Winter 2013, Cognitive AT 
AT Program News serves the state Assistive Technology Act Programs, the Alternative Financing Programs, and their community partners
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New Study to Show Personal Digital Assistants (PDAs) Effective as Cognitive Aids for Employment


A sneak peak at Tony Gentry's findings and some exciting implications


Head shot photo of Tony Gentry, Ph.D.Last month Tony Gentry, director of the Assistive Technology for Cognition (ATC) Laboratory at Virginia Commonwealth University (VCU), enrolled the final two participants of a 50-person randomized trial on PDAs as vocational aids for adults with autism. The study is funded by the National Institutes on Disability and Rehabilitation Research (NIDRR), and involves a range of participants with autism (from those who do not speak to those who experience, primarily, social obstacles). Image of a smart phone.  Although the data won't be fully crunched until the spring, the results are already proving significant: "Of the participants in the study," Gentry reports, "all have learned to use these devices, all have continued to use these devices, and all have required less vocational support than they would have without these devices."

Across the country, Vocational Rehabilitation agencies provide supported employment services to persons with intellectual disabilities. Job coaches help persons with cognitive differences learn routines and tasks and problem-solve the social and behavioral challenges that may come up at work. Gentry believes his data will demonstrate that a $200 smartphone or iPod Touch can save hours of these services (often billed at $50/hour). "It won't put any job coaches out of work," he reassures, "because they are already so overworked, but in the future more people could be served, and the supports will be more effective."

VR agencies are sure to take notice of these findings, particularly with devices that require such a relatively small investment. However, the vocational benefits to deploying PDAs with persons with intellectual disabilities may be just the tip of the iceberg for what's possible. Indeed, Gentry has found that for some individuals, using simple strategies with PDAs helps broaden horizons far beyond the workplace.

Riding that tiger

Gentry’s fascination with PDAs dates back to 2000, when he directed a community reintegration program for persons with brain injuries. There he used memory books with clients to help with basic routines for daily living. Memory books--small photo albums showing a sequence of tasks--can be very effective. But at the brain injury program, Gentry says, he often came up against a limitation, "No one would remember to look at them."

The agency, however, was well-resourced. So when a psychologist on staff purchased a Palm Pilot for his own use, it caught Gentry's attention. The Palm Pilot (then about $500) had a reminder-alert feature. "I remember thinking this is what's been missing!"

At Gentry's prodding, the program's medical director eventually purchased five Palm Pilots to trial with clients. One client, a lawyer, took to the slick device right away. “So I asked him what his wife most nagged him to do,” Gentry says, “and then programmed it with audible reminders for those daily routines.” Gentry learned of the success of this strategy at the next staff meeting. “His wife barged in on the meeting (usually not a good sign…) She wanted everyone to know how that PDA had changed her life!"

After this experience, Gentry wrote a grant, and then a dissertation "So I've been riding that tiger ever since." Today as an associate professor of occupational therapy at VCU he tells all his students, “In helping your clients, when you see something that works, grab it!”

Some basic apps and that one nagging question

Gentry says the most difficult aspect to his work at the AT for Cognition Laboratory is the pressure he feels to keep up with quickly evolving technology. Yet he also stresses that the vast majority of his research participants benefit from just a few basic apps, most of which come already built in to their devices. "Everyone in the study has a work folder with the Reminders app, the Clock app, and maybe one or two more, to help them stay on task during the day."

Equally simple is his message for how to deploy a PDA. "We use assessments, etc., but what it comes down to, really, is the question I first used with the lawyer at the brain injury program: what are the things you most get nagged to do? And we build our adaptations from there."

In 2012, The Journal of Vocational Rehabilitation published three case studies that Gentry and his colleagues gleaned from the NIDRR-funded PDA trial [1]. The cases detail how job supports are successfully provided using task lists, audio or video recordings, Clock reminders and other apps. In one example, Jeffrey, a young man with autism, used an iPod Touch to support his janitorial work at a fast food restaurant. His occupational therapist scheduled Clock reminders with different sounds to cue him to review task notes (both audio and visual) and move him through his responsibilities. Jeffrey, we learn, readily adopted the device and used it successfully after just one week into training. He enjoys it, takes care of it, and is apparently so reassured by what it provides him that he no longer exhibits self-calming behaviors stereotypical to autism (such as spinning in place and humming). A year later his manager reported, "[Jeffrey] is methodical, hardworking, thorough, and we’ve even caught him sharing a smile with the line cooks now and then.” All of this is accomplished with the Touch's built-in apps.

