People with intellectual disabilities have some of the lowest health status of any group in the world, with dental care being a critical unmet need. In this week's episode you'll hear from Dr. Steven Perlman, who has dedicated his career to improving health access for people with disabilities, and advancing equity for this underserved population.
Dr. Steven Perlman is Clinical Professor of Pediatric Dentistry at the Boston University Goldman School of Dental Medicine. He's also the Adjunct Professor of Pediatric Dentistry at the University of Pennsylvania. He is a fellow of the American Academy of Dentistry for persons with Disabilities and is recipient of the Academy's Harold Burke award in recognition of his lifetime achievement in caring for people with disabilities.
He is also most proud of being co-founder of the American Academy of Developmental Medicine and Dentistry. Steve is well-known for founding Special Olympics, Special Smiles, an oral health Initiative that offers free, and, sometimes, life-saving dental screenings to athletes worldwide.
About Northeast Arc
Northeast Arc was founded in 1954 by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. By having the courage to challenge professionals who told them their children could not be educated and would not live to become adults, these parents created the systems that enabled them to attend public schools, develop friendships, reside in the neighborhoods of their choice and to earn a paycheck. Over the years, our programs have expanded to support children and adults with a broader range of disabilities, including autism and physical disabilities. Today we serve thousands of people in nearly 190 cities and towns across Massachusetts. The goal of the Northeast Arc is to ensure that children and adults with disabilities are able to live, work, engage in civic life and play in the community. We work toward that goal by offering a wide variety of programs including Autism Services, Day Habilitation, Deaf Services, Early Intervention, Employment Services, Family Support, Personal Care Assistance, Recreation, Residential and Transition Services. Northeast Arc is overseen by a volunteer Board of Directors composed of individuals with disabilities, parents and siblings of people with disabilities, and business and community leaders. Programs are operated by a professional staff led by a Chief Executive Officer with 35 years of experience at the helm of the organization, and are supported by a large volunteer corps.
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[MUSIC PLAYING] Hello, and welcome to All Things Disability, a podcast from Northeast Arc. My name is Jo Ann Simons, and I'm the president and CEO. Today, I'm honored to be joined by Dr. Steven Perlman.
I've known Steve for years. In fact, I probably won't tell you how many. And today, I'm thrilled to speak to him about his work, providing critical care to children and adults with disabilities.
My life changed 29 years ago, when I got a call from Eunice Kennedy Shriver to treat her sister Rosemary Kennedy. And Rosemary had some terrible and severe dental problems and needed addressing. And interesting, that the family sought a pediatric dentist 2,500 miles away to treat a 63-year-old woman. But that's just the indicative of the problems of health care and especially dental care in people with intellectual disabilities.
Steve is Clinical Professor of Pediatric Dentistry at the Boston University Goldman School of Dental Medicine. He's also the Adjunct Professor of Pediatric Dentistry at the University of Pennsylvania. He is a fellow of the American Academy of Dentistry for persons with Disabilities and is recipient of the Academy's Harold Burke award in recognition of his lifetime achievement in caring for people with disabilities.
He is also most proud of being co-founder of the American Academy of Developmental Medicine and Dentistry. Steve is well-known for founding Special Olympics, Special Smiles, an oral health Initiative that offers free, and, sometimes, life-saving dental screenings to athletes worldwide. Steve Thank you so much for joining us.
Thank you, Jo Ann. It's a pleasure. Like you said, we go back many, many years in the fight to improve quality of life, and, most important, health care for people with intellectual and neurodevelopmental disabilities.
Steve, I want to start broadly when it comes to health care and particularly dental care for people with disabilities. Can you just set the stage for our audience and explain some of the barriers for people with disabilities that they may face when accessing care.
So of all the aspects in health-- well, let me tell you a little how I changed-- my career path changed and led to where I am today, and give you a little bit of the history. So I had been in private practice and teaching in an old school.
By profession, I'm a pediatric dentist. My practice was limited to children, adolescents, and people with disabilities. And my life changed 29 years ago, when I got a call from Eunice Kennedy Shriver to treat her sister Rosemary Kennedy, who was the famous Kennedy sibling with an intellectual disabilities.
