Rose suspected that something was not right with her son Gabriel when he turned two years old, since he was still not talking. His doctors told her that it was typical for boys to speak later, so she shouldn’t worry. He was later diagnosed with autism when he was three years old.
She didn’t know where to start getting help. Some of the organizations she initially contacted had advice on the various types of therapy, but did not provide local resources. It was a challenge to determine which educational services Gabriel needed, what was available, and how to get them.
“The biggest challenge we had to face was coming to terms with his diagnosis and what that meant for him and our family,” she says. “I really didn’t process what the diagnosis meant. I held out hope (or was in denial) that he would ‘snap out of it’ or ‘breakthrough.’ Even while driving to the panel meeting for the diagnosis, I still thought they would say he was fine, talking just wasn’t his thing, or that he would be talking in no time. So when they confirmed that he had autism, it took me by surprise, even though I had months to prepare or brace myself.”
Initially, the family felt isolated and helpless. Local support groups were available, but finding time to attend them and coordinating the family’s schedules was quite difficult. Gabriel began having severe behavioral issues that were very difficult to manage. Rose had heard of Applied Behavioral Analysis (ABA) therapy, but Gabriel’s insurance did not provide any coverage. Prior to his diagnosis, she had been told that insurance would not cover any autism therapy whatsoever. “Thankfully, that policy was changed before his diagnosis, but we spent months worrying about how we would manage to pay for his therapy,” she says.
Rose and her family visited WAAA’s booth at Autism Day. They were attending to have an opportunity to speak to vendors and organizations that might help Gabriel obtain therapy. She spoke with Arzu Forough, WAAA’s CEO and founder, for a little while and took some contact information. When speech and occupational therapy coverage became an issue, Rose reached out to WAAA for help.
The services provided by WAAA most appreciated by Rose were having real people available and the ability to speak with a local resource on the phone. Ultimately, WAAA was successful in helping Gabriel obtain the help he needed.
Rose explains, “Gabriel absolutely NEEDS therapy and taking a break wasn’t an option. Disrupting his schedule causes a lot of regression and I didn’t want him to lose the skills that he had gained. I contacted WAAA along with a couple of other organizations to see where I might be able to get assistance. WAAA was the only organization that responded. Trish [Thrush, WAAA Health Law Advocate and Insurance Navigator] contacted me and helped me through the initial appeal process. When it became clear that this would require a second level appeal, Trish forwarded the information about our case to Mira [Posner, WAAA Staff Attorney]. Mira contacted me and walked me through filling out paperwork, sending letters, communicated with the insurance company’s attorneys, and advised me as to what steps we would take and the plan of action. Mira ultimately won our insurance appeal! She was successful in not only getting our insurance company to reverse its decision for Gabriel but to change its policy regarding therapy entirely. Now ALL families that have a family member with autism and First Choice insurance are eligible to receive unlimited therapy visits. Mira also helped us again several months later when the billing manager at one of the therapy facilities was having issues getting visits paid for by our insurance.”
As a result of Rose’s persistence, with the help of WAAA, not only did Gabriel obtain coverage, but First Choice Insurance changed its policy regarding people with autism receiving therapy. Anyone with First Choice coverage can receive unlimited therapy for autism with no calendar year maximum.
“I am finding that getting services for Gabriel is a constant challenge,” says Rose, “but it is nice to know that there is an organization that can provide resources to help advocate and help me to become a better advocate.”