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.

Autism and Money: How Do We Pay For All Of This? (4)

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)

FAQs

How do autistic people manage money? ›

Tips for handling and exchanging money

Keep four (4) quarters in your pocket at all times. Keep paper currency in a wallet/purse OR use a money clip. If using a debit card, do not share the pin number with anyone. Minimize the spending limit on a credit card.

How do people with autism get paid? ›

Supplemental Security Income (SSI)

Supplemental Security Income, or SSI, is a monthly government payment through Social Security which is designed to support people who are aged (65 and older), blind, or disabled. Individuals with autism may be eligible to receive SSI to help support them financially.

What are the financial costs of autism? ›

A study conducted in 2020 found that “the average per capita cost of ASD (Autism Spectrum Disorder) is $3,566,881” (The lifetime social cost of autism: 1990-2029).

How much money does the government give you for an autistic child? ›

The amount of payment for personal care and domestic services is calculated based on the number of hours of care needed and the hourly wage rate established by the state. As of 2021, the hourly wage rate for IHSS providers in California is $15.00 per hour.

Can autistic people be financially independent? ›

Programs that teach independence - Programs, such as summer camps and residential programs, can help young people with autism develop independence. According to Psychology Today, parents should seek out programs that teach children life skills such as financial literacy.

What do autistic people need the most? ›

Although this can sometimes feel challenging, it is important to recognize three very simple factors that every person with ASD needs: safety, acceptance and a sense of competence.

Can you get money from the government for having autism? ›

Autism can qualify you for disability benefits, assuming your condition prevents you from holding a job. Categorized by the Social Security Administration (SSA) as a mental disorder, autism is a qualifying condition if it meets certain medical requirements from the SSA.

Where do most autistic adults live? ›

Many adults with autism live at home or with a friend or family member. When additional support is needed, in-home services may include a companion, homemaking/housekeeping, therapy and other health services, or personal care.

Is autism considered a disability on taxes? ›

No specific medical diagnosis constitutes disabled to tax purposes. A child's disability doesn't affect tax filing until he turns 19 (24 if a full time student). Then his disability allows him to continue to be considered a "Qualifying Child" for tax purposes regardless of age.

Why is autism care so expensive? ›

The therapy is intensive and conducted several times a week, sometimes even every day, in as many as 40 hours a week. Because of the intense, one-on-one nature of the therapy, ABA is expensive— costing as much as $60,000 a year.

Is autism covered by insurance? ›

In fact, most insurance plans will cover autism therapy, including ABA therapy and autism evaluations. Coverage varies based on your location and plan, so it's important you check with your provider.

What is the high cost of autism? ›

In the first scenario, the lifetime social cost of autism for individuals born from 1990 to 2029 reached $11.5 trillion. In the second, the lifetime social cost with continuing increases approached $15 trillion (Cakir et al., 2020).

Is level 1 autism a disability? ›

Is Autism Level 1 a Disability? Yes. The Level 1 classification of ASD brings its own set of challenges, especially in social communication and behavior. People with Level 1 autism often need different kinds of support and help to deal with these challenges.

What is a child with autism entitled to? ›

Disability Living Allowance (DLA): This is a key benefit for children under 16 living with disability, including autism. It is assessed according to care needs, and a diagnosis is not required to make a claim.

Do autistic kids get a government check? ›

The question here is: “Can I get SSI for my autistic child?” And the answer is yes. Autism qualifies as a disability that can be eligible for benefits, given that specific criteria are met. The SSA's Blue Book outlines the necessary conditions children with ASD must meet to qualify for benefits.

Do autistic people struggle with managing money? ›

Autistic people often find managing their financial affairs overwhelming. As a parent or carer, it can be helpful to teach your autistic child about money from a young age.

How does autism affect the family financially? ›

Families have exceptionally high out-of-pocket spending for their children with autism – more than one-third of families that had any out-of-pocket expenses spent more than 3% of their total household income for their child's health care costs, above and beyond co-pays, co-insurance and deductibles.

What does Autism Speaks do with the money? ›

We pride ourselves on the fact that eighty-six cents of every dollar donated to Autism Speaks goes directly to research, advocacy, programs and services.

Are autistic people generous? ›

We found that compared to a group of non-autistic participants, autistic adults shared more money overall and this was driven by greater generosity to strangers.

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