Sitting on the bottom step of the stairs in his McLean living room, his small hands fumbling with the shoe strings on his blue sneakers, Harrison Weinstock let out a triumphant cheer when he finally tied his shoes successfully.
He just recently learned how to do it. It took him eight months. Harrison is seven-years-old.
His mother, Sara, along with thousands of other military parents of autistic children, credit a therapy called Applied Behavior Analysis with helping their children to make huge strides in their communication and learning abilities.
But, for the last four weeks, fear and frustration has been sweeping through that community of families; fear that the Department of Defense was about to drastically cut ABA therapy.
“It’s terrifying,” said Mrs. Weinstock, trying not to cry. She is often on her own while her husband, a Navy helicopter pilot, is gone on deployment.
“As military families we have a lot on our plates anyway and to add to this the uncertainty of what my son’s future care is going to be is almost more than I can bare.”
The military’s health insurance, TRICARE, covers ABA therapy for active-duty family members. But recently details began to trickle out about major changes coming on Thursday.
Parents, therapists and autism activists say they went to TRICARE’s website for answers because they had not been notified of any changes. Autism Speaks, an advocacy group, says on its website that TRICARE’S proposed policy changes “would have required parents to arrange standardized testing every six months for their children in order to continue receiving care, and demonstrate ‘measurable progress. Continued care after two years of therapy and after age 16 would require a waiver.”
Harrison’s behavior analyst, Maria Soldatenkov, spends 20 hours a week working with him using ABA therapy. She said he has made huge improvements in speaking and reading under that therapy.
“We’ve gone from barely being able to sound out words, to actually asking questions about the content of passages,” she said.
Angry, Senator Kirsten Gillibrand (D-NY) and Patty Murray (D-WA) fired off a letter earlier this month to the Department of Defense writing that they “felt complete frustration and dismay over the recent changes.” Their letter went on to read, “new policies last year resulted in children with developmental disabilities other than autism losing access to ABA therapy. The policies we write about today are another step in the wrong direction.”
“The apparent lack of understanding of the needs of children with developmental disability, including autism, when drafting the recent TRICARE policy changes is astounding,” wrote Senators Gillibrand and Murray.
But, Assistant Secretary of Defense for Health Affairs and Director of TRICARE Management Activity, Dr. Jonathan Woodson, told ABC7 News Friday that those senators and the families and autism advocates all had it wrong. He said they all misunderstood the policy when reading it.
Dr. Woodson said there will be absolutely no change in autism care or coverage for active-duty family members. He said instead, what the Pentagon has done is create a one-year pilot program that expands insurance coverage for autism therapy to the families of retired military members.
He also admitted the DOD failed to effectively communicate that message, creating a public relations mess. “The communication should have been a little more direct,” said Woodson.
But military families and their advocates believe the Pentagon did intend to significantly cut ABA therapy and then back-peddled on Thursday under intense public pressure.
On Thursday the DOD sent out a statement saying, “Contrary to information provided to you earlier about pending changes to Autism services, the Department of Defense is making NO CHANGES for active duty family members seeking Autism services.”
DOD spokeswoman Cynthia Smith told ABC7 News Friday afternoon, “We regret any confusion that we may have caused. TRICARE has progressively closed the gap in ABA services and is committed to providing the right care at the right time to our family members.”
Harrison’s mother says she hopes she can trust what the DOD is saying and that it will not cut her son’s therapy.
“You know, the first time he finished tying his shoe after eight hard months of learning how to do that, you just have those days where you can say, ‘Put this day in the win column,’” she said. “We need more of those days and we get them through ABA.”