How Medicaid Cuts Would Harm My Sons With Disabilities


In the current healthcare debate, many people seem to think that Medicaid is a handout to able-bodied people who choose not to work. However, around 90 percent of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold for Medicaid in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations.

As adults, both of my sons (who have Down syndrome) will rely on Medicaid for their medical coverage. It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this health care debate. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan and Medicaid is cut, what would the options be? Nothing here is clear, and for families like ours it’s terrifying.

In addition to his developmental and medical needs, Ben has serious mental health needs. He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his well-being is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with combined developmental, medical and psychiatric needs are sparse. If funding is cut, it would be nothing short of devastating for Ben and our family. But we aren’t the only ones. In fact, we’re pretty fortunate so far. My husband works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self-employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one we can manage.

Today we have spectacular medical science that’s evolving and growing daily. We are able to save lives in circumstances that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected — too expensive for any but the wealthiest citizens to afford out-of-pocket. Do we reserve such marvels for those who can afford to buy them? Is modern medicine a luxury for the few? Is it a commodity available to only those who have the cash reserves to pay for it? How do we decide who gets this care? Do we deny children whose parents don’t have jobs with a hearty benefit package? Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off? Or do we leave people with mental illness without access? This is dangerously close to eugenics.

I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help. I want to point out that it’s the “pro-life” party endorsing all of this, and I’m calling bullcrap. There is nothing life-affirming or life-protecting about any of this. This is prioritizing finances over people and it’s repugnant.

If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In 11 years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent. I’m quite savvy at finding and accessing them, and we have attended a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredible for certain things, but only a drop in the bucket compared to the day-to-day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs.

So I ask you, do you really think it’s OK for people to suffer and die when medical care is available, but not affordable?

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Follow this journey at Ben’s Writing, Running Mom.  

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