RURAL HALL, N.C. — It’s a beautiful day in January, and Desirée Moffitt and Jacob Fields are able to get their son Roan outside and to a park.
What You Need To Know
The Innovations Waivers help with in-home care
There are more than 14,000 waivers, but more than 16,000 people on the waitlist
The General Assembly funds the waivers
The parents are a biologist and ranger at Hanging Rock. Nature is part of their family.
“Roan was raised with no television, and we spent all of our time outside. He likes the crunch of leaves. He likes to throw sticks. Anything that snaps, he loves it,” Moffitt said.
Roan isn’t always at home. He currently lives at a group home.
Roan was born with fragile X syndrome and autism. He’s nonverbal.
The family has been through a lot since he was born in 2012.
Moffitt says it was hard from the beginning, but it was when Roan was 3 that she realized it would be harder than she expected.
That was when they got on the wait list for the Innovations Waiver, a Medicaid program that helps with in-home care.
“I was told that it was a 10-year wait with about 8,000 to 10,000 people on it at that point,” Moffitt said.
During that time waiting, Moffitt was pregnant with twins. That’s when something changed. Roan became violent.
Moffitt says she knew it was a possibility with fragile X, but it happened suddenly and intensely.
He would pull hair and hit. They had to keep him away from people.
“Our daughters, our twins, were about to be born, and we all we all saw it coming. We all knew what was going to happen,” Moffitt said.
The violence did turn toward the twins after they were born, and after trying everything they knew to do, Moffitt had a hard conversation with their doctor.
“His fragile X doctor said that there was nothing else that she could do to help our family, that his behaviors had gotten so severe and medications weren't addressing them, and we had been on five or 10 different medications at that point,” she said. “Nothing helped.”
That’s when they took Roan to UNC Hospitals, and he was admitted.
An Innovations Waiver spot opened up, but what they thought would be an answered prayer was a huge disappointment.
Moffitt says the in-home staffing was inadequate. She had to watch them just as much as she had to watch her son.
What followed was years of more programs, some helpful, some devastating.
Moffitt says Roan spent time in an out-of-state hospital that abused her son.
“And that is the biggest regret of my entire life was sending him there because the state of North Carolina has no oversight in these facilities out of state. We need more in-state, more focus in-state, more money going into the resources in our state so we can keep track of our own children and what they’re experiencing,” Moffitt said.
It’s one of the many ways she thinks there needs to be a change in North Carolina’s health care.
From the number of waivers, to the training and payment of staff, she says there are many ways families like hers could be helped better.
“I have never felt entitled to services from the government. I was desperate to work, and when we were in crisis, I could not. We were promised services because we have a disabled child and that would have enabled me to get a job outside the home and become a productive member of society. But instead, I couldn’t go anywhere,” she said.
Moffitt says her story isn’t unique.
According to the North Carolina Department of Health and Human Services, there are more than 14,000 Innovations Waivers. There are more than 16,000 people on the waitlist.
Dave Richard, the Deputy Secretary of Medicaid in North Carolina, says the General Assembly allocates the money for waiver slots.
In the last state budget it opened up 1,000 more.
He said that expanding Medicaid could also help.
“When expansion happens we'll be able to save funds in a different area. So, for instance, there are services that we provide with pure state money in the division of mental health, development, disability and substance use. So because more people will be eligible, some of those dollars could be utilized to match to bring down the federal money for these innovation waiver slots. So it's not a direct impact, but is an indirect impact that we could make a significant difference for,” Richard said.
There’s also the staffing shortage.
Without a trained and available workforce, there’s only so much that funding can do.
Moffitt is angry. This is not what she was expecting to experience while raising her first child, and she doesn't want any other family to have to go through this experience.
Now that she has been through it, she’s speaking out, hoping to be a voice for families who are still stuck in the cycle of caring for aggressive children, homebound to protect their children and others.
“This was traumatic, trying to just get the help that we needed, even just the bare minimum. No family should have to experience that,” she said.