And Rosemary had some terrible and severe dental problems and needed addressing. And interesting, that the family sought a pediatric dentist 2,500 miles away to treat a 63-year-old woman. But that's just the indicative of the problems of health care and especially dental care in people with intellectual disabilities.
So based upon my successful treatment of Rosemary Kennedy, Eunice invited me to Washington to talk about dental care for people with intellectual disabilities. And it was an amazing experience for me because here I was face to face with Eunice Kennedy Shriver, the most prominent figure of improving quality of life of people with ID, the founder of Special Olympics, which she is most known for.
But also in the room was her husband Sergeant Shriver, an amazing American hero. And the third person was Dr. Robert Cook, who was the medical director of Special Olympics at the time, 29 years ago. But the founder of Developmental Pediatrics in the country.
We credit Bob Cook with founding. At that time, he was the head of pediatrics at John Hopkins Medical School. So Mrs. Shriver, based on her sister's problems, Mr. Shriver said, OK. Steve, you have two hours to talk to me about dental care for people with intellectual disabilities.
And I said, Mr. Shriver, I don't want to talk about dental care. I want to talk about health care for people with ID. And hear the world's champion says to me, what are you talking about? They get as good or better health care than the neurotypical population.
And I said, Mrs. Shriver, I can't believe that he's telling me that. And she said to me, you know, I've dedicated my whole career to improving the quality of life for people with ID. And I thought, in order for them to succeed, I fought for education first and the highest education that they could achieve.
Then its like what are they going to do when they grow up? Because everybody wants to feel valued. So I fought for job opportunities. And then the third thing was, with the closure of our institutions, I thought about safe housing.
I've never thought about their health. I thought it was as good or better than the neurotypical population. And I challenged her on that. And Bob Cook, Dr. Cook agreed with me. And he said, yes, Mrs. Shriver. They have the worst health care.
So she looked at me and challenged me. And said, I want you to bring health care for people with ID all over the world. And so I said to her, if she would let me use Special Olympics as a soapbox, I would try and do it.
And so that led to me forming the Healthy Ethic program and the Special Smiles program, in particular. And I'm proud to say that it's the largest public health program in the world, addressing health disparities for people with intellectual disabilities.
And we've used that program to capture much of the information because, as you know, all the governments of the world, don't even know how many births there are with down syndrome or spina bifida. But number one, they don't follow the people.
So they don't know the secondary conditions, the co-morbidities, and the problems that people with intellectual disabilities face. And, for example, with autism today, which is one in 54 children in the United States, they have no idea because the diagnosis isn't made until later.
So the program in Special Olympics gives a snapshot shot of the health problems that people with intellectual disabilities face throughout the lifespan. And that led this founding of the Healthy Athletes program. I realized that Special Olympics could only-- we only had eight health disciplines.
And so I knew that I needed an army of health care professionals to help with all the issues that take place, whether it's denied organ transplant, whether it's denied access to specific, there's so many problems that parents and caregivers face. So it led me to co-found the American Academy of Developmental Medicine and Dentistry, which is now the leading organization, the go-to organization.
And because it's multidisciplinary, whereas, the American Academy of Neurology or the American Academy of Cardiology, these bureaucratic organizations are so committee-centered that they never have time to react to the fast decisions that have to be made regarding families in the country. For example, if a child is denied an organ transplant and needs it soon, the bureaucracy can't tackle those problems.
But a renegade, a bunch of pirates that are experts in the field can handle it for families. So I'm most proud of the accomplishments that we've been able to do. For example, during COVID, we were the first group that came forward with the use of--
We knew if there was a shortage of ventilators, who would be the population that gets denied them? Patients with intellectual disabilities. A hospital visitation rights, when nobody could visit or go up in the hospital with somebody, we came up with a policy, end of life decisions, physician decision-making.
So if you go to the ADMD website, there are many public policy statements that we've made. And it's amazing the accomplishments that we've done.
Thank you, Steve. You have laid more than the groundwork for the improvements for people with disabilities. It's remarkable to hear you retell the story, which, of course, I've heard before.
