Golisano Center for Special Needs streamlines care for kids with intellectual, developmental disabilities
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. The Golisano Center for Special Needs opened in 2021 to provide comprehensive, coordinated, and scientifically based medical and behavioral care for children and adolescents with many types of intellectual and developmental disabilities. Here with me to talk about how the center is operating is Dr. Henry "Hank" Roane, the executive director. Dr. Roane is a professor of pediatrics and the division chief for the Center for Behavior, Development and Genetics at Upstate. Welcome back to " Informed Patient," Dr. Roane.
Henry Roane, PhD: Thanks for having me.
Host Amber Smith: I know that you, for a long time have wanted to combine Upstate's services for children with intellectual and developmental disabilities under one umbrella. Does this center accomplish that goal?
Henry Roane, PhD: Yeah. For many years, parents had to take their children to multiple sites to see multiple providers, and often communication across those sites was really poor. So when we set out to establish a vision for the program, we really started with a series of focus groups with family members of the children with intellectual and developmental disabilities. And the No. 1 thing they expressed as a need was a one-stop shop where all their doctors and all their services were in one place. And that's what we've done for intellectual and developmental disabilities, now the vast majority of all their medical and behavioral health care under one roof.
Host Amber Smith: That's great. It streamlines it, it sounds like.
Henry Roane, PhD: Absolutely.
What age are the children the center serves, and what diagnoses might they have?
We typically serve children from ages two to 18. The majority of children, about 87%, have a diagnosis of autism spectrum disorder, though that's not a prerequisite to get into the program. We see many children for diagnostic questions. Some of them might have ADHD or other conditions. We also see a number of children with genetic conditions like Down syndrome, physical disabilities like cerebral palsy, and a range of other condition.
Host Amber Smith: Do they arrive with a diagnosis already in place, or do they come to the center in search of a diagnosis?
Henry Roane, PhD: Both really. One of the branches of our center is focused on diagnostic services for children, and this program is staffed by clinical psychologists and a developmental pediatrician, Dr. Lou Pellegrino, speech and occupational therapists and social workers. And this team really reviews referrals that come in weekly, and they determine really what the best course of assessment services for the child. And then they identify the appropriate diagnostic services that the child needs.
On the other hand, we have branches of our clinical service that are all based around treatment. And this includes ongoing medical management, home-based early intervention and clinic-based behavioral treatment. So for the treatment services, children typically come in already having a diagnosis.
Host Amber Smith: So from a family's point of view, what might their experience be like today compared with what it would have been like before the center existed?
Henry Roane, PhD: I hope it's better. Before, they had to go to a lot of different places, be on different wait lists and had to wait for one provider to communicate with another provider or the providers to read each other's reports and then to coordinate care. Now they come to one place and we coordinate the care for them. And so, where they go to get their initial diagnosis is where they come back for therapy, and it's the same front desk people. So they get to know the child. They get to know the family. And I think that coordination of care is really important. Having all the providers in the same space is really helpful for communication.
And then the clinics are essentially able to feed into one another. And so if we have a diagnostic assessment that says the child has problems with tantrum behavior, we can get that child into our behavior clinic. And while the child's in the behavioral clinic, if the parent expresses a need for medication management, we can get the child back into a developmental pediatrician. So having all of those services and being able to flow together really helps to decrease delays in accessing care, which is really important for this population.
Host Amber Smith: What is the typical wait time to get, like for a new appointment for a new patient?
Henry Roane, PhD: It's about 60 days right now, which is still a little bit longer than we'd like it to be. But that's an improvement relative to where we started, which was about 200 days when we first set out on this project. And one of our big goals with the Golisano Center for Special Needs is to continue to drive down wait times. In the next four to six weeks, we'll be bringing in another pediatrician and two more licensed psychologists. And these are folks who are going to be involved in the diagnostic process and in follow-up care. So adding of these other providers really will help us to decrease wait times and get more children into care more quickly.
Host Amber Smith: Do the children that come to the center, do they stay with you up until adulthood?
Henry Roane, PhD: Not typically. You know, the goal for a child is really to develop treatment procedures when they're young, because that's when the developmental processes are most malleable. And that's also when learning is the easiest time to occur. And what we like to do is try to treat the child intensively for a maybe six months period, multiple hours a day, and then hand over the care to a family practitioner or to state services. So we work very closely with New York State Office for People with Developmental Disabilities to bring a child's treatment from our clinic, integrated into the home, and then turn those services over and move to more of a follow-up care model after that.
Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith talking with Dr. Henry Roane, the executive director of the Golisano Center for Special Needs. Can you tell us about the feeding disorders clinic? I understand you're able to see more patients with feeding disorders now.
