This story originally appeared in the California Health Report.
Julie Hendrickson was nervous about her 87-year-old father’s move to a San Diego County assisted living facility and wanted to make sure they both understood the rules and conditions before signing the contract. The person who admitted her father was walking them through the document line by line, when two words caught Hendrickson’s attention: family council.
“I’d never heard of it before,” Hendrickson said. “I was looking for a way that I might transition to give him some space and independence but still advocate, you know, still be supportive.”
But the worker offered no information, directing Hendrickson to the executive director. While waiting for that person to respond, Hendrickson turned to Google.
It told her that under California law, residential care and skilled nursing facilities must inform new residents and their families of the existence of a family council. And if a council doesn’t exist, relatives must be told of their right to form one.
But to her dismay, Hendrickson found that the facility her father was moving into in 2024 didn’t have a family council and that it would be up to her to form one.
Julie Hendrickson and her father, Wilbur “Woody” Woodside. (Photo courtesy Julie Hendrickson)Hendrickson is among many who learn about family councils only because they ask. Family councils are independent groups of residents’ relatives or friends that meet to discuss issues to raise with staff members, who are not allowed at the meetings unless invited. California strengthened these rights in 2023, giving family councils some of the strongest protections in the country. Among other things, the law now requires facilities to respond to a council’s written requests within 14 calendar days.
Facilities with active councils often see higher quality care because families are more engaged, said Tony Chicotel, a senior attorney with California Advocates for Nursing Home Reform. But creating one can take persistence.
“Family councils are like a precious desert flower,” Chicotel said. “They can do beautiful things, but they need lots of tender and loving care to thrive.”
Consequently, family councils remain rare, often forming only after care issues arise, he said.
In nursing homes, short stays make it harder for relatives to invest in organizing. In assisted-living facilities, families may fear backlash or simply lack information, Chicotel said. Although facilities are required to disclose the right to form a council, Chicotel said those notices often get buried in voluminous admission packets.
Getting started
Patti Marin and her sister, Ruby Marin, formed a family council last year, because they were not satisfied with the way their mother’s assisted living facility in Long Beach responded to their concerns about her medication schedule.
When their complaints went nowhere, Patti Marin drove to Los Angeles County’s Social Services Community Care Licensing Division to ask how the system was supposed to work. A supervisor pointed her to Title 22, California’s regulatory framework for long-term-care facilities, where Marin said she learned for the first time about family councils.
Marin said that soon after forming the council, she casually invited others to join. “I remember saying, ‘Hey, we have a family council, if you have any concerns, please come,’” she recalled.
Now a year old, the council has 10 active members and has raised dozens of concerns with the facility’s administrators. Some complaints have resulted in changes, including a shift away from high-carbohydrate meals and the hiring of a new chef to design more balanced, nutritious menus.
Help from the state
Woodside after his move to a San Diego County assisted living facility. (Photo courtesy Julie Hendrickson)In San Diego, Hendrickson’s research led her to a county ombudsman. They act as advocates, making sure facilities comply with state rules.
The California Long-Term Care Ombudsman Program has representatives in counties who support residents in care facilities and their families, including in forming family councils. Fay Gordon, the state’s long-term care ombudsman, said her office supports about 200 family councils. She encourages relatives to ask early about whether a council exists and to contact their county’s ombudsman office if it does not.
“Once they get past that initial process, it can be hard to reengage, and I think that’s a really critical moment for that caregiver to feel supported,” Gordon said.
After talking with her local ombudsman, Hendrickson began her own outreach, designing flyers and postcards and posting them on bulletin boards near the front desk as families gathered at the San Diego facility for Fourth of July festivities.
A month later, she had connected with one other family member and convened the first meeting. Now the council has about a dozen participants, and monthly meetings typically run about an hour.
With support from the ombudsman, the group works through issues, brainstorming strategies for supporting residents, engaging staff and management, and elevating complaints to the state’s licensing division when needed.
Neither the San Diego nor the Long Beach facility responded to multiple requests for comment about the difficulties Hendrickson and Marin had in getting information about family councils.
Both women said stronger state and county oversight is needed to ensure facilities address complaints raised by families. Those families, they noted, are overwhelmed, intimidated and unsure how to navigate the care system. They shouldn’t then be tasked with figuring out how to form a council that is supposed to support, rather than stress, them.
Hendrickson is no longer involved with the family council, because eventually her father decided to move. But she recommends the experience to family members who are trying to ensure their loved ones get the best possible care. Connections formed through the council, she said, offer something invaluable: a community.
“The positive is you get to meet people,” Hendrickson said. “You just get to meet people who are doing the same thing with their life energy that you’re doing.”
Daniella Jiménez is a writer with the Investigative Reporting Program at UC Berkeley. She reported this story through a grant from The SCAN Foundation.
The California Health Report reports on communities across the state about health equity issues.
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