On Christmas Eve, Bullers’ case manager at UnitedHealthcare came to his home to let him know that the company would be reinstating the round-the-clock in-home assistance he says he needs to survive.
Bullers, who suffers from a rare form of muscular dystrophy, received full-time in-home care to help him with daily activities, like cooking, eating, using the restroom, and administering treatments. But under KanCare, the Kansas Medicaid administration program that launched in January, Bullers had been told his in-home care was scheduled to be reduced from round-the-clock to 40 hours per week starting Nov. 1.
Bullers launched a very public protest, claiming the reduction would essentially split his family apart by placing an unmanageable burden on his wife, who works 40 hours a week and provides the family’s primary means of support. He started an online petition, and even invited Gov. Sam Brownback to work a shift as a caregiver in his home.
Bullers sent out a message Chrismas day alerting media to the development:
…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? We’re a big organization where change moves slowly, my case manager told me just before Christmas.
This is all new to us. We’ve learned a lot this past year, she said of her employer’s roll out of for-profit care in Kansas. We’ve learned that each case is unique and health care is not one size fits all, she said….
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 heaven’s 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 won’t tolerate unbridled profiteering at the expense of quality caregiving.