Call it a mother’s intuition, but there was something about his cry. It just made her go, “Huh.”
From the moment Jennifer Rowley took her newborn son Alex home from the hospital, she knew something was different about him. He hit all his milestones: crawling, sitting, walking. But between
9 and 15 months old, Alex wasn’t smiling or making eye contact like his older sister Amelia.
Once, he fell down the stairs and didn’t shed a tear. When something should have been too hot or too cold, he didn’t pull away. Soon, his energy became relentless. He sprang up every morning at 5:30 a.m.
Right after Alex turned 2, Rowley had her second son, Andy, a smiling baby who locked eyes and met his developmental markers. Then, he hit 15 months old, and his speech plateaued.
Though Rowley felt serious concerns about both her sons within a few months of their first birthdays, neither of them were diagnosed with autism spectrum disorder (ASD) until much later. Andy was diagnosed at 2 years and 7 months. Alex, 4 years, 8 months.
Research shows intervening with behavioral therapy early in a child’s development is critical for improving quality of life and addressing symptoms of ASD, which causes a range of social, communication and behavioral challenges.
Typically, the earlier the intervention — while the brain is changing at a rapid pace — the better the outcome. It can have a vast effect not only on the family and the child’s well-being, but also on the child’s trajectory into school and the workforce.
But for Rowley and hundreds of other parents, having kids with autism has meant traversing a tangled, difficult-to-navigate world of waitlists, insurance snafus and confusion that leads to delay after delay.
The system of autism services in Washington state, while improving, hasn’t kept up with the rising identification of autism and ever-changing insurance regulations. A web of factors come together to work against early intervention, from a lack of providers to problematic licensing practices.
“The state has been moving to set up the infrastructure,” said Arzu Forough, president of Washington Autism Alliance. “And from my vantage point, there has been great improvement in building one where there was none. But the level of infrastructure is really not appropriate to meet the need.”
Families can wait years for the services they seek, even though kids can be diagnosed as young as 2, and many say it disproportionately impacts low-income families.
“It’s very sad, actually,” Rowley said. “I talk to so many people who don’t know what to do.”
In recent years, there have been dramatic changes in the landscape of autism.
According to the Centers for Disease Control and Prevention, autism identification has jumped from one in 150 to one in 68 children since 2002.
At the same time, more insurance companies are now required to cover applied behavioral analysis (ABA), a widely recognized treatment for autism that can lead to better communication, relationships and learning.
In 2012, the Washington State Healthcare Authority (HCA) settled a lawsuit and agreed to cover ABA for all kids on Apple Health (Medicaid) who were diagnosed with asd. It marked a turning point for access to treatment for low-income families.
Most insurance companies require a diagnosis before they will cover specialized therapies such as aba.
For kids on Medicaid, that diagnosis must come from a center of excellence (COE).
There are currently nine COEs in King County. Seattle Children’s Autism Center is one of the largest, pulling in about 4,000 patients in 2014. Historically, the waitlist for an initial diagnostic autism screening at Children’s has been a year.
That was certainly the case for Rowley as she struggled to get diagnoses for both her sons.
Delays started when a pediatrician in California told Rowley she was overreacting; Alex was just being a boy. After moving to Seattle, a friend suggested she call Children’s. She waited six months for them to tell her she could finally schedule an appointment — five months out.
“I was livid,” she said.
Meanwhile, she and her husband looked into paying a psychiatrist for a private diagnosis. Rowley said she was told it would cost about $3,000.
“Oh my gosh, it was so frustrating,” Rowley said. “There were lots of times where I felt like, I hate to say this, but rich people can get diagnosed.”
Alex was finally seen at Children’s, but diagnosing autism is a long process spanning multiple appointments and multiple specialists. Hoping for answers, Rowley fumed when they told her to make another appointment in another five months.
Andy started to exhibit concerning behavior while Alex was still on the list. By then, Rowley knew the drill and couldn’t stomach the idea of putting Andy at the bottom of another year-long wait.
It was only when she caught wind of a Children’s research study, which included a diagnostic screening, that Rowley found relief. She signed Alex and Andy up, and within weeks, they were both diagnosed with ASD. Rowley called it their “golden ticket.”
But many families remain on the list, which has since dropped to a six-month wait. For Clinical Director Raphael Bernier, that’s not enough.
“To all of us, the length of time families must wait is abhorrent,” he said. “It tortures all of us who work around the clock to try to make this happen faster.”
Hurry up and wait … and wait
If and when parents get a diagnosis, more daunting waitlists are right around the corner.
An email survey of Washington aba providers who accept Medicaid revealed a range of wait times for treatment. One clinic had 40 kids and a wait of two years. Another: 22 families, six months.
One small provider had more than 200 families on its waitlist, with nearly all of those on Medicaid and some waiting more than a year. Another had 408 kids on a waitlist of six months to two years, depending on several factors.
The amount of time a family is on a waitlist for ABA is not defined by first-come, first-served. It depends on questions such as: Can the child be seen during the day, or does it have to be after school? What type of service is needed? How does the child interact or fit in with current behavioral therapy groups?
And because autism often requires years of intervention, waitlist turnover can be utterly static.
Paul Johnson, director of Foundations for Learning and Behavior, Inc., said families typically only leave his clinic when they move, switch providers or change insurance. He’s had some clients for five years.
“I can’t even hazard a guess as to our wait time,” he said in an email. “But there are some children on our waitlist [who] will be adults before they would get called. This situation is tragic.”
There are many therapies besides ABA used to address symptoms of autism, depending on the child’s need. Back when Rowley was waiting for a diagnosis, she and her husband chose to pay out-of-pocket for speech and occupational therapy for Alex. Those had waitlists, too.
