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.

    Dog-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.