Sherri Sager joined Lucille Packard’s, Children’s Hospital at Stanford in 1994, and she continues to serve as the Chief Government and Community Relations Officer. She has more than 30 years of experience in government having worked as staff for elected officials on all levels of government. She’s, managed political campaigns, Wait and talk with her at the intermission, as well as having served as a volunteer on city and county task forces and commissions And Sherri’s. Title is Children,’s, Hospitals and the Importance of Health Insurance and Medicaid for Children with Disabilities and Special Care Needs Welcome to the podium applause. Thank you. I was just whispering to Lucy that the most difficult task for me today will be to stay on point with my slide, because I wan na work off of what Amy was just saying, and I kept thinking of all these things. I wanted to say, But I should let you know ahead of time. I tend to do that Because I think those are important things, And so I’m really grateful for the privilege of speaking here today and I thank Lucy so much for thinking of us and me and my colleague Lisa Chamberlain, who will follow. But I wan na start before I start my formal slides with a couple of sort of preliminary comments Way back when, when I worked for a member of the state legislature, one of the most organized and informed groups were the Developmental Disabilities Group, and I was a District Director for a state legislator – and they’d come in and they’d say teach us all about advocacy. How do we get some changes because at that time not unlike now, state budget was in trouble and there were threats to funding programs. So I’ve always found the developmentally disabled community willing to step up to the plate. Tell their stories share it and say this is important to us. You need to talk to us. You know we vote And if I were writing this, I would put it in bold. I’d highlight it and I’d underline it. We vote it makes a difference. The other preliminary comment is it’s always very discouraging to me when I’m talking to somebody in Washington DC, especially and they’re an elected official or they work for an elected official, and they confuse the terms Medicare and Medicaid, And it happens Way more than it should, since it shouldn’t happen at all. The key is Medicare is funded by all of us who work through payroll taxes. Medicaid comes from the general fund And it is not only the safety net for folks who are low income, but it is the safety net for anyone who has high medical bills with the idea that you, don’t go broke because of high medical costs. So part of my job is stereotype. Breaking I won’t. Let people get away with saying: oh those poor people, they’re just on welfare and they don’t do anything to deserve it. That’s, baloney And part of what we have to do is put a face on who’s on Medicaid or in California, MediCal. The one other point I would make is that the formula Amy went through and talked to you about the formula and the FMAP. It’s an antiquated formula, But we can’t change it. It’s antiquated, because it’s based on both the state’s, poverty level and a per capita. Well, California has one of the highest poverty rates in the country, So you would think that our rate would be so much higher. Well, we have a little problem in that we’ve got the Bay area More specifically, we’ve got Silicon Valley, and San Francisco drives up the per capita income for the entire state. So while we have one of the highest poverty rates, we also have the highest per capita which keeps us at that 50. It’s problematic, but we’re never gon na get that changed, unfortunately, because there are more states than us and they have the votes. The other big difference between Medicare and Medicaid – and it comes in here – is that Medicare is a federal program. That says here are all the things you have to do. It may be implemented on a state by state basis or a region, but there are clear federal guidelines. It is a federal program. Medicaid has a federal umbrella who says you have to do these kinds of things, but beyond that you can do what you want and it’s really. Thank you as I lose my voice, Which is probably not a bad thing. There are 54 different Medicaid programs in the country, One Medicare program, 54 Medicaid programs. It makes a huge difference when you’re trying to advocate when you’re, trying to make changes when you’re trying to protect the program, But neither Lisa or I have anything to disclose. And so I wan na talk more deeply about who are the children that are covered by Medicare and CHIP CHIP stands for the Children,’s Health Insurance Program and when congress first passed CHIP, they said. Okay, we’ve taken care of kids. We don’t have to worry about that anymore. Let’s move on Mm, not quite true. Almost half of the children with special healthcare needs are covered by either Medicare and CHIP and in 2008, the last recession with a big R in California. We combined the CHIP program into the MediCal program, So even within our MediCal program in California, we have two different FMAPs Because the kids on CHIP, it’s a 65 35 match. So the federal government pays 65 of the cost. The state pays 35, But it’s all blended together to create our Medicaid program As each day is different, so the cost or share of children with special healthcare needs can vary from 23 to 67. You heard Amy say they might have all the eligibility requirements, but they cap how much the funding is so that limits. I talked to my colleagues at Texas, Children.’s all the time who are lamenting that the state’s already run out of money and there’s kids on waiting lists who are eligible, but the state has no money. 