Exclusive Interview with Steven Freeman, CEO, Young Adult Institute
Recently, Dr. Pola Rosen, Publisher of Education Update sat down for an exclusive interview with Steven Freeman, CEO of the Young Adult Institute (YAI). YAI has been a premier organization and service provider for individuals with developmental disabilities since 1957. As Freeman says, the organization is a “one stop shop” for the developmentally disabled and their parents providing a range of services from group homes, day programs, therapy and much more. Working at YAI since 1977, Freeman provides a unique perspective of how the organization has grown and what plans are being made for its continued growth.
Dr. Pola Rosen(PR): Can you tell us the kind of work that you’ve been doing since 1957?
Steven Freeman(SF): A group of thirteen parents in 1957, who were sharing a common pediatrician met each other; their doctor recommended that they get together and meet with a psychologist to do some life planning. In 1957 the availability of services was extremely limited. They started an after school recreational, socialization program. As their children progressed to adolescents and early and late teens, they started thinking about the next step for a young adult and with the help of our agency, they created one of the first group homes in 1971.
That facility grew into housing almost 24 people over the next three years. In 1975, the whole world changed in New York State for disabilities. Geraldo Rivera, working for ABC News, climbed over a fence at the Willowbrook State School on Staten Island with a camera crew and showed some of the most horrible conditions known to mankind in treating people. From that ensued a class action suit by a group of parents and the rest is history. The field really began to grow. The state and federal government had to mandate to empty out the institutions and the models that they created for adults were group homes. YAI really experienced its major growth shortly after that. We were well positioned having already opened one group home and from 1977 through 1992 we opened approximately 48 group homes.
There is a huge number, almost 758 people living in group homes right now, but it’s only one small part of what YAI does. So you ask what is YAI? It’s a sort of a one-stop shop for parents with children who have varying special needs. Our predominant population is developmental disabilities. We began opening a model of services that provided opportunities for people to learn during the day. For some who had extreme needs, more in the severe and profound category, we opened our day treatment programs. These programs were geared towards helping people learn to toilet themselves, eat, basic daily skills, dress themselves, etc.
PR: Were the students taken out of the group home for those programs?
SF: That’s correct. They travelled together to another site and a number of group homes came together in one site. That model to some degree still exists today. The group home and the day programs, whatever activity was going on during that day, grew to much more sophisticated kinds of approaches by understanding individuals. So now we have employment programs at YAI; we have after school programs similar to the one that started the agency; we have in home respite programs and in home counseling programs; we have a unique program called Parents with Special Needs. These are two parents who they themselves have developmental disabilities, marry and have a child. It’s not unusual that their child is developing and doesn’t have any special needs. These parents need to understand how they raise a child in a world where I may be a little different but my child is the same as others. So, we train these parents on parenting skills. Community based programs, the group homes, the day programs, the employment programs, and then finally we have added a series of rehab and medical programs to YAI that have grown extensively. We have our own occupational therapy, physical therapy, and psychology programs. We have five centers that do that and in 1997, we opened our first medical center in one of the allied programs with YAI.
PR: Where is that?
SF: We have five sites. We have one in Manhattan. We have one in Queens. We have two in Brooklyn. We have one in the Bronx.
PR: Are they independent or attached to hospitals?
SF: They’re all independent, free standing medical practices and they run a full range of services from primary care to about sixteen different specialties. We have psychiatry, psychology, occupational therapy, speech therapy. For a parent who enters the YAI system, he or she will be supported by our organization, beginning with the New York League for Early Learning, for the rest of their lives.
PR: They never need to step outside of the organization. It sounds like all encompassing and all embracing.
SF: That’s our basic strength here. Our approach is to have a consolidated, unified service. It is so difficult for a young parent to navigate the system that exists here let alone those who recently came to America to try to understand. What we try to provide them with is an easy entry into the system and support throughout. One of the ways we do that is we have everything in house with the exception of in patient hospitalization and we are affiliated with a number of hospitals who do that.
PR: How many people are currently being served by YAI? How many people are currently working for YAI?
