
Helping kids with developmental disabilities and mental health needs
Transcript
[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Upstate recently opened a biobehavioral health unit to treat children with mental health needs and developmental disabilities. Today I'm talking with Dr. Henry Roane, the program director. He's also a professor of pediatrics and the executive director of the Golisano Center for Special Needs at Upstate. Welcome back to "The Informed Patient," Dr. Roane.
[00:00:35] Henry Roane, PhD: Thanks, Amber. Thanks for having me.
[00:00:37] Host Amber Smith: I understand this is the first facility of its kind in New York state and one of only a handful nationwide. Can you tell us about it?
[00:00:46] Henry Roane, PhD: Sure, yeah. There are probably about 15 of these programs in the United States, which functionally is, all of the programs that exist in the world are in the United States, save one. So it's really a unique program. And the reason it's unique is that it cares for children with developmental disabilities, specifically who have comorbid psychological conditions like anxiety. And a lot of times those behaviors come out as, very forceful, aggressive behavior toward other people or toward their surroundings or toward themselves.
And so developing a program like this requires a certain level of staffing that most places don't have. It requires a certain physical environment that most people have difficulty building. And then it requires a certain level of expertise from the providers that there just aren't a lot of people who specialize in this. And we have a collection of them here at Upstate.
[00:01:48] Host Amber Smith: So what ages, when we talk about children, what ages are we talking about?
[00:01:53] Henry Roane, PhD: It's, five to 17. Generally we see that children under the age of five tend to have behaviors that we can handle on an outpatient basis or maybe toward a little bit milder forms of parent training or things that we might not require an inpatient admission. And then 17 is just the regulatory guidelines. So a child can turn 18 while they're in the program, but they cannot be admitted if they're 18.
[00:02:19] Host Amber Smith: And do they come from the counties surrounding Syracuse?
[00:02:23] Henry Roane, PhD: So right now all of the children are in kind of a two-hour radius of Syracuse. When we opened, we opened with two beds, and then we're slowly ramping up as we hire more staff. And so we anticipate serving children from across New York State. When we developed this program, it was in collaboration with the Office of Mental Health and the Office for Persons with Developmental Disabilities, both of which were based out of Albany, and they were quite clear that they wanted us to serve the entire state.
[00:02:52] Host Amber Smith: Now is the unit part of the hospital?
[00:02:55] Henry Roane, PhD: It operates, I believe, under the hospital's operating certificate, with kind of a mental health coverage umbrella for the services that we provide, as well as the adolescent psychiatry services that are also provided elsewhere in the building.
[00:03:10] Host Amber Smith: I see. And how long might the inpatient stay be?
[00:03:16] Henry Roane, PhD: We target about six weeks. And so it's an intense program, but there is flexibility in that. You know, if it takes seven weeks or five weeks, that's perfectly fine too. But we generally plan, in terms of sort of where we want to be in the progression of therapy, we generally plan that around a six-week window.
[00:03:40] Host Amber Smith: Now before this unit opened, what did families do that needed this care?
[00:03:47] Henry Roane, PhD: Well, a family from Syracuse faced about a five-hour drive to get inpatient care, so that would probably be Baltimore. Or there's a place, I think, in Rhode Island that has a program that does stuff like this. Many of these children, unfortunately end up getting placed out of their homes, and they might go live in a residential placement where there's, say, a special school or something like that. And so, the goal, really, and the best outcomes for the child, in most cases, is to keep them with their family as long as you can and to keep them with their loved ones. And so that's the goal of this program is to sort of return them into those environments.
[00:04:24] Host Amber Smith: And I understand that you use family centered care. Can you explain what that is and what that involves?
[00:04:29] Henry Roane, PhD: Mm-hmm. Yeah, sure. So the admission is broken up into kind of two phases, and families are involved in both.
And even prior to admission, all of the intake information that we get comes from a family. So they fill out this questionnaire, rather lengthy, to say, these are the problems and basically this is how much, how impactful it is on our daily life. And then of course when the child's admitted, we do a full orientation with the family. We have visitations so parents can come and observe the therapy that we're doing, or also just come and spend time with their child.
In terms of the first phase of therapy, that's really driven by our clinical staff and the notion there is to develop a treatment where we start to understand the reason why the child engages in the behavior. So, say, why they engage in an aggressive behavior. And then we start to develop a treatment to teach the child a set of replacement behaviors, but oftentimes communication. So instead of hitting people to get what you want, I teach them to ask to get what they want. It's obviously not quite that simple.
