Eboni Tomasek expected to take home her newborn the day after he was born in a San Jose hospital. But, without explanation, hospital staff said they needed to stay a second night. Then a third. A nurse said her son had jaundice. Then said that he didn’t. She wondered if they had confused her with another African American mother. In any event, why couldn’t she and the baby boy she’d named Ezekiel go home?

No one would say. “I asked like three times a day. It was brushed off,” Tomasek said, relaying her story by phone as she cradled Ezekiel, now 6 months old, in their San Jose apartment. She was told only that more tests were being run to ensure “everything’s good before you leave.”

She knew that her intensifying anger and fear about the holdup could raise her blood pressure, that Black pregnant women and new mothers are especially vulnerable to hypertension, and that it could kill her. Distraught, she called the person she most trusted to calm her, a caseworker for Santa Clara County’s Black Infant Health program.

“She really did help me to stay centered,” Tomasek said of the caseworker, who tracked her health throughout the pregnancy. “I felt a lot better.”

Since 2000, approximately 14,000 families have participated in Santa Clara County’s Black Infant Health program and related Perinatal Equity Initiative, both aimed at decreasing racial disparities in maternal and infant health. Enrolled mothers are assigned caseworkers and nurses who visit them at home to monitor blood pressure and other vital signs, help with breastfeeding, and screen infants for developmental delays. The mothers also attend support groups to learn skills to buffer the well-documented effects of racism in obstetric care.

The programs have measurably improved the health of enrolled women over the past decade, county data from 2024 shows, reducing rates of maternal hypertension — a leading cause of pregnancy-related deaths — by at least 30% and increasing screenings for other potentially life-threatening conditions.

Experts in the field and program participants stress that this work is urgent — in California, Black women are at least three times as likely as white women to die from pregnancy-related causes, and, nationally, Black infants have the highest rates of preterm birth and mortality.

While advocates for Black mothers laud the programs’ results as cause for optimism, they are concerned that the climate against diversity, equity, and inclusion, or DEI, initiatives could impede progress. Efforts to improve the health of this at-risk population have been targets of private lawsuits before, but since President Donald Trump took office, he has demanded the termination of all “‘equity-related’ grants” and threatened federal litigation against programs he claims illegally favor one racial group over another — even when they are designed to save lives, as is the case with the Santa Clara efforts.

Santa Clara County has received most of the $1 million-plus in federal funding it expects for Black Infant Health and the Perinatal Equity Initiative programs for the fiscal year ending in June. But county officials say it’s unclear how much, if any, of the remaining money — which comes from the federal health department’s Health Resources and Services Administration and Centers for Medicare & Medicaid Services — is at risk amid federal anti-DEI policies and the recent cuts at the Department of Health and Human Services. The status on funding for the coming fiscal year is also unknown, county officials said.

Santa Clara stands to lose more than $11 million in public health funds due to the federal cuts, including money used to help deliver health services to underserved communities. A list of some of the federal grants already terminated includes millions of dollars from at least three programs in other states focused on Black birth outcomes.

Any decrease in federal funding for these types of programs could have dire consequences, said Angela Aina, cofounder and executive director of Black Mamas Matter Alliance. “We will likely see an increase in deaths,” she predicted.

Aina’s group pilots research and promotes public policy on behalf of 40 U.S. community-based organizations focused on Black maternal health. Member programs connect pregnant women to health care, counseling, and nutritional and breastfeeding advice, among other things.

If these services are cut, advocates fear, the progress made toward reducing racial disparities in birth outcomes could backslide. KFF research has found that eliminating such focused efforts could exacerbate the inequities, worsen the nation’s health, and increase health care costs overall.

“Our stakeholders are in a state of confusion right now because the federal workers that still have a job are not allowed to communicate, or there’s some kind of muzzle on their communication,” Aina said. “We don’t know — are we going to receive the rest of those grant funds?”

When asked how the state would respond to federal budget cuts to programs like Black Infant Health, Brian Micek, a California Department of Public Health spokesperson, said only that the agency remains “committed to protecting Californians’ access to the critical services and programs they need” and steadfast in its mission to “advance the health and well-being of California’s diverse people and communities.”

Requests for comment from the federal departments responsible for the grants funding Santa Clara’s programs went unanswered.

