For many, “prosthetics” means wheelchairs and hearing aids. Adults with cognitive disabilities are pioneering a new paradigm for assistive technology.
Brian Villani, 26, tall and in khakis, extroverted, both opinionated and earnest, shares a garden-level apartment with two roommates in greater Boston that’s outfitted with the material culture of young adulthood: big overstuffed couch, multiple gaming systems, oversize posters, a clutter of plastic kitchenware. He commutes by train to a job he’s held for years at a corporate mail room downtown, a job he loves—“I pick up all the packages, and all my vendors know me,” he says. He lives close—“but not too close,” he says wryly—to his parents and has an abiding passion for sports, especially the art of play-by-play announcing. He is counting down the days to his brother’s wedding.
Villani moves through life, home to work and back again, with an extended set of technologies that are a mix of the familiar and distinctive. There’s a touchscreen tablet on his kitchen wall that operates the microwave by voice command, and a sensor-augmented trash can that opens with just a hand or limb’s hover. His window blinds automatically open and close to greet and mute the sun, morning and evening, via phone app. His shower is activated by touchscreen interface, both on/off and temperature control, simplifying the combined motor-cognitive task. He uses a smart speaker for music and internet searches, as in many households, but Villani also has a voice-activated script on a tablet, cued when he says “Good morning,” or “Good night,” to bookend his day with digitally voiced reminders big and small: news headlines, upcoming calendar events, and a daily prompt to take his office badge with him when he walks out the door. It’s a morning routine that knits together all the steps that lead from home to office.
Like his roommates, Villani is a graduate of nearby Lesley University in Cambridge, where he attended the Threshold Program, a hybrid two-year college curriculum for young adults with developmental and cognitive disabilities, mixing coursework with life skills training: budgeting, time management, meal planning. Now that he’s living with less human assistance, he’s taken up this set of smart home tools and software applications as follow-on supports for the daily living tasks he rehearsed in school.
“Technology is how I get the most independent skills possible,” Villani says, and he’s expressing an idea that’s rapidly changing the paradigm for prosthetics and “assistive” technologies in the United States—what counts as technology, how it’s used and by whom, but also how it’s paid for and distributed.
Many people think of prosthetics and assistive tech, or AT, in a relatively narrow paradigm, imagining familiar objects like wheelchairs, walkers, and hearing aids. For decades, US state disability services have indeed been shaped by this clinical understanding, offering coverage for what’s formally called Durable Medical Equipment because of its “medically necessary” designation. These medical technologies remain important, of course. But they often fail to address the needs for assistance among adults like Brian.
Until recently, people with developmental or cognitive disabilities (or combined physical-cognitive barriers to access) have relied heavily on human services for support, anything from cooking and personal hygiene to organizing and reminders. Sometimes this human presence is desirable and necessary. But sometimes self-advocates—perhaps especially a new generation of people who’ve enjoyed greater mainstream inclusion in schools—prefer a technology-led approach, with remote check-ins and easy backup contacts, rather than a rotating staff of in-person assistants.
Prosthetics for this population isn’t so much about replacement parts for physical mobility. It’s something less tangible, more diffuse, and requires a distinct paradigm for assistance, unimaginable even in the very recent era of the Americans with Disabilities Act, with its emphasis on crucial physical infrastructure like ramps and elevators. For people like Chris, assistance now shows up as a mix of independent housing, animal companionship, smart home technologies, and remote-support videoconferencing. It’s a constellation of high-tech and low-tech in distributed, networked tools, many of which are ready to hand, seamlessly integrated as ubiquitous features of everyday life, which can bridge some of the logistical barriers to employment.
And a constellation of technology is indeed the proper metaphor. There’s no one way to dominate this market—no single system that will outfit a living space or workplace with “universal” features for accessibility. There won’t be a single “curb-cut effect” for this digital world. What’s required instead is a human-centered approach to assembling a suite of human services and tools that are flexible, elegantly orchestrated to meet the needs and requests of one person at a time. More importantly, this future for automation doesn’t have to be a wholesale and worrisome replacement for human care and connection. What’s coming could be more interesting and complex altogether: a new and evolving collaboration between humans and assistive devices, low-tech and high-tech, domestic and professional. If orchestrated with care, this expanded idea of AT can help create supports not only for medical needs but for a full definition of life: life attended by critical everyday assistance, but without warehousing people with “special needs.”
Naturally, remote assistance can be challenging to some families and caregivers for these adults, who worry about safety and security. But “we owe people the dignity of risk,” says Holly Reiff, an assistive provider relations specialist with the state of Missouri’s Department of Mental Health. “We need a culture shift, not just in the field but in the entire social system. We need to value every single person and look at their abilities.”
