Under 65 in Long-Term Care: Making Room for Voices We Too Often Miss

When people picture someone living in a nursing home, they often imagine an older adult. But where does that leave younger residents whose disabilities or complex medical needs have brought them into long-term care?

My son, Lynn Ray, is one of those residents. At 38, he brings his own interests, relationships, preferences, and expectations to the place he calls home. His need for care does not erase his adulthood or his right to shape his daily life.

Bringing Lived Experience to the Stage

A recent professional challenge was finding a meaningful way to help attendees at the National Consumer Voice Conference understand how unprepared the long-term care system can be to meet the needs of residents under 65.

I approached this by thinking beyond what I could explain in a traditional presentation. While I could describe the challenges and suggest improvements, bringing Lynn into the session allowed the audience to hear directly from someone living that experience.

Instead of speaking only as a parent and advocate, I created space for Lynn to share his own perspective. His participation helped turn an issue people might understand intellectually into something deeply personal and real.

Lynn was my partner in communicating this message. He contributed something I could not provide on his behalf: his own voice and lived experience. The audience thoroughly enjoyed hearing from him, and their response showed how much they learned through his participation.

Being included means having influence.

That experience raised a question that reaches far beyond one conference: How often do we discuss the needs of people living in long-term care without meaningfully including them in the conversation?

Shifting the Perspective

Families, advocates, and professionals have valuable knowledge. But even when we know someone well, our perspective cannot fully replace their own. We need to ask residents what matters to them, provide the support they need to communicate, and be willing to act on what we hear.

For younger residents, it means making room for conversations about friendships, meaningful work or learning, relationships, privacy, community involvement, and how they want to spend their time. Those conversations matter for older residents, too. No one’s interests or ambitions should be assumed because of their age or diagnosis.

Ageism affects people across the lifespan.

For Gray Panthers NYC, this is an opportunity to connect our intergenerational advocacy with the everyday experiences of people living in long-term care. When we build services around a narrow idea of what a resident wants or needs, we risk overlooking the individual.

The answer is not to pit younger residents’ needs against those of older residents. It is to recognize that everyone deserves care that respects their identity, choices, and stage of life. A shared address does not mean shared preferences.

Passing the Microphone

Lynn’s participation reminded me that creativity in advocacy does not always require a new program or complicated strategy. Sometimes it begins by changing who holds the microphone—and making sure their words carry weight.

We can bring that approach into care planning, resident councils, staff education, conferences, and policy discussions. We can ask whose voice is missing, what barriers keep them from participating, and what support would make their participation possible.

Then we must follow through. Listening matters most when it helps shape decisions.

The conference reminded me that my role as an advocate includes creating opportunities for others to advocate for themselves. Lynn had something important to contribute. The audience benefited because they had the opportunity to hear it.

People living in long-term care deserve a voice in the decisions that shape their lives—at every age.