Ep. 83: The KIDS Health Act: Whole Child Health for the Nation (Pt. 1 of 2)

The Kickstarting Innovative Demonstrations Supporting (KIDS) Health Act is a bipartisan and bicameral effort now before the U.S. Congress that would establish a holistic approach to children’s healthcare by integrating mental and physical health services for children and youth who are eligible for both Medicaid and the Children’s Health Insurance Program (CHIP). This legislation would allow the states to design financially sustainable models to enhance training for their healthcare workforce and improve health information technology systems to better facilitate data sharing, early intervention, and care coordination across sectors that serve children.  

Learn more about the KIDS Health Act and listen to Part 2.

Guests:
Lisa Blunt Rochester, U.S. Congresswoman, D-Delaware, co-sponsor of the KIDS Health Act
Michael C. Burgess, MD, U.S. Congressman, R-Texas, co-sponsor of the KIDS Health Act
Cristian Lemus Zavala, MSW, Care Coordinator, Nemours Children's Health, Saint Francis, Delaware

Host/Producer: Carol Vassar

Views expressed by guests do not necessarily reflect the views of the host or management.

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Transcript

Carol Vassar, podcast host/producer:

Welcome to Well Beyond Medicine, the Nemours Children's Health Podcast. Each week we'll explore anything and everything related to the 80% of child health impacts that occur outside the doctor's office. I'm your host, Carol Vassar, and now that you are here, let's go.

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Well Beyond Medicine!

Carol Vassar, podcast host/producer:

If you are looking for bipartisan work happening in our nation's capital, well, look no further than the Kids' Health Act, brought forth on each side of Congress by elected officials from both sides of the aisle. In the US House of Representatives, Congresswoman Lisa Blunt Rochester, a Democrat from Delaware, and Congressman Dr. Michael Burgess, a Republican from Texas. And in the US Senate Senator Tom Carper, a Democrat from Delaware, and Senator Dan Sullivan, a Republican from Alaska.

The KIDS Health Act is bipartisan and bicameral. KIDS, in this case, is an acronym that stands for Kickstarting Innovative Demonstration Supporting Kids Health. The bill would establish a holistic approach to children's healthcare by integrating mental and physical health services for children and youth who are eligible for both Medicaid and the Children's Health Insurance Program or CHIP. When passed, it would work through the states to allow them to design financially sustainable models to enhance training for their healthcare workforce and improve health information technology systems to better facilitate data sharing early intervention and care coordination across sectors that serve children.

Over the next two episodes of this podcast, we'll talk with each of the bill's co-sponsors on the importance of creating a culture of whole child health across our nation. But first, there is a place where we know that whole child health and active care coordination at the primary care level is happening and working to improve children's health. And that's in Delaware. Cristian Zavala is a care coordinator with the St. Francis Primary Care Office of Nemours Children's Health in Wilmington. It's a typical primary care office providing well-child visits, urgent care, vaccinations, medical education, and the like. Cristian's role as a care coordinator takes wellness to the next level, bringing non-medical interventions such as housing, food, and transportation into the picture for families. It's a role that's part advocate, part medical educator, part liaison, part diplomat, and part community resource ambassador. Here's Cristian Zavala to explain more about this complicated yet very valuable role.

Cristian Zavala, Nemours Children's Health:

Sometimes, the families or individuals we're helping, they needed just a little helping hand or just someone to guide them through something. And as a care coordinator, we're there to do just that. It could be from connecting to resources to explaining a care plan that the doctor has or just advocating between the patient and the doctor. We're that bridge, trying to bridge any gap that we have.

Carol Vassar, podcast host/producer:

It sounds like what you do is just about everything that's not in a doctor's job description?

Cristian Zavala, Nemours Children's Health:

So yes, that's what I like to say too. I'm like, the doctor does the medicine and we do a little bit of everything else.

Carol Vassar, podcast host/producer:

And you explain it differently to each family, I'm guessing based on what they already understand and what they need to know moving forward based on the diagnosis?

Cristian Zavala, Nemours Children's Health:

Yes and no. So sometimes, we do come in because of the diagnosis. Let's say it's a new diabetes diagnosis, and the family just needs education on what that actually is. Or sometimes, the family needs assistance with connecting some resources, such as food or transportation assistance.

