Tell Kansas Gov. Sam Brownback to restore my full-time care hours so I can stay alive to raise my two children.
PETITION | Gov. Brownback and Sec. Shawn Sullivan of the Kansas Department of Aging and Disabilities Services -- Please reconsider drastic cuts to my home-based services that will reduce my care hours from full-time to 40 hours a week -- a 76 percent reduction. My Muscular Dystrophy Association doctor, as well as my primary care physician -- both have followed my case for more than a decade -- say it is medically necessary I receive full-time care to survive. But no one in power in Kansas government has consulted my doctors for their medical opinion.
My managed-care organization, the for-profit United Healthcare, remains convinced that the drastic cut to my level of services is appropriate. But they -- and the state -- won't say why. To draw an analogy, it is as if my medical professionals are saying it requires four apples for me to live and the state says it is willing to give me one apple –- to die. My name is Finn Bullers -- email@example.com. I am a 49-year-old father of two children. I live in a ranch house on a suburbam cul-de-sac with my wife in Prairie Village, Kansas. I have a rare form of muscular dystrophy, type-1 diabetes and use a ventilator to breathe. I need daily and evening assistance to dress, toilet, bathe, prepare meals, transfer to bed and commode. I have no fine motor skills, so typing is a one-finger affair. Gripping is accomplished by pressing my palms together. I write my name with a pen secured in my teeth. I can bare no weight and need to be turned in bed every two hours.
My wife works up to 10 hours a day and is the family breadwinner and health-insurance provider. Kansas expects my wife to be my nurse 16 hours a day from the minute she gets home until the time she leaves for work, leaving no time for sleep and the children. Gov. Brownback was elected on a "family values" platform. Is this his definition of family values? Once in my power wheelchair I am prepared to challenge the day with hope and optimism. I volunteer in my children's schools. I ran a statewide presidential volunteer effort and I work as a national advocate on Capitol Hill for people with disabilites here and abroad. For nearly 30 years as a journalist, I played by the rules. I saved. I paid taxes. I contribute to my community. I bought a home to raise a family. Now, I'm being told by the state of Kansas that my life will be drastically altered because Gov. Sam Brownback wants to cut $1 billion over five years from the most vulnerable residents in Kansas -- the disabled. More disturbing: Kansas' Medicaid program, known as KanCare, is a pilot program. And if deemed "successful" in Kansas, the privatized, managed-care program will be exported to other states.
I have appealed my KanCare cuts. But if I lose my appeal, I am liable for the cost differential between 24/7 care and 40-hours a week -- money my family can't afford. If I lose, I lose more than money. I lose a 19-year marriage in an effort to recoup additional hours of care. I lose daily family connections. And I lose the dignity of being a father and husband as I face bankruptcy and the specter of being forced into an institutional warehouse. Kansas officials: Please, listen to my doctors' professional recommendation and restore my medically necessary 24/7 care. My life depends on it.
In a flash, anyone's life can drastically be altered from able to disabled -- a serious car accident, a fall or a freak turn of the head. It could be you. And if you live in Kansas or another privatized, managed-care state, you, a loved one or a dear friend could face a compromised life away from loved ones -- stuck in an institutional warehouse. Through the power of a national voice, let's compel Gov. Sam Brownback to listen to my medical professionals and re-instate my full-time care in order for me to take another breath -- and most importantly, raise my two children. Thank you for your heartfelt consideration.