We are excited to share our recent conversation with Dr. Steven Perlman. Dental care is a leading unmet healthcare need for patients with physical and intellectual differences. As a pioneer in advocacy for people living with a disability, Dr. Perlman is passionate about making dental care accessible for everyone.

Watch the video of our online chat or read the transcript below.

‍

‍

Jill Malmgren:

Hello, my name is Jill Malmgren, executive Director of America's Tooth Fairy. We are so delighted to have you here with us today as we have a very special guest. Dr. Steven Perlman is a clinical professor of pediatric dentistry at the Boston University Goldman School of Dental Medicine. For the past 40 years, he has devoted much of his private practice as well as his teaching to the treatment of children and adults with physical and intellectual disabilities. Dr. Perlman is a past president of the Academy of Dentistry for Persons with Disabilities, the Massachusetts Academy of Pediatric Dentistry, and the American Academy of Developmental Medicine and Dentistry.

Well, I am so grateful that you made a little time for us today. So just want this to be... already recorded an intro for you and your just lengthy accolades. My goodness, you're a pretty amazing individual inside and out.

Dr. Steven Perlman:

And I go back, well, you know what? I'm looking at the stuff because I crossed, I started out in pediatric dentistry and then crossed into public health and then crossed into humanitarian stuff. So the awards go from, to me, they're special because they're out of the box. It's the humanitarian award from the AGD. It was the first time they ever gave it to a specialist. You know what I mean? That wasn't in their group. And I even have, there are 1,000 physicians on my hospital staff, and I got the physician of the year award, and when did they ever get, and it was like, what? We're giving this award to a dentist? And it was the head of cardiology that gave me the award. And he said, "I save lives every day." But it's the beauty. I mean, that's my most proud thing is that it crossed into the other disciplines.

Jill:

Absolutely. No, that award I found quite impressive.

Dr. Perlman:

Yeah. And I go back with you guys forever. I mean, my history with the organization goes back many, many years ago, so.

Jill:

Absolutely. Well, tell us what inspired you to become a dentist?

Dr. Perlman:

Something, I don't really know what ... I don't remember what, because my dental experiences as a kid were awful. I remember going to the dentist and I remember he gave me, I don't know if they're not around anymore, these little metal clickers, and it was a frog. I'll never forget it because it was so traumatic. And he told me that all I had to do, I must've been about seven or eight or maybe, he said, "All you have to do is click it and I'll stop drilling." He probably didn't even give me Novocaine. And I remember laying back in the chair as a kid, clicking away like crazy, and he never stopped. So I had a pretty traumatic experience, but when I was in college, I was pre-dental and a psych major. But that was the thing that changed my life, because my exposure to people with disabilities prior to college was I had a neighbor who had a daughter with CP, but in those days, you lived in ... They were in the closet.

The child never came out. The mother was chained to her house basically every day, never interacted with the other families. I grew up in Brooklyn, New York, never interacted. And I remember that her telling that my mother, that she always had to go to an appointment for whatever it was after everybody was there, and stuff like that.

And in my junior year in college, I was a psych major and I got a job, I went to George Washington University and I got a job in the hospital, in the psych department. And the person that I worked for was a rehabilitation psychologist, and he was a quadriplegic. He had spina bifida. He was very smart, but he could not physically, he could not do one ... The only thing he could do was operate an earlier, I mean, this was '64, '65, this is the mid-60s. The only thing he could do was move a finger and he had an electric wheelchair, but he had a master's degree. But every day he would have to have a nurse go to his ... He lived independently. It was incredible.

Jill:

Wow.

Dr. Perlman:

Every day. And he was so contorted, and every day he had a nurse come to his house and would put him into bed, get him up in the morning, shower, put him in his wheelchair, and he would motorize. He lived across the street from the hospital and he would do his job every day. He was an amazing inspiration. So I worked for him as a research assistant. And our job at the time was to find work, the '60s, so work for the home bound workers. So in other words, people that either had a birth defect, spina bifida, muscular dystrophy, anything like that, or a traumatic incident, car accident, whatever it is. And the government was looking, this was before computers and stuff. It was like, what can that person be? How could he be productive for the rest of his life?

