Showdown over the shutdown

How our elected leaders are screwing disabled Americans

Reliance writer/editor

Just got this ironic email a few moments ago from the President’s National Council on Disability.

I was scheduled to testify in Topeka on Tuesday (Oct. 8) on my experience with KanCare, the managed-care program in Kansas that puts insurance companies in the driver’s seat over doctor’s orders for me and 379,999 other Sunflower state health care recipients.

No longer is that the case. This is not just a Kansas story, but a cautionary tale for the nation’s disability community. Here’s the email in my in box:

“Due to the Federal Government Shutdown, the Medicaid Managed Forum scheduled for October 8, 2013, is cancelled. We do hope to reschedule when the federal government reopens.”
— Gary Blumenthal, NCD Member

Had the brain trust on Capitol Hill not thrown a hissy fit and left the sandbox, here’s what I had planned to say:

Prairie Village man to discuss his KanCare experience
National disability council wants to gauge managed care in Kansas

The President’s National Council on Disability is scheduled to come to Topeka this month to hold panel hearings on how well the state’s new managed-care program is faring in Kansas.

As a KanCare state Medicaid recipient, advocate for people with disabilities and policy adviser for the Greater Kansas City Spinal Cord Injury Association, I will join panel discussions to be held Oct. 8 at the state Capitol to discuss my experience with the state’s new managed-care program.

Under new managed-care rules, my family faces a 76 percent drop in care, a move doctors say is wildly unrealistic and a move my wife says will force her to file for divorce, and as a result, tear our family apart.

“This is a great opportunity to put our principles into practice and … help children and the most vulnerable, strengthen families and encourage economic self-sufficiency,” said Secretary Rob Siedlecki of SRS when the state’s revamped Medicaid program, known as KanCare, was launched in November 2011.

“Through this plan, we will continue to identify very specific outcomes to improve the health of Kansans,” said Dr. Robert Moser, Secretary for Health and Environment.

For me, that “very specific outcome”to “improve” my care means that KanCare will reduce my level of care to 40 hours a week from my current 168 hours a week.

My current 24/7 in-home care — directed as a medical necessity by my team of doctors — is designed to manage my tissue wasting muscular dystrophy, insulin-dependent diabetes and a ventilator to breathe.

In turn, the state expects my wife — who works full-time to pay the bills and earn the family health insurance — to provide care 16-hours a day and on weekends, a level that is unworkable — and, as she says, “impossible.”

My doctors say it is imperative to receive that level of care or the quality of my  health — and life — will be severely compromised.

My wife is the family bread winner who bears the heaviest load for keeping the family together. No simple task, even with full-time nursing support to care for me.

There is no extended family living within a five-hour drive upon which we can rely for respite care.

The cuts are imminent, health officials say off the record, but refuse to acknowledge to me and those like me — the state’s most vulnerable.

The drastic cut in care hours are expected to be in place by Nov. 1, although no one will say for sure.

If this comes to pass, my level of care will go from 168 hours a week to 40 hours, a drop in care of 76 percent.

How is that even realistic?

The matrix used under new managed-care rules to determine the hours of care needed does not consider unexpected medical emergencies, frequent doctor visits, pharmacy runs, medical equipment fittings, grocery shopping and civic involvement.

These are all part of daily living and activities envisioned under the self-determination and independent-living movements that have been under way for decades.

I believe strongly in these hard-fought rights advocates before me fought to earn for my generation. It is now my obligation to see those strides do not erode while disability advocates of today work to meet the challenges of our time.

For disability advocates in Kansas, cuts under Gov. Sam Brownback’s new managed-care plan are the challenge of today.

Gov. Sam Brownback has said the state Medicaid program, revamped as KanCare, will save the state $853 million over five years and improve services for consumers, reports the Kansas Health Institute.

Says Brownback with a straight face: “These savings occur without cutting provider rates, throwing people off the system, or reducing essential benefits.”

So dramatic cuts in medical expenditures equals better quality care?

Short anecdote: In my case, the doctors on Team Bullers are essentially telling me that it takes four apples to keep me alive. And the governor is telling me the state responsible for my health will provide only one apple. Best of luck, love, Sam.

Back in a state public hearing in June 2012,  Celia Chase, who receives care through Medicaid home- and community-based services, had this to say to KanCare officials:

“You’ve already cut most of our benefits — what are we supposed to do? … Some of the people where I live think the government just wants to kill us off. Get rid of us. They literally think that.”

KanCare puts insurance companies — not doctors — in charge of medical decisions affecting the lives of Kansans with disabilities.

Critics like me suspect self-aggrandizing politics are at play.

In his bid for the White House in 2016, Gov. Brownback is setting the foundation for a presidential run by focusing his slash-and-burn tactics on cutting $1 billion in healthcare benefits in the next several years on the backs of the disabled, critics contend.

And if Kansas is any example, healthcare decisions are increasingly being made in corporate board rooms of America and political strategy meetings, not in the bedrooms and hospital rooms where nurses and clients live and breathe and make life-and-death decisions.

Everyone involved with the bureaucratic end of keeping me alive say quality care is the goal we all seek. Yet the rules made by politicians only end up destroying the quality of my life and the lives of the people who love me.

My wife is seeking a divorce. Disability is the motivator. And Kansas Gov. Sam Brownback is the cause.

Managed-care cuts will only put additional stress on my family.

Already, my children — strong, loving, independent and caring — have been forced to grow up way too fast. My 13-year-old son often teaches certified caregivers how to run my breathing machine, perform breathing treatments, inject insulin and do blood-sugar readings.

And under direct supervision, my nine-year-old daughter has been helping to inject insulin since she was four.

At the same time, my care agency, a nationwide firm with 500,000 clients in 43 states — “the nation’s largest private provider of services to people with disabilities; the largest one-stop workforce contractor and the largest privately-owned home care company,” the agency’s website says — has let me go as a client, effective Oct. 13. They say they don’t have the resources to adequately care for me.

Medicaid reimbursement rates, the say, allows them to only pay caregivers $9 an hour, a rate that ensures revolving-door care for clients, no continuum of care and increased expensive hospitalizations.

My first agency, another nationwide firm with franchises across the country, let me go because the profit margin to provide care was too small to make it worth their time, former employees confirm.

Without reasonable in–home healthcare support costing a small fraction of institutionalization, my life could easily be turned upside down by rule makers who know nothing about the people whose lives they are destroying.

For me, that means I will lose a 19-year marriage. I can’t be the involved father I am to my two children. And I can’t be the good advocate for people with disabilities that, along with my family, has given my life value.

It means my life.


You can reach Finn Bullers, policy adviser for the Greater Kansas City Spinal Cord Injury Association, at: or 913-706-2894.

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