Exceptional Care for the Neurodivergent, with Dr. Hoangmai (Mai) Pham | EDB 291

IEC founder Dr. Mai Pham discusses their work transforming healthcare for people with intellectual and/or developmental disabilities.

Hoangmai (Mai) H. Pham, MD MPH, President and CEO of Institute for Exceptional Care (IEC), is a general internist and national health policy leader and mother to two beautiful young men, one of whom is autistic. Dr. Pham was previously Vice President, Provider Alignment Solutions at Anthem, Inc., responsible for value-based care initiatives at the country’s second largest health insurance company. Prior to Anthem, she served as Chief Innovation Officer at the Center for Medicare and Medicaid Innovation, where she was a founding official, and the architect of Medicare’s foundational programs on accountable care organizations and primary care. She has published extensively in the medical literature on provider payment policy and its intersection with health disparities, care coordination, quality performance, provider behavior, and market trends. Dr. Pham serves on the boards of Atlantic Health Systems and the Coalition to Transform Advanced Care, and the National Advisory Council for the Agency on Healthcare Research and Quality. She also serves on Faculty at the Institute for Healthcare Improvement. Dr. Pham earned her A.B. from Harvard University, her M.D. from Temple University, and her M.P.H. from Johns Hopkins University where she was also a Robert Wood Johnson Clinical Scholar.

For information about Institute for Exceptional Care, visit: https://www.ie-care.org/ 

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HR:  Hi, I’m Dr. Hackie Reitman, and welcome to another episode of Exploring Different Brains, and today I’m excited to have with us, Dr. Mai Pham, the President, CEO and board member of the Institute for Exceptional Care, which she’s going to tell us all about. And Mai, I hope I’m pronouncing your name correctly.  

MP:  You’re doing it perfectly. And I’m so honored to be here.  

HR:  Well, we’re honored to have you the honor resides. So tell us about the Institute for Exceptional Care. Educate us.  

MP:  So IEC a young nonprofit, we’re about two and a half years old. And we were founded with a mission of making health care safe and inclusive for people with intellectual and or developmental disabilities, so they can leave live their best lives and thrive. Basically, what makes us unusual in the disability landscape is that many of us come to this work from health care. And we’ve had to learn the disability part. We have spent decades doing work in the public sector in the private sector in health care as clinicians as government leaders as insurance leaders. And we also have the lived experience many of us of caring for loved ones with IDD. And this is our effort to leverage all that healthcare expertise to make a better world, for our family members and the other people that we care about. So what we do and Hackie stop me anytime. And, you know, depending on what rabbit holes you want to go into, but what we do is we really focus on three things: making sure that the general clinical workforce, so not the IDD specialists, but all the other clinicians are culturally prepared and clinically prepared to serve our population.  

We also promote models of clinical care that we think really get at the needs of what community members want. We try to promote those and elevate those and help them scale. And then thirdly, we are particular experts in how money flows in healthcare, how services get financed, how service providers get paid. And we know how to influence government, and the organizations that pay for health care, so that they can use their significant financial influence to shape how care is delivered. So those are our three areas of work. And I’m happy to share about individual projects. But I would say the last and probably the most important thing to know about IEC is that we start with community. So we bring in people with IDD and family members to every single one of our projects. They are often in leadership roles, and/or advising and are co authors. And of course they are participating as well. But What’s unusual is that we put them in the same usually virtual room with healthcare decision makers who are not used to sitting in the same room with community members. And that makes for some really interesting conversations. But that is how we do all of our work is through these kinds of coalitions and we coach all of those partners and how to work together and and find, you know, the goals they want to work towards and then solve the problem.  

HR:  Well, you’re a mom. Yeah, as I said, my book Aspertools: Mothers, particularly mothers of people with some intellectual disabilities, are angels with a pitbull mentality.  

MP:  We are to be feared.  

HR:  I’m glad you put it that way. And you are tremendously educated and you’re involved in so many different ways. And you yourself have two sons, one of whom is autistic. Okay. So in your organization, you have mothers who have children who are autistic, you have self advocates, and you have what I’ll call for lack of a better term civilians. Well intentioned. What is the one thing about your organization that you think might surprise our audience?  

MP:  What a great question. I think they might be shocked to know that we only have six team members. We get an awful lot done with six people. And that’s frankly, because we have built so much trust in both health care and the disability community, that people are tripping over themselves, to help us out, to teach us to work with us. And, and to, you know, tell us when we’re getting the wrong. Maybe people would be surprised to know that we do a little happy dance every time someone from the community told us about something we did wrong. Because to us, that means like, yeah, see, now we know something new now we’re going to be better. They think we’re crazy. But that’s honestly how we react. And I think that that is really shocking for a lot of the disability community because they are not used to health care people reacting that way.  