So I would go into the—because he couldn't get around—I would drive to people's homes and administer them the Raven, which is a non-verbal IQ test, and then we could see what would be suitable for them. But the turning point for me really was I had to go to visit a young man who was exactly my age in a rehabilitation center. He had polio and he was in an iron lung. Do you remember the old pictures of iron lungs? And I'm interviewing him and asking him questions, and he's staring at me in a mirror looking up at me in this iron lung. And all I could think of, geez, for one exposure to the virus, it would be me in that iron lung. And so I decided that, after two years of working with him, I decided whatever I was going to do in dentistry was going to be people with disabilities.

But in dentistry at that time, and still today, if you want anything to do with disabilities, you can only do the pediatric route. And so I had to do that route. So I went the pediatric route and to this day, I mean, the only exposure that you get is if you're doing maybe an AGD or GPR program. But if not, it's still, pediatric dentistry is the gateway to working with people with disabilities. So that's my history of working with people ...People always say, with your whole career, do you have any person in your family or sibling? No, it was my college experiences, which just demonstrates that exposure to this population can be life changing for many, many people.

And that's why when I created this, when I was asked to create a program for health in Special Olympics, the next part of my phase in my career was split in different ways. First of all, my entire 45 years in practice was limited to dentistry for children, adolescents and people with disabilities. Old school, pediatric, we took care of people from birth to death. There was no transitioning. Now it's an age defined specialty. And so the pediatric dentists really see patients only up until the age of 14, which we're fighting. That has got to change.

Jill:

Yes. I think that once, if they are fortunate enough to find someone to care for them to that age, then we lose them after that point because...

Dr. Perlman:

The profession said, "Oh, don't worry about it. It's just they'll transition into the adult offices." But there is no transitioning. And why is medicine, pediatrics in medicine is not an age defined specialty. And when I called the pediatric, the Academy of Pediatrics, when I called them and discussed it's like, well, why would we want an age defined specialty? The relationship between a health provider and a family or caregivers has got to be on an individual basis. We would never set an age limit. So that's a whole fight that you and I are going to tackle together.

Jill:

Well, I'm very honored and proud to be working with you. And so excited, and certainly with our engagement with PAOH, which is Project Accessible Oral Health, of which you are the current president and I'm serving as treasurer. So very excited to, as our organization, have America's ToothFairy work with PAOH to help address this issue and provide critical resources to help increase access to care for people with disabilities. Now-

Dr. Perlman:

I'm also very proud of your organization's relationship with AADMD.

Jill:

Thank you.

Dr. Perlman:

And it's funny because the other day I was on the phone, I was on a board call with another organization and a very prominent person in dentistry, and I can't say his name because it was ... And he said, "I've been pushing for collaboration between physicians and dentists my whole career, and it doesn't exist and it still doesn't exist." And I said, "You know something? 22 years ago, we founded the American Academy of Developmental Medicine and Dentistry." So there is an organization which is doing amazing things, which is fully integrated between not only medicine and dentistry, but all the other, the Developmental Disability Nurses Association, with SLPs, with nurse practitioners. So there is that organization that exists, and I'm very proud of you coming to our meeting every year, representing your organization, and being part of the coalition that we're building.

Jill:

Yes. That is pretty magnificent, especially because, to me, it seems engagement with that organization, the silos are removed, we're all working together. And I think being able to bring together medicine and dentistry and take care of the whole person, the whole individual, is what we need to do and to be able to make a difference. And I know for us, we have our space, being able to provide resources and organizations like ADMD and PAOH create an opportunity to collaborate and better serve those populations. It has certainly opened up doors for us in being able to provide essential resources to organizations or clinics and facilities that are taking on these patients with disabilities and providing exceptional care. And we see that growing. We're looking to expand our Special Kids Program and looking to focus on creating resources for dental professionals, parents, caregivers, and of course children. Our initial focus will be on kids with autism, creating those resources to help improve their own care and ultimately create better oral health outcomes for those kids.

