What is a family or resident nursing home council and how common are they in Utah?

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.

Based on a national analysis, Caring.com analyzed CMS data on the more than 14,000 nursing home facilities in the U.S. to illustrate how common family councils and their resident-led counterparts are in Utah 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 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.

Councils are 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.

Utah nursing home councils at a glance
- 10% of facilities have both resident and family councils.
--- 77% have just residents councils.
--- 0% have just family councils.
- There are 98 nursing homes in the state.

Top 10 states where nursing homes have both resident and family councils
10. Maryland: 21% of facilities.
9. Florida: 23% of facilities.
8. Vermont: 24% of facilities.
7. Mississippi: 24% of facilities.
6. Hawaii: 24% of facilities.
5. Alabama: 24% of facilities.
4. New York: 26% of facilities.
3. Connecticut: 32% of facilities.
2. Washington D.C.: 35% of facilities.
1. Minnesota: 50% of facilities.

This story features data reporting and writing by Dom DiFurio and is part of a series utilizing data automation across 50 states and Washington D.C.