Steven Eidelman says that we've undersold what people with intellectual disabilities are capable of doing. In this conversation he explains how we can achieve the goal of making sure people with disabilities are fully included in our communities.
Steven Eidelman says that we've undersold what people with intellectual disabilities are capable of doing. In this conversation he explains how we achieve the goal of making sure people with disabilities are fully included in our communities.
Steven is the H. Rodney Sharp Professor of Human Services Policy and Leadership at the University of Delaware. In this role, he focuses on community based and inclusive supports to people with intellectual disabilities and their families, development of leadership in the intellectual and developmental disabilities field, and research on international policy and practice, particularly in Eastern Europe and the former Soviet Union.
Prior to joining the University of Delaware, Steven served as executive director of the Arc of the United States. He is past president of the American Association on intellectual and developmental disabilities, and has twice been honored with the organization's Leadership Award. Steve is also executive director of the Joseph P. Kennedy Jr. Foundation.
About Northeast Arc
Northeast Arc was founded in 1954 by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. By having the courage to challenge professionals who told them their children could not be educated and would not live to become adults, these parents created the systems that enabled them to attend public schools, develop friendships, reside in the neighborhoods of their choice and to earn a paycheck. Over the years, our programs have expanded to support children and adults with a broader range of disabilities, including autism and physical disabilities. Today we serve thousands of people in nearly 190 cities and towns across Massachusetts. The goal of the Northeast Arc is to ensure that children and adults with disabilities are able to live, work, engage in civic life and play in the community. We work toward that goal by offering a wide variety of programs including Autism Services, Day Habilitation, Deaf Services, Early Intervention, Employment Services, Family Support, Personal Care Assistance, Recreation, Residential and Transition Services. Northeast Arc is overseen by a volunteer Board of Directors composed of individuals with disabilities, parents and siblings of people with disabilities, and business and community leaders. Programs are operated by a professional staff led by a Chief Executive Officer with 35 years of experience at the helm of the organization, and are supported by a large volunteer corps.
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Hello, and welcome to All Things Disability, a podcast from Northeast Arc. I'm Jo Ann Simons, the President and CEO of Northeast Arc. Today, I'm thrilled to be joined by Steven Eidelman. Steven is the H. Rodney Sharp Professor of Human Services Policy and Leadership at the University of Delaware.
In this role, he focuses on community based and inclusive supports to people with intellectual disabilities and their families, development of leadership in the intellectual and developmental disabilities field, and research on international policy and practice, particularly in Eastern Europe and the former Soviet Union.
We've undersold what people with intellectual disabilities are capable of doing, and we've got to make certain going forward that we do it in the context of work and the context of learning in the community and the context of supporting their family in their relationships.
Prior to joining the University of Delaware, Steven served as executive director of the Arc of the United States. He is past president of the American Association on intellectual and developmental disabilities, and has twice been honored with the organization's Leadership Award. Steve is also executive director of the Joseph P. Kennedy Jr. Foundation. Steve, thank you so much for joining us today. And how do you manage to do so many things?
When you don't do things well, you get to pile lots of stuff on top of each other. Like you, a good part of your waking hours are spent either thinking about or doing something related to your organization. And this differentiation between it's the end of the business day and waiting until tomorrow, it doesn't exist. You just find yourself doing stuff. So it's been fun.
That's great. Steve, after graduating from college, earned your MSW, and apparently, you thought you were going to become a social worker. At that point in your career, did you anticipate working with people with disabilities? And if not, what developed your interest in this field?
So when I was in social work school, you had to do a one year internship somewhere 30 hours a week, and I was going in a very different direction than disability. And the Dean cornered me one day and said, there's this place over at Johns Hopkins called the Kennedy Institute and they want somebody interested in policy and administration and disability. And I said, well, that's not really my thing. And he said, and they'll pay your tuition in $5,000 stipend.
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So I did my one year there and I ended up staying for six. And you get hooked. Our field is a combination of research, practice, and civil and human rights. And you'll see those things coming together in a lot of places, but they certainly do when you work with people with disabilities and their families.
When you began your career, what did it look like in terms of services and supports for people with intellectual and developmental disabilities?
Well, I'm dating myself, but it was the mid 1970s and we were still-- I was in Maryland, heavily institutionalized. There were some fledgling attempts to get people into group homes, but the group homes were 15, 20 people that were big huge houses. So there wasn't much and there certainly wasn't generous funding from the federal government at that time. It was all dependent upon what the state could do and what the state's leadership could do. And it was not anybody I can look back on and say, God, they got it. Because it was way beyond mid 70s when they got it.
We've come a long way. Let's switch a little bit to your current position at the University of Delaware and what areas you're focused on both as a Professor and Researcher.
