Alliance of Family Councils of NY

Two Valuable Resources

The Family Council and the Long-Term Care Ombudsman

Charles Gourgey

According to the New York State Department of Health, “A family council is an organization of family members, friends, or representatives of two or more residents of a residential health care facility.” Family members have the right to organize for the purposes of mutual support and making their concerns known to the facility administration. Family Councils are essential, because the unified voice of many carries more weight than the lone individual. Family Council members can also learn from each other’s experiences.

Family Councils are designed to address issues that affect the entire facility. Such issues include but are not limited to lost laundry items, unsavory food, staff attitudes, building temperature (too hot or too cold), staffing shortages, activities, and a host of other concerns affecting every resident who lives in the home. Effective ways of bringing these issues to the attention of the administration exist and are described here.

There is, however, one thing family councils are greatly limited in handling: individual issues.

Why? Because of HIPAA (the Health Insurance Portability and Accountability Act of 1996). HIPAA is a very strict privacy law limiting the information that health care providers can disclose about individual residents. So let’s say the Administrator of the home has been invited to a Family Council meeting, and Mary Portland wants to know why her Aunt Regina is still being fed a puree diet when her swallowing has improved. The Administrator is legally bound not to answer such questions in public. Ms. Portland is strongly encouraged to make a private appointment with the Administrator or Director of Nursing or Dietitian, or better yet, call for a care plan meeting. But she cannot expect the Family Council to present the question to them.

This is important to understand, because it has been a cause of resentment in many family councils. Family members, understandably and appropriately concerned about their loved one’s care, come to the Council to find specific solutions and may go away angry if their questions are not addressed.

Of course this does not mean it’s not worthwhile to attend the Council. The Family Council can offer Mary guidance on how to advocate on her aunt’s behalf, even though it cannot engage in that advocacy nor can it propose specific solutions. In addition, systemic issues affect the health and well-being of everyone, Aunt Regina included. She will benefit greatly if her niece becomes a regular attendee and raises issues that do not require confidentiality. Perhaps the air-conditioning in the room does not work. Chances are other residents are having the same problem. Input from several families will be more effective than just one in accomplishing swift change.

There are other important reasons to attend the Council. Family Councils are educational opportunities. Speakers may present topics of vital interest, such as procedures for making complaints, understanding the structure of the nursing home, advance directives, palliative care, residents’ rights - the list is endless. Family members will gain much knowledge from a good Family Council that will help them become better advocates for their loved ones.

Another good reason to attend is networking. Getting to know one’s fellow caregivers, becoming acquainted and known to administrators and department heads, will make one’s experience in the nursing home more bearable and help one navigate the system.

But what about Aunt Regina’s puree diet?

There is an important resource available to family members for resolving their individual problems in addition to what we have already mentioned. That is the Long-Term Care Ombudsman. The Long-Term Care Ombudsman Program is considered by law a “health oversight agency,” and so is exempt from HIPAA restrictions. With authorization from the resident or family member, the Ombudsman has the legal right, which the Family Council does not, to advocate on your loved one’s behalf to resolve any issue that concerns that person. The Ombudsman may speak to any member of the staff needed to address the problem and may consult the medical record. So do consider the Ombudsman if you have an individual concern.

The Ombudsman and the Family Council are not mutually exclusive. The Older Americans Act authorizes Ombudsmen to support Resident and Family Councils. Ombudsmen are strongly encouraged to attend the Family Councils in their facilities and offer their expertise. A healthy interaction between the Ombudsman and Family Council is good for the residents, their families, and the facility. And sometimes an Ombudsman can help generalize an individual issue into a systemic concern that affects everyone and that the Family Council can address. If Aunt Regina’s food is always cold, chances are that other residents are also eating cold food and the Family Council can take this on. The Family Council can also use the Ombudsman as a resource of information about regulations and nursing home procedure.

So family members please do know that both of these resources are available to you to help safeguard the well-being of your loved one. Make use of both. Attend the Family Council to help make it strong. And know that the Long-Term Care Ombudsman is your ally.