>> [MUSIC] I want to welcome my dear medical school friend and powerhouse Mai Pham, who is the president of the Institute for Exceptional Care. Mai Pham is the founder and CEO of the Institute for Exceptional Care. She is a general internist who has served as the Chief Innovation Officer at the Center for Medicare and Medicaid Innovation. She has led value-based care initiatives at Anthem, which is the country's largest healthcare insurer. She's a mom to an amazing young autistic man and she is a powerhouse and I'm very much looking forward to hearing her comments today. Thank you. >> Thank you for that kind introduction, Clarissa. I'm so thrilled to be here today. IEC is a young organization and we are trying to build community and we're really excited to get to know more California partners and to understand your community context better. For me, this is a terrific opportunity. I wanted to begin by explaining who I am. It's important to know about me that yes, I am an internist, I'm a primary care safety net doc by DNA. I did all of my training in urban areas on the East Coast where there was a lot of need. I usually had my clinic not on campus but in community sites because I wanted to see, and be where my patients lived. That's an important part of me. This is healthcare for the homeless in Baltimore where I spent some number of years. It's also important to know about me that I am a first-generation immigrant. My family left Vietnam when I was not quite seven years old in 1975. Then I've had an opportunity to go back to Vietnam and work there as well. These are foundational experiences in my life that make me the kind of person motivated to constantly be looking for putting out radar and feelers for people who live at the margins of what we consider our society, what we consider normal. It also makes me really sensitive to the value and the wisdom that you find if you bother to stop and listen to others who are different from you, immigrant children learn, and they have to learn how to bridge between cultures, between languages. That's just a really important survivor skill and that has proven to be a real blessing in this phase of my life and work. As Clarissa said, I also spent time after my clinical work doing health policy work and practicing that on the ground. I wasn't really an academic. I actually created programs and ran programs, giant experiments in different ways of delivering care, different ways of paying for care, for Medicare, for Medicaid, for private insurers. Along the way that also shaped me, it shaped me in thinking about and appreciating all of the different pieces that need to fit together if we want big changes to happen in healthcare and who the important actors are, and the fact that those important actors are not always people with big titles. They are often just the people that their peers most respect. They are people who have vision and passion and commitment to whatever change it is they want to make. I also learned through these years of healthcare transformation work that to drive transformation, you have to have a combination of vision, and you have to be able to tell that story of what your vision is, and then you have to have a plan and you have to build a lot of allies. I give that just as background so that you have some context to understand how and why IEC got to where it is and what we do. As Clarissa said, I am mom to an amazing 20-year-old young man. This picture's a few years old. That's Alexander, on his older brother Benjamin shoulders. Alexander, we recognized as a math prodigy when he was about four. He's also wildly creative and hysterically funny. That's some of his cartoon doodles there. This is him in California actually explaining Stokes' theorem to a room full of pediatric psychologists when he was there enrolled in an MRI brain study. This is him. In the other part of his life, he's a real lover of nature and extremely observant naturalist. This is him hiking in the rainforest in Vietnam with us. He generates his own self-similar fractals, and he's an organist, and this hat sits proudly on our piano at home now. But of course, as you all know, the beauty and the wisdom of the lives of individuals with IDD run into the brick hard realities of what they face when they and their families need help from the healthcare system or other services sectors. You've heard talk of the stigma, well, that comes from a place. It comes from a place not of ill will necessarily, but the reality that the vast majority of clinicians get zero to no training to very little training in IDD. Medical students get an average of 11 minutes. When clinicians don't feel confident with respect to a given area, they tend to clam up, they tend to tighten up, they tend to lash out, they tend to back away. Those are all very human reactions. We shouldn't be surprised that it's challenging for those clinicians to deliver culturally appropriate, inclusive, safe care that allows people with IDD to maintain their dignity. As a consequence of that and other challenges, people with IDD experience higher rates of health risks, obesity, diabetes, overall poor health. We heard about the statistics around COVID and where the intersection of IDD meets other marginalized communities, like Black and Brown communities, poor communities, rural communities, those in the queer community, they all have even worse outcomes. There's a terrible multiplying effect that happens when IDD meets mental health issues. Higher rates of depression and other mental illnesses, compounded stigma between for someone having IDD and a mental health issue. Extraordinary suicide rates, especially for autistic adults and you can imagine for