It is essential to support children with developmental differences at an early age, but they often miss the opportunity for early intervention services provided under federal law. Pediatricians Toni Whitaker, MD, and Jennifer Poon, MD, join us to increase awareness of early intervention services for children ages 3-5 years. They provide insights on the work they’re doing with pediatric peer providers to equip them with skills to facilitate equitable access to these services.
Guests:
Toni Whitaker, MD, Professor and Chief of Developmental Pediatrics, The University of Tennessee Health Science Center, Le Bonheur Children’s Hospital
Jennifer Poon, MD, Professor and Division Chief for Developmental-Behavioral Pediatrics, Medical College of Georgia, Augusta University
Host/Producer: Carol Vassar
TRANSCRIPT
Announcer:
Welcome to Well Beyond Medicine, the world’s top-ranked children’s health podcast produced by Nemours Children’s Health. Subscribe on any platform at nemourswellbeyond.org, or find us on YouTube.
Carol Vassar, podcast host/producer:
Each week we’ll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar. And now that you’re here, let’s go.
Music:
Let’s go. Oh, oh. Well beyond medicine.
Carol Vassar, podcast host/producer:
If you’re a pediatric healthcare provider, a parent, or a grandparent, you’re probably aware of birth to three programs in your area that provide early intervention services and developmental evaluations to infants and toddlers with developmental delays. But what about services for these same children between the age of three and the time they start kindergarten, usually around five? The good news is these continued services exist. The bad news is not everyone is aware of them which can lead to gaps in services for children at a very critical point in their lives.
Here to talk about how they’re working to fill that knowledge gap by raising awareness among their pediatric provider peers are Dr. Toni Whitaker, Professor and Division Chief of Developmental Pediatrics at the University of Tennessee Health Science Center, Le Bonheur Children’s Hospital in Memphis, and Dr. Jennifer Poon, Professor of Pediatrics and Division Chief for Developmental-Behavioral Pediatrics at the Medical College of Georgia Augusta University. Here’s Dr. Toni Whitaker, who explains the issue in more depth.
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
Early intervention we usually think of as birth to three, and then three- to five-year-olds have a separate set of services they may get through public school. They may have other options, but our mission today with our topic is to talk about how there can be a gap between early intervention services that are intended for infants and toddlers before the time that children get to typical school age, which people tend to think of as kindergarten age. So we’ve got a three to five year age gap where a lot of people don’t know quite what to do with the kids to get them the services they need, whether they have a defined developmental disability, delay or disability, or they’re at risk for some delay or disability. A lot of folks need to have more information on those options in that age range.
Carol Vassar, podcast host/producer:
Would you say, Dr. Poon, there’s a good uptake on people taking services for kids in that birth to three range, and it drops off between three and five?
Dr. Jennifer Poon, Medical College of Georgia:
So what we know is that early intervention services often the referrals come from pediatricians, parents, community members, but for school, many people don’t know as much about these school services. If a child is already enrolled in early intervention, their early intervention service coordinators are supposed to help with the transition to see if they’re eligible for services through the public school.
Carol Vassar, podcast host/producer:
So the services are out there. Is it an issue of awareness by pediatricians, by the schools, by parents themselves?
Dr. Jennifer Poon, Medical College of Georgia:
That’s what we often think. I often hear from general pediatricians, “What’s early intervention at age four or five or six?” And so this again, is just even educating what is early intervention from 0 to 36 months of age, and then what happens after that. And so what our hope is to transition kids once they’re at the age to age out of early intervention services, but also to know if you’re not in existing early intervention services, there’s opportunity to request an evaluation through the school system.
Carol Vassar, podcast host/producer:
Are these federal services or federally supported services?
