The Biden administration is calling on Congress to expand access to home and community-based care services covered by Medicaid as part of a multi-billion dollar investment in the "care economy."
The proposal, part of a larger jobs and infrastructure plan unveiled by the White House Wednesday, asks Congress to put $400 billion toward expanding access to home and community-based care for the elderly and people with disabilities.
If acted on by Congress, it would represent one of the largest financial investments made in HCBS in a decade at a time when nursing home residents have disproportionately gotten sick and died of COVID-19.
Medicaid is the main payer for HCBS in the U.S., paying for services for about 5 million aging adults and people with disabilities.
"This would be a gamechanger in terms of service delivery for people with disabilities and aging adults," said Nicole Jorwic, senior director of public policy at The Arc, an advocacy group for people with intellectual and developmental disabilities. "It's frankly a long overdue recognition of these home and community based services — the fact that they're the alternative to these more dangerous, large congregate settings, and this is a recognition we need to invest and modernize the programs that fund these services."
Advocates have pushed for changes to the HCBS program for decades, arguing that the current structure of the Medicaid program favors institutionalizing aging adults and people with disabilities over caring for them in their homes and communities. That dynamic has been highlighted by the pandemic, which saw 34% of U.S. COVID-19 deaths occurring in nursing homes, according to the COVID Tracking Project.
Amy Gotwals, chief of public policy and external affairs for the National Association of Area Agencies on Aging, whose members coordinate and delier HCBS at the local level, said HCBS "prevents unnecessary healthcare spending that occurs when people don't get the help they need in their daily lives and their health and safety suffers."
"With our nation's aging population rising rapidly, it's vital that we increase the supply of options available in every community and state in the country," Gotwals said.
While every state must cover home health, which can include nursing services, medical supplies and equipment, state Medicaid programs are not required to pay for other services that help people live independently. What — and who — is covered varies greatly by state.
Most states impose caps on how many people are eligible for optional services during a given period. More than 800,000 people were on waiting lists as of 2018, most of whom have an intellectual or developmental disability, according to the Kaiser Family Foundation.
"Hundreds of thousands of people who need better care are unable to access it, even though they qualify under Medicaid. In fact, it can take years for these individuals to get the services they badly need," the White House plan reads.
Advocates caution that number doesn't include thousands of people who need those services but aren't on formal waiting lists for them.
Providing billions of dollars of funding to states could help move people off these wait lists and into home or community-based care, advocates say, which studies show can improve health outcomes and quality of life.
"This $400 billion investment would do a great deal in creating a bridge for states to start supporting all people with disabilities on waiting lists and continue to chip away at the over-reliance on institutional settings," Jorwic said.
The National Association for Home Care and Hospice called Biden's support "a monumental advance in the decades-long effort to provide full access to healthcare outside of an institution" and urged Congress to back the proposed changes.
Congress is expected to include the investment in HCBS in an upcoming infrastructure and jobs package. While the language hasn't been finalized yet, advocates expect the $400 billion to come through grants and an increased, long-term Medicaid match rate HCBS for states.
Advocates have pushed for that funding to be tied to specific conditions, like increased pay for workers, who are disproportionately low-wage women of color and targets that ensure access to HCBS is equitable across age, race and types of disability.
Eventually, advocates hope Congress will make Medicaid coverage of HCBS mandatory, with a baseline of required benefits being covered from state to state and no more waiting lists or caps on the number of people covered.
"The goal is to move in that direction where the majority of people can receive care and services they need in non-institutional settings," said Amber Christ, directing attorney of the Justice in Aging health team, which has been working with lawmakers on HCBS reform.
Vicki Hoak, executive director of the Home Care Association of America, said home and community-based services should be covered by Medicaid. noting that "For too many decades, home care has been viewed as an exception to the rule, requiring a waiver to have Medicaid pay for the service."
Biden's plan also calls for an expansion of the "Money Follows the Person" federal Medicaid program, which helps move nursing home residents back into their homes.
The White House argues an expansion of home and community-based services under Medicaid would also improve care for patients by improving wages for home health workers, many of whom are disproportionately women of color. Studies have shown increased pay for these workers leads to better health outcomes.
Even prior to the pandemic, there were shortages of direct care workers, ranging anywhere from 4% to 20% in 2018, according to a December report by LeadingAge and the LeadingAge LTSS Center at the University of Massachusetts Boston. Experts attribute those shortages to the sector's low pay and workplace demands.
Evan Reinhardt, executive director of the Indiana Assocaition for Home and Hospice Care, said that, in Indiana, "there are severe capacity issues because agencies simply do not have the staff necessary to cover all of those needing service." He atrributed that lack of staff to "poor reimbursement for services in the Medicaid space."
In 2018, about 12.6% direct care workers lived in poverty and 56.5% received some form of public assistance, according to the LeadingAge report. Home care aides made an average of $12.95 per hour in 2019. The report estimates that increasing the minimum wage for direct care workers would reduce turnover and improve quality of care because more experienced workers would remain in positions.
"The challenges of financing care for our aging population and for people with disabilities has been a longstanding issue for policymakers," said MaryBeth Musumeci, associate director for the Kaiser Family Foundation's program on Medicaid and the uninsured. "This proposal not only acknowledges the problems families face, but also the issues facing workers, both of which are hugely important but haven't gotten the needed attention."