The Brief

One of the last remaining checks on Immigration and Customs Enforcement and private-prison contractors running immigration detention centers has all but collapsed, leaving thousands of people trapped in a system with nearly nonexistent oversight, according to an NPR review.

The grievance system in immigration detention is designed to offer a safe channel to report violations of detention standards and seek redress, without fear of retaliation. It's often the only recourse for people to submit complaints about detention issues, including mistreatment, unsanitary conditions, medical neglect and sexual assault. But an NPR review of documents, available data and interviews with experts has found the system — which in the best of times was a complex patchwork — barely operates and even at times backfires for those using it. It is one of the few remaining safeguards for immigrants in federal custody after the Trump administration effectively dismantled other oversight offices.

Detainees and their families tell NPR that in the very worst cases the absence of transparency and accountability, and the subsequent failure to adhere to mandated grievance guidelines, is one of the leading factors for the record number of deaths in detention — at least 53 since the start of President Trump's second term.

Critics say it is the reason why more detainees are risking their lives to protest inhumane conditions and legal rights violations, in the form of widespread hunger strikes.

The Department of Homeland Security declined to answer specific questions about how it handles detainees' grievance claims, how DHS or private contractor employees are trained, what steps it takes to ensure private contractors — the largest being CoreCivic and The GEO Group — adhere to guidelines, or whether all detention facilities have a mandatory grievance committee. Instead, the office referred NPR to the 2011 Performance-Based National Detention Standards, which outline how the system is intended to work.

D.E.'s story

That system didn't work for D.E., who has had a brain tumor growing in his head for the last 12 years.

He was supposed to start chemotherapy the week he was picked up by ICE just a couple of blocks from his home.

The first seizure in detention was terrifying, but the second was the worst.

It was around 2 a.m. and D.E., one of more than a thousand detainees in the California City Detention Center, was lying on the lower bunk of his small cell. The CoreCivic guard who normally brought his nightly dose of Keppra, the medication he's relied on twice a day for years to keep seizures at bay, was more than five hours late, and it wasn't the first time. He'd had the first seizure just a couple of weeks earlier, and the telltale signs of an oncoming convulsion were in full effect: a relentless throbbing in his brain behind the 3-inch scar above his left ear. The blurred vision. The dizziness.

"I could feel it coming and I didn't want to hurt myself, so I jammed my arm between the metal bed frame and the wall to lock myself in place," D.E., a Mexican national who requested that NPR only use his initials because he fears government retaliation, said in Spanish. Trapping his arm was the best precaution he could come up with to keep himself from accidentally falling face-first into the shared toilet that was just inches from his bed, he said. "It's what I was most afraid of because I could have drowned."

Recalling that night, D.E. described the episode as a sustained haze of torture. The next morning, he tried to document what he could remember in a medical grievance that has been reviewed by NPR.

In practice, the grievance system should act as an internal accountability mechanism for both federally run and contracted detention facilities; the guidelines establish mandatory review and adjudication time frames.

With limited space on the paper form, D.E. was as specific as he could be. "Hello. I am writing this letter to the Medical Services Department regarding a complaint about my medical condition," he wrote on March 6. "It is a very aggressive issue involving a brain tumor that causes headaches and has triggered epileptic episodes lasting up to four hours. I am requesting that you provide me with a doctor specializing in radiation and chemotherapy, as my treatment was interrupted when I was detained by ICE on January 19."

A breakdown of oversight

Lawmakers, immigration attorneys, advocates and detainees report that experiences like D.E.'s are ubiquitous across the nation's detention centers, reflecting a broken grievance process.

Trying to enforce the rules of the grievance system has always been challenging, Chris Brundage, the former deputy of the now-closed Office of the Immigration Detention Ombudsman, told NPR.

That's partly because it's not one single set of standards that all operators must follow, Brundage said. "It's a patchwork system that has never worked as intended," he said, explaining that there are at least three different sets of detention standards that operators are working under, depending on when they signed their contracts. (Some operators are following guidelines established in 2011. Others, an updated version from 2016, and those with new contracts are following 2019 standards.)

D.E.'s documentation of medicine taken, his seizures and medical visits during his three months in detention.