In another case study, Grace, a 60-year old woman with autism and mild cerebral palsy, uses her Touch in a similar way at a clerical job. Clock reminders help her to switch or complete tasks, and custom-made videos are her way-finding tool for the workplace maze. But unlike Jeffrey, Grace also uses her Touch to get to work, deploying apps as tools to empower problem-solving for issues that had begun to make her commute dangerous. Her Touch reminds her to go to the bus stop (Clock app) and phone the transportation company if her bus is late (Contacts app). Music and podcasts of favorite radio shows help her to stay calm while waiting, and a custom-made video (Camera app) models what waiting should look like  and how to call her employer if she will be late.

Grace's job coach, Stephanie Lau, trains Grace to use these tools to manage her commute successfully. Particularly helpful is the video--which they made together--featuring Grace waiting safely for the bus. By reviewing the video when she feels anxious, Grace no longer steps off the curb to look for the bus (or leaves her pocketbook on the bench to do so).

Remarkable affordable transformations

In some cases using basic apps deployed in these simple and thoughtful ways has a dramatic and motivating impact on users. "What I really love," Gentry says, " is how when people are in control of remembering to do things--managing their tasks, not having to get nagged all the time by a supervisor, job coach or a parent--there's a self-efficacy piece that kicks in. It's true for any AT, but it's especially wonderful to see with a device that is so inexpensive and readily adapted to people’s needs."

Indeed, the media has paid generous attention to the benefits of the iPad and iPod Touch for some individuals with autism. But this attention has focused on apps for augmentative and alternative communication (AAC), and the iPad as an academic and social skills learning tool. Outside of communication, little notice has been paid to the potential consumer technology has for helping adults with intellectual disabilities or autism achieve new levels of self-agency (perhaps because that story has yet to break). Gentry, however, has witnessed some remarkable transformations.

His favorite example is not actually about a study participant, but a woman he met early during the course of the project. "Ann," age 32, has autism and an obsessive compulsive disorder. Gentry is introduced to Ann at a group home by the home's manager. The manager knows Ann is not ready for employment, but hopes Gentry can help her anyway; after all, she already has an iPhone, which she uses to check the weather and repeatedly call her mother. Indeed, when Gentry speaks to Ann, he learns she talks to her mother for upwards of five hours each day, calling to ask for guidance on what to do next. It was a situation that was draining to them both.

Gentry says his goal became, "How can I keep Ann from calling Atlanta?" His answer is to make video recordings with iPhone’s built-in Camera app. Instead of calling her mother for reassurances, Ann could learn to make and play videos of her mother talking to her about key issues that bother her during the day.

Ann took to the strategy right away, relying on the videos for guidance, instead of phoning her mother. Eventually Ann began making recordings of herself, providing the inspirational self-talk she knew she'd want in insecure moments. And finally her need for recordings faded altogether. "She learned to self-talk," Gentry reflects, "which is what we all do, really. She internalized the messages."

For Ann's mother the experience was so life-altering that she came up from Atlanta to visit Gentry in his office. "She talked for a half an hour about all the thousands of dollars they'd spent trying to help her daughter and how nothing had helped like the iPhone videos. She wanted as many people to know as possible."

For Ann, the experience was like moving through a portal to a new life and new self-understanding.

"It was like a test case in the power of self-efficacy," Gentry emphasizes. "Once she regained all those hours she had spent on the phone, she began asking herself, what else can I do? What do I want?" Ann has since moved out of the group home and today lives on her own. She is learning community living skills with an occupational therapist and uses her iPhone to meet each new challenge. “She uses videos for finding her way from her home to the grocery store. She uses apps for grocery shopping, apps for how to interact with others, apps to help remember people’s names and things. Watching her evolve has been amazing. We learned a lot from Ann about how these tools can help."

Of course there are many apps on the market for behavioral management and reducing anxiety. But a key lesson Ann taught Gentry is that when it comes to receiving instruction or reassurances, often nothing works as well as the voice and/or face of a loved one (or at least that of your own therapist), and personalized video clips make that possible on PDAs. It's a lesson the AT Lab later applied for the benefit of Jeffrey and Grace and many, many others. (Needless to say, Ann's mother is thrilled). 

The emerging landscape: every day AT, everywhere, for everybody

During the five-year period of this study there have been some dramatic changes to the technology landscape and cultural shifts as well. Gentry's funding began in 2008, a year after the release of the first iPod Touch, a year before the first iPhone, and during a time when many service providers still wondered if adults with autism were even capable of learning to use or care for PDAs. Now, as the study is wrapping up, the consumer mobile tech revolution is in full swing, and autism awareness has broadened and deepened most professionals' understanding of the autism spectrum and community. But back in 2008, it's likely few would have predicted Gentry's dramatic outcomes for vocation, never mind a story like Ann's.

