In This Edition:
- Goldilocks and the Three Apps
- MassMATCH Reaches the North Shore and Cape Ann
- The Weight and Seating Independence Project is Statewide!
- AT for Living with Aphasia
- Register Now for the Assistive Technology (AT) Makers’ Fair!
- Join MassMATCH at Abilities Expo Boston! September 21st-23rd
- More Upcoming Events (opens the MassMATCH Events page)
Goldilocks and the Three Apps
Not all assistive technology (AT) success stories follow the simple fairy tale …
| Kristi Peak-Oliveira demonstrates a communication app at the MassMATCH AT Regional Center in Boston |
When Kristi Peak-Oliveira, MA, CCC-SLP, first met “Robert,” he was 77 and had been living with aphasia for over a year. Aphasia is a communication disorder, and Robert could no longer say more than a single phrase. “I would like… I would like…,” he repeated again and again when Kristi first met with him about technology. Robert had acquired aphasia following his second stroke in April 2016. Kristi had been referred to him for an evaluation for augmentative and alternative communication (AAC).
As a speech-language pathologist in the Assistive Technology (AT) department at Easter Seals in Boston, Kristi works regularly with individuals of all ages who have complex communication needs. She conducts AAC evaluations and determines, with her clients’ input, whether a speech-generating device (SGD) could improve their functional communication. She helps set them up with appropriate AAC technology and provides training on how to use it. Sometimes that process follows a clear sequence of steps and decisions. Sometimes it doesn’t.
At the AT Regional Center in Boston, Kristi borrows equipment to trial with her clients. The Center is part of MassMATCH and is operated by Easter Seals, where Kristi works. As a former coordinator of the Center, Kristi is well-versed in the SGDs available for trial for up to four weeks at a time. The device loan program is a valuable resource for all kinds of assistive technology—but perhaps especially for speech devices. Finding the right SGD is always highly technical, but it’s also often a deeply personal and emotional decision for the user.
Kristi suspected Robert’s case would bring those challenges.
Speech Devices Are Complicated
Robert, she’d been told, was living in an assisted living facility south of Boston, and he was deeply unhappy there. Kristi’s task was to get him communicating with an SGD that would work for him. The goal, as with all assistive technology, was to improve his quality of life. He already had a speech-generating device that he didn’t like and wasn’t using.
This is highly specialized work. Speech devices can include complex apps on iPads and other tablets, as well as dedicated devices built solely for communication. All of them allow users to create and send messages with voice output. Messages can be constructed using text, symbols, or pre-recorded audio, and some users combine these methods. Individual needs, skills, and preferences vary widely.
Adding to the complexity of Robert’s situation, Kristi explains, was the fact that he had few communication partners and a strong personality. At his assisted living facility, there wasn’t anyone he wanted to talk to, and he had no family members actively involved in his life. From what Kristi could observe, he was isolated and often frustrated.
Aphasia Is Frustrating
Robert may have always been set in his ways, but aphasia is an intensely frustrating condition. It’s a language processing disorder that affects people differently. Symptoms can include difficulty with word recall and speech, understanding spoken language, or reading and writing. In Robert’s case, Kristi’s assessment showed that he understood quite well, but he couldn’t read or write, and at most, he could speak three words. Like many people living with aphasia, Robert’s intellect was unaffected. He had every reason to be frustrated.
The SGD Robert had was a TouchTalk, which had been purchased through insurance while he was in rehab. The device is specifically designed for individuals with aphasia, but Robert would just gesture toward it dismissively.
Unfortunately, Kristi had no way of knowing what it was about the TouchTalk that Robert disliked. He wouldn’t answer her yes-or-no questions about the device. He just repeated, “I would like…,” and the conversation could go no further.
Goldilocks and the Three Apps
Robert was receiving Kristi’s services under Massachusetts’s Medicaid Waiver program for Acquired Brain Injury. The Waiver Program readily approves iPad-based AAC solutions because they are relatively affordable. So Kristi began introducing Robert to the AAC apps she’d seen clients with aphasia use routinely with success. These include Proloquo2Go, TouchChat, and Compass (see AT for Living with Aphasia below).
Proloquo2Go is a robust AAC app made by AssistiveWare that uses symbols to build messages (among many other features). Robert, however, would have nothing to do with it. He shook his head and gestured disdainfully toward the whole system.
TouchChat is built for customizing and offers an aphasia-user profile. It includes maps and the capacity to upload photos to link with messages. But, again, Robert scowled and waived it away.
