Autism, ABA, and Insurance (oh my!)

We have had some harrowing experiences with insurance coverage over the past few years.  I think any autism parent can say that.  I do, however, have a unique perspective since I work as a nurse case manager for an insurance company.  

When I worked in the hospital, I adopted the whole “evil insurance company” mentality, I will admit.  How did I find myself working for an insurance company you ask?  For me, it was a matter of family- not working weekends, holidays, nights, having a regular schedule, and gasp….making more money.  Oh, and working from home.  Understand I would not have stayed at this job for coming up on 9 years if it was not also intellectually challenging, and if I didn’t come away with the feeling that I have helped someone significantly pretty much every single day.  Anyway, enough about me.  What I have found over the years is that this whole insurance “vs” (for lack of a better word) medical provider relationship is MUCH more complicated than most people could ever realize.  And while it’s so much easier for us as patients to lay the blame on the insurance company, it so often isn’t the case. 

For a few days last week, I thought this philosophy was coming back to bite me.  My husband’s employer does their open enrollment in June and the new insurance starts July 1^st.  I should start by saying that when my husband was offered this position, we vetted the health insurance plan almost more than the actual job, and it was just as important, if not more so, than salary.  The insurance was amazing, with a few small exceptions, and it really did influence our decision to make the change.  And for the first time ever, my sons were able to get ABA.  If you follow my blog on Facebook, you know just how amazing this has been, especially for our younger son.  We are seeing so much progress, and we only started ABA back in March.  So when rumblings started that they would be switching insurance providers, my mind started going a million miles a minute.  I asked John so many questions that I am sure he was ready to muzzle me (no comment John, no comment).  I am sure I am obnoxious, but it’s with good reason.  I can’t even begin to explain how many hours I spent filling out assessments, asking for letters from different people, faxing, oh did I fax, and calling the autism care coordinator (and constantly slipping in the fact that we work for the same company).  It paid off, and the team we have in place is amazing.  The idea of possibly losing that- I couldn’t even bear to think about it.  Luckily, when we found out who the new company would be, I ran it past the ABA company coordinator and she said she works with them frequently- so I tried to breathe.

And then last Thursday John had his open enrollment meeting.  And he texted me that everything looked good, except….a small passage in exceptions:

“non-medical counseling or ancillary services, including but not limited to custodial services, education, training, vocational rehabilitation, behavioral training, biofeedback, neurofeedback, hypnosis, sleep therapy, employment counseling, return to work services, training, educational therapy or nonmedical ancillary services for learning disabilities, developmental delays or autism”

Knife in my heart.  I will admit it, I initially freaked out at John.  I try to stay calm, and I usually do a pretty good job, but when it comes to the boys….yeah, I suck at it.  God bless him, John emailed the HR rep, even sent her a copy of the habilitative services mandate for Maryland.  I couldn’t just sit there and twiddle my thumbs, so I scanned the entire document, emailed it to the ABA coordinator and she confirmed my fears- this was an “autism exclusion clause”.  Which basically meant NO coverage for autism.  Not just aba either- we are talking taking major steps back and not even getting occupational therapy for autism.  We would likely be able to get limited sessions under the “rehab” heading if we used the diagnosis of developmental delay, but that’s it.  This is right where we started when Jack was 3.  Nightmare. 

I think the biggest question you are probably asking is how this is even possible if there is an autism services mandate in Maryland.  It’s tricky.  Here is a link to some information from pathfinders for autism, which is a great organization that literally helps you find your way through this ridiculous system.

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

Crucial information for parents:

“Maryland lawmakers approved a Bill in 2012 requiring that coverage for autism treatment be clarified by regulators under Maryland's existing Habilitative Services Mandate. The regulation was finalized in March 2014. Only insurance plans regulated by Maryland law are subject to the Maryland Habilitative Services Mandate.”

Read that again- only insurance plans regulated by Maryland law. 

