For many parents, there’s comfort in the familiarity of their child’s doctor — a trusted partner who truly understands their needs and history. But as our children grow, their healthcare needs change. For parents raising children with disabilities, this frequently involves moving from a pediatric care team to adult providers capable of addressing their changing needs. In California, nearly 35% of parents report challenges in finding specialists, support systems, and necessary healthcare services. Additionally, research shows that girls with special healthcare needs frequently encounter more challenges than boys in securing essential referrals.
To help us better understand this complicated transition, we turned to experts, including Linda Tirabassi-Mathis, PhD, RN, CPNP, CNS, program director, healthcare transition from pediatric to adult care at Miller Children’s and Women’s Hospital; Leslie Lobel, director of health plan advocacy services at Undivided; Jennifer McLelland, member on the Medi-Cal Members Advisory Committee, collaborate with Little Lobbyists, and writer for the California Health Report; and Lisa Concoff Kronbeck, public benefits specialist at Undivided.
Let’s start by defining what a care team is. A care team includes the professionals who support your child’s development across many areas — medical, educational, emotional, social, and more. These may be therapists, doctors, educators, or specialists who work together to help your child build the skills they need to thrive at home, in school, and in the community. Whether you’re just starting this journey or reassessing what your child needs as they grow, creating a care team can feel overwhelming. But it’s a process that evolves over time, and knowing where to begin can help.
Typically, a child’s care team may include a pediatrician or developmental pediatrician who oversees overall care, along with specialists such as psychologists, psychiatrists, neurologists, endocrinologists, audiologists, and others, depending on your child’s needs. Many families also work with therapy providers — such as occupational (OT), physical (PT), speech (SLP), or behavioral therapists — who help address specific developmental goals. As your child approaches adulthood, it’s important to start identifying adult care providers who can take over those roles. Some pediatric providers may help coordinate this shift, but planning ahead is key to ensuring continued, consistent support.
As your child moves into adulthood, finding the right doctors and specialists is a key part of the process, but with some preparation, the transition doesn’t have to be overwhelming. It can help to think of it as a gradual process — one that begins well before your child officially ages out of pediatric care. Building relationships with future providers, gathering recommendations, and learning what your insurance will cover all take time. As Lobel stresses, “Don’t wait till your child is seventeen-and-a-half. Seventeen-and-a-half is late. The earlier you begin, the more confident you’ll feel about your decisions when the time comes.”
Dr. Tirabassi-Mathis tells us how you can find new doctors before the transition:
Many families have children who are cared for by specialists in a children’s hospital system, such as Children’s Hospital Los Angeles (CHLA), Children’s Hospital of Orange County (CHOC), or Miller. In some cases, CHLA has extended care for patients up to age 22. However, while some hospitals offer flexibility in transition support, there comes a point where they can no longer provide care. As Lobel notes, at a certain point, families will need to transition out of the system. Establishing new medical connections ahead of time and planning early can help make that transition smoother. Here are the steps you can take to begin this transition process.
Check whether your child can continue seeing their current specialists
Lobel emphasizes that while some children will need to transition, others might continue seeing certain specialists into adulthood. She shares her own family’s experience: “My daughter is 30, and she sees a developmental pediatrician that she’s seen since she was two. Now, her specialty is still a developmental pediatrician, but some practices will see your child over a lifespan. [At a] children's hospital setting, they'll age out of a pediatric PT or OT clinic, [which] might feel uncomfortable for your child.” In other words, while some providers — like developmental pediatricians — might continue caring for patients into adulthood, services such as physical (PT) or occupational therapy (OT) often have age limits, and pediatric settings might start to feel less appropriate as children grow older.
Lobel explains that transition decisions will vary depending on the provider and a family’s specific needs. “My daughter has a G-tube. The GI who’s managing the care of that G-tube will either stay or they’ll have a GI that they frequently pass people to. And then you ask those questions: what percentage are you familiar [with]? Are your facilities able to accommodate an adult? It’s a big transition.”
