CHARLOTTE, N.C. (FOX 46 CHARLOTTE)– Ari Anderson defies odds.

Diagnosed with Spinal Muscular Atrophy at birth, he was given just a 10 percent chance of surviving past the age of two. Now 30, Anderson has a bachelor’s degree from Queens University of Charlotte and a master’s level certificate from UNC Charlotte.

It hasn’t been easy. He requires round the clock care from private in-home nurses.

“Several times a day nurses use a vest that vibrates my lungs,” Anderson, using a computer-assisted voice, said in a video shared with lawmakers. “I need my nurses to use jet-fast interventions to clear my tracheotomy from huge mucus plugs before I suffocate.”

“This is life saving work,” said Hakeem Gaines, the director of Bayada’s pediatric office in Charlotte.

The non-profit provides home healthcare services to sick and disabled children. Gaines says the private duty nursing industry is on life support. That’s because private nursing companies caring for critically ill patients in the Carolinas say they’re losing healthcare workers over low pay. Many are leaving to work for hospitals, or administer covid-19 vaccines, where they can earn more money, Gaines said.

The industry is now asking lawmakers for a lifeline.

“This, to me, is a matter of quality of life,” said Gaines. “And, in some cases, unfortunately, a matter of life and death, right? Because we need these qualified professionals to provide care.”

Since the start of the pandemic, Gaines says he has lost 30 percent of his nurses and has had to turn patients away due to staffing shortages. The industry is upset that other healthcare providers received more money in temporary federal assistance. They are asking the North Carolina General Assembly for $5.8 million to increase their Medicaid reimbursement rate.

The money would be used for salaries to attract and retain qualified nurses, Bayada representatives said.

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In North Carolina, 1800 sick and disabled adults and children rely on this service.

“What would happen to your patients if you don’t get this fund?,” asked FOX 46 reporter Matt Grant.

“We would see more patients coming home without nursing,” said Gaines. “Being taken care of by their families.”  

Anderson says the home care he receives has kept him out of the hospital. He shared his story in a video with lawmakers hoping to bring awareness to this specialized type of care.

Bayada hopes money will be included for private nurses in the 2022 budget, which should be finalized by the end of June.