Best insurance wins
For many providers, insurance is a determining factor for placement on a waitlist.
Providers, especially small ones, have to balance budgets by accepting families with insurance companies that reimburse at high enough rates and cover the services they offer.
For Rowley, who has private insurance through her husband’s employer, finding providers who take her insurance has been difficult. She recalled waiting months for speech therapy and finally getting in — only to discover they no longer accepted her insurance.
“It’s like we always have to start over again,” she said.
And when it comes to Medicaid, several providers reported that they offer limited slots due to lengthy paperwork and low reimbursement rates.
One provider, who wanted to remain anonymous, said she can only afford to take on one Medicaid-covered family at a time in her 16-family caseload. She said the reimbursement rate doesn’t add up to what she believes she has to pay to attract quality, experienced staff.
“Otherwise, I barely break even,” she said. “And sometimes I don’t.”
She said she has 13 Medicaid families on her waitlist, but she expects to have her current family for several years and won’t likely be able to accept more. Her waitlist for other insurance types has two families, who she said will likely be seen within the year.
Gail Kreiger, manager of HCA’s Health Care Benefits and Utilization Management Office, said there are 350 kids on Medicaid currently receiving aba.
Another 1,500 ABA-approved families are still awaiting services.
In Washington, a total of 34 ABA providers accept Medicaid.
Kreiger and Lin Payton of the HCA said they have been working aggressively to expand that list since the settlement two years ago, with some success. They have added five since the beginning of the year.
“This is really important to us,” Kreiger said. “And I say that with all honesty in my heart. We have done everything that is within our power to recruit providers within the rules we have to work with.”
But it can be hard to attract providers when other insurance companies pay more and regulate less.
There’s another obstacle: Medicaid can only contract with providers who are licensed, but there is currently no license offered by Washington state for behavioral analysts or their therapy assistants.
That means providers who are not licensed by the doh as an independent practitioner — physician, psychologist or mental health professional — have to endure the process of licensing their agency as a “Community Mental Health Clinic,” a workaround established by the HCA.
A provider who went through the process called it “time-consuming and rigorous,” and Kreiger said it requires initial fees and annual renewal fees. There is currently a bill in the state legislature, sb 5488, that would add the ABA license.
Nardella of the DOH said she believes the bill would help encourage people to take up aba as a career and practice in Washington.
For now, waitlists for families on Medicaid are longer at several clinics, while those who can pay out-of-pocket or have better insurance coverage have more provider options. Families are often encouraged to get on as many waitlists as possible.
“It’s an alarming trend for children not to get equitable access to services,” Forough said. “This is not the same experience for affluent families or those with private insurance. It’s the disparity that bothers us.”
Hope on the horizon
Everyone seems to agree on one, imminent need: more providers.
“There are not enough behavioral analysts in the country to manage all the kids and all the [insurance companies] coming forth,” Kreiger said. “It’s just very much in demand, and it’s a profession we have to promote.”
As the HCA continues to build its list of COEs and Medicaid-accepting ABA providers, clinic directors imagine a future where they can get clients in for a screening within weeks, seamlessly moving them from diagnosis to treatment.
At Children’s, which has been lauded as an autism clinic that accepts almost anyone who walks through its doors, Bernier has tried to work internally to shorten the wait, including compressing the screening process into fewer appointments.
He envisions systemic overhauls: medical advancements that would make the diagnostic process efficient and fast or even treatment models that don’t rely on a diagnosis to start behavioral therapy, although he acknowledged that that clashes with current insurance practices (“No need to wait” RC, Feb. 25).
Meanwhile, clinics have taken steps toward better communication with the families on their waitlists.
The University of Washington Autism Center recently added a waitlist-tracking system and will begin calling families on the list once a month to check in and problem-solve. Other clinics have offered group trainings where families can learn basic, at-home interventions.
For kids under 3, a federally mandated program called Birth to Three offers developmental services, though not the intensive ABA. Rowley was lucky enough to stumble across Birth to Three during a Google search and promptly enrolled Andy. Alex was too old.
And with most courts ruling against insurance companies that don’t cover ABA, the legal groundwork is shaping up.
“I know it’s gotten better,” said Nardella of the DOH. “Because we know how bad it was. It takes time to move these systems forward. It’s taken new laws, lawsuits, settlements. And yeah, we’re brutally aware of how much still needs to be done.”
For Rowley, there’s always another challenge looming. Her insurance has repeatedly denied coverage for treatment based on technicalities.
Getting Alex’s speech therapy covered was a nine-month process, she said.
For the time being, Alex is receiving some treatment through school, and Andy even gets some group ABA through a school program. But Alex needs much more than what he’s getting, and Andy’s program ends next year.
Rowley and her husband have been working tirelessly to ensure they have the ABA coverage they need — by the time they need it — through appeals and endless phone conversations, even reaching out to advocacy groups.
At one point, they considered scoping for jobs with different insurance.
“We were trying to be realistic about it, because at the end of the day, we know we are going to need this coverage,” she said. “We lose sleep over that sometimes.”
Rowley said if Andy were to lose the ABA he receives through school today, they’d drop everything to get him what he needs.
“We’d change our lives 100 percent,” she said. “In an instant. I have to have that for him.”
Today, Alex is on two waitlists for ABA, and separate waiting lists for a social skills group, a behavior therapist and for cognitive therapy. Andy is on a years-long waitlist for feeding therapy and a waitlist for occupational therapy.
While recounting endless stories about trying to get services for her sons, Rowley often has to laugh.
“It’s the nature of the beast, this autism thing.”