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Local families travel to White House, discuss Medicaid

Jul. 07, 2011 @ 12:00 AM

On most days, Amanda Keaton can be found working as a critical care nurse in the cardiac unit of St. Mary's Medical Center, and her husband, Greg Keaton, can be found working as a driver for Walker Machinery.

On Wednesday, however, the Milton couple found themselves in the White House in Washington, speaking on behalf of children and their families who rely on Medicaid funds.

Representing The Arc, a group that advocates for people with intellectual and developmental disabilities, Amanda and Greg Keaton spoke with White House staff about how Medicaid has been crucial for their son, 18-month-old Graysen, who was born with DiGeorge Syndrome, a chromosome disorder resulting in the poor development of several body systems.

They and three other families from throughout the country were invited to talk about how Medicaid helps their families function with day-to-day needs. Joining them on the trip was Graysen's nurse, Ruthanna Withrow.

They spoke to John Carson, deputy assistant to the president and director of the Office of Public Engagement; as well as special assistants Kareem Dale and Phil Schiliro; and Jeff Crowley, a senior advisor on disability policy.

The Keatons, who also have a 4-year-old daughter, Kyndall, shared about Graysen Keaton's main medical conditions, which include two severe congenital heart defects. He has required a tracheostomy and ventilator support since he was 8 weeks old, and he spent his first 6 1/2 months in the hospital. He's suffered two strokes, undergone three open heart surgeries, a feeding tube placement and multiple heart catheterizations, and he hit the $1 million cap on his mother's health insurance before he turned four months old.

Nursing care for Graysen, specialized pediatric tube feedings, along with other necessary therapies, preventive medications and vaccines are covered by Medicaid through West Virginia's Children with Disabilities Community Services Program.

As Congress faces decisions about how to keep federal spending in check, Amanda Keaton says drastic cuts in Medicaid would force her to quit her job to take care of Graysen, and they couldn't afford the nursing care without it, she said in a written statement.

"Medicaid is our lifeline," she said, adding that she wanted to urge the White House to keep the nation's commitment to provide "for the most vulnerable, like my son, so that he can continue to live with us and we can keep our jobs and our home."

She hopes their visit had an impact on the government officials with whom they spoke.

"They seemed very touched," Amanda Keaton said.