Lyla Abuebaid has to watch her 5-year-old son at night to make sure he keeps breathing.
Sayfideen suffers from a rare and serious syndrome that prevents him from walking. He is on a ventilator and must be monitored 24 hours a day, his mother said. Nurses have already helped care for him at home.
But for months, this task has fallen to his mother, who also juggles her job as a project manager.
“I’m not in shape,” the San Jose resident said. “I’m not in shape at work. I’m not in shape at home.”
Abuebaid said she felt like she had to “beg the state to provide him with services that he absolutely deserves.”
Lyla Abuebaid has been waiting months for government assistance to care for her son. She sometimes gets help from a family friend, but Sayfideen, 5, needs full-time help. (Peter DaSilva/For The Times)
She is one of thousands of Californians trying to get Medicaid benefits for services to help medically vulnerable people stay in their homes through the Home and Community-Based Alternatives waiver.
Demand for HCBA waivers, which help people who would otherwise have to live in nursing homes, has far outpaced the number of available spots. Last summer, California stopped accepting applications for the program because it hit an enrollment cap. Amid outcry from disability advocates and families, California won federal approval to gradually add 7,200 spots over four years, eventually serving more than 16,000 people at a time.
Yet thousands of Californians remain on the waiting list. As of June, more than 4,900 people were waiting, according to the Department of Health Services, more than double the number last summer.
When people have to wait, “either older people or people with disabilities who need services don’t get them, or family caregivers have to fill the gap,” said Nicole Jorwic, advocacy and campaigns manager for Caring Across Generations. Some may end up in nursing homes “because there are simply no other options.”
Disability advocates warned the state last year that the planned increase in spaces would not clear the existing waiting list for years, much less reach more Californians who might need care when faced with an unexpected illness or injury.
“I don’t know if they’ve done anything to fix it,” said Sarah Scharnick, a Clovis resident who first spoke to the Times about the waiting list last fall and remains on it. Her husband requires 24-hour care, including being turned at night to prevent bedsores, after a bicycle accident.
The long hours of in-home nursing care are typically not covered by private insurers, forcing many families to place their loved ones in nursing facilities or provide care themselves, patient advocates say. Abuebaid said his private insurance would not cover his son’s nursing care. He had previously received assistance through Medi-Cal, California’s Medicaid program, before losing his coverage.
Paying out of pocket for such care “would bankrupt a millionaire,” said Katelyn Ashton, executive director of Loretta’s Little Miracles, which cares for medically fragile children. For many families who don’t qualify for the waiver, “their only option is to quit their jobs and do this care themselves at home.”
State officials said that with the additional seats, nearly 10,800 people could participate in the program at one time this year. However, despite demand for the program, more than 1,500 HCBA seats remained vacant as of June, according to the Department of Health Services.
The reason: The department said it currently releases only 200 spots per month. Opening all the spots at once “would cause administrative delays” for local agencies accepting applications and for the state, “due to the high volume of applications that need to be processed.” The state agency said it has limited resources, “including staff, to review the current volume of applications.”
The agency said there are seven nurses working on reviewing applications (only two of them full-time) and four other staff members helping manage the waiting list. DHCS said the process can also be delayed by scheduling difficulties at local agencies that process applications.
The delay has alarmed groups like Disability Rights California and Justice in Aging. U.S. Rep. Nanette Barragán (D-San Pedro) said she has asked Gov. Gavin Newsom to “dedicate the resources necessary to ensure that vacancies are filled as quickly as possible.”
“Putting people into this program saves the state money in the long run,” she said.
Providing such care to a person at home is far less expensive than moving them to a nursing home, state figures show: The Department of Health Services estimated in a May report that the average nursing home costs more than $134,000 a year, compared with about $53,000 for each person in the program.
“We often settle for a few dollars to make a few cents,” said Jim Frazier, a former California assemblyman and public policy director for the Arc of California, which advocates for people with intellectual and developmental disabilities. “We’re not interested in long-term savings.”
The Department of Health estimated that 40 percent of people accessing the program came not from nursing homes, but “from the community.” Researchers found that longer wait times for such programs can be costly, even if people aren’t already living in institutions: In Iowa, seniors were more likely to end up spending time in a nursing home after a few years if they had applied for such waivers when wait times were long, the researchers found.
The impasse has also undermined efforts to help medically vulnerable homeless people, advocates said. In the San Francisco Bay Area, Cardea Health CEO Alexis Chettiar said the homeless clients her nonprofit serves “are too sick to live in an assisted living facility, they’re not allowed into shelters because they may be incontinent or have smelly sores,” and nursing homes are often unwilling to take them in.
Instead, his nonprofit has worked to enroll them in the HCBA program as they are housed. The group says it has saved more than $7 million a year by reducing emergency room visits, hospitalizations and other medical costs for these patients.
“It really works,” Chettiar said. “Or rather, it worked wonderfully until we hit the ceiling.”
More than 90 of their clients are now on the waiting list, and some have been waiting for more than a year and a half. Cardea Health has been footing the bill for their care, but Chettiar said she can’t do it forever: She relied on a few years of “seed funding” from local governments when she started services at one site, but she had planned to give patients the HCBA waiver for continued care.
As California releases slots, it is prioritizing people under 21, as well as people who have been stuck in health care facilities for months, among others. DHCS said opening slots month by month has allowed it to consistently ensure those requests are processed first. Abuebaid said that after months of waiting, her child was recently scheduled for an intake appointment.
For Californians who don’t fit those criteria, however, the wait can be particularly difficult. As of June, more than 90% of people on the HCBA waitlist were not in priority groups, according to the state.
Jenina Marik has ALS. The family applied for home care from the state nearly a year ago, and her husband Tyler Marik worries he’ll have to stop working to focus on caregiving.
(Myung J. Chun / Los Angeles Times)
Among them is Jenina Marik, who was diagnosed about a year and a half ago with a neurodegenerative disease called ALS. In a few years, the 40-year-old from Valencia, who ran a half-marathon, ran her wedding photography business and looked after her young sons, became unable to feed or dress herself.
Her husband, Tyler Marik, sought help from a care service to help while he went to work, but “I was broke.” After months of struggling, the family finally got help through a government home care program, but “it’s not nearly enough.”
Because Jenina, now a quadriplegic, still requires care at night, “I sleep maybe five hours a night … And when I’m tired, it can compromise her safety,” Tyler Marik said.
The HCBA waiver could allow them to get more extensive care, but it’s been almost a year since they filed their application. Marik worries he’ll have to stop working if nothing changes. Putting his wife in a facility “would be a nightmare,” he said.
“It would be even worse than ALS.”
Eli Marik, 7, cools off in the backyard with his dad Tyler, brother Owen, 4, and mom Jenina.
(Myung J. Chun / Los Angeles Times)
