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“Unity is strength…
when there is teamwork and collaboration,
wonderful things can be achieved.”
~Mattie Stepanek
** Note: You can also read Dr. Mara’s blog on Medium.
In 2023, I wrote about my journey as a family member to start a Family Council at the nursing home where my mom was residing. Having worked as a psychologist in long-term care facilities, such as nursing homes and assisted living communities, I had come across several such councils of families that I saw providing much-needed peer support among family members, as well as working together as one voice to advocate for changes with the facility administrations that benefitted all residents of those communities. And, as I was now finding myself in that position of family member, I really longed for such alliance with other families who were going through similar situations.
The Benefits of a Family Council
A Family Council is a network of family members and close friends who advocate for their loved one residing in a long-term care facility that provides peer support, as well as important information.
- The Council provides opportunities to advocate for improving the quality of life, well-being, and happiness of all residents of the facility.
- Family Councils are a venue for family members/loved ones to share and discuss concerns without reservation, learn about supportive services for concerns, and to problem-solve.
- Family Councils may be able to influence nursing home decisions and take action on shared concerns.
The 1987 Nursing Home Reform Act guarantees that all long-term care facilities, most specifically nursing homes, that are certified by Medicare and Medicaid, the right to form and hold regular and private meetings of an organized group called, a “Family Council,” which includes as members any family members of nursing home residents and close friends who are involved in the care of residents. In abiding by that law, the facility must provide a meeting space or a virtual platform, although some Councils choose to use their own Zoom account or the account provided by the Statewide Ombudsman Program of their state.
Family Councils are member-run and, although the facility must appoint a facility liaison or staff advisor, staff and administrators only have access to the meetings when they are invited, usually to discuss a specific issue or issues. The facility liaison/staff advisor is responsible, according to the law, for responding to written requests that result from group meetings and the facility administration must listen to the views and to reasonably act upon the grievances and recommendations of residents and families concerning policy and operational decisions affecting the resident care and life in the facility.
Given that many of the in-person groups had been discontinued during Covid, I discovered in my effort to start a new Family Council, that such Councils had started meeting virtually, via Zoom. After the Family Council was up and running, I discovered the many benefits of virtual meetings, even without a pandemic. I lived two thousand miles from my mom, visiting every two to three months. Having the benefit of Zoom meetings meant that I didn’t have to worry about scheduling my visits around the meeting times – and I discovered that, in fact, many of the family members lived in other states from their loved ones, as well. In addition, after a long day of work or of visiting loved ones at the nursing homes, family members were able to hop onto Zoom without having to go back to meet at the nursing home for the meeting. This also prevented cancellations due to inclement weather.
Many Family Councils have gone back to in-person meetings and there are benefits to that, as well, as they provide an opportunity to get to know other family members on a one-to-one basis. My preference would be for continued virtual meetings, with opportunities to also have parties or get-togethers in person. But, of course, the decision about a virtual vs. an in-person meeting is up to the family members involved and the needs of that group. In either case, here are some tips for starting a Family Council, if one doesn’t already exist in your loved one’s community, including specific tips related to virtual meetings.
Getting a Started
- Start With Your Core Group:
- Connect with other family members and close friends of residents at the community to share the idea of forming a family council, to gauge interest, and to drum up interest by discussing your goals (such as supporting each other and making changes in the quality of life for your loved ones and all residents).
- Identify those who are interested in participating.
- Identify those who will help in getting the Council off the ground.
Although I lived far from my mom’s community, I got to know other family members on my visits to my mom. Those were the family members whom I reached out to first. And I knew that, as long as they showed up, we had a Council. Fortunately, our Council grew from there.
- Assure privacy. Many family members are fearful of retribution, if they participate in a Family Council. However, all participation is confidential (and this must be emphasized with all members, that they not share information from the meetings with others, including the names of participants). In addition, no staff member or administrator may attend a meeting with an invitation for a specific meeting. Members of the Council are informed ahead of time if there will be a facility representative at a particular meeting and they can choose not to attend, if they are uncomfortable with the administration knowing they are in the Council.
- Ask the Nursing Home Administration for Help:
- Communicate with the nursing home administration about your interest in starting a family council.
- Ensure you adhere to HIPPA privacy regulations and work together to send out invitations. The administration can distribute information to all families, including virtual meeting links, while you can provide the exact writing for invitations to be sent. (See a sample invitation letter below.)
