TennCare Targets Essential Services for Children Living with Autism

Cayden and Carter Bolding are like any other kids; they like to play, swim, and go on family outings. Without their 80 hours of nursing a week, though, these things become nearly impossible to accomplish for the Bolding family. With upcoming budget cuts, TennCare is targeting services for children with autism, like Cayden and Carter.

Cayden and Carter both have level 3 autism, meaning they require alternative ways of communicating and lifelong, substantial support. Losing these supports would be "all the way around unsafe," according to their mother, Elaina. She explains that life would become extremely dangerous, as the boys tend to hurt themselves, are prone to wandering off, and would be completely confined to their home.

Historically, each child received 40 hours per week of personal assistance, with an additional 40 hours shared between them. Earlier this year, however, TennCare moved to cut Cayden's individual hours, arguing that one Certified Nursing Assistant could manage both children simultaneously, effectively reducing support from 80 to 40 hours per week. This motion by TennCare came around the same time Cayden was in a wheelchair after a double leg surgery. This decision by TennCare, being made seemingly at random, could have proved detrimental to the Boldings, who have had consistent care support for over a decade.

It was easy for TennCare to overlook the invisible workload Elaina takes on. Even with 80 hours of support, managing two children with profound disabilities is difficult. Elaina is the primary caregiver for the boys, managing an hour-by-hour schedule, handling therapy "homework”, and advocating for her children and other children like hers. There was an instance when, overcome with exhaustion, Elaina fainted at an appointment for one of the boys.

She consistently puts her children before herself: "I want to read a book and spend time with my husband, but if someone is not standing and holding this up, it all collapses,” Elaina shared. Even as an experienced advocate for children with autism, navigating an appeal for home health services with TennCare proved to be a grueling process. At one point, TennCare suggested institutionalizing the boys at the nearest facility, which is 4 hours away in Atlanta.

TJC assisted the Bolding family with the appeal, providing extensive documentation and evidence that the boys' care needs are so significant and complex that a single caregiver cannot safely or effectively manage both at once. Fortunately, TJC was able to resolve the case before going to a hearing and ensure that nursing hours were reinstated and necessary in-home supports were made available. Cayden and Carter’s services were ultimately preserved, and the Boldings are ready to return to life as usual.

The Bolding family's story is a prime example of a broader trend of service denials for children with autism and the unequivocal disconnect between agencies, like TennCare, and these families.