Plans Covered
• Individual Plans purchased in Maryland
• Fully Funded Plans purchased in Maryland
• Plans purchased on the Maryland Health Benefits Exchange (ACA/Obamacare)
• The MD State Employee Health Plan - currently complies with the Habilitative Service Mandate
Plans Not Covered
• Federal Employee Health Plans
• Medicaid
• Military Health Plans
• Employer Self-funded (Self Insured) Plans

They even have a link where you can answer a bunch of questions to try and determine if your child will have coverage.  So here’s the thing- my husband works for a LOCAL government, so we should have been fine right??? WRONG!  When I went back and looked at the paperwork, I saw that this insurance plan was purchased through something called an LGIT or local government insurance trust.  And guess what, because they formed this trust, and purchased the plan from them and not "locally", the plans are considered “self-funded”, and the regulations do not apply.  That does not mean they cannot provide the services, it just means that they aren’t obligated by law.  Military health plans, for instance, have some of the best ABA benefits money can buy (and for what the military is paid, they SHOULD).  But take the self-funded thing, add it to the autism exclusion clause, and you have a recipe for disaster.  And one hysterical mama!

How can I explain how my day went down last Friday?  Well first, I took a half day from work because Nate had an IV infusion (not covered by insurance, ha) first thing in the morning.  Which was the smoothest part of our day.  I dropped him off at Cisco Center after this, where he would catch the bus to school (he has had this infusion multiple times and never has a problem) and headed home to log into work  where I found the happy email telling me that ABA would be excluded from this policy and offering suggestions of possible grant sources (which if you follow me, you know I have exhausted for other services).  Cue the hyperventilation.  I called the HR representative- I was kind as could be- but I am not going to lie, I was sobbing the entire time.  About 30 seconds into the conversation I was 100% convinced that my husband’s company truly had no idea that these services would be excluded.  They know the boys are on the spectrum, and this is a small (think 35 people) organization.  This was not done purposefully; they had tried to mirror the benefits they had with the previous company.  In my opinion, this trust seems to offer these small organizations insurance plans, promising huge savings, and ample benefits, while leaving these services, that not a ton of people need, out to save themselves some money.  And while not a lot of people may need the services, the ones who do REALLY need them.  The trust is who picks and chooses the benefits they want the insurance company to administer- so it wouldn’t matter how many times we appealed the denial of these services, if the insurance company wasn’t instructed to provide these benefits, they couldn’t.  I had to explain this to my husband who had the same instinct as most of us, which was to scream “Cigna sucks!!!”  Nope, they provide ABA beautifully when the trust says, include this benefit.  It’s not their choice. 

So about 10 minutes after I got off the call with HR, I decided to put my head down for about 5 minutes to try and calm myself down.  As in, I set my phone alarm for 5 minutes and did some deep breathing.  When I opened my eyes, I had missed TWO calls from Jack’s school.  I called back and the health room assistant informed me that Jack had two hives on his arm, and did I want to come get him?  Ummm, how about some calamine lotion instead??  Sigh.  So I focused on work, started getting a little bit done, it’s about, hmmm, 1:30 by now.  And the phone rings.  It’s Nate’s school.  He fell asleep on the bus and is completely out- could I please come get him?  REALLY??????  I was honestly looking around for a hidden camera at this point.

On my walk into the school, I got a call from the HR rep.  And just as simple as that she said I want you to know that we are having the language in the policy changed- these benefits will be covered for your boys.  I am not the least bit ashamed to say that I burst into tears and literally told her that  I loved her and was going to send her flowers.  Not the least bit.  This woman made a few phone calls and prevented all of my children’s progress from going down the toilet.  She is my hero.  I picked up Nate, sobbed on the teacher’s shoulder for a minute, took Nate home (where he slept another 3 hours) and tried to finish work between hiccups. 

The morals of this story?

