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
• 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!