Letter-writing campaign targets KanCare ruling

Prairie Village man fights major cut in care hours

Freelance writer/editor

Many of you kind folks have been following via social media the struggle my family and I are facing under KanCare to receive the doctor-ordered care I need to stay alive, raise my two children and be a contributing member of society.

It has not been easy.

But with a well-written letter to members of the state managed-care oversight committee, known as KanCare, perhaps together we can rattle some cages and make a difference — not just for me, but for the remaining 379,999 other Kansas who face a reduction in caregiver hours.

This effort becomes significantly more important considering the fact that KanCare is a pilot program for manage care and if it is deemed successful by Kansas politicians, it will be imported to other states across the nation.

Under KanCare, the goal of Gov. Sam Brownback is to cut $1 billion in health care benefits to the state’s most vulnerable in an effort to curry favor with the ultra-right wing faction of the GOP to propel him to the presidency in 2016.

KDADS Secretary Sean Sullivan said in several interviews that he personally approved my cuts and feels that they are completely appropriate. (see final TV spot.) “There is just no doubt that you are in their sites,” one consumer advocate told me via email after attending the meeting.

For years, Kansas has felt the former care system was being abused by those who did not deserve to receive disability benefits. And that indeed may be the case.

But the burden of proof lies with the state to prove that the former system was so irretrievably broken that a drastic rush to judgment overhaul was necessary — without the due diligence in place to avoid such catastrophic outcomes for me and 379,999 other Kansans with disabilities.

As we have seen on a recent “60 minutes” segment, there is indeed widespread examples of national social benefit fraud.

But the state of Kansas has simply put the bullseye on the back of the wrong target — one hardworking, play-by-the-rules Midwesterner with his nose to the grindstone and his eyes on the future of his two children.

Systemic cases of fraud should be the state of Kansas’ prime target — not a 49-year-old father just striving to take another breath and live to watch his children have their first date — or even graduate high school.

In several media accounts and personal contact with several top state officials responsible for disability issues, there is a group-think message delivered from the same sheet of talking points: “I’m sorry, Mr. Bullers, but this is our policy. We can not discuss the details of the case, but we feel comfortable with the reduction of hours.”

However, it is the details of my case that justifies the needed level of care my doctors all agree upon. And it is the details of the case that Kansas power brokers choose to ignore.

Consider just some examples:

My new, reduced-hours plan of care approved personally by Secretary Sullivan justifies leaving me unattended by stating I have a ramp to wheel outside my home — if I can even manipulate a door without the use of my hands.

And to do what? Knock on a neighbor’s door that I can’t access in a working-class neighborhood where both adults work full-time and are not home for up to 12 hours a day?

The care plan also indicates I can use the phone to call 911 in case of an emergency, say if my breathing tube was to become detached, which can, and does happen on occasion. In that scenario, no air is pushed by the ventilator breathing machine into my lungs and across my vocal cords, rendering me unable to speak.

How can I then place a 911 call? And even if emergency crews could triangulate the call through GPS technology to pinpoint my location, even the best paramedics could not reach me in time before I run out of air.

And die.

The new care plan also gives me approximately six minutes to eat dinner, a traditional family bonding period where issues of the day are discussed and upcoming plans and individual responsibilities are doled out.

I am given two minutes a day for complete oral hygiene and an hour block to toilet only during specified hours allotted by the state. I have tried many times to reduce my liquid intake (something my doctors strongly discourage) and regulate my body function to such ascribed time frames. But as has been said, “When ya gotta go, you gotta go.”

I certainly hope my request to defecate when necessary is not what Secretary Sullivan defines as abuse of the state’s Medicaid system.

Asking state of Kansas health-care regulators to examine the details of my plan for the inconsistencies described above is tantamount to try and reason with a totalitarian state. Simply put: The government has forgotten that government is the people and derives it’s power from the people they are elected by — and represent.

For nearly 50 years, I have always been a nose to the grindstone, hard-working Midwesterner who values a solid work ethic and the obligation to contribute to society.

Now, however, I find myself on the receiving end of social benefits that many in Kansas feel the disabled do not deserve. I am not asking to get rich,  I am only asking to survive, provide for my family and be given the opportunity in the job market to compete on a level playing field.

My team of doctors all concur that my high level of care is absolutely necessary to keep me alive and contributing to our society.

That, however, does not sit well with the bean counters at the insurance company. Folks like Secretary Sullivan have no medical training to make such drastic cuts based on an inefficient health-care bureaucracy the state helped to create in the first place.

I’m asking the state of Kansas to respectfully remove the Medicaid fraud target on my back that has me in the crosshairs of state regulators and decision makers who are aiming powerful and life-threatening weapons in the wrong direction.

Please take a moment to let Kansas leaders listed below know how you feel. Me and my family would greatly appreciate it.

TO: Rep. Robert G. “Bob” Bethell Joint Committee on Home and Community Based Service and KanCare Oversight

Some possible talking points for your letter:

-– KanCare policy is too rigid to allow for doctor-ordered medially necessity care.

— In some cases, a reduction in hours does not fit the family dynamic of a full-time working spouse.

— Strict adherence to one-sue-fits-all care allows no room for moral daily living functions like grocery shopping, doctor’s appointments, civic involvement, PTA meetings, Boy and Girl Scouts …

— It forces family members working eight-hour days to use the remaining 16 hours of the day to be an on-call caregiver, leaving no sleep time.

— 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 for taxpayers.

— Home- and community-based services are significantly less expensive for taxpayers than warehousing people with disabilities in institutional settings.

Sen. Mary Pilcher-Cook (R-Shawnee), chairwoman

Rep. Dave Crum (R-Augusta), vice chairman

Sen. Laura Kelly (D-Topeka), ranking minority member

Sen. Jim Denning (R-Overland Park)

Sen. Marci Francisco (D-Lawrence)

Sen. Michael O’Donnell (R-Wichita)

Rep. Barbara Ballard (D-Lawrence)

Rep. Willie Dove (R-Bonner Springs)

Rep. John Edmonds (R-Great Bend)

Rep. Jim Ward (D-Wichita)

Rep. Ron Ryckman Jr. (R-Olathe)

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