Even then, their inquiries are often perfunctory, said Chris Murphy, whose group, Consumer Advocates for RCFE Reform, tracks deaths, neglect and mistreatment in Southern California assisted living facilities.
Murphy, who has a master's degree in gerontology, said she started her organization after witnessing problems at a facility where her mother lived. She said she has only become more disturbed with California's lack of oversight over time.
"Nobody’s accountable," she said. "The citations are meaningless. It's a charade, in my view."
In 2007, workers at an Emeritus assisted living facility in Oceanside, Calif., found Irene Elliott, 98, lying in the dirt beneath her window, cold to the touch. It appeared she had jumped or fallen. The drop from her second floor window had fractured her pelvis, two vertebrae, left elbow and multiple ribs.
State investigators were called to look into the death. After a one-day probe, an inspector decided that the facility was in "substantial compliance" with the law. The facility, which insisted it had done nothing wrong, was not cited by the state.
According to court documents and the Medical Examiner's report, however, Elliott, who suffered from dementia, had been exhibiting increasingly erratic behavior. Her family contends that the facility was aware of her issues, but didn't take action to prevent the fatal incident from occurring. Despite her deteriorating mental condition, Elliott wasn't moved into the building's memory care wing, a secure space for people with Alzheimer's and dementia.
In court papers, the company maintained it had responded promptly to the changes in Elliott's condition and said there was "no basis" for transferring Elliott to the memory care wing.
Elliott's family sued the company that owned the facility, reaching a settlement in 2008.
One of the central challenges for families searching for appropriate assisted living facilities in California is the dearth of information about their regulatory histories.
The state doesn't post inspection reports or complaint investigations online.
In 2009, University of California-San Francisco professor Bob Newcomer received a roughly $600,000 grant to overhaul the Department of Social Services' information technology systems. The goal was to improve how the agency collected data on assisted living, and to make that data more accessible to the public.
Newcomer and his team designed a new coding language that would make it easier for the department to pinpoint the most troubled facilities and track the most persistent types of violations across the state. The new system would also allow the department to post inspection results online, giving the public instant access to crucial information about facilities.
Today, some four years later, the department has yet to implement the system, making it difficult for the state to analyze even the most basic data.
"It’s a complete embarrassment," said Newcomer, now a professor emeritus at UCSF.
Leary, who was appointed to her position in 2011, said she was unaware of Newcomer’s efforts and does not know why they stalled. She said she supports updating the department's information systems.
"We have to have a system that's actually in real time, and up to date, regarding a facility's status," she said. "Currently, we can't do that."
As assisted living facilities take in increasing numbers of sicker, frailer residents, Leary also acknowledged that her agency needs to do more to set and enforce staffing requirements.
State officials say they want to draw upon the wisdom of families, the industry and experts in senior care in determining what needs to be done. But to date, there's little evidence that such a conversation has begun, and as a result officials have not proposed any significant legislative changes to enhance regulatory oversight.
Advocates for the elderly are frustrated by the lack of action, and furious about some of the pullback.
Murphy is proposing a radical revamping of California's oversight apparatus. The first step: To place regulation of assisted living with the state Department of Public Health, which monitors hospitals and other medical facilities.
The California Advocates for Nursing Home Reform, in a soon to be published paper, are calling for wholesale reforms.
"The only thing that has ever worked with the department is lawsuits," said McGinnis, who heads the advocacy group. "And that’s a hell of a way to make public policy."
Chapter 2: "The Industry is Smart"
A decade ago, the assisted living industry was exploding in Iowa much as it was in California. But problems had been emerging, and to many it became clear the state's Department of Elder Affairs was not up to the task of overseeing the care being delivered to thousands of seniors.
The Des Moines Register reported in 2002 that caregivers at some facilities had physically abused residents. At one, reports showed, an incontinent resident was left to wear the same adult diaper for five days. The paper also documented that the Elder Affairs agency had not imposed penalties on any assisted living facilities for violating standards of care, and that it had sanitized inspection reports to hide deficiencies before releasing them to the public.
Two successive governors, Tom Vilsack and Chet Culver, moved to get more serious about regulating the industry. In 2002, Vilsack shifted responsibility for overseeing assisted living to the Department of Inspections and Appeals, which already oversaw nursing homes and hospitals in the state. Culver, who took over as governor in 2007, appointed a lawyer who had once worked in the attorney general's office to serve as the agency's director.