Carol Vassar, podcast host/producer:

So you've mentioned the word connecting. Give us a few more examples of the process that you go through to connect a family with things like early intervention services like the Child Development Watch, PT, speech, OT, those kinds of things.

Cristian Zavala, Nemours Children's Health:

So here in Delaware we have a program called Child Development Watch, which is just early intervention. And here at the office, the doctors do some assessments on the patients, and then when they're not sure, if the patients need a little bit more evaluations, they send them to this program. So at this program, part of what I do is we send a referral over to the agency, and then they connect with the families to do a full assessment of the kiddos just to make sure everything's age-appropriate, or if they need some little assistance, we connect them to the right processes basically, or agencies such as physical therapy, speech therapy or occupational therapy, just a little bit more assistance.

Carol Vassar, podcast host/producer:

It sounds like you have a great relationship and partnership with Child Development Watch. It's a great example of how healthcare can work with other partners in the community to support kids, their families. What are some other examples of the work you do with organizations and agencies and other sectors? You mentioned providing food or finding ways that people can get food if they don't have enough.

Cristian Zavala, Nemours Children's Health:

To backtrack a little bit, Nemours is doing something with the social determinants of health. We take a look at all the domains, and sometimes the families do a questionnaire, and that's how some of the issues come up, and that's how the providers get me. Some of the immediate needs that I've seen so far is food. We have a lot of families that have food insecurity. So something that I did was I connected with the agency here in the area that they provide non-perishable food boxes that I have here on hand. When the food insecurity question comes up, and I meet with the patients, if they accept the help, I'm able to give them that food to go. And then that's the immediate solution, but also we can work on getting something long-term, sustainable, connecting to either the food bank or connecting to WIC depending on if they have a child that qualifies.

Carol Vassar, podcast host/producer:

What are some other examples? I know that families need cribs sometimes. Talk about that.

Cristian Zavala, Nemours Children's Health:

So here in my department specifically, we had one of my coworkers; she's great; she connected with the state, and with the state, they have a program for basic cribs for kids, so safe sleeping. So one of the great things we've been able to do, we partner with them, and we provide anyone who can't afford a crib or anything along those lines a free cribbing clinic. So we give them the crib and then some educational materials on safe sleeping and it's something that you never knew some families would need a crib, but we have them here and the importance of just sleeping or co-sleeping.

Carol Vassar, podcast host/producer:

So partnering with the state sounds like it's a big portion of what you do. One other thing that I know you do is you help families get car seats. Most people don't think about they have a baby shower, they get a car seat, maybe two, but not everyone has that. Talk about the car seat program.

Cristian Zavala, Nemours Children's Health:

It's an initiative through the Department of Transportation here in Delaware. What we are able to do, we partner with them and we get some car seat vouchers. And families that don't have a car seat, we give them this voucher, I fill it with them in the office, and then I give them the direction. So if they go to the DMV, they get an education on car seat safety and how to actually install the car seat themselves too. And it's for a very small donation that the families can do. It's very affordable compared to the actual cost of a car seat. So as a partnership that we have here with the Nemours and the Department of Transportation of Delaware,

Carol Vassar, podcast host/producer:

And you get so much more than just a car seat. You get the education around it.

Cristian Zavala, Nemours Children's Health:

Yeah, so hands-on experience. The families are able to actually install a car seat and ask any questions right there on site.

Carol Vassar, podcast host/producer:

I'm sure there are many partners beyond the state of Delaware that you work with. Can you think of some off the top of your head?

Cristian Zavala, Nemours Children's Health:

WIC, the whole country? All the food banks basically. Because my team, we span from the whole Delaware Valley. We have primary care offices here in Pennsylvania and Delaware as well. So any agencies that we have, we team up with them.

Carol Vassar, podcast host/producer:

Let's talk about some of the patients and families that you've helped. What types of issues have they faced and how did you help address them?

