Congressional Democrats on Thursday unveiled a bill that would significantly expand access to services that help seniors and people with disabilities receive care in their homes and communities, following up on President Joe Biden's demands for such an investment in an infrastructure bill.
The proposal, sponsored by Sen. Bob Casey (D-Pa.), Rep. Debbie Dingell (D-Mich.) and high-ranking House and Senate Democrats, including Senate Majority Leader Chuck Schumer (D-N.Y.), would offer increased Medicaid funding for states offering home- and community-based services (HCBS) if they agree to certain conditions. Democrats are planning to include the proposal in a forthcoming budget bill that only needs 50 votes to pass the Senate.
"I will work tirelessly with President Biden and my colleagues in Congress to get this proposal signed into law," Schumer said.
Across the country, more than 800,000 people—mostly people with disabilities—are on wait lists for HCBS services covered by state Medicaid programs, though advocates say the unmet need is likely far greater.
"We can't tolerate that. That's not consistent with American values," Casey told reporters Thursday.
Dingell likened the magnitude of the proposal to the creation of the Social Security program in the 1930s.
"This is the best chance in a generation to address these problems that need to be addressed," she told Modern Healthcare.
Under the proposal, states would have to opt in to the program to receive a 10 percentage point increase in the federal Medicaid match that must go to expanding HCBS and improving wages and benefits for direct-care workers. That could mean moving people off of waiting lists or, in states that don't have waiting lists, expanding access to services in another way.
States would have two years to develop plans that HHS must approve. In the meantime, states will continue receiving the enhanced Medicaid funding offered for HCBS through the last COVID-19 relief bill—called the American Rescue Plan—so there isn't a gap in funding.
Overall, states would have flexibility to tailor their HCBS programs to their communities as long as they meet certain requirements , like covering personal care services for all eligible populations.
Currently, personal care services, which help people with activities of daily living, are optional for states to cover, with 34 offering it.
HCBS advocates argue this creates an institutional bias in Medicaid with people who can't pay out-of-pocket for personal care ending up in nursing homes.
"Millions of older Americans living at home need care and services—from help getting in and out of bed, to bathing, and eating meals," said Katie Smith Sloan, president and CEO of LeadingAge, the national association of more than 5,000 not-for-profit aging services providers. "Providing access to home and community-based services could be a game-changer that helps older adults get high-quality care and lead independent lives at home."
States accepting the money would also have to expand access to behavioral health services and coordination with housing, transportation and employment supports and provide supports to family caregivers, including respite care.
The program would also come with several workforce requirements aimed at improving wages and benefits for direct care workers who make an average of $12 an hour in the U.S. and are more likely to be women and people of color.
States would need to update payment rates for workers at least every two years through a "transparent process" that elicits feedback from stakeholders and ensure any increases are passed through to workers.
States could lose the funding increase if they can't show increased use and availability of HCBS and improved wages for workers.
"The goal here is to have the best home-and-community based services in the world," Casey said.
Separately, states could get additional funding if they agree to create a registry of direct-care workers. Registries can help organizing efforts. That would come with a neutrality requirement that the money not be used by employers to fight for or against unionization.
The push for expanded access to HCBS follows a dangerous year for nursing home residents, with thousands dying of COVID-19. Advocates argue the pandemic highlighted the need to ensure people who can live at home with additional assistance have the opportunity to instead of being sent to nursing homes.
Casey said the goal is also to include the HCBS expansion in a budget reconciliation bill Democrats are crafting that is expected to follow a bipartisan infrastructure bill. Reconciliation allows the party controlling the Senate to pass partisan bills without support from the minority. A reconciliation bill can't be filibustered and only needs 51 votes to pass.
Democrats have 50 seats in the Senate but Vice President Kamala Harris can break ties.
The reconciliation bill is expected to include several of the priorities Biden laid out in this jobs and "families" plans that aren't supported by Republicans, including a number of healthcare provisions like permanently expanding Affordable Care Act (ACA) subsidies to middle-income earners.
"I want to get as much of that done as possible through reconciliation," Casey said.
He added that his HCBS policy has the support of all 50 Senate Democrats but he may have to engage with some members of the caucus on the dollar amount of the investment.