. To put this in perspective remember that, talk about a lot of work in the community for families, for providers, and of course the self-advocacy movement was emerging at that time. We were not placing those 400 people from Western. They had community companions. So we were, once again, rapidly putting into community support, some 800 people. And once we achieved the Settlement Agreement there were tight deadlines that had to be made and I know that in some parts of the state the community providers view themselves as competitors. Again, Pittsburgh is close to Ohio. We are as much Midwestern as we are east coast and the provider systems just worked together beautifully and it was the first time that I had experience as a professional in deinstitutionalization doing things the way it should be done. That's to say roommates weren't assigned because they happened to have lived together for many years. There was family involvement. Our families in the community got to meet each other over an extended period of time and would meet at Eden Park and the families would share their sense of values and we really tried to make, if two people were going to live together, make that the decision of the two individuals who were going to live together but to involve their families in the whole experience but yeah, our providers -provider system -was working very, very, very hard and trying to do this in the best way possible. A little group of us at what is now ACHIEVA were assigned the responsibility. We did not have a Special Master. We were monitoring everything with the Department of Public Welfare so we would get bi-weekly report; each individual, who their case manager was, what their new address was, what the annual expenditure would be, the copy of the ISP, and we monitored all of this with great care.

09:13:32:22 - 09:14:36:15

Lisa: You just referred to the monitoring of people once they moved to community making sure they were happy and safe in their homes. I believe Dan Trosky, the president of the Western parents group, son's moved into community and Dan along the line became happy with his placement. Is that true?

Marsha: That's accurate and you know that's the common, common experience as you know and our deinstitutionalization efforts. Families, even those who resist the hardest, often times come back to us afterwards and say my son or daughter is really happy. The provider is doing a great job and we never quite get that apology for all that resistance, but the fact that they as family members are as pleased as their sons and daughters seem to be in community supports is fulfilling, yeah.

Chapter 7: Federal Mandate for Early Intervention, ARC Becomes ACHIEVA

09:14:42:00 - 09:19:10:20

Lisa: Many children have been diverted from institutions since 1972 by virtue of the Right to Education Act that the Pennsylvania ARC fought for and won but children with significant needs, medical needs particularly, could still be sent to nursing homes and other facilities for support and care. I know that changed dramatically in 1986 when there was a mandate, a federal mandate, for early intervention services and I'm wondering how that mandate changed the scope of your work at the ARC.

Marsha: Well ACHIEVA had for many, many years provided integrated pre-school settings and long before they were mandated by the government we knew that those formative years were important years so for a long time we were privately funding what are now called Early Intervention services. We had therapists, developmental therapists, speech therapists, occupational and physical therapists available for families. Remember, we could do some of this through insurance though even that was pretty minimal back in that day. Families have now an opportunity from so early on. We just had a four week old in our office last week. A little one with Down syndrome, and I have to tell you [on] the worst of my days, what I do is stroll back to Early Intervention to talk with families and to see these remarkable therapists. I mean they might have a six, seven week old down on a mat with two therapists playing the baby. It looks like they're playing with the baby and within thirty, forty minutes they're able to sit down with the family and immediately tell the family where they think that little one is in terms on developmental norm for that age. Early intervention has been a godsend to families. We at ACHIEVA provide early intervention supports in either ten or eleven counties, and we see well over 1200 little ones each year; that's birth to three, and I have to tell you. As much as the importance of the work with these babies and toddlers, it's also having the opportunity to work with their families. I would say many, not most, but many families upon the birth of a child with a known developmental disability, they actually go through a process of mourning. The shattering of the dream of having that perfect child who is going to become the president of the United States, you know, but to have professionals who can take families through the process. As I expect you know it's often times harder for dads to get to that point of acceptance than it is moms. Grandparents, I mean you deal with a constellation of issues and I just so, so admired the therapists and social workers who are working with a young families and also imparting on them, in them, from that early, early stage; you as parents are going to have a real life to live. Your child is going to have a real life to live. We're able to instill thoughts about inclusive practices. We of course have always had educational advocates who will work with families during the transitions who attend IEP meetings with families and that whole educational experience including now the hottest button, the transition of young people from school into community supports is something that we're working very, very, very hard with school districts throughout south and western Pennsylvania to get better at those transitional years.

09:19:11:15 - 09:22:24:10

Lisa: Marsha you had mentioned when I said ARC you had mentioned ACHIEVA. I'm wondering when you can tell me when ARC Allegheny became ACHIEVA and what that...