So this is my last year at the University. I've been here since 2005. I never thought I would be in an academic setting for that long. And I'm using this last year to cement some relationships in place. We started this thing called the National Leadership Consortium on Developmental Disabilities to focus on practitioners because everybody likes to focus on undergraduate and graduate students.
We decided, let's look at people with 5 or 10 or 15 years experience and help shape their career going forward in terms of their commitment to individualization, to listening to people with disabilities and listening to families. So January 1st, we moved it out of the University to the Council on Quality and leadership in part because a small national non-profit is much more flexible than a big University.
And second, we wanted to maintain control of content, and in the University, you don't necessarily have that. So that's pretty much what I do in my last year. I'm putting some things in place with Special Olympics International. I plan to spend some time with them after I'm done working as a volunteer on a couple of things they're doing around inclusion and inclusive education.
Are you able to talk a little bit more about what's down the road with Special Olympics?
Well, you know Tim Shriver and you know he's got grand plans for things and is very expansive and effusive. And then the rest of us have to run behind and pick up those things. He's got great ideas and amazing ideas. I worked for his mother and I worked with his father, and he was one of those people who inherited the best qualities of both parents.
He has Mrs. Shriver's analytic abilities and Sergeant Shriver's enthusiveness and expansiveness. So I think we're going to look at how can we get countries to commit to inclusion of people with disabilities not as an afterthought, but as part of our overall strategy? And not just in education, but in housing, and employment, and in health care? So it's a big deal and we'll see what comes out of it. I'm cautiously optimistic.
Well, and I'm excited about that. Thinking back on your career, and of course, you've just told us that it's not ending, it's just going to be continuing into actually maybe even a broader way, what have been some of the major milestones of progress that you've seen that some of our listeners may not be aware of?
Well, I think the institutionalization seems like it's old hat, but I was there when the last person moved out of Pennhurst State School and Hospital. I was the Deputy Director of the Department of Public Welfare where it was housed. And to see that we could get everybody, no matter what their disability was, living in a house with one or two other people, nobody more than three, it was almost unimaginable when I started and yet this was only 20 years later.
And I think we made the first step, got people out of places or kept them out. The second step of helping people have full citizenship and participation in society, we're not there yet. There's a movement to resegregate people. This in the post-pandemic stuff. The good news is we figured out how to keep people alive and functioning, and the bad news is the employment situation for people doing direct support, direct support professionals, aren't enough of them. And they don't stay long enough, and yet they're crucial to the whole model we built. So we've got to figure that out. What we can do given their strengths and weaknesses and given the financing of the field.
That's probably our biggest challenge and we're facing it every day and so are families.
Yeah. And I think we're going to see some programs close not due to lack of funding but lack of adequate funding or they can't get staff. I went to a restaurant the other day with a friend for breakfast and we get there and the little sign on the door, sorry, we're not open for breakfast anymore because we can't get enough staff. When I talk to people who operate services directly, they're facing that same kind of thing. OK, we're not going to be able to run this program anymore. We can't get anybody to work. And that's a tough thing.
I've actually recently seen data that has demonstrated the shrinking of our system has actually already begun either in reduced census at existing programs or closure of programs, and the decision by many providers not to expand even when there's an opportunity for--
Yeah.
--someone to do that.
And what do you what do you say to parents? What do you say to people with disabilities who've been waiting 5, 10, 15 years for something and all of a sudden, well, it's going to be another five years. Or you're in this program now, but the program is not going to exist anymore. We've got to figure something out for you. It's unconscionable that we have to do that. But if we don't tell people straight out what's going on, how can it ever change?
I agree. We need to tell people and it's ironic. I mean, that's not probably the right word, but for several decades, we've been told that this day was coming when the baby boomers and the declining birth rates were going to collide and the fact that there would not be enough people to provide services. We depend every day to have somebody pick up our trash, and we want that to happen. And we certainly want people to be taken care of who need these kinds of supports and technology is only going to go so far in bridging that gap.
I want to talk more about you though. You've had a variety of roles before coming to the University of Delaware, and we've talked about a couple of them. But working in state government, the private sector, advocacy organizations like the Arc of the United States, how does all that experience not only inform your academic work, but now the work that's going forward that you're going to do with Special Olympics?
Well, I'm a raging incrementalist. I think we can make changes and move things forward and just keep on building and building on successes of the past and learn from the failures of the past. So I'm not pessimistic, but I'm not overly optimistic either. I think that didn't answer your whole question
That's OK. I think you've given us a little bit of opportunity to hope and to think about the future. Let's talk about employment. You focused a great deal on employment. And let's talk a little bit about why employment is such a critical area of focus for people with disabilities.