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
In most cases, yes. The formulas for who pays for what and how it’s delivered can be a little bit complicated, but federal law covers the age range we’re talking about as well as the younger children in birth-to 36-month range. It is complicated sometimes for pediatricians to figure out what their local services are about, but it’s even more complicated when the families need to figure those things out, so I hope we can help spread the word a little bit on how we, as trusted messengers, the pediatricians and other clinicians, can help know enough to get families pointed in the right direction. We would not expect that every pediatrician would be an absolute expert in federal education law. It is complicated. It can be tough, but someone armed with enough information to get families pointed in the best direction for their child’s individual needs can really, really help the families get to where they need to go, whether it’s public school or another set of services in a way that even strengthens that bond between the pediatrician and the family because it’s supportive on all sides.
Carol Vassar, podcast host/producer:
It sounds like a pediatrician or pediatricians across the nation can really be linchpins to helping families get these services. Dr. Poon, talk a little bit about that.
Dr. Jennifer Poon, Medical College of Georgia:
We know that pediatricians are tasked with seeing children on a regular basis, and as such, pediatricians know about surveillance and screening, so that’s a rich opportunity to help identify when there are concerns and seeing if those concerns are valid, and then screening to see if they should be referred to these services.
Carol Vassar, podcast host/producer:
Are there specific skills that pediatricians need to make those kinds of recommendations?
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
I think most pediatricians have these skills already in them and recognizing the systems in which they can put the things they already know how to do is a big deal for the families. Indeed, they may need to learn a few more specifics to be sure they’re giving good, current information, that they’re not leading families down a wrong path, that we’re giving information that gets families where they need to be, but I don’t think it has to be considered as something brand new. These are skills that pediatricians would have learned from way back, and maybe they need a few additional bits of info, but the conversation that you have around development, the inquiring about concerns the family may have, inserting screening into your office procedures as Dr. Poon noted, screening is very important for development, those are already there, but being aware of what you’re doing and understanding your role and connecting people to those services beyond.
I think one other step that sometimes is difficult in a very busy practice is ensuring you can close the loop. So once a referral is made, or a recommendation is made, invite the family back sooner or ask them to call you back or connect them with your referral staff, something in your system that can work for the family to have them realize they don’t just have to go off into the land of I don’t know what to do next. They don’t know what they don’t know often, and so they don’t know to ask all the questions. And if you have a system where you can have a way for them to close the loop and have them encouraged to contact your office back, a system in place could really, really help the families know then what to do if something happens that’s not expected.
Carol Vassar, podcast host/producer:
Let’s talk a little bit about the role of the family in all of this. This can be overwhelming for a family who has perhaps never experienced or known that their child has a developmental delay. It’s discovered sometime before they hit kindergarten. How can the pediatrician begin that conversation and continue that conversation? And as you pointed out, Dr. Whitaker, close the loop on that conversation. Dr. Poon.
Dr. Jennifer Poon, Medical College of Georgia:
When we talk about developmental surveillance, surveillance should be really done at every well-child visit. That’s a great opportunity for pediatricians to ask parents, “Do you have any concerns about your child’s development?” But on top of that, part of what pediatricians are also equipped to do is to ask specifically about milestones and observe the child in the setting to see what milestones they might see as well as think about their risk factors and protective factors regarding their development. All that together are parts of surveillance, and by that relationship the pediatrician has with the parent, they can determine if they feel like further screening or further evaluation are future steps.
Carol Vassar, podcast host/producer:
Are there common barriers that families face when they are trying to access services? Once the pediatrician makes that recommendation, sometimes it’s upon the family to actually move forward with it. Are there certain barriers, perhaps transportation, perhaps cost? Dr. Whitaker?
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
There certainly are barriers. The barriers can be numerous for one family or one for an individual family, and it’s so difficult to predict. I’d like to continue to encourage pediatricians or have someone in the office, the office staff, be available for those questions because it’s very hard to anticipate. But with some anticipatory guidance for the common ones, such as, “You will need to complete paperwork. You will need to request the services. You may need to sign this. We need an information release so we can share information back and forth.” If we know enough about the services in our own area, we can say, “This is no cost.” Or we might need to say, “This is at some cost.” And we would want those to be as accurate as possible because every time a family hits something that, “Oh, it’s not quite like you said, or it’s not quite like the person from school said,” it can feel like a very big thing.