Marsha: It's about ten years ago and we are, and always will be, affiliated with the ARC of Pennsylvania and the ARC of the United States. It gives us our sense of values, the way that we approach everything that we do in terms of supports. But increasingly ACHIEVA was being asked by individuals and families to provide supports to children and adults other than those with intellectual disabilities particularly in early intervention. We, of course, providing supports to babies with low birth weight, little ones with Spine bifida, Down syndrome, Cerebral Palsy, and the ARC has always been affiliated with primarily people with Intellectual Disabilities. On the other end of the spectrum ACHIEVA operates a large and rapidly growing trust for individuals with disabilities and today we have over 2,000 individuals who have discreet trusts with ACHIEVA. We're managing, oh, somewhere around 75 million dollars in behalf of those individuals in meeting their needs by way of simple explanation, a properly constructed trust by not for profit allows individuals and families to place private funding into the trusts and the federal government guarantees that those funds, those private funds, will not be counted as an asset for the individual that would otherwise disqualify for primarily their Medicaid benefits; for their long term supports. So we were one of the first organizations in the country to get through the social security administrations, the centers for Medicare and Medicaid services. We were actually the first non-bank institution in Pennsylvania to be authorizes to operate a trust and the trust is open to individuals of all types of disabilities. So we decided that we wanted to be available to the broader group of people with disabilities and since the name ARC was quite established as the place to go if you were an individual or family member with an intellectual disability that we actually renamed the parent... this is all structurally complicated but ACHIEVA became the parent organization, but we do have three county ARCs as subsidiary as the parent; the ARC of Beaver County, the ARC of Westmoreland County, and the ARC of Allegheny County or Greater Pittsburgh.

09:22:24:17 - 09:23:11:05

Lisa: Thank you. Marsha you had mentioned the Family Trust which is so exciting. As you said you are one of the first in the country to pursue such a thing. ACHIEVA has a reputation for innovation in lots of areas, not just the Family Trust. Family support is certainly an area where ACHIEVA has been particularly innovative.

Marsha: We were the pilot, actually, for under Doctor Jennifer Howse, when she was the deputy secretary. She choose ACHIEVA to pilot our first initiative for family support funding through which family, very minimal amounts of money, through which families could make their own determination of how they would like to use finds in support of their son or daughter.

09:23:13:00 - 09:24:55:07

Lisa: What kind of an impact have you seen that level of support make for families, have on families?

Marsha: Family support itself funded by the state and minimally by the county is not really the primary support now. Families find large have gravitated to what we call the person in family directive waiver and that's a capped waiver through which the federal government provides just over fifty percent of the funding and families do have still, actually... less given our less waiver amendment but a fair amount of digression on how they want to use these capped funds, which are capped now about 30,000 dollars a tear and so families could decide with their self-advocate would you rather have your job coach available to you three days a week or would you rather go on a trip or have respite so that mom and dad get out of your hair now and then. So families have a fair amount of digression although I will say the Department, in my view, has through service definitions tied the families' hands more than I certainly would have if I were in that position. I would give a lot more digression. My belief is individuals and families know what they need. They know what they want and are in the best position to make determinations on what I would love to see be a broad, broad, broad menu of choices.

09:24:57:00 - 09:29:12:00

Lisa: Marsha you mentioned just a few moments ago that in the sort of support council advice that ACHIEVA gives to families, you certainly talk to families whose sons and daughters are graduating high school into what will come next. Workshops are still in many ways for many families the only option- employment option- for their sons and daughters. Is that true or is that someplace...

Marsha: I don't think it's really the only option. You see and, in fact ,I was just early this week in Washington DC and spent some time with Senator Tom Harkin who of course has taken this issue on as strongly... I'm just heart sick to know he's going to retire but Pennsylvania is and has been for many, many years been an employment first state. That's to say it was declared Gubernatorially. I think it has a lot to do with the incentives. It does have a lot to do with the ages of individuals. The workshops that I see now you do have individuals in their 70s, when most average Joes might have retired. I have already spoken with Fred Lokuta who is currently the Deputy Secretary [Pennsylvania Office of Developmental Disability Services]. I said, "Fred we are going to have to come up with a new service definition that categorizes for a certain number of people". I think it's a small number, something between the option now, which is essentially adult daycare and the workshop. I believe the workshops should close. I actually have a bet out there. We have the litigation now and which will result in a settlement agreement in Oregon to close sheltered workshops. We have Providence, Rhode Island which the Justice Department just busted for people making twenty-two cents an hour in workshops. But you also have, at the national level, a growing movement to do away with the provision that's ancient now from shortly after World War I that would allow people to be paid less than the minimum wage if they're working in a workshop. My bet is that, particularly in the Obama administration, we may have the minimum wage issue result which will virtually close workshops before things wind through litigation in the federal courts on the ADA issues that are in fault. So yeah, they are dinosaur. They are a thing of the past and I think that Pennsylvania and all other states are probably going for a minimal number of people, are probably going to have to come up with something that is better than an adult daycare center. I mean we shouldn't have fifty and sixty year olds cutting out pictures of Easter Bunnies at Easter time and Santa Clause at Christmas or Hanukah time. You know, younger people and families get it. Our workshops are still in by large an older group just as my parallel, in my mind, is just as we shut off children going into institutions through the Right to Education, I believe that we will shut off people going into sheltered workshops by providing employment opportunities and a really, really strong transition while young people are still in school. If we can introduce them with good job coaching through Department of Ed funding and some OVR involvement to good jobs that are suited to their interests they'll never want to go in there. That's the parallel in my mind at least. Shut it off at the pass.

