A couple in Dickson County are facing the unknown as they fight for a change in the TennCare System.
Adam and Rondi Kauffmann are parents to 10-month old Adelaide, who has Spinal Muscular Atrophy Type 1. A genetic disorder that can be detrimental at the early stages of life.
“This is a condition which leads to progressive loss of the function of motor nerves,” Rondi says of her daughter’s condition, which explains why their daughter struggles to eat, cough, move, or even breathe on her own.
“We basically run a pediatric ICU in our living room,” Adam says. Due to Adelaide’s condition, she requires several daily treatments in addition to medical equipment and therapies which requires around-the-clock care. “Our daughter is on a feeding tube…she requires something called a cough assist…she gets regular nebulizer treatments…the most frequent form of care is suctioning. The weak cough that she has is often enough to dislodge stuff and start to get it up, but she can’t do anything with it and she also has problems with her swallow,” Adam continues when describing their daily care routine with their daughter when she’s not battling other issues.
A side-effect from any type of Spinal Muscular Atrophy is that any small illness, such as rhinopharyngitis, also known as the common cold, could send Adelaide to the ICU.
“There was a period for three months where [Rondi] and I didn’t sleep more than three hours a night because we were at her bedside 24 hours a day,” Adam recalls of one of Adelaide’s most recent declines in health. “No family should be expected to try to live a life like that…it’s not safe for others around you, it’s not safe for you and your family, it’s not a sustainable situation.”
Adam has turned into Adelaide’s daytime care-taker while Rondi works outside of the home to provide for the family of five. Rondi’s primary insurance provided by her employer covers many aspects of Adelaide’s medical assistance, but there are several things that their insurance doesn’t cover, including something Adelaide’s doctors say she needs; an in-home nurse.
“[After Adelaide’s sickness] is when we began looking into some kind of nursing help and we realized that’s not something covered by our insurance plan.” Adam says. “We did that math, if you hired a night nurse for eight hours a night, five nights a week…it costs about $150,000 a year.”
It was then that the Kauffmanns decided to look at other routes in an attempt to get secondary coverage; one that would get Adelaide the medical help she needs. After repeatedly being denied and put on ever-growing waiting lists, they’ve been left with three options: divorce, rely only on government assistance, or move.
“We can get a divorce, and then the parent who doesn’t have a job gets custody and then you’ll get coverage through TennCare, or [Rondi] can quit her job and basically put the whole family on TennCare, or move out of the state.” Adam says. If they moved, they could move to a state with a waiver system, something Tennessee doesn’t have yet, that would allow their daughter to receive state healthcare regardless of family income.
However, they’ve chosen a fourth option: fight for a change.
“We like Tennessee, we like living here. We chose to come here when we had the choice to and I think the right answer is not to just run away; I think it’s to try and fight to make things right,” Adam says.
The Kauffmanns are now working with other families in the state and advocacy groups to put together a proposal to bring to the state legislature that would implement a waiver system in Tennessee. Helping families like the Kauffmanns do everything they can to give their child the medical attention she needs.
To get involved, contact the Family Voices of Tennessee or the Disability Coalition of Tennessee. You can also post your stories on social media using the hashtag #mykidtoo.
Adam and Rondi Kauffmann will be appearing on the Power Lunch on Friday, October 12 at 11:30 to tell their story.