LAKE ELMORE, Vt. -
All mothers know the pride of hearing their young ones attempt to communicate.
"She does make some sounds like mmm and uhhh," Kimberly Cookson said.
The difference with Kimberly's daughter McKayla? She's 13 and she'll probably never be able to speak for herself.
"She has a rare metabolic condition called nonketotic hyperglycinemia, which means she can't process glycine or protein in her body," Kimberly explained.
This condition causes McKayla to have innumerable seizures which cause brain damage. Kimberly's relationship with her daughter has taught her much over the past 13 years, one lesson learned the hard way: Kids with special needs are especially expensive.
"Some of her medications are $1,200 a piece," Kimberly said. "Twenty-two thousand dollars for the bed in her room now."
Her insurance and Medicaid cover most of McKayla's needs, but occasionally both fall short. When that happens the state covers the gap with what's called the payor-of-last-resort program. That program is in jeopardy.
"January 2014 would be when we'd officially be closing down the payor-of-last-resort system," said Dr. Harry Chen, the Vt. Health Commissioner.
Chen says 2013 will serve as a transition year. He says eliminating this program allows the state to serve more families in need by spreading out the federal dollars. Currently only one-third of eligible families receive funding from the state.
"They were not able to serve children with cancer, children with diabetes, children with other types of special needs," said Pam McCarthy, the CEO of Vermont Family Network.
McCarthy helps families like the Cooksons understand what resources are available to them.
Chen says he wants families to understand care will still be available; it just won't be coming from the state of Vermont. He wants to help families find grant programs they might not know exist.
"The people in the program are going to work tirelessly through this transition period to make sure we take advantage of all federal dollars, that we take advantage of all the foundation dollars," Chen said.
But it's the transition, McCarthy says, that scares families the most.
"The problem is what happens in this interim time," she said. "Are families going to be left hanging? There's a lot of anxiety around very expensive prescriptions."
She wants to make sure broadening this program to help other needy families doesn't mean kids like McKayla will fall through the cracks.
"It's going to be difficult for us financially, I think, for us to swallow this," Kimberly said.
The program is currently in the hands of the legislative Committee on Administrative Rules. That committee could make a decision to approve these cuts the Health Department recommends as early as Dec. 13.
