Lorchid Macri, 70, says she couldn't find any information online when she had to find an assisted living facility for her mother in California. (April Dembosky/KQED)
Lorchid Macri, 70, says she couldn’t find any information online when she had to find an assisted living facility for her mother in California. (April Dembosky/KQED)

Lorchid Macri wasn’t sleeping. Her elderly mother was wandering out of the house in the middle of the night, forgetting to turn the stove off. Macri had to keep watch over her 24/7.

“Dementia is a cruel disease,” Macri says.

She says the stress of caring for her mother was overwhelming. It wasn’t until she landed in the hospital herself — losing the sight in her right eye for 10 days — that she was ready to confront the fact that it was time to place her mother in assisted living.

“It’s gut wrenching to put someone that you love and who has cared for you in a facility with strangers,” she says.

Macri lives in central Oregon. But she wanted to find a home for her mother in Southern California where all of her friends and extended family live. Her search started where all consumer searches start these days: on the internet. She wanted to make sure the places she considered had no complaints lodged against them, no violations for neglect or abuse.

“There’s nothing,” she says. “You cannot find anything.”

Macri would have had to travel to a regional state office in Southern California and request paper copies of these reports. But from her home in Oregon, California’s website proved useless.

“I was dumbfounded at the fact that there were no methods to see if there were any reasons that I would not want to put my mom in any of these facilities,” she says.

She says the lack of meaningful information made an already difficult decision even more painful.

“You’re placing this individual that you love in a situation where you can only hope and pray that they’re going to be safe, secure, and well cared for.”

About a dozen states in the U.S. — including North Carolina, Florida and Ohio — make details about facility violations readily available online. California lawmakers say it’s an embarrassment that a state with the technical genius of Silicon Valley is so far behind.

At a press conference in January, Assemblymember Susan Eggman (D-Stockton) introduced a bill, AB 1571, that would require the state to build an online rating system where consumers can compare facilities on quality.

“We should not depend on Yelp when a loved one needs help,” she said.

The bill is one of several proposed assisted living reforms currently pending at the State Capital. Lawmakers will vote on it this month, but it’s unclear if they –- or the governor –- will sign off on the million-dollar price tag.

“I don’t see how we afford not to do this,” Eggman says, though she conceded that the political will to back technology projects is lacking. “There’s always more needs than there is money. And the state’s encountered budget problems for awhile now. So upgrading technology is not at the top of anyone’s list.”

Prior Attempt ‘Mind-blowingly Bad”

This isn’t the first time the state has tried to build a consumer website for assisted living facilities. Several years ago, the Department of Social Services (DSS) received a grant to help collect information from facilities that could be posted online.

“The result was mind-blowingly bad,” says Tony Chicotel, an attorney with California Advocates for Nursing Home Reform, an advocacy group that monitors the assisted living industry and is backing more than a dozen reform bills.

The site only listed names and addresses of facilities. There were no details on services, cost, or past problems.

“For consumers, it was completely useless,” Chicotel says.

Part of the problem was resistance from the assisted living industry. Most facilities refused to provide information for a website, partly because the technology deployed by the Department of Social Services to collect the information was so bad. But facilities also objected to publishing anything about their rates, says Benson Nadell, program director for the San Francisco Long-Term Care Ombudsman Program.

“They want interested parties to call up and have an appointment with their marketing person,”  he says, adding that some sweet-talking salesmen want to prey on peoples’ guilt around placing their parents in a facility. “It’s like buying a car, particularly the nice looking places. They are quite enticing. And suddenly, money is no object.”

Will Lawmakers Greenlight the Funding?

After more than eight years, the California’s Department of Social Services finally added a new feature to its website in June. It now lists the number of complaints and citations lodged against a facility, but doesn’t say for what.

“It lacks specificity,” Nadell says.

Nadell says a database is only as good as the information entered into it. And here California has another problem. Current law only requires inspections of assisted living facilities every five years — more frequently only if there’s a complaint. But there’s a constant backlog of complaints that haven’t been investigated. So a lot of helpful information isn’t even being gathered.

“Right now it’s pretty hopeless,” Nadell says.

The Department of Social Services says it’s trying. Chief deputy director Pat Leary says the agency wants to post more information online, but it’s hamstrung by outdated technology. The department uses Lotus Notes, a database program developed before the internet took off.

“We have an antiquated computer system that requires human beings to go in and collect data and create reports by hand,” Leary says.