But I'm always in awe of what you've been able to accomplish in the last few decades. And I love the renegade pirate. And it's true that the bureaucracies have really stymied our efforts to make progress.
But you and your army of incredibly dedicated professionals and family members have really changed the world. And you know it's personal, to me. I have a son with down syndrome.
And during COVID, he actually got COVID. And I had to leave him outside of the emergency room at a prominent Boston hospital because there were no visitors. However, I have to tell you that I looked at it slightly differently after I wiped away my tears to realize that maybe what they saw was a competent person, who happened to have down syndrome, who would be able to communicate effectively with his caregivers, and that our fight for inclusion had some success.
And it turned out well for him. But tell me if you have a couple examples of some of the effects of the lack of access to care. I know how prominently you were involved in overturning a decision for a young woman to receive a heart transplant, who happened to have down syndrome. But are there other cases that stand out?
Oh, yes. There was a child in New Jersey, a three-year-old child with [INAUDIBLE] disease and terminal kidney failure. And the parents, both schoolteachers, [INAUDIBLE] number one, and along with Boston children's, always the best ranked Children's Hospital in the country. The child was told by the specialists that she had six months.
The parents were told that their daughter had six months or a year to live. And they went to meet the transplant team. And they walked into a room at Children's Hospital with lawyers, and social workers, and an entire team.
And the head of the transplant team looked at the parents in the eyes. And said, yes, your child needs this transplant to live. But the transplant team deems that her intellectual functioning is low. And they didn't want to waste the time of the transplant team on giving the daughter this life-saving operation, even though the mother was the kidney donor.
And so the parents walked out of the room. Of course, they'd never heard of anything else that anybody had to say. They just walked out of the room. And then they said, how can this be happening in this country today?
And so somebody went on a blog. They contacted me. And said, Steve, what are you going to do about this? And I mobilized my troops. And within two weeks, we had a position paper in front of the Ethics Committee of Children's Hospital that not merely organs were being transplanted, but the dignity and the quality of everything that goes along with it.
And they reversed the decision. The child got the kidney. . She's now a loving member of the family, thriving. The mother brought her daughter to our annual ADMD meeting, and made a speech about how thanks to us, instead of she would be visiting her daughter's grave today.
So a law was passed shortly thereafter in the state of New Jersey that nobody could be denied an organ transplant based on their intellectual functioning. So these are the things that I'm most proud about. But there's not a day in my life that I don't hear another story from another parent, another caregiver.
And, Jo Ann, I brought up the point that dental care is the most unmet mental health care need for this population. And for, historically, for 45 years, I've heard that it's the lack of training that they get in dental school, hygiene school, the lack of training, and the lack of reimbursement.
And It is those that are huge barriers, but there's so much more. It's stigma. It's like, oh, this population isn't worth it. I'm a cosmetic dentist, or I'm an aesthetic dentist, and they don't appreciate anything.
The communication problems, then that's any health care professional. A lot of times, the failure and the inability to somebody communicate. They're often brought in to a visit by a third party. And everybody's busy.
Certainly, with health care physicians are over the top with their electronic medical records and everything. So when somebody presents a communication barrier, it just adds so much more time to the visit. The problem with direct support personnel, the whole field relies on the quality and the abilities of direct support personnel.
But look at the profession. It's 80% turnover a year all the time. So the problems of DSPs, the follow of the insurance companies and Medicaid not allowing follow up care, the transitioning, no matter what you are in from the pediatric world to the adult world, you know.
I've been to pediatric cardiology meetings, pediatric neurology meetings, pediatric dentistry meetings. Adult neurologists treat stroke, seizures, and migraines. And the pediatric neurologists treat entirely different things. So the transitioning is terrible.
Now when you go into a hospital, you're treated by a hospitalist. And they have the least training about people with intellectual disabilities. So what are we seeing? Hospital admissions with our population, and they're either discharged too early without an adequate diagnosis.
Or, they stay in the hospital forever for a condition that's easily treated. The culture of an institution, if a Dean of a school, if special needs isn't on his radar screen, the students are just not going to get the education. Crazy regulations.