Dr. Perlman:

I'm so happy about their relationship because I realized with the, first of all, we're all so siloed today. But I realized that we needed the collaboration of the physicians because as a dental organization, and certainly within Special Olympics, when a family needed, if the child needed an organ transplant or the child had a syndrome, or a craniofacial, whatever it is, that the person, the expert is in another state and the insurance company... I mean, there are so many barriers to care. You and I know there are so many barriers to care for families of people with disabilities. And a dental organization alone could not do the things that AADMD in collaboration with you can do. If you find in your work, in your network, if you have a child that was denied a procedure because of the level of functioning, whatever it is, we can work together and make sure that we've reversed decisions of major medical institutions and reversed decisions based on our petitioning for them.

And focusing on kids with autism. In 2000, I was just looking at my numbers, the other day in 2000, there was one in 150 American births of diagnosed with kids with autism, one in 150. Currently the latest report, which just came out from the CDC, is one in 36. There's no other anything like it that's changed. In 2010, I mean, it seemed one in 68, but look where we are now, one in 36, the report that just came out several months ago. So how many families are now affected? And three to four times as many boys as girls, everybody, we don't know the answer. We don't know the answer why. You know, better surveillance better ... Now you want that. When I started training, nobody wanted the label of autism because it was the refrigerator moms and the monkey experiments. Now, if you don't have that label, you don't get the services. And it's very difficult to provide all the multitude of services that kids with special needs really need.

Jill:

Absolutely. Now, what advice would you have for your fellow colleagues in addressing the oral health needs for this important population? What would you share with them to encourage them to care for them or overcome maybe obstacles that might be serving as a barrier for them are causing hesitation to give care to this population?

Dr. Perlman:

Something forever ... I mean, at least the first 30 years of my career, I always heard the reason why dentists don't treat patients with disabilities is because they don't get any training in dental school and there's no... levels of the reimbursement are terrible. Those are the two things, but you know something? There's so much more than that. It's stigma. Look at the dental profession, everything. It's like, oh, cosmetics and the younger generation, they want to get into implants and bleaching and all the cosmetics and forgetting that it's also a healthcare profession, but it's so much more than that. It's stigma. It's like, oh, they're not worthy of my time and my effort. In my career early on I was told that, oh, you treat people with disabilities because you're not good enough to be a cosmetic dentist or something like that. So it's the stigma, it's a low ... And look, my work in Special Olympics took me to 170 countries, and it's like in certain countries it's a curse that you have a child with a disability.

I've been told by students I had, I teach pediatric dentistry, and I was told that we don't have that problem in my country because we take the kids down at birth and we drown them or something like that. So these still go on today. So it's the stigma that that population is not worthy of it. It's communication problems. Not only in dentistry, but medicine. Think of the ophthalmologist that's trying to do an eye exam on somebody and they don't understand the directions, they don't understand the words. So it's communications problems. It's a high, and for adults that live in group homes and community residents, it's a high turnover in staff with direct support. The people that take care—if they're aging and they don't live at home and they live in a community setting, like a group home—there's almost 70% turnover of staff per year.

So and that social role valorization that society in general, they look at people with disabilities as wholly innocents, not contributing. They don't pay taxes. It's a financial burden to take care of them. And then accountability and guardianship, the issues that face healthcare professionals. I've had dozens of stories that were nightmares about actually trying to provide care, and the barrier that comes is guardianship, accountability and things like that. And then as far as the medical side of it, the changing face of healthcare today, when you go ... These people are victims of diagnostic overshadowing is a big thing this year.

It's the sentinel alert from the federal government and diagnostic overshadowing, there's no other population that faces misdiagnosis and poor treatment because of diagnostic overshadowing. Diagnostic overshadowing is somebody who has a disability and then all the problems that are associated with it just go under the lump. "Oh, they have autism" or, "oh, they have cerebral palsy." Yeah, we know that, but their behavior has changed. And it's usually an underlying medical diagnosis, that's the cause of that. And toothaches are a prime example. So just nobody thinks to look in the mouth as to a behavioral issue that changed. Constipation, number one, earaches and dental problems. So the problems that these families and caregivers face is really tough, but we don't give up the fight, and we're certainly trying to take care of that.