Henry Roane, PhD: In our feeding disorders clinic, we see many children both with, and without autism who simply do not eat enough food to sustain their growth or health. So these are children who come into our clinic, they've received a multidisciplinary evaluation with a speech therapist and with gastroenterology, and that really ensures that they're good to progress with our feeding program. And then once they're in the program, we really focus on things like structuring the meal, repeating and structuring the way that we present foods, what type of texture the food needs to be, setting expectations for the child and for the family. And we have a really heavy focus on parent training. So we essentially build out a mealtime routine for the child in terms of here's how you present the foods. Here's what foods to present. Here's how you deliver rewards. And then we train the parents to do that. To your point, yeah, due to the funds that we receive from Tom Golisano and from the Upstate Foundation, we've essentially doubled the size of our feeding program. And in addition to that, we've hired a new provider who's going to start in February, and we anticipate that we'll be able to expand the clinic further this spring.
Host Amber Smith: Why is language skills development, part of the feeding disorders clinic?
Henry Roane, PhD: Well, you know, language is just such a huge thing for any child with a developmental disorder and it's deficits in language and communication are one of the core symptoms of autism spectrum disorder. So for any child that we see, you can often view their behavior as being a form of communication. And so, for example, a child may cry or get upset or tantrum because they don't necessarily know the words or know how to appropriately communicate their wants and needs. So when we develop treatments, we often target communication as a form of replacement behavior under the notion that teaching language can really help us to open doors for treatment and further skill development.
Host Amber Smith: OK, interesting. Let me shift gears a little bit. I know you have an equipment loan closet. How does that work? And what kinds of equipment are we talking about?
Henry Roane, PhD: Yeah, this is a, it's a really exciting project run by Dr. Nienke Dosa, who's one of the Center's developmental pediatricians and her team. Dr. Dosa sees many children with physical disabilities and is really focused on physical fitness among that population. And so, Dr. Dosa and her team, as well as the Golisano Center, have started partnering with Access CNY to develop this loan closet for equipment used by children who have physical disabilities. Oftentimes this equipment is very expensive, and having access to a loan closet, it essentially works for a family to almost, like, test drive equipment. And so it helps the family to make sure that the equipment that they're using works well for them. That can include things like standers to help children stand up right, pieces of equipment that facilitate gross motor movement, like walking, as well as adaptive physical activity devices. We've been real fortunate to work with places like the Boeheim Foundation to get funding for promoting a range of fitness activities for children with physical disabilities. And the loan closet really feeds into that and allows us to bring more children in to get access to physical activity.
Host Amber Smith: So a family might use a piece of equipment for a period of time and then return it?
Henry Roane, PhD: Exactly. Yeah.
Host Amber Smith: OK. Now, one aspect of the center's operation that I know is important to you is helping to train the next generation of providers like yourself. Can you talk about how that's accomplished?
Henry Roane, PhD: Yeah, absolutely. We've worked really closely with Upstate's College of Health Professions and have developed a master's program training students in applied behavior analysis. Applied behavior analysis is a form of therapy that's the primary evidence-based practice for treating symptoms of autism spectrum disorders. And we have a pretty unique program in that our classes are taught by providers who work in our clinics, and our students do all of their field work and the clinics. So, if you think about it, they can go to class, learn about a various treatment approach in the classroom, and then the next day go into a physical environment where they can literally practice the skills that they learned the night before. This is a really unique model. There's very, very few places around the country that have that kind of embedded masters program that's so interlaced with the treatment program. And it really helps us to further build capacity. You know, we're interested in increasing the workforce of providers in the field so that more children can get helped and they can get helped in more diverse settings or new clinics or other areas of the community where it's harder for families to travel to.
Host Amber Smith: Well, that's good to know. Now, I know the center is also doing research that's funded by the National Institutes of Health. Can you tell us about some of the projects you're focused on?
Henry Roane, PhD: Sure. Yeah. Dr. Nicole DeRosa is leading a funded project right now from the National Institute of Health. And she's looking at teaching broad communication repertoires to children with autism who also display challenging behavior. So one of the core symptoms of autism is that children have behavioral rigidity and that they tend to be inflexible in how they respond. So for example, they might repeat the same phrase over and over. So what Dr. DeRosa's work is looking at is to teach children to vary up their responding so that they have a broader communication repertoire. And that ultimately increases socialization that goes along with one of the deficits that we see with children with autism. We also have other lines of research going on related to identifying best practices for how to treat challenging behavior, working with multiple institutions across the United States to do that work. And also how to prevent treatments from essentially falling apart or how to prevent children from relapsing once they leave the clinic and go back into the home, because that can be, obviously, a source of high stress for parents. We have some really exciting lines of research. We're very lucky to have strong research team led by Dr. Andy Craig, and the department of pediatrics has been extremely supportive of our research work.
Host Amber Smith: It sounds like it. I want to thank you so much for making time for this interview.
Henry Roane, PhD: Oh yeah. Thank you for having me.
Host Amber Smith: My guest has been Dr. Henry Roane. He's a professor of pediatrics at Upstate and the executive director of the Golisano Center for Special Needs. The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York.
I'm your host, Amber Smith, thanking you for listening.