Autism Coverage and The Military

Read the full article, Military Families Battle Autism by Tisha Thompson MyFoxDC.

..Major Andy Hilmes says his son Drew was diagnosed with autism six months before his second deployment in Iraq. To help Drew learn basic skills like speaking and interacting with other children, Major Hilmes put Drew in a special clinic near Ft. Hood, Texas that offers intensive treatment called Applied Behavioral Analysis, better known as ABA therapy. The American Academy of Pediatrics recommends autistic kids get at least 25 hours a week of ABA therapy.

“Without those services, they’re not likely to develop the skills to reach their potential,” says Wilczynski.

But Drew’s mother, Nikki Hilmes, says that’s hard for military families because the military caps how much therapy it covers.

"The military now, with the funding that we get, we are able to provide between 10 and 14 hours," she says.

Military families get their medical benefits through a government-run program called TRICARE. TRICARE refused FOX 5’s request for an on-camera interview, but says its coverage is competitive with other commercial insurance providers.

Karen Driscoll says TRICARE isn’t telling the truth. She says she and her husband paid for their son’s treatment by emptying out their savings, mortgaging their house and finally borrowing money from their parents...

Comments

[Luke Tunyich]

Carolyn M wrote:
“It is a disgrace that the government is not doing more to support military servicemembers and their families.”

This sentence should be repeated again and again till responsible government official take notice about that injustice.

[buy speech]

The good thing about your information is that it is explicit enough for students to grasp. Thanks for your efforts in spreading academic knowledge.
speech writing

[Angela Warner]

Oh Angela, It's much worse than, and in many ways the same as Medicaid... Meaning Tricare. Yep GREAT benefits for our military.

[Angela]

Well I wouldn't call paying out of pocket " a luxury". Although Mastercard,Visa, and Discover are happy as pie I did. I didn't have it, I charged it.

And DOD and all that sounds very much like Medicaid..a PITA.

[Sarah]

ABA therapy is available to active duty military under a program called ECHO, as has already been said.
To be eligible for ECHO, the child must have a diagnosis of an autism spectrum disorder and be enrolled in EFMP (Exceptional Family Member Program).

I think sometimes people get left out of the loop because there are so few people in the military system that can perform a diagnosis, so they are referred out and since in our experience the military peds are useless, uninformed and don't even know their own system, these people are just left to figure it out with a diagnosis and little else.
We were diagnosed within the military system, which helped get our paperwork in order. It happened very quickly, we had no resistance from anywhere (on the contrary - Tricare were very helpful) and the paperwork was simple for us to do, once the Dr had completed his portion.
We do know people that don't want to enroll in EFMP because they think it will adversely affect their careers. But, it is a pre-requisite for ECHO.

ECHO gives $36,000 per year to pay for ABA therapy. It used to be $3000 per month, but it is now more flexible, since there will be times when therapy won't happen (Christmas/holidays/moving etc) and now at least you can save that money and apply to another time.

We consider ourselves very fortunate to have any insurance coverage for therapy. We currently live in a state with no insurance reform for autism and our own ABA therapist had to pay for all of her son's ABA therapy herself, luckily she was able to afford it.

Our biomed expenses are out of pocket, but that is a reasonable cost, compared with the therapy expense. Our son is doing very well, he is picking up speech very quickly and potty training (he is 2.5).
His diagnosis was originally autism (full syndrome) at a modarate/severe level. We all work very hard with him, but I have confidence that he will live a full, independent life.

The biggest problem in the military system is not the insurance coverage - far from it. It is the collection of uninformed idiots calling themselves pediatricians that staff the base clinics.
I begged them to look into my son's bowel problems since I felt he had food allergies and a yeast issue.
They were dismissive, aloof, uninterested and were happy (as are the majority of peds in the US) to just put it down to autism.
I did my own research, worked the problem and got the tests runs via our out of pocket DAN! Dr.
Yes, sure enough - 19 food allergies/intolerances and a yeast issue. Since we started down the route we should have been referred to by a Dr, he has made huge strides.

Right before I disenrolled us from the military treatment facility healthcare option (we now pay more towards his care) I filed a complaint and warned them that they are going to see more of this and they would be well served to educate themselves and get a basic protocol in place (food allergies, OAT test, blood work, stool testing) so they could at least help the parents to solve the problems.
It would probably save them money too, as well as saving a bunch of kids horrific pain and a few marriages along the way.
Needless to say I got the same blank condescension I had previously received. Basically, if there's not an AAP play or a pharmaceutical to treat it, they're lost.

It does seem very coincidental that there are more kids (at least diagnosed) within the military population than the general one. Military parents are more vaccinated than most people (husband has a shot record several pages long including anthrax) and our son got every vaccination known to man (except Heb B at birth - I refused it until he was 1). Luckily they were out of a couple at 18 months and I haven't vaccinated him since.

[Angela Warner]

Kim,

Thank you for running this story. It's been floating around on military lists for about a week now, and I honestly have been too busy to do anything about it.

Tricare coverage looks great on paper, but the reality is, and what most people don't understand, is that less than 10% of eligible dependents have been accepted into the ECHO program which would allow them to access ABA therapy. Believe it or not there are providers at MTF's that still are unaware of it's existance.

The battle to get your child enrolled is a red tape nightmare, because there's another program that you must apply to before starting ECHO paperwork and if you are not accepted into the EFM program ECHO will be denied.

There is also a serious lack of knowledge among Guard and Reserve bases. Nathan's enrollment into EFM was delayed by a year and a half due to lack of knowledge.

There is a lack of providers across the board. Nathan was enrolled in the ECHO program and went 2 years without services because there were no providers. The only and I mean ONLY reason he is now receiving ABA (which has brought remarkable improvement for him) is because of MY BIG MOUTH. I found his provider and she was willing to sign up. Turns out her husband is a Captain in the Reserves and had actually done a tour in Iraq. I wonder where Nathan would be now had he been able to receive services when he was 4 instead of almost 8.

DoD classifies ABA as "special education" and not as a medically necessary treatment. Another way for services to be denied; segregate this patient population - those kids with autism... make their parents jump through hoops plastered with red tape. Many of them will give up.

To top it all off, they deny services to those who deserve it the most. Retiree's dependents. They have given 15 or more years of service to this great nation, and this is the thanks they get from DoD?

And for anyone to say that we are lucky to be receiving these services... well those who can actually obtain them, fine, but like I said Nathan went without for over 2 years and there are far more in his boat. As for paying out of pocket? We didn't have that luxury.

For Danny's voice... that data is from a FOIA covering a 24 month period from 2005-2007. We know the number is increasing, but new FOIA data keeps getting twisted because for some reason it seems they don't want us to have it. hmpf... Imagine...

Visit Autism Salutes if you want the full history on this. All the documents are there and I've written about it extensively. Sorry I've not updated for a couple months minus one recent post. I've been busy with football, and getting my ducks in a row to return to college to pursue my BCABA so I can become a provider to provide therapy for military children. And I have been too upset about the events at Ft. Hood to do anything but pay my silent respects this year.

[bensmyson]

In my State there are NO insurance carriers that provide ANY coverage for anything related to autism.

[Angela]

Benedetta...what is a psychologist going to teach my son? I'm sorry but not everything is "common sense". My son's autism leaves me stumped often. It was an amazing ABA feeding program that got my son eating more than potato chips. It was an ABA program that taught my son his first words. IT IS WORTH IT!

[Benedetta]

I also want to say;
I am so sorry that it is 1 out of 88!!!!!

As a citzen I ask too much from our military.

But I did not ask this from their children nor wanted it!

[Lisa Rupe]

I thought the vaccination rates would be higher too and checked into it - they aren't. I think the 1 in 88 number is more likely what it is for the rest of the country. The military population is all on TRICARE, so it is easier to come up with the numbers from a single source.

[Angela]

"Tricare says "its coverage is competitive with other commercial insurance providers".

Ohh I see. So what they are saying is "We're offering slightly less shitty services and that's all you can expect."

[Hanno W. Kirk, LICSW, PhD]

The Hilmes' experience with TRICARE is about right. TRICARE is held up as this wonderful system for families of active duty soldiers, and National Guard members. However, TRICARE is a umbrella contractor with the US Government. They usually subcontract out various services (including for mental health problems) to other insurers. To make money, those sub-contractors make it difficult to access services, through onerous requirements to obtain pre-certification and issuing limited session approvals. They also make it difficult for providers of services (like myself)to join the network of "approved providers." No wonder our soldiers and their families are not getting the care they need.

[Benedetta]

Guys are you all really sure for sure that ABA is worth it????

When kids are small, looking back on it - the speech lessons was not worth it. The speech therapist may have the theory all down but when it come to practicing it, and doing it --- it was the family that taught him. Sure they gave us great ideas on what to do - and we never saw them again, the rest was left up to us.

Same for physcial behavior. It was left up to us and it was all common sense stuff. Biting the nails was rough. Did any of you have nail biters?

and the other things we have had a psychologist or two. Insurance will pay for 4 hours or even 8. That just might be enough.

Now when my son became older in his teens- then more intense speech was very helpful. The schools in reading classes, writing classes through special ed was great. Also going to an university and they worked with him much like the writing classes in school did anyway. The University did give him a list of how to respond to certain situations. Then once again it was all left to us.

That list was good and I think it is something all teens need; not just mine. He was told how to greet people and then it was the family that made him practice. Say hi, We would say.
That was easy. It was the dead silence that followed that we worked on then. But he has learned to say how you doing, maybe asked something about the weather, small talk - oh well - is it really nessacary anyway?

[DannysVoice]

This family is fortunate to have some of their therapy covered but if the AAP reccommends 25 hours a week then why are insurance companies not being force to cover it!?

Also, that report noted that the Autism numbers in the military are at 1 in 88, much lower than the the recent 1 in 100 from the CDC. Hmmmm...I wonder if that's because military families are the most vaccinated people on the planet!!

[Angela]

That's 10-14 hours more than nearly everyone else is getting. The trend with ABA centers in my area is they are full of military families because they are the only ones getting coverage. While I agree they should get more I hope they realize how lucky they are to receive their 10-14. Private paying for that at $100/hr is killing the rest of us.

[Dana]

As Angela can attest, these benefits are only for active duty family members, and the children have to be enrolled in yet another program (ECHO) to be eligible.

For retiree families that can't afford other health insurance to supplement Tricare, or aren't eligible for any other insurance, there is often no other way to receive some of these very necessary therapies. No family, whether military, retiree, or civilian, should have to choose between paying bills and providing much-needed therapies for their child(ren).

And people wonder why I don't support government run health care.

[mlinn]

Thanks to Karen Driscoll for never giving up and for pushing this issue for all families affected by autism (not just the military). This is an issue of access and accountability -- treatment for autism may be expensive, but until society starts paying the true cost, it will continue to be somebody else's problem (namely the parents'). We need to all fight for full coverage of ABA and biomedical treatments. The true costs of this tragedy is what will drive serious effort to find the cause and a cure--

[Lisa Rupe]

Perhaps it is competitive with other insurance providers - or even better because most don't offer any coverage at all. TRICARE is really missing the point - do they only offer a quarter of the chemo treat a child with cancer has? Of course not, but ABA is lumped into a separate plan - just for disabled family members. I could could write forever - see my article about Autism and the Military Family in this issue of Autism file magazine. We have a long fight to go, but some people are starting to listen.

[HeidiN]

The things I used to recover my kids were not covered by Tricare. I pay out of pocket. I feel for those who can not.

[Carolyn M]

Tricare says "its coverage is competitive with other commercial insurance providers". This may or may not be true. However, even if it were true, its coverage is insufficent to meet the need. Also, unless something has changed, the program that covers this (ECHO) requires the ABA therapist who actually works with the child to have a BCBA. This requirement is an easy way for them to deny coverage. In addition, only active duty servicemembers are eligible for the ECHO program; ABA for the dependents of retired servicemembers is not covered at all (again, unless something has changed recently).

It is a disgrace that the government is not doing more to support military servicemembers and their families.