Transcription:

Maggie McKay (Host): the centers for disease control and prevention recently revised its developmental milestone checklist for infants and young children, which caused quite the buzz on social media. It was the first time in 20 years, that list had been edited.

The CDC and American Academy of Pediatrics said the goal was to help parents clearly identify potential developmental delays or disabilities. Social media speculation circulated saying that the COVID-19 pandemic and the effects to children were the reason for the changes.

Here to explain further and provide facts on the subject is Le Bonheur Children's Hospital Division Chief of Developmental Pediatrics, and the CDC's Act Early Ambassador to Tennessee, Dr. Toni Whitaker. This is the Peds Pod by Le Bonheur Children's Hospital. I'm Maggie McKay. Dr. Whitaker, thank you so much for being here to talk about what parents need to know about the CDC's updated Act Early Developmental Milestones for children.

Toni Whitaker, MD (Guest): Thank you, Maggie. It's a pleasure to be here with you today.

Host: I know you're busy, so we really appreciate your time. And like we said, speculation was circulating on social media, so we're so happy to get the facts from you today. So just to begin, what is your role as the Tennessee Ambassador for the CDC?

Dr. Whitaker: Well I'll start by reminding us that development delays and disabilities are actually very common. An estimated one in six children has a developmental disability and about one in 44 is estimated to be on the autism spectrum. And though those numbers are pretty important, unfortunately, many children with developmental delays and disabilities aren't identified early.

And if they're not identified, they don't receive the services they need during early childhood. That early childhood period is the time when the interventions that we want to get in place really may be the most beneficial. So for the past 15 years or so, the CDC's Learn the Signs Act Early program has provided free resources for families and for professionals to use to support that identification process early on. We want to identify children with delays and disabilities so they can get the support they need.

As the Ambassador to Tennessee for the program I serve as the point of contact between the national program and our local and state initiatives. And we want to support that early identification process, both for the families as well as for the professionals that serve these kids. I've work with a variety of those local, state, national partners to provide free resources and to give training, especially on developmental monitoring and screening.

And with screening, we can aim to get the right developmental behavioral interventions to those kids who need them. And then for this project, I've had the opportunity to work over the past few years as part of the team from joint CDC and American Academy of Pediatrics Group, that included experts from several fields and we proceeded to revise those Act Early milestones and some of the other free program materials.

Host: That's great. So can you please explain the reasoning and the revisions of the CDC's developmental milestone checklist?

Dr. Whitaker: Sure Maggie. The Act Early program materials have always included developmental milestone checklist, and these were meant to be family friendly and use this communication tools to promote that developmental monitoring and encourage conversations about child development so that families would know that it's appropriate and encouraged to discuss with their child's pediatrician or other health care provider or early childhood educator when they had concerns or even when they wanted to celebrate when things were going really well.

So milestones are skills that children reach, such as learning to walk or say a first word. And we usually group those into categories. In the case of the Act Early Program these are grouped into four developmental domains, that are social and emotional milestones, language and communication milestones, cognitive milestones. And that includes things like learning, thinking and problem-solving, and then finally movement or physical development milestones. And each Act Early checklist at various ages through early childhood includes milestones at all those developmental domains so that we can be sure a child has gaining skills at all areas.

So revisions were felt to be needed after the CDC's Act Early program received feedback from families over those 15 years, that we could pay better attention to some areas. The program wanted to clarify that specific milestone descriptions for families we're using plain language that everybody could understand, it would be easy to understand what families were looking for. The descriptions would make sense. The program wanted to clarify when most children reached select milestones and this was defined as 75% or more of children. And finally wanted to clarify when to Act Early, if there were concerns without causing unnecessary worry for parents. And I'll explain this last two points a little bit more.

When milestones are targeted to average ages, rather than to when most children achieve them, it can be difficult, especially for families to know when to be concerned if the child's not meeting a milestone. At an average age milestone, about half of the children would be expected to have achieved the skill, whereas the other half would not. It could be appropriate in such a case to wait and see if the child would gain the skill over some time. But such waiting can cause delays in getting appropriate intervention services.