Jill:

And I think too, you've outlined several of the challenges associated with providing care, but there's a huge reward too. I would imagine being able to provide care for those families must mean the world to their caregivers, and siblings, and parents. Being a resource for them, and then also to really impact their life.

Dr. Perlman:

And the answer, there's been talk for many, many years, there's been talk about making and can't, we're not supposed to use the word special care anymore, special needs because everybody has special needs. So for people with disabilities, do we need a specialty? And that's the worst thing that could ever happen because realistically, there are 52 million Americans with disabilities, roughly 52 million. And this is a bone of contention, is people with intellectual disabilities. The government reports it at 7.5 million. But we really know it's like 12 or 13 million because children under five, it's only blind and deaf that's reported, which is absurd, but that's not an easy fix because that comes from the Census Bureau. So even though we're trying to work with government agencies to get a realistic number, the government, we can't do it because kids with autism, for example, look at the numbers one in 36, but if they're not diagnosed 'til two or three and they're not counted in the census, then those numbers are so far off.

But I think that we're really looking at about 12 million people within intellectual disability. And look at the new report on AB. We just got, actually, it just came out and I just want you to take a look at, because I'm going to screw it up, but the CDC just came out with report this month that the incidents of children with disabilities in the United States from three to 17 is on the rise. And in the last two years, between 2019 and 2020, it went up a point and a half for the incidences of disabilities. So we've been looking at a population that's rising. And again, so with these numbers, back to your question, it can't be ... This is every healthcare professional's problem. It cannot be, oh, what 200 or 300 specialists are going to treat 15 million people? No. So it can never be a specialty. It's everybody's problem.

And the way you learn it, seriously, I have a textbook that they use in many dental schools, but don't even buy it because you don't learn anything until you do it yourself. And everybody's going to have failures, but they'll have wins too. And it's a learning curve. The more patients with disabilities you see, the more success you'll have. And I want to, one of the points that I really want to make is from having an extensive career in this and working with many other people, 90 to 95, 90% of people with disabilities could be mainstreamed through any office with the most minor modifications. Maybe another 5% may need some form of sedation or medical immobilization, protective stabilization. But operating room utilization should not be more than one to 2% of this whole population.

And if the operating room is used from ... I mean, my model in dentistry was if I'm admitting ... If I can't fix their oral health in a conventional setting or with medical immobilization or mild sedation and I have to go into the hospital, then my first call is going to be to a primary care physician. Because if I can't fix their teeth, nobody else is looking and cleaning out their ears or getting the required colonoscopies or endoscopies or gynecological visit, anything else. So that's where inter-collaborative, I don't think there's any field in dentistry where inter-collaborative medical care is as important as people with disabilities.

Jill:

And it really speaks to the drum we're all banging about. The mouth is the gateway to the body and how oral health is linked to overall systemic health. And I think that collaboration just ultimately fosters an appreciation for the expertise in everybody's field and understanding of how and why we need to work together to make sure that we can protect their health and do all we can to make sure that they can thrive and have a meaningful life. So really can value all of all that you have done to foster that. And certainly with the AADMD and PAOH, those are resources as well for dental professionals that are looking at this. We have the All Smiles Shine app, which shows a desensitization process, that makes it very easy for both the professional as well as the caregivers to prepare a child or an adult for care in the dental practice.

And as you said, there is a significantly high percentage, the majority can be seen in those conventional practice settings, and there are resources available. And we are also planning to add to that in the coming year with development of resources too, that my hope is that we can then be recommending AADMD, PAOH and also our resources to help provide everything that the professional needs, the caregiver needs, and the individual with disabilities, their needs as well, so that they can take charge of their oral health and have a healthy smile. Now talk to me a little bit about your current role with PAOH and maybe a goal you have for that organization.

Dr. Perlman:

Yeah. Well, we're still trying to, as a close board member, I work with you all the time and we're trying to figure that out. So one of my goals is to, it's supposed to be a collective catalyst to bring public and private partnerships together. And that's one of the things is that we're so fragmented. So one thing in particular is people with craniofacial differences, of which there are plenty, there are different organizations. Children do get care, but then they totally fall off the cliff when they're adults and they don't have a home in dentistry. The pediatric dentists take care of these people and then they kind of drift off as the ... There's no transitioning for them. And then when they're adults, there's certainly no care for them. So I'm looking at PAOH as giving a voice to people with craniofacial differences.

