BERWICK, Maine (NEWS CENTER) — Zachary Weinberger suffers from seizures, his cognitive abilities are deteriorating and needs round the clock care.
The Berwick teen is eligible for 80 hours of week of in home nursing care, but his family says he only gets a fraction of that because of a severe shortage of nurses.
Weinberger was diagnosed just two years ago. His family says, besides dealing with the devastation of his fatal illness, they're also fighting to get him the care he needs.
Zachary Weinberger started having seizures when he was 11 years old.
Now he's 18.
He's confined to a wheelchair, his speech is diminishing and he can't take care of himself. A genetic test finally revealed that has a rare and terminal form of epilepsy call Lafora disease, one of 200 known cases in the world.
Weinberger's mother says her son's condition worsened after battling a bout of pneumonia. Under MaineCare he qualifies for 80 hours a week of in home nursing care -- but has not been able to get all of the hours filled due to a shortage of home health nurses in Southern Maine.
"I feel like they failed us in many ways," Weinberger said.
Zachary's mom says her co-workers donated their sick time and vacation time so she could stay home and care for her son. She also reached out to home health agencies in New Hampshire.
"More than half of them wouldn't accept out insurance," Weinberger said.
Recently Cor Health, the home health agency working with the family has been able to hire two nurses -- to cover more than half of the hours needed take of Zachary. Susan White, the agencies’ administrator tells me by phone registered nurses are retiring sooner than new nurses are able to replaced has contributed to the problem.
"We have been working really diligently outside of the box and new avenues to obtain RN's for clients like Zachary," said Susan White, administrator of Cor Health.
We reached out to Department of Health and Human Service who administers MaineCare. A spokesperson told us staffing shortage of home health nurses is a significant problem for agencies that contract with MaineCare, but there are steps the agencies can take.
In a statement, a department spokesperson told NEWS CENTER, "Once hours are authorized, it is the responsibility of the agency serving the member to fill those hours. In the event the agency has difficulty filling hours, the agency is encouraged to contact MainCare."
MaineCare staff will then contact other agencies in an attempt to fill authorized hours and meet the member's needs.
DHHS officials also note that MaineCare rates for most personal care and private duty nurses increased last year and another round of increases was included in this year's budget — which could help with the nursing shortage.
The family has started a GoFundMe page to help them pay for Zack’s medical costs.