Start your search early
To navigate this transition smoothly, Lobel encourages families to start early and seek guidance from current providers — even if they’re not ready to make the leap. Adult providers can have long waitlists, and there might be several steps involved in verifying whether they take your insurance, are accepting new patients, or have experience working with patients with similar needs. Lobel recommends, “The best thing to do is to talk to the doctors that your young adult child has now, or talk to them when your child is 16 or 17, and ask them what their patients do when they age out of their practice. Sometimes, the doctor will keep them past 18. They won’t keep them indefinitely at a children’s hospital, a large setting, but if it’s a small practice or a solo practitioner doctor, they just may keep you on, especially if it’s someone like a developmental pediatrician. The developmental pediatrician may see your child way past the age of 18, or they may be a great gateway to get recommendations for others.”
Sometimes, Lobel adds, if a child has a disability and requires a specialist for a specific diagnosis, they might not need to switch all their doctors right away. In some cases, children can continue seeing their current specialist or even use their parent’s doctor, depending on the nature of the disability. Often, specialists who treat children with specific needs will either continue providing care or refer families to trusted colleagues. While the process might feel daunting, it could also be straightforward.
Ask your current providers for referrals
Lobel suggests asking your child’s current pediatric specialists directly: “Do you know an adult GI doctor? Do you know an internal medicine or primary care physician, not a pediatrician, that sees enough of a population like my child to be able to continue care?” Providers who’ve had patients age out of their practices often have reliable recommendations, as they’re familiar with adult providers equipped to care for young adults with similar needs.
Ask other parents
The parent community can also be a great source of support. Families who have been through this transition can share useful advice and personal experiences. You might meet them through school, community programs, or other activities. As Dr. Tirabassi-Mathis puts it, “Word of mouth is always a good way to learn about people in the medical setting . . . talking to friends and families [and asking] what doctors do they see? How do they like them? Do they respond to them well?” These connections can offer both reassurance and practical guidance. Asking other families where they’ve found adult providers can be really helpful, too — even if they don’t have specific referrals, they might help you figure out what questions to ask or give you ideas of where to look. Families who are a few years ahead of you — maybe with adult kids in college or day programs — might be especially useful sources.
Verify the details
Once you’ve created a list of potential providers, take time to verify a few details. Dr. Tirabassi-Mathis recommends checking with your insurance company — either online or by phone — to confirm that the providers are in-network. The next step involves contacting the doctors’ offices to verify that they still accept your insurance. While finding the right provider can take time and sometimes feel challenging, the effort is essential for ensuring a good match for your family. Remember that your choice doesn’t have to be permanent. Dr. Tirabassi-Mathis advises, “They shouldn’t be locked into a decision. If they decide on a physician or a provider and they’re not pleased with it, then they have the ability to make that change, even if they’re in a managed healthcare plan. Whereas in a PPO plan, there are more options available.”
Lobel points out that choosing the right healthcare provider for your adult child is a big decision, and asking the right questions can help you feel confident that you’re making the best choice for their care. The goal is to find a provider who understands your adult child’s specific needs and can provide compassionate, effective care.
Lobel emphasizes the importance of inquiring about the provider’s experience with your child’s specific diagnosis. She suggests asking how familiar they are with caring for adult children who have the same condition. This question can help you gauge their expertise in addressing similar needs. It’s also important to ask whether the provider follows ADA guidelines — this helps ensure your child has access to the care they need, especially if mobility or accommodations are a factor.
When your child is transitioning to their own insurance plan, you might be wondering how that will impact their therapies and services — especially if they’re ongoing. The good news is that turning 26 is considered a qualifying life event, so your child doesn’t have to wait for the annual open enrollment period to choose a new plan. If your child has a disability, as Lobel states, that might also be considered a qualifying event. The plan can provide the family with information on the process and documentation required to verify the qualifying disability.
To get started, it’s a good idea to compare different plans and take a close look at which providers are in-network, as Lobel explains. This step is important because finding the right fit early on can help prevent gaps in care or unexpected surprises.
