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Note: You can also read Dr. Mara’s blog on Medium.
“Inclusion is intentional.
It is about identifying and removing barriers
so that everyone can participate to the best of their ability.”
~ theinclusiveclass.com
The Benefits of Having a Family Council
A Family Council in a long-term care facility can be a very powerful tool for family members to help increase the quality of life for their loved ones residing in the community, thereby helping to also decrease the stress felt by family members. As I wrote in my blog, Advocating in the Nursing Home Starting a Family Council — Part I, a Family Council is intended to be a supportive network of family members and loved ones of residents to provide sensitive and caring support, as well as important information, for all involved.
Family Councils can provide opportunities to improve the quality of life, well-being, and happiness of all residents. They are a venue for family members/loved ones to share and discuss concerns without reservation, learn about supportive services for concerns, and problem-solve. In addition, Family Councils may be able to influence nursing home decisions about shared concerns.
Therefore, I highly suggest, if your loved one is in a long-term care community, that you join an existing Family Council or, if one does not exist, start one. I started a monthly virtual Family Council, meeting through Zoom, for interested loved ones at the nursing home where my mom was living. I found the information about how to start a family council, as well as some best practices for its success and to overcome obstacles through the Statewide Family Council of Connecticut, since my mom resided in Connecticut, the National Consumer Voice for Quality Long-Term Care, and the Moving Forward Nursing Home Quality Coalition. I also received quite a bit of help getting it off the ground from other family members I had gotten to know on my visits to my mom. After it was formed, our Family Council had a significantly positive impact on the community, which I feel very good about.
So, after having organized a Family Council and hearing about experiences others have had in their Family Councils, I thought it would be a good idea to discuss some things I’ve learned, the do’s and don’ts, if you will.
Accessibility to Family Members of All Ages and Abilities
Keep in mind that the most powerful Family Council starts with being welcoming and accessible to all family members, no matter their age or abilities. All members should feel comfortable sharing their ideas and thoughts. The Council, itself, should not add to their stress further, but, rather, help with problem-solving and support.
Virtual Family Councils have the advantage that members can be anywhere, as not all family lives nearby. I lived in Austin, TX, and with my mom living in Connecticut, in-person meetings weren’t possible. With virtual meetings, members don’t have to worry about weather and transportation. They can hop right on the Zoom call at the time of the meeting, perhaps, after a day of work, or visiting their loved one in the nursing home, or whatever else their life entails. These days, most people are busy with the task of living.
Being virtual also comes with some precautions to keep in mind.
One of the rules of Family Councils is that they are completely run by loved ones of the residents, and there are no employees or administrators in attendance, unless specifically invited to attend a meeting to discuss a chosen topic. In addition, the names of those in attendance, or the residents they represent, are never shared with employees or administrators of the community. Due to privacy laws, the Family Council would not have access to the contact information of family members of residents until those family volunteers that information to the Family Council leaders. Therefore, it is the administrator who would send out the invitations to all residents’ family members, letting them know the when the meeting is occurring and, if it’s a virtual meeting, how to access the Zoom link. The downside is that a virtual Family Council could run the risk that an employee of the facility, a board member, or an administrator of the facility, might try to show up without permission to check on what’s being discussed in the meeting and who is attending. For that reason, some councils use a registration process so that the Zoom “administrator” (usually the family member running the meeting) can make sure that everyone who is attending is someone who belongs at that meeting, meaning a non-employee, non-board-member, non-facility administrator, loved one of a resident. However, the registration process can be cumbersome for some members of the group who are not technology savvy, causing them to be unable to get into the meeting. Another option is to require a password to enter the call. This is a bit easier, but when I used passwords, I often received texts at the start of the meeting that members were also locked out.
The easiest and most accessible way for members is to use the Zoom waiting room. In this situation, when someone logs into the Zoom meeting, they are put into a waiting room. A bell will ring for the Zoom administrator, who can see who has registered their name and then let them in. It can be a little bit cumbersome for the Zoom administrator, but it is much easier and more accessible for the attendees. Keep in mind that the loved ones of the nursing home residents vary in age, and some might be the same age as (or older than) their loved one who resides in the nursing home. If the technology is too complicated, it can be very intimidating and exclude those members.
Helping All Members to Voice Ideas Easily
In addition, it’s important for all attendees to have the opportunity to participate in the discussion and to bring up issues at the meetings. Having members send e-mails with topics they’d like to discuss ahead of time can be very helpful in setting the agenda. However, making it a requirement that all topics are submitted prior to the meeting is a level of rigidity that might also exclude some members from participating. Not everyone has easy access to e-mail, and people who are extremely busy with work, caregiving, child-care, and life, in general, might find this extra task to be one too many, causing them to choose not to participate in the Family Council.
Attending the Meeting Should Not Be Like Work
Another issue I’ve seen in some groups is that attendees are required to keep their cameras on throughout the meeting, lest they be kicked off of the Zoom. I agree that it’s a good idea for everyone to be asked to check in with their face on the screen for a few minutes to be sure that they are who they say they are. But, again, for some attendees, having a camera on would make it difficult for them to grab a bite to eat at the start of the meeting or change into more comfortable clothes after a busy day of living their lives. Again, this might cause a loss of those participants in the Council. Having this as a requirement also adds to the feeling of being in a meeting at work in a corporate setting. It can be very intimidating for those who might not have worked in many years, if at all, or who might be looking to have this as supportive environment and not another work meeting.
Flexibility is Key
For all of these issues, flexibility is the key, as it is for getting through life, in general (see my blog, Finding Grace in Flexibility: Showing Up When Things Fall Apart). And let’s remember that the goal of creating, running, or participating in a Family Council, is another tool to help navigate an ageist and ableist long-term care system. In doing so, we want to be sure that our own behaviors do not exclude family members by making the ability to participate based on very rigid rules. If Family Councils are an avenue for combatting ageism and ableism, we must try to be aware, flexible, and compassionate, so that we don’t unconsciously become promoters of the biases we’re striving to eliminate.
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!
