Lyla Abuebaid needed to check on her 5-year-old son throughout the night to make sure he was breathing.
Sayfideen suffers from a rare and serious syndrome that leaves him unable to walk. He is on a ventilator and must be monitored 24 hours a day, his mother said. Nurses used to help handle his care at home.
But for several months, the job fell instead to his mother, who also served as the project manager.
“I can’t function,” the San Jose resident said. “I’m not doing well at work. I’m not doing well at home.
Abubaid said it felt as though she had to “beg the state to provide him with the services he absolutely deserves.”
Lyla Abuebaid and her son have been waiting for government help for months. Sometimes she gets help from family and friends, but 5-year-old Sayfideen needs a full-time caregiver. (Peter da Silva/The Times)
She is one of thousands of Californians who have been trying to get Medicaid benefits through the Home and Community Alternatives Waiver, which helps medically vulnerable people stay in their homes.
Demand for the HCBA waiver, which helps people who might otherwise have to live in a nursing facility, has far outstripped available spots. Last summer, California stopped accepting applications for the program after reaching its enrollment cap. After outcry from disability rights 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.
However, thousands of Californians remain on waiting lists. As of June, more than 4,900 people were on the waiting list, more than double the number last summer, according to the Department of Health Care Services.
When people have to wait, either “elderly or disabled people who need services don’t get their services, or family caregivers are left to fill the gap,” said Nicole Jovic, director of intergenerational care advocacy and campaigns. Nicole Jorwic) said. Some may end up in a nursing facility “because there are no other options.”
Disability rights advocates warned the state last year that the planned additional slots would not clear years of existing waiting lists, let alone cover more Californians facing unexpected illness or injury who may need care.
“I don’t know if they’ve done anything to address the problem,” said Clovis resident Sarah Scharnick, who first spoke to The Times last fall about the wait list and still on the list. Her husband required round-the-clock care after his bicycle accident, including turning him during the night to prevent bedsores.
Advocates say private insurance companies often don’t cover extended periods of home care, forcing many families to place loved ones in nursing facilities or pay for care themselves. Abubed said her private insurance does not cover the cost of her son’s care. He had previously received assistance through Medi-Cal, but then lost his coverage.
Paying for such care out of pocket “would bankrupt millionaires,” said Katelyn Ashton, executive director of Loretta’s Little Miracles, which cares for people with ill health. children. For many families who can’t get a waiver, “their only option is to quit their jobs and provide their own care at home.”
State officials said that with the increased enrollment, nearly 10,800 people could participate in the program simultaneously this year. However, despite demand for the program, more than 1,500 HCBA slots remained unfilled as of June, according to the Department of Health Services.
The reason: The department says it’s currently releasing only about 200 spots per month. Opening all slots at once “would result in an administrative backlog for local agencies and state governments processing applications” “due to the large number of applications that need to be processed,” the report said. The state agency said it has limited resources “including personnel to review the number of enrollment packages available.”
The agency said it has seven nurse practitioners reviewing registration packets, only two of whom do so full-time, and four staff members who assist with waiting lists. DHCS said the process may also be delayed due to scheduling difficulties with local agencies responsible for applications.
The lag has alarmed groups like Disability Rights California and Age Justice. U.S. Rep. Nanette Barragan (D-San Pedro) said she has called on Gov. Gavin Newsom “to commit resources to make sure they fill the vacancies as quickly as possible.”
“Getting people into this program saves the state money in the long run,” she said.
State data shows that providing such care to people at home is far less expensive than transferring them to a nursing home: The Department of Health Care Services estimated in a May report that the average annual cost of nursing facilities was more than $134,000, while nursing care The cost to the institution is approximately $53,000.
“A lot of times, we get what we pay for,” said Jim Frazier, a former California lawmaker and public policy director for The Arc of California, which advocates for people with intellectual and developmental disabilities. “We’re not looking at long-term cost savings.”
The Department of Health and Care estimates that 40% of people on the scheme come not from nursing homes but “from the community”. Researchers found that even when people aren’t already living in institutions, the wait time for such programs can be costly: In Iowa, if seniors applied for such programs, they were more likely to be in institutions years later Spend some time in a sanatorium.
The impasse also undermines efforts to help medically vulnerable homeless people, advocates say. In the Bay Area, Cardea Health CEO Alexis Chettiar said the homeless clients her nonprofit serves are “too sick to live at home without support, and they are barred from shelters. Because they may be incontinent or have foul-smelling wounds,” and nursing homes are often reluctant to accept them.
Instead, her nonprofit works to enroll them in the HCBA program upon move-in. The organization says it saves more than $7 million annually by reducing emergency room, hospital and other medical expenses for these patients.
“It really works,” Chettiar said. “Or should I say – it worked really well until we hit the cap.”
Currently, more than 90 of their customers are on the waiting list, some of whom have been waiting for more than a year and a half. Cardea Health has been paying for their care, but Chettiar said it can’t do that forever: When it starts offering services at a site, it has been relying on a few years of “seed funding” from local governments, but had originally planned to keep patients Enter HCBA waiver to continue care.
California has been prioritizing people under the age of 21 and those who have been in medical facilities for several months when releasing slots. DHCS says opening spots on a month-to-month basis allows it to continue to ensure these applications are at the top of the queue. Abubed said her children were recently given an appointment to attend school after months of waiting.
However, for Californians who don’t meet those criteria, the wait could be especially painful. As of June, more than 90% of people on the HCBA waiting list were not in priority groups, according to the state.
Jeanne Malik has amyotrophic lateral sclerosis. The family applied for home care through the state nearly a year ago, and husband Tyler Malik worried he might have to stop working to focus on caregiving.
(Myung J. Chun/Los Angeles Times)
One of them is Jenina Marik, who was diagnosed with the neurodegenerative disease ALS about a year and a half ago. Within a few years, the 40-year-old Valencian woman went from running half marathons, running a wedding photography business, and supporting her young son to not being able to feed or clothe herself.
Her husband, Tyler Marik, turned to nursing services to help her while he was at work, but “I was going broke.” After months of struggling, the family finally received help through the government’s home care program. He received some help, but “it was not enough.”
Because Janina is now a quadriplegic and still requires overnight care, “I get maybe five hours of sleep a night. … When I’m tired, that puts her at risk,” Telemalik said.
The HCBA waiver would have provided them with more care, but it’s been nearly a year since they applied. Malik worries that if nothing changes, he may have to stop working. Moving his wife into a facility “would be a nightmare,” he said.
“That would be worse than ALS.”
Eli Marik, 7, enjoys the cool weather in the backyard with his father Tyler, 4-year-old brother Owen and mother Jenina.
(Myung J. Chun/Los Angeles Times)
