On July 15, the National Research Center for Parents with Disabilities announced the possibility of closure after a crucial funding opportunity was unexpectedly withdrawn by the federal government. The National Research Center for Parents with Disabilities is part of the Lurie Institute for Disability Policy at the Heller School for Social Policy and Management at Brandeis University.

The center is dedicated to advancing the rights, health and well-being of parents with disabilities and their families. They engage in advocacy, outreach and research to meet this objective and is the only federally-funded national research center focused on parents with disabilities in the United States. 

As The Waltham Times reported, the $5 million grant, provided by the National Institute on Disability, Independent Living and Rehabilitation Research, expired on Aug. 31. Without the grant, which has funded the center since its founding in 2016, the center may be facing closure.

The loss of funding comes in the context of severe funding cuts to similar programs nationwide. In Massachusetts alone, $2 billion worth of health funding has been disrupted by the current federal administration, with almost $50 million in health research grants being canceled and frozen, according to Lost Funds, a resource tracking disruptions to federal funding based on data from USA spending.

This blow also comes after H.R. 1, also known as the “One Big Beautiful Bill” Act, dramatically slashed funding for certain programs, such as Medicaid, a federal welfare program which makes  health insurance more accessible to older adults and people with certain disabilities. These cuts to Medicaid have hindered access to healthcare for many groups, including parents with disabilities.

Parents with disabilities can face significant adversity, including social, medical, financial and legal barriers. They comprise a group that is vastly under-researched with insufficient resources. “I’m a disabled parent who knows what it’s like to have my ability to parent my child called into question by people with more power and authority than I have and that was incredibly terrifying,” said Nicole Lomerson in an August article published by The Waltham Times. Lomerson is a parent who uses a wheelchair and is a researcher and community liaison at the center.

In an interview with Here & Now Newsroom, Heather Watkins, an advisory board member for the Center and a mother with muscular dystrophy, reported similar sentiments. “You’re always worried about your needs and being there for your child. Because you know you will have prying eyes.” Watkins described the judgment and lack of support she received as a parent with a physical disability, and went on to say that having access to a resource such as the Center would have been a great help to her.

Watkins described the Center as “a hub of data, information. It’s a support network. And it is a dynamic learning exchange between disabled parents who have disabilities of all kinds.”

The center oversees six ongoing projects. They include data analysis to inform targeted disability policy recommendations, analysis of laws regarding the termination of parental rights and the impact on parents with disabilities, adapting behavioral health programs intended for parents to specifically support parents with psychiatric disabilities, developing peer support programs for deaf parents and parents with intellectual disabilities and development and testing of new practices for child welfare workers. The center also provides numerous resources and trainings to support parents with disabilities and their families. 

“Everyone should have the same opportunity to be a parent, yet disabled parents face more barriers and stigma. The way to change that is more awareness and resources, not less,” said Miriam Heyman, a Project Manager for the center, in a July 15 press release. “Over the past ten years, our Center has expanded the evidence base, transformed what is known about parents with disabilities, and helped improve policies, services and supports across the country," said Professor Monika Mitra (Heller), principal investigator of the center and professor of Disability Policy at Brandeis University, in the same press release. 

In an update released on Aug. 27, the center stated they “remain committed to completing and sharing projects, research findings, and briefs that are currently underway. At the same time, we are actively pursuing other opportunities to sustain this important work and preserve the expertise, resources, and partnerships built over the past ten years.”