 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.thisisthebronx.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.thisisthebronx.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 different label. Before we get to our program today, we would like to say special thanks to our sponsors, Green Mountain Support Services, Washington County Mental Health, and many others, including the support of the Association for the Blind and Visually Impaired of Vermont, the Division for the Blind and Visually Impaired of Vermont, Central Vermont Habitat for Humanity, and many others. And also, on today's television program, the support of the Rosef Kennedy Center of the Bronx and the Albert Einstein College of Medicine and Montpelier Medical Center. With us to discuss this important topic of the Rosef Kennedy Center and their work and the work of the Kennedys in the lens of the Kennedy family, we would like to welcome Joanne Siegel, co-director of the Rosef Kennedy Center, part of the Albert Einstein College of Medicine, and she's a licensed social worker in the field of special needs. Welcome, Joanne. Thank you. I'm so pleased to be here today. Okay. Tell me the missions and goals of, tell us the missions and goals of the Rosef Kennedy Center and its work in the Bronx, New York. Sure. The Rosef Kennedy Center for Individuals with Developmental Disabilities was basically established in 1966 with the ground breaking on the grounds of Jacobi Medical Center, and it was part of the Albert Einstein College of Medicine, and today it remains the leader in our work in developmental disabilities. The purpose of the Kennedy Center was actually part of the 1966 legislation that was signed by John F. Kennedy. It was the Developmental Disabilities Services and Facilities Construction Act. With that legislation, monies were set aside for university settings to provide science research, community education, and clinical services for people with, at that time the language was mental retardation. We now use the terminology intellectual disabilities, and we also include developmental disabilities, which is a little broader spectrum of people having certain conditions that appear before the age of 22. Why? I'm sorry. My question, I'm sorry for interrupting. Why was the language different back then versus now? Why was the language, you said mental retardation, why was the language different back then versus what it is now? Okay, so essentially many of the language evolves, okay, language is never stagnant, and the words mental retardation were actually clinical terms that were part of the diagnostic manual for medical conditions. Over the years through advocacy, the terminology has changed, and mainly because of the negative connotation or the negative connections that people have when they use the term mental retardation, it had become over the years a derogatory term, and so people, that are self-advocates, actually spoke up and asked for that terminology to be changed, and so the terminology that we now use today is intellectual disabilities. Not developmental disabilities, it's intellectual, correct? Right, intellectual relates to those individuals who before the age of 22 have a cognitive involvement in terms of a learning difficulty. They also have what's what are called functional issues or difficulties. That means anything related to walking, talking, and self-care, any of those combinations. So it has to be a combination of a cognitive deficit as well as functional deficits. Developmental disabilities is related to a broader spectrum of conditions in which a person doesn't necessarily have a cognitive involvement, but they may have a physical impairment that basically interferes with their functioning. So an example would be cerebral palsy. So a person with cerebral palsy might have difficulty with walking and may use a wheelchair, may or may not, but basically it's an impairment that interferes with some type of life activity, but does not include a necessarily a cognitive issue. Before we get to the real work of the Kennedy Center, tell me a little bit or tell us a little bit about Rosemary Kennedy and the whole reason behind the act that Kennedy signed. Okay. The Kennedy family is quite interesting. Rosemary Kennedy was the third child born to Rosef Kennedy and John Kennedy. And so basically there was an elder son, Joseph, who actually died at the age of 29 in World War II. And the second son was John F. Kennedy, and then there was Rosemary. She was actually the first female within the Kennedy family. And Rosemary at birth had some, had a problem. Her mom, Rose Kennedy, had some difficulties during labor. And as a result, from what people surmise, there were some problems that Rosemary had with having lack of oxygen during the delivery. And so she did have some mild cognitive or learning problems. Okay. And so that was some condition that she experienced throughout her life. The Kennedy family was a very wealthy family, a very well connected family. And the father in that family had ambitions for their, in particular for his sons, to move ahead in terms of politics. And Rosemary unfortunately at the time, and this is, this gets into the issue of stigma and how people at that period of time felt toward individuals with disabilities. And so the father and the mother really kind of kept Rosemary not within the public view. And so she was raised until her school years. She was, she was raised at home, but when she entered school, she entered a number of specialized schools that were residential. And basically, she was not within the family, she was, she was sent away to school. Now what happened when Rosemary entered teenage years and early adulthood, she actually was a very attractive woman. And her dad was concerned about her being involved, maybe with dating and social activities. So unbeknownst