It’s also worth remembering that switching plans could mean some adjustments, especially if your child has built a routine with certain providers. Lobel suggests asking questions upfront about how a new plan might affect ongoing therapies, so you can feel confident your child’s care will stay on track. Keeping these details in mind can make the transition feel a little less overwhelming.
Migrating prescriptions as your child becomes an adult
As your child grows older, you might wonder whether their prescriptions will change. The answer can feel a little tricky because it often depends on your child’s unique situation. It’s helpful, says Lobel, to work closely with their doctor to review and adjust any prescriptions, ensuring their care continues smoothly during this transition.
Medications usually remain consistent, but doses might need adjustment as your child grows older. Lobel also suggests checking with your older adult child's pharmacist to see if the price of a current medication would change when the dosage increases.
To stay ahead, it’s a good idea to check with your pharmacy or insurance provider about coverage and costs. Planning ahead can help make the transition smoother and give you peace of mind.
Transferring to adult care can be especially complex if your child has a diagnosis that requires specific expertise, such as autism, cerebral palsy, or ADHD. Finding providers who understand the nuances of these diagnoses — and who have experience with young adults — requires a bit of detective work.
Dr. Tirabassi-Mathis explains that adult healthcare differs greatly from pediatrics. In the adult model, generalists such as internal medicine doctors, family practice doctors, and general practitioners often manage common medical common diagnoses. She states, “In pediatrics, the pediatrician focuses more on developmental issues, common childhood illnesses, and preventive issues; they will refer patients with a speciality medical diagnoses to a sub-specialist. Unfortunately, there are not specialists in adult care to match every specialty in pediatrics. For example, we don’t have developmental pediatrician equivalents in the adult world.” Another example: some general practitioners might provide medication support, but not all have the expertise needed for comprehensive management. “There are neurologists that do specialize in some patients with cognitive differences,” Dr. Tirabassi-Mathis explains, though their limited availability can pose challenges. Psychiatrists frequently manage anxiety and ADHD medications, while general physicians may manage care for an individual with CP and coordinate with or refer to other specialists clinically indicated. Pediatric specialists, particularly those affiliated with children’s hospitals, are often well-connected with adult healthcare providers, which can make the shift to adult care more manageable. These specialists are familiar with adult professionals who can take over care as your child transitions. For example, pediatric GI doctors might refer patients to adult specialists skilled in managing care issues such as G-tubes. Lobel highlights that pediatric teams, especially in children’s hospitals, often have established relationships with trusted adult providers who are recommended by other families in the practice.
Be flexible in your search
Lobel adds that finding a specialist doesn’t always mean there will be a “CP specialist” sign over the door, but rather it’s about determining whether they have patients with CP in their practice. “You’d want to find an orthopedist who has a number of patients in their practice that have a CP diagnosis. They may not have a sign over their door [saying] ‘CP specialist,’ but the question is, do they have patients on their caseload? Are they familiar with the issues that young adults with this diagnosis have?” The same approach applies to finding providers for other conditions such as ADHD, where a mental health provider or someone involved in medication management could continue care into adulthood.
Even with reliable referrals, as Lobel tells us, families might still need to advocate for their child’s specific needs. She underscores the importance of identifying providers who are open to learning and collaborating with families. “Our daughter has a G-tube that’s different from a lot of other people’s G-tubes. It’s a G-tube that we like, and we’ll take her to a doctor, and they will have never seen that G-tube before, and we wind up teaching them something.” When transitioning to a new provider, there might be a learning curve for both you and the doctor. Be patient with the process, as everyone will need time to get up to speed.
When you start narrowing down your options, as Lobel advises, don’t hesitate to ask direct questions about the provider’s experience with young adults who have similar needs. The transition to adult care often takes time and persistence. Beginning the process early, seeking community support, and maintaining a proactive approach can aid in creating a care team that grows with your child’s changing needs.
Questions to ask a potential new provider:
You’ll be glad to know that therapies such as OT, SLP, and PT don’t have strict age limits, according to Lobel. These services can continue to support your child as they move into adulthood. However, the transition isn’t always seamless.
