The Family Council |

The Family Council

by Kate & Jerry Ricks

Family Councils are good for nursing homes, just as parent organizations are good for schools. It may be one of the few places where you can vent the frustrations you might feel about your loved one to someone who really understands by virtue of their own experiences.

What is a Family Council?
You will not see the term Family Council spelled out in any Federal law or regulation, but that term is used in some state and local laws and regulations and in many publications from various agencies. In the Federal regulations they are instead one of two types of groups of individuals which are empowered by those regulations with certain rights. Those groups are defined by regulation as being primarily comprised of residents and of families of residents. The groups of residents, such as Resident Councils, are discussed at some length in other portions of this book. Here we will concentrate on the families of residents and groups that those families may choose to form.

Some state and local laws and regulations further define and empower Family Councils. Find out if your home is in one of those regions. Know and insist upon the rights you have been given.

To qualify as a group as defined by the Federal Regulations and interpretive guidelines the members of that group must meet regularly to discuss life in the home or for any other purpose! That’s right, a group of family members may meet regularly to conduct any sort of business whatsoever and still be afforded the protection and the rights of these regulations. But we’ll confine our discussions here to the business that would ordinarily be conducted by Family Councils.

Here is a portion of the Interpretive Guidelines for surveyors (inspectors) of nursing homes:

“A resident’s or family group” is defined as a group that meets regularly to:
- Discuss and offer suggestions about facility policies and procedures affecting residents’ care, treatment, and quality of life;
- Support each other;
- Plan resident and family activities;
- Participate in educational activities; or
- For any other purpose.

What rights do Family Councils have?
The applicable Federal Regulations are quoted below:

A resident’s family has the right to meet in the facility with the families of other residents in the facility;
- The facility must provide a resident or a family group, if one exists, with private space;
- Staff or visitors may attend meetings at the group’s invitation;
- The facility must provide a designated staff person responsible for providing assistance and responding to written requests that result from group meetings;
- When a resident or a family group exists, the facility must listen to the views and act upon the grievances and recommendations of residents and families concerning proposed policy and operational decisions affecting resident care and life in the facility.

The Interpretive Guidelines for surveyors clarifies this regulation by stating:

“The facility is required to listen to resident and family group recommendations and grievances. Acting upon these issues does not mean that the facility must accede to all group recommendations, but the facility must seriously consider the group’s recommendations and must attempt to accommodate those recommendations to the extent practicable, in developing and changing facility policies affecting resident care and life in the facility. The facility should communicate its decisions to the resident and/or family group. “

What? Only FIVE rights?
Yes, but they are important, powerful and far-reaching ones. Let’s consider the implications of those rights. The meetings are or at least can be private. So, the Family Council determines what takes place during the meetings, how they are conducted, who attends and in general, how the Council is governed. It is self-governing. It may choose who may attend its meetings and when they are held. It may choose to adopt by-laws, but is not obligated to do so. Since they may meet privately, the Family Council may choose to invite or not invite any staff member or any other person to attend any of their meetings. Staff members may attend by invitation only.

If the topic of discussion is a proposed Fire and Emergency Evacuation Plan, it might invite the local Fire Marshall or Fire Department Chief to attend and make a presentation at one of the meetings. The local long term care ombudsman may offer some insight that is often welcome at Family Council meetings and could have a standing invitation to attend and participate. When answers to certain health care problems are sought, the Director of Nursing or the Medical Director might be willing to give a short talk or to lead a discussion on a certain issue. Long term care advocacy organizations are a good source of information so representatives of those groups are often invited to speak or to participate in discussions.

With a single point of contact, the Family Council does not necessarily have to direct their questions and comments to the appropriate staff member or department. The contact person is obligated to get Family Council communications to the right department or staff member and respond to those communications.

Who may attend Family Council Meetings?
As noted above, the Family Council can meet privately and is thus a self-governing entity. Its members determine who may or may not attend.

Who may be a member of a Family Council?
The members of the Family Council determine the limits of its membership. They may choose to include those who formerly had family members as residents in the home, but whose residents have died or left the home for other situations. Members of advocacy groups might be considered for membership, as well as those who represent residents of the home who have no family available for membership. A resident is not limited to having only one representative on the Family Council. There is nothing that limits the membership, other than the Family Council itself. This is not a group that is required to be elected or designated by a resident. It is not unusual for a single resident to have two or more family members on the Family Council and sometimes also have a friend or advocate there as well.
Unfortunately, there are far more residents who do not have a family member or other caring person on a Family Council. So, most Family Councils are always looking for new and active members. More members means that there are more eyes and ears on the residents’ quarters and different ideas about how things might be easily changed to improve the care or quality of life in the home. A larger group means a louder voice. The most important qualification of a member is that the person cares; cares about people in general, how they are treated, and specifically about the treatment and quality of life of the residents of this home.

