Advocating for Your Loved One

March 4, 2021July 19, 2022 COVID-19

The past year has been difficult for all of us, but the toll it has taken on older adults, particularly those living in long-term care, has been staggering. When they needed their loved ones the most, doors have been closed. Families are desperate to help, but they don’t know where to start. 

Advocating on an Individual Scale

COVID-19 has redefined how we advocate for residents in long-term care. Now, advocating for your loved one on an individual scale is done mostly over the phone. Families call to check on their loved ones, ensure that their rights are being upheld, and ensure that any issues are being addressed.

Unfortunately, it isn’t always as easy as calling, reaching the right staff member, and coming up with a solution to the problem. Instead, families are often met with barriers, whether that be difficulty getting ahold of anyone or problems working with the LTC community. There are ways to improve your communication with LTC communities to get better results when you advocate for your loved one.

Tips for Communicating with LTC Communities

1. Establish a point of contact: The staff are providing direct patient care and aren’t always able to field multiple phone calls. By establishing a point of contact in the long-term care community, you will reduce the calls you are making. You may need to establish two points of contact, one for general needs and one for nursing concerns. Call the community and find out who your point of contact(s) should be.
2. Establish expectations for returned calls: If you call your point of contact and leave a message, you might be tempted to call back and reach out to someone else. If this is not an emergency, wait for a callback, but ensure that you are waiting for a reasonable timeframe. Establish this timeframe beforehand. If the LTC community says you can expect a callback within 24 hours, and no one returns your call in that timeframe, you can reach out to them again or ask to speak with someone higher up in the chain of command.
3. Take notes: As you’re talking about your concerns, more issues will come up. It is easy to get sidetracked. Take notes so you have something to refer back to during phone calls, meetings, and check-ins.
4. Establish specific resolutions to issues: When discussing concerns, you and the LTC community will work together to try to determine a resolution. Establish a specific and tangible resolution. With a tangible resolution, you can check on the progress and hold the LTC community accountable.
5. Follow Up: Once you have reached a resolution, you need to follow up. Check in with your loved one and the LTC community. Find out if they have done what they said they were going to do. If not, find out why.
6. Contact your ombudsman: We are here to help. If you feel like you aren’t making progress, call us. If you aren’t sure whether your loved one’s rights are being upheld, whether you are being ignored, or whether you need additional assistance, we are here. Our confidential and free program serves to provide you with the education and support you need to advocate for your loved one.

Advocating on a Larger Scale

Now more than ever, families want to help. They want to know what they can do to advocate, not just for their loved ones but for all residents in LTC. Fortunately, there are things you can do to help this vulnerable population.

Ways to Help

1. Tell your story: National Consumer Voice is collecting stories of how this pandemic is affecting residents. Share your loved one’s story.
2. Find resources: Consumer Voice also has resources for families, including ideas to stay connected and ways that families can advocate.
3. Watch webinars: Consumer Voice has webinars about advocating for residents. They have links to the recordings and slides from the presentations. There is one webinar from 6/18/2020 that was about Family Advocacy During COVID.
4. Look into organizations that are advocating: Consumer Voice, Center for Medicare Advocacy, Long-Term Care Community Coalition, and Justice in Aging are some of the organizations advocating for long-term care residents on a national scale. 
5. Reach out to your representative: Discuss your concerns with your representative and let them know what their constituents would like to see for residents.
6. Receive updates: VOYCE has a policy and advocacy program dedicated to engaging in individual and systematic advocacy. You can sign up to receive advocacy updates.

Families and concerned individuals are desperate for ways to help their loved ones and other residents in long-term care. With their dedication and passion, we will see even more strides towards improving residents’ quality of life in long-term care.