Prairie Village man to discuss his KanCare experience

National Council on Disability wants to gauge managed care in Kansas

By FINN M. BULLERS
Freelance writer/editor

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

Under new managed-care rules to crack down on “abuse,” 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.

I now receive 24/7 in-home care to manage muscular dystrophy, insulin-dependent diabetes and a ventilator to breathe. My doctors say it is imperative to receive that level of care or the quality of my  health — and life —  will be severely compromised.

Yet state Medicaid cuts under KanCare are expected to reduce my level of care to 40 hours a week with my wife expected to provide care 16-hours a day and on weekends, a level that is unworkable — and, as she says, “impossible.”

My wife works full time and is the family bread winner who provides health insurance, helps care for the children and 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.

Tagged KanCare, the program 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 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. 12. They say they don’t have the resources to care for me adequately.

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.

DISABILITY COUNCIL TO MEET IN TOPEKA

The National Council on Disability is an independent federal agency that advises the President, Congress and other federal and state agencies regarding policies, programs, practices and procedures that affect people with disabilities.

The meeting will be held at the Kansas State Capitol – Old Supreme Court Chambers, 300 S.W. 10th Ave., Topeka. The panel is scheduled from 9:30 a.m. to 11 a.m.

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