The National Research Center for Parents with Disabilities, the only federally supported research institution dedicated to the needs of parents with disabilities in the United States, is set to begin phasing out operations as its current funding grant ends Monday. The center, headquartered at Brandeis University’s Heller School for Social Policy and Management, has received federal support for three decades, primarily through a competitive grant that recently provided around $500,000 annually.

The center’s work spans multiple universities and focuses on addressing challenges faced by the estimated 4.5 million parents with disabilities across the country. It conducts research on issues such as healthcare access, economic hardship, and state laws affecting these parents, serving as a national clearinghouse for information and supporting advocacy efforts.

Monika Mitra, the center’s director, said the funding discontinuation came unexpectedly. While a preliminary notice about the grant was posted over a year ago, the detailed application information—which usually becomes available by February—never materialized this year. By July, the initial grant announcement had disappeared entirely. Efforts by center staff to clarify the situation with the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR), the primary federal agency overseeing disability research, went unanswered for several months.

In a letter reviewed by The New York Times, Kristi W. Hill, an official at NIDILRR, confirmed that the grant funding had been eliminated. Hill emphasized that this decision should not be interpreted as a diminished importance of research related to parents with disabilities or their families. She acknowledged concerns connected to the termination but noted the need for the institute to periodically reassess its investment priorities and make difficult funding decisions.

This development comes amid a broader context of actions by the Trump administration that have raised concerns among disability advocates. In June, the Justice Department’s Office of Legal Counsel issued a memorandum suggesting that states are not obligated to provide home-based services to people with disabilities, potentially leading to more institutionalization. Additionally, plans were announced to transfer special education and civil rights enforcement functions from the Education Department to other agencies, prompting worries about reduced oversight. A significant federal Medicaid spending reduction, totaling approximately $1 trillion over the next decade, threatens funding for services that support individuals with disabilities living independently in the community. These measures have sparked criticism that the administration is rolling back protections and rights for people with disabilities.

Advocates like Michael Lewis, vice president of policy at the American Association of People with Disabilities, interpret the funding cut as part of a broader retreat from disability rights, suggesting the administration’s stance on diversity, equity, and inclusion programs plays a role in these decisions.

Research produced by the national center has highlighted disparities faced by parents with disabilities, including higher rates of involvement with child protective services and a greater risk of parental rights termination—42 states and the District of Columbia allow disability as grounds for such actions. Housing insecurity is also more prevalent among these parents, especially Black parents with disabilities.

Nicole Lomerson, a research associate at the center who has cerebral palsy, recounted her own experience after the birth of her premature daughter. Hospital staff questioned her ability to care for her medically complex infant, raising fears of involvement by child protective services. Lomerson credits the center’s research with helping her assert her parental rights but expressed deep concern about the void that closure of the center would create for families facing similar challenges.

“I’m worried that when a parent emails us and says, ‘Hey, I’m going through a custody battle and my husband is telling the judge that I can’t parent my kid because I have a disability,’ that no one is going to be there to help them,” she said.