Many “MAHALOS” to the United Cerebral Palsy Association for the incredible support for our extremely important project (Mahalo Sarah!). Mahalo also to our amazing team of researchers and the backbone of everyone at UCPA Hawai’i for, well, everything from the work you do for our keiki and for standing behind us on this project. It has been nine months of intense research, collaboration and work to get to this point, but it is now a reality. Mahalos also to the University of Hawai’i Internal Review Board for carefully reviewing and approving the project.
The Impact of Aging with Cerebral Palsy
By Stephen A. Dantzig, Psy. D., Brian Kajiyama, M.Ed., and Joy Mahiko, Ph.D.
The impact of aging with cerebral palsy (CP) is not just academic for us — it’s personal. We are in the early phases of a project aimed at researching this very issue. As professionals and individuals with CP, we understand the importance of raising awareness and driving actionable change.
Cerebral Palsy Is Not Just a Childhood Disorder
According to the Center for Disease Control, CP is the most common motor disability in childhood, affecting 1 in 345 newborns. Thanks to early intervention and improved medical care, more individuals with CP are living into adulthood than ever before. Yet, the condition is still largely treated as a childhood disorder, creating a critical gap in adult care and research.
The Myth of Nonprogression
Cerebral palsy is generally known as a nonprogressive condition and that is partially true. The lesion in the brain does not progress, but the fact is that mobility decreases dramatically as we age. A common statistic: “People with CP use three to five times the energy of people without the disorder to complete everyday tasks.”
The result is a significant increase in spasticity, ataxia, athetosis, pain, social isolation, depression, anxiety, and more. Boiled down: this increased effort accelerates wear on the body. Furthermore, falling and the fear of falling has a negative impact on adults with CP.
The High Financial Cost of Living with CP
There are also significant financial costs to society related to the physical needs of those with CP. What and where are the resources available to people with CP and other disabilities, especially as they experience the advanced effects of aging? The data is daunting: “Stable incidence rates in combination with increased life spans underscore the growing need to understand how the effects of CP unfold at different ages and stages across the life course. Despite this need, CP is often characterized as a disorder of childhood, with most research and health care services to date focused on meeting the needs of children and adolescents with CP, with much less attention given to adults.”
The Gap in Adult CP Healthcare
Further, this article explains, “Advancements in healthcare services over the past decade have resulted in lower mortality rates and increased the average life expectancy of people with cerebral palsy. However, once they transition from adolescence to adulthood, limited federal and community resources, and health care professionals’ lack of expertise present significant obstacles to achieving quality healthcare and long-term benefits.”
The same article references a review paper in 2023 that identifies “53 chronic conditions, of which many were modifiable and preventative risk factors among adults with CP.” Although medical advancements have improved, adults with CP face myriad health decisions that impact their physical and mental well-being, and thereby, quality of life.
In addition, while adults with CP have a similar life expectancy to those without, the financial impact of having this disability is significantly higher. The average lifetime cost in the United States is $1.2 million per person. This includes direct medical expenses as well as indirect costs like lost productivity and nonmedical costs associated with care.
Stephen’s Story: Living with CP as an Adult
The increase in spasticity and decrease in balance create very real concerns about injuries due to falls. Increasing the use and or strength of assistive devices may help. As someone with CP, I have personally gone from using one cane to walk to using a rollator walker in his home and a power wheelchair outside of the home. Assistive communication devices can be a great help if communication is becoming more difficult.
Fatigue is real. As stated previously, people with CP use 3 to 5 times the energy to complete everyday tasks than someone without. It’s important to stay mobile, and that means move or have someone move you to keep the muscles as strong as possible. Always consult a physician to know how best to approach this. It’s important to pace yourself and recognize that it is getting harder to do things. Take breaks.
Acceptance is a huge factor and one that I work on every day. Prioritize mental health. I taught counseling and psychotherapy techniques for about ten years. Trust me, it is harder to be the one who needs to keep the emotions in check. Right now, I am working every day on meditation techniques.
Don’t isolate. It is very easy to get and stay in your own world. Interact: either in person or with apps like Zoom.
Finally, and most controversial (and one that I am in no way qualified to comment on), there may be medical interventions that could help with the muscle control, but that is a discussion for you and your physician.
Ongoing Research: Help Us Make a Difference
There is clearly a humanitarian need to continue to research the effects of, and potential interventions, for those who are aging with cerebral palsy. The authors of this article have launched a study about aging with cerebral palsy. If you or someone you care for has cerebral palsy, we encourage you to take the first of three surveys on this very important topic.
About the Authors
Dr. Stephen Dantzig earned his Doctor of Psychology degree from the Rutgers University Graduate School of Applied and Professional Psychology in 1991. His dissertation studied the development of higher cognitive functioning of children with cerebral palsy and spina bifida. He was a school psychologist for 38 years serving New York, New Jersey, California and Hawai’i and is now the Education and Outreach Program Manager at the United Cerebral Palsy Association of Hawai’i. His autobiography was Get Up, Your Bus Is Here: Living MY Life with Cerebral Palsy: Trials, Tribulations and Triumphs. Read more about Stephen here.
Brian Kajiyama is an instructor in the Department of Special Education at the University of Hawai’i Mānoa. He earned his master’s degree in vocational and rehabilitation counseling from the University of Hawai’i in 2007. He has cerebral palsy and uses a power wheelchair for mobility and augmentative communication devices to interact with his students and peers. His advocacy and work with and for individuals with disabilities, including the use of augmentative communication devices, are evident in his long list of journal publications and conference appearances.
Dr. Joy Mahiko, is an assistant professor at UH-West O’ahu, specializing in special education. She earned her Ph.D. from Capella University. With a focus on inclusivity and quality teacher preparation, her work centers on improving the quality of life for individuals with disabilities through enhanced inclusion to thrive in their communities. Her work also extends to advocating for fair wages, equitable access, and greater independence for individuals with disabilities.