Chapter 6: Parent Network

13:13:35:06 - 13:16:32:03

Lisa: Nancy, I wonder, so many of the parents we talked to mentioned Leona Fialkowski as being a mentor and an influence. I wonder if you could describe her a little for us.

Nancy: She was - - had the biggest heart that you could ever want to know. Her husband was so supportive of her. It was a lovely relationship, and she cared so deeply, and she fought so hard, and at one point, she was at some position with the state having to do with the closure of Pennhurst. And I remember going to the hearing in Judge Broderick's court, and she was there, and I was there too. And what a success.

But she, as far as I was concerned, single-handedly got us into the school system, with the support, of course, former Mayor Dilworth and Reverend Henry Nichols. But she even went to the dental society, asking them what kind of dental services were available for our kids, and spoke to my husband about the lack of training in that -- there was no training in the dental schools to handle children at that level.

And so she went fighting on her own that way, and she was such an inspiration to so many people who -- and she brought so many people together, and people did listen to her. They did listen to her, and then there was a -- an awards system when she passed away, and I was honored to receive one of the awards, the Leona Fialkowski Award, which is in my living room, and I met some of her children, and in fact, I can't think of the youngest one. You know her.

Lisa: Kate?

Nancy: Kate, yeah. She was five when we started this business, and then there was another one, Barbara, who lived out of state, who was always very concerned about the two boys, and she'll never be forgotten. And as I said, her husband, they always called each other mother and father, instead of their Christian names, but they were so together on what they were doing, and so supportive of one another. It was just wonderful to see, and she was determined that her children and every other child was going to get the services that they deserved. And as I said, she was my mentor, and I will never forget her. Because everything that I am today came from her, from her image, from her leadership, and so many were that way.

13:16:32:03 - 13:21:12:11

Lisa: Thank you, Nancy, for sharing that. I'm wondering if there were other parents that you felt a particular connection to. I wonder if there were other parents of children with disabilities that you felt a particular connection to during this time.

Nancy: Oh, there was the -- of course Mureen Devaney and Dee Coccia, part of the advocacy group that we started, simply because of -- well, let me back up a little bit.

When Robbie was eighteen, I realized that she's going to need something after twenty-one, and I start looking around, and again, I saw a little blurb in the Northeast Times: would you like to be on an MHMR board? I had no idea what it was, and so I called, and they told me when there was a meeting, you know, and I went and I saw somebody there that I knew from before, from the park aides, and I thought, well, it's not subversive, and that's how I got into the system.

And I got on the board of PATH which is in the Northeast, middle of the Northeast. It's a mental health and retardation agency. And Maureen Devaney was on the -- chairperson of the family group at PATH, which was not on the board. The thing that they're -- different families met there to discuss what they need, and one time, she called me and said, "Nancy, please come to a meeting. It looks like the state and the county want to eliminate sheltered workshops".

And so I went down, and our workshop director went down from PATH, and some other board people, and there was an attorney there who was talking about the closure of workshops. They didn't see the value of it. And that's when I also heard a voice in the back of me, also who knew Leona Fialkowski. Her name was Mary Curcio. She was on the board of PEP -- Programs for Exceptional People -- and she was one of these people, like Leona, in South Philadelphia, who got other parents together, and they formed a group to start this training for children like that.

And we became friends, we got others together, and we started the Philadelphia Council of Concerned Families, which was an advocacy group. We got no money, the coalition, which is made up of the large number of comprehensive MH/MR retardation agencies in the city who gave us space, and a time when they could give it to us. My own agency provided the mailing for the meetings, and we had people coming from all over the city. Mostly moms, because it was in the morning, and then we decided on what we wanted to do, and we had people coming from the county, from the state, to meet with us, for us to have an opportunity to express our concerns, what we felt there was a lack of, for them to listen to us and try to respond appropriately, and that's how we learned, that's the way we took this information back to our own parts of the city. And that's how we kept informed.

We didn't encourage a large group trying to get more membership, because if it gets too large, then not everybody could be heard, and that was important for everybody, to be able to express their concerns and explain their own personal issues and their own personal history. But along the way, I was honored by COHMAR several years ago for the Dot Anderson Award, and that's when I expressed then all the people that I met coming up, because nobody does anything by themselves. Whatever you've accomplished and you've been recognized for, it's because of everybody that you met along the way, and the people from the county, Kathy Sykes, Mike Covone, Estelle Richman, who I don't think anybody has to -- doesn't understand where Estelle came from and where she's gone -- was a very, very big advocate and came often when we had questions, and we expressed some of our concerns and we pointed out some irregularities, and they listened to us. So we did make a difference.

