David Rundle: KanCare experiment is costly for disabled

Sandy (I’m withholding her last name) is the mother of a 14-year-girl named Elizabeth who, like me, has cerebral palsy and is on KanCare. I met mother and daughter at a forum on Sept. 27 put on by ACT of South Central Kansas, a coalition of service providers to and advocates of people with intellectual and developmental disabilities.

I have a long-standing relationship with ACT and was asked to write a statement for the forum on how I almost lost 10 nights a month of sleep-cycle support last year. Sandy also spoke, along with two other parents. One mother told an absurd tale about how her managed-care organization (MCO) would pay for labor on her child’s wheelchair but not for the needed tires. A father told how his 27-year-old son has been on the waiting list for seven years.

State Rep. Jim Ward, D-Wichita, said the only thing the state will tell a person on a waiting list is that he’s on it – not how long he will be on it. (Ward, along with Democratic gubernatorial candidate Paul Davis, addressed the audience in person while Libertarian gubernatorial candidate Keen Umbehr sent a video. No Republican candidates showed up, though they were invited.)

Ward also noted that members of Gov. Sam Brownback’s Cabinet have hours to testify before the legislative KanCare oversight committee, but the public usually gets an hour, with each speaker limited to three minutes.

Sandy’s story could never fit in such a time frame.

Cerebral palsy gives Sandy’s daughter severe muscle spasms. For most of her life, Elizabeth could not walk. Then Sandy heard about a new surgery being performed by a St. Louis doctor. She got Medicaid to approve the procedure for Elizabeth. She has undergone at least two surgeries.

Along with the operations, the surgeon prescribed three therapy sessions a week – which the MCO trimmed to two a week – and regular follow-up appointments in St. Louis. Sandy had scheduled one for a Monday in May. At 4 p.m. the Friday before the appointment, a woman from the MCO who had never talked to Sandy called the doctor’s office and canceled it without telling Sandy.

Further, the MCO refuses more appointments in St. Louis. Instead, it wants Elizabeth to see a Kansas City surgeon, a doctor who neither does nor believes in the procedure the St. Louis physician performs. Even if he did, he would not know firsthand what Elizabeth was like before the first surgery.

Most Republicans oppose Obamacare for, among other things, allegedly placing the government between the doctor and patient and making medical decisions for both. I’d say this case fits that scenario. But the governor says KanCare is nothing like Obamacare.

The mother in the case of the denied tires appealed and won. Sandy has been appealing since late spring. Every time a court date is set, the state asks for a delay, she said.

Meanwhile, Elizabeth’s muscles cause her pain. She is not making the progress she could be making were she able to go to St. Louis regularly.

She is another part of Brownback’s experiment. This experiment may cost him his job, but it is costing Elizabeth so much more.

This story was originally published October 10, 2014 at 7:05 PM with the headline "David Rundle: KanCare experiment is costly for disabled."