— Greg Dworkin (@DemFromCT) July 2, 2017
Local media is covering the impact of the Senate Bill. Here in North Carolina is an extraordinarily detailed and humane look at the care that medically frail kids needs. It is a lot.
Among those who could be deprived of medical services are nearly 2,400 “medically fragile” children in North Carolina whose ventilators, oxygen tanks, feeding tubes, catheters and round-the-clock nurses are covered by a little-known Medicaid program available to middle-class families with private health insurance.
The program pays for services that private insurance doesn’t cover, allowing parents to work and the children to attend school….
Caring for one seriously ill child in the program costs an average of $80,000 a year in North Carolina, compared with $4,700 for a typical Medicaid beneficiary in the state. That could make the program an easy target for cost reductions, parents fear, because the amount of money required to treat one “medically fragile” child can be used to provide health care for 17 kids on Medicaid.
“Our kids aren’t cheap,” said Jenny Hobbs, a Pfafftown mom near Winston-Salem who works as an HR manager. Three of her four children are “medically fragile.”
Madison, 7, Meredith, 12, and Michael, 14, all have mitochondrial disease, a progressive disorder that can cause muscle weakness and pain, seizures, vision loss and hearing loss, learning disabilities and organ failure, among other complications. The condition has no cure. Last year, Madison was also diagnosed with melanoma. All three use feeding tubes for medications and supplemental feedings. Meredith and Michael need ventilators to help them breathe, while Madison requires an oxygen tank. All three have their own designated private duty nurse who accompanies them to school and cares for them overnight.
A block grant program creates a very strong incentive for states to minimize the amount of money that they spend on the highest cost cases. That means providing minimal or inadequate care to the kids who need the most help.
The local press is doing a good job of highlighting locally relevant stories.
Use these stories when you call your Senator this week.