Autism Speaks | Kentucky Families Complain of Delays, Denials Despite Law | April 22, 2013 #AutisticHistory #BanABA


[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

Kentucky Families Complain of Delays, Denials Despite Law

April 22, 2013

LEXINGTON (April 22, 2013) — Nearly a year after the Kentucky Department of Insurance issued new rules designed to speed up claims for autism services, the delays and denials continue, according to reports by the Associated Press and the Lexington Herald-Leader. The experience follows a pattern in other states that have enacted autism insurance reform, such as California and Missouri, the AP noted.

“I don’t see any basis for why this should be happening two years down the road,” Daniel Unumb, executive director of the Autism Speaks Legal Resource Center, told the AP, referring to Kentucky’s 2010 law. “I think they’re still looking for a way to avoid the broad policy and the mandate.”

Parents of children with autism fighting for insurance payments in Ky.

By Beth Musgrave –

APRIL 20, 2013 6:23 PM

FRANKFORT — Tyler Hall’s autistic 2-year-old son could speak only a few words in January 2012 when he entered the Highlands Center for Autism in Prestonsburg.

More than a year later, the 3-year-old has learned dozens of new words and can dress and feed himself. His parents also can do something new: “We can go out to eat,” Tyler Hall said. “None of this would have been possible without the center.”

But the Halls and a dozen other parents of children attending the Highlands Center are struggling to get their health insurance companies to pay for treatment of their children three years after a state law was passed that requires large insurance plans to pay for autism-related treatments. 

“The amount of effort used to try to get around what they are supposed to do is mind-boggling,” said Hall, who moved from Lexington to Prestonsburg so his son — and now his nearly 2-year-old daughter — can attend the Highlands Center. “It’s an injustice to these families and to the center.”

When the General Assembly passed House Bill 159 in April 2010, Kentucky became one of 17 states that mandate insurance coverage for treatment of autism, a spectrum disorder that is characterized by impaired social interaction and communication skills. 

The bill, which took effect in January 2011, required large group insurance plans to pay for autism-related therapy — up to $50,000 a year for children ages 1 to 6 and up to $12,000 a year for kids ages 7 to 12. In particular, it required coverage for a costly therapy called applied behavioral analysis — an intensive one-on-one therapy that uses behavioral techniques to teach children skills. 

“It made everyone feel really great,” said Shelli Deskins, director of the Highlands Center. “The legislators, the providers, families and everyone involved thought this would finally help kids with autism. But there are still families that are trying to get reimbursed for something that this law entitles them to.” 

In particular, insurance companies have balked at paying for services in an institutional setting such as the Highlands Center and the Academy at St. Andrews, a private school for autistic children in Louisville. Generally, insurance companies are not required to pay for treatment that is viewed as educational rather than medical.

“It’s a loophole in the law,” said Dr. Mark Miller, whose autistic daughter attends St. Andrews.

The school does not bill insurance for treatment, but Miller and his wife — who also is a doctor — tried to submit claims to Anthem Blue Cross and Blue Shield and United Healthcare for their daughter’s treatment at St. Andrews. 

Those claims were repeatedly denied because St. Andrews is a school, Miller said. 

“It was unbelievable,” he said. “I’m a doctor. I know how to fill out an insurance claim. I know how to get the codes to bill for services. But there were so many hurdles. They put up such a wall of requirements. It has to be this type of therapist, and it has to be at this type of facility, and it has to be communicated with us in this type of way.” 

Parents shouldn’t have to jump through so many hoops and submit multiple documents multiple times, he said. 

“It’s a mandate,” Miller said. “The law says that they are entitled.”

Kentucky’s largest insurance companies — Anthem, United Healthcare and Humana — deny that they have intentionally blocked coverage mandated under HB 159. It took time to establish a system for processing autism treatment claims, particularly those for applied behavioral analysis, the insurance companies said.

The Autism Community Is Not The Autistic Community

* The “autism community” is not the Autistic Community. The autism community was created by non-Autistic led organizations and includes mostly parents, professionals and their friends. Most of what the world knows about autism is sourced from the non-Autistic “autism community.”


Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.

Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.

[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

Fact: Vaccines Do Not Cause Autism.

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