Alliance of Family Councils of NY
 


How to Form and Run a Family Council in Your Facility

Charles Gourgey

A family council can be a powerful way to offer and receive support from others and to communicate your needs to the administration. But what if your nursing home does not have a family council? You may be able to organize one yourself.

A first useful step in preparation is to become aware of the provisions of the New York State Family Council Law. These include:

These are the nursing home’s responsibilities. However, the nursing home has no obligation to establish the council. That is the responsibility of the family members. Thus while you do not need to ask the staff’s permission to have a family council, you should also not expect them to provide it for you.

Steps You Can Take

Now for the actual steps. Before doing anything else, try to form a positive working alliance with someone on the staff who can help you and who might serve as the facility’s liaison. This may vary from one nursing home to another, but usually it will be either the Director of Social Services or the Director of Recreation. Of course you can form a council without their help, but it is much easier if you can get their support.

Now try to find fellow family members who will be interested in joining you. When you visit the home, introduce yourself to other family members you may meet. Tell them about the family council and what it can offer them, and ask if they are willing to participate. If the answer is yes, then take their contact information.

Normally you will have access only to the floor on which your loved one resides. What about families of residents on other floors? There are two possible ways to reach them:

  1. Contact the staff member who has agreed to be your liaison and ask that person to inform family members whom they meet about the formation of the new family council.

  2. Contact your long-term care ombudsman, who will have access to the entire facility, and ask that person to inform all family members they meet about the council. In New York City you can reach your ombudsman at (212)812-2901. For the rest of the state, call (855)582-6769.

Make a list of the names and contact numbers of all family members that you find. Determine how many are committed to joining the council, and fix a meeting time, preferably once a month, that is convenient. Once you feel you have enough members to make the project worthwhile, approach the staff liaison and say you would like a designated place within the facility to hold meetings. Also make sure the facility sends out a mailing announcing the meeting time. By law the facility is obligated to send out such notices every three months, but many nursing homes are willing to send them out each month for each monthly meeting, so you should ask for that.

Structuring the Meetings

No two family councils are alike. Each is run differently, according to member personalities and preferences. Many family councils elect officers and adopt bylaws. Having a President, Vice-President, and a Secretary to take minutes is a good idea to provide the council with some structure and make sure that the council is run by the family members and not by the administration. Bylaws specify the basic rules through which the council operates, such as the official name of the council, time and frequency of meetings, how officers are elected, and how meetings are to be conducted. These rules can be tailored to the council’s preference; there is no one set way of doing it. Googling “family council sample bylaws” or anything similar should bring up some samples you can use for guidance.

No single way of structuring a meeting will work for every family council. The “best” way depends both on the membership of the council and the culture of the nursing home. We consider here only four different possibilities:

Model 1: Family members only. The family members caucus among themselves, with no staff or administration present. They can share experiences and determine what issues need to be addressed, which they may present to the administration later.

Advantages: Family members are in complete control. They determine the entire content of the meeting and can talk freely about their individual circumstances in completely privacy if they so choose. They need not be concerned about HIPAA restrictions. (HIPAA is the federal law that tightly regulates the sharing of personal medical information by health care providers.)

Disadvantages: Because the members do not have direct contact with the administration, they must communicate their issues either exclusively in writing or by working individually with administration members. This greatly limits opportunities for interaction and negotiation.

Model 2: Family members plus staff liaison. Family members meet with the staff member designated to assist them. This person is very often (though not necessarily) the Director of Social Services. They organize their issues and present them to the liaison, who makes note of them, reports them to the appropriate departments within the facility, and updates the members at the subsequent meeting.

Advantages: Members have a direct connection with a representative of the facility, to whom they may express their concerns. They have an opportunity to form a strong working alliance with this person.

Disadvantages: Members lack the opportunity to meet privately and plan their presentation. They do not have direct contact with top levels of administration.

Model 3: Staff and administration members invited. In this model the meeting is divided into two parts. During the first hour, only the members meet in total privacy, using the time to prioritize issues and prepare a presentation to the facility. During the second hour, the administrator and department heads are invited to enter and the families make their presentation.

Advantages: Family members have time to deliberate and prepare. They also have direct contact with department heads and administrator(s). They are dealing with those who have the most authority.

