Chapter 7: Kennedy Foundation, National ARC and International Work

22:39:25:27 - 22:41:04:28 Lisa: What was your next step after being Deputy Secretary?

Steve: I got -- again, a headhunter, one of those headhunter calls just at the right time, and I was the Executive Director of the Kennedy Foundation. I actually still hold that title. I only do it a couple days a month. You know Eunice Shriver was sort of the force behind that. She's died two years ago, two and a half years ago, and Senator Kennedy's died. I was actually just there this week, so that gave me a chance -- that was a tough job as well. I think I was there almost five years longer than anybody else in the history of the foundation, but again, a person who was an ethical force of nature, and I learned more from her about politics in Washington than I could have learned in several graduate degrees, and she was part of permanent Washington, and respected by both sides of the aisle on the Hill. And so that sort of taught me about that, and The ARC sort of followed after that, and that was a chance to do things both in Washington and nationally that was pretty exciting. And that was a job of changing an organization somewhat. Now similar to Everyday Lives, how do you get an organization focused that I think had gone adrift? Lots of really good people, but was adrift, and was in Arlington, Texas, which -- I lived there for a year. I commuted for a year from Washington to Arlington, and finally got it moved, and now it's finally all together in Washington, D.C., all the public policy people, the office staff are all in one place, on K street in Washington. But that moved in 1999 in December, and it took 12 years to accomplish that.

22:41:05:21 - 22:44:27:18 Lisa: Seems like it's in its rightful place.

Steve: I think it is. I think they're doing good work and promising work and expansive work, and so -- and along the way I left the The ARC and became president of AAIDD. I had been a member since I was a graduate student. My first day as a graduate student at Kennedy Institute, they handed me an AAID -- then it was called AAIDD -- brochure, and said you should join this as a student, and a copy of the original President's Panel on Mental Retardation Report, and said you should read this, and I'm trying to remember the third thing. The President's Panel thing was called the National Action to Combat Mental Retardation. That was the language at the time, you know, from the original President's Panel, and the third thing was the normalization book that had just come out, and they said, read this, and it certainly changed my conception. I mean, I knew a little bit about disability from policy classes I had taken, but I mean a smidgeon, and it's wow, there's a whole world out here, and the world is changing, and then after my internship, they said we've got this federal grant to work on deinstitutionalization, to get people out of a place called Rosewood, which is now closed, outside of Baltimore, and I actually had been there in high school, as a delivery boy for a drugstore that my father owned, and we used to deliver things to that institution, the staff that lived on the grounds. So all of that sort of came full circle, and the next thing for me has always sort of been there when I was ready, this position at the university came about, and I always thought I wanted to be a college professor but knew that it couldn't just be a regular thing, and the University of Delaware has this wonderful system for people who do public service, that you look at and evaluated differently than people who do pure research, and so I'm a full professor with an endowed chair, which comes with all sorts of benefits, in a place that's very supportive, and I love working with students. It's a whole thing that I never thought I would like, and I teach an undergraduate class that is about families and public policy, not just disability, and I do that on purpose because I work disability and aging issues into it because I think it's important for students to know that. And then I teach a graduate class. And then we started -- really decided to leave The ARC when -- it was in a meeting, when we did the first Alliance for Full Participation. We're all sitting around one day trying to plan that, and it was somebody's birthday, I think Doreen Croser, who was in AAMR then, and realized that I was the youngest person in the room. I said oh, this isn't good, and started doing some research on what was happening in the nonprofit world and the government and realized leadership's about to change, pretty dramatically over the next decade. And then the thing in Delaware came up, and when I had my interview, I said I want to do this leadership development stuff, and so started this leadership consortium thing, just based on personal relationships, and we're about to have the 14th leadership class come in, in January, and Nancy Weiss came from Tash to help us do it, and it's been fascinating. And then some international stuff took off from there, and I could probably be out of the country for two weeks every month from now on, but that's not how I want to live my life, so --

22:44:51:28 - 22:46:01:12 Lisa: You're working with emerging leaders, at Delaware Leadership Institute, and you've worked with very established leaders. You talked about (inaudible) Kennedy really taking you and teaching you about policy, I mean in government. So what is it that you think makes someone a leader?

Steve:I think it's a combination of having a vision, understanding what the field is, and then doing something about that vision. It's not just saying this is what should be, but then taking action to do something about that, and there are lots of different ways to take action. Some people do it through law, legal means, some people do it through research and disseminating research. Some people do it by changing practice, some people do it by state government, and then local governments. There are lots of different places to exercise leadership, but it's really about I think having a vision, communicating that vision, and then doing something about it, motivating others to act, and not just acting by yourself. Because you can't really be a leader without followers. I think the quote is from Warren Bennis, who's sort of a famous researcher. He says, the only person who practices leadership by themselves is psychotic.

