Ep. 79: Locked Up – Addressing the Health Needs of Incarcerated Youth with Dr. Michael DeBaun and Dr. Elizabeth Barnert

According to the Prison Policy Initiative's "The Whole Pie 2023" report, more than 47,000 children under 18 years of age are incarcerated, with 1 in 16 in an adult prison or jail.

This statistic underpins the American Pediatric Society’s Issue of the Year: increasing access to quality health care for children who are incarcerated. It’s an effort spearheaded by the APS president, Vanderbilt University sickle cell physician-scientist-researcher Dr. Michael DeBaun, and Dr. Elizabeth Barnert, associate professor of pediatrics at UCLA, who does clinical work in youth detention facilities. They stopped by our mobile set-up at the 2024 Pediatric Academic Societies Annual Meeting in Toronto recently to discuss the year's issue, starting with how they partnered to raise awareness of the issue and work toward improving health standards for this often overlooked population of children.

Guests:
Michael DeBaun, MD, MPH, Director, Vanderbilt-Meharry Center for Excellence in Sickle Cell Disease
Elizabeth Barnert, MD, MPH, MS, Associate Professor-in-Residence, Pediatrics, UCLA

Carol Vassar, host/producer

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 w,e'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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Carol Vassar, podcast host/producer:

On any given day in the United States, more than 47,000 children under 18 years of age are incarcerated, with 1 in 16 in an adult prison or jail. That statistic from the Prison Policy Initiative, The Whole Pie 2023 Report, underpins the American Pediatric Society's issue of the year: increasing access to quality healthcare for children who are incarcerated.

It's an effort spearheaded by the APS president: Vanderbilt University sickle cell physician-scientist-researcher Dr. Michael DeBaun, and Dr. Elizabeth Barnert, Associate Professor of Pediatrics at UCLA, who does clinical work in youth detention facilities.

They stopped by our mobile setup at the 2024 Pediatric Academic Society's meeting in Toronto recently to discuss the issue of the year, starting with how they partnered to raise awareness of it and work toward improving health standards for this often-overlooked population of children. Here's Dr. Michael DeBaun.

Dr. Michael DeBaun, President, American Pediatric Society:

It's not a very complicated response, frankly. As a Black man, father, grandfather, brother growing up in a Black neighborhood, you always recognized that anytime you left the house, there was a real risk that you would be stopped by the police. And depending on the integrity of the police that stopped you, you could be in jail, or you could go home, even if you had not done anything. That reality is ever-present.

And so when I became President of the American Pediatric Society, I thought more broadly about the power of an organization with child health leaders across North America and the opportunity to have an impact on a population that, frankly, is invisible to most pediatricians. And so, it became an urgency to identify strategies that would improve the care of this high-risk children and adolescent population.

And recognizing that this was not my area of expertise, I did a quick and diligent search to who would be energetic, passionate about the opportunity to work as partners. Actually, for that person to tutor me, to be my mentor in this space. Because I have no real knowledge about what the challenges are, other than the dozen or so children, adolescents that I've taken care of that have been held in custody or my own personal experience of the carceral system.

Carol Vassar, podcast host/producer:

So you had patients yourself who were diagnosed with sickle cell disease and were incarcerated. Were they not getting the care they needed?

Dr. Michael DeBaun, President, American Pediatric Society:

They were not only not getting the care, but in several cases, there was death associated with inappropriate or inadequate care that could have been prevented with just a little bit of knowledge about the disease.

Carol Vassar, podcast host/producer:

Liz, give me the landscape. What are the issues that are faced by children and adolescents who are incarcerated when it comes to their health and their mental health?

Dr. Elizabeth Barnert, UCLA:

Sure. And just with regards to the word "children," Michael is absolutely right. There are children who are arrested and incarcerated. And that can easily be changed with policy change. Lots of states have done it or are looking to do it.

So, the issue is that incarceration itself is traumatic. And a lot of kids who are coming into the carceral system have high levels of trauma. So, kids who are incarcerated often have disproportionate mental health needs. They also often have high reproductive and sexual health needs.

For example, 1 in 3 girls who are incarcerated have been pregnant in the past. Another issue that Michael has really brought to light in this past year as the President of the American Pediatric Society is the issue of children who have chronic diseases, some of which may be life-threatening if they're not managed properly when kids are incarcerated.

Carol Vassar, podcast host/producer:

Are we looking at gaps when it comes to services available when a child or an adolescent is incarcerated? Or is it simply an issue that their health and their mental health is not addressed during incarceration?

Dr. Elizabeth Barnert, UCLA:

That's a great question, and the real answer is that we don't know. There is probably wide variation in quality and the amount of health services available across the US in youth custodial facilities, but there is not research on this. There's not reporting on it, so we really don't know.

