KNOXVILLE, Tenn. (WATE) — The mother of a severely disabled young adult is fighting to have overnight nursing care, by an RN, for her daughter. However, TennCare says a registered nurse is “not medically necessary,” and that an aide and other home care services are adequate.

Six years ago, Sadia Jallow battled TennCare over a different issue regarding her disabled daughter. Binta Barrow had a brain malformation at birth, she’s blind, can’t walk, has frequent seizures, and cerebral palsy. In March, Barrow almost died. She was put on life support, but slowly recovered. Five months later, she returned home.

For the last four months, her mother has been battling TennCare, again.

Sue Coffman, a private-duty registered nurse, cares for severely disabled Barrow during the day. Regulations suggest the type of tracheal airway suctioning Barrow needs is a function that can only be done by a nurse. From TennCare, Barrow receives 24/7 assistance. At night an aide is assigned.

Since her daughter returned in August from the hospital after nearly dying from a seizure, Jallow says the agency that supplies around-the-clock care for Barrow cannot always provide an aide for overnight assistance.

“That’s what we are fighting for now. The aides are here from 11 p.m. to 7 a.m. Then Saturday and Sunday they are supposed to be here from 7 a.m. to 3 p.m. But I cannot get it. I am physically here by myself with Binta,” Jallow said. “A day like today, I am supposed to be taking care of Binta from 3 p.m. up to 7 in the morning. Then I get up and go to my job. Then come home. When the nurse leaves tomorrow again at 3, I have to take care of her again until the following day in the morning.”

Jallow has congestive heart failure and has had heart surgery that restricts her from lifting Barrow. It is not every night that Barrow goes without an aide, but what Jallow wants is for an RN to be present overnight because of the seriousness of her daughter’s disability. She shared with WATE four letters from Barrow’s doctors, all saying she needs a full-time nurse at night, not an aide.

On November 4, a letter shared by Jallow shows TennCare wrote that private-duty nursing is not medically necessary.

“What are they thinking about? Who is up there with a medical background, that would say it’s not medically necessary? Somebody with a trach, somebody who cannot talk, who cannot speak, cannot walk, cannot eat by mouth, tube fed, you name it,” said Jallow.

TennCare told WATE: “Ms. Barrow receives medically necessary nursing and other home health services.” The “appeal process is underway,” we were told. “It includes multiple levels of review, including reconsideration by the member’s MCO, Medical Care Organization, as well as independent medical review, prior to being set for a hearing.”

“I want the care that she needs. The care that she needs is private duty nurses at night time because they are the only people that are skilled, that are allowed to use those machines,” said Jallow.

An appeal hearing was set for December in Barrow’s case, but attorneys at the Tennessee Justice Center who represents Barrow asked that the hearing be continued. A new date has not yet been set.

The Nashville-based Tennessee Justice Center took on Barrow’s case six years ago when she turned 21, and her around-the-clock care was reduced. As we reported then, the justice center was successful in getting that decision reversed.