Families Who Need Help Paying For 24/7 Home Care Are Stuck On Waitlist

LOS ANGELES – Nine months after giving birth, Caitlin Martin is still waiting to bring her son home from the hospital.

Her son Connor uses a feeding tube and relies on a tracheotomy and a ventilator to breathe. He was born with a rare birth defect called omphalocele, which means that some of his organs are located in a sac outside his body. Surgeons will eventually fix it, but only after a few years, when he has grown up.

Martin, who comes to the neonatal intensive care unit at Children’s Hospital of Orange County every day to help care for Connor, is eager to bring him home to Anaheim.

But she also fears there will be little help for her and her husband when that happens, leading to exhaustion and possibly putting Connor at risk.

Your health insurance will only cover a limited number of hours of home nursing care, time that could run out in a matter of weeks if a child needs 24-hour care.

Families like hers can get Medicaid benefits for services that allow medically fragile people to live at home instead of in a hospital, nursing facility or other institution. In California, they can do this by obtaining the Home and Community Based Alternatives exemption.

But Connor and thousands of other Californians have been languishing on a waiting list. The state stopped accepting applications for the program over the summer, saying it was reaching its annual allotment of 8,974 spots. The outage has left people stranded who have no realistic way to pay for all the home care their families need.

The danger is that “parents decide, ‘We want to bring our child home.’ We will go home with the limited coverage we have through our commercial plan even though our son needs 24/7 care. We’re just not going to sleep to make sure someone is awake to take care of the child,’” said Anna Leach-Proffer, managing attorney at Disability Rights California. “That puts the child at risk.”

In September, more than 3,000 state residents were waiting for an exemption from the HCBA. Some have been trapped in hospitals or nursing facilities, advocates say. Other families have cobbled together enough home care for their loved ones, but may end up dangerously exhausted or in financial difficulty.

In Clovis, Sarah Scharnick went on leave and relied on family and friends to help her care for her husband, James, who was in an accident while mountain biking and now needs 24-hour care, including getting turn every two hours to avoid pressure ulcers. “It takes two people because he’s a big guy,” Scharnick said. “My mom is staying. Our friends have made a little schedule. She…she is taking over a village.”

His insurance pays for James to receive medical care at home for an injury he suffered while in intensive care, but that’s just a handful of hours a week, not “any of the day-to-day stuff,” Sarah Scharnick said. She worries what will happen when she has to go back to work as a speech therapist.

If you have to pay out of pocket for nursing care, “there’s no way you can afford it.” Private insurance typically doesn’t cover nearly the amount of nursing care a person may need at home, advocates said. As for a nursing facility, Scharnick said, “we just don’t want that. “It’s not where he needs to be.”

Martin is a registered nurse and plans to put her career on hold to handle much of her son’s care at home, but her husband works during the day and “we have to sleep sometime,” she said. She fears that Connor could turn off her ventilator without anyone noticing because the tracheotomy prevents her screams from being heard.

“Someone has to be awake with him,” he said. “In my nursing brain, it’s a safety concern.”

Martin is furious about the fact that Medi-Cal, the state’s Medicaid program, will easily pay for baby Connor to be in a nursing facility, but not in “the home where we know he’s going to thrive best and is actually the least expensive for the family. state.”

“It’s crazy to me that our system is so broken,” he said.

Children like Connor, whose families earn too much to qualify for Medi-Cal, are eligible for the program when they live in nursing facilities or institutions because in those situations, parents’ income is not taken into account. However, at home they may lose that eligibility unless they obtain the HCBA waiver (or other Medi-Cal waivers for people with developmental disabilities).

For eligible adults with disabilities or serious injuries, Medi-Cal covers a nursing home if authorized by a doctor, but will not cover the same level of home care without a waiver.

The California Department of Health Care Services told local agencies in July that it was no longer accepting new applications because the program was reaching its annual participant limit. “It was kind of a shock,” said Pauline Shatara, deputy director of California Advocates for Nursing Home Reform.

The state said it planned to ask the federal government for more spaces that would be available in January, although it was still determining how many.

However, “even when they add more spaces, it seems like they’re playing catch-up,” Shatara said.

Advocates believe there are likely even more people who need the program but were unaware of its existence or had been discouraged from trying to apply. The HCBA waiting list was long for so many years that “people stopped considering it a viable option,” said Elizabeth Zirker, senior attorney at Disability Rights California.

Disability Rights California has requested 50,000 spaces in the state, with the possibility of adding more if necessary. Cutting the program will result in the “unnecessary institutionalization of thousands of Californians,” he said.

The organization also noted that the average cost for someone with an HCBA waiver is less than $48,000 a year, compared to nearly $129,000 a year for the same type of patients in a skilled nursing facility, according to Department of Care Services estimates. California Medical.

The California program and others like it date back to the 1980s, when an Iowa family complained that their partially paralyzed infant daughter had to remain hospitalized for Medicaid to cover her daily care, even though she could have been cared for. . for home at a lower cost.

The story struck a chord with President Ronald Reagan, prompting the federal government to allow states to waive some Medicaid requirements so people could receive services in their homes rather than in institutions.

But the waivers “did nothing to change what is required to be funded under federal law and what is optional,” said Nicole Jorwic, head of advocacy and campaigns at the nonprofit Caring Across Generations. Because the waivers were created as an optional service, “it can be limited,” and Jorwic said that when budgets are tight, “the first thing that gets cut is the optional services.”

California officials said they have to demonstrate to the federal government that the waiver is “cost-neutral,” and that the average spending per patient is no more than institutional care for the same type of patients.

When the state sought federal approval for the latest round of the program, it said participation would be capped at just under 9,000 people at a time for two years, with annual increases over the next three years to reach about 12,300.

Disability rights and care advocates also emphasize that most people prefer to be cared for at home. The U.S. Supreme Court ruled decades ago that unnecessarily institutionalizing people who can be cared for in their communities violates the Americans with Disabilities Act.

The problem is that “we have an institutional bias in our health care spending,” said Jennifer McLelland, an advocate with Little Lobbyists, which represents the needs of medically complex children. “The State will automatically pay for expensive institutional care, but only pays for cost-effective home care as an optional service. “That’s the opposite of what we should be doing.”

Many states have had waiting lists to access services that allow people to remain in their homes and communities, leaving hundreds of thousands of people across the country in limbo, according to a KFF analysis.

In California, the last time the HCBA waiver program reached its annual limit was six years ago, according to the state Department of Health Care Services. The agency said it believes there was an increase in applicants this year due to increased outreach by local agencies, increased awareness of the program and its benefits and increased interest in home care as a result of the COVID-19 pandemic. 19.

COVID “changed the dynamic,” both because of concerns about infection and because family members were now able to work from home, said Jonathan Istrin, executive director of home care agency Libertana, one of the agencies helping families. people to apply for the waiver program. “People had always had eligibility, but now we had all these people who didn’t want to be in a nursing home.”

Lack of access to the program can have repercussions for families. In Baldwin Park, this is costing the family of 2-year-old Gideon Chavez in multiple ways.

Gideon was born with a heart defect and uses a ventilator and feeding tube, requiring 24-hour care. His mother, Jessica Gonzalez, requested an HCBA waiver, and if she had received it, Gideon would have been able to keep the Medi-Cal coverage she lost in late September due to his family’s income.

When Gideon was on Medi-Cal, he was also eligible for a state program that paid Gonzalez nearly $5,000 a month to be his in-home caregiver. Medi-Cal could also pay for equipment to help Gideon walk, something his private insurance doesn’t cover, Gonzalez said.

With less income and higher out-of-pocket medical costs for Gideon, the family now faces “an additional level of stress,” she said.

“I always find it disconcerting how parents who have children with disabilities or who are medically fragile know how much we have to go through to request something,” she said. Things are already difficult “and I feel that the State makes it even more difficult.”

© 2023 Los Angeles Times
Distributed by Tribune Content Agency, LLC

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