Carol Vassar, podcast host/producer:

That's amazing. Is this a hidden population? Is this a population that people are just not thinking about? Dr. DeBaun.

Dr. Michael DeBaun, President, American Pediatric Society:

Well, it's hidden from the powers that be. The academic leadership at many of the Departments of Pediatrics are unaware of this patient population. It's not hidden to the people who are of color. We know this threat on any given night when our children get their driver's license, or they start walking in the general public area where there's a large mass of people: a football event, a baseball event.

It's not hidden from us. But it is, frankly, an invisible population to many of our academic leaders who I have a chance to interact with on a routine basis. And I would ask them as I was introducing the issue of the year and wanting to get feedback. I mean, literally, head of pediatrics at the major pediatric programs in the country.

I would say, "Well, tell me what you're doing to improve the healthcare for children and adolescents who are held in custody." Then they would look at me, and there would be a pregnant pause. "Actually, I don't know."

Carol Vassar, podcast host/producer:

That's amazing that we are missing this entire population of children and adolescents who are desperately in need of this.

Liz, talk about what we can say to policymakers, for example, to raise awareness that this is an issue. It sounds like it's really global across the US.

Dr. Elizabeth Barnert, UCLA:

Yeah, so, there's two issues I think that have become very apparent. One is the issue of the quality of healthcare that kids get when they're in custody. It's quite stunning, but we don't really have a federal standard regulating the quality of care.

What we have is the Eighth Amendment, which protects against cruel and unusual punishment. And in the Supreme Court case Estelle versus Gamble, that was interpreted that that meant that people who are incarcerated can't have cruel and unusual punishment: which means you can't have negligent care. So, that is the federal standard.

And there are some states that have no standards about quality of care, which means we're defaulting to that for our children and adolescents who are in custody.

One big issue is the monitoring and the oversight regarding quality of care. And then the availability of services: the young people actually having true access to the services.

Another issue relates to what Dr. DeBaun was bringing up: about the kids in custody and how the academic leadership and the pediatric leadership are prioritizing the healthcare of kids in custody.

Kids in custody have the right to healthcare that's at least as good as all the other kids in the community. So, they should be getting care that's at the community standard. But what we're actually seeing is that many major academic medical centers aren't engaging in the care of kids in custody.

So, it's a missed opportunity to provide excellent care. And it's also a missed opportunity to train the next generation of pediatricians about young people who are in custody.

And one thing that people need to understand is that usually the health services available in carceral facilities are very limited. So if a young person needs any kind of escalation in care, they go to the community hospital to the emergency room. And if they need specialty care, they'll be seeing specialists in the community. So it's really essential that we are welcoming and that we understand the needs of kids in custody across all care settings.

Carol Vassar, podcast host/producer:

Is anyone doing this well? Is anyone doing this, and doing it well?

Dr. Michael DeBaun, President, American Pediatric Society:

Well, I would say that there are components of programs where there is acknowledgement of the challenge. Because I've been on this mission for the last 18 months, I've had the ability to interact with my peers who, when I've asked for best models in improving the lives of children and adolescents who are held in custody, I was able to visit a program in Pittsburgh, in fact. Where the adolescent team there has identified several strategies to try to overcome some of the barriers associated with delivering the optimal care.

They work explicitly with the community educational facilities that the university has underwritten, and they're located in areas that have been historically redlined. They have used their academic expertise in urban planning to actually improve the areas where the children are at highest risk for being put in custody.

And just going there and meeting with the people in the community health center: I mean, just on a random day, I witnessed an entrepreneurial course for Black businesses to learn how to improve their profit and still deliver a service.

I witnessed a violence de-escalation course, with about 25 to 30 people who were part of the violence intervention in their local neighborhoods, schools, and the like: were literally being taught a class.

I saw two high school teachers from Westinghouse High School providing support for an 18-page term paper for a 17-year-old who was writing a term paper on the mental health of LGBTQ rights.

And so, I think there are these moments of clarity where people understand that we have to do better; we're obligated. There is a code, a contract we signed to do better for our children.

I went out to eat dinner that night at a restaurant, Café Momentum. And the restaurant serves as a training ground for children held in custody and have served over 1,000 children between 15 and 21 as employees of this restaurant.

It was just a thrill to be at that restaurant. It was worth every dollar that we spent plus more, and the service couldn't have been better. They was just so polite. "Are you happy with this? You want more water?" It was just a delight to be in that environment.

And then one of the providers who was at the table with us, she had a half-a-dozen hugs from people who were actually her former patients while they were held in custody. And they just came and hugged her.

I mean, it makes you proud to be a pediatrician that sees the value that others see in serving those who are less fortunate.