And so accuracy is good. It doesn’t have to be a million things, but to try to give people enough information to know what they probably will expect. But then where some of those spots are that are often issues, cost can certainly be a concern. But the federal law that we talked about providing for these services for young children really should allow for free services for most who have real developmental delays and disabilities. So knowing that they’re there may get someone to the next step of, I’ll try a little harder, I’ll call again, or I’ll try a different approach. And understanding those systems is very important.
Carol Vassar, podcast host/producer:
Are there any barriers around cultural differences or cultural perceptions of disability? Does that impact the likelihood that families, once they are recommended for services, will actually seek those services?
Dr. Jennifer Poon, Medical College of Georgia:
I think that every culture and every family has different approaches to how they see child development. And I think, as clinicians, we really need to open those lines of conversation with the families and meet them where they’re at. And sometimes that just involves these open-ended questions about what are their thoughts about their child, what’s their relationship with their child like acknowledging that maybe some of this might be angst-provoking to the family and meeting the family at where they’re at. And then from that standpoint, I think what pediatricians are really great at is also thinking about what are the strengths of a child and their family and truly leveraging those in the conversations and helping them remember what’s strong and what’s going well in addition to maybe some of the concerns the family might bring up or some of the concerns that you might.
Carol Vassar, podcast host/producer:
Dr. Whitaker.
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
And Dr. Poon, you make such a good point about that relationship. You’ve also mentioned earlier about having these conversations about development and strengths and concerns from early on. If this is a part of what we talk to families about every well visit, families will know more what to expect. They’ll be better prepared to help us understand how the child is doing on the next visit because they’ve been prepared to know that we care about it, understanding what milestones to look for. Understanding what sorts of things to think about in advance of the next visit will make for a better visit next time may save a little time even to have the family already understand it’s important that we talk about it. It’s the natural thing we’re going to do, and we’re going to do it every time.
Carol Vassar, podcast host/producer:
Now, correct me if I’m wrong, all of this intervention, this early intervention, is meant to get the child to kindergarten prepared and ready. How do you make that transition and how can pediatricians help with that transition from the preschool years into kindergarten? Dr. Poon?
Dr. Jennifer Poon, Medical College of Georgia:
Yes. So I think if a child is already receiving services through the school, the pediatrician can follow up with the family and get updates from the family on periodic cases of how they’re doing with the school, are they still receiving services? Are they requiring for their help? The other option is if a child isn’t receiving services, the pediatrician can continue to encourage the family to periodically check back in with the school to see if they’re eligible for updated evaluation if need be.
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
And a pediatrician doesn’t have to know every single nuance of the education law, but it really is feasible to know enough to point families in a really good direction for them. And as Dr. Poon mentioned, the conversations we know that pediatricians are already having, if you just understand that what you’re doing is helping prepare that family to understand a system where their child is going to get the services and supports they need, is a really big deal, and it’s going to be a good thing for you as well as for the family that you’ve helped.
Carol Vassar, podcast host/producer:
Are there occasionally issues associated with stigma with families who have been recommended to get early intervention? Have you run across that at all?
Dr. Jennifer Poon, Medical College of Georgia:
There are. Families, I think, are sometimes nervous or scared, whether it’s about if it’s early intervention, potentially having people in their home, if it’s special education services, perhaps sending their child who might not have verbal communication to school with people there that they don’t know. I think one of the things that pediatricians can do is listen to the parent when they bring up these concerns and share with them what they’ve known from their experiences with other patients, and just provide it as an open-ended conversation.
Carol Vassar, podcast host/producer:
Talk a little bit about any firsthand experiences you might have with families for whom intervention has been recommended by the pediatrician and access through the school system that have ended up being success stories. Do you have any examples of that? Dr. Whitaker?