Concoff Kronbeck explains that children with Medi-Cal are covered under the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit until age 21 — a set of rules from the federal government that requires states to cover more services for children than they do for adults — which allows for broader access to medically necessary therapies. The challenge comes after that: the definition of “medical necessity” shifts significantly in adulthood. While therapies for children are often approved if they help improve or manage a disability, adult services typically must prevent serious harm or loss of function — which can make continued coverage harder to secure unless it’s tied to something such as post-surgical recovery.
Lobel adds another layer to consider: while adult PT providers often focus on areas such as sports medicine or injury rehabilitation, it’s a niche field to find someone experienced in treating adults with disabilities, such as cerebral palsy, or individuals who use mobility aids. Lobel advises, “The trick will be to work with your current care team to find someone who specializes.” The right match might even come down to your young adult’s comfort level — some might prefer transitioning to a facility with other adults, while others might feel just fine sticking with their pediatric provider.
She encourages families to start this conversation early with their child’s current OT, PT, or SLP provider. Some pediatric therapists might feel confident treating into adulthood, while others might refer out to colleagues with the right equipment and expertise. Comfort level matters too: your young adult might prefer transitioning to a facility with other adults, or they might feel more at ease staying with the provider they already know. Either way, a little advance planning can make the path forward clearer.
If your child is approaching adulthood, you might be wondering how long they can stay on your health insurance. The good news? Most private insurance plans allow dependents to stay covered until they turn 26, no matter where they live or how they manage their finances. Here’s what that means for you, as Lobel explains:
These rules give families time to plan ahead — and they’re backed by federal protections under the Affordable Care Act.
The Affordable Care Act (ACA) helps protect people with disabilities and those with ongoing care needs. In addition to allowing dependents to stay on a parent’s plan until age 26, the ACA also ensures that:
While some benefits change after 18 or 21 depending on the program, the ACA helps create a stronger foundation for continuity of care during this transition period.
Good news here: not everything shifts just because your child turns 18. When it comes to essential equipment — such as hearing aids, AAC devices, and wheelchairs — coverage usually stays steady. According to Lobel, DME is not approved by age. That means if something is still considered medically necessary, insurance benefits don’t automatically change just because your child becomes a legal adult.
Of course, that doesn’t mean getting these items is always easy. Lobel notes that securing funding for tools and equipment such as hearing aids or communication devices can be challenging no matter how old your child is. But there’s a silver lining — the process doesn’t get harder just because of an age cutoff. These types of tools are considered lifelong supports, and, as Lobel explains, “those lifetime needs and benefits are not limited to certain age groups.”
What might change as your child grows is the equipment itself. Their needs might evolve, whether that’s a need for a larger wheelchair, a more sophisticated AAC device, or stronger hearing aids. “What they require may change in terms of size or sophistication,” Lobel says. Additionally, Medi-Cal may have funding caps for certain devices, such as hearing aids, that do not apply to children.
So while funding hurdles can still exist (as many families already know), the core benefit itself doesn’t disappear after 18 or 21 — which is a small but meaningful relief.
Shifting from childhood to adulthood funding systems can be a big adjustment, with various agencies and rules to navigate. Here’s what you need to know.
When your child reaches 18, Medi-Cal waivers, such as the Home and Community-Based Services for the Developmentally Disabled (HCBS-DD) waiver and the Home and Community-Based Alternatives (HCBA) waiver, don’t suddenly vanish or undergo major changes. HCBS-DD depends on the person’s living situation and whether they get on SSI, and with the HCBA waiver, nothing should change at 18.
The HCBA waiver
In 2018, the HCBA waiver program changed how it handles its budget, McLelland tells us. Before that, each person in the program had to prove that their in-home care wouldn’t cost more than what it would cost the state to care for them in a facility. That was called "individual cost neutrality." The problem? Unless your child had really intensive medical needs (like a ventilator or trach), the state would say, “It’s cheaper to care for them in a group home or institution,” and they’d cut off or limit services, especially when the child turned 21.
