Q. Can You Please Tell Me

Visionary Voices: Interview with Marsha Blanco
July 25, 2013

08:08:30:28 – 08:09:09:20

Q. 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?

A. You certainly do.

Q. Can you please tell me…

A. 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.

CHAPTER ONE: BACKGROUND

08:09:11:10 – 08:09:22:15

Q. And Marsha can you tell me when and where you were born?

A. 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

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

A. 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

Q. Was disability something that your family talked about? Did they talk about your grandmother’s disability at home?

A. 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

Q. 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?

A. 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 TWO: EARLY CAREER, PARENT REACTION TO CONDITIONS AT POLK STATE SCHOOL AND HOSPITAL

08:15:35:25 – 08:16:15:25

Q. 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?

A. 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

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

A. 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

Q. 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.

A. 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

Q. 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 --

A. [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

Q. 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?

A. 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

Q. 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?

A. 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

Q. And you had said that certainly parents didn’t have access to the back wards.

A. Mm-hmm.

Q. 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?

A. 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.