‘You’re Treating the Kid, but the Family Is the System’

Only about 20% of the children in the United States who experience behavioral health issues receive specialized care, and it’s not hard to understand why. Thanks to a nationwide shortage of providers and mazelike insurance plans, a simple referral from a pediatrician can easily turn into an odyssey of forms, fees, missed phone calls, and weeks-long waits for appointments. For parents who are managing the stresses of living in poverty or negotiating cultural or language barriers, the experience can be even more daunting.

For more than a decade, pediatricians and psychiatrists have made a push to integrate behavioral health services into primary care settings in order to streamline communication, facilitate prevention and care, and reduce long-term healthcare costs. The early results have been promising, and the evidence that behavioral health integration can improve outcomes for children is getting stronger. At the same time, national surveys have continued to highlight vast numbers of untreated children and ongoing racial disparities in care, signaling that much work remains to be done.

Behavioral health integration comes in many forms, ranging from minimal collaboration across separate locations to fully merged practices. One model at the latter end of this broad spectrum, TEAM UP for Children, has pushed the definition of integration even further to emphasize close partnerships with families and community partners. TEAM UP is currently found at three community health centers in Massachusetts and is planning to expand to three or four more over the next several years with support from the Richard and Susan Smith Family Foundation and The Klarman Family Foundation.

At the core of the model is a three-person team that includes a pediatrician, a behavioral health clinician, and a navigator role called the family partner. This team works together — often in the same exam room, during the same appointment — to connect patients seamlessly to behavioral health services. Just as important, they also provide support to families and serve as a liaison to schools and other outside entities, in many cases long before an official diagnosis arises.

Genevieve Daftary, MD, one of several clinicians who helped shape the TEAM UP model, is the pediatric medical director at Codman Square Health Center in Dorchester, Massachusetts. HealthCity sat down with Daftary recently to talk about the challenges her patients face, the need to reframe behavioral health, and what makes the TEAM UP model unique.

HealthCity: It’s been estimated that up to 1 in 5 U.S. children has a mental health issue. How does that compare with the population of kids you see at Codman Square?

Genevieve Daftary: We average pretty close to that. It’s between 25 and 30% for DSM-level diagnoses of depression, anxiety, ADHD, and other more complicated things such as  bipolar disorder or disruptive mood dysregulation disorder.

If you include the many kids for whom we’re still working on family engagement around an issue or for whom we’re following up with a therapist or the school to get to the point where we could have a diagnosis, then it’s way up toward 50 or 60%. That includes situations that I don’t actually think are diagnoses as much as they are situations of incredible stress and trauma.

HC: What are the most common sources of stress that you see in kids and families?

GD: Some of them are gnawing, chronic things. Housing’s a big one. You’re homeless. You’ve literally been raised, from the time you were born until you were 3 or 4 years old, in a homeless shelter.

Another big one is parents who’ve had mental health issues or trauma themselves but aren’t yet well connected to help, for whatever reason. Your parent is suffering from depression or anxiety every day, and on top of that, and whatever job they’re holding, they’re also supposed to be caring for you.

Others include food insecurity — honestly, just general poverty — and then safety. A lot of families do not feel safe, either because of intimate partner violence that’s happening in the home or what’s going on outside. Some of it is the traditional things we think about, like gun violence, but some of it isn’t. I talk to families and ask, “Are you going to the park?” And they say, “We would never go to the park” because the parks are really dirty, there’s needles, there’s people they don’t know or trust. I think there’s a lot of isolation.

The Codman Square Health Center in Dorchester, Massachusetts, is one of three community health centers currently implementing the TEAM UP model (Matthew Morris).

HC: How do you determine when kids need behavioral health services versus a different type of intervention or support?

GD: Let me sound a little soapbox-y for a minute. We’ve artificially carved out mental health from the rest of health for a very long time. There’s a huge spectrum from “normal” to “abnormal,” and I think pediatrics is the place where this plays out the most. We accept a kid tantrum-ing on the floor as not having a behavioral health diagnosis, but it still can be incredibly distressing for a family. And the reality is, a tantrum for a kid who really does have behavioral health needs looks pretty much the same as the tantrum that a “normal” 2-year-old throws. It’s just the frequency and the level of function — it’s all a spectrum.