Communications directors from groups working on reducing racial disparities in birth outcomes declined to be interviewed for this article, citing fears of retribution.

Tonya Robinson, program manager for Black Infant Health, stands defiant in the face of these threats. She sees the federal government’s anti-DEI crusade as an invitation to practice the very skills they teach.

“Our program is working,” Robinson said. “And the way it’s working is by empowering women, giving women voices to help them stand up for what is right, and to recognize discrimination and the impact of structural racism on their bodies.”

The government’s antagonism toward her work inspires Robinson to soldier on calmly as a role model for the women she serves.

“We’re continuing to forge ahead,” Robinson said. “We want to make sure that we can be an example of how to manage stress at this time, in front of our clients.”

Evidence surfaced that childbirth was deadlier for African American women than white women more than a century ago. But the issue did not gain significant public attention until 2018, when celebrities like Beyoncé and Serena Williams began airing their harrowing birth stories, highlighting the striking vulnerability of Black pregnant women and new mothers, even those with unlimited means.

In 2021, then-President Joe Biden proclaimed a week in April Black Maternal Health Week. A presidential proclamation marking that week in 2024 read that “when Black women suffer from severe injuries or pregnancy complications or simply ask for assistance, they are often dismissed or ignored in the health care settings that are supposed to care for them.”

Eboni Tomasek certainly felt ignored.

Three days after giving birth in September — and after her Santa Clara caseworker reminded her she had a right to know why she wasn’t being released — a nurse finally explained that Tomasek’s blood pressure had been too high for the hospital to safely discharge her.

Had she been white, Tomasek believes, the staff would have informed her sooner. “I feel like they were being racist,” she said. She credited her training through Black Infant Health with her ability to calm herself and help lower her blood pressure, allowing her to leave that day with Ezekiel.

Jamila Perritt, president and CEO of Physicians for Reproductive Health, believes that the poor health outcomes Black women and infants face have historical roots and will change only with the help of programs that, like those in Santa Clara, address conditions facing Black women.

“What we’re seeing in terms of maternal mortality are race-bound conditions,” said Perritt, an obstetrician who co-chairs Washington, D.C.’s Maternal Mortality Review Committee. “Our policies cannot be race-blind if we’re attempting to address them.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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SACRAMENTO, Calif. — California has halted a court-ordered medical parole program, opting instead to send its most incapacitated prisoners back to state lockups or release them early.

The unilateral termination is drawing protests from attorneys representing prisoners and the author of the state’s medical parole legislation, who say it unnecessarily puts this vulnerable population at risk. The move is the latest wrinkle in a long-running drive to free those deemed so ill that they are no longer a danger to society.

“We have concerns that they cannot meet the needs of the population for things like memory care, dementia, traumatic brain injury,” said Sara Norman, an attorney who represents the prisoners as part of a nearly three-decade-old federal class-action lawsuit. “These are not people who are in full command and control of their own surroundings, their memories — they’re helpless.”

Caring for a rapidly aging prison population is a growing problem across the United States. It is twice as expensive to imprison older people than those younger, according to Johns Hopkins University researchers, and prisoners 55 and older are more than twice as likely to have cognitive difficulties as non-incarcerated older adults.

Medical parole is reserved for the sliver of California’s 90,000 prisoners who have a “significant and permanent condition” that leaves them “physically or cognitively debilitated or incapacitated” to the point they can’t care for themselves, according to the state parole board. Prisoners who qualify — excluded are those sentenced to death or life without parole — can be placed in a community health care facility instead of state prison.

Attorneys said the roughly 20 parolees the state has returned to lockup need significant help performing basic functions of daily life, with some in wheelchairs or suffering from debilitating mental or physical disabilities. They say outside facilities have the capacity to provide more compassionate and humane care to very ill prisoners.

Kyle Buis, a California Correctional Health Care Services spokesperson, characterized the program as “on pause” as patients return to in-prison facilities and as officials anticipate increasing their use of the compassionate release program. Prisoners granted compassionate release have their sentences reduced and are released into society, while those on medical parole remain technically in custody.

“There were multiple considerations that went into this decision,” Buis said. “Our growing ability to support those with cognitive impairment inside of our facilities was one factor.” Democratic Gov. Gavin Newsom also cited “eliminating non-essential activities and contracts” to save money.