HR:  Now you have a history with the provider payment policies role in all of this roadblock to care. Educate us on that.  

MP:  Right, so I am a doc. I am a primary care internist. But I also spent quite a bit of time in my career doing research, and a lot of that research was focused on how doctors, hospitals, other health care providers respond to financial incentives. And then I went into government and in government, I was responsible for running giant payment experiments for Medicare and Medicaid. So what I see when I look at how healthcare is currently offered to people with IDD is I see basically that people with IDD are invisible in healthcare. Their conditions are very poorly documented in healthcare data, which means on a day to day basis, doctors, hospitals, insurance executives, don’t think that this is a big issue. And not only do they not think about it enough, they have very outdated assumptions about the IDD population. And they don’t understand that just because you don’t see the IDD doesn’t mean that people aren’t there. They’re there. They’re showing up in your avoidable emergency department visits, they’re showing up in your avoidable mental health crises. And so to me, the opportunity is to fix the data to update people’s assumptions and understanding of IDD, and then show them by measuring what the outcomes are for the whole population of IDD and link those outcomes to the way you pay the service providers. If you if you work toward improving outcomes for this population, we, the insurer or Medicaid or Medicare will reward you. That’s grossly oversimplifying it.  

But you know, that last piece of how to reward them, how to do the number crunching, how to build the payment structure. Those are things are actually relatively easy. Seriously, you give me 30 minutes in a dark closet, and I can come out with some options. But we can’t get there at all, when there is so much culture change to make happen first, when we have to fix the data when we have to update those assumptions. So that’s the kind of work that IEC engages in, even as we’re also working in other projects on the ground, where we kind of start at the other end. We kind of, for example, in our project on Long Island. We are working with a multistakeholder coalition to solve the emergency department problem, which you know, is a terrible place for people with IDD. It’s dangerous. The clinicians are harried. It’s a stressful environment. And when a person is stressed, they have even less ability to communicate and advocate for themselves. And plus those clinicians barely get any training and IDD. Well, you know, there we actually kind of started with okay, what are the solutions? And then we’ll figure out the payment. And, and that’s exactly what’s happening. You know, they are coming up with solutions like a tool that we call the digital snapshot. We’ll come up with a cuter name for it, but it’s like an app on your phone or your iPad, where you can show the clinician: Look, this is me at my best click this video. Oh, see, I’m happy enough athletic, here are my anxiety triggers, here are ways to calm me down. I like music, click here for my tunes. Well, as we’re building that tool, the insurers are at the table, the emergency department teams are at the table, the community members are at the table. And, and then it’s natural for us to turn to the insurance and say, Gee, when the grant is done, would you be willing to pay for this. And so we come at, you know, the problem from multiple directions. But it’s always with this, eye of how preparing the clinicians, and getting the payment and financing right, and figuring out what the right way is to deliver care, they all fit together, they’re kind of like gears.  

MP:  And along the way, you show the insurance company, how they can improve their bottom line.  

MP:  Exactly. That is — we know, in our gut how important that is to them, they find it much more convincing when they are part of the process. They’re human beings too.  

HR:  Well, you know, a corollary to this is by you showing the insurance companies how they can make more money. If we just switch gears just a little bit temporarily to come back to that, to the employment field of those of us whose brains are a little bit different. Showing the big companies how you can improve your bottom line by hiring this individual with Asperger’s who will sit at a computer for 10 hours and outperform everybody else with the numbers as an example.  

MP:  Yeah. And our work will eventually touch on those employers too, because they want a productive workforce. Whether it’s someone with IDD or a family member of someone with IDD, the more you can de stress their lives, the more productive your workforce is going to be. And we really believe, hacky that the tools that we’re coming up with, you know, coming, you know, as someone really steeped in employment issues, you know, the concept of universal design. Right. All we’re trying to do is apply the healthcare equivalent of curb cutouts.  

HR:  Explain to the audience that the what you just said about explained to them for those who might not understand the theory of universal design, how you extrapolate to what we’re talking about right now.  

