The Impact of Aging with Cerebral Palsy–A UCPA Hawai’i International Survey

MAHALO FOR ALL OF THE SUPPORT! DATA COLLECTION HAS ENDED AND WE HAVE BEGUN TO LOOK AT THE DATA. PLEASE KNOW THT YOUR VOICES WERE HEARD AND WILL BE SHARED. 

Today we offer a very special Amazing Monday and big mahalos to the 44 Amazing people from 5 countries and at least 18 states who responded to our Aging with Cerebral Palsy study. Data collection is now closed and we have begun sorting through the data. Your courage in sharing your experiences will help us advocate for the issues shared. Again, many mahalos. You are all Amazing!

This study has been APPROVED by the University of Hawai’i Internal Review Board.

You may contact the UH Human Studies Program at 808.956.5007 or [email protected] to discuss problems, concerns and questions, obtain information, or offer input with an informed individual who is unaffiliated with the specific research protocol. Please visit http://go.hawaii.edu/jRd for more information on your rights as a research participant. 

The United Cerebral Palsy Association of Hawai’i is dedicated to providing needed early intervention services to our keiki from birth to three years of age. We are also devoted to understanding the increasing needs of people aging with cerebral palsy. We’re proud to announce that our groundbreaking research study, The Impact of Aging with Cerebral Palsy, has been officially begun! MAHALO to UCP National for the incredible support! See the blog HERE!

We will update this page as the data analysis progresses and alows.

Here is a brief look at the study’s foundation:

“The CDC notes that cerebral palsy (CP) is the most common motor disability in childhood, with 1 in 345 children affected. (CDC, link). Katsma et al. (2024) observed: “Due to improvements in early care for premature infants, there are now more adults than pediatric patients with CP (link).” While CP is often called ‘non-progressive,’ that only refers to the brain lesion—not the physical toll over time. Adults with CP can experience increased spasticity, pain, fatigue, falls, isolation, and more. Studies show that people with CP use three to five times the energy of individuals without CP to complete daily tasks. (Holland, 2018, link)” We will formally launch with a blog on the National United Cerebral Palsy Association website. We will add that full blog and a link/QR Code to the first survey when it is published.

Meet Our Research Team

We’re honored to introduce the outstanding researchers leading this initiative—they all have extremely professional and personal interests in these studies:

Dr. Stephen Dantzig – A retired school psychologist, educator, and longtime UCPA board member, Dr. Dantzig brings both professional expertise and lived experience, as someone aging with cerebral palsy himself. His role as our Education and Outreach Program Manager adds a vital layer of authenticity and dedication to this work. Dr. 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 pina bifida. He recently retired from his position of Leeward District School Psychologist for the State of Hawai’i after 20 years. He was a School Psychologist for 38 years serving New York, New Jersey, California and Hawai’i. He began his career as a volunteer working with children with severe autism in 1980 and has worked with children with severe disabilities, including Cerebral Palsy, for 44 years. He was a graduate school professor for ten years and authored 15 books and well over 100 articles on photography. His autobiography was Get Up, Your Bus Is Here: Living MY Life with Cerebral Palsy: Trials, Tribulations and Triumphs (available to read FREE HERE). Therein lies his personal interest in this study. A combination of his favorite stories from this volume is that he lost one cane on the top of the Hunter Mountain Ski Resort in New York and the 30 years later lost a cane in the rough surf of Sandy Beach on the East Coast of O’ahu. He now relies on an electric wheelchair for most of his mobility outside of his condominium in Waikiki. He also possibly experienced a mild concussion from a recent fall in his condo. Stephen was the keynote speaker at one of the Center for Disease Control “Cerebral Palsy Day” festivities in Birmingham, Alabama in 2012. He was on the Board of Directors of United Cerebral Palsy of Hawai’i for ten years before a spinal fusion surgery at the 4th and 5th lumbar vertebrae temporarily curtailed his activities. He has also undergone four major surgeries in his lifetime directly or potentially related to Cerebral Palsy.

Dr. Joy Mahiko – An Assistant Professor at UH-West O’ahu, specializing in Special Education with a strong track record in disability research, Dr. Mahiko’s work is grounded in inclusive methods that honor the lived experiences of those often left out of traditional research. 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.

As a former special education teacher and coordinator in workforce development, Joy gained invaluable insights into the unique perspectives of children and adults with disabilities. Their lived experiences and resilience have inspired her commitment to foster dignity, choice, and independence for all individuals, creating a more inclusive society where everyone can contribute and thrive.

Her professional and personal dedication aligns closely with the mission of United Cerebral Palsy, emphasizing the importance of breaking barriers and empowering individuals with disabilities to live life without limits.

Mr. Brian Kajiyama, M.Ed. – An inspiring educator, speaker, and advocate, Mr. Kajiysma lives with cerebral palsy and uses augmentative communication and a power wheelchair. His voice is essential in shaping this study to reflect the realities and dignity of those living with CP. Brian is an instructor in the Department of Special Education at the University of Hawai’i Mānoa campus. He earned his Master’s Degree in Vocational and Rehabilitation Counseling from the University of Hawai’i in 2007. Brian has been active within the Department of Special Education at the University of Hawai’i at Mānoa for over 20 years. Brian’s 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. Brian and his students have long been visible volunteers at United Cerebral Palsy Hawai’i fundraising events. His outside interests include video poetry and the University of Hawai’i football program.

Our team also includes the incredible support of Mr. John Nishida, Executive Director of UCPA Hawai’i and our wonderful staff. We also express our “mahalos” to the National United Cerebral Palsy Association for their amazing support for this project. 

MAHALO!