to the mother, Rose, the Rose was away at the time. The father, basically, my understanding, contacted a physician who was, was doing some experimental work. It's was it a lobotomy for what I understand? Yes, yes. And so I guess is what he wanted to do. They were concerned that she was going to act out and and have behavioral problems and in particular around sexuality. So he made arrangements for this physician to do surgery. And a lobotomy was performed. And unfortunately, it did not go well. And Rosemary, the end result was that she actually suffered more neurological problems, and really was left much more disabled as a result of the surgery. So from then on, Rosemary lived in residential facilities. And ultimately, she spent the rest of her life in residential schools outside of New York State. And it was only from what I had read, only after the father died, then the family was brought her a little bit more home, but she is subsequently passed away. But getting back to the Rose F. Kennedy Center, the Kennedy Center is named after Rose, the mother, who was a very dedicated woman. And she's a woman who who understood from a parent perspective what it was to have a child that had a disability. And so she was an advocate for persons with disabilities, including mental health disabilities. So there was intellectual disabilities and mental health disabilities. And it was John F. Kennedy, Rosemary's older brother, who took on a much needed, supported role for people with disabilities. And one of the first acts that he signed as legislation was in 1963, this Developmental Disability Service Facilities Act. And what it did was allow funding for centers where you would have research, education, and clinical services for people with IDD. Okay. And we were one of the first centers that were given funding. And we received actually additional funding through the Kennedy Foundation for our building. And Rose Kennedy was there with when the groundbreaking occurred in 1966. Robert Kennedy was there. Eunice Shriver and her husband were there. And they were very, very pleased to participate in this effort. And so we have some photographs and material from that day in 1966. Okay. So the Rose Kennedy Center focuses on occupational and physical therapy. Go through some of the services that you guys provide, the families, along with advocacy. The floor is yours. Go ahead. Okay. So essentially, the Rose Kennedy Center is made up of three components. And the three components are our clinical component, which is the Children's Evaluation and Rehabilitation Center. And that center is headed by Dr. Lisa Schulman. She's interim director right now. And we serve approximately 5,000 children per year with about 40,000 visits. Now, because of COVID, the numbers are a little bit different. We're doing a remote as well as in person. So they do a lot of evaluations of very young children in order to develop treatment plans for the children to ameliorate some of the issues that they're coming with. So we see children with intellectual disabilities, speech and language disabilities, behavioral issues, a wide range of issues. But the center is noted for its work in early identification of autism. We also provide special needs dentistry. We provide speech and language services and treatment, occupational therapy, physical therapy, audiological services and mental health services. That is our clinical program. Out of that clinical program, we then provide another set of services, and that begins our training. We have our... So you train... So I'm sorry to interrupt. You train the medical school as well because you said that you helped the medical school out? Yes. So we have a large training program. It's our LEND program. That program is dedicated to undergraduate disciplines. We have 16 disciplines that we train students in, and it is called our leadership in education and neurodevelopmental disabilities. And our students come and they get a stipend for participating in the program for a year training course. We also separate from LEND. But with our medical school, we have begun to do some embedding of intellectual and developmental disabilities into the curriculum of the medical school at the Albert Einstein College of Medicine. When you train or when students are trained, obviously they go through a variety of trainings. It's one of the trainings that they go through, sensitivity training, you know, because a lot of people... Do you think when people go into working with people with disabilities, do you think that they are scared to work with the population? How do you... How do you go about working with the medical school with issues like this? Okay. So when we do our training with students in particular, we're trying to break down barriers in care, first of all. Our LEND students attend sessions on bias training, you know, and also within our program, we incorporate self-advocates and parents as trainees. So it's a mixture of undergraduate students and then people that come with life experience. So we have parents, as I mentioned, and we have self-advocates that are part of the program and they're incorporated right into the program. They meet weekly with our students and there is an exchange of ideas and issues that occurs during these sessions. So it's sort of like hands-on first-person experience for the students. What do you think some of the biases... Sorry. What do you think some of the biases have been both in the past, you know, because, you know, we mentioned the word retardation, we mentioned certain words, because in the past, for example, in the 1800s, you had people with disabilities in institutions. So how has bias has been broken down past, present, and future or going into the future? So I think, unfortunately, part of the new nature is that we have to begin to learn to understand people. I always