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Girl in hospital intensive care after Medicaid stopped

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KANSAS CITY, Mo. -- A two-year-old Kansas City girl has been in intensive care at Children's Mercy Hospital for a month. Her family says she could have been at home instead if Medicaid hadn't cut off her coverage on April 1.

Laila O'Roark spent the first 13 months of life in the hospital after being born very premature. She has always needed a ventilator to survive. Last May, she went home to receive nearly round-the-clock nursing care. It had been covered by Missouri Medicaid until April 1 when her mother received a call out of the blue from a state worker.

"That I just got word that your Medicaid is inactive and First Stat is talking about pulling your nursing services. I need you to call me," said Lais O'Roark.

A worker with the State Department of Social Services told the O'Roarks that Medicaid was being cut off because it had been overlooked that Laila was no longer institutionalized. The O'Roarks say it makes no sense since Medicaid had been paying home equipment and home nursing bills. They were told they'd have to re-apply for Medicaid.

"To have that taken away, it's just not fair. It doesn't make sense," said the mother.

The parents, unable to afford the ventilator and nursing care at home, say their only choice was to put Laila in Children's Mercy. She's been there for a month.

"She has to be in an intensive care unit because she is on life support, so it's costing thousands and thousands of dollars a day versus being at home which would be half of the cost," said Lais O'Roark.

The parents don't know if Medicaid will pay retroactively if their coverage is restored. They were told the process of getting Medicaid again would take 90 days.

"We have submitted to all their requests and we're at their mercy. And we're just stuck in purgatory," said the father, Shane O'Roark.

Their two-year-old, Laila, is stuck in an intensive care unit when, they say, she should be at home.

A state spokesperson tells FOX 4 that laws prohibit releasing information specific to a case. But the spokesperson says an individual is given written notice before coverage is stopped, and informed of the right to a hearing. The O'Roarks say they did not receive that notice. We'll keep you updated.

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6 comments

  • Mirza

    I’m a nurse tht works in the home health field and for the comment about never hearing Medicaid paying for around the clock nursing, it’s a lot more common than u may think. Laila belongs home

  • Jessica

    My family and I went through the same thing a year ago. Medicaid does cover around the clock nursing care. My child has a ventilator also and was in the hospital the same time this family was. If they had insurance other than medicaid it probably didn’t give the benefits medicaid can and will. Also, taking care of a child with medical needs is a lot of money, trips to the doctor, and multiple hospitalizations. Missouri should be like Kansas. If you have a special needs child they won’t stop coverage no matter how much you make or what the circumstances are. And I’m happy she works out to take care of herself. Staying home and taking care of a medical needs child is hard. And every parent needs me time! They are an awesome family and deserve the help they need for their child, and her needs!