Cristian Zavala, Nemours Children's Health:

Unfortunately, here, being in Wilmington, there's so many things that our patients are exposed to. Primarily, in this office, the population that we serve here is a Spanish-speaking population, and a lot of the times they don't have the language or don't know the area, or there's just other issues that impact them, like violence. So, one particular family that I can think of right now is she's a single mom of three kids, and this mom, she only speaks. And two of her three kiddos are developmentally delayed, so there's a lot of specialties that are involved with all three of them. So, constantly, we go through all the schedules of appointments to make sure she gets to everything she needs to do. I have connected her to the state agencies for anything that she needs. She used to live in a very dangerous area. So, we connected to the housing authority, and she was able to move out of that area. Now, she's in a safe area that's more comfortable for her as well.

Carol Vassar, podcast host/producer:

Does transportation become an issue for this family?

Cristian Zavala, Nemours Children's Health:

Yes, transportation is always an issue. She relies on the public transportation system a lot, but due to the state of Delaware Medicaid program, she does have transportation medic benefits. So, with that, we're able to use those benefits to get her to all kinds of appointments.

Carol Vassar, podcast host/producer:

So you really have to know where to send people when they have a need, and it appears before you. How important is it to be able to give families those kinds of tools and resources as they support their kids?

Cristian Zavala, Nemours Children's Health:

Right, so I mean it's so important then. Sometimes, they don't know where to turn. Those needs or those agencies are only as good as they're available. Sometimes, we have a program one day, and then the next day, it's gone. Everything's constantly changing. We have to keep up with what agencies still have funding. So a lot of our families here rely on that every single day.

Carol Vassar, podcast host/producer:

Any other examples of patients or patient families that you've helped, maybe in the older years, teen years?

Cristian Zavala, Nemours Children's Health:

We had another kiddo who, the way he came into our office, there was some physical abuse that he was exposed to, and through that experience, he had started some anxiety symptoms to the point that it escalated to multiple anxiety attacks that ended up in the emergency room. It's really hard for a family to go through that, especially when they don't know the healthcare system, and they're also brand new to the country. And this specific example, one of the things that I do in my role, we follow up on emergency room visits. We give them a call to the parents or the guardians, and we say, "Hey, we're just checking up on so-and-so. We noticed that you went to the emergency room. Is everything okay? Do you need anything?" And in this case, I have a really good relationship with this mom, so she said, "I don't know what's happening, but we've been into the emergency room because he thinks he's having a heart attack. But the doctors were able to explain to him everything is good with his heart, it is just anxiety."

Through that, I was able to connect them to our psychology team in office. I got an appointment with her right away as soon as we got done speaking. And the kiddo, he comes in and sees psychology now on the regularly. And the great thing about this is now, because he built that report with his psychologist, he comes in here and learns all these coping mechanisms that he's been able to stay out of the emergency room through all the things he has learned with the psychologist.

Carol Vassar, podcast host/producer:

It sounds like the work that you've done has really paid off for this young man.

Cristian Zavala, Nemours Children's Health:

Yeah, for sure. Sometimes it's little things, sometimes it's big things, but as long as our patients get the tools and resources they get, it makes it all worth it.

Carol Vassar, podcast host/producer:

It sounds like a lot of it has to do with relationships, not only your relationship with the patient and the families but also the relationships with WIC and Medicaid and the state of Delaware and the services that they have to offer. You're embedded right in the St. Francis Clinic, part of Nemours Children's Health in Wilmington. Why do you think it's so important for children and families to be able to access people like yourself, care coordinators, or even social workers right there at the doctor's office?

Cristian Zavala, Nemours Children's Health:

Well, just think about it. Some of these patients, they come in here so often, especially our newborn kiddos, they're here weekly, monthly, and they build that relationship with the pediatrician. So, who better than to handle some of those needs? The pediatrician they already have this wonderful relationship with, they trust them, and we're able to do everything in office for a little bit. So we can connect to resources here or if we can't meet that need, we know where to send them to.

Carol Vassar, podcast host/producer:

When you do your job, how do you see that as going well beyond medicine?

