One of the most important aspects of having a care team is that we’re not doing it alone. Having a team of providers is like having a support hub of care, connection, and resources as we navigate the ins and outs of a new diagnosis. This can reduce stress and overwhelm so we can better meet our and our children’s needs. But building a care team is not without its challenges. Nearly 35% of parents in California report difficulty in finding support, providers, and specialists. A Child Trends report using data from the National Survey of Children’s Health shows that girls with special healthcare needs are more likely than boys with special healthcare needs to have problems getting necessary referrals.
You may be thinking to yourself, “I don’t know what’s out there,” “How do I know what specialists my child needs?” or “Where do I even start?” Finding the right team may feel daunting, but there are ways to find the supports you need, one step at a time. Here are three expert tips on adding new members to your care team:
For parents who have just received an initial diagnosis for their child — whether their child is a week old or 10 years old — the first step can often be the hardest. Tip number one is to start local. Shafali Jeste, MD, Chief of the Division of Neurology at Children’s Hospital Los Angeles (CHLA) and Professor of Neurology and Pediatrics at Keck School of Medicine of USC, explains the first step parents should take when seeking support after receiving a new diagnosis (and it doesn’t involve a broad Google search!):
Dr. Jeste tells us that having a primary care provider experienced in caring for kids with complex issues is important as a local support hub. However, multidisciplinary clinics that use a team-based approach can be a great addition to your child’s team. Listen to her explanation in this clip:
If you need somewhere to start, we’ve compiled a list of two dozen of the most common childhood disability diagnoses in the United States and organizations where you can learn more and find community support.
Getting to know a provider is an important part of building our care team. Tip number three is to ask lots of questions! You can ask yourself questions as you begin your search — such as what qualities are the most important to you in a provider (availability, breadth of knowledge, advocacy, etc.) — to track how you feel as you meet with potential providers.
But what should parents be looking for in a potential provider? Dr. Jeste recommends asking lots of questions, such as: “Does this feel like a safe space for me to share?” and “Are you willing to communicate with and/or coordinate with my other providers and specialists?” In this clip, Dr. Jeste shares a few tips for parents when looking for a new team member:
Here are some questions advocate and author Kelley Coleman recommends:
For kids in early intervention and those who receive a diagnosis after the age of 3, the kind of specialists needed will depend on the diagnosis. But generally, the care team will involve a medical team, a therapy team, an education team, and maybe even some social/community resources. These professionals and specialists may evaluate our kids to identify areas of concern and put together a treatment plan to address those areas with different types of therapies, such as speech, occupational, physical, behavioral, hearing, and vision therapy.
The medical team
When building your child’s medical team, you will most likely have one person overseeing your child’s medical needs and guiding you to other specialists your child will need. That overseer may be your child’s primary care provider or pediatrician, or maybe even a developmental pediatrician. Besides your primary caregiver, your child may also need to see a pediatric psychologist, neuropsychologist, psychiatrist, ear, nose, throat specialist (ENT), endocrinologist, cardiologist, urologist, neurologist, gastrointestinal specialist (GI), dietician, orthopedic surgeon, audiologist, ophthalmologist, vision specialists, and various other specialists.
But as a first step, start with your child’s pediatrician or a developmental pediatrician, who can help you look at the big-picture overview of your child’s life. Developmental pediatricians treat children with developmental disabilities and other developmental concerns and can also play a central role in coordinating care, but seeing one isn’t always an option as they can be very hard to find and the waitlists can be long. But many other options are available.
As you navigate the complex journey of building a great care team and getting the right support to meet your child’s needs, see our glossary of medical specialists who commonly serve children with developmental delays and disabilities, from audiologists to neurologists to developmental psychologists.
The therapy team
When building your child’s therapy team, it’s important to think about the people who can best support your child’s ability to thrive and enjoy themselves at home, school, and out in the world. These specialists can include occupational therapists, physical therapists, speech and language pathologists, behavioral specialists, mental health specialists, and more. The therapy team can even have micro teams, such as a mental health team and behavior team. 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.
