“I honestly didn't think the progress would be made in time for my children to benefit from it. But it has.”
It was not long after Eric’s 15-month checkup that Amanda and James Loaris began to notice that their son was showing signs of being a “late talker”—an early lack of speech development that is a common symptom of autism. After Eric’s second birthday, his pediatrician had some very difficult news for his family: it was looking increasingly likely that Eric was on the Autism spectrum; thus, the gap separating him from his peers would likely continue to widen. Not long after his visit with the pediatrician, Eric was referred to Seattle Children’s Hospital, where he was diagnosed with moderate to severe autism.
Though Samantha’s early development appeared to be normal, with her big brother’s experience in mind, her parents observed her closely for warning signs. Only two months after passing her one-year checkup with flying colors, Samantha began experiencing a very sudden regression. Though her 12-month checkup did not show anything out of the ordinary, only two months later her facial tone began to change, and she began to withdraw from many social situations. Samantha was soon also referred to birth to three.
The Loaris’ spared no effort to ensure that Eric and Samantha got the services they needed from the public schools, enrolling them in the extended day autism preschool. In addition, they had many qualified professionals carefully assess the two siblings, prescribing them extremely promising, evidence-based treatments. But one single, insurmountable obstacle stood in the way of receiving these therapies— despite the profound impact that these treatments could have on Eric and Samantha’s lives, neither insurance, nor Medicaid would cover them. Indeed, high the price tag of Autism treatments has put many them out of reach of many Washington families that are in desperate need of them— and with the price tag of severe autism treatments exceeding $25,000 a year, the Loaris’ were no exception. As Amanda puts it, “This felt awful. There was evidence based, proven effective treatment, that my children didn't have access to simply because we couldn't pay for it. In absence of timely treatment, even with school based intervention, they are both still significantly impacted.” Facing tight economic circumstances, they tried to make the best of a difficult situation by enrolling Samantha in a sibling study at the UW that was testing an experimental treatment that was showing promise—which, rapidly became their only hope. But when Samantha was assigned to the control group (the group not receiving any treatments whatsoever), her parents began to run out of options. Despite themselves, they began to wonder: What’s the point of early diagnosis, if life-changing treatments are out of reach?
“I started following WAAA’s efforts to get therapy covered by private insurance. I wanted to help make that happen in some way, willing to tell our story to legislatures and anyone who would listen.”
It was in the midst of facing this dilemma that Amanda became involved with WAAA. The WAAA vs. Washington State Health Care Authority (Medicaid) Settlement was a major breakthrough when it came to getting the Loaris family the help they needed. Thanks to the new Medicaid benefit that had been enacted as a direct result of the settlement, Samantha is now getting ABA therapy at home, fully covered by the new Medicaid benefit. These developments could not be more exciting to the Loaris family—in Amanda’s words, “At age 10 and 6, Eric and Samantha are receiving the therapy that they have always needed. We still wouldn't be able to cover it on our own, I am so grateful for their efforts to gain this coverage.”
On the recommendation of Arzu Forough, Amanda managed to secure additional support through the Developmental Disabilities Division at the Department of Social and Health Services, helping to arrange for intensive behavior therapy and speech services at home. Eric is currently being trained to communicate on an iPad, and has shown some solid progress in being able to use it to make simple requests. Meanwhile, Amanda and James have been going to counseling, which they say has been extremely helpful in working through the challenge of having two children with ASD.
In many ways, Samantha and Eric are not unlike their peers. The two siblings devour Disney movies and reading their favorite picture books. They also love splashing around in the local YMCA pool, having learned how to get in and out of the pool safely. Eric enjoys hiking, biking and trampolines, and has developed a love for slow country music, with a particular liking for Kenny G’s saxophone playing. Samantha, on the other hand, loves to work on puzzles. Having been granted access to treatments that had previously been denied to them, Samantha and Eric’s symptoms have showed signs of improvement.
Many challenges remain, however—especially when it comes to finding providers for ASD treatments and services that are available in rural areas. As Amanda points out, “Washington needs to have enough professionals to take on the caseloads of everyone now getting these benefits. And even now we are kind of limping along because we need to hire another behavior tech and finding and contracting them is very difficult.
“But,” she adds, “this is a great problem to have, since just a few months ago, the thought of evidence based treatment for Samantha was only a dream.”