Seth and Melanie Fowler’s days are fraught with the struggles of raising a child with autism. They spent a year cleaning feces off the walls and carpets of their son’s room daily before they learned behavioral techniques that—gradually—taught him to stop.
They scratched and clawed their way through bureaucracy to obtain the early childhood intervention that Melanie, who has a master’s degree in special education, knew their son, William, desperately needed. They uneasily eyed the divorce statistics for parents of children with special needs, which are unquestionably higher than those of typical families, according to Dr. Laura Marshak, author of Married with Special-Needs Children (co-authored with Fran Prezant).
Just preparing for and finally accepting the terrible diagnosis was a long and painful step. But they kept trudging, identifying programs that would help, including speech and occupational therapies and applied behavioral analysis, and enrolling William, now 5, in them.
Then, they hit a frustrating brick wall that had nothing to do with sleepless nights and days spent raising their second child as well as coping with William’s disorder: the battle to have their insurance pay for their son’s treatment.
“It was so physically and emotionally draining that everyone told me to give up,” says Melanie, a slight blonde woman whose easy smile belies her intensity and determination. Even family members and her husband urged her to let it go, considering everything the family already had on its plate. Not only did she keep going, but the Fowlers eventually sued, and in an out-of-court settlement, got the coverage William needed. An entire chapter of their self-published book, Look at My Eyes, due out this May, is devoted to helping other parents avoid the pitfalls that threatened to delay William’s care over the course of 18 months. “I can count maybe on one hand the number of parents who actually have coverage of the therapies their children need,” Melanie says of her wide experience with other parents of children with autism-related disorders.
A particular hitch, in their case, was their company’s refusal to cover applied behavioral analysis. ABA uses scientifically proven interventions, and hundreds of studies have shown that it is the most effective method for teaching children with autism.
First the insurance company said they’d never heard of ABA. Next, they said they didn’t have any in-network providers. Melanie was required to get a doctor’s note saying ABA should be considered a necessity just as speech therapy was. Then, in order to approve the in-network waiver, they required that the therapist be board-certified. Once the company agreed they covered ABA, then came stipulations like a $5,000 cap—enough to cover about one month’s worth of therapy.
The obstacles kept piling up and the daily telephone conversations were made even more frustrating by the fact that the Fowlers never were able to speak to the same person twice—so they had to repeat the whole story, from the very beginning, over and over. And then there was William. “When I’d be on the phone he’d be screaming and freaking out,” Melanie says.
She writes in this excerpt from Look at My Eyes:
“It was beyond frustrating, and going through that process affected me in ways which I can't even describe. But I somehow managed to stick with it, and every time I spoke to a different representative, I wrote it down. Sometimes they were not polite; this kept me going though, and helped to build a case—a good one. I can remember a specific incident when I called and spoke to a young man with no compassion or desire to help me in any way. I had just cleaned and fumigated William's entire room due to another episode of potty training ‘noncompliance,’ and I was tired. It was only nine a.m., and I already felt defeated. I called the insurance company, knowing I would have to repeat my story, and I was dreading it, but I wanted ABA therapy for William and needed coverage. After finally going through my spiel and realizing that I was getting nowhere, again, and that the representative was being rude, I began to lose it. I started crying and William was in the background screaming and spinning. I could barely hear the representative but I didn't care. I had no secrets. I finally said, ‘Well, I might just need to get a lawyer involved then.’ And he said, ‘Ma’am, I wouldn't bother with that, it won't do you any good.’
And in that moment, I knew I could win.”
The cost of caring for someone with an autism disorder is staggering. A 2006 study by the Harvard School of Public Health estimates it at $3.2 million over the person’s lifetime. With cases growing continually—the Centers for Disease Control estimates that as many as one child in 80 is diagnosed with an autism spectrum disorder—the need is dire for clear legal direction on insurance coverage.
With the Texas Autism Insurance Act of 2007, Texas become one of about 23 states that have legislation requiring insurers to provide coverage for autism spectrum disorder.