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
I really do see a lot of families who are very pleased. As you said that, I wonder, can I narrow it down to one? Because I do get a lot of really great reports from families who have appreciated being in a place where the system is helping them. Not every system does as good a job. I’ve certainly also had interactions with families who’ve run into those barriers we talked about, and sometimes they are things we can help with, and sometimes it is a larger issue, but knowing sort of backup plans and other options, I’d like for folks to think it’s not always just one option. We’re talking a lot about school services and very specific paths that families may go through. Depending on the issues of the child, there may be backup plans, so a medical order for therapy, for example, instead of receiving physical therapy from school that might be appropriate for one child where another child might need to be enrolled in school. And so it is something to think about what fits folks best.
I do think, as Dr. Poon mentioned about listening to families, the best outcomes that I’ve seen that families have really talked about it feels like they felt heard, that their concerns were heard about their child, and whatever they had to do after that, as long as they felt a part of that, it really mattered to them, and it really felt good for everybody.
Carol Vassar, podcast host/producer:
Dr. Poon, you’re nodding your head. Anything else to say about that?
Dr. Jennifer Poon, Medical College of Georgia:
One thing I think about is we, as pediatricians, should not work in silos, but we really should be reaching out to schools and community agencies and early intervention. The best way to do that is picking up the phone and making sure you have permission, whether that’s a release of information form from the school to the school, but we don’t have to do this alone. We should really be working together as a team because, ideally, everyone is pro-child and team-child, and we really want to put our heads together and see that child in every aspect of our lives.
Dr. Toni Whitaker, Le Bonheur Children’s Hospital:
These are the sorts of things that I do hear from pediatricians that I work in a specialty field, so I often see families that have indeed had interactions with their pediatricians. We get questions from pediatricians, “What do I do?” And there’s not always a perfect quick, easy answer, but having a sense of those systems around which you can try to get families slotted into the right spot, you don’t have to do it absolutely perfectly every time, but having a strategy to ask the right questions from the family and from the school and our partners and not in silos, it helps us learn more every time.
Every time I see a child, I may learn a little bit more. Or tell me about how Headstart worked for you or tell me about this, how you interacted with the school system, how’d that go? Every one of those little bits of interactions back helps me know a little bit more for the next family, so it helps who I have in front of me, but it also helps me understand my system a little better. I don’t have to study the system. I don’t have to go home and learn all about it. I can gather that information as I go and then use those examples to inform my next encounter.
Carol Vassar, podcast host/producer:
Dr. Toni Whitaker is a Professor and Division Chief of Developmental Pediatrics at the University of Tennessee Health Science Center, Le Bonheur Children’s Hospital, Memphis. We also heard from Dr. Jennifer Poon, Professor of Pediatrics and Division Chief for Developmental Behavioral Pediatrics at the Medical College of Georgia, Augusta University.
Music:
Well beyond medicine.
Carol Vassar, podcast host/producer:
Thanks to Dr. Whitaker and Dr. Poon for sharing their expertise on this episode of the podcast. And thanks to you for listening.
People, programs, and partnerships addressing whole child health that’s what we talk about on the Nemours Well Beyond Medicine podcast. What ideas do you have that fit that definition and might be a good match for us to include on an upcoming episode? Send your ideas to [email protected] or visit our website, nemourswellbeyond.org, to leave us a voicemail. That’s our podcast central for all past episodes and the place where you can subscribe to the podcast, leave a review, and now sign up for our brand new monthly newsletter.
Once again, that’s nemourswellbeyond.org. Don’t forget: the Well Beyond Medicine podcast is also available on your favorite podcast app and on the Nemours YouTube channel.
Our production team for this episode includes Cheryl Munn, Susan Masucci, Lauren Teta, and Steve Savino. Join us next time as we visit a neighborhood health care clinic in Wilmington, Delaware, that is a neighborhood fixture for more than just medical care. I’m Carol Vassar. Until then, remember, we can change children’s health for good, well beyond medicine.
I’m Carol Vassar. Until then, remember, we can change children’s health for good, well beyond medicine.
Music:
Let’s go, oh, oh. Well beyond medicine.