Note that in California, early intervention services for children ages 0-3 are provided through the Early Start program, which includes Regional Centers, Family Resource Centers, and Special Education Local Planning Areas (SELPAs).
The education team (children age 3+)
As you move through the journey of building your child’s care team, you will eventually find yourself back in school — your child’s school! Having an education team who is planning for your child to thrive in school is very important. Your child’s education team can include the IEP team (including teachers, school social workers and psychologists, educational therapists, and inclusion specialists), tutors, paraeducators, 1:1 aides, and more — and would fall under “related services” in the IEP.
While therapies may overlap, such as speech therapy at school and speech therapy at a clinic or hospital, there are differences to consider when deciding which specialists to add to your team in which setting. What’s important is that you are coordinating care between all providers so that the goals are always aligned and fulfilling their purpose. Our article on school-based and clinic-based services outlines the differences between them.
Home, social, and community teams
While your medical, therapy, and educational providers are major building blocks of your child’s care team, there are other team members to consider who can offer much needed value and support. These include Regional Center coordinators, respite and child care providers (which may or may not be coordinated through Regional Center), IHSS providers, special education attorneys and advocates, and local social and community resources, such as Scouts, Friendship Foundation, activity programs such as My Gym, camps, faith-based organizations, family members and friends, and more.
Fran Goldfarb, retired Core Function Director of Community Education, Information Dissemination, and Technical Assistance at USC’s University Center for Excellence in Developmental Disabilities (UCEDD), tells us that connecting with other families who can relate and offer support is very important. “We also highly recommend that they get in touch with their local Family Resource Center,” she explains, “especially families who are Early Start, because they're talking with folks who are parents and are very experienced with making their way through Early Start and getting support, pulling that team together and effectively using the team.”
For more examples of family-centered resources you can include in your care team, check out our article on socialization and inclusion.
What if a specialist isn’t available?
What if you’ve found the perfect specialist, but they’re not available? If the specialist you want has a long waiting list, Lobel recommends getting on the waiting list, filling out all the necessary paperwork they require, and staying in touch. This way, if the provider has a cancellation or a sudden opening, “if you have shown your readiness to jump into whatever spot may become available, then having all your paperwork completed, filling every sort of bureaucratic task that that office requires, and having all your ducks in a row will make it easier for them to choose you to slot into an opening.” You can also call the office once a month and ask if there have been any changes to the schedule or waitlist, mentioning that you live close by (if you do) and can be there in 10 minutes if a slot opens.
What if my child needs a specialist who is out-of-network?
Lobel tells us that your child’s health plan can play a role in what specialists you can access, and the most important thing for parents is to be aware of the type of plan you have; your plan’s benefits and coverage; and what annual restrictions or limits on services exist, if any, there are on building specialists into your child's care team “so that you can make an informed decision about who you fall in love with to be a member of your child's team.” For example, unlike with a PPO, with an HMO, your primary care physician will be the gatekeeper who will have to unlock access, referrals, and authorization for specialty services.
If the specialist you absolutely want is not in-network with your plan (learn more about in-network specialists here), you can appeal and request for an authorization for the out-of-network provider to be reimbursed at a higher rate. “But it’s not a matter of preference,” Lobel says. “The plan is really not going to give you someone out of network at a higher rate of reimbursement because you prefer them. You have to show that it is medically necessary, that it's the plan’s obligation, because there is no one in-network who is qualified and available to provide that service. If you call every OT or every developmental pediatrician or every person on your child's plan, and either they are not doing peds or they're booked out for a year, or they don't have the specific subspecialty or the specific training that your child needs in their team member, you can advocate for increased reimbursement” for someone out-of-network.
What if insurance denies my request for a certain provider?
As Lobel says in this video clip, the most important thing to know when your insurance denies your request for a provider is the reason. Why is the plan saying no? “You really have to read all the pages of the letter or the email that comes, and somewhere buried in there will be the exact reason that you're receiving a denial. And you need to make sure that you're addressing that denial,” Lobel says. Read more tips from Lobel in our article Insurance Claim Denials and Appeals 101.
How do I fund it all?
Funding our kids’ medical and therapeutic needs can feel daunting, but there are options — from private insurance to Medi-Cal to Regional Center, and other funding sources. For more information, read our article How Do We Pay For It All?
Now that you’ve put together a great care team, the next step is figuring out how to coordinate it all. Children with disabilities and their families often have multifaceted needs that span medical, therapeutic, and educational systems and more. Because of this, there is a greater need for coordination of care and strong partnerships among parents, providers, and communities. While the American Academy of Pediatrics (AAP) defines care coordination as “a process that links children and youth with special health care needs and their families with appropriate services and resources in a coordinated effort to achieve good health,” they continue to say that families are often the main source of care coordination for their children.
In a study published in their journal, Pediatrics, only 19% of the primary care pediatricians reported always linking with schools for coordinating medical and educational needs. As Goldfarb explains, “One of the things that we know is that within each system, there is care coordination, but the care coordination tends not to cross systems. One of the big issues with that is funding for that kind of care coordination because it's not something that's necessarily a billable service through either Medi-Cal or through someone's private insurance.”
Providers usually can’t dedicate the time or resources to appropriately coordinate care that’s child- and family-centered, so you as the parent will more often than not be your team’s quarterback. If you’re feeling overwhelmed at the idea of that, know that that’s a totally appropriate feeling to have. But there are also a lot of advantages to being the quarterback of your child’s team. Let’s explore what it looks like to coordinate care as a parent.
The most important team member? YOU
While a care team involves many people, as parents, we are at the heart of it. You can think of it as a solar system: you and your family are the sun, and everyone else revolves around you in wider and wider circles. The next circle around you is your medical and therapeutic team, and the next circle is all your community resources, and so on. As you move through your care journey, the circles will expand, but you will always be at the center.
More often than not, the primary person who will coordinate a care team is you: the parent. As much as we’d like for someone to take the reins and coordinate providers, goals, appointments, documentation, and everything else that accompanies a new diagnosis, the reality is that providers are often busy and can’t always be quarterback to our carefully built team. The truth is, 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.
How can parents feel more confident being their own coordinator of care? Here are the three most important things parents should focus on or be aware of when coordinating care for their child:
With so many providers, specialists, and therapies, Dr. Jeste recommends that parents document and keep track of everything!
Something that might make coordinating care a bit simpler is signing release of information (ROI) forms so that doctors can talk to each other, even if they aren’t in the same hospital system. Danielle Nelson, PhD, from USC’s University Center for Excellence in Developmental Disabilities (UCEDD), 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.”
Lobel shares a similar sentiment, telling us that it isn't necessarily easier or more advantageous to have all team members in-network, as long as you’re sharing information. “I don't believe that the network status is the sole factor relevant to the treatment experience,” she says. “It's certainly relevant to your financial status and for your ability to float that team financially over time. But whether or not Provider A or Provider B has the same relationship to your health plan doesn't really carry over into treatment. What does is you making sure that you share information, that you're not dealing with silos of information. If you get report A, make sure it gets emailed or uploaded to Provider B.”
The good news? Most doctor’s offices will ask you where you'd like them to share your appointment reports, and you can write in all your other providers’ names. Lobel recommends asking providers what medical record system they use (it’s usually digital nowadays!) and making sure you’re authorized to log into that system and grab those reports and documents instead of having to call the doctor's office. You can then easily upload those medical records into a digital binder for your IEP team!
Conversations with doctors can often default to a discussion of services. Raising our concerns and sharing information about our children before asking for specific services can help us have a more thorough conversation with our doctors and create a holistic and sustainable framework for managing and decision-making. A study published by the British Institute of Learning Disabilities showed that lack of information from providers is the most commonly cited unmet need among parents, which can make any parent feel helpless. At the end of the day, most parents want to be informed enough to make the best decisions for their child, and that starts with asking the right questions and having the tools to navigate systems without feeling like your hands are tied.
Goldfarb 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.”
No one can do everything. Sometimes, the best option is to reach out and ask for help. “Some families are going to have a lot of capacity to manage a number of different things. Other families may be feeling completely overwhelmed. 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.’”
