Connect with others who understand.

sign up log in
About mySMAteam
SMA
NEWS

Young Adults With Disabilities Cite Pitfalls in Transitioning From Pediatric to Adult Care

Posted on January 04, 2022
Article written by
Megan Cawley
(Health Hub in Transition)

  • In a recent webinar, four young adults discussed transitioning from pediatric to adult health care while living with disabilities.
  • They discussed how this transition impacted different areas of their lives, including attending university and choosing their career paths.
  • Panelists agreed that successful transition isn’t about just changing doctors; it’s about securing quality care.

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.

Unmet Needs

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.

Time To Bridge the Gap to Adult Care

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.

A Sensitive Time for Transition

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.

Megan Cawley is a writer at MyHealthTeams. She has written previously on health news and topics, including new preventative treatment programs. Learn more about her here.

Recent news

Nobody loves going to the emergency room (ER). Odds are, something bad happened that requires...
Posted 01/20/2022

Emergency Room Advice for People With SMA

Nobody loves going to the emergency room (ER). Odds are, something bad happened that requires...
Posted 01/20/2022
Corrective surgery for scoliosis in children with spinal muscular atrophy (SMA) type 1 can lead...
Posted 01/18/2022

Scoliosis Surgery in Kids With SMA Can Cause Serious Complications, Research Finds

Corrective surgery for scoliosis in children with spinal muscular atrophy (SMA) type 1 can lead...
Posted 01/18/2022
Having a good doctor you can trust is a vital aspect of health care for everyone, but it’s...
Posted 01/13/2022

What Makes a Good Doctor for People With SMA?

Having a good doctor you can trust is a vital aspect of health care for everyone, but it’s...
Posted 01/13/2022
Andrew and Henry DeYoung, brothers with spinal muscular atrophy (SMA), completed doctoral theses...
Posted 01/11/2022

Brothers With SMA Complete Their Doctorates Weeks Apart

Andrew and Henry DeYoung, brothers with spinal muscular atrophy (SMA), completed doctoral theses...
Posted 01/11/2022
Nusinersen, sold as Spinraza, has been shown to prevent decline in breathing abilities in some...
Posted 01/06/2022

Breathing Remains Stable for Infants With SMA Type 1 Taking Spinraza, Study Shows

Nusinersen, sold as Spinraza, has been shown to prevent decline in breathing abilities in some...
Posted 01/06/2022
A recent study found that a wearable cyborg limb can be used to help people with neuromuscular disorders such as spinal muscular atrophy...
Posted 12/30/2021

Wearable Cyborg Limb Shows Promise as Walking Treatment for SMA

A recent study found that a wearable cyborg limb can be used to help people with neuromuscular disorders such as spinal muscular atrophy...
Posted 12/30/2021
A new study highlights the benefits of adaptive sports to improve the physical and psychological...
Posted 12/29/2021

Wheelchair Hockey and Other Adaptive Sports Score Big Health Benefits for People With SMA

A new study highlights the benefits of adaptive sports to improve the physical and psychological...
Posted 12/29/2021
Over the years I have pieced together a few strategies for dealing with the cold season when...
Posted 12/28/2021

Winter Safety Tips for People With SMA

Over the years I have pieced together a few strategies for dealing with the cold season when...
Posted 12/28/2021
With a newly earned degree in speech pathology, I began my career as a school-based speech...
Posted 12/23/2021

The Challenges of Working With SMA

With a newly earned degree in speech pathology, I began my career as a school-based speech...
Posted 12/23/2021
Pharmaceutical company Scholar Rock is seeking participants for a clinical trial of apitegromab,...
Posted 12/22/2021

Participants Sought for Clinical Trial of SMA Muscle Therapy Apitegromab

Pharmaceutical company Scholar Rock is seeking participants for a clinical trial of apitegromab,...
Posted 12/22/2021
SMA News

Become a Subscriber

Get the latest news about spinal muscular atrophy sent to your inbox.

Not now, thanks

Privacy policy
SMA News

Thank you for signing up.

close