New TennCare rule penalizes parents of disabled, chronically ill children
By CLAUDIA PINTO
Staff Writer - THE TENNESSEAN
Christa Tillotson says she has two bad choices.
She can quit her job and stay at home so her chronically ill 6-year-old can get the at-home nursing care he needs. Or she can keep her job and place him in an institution.
The dilemma stems from a new TennCare rule that prohibits nurses from treating a child in the home unless another adult is present - a rule several parents fear will force them onto welfare.
"I think it's ludicrous," Tillotson said. "Why should I be there when he's with a skilled nurse who is licensed to take care of him?"
Tillotson's son, Aiden, 6, has had a liver transplant, a stroke and severe seizures that caused brain damage, she said. He receives at-home nursing care from TennCare, the state's insurance program for the poor and uninsured.
Tillotson, of Lebanon , said she would never consider putting her son in an institution so she'll quit her job and try to get welfare.
Policy defines role
Dr. Wendy Long, TennCare's chief medical officer, said the new policy simply spells out what TennCare's intent has been all along: that nurses are medical professionals, not housekeepers or baby sitters.
Long said children have needs that go beyond medical treatment - such as being entertained and having meals prepared - and it's the parent's responsibility to provide those themselves or to hire a baby sitter.
"Nurses are there to provide skilled nursing care," Long said. "It's not the responsibility of the nurse to baby-sit."
"What we've had happening, is that parents are exiting - sometimes leaving the nurse with not just the sick child but with other children."
States are required by the federal government to offer certain sick children at-home nursing services.It was not immediately known how many such children there are across the state.
Marjorie Bristol, an attorney with the Tennessee Justice Center, a law firm that represents TennCare enrollees, said she's had several phone calls from parents fearful they will have to give up their jobs and uncertain when the new rule will hit them.
The new rule was supposed to take effect in December.
However, Tillotson says she is still getting nursing services for her son and
hasn't heard from anyone telling her to comply.
"It's nerve-racking for them not knowing when this is coming," Bristol said. "They're scared. They have no idea what they are going to do."
Wilson said no one should be getting these services if an adult isn't in the home. If they are, Wilson said, most likely the managed-care organizations that oversee TennCare services haven't adequately communicated with the home-health care providers.
Some express frustration
Sadiatou Barrow, of Knoxville , is one of the parents who has been notified that an adult must be in the house while the nurse is there. TennCare provides 84 hours of private duty nursing each week for Barrow's daughter, Binta, 11, who is blind, mentally retarded, unable to walk or talk and has seizures daily.
"Most families can switch responsibilities between a husband and wife," Barrow said. "I'm a single parent."
"What do they want me to do?" she said sobbing. "Do they want me to be on welfare? Do they want her to go to an institution? Either way it will cost them money."
As a temporary solution, Barrow's son, Lamin, 20, has dropped out of Tennessee Wesleyan College in Athens , Tenn. ,to stay home with his sister, while the nurse is present. This allows his mother to work. But Lamin Barrow said he may lose his scholarship if he doesn't return to college by summer.
"I just sit here," he said. "It's a waste of time."
Wilson said a possible solution is for these families to apply for Families First, a state program that provides financial assistance for childcare in day-care centers. For more information call 1-866-311-4287 .
Bristol expects few families will benefit.
"Most of these children are too medically fragile to go to a day-care center," she said.
Long said spelling out the intention of the benefit was necessary to prevent misuse and abuse. She said TennCare received "considerable" complaints from nurses, who were being asked to do things outside of their nursing duties.
"All we are attempting to do is define boundaries," Long said. "They are nurses, not cooks or housekeepers, or baby sitters."
THE TENNESSEAN