(

Lianne Milton for NPR

)

Over the last two years, those problems have been significantly exacerbated by the evisceration of nearly all immigration detention oversight offices by the second Trump administration, he said.

The Office of Detention Oversight, created by Congress to conduct internal inspections, and the Immigration Detention Ombudsman's office tasked with investigating detainee deaths and other issues have had their budgets gutted and suffered massive layoffs. Both agencies sit within DHS. In the case of the ombudsman's office, one of the only places that detainees could turn to to challenge a grievance denial outside of the immediate detention facility, it was fully shuttered in May.

Another office whose budget has been slashed is the Office for Civil Rights and Civil Liberties, Brundage noted. In 2025, the administration slashed the CRCL staff from roughly 150 employees down to just a handful, effectively halting operations. The Government Accountability Project reported more than 500 active civil rights and detention-abuse complaints — including allegations of medical neglect, sexual abuse and dangerous conditions in immigration detention — were frozen or left uninvestigated.

At the time, the Trump administration said cutting hundreds of staff positions at the congressionally mandated offices was necessary to save money and because DHS claimed they were "internal adversaries that slow down operations."

"I think what happened when these offices were effectively gutted and shut down, you lost that … legitimacy. And legitimacy means that they're following the laws, regulations. But what happens if you don't have transparency into the process and you don't have accountability? Without those two things, that legitimacy erodes, " Brundage said.

Tracking grievances

Even before the closures it has been virtually impossible for lawmakers or inspectors to know how many grievances are filed at any given detention center each year, because neither ICE nor any of the private prison companies contracted by DHS are required to disclose that data to any review body. Also, even internally detention facility operators are not required to track data on how many grievance complaints are deemed to be founded, how the issue was resolved, or if it was challenged, whether the initial rejection was overturned.

Lawmakers and immigrant rights activists say that without such mandates, they are unable to decipher any patterns that could shed light on systemic problems, either at a single facility or across the entire system. Some suggest it is a deliberate ploy to keep the public in the dark about conditions on the inside of the nation's fortress-like detention centers.

The ACLU of Northern California partnered with the California Collaborative for Immigrant Justice to document the daily conditions of life in California immigration detention by tracking formal grievances during the Biden administration. The findings were published in a 2024 study called Resistance, Retaliation, Repression: Two Years in California Immigration Detention. The organization obtained grievances from detainees and their families, and Freedom of Information Act requests from the state's six detention centers, which are all run by The GEO Group, CoreCivic, and Management & Training Corp. (Two new facilities, also run by private contractors, have been added since then.)

In all, the study reviewed 485 grievance complaints, concluding that the absence of accountability and transparency keeps conditions of detention, the grievances filed and their outcome hidden from public scrutiny. An analysis of the collected grievances revealed that complaints about the staff and their conduct, including facility management and bullying by staff, were the most common reason for grievances, with 179 documented allegations. Poor living conditions, including contaminated food, sleep deprivation, exposure to toxic mold and access to legal counsel, were the second most common reasons, with 141 filed complaints. And 94, roughly 20%, were medical grievances related to insufficient medical care and denial of medications.

Based on the data, 71% of the 485 grievances were deemed as unfounded or rejected by detention center officials. Nearly 21% were either closed, undecided, or unknown. Only 8% of the total grievances found in favor of detained people. According to detention standards, officials are required to provide, in writing, a reason for a rejection of a complaint and detainees can appeal an unfounded determination up to two times. In the past, the issue could be escalated up to the Office of Civil Rights and Civil Liberties.

Ryan Gustin, senior director of public affairs at CoreCivic, which owns or operates 12 detention centers across the country, said its facilities are closely monitored by ICE and regularly undergo reviews and audits.

"We have a robust grievance process available to all detainees at each of our ICE-contracted facilities that provides multiple safe and discrete avenues for concerns to be raised, including toll-free telephone numbers," Gustin told NPR. He added that most detainee concerns are processed through ICE's Enforcement and Removal Operations' Detention, Removals and Information Line.

It is unclear if complaints made to one of the hotline numbers or those processed through ICE's ERO removals and information line are treated in the same way as a formal grievance, that is, whether it is documented and added to a detainee's file, and if detention center officials are required to abide by the same response timelines as a written complaint. CoreCivic referred all requests for clarification to DHS, which did not respond to NPR's requests for comment.