Disadvantages: If the family members are not very focused in the way they present their issues and questions, they may receive only meaningless generalities in response. This model requires careful preparation and good leadership.

Model 4: General meeting plus steering committee. The family members meet among themselves only, and appoint a steering committee to meet at another time with members of the administration to present the issues. The steering committee is a small subgroup of dedicated members to whom certain tasks are delegated, such as planning meetings, setting agendas, and interfacing with facility representatives.

Advantages: Members have a chance both for free and uninhibited discussion and direct contact with administration through the steering committee. A meeting between administration and steering committee will have fewer distractions and can be more focused than a meeting with the administration and full family council.

Disadvantages: This model places tremendous responsibility on the steering committee, so if its members cannot form a constructive working alliance with administration, or if they lack the ability to triage their issues and focus their questions carefully, the purpose will be lost. This model has tremendous potential but may not be suitable for every family council; some may find that a plan more like Model 2 gives them the best advantage. Again, the most appropriate structure will depend both on the personalities of the family members and the culture of the facility.

Finally, when you do meet with staff or administration, realize that they will not be able to address concerns about individual residents. The HIPAA law constrains them from publicly discussing personal details of specific cases. You can, however, present issues that are systemic, which affect all residents in the facility. So for example, you cannot ask in a public meeting with staff or administration present, “My mother’s diaper is chafing her; what can you do about it?” You can, however, say something like, “The facility has changed the brand of diaper it is using to something cheaper and this is causing chafing and discomfort in many residents. Can we change back to the old diapers?” If you do have an individual concern that requires immediate attention, speak to the appropriate staff member after the meeting and make your own private arrangement.

Ground Rules

Whether or not the family council adopts formal bylaws, it is helpful to have a set of ground rules. These prevent meetings from going out of control and ensure a chance for a productive result.

The most important ground rule, which every council should have, is that only one person speaks at a time. The family council president, or whoever presides at the meeting, may be designated to recognize each person who has the floor. That person must be allowed to speak without interruption, and should try to be brief. If the person speaking begins to monopolize the conversation, the person presiding should not abruptly silence the speaker but should thank that person while gently reminding everyone that others too need to be heard from. The most important key to success is respect. Side conversations are especially disrespectful and members should refrain from having them; they can easily cause the meeting to fall apart.

Other ground rules may include always having an agenda and following it strictly, requiring all speakers to stick to the topic at hand, starting and ending on time.

One important ground rule to consider is the maintenance of confidentiality: everything said in the room stays in the room. This helps family members feel safe to share what is on their minds and in their hearts. It is a good idea to remind members of this and other ground rules at the start of every meeting.

A family council also has the option of inviting guest speakers on any topic of interest to caregivers. The speakers may be facility department heads, or outside authorities addressing topics such as resident rights, advance directives, caregiver resources, or anything that may offer support to those caring for loved ones in a nursing home. However it is important not to fill the meeting with speakers to the point of not leaving time for discussion of issues and planning.

The family council might also consider issuing a monthly newsletter and circulating it to all the families in the nursing home. The newsletter can summarize the previous meeting and mention the council’s accomplishments, so that family members will know that attending the meetings is worth their while.

It is important to maintain a positive, diplomatic tone, especially when dealing with staff and administration. Given the conditions in many nursing homes, family members may understandably experience much anger and frustration. It is important to know how to channel that, so it becomes a constructive force instead of something that could tear the council apart.

This brings us to the next important topic.

Pitfalls to Avoid

There are many things that can go wrong in a family council meeting, which only benefit the facility at the expense of the family members. Chief among these is the unrestrained expression of family anger. The worst, and perhaps most common, mistake that family councils make is to try to force change through anger. It doesn’t work, and more often than not it backfires.

Families may have much to be angry about, given that across the board nursing homes are understaffed and this inevitably impacts upon resident care. But turning a meeting into a “gripe session” plays into the hands of the administration. It is very easy to handle unrestrained griping, as any well-trained customer service representative knows: just agree with the complaint, say you will “look into it,” then forget about it. This happens all the time.

