“Inconsistency in nursing takes away peace of mind and puts my son at risk. Just when we got Bryan’s night shift covered, COVID hit and took that away,” says North Carolina mom Chrystal Crider. Her 7-year-old son Bryan has a COLA 1 Gene defect that causes Cerebral Palsy, Hydrocephalus, kidney function issues, congenital cataracts, silent aspiration, behaviors changes, and limits control of his movement. Bryan also suffers from a seizure disorder that requires skilled nursing to ensure he remains healthy and safe at home.

Bryan is authorized to have 8 hours of daily skilled nursing coverage during the day and 8 hours overnight under North Carolina’s private duty nursing (PDN) program. PDN has kept him safe at home and out of ERs and permanent living facilities, but NC has had a home nursing shortage since even before the pandemic. Agencies struggle to recruit and retain area nurses, in large part because hospitals and other facilities can offer nurses better pay—up to $15 more per hour—as state program funding limits what nurses can make in home care. COVID has only exacerbated this, as Bryan and other NC families have seen these shifts go unfilled despite doctors deeming the nursing hours medically necessary. “Consistent nursing allows me and Bryan’s father to work during the day and sleep at night…basic things we need to provide Bryan with a healthy environment. But since his night nurse fell ill during COVID, I sleep on his bedroom floor in case he has a seizure or an issue with his oxygen. Most importantly, this impacts his safety,” says Chrystal.

Recently, the North Carolina legislature increased funding to every state-based home care program by 15%, but only increased PDN funding by 5%. Chrystal and other advocates who are struggling to access the PDN care their loved ones need are urging lawmakers to provide a permanent 15% increase to the PDN program so the many medically-complex North Carolinians that need home nursing care can access it. “Parents of children with special needs struggle every day to make life as comfortable and safe as possible for their kids every day,” adds Chrystal. “COVID has rocked our world, and we need the state’s support to make sure that families like ours can access the nursing care our sons and daughters deserve.”