The financial struggles of families trying to care for special needs children is a topic not often discussed openly. So let’s discuss: debt reduction strategies and tips for riding the debt reduction struggle bus with special needs kids.
How did we get here?
When we found out we were pregnant with our twins, we did already live on a tight budget; however, we were able to make it work well because we carried no debt other than our house payment. We didn’t even have a car payment at that time. Enter the twins: a high risk pregnancy and 2 little babies who had a traumatic delivery and never met their developmental milestones. With the addition of the twins, we were now a family of 9, with the eldest son still a ways from being able to drive. Also my husband was working in a ministry setting with a very small salary.
It didn’t take long for the bills to start piling up. We had to buy a vehicle that would fit all 9 of us ( hello used Suburban that sat 9), and financially things got tight. Really, really tight.
I had taken a break from my nursing career to help my husband with his ministry and to homeschool our children for a few years. So a few months after the twins were born, I had to return to the hospital to work night shift full time to help pay the bills.
How the Student Loan Debt got added in
Working full time nursing wasn’t really a great answer as it left me exhausted and away from home most of the time when my children were home. I applied for nurse practitioner school about 10 months after I returned to work and got accepted. I then spent the next 2 years in full time school while the bills continued to pile up. It was a tough decision, but I couldn’t see working night shift for the rest of my life. I had never had student loans for undergraduate school so this was all new. I had to borrow money not only for the school tuition, but also for living expenses as I could not work full time and go to graduate school full time.
Therapy Bills, bills, bills.
Have you ever really looked at the price of speech, ABA, OT and all of the doctor and specialists appointments for your special needs kids? With the twins, we have to double everything. So double ABA costs, double speech, double, double, double………
Debt Reduction struggle bus with special needs children collides with corporate insurance.
After I graduated from school, I worked full time in my field for a large health care organization in our state. I did have corporate insurance benefits that did help somewhat with coverage. But we first had to pay our large deductible; then insurance kicked in coverage at about 70%; then finally we would max out of pocket ourselves every year by about June. It was a ridiculous cycle. Almost like a hamster wheel.
The cost of ABA therapy is astronomical. And we really weren’t seeing stellar results from all that money we invested. None of the companies that we used could ever staff us appropriately. And then Covid. UGH.
Enough is Enough
Almost 2 years ago, we stopped ABA therapy. I determined that we no longer will be using anything that will carry us further into debt. I don’t have any opposition to therapy. Our kids loved it. But somewhere along the way, I just realized that we cannot continue living this way forever. I was working myself to the bone.
I love Dave Ramsey and Financial Peace as well as the next church loving person. His updated book The Total Money Makeover, is available here https://amzn.to/47wqPBC. I have taken Financial Peace. But there is no amount of advice, no research, no information out there whatsoever that helps special needs families make sense of the debt reduction struggle bus with special needs kids. Not even on Pinterest. ( Well, not anymore, because you can follow me on Pinterest here https://www.pinterest.com/faithhealthautism/ ).
In my home state of NC, there is no assistance to special needs families whose parents both work and are above the income level. None. There is a weird, somewhat non-existent thing you apply for called the Innovations waiver that has a 10 year plus waiting list. We are on year 7.
Getting our budget under control
I am not one of those typical ” I wasn’t responsible and got myself into severe financial trouble” kind of stories. We have never lived above our means. But with kids on the autism spectrum, there is almost no way out of this? Or is there? I was just fed up! The harder I worked to pay for care to help them, the deeper in debt we got……. Sheeesh. No more. So in December of 2021, we said goodbye to therapy until we could pay all of our past debt off.
Since early 2022, we have embarked on a debt reduction journey like never before. Our dollars were counted and squeezed. It is not any easy journey people, and we still have these little nonverbal people that we have to provide for. Plus another autistic kid ( who is literally the most fun kid ever). And 4 other neurotypical kids. We were tired of the debt reduction struggle bus with special needs kids. We want real progress and permanent financial freedom. No more treading water. We want to be on solid ground.
That’s our story in a nutshell. I only tell this because I know that there are probably millions of us, and no one ever talks about it. We know that divorce rates are higher in special needs kids. I can’t even imagine what the bankruptcy rate is. But I tell our story because it needs to be told. And others like us need to know that we are not alone. The struggle bus is real.
My previous post discussed some free or almost free resources that I have found to help me since we aren’t able to pay for any services right now. You can read this post by clicking on this link: https://faithhealthautism.com/free-or-almost-free-autism-resources/ . In some ways , I am thankful. I have had some time to simplify and really enjoy my children in their current state. And they are so much fun. Yes, the days are hard. But I wouldn’t trade this.
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