Steve Saling, a former landscape architect, was diagnosed with ALS in 2006. He now lives in the Leonard Florence Center for Living in Chelsea, Massachusetts — a facility that uses high-tech innovations to allow those living with the neurodegenerative disease to have greater independence.
Saling isn't just a resident; he also helped to design the home, which is now occupied by 30 people.
“I was told my life expectancy was between three and five years,” he told NBC’s Jo Ling Kent. “I’ve always had a problem with authority. Always question why, and in this case, I questioned why I would die within five years if I choose to use all of the technology that is available to me.”
In the mid 2000s, Saling and Barry Berman, the CEO at Leonard Florence, teamed up to take the assisted living facility to the next level by creating the first smart home built specifically for ALS patients.
"In a time when everyone depends on their smartphone and computer in the clouds, there is no excuse for leaving the disabled behind," Saling said.
Saling’s last motor function left is the movement of his head. There’s a small dot on the center of his glasses, which works as a computer mouse to direct a cursor on the screen. With this seemingly mechanism, he is able to use the technology weaved within the entire house to be almost entirely independent.
The technology gives him the ability to open doors, control lights and window shades, adjust the thermostat, change channels on the TV and control other electrical devices within his bedroom.
“All of this technology means that I have a level of independence previously unheard of for people like me,” he said.
There are 30 people who have ALS currently living at Leonard Florence but, according to Berman, there are hundreds more on the waiting list.
“There's just such a tremendous, tremendous need to offer this quality of life to so many other pals that are trying to get in,” he explained.
It costs around $200,000 a year per resident to keep Leonard Florence running. Saling is able to live in the smart home thanks to charitable donations, along with Medicaid.
Berman continued, “It could be done elsewhere as long as an organization had the commitment and the funding and the philanthropy to make it happen.”
Both founders of this groundbreaking technology want big tech companies to join their cause and help them build similar facilities in different locations.
“It is not currently available because the company who created it is too small to sell it affordably,” Saling explained. “I would like Google or Microsoft or Amazon to pick it up. It would be a great addition to Alexa, don't you think?”
In the meantime, Saling says he will continue to advocate for others with ALS and exercise the freedom he has at his own home.
"ALS was not the end of my life, just a change in its direction,” he said. “I figure you only live once. Might as well enjoy it."