Disability service providers across the nation are cutting back their offerings, turning away new clients and struggling to maintain quality and advocates say the situation is poised to get worse.

A survey of 581 providers of community-based services to people with intellectual and developmental disabilities shows that nearly all are facing staffing shortages.

As a result, 77% of providers said they are refusing or no longer accepting referrals and 44% have discontinued various offerings. Moreover, 60% said that they’re considering closing additional programs or services.

The fourth annual survey comes from the American Network of Community Options and Resources, or ANCOR, which represents disability service providers nationally. The latest survey was conducted over a four-week period beginning in September 2023.

The findings largely illustrate trends that have persisted in recent years as the industry has struggled to attract people to low-paid and difficult direct support professional positions while less-demanding fast food and retail opportunities dangle higher wages.

“Providers want to offer better compensation in order to attract more direct support professionals and retain the ones they have, but decades of underinvestment in the Medicaid program has left them powerless to raise wages to a competitive level without reducing services and shuttering programs at the same time,” said Barbara Merrill, CEO of ANCOR. “(Community providers) simply can’t support people if they lack the qualified staff to do so.”

About three-quarters of providers said they have delayed the launch of new programs and services and nearly the same number indicated that they are having trouble meeting quality standards. More than half of the providers surveyed said they operate in areas where few — if any — provide similar services.

Among people with developmental disabilities who are able to access services, ANCOR found that pressures on the industry are forcing individuals to live farther from their communities, putting them at greater risk of hospitalization and institutionalization.

Even still, officials with ANCOR note that the situation could be even more dire. Currently, providers are leaning on significant extra federal funding from the American Rescue Plan, a $1.9 trillion COVID-19 relief package passed in 2021. The Biden administration said in December that the federal government has distributed $37 billion to states for Medicaid home and community-based services under the law, most of which is going toward retaining, expanding and training the direct care workforce, but the money must be used by March 2025.

“As our report starkly illustrates, the wind down of temporary pandemic relief funding could prove devastating for community providers and presents an imminent threat to the people with IDD they serve,” said Lydia Dawson, senior director for government affairs at ANCOR. “Immediate legislation is needed to stabilize the DSP workforce, ensure home and community-based services remain sustainable and available to people with IDD, and to guarantee the right of people with disabilities to live in fully inclusive communities.”

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