If a person cares enough to take time out of their busy schedule to attend regular meetings and participate in discussions on things that affect life in the home, they should be considered for membership. About the only thing that should exclude a person from membership would be a conflict of interest caused by a tie, either financially, professionally or personally, with the nursing home’s owner, its administration or its staff members. You might be thinking that the regulations previously quoted only apply to family members. That is true, but only to the extent that they allow such groups to exist with certain rights. The same regulations allow for private meetings and do not limit the attendance to family members. We might have an ‘outsider’ who, with the agreement of the families, regularly attends the meetings. This person contributes to the discussions, offers advice and guidance on how some problems might be handled and even, with the agreement of the families, votes on issues requiring a vote by the by-laws of the organization.

If we have this non-family member who is doing all these things, just as the families are, are they members? Does it really matter? They are at least members in fact, even if they are not part of the blood or marriage-related family of any resident. A case might also be made that they are indeed family of one or more residents. They care enough to advocate for the residents. They may or may not have at one time lived with one or more of these residents. With the present trend towards legalizing the positions of those who are not joined by matrimony but are in other ways family members of another, it should not come as a surprise to see an advocate of a resident to be legally designated as a family member so long as that resident is not opposed to it.

Why is the Family Council important?
It may be the only place where you can make a difference in the life of all residents in general, not just for your loved one. There is strength in numbers if those numbers are organized. A suggestion from the Family Council about changing a procedure in the home must be considered and taken seriously by the home. What you as an individual might view as a single incident can, when discussed in a group, be determined to be caused not by the lack of compassion or an error by one staff member, but to have its roots in a policy or procedure which needs to be changed.

Let’s consider an example or two of how a Family Council can help improve things in a nursing home. Mom confides in you that the pork chops served at the home are dry, tasteless and generally too darned tough for anyone to eat, let alone those like her who depend on dentures to do the chewing. You take the matter to the dietician or to the person who is in charge of the kitchen. You are somewhat appeased when Mom is offered a choice of a couple of alternative menu items such as Salisbury steak or meatloaf whenever pork chops are served. The immediate problem of the unsuitable food item is solved for one person, even if it is not the optimum solution even for her.

If you also discuss this problem with the Family Council you may discover that it is not just Mom who has a problem with the pork chops, but at least several other residents as well. You know this because not only has fellow Family Council member Mrs. Smith received similar complaints from her father, but that she has also heard other residents talking about the same problem and has seen at least one resident spitting out the half chewed meat at mealtime. Maybe all the residents feel this way, but are reluctant or unable to speak up about it.

So, as a Family Council you can draft a short note about the problem. But, does it go to the Administrator or to the Dietician or to the Kitchen Supervisor or to the Director of Nursing? The decision on where to send the note is solved for you, since you have been assigned one person who will receive your correspondence and who is charged with getting you a written response. Odds are that in this case the cooking methods will be quickly and easily changed at virtually no cost and little effort.

We are not advising you to refrain from voicing your problems independently in an effort to correct something that is amiss with the care of your loved one. We do feel that many things bear mentioning in Family Council meetings to try to see if they are isolated incidents or are indicative of procedural shortcomings.

How do you contact the Family Council?
The home’s Admissions Director, Administrator or a social worker should be able to give you contact information such as phone numbers or email addresses for the leader (president, spokesperson, etc.) of an existing Family Council. You’ll want to get in touch with that person and find out when and where the group meets. Or, you may see announcements of the Family Council’s meetings posted at conspicuous places throughout the home.

Go to the meetings and become involved in their discussions. You’ll learn a lot from those meetings, and the information you get will be unique to your home, not just general things that you learn from reading this book or other similar publications. And, you will contribute your experiences and knowledge to that group. Having read this book you will have a head start on some if not all of its members. Share this information freely.

