The countdown has started. Robert Gould has 73 days before federal funding delays ruin decades of his institution’s work increasing knowledge and understanding of the Americans with Disabilities Act. 

“It’s sickening,” said Gould, a professor in the Department of Disability and Human Development at University of Illinois Chicago, and the director of research for the Great Lakes ADA Center. “So many people rely on and use our services. … It’s not a partisan issue, so it doesn’t make sense to me that these delays keep on happening.”

The Chicago-based ADA center is part of a national network of centers that provide services like a hotline where people can get help with everything related to the landmark disability law. Small business owners inquire about service dogs, employers ask about accessibility concerns — the calls pour in five days a week to help people with disabilities live a full life. Their funding runs out on Aug. 31.

Gould is not the only one. Hundreds of disability researchers across the United States worry about their jobs, and the future of their institutions as governmental delay in grant funding drags on several months behind schedule. These researchers are funded through National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), the only federal body focused on disability research. 

NIDILRR has $37 million allocated in federal funding to be issued as grants, and over 90% of those forecasted grants — totaling more than $34 million — have yet to be released. If they are not distributed before Sept. 30, the end of the fiscal year, it could eliminate scores of jobs and devastate essential programs that support individuals with disabilities and research about the disability community.

“We’re running out of time,” said Anjali Forber-Pratt, a former director of NIDILRR during the Biden administration.

The funding uncertainties are the latest example of the sweeping cuts and delays to health funding by the Trump administration. Earlier, in March, a STAT survey of more than 1,000 researchers funded by the National Institutes of Health found that labs are closing, early-career researchers are decamping for other fields, and scientists no longer trust the federal government as a scientific partner. 

Health secretary Robert F. Kennedy Jr. has also overseen a massive reduction in force across the Department of Health and Human Services that has increased delays in federal grantmaking. This has also been the case at the Administration for Community Living, the agency where NIDILRR is housed.

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“It feels like the research infrastructure of our country is crumbling,” said Kelsey Goddard, an assistant research professor at the the Research and Training Center on Independent Living at the University of Kansas.

NIDILRR is small, but its impact is real. It has funded research responsible for a suite of everyday features, including accessible voting machines and bathrooms on planes. Some of the largest grants include funding for ADA Centers that educate on incorporating the ADA into decisions such as accessible building construction, and Spinal Cord Injury Model Systems. 

The 18 U.S. Spinal Cord Injury Model Systems funded by NIDILRR have an expansive impact on direct patient care through emergency, rehabilitation, and outpatient services following a spinal cord injury, as well as programming to reintegrate patients into community living.

Delayed or eliminated funding would have severe impacts, including disruption of continuous data collection for the Spinal Cord Injury Database that has over 50 years of historical record. Data gaps would comprise “the statistical integrity of lifetime health-tracking models,” said Allen Heinemann, director of the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, which runs a 262-bed hospital in Chicago, and more than 30 locations across the Midwest that provide inpatient care, day rehabilitation, and outpatient services.

NIDILLR grants for research beyond the centers also have a major impact, such as Goddard’s work on the National Survey on Health and Disability, which has been used by over 100 other researchers and produced 37 research papers since its inception in 2018. 

The survey collaborates with many researchers around the country, but it primarily exists because of the institution, which is highly dependent on NIDILRR funding. “If I don’t have NIDILRR funding, I am effectively out of a job,” said Goddard.

Several steps have to occur for an institution to receive a grant, but typically the federal government forecasts the impending grants months to a year before the notice of funding opportunities are opened for applications. After institutions apply, their bids are reviewed by federal officials.  

Currently, NIDILRR has only released seven grants out of 80 potential awards. If the federal government were to release these grants next week, the delays would still wreak havoc. Institutions are often collaborating with other universities, cities, and organizations, a process that takes weeks or months. That’s why federal notices of funding opportunities are typically open for 60 days, per HHS policy. A grant for research into products generated by small businesses that would improve the lives of people with disabilities was estimated to be released on Jan. 7, with an estimated application due date of March 9, yet it remains unopened. 

Even for grant renewals — like the renewal Gould’s Great Lakes ADA Center needs to stay open — the grant language is similar from year to year but rarely a copy-and-paste situation.

After the submission period closes, grants then undergo peer review from experts in the field. NIDILRR, unlike other health agencies, does not have a standing peer review panel, which can stretch out review timelines even further. Once scored, grant applications are passed back to NIDILRR for the program officials to review and provide final determination for what will be funded before the grant is awarded. 

“It is not like Venmo. It is 0% instantaneous,” said Forber-Pratt.

The entire process from posting the grant for applications through awarding the funds takes a minimum of two to three months in the best of circumstances, said Jae Kennedy, president of the Alliance for NIDILRR Grantees and a professor of health and disability policy at Washington State University.

A federal health spokesperson said that NIDILRR is “reviewing all grant opportunities” and will award the full $37 million appropriated for its grant programs in 2026. They did not say why the grants are delayed.

“A funding failure dismantles the engine of discovery for researchers while dimming the horizon for a healthier, more independent future for patients,” said Heinemann.

The funding delays can feel existential for the many disability researchers who are also disabled. Goddard is a wheelchair user and worries about what will be available for her if her institution folds. 

“If these jobs are going away for disability researchers, I’m super limited in what I’m going to be able to do. I have a 3-year-old son right now, and I’m actually the primary earner for our household,” she said. “How are we gonna pay our bills? How are we gonna support our son?”

STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.