TennCare expansion would change lives for children with life-threatening disabilities

Alysa Darmody just celebrated her son Oliver's 5th birthday Tuesday, but because he has a rare condition called Lissencephaly, his brain won't develop beyond a 6-month-old's. (Image: WTVC)

Tennessee children with life-threatening disabilities are being denied Tenncare coverage. That's because their parents make too much money.

New legislation is making its way through the State House today that could change everything.

Oliver Darmody just celebrated his 5th birthday Tuesday, but because he has a rare condition called Lissencephaly, his brain won't develop beyond a 6-month-old's.

"He knows we're talking about him right now, I know," said Alysa Darmody, Oliver's mother.

Oliver's parents are faced with difficult decisions when it comes to their child's medical needs.

"We've dealt with everything from various surgeries, G-tubes, RSV. We're dealing with kidney stones right now because of some of his anti-seizure medications,"said Darmody.

That's because not only does Oliver need round-the-clock care, but also because per state standards they make too much money to qualify for TennCare.

"They're forced to bankrupt. They're told to get a divorce or move out of state or to put their children in an institution. That's their only path to Medicaid coverage currently," said Sarah Scott, who is the East Regional Organizer for Family Voices of Tennessee.

Scott says legislation proposed by Senator Kerry Roberts would change the way kids like Oliver get medical coverage.

The bill would expand funding based on need, not income.

"I hope the dollar amount is not too cumbersome because, it would completely change our life," said Darmody.

According to Scott, the TennCare expansion would cost the state approximately $47 million.

TennCare's director testified that, under the amendment, 3,600 children would be covered.

The proposal will continue to be debated in the subcommittee next week.

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