  1- Be obnoxious to your husband if he is the insurance policy holder.  Ask him a million questions and make him paranoid.  Why?  Not because you don’t trust him, but because it works!  The fact that John looked at the benefits summary so thoroughly, spotted the clause and knew enough to point it out, saved our boys' services.  Because finding the problem during open enrollment?  It’s fixable.  Now, we have the extreme luck of being in a small organization- had it been my husband’s previous job he would have been one of 6000 and we just would not have mattered that much.  But this employer also wasn’t offering benefits through a trust either, and would have had to comply with the mandate.  Bottom line is that had John not had the wherewithal to point this out to me, if we had missed this, the problem would have been much, much harder to fix.  husband=hero.

2- If you have questions or concerns about coverage, take them directly to your current care provider- at the end of the day, they want to keep you as clients, paying clients.  And they will give you a straight answer.  The ABA company also is a hero in this situation because my concerns were confirmed and made me more confident in speaking up.

3- Don’t blame the insurance company (not all the time anyway- I am still pissed that I have to take one of my meds twice a day because they won’t pay for extended release) - they are administering the benefits they are instructed and paid to administer.  The decisions are often made by your employer, or a trust, or the government.  The insurance company is the messenger in many of these cases

4- Don’t mess with this autism mama!!!!  I mean business!  And I am getting smarter and savvier everyday- so there!

At Least They're Healthy?

My husband and I often sit and have this conversation.  At least the boys are healthy.  And then we look at each other. Well, they are aren’t they?  We, as a community, are discovering more and more that autism is caused, or at least exacerbated/triggered by other physical issues, issues that need to be addressed, so I guess in that way, no they are not healthy.  But autism is not life threatening.  And that is what we are focused on when we have these conversations. 

Something I feel compelled to share is just how well aware I am of how much worse it could be.  My job reminds me of this daily.  I am a transplant coordinator for an insurance company- and yes I know this may sound kind of hands off, but I assure you, it is not.  I work with Medicaid patients, many of whom are pediatric, even infants, and I form strong bonds with their parents.  I work hard to make sure these little guys have what they need, authorization to get to and from their appointments, to receive their lab work, their scans, their transplants, their follow up care, their medications, equipment, you get the idea.  That is the technical part.  On the other side of that is the part where the moms recognize my voice the minute they pick up the phone and start talking, or crying, so fast that I can barely get a word in edgewise.  The part where the parents are looking for, or begging really for reassurance that their little ones will be ok.  Or in contrast, parents who are dealing with the stress through anger and yell at me, telling me I have no idea what it is like to have a child with challenges.  The blessing in all of this for me is that I am on the phone, not in person.  The phone gives me the distance I need to do what I need to do;   to explain the difficult things sometimes- that they will need to wait, or move their child to a different facility, or change medications.  In the end, these children get what they need- they are ill, there is an established treatment for their conditions and once medical necessity is shown, the insurance pays for it.  If it is an experimental treatment it can be a bit more complex, but often the study will actually pay for it, and if not, the insurance does at times cover it. 

And I understand that these are life threatening conditions.  Ok, I get that.  I go through the medical histories, the lab values, the scans, all of it on a daily basis and make medical determinations based on my clinical judgment.  Here is what irks me- this is not even an option for ANY of the medical treatments available for my children for their autism.  How can this even begin to be appropriate?  HOW? 

I believe with all my heart and also with my brain (which, not to brag, but it’s pretty good) that future generations will look back on this period of history with shame.  Well, for many reasons, but particularly when it comes to the autism epidemic and the lack of action taken to help those affected.   Treating autism as a purely psychological condition is not going to just sweep it under the rug and make it disappear.  The numbers keep growing, and it is not being addressed, not by a long shot.  Google autism definition

1.    au·tism/ˈôˌtizəm/

noun 1.    a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Now, I was happy to see at least habilitative services become mandated in our state this year- ie OT, PT, speech, and supposedly ABA.  HOWEVER, because ABA has not been covered by insurance ever in the past guess what??  There is no licensure for ABA’s in our state.  So even though in theory, ABA done by licensed certified therapists is covered, there are no licensed therapists, therefore, none of the kids can actually have it.  Clever, huh? 

