Bill for medically fragile children fails to pass session

A proposal that would financially assist parents caring for medically fragile children failed to pass the New York state Legislature this session.

It comes at a time when the state of New York like much of the nation is dealing with a nursing shortage.

“I cannot stress enough,” said Linda Molina, co-founder of the Voices for the Medically Fragile of New York. “This is not just for my family; it is for all the families that are behind us here.”

Shortly before the close of session, Molina and others gathered at the state Capitol.

It was to show support for the Complex Care Assistant Bill.

A proposal that would authorize Medicaid coverage for a Complex Care Assistant Program in the state of New York.

The program would allow legally responsible adults to be trained and paid to help fill critical gaps in care for medically fragile children.

“If we aren’t able to financially care for our children, they’re going to end up in institutions and that is not a place for our children,” said Molina. “They need to be home with us.”

Molina says the proposed legislation was written in honor of her 16-year-old daughter.

It was sponsored by Democratic state Assemblyman Phil Steck.

“The Senate has passed it,” said Steck.

The measure failed in the Assembly.

Steck says it’s over concerns the program would turn out like the state’s Consumer Directed Personal Assistance Program, which allows chronically ill or disabled people to hire family or friends to be their paid caregivers.

“That program became very, very expensive and led to the governor imposing some severe restrictions on it,” said Steck.

The assemblyman says his measure is different.

He says it would allow parents to be trained and pay them a minimal payment to keep them financially afloat.

“These severely disabled children are entitled to have private duty nursing paid for by the state in the Medicaid program,” said Steck. “However, there’s a shortage of private duty nurses available. So, you might be entitled to 80 hours private nursing and only get ten.”

Advocates say the result is some parents are having to quit their jobs to care for their medically fragile children which is putting many of them in a financial bind.

“We have moms staying in domestic violence situations,” said Shannon La Vigne, co-founder of the Voices of the Medically Fragile of New York. “We have moms going homeless.”

Advocates tell Spectrum News 1 some families are so desperate for help they’re moving to nearby Massachusetts which has a program like this established.