me as a mother, how that makes me anxious and tense about my son's future. There is often a focus on treatment for behaviors rather than the underlying causes that may be generating the behaviors. We refer to that as diagnostic overshadowing. We also run far too often circumstances where clinicians misinterpret behaviors and communication challenges as mental illness. That's why you end up with a statistic that 30% fully of both adults and children who have IDD receive a prescription for antipsychotics. What is IEC? As I said, we're a non-profit. We were founded by health care leaders, many of whom who also have the lived experience of either having IDD themselves or having cared for a loved one with IDD. Between us and I could only fit so many pictures on a page, but there are many more founders than this. We have decades, if not centuries of work in clinical care, in insurance, in hospital administration, in research, in policy-making. As you saw, many of us also have had responsibility for making good trouble at a large scale in health care. Our particular expertise is, how do you move the money flows in health care to get the results that are best for the people we're trying to serve. But we are not alone. We do this in partnership with the IDD community. They sit on our board, they sit on our advisory council. Importantly, we have also created what we call our values framework group that is dedicated only to disability advocates and self-advocates. Where the focus of conversation and advice is for them to help keep IEC honest and accountable to adhere into disability values like promoting self-determination and community integration. Then I think as importantly, they are in all of our projects and they are not just participants, they are often also co-leaders, coauthors. They often steer us in different directions than we expect it to be steered. Every time that happens, we consider that a win. Hopefully you can see in these two slides, this DNA that I have as a Bridger, that the magic of what IEC hopes to accomplish and how we hope to do it is that we are both inside health care and inside the community and we can help translate across that chasm of culture, of language, of mistrust to be honest and build a safe space where these different communities can actually work on solving problems together. Our goal is to make health care safe and inclusive where people with IDD are treated with dignity so that they can lead their best lives. We have three areas of focus, training more capable and caring clinicians and by that, we don't mean IDD specialists. God bless them, we would love more of them but when you peg this population between 3-5% of the total US population, you can't rely on specialist alone. You need all clinicians to be prepared. IDD, we believe creates a clinical context the same way that diabetes might. A patient with diabetes makes you think differently about how you approach surgery, how you think about cancer, how you might think about someone aging and needing supports? The same thing with IDD. You just have to figure it out regardless of whether you're an anesthesiologist or an oncologist or a surgeon. We also worked really hard to take that burden of coordination of services off of patients and families. You shouldn't need a PhD in social work to get through your life and get what you or your family member needs. The way to do that we believe, is to put that burden on professionals and on technology, but in a way that still allows the person with IDD and their families to direct. Then of course, paying for all of this and financing it in a way that makes it sustainable. How we do our work is that we begin by listening to people with IDD and elevating their perspectives. Not only that, not only elevating their perspectives, but role-modeling for our health care colleagues. How one leverages what we would call the genius of lived experience. It's not just about being nice or doing the right thing or being respectful, it's also that if you Healthcare Leader want to solve a health care problem, your best approach, your shortest path from here to the answer is to first listen to the person you're trying to help. We try to address the complexity and the loneliest that families face, we do a lot of connecting, we do a lot of explanation, we do a lot of thinking through how do we make anything that we touch a little bit easier for everyone. We talked about preparing all clinicians. Ultimately what all of the shapes up to is IEC's goal is to create the future best health care experience for people with IDD. What does that look like in terms of the models of services that we provide or the world provides? What does that look like in terms of insurance benefits? What does that look like in terms of the network of clinicians and facilities and other service providers who need to be involved? What does that look like in how we finance that, how we bring money into the system and how we pay for it, how do we reimburse the service providers? I want to talk you through just a little bit with a bit more granularity about what our work actually looks like. When we talk about improving access to health care for people with IDD. IEC, that access begins with sharing power. Access to power is the first step toward true access. Supporting the rights and dignity of people with IDD, learning about their multiple identities. I am not just a Vietnamese immigrant, I am also a woman, I am also a physician, I am also the daughter of an 84 year old ailing mother. People have multiple identities and we need to see them in their entirety in order to meet their needs, we have to pay for their time. Changing the system should not be