CW: Pregnancy, Death, Racism & Child Abuse
Brandeis University’s National Research Center for Parents With Disabilities will begin shutting down on Monday, due to a lack of federal funding. It is the United States’ only federally funded institution dedicated to studying the lives of disabled parents. Brandeis’ research center represented a significant contribution to understanding the experiences of disabled parents, and how they impact society.
The center investigated everything from how parents navigate social service systems to the unique challenges faced by pregnant mothers with physical or cognitive disabilities. In the wake of the center’s closure, we’ve lost one of the few places where research has focused on addressing these unique challenges.
From the grocery store checkout line to the soccer field, disabled parents are everywhere. There are an estimated 4.4 million disabled parents in the United States. You see them, but you don’t see the weight they carry.
Sadly, disabled parents are reported to child protective services twice as often as nondisabled parents. When child welfare agencies become involved, usually a comprehensive investigation is carried out and the parents can be given competency tests, something that the vast majority of nondisabled parents never have to go through.
Parents with psychiatric and intellectual disabilities are at particular risk of being reported to child welfare agencies. When a report is filed, their children are removed from their homes as much as 80 percent of the time.
These risks are compounded by race and socioeconomic status. Black disabled parents navigate systems that are already plagued by racial inequities. A May 2022 study from Brandeis’ National Research Center for Parents with Disabilities highlights the intersection of poverty, race, and disability.
Black parents were more likely than White parents to have at least one substantiated report in their records, and poverty-related factors, including SNAP (Supplemental Nutrition Assistance Program) status, were correlated with repeated involvement. Black disabled parents also face a greater risk of poor living conditions in the child‐welfare system, highlighting the intersectionality of race and disability.
Disabled women are particularly vulnerable to severe maternal morbidity and maternal mortality. Black women with physical disabilities are especially vulnerable. Being black and having a physical disability were identified as contributing factors in maternal mortality and severe maternal morbidity in two national studies covering 8.2 million and 8.5 million deliveries.
Black women in the U.S. have higher maternal mortality rates caused by structural racism, inequitable access to care, and provider bias. More recent studies, specifically focused ok Black disabled women, illustrate the need for accessible prenatal care, integrated care, and disability-specific training as ongoing issues.
The vulnerability begins even before a child is born. Willi Horner-Johnson, a professor at Oregon Health and Science University, found that more than twenty percent of women who gave birth in the United States in a year were disabled. Disabled women are eleven times more likely to die during childbirth than non-disabled women.
The closure will likely be as quiet as many other closures in the disability community. The closure will mean that research and advocacy will be even more limited. Ultimately, the government will spend the money elsewhere without considering the needs of the disabled community.
Sources:
Akobirshoev, Ilhom, et al. “Intersectional Inequities in Maternal Mortality: Examining the Compounded Risks for Black Birthing Individuals with Physical Disabilities.” Disability and Health Journal, vol. 18, no. 2, 2025, article 101765, https://doi.org/10.1016/j.dhjo.2024.101765.
Cho, Minhae, and Elizabeth Lightfoot. “Recurrence of Substantiated Reports by Low-Income Parents with Disabilities.” National Research Center for Parents with Disabilities, Brandeis University, https://heller.brandeis.edu/parents-with-disabilities/pdfs/recurrence.pdf.
Donnelly-DeRoven, Clarissa. “1 in 5 Births Nationwide Are to People with Disabilities, but These Patients Don’t Always Get the Care They Need.” North Carolina Health News, North Carolina Press Association, 25 Oct. 2022, https://www.northcarolinahealthnews.org/2022/10/25/1-in-5-births-nationwide-are-to-people-with-disabilities/.
Horner-Johnson, Willi, et al. “Perinatal Health Risks and Outcomes among US Women with Self-Reported Disability, 2011–19.” Health Affairs, vol. 41, no. 10, Oct. 2022, pp. 1477–1485, https://doi.org/10.1377/hlthaff.2022.00497.
“If I Wasn’t Poor, I Wouldn’t Be Unfit”: The Family Separation Crisis in the US Child Welfare System. Human Rights Watch, 17 Nov. 2022, https://www.hrw.org/report/2022/11/17/if-i-wasnt-poor-i-wouldnt-be-unfit/family-separation-crisis-us-child-welfare.
Ladd, Sarah. “Disability Alone Could Not Cost Kentuckians Parental Rights, Chance to Adopt If Bill Becomes Law.” Kentucky Lantern, States Newsroom, 6 Feb. 2025, https://kentuckylantern.com/2025/02/06/disability-alone-could-not-cost-kentuckians-parental-rights-chance-to-adopt-if-bill-becomes-law/.
Louis-Jacques, Adetola. “What I’d Like Everyone to Know About Racism in Pregnancy Care.” American College of Obstetricians and Gynecologists, Jan. 2024, https://www.acog.org/womens-health/experts-and-stories/the-latest/what-id-like-everyone-to-know-about-racism-in-pregnancy-care.
Martin, Megan E., et al. “Obstetric Racism and Ableism: A Narrative Review of Barriers to Obstetric Care and Maternal Health Outcomes for Black Disabled Women.” Health Equity, vol. 10, Jan. 2026, article 24731242261421862, https://doi.org/10.1177/24731242261421862.
Rabin, Roni Caryn. “Federal Funding for Research on Parents With Disabilities Vanishes.” The New York Times, 26 Aug. 2026, https://www.nytimes.com/2026/08/26/well/parents-disabilities-center-funding-cut-trump.html.
Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. National Council on Disability, 27 Sept. 2012, https://files.eric.ed.gov/fulltext/ED535704.pdf.
Shutt, Jennifer. “Forced Sterilizations for People with Disabilities Decried by Members of Congress.” Virginia Mercury, States Newsroom, 28 May 2024, https://virginiamercury.com/2024/05/28/forced-sterilizations-for-people-with-disabilities-decried-by-members-of-congress/.
Szilagy, Sarah. “New Ohio Law Protects Disabled People’s Parental Rights.” WDTN.com, Nexstar Media Group, 6 Jan. 2023, https://www.wdtn.com/news/ohio/new-ohio-law-protects-disabled-peoples-parental-rights/amp/.