How to Be Your Own Advocate

Your “Street-Smart” Guide to Nursing Home Survival

by C. Gourgey Ph.D.

When a loved one enters a nursing home, it can be a traumatic experience. Many nursing homes are large and intimidating, and the atmosphere may seem very impersonal. You may wonder whether your loved one is receiving proper care. When problems do arise you may feel at a loss, not knowing what to do to solve them. This survival guide will help you navigate the nursing home system and advocate for your loved one. The presence of a caregiver who knows how to represent the resident can make a significant difference in the quality of care received. There is much you can do to ensure that your loved one receives the best care possible. For a complete picture of your options as the caregiver of a nursing home resident, please read this guide thoroughly.

As a starting point, make sure you receive a copy of the nursing home’s admissions packet. The packet normally contains a general orientation to the home, names and contact information for members of your loved one’s care team, and information about care plan meetings.

This brochure assumes that you are your loved one’s designated representative or health care proxy. You will need to have this status or the nursing home staff may refuse to talk to you on grounds of confidentiality. Details about the health care proxy are given below.

The Care Team

Know the members of the care team:

The nurse’s aide or certified nursing assistant (CNA) gives direct nonmedical care such as feeding and bathing.

A nurse provides basic medical care to the residents (for example, dispensing medications and adjusting medical equipment). A nurse may be a registered nurse (RN) or a licensed practical nurse (LPN).

The charge nurse supervises the nurses and nurses’ aides on each floor.

The director of nursing is head of the nursing department and supervises all of the nurses and CNAs.

The nursing supervisor or nurse manager assists the director of nursing and can help with nursing issues when the director of nursing is not available.

There is a physician directly responsible for each resident’s medical care. The medical director oversees all medical care within the home.

The social worker offers counseling, addresses the resident’s psychosocial needs, and handles administrative matters such as insurance and discharge planning.

The director of social services supervises the social workers and often serves as liaison to the family council.

The dietician monitors the residents’ nutritional needs and makes sure the menus are appropriate.

The physical therapist helps residents with physical disabilities using various exercises and techniques. It is rehab work if it’s been determined that the resident can recover all or part of the physical function. In other cases, the goal is to help residents maintain what functioning they still have.

The recreational therapist engages residents, either singly or in groups, in creative and enjoyable activities that improve the residents’ quality of life.

The director of (therapeutic) recreation supervises the recreational therapists and plans activities that involve the entire population of the home. In many nursing homes she also serves as liaison to the resident council.

You may also have contact with members of certain allied therapies, such as the speech therapist, occupational therapist, and music therapist.

All are under the oversight of the administrator, who is responsible for running the facility and making policy decisions. Sometimes, especially if the facility is large, there will be a chief administrator as well as a number of assistants.

You may discuss any aspect of your loved one’s care with the appropriate care team member.

The Comprehensive Care Plan Meeting

Every nursing home is required to hold a Comprehensive Care Plan (CCP) meeting for each resident at least quarterly. At these meetings the key members of the care team get together to review your loved one’s care and approve any necessary changes. You have the right to attend these meetings and to make your wishes known. You may ask the home to inform you when these meetings will be held. If you cannot attend the meeting, or if you feel a crisis has arisen making one necessary, you may ask that a care plan meeting convene at a time you are able to be present. Attendance at these meetings is an excellent way to stay current about your loved one’s treatment and to provide any personal information the team may need to make sure that the treatment is optimal.

Other available sources of support include the resident council and the family council.

The Resident Council

In New York State every nursing home is required to have a resident council. This is an independent group of residents who meet regularly to discuss conditions in the home, quality of care, and any other concerns they may have. The resident council may also liaison with the administration and recommend changes in the facility’s policies. Every resident has the right to participate in the resident council.

The Family Council

Like the resident council, the family council is an independent group of family members who meet regularly to discuss conditions in the home and the care of their loved ones. The most effective family councils have direct communication with the administration, either through inviting members of the administration to attend their meetings or by appointing a steering committee to meet with them separately. This makes dialogue with family members possible, and supplies the administration with vital information about the day-to-day care of residents as the family members experience it.

You have the right to organize and participate in a family council. Federal and state regulations give you that right, and require the administration to respond to your concerns. In addition, New York State regulations require the nursing home to provide family members with a private space for meetings at least once a month, and to help the family council publicize its meetings. You should find information about the family council in the nursing home’s welcome packet. If it is not there, inquire at the department of admissions or social services.

The purpose of a family council is to empower family members when dealing with the administration. Therefore the family council’s leaders should be family or friends of residents, and they determine the council’s agenda, with input from the membership. The administration must not play a leadership role in the family council, but it may play a supportive role. The administration must provide a contact person to liaison with the staff. For more information about family councils and how they work, see How to Form and Run a Family Council in Your Facility.

Be sure to attend family council meetings as often as you can. The more people present, the more clout the council will have with the administration.

The Health Care Proxy

Since the passage of the Health Insurance Portability and Accountability Act (HIPAA), health care institutions have become much stricter about sharing sensitive information. If you don’t have official status to represent your loved one, the staff may refuse to talk to you. In New York State this official status takes two forms. The designated representative is authorized by the resident to talk to staff and receive information. The health care proxy (or “health care agent”) includes the above, plus greater authority to make decisions about treatment if the resident no longer has the capacity to do so. The resident designates the health care proxy by signing a special form (also called a “health care proxy”) in the presence of two witnesses. If the resident has not yet designated a proxy, you may speak to your social worker and ask that the form be provided and the procedure carried out.

