Judge orders Florida to change how it cares for children with complex medical conditions

A federal judge is ordering Florida to make changes to keep children with complex medical conditions out of nursing homes and help them receive care in their homes.

The U.S. Department of Justice says for years, the state "unnecessarily institutionalized" several children and now their parents are speaking out in the wake of the new ruling.

For years Julie Pagano has been fighting the state to get proper care for her nine-year-old daughter Olivia.

"I just don't feel that disabled kids are a priority in this state," Pagano said.

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Olivia was born unable to swallow and has a dangerous form of sleep apnea and several other complex medical issues. 

She's been on CMS Sunshine, a Medicaid plan for children with disabilities. Pagano says the plan should provide consistent nursing coverage, but that was never the case.

"If I don't have a nurse, I can't send Olivia to our regular daycare. I can't have a friend look after her. She needs to be with an LPN or R.N. because of her specific medical needs, so the fact that nurses can just call out and not have replacements is unacceptable," Pagano said.

Pagano says the lack of care forced her to leave her real estate career to care for Olivia and take up a vacation sales job, but still, she says it’s a struggle.

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A federal judge heard Pagano’s story as she testified along with several other parents in similar situations as a part of a lawsuit brought against the state of Florida by the U.S. Department of Justice, claiming the state violated the Americans with Disabilities Act when they say it failed to provide proper care to children with complex medical issues.

Wednesday, the judge sided with the Department of Justice, ordering the state to change how it cares for children like Olivia.

"I was just delighted. I mean, it's time that somebody, you know, can help kids like my daughter, and Florida just seems to be like a forgotten state when it comes to kids with disabilities, so for somebody just finally to listen and hear our stories is just amazing," Pagano said.