A complete overhaul of the entire system is what’s really needed, advocates say, but the cost of that far exceeds what lawmakers are willing to spend.

So consumers like Lorchid Macri are basically on their own. She found a facility in San Bernardino that she thought would be okay for her mother. But it wasn’t.

“She lost 17 pounds in 6 months,” she says. “She was not showered daily as she was supposed to be. We often found her in room still in her nightgown at 2 or 3 in the afternoon.”

After two facilities in two years, Macri was fed up. She moved her mom back up to a place in Oregon.

“I did not want to see another facility in California, because I couldn’t research it,” she says.

Macri says she knows her mother is doing well now, because she’s stopped asking if she can come home.

Online Information About Assisted Living Facilities Hard to Come By 6 August,2014April Dembosky

  • Bill Pelter

    You are doing a wonderful community service by raising people’s
    awareness to the lack of regulation and oversight in assisted living. Last October one of the horrible examples of this occurred in Castro Valley, California where 14 sick and elderly patients were abandoned by the Assisted Living Care Home provider: http://www.sfgate.com/bayarea/article/Castro-Valley-care-home-patients-abandoned-4929583.php. I work at an adult day program, non-residential, where we have strict health, safety and staffing regulations we must follow and have regular visits by Community Care Licensing who enforce regulations. They are a department of California Department of Social Services. I and my
    colleagues were stunned by the revelations in Castro Valley we all assumed assisted living facilities were under the same regulations that skilled nursing facilities, group homes and us must follow.

    Later in 2013 Frontline presented an expose’ “Life and Death in Assisted Living which was also shocking: http://www.pbs.org/wgbh/pages/frontline/life-and-death-in-assisted-living/ although national in scope the lack of regulation in California and its horrible consequences featured prominently. If you haven’t already you may want to contact Patricia McGinnis executive director of California Advocates for
    Nursing Home Reform in California shown in the piece. She has worked tirelessly to get the much needed reforms to protect our most vulnerable seniors.

  • CARR

    Until the state can accomplish such a database, Consumer Advocates for RCFE Reform (CARR) has tried to address this gap for families. CARR is a San Diego-based 501(c)3 offering the compliance histories on assisted living facilities in San Diego County, Imperial Counties, and 7 other counties in California. We have over 30,000 public documents and continue to expand our database daily. Since 2009, our mission has been to improve resident care in assisted living facilities by educating consumers and increasing industry accountability. While our site does not yet include all California RCFEs, we host a wealth of resources to benefit seniors and their families and we are passionate about helping consumers locate the meaningful information they need to make an informed placement decision. (And we do it all on a shoestring budget!) If you are struggling to get more than marketing information, please use our facility search and/or let our non-profit help you navigate the system and get the facts. Learn more at http://www.rcfereform.org or contact Chris Murphy or Chrisy Selder at (619)795-2165.

  • ACG

    Shameful is the only word to describe the situation. With my mother battling breast cancer, we had to move my dementia-stricken father into assisted living. Trying to vet these places was nearly impossible. If you live in Silicon Valley and you want to find out about a facility’s history of inspections or violations, the only thing a search on the internet gets you is a PDF with a list of regional offices. The fact that the contact information consists of a phone and fax number speaks for itself — we’re in the Dark Ages. If we’re at ground zero for innovative technology, why won’t someone take on the task of coming up with a useful, consumer-friendly database? This is a need that will just keep getting bigger. I fear that the state isn’t interested in shining some daylight on its data because its records are woefully inadequate and in disarray.


April Dembosky

April Dembosky is the health reporter for The California Report and KQED News. She covers health policy and public health, and has reported extensively on the economics of health care, the roll-out of the Affordable Care Act in California, mental health and end-of-life issues.

Her work is regularly rebroadcast on NPR and has been recognized with awards from the Society for Professional Journalists (for sports reporting), and the Association of Health Care Journalists (for a story about pediatric hospice). Her hour-long radio documentary about home funerals won the Best New Artist award from the Third Coast International Audio Festival in 2009.

April occasionally moonlights on the arts beat, covering music and dance. Her story about the first symphony orchestra at Burning Man won the award for Best Use of Sound from the Public Radio News Directors Inc.

Before joining KQED in 2013, April covered technology and Silicon Valley for The Financial Times, and freelanced for Marketplace and The New York Times. She is a graduate of the University of California at Berkeley Graduate School of Journalism and Smith College.

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