volunteer work for anyone and we should pay for the time of community members at the same rate that we pay for other people's times. Recognize the genius of lived experience, build more effective and equitable solutions, which I think just follows from everything that came before that. Then fostering trust and collaboration. This is a long-term project, this work is a multi-decade piece of work, it won't last that long if we can't build and sustain trust, and you do that one relationship at a time. What does it look like to elevate the perspectives of people with IDD? In one of our projects, the goal of which is to create a health outcomes framework for IDD. What are the health outcomes that matter most to the community and that clinicians and insurers and government can support. That was the goal of the project. To figure that out and derive consensus around it, we started by having one-on-one conversations with IDD self-advocates and we brought along a graphic illustrator and walk them through questions about what does being healthy mean to you? What does being unhealthy mean to you? What kinds of supports would you like to be healthy? Who helps you? What would you not want to have happen? You see here the illustration that BJ, one of our self-advocate leaders contributed to. This is his health journey. We give these illustrations back to self-advocate that for many of them became their mascot. The way that they announced themselves to the world is I want you to understand my journey and to concretize their values on a page where other people can see it and where it's permanent. No one can take away BJ's perspectives no matter what the other stakeholders bring to the table. That's an example of what we mean by elevating perspectives. When we talk about taking that burden of navigating services off the families, what does that look like? Well, we looked at current models out there of how insurers or Medicaid programs, or clinics may try to help patients navigate services, and we didn't find any of it to be satisfying, especially when we interviewed more than 30 stakeholders and experts about what they thought would be ideal. This system model that we came up with, we call it the by my side model, and this is the concept of having a trusted, independent professional take that responsibility. Ideally, this person would be trained in healthcare to know what those services look like and how that system works, also in home and community-based services and maybe other domains like educational services. But really, what they need to become is expert in that person with IDD and their needs, and their preferences. The hope is that in that way, this independent professional who is not employed by the health plan or Medicaid or the hospital system can stay with that person and family across life stages. Hope you had to switch insurance, that's okay. I'm still at your side. You became an adult overnight, and you've lost access to these other supports in school, it's okay. I'm here by your side, and that this person can then work to connect them to the right services and can advocate on their behalf. We also really believe that there should be no wrong door for people to find what they mean. If you have a by my side support person, that's great. But if you walk into a clinic, that clinic should be able to connect you to other services that you need. That really requires that behind the scenes, the clinics, the hospitals, the community-based organizations, the housing supports, all of those entities need to create bridges between themselves and develop real working relationships so that they can offer those connections more seamlessly. How do you drive culture change among general clinicians? That just sounds massive, and in some ways it is. We try to break it down. What you see here is a journey map that we put down on paper as part of our action to build clinical confidence and culture, or ABC3 initiatives. The goal of this initiative is to bring together national organizations like professional societies, bodies that accredit clinical education programs or other training programs or offer licenses to health professionals, educational groups, as well as groups that provide peer-to-peer technical assistance, clinician to clinician. All to ask, "What can we collectively do to drive culture change among general clinicians at scale so that they are better prepared to serve people with IDD?" We envisioned this journey where that takes a clinician from down here in the lower left corner, where they're feeling wary and not confident and helpless, and maybe put off at the thought of serving people with IDD. How do we get them from there to this middle state where they're empathetic, they are committed to serving the population, and they're increasingly confident that they know how to do that? Then to a final state where they have all that confidence and empathy, and commitment, but now they can actually take action and improve outcomes for people. The different elements that you see here off of this journey map are what we hypothesize are the driving factors, and you can ignore the highlighting and such. But, for example, it's important for clinicians to face professional standards and requirements that can be very motivating. It can be very motivating to have access to cultural competence training. It's even more empowering to have patients and families who are activated and can work with you, and know how to work with you. It's incredibly important to have professional role models. Not only to role model the right way to do things, but importantly, to not role model the wrong way to do things. Then it's important to have the tools that you need. You