I am raising a severely disabled child with massive, life-limiting challenges, who is happy and who brings joy to many people in his life. For as long as he is here, he can have a full, beautiful and worthy life. It is my job to make that possible.
Still, the most common thing that people say to us when they learn about our lives is, “I don’t know how you do it.” I most often take it for the compliment that it is meant as. But lately, a different answer has been forming in my head.
You want to know how we can do it? It’s a simple answer: Medicaid Disability.
That’s it. That’s how we can keep him alive and keep a grasp of sanity.
More technically, based on his multiple diagnoses and how severely they impact his life, he is part of the Medicaid Disability Waiver program, for which he is qualified until the age of 65 (when he qualifies for Medicare), regardless of our income. Medicaid is how he we keep him supplied with the medication and medical equipment that would otherwise cost my family $8,500 a month in a “healthy” month. A bad medical episode could send those costs much, much higher: One day, when he was a newborn, I sat on my living room floor weeping as I opened the day’s mail and had $148,000 worth of medical bills for his care.
Thankfully, our country – through Medicaid – recognizes that bills like those are too much for families to take on and still survive financially — or, at least, they did.
At first, I was ashamed on some level that we were using Medicaid; it felt like a dirty secret. I felt like some of the people in my life would judge me negatively for my child being on it — and some did. Some still do. Some will judge us even while reading this, even knowing how severe my child’s disabilities are.
The negative narrative about “hand-outs” has been so pervasive in our culture that, even though my family and I have been paying into the system for decades, some see it as a character flaw that we now need to draw on it at all. But the fact is we do need help: We have a severely disabled child. We cannot keep him keep him alive and thriving and keep being contributing members of society ourselves without assistance in paying for his care.
Cutting $800 billion from Medicaid over 10 years, as the Senate health care bill proposed, will be devastating for my family, and families like ours. I am sick at the thought that Medicaid Disability is on the chopping block, because lifetime coverage caps in the individual insurance market will target people like my son and make his long-term survival much harder. I am not sure how I would keep him alive if we lose access to his medications because we can’t afford to pay for them.
But I know that he has an advocate to write this, and there are many children like him who do not.
I think — I hope — that many people just do not understand how the proposed Medicaid cuts will make it more difficult for children like mine to survive. I know that many people don’t understand how schools use Medicaid funds to help children like mine attend school in a safe and productive way. (Without these funds from Medicaid, schools will still legally required to make certain adaptations for students dealing with disabilities; they just won’t receive the funds to cover them, so all students will be impacted if this funding to our public schools is reduced or eliminated.) I believe that many people do not understand that, one day, they might need this program too.
You may think a major accident or a rare illness will never happen to you or your family. You might think that you make too much money to ever qualify for Medicaid. But if you think that you would never need Medicaid, you are seriously underestimating the cost of having a rare disease.
As it stands today, if something happened to us, my son’s health care costs would still be taken care of, because he is enrolled in a program set up to help take care of people with disabilities in our society. I do not know if this will be true in a month.
If the Medicaid cuts in the Senate bill go through, people like my son will die. Parents and caregivers like me will have to quit their jobs to take care of disabled family members, making it even more difficult to pay for care. Families like mine will be devastated, in more ways than one.
But there is a way for people to help: They can write, call and vote, so that families like mine are not left without any realistic options to keep their children alive.