Opinion Today: America’s caregiving system is in crisis

What will it take to implement reform? [View in browser](~/AAAAAQA~/RgRnd9-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)|[nytimes.com](~/AAAAAQA~/RgRnd9-pP0SxaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~)[Continue reading the main story](#) [Ad](~/AAAAAQA~/RgRnd9-pP0SYaHR0cHM6Ly9saXZlaW50ZW50Lm5ld3lvcmt0aW1lc2luZm8uY29tL2NsaWNrP3M9MTYyMTM5JmxpPVRZJm09YWE0OTFlZjdmMWQ5NjRlNDk3OWZiNzg0ZTc0ZTAxZDcmcD1UWV8yMDI0MDEwMyZ0ZT0xJm5sPW9waW5pb24tdG9kYXkmZW1jPWVkaXRfdHlfMjAyNDAxMDNXA255dEIKZZSpWpVl2RfT9VIbdHJpc3RyYW1iYWxkd2luOTBAZ21haWwuY29tWAQAAAAD) [Opinion Today](~/AAAAAQA~/RgRnd9-pP0TAaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vc2VjdGlvbi9vcGluaW9uP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~) January 3, 2024 [Author Headshot] By Neel V. Patel Staff Editor, Opinion In September 2021 in The New York Times, the health care activist Ady Barkan [wrote a powerful plea](~/AAAAAQA~/RgRnd9-pP0TdaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyMS8wOS8wOC9vcGluaW9uL2Fscy1ob21lLWhlYWx0aC1jYXJlLmh0bWw_Y2FtcGFpZ25faWQ9MzkmZW1jPWVkaXRfdHlfMjAyNDAxMDMmaW5zdGFuY2VfaWQ9MTExNTczJm5sPW9waW5pb24tdG9kYXkmcmVnaV9pZD03NzY3NDk1MiZzZWdtZW50X2lkPTE1NDE0MyZ0ZT0xJnVzZXJfaWQ9YWE0OTFlZjdmMWQ5NjRlNDk3OWZiNzg0ZTc0ZTAxZDdXA255dEIKZZSpWpVl2RfT9VIbdHJpc3RyYW1iYWxkd2luOTBAZ21haWwuY29tWAQAAAAD) for the United States to make home care more accessible and affordable for the millions of children, adults and seniors living with disabilities. Barkan suffered from amyotrophic lateral sclerosis, or A.L.S.; over time, paralysis robbed him of the ability to walk, talk and even breathe on his own. And though he acknowledged that the disease could be horrendous to live with, he called his life “beautiful” — in no small part thanks to having 24-hour home care. More than two years later, this past November, [Barkan died](~/AAAAAQA~/RgRnd9-pP0TcaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyMy8xMS8wMi91cy9wb2xpdGljcy9hZHktYmFya2FuLWRlYWQuaHRtbD9jYW1wYWlnbl9pZD0zOSZlbWM9ZWRpdF90eV8yMDI0MDEwMyZpbnN0YW5jZV9pZD0xMTE1NzMmbmw9b3Bpbmlvbi10b2RheSZyZWdpX2lkPTc3Njc0OTUyJnNlZ21lbnRfaWQ9MTU0MTQzJnRlPTEmdXNlcl9pZD1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkN1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~). But his work to improve the lives of others has not dwindled. Millions of Americans still live without access to affordable home health care. An increasing population of seniors and a crisis in just compensation for caregivers means this problem will only get worse. Since Barkan’s essay was published, very little has changed. In an Opinion [guest essay](~/AAAAAQA~/RgRnd9-pP0TiaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMS9vcGluaW9uL2NhcmVnaXZpbmctYWxzLWFkeS1iYXJrYW4uaHRtbD9jYW1wYWlnbl9pZD0zOSZlbWM9ZWRpdF90eV8yMDI0MDEwMyZpbnN0YW5jZV9pZD0xMTE1NzMmbmw9b3Bpbmlvbi10b2RheSZyZWdpX2lkPTc3Njc0OTUyJnNlZ21lbnRfaWQ9MTU0MTQzJnRlPTEmdXNlcl9pZD1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkN1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~) this week, Barkan’s wife, Rachael Scarborough King, reminds us why this status quo needs to change, and emphasizes how this year’s election cycle provides an opportunity to galvanize elected officials into taking action. King demonstrates that legislative solutions to our caregiving system are both feasible and supported by constituents across the political spectrum. All that’s needed is