If I believed in miracles, this would most definitely qualify as a doozie of a moment.
By Finn Bullers
Special to The Star
One year ago, 2013 started in a very bad way for the Bullers family of Prairie Village. However, the year has redeemed itself in the final minutes of the fourth quarter and ended quite remarkably.
It has been a tangle of policy and political gamesmanship up until the two-minute warning a game 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.
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 care-giver 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 mid-year, I have written more than two dozen news articles and columns, testified at three hearings, wrote hundreds of emails 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, drum roll, 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 roll out 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.
Now 50, I advocate on Capitol Hill and work as the policy adviser for the Greater Kansas City Spinal Cord Injury Association. I write the Squeaky Wheel column for the United Spinal Association at www.usersfirst.org and continue to freelance write, edit and do small-scale video production.
This year has been consumed with our ongoing advocacy efforts to right a wrong. It has taught me to fight the good fight, stand on principle and speak truth to power. These are the lessons I built a journalism career upon for three decades to help afflict the comforted and comfort the afflicted but never needed as my own personal First-Aid kit.
Lessons 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 don't stand up, you get the government you deserve.
And for heavens sake, vote early and vote often.
Self advocacy starts with a germinating seed in fertile ground that slowly grows into a towering oak one dark thunderstorm following one bright, glorious day of sunlight, the greatest disinfectant for all toxic public policy.
So let it be recorded that on Christmas Day 2013, hope was renewed for thousands of Kansans with chronic disabilities who are fighting for the quality care they deserve.
And although there are still health care battles to wage in Kansas and across the country, for-profit care providers are now on notice that there is a growing voice of opposition that wont tolerate unbridled profiteering at the expense of quality caregiving.