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The shortage of direct care workers, who provide home care services, is “the single greatest barrier” to people with intellectual and developmental disabilities (IDD) accessing long-term supports—and it’s “damaging the structural integrity of the community-based services system,” a new report suggests.
The findings come from United Cerebral Palsy (UCP) and the American Network of Community Options and Resources (ANCOR) Foundation’s “The Case for Inclusion 2023,” a report that examines the state of services for people with IDD and warns that the direct care system is nearing collapse.
UCP President and CEO Armando Contreras and ANCOR CEO Barbara Merrill wrote in a letter introducing the report that “people with IDD are increasingly unable to access the services they need,” with many providers (83%) “turning away new referrals and discontinuing existing services due to a lack of staffing.”
They called for immediate, decisive action “to stem the tide of growing instability,” with the report recommending a series of state and federal policy changes to improve the direct care workforce (which includes certified nursing assistants, home care aides, and others) and access to home- and community-based services—ranging from grant programs to train, recruit, and retain direct support workers to expanding visa opportunities.
Failure to act could force those with IDD to rely on family caregivers, be hospitalized or placed in institutional settings, or even end up homeless, Lydia Dawson, ANCOR’s director of policy, regulatory, and legal analysis, told Healthcare Brew.
“It could mean anything for any individual person based on what’s available to them,” she said. “But it ultimately, in any case, decreases their availability of choice and decreases their ability to experience community integration.”
Demand for workers to provide home- and community-based services is expected to increase 37% by 2030, with almost 8 million new job openings, according to estimates from PHI, an organization that researches and promotes the direct care workforce. Mercer, meanwhile, estimates that the US will have a shortage of 446,300 home health aides by 2025.
For years the industry has reported challenges in hiring and retaining home care workers due, in part, to low hourly pay—often at or slightly above minimum wage amid “stagnant” Medicaid reimbursements—and high turnover rates. The Covid-19 pandemic, which sparked workforce shortages across the healthcare industry, has only exacerbated those issues, Dawson said.
For example, 63% of community providers said they discontinued programs or services in the last year due to high job turnover and vacancy rates—an 85% increase from the early days of the pandemic, the UCP/ANCOR report noted. And more than half of respondents were considering new or additional discontinuations.
With the direct care workforce primarily composed of women, people of color, and, increasingly, immigrants, the report further warned that failure to properly invest in those workers, “is a decision to perpetuate inequities.”
“This is a crisis that has been building for decades,” Dawson said. “But this is not something that can be treated with a Band-Aid.”