Chapter 5: Everyday Lives
06:13:39:05 - 06:20:39:21 Lisa: Another milestone that happened during your tenure was Everyday Lives.
Lisa: I wondered if you could tell us a little bit about what Everyday Lives is.
Nancy: Well Everyday Lives was another survival effort. In '87 when I came to state government with Steve Eidelman we inherited a kind of advisory committee that was a sort of kitchen cabinet, hand selected by the previous administration a plan, it did not come out of the governor's office, Governor Thornburg's offices came out of department, a plan to build 5,000 ICF/MR a year the next five years. And Steve and I knew instinctively that was a big mistake. And so we were desperate to figure out how to get out of that. And so, we said let's put a planning advisory committee together, but not one that's a kitchen cabinet of hand selected people. Let's reach out, and it's stretching here so we invent something that actually was a very good idea, that we would reach out to all the constituencies, all the provider associations, which there was three, advocacy association, self-advocacy association, the county administers - administrators, and we create a planning advisory committee but we would give them a weighted number of seats. So the county MH/MR administrators, of which there was only one organization, got five seats. But the provider associations only got two. The self-advocates got five seats, and that so that when you sat at the table, the constituencies they represented were more balanced. And we invited them to be on the planning advisory committee with the understanding that their responsibility was to sit there in representation of their constituency, not as individuals. Which placed on them the obligation to bring to the PAC their point of view, speak for, and once things were agreed on or understood, to translate back to their constituencies. It was a kind of United Nations sort of thing. Democratic. And so we took a while to do that. We pulled them all together. And Steve said, 'Before we just act on this old plan, let's talk about - let's make a plan about what we should be doing in the future'. And I think we spent two years doing that. Painful. But it was watershed. We hired facilitators and at the first meeting, this meeting that happened, this retreat that happened one day a month over three months, for the very first time self-advocates were at the table. We never had meetings with self-advocates at the table in equal roles. And the question, and the Everyday Lives booklet walks you through this, what's life like now? What do people want it to be? And so we asked the question, 'What do people want?' It was a simple question: what do people want? We broke up into groups and the answers that came out were really revolutionary because many of us who thought we were forward thinking and progressive expected what would come out are words like 'we need more job coaches', 'we need more recreation'. We thought of the wants in terms of services, and instead what happened, because self-advocates were listened to, we heard things like, 'I don't want to take medication that I don't want', 'I don't want to live with people who hit me', 'I don't want people to make fun of me'. The wants were really devastating. Really devastating. And it sobered everybody up. And then we spent a day saying the question that Guy Caruso and Jerry Kiracofe asked is, "If everything could be the way you'd want it to be, what would it look like?" And we had this paper on the wall. We drew pictures of everything, and it was pictures of going to school and, you know, getting married if you wanted to get married, and having a job, and going to the parks and voting and all that kind of stuff. And one of the dads who was from the ARC whose daughter lived in an institution over his dead body was she ever going leave that institution, he looked at the wall, he said, "Oh my God, that's just the life the rest of us have". And that's how Everyday Lives got named. It's just a life like everybody else. And it really changed everything. We could listen to self-advocates, we could keep their life experiences, it's very person centered, although we didn't have the language back then, and Everyday Lives was the foundation for everything and the first test was not long after that, the Emeryville Settlement Agreement. And when we negotiated the Embreeville Settlement agreement the question is, do we believe in this thing? Because Everyday Lives has, what do people want? Choice, control over their own lives, dignity, there's a list of about seventy things. So we said, shouldn't, if we mean this, shouldn't we build this into the settlement agreement? So we built into the settlement agreement that people would choose where they want to live and who they want to live it. Naively built that into the settlement agreement. And then when it came time to start taking people out, we understood what we'd done. Because up until that point when people left institutions, we gave money to counties and counties decided who was leaving and where they were going and which provider and who they were living with. And now, it started with who wants to go, where do you want to go, and who do you want to live with? Well it takes three, four times longer to do that. All their decisions are inconvenient. People wanted to go home, that we didn't think they remembered. I remember there's a woman who wanted to go live in Dolphin County in Steelton. Who knew she remembered that? And so counties got money based on who wanted to leave and when they wanted to leave, and providers got business based on whether or not consumers chose them. Consumers and their families. So it took a lot longer but it was terrifically wonderful. The people who left Embreeville went, all went all different places. Some went to live with staff who they had lifelong relationships with. Some went back with families. But it was a very, very successful closure and became the foundation, but it's how everybody knew we meant it, because we changed our practices.
About Nancy Thaler
Born: 1949, Kingston, PA
Executive Director, NASDDDS; formerly Director of Quality Improvement, Centers for Medicare and Medicaid Services Disabled and Elderly Health Program Group (2003-2006); past Pennsylvania Deputy Secretary for Mental Retardation (1993-2003)
Community Collaborative, Pennhurst, Self-Advocacy, Everyday Lives, Self-Determination