So by contrast, it was felt that setting milestones at a level at which most children would have achieved them should make it more clear for parents when to be concerned and should help reduce the wait and see approach. And again, it's very important to think about the parents' amount of worry at an average age for milestones.

It could cause that unnecessary worry for parents if they weren't sure when to be concerned. So as the checklists were being revised for these specific milestones, it was also a need to add a couple more checklists to ensure that there were checklists for every one of the recommended well-child checkups between two months and five years.

And as the process rolled out, we wanted to be sure that providers, healthcare providers and others were aware of these. The revision process was evidence-informed using data from international sources and many common parenting and professional resources.

The original Act Early milestones served as the foundation for the revised milestones. And those that had good evidence, were retained. Those that didn't have good evidence were eliminated and some new ones were included as well. It's really important to mention that not all possible milestones, that could be observed for are included on the checklist.

It's also important to note that we found that some types of milestones, the social, emotional and cognitive milestones in particular, were difficult to find in the data. And it was not always clear what resources were used to get these milestones in the first place and whether they were based on average age, or ages that most children would achieve them. Even when published milestones were available, they didn't always fit well to our target ages for those recommended check-ups visits with the child's doctor.

So we see this work as one part of the bigger picture for ensuring we have good information on child development, that we use that information to ensure that we're providing what kids and families really need, whether for celebration of things going well or extra help, when there are concerns. As with everything in healthcare, continued research and ongoing improvement in our processes are important.

Act Early program is continuing to take feedback on these materials and plans to continue to work to improve them over time.

Host: So as we mentioned earlier about social media, there's a lot of speculation circulating. Was the COVID-19 pandemic, a driving force to these changes and has the pandemic affected children developmentally?

Dr. Whitaker: Maggie, I'm so glad we're able to talk about this. I'm glad you asked. The COVID pandemic was definitely not a driving factor to the changes in the Act Early milestones. In fact, the research and publication process took several years. The research portion itself was completed in 2019, so well ahead of the pandemic, and it does take some time for publications and reviews to be completed so that the results and the new checklist weren't published until February of 2022.

In terms of the effects of the pandemic on child development, many professionals in health, mental health and education fields have indeed been very concerned that children of all ages have missed opportunities to engage in many of the ways to which we've been accustomed. Some families were able to adapt and modify so that their children continued to do well developmentally during the pandemic.

But for many, and this is what worried us, is that limitation in services, even basic services like going to school or preschool, did create significant challenges for learning. So these are great questions, but we really don't have all the answers yet about what effects it has had on all children.

Some folks have wondered about specific questions too, the effects of masking on language development, for example. Many factors come into play for a question like this. On the one hand masking has helped prevent serious illness, but on the other hand, we need to remember to pay attention to the ways kids really learn a lot of the nuances about language and communication, such as facial expressions and speaking clearly even if masks are needed.

So it is a good question. These and others, but whether about a specific question or about those broader questions, about how and to what degree the pandemic has affected children's development. The important thing now is that we pay attention to concerns and work together to consider solutions.

Host: How did the changes on the list help parents identify developmental delays or disabilities?

Dr. Whitaker: Well now, as much or more than ever, it's important to be sure we are paying attention to child development. This includes helping parents know how to monitor their own child's developmental progress, providing them with information on what they can do to support their child's continued development and supporting good communication between the parents and their health and early childhood professionals.

As I've mentioned, several times, discussions of concerns are very important and when families have lots of great information, they will be able to both start and continue those discussions with their child's professionals. As a reminder, since the milestones are listed at ages which most children are expected to have achieved the milestone, missing any milestone really should at minimum, prompt a discussion between the parent and provider and likely should include next specific steps, such as a formal developmental screening with a validated screening tool.

Universal developmental screening is recommended by the American Academy of Pediatrics at specific ages in early childhood. And these are at nine, 18 and 30 months for general developmental screening and at 18 and 24 months for autism screening. And it's also recommended to have a formal developmental screening anytime a concern is identified. These checklist that includes milestones are not screening tools. They are meant to help families understand about child development and help prompt those discussions. But if there is an actual concern, either identified by reviewing a checklist or otherwise present from the parent or the provider, formal developmental screening is recommended.