But not only is unrestrained anger ineffective, it is also destructive. To achieve real results for the residents, family members must establish good will with administration and staff, or if that is not possible then at the very least a relationship of mutual respect. Without that, progress is impossible. If family members are angry and abusive, treating administration and staff members with hostility, interrupting them and showing no respect, there can be no possibility of a working relationship. The family members will accomplish nothing and the residents will suffer.

It is a very human tendency to believe we can control others with the intensity of our passion. But that is an illusion. Coming on too strongly does not bend others to our will. It only poisons the relationship, creating resentment and a lack of desire to cooperate. Even if you obtain a temporary appearance of compliance, people who become the object of your disrespect or who feel that you are bullying them will find a way to sabotage you eventually. At the very least, they will not do you that extra favor when you need it most.

The secret to good negotiation – and make no mistake, family members and facility representatives are constantly negotiating with each other – is to make the other person want to help you. This can usually be accomplished by beginning with an assumption of good will, treating others with respect, showing that you recognize the difficulties of their job, that you value their assistance, and that you are willing to cooperate. That does not mean giving in or in any way compromising your values and rights.

The best way to deal with one’s own anger is to channel it. Don’t express it the moment you feel it. Use it as a source of energy and motivation. It’s the difference between a floodlight and a laser. A floodlight is all over the place, but it doesn’t move anything. A laser focuses energy on a single point and turns that energy into a force that can truly impact the environment.

A good way to channel one’s energy is to focus it into the “Two Magic Questions.” Instead of just venting one complaint and moving on to another, for each issue you want resolved always ask the following two questions:

  1. What specific steps will you take to resolve the problem?

  2. When can I follow up with you?

These two simple questions accomplish a lot. The first induces the facility to commit to a plan of action. And the second gives you permission to nag them if the problem takes time to resolve. These two questions enlist the facility as a partner in solving the problem. And without a partnership, problems do not get solved.

There are other things to watch for that can disempower a family council. We have already addressed the question of structure. A lack of structure in family council meetings will turn the council into a social gathering or venting session and it will go nowhere. Another important thing to notice is attempts by the facility to control the council.

This can happen in a number of ways. The administration may demand access to the council’s minutes. They are not entitled to view those minutes unless the members wish to share them. The administration may want to set the council’s agenda or run the meetings. They are not entitled to do that either. Within reasonable bounds the council’s autonomy must be respected. If a staff liaison is present, make sure that person plays a supportive and not a leadership role. Achieving an atmosphere of both sides supporting each other is the most effective way to be of service to the residents, who are our ultimate concern. This may not always be possible but is always something to strive for.

Very important: This final point deserves special emphasis because it addresses a universal problem. It is of course to be expected that family members are motivated to join the council out of concern for their own loved ones living in the home. However, if that is where the concern ends, the council will not function. Often family members may want to discuss only their own relative’s problems, then lose interest when the topic shifts to something else. They may even become resentful when the administration refuses to discuss their individual case in a public forum (which, as we mentioned earlier, the facility is legally constrained from doing).

What every family member needs to understand - and this may involve a learning process - is that the council will benefit their loved one only to the extent that it benefits all residents. Each family member must come to see every other family member’s loved one as part of one family. A family council will succeed to the extent that its members move beyond their own individual interests and dedicate themselves to the common good. An ideal family council is a caring community that works because its members understand that love does not stop at one’s family of origin but grows to encompass the common family of all.

In Conclusion

Forming an effective family council is a delicate process. There will be sources of frustration from within and without. It is important to keep one’s focus and maintain a positive attitude. We have dealt with possible negativity from the administration. One may also encounter negative attitudes from family members who do not attend meetings, who say the meetings are a waste of time. Therefore the council needs to play an educational role. First, it should rack up a set of accomplishments through establishing positive working alliances with facility personnel. Then it should publicize those accomplishments through a newsletter and by word of mouth. The monthly (or quarterly) mailing that the facility sends out can be used not only to announce meeting times and dates, but to inform and educate families about the council. It is a perfect opportunity to send out a one- or two-page newsletter.

Very gradually the family council can become known as a presence in the facility, to which family members may turn when they need advice and support. Another valuable source of information is the long-term care ombudsman, whose mission includes supporting resident and family councils. You may also contact the Alliance of New York Family Councils for guidance and possible mentoring.

So know your rights, know to whom you can turn, and you may find your family council doing very valuable things for the people you love.

April 2016