Kristi realized both TouchChat and Proloquo2Go use SymbolStix and he may not have liked those stick-figure icons. He preferred more of an adult feel, she concluded. (Learn more about symbol sets for SGDs.)
Compass, from Tobii Dynavox, uses a different symbol set (ACS) and is complex and powerful. It has built-in whiteboards and rating scales for communicating preferences. Vocabulary is presented using visual scene displays providing context for programmed messages. Scripts organize sentences by topic that can be selected one at a time for voice output. Like TouchChat, the app includes a Stroke and Brain Injury profile. Robert lit up when he saw the script for explaining aphasia.
Now he could explain his condition.
Communication Requires Partnership
Kristi worked with Robert, along with Tracy, a staff member at his day program who became an invaluable ally as he explored device and vocabulary preferences. Tracy is not a speech-language pathologist; she is entirely self-taught. But as Robert’s main communication partner, she played a critical role in his progress.
“None of this would have been possible without Tracy,” Kristi says.
Tracy was highly motivated, as was Robert’s Waiver Program coordinator, to help him succeed with AAC. An SLP at the day program was also a vital part of the team. Together, they were committed to figuring out what Robert needed.
Over many days and weeks, Tracy sat with Robert, asking yes/no questions and using photos he kept in a box to prompt communication. One photo—Robert cycling—immediately lit him up. The bike, clearly, was meaningful. Robert still rode.
Aphasia Would Not Define Him
As time went on, they learned more about Robert. He had flown planes. He was a runner. When asked about marathons, he nodded enthusiastically.
Boston?
Yes, he answered. Then he counted on his fingers. He had run the Boston Marathon ten times.
During one visit, while Kristi and Tracy chatted during a break, they discovered a shared interest in alternative medicine. Tracy is a Reiki master. Kristi is vegan. When Robert suddenly became animated, they found out he was also vegan—and that he meditated. Soon, he wanted scripts on all of these topics.
Aphasia would not define him.
Each new discovery felt like a small win for Robert and his team. Everyone genuinely enjoyed him, and now they knew him better. After reviewing the Compass app with him and seeing his enthusiasm, Kristi recommended that the Waiver Program purchase it. She felt confident he had found what he wanted.
That should have been the end of the story. But it wasn’t.
Apps Aren’t Perfect
After setting up a new iPad with his vocabulary and photos using Compass, Kristi delivered it to Robert at the day program. Two weeks later, she returned to find him frustrated. He wanted structural changes the app wasn’t designed to handle. He only wanted scripts—nothing else on the display.
Kristi and Tracy began tearing their hair out trying to reconfigure Compass. The app allows for customization, but not the fundamental overhaul Robert was asking for. “The idea behind Compass is that it’s loaded with features and vocabulary, and you shouldn’t have to alter it that much to make it work,” Kristi explains.
Robert didn’t see it that way.
Kristi started questioning her original evaluation and regretted the limited time frame she had to work with adult clients. She’d seen that Robert did best with scripts. Had she underestimated his difficulty navigating the app? With categories? His subset testing had looked strong…
She shared her concerns with Robert’s team and said she was ready to start over. The Waiver Coordinator agreed to support a new app purchase if needed, and Kristi proposed trying TouchChat—an app Robert had initially dismissed—using only scripts built around his favorite topics.
Robert made himself clear: he was willing to try it.
Kristi borrowed an iPad preloaded with TouchChat from the AT Regional Center in Boston. She created pages on each topic, with sentences available for selection. She reviewed it with Robert at the day program, left it with him, and returned two weeks later.
Robert shoved the iPad toward her.
“I had no idea why he didn’t like it,” Kristi says. “So I said, ‘OK, we’ve looked at so many different things. What would you like to do now?’”
Robert held up the iPad with Compass and nodded. He wanted to go back to what Kristi had originally recommended.
So, at the end of April 2018, Kristi and Tracy went back to Compass. They couldn’t completely strip it down, but they reduced the number of buttons on each topic page to just a few simple sentences. They customized each button with content that was meaningful and useful to Robert. Two weeks later, when Kristi returned, she saw a different person.
“He was using it. He was in a rhythm. He was even using it at his assisted living facility, which was huge.”
Did she think he just needed time to accept compromise?
“I have no idea,” she says.
Today, Robert no longer lives at the assisted living facility. He has moved to a group home in a rural area where he can walk and ride his bike. Using his Compass app, he was able to tell his Waiver Coordinator how important it was for him to get out of the city.
Robert, it seems, fully intends to keep enjoying everything he loves—and to talk about it too.