MP:  Yeah. So think about curb cutouts, which were not consistently available in communities before the ADA. They were designed for people in wheelchairs. But it turns out after they became available, that they’re also great for parents with strollers, and travelers with luggage. Who knew? Well, you should have known because when you design the world, for people with the most significant needs, you usually end up with solutions that are make life easier for everybody. Right? So in health care. For example, I’ll give you two examples. One is, it turns out that when you write healthcare information, at the sixth grade reading level, the people whose understanding you improve the most are not sixth grade level readers. They are 12th grade level readers from you mistakenly assumed wanted their health information at the college reading level. They don’t. They want it at the sixth grade level. So lo and behold, you’re trying to serve a population with deeper needs, but you made life better for everyone.   That digital snapshot that I mentioned, one reason I’m so excited about starting to stand up that pilot later this year, is I can’t wait for that tool for my 84 year old Vietnamese speaking mother who does not have IDD. But God bless her when she is stressed and when she is in the ED, which has happened more than once. And I can’t get there for 35 minutes who suburban traffic. I really want her to have this tool. And so that’s, that’s the concept of universal design is kind of aiming for the most common denominator, right? What would all human beings benefit from? And if you designed it that way, instead of designing for that fictional person in the middle of the bell curve, we would have a much more person centered, user friendly and less stressful healthcare system.  

HR:  Absolutely. You make all the sense in the world. Now how can people learn more about the Institute for exceptional care and about you?  

MP:  So, our website is www.ie-care.org. And I really encourage you to sign up for our newsletter. We get so much progress in our projects that our website is often behind. There are many opportunities in our projects for community members to participate. One of them is something we will launch hopefully later this year, early next year called the IDD Advocate Forum and that is an idea of bringing together people like me, people who are healthcare professionals, but who also have a real personal commitment to IDD. Other people are not running IDD nonprofits, right? Other people like me are working in hospitals or insurance companies or in Medicaid agencies. But they want to help. And so what we’re doing in the advocate Corps is we’re bringing them together with community members. And they are going to become an army of insurgents, of change agents, within healthcare within their own health care organizations, but they’ll be doing it with the wisdom of people’s lived experiences. And so that’s a really, I think, different way to partner and advocacy. And we will just want as many people a part of that core as possible.  

HR:  You know, our friends, from the AADMD, Rick Rader and Steve Perlman, who think the world of you and everything you’re doing, we’re kind of pioneers in this before it was cool. Have you seen the world of IDD change in your involvement along the way?  

MP:  Um, well, IEC is so young, I am skittish about saying that we have, you know, had nearly the level of impact that Steve or Rick had. And we were really standing on the shoulders of giants here. But I would say it does feel like there’s a certain moment in time here. Not only that, there’s just a lot more attention to social justice right now, not only that COVID was a disaster for our community and it just raised a lot of questions. Not only is there like a National Mental Health Crisis on top of that, but also inside health care there’s just a lot of attention right now to diversity and equity and inclusion. And we are finding a moment to be able to make the case disability is a key element of that. And disability where it intersects with race and ethnicity and poverty and living in rural areas and all those things. And so, being able to stand on the shoulders of giants, there is this opportunity, I think, to have a different conversation with healthcare than maybe we’ve had in the past. So it’s, you know, it’s our job to not waste that moment. That’s why sometimes you hear my speech being pressured. Let’s hurry, let’s hurry.  

HR:  And as also you brought up I’m glad to say that this year, for the past few years, the first year medical students at Boston University, I have the honor of giving them a talk on neurodiversity, which is now being introduced into the lexicon because, and I tell them when I was in medical school, we didn’t get any training in this not even a mention of it. And then all of a sudden you’re in you’re, in my case, my orthopedic office and you have an autistic patient, and you have no training for it. You don’t even know what it is. And you know, when I wrote the book, Aspertools, one of the reasons was because when my daughter was diagnosed with what if I didn’t know what it was, you know, if I don’t know what it is, a lot of people don’t. And then as I learned that wasn’t just about this. It’s also this label and that label and dyslexia and PTSD and psychological and psychiatric — wait a minute, it’s all different brains, and that’s why we tried to put it under one roof. Now when we get a, I’m gonna call you in addition to everything else you are A culture warrior, who changed the culture in your way, and very importantly, with the people who signed the checks, and to help make the economic and the health care policy, which are intertwined heavily. Whether we like it or not, it is. And you want to make it Win, win win all the way around with the insurance companies, when the patient wins, the hospital wins, the doctor wins, everybody should be a winner. And that may sound whimsical, but that’s kind of what you’re doing.  