a will to follow through on those calls to action — and there is no better time than the present. It is easy to see why King believes so strongly that we need to open up caregiving options to those who need them. Throughout her essay, she shows how the caregivers who were part of Barkan’s life became something like family to her. The beautiful life they made in spite of Barkan’s disease remains. King hopes more families caring for people with disabilities can share in this experience. “Far from disrupting our privacy, the caregivers and other friends and family who supported us through Ady’s illness allowed us to live in a more communal way — one that Americans often idealize while finding it difficult to achieve,” King writes. “Rather than living in a traditional nuclear family, my children live surrounded by many loving adults who contribute to their care.” [Read the essay:](~/AAAAAQA~/RgRnd9-pP0TiaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMS9vcGluaW9uL2NhcmVnaXZpbmctYWxzLWFkeS1iYXJrYW4uaHRtbD9jYW1wYWlnbl9pZD0zOSZlbWM9ZWRpdF90eV8yMDI0MDEwMyZpbnN0YW5jZV9pZD0xMTE1NzMmbmw9b3Bpbmlvbi10b2RheSZyZWdpX2lkPTc3Njc0OTUyJnNlZ21lbnRfaWQ9MTU0MTQzJnRlPTEmdXNlcl9pZD1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkN1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~) [[A zoomed in frame of an elderly person clasping hands with two other people. ] Rita Puig-Serra Costa](~/AAAAAQA~/RgRnd9-pP0TiaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMS9vcGluaW9uL2NhcmVnaXZpbmctYWxzLWFkeS1iYXJrYW4uaHRtbD9jYW1wYWlnbl9pZD0zOSZlbWM9ZWRpdF90eV8yMDI0MDEwMyZpbnN0YW5jZV9pZD0xMTE1NzMmbmw9b3Bpbmlvbi10b2RheSZyZWdpX2lkPTc3Njc0OTUyJnNlZ21lbnRfaWQ9MTU0MTQzJnRlPTEmdXNlcl9pZD1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkN1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~) [Guest Essay Caregivers Helped Us Be a Family. Everyone Should Have That Option. This year is a critical moment to make home care accessible to all Americans who need it. By Rachael Scarborough King](~/AAAAAQA~/RgRnd9-pP0TiaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMS9vcGluaW9uL2NhcmVnaXZpbmctYWxzLWFkeS1iYXJrYW4uaHRtbD9jYW1wYWlnbl9pZD0zOSZlbWM9ZWRpdF90eV8yMDI0MDEwMyZpbnN0YW5jZV9pZD0xMTE1NzMmbmw9b3Bpbmlvbi10b2RheSZyZWdpX2lkPTc3Njc0OTUyJnNlZ21lbnRfaWQ9MTU0MTQzJnRlPTEmdXNlcl9pZD1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkN1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~)[Continue reading the main story](#a11y-skip-universal-0) ADVERTISEMENT [Ad](~/AAAAAQA~/RgRnd9-pP0SXaHR0cHM6Ly9saXZlaW50ZW50Lm5ld3lvcmt0aW1lc2luZm8uY29tL2NsaWNrP3M9NTk3ODUmbGk9VFkmbT1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkNyZwPVRZXzIwMjQwMTAzJnRlPTEmbmw9b3Bpbmlvbi10b2RheSZlbWM9ZWRpdF90eV8yMDI0MDEwM1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~) Here’s what we’re focusing on today: Editors’ Picks [Guest Essay Waiting for Snow in the Netherlands The Elfstedentocht, the Dutch skating race through the 11 historic cities of Friesland, hasn’t been held in 26 years. But nobody can admit that it’s gone. By Benjamin Moser](~/AAAAAQA~/RgRnd9-pP0TeaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMy9vcGluaW9uL3Nub3ctZGVmaWNpZW50LWV1cm9wZS5odG1sP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~) [A painting of a wintry scene of a village gathered in the snow, everyone on skates.](~/AAAAAQA~/RgRnd9-pP0TeaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMy9vcGluaW9uL3Nub3ctZGVmaWNpZW50LWV1cm9wZS5odG1sP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~) More From Opinion [Patrick Healy and Katherine Miller Can She Do It? 