I’m usually not a big fan of shaming. I think the things most of us feel ashamed about are silly. But shame isn’t always a bad thing. Some people should be ashamed, and the only way that will happen is if they’re called out about it. Loudly.
Take, for instance, some members of the Tennessee state legislature, regarding something called a Katie Beckett waiver. It’s great example of shame in action.
Born in 1978 in Cedar Rapids, Iowa, Katie Beckett contracted encephalitis when she was four months old. This left her with multiple disabilities.
As of this year, Tennessee was the only state without a Katie Beckett waiver program.
Her parents were willing and physically able to care for her at home, but three years after her diagnosis she still remained hospitalized. That’s because under the ridiculous Medicaid rules at the time, if Katie went home, Medicaid would no longer cover the cost of her care. The incomes of her working parents were too high to qualify for Medicaid but too low to pay for Katie’s ongoing care and medical expenses.
This Medicaid rule was so ridiculous that even President Ronald Reagan recognized it as such. He held a press conference in 1981 to point out the bureaucratic absurdity of Katie’s case. The next day, his Department of Health and Human Services granted the state of Iowa a “waiver” from the rule, which allowed Medicaid funds to support Katie at home. She went home.
In 1982, Congress passed legislation permitting states to use this waiver to extend this same support to all families with disabled kids in this same situation, regardless of income. As of this year, Tennessee was the only state without a Katie Beckett waiver program.
And that’s a big deal for people like Jessica Fox of Gray, Tennessee. Last year, Jessica’s family started really struggling financially. Her four-year-old daughter, Claire, was born with Cri Du Chat Syndrome and congenital heart disease, which meant she had open-heart surgery when she was four days old.
Claire continues to have a lot of expensive medical complications. Jessica is employed as a nurse and her husband, Sean, teaches at a local university, so they have private health insurance. Claire’s medical expenses not covered by their insurer were picked up by TennCare, Tennessee’s Medicaid program.
But last year, Claire was kicked off TennCare because her parents’ incomes were too high. “When TennCare was gone we had to stop her private therapies,” Jessica tells me. “We also had to start paying for feeding tube supplies. Insurance pays a 70/30 amount. It all adds up. Copays for nineteen specialists adds up.”
When Jessica learned about the Katie Beckett waiver last summer, she knew it was the answer to her family’s problem. It would mean Claire would again be eligible for TennCare. So she joined with Tennessee families in the same boat and other disability activists in an effort to shame state lawmakers into joining the twenty-first century. She went to public forums held by her state representative and his opponent in the 2018 election and spoke up. She took Claire to the Capitol and joined other families for a lobbying day to demand a Katie Beckett waiver.
All this got a lot of media attention. So on April 23, the state House of Representatives voted unanimously to appropriate $27 million to fully fund a Katie Beckett waiver that would cover about 3,000 Tennessee kids. But then a state Senate committee held strong in its utter shamelessness. It voted to allocate $15.6 million to cover only about 300 kids.
Well the angry families and the media didn’t go away. In the end, the senate capitulated to human decency and voted to adopt the House version.
“The difference it will make to my family,” Jessica says, “is that we won’t have to limit and prioritize what we can provide to Claire. We can give her what is medically ordered by physicians. It means that future families won’t have to agonize the way we did. Maybe someone can rock their newborn with chest tubes, monitors, and feeding tubes and not worry about health care for their permanently disabled child. “
The legislation awaits the signature of Republican Tennessee Governor Bill Lee. Let’s hope he has some sense of shame.