Carol Vassar, podcast host/producer:

It sounds like there's a great model in Pittsburgh. Liz, can you think of any others?

Dr. Elizabeth Barnert, UCLA:

There is great work. Another important part of delivering care to people in custody, particularly regarding the transition during re-entry, is credible messenger approaches. So having people with lived experience, working with the young people and their families in community health worker-type role.

There's a wonderful organization called The Anti-Recidivism Coalition. They're based in Los Angeles, and they also do important policy work nationally. They've been there and they give basic services like, "Let me help you get new clothing, transportation, housing."

So, helping young people to meet their basic needs, and then also providing that mentoring and that future-oriented perspective is just so valuable. And I think it really should be the standard of care in every facility.

Carol Vassar, podcast host/producer:

From those two examples, I hear that A) community involvement is key, and B) addressing the social determinants of health is another huge key. How do we go about doing that as a nation?

Dr. Michael DeBaun, President, American Pediatric Society:

That's the critical question. We have thought long and hard about this over the last 18 months. And I think our joint conclusion is it can't be done in a silo.

This is a community problem, and we have to engage in all the resources of the community. That includes both the academic and the stakeholders who live in the community. We have to have their input. Their voice is actually critical to the support of the mission. And they have insight that only can be demonstrated from a lived experience.

And so, we have some tangible strategies, one of which is to actually reach out to our colleagues in law schools, our colleagues in the school of social work. It's going to be the next generation that does it better than we do.

There's a clear fire in the college students to improve the lives of those who are less fortunate and those who've been disenfranchised, those who have been marginalized. And so we hope to tap into that energy in a constructive way to identify best practices.

And we won't have it right the first time or the second time. It's an iterative process, as is all things that we do in medicine. We start off with an idea, we try it, it doesn't quite work, and we go back and we do it together. And we keep with this cycle of trying to improve.

So we're optimistic that as we come together with these leaders in unique schools that we can identify partners that are multidisciplinary: medicine, law, social work, psychology; that can help us support our children who are essentially forced to be in a stressful situation. And when they come out, PTSD is a major component of their re-entry assessment and treatment.

Carol Vassar, podcast host/producer:

Let's talk about when they do come out. When they go back home or wherever they end up going, what kind of follow-up would you like to see with regard to healthcare and mental health services for these soon-to-be young adults?

Dr. Elizabeth Barnert, UCLA:

Supporting young people in re-entry is a really critical intervention that I think is really a high payoff. The Medicaid 1115 waivers is a great opportunity for states to invest in supporting young people in their transitions home.

What do they need? The first principle is that re-entry begins on the first day a person is in custody. You have to begin the reentry process.

Why is a young person there? I think you need to understand that a young person is within the walls of the facility so that we can support their healing, and so that there can be a process of accountability. All of that involves ultimately successful reintegration to the community.

That re-entry process needs to have in-reach in custody facilities. We need to involve families, need to involve communities with credible messaging, and have tangible plans to help young people get to their healthcare appointments get back to schools if they have education. And if we really invest in re-entry, I think we will see great success.

Carol Vassar, podcast host/producer:

What are the barriers to getting to that future state that you just talked about?

Dr. Michael DeBaun, President, American Pediatric Society:

There's an unfortunate spirit of, "You deserve this. You deserve to be punished." That type of spirit doesn't acknowledge that who among us have actually been without an error as a child or an adolescent or been in the wrong place at the wrong time with the wrong crime?"

This is a part of maturation. And if by fate you are the one that is caught doing something that is not harmful but actually is still illegal, then it's up to the state to decide whether you are punished in a way that puts you in the same situation as an adult when you're 14 years of age. That's just cruel and unusual punishment.

Yesterday, we heard from Bryan Stevenson that about 9,000 to 10,000 children are in jails and penitentiaries that house adults.

Carol Vassar, podcast host/producer:

They are actually incarcerated for something they did?

Dr. Michael DeBaun, President, American Pediatric Society:

Yes.

Carol Vassar, podcast host/producer:

How much of this also has to do with stigma?

Dr. Michael DeBaun, President, American Pediatric Society:

There clearly is a stigma with acknowledging that you're caught doing something wrong. It's a twisted world if we brag about being caught for doing something wrong and we end up in jail or held in custody or sentenced. And so the reality is that we cannot lock the door and turn away the key because these children will, by and large, come out. And they're students.

And so you lock a student up. You don't give them the resources to learn the skills that you expect of a student. You don't provide them with the mental support and the medical support that they need to come out.

Then the challenge is they are more likely to come back in with the same problem. And they learn the habits that will allow them to continue down the path of being on the wrong side of right.