MP:  Yeah, and it’s not that there won’t ever be contentious moments there already are, it’s more that you know, because you’re a veteran of movement building, right? You always want to start with the coalition of the willing, and you want to come into this work, not blaming people, but blaming the system. And helping people evolve that you mentioned, these new medical students. And I, I should also say, one of the things that gives me hope is that, you know, this younger generation of clinicians, they are just different. They grew up in a much more diverse and open society than we did. And, and the, you know, the new numbers from CDC have to make a difference, the new shows and movies about people with disabilities, and, you know, just showing people being people and being complex about it. I think all of that makes a great deal of difference. And I think that is so such fertile ground. So, you know, tackling the clinicians near the end of their careers, maybe a little bit harder, but that young generation gives me a lot of hope.  

HR:  Mai, is there anything you would like to cover that we haven’t covered today?  

MP:  You know, I guess I would just say, we are learning. And I would say to all the community members out there, if you walk with us in our projects, Your opportunity is to teach us and help us get to go faster. And I guess I’ll just close with a little bit of schmaltz, which is that I’m, you know, when I think of the way that IEC brings together community and health care, and really creates that space, for working together. It’s not just niceties. We all we make decisions together, we argue, and then we do stuff. And that, to me feels a lot like laying a table for people to break bread together. That is the start of culture change. Because once you’ve broken bread with someone, it’s really hard to not care about them. It’s really hard to view them as other or something less than human. And so come help us set tables and break bread with us.  

HR:  Mai, I know you’re not an island, and you can’t do any of this alone. You’ve had some partners along the way and presently, in what your mission is. You want to talk about that a little bit?  

MP:  Sure. This has been such a growth journey for us. We have had the privilege and blessing of an unbelievable number of mentors, and partners. So in fact, when I see was being conceived, you know, maybe in our third trimester, we were originally going to focus on autism, because that was the world that our families came from. But it was RNA mon and and the Autistic Self Advocacy Network that explained to us no, the opportunity here is really to think about the needs of the IDD community broadly, just the same way that you approach different brains. Hackie is there’s more there’s as much variation within a diagnosis as across diagnoses. And the types of solutions that we want would be good for everyone. And we didn’t want to leave anyone behind. So that’s how it started. And then it occurred to us well, we don’t know, we didn’t know nearly enough about disability. We don’t walk around with the institutional memory and the body scars that Steve Pearlman or Rick Rader, have, you know, and we wanted to borrow all of that wisdom.  

So we actually, in addition to our board, which has 25% self advocates, and our Advisory Council, which again is like 25 to 30% self advocates. We also have a special group that we call our values framework group. And that group has only community members and disability experts on In it, and their job is to keep us on us and hold us accountable for adhering to disability values and all of our work. So they help set guidelines for us around community engagement, we go to them with strategic questions about specific projects to make sure that we understand the historical nuances. And, you know, and who the players are, they keep us safe is how I think of it. So we have, you know, over two dozen disability groups on the BFG. And, and I don’t know, we wouldn’t be able to travel without them. So a very unusual setup. And, you know, they probably saved us, I would say, over a decade of learning. And that Steven, and Rick and people of their caliber are willing to bring us into ruins like with you, and, and connect us, you know, has just allowed us to move so much faster than a new nonprofit would usually be able to do. So we we very much feel pressure to get it right and to get it done, if like make change as quickly as possible, because, you know, they’ve invested so much in us that we owe that to them.  

HR:  My what is one piece of advice you would have for either an individual with IDD or their loved ones that are discouraged by the challenges, they are facing getting care?  

MP:  I really want community members to approach this from a position of strength to believe in the genius of your own lived experience, and to view the clinicians on the other side of those conversations as potential partners, where you may be in the role of teacher and coach. And that if you can walk into those relationships with tips on how to work with me, or here’s what I’ve heard other clinicians do that make your life easier and my life better. You know, it won’t work every time. And not every clinician is going to be open to it. But I think that that type of approach has several benefits. One, they will learn something, if they’re open to it, and two, you will feel agency and that at the end of the day is the most important thing to us. IEC is not here to have health care, do things to you. IEC is here to make health care receptive to working with you to optimize your health and your life. So there, you know if you need help, putting together those tips on how to work with me, contact us we don’t generally do direct services, but we can help point you to some resources. And certainly when this digital snapshot is ready to go out in the world, we would love for that to you know, be adopted by whomever thinks that would be useful.  

HR:  Very well said. Well, Mai Pham you have really touched a lot of bases. And as an internist and a national health leader, and in your role for the Institute for Exceptional Care: keep up the good work and keep in touch with us, please.  

MP:  Thank you Hackie I can’t wait to see the ripple effects from this. So appreciate the conversation.