{"id":35857,"date":"2025-07-31T02:36:13","date_gmt":"2025-07-31T02:36:13","guid":{"rendered":"https:\/\/www.newsbeep.com\/ca\/35857\/"},"modified":"2025-07-31T02:36:13","modified_gmt":"2025-07-31T02:36:13","slug":"medicaid-let-me-bring-my-dying-daughter-home-the-big-beautiful-bill-might-change-that","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ca\/35857\/","title":{"rendered":"Medicaid let me bring my dying daughter home. The \u201cBig, Beautiful, Bill\u201d might change that."},"content":{"rendered":"

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For eight years, our family received Medicaid.<\/p>\n

I\u2019m a sociologist, and my research for my 2005 book<\/a> Promises I Can Keep made me a nationally recognized expert on poverty in the U.S. Even I had assumed\u2014incorrectly\u2014that Medicaid was only for families on welfare. Never, in a million years, did I see myself joining the ranks of the women I chronicled. Then my 2-year-old daughter, Cal, was diagnosed with a fatal neurological disorder.<\/p>\n

The second thing the social worker at the Children\u2019s Hospital of Philadelphia did\u2014right after filing the paperwork for the Make-A-Wish experience\u2014was enroll our family in Medicaid. At the time, I was bewildered by this. \u201cMedicaid is for poor families without health insurance. We have really good coverage,\u201d I said. The social worker just smiled and said, \u201cHoney, you\u2019re going to need it.\u201d<\/p>\n

According to the Congressional Budget Office, the passage of Donald Trump\u2019s \u201cBig Beautiful Bill\u201d will lead to 11.8 million Americans becoming uninsured by 2034<\/a>, largely due to about $1 trillion in spending cuts to Medicaid. Speaker of the House Mike Johnson has called<\/a> such claims fearmongering, responding that the only people who will lose benefits are those \u201cwho choose to do so.\u201d Republicans contend that the biggest Medicaid savings will come from new eligibility requirements for childless adults ages 19 to 64, who would have to enroll in school, volunteer, or find a job for 80 hours per month to keep their coverage. \u201cYou\u2019re talking about 4.8 million able-bodied workers, young men, for example, who are on Medicaid and not working\u2014they are choosing not to work when they can,\u201d Johnson has said. \u201cThat is called fraud; they are cheating the system.\u201d Given this political climate, some Americans may be surprised to learn it was President Ronald Reagan who transformed Medicaid coverage for catastrophically ill children back in the 1980s. The program, known colloquially as the Katie Beckett <\/a>waivers, made it possible for pediatric patients to receive hospital-level care in the home.<\/p>\n

In 1978, when Katie Beckett was just 4 months old, she contracted viral encephalitis, a brain infection, and fell into a coma. After she recovered, she suffered from paralysis that left her unable to breathe without a ventilator much of the day. Since Medicaid would only pay for the costly care if she remained in the hospital, she spent most of the first three years of her life living in an Iowa hospital. In 1981, Reagan heard about the Beckett family\u2019s plight and used his executive authority to waive the rules, allowing Katie to receive hospital-quality care at home. The following year, Congress codified the waiver into law. As Reagan noted<\/a> at the time, it cost significantly less\u2014about one-sixth as much\u2014for Beckett to receive the care at home.<\/p>\n

Four and a half decades later, 4.5 million disabled Americans depend on Medicaid<\/a> for home care; about 14 percent of them are under the age of 18. The day I enrolled in Medicaid, I arrived at the welfare office in a strip mall in Norristown, Pennsylvania, wearing my work clothes from my job as university professor and carrying a Tory Burch bag. The other women there that day were younger than my 42 years, and all had their kids with them. Mine were home with our French nanny, Audrey.<\/p>\n

When I finally got to speak to our welfare caseworker, I made a point of distancing myself from the other women standing in line with me. I heard myself say: \u201cI have a job and a husband and insurance. My kid has three years to live.\u201d In my hubris, I had internalized our society\u2019s stigma and scorn for people dependent on welfare. But the social worker was right. We needed Medicaid.<\/p>\n