can have all the commitment and well-intentions in the world, but for example, if your clinic refuses to buy accessible exam tables, you're not going to be able to take action as easily. One thing that we also are very sensitive to, and this again, is a reflection of our bridging DNA, is that we have to have empathy for the clinicians and the healthcare actors who were trying to influence. They have a lot on their shoulders. As I know, Clarissa can attest to from 6:00 a.m. in the morning until 9:00 p.m. at night. You simply cannot ask an ED doc to sit for one more hour of in-service training. At Northwest Hospital on Long Island in New York, they already have 70 hours of required training a year. What do you do? How do you engage them? We think of an alternative approach that we would call ambient learning, and it starts with having empathy for that clinician. We understand you have many challenges and many responsibilities. How can we help you? It sounds like it's very painful for you when a patient with IDD arrives in the emergency department and you don't know anything important about them, you don't know how to communicate with them, you don't know how to keep them from becoming anxious, or have to calm them down. Let us help you. Here are some tools for helping you with that. For example, we're developing what we call a digital snapshot that will be like an app on your phone or that you can access on a computer that has the most critical information about that person, and including tips on how to work with me. Here's what I look like at baseline. I'm a really happy athletic person, click this video. Here are anxiety triggers. Here's how you can call me down. I love listening to music. Click here for my favorite tunes. In this way, build not only a relationship between that clinical team and the person with IDD, but also helps that team to see this person as the whole person that they are first before thinking of them as a patient. That's ambient learning. We also think about the big picture. I had shown you gears of how different pieces of the system fit together with the payment and the workforce and that service coordination. Well, those gears don't move together automatically. You have to line them up and each of those gears requires some really key ingredients. For financing and payment and for improving the clinician workforce, you have to know what it is you're shooting for. What are those health outcomes that you're trying to not just work toward, but that you can use to hold clinicians accountable. That you can use to measure the quality of care, to measure health inequity for different groups of people with IDD, whether they're black, brown or whatever. We set out to create this health outcomes framework. As I said, we began with people with IDD, and then we turned to family members and we said, you can't take away anything that the self-advocates said were important. But would you like to add anything? Then we take that summary to the clinicians and we say, you can't take anything away from what self-advocates and family members said. But which of these can you support? What resources do you need to support these outcomes? Then we turn to the payers, insurers, and government folks and we say, you definitely can't take anything away from what the first three groups said. But how can you incorporate these priorities into your programs? How can you support clinicians in doing this work? How can you support people with IDD and their family members? The goal is to have this health outcomes framework as solid enough as a draft that we can release it for public comment near the end of this year and then use it in future work to develop measurement methods. Another key area of work for us is addressing this really significant problem, this foundational problem that if you can't see someone, you can't meet their needs. The reality is that in health care data, people with IDD are very invisible. If you can say very about a word like invisible. We think that when you look in clinical charts and when you look in insurance claims, you're seeing a fraction of the actual population, like 10-25%, because it's not very well recognized. It's very poorly documented and if it's a condition that medical students receive 11 minutes of exposure to, it's not going to be top of mind for them. If you don't appear in data, there's a lot that can happen for you. We can't measure your quality of care for that population. We can't really discern when you're getting the care you need or not. We can't follow the money trail and convince an insurer or a hospital executive that it is worth investing more in services for this population, when you can't see the population because to them it looks like a tiny NCTNC population instead of the 3-5% that it is. There are many sources of why this is happening. I list them here. But the takeaway is they are invisible. We think it's really important to unlock that data to make IDD visible in health care data. We think this would give clinicians and other providers real-time line-of-sight into who their patients are, how prevalent IDD is, and help them target interventions that will improve lives. It would allow payers to better address prevention, to better help clinicians and self-advocates avoid having to go to the EDs and hospitals. No one actually wants to do that if they don't have to and to build those business cases I mentioned. For government, well, what are you governing? You need information, you need much better data to make policy that makes sense. This project we call making IDD visible, is an attempt to create an automated data tool that can more comprehensively identify children and