75 of Medicaid CHIP. Children with special healthcare needs live in families below 200 of the federal poverty level. The federal poverty level is roughly 16 000 for a family of three, So you’re talking about 32 000. I don’t know that you are surviving very well anywhere in the state of California, but definitely not in the bay area. This is Tyler Tyler’s, one of my advocates. I took Tyler back to Washington DC with me two years ago when he was four: He’s now six And when I called mom’cause, I actually have written permission and I called mom to say: is it okay? If I’m doing this conference, I wan na show the pictures from DC and with Tyler and show his care map, which you’ll, see in a little bit. She said here, let me give you his updated photo, So I think it’s. Okay for me to talk about Tyler Tyler was born with half a heart And his parents were told he had. They had two options: They could bring him home. He was 32 hours old at this point and they could bring him home and say goodbye or they could have him airlifted to Packard. Now this is a family that plans everything They dated for a long time and say: okay, we’ve saved up money. We can get married, They got married, Saved up money, said: okay, we could buy our house, They bought their house, Saved up money and said: okay, we could start our family started our family And they did something that most of us don’t even think about. They bought helicopter insurance life flight insurance in their health plan’Cause, you know, just never know, laughter And then mom went into labor prematurely. Tyler was born. That was their option. They said life flight him to Packard. He got to Packard before well. Mom was still in the hospital before dad got there. He was already into surgery before dad even got there Turns out, though their helicopter insurance was for the wrong helicopter company, And so it didn’t cover, But we take care of things like that. It’s one of the things that children’s, hospitals tend to do And we don’t want families to go broke either, And so we actually through our financial counseling, took care of it, And I have to tell you this family also has primary Health insurance through dad’s, job secondary health insurance through mom’s, job and Medicaid, to cover all of the ancillary services and wrap around services. They could not survive without that. Dad makes choices about where he works because of the health insurance. So he makes the commute from Scotts Valley to San Jose every day in order to make sure that Tyler gets the coverage that Tyler needs For me, that’s a red flag, something we need to do something about That.’s, not okay. They should be just able to focus on doing the right thing for their family and having dad working closer to home would sure help a lot. So what are the demographics? Who are the kids who are on Medicaid or CHIP and have special healthcare needs? Well, 7 of them have incomes that are 400 of the federal poverty level. This is throughout the US, so it’s not just California. 43 are less than 100 of the federal poverty level. As any of you who work with or are somebody with a developmental disability, you know that it’s hard to hold down a full time job, even when you want to whether you’re a caretaker caregiver, it’s just tough to do that, And We don’t make it any easier, So it’s really important that we continue to be able to provide Medicaid so that at least families know that they have health coverage. Their race, ethnicity, 40, are non Hispanic white 29 are Hispanic. 22 are non Hispanic African American. So if you start looking at how our population in the country breaks down, this is pretty similar. So again we’re gon na bust, a stereotype. It’s, not all people of color. It is everyone It can hit. Anyone’s family. Now we’re gon na start. Seeing this age change It used to be. You had a lot higher numbers of the zero to five higher percentages and then, as they got older, they got smaller the percentages. Well, one of the good things is that through medical research and technology we’re saving. Not only are we saving a lot of children and families, but we’re giving them a quality of life Because we often hear oh well, there’s an ethical issue. You know you’re saving these children, but now there’s this huge cost to society for taking care of them. Well, guess: what, when we save children’s lives when we give them a productive life, they give back and we get those back in all sorts of ways. So it’s a good thing to be doing, but it changes our age breakdown. The other myth is: oh all, this money -‘s, going to all these kids, Two thirds of Medicaid spending is for elderly, and then people with disabilities And a lot of the elderly who have disabilities and if they’re low income they qualify. You hear them referred to as medi medi’s. They have Medicare and Medicaid. So Medicaid covers