Mariel Villarreal, a senior attorney with the California Collaborative for Immigrant Justice, told NPR that many of the denials she has reviewed rarely offer any meaningful explanation for the rejection. "It'll just be a few generic words," she said. In other instances, there is no written record of the denial on the submitted complaint. (This is what happened in all four of D.E.'s grievances, filed about two years after the study at California City.)

"But even grievances that are ultimately founded, there's often no real remedy to them. There's nothing with teeth or no enforcement mechanism for making sure the grievance is actually addressed in a meaningful way," Villarreal said.

Villarreal noted other violations that she has witnessed, including facilities that have ignored a rule prohibiting a staff member who is accused of wrongdoing from ruling on a complaint about them.

"We've heard complaints from people [saying], 'I filed the grievance about this officer or this staff who did something bad or mistreated me,' and they were the one that then adjudicated it. And the proof of that is that their name shows up in logs," she said.

The report also found that use of the grievance system can backfire. Villarreal said her clients have reported various forms of retaliation, including solitary confinement or getting transfers to detention facilities far from a complainant's family and lawyers.

"I have a feeling that a lot of people who are filing grievances in immigration detention are pretty aware of the fact that it's essentially a sham," Villarreal said. But the reason people in custody continue to file them anyway is because it's the only way to document what's happening to them, "because it's their word against the whole system," she said.

"People are at the whim of whatever ICE wants to do with them"

Despite the Trump administration's attempts to ban unannounced visits by federal lawmakers, members of Congress have the legal authority to visit ICE detention sites at any time.

Texas Congressman Joaquin Castro visits the Dilley Immigration Processing Center in south Texas about once a month. But, he told NPR, that's become more difficult as ICE is enforcing more restrictive policies designed to block unannounced visits.

"They no longer allow us to see people who want to sign up to see members of Congress when a [congressional delegation] is going to inspect the facility. Now we have to have specific permission to see particular people," Castro said after a visit to the facility in June.

U.S. Rep. Joaquin Castro, pictured at a press conference in Washington last year, visits the Dilley Immigration Processing Center in south Texas about once a month.

(

Kayla Bartkowski

/

Getty Images

)

Even so, Castro said he's witnessed operational violations on nearly every visit. On a chaperoned tour in June, the congressman said he was taken into a room with a phone bank for detainees to use to anonymously report abuses, including a connection to a national rape hotline. But when he tested the line, he said it asked for the caller's personal identification code.

"The [CoreCivic] warden said he didn't know why it was happening and that he would get back to me" about it, he said.

He added: "I think for all intents and purposes, the grievance process, the resolution process, is non-functioning at this point. And these people are at the whim of whatever ICE wants to do with them."

New Jersey State Attorney General Jennifer Davenport sued The GEO Group after staff at the Delaney Hall facility allegedly blocked health department inspectors from entering most of the complex during a scheduled visit in May. The inspection followed a hunger strike by detainees, who in a letter, complained about rotten or worm-infested food, medical neglect and being coerced into signing deportation orders. But the team of inspectors, which was tasked with conducting a biannual audit of more than 20 national detention standards, including the grievance system, was not allowed past the center's kitchen facilities.

In a statement to NPR, a DHS spokesperson said, "There are NO subprime conditions or abuse at Delaney Hall." However, a recently released report of an August 2025 inspection of the facility during which inspections and compliance specialists from the Office of Professional Responsibility were also blocked from touring the entire facility, noted a slew of health violations. And a review of the facility's suicide watch logs showed 19 instances where clinical staff failed to conduct mandatory 15-minute check-ins. Instead, documents showed gaps of up to 65 minutes.

The GEO Group referred NPR's questions to DHS.

In California, a U.S. District Court judge issued a preliminary injunction in a class-action civil suit brought by detainees and immigrant advocacy groups against ICE for allegedly subjecting immigrants to inhumane and illegal conditions at the Adelanto Processing Center — one of the largest immigration detention centers in the United States. At least four people have died in custody while detained at The GEO Group-run facility since September 2025.

The lawsuit called Adelanto's grievance process "slow and often futile," adding that "detained individuals routinely wait more than a month for response after filing a grievance." It also states that in some cases, The GEO Group staff have pressured detained individuals into withdrawing their grievances in order to receive help.

