Many of us dream of starting a revolution. Few of us make it happen. One of the most dramatic stories of the last year belongs to a loose collection of activists, working to reform assisted living oversight in California. Together with lawmakers, these activists launched 17 bills in Sacramento, 12 of which passed, 2 of which have become law, so far.
It’s a big story, but let’s break off one piece, involving a couple women in San Diego with a passion for raw data, strong coffee and home-baked muffins.
About a decade ago, Chris Murphy’s mom was suffering from Stage 4 ovarian cancer. She couldn't live on her own. Someone suggested Murphy check out an assisted living facility, and so she took a tour.
“This is really a cool place," Murphy says she thought at the time. "Maybe my mother would like to live here. I would like to live here. I was sucked in by the chandeliers, and by the garden, and by the apparent appearance of the facility."
Sitting in her home office today, with a fan going to hold off the summer heat, Murphy declines to go into detail about how, exactly, her mom died. Murphy eventually sued and settled.
But she continued to stew over it.
"I didn’t know that there was a public record that I could review," she says. "I didn’t know that the facility had had a wrongful death lawsuit against it. That was not in the public record, even when I was able to review the public record, after the lawsuit. I figured that because they were licensed that the state had some meaningful oversight of this facility, only to discover that it was haphazard, in my view, at best."
Murphy was retired from a career in defense contracting, but she decided to go back to school at San Diego State and study gerontology -- the social and psychological aspects of aging. That’s where she met Chrisy Selder. Selder was doing her thesis on the idea that people who don’t need round-the-clock, licensed nursing care would be happier in homier assisted living -- which happens to be significantly less expensive than skilled nursing care. It’s a commonly accepted idea in California, where the number of assisted living facilities has doubled in the last 25 years. But Selder's thesis fell apart after she worked in a few facilities and interned in the local ombudsman’s office. The more research she did, she says, the less she thought that assisted living really was a good alternative to nursing homes.
Recognizing a kindred spirit, Selder joined Murphy to launch a non-profit called Consumer Advocates for RCFE Reform, or CARR. (An RCFE is regulator-speak for Residential Care Facilities for the Elderly. Most of us call them "assisted living facilities.")
"There were a lot of things that I learned in that process," Murphy says, "that if I had known at the front end, I may have made better placement choices for my mother. And then I decided I had a lot of information that could be leveraged for the consumer.
What CARR did was create an online database of facilities and public records to give consumers "immediate access to a facility's public documents," it says on CARR's website. Before CARR, this online access did not exist.
There are more than 700 facilities on CARR's website today, including about 30,000 public documents "harvested" by Murphy, Selder and volunteer student interns from San Diego State's programs in criminal justice, gerontology, social services, and public health.
Except for the website administrator, everyone at CARR is a volunteer. It’s going to take them a long time to get the whole state catalogued. So far, they’ve got San Diego and Imperial Counties, parts of Orange County, and several small, rural counties in Northern California. They've also got CalVet facilities. Given their non-existent public relations department, the database was a bit of a trade secret, until the day a health reporter named Deborah Schoch did a Google search and turned up CARR’s site. Schoch is with the Center for Health Reporting at USC, and she spotted the raw material for a series of investigative reports.
"They went in and hand scanned thousands and thousands of documents," Schoch says. "We were able to use those to detect certain homes and then went in and scanned our own records, and found more homes like that. But (CARR) gave us an entry point. I have to tell you, some of these folders are 3 inches thick, and there may be two of them, and they’re very difficult to navigate. You just have to go through it page by page by page. There’s nothing that says right up front 'somebody died here.'"
Schoch joined forces with UT San Diego to detail 27 deaths in San Diego County assisted living -- deaths caused by neglect and abuse. The series they published, “Deadly Neglect,” was one of several media exposes that inspired those 17 bills in Sacramento.
You might think it odd CARR collects the same data the state does, but if you want to get at state data, you have to call your local Department of Social Services office, and wait for staffers to pull the data on the facilities you're interested in. Murphy says people don’t realize how hard it is to research -- until time is tight and the stakes are high.
"You’re going to take off three days worth of work," Murphy says. "You’re going to make a California records act request. The state of California is going to tell you when you can come in and look at that file." Meanwhile she says, your dad is leaving the gas on after he cooks. Or the facility he’s living in now has issued a discharge notice with a deadline.
That, and the files are edited to remove data considered "non-public" by somebody in Sacramento. Schoch, who put in a Public Records Act request for some facility files, discovered some of the records removed included those detailing injuries and deaths.
CARR’s database makes all the inspection, complaint, and civil penalty reports it collects available online for a small fee ($25 a month). Murphy says they have about 30 subscribers at any given time, including placement agencies and attorneys, as well as families looking to place their parents.
"We needed a little bit of revenue. And a little bit of revenue is all we’re getting!" Murphy says and explodes into laughter.
Over the years, Murphy and Selder’s jaundiced opinions have only hardened. From their vantage point, elbow deep in documents, the profit motive leads managers to cut corners. Regulations are enforced unevenly. The problems afflict facilities of all sizes, not just the big, corporate ones. Lobbyists in Sacramento will argue small facilities shouldn’t be regulated as tightly as large ones. Selder disagrees. "There’s no cluster. [Facilities with] 6 beds are having just as much problems as the125 beds."
Murphy and Selder don’t rate facilities, because, they say, individual needs are so different. They prefer to upload raw data. This year, they did something they've never done before: sponsor a bill. AB 1523, now signed into law by Gov. Jerry Brown, mandates all assisted living facilities carry liability insurance. While some owners of small facilities protested they won’t be able to afford the coverage, there’s wide agreement consumers have little recourse to address serious concerns given what many describe as light oversight from state regulators.
In a statement CARR issued after the governor signed AB 1523 into law, Murphy and Selder wrote that they hope the law encourages insurance companies to “weed out the poor performers” the state hasn’t managed to, and lead to the closure of facilities that are “un-insurable.”
The legislation was co-authored by State Assembly Speaker Toni Atkins, who represents San Diego.
"I was absolutely shocked to learn that facilities didn’t carry liability insurance," Atkins says. "I had a hard time understanding how any business, in this day and time, and particularly a business that deals with frail, elderly people, could not have liability insurance."
Speaker Atkins says the evidence presented by “the Chrises” helped build a data-driven case in Sacramento for substantive reform. "Typically, as a legislator, you want to see the data," Atkins says. Murphy and Selder, she says, "Set about compiling that data, and putting it front of people."
For those who wanted to see substantive reform of assisted living facilities in California, it's not clear yet how many of the original 17 measures will make it into law, how many were de-fanged in 11th hour rewrites. Schoch has drawn up a handy scorecard.
"A lot of it had to do with cost," Speaker Atkins says about what killed or altered reform bills in the waning days of the legislative session. She offers up AB 1454 by Assemblymember Ian Calderon (D-Whittier) as an example. It would have mandated annual, unannounced inspections of all licensed community care facilities, including assisted living homes. This would require more staff at the Department of Social Services, and thus, more money in the agency's budget. The Brown Administration did approve a bigger budget for DSS this year, but it's not a given it would be enough to guarantee annual visits. Atkins holds out hope for future budget boosts, though. "California's making a turnaround as it relates to health and human service issues, but it's taking awhile," she said.
Murphy worries about how those bills that do make it into law will be interpreted by regulators. "If it’s not clearly stipulated within the bill, then it’s left to the regulators, and then the regulators are going to come up with whatever they come up with." She wants to see the California Department of Social Services set up stakeholders meetings across the state, to ask what families and activists want to see happen next.