Photo credit: Pixabay
MassMATCH Reaches the North Shore and Cape Ann
The MassMATCH Assistive Technology Regional Center in Boston is delighted to announce an easier way to borrow and try out assistive technology (AT) if you live within driving distance of Salem.
The Independent Living Center of the North Shore and Cape Ann (ILCNSCA) is now a drop-off and pick-up site for the Short-term Device Loan program. This means that anyone who would like to borrow an item of AT from the Short-term Device Loan Program inventory may arrange pick up and/or drop-off at 27 Congress Street, Suite 107, in Salem. A drive to Boston is no longer necessary.
MassMATCH loans AT ranging from amplified telephones and medication dispensers to iPads and telepresence robots. Persons with disabilities, family members, therapists, educators and other lay people and professionals may borrow an available item for 4 weeks at a time for no charge to try out at home, work, school or anywhere they need it.
Since 2007, the device inventory has been browseable online with equipment available from the AT Regional Centers (ATRCs) located in Boston or Pittsfield. Last year MassMATCH opened a new AT Regional Center in Worcester to serve Central Mass.
Now the Centers are exploring the access-site model to further improve statewide reach.
“This is part of our effort to get the Device Loan inventory to the more remote reaches of our service area,” explains Eric Oddleifson, Director of AT and Employment Services at Easter Seals which operates the Boston ATRC. “We expect it is just the beginning of these types of community-based partnerships and that it will help us get the word out about the Device Loan program and assist more communities to use it.”
Lisa Orgettas, ILCNSCA Executive Director, is delighted to partner. “We have a display case in our lobby that we will be using to showcase some of the devices and help cue the imagination. Serving as an access site is a great opportunity for members of our community and also for our staff to get to know more assistive technology. In terms of access, this is a whole new ball game.”
| Deborah Barber, ILCNSCA Community Information Specialist with the Center’s new AT display. Deborah is coordinating the access-site initiative with the Boston AT Regional Center |
ILCNSCA also recently came on board as a donation drop-off site for REquipment, the MassMATCH Durable Medical Equipment Reuse Program. Thank you ILCNSCA for all the ways you are supporting AT access with MassMATCH!
| ILCNSCA staff with Karen Langley, REquipment, Inc CEO. |
The Weight and Seating Independence Project is NOW Statewide!
MassMATCH has expanded the Weight and Seating Independence Project (WSIP) to eastern Massachusetts. The project was originally funded with a grant from the Christopher and Dana Reeves Foundation to serve Western and Central Massachusetts (as under served communities). Additional support from the Massachusetts Rehabilitation Commission is now making WSIP equipment available from the AT Regional Center in Boston, as well.
The Weight and Seating Independence Project provides access to scales and pressure mapping systems for wheelchair users. Roll-on scales are available at Independent Living Centers in Central and Western Massachusetts and portable scales are available to borrow for home use (of different varieties). Pressure mapping systems may be borrowed to help gauge appropriate seating and positioning for the prevention of pressure injury.
MRC is also providing new WSIP equipment to the device inventories of the AT Regional Centers in Pittsfield and Worcester. In the coming weeks, portable scales available for borrowing will include Liko Hoyer sling lifts with scale attachments and pressure mapping technology will include BodiTrack systems (in addition to Blue Chip Medical’s MeasureX).
| BodiTrack pressure mapping system |
Stay tuned for training opportunities with pressure mapping focused on the Greater Boston area. And catch demonstrations of the new BodiTrack systems and sling lift scales at Abilities Expo Boston in September (see below)! Demonstrations may also be arranged through your local AT Regional Center.
AT for Living with Aphasia
The term “aphasia” is unknown to most people, yet the condition is familiar. An estimated 2 million Americans have acquired aphasia as result of a stroke, traumatic brain injury or progressive neurological disorder. These are our neighbors, friends, and family who may struggle to recall words or have difficulty with speaking, understanding what is said, reading or writing (or all of the above). Symptoms vary dramatically but too often aphasia causes feelings of frustration and isolation. A person with aphasia is experiencing an impairment to their use of language, not to their intellect.
The technology revolution has transformed aphasia evaluations (e.g., AAC Evaluation Genie), aphasia therapy (e.g., Constant Therapy) and especially communication (see below). Yet persons with aphasia and their family members are frequently unaware of the tools and strategies that can help them stay connected. Below we’ve listed links to low, mid, and high-tech assistive technology (AT) commonly used by speech-language pathologists, AT specialists, caregivers and others who work with individuals with aphasia.