their premiums and other services that are not covered by Medicare. It makes a difference. Children are 43, We usually add in pregnant women’cause they’re covered. If they’re low income by Medicaid as well And as a children,’s hospital that actually has a pretty robust, labor and delivery. We’re as interested in that number, So about 50 of the people on Medicaid are women and children, And most of those children are healthy children And there’s some children in the disabled bucket as well The expenditures. This is the one that’s key. Only 19 of expenditures go to children 40 of the Medicaid expenditures, go to folks who are disabled. So what does Medicaid mean for children, Medicaid and CHIP? It benefits the entire family, not just the child. It provides access to care, They’re cost effective programs. When children are healthy, they’re less likely to miss school, They’re healthier into adulthood, They can earn higher wages And then guess what They can pay more taxes and keep the cycles going. I’m doing a lot of work these days on adolescent mental health, And I have a lot of frustration because everybody wants to solve the folks who are mentally ill coming in to the emergency rooms – and I’m, like that’s important. But if we would put some money into kids and into prevention, we might be able to reduce those costs when they get to adulthood, because we will have solved the issue And let’s put more dollars into prevention into caring for children and teens, whether it’s, physical health and mental health – and please please, please, please let’s get rid of the silos. Let’s encourage integrated healthcare. It’s better for everyone. Medicaid enables low income children to receive that needed care without co payments and deductibles. I often hear people say and legislators or legislative staff saying well if people would buy into the system. You know a co pay. 50. It’s no big deal. I wanted to ask them if they would spend a week living either as someone with a disability or on a limited budget that would qualify for Medicaid and then tell me that 50 is no big deal. I want them to have to make that decision. I have 50, my kid’s healthy this week this month. Do I pay for a health premium that we don’t need? Do I make a rent payment, or do I buy food? For my kids, I could tell you which one comes out on bottom. It’s an inexpensive way to cover children And when parents are covered, which is what the Affordable Care Act allowed us to do. Children are more likely to receive the preventative healthcare Because parents and kids are doing this together And it increases access to prenatal care which reduces infant mortality and morbidity, and we saw it with the passage of the Affordable Care Act for three years from 2014 til. Last year we were seeing those numbers And then, as Lisa knows Dr Chamberlain knows my favorite sentence is Medicaid. Is the underpinning of the entire healthcare system for children, And I wan na repeat that Medicaid is the underpinning for the entire healthcare system for children. That means laughs. Thanks Lucy See she’s, always being a caregiver. I don’t care how much money you make how good your health insurance is. If your children’s hospital, whether it’s, part of a large system like the UCs or part of a independent non profit like Packard, if we haven’t been able to hire the right specialist one because they are few and far between or two Because we don’t have enough volume to guarantee that they have an expertise. Not only is that care not there for a child on Medicaid that care isn’t there for any child So to have a healthy children.’s health system. You need Medicaid Volume equals expertise. There is a reason why, and I hope that anybody here at UCSF, doesn’t take offense, but there is a reason why Packard is the number one pediatric transplant program in the country? It’s because it’s able to have the volume and it takes care of children on Medicaid from multiple states. What Medicaid means for children’s. Hospitals is that children’s hospitals by in large, see more Medicaid patients that the vast majority of other hospitals, Your first response – is gon na, say: oh, I don’t think so Sherri. What about those public hospitals? You’ve got public hospitals all through the state, They take care of low income, children and they take care of Medicaid. You’re right, they do And they take care of Medicare and they take care of uninsured. And when you look at the percentage of Medicaid, it’s actually higher in children,’s hospitals, Because we don’t take care of Medicare, So Packard is on the low end. We’re only 43 Medicaid Children -‘s. Hospital Los Angeles is hovering between 75 and 80, as is Children,’s Hospital Oakland or now, as it’s known, UCSF, Benioff, Oakland Valley, Children,’s Hospital the same thing, So Medicaid is really the foundation and when you cut Medicaid there, isn’t Anyplace to go And what this does, as I said, is it allows for that much needed, pediatric expertise. It’s also the foundation of financial sustainability for children,’s, hospitals. We depend on those supplemental programs. What again, if you’re, a public hospital is called DSH disproportionate share, but for private hospitals and children’s hospitals, it’s called supplemental payment or