Correction: An earlier version included an incorrect number of disabled Kansans on Medicaid.
If I believed in miracles, this would most definitely qualify as a doozy of a moment.
2013 started in a very bad way for the Bullers family. However, the year redeemed itself in the final minutes of the fourth quarter and will end quite remarkably.
It has been a tangle of policy and political gamesmanship up until the two-minute warning a game that color commentators could easily describe as full-circle karma.
On Jan. 1 in the infinite wisdom of the state of Kansas Gov. Sam Brownback launched an initiative that would continue to dismantle the foundation of moderate Republican politics in the Sunflower State.
His target: 380,000 Kansans on Medicaid, including about 20,000 on the states Medicaid disability waivers.
His goal: drive down costs while improving health care outcomes.
His method: reduce the rising cost of health care by $1 billion over five years.
His achievements: failure to see that managed-care organizations pay large and small health care providers in a timely fashion, forcing smaller shops out of business; reducing aid to children in poverty while the number of children in poverty soars; refusing to reduce the states waiting list for disability services that in some cases is up to 12 years long; drastic cuts in caregiver hours.
KanCare Brownbacks grand experiment to allow three, make-a-buck health care super firms to manage life-and-death decisions for the poor and chronically ill left our family for the first six weeks of the year with zero health care support. That put an incredible strain on our family.
This year has been consumed with our ongoing advocacy efforts to continue my 24/7 care and beat back a plan by the state of Kansas to reduce my care by 76 percent to only 40 hours a week, despite recommendations from three of my doctors that full-time care was critical for me to survive and help raise our two children.
Upside: The experience has fueled my new calling as a disability-rights advocate in an effort to speak for those who cant. Since midyear, I have written more than two dozen news articles and columns, testified at three hearings, and written hundreds of e-mails and sparked more than 20 newspaper articles, radio spots and TV appearances across Kansas to drive home one message: KanCare is not ready for prime time.
And, drumroll, please on Christmas Eve day, my UnitedHealthcare case manager came to our home to tell us that her firm had reinstated my full-time care.
The sun had never shined brighter.
Why had United reversed course?
Were a big organization where change moves slowly, my case manager told me just before Christmas. This is all new to us. Weve learned a lot this past year, she said of her employers rollout of for-profit care in Kansas. Weve learned that each case is unique and health care is not one-size-fits-all, she said.
What a Grand Canyon sigh of relief.
Lessons I learned: Stand up. One voice can make a difference. You can fight city hall. And the state Capitol. And, yes, even Congress, I was reminded. And if you dont stand up, you get the government you deserve.
And for heavens sake, vote early and vote often.