While nearly every state now has a medical parole law, they are rarely used, according to the National Conference of State Legislatures. One common reason is eligibility. Texas, for instance, screened more than 2,600 prisoners in 2022 but approved just 58 people. Officials also often face procedural hurdles, according to the Vera Institute of Justice, a national nonprofit research and advocacy group.

Some states, however, have tried to expand medical parole programs. Michigan did so because an earlier version of the law proved too difficult to use, resulting in the release of just one person. New York has some of the nation’s broadest criteria for release but is among states struggling to find nursing home placements for parolees.

California’s first effort to free prisoners deemed so incapacitated that they are no longer dangerous began in 1997 with a little-used process that allowed corrections officials to seek the release of dying prisoners. But that program resulted in the release of just two prisoners in 2009. The medical parole program was officially created by a state law that took effect in 2011 and was expanded in 2014 to help reduce prison crowding so severe that federal judges ruled it was harming prisoners’ physical and mental health.

Nearly 300 prisoners had been granted medical parole since July 2014, state officials reported. The average annual cost per medical parolee was between about $250,000 and $300,000 in 2023, Buis said. And despite lawmakers’ expectations when they started the program, he said, Medi-Cal — California’s Medicaid program, which is partly funded by the federal government — did not reimburse the state for their care because they were still considered incarcerated.

California has had a rollercoaster relationship with its sole nursing home contractor for medical parolees. The state ended its contract with Golden Legacy Care Center in Sylmar at the end of 2024, Newsom reported in January in his summary of the state’s 2025-26 budget.

In 2021, prison officials said they were sending dozens of paralyzed and otherwise disabled prisoners back to state prisons and limiting medical parole, blaming a federal rule change that barred any restrictions on prisoners in such facilities. The move came after state public health inspectors fined Golden Legacy for handcuffing an incapacitated patient’s ankle to the bed in violation of state and federal laws.

Golden Legacy did not return repeated telephone and email requests for comment. Buis said state officials “continuously monitored care at Golden Legacy, and we never had concern for the quality of care provided.”

Attorney Rana Anabtawi, who also represents prisoners in the class-action suit, toured Golden Legacy’s medical parole building with Norman in November and saw caregivers offering memory care patients special art classes and a “happy feet” dance party.

She felt it “was a much better place for our patients than being in prison — there appeared to be regular programming aimed at engaging them, there were no officers walking around, the patient doors were open and unlocked, patients had general freedom of movement within their building.”

Over the past several years, the California Department of Corrections and Rehabilitation has built up its capacity to service those with severely compromised health. The state created two of its own memory care units in men’s prisons, a 30-bed unit in the California Health Care Facility in Stockton in 2019 and a 35-bed unit in the California Medical Facility in Vacaville in 2023. The Central California Women’s Facility in Chowchilla provides up to 24-hour skilled nursing care for women with life-limiting illnesses including dementia.

Yet Norman fears the in-prison facilities are a poor substitute.

“They’re nowhere near enough and they are inside prisons, so there’s a limit to how compassionate and humane they can be,” she said.

In addition to the 20 returned to state prisons when the contract expired, Buis said, one was paroled through the standard process, while 36 were recommended for compassionate release. Of those, 26 were granted compassionate release, eight were denied, and two died before they could be considered.

The use of compassionate release increased under a law passed in 2022 that eased the criteria, including by adding dementia patients. Last year, 87 prisoners received compassionate release. By contrast, during the six years before the new law, just 53 were freed. Officials expect about 100 prisoners each year will qualify for compassionate release, Buis said.

Compassionate release would allow them to “sort of die with dignity,” said Daniel Landsman, vice president of policy for the criminal justice advocacy group FAMM, previously known as Families Against Mandatory Minimums, and ensure “that the California prison system is not turning into a de facto hospice or skilled nursing facility.”

Mark Leno, who authored California’s medical parole law when he was a Democratic state senator, criticized prison officials for ending their use of the law without legislative approval and instead just terminating the Golden Legacy contract. He also railed against returning very ill patients to prisons, a decision he called “perfectly inhumane.”

“Is it just cruel punishment and retribution or is this thoughtful execution of the law put in place by the legislature?” he said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).