CHRT Health Policy Fellow Mark Peterson argues for more support for adults with cerebral palsy and other childhood onset disabilities
Dr. Mark Peterson, one of CHRT’s 2019 health policy fellows, is in Mayo Clinic Proceedings with “Cerebral palsy grows up,” arguing that more support is required for individuals with cerebral palsy (CP) and other childhood onset disabilities as they grow up.
The population of adults with childhood onset disabilities has increased significantly, writes Peterson. While there is very little research on this population, we do know that adults with cerebral palsy have shorter lifespans, mainly due to physical and psychological morbidities.
“While publication of more scientific research pertaining to the health of adults with CP across the lifespan will improve the state of the literature to inform evidence-based clinical practice, a more pressing issue is the complete lack of coordinated care and public assistance for this critical transition period [when children with CP become adults],” writes Peterson.
Peterson recommends that medical establishments develop systematic, coordinated care options for these populations.
In addition, he writes, “We must fund federal navigators with priority training to assist our young adults with disabilities and their caregivers… to identify the necessary health care coverage and medical specialists that children with disabilities who are transitioning to adulthood need.” Peterson emphasizes that these navigator groups should include people living with disabilities themselves.
“As people with CP and other childhood onset disabilities grow up, we have a unique opportunity and obligation to help them live well,” Dr. Peterson concludes.