Unique Guide to Long-Term Care Services in Danger of Folding

June 2017Andrew Schwartz

Few families are fully prepared when a loved one is in need of long-term care (LTC) services. Whether an older adult needs home health, assisted living, a nursing home, adult day care or hospice, far too many families make rushed, underinformed choices that leave them worried about the quality or affordability of the service they’ve chosen. Too often, that worry is justified.

Yet for the past 15 years, Californians have had something of an advantage in these searches. is a kind of free Consumer Reports for LTC services – user-friendly, comprehensive and objective – but unless its staff can secure a new funding source before the end of 2017, the service will fold.

A Track Record of Service for Californians

Charlene Harrington Charlene Harrington – a professor emerita at UC San Francisco School of Nursing – was the driving force behind the website. An internationally recognized expert on public policies regarding long-term care for the elderly and disabled, Harrington originally envisioned a resource for families and older adults looking for a nursing home. In 2002, with support from the California Health Care Foundation (CHCF), Harrington made that happen.

The CHCF hosted and supported the site for the next 14 years as it expanded into describing and rating other LTC services that families need. Then, in September 2016, the CHCF decided to discontinue its funding in pursuit of advancing new approaches to improve health care delivery for Californians; the move was not entirely unexpected. “It is highly unusual for a nonprofit to provide that type of support for so long,” says Harrington.

She and Leslie Ross – the site’s current director – raised enough money to move the site to UCSF and keep it alive through the end of 2017. Now, however, they are scrambling to convince the state of California or a private funder to help them maintain the site at the cost of approximately $400,000-$500,000 per year, which would cover 2.5 full-time workers and associated costs for maintaining the site.

A Rigorous Methodology, a Far-Reaching, User-Friendly Service

Though it does virtually no marketing, serves approximately 400,000 users per year, including individuals, families, hospital discharge planners, nursing homes, social workers, case managers, consumer organizations like AARP and reporters. Site staff gathers and carefully aggregates data from the Centers for Medicare and Medicaid Services (CMS), applicable state agencies and self-reported quality measures and staffing figures. The site staff then applies an academically validated methodology to rate each LTC service.

The ratings methodology is similar to the way CMS rates nursing homes, but the incorporation of the state data can make an enormous difference. “We also give greater weight to survey and state staffing data because many quality measures are self-reported and not audited,” says Ross, who is also a researcher at the School’s Department of Social and Behavioral Sciences.

Leslie Ross A panel of experts periodically reviews the methodology because, says Ross, “No ratings are perfect, and they are very dependent on the quality of the information you have.” She and Harrington have consistently lobbied to improve the quality and timeliness of available information.

The site’s user-friendly interface allows visitors to select the type of service they’re seeking, enter a zip code or city and access a list of providers rated at five levels, ranging from Superior to Poor. With just a couple of additional clicks, they can find out more detailed information regarding the various services. The site also includes a Learning Center, which offers simple tutorials on how to use the site and how to go about choosing LTC services.

In addition to the site’s current users, Harrington and Ross would like to get the ratings in the hands of more individuals and organizations, including hospital discharge planners, so they can better help families scrambling to identify necessary services at the end of a hospitalization. Ross points to a recent study on hospital discharge planning, published in Health Services Research, where families had access to comparative information on nursing homes. The study found that “Personalizing report cards and reengineering the discharge process may improve quality and may lower costs compared to the usual discharge process.” Patients in the study had shorter hospital stays, were more likely to select nursing homes with higher quality ratings even though the nursing homes were further from their own homes, and were highly satisfied with the process.

The Go-To Place to Understand Quality

Part of the challenge Ross and Harrington face in raising funds comes from the fact that government agencies and private companies also offer some version of the information. But, says Harrington, “We think ours is the only site of its kind in the country – a unified single portal for all long-term care services that is free, unbiased, transparent and comprehensive.”

In contrast, the private companies, says Ross, are not always fully transparent about their methodology. Some receive payments from service providers that affect which providers come to the top of a search. Others have a business model that requires users to give up personal information, so the private company can sell the users more services.

As for government sites, their data are not always user-friendly. In California, agencies typically house their information in disparate Excel spreadsheet files. “For people to aggregate and analyze this data on their own, particularly family members at a time of stress, is extremely challenging,” says Ross.

“Our social workers and case managers need this information for our patients, but they are not experts in cleaning data off the internet, so something like [] is extremely helpful for us; it’s the go-to place to understand quality,” says Marty Lynch, the executive director and CEO of LifeLong Medical Care, a group of Bay Area community health centers that provide many services, including geriatric care. “It’s a really good tool, a really useful resource that we have to find a way to keep going and available for all of us.”

“This should be a public website, run by the state, but at least until now, they have not shown an interest,” says Harrington. That’s why she’s putting more hope into a private donor recognizing the need and putting his or her name on the site at UCSF, where trained faculty members can maintain it.

The Need Will Only Grow

According to the United States Department of Health and Human Services’ Administration on Aging, in 2014, 46.2 million Americans were 65 years old or older. By 2060, that number will more than double, with the likelihood of increasing numbers living well into their 80s and 90s and beyond.

Ross says that when she was trying to find hospice for her mother in New Jersey a few years back, “All I could do was Google, and you can’t make a decision from Google. People need trusted information, and we believe this is a great model that could be used nationwide.”

“In California, we’ve already invested several million dollars into creating this system,” says Harrington. “If we let it go, it’s one of those things you can’t easily resurrect.”