By Lisa Lightner

My son Kevin, through no fault of his own, was born with a chromosome disorder that significantly impacts his health and his life. I hate that our current system requires me to constantly describe him by his challenges and that families like mine have to expose private health information  just to keep our health care, but here goes. He has over 50 seizures a day, and that's not an exaggeration. Our epileptologist has told me that I have already witnessed more seizures than most neurologists see in their entire career. He is tube fed, and cannot read, write or talk. This is a random genetic mutation that we, his parents, could do nothing to “cause or prevent.” It's a one in a million, and we're the one. 

Medicaid has been a lifeline for him—covering critical therapies, medical care, and services that allow him to live at home instead of in an institution. But last night, Congress voted to take that away. Imagine putting work restrictions on a child like Kevin. 

The House of Representatives passed a bill slashing Medicaid, a move that will devastate families like mine. These cuts are not theoretical. They will mean fewer therapies, longer waitlists, and more children being denied the basic care they need to survive and thrive.

For Pennsylvania families, the stakes couldn’t be higher. Medicaid provides health care for over 1.2 million children in our state, including those with disabilities. Let's be clear--no political candidate won Pennsylvania by 1.2 million votes. None. Some only by a few hundred or few thousand votes. Future politicians who vote against our kids do so at their political peril.

Medicaid helps fund home- and community-based services so families can care for their children at home instead of placing them in institutional settings. It also supports school-based services, ensuring kids with disabilities receive speech therapy, occupational therapy, and other supports they need to access education.

If you have a child with an IEP, there’s a good chance Medicaid helps fund some of the services they receive at school. These cuts will force schools to make impossible choices—either cut services or find the money elsewhere in already stretched budgets. If schools lose that funding, prepare yourself for state and local property taxes to increase. Or cut other programs, like those for non-disabled students. Schools are federally obligated to provide special education services, so this is not an area they can cut. They are not federally obligated to provide a lot of other things, and those could disappear. 

The cruelty of this decision is hard to stomach. Democratic lawmakers tried to introduce amendments that would have preserved funding for Medicaid and Supplemental Nutrition Assistance Program (SNAP) benefits, ensuring vulnerable children wouldn’t pay the price for budget cuts. But every single GOP representative voted against them--even when they asked for an amendment restricting tax cuts for those who make a billion dollars a year. 

So, let’s be clear about what happened here. Congress did not cut Medicaid because they had to. They did it because they wanted to.

They chose to take away essential services from disabled children, the elderly, and low-income families while protecting tax breaks for the wealthiest Americans. My son—and millions of others—will suffer so that billionaires can get richer.

Families like mine are exhausted. We already spend hours fighting for our kids—battling for services, navigating a healthcare system that constantly tries to deny coverage, and advocating for basic dignity. Now, Congress wants to make it even harder.

But if they think we’ll just accept this, they’re wrong. I've been in the special needs world for almost 20 years, working in it professionally for 15. You don't want to tangle with special needs moms.

We fought back when Medicaid was on the chopping block in 2017. And we will fight back now.

I urge every Pennsylvanian to call their senators and demand that Medicaid be protected. Share your stories. Make them listen. Because if we don’t, our most vulnerable children will pay the price.

My son and I have spoken out about this issue before, in 2017 and 2018, and we’re ready to do it again. 

Kevin, and every other child who depends on Medicaid, deserves better than this.

Lisa Lightner is a  special education advocate who lives in Avondale.