its DSH lookalike. It’s identical rules to qualify for DSH. It’s just not called DSH because of funding streams, which is all back of the room. Graduate medical education, the provider fee. Sometimes adult hospitals get really upset because children’s hospitals, get the biggest proportion of the provider fee in the state of California. Well, there are two reasons We have the most beds covered by Medicaid and we hay the highest provider taxes. So the formula is you get back based on how many MediCal patients you serve and what the utilization is. I can tell you for Packard that’s about 65 million a year, the provider fee We don’t qualify for DSH, We’re in the absolute worst place. You could possibly be. We missed qualifying by about 1 Missing by 1 costs – us 10 million, But it is what it is. So we are very dependent and appreciative of the provider fee. Some of my colleagues are at children’s, hospitals where they’re receiving hundreds of millions of dollars, and it literally is the only way they’re able to keep programs operating And people say well, but it’s a tax. So we should cut all taxes. This is a tax that we, I’m. Not sure gladly is the right term, but we gladly pay ourselves and have voted ourselves to self tax ourselves in order to be able to draw down these federal dollars, because these are dollars that the state of California was leaving on the table. California was eligible for these dollars based on the federal government’s formula, but there wasn’t enough money in the state general fund to be able to draw the dollars down So by taxing ourselves as hospitals. We give that money to the state to be able to bring those dollars down from the federal government, So don’t. Let anyone tell you that California is getting more than its fair share. It’s not and California. Even with this is still a donor state to the federal government – And I wanted to tie it in because I can’t do a presentation like this without at least touching on the Affordable Care Act, and then I will try to wrap it up. So I leave enough time for Dr Chamberlain because the Affordable Care Act, especially for kids and especially for folks with disabilities, is a life saver. It means no annual caps, no lifetime caps and you couldn’t be discriminated on with buying health insurance because of that disability That was important. It’s important to our patients, and we will continue to strongly advocate for that. The future of Medicaid the challenges Amy touched on some There will be attempts to continue to repeal all of the Affordable Care Act, especially the Medicaid expansions to cut eligibility requirements to cut benefits. Make no mistake if you do block grants or per capita it’s. Cutting funding because then they put it in a block grant they don’t see anybody’s face, and then they cut And most serious again is a non realistic understanding of what Medicaid is and does by a significant number of elected and appointed officials. So I talked about Tyler. This is Tyler’s care map and mom said she has to get me an updated one because they’ve got more appointments than this. Now, For him to go back to DC with me, he had to get approval from 18 different pediatric specialists And he had to bring his oxygen and we had to have backup batteries for his oxygen on the airplane. And this is Tyler talking to Congresswoman Anna Eshoo and showing her that, above all else, he is a kid and he is a child just like any other child. Thank you, applause. That was great. After all these years. I understand Medicaid and Medicare, and all of that thank you Or at least understand it better. Why do they wan na do away with it uh, So our next speaker also from Stanford, but previously with UCSF, where she was in fellowship in a joint UCSF Stanford program? And I had the opportunity to work with Lisa Chamberlain on a number of advocacy projects, including things that we did with the Academy of Pediatrics in establishing the California Advocacy Committee that involves all of the residency programs throughout our state. But that’s not what she’s gon na, be talking about today. So let’s get back to basics and Lisa will continue to enlighten us on the importance of health, insurance and Medicaid for children with disabilities, and special healthcare needs. Welcome to the podium, Dr Chamberlain applause Good morning. Thank you very much for the invitation And I need to say that this is kind of coming full circle for me, because I would not be able to do the work that I’m about to share with you that I do without the two women in This room Lucy, Crane and Sherri Sager As a resident I was so overwhelmed with. I saw taking care of these kids and frustrated that I couldn’t get kids that I cared for eyeglasses. It was actually a 17 year old girl who I’d taken care of for a long time, a real bright, bilingual bi cultural, immigrant girl, who came to my clinic with headaches and headaches that were worse at the end of the day. This is a kid who had straight As She was awesome And headaches at the ends of the day, probably squinting That’s. The first thing you do check her vision, Sure enough. She needs glasses, And this was the day before the Healthy Kids Program, and I could not get her glasses That’s, what she needed. A pair of eyeglasses, I spent