The judge's July ruling said the plaintiffs "have demonstrated they are likely to prevail — or at the least, raise serious questions — on the merits of their Fifth Amendment and Rehabilitation Act claims."

She ordered the facility to immediately provide basic necessities. In addition, two independent monitors will have access to the detention center for unannounced inspections and to provide monthly reports, and detainees will have direct access to them in a confidential grievance system.

D.E.'s grievances

D.E., 44, says he moved to the U.S. when he was 18 so he could help support his parents and siblings back home in Mexico. He's been undocumented the entire time.

As he was being handcuffed and pushed into an unmarked van in January, D.E. says he asked the officers to stop by his apartment so that he could grab his medication. They didn't. Then when he arrived at Delaney Hall detention center in Newark, N.J., hours later, he told the medical intake staff about his condition.

"I even told them in English: I have a Stage 4 brain tumor. I have to take 1,000 mg of Keppra at 9 a.m. and 9 p.m. I'm supposed to start chemotherapy this week," he said.

He also gave them the name of his doctor and the hospital where he was being treated about an hour away. "Please call them," he begged.

It's unclear whether anyone at Delaney ever spoke to his medical team, but D.E. says the on-staff doctor at the detention facility reviewed his records and recommended that he be sent to a local hospital for chemotherapy. About two weeks later, he said an officer told him he didn't need chemotherapy.

Eventually, word got out and local activists started lobbying elected officials to intervene on his behalf. Days later, D.E. was transferred to a facility in Arizona for about a week, then shipped off to California City, where he says the inconsistent delivery of his meds triggered four seizures.

All in all, the second seizure lasted about four hours off and on. It's the worst one he's ever had. Throughout it, he lost control of his body and the ability to speak. He recorded the details of the episode in a formal grievance the following morning. It was one of four medical grievances D.E. filed with the CoreCivic staff in March alone.

"I filed them even though I knew nothing would change," D.E. said. "My lawyer told me they were supposed to respond to the grievances within a week, but I never got any kind of response," he added.

NPR reviewed all four complaints and confirmed that the documents do not contain a response to D.E.'s requests for chemotherapy, access to cancer specialists, or plans to ensure the timely delivery of his medications from CoreCivic or DHS staff.

According to the guidelines set by the DHS, a designated "grievance coordinator" is responsible for reviewing complaints, and staff must investigate and provide a written response, usually within five days. If the grievance involves an immediate threat to health or safety, the facility must respond within 24 hours.

"That never happened," D.E. said. Instead, "They would tell me that I would get treatment 'soon' but not set an appointment or a time frame," he said. D.E. was eventually released from detention after filing a petition in state court.

In more than three months in detention, D.E. never saw an oncologist.
Copyright 2026 NPR

Joseph Babbitt of Springfield, Mo. has a pretty good deal when it comes to health insurance. He works as a senior financial controller for West Plains Veterinary Supply, which employs about 50 people and distributes pet food, toys and vet supplies across the region.

Like about 157 million Americans, Babbitt gets insurance through his job. Unlike most Americans, his job has exceptionally generous benefits. "Our owners are very nice — they give all of our employees healthcare and they pay for it," he says. The company offers several different plan options and covers most or all of the monthly premium cost.

So why, even with free premiums, does it still feel like health costs are way too expensive? "Everybody talks about healthcare and how much it's costing them," says Babbitt. He explains that even without monthly premiums, a high deductible can be brutal — that's the amount the patient has to spend out-of-pocket before the insurance company starts paying for doctors visits and procedures, etc.

Now age 60, he remembers a time when it wasn't so bad. "Back in the '90s, our deductibles were $250 [or] $500 — now they're $5,000," he says. "That seems like a lot."

"We are the only country on our planet that forces people into bankruptcy because they get sick," he adds.

The cost of a new car, every year

Healthcare costs are rising fast in the U.S., and even workers with solid healthcare benefits through work are feeling it, according to an annual survey of nearly 2,000 employers about their health benefits. The report was published Thursday by KFF, a nonpartisan health research organization.

"The average health insurance premium for a family of four is now $28,000, which is just a ton of money," says Matthew Rae, associate director for the Health Care Marketplace Program at KFF. "It's basically the cost of a new car every year just to keep a family of four insured." Of that total for family premiums, workers pay about $7,000 per year on average and employers pay the rest.

