When Margaret Marie needed to grab something out of her bottom drawer, she wasn’t going to call for help.
An independent woman, she lowered her wheelchair as far down as it would go, and gave one last stretch, willing her fingertips just a little bit farther.
But then, she nudged something and the small refrigerator looming above came tumbling down, narrowly missing her but leaving her trapped. She needed help, and the call button for the nurse sat across the room, behind her bed. Salvation was found in the cellphone she always carries.
But what if she hadn’t had that phone, Marie thought. And what about all of her fellow residents of the Boston Home who don’t have a cellphone?
That led Marie, who is 58 and has multiple sclerosis, on an odyssey that would result in a partnership with MIT students and the creation of a system that puts the call button on an iPad. That way, residents with the Apple tablet computer attached to their wheelchair can reach out for assistance wherever they go in the Boston Home, a facility that provides specialized care for adults in later stages of neurological diseases, primarily MS and amyotrophic lateral sclerosis, or ALS.
“We needed something available for people when they’re up and about,” Marie said. “That’s when they’re most likely to get into mischief. At least that’s when I do.”
Last year, Marie’s vision for a mobile call button turned into the class project for a team of MIT undergraduates. One of the students, Beth Hadley, who graduated this spring, stayed with the project another semester, devoting herself to making sure the creation didn’t sit on a shelf somewhere.
Their collaboration led to InstaAid, an iOS application that enables residents to send custom messages, emergency alerts, and Facetime calls to nurses from anywhere on the grounds of the Dorchester campus.
The app preserves the independence of people contending with debilitating diseases, said Don Fredette, the Boston Home’s adaptive technology specialist.
For many people with multiple sclerosis, he said, fatigue is a major side effect. But on those days when their energy rebounds and they want to spend the day in the garden, residents shouldn’t be hindered by fear they might encounter trouble and go unnoticed, Fredette said. That’s where the new app comes in.
Marva Serotkin, chief executive officer and president of the Boston Home, said that for people living with disabilities, independence and security are the “two very important characteristics that make life worth living.”
“What we’re trying to do here is help people find ability in a sea of disability,” said Alex Burnham, the Boston Home’s rehabilitation program manager. “What can they still do for themselves, and what can we do to maximize that control over their lives? It may be something very small, like using this app, but if that’s the only thing they can do, we want to make sure they can do that whenever they want to.”
As the app was being created, the students met with Marie each week during the fall semester, offering conceptual sketches of what the app would look like. Then, they built upon those designs using feedback from Marie and other residents.
The students spent their weekends coding and fine tuning the interface for both users and nurses.
William Li, one of the instructors of the Massachusetts Institute of Technology’s assistive technologies course, which has run for four years, said the InstaAid project flourished because of the symbiotic relationship between the Boston Home residents and the students.
Ultimately, the class endeavors to have students think about how to use technology to address a human need, and then make the solution fit to where people live, Li said.
“Someone has a problem and you think, ‘You do this gadget and you’re all set,’ ” Fredette said. “But if you’re looking at it without seeing the person in their environment and not seeing the variables that go along with it, you’re not going to address the entire problem.”
Fredette created a customized platform for each user’s wheelchair that reflected the resident’s range of motion and took into account other attachments on the chair. Some prefer the iPad on a mounted tray; for others, Fredette used a 3D printer to fashion a pedestal to hold the device.
The students — Hadley, Laura D’Aquila, and Tanya Talkar — also worked with Burnham to tailor the app to the visual, motor, and cognitive challenges of each resident.
The six options embedded in the app are depicted by six bold icons stretching across the screen. The most urgent requests line the bottom of the screen, so people with limited movement can readily reach them.
Residents can use any part of their body to make contact with the screen in an emergency — using their chin, elbows, or “a toe if the iPad falls on the floor,” Burnham said. And, crucially, it gives voice to those whose ability to speak has been stolen by disease, and provides an option to far more expensive technologies.
“For a lot of these folks, physically and metaphorically, when the disease they had was progressing and they were losing so much, they felt that they weren’t being heard,” Burnham said. “This lets them know there’s always somebody listening.”
Marie said the ability to communicate with staff, no matter where residents are, gives people the feeling that “somebody has your back.”
Last week, the application won a major award from AT&T and New York University’s Connect Ability Challenge, a celebration of the 25th anniversary of the Americans with Disabilities Act.
InstaAid can be downloaded for free on iTunes.
“Margaret, she now gets to go around the home, whenever anyone new comes in, and say, ‘Look at this application I created,’ ” Hadley said. “Oh sure, there were these MIT students and they coded, but really at the base, she made that application. It’s so special to make something that was a dream for her become a reality.”