The financial burden of having a child with autism is real. A study published in Pediatrics (2014) estimated families spend $17,000 more on autism expenses than families that do not have a child with autism. Research also found that lifetime costs of caring for a child with autism is about $1.4 million. Insurance and government assistance cover part of it. However, families are often burdened with high out-of-pocket costs when they also have lower income levels. So how can you overcome the financial burden of autism?
Although we live on one income, we have been fortunate to have enough income to cover our expenses. I am a personal finance geek, so I enjoy looking for ways to maximize our money and find ways to save on expenses. That has come in handy to find ways to cover the costs associated with our son J’s autism. That includes the higher health plan deductibles, coinsurance and therapy not covered by insurance. I have followed the steps throughout the more than a decade that we’ve been on this autism and ADHD journey.
1. Research assistance options
If caring for your child does not allow you to work enough hours or hold a job that brings in enough income for living, you need to first research your assistance options through your state. There are many programs that help provide a safety net for families when they are needed. They can be key in helping you to overcome the financial burden of autism.
2. Understand your health care benefits
Our kids tend to need a lot of medical services, including behavioral therapy, occupational therapy, applied behavioral analysis (ABA), speech therapy and more. Those are, of course, on top of all the general medical needs such as visits to your child’s primary care physician, vision exams, dental check-ups and more.
I have found that it’s difficult to locate a detailed overview of my health plan benefits, so I’ve taken the time to call my plan’s customer service to better understand what services are covered for autism, the deductible we must pay and coinsurance or copay requirements. Sometimes, I’ve discovered a service I thought wasn’t covered at all is covered at a certain amount if I took J to an in-network provider. It’s a pain to have to wait on hold to talk to a member service representative, but I think it’s been worth the effort in the long run.
3. Look for in-network providers and compare prices
One way to save a lot of money on medical services is to stay with in-network providers for your health plan. Usually they have online provider directories to search for doctors and other health care professionals in your area. Or if you do locate a provider near you, always ask if they accept your insurance as an in-network provider before making the first appointment. (Understanding this also can help you create a dream team for your child.)
Even for in-network providers, your health plan may offer some price comparisons for different types of services on their website. It’s good to look for that information, so you will understand the cost. It’s especially helpful if you are on the fence about whether your child really needs a specific therapy or service.
4. Apply for a Medicaid autism waiver
Applying for a Medicaid autism waiver takes some time – completing the forms and being put on the waitlist for the waiver, but it offers so many benefits. The waiver is generally not based on financial need but on the medical needs of the patient. Therefore, even if you make a decent income, your child may be eligible for the waiver, depending on which state you live in.
I know the waiver has been really helpful for covering services for our son J that aren’t usually covered by traditional insurance. He received a few years of music therapy through the waiver, which has been such a great way to help him cope with anxiety from his autism. It also covered summer camp because it was run by a provider for patient assistance and care services. He also has received behavior therapy that was in addition to seeing his normal therapist through our traditional medical insurance.
The type of services and the amount that is provided for each child is determined by your state. You also work with a case manager who helps to arrange and manage your child’s care that they receive through the waiver.
I was hesitant to apply because the wait was so long when J was young. However, our state received some funding that allowed them to eliminate the backlog, so he received the waiver so much earlier than we thought. We also were able to receive more services – such as music therapy – than we would have since those are covered by the waiver but not our insurance.
5. Contact your local autism patient advocacy group
When you don’t know what resources are available in your area or where to start, reach out to a local patient advocacy group such as the local chapter of the Autism Society of America or even a local autism support group. They often can tell you what is available and even let you know what type of assistance they offer to families to help them overcome the financial burden of autism. Your child’s school may also have information available.
6. Budget for expected and unexpected expenses
As a personal finance geek myself, I am weird in that I love budgeting. (Yes, I know that many people view “budget” as a four-letter word!) I have found that it gives me more freedom in my spending and helps me to create a spending plan for our family. That allows me to not only budget for the normal monthly expenses but also put away rainy day funds to cover costs the come up infrequently or unexpectedly. For budgeting, we love You Need a Budget (referral link), also called YNAB. It does have a cost, but I found it pays back dividends in how well we are able to track and plan our expenses. Other free options in Every Dollar from Dave Ramsey and Mint.com.
Having an emergency fund of three to six months income is so important! It can act as a buffer when a medical or expense arises that you hadn’t planned for or anticipated. We can always expect that unplanned for costs will happen from time to time. An emergency fund allows you to cover it without going into debt.
7. Evaluate your spending to find ways to reduce expenses
There are so many ways to save money! However, the first step is to evaluate what you are spending and determine how you can trim your expenses. Do you spend too much on groceries? (With two teenage boys, this is an area we struggle with in our budget!) Could you switch to generics, change to a less expensive store like Aldi or use coupons if you don’t have a discount grocer near you? Do you eat out too much? To reduce takeout, could you batch cook on the weekends and freeze dinners to eat later. Is your electric bill sky high? Could you make a concerted effort to turn off lights, lower your temperature for heating/increase it for cooling or choose energy efficient appliances when they need to be replaced?
One way to gain ideas for how reduce spending or live more frugal is to follow some personal finance blogs. Some of my favorite are Frugalwoods, The Simple Dollar, Frugal Girl and The Penny Hoarder. These will offer some great ideas and additional tips for how you can overcome the financial burden of autism.
Looking for a couple of personal finance books with some good advice? A few of my favorites are Total Money Makeover by Dave Ramsey (affiliate link), You Need a Budget by Jesse Mecham (affiliate link), and Your Money or Your Life by Vicki Robin and Joe Dominguez (affiliate link).
8. Set up your finances to make things easier for you
You already have a great deal on your plate with taking care of your child, arranging all their care, going to various appointments, communicating with your child’s teachers and so much more. That is on top of all the regular life stuff like working, managing your household, caring for your other children, and trying to fit in some fun activities.
Therefore, setting up your finances to run automatically when you can make life easier. For example, set up on reoccurring bills each month on autopay and paperless billing. Then as you receive notifications of your bills coming up, you can quickly note them in your checking account and record them in your expense tracking. It only takes a couple of minutes, which is less time than writing a check and sending it via mail.
You also can set up automatic transfers from your checking to your savings account through your bank to put money into an emergency fund or savings account. Have an ABLE or 529 account for your child? Set up automatic transfers for those contributions as well.
I also have an alert set up through my credit card to send me an email whenever a purchase is made without my card being present. That allows me to make sure we aren’t missing any online purchases that we forgot to account for in YNAB. It also allows me to catch any fraudulent activity when it occurs or remind me of an annual subscription that we may be able to cancel if we aren’t using it.
9. Consider a side hustle
Do you have a hobby or activity that you do well that you could make extra income doing? If you have some time, it may be worth capitalizing on something you enjoy, bringing in some extra money.
For example, if you love making crafts, then you could sell those on Etsy or through Amazon Marketplace. If you love restoring furniture, you could sell the restored items through Craigslist, a local consignment shop or the Facebook marketplace for your local area. Love to write? Start a blog or do some freelance writing. The possibilities are endless.
Even though money issues can be stressful, there are ways you can overcome the financial burden of autism. What are some ways you’ve been able to successfully manage your finances despite the difficulties covering the expenses of autism? Leave a comment to share and encourage others on this journey!
