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I. Introduction

"1987 Nursing home reform act guarantees the families important rights to enhance a loved one's facility experience and improve facility-wide services and conditions. Key among the rights is the right to hold a family council."

Two key words in the discussion of family councils are empowerment and independence. A family council is an independent organized group of relatives and friends who meet regularly to discuss issues and concerns regarding the residents' rights to quality care and a quality of life. A council's purpose is to protect and improve the quality of life for residents and empower families to gain a voice in decisions that affect them and their loved ones."

The laws and regulations state that if a family group exists, the facility must provide a private space to meet. Facility staff must listen and respond to the grievances and recommendations of families. Nursing facilities must appoint a staff member to assist the council, but facility staff, ombudsmen, and volunteer advocates only have access to the meetings by invitation.

II. Family councils offer a variety of benefits including

A. Support and encouragement for families-

1. A family group offers family members the opportunity to share with someone that has had similar experiences.
2. Family council members can develop a system for inviting new families to the council for support and encouragement during the entrance process.
3. Some groups may want to work with facility social services to establish a support group.
4. Families can be a support to each other during bereavement.
5. Social mingling opportunities before or after the meetings allow for a deeper connection and support for family members.

B. Education and information

1. Education about the facility and the duties of each department-One family council planned a series called "prospectus on Caring." In order to learn more about the staff. Cooks, laundry and housekeeping staff, CNA's, etc. each explained their daily routines and duties.
2. Regular review of residents' rights would arm family members with essential knowledge and empower them to resolve issues by working with nursing home staff. If initial resolution steps are not successful families could be informed about next steps such as contacting nursing home owners, legislators, etc.
3. Many families need to be informed of Care Plans. The care plan is a contract for care with the facility. A resident's care plan is the key to quality care that meets individual needs. Families have the right to be informed of and attend the care plan conferences if their loved one wishes.
4. Information on disease processes is vital for families. The Alzheimer's Association and similar groups can be invited to the council meetings to educate families
5. Advocacy groups (ombudsmen, Alzheimer's Association, etc.) would be available for presentations on various topics.
6. Many families may be interested in the Department of Public Health and the survey process. Families need to know more clearly their role in the process.
7. Pioneer Network practices are innovative models of care that nurture the human spirit while retaining staff in nursing homes. These Pioneer models of care move away from the traditional medical model that focused solely on the treatment of disease and begin to think of caring for the entire person. A family council familiar with the principles of the Pioneer Network could work with staff on the implementation of these practices.
8. The Medicare/Medicaid system often raises questions for families. The council can ask facility staff to explain the details of the Medicare-Medicaid system.
9. The council can ask staff share information from conferences they have recently attended such as the Pioneer Workshops, Alzheimer's Conference, provider association meetings, etc.
   
   Families can then work with staff on implementing ideas from those conferences.

C. Discussion and Action on concerns

1. Perhaps most importantly, a family council gives families a "united voice in a united effort." Working as a united group in igniting change is an opportunity for families to feel empowered and to have "a say" in facility decisions that affect their loved ones.
The key to making progress on issues is to take the focus off of individual concerns and place it on common issues. The council leadership needs to encourage the council members to synthesize and consolidate problems to find the systemic issues that affect a majority of residents.

Individual concerns cannot and should not be ignored, but the council should develop a system for handling individual complaints such as setting aside only thirty minutes every other meeting for individual concerns, or designating a small committee to field the concerns. Families need to be educated on how to be their own advocates.

2. The first step to resolving the issues identified by the council is through cooperation and creativity with staff. Brainstorming for solutions within the council and with staff liaisons helps the council take a proactive role in change. "Taking an advocacy role does not mean being confrontational. Encourage families to be credible and reasonable."

3. A family council may want to consider working on issues in cooperation with the resident council. Planning and holding special events together creates a feeling of community.

4. A family council can benefit the incapable residents in the facility. For those unable to voice their needs and desires, family members are the best resource staff has for knowing the resident. Incapable residents can be given a voice through a council's advocacy.

D. Communication with facility

1. Increased communication with families is an important benefit for facilities. Facility staff need to know what consumers need in order to provide care that meets expectations. A family council would allow facility staff to prioritize action on facility issues.
Facility staff must remember that because the council has concerns, it does not mean that good things are not happening.

2. A family council can be a facility's sounding board for new ideas and improvements.

3. Family councils can participate and help in facility events and special projects.

4. For a family, communication with facility staff offers an opportunity for staff to know their loved one as a person instead of as a patient- who they are and what their past was like.

5. A family council that makes staff appreciation a priority will be a large benefit for everyone. Staff appreciation may aid in the retention of staff. Families and direct-care staff are natural allies, but heavy staff turnover and other factors hinder efforts to build meaningful bonds. Increased family involvement and staff appreciation programs can spawn meaningful bonds, increase staff retention, and increase the quality of care benefiting the facility and the residents.

E. Services and Activities for residents and staff

1. Families know what their loved ones like and need and can aid the activity department in planning programs that meet individual needs.

2. The council may want to help in volunteer recruitment to be assigned various duties in the facility.

3. The family council members are the connection to the outside community for residents.

4. Cooperation with staff on special projects

Example: residents want books on tape. No funds available. Resident and family council can ask the community for used books on tape and used tape players.

5. STAFF APPRECIATION-- important to encourage staff.

Helps in retainment

Bulletin board that highlights one staff member for exemplary service and why.

Remember-Family councils offer

• empowerment for families,
• increased advocacy for residents,
• facilities the chance to know what their consumers need and partners in change, and
• a community for everyone

III. Getting Started

There is no foolproof, cookie-cutter approach to forming an effective council. Impetus must come form each particular group's concerns and vision.

Some councils are more social, others may have more of an advocacy role.

Decide on time and place-meet often enough to keep interest

Start meetings on time and end on time.

Come up with an interesting name

Publicity, Publicity, Publicity-in facility and in community

IV. First meeting

Structure-elect at least a chair and a secretary of the council to keep meetings organized and productive.

Decide on a mission statement. What you'd like to accomplish

Brainstorm ideas for what topics people want education about, and what issues qualify for a united effort for change.

Develop a system for communicating with facility administration and staff.

Decide on a system for follow-up and how to track the progress of issue resolution.

Decide how to handle individual concerns-designate a committee or leave a certain section of time in meeting for individual concern discussions.

Brainstorm ideas for special events/ projects for residents and staff

V. Minimum organization

A structure of at least a mission statement or goals

A chair-One advocate suggests " identify two people. One who can work effectively with the administration, and one who is the fire behind getting it going."

A secretary

Written policy on maintaining independence from facility control

When the council will meet

Basic agenda

How the council will handle individual complaints

How members will contact each other

How members will inform others of the council

How council will communicate with facility administrator

A plan for improving service for residents for at least the next three months.