The law requires “a health benefit plan to provide coverage for all generally recognized services prescribed in relation to autism spectrum disorder by the enrollee's primary care physician in the treatment plan recommended by the physician.” The services include applied behavioral analysis; speech, occupational and physical therapy; nutritional supplements and medications; “and other treatments.”
Coverage is required from date of diagnosis until the child is 9. While this is a vast improvement (for one, the cutoff used to be 3), it doesn’t cover all the loopholes, notes Dr. Richard Garnett, executive director of the Arc of Greater Tarrant County, who has a 29-year-old son with autism and intellectual disabilities. Arc is a nonprofit organization that advocates for people with developmental disabilities and provides community outreach.
“When you examine the different types of insurance policies, you have to look at the exceptions and the criteria they can offer, ” Garnett says. “Maybe it covers autism spectrum disorders, but it can’t be A, B and C. A lot of families are finding they really struggle to find other diagnoses that are more acceptable, some kind of kissing cousins. But the diagnostic complexities are way beyond the mortal man.”
Complicating matters, in two years a new diagnostic and statistical manual comes out, and the autism-related Asperger’s syndrome won’t be in it, as such. “It’s going to be kind of low, medium and high autism,” Garnett says. “When you drop a diagnosis, everything starts all over again.”
And for families on Medicaid, cuts or changes in the federal program affect coverage as well.
The keys to dealing with the complex, ever-changing situation are tenacity and taking the time to learn about the world of insurance, says Melanie. In her book, she remembers how the insurance representative’s scorn at her mention of a lawyer spurred her on:
“As a child, I never liked anyone telling me what I was or wasn't capable of doing. I looked down at William in that moment and thought, ‘I am not giving up on him and therefore won't give up on this!’ For me, that was all it took. For someone on the other end of the line to act as if he had the right to dictate my son's future—never! That day, I was not defeated. That day was the beginning of triumph and perseverance.
As with many things, one of your best tools is knowledge.”
Her book lists facts to know about your insurance plan: the in-network and out-of-network co-pays; percentage of reimbursement for each; in- and out-of-network deductibles; out-of-pocket limit; lifetime cap; yearly limit; is pre-authorization or pre-determination needed for out-of-network providers? What is the submittal process?
While it may sound like another language, the Fowlers are proof that finding time to learn it is crucial for a child diagnosed with autism spectrum disorder—because early childhood intervention is so effective, every minute counts. Says Garnett, “It's been known now for a good 10 years that if you take a kid when they're 2 or 3 and you sink the farm [provide every therapy possible] by the age of 8 more than half the kids don't need services again.”
Look at My Eyes also provides very specific tips on how to get help with coverage, using the Fowler’s journey to clear the way so that others don’t face so many setbacks.
Some of those include:
- If you don’t have ABA coverage under major medical benefits, some companies will pay for ABA under mental health benefits.
- Once you get ABA coverage, be prepared with the paperwork to be reimbursed for the claim—that can include a claim form, tax ID number for the place that provided the treatment and a letter from your developmental pediatrician providing the proper code, which currently is 299.00.
- Never send originals.
For the Fowlers, publication of their book marks an exciting time of getting to share their hard-won experience with people who really need it—families with children who have autism spectrum disorder.
The insurance chapter alone could be required reading, and like the rest of the slim volume, it’s a quick read and remarkably easy to understand. That’s all by design. “It’s really realistic, really raw,” says Melanie. Other chapters include “Grief, Support, and the Big Picture,” “Setting the Bar High,” “The Nitty Gritty: Hands-On Strategies and Helpful Hints” and “In-Home Activities.” And then there’s “Look at My Eyes,” the chapter for which the book was named. One parent of a child with autism spectrum disorder wrote the Fowlers that just the title of the book brought tears to her eyes—they’re the words parents continually use to get an autistic child to listen, to focus, to reach to the outside world.
Seth, who found few fathers around the autism support community at first, adds his thoughts throughout in segments called “Seth Speaks.”
“It’s a short book,” says Melanie, but, continues Seth, “It packs a punch.”
Look at My Eyes will be available for $12.95 at amazon.com and barnesandnoble.com as well as their website lookatmyeyes.com.