Currently, Board Certified Behavior Analysts (BCBA) are not licensed in the state of Maryland (they are certified nationally). However, a licensure Bill for BCBA’s was passed by the Maryland General Assembly during the 2014 session. It is expected that the state will begin issuing licenses to BCBA’s beginning in 2015.

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

see?  Isn’t that nice of them?  Baby steps. 

Anyway, let’s step even beyond that.  Into the space where autism is being acknowledged as a medical disorder.  You know the space where most autism parents live.  Only now are the mainstream treatments listed above being covered by insurance, and let me assure you, that alone is still a battle- when we finally got the boys’ insurance company to acknowledge that they needed to pay under the heading of habilitative services we both almost cried- it took months.  Even the oral medications that are mainstream medications (used off label for studies) we have tried have been covered by the studies we participated in- we had to pay for Jack’s medication out of pocket when we continued it temporarily after the study ended.  Other interventions that are being used in autism- they are considered experimental for sure, but can’t that be said for many oncology therapies?  So to list a few, mitochondrial cocktails, vitamin B-12 shots (well, we got these covered with a nice small $70 copay), hyperbaric oxygen treatments, IVIG, chelation, supplementation, special diets, glutathione, colostrum, you get the idea.  And what about the homeopathic treatments I have been using with the boys since April- we have seen MARKED improvement in Nate, no question, but the costs are killing us.  These are the “options” given to autism parents.  Other than of course symptom control, such as anti-psychotics, antidepressants, anti-seizure medications, etc.  Those are covered by insurance.  To me, it just seems like it would make more sense to treat the problem at its source than to run around putting out fires (symptoms) all over the place.  But parents are limited in what they can do by their finances.  Parents are asked about their finances before they are presented with treatment options.  There is no insurance coverage for any of it, so if you can’t pay, well, you’re screwed. 

So though it may be so that my children are “healthy” in so much as they do not have a life threatening illness, they do both have a condition that severely impacts their quality of life.  It does affect their physical health.  And unlike any other condition out there, medical necessity is not something that can be proven as of yet, because a cause has not been identified, and medical treatment has not been acknowledged as legitimate. 

Once again I ask, how can we limit treatments for a disorder when we cannot prove what is causing it?  How can we call a disorder “mental” when associated symptoms include GI disturbances, immune dysfunction, eczema, food allergies, and seizures to name just a few? 

Fighting the Good Fight for Our Kiddos- The Battle for Habilitative Services Continues

If you have been reading my blog for a while, you will remember how excited I was last fall when I found out that my sons’ OT and speech could be covered by the habilitative services benefit our insurance plan offers, something that was enacted last May. 

http://www.jackandnatesmom.blogspot.com/2013/10/habilitative-services-in-maryland-for.html

Since that time I have been on the phone with CIGNA approximately 8 times, as they have continued to deny my sons’ claims, starting in October when we first billed under autism and habilitative services, all the way through two weeks ago.  Just so that you know I am not crazy (in this regard, ha), here is the documentation, first the “update bulletin” put out last year, and then the exact wording from the open enrollment booklet for this year:

This document printed in May, 2013 takes the place of any documents previously issued to you which described your benefits

BENEFIT HIGHLIGHTS	IN-NETWORK
Habilitative Services for Children Under Age 19 (Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy) Calendar Year Maximum: Unlimited	100% after the $15 PCP or $15 Specialist per office visit copay

Cigna: Open Access Plus In-Network Coverage Period: 01/01/2014 –

12/31/2014

Summary of Benefits and Coverage: What this Plan Covers & What it Costs Coverage for: Individual Plan Type Open Accessst Ifr

