Getting financial help to pay for my son’s medical treatments and therapies has been a lot of work. Even though I’m an accountant who works with finances all day, finding and getting help paying for the best care for my son has been exhausting at times. But along the way, I’ve learned that middle-class families whose children have high medical expenses can get some help. So I’m sharing my story in hopes that it also helps you.
First of all, a bit about my son, because this is really all about him:
He’s 15 years old and on the autism spectrum. His main symptoms are anxiety and obsessive compulsive disorder (OCD). During elementary school, he did pretty well in a standard classroom. But going to a large public middle school didn’t work. When he was in 7th grade, there were many days where his anxiety and OCD symptoms became so severe that he couldn’t leave his bedroom. Trying to make him go to school was a disaster. Eventually, he tried to take his own life. It got to the point where he needed almost-daily therapy and 2 hospitalizations just to survive. We tried homebound education and a smaller charter school before we found a school in Utah that’s also a residential treatment center. With the schooling and treatment there, he’s doing great.
But all of this costs a lot of money. And health insurance covers almost none of it. They only pay for residential treatment when he’s in the middle of a crisis. But when we did the kind of short-term hospitalizations that they cover, he went back into crisis just a few days after coming home. It was clear to everyone (him, us, and his doctors) that he needed the kind of longer-term residential care he’s getting now—everyone except the insurance company, that is.
His school arranges for him to get occupational therapy there and prescription medications mailed right to them. But the suppliers they use aren’t in-network for us, so our health insurance company has refused to cover most of those costs as well and charged out of pocket costs for his prescriptions – basically full cost.
We decided to appeal some of the decisions with our health insurance company. One of his treatment centers connected me to a company that helps with health insurance appeals. They filled out all the paperwork and called the insurance company for us. The treatment center paid the company for the first 10 hours of work, and we’ve paid them an hourly rate after that. You could probably find one of these companies by searching online for “health insurance appeals company.” We have also hired a lawyer and are starting the process to sue the insurance company to get them to pay for more of my son’s treatments.
In the meantime, even though my husband and I are both working professionals, we aren’t earning enough to pay for all of these out-of-pocket costs and also cover our basic monthly expenses. We have 2 younger children to take care of, too.
About a year ago, we applied for Supplemental Security Income (SSI) to help pay for some of my son’s treatment. It took about 3 months to be approved and was a lot easier than working with our health insurance company.
Just like this website’s SSI page explains, I filled out an online application. Within a couple weeks, I got a very short letter telling me that SSI got my application and I needed to make an in-person appointment.
I called my local Social Security office and asked for an appointment. I took the first available one, which was 4 weeks away. The letter told me to bring proof of income and proof that my son is a dependent, but it didn’t tell me very much else about what to bring to the appointment. As an accountant, I decided to use the same kind of financial report that I would put together for a client. If you want to, you can download my Excel file and use it. Just fill in the blanks for your own report.
In addition to a copy of my SSI application and our care notebook that would show all my son’s medical history, I brought a financial statement with:
I also brought backup for everything listed above. I had receipts, a copy of our mortgage statement, bills from the school, copies of credit card bills, a summary of my business from QuickBooks, and my husband’s paycheck stubs.
It took me about a day to get my son’s care notebook in order. The financial documents were easier to put together because, as an accountant, I file all of our bills and receipts as soon as they come in. That makes it a lot easier to pull out what I need.
Looking at the numbers, our case was clear. When you add my son’s medical expenses to our basic living expenses, there is no way our income could cover everything—and that’s leaving out things like restaurants and entertainment.
In the meeting, our SSI representative was very helpful. She heard our story, looked at our medical records and financial paperwork, and was very understanding. She approved our case and got us as much help as she could.
It’s not a lot of money, but it’s something.
Right now, our SSI checks are $490 a month. But a side benefit is that people who get SSI can usually get Medicaid too. We’re still working on getting that in place. It’s complicated because his school is in a different state. I’ve started working with a Centers for Medicare and Medicaid Services (CMS) representative whose job is to help people figure out complicated Medicaid cases that cross state lines. It’s been painfully slow to get through the process, but they’ve been very helpful. I’m hoping that Medicaid will help with more of our costs. If we were all in Texas, I would talk to my local Medicaid representative.
I know that many people don’t get approved for SSI on the first try, and have to file an appeal. It’s my understanding that you must appeal within 60 days of being denied. I think we got approved because our financial case and our son’s medical needs were so clearly spelled out.
Because I know I might have to show all of my financial information again for an SSI review someday, I like to keep track of the ways I spend my money each month. I find it easy to use the free Mint money manager app. I can put any credit card expense or check into a category for medical, business, or groceries in real time.
I’ve also gone digital. As soon as a new medical record or bill comes in, I scan and save it to a folder on my hard-drive. I’ve also organized my computer files so I can find things easily whenever I apply for other help. When I recently applied for a scholarship that would help pay for my son’s school, it was easy for me to pull up everything I needed to send them. (He got the scholarship, by the way!)
Getting SSI felt like a big win for our family, especially knowing that many families get denied. Hopefully, by making a clear financial case, you can get a win too.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.