Disability service providers across the nation are in crisis, with a majority reporting that they’re shutting down programs, turning away new referrals and struggling to maintain standards.

A survey out this week of 449 organizations that provide services to those with intellectual and developmental disabilities paints a dark picture of the current state of the industry a year and a half into the COVID-19 pandemic.

Of those surveyed, 58% of providers said they’re discontinuing programs or services, 77% are turning away new referrals, 84% are delaying the launch of new offerings and 81% said they are struggling to achieve quality standards. Meanwhile, 40% of providers said they’re seeing higher frequencies of reportable incidents.

“This is the first time since the deinstitutionalization movement that we are actually going backwards,” said Barbara Merrill, CEO of the American Network of Community Options and Resources, or ANCOR. The organization, which represents disability service providers across the nation, conducted the survey during a five-week period starting in August.

“Programs are being closed, people aren’t taking new referrals. We’re getting concerned that people are going to be moved to larger settings. We’ve never seen anything like it,” Merrill said.

Insufficient staffing is at the root of most of the problems providers are experiencing, according to the ANCOR report. The industry has long struggled to attract and retain direct support professionals, but that situation has only gotten worse. Nearly 93% of providers surveyed said that “industries that previously paid comparable wages now pay employees more than my organization can afford to pay” while 86.2% said that the pay for direct support professionals is less than what people can receive from unemployment and other government safety net programs.

And there’s not much that providers can do about the situation since their pay rates are largely determined by the reimbursement they receive from Medicaid.

As a result, the disability service provider industry is “extraordinarily fragile and beginning to break down,” Merrill said, and that means families and people with disabilities aren’t getting what they need.

“Services aren’t being staffed at the levels that they need to be staffed to be safe and to allow people to experience the community,” Merrill said. “We’re concerned about basic human safety here. That’s why providers are moving to close and consolidate programs. They’re not going to run programs where people aren’t safe.”

The survey is just the latest ANCOR has conducted of member organizations to assess how they’re faring. Even before the pandemic, providers were struggling to maintain or expand services and keep up standards, but since COVID-19 emerged, circumstances have worsened by nearly every metric, ANCOR said.

The latest data comes as Congress continues to weigh President Joe Biden’s plan to inject $400 billion in the nation’s home and community-based services system. Most recently, lawmakers in the U.S. House of Representatives shrunk the proposal to $190 billion, a figure that disability advocates say is inadequate to address the massive waiting list for services and the needs of the direct support professional workforce.

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