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Young women say they’re more liberal, young men say they’re more conservative. How much does it matter? 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By Kathy Gannon](~/AAAAAQA~/RgRnd9-pP0TiaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMy9vcGluaW9uL3VuaXRlZC1zdGF0ZXMtYWZnaGFuaXN0YW4uaHRtbD9jYW1wYWlnbl9pZD0zOSZlbWM9ZWRpdF90eV8yMDI0MDEwMyZpbnN0YW5jZV9pZD0xMTE1NzMmbmw9b3Bpbmlvbi10b2RheSZyZWdpX2lkPTc3Njc0OTUyJnNlZ21lbnRfaWQ9MTU0MTQzJnRlPTEmdXNlcl9pZD1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkN1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~) [Concrete walls are decorated with Arabic writing and the outline of a map of Afghanistan. A watchtower stands behind the walls. ](~/AAAAAQA~/RgRnd9-pP0TiaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMy9vcGluaW9uL3VuaXRlZC1zdGF0ZXMtYWZnaGFuaXN0YW4uaHRtbD9jYW1wYWlnbl9pZD0zOSZlbWM9ZWRpdF90eV8yMDI0MDEwMyZpbnN0YW5jZV9pZD0xMTE1NzMmbmw9b3Bpbmlvbi10b2RheSZyZWdpX2lkPTc3Njc0OTUyJnNlZ21lbnRfaWQ9MTU0MTQzJnRlPTEmdXNlcl9pZD1hYTQ5MWVmN2YxZDk2NGU0OTc5ZmI3ODRlNzRlMDFkN1cDbnl0QgpllKlalWXZF9P1Uht0cmlzdHJhbWJhbGR3aW45MEBnbWFpbC5jb21YBAAAAAM~) [Guest Essay I Left My Faith. God Didn’t Flinch. Even though I am no longer observant, my religious upbringing is still essential to me. I love ancient Jewish texts and Orthodox deep cuts. By Temim Fruchter](~/AAAAAQA~/RgRnd9-pP0ThaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMy9vcGluaW9uL2xlYXZpbmctb3J0aG9kb3gtanVkYWlzbS5odG1sP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~) [A drawing that outlines a whole town in the style of a board game. At the center is a home, with a character walking in the front door.](~/AAAAAQA~/RgRnd9-pP0ThaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMy9vcGluaW9uL2xlYXZpbmctb3J0aG9kb3gtanVkYWlzbS5odG1sP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~)[Continue reading the main story](#a11y-skip-universal-0) ADVERTISEMENT [Ad](~/AAAAAQA~/RgRnd9-pP0SYaHR0cHM6Ly9saXZlaW50ZW50Lm5ld3lvcmt0aW1lc2luZm8uY29tL2NsaWNrP3M9MjAxODEyJmxpPVRZJm09YWE0OTFlZjdmMWQ5NjRlNDk3OWZiNzg0ZTc0ZTAxZDcmcD1UWV8yMDI0MDEwMyZ0ZT0xJm5sPW9waW5pb24tdG9kYXkmZW1jPWVkaXRfdHlfMjAyNDAxMDNXA255dEIKZZSpWpVl2RfT9VIbdHJpc3RyYW1iYWxkd2luOTBAZ21haWwuY29tWAQAAAAD) [letters Should Ukraine Consider an Armistice? Readers discuss actions the U.S. and Ukraine should take. Also: Rape of Israeli women; private equity firms; high housing costs; birds, not birdbrains.](~/AAAAAQA~/RgRnd9-pP0ThaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMi9vcGluaW9uL3VrcmFpbmUtcnVzc2lhLWFybWlzdGljZS5odG1sP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~) [A drawing of a dove, colored blue and yellow to resemble the Ukrainian flag, is on a damaged brick wall. It stands as if perching atop the damage.](~/AAAAAQA~/RgRnd9-pP0ThaHR0cHM6Ly93d3cubnl0aW1lcy5jb20vMjAyNC8wMS8wMi9vcGluaW9uL3VrcmFpbmUtcnVzc2lhLWFybWlzdGljZS5odG1sP2NhbXBhaWduX2lkPTM5JmVtYz1lZGl0X3R5XzIwMjQwMTAzJmluc3RhbmNlX2lkPTExMTU3MyZubD1vcGluaW9uLXRvZGF5JnJlZ2lfaWQ9Nzc2NzQ5NTImc2VnbWVudF9pZD0xNTQxNDMmdGU9MSZ1c2VyX2lkPWFhNDkxZWY3ZjFkOTY0ZTQ5NzlmYjc4NGU3NGUwMWQ3VwNueXRCCmWUqVqVZdkX0_VSG3RyaXN0cmFtYmFsZHdpbjkwQGdtYWlsLmNvbVgEAAAAAw~~) We hope you’ve enjoyed this newsletter, which is made possible through subscriber support. 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