In December, the Food and Drug Administration approved a new anti-obesity drug, Saxenda, the fourth prescription drug the agency has given the green light to fight obesity since 2012. But even though two-thirds of adults are overweight or obese — and many may need help sticking to New Year’s weight-loss resolutions — there’s a good chance their insurer won’t cover Saxenda or other anti-obesity drugs.

The health benefits of using anti-obesity drugs to lose weight—improvements in blood sugar and risk factors for heart disease, among other things—may not be immediately apparent. “For things that are preventive in the long term, it makes plan sponsors think about their strategy,” says Dr. Steve Miller, the chief medical officer at Express Scripts, which manages the prescription drug benefits for thousands of companies. Companies with high turnover, for example, are less likely to cover the drugs, he says.

“Most health plans will cover things that have an immediate impact in that plan year,” Miller says.

Miller estimates that about a third of companies don’t cover anti-obesity drugs at all, a third cover all FDA-approved weight-loss drugs, and a third cover approved drugs, but with restrictions to limit their use. The Medicare prescription drug program specifically excludes coverage of anti-obesity drugs.

Part of the reluctance by Medicare and private insurers to cover weight-loss drugs stems from serious safety problems with diet drugs in the past, including the withdrawal in 1997 of fenfluramine, part of the fen-phen diet drug combination that was found to damage heart valves.

Back then, weight-loss drugs were often dismissed as cosmetic treatments. But as the link between obesity and increased risk for type 2 diabetes, heart disease, cancer and other serious medical problems has become clearer, prescription drugs are seen as having a role to play in addressing the obesity epidemic. Obesity accounts for 21 percent of annual medical costs in the United States, or $190 billion, according to a 2012 study published in the Journal of Health Economics.

The new approved drugs — Belviq, Qsymia, Contrave and Saxenda — work by suppressing appetite, among other things. Saxenda is a subcutaneous injection, the other three drugs are in pill form. They’re generally safer and have fewer side effects than older drugs. In conjunction with diet and exercise, people typically lose between 5 and 10 percent of their body weight, research shows, modest weight loss but sufficient to meaningfully improve health.

The drugs are generally recommended for people with a body mass index of 30 or higher, the threshold for obesity. They may also be appropriate for overweight people with BMIs in the high 20s if they have heart disease, diabetes or other conditions.

In 2013, the American Medical Association officially recognized obesity as a disease.

Nevertheless, “people still assume that obesity is simply a matter of bad choices,” says Ted Kyle, advocacy adviser for the Obesity Society, a research and education organization. “At least half of the risk of obesity is inherited,” he says.

Many people who take an anti-obesity drug will remain on it for the rest of their lives. That gives insurers pause, says Miller.

The potential cost to insurers could be enormous, he says.

Susan Pisano, a spokesperson for America’s Health Insurance Plans, a trade group, says the variability of insurer coverage of anti-obesity drugs “relates to issues of evidence of effectiveness and evidence of safety.”

In 2012, the U.S Preventive Services Task Force, a non-partisan group of medical experts who make recommendations about preventive care, declined to recommend prescription drugs for weight loss, noting a lack of long-term safety data, among other things. But its analysis was based on the older drugs orlistat, which is sold over the counter as Alli or in prescription form as Xenical, and metformin, a diabetes drug that has not been approved for weight loss but is sometimes prescribed for that by doctors.

The task force did recommend obesity screening for all adults and children over age 6, however, and recommended patients be referred to intensive diet and behavioral modification interventions.

Under the health law, nearly all health plans must cover preventive care recommended by the task force without cost sharing by patients. Implementation of the obesity screening and counseling recommendations remains a work in progress, say experts.

Dr. Caroline Apovian, director of the Nutrition and Weight Management Research Center at Boston University, says many of the patients she treats can’t afford to pay up to $200 a month out of pocket for anti-obesity drugs.

“Coverage has to happen in order for the obesity problem to be taken care of,” says Apovian. “Insurance companies need to realize it’s not a matter of willpower, it’s a disease.”

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

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. “I was just so afraid of what I was doing.”

He constantly worried – about giving Charles the wrong medication, about him getting bedsores, about his blood pressure. 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 (IHSS) 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% 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 work force. 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 rather than agencies, 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. The caregivers are distinct from visiting nurses and the certified home health aides often dispatched after a hospital stay. 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 over, 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 by individual clients, 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 on topics such as fall prevention and use of medical equipment, 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.”

