Sneaky New Move By Shameless Republicans Puts Millions Of American Lives In Danger

My daughter Claire loves ice cream sundaes, trips to amusement parks and watching “Gossip Girl” with her little sister while lounging on the sofa. None of this should be remarkable. However, because Claire is disabled and has complex medical needs, including asthma, epilepsy, autism, and cardiac, pulmonary and cognitive issues, her years living happily, and mostly healthily, at home were never promised.

Not all that long ago, children like Claire would have grown up in cold, sterile institutions instead of at home with their families. That’s because most private insurance plans, including Claire’s, don’t cover many of the medical costs and supports disabled people, including children, need to survive, attend school, live at home and be an active part of their communities.

It is only because of access to Medicaid that Claire, and countless other disabled children across the country, have been able to grow up at home with their families, where they are wanted and loved. Medicaid has helped pay for the bed Claire needs to safely sleep at home, the wheelchair she uses for trips to the park and the hearing aid she uses to hear what others are saying.

Claire is nonverbal, and Medicaid has paid for the assistive communication device she uses to let us know, in simple terms, what’s on her mind. Medicaid has paid for the chair Claire uses to keep her upright when she’s eating and the straps that keep her safe in our car now that she’s outgrown a traditional car seat. Without Medicaid, Claire wouldn’t have access to the countless occupational, physical, speech, audiology and behavioral therapies that allow her to attend school and become as independent as possible, even if that looks a little different for her than it does for most people. Medicaid has allowed her to face countless health scares and accessibility barriers head-on and emerge with dignity.

Crucially, Medicaid pays for the home nursing and personal care support that Claire needs daily to help her get dressed, bathe, eat, manage her medication, and ensure that she doesn’t fall and injure herself or wander off. It is only because of this support that her father and I can work, cook family meals, do laundry, and attend her younger siblings’ soccer games and school plays. Without Medicaid, this type of home care would be out of reach for our family.

Despite evidence showing that the type of home care Claire receives saves money and has better outcomes, Republicans are trying to remove funding for life-saving, life-enriching care — the same care Claire and others like her need to stay healthy and at home where they belong.

In the clearest sign that Republicans know what they are doing is not just wrong but shameful, they waited until late at night on Mother’s Day to release the text of Trump’s devastating “big, beautiful bill” that would gut Medicaid, hoping it would go unnoticed. Then, continuing the pattern of wanting to avoid attention, the GOP convened a meeting under the cover of darkness to debate the bill, whose funding cuts likely would take Medicaid away from my daughter and millions of other people with disabilities who rely on the essential program. Despite the gravity of the late-night meeting for millions of Americans, at least one GOP congressman slept through part of the discussion, seemingly unbothered by the deadly consequences for constituents in his district and beyond, including my own daughter.

Millions of other Americans who get health insurance through Medicare and the Affordable Care Act also stand to lose access to health care under this bill. All told, the nonpartisan Congressional Budget Office estimates that if passed, the “big, beautiful bill” would result in 14 million Americans losing their health insurance. Among them are the most vulnerable members of our society: the chronically ill, the elderly and the disabled. Without sufficient Medicaid funding, hospitals across the country, particularly in rural areas, will be forced to shut their doors.

Moreover, Republicans aren’t even pretending that any of these cuts — these deaths, these lives shattered — will reduce the deficit. After cutting through the meaningless rhetoric, their goal is clear — they are destroying lives to provide tax cuts to the very rich. It’s not surprising they are choosing to conduct such business in the shadows, away from the public eye, but that doesn’t mean it’s not happening, and it’s keeping worried moms like me up at night. It doesn’t mean the bill’s devastating impact will go unnoticed, either.

Democrats, in the light of day, are sharing stories of families like mine. It’s a sharp contrast to the sneaky, late-night maneuverings coming from the other side of the aisle. A few weeks ago, my family joined New Jersey Sen. Cory Booker and House Minority Leader Hakeem Jeffries (N.Y.) on the Capitol steps to discuss what cuts in Medicaid would mean for Claire and other disabled children. In the sunshine, from dawn to dusk, they listened to the stories of families who depend on Medicaid. Sen. Booker took my daughter’s hand, let her rub his head “for luck” and broadcast to the entire world why he was fighting for Claire, because she deserves a future. This is how politicians and decent people act when they are truly acting on the conviction of their beliefs, without the need to cower and hide, hoping no one pays attention to late-night, closed-door dealings.

Disability activists like Elena Hung, my dear friend and co-founder of Little Lobbyists, spent the night at the Capitol in the darkness and rain, telling her story to anyone who would listen. Hung had just returned to her home near Washington, D.C., after spending several days at Children’s Hospital in Philadelphia, where her daughter Xiomara was being treated for complications related to a kidney transplant she had last year, thanks to Medicaid. Democratic Congresswoman Katherine Clark (Mass.) ventured outside in the rain to meet with Hung to literally “shine a light” on what Republicans are trying to keep hidden in the shadows.

Booker, Jeffries and Clark all vowed to bring the stories of Claire, Xiomara and other disabled children back to their Republican colleagues. Yet, it wasn’t enough. Once again, in the middle of the night, House Republicans met while most Americans slept. This time to hold a vote on the bill that would alter the course of my daughter’s life. While most GOP members hoped that their votes would go unnoticed by their constituents, Elena and I, along with the parents of other disabled children who rely on Medicaid, texted throughout the night, wondering how the so-called party of “family values” could be so cruel. How could they say they want to encourage families to have more children at the same time they used their power, their votes, to remove the safety net that ensures these children will be cared for if they need help?

Claire, and the 14 million other Americans who stand to lose access to life-saving care and the supports that keep them at home, only need four Republican senators to stand up and say, this is enough, to declare, in the daylight, that they are unwilling to sacrifice American lives for tax cuts to the very wealthy, to acknowledge that this bill does nothing to reduce “waste and fraud.” We hope they are out there, ready to do the right thing. 

Jamie Davis Smith is a writer, attorney and mother of four who lives in Washington, D.C. Follow her on Instagram.

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