Limitations & Exceptions

Home health care No charge, after deductible Limit 16 hours

Rehabilitation services $15 co-pay/

Coverage for Rehabilitation, including Cardiac

Rehabilitation, service is limited to 60 days

annual max

Habilitation services $15 co-pay/

Covered for children under age 19 (Including

physical, speech and occupational therapy,

autism, autism spectrum disorder and cerebral

palsy)

Skilled nursing care No charge, after deductible Coverage is limited to 100 days annual max

So of course I called them, right?  First I was told that habilitative services were not covered AT ALL.  I faxed them the documentation, and they said, how about that.  Then when the claims were still denied, they said they did not have an appropriate “code” to bill under.  When the open enrollment bulletin came out, showing everyone that this benefit is offered I suggested nicely that they get on the stick since soon I would not be the only one who seemed to be aware of the benefit.  Did they?  Nope.  Then they said that this service was not covered for autism.  Ummm, see above.

But I thought surely, definitely now that we are in 2014, after this was in the open enrollment bulletin, it would no longer be an issue.  Logical reasoning would bring you to think that this would become a no-brainer when it has been printed for an entire segment of local government to see and enroll for.  But, alas, I forgot that this is not meant to be logical.  So the denials have continued.  We are lucky to be with an OT practice that is kind of in the fight with us, and understands that I am doing this for the greater good.  Because right now, we are at the beginning of a calendar year, and if I wanted to make my life easier, at least temporarily, we could go back to billing as rehabilitative services for the next 60 visits.  But I refuse to do this.  I want the company to do it right.  And even more importantly, I want these services, which are so needed and deserved, to be provided for our kiddos with autism.  I want validation that these services are not “rehabilitating” anything- they are working on life skills, they are habilitative.  So being the glutton for punishment that I am, I called Cigna again today. 

And I think it happened.  I think I got the “magical” person- you know the one- the representative who is there to really do their job and who actually cares that you get what you need?  She pasted notes all over the boys’ records (in the computer) with details of the habilitative benefit and confirmation that it exists and resent the claims for payment.  Even more- she gave me a confirmation number.  So I can call back and say “yes huh, she did too say it would be fixed and I have numerical proof!!!”  Am I confident that this is it?  That there will be no other hurdles in this regard?  Not at all.  But I do feel like we took a big step in the right direction.  We, as parents to these amazing kiddos, have to fight to make sure that these benefits continue.  We can’t make that happen unless we use them.  And if we have to fight to use them right now, well then, so be it. 

Habilitative Services In Maryland for Kids with Autism- A Must Read!!!!

Wow.  Seriously for a while today that was all I could say. 

My project for the next few weeks is to figure out our insurance for next year.  I have been considering enrolling the boys in dual coverage (both the insurance from my work and the insurance from John’s) in order to have more allowed services, but mainly to have more therapy sessions.  Right now, as I have mentioned in the past, the rehab services dictate that each individual is limited to 60 visits for OT/PT/speech combined, which is woefully inadequate for both of them but for particularly for Nate who is in desperate need of speech therapy.

John’s work sends out a written bulletin detailing the medical plan options.  I was perusing the choices and immediately focused on the rehab benefits.  The most expensive plan offered 100 visits total which would not allow Nate to have both speech and OT once a week for the year- was getting pretty upset about this because my insurance premiums and deductibles are much much higher than John’s (and yes I work for a health insurance company).  Then I noticed something new.  Maybe I’m nuts, but never before have I seen a column for “habilitative services”  under the column for rehabilitation services. 

Here is the definition of habilitative services:

“Habilitation Services - Health care services that help a person keep, learn or improve skills and functioning for daily living. Examples include therapy for a child who isn’t walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology and other services for people with disabilities in a variety of inpatient and/or outpatient settings.”

Here is what that column said:

Habilitative Services for Children Under Age 19

(Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy)

Calendar Year Maximum:

Unlimited

This benefit language is enough to make an autism mom’s heart start pounding.  What IS this?????  I want it!!!!  I emailed John right away and asked him to talk to his HR department.  But I wasn’t hearing back soon enough, so I googled my husband’s work, insurance, and habilitative services.  And that’s when I saw it.

