I'll Die If I Am Warehoused In a Nursing Home

If the state of Tennessee has its way, I could be ripped from my home and forced to live in nursing home away from my friends, family, and normal life. Please sign my petition asking Tennessee lawmakers to reverse recent cuts to the state’s Medicaid program so that disabled citizens like me can continue to receive care in our homes!

I am a 54 year old woman with muscular dystrophy, living happily in Tennessee. I use an electric wheelchair, have a trach, and use a ventilator. Despite my illness, I have led a fairly normal life since my disease progressed to the stage of full-time ventilator use.

I was able to live comfortably because I had access to Tennessee's Medicaid program, TennCare, which was created to better cover the uninsured poor in Tennessee. This insurance provided Private Duty Nurses who care for me in my own home. But as the years have gone by, TennCare has cut this service more and more.

For an adult, Private Duty Nurses are only being offered for 16 hours a day, rather than the 20 hours I was previously able to receive. Because of these cuts, I am going from living a normal life to being forced into a nursing facility!

I can't believe that at this point in my life the possibility exists that I will be warehoused in a ventilator unit, where I will live hundreds of miles away from my family, my friends, and my community, with little freedom to spend my time as I see fit.

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! 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.

Please help me urge my state of Tennessee and its TennCare program to change the rules on private duty nursing as relates to adults who use ventilators 24/7.

Thank you for reading my letter and showing concern for my plight. God bless you.

Dear Gov. Haslam and Director Darin Gordon,

Please reconsider the recent TennCare cuts to in-home nursing care, which limit Private Duty Nursing coverage to 16 hours a day. These cuts affect the most vulnerable members of our state, including Angela Butler Hibbitt, a 54 year-old woman with muscular dystrophy.

Despite her diagnosis of musclar dystrophy, Angela lives a happy, active, and fairly normal life as long as she can receive the care she needs. If her benefits are cut, she will have no choice but to be shipped away to a nursing home, far from her friends, family, and community.

Angela knows that her care is expensive, but she is more than just a number in a bank account! She participates in hercommunity and just wants to live as normal a life as possible. The amount of car she has been able to receive over the years has been cut again and again -- just because she havs a disability does not mean she should lose the freedom that her able-bodied neighbors enjoy.

If the limits on Private Duty Nursing are lifted, Angela and others like her will be able to remain connected to their communities, rather than being forced into isolation. Please strike down the recent budget cuts, or provide an affordable alternative, so that Tennesseans can continue to receive the medical care they need.

Thank you for your time and consideration.

Update #49 years ago
I was unexpectedly given my 20 hours a day nurse hours back only to find out it was because the designated home didn't have an available room. My joy was instantly dampened. Prayers please.
Update #39 years ago
Since TennCare cut my hours, my life has gone downhill. They have won, and my volunteer caregivers are tired. I am asking for prayers.
Update #29 years ago
I have ended my fight in court to keep my private-duty nursing. My case is unwinnable in state court due to a prejudicial judgment order. It can't be proven that my home care costs less. My battle is not over. I want disclosure of nursing home owners, lobbyists, and politicians who profit from sick and elderly; there are affordable options for us to stay at home and receive good affordable quality care. Please donate to help me. God bless. http://www.gofundme.com/angelasnursingfund
Update #19 years ago
I was told last week that I have lost my second appeal to keep my 20 hours of private-duty nursing hours. My care will very soon be shortened to sixteen hours a day. Please continue to put pressure on Gov. Haslam of Tennessee to make changes in services provided for ventilator users, so that we may remain in our own homes. Thank you so much for responding to my plight and others in my same situation. God bless you for your compassion...
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