Parents fight against plan to cut services for children with special needs

Posted July 26, 2016 5:55 p.m. EDT
Updated July 26, 2016 7:38 p.m. EDT

— Natalie Weaver is proud of her daughter Sophia. While Sophia has battled disabilities, Weaver has fought to keep her 7-year-old at home and out of an institution - something she has been able to do, thanks to North Carolina's Community Alternatives Program for Children, or CAP/C, Medicaid waiver program.

"My daughter's life depends on having in home services and having eyes watching her at all times," Weaver said.

About 2,200 children are part of the state's CAP/C program, which gives medically fragile children, and their families, access to money for nursing and other special needs. News that the state was reducing those services stunned the Weaver family when they found out Sophia's allotted nursing hours would be cut in half.

"It was completely shocking," Weaver said. "I was stressed and in shock for a couple of days and then I just got my mom spirit going and decided I needed to fight this. I will do whatever it takes to fight it, and that's what I'm doing right now."

She and other parents have banded together, voicing concerns to the Division of Medical Services, including the reduced hours, a breakdown in communication and the lack of access to other key benefits.

"I almost went a year taking care of my daughter day and night with hardly any sleep, and there are a lot of families that have to do that," said Jenny Hobbs, who has three children on the CAP/C program.

Dave Richard, the deputy secretary of the Department of Health and Human Services, said the agency is now working to reshape the plans.

"We just fell down. We didn't have the right communication strategy to get information out early in this," Richard said. "I think we are learning. We are doing a better job on it."

An intimate workshop meeting was held on Tuesday, the first in a month-long series, was aimed at getting feedback and hammering out changes to CAP/C. During the meeting, parents voiced their concerns to the state.

"I am hopeful," said Weaver. "I do feel like they are listening, but I will not believe it until it is written that they are going to do what is best for our children."

Some case managers and parents said they came into Tuesday's meeting giving the agency a "F" and left giving it a "C." Parents said they left feeling optimistic that their concerns are being heard.