Navigating the transition from pediatric to adult health care for conditions such as spinal muscular atrophy (SMA) can be challenging for young adults. In a webinar earlier this year titled “If I Knew Then What I Know Now,” young adults shared their experiences growing up with disabilities and highlighted how jarring the transition can be from a pediatric specialist to an adult specialist without sufficient guidance and resources.
During the webinar — hosted by Health Hub in Transition and Children’s Healthcare Canada — Alex Carey, Jessica Geboers, Sarah Mooney, and Jared Mullin joined moderator Karen Johnston to discuss what a successful transition from childhood to adult care means to them. Although each panelist lives with different disabilities and unique needs, they all had one common focus: accessibility of care.
Carey, a young man from British Columbia living with SMA type 2, described his experiences with a system where he did not fit in. Having graduated high school at 17, he was still a minor, yet he was forced to delay university because, as he explained, “the health care system didn’t know what to do with me.”
Carey underscored that his experience taught him that housing and care staff are equally important to continuity of care — a sentiment echoed by Geboers, who lives with cerebral palsy, and Mooney, who is living with medullary sponge kidney and other renal congenital malformations. They both spent years trying — without success — to find health care professionals informed and suited to meet their unique needs.
Mooney also highlighted the lack of guidance from health care providers throughout this transition, likening it to a chasm that she and others are left to cross on their own. Her solution? Bridge the gap.
“Imagine if we continued to guide the patient along their transition,” Mooney said. “Not until they’ve aged out of the pediatric world; rather, until the patient has fully and really feels like they’ve connected safely on the other side.”
Instead of sending young people on their way with pamphlets, websites, and a lack of clear instructions, Mooney said the best way forward would be to build bridges between the worlds of pediatric and adult care, helping provide individuals with consistent, quality care as they mature.
The panel helped shine a light on the need for continuity between care, information, and resources for those living with disabilities. In some cases, like Mooney’s, doctors do provide all the necessary resources before transitioning a person to adult-level care. However, young people still require support and guidance in finding accessible clinicians, building trust, and managing their own health.
Read tips from Dr. Jonathan Strober about transitioning to adult care for SMA.
Mullin, who lives with ulcerative colitis, had a negative experience with adult care at a young age, which impacted him for years after. He described how his transition from pediatric care encouraged him to be the resource he wished he’d had.
“It really highlights for me how sensitive a time transition is for youth, and how much of a difference can be made in people’s health, their lives, and the lives of their loved ones if the transition is done well,” said Mullin. “It’s something I’m very passionate about.”
The panel concluded that resources — especially for those transitioning from pediatric to adult care — are a vital part of health care for those with disabilities. Making these resources more widely available and providing more guidance throughout the transition from pediatric to adult health care are vital steps to helping people with disabilities receive the care and support they need.