United Cerebral Palsy National (UCP) : Remove references to cerebral palsy from your name to end confusion among donors/families.
  • Petitioned Stephen Bennett, President and CEO

This petition was delivered to:

United Cerebral Palsy National
Stephen Bennett, President and CEO

United Cerebral Palsy National (UCP) : Remove references to cerebral palsy from your name to end confusion among donors/families.

    1. Michele Shusterman
    2. Petition by

      Michele Shusterman

      Greenville, SC

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

Sincerely,
Michele Shusterman, mother of a young daughter with cerebral palsy, cerebral palsy community advocate, and founder of CP Daily Living. 

To:
Stephen Bennett, President and CEO, United Cerebral Palsy National
Remove the "CP" in the UCP name to end confusion among CP donors/families.

Sincerely,
[Your name]

Recent signatures

    News

    1. UCP Affiliates Continue to Change their Name

      Michele Shusterman
      Petition Organizer

      The following United Cerebral Palsy affiliates have elected to change their names to accurately reflect the broader UCP mission they have adopted and aligned their programs with. Please share the United Cerebral Palsy name change petition and support the example these affiliates have set:

      1. Ability Connection Texas-formerly UCP of Dallas County
      2. UC2 Central Maryland-formerly UCP of Central Maryland
      3. Sunrise Group-formerly UCP Southwest Florida
      4. Ability Connections-formerly UCP of Oklahoma
      5. Queens Center for Progress-formerly United Cerebral Palsy of Queens,
      6. CLASS (Community Living and Support Services)-formerly UCP CLASS

      Thank you!
      Michele

    2. John Quinn, Author of "Someone Like Me" supports this petition

      Michele Shusterman
      Petition Organizer

      John Quinn is a retired naval officer, motivational speaker and disability advocate. His autobiography details his experience of hiding the fact that he had cerebral palsy during his 20 year military career. Check out Mr. Quinn's video blog supporting the UCP name change:

      http://www.youtube.com/watch?v=jjclJhrKwsM

      United Cerebral Palsy Should Change Their Name

      John W. Quinn, a retired Senior Chief Petty Officer and author of Someone Like Me, An Unlikely Story of Challenge and Triumph Over Cerebral Palsy, thinks its time for the United Cerebral Palsy Foundation to change their name. www.johnwquinn.com http://www.amazon.com/dp/1933909749/ref=cm_sw_r_fa_dp_Uw39nb19XZMMV

    3. Yesterday's phone call with CEO Stephen Bennett

      Michele Shusterman
      Petition Organizer

      Yesterday I had a phone call with Stephen Bennett, the current CEO of United Cerebral Palsy.

      I discussed my concerns about the continued reference to the cerebral palsy community in the UCP name and I offered concrete support and examples for these concerns. There was no concession on his part.

      Below is a link to a video for the UCP World Challenge. The video states that every dollar raised supports someone with cerebral palsy. This is an untrue statement (at least in the US). Only 10% of US funds raised will be going to CP research, which an international org will manage. Mr. Bennett said he would contact the CEO of the international affiliate who initiated the program, but wouldn't make any promises about a change to the video since he doesn't have control here. Really? The UCP name is all over this page. It's unacceptable. This is the same affiliate he closely and conveniently aligned his organization with when it suited our discussion.

      http://www.worldcpchallenge.org

      World CP Challenge

      Get active, have fun and support children & adults living with cerebral palsy.

    4. Reached 250 signatures

    Supporters

    Reasons for signing

    • Christine Heuer SPARKS, NV
      • 12 months ago

      My granddaughter has CP and we need to channel more funds to research for causes and prevention of this illness, as well as funding towards therapy. The UCP name is confusing and misguiding.

      REPORT THIS COMMENT:
    • Sarah Halstead ELIZABETH CITY, NC
      • 12 months ago

      My son has CP and I would like there to be no confusion.

      REPORT THIS COMMENT:
    • Sam Wilen DURHAM, NC
      • 12 months ago

      I have a good friend whose granddaughter has CP, and who has, with her daughter-in-law, educated me about it.

      REPORT THIS COMMENT:
    • Jane Hillis HAZEL GREEN, AL
      • about 1 year ago

      My 6 yr. old grandson has CP and his mother, my daughter, devoted her life to his care.

      REPORT THIS COMMENT:
    • christina poore NORTH KINGSTOWN, RI
      • about 1 year ago

      grandson with cp

      REPORT THIS COMMENT:

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