On a recent visit with research participants for my book on spousal caregiving, I sat with a man who had a stroke three years ago, at age 59. He can only use one side of his body, rendering him unable to work; his wife serves as his caregiver. He told me about how much he hated himself. All I do is take resources. I dont contribute anything. Tears streamed down his cheeks.
President Bidens signature Build Back Better bill, which includes funding for long-neglected social programs like Medicaids home and community-based services (HCBS), is facing an uncertain future. An upgraded HCBS program would allow millions of people currently stuck on wait lists to receive care at home, rather than in congregant settings. But facing questions from the likes of Sen. Joe Manchin (D-WV) about cost, the new investments in HCBS may not become law.
What my research participant made clear to me that day is that the lack of robust and accessible social programs for long-term care is merely a symptom of a deeper, more poisonous problem: Disability is a part of life, and we hate it. Literally.
Heres what we dont talk about when we talk about the care crisis. When it comes to disability, we devalue care (both caregiving and paid care work) because we devalue the people who need it. Its why we position care as a response to a horrible disaster. Its why we refuse to adequately fund home care and fairly pay care workers. Its why we rely on the 53 million (and climbing) unpaid family caregivers across the U.S. to provide care for free. Its why disabled people internalize the idea that they are worthless takers. We tell people we dont care about them when we refuse to provide the means for them and those who care for them to live well.
Euphemisms like silver tsunami let the idea of disaster stand in for disability.
In the lead-up to the BBB bill, there have been many conversations about our nations care crisis. If we look closely, our disdain for disability and the lengths well go to to avoid talking about it begin right there. If talked about at all, disability is often safely disguised as an elder care disaster, encapsulated by the phrase silver tsunami, which refers to demographic changes in the U.S. By 2040, 80.8 million baby boomers will be over 65. This is more than twice the number of people over 65 in 2000. Since the prevalence of disability rises with age, approximately 70 percent of this cohort is predicted to need long-term care.
While its true that rates of disability rise with age, and these numbers are indeed daunting, the silver tsunami framing suggests disability is somehow only for, or synonymous with, the elderly. But according to the Centers for Disease Control and Prevention, 26 percent of U.S. adults live with a disability; 6 in 10 have a chronic condition; and 4 in 10 have two or more.
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Incidentally, Joe Manchins state of West Virginia has the highest rate of people with disabilities in the nation, according to West Virginia Universitys Center for Excellence in Disabilities. While 39 percent of adults in West Virginia live with a disability, that includes about 1 in 7 West Virginians under the age of 65.
Across the country, HCBS recipients are heterogeneous. The mean age is 56, and less than half of recipients are over 65. People of all ages live longer with more chronic conditions because of medical technologies. Disability is everywhere, but we cant talk about it plainly. Instead, we use elder care as a stand-in. But this population doesnt need care because of age; they need care because they acquire disability.
More importantly, euphemisms like silver tsunami let the idea of disaster stand in for disability. This makes disability seem deviant, cast as a dreadful catastrophe. It also suggests that millions of people aging, many of them into disability, portends disaster. But isnt it a profound success that we are living longer? Disability is, was, and always has been inevitable for most people as we age. Yet we havent figured out how to embrace this almost ubiquitous reality in a way that maintains a sense of value and self-worth. Instead, nearly everyone faces it and yet is wholly unprepared for it, at the same time.
The care crisis is also regularly framed as a labor issue, which is most certainly true. Home care jobs are some of the lowest-paid jobs that exist, with the highest turnover rates. And yet the Bureau of Labor Statistics predicts demand to far outpace other occupations over the next decade.
When we talk about this, we correctly talk about how care work is devalued because its seen as womens work. The home health aide workforce is no exception; it is almost entirely made up of women, the majority of whom are women of color. Racism is built into our care infrastructure. When Roosevelts New Deal was passed in 1933, domestic and farmworkers were specifically excluded from labor protections precisely because these were jobs that were largely filled by people of color, and Southern Democrats wouldnt vote to improve the circumstances of a Black workforce. Many of these exclusions still apply.
Any disabled person or caregiver will also tell you about the contempt they experience in our systems of care. To convince the Social Security Administration, the agency that processes claims for disability, you have to hire a lawyer and brace yourself for the demoralizing process of being evaluated. More than 60 percent of all cases are denied. While fraud is extremely rare, fear of the disability conthe suspicion that disability claims are full of fakersremains rampant.
Meanwhile, getting access to the only publicly funded home care in the U.S., Medicaids long-term services and supports (LTSS), is extremely difficult. Most states require recipients to drain nearly all of their financial resources to become eligible, and even then there are nearly a million people on wait lists. Thats what the HCBS funding in Build Back Better is designed to address, if Sen. Manchin will allow it.
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As I listened to the man in my study talk about his worthlessness, I thought about the ways we subtly and overtly communicate that we dont value disabled people. He was responding to all the messages surrounding him, reinforcing the notion that disability is a disaster, that being disabled suddenly makes him suspect and contemptible. So while funding home care is of utmost priority, we also have a deeper cultural crisis that funding alone cant fix. The crisis is not that more people need more care. The crisis is our refusal to value disabled people and, by extension, value the people who care for them. The disaster is not disability. The disaster is in not planning for it, talking about it, or putting policies in place to adequately address it when it inevitably occurs.