Albany mom pushing for bill to help medically fragile kids

ALBANY, N.Y. (NEWS10) -- An Albany mother is working to help hundreds of medically fragile families across the state, including her own. With high care demands and in-home nursing shortages, Linda Molina, is hoping to get a New York State Assembly bill passed that she said can change everything.

Linda Molina doesn't start her mornings like most moms. Along with working as a care manager, Linda also care for her medically fragile daughter -- which she said can also be 24/7. Linda's daughter, Jadyn has mitochondria disorder, a health condition that requires ongoing medical attention.

“It’s extremely challenging and that's why, right now, I have to take paid time leave," said Linda. "And I'm concerned about how I'm going to be paying the bills the next 3 months."

Linda believes nurses are vital for medically fragile families. However, nationwide nursing shortages are especially affecting in-home care.

“Nurses bring great value to a child's care but finding them, finding them available, finding one that meshes with your family, that understands your child, is very very challenging," said Linda.

Which is why Linda pushed for this New York State Assembly bill -- the Complex Care Assistant Act. This bill would allow family members to care for their medically fragile kids while getting paid.

“A parent is there for that child from the moment they’re born, they know the medical history inside and out and their child feels very comfortable with them," said Linda. "I'm her person."

Linda said the main goal for this bill is to help parents get back to work, while also filling the gaps in nursing care. For Jadyn, it's a no-brainer that she wants her mom to care for her.

“I like when she takes care of me," said Jadyn. “I feel like she pays more attention to me than any nurse does because my mom knows me since I'm little."

While the bill is still in early stages, assemblyman Phil Steck who is sponsoring the bill, said this act is highly important to hundreds of families across the state.

“These children can’t live without this care, so clearly something has to be done," said Assemblyman Steck.

Linda started a Facebook group for families in a similar position. She now has almost 700 members and believes the need for action is more urgent than ever.

“We don't know what the life expectancy is, there is no cure and the most I can hope for my daughter is that she be happy and that she lives the fullest life possible and that's what this would do for her," said Linda.