In this episode, Harold Reitman, M.D. speaks with Steve Sulkes, M.D, the Director of UCEDD/LEND at University of Rochester Medical Center, and the incoming President of the AADMD. He is also a recipient of the Golisano Foundation Leadership Award for Exemplary Health Care Services. Dr. Sulkes discusses the challenges of treating patients with special needs, the importance of educating medical professionals on different brains, and how treating a neurodiverse patient during his residency forever changed his outlook on medicine.
To learn more about the University of Rochester Medical Center’s Strong Center for Developmental Disabilities, visit: https://www.urmc.rochester.edu/strong-center-developmental-disabilities.aspx
For more on the work of Dr. Sulkes, visit:
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HACKIE REITMAN, M.D. (HR): Hi I’m Dr. Hackie Reitman, welcome to another episode of Exploring Different Brains. Today we go up to the University of Rochester in New York to speak with Dr. Steven Sulkes who is the incoming president of The AADMD. Steve welcome.
STEVE SULKES, M.D. (SS): Thank you, good to be with you.
HR: So I was looking over your resume and you know one of my heroes Steve Pearlman who was one of the cofounders of the AADMD spoke so highly of you and said you’ve got to meet this guy. You have dedicated your life to those of us with developmental problems, with neurological problems. Tell us how you got into that and what is it that you do.
SS: That’s a great story. I actually I’m like many people who work with people with intellectual and developmental disabilities had no personal experience with this population. In fact when I was applying for pediatric residencies, where there were programs that had obligations with people with developmental disabilities I actually sort of rated them lower because I was scared. I happened to end up at a really great residency program at the time in Syracuse, New York at Upstate Medical Center. While I was there they created a rotation for pediatric residents focusing on developmental and behavioral problems. I was one of the first people to go through it and it was pretty creative. One of the things that they did was the first or second day they had us go to a state institution in Syracuse and after some introductory talk they had us go and meet some of the people who lived there and the first thing I was asked to do was to feed a guy lunch. This was a guy with cerebral palsy and behavioral challenges and was nonverbal and I didn’t know what the heck I was doing. I was wearing more of the purred food by the end of that meal than ever got into him. I was thinking this was going to be a long month. Anyway I got my lunch break and they had me go to this guys program area where he was getting served in a day program and there I saw the same guy that I couldn’t do anything with responding to a very creative teacher in the room and doing various tasks and every time he successfully completed a task they wheeled his wheelchair over to a wind chime that was hanging in the middle of the room where he could get at it and he would wack the wind chime and get a big smile on his face. I thought oh man did I misjudge this guy and did I misjudge the entire field.
Well over the course of that month I spent time in schools, in community settings, and really got to see kids with developmental disabilities in settings that were not health settings and I suddenly realized that these kids have lives and they were cute and they were fun and they were playful. I went to one school I will never forget, it’s called Jowonio in Syracuse where half the kids had disabilities and half were typical kids. At recess they went out in pairs to the playground and I went out after them and when I got out to the playground, if the kids weren’t using adaptive equipment I couldn’t tell which kids were which. I thought this is it! This is Valhalla this is the way it’s supposed to go in the world and I said boy have I been stupid. And I had sort of an epiphany and I realized why not only had I misjudged what I had thought about this population but I was actually kind of attracted to working with this population. So I applied for fellowships and my wife who is also a physician was going to be doing a fellowship somewhere and I figured I was going to do primary care and I ended up applying, she was applying in Boston, I applied at Boston Children’s and got a fellowship with Allen Crocker who you may be familiar with. Allen was a giant in the world of developmental disabilities and an absolutely wonderful person who was tapped into the essential humanness of every individual he met. He taught us about that. And I came out of that 2 years saying ok, I can do this all the time. I’m not just going to do primary care and serve people with developmental disabilities on Friday afternoons, this is going to be what I do all the time.
I came to Rochester, New York. My friend, now mentor, Phil Davidson, who was the head of the University Center for Excellence and Developmental Disabilities here at Rochester. I met with him and he actually helped me find a job working at a state institution where I was for a year and then I was able to move over to the University of Rochester full time. I’ve been here ever since, I started to train pediatric residents and then other residents and then we started a pediatric fellows program that we’ve been running now since about 1985 and then later on I got lucky and we got funding from the Maternal and Child Health Bureau for what’s called a LEND program a Leadership Education in Neurodevelopmental Disabilities and we’ve had LEND program here training both not just physicians but people in 12 other professional disciplines for the past 20 some years. I’ve been able to have fun seeing patients with developmental challenges and working with an interdisciplinary team and learning from all the people around me the whole time. That was a long answer sorry.
HR: That was a great answer and I love hearing your passion and your love for this. Tell us about the rest of the Developmentally Disabled Supportive Community up there in Rochester. You’ve got a big band up there don’t you?
