Lawmakers look into TennCare’s disability support program

NASHVILLE –When state lawmakers return to Nashville in January to convene the 111th General Assembly, one issue they may focus on is a program that could address the financial burden faced by families caring for children with severe developmental disabilities.

State Sen. Kerry Roberts, R-Springfield, said last week he is looking at a potential legislative fix after reading a story published by the Tennessean about 1year-old Adelaide Kauffmann, who was born with debilitating muscular atrophy.

“I was very touched by the article and made a commitment at that point to investigate this issue and to see if we can put forth some legislation that makes sense for Tennessee,” Roberts said Thursday.

Tennessee is one of the few states in the country that has not adopted a Medicaid pathway that meets the needs of young children with significant disabilities living at home.

There is a federal provision — started by President Ronald Reagan in 1982 and named after Katie Beckett, who spent the early years of her life living in a hospital — that aims to provide families more financial security while they take care of their loves ones at home.

It’s a program that Frazer Gieselmann, a father from Memphis, would like to see expanded in Tennessee.

Two of his three daughters were born with Batten disease, a neurodegenerative illness where brain cells die because they can’t remove waste.

His middle daughter, Milla, died from Batten in 2016 at the age of 6.

His youngest daughter, Elle, is sick and requires 24-hour care. She’s 6 years old now and still in diapers. She can’t walk. She can crawl a little. She can hold herself up some. Her seizures come suddenly, dropping her instantly to the ground.

She needs home nursing help so her parents can sleep at night and specialized equipment like a bath assistance chair and wheelchair stroller so her family can transport her.

The Gieselmann family has received TennCare to help with these needs for the past two years, but Frazer Gieselmann has just been notified that his income is above the allowed level and the family’s case is under examination.

Without TennCare, the family faces more than $150,000 in private medical aid bills and more than $30,000 in medical equipment bills for items it needs just to function as caregivers for Elle, her father said.

“It would be, I think, fantastic for the state to have something in place for an exception to the rules,” Frazer Gieselmann said. “I get that there has to be a qualification level for any benefit provided by the government, but there also has to be a reason to examine needs on a case-by-case basis.

“If not the Katie Beckett program then something in place where, while you don’t meet all the requirements for Medicaid or TennCare, we acknowledge there are special needs above and beyond what we typically see.”

Joel Ebert and Jessica Bliss

Some middle- and high-income families left in limbo

There are few ways states can provide Medicaid coverage for children like Adelaide and Elle. One is through a state plan option. Another is through a Home and Community-Based Service waiver, which was authorized under Section 1915 (c) of the Social Security Act.

“Essentially what the Katie Beckett option and the comparable 1915 (c) waivers do is treat kids who are in the community the same as they would be treated if they were institutionalized in terms of finances,” said MaryBeth Musumeci, associate director at the Kaiser Family Foundation’s Program on Medicaid and the Uninsured.

That means that when deciding whether those children qualify for Medicaid coverage, the parents’ income is not taken into consideration.

Musumeci said some states opt to use HCBS waivers because it allows them to control costs by setting limits on the number of children who can enroll.

“If you do the state plan category, you have to cover everyone who is eligible,” she said. “If the state has concerns about budgetary management that would lead them to the waiver.”

Tennessee falls more in line with