I'm also looking as, I became aware of it in my global work with Special Olympics is there's a practice in Africa called infant oral mutilation. And I was involved at the time with the Chief Dental Offices of Africa. There's a doctrine that was passed and we were trying to end tens of thousands of children with disabilities and neurotypical children are dying because of this old practice, and it's a cultural thing. But the chief dental officers in the region want to eradicate infant oral mutilation. They take out the primary cuspids, the tooth buds, when the children are five to 15 month sand they pack it with dung and the kids get terrible oral infections, and we can't seem to control it. So working within the ability of working with PAOH to try and do that too, and reduce, end the disparity.

So basically, I think it's ... Oh, and I see working PAOH as a political group too. There's a bill before, there's actually two bills before Congress right now. Senator Casey from Pennsylvania is introducing a health equity act, and we have the heads-up act that Congressman Moulton in Massachusetts brought up, both trying to provide better and equitable healthcare. One of the problems that we're facing, and that this is, I see a role of PAOH and convener too, is that people with intellectual disabilities, even though they are documented, according to the government's own formula, they're the most medically underserved population. The federal government has not designated people with IDD as a medically underserved population. And what does that mean? One of the prime things is as long as you're not defined the medically underserved population, you can't get loan repayment. So if a medical, dental, nursing, pharmacy, whatever it is you go to and you want loan repayment when you graduate, and you finish your training.

If you want to work with people with disabilities in a developmental center or something, no loan repayment because the government won't acknowledge them as a MUP. If dental schools are medical, they want to hire faculty, they can hire minority faculty, but they can't hire faculty to teach special needs to people with disabilities because they're not a medically underserved population. As well as research, if you want to study fetal alcohol in Native American reservations or African American health centers with sickle cell anemia, yeah. You want to study aging and decline in Alzheimer's and Down syndrome? No. They're not a medically underserved population. So this is one of the other main focuses with PAOH, as I see, is the support and help the legislation to designate them a medically underserved population. We discovered, AADMD discovered this in 2004, and we got the American Medical Association in 2010. The AMA officially designated people with ID as a medically underserved population, 2014 American Dental Association did it. And yet we can't move Congress to do it. So that's another big focus.

Jill:

That is so important. I know we have worked with students in the past, and even your own story, your own story is indicative of the impact you had in engaging and working with that population and helped you develop that passion to be able to address that. But then without that caveat of having the opportunities provided by loan repayment, it keeps them out of that space even though the opportunity for inspiration and to instill that empathy and care for this population is there for those students.

So as you're talking about this, we had worked with Tufts University on a project that was three years running, and it was about creating resources for students and families for kids with autism and all centered around oral health. And it was so exciting to see this project grow year over year. So as you're saying that, that might be an opportunity where we can help with PAOH and maybe partner on some initiatives where we engage students to be mobilized and then continue to work and see what we can do on the other side with government, to encourage them to make the changes necessary to address this growing and very important population.

Dr. Perlman:

Oh yeah. And like they say, as a healthcare professional, if you've seen one child with autism, you've seen one child with autism. They're all different. And that's why the need for healthcare providers to just treat as many as they want, as they can possibly. We did have the biggest win we ever had, because for years, and it just shows you how advocacy, policy, and coalitions can work. That getting a patient forever, we heard I brought up before when we were trying to get ... Okay, so we can establish, we don't need any more government studies and we don't need any more studies within the president. Oral health is the most inaccessible healthcare for people with intellectual disabilities. Let everybody save the money on the meetings, the bagels, the notepads, this is clear after all these years. When I hear they want to do another ... When they want to do another study, another study, what for? It's going to show the same thing.

In the largest study the government ever did, 39,000 families with children with special healthcare needs, oral health was the most inaccessible thing, other than prescription medication. That has not changed to all these dates. And moving the bar was so hard. And so all we ever heard, like I said, when countless parents coming back to us in all these different, whether the pediatric dentist, your group, the group that you represent, all you hear is no access to care. No access to care. So we always tried to change... We don't know why the dental profession would push back on us all the time, but it was always the same thing, lack of curriculum in dental school and lack of reimbursement for providers. So we could never fix it because we could never... The dental schools refused to change the curriculum because like I said, we don't have faculty and we don't make any money in the schools.