As I mentioned above, the Federal law states that nursing homes who receive Medicaid and/or Medicare payments are required to provide a certain amount of help with the Family Council, even if they aren’t excited to have such a Council at their facility. Because of medical privacy laws, you won’t have access to the contact information of all residents’ families, so you’ll need the help of the nursing home administration to send out the invitations for you. As I mentioned, the law requires that they do this. However, it’s best to let the administration know that your Council is there to help provide quality care for all residents and not to be an adversary. Set up the expectation that you’re on the same team, even if it sometimes feels that there’s some tension. When I sent out that first e-mail to the administrators at my mom’s nursing home, I also let them know, in a friendly manner, that I was working with the State Ombudsman Program to help with creating the Family Council. This gave a little more power behind my request, without hitting them over the heads, so to speak.
- Use Available Resources:
- I really did have help from the Ombudsman Program, as well as the Statewide Family Council for guidance. Another great resource for tips and best practices is the National Consumer Voice for Quality Long-Term.
- A benefit of joining a Statewide Family Council is that you’ll meet family members who participate in Family Councils that are already up and running at other facilities and they can be a great resource for information and guidance. You can find out about the Statewide Family Council through your state’s Ombudsman Program website.
- Schedule the First Meeting:
- Choose a convenient date and time that accommodates as many members as possible.
- Plan for a virtual format using platforms like Zoom, taking steps to ensure ease of accessibility for all attendees. Check out my recent blog about assuring accessibility, Family Council Do’s and Don’ts: Avoiding the Hidden Obstacles of Accessibility That Might Exclude Some Family Members and Might Unconsciously Promote Ageism and Ableism
- Create an Agenda and Set Goals:
- Draft a simple agenda that includes introductions, the purpose of the Family Council, and a discussion of some initial goals.
- Ask members to share their expectations and concerns in order to tailor future meetings.
- Facilitate a Supportive Environment:
- Set ground rules for respectful communication and confidentiality.
- Encourage participation by allowing all members to voice concerns and suggestions.
- Follow-Up to Keep Engagement High:
- Send out meeting minutes in order to keep everyone informed, including those members who were not in attendance at the meetings.
- Plan for regular meetings and reminders to maintain momentum and member engagement.
- Include all members in drafting any e-mails sent to the administration regarding requests or concerns.
- Strive for a Collaborate Relationship with the Administration:
This is often a difficult balance. One of the main jobs of the Family Council is to make requests for changes in the facility. Often these requests or complaints made by the Family Council aren’t received happily by the administration of the facility. And Family Councils can influence on facility decisions for changes. But, it’s can be much more powerful when taking solution-focused approach, emphasizing collaboration with the administration and staff for the best interests of the residents, rather than taking an adversarial stance. It’s best to repeatedly emphasize this collaboration, especially at times when tension arises.
Sample Invitation Letter for the First Meeting
Here’s a sample invitation to ask the administrators of your facility to send out to all family members of residents in order to kick off the first meeting:
Dear Family Members and Friends,
[Introduce yourself, ie., My name is____ and my mom lives here at ___]. Some of us have gotten together to organize a Virtual Family Council. You are invited to join our first Virtual Family Council meeting, which is open to families and close friends of residents at [Nursing Home Name]. This is a wonderful opportunity to connect, share ideas, and support one another in advocating for the very best care and quality of life for our loved ones.
Meeting Details:
Date:
Time:
Location: Online via [Zoom/Platform link here]
Our Family Council is inspired by the philosophy of creating a safe, supportive, and inclusive space where every voice is valued and privacy is respected. Only family members and close friends attend—nursing home staff or administrators join only if invited for a specific topic, ensuring open, candid, and confidential discussion for all.
Family Councils give the opportunity to improve the quality of life, well-being, and happiness of all residents. They create a safe space to share concerns, problem-solve together, and learn about available support—all while giving families a unified voice to advocate effectively for their loved ones.
How to Join:
Just click the link above at the meeting time—no complex registration required. If you need assistance accessing the meeting or have technology questions, let us know and we’re happy to help!
RSVP:
If you haven’t replied yet, please let us know if you plan to attend.
Also, feel free to reply with any topics or concerns you’d like added to the agenda.
We hope to see you there—every perspective makes a difference!
Warm regards,
[Your Name]
[Your Contact Information]
[Optional: Your Role, e.g., Family Council Organizer]
There are many things about the lives of loved ones residing in long-term care that we can’t control, such as the reason they had to move into a nursing home in the first place, the health issues that they might have to deal with along the way, the ageist treatment they might encounter within long-term care, and the many challenges of the healthcare system, in general. Advocating for the best care of your loved ones with the support of a Family Council can aid with your empowerment in an often extremely challenging situation.
Wishing you luck and strength along your journey of advocacy for your loved one!
You can read similar blogs by Dr. Mara at her website, where you can also listen to her internet radio show, now also on Apple Podcasts. Check out Dr. Mara’s internationally best-selling book, The Passionate Life: Creating Vitality & Joy at Any Age, now available on Audible in addition to digital and paperback. And be sure to follow her on Facebook for all the latest news!
