Imagine being confined to one room for days, months, even years and then finding a home that enables you to regain your independence and, with it, your dignity. The Leonard Florence Center for Living, the country’s first urban Green House® residence in Chelsea, MA, does just that. To this end, the Center cares for more individuals living with ALS than anyplace else in the world. These residents, many of whom are immobilized, have been diagnosed with ALS, MS, and/or are dependent upon ventilators.
One such resident is Steve Saling, a landscape architect who was diagnosed with ALS (amyotrophic lateral sclerosis) in 2006 at the age of 38, just one month after the birth of his son. At the time, he was given a life expectancy of 2 to 5 years to live. In a curious twist of fate, Steve met Chelsea Jewish Lifecare CEO Barry Berman at an ALS symposium. Barry was there to explore housing for the disabled; Steve was researching options for where to live when his disease progressed. The rest is, as they say, history. Steve helped design the Center from the ground up and when the Leonard Florence Center for Living opened in 2010, Steve became its first resident.
Sixteen years later, Steve has inspired, encouraged, and most importantly, has shown by example how an ALS diagnosis can translate into a productive, meaningful life. Today he travels across the country giving presentations, attends Red Sox and Patriot games, as well as skis, skydivers, and sails. Steve proves that ALS does not need to be a death sentence. In fact, individuals like Steve are living longer since they are able to maintain a higher quality of life.
In designing the Center, Steve and Barry focused on creating a place where people with ALS could receive skilled and compassionate care yet live a “normal” life. Through the PEAC automation system, residents are able to move around the residence with relative autonomy. For example, Steve can control the lights, turn on the TV, open doors and raise window shades in his home –all due to an electronic automation system that can be carried out through eye movements or brain waves. As Steve explains, “This technology enables me to have a level of independence previously unheard of for people like me.”
The exterior of each “home” features wood siding, a colorful front door, a mailbox, and a doorbell. Inside, there are two homes on each floor, each comprised of:
- 10 spacious private rooms and baths
- Living room with a fireplace
- Pristine kitchen
- A welcoming dining area that is always adorned with fresh flowers.
It is a far cry from a traditional nursing home. Residents get up when they want, eat when they want, and participate in activities of their choice. They create their own menus, ordering from 24-hour room service.
In 2020, the Stein Family Center for Well-Being opened in the Leonard Florence Center, adding 20 additional private rooms for vent-dependent residents. Offering state-of-the-art portable ventilators in a Green House® model of care, these multi-function ventilators are the first and only ones of their kind on the market. They provide a unified respiratory system that makes it easy to switch and customize therapies, creating a simple system to use and manage. Most importantly, these ventilators offer greater mobility, enhancing the quality of life for residents. The extreme isolation typically affecting people on vents is eliminated. Instead, residents are able to interact with other residents, staff, and visitors. Currently, 40 of the 100 rooms in the skilled nursing residence are devoted to individuals living with ALS, MS, and those who are ventilator dependent.
Beyond the day-to-day activities, the Center orchestrates trips and outings for the residents. There are group trips to Disney World, New York City, Maine, and Washington, D.C. Residents participate in weekly outings such as sporting events, concerts, movies, shows, and cultural activities. As one would expect, these excursions take a great deal of planning in terms of the logistics and the availability of trained staff members 24 hours a day.
For Barry Berman, the objective is simple. He merely wants to give the residents the dignity they deserve.
“Many of our ALS residents hadn’t experienced a shower in years before they moved into the Center,” said Berman. “Every human being should have warm water cascading over their body. That’s not an innovative concept. It’s just human decency.”
The Leonard Florence Center for Living enables individuals with ALS a chance to live via cutting-edge technology, modern design, and skilled and compassionate staff. While finding a cure for ALS is the ultimate goal, it’s imperative that the people living every day with ALS have access to housing and care options that allow them to live full, active lives.
Perhaps Steve Saling sums it up best.
“Don’t make the mistake that all my doctors did and assume that because I am 100% dependent on the care of others for the rest of my life, I don’t have a quality of life. Actually, I can’t imagine enjoying life more. Life is good.”
To learn more about the Leonard Florence Center for Living, please visit www.chelseajewish.org/als-ms