How do you start a Family Council?
Okay, let’s assume that the home has no Family Council, or, if one exists it has, for whatever reason, become inactive. In either of these cases it is wise to start one or to revive what once was. Even in the best of homes, the Family Council plays a vital role in keeping the care and quality of life of its residents at a high level. It can also play a part in boosting the morale of the staff who, if they are at all typical, are feeling underpaid, overworked and generally unappreciated.

First you will need one other person who is also a family member of a resident to agree that they want to form a group that will meet regularly. Don’t be too picky about who that person is. It can be another of your loved one’s family. It can be your brother or sister, for example, even though they may not really be too keen on the idea of having to meet with you once a month or so, just as long as they will go along with the idea of your starting a Family Council and realize that you need their help, at least verbally, to kick things off. Once that is done you have already formed a Family Council, a group, in accordance with Federal Regulations.

Talk with the administrator. Tell him that you are starting a Family Council and will need a private place within the home to meet. Also mention that you will need one of the staff to act as a contact person, one who will be able to assist and be a single point of contact in written communications with the administration. Here you are exercising two of your rights as a family council already, even before one is really formed.

You’ll need to contact as many other family members as possible and encourage them to come to the meetings. This can be done in several ways. Place signs throughout the facility announcing the formation of a Family Council and inviting others to attend. Perhaps one of the best ways to get people interested in joining is by one-on-one personal, face-to-face contact. This means that you will need to cheerfully approach strangers in the hallways, entry foyers and sidewalks and engage them in polite conversation. Introduce yourself as the son or daughter (or whatever) of Mrs. Brown on unit 3.

It’s possible that the administration puts out a regular newsletter which is mailed to families. Ask your contact person about that. Ask if it is possible to place and announcement about the new Family Council in that newsletter.

Talk to local radio stations and newspapers. Many of them will publish news of your new group as a public service and will, in many cases, continue to announce your regular meetings a few days before each one occurs. You’ll probably have to call them or email them each month to remind them of the upcoming meeting, however. It is a good idea to ask them to include one or more items on the meeting’s agenda along with the time and place it will take place and a cordial invitation to all families of residents to attend.

The Pseudo-Family Council and how to deal with it.
It is possible that you will encounter what we would like to call a “Pseudo-Family Council.” This is a group that calls itself a Family Council but is run not by family members but by a staff member or members. If you were given a staff member as a contact person for the Family Council, this might be the case.

There are a number of problems with this kind of organization. Firstly, the Family Council must be independent. Secondly, its members and invited guests should feel free to discuss whatever they care to discuss without fear of the content of those discussions being made available to the administration or the staff except when the group explicitly expresses a desire for that disclosure to be made. If a staff member is present and especially if that staff member is conducting the meeting or recording the minutes of that meeting, no such assurances can be made. The idea here is to stimulate and encourage the conversations between family members, not to put a damper on it with any fear of real or imagined repercussions because of the situations discussed or the actions proposed.

We have no problem with the facility’s starting up a Family Council, providing assistance and guidance as required to get the group started and more or less functioning. But, this should be for a short period of time only. Let’s say no more than about six months. After that, the group should be led by family with the staff attending meetings only as requested by the group.

So, you have discovered that this home has a Pseudo-Family Council. What do you do about it? What CAN you do about it? We’d like to suggest that you first attempt to use the organization, the group, more or less as it is, and then attempt to change it into a real, independent, family-run group. At least you have some family members attending the meetings. That is a start.

Attend the meetings and collect information. Even if it is run by the staff, you will probably still find its proceedings helpful and informative. Learn if there have been any by-laws or procedural resolutions passed by the group. Get copies of them if they exist. Work within the procedures allowed by the by-laws or resolutions to effect a change to a real Family Council, even if it means changing those procedural documents. Make formal motions before the membership to change its organizational structure. If all goes well, you will soon have a real Family Council. It will be able to conduct its business privately or with its invited guests.

But let’s assume that there are some rather obstinate individuals in the group who just like things the way they are and that they are numerous enough or influential enough to prevent the changes that you seek to effect. Don’t despair. The regulations are still with you! Let’s review those few lines of regulation that empower the Family Council so you will see what we are getting at. Just flip back a few pages to the start this chapter and reread those few lines of regulations. Is there anything there that prohibits the formation of a second family group? No, there is not. So, that is what you do. You act on the realization that there is no working Family Council and you start one, just exactly as you would have done if the Pseudo-Family Council did not exist. If there is a name battle to be fought here, you may need to call this new group the Independent Family Council or another name of your choice. But you will still have all the rights and protection afforded you by the regulations.