Chapter 8: Working to Continually Innovate

09:29:21:23 - 09:32:16:21

Lisa: Marsha people with disabilities have been living successfully in the community for forty years or more?

Marsha: I think more, yeah.

Lisa: More?

Marsha: I'd make it fifty.

Lisa: Okay, fifty works for me. They have a physical address that says they're apart of community but I'm wondering if socially the integration has been as successful and yeah, what do you think?

Marsha: I think we have a long ways to go. I think I said earlier, I personally and we as an organization believe that we have made progress but we've not really scratched deeply the surface of what real inclusion is going to look like. I'm so proud to have been a part of the progress that we've made to date but even in orientation I think I shared with you that I say to people coming into the field, if anyone tells you that we know what we're doing, that person is not being honest or they're faking themselves out. I think we're getting better and better in terms of the processing and family members are driving that but yes, we have a lot of little pockets of three and four person homes where it's the very structure of it. If you have one staff person with three individuals and those three individuals want to do different things then great compromises are going to have to be made by two people for that one person who wants to go to the mall rather than to the movies or to volunteer that evening. So the very structure of the way that we done home does not really work to the benefit of individuals living the life that they want to live. I mean I'm saying to the individuals could be compatible. That might not be the issue at all but different people have different interests and you know, with my husband, if I want to go up and read at nine o'clock and he wants to continue to watch the ball game... yeah, that works. I don't think it always works real, real well for individuals in the kind of structure environments that we've created. It's not as though individuals are living forty and fifty people on a ward in an institution any longer, but I think we have a long way to go and a lot of listening to do to design better ways to support people.

09:32:18:20 - 09:35:29:00

Lisa: The work that you've done with ACHIEVA certainly affected change locally in Western Pennsylvania. Do you feel that through your work through ACHIEVA's programming you've been able to effect change either state-wide or even across the country?

Marsha: You know, I have the privilege early on in my career to be an appointee to the Accreditation Council. One of two appointees, as I said, along with Elizabeth Boggs and certainly the Council has done a great, great deal to change the way that people are providing service and supports. I had the opportunity of being the president of the National Conference of Executives of the ARCs and those with the 700 plus chapters and the professionals within and certainly hope that in my years on the board and as president, that I may have influenced a thing or two in terms of position statements. I was also actually the first person in the country to ever be allowed to be a member of the Board of Directors of the ARC of the United States with all these volunteers and I sort of broke through that barrier but as much as anything I've had the opportunity to travel to most of the states in the United States. I have provided substantial consultation to other organizations and the had the opportunity in both New Mexico and Florida come to mind as sort of top of the line when their state governments were resistant to applying for their first waivers and I know that I had some influence in testimony and getting those two states that were among the last states to want the federal government butting in on their business and to convince them they could vastly improve their community supports by filing for and subsequently getting Medicaid community based waivers. So yeah, it's been wonderful to work with colleagues from all over the country who share common values, who know that we're only part way on this horizon and to feel and understand with them that by working together we're going to accomplish a lot more and gain a lot more progress by sticking together as a family of people who share values and a dream about people with significant disabilities leading real, regular lives.

09:35:29:10 - 09:35:55:25

Lisa: Thank you. ACHIEVA's been so innovative but of course innovation requires funding and I think you've said the government sometimes feels most comfortable funding the tried and true.

Marsha: Yeah. they just don't fund. Government rarely funds innovation unless it's through litigation, or strong, strong, strong advocacy.

09:35:55:27 - 09:39:04:05

Lisa: So how do you continue to innovate?

