Over the last 25 years, the number of assisted living facilities in California has nearly doubled. The homes are intended to care for relatively independent, healthy seniors, but that doesn’t describe a lot of the people living in them today.
"There’s been a seismic shift in the population they serve," says Deborah Schoch of the California HealthCare Foundation Center for Health Reporting. Schoch says the system was set up to meet the needs of people who could use some extra help with the tasks of daily living –- and it does. But many of those people need a lot of help.
The system, she says, is caring for people "who are frail, who may have dementia, who may be wheelchair bound, who may not be able to turn on their own in bed."
Assisted living facilities are not designed to deliver skilled nursing care, and they do not typically have people with those qualifications on staff. There are no staff-to-resident ratios or many of the other rules that govern nursing homes. While many assisted living facilities do a fine job of delivering care, others are overwhelmed –- or worse. Schoch was the lead reporter for a series called “Deadly Neglect” that detailed 27 deaths in San Diego County assisted living facilities from abuse and neglect.
"I worked with UT San Diego, and we were able to get access to a lot of inspection reports: deaths, injuries, elder abuse, people left on the floor for 48 hours in assisted living facilities in San Diego County."
She's since come out with more stories detailing more troubling incidents, but that first series had a politically explosive effect. In San Diego, Supervisors voted to fund a special unit in the District Attorney’s office to target crime in the facilities.
[Related: Crime in Assisted Living: What Happens After]
In Sacramento, where regulations haven’t changed much in close to 30 years, lawmakers held hearings featuring reform advocates like Aaron Byzak, who started a group called “Hazel’s Army” after his grandmother Hazel died in assisted living. "If somebody parked in my grandmother’s disabled parking lot illegally, they’d be fined $450," he told reporters in the state capitol. "But they kill her, and it’s $150."
Lawmakers were also keenly aware of recent headlines from Castro Valley, where 14 bed-ridden residents were discovered abandoned after the state ordered the facility closed. It turned out the operators had a long list of violations.
You’ll get no argument from the agency charged with oversight of these facilities that it’s time for a revamp. A number of recommendations made in its last annual budget proposal mirror reform bills now pending in the legislature, such as raising the $150 maximum fine to $15,000, and upgrading the online database available to the public. That’s not all. Pat Leary is the Chief Deputy Director of the California Department of Social Services.
"They’re going to create a medical expertise unit, with a nurse," Leary said. "We’re establishing a corporate accountability unit. There are a number of these facilities that are owned by corporations that are making decisions on a statewide basis. But the way that we track facilities is on a one-facility-at-a-time basis -- we’ve been missing trends."
Two women in San Diego were so frustrated with the lack of data and analysis, they created their own non-profit, and their own database for roughly 700 assisted living facilities in San Diego and Imperial Counties, as well as rural Northern California. CARR, the Consumer Advocates for RCFE Reform, (RCFE stands for residential care facility for the elderly) has managed to do what the state hasn’t yet - build a publicly accessible online database with 30,000 documents, including inspection, complaint, and civil penalty reports. Their documents formed the basis of "Deadly Neglect."
CARR co-founder Christina Selder echoes a sentiment heard commonly among consumer advocates. "We find that they’re more of a facility protection agency than a consumer protection agency."
"There are a number of cases where facilities will have repeat noncompliance meetings for atrocious activities," Selder said.
Without providing its name, she mentions a facility CARR uses as an example.
"This particular facility had one resident who was left on the floor in their apartment for more than 24 hours and bled to death," she said. "Same facility, a dementia resident who was unable to consent to have sexual relations with another resident but that repeatedly went on. There was a culture of fear among the staff, and so they weren’t cooperating during the investigation with Department of Social Services. That was the third one for this facility. Now, this facility remains open today. There’s no caution tape on the door."
Her partner in CARR, Chris Murphy, chimes in. "I mean it’s almost like 'what do you have to do to get closed?'"
They've developed some strong opinions after reviewing so many DSS reports. For instance, despite the claims of some that the worst abuses are likely to be more common in big facilities, especially those owned by corporate chains, Selder and Murphy say small homes are just as likely to fail their residents.
Both Murphy and Selder have degrees in gerontology. Both say they’re heartened by all the legislation in Sacramento, especially the bill they sponsored, AB 1523, requiring all facilities to carry liability insurance. [UPDATE: That bill passed, and Governor Jerry Brown signed it into law.] But Murphy worries about the fine print on all the legislation. "If it’s not clearly stipulated within the bill, then it’s left to the regulators, then the regulators are going to come up with whatever they come up with. So I would hope that they get serious about having stakeholders meetings, using all of the expertise that’s available in this state."
Selder worries lawmakers are tweaking a system that is fundamentally dysfunctional. If a growing number of elderly need medical care, Selder says, maybe they shouldn’t be in assisted living. Or maybe assisted living should deliver tiered levels of care, with tiered levels of regulation. But that’s not the discussion on the table in Sacramento - at least, not this year.
"We are behind the curve," Selder says. "Other states have rating systems. Other states have assisted living regulated under the Department of Public Health. We’re not there. We’re not even talking about it in the right way yet."
Polly Stryker contributed to this report.