The situation worsened recently because Charles’ health insurance plan changed, and he no longer is being visited by a nurse. So 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.

Carroll said the state is in a tough situation. Training is a positive thing, she 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. “Anything that puts a requirement that erodes that choice is a problem.”

Relatives, who make up nearly three-quarters of paid IHSS caregivers, often say they know what is best for their loved ones. And clients are inclined to trust family members and say they can instruct them on what they need.

“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.

Training should be made available to those who want it, but should be entirely voluntary, said Nancy Becker Kennedy, who was paralyzed in a diving accident 40 years ago.

“There is no one size fits all,” said Becker Kennedy, who founded IHSS Consumers Union, a group that advocates for both consumers and workers.  “The population is much too diverse to mandate anything across the board.”

Many other clients agree. Sheela Gunn-Cushman, who is blind, diabetic and has mild cerebral palsy, lives with roommates in San Lorenzo, Calif., with the help of an IHSS caregiver whom she trained herself.

“I don’t feel like anyone is capable of training a [caregiver] about what I need better than I do,” she said. “I am capable of telling them what I need.”

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 training, but the union didn’t get enough signatures to put the measure on the ballot. SEIU plans to try again for the 2016 ballot.

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.”

Other caregivers tell similar stories.

Ariana Ramos, 28, who is taking a training class, said a paralyzed client got a bed sore after sleeping in his wheelchair. Ramos thought it would heal on its own, but it just got worse.

“Now I know that we need to keep it covered up,” said Ramos, who lives in South Gate. “Now I know about bacteria and all the things that could get in a bed sore.”

Caregivers without any medical background or training may not know when to call 911 or how to recognize a heart attack or stroke, said Frances Chuc, who takes care of her paralyzed husband at their home in South Gate and was trained as a nurse aide before she met him. “That person could die in their hands.”

A little bit of training can go a long way, said Joanne Spetz, director of UC San Francisco’s newly created Health Workforce Research Center. It can help caregivers recognize when their clients are having bad reactions to medications, for instance, or help them safely lift a person to avoid falls.

Training can also reduce turnover in a field that has low job retention, said Marquand of the Paraprofessional Healthcare Institute.

Several states are experimenting with different models of training. Washington State, for example, began requiring 75 hours of training for home caregivers in 2012.

It doesn’t make sense that caregivers in the home require less training nationwide than caregivers in nursing homes, said Charissa Raynor, executive director of the SEIU Healthcare NW Training Partnership, which trains 40,000 providers annually. (Certified aides in nursing homes are required by the federal government to have 75 hours of training.)

The Washington initiative, Raynor said, will help professionalize the workforce, reduce on-the-job injuries and lead to better care.

But not everyone has been happy with the new mandate.

“There are a lot of folks who just want to be a caregiver in someone’s home,” said Betty Schwieterman, director of systems advocacy at Disability Rights Washington. “They are not on a career path.”

Grants From The Government

The debate over mandatory training is far from resolved. But 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.

Corinne Eldridge, who runs the program, said trained caregivers can play an important role on a client’s health care team. “They can be the eyes and the ears in the home … and communicate back to the health care provider,” she said.

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.

The teacher, nurse Lori Picou, asked the class about the signs and symptoms of infection. The students yelled out answers: Redness. Fever. Fluid or discharge.

One offered a story about a bruise that swelled up like a basketball. Another said her paralyzed son was sweating so much that she had to repeatedly change his shirt.

Picou reminded 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. “The more I learn, the better I am to cope with this,” he said.

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.”

Blue Shield of California Foundation helps support KHN coverage of California.

The California Endowment helps support KHN coverage of California.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

https://kaiserhealthnews.files.wordpress.com/2015/01/caregiver-long-final.wav

>> Can’t see the audio player? Click here to listen to audio of this story.

Yolanda Farrell lay mostly paralyzed in a nursing home, unable to feed or dress herself, when her homeless daughter persuaded her to move out.

Linda Maureen Raye, who relatives say had been living in her car with her dog, used her mother’s Social Security to pay for a one-bedroom Riverside apartment and took over as Farrell’s sole caregiver in 2010.

Over the next two years, according to police and court records, Raye took her elderly mother to the doctor once. As her mother’s health declined, Raye stopped cooperating with a nurse sent to advise her on preventing bedsores.