A glimmer of positivity is that the costs for plans isn't growing as fast as it has in years past, he explains. "We're seeing a 5% increase in family health insurance premiums, which continues a period of modest growth," he says. That increase is roughly on par with worker wages and inflation.

However, "a 5% increase on a big number is still a lot of money," Rae points out. Plus, the growth for the portion of the premium costs that workers pay was 9%. "If this is the beginning of a shift of costs onto workers, that would be a big deal in terms of affordability," he says.

"We are asking people to chip in a lot of money," Rae adds. "Many people are committing a big chunk of their income to health insurance."

The uninsured rate is rising 

Another report published Thursday demonstrates the way these high costs affect people's health. The survey, conducted every two years by the Commonwealth Fund, a nonprofit foundation that supports independent research, is entitled "The State of Health Insurance Coverage in 2026."

Even for workers fortunate enough to have health benefits, "about 43% of them said that they didn't get healthcare because of cost over the past year, and about 31% reported that they had medical debt," says Sara Collins, lead author of the report.

Another key finding was that the overall uninsured rate rose in the last two years. Collins says that's significant but not surprising, because of federal policy decisions like letting extra federal subsidies for people enrolled in Affordable Care Act plans expire, and people losing Medicaid after the pandemic emergency ended.

Federal data shows millions of people have lost health coverage already from either Medicaid or the ACA marketplaces. When work requirements take effect next year, millions more people are projected to lose Medicaid.

"There is a, I think, a strong feeling across the country that something probably does need to be done to the situation that people are facing in their health and health insurance — both on the cost side and then also on these coverage losses," Collins says.

"We asked people whether the federal government has a responsibility to ensure that all Americans have coverage and nearly three quarters said yes to that — that included about 45% of Republicans, 93% of Democrats and 76% of independents."

Copyright 2026 NPR

Mike Obedoza’s Lumpia Smash Burger begins with the flavorful marinade his mother uses for making lumpia, a crispy Filipino spring roll. He folds it into a beef patty, then tops it with a fried lumpia wrapper, creamy avocado slices and fresh jalapeño.

For Obedoza, who grew up in Carson as the son of Filipino immigrants and now resides in Tustin, the burger is more than a winning recipe. “This is me on a plate,” he said.

Fresh off back-to-back Best Burger wins at the Old Towne Burger Fest in Orange County, Obedoza has landed a residency at Grand Central Market in downtown L.A. as Banger Lumpia.

He attributes his current success to the broader Filipino American food moment happening in Southern California, from Lord Maynard Llera of Kuya Lord winning Best Chef: California at the 2024 James Beard Awards to other Filipino food business upstarts' local success, including San & Wolves in Long Beach.

Mike Obedoza works the griddle, making Filipino-American Smashburger dreams come true.

(

Courtesy Banger Lumpia

)

“I’m one component of a whole movement that’s happening right now,” he said.

His residency closes this weekend as part of Filipino American History Month, capping off a whirlwind couple of months Obedoza doesn’t take for granted, especially the love he's received from his own community.

“We get a lot of Filipinos that pass by us glowing. … They’re stoked that there’s some Filipino representation,” he said.

Building the burger

Before Banger Lumpia, Obedoza’s pop-up was called Banger, and he folded Filipino flavors like sisig into tacos. Once customers learned the food was Filipino, they kept asking for the classics. “Where’s the lumpia? Where’s the pancit?” he recalled.

Since lumpia filling is marinated ground meat, a burger felt like the natural next step. Obedoza took the marinade from his mother’s lumpia recipe (onions, carrots, soy sauce and fish sauce) and worked it into an all-beef smash patty.

Back-to-back wins: Obedoza’s Lumpia Smashburger took home Best Burger at the Old Towne Burger Fest in 2025 and 2026.

(

Courtesy Banger Lumpia

)

Jalapeño and avocado add a California finish. “It’s like this perfect blend of being Filipino and Californian,” Obedoza said.

The idea has deep roots in Southern California. Obedoza points to Kogi, the Korean taco truck Roy Choi launched in L.A., which Choi said drew on a kind of local terroir. “I don’t see mustard plants and sheep grazing,” Choi said in a 2014 CNN segment with Anthony Bourdain. “I see barbed wire and telephone poles.”