Carol Vassar, podcast host/producer:

Anything I haven't asked you that you'd like to share with our audience? Liz?

Dr. Elizabeth Barnert, UCLA:

Yeah. I'd like to situate this in the moment of time where we are right now. The juvenile justice system was created in 1989 to protect the best interest of the child. How can we help a young person who did something that got them to come in conflict with the law?

And it's been about 20 years now that we've recognized that it's not healthy. We're not improving public safety to be locking up so many kids.

And so there has been great effort and accomplishment in decarceration. We've drastically reduced the number of arrests from about 2 million a year to a few hundred thousand arrests of US kids per year. That's still, I think, higher than we want it to be by a lot. But it's a big improvement.

When you think about that from a health perspective, when you think about who's detained and who's incarcerated, who's still there, what's happening is we're getting a concentration effect where you're seeing the kids with the highest mental health needs and the most complex social situations.

And so, it's a really great moment for pediatricians to be paying attention.  And one of the things I've come to see; I absolutely agree with Dr. DeBaun; that the way forward is collaboration.

But I've watched the juvenile justice reform work for the past 25 years. What I also see and believe is that in terms of improving the quality of healthcare for kids in custody, pediatricians need to take leadership of that. And by "that," I mean all pediatricians. Specialists, ER doctors, hospitalists: we have to recognize that these are our kids.

Because I talk to the kids in custody, and they know that we're forgetting about them. They tell me that we think of them as throwaway kids. They know. And so it's really, really important that we as a field of pediatrics reject the status quo. And acknowledge, as Michael says, that we can do better for the kids now more than ever. Because there's more resources, more attention, and the kids have higher health needs. And so there's just such great opportunity.

The kids have so many hopes and dreams, and I think really the onus is on us to help them. They have personal responsibility, too, but we need to be giving them more tools.

Carol Vassar, podcast host/producer:

Dr. DeBaun?

Dr. Michael DeBaun, President, American Pediatric Society:

You got to believe. You got to believe that we can do better for our children. They're our future. You got to believe. You got to believe that the children who are held in custody and the children and adolescents who come out of custody are able to recover their lives and be fruitful.

Yesterday, Bryan Stevenson talked about this young man who was in prison for a murder that was not justifiable but understandable. He served his time. But during that time, he was less than 100 pounds and he's put into a facility of men.

And yet this young man had the resilience to come out, to become an engineer, to have a family. And so, that's what we need is this grace to understand that who among us is without a sin?

Dr. Elizabeth Barnert, UCLA:

I have a brief snippet of a patient story if you'd like, that you could put in the re-entry sec.

Carol Vassar, podcast host/producer:

Yeah, go ahead.

Dr. Elizabeth Barnert, UCLA:

So, in terms of supports for young people during re-entry, a juvenile justice pediatrician told me the story. There was a girl that she had been caring for in the juvenile justice system. The girl had a history of sex trafficking. And every time a kid comes into the juvenile justice facility, they get a health exam in the system.

And so the pediatrician asked her, "Why are you here?" so that she could try to understand her health needs and her health behaviors.

And the girl, who is HIV positive, said, "I knew I had an appointment at the HIV clinic. I didn't have transportation to get to the appointment. So I knew that if I stole something, then I would get arrested. And then you guys would help me get to the appointment."

So, we have to make success in the community the easier path.  We have to help the kids succeed.

Carol Vassar, podcast host/producer:

Dr. Elizabeth Barnert is an Associate Professor of Pediatrics at UCLA, whose clinical work centers on children and adolescents in youth detention facilities, discussing the issue of the year for the American Pediatric Society: increasing access to quality healthcare for children who are incarcerated.

We also heard from APS's President Vanderbilt sickle cell physician-scientist- researcher, Dr. Michael DeBaun.

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Carol Vassar, podcast host/producer:

Covering the 80% of children's healthcare that happens outside of the clinical setting is exactly what we do here on the Well Beyond Medicine Podcast. Maybe you have an idea that fits the bill that we can leverage for a future podcast episode. Let us know by leaving a voicemail on our podcast website, NemoursWellBeyond.org.

Also on that website, you will find previous podcast episodes, along with an opportunity to subscribe to the podcast and leave a review. That's NemoursWellBeyond.org.

Our production team for this episode includes Cheryl Munn, Che Parker, Joe Gillespie, Susan Masucci, Lauren Teta, and Steve Savino.

Next time, we'll talk with Dr. Stacey Stokes, Medical Director of Informatics at Children's National Hospital in Washington DC, about how data within an electronic health record can be collected and used to connect patients and their families to required social support services ... with privacy in mind, of course.

I'm Carol Vassar. Until next time, remember that together, we can change children's health for good, well beyond medicine.

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