There is tremendous confusion about which organizations support cerebral palsy research and advocate for the CP community in the United States.
United Cerebral Palsy (UCP), is confusing advocacy and fundraising efforts for the US cerebral palsy community. More than five years ago UCP changed its mission and focus to address the needs and civil rights of the collective disability community. This is a critical initiative. However, their shortened name continues to reference the CP community. Some individual affiliates may have programming that has a particular focus on the CP community, but this is not part of their UCP's national mission, nor a requirement of their affiliates. Contrary to what people believe, UCP does not maintain any formal commitment to fund medical research within the US, nor do their federal advocacy initiatives specifically target the unique needs of the CP community. Several groups of people are trying to fill that huge gap, and UCP’s name is impeding our efforts.
Here is UCP's mission statment taken directly from their website: "UCP educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP works to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network that has helped millions."
UCP does fantastic work supporting the greater disability community. Much of what they do touches upon our cerebral palsy community and I am grateful for that. This petition does not criticize UCP’s work or ask for a change to its mission but I firmly believe their name should reflect their focus. Many parents have told me they thought that by donating to UCP that their money was going towards cerebral palsy research. Even though UCP doesn’t say that it is supporting research, the confusion is understandable. This is especially true since UCP used to have a foundation dedicated to cerebral palsy research. Since the change to UCP's mission statement in 2008, UCP and this foundation, now called CPIRF, are completely separate entities. They have no funding connection.
The US cerebral palsy community is working hard to organize and improve financial support to address the community's needs including beginning to investigate pain in our adult population, improving insurance coverage for pediatric and adult therapy, and working to secure federal money for researching CP at the CDC and NIH. Although cerebral palsy is the most common motor disability in children and we have an enormous adult population, our private organizations collectively raised just $1.2 million for the 2012 tax year (according to GuideStar). Individual chapters of UCP bring in as much money as the total NATIONAL amount of money which specific CP support organizations raised for CP medical research in the 2012 tax year (also verified on GuideStar).
At least one UCP affiliate already has changed its named. I commend UC2, formerly United Cerebral Palsy of Central Maryland for taking steps to change their name this year to accurately reflect their mission statement. I would like to see UCP National and all of its chapters to change their name. You can learn more about the Central Maryland chapter’s change here: http://www.uc2.org/about-uc2/letter-diane-coughlin
Michele Shusterman, mother of a young daughter with cerebral palsy, cerebral palsy community advocate, and founder of CP Daily Living.