What should high-quality cerebral palsy (CP) care look like, and how can healthcare programs ensure they are meeting the needs of people with CP and their families throughout life?

A new study conducted through the Cerebral Palsy Research Network sought to answer these questions by examining 11 leading CP programs across North America. Researchers explored how clinics are organized, what services they provide, and where significant gaps in care still exist. Their goal was to identify common elements of effective care and develop a practical framework that can help strengthen CP programs nationwide.

What aspects of care did most CP programs have in common?
The study found that despite differences in structure and resources, most established CP programs share several foundational components of care. These include:

• management of muscle tone,
• physical, occupational, and speech therapy services,
• access to mobility equipment and orthotics,
• orthopedic monitoring and surgery, and
• gait analysis to better understand movement patterns that affect function and participation.

Many programs also use multidisciplinary models of care that bring together specialists such as neurologists, orthopedic surgeons, therapists, and social workers to coordinate treatment plans. Some clinics have adopted “arena-style” visits, where multiple providers see a person during the same appointment, helping families receive more streamlined and coordinated care.
How did the CP programs included in the study differ?

At the same time, the study highlighted substantial variation among CP programs. While some clinics offer robust care coordination – a process to connect caregivers with services both internal and external to the hospital — and specialized services, others have more limited resources. As a result, the care available to a person with CP may vary significantly depending on where they live. The study team also identified several important gaps that persist even within well-established programs. Access to adult CP services remains limited, transitions from pediatric to adult healthcare can be challenging, and mental health, reproductive health, and sexual health supports are not consistently integrated into care. These findings emphasize that while CP is a lifelong condition, healthcare systems often continue to focus primarily on childhood services.

To help address these challenges, the researchers developed a checklist for centers consideration in their CP program that organizes services into three levels: foundational services that every program should provide, core services commonly available at most centers, and specialty services that may require advanced expertise or additional resources. This framework provides a roadmap for healthcare organizations seeking to strengthen CP programs and helps individuals with CP and families better understand the types of services they may need and can advocate to access.

For people with CP and their families, this study offers a valuable a tool for evaluating healthcare for people with CP. It serves as a roadmap for creating more consistent, comprehensive, and family-centered care across the lifespan. The framework can help families ask informed questions, advocate for needed services, and better understand what comprehensive care may look like.