In 2018, the rules changed to a more flexible system called “program-based cost neutrality.” Now, the state looks at the overall costs of the whole program, not just each person’s situation. That means your child isn’t penalized if their care costs more than the institutional average — as long as the program as a whole stays within budget. This is a huge factor in why the program has expanded so much — under the old individual cost neutrality rules, no one with a level of care less than subacute (trachs or vents) met program standards for cost neutrality.
Since the HCBA waiver program has been full since July 2023, planning ahead is key. Currently, priority goes to kids under 21 and those moving from healthcare facilities or other HCBS programs.
Private duty nursing after age 21
For children aged 0-21, Medi-Cal pays for private duty nursing care through the EPSDT benefit, even for children enrolled on the HCBA waiver. This means that children with Medi-Cal coverage don’t usually have to enroll in any special programs like the HCBA waiver to access nursing care at home. But how does this work before and after age 18?
As McLelland tells us, “If a child who needs private duty nursing is enrolled in the HCBA waiver prior to age 18, the child is enrolled in the HCBA waiver but HCBA waiver only provides "case management," it doesn't authorize or fund nursing. From age 18-21, nursing hours are approved/paid for by Medi-Cal EPSDT through the same process as they were when the person was a child. After the 21st birthday, nursing hours are approved by the HCBA Waiver Agency and paid for by the HCBA waiver directly. Nothing is supposed to change for the recipient, it's just a different pot of money.” Note that this is the least common scenario; most kids who are getting private duty nursing through MediCal EPSDT are NOT enrolled in HCBA as children.
What’s the most common scenario? McLelland tells us, “If a child who needs private duty nursing is not enrolled in the HCBA waiver prior to 18 because they're getting Medi-Cal through another pathway (SSI, family income, HCBS-DDDD waiver, etc.), then their nursing is approved/paid for by Medi-Cal EPSDT through age 21 without HCBA involvement. They should apply for the HCBA waiver at age 18 with enough time to be enrolled by their 21st birthday. After the 21st birthday, nursing hours are approved by the HCBA Waiver Agency and paid for by the HCBA waiver directly. Nothing is supposed to change for the recipient, it's just a different pot of money.
The HCBA waiver is the only Medi-Cal program that pays for private duty nursing for adults over age 21. Private duty nursing is not a covered benefit for adult Medi-Cal beneficiaries who are not enrolled in the HCBA waiver. Although adults can enroll on the HCBA waiver, there is usually an extensive waitlist, and priority goes to children under age 21, people waiting to move from medical facilities into the community, and people waiting to transition from other HCBS waivers because their needs are no longer being met. If a young adult living in the community is not fully enrolled in the HCBA waiver by six months after their twenty-first birthday, they will lose priority status on the waitlist, and until they are enrolled there is no funding source to pay for home nursing care.
Can Regional Center help?
In some cases, the Regional Center system has authorized payments for private duty nursing services for young adults on the HCBA waiver waitlist. If your young adult is a Regional Center client and is still on the HCBA waiver waitlist as their twenty-first birthday approaches, ask for an emergency IPP meeting with the Regional Center. A young adult who has been receiving home nursing care and suddenly loses access to that care is at extreme risk for institutionalization. The Regional Center has the ability to authorize payments for private duty nursing if the service is necessary to keep a client safe at home.
For young adults who have medically intensive disabilities, who turn 21 while still on the HCBA waiver waitlist, and who are not eligible for Regional Center services, there are no easy solutions. Before age 21, Medi-Cal can cover medically-necessary private duty nursing through EPSDT. However, once the young adult turns 21, continued access to that care typically requires enrollment in the HCBA waiver. If the young adult is enrolled in Enhanced Case Management with a Medi-Cal Managed Care Plan (MCO), contact the case manager and request help. Medi-Cal MCOs have no legal obligation to cover private duty nursing care for adults, but if you make a case that the only alternative is placement in a nursing facility, they might be willing to authorize care on a time-limited basis to avoid paying for institutional care until a waiver slot becomes available.