The meetings and how to conduct them.
The meetings of the Family Council can be as relaxed and open or as formal as the group desires. But experience will show that the larger the group, the more formal the meetings need to be to get any business done. Someone, you or a designated leader, has to more or less take charge.

Agenda

Every meeting, no matter how informal, should have an agenda. It might be as simple as this:

Opening remarks by Pat Snowden (or whoever is the leader or the person who called the meeting). This should include a welcome to all those attending with special emphasis on greeting new members or visitors.
Introductions of everyone present. This will need to be a self introduction at the first meeting, including who their resident is and in what unit that resident live. Subsequent introductions should be invited from any newcomers in subsequent meetings.
Acceptance of the minutes of the previous meeting.
Old business, if any.
New business.
1. Food concern on unit 2A.
2. Staffing concern – use of Agency personnel.
Set next meeting date.
Adjourn.

No subject is taboo in these meetings. If one member wants to discuss the problems of his or her resident and needs to explain some medical circumstances or conditions in order to get the point across, they have every right to do so. Don’t let anyone tell you that HIPPA prevents such discussion. It does not. See the Chapter on Issues for more information about what HIPPA does and does not prohibit. One of the primary reasons for these meetings is so that one can voice their concerns, their fears and their frustrations to another who is certainly more apt to be understanding of those problems than the average person.

Minutes

Someone should record the proceedings. By record we mean to write or type a synopsis of what happened, not an audio or video recording. That someone might be a designated Secretary or the leader/organizer of the group. The minutes need not indicate who said what or even who spoke on what subject. You may wish to make the minutes of the meetings public, therefore the identification of the individual remarks or complaints might best be omitted. The minutes should contain the subjects discussed and the decisions made. Those decisions might include sending a letter or email to the administrator or his designated contact person about a concern or a question. The decisions might be reached by a formal vote of those attending or they might be a general consensus as determined and announced by the person who leads the meeting.

More formal meetings

As we mentioned a paragraph or two earlier, the meetings can be quite informal, especially if small numbers of persons are present. But as the group grows in size and the meetings become larger, let’s say to more than 6 or 8 people, some formality is required. We suggest using Roberts Rules of Order (Roberts) as a guide to conducting the meetings of larger groups or even smaller ones if that degree of formality is desired by its members. Even if it is decided not to abide by all of the contents of Roberts, we suggest that the leader become somewhat familiar with this publication in case some unforeseen happening makes adherence to its rules advisable.

Written Correspondence

All communications from the Family Council to the home should be in writing. In this way you will have a history of questions asked, issues raised and responses received. This is important since the persons involved will change. Administrators and nursing home staff do not stay in one place forever, nor do its residents and family members. We do not mean that no informal verbal conversations should be avoided by the members. Quite the contrary; everyone should attempt to build relationships through conversation with every staff member. But if a matter is serious enough to warrant action by the Family Council, it is important enough to put it in writing. If it is in writing, the home is required by regulation to respond. The home has no legal obligation to respond to verbal communications.

We feel that each question, each concern that is brought to the attention of the home deserves its own written document, rather than lumping several unrelated items in one letter. The response from the home is then unlikely to answer just one or two questions and totally ignore (accidentally or deliberately) others.
While the Federal Regulations do require a response to written communications, they do not specify that those responses be within a certain time frame. We suggest that after a suitable time has elapsed, perhaps a month, that a written request for a response be made. If none is received within the next month or so, other actions may be required.

Other Actions

The steps taken by a Family Council are not limited to written communication with the home. It may, if the situation warrants it, file a complaint, as a Family Council, with the state regulatory agency. It may also contact others outside the home, such as long term care ombudsmen. It may decide, after an unsatisfactory response from the administration, to take the matter to his or her superior, whether that is to a corporate regional supervisor or to a board of directors. A letter for publication in the local newspaper might get the results you need.

The Administration: Friend or Foe?

A very effective and well-seasoned family council leader put this in perspective this way. “It is a fine thing when a Family Council and an Administrator work well together. However, it is not necessary and sometimes not feasible for this kind of relationship to develop and to endure. Administrators have a job to do. Family Councils have a job to do. Both of those jobs need to be done and done well. Sometimes and in some places they coincide, sometimes and in some places they do not. The Family Council needs to simply determine it’s job and go about doing it in the best way that they can.”