months trying to figure out Because all she had was EPSDT, which meant she could be seen on intervals to be cared for. But she was out of interval And I called the Lion’s Club and they had a waiting list and I spent my own time calling different providers. I finally found someone in Burlingame And I remember the day I called her. I was so excited. I found an optometrist that’s gon na, get you glasses And she was like. Oh okay, where is it? I said Burlingame And she said: oh, how will I ever get to Burlingame’cause? She was down with us in East Palo Alto And I just remember so overwhelmed and feeling like how can I practice medicine? How can I do this? I know I’m drawn to care for underserved patients, but how can I do this and not completely burn out? Because as physicians we inherit failed social policy? It was a failed social policy that put me in that situation, And there was no way I could sustainably practice and care for this population unless I started to figure out how to change these policies and get activated around that And that’s been a bit Part of my career and what I’m gon na talk to about in our last 15 minutes for this session. But medical school had not prepared me to do that Not even slightly. I went to Berkeley and got a public health degree because I knew I needed those skills and then I was graced with Sherri Sager and Lucy Crane coming into my life, both of whom took me to Sacramento. I spent many many evenings in Lucy’s living room planning and strategizing and building capacity in pediatrics to address the policies that create the problems. So I’m, not gon na show you any statistics. Like I,’ve learned a lot just listening and I thought I knew a lot about Medicaid. But I’m gon na tell stories about how we are working in pediatrics and how I hope we can start creating trans disciplinary action together with other fields to improve the health of children. So the story I wan na tell first is what happened in the fall of 2016. So we’d come through an interesting election and we’re hit with a series of headlines that threatened a lot of what we care about headlines around. Repealing the ACA and changes around immigration policy And the pediatric residents that I work with at Stanford came to me an said. We are really worried about our families. We are hearing from our families that they are scared that they don’t want to come to clinic that they’re gon na lose their healthcare coverage. What could we do about this And part of my job? There is to talk about the social determinants of health and to teach them about health policy, And so I said well, I don’t know let’s think Let’s throw it open. We got to talk to Sherri, So that’s. My first call all the time And she said well why don’t we have a town hall, So we opened up a town hall and not just to our physicians at Packard but to all staff. Emails went out to everyone saying if you’re concerned about the changing kind of prevailing wisdom coming from the east coast. Right now come talk to us, And so we held a town hall and had three quick presentations on the changes around Medicaid around immigration and about funding for pediatric research And then just opened it up and said what it was. A group about this size said: what do you guys want to do about it? You’re people who came out on a whatever it was Tuesday night to talk about this. What are you interested in And we brainstormed together for about an hour, And this group of people said what we want to do is have a strong, coherent voice together to fight for our families and to fight for our kids, And that was the beginning of what We call our Policy Response Team that now exists down at Packard And we kinda came together and had two main goals. One was to organize and strengthen our local professional community so that we could better advocate together in a real time, sensitive way when different issues came forward, And we also wanted to educate ourselves. We wanted to educate the next generation of pediatricians, as well as everyone around us about the important impact that these things were having on our families. So over the last year and a half we’ve taken a lot of action together. You can see some signs here around different issues: DACA and CHIP being a couple, big ones And the ways we’ve done – that a lot of teaching sessions. So we went from having a couple policy updates a year to closer to 12. So almost every month we’re having a different topic and teaching the residents about these issues And then the importance of letting we said go into those town halls. Our legislators come home, They have town halls and we not only have them on our calendar. We send emails out to everyone, there’s, a town hall who can go, Who wants to go together? Let’s carpool, let’s get down there And you can see we wear our white coats. We stand up. We talk about kids, We talk about the importance of these issues, Sometimes when it’s – Anna Eshoo,’s, town hall, for instance. We thank her. Thank you for being a champion for children. We appreciate that You have to shore up those who are your champions in Washington and who consistently are a voice for the families that we care about, And it’s interesting. When you stand up and talk at these things, the media follow you out and