Our ABA Nightmare

When the pediatric psychologist first diagnosed Jacob with Level 2- Autism, the experiences attached to my 11 years in education suddenly flooded me.

What does Level 2-Autism even mean?

I needed someone to translate that to educational jargon — is this a SPED case or could he survive on a 504? Are we talking self-contained classroom or mainstream gen-ed? Were we going to have to sit in ARD meetings and plead our case for an ESY referral or could we plan on family summer vacations and summer camp as part of his typical programming.

The reality is that no one could tell me.

What I did expect as part of the diagnosis was the recommendation to begin therapies as soon as we could. Although we were highly interested in biomedical feedback as part of our treatment plan, we didn’t want to abandon traditional approaches. It wasn’t a “this or that” mentality, instead it was about doing as much as possible as early as possible. So while we were making doctors appointments and travel arrangements to Florida, we were also asking for referrals to local ABA therapy centers, and finding recommendations on speech and occupational therapists.

Applied Behavior Analysis. ABA therapy in many ways is considered to be the most important of the three therapies recommended to us.

We were able to get Jacob into the ABA center of our choice. The 9-month wait list turned into a much shorter wait and by mid-February he was ready to start. I shared this picture on Facebook:

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While the medical professionals agreed that he would need approximately 20-25 hours a week, we decided to ease him in. Luckily for us, Juan’s mom agreed to drive Jacob to and from ABA as needed so we had the option of starting him off at two hours a day, five days a week. Up until this point, Jacob had been staying at home with grandma while the rest of us were at work and school. We figured that jumping from zero hours of structure to 20 hours of structure wasn’t necessarily the best idea, and the ABA center agreed.

We felt like we did our diligence. We toured several places before deciding on “the one”. We read the paperwork. We signed the paperwork. We submitted our insurance documentation. We called THREE times to make sure our insurance coverage included ABA therapy. The ABA center also called to verify services.

Each time we were told: Yes, those codes are covered. 

When we asked for written approval that the codes submitted for insurance purposes would be covered, they would say: We don’t write predetermination letters for codes that are already covered. It’s covered. 

And we believed them. Why wouldn’t we? Juan’s insurance has always been easy and great to work with. While most other teachers rightfully complain and criticize the TRS-funded insurance plans they are stuck with, I have never had that misery. I’ve always been covered by my husband’s plan because anything seemed “better” than what teachers got. I wasn’t worried. Juan wasn’t worried. Looking back now, I suspect that the ABA center was a little worried. We got an email about a week into ABA therapy services that asked us to continue to reach out to the insurance company for written approval, reach out at least three times a week they wrote, until something is produced.

I read the email but didn’t act on it.

I’m sure it’s covered.

Juan’s company has amazing benefits.

Doesn’t she know I work at a school? There is no time during the day to do stuff like that.

February 21, 2019. Juan came home with Lucas from speech therapy. In the chaos that is 5-7 p.m. at our house, I didn’t really pay attention to Juan until I noticed it looked like he had been crying. It panicked me. But we wouldn’t talk about it until after the homework was finished, after the dinner had been eaten, after the baths had been taken and certainly not until the littles were asleep in their beds. Chaos doesn’t stop because of tears.

“The insurance isn’t going to cover ABA therapy,” he tells me. “I talked to someone today and they looked at something specific in my plan, and they confirmed with a supervisor on the floor that it’s not covered.”

“But we were told it’s covered. I don’t understand. What could possibly be different?” I say. I imagine that the reality had not yet set in. I was confused. I was angry. I was annoyed. I seemed to think that my husband was just wrong.

“I know. I know what you’re thinking because I was thinking the same thing,” he says. “Trust me, I’m angry too. I don’t know what we’re going to do.”

When my husband doesn’t know what to do, I immediately feel lost. He is our guide; our family leader. My marriage is completely dependent on Juan knowing what to do. That is how much I trust him. That is how much I depend on him. I remember when our friend Kristen showed us her Autism Binder: the place where she kept all of her child’s lab work, doctors assessments, business cards and brochures – I just cried. I was paralyzed. My immediate reaction was, there was no way I could do that. The amount of responsibility seemed too much for me to handle. But Juan sat right next to her, taking notes of what the binder included. He nodded right along as Kristen explained her process. I watched the two of them interact and immediately wondered if we should be sitting at a bar, so I could at least have a drink.

It was 8:00 p.m. on a Thursday night and what once seemed like a pretty good life, felt more like a nightmare. I texted my principal. There was no way I could go to work the next day and function like I needed to, unless I absolutely had to. She sent me her blessing, “Do what you need to do.” Juan and I both took the next day off to figure out our options.

There was still a part of me that believed the insurance company would cover the ABA therapy, when I woke up the next morning. I wouldn’t believe it until I heard it myself. I had made a list of things we would do that day. We weren’t going to work, but we were definitely going to be working. We listed things we needed to accomplish. Options if the insurance did fall through. We wanted to examine our budget again.