Marsha: We are very fortunate to live in a wonderful, wonderful community and ACHIEVA is a high profile organization in our community. Currently we are on an eight million dollar capital campaign. Since we last met, Lisa, we were about at... we're well over six million dollars and all four undertakings are toward innovation and the development of new ways of looking at things, new ways of looking at things. One of our undertakings is... I'm not allowed to have a favorite in the four but... is called a Home of My Own. My colleague Nancy Murray is heading up this undertaking. We've been meeting with groups of families in several counties who were families still intact. Where sons and daughters are in their late twenties, mid twenties, late fourties and they're going to be on this Waiting List forever in Pennsylvania until something disintegrates with the family. These young people are not going to have the opportunity like their brothers and sisters who went to college to get off on their own and find an apartment and have a compatible roommate and so part of our major investment from this campaign is working with families. If there are two young women who have known each other forever, they went to school together, they're working close next to each other, the families have known each other forever, if they want to live together we're going to help families through private resources. Pulling together all of the various things that we can bring to bear with public resources to help these two women to live together and to get their parents out of their hair. So it just, it's an example of just we believe that right now you know with waivers as they exist, particularly the consolidated waiver in Pennsylvania it's an all or nothing. Either you're locked out and waiting or you're in a three person home and all of your needs for health, safety, and your well-being are bring met by the government. We think that there is a third rail. A lot of your families wait to participate just as they may have sent an older brother or younger brother to college, they have the means and want to participate in some way in supports for a son or daughter with disabilities and of course we have the trust that allows them to do that safely without interfering in any way with the government funding that we can bring to bear so just an example I mean, again, you've got to try new things because government is going to fund basically old things and I can't tell you what a pleasure it is to work with an organization that has the means to raise the funds to try new things.

09:39:05:23 - 09:41:39:18

Lisa: So throughout your career you and your colleagues I would assume often, to create risks and take risks to innovate professionally certainly maybe personally. I've heard about some of the letters that came to folks when institutions were threatened with closure. You did it all to better the lives of people with disabilities but why were you willing to do so? Why were you willing to put so much personally or professionally on the line to do so?

Marsha: First of all you have to have a Board of Trustees that's willing to back you and what some might say were occasionally whacky ideas. It truly my depth of admiration and friendship with a host of people with disabilities and their family members. They've allowed their dreams to become our dreams as professionals and what a privilege and what an opportunity to be a part of a movement that has accomplished so much in such a short period of time. I... I reflect sometimes on historical information from the time of the recording of information. These thousands of years where an individual with disabilities were viewed, if he or she were allowed to live, isolated, segregated, families became isolated. To be a part of this really adventurous fifty years, to have been born at the right place, I guess, at the right time to be a part of this is an unbelievable life experience. I've had great support from my husband and sons. To do something about which I have great passion and it's all about the individuals whom I've come to love and their families whom I've come to love.

Chapter 9: Reflections on Career

09:41:43:15 - 09:43:53:16

Lisa: Is there looking back any particular contribution or accomplishment you take particular pride in?

Marsha: I don't like the word pride so...now there are a couple of things that I've done that I wouldn't use "I". I mean, you work with extraordinary people. You know what, I will. I'll give you one that is reflective. For many, many years I don't know if the name Dr. Norman Mulgrave has come up but Norman, a Trustee of ACHIEVA many, many, many years and he worked hand and glove with Ginny Thornburg and Pat Clapp and Jean Isherwood. Norman was a professor and head of the Senate, actually, for years at the University of Pittsburgh and Dr. Mulgrave has a booming voice and it was that professorial type of thing that I'm sure you are familiar with at Temple but Norman and I had been lobbying in Washington DC one time years ago and we were having dinner and at one point he sort of leaned across the table and he said "Marsha I believe you have but one great talent" and I'm sitting there and I'm working my butt off and I'm thinking maybe two or three little things, Norman, you know? What he said was you manage to surround yourself with the most talented people in this field and you make them loyal to the values of the organization, and despite my initial offense at Norman, I reflect upon that over the years and yeah, maybe the thing that I'm most proud of is that I have had some part in bringing other people into this movement and mentoring and nurturing others to carry on.

09:43:57:15 - 09:46:54:10

Lisa: Earlier in our discussion you talked about being aware that you were a part of a Movement; this wonderful Disability Rights Movement. Where do you see this Movement headed now?

Marsha: Do you mean what do we still have to do? Is that...

Lisa: Yeah, I guess. Maybe that's too big of a question.

Marsha: I mean we still have tons and tons of things to do. I love the fact that some of the founding members of our organization, some of whom have now passed away or of course are older, that their sons and daughters are stepping up to the bat. We have, among our trustees, some extraordinarily talented people with big, big jobs in Pittsburgh who happen to be second generation folks of the ARC and you know who share their tales of their father and mother being away for the weekends and missing that but knowing that the work that they were doing through the ARC was important work and now brothers and sisters stepping up. I think one challenge is that families, younger families, some younger families take it for granted that the supports that they receive; early intervention, education, transition services, a job coach that they think those things were always there and I work to help younger families appreciate that the family members who preceded them left really, you know, their blood in the street to great sacrifices to their families, to work to create the great community support system that they have; not that it won't improve because it will improve. I think that a lot of families don't appreciate the work that was involved and that they need to commit to working to both keep these things in place as well as to take the next steps toward improvement. A couple of big things that were out there as well as the things that we've already discussed in terms of making supports I wanted to say it that way because that confers that they have to be created but listening to individuals and then providing what supports they need based on the individuals needs as opposed to the staffing in the group home and that sort of thing, you know. A lot of work here yet.

Lisa: Thank you.