Outline of the state of Massachusetts with people inside and "MassMATCH"MassMATCH NEWS Quarterly

Maximizing Assistive Technology in Consumers' Hands

Winter 2013    
Professor Cory's Waking Moment
Bob Maloney Wants You to Know About the Power of AT (for Indpendent Living)
Navigating Wheeled Mobility?
Now Available for Borrowing: The Bright Box Tactile Switch!
Attention Schools! A Better Tool for Tracking Your AT is Here
Get AT Stuff Highlights
The Night We Delivered Linda's First Computer, by Prof. Les Cory
"Mirror," by Linda Texceira
Book Review: Memory Books and Other Graphic Cuing Systems
Upcoming Events
Professor Cory's Waking Moment

The story of the SHARE Foundation and one memorable evening...

Photo of Dr. Cory talking to Linda Texceira.
Prof. Cory speaking with Linda Texceira
In the early 1980s, Professor Les Cory asked Linda Texceira what goals she had in life and immediately kicked himself.  "I thought, What a stupid question to be asking this person? What was I thinking?"

Texceira, then age 24, had the equivalent of a 4th grade education. Born with cerebral palsy, she communicated to her mother by gazing at individual letters on a Plexiglas board. Using this board, she painstakingly spelled out her answer: "I want to earn a high school diploma."  The reason? "To get a job."
At the time, Cory worked as a professor of electrical and computer engineering at Southeastern Massachusetts University. He'd read about Texceira in a newspaper article, and contacted the family. He thought emerging computer technology might be engineered to help her communicate more effectively. During their very first meeting, Cory realized that although Texceira had attended a school for students with intellectual disabilities, she was a far cry from meeting that criteria.  "We'd discovered we had the same birthday. Then she made this joke, and I saw she'd figured out my age from my birth year, and that our ages--24 and 42--shared the same numbers. 'Same numbers' she was telling me. It was my waking moment."
For Cory, meeting with Texceira that evening would jolt him in two important ways. First was discovering that she was locked in physical circumstances that prevented her from anything close to full expression of her personhood. The second came when she spelled out her desire to get a job.
"Here was a person" Cory explains, "who didn't speak or use her hands or walk, and she's saying she wants a job. So I asked her, What would you want to do? And she told me, 'I want to do something to help people less fortunate than myself.'"
Her words, likely, set the course for Prof. Cory's own career.
Texceira became the first client of what is now the UMass Dartmouth Center for Rehabilitation Engineering (CRE)'s SHARE Foundation. Cory founded SHARE along with  colleagues Phil Viall and Richard Walder. Its mission is "to empower physically challenged, non-speaking children and adults to express their basic wants and needs, communicate with others, control their immediate environments and achieve the greatest practical level of independence."
SHARE carries out its mission by providing services and high tech equipment that is specifically fabricated, programmed, and/or adapted to each person's unique abilities and needs. For Texceira, this has meant computer systems that enable her to have a voice and to write using a head switch. Texceira uses her head to select letters, words and menu options with a cursor on a computer screen. Her words can be printed, saved, or voiced by a speech synthesizer. In the early 80s, technology of this kind was so unusual--she was a pioneer with synthetic speech--that Texceira's transformation garnered national media attention. As result, SHARE's program received increasing numbers of referrals, and more creative solutions to extremely individualized needs followed. Eventually SHARE and its founders were honored by civic groups, the Massachusetts State Legislature, and even President Reagan.
To date SHARE has served nearly 3,400 individuals. Most clients have come from southeastern New England, but clients span 38 states and 7 countries. The foundation is a nonprofit, funded through donations, events, and a contract with the Massachusetts Rehabilitation Commission. Prof. Cory, himself, stopped designing equipment years ago to devote his time to fundraising. It's not what he'd prefer to do, he says, but he's mindful of the people waiting for services.
"One of the things that we've learned," Cory emphasizes, "is that when you take on a new client it's usually a very long relationship. People's abilities change, which means you have to change the inputs to the system. Peoples needs change, which means you have to change the outputs of the system. And then technology changes [or breaks]. We find the typical system is good for maybe three years out in the field before it's obsolete." As a case in point, Cory tells the story of a syndicated columnist with ALS.  The columnist kept writing because of a communication system that SHARE continuously re-engineered with different inputs. He communicated first through speech recognition software, then using an interface controlled by the wiggle of his thumb, then through moving his jaw, then his eyebrow, then an eyelid, and finally through eye-gaze technology. "He told us the respirator kept his