 Ableton On Air is sponsored by Green Mountain Support Services, empowering people with disabilities to be home in the community. Washington County Mental Health, where hope and support comes together. Media sponsors for Ableton On Air include Park Chester Times, Muslim Community Report, WWW, This Is The Bronx.info, Associated Press Media Editors, New York Parrot Online Newspaper, U.S. Press Corps, Domestic and International, Anchor FM, and Spotify. Partners for Ableton On Air include Jihad, New York, and New England, where everyone belongs, the Orthodox Union, the Vermont Division for the Blind and Visually Impaired, the Vermont Association for the Blind and Visually Impaired, the Montpelier Sustainable Coalition, Central Vermont Habitat for Humanity. Ableton On Air has been seen in the following publications, Park Chester Times, New York Parrot Online Newspaper, Muslim Community Report, WWW, This Is The Bronx.info, and www.h.com. Ableton On Air is a member of the National Academy for Television Arts and Sciences, Boston, New England Chapter. Welcome to this edition of Ableton On Air, the one and only program that focuses on the needs, concerns, and achievements of the differently able. I've always been your host Lauren Seiler. On this edition, before we get to our important edition of the second part to the Kennedys and their work, we would like to say thank you to our sponsors, Washington County Mental Health, Green Mountain Support Services, and many others, including the partnership from the Association for the Blind and Vermont, the Division for the Blind of Vermont, and many, many others. We would like to welcome Dr. Herbert Cohen of the Kennedy Center. Dr. Cohen for many years has been a foremost leader in pediatrics and children with special needs. Welcome, Dr. Cohen, to Ableton On Air. Okay. Dr. Cohen, could you tell us a little bit of your, well, a lot of your work and let's start there. What has been your work in the field of pediatrics and working with special needs for many years? Well, I came to Albin Einstein Medical School under the mentorship of Dr. Larix Taft, who established our program in 1956. And I came there as actually a fellow of his from 1962 to 1964. And I stayed, eventually became the assistant director and then became the director of the sector, which I did until about 12 years ago when I became an American director. And I've continued to teach and until a year and a half ago, see patients of my own and follow them over the years. So I have been a, became a specialist in developmental pediatrics, which includes taking care of children, adolescents, and some adults with developmental disabilities. Okay. So I became a specialist in the field beginning in 1962, really, and then continuing on for the rest of my career until the current time. I'm now an emeritus professor and I am semi-retired. I still give some lectures, but I've not done any hands-on work with any patients for the past year and a half. Okay. How, how important is having a doctor or a specialist dealing with special needs? You know, because, you know, special needs is a field that is extremely important. So how really important is it to, to get services, especially if you're a child or a young adult with special needs? Well, I have to say that when I first came, we had a small group of professionals, because I learned over the years that the, the pediatrician or developmental condition plays a significant role in dealing with the medical needs of children, also in diagnosing what the problem may be. And, but very importantly in our field, we work as part of a team. And though we may have a leadership role, depending on how much trading and experience we have, we work with psychologists and social workers and occupational and physical therapists and speech pathologists and other people in the field, nutrition, nursing. We've had a very large team that we have worked with over the years. And I consider myself a member of that team, but hopefully an important member of that team in order to provide very comprehensive range of services, including diagnostic and treatment services. Okay. Let's talk about the work of the Kennedys and, you know, obviously we know about Rosemary Kennedy, but what was the historical bias at the time of the Kennedys, especially when trying to find services, like talking about 1959, 1960s, especially when trying to find services for children with developmental delays or disabilities? Well, the Kennedys play a very important role when I first came into the field in the early 1960s. There was a limited number of professionals involved with the field. And also there was a very limited number of options for children and for adults with special needs. And it was also a situation in which families are often embarrassed and people will literally be kept in closets and not provide any range of services at all, except maybe some limited special educational services. But the Kennedys fundamental role was to be very open about the fact that they had, the president had a sister, Rosemary, who had developmental problems. We're not exactly sure what her problem was. She's probably had some delays and maybe even on the autistic spectrum, but we weren't even clear about that. But anyway, but at least the Kennedys announced that they had this family member