Go to the mattresses

If you’re not a “You’ve Got Mail” fan (I’m sorry and you should be!), then you’re likely confused with the title. Take a second and watch this:

https://www.youtube.com/watch?v=XHTj2tecNbU

First, I want to be clear on something: NoThis was not created to debate ANY topics (this includes ABA, autism caused by vaccines, special diets, “cures” for autism, CBD use, etc). This is simply our story and what work(s) for Jude. If you have questions as to why this is, please refer to my 1^st post where I laid out my 3 goals for the blog. I am happy to respond to comments privately for those seeking more information (which many have, so thank you!) but I will not debate or argue any of the aforementioned topics on here. There is a saying, “if you’ve met one child with autism, you’ve met… one child with autism.” Meaning—literally every sing child is different, so there is NO “works for everyone” approach with this field. It’s one of the things that makes it so challenging. What worked for us and Jude, likely won’t for another, so I chose to not spend my time arguing these points.

TIP: if you’re not a SN mom, I would really recommend that you steer clear of these topics, all together, with your friends. “Advice” and “observations” aren’t generally helpful and truly it would be impossible for you to even understand this world, if you weren’t living in it daily. You may think you’re being helpful with suggesting gluten-free diets, essential oils to calm them down, or discipline tips, but it’s likely not going to be taken that way. Unless you are a developmental pediatrician, I would just not go there. Ok, the end on that!

From November 2017-March 2018 I had one goal: GET JUDE THERAPY. I didn’t really know the difference between OT, Speech, ABA, etc, but I was going to learn. I started reading books. Lots of books. I started joining facebook groups and reading blogs. I started talking to other parents in these groups and most of the feedback was pointing to one thing: ABA.

ABA stands for Applied Behavioral Analysis. ABA therapy is a method of therapy used to improve or change specific (bad/destructive) behaviors. In simple terms, ABA changes the environment in order to change the behavior. Its a two-prong approach of positive reinforcement and understanding behaviors (remember the ABC data from the Montessori School?) so that you can understand what is causing the meltdown, aggression or destruction. The goal is to increase behaviors that are helpful and decrease behaviors that are harmful or negatively affecting learning and functioning in life. Bottom line: its SUPER difficult, specifically in the beginning.

I started to look for ABA therapists in November (while working a full time job). Naively, this was my pattern for about 4 weeks straight:

Google “ABA therapy Charleston”. I would go to their website and whichever one looked the most awesome I would call them.

Dead End. They don’t take insurance.

Google “ABA therapy Charleston”, next coolest website…

Dead End. They have an 8-10 month waiting list, but fill out the intake paperwork to be placed on the list

Google “ABA therapy Charleston”, third coolest website…

Dead End. (fill out their ridiculously long packet, then they call me to tell me they aren’t taking anyone in our area).

Google “ABA therapy Charleston”, ok… the 4^th place website.

Dead End. They don’t take insurance.

Google “ABA therapy Charleston”. Ok, their website isn’t totally awful.

Dead End. They’re closed permanently.

Google “ABA therapy Charleston”. Ok, their website needs some work.

Dead End. Left 3 messages, they don’t respond, now their inbox is full.

Google “ABA therapy Charleston”… ok, their website looks like Jude designed it…

Dead End. They don’t take insurance AND their wait list is so long, they’re not adding to it.

I started to realize that if I wanted to help Jude with ABA, we were going to either have to pay for it out of pocket, or I was going to have to start doing some serious bribery to get us moved up on the lists (which btw, never happened). I filled out over a dozen intake packets in January alone, just to be wait-listed. These are not light intake forms; some were 10-20 pages, involving sections with long essay questions and exhaustive checklists about your child. They required you to select a schedule (either morning or evening) and which days, how many hours and other details-which I had NO IDEA about yet.

I finally found our provider after about 8 weeks of the hamster wheel. They DID take insurance and the BCBA was located just 10 mins from our house. I was so excited (I know better now!).

The provider’s billing department called me to inform me that ABA was not covered in our plan. I was SHOCKED. I didn’t understand. I thought if you had a script from your doctor with the medical necessity note and a diagnosis, that you were good to go. I couldn’t have been more wrong. We went ahead and started the therapy as they graciously agreed to move forward while I fought the fight (they also started the process to go in-network with Aetna, but that’s not fast).

I put on my best “I’m the customer!” voice and called Aetna. Nearly 2 hours later I was finally to the person I needed and she was reading me specific diagnosis codes. WHAT.IS.THIS?! My head was spinning. This is SO not my thing! I would write down the date and the name of the person I spoke to for weeks… filing appeals and the paperwork for single-case exemptions.

It was NON-STOP. Trying to balance work, and Jude and this had become a full-time job on its own. I was going through stacks of sticky notes with random things written on them which I posted all over my walls and marker board. By the end of February my office looked like a serial killer and a unicorn lived there. The neon green and pink notes wallpapered my office like a sad tribute to my losing battle, and more to a horrifically broken system and one designed (I believe) to frustrate families so much, they give up. WELL…NOT THIS GIRL.

My first appeal, netted a decision of covering ABA for Jude at 60/40 but it would be with their single in-network provider in our area. I already knew this provider—they are notorious in Charleston and I was NOT going to use them for Jude.

I pushed harder. My second appeal was denied. I’m sure Aetna thought that with that denial, they would never have to hear from me again. FALSE.

My third appeal, for my single case exemption was denied. And they restated that they would cover the services at this one particular provider at 80/20. Not good enough.

