Residents’ Rights: How to Become an Advocate for Your Loved One

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If your loved one is living in a skilled nursing care center, it’s critical that you understand his or her rights as a resident. Knowing and protecting these rights will help ensure that your loved one receives the person-centered, quality care that best meets his or her needs. Care Conversations spoke with Ruta Kadonoff, Vice President of Quality and Regulatory Affairs at the American Health Care Association, to discover how family members can best advocate for their loved ones in a skilled nursing care center.

Care Conversations: What does person-centered care look like to you?

Ruta Kadonoff: Person-centered care is grounded in the core values of dignity and respect. It’s about making sure each unique individual has the freedom to make fully-informed decisions about his or her care. By focusing on close, continuing relationships, person-centered care holistically promotes growth and development at every stage of your loved one’s life.  It requires that a center’s staff know your loved one well and put his or her needs before the task at hand.

CC: What is the most important thing individuals should understand about their personal rights in a skilled nursing care center?

RK: It’s important that individuals know that living in a skilled nursing care center doesn’t take away any of the rights they had before becoming a resident.  They should also understand that they are guaranteed additional rights by the 1987 Nursing Home Reform Act, including:

  • The right to be treated with dignity and respect.
  • The right to privacy, and to keep and use personal belongings and property as long as it doesn't interfere with the rights, health or safety of others.
  • The right to be informed about their medical condition and medications, and to see their own doctor. They also have the right to refuse medications and treatments.

I often encourage families to check out a complete list of skilled nursing care center residents’ rights. The Centers for Medicare and Medicaid Services has a list that you can download and print for your family.

CC: Why is it important for families to have a solid understanding of these rights?

RK: Some individuals in a skilled nursing care center may experience health issues that make it difficult to advocate for their own rights…

CC: …like individuals with Alzheimer’s or Parkinson’s disease?

RK: Yes, exactly. In these cases, the individuals may look to family members to help them navigate the situation. It’s important for both you and your loved ones to be informed and know what to expect. Knowing how to fully participate in your loved one’s care will help ensure that he or she has the best possible experience.

CC: So how can families become better advocates?

RK: Think about what information you can provide to the staff of a skilled nursing care center that may improve person-centered care. What are your loved one’s likes and dislikes? What are his or her personal interests? What kinds of things help make your loved one comfortable, and what causes him or her anxiety?  All of these things can help shape a better care experience for your loved one. 

CC: Are there appropriate times for families to discuss their loved one’s care with a center?

RK: After your loved one arrives at a skilled nursing care center, you should be offered the opportunity, with his or her permission, to participate in a care planning meeting. These meetings, held periodically, are a time to discuss, review or change goals and expectations for care. The center should work with you to schedule meetings so that you are able to participate, either in person or via other means.  You can also use visits as an opportunity to check on your loved one and interact with staff. It may help to share any concerns, discuss what is working well and talk about if there are any changes that you or your loved one would like to see.

CC: Are there any resources you recommend families take advantage of to address concerns for their loved one?

RK: You may want to begin with the nursing care staff or supervisors on the floor since they are the people who interact with your loved one most often. You can also speak with the Nursing Home Administrator, Director of Nursing or social services staff to address concerns. 

Beyond the center, there is a network of state and local ombudsmen who can also provide support.  These ombudsmen serve as advocates for those receiving long term care services.  They can help facilitate communication and problem-solving between you and the center’s staff.  If your family needs to reach out to an ombudsman in your area, The National Consumer Voice for Quality Long-Term Care has a locator tool that can help you find contact information.  

Ruta Kadonoff, MA, MHS, is Vice President of Quality and Regulatory Affairs at the American Health Care Association. With more than 20 years of experience in the aging services field, she is a long term care quality specialist and advocate for person-centered care.