Advocating in the Nursing Home
Starting a Family Council — Part I
I’ve taken a break from my series about self-care in order to do a little bit of self-care while advocating for my 94-year-old mom, who is a nursing home resident. I’ve been learning a lot on this journey from this side, from a professional who has worked with elderly clients and their family caregivers, to becoming a family caregiver, myself. As I synthesize the lessons, I hope to appeal to those who are professionals working with the elderly population to think about some of the issues I present in these blogs and to think outside the box for solutions to problems that affect the wellbeing of residents and their families. In addition, I aim to help families to navigate this twisted, maze-like, path with whatever tips I can give.
When working in an institutional setting, the ability for creativity in problem-solving can often be mitigated by the institutional system. The result is that the residents are forced to fit into a mold that’s easier for the institution, while sacrificing their own individuality that they have spent a lifetime developing. And, we need to ask ourselves if we would want that type of life for ourselves, if we are lucky enough to live that long.
Join the Family Council — Or Start One
Right now, I’m working to start a virtual family council at my mom’s community. Having worked in nursing homes as a psychologist, I’ve seen the value of family councils. I have been advocating for my mom regarding the many issues that arise for her and that are often shared by other residents in her community, every week and sometimes multiple times in a week or even a day. A family council can be a way to work with other families toward a common goal of improving our loved ones’ quality of life through a unified voice.
The Virtues of Going Virtual for a Family Council
Given the ongoing issues of Covid and other infectious diseases, as well as the reality that many family members live far from their loved ones and/or have other work and family responsibilities, virtual platforms have turned out to be a great option for holding such Family Council meetings. For example, I live in Texas, while my mom is in a long-term care facility in Connecticut. Since the start of Covid, many family councils in existence went virtual, meeting from the safety of home on Zoom, while others, like the one that was functioning my mom’s community, discontinued completely. So, I have taken on the mission to re-start the Family Council and to go virtual with it. Our first meeting is coming up very soon.
Reasons to Start a Family Council in Your Loved One’s Community
I’m quite grateful to the Statewide Family Council of Connecticut, the National Consumer Voice for Quality Long-Term Care, and the Moving Forward Nursing Home Quality Coalition for providing information about reasons to start a family council, how to start a family council, and some best practices for its success and to overcome obstacles.
Here are some of the why’s:
· A Family Council is intended to be a supportive network of family members and loved ones of residents in the facility to provide sensitive and caring support, as well as important information, for the family members/loved ones as well as the residents.
· The council provides opportunities to improve the quality of life, well-being, and happiness of all residents.
· 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.
· A Family Council may build trusting relationships between family/loved ones and nursing home staff.
The Rights of Family Councils in Nursing Homes
There is a Federal law, called the 1987 Nursing Home Reform Act, which guarantees that family members of long-term care (nursing home) residents have several important rights meant to enhance their loved one’s quality of life in the nursing home and to improve service and conditions throughout the facility. One of the essential rights that this law guarantees is the right to form and hold regular and private meetings of an organized group called, a “family council.”
Facilities that are certified by Medicare and Medicaid must abide by this law and, in doing so, must provide a meeting space (or virtual platform), cooperate with the activities of the family council, and respond to the concerns brought up by the council. These council meetings 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 reasonsbly act upon the grievances and recommendations of residents and families concerning policy and operational decisions affecting the resident care and life in the facility. Finally, while the law references “families” of residents, the close friends of residents are also encouraged to be part of the family councils.
As my own journey continues in the formation of a Family Council, I’ll share my knowledge and tips on how to create a positive solution-focused environment within the council, so that the families can work in concert with the nursing home, rather than as adversaries.
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