Born just a year apart, Oliver Massengale and his brother Charles grew up together.
Now in a two-story home in Compton, they are growing old together. But Charles Massengale, 71, can do little on his own.
The former tree trimmer has severe brain damage from a 30-foot fall, as well as dementia, diabetes and high blood pressure. Six years ago, Oliver took over as his brother’s full-time caregiver, paid about $10 an hour by the state.
It was not a job he was trained to do.
“I didn’t have a clue,” said Oliver, a retired grounds manager at a college.
He constantly worried — about giving Charles the wrong medication, about him getting bedsores. And he had no idea how easily his brother could fall over. One day, he was cooking and Charles was on a stool at the kitchen counter.
“I heard BAM,” he said. “I turned around and he was on the kitchen floor.”
No overall training is required for the more than 400,000 caregivers in California’s $7.3 billion In-Home Supportive Services Program for low-income elderly and disabled residents. Without instruction even in CPR or first aid, these caregivers can quickly become overwhelmed and their sick or disabled clients can get hurt, according to interviews with caregivers, advocates and elder abuse experts.
The lack of training is “of enormous concern,” said Gary Passmore, a vice president of the Congress of California Seniors, an advocacy organization. “We are dealing with a lot of frail, elderly people.”
The need for in-home caregivers is rising as the elderly and disabled population grows. The demand for personal aides — most of whom work in the home — is expected to increase by 37 percent over the next decade, requiring about 1.3 million new positions, according to research published last year by the New York-based Paraprofessional Healthcare Institute, an advocacy group that also provides training.
The federal government is trying to meet that need by stepping up efforts to expand and train the workforce. But for now, there are no federal training requirements for in-home caregivers. It’s up to states to set them in Medicaid-funded programs like California’s. As a result, training policies vary dramatically.
In California’s IHSS program, clients are in charge of hiring, managing and training their own caregivers. The program stands out because of its sheer size — it is the nation’s largest publicly funded home-care program — and because such a high percentage of caregivers are relatives directly employed by the clients, said Abby Marquand, director of policy research for the Paraprofessional Healthcare Institute.
“It is a lot easier to ensure a minimum level of training if the person is employed through an agency,” she said.
IHSS was never intended to be a medical program. Unlike visiting nurses or home health aides, IHSS caregivers are not certified or licensed and are hired to do personal care and household tasks.
But more than a quarter of IHSS clients are 80 or older, and many have chronic health conditions or dementia. In these and other cases, caregivers can end up providing basic medical care — helping to administer insulin shots, manage other medication or dress wounds, for instance.
When such “paramedical” services are needed, IHSS caregivers are required to get instruction and approval from a health care professional. But the state doesn’t sponsor the training or pay caregivers more for getting it. Only 12 percent of clients have caregivers who have received it.
Eileen Carroll, deputy director of the California Department of Social Services, which oversees IHSS, said the program doesn’t have a lot of training requirements because it was set up to give clients the choice of how they want their care delivered.
For caregivers who want it, the state offers comprehensive voluntary training information online, she said.
Carroll said many people are fully able to direct their own care and supervise their caregivers, but some aren’t. “Our task is how to work harder to support those who have greater need,” she said.
Oliver Massengale, for example, can’t depend on his brother to tell him what he wants or needs — Charles no longer talks much. “Because of the nature of the injuries and his different ailments, he could never train,” Oliver said. “He can’t even take care of himself.”
Every day Oliver sits inches from Charles, checking his blood pressure and blood sugar and coaching him step-by-step on how to inject insulin into his own arm.
“Hold the back of that needle up,” he told Charles on a recent day. “Put it in right there. Now pump the medicine in. Good, good.”
When he heard about a training class in Los Angeles, Oliver said he jumped at the chance.
“If I’d had this class in advance, it would have made it a lot easier,” he said.
A sensitive matter
Whether or not to require training for those who care for California’s 490,000 low-income elderly and disabled home-care clients is a sensitive political — and personal — issue.
Instruction is a positive thing, Carroll said, “but you have a very strong adult disabled community in this program who … oppose any mandatory training.”
Many disability rights advocates say a training mandate would make it more difficult for IHSS consumers to find caregivers, chip away at clients’ autonomy and drain resources from the program.
“The idea of choice is really paramount,” said Deborah Doctor, legislative advocate at Disability Rights California.
Relatives, who make up nearly three-quarters of paid IHSS caregivers, often say they know what is best for their loved ones.
“A mother who has been taking care of a child for 20 or 30 or 40 years doesn’t need mandatory training on how to take care of that person,” Doctor said.
A union that represents caregivers, however, sees advantages to a minimum level of training. SEIU-United Healthcare Workers West proposed a statewide initiative last year that would have required 75 hours of instruction but didn’t get enough signatures to put the measure on the ballot. SEIU plans to try again in 2016.
Requiring training would “save lives,” said Loretta Jackson, who serves on the union’s executive board and is an IHSS caregiver in Sacramento. It would also reduce the risk of injuries to caregivers, she added.
Jackson cares for her sister, who was left partially paralyzed by a stroke 15 years ago. When Jackson first started, she had to call paramedics every few weeks because her sister would fall. Once, Jackson said, her sister took too many pills and started shaking violently.
“I didn’t know what to do,” she said. “I started panicking.”
Government grants
In the meantime, the federal government is putting money into pilot training efforts in various states.
Through the Affordable Care Act, it has awarded about $15 million in grants to California and five other states to recruit and train qualified caregivers for the elderly and disabled populations. Classes started in 2011 in cities throughout the state, including San Francisco, Anaheim and Walnut.
The class Massengale attended is part of a separate federal grant of nearly $12 million given to the California Long-Term Care Education Center in Los Angeles. The center is training about 6,000 IHSS caregivers in Los Angeles, San Bernardino and Contra Costa counties.
An early evaluation of the program by UC San Francisco researchers shows that clients with trained providers are less likely to go to the emergency room or be admitted to a hospital than those with untrained providers.
At a recent session in Compton, about two dozen caregivers gathered in a classroom at the public library, their binders of training materials spread out before them. The topic of the day was preventing bed sores and controlling infections.
A trainer reminded members of the group to wash their hands frequently. “It is one of the most important things an individual can ever do to help control infection,” she said. Oliver Massengale, who is in the class, said he is feeling a little bit more confident about keeping his brother safe. But being a caregiver for someone with so many health conditions is still scary to him.
“As I come down those stairs,” he said, “I am saying a prayer and just hoping that everything is all right when I get to the bottom.”
Kaiser Health News is an editorially independent program of the Kaiser Family Foundation.
Data analyst Ronald Campbell contributed to this report.