These tools are entirely in the category of “augmentative and alternative communication” (AAC). They are AT devices that can be explored with persons with aphasia following, ideally, a professional evaluation of their expressive and receptive language (speaking and listening) abilities. Low-tech AAC tools may be made by the user or caregiver. Mid and hi-tech AAC tools are devices commonly available for demonstration and to borrow from MassMATCH (loaned for trial at no cost). MassMATCH can also direct you to where to find the evaluation and training services necessary to get the most from assistive technology, including AAC.
Aphasia is challenging for individuals and families. Finding ways to communicate, connect and bring forward interests and intellect is important for maintaining dignity and asserting personhood.
Low-tech AAC for Persons with Aphasia
(hard-copy tools for pointing/selecting)
- Pictures in an album
Use a photo album with pictures that the user can point to for improved communication. Consider a talking photo album as a mid-tech option (with recorded messages assigned to pictures for selection). - Alphabet boards
For persons with aphasia who can spell but not speak their words. - Rating Scales
To help communicate preferences - Pain Scales
Familiar to most of us from the doctors’ office/hospital. - Family Tree
For remembering names - More Printable Communication Tools
From PatientProviderCommunication.org - Webber Communication Book
A product that can be purchased and customized to the user for communicating sentences and more.
High-tech AAC for Persons with Aphasia
(apps for tablet computers or AAC devices that have voice output–also known as “speech generating devices” or SGDs)
- Proloquo2Go (app for iOS from AssistiveWare)
Allows users to create sentences using symbols or letters that are then read aloud by a computer voice of the user’s choosing. Pre-recorded messages may also be programmed for selection by the user. Robust, dynamic, research-based application. - TouchChat (iOS app)
Robust AAC software that offers “Communication Journey: Aphasia” — a vocabulary file containing features and vocabulary designed for individuals with aphasia. - Compass (Windows and iOS app from Tobii Dynavox)
Offers a stroke and traumatic brain injury (TBI) user profile. - Small Talk (iOS apps from Lingraphica)
Free apps with male and female user versions. - Tapgram (web-based application for use with every device)
Users can send messages to people in their lives by tapping on images and receive replies. - TalkTablet (app for iOS, Android, Windows, and Kindle)
Simple to program, more affordable AAC with tech support. - TouchTalk (device from Lingraphica)
This is a “dedicated device” (not a mainstream-consumer tablet computer) with specialized software designed for persons with aphasia.
Learn more about communicating with individuals who have aphasia
Learn more about aphasia
Register Now for the Assistive Technology Makers’ Fair!
MassMATCH is excited to be working with the New Hampshire AT program, ATinNH, to plan the Making AT for All Conference and Expo happening in September. This is an opportunity to learn from AT maker-movement leaders and get hands-on with making assistive technology while earning CEUs. The Fair will provide the methods, materials, and know-how needed to efficiently create everyday solutions. This is a novel approach to acquiring just-in-time AT for use at school, home, work, and play.
The day will feature a Make AT Cafe Makerspace, an AT Invention Contest, workshops, an exhibition hall of vendors/program booths and keynotes from Bill Binko, founder of ATMakers.org and Therese Willkomm, Ph.D., Director of ATinNH. Organizers include MassMATCH, the Adaptive Design Association, AT3 Center, fabricATe, ATMakers.org, Makers Making Change and more!
Who should attend?
Individuals with disabilities, family members, caregivers, educators, administrators, therapists, and program directors. Anyone interested in making assistive technology! Novice to veteran makers of all ages and abilities are welcome.
Where?
The Grappone Conference Center
70 Constitution Avenue
Concord, NH 03301
When?
September 29, 2018
8 a.m. to 5 p.m.
How Much?
$199 for the day: includes materials to make devices, lunch, refreshments and CEUs (NHOTA, NH-ASHA, ASHA and RESNA ATP)!
Learn more and register
Read about the AT Maker Movement
Join MassMATCH at Abilities Expo Boston!
MassMATCH is again a sponsor of Abilities Expo Boston and looks forward to seeing you there! Abilities is a showcase for cutting-edge assistive technology, adaptive sports and dance, local and national exhibitors and offers dynamic workshops, face-painting for the kids and more!
This year MassMATCH will be showing off our expanded equipment available from the Weight and Seating Independence Project. Visit our booth to learn about Pressure Mapping Technology and the new scales available to borrow from MassMATCH AT Regional Centers.
When:
September 21-23rd, 2018. Friday and Saturday 11 a.m. to 5 p.m., Sunday 11 a.m. to 4 p.m.
Where:
The Boston Convention and Exhibition Center, Hall A.
How Much?:
Registration is FREE