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 people with autism get money? ›

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.

Does the government give money to people with autism? ›

Autistic individuals in the United States may be eligible for government funding and benefits. Federal and state level resources can provide financial assistance, access to healthcare, and support services. Navigating the various programs and requirements can be complex.

How do autistic people handle money? ›

Although each case is unique, many people with autism tend to spend money on things they want, like video games, movies, or anything else that they enjoy collecting. If they are comfortable, they may also spend a lot of money eating out, leaving little money for important things, like rent and bills.

What are the financial costs of autism? ›

Highlights. Autism Spectrum Disorder (ASD) was associated with considerable financial costs for individuals, their families, and society. The incremental lifetime cost was estimated for individuals with and without ID, at $2.65 million and $4.61 million respectively. The annual national cost of ASD was $41.8 billion.

How to get paid to stay home with your child with autism? ›

Yes, in California, you may be eligible to receive In-Home Supportive Services (IHSS), which provides financial aid for the long-term care of your autistic loved one. You must meet specific requirements for eligibility, and the money from IHSS is designed to help with expenses related to the individual with autism.

Does Social Security pay for autism? ›

To help offset some of these costs, many families turn to public benefits. Children with Autism Spectrum Disorder (ASD) who meet certain criteria outlined by the Social Security Administration (SSA) can qualify for programs like Supplemental Security Income (SSI).

How much is autism allowance in USA? ›

The maximum possible disability benefit for autism in 2024 is $943 per month for SSI and about $3,822 per month for SSDI. These maximums apply regardless of what condition you have or whether you apply with one condition or multiple. The actual amount you'll receive depends on your specific circ*mstances.

Do parents get paid if a child has autism? ›

IHSS is a California program that provides financial support for in-home caretakers of children with developmental disabilities including autism.

What is a child with autism entitled to? ›

Understanding Benefits for Autism

Key benefits include Disability Living Allowance (DLA) for children, Personal Independence Payment (PIP) for adults, Carer's Allowance, and specific provisions within Universal Credit.

What bothers an autistic person? ›

Many autistic people experience hypersensitivity to bright lights or certain light wavelengths (e.g., LED or fluorescent lights). Certain sounds, smells, textures and tastes can also be overwhelming. This can result in sensory avoidance – trying to get away from stimuli that most people can easily tune out.

What do autistic people like the most? ›

Many autistic people have intense and highly-focused interests, often from a fairly young age. These can change over time or be lifelong. It can be art, music, gardening, animals, postcodes or numbers.

Can autistic people be generous? ›

The researchers report, “We show that compared to a neurotypical group, autistic adults were more generous to other people, especially to those who were more socially distant.” They also were less influenced by the framing of the task as a gain or a loss for themselves.

How do people with autism get paid? ›

Adults with autism may qualify through the Social Security Disability Insurance program. Adults and children with disabilities may qualify to receive monthly payments through the Supplemental Security Income program. An overview of SSDI and SSI follows, focusing on benefits payable to an adult or child with autism.

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

Supplemental Security Income (SSI) for special needs

Children on Supplemental Security Income (SSI) receive $791 per month. In most states, a child eligible for SSI will also be eligible for Medicaid. To qualify for SSI, the child must have "marked and severe functional limitations," as determined by medical evidence.

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 is compensation for autism? ›

Compensation refers to accepting the core features of autism and creating a life that allows for them, without diminishing or compromising the authentic self.

Does autism count as a disability for taxes? ›

For income tax purposes, disabled means "unable to perform gainful work." So it depends on the degree of autism. Gainful work is work done for at least minimum wage.

What are the benefits of high functioning autism? ›

High functioning autistic individuals tend to be particularly honest, loyal, and reliable — some of the most valuable traits for a long-term relationship. While they may not be able to socialise with others, make friends, or build relationships, they are more than capable of loving and having romantic relationships.

Is high functioning autism a disability? ›

The recognition of high-functioning autism as a disability has helped to ensure that individuals receive the support and accommodations they need to thrive in various aspects of life while also celebrating their unique strengths and achievements.

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