Yet in 2012, Raye was hired officially: She began collecting about $900 a month from taxpayers under the state’s in-home care program for poor people, according to law enforcement authorities.

By the end of that year, Farrell, an 85-year-old former real estate underwriter who loved to travel, had died of septic shock resulting from severe bed sore infections. Originally charged with murder, Raye, 60, pleaded guilty to elder abuse in September and was sentenced to 11 years in prison.

“She essentially neglected her to death,” said Riverside Police Det. Christian Vaughan, who investigated the case.

California’s frail elderly and disabled residents increasingly are receiving care in their own homes, an arrangement that saves the government money and offers many people a greater sense of comfort and autonomy than life in an institution. Yet caregivers are largely untrained and unsupervised, even when paid by the state, leaving thousands of residents at risk of possible abuse, neglect and poor treatment, a Kaiser Health News investigation found.

The move from nursing-home to in-home care is part of a massive shift across the nation, driven by cost-cutting and patient preference. In California, at least four times more elderly and disabled residents receive in-home care than live in nursing facilities – a rate that is only expected to rise as baby boomers age.

Many families either provide care for relatives without compensation or pay out of pocket for caregivers they find through word-of-mouth, referral agencies or private companies. But a growing number of elderly and disabled people have incomes low enough to qualify for state-funded care under the In-Home Supportive Services program, or IHSS – the same one that paid Raye to care for her mother.

California’s $7.3 billion IHSS program is the largest publicly funded caregiver program in the nation. The caseload has more than doubled since 2001 and now serves about 490,000 low-income clients throughout the state.

Working behind closed doors for an average of about $10 an hour, these caregivers carry immense responsibility but are subject to little scrutiny, according to law enforcement officials, elder abuse investigators, senior care experts and court records. Their lapses sometimes lead to preventable injuries and death.

Many clients are too feeble or afraid to complain or ask for assistance. “We don’t know how many times Yolanda cried for help,” Det. Vaughan said.  “She didn’t have a voice. She was deprived of that.”

Kaiser Health News’ investigation into the IHSS program found that:

* Training for caregivers is minimal and mostly optional. California doesn’t require training for everyone – even in CPR, first aid or preventing injuries. By design, IHSS is not a medical program and caregivers are supposed to confine themselves to tasks such as feeding, dressing or bathing. But some become ad hoc nursing aides, helping to dress wounds and manage medications. The state requires caregivers receive training and authorization from physicians in these cases, but only about one in nine caregivers receives it, officials say.

* Most clients in California, 73 percent, are related to their caregivers, up from 43 percent in 2000. The arrangements assume an inherent trust between client and caretaker – a trust that can go awry when the relationships are dysfunctional, abusive or financially driven. While many states allow some paid family caregiving, most prohibit spouses from taking the job and some bar relatives entirely. California has no such restrictions.

* Screening, though improved in recent years, has potentially dangerous gaps. State law requires criminal background checks and bars people from becoming caregivers if they have been convicted of certain crimes, such as elder and child abuse. But the IHSS program leaves the hiring to clients and gives them wide latitude. Felons convicted of robbery, rape or assault can be paid caregivers if their clients get a waiver from the state.  In the past four years, more than 830 people have received such waivers for caregivers convicted of serious offenses. “They can have criminal records, they can have drug addiction,” said Susan Strick, a prosecutor with the Los Angeles City Attorney’s office. “That’s a problem.”

* Few incidents of abuse and neglect by IHSS workers are documented because authorities aren’t looking for them. County social services workers are supposed to check on the clients once a year on the state’s behalf but are not primarily focused on the quality of care provided. Their main job is to determine whether clients are receiving the proper number of hours of care and whether their needs have changed. And because social workers are assigned hundreds of clients each, their visits are frequently brief – as short as 30 minutes a year.

Counties are also supposed to report to the state “critical incidents” –potential neglect, abuse or self-harm requiring immediate action. But reporting practices vary widely, yielding puzzling results. In fiscal year 2012-2013, for instance, not a single critical incident was reported among the 235,000 clients in Los Angeles, Orange and San Diego counties, the three largest in the state. That same year, smaller Sacramento County reported 1,688 incidents – accounting for most of the problems reported statewide.