adults at risk of having undocumented IDD. That then allows clinical teams or other other actors to approach those individuals and confirm whether or not they have IDD. But at least you're not asking the question of 99 percent of your population. You've narrowed it down to a group that may have high risk. We think that it's important to do this through a combination of healthcare data and non-health care data, and leveraging the expertise, of course at the self-advocate community and family members and clinical experts. Then just to heart you with I wanted to share this video. [MUSIC] >> My disability does not define me, it enhances my humanness. >> Nobody can speak better for us than we can and nobody can understand us better than we can. >> Somebody with a disability doesn't mean they don't know what's going on. They have a voice in their own way. To be heard and be treated like everybody else. >> I don't think disability is talked about enough in the media and public discourse, or in politics. >> He says, I want to say I am autistic, but I'm smart and can achieve many things if they let me. >> They just walk right past us and just speak right over us like we're nothing to them. >> ER's are very intense, scary places for everyone. Monitors have beeping. Lots of people running around. A nurse says, I'm going to take your blood pressure and takes your arm. Patient with IDD thinks, what's a blood pressure? What is she doing to my arm? Why does it hurt? Will it go on forever? >> Treat me as, you would talk to your other patients if not. We might have have a problem. [MUSIC] >> Sadly, medical professionals, like much of society, see people with disabilities as other, a bit less than human. This isn't a value you can teach in a class. But like most prejudices, it can be addressed by finding ways to have doctors in training spend time with people with disabilities and their families. >> As for me, I feel very blessed to have Huan in my life because it's like there's underlying bond between the two of us. >> More listening, better communication, better understanding of what it's like to live with a disability. Because unless you roll a mile in my wheels, you have no understanding what it's like. >> Patience and open mind for them to try out of the box interventions. >> Wow, you guys have come up with a really great project and are really going to educate people. Really going to teach people how to serve medically, people with disabilities because it is not easy. You let us have a voice. Not our parents, not anybody else, us as the person. Seriously, wow. [MUSIC] >> Whenever I need a high in my day, I play that one. With that, thank you, Clarissa. Thank you all for joining, and I'm happy to answer any questions or have you direct the conversation however you think most helpful. >> Dr. Pham, thank you so very much. That was an incredible talk, and really sets the stage for what we need to do. There are some good questions in the Q&A, and I'd like to give you an opportunity to respond. How do DD physicians or other providers get involved in a community to help these patients? Is there a professional or other organization? >> Yes. I think we don't know about them all yet, but we have become quite close to autistic doctors international, for example, and the Developmental Disabilities Nurses Association has nurses with IDD, and other disabilities. There are other societies like Doctors with disabilities that are more general. But what we have learned is that they make wonderful leaders. We have also learned that they feel very isolated. We want them to have this dual experience of knowing both, that they have a community of us, health care peers who don't have disabilities, but also that we want to elevate them as leaders in the change making. >> This is John Takayama, and I'm going to read part of the next question from Dr. Spinozi. She writes, you describe an excellent framework for addressing this. I think this is the part where you're doing the advocacy, which is what responses are you getting from health systems and health plans? Are you getting funding? Are you getting ideas on how to make things better, financial support, others forms of support? >> It's a great question. They are very much involved. We have not actually explicitly asked them for funding yet, but it's trending that way. For example, in our Long Island project that's focused on the emergency department, the health plans are at the table just as the hospital systems are, the FQHC clinics, the disability service organizations, and our community members. Just this morning, I had to jump to this call, and regretfully leave another call where all those stakeholders were talking through. Well, I can donate how many people to Beta testing this tool, and I can donate this how many people, and we as a health plan can give data for the evaluation, and so they are very much in the work. I think that the health plans are also eager for us to see what this health outcomes framework comes out looking like. They are obviously participants in that work, and they're eager for it to move to the next stage where we can develop metrics and that can then help them figure out how best to serve their people. They're in learning mode also, I would say. I think that many of them; even those who specialize in insurance support for people with IDD feel like they're still learning. They definitely appreciate the new insights, and the way that we're bringing community to the table. Because let's face it, it's not that easy for an insurance company to reach out, and build a trusting relationship [LAUGHTER] with their enrollees. We are happy to provide that space, and coach people so that they