and Rose would come on TV and mother and say, well, we had a child and they'll be understood or told us what to do. And here they were the first family of the country coming out and saying that they had a family member who had significant developmental problems. Now, in addition to that, the Kennedy and really the driving force of the family was really Eunice Shriver. Eunice was the sister who was closest to Rosemary. And Eunice told me over the years that she felt responsible for her sister because she was like her sister's minor, basically, being the sister who was close to her in age. And so Eunice, I think, pushed the family to publicize what the problem was. At any rate, the president organized a panel on mental retardation, as it was called in those days. And that panel consisted of some consumers, but a lot of professionals in education and actually mostly psychiatry. Maybe there was one pediatrician on the group. And what they did was at his charge to them, they came with a series of recommendations, recommendations in order to change or improve the field and the care of people with disabilities. So that led to the passage of Public Law 88-164, which was the Mental Health and Mental Mediation Facilities Development Act. And it had several components. One of those components was to expand the community mental health services because there were psychiatrists who were interested in seeing expansion of that. And supposedly those centers were supposed to take care of people with disabilities, but that part of it really never was very effective. But the other two components and the recommendations, because we had a lot of academics who were on that panel, and they recommended that there were two things that should be done. One was to involve universities and more research into the field. And that led to the founding of what would then originally tend, quote, mental retardation research centers, now the Cold Development Disability Research Centers throughout the country. And one of them actually was the Kennedy Center, where the federal formulas said that you needed to have a matching money of 25% to match with federal money of 75% in order to have one of these centers built. So the Kennedys through their foundation, they just appeased the Kennedy Foundation named after their son who was killed during World War II. And they gave money, seed money to centers around the country, including the one in the Bronx at the eye of an Einstein Medical School. And then there were some other local donors, and then they had to apply and they eventually got 75% of the money to build that research center. Now, there was also another component of the act and that was the, the, the development of disability centers. It was really to promote clinical advancements in the field and change in the field. In fact, 20 of those were awarded, not one, particularly to the one in the Bronx, but around the country, there were 20, including at special education facilities and universities and so on. But what happened was when one of the Bronx was built, Mrs. Shriver said she wanted to make sure that there were people being taken care of, not just researchers, who would be some work as a laboratory, but people who would actually be cared for. And in our case, we had a small clinic that was founded in the neighboring hospital in Jacobi Hospital. And that clinic was called the Children's Evaluation Rehabilitation Center. And what happened was that particular program was moved into the first floor of some potents over a second floor of that research center. And that's how that got started. Later on, the, what was originally called University Facilities for these clinical programs are found, funded by the federal government. They then modified that and said that you could operate one of those programs and get funding for the federal government without building a new building. So we were then in 1964, doesn't they have to be what was then called the University Affiliated Facility, which was then become the University Affiliated Program. And now it's been renamed over the years to be called a university center for education and training in developmental disabilities. So that's a bit of the history of the Kennedy Center started as a research building, but became a large clinical program as well, without reaching to the various components of the community, which I helped develop over the years. I came there, as I said, a fellow, I became the assistant director. And then in 1972 to 74, somewhere in that range, I became the co-director and then director of the, of the University Affiliated Program and Children's Evaluation Rehabilitation Center. And, and just put the word about that, Dr. Taft, who founded the program was a pediatric neurologist who had trained at Boston Children's. Interestingly, Boston Children's had one of the earliest clinics for children with cerebral palsy. And Dr. Taft was very interested and became trained in that. So that when he came to Albert Einstein after the medical school opened and again in 1956, he came, he established a cerebral palsy clinic, which became a pediatric rehab clinic. And then also became what was called the Development Evaluation Clinic for non-physically disabled children. And the two have actually merged to become the Children's Evaluation