“There is no evidence indicating that Sacramento County has a disproportionately higher number of critical incidents than other counties,” a Sacramento county spokeswoman said.

Beyond statistics such as these, nearly all records of IHSS are confidential. So unless a caregiver is criminally prosecuted, the details of any alleged mistreatment are unavailable to the public.  Prosecutors and experts on elder abuse say only a small fraction of problems come to light. When they do, it is sometimes too late.

Neglect and abuse by paid home caregivers happens “far more regularly than we know,” said Paul Greenwood, a national expert in elder abuse and a prosecutor with the San Diego County District Attorney’s office. “We are still scratching the surface.”

Eileen Carroll, deputy director of the California Department of Social Services, which runs IHSS, said the program “works very well for people who are capable and able to self-direct.” She acknowledged that more problems can arise when clients are older than 85, for instance, or have dementia.

In general, she said, the state tries to ensure that clients are receiving the services they need safely in their homes without compromising their independence.

The state recently has made improvements to its quality assurance program and has clarified reporting standards for critical incidents, she said.  But mandating training or increasing oversight further could fundamentally change IHSS from a program based on the consumers’ social needs to one based on their medical needs, she said.

“It’s a slippery slope,” she said. “I don’t think it is in our interest to force recipients and providers to do anything.”

Clients Are The Bosses

The In-Home Supportive Services program has its roots in the 1950s, when a small group of polio patients was moved out of Rancho Los Amigos Hospital, a rehabilitation center in Downey. Officials recognized that it would be less expensive for people to be taken care of in their homes, and the March of Dimes began to pay for domestic help.

The current in-home care program, created by the state legislature in 1973, retained the historical emphasis on supporting clients’ autonomy. The state pays the bills, but the elderly or disabled resident is the boss – responsible for hiring, firing, supervising and training the caregiver.

To be eligible, most clients must qualify for Medi-Cal, the state insurance program for the poor, and be over 65, blind or disabled. They also must show a need for help in the home.

Many swear by the program.

“I get to continue making choices,” said Margaret Belton, 82, who receives help seven days a week from IHSS caregivers at her Pasadena apartment. “When you go into a nursing home, you lose your ability to make decisions.”

Belton, a former nurse with arthritis, diabetes, thyroid problems, hip and knee replacements and a history of falls, said she appreciates being able to train her own providers.

But for others, supervising a caregiver can be a struggle. That is especially true when clients are very old, severely physically or mentally impaired or when the employees are family members with whom clients have difficult relationships.

The IHSS program can be a “perfect scenario for elder or dependent abuse,” said Julie Batz, staff attorney at Legal Assistance for Seniors in Oakland. The clients may trust the providers because they share a history or because they assume that the government has screened and trained them, she said, but “that is not necessarily true.”

Toni Giusto, 54, said she trusted Yvonne Belanger, her domestic partner of many years, with her life. The Oakland woman hired Belanger as her IHSS caregiver in 2000, after an abscess in her neck left her paralyzed from the waist down. Giusto said she needed help with everything – eating, bathing, sitting up.

Instead, Giusto said Belanger locked her in a room. “She wouldn’t give me water or nothing,” she said. Belanger didn’t take her to the doctor, even when she developed bed sores that attracted maggots, Giusto said. Belanger sprayed bug poison on her to get rid of them, according to court papers.

Responding to a call from Giusto’s sister, police came to the house in 2010 and found Giusto with 23 open sores and an abdomen swollen from waste backed up in her bowels, according to court papers. Belanger was convicted of elder abuse and sentenced to county jail. She died last year.

“I was so trusting,” said Giusto, who now lives in a rehabilitation facility in Alameda. “I never thought she could do this to me.”

For some clients, choosing a caregiver is less about trust than about mutual need. The parents of Erica Aguirre, now 29, knew she had a drug problem. But they needed help and she needed money, so they applied to IHSS and hired her.

For about two years, Aguirre said, IHSS paid her to care for her 72-year-old mother, Guadalupe, who has asthma, diabetes, high blood pressure and depression, and her father, Jesus, 69, who has heart problems, diabetes and early dementia.

Guadalupe Aguirre said she and her daughter soon had arguments that ended in yelling and hitting. “I thought she was going to be different than she was,” the mother said in Spanish.

In 2012, Erica Aguirre was charged with physically and verbally abusing her mother. She was convicted and sentenced to 60 days in county jail and drug treatment, according to court documents.

