Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

I’m Scared.

tricareThe winds of change are blowing.

Major changes to Tricare ABA Policy and Pharmacy Policy are coming down the pike.

Changes that will potentially hurt thousands of children with autism, and medically challenged children become “live” on July 24- 25.

And I am scared.

Mumbo jumbo, double-speak, impossible to meet milestones (at least for my son), threats of outright service cancellation and term limits, age limits, parent participation grades and more are not only unacceptable, they are downright criminal, in my mind.

And I am scared. Scratch that. I am bloody terrified.

The new regulations have more twists and turns than a “Who Dunnit” novel. MSNN and AMFAS worked together to compile an Assessment of New Tricare ABA Policy. This is a “preliminary assessment” in lieu of Tricare themselves actually providing clear, concise points to their contractors (the therapy companies and/or EFMP staff) OR the families, themselves. This post combines this “preliminary assessment” by brains much larger than mine, and what my concerns are, as a parent. (All italicized points are direct quotes from the above linked assessment. My concerns are in bold font. )

ALL military families (both active duty and retirees) must be referred via a TRICARE-authorized provider for ABA services. All authorization will go thr[ough] TRICARE BASIC (medical side) first, which covers the assessment for eligibility for services, plus then treatment program design, supervision of the ABA program and parent training, if approved. The key phrase in here is “TRICARE-authorized provider.” This means if you are a family in a remote region without access to TRICARE approved providers, potentially, your child’s autism diagnosis “doesn’t count.” Likewise, diagnoses through school psychologists would not be accepted, potentially. 

In order to qualify for ABA services, child MUST have an Autism Spectrum Disorder as defined by the DSM-IV. This includes Autism, PDD-NOS, Aspergers and the other disorders under the Autism Spectrum. The diagnosis can be made by a child’s primary care physician, pediatrician or a specialist provider such as a developmental pediatrician. There is a note that the policy will be updated at a later date to reflect the DSM-5, which was recently released. The lack of services for non-autistic children is relatively new. This came down the pike approximately a year ago. While this is not a new development, upholding the view that ONLY ASD kids are allowed this beneficial and potentially life-changing therapy is incredibly disappointing – to say the very least.

The initial ABA assessment must include Autism Diagnosis Observations Scale (ADOS-2) and Vineland Behavioral Scale II (VBS-II) test batteries. (Policy does not state if TRICARE will cover the costs of these tests however). Results of these tests must be included in assessment. The belief is that all children who want to qualify for ABA therapy will need to go through the ADOS again. This must be done by a TRICARE-approved, certified professional such as a psychologist or developmental pediatrician. Currently at many military facilities and the surrounding communities, waitlists for these professionals stretch over a year. That’s right: more than 12 months from RIGHT NOW, your child gets to be REASSESSED for a medical condition he/she may have had diagnosed YEARS ago. Then, the assessment will be scored and the professional will compile a report. A report for which you will need another appointment to get a copy of. From there, an ABA professional must do an assessment, and so on and so forth. So, can your autistic child take a 12-18 month break from ABA? Sure! Will you see incredible regressions and lose valuable time that you will never, ever regain? HELL YES, YOU WILL.

The psychometric testing referenced above must be repeated EVERY SIX MONTHS to assess the progress of your child. You can lose your ABA services if your child does not show measurable progress. For some of our children, simply ‘not regressing’ is considered progress, but will that count when it comes to reauthorizations? Also, not considered is the effect of PCSing, which often results in regression. Additionally, we have questions regarding children that have extreme behaviors (i.e. SIBs, aggression, destructive) or other co-morbid conditions or special needs that make testing difficult or impossible. Let this one sink in a minute. If your child REGRESSES, and regressions are a natural part of our children’s lives – one step forward, two steps back – your child will lose the one service that is supposed to keep them from regressing. Think about it. Swap the word “cancer” for “autism” and “chemo” for “ABA”: If your child with CANCER regresses (ie the tumor grows or spreads), you lose access to CHEMO. You know, the therapeutic help your child so desperately needs? If this happened, no one would stand for it. The NATION would be in an uproar. But, an autistic kid (or few thousand) loses his/her therapy…no one says a word.

These tests can be administered by your ABA provider (some have licensed psychologists or other qualified persons on staff), or if they are not qualified to administer them, by another authorized Tricare provider. There is no mention of what provision there is if there are problems finding qualified providers or for long wait lists for a qualified provider. We are extremely concerned that this alone could delay therapy authorizations for many families. See above. What do you do if you have a 12 month wait for a provider to test your child? And you lose your spot with your ABA provider? And, oh, by the way, now Tricare is imposing a 2-year limit of therapy and an age limit for those below age 16. Yeah, you can apply for a waiver. I’m not going to hold my breath on that going through at this point. Are you?

If you’re stationed overseas, ABA can only be provided by either a BCBA or BCBA-D, regardless of what program you use. If you live in a location where your host nation has no BCBAs or BCBA-Ds, there is NO benefit available for your family. Where are the Army families? Marine Corps? Air Force? 

