#cyshcn

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Why is healthcare transition so hard?

One reason that there are so few supports to transition children and young with special healthcare needs children and youth with special health care needs from pediatric to adult medical care is structural ableism. As a society, we hope ALL children grow up and age out of pediatrics, but there are also (usually unspoken) assumptions that kids become independent adults who can recite their own medical histories, sign consent forms, talk on the phone to insurance companies, etc. Thus despite 3 decades of discussion about the need for formal processes, autistic young adults and their caregivers are largely left to fend for themselves. (2/2)

Image: Anika Meyer, Wikipedia

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Children and youth with special health care needs are 4x more likely to suffer physical abuse and 3x more likely to suffer sexual abuse. Especially as children with limited mobility grow taller and heavier, they are likely to experience innocuous bruising on their hands and feet during transfers into and out of their wheelchairs, and over boney prominences such as their lumbar spine based on positioning. However, bruises on soft areas such as the abdomen, breasts, and ears should always raise a red flag.

The American Academy of Pediatrics (AAP) has put out an excellent Peds in Review article on this important topic:

Brodie et alia, "Child Abuse in Children and Youth with Special Health Care Needs," Pediatrics in Review (2017); DOI: 10.1542/pir.2016-0098

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Children and youth with special health care needs (CYSHCN) comprise ~20% of the US population <18 years old and include almost 14 million babies born with birth defects, kids with trachs and/or feeding tubes, and teens undergoing cancer treatment. In September 2022, new guidelines were released to shape and improve their care.