SF: In round numbers, we have about five thousand two hundred staff. It’s a very large organization located throughout New York, New Jersey, Puerto Rico, and the Virgin Islands. We also do national training for other organizations and other government entities. Of that five thousand two hundred, about three thousand seven hundred are full time and the others are part time practitioners and clinicians who join us in a variety of sectors. We serve somewhere in the area of about twenty thousand people a day from our early childhood and preschool programs to our group homes to our day programs and employment. Our people may use clinics, our group homes, and our day programs. Operating a program like this for us has been somewhat challenging but at the same time, extremely rewarding.
PR: What are some of the great challenges that you face? Is your organization unique in this country? Is anyone else your competitor or doing what you do?
SF: There are a lot of organizations that do parts of what we do individually and some who do much of what we do but no one that I have seen who does all of what we do both in terms of service delivery, age wise, or geographic locations. We are the largest of our kind. Today we are sitting in an environment where resources are diminishing. There’s an economic problem going on in the country and the typical taxpayer isn’t really interested so much in helping others when they themselves don’t have a job. Generally speaking, the world has changed in regards to how people that have special needs are perceived by the outside world. I see that both as a challenge and an opportunity. We have spent too much time thinking about people with disabilities as these poor, unfortunate individuals whom God placed on earth and we need to help them. I see it more as an opportunity to challenge people who have their own challenges to be as much as they can be. The success stories that we have encountered and those that happen outside of our system are amazing. People are born today without legs and they are running in the Olympics. People are born today without language, without speech, with severe brain damage and they are holding down jobs. People at the far end of the Asperger’s Spectrum are holding down IT positions in the Silicon Valley. We need to rethink in this country what our expectations are of people with disabilities, set the standard and the bar much higher, and move towards that bar. For the typical parent, at the moment of birth, those who aren’t well trained, generally would say, “well, I want you to understand your child will never walk. He may never talk, definitely won’t go to school, college. He’ll have special needs.” At that moment, most parents have an expectation that has been set for them so low that they don’t know where to begin. All they want for their child is to be healthy and live without anything else. The average parent, when their child is born, experiences the most joyous occasion in the world. They’re thinking about the child going to college, becoming a professional, getting married and having a family and entering society. We need to rethink how our service deliverers treat parents particularly in the medical profession and those in early childhood and that’s what we are doing here. We are telling our parents we don’t know how much your child can achieve but we’re going to have them try as much as we can to have them push themselves. There are a lot of stories here. We have people getting married at YAI who entered our school system, moved into a group home. We have people who are entering our employment programs and achieving some amazing jobs. We have a child who was on the spectrum, went to our school, went to our day program, no language, all the stereotypical signs of autism: rocking, finger twirling. We found him a job at a car wash because we found that he was so interested in working with machines that vibrated. Whatever the interest was and whatever we need to do to unlock that kind of thinking, he is now taking towels out of an extractor and giving it to people and he’s making money earning a job, 10,000 dollars a year where the state was probably paying us 20,000 a year to train him in a school. That to me is the example of where this world should be going and where parents and practitioners need to start thinking.
PR: Well, you’re reminding me of one of my favorite historical figures, Winston Churchill who said, many years ago, “the mark of a society and how we judge a society is the way it treats its most challenged citizens.” It seems to me that YAI is certainly doing the most spectacular job with that group of individuals. So, Winston Churchill would be proud of you.