Yeah. I think the easy answer is it's what adults in our society do. When you meet somebody for the first time, the first or second question you get asked is what do you do? Where do you work? And people with disabilities have been seen as a group-- we'll put them to one side, people working in mainstream organizations in businesses and government and nonprofits are seen as contributors. It doesn't matter how much they contribute, they're seen in a positive light.
It's also where most of us make friends, where we meet romantic interests, where we meet partners. And if you're in a sheltered workshop or a day program all day long with the only people-- I visited one the other day and the good news was magnificent program doing great stuff with people with significant disabilities.
The bad news is there was nobody there without a disability who wasn't paid to be there. And limits people's social contacts, and we've undersold what people with intellectual disabilities are capable of doing. And we've got to make certain going forward that we do it in the context of work and the context of living in the community and the context of supporting their family and their relationships.
And we're not there yet with work. Our numbers keep on going up and down and up and down. I read an article yesterday in the New York Times. The Wall Street Journal says people with disabilities are doing better in this market because employers are starting to say, maybe this person can do the job that we need done, so.
That's true. We've seen a great opportunity in the last few years here in our work at the Northeast Arc and being able to place people with disabilities into competitive employment while we might have suspected that during COVID, we would have seen a slowdown of that. We've actually seen an increase in the opportunities for people, for just what you've said. And hopefully, we can sustain that interest by employers.
That's the key thing, I think. When we get out of this crisis, when somebody figures out immigration and we can get people from other countries to come again and who do direct support, what's going to happen to those people with disabilities? Are they're going to lose their jobs, are they going to have their hours cut back, or are they going to get their salaries capped? We don't know. We've not been there before, not like this anyhow.
Right. Do you see any other trends in employment?
I see people starting small businesses, sometimes person with a disability sometimes the small businesses is there to employ people with disabilities. People who are more intellectually capable. People on the autism spectrum. There was a place half a mile from my office in Delaware where they're doing coding for major banks and computer programming. And for people with intellectual disabilities, that may or may not be in their future, but there's all sorts of jobs in the local economy that people with disabilities can do. And we just scratched the surface.
It reminds me of an app I just recently saw and that we actually utilize here at the Northeast Arc which gives people who are competitively employed remote supports so that they don't have to depend on an individual to be there to tell them, hey, Steve, you're not doing this right. They can just look at a video of themselves having previously been recorded doing the job the way it's supposed to be done. Yeah. And so we're excited about-- excited about continuing to explore that. We're using it successfully and going to do more of that.
yeah I mean, one of the things they found during the pandemic when people had to stay home is that people who we never thought were capable could use an iPad or a smartphone and communicate with their family, with their friends, with their staff, and it's like wow, we didn't know you could do that. And I think the question we have to ask myself is, why didn't we know? Why didn't we give people those opportunities and see what they could do or what they can't do?
To that point, I loved-- yesterday, I walked around in one of our day programs, which actually is located in a mall, which addresses the issues of isolation because the people are able to not stay in our program, but go out to a restaurant, do their shopping, have their jobs in this environment, which is exposing a whole lot of people to the capabilities of individuals with disabilities. But what I loved was I saw several folks on their iPhone.
And a few years ago, we would have told them to put their iPhone away, but we tolerate everybody using their iPhone during work, and the same opportunity has to be applied to people with disabilities. So it just looks like we have made some progress in how we value people with disabilities and--
Yeah. And it goes back to the work thing again. Because what is valued in our society, good looks, intelligence, wealth, and work. Our lexicon is filled with words about work. When you come home at the end of the day and you say, oh, I worked so hard today. You're not complaining, you're bragging. You're saying, I did something socially useful today. And I think people with disabilities have figured it out that when you have a job, it's a real wage, you're treated differently than when you're in a day program where you have no job.
Correct. Tell me about the impact of the Kennedy Foundation-- the Joseph P. Kennedy Jr Foundation's impact on our field because I'm not sure that many people are aware of the impact that they have had and continue to have.
It was interesting in that Mr. Shriver, Eunice Kennedy Shriver, worked there full time without getting paid from the 1950s until she died. And use this notoriety and contacts and prestige of the family to attract other people to the field. Some of their initial grants were things like the John F. Kennedy Institute for Handicapped Children at Hopkins and the Kennedy Institute at Vanderbilt. They got prestigious scholars to pay attention to intellectual disabilities when they had not paid attention before.
And they could express through what they did in Special Olympics, which started at the Kennedy Foundation. And they could show the world, look, high value people, movie stars, star athletes, star politicians are willing to come and interact with people with intellectual disabilities. And they did that-- they were a voice in the wilderness in the 50s and 60s. And it wasn't until we had a major movement on education, which they were in part behind, where the general public caught up.
