By Consumers For Quality Care, on October 3, 2018
Photo by Heidi de Marco/KHN
Adam and Rondi Kauffmann are battling TennCare, Tennessee’s Medicaid program, to get care for their disabled daughter, FOX 17 News reports. Adelaide, the couple’s 10-month-old daughter, has Spinal Muscular Atrophy Type 1. The disease leads to a weakness and lack of control over the muscles and causes breathing concerns. Before medication came on the market less than two years ago, babies with the disease were not expected to live longer than a year.
Adelaide needs around-the-clock care. While Rondi works as a physician at Vanderbilt, Adam cares for Adelaide at home. Most of the medication and equipment the family needs to care for Adelaide is covered by their insurance through Vanderbilt. With the correct medication, care and equipment, Adelaide has been beating the odds and continues to get stronger.
“We basically run a pediatric ICU in our living room,” he said.
However, the family still needs a night nurse to monitor Adelaide’s breathing while she sleeps.
“There was a three and a half-month period where my wife and I didn’t sleep more than three hours a night because one of us had to be awake at her bedside, constantly providing airway clearance, suctioning, and cough assist for the child so that she did not choke and stop breathing in the night,” Adam said.
While the Kauffmann’s doctors have recommended a night nurse to help care for Adelaide, the family says they’ve been repeatedly denied by TennCare. The state says that the family’s income precludes them from coverage; the Kauffmann’s say they cannot afford the night nurse on their own.
“It feels like we’re being penalized for being a family who has done the right thing, worked really hard, sacrificed a lot to get where we are,” Adam said.
Now, the Kauffmanns are faced with making significant and devastating decisions to get coverage.
[T]he Kauffmanns say they are faced with three options: have Rondi quit her job (the family’s main source of income) and live off of government assistance, Rondi and Adam get a divorce, qualifying them for TennCare under the unemployed parent, or move to a state with a waiver system.
For now, the Kauffmanns are trying to focus on advocacy to bring about change. They hope they can work to get a waiver option in Tennessee – which exists in many other states – to allow for exceptions for children who need care.
“They forgot about the fourth option, which is to fight, to fight for what we know is right, and fight for the kids who can’t fight for themselves to get the care that they need in this state,” Adam said.