say, excuse me, excuse me, can we get a quote, And so our residents and our faculty have had many opportunities to talk and get our voice out even further, And one thing I’ve noticed, I think it can feel intimidating to go by yourself. This idea of I’m gon na look it up and I’m gon na go and I’m gon na speak to people, But as a group, people seem to love it. Like okay, who can go this Saturday afternoon and we’ll all go grab lunch and we’ll think about what’s happening and then lets just all go together And if it’s your first one, you can just sit there. You don’t have to say anything, You know so this idea. I think that we’re not alone, We’re in this together and we really need to start getting more organized. I think in working together with this, And we would certainly welcome our colleagues who are again in different fields joining us on these, Because I think we can all tell those powerful stories. We are getting very organized about letter writing. We have lots of opportunities. Every single teaching conference that we do is accompanied by an opportunity to send letters to tweet. I’m gon na get to that in a minute To get our voices out to make phone calls, But the letter writing if, for instance, we have a grand rounds that has a policy angle. We had one recently on the increasing price of insulin and just how crazy that is what’s going on, And so, where there’s, something that again, that failed social policy that we are all inheriting. We have out kind of like where we signed in and got our badges at grand rounds. We have a similar table. There are letters out there to make it easy for you Grab one of these. Take it in write it. While you’re sitting in grand rounds, Drop it off at the end or do it at the end and we’ll get that sent for you, So just putting it in front of people Operationalizing, we could have an advocacy letter today right. We could take advantage of the time that we’re together to raise our voice together, make it easy for people to address these policy issues. We’ve coordinated greatly with the American Academy of Pediatrics, where Lucy was enormous leadership role for many years to raise our voice even more broadly and to coordinate things nationally. So one of our opportunities in California and Lucy eluded to it is that years ago we built a collaboration between the 14 training programs in California, and I did that with Lucy with Dr Andequo and Gina Lewis, both up here and reached out to the other training Programs and said hey, we really could have a much more powerful voice in Sacramento if we organized ourselves and if we spoke together in a much more coherent way. And so we’ve reached out on these American Academy of Pediatric days of action, because that kind of is an umbrella across all of our campuses. We’re all parts of the AAP, And so we take action when they have days to take action together. We make sure that every single program in California is participating and the voice roaring out of California has not been small. I’m very proud to say, And because of all this I’m, not a social media person. My daughters will tell you, I’m hopeless, But I have joined Twitter And it is a part of my job. It is a really important way to advocate And I asked Lucy. I said what’s your Twitter handle for this meeting, Because I took pictures of Lucy and Amy standing after I would be tweeting about this, And people across the country who follow me would be hearing about this. I’ve wanted to thank Kaiser for that great slide. I used that slide. You used all the time I was gon na write. I already know the tweet I’m gon na send thank you, Kaiser Family Foundation. You know we continue to use your site, But Kaiser will see that There’s somebody at Kaiser watching that today their Twitter feed. It is a really powerful way, and this is the very first tweet I sent up there on top. It says Firsttweet. So your first tweet is always followed, But it’s interesting because at the morning conference and we were getting the residents ready to do this Twitter storm – I said: okay, everyone get out and log on to Twitter And they all looked at me And I’M, like you, are all on Twitter right And they’re like no laughter – and I was like, oh my really And they’re all on Instagram and Snapchat, which I’m. Aware of, because I have teenage daughters And they’re like Twitter.’s like for grown ups laughter, Which explains why I like it and I’m, not on Snapchat and Instagram. It is actually work. The people on Twitter are having conversations about policy about guns, about taxes. It is not social in the same way that I had thought of the Facebooks and everything else This I really have shifted in the last six months. This is a part of my job. It is my job to get it out there. It is my job to stay on for it And the people who make decisions, listen to this conversation And that’s why we have to be on it. So I would encourage you, maybe set a goal to at least talk to someone about getting on Twitter. It’s really not hard at all. I was surprised So as an example of the power of Twitter, the American Academy had a day of Stand for CHIP because we were just so unbelievably frustrated with that situation Took a lot of action. That day, We had good media coverage, not just at Packard but across