Tony Burke was an energetic 2-year-old who loved drawing purple pictures of Barney and jumping on trampolines. But then his parents began to notice how he would grunt instead of talk, and couldn't look anyone in the eye. Before his third birthday, in 2005, he was diagnosed with autism.
"It felt like my heart had been ripped out," said his mother, Suzanne Burke of Philadelphia.
Seeking the best care, his parents found applied behavior analysis (ABA), a one-on-one therapy considered the most effective treatment to date for autism.
While doing ABA, Tony's grunts became words like "cookie" and "juice," which later evolved into sentences, such as "Can I have some juice?" The intensive therapy was working.
But then the family's insurance started denying claims.
Even though laws in both Pennsylvania and New Jersey require insurers to pay for ABA, Tony's therapy wasn't covered in school, where he most needed help. And it was impossible for the Burkes to pay the nearly $80,000 a year this therapy costs.
Without ABA, Tony's language skills plummeted. His behavior spiraled out of control. "You feel helpless," said Tony's father, John Burke.
While autism laws were enacted before 2010 in both states, families like the Burkes are still finding large gaps. Coverage for ABA, considered the gold standard of care for autism, can be hard to obtain. Payments can be delayed. And the laws do not even apply to autistic adults.
These problems will continue to fester, even as the developmental disorder grows more common. Though it's not clear why, autism's prevalence is about 120 percent higher than estimates from 2000, with 2010 data showing that it now affects one in 68 U.S. children.
In New Jersey, the prevalence is even higher, at one in 45 children. Estimates in 2008 put Pennsylvania's prevalence at one in 75 children. A 2005 census identified 5,510 individuals with autism in Southeastern Pennsylvania.
Autism inhibits social interaction and communication. It produces repetitive behaviors, such as hand-flapping. It is five times more common in boys than in girls.
Since the law was passed in New Jersey, "we've seen an ebbing, but we still see a lot of problems," said Princeton-based attorney Jodi Bouer, whose practice helps autistic patients use insurance. Autism New Jersey, an advocacy group in Robbinsville, has collected complaints from 25 families about mandated coverage, said the group's Elena Graziosi.
In Pennsylvania, the prevalence of complaints is harder to gauge because the law also compels Medicaid, insurance for the poor, to cover autism services. Providers who don't get paid by private insurers will often just bill Medicaid. This masks the full extent of coverage issues, said David Gates, director of policy for the Pennsylvania Health Law Project.
Philadelphia City Councilman Dennis O'Brien, a former state representative who was the primary sponsor of the state's autism bill, also thinks the law has fallen short.
"We're disappointed," he said. "It's the law. The law is very plain."
O'Brien warns that "a tsunami" of older patients is coming, citing estimates that more than 31,000 autistic adults will live in the state by 2020. O'Brien has worked with welfare officials to set up two funding streams for autistic adults. But he admits the programs aren't nearly big enough to cover future demand.
With children, many problems involve ABA, even though the law mandates coverage for it.
ABA is an individualized approach to behavioral therapy that involves assessment and teaching based on ideas such as positive reinforcement. The therapy has been shown to produce large improvements in social behavior and communication, as well as basic life skills.
But some insurers avoid covering therapies a child can get at school, including ABA, said Bouer, dumping the costs onto public schools and other agencies.
When Tony Burke, now 10, entered kindergarten in September 2009, his parents submitted a claim to Independence Blue Cross to get coverage for Tony's ABA at St. Jerome School in Philadelphia. It was denied.
Making matters worse, Tony's ABA provider, the Lovaas Institute, also stopped providing ABA for Tony at home, as the bulk of billable hours would have been at school.
"Our policy excludes coverage for ABA therapy for autism in a school setting, which complies with PA law," wrote Ruth Stoolman, public relations manager for Independence. "IBC's plan designs contain a general exclusion for ALL services rendered in the school setting."
The Burkes didn't think this exclusion was right. Insurers "cover crutches, glasses, hearing aids, and wheelchairs. Can you not use those during the school day?" said John.
After several unsuccessful appeals through Independence, the Burkes found David Gates of the Health Law Project, who filed suit in Philadelphia Common Pleas Court in February 2010.
Over the next two school years, Tony had a behavioral aide in school through the Pennsylvania MENTOR program and Community Behavioral Health, Philadelphia's Medicaid provider for mental health. But the support he got was "not what he needed," said his father.
At the family's urging, Lovaas agreed to resume Tony's home-based ABA therapy in February 2011, with Independence reimbursing them, but ABA in school was still denied.
In July 2011, the court sided with the Burkes, agreeing that ABA should be covered in school.