And we love to brag in Massachusetts because Unified Sports was born here and we think that Special Olympics-- so legacy of bringing in athletes with disabilities and athletes without disabilities playing on the same playing field equally has been a game changer for many athletes.
Yeah. When I ask students, how did you get interested in disability? Most of them say either Unified Sports and high school or Best Buddies. Sometimes they say both. And those are both Kennedy family things in a big way. And if given people an opportunity-- people with disabilities an opportunity to interact with their age peers without disabilities is a fun thing. This is not a serious discussion, this is, we're going to go play basketball. And basketball is fun to play having a serious discussion about disincentives to work or discrimination, and those are heavy topics.
We've also found anecdotally that Special Olympics and Best Buddies has the unintended impact of developing social capital for people with disabilities so they don't have to rely on the social capital of people who are paid to be with them or their families. And many have found employment through their connections through Unified Sports or Best Buddies.
And isn't that wonderful?
Yeah. It's a--
Great thing.
So in your role as a professor, now we're going to go back to your current role that you're going to be transitioning from, you've been training future leaders in disability policy. And I've been honored that I've been able to actually attend parts of your disability policy training and was so impacted by the energy, enthusiasm, and intellect of the folks that have chosen to be in our career. What are some of the most important things they need to be able to learn to have impact-- to have the kind of impact that you've had?
They have to learn all about something that's not disability specific, but it's change management. How do you manage change? How do you convey to people, here's what we are, here's where we want to go, here are the steps to get there? And then get people on board with that change. There's always resistance to change in any field on any issue.
But the more we can help people help other people come along, they don't all have to be leaders and it's important to have lots of followers and lots of rank and follow participants. And then the second thing is to give people courage to say this stuff is hard. Managing change and improving lives of people with disabilities, if it was easy, we would have done it already. It's hard, but it's possible. And you have the skills to build a team to make those things happen.
Thank you. I do want to touch on your international policy work because that's something here in the United States many of us are not aware of. We know there's still though many countries where people with disabilities are currently institutionalized. Are there particular countries where we're seeing progress?
I think we're-- I'm not up to date on what's been going on since the pandemic, but I think we're seeing progress in a lot of places and we're seeing two steps backwards in other places. I remember going to an institution in Croatia outside of Zagreb, and it looked the US in the 50s and 60s. It wasn't absolutely horrible, but it was horrible.
There was a plan to get it closed, get everybody moving into the community, and all sorts of political machinations happen and that plan was put on hold. That whole country has had the similar thing. Other Eastern European countries and former Soviet Union countries have had the same thing. We have institutions, it's a model they know. There's corruption there because it supports the talent of the community that it's in.
I'm doing some work in Israel and I think the Israelis have got the tiger by the tail in terms of helping people leave institutions and they've got a big number set out there and the government has acknowledged it and agreed to fund it. So we'll see what happens there over the next couple of years. It's counterintuitive to lots of people.
And unless you have true believers and unless we have people like Jo Anne Simons who are out there who get this at the gut level, you've got to bring people along. And if you had no exposure to people with disabilities and no exposure to progressive thought, how do you get there? It's not magic, but it's a journey to be taken and you've got to have somebody helping you along that journey.
We're really proud that when immigration was not a problem, that we would employ folks from former Soviet Union. And they had never seen people with disabilities walking on the street. And after spending two years with us, they would go back and change their country and need they those drivers.
In Delaware where I work, the people who most needed direct support were from West Africa. So they came with good English skills. And they could come for work, go to community college, which is very inexpensive here, and get a degree, transfer to one of the universities in the state, and all of a sudden it's a win-win. You have people with new college educations and you have people who understand disabilities all mixed together. And it's just a wonderful thing to see.
Well, we're hopeful that we're going to make progress on immigration. I want to end on a positive note, although I think we just did. But at this point in your career, what makes you optimistic about the future of our field?
Well, it's like flowers popping up with snow on top in the spring. There are people who are doing great things, and you can go five minutes away and see things that you go, oh, that's not good. So there's entrepreneurial spirit in the disability field among professionals. And there's a commitment.
It's no longer just a new and exciting adventure, it's a whole established field of practice and programs and policies that people can have influence on, can operate, and have a whole life spent in service to people with intellectual disabilities and their families and their communities. And there's nothing better than when all that stuff comes together.
Well, I want to thank you for this informative conversation. It's been an honor for me because every time that I'm with you or talk to you, I learn something and today was no exception. We want to thank Peabody TV for providing our wonderful recording space. And All Things Disability is made possible through the financial support of the Changing Lives Fund which was created through a gift from Steven Rosenthal. To learn more about Northeast Arc and to find past episodes of this podcast, please visit ne-arc.org.
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