Lakiesha Johnson, direct support coordinator, assists Grace Feazelle in getting ready to eat lunch while Toni Blair, direct support staff, works in the kitchen at Feazelle’s apartment in Norfolk, Va., on April 23, 2025. Feazelle has cerebral palsy and lives independently with help from caregivers who are paid by Medicaid. (Kendall Warner/The Virginian-Pilot/TNS)
For decades, cerebral palsy resources have focused on the needs of children, but with a new toolkit, that could be changing.
The 172-page document is being billed as the “first comprehensive” guide for adults with cerebral palsy.
The “Adult CP Toolkit” touches on everything from the practicalities of transitioning to adulthood — like finding housing and caregivers — to self-advocacy, mental health, intimacy and managing nutrition, sleep and functional decline.
Advertisement – Continue Reading Below
The guide is three years in the making, according to the Cerebral Palsy Research Network, which is behind the effort. The nonprofit, which emerged from a 2014 National Institutes of Health meeting, is a collaboration of hospitals and community members focused on improving outcomes for those with cerebral palsy.
There are more than 800,000 adults with cerebral palsy in the U.S., the nonprofit said, and the toolkit is aimed at guiding them, their caregivers and health care providers.
“As the parent of a young adult with CP, I have spent years searching for the best care and support for my daughter,” said Michele Shusterman, cofounder of the Cerebral Palsy Research Network and project manager for the toolkit. “Now, as my daughter begins adulthood, I am grateful for all of the wisdom and practical insight this resource contains to empower her generation and those who follow.”
The guide is available as a free download or printed copies can be purchased.
Read more stories like this one. Sign up for Disability Scoop’s free email newsletter to get the latest developmental disability news sent straight to your inbox.
