Where family and resident councils are most common in US nursing homes

The COVID-19 pandemic was a turning point for nursing home care in America. It amplified the dire needs of the nation's vulnerable older adults and spurred families to effect change.

Four years later, nursing homes are struggling. They're hurting for funding, under-regulated amid labor shortages, and facing lawsuits from residents' family members alleging lapses in care are causing early deaths.

Even after engaging with facility administrators over safety and accessibility concerns during the pandemic, families whose loved ones reside in nursing homes are struggling, too. They have a right to engage with and provide ongoing feedback to nursing home administrators about quality of life and care.

That's where family councils come in. They've been around for decades, and consumer advocates and health professionals say that family councils can improve residents' quality of life—though the federally protected right to form these groups is rarely seized upon today, according to Centers for Medicare and Medicaid Services data.

Caring.com analyzed CMS data on the more than 14,000 nursing home facilities in the U.S. to illustrate where family councils and their resident-led counterparts are most common and how families can embrace their right to be involved in their loved one's care.

Since 1987, when former President Ronald Reagan signed the Federal Nursing Home Reform Act into law, Americans who live in public and privately owned nursing home facilities receiving CMS funding have had a right to form and participate in resident councils, and their family members have a right to participate in the form of a council, too.

The councils provide oversight in a variety of ways. They build connections through social event planning and foster community among residents, their families, and the staff. They may also function as a watchdog: By raising group concerns about living conditions and care at their facility, councils provide cover for individuals who may fear retaliation.

"We've seen over the last few years some real deterioration in quality in nursing homes," National Consumer Voice for Quality Long-Term Care executive director Lori Smetanka said. "Resident and family councils are a really good way for those that are living there and their loved ones to come together and really try to promote quality, and hold the facility accountable for the quality that they are providing."

Facilities are required to respond to issues raised by both resident and family councils, Smetanka explained, adding that the response includes investigating and informing parties of any action taken.

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Where nursing homes are most likely to have resident and family councils

While resident councils are common, family councils in nursing homes are few and far between, despite their benefits.

Resident councils are present in the majority of facilities in all states, according to CMS data from August. However, family councils are rare on their own, and it's much less likely that nursing homes have both a resident council and a family council.

The National Consumer Voice for Quality Long-Term Care advocates that in an ideal world every single home would have both a resident and family council. In only Washington D.C. and a few states, including New York, Connecticut, and Minnesota, do more than 1 in 4 nursing homes report having both councils. Minnesota leads the nation with half of its facilities reporting the existence of both a family and resident council.

Minnesota long-term care ombudsman Cheryl Hennen attributed the state's success in encouraging resident and family councils to a unique state law requiring nursing homes to fund council education and empowerment to the tune of $5 per active bed.

"I'm really proud of what we have here," Hennen said. "Our office is involved and coming in with a helping hand saying, 'Here, we're not going to do the work for you but it is in law that residents have a right to organize in a council' and we work at assisting them."

Experts say family councils and resident councils serve two equally important functions, including removing barriers to involvement in family care for loved ones in nursing homes. While residents councils can be an important collective voice in their own right, some studies have suggested that family councils can help reduce confrontation between staff and residents' family members, as well as lead to fewer complaints about care.

Forming and managing effective councils

The existence of councils is reported to the CMS by the facilities and not the residents. The data doesn't reveal how vibrant or independent existing resident and family councils are, nor whether they meet regularly and hold elections as is recommended.

Family members who would like to learn more about family and resident councils should contact the facility where their loved one lives. They can also inquire with the nursing home administrators and staff about existing councils, and how active and independent from nursing home administration they are, according to Smetanka.

After figuring out what already exists at a facility, residents or their families may decide they want to start a council where there isn't one. National Consumer Voice for Quality Long-Term Care recommends family members connect with other families while visiting loved ones, at events, or by asking facility staff to connect them with other families to gauge interest in a family council.

The advocacy group maintains a number of resources for those involved in either kind of council. Facilities have a responsibility to provide information to residents and their families if a council is forming or a meeting related to their formation is taking place, and can be a tool for reaching other residents' families.

Every state also has an ombudsman's office that exists to encourage the creation of councils, in addition to educating and working with families and residents to understand their rights in the nursing home system. Many state offices, like in Texas, offer resources like templates for holding meetings and elections for resident councils.

"We must not forget our aging population," Hennen said, "especially those in need of long term care services and support, and [ensure] they do not lose their voice or their rights when they enter that world."

Story editing by Alizah Salario. Additional editing by Kelly Glass. Copy editing by Kristen Wegrzyn.

This story originally appeared on Caring.com and was produced and distributed in partnership with Stacker Studio.