Disability service providers across the nation are struggling to maintain their offerings, with many reporting that they are turning away new referrals and discontinuing programs and they’re concerned that it could get worse.

A survey released this week finds that 90% of providers serving people with intellectual and developmental disabilities have faced moderate or severe staffing shortages in the last year. As a result, 69% said they had declined new clients and 39% indicated that they shuttered programs or services. More than a third said they were considering additional program cuts.

The findings come from an annual survey conducted by the American Network of Community Options and Resources, or ANCOR, which represents disability service providers nationally. It is based on responses from 496 community-based services providers in 47 states and Washington, D.C., more than half of whom indicated that they serve areas where there are few or no other options.

When forced to make cuts due to staffing challenges, 37% of providers said that they had eliminated residential habilitation services and nearly a third cut back on home-based and day habilitation services or employment supports.

The survey findings suggest that the situation is having a very real impact on people with developmental disabilities with nearly 6 in 10 case managers indicating that they had difficulty connecting people to services and almost half of providers saying that they are seeing reportable incidents more often as a result of staffing shortages.

Despite the dire picture, however, officials with ANCOR say that many of the metrics actually represent “modest improvements” over the results from last year’s survey. They attribute the gains in part to $37 billion in federal COVID-19 relief funding in recent years for Medicaid home and community-based services, much of which was directed toward wage increases for direct support professionals who assist people with disabilities living in the community. But, that money must be used by March 31, 2025 and it’s unclear how states and providers will maintain any pay bump after that point.

“While it is encouraging to see a decrease in the percentage of program and service closures due to insufficient staffing, we remain deeply concerned that a lack of legislative action will render this fragile progress temporary,” said Barbara Merrill, CEO of ANCOR. “We have already heard countless stories from providers who are extremely concerned about their state’s ability to bridge the gap that will be left, and how they will recruit direct support workers in their state when they are already struggling to compete with the private sector.”

Meanwhile, there are broader worries about what the future of Medicaid could look like amid reports that newly empowered Republican leaders in Washington are considering changes to the program.

“The stakes could not be higher for individuals with intellectual and developmental disabilities who depend on Medicaid home and community-based services,” said Lydia Dawson, vice president for government relations at ANCOR. “Particularly in light of the funding shortfalls service providers are already facing this year, any further cuts to community-based services — whether directly at the federal level or in other areas that put pressure on states to slash their Medicaid investments further — would be devastating.”