One of the original LittleStar families in 2002 recently fought Indiana Medicaid all the way to the Indiana Court of Appeals and won! Their victory is paving the way for other adults with autism to receive treatment that is too costly for most families to afford.

Tom Blessing and Victoria Blessing-Wade continue to advocate for their son, Connor, 24, who benefits from applied behavior analysis (ABA) therapy. Medicaid paid for Connor’s ABA therapy until his 21st birthday but denied payment after that based on his age. Connor had made significant strides with ABA therapy, and his family wished for him to continue.

Blessing, an education attorney, sued the Indiana Family and Social Services Administration on Conner’s behalf in Boone Circuit Court in July of 2020. The suit claimed Medicaid, under the direction of FSSA, arbitrarily denied Connor benefits for medically necessary treatment based on his disability.

FSSA previously deemed ABA therapy necessary for Connor until he turned 21 and then denied coverage of therapy solely based on his age. In her opinion in May, 2021, Boone Circuit Court Judge Lori Schein wrote “… The court concludes that the only individuals affected by the age restriction for ABA therapy are individuals with autism,” Schein wrote, adding, “Thus, the denial of Connor’s ABA therapy is a denial on the basis of his disability – autism.”

A denial based on disability violates the Americans with Disabilities Act (ADA) and federal Medicaid law, Schein ruled. “… The cost of ABA therapy is not a valid reason to impose an age restriction on coverage,” the appeals court decision reads. “Budgetary concerns … do not outweigh Medicaid recipients’ interests in access to medically necessary healthcare, leading the courts to conclude that the age restriction denies access to medically necessary services in violation of federal law.”

FSSA appealed the ruling but recently lost when the appeals court upheld the ruling about using age to determine benefits. While Medicaid can no longer deny Conner on the basis of his age, but they could deny ABA therapy to others based on age because the rule is still on the books.

“Just because the judge ruled it’s unlawful and discriminatory doesn’t mean it no longer exists,” Blessing said. “We’re just one step closer.”

Now the rule, part of Indiana Administrative Code, will have to be repealed or edited to remove the age restriction by the Indiana General Assembly, Blessing said.

“What families have to do,” until then, Blessing said, “is submit a claim and make Medicaid deny it on the basis of age before they can challenge it. … If they deny it on other grounds, medical necessity, for example, this decision doesn’t apply.

As LittleStar celebrates its 20th anniversary this year, this is a great reminder that while we have accomplished a lot, there is still work to do. LittleStar will continue to fight for every person with autism.