SS: We do, we do. We’re very fortunate. We are one of the biggest divisions of Golisano Children’s Hospital here in Rochester and as I mentioned our LEND program which is a funded fellowship training program that works in a bunch of different disciplines. We also have the strong center for developmental disabilities, which is the university center for excellence and developmental disabilities. The UCED network and the LEND network are two nationally funded, federally funded groups of places. UCED exists in every state and territory. I think probably people who hear your broadcast are familiar with UCED, they do service, they do training, they do research, and we get to do advocacy and that’s one of the few federal grants that says you’re actually supposed to do advocacy. It’s very exciting to actually have in your job description that you’re supposed to go talk to politicians.
HR: Very Cool.
SS: Yeah, I mean the University gets really nervous about that but we say hey we got to; it’s in our grant. But we have a really big program here doing clinical service and several of my colleges who are much better researchers than I am, have a really exciting research program focusing on Autism Spectrum Disorders. So we have a bunch of even in addition to all the supports we provide to schools and families and the clinical work that I do and the other MDs do we’re pretty busy. Now we don’t just serve people with Autism Spectrum Disorders, we serve the entire range of developmental disability, so we’re working with people with spina bifida and Down syndrome and cerebral palsy and everything else.
HR: Give us an idea on some of the specific types and names of entities that you’re involved with and give us a feel for that.
SS: I had the good fortune when I was a fellow 30 plus years ago to help run the Down Syndrome clinic at Boston Children’s. So I got to be a little bit of an expert, not a super expert but I developed a level of comfort working with people with down syndrome to the point where I’m asked to see and my colleagues here are asked to see most kids with down syndrome even though a lot of their primary physicians feel very comfortable working with people with Down syndrome, they’re not turning their primary care over to us, but we’re providing consultation. So we will help them remember to think about some of the health problems that are more common with people with Down syndrome. Sometimes we’ll find ourselves thinking behavior stuff that turns up in a person with Down syndrome or some other condition.
In fact I have a great example. There was a guy who was older, he was in his 60s who I was asked to see a couple weeks ago and he was in the hospital and they were discussing whether or not it was safe he was safe or he should have a gastrostomy tube to help him be fed safely because he had swallowing problems so this is an older guy in his 60s who has down syndrome and the question was is he able does he have capacity to weigh in on whether he wanted to have this gastrostomy tube or not. So I went over and spent a few minutes with him and he was not verbal with me. I asked the people who were with him if he was talking and they were like no he just kind of mumbles a little bit but he doesn’t’ seem to be talking. But he seemed to make really great eye contact with me and was responsive. So I asked if anyone has tested his hearing? And they said oh he hears. Well do me a favor can we just make sure, send him to ideology as long as he’s sitting in the hospital anyway? They sent him to ideology, he has moderate hearing loss bilaterally and we put amplification in and now he starts responding to me much more and when I asked him if he wants the gastrostomy tube he said no. I said really? It could make you sick you might aspirate and get pneumonia. How about this tube? And he’s doing this to me with his hands and I say does this mean no? He said no. Ok you don’t want the tube I get the message, you didn’t need to be a rocket scientist to say check the guys hearing but I knew people with down syndrome are much more frequently having hearing problems that can be progressive when they get older. So I was able to provide that kind of consultation.
HR: You know you bring up an interesting point with this on Down syndrome. And I would just like to pursue this a little bit.
HR: One of the problems we have is lets say one is a pediatrician ok they treat children and yet you go to a pediatricians office and you see 29 year olds in there who have been treated the whole way. With your expertise you were just describing a 60-year-old adult. Do you find it a problem in over coming the artificial specializations per say according to chronological age or is that not a problem?
SS: Well it’s a problem because I’m board certified in pediatrics and developmental disabilities and what not and so people know around the hospital that they can call and get me to provide consultation but I’m limited, I’m not going to take a 29 or 63 year old patient on as my patient long term. Developmental disabilities specialty can cross and we have colleagues that are providing service to people with developmental disabilities across the life span here and that’s a big push to help make that transition to adult primary care with special health care needs. That transition is a big barrier helping primary physicians be smart and comfortable in making themselves accessible for adults who have developmental disabilities and similar kinds of challenges is a huge problem. That’s a big part in what I’m doing, is trying to help identify some of the people who are most receptive in our region and give them the tools they need to effectively and comfortably serve people with intellectual and developmental disabilities and continue to make a living doing it. So it’s interesting, I don’t know if you have met Matt Holder?