In an interview at the family’s home in South Los Angeles, Erica Aguirre said she is a recovering drug addict and also suffers from depression and anxiety. Despite that, Aguirre said she followed doctors’ instructions and tried to help her parents. She said she quit working as an IHSS caregiver before her criminal case began.

“I tried my best as a caregiver,” she said. But “I wasn’t the appropriate one.”

Deborah Doctor, a legislative advocate at Disability Rights California, said there is nothing to suggest that the IHSS program fosters abuse or that people are less safe at home than they would be in an institution. The best way to ensure a high quality workforce is to pay caregivers better – not to increase regulation, she said.

“I am sure there are some bad actors but the efforts to quantify that have never come up with anything more than a minuscule perspective,” Doctor said.

Focus on Fraud

Martin Hernandez, an IHSS social worker in Los Angeles County, has a tough job.

He has about 440 active cases, including people with multiple sclerosis, diabetes, mental illness and a history of strokes. He is generally expected to visit each client once a year, though occasionally he sees someone who hasn’t been visited in two years.

Even once a year is “not enough to tell who is being harmed and who is not being harmed,” he said. “It’s very hard unless a neighbor calls or you see some kind of physical evidence.”

His colleague, Gloria Daniels, said she has an even higher caseload – 493 clients. “The program is so big that it appears nobody knows what to do,” she said. “We are being told it’s quantity, not quality.”

In Los Angeles County, the most populous county in the nation, social workers have an average of 265 clients each. Under their union contract, their caseloads aren’t supposed to exceed 249. Above that, workers can’t be held to the usual disciplinary standards. But other counties have even higher ratios – in Riverside County, case workers average about 500 clients each.

There are no statewide standards for how many cases a social worker can carry. Carroll said in some smaller counties workers have caseloads as low as 7. In the areas with high caseloads, she said, the state has been urging counties to hire.

“We do want to see cases become better balanced,” she said.  “We do want to see [clients] assessed every year.”

During their visits county workers focus much more on possible fraud than on quality of care, statistics suggest. From 2008 through 2012, workers in the five most populous California counties – Los Angeles, San Diego, Orange, Riverside and San Bernardino – reported 960 cases of fraudulent overpayment to caregivers. During that same period, the workers reported a total of 32 “critical events” – potential neglect, abuse or self-harm.

The state has another limited quality assurance program that aims to ensure clients are safe and that county workers are following proper procedures. Inspectors conduct “desk reviews” of case files and other documents, along with a very small number of home visits. In 2013, just 3.8 percent of IHSS cases were reviewed under the program.

Since last summer, more desk reviews and unannounced visits are taking place, Carroll said.

Case workers – and caregivers – are required by law to report suspected abuse or neglect. But IHSS officials and family members mostly depend on another state agency, Adult Protective Services, to investigate those concerns.

This agency is also spread thin and has limited powers, according to state records and interviews. Even if workers suspect abuse or neglect, they generally can’t remove an adult from the home without his or her permission.

“We cannot force anybody to accept our services,” said Stacey Lindberg, program manager of Adult Protective Services in Orange County. “It is heartbreaking.”

Suffering In Seclusion

The result, in some cases, is prolonged abuse and neglect by IHSS caregivers. Examples can be found in court records throughout the state.

In Fresno, a 26-year-old woman, disabled by a severe spine condition, hired her brother and his wife as IHSS caregivers. Police and prosecutors say the couple, Joe and Denise Roman, didn’t turn her in bed, and her tissue broke down so much that metal rods in her spine became exposed. She died and the caregivers were convicted in 2011 of abusing her.

In Lake Isabella, Kern County, Joseph McCoy was a paid caregiver over many years for his 90-year-old grandmother, who raised him. McCoy left her unattended, and officials discovered her stuck to her sheets with gruesome bedsores in a fly-infested room, according to prosecutors. She died shortly afterward. McCoy was convicted in 2012 of elder abuse.

“This was a really, really horrible case,” said Michelle Domino, Kern County deputy district attorney. “She had clearly been left neglected for some time.”

In Yolanda Farrell’s case, relatives say they are stunned that Linda Maureen Raye even was able to become a paid caregiver for her mother. Farrell was unable to walk and had very limited use of her arms as a result of a bout with polio years earlier. Linda Maureen Raye had longstanding emotional problems, her brother Terrence said. She’d tried to take care of her mother in the past but always found herself overwhelmed. “My mom would always try to believe that she was better,” he said.