I could tell you innumerable stories with regulations like putting sunblock. People in Tennessee where clients and group homes weren't going out on the weekends because you had to be a nurse to apply sunblock. And know the agencies didn't want to pay time and a half for overtime.
And then another huge thing is the accountability. And that's a huge barrier is who is the legal guardianship consent the issues with? I've had nightmare stories myself in my practice that you couldn't even believe what was the problems in ownership, and so on, and so on.
So those are the real social role valorization. In many parts of the world, people with ID are viewed upon as menaces or burdens on society. Why should we have to support them for the rest of their life? And look at what's going on today in Iceland, in Finland with down syndrome? These are perfect examples of social role valorization.
Steve, you've made very important points in the story that you talked about, where a child was being denied a transplant, where the mother was going to be the donor. It shook me to my core because I could not imagine that those things were still happening. Except, I shouldn't be surprised because people with intellectual disabilities have the lowest health status of anybody in the world.
They are nine times more likely to be sexually abused. They're the most underemployed people in the country. They're among the poorest in the country.
And yet, in our current conversation about race, equity, and inclusion, we're, sometimes, not part of the conversation, even though the word inclusion actually came from the disability world. It came from special education. So I think the stories you tell and the statistics you share with us are important for us to remember in this conversation that people with disabilities need to be part of every conversation.
I want to talk a little about medically underserved population because this is something that I think that we really need to work on. And it's interesting that the bill has been introduced by Congressman Moulton, who's our Congressman, correct?
He is our Congressman. For those of you listening from somewhere other than Massachusetts, we are very fortunate to have Congressman Seth Moulton as part of our legislative delegation.
So we realized that this was very important. And we came to our awareness about 20 years ago. Because we're looking at ways to increase access to care within this population. And one of the ways is loan repayment.
So if a population is designated as a medically underserved population, that means that any professional medicine, dentistry, nursing, pharmacy can get loan repayment. And with a rising cost of education for health care professionals, loan repayment is really a critical issue.
But it also involves research and education. So those three things are very important. So right now, so, basically, a physician colleague decided that he didn't want to work in an African-American, Native American health center, Hispanic.
He wanted to work with people with ID. He went to apply for loan repayment. And he saw it that people with ID are not declared a medically underserved population in the eyes of the federal government. So he said, OK, look that the government has a formula for declaring a population medically underserved.
It's based on mortality, morbidity, poverty level, and access to primary care medicine. When we plug-in the numbers for people with ID, they fall way below the other ethnic groups. So we thought it was an easy fix.
The government's formula, we fit all the criteria. And yet, it's been a 20-year battle to try and get this fixed. The government refuses to designate people with intellectual disability a medically underserved population.
So a few years ago, Congressman Moulton brought up the Heads Up Act, which is sitting in Congress right now.
Steve, is there something that our listeners can do to help move this legislation?
Absolutely, they can contact Congressman Moulton, and say that we need to-- and show that there's a groundswell of support for this. It was introduced by him and Harper bipartisan.
The bill is called The Heads Up Act. And we'll provide a link to the bill so that you can have information, so that you can not only contact Congressman Moulton and your own representative to push this forward. Steve, I'm so glad you talked about access to health care because it's remarkable that it's taking more than 20 years to get something so important, so visible, and so a parent passed in the bureaucracy.
And another point on this, Jo Ann, is, I think, one of the reasons is because the gross underreporting, and this is important for every Congressman because if they know how many people in their district that they represent, I think it will change their attitude.
So we always talk about, and you and your work with the [INAUDIBLE] and stuff-- We always talk about a population of 50 to 54 million people with Disabilities in the country, big D. But when we look at intellectual disability, the government has always, always reported around 7 and 1/2 million is the number generally people use.
But we have recently spent a lot of time that it's not that number. It's almost 15 million people with intellectual disabilities. And I've got the documentation for this. Because, number one, children under the age of five, the government lists 155,000 because they are only looking at deaf and blind, under five, deaf and blind.
Other disability, not counting autism and ADHD of people. And now, we're looking at almost 20% of teenagers are taking, and youth are taking medication for ID, so working with the Institute for Exceptional Care. And a physician, Mai, M-A-I, Phan, P-H-A-N.