SF: Winston Churchill is one of my heroes as well. The concept behind never taking no for an answer, expecting so much more from ourselves is an incredible concept that we have now put together in our own saying here at YAI. The theme I have instilled in the last few years is the theme of living, loving, and learning. That we are more alike than we are different no matter who we are. That even those who can’t tell us want a nice place to live, they want good relationships and they want to do something productive with their life. They want to feel good about what they do each day. That makes a happy, healthy human being. There are many studies being done now on happiness and what is happiness? In my opinion, if you have a good place to live, good relationships, and good job, good productive activity, you’re going to feel good about yourself. The living, loving, working theme is instilled in every one of our programs here. We’re creating better working opportunities, better living environments, and more opportunities for people to meet each other. Socializing for people with a disability is very hard. There are no websites where people meet each other and their parents are kind of frightened to let them go on them. There are no centers where people actual get to go and when they do, they are not so comfortable. We’ve created a whole lot of new programs that are sort of state of the art to have people meet each other, to find jobs, to increase the interest from employers. We have a program in YAI where we spend six months in a corporation (we sort induced their interest through tax incentives that are available through the federal government) and we train their staff. What we’ve found over time is those employees that we place are most successful when the work site staff are ready to accept them because our population behaves somewhat differently than you might expect in a typical work force. So, they might interrupt you at work. They might ask you a lot of questions. How do you react to that? During lunch hour, someone comes over and sits with you and starts talking in phrases you don’t understand. How do you react? We spend six months training and raising the sensitivity level and educating the work force. Most of our employees then enter the system after they’ve been trained and they are accepted and are almost eager to see what the other individuals who are waiting for them have to offer and vice versa. Preparing the world for disabilities and changing the idea of what they can achieve has to be a major goal of organizations like ours.
PR: Well you are uniquely positioned to be able to do that kind of training because you have a background in social work.
SF: I was recently inducted into the Hunter College Hall of Fame. It was a wonderful ceremony and I took my family. There’s a plaque hanging in the 68th Street campus site. I am a native New Yorker, although I have travelled all over the world and I had an opportunity to visit a lot of places but New York is my home. I went to the public schools here. I went to Queens College and then I went on to Hunter College. My background in social work was basically instilled in my early life. I lived on the same block with what is now known as world renowned organization, the Henry Street Settlement. So, my first exposure to the concept of community based help was the Henry Street Settlement and that led my towards my career in social work.
PR: Tell me a little bit about what kind of roadmap should parents follow who are facing challenges with their children at the beginning of life and are so stressed out? What can they do, what should they do and what does YAI suggest that they do?
SF: This becomes for most parents the most challenging time in their entire life. They have been hit by what is the most incredibly uncomfortable, depressing, challenging experience. We have created a department here called YAI Link. YAI Link’s sole job is to give parents the support, comfort and education and lead them into a roadmap for a lifetime. What YAI Link does is to assign you to a sensitive, caring social worker that understands the needs of young families who recently have had a birth of a child with special needs. They will immediately engage you on giving you the lay of the land so to speak. Their goal is two-fold, it’s information, support and eventually referral into our system or out of our system into other places if we don’t have the services they need through a very simple application that can be filled out on-line from their own home, because parents of kids with special needs can’t get out a lot. Most organizations don’t think about the very practical issues of having a parent who receives services. Often, they call the parent in. The parent has to find a babysitter and they may not be able to. Most of our work can be done on the phone if they don’t do it on-line. From that point on they are assigned a customer representative or a navigator who helps them understand not only our system, but the entitlements that are due them and the system at large, which can be extremely complicated. I have been doing this now for almost 38 years and as the rules and regulations change and as the departments who do oversight change, it becomes almost impossible for an individual who doesn’t do this all the time to understand how to get through that system.
PR: Do some parents hire attorneys to help them navigate?
SF: At varying points in the individual’s life, occasionally an attorney is necessary. We most often see attorneys brought into the education system. So let me give you an example: a child is three years old and he is entitled but most parents don’t know that their child is entitled to a preschool education that is funded by the City of New York through the State Education Department of New York State.
At the age of five, children need to transition out into a school system. Many parents cannot find a public school in their area that has the appropriate resources, teaching staff, and programs to train their child with disabilities. At that time those parents who understand the system often hire an attorney to help them navigate the next step. If you are able to visit a sufficient number of schools offered to you by the New York Department of Education and cannot find an appropriate classroom for your child and can make a reasonable case to the City, the City will pay a portion or all of that tuition to a private school. That’s a legal process.
We don’t provide attorneys. We have a list of attorneys; there are only maybe 5 or 6 attorneys in all of New York City who specialize in this area.
PR: Now what about those children who come to you for services or are receiving services from you in the schools; are those paid for by the government?