We settled down at Willowbend Mall after taking Jacob to ABA therapy ourselves. I imagined a scenario where we would pull out our laptops, get out my notebook and call the insurance company. I would be greeted with someone who would just confirm my original suspicion: my husband was wrong. Of course ABA services are covered, she would tell me, we’d laugh and then maybe I’d go shopping.

Reality: We settled down at Willowbend Mall after taking Jacob to ABA therapy ourselves. We pulled out our laptops, I got out my notebook and Juan called the insurance company. Marva, the insurance rep, would go on to inform us that ABA was not covered. We would reference each of the previous phone calls with the insurance company, but Marva’s story didn’t change. ABA is not covered. When we would ask to speak to a supervisor, she would tell us that no one was available. She apologized, but there was nothing she could do. I was mad at our situation, but I took it out on Marva. It’s not something I’m proud of. I raised my voice and demanded to know why the story was changing. I demanded that the previous phone calls be heard by a supervisor. I wanted to know why we were told yes at the beginning, then told no now. What happened?

You don’t get it, Marva. You don’t understand our frustration because it’s not your kid.

We still haven’t gotten a phone call back from our insurance provider about how this could have happened.

Our ABA center allowed us to opt out of our contract that specifically outlines a 4-week cancellation policy. We agreed to let Jacob finish another week of ABA therapy with hopes that something would happen. That’s the thing with hope: it’s always there. Even when we were told no, we hoped that the something would change and it would turn out alright. But nothing has changed.

The insurance company has denied the claims, so they will be our responsibility to pay.

In the process of what to do next, this is what we’ve learned:

  • There is a difference between self-funded insurance policies and fully-funded insurance policies. The biggest difference  is that self-funded plans are not regulated through the state. This means that my insurance plan is not subject to the state autism insurance law and does not have to comply with state-mandated regulations. Juan’s company describes their plan as self-funded.
  • According to Autism Speaks: Texas families receiving services through Medicaid or CHIPS currently do not have coverage of ABA services, either. The hopeful news is that the Texas Health and Human Services Commission has included the addition of this autism health benefit as Exceptional Item 45 in their proposed budget. Advocate for families dependent on state coverage HERE and learn more about the Texas Autism Society.
  • The Texas Autism Insurance Mandate does cover individually purchased health plans from the marketplace. However, you can only purchase insurance off the marketplace during open enrollment (Nov-Dec), which doesn’t help us now but could serve as an option later. Interested in know more, CLICK HERE.

We put in a phone call to Juan’s company and he has a meeting with HR to discuss the lack of ABA coverage. We’ve partnered with Autism Speaks and have received The Self-Funded Employers Tool Kit to present to them to make a case for adding it, including a list of other companies who have come around in making sure it’s a benefit for all employees, even though they too offer self-funded insurance policies. Interested in those companies? SEE HERE.

So what are we doing now?

We have contacted Juan’s company and will petition that they cover the expenses. This is pending. They have asked for us to send them the claim denials.

I have contacted my school district’s insurance representative who has told me that ABA is covered through Aetna TRS – Active Care, but until I see it in writing. I don’t believe it. This possibly gives us an option to start ABA therapy again in the fall.

We have asked for speech services through ECI to increase. This is pending, but likely.

Jacob has an occupational therapy assessment at TOP Pediatric Therapy on Thursday. The recommendation came in from a friend and we are excited to pursue this.

There is a developmental pre-school, Pediatrics Plus, in Frisco we are also interested in touring and getting more information about. They offer ABA, Speech and OT services during the day. This could possibly serve as an option in the fall, if coverage is there.

Juan and I were devastated to learn that ABA would currently not be part of Jacob’s treatment plan. The out of pocket expenses, at the amount of time they recommended would be needed, was too much for us to comfortably handle. We went back and forth and our friend Kristen kept texting me that “we would figure something out.” As if she didn’t have enough on her plate, she made our problem her problem. I took several phone calls from Kristen that weekend. And it wasn’t just Kristen reaching out, I had several friends and family members text and call us. They wanted to know if they could help. They made themselves available if we needed to vent or talk over dinner.

At the end of our ABA nightmare, we arrived at this conclusion: If we believe that the biomedical feedback is truly the “key” in our treatment plan, then we would see progress with or without ABA therapy. Had we seen progress in Jacob’s behavior? Yes. Do we think it was a result of 9 days of ABA therapy? Not really. Do we believe in ABA therapy? Yes. But did we believe it in enough to put our family in an uncomfortable position financially? No.

Our hope is to reintroduce ABA as soon we can. Maybe that “good-for-nothing” teacher insurance, will serve us well. I’m praying. And that list of companies who offer ABA coverage even though they also have self-funded insurance policies for their employees, just maybe they’ll receive a resume with my husband’s name on it. It wouldn’t hurt to try.

Signed with love, Kat.

 

 

 

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