Rehabilitation Center, which was the program that moved into the Kennedy Center. So the other one, so the other clinic helped other children that weren't disabled, correct? Right. Well, again, we had two components. One was the Development Evaluation Clinic, which was a clinic for diagnosing to a children's problem were, were at the time. And to, and then began expanding to provide a variety of interventions for them. Behavioral interventions and medications were necessary and physical occupational therapy as well as speech therapy. But the other component was this pediatric rehabilitation program. The best majority of children taken care of were children with cerebral palsy, though we did have children muscular dystrophy and spina bifida and, and some children with the, with the variety of other physical problems who also were cared for in their program. Okay. Now, around the same time in the 1960s, Robert Kennedy called Willowbrook a snake pit. Did you have any, did you have any take or did you have any thing, how can I word this? Did you, did you have anything to do with either helping with pediatrics at Willowbrook during that time? And if you did, how, how was pediatrics during the 1960s, you know, in terms of, you know, the treatment of people with disabilities and how, how has it evolved since then? Obviously it's gotten better, but. A bit of a lot of changes. And there was some early pediatricians like Dr. Taft and there was a one in Connecticut who was connected actually to Yale and a few others, Dr. Cook at Johns Hopkins, who became interested in, in, in the care of children with special needs. But the pediatricians were not leaders at that time in the field. Unfortunately, it was associated more with mental disability and psychiatry. And Ryan Lodge, a psychiatrist ran these large institutions of people with mental illness, as well as people with quote, mental retardation and intellectual disabilities. So that was the nature of things into the 1960s. I'm aware of families who wound up putting their family member into a place like Willowbrook or Lexworth Village, which was a large facility. We really had no significant connection to, to their facilities at the time. But we were well aware that these places were really very poor and very detectable, very poor care people. They were crowded. There were no services. There were no treatments. And he even went to visit some of these places and saw what was going on. But we don't have the power to change now. I think you're alluding to the fact that not only Robert Kennedy, but also the media got into the whole issue of visiting these places and rather, Rivera made a big program about that and showing how poor and awful these places were. Well, I have to say that, again, they were normally run by psychiatrists, but in New York and in some other places like Nebraska and a few other places around the country, they began to be a movement to try to change things. And from getting more pediatricians involved, getting other medical specialists, other professionals involved. And I actually became an advocate for change. And in 1971, I was approached by the director of the Department of Mental Hygiene was called then, but it was an office of people with mental retardation. It was called in those days. And asked whether I would actually start a state program in the Bronx for people with development disabilities and start taking people out of institutions. So we started a program called Bronx Developmental Services, while I was also still running our clinic and center. And what we started to do was we establish a network of community-based programs and we units in various parts of the Bronx where we were based. And we started to help families keep their own family member in the home with the services that we could find them. And sometimes we just try to help develop them on our own. We've established an apartment living program for people who are high functioning people with developmental problems, including physical disabilities. We work with a bunch of other agencies. You know, it's cerebral palsy and association help with retarded children. And helping them found group of homes. We found them by ourselves, the group home, one of the first ones, state operated ones of the Bronx. And we began to take people out of Willowbrook and actually became a component of what was then a lawsuit to basically change Willowbrook and to start removing people from there. I testified and invited a class action suit about the need for developmental programs and to move people out, but also get substantial services even in places like Willowbrook while the people were living there. But I think a lot of that was promoted first of all by the whole issue of the Kennedys making it, quote, socially acceptable to have a family member with a developmental disability and to try to do something about it. And then the media getting involved with the exposés on places like Willowbrook and Lexworth Village and Penn Hurston, Pennsylvania. And there was a place in Alabama where there was a big lawsuit by a first estate technique to try to bring about change. And the change occurred to advocacy, to legislative change and for the pressure of the media and very, very greatly by the pressure from families. I have to stress the importance of that because