A new Tricare coverage policy for a specific Autism therapy includes usage requirements for active duty users and – relative to the previous rules – limits who can receive coverage and for how long. In turn, parents, providers and advocates are wondering if autistic military children will continue to get the help they need.
"This is a big deal. It's as if someone in Tricare who doesn't understand autism wrote this policy," said Jeremy Hilton, an autism activist whose daughter is impacted by the disorder.
The policy, which was released late last month and is set to go into effect July 25, alters a set of 2007 coverage rules for an autism treatment known as "applied behavior analysis" (ABA). Considered the gold standard for autism care among medical experts, the method involves up to 40 hours a week of one-on-one sessions where the therapist and child work on coping skills and behaviors.
Less severe cases, or children who are in school, typically receive between five and 10 hours of therapy a week. Treatment lasts throughout childhood or until the patient doesn't need it any more. Therapists regularly reevaluate children to make sure the therapy is focusing on the right things.
Under the current Tricare ABA therapy policy, active duty users can receive up to $36,000 of therapy a year – or between 300 and 720 hours depending on the education level of therapist used -- as long as the provider can annually justify its need. Parents pay a cost share of between $25 and $250 per month based on pay grade.
However, the new policy requires autistic children to take a specific standardized test every six months to measure for "objective progress." If progress cannot be shown or the test is not taken, they may no longer qualify for therapy, according to the new policy.
Users will only be able to receive therapy for two years without a special waiver and must be between 18-months and 16-years-old. Children older than 16 must apply and receive a second waiver to continue care.
The policy also requires parents to "participate in ABA" or face having the therapy authorization revoked. A new group of administrative requirements will also be placed on therapy providers.
As of July 15 – 11 days before the policy was to go into effect – beneficiaries and providers said they had not been officially notified of the upcoming changes. Tricare officials, however, said that their contractors are "currently in the process of implementing the change, including provider information."
Over 23,000 Tricare users have been diagnosed with autism.
Austism experts and providers say the new policy could leave children who need therapy most completely without care. They said the requirements to obtain a waiver after two years, or age 16, have no medical backing.
"That's a very arbitrary timeline and I don't know any basis for it," said Gina Green, a board certified behavioral analyst, expert in ABA therapy and head of the Association of Professional Behavior Analysts. "I don't see a basis for it in research, I don't see a logical basis for it in that I don't believe it's the way most of us would treat most conditions."
Green advised Tricare on the original 2007 ABA coverage policy. They did not ask her for help with the new version.
Tricare officials, however, told Military.com in a statement that the waiver process was put in place "to establish an appropriate balance between access for necessary and effective services and maintaining sufficient quality oversight."
Advocates and parents also worry that the new progress testing requirement will cause children to be dropped. The test that Tricare has mandated -- known as the Vineland Behavioral Scale II (VBS-II) -- was not designed to test for progress and is only available from hard to come by specifically trained providers, experts said. And since autistic children often regress due to life changes like military moves and deployment, showing progress may be too much to ask, they said.
"Deployment cycles, family stress, relocation, new school, or any other life event may trigger a period of regression that often set back a child's development," said Karen Driscoll, an associate director of government affairs and military relations at Autism Speaks.
Driscoll is also a Marine Corps spouse and parent of an autistic child. She said "periods of regression are regular events in the life of a military child." Returning to "previous functioning levels could take months or years" during which the autistic child may need "more intervention and support," she said.
"Policy changes are needed to address the unique needs of individuals with autism and the unique challenges of the military family," Driscoll said.
But Tricare officials said they chose the VBS-II test based off experts' opinions, including advice from officials at Autism Speaks.
"The (VBS-II) is a widely used measure of adaptive behavior that assesses areas of functioning affected by (Autism Spectrum Disorder) and it has been shown to have sufficient sensitivity to indicate progress on treatment goals in several studies of ABA," they said.
Driscoll, however, said that is incorrect. She said the VBS-II test is not designed to show progress and denied that her organization ever suggested using it.