the state, And here are the numbers. We used two different hashtags: It’s kinda how Twitter organizes their conversations, So one hashtag was DontCapMyCare. It had about 6 000 posts, snatched nationally, which means we reached four million individual people. Keepkidscovered was the other hashtag. We used 8 000 posts, almost nine million people And having spent two years working part time in Sacramento’cause. I wanted to understand this policy better. I can tell you the staffers, who report directly to the legislators, sit in front of screens with the Twitter feed over here and they watch what’s called trending, What’s trending? What’s everyone talking about! What is this? What is this don’t cap, my care? What is this keep kids covered And they will click through and they will look at our conversation So on both on this day, when we did this, we trended all day long. We know we reached every single staffer on the hill, with these messages that day And that’s, why? This is important That’s? Why this matters? Because of this, because our residents have just been unbelievably inspiring Sherri asked if she could take them to Washington with her on one of her trips, There’s a couple of them over here on right, Lee and Jen, So they got to go to Washington, walk The halls with Sherri, which is where I got my education, So it was real pleased that they were able to do that. We’ve also created a story bank, because the power of stories is so important and what this is is a secure, Google doc in our hospital that our residents and others if they have stories if they are feeling frustrated and they want to put their story Down they can Here’s, one somebody put in A mother of two school age. Children with terrible oral sores was afraid to come to the doctor or the emergency room because she has an electronic bracelet is worried about getting deported. She was so scared to come in that by the time they arrived, both children were severely dehydrated. So we get stories all the time. It is a way for the physicians and the caregivers to vent to put their story down to share what they’re. Seeing We have tons and tons and daily examples of people delaying coming in because of fear of immigration, We have people who delayed the worst is a kid who got delayed, getting a really important diagnosis that probably changed his course And so Sherri takes these stories and She takes them to Washington and she shares them, And she says this is what’s happening. So we take that voice and we take it right to our policy makers. So the story bank has been something that’s been both therapeutic. I think and effective as an advocacy tool. So how did we do this? We got ourselves organized incredible support from our institution And no matter where you work. I just would encourage you to try to do something similar. We have great support from our CEO across the without question. He supports us. We send out weekly emails to everyone on our Policy Response Team each week to tell them kinda what’s going on Here.’s, the update from DC et cetera Here:’s. How you can take action? We have these meetings, We use an app called Slack to keep ourselves organized, Sherri hates it, but it does work. I promise And I think going forward. This could really be more powerful in an interdisciplinary way And that’s – what I’m excited to be here about today to join forces with other voices with our parents and our patients, Because I think at that point we really would be unstoppable And I’ll just finish to say that quickly. This is something that I’ve been working on for about the last 10 years, building things in California, There’s the original group in California and just a shot there of how we are in Sacramento. We’ll be in Sacramento, mid April, taking our voices, But we’re. Also, this model of coming together across the state is something that’s kinda caught on and it’s been really fun. I’m now leading different statewide collaboratives. In other places and different academic programs from across states are coming together to build their voice, And so right now we have collaboratives in California, Missouri, North and South Carolina and New York. I was just in Illinois last week, They’re getting on board New Jersey,’s actually already started, and next up is Texas. These are the states that are interested, And so the vision by 2020 is that we will have 114 out of about the 200 training programs in the United States, advocating in the way that I’ve shown you that we’re doing in California, Because unless We engage in the policy, we are not going to be able to really stand and care for our children in the way that we know that we can. So I invite you all if this kinda sparked anything to please reach out Medicaid, as Amy and Sherri have said, is so vital. It’s super important for children with medical complexity, and we are really at an all hands on deck moment. It’s time to unify and speak up for kids. So this is how you can reach Sherri, and I as well as if you’re on Twitter yay. You can follow us And thank you again so much not just for the invitation, but for about 20 years of mentoring, me Lucy and Sherri and happy to take any questions that you all might have.
Children’s Hospitals and the Importance of Health Insurance and Medicaid
