There are few things more important to your child’s well-being than finding the right care providers, physicians, and therapists — but it can also be an ongoing (and often overwhelming) challenge. This guide will help you navigate the complex journey of building a great care team and getting the right support to meet your child’s needs.
With so many different medical specialties, it can be difficult to know which kinds of physicians can best help your child. Our medical glossary provides an overview of the primary medical specialties that serve children with disabilities, with a description of the services they typically offer.
Some of the most important people in your child’s early life are the therapists who will help them work toward building the emotional, social, adaptive, and physical skills they’ll need to participate in their school and community. To help you learn about what therapies are available and how they might benefit your child, we’ve created a therapy glossary that outlines each therapy type, as well as the various subtypes within each therapy, to help you start planning for and prioritizing the care your child needs.
Developmental pediatricians treat children with developmental disabilities and other developmental concerns. They can also play a central role in coordinating care.
Dr. Marielly, pediatric OT, tells us three ways a developmental pediatrician can be a great care coordinator:
First, by running tests to make sure that medical-biological needs are met: “That's super important, to have those medical biological needs met and making sure that there are no nutritional deficits, any other issues like genetic, chromosomal, whatever the case might be, and roll those in or out so we know what kind of profile we're working with. And then when we know a general idea of what that diagnosis might be, it really gives us as a therapist the framework that we know and what approaches to use when we're working with that specific child, with whatever they might have going on. And those open lines of communication really help us know what to work on and where to take them.”
Second, by looking at the bigger picture and creating an overall plan: “Are they going to go into kindergarten next year? Are they going to repeat kindergarten? Do we give them the gift of time? … And I just think it gives the family a little bit of peace to have someone reiterate those types of things and to let them know that you have a great team behind you supporting you and working on specific skills for that child's optimal development because that's what we all want.”
Third, by coordinating with the rest of the team and keeping parents in the loop: “The gold ribbon standard has been when the developmental pediatrician delegates therapists to the families to let them know who's going to work on what and what to prioritize…it's really important for someone to kind of give the parent that perspective and help them prioritize what services they need.”
We spoke with developmental-behavioral pediatrician Dr. Josh Mandelberg, MD, FAAP, about why he became a developmental-behavioral pediatrician and what he can do for families in this role:
TIP: If you can’t get in to see the specialist you want to see, put yourself on various waiting lists and see who pops up first.
Like developmental pediatricians, a pediatric psychologist can assist children with concerns such as missed developmental milestones or issues with feeding and sleeping. They can also help establish effective communication among a child’s providers, as well as help families identify their child’s needs and priorities.
We spoke with Danielle Nelson, Ph.D., a postdoctoral pediatrics fellow at UCEDD and CHLA, to learn more about pediatric psychologists and how they can play an important role in helping families plan and coordinate care. As Nelson explains, “There’s so much pediatric psychologists can do developmentally; if you have concerns about your child not speaking, for example, or need help figuring out why they’re not sleeping, sometimes doctors will catch it and sometimes they won’t. Pediatric psychologists are better trained in this — and you can ask to be connected with one.”
Nelson adds, “I help families plan and coordinate care, and sometimes help them clarify what they need and want. It can be overwhelming and there’s so much that needs to be done. A lot of parents experience a power dynamic with their provider. Part of my job is to empower parents and remind them that while doctors are helping their child, it’s their child, and they’re the one with the most knowledge of them — it’s important to feel empowered and have a voice in their care, and to not feel like you’re being bulldozed.”
Beyond developmental pediatricians and pediatric psychologists, Dr. Audrey Griesbach, MD, tells us that other team members can be case managers or care coordinators , depending on your situation. “Sometimes, given a child's specific developmental picture, it may be that the speech therapist becomes more of the case manager because that is where the primary problem is, or the OT. If it's a child with learning disabilities, it may be the educational therapist who then winds up managing a number of aspects of that child's care and coordinating with the school, and so on.”
Sometimes, it just isn’t possible to see a developmental pediatrician or pediatric psychologist in a reasonable time frame. Or, the other providers on your team aren’t able to coordinate or manage care. Luckily, they aren’t the only ones who can serve as effective care coordinators. There’s another person who could be perfect for this role:
No one knows your child better than you. This puts you in a unique position to advocate for their needs and put together a great care team. Here are some ways you can be your own best care coordinator:
Use all the resources you have at your disposal.
Read about what early intervention services are available to you here!
Choose providers you can talk to.
