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“The more beds they fill in nursing homes, the more money there is to be made,” said disability rights organizer Josue Rodriguez at a vigil outside the U.S. Capitol to demand increased investment in alternatives to institutionalized care.
Rodriguez, who has cerebral palsy, explained that the profit motive, combined with a misconception that so-called “fragile” people like himself are incapable of living normal lives, has led to severe underfunding of home and community-based services for the elderly and disabled.
“They’d rather have us locked up in nursing homes,” he said.
Rodriguez traveled to Washington from his home in El Paso, Texas, for a 24-hour vigil on October 6-7 to demand robust home care investments in the budget deal currently under negotiation in Congress.
As part of his Build Back Better agenda, President Biden has proposed a $400 billion investment to expand access to affordable home or community-based care. This would allow more aging and disabled Americans to stay in their homes rather than having to move into expensive and potentially dangerous for-profit nursing homes. The plan would also allow home care workers the ability to bargain collectively to improve wages and benefits.
The vigil focused on defending this historic care infrastructure plan in the face of pressure from some Democratic lawmakers to reduce the Build Back Better plan’s overall price tag. A draft House bill allocates $190 billion for home and community-based services, which advocates say is not enough to eliminate the current waiting list of an estimated 800,000 people for these services.
A wide range of care advocacy groups, including the ACLU, American Disabled for Attendant Programs Today (ADAPT), Care Can’t Wait Coalition, Caring Across Generations, Justice in Aging, SEIU, and National Domestic Workers Alliance, organized the vigil to center the voices of those who would be most impacted by historic investments in the care economy. For 24 hours, care workers, people living with disabilities, and other directly impacted individuals shared their personal stories of how they are impacted by low wages, high costs of care, and lack of resources.
Vigil organizers also collected 10,000 written testimonies from affected people around the country about the need for improved care infrastructure. Home care champion Senator Bob Casey (D-Penn.) appeared at the event to accept the stories, promising to deliver them to fellow lawmakers.
Vigil participants made clear that the welfare of care workers and the welfare of those who need care are inextricably linked.
“I believe it is my purpose to help people to stay in their homes,” said Celia Corona, a home care worker of over 15 years, at the vigil. “I don’t want them to be in nursing homes. When people are in their own homes they are independent and thrive. And for us care workers, we need to get a wage that is livable so we can provide that care. I believe in the Build Back Better plan and we are going to fight until it is right.”
Home care workers currently earn on average just under $17,000 a year and one in six live below the poverty line.
“One of the reasons I believe we need the Build Back Better plan is if you want someone working for the job, make the job worth it for them,” said John Coley, a home care worker from Illinois who joined the industry after his brother was diagnosed with an illness that required home care services.
Increasing wages for these workers would have a positive impact on racial and gender wealth inequality, as over 90 percent of U.S. home care workers are women, more than half are women of color, and 31 percent are immigrants.
The Covid-19 pandemic has increased awareness of the yawning gaps in the nation’s care infrastructure. With school closures and nursing homes becoming hotbeds for infection, caregiving responsibilities were outsourced to others, in particular women and mothers, resulting in a “she-cession” of women leaving the workforce. Home care workers, who are unable to work from home, put their lives on the line each day to care for others.
President Biden’s Build Back Better agenda could be fully paid for through increasing taxes on billionaires and other wealthy Americans and large corporations. But with a handful of conservative Democrats balking at the price tag, budget reconciliation negotiations are still raging on Capitol Hill. Meanwhile, care workers, for their part, are continuing to remind us that a stronger care infrastructure would benefit everyone.
“We aren’t just talking about people with disabilities,” said Patricia Evans, a home care worker from Chicago. “We all will need care. Everyone deserves compassion, and Build Back Better has the funding to allow us to do that.”
Rebekah Entralgo is the managing editor of Inequality.org. You can follow her on Twitter at @rebekahentralgo.