TRI­CARE seek­ing right mix of ther­a­pies for kids with autism

The Sun Herald (Sunday) - - News - BY TOM PHILPOTT

Nearly 15,000 mil­i­tary chil­dren with autism re­ceive Ap­plied Be­hav­ioral Anal­y­sis (ABA) ser­vices, usu­ally 20 or more hours of ther­apy per week, to learn de­sired be­hav­iors and douse un­de­sir­able be­hav­iors un­der a demon­stra­tion pro­gram of­fered through TRI­CARE, the mil­i­tary’s health in­sur­ance ben­e­fit.

Though TRI­CARE launched this ABA pro­gram in 2014, and has seen spend­ing rise to $261 mil­lion an­nu­ally, it’s still la­beled a “demon­stra­tion” be­cause the ef­fec­tive­ness of ap­plied be­hav­ioral tech­niques for autism re­mains un­proven, said Navy Capt. Ed­ward Sim­mer, chief clin­i­cal of­fi­cer of the TRI­CARE Health Plan.

“As of right now,” Sim­mer said, “Ap­plied Be­hav­ioral Anal­y­sis does not meet TRI­CARE re­quire­ments for ev­i­dence-based cov­er­age as part of the ba­sic ben­e­fit. It still does not meet what we call the ‘hi­er­ar­chy-of-ev­i­dence’ stan­dard.”

There are, how­ever, sev­eral promis­ing de­vel­op­ments for par­ents who be­lieve ABA does help their chil­dren and worry that TRI­CARE cov­er­age will some­day end.

First, ABA cov­er­age will con­tinue through 2023 un­der a pro­gram ex­ten­sion ap­proved ear­lier this year. Over that span TRI­CARE es­ti­mates that spend­ing on ABA will rise to $430 mil­lion, the re­sult of both med­i­cal in­fla­tion and a steady rise in the num­ber of chil­dren en­rolled in the demon­stra­tion. Sim­mer es­ti­mates that only about half of all mil­i­tary chil­dren with autism cur­rently re­ceive ABA ther­apy.

A sec­ond no­table de­vel­op­ment is that, at the di­rec­tion of Congress, TRI­CARE is fund­ing a $7 mil­lion re­search study, to run the length of the fiveyear ex­ten­sion. The pur­pose will be to learn how many ABA ses­sions are most ef­fec­tive.

“What num­ber of hours a week should a child re­ceive to get the best ben­e­fit” is one ques­tion the study should an­swer, Sim­mer said. An­other is what im­pact those hours of ABA ther­apy have on the fam­i­lies of chil­dren with autism.

The study will be run by the Univer­sity of Rochester and in­volve 130 mil­i­tary chil­dren. With the con­sent of par­ents, half of the chil­dren will re­ceive stan­dard ABA ther­apy of 20 or more hours a week and half “adap­tive ABA” of only five hours a week. Re­searchers will learn “what fac­tors pre­dict which mode of treat­ment is more ef­fec­tive,” Sim­mer says. “Maybe some chil­dren do bet­ter with one, and some with the other. Can we iden­tify those chil­dren in ad­vance [and] de­sign a treat­ment pro­gram up front that best meets that child’s needs?”

Fi­nally, Sim­mer said, TRI­CARE is broad­en­ing its autism pro­gram to en­com­pass com­bi­na­tions of ther­a­pies, not solely ABA. The idea is to fo­cus on “the whole child” while at the same time en­sur­ing ad­e­quate sup­port of par­ents whose in­volve­ment is seen as per­haps the most crit­i­cal fac­tor in ef­fec­tive ther­apy.

Sim­mer re­ferred to a ques­tion asked of 28,000 par­ents of autis­tic chil­dren in 2012 by the on­line sup­port group MyAutism: “Which ther­apy worked best on your child.” Only 15 per­cent of par­ents said ABA, which meant in came in third, be­hind oc­cu­pa­tional ther­apy (39 per­cent) and speech and lan­guage ther­apy (27 per­cent).

“Right now, the Autism Care Demon­stra­tion is solely fo­cused on pro­vid­ing ABA. We went to ex­pand that,” said Sim­mer. “Oc­cu­pa­tional ther­apy and speech ther­apy are al­ready cov­ered ben­e­fits but we don’t al­ways tie them in well with the

ABA. We want to re­ally fo­cus on a more com­pre­hen­sive treat­ment plan for these chil­dren, pro­vid­ing all the ser­vices they need and mak­ing sure all providers are work­ing to­gether as a team. That’s go­ing to be a big em­pha­sis for us.”

Par­ents and other ad­vo­cates for ABA ther­apy are dis­ap­pointed TRI­CARE hasn’t ver­i­fied its ef­fec­tive­ness yet and made the ben­e­fit per­ma­nent. Sim­mer cited two rea­sons. One is that out­come mea­sures ini­tially de­ployed were crit­i­cized by some providers as in­ap­pro­pri­ate, forc­ing TRI­CARE to look for more ac­cept­able tools.