And then we do that with medication adjustments as well, as many of these children are on a range of medications. And so our staff kind of take it on the front end, and then the parents come in and they can observe. They meet with the clinical supervisors, and so we're kind of, at that point, teaching the rationale for the treatments and showing them kind of what we're doing. Then the second component is moving past that teaching and showing to more of a doing phase, and we do that actually a little bit on inpatient, but also a lot on outpatient after discharge where that's when the parents are the ones conducting the therapy. And so we train them just like we would train staff, but instead of training staff to do a whole host of different interventions, we train the parents to do the intervention specifically for their child.
And we do that because they're the ones who are going to be owning it in the real world. And so we've gotta make sure they feel pretty competent to do it.
[00:06:28] Host Amber Smith: Are siblings involved along with the parents?
[00:06:32] Henry Roane, PhD: Absolutely. Siblings are huge part of it. Sometimes we see children who aggress almost exclusively toward their siblings, and so we have to have a plan for that. But sometimes the siblings are part of that caretaker team. So are aunts, uncles, grandparents, whoever else. And so we certainly will train any of those folks who might be helpful for the long-term care of the child.
[00:06:54] Host Amber Smith: So what happens when the child is ready for discharge?
[00:06:59] Henry Roane, PhD: So we determine discharge based on the child's unique goals.
We typically see that children have about three different behaviors that need to be addressed while they're inpatient. And they also need to have their medications adjusted or stabilized, or essentially worked out. And so, in order to do that, when the child's on the inpatient unit, we're collecting a ton of data on the amount of times that they engage in aggressive behavior or how often they communicate to get what they want or what have you -- bowel movements, eating, I mean, we have a ton of data that we collect.
All those things are used to show us how is the medication affecting behavior, how is the other treatment affecting behavior, and we set the treatment targets to where when a child's admitted, we collect what we call baseline data, and that just tells us in the absence of treatment, here's how much this behavior occurs. And so we might find a child who engages in something, hits themselves two times a minute, say. And from that we develop a percent reduction we want to get at, so we want to reduce the behavior by 80 to 90%. And so we continue to modify the treatments until we get to that point, and then we introduce it at multiple places across the building and, so classroom, living room, a bedroom, et cetera.
And then when the child shows mastery of those skills across multiple settings, and with sustained reductions in problem behavior, that's when they've met their discharge goals, with medications being stable as well.
[00:08:31] Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host Amber Smith. I'm talking with Dr. Henry Roane about the new biobehavioral health unit, of which he is the director.
So how would families connect with you? Are they referred by their pediatrician or do they arrive from the emergency department?
[00:08:50] Henry Roane, PhD: Right now they can be referred by pediatricians, psychiatrists, Office of Mental Health, Office of Persons with Developmental Disabilities, community agencies, or they can refer themselves. We are not able to take admissions directly from the emergency room at this time. We don't have a system in place for that. We're designing a complimentary system to do that. But right now, the children are all referred from a variety of sources.
We meet a couple of times a week to review all of the referrals that come in. We have someone who's a nurse navigator who essentially coordinates all of the intake information that's coming in. And then we have a group discussion involving a number of different disciplines to assess whether or not the child's appropriate. And then, if they are, they slot into the schedule in terms of when they would be admitted.
[00:09:42] Host Amber Smith: So what can the family expect if they're recommended for services? Do they wait to hear when they'll be able to get in?
[00:09:51] Henry Roane, PhD: So the first step is that, they'll be referred and we'll send a screener packet, which is just really kind of a short questionnaire to get a sense of, is the child displays the kind of common behaviors and diagnoses that we think we can help. And so, a child who has intellectual disabilities, autism and who is aggressive and has some anxiety, would be an appropriate candidate. Someone who's a youth who had been a violent sex offender would not be appropriate.
And so we have a screener that tells us that. Once you get through that point, we send them a formal packet to complete, an intake packet. And that gets into a much deeper dive in terms of the child's history and medical history and their behavioral concerns, who the care providers are, all of these other things. And then from that we slot them into an admission date.
