Lack of autism coverage leaves parents upset

At first glance, the Office of Personnel Management’s decision to permit the Federal Employees Health Benefits Program (FEHBP) to cover a certain autism treatment next year seemed like an important step forward.

More than 30 states already mandate insurance coverage of Applied Behavior Analysis (ABA), so it appeared that Uncle Sam is finally catching up.

He is. But his step, while important, also doesn’t take him very far. It continues to leave him, autistic children and their federally employed parents behind the curve.

OPM, after excluding ABA from FEHBP as an educational service, will allow insurance companies to cover it as a medical treatment next year. Open season, during which employees can change insurance plans, ends Dec. 10.

“This decision by OPM, however, is only a partial victory, since they only allowed rather than required the insurance companies to cover autism treatment,” said J. David Cox, president of the American Federation of Government Employees, which has pushed for ABA coverage.

The problem for families is many insurance plans still will not cover ABA. OPM does not mandate it. As a result, coverage of ABA will be available in some places but not others. It will not be covered, for example, in the District, Maryland and Virginia, except in the Hampton Roads and Richmond areas, according to Autism Speaks, a science and advocacy organization.

“Out of 230 participating health plans, 67 chose to offer the ABA benefit in 2013,” according to the organization. ABA coverage will be available everywhere in only three states, Arkansas, Minnesota and New Mexico. It will be available in parts of 19 others. Everywhere else, parents and their children will be out of luck.

OPM Director John Berry said federal families “should know that all FEHB carriers currently cover speech, occupational and physical therapy, as well as mental health treatment and medications for children with autism. This decision on ABA coverage offers an opportunity for the provider base to grow and ABA coverage to expand.”

Until then, many employees will have to pay for coverage personally, as some have been doing

“The OPM decision that ABA should be covered as a medical therapy felt like a victory,” said Katy Scheflen, a Justice Department lawyer. “ The disability community was excited, I was excited — words like ‘landmark decision’ were tossed around in the media. I truly believed that come 2013, things would change and that for the first time in years, I would not spend countless hours thinking about how I was going to pay the therapy bills. I believed that I could stop worrying about asking family and family friends for financial help and wondering how much more I could pull out of my retirement account to get through another year of therapy for my daughter. It felt like this particular battle was over and we had won.

“Unfortunately, it turns out that there is a very big difference between telling insurance companies that they may stop discriminating against families struggling with autism and that they must stop discriminating against them. And make no mistake about it — it is discrimination,” she continued. “In retrospect, I guess I was naive to expect that, still given a choice by OPM, insurance companies would choose to do the right thing. At the end of the day, the OPM decision changed nothing for my family, other than to give us false hope. To say it is disappointing is an understatement — it is heartbreaking.”

Scheflen is not alone.

Krystal Wick, a Veterans Affairs employee in Milwaukee, said that to get the ABA treatment her 4-year-old son, Jaden, needs, “I had to go out and buy private insurance to get him therapy services, because I will not allow him to go without.”

She appreciates the opportunity “to work for your country and a place that has a very honorable mission” but added that she is also disappointed because “right now it feels like it is at the expense of my child’s future because of the lack of insurance that is provided.”

ABA therapy is designed to assist children with self-help skills, language and academic concepts, “virtually everything that impacts a child’s life,” said Pamela H. Gorski, a board certified behavior analyst and executive director of Reaching Potentials in Fredericksburg, where she has worked with Scheflen’s children, Aidan and Maggie Dougherty.

ABA is “the most highly regarded treatment” for children with autism, Gorski said. It is also expensive. A highly trained professional works with children one-on-one for 25 to 40 hours a week, she said.

My colleague Walter Pincus wrote about ABA for military families on Tuesday.

OPM sent Wick an e-mail that said the agency “does not mandate coverage as a matter of policy.”

“We do not mandate medical policy changes that direct insurance carriers to provide health insurance coverage for specific treatment regimens,” the e-mail said. “While we make every effort to provide a broad range of benefits under all of the health insurance plans offered under the FEHB Program, we cannot negotiate coverage for all of the services, or the level of services, that every enrollee would like to have and then require every FEHB plan to provide that level of coverage.”

That leaves Wick “upset and frustrated.”

“I feel that Federal Employee Health Care benefits are becoming substandard to those mandated as covered in my State for the private sector and State and local governments,” she said in an e-mail. “The least that OPM could do is provide at least one option for [the autism] coverage to every Federal employee in all geographical areas regardless of the employee paid premium price. I have been told, off the record, to ‘move to an area with better coverage’ on more than one occasion.

“That suggestion clearly implies that people do not understand the challenges of raising children with special needs.”

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