Opinion: My son relies on Medicaid for round-the-clock care. Republicans want to cut it.

Tax season has come and gone yet again, with millions of American families filing last month. But as my family took part in this annual ritual, nothing felt quite the same.

Never before have we been so gravely concerned about the future of the programs our taxes support, including Medicaid, which our family relies on to help our 16-year-old son, Will, thrive.

At age 5, Will was diagnosed with FOXG1 syndrome, a rare genetic disorder that causes global developmental delays, neurological problems, and other health issues. Children with FOXG1, lovingly called Foxes, need round-the-clock care. Will doesn’t communicate verbally and uses a wheelchair.  When he was a baby, I left my career as a librarian to care for him full-time while my wife, Maggie, continues to work in healthcare. 

Medicaid is nothing short of a lifeline for us. Without it, I have no idea how we’d afford Will’s care and medical equipment. Therapies have helped him immensely, most notably with vision. We suspect his range of vision was less than one foot at birth, but therapy improved it to around 20 feet, offering him a better future. Surgically, he’s had a feeding tube placed, cataracts removed, and rods implanted in his back to help correct scoliosis. All of that was possible because of Medicaid. Today, he’s a blessedly happy boy, smiling and laughing all day long.

Recently, I qualified for a stipend as a live-in caregiver through Medicaid. That’s made an enormous difference and has enabled us to get mostly out of debt, with the exception of our mortgage. We are not wealthy – like most families in this country today, we’re just trying to make it day-to-day.  

But our future is uncertain, because President Trump and Republicans in Congress are prioritizing the interests of their billionaire friends over the basic needs of kids like Will. The latest Republican budget resolution would slash hundreds of billions of dollars from Medicaid and other essential programs, all to pay for more tax breaks for those with excessive wealth. 

That’s unthinkable. These cuts would have devastating consequences for our family and millions of others, here in Pennsylvania across the country. Frankly, it’s baffling to me how any elected leader could get these priorities so backwards. 

It’s also heartbreaking, because I’ve been hopeful that our country was moving forward in recognizing the need to invest in the care economy. In particular, our family has been proud to speak out on the need to invest in living wages for care workers. 

It’s no secret that care workers are leaving the sector in droves because many can make more money working just about anywhere else. As a result, we’ve struggled to access the care support we qualify for. I have two herniated discs from trying to lift Will on my own, because aides are so difficult to find. Slashing Medicaid funds would send us in the wrong direction and make it even harder for families like ours to find care. 

As my wife and I get older, we’re confronting the fact that we won’t be able to care for Will forever. We know as he continues to grow, he’ll need a strong care infrastructure to survive and live the life he deserves. That will only happen if we have a strong, stable, fully funded Medicaid program. 

I hope you will join me in calling on Congress not to treat our nation’s budget as a free for all for the ultra-rich, leaving working families to foot the bill. We can’t afford another round of tax breaks for billionaires if it means gutting the health, education, and nutrition programs that families and our economy depend on.