Knoxville mother fights TennCare after disabled daughter turns 21, loses round-the-clock care

(Photo: WATE)
(Photo: WATE)

KNOXVILLE, Tenn. (WATE) – The mother of a severely disabled Knoxville woman is having the fight of her life with TennCare. Her daughter recently turned 21 and her skilled nursing hours are going to be cut.

Cuts to round-the-clock care for TennCare members started during the Phil Bredesen administration more than seven years ago. Over the last seven years, many adults have had their skilled nursing hours reduced. TennCare says there are federal limits on hours of home health care nursing available to adults and round-the-clock hours for children change once a TennCare member turns 21.

A spokesperson said, “Care has to be cost-effective in order for it to be available to not just the few, but to the broader population of Tennesseans who need care today and will need care tomorrow.”

Binta Barrow is aware of her mother’s devotion and love. Binta is severely disabled and has been since birth. She has cerebral palsy, a rare brain malformation, has frequent seizures, is blind and cannot walk. For years, Binta’s mother Sadia Jallow and a cadre of nurses provided by TennCare have assisted Binta at her home with round-the-clock assistance.

Then in July, a notice came from TennCare. Because Binta was turning 21, her state-assisted skilled nursing care would be cut drastically to 40 hours a week. A few weeks ago, however, her skilled nursing hours were restored, but that’s only temporary until November 20.

“This is tiring to keep fighting for everything, fighting all the time. When this November comes, I have to keep fighting. I have to fight,” said Jallow. “So, what is 21? It’s just a number on the calendar. It’s not going to change the child’s health condition. Binta’s health has not changed since she turned 21.”

Lifting Binta is what her mother can’t do if left alone at night with no nursing care, which is what would happen. Several years ago, Binta’s mother had open heart surgery. Today she takes heart medication. Just 10 days ago she was rushed to the hospital.

“Due to an attack where my heart went faster, my heart rate went high. It’s just been frustrating. Well I’m afraid to die and leave Binta behind,” she said.

John Orzechowski at the Tennessee Justice Center in Nasvhile spoke with WATE 6 On Your Side via Skype. He and his group of attorneys are assisting Jallow in helping maintain Binta’s nursing care now that she’s 21.

“You know, this cap that TennCare has imposed is short-sighted and is really tearing this family apart. Our organization has been involved in working with the state in trying to appeal and address some of these issues. Good people at the state, at TennCare, have wanted Binta to be taken care of, but the policy itself is just unfair,” he said.

Jallow has been told by TennCare that a nursing home or a group home setting might be an alternative for Binta. However, her daughter’s care is intensive.

“A group home may be able to take care of someone with intellectual disabilities, but not the level of physical disabilities that Binta has,” said Orzechowski.

“I love my daughter. I’m doing what I can for her, but at the same time I’m going to fight it,” said Jallow.

Three years ago, Binta’s mother fought TennCare over some durable equipment that her daughter needed and won. In this present situation, TennCare is working with Jallow and the Tennessee Justice Center as the case is under review.