Champions of Change Honored at White House

WHChaps 1This week, staff from UCP National, along with several participants in our summer intern program, attended the Champions of Change ceremony at the White House in Washington, D.C. The program, “Disability Advocacy Across Generations” recognized the 25th anniversary of the Americans with Disabilities Act and nine “Champions of Change” selected by the Obama administration. Each champion has been very influential in the disability community and has brought about major changes, while facing obstacles of their own.

Champion Dilshad Ali, a mother of a son with autism, spoke about how disability is something that is hidden and never spoken of in her Muslim community. Ali discussed the importance of being able to access the support of one’s religious or cultural institutions as part of a panel on Effective Disability Advocacy. There was also Dior Vargas, a Latina woman who suffers with depression and anxiety. Vargas emphasized how many times disabilities are ‘invisible’, and therefore go unnoticed. She brought an interesting aspect to the table, and channeled people’s focus on another kind of disability, mental illnesses, which are often left out of the conversation on disability advocacy.

The day’s speakers included Jim Abbott, a former MLB pitcher and Olympian born without a right hand. Abbott has faced physical obstacles his whole life – especially in sports. He spoke about how he had to do things a little bit differently, but that is what got him to where he is today. He showed the audience how he adapted to pitching a baseball with one hand, and told stories about how former teachers and coaches who were open to “doing things differently,” giving him the opportunity to excel.

Another panel on Owning the Future: Disability, Diversity and Leadership included some Champions, who faced more communication barriers than others. Mike Ellis, who is deaf, explained more about his role at AT &T and working to ensure communication technology was accessible to all. Another champion, Catherine Hutchinson, experienced a severe brain injury and is now quadriplegic used a speech synthesizer to communicate.

At the end of the second panel, Derrick Coleman from the SuperBowl champion Seattle Seahawks worked to motivate the crowd to follow their dreams. He lost his hearing at the age of 3 and is the first deaf player in the NFL. Coleman told the audience to be themselves and love themselves.

U.S Secretary of Labor Thomas Perez closed out the event with information about current initiatives to improve upon worker rights, such as raising the federal minimum wage for all workers and echoed some of the panelist’s comments about the importance of participation in the workforce to true inclusion and independence.



UCP Contacts:
Lauren Cozzi, 202-973-7114, or
Alicia Kubert Smith, 202-973 7168,

AAPD Contact:
Rebecca Panoff, 202-521-4307,


Medicaid should not be gutted in debt ceiling negotiations

Washington, D.C. – July 12, 2011 – Today, a group of Americans who benefit from Medicaid services for people with disabilities—joined by representatives of and United Cerebral Palsy and the American Association of People with Disabilities—met with officials in the White House. They shared their personal experiences with Medicaid, putting a human face on this critical resource for millions of Americans with disabilities and their families.

“People with disabilities join all Americans in recognizing the need to tackle our national debt.  There are alternative ways to reform Medicaid without gutting the vital supports that create real opportunities for people with disabilities,” said Stephen Bennett, former President & Chief Executive Officer of United Cerebral Palsy. “You wouldn’t try to make a car more fuel-efficient by reducing the amount of gasoline in the tank. Slashing Medicaid eliminates the ability for people with disabilities to go to work, stay with their families and contribute to the economic recovery.”

Bennett continues, “Medicaid can receive a sensible tune-up that also achieves precisely what both parties want: a stronger economy and a reduced deficit while strengthening the hand of Americans with disabilities to be contributing members of society. To drastically reduce this vital support is short-sighted and wrong. We welcome the chance to be a part of the solution.”

“Today’s meeting shows what is really at stake in negotiations about Medicaid—access to opportunity for millions of people across our country. President Obama has the potential to be a hero for millions of Americans with disabilities in this country. The president has often spoken about the need to look at the way policies affect real people.  Today, Anna Liebenow and the Hetrick and Guzman families showed White House officials the real-world implications of proposed cuts to Medicaid. They are among the many Americans for whom Medicaid is a lifeline to opportunity, work, and a better life.  Slashing Medicaid would amount to rolling back the clock on opportunity for people with disabilities and their families.  America is better than that,” said AAPD’s President & CEO Mark Perriello. “I believe President Obama is emboldened to continue to support Medicaid and stand up for everyday Americans in these negotiations.

Participants included:

  • Anna Liebenow of Providence,Rhode Island. Anna uses a wheelchair due to MS.  Through Medicaid, Anna receives personal assistance that enables her to volunteer in her community and work. She also serves on the board of the Rhode Island Public Transit Authority.
  • Sue, Micah, and Nicholas Hetrick of Columbus, Ohio.  Micah, 22, has Down syndrome.  Medicaid provides assistance during the day while Sue is at work, supporting their family. Micah volunteers in their community and recently received his high school diploma.  Nickolas, 27, recently completed his PhD and will teach English in Columbus in the fall.
  • Linda and Javi Guzman of Chapel Hill, North Carolina. Javi, 17, has autism and Ehlers-Danlos Syndrome (EDS), a connective tissue disease. Through Medicaid, he has an aide during the day while Linda is at work. He also receives life skills training, transportation to community activities, and medical care.


The families met with the following White House officials: Jason Furman, Assistant to the President for Economic Policy and the Principal Deputy Director of the National Economic Council; Keith Fontenot, Associate Director for Health Programs, Office of Management and Budget; John Carson, Director of the Office of Public Engagement; and Kareem Dale, Associate Director, White House Office of Public Engagement & Special Assistant to the President for Disability Policy.

During the meeting, participants described the benefits of Medicaid. “Without Medicaid, people’s lives are so limited,” said Anna Liebenow. “At the White House, we told the staff what cutting Medicaid would do to us and to the many people who did not have a chance to share their stories today.”

Linda Guzman explained how real families like hers can contribute to the national discussion about Medicaid: “There are so many people who can relate to the struggle.  It’s important that people see me as a parent who loves her child more than anything,” she said. “If I didn’t have these services, I couldn’t go to work.  Then what would my family do?” she added.  Speaking about his trip to Washington to tell his story, Javi Guzman explained:  “I’m going to show the world what people with autism can do.”

Sue Hetrickspoke positively about the meetings:  “They were very open to hearing our stories,” she said. “For generations, my family has been hard workers, and so have I.  When I went to the White House and said this program is what keeps me working and gives Micah the opportunity to do the same, I showed them the real-world consequences of these decisions,” she added.

For more information on these families, visit and

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit

 About The American Association of People with Disabilities (AAPD)
The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership association, organizes the disability community to be a powerful force for change – politically, economically, and socially.  AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national force for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: