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Autism Insurance Coverage: The RIGHT Questions To Ask ….

Today the  Michigan Autism Insurance Reform law went into effect – YAHOOOOO ……


Remember folks, the insurance companies didn’t WANT this law. As a matter of fact they spent a lot of time and money fighting to keep it from getting implemented. Much as we’d like to think that now that the law is a reality they’d be our allies in helping our children get the help they need the reality is that, well, they’re going to be more like a bratty toddler stomping their feet at bedtime …….

So, much like the parent of a bratty …. or “spirited” …. child how do we have to respond?



Need proof the insurance companies are not that concerned about making your life easy?

Here’s a screenshot from my search today (Oct 15th)of a major insurance company’s list of providers at 12:28 pm ……


Hmmm……no BCBA’s. Gonna make getting ABA for my child pretty tough considering without a BCBA I can’t get it covered.

Well, then SURELY I’ll be able to find a Speech or OT therapist right?

Nope! Sorry! Out of luck my friend.

So is there such a shortage of providers in the state of Michigan that the insurance companies simply can’t find any?


Is there a shortage of providers in the state, compared to where it needs to be based on the numbers in the state, …. yes.

HOWEVER, and this is a BIG HOWEVER the insurance companies have not made getting providers for these new treatment areas a big enough priority and worse then that, they’ve so ridiculously low balled providers that they’re now having to scramble and renegotiate rates to get them on board.  They’re hiding behind excuses like “there was a misunderstanding” on the rates but the reality is that the “misunderstanding” was that the insurance companies thought they’d be more successful strong arming providers.

Why does this matter for parents?

The insurance company delays and foot dragging means fewer children can be helped, waiting lists will be longer, delays greater and the implementation of this legislation will be dragged out. Does anyone really think if the law would have included a $1 million fine for every day that the insurance companies didn’t have an appropriate number of therapists/BCBA’s on board we’d be seeing these …. shortages?

Yeah, me either.

Ok, so does this mean YOUR child can’t get help or therapy? NO!!!

Does this mean that your therapy won’t be covered? ABSOLUTELY NO!!!!

Does this mean you’re going to have to battle old school with your insurance company?

Sadly…..in many cases ….. YES!

So how do you fight Goliath?

Here’s a starter’s guide from first hand experience battling insurance companies both as a parent and a provider.

Let’s start here …….

  • Realize you’re going to have to battle and your notes will be the key to holding folks accountable and getting answers. Insurance companies love running folks in circles  and you need a roadmap to keep from getting confused and lost. Soooooo, pull out that brand new notebook and write “INSURANCE COVERAGE NOTES” across the cover in big letters. This is now your official transcript and record of EVERY call and exchange you have with the good folks at the insurance company. For those who like a more tech answer there’s a number of note taking and organizing programs out there (my personal favorites are Evernote and Workflowy*). What you use isn’t nearly as important as the fact that you use something to keep it all straight and organized!
  • What do you record? EVERYTHING!!!!!!!!
    • Phone Calls
      • Time of call
      • Duration of call
      • Name(s) of people you talked to and their departments, even their personal extension if you can get it.
      • Questions you asked them and their answers. Since it’s common when dealing with insurance companies to get different answers from different people it’s not a bad idea to make sure you put WHO told you WHAT next to their comment.
      • If they say they’ll send you something or get back with you …. find out WHEN and write it down.
    • Letters/Emails/Texts/Pony Express/Smoke Signals
      • Anything you get in non-voice format DATE the literature the day you get it and file it with your stuff
      • If this is something you’ve been waiting to receive it’s a good idea to go back into your notes and put a “rec’d: date” next to it in your notes. This lets you know when you review your notes that you actually GOT what they sent you
  • If you don’t already have one get either a filing cabinet or (if you’re optimistic) a small filing box. Seems like overkill? Not for a moment my friend because you are going to have a TON of paperwork, bills, letters, explanation letters, denial letters, approval letters, reports, etc. that you’re going to  HAVE TO KEEP TRACK OF AND BE ABLE TO FIND. If you try to do this on the fly you’ll not only get buried and confused you’ll realize that the one CRUCIAL letter you HAVE to have …… probably got lost in the back of your car and tossed with a crumpled Happy Meal box.
So, what do you ask when you call the insurance companies to get  young junior the therapy he needs?
First of all, remember that the person you’re talking to on the other end of the phone isn’t making the rules and doesn’t want to give you a hassle (usually). Many times they’re also your best ally in trying to get the help, information and coverage that you need. Rules are rules, but you’d be SHOCKED how much can get covered or how much easier your process can be IF you have an ally on the other end of the phone. So…..
  • Be nice
  • Be polite
  • Stay calm
  • Say “please” and “thank you”
  • Be firm but nice
  • Be persistent but nice
  • Be a pain in the butt? Sure, but do it nicely
  • Remember, your goal isn’t winning an argument it’s getting your child covered (good GOD is this a hard one to remember!)

Here’s a starter list of questions ….. customize as you need to ……
  1. Does my child need to see certain providers?
    • Can you tell me who is IN-NETWORK for (Speech, OT, PT, ABA, Nutritional Counseling, Psychologist, Psychiatrist, Social Worker, Social Skills training, etc.)?
    • Is the PLAY Project covered?
    • How about bio-medical treatments?
  2. How do I begin using these services? Is the process the same for each therapy my child receives or is it different for different therapies?
    • Do I need a new evaluation?
    • Do I need a pre-authorization?
    • Do I need a note/evaluation from my Dr.? If so is my Pediatrician good enough?
    • Do I need a note/evaluation from my therapist?
    • Can I continue to use the therapist/BCBA/etc. I’ve been using for the past four years or do I need to find someone new?
  3. How do I find a therapist or provider that’s covered under my insurance?
    • What do I do if there’s no provider currently covered in my area?
    • How do I get an “out of network” authorization?
    • Who pays for an “out of network” provider?
  4. I’m hearing rumors that some insurance companies are making people get a new diagnosis first, but my son already has a diagnosis from his (school, teacher, current therapist, doctor, neurologist, neuropsychologist, etc.) …. isn’t that enough?
    • My child’s last assessment and diagnosis is only  (2,3,4,5) years old ….. do I need a new one?
    • Who pays for these new evaluations and assessments?
  5. What are my copays and deductibles going to be?
    • Is that per visit? hour? day?
    • Is that per therapist? per treatment?
    • Do I pay the therapy provider directly or do I pay the insurance company and they pay the therapist?
    • How does it work?
    • Who keeps track of how much I’ve paid/have left (you KNOW regardless of what you’re told here the answer is YOU!!!!)
  6. I’ve heard some insurance companies are capping services at a certain dollar level while some are not
    • Does this apply to my child? plan? policy?
    • Does this apply to my child’s therapy? which ones?
    • What is my yearly maximum for ….. (Speech, OT, PT, ABA, Nutritional Counseling, Psychologist, Psychiatrist, Social Worker, Social Skills training, etc.)
    • How will I know when I reach my dollar limit?
    • If there is a dollar limit and I hit it does this mean my child can’t receive any more treatment
  7. How does this new coverage fit with the Mental Health Parity laws?
    • I’ve heard that behavioral health services with and Autism diagnosis are an “Essential Health Care Benefit” under the Affordable Health Care Law ….. is that true? What are the “Essential Health Care Benefits” What does that mean for my child’s coverage then?
  8. Are there any age limits?
    • Does it end when he turns 18 or at the end of his 18th year when he turns 19?
  9. I’ve heard that for some plans the limits/age limits are different if it meets the “medical necessity criteria”, what does that mean?
  10. What are procedure codes? I’ve heard they’re very important to make sure my therapy is covered properly.
    • Can I please have the procedure codes that you use and approve so I can coordinate with my therapist to make sure I’m using the correct codes?
  11. I’m hearing a lot about “Centers Of Excellence” or “assessment centers” what are those?
    • Does my child have to go there for therapy?
    • Do they have to go there for their evaluations?
    • Do they have to go there for any therapy evaluation or just to access some therapies like …. ABA?
  12. I’ve heard that a therapy I’ve been using quite successfully with my child, Sensory Integration, is not going to be covered, is that true?
    • Is there an appeals process that I can go through to try to get this therapy covered for my child’s therapy?
    • Is there a Supervisor or Medical Director that I can speak with about this?
  13. What are the requirements for my ABA tutor/speech therapist/etc.?
    • ABA Related: My child’s grandma/aunt/college student/neighbor has been currently working with him for  10 of his hours each week will they be able to get paid as a tutor?
    • Will my child’s ABA be covered in school?
    • Will this cover my child’s ABA therapy in the community setting?
  14. My child has been receiving outstanding therapy at a wonderful center but the center doesn’t bill insurance and says they don’t plan on changing that policy ….. how can I continue to use this center and have it covered?
    • I live someplace where there aren’t any other providers that specialize with children with Autism, what are my choices?
  15. I’ve been told I have a “self-funded” plan, someone else told me it’s an ERISA plan ….. I don’t know what that means but I’ve been told it means my child doesn’t qualify for the benefit. Is that true?
    • Since I can’t quit my job and my company offers no HMO plan that qualifies what can I do? What are my options?
  16. When does this benefit actually start? I’ve heard it was October 15th but now I’m being told I have to wait until next year?
    • Why doesn’t my benefit go into effect now?
    • Is there anything I can do to change that?
    • Are there any exceptions?
    • Can I appeal that decision to a Supervisor or Medical Director?
And as ALWAYS be it health care or cell phone bills ….. if you’re not getting your answers APPEAL TO A HIGHER POWER!

“You’ve been very nice but I’m not getting all of the answers that I need. Can I please speak with a Supervisor/Case Manager/Medical Director/etc.” 

Be nice!

Be polite!

Be firm!

Be organized!



Remember, parents have been fighting these insurance companies for decades BEFORE this legislation was passed. We’ve got the bloody knuckles, cabinets of migraine medications, bills, bankruptcies and notebooks full of conversations and filing cabinets full of records to prove it. This legislation is only going to be as good as parents like YOU make it. If you let the insurance companies weasel out of providing help THEY WILL!

Even with this law being passed, some children will receive better coverage and more of their therapies will get paid because their parents FIGHT in a polite, organized, systematic, relentless, unstoppable way for them. This new insurance coverage gives all parents another weapon in our arsenal to fight the insurance companies but you’re still going to have to be willing to fight for what’s yours.

For anyone thinking I’m being a little harsh with the insurance companies, seems I’m not the only one thinking that the insurance companies aren’t exactly rushing to help these families – Detroit News – Advocates: New Autism Law Offers Little Help

 “Like” us on Facebook ,  follow us on Twitter,  subscribe to our site via email or our RSS feed for additional stories, tips and information in the coming days, weeks and months regarding this quickly changing Autism Insurance in Michigan landscape!

******* Personal Note *******

Please let me know how the process is going for you – Steve@MyGreatKid.com or let me know on our Facebook page. I’m currently working with a great therapy center – Kids In Motion – which has offices in Highland, Waterford and Commerce if you have a child that needs help please contact me for a complimentary screening. If you don’t live in those areas there are a number of other really outstanding providers in this state, we’ll be putting together a list in the near future but if you have a question before then please let me know.

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{ 1 comment… add one }

  • Autism United 18, January, 2014, 3:44

    I just hate reading about families struggling to get insurance companies to pay up. They say they will, then they drag their feet or give some excuse as to why they aren’t paying. My son, 6 years ago, after treatment and hospital stay for 6 weeks came home (thankfully) but with a half a million dollar bill that insurance said wasn’t cover-able, loop holes or something. And we are still fighting that one. My prayers go out to each and every family that has to fight for health care and fight the people who are suppose to be footing the bills.

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