Conversations with doctors can often default to a discussion of services. Raising your concerns and sharing information about your child before asking for specific services can help you have a more thorough conversation with your doctor. Fran Goldfarb, Core Function Director of Community Education, Information Dissemination, and Technical Assistance at UCEDD, explains: “One of the things that we really look at doing with families is helping them, instead of asking for a particular type of provider, which they're never going to be able to do, to know how to raise concerns or share information in a way that leads to this discussion that may lead to that a referral to that system, or that type of provider.” It’s important that you have a provider who you feel you can talk to, who will hear you, and who will prioritize your child’s care. Goldfarb continues to say that, “Sometimes, families become slightly paralyzed because they don't know which direction to go first. And it's going to vary from family to family but it is also helping them work with someone who could help them prioritize what is most needed first, because you can't tackle everything.”
Prioritize and be honest with yourself about what you can and can’t do.
No one can do everything. Sometimes, the best option is to reach out and ask for help. “It’s important to prioritize the number one thing we should be focusing on — even if numbers two and three and four are also important, maybe they’re not urgent,” Goldfarb says. “We’re giving families some latitude to say, ‘This is what I can handle doing now, and this is what I’m going to do when I have some energy or time that’s freed up.’”
She adds, “We want to change that conversation to, ‘This is where I am, this is what my reality is, so help me figure out where to put my time and my energy.’”
Find a team you feel safe with.
Finding a safe space with a provider is one of the most important parts of building a team you can trust and feel comfortable with. Dr. Shafali Jeste explains the importance of feeling safe with your provider:
Organize and connect your team
Staying in regular contact with your care team can also be helpful, especially as you are coordinating care and making sure everyone is on the page. Rachel Madel, M.A., CCC-SLP, tells us that parents can absolutely ask their provider to connect them with specialists. Realistically, you may come across practitioners who aren't eager to collaborate with other specialists, which is why she tells us “it’s important to have good relationships with the providers. And then once that established trust, and rapport happens, then I think it's easier to connect and have your team collaborating. So I think just simply asking can go a long way.”
Madel continues to share how important it is to find a provider who is “curious and eager to learn information,” not someone who is stuck in their ways. Providers who are curious and open to learning new perspectives “will try to refer you out to other people who are like minded,” she adds. “And these relationships kind of build organically, but I think that curiosity and learning and being open is something that perhaps you can look for when you're looking for professionals to work with your child.”
First, consider why it’s important to connect your child’s providers.
Undivided Director of Health Plan Advocacy Leslie Lobel explains how communicating well with providers can make for safer care for your child:
She continues to explain how having a coordinated team can lead to what Undivided Leslie Lobel tells us are “aha moments” — something that no one else thought of that can make a huge impact on your child's wellbeing. She explains: “Any of the team members are capable of providing that one extra piece, that aha moment, whether it's because the OT and the speech provider have spoken, and the child has learned to tie their shoe in OT, and now the speech therapist is talking to them about shoes, or however that coordination is happening … If the developmental pediatrician is looking at that big picture, and taking that moment to really look wider, sometimes that piece can fall in, that can really promote everything to click or promote better health … But I've been in that aha moment in the offices of many different providers. So I think that's what families who are well prepared, and are connecting everybody and providing information, can maybe wind up with — that aha moment.”
Second, get the necessary paperwork in place.
Lobel explains how nowadays, sharing information with providers can be easy!
Third, use technology to share wins!
Madel tells us that sharing videos is the fastest and best way to show your team what everyone else on the team is doing. “I also have clients who are on shared iPhoto albums, Dropbox, Google — all the different ways we can share information.” She tells us that it can also “build momentum within teams and can be energizing for teams to see those small wins across the timespan of when we're treating a child. So those things are all really, really helpful if you can get everybody on board. And it usually starts with parent approval. So if parents are on board, typically therapists are like, ‘Great, let's have a place where you can share information easily.’ And that's the really cool thing about technology. It's pretty simple these days to share videos and pictures and all these things in a collaborative way.”
Ask the hard questions and align with your goals.
Dr. Marielly explains that as therapists, it’s their due diligence to teach parents what they’re working on, which can sometimes end up happening when there’s only 10 minutes left in a session. Because of that, she recommends that parents have quarterly or bi-annual meetings with the specialists working with their kids so that they stay in the flow of information. Staying informed is key! She adds that parents can then relay the information to the rest of the team or, if you can manage it, schedule a call with everyone. She tells us, “My preference with communicating is always a phone call because you can get so much more in there and just talk about it and ask questions and see what's going on. And if parents were more educated from the therapist’s perspective of what we were working on, it'd be easier for them to kind of bridge and be like, ‘Well my OT actually mentioned that. And I actually really think that you should talk to her.’”
Goldfarb also explains how knowing — and effectively communicating — your treatment goals can make for better interactions with providers:
