9 Investigates: Children with autism being denied therapy, leaving families desperate

CHARLOTTE — Some local families are desperate to get therapy for their children living with autism and some have found it in a certain therapy.

“If you as a parent don’t have a voice for your own child, who else is going to?” one parent said.

“The whole thing makes me so mad,” a parent said.

Private insurance companies may require preapproval for certain treatments or procedures.

However, a nurse told Channel 9 anchor Allison Latos that Blue Cross Blue Shield of South Carolina, and the company that manages behavioral health claims, have such strict requirements that it’s nearly impossible for families to jump through the hoops.

Savannah Ordaz said that her eight-year-old daughter, Lilly, didn’t show much emotion as a baby.

Lilly was about six-months old and wasn’t trying to sit up, the mother said.

“She wouldn’t laugh at us,” Ordaz said.

Lilly was four years old when she was diagnosed with autism.

She is doing great now, Ordaz said.

Her mom credits a type of daily, intense therapy known as applied behavior analysis.

Carrie Hinnant, owner at Carolina Therapeutics, said ABA can help with several issues.

“ABA therapy can work on toileting,” she said. “It can work on dressing. It can work on tantrums.”

Her staff treats many kids with autism, including Lilly.

Hinnant said that many families spend years on a waitlist for ABA therapy, because there is a lack of providers.

Some families are struggling to get coverage approved by BCBS of South Carolina, and Companion Benefit Alternatives, which manages their behavioral claims.

“They had autism when they were five,” Hinnant said. “They’re going to have it when they are 15, but all of a sudden, their paperwork isn’t good enough. So now they’re required to go get new IQ testing and new (Autism Diagnostic Observation Schedule) testing.”

Hinnant said that BCBS of South Carolina requires those evaluations within six months, which is a deadline impossible for many families to meet.

Latos called to see how long getting an appointment could take.

Staff at the Medical University of South Carolina said that a child could wait six months to a year for autism testing.

There is an eight-monthlong backlog at Prisma Health Children’s Hospital in Columbia, officials said.

That upsets Hinnant.

“It boils down to money,” she said. “For example, if companion doesn’t have to pay for ABA therapy services and these kids get older and the parents continue to struggle, well, maybe they’ll eventually get Medicaid and then it is the state’s problem.”

Latos asked Hinnant if there are problems or challenges with other private insurance companies.

Hinnant said there are no issues elsewhere.

She encourages other parents who are facing a denial to appeal.

“Don’t stop fighting for that,” Hinnant said. “It’s the only thing you can do.”

Latos has been trying to get a response from BCBS of South Carolina and Companion since Jan. 19.

She has sent four emails and left three voicemails for a spokesperson, asking why new autism assessments are required and for a response addressing concerns from therapists and families.

No one has responded.

Hinnant took her concerns to the top of BCBS of South Carolina.

Hinnant and her attorney met with the deputy director, and after that meeting, she said the company removed the requirement for new IQ tests in December. But that has not budged on the six-month timeline for other psychological assessments.

Families who cannot get all the paperwork in time could get skipped while on the waitlist for therapy.

Their other options include switching insurance carriers or paying for therapy out of pocket.

(WATCH BELOW: Vance HS graduate with autism: ‘Keep trying hard’)