We're working at changing those numbers because that makes a significant difference in lobbying 7 and 1/2 million. The other pushback, I have to point out that-- and this is surprising. But the other pushback is coming from the big world of disability.
They resent people with ID being carved out as a unique population for benefits. They want benefits similar. And so for the government looking at a population of 10 million, as opposed to 52 million, it really makes a huge difference. But the other point I forgot to make was along with loan repayment, like I said, it's money.
So schools can do higher faculty. They can build special care clinics. And they can incorporate and spend time on curriculum development also with the medically underserved designation.
And right now, for example, if you want to do research in sickle cell anemia in African-Americans, there's plenty of money for that research. If you want to study fetal alcohol in Native Americans, plenty of money for that research.
A critical issue, you want to study aging, and dementia, and Alzheimer's, and people with down syndrome, no, they're not a medically underserved population. So there's no money for research for that.
We have a lot of work to do, Steve. And I know that you're up for the task. And I'm happy to be one of your soldiers. But I want to talk now. You have a new and even greater opportunity to change lives. Tell us about your new role because I know retirement is not in your language.
Thank you. Yeah, so, as of July 1st, I became president of a nonprofit called Project Accessible Oral Health. And it basically has anything to do with the systemic-- the oral health involves so much more than teeth and gums. It involves nutrition.
It involves swallowing, feeding, breathing, people with craniofacial deformities. So tackling, as president of Project Accessible Oral Health, my new job is to work with schools, both in medical and dental education nursing to increase access to care, to provide education for health professionals, working on curriculum development, and to incorporate the worlds of OTPT speech and language.
Your programs at Arc are so inclusive. And there's no population that is more reliant on the health care team than this population. And that's what's lacking because medicine is often so siloed.
And even then, all the health professions are siloed. PAOH is going to act as a convener to bring all the disciplines into using oral health as a platform to promote total health. You brought up the violence and abuse. I just got a paper from Australia the other day that 90% of women with autism have had sexual abuse at some time in their lifetime, 90%.
We have to do work on health care professionals awareness of sexual abuse and neglect. And, also, males are just as susceptible in this population as females for both domestic violence and sexual violence.
Well, I thought we were going to talk about some progress. So I still want to get to that. But I know that there are a lot of challenges that lay ahead for this group of people who we have dedicated our lives to. So--
[INTERPOSING VOICES]
--a little bit of progress.
I can talk to you about a giant win, OK. So for my whole career, as I said, dentistry is the most inaccessible and unobtainable health care need for people with intellectual disabilities. So, years ago, I testified.
And I talked about the barriers to care. And I talked about the reasons, predominantly, lack of education and reimbursement. So years ago, I was able to testify before the president's committee for people with intellectual disabilities, and found a gentleman who decided to become a champion.
And I'm proud to say it's Jim Brett from the Boston area. And Jim Brett is an incredible human being, who at that time, was president of the president's committee. And Jim heard us. And he listened to us.
And so, in his new role, he left. But even then, he couldn't move the bar for us. But then he moved to a bigger position of power in the country on the National Council on Disability.
And he called me up. And he said, Steve, I think now with my new role, I think we can help fix your problem. And so we were always-- I didn't know how to navigate this and the frustration you'd think.
So early on, we realized that, for example, the dental school curriculum, the dental school curriculum had nothing in it about educating dental professionals about patients with special needs. We thought that was an error by-- it was an error.
And it was omitted. So we petitioned the council to change curriculum requirements. The first year, we proposed that we defeated terribly. Second year, again. Third year, we say what's going on? And the schools, basically, said, we don't have the faculty to teach it.
And we can't make any money on the patients. So they settled on diagnosis and treatment planning only, which meant that a dental professional could graduate school without any hands on experience or clinical training. And so that existed, and we fought it consistently.
And Jim Brett, finally, he said, I got an idea. So the attorneys for the National Council on Disabilities indicted the dental profession for lack of access to care and got them a simple fix, but only the lawyers could have done it. So previously, the code of ethics of the dental profession said that a dentist could not treat a patient, not refuse to treat a patient because of age, gender, sexual orientation, yada, yada.