start off with stigma. People who have an intellectual disability are at a great disadvantage because of stereotype ideas. The idea is that a person with an intellectual disability has no capability to do anything or to make decisions for themselves. And so that kind of stereotype needs to be broken down. Ancient cultures viewed people with disabilities in many different ways, but part of that was related to the fact that we had in ancient times, Greek and Roman cultures, you had infanticide where if a child had a clear disability or deformity, they would let the child basically put them on a mountaintop and let nature take its course and the person would die. But that was... You said the person would die? The child would be left on the mountaintop. Yeah, that was infantic. As cultures began to develop and a better understanding of, you know, disabilities, there were different groups that rose up in the Middle Ages. There were religious groups that founded asylums or places where a person would be sent so that they could be taken care of. So it was a little bit more humanistic. And basically, but there was always poverty so that this group of people were always treated, you know, without not being treated well. Okay. And then during the industrial revolution, we had people who basically had disabilities and they could work actually on a farm. But when the industrial revolution came, they could not transition to an industrial lifestyle. So many people were left behind and they were left on farms and those farms essentially became the beginning of institutional care in the United States. Yeah, let me ask you, since we're talking about institutional care, Robert F. Kennedy in the 1960s viewed Willowbrook State School as a snake, snake pit. Okay. And according to Geraldo Rivera, his quote in front of the cameras, it smelled like filth, it smelled like disease, and it smelled like death. Why, why were institutions now, mind you, it was a good idea at the time, but why were, why did institutions get so bad and then parents had to, parents and other people from organizations had to pull people out? Why did it get so bad and why do people's mindsets get in that way as far as people with disabilities having to be put away? If you get my point down. Yeah, yeah. So as I said, people that were left behind were left behind in more rural areas. So that's where institutions basically began to spring up. Numbers of people, so you have, you have people moving into the cities, the type of lifestyle changing, okay? People left behind, larger numbers of people left behind then, and they needed to be taken care of. So these small farm settings turned into small institutions and then larger institutions as families could no, could no longer take care of the person due to, you know, industrial issues. And what also happened was at the same time, breakthroughs in medicine, okay? So people were beginning with the, with the breakthrough of antibiotics and medical advances, people with disabilities were living, beginning to live longer. So the numbers of people grew at that same time. Now what happened after World War II? So there was a feeling that basically in the United States, there was a good feeling that we had, you know, we had liberated Europe. And we as a nation were young, had a lot of energy. And families, when they, when men returned home, families did not want to accept, begin to accept the idea of an institution. So it were, at that time, after World War II, and in the 1950s, families were saying, we went abroad, we fought for freedom, we want better care for our sons and daughters. And so movements like the, the arcs, okay? The arcs, the association for the help of retarded children? Children, yes. So those were family based organizations. And they began to advocate for more services for their children. Okay. So we move into then, that was the 1950s, we move into the 1960s, and you have this family, this Kennedy family, who can identify with that, who that becomes a priority, mental health as well as IDD, okay? So these social issues become more of a priority. So federal funding begins to open up a little bit for this area. And also at the same time, in the 1960s, you have the civil rights movement beginning. And you have, after the civil rights movement, you have women's rights movement. And so the next wave of rights begins with people with disabilities. So you have the disabilities community pushing for change and for equal treatment. And so what happens is with that emphasis, you then have the beginning of legislation to back the advocacy efforts of families and individuals with disabilities. So you have in 1965, a major breakthrough with covering healthcare for people. And that was through President Lyndon Baines Johnson, who passes the Medicare bill, okay? And expands a little bit Medicaid, but Medicare becomes health coverage for, and Medicaid become health coverage for people who are poor and people who are disabled, okay? And we have 70s then laws like Section 504 of the Rehabilitation Act in 1973 and begins to prohibit discrimination based on disability and requires then through 1975, the IDEA, that children have access to public education if they have a disability. So this really opens up then education for people with disabilities in 1975. And so it says children with disabilities are entitled to a free and appropriate public education. So now the public schools have to open their doors to everyone and not refuse people, okay? In the 1980s, again, we see continued community program expansion with group homes, supported apartments, day programs, Medicaid expansion. And that's when also because of Willowbrook and places like Willowbrook across the country. Yeah, that's what Village to be specific also. Yeah, yeah, they begin to be mandated to be closed. They were given an opportunity, Willowbrook