Also, Sim­mer said, some providers are re­luc­tant to use stan­dard­ize scales to mea­sure out­comes, ei­ther be­cause of the cost in­volved or their con­cern that re­quir­ing chil­dren to do mea­sur­ing tasks will crimp their time with ac­tual ther­apy.

“I think we have ad­dressed those con­cerns with the cur­rent set of mea­sures we have,” Sim­mer said. “But it did take time to reach a con­sen­sus with all of our stake­hold­ers on what the mea­sures should be and how best to move for­ward.”

Ev­ery six months TRI­CARE now col­lects ther­apy out­comes us­ing the Per­va­sive De­vel­op­men­tal Dis­abil­i­ties Be­hav­ior In­ven­tory, or PDDBI, which as­sesses progress on each do­main of autism. Two other out­come mea­sures will be used only ev­ery two years, given the time it takes with autism to make sig­nif­i­cant changes.

The So­cial Re­spon­sive­ness Scale, or SRS, will progress on so­cial in­ter­ac­tions be­cause chil­dren with autism of­ten have prob­lems build­ing re­la­tion­ships, in­ter­act­ing with peo­ple or un­der­stand­ing how their ac­tions im­pact peo­ple’s feel­ings.

The demon­stra­tion also ex­pects to use the Vineland Adap­tive Be­hav­ior Scale to mea­sure per­sonal and so­cial skills from early age to adult­hood. Each tool was se­lected, Sim­mer said, be­cause “they are rea­son­ably avail­able and will mea­sure dif­fer­ent ar­eas of progress to give us an over­all pic­ture of how a child is do­ing.”

Some par­ents have had rea­sons to crit­i­cize the ABA demon­stra­tion the past few years. In 2016 TRI­CARE low­ered re­im­burse­ment fees for cat­e­gories of providers and in se­lect ar­eas of the coun­try. Congress or­dered fee lev­els re­stored but not be­fore some providers dropped or stopped ac­cept­ing TRI­CARE chil­dren.

More sig­nif­i­cant prob­lems sur­faced in Jan­uary this year when new TRI­CARE sup­port con­tracts took hold and the sub­con­trac­tor Hu­mana Mil­i­tary hired to process claims for the East Re­gion lacked ex­pe­ri­ence with ABA providers and pay­ment rates, and also had dif­fi­culty screen­ing ABA providers for in­clu­sion in the net­works.

“The largest is­sue was with claims pay­ment,” said Sim­mer. The pro­ces­sor “didn’t prop­erly pro­gram in ABA providers” and “what pay­ments should be.” ABA rates are dif­fer­ent from most other TRI­CARE ser­vices. As a re­sult, TRI­CARE “was pay­ing in­cor­rect amounts, pay­ments were de­layed sig­nif­i­cantly and, at times, claims were de­nied in­ap­pro­pri­ately. That was ob­vi­ously a very se­ri­ous prob­lem.”

Ten months since these prob­lems first sur­faced Sim­mer could re­port “progress,” par­tic­u­larly on claim pay­ments. But he said chal­lenges re­main for adding ABA providers to the East Re­gion net­work “in a timely fash­ion so they could be paid. We still do hear from providers that they are not get­ting added, or that some of their staff are not get­ting added, as quickly as they should be.”

Hu­mana and TRI­CARE have a plan “that should re­solve the re­main­ing is­sues in the fairly near fu­ture,” Sim­mer said. “I’m very op­ti­mistic about that. But that plan has not yet been fully im­ple­mented [and] in­volves hir­ing peo­ple and train­ing them. But we’re def­i­nitely on the path to full res­o­lu­tion.”

Health Net Fed­eral Ser­vices, the sup­port con­trac­tor for TRI­CARE West Re­gion, opted to use the same claims pro­ces­sor that pre­vi­ously han­dled ABA claims. But even that re­gion has had chal­lenges build­ing out net­works with ABA providers. A short­age of ABA ther­a­pists af­flicts many civil­ian com­mu­ni­ties, too.

When the demon­stra­tion ends in five years, Sim­mer said, it is “very un­likely” TRI­CARE will drop ABA cov­er­age. Far more likely is that the ther­apy be­comes “one com­po­nent of a com­pre­hen­sive treat­ment plan. I think it is im­por­tant. I think it does ben­e­fit some chil­dren. We need to fig­ure out which ones, and how much [ther­apy]. And the re­search we’re spon­sor­ing will help do that.”

To com­ment, write Mil­i­tary Up­date, P.O. Box 23111, Cen­tre­ville, VA, 20120. Twit­ter: Tom Philpott @Mil­i­tary_Up­date

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