Natalie Weaver is proud of her daughter 7 year old daughter Sophia. While Sophia has battled disabilities, Weaver has done everything in her power to keep her child 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.

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. The Weaver family was stunned by news that the state was reducing those services and that Sophia’s allotted nursing hours would be cut in half.

According to WRAL News Weaver said “It was completely shocking. 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.”

As a result, 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.

WRAL News is reporting that the deputy secretary of the Department of Health and Human Services, Dave Richard said the agency is now working to reshape the plans.  Richard also said “We just fell down. We didn’t have the right communication strategy to get information out early in this. I think we are learning. We are doing a better job on it.”

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

About the future, Weaver said “I am hopeful. 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.”

Parents said they left feeling optimistic that their concerns are being heard

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