Davidson County family could lose medical care for child with rare syndrome under health care plan

DAVIDSON COUNTY, N.C. -- Crystal Bryant is a fighter. She is fighting for her 2-year-old daughter Caitlin and more than 2,300 additional disabled children in the state in need of financial help to stay alive and stay at home.

"Our private insurance is wonderful but it doesn't pay all our medical bills," said Bryant, who has been reaching out to lawmakers in Washington pleading for them not to cut Medicaid funding.

The money helps families of medically fragile children pay extremely high medical bills like Caitlin's around-the-clock care. Caitlin was diagnosed with congenital bilateral perisylvian syndrome, a vary rare syndrome that's caused her facial paralysis and doesn't allow her to swallow.

"We use [the funds] specifically for nursing care, Caitlin's nursing care costs over $200,000 per year," she said Thursday. "There is no sleeping, you have to be awake and alert at all times that's because if her trac needs suction or gets clogged ... it's life or death."

The Medicaid funds are shared with families through the the state's Community Alternatives Program for Children, also known as CAP-C. Those funds have been on the chopping block before and families fear they are being considered for cuts again with the latest health care overhaul bills being proposed. Both the House and Senate versions of health care bills call for around $800 billion in Medicaid cuts, according to the Congressional Budget Office.

"Please have a heart," Bryant said. "It's not about dollars and cents it's about humanity, about children's lives, our family's lives."

Not all states offer the help but North Carolina does as long as the federal Medicaid funds are coming in.

"If CAP-C is cut these children are otherwise children that would be institutionalized," said Bryant, who is also a social worker by day helping families similar to hers. "Number 1, [institutions] are not where they need to be they need to be in their home with their family and number 2, there is not enough institutions in the state to house these children."

Data from the North Carolina Health and Human Services shows it will cost taxpayers a lot more to care for medically fragile children in state institutions rather than staying at home with around-the-clock medical care.

"I count ourselves very fortunate that we have this program," she said. "That's why we fight to keep it."