The HCBS-DD waiver
Growing up can change how Medi-Cal coverage works, but in some cases child-based funding can still continue. If they’re still in school and living at home, young adults with disabilities are often able to stay on the HCBS-DD waiver without interruption. Concoff Kronbeck explains that if an individual is still in the household with their parents and still in school and being claimed as a dependent, they might be considered a child under Medi-Cal up to age 21. Concoff Kronbeck, explains, “They’ll still be considered a child by Medi-Cal for the purpose of determining household income, and so they’ll still need institutional deeming if they’re living at home with their parents and are still in school.” This means they’d remain eligible for the HCBS-DD waiver for that time.
If your child is receiving dependent benefits based on a parent's Social Security record, those benefits continue until they turn 19, as long as they’re still in school. After that, they transition to Disabled Adult Child (DAC) benefits, as Concoff Kronbeck explains.
DAC benefits, according to Disability Rights California (DRC), provide financial support to adults with disabilities whose condition began before age 22. These benefits are paid through Social Security Disability Insurance (SSDI) but are based on the parent’s work record, not the adult child’s. That means your child may qualify even without their own work history — a key difference from many adult benefits programs.
To be eligible, your child must be 18 or older, unmarried, and meet the Social Security Administration’s (SSA) definition of disability. In addition, at least one parent must be receiving Social Security retirement or disability benefits, or have passed away after working enough to qualify. If your child works, their earnings must stay below the SSA’s “substantial gainful activity” limit (in 2024, this is $1,550 per month, or $2,590 if blind, but typically the SGA threshold increases annually).
The SSA uses the same disability evaluation process for DAC as it does for other programs such as SSDI and Supplemental Security Income (SSI). This includes reviewing your child’s medical records and possibly requiring a consultative exam. According to Atticus, a legal assistance organization for disability claims, your child will need to provide strong evidence that they are unable to work due to their condition — and this must date back to before age 22.
If your child is already receiving SSI, their eligibility will be reevaluated when they turn 18 under adult criteria. But they may also qualify for DAC benefits at the same time, which can be a helpful addition. While it’s possible to receive both DAC and SSI, the DAC payment may reduce the amount of SSI your child receives — so it's important to keep an eye on income and resource limits.
DAC can also come with other benefits, including Medicare coverage (after a 24-month waiting period), vocational rehabilitation services, and job training. To apply, you'll need to fill out the SSA's Adult Disability Report (Form SSA-3368) and submit the application in person at your local Social Security office — online applications aren’t accepted for DAC
Once your child turns 18, they’re eligible to apply for SSI, which is another pathway to Medi-Cal coverage. This is a big deal because SSI looks only at your child’s income — not yours — which can make it easier for them to qualify. However, as Concoff Kronbeck notes, SSI takes time. This means you’ll want to start the process early to avoid any gaps in coverage.
But this process is a little different, and much easier, if your child is already receiving SSI. As Undivided Transition Consultant Nicole Morris adds, “Typically, until they are 18 to the day, SSI will consider the parent’s income, so this process cannot even start before 18. However, if the child had SSI at any point before 18, at 18 they don’t have to reapply; they just have to request a redetermination for SSI benefits.” Concoff Kronbeck adds, “If the child’s SSI was terminated due to financial eligibility and not a change in disability status, they should be able to request redetermination at age 18.”
Both Morris and Concoff Kronbeck recommend that SSI eligibility be established at some point during childhood if they ever qualify financially. One example that arises frequently is a child who has an extended hospital stay due to a lifelong disability, such as a baby with cerebral palsy who stays in the NICU for months before discharge, or a child with Down syndrome who has an extended hospitalization (at least one full calendar month) for leukemia treatment. For Social Security benefits, a disability needs to be something that either lasts at least 12 months or is terminal.
When a child resides in a hospital facility, parental income is not counted, so a child with no income or assets in his or her own name would qualify financially. The disability determination is made on the basis of the permanent disability, and the child would receive the institutional SSI rate during the hospital stay (usually a nominal amount — in California it’s a little over $60/month). However, the child would then be eligible for Medicaid on the basis of that SSI benefit. When the child returns home from the hospital, as long as there is no change to their disability and benefits are terminated because of parental income deeming, your child should retain the disability determination, and may qualify for Medicaid under some state programs based on that determination even if they no longer qualify for SSI payments.