SF: Yes. So we operate basically two types of programs - one very small, recently opened and the other fairly large if not the biggest in the state. We operate an Early Intervention in the preschool system. The Early Intervention system is funded through the Department of Health City of New York and through the State of New York Department of Health. That’s an entitlement program, which requires an eligibility review but not income based. The eligibility review is based on the needs of the child. If after certain evaluations it is assessed that the child does qualify for services it is sent over from the evaluator to the New York City Department of Education or Department of Health depending on their age group. The Department of Health oversees birth through three. The New York City Department of Education and the State Education Department oversees three through five and thereafter. So once the official municipal entity approves the evaluation needs, the child can then be forwarded or asked to go to a particular school by the City of New York. And they receive services free of charge to the individual. Obviously it’s the State tax, the State money that’s paying for it but they don’t have to pay for it themselves. So there is no income requirement typically that you might think for this kind of a service. And that will be the same for children 3-5. It requires a needs based assessment that is done by an organization that specializes in evaluations. We do evaluations, we refer outside to other schools, we refer to our own schools. We refer to children saying your kid’s fine. We do see some trends that are happening. Parents have some major concerns about mercury based vaccinations so they think there is something wrong with their child. A large percentage of parents who bring their children to us for evaluation, they fall into the typical range of developing. Some kids peak a little bit later than others as you know. Some kids may have a little bit slower motor development. So we don’t refer them for services. We say watch your child and bring them back in a year if you still think it’s an issue. But for those who do need services, it is paid for by the City and the State.
PR: I visited the Arc of San Diego and I visited a facility with developmentally disabled adults ranging in age anywhere from 21 to 50 and they were learning certain skills. They were packaging things that were going to be used in our society. Do you have anything like that?
SF: You are describing what used to be termed a “sheltered workshop”. This workshop was designed initially to provide a work-like experience, which is work for individuals who couldn’t work in a typical environment at the time.
PR: That’s right.
SF: They packaged all kinds of things. The airlines industry when you open up the fork, the knife, the spoon. All those things are usually packaged by a sheltered workshop. Pens are put together consistently by sheltered workshops. It has been our belief shortly after we opened we had some workshops that it was isolating individuals and not really getting them to achieve the full optimization of their abilities. And so we closed our sheltered workshops thirty years ago and in place we decided to create relationships with corporate entities to get real jobs in my opinion. What’s happened in New York State and this is typical across the country is that we have done a great job here in provided caring, nurturing services for people that the institution that I spoke about earlier was never able to do. But now it’s time to go to the next step. We have a lot of the people we have supported living in the community but not necessarily a part of the community. Here’s where I think YAI differs from other organizations. We are pushing the envelope to get people more integrated into everyday activities in their community - To join civic associations, to have jobs, to use all the facilities. You know it’s one thing to live in a group home, get on a bus, go to your program/training school, go back home, and on the weekends go bowling with the same group of people. However, we’re looking for individualized, self-chosen experiences for the population. When you ask people “what do you want living in group homes?” they will tell you when they can and if they can’t you learn techniques to understand it. If you ask people enough, they tell you “I hate bowling you take me every weekend bowling. I’d rather go to the movies, I’d love music.” Many of our population have particular hobbies that they would just love to do. And it becomes a challenge for us to individually try to help them fulfill it. It’s much easier for organizations like us to put people in groups of 5 or 8 or 10 and move them from one place to another. It’s much more difficult to find out how do we get this person interested in stamp collecting on a Saturday to go out there and support them while we have 9 other people to take care of. And that’s been sort of our most recent discussions here, meeting the needs of the individuals so that they can fulfill a really wonderful life to reach and achieve happiness that we talked about earlier.
PR: I think that’s spectacular because I think that one of the things we haven’t done is to ask individuals. We assume because they can’t verbalize, they don’t know and we should then therefore assign them something. What is the next step for us? What do you think?
