I am angry—angry that Fair Pay for Home Care was not fully funded in New York’s budget in January 2022. And angry that the small pay increase that was approved won’t solve New York’s severe shortage of home care workers. This crisis has forced me to go without much-needed assistance every weekend. I have found myself in the hospital twice because of a lack of care. I need home care because I’m a 32-year-old disabled person with Spinal Muscular Atrophy Type 2.
I can’t live without home care workers. They help me get washed up, dressed, and into my chair. They clean my home, travel with me, and so much more. Without them, I’d be forced to return to a nursing facility; I fought hard to get out of there—for good reason.
Living in an institution was traumatic; I had no autonomy. I needed to live according to their schedules and policies. I witnessed violence, abuse, and neglect towards disabled people on a regular basis. I advocated fiercely for home- and community-based services, long term services, and support. Now I find that those resources are being ripped from under me like a rug, and I’m falling.
I’m not alone. There are many thousands who can’t find or keep care workers. According to “The Case for Investment in Higher Pay for New York State Home Care Workers,” a report by CUNY Graduate Center’s School of Labor and Urban Studies, “a 2018–2019 statewide survey of home care agencies found that, on average, 17 percent of home care positions were left unfilled due to staff shortages.” The reason? They only make $13.20 an hour, not enough to live, let alone thrive. New York’s budget raises this rate by only $2 an hour starting in October 2022, then another measly $1 the following year.
This is not right—they deserve better wages. The labor that care workers perform is essential, but I can’t find home care workers willing to accept a poverty wage. And I don’t blame them. Fair Pay for Home Care would have raised their pay to $22.50 an hour. The State Senate and the State Assembly said yes; Governor Hochul said no. I am outraged for them.
This problem is not going away. The home care shortage has worsened exponentially during the pandemic. The previously mentioned CUNY report emphasizes: “In a Fall 2020 survey, 85 percent of participating New York State home care agencies reported worsening staff shortages. As a result of these staff shortages, many individuals with unmet home care needs experience hospitalizations that might otherwise be unnecessary. Furthermore, many enter nursing homes—a costly alternative to in-home care that became especially dangerous during the COVID-19 pandemic.” Home care workers were struggling before March 2020. They’ve struggled to pay their bills, feed their families, and afford transportation. Many are on public assistance as a result. Our social safety nets—like SNAP, TANF, Medicaid, and others—are important additions to the tapestry of any government that claims to care for its citizens. However, those working for private companies (or the government) shouldn’t have to rely on them for the basic necessities of life. The just thing to do is for home care workers’ employers to pay them what they deserve. Otherwise both they, and the disabled and elderly people for whom they care, regularly fall through the cracks of a broken net.
In fact, I almost ended up back in a nursing facility. When I was hospitalized two separate times due to a lack of access to home care aids, I wasn’t sick; I just didn’t have anyone that could provide care for me. In an unconscionable situation like this, hospitals are my only choice.
This is my plea: listen to disabled and chronically ill people, especially those of us who require home care. Learn about the history of our treatment in this state, country, and around the world. Use that knowledge to advocate on our behalf when we ask you to, as I do now. Support the workers who support us—not just for us, but because we can’t win in isolation. We all deserve what we need to thrive.
Jensen Caraballo (he/him) is a disability rights activist and writer. His work has been featured at The Center for Disability Rights and Not Dead Yet. He is a 32-year-old Queer and Disabled person of color born in Guayama, Puerto Rico. Jensen is passionate about dismantling ableism and firmly believes that all lives are worth living with dignity and respect. You can follow him on Twitter and Instagram.
Thank you, Jensen, for this incredibly written and sourced post. My BIL is in a similar situation in a different state, and you articulated it so well. His trips to the hospital and ER are often caused by lack of basic care at home that he can’t provide himself.