With Medicaid, Cal\u2019s life was liberated from hospital rooms. We had nurses and the equipment to care for her in her bedroom, surrounded by her toys and books, at home with her family. Each time Cal was discharged from a hospital stay, and her nurse Peggy carried her back to her bedroom, Cal smiled and sighed with relief to be home. As Cal\u2019s sickness stole so much from her, including the ability to walk, talk, feed herself, and attend school, the only gift we could give her was keeping her home.<\/p>\n

Medicaid made it possible for me and my husband Pat to continue working. Those years in the labor force meant we could continue paying taxes and our mortgage, and save up money for our two older kids to attend college, expenses we would not have been able to pay had we been saddled with medical bills. Without Medicaid, our insurance would not have covered Cal\u2019s medications, wheelchairs, pediatric intensive care unit stays, or nursing care. Paying for those things out of pocket would have bankrupted us.<\/p>\n

The final family vacation we took with all three of our children was a Make-A-Wish trip to Martha\u2019s Vineyard. As a family, we never went to the movies, took the kids out to dinner at a restaurant, or even hosted birthday parties. For a decade, my husband and I never slept through the night, since we would be awakened with the monitors\u2019 alarms. The physical demands left me emotionally numb and absent for my friends, my colleagues, my students, and even my other children. All I could manage to do was keep Cal comfortable and cared for. Most days it seemed as if I was dying with her. But in the midst of all of it, my husband and I wanted to keep working. For the Medicaid families I know, leaving a job is something they consider when their child is near death or the demands of caregiving become too all-consuming and physically exhausting to work outside of the home. It\u2019s not a decision someone would make because they\u2019re too lazy to work, as some narratives would have you believe.<\/p>\n

Medicaid\u2019s role in child health policy has emerged as one of its greatest achievements. Today, almost half of all children<\/a> under age 18 are enrolled in Medicaid and the Children\u2019s Health Insurance Program (CHIP). While most children are healthy and thus relatively inexpensive to insure, those with complex health care needs represent some of Medicaid\u2019s costliest beneficiaries, especially when they require extensive care to remain at home.<\/p>\n

<\/p>\n

\"\"<\/p>\n

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With a program as complex as Medicaid, deep federal spending cuts will set off a chain reaction. The Commonwealth Fund, a private foundation focused on improving health care access, estimates 1 in 5 children<\/a> could be at risk of losing their Medicaid coverage under the BBB. When state governors are faced with painful decisions about how to disperse funds in a time of austerity, optional programs that extend care to disabled children\u2014including the Katie Beckett waiver\u2014may be on the chopping block. At minimum, I predict that Katie Beckett waivers will become even harder for new patients to access, and existing recipients may see reductions in approved services.<\/p>\n


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Katie Beckett died in 2012 at the age of 34. During her lifetime, she became a leading advocate for seriously ill and disabled children. Katie\u2019s mother, Julie, continued this work in her late daughter\u2019s name until her own death in 2022. In a statement<\/a> on Julie Beckett\u2019s death, U.S. Sen. Chuck Grassley said the nation \u201clost a passionate advocate for children and youth with special health care needs and disabilities.\u201d Back in 2017, during the first Trump presidency, as congressional leaders sought to cut funding to Medicaid, Julie Beckett published<\/a> an impassioned appeal that seems even more prescient today. \u201cIt\u2019s unacceptable to Katie\u2019s memory and to people with disabilities across the country that the services I fought so hard for are now being threatened by Republican members of Congress,\u201d she wrote. \u201cWe cannot anticipate future needs, which is why it is so important to preserve the Medicaid program. It needs to continue to be there when people need it the most.\u201d<\/p>\n

My daughter Cal lived for 10 years, far longer than expected. I believe we owe those extra years to the care she received through Pennsylvania\u2019s Medicaid program. Until the last few months of her life, Cal laughed and smiled every single day. Medicaid meant my daughter could spend her time in this world in our home, and leave this world in her brother\u2019s arms.<\/p>\n

I understand how easy it is for us to judge strangers receiving public assistance as frauds. A passerby who saw me wearing expensive clothes and driving a new car might have been enraged at the sight of me in the welfare office\u2019s parking lot. Many of us\u2014including some politicians\u2014cling to the conviction that with hard work and moral rectitude, suffering will not befall us. If you think that way, you are fortunate indeed.<\/p>\n

<\/p>\n

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