Autism Awareness Month: AFGE Played a Major Role in Obtaining Coverage

It’s been two years since AFGE’s action and relentlessness helped federal employees with children on autism spectrum breathe a little easier. 

Back in 2016, the Office of Personnel Management (OPM), which oversees the Federal Employees Health Benefits Program (FEHBP), issued a new rule requiring all FEBHP carriers to provide coverage for Applied Behavior Analysis (ABA), the most effective treatment for autism, starting 2017.  

To celebrate the National Autism Awareness Month, we’re recounting how this important coverage came to be and how AFGE’s relentlessness made a big difference in countless lives.  

A Father's Wish 

If you had a child who was on the autism spectrum, and it cost between $45,000 to $70,000 a year to get the only treatment that has been proven effective to address his condition, what would you do? One AFGE member turned to his best ally: his union.  

In a letter to AFGE Public Policy Director Jacque Simon 12 years ago, he asked AFGE to try to get FEHBP to cover ABA, the most effective known treatment for Autism Spectrum Disorders. Obtaining this treatment would be his son's only shot at having a normal life.  

The cost of this treatment is more than any federal employee can afford by him or herself. After doing some research on both the therapy's effectiveness and whether other employers' health insurance plans covered it, Simon took on the fight. But she faced her first stumbling block right away.  

“The Bush administration said no,” Simon recalled the day she brought up the issue with OPM officials. “But we kept the issue alive. It was the first thing AFGE asked new OPM director John Berry when he took office in 2009.”  

AFGE told Berry that this issue was urgent, that OPM should reject insurance companies’ complaints about the impact of adding this benefit because FEHBP contracts are cost-reimbursement type contracts, that the insurance carriers should have no say in what benefits federal employees pay for or receive, and that each year more states had passed legislation requiring coverage. As the years went on, more and more research had proven the superiority of ABA among treatment for those on the autism spectrum. 

Berry was receptive, but no definitive action was immediately taken.  

We kept at it 

AFGE never considered giving up. We kept at it, and in 2013 we finally persuaded OPM to allow plans to cover ABA. This was a partial victory because we sought a requirement that all plans cover ABA, not a rule that merely permitted coverage. Some plans did provide coverage, but none of the nationwide plans did so, and there was not even one plan per state that provided coverage. Virginia, home to more than 170,000 federal employees, had no coverage at all, for example.  

“Earlier, their excuse was to claim that ABA was education, not health care,” Simon said. “That was always an obviously ridiculous excuse. They simply didn't want to pay for it.”  

After ten years of AFGE’s relentless lobbying, OPM finally relented in 2016 and issued a new rule requiring all FEBHP carriers to provide coverage for ABA.  

Twenty-nine states require the coverage in Obamacare "exchange" plans, and 43 states plus the District of Columbia require some coverage of treatment for Autism Spectrum Disorders. Now FEHBP, which covers more than eight million federal employees, retirees, and their dependents, is doing the right thing for these families. 

According to the Centers for Disease Control, one in every 68 children in America is on the spectrum. If that rate affects children of federal employees, tens of thousands of children who need ABA will have a shot at developing to their full potential and their parents will be spared financial ruin in addition to having to face the challenge of Autism Spectrum Disorder. AFGE members with children on spectrum are thrilled with the new coverage. 

Together we can 

AFGE is proud to have played a major role in getting FEHBP to cover this important treatment. 

We thank the AFGE member who wrote us the letter 12 years ago for inspiring us to take on the fight. We did not give up when they first told us no because giving up would mean failing tens of thousands of children who could benefit from ABA. Because we did not give in, we are proud to say today that together, we made a difference!  

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