And so we, as I said, we're growing the program in a stepwise fashion. And so, we opened with two rooms. Next month we're going to go to four rooms and then gradually increase from there. And so children are kind of the combination of the acuity of the case when the referral came in, and then when we have a slot open. And we work with the families for repeated contacts from our nurse navigator to just kind of keep them apprised of that.
[00:11:09] Host Amber Smith: What, if anything, does the child bring with them from home?
[00:11:14] Henry Roane, PhD: They bring all kinds of stuff. We had a child, actually our first patient, broughta bunch of stuffed animal, or stuffed toys that were kind of Christmas themed and favorite blankets. Many of the children do bring in iPads because that's what they communicate on. A lot of the children we see don't speak, or they don't speak very well, and so they use what is called an augmentative communication device, which is often an app on an iPad. And so a lot of children will bring that in.
And then we have, certainly, we're open to them bringing in favorite toys. If they have a Thomas the Tank Engines that they love, they certainly can bring those in. But, we've also done quite a bit of work to figure out what kind of toys to stock the unit with. And so we have a lot of things there as well. We certainly are open them to bring in education materials, family pictures, blankets, all those things.
[00:12:09] Host Amber Smith: What about schooling while they're there? Do they bring studies from their school?
[00:12:14] Henry Roane, PhD: They do.It's technically the responsibility of the school to coordinate that, but we help to facilitate that.
We have a teacher on site, and so that kids get a certain amount of schooling every day. The amount depends on their age. We have two classrooms in the building. And so, one of the classrooms is set up for more group academic instruction, so sort of traditional academics like say, working on language arts, for example.
And we have another classroom that's set up for people whose education goals might be more vocational focused or life skill focused. And so that room looks a little bit less like a traditional classroom but is also an educational space. And then the teacher, along with our staff, are responsible for implementing the education plan every day.
[00:13:04] Host Amber Smith: How much interaction do patients have with other patients?
[00:13:08] Henry Roane, PhD: That's a really good question because we don't, we can't really do group therapy with patients like this because they tend to be aggressive, and they aggress sort of indiscriminately for the most part toward other people. And so we can't really put two patients sitting side by side in, like, a circle, for example, because they'll likely do something to each other. And so we can do group, like, living room activities, for example, or kind of social skills where we have two kids, for example, and then maybe three staff members who are in the room with the child just to sort of make sure they're not getting too close to each other, just so we can make sure they're staying safe.
[00:13:51] Host Amber Smith: And do the parents participate every day? Are they present there at some point every day?
[00:13:57] Henry Roane, PhD: Right now parents are not there every day because of who the patients are and their unique situations and how far away their families live. It's just not practical for them to come every day.
There are visiting hours every day, so that option's there. But at this point we don't mandate daily parent attendance. I think down the road when a child gets closer to discharge, when they're ready to leave the program, then we do have sort of these mandated days where the parents need to come in.
But they certainly can come visit every day. I would expect a very local family would probably do that.
[00:14:34] Host Amber Smith: I know you're expanding, but do you have other plans for the future of this unit?
[00:14:39] Henry Roane, PhD: Oh man. Wow. It's a hard question because it just opened. But, yeah, I always am thinking about, we need to tackle these children who come in through the emergency room and they board on our, at the (Upstate Golisano) children's hospital for many months. That's a problem that we need to tackle.
And, by the way, we do planned admissions for the biobehavioral health unit, and so doing that system doesn't really permit you to just slot a child into an open bed because the system's designed not to have open beds. So I think we need to develop that kind of a program within the hospital. And we've been fortunate to work with our colleagues at University Hospital and in Golisano Children's Hospital to get budget approval for staff hires for that and some equipment as well.
And I think the other thing is you've got to ask yourself, what do we do when people turn 18? And I think that's the next horizon that I would like to get in is, how do we develop adult services, or 18-plus services, because there's a big, big need for that as well.
[00:15:44] Host Amber Smith: Wow. Well thank you so much for making time to tell us about the biobehavioral health unit.
[00:15:49] Henry Roane, PhD: Yeah. Well thank you for having me.
[00:15:51] Host Amber Smith: My guest has been Dr. Henry Roane, the director of Upstate's new biobehavioral health unit. He's also a professor of pediatrics and the executive director of the Golisano Center for Special Needs at Upstate. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe, with sound engineering by Bill Broeckel and graphic design by Dan Cameron. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please invite a friend to listen. You can also rate and review "The Informed Patient" podcast on Spotify, Apple podcasts, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.