develop the muscle memory of, oh, this is how you use plain language, and this is how you slow down in a meeting, and this is what means to really listen to someone, and oh, these are the ideas for how I can convert that into my programs. It's just been a real joy. I have to tell you that when I was in the insurance business, whether that was for government or the private sector, it can be a soul draining place, even with a lot of well-intentioned people in the mix; really, you're talking about money all the time. You're talking about somebody's money all the time. Somebody who wants more money, somebody trying to take money away from somebody, and it's just very soul draining. For some reason in this space, when I engage the exact same health care actors, they are different people. They just seem to want to do the right thing. I can't explain it completely, it's not that they want to lose money doing this; don't get me wrong, they're still being rational business people. But all of that pollution gets melted away, and for some reason maybe we've just been lucky, but they really want to get to the right answer. We even had one health plan executive say during a health outcomes focus groups, can I just pay for the clinics? Can I just put a social worker in the practice for them? Would they let me do that? I was like, I don't think anyone would turn you down. But they're so eager for solutions, they feel stymied to. >> Go ahead, Clarissa. >> I think that sometimes people can hear from a messenger who speaks their language and that is one of the powers of your leadership, Doctor Pham, is that you've been in that space, and you understand how to talk to those leaders, so you're getting a different response than other people. So I want to commend you for that, and thank you for that as well as for highlighting the voices of people with disabilities, and people who use augmentative, and alternative communication in your messaging because that's so important. We have other questions for you. Some of our people with intellectual, and developmental disabilities don't have fluent, expressive communication. What can this initiative or medical offices do to provide people with communication modalities such as speech-generating devices, picture icons, low tech augmentative, and alternative communication systems? What's the role of health care in supporting communication? >> I think you've just named some really important ones. I think some of it is very low tech. Some of it can be, let them bring a support person into the encounter, elicit from them what they would prefer; don't make assumptions. Definitely use plain language, and graphic illustrations wherever possible, which by the way, is better for all patients. Because it's a fallacy that college grads want their health care information at the 12th grade reading level, we actually all do better in comprehension when the language is much simpler. Those are some opportunities. I think if you're asking can a clinic get an insurance company to pay for an assistive communication device? That may vary a lot more, and the answer is more likely to be no. However, there are clinics, and health systems that have the flexibility to use funds however they think fit. For example, if you are under a capitation contract, you get those dollars, and you decide how best to spend those dollars on behalf of your patients. Medicaid has what they call in lieu of services that allows states to cover things that aren't directly medical services, but that can improve health. These mechanisms are not all tied together neatly yet in a way that's easy to navigate, but there are bits, dribs, and drabs floating out there for sure. I know that at IESE we spent an enormous amount of time, and resources trying to get this right. Clarissa, to tie both your points together, I don't have a ton of patients when a health plan or a hospital system says that sounds like a lot of work to have a graphic illustrator, and live transcriptions. We are a non-profit of five people. If we can do it, you, academic medical center can do it, you, large national insurance, you can do it. One of my roles, being able to speak their language is that I can call them out when I think they're talking bullshit. >> Dr. Pham, thank you for that. There's another question. I think this is more from the front line from a provider who is talking about lack of time. I know that's an issue that comes up often in terms of caring for patients. >> Yeah. I feel that more deeply than you know. As Clarissa knows, for most of my career, I have been a frontline warrior trying to rejuvenate, and fix primary care. A lot of that is about focusing on how we need to better invest in primary care, not just with more flexible payment systems than these stupid RVUs that people have to bill for, because a person is actually not a unit of service, [LAUGHTER] a person has some complex needs. The value of primary care, the intellectual value that primary care brings to a person's problems is that primary care clinicians can integrate their needs, and can integrate the solutions. You need time to do that, you need flexibility to do that. One reason that I stay involved in broader health policy work, especially in payment reform, is that I don't know how to solve problems for this population or for any marginalized population with complex social, and clinical needs without fixing primary care payment, and getting us to a system where we literally at least multiply times 1.5 or double the amount that we're paying primary care, and take it off of the fee-for-service wheel, and give it more flexibility through some population-based payment because time is a real issue. [MUSIC]