Cristian Zavala, Nemours Children's Health:

The things they do, the families, they tell us all these stories, very personal details. It's not just coming in for your wellness visits and immunizations. We do more than that here. We screen to make sure the families have all the tools they need at home, and if there are some resources that are missing, we try to link them with the appropriate resources. So the things we do here is well beyond medicine because we are not just looking at the medical piece, we're looking at the whole family and child. We have the relationship with the patients, the families; they trust us, and that's why we can do our job, because they let us help them, and just if we have the tools and resources available, we can get them to a better place.

Carol Vassar, podcast host/producer:

You've been a care coordinator for five years. Do you find the job rewarding?

Cristian Zavala, Nemours Children's Health:

Yes, every single day. It's never just the easy every single day, there's always something going on that, especially as a social worker, if I'm involved, it's usually not always a good thing. But I see it as those little wins because sometimes it's not about making this huge difference. It's just making that little difference in a person's life. And that could be as simple as catching a kiddo who hasn't been to a primary care office in years, and now they're caught up with immunizations. Or it could be as simple as connecting someone to a dentist or teaching a family how to be independent and making those calls to schedule the specialty visits. So every day it's such a rewarding job just because of everything that the families we can see with them and all the changes, and it's just a great thing to see.

Carol Vassar, podcast host/producer:

Cristian Zavala is a care coordinator at the St. Francis primary care location of Nemours Children's Health in Wilmington, Delaware.

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Carol Vassar, podcast host/producer:

Cristian's story as a care coordinator is just one example of an effort that works locally to address and improve whole child health in a financially sustainable manner, just the kind of innovative programming the KIDS Health Act would support developing across the nation. Introducing this to the US House of Representatives has been the bipartisan effort of Congresswoman Lisa Blunt Rochester, a Democrat from Delaware, and Congressman Dr. Michael Burgess, a Republican from Texas, who come from very different backgrounds and represent very different populations but who have found common ground in supporting whole child health. They serve together on the House Energy and Commerce Committee, where the dais does not come between them.

U. S. Representative Dr. Michael Burgess (R-TX):

First of all, the Energy and Commerce Committee, although yes, Representative Blunt Rochester and I sit on opposite sides of the dais, the Energy and Commerce Committee does deal with issues that are not themselves inherently partisan. So there's that backdrop, but you are also quite correct; the districts that we represent, she is the at-large for the entire state of Delaware. I am from a district that's about the size of a county back in Texas. Our constituencies are vastly different. But still, you look at something like this and can you come together? Can you come to some agreements that put kids first and make sure that the healthcare dollars that we are spending are being spent wisely?

U. S. Representative Lisa Blunt Rochester (D-DE):

I'm glad that you pointed out that we come from different backgrounds, different parts of the country, but we both have a common goal of making sure that our children are safe and well. And in addition to our different political backgrounds and places that we live, we also are both different in terms of our professional backgrounds. For me, I served in Delaware as our Deputy Secretary of Health and Social Services, and so I come from a background as a health official. I also served as the Secretary of Labor for Delaware, and so jobs in the workforce is really important to me. Then, having served as the CEO of the Metropolitan Wilmington Urban League in Delaware, really having a focus on things like health disparities and making sure that, again, we are well and that we look at this in a comprehensive way. And then lastly, I'm a mom and now a grandmother, and so I truly do care about young people.

And then Dr. Burgess, I mean his work experience. He served for over 30 years as an OB/GYN in Texas. So, he also knows just how critical the needs are for comprehensive care for children and families. And it's really why I joined with him to introduce other bipartisan legislation. Back in 2020, we both worked on addressing the youth mental health crisis through the TIKES Act, which was a name that Dr. Amber Ray on our team came up with. And it really focused on expanding telehealth access for Medicaid and CHIP participants. So we worked together before. Part of that bill was actually put into the bipartisan Safer Communities Act, which passed. And for me, having someone who, again, we've got differences, but we come together in this common goal. And for us, when I was looking for a co-lead, I wanted to make sure that it was bipartisan and he was the perfect person to work with us on the KIDS Health Act.

Carol Vassar, podcast host/producer:

As a practicing physician, Dr. Burgess has always considered himself patient-focused. As a US Representative, his experience as an OB/GYN provides him with a unique lens on the connection between patient-centered care, value-based care, and whole child health.