Today smartphones are becoming ubiquitous. And for AT adoption, this development may be just as powerful as the original Apple "cool-factor." Mobile tech devices are not only what everyone wants (dissolving the stigma of AT), they are also what everyone has. "Handheld devices are becoming a part of the everyday landscape, like a pair of glasses," Gentry observes, "and because rehabilitation professionals now have smartphones themselves, teaching them to use them with individuals is very easy." They are happy to install apps, and they know how to do it. "It wasn't like that three years ago," Gentry chuckles, "but it is now!"

Learn more from Tony Gentry about video modeling and other AT at this VCU Autism Center for Excellence (ACE) Web page.
____________________
1. Gentry, Tony; Lau, Stephanie; Molinelli, Alissa; Fallen, Amy; Kriner, Richard. “The Apple iPod Touch as a vocational support aid for adults with autism: Three case studies.” Journal of Vocational Rehabilitation 37 (2012): 75–85. Print.


Strategies for Video Modeling Using iPods and iPads


Need help with wayfinding, social cueing, task sequencing, and/or behavioral prompting? Check out this eleven minute video at VCU's Autism Center for Excellence Web site by Tony Gentry (opens in a new window)!

Video player image with a slide that showing hands using a tablet computer. Slide text: Smart Technology. Handheld devices for cognitive behavioral challenges in Autism. Tony Gentry PhD OTR/L, Department of Occupational Therapy & Autism Center of Excellence, Virginia Commonwealth University


8 Great Apps for Daily Living


1. Picture Scheduler
Reminds users of tasks with images and alarms, and can automatically open linked videos (or audio files). No need to switch between apps to cue routines. Five alarm sounds to choose from (so different tasks can be tagged with specific sounds). iPod Touch/iPhone/iPad compatible. $2.99

2. iDress for Weather
Provides images of clothing and weather conditions daily. Can be customized with user's own clothing photos or other images. iPhone/iPad $1.99

3. iCounselor: OCD
Helps users with obsessive compulsive disorder (OCD) based on exposure and response prevention, an evidence-based treatment method. iPod Touch/iPhone/iPad $0.99

4. The Photo Cookbook--Quick & Easy
Every recipe starts with a photograph of ingredients in their measured portions. Each step is illustrated clearly and simply. $4.99 iPad/iPod Touch/iPhone

5. Shopping List Generator
Create pictorial shopping lists with custom photos. Categorize items, assign prices and aisle locations. Includes text-to-speech and large easy-to-see images. Prices are automatically totaled. $4.99 iPod Touch/iPhone/iPad

6. Everyday Skills
Provides self-­directed learning sessions for 40 important skills. Topic areas include community skills, personal skills, and transition and transportation skills. $19.99 iPhone/iPod Touch/iPad

7. MyMedSchedule
Available for iPhone or Android or as a web-based application, MyMedSchedule sends reminders to take medication (by text or email), and helps keep track of medications and refills. Free.

8. Sleep Cycle alarm clock
Put your iPhone, iPad or iPod Touch under your pillow and this app will analyze your movement during sleep and find the optimal time to wake you during a 30 minute window (that ends at your set alarm time). Tracks sleep quality and rhythms using the accelerometer in your device. Requires iOS 4.3 or later.

Thanks to OCALI and VCU ACE for app recommendations!


Memory Books and Other Graphic Cuing Systems, 
by Michelle Bourgeois, Ph.D., CCC-SLP


Reviewed by Randi Sargent


Book cover of Memory Books and Other Graphic Cuing Systems; practical communication and memory aids for adults with dementia, by Michelle S. Bourgeois

There's growing interest in technology-based solutions for enhancing cognitive skills for adults--especially adults with early dementia and memory loss. But not all adults will have the ability and/or interest to learn to use the new software. Fortunately there are several low-tech strategies and tools that can be used effectively to prompt memory, communication, and engagement. If you are looking for simple and affordable ideas, Memory Books and Other Graphic Cuing Systems: Practical Communication and Memory Aids for Adults with Dementia, by Michelle Bourgeois, Ph.D., CCC-SLP, is a great place to start. Published in 2007, it predates the mobile app revolution.
 
Professor Bourgeois is a well-published speech pathologist and researcher who specializes in cognitive remediation and gerontology. Her research was funded by the Alzheimer's Association and the National Institute on Aging, and the guide offers research-based practical solutions. Written for SLPs, OTs, PTs, recreation directors, direct caregivers, and family members, the guide covers how to make and use low-tech assistive technology (aka "memory prosthesis") to reduce confusion, anxiety, and frustration. Eight chapters discuss research, using memory aids to enhance conversation and orientation, aids to increase engagement and activity, and aids for managing difficult behaviors. The book concludes with chapters about aids appropriate for use in adult day programs, assisted living, nursing facilities, and family environments.
 
