MassMATCH Quarterly News: Summer 2018
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 ...
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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 more than a year. Aphasia is a communication disorder and Robert could no longer speak more than a single phrase. "I would like ... I would like...," he would repeat again and again when Kristi first met with him about technology. Robert had acquired aphasia following his second stroke in April of 2016. Kristi was 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 routinely with individuals of all ages who have complex communication needs. She conducts AAC evaluations and determines, with her clients' guidance, if there is a speech-generating device (SGD) that can make a positive difference in their functional communication. She sets them up with appropriate AAC technology and provides the training necessary to use it. Sometimes that process follows a fairly straightforward series of steps and choices. 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 knowledgeable about the SGDs available to try out for up to 4 weeks at a time. The device loan program is a valuable resource for all kinds of assistive technology, but perhaps most of all for speech devices. Finding the right SGD is always very technical, and it's also often a personal and even emotional decision for the user.
Kristi suspected Robert's journey might present those challenges.
Speech Devices are Complicated
Robert, she'd been told, lived at an assisted living facility south of Boston where he was very unhappy. Kristi's job was to get him communicating with an SGD that would work for him. The goal, as with all AT, 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 include complex apps on iPads and other tablets as well as unique "dedicated devices" designed only for communication. All options allow for voice output of messages created and/or selected by the user. Messages can be built with text or symbols or may be pre-recorded, and some users blend these strategies. Individual needs, abilities, and preferences vary dramatically.
Complicating Robert’s situation, Kristi says, is he had few communication partners and a strong-willed personality. At his assisted living facility there weren't people he wanted to talk to and he had no family members active in his life. From what Kristi could tell, he was isolated and often frustrated.
Aphasia IS Frustrating
Robert may have always been set in his ways, but aphasia is a frustrating condition. It's a language processing disorder that individuals experience differently. Symptoms can include difficulty with word recall and speech, with understanding what is said, with reading and/or writing. In Robert’s case, Kristi’s assessment suggested he understood very well, but he could not read or write and he could speak, at most, three words. Like many persons living with aphasia, Robert's intellect was not affected. He had good reasons to feel frustrated.
The SGD Robert already had was a TouchTalk purchased through insurance during his time in rehab. This system is specifically designed for people with aphasia, but Robert would gesture toward it dismissively.
Unfortunately, Kristi had no way of knowing what Robert didn’t like about his TouchTalk. He wouldn't respond to her yes/no questions about this device. He'd repeat, "I would like...", and they could get 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 as well as Tracy, a staff person at his day program who was a tremendous ally for Robert, as he worked through his device and vocabulary preferences. Tracy is not an SLP; she is entirely self-taught, but as his principal communication partner, she became invaluable to Robert and this process.
"None of this would have been possible without Tracy," Kristi says.
Tracy was highly motivated, as was Robert's Waiver Program coordinator, to see him achieve success with AAC. There was also an SLP at the day program who was an essential part of the team. Together they were determined to help Robert figure out what he needed.
Tracy sat with Robert over many days and weeks, drilling for what he wanted to communicate, using yes/no questions with photos he had in a box. A photo of Robert cycling was something he lit up to talk about. The bike, it seemed, was important. Robert still rode his bike.
Aphasia Would Not Define Him
Over time they learned much more about Robert. They learned he'd flown planes. When they learned he was a runner, they asked about marathons. He nodded emphatically.
Boston?
Yes, he answered. Then he counted on his fingers. He'd run the Boston Marathon ten times.
One visit, during a break working with the device, Kristi and Tracy were chatting and discovered a mutual interest in alternative medicine. Tracy is a Reiki master. Kristi is vegan. When Robert became animated they found out he is also vegan, and that he meditates. Soon Robert wanted scripts on all of these topics.
Aphasia would not define him.
Each of these revelations was like a small victory for Robert and his team. Everyone enjoyed him and now they knew so much more about him. After reviewing the Compass app with Robert and gauging his enthusiasm, Kristi recommended to the Waiver Program they purchase it. She felt confident he'd found what he wanted.
The story should end here. But it doesn't.
Apps Aren't Perfect
After setting up a new iPad using his vocabulary and photo assets with Compass, Kristi delivered it to Robert at the day program and checked back two weeks later only to find him unhappy. He wanted structural changes that Kristi and Tracy soon learned the app was not designed to accommodate. He wanted scripts only and nothing else on the display.
She and Tracy began tearing their hair out digging into re-programming Compass. The app is built for customizing, but not for the fundamental changes Robert wanted. "The idea behind Compass is it's loaded with features and vocabulary and you shouldn't have to alter it that much to make it work," she explains.
Robert disagreed.
Kristi began doubting her initial evaluation with Robert and regretting the timeframe for evaluation necessary with her work with adults. He'd had the most success with scripts, she observed. Did he have more trouble with navigation than she'd realized? With categories? His subset tests had looked good...
Kristi told Robert's team about her doubts and that she was ready to start again. The Waiver Coordinator said she'd support another app purchase, if necessary, and Kristi proposed to Robert that they create scripts for him on all his favorite topics using TouchChat, one of the apps he'd dismissed early on.
Yes, he was clear, he would try it.
So Kristi borrowed an iPad preloaded with TouchChat from the AT Regional Center in Boston. Kristi created pages on topics that opened to sentences for selection. She reviewed it with Robert at the day program, left it, and returned after another two weeks.
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 continue with what Kristi had initially recommended.
So at the end of April 2018, Kristi and Tracy dug back into Compass. They couldn't strip the app but they could reduce the number of buttons on each topic page to fewer sentences for less confusion. They customized each button with messages that were very meaningful or helpful to Robert. And when Kristi returned after two weeks... she found a different man.
"He was using it! He was in a groove. He was even using it at his assistive living facility, which was huge!"
Did she think he just needed to come to terms with compromise?
"I have no idea," she readily admits.
Today Robert no longer lives in 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 communicate with his Waiver coordinator how important it was to him to get out of a city.
Robert, it seems, has every intention of enjoying all of his passions, and talking about them too.
Photo credit: Pixabay
MassMATCH Reaches the North Shore and Cape Ann
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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."
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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!
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ILCNSCA staff with Karen Langley, REquipment, Inc CEO. |
The Weight and Seating Independence Project is NOW Statewide!
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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).
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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