22:46:05:00 - 22:47:58:00 Lisa: Once again, I'm sure it's getting annoying by now, but I'm going to quote you to you.

Steve: I want to know where you found all these --

Lisa: Oh, I'll tell you later, I'll tell you. I've been digging. This was on a blog site, so this was fairly recent: Though we have so much that still needs improving, with all the exciting new ideas and approaches that surface nearly daily, there's calls worldwide for hope and optimism, and yet here we are in Pennsylvania, facing some of the largest cuts we've faced in many a time. So why are you feeling so optimistic?

Steve: Well, if you read the words in the United Nations Convention on the Rights of People with Disabilities, they're pretty uplifting. So here we have a world body. We said this, over 100 countries have ratified it. Not us, yet. We've signed it but not ratified it. I do a fair amount of stuff in Eastern Europe and I see people trying to get people out of institutions -- very reminiscent of the States in the '70s and the '80s, and trying to support families. I was just in Colombia, and saw some things that disgusted me, and some things that were incredibly wonderful. Probably one of the best early childhood programs, inclusive programs, I've ever seen. Families really struggling with, all right, how do we get our son and daughter as a young adult to do something that means something to them? The words around person-centered planning, self-determination, individualized control, are all coming. I wouldn't confuse the situation in Pennsylvania, which is mismanagement and bad decisions, by the prior administration, with lack of hope. I mean, it's a budget crisis and it's going to harm some people. There's no question about it. But that's a management issue. Nobody's saying people -- nobody's saying let's change the law to say people with disabilities should be reinstitutionalized. Even if that happens to some people, I think that'll be the intent, that'll be a really unfortunate byproduct of this bad policy decision and bad practice decision.

22:47:58:08 - 22:49:54:13 Lisa: What would you say to families and self advocates who find themselves faced with this possibility?

Steve: Florence Kennedy was a civil rights advocate in the Martin Luther King era, and her sort of famous saying was, don't agonize, organize. And I think they've got to be together and focused, and be all over the legislature, and say, look, this was a mistake. Somebody made mistakes, but don't take it out on the people who are supposed to benefit from the program. Stabilize it somehow, and even if the program takes two or three years to stabilize and doesn't get new resources, cuts of the magnitude they're talking about, people are going to die. Horrible things are going to happen to some people, and I don't think intentionally or deliberately, but most nonprofits are fairly tightly leveraged. I mean, some of them have got ample resources and have done that well, but it's mostly fixed assets like real estate. They don't have a lot of cash. Some have -- people raised a lot of money in the community, but that doesn't meant the system's not fragile. If you look at how the system has grown over the last 25 years, every year for existing operating -- the people in the retail industry have this concept called same store sales. They go to your Gap and say, well last year this outlet sold X dollars, and this year it was X dollars plus three percent, and if you look at programs that were started five or ten years ago in Pennsylvania, they've gotten a one or a two percent increase every year in their budget, but costs have gone up three or four or five percent, and so eventually that starts eating away, and mostly eats away at staff issues -- what you pay staff, what you pay to train staff, the kinds of people you can hire. So the system's a lot more fragile than I think people suspect, and what's going to happen when a provider goes bankrupt? Who's going to take over and support people? You're going to then have these mega providers, and you'll be like the hospital field, where they own six hospitals, and what happened to any one patient, even though their standards and professional codes of conduct is less important than sort of the bottom line.

22:49:55:23 - 22:51:01:26 Lisa: Given everything that you've done professionally, to avoid those situations, what does it do to you to see some of this coming full circle, some of these (inaudible)?

Steve: Someone sent me some of the stuff from Pennsylvania over the weekend and I lost sleep. What's going to happen -- said the order of magnitude's $100 to $200 million. One provider I talked to over the weekend, you know, had gotten a half a million dollar cut already on a $40 million base. That's not a huge amount, but was looking at another three and a half million, which is a huge amount. Again, inflation may be low, but costs are still going up. And so if you have declining revenue and increasing cost, there are only so many efficiencies you can ride out. You can ride out some the first year, but what happens the second year, if you have that lower base? So I think it's up to government now to fix -- it doesn't matter that it was the last guys in office who made this mistake, it's up to the guys now in office to fix it.

22:51:03:19 - 22:52:01:03 Lisa: Steve, thank you. Is there anything that you'd like to talk about that we haven't mentioned?

Steve: Interesting. No, I don't think so. I mean, I think I've been lucky. I've had the opportunity to work with interesting people and do interesting work, and I sort of say that now to students: find something you love, and it may not be the first job you get or the second, but find something you love, and try to do it as well as you can do it, and balance that thing you love with the personal life, because (inaudible) that way as well, that without having a stable and balanced personal life, you've got nothing. So that's it.