California Children’s Services (CCS) is a state program that provides and funds diagnostic and treatment services to children under age 21 with CCS-eligible medical conditions.
Concoff Kronbeck explains that CCS services generally end at age 21. However, there’s an important exception for children receiving CCS through their school district. She further explains that, according to the “SERR (Special Education Rights and Responsibilities) manual from DRC Disabilities Rights California, if they’re receiving their CCS services through the school district, through their IEP, through the medical therapy unit, then that would continue until they’re out of special education, because it’s based on the age requirements of special education.”
So, while the typical cutoff for CCS is age 21, children receiving services through their school might continue to do so until they exit special education — which in California is typically at age 22. The key is how their IEP and medical therapy needs align with CCS services, which might give families extra time before transitioning out of CCS.
Let’s face it, the transition to adulthood can feel like a big leap — especially when it comes to healthcare. The key, according to Dr. Tirabassi-Mathis, is starting early and treating this shift like any other milestone. She describes it as “a developmental milestone.” For adolescents and young adults, preparing for healthcare transition is part of helping them grow into independent adults as they are developmentally able.
As Dr. Tirabassi-Mathis tells us, “The concept of healthcare transition, which is, again, preparing our adolescents and young adults to be as independent as they are able or ready to go to adult care, is not just about the young adult and the adolescent. It’s about the parents, and it’s about us. In the pediatric world, we develop very long-term relationships with our families, and there is a strong connection and trust that develops over years, and we recognize that this change is huge, and it’s hard for pediatricians to let go and say, ‘You’re 21, now we’re going to say goodbye.’ It’s hard for the health team members to let go. It’s hard for parents to let go . . . . It is a full team, and parents and young people are part of the health team, and so it’s important for all of us to recognize that this change is very monumental in the family’s life, particularly when kids have these long-term chronic conditions that they’ve been followed by the same doctors for years and years — we’ve seen them through kindergarten, graduating middle school, graduating high school, playing sports, just different milestones in their lives to celebrate. So we also want to celebrate the transfer to adult care as a graduation from pediatrics, because it really does speak to the advances we’ve made in our ability to take care of young people with chronic conditions, and it speaks to the parents and the care they’ve given their kids to get them through their very challenging situations.”
Dr. Tirabassi-Mathis also emphasizes that this is more than just good parenting advice — it’s a public health concern. A large portion of young people with special healthcare needs are surviving into adulthood, something that wasn’t as common in the past. As a result, there’s a need to prepare both families and the adult healthcare system for this shift. “We have to prepare the families, and we have to prepare the pediatric people, and we have to prepare the adult world to take on the care of these young people with childhood onset medical conditions,” she explains.
Actionable steps for parents and caregivers
When legal status shifts at 18
For some children, transitioning to adulthood involves more than just healthcare independence — it also raises important legal issues. Lobel highlights that when a child with significant disabilities turns 18, parents might no longer automatically be able to make decisions on their behalf. This is especially critical for children with severe intellectual disabilities or those who cannot communicate verbally. Lobel points out that in such cases, parents might no longer have the authority to speak for their child, which can feel like a loss of control. To prepare for this transition, parents should secure the necessary legal documents before their child turns 18. Lobel advises that parents consider getting a power of attorney for healthcare, which allows them to make medical decisions if necessary. She emphasizes the need to address these legal matters early, as it’s important to understand what changes will occur when a child reaches adulthood. These changes might vary in significance depending on the child’s specific needs. Read more about this in our article Medical Rights and Consent at Ages 12 and 18.
Building advocacy skills gradually
Even with the right support in place, preparing a child for healthcare independence is a gradual, individualized process — especially for those with developmental disabilities. The ability to self-advocate in a medical setting depends on a range of factors, including diagnosis, communication abilities, and emotional readiness.
