When Your Child with Special Needs Should Say Goodbye to the Pediatrician

When Your Child with Special Needs Should Say Goodbye to the Pediatrician

Among the many transitions your child will make, leaving a pediatrician and switching to adult health care may be one of the most important. Follow our plan for easing the change.

    doctorDog-eared parenting magazines and board books are scattered everywhere, along with an assortment of mismatched blocks, pull toys, and a tot-sized activity table likely covered in drool and germs. One mother hovers in the corner trying to keep her swaddled baby quiet while filling out forms; a couple, the innocent wonder and sleep-deprived glaze of new parents written all over their faces, sits, anticipating their turn; and school-aged kids, occupied by mobile devices, headphones, and homework, wait beside their parents. The warm environment of your pediatric office, even on the busiest of days, is familiar and comfortable. Patients, regardless of age, are always accompanied by an adult.

     Is your own primary care physician’s waiting area quite so cozy? It likely feels more industrious, set up for efficiency and order—welcoming, sure, but colder somehow. Can you imagine your child—with his array of diagnoses and sensitivities and discomfort with change—there?

“Having established a long and trusting relationship with a pediatrician who is thoroughly familiar with their history and medical needs, individuals with special needs—who often find change difficult—may be understandably reluctant to make the transition to a new provider with whom they would have to reestablish a new relationship of comfort and trust,” says David Kaufman, M.D., medical director of YAI Center for Specialty Therapy and founding medical director of Premier HealthCare, a member of the YAI network.

Nearly half a million children with special health care needs enter adulthood in the United States each year. As individuals progress from adolescence to adulthood, they undergo a variety of physical, emotional, and psychological changes, which make a transition to adult healthcare more beneficial to their long-term well-being. Your pediatrician is specifically trained to care for infants, children, and teens. “Children are not little adults,” Dr. Kaufman says. “As they get older, they take on medical issues which are more prevalent in adults, such as hypertension, heart defects, adult-onset diabetes, obesity, inflammatory bowel syndrome, HIV, and AIDS.” These are best treated by an internist or a family practitioner, who can see patients continuously from about age 7 into adulthood.

Yet, in too many cases, families stay with the familiar for too long. Not only are you doing your child a disservice medically by keeping him in pediatric care past the age of 18, but you are also not empowering him to psychologically adapt. It is far from normalizing for a 22-year-old to sit alongside toddlers amidst Elmo and Legos in the pastel-colored waiting room of his doctor’s office.

For any child—and any parent, for that matter (who has grown accustomed to late-night phone calls and reassurances over the years)—transitioning to adult medical care can be daunting. Beginning the transition early is key, doctors advise. Follow this advice to help steer your child in the right direction.

  • Encourage your child to be autonomous during doctor visits.

Gradually empower her over the years. At whatever age your child is developmentally ready, allow her to sign herself in to medical appointments. Walk her through calling in prescriptions and managing her meds—and if her disabilities make that impossible, involve her to the extent that is possible. When in the exam room or a doctor’s office for a consultation, encourage your child to sit next to the doctor, and ask the doctor to make eye contact with your child; the more direct communication that happens in your presence in a pediatric setting early on, the better your child’s transition to adult care will eventually be.

Parents and the pediatrician should work together with children transitioning into adolescence to teach them to speak up and begin to make decisions for themselves,” advises Dr. Kaufman of individuals who are verbal and communicative. “Once kids are about 15 or 16, most pediatricians will see the patient without the parents in the room, anyway, to ask questions they can’t in front of the parents—about sex or alcohol, for instance,” Dr. Kaufman says. “So kids at that age start to learn that they are able to make decisions and have confidential conversations and trust their physician.”


  • Find the right doctors to take on your child’s adult care.

This, of course, is a biggie. Your pediatrician, at this point, feels like a member of your family. But remember what it was like when you were choosing him to take on care of your precious newborn? Now you know your child’s diagnosis—which will likely make it more challenging to find a doctor comfortable and equipped to deal with his special medical needs.

Begin your search during your child’s early teen years. Ask for referrals from any of your child’s therapists—who have likely been entrenched in the special needs world and are well-connected—and from parents of your child’s classmates, as well as from your pediatrician. It’s important to tap into the vast network of people you have met in the special needs community over the years, particularly if your pediatrician does not have an adequate referral at hand: Think of the families you know from your child’s after-school activities, camps, respite programs. Consider asking your own primary care physician if she would be willing to take on a patient with your child’s special needs, or if she may have a recommendation of another doctor in the community.

Consider that the environment of a medical office should contribute to your decision as well. “The person at the front desk is the entrée into the office,” Dr. Kaufman says. “If the person at reception is angry or rude, that’s not setting a good tone.”
And understand that the first doctor you choose may not be a great fit; that’s okay.
See “Choosing the Best Doctor for Your Child” at right for specific questions to ask a prospective doctor and for other helpful advice on finding the right fit.

  • Bridge the gaps. 

In a position paper on “Health Care Transitions for Young Adults with Special Health Care Needs,” the American Academy of Pediatrics defines the goals of successful transition as providing “high-quality, developmentally appropriate health care services that continue uninterrupted” as a child grows to adulthood. Continuity of care is critical.

“It is helpful if your pediatrician communicates with the new provider prior to a patient’s first visit,” suggests Dr. Kaufman, who says that in planning for the transition, parents should consult with the pediatrician, the agency that provides services for their child, and all the resources that may be available to them. “The patient should be involved in the process to the greatest extent possible,” he says. “Indeed, to help build trust, it would be necessary for the patient to meet with the adult provider prior to the transition.” 

Upon introduction to a new medical practice, assist your child in communicating to her new doctor what has made her comfortable in her old setting—and be as specific as possible. “Behavioral prompts are key. Parents have direct experience with their child and know how to handle him or her in various situations—so let a doctor know that if he is going to give your child a vaccination, for example, to warn you so that you can either hold your child or advise the nurse on the most effective way to do so to avoid an overwhelming response from your child,” Dr. Kaufman says. If your child is sensitive to touch, you may say to the doctor in advance of the first visit: “My child doesn’t like being touched by strangers, so when you first meet her, please don’t shake her hand or put your arm on her shoulder—just say hello and let her get comfortable knowing you.” If your child flaps a lot, prepare the office staff beforehand to let them know that his flapping is indicative of stress or anxiety so that they do not overreact to his excitement in the waiting room should it occur. “Medical records are cut and dried, whereas a new doctor will get a different type of helpful information from a parent,” Dr. Kaufman says.

At least initially, help your child manage her scheduling. A 2005 report in Pediatric Child Health (tellingly entitled “Exploring a Black Hole: Transition from Pediatric to Adult Care Services for Youth with Diabetes”) found that 31 percent of transitioning adolescents with diabetes* had a lapse of greater than six months between their last pediatric visit and their first visit with an adult health care provider; moreover, 11 percent were completely lost to follow-up. And because adult physicians are not typically as accessible as pediatricians and the waiting period between adult appointments tends to be longer, it can be all too easy for your child to fall off a regular schedule of medical check-ups.

  • Appoint your child captain of his own ship.

As early as is feasible, your adolescent should understand his own baseline symptoms. He should carry his own insurance card, in addition to a list of his medications, his pharmacy phone number and location, and the contact information for everyone on his medical team. The level of individualized and coordinated care that is considered normal and expected in the pediatric setting changes—often dramatically—in an adult setting. Doctors expect adult patients to come to appointments with basic knowledge of their own conditions.

In March 2007, the AAP joined with other medical organizations to adopt a treatment philosophy known as Family-Centered Medical Home (alternatively Patient-Centered Medical Home), of which a main principle is that the primary care physician is the systems navigator—meaning your PCP serves as a point person for coordinating care and follow-ups after specialist appointments. But while it is the doctor’s responsibility, to oversee care from a broad perspective, as your experience to this point has likely shown you, there will always be a need for self-advocacy—and the more informed your child is about his own conditions and needs, the better.

  • Accept that your role as advocate endures into your child’s adult years.

Less than 50 percent of youth with special health care needs in our country receive the health care transition supports and services they need, according to the 2009-2010 National Survey of Children with Special Health Care Needs. Study after study has pointed to inherent limitations in our health care system. A report in the Journal of Adolescent Health indicates that “the limitations of the health care system itself” create barriers that prevent “collaborative, coordinated, and integrative services to adolescents with chronic or disabling conditions.”

You will undoubtedly help your now-adult child select a new primary care physician once she has outgrown her pediatrician. You’ll help her schedule her first appointments and maybe even accompany her to an initial meet-and-greet with the doctor, getting her acclimated to the new environment and individual before undergoing an actual exam at the next visit—“ease into it,” as Dr. Kaufman says.
You’ll even—and this won’t come as a surprise—continue to help teach acceptance. “The biggest challenge for doctors in the community is being comfortable treating adults with special needs. Being able to accept this person who’s ‘different’ as a person—as opposed to, say, a person with Down syndrome. You want a doctor to think, This is Johnny—he’s a great kid, and look at what he can do. It’s about changing people’s perceptions,” Dr. Kaufman says.

Over time, your role as advocate will change depending upon your child’s abilities. If your child’s special needs allow for greater independence, you will become more of an advisor than a full-time caregiver—and that, as they say, is a good thing.

  • Learn to let go, even just a little at a time.

“The biggest challenge for parents is letting go,” Dr. Kaufman says. “We always—all of us—have trouble letting go of our kids. They are growing up and they’re out there making their own mistakes.” This process is generally even more daunting for a parent of a child with special needs, who has been so incredibly involved—entrenched, even—in their child’s welfare since the moment of diagnosis. “I see that all the time. I see kids who are in their 20s, and I start talking to the parents: ‘Don’t you think it’s time to start thinking about residential or day programs?’ But they are resistant. In those cases it’s not about whether their child is ready—they’re not ready. To try to say ‘goodbye and good luck’…it’s not easy. But we have to let them do their thing.”

Questions of Guardianship

When your child turns 18, he’ll legally have the right to make decisions for himself, including those related to his health care. As an adult, he’ll be required to see the doctor alone, have sole control over his medical records, and make the call when it comes to treatment options from medication to surgery. “This is one of those things that sneaks up on parents,” says Bernard Krooks, J.D., a founding partner of the law firm Littman Krooks LLP, which has offices in White Plains, Manhattan, and Fishkill. “Before they know it their kid is 18, and under the law…an 18-year-old is presumed to have capacity to make medical and financial decisions for themselves unless proven otherwise.” If your child cannot make these decisions because of a developmental disability, there are two options that can either take away or limit his rights to decision-making and assign that responsibility to you or another qualified individual.

• A Health Care Proxy, sometimes referred to as a “health guardianship,” is best for high-functioning individuals, says Krooks, a past president of the Special Needs Alliance. A Proxy allows the individual to maintain authority over health care decisions but allows the parent or designated agent to participate in treatment choices or take over the responsibility completely if the individual loses the ability to make decisions. The individual can control how much authority to give to the agent, allowing him or her to make all health care decisions or only certain ones. The agent is allowed into the exam room and may have access to the individual’s medical records.

• Legal guardianship should be pursued by parents of a lower-functioning individual who is unable to make decisions for herself. If a legal guardian is appointed, law dictates that the individual is not able to make decisions for herself and the guardian has complete control over all medical decisions. Krooks recommends starting the guardianship process when your child turns 17.

• A successor guardian should also be appointed if you pursue legal guardianship, Krooks says. “If something happens to you, you should have another adult who can take over for you. He or she will have to qualify, and the court will go through a vetting process to make sure they’re able to serve as a guardian.”

• A letter of intent is another critical document. “In this day and age, it’s likely the parent will pass away before the child with disabilities does, so you want to make sure the future guardian is aware of your wishes for your child in respect to their health care treatment,” Krooks says. “A letter of intent is like a road map for them.”

Find a detailed outline for your letter of intent here. Get more tips about legal guardianship and health care proxies—including when and how to apply—at nyspecialparent.com/proxy.

Click here for tips and tools on how to choose the best doctor for your child.