WILLIAMSTON, MARTIN COUNTY - A child, who doctors said wouldn't live longer than two weeks, is at risk of losing her much needed at home health care. The reason, her sister turned 18. With one less dependent, the mother said her disabled daughter no longer qualifies for the Medicaid coverage she needs.
When Harlie Kinney's family lost Medicaid coverage, they were put on NC Health Choice. Her mother, Melody Kinney, thought this was fine but now, months later, she's realized it won't cover some of Harlie's most important health care costs.
8-year-old Harlie has Trisomy 18 - a medical condition similar to Down syndrome. Only 10 percent of children with Trisomy 18 make it past their first birthday, according to the Trisomy 18 Foundation.
One of Harlie's favorite things to do is dance to classic rock.
"Every day is a miracle with her. Every day is a blessing with her. You can come in and you could have the worst day going on and she'll give you that smile. It makes your day so much brighter, and so much better," Kinney said.
Her mom said Harlie's survived on Medicaid all her life, but now the family doesn't qualify for it. Kinney said when her older daughter recently turned eighteen; she no longer counted as a dependent.
"Everybody keeps telling me it's because of my income, but how can it be because of my income when Harlie's 100 percent disabled," Kinney said.
Now, the family misses being eligible for Medicaid by just a couple hundred dollars.
Harlie relies on oxygen, a ventilator to breathe, as well as a feeding pump. Her nurse, Darcy Wood oversees all of her equipment. Without her, Harlie could end up not being able to live at home.
Wood said losing Medicaid is especially hard on Kinney because she also has a thirteen-year-old disabled son.
"There have been mornings when I come here where her older son is having a seizure and Harlie's in a great mood. She's in here and her vent is popping off. So, how do you take care of one child that's seizing while another child is pulling her ventilator off," Wood said.
Wood said she's worked at other homes where families had Medicaid
"Medicaid was available and it appeared as though the family was better off than this family," Wood said.
Medicaid and disability covered the in-house nurse care. Right now, Wood is still taking care of Harlie, but her employer isn't getting paid for her work.
Medicaid also covered trips to the hospital by ambulance. This is the only safe way to get Harlie to a hospital with all the equipment she has, according to her mother. Now they're not sure how they'll manage the travel.
Kinney said she's been to the Department of Social Services many times to find a solution. DSS has suggested her daughter apply as an adult.
NewsChannel 12 contacted the NC Department of Health and Human Services in Raleigh. They said by law that they could not release specific details about Kinney's case. However, they did encourage Kinney to keep trying with her local DSS office to find other options.
Harlie's family has started a fund to raise money for a medical van in order for the family to not have to rely on an ambulance for safe transportation.
To help with the cause, you can go to your local BB&T Bank and ask to donate to the Hope for Harlie fund.