How One Family Member Can Be a Catalyst for Starting a Family Council

I. The Purpose of a Family Council

Families are needed as much, or more, by their loved one when he or she enters a facility than ever before. There may be about twenty percent of residents who have no families or have families that live too far away to visit. There may be a high percentage of residents who are physically or mentally unable to understand their rights to quality care and a dignity of life. Most residents are totally unable to advocate for themselves. For all of these reasons, family councils are a necessity for residents of nursing homes.

For positive change to occur in facilities to assure residents’ care and a life of dignity, family members must promote family councils. They may be called family groups or family support meetings, but have the distinction of being independent from the facility. That means that no staff members can regularly attend, influence or participate in the meetings. The future concerning the health and well being of residents depends on the empowerment of the consumer-- who are not only the residents, but also the families.

Experts in the nursing home industry say that a family council is

The best prevention against abuse and neglect,

The best vehicle for conveying to a facility the need for a change in culture,

The best way to assist the activity director in obtaining assistance from the community in providing community activities and other activities,

The best way to provide ongoing appreciation for staff, and

The best way to address systemic issues regarding changes in laws, regulations and policies that affect residents in facilities across the state and nation.

The Pioneer Network Program would suggest that the facility is the residents’ home; the facility serves the residents in their home, according to their individual needs. The residents do not live in somebody else’s place. The staff works in the residents’ home.

II. THE RIGHTS OF A FAMILY COUNCIL IN NURSING HOMES

The 1987 Nursing Home Reform Act guarantees the families of nursing home residents a number of important rights to enhance a loved one's nursing home experience and improve facility-wide services and conditions. Key among these rights is the right to form and hold regular private meetings of an organized group called a family council.

Facilities certified for Medicare and Medicaid must provide a meeting space, cooperate with the council's activities, and respond to the group's concerns. Nursing and other licensed and certified facilities must appoint a staff advisor or liaison to the family council, but staff and administrators have access to council meetings only by invitation. While the federal law specifically references "families" of residents, close friends of residents can and should be encouraged to play an active role in family councils, too.

Specifically, the federal law includes the following requirements on family councils:

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 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 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.

III. The benefits of a family council (or "family support group," a family group may select whatever name it chooses.)

Benefits for the facility

What informed nursing home administrators realize is that when family councils are independent, that these councils can synthesize and consolidate problems, and may serve as part of the solution to problems. Family councils will establish a system for handling complaints, such as having two or three members meet with family members who have complaints each time a family council meeting is held.

Family councils, which record complaints from families to present to the administrator, can be a better way for the facility administrator to learn about complaints than hearing about complaints from individual families.

Facility administrators that are experienced with independent family councils know that at the beginning of the formation of a family council, there will be many complaints. They also know that after about three or four months, the family council agenda will begin to change from primarily reporting complaints to incorporating other ideas, such as discussing what services they can provide to support the facility in making the facility a better place for residents.

Benefits for Residents and the families

There are many benefits to residents when families belong to a family council. Foremost, a group of families has more power in getting a positive resolution to poor care or to the facility denying residents choices, than if individual family members complain.

Families can discuss what is the best approach to resolving problems.
The individual members can link to the community and bring more resources to the nursing home for residents’ interests and pleasure.
Individual family members can check on residents for other family members and report to them.
Family members can check on residents whose families live too far away to come to the nursing home on a regular basis.
Family council members can help new residents and families "adjust" to the nursing home environment.

IV: Starting a Family Council

The model for success starts with families talking about family councils with everybody—other families, residents, ombudsmen, people in your community, nursing home staff, the nursing home administrator, etc. Ask these people how they think a family group could help the facility.

The first step: Finding family and facility interest for a family council, introducing families to the idea, and encouraging families to participate.

