Hundreds of parents are expected to head to Charleston Wednesday to lobby Governor Nikki Haley for their children's medical coverage.
In January, medicaid-paid therapy providers were notified that at the end of March, the number of medicaid-covered therapy hours those with disabilities can receive would drop from 225 to 75.
One child the cuts would affect is Harmony Ralph of Myrtle Beach. At about 6 months old, she began suffering debilitating seizures. Shortly after, she was diagnosed with a neurological disease called lissencephaly. Many children with lissencephaly die before the age of two. Some will survive, but show no significant development beyond a 3- to 5-month-old level. Lissencephaly patients often die from aspiration of food or fluids or from respiratory disease.
Harmony's mother Janelle explains Harmony doesn't depend of feeding tubes and wheelchairs. She learning to use her leg muscles and can make some vowel sounds. She credits hundreds of hours of occupational, speech, and physical therapy sessions. All of which were covered by medicaid.
"Do I think she might possibly walk? Yeah," Janelle says. "Do I think she'll be able to eat food and not have a feeding tube? Yeah."
At Governor Nikki Haley's Horry County town hall meeting March 10th, Ralph asked Governor Haley about the bulletin the Department of Social Services sent out that explains the cuts. (Click Here to see question, Her question is around 57:00 in.)
"These cuts are not happening across the board. We are asking providers to negotiate," Haley responded.
Janelle Ralph says she isn't satisfied with that answer. She is still being told all of her hours are going to be cut down to 75.
"It's absolutely ridiculous. I mean, how do they expect you to do speech, occupational, and physically therapy with these children that absolutely need it and do it in 75 hours in a year? I mean that's nothing. 75 hours a year is nothing," she says.
Parents' frustration has spread online to Facebook.
Ralph is part of a group with more than 800 members called "SC Medicaid Crisis Help Our Children". Many members, including Ralph plan to attend another Haley town hall meeting in Charleston Wednesday to ask the governor for more aid to their cause.
The way it stands now, there is an opportunity for parents to apply for a special exemption through the South Carolina Department of Health and Human Services. Ralph says she's not sure who will review and approve the special requests, which have to be paid by a pediatrician instead of a specialist.
Janelle Ralph says she thinks if Medicaid didn't cover her daughter's therapies, they would have bills upwards of half a million dollars in just a year.
We tried to reach the governor's office Tuesday, but our calls and e-mails have not yet been returned.