And that was it. So the parent or a caregiver would call up and say, I have a 30-year-old son with cerebral palsy, or whatever it was. The answer was always I never got any training in dental school. I don't feel competent doing.
Good luck trying to find somebody. They got the American Dental Association to insert the word disability in the code of ethics of the dental profession. That simple addition of one word opened up everything that we needed to get done.
Because now, schools had to train competency, not only diagnostic and treating. So I have to say that's been one of the biggest, but it shows that advocacy can work. You just have to find the right people. And, of course, you have to have the documentation that proves the point that you're trying to get. So Jim Brett is my hero in actually fixing--
So Jim Brett is one of our heroes, as well. And he is president and CEO of the New England Council. And in May of this year, President Joe Biden appointed him to serve as the chair of the President's Committee for People with Intellectual Disabilities.
And I am also honored to say that Jim Brett is a member of the advisory board of the Northeast Arc and a lifelong champion of people with disabilities. And you'll be hearing from him on All Things Disability, as well. So, Steve, I spent many hours in your waiting room.
And one of the things that I noticed. And I know about you, in addition because you cared for my children's dental needs, was that you were an inclusive practice. The children that came to your practice were speaking many languages in an urban city.
They were most often receiving public assistance for their health care. You were reimbursed at levels that most dentists walked away from. What made it that you wanted your practice to be a practice that didn't turn away any child, regardless of the language they spoke, their disability, their economic level?
And was there a moment, or was there a time, or were some examples, or were you always just an amazing marvelous human being?
No, no. I think, you know, something people say to me all the time, like, oh, do you have a family member or anything like that? But we're a person based on our life experiences, you know.
With people with problems now, the big buzzword is ace. You're being is adverse childhood experiences that you have. And so, for me, the turning point in my life was when I took a job-- when I was a junior in college, and that was a long, long time ago.
I took a job in the Department of Psychology. And my job was to find-- and those-- this goes back to 1966. So this was a long time ago, when I was in junior college. And my job was to find work for the homebound worker with a disability.
George Washington University, where I went, the Department of Psychology got a research grant. And the person in charge of the grant, my mentor, was a gentleman with spina bifida. And he was a total quadriplegic.
But he had a master's degree and very intelligent. And I would be his eyes and ears. And so our project was, in those days before computers and everything, I would go into the homes of people and deliver a non-verbal psychological test to see if they were candidates for this project.
And one of the turning points of my life was I had to interview a man my age who was in an iron lung from polio. And for those of you old enough to remember what iron lung and the scare, the kids in the summertime, going to camp, and everything, polio before the vaccine. And so I had to interview this person upside down in this iron lung.
And just through the whole interview with him and working with him, this could have been me. And so I just decided, at that time, I knew I wanted to go into dentistry. And at that time, if you wanted anything to do with special needs, only route that you could go was pediatric dentistry.
And so that's how I started my career. But I also had a neighbor who had a child with cerebral palsy. And I now remember them growing up, had them telling me that nobody would make them come after hours because they didn't want anybody in the waiting room.
They didn't want them in the waiting room. And look at dentistry today. Nobody likes going to the dentist, for sure. Nobody likes getting the bills from the dentist, for sure. But the practices, or muzak-- Everybody is a cosmetic dentist, everybody that's a dental spa. Nobody wants to hear the behavior or look at people that are different. So my decision was to have an inclusive practice.
As a parent or caregiver, if you didn't like being in the waiting room in that environment, then there are plenty of other people that could treat you, so--
I can interrupt to say that I know personally people who would drive hundreds of miles to be treated by you because they trusted nobody else. And you are continuing to have a remarkable career to changing the world. And I want to thank you again for joining us.
Dr. Steven Perlman is an extraordinary friend, professional, and game changer. And you can find more information about his work in the show description. We want to thank Peabody TV for providing our wonderful recording space.
And All Things Disability is made possible through the financial support of the Changing Lives Fund, which was created through a generous gift from Steven Rosenthal. To learn more about the Northeast Arc and to find past episodes of this podcast, please visit any-arc.org.
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