Kelly Bridgeforth and her husband Kevin, both Air Force retirees, are waiting anxiously for Congress to reconvene after Election Day and finish work on a fiscal 2017 defense authorization bill already four weeks late.
More delay might not worry lawmakers. But the Bridgeforths know that how fast the bill gets negotiated, passed and signed will determine whether their six-year-old daughter, Livia, sees her therapy treatments for severe autism altered or interrupted, possibly for months.
Language in both the House and Senate versions of the defense bill orders the Department of Defense to restore Tricare reimbursement rates for applied behavior analysis (ABA) therapy for children with autism spectrum disorder to the higher levels paid until last April.
The rate cuts were significant enough that some groups of ABA providers stopped caring for military children, telling affected families they can’t properly pay staff or sustain their businesses with such low fees.
The company providing Livia’s therapy, Trumpet Behavioral Health headquartered in Lakewood, Colorado, decided it would be unethical to end her sessions abruptly because her autism includes self-injurious behaviors when she feels overwhelmed or frustrated, her mother Kelly explained.
“She doesn’t have the language to tell us sometimes what she needs, so her communication is to hit herself (in) the temples pretty hard. And if you block that, she will go to a wall or floor.” Therapists “have been working on that with us pretty much for the last two years,” she said.
While Trumpet stopped therapy for most Tricare clients soon after the new rates took hold in April and turned away new Tricare beneficiaries, the company said it would continue thrice weekly sessions for Livia through December, a concession her mom applauded.
Despite the nine-month reprieve, and assurances from Tricare that ABA provider networks remain robust, the Bridgeforths are having difficulty finding replacement therapy. Their first autism case manager at UnitedHealth, the Tricare regional contractor for Arizona, stopped taking Kelly’s calls or responding to voice mail, she said. A second was equally unresponsive. A supervisor finally provided a list of local ABA providers.
Five of them told Kelly they had no hours available. One had only morning appointments which conflict with school hours. The seventh company has afternoon and evening hours open but practices an older therapy technique that Kelly knows would frustrate her daughter and likely lead to more episodes of self-injury. But it’s the only therapy option available to the Bridgeforths, unless Congress restores higher ABA fees by Jan. 1 so that Trumpet will become a Tricare network provider again.
Karen Driscoll, mother of a child with autism who works for a coalition of ABA providers, said the Defense Health Agency doesn’t have to wait for a final defense bill to restore ABA rates. A policy change lowered them; a policy change can raise them, she said. But Tricare leaders defend the new rates, which leaves families like the Bridgeforths in a bind.
Kelly said aggravating the fee issue is another fresh Tricare requirement that ABA therapy technicians be trained and certified. It’s a quality check most commercial insurers don’t yet require, and it gives providers one more reason not to accept Tricare children.
Current ABA technicians must be certified by Jan. 1 to continue to provide therapy under Tricare. The certification requirement for new hires has been in effect since October last year.
Lisa Capra, mother of an 11-year-old with autism, said the lower Tricare fees atop the certification requirement have made it impossible to find an ABA provider for her son in the Dallas-Fort Worth area. Lisa is married to an Army major who is currently deployed.
Kelly Bridgeforth said it’s important to understand what therapy delays can mean to a family. At age 3, she said, Livia had a vocabulary of 25 words, most of which only her parents could understand. After six months of therapy, Livia used 180 words anyone could understand.
“That is not a therapy you can take lightly and say it’s no big deal for this child to be sitting home for six months on a waiting list,” she said.
Last week, managers of Tricare autism care held their third “roundtable discussion” this year with ABA providers and regional contractors to discuss current operations and changes ahead.
Navy Capt. Edward Simmer, deputy director of the Tricare Health Plan, hosted that meeting. He and Richard Hart, senior health policy analyst for autism, agreed to a phone interview Tuesday to discuss what providers were told and the current state of Tricare autism coverage.
Tricare will restore old reimbursement rates immediately if and when Congress orders it. But Simmer said current rates continue to sustain robust networks of ABA providers for beneficiaries.
Tricare fees typically are set to match those paid by Medicare. Because Medicare has no rates for ABA therapy, Tricare decided to use local Medicaid rates plus 28 percent, which is the average difference between Medicaid and Medicare rates for other common mental health therapies.
With the new rates Tricare reimbursements fell sharply, but Tricare capped the cut to no more than 15 percent the first year. Complaints from families and providers spurred the armed services committees to insert rollback language to their defense bills but then delayed final passage.
Despite the complaints, Simmer said Tricare has more than 28,000 ABA providers in its networks, more than two for every one of 13,000 military children receiving or seeking autism therapy.
“We’ve actually added providers under the new rates,” he said. “And everywhere we did have a provider drop because of the rates, we were able to place those patients with other very well qualified providers…So by and large we don’t believe the rates have had any significant impact on access.”
Driscoll said the provider lists Tricare touts are unreliable. She said she queried two clients —large, multi-state ABA providers — to compare employee lists to what Tricare posted. The results showed only 17 percent of providers listed for one company and 28 percent for the other were serving Tricare beneficiaries.
Simmer said Tricare is meeting its access standard for autism care “almost everywhere.” In some areas with long wait lists, the problem appears to be too few ABA providers to meet demand, which hiking fees is unlikely to solve. Driscoll disagreed.
“Not only is access being affected but [military] assignments,” Driscoll said, citing military leaders channeling their own complaints. “There’s a big disparity in what Tricare is saying and what the families are experiencing.”
Simmer said Tricare hasn’t seen a rise of complaints from families or providers. He encouraged families with access issues to contact ABA-trained representatives for Tricare regional contractors. Here’s the phone list:
Humana/ValueOptions (South Region): ABA Customer Service 1-866-323-7155
HealthNet (North Region): (ask for their Autism specialists) 1-877-874-2273
UnitedHealthcare (West Region) ECHO/Autism Line 1-855-874-6800
Also see: Tricare.mil/Plans/SpecialPrograms/ACD
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