The country’s only federally funded research center focused on parents with disabilities may have to close this year after its funding was apparently cut.
Officials from the National Research Center for Parents with Disabilities at Brandeis University told GBH News this week that they just learned that the grant they rely on was taken down from a federal website before they had the chance to apply.
The organization — which conducts research on parents with disabilities and offers training and resources — is housed at the Lurie Institute for Disability Policy at Brandeis. Monika Mitra, the Lurie Institute’s director and a professor of disability policy, said the current grant of about $5 million will run out on Aug. 31.
The center also receives some funds from the Lurie Institute. Some leftover funds could support the center for a little while, Mitra said, but eventually the center would have to wind down its operations.
She called the potential closure of the organization, “stunning.”
“You’re not just removing another grant,” she said. “It’s dismantling a national resource that’s [used by] thousands of disabled parents in the United States, service providers, researchers, policymakers, the families of disabled people, prospective parents.”
The center, which started in 2016 and has a staff of five within the larger Lurie Institute, conducts research and also does legal and policy analysis; trains professionals like child welfare workers and lawyers; and provides help to parents in crisis.
The U.S. Department of Health and Human Services, did not respond to a GBH News request for comment. Over the past year, the Trump administration has cut funding to numerous programs in Massachusetts.
Mitra says that the center’s research aims to address the stigma and misconceptions about parents with disabilities.
“The fact that they [disabled people] become adults and they might choose to have families is something society still needs to catch up on,” she said. “More than 40 states have laws in place where disability status can be used to terminate a parent’s rights.”
According to research conducted at the center, there are more than four million parents with disabilities across the country, yet they are among the least researched and least supported of all demographic groups.
Staff say they have been funded since 2016 through the National Institute on Disability, Independent Living, and Rehabilitation Research, part of the U.S. Department of Health and Human Services’ Administration for Community Living.
The grant is usually posted in February. Staff had been waiting for what is a called a Notice of Funding Opportunity — then last month someone noticed that the grant had been removed from the list of forecasted grants.
“It took my breath away,” said Nicole Lomerson, a research associate at the Lurie Institute, who uses a wheelchair and has cerebral palsy.
“I got into this work because I had a baby in one of the big hospitals in Boston in the NICU, and my ability to parent her based on my disability was called into question,” she said.
Lomerson said the resources provided by the center are vital for parents who don’t have many places to turn. She described the needs of a parent involved in a divorce case who may be losing custody of their child.
“[Or] a parent with a physical disability who uses a wheelchair who is doing a Google search and realizes that there really is no adaptive baby equipment,” she said. “That’s the one that’s keeping me up at night.”
Keith Jones, an advisory board member who has cerebral palsy and uses a wheelchair, said the impact of the center closing would be “devastating.” A father of four who range in age from 12 to 31, he called the potential de-funding a “microcosm” of the political moment, as the current administration has cut funding for programs related to marginalized groups.
He also said it reflects how the country has historically treated people with disabilities.
“As a Black father with a disability, the history of just being able to have a family has always been one not necessarily possible,” he said. “We’ve never had a moment to exist without the government specifically targeting the ability to even be a parent.”
