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This Scientist Has a Risky Plan to Cool Earth. There’s Growing Interest.

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This Scientist Has a Risky Plan to Cool Earth. There’s Growing Interest.

David Keith was a graduate student in 1991 when a volcano erupted in the Philippines, sending a cloud of ash toward the edge of space.

Seventeen million tons of sulfur dioxide released from Mount Pinatubo spread across the stratosphere, reflecting some of the sun’s energy away from Earth. The result was a drop in average temperatures in the Northern Hemisphere by roughly one degree Fahrenheit in the year that followed.

Today, Dr. Keith cites that event as validation of an idea that has become his life’s work: He believes that by intentionally releasing sulfur dioxide into the stratosphere, it would be possible to lower temperatures worldwide, blunting global warming.

Such radical interventions are increasingly being taken seriously as the effects of climate change grow more intense. Global temperatures have hit record highs for 13 months in a row, unleashing violent weather, deadly heat waves and raising sea levels. Scientists expect the heat to keep climbing for decades. The main driver of the warming, the burning of fossil fuels, continues more or less unabated.

Against this backdrop, there is growing interest in efforts to intentionally alter the Earth’s climate, a field known as geoengineering.

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Already, major corporations are operating enormous facilities to vacuum up the carbon dioxide that’s heating up the atmosphere and bury it underground. Some scientists are performing experiments designed to brighten clouds, another way to bounce some solar radiation back to space. Others are working on efforts to make oceans and plants absorb more carbon dioxide.

But of all these ideas, it is stratospheric solar geoengineering that elicits the greatest hope and the greatest fear.

Proponents see it as a relatively cheap and fast way to reduce temperatures well before the world has stopped burning fossil fuels. Harvard University has a solar geoengineering program that has received grants from the Microsoft co-founder Bill Gates, the Alfred P. Sloan Foundation and the William and Flora Hewlett Foundation. It’s being studied by the Environmental Defense Fund along with the World Climate Research Program, an international scientific effort. The European Union last year called for a thorough analysis of the risks of geoengineering and said countries should discuss how to regulate an eventual deployment of the technology.

But many scientists and environmentalists fear that it could result in unpredictable calamities.

Because it would be used in the stratosphere and not limited to a particular area, solar geoengineering could affect the whole world, possibly scrambling natural systems, like creating rain in one arid region while drying out the monsoon season elsewhere. Opponents worry it would distract from the urgent work of transitioning away from fossil fuels. They object to intentionally releasing sulfur dioxide, a pollutant that would eventually move from the stratosphere to ground level, where it can irritate the skin, eyes, nose and throat and can cause respiratory problems. And they fear that once begun, a solar geoengineering program would be difficult to stop.

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“The whole notion of spraying sulfur compounds to reflect sunlight is arrogant and simplistic,” the Canadian environmentalist David Suzuki said. “There are unintended consequences of powerful technologies like these, and we have no idea what they will be.”

Raymond Pierrehumbert, an atmospheric physicist at the University of Oxford, said he considered solar geoengineering a grave threat to human civilization.

“It’s not only a bad idea in terms of something that would never be safe to deploy,” he said. “But even doing research on it is not just a waste of money, but actively dangerous.”

Shuchi Talati, the founder of a nonprofit organization called the Alliance for Just Deliberation on Solar Geoengineering, called the technology “a double-edged sword.”

“It could be a way to limit human suffering,” she said. “At the same time, I think it can also exacerbate suffering if used in a bad way.”

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In a series of interviews, Dr. Keith, a professor in the University of Chicago’s department of geophysical sciences, countered that the risks posed by solar geoengineering are well understood, not as severe as portrayed by critics and dwarfed by the potential benefits.

If the technique slowed the warming of the planet by even just one degree Celsius, or 1.8 degrees Fahrenheit, over the next century, Dr. Keith said, it could help prevent millions of heat-related deaths each decade.

A planet transformed by solar geoengineering would not be noticeably dimmer during the daytime, according to his calculations. But it could produce a different kind of twilight, one with an orange hue.

He agrees that nations should stop burning coal, oil and gas, period. But Dr. Keith believes in going further.

Lean and athletic at 60, with glacier-blue eyes, Dr. Keith has spent his life outside the lab rock climbing, sea kayaking and skiing in the Arctic. He is deeply troubled by the myriad ways climate change is disrupting the natural world.

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By lowering global temperatures, solar geoengineering could help restore the planet to its preindustrial state, recreating conditions that existed before enormous amounts of carbon dioxide were pumped into the atmosphere and began to cook the Earth, he said.

If there were a global referendum tomorrow on whether to begin solar geoengineering, he said he would vote in favor.

“There certainly are risks, and there certainly are uncertainties,” he said. “But there’s really a lot of evidence that the risks are quantitatively small compared to the benefits, and the uncertainties just aren’t that big.”

The only thing more dangerous than his solution, he suggested, may be not using it at all.

To understand just how contentious Dr. Keith’s work can be, consider what happened when he tried to perform an initial test in preparation for a solar geoengineering experiment known as Scopex.

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Then a professor at Harvard, Dr. Keith wanted to release a few pounds of mineral dust at an altitude of roughly 20 kilometers and track how the dust behaved as it floated across the sky.

A test was planned in 2018, possibly over Arizona, but Dr. Keith couldn’t find a partner to launch a high-altitude balloon. When details of that plan became public, a group of Indigenous people objected and issued a manifesto against geoengineering.

Three years later, Harvard hired the Swedish space corporation to launch a balloon that would carry the equipment for the test. But before it took place, local groups once again rose up in protest.

The Saami Council, an organization representing Indigenous peoples, said it viewed solar geoengineering “to be the direct opposite of the respect we as Indigenous Peoples are taught to treat nature with.”

Greta Thunberg, the Swedish climate activist, joined the chorus. “Nature is doing everything it can,” she said. “It’s screaming at us to back off, to stop — and we are doing the exact opposite.”

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Within months, the experiment was called off.

“A lesson I’ve learned from this is that if we do this again, we won’t be open in the same way,” Dr. Keith said.

Behind the scenes, the Harvard team and its advisory committee became mired in finger pointing over who was to blame for the collapse of the project. Dr. Talati, a member of the Scopex advisory board, said it was “the moment of peak chaos.”

It didn’t help that there were personality conflicts. Several committee members said Dr. Keith could be ornery and headstrong, correcting colleagues in casual conversation and belittling those with whom he disagreed.

“I can be abrasive and difficult,” Dr. Keith acknowledged. “I am sometimes inappropriately forceful in making my point. I’m intense.”

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Opponents of solar geoengineering cite several main risks.

They say it could create a “moral hazard,” mistakenly giving people the impression that it is not necessary to rapidly reduce fossil fuel emissions.

“The fundamental problem is that we think we’re so smart that we don’t have to pay attention to nature’s boundaries,” Dr. Suzuki said. “But we haven’t dealt with the root cause of the problem, which is us.”

The second main concern has to do with unintended consequences.

“This is a really dangerous path to go down,” said Beatrice Rindevall, the chairwoman of the Swedish Society for Nature Conservation, which opposed the experiment. “It could shock the climate system, could alter hydrological cycles and could exacerbate extreme weather and climate instability.”

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And once solar geoengineering began to cool the planet, stopping the effort abruptly could result in a sudden rise in temperatures, a phenomenon known as “termination shock.” The planet could experience “potentially massive temperature rise in an unprepared world over a matter of five to 10 years, hitting the Earth’s climate with something that it probably hasn’t seen since the dinosaur-killing impactor,” Dr. Pierrehumbert said.

On top of all this, there are fears about rogue actors using solar geoengineering and concerns that the technology could be weaponized. Not to mention the fact that sulfur dioxide can harm human health.

Dr. Keith is adamant that those fears are overblown. And while there would be some additional air pollution, he claims the risk is negligible compared to the benefits.

“There’s plenty of uncertainty about climate responses,” he said. “But it’s pretty hard to imagine if you do a limited amount of hemispherically balanced solar geo that you don’t reduce temperatures everywhere.”

Last year, after the failure to launch the Scopex experiment in Sweden, Dr. Keith made a move that stunned his colleagues. He announced he was closing the door on 13 years at Harvard and taking his ambitions to the University of Chicago, where he would build a new program around climate interventions, including solar geoengineering.

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“I don’t know whether that stuff will ever get used,” said Mr. Gates, a major investor in climate technology. “I do believe that doing the research and understanding it makes sense.

Dr. Keith’s career can be traced to his father, Tony Keith, a wildlife biologist who attended the first global gathering to address threats to nature, the 1972 United Nations Conference on the Human Environment in Stockholm.

Dyslexia prevented him from learning to read until late in 4th grade, but when he was finally able to make sense of written words, he became a voracious reader. He also loved camping and, at 17, hiked a stretch of the Appalachian Trail solo.

After graduating from the University of Toronto, he spent months rock climbing. Looking for a way to get paid to live in the wilderness, he got a job studying walruses in the Canadian Arctic.

Dr. Keith eventually enrolled in a doctoral program at the Massachusetts Institute of Technology to study experimental physics.

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In 1992, he published an academic paper, “A Serious Look at Geoengineering,” that raised the questions that would shape his career: Who should authorize the use of these technologies? Who is liable if something goes wrong?

His academic career took him from Carnegie Mellon University to the University of Calgary, where he began investigating ways to capture and store carbon dioxide. The next stop was Harvard, where he got serious about solar geoengineering.

In 2006, a mutual acquaintance introduced him to Mr. Gates, who wanted to learn more about technologies that might help fight global warming. The two men discussed climate and technology in a series of meetings over the next 10 years.

Then in 2009, Dr. Keith founded Carbon Engineering, a company that developed a process for pulling carbon dioxide from the atmosphere. Investors included Mr. Gates, Chevron and N. Murray Edwards, who made billions pumping oil from the Canadian oil sands.

Last year Carbon Engineering was acquired by Occidental Petroleum, a major oil and gas producer based in Texas, for $1.1 billion. Dr. Keith owned about 4 percent of the company at the time of the sale, delivering him a personal windfall of about $72 million.

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Occidental is now building a series of enormous carbon capture plants. It plans to sell carbon credits to big companies like Amazon and AT&T that want to offset their emissions. Critics say that will only delay the phaseout of fossil fuels while allowing an oil company to profit.

“Of course I’m uncomfortable about it being sold to an oil company, no question,” Dr. Keith said, adding that he plans to give away most of his profits from the sale of Carbon Engineering, perhaps to a conservation group.

On a summer Monday in Cambridge, Mass., the Harvard campus was mostly quiet. But inside one classroom, a standing-room-only crowd listened as experts discussed the merits and risks of solar geoengineering.

Among those featured was Frank Keutsch, Dr. Keith’s former collaborator on the Scopex experiment.

Dr. Keutsch is less sanguine than Dr. Keith when considering its potential risks.

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“I compare stratospheric solar geoengineering with opiates,” he said on the panel. “They only treat the symptom and not the actual cause. You can get addicted to it if you don’t actually address the cause. In addition, like any painkiller, you’re going to have side effects. And then there are withdrawal symptoms, and that’s termination shock.”

Dr. Keutsch is now investigating whether calcium carbonate or diamond dust might be a better material than sulfur, and pondering issues around how a deployment might one day be governed. There are no current plans for a field experiment.

Academic energy in the field has followed Dr. Keith to the University of Chicago, which is allowing him to hire 10 full-time faculty members and build a new program focused on various types of geoengineering. The total cost could reach as much as $100 million.

The move has puzzled some. Dr. Pierrehumbert, who recently departed the University of Chicago for Oxford, said he was “flabbergasted” and contended that those research dollars could be better spent investigating ways to reduce the use of fossil fuels.

To celebrate his 60th birthday in October, Dr. Keith went hiking in the Canadian Rockies and came across a glacier that had shrunk dramatically in recent years. It was a visual reminder that global warming is upending the natural world, and it confirmed his central, controversial belief: Humans have already altered the planet, heating the climate with greenhouse gases. To repair the climate and return it to a more pristine state, we may need to take even more drastic action and engineer the stratosphere.

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“I’m more motivated even now to push on solar geo because the rationalist case for it is looking stronger,” Dr. Keith said. “While there are still lots of strong individual voices of opposition, there are a lot of people in serious policy positions that are taking it seriously, and that’s really exciting.”

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Secret shoppers find long waits and scarce openings in L.A. for psychiatric care with Medicaid

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Secret shoppers find long waits and scarce openings in L.A. for psychiatric care with Medicaid

Only 15% of phone calls seeking psychiatric appointments for Medicaid patients resulted in an appointment in Los Angeles, the lowest percentage out of four cities in a “secret shopper” audit, researchers found.

Los Angeles also had the longest wait times, with the median wait stretching 64 days — more than twice as long as in New York City or Chicago and nearly six times the median wait in Phoenix, secret shoppers found.

The findings, published Wednesday in a research letter in JAMA, underscore long-standing concerns about Medicaid recipients being unable to access psychiatric care when they need it.

Earlier research has found that psychiatrists are less likely than other physicians to accept Medicaid, a public insurance program serving people with low incomes. The headaches for would-be patients are exacerbated by what critics refer to as “ghost networks,” in which health insurers list medical providers in their directories who aren’t accepting new patients, don’t take their insurance or are otherwise inaccessible to patients.

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As a medical student at Weill Cornell Medical College trying to ensure follow-up for patients leaving the hospital, “one area in which I consistently was coming up against a wall was making outpatient mental health appointments,” said Dr. Diksha Brahmbhatt, who helped spearhead the audit and is now a resident physician at Brigham and Women’s Hospital in Boston.

For one young man on Medicaid, “it took about an hour and a half to try to get any appointment for him at all” — and it was scheduled about 40 days after his discharge, Brahmbhatt said.

Such experiences left her wondering, “What is the extent of this issue, especially in urban areas where we might expect access to actually be better for patients?”

To see what Medicaid patients might encounter when seeking psychiatric care, researchers from Weill Cornell Medical College randomly chose scores of “psychiatric prescribing clinicians” — psychiatrists, nurse practitioners and physician assistants — who were listed as accepting new patients by the biggest managed care plans for Medicaid patients in each city, then phoned to ask for the soonest available appointment.

They found that less than 18% of the listed clinicians they tried to contact were reachable, accepted Medicaid and could offer an appointment for a new patient on the insurance program. Even among those psychiatric providers able to schedule an appointment, waits could stretch up to six months.

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All in all, only 27.2% of offices they phoned had an appointment available for a Medicaid patient with either the intended provider or another one at the same practice. In L.A., that rate was only 15%, compared with 27.5% in Chicago, 30% in Phoenix and 36.3% in New York City. The typical waits were much longer in L.A. as well.

The JAMA letter did not speculate on why such appointments might be scarcer or waits longer in L.A. Brahmbhatt said that the study wasn’t designed to examine those differences and that the number of offices they called — 320 total — limited their ability to draw conclusions.

Health economist William L. Schpero, one of the researchers who performed the audit, said that “the access challenges we identified are likely the product of multiple factors,” including “inaccuracies in plan directories, clinician reluctance to participate in Medicaid, and an under-supply of psychiatric clinicians in some areas.”

“Which of those factors — among others — is primarily driving the relatively low appointment availability we found in L.A. requires additional research,” Schpero said.

Schpero and Brahmbhatt found that among the psychiatric providers with whom they could not make an appointment, 15.2% had phone numbers listed that were incorrect or out of service, and 35% didn’t answer the phone after two attempts.

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This is a patient population that “already faces a lot of barriers to getting the care that they need” and may already be grappling with mental health symptoms when they seek an appointment, Brahmbhatt said.

If they hit roadblocks, they are “that much more likely to then disengage from the healthcare system.”

In California, lawmakers are weighing a bill that would mandate that health insurers keep accurate listings or face fines. The bill, AB 236, would gradually phase in requirements for increasing accuracy in provider directories, starting with at least 60% next summer and increasing to at least 95% by July 2028. Fines for faulty listings could range up to $10,000 for every 1,000 people insured by a health plan, and those penalties could be adjusted upward with time.

“When Californians can’t find a provider, it leads to delayed or more expensive care,” said Katie Van Deynze, policy and legislative advocate at the consumer advocacy group Health Access California, which sponsored the legislation. “AB 236 puts health plans on a path of improvement, so patients no longer have to call through lists of outdated providers that have moved, retired, or are not accepting new patients.”

The California Department of Managed Health Care estimated in January that implementing the bill could cost up to $12 million annually for additional staffers, but a department spokesman said it was updating its estimate based on the latest version of the bill ahead of a Monday hearing.

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The January estimate was based on “additional workload to promulgate regulations and guidance, develop methodology and review plan documents for compliance” and other needed tasks to carry out requirements under the bill, department spokesperson Kevin Durawa said in an email.

As of June, AB 236 was backed by the National Union of Healthcare Workers and the National Multiple Sclerosis Society, among others, but opposed by industry groups including the California Assn. of Health Plans and the California Medical Assn.

Mary Ellen Grant, vice president of communications for the California Assn. of Health Plans, said its members understand the frustration that arises from inaccurate listings, but “AB 236 does nothing to address the root cause of the issue” and “simply places the full responsibility of provider directory accuracy onto health plans.”

Their accuracy is “largely reliant upon providers and medical groups maintaining their own accurate records and providing that information to health plans in a timely manner,” the group said. “The bill fails to acknowledge this shared responsibility” and is “unfairly punitive against health plans.”

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As human cases of bird flu grow, feds say flu vaccine could help prevent a new pandemic

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As human cases of bird flu grow, feds say flu vaccine could help prevent a new pandemic

Although health officials say the risk of H5N1 bird flu infection is still low for the general population, they announced on Monday a $5-million plan to offer seasonal flu vaccine to livestock workers.

Nine poultry workers in Colorado are reported to have been infected; the symptoms were described as “mild,” with conjunctivitis, or pink eye, as the predominant symptom. The official case total across the U.S. since April now stands at 13.

“These cases highlight that certain groups who focus on depopulating” — like the poultry workers in charge of killing the animals — “are at heightened risk of infection,” said Nirav Shah, principal deputy director at the U.S. Centers for Disease Control and Prevention.

Officials said they are launching this program for seasonal flu vaccine to protect the health of farmworkers, and also to reduce the chance of a human flu mixing with an H5N1 virus, which could ignite a new pandemic threat.

The reassortment and recombining of flu viruses is a concerning scenario.

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The 1918 “Spanish flu,” which killed more than 50 million people worldwide, was likely the recombined product of a human and avian flu. So too was the 2009 H1N1 swine flu, which led to a pandemic estimated to have caused the death of more than 280,000 people across the globe.

“We’ve seen that livestock workers are at risk for H5 infection because of their exposure to animals,” Shah said. “They are also at risk for infection with seasonal flu. … As such, it’s possible that they could be coinfected with both seasonal influenza viruses … and with H5 virus.”

He said that although such dual infections are rare, they could “potentially result in an exchange of genetic material between the two different influenza viruses … that could lead to a new influenza virus that could pose a significant public health concern, a virus that has the transmissibility of seasonal influenza and the severity of H5N1. We want to do everything we can to reduce the risk that the virus may change because of this coinfection and reassortment.”

Shah said health officials are not considering offering a vaccine for H5N1 bird flu because so far it hasn’t been associated with severe illness or with transmission between people.

The seasonal vaccination program will be established in states that have been affected by the H5N1 in both cow and poultry populations.

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California has not had any reported infections in dairy herds; however, several poultry farms and wild birds have been struck by the virus in recent months and years.

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Long, frustrating waits for home care persist despite California expanding program

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Long, frustrating waits for home care persist despite California expanding program

Lyla Abuebaid needs to check on her 5-year-old son through the night to make sure he keeps breathing.

Sayfideen has a rare and serious syndrome that leaves him unable to walk. He relies on a ventilator and has to be monitored 24 hours a day, his mother said. Nurses once helped handle his care at home.

But for months now, that work has instead fallen to his mother, who is also juggling her job as a project manager.

“I’m not functioning,” the San Jose resident said. “I’m not doing well at work. I’m not doing well at home.”

Abuebaid said it feels as though she has to “beg the state for services which he absolutely deserves.”

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Two women work with medical equipment used by a child who is wearing blue.
Close-up image of a mother helping her child put his feet into medical braces on a wheelchair.
Close-up image of a mother holding her son's hands.

Lyla Abuebaid has waited for months for help from the state with the care of her son. She sometimes gets help from a family friend, but 5-year-old Sayfideen needs a fulltime caregiver. (Peter DaSilva / For The Times)

She is among thousands of Californians who have been trying to get Medicaid benefits for services to help medically vulnerable people remain at home through the Home and Community-Based Alternatives waiver.

Demand for the HCBA waiver, which helps people who might otherwise have to live in nursing facilities, has far outstripped the available spots. Last summer, California stopped accepting applications for the program as it hit an enrollment cap. Amid an outcry from disability rights advocates and families, California got federal approval to gradually add 7,200 slots over four years to eventually serve more than 16,000 people at a time.

Yet thousands of Californians remain on the wait list. As of June, more than 4,900 people were waiting, according to the Department of Health Care Services — more than twice as many as last summer.

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When people have to wait, either “aging adults or disabled people who need services are going without them, or family caregivers are left to fill in the gaps,” said Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations. Some could end up in nursing facilities “because there just aren’t alternatives.”

Disability rights advocates had warned the state last year that the planned increase in slots would not clear the existing wait list for years, let alone reach more Californians who might find themselves in need of care as they face unexpected illness or injury.

“I don’t know that they’ve done anything to solve the problem,” said Clovis resident Sarah Scharnick, who first spoke with The Times about the wait list last fall and is still on it. Her husband requires round-the-clock care, including being turned at night to prevent bedsores, after a bicycle crash.

Long hours of nursing care at home are not typically covered by private insurers, forcing many families to resort to placing their loved ones in nursing facilities or to shoulder their care themselves, advocates say. Abuebaid said her private insurance would not cover her son’s nursing care. He had previously gotten assistance through Medi-Cal, the California Medicaid program, then lost his coverage.

Paying for such care out of pocket “would bankrupt a millionaire,” said Katelyn Ashton, executive director of Loretta’s Little Miracles, which cares for medically fragile children. For many families unable to access the waiver, “their only option is to quit their job and provide that care themselves at home.”

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State officials said that with the added slots, nearly 10,800 people could be in the program at a time this year. Despite the demand for the program, however, more than 1,500 HCBA slots remained unfilled as of June, according to the healthcare services department.

The reason: The department said it is currently releasing only about 200 slots a month. Throwing open all the slots at once, it said, “would cause administrative backlogs” for both local agencies that take applications and for the state, “due to the high number of applications to process.” The state agency said it has limited resources, “including staff, to review the existing volume of enrollment packets.”

It has seven nurses who work on reviewing the enrollment packets — only two of them doing so full time — and four other staffers who assist with the wait list, the agency said. DHCS said the process can also be delayed by scheduling difficulties at local agencies that field applications.

The lag has alarmed groups like Disability Rights California and Justice in Aging. U.S. Rep. Nanette Barragán (D-San Pedro) said she had called for Gov. Gavin Newsom “to put the resources there to make sure that they’re filling slots as quickly as they can.”

“Putting people in this program saves the state money in the long run,” she said.

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Providing such care for someone at home is far less expensive than moving them into a nursing home, state figures show: The Department of Health Care Services estimated in a May report that the average nursing facility costs more than $134,000 annually, compared with roughly $53,000 for each person in the program.

“We step over a dollar to pick up a dime a lot of times,” said Jim Frazier, a former California Assembly member and director of public policy for the Arc of California, which advocates for people with intellectual and developmental disabilities. “We don’t look at the long-term cost savings.”

The healthcare department estimated 40% of people accessing the program were not coming from nursing homes, but “from the community.” Researchers have found that longer waits for such programs can prove costly even if people aren’t already living in institutions: In Iowa, older people were more likely to end up spending time in a nursing home within a few years if they had applied for such waivers when waits were long, researchers found.

The logjam has also undercut efforts to help homeless people who are medically vulnerable, advocates said. In the Bay Area, Cardea Health Chief Executive Alexis Chettiar said the unhoused clients that her nonprofit serves “are too sick to live in a home without support, they are disallowed from shelters because they may be incontinent or have malodorous wounds,” and nursing homes are often unwilling to take them.

Her nonprofit has instead worked to enroll them in the HCBA program as they are housed. The group said it has saved over $7 million annually by reducing emergency room visits, hospitalizations and other medical costs for such patients.

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“It really works,” Chettiar said. “Or I should say — it was working really magnificently until we hit the cap.”

More than 90 of their clients are now on the waiting list, where some have languished over a year and a half. Cardea Health has been footing the bill for their care, but Chettiar said it cannot do so forever: It has relied on a few years of “seed funding” from local governments when it starts services at a site, but had planned to get patients onto the HCBA waiver for continued care.

As California releases slots, it has been prioritizing people under the age of 21, as well as people who have already been stuck for months in health facilities, among others. DHCS said opening up slots month by month has allowed it to continuously ensure that those applications go to the front of the line. Abuebaid said that after months of waiting, her child had recently been scheduled for an intake appointment.

For Californians who do not fit those criteria, however, the waits can be especially punishing. As of June, more than 90% of those on the HCBA wait list were not in the priority groups, according to the state.

The Marik family at their Santa Clarita home: Eli, 7; Jenina; Tyler and Owen, 4.

Jenina Marik has ALS. The family applied through the state nearly a year ago for in-home care, and husband Tyler Marik worries he may have to stop working to focus on caregiving.

(Myung J. Chun / Los Angeles Times)

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Among them is Jenina Marik, who was diagnosed roughly a year and a half ago with the neurodegenerative disorder ALS. Within a few years, the 40-year-old Valencia woman went from running a half marathon, operating her wedding photography business and corralling her young sons to being unable to feed or dress herself.

Her husband, Tyler Marik, turned to a caregiving service to assist her while he went to work, but “I was going broke.” After months of struggle, the family eventually got some help through a government program for in-home care, but “it’s nowhere near enough.”

Because Jenina, now quadriplegic, still needs care throughout the night, “I get maybe five hours of sleep a night. … And when I’m tired that can compromise her safety,” Tyler Marik said.

The HCBA waiver could afford them more care, but it’s been nearly a year since they applied. Marik fears he may have to stop working if nothing changes. Moving his wife into a facility “would be a nightmare,” he said.

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“That would be even worse than ALS.”

A father sprays a hose toward his son in a backyard of a suburban home. A child stands next to his dad; mother looks on.

Eli Marik, 7, cools off in the backyard with father Tyler, brother Owen, 4, and mother Jenina.

(Myung J. Chun / Los Angeles Times)

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