Dear Tricare: A Mother’s Response to the New ABA Policy
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Dear Tricare,
I am an Air Force wife and mom to a 3 year old little boy with Autism, SPD, Apraxia and a Feeding Disorder. I just found out last week about the new changes coming to your ABA policy and am sad and outraged at the way military families with special needs children are being treated. I can only assume that those of you who made these decisions do not have an autistic child and therefore do not fully realize how badly this will affect our children and our entire family.
Because of ABA my son has learned many things. When he could say no words they taught him how to imitate so that he could imitate not only actions on command, but also sounds and then finally a few words. They have taught him many educational things as well. Recently, ABA has been helping us with many behavioral issues including my son banging his head on the floor and wall, his shaking, his anxiety issues, his non social appropriateness and non-awareness of others, and more.
Imagine with me for a minute that a child of yours was slamming their head into a wall or floor. Imagine your horror and absolute helplessness to know what to do. Now imagine that the one person who can help you with this issue was taken away and you were not able to communicate with them or get the help you so desperately needed. This is just a small view into the world of autism and what you will be taking away from us as parents and from our children.
Military families with special needs children have special circumstances. As military families we deal with deployments, separations and multiple moves. All of these things affect an autistic child in a deep way because it affects their schedule and the structure that they so desperately need in their lives. Change is a huge factor in their lives and can trigger things in autistic children that can make them relapse or affect them severely in other ways. Military children need ABA to help them relate and to get through the many changes that military life brings.
Autism is something that has an affect on the entire family. Due to the many therapies that our children must be in and the ins and outs with what we we as parents must deal with on a daily basis, the stress can take a toll on a family like no other. It takes a toll on these families marriages and on the other siblings in the family. Because of this, many families have to go through counseling or get medication due to anxiety and stress. ABA helps with a family’s stress level, by helping give solutions and tips to make our lives better and to help our autistic children. Taking away these services is another way of making the stress in our lives even worse, and hurting entire families.
Let me take time to point out a few things about your new policy changes and explain just how deeply this will affect us and other families who have a child with autism.
- “The psychometric testing 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 re-authorizations?”
The fact that testing has to be done every 6 months is absurd. My son’s other therapies re-evaluate once a year. That makes sense because a year is enough to time to see some changes, but 6 months is nothing. The thing with ABA is that it takes time. Change does not happen over night for autistic children and it sometimes can take YEARS to see measurable progress. Giving these children only 6 months at a time is not fair and more time to show change is needed.
- “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.”
This is another absurd policy, as two years is little time for an autistic child. Is the child no longer autistic after two years? Of course not! So how can you limit their time to get help? My son has been in ABA for only one year so far, but I have noticed that just as we get help for one problem, another one takes its place. That being the case, I know my son is going to need help for more than two years. He has so many problems and ABA can only work on a few at a time. The older he gets the more things we need help with. I am sure it’s the same with other families. By limiting us to only two years of ABA, you are limiting the help we can get our children. Help that will make them into the adults that we want and need them to be.
- “ABA reinforcement under the ABA Pilot requires a 10 percent sponsor/NADFM cost share, regardless of whether they are using Standard/Extra or Prime.”
This policy change will affect many many families. If we have to pay 10% cost-share instead of the $25. a month we are paying now, my son will no longer be able to receive ABA therapy. My husband is an E-4 in the Air Force and does not make a lot of money. We already are paying extra gas money for all the other therapies we take my son to, not to mention all the other therapist-recommended things we have to buy to help my son. We had to re-arrange our budget just to fit in the extra $25. a month, there is absolutely no way we could afford to pay more.
Keep in mind that not only does my son need ABA services for his Autism, but that these services also help in his other diagnoses as well – the SPD, Apaxia, and Feeding Disorder. Without ABA, my son will not get the help he needs in any of these areas and therefore will not be able to improve in his other conditions as well as his autism.
Look at these pictures. Look at the pictures of my son and these children and tell me you can still say no to giving them the help they need. That you can say no to giving them a fighting chance. This could be your child. And if it were, you would understand why we are fighting this so hard.
I hope that you take a look at your new policy and really think about how this is going to affect thousands of people. I beg you as a mother who loves her son and who has been fighting for him since he was born to re-think these changes.
Sincerely,
A very concerned mother
To my readers:
If you are reading this and want to find out more and want to help, please check out links HERE and HERE. To help please sign this petition, use this letter to write to your local representative, and join and share this Facebook event to raise awareness. I and many other families thank you in advance.
🙁 Awful. I’ll sign that petition…
Thank you Mandi, I appreciate it!
My fellow sister because we both our members of the EMFP Family and AF. Well said!