“It’s a representation of the soil we were raised in," Obedoza said. “I think the Lumpia Smash burger is just my version of that.”

From skater to chef

Growing up in Carson, Obedoza found his creative outlet in rollerblading, competing and filming for sponsors. His favorite skater was Jon Julio, a Filipino American legend of the sport. “That was big for someone, a Filipino growing up in America,” Obedoza said. “I can’t think of anyone else at that time that was a representation of that.”

Obedoza studied hotel and restaurant management at Cal Poly Pomona, where a broken ankle from a skate competition pushed him to get serious about cooking. After graduating in 2007, he completed an accelerated program at the Culinary Institute of America in Greystone in St. Helena. Then, in 2008, he took a trip to the Philippines with his dad that reshaped how he saw himself.

From the skate park to the griddle, Banger Lumpia’s Mike Obedoza puts his whole self on the plate.

(

Courtesy Banger Lumpia

)

“In the States, I’m Filipino. But when I go there, I’m American,” he said.

Back home, he cooked at hotels including Hyatt and Terranea Resort before moving into marketing and e-commerce. In 2022, he started serving tacos at skate parks under the name Banger. He went full-time in 2023 and has been popping up in L.A. and O.C. ever since.

That same cultural tension carries over into his food. While his Lumpia Smash burger has won praise, Obedoza says some Filipino customers pick apart the more traditional dishes on his menu: the lumpia isn’t made right, they say, the dipping sauce and adobo need more sugar, the adobo isn’t dark enough or has no bone.

“I guess I win on the burgers, but I’ll never win on being Filipino enough,” he said.

He said his cooking reflects his parents’ style and their home region of Central Luzon, north of Manila on the Philippines’ largest island. If it doesn’t match what someone grew up with, he says to get it from their own family.

Despite those differences, Obedoza says that lumpia is “the gateway drug to Filipino food” and hopes that his customers will feel emboldened to try the rest of the menu. He sees the Grand Central Market residency as a test run for an eventual brick-and-mortar. Whatever comes next, he credits one choice: “I went all in on being unique.”

Julia Feinberg feels like she’s living in a sinister version of Groundhog Day. For the second year in a row, California lawmakers have made it tougher for seniors and people with disabilities to qualify for state-funded health benefits.

Feinberg, 37, who has a degenerative neuromuscular disorder, said without Medi-Cal she would be confined to a nursing home rather than living and working as a therapist in Oakland.

“We keep having to have the same fight over and over and over again,” Feinberg said. She requires a power wheelchair and about 19 hours of caregiving each day, which Medi-Cal covers.

California is cutting Medi-Cal after a decade of expansion, part of sweeping federal and state cuts that experts estimate will kick more than 2.2 million Californians off coverage in the next four years, doubling the state’s uninsured rate.

The latest cut came in June, when state leaders approved a budget that will lower the asset limit for low-income seniors and people with disabilities to $21,000 to qualify for Medi-Cal, starting in July 2027. Feinberg, who has built up emergency savings, will have to spend about $10,000 to get under the cap.

In 2024, the state eliminated longstanding Medi-Cal asset limits, but since then lawmakers have chipped away at that policy. At the beginning of this year, state leaders reinstated an asset limit of $130,000, and the June budget lowered it further.

A primary residence and one vehicle are exempt from the new limit, but people 65 and older as well as those with disabilities cannot own a second home or car, and they can’t have more than $21,000 in savings accounts, certain retirement accounts, life insurance policies or even burial plots. They must still meet Medi-Cal income eligibility limits of about $1,800 a month for a single person.

Advocates say the rules unfairly target older people and those with disabilities.

“It’s really expensive to be disabled,” said Elizabette Guéçamburu, 44, who like Feinberg has spinal muscular atrophy and requires a power wheelchair as well as daily caregiving.

Guéçamburu said she’s saving up for a used wheelchair-accessible van, which costs about $75,000. Home modifications such as adding ramps and making bathrooms accessible also cost tens of thousands of dollars, none of which are covered by Medi-Cal. Guéçamburu said those expenses would be impossible to afford if she couldn’t save.

