Brownback to receive special invitation today at KanCare meeting

Dear Gov. Brownback, KanCare officials:

My wife and I cordially invite you to pull an eight-hour care shift in our home

Madame chairwoman, KanCare oversight committee members and distinguished guests, I come before you as a KanCare recipient, advocate for people with disabilities and policy adviser for the Greater Kansas City Spinal Cord Injury Association.

I would like to thank the oversight committee for the hard work facing the 11 members in helping to shape a managed-care system that is fair, balanced and fiscally responsible for thousands of Kansans like me.

As I have stated in my Oct. 7 testimony before this committee, under new managed-care rules in Kansas, I face a 76 percent drop in care, a move three of my doctors — primary care physician, MDA doctor and respiratory doctor — say is wildly unrealistic and a move my wife says will force her to file for divorce. Reductions in hours would also cause me to be forced to seek care in an institution.

I’m here today to cordially invite Gov. Sam Brownback, Sec. Shawn Sullivan of the Department of Aging and Disability Services — and any other KanCare officials eager to walk in my moccasins — to pick up an eight-hour shift caring for me at the rate of $9.30 an hour.

We are looking for bright, energetic and problem-solving caregivers who are willing to take on the task of care for a 49-year-old father of two with muscular dystrophy, type-1 diabetes and a ventilator to breathe. Don’t let that intimidate you. My 13-year-old son Christian is a whiz at Dad’s gear and my nine-year-old daughter Alora does blood-sugar readings and administers insulin.

We would expect the same skills that a home health-care agency expects from its employees: transfers to bed and toilet, dressing, bathing, oral hygiene, light housekeeping, meal preparation, laundry, errands/shopping.

Be prompt to your scheduled shifts and treat us the way you would like to be treated and we’ll hit it off. Non-smokers with a high-school diploma or G.E.D. and a driver’s license are the folks we are looking to hire and train.

What you can expect from us is a friendly and engaging home environment where the children are busy with their activities, my wife is working full-time and I am engaged in writing projects and national advocacy efforts for people with disabilities.

Personal care attendants are really the unsung heroes of the healthcare field. Without you, I am not able to live a quality life in my own home — and away from an institution. That means a lot to me and my family.

I am unflappably serious about this invitation and would welcome the opportunity to invite state officials into my world for an eight-hour shift.

In others news, the incongruities and contradictions inherent in my case has drawn increased state and national media attention. The links are listed in my written testimony.

A petition I have started on http://www.change.org asking Gov. Brownback to restore my full-time care to stay alive and care for my two children has attracted nearly 1,000 signatures — a majority of them from Kansas, but hundreds from across the country as well. In the search field type in “Brownback” and “Bullers” and the petition will pop up.

In the last week I have been compared by the state to a welfare mooch demanding a brand new car (health care) every year and then getting angry when the state decides to refuse to provide me the new car each year, one state official told reporter Steve Vockrodt in The Pitch, an alternative Kansas City newspaper.

I also have been told by the state that there is a finite amount of money and a finite number of hours “for people like me,” said the same state official. So if I receive my medically necessary 24/7 care, she said, then some of the 2,800 people on the state waiver waiting list won’t receive care.

But spending is a political priority — not a Darwinian struggle where only the fit survive and receive state funding. Where is our shared humanity and where are our shared family values, I ask Gov. Brownback. How can a Kansas Governor play God and divine who lives. And who dies?

Other problems remain:
— KanCare allows for-profit managed-care firms to trump doctor-ordered medically necessary care.
— Drastic reductions in hours leaves the medically fragile unattended and in life-threatening situations.
— Reductions in hours forces my wife, the family breadwinner and 10-hour-a-day employee, to be my caregiver from the time she gets home until the time she leaves the next day.
— Strict adherence to one-shoe-fits-all care allows no room for daily living functions like grocery shopping, doctor’s appointments, civic involvement, PTA meetings, Boy and Girl Scouts …
— It defeats the foundational underpinning of the disability civil rights movement now more that 40 years old that deinstitutionalized the disabled to live independently with necessary supports — a far less-expensive option.
— Home- and community-based services are significantly less expensive for taxpayers than warehousing people.

We have been sold an Orwellian dream that KanCare is a “great opportunity to put our principles into practice and … help children and the most vulnerable, strengthen families and encourage economic self-sufficiency.”

It’s time to wake up from that dream.

 

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