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Patricia Whalen chapter 9


Chapter 1: Background and Early Career
Chapter 2: Pat Hired as School Nurse for Chester County ARC
Chapter 3: Tom Thumb Program, Looking for New Ways to Support Children in the Classroom and at Home
Chapter 4: Isolation of Families, Need for Services
Chapter 5: Looking for New Service Models
Chapter 6: Empowering Families, Infant Stimulation Program
Chapter 7: Buy-In from the Medical Community, First Step Program
Chapter 8: Pat Moves to Virginia, Leaves ARC of Chester County
Chapter 9: Reflections on Work with Chester County ARC (you are here)

transcript - entire interview

Patricia Whalen Interview (Word)

transcript - current chapter

20:09:22:10 - 20:09:28:09

Lisa: So First Step still exists.

Patricia: Yes.

Lisa: Some 40 years later.

Patricia: Yes.

20:09:28:20 - 20:10:14:15

Lisa: What's the program like today?

Patricia: Well as far as I know I hear wonderful things about it. I know that they're still seeing children. They're still seeing children in the home, so I think that piece of that which was dear to my heart, that we start early, is still there. They have a wonderful new building that has; they don't have to worry about the borrowed chairs and tables and things in other people's facilities. They have their own and I think that's wonderful and they're providing wonderful service and I think that's absolutely the best thing that could have ever happened.

20:10:15:15 - 20:10:28:28

Lisa: Would it be safe to say that the career that you had at the ARC of Chester County wasn't the career you had envisioned for yourself?

Patricia: No I never would have, never would have expected that.

20:10:30:17 - 20:12:02:19

Lisa: So what did the program mean to you? How did it change you? Or did it change you?

Patricia: Oh absolutely. It changed me because I was... I had never seen these kinds of problems. When you're in the hospital you're protected to a very great extent. I know that might sound strange because nurses see all kinds of things in hospitals and that's true but you see them in a different way. You see them in your environment; the environment that you're controlling and having gone into this program and reached out to the community and seen people in their homes and seen the effects of this which comes, no matter what social status, there's no protection against having a child born with a problem. It can happen to anybody and does. And so that certainly opened me up to knowing that there's always going to be more needs out there that needs that must be met and so I've always wanted to ... I've had a better appreciation of a world that's not as narrow as mine had been before.

20:12:04:05 - 20:12:27:26

Lisa: So of all of the things that you accomplished, the many things you accomplished, through the First Step Program to the infant stimulation program through Tom Thumb; is there any one thing that gives you the most satisfaction?

Patricia: Yes, one thing; that 40 years later it's still here.

20:12:29:05 - 20:12:52:13

Lisa: Is there anything you wished you could have accomplished in your time with the ARC of Chester County that maybe you just weren't able to?

Patricia: Well I would have liked to develop the preemie program a little bit more and I would have liked to take this program nationally. You know, like HeadStart is; I think there should be a First Step program all over this country.

20:12:57:18 - 20:14:51:10

Lisa: When you started your work with the ARC of Chester County, you didn't have any real experience with disability; you talked about that. You had your nursing training and it would have been probably easy for you to stick to your basic job description and leave innovation to other folks. Why did you act?

Patricia: Well, because I'm a mother. I think that was the most important thing. It's hard to be a mother. Does anybody really realize how hard it is to be a mother until you get to be one? And when I saw the mothers and I saw the need I, you know, it just seems like you have to try. You know there was one thing that was very important that I have not said here, that I never went into the infant program with any parent with the idea that we were curing your child, okay. That was not the purpose, the intent. It was not even on the radar screen. The idea was to help with a problem. If we could take that problem and break it down into small parts and make it work better but the infant program was never put out to be a cure for developmental disabilities. However it does mean early intervention, does mean there is more hope that the outcome is going to be better and that's what we were striving for. That's the one thing.

20:14:53:11 - 20:15:55:16

Lisa: Pat, do you think it's important that people who are outside of the disability community or would consider themselves as not affected by disability to take a more active role in supporting their friends, neighbors, family members who have children with disabilities?

Patricia: Yes, and that is certainly apparent today. I mean how many of our children go to school with children who have disabilities now? That did not happen 40 years ago and that's important because you begin to have a community that accepts those that are different rather than trying to change those that are different to be more like the normal so we're a more diverse society now than we were and that's good and that's the way it should be.

20:15:57:23 - 20:18:05:29

Lisa: Though today even though we are more diverse, hopefully more inclusive, there are still children and families that fall through the cracks either because of disability or poverty or for any number of reasons. Where today do you see the most need for innovation?

Patricia: Well I see absolutely a need in our Department of Public Welfare or whatever it's called now; that they're must be a program like First Step that will go into, let's say just even the home part of it, that will go into the home where there are children that are in crisis and work. To let children die, starve to death, be locked in closets; and those are things that are in today's paper. Also that's not something that happened 50 years ago and it's still going on today. So the need for programs out there and that's where we need to be. We need to... you can't have a social worker have a caseload of 250 or 500 cases and pick up all of these problems. We've got to get in more specifically. That's what we did with the infant program. We came in on a specific area. We said there's a need here to get something done when children are younger. Even if it's only in having better head control and that's what we have to do where we have all this poverty and we have identified, it's not even that we have to identify those children, they've all been identified and somebody has a file folder on them some place which shows a file folder doesn't do it. You have to have the people and you have to have the caring and that's where we have to be and I would like to start a program but they won't let me.

20:18:06:13 - 20:18:39:21

Lisa: Is it still possible for one person to make a difference the way you did 40 years ago?

Patricia: Absolutely. So I want whatever student is listening to me right now to understand that there are so many needs out there, and I don't know that what I've done is so important but it was a start, you know? And that's what you have to think about. You have to think about starting it, but start it well so it stays.

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