So these revised milestone checklists are really just one component of that overall developmental monitoring. Just a few other things that the checklist do include, again, meant to encourage conversations and help families understand are some open-ended questions so that families can think about other concerns they may have that aren't just about milestones. The checklists include reminders of when that universal screening is due and the messaging on all the checklist encourages families to seek help and ask about additional screening or other early intervention information or tips and activities. And in fact, quite a number of tips and activities are included in the checklists for developmental promotion and to support good early relationships and positive parenting.

Host: We touched on this a little bit earlier, but can you please tell us a little bit more about when parents should reach out to their provider if they have concerns?

Dr. Whitaker: I'm always happy to say that many times parents should reach out anytime they have a concern about their child's development. Again, regardless of whether child is meeting milestones, such as those listed on these checklists or from other resources, parents usually have a really good sense of when their children are on track or not. And education is really about the power to know what to do next. So checklists can help, other resources can help, but parents should discuss their concerns at any time, whether it's a well-child visit that is scheduled for a developmental screening or not.

Please mention your concerns. Again, often an appropriate next step is to administer a formal developmental screening tool. And of course good follow-up after any of these discussions, to be sure all questions are answered or plans for monitoring or interventions are in place is a really good idea.

Host: And how do early intervention programs, including those at Le Bonheur help?

Dr. Whitaker: As I mentioned, developmental delays and disabilities are common, and we have a lot of evidence that identifying concerns and intervening during early childhood is important. A child's brain is growing so rapidly during the early years. And future learning really builds on what it's learned during those early years.

The children with known developmental delays, even the risks or developmental delays may be eligible for statewide early developmental intervention program. Usually those are for kids under three or after three to five years, a child might be eligible for public school, preschool or Headstart program, and sometimes services provided through a medical center, or clinic, are most important. Some of the types of early interventions commonly used, include speech language therapy, occupational therapy, physical therapy, behavior therapy, work with a general developmental specialist, among others.

So it really matters that we connect an individual child with the service that he or she needs the most. Le Bonheur has a leading role in our community in providing such services, both at multiple locations and in partnership with our free statewide early intervention program, which is called Tennessee Early Intervention System, or T E I S.

Host: And the big question I'm sure on a lot of parents' minds, what can parents do to support their children's development?

Dr. Whitaker: Again, I encourage parents to talk to their child's health provider about any concerns and ask about formal developmental screening and specific services if needed. And while I've talked a lot about the Act Early program resources today, I'm going to say that it's also okay to use other resources. There are certainly other good ones.

I encourage families and professionals to use the resources that work for them. Ones that you use are the ones that are going to help you the most. A child's primary care clinician may recommend resources. It's great for parents to ask about this. Discussions about child development are very important. It helps everyone understand better. So know as much as you can about the information you do decide to use. But pay attention to child development by some means since that early development sets the foundation for future learning. For access to the Act Early program with the free materials online, go to www.cdc.gov/actearly. And there is also an easy to use free mobile app with the similar information that's called the Milestone Tracker and it's available from the iOS app store or Google Play.

The Tennessee early intervention website is at www.tn.gov. And from there search T E I S.

Host: Dr. Whitaker, you have certainly given us so much useful information and I'm sure parents are so grateful to have it because when it comes to your children, as we know, we can't do enough to help them, especially in their development. So thank you for sharing your expertise with us. We appreciate your time.

Dr. Whitaker: Thank you Maggie. Glad to talk to you today.

Maggie McKay (Host): To learn more, please visit LeBonheur.org/podcasts, and be sure to subscribe to the Peds Pod on Apple podcasts, Google podcasts, or wherever you listen to your podcasts. You can also check out the LeBonheur.org/podcasts to view our full podcast library. And if you found this podcast helpful, please share it on your social channels.

This is the Peds Pod by Le Bonheur Children's Hospital. Thank you for listening.