The policy limits the usage of ABA therapy to no more than two years, but is authorized a year at a time. If your child still shows the need for ABA therapy after two years, you can request an exception to policy waiver, but there is no guidance provided as to criteria for waiver approval. Two-blankity-blank-blank-years. What other medical condition has limits on the time an insurance company allows for treatment?What the hell are we supposed to do with two measly years of therapy? Tricare is saying the needs of a five year old autistic are the same as a twelve year old autistic? That life changes won’t matter? That two years of therapy will effectively “fix” what social, educational, self-care, behavioral, emotional, sensory issues that our children have? Cancer – sorry, dude, you already had your quota for chemo. Guess you get to die now! Mental illness? Sorry, Lady, you’ve exceeded your quota for therapy! Epilepsy? Sir, how many anti-seizure drugs do we have to try with you? You just need to seize or pay out of pocket! No, that is not the way the medical community works. Why is this now the case with our children? Our babies? Our most vulnerable?

Skills gained via therapy must be generalizable between settings and durable over time for continuation of ABA therapy. Generalization of skills is a very difficult thing for most of our children. Who will observe the generalization? Will therapists be able to bill to do classroom observations?  It takes thousands of exposures for generalization to occur. Again, if the GOAL OF TREATMENT (generalization) doesn’t occur, it makes absolutely ZERO SENSE to stop treatment! If anything, wouldn’t it make sense to increase treatment at that point?

ABA is available for beneficiaries aged 18 months to 16 years. We are unsure as to why Tricare has chosen these age limits. COOL! Autism stops at age sixteen, apparently. I didn’t get the memo.

Family members/caregivers must participate during ABA sessions. Your ABA providers will be training you to implement and reinforce skills and behaviors. In fact, the parents/caregivers will be “graded” as the ABA provider must submit an annual report of how well you are consistently able to implement the interventions at home. If cannot do this, you can lose your ABA services, is this qualifies for discharge criteria. Oh. Hell. No. You are going to come into my house and grade me on how I parent? What fresh hell is this?

If your current ABA Supervisor is a BCaBA, they can no longer supervise ABA tutors. All ABA therapy must be supervised by a Master’s Degree level BCBA or Doctorate level BCBA-D. But, BCaBA-level supervisors can be tutors now. At a reduced rate, of course. Soo…great…it’s already hard to find a therapist for our children. Now those who perform this valuable therapy are going to be punished for working with Tricare? How many companies can afford to ask their staff to take pay cuts, just for the “honor” of working with Tricare?

**

I am just stymied at this policy. To recap, more hoops to jump through, more wait time for therapy, duplication of previous assessments, and now limited age and time span for therapy. Tricare has lost its collective mind.

This does nothing to help our families. This does nothing to directly help our children.

Add in the fact that effective July 24, Tricare will no longer be covering compounded formulas for our families.

Add in the fact that respite is on the chopping block.

And I’m beyond scared; I’m pissed!

How munch more are our families going to be expected to take? How many of our kiddos will fall through the cracks and never reach their full potential all because Tricare is trying to do as little as possible? Where are our supposed congressional allies? Where is the news coverage? Why, once more, is debt being leveraged on the backs of those least able to withstand its burden?

When will it stop?

I don’t know. But I do know that slowly but surely, any incentive, any reason for joining all-volunteer military currently used and abused by our government is disappearing. My husband, your spouse, you…have all held up their end of their contract. They have done their time, done their deployments; given their all. And our government is letting them down. Letting US down.

Now, how can we activate our community and let Tricare know that this is unacceptable. That we will not standby quietly and let our children’s futures be systematically stripped away? That we need more than their idea of “adequate” medical care more than we need a goddamn “national park on the surface of the moon?”

463234_3030003243542_410358418_oKelly is a Navy wife and mother to three children; 17 year old NT, 6 and 5 year old boys on the spectrum; and, a brand new baby girl. Kelly has been featured in a collection of essays on special needs children entitled, “Wit and Wisdom From the Parents of Special Needs Children.” She can also be found at MyTidewaterMoms.com, and as a guest blogger throughout the blog-iverse. In her spare time, Kelly is the Blog Master for, and member of, the Military Special Needs Network Executive Board. You can contact her via email at KellyHafer@MilitarySpecialNeedsNetwork.com.

5 comments on “I’m Scared.

  1. Gretchen shea
    July 12, 2013

    Amen, sister!

  2. Lynn
    July 13, 2013

    I would suggest that you send this to Bill O’Reilly at Fox News. He is a bulldog on issues that are unjust. He’s a former teacher and has proven his dedication to the military and their families. (He’s currently on a campaign to get all amputees a $15,000 trac wheelchair where they can go hunting/fishing, etc.). Whether you agree with his stance on all issues, I think it’s worth a try to get him to bring this issue into the media. Good luck!

  3. Heather Hebdon
    July 13, 2013

    Nice summary and clear points. I hope all of us take action to identify those who can and will help.

  4. brenda
    July 14, 2013

    do you have a link for an addy or email that we can petition too?? congress, pentagon, senate and an online petition as well??

  5. Stephanie
    July 18, 2013

    You summed it up very clearly. I’m scared too! We have a 9 year old son on the spectrum who has improved so much through ABA therapy. He’s had it since he was 1st grade and now he’s entering 4th grade this year. 2 year limit? Stops at 16? All these psychometric testing every 6 months take every from his actual therapy! We used to count our blessings & now we’re faced with the uncertain future of how to get the necessary ABA therapy to meet his needs! Very disappointed & frustrated with the government & Tricare.

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