Rygiel Supports for Community Living Stays True to Its Principles to Allow People to Age in Place
When discussing what can be done to reform long-term care, it’s easy to focus on what we’re doing wrong. People who have a disability, many of them young, continue to be dumped in long-term care facilities ill-equipped to meet their needs. Our elders – with and without disabilities – are too often stripped of their autonomy and forced into crowded, potentially dangerous congregate settings.
Yet the future of long-term care may be closer than we imagine: Innovative approaches to aging-in-place are happening all around us, and some have been happening for decades. These examples can give us a glimpse of what’s possible and show us the path to get there.
Rygiel Supports for Community Living is one local association whose efforts to provide community-based supports to their residents as they age provides a window into the future. And they’ve done it by turning to their past for continued inspiration.
Rygiel was founded over 50 years ago as a home for children with multiple disabilities, but soon was influenced by the Principle of Normalization and hence, made the decision to deinstitutionalize and move to a model of small group living. But as the children they supported began to age out of the system, the government started pressuring Rygiel to move them away into institutions. Rygiel refused, and to this day, many of those same children – now adults – continue to be supported by Rygiel.
According to Executive Director Donna Marcaccio, these experiences reinforced Rygiel’s commitment to providing services that are “shaped by the needs and interests of the person” and delivered within the community. “We have to keep the sector’s history alive,” she says. “It surprises me how many people I talk to don’t know the history of institutionalization and that it was the people that we support and their families who taught us what was wrong with that system.”
So, when Rygiel faced renewed government pressure, this time to move their older residents into longterm care, they stayed true to their values and stood their ground once again. As a result, they currently support 20 residents over the age of 50 – 7 over the age of 65 – all of whom have complex needs.
How has this approach worked out? Marcaccio points out that they were already capable of managing many issues related to aging due to their familiarity with supporting complex needs. They’ve also proven that allowing people to age in place can be just as, if not more cost effective than moving them into larger congregate settings. “Whether you lived with two people or fifty people was pretty much the same. It’s where the money went that was very different: It didn’t go to the individual, it went to the building’s maintenance, higher insurance, etc.” Marcaccio explains.
In any case, whatever extra support has been required is more than justified by the positive outcomes. The small group living settings and low staff turnover contribute to a much greater atmosphere of familiarity and comfort for residents. “I can’t imagine what it would feel like to live in a chaotic environment where you never know who’s going to walk into your room today to care for you or how they’re going to approach the care,” says Marcaccio. Recently, a woman Rygiel had supported for more than 50 years passed away. While it was a sad moment, Marcaccio takes some comfort knowing that the woman was able to spend her final days at home surrounded by people she was familiar and comfortable with, some of whom she’d known for most of her life.
Asked what others can learn from Rygiel’s approach, Marcaccio offers up a guiding question in return: “If we truly are person-centered and community-based, what does that mean to a person as they move through the life span? If we examine that question, I think it paves the way for how we should respond to individuals.”