“Don’t Warehouse Me in a Nursing Home“

2014 920 care sw(Image: Medical care via Shutterstock)The state of Tennessee has already made it impossible for loving, married couples to remain together when one of them is sick and medical insurance literally keeps him or her alive. But by refusing to expand Medicaid, as so many other states across the country have done, Tennessee is being forced to make cuts that are affecting those with illnesses or disabilities who previously had been living independently in their own homes, forcing them into assisted living situations instead. Care2 member Angela Butler Hibbitt is one of those people affected by these cuts, so she decided to fight back.

Angela Butler Hibbitt has been struggling with muscular dystrophy since she was a child, and in 1996 her pulmonary system weakened to the point where she was required to use a ventilator. Still, she has spent almost two decades despite that living in her own home — at least, as long as she has some assistance. That assistance had come through private nurses, two shifts each day, which left a four hour period in the evening that she would have friends or family members come over to help.

The private nurses were provided by TennCare, the state’s Medicaid program. But that program has been looking for places to cut costs, especially in light of its refusal to accept federal funds to expand Medicaid, and private nursing care is one place they have decided to do it.

Changing nursing allotments from 20 hours a day to 16 might not seem that significant on the face of it, but for a person like Butler Hibbitt, who has been independent all her life, those extra four hours is the breaking point for her to be able to reside in her own home. It doubles the hours a day that her support network would be required to commit to her care, leaving her with the grim prospect of being sent to a nursing home far away from everything and everyone she currently knows and loves. The risks of being left alone, however, could mean death.

“Anyone depending on a ventilator must not be left alone in case a tube comes undone, or the patient needs to be suctioned, which is removing secretions from the airway,” Butler Hibbitt explained to me via email. “The vital parts is to have someone in the home who is educated enough to resolve any problems with the ventilator because this equipment is life-saving.”

While the risk of being at home are extreme if she doesn’t have someone to help her, the alternative — a full time care facility, including a bed in a shared room, is a grim one. “The differences between staying in my home and going to facility are vast,” she said. “I have created a home where I can personally do whatever I choose. I can have guests, I can decorate, I can eat when I want or what I want, I can regulate my own temperature like any homeowner, I can have pets if I like, I can leave or come home whatever I want asking no one’s permission, I can plant flowers, I can have my yard any way I like, I can put whatever furniture I like, or paint if I like, I can simply live my life as I choose.”

“I would not be able to see my family nor where I have any of the privileges that I have in my own home,” she added. “I don’t think I could find any happiness there.”

Now, she is asking the governor to put her own quality of life ahead of whatever cost savings he believes he will obtain through cutting the nursing hours of those on home care. “I understand that my care is expensive, and it seems that TennCare is focusing primarily on that fact. But please believe I am so much more than a number!” said Butler Hibbitt in her petition to the governor. “I am a human being: a woman, a friend, a daughter, a wife, a girlfriend, a pet mother. I am a person who will listen with all her heart to other’s problems, a person who can pray for others, a person who can make you laugh, a person who can attend Tennessee Titans football games, and goes grocery shopping. I pay my bills, care for my home, and I am capable of speaking up for myself and for other severely disabled citizens. I participate in life the same way as every other able-bodied person.”

Ironically, just two years ago, the state started a pilot program through TennCare to help assist people and keep them in their homes, living independently, and out of nursing facilities. At the time, the program was seen as a groundbreaking way to both help keep people out of nursing homes and even save the state costs. Now, the state has a new way to “save costs” — on the backs of people like Butler Hibbitt.

Please sign and share Angela Butler Hibbitt’s petition if you believe her quality of life and independence are worth more than the state of Tennessee saving four hours a day in nursing costs.

If there’s something in your local community or worldwide you’d like to address, consider starting your own petition.