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State extends waiver, parents still nervous

SPRINGFIELD -- Parents of children with severe disabilities were relieved Thursday when the state extended a Medicaid waiver that helps cover the cost of at-home care.
SPRINGFIELD -- Parents of children with severe disabilities were relieved Thursday when the state extended a Medicaid waiver that helps cover the cost of at-home care. The MFTD waiver helps parents of children on tracheostomy tubes and ventilators by allowing Medicaid to cover some of the cost, including in-home nursing care and some excessive co-pays for the child's prescriptions, regardless of the family's income situation.

Pearl Baker, of Decatur, cares for her daughter, Jesika Hall, at home. Hall suffers from a rare disorder in which her brain didn't separate into lobes before she was born. She is immobile, on a trach and requires round the clock care.

Baker works a part-time job and relies on nursing care for her daughter when she's at work. She also depends on the MFTD waiver to help subsidize the cost of expensive medical equipment which helps keep Hall alive.

Most children with Hall's disorder are still-born or only live for a matter of days or months. Hall turned 9-years old this year and her mother credits her success on her at-home care, which wouldn't be possible without the help of the MFTD waiver.

“She very obviously wants to be here and she very much enjoys all the people around her,” Baker said.

But the state is trying to re-work the program as part of an effort to restructure Medicaid. A package of legislation last year which reformed Medicaid would have added a cap on income for families seeking the waiver, but Gov. Pat Quinn signed legislation this summer to remove the income cap.

Still, the waiver expired last year, and since then, the state has relied on a series of 90-day extensions to keep the program around. The latest extension was announced Thursday, days before the waiver was set to expire again. But parents, like Baker, are still on edge waiting for a permanent solution to the problem.

"There’s enough uncertainty with her condition alone that adding any more to that can just really almost drag you into a depression," Baker said. "Because you don’t know what’s around the corner.”
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