If President Biden’s Build Back Better agenda passes, many long-term nursing home patients could get an amazing opportunity: living at home. But as Democrats negotiate to bring down the plan’s price tag, many worry that investments in home care — and the workers who provide it — will get cut.

“The more beds they fill in nursing homes, the more money there is to be made,” said El Paso disability rights organizer Josue Rodriguez at a vigil outside the U.S. Capitol to demand robust home care investments in the budget deal currently under negotiation in Congress.

For 24 hours, care workers, people living with disabilities, and others shared personal stories of how they are impacted by low wages and high costs of care. Vigil organizers also collected 10,000 written testimonies from affected people around the country about the need for improved care infrastructure.

Rodriguez, who has cerebral palsy, explained that the profit motive, combined with a misconception that so-called “fragile” people like himself can’t live 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.

The Build Back Better plan could change that. President Biden has proposed a $400 billion investment over 10 years to expand access to affordable home or community-based care. This would allow more aging and disabled Americans to stay in their own homes rather than expensive and potentially dangerous for-profit nursing homes.

But a few conservative lawmakers want to bring down that 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 800,000 people for these services.

The full Biden plan would also let home care workers bargain collectively to improve wages and benefits. 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. “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. 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.

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.

Meanwhile home care workers, who are unable to work remotely, 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 large corporations. But with a handful of conservative Democrats balking at the price tag, budget reconciliation negotiations are still raging on Capitol Hill.

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.”

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Rebekah Entralgo

Rebekah Entralgo is the managing editor of Inequality.org. This op-ed was adapted from Inequality.org and distributed by OtherWords.org.

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