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Steve Eidelman Talks to AAIDD F.Y.I.

After serving for six years as the Executive Director of The Arc of the United States , a 100,000-person membership organization, Steve Eidelman recently accepted a professorship at the University of Delaware ’s College of Human Services , Education and Public Policy. Eidelman is currently charged with setting up a leadership training program at the University for executives in the non-profit and government sectors serving people with disabilities. We caught up with Eidelman, who has led many a change for persons with intellectual disabilities in his various leadership roles with The Arc, the Kennedy Foundation, the Pennsylvania Department of Public Works and more.  

AAIDD: How does it feel to transition to teaching from running The Arc of the United States?

Eidelman: It is a completely new experience for me. Part of me is going through withdrawal. This is the first time in 30 years where I am not responsible, on a day-to-day basis, for a program or an organization. On the other hand, I now get to devote serious attention to an issue which has concerned me for a long time—the development of future leaders in our field. I feel as if I have been given an opportunity to focus on something I believe in, without many of the distractions that go hand-in-hand with managing the day-to-day operations and direction of a major organization.

AAIDD: As you mention, one major area of your focus these days is leadership development for the intellectual disability field. Two-thirds of the CEOs and Executive Directors in the field are set to retire in the next decade. How did we get here and how are your efforts addressing this issue?

Eidelman: We got here because, looking at our field, a huge growth took place beginning in the 1970’s. That generation (my generation) got into the field in part due to the outrage over conditions in large institutions and, in part, as a reaction to what was happening socially and politically in the United States in the late 1960s and early 1970s. For many of us, entering this field was part civil rights, part personal rebellion, and part an interest in directly affecting the lives of people who had long been poorly treated in our country.

In terms of what we are doing at the University of Delaware, we are working in collaboration with the American Association on Intellectual and Developmental Disabilities (AAIDD), The American Network of Community Options and Resources (ANCOR), the National Association for State Directors in Developmental Disabilities (NASDDDS), The Association on University Centers on Developmental Disabilities (AUCD), and the Human Services Research Institute (HSRI) to offer a variety of short-term, intensive leadership development experiences, an on-line certificate program, a master’s degree in public administration with a specialization on community-based leadership in intellectual and developmental disabilities, as well as research and technical assistance.

AAIDD: It is clear we need more of younger people, who will be trained as future leaders in the intellectual disability field. Why should younger professionals get involved in the intellectual disability field—why choose this career path as opposed to many others available to them? Also, what advice would you give to someone who has committed to working in this field and has just started out?

Eidelman: This is a time of great opportunity for young professionals. There will be enormous opportunities in organizations providing services and supports, advocacy, or funding and oversight as the current generation of organizational leaders begins to step down. In addition, as we move from facility and program-based efforts to individually-designed and person-controlled initiatives, the opportunity to exercise leadership in helping put those transitions into place is enormous. Despite the rhetoric, we have not, on a large scale, figured this out completely, though I think it is within our grasp. So this field offers a terrific opportunity to make a contribution and the upward mobility within organizations to do so.

Also, I regularly advise people to have a variety of experiences early in their career, not to get pigeonholed into one place and doing one thing. The lives of people with intellectual and developmental disabilities, their families, and their communities transcend any one approach or area of emphasis. To understand how to move systems and organizations forward requires understanding how an intellectual disability affects people’s lives and how to help those people get the lives they want in the context of their community and family.

AAIDD: In a recent speech, you pointed out that one issue to overcome in the intellectual disability field is to move from supply-centered systems to demand-centered systems. It appears to me that you are referring to considering a person with an intellectual disability just like any other consumer whose needs have to be met, as opposed to having to provide them with services because they have a disability. Can you elaborate?

Eidelman: While I am not a big fan of calling people consumers, I do support a modified, market-based approach. People with an intellectual or developmental disability and those who care about them are capable of determining their wants and needs. We need to put the systems in place to fulfill how those wants and needs. It is a long way from providing an allocation to an organization to fill “slots” as is still commonplace in most places. It is about having the people who need the supports controlling how, when, and by whom they are provided. I have seen throughout the course of my career, well meaning professionals and organizations offering people what they think they need, regardless of what people really want. The challenge for the next generation of professionals will be to bring their training and talents to helping people get what they want, not just what we think they might need, or what we currently have to offer.

AAIDD: Do you think that the Supports Intensity Scale developed by AAIDD is taking us in the direction of building a demand-centered system? As you know, SIS is meant to highlight the needs, not deficits of a person with a disability so that services and supports can be planned accordingly.

Eidelman: Yes. The SIS moves the field forward by leap and bounds. The people who developed it “get it” and have put in place a system that works. I recommend it to policymakers and advocacy groups whenever I speak to them.

AAIDD: At a recent conference, a parent, also a professional in the field exclaimed, “I don’t want my child to go through another assessment, I want something that recognizes the gifts and talents of my child.” Comments?

Eidelman: Whether we call it person-centered planning, essential lifestyle planning, PATH, or by some other name, we have the tools to do what this parent/professional is asking. So long as there are public funds involved, we will need some tools to measure what is needed and wanted, and what is provided. But so many assessments are done for eligibility rather than to help the person get the life they want. That being said, helping people move forward in their lives is often the result of good ideas, a plan to put those ideas into place, and for professionals, a decent assessment is a beginning.