of the fact that I was well aware and worked with some very key people who were family members who became leaders and trying to both nationally and locally to get people into the community and get improved the kind of care and services. One little anecdote I'll just tell you to give you an idea of what life was like in those days. I became very friendly with a woman named Elizabeth Boggs. Elizabeth Boggs is actually a member of one of the original members of the panel. She was from New Jersey. She and her husband are both college professors. And she told me the story of when she had a young child who developed some brain damage from probably an infection and cephalopathy of some kind. And she said people would come to their house and say, how could you have a child like this? You're so brilliant. You and your husband, she had a PhD in theoretical chemistry and her husband was a professor. And that really motivated her to want to make changes. So she became the first woman to be ahead of the National Association for Taunted Citizens. She was on various advisory groups that I met her, including the President's Committee on Mental Retidation, which I became Vice Chairman of. Actually through the Shriver's pressure on President Cuada to appoint me. But people like Elizabeth took leadership roles, as did so many of other people, in trying to both the inside the system and outside the system to provide advice and advocacy and develop legislative changes. And then eventually going to the courts to try to assure that there would be better care and services for people with disabilities. Talking about parents and how strong advocacy is. Explain more because, you know, we had Mary Bonsignore and other other parents in the in the developmental disability movement. Explain more about how strong parents were during that time. But why did it take, why weren't things quote unquote, see if I say this right, why weren't things quote unquote fixed right away and then parents had to kind of jump in there? Why did it take, why did it take the work of parents to kind of fix the system? I love Mary Bonsignore. She's one of my favorite consumers. I'll tell you the story of Mary, which is illustrative. Now here you had, you know, you had people like, like, you know, Shriver and you had people like other, educated people, people with good strong connections and politically and otherwise. But there were so many parents that didn't know what to do and how to go about effecting change. And some of them build organizations, a little anecdote to the Association for Help of Retarded Children as it was called in New York City. One parent put an ad in a local newspaper saying, I have a young adult son at home and I've got no help or services for them. Other parents like me, 300 applied to that ad. And they had a meeting and that the founding of the HRC or Leshia for our children in New York City. Now it's interesting you brought up Mary as an example, but when we established the Bronx Developmental Services Program, we had a team of professionals in various regions throughout the Bronx. And in the West Bronx, we had a very activist team leader who was a social worker. And we had another person who you've already met, Joanne Siegel, who I know you've already interviewed who was a very smart and very effective community outreach person. And they established a training program for parents to teach them how to advocate, to show them where they should go, how they should do it, where the legislators are, and so on. And people like Mary, myself and Joanne even showed up who Mayor Giuliani wanted to cut actually funding, limited funding for services in New York City that they were providing for people with intellectual disabilities. And we all showed up and we had a rally outside of City Hall and we had everybody from a rabbi to a minister to parents to myself speaking at that. And eventually the pressure on Mayor Giuliani was that he would not reduce the funding for those services. He promised it to a parent. So it shows you that you need to kind of help people, kind of point them in the right direction in order to learn how the system works and what they can do to try to change it. It's not easy to change. I mean, we've all learned that over the years, you I'm sure know that very well that change doesn't happen very rapidly. It doesn't happen overnight. It does not. And it takes a lot of continuing work, effort, and trying to buttonhole people who can affect change who are in the leadership roles, you know, legislatively or programmatically or in state and the local government or whoever. Now, we have some time left the future of developmental disabilities. I know that there's been, you know, different states work differently. But in terms of, you know, change, how do you see this state of development, the services for developmental disabilities? Well, we talked about the past, we talked about a little bit about the present, but how do you see it in the future? Well, you know, every state is different. And that's a problem. We have a trading program for development of pediatricians at the Kennedy Center. It's a very successful program. And one of our former trainees recently became the commissioner for the Office of People with Development Disabilities in Albany in New York State. And he