Independence appealed the decision, and in August 2012, Superior Court sided with the insurer. This decision was based on a single sentence in the law that seemingly prohibits insured individuals, like the Burkes, from appealing final denials.
Tony, the subject of it all, remained unfazed. After one day of court proceedings, Tony provided comic relief as he clambered onto a table in the courthouse lobby and started talking to a portrait, thinking one of his favorite Monsters, Inc. characters was lurking behind it.
But John, a corporal in the Philadelphia Police records unit, and Suzanne, who works in human resources for the city, weren't laughing.
"We have a lot of hours logged into this insurance debacle," said John. On Sept. 13, 2012, he received 29 letters from Independence explaining that recent claims were being processed.
Mountains of paper are stored throughout the family's home: in 20-gallon tubs in the shed, a filing cabinet in the basement, and the storage ottoman in the living room.
In May, Gates argued before the Pennsylvania Supreme Court, asking them to overturn the lower court's decision. "We're cautiously optimistic," said John. "This is it. There's no other avenue at this point."
John and Suzanne are aware that the results of the case will likely not affect Tony. In fact, the Burkes' case applies only to a coverage period from January 2010, when the law went into effect, to July 2010, when their plan converted to a self-funded policy, yet another gap in the law. But that doesn't bother them. "It became not just about Tony," said Suzanne. "It's about all kids with autism."
Now that ABA is a large part of Tony's life, his behavior is much better, said John. Tony gets 121/2 hours of ABA therapy each week through Lovaas at home. This is in addition to the therapy he gets at the Comprehensive Learning Center in Southampton, where Tony enrolled in October 2012. The Burkes are represented by another attorney in ongoing efforts to get coverage for his schooling from the Philadelphia school district.
His play skills are better, said Daniela Andrade, a senior supervisor at Lovaas. Tony has also learned how to shift focus from himself to others.
But his parents wish he hadn't lost nearly a year and a half of therapy. "Where would Tony be at this point if he'd had the services he needed?" asked John.
Another insurer is limiting the number of hours of ABA a child can get. Aetna initially authorizes only 20 hours of ABA per week. But guidelines from the Behavior Analyst Certification Board, which certifies ABA providers, say 30 to 40 hours are needed to change behaviors.
The insurer's policy is in line with current research, said Mark Friedlander, Aetna's medical director for behavioral health.
Bouer, the attorney, is disputing that for several clients. "Aetna is completely ignoring the standard of practice in the industry."
Delayed payments are yet another issue.
When Kara Matunas from Spring Lake Heights, N.J. submitted a claim for therapy for her autistic daughter, Reagan, 2, she was repeatedly denied.
Reagan gets Early Intervention, a combination of speech, developmental and occupational therapy. During seven hours each week, she works on skills like asking for things and properly using her fingers. The state's autism mandate requires insurers to contribute to covering Early Intervention.
When first diagnosed in November, Reagan "was an unhappy kid." Tantrums and meltdowns were the norm until she started therapy. Now she's calmer and speaking more. "It has been amazing," said Matunas.
When Matunas submitted the first claim to Horizon Blue Cross, she got a check minus the co-pay amount. But then she immediately got a letter denying the claim and requesting documentation on Reagan's diagnosis code.
On four subsequent claims, Matunas highlighted this information, but each time the claim was denied on the same ground. It takes a minimum of six weeks to get reimbursed, said Matunas, though Horizon maintains that most claims are paid in 30 days.
Two of the denials were "incorrectly generated due to a manual handling error" by an employee who has now been retrained, Thomas Vincz, Horizon's manager of public relations, wrote in an e-mail. The company has reached out to the Matunas family to resolve the issue, but Matunas isn't hopeful.
"They're just purposely delaying coverage," she said. The claims are eventually paid, but the family is left paying $400 to $500 up front each month, and things start to get short, she said.
Here's another gap: The autism laws apply only to traditional, fully-insured plans, in which companies contract with insurers to pay claims. These are becoming less common as large firms convert to self-funded plans, where employers pay for care more directly from their own funds.
More than two-thirds of large firms in Pennsylvania and New Jersey are now self-insured, and beyond the reach of the laws.
Both measures were written with a focus on ABA, which may limit how they can be applied to new therapies, said David Mandell, director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania. "They solve an immediate problem, but they don't serve a long-term vision."
Autism New Jersey hosts a working group where representatives from the state, insurers, parents, and others discuss issues.
Pennsylvania State Rep. Thomas Murt (R., Montgomery) has also heard the challenges families are facing. He is sponsoring a bill to study the law's effects.