AAIDD: You have led a 100,000-member organization that works for families of persons with intellectual disabilities. What lessons did you learn from this experience that can collectively benefit the different stakeholders in this field—families, providers, educators, policy makers or even someone just entering the field?

Eidelman: For me, families, and people with intellectual and developmental disabilities are the source of strength and inspiration. We can talk all day about what should be done, what is possible, how much progress we have made, etc. But, at the end of the day, the best information about what is real comes from families and people with intellectual and developmental disabilities. As a field, we have gotten a lot better at listening to people and understanding what they want and need, but we are not “there” yet. The new generation of professionals does not need to unlearn many bad habits and, I suspect, will be “there” sooner.

AAIDD: Medicaid is the lifeline of people with disabilities for health services. However, we hear about funding cuts all the time. What is it that our leaders don’t get?

Eidelman: Medicaid is the only open-ended entitlement program we have for providing supports and services for people with disabilities, so we need to understand it, nurture it, and work continuously to improve it. We have nothing at hand to replace it, and there does not appear to be anything on the horizon that could do so. Further, Medicaid was not designed, originally, to do what we are now asking it to do—offer individually designed and controlled, formal and informal supports in addition to primary and acute health care. While there are always talk of individual cuts, the expenditure from Medicaid continues to grow, and Medicaid is now the largest part of most state budgets. As a field, we need to protect, improve and nurture Medicaid, in concert with many other groups interested in the program.

AAIDD: What should we focus our energies on with the remaining term of the current administration and what should we prepare to do differently from an advocacy perspective if we get a new orientation in the next elections?

Eidelman: This administration has not been good for people with intellectual and developmental disabilities. We have seen programs eliminated or cut, non-inspirational people put in positions of great power, and rights challenged through actions of the Department of Justice and the appointment of judges. Regardless of what happens in the new Congress or the next administration, we must, as individuals and as members of AAIDD, become more politically active, on a continuous basis. All members should be in regular contact with their members of Congress, and we as an association must educate our membership, and the public, about the issues facing people with intellectual and developmental disabilities, and the professionals who work with them. We can do this based on our ability to analyze issues and present the best current research and policy analysis has to offer in support of the positions we take and the actions we seek. I always remind people of what Justin Dart said, ”Be involved in politics as if your life depends on it….because it does.” He was right then and the words are right today. The new professional cannot be content merely to practice. S/he needs to be involved in the political process based on the special knowledge s/he possesses and the desire to improve the lives of people with intellectual and developmental disabilities and their families.

AAIDD: You have been involved closely with deinstitutionalization efforts worldwide. In a recent interview, you have pointed out that the World Bank is funding institutions in Romania. What is it that makes some stakeholders see things so differently from advocates within the disability community?

Eidelman: The World Bank is responding to requests of countries for development, without a values base beyond an economic analysis. They share the same beliefs many do about people with intellectual and developmental disabilities. They see the disability and respond with buildings and programs, rather than seeing what people want and need. There is nothing magical about those buildings, either in Romania or in the United States that makes them necessary. It is about political will combined with self and family advocacy and professional practice to rid ourselves of them worldwide. New Zealand has just closed its last institution. More states in the US are moving in that direction while others are re-building old ones or building new ones. As professional leaders in the field, we cannot let it happen or be associated with this practice.

AAIDD: The United States has made some giant strides in the past few decades in leading major deinstitutionalization efforts. What would you make of our own federal policy that still has a bias towards congregate settings?

Eidelman: It is all about leadership. Yes, there is a bias but there is not a requirement to institutionalize people. A recent court case in Colorado strengthened that position. The need for institutions no longer exists. We know how to support each person in the community and we know that people do better in small community based settings. Given that, the role of the professional is to apply the research and the knowledge contained within to advocate for elimination of institutions and the development of services and supports for each person.

AAIDD: You have worked on international programs at The Arc as well as during your years at the Kennedy Foundation. We here in the U.S. may tend to get a little complacent in general when it comes to awareness of the outside world. How important is it in our field to stay connected to our international counterparts? What can an association such as the AAIDD do to increase its international presence?

Eidelman: It is very important in our global world to stay connected. The AAIDD can serve as a filter, providing us with information from around the world and taking out some of the “noise” and volume inherent in staying atop events and findings worldwide. While we are not in the same position as large businesses, we are professionals practicing based on knowledge from both within and outside our borders.

AAIDDD: The AAMR name change to AAIDD—any comments on its impact? Any other thoughts you’d like to convey to our readers?

Eidelman: I am glad we did it. It shows respect for people with the disability and it expands our horizons by incorporating the term developmental disabilities into our name and mission. I also know it will not solve the problems of stigma and discrimination based solely on changing the name. But, it is an important step.

For the readers of AAIDD F.Y.I., I’d say that it is an exciting and challenging time to be a professional in our field. The AAIDD has enormous value and we all must work to convey that value to new professionals, and to our colleagues, so that the future of the association, and of our respective professionals, are both strengthened and moving forward.  

Steve Eidelman can be contacted at sme@udel.edu.