So we're not providing the education. So we consulted with the National Council on Disability and their attorneys figured it out. They said, "We are going to make the dental profession change the code of ethics." So a dentist, when he graduates, the code of ethics of the profession, instead of a dentist cannot refuse to treat a patient because of age, gender, sexual orientation or whatever. That was it. The National Council on Disability, NCD, made the dental profession insert the word "disability" into the code of ethics. So now it can't be diagnosis and treatment planning, which was coded forever. Now the dental schools, because of that change in the code of ethics, dental schools, hygiene schools must train competency. Huge difference between diagnostic and treatment planning as opposed to competency. So that working together with organizations like yours, with organizations, with our medical counterparts, that we got the code of ethics of the dentistry changed. Nobody knows that story, but that's how it happened. It was strictly us that did it.

Jill:

That is incredible. And what a movement that you guys have created and so valuable. And it has been exciting. It seems like although it can't move fast enough, progress is being made. And I feel the more partners and people we involve in this is we can see how far we can take it. They do deserve our care. They are worthy and so important and do provide, they do contribute to our communities and our lives. And I think there's just a lot of opportunity to really make a difference for people here. Certainly with people with disabilities, but also for those providers as well. I think being involved in that, it is a life-changing experience and can really open your eyes. I know myself, I've never met more wonderful people or smiled so big than when I'm able to engage with that population, it really is quite special. So certainly encourage providers that are watching this to take that chance, help that patient. You might be surprised how much they help you.

Dr. Perlman:

Well, I'll never forget how we first met, you had just taken over as executive director of the organization and we talked to each other on the phone, and I threw out an invitation for you to meet me in Minneapolis. I think we met in Minneapolis together. And that was your first exposure to Special Olympics Healthy Athlete Program and Special Smiles. And I'll never forget seeing that smile on your face and how hard you worked, and it was an incredible ... Those are the experiences that make it life changing for everybody.

Jill:

Absolutely. That was the spark that lit the fire, and it really was incredible. I mean, I always tell people, I'm like, "It is so rewarding." And yes, there's certain challenges in trying to find the best ways to help this population, but it's worth it in the end. You can really, really impact someone's life and as well as the lives of those individuals that care for that person. Because they're often frustrated and fighting that fight alone, and it can be a lonely ride. So it's wonderful that the providers and those of us in organizations that can also help contribute, we can all work together to make this a much better situation for everyone. Do you have any parting words or closing words that you'd like to share?

Dr. Perlman:

No. That it's just been great working with you all these years. We've had great projects together and the answer, it's great to have you on the board of PAOH with me for the ride. And it's just that, yeah, we know what needs to be done and we're working with all the play ... We've got the great team together now. For the first time we made history, AADMD, you were at that meeting and the chance to witness the American Medical Association, the American Dental Association on the stage, the presidents of the organizations moderated by the National Council on Disability, and for the first time really serious inter-collaborative, working together on how this is everybody's problem.

This is every ... One in 36 now just with autism. It's everybody's problem. And we have to fix this, but for the first time I'm seeing we're working with Medicaid and Medicare and CHIP and government agencies and look who was at our AADMD meeting. We had the CDC, we had maternal and childcare, we had people from American College of Gynecology, we had the pediatrics, we had all the ... Really, we've got the army. It's just now we need direction and unified, that's the thing that we really need is unified, we can't ... We need a unified approach. And I think we're on the right track now. So thank you for being part of my team, my life and everything that you do for us.

Jill:

Oh, thank you. I'm so honored to be able to work with you as an organization. We're proud to partner with both AADMD and PAOH because you guys are the experts and we can all help each other and fill in the gaps to make serious change. And I agree with that unified approach. That is what we need and we're on the right path now. So thank you so much, Steve. I appreciate it.

Dr. Perlman:

Welcome. It's great to see you and thanks for all you do for us.