Kansas governor plays God with disabled

‘That’s just the way the world works,’ state says

Freelance writer/editor

What’s happening in Kansas could be Anywhere, USA.

Healthcare costs are crazy high. The United State quality of care ranks below some developing countries, yet opinion polls reflect that we perceive our quality of care to be No. 1.

Where’s the disconnect?

Look no further than the Sunflower State to reflect our nation’s healthcare hypocrisy, misdirected priorities and outright Orwellian logic that defies moderate politics once rooted in heartland America.

It is as if black is white, compassion is reduction and Hippocrates’ “do no harm” oath has become Kansas Gov. Sam Brownback’s “make more cuts” mantra. The governor wants $1 billion in Medicaid cuts over five years to “improve outcomes” for the state’s most vulnerable.

But where is our shared humanity? Where are the promised family and faith-based initiatives the governor flogged while riding a white steed into political office?

My story could be Joe Anybody’s story.

Muscular dystrophy robbed me of muscle control. That’s my reality. I accept that, although I am not defined by it. Muscular dystrophy, however, has not robbed me of my intellect and my ability to speak truth to power.

I now receive 24/7 care to toilet, bathe, dress, groom, transfer in and out of bed and to the commode — a care level my doctors say is critical for my survival.

I also need help to manage my type-1 diabetes, my breathing machine, light housekeeping, meal prep, laundry and errands — basic life tasks others take for granted. My wife and I are raising two children, ages nine and 13.

Kansas wants to cut my care to 40 hours a week — a 76 percent reduction. I have appealed the decision, but its a high-stake’s gamble.

If I lose my Jan. 22 appeal then my family is responsible for the cost of my current 24/7 care minus the cost of the state’s offered 40-hour-a-week care. It’s a risk with money I can ill afford to lose — just to fight for my rights.

Where in our Constitution does it mandate fee-for-fight justice? All the while, Kansas has cast me as the poster boy for Medicaid abuse.

People in the disability community do not demand special rights, says Anita Cameron of Chicago, a 27-year ADAPT member: “It is not OK to treat (the disabled) like garbage and expect that we accept it. We are human. Our lives are worth every bit as much as yours.”

Anecdotal stories far worse than mine abound.

But fear of retribution — cuts in care, appointments set years in advance, placement on years-long waiting lists — or simple ignorance of how to be your own advocate inhibits those facing cuts from speaking out.

Others simply can’t talk.

Listen in on a conversation I had with Angela de Rocha, director of communications for Gov. Brownback’s for-profit, managed-care plan — “KanCare.” Critics have another name for it — “Kan’tCare.”

Finn: “Angela, I would like to know who has reviewed my case that my cuts are based upon.”

Angela: “I don’t know who they were. I don’t want to get into a debate with you.”

Finn: “How can I make a case if I don’t know the expertise of those who want to cut my hours?”

Angela: “One of my jobs here is to guard the reputation and well being of our employees and I don’t want them to be a part of this media circus. I don’t want them targeted.”

Finn: “But my family is upset. I have been targeted. They want answers. They are concerned.”

Angela: “Mr. Bullers, there will be no change in your service until these discussions are through. … So I don’t know why your family is upset.”

Finn: “But you can understand why I’m asking these questions.”

I never got my query answered.

De Rocha described that when KanCare recipients receive “more care than they need” that “wastes” money and that can be used to reduce the 2,800-person waiting list for Kansas’ physical disability waiver program.

Angela: “There is a finite amount of money available. Therefore, there is a finite number of (care) hours available. So if someone is getting more care than they need to live independently in their home, then someone else isn’t getting those hours. … That’s just the way the world works.”

Finn: “So we’re robbing Peter to pay Paul”

Now we know. The Red Sea of Kansas politics has been parted into a finite set of Darwinian survival-of-the-fittest spending priorities where some live. And some die.

And Kansas Gov. Sam Brownback has convinced himself that he has the wisdom from God to know the difference.

Reach Finn Bullers at: finn.bullers@aol.com or 913-706-2894. Consider signing his petition at http://www.change.org.

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