Autism and Money: How Do We Pay For All Of This? (2024)

I posted this on the Not The Former Things Facebook page a few weeks ago.

Autism and Money: How Do We Pay For All Of This? (1)

“What does momma do when she is so tired she can no longer see straight? Work on all the insurance company appeals of course. Watch out Health Fund – you do not want to mess with me today.”

And I loved all the comments! Apparently, it’s not just me, and it’s not just my insurance company.

Autism and Money: How Do We Pay For All Of This? (2)

When we received my son’s autism diagnosis, I actually thought that having it would help us pay for treatment. I distinctly remember thinking, “At least now, we can see doctors and therapists without paying the total in cash. Thank goodness we have insurance.”

That lasted about a week.

Then, the reality hit. I tried to bill our insurance company for his occupational therapy – a treatment that was clearly identified and documented as necessary by his doctor.

Autism and Money: How Do We Pay For All Of This? (3)

At first, they asked us for more paperwork.

Then, they asked the OT for more paperwork.

Five months, and five more monthly bills later, we received a letter saying that they would not be paying for treatment. Why?

Reason Code 10: Developmental Disorders are not covered under both the Major Medical or Mental Health plans.

When I opened the letter, I thought it must be a mistake. I mean, this is health insurance. In my mind (at the time – I have since learned the reality) autism is obviously something that health insurance covers. I mean, it’s HEALTH insurance.

We thought it might be a mistake.

My husband called.

I called.

I tried to bill again under his anxiety diagnosis code instead of autism.

$6900.00 later, we have once again been denied.

“Reason Code 10” makes me crazy.

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Autism and Money: How Do We Pay For All Of This?

I have written before aboutwhat I wish someone had told me as my son underwent neurological testing. I left the money part out, on purpose.

Mostly because it shouldn’t matter as much as it does. I want to be able to just focus on exactly what my child needs to be more successful and feel more comfortable in this world.

Most of the time, I do.

And, the truth is I would add something else to that list. This is also what I wish someone would have told me –

You may not always be able to do all the things you know would help him. You will have to choose this treatment over that treatment, and this doctor over that doctor – even when you know the choice is not the best fit for your child’s needs – because you just can’t afford to pay for every single thing out-of-pocket.

It’s just reality.

A friend of ours, who also has a son with autism, put it this way –

Autism is really a rich person’s thing.”

It’s sad. It seems like it should not be the case. But, I am finding that as time goes on, and the bills pile up, it just might be true.

We are in the middle. We are fortunate enough to make a living that provides well for our family, including health insurance. We do not rely on public assistance, public health care, or state programs. But, we are also not in an income bracket that allows us to pay thousands and thousands of dollars out-of-pocket every year. We know families on either side of us – some covered by Medicaid, some paying for three different therapists in cash, every week.

This isn’t easy for anyone, no matter what their net worth. I don’t think we somehow are unusual. In fact, I am writing this because to seems to be an issue across the board, in all income brackets.

And so, for now, we do the best we can because what else can we do? We find the best possible treatments, within our stretched thin budget.

We spend hours keeping track of bills and insurance communication, writing, calling, faxing, in the hopes that somehow, we will be granted some financial relief.

And we try to remind ourselves that God has always, always provided. He has never left us without treatment for my son. He has provided in ways we never thought possible –

Extra jobs that we didn’t expect for my husband

Therapists willing to train me so that I can help my son at home

Wonderful church friends who have donated time and even money, to help our family

He has provided without fail.

The pile of bills can’t possibly compete.

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Autism and Money: How Do We Pay For All Of This? (2024)
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