"The guidance Autism Speaks provided is not reflected in the final policy," she said.
And although the Tricare policy clearly states that "no measurable progress on psychometric testing" meets the criteria for discharge, officials said that testing will never be the only factor that keeps a child out of therapy.
"Testing alone will never determine TRICARE authorization for ABA. Our goal is to support our beneficiaries," they said.
Air Force spouse Kathryn Sneed, whose 3-year-old autistic son receives a variety of therapies, said she isn't sure how her family will be able to handle the new testing requirement. Her son has been receiving 12 hours of ABA therapy weekly for a year, but only recently started to show significant improvements.
When he started therapy he could not speak at all. He now uses about 30 words, Sneed said. She worries her son will not make the cut if they have to test for improvements every six months.
"I can't imagine having to do that every six months, that's just ridiculous," she said. "I understand all his other therapies require reevaluation once a year. But every six months? That's not even enough time to do anything."
Because so few therapists are certified to administer the mandated progress test, Sneed worries they will be forced to make a two hour trek from Robins Air Force Base, Ga., where her husband is stationed, to Atlanta for care.
"If I drive or take him to a new place are they going to cover it? It's just such a mess. I just don't understand why the need for it," she said.
Although Tricare officials said their regional contractors will be able to refer parents to providers who can administer the test, Green said the shortage of testing providers could also result in a major backlog and gaps in care for children.
"It's going to be in some parts of the country impossible to find a professional within a reasonable distance who is qualified to give these assessments," Green said. "And now we're talking about having to do this every six months. It's going to further delay access to services and its going to add to the cost of the services."
Tricare's Facebook page last week exploded with questions about the policy from concerned parents and caregivers. But the agency seemed to have little to offer in the way of response – and the information it did offer was sometimes inaccurate.
Parents reported that representatives on Tricare's help line were unable to answer questions and, in some cases, had not heard of the new policy at all. An information page on Tricare's site posted July 11 stated there is no age cap under the new plan and mentions nothing about a waiver when the new policy clearly states that the cap is 16-years-old unless a waiver is obtained.
"Since the customer service reps and … caseworkers had no clue that this policy was going in to effect when I called everyday this week. I'm assuming that you were hoping to implement this policy without anyone being the wiser," wrote Alesha Coleman on Tricare's Facebook page. "Wouldn't surprise me a bit." The policy changes were made in response to the 2013 National Defense Authorization Act which ordered Tricare to provide ABA therapy to all retiree and active duty users. Previously, the therapy had been available only under a special Tricare extension known as the Extended Care Health Option (ECHO), which required a series of special enrollment steps.
Now, coverage is split between the two entities with different requirements on the education level of therapists used in each. Active duty users and retirees also have two different sets of requirements for accessing benefits and different levels of fees.
Some elected officials have voiced their displeasure with how this is playing out. U.S. Sens. Kirsten Gillibrand, D-N.Y., and Patty Murray, D-Wash., sent a letter to Tricare July 10 expressing their outrage over the new policy.
"The apparent lack of understanding of the needs of children with developmental disability, including autism, when drafting the recent Tricare policy changes is astounding," the senators wrote. "Before these new policies are in effect, we strongly urge you to consult with experts in developmental disabilities such as autism and ABA treatment practices."
Rep. John Larson, D-Conn., pushed for House action on the issue. He also said the policy is worrisome. "While we are still in the process of evaluating this coverage policy, I would have serious concerns with any changes that could potentially limit access to care for military families," he said in a statement.
Parents and watchdogs say Tricare is hesitant to pay for therapy because of the price tag.
Tricare is not the only insurer to war over coverage for ABA-based therapies. Several large civilian insurers, including Blue Cross Blue Shield, have been involved in lawsuits across the country over whether or not they must provide coverage.
Thirty-three states currently require insurers to cover ABA-based therapies. But only 26 states are including an ABA coverage requirement in their health insurance marketplace plan under the Affordable Care Act, according to officials with Autism Speaks.
The official OSD Tricare policy manual can be found here.