KNOXVILLE, Tenn. (WVLT)-- Taking care of an elderly parent or disabled child is something that many of us face everyday. The state provides these families some assistance but not enough for one family with a disabled daughter.
Every Friday Carol Smith goes to "The Next Chapter Book Club" where she reads and meets friends with the help of her nurse.
Jean Smith, Carol's mother said "Carol has severe Cerebral Palsy. She's totally dependent on someone for all her care."
At 37 years old she needs help going to the bathroom, eating, and even getting out of bed. Her parents use to take care of all that for her until her mother was diagnosed with a muscle disease, Charcot-Marie-Tooth.
"I've been getting weaker over the years and I can't lift Carol anymore. My husband is in his 70's and has a bad back. We need the nurse's help." said Jean
For more than 5 years, a nurse has helped 112 hours a week but recently the state sent a letter saying they'll have to cut some of her care.
Jean said "They said we can only have 27 hours a week and the change will happen Monday March 25th."
It's a change that will leave Carol helpless without the ability to go to the bathroom, go to the book club, the pool, or church with her family.
"We don't know what to do. We took care of Carol for 31 years by ourselves and didn't ask for any help. Now we need the help and we don't qualify ." Jean said
The letter from TennCare explains why they'll stop paying.
"TennCare Rules say private duty nursing care is not covered for anyone age 21 or older on TennCare UNLESS: You are ventilator dependent for at least 12 hours each day, OR You have a functioning tracheotomy and need certain other kinds of nursing care too."
It goes on to say "Our records show that you are 21 or older and don't have the kinds of medical problem listed above. So, we can't pay for you to have private duty nursing care [TennCare Rules 1200-13-13-01(99)]."
The letter does give the family the option of "CHOICES" a TennCare program for long term care.
It's explained on the TennCare website as "Long-term care includes help doing everyday activities that you may no longer be able to do for yourself as you grow older, or if you have a physical disability-like bathing, dressing, getting around your home, preparing meals, or doing household chores"
The family doesn't want to use this program because they say she needs a nurse . Carol's doctor wrote an order saying that she needs a nurse not a caregiver.
We made several calls to the State Department of Intellectual and Developmental Disabilities but as of 4:30 p.m. on Friday we haven't heard back from them.
When we asked Carol what she would do without the nurse's help, she welled up with tears and told us "I'll go to bed and won't want to get up anymore."