By Lisa Ackerman
In May, new figures were released highlighting a huge increase in the annual costs of autism which have soared to $137 billion a year (1). This represents a three-fold increase within the last decade.
If you ask “who pays for autism?” my answer would be everyone. We know many families living with autism are carrying much of these costs. They put a second mortgage on their home, sell their home to move into an apartment or with relatives, take out multiple credit cards, borrow from family members, and often one parent ends up taking a second job to help make ends meet. Some families have opted to double-up households with two families living together sharing expenses so they can put most of their housing funds into their children’s needs.
A recent TACA membership survey where almost 2,000 families participated indicated how much they are spending for autism-related costs for their children. We found that an average of $27,000 was being spent per family yearly resulting in over $50,000,000 in annual out of pocket expenses. Some of these families were spending more than their annual take-home pay for basic services like behavioral and speech therapies.
It is important to note that an estimated 80% of those living with autism are ages 22 years or younger. We don’t have enough data to calculate the lifetime costs of autism. Based on what we know today, it is estimated that these costs are $3-5 million per affected individual. Sadly, with articles highlighting the tripling of costs, we don’t see this trend slowing down anytime soon.
With the recent downturn in the economy, special needs families are being hit hard; support services are drying up. Assistance for families is dwindling while the pool for those needing help is soaring. Supporting families living with autism has become harder. At TACA, we have fewer tools to assist these families than we had just a few years ago.
Here is an excerpt from a recent article featured in the Disability Scoop online news site highlighting the soaring costs of autism:
“We are paying for the costs of inaction and the costs of ‘inappropriate action,’” said David Mandell of the University of Pennsylvania, who is behind the research. “Social exclusion of individuals with autism and intellectual disability, and exclusion of higher-functioning individuals from employment opportunities are increasing the burden not only on these individuals and their families, but on society as a whole.”
At TACA, we agree. What can’t be measured is the hardship endured by families and individuals living with autism. Those costs are much higher.
These numbers are staggering, Lisa. I wonder what the numbers look like with regard to the families of individuals impacted by Autism. I’ve become downright depressed when I think about all of the interventions I would like to implement and realize that we’d need triple our current monthly income just to fund a fraction of them. For families with limited income (even moreso since my husband was discharged from the Marines after 13 years) like mine, it’s heartbreaking to open that proverbial Pandora’s Box, because once you are aware of what can be accomplished through biomedical interventions and the litany of therapies available, you want nothing more than to be able to provide it all for your loved one. When you have one affected child, it seems nearly impossible. When you have multiple children that require these treatments, it’s almost soul crushing.
I frequently say that I wish for my boys to be future tax payers rather than future tax burdens. With the current state of the economy, it has begun to feel as though everything is a fight…from obtaining adequate education to obtaining essential therapeutic services from the Regional Centers. Even the most fundamental services, like ABA and other traditional therapies, must be lobbied for in earnest if you don’t have the financial resources necessary to pay for these treatments yourself. The entire process takes its toll on caregivers…and the fallout from living in a virtual pressure cooker of stress and uncertainty impacts the entire family dynamic.
There has got to be a better solution. It’s tragic to see services for our loved ones dwindling at a time when our community’s numbers are growing exponentially. Our children have the potential to achieve greatness, if afforded the opportunity to do so. If not now…when? We’re certainly not going away any time soon. 😦