13:21:16:17 - 13:23:59:26

Lisa: Nancy, you talked about being mentored by wonderful people like Leona and other friends and peers like Maureen Devaney and Mary Curcio, my apologies.

Nancy: Mary Curcio is just -- we were almost like twins. She lived in South Philadelphia, I lived in Northeast Philadelphia. We had the same anniversary date, believe it or not. We had gotten to a point where it was almost like a marriage, where if you say something, your husband can pick up right away, and this was it. She would start something and I knew exactly what she would say, would finish it, would finish the thought. We were on the same plane, and she passed away last year. It was such a loss. We were so accustomed to speaking to each other several times a week, and we were both on several committees. Of course, she was so supportive.

If I wasn't able to be at the Philadelphia Council for Concerned Families, she could take over, and she was so active down there, and people looked up to her. She was -- I think in a way she was a little bit nicer than I am. Because I said at times I could be judgmental; she was never judgmental. And I learned a lot from her that way. I tried to not be, you know, impose my views on what I thought about other people, that whatever they did or they didn't do. She always found reasons for whatever they did or didn't do, and so I was able to step back a little bit, quite a bit, and don't be in such a rush to judgment.

So for everybody that you meet, you always gain something from them, and the support that you get from them, which is -- you just can't even think of all the people that have been there for you, and supported you, and that you learn from, and I've said this quite frequently is that if it hadn't been for Robbie's disability, and that she was personally involved with it, you know, and it breaks my heart, because of you worry about the future, about the isolation, since she doesn't have any speech, she's hearing impaired, of not being able to interact with other people like herself. But she's learning, and -- I'm losing my train of thought.

13:23:59:26 - 13:29:14:27

Lisa: That's okay. You were talking about what the relationships with other mentors --

Nancy: Yeah, that if it hadn't been for Robbie's disability I would never have met the people that I met, the people that I mention, but also the people from the county, and the people from the state level, and legislators who listen to you, especially their administrative assistants, who were the ones to get to, and who understood.

I went to see one, one time, and his mother had problems, and so even though she was elderly and he was looking for services for her, the proper nursing home and the unavailability of maybe the appropriate nursing home. And so he fully understood where we were coming from, of looking for the proper services, or opening up residential programs, that kind of thing. And so you found so many people who were willing to help, and who would listen to you.

And we would go visit -- or I would go visit some of the legislators, not asking for anything in particular at that particular time, not asking for a particular piece of legislation; just to meet them and tell them about our agency and who we represent and what we do, and about myself. And so to have some sort of rapport with them, and that you were not just a number, and we had some meetings with former state senator, who met with some families who were looking for services. They were aging out of some of these services when they were eighteen, had no place else to go, and of course I was chastised after that by the administrative assistant. He said, you know, brought tears to our eyes. I said that's what I wanted him to remember.

They're not numbers anymore, so when he hears about legislation that comes up, to support or to enlarge programs, or services, that he'll see the faces and not just think of them as numbers. In fact, not long ago, there was a little piece in the paper about some legislators and some people from the governor's office went to see -- they called the [institution] -- they called it a little gem. I don't know how you can call an institution a little gem, and that was very upsetting to me.

And I'm also concerned about- the fact is that- as we are concerned now, with the budgets coming up and with the cuts that have been set forth, that we're going to -- the state is going to destroy all the advantages and -- that we have built into the system, for the past 55 years, for my life, for Robin's life, are going to be demolished, and that people coming into the system will have no system at all, and not have any services.

There would not be sufficient money, so that providers may have to cut services, have to cut staff, and all you're doing is enlarging the unemployment system and hurting the very vulnerable people that they promised to help. And -- which we're trying to counteract. In fact, there's supposed to be a rally next week in Harrisburg, which we have given some financial support for a family who can go up and stay overnight. I can't go to Harrisburg anymore. Those days are gone for me, but we can certainly support those people who are able to do it. And this is a grave, grave worriment that I have.

And it's not Joanne's responsibility to take care of Robin when I'm no longer here. I've tried to set forth things done in her ISP, that Robbie is to remain in her home that she's known since she's been two months old, with the support from my agency, and I don't care if they make it into a CLA.

And of course she can remain and be happy that way, and other people have listened and they're trying to do the same thing. You can't will your home to the agency, because you never know what the budget's going to be, but there is -- in the ISP, it's like a legal document, so you can say this is what I want, this is how I want it to be done.

Of course I'm a little prejudiced. I feel my agency's the best, so I only want them to monitor it and to take care of it that way. And they're very good that way. We're a family at this agency, it's a family. We relish longevity in our staff, so we have staff who have been with us for 34 and 35 years.