Staying in regular contact with your care team will be helpful as you create goals and a big picture vision for your child’s journey. The study we referenced earlier also showed that relationships between parents and providers are vital for the overall health of children with disabilities, with the greatest indicators of a good relationship including “trust, respect, communication, and cultural sensitivity.” But it’s not an easy job — the study found that a great number of parents are frustrated in their relationships with providers, most of them wanting “a collaborative relationship characterized by mutual cooperation consisting of shared expertise, shared information, and shared decision making” that isn’t always there, for a number of reasons.
As we discussed earlier, parents are often the main advocates in keeping the care team motor running. This is why knowing — and effectively communicating — our thoughts, feelings, concerns, and treatment goals can make for better interactions with providers. Honesty, trust, and safety are three of the biggest things to keep in mind when communicating with our team (more on these below!).
Picking a team who talks to each other
When we have a lot of team members, how do we make sure that everyone is aligned? What happens if specialists have different opinions or different ways they want to treat? How should parents handle those differences? Dr. Jeste explains how to pick team members who communicate and why trust matters.
Being honest with your child's provider
Sometimes parents keep information from their provider for fear of judgment, but Dr. Jeste tells us that some complementary or alternative treatments, for example, can interfere with and interact with the treatments a provider is doing, which can be the reason certain behaviors or symptoms present. So it’s always important to be forthright with our team members. Listen to her in-depth explanation here.
Making sure that all our providers stay in the flow of communication makes for not only better care but also safer care, especially if there’s a medication change or a new piece of equipment. Listen to Lobel explain more about this here.
Getting everyone on the same page
Every provider has their own speciality, which can make it hard to see how everything can co-exist, including goals. Making sure the team has a holistic view of our children’s needs and goals is very important. 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.”
So how do we make sure that everyone on the team is aligned with our children’s treatment goals and the big-picture vision? Lobel explains how to coordinate care and make sure everyone is on the same page:
Creating a narrative of care
Just like storytelling, creating a narrative around our children’s diagnosis and treatment can help make sense of things for them and for ourselves. As we explain in our article about disability advocacy, as parents, it’s important to assure our children feel that they will be talked with instead of about. Of course, this will look different for a younger child who is not yet communicating than it does a high-schooler, as well as kids who have difficulty verbally speaking or communicating. But we can try to involve them in their care plan in ways that play to their age, strengths, and preferences.
Making sure our children have a voice in their own care is vital, Nelson tells us. “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.”
Check out our article with books and other resources that can help with these conversations.
Creating a safe space with your child’s provider
The term “safe space” isn’t reserved only for mental health — it also applies to medical health and medical providers. Finding a provider we feel safe with is one of the most important pieces of communicating effectively and meaningfully with our team and allowing our children to do so as well.
Cecily Betz, PhD, Associate Professor of Clinical Pediatrics at USC Keck School of Medicine, and Nursing Director and Research Director at USC’s University Center for Excellence in Developmental Disabilities (UCEDD) at Children’s Hospital Los Angeles (CHLA), tells us: “Some parents are not comfortable speaking up for a number of different reasons, so it’s incumbent on healthcare professionals to support parents … that it is appropriate and acceptable and supportive of your child for your child to be asking questions, and if there’s an issue or you have questions, you can always call us and we can talk further about that. Because kids are going to model how their parents interact with healthcare professionals, and as professionals it’s really up to us to set the stage for openness, support, and respect — that person-centered, family-centered approach.”
For more on why creating a safe space is important, listen to Dr. Jeste’s explanation here.
This journey will likely involve many emotions, from fear to confusion to hope to love, and everything in between. But having a team of partners who we can trust and who understand us, validate our fears, support our goals, guide us through the muck and confusion, and fill us with hope is the key. As we say in our article Letter to a New Parent of a Child with a Disability, “Raising a child with disabilities often means gaining a team of professionals to help you — occupational therapists, physical therapists, neurologists, urologists, you name it. Trust us — you will find partners in many of these people, and you will learn from each other in the process.”
We can absolutely navigate this journey with hope, as Dr. Jeste tells us, but it’s important to find the right champions for our children:
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