SS: From ADMD. Matt is the director of a clinic that focuses on providing primary care to people with developmental disabilities and he and I have a wonderful on going debate about this. Because his clinic is great, it’s receptive it’s got all the accessibility options, people think about behavioral challenges and are able to deal with them but he can’t serve all the people of Kentucky who have developmental disabilities in his site. There is just too many, so my concern is that we don’t want to replicate Matt Holder’s type of program everywhere, that may not be economically feasible and plus people should be able to get primary care where they live in their communities. So he and I have a debate going that is a friendly respectful one about which should we be doing? Developing specialty clinics or figuring out what we need to support community primary care providers so they can be more receptive and serve more people.
I mentioned our LEND program and that we have people in all these different disciplines and we have 15 to 20 people come through each year and they’re all graduate students or fellows, advanced folks who want to develop in disabilities. One of the most powerful experiences we give them is to connect them with a family and go into the community and visit the family in the home or go to a person’s school or work place and have the kind of experiences I had when I was a resident of actually seeing what people’s lives are like where they are living and seeing the challenges but also seeing the successes when you get out of your professional bubble and start seeing people as people as opposed to patients or people we’re serving, I think that’s profound and my little dream, it’s been working great for our LEND trainees for many years, my dream is to have every primary care position and dental resident coming through the university of Rochester health care system have that kind of experience. Just 2, 3 visit with an individual or a family where you’re not being asked any medical or dental questions. You’re there to learn and you’re there to learn about the person’s life and find out about the family and the circle of support that person has. I think that once we get out of our professional bubbles we can understand people as people and not just as patients. I think that suddenly turns us into much better healthcare providers.
HR: Now with you taking over as the AADMD now.
SS: Not for a year or two
HR: Not for a year or two, but when you do is are you or right now is there any push to do anything differently within that great association?
SS: Yeah. We are trying to, well we just went through a very good strategic planning process with the organization that we’re still sort of figuring out the path that we’re going to take as we grow and thrive we are welcoming not just physicians and dentists but people from other clinical disciplines, optometry, nursing.
HR: Dental hygienists.
SS: Yup you’re right. So because serving the population that we serve is inevitably an interdisciplinary activity we want to maintain our focus on health because there are other organizations that are interdisciplinary that address the needs of the population that we’re talking about but what AADMD has as its main bye word is “health”. Health broadly defined but that’s going to continue to be one of our big pushes. We continue to partner with Special Olympics and AUCD and other organizations to do things that make health more likely to happen in all kinds of different settings, but actually one of the things we’ve been talking about, actually one of Rick Rader’s big efforts that I admire.
HR: His brain is different
SS: Yeah. Is focus on helping to train direct service professionals who work with people with developmental disabilities and are the aid and direct support people who are in many ways in the bottom of the professional chain. Sometimes they are coming into the field not knowing much about developmental disabilities and learning it as they go. What they maybe learning might not have much to do with health, it may have a lot to do with behavior and rehabilitation, so helping that group to be smarter, continuing our work with people who are coming up through our professional training programs, whether they’re professional schools or medical schools and residencies and engaging people and then finally as I said before, continuing the policy push to make sure that the health care system that we’re working in doesn’t ignore this population and attempts the health disparities.
HR: Now lets say I’m a health care provider, I might be a dental hygienist, I might be an orthopedic surgeon, I might be a dentist, I might do root canals, and I have listened to you today and I want to learn how to take care of the special population so I feel comfortable, it won’t kill my bottom line at the office and I can really get into it and comfortable, how do they get ahold of you?
SS: Well the best way to get ahold of me in a situation like that is to contact the AADMD at aadmd.org or aucd.org we have a list of members and a directory and both of those organizations are made up of people with a variety of interests. So I’m here at university of Rochester, if you call University of Rochester medical center at Golisano Children’s hospital you’ll find me. People can call me or email me or whatever but I may not be the perfect guy to answer the question you’ve got. We do actually have for providers in our community we have a provider hotline for people to call up and ask questions about their patients because we realize sometimes all you need to do is just give somebody a couple pointers and they can handle it themselves rather than just taking over the patient and being an in person consultant we can be a remote consultant and get the job done. So all of these are ways to do it but I encourage the people tuning in to recognize the value of these other two organizations and as well as when it comes to kids the American Academy of Pediatrics has a council on children with professional healthcare needs and council for children with disabilities. The members of the council and section are pediatricians who particularly care about this population. So we’re all over the country. Those are three great organizations and you can find me in all of those but you’ll find people with skills that will line up even better for what you’re looking for.
HR: Well we’ve had the great pleasure today of talking to one of the people who’s making a big difference in this world, Dr. Steve Sulkes up there in Rochester, New York from the AADMD and so many other organizations. Thank you so much for being with us here on Exploring Different Brains Steve.
SS: Thanks Hackie, joy to be with you.
This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.
Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.
Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).
Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).
This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.
In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.