found there were tremendous obstacles to trying to affect change in the job that he that he had. Among those were people who control the budgets. And also you have people who don't want the institutions closed and people who don't want the kind of services that you want to develop in the community because there was opposition to develop in the community residences. That's less now than it used to be when I first started. It was very It's called it's called NIMBY, not in my backyard. A lot of people don't want people with disabilities living. That's exactly right. I went to community meetings and got roasted people in the community got threatened by people in the community. But there are a lot of there are a lot of interests involved. For example, some of the large agencies want to control what happens in the vision and giving out money. Smaller agencies don't do don't have the same amount of clout to even though they may be local, they may represent the minority groups rather than some of the others. And there's and there's also unions who may, you know, have a vested interest in keeping some of the institutions going. And it varies from state to state. I think one of the driving forces in emptying the institutions by the way is now fiscal. It costs so much to keep an institution running. The last figure I saw that around the country, the average was over $200,000 per year for residents to stay in a facility. As a governor is looking at that and saying, well, maybe I can maybe it's like what's less so I can get out in the community. But putting the community doesn't guarantee you're going to get all the services you need. Is it is it more I'm sorry for interrupting. Is it more to keep someone in an institution versus a group home? That's an interesting question because group home operations are cheap, but they are cheaper in the vast majority of cases in the institutions. But to provide the range of services you need, you really have to spend money to do that. And that includes all the therapies and behavioral dimensions you may need and so on. But it is interesting because under Medicaid you have a program where basically you have the option now of moving somebody into the community. But you have to demonstrate that costs less than it would in the institution. But most of the time you can do that. So I think that the alternatives to social care are certainly there. But do they vary from state to state? Yes, absolutely they do. And as we know there's some states that are fiscally much much tighter and don't have more generous use of Medicaid, which is by the way one of the major ways of funding a lot of the community services, as well as was originally love the institutional care. But not every state is expanded in Medicaid. And we know that that's become political hot potato that some of the more conservative states, they have it. But you know being conservative state doesn't always mean that you can't be progressive. For example in Nebraska they've always had a very aggressive community program development that was led by a couple of leaders, actually physicians in one case as psychiatrists. And in upstate New York another psychiatrist led a development of community programs. But interesting too, another little anecdote. There's a waiver program I just mentioned where you can move people into the community or out of a hospital into care. They started actually in Iowa. There was a woman named Mrs. Beckett and she had a daughter Katie Beckett who was in the hospital and who could not be moved. She was on a respirator, could not be moved in the community because there was no way of paying for it. And she went to a local legislator, a Republican senator who called President Reagan at the time, Reagan at the time. This is in the 1980s and said, you know, I can't take my, you know, told him about the story. And he said, let's change it. And that led to the development of the waiver program, which is the means of taking a girl like Katie out of the hospital and bringing her home with her arm with nursing care or whatever under this waiver program. So if you find the right button to press the right legislator to advocate for you, you get a change, but it's not always easy. Let me just read, you know, we emphasize that. I met a lot of legislators in the Bronx and some were effective and some were not. And I won't go any further to describe some of the problems. Do you find, for example, take the state of Vermont, the state that I'm in, do you find that the smaller the state, the better services the person can get? In terms of developmental disability services? I don't think there's a rule about that. There are certainly some small states that have done well. It's a big state. For example, California has had a very wide range of community services developed over the years by governor and a senator called Lantaman, who said Senator, who had developed this regional service group. And New York also has done well because they very, very, very aggressively used Medicaid to fund their services and be able to expand them. And the most in the New York state's budget is a Medicaid budget. So a lot of states can do well, small states can do well. I think one of the morals of the story, example with the Katie Beckett story was that you can be in a relatively small state