Nathan Chapman’s 25th birthday was a good day.
His gift haul included a My Little Pony belt – equipped with a buckle he can do himself, although he needs help getting it through the belt loops – and a Spider-Man poster joining the menagerie of superheroes, cartoon characters and unicorns on his bedroom walls. He chattered eagerly about using his movie passes and glowed when reminded that, on Saturday, he would don a tuxedo for a special needs prom.
But Cindy Chapman, Nathan’s mother, is worried about worse days on the horizon. Caring for Nathan is Cindy’s full-time job, and California reimburses her for 222 hours of care a month under a program for the disabled. A proposal in Gov. Jerry Brown’s budget would limit her to 160 hours a month.
The loss of income would be a blow, Cindy Chapman said, and she worried about keeping up with house payments as a result. But more than that, she fretted about who will take on the excess hours. Regardless of what the final budget contains, Nathan will need more than 40 hours of attention a week.
Either Chapman could do the work for free, or she could bring in someone else. She said entrusting a stranger with intimate tasks such as bathing her son could be unsettling and disruptive for Nathan, who has cerebral palsy and mental retardation.
“If I were forced to bring someone else in to accommodate for those extra hours, he’s not going to take well to it,” Cindy Chapman said. “This is my house, and having a stranger into my house when I’m going to be here anyway is ridiculous. I am dreading even thinking about having to have someone else in my home.”
The release last Tuesday of Brown’s revised budget blueprint launched the crucial phase of state budget negotiations. A recent federal order requires in-home workers to receive additional pay for overtime, but Brown’s budget would exempt California from the new rule by barring in-home workers from putting in more than 40 hours a week.
Advocates and labor unions have lambasted the governor’s push to limit hours, saying it will financially strain home caregivers and throw into disarray the lives of those, like Nathan, who depend on more than 40 hours of weekly care.
“It is just a way to get around implementing a new set of protections for these home care workers like every worker has, which is the right to overtime,” said Kim Evon, the secretary-treasurer of the 250,000-in-home-supportive-services-workers-strong Service Employees United International-United Long Term Care Workers.
The In-Home Supportive Services Program pays workers to be home attendants for hundreds of thousands of physically and mentally disabled Californians. About 360,000 workers draw a salary from the program, earning between $8 and $12.20 an hour, depending on the county.
Created as a more humane and cost-effective alternative to institutionalization, the IHSS program has evolved from a system of individual cash grants to a network of unionized providers. Paying a family member for watching over a loved one, the thinking goes, is a better deal for taxpayers than placing someone in a state-run nursing home or care facility.
The vast majority of providers – about 70 percent – are, like Cindy, also family members. About 83,000 providers, like Cindy, work more hours in a month than the cap would allow.
Limiting hours for in-home supportive services workers will save California a substantial amount of money, Brown argued. He noted that the program’s cost rose by a quarter of a billion dollars between January and May of this year. The average monthly caseload has ballooned from 317,000 in 2003 to 453,000 in the current fiscal year, costing the general fund about $2 billion. Implementing the federal overtime rules could cost an extra $186 million a year, according to the Legislative Analyst’s Office.
“At the end of the day,” Brown said, “we’ve got to live within the revenue.”
Requiring the state to pay overtime, Brown said, would mean subtracting money elsewhere. With California’s coffers uncharacteristically overflowing, in-home supportive services advocates join a chorus of voices demanding more money for everything from courts to early childhood education.
“If you can find more cookies in the jar, hallelujah,” Brown said.
Under the governor’s proposal, recipients could cover extra hours through new pools of backup providers who would be available on short notice. Providers are skeptical that safety net is workable. It can already be difficult finding enough people to do what is often grueling and low-paid work, and they say the 40-hour cap would disqualify many current providers from enrolling in the new backup pools. Help available on short notice could prove elusive in sprawling rural counties, they argue.
“We’re concerned about our capacity to develop a provider backup system that would be nimble enough to meet consumers’ needs,” said Karen Keeslar of the California Association of Public Authorities for IHSS, which represents the state’s network of county-level agencies.
The Legislature has already secured overtime pay for privately employed domestic workers, enshrining the additional pay in a so-called “domestic workers bill of rights” that passed last year. The In-Home Supportive Services Program was specifically exempted from the bill, irking some providers who see different standards for private businesses and the public support services program.
“It is time for people to rise up and demand that all fees, benefits and laws be equally applied,” Kathy Janz, executive director of Matched CareGivers in Menlo Park, said in an email.
A trio of unions has launched an aggressive push to have the governor reconsider his overtime prohibition. They have recruited workers to regularly patrol the halls of the Capitol and talk to lawmakers. Soon after Brown unveiled his budget on Tuesday, half a dozen Democratic legislators joined a labor-organized rally.
“For these long-term care workers, they are building a relationship with the people they are caring for. It’s not something you can just swap people in and out for,” said Assemblyman Richard Pan, D-Sacramento, a doctor. “The more vulnerable the person is the more important this gets, because when someone has a disability that level of trust needs to be earned, and because they’re more dependent and vulnerable that requires a higher level of attention.”
Policy experts and sympathetic lawmakers also question Brown’s cost analysis. They worry that Brown’s proposal will make relying on in-home supportive services prohibitively expensive and complicated, pushing more disabled Californians into institutions.
“Cutting home and community-based services programs like IHSS is not a good way of saving money,” said H. Stephen Kaye, a professor at the University of California, San Francisco’s Institute for Health and Aging. “What happens is you end up spending more on institutional costs and you also probably spend more on emergency room visits and hospitalization for people who aren’t getting the services they need.”
That’s the outcome Patrick Crossan fears. He quit his job two years ago to assist his ailing mother, who spiraled into dementia after a string of medical issues. He wakes her up multiple times a night to help her go to the bathroom, bathes her, prepares her meals and helps her dress.
It is an exhausting, full-time job. Crossan bills for about 54 hours a week. If someone else takes 14 of those, he believes, the outcome will be grim.
“It’s a loss of income, which is very difficult because we’re already stretched to the limit now, so I’m looking at making some difficult choices,” Crossan said, adding that he worries she will deteriorate quickly if she ends up in a nursing home. “She needs that one-on-one care.”
County social workers determine in advance how many hours of care a person needs, segmenting days into a set of tasks that can include cleaning, personal hygiene and some limited medical help.
Not all supportive services workers are family members. Ann Guerra, who heads the In-Home Supportive Services office for Nevada, Sierra and Plumas counties, worries that those who do not have a close familial connection to their clients will gravitate to other, more lucrative professions rather than settle for 40 hours a week. She isn’t sure her rural region will have a large enough pool of eligible workers who can pick up the slack. But she is most concerned about depriving people of choice.
“To suddenly say to someone, ‘This is a program designed for you and you choose who comes into your home, you choose how they perform these tasks,’ and now suddenly only up to 40 hours, and now you must hire someone else or do without – we have some concerns about that,” Guerra said.