Early this year (2010) the Family Health Care Decisions Act became law in New York State. This law provides that certain individuals close to an incapacitated resident have the authority to make decisions about treatment even in the absence of a signed health care proxy. These individuals are, in order of priority:

A court-appointed guardian.
A spouse or domestic partner.
A child older than 18.
A parent.
A sibling.
A close adult friend or relative familiar with the resident’s wishes.

Note that this order of priority is not the order your loved one might prefer. Perhaps the resident is your mother, who is estranged from her husband and who trusts you more than anyone. Without a signed advance directive, your father would take priority over you. This law is also fairly new; HIPAA is older and by now more entrenched, so you may find having that signed form a practical necessity. It is always best to designate a health care proxy in advance. Do not put it off; make it one of the first things you accomplish after your loved one’s admission to the nursing home, if you have not already done so.

If You Have a Problem

Occasionally in a large and often impersonal institution such as a nursing home, problems will arise. There are sources of help, but there is also much you can do to help yourself and your loved one.

It is always helpful to assume good will on the part of the staff. Unless you have evidence to the contrary, assume that they, like you, want the best care for your loved one. You are present to provide information that will help them deliver such care. Always try to make friends rather than enemies.

In trying to resolve a problem, start at the level closest to direct care and go higher only if necessary. Find the appropriate staff person. If the problem involves any aspect of nursing care, speak to the charge nurse. If food is the issue, see the dietician. If the issue is medical, consult the physician. If it is administrative, see the social worker. If you fail to receive a satisfactory response at these levels, you can go a step higher: for example to a nursing supervisor, or to the medical director, or the director of social services. The administrator of the home is at the highest level. Some administrators are very receptive to speaking with family members; others are not.

Before taking any action, this one step is most important: Document everything. When you visit, have a small notebook with you. Keep a written record of any issue or incident that arises. Make a note of everything you observe about the incident, including the date, time, and shift on which it occurred. Obtain the names of any involved staff members. All staff members must wear clearly visible identification badges, and must give their names when asked. If they fail to do so, that in itself is a basis for complaint.

You do not need to show the staff your notes or even mention that you’ve taken them. Do not use the notebook as a threat. Just have the information handy when you need it.

When you do talk to a staff person about resolving an issue, always remember to ask the Two Magic Questions:

What specific steps will you take to solve the problem?

When can I follow up with you?

These two simple questions can take you far in achieving a focus that can break through a logjam of confusion and stalling. Record the steps given in response to Question 1, then be sure to follow up when directed in Question 2. Observe the cardinal rule: Be polite, but persistent. Polite persistence is the most effective strategy for getting what you need in a nursing home. If you are polite, the staff will have no reason to dismiss you. If you are persistent, the staff will know the complaint will not disappear until the problem is solved. The importance of courtesy cannot be overstated. If you raise your voice, become strident or abusive, you will be tagged as aggressive by the staff and your efforts to help your loved one will suffer. If you overdo it, you may even be barred from the facility or your visits may be restricted.

Sometimes no matter how far up the chain of command you go, you may fail to get a satisfactory response. You still have a number of options:

You may write a detailed complaint letter to the administrator and/or the director of social services. Include as much relevant detail as you can: dates, times, and places when problems occurred, the names of staff members and witnesses who were present, what happened and what did not happen. Mention the steps you already took to resolve the issue. Also state what actions you would like to have taken. Now you have an official written record of the incident. You can also file an official grievance using a form provided by the facility.

You may take your complaint to the long-term care ombudsman assigned to your facility. This ombudsman is a state-certified advocate with the authority to intervene on behalf of a resident with that resident’s permission (or with the permission of the family member if the resident is not capable of giving permission). Nursing homes are required to display information about the Ombudsman Program and to furnish that information when requested. If your nursing home does not have an ombudsman assigned, you may call the Long-Term Care Ombudsman’s Office directly and make your complaint there. The New York State Long-Term Care Ombudsman’s Office can be reached at (855)582-6769, or, from outside New York State, (518)408-1469. In New York City call (212)812-2901.

As a last resort, you may file a complaint with the Department of Health. The Department of Health Nursing Home Complaint Hotline is (888)201-4563 and may be called 24 hours a day, with live representatives available during weekday business hours. You may also submit a complaint by fax at (518)408-1157 or write to the DOH at:

Centralized Complaint Intake Unit
161 Delaware Avenue
Delmar, NY 12054

Or you may send an email with detailed information about the complaint to:

nhintake [at] health.state.ny.us

Be sure to provide your name, email address, and contact number.

Important: Before contacting the Department of Health make sure you have prepared your case very well. Just telling them that something bad happened and you want them to do something about it is not likely to get you very far. Document your case thoroughly, with names, dates, times, and details. Your Long-Term Care Ombudsman’s Office may be able to help you identify any specific regulations the facility may have violated.

Finally, one common concern family members have is that if they become too vocal they risk retaliation against their loved one. While there are no guarantees, staff misbehavior is much less likely if staff members know that someone is watching. If you are an active presence in the home, your loved one is likely to receive better care. No one can be a better advocate for your loved one than you yourself. You have everything to gain by showing the staff you are actively involved, and by politely speaking up when problems occur. You have more power than you realize, and when wisely used it can definitely improve your loved one’s quality of life and your own peace of mind.

C. Gourgey Ph.D. is a national board certified and New York State licensed music therapist, and has years of experience as a resident advocate and family council leader.