Declan was one-and-a-half years old when he was diagnosed with Autism. His parents had started noticing a difference with him earlier on when he didn't seem to behave like other babies his age. He was a content baby, but not as attached to his parents as most socially typical babies were. "Once we got the diagnosis, we were devastated, but it allowed us to move forward to find him the therapy he needed," his parents said.
When they sought treatment for him, Declan's parents were shocked and discouraged to find that many insurance providers do not cover therapies and rehab for children with autism. They looked at several different plans and found that some insurers even explicitly excluded autism treatments in their benefit manuals. While they were able to receive an evaluation quickly through a study at the University of Washington, they were randomized to the control group that was not going to get the treatment at the UW. A child psychologist on their insurance plan advised that while ABA is a treatment option, and probably what he would pursue if this was his child, he said this type of type of therapy was unlikely to be covered by their plan.
Despite knowing that their plan would likely not cover his therapies, Declan’s parents did request the referral for ABA be submitted, hoping to win an appeal. Their request for ABA therapy was denied immediately and when they tried to appeal, they were told his treatment would not be covered, as it was considered educational and not medically necessary. They appealed again, citing additional supportive articles but were denied again. They were also told their insurer was not obligated to provide any habilitation past Declan’s level of functioning prior to his decline, indicating they did not need to provide therapy to bring him beyond his developmental age of eighteen months!
Declan’s family pursued ABA therapy and ended up recruiting and hiring their own therapy assistants. They had to pay out-of-pocket for many of the services that were not covered by insurance. “Though it was a bit of a stretch financially, we consider ourselves fortunate that we able to afford this care. We’ve met families that have had to forgo recommended therapies due to the expense and who didn’t feel that they could bear the strain of insurance appeals and months of waiting.”
The period just after Declan’s diagnosis was a very difficult time for them. It was unclear to them exactly what they needed to do. They also had many questions about Declan’s future – would he be able to speak, would he be able to go to school, to make friends. During this time, Washington Autism Alliance helped Declan’s parents through appeals’ resources, support, and the encouragement they needed to keep advocating for Declan’s right to treatment of autism.
Through WAAA’s insurance reform outreach, they learned about a class action against their insurer and they agreed to list Declan as the lead plaintiff in the lawsuit D.M. v. Group Health. This suit, now settled, has fundamentally changed the way Group Health now covers medically necessary treatments for all its members diagnosed with autism spectrum disorders statewide. “We couldn’t be happier with the outcome.
Declan’s parents feel much more comfortable about his future since starting his ABA therapy program, to which he is responding very well. They are extremely pleased with the progress he has made, “He’s a verbal, sociable, gregarious boy who is a joy to be around. This year Declan had a great birthday and for the first time had friends from school come to his party. He’s even trying new foods, like yummy spinach!”
They are very grateful for all that WAAA has done for their family and for the state of Washington by bringing awareness and advocating for all those who are unable to advocate for themselves. “They are really improving outcomes and futures for our children.”