But because of the way our payer and clinical delivery systems are set up, you have to have a diagnosis to qualify for behavioral health services. You have to meet a bunch of specific diagnostic criteria, and they’re not as robust for kids as they are for adults. It’s very hard to hit them. There’s a bunch of behavioral health codes for young children that a lot of payers — and the state of Massachusetts — don’t even recognize yet.

TEAM UP accepts that behavioral health doesn’t just mean a coded diagnosis. We’re screening for risk. We’re screening for family need. We’re providing true preventative touches.

So it’s really hard to get behavioral health services for a younger kid, both because of diagnostic criteria and our desire to not pathologize something that could be normal in a developmental arc or under family stress. But if you don’t have a label, you don’t get a service. It’s really the worst catch-22 ever because we won’t pay for it unless you reach the point where you qualify as super-sick, and, yet, we know that if we just gave you some more help early on, it would probably not get to that point. More and more, there are opportunities to think about early interventions that aren’t behavioral health treatment but that absolutely could stop us from reaching the level where things get bad.

HC: How does the TEAM UP model address that catch-22?

GD: What TEAM UP has done is to say, “Kids are different,” which is a very important step to take because our systems don’t always acknowledge that kids’ needs are different and the system that supports them might also need to be different.

TEAM UP accepts that behavioral health doesn’t just mean a coded diagnosis. We’re screening for risk. We’re screening for family need. We’re providing true preventative touches before you even say you’re stressed or having a problem. But that’s part of good behavioral health integration. Can you imagine if I, as a doctor, only took care of you when you couldn’t breathe? That would be crazy, right? Medicine already does a bunch of preventative work, but in behavioral health integration, that’s not always the case.

HC: What differentiates TEAM UP from other forms of behavioral health integration?

GD: Even within behavioral health integration, there are different levels of integration. You can call yourself integrated and mostly have a great referral system where you’re closing the loop. You can also be co-located — which is what we were before TEAM UP, where there was a team upstairs and a closed EHR that we shared. You can call that behavioral health integration.

TEAM UP only accepts the highest level of integration. You’re on a shared team. Patients come in and get their care in the same place, from the same group of people. You don’t necessarily change rooms. You’ve got integrated workflows for billing, rooming — all of the clinical and operational workflows are seamlessly together.

The other thing is the neighborhood or community focus. And when I say that, I don’t just mean community health centers, although I think the fact that TEAM UP chose community health centers is really important. TEAM UP has invested in making sure we have really good relationships with our early-intervention colleagues out in the community who are taking care of young kids. They want us connecting kids to quality preschool and daycares. They want us thinking about school readiness.

TEAM UP is saying that behavioral health integration is not just going to stay in the exam room. The expectation is that our team is pushing that integration out to the community.

HC: What role does the family partner play in all of this?

GD: Traditional mental health care does not have a family partner attached to it. You need the family partner because you’re treating the kid, but the family’s the system. A child relies on a family system, a school system, a community system. They are completely reliant on all these other things, and we need to be able to connect them all.

You can’t just take a child into a room, do psychotherapy, and think, “Well, that’s going to work when they go back out into the world,” because they’re not in charge of themselves. The family partner is there to reach out to the school and help the parent understand the child’s behavior.

HC: How has the family partner changed how families experience care?

GD: Families are more confident that they’re going to get connected to services. Before TEAM UP, we were putting a lot on them sometimes. You’d recognize a need for behavioral health and say, “Here is a list of community mental health services. Give them a call.” Given the stress that some of our families are under and the things they’re juggling, finding the time to make that phone call and understanding what it is you’re asking for is hard. It’s really hard.

Before, I was so stressed when I sent a referral off into the ether. I used to be worried and alone and not sure that the family connected to the service, or that they’re really understanding or engaged in what’s going on. And now we’re walking alongside you. Parents are still encouraged to call and follow up on waitlists and things like that, but the family partner is there through that process.

Families are just more engaged in care. I think it’s easier to accept a diagnosis or a need if someone is bringing you the support right away. Now, when somebody comes in with an issue, the family partner and clinician meet them the same day, if that’s what’s needed. There’s no delay to care — versus, like, you get a call weeks later and you’re like, “I needed that weeks ago. I’ve managed it myself.” You know? And maybe they did kind of limp along and manage it, but we don’t want people limping along. We want them thriving.