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Day 113

Updated: Jun 26, 2019

Prior to the passage of the Affordable Care Act (ACA), autism coverage, if any was available, was determined by the state. ACA was notoriously rebranded as “Obamacare” by those opposed to it because the law was more popular than the president. Despite that, an unending campaign by insurance companies, and a botched rollout of, the law, as of this writing, still exists. The law mandated health insurance companies cover dozens of things they didn’t want to pay for like autism, cancer, mental health, substance abuse, pregnancy, preexisting conditions, etc. It also allowed coverage for kids on their parents’ insurance extending into their twenties and eliminated lifetime maxes. Because people on both sides of the aisle benefit from the law, the overwhelming majority of Americans were for it.

Years before the ACA passed, we were stuck with the state-mandated coverage for autism, called Applied Behavioral Analysis therapy (ABA). By enrolling Constance in her father’s employers’ and my employers’, we now had $81,000 or 26% of the ABA therapy covered. This required us to pay premiums, deductibles, and co-pays for two different plans.

At that time, we didn’t have the additional $231,000 in annual disposable income needed to provide Constance with ABA. Neither did most Americans; the annual household income was $50,054 that year.

There is a special kind of devastation that comes from not being able to provide your child with everything they need to be healthy. You are a failure at your most important job; taking care of your child. No parent should know it.

I was not going to let a stupid thing like money keep Constance from having her needs met. Speaking as a person who has been rejected by ATMs on three continents, I can tell you that I’m not afraid of not having money.

I developed a two-part plan to get Constance the rest of the ABA therapy she needed.

Part one was to come up with some cash quickly. The only asset we had was our house. Convincing Constance’s father to sell would be hard.

We saw hundreds of houses before we bought the one. Our realtor, David, had endured my refusing a house on the grounds that it was too big while Constance’s father simultaneously rejected it because it was too small. Once, he drove us out to a lovely house only for me to refuse it on the grounds that I found the neighbor’s political yard signs offensive.

To pitch him the idea of selling, I sat Constance’s father down and forced him to watch the documentary, “Recovered,” by the Center for Autism and Related Disorders. It shows how intensive, personalized ABA can help a child build neurological pathways to speech.

Recovered is a term some used to use for a person who had an ASD diagnosis and, through his or her hard work, luck, and significant therapy intervention, gained the skills to lose the ASD diagnosis. We no longer use this term because it is hurtful to those living on the ASD who feel their neuro-diversity is a characteristic of their life and not a thing they feel needs to be fixed. Appropriate language is one of the smaller challenges of putting so many divergent disorders under the heading of ASD.

After the documentary concluded, I dropped a bomb on Constance’s father. I told him we were going to have to sell the house to pay for the therapy Constance needed.

He was very upset. He said no.

I didn't want to tell the house either but I didn't think we'd make enough on his kidneys so there we were.

Then he conducted his own research into ABA for autism. He subsequently concurred. He pointed out that he would continue to travel for a living and so it was all on me. I was very aware of how alone, in everything, I was.

While I was going through all of this, I didn’t talk much about it. Telling people who weren’t medical needs parents what I was going through seemed to lead to people replying in ways that pissed me off. There was the bragger, who wanted me to know how much harder they had to work to help their kids. This is akin to the person who wants to show you how much larger their cesarean scar is than yours. Pass. There was the denier, who wanted to argue with me on the grounds that in such a great country as this there couldn’t possibly be such ridiculous hurdles to getting a child healthcare. These people tend to have so much privilege that the sight of them is nauseating. The surrender, who thinks I should not work so hard to get Constance the therapy. Instead they thought I should just accept that she wasn’t going to get what she needed. No one I told, who didn’t have a child with medical needs, made me glad I told them and so I tried not to talk about it. I was alone.

I cleaned and listed the house as quickly as I possible.

I was providing full-time care for Constance, taking Constance to and from preschool in Evanston, taking Constance to her therapy appointments, working full-time, keeping the house clean, and now leaving the home at a moments notice for realtors. Constance and I were hustling.

I will post part two of my strategy to get Constance the ABA therapy she needed tomorrow.

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Unknown member
Jul 06, 2018

Day 114 is at

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