My daughter Claire loves ice -Christmas Sundaes, travels to amusement parks and watching Gossip Girl with her little sister while settling on the couch. None of this should be remarkable. However, since Claire is disabled and has complex medical needs, including asthma, epilepsy, autism and heart, pulmonary and cognitive problems, her years live happily ever after, they have never been promised at home.
Not everything for a long time, children like Claire would grow up in cold, sterile institutions instead of home with their families. This is because most private insurance plans, including this, do not cover much of medical expenses and support people with disabilities, including children, have to survive, attend school, live at home and be an active part of their communities.
Just because of access to Medicaid Claire and countless other disabled children throughout the country, they managed to grow up at home with their families where they are wanted and loved. Medicaid has helped pay for the bed that Claire has to sleep safely at home, the wheelchair he uses for travel to the park, and the hearing aid he uses to hear what others say.
Claire is non -verbal and Medicaid has paid for the utility communication device she uses to let us know, in simple words what is in mind. Medicaid has paid for the chair that Claire uses to keep her upright when she eats, and the straps that keep her in our car now when a traditional car seat has grown. Without Medicaid, Claire would not have access to countless professional, physical, speech, audiology and behavioral therapies that allow her to attend school and become as independent as possible, even if it looks a little different for her than most people. Medicaid allowed her to encounter countless health scares and accessibility barriers and to appear with dignity.
Claire, a real miracle woman, poses in front of her home. With the kind assistance of Jamie Davis Smith
The most important thing is that Medicaid pays for the home nurse and personal care that Claire needs daily to help her dress, bathe, eat, manage her medicines and guarantee that she does not fall or wander or wander. Just because of this support, her father and I can work, cook family dishes, wash and attend the football matches of our younger brothers and sisters and school games. Without Medicaid, this type of home care would be out of reach of our family.
Despite the evidence showing that the type of home care that Claire receives saves money and has better results, Republicans are trying to eliminate funding for life-saving, life-enriching care-the same care Claire and others like it should remain healthy at home where they belong.
In the most clear sign that the Republicans know what they are doing is not only wrong, but shameful, they waited late at night on the day of the mother to release the text of Trump’s devastating “big, beautiful bill”, which will tingle Medicaid, hoping that he will go unnoticed. Then, continuing the request model to avoid attention, GOP convenes a darkness of the darkness to discuss the bill whose redundancies are likely to take Medicaid from my daughter and millions of other disabled people who rely on the main program. Despite the weight of the late night meeting for millions of Americans, at least one GOP congress was sleeping in a part of the discussion, seemingly carefree by the deadly consequences of voters in his area and outside, including my own daughter.
Millions of other Americans who receive health insurance via Medicare and the Affected Care Act also lose access to health care under this bill. All of the said, the non -partisan service for the Congress budget estimates that if it is accepted, the “big, beautiful account” will cause 14 million Americans to lose their health insurance. Among them are the most vulnerable members of our society: chronically ill, adults and disabilities. Without sufficient funding for Medicaid hospitals across the country, especially in rural areas, they will be forced to close their doors.
Moreover, Republicans do not even pretend that any of these abbreviations – these deaths, these lives, broken – will reduce the deficit. After cutting the meaningless rhetoric, their goal is clear – they destroy life to ensure the taxes of the very rich. It is not surprising that they choose to do such a business in the shadows, away from the eyes of society, but that does not mean that it is not happening, and it is to worry mothers like me at night. This does not mean that even the devastating impact of the bill will go unnoticed.
Claire received treatment with a nebulizer for asthma administered by her father. With the kind assistance of Jamie Davis Smith
Democrats, in the light of the day, share stories of families like mine. This is a sharp contrast to the sneaky maneuvers on a late night coming from the other side of the path. A few weeks ago, my family joined the New Jersey Senator Corey Booker and the leader of Hake Hakem Jeffrries (New York) at Capitol’s footsteps to discuss what Medicaid cuts for Claire and other disabled children mean. In the sun, from dawn to dusk, they listened to the stories of families that depend on Medicaid. Senator Booker took my daughter’s hand, let her rub his head “for luck” and radiate to the whole world, why he was fighting for Claire because she deserves a future. This is how politicians and decent people work when they really act on the conviction of their beliefs, without having to conceal and hide, hoping no one pays attention to closed -door deals.
Disability activists like Elena Hub, my dear friend and co -founder of small lobbyists, spent the night in the Capitol in darkness and rain, telling her story to anyone who will listen. Hung just returned to his home near Washington, Colombia County after spending a few days at the Philadelphia Children’s Hospital, where her daughter Siomara was treated for complications related to the kidney transplant she had last year thanks to Medicaid. Democratic Congress Catherine Clark (Massachusetts) went out in the rain to meet Hung to “shine light” on what Republicans are trying to continue to hide in the shadows.
Booker, Jeffrries and Clark vowed to bring back the stories of Claire, Siomara and other disabled children back to their republican counterparts. Still, it wasn’t enough. Once again, in the middle of the night, the home Republicans met while most Americans were sleeping. This time, to hold a vote on the bill to change my daughter’s life. While most GOP members hoped that their votes would go unnoticed by their voters, Elena and I, along with the parents of other disabled children who rely on Medicaid, sent text messages all night, wondering how the so -called “family values” could be so cruel. How can they say that they want to encourage families to have more children at the same time when they use their power, their voices to remove the safety net, which guarantees that these children will care if they need help?
Claire was holding a sign that insisted on the congress to save his access to Medicaid. With the kind assistance of Jamie Davis Smith
Claire and 14 million other Americans who are going to lose access to life -saving care and support that keep them at home only need four republican senators to stand up and say that this is enough to declare in the daylight that they do not want to sacrifice the American life for a lot of and fraud. ” We hope they are there, ready to do the right thing.
Jamie Davis Smith is a writer, lawyer and mother of four living in Washington, Colombia, followed by Instagram.
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