By Sarah Stockwell
Military families with a child with autism are used to fighting. The servicemembers fight on the battlefield when deployed and the spouses, with constant military moves in and out of states and school districts fight for their childrens’ right to an appropriate education as well as the daily battle to raise a child in a world they are ill-equipped for and vice versa. One fight that military families with children with autism should not have to face however is the battle to ensure their children receive appropriate medical care. There are estimated to be over 20,000 military children with autism.
One such fight is gearing up in the military community right now. Tricare, the military healthcare provider has made drastic changes to the way it provides ABA therapy for military dependents with autism spectrum disorders and these changes are due to take effect on the 25th of July.
Military families have been campaigning for years to improve access to autism therapies for their children and until now, have been making progress. There was a semi-victory in this respect for coverage for retiree families and wounded warriors, when a ‘pilot program’ was included in the recent NDAA. Shortly after Tricare announced (later than was originally required) the details of this pilot program in June, advocates in the community noticed that Tricare had made unannounced, extensive changes to the eligibility criteria and method of access for ABA under Tricare, which would apply to the children of both active duty troops, retirees and wounded warriors.
A small smattering of the changes –
• Children will need to receive ADOS-2 and Vineland-II to ‘confirm’ their diagnosis of autism (after obtaining a DSM-IV diagnosis) for eligibility of ABA therapy and Vineland will need to be repeated every 180 days, ADOS-2 each year.
• Children older than 16 require a ‘waiver’ to be granted ABA services, effectively imposing an age limit on the provision.
• ABA will only be authorized for 2 years, one year at a time. Once the 2 years are complete, a waiver is required to continue treatment.
• Vineland and ADOS are required to show ‘progress’ and the absence of progress, as measured by these tests, is a criteria for discharge from therapy.
• BCBAs and BCBA-Ds are required to supervise the program. BCaBAs are now demoted to technician level therapists and cannot supervise programs.
Some might argue that ‘at least the military get something’ in terms of insurance and yes, that is true. Or at least it was. Because of these changes, many children may be denied services for a multitude of reasons, some of which are outlined.
- High-functioning children will be at risk, because their Vineland and ADOS scores might not be significantly impaired enough. This also includes children like my own son, who has progressed from moderate/severe autism to a high functioning child, BECAUSE of the intervention he’s received. He has progressed enormously, but he still has autism. He still has challenges that need intervention.
- Children over the age of 16 will lose coverage without a waiver. There is no data that supports the lack of efficacy of ABA in children over 16.
- What about the children for whom ADOS and Vineland are not suitable tests, or unable to be administered because of other special needs? Technically, since Tricare requires these for services, then they can also be denied.
- If the local area doesn’t have qualified Tricare-authorized providers of these test batteries, or the waitlists for these professionals are long? If there aren’t scores on file, your child also won’t be approved for therapy, regardless of what those scores might eventually be. As a community, we already know that the wait to obtain a specialist evaluation for autism can be anywhere from 6-18 months, depending on location. If every military child needs retesting every 6-12 months, the strain this will put on an already limited supply of qualified professionals will be substantial and those children waiting for their initial evaluation will have to wait longer, as the demand for these professionals increases.
- As one developmental pediatrician has pointed out to our community – the tests can be learned, so, every time they are run, especially within a short timeframe, they become less reliable.
A notable point about the requirement for standardized testing – no other medical therapy or treatment requires specific results for access to, or continuation of care. It sets a dangerous precedent for medical treatments and therapies to set conditions that can deny care based on standardized testing results, especially when our children with ASD are anything but standard.
The requirement for measured progress against these standardized tests can easily be derailed by a Permanent Change of Station (PCS) or deployment and, as written, this lack of progress could result in a loss of therapy at the precise time more is needed to counteract the change in routine or stress that the child is dealing with.
The new Tricare policy limits therapy to 2 years duration. We are all dumbfounded as to where they got this from. Can autism be remediated in just 2 years? What about a child that moves twice in 12 months (as we have done)? They will likely lose at least 3 months of therapy because of moves, delays in getting appointments and evaluations completed (and of course the testing batteries now required). Do those months count towards their 2 year time period? What if the child regresses (which is common with a PCS), will they be given ‘extra’ time to recoup those skills?
Military life is transient. Children move often and each move can spark a regression which can take months to remediate and the limits Tricare are imposing on therapy are simply without basis.
What other chronic health condition has a limit placed on the duration of therapy or the age at which services end? For diabetes, does health insurance cut off treatment in the absence of progress? Is chemotherapy only available to people of a certain age? Of course not.
