There are certain events in your life that remain with you forever. The day you get married, the birth of your children, the deaths of your parents and siblings and the day your child is diagnosed with autism. For me, that day was August 11, 2007 at 3:15 p.m.
It is a day, a time and a memory that will be with me until I die. “Your son has severe autism syndrome present. I’m sorry. Here are some handouts that may help. Good luck." These are the words the diagnosing physician uttered about my son, Zachary. He had turned two a week earlier.
Little did I know that that moment would lead to me suing DoD and Tricare and winning … sort of.
I quickly learned that Applied Behavior Analysis (ABA) was the gold standard of autism therapies. Physicians, psychiatrists, psychologists, autism researchers and mental health professionals regard ABA therapy to be the most effective treatment for autism. Indeed, it is widely regarded as the only effective treatment for autism.
Initially, it typically requires at least 1 to 4 years of year-round treatment 25 to 40 hours a week. After this initial burst of concentrated treatment, the child make substantial progress in the great majority of cases, and treatment intensity is slowly reduced over a period of years.
I immediately enrolled Zachary at an ABA therapy center, where I expected Tricare, which continues to cover us even after my husband’s retirement, to cover the 40 hours of therapy each week recommended by my son's developmental pediatrician.
If my son was ever to lead a normal life he would need the intervention of this medically necessary therapy.
And so I was shocked when, only one month after he started treatment, I received a letter from Tricare refusing to pay. I appealed, appealed and appealed. I was denied, denied and denied. Tricare, we were told, covers no therapy – medically necessary or otherwise – for retirees.
Tricare insisted that the most – and almost always only – effective autism treatment was not a covered benefit. In one phone conversation, a Tricare representative hissed: “If you don’t like the way the legislation is written, then contact your Congressman.”
Which I did.
I appealed to my congressman who took up my cause. He, too, was rebuffed. I appealed to the number two in charge of Tricare, Gen. Elder Granger, and was rejected again.
Finally I appealed to the Secretary of Defense. Like everyone else in the Tricare bureaucracy, a curt rejection, with little or no explanation, was his response. I felt defeated.
And that’s when we headed to court.
With lawyer Dave Honigman and his team at our side, I learned that there were more than 22,000 military families with an autistic child confronting the same Tricare refusal to pay for ABA therapy just like mine. So Dave filed a class action lawsuit in federal court in Washington, D.C. on behalf of military families to compel the DoD to pay for the therapy.
Two years passed before we received both victory and, as it turned out, defeat at the same time.
Dave argued that the DoD was violating its legal (and moral) duty to pay for medically and psychologically necessary health care for the children of active duty and retiree families, simply to cut spending on health care and transfer those dollars to other DoD projects. Military families simply can't compete with the highly-paid, high-powered special interests lobbying DoD to throw money their way, even at the expense of military families who sacrifice and risk everything for their country.
Judge Reggie Walton sided with us. Calling Tricare’s refusal to pay for ABA “arbitrary and capricious,” he ordered them to pay for ABA therapy for the children of active duty and retired military families – however much was medically necessary.
But despite our win, Tricare has managed to put policies into place not just effectively getting around the order, but also possibly yanking care from previously covered Active Duty families.
Just one month after the court decision, they have proclaimed that sure, they’ll cover ABA therapy, but only if it is administered directly by a Board Certified Behavioral Analyst. They will not pay, they say, for therapy delivered by ABA tutors, therapists or other paraprofessionals – something they regularly covered for active duty children before the July court order and the way that ABA is virtually always administered.
That’s like saying they’ll only cover the work of an actual doctor – not care given by nurse practitioners or any other trained and qualified medical professional under a doctor’s supervision.
It makes no sense.
This is a political issue. President Obama routinely uses health care as a political pawn, claiming that a Republican administration would leave autistic and Downs Syndrome kids, who also use ABA, to fend for themselves without health care coverage. And yet his administration is who has repeatedly and shamelessly fought to block military children from receiving care.
We are the little people fighting the government machine to give our children the care they need and the coverage military families have earned and continue to earn through service.
Tricare’s message was always that fighting us is futile -- military families financially and emotionally stretched to the max, courageously sacrificing for their country and their child with a disability, don't have the financial and emotional resources to hire lawyers and withstand the challenges of a multi-year court battle to beat us.
But we do. Our children have no voice, so we must be their voice. Parents, politicians, people in authority and leadership must stand firm and fight the battle so that our children receive services they desperately need. It is absolutely shameful how Tricare continues to stall to avoid paying for ABA therapy for the military community.
Please help me spread the word about what is happening so we can move forward, and make changes for our children and not against them. They deserve the same opportunity to pursue life, liberty and happiness that all of us have enjoyed.
If you have questions about how this ongoing war for our children's future affects your family, or information that may help us, please e-mail Dave Honigman, lead counsel for the class of military families, at firstname.lastname@example.org, or phone him at 248-457-9200.
Dawn Berge is the of wife Ret. MSGT Ken Berge and mom to Carson and Zachary.