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 1st. 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.
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!