U. S. Representative Dr. Michael Burgess (R-TX):

Well, patient-centered care is by definition what value-based care is going to encompass. Yes, I was a specialist in OB/GYN, but I was also a primary care physician. Many patients, I was the only doctor they saw during the course of the year. So it is extremely important to me that we allow those patient-centered practices to be able to not just survive, but to flourish, and value-based care is a way to achieve that goal.

Look, we all know we can work harder, work longer hours, and get more patients seen in a day, but we also need to be certain we're doing a good job with each and every patient that comes into our treatment rooms. In a value-based system, you do focus more on outcomes, and the sound bite is its value over volume. And again, for someone who really believes in a patient-centered approach, that's a logical place for me to be. A lot of the work that I've done in trying to work on payment reform and Medicare has, in fact, been in the value-based system. The unfortunate part of things is that that also can be difficult to construct. Now we're talking about purely in the pediatric population, and I'll just tell you even larger in the Medicare population, that has been an extremely elusive goal, but one that it's important that we continue to focus on the outcome for the patient, because after all, at the end of the day, that's what we were there for the first place.

Carol Vassar, podcast host/producer:

For her part, Representative Blunt Rochester's focus and passion for whole child health and the KIDS Health Act centers not only on her time serving as a healthcare official, but her life's experiences as a teenager, a mother and a grandmother, and relating that to her constituents today.

U. S. Representative Lisa Blunt Rochester (D-DE):

The focus really started with being a teenager myself. I talk a lot to students, and a lot of times I will read to them, I'll recite, I'll say, "Do you mind if I recite a poem that a teenager gave me that shares her challenges and her ups and downs?" And I recite this poem and then I tell them that teenager was me when I was 14 a few decades ago, and that I wanted to share with them that I never wanted to forget what that was like. But then you look at the things that they're facing that are so much more challenging than even when I was coming up, them living through a once-in-a-lifetime pandemic, them witnessing, and we collectively witnessing the murder of George Floyd. Many of them have told me they are extremely concerned about the planet and whether there will even be a planet for them.

And then the fear of gun violence in our schools and in our communities. The advent of social media. We didn't have social media. And so the issue of real-time pressures from social media, in addition to things like cyberbullying, these are things that we didn't have to deal with. And so you couple all of this on top of it, and then the pandemic exacerbating things with online learning and feelings of isolation, it has just been a really challenging time. And so because of all of this. We've seen data that shows whether it's the CDC report that says over the last 10 years, feelings of persistent sadness and hopelessness, as well as suicidal thoughts and behaviors, have increased by approximately 40% among young people across the country. And then suicide is the second leading cause of death among young people aged 10 to 24. And in Delaware, just in my state alone, one in five children specifically have a mental, emotional, or behavioral disorder that we know of.

And so, with all of that in mind, and as a member of the Health Subcommittee and the co-chair of the Social Determinants of Health Caucus, I started working on this across the aisle because I knew that we needed legislation that was going to look at the whole child, mental and physical, and address those social determinants, or as we now say, social drivers of health. We needed to make sure that this bill would establish a coordinated and comprehensive care approach and use value-based payment models to work on and include not just government, but the nonprofit and private sector to help in this. And then third, to invest in our healthcare workforce and health information technology infrastructure because we know that data sharing, in order to do this comprehensive work, this collaborative work, we don't need families repeating information five, six times. We need to be able to share this data and for states and organizations to have the ability to do it.

And that's really why I had introduced before this bill on the bipartisan Caring for Social Determinants of Health Act with Representative Gus Bilirakis from Florida, a Republican, to provide guidance to states to address the social determinants of health under Medicaid and CHIP because we know that the social determinants deal with things like where you live. Do you live in a place where there's a food desert? Are there doctors available? Are you in a place that is near a toxic facility, and that's impacting the health status of those children? And so again, the KIDS Health Act really emphasizes the need to integrate the mental and physical health services for young people who are eligible for Medicaid and CHIP, and again, establishing a whole child health model.

