A recent report has revealed that the costs of care of individuals with ASD is $137 billion. It begs you to ask the question, Is autism the most expensive disability out there? On average, parents with a child with autism will spend between $1.4 and $2.4 million on ASD through their lifetime. This is a massive cost that you are certainly going to feel on your bank balance. As such, it is important that you are aware what these costs are and how to make them a little easier to handle.
It’s been my experience that as soon as insurance hears autism, they stop paying or determine services aren’t necessary. . Like the time we asked for speech when Logan was 3 because he didn’t talk and they told us that they would only cover speech if he lost it. What? Speech is more important if you lose it than if you never had it? Dumb, dumb, dumb!!!! Whether he had it and lost it or never had it didn’t change the fact that he needed it. It just determined who was going to pay for it, us or them.
What Impacts The Cost Of ASD Care?
You will find the cost of care differs dramatically depending on where your child falls on the spectrum. High functioning children with autism (Level 1) will not require as much long term financial support as more severe (Level 3) children who fall further down the spectrum. Those who have communication difficulties will also need more care and attention which impact costs. As such, it is likely that the costs of ASD care vary dramatically from family to family. Just like not all therapies will work with EVERY child with autism, the cost of care follows the same rule. Autism is the most expensive disability for some but not for others. The uniting factor for most families affected by autism is that often bankrupts families or causes parents to wipe out their retirement accounts as well as drain their savings. Living paycheck to paycheck is reality for more autism families than not.
Where Do The Costs Come From?
Specialized education options can be one of the main costs that you will need to deal with if your child has autism. This is particularly true if your child is unable to cope in mainstream education or would be better suited for special education services. The cost of this on average can be upwards of $8000 per year. You will need to decide for yourself whether your child would be better suited for this type of education option. Homeschooling is not always the best option for the child or the family. Homeschooling has it’s costs too in curriculum, therapy needs, and respite.
Another big income issue is lost income. Some parents will find that one of them needs to stay at home with their child because he/she needs constant care. If not constant care, the never ending therapy and specialist appointments make for a very busy schedule. In lots of families with autism, working from home becomes a viable option to balance their families’ needs. More often than not, its’ a one income family if autism is involved.
Modern technology has allowed parents a chance to interact and communicate with their child as well as providing them with an environment where they feel comfortable. However, systems, technology and equipment like this cost money a fair amount of money. If you want to build a sensory room in your home, you may need from a few hundred to upwards of five thousand especially if you want something like a full sensory wall. It is possible to set one up on a budget with a plan. Keeping them safe from eloping with a gps tracker like Angelsense is a welcome relief for many families but it costs money. Money that insurance doesn’t often reimburse or cover in the first place.
Managing Your Costs
There are various ways you can manage the costs. A budgeting app like YNAB or Mint is useful to manage costs and making sure that you don’t overspend. It’s always good to keep track of how much the running costs total up. You may or may not end up with enough expenses to itemize on your taxes at the end of the year. If you have the receipts, it makes it an option during the dreaded tax season.
DIY therapy options and other measures can make affording autism easier as well. Prioritizing your child needs are crucial to keeping costs in check. Finding grants as well as other organizations to help can help ease the cost. Finally, check with your local Social Security office to see if your child qualifies for assistance. Costs can be kept down. One must simply think outside the box for resources. Meal planning and having a cash only system are another way to cut costs for out of control therapy costs. Asking grandparents or other important people in your child’s life to cover therapy costs or buy much needed therapy items on birthdays and holidays is a great option. Prioritizing your child’s needs and working on one thing at a time is another way we survive here in Autismland.
If you are feeling the pinch, know that you aren’t alone in your financial woes. Lots and lots of other autism families are in the trenches with you. It may seem insurmountable. There may be therapies you have to pass on because you can’t afford it. Vacations will be few and far between. I would not change anything from what we spent on Logan in the past years. We have spent enough on Logan and his therapies to have bought and paid for a house twice. God has ALWAYS provided what we needed at the exact moment that we needed it. Was it easy? No. Is it over? We will be providing for Logan until the day he dies. Notice I didn’t say until the day we die. Should Logan outlive us, there is a plan in place to care for him. We have no other option.