Opening the mail can be frightening, especially when you open an astronomical medical bill you cannot pay. It is not the kind of bill that means cutting back for a few months. It is a bill with a balance so large that it does not seem real.
Sophia Finocchio is 15 years old and has Down syndrome and autism. Last July, she began receiving ABA (applied behavior analysis) services through The Perfect Child. A year later, her mother, Kiersten Messier, was shocked when the family received a $1.48 million bill. A recent WSMV 4 Investigates report found that some families in Tennessee are facing bills ranging from roughly $364,000 to nearly $1.5 million.
Years earlier, Kristina Cunningham’s family experienced a different version of that uncertainty. Cunningham suffered a stroke while in Kansas, and doctors arranged for her to be flown to Massachusetts General Hospital. Her family believed the medically necessary flight would be covered. Then an explanation of benefits arrived, showing $474,725 in charges, while her insurance company and Angel MedFlight disputed the payment.
The circumstances are different, but something painfully familiar connects these stories. A person needs care, and the care is provided. Then, somewhere between providers and the insurance companies, an enormous number appears. The person who needed care is left trying to understand what that number means for their life.
Disabled people and their families learn a language most people do not understand. We learn about eligibility requirements, prior authorizations, service hours, benefits, and appeals. You learn it because you have to, usually when some part of your life already depends on understanding it correctly.
I have received SSI, or Supplemental Security Income, since I was 16, and I rely on PCA, or personal care assistant, hours. My experience is quite different from opening a bill for hundreds of thousands of dollars. But I recognize the quieter uncertainty underneath these stories.
I think about that uncertainty when I think about my PCA hours. Somewhere, they exist as a number on a page. For me, those hours mean help with everyday tasks. They are part of what allows me to live at home and have a sense of independence.
This spring, I spent two months appealing a decision about my PCA services. On paper, it was an appeal. In my life, it was two months of wondering what might happen to the support I depend on every day. That experience reminded me how little paperwork can capture the life behind it.
I have spent much of my life learning how to navigate systems because I need support. I know there will always be forms, decisions, and rules. However, understanding those systems should not become a job in itself.
I am 27. I want time to think about my writing, my relationships, and my future. I want to think about the same things any other 27-year-old does without wondering what might happen to the services I need.
Disabled people are not asking for a life without paperwork. We are asking for something more basic. We want to know that getting the help we need will not keep us awake at night worrying.
There is always a person behind the paperwork. I wish the healthcare system let people spend more time living, and less time worrying about paperwork.
Sources:
Bebinger, Martha. “$474,725: Mass. Stroke Patient Receives ‘Outrageous’ Medical Flight Bill.” WBUR, 20 Dec. 2018, https://www.wbur.org/news/2018/12/20/cunningham-angel-medflight-charges .
Finley, Jeremy. “‘Crushing Cost.’ Tennessee Family of Daughter with Autism Faces $1.4 Million Bill from New York Therapy Provider.” WSMV, 4 Nov. 2026, https://www.wsmv.com/2026/11/04/crushing-cost-tennessee-family-daughter-with-autism-faces-14-million-bill-new-york-therapy-provider/ .