Here are some approaches a family member or friend of a resident can use to empower the nursing home administrator and/ or the families to start a family council:

Talk to the administrator about starting a family council. Identify any concerns about a family council and address those concerns. Ask for the administrator’s support in contacting families.
Visit the facility when families are there and ask them if they would like to start a family support group. Tell them about the free TLC in LTC Newsletter, and the TLC in LTC website.
Talk to residents and/ or the resident council and ask them for names of family members that you could contact about starting a family council. Tell residents that if family members met at the facility, that they would be welcome to come too.
Write a letter to all of the families about starting a family council, set a time for the meeting, and ask the facility to mail it to all of the families.
Contact your local long-term care ombudsman. The ombudsman can be an excellent resource and support for identifying and resolving problems on behalf of residents. Federal law requires under the Older Americans Act of 1965 that the long term care ombudsman provide technical support for the development of resident and family councils to protect the well being and rights of residents.

Call toll free to learn the name and phone number of you local long-term care ombudsman at the
Illinois Department on Aging Senior HelpLine: 1-800-252-8966
or click here to view the regional ombudsman list.

Optimal situation: Several families, with the support of the ombudsman, meet with the administrator about starting a family council. The facility administrator is very cooperative and suggests ways of helping.

If the administrator is not immediately cooperative, the families can choose to hold the first meeting at a place other that the nursing home. The important thing is to bring the families together get the family council started.

The second step: Have a meeting where all families and friends of residents are invited.

Establish a date for a family meeting.
At the meeting the organizer of the family council or the tells the families of their rights to such a family support group
Explain that a family council is independent
Tell the families about the benefits of such a group. The ombudsman uses the Profile of Family Councils and the information from the Minnesota Veterans’ Home Family Councils (example ’basics’ and bylaws).
At the first meeting the organizers appoint a temporary chair, vice chair, and secretary until the group is organized.

The third step: Continue to empower families, residents, the administrator, and staff to support a family council

Here are several suggestions to help maintain momentum and assure organizational effectiveness:

Work with the facility to develop flyers about family council information and meeting schedules.
Ask the facility to mail an invitation to all families, either a separate mailing or included with the billing.
Have regular meetings.
Keep up interest and publicity.
Continue networking – Have face to face meetings with all families.
Begin to develop an agenda.
Identify 1 or 2 facility-wide concerns and develop strategies and action plans to improve conditions.
Take concerns to facility staff as a group and work cooperatively with them.
Meet regularly with your ombudsman for technical support and to identify valuable resources.

Each month a family council officer checks with the ombudsman to see what assistance can be provided. The ombudsman follows up as needed and provides information on best practices according to nursing home pioneers, Pioneer Practices, and Residents’ Rights.

Families should feel free to talk to whomever they would like to talk to. Families are not restricted in what conversations they should have, just as they are not restricted in the community.

V. The Roles of the Individuals Involved in Starting a Family Council.

A family member is the best catalyst in empowering families to start a family council. Some family groups have strong leaders and do not need an ombudsman or anyone else to help, but all need education.

The ombudsman informs the administrator and the families about families’ rights to start a family council. (A family member who also acts on behalf of a resident when the resident is unable to act for himself or herself, is considered a "resident" in federally certified facilities. Residents, and therefore, families of incapable residents, have specific rights under federal law, including the right to organize a group. The federal regulations (CRF 483.10(a)(2) state that the facility "must not hamper, compel, treat differentially, or retaliate against a resident for exercising his/her rights." A facility practice many not limit a resident’s autonomy or choice in organizing a group. Any limitation of a resident’s autonomy or choice that may indicate reprisals might be interpreted as abuse of residents.

The ombudsman informs families of the benefits of a family council.

The families are the decision-makers about the family councils.

The families decide who they want to attend the family council meetings.

The administrator totally supports the family council’s freedom to be independent.

A council can be formed if the administrator is against the formation of a family council, but it may, or may not be more difficult, depending on the leadership of the family members. Contact your local ombudsman for assistance.

Optimal situation: The administrator empowers families to start and maintain a family council by having families informed of the family council upon each new admission and personally makes certain that each new family meets the family council and/or officers. The administrator always talks positively about the council and helps to make arrangements for family dinners and other family and council activities.