I feel your disgust and anger. We have three enrolled in ECHO Tricare. My hubby is headed out tonight for a three weeks TDY overseas. It pains me to see him worried about leaving with the fight and three kids. Not only has Tricare cut ABA therapy. They have stop paying for all compound medications. Now all USMC EMFP effective OCT 1 get only 20 hrs of respite if they qualify . This effects every state they will be WAVE of large number of welfare and Medicaid waivers applicants. Tricare pick a fight with the wrong family.
You do realize that last point, the 10% is NADFM… you are ADFM. NADFM would be retirees or reserves that previously had zero benefit, for these members, the PILOT (long overdue from law to actually getting off the ground) is a chance to open the benefit up to them. Your copay ‘should’ stay the same (TRICARE ECHO) and not switch over to the 10% rule. So in their case, that is the ONLY good news about this policy shift. As to all your other points… spot on… I am in the same boat. Navy, 3 children, 2 w/ Autism. Tricare (via ECHO demo project) and ABA have been great. I could not imagine my $35 copay/month being thrown away in light of the other points brought up in this ‘new’ policy doc (the 2 year limitation, the recertification (using a test meant to diagnose, not to measure progress)). I am happy with what I have received so far… and outraged at the changes this new policy document suggests.
oh and not to mentioned I and others have been facing a different wrinkle/challenge before this announcement. The shift of contracts from TRIWEST to UNITED Military & Veterans HealthCare for the administration in the West region. Let us get that right first before adding this new July 25th policy doc into the mix!
ABA is STUPID! I have a wonderful little boy who has a funny thumb and a bad leg. His mind is sharp but his body is 12 months behind in motor skills due to his challenges. We rely on Tricare insurance to cover our orthopedic specialist and occupational therapy. These cuts will be detrimental to us and many others. Really, there’s actual WASTE they could be cutting. Special therapy is not wasteful! It’s everything to the family when a child finally manages a skill that has long been out of reach!
I too am an Army military spouse with a 5 year old son who was diagnosed with Autism. I am angry and feel as if TRICARE has failed our families to provide the care our children need. This was careless and neglectful to our children’s needs. I have signed the petitions, sent 15 letters out to congressmen and women all over and to each one of the Armed Service Committee, pleading them to stop these new policies from going into effect. My son just started ABA in Feb of this year and has shown milestone improvements. He refused to potty train, but the ABA got home to potty train. I agree none of those on this policy committee must have children with Autism. And no it does not just magically go away. I have cried hoping that my child won’t lose his services and regress. I hope that our cries and pleas have not fallen on deaf ears.
“ABA is STUPID”? Are you freaking kidding me? My son who is 4 and has autism has came a long way due to his ABA therapy. No therapy is ever stupid for a child. My son needs his ABA therapy. He has came so far since starting and has so far to go. I too am a Air Force wife and understand the challenges we face every day. My son is a daddy’s boy and while my husband is away on deployments and TDYs my son misses him so very much. The military members need and deserve to keep our ABA therapy as it is. No 2 year cut-offs and every 6 month evaluations. I’m so angry at the moment. Why, of all the things we could cut, would make changes and cuts to ABA? Why not cut things that are less useful like movie theaters on base and commissaries. I understand why we have those things but they should go before any tricare benefits. If they keep making cuts to my sons therapy then it will be pointless for my husband to renew his contract. It’s not like the pay is very good. The only reason to stay in would be the benefits but with cuts to those I see no reason to stay. The military is falling apart! We need to focus on families and their needs.
Well said, Kathryn! As a military spouse and a certified provider of ABA therapy, I am extremely saddened by the cuts being implemented on July 25th by TRICARE. Additionally, I am worried about the lack of communication from TRICARE between providers and parents. TRICARE’s choice to remain secretive about the changes indicates, at least to me, that they are aware of the tremendous negative impact these changes will have on our children.
I continue to witness many other ‘elective procedures’ being covered by TRICARE. To my knowledge, these programs are not being restricted or eliminated. I suggest TRICARE start with those programs and takes the opportunity to educate themselves on the proven effectiveness and expectations of ABA therapy. Our kids NEED ABA therapy; Our service members DESERVE to know their children are being cared for, while they are caring for our country.
What is going on?? We received a call from our ABA provider saying to contact Tricare that changes are taking place that will affect our son’s ABA therapy? We just received authorization through Jan 2014. My husband is retired Air Force. I am digging information off Face book and blogs versus hearing first hand from Tricare… There hasn’t been any communication from Tricare that there is any type of change.. this is insanity!!!!!
We are an active duty Army family. Our five year old daughter has autism. When are people going to open their eyes and ears and realize what is happening to this country. Our armed service members volunteered to stand up and fight for our country. Why is it ok for people like my husband to risk his life defending the country he loves, yet the same country wont help the autistic daughter he loves. Our government needs to stop taking from those who protect this country, stop now before our soldiers stop caring and refuse to protect this country. I have signed this petition and have shared the link all over Facebook and twitter. Please everyone do the same.