The U.S. Congress is at a critical juncture in the negotiations on the Build Back Better reconciliation bill. The original proposal was for $3.5 trillion in new spending—paid for by tax increases on corporations and those making more than $400,000 annually—aimed at improving infrastructure. Of this, $450 billion was earmarked for an increase in Medicaid home and community-based services (HCBS).
The proposed $210 billion cut is not inconsequential: It could be the difference between whether more people are able to receive life-saving medical treatment or not.
These services, such as meal delivery, respite, and other care services, are essential to improving the lives of people with disabilities, those who are aging, and their care providers. But after mostly leaving the fray to moderate and progressive Democrats to battle out a compromise, President Joe Biden unveiled an updated outline for the bill on October 19. Bowing to centrist concerns, Biden’s version of the plan is now down to between $1.75 trillion and $1.9 trillion, and the cuts have caregivers (and receivers) concerned.
Since February, progressive Democratic legislators have been pushing Biden to make good on his campaign promise to increase Medicaid funding for HCBS. In March, Senators Maggie Hassan, Democrat of New Hampshire; Sherrod Brown, Democrat of Ohio; and Bob Casey, Democrat of Pennsylvania; and Representative Debbie Dingell, Democrat of Michigan, introduced the Home and Community-Based Services Access Act.
Within weeks, Representatives Dingell; Ayanna Pressley, Democrat of Massachusetts; Conor Lamb, Democrat of Pennsylvania; and Pramila Jayapal, Democrat of Washington, sent Biden a letter signed by 107 of their colleagues calling for the $450 billion investment in these service to be added to the Build Back Better infrastructure package.
Following the Senate vote, more than forty-five national disability organizations sent a plea to House and Senate leadership further explaining the imperative of full funding. Unfortunately, last month the House committees with purview over Medicare—Ways & Means and Energy & Commerce—endorsed increasing Medicaid HCBS funding by only $190 billion instead of the $400 billion advocated by caregivers and progressive legislators.
That proposed $210 billion cut is not inconsequential: It could be the difference between whether more people are able to receive life-saving medical treatment or not.
This funding would expand access to long-term care under Medicaid. It would also address the institutional bias in Medicaid that encourages putting people who need daily assistance in long-term care facilities instead of allowing them to live among family and friends in their own homes.
“Caregivers are needed because everyone needs care . . . we’re essential to the economy and the key to economic recovery in this country.”
As The Arc, a national advocacy organization for people with intellectual and developmental disabilities, explains, “The current Medicaid system is set up to always pay for nursing homes and institutions, but home and community-based services are ‘optional.’ That is why people with disabilities are often stuck waiting for years to access the services they need.”
And that waiting list? In 2020, it was more than 820,000 people long—for an average wait time of thirty-nine months—and disproportionately made up of people of color and people living in poverty.
The coronavirus pandemic has made the situation even more dire. As Senator Tammy Duckworth, Democrat of Illinois, recently expressed, “Seniors and people with disabilities who have already been disproportionately impacted by the deadly pandemic should not be forced to abandon their home services for group settings.”
Women, people of color, and immigrants also make up an unequal proportion of (paid and unpaid) caregivers. The proposed funding would increase the pay of these caregivers, or direct support professionals—a workforce in crisis as workers are underpaid and overworked, with turnover rates of more than 50 percent annually.
Ai-jen Poo, executive director of Caring Across Generations and the National Domestic Workers Alliance, says “Increasing wages for care workers will ensure that they can care for themselves and their own families. Increasing wages will also make care work more sustainable in the long run and ensure a more robust workforce that can meet the rising demand for these services.”
As the number of people caring for children and seniors grows, so does the need for in-home caregiving. These caregivers, referred to as the “sandwich generation,” account for one in seven middle-aged adults.
The most consistent pressure for increased funding for HCBS has come from those who depend on the services. On October 6 and 7, Care Can’t Wait, a coalition of disability rights, labor, health, aging, and caregiving groups, held a twenty-four-hour storytelling vigil at the U.S. Capitol to urge Congress to pass the bill with maximum HCBS funding.
And on October 21, caregivers and caregiving advocates were joined by House Speaker Nancy Pelosi; Senators Casey; Kirsten Gillibrand, Democrat of New York; Patty Murray, Democrat of Washington; and Ron Wyden, Democrat of Oregon; Representatives Dingell; Rosa DeLauro, Democrat of Connecticut; Sara Jacobs, Democrat of California; and other legislators at another Capitol event. Sponsored by the Care Can’t Wait Coalition, Moms Rising, and others, the event highlighted personal stories demonstrating the urgent need for a robust care infrastructure and increased funding for HCBS.
The tone of the October 21 event was resolute. Speakers and attendees alike were not shaken by talk of a smaller Build Back Better package. Declarations of “We are winning!” were followed by chants of “Care Can’t Wait!”
Georgia mother and caregiver Sheree Holloway spoke unwaveringly with her daughter Victoria by her side: “Caregivers are needed because everyone needs care . . . we’re essential to the economy and the key to economic recovery in this country. The domestic worker movement understood that when we turned out to vote in 2020. We voted for care and we delivered in a big way.” She went on to express how important the plan would be for Black and brown women, saying, “We did our job. Now we need Congress to hold the line and do theirs.”
With the October 31 deadline looming, Congress and President Biden must be held to account for increasing funding for these life-sustaining services.