A new set of policies—a mix of federal partnerships and state-level initiatives—known as Technology Forward, or sometimes Technology First, or broadly “enabling technology” or “supportive technology,” are meant to enact this shifting paradigm for prosthetics. The programs are rolling out in Missouri, Tennessee, Ohio, and Massachusetts, followed closely by many other states, where long-standing efforts to create strong housing and workforce development assistance for adults with developmental disabilities are now expanding their funding for testing out, purchasing, and training support for a much wider collection of product-scale gear.
The task force in Massachusetts started out with focused interviews, documenting the needs and wishes of adults with cognitive disabilities and citing those stories in building a case for a big investment in tech. The report tells the story of Norma, whose model of support services initially included overnight stays by a personal care assistant. Norma wanted more privacy and fewer strangers in her home; she insisted she was ready for remote support for overnight care. After a safety drill with the local fire department determined that her residence could be reached in 90 seconds in an emergency, Norma switched to a technology-led security model: using a video camera to see who’s knocking at her door, and digitally connecting overnight to an on-call service with a local support provider. It also tells the story of Jack, who has drop-in visits from staff three times a week and videoconferencing support via avatar for additional, on-the-fly support needs—anything from picking out appropriate clothing to questions about using his coffee maker. There are stories of refrigerators outfitted with compartments that make medications accessible at specific times of day, tablets outfitted with apps that create custom voiced messages for workplace interactions, even very simple phone-based apps that create easy and visual task lists, for home or work. The supports might be big or small, and the possible assemblages of hardware and software are endless—and they’ll be authentically supportive when backed by a safety net of human care.
Technology Forward efforts are expanding coverage not only for the tech itself, but also for the advising support for its adoption and use. In Massachusetts, the Tech Forward task force research led to new jobs, like for Jeff Boucher, who is an assistive technology coordinator at the Northeast ARC in Danvers, Massachusetts. Boucher hosts a lending library and makeshift “show room” for adults with disabilities and their families or caregivers, who drop in and test out the gear that might be useful in their own settings. They can borrow tools from the ARC’s lending library for 30 days, to see if a device’s usefulness really will outlast any easy enthusiasm for novel gadgets. Boucher got his start in special education, where a lightbulb AT moment arrived not in the slick speed of software, but with an old analog film canister. When working with an occupational therapist and a client who had trouble steadying both a toothbrush and toothpaste tube together, Boucher observed a very simple and appropriate solution: The client could squeeze toothpaste into the film canister and then dip the toothbrush into the paste. Simple hacking—finding the right object at just the right time—is the disposition he brings to finding client matches for any of the possible tools he has on hand.
On a visit to the lending library, Boucher might demo some tablet-based scripts that can be set up for personalized reminders or task sequences, like the one Brian Villani has at home. Or perhaps a cooking timer that integrates with a stovetop, turning off the heat if a pan is left too long. He might introduce clients to an app for the smartphone they already have. Smart home tech and IoT products assist adults with all kinds of bodies, of course—those with and without disabilities. And no one approach will work for everyone. It takes an inventive, flexible disposition to link together what any particular human needs and wants—how much assistance, in what forms, and with which kinds of human support alongside them. It’s not blunt-force automation, but instead a creative alloy of aggregation and partnership that turns them into a distinctive set of next-generation assistive technologies.
“Assistive technology can be almost anything,” says Jennifer Petersen, who directs the Supportive Technology program in Massachusetts’s Department of Developmental Services. “It’s whatever helps an individual maintain or improve their abilities, to help them achieve whatever they’re trying to achieve.” Petersen helps coordinate teams of assistive technology professionals in both federal and state partnerships to consult with individuals to support home and work tasks, and also social and leisure activities. They do plenty of collaborative design for adaptive gaming, for instance. Gaming can be a form of social connection that starts online and can morph into in-person connection. Petersen said this form of access was crucial in the pandemic especially, and that her own adult son, an avid gamer, made a handful of new friends that he regularly sees in person now.
Under Technology First initiatives, adults with disabilities (whose benefits would have been restricted to the old model of “Durable Medical Equipment”) can now be reimbursed for this expanded paradigm of everyday technology—up to nearly $10,000 a year in some states. In each state, qualifying adults receive waivers that cover these costs; with rapidly evolving smart-home technologies coming to market all the time, those waivers have been amended every few years to better match people’s needs with supportive tools. If Tech First initiatives become widespread, these adaptations might mitigate what special educators and human service providers often call “the cliff”: a dramatic drop-off of services that arrives for many people at age 22. Whereas in school, technologies of all kinds are covered by Individualized Education Plans, the landscape of adulthood has been under-imagined when it comes to inclusion.
For adults with cognitive and developmental disabilities, the last hundred years in housing has paradigmatically shifted from large institutional residences to human-staffed group housing (or “congregate care”)—and plenty of adults who live long-term with their families—and now, bit by bit, to possibilities for more independent living, where desired. It’s an idea that would have been unthinkable even half a century ago.
But “independent” living is a big idea, not restricted to a literal arrangement of life in a dwelling alone. Think of it in the spirit of the Independent Living Movement, or ILM, which claimed a creative, open framework for thinking about the real meaning of independence. Initiated by a cohort of disabled students in the late 1960s and ’70s around UC Berkeley, these adults learned to take charge of their daily needs for personal care. After their time on campus, they opened the first Center for Independent Living in the city of Berkeley. There are now Centers for Independent Living in all 50 states.
Longtime disability activist Judy Heumann famously said of the ILM that its aims were to see disabled people taking up a project of “self-determination,” which is distinct from “self-sufficiency.” To be an agent in determining one’s own life is to be the protagonist—the one with agency and authentic choices about living arrangements, and about the sources and forms of help one gives and receives. As Heumann argued, completing tasks alone is not a robust definition of independence.
In a similar spirit, technology is never a capital-A answer on its own, but a semi-automated future that might stitch together some of the practical barriers to inclusive workplaces and recreation. It takes dozens of steps and decisions—cognitive tasks and physical tasks—to get out the door and to a job on any given day. Assistance, then, whether human or technological, is natural and should be designed into all our lives, in whatever variation makes sense. Technology Forward efforts, if carefully supported in a larger ecosystem of well-being, might continue this tradition.
Tech Forward’s expanded model of AT tracks alongside changing ideas about independent living, but also changes in employment for cognitively disabled adults. For much of the last half century, work for this population has been dominated by “sheltered workshops,” where employees have legally worked for subminimum wages in private settings—secure, but also out of the public eye. The Workforce Innovation and Opportunity Act has changed the mandates for inclusive employment, getting a new generation to work fully immersed in their communities. Inclusion of this kind is a generally positive and welcome development. But the mechanics will matter. Strong employment in the mainstream workplace will require creative commitments and strategies, in both employer relationships and in technologies for support.
On a Friday afternoon, Olivia Gaffney has an appointment with her job coach via videoconference. She’s at home, planning her grocery list and looking at the week ahead: a mix of social and family time, plus morning and evening shifts in her job at a hospital kitchen, building trays of food for patients with complex medical needs. The meeting is a remote check-in with Jeff Gentry, director of disability services at Jewish Vocational Service in Boston and longtime job coach for adults with developmental and cognitive disabilities. Gentry visited Gaffney on-site when she started at the hospital to assist in her onboarding, and he now talks with her on an as-needed basis—a couple of times a month to provide lightweight support for workplace problem-solving, connected via tech. They talk about the usual job management topics: coworker relationships, scheduling decisions. Gentry mostly asks questions, like all good coaches, letting Gaffney talk herself through what’s on her mind. “Jeff helps me come up with strategies,” she says, and today that included delicate matters like when to exchange phone numbers with a colleague who might also become a friend.
Like Brian Villani, Gaffney is a graduate of Lesley’s Threshold Program. She lives in her own apartment and takes a rideshare service via phone app to her job in an industrial kitchen in Boston. She’s set to take a transportation training next month to expand her options for getting around town. On a break, she might check in with Gentry via text, sending a snapshot of her calendar, and then get back to work. It’s the most everyday but crucial form of AT: the smart phone, what so many of us use as a second brain to augment daily tasks. But for Gaffney, it’s a lightweight way to store her calendar, call for a ride, consult on the fly. It’s above all a form of accompaniment: an augmentation that gives her spotting and just-in-time connections.
Gentry thinks the metaphor of “the cliff” in adulthood for people like Olivia is unhelpful, even detrimental to building authentic and meaningful inclusion—which is a task that necessarily demands strong partnerships among disabled self-advocates, family and friend networks, employers, government agencies, human services, and tech companies. “We need a grammar of possibility,” he says, “words that are carefully sequenced to create early employment, active citizenship, and a life of resilience.”
Decades of disability activist work, both in politics and in culture, has already dramatically expanded the meaning of life with disability. Once an exclusively medical designation, there is now a robust idea of disability as a dimensional human experience, attended by strong claims for civil rights and a shared stake in human thriving, with joy and heartbreak, relationships and leisure, variable interests in work and play.
Assistance can help. Assistance is and will always be necessary. The question is whether its sources, technological and social, might multiply, expand, and more richly augment life in this most creative fashion. Gentry calls for strong expectations among everyone in the networks of people with developmental disabilities—expectations that the structures of the world can be made more flexible than their long weight of history, and expectations that the medicalized, diagnostic labeling that has routinely marginalized people with cognitive disabilities might be supplanted with a more human and humane idea of personhood.
Written by Sara Hendren. A humanist in tech: a design researcher, professor at Olin College of Engineering, and the author of What Can A Body Do? How We Meet the Built World (Riverhead 2020). Her newsletter is undefended / undefeated.
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