KNOXVILLE, Tenn. (WATE) — The mother of a disabled teen is devastated by a recent development in TennCare. Cheyenne Powell says either she or her husband will likely have to quit work, so they can be home with their daughter’s licensed health care provider.
Since 2015, Powell has been able to work while a home health care nurse was with her daughter during the day. Now, a new crackdown is being enforced on an existing rule and her daughter can no longer be left alone with the provider. The rule requires a second adult must be present when her daughter is home.
Powell and her 15-year-old daughter Makennah have a special bond. Makennah is disabled with severe autism and she has a rare disorder called DeGeorge Syndrome. This recent enforcement by TennCare caught Powell by surprise since a provider has been with her daughter without a person over 18, for the last eight years.
“She’s had multiple surgeries, including open heart surgery when she was a 26-day-old baby. Currently, she has a seizure disorder and her nutrition is supplemented via a feeding tube,” said Powell. “The hardest thing is to know that your child is sick and there is nothing you can do. You rely on doctors and hope that they know the right care for her is all you can do. You try to live a normal typical life. We just want her to have just a good quality of life as long as she can.”
A few days ago, Powell and Makennah’s full-time home health care provider were together over fall break. For years, TennCare paid for Makennah’s nursing care while Powell and her husband were at work. Then last month, Powell received a notice of change for her provider. It has turned her life upside down.
“I can’t have a nurse in my home with her alone. I guess it’s always been a TennCare policy, but I’ve had nursing for 10 years now and I’ve never had this issue. So that means either me or her stepdad or another adult has to be in the home with her and her nurse,” said Powell. “Well, one of us will not be able to work. And because she walks and talks, this is the policy. So I don’t know what we are going to do.”
“We don’t have anybody,” she said. “The family I do have here works their own full-time job.”
The rule sent to Powell states “Home health care providers shall provide services ordered by a treating physician and shall not provide general child care services, such as cleaning up or preparation of meals.” The TennCare standard went on to say, “A responsible adult (other than the home health care provider) must be present at all times unless the child is non-ambulatory, has limited ability to interact with caregivers, or has needs that fall outside the scope of medically necessary TennCare covered benefits.”
“She’s 15, but she functions like a 5-year-old,” said Powell.
In a response to WATE’s inquiry, TennCare said the existing rule has been in place for many years to protect both the child and the service provider. Powell has a simple message to the state.
“Change this. It’s like they’re punishing us for having a child that has special needs. All we want to do is support our family the best way we can. And that’s working,” said Powell.
Powell said when she’s at work will have to rely on friends, and other people, to be that second person with Makennah’s health care provider. Presently, the 15-year-old attends her local high school. She’s a special needs student. Because of the extra care that she requires, her healthcare provider goes with her to school.