Chapter 7: Involvement with PATH (People Acting to Help)

13:29:14:27 - 13:32:14:00

Lisa: Nancy, you mention your agency, and so this seems like a good segueway to talk a little bit about your involvement with PATH over the years.

Nancy: Yeah.

Lisa: It is important to you. I know that you started out, as you had said, when Robin was eighteen, looking for supports and services. In I think 1977, you became a member of the PATH board?

Nancy: Yes, that's when I decided I wasn't subversive, and I learned -- I got on the board and learned about the system, and had to keep my -- kept my mouth shut and listened. It was a different system at that time, completely different system.

And even from the county level, it was the county administrator who thought that it was his responsibility to send money back instead of using it as best he could to provide services. He thought it was his responsibility to send money back to the state, to save money that way, which boggles the mind. But over the years it has changed, and the people there are excellent, and cared very deeply about what they're doing, and there's always been a good rapport with providers.

Our board is made up of community people. Some of them are family members for behavior health. Some there are family members with children with intellectual disability. Some of them are there because they care, and so it has changed over the years. In fact, right now, the board that we have is the best one I've ever been involved with. I've been re-elected -- I've been chairperson of the board for about 27 or 28 years, I forget how many. Nobody seems to want to take over, you know, so they still support me in a more limited capacity than I can do at this time.

But -- and most boards, we've always encouraged boards, for families to get on the board of directors of an agency, because they give a different viewpoint, because they're recipients of the services that are supposed to be provided, and they can give invaluable information about the impact of the services or the lack of services, or the people who are providing the services.

And from our own agency, we've always expected board people to be part of two committees. One is a program committee, and one is being on the administrative committee. So you know where the money's coming from, how the money's being spent. So it's one thing to be on a program committee where you are asking for all kinds of services, but it's another thing to understand where the money's coming from, how it's being spent, and making the most of it that you follow your mission, and I'm very proud of that.

13:32:14:00 - 13:35:56:26

Lisa: Nancy, did this seem like a big shift for you, to suddenly be part of an organization, and to feel heard, as opposed to when Robin was very young and --

Nancy: Yes. First of all, you're learning. You're learning about the whole system, of providers, services from the county level, services from the state level, services from the federal level, and the changes that families have brought the closure, is because families demanding the closure of institutions, like Pennhurst and Embreeville. And not because there was the professionals only who thought that this was the right thing to do; because the institutionalization costs a lot more than living in the community.

And living in the community, as I said -- you know, people now, you walk through a mall and you see families with a child with a disability. Could be physical, could be intellectual disability. It could be both of them together, and they walk and don't have to worry about stares or being unusual, you know, being looked upon as somebody to be a little afraid of, and it's a common thing. You even see it in some advertisements from Wal-Mart does that, and some other organizations do that.

And our own agency has done a video, and I'm sure others have done -- I think Temple has done that also, and with some agencies, some providers, about employment for people with disabilities. We've done that, so that we can -- we've shown it to the Northeast Chamber of Commerce, we've shown it to parents to show what their children can do, their adult children can do with training. We've shown it to different venues as possible, and very proud of it, showing how happy they are and what they're doing, and that the employers are also happy. There are some employers who are very interested in doing this, and we have job coaches who go out, work with the individual to learn their job, and support them, and so -- and they're supported by their co-employees, you know, their peers, and for many people it does work very, very well.

And the thing is that now, I mean, we always took Robbie to the Rodin museum but not to the regular Museum of Art, because you have to be very quiet in there. But going to malls, going to parks, things like that. It's normal to see now people with all kinds of disabilities, and so you're very proud of that, and we don't want to see it go back, where they're shunned and don't have a place, and they're accepted, which is -- one time I was in a mall with Robin, and somebody came over to her and asked if she could help them. And I said, "no she doesn't work here, she's with me".

So I was very proud of that, you know, that she didn't look any different. I see that she's not dressed any differently, that she should blend in and look like everybody else. And this is what we do, and the parents now are our force. They want things today. They're not willing to wait maybe as long as we did, but they are a force to be reckoned with, and they should be. They're part of the system and they work well with the county and with the state as much as they can. And that's it.