The lawyer, Dean Lerner, was no stranger to taking on influential industries, having gone after petroleum companies for the cost of cleaning up underground gasoline leaks.
"I knew what I was getting into," Lerner, in a recent interview, said of his dealings with the assisted living industry. "I knew that the industry was very powerful politically in the state."
If forewarned, Lerner said he still was not fully prepared for what became four years of grueling confrontation.
During his tenure, Lerner said he tried to both enhance the regulations themselves and embolden enforcement of them.
He had some successes. He helped persuade legislators to close a loophole that delayed the posting of state inspection reports for months, even years, while facility operators appealed the findings. He took swift legal action against an assisted living company for false advertising and launched an investigation into consumer fraud in the industry.
But some of his efforts ran into stiff resistance. For instance, proposed legislation aimed at preventing elected officials, industry representatives and others from interfering with investigations of assisted living and other senior homes went nowhere.
The battles left Lerner exhausted and fatalistic.
"In every meeting I ever had with them, they would fight tooth and nail against any enhanced regulatory oversight or any public disclosure," Lerner said of the industry and its lobbyists. "Their goal in every meeting? More money, less regulation, minimal public disclosure."
Today, the central regulations governing assisted living in Iowa are much as they were when Lerner took over. The state is required to conduct inspections of assisted living facilities every two years and can assess civil penalties of up to $10,000 for neglect or abuse that results in fatal injuries. Iowa also requires assisted living facilities to be overseen by a registered nurse and that caregivers working with people with Alzheimer's and dementia receive a minimum of eight hours of specialized training within 30 days of employment.
Even though the rules are more demanding than those of many other states, Lerner and other advocates say they remain inadequate to meet the growing challenges in assisted living.
In a statement, the Iowa Health Care Association, the trade group that represents assisted living companies, said Lerner was biased against the industry, exaggerating its problems and turning a deaf ear to its legitimate needs and concerns. The association said it has always welcomed responsible oversight, and has worked in good faith with legislators and others to define and enact practical and effective regulation.
But others, and not just Lerner, say the industry has worked hard to keep regulations superficial. Over the years, nursing homes and assisted living facilities have banded together, impressing upon lawmakers their status among the state’s largest employers. Too much regulation, they have made clear, could drive those jobs out of the state. Today, more than 50,000 people are employed in Iowa in what are known as long-term care facilities.
"The industry is smart," said Brian Kaskie, associate director of the University of Iowa Center on Aging, who has closely followed long-term care issues in the state. "If you look at campaign contributions, they’re not huge. They keep a low profile. They don’t spread a lot of cash around. When they do, it’s very targeted. They spend as little possible in order to have the capacity to stop [tough regulation]. They frame it as, 'We’re your city‘s largest employer.' In Iowa, long-term care is a $2 billion industry."
James C. Larew served as general counsel to Culver, and said he heard often from the industry about its unhappiness with tough regulation.
"I didn’t see a more powerful interest group in Iowa than the nursing home and assisted living industry," Larew said. "They are very effective and there's simply no countervailing weight on the other side."
More Articles
- Facing Financial Ruin as Costs Soar for Elder Care
- Department of Labor Awards $5M to Train, Expand Pathways for Women for Registered Apprenticeships, Nontraditional Occupations
- National Institutes of Health: Common Misconceptions About Vitamins and Minerals
- A Yale Medicine Doctor Explains How Naloxone, a Medication That Reverses an Opioid Overdose, Works
- Kaiser Health News Research Roundup: Pan-Coronavirus Vaccine; Long Covid; Supplemental Vitamin D; Cell Movement
- How They Did It: Tampa Bay Times Reporters Expose High Airborne Lead Levels at Florida Recycling Factory
- Kaiser Family Foundation (KFF): Over 200,000 Residents and Staff in Long-Term Care Facilities Have Died From COVID-19
- The National Institutes of Health Report Details 20 Years of Advances and Challenges of Americans’ Oral Health Which Plays a Central Role in Overall Health
- A Scout Report Selection: Science-Based Medicine
- Journalist's Resource: Religious Exemptions and Required Vaccines; Examining the Research