And that's really at its core, is to really help us to work together to integrate the needs of children and to be able to address those things. And as I said, this act, what's so special is that it would allow states to design financially sustainable models that will enhance training for our healthcare workforce and also, as I said, improve that technology and that coordination. So I'm very excited about it. It is an add-on to work we've done with Nemours. We actually, one of the most important visits we had to the state of Delaware was held a roundtable in partnership with Nemours. And ee had the Secretary of the Department of Health and Human Services, Secretary Becerra, come to Delaware and have a conversation about mental and behavioral health challenges, but also what we can do for the future. And I, again, so value the support of Nemours in these efforts to keep young people healthy, including my granddaughter, who actually is a Nemours patient.

Carol Vassar, podcast host/producer:

So, if and when this bill becomes law, what do representatives Blunt Rochester and Dr. Burgess think it might catalyze for our nation's children?

U. S. Representative Dr. Michael Burgess (R-TX):

Well, look, we're going to hear a lot of discussion about how much money we're spending as a country and how much money we're spending in health, and are the outcomes what we would all want? And the answer to that question may be no, but you've got to start someplace. And what better place to start with delivery of healthcare to the country's children and make certain that we focus on the right things, that we focus on outcomes, we include a robust component for their mental health, and maybe begin to set the stage for going forward that we're able to affect a number of improvements just from top to bottom in our healthcare system.

Look, I also serve on the Budget Committee. I serve on the Rules Committee. I get it.  People are concerned about the amount of money we're spending in this country on healthcare. I'm concerned about it, too. But here's the thing. It's not going to be solved by just reducing the dollars that are spent. You've got to spend the dollars more wisely. And this bill that I've done with Representative Blunt Rochester is a step in that direction.

But look, we're going to hear a lot of discussion about how much money we're spending as a country and how much money we're spending on health, and are the outcomes what we would all want? And the answer to that question may be no, but we've got to start someplace. And what better place to start with the delivery of healthcare to the country's children and make certain that we focus on the right things, that we focus on outcomes, we include a robust component for their mental health, and maybe begin to set the stage for going forward that we're able to affect a number of improvements just from top to bottom in our healthcare system.

U. S. Representative Lisa Blunt Rochester (D-DE):

I'm so excited about it because it really has the potential to revolutionize the way that we deliver comprehensive healthcare services to our young people. First of all, looking at the whole child, their mental as well as their physical needs, no matter who they are or no matter where they live. I think there's also a component of this. Not everybody maybe gets the health side. Some people are concerned about the money. This is a more cost-effective way of having real impact. That's why we talk about value-based care. And so the idea of even creating demonstration projects and pilots to be able to show that it works, that it'll have better health outcomes, but it will also be more cost-effective and more efficient is also important.

And I think, I mean, the reality is, I've been working on these things for a long time, and in the past, there were so many reasons why people did not collaborate. Sometimes it was because the funding sources actually made people competitive instead of collaborative. Sometimes it was because of privacy issues and making sure that we could share the data. And so again, what we hope to do here is transform how we provide these services and this care so that, ultimately, kids are better off. And what I love, too, is that it's bipartisan and bicameral, and I think that's truly a testament to how this effort is coordinated and, in the words of Nemours, goes well beyond medicine. So I'm very excited and hopeful and look forward to us passing these bills and getting them to President Biden's desk.

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Carol Vassar, podcast host/producer:

Many thanks to US Representatives Lisa Blunt Rochester and Dr. Michael Burgess for talking with us today about the KIDS Health Act. Thanks also to Cristian Zavala from Nemours Children's Health for sharing his care coordination story with us. There are two other sponsors of the KIDS Health Act in the US Senate, Senators Tom Carper of Delaware and Dan Sullivan of Alaska. And we'll talk with each of them in part two of our KIDS Health Act podcast.

If you'd like to hear any of our previous podcasts, there's an easy place to go to hear them all: NemoursWellBeyond.org. That's NemoursWellBeyond.org, where you can also subscribe to the podcast and leave a review. Thanks to our production team today: Cheryl Munn, Che Parker, Susan Masucci, Lauren Teta, Steve Savino, Daniella Gratale, and Casey Osgood. I'm Carol Vassar, until next time, remember, we can change children's health for good, Well Beyond Medicine.

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Well Beyond Medicine