Julie Crockett’s 8-year-old granddaughter, Sophia McConkey, relies on Medicaid every day. She has a rare genetic disorder called TBCK syndrome that causes low muscle tone, seizures and fragile bones.
McConkey requires 24-hour nursing care, which allowed her to qualify for a Medicaid waiver called Community Alternatives Program for Children, which pays for 16 hours of nursing a day, Crockett said. Her family provides the other eight hours. Without the extensive nursing support, McConkey would have to live in a nursing home.
Crockett said that would be devastating, especially as there’s no nursing home for children in the Greensboro area where they live — which would leave the child without her family for the first time in her life. McConkey is aware of what’s going on, even if she can’t talk, Crockett said…