As your child approaches adulthood, you may find yourself facing a tricky balance: your child might not be able to clearly express their needs or advocate for themself at the doctor’s office, yet once they turn 18, providers are legally required to honor their privacy and autonomy. This can feel like a roadblock, but there are ways to stay involved without defaulting to conservatorship.
One helpful approach she suggests is role-playing. Parents might practice with their child ahead of a visit by saying, “Let’s talk about what question you’re going to ask the doctor when you get there.” These kinds of rehearsals can boost a child’s comfort and confidence in speaking up during appointments.
Small, consistent steps — such as encouraging a teen to bring a written question to an appointment — can gradually build toward greater independence. Dr. Tirabassi-Mathis also recommends that teens begin having one-on-one time with their doctor around age 14. While this shift can be nerve-wracking for some parents, it’s a valuable opportunity for adolescents to get used to communicating about their own health. Research shows that youth who meet alone with providers earlier tend to have smoother transitions to adult care.
Helping children with extensive support needs be self-advocates
Still, some young adults will always need support in navigating medical conversations. For children who are nonspeaking or have significant cognitive disabilities, full independence might not be realistic — but that doesn’t mean they can’t participate. Lobel encourages parents to help their adult child create a list of concerns or symptoms before appointments. Even if the young adult can’t communicate them directly, this preparation gives providers a way to include them in the conversation and tailor care to their needs.
Lobel shares what it looked like when her neurotypical child turned 18: “When my neurotypical child reached the age of 18 and I took her to the doctor, she would have a chance to speak to the doctor without me in the room or do the exam without me in the room.” But for some children with more significant disabilities, she says, the day they turn 18 can feel like a sudden and jarring shift: “Suddenly, nobody’s minding the store, and nobody is able to speak on the child’s behalf.”
That’s why it’s important to take an individualized approach. Independence doesn’t have to mean going it alone — and advocacy can look different for every young adult. Some might be ready to speak for themselves with minimal support, while others might always need a partner in care. Either way, helping teens practice communication, ask questions, and understand their health needs can go a long way toward setting them up for more confident, empowered adult care.
Dr. Tirabassi-Mathis also shares that for a neurotypical child, “there are forms that we have patients sign when they’re 18 to say, ‘I am giving permission for this person’ — whether it’s a parent, a legal caregiver, an uncle, whatever — ‘to have access to my medical information.’ So in terms of some young people who have definite communication issues or have intellectual and developmental differences that they cannot communicate, we hope and try to help those parents gain some kind of legal assistance, which may give the legal caregiver or parent continued access for helping their youth with medical decisions and be part of their team with supported decision-making, as we refer to it.”
She adds, “We want young people to be in the least restrictive environment. Some people go right to guardianship and say, ‘Oh, I’ll take full guardianship,’ but there’s actually partial guardianship. There are young people that have what’s called shared decision-making. Perhaps, they aren’t be able to confidently make decisions based on insurance, for example, or serious medical decisions, so they give permission to their parents, and their parents have a legal permission from their youth that they are part of their decision-making team.”
A different system awaits
As Dr. Tirabassi-Mathis points out, the adult healthcare system operates differently from pediatric care. Adult care can feel more fragmented, and providers might expect more independence from patients. Because of this, she emphasizes the importance of starting with the end goal in mind — teaching kids to be independent and take care of themselves, while also supporting them as they transition into adulthood.
This isn’t just about knowing how to book an appointment or talk to a doctor. For children with special healthcare needs, it includes pairing those responsibilities with typical life skills, as they are able — such as doing chores, managing routines, or preparing meals. Dr. Tirabassi-Mathis affirms, “Our goal is to teach them and to help them become as independent as they are able [citizen and be able-delete] to take care of themselves.”
For more information, head to our articles What Is a Care Team? - How to Build and Coordinate Your Child’s Team (formerly How to Build a Care Team) and Medical Rights and Consent at Ages 12 and 18. And explore Dr. Tirabassi-Mathis’ recommended website, Got Transition®.
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