For years, cerebral palsy has been treated as a childhood disability. However, cerebral palsy is a lifelong disability. More than 800,000 adults in the United States live with CP, and many have faced adulthood with few resources. That is beginning to change.
A new 172-page guide called the Adult CP Toolkit is described as the first comprehensive resource designed specifically for adults with cerebral palsy. Developed over three years by the Cerebral Palsy Research Network, the toolkit offers practical guidance on housing and caregiver support, mental health, intimacy, nutrition, sleep, and managing functional decline.
The Cerebral Palsy Research Network is a nonprofit organization that emerged from a 2014 National Institutes of Health meeting. It brings hospitals, researchers, and community members together to improve outcomes for people with CP.
Michele Shusterman, cofounder of the network and project manager for the toolkit, shared her personal connection to the project. Her daughter has CP. Shusterman spent years searching for the best care and support for her daughter.
She described the toolkit as a source of wisdom and practical insight that can empower her daughter’s generation and those who follow. This guide is not just for individuals with CP. It is also intended to support caregivers and healthcare providers who often lack the training and resources to address the needs of adults with cerebral palsy.
As someone who has lived with cerebral palsy for nearly 26 years, I know firsthand how difficult the transition to adulthood can be. Cerebral palsy is the most common cause of childhood disability in the United States, but once I turned 18 in 2017, I was forced to navigate uncharted territory. I was suddenly an adult with the same disability, but without the support systems I had relied on.
After graduating from high school, all of my school-provided services ended. I lost my biweekly physical therapy sessions, which led to increased muscle tightness, pain, and joint stiffness. Two years passed before I was able to resume PT.
Physically, adulthood has been challenging. While cerebral palsy does not progress in the traditional sense, it does change with age. I began noticing shifts in my movement and function during adolescence.
At 13, I decided to get a power wheelchair due to increased fatigue and changes in my mobility. I also began experiencing chronic pain and worsening spasticity. Slowly, I lost abilities I once had, like crawling on my hands and knees or using forearm crutches.
At 22, I was no longer eligible to receive care at Boston Children’s Hospital, where I had been a patient since I was ten. Losing access to a team that understood my condition was a major blow. Adults with cerebral palsy still need specialized care, but too often, the system is not built to provide it.
Mark Peterson, a professor of physical medicine and rehabilitation at The University of Michigan Medical School, has echoed this concern. In an essay published in The New England Journal of Medicine, he argues that treating cerebral palsy as a pediatric condition leads to inconsistent care for adults living with the condition. His work highlights the urgent need for a shift in how the medical community approaches CP across the lifespan.
The Adult CP Toolkit is a step toward changing that reality. It offers not just information, but validation. It acknowledges that adults with CP exist, that our needs are real, and that we deserve care that evolves with us.
There are thousands of adults in the United States just like me. They too are navigating life with CP. They are facing the same gaps in care and understanding.
A young man from Concord, NH, named Samuel Habib, used his passion for filmmaking to show people what navigating adulthood with cerebral palsy really looks like. The Ride Ahead, which Samuel co-directed with his father Dan Habib, offers a powerful look at the transition to adulthood for disabled adults. Through candid interviews with disability advocates like Judy Heumann, Ali Stroker, and Maysoon Zayid, Samuel asks questions about dating, independence, and self-advocacy, issues often overlooked in traditional care.
His journey reflects the same challenges the Adult CP Toolkit addressed, and his message is clear. “You are not alone. Find your community.” The film’s national debut marks a cultural milestone in recognizing that disability doesn’t end in childhood. It evolves, and so must the support systems around it.
Children with cerebral palsy grow up and become adults with cerebral palsy. Cerebral palsy doesn’t disappear on someone’s 18th birthday. People with cerebral palsy need support regardless of age.
Sources:
Blakemore, Erin. “Why One Expert Says It’s Time to Redefine Cerebral Palsy .” The Washington Post, WP Company, 30 Nov. 2024, http://www.washingtonpost.com/wellness/2024/11/30/cerebral-palsy-lifelong-adult-disability/.
Heasley, Shaun. “Group Looks to Improve Care for Adults with Cerebral Palsy.” Disability Scoop, Disability Scoop, 5 Sept. 2025, http://www.disabilityscoop.com/2025/09/05/group-looks-to-improve-care-for-adults-with-cerebral-palsy/31609/.
Habib, Samuel and Dan Habib, directors. The Ride Ahead. The Ride Ahead, LikeRightNow Films , 24 Apr. 2024, https://youtu.be/oMkdjTW5Zvc.
Peterson Mark D. ‘Reframing Cerebral Palsy as a Lifelong Physical Disability’. New England Journal of Medicine, vol. 391, no. 18, Massachusetts Medical Society, Nov. 2024, pp. 1668–1670, https://doi.org/10.1056/NEJMp2403366.