SF: Great question. The next step is exactly where I just started talking about - Getting people who we support to have a much greater part in society. When I was on my honeymoon, a long time ago, longer than anyone can imagine anymore, we wound up in Denmark my wife and I. We were travelling around and what struck me about being in Denmark in 1975 was that people with disabilities were on buses; they were working; they were everywhere. And they weren’t there in groups. They were there individually. Whatever accommodations needed to get onto the buses were built by the government. Whatever possibilities they had for jobs people were open to giving them to them. And they were so integrated into the world that it became not different, it wasn’t as thought now somebody rolls down the street in a wheelchair and people still look at them a little bit or they go in groups. That wasn’t the case in Denmark. What we need to do here in the United States is to offer more opportunities for people with special needs. People have these challenges, people who are different to become a greater member of society. And we need to challenge ourselves. We have a program that starts very early. We have an integrated classroom. It started out when most of our staff needed daycare. So we said to them why don’t you come and have your children be in a classroom with kids with special needs during the day. Some took the opportunity and what it did was it offered them a daycare opportunity but it also began to teach these children at age 3 side by side what it was like to be next to a child with a disability. And we found that their attitudes and values as they grew-up became so different than those who never were exposed to this. So if you begin to change the attitudes towards a more integrated society; if you begin to open up doors and opportunities through funding and advocacy; f you begin to be creative in thinking how do I use new technology to assist that person, to do something that he couldn’t do, that’s the next frontier. That’s where this organization is pushing the envelope both with New York State and it’s funding sources and it’s creative thinking. Between what we know now about brain size and how the brain works, what people can achieve and what technology can offer. We are working very closely now with Samsung to develop a medication dispenser. Right now staff has to pour out the medication, they have to hand it over to somebody. What that does is it makes the individual dependent on the staff person they are working with. If you can push a button and have it dispense adequately and that machine also alerts somebody if you need to take it. You are now leading somebody to be more independent and not dependent. So the next level of what this organization is moving towards and what the world is moving towards is inter-dependency.
PR: Is that going to be a chip that is implanted? Is that what you are referring to? Or is it just some device?
SF: No this is a small device that they are working with. What we have seen now is that most organizations, most corporations that we are working with – Sony, Samsung, Panasonic, the larger ones are realizing that the baby boomers are coming of age. They want to sort of age in place. Where it was a given that your parents generation might have thought about going to Florida, or sort of just gone somewhere else or maybe entering a nursing home at some point. Baby boomers are not thinking like that. They want to figure out they need to stay in place. Well that’s the great equalizer. Our population always needed to figure out how to stay in place. They walked a little bit slower so that major corporations are saying ‘how do I create all kinds of support and resources that will help the baby boomers stay in place and they are beginning to use our organization as a beta site to see if it works?’ Did you open the refrigerator? Can I take your blood pressure? It may not be important to you but to the child who lives in Indiana whose mother didn’t open the refrigerator for 24 hours and now realizes he can get an alert that becomes an issue. Because of all of these things that we are working on with these different corporations, we assigned one person who we recently employed who was a major VP at IBM to work with us on developing corporate relationships; to help push the envelope of bringing us together to create new technology to promote independence.
PR: What do you do about the training of staff? Do you offer teachers and others and other individuals training and actually even internships and degree training opportunities? And I just want to preface it by saying that I went to the first graduation given by a museum, the American Museum of Natural History last week gave a PhD and that’s something unheard of in our society. It’s always been a regular college or university. So I now pose a question do you provide any training or any type of certificates or degrees?
SF: Yeah, we do a lot of that. We started out as an organization and most of the organizations in the field have had people who just wanted to do good; i.e. a husband and wife who ran a group home. We decided we wanted to professionalize the field. So we predominantly hired people with a college degree; very different than other organizations. We have a huge education-training program that works from the moment you come in at orientation to every step of acquiring clinical and other educational skills necessary to do the best intervention. We make videotapes that we use within our own programs and we sell all over the country. It’s been a wonderful opportunity for us to connect with other states in this country. And it’s become a small business for us. Our videotapes are in-home training guides. We are very closely aligned with CUNY in a special program that is training people to work with the population in our field. They provide a certificate. In some of our programs they provide training on-site. So we have had a lot of graduates who have gone through this professional training program for disabilities. And finally we offer an incentive to retain our well-trained staff that we put a lot of time and effort into by going back to school for graduate degrees by supporting them through tuition reimbursement and other programs so we can maintain a continuity and help educate them at the same time.#