where you can access your local legislator, maybe more easily than you can in a larger state, or a regional legislator, or a state senator or whatever, and you may be able to press the right buttons in order to affect change. So I don't think there's a cardinal rule that says a small state or a big state may do better because some are better than others. I think a lot depends on who the legislators and who the governors are. And what their point of view is, and I'll tell you some other anecdotes, I remember I was president of the Association of the University-affiliated Facilities, our centers, whatever they're called now. And we were worried during the Reagan administration, they were going to cut out services. And we met with Assistant Secretary, he was originally from California, he was very conservative, I won't mention her name. But she said, I'm going to eliminate your kind of programs. So we said, but, you know, our programs are national and they're every practically every state now. And said, well, we don't care. So we were able to press the right button. So one of the key people, there was a director of a center in Utah, my name is Marvin Fifield, who happened to be friends with Senator Hatch. And he was on advisory group with Senator Hatch. He was a very conservative Republican legislator. And Moff called Senator Hatch and Senator Hatch said, oh, you know, I know your program is a valuable program. And I'll pick up the phone and call the president. And he did. And right away, no problem, continuing funding. So I mean, you know, there's a tremendous amount of local kinds of things. I went into a legislative office and starting in with a legislator from Illinois, who was head of a important committee in Congress. And I said, what are you here for? I said, well, here because we provide services and our centers provide a lot of services for people with disabilities. He said, you don't have to go any further. I said, I had a brother in law who was intellectually limited. And I know all about the issues and problems. So sometimes if you deal with a knowledgeable person who is a legislator, who is a family member, that also helps get where you want to go. Well, again, we would like to thank you so much for joining us on this edition of Ableton on Air. Happy holidays and thank you so much. Where can people turn if they would like to find out more information on the Kennedy Center? Can you give the website? Well, we have a website. The Kennedy Center has a website. Our Children's Evaluation and Meditation Center has a website. They could find it there. If you look it up, we're in the Bronx. We're affiliated with Albinized Dye Medical School. And we also with Montefiore Medical Center now, which is the parent agency for the clinic. So they could look it up and see the kinds of things that we do. And there are other places around the country that do similarly. But we're proud of what we developed over the years. At one time, we would say we're herming about 8,000 people a year and about 50,000 plus visits. But there are other large centers. And I'm sure there's one in every state now. So there's a program you can look up in your own state, usually federally funded for serving people with disabilities. Anyway, good luck to you, Lawrence. It was nice speaking with you today. Okay. Thank you for joining us on this edition of Abledon on Air. For more information on the Albinized Dye College of Medicine and the Kennedy Center, you can go to www.einsteinmed.edu. That's www.einsteinmed.edu. Thank you, Dr. Herb Gold. Thank you for the good work you're doing. Okay. Thank you and happy holidays. For more information on Albinized Dye College of Medicine and the Kennedy Center, so that's www.einsteinmed.edu. We would like to thank our sponsors, Washington County Mental Health, Green Mountain Support Services, and the partnerships for this program, the partnership with the Roosevelt Kennedy Center and the Albinized Dye College of Medicine, and many other partnerships in Vermont, also including the Association for the Blind and Visually Impaired, the Division for the Blind and Visually Impaired, and many, many, many others. Thank you again, Dr. Cohen, and this puts an end to this edition of Abledon on Air. I'm Lauren Seiler. See you next time. Abledon on Air is sponsored by Green Mountain Support Services, empowering people with disabilities to be home in the community. Washington County Mental Health, where hope and support comes together. Media sponsors for Abledon on Air include Parkchester Times, Muslim Community Report, www.thisisthebronx.info, Associated Press Media Editors, New York Parrot Online Newspaper, U.S. Press Corps, Domestic and International, Anchor FM, and Spotify. Partners for Abledon on Air include Yachad, New York, and New England, where everyone belongs, the Orthodox Union, the Vermont Division for the Blind and Visually Impaired, the Vermont Association for the Blind and Visually Impaired, the Montpelier Sustainable Coalition, Central Vermont Habitat for Humanity. Abledon on Air has been seen in the following publications, Parkchester Times, New York Parrot Online Newspaper, Muslim Community Report, www.thisisthebronx.info, and www.h.com. Abledon on Air is a member of the National Academy for Television Arts and Sciences Boston, New England Chapter.