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 ten years ago, he asked AFGE to try to get the Federal Employees Health Benefits Program (FEHBP) to cover Applied Behavioral Analysis, 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.
After ten years relentlessly lobbying the Office of Personnel Management (OPM), which oversees FEHBP, the agency finally relented last week and issued a new rule requiring all FEBHP carriers to provide coverage for Applied Behavior Analysis (ABA), the most effective treatment for autism, starting next year. 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.
It took a decade because it was not easy getting OPM to do the right thing.
“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.
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.”
We don’t know yet how many children on the autism spectrum will benefit from this new rule, but 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.
“Being a parent is hard. Being a parent with a child on the spectrum is even harder. We’re so proud that the union has been able to help these families breathe a little easier,” said AFGE President J. David Cox Sr. “With so many federal jobs that involve public safety and security, we want our members to have financial security and that includes comprehensive health insurance that covers any disorder or illness a federal employee's family member faces."
ABA is clinically proven to help increase skills and learning abilities in children with autism. 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 10 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!
If you have a child on the autism spectrum and would like to share your story and how this new coverage will help your family, please email us at [email protected].
ABA coverage is just one of the issues AFGE has been working on to help provide access to affordable and quality health care for federal employees. Visit www.afge.org and check out our new 2016 issue papers to see what else we’re working on.