Chapter 7: National Work and Inspirations

06:27:02:27 - 06:27:36:07 Lisa: Nancy, when you left Pennsylvania, you started working on the federal level. First as Director of Quality Improvement, is that right? For DHHS Center for Medicare and Medicaid services? I think I got that all.

Nancy: CMS. The Center for Medicare and Medicaid Services. I worked there for three years after I left DPW (Department of Public Welfare).

Lisa: And now you direct the National Association of State Directors of Developmental and Disabilities Services.

Nancy: Right.

Lisa: You don't have a short title do you?

Nancy: No, not a short title. All these government related jobs are so long.

06:27:37:12 - 06:28:57:16 Lisa: I'm wondering which of your past lives, past positions, have afforded you the most satisfaction or have given you the opportunity to accomplish the most?

Nancy: Oh, being state director. And everybody who's ever been a director in any state will tell you it's the best job they ever had. It's incredibly satisfying. Every moment of the day matters. At the federal level you're so removed from constituencies and so insulated from them, and no matter what you do it was difficult to see the direct impact on people. I mean it's there. You write a policy, or you affix a piece of legislation, you do affect people's lives and there's some satisfaction in that. But in the state director's job in any state, every single day, everything you do matters, a lot. Um, every decision you make, every meeting you're at, you have the power to make people's lives better and it's thrilling making the effort. I mean it keeps you on our toes, it's an incredible challenge and it's so worthy and motivating that when you succeed in doing something and can see it the satisfaction is just terrific. It feels really good.

06:28:58:11 - 06:30:02:27 Lisa: Who or what have been the greatest inspirations for you? Either professionally or personally?

Nancy: Oh, wow. Well, Kennedy. John F. Kennedy. Um, Miles Horton. Whom I don't know but whom I've read. My best friend, Beth Barol from whom I've learned almost everything about relating to other people, how to relate to other people. And I would say certainly Wolfensburger and that little crowd of folks who challenged fifty years of thinking and exposed all the prejudice of the past and the horrors of the past and I think righted the world for people with disabilities. I know I'm leaving out some great people but it's what comes to my mind this moment.

06:30:04:26 - 06:31:58:21 Lisa: What would you like to accomplish still? Either professionally or personally?

Nancy: Well. Um, there are two things that bother me a lot about - that affect people particularly with developmental disabilities. One is the level of abuse that goes pretty much unaddressed. I think the national ARC has a little bit of an initiative around this but it's a big, dirty, public secret. We all know the rates are 80-90 percent. We don't talk about it. If it were any other population we'd have a big national campaign like domestic violence or something, and so I'm very bothered by that and I'd like to do something about that. And the other is the constant discovery of Do Not Resuscitate orders in people's records and people's files. Just last week I read an article the CDC wrote, Center for Disease Control wrote, about a children's institution in state and the focus was influenza and vaccines and how rapidly it spreads and why you should vaccinate and talked in the article was just a mention that eleven of the thirteen children that died had Do Not Resuscitate orders on their files and they weren't terminally ill. And I think those things rot society and our culture and obviously are very dangerous for people with disabilities and I'd like to find a way to expose those and do something about those but I'm not sure how.

06:32:00:05 - 06:36:03:23 Lisa: Given all the cutbacks, state and federal level, that will absolutely affect people with disabilities and families what is your kind of current mood?

Nancy: We have a lot of money in our system. The system for people with intellectual disabilities is by far the best funded system in the country and our population with the most funding, and I don't think we spend it really well. I don't support cutbacks but we still have 30 thousand people living in institutions at a hundred and some thousand dollars a year. We have some states that have a lot of private institutions. We've got - we're paying 25 thousand dollars a year for people to go to sheltered workshops. I really, really believe that if we, I really believe that we could reconfigure the money to do better for more people. Um, and I think that, I think that we have, for the next two decades the challenge is going to be how to really support families. We're going into a couple of decades where the baby boomers are - I think in twenty years the baby boomers, 25 - 20 percent of the population will be over 65. Baby boomers are joining social security at the rate of ten thousand people a day and so the significance of that is older people need assistance and so the demand for assistance in the next couple of decades is going to grow significantly just because they're aging. And so our capacity to continue to expand 24 hour residential services is pretty much dead now. The states aren't expanding now, and we have waiting lists. And so what I believe to be true, and actually what we're educating the state directors about is if people aren't going to be abandoned with their families and feel alone, then we need to retool our systems to really support families. To support them so well that even if an out of home placement's available they say never mind, this is really good. And that level of support is more than we're used to giving, although it costs a lot less than a group home. We don't know how to do it. I don't think in systems we relate to families very well, at all. And I think it's because we still all have institutions in our DNA. I mean, most people managing this system grew up like I did in the early '70s in the system and my roots are in institutions that literally told families, do not - leave your child here, do not visit your child for six months 'til we break the bonds. And while I never said those words to any parent, I worked in a facility that behaved that way where the parents came every other weekend to the front door. Never saw where their children lived, never saw who their children were with. And so we kept parents at bay and I think we still do. I don't think we know how to partner with families. I don't think we know how to collaborate with families and share the responsibility with them. We like to give them services. We like to drop some services like personal care but we still leave them isolated, uninformed, and alone in worrying about the future. We don't do financial planning with them. We don't do long-term succession planning with family members. We leave them to suffer with all the worries about the future when it's gonna be our responsibility, 'cause if they don't figure it will be our responsibility. So I think our systems need to retool entirely and focus on supporting families and getting people real jobs. And over the next couple of decades that's the challenge. And if we don't learn how to do it really well the outcomes won't be very good. But if we do learn how to do it well, I think people will have a good life even though we're in economic straits.

06:36:04:25 - 06:35:11:24 Lisa: Thank you. That's all that I had for today. I don't know if there's anything that you care to add or that you think we missed.

Nancy: Thank you.

Lisa: Thank you so much.