Tricare has no such limits on any other medical treatment or therapy and the military community believes this policy change to be specifically discriminatory to children with autism. It is another dangerous precedent to set. It is also the only therapy that has never been provided to military children at the levels either their doctors prescribe, or as recommended by medical professionals.
ABA therapy is well-established as a medical therapy. It has been well-studied and researched. It is the only proven-effective therapy for children with autism. It helps children and in many cases (sadly not all) can lead to a child becoming an independent adult. It is covered under Medicaid services, also a federal provision.
Legislation has been passed in over 30 states to mandate ABA therapy for children with autism. Unfortunately, Tricare is a federal provision, so none of this legislation benefits military children, even if they are assigned to a location in which there is autism therapy legislation. Medicaid waivers are available in some states for children with autism, although the wait lists are often considerable, in Colorado for example, the wait is approximately 4-5 years. Given that military families move every 2-4 years on average, they are rarely in a location long enough to benefit from these programs either and when moving from state to state, they go right to the bottom of the waitlist in their new location, assuming it is ever worth it to join the list in the first place.
Let’s consider how this policy change has been implemented. At the time of writing, Tricare has not formally notified either beneficiaries, ABA providers or physicians of these changes. On Thursday last week, just 2 weeks prior to the implementation date of 25th July, Tricare posted information on their website about the new criteria, but did not include all of the new policy points. Their customer service representatives have no answers for families and even military contacts aren’t aware.
Instead of a managed, considered policy change that has a planned implementation and readily available clarifications for families, families are left in the dark, wondering whether their children will lose their therapy. If it weren’t for military family advocates we wonder if anyone would even know about these policy changes? Since when has it been acceptable to make such enormous changes without so much as a letter or email?
Our nation’s military families deserve better. Families who have a parent deployed in a war zone should not be subjected to this kind of uncertainty. They trust when they go off to war that the government will take care of their families. With this poorly thought out policy, the government is breaking promises to the military families that risk so much and that is not something that any of us should stand for, military or civilian.
Some might ask why they should care, after all, there are plenty of non-military families who don’t have therapies covered for their children.
Here’s one reason – much of the autism therapy legislation is based on the military provision. The federal government often sets the standards for treatment coverage and it is a much easier battle on a state level when families can argue that the federal government covers such a therapy, so therefore why should states not?
This is an enormous step backwards for all of us. It sets dangerous precedents for how medical treatments can be limited by non-clinically directed policies. What’s next? Why can medical treatment be provided for some conditions, but not others? If the Department of Defense and Tricare can do this, what’s to stop your state or insurer deciding the same, for any other condition?
Here’s another reason, from a cost standpoint, this makes no sense. It is far more cost-effective to treat children when they are young. The earlier the intervention, the better the long term outcome. Limiting the therapy to 2 years does not allow for a clinical decision to be made on time for discharge after appropriate progress. Not to mention the added costs, that will run into thousands of dollars, for each occasion of psychometric testing. Providers already have to submit progress reports using more appropriate reporting methods, such as VB-MAPP or ABLLS, so a progress report requirement is not new.
These policies have nothing to do with improving the quality of services available to military children. They have everything to do with cost savings and restricting, denying and creating barriers to care. This is a poorly-directed, at best, attempt to save money, from a healthcare provision that covers nicotine gum and Viagra.
Senators Gillibrand (D-NY) and Murray (D-WA) have sent a letter to Tricare asking for an explanation for the changes and on what basis they have been made.
Families are also urged to write to their representatives, asking for an explanation. American Military Families Autism Support has also written a sample letter for those who wish, to send to their representatives. This letter can be found here.
As military families, we ask for your support. You know you can count on ours.
For more information on this issue, please see the AMFAS ABA Operations Center, which includes all information and news coverage on this issue.
The military community has come together and is calling for a halt to the implementation of the new policy until it can be reviewed by experts in the field, or a return to the old policies, which still required progress reports and periodic renewal of authorizations, but considered each child individually rather than how their progress compared to a standardized test score.
Sarah Stockwell is a former chemical researcher turned stay-at-home parent. She lives in Colorado Springs, Colorado with her husband Jeff, a Lt Col in the United States Air Force and their son Tom, who was diagnosed with autism at age 2. Together they work towards recovery whilst enjoying the beautiful Colorado outdoors. Sarah has written for The Autism File magazine and enjoys stained and fused glass art.