Taking care of Alexia Trimarchi, 15, requires around the clock care. She’s diagnosed with periventricular leukomalacia, shunted hydrocephalus, and spastic quadriplegic cerebral palsy. Her parents, Joe and Rosina Trimarchi, make it work.

"This is my daughter. She means a lot to me. We want her to be alive, and healthy,” her father said. 

Due to her disabilities, she’s unable to talk, has a compromised immune system, and has risk of seizures. Despite that, she has gone to school for 12 years thanks in part to a highly skilled Medicaid Private Duty Nurse by her side.

That’s no longer the case.  Her parents pulled her out of school over concerns for her safety. Prior approval for the Medicaid nurses expired, and they must follow new Medicaid guidelines.

Policy changes at both the State Education Department and State Department of Health this year put Alexia's care into the hands of her school district.

The change stems from a 1999 Supreme Court decision ruling that her 1-on-1 type of care must be included in school health services.

That means the New York City Department of Education would assign registered nurses for Alexia at school to replace the Medicaid private nurses she has had for years.

The Trimarchi’s said they fear that arrangement won't be adequate for Alexia's fragile health. For example, they said a nursed would have to administer valium within minutes at the smallest sign of a potentially deadly seizure.

"I don’t know if a nurse at the Department of Education would know that,” Rosina Trimarchi said. “I don’t know what their experience is going to be"

A DOE spokeswoman couldn't comment specifically to the case, but said it strives to provide the highest levels of care to its special needs students.

"These are human beings they’re not a number on a piece of paper," said Joseph Trimarchi, who has been struggling with the documentation needed to get Medicaid private duty nurses approved for Alexia.

In order for Alexia's Medicaid nurses to be allowed back in school, the school district would have to show documentation that the Department of Health it can't provide the skilled nursing services she needs.

Alexia's parents says the DOE offered to assign her nurses at school,  but they are keeping her home for her safety until they find a solution they're comfortable with.