An update to our current policy for 2013.  An update stating that effective May 1^st, 2013 habilitative services are covered for the above diagnoses with an unlimited calendar year maximum.  And the policy was made retroactive to January 1^st, 2013.  Basically this is saying that my kids can have two OT visits a week if they need them AND speech therapy every week.  Obviously I snorted something this morning and forgot about it.  So I called Cigna and read this to a member services representative, who stated that she did not see this under our benefits.  Sigh, maybe I was reading it wrong.  Damn it- I really liked lala land.  And then, the manager comes on the phone and asks ME if I can fax HER a copy of this policy.  Hell to the yes!!!  So I did.  I haven’t heard back from her yet. 

But I did hear back from John- the HR rep was not aware of this policy change either- but she looked it up and…..it’s true!!!!  I called the boys’ OT right away to let her know- she wanted to see the document too- she said they had only ever had one other client who had a habilitative services benefit and they had to submit a special application, yada yada.  So I emailed it to her.  She instructed me to get letters for the boys from their pediatrician stating that they have been diagnosed with autism spectrum disorder, so that they can bill under this service from now on.  Did you hear that???  The insurance company is going to cover something BECAUSE my kids have autism.  We don’t have to say “developmental delay” anymore.  So I called for the letters…and now, we should be all set.

But I was curious.  Why this wonderful, amazing, life changing shift???  So I did some research and found out the why.

http://www.autismspeaks.org/advocacy/advocacy-news/autism-speaks-weighs-maryland-insurance-reform-plan

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

Autism Insurance in Maryland

Maryland has a Habilitative Services mandate. Habilitative Services include, but are not limited to, Physical Therapy, Occupational Therapy, and Speech for the treatment of a child with a congenital or genetic birth defect (including Autism Spectrum Disorder).  When the mandate was written in the late 1990s, it was the intent that services, such as Applied Behavior Analysis (ABA), would be covered by the language …but not limited to…that was included in the law. In practice, this has not been the case. Legislation was passed by the General Assembly in 2012 to clarify what services are covered and to address service access issues with the mandate. The legislation called for the creation of two workgroups: an Autism Technical Advisory Group (ATAG) and the Habilitative Services Workgroup (HSW).

The ATAG was composed of individuals with expertise in the treatment of Autism Spectrum Disorders (ASD) and was charged with determining the medically necessary and appropriate use of habilitative services for the treatment of Autism. The ATAG submitted their recommendations in April 2013. The recommendations are now entering the regulatory process with the HOPE that come November 1, 2013, ABA will be covered under the mandate. Read ATAG recommendations.

The HSW is charged with determining: if children who are entitled to habilitative services are receiving these benefits; if those children are not receiving the services, the reasons why; ways to promote optimum use of these services; and the costs and benefits associated with expanding habilitative services coverage to individuals under the age of 26 years. Their work is still underway. Read HSW Interim report. 

Only plans subject to Maryland Law are subject to the Maryland Habilitative Services mandate. About one third of Maryland residents’ health plans are regulated by Maryland law. However, residents covered by plans sold in other states or self-funded plans may offer coverage for Habilitative Services and/or Autism treatment.
Habilitative Services information from the Maryland Insurance Administration

So the regulation has been there it appears- but now it’s being enforced.  And God willing expanded upon come November 1^st! 

http://www.mdinsurance.state.md.us/sa/docs/documents/news-center/legislative-information/042513_atag_recommendations_final.pdf

I wanted to make sure I posted about this and quickly.  Because it’s open enrollment season.  Because everyone in Maryland who is effected by autism needs to ask this question before enrolling in a new plan or even staying with the same one.  This benefit was never an option for us in the past and suddenly my husband’s employer is providing it with all of the health plans they offer.  It can happen to you too!  Do a little research!  What awesome news!!!