Many worry funding cut will make it harder to stay home to care for relatives with special needs

CHARLOTTE — People who are caregivers for their relatives with special needs may have a hard decision to make soon.

“I love my son to death. Yeah, he’s my baby. He’s sweet,” Michelle Hicks told Action 9′s Jason Stoogenke. “Diagnosed with of course Down Syndrome, Autism, oppositional defiant.”

Kyle is 25 years old and loves having his toys around, as well as his mother.

North Carolina Medicaid would pay for Kyle to live in a long-term care facility. But it also offers what’s called the Innovations Waiver, which pays for someone to take care of him at home — it can be a healthcare worker or a relative.

Hicks says she tried professionals. “He can get aggressive. He was violent at times with some of the workers,” she said. “The workers just kind of stopped coming. It just became too much.”

So, Hicks says she quit her job to take care of Kyle herself.

The Innovations Waiver pays up to 40 hours per week, or in extreme cases, up to 56. But Hicks says Kyle needs far more care than that. “I have to do everything for him ... (help him) go to the bathroom … his food and stuff, he can’t cut anything up because … he does not have the fine motor skills,” she said.

When the pandemic hit, North Carolina Medicaid adopted what’s called “Appendix K,” which pays more than 56 hours per week for more severe cases. But Appendix K is going away on Nov. 11 and the pay will drop back down the way it was before the pandemic.

There is an exception.  The state says if you started acting as the caregiver for your relative before 2016, you may still be able to get covered for more than 56 hours.  If you started in 2016 or later -- like Hicks did -- you can’t.

“Relatives who were providing more than 56 hours of services on 12/31/15 may exceed the 56 hour limit and be approved to provide the amount of services that they were authorized to provide as of 12/31/15 as long as the beneficiary continues to choose the relative as the staff member, there are no health and safety issues, and the beneficiary is not isolated from their community,” according to Medicaid documents.

“Two hundred dollars a week I’m losing,” Hicks said. “Eight hundred dollars a month I’m losing.”

Hicks says she’s a single mother, but she’s looking for side gigs, anything to make money from home without taking her away from Kyle.

“I’m worried. I’m worried not for just for me, for a lot of other families,” she said.

The Innovations Waiver only covers care for people who are over 18 years old. Appendix K had expanded that to include minors too. North Carolina Medicaid officials are asking the federal government for funding to keep it that way for people who take care of children under 18 who, more importantly, have the most severe conditions.

During the pandemic, South Carolina adopted what’s called “flexibilities” as well. On Nov. 11, those also go back to the way they were.

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