The 4 Ws of Early Intervention: WHO Do You Go To for Help?

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 a consistent (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.

 


  Who may make up your child’s care team?

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.

 


  Who can help you prioritize and coordinate care?

 

Developmental pediatrician

Developmental pediatricians treat children with developmental disabilities and other developmental concerns. They can also play a central role in coordinating care. 

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:
 

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When asked whether developmental-behavioral pediatricians could be considered the “quarterback” of a child’s care team, Dr. Mandelberg says he feels more like a coach:

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While developmental pediatricians can be a great asset to your child’s care team, seeing one isn’t always an option, according to Kathryn Smith, RN, MN, DrPH, associate director for policy at the USC University Center for Excellence in Developmental Disabilities (UCEDD) and nurse care manager at the Boone Fetter Clinic at Children’s Hospital Los Angeles (CHLA).
 

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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.

 

Pediatric psychologist

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.”

Sometimes, it just isn’t possible to see a developmental pediatrician or pediatric psychologist in a reasonable time frame. 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:

 

You! 

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’s available to you here!
     
  • Carefully consider your questions.
    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:

    “I prefer having families say, ‘Let’s talk about what my choices are and why you think the one you recommend is the best choice. Help me understand your thinking rather than telling me what to do.’ Then we’re starting to help families build some tools for actually handling this because in all likelihood, even if they do have someone who can do care coordination with them, they will not always have that resource. We don’t want to relieve them of the burden; we want to help them learn how to manage those situations so that they have these skills.”
     
  • 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.’”
     
  • Organize and connect your team 
    Staying in regular contact with your care team can also be helpful. We asked UCEDD’s Danielle Nelson how to keep your care team connected and informed so that everyone on the team can have a holistic view of your child’s needs and goals. 
     
    • First, consider why it’s important to connect your child’s providers: Nelson explains, “Everybody has a myopic view based on what their speciality is. When the orthopedic surgeon comes in, they’re looking at bones and pain in this area; another provider has a myopic lens on what they’re focused on in the body, but when multiple providers come together, sometimes the puzzle pieces come into focus and create a wider, better picture than all these pigeonholed views of the kid. Moreover, creating big-picture understanding and goals for your child’s care is so important because it gives your child a voice in their own care and prioritizes their perspective.”
       
    • Second, get the necessary paperwork in place: “One of the most important steps parents can take is to sign ROIs (release of information form) so that docs can talk to each other if they aren’t in the same hospital system,” Nelson says. “If there’s even a slight barrier, many docs will give up more quickly because they are so overwhelmed and have so much work they may not be able to pursue it. Parents should feel good about signing an ROI so their docs can talk to each other; you can stipulate what you want shared and what you don’t, but that’s a really important step to make sure you’re doing everything you can to open the channels so that it makes it easier for docs to coordinate and communicate about your child’s care.”
       
    • Finally, make sure your child has a voice in their own care: Nelson explains that creating big-picture goals is important because it “allows for the child to integrate what they feel about themselves into a more holistic picture, rather than feeling, ‘I heard this from this person, I heard this from this person, but what’s true about what my life is going to be like and who I’m going to be?’ A pediatric psychologist can help make that narrative for the child and pull these things together. We can only help with what we know, so it’s important to connect with providers to create a healthier and more holistic narrative for the family and also the child.”
       
  • Ask the hard questions and align your goals
    Goldfarb also explains how knowing — and effectively communicating — your treatment goals can make for better interactions with providers:
     

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Now that you’re familiar with the medical and therapeutic professionals you can consult, read on to learn about what early intervention is and how it can help your child
 

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