Guéçamburu lives on her family’s farm in Patterson where they grow walnuts, almonds and alfalfa. She works part time as the farm’s bookkeeper. In 2024, doctors diagnosed Guéçamburu’s father with prostate cancer, and he could no longer act as her caregiver. The same year, California eliminated asset limits for people with disabilities and seniors — Guéçamburu cried, able to qualify for Medi-Cal for the first time.

“The timing was a godsend,” she said.

Now, her aging father is unable to take care of her should she lose Medi-Cal, and Guéçamburu is struggling to figure out what to do with money left to her by her grandmother. She’ll likely have to put it into a special needs trust controlled by a family member and give up financial independence. She also had her family strike her from inheriting any portion of their 100-year-old farm. Private home care costs thousands of dollars a month, making it hard for lower- and middle-income people to pay for it out-of-pocket.

“I have to surrender our legacy just to have medical security and have the ability to live my life,” Guéçamburu said.

Asset limit flip-flop

Gov. Gavin Newsom eliminated Medi-Cal asset requirements in 2024 after a yearslong campaign by senior and disability rights advocates. In a statement before the elimination, Newsom said he was proud of the “bold investments” his administration was making to “protect life savings and homes.”

But two years later, faced with a $12 billion budget shortfall, Newsom proposed reinstating the former $2,000 limit, arguing that more than twice as many people enrolled as previously estimated. The Legislature opposed that proposal and compromised at the current higher limit of $130,000, lowering it again to $21,000 starting next July.

Lindsay Imai Hong, California director for Hand In Hand, an advocacy group supporting families that need caregiving, said organizers are looking to the next governor for change.

“We would love to see the asset test permanently taken off of the chopping block,” Imai Hong said.

Republican gubernatorial candidate Steve Hilton said in a statement to CalMatters that he opposes asset limits. He criticized the state for extending other Medi-Cal benefits beyond what it could afford, including coverage for immigrants without legal status.

“Seniors and people with disabilities shouldn’t lose their coverage because they’ve managed to save some money. They’ve done the responsible thing. Why punish them for it?” he said.

Democratic gubernatorial candidate and front-runner Xavier Becerra did not answer specific questions about the asset limit policy, but a campaign spokesperson blamed the Trump administration’s federal cuts for “squeezing” California’s Medi-Cal program.

Becerra will be “focused on protecting access to care and demand savings that are real, measurable and sustainable,” spokesperson Johnathan Underland said. On the campaign trail, Becerra has called himself California’s next “healthcare governor” and has previously floated raising taxes to reverse Medi-Cal cuts, but has not released detailed health policy plans.

Camille Nguyen, an attorney with the Legal Aid Society of San Mateo County, said most people who struggle to stay under the limit have little financial security.

“They have all of their life savings in cash savings instead of a house. That's their retirement. That is the amount they are expecting to live off of for the rest of their life,” Nguyen said.

State data shows about 600 people lost Medi-Cal when California reinstated the $130,000 limit. Advocates expect many more to lose Medi-Cal at the lower limit, but the state never released budget estimates before lawmakers approved the $21,000 limit. If the state reinstated the much lower $2,000 limit, the Department of Finance estimated 62,000 seniors and people with disabilities would lose Medi-Cal over two years.

Limit fuels anxiety, anger among people with disabilities

Feinberg said the prospect of losing Medi-Cal is especially scary because she would also lose access to a special disability program that pays for extra caregiving hours and has a multiyear waitlist. Caregivers help Feinberg get in and out of bed, dress and prepare her meals.

Before the limit was erased in 2024, Feinberg said she checked her bank account every day to make sure the balance was low. At the time, Feinberg was a graduate student and did not earn very much money. Now, as a licensed therapist Feinberg has been able to squirrel away some money.

“I don’t want to spend down that money. I want to save that for retirement, maybe buying a house in the future,” Feinberg said. “The prospect of not being able to have a nest egg is very unsettling.”

Guéçamburu said she’s angry and frustrated that the state views services for people with disabilities as expendable.

“It’s exhausting to have to justify your existence every legislative cycle,” she said.

Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit www.chcf.org to learn more.

This article was originally published on CalMatters and was republished under the Creative Commons Attribution-NonCommercial-NoDerivatives license.