was given an opportunity to correct itself, but it couldn't. So then the judge in the Willowbrook case said, you must close. And then that opens up, again, another funding stream for people to get services in the community. The 1990s, we see another major piece of legislation, the passage of the ADA Act. And it prohibits discrimination against people with disabilities and employment, transportation, public accommodations, communications and access to state and local government programs and services. And so this really puts the onus on states to make sure that they begin to change their laws and accommodate people with disabilities. And ultimately, in 1999, the Olmsted decision said that you could not segregate people with disabilities. And then that was a form of unlawful discrimination under ADA. And you must provide the most integrated setting or environment for a person with a disability. So it wasn't no separate but equal. They had to be integrated. So that was the importance of that legislation. So it gives a little bit of a summary or a nutshell of the history of how this all worked. But getting back to how is the Kennedy Center set up, I mentioned the clinical program. The LEND program is the training arm. And then we have a research component called the IDDRC. So individuals with developmental disabilities research center. And that is a center that focuses on research on the basic causes of intellectual disabilities. And they're working on autism. And they're doing a lot of now because of the advancement of science, they're looking at genetic factors and many different basic science reasons for disabilities. The UCID, which I'm the co-director with Dr. Karen Bonick, the UCID is the University Center for Excellence in Developmental Disabilities. And we are funded through, federally funded through ACL, the Administration on Community Living. And our tasks are to provide, to work with these other parts of our program, to provide research, service, and most importantly, community education and advocacy work. And that is where we come in, in terms of working with the community and trying to enhance the capacity of our community to serve and work with people with disabilities. Yep. Okay. Oh, wow. That's a whole lot of information. Since we only have a little bit of time left, what, so you've been with the Kennedy Center since 1977. Did you start out, how did you start out working with the Kennedy Center as a parent advocate? Actually, I wore two hats at the time. One, I was a clinical social worker, so I worked clinically with families. And I worked with adolescents, primarily, teenagers. And, but my other hat was community education. And so I worked with volunteers that signed up to volunteer some hours at the, at our center. But as time went on, I did more clinical work. And my time was divided in half, working and doing community education programs. So we did a lot of educational workshops to help parents better understand some of the issues related to developmental disabilities. We did, we do a lot of advocacy work, meeting with legislators so that they can hear what parents have to say as far as what their children need. And over the years, I have worked actually since I began at the Kennedy Center, I brought over the first self advocacy group in New York State called the Bronx Community Self Advocacy Group. It's a small group. But we, we do a lot of work with our state organization, Sanis. And the self advocates run the group. And it's like a peer mentoring type of program. And it's very important now, especially because the members actually make presentations. As I said, they talk with legislators. They educate or they work with our now medical school program, which our second year students hear from them in their medical education, hear their stories and learn from the self advocates what their needs are. Because in, in medical treatment, there has been a lot of concern that from, from individuals with disabilities that there are, there needs to be a better understanding of how to talk to a person with a disability, what their needs are. And, and so this is something that we have incorporated into the second year of education with medical school students. So we give them a background on developmental disabilities. We give the students an understanding of the difficulties of communication and what they need to spend more time with people with disabilities because it may take longer to do an exam. And you need to listen to the person first and then ask if the caretaker or parents, if there was a parent involved, because we're working with adults, so sometimes there were no parents, then maybe discuss or have that person included if the person allows. So we're working on, on really how to work with a developmental, a developmentally disabled individual and as a physician how you can help that person overcome barriers. Don't forget we have physical barriers in the medical office. We have communication barriers. We have lots of problems just even physically getting into offices. There are transportation problems. There's architectural problems. The buildings aren't accessible. So the rooms aren't accessible. So we're working on all of this so that medical students who will be future leaders in medicine understand the population and can better meet the person where they are. Meet the person his or her needs are. So it's very important because there has been tremendous disparities in healthcare. Disparities in terms of what type of disparities in healthcare? So what they are are difficulties or delays in a cleaning adequate healthcare because a person may put off seeing a physician because they can't, they can't get to the physician, particularly people that live in rural areas. The lack of physicians are, it's a big problem. People with physical disabilities may have had problems getting a mammogram. Women have problems, you know, with the pap smear. All these gynecological problems are, are really, really Now getting, getting, we have a couple of minutes left, getting to your COVID education that you guys have done. Has, what are some of the problems that COVID has been with people with disabilities or groups with disabilities? And how has the Kennedy Center worked to try to, I mean, you can't fix the entire problem. But how has the Kennedy Center worked to combat that or help people during COVID? I'm glad you asked that question. Kennedy Center and our UCID program have been very, very active with COVID on education. So we received a small grant from the New York State Developmental Disabilities Planning Council to do COVID education. So we call that project VACS, FACS, DDNY, okay, Developmental Disabilities New York. And that project has been ongoing now for about 10 months. New York was very hard hit with COVID in the beginning. We were the first really epicenter in the United States. And so we lost a lot of people, particularly those people living in congregate care setting in group homes. So so far, I'm going to just give you an approximation. As of November, about 600 people passed away in New York State. Hold on, you mean in group homes, 600 people have passed away? Yeah, in most of them in group homes, okay? I'm not going to, I can't give you a percentage, but most of them in group homes. But New York has done a tremendous job in terms of COVID for people with disabilities. Our advocates were really on it, okay? And so right off the bat, each state has a tier of who gets priorities for the COVID vaccine. Yes, ma'am. So in New York State, medical staff were the, you know, the online staff people were the first category one, one A, one B, people with disabilities were included. Okay, so they, they had access. So we have about an 89% rate of vaccination for individuals in certified residential settings. That's apartments, group homes, people within OPWDD. We have 89% have gotten vaccinated. Our problem in New York State is that the DSPs direct support staff basically don't have that high of vaccination ratings. It's been a problem. We're doing education. I just came off a conference on that. But about 40 to 44% have received vaccines in that staffing, okay? Is it mandatory? I'm sorry. Is it mandatory in group homes for the residents to be vaccinated? No, there was a choice. There was a choice, but most residents wanted it to tell you the truth because they saw how sick people got. Okay? They wanted the vaccine. Yes, ma'am. But what's happening now actually, there will be, I think there will be a CMS ruling coming out. And so there will be a mandate for staff that are involved, at least in I think in the United States by December 5th, they're going to have to start getting the vaccine. But getting back to this, what we do is we provide educational webinars and information on our social media site for COVID-19. And so we work with our provider organization, AUCD, the Association of University Centers for Disabilities. And there is material on that website. There's material on our VaxFax DDNY website. And then, as I said, we do these webinars. So we're reaching families, staff, organizations, and our self-advocacy group will be doing an educational event for New York State self-advocates come December 10th. That group of self-advocates will be giving a webinar along with a physician on COVID-19 and the vaccines. But as I say, many people are vaccinated, but they still have questions. They have questions now about the boosters. They have questions. They have many questions. So really quick before we end, what is the website that people can reach? The Kennedy Center, the Albert Einstein College of Madison, go ahead on your programs. Go ahead. Okay. So the best way to do this is to go to www.einsteinestin.yu.edu and search for UCID, U-C-E-D-D, and you can get this material. Okay. And well, we would like to thank the Rose of Kennedy Center and Joanne Siegel for this informative program. Special thanks to the, like I said, special thanks to the Rose of Kennedy Center and the Einstein College of Medicine and Montefiore Medical Center for their work in helping people with developmental disabilities and developmental challenges. We would like to say special for Ableton on Air, special thanks to our sponsors, Green Mountain Support Services, Washington County Mental Health, and many others including the partnerships of the Association for the Blind and Visionarily Impaired, the Division for the Blind and Visionarily Impaired of Vermont, Central Vermont Habitat for Humanity, the Sustainable Montpelier Coalition, and many, many, many others. Thank you, Joanne, for joining us on this edition of Ableton on Air. Arlene is not here today, but see you next time on the next edition of Ableton on Air. I'm Lauren Seiler. decisions in hospitals, what therapy should be adopted to preserve a child's life, knowing that that therapy may bring about mental retardation or blindness. Almost 5,000 of these children are so severely retarded they will never be able to care for their own needs. This tragic human waste, which of course affects not only the child, but the family who is involved, can and must be stopped. And I think we have an obligation of country, especially a country as rich as ours, especially a country which has so much money to spend on so many things, which may be desirable, but it may be not essential in every case. We certainly should have the resources to spend to make a major effort to see if we can block this, stop it, and cure it. 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, US Press Corps, Domestic and International, Anchor FM, and Spotify. Partners for Ableton on Air include Yechad, 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.