Linda Maureen “went behind our backs and convinced my mom that she would be better off being taken care of in a private residence with her,” Terrence Raye said. Later, he said, Linda Maureen told him that she needed the IHSS funds as well as Farrell’s Social Security money.

Terrence Raye said she wouldn’t allow him to visit his mom, or even talk to her, so he called police and adult protection authorities. They interviewed his mother in Linda Maureen’s presence, he said, and told him they found nothing wrong.

The last time he saw Farrell was at Riverside Community Hospital, where she had arrived sickened from ulcers that went to the bone.

“My mom was old enough and in bad [enough] health never to recover,” he said.

Blue Shield of California Foundation helps support KHN coverage of California.

The California Endowment helps support KHN coverage of California.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Donna Giron is frail. She has Crohn’s disease and uses a wheelchair to get around because walking exhausts her.

But she doesn’t want to be in the nursing home where she has lived since May.

Giron, 65, is looking to rent a small house in the industrial town in the Cleveland suburbs where she grew up. Using federal funds from a special project, thousands of elderly and disabled nursing home residents have been able to move into their own homes in recent years. The experimental project has reached people in 44 states, including more than 5,400 in Ohio. It connects people to the medical and living support they need to move into private homes, so that they can live independently.

But often the housing is the sticking point. Giron doesn’t have family members who could take her in, so she’s house-hunting. As she tours one likely prospect, she manages to get out of her wheelchair to maneuver down some stairs; at the bottom, Giron looks out a window at the front porch and says she can picture herself sitting outside watching the neighborhood.

Then, she sees the kitchen.

“Oh, we even got a dishwasher! Oh, my goodness gracious. Yeah, I want this one. I want this one,” she says, laughing.

Despite her health problems, Giron feels out of place in the nursing home, where many residents are older and sicker than she is.

“I’m a very independent woman,” she says. “I have been for most of my life. I mean, I’ve had to be.”

But independence is difficult to achieve. And until recently her health insurance – Medicaid — has been the roadblock. Ohio Medicaid director John McCarthy explains that the federal program that offers health coverage for the poor and disabled is primarily set up to help people live in nursing homes.

“It’s the housing that’s the hard part, because Medicaid will not pay for housing costs, meaning room and board,” McCarthy says. “It will only pay for room and board in institutions.”

If Giron finds a home, she will have to pay rent out of her small pension. But as part of this experimental program, Medicaid will pay for the costs of setting up house: house-hunting, deposits for rent, and the purchasing of household items like furniture. Perhaps most importantly, it provides a transition coordinator to help find the home and connect Giron to services she’ll need, such as home health workers.

“It is a lot of work,” McCarthy says. “These are not easy cases to deal with. It’s not like you just find somebody and move them. It takes a lot of time and effort to make this happen.”

Many in the program are older and disabled like Giron. But most in Ohio are actually younger than 65, often with physical or mental challenges that make finding the right housing particularly difficult.

In every category, though, making it possible for these Medicaid recipients to live on their own saves the state and federal government money. McCarthy and his team estimate that the average costs for an individual in the experimental program (which is called Money Follows the Person) is $49,000. Under traditional Medicaid it costs about $64,000 annually for nursing home care in Ohio.

The state’s Republican administration believes so strongly in this project that it stepped up efforts to transition people into it three years ago, right after the project was funded again, under the Affordable Care Act.

Ohio, Texas and Washington account for 40 percent of the nation’s home placements since the federal project began.

The program is very popular with beneficiaries, policy makers and even some nursing homes, but there are still two big challenges. For one, funding for the program was extended under the Affordable Care Act in 2010 but is set to expire in September 2016.

And, secondly, people like Giron who are waiting to get a home are finding it very difficult to find one that’s affordable.

“I just want my own place,” Giron says. “I don’t want anything fancy. I just want something to call my own. I just want to be in my own home. I just want to live my life normally like most people do. I want to be on my own. I want to be happy.” She starts to cry.

Giron did not end up getting the little, two-story house with the dishwasher. But she did get some good news for the holidays: In late December, she signed a lease for a different place and is slated to move into the home in January.

This story is part of a reporting partnership with Ideastream, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.