At this point, you’re probably wondering, why don’t you just go with the other provider? Seems like you’re spinning your wheels. Well, yeah I am. But just wait…

I spoke to many other parents that warned of using that provider. “Outdated methods, high turnover, unreliable, ineffective” were just some of the comments from these parents. It continued: “My child literally regressed under them… they could never fill the # of hours he was prescribed… can’t keep any good therapists…improperly billed repeatedly… do not trust them… there’s a reason they have no wait list…”

I interviewed 2 dozen parents with feedback just like the above, and typed it up into a report, preparing to submit it to Aetna… and then DING. I got what I needed. The provider was being federally and state-wide investigated for Medicaid fraud and sub par standards of business. I was like Fräulein Maria spinning on a mountain top with this news—this is what I needed–I was going to get my approval!

April 4, 2018

I came home from the gym and grabbed the mail on my way upstairs. I saw the, all too familiar, Aetna envelope in the stack and I tore it open like a badger.

The red letters stared back at me: D-E-N-I-E-D.

Remember the rage from the speech bill? That was nothing. I was so angry I started crying. Those that know me, know I’m not a crier, so this was extreme. I had worked so hard on that appeal and it took weeks and still nothing. The letter stated that nothing I submitted could be used for the appeal as it was at this point, not proven.

And they ended with this: “this case is no longer subject to appeals… xoxo, Aetna”

Mentally, I honestly thought they had won. I had nothing else to do, no more cards to play.

I received the first ABA bill in my email: $3,500 for that month’s therapy.

OUCH.

Don’t get me wrong—it was totally worth it, as we were already seeing some progress and if I had to, I’d spend 10x that to help Jude, but that was a hard pill to swallow.

That’s the day my eyes were opened to the total system failure. Ask yourself—could you afford an extra $3,500 a month in your budget? Where would you cut? What would you sell? Could you adjust to make an extra $3,500 happen? Do you take a second job?—no. You can’t, because your child’s therapy schedule is basically a full time job and legally you have to be there for them to bill the hours anyways. Does your spouse get a second job (leaving you to do all the therapy solo?). Do you borrow it? And if so—what about next month? Most kids are in ABA for years…

This is the dilemma of nearly every working parent with an exceptional child.

Do I keep working to pay for this life that is crushingly expensive, or quite my job, go on Medicaid so I can at least have care for my child that they desperately need? I will tell you that both options are hard.

In South Carolina the Medicaid reimbursement rate for therapists is EMBARRASSINGLY low (they could work at Target or Chick-fil-a for more!) so many providers don’t even except Medicaid anymore. In the whole state of SC there’s only 30 TOTAL! I used to foolishly think that these people on Medicaid, taking up all the services that I needed, were lazy or had it easy. I’m not saying there’s not abuse of the system—there is—but it’s still extremely hard to find good providers that take TEFRA, and most of these parents CAN’T work and balance the therapy schedule of their child. It’s the most frustrating dichotomy to chose between helping your child or going broke, which will negate helping your child. The system is really rigged as a lose-lose-lose. The taxpayers, the parents (and children) and the therapists ALL lose. (cue the ‘Meredith for Senate!’ banner unfurling)

Time for a tip: If your friend or family member is fighting with insurance right now, what they need most is TIME. Uninterrupted time to file paperwork, make copies, print records, place phone calls, etc. This is nearly impossible to do with their child at home. OFFER TO BABYSIT! Even if you’re uncomfortable with their child and don’t really understand how to care for them it’s ok (we know that!)
Just offer to come to the house for a few hours if you’re not able to take them outside of the home. I don’t know how many time I was sitting on hold with the appeals department, only to be forced to hang up with the sound of something shattering or Jude screaming in the next room. You can’t do anything with the insurance, but you can support her while she fights the fight.

Back to Aetna, as I climb down from my soap box.

April 10, 2018.

Savage: described as fierce, crushing, dreadful, dire and calamitous.

I decided that I had played nice for months, and jumped through their appeal hoops and it was time to get savage to help son. I was in my office one day when I got a notification that the SC legislature had officially discussed the case against provider X on the state floor and there was video footage. I decided I had nothing else to lose. I posted the following message on Aetna’s Facebook page:

It took exactly 47 minutes for the Aetna social media team to reply and exactly 2 days to get my approval. I envision that there’s a red bat-phone that rings in the behavioral health department at Aetna when I call. (and in the words of Jude: that’s better).

To other SN moms– I know it’s incredibly frustrating and exhausting fighting for coverage, but keep doing it! If they deny–keep appealing. If you run out of appeals–take to social media, or whatever you have to do. Its worth it. I know many would not agree with my approach with the use of Facebook, but desperate people do desperate things. I will not let my son slip through the cracks because some insurance executive, 10 states away, who’s never met him, decide his fate.

March-September of 2018 we did 28 hours of ABA therapy per week. 5 hours every single day and 3 hours on Sunday (our therapist came with us to church). I was so consumed with my fight to GET Jude the therapy and the coverage, that I never really stopped to consider what this was about to do to our home life, my work schedule, and in general how it would impact our family. ABA is brutal, especially in the beginning. Screaming, crying, hitting, kicking for hours, all the while, you know what he wants and can make it stop, but you can’t. You have to empty them of their destructive behaviors first, and then start to build positive ones in their place–and that’s incredibly challenging. In most cases, when ABA fails, its because the parents can’t take it and end treatment. It’s too hard. And I completely understand how those parents arrive at that choice.

Would you like to have a stranger (or anyone really) in your home for 25 hours every week? I doubt it. My life was like the worst version of Groundhog Day ever. I hate routine SO much, so for nearly all of 2018 I felt like I was in a prison in my own life. EVERY. SINGLE. DAY.

Get up early (my other hatred), get Jude off to PIC, cram as much work from my “actual job” as possible into 7:30-12:30p. Therapy from 1-6 p.m. Fall into bed exhausted. Repeat. Every week. For Months.

And just about the time, I’d drift off to sleep….