Bourgeois includes a wealth of pictures and suggested written cues. She also provides detailed instructions (and assessment guidance) for making visual aids such as memory books, reminder cards, reproducible conversation booklets, and portable/wearable holders for ambulatory and non-ambulatory adults. But perhaps most importantly, Bourgeois provides guidance on how to use these aids to engage and communicate with non-verbal and memory-impaired persons. For example, she describes how to use visual schedules with steps for showering so that individuals can understand what's expected and be more likely to comply and participate.
 
While this book is easy to read and provides great instruction on practical tools caregivers can create, making customized aids can be time-consuming. Unfortunately she provides little mention of available products that can save caregivers time in making these aids. However, I liked her idea of encouraging volunteers and family members to help create these books, and to engage with their clients and loved ones in the process.
 
Memory Books and Other Graphic Cuing Systems: Practical Communication and Memory Aids for Adults with Dementia, by Michelle S. Bourgeois, Ph.D, CCC-SLP, Health Professions Press, 2007, soft cover 128 pages. $29.95. 
 
Randi Sargent is a parent of a teen with multiple disabilities who uses both low and high-tech AT throughout his day for communication, mobility, and learning. She is the founder of the Web resource: Say it with SymbolsContact Randi.


The StepPad: Mid-Tech AT for Task Sequences

 

Memory books and apps don't work for everybody. Another cognitive tool for multi-step tasks is the StepPad.
 

Photo of the StepPad with buttons and speakersThe StepPad, from the Attainment company,  has four activity buttons to activate step-by-step sequences. Users hear steps one at a time by pressing the Next button, the Play button to repeat a step, and the Back button to retreat a step. Activity buttons may be labeled with images and an auditory cue.
Photo of a man holding a StepPad.
StepPad provides:
  • capacity for 8 activities
  • up to 29 steps per activity
  • quick access to core messages
  • a headphone jack
  • shared recording memory
  • record, level, and activity lock
  • built in lanyard loops and belt loop slot. 
Requires two AAA batteries.
Size: 6.5" x 2" X .5" 
Weight: 5.3 oz.
$99.00 at this Attainment Company Web page.

Reminder: AT Program News makes no endorsement, representation, or warranty expressed or implied for any product, device, or information set forth in this newsletter or on its Web site. AT Program News has not examined, reviewed, or tested any product or device referred to in this newsletter or at www.atprogramnews.com.


Can Hearing Aids Help Prevent Dementia?


20-year study finds even mild hearing loss may double the risk for dementia


During a recent webinar on Assistive Listening Devices for Deaf and Hard of Hearing Populations, Valerie Stafford-Mallis referenced a study that links hearing loss to dementia. The study, conducted by researchers from Johns Hopkins and the National Institute on Aging, followed 639 subjects aged 36 to 90 for nearly 20 years (testing the hearing of participants every two years). [1]

According to Stafford-Mallis, the study found that the risk of dementia rises once hearing loss affects the ability to communicate, but that even mild hearing loss correlates with a doubled risk. She notes this gives new urgency to addressing hearing loss through assistive listening devices (and that the issue is different for individuals born deaf). You can access the recorded webinar, view the powerpoint, and find a transcript at this Catalyst Project Web page.

1. Lin, Frank R.; Metter, E. Jeffrey;  O’Brien, Richard J.; Resnick, Susan M; Zonderman, Alan B.; Ferrucci, Luigi. "Hearing Loss and Incident Dementia." Archives of Neurology 68(2) 2011: 214-220. Print



Save the Date:
The M-Enabling Summit is June 6th and 7th in 2013!

Graphic of a calendar with a clock face.
M-Enabling brings together policy makers, mobile service providers, apps developers, manufactures, and disability organizations. At the Summit they share their experiences leveraging the latest mobile operating systems, handset and tablet technologies toward creating life-changing applications and services for seniors and users of all abilities. The summit is organized by E.J. Krause and Associates, Inc. and the G3ict (a UN initiative), in cooperation with the International Telecommunication Union (ITC), and the Federal Communications Commission (FCC).
 
Held in Washington D.C. this June, M-Enabling is expected to draw more than 600 participants from at least 40 countries. Last year the Summit was live-streamed for remote access. Stay tuned for options and learn more at the M-Enabling Web site.
Copyright © 2013 AT Program News, All rights reserved.
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