- Published on Thursday, 21 July 2011 13:25
After her first meeting in the White House, Meg Comeau had one thing on her mind. It wasn't that she was steps away from the country's top politicians and its seat of power. She couldn't stop thinking about a 14-year-old girl who struggles to breathe at night.Carissa Schlichting, a 14-year-old who has Down syndrome, uses Medicaid funds to pay for the night nurses who ensure her breathing machine is working properly. If Medicaid's budget is slashed, Carissa's family may not be able to afford those nurses.
"I walked out that door worried about Carissa being able to breathe at night," said Comeau, a project director at Boston University School of Public Health's Health and Disability Working Group (HDWG). "To walk out of a meeting being worried about a 14-year-old being able to breathe at night, it doesn't get more real than that."
As the United States government continues to hash out a plan to lower the country's budget deficit and national debt, families like Carissa's are worried government programs they depend on, like Medicaid, will be cut. In an effort to put a human face on the issue, Comeau and two other families, including Carissa's, met with three of President Obama's policy advisors on July 7 to discuss the importance of Medicaid to children with special health care needs.
"As politicians are struggling to balance the budget, families are trying to do the same thing," Comeau said. "For many of us with children with special health care needs, it could be a matter of life and death to figure out that balance."
Comeau has firsthand experience using Medicaid. Her daughter, Sarah, 23, has Prader-Willi Syndrome, a rare complex genetic disorder. When Sarah was younger, the family spent close to $10,000 a year on additional medical co-pays and deductibles that their primary private insurance didn't cover. Medicaid, their secondary insurance, footed the extra bills. Without Medicaid, Sarah's quality of life would be much lower, Comeau said.
Comeau said the 90-minute visit featured a "real back-and-forth dialogue." Representing the White House and the Obama administration were Kareem Dale, special assistant to the president on disability policy; Jon Carson, director of the Office of Public Engagement; and Nancy-Ann DeParle, deputy chief of staff at the White House.
"I think that they were honest in conveying they were doing their best," Comeau said. "I left the meeting feeling a sense of satisfaction that we were able to put a real face on the statistics and numbers for the people from the administration. They would be able to go back and arm their colleagues with information to continue to fight the good fight."
Read more about the visit on the Catalyst Center blog.
Watch a video on families with children with special health care needs who use Medicaid.Submitted by Elana Zak