When Brian Jacobson got out of the intensive care unit five months after a skiing accident in Tahoe, he thought the hardest thing about his new life would be learning how to breathe again. As he returned to his life in San Rafael, a quadriplegic at the age of 42, he found that the health care system would bring additional anxieties to his challenging new life.
“There’s always a lot of hoops to jump through, especially when it comes to qualifying for benefits, because they don’t really kick in until you become low-income,” said Mr. Jacobson, who now lives in Santa Rosa. “It always feels pretty scary when you’re trying to balance that—making enough money to get by, but at the same time qualifying for the benefits you need.”
Unable to afford around-the-clock in-home care, Mr. Jacobson turned to whatever resources he could to receive support. He found help from InSpirit, a nonprofit based in Woodacre that provides financial assistance to quadriplegics for in-home supportive services. InSpirit was founded in 1982 by Woodacre resident Aneice Taylor, a quadriplegic who saw the need for a financial safety net for her peers.
InSpirit has been spearheading an advocacy campaign to raise awareness about health care programs like Medicare and Medi-Cal and patients’ rights. In a Zoom meeting with the Light, its five board members said the support system for quadriplegics in West Marin is dismal. Between the lack of resources and the seclusion of West Marin’s villages, almost all its clients have been forced to live elsewhere.
InSpirit is advocating for changes to the quality of in-home care. For its 14 recipients, the nonprofit provides $700 a month, translating to roughly eight hours a week at minimum wage.
Currently, only two of InSpirit’s clients are ineligible for Medi-Cal because they are married and their spouse’s income disqualifies them. In both cases, the spouse takes on almost all the personal care. A third client who does not qualify for Medi-Cal passed away last summer after struggling to receive a home health aide. Her 70-year-old husband took care of all her personal care needs, according to Marty Meade, a Forest Knolls resident who co-founded InSpirit.
In June, Inverness Park resident Noe Rodriguez was paralyzed from the chest down after a motorcycle crash. Mark Alderdice is helping to organize his recovery, raising funds and planning his return to everyday life. He said bringing Mr. Rodriguez back to West Marin right away just wasn’t feasible, and he instead chose Berkeley for its A.D.A.-accessible infrastructure and rehabilitation clinics.
“It’s my impression that all of us who live in West Marin who are able-bodied—we pay a price in convenience because we love it. If you’re a disabled person, you have to ask yourself, ‘What are the advantages of being in West Marin?’ Noe would still like to [come back], but he’s got a lot of needs that I don’t think are easily met here. He would have to go over the hill to get the same thing he’s getting in Berkeley six blocks away.”
Medicare covers 28 to 35 hours a week of in-home care for people who are unable to leave their homes without assistance and who receive some form of physical or cognitive therapy. Yet those who qualify are often being denied care because of Medicare’s reimbursement system with the agencies that provide caregivers. If an in-home provider agency goes above the minimum required number of visits for quadriplegic patients, they will not receive additional payment beyond the full periodic payment already set by the reimbursement system. This leads many quadriplegics to only receive care in the form of a daily shower.
Mr. Jacobson said there was a moment of reprieve “when we found out about Medicare and these available additional hours.” But, he continued, “it’s not really there for us to take advantage of.”
Ms. Meade said the system has financial disincentives that led to a decline in home health aides. Even if one qualifies for in-home support services, getting a caregiver to come to West Marin is a tough sell with the county’s low wages and long distances. Marin’s wage for in-home support workers is $16.95—the lowest among the Bay Area’s nine counties. Marin is also one of only seven counties in California that does not have an office for stationed in-home support workers, meaning those workers must travel longer distances.
“A lot of our clients need 24/7 care,” Ms. Meade said. “They are usually relatively low-income because they are disabled. This is a silent minority who are being overlooked and we want the public to know of their rights and for our local community to know that we are here to help them navigate the system.”
Ms. Meade said Marin is losing in-home caregivers to surrounding counties that pay a better wage. At $16.95 per hour, the cost of having a full-time in-home caregiver is nearly $150,000 per year, but hiring one’s own caregiver usually comes at twice that rate. Meanwhile, to qualify for additional hours through Medi-Cal, a single-person household cannot make more than $20,000. The eligibility margins are far too wide, said Diana Lopez, a health care assistance advocate for InSpirit who said both patients and caregivers are left struggling to get their needs met.
“The bigger picture is that if rents weren’t driven up, people wouldn’t need so much money to live here,” she said. “People who have a lot of money in savings or make a pension, there’s no other avenue of support except Medicare. If people want to remain living in their homes, they are stuck having to pay for private care.”
In-home care sometimes fails to cover certain needs that could be met by insured physical therapy appointments. But traveling for appointments jeopardizes coverage due to the requirement that individuals remain homebound to qualify for certain services.
Maya Friedman, an executive administrator for InSpirit and caregiver for her quadriplegic mother, Quincy Seitz, said her mother was forced to choose between receiving in-home care or attending physical therapy. Ms. Seitz left San Geronimo in 2010 for Sonoma County. But the services in Sonoma are also abysmal, she said.
“What they pay these folks—you can work at McDonald’s and make more,” Ms. Seitz said. “I rely on them to get me up, get me dressed and feed me breakfast and dinner and put me to bed. It’s hard enough to find someone who first of all cares enough to work that job and then you have to find someone who’s willing to work for that wage. I haven’t found anyone who can. We end up paying that extra money out of our pocket.”
Mr. Jacobson said he was given a series of excuses for why he didn’t qualify for a home health aide and was only offered eight hours for a weekly shower. In 2017, he left Marin to get his master’s in rehabilitation counseling at Sacramento State University. After graduating, he moved to Santa Rosa.
InSpirit is gathering funds for advocacy and policy change. Last June, it received a one-time grant of $37,000 from the Board of Supervisors for investigation and advocacy.