Falling up 

17% children in the U.S. have a learning disability. What happens when they grow up and need an adult doctor? This question didn’t cross my mind until I met “Ava” and her parents while observing in Dr. Leppert’s developmental pediatrics clinic. At first, I didn’t suspect any disability. She laughed at jokes, got embarrassed by her dad, and answered questions like any other fifth grader. But when we performed the neuropsychological testing they came in for, her parents’ concerns about Ava falling multiple grades behind in school started to make sense. She couldn’t sort objects from big to small, struggled to arrange blocks to match an image, and wrote in blocky print with many reversed letters. As I listened to her parents ask Dr. Leppert question after question about what this meant for her future, I silently wondered the same.

At the end of our day together, Dr. Leppert turned to me, knowing I want to enter internal medicine, and said, “I just have one ask—can you care for these patients when they transition to adulthood?” She spoke about the 30-year-old patients with intellectual disabilities who were still in her clinic because they couldn’t find a primary care physician willing to accept them. Yet they too experience high blood pressure, diabetes, and high cholesterol like other patients their age; they still find themselves in surgery waiting rooms, emergency departments, and hospital wards. She worries how they’d be treated there—whether physicians will recognize their sometimes obvious, but often invisible barriers to understanding.

I thought back to all the patients I’ve encountered: the quiet clinic patient who only said yes or no in response to questions and often didn’t get the labs or tests we ordered; the admitted patient with intellectual impairment who often sobbed because she couldn’t understand what people were saying; the adult I tutored in fourth grade reading who had severe vision loss and lost sensation up to his knees due to uncontrolled diabetes. They had all fallen through the cracks of the healthcare system.

And then I thought of my brother, who has a learning disability and is several grades behind in reading and writing. My family has taken it one week, one month, one year at a time. But one day, he’ll have to go for 20-minute annual check-ups. Will the physician know that he has a short short-term memory, requires slower explanations, and nods when he’s unsure? The After Visit Summaries, printed handouts, and brief conversations with doctors won’t be enough for him, either.

It’s not on patients to record physician encounters to replay later or on their caregivers to take notes at every visit. And it takes more than developmental pediatricians keeping patients on their panel, med-peds physicians bridging the transition to adulthood, and primary care physicians making time accommodations. It’s on all of us to ensure every patient’s needs are met.

Perhaps the first step is recognizing these individuals—to see the Ava struggling with dates, notice the patient nodding blankly after an explanation. But awareness alone isn’t enough. Between when these patients leave the developmental pediatrician’s office and enter a geriatrician’s clinic, there should be providers equipped with time and resources to care for these patients. Whether it’s creating specialized clinics, incorporating developmental training into adult care, or offering extended consultations, we need to rethink our current system with their needs in mind. Because if nearly one in five children grow up to a healthcare system that is unprepared for them, it’s not just their problem—it’s all of ours.

Here are some steps we can take to better support patients in clinical practice: 

1. Recap

In addition to summarizing next steps, ask the patient to repeat important recommendations back to you. 

2. Reconceptualize

If a patient doesn’t appear to understand what you’re saying despite repeated efforts, ask how they learn best. Perhaps draw a diagram and/or use an analogy. I’ve seen makeshift props, educational videos, and other creative methods used to great effect. 

3. Recruit support

If you’re concerned about follow-through after the visit, ask if there’s a friend or family member that they’re close to who cares about their health. Ask if they would like them to be phoned into or invited to the next visit. 

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.