Brandeis research center for disabled parents confronts closure after federal funding opportunity removed

The National Research Center for Parents with Disabilities at Brandeis University faces closure due to a lack of needed funding.

For the past decade the center has conducted research, provided training and technical assistance, and analyzed policies affecting disabled parents nationwide. According to the center’s analysis, an estimated 4.4 million disabled parents live in the United States. 

“This is the only center which focuses on the needs, the experiences of disabled parents,” said Monika Mitra, the center’s principal investigator. 

The closure could happen this September after an anticipated federal funding opportunity was removed before the center could apply.

On July 7 Mitra checked Grants.gov, a portal for finding and applying for U.S. federal grants, and learned that the anticipated five-year, $5 million grant opportunity had been removed from the site. The National Institute on Disability, Independent Living, and Rehabilitation Research within the Administration for Community Living in the U.S. Department of Health and Human Services administers the grant. 

Mitra said the center had been preparing for the opportunity since last September, when it first appeared on the portal’s forecast of expected grants. The grant was expected to open for applications in February, but February passed without its release. 

The grant supports a national center dedicated to research on disabled parents. Eligible institutions can compete for the award, and Brandeis has held the grant since establishing the center in 2016. 

Unless it secures replacement funding, the center faces closure when its current grant expires on Aug. 31. 

What’s at stake 

Nicole Lomerson, researcher and community liaison at the center, is also a parent who uses a wheelchair. She said the center’s closure puts all the services the center provides to help struggling disabled parents in jeopardy. 

“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, and that made my career take a hard left turn towards this issue,” Lomerson said. 

Each week Lomerson speaks with parents seeking help through the center’s technical assistance program. Their questions range from how to carry a baby while using a wheelchair to navigating child welfare cases in which a parent’s custody is threatened because of a disability. 

Miriam Heyman, the center’s project manager, said its researchers analyze nationally representative data from sources such as the U.S. Census to identify the challenges that disabled parents face and gaps in available support. The center publishes this information on its data dashboard. 

Heyman recalled a mother who contacted the center as she was rapidly losing her vision. Once she could no longer drive, she had no way to take her daughter to school. 

“If it was the child’s disability, then they would have had to provide a bus,” she said. “But because it was a parental disability, there was no mandate for that school to provide a bus, so they didn’t.”

After learning the center could close, staff held an emergency meeting with its advisory board of disabled parents. 

Advisory board member Morénike Giwa Onaiwu, a mother of six, is on the autism spectrum and has rheumatoid arthritis, spinal stenosis, and other physical and cognitive disabilities. 

“This center has made me so heard and seen,” Onaiwu said. 

Onaiwu has directed multiple disabled individuals considering parenthood to the center’s resources. After reading its materials, watching webinars and learning about support services, she said they decided to become parents. 

“You’ve dangled a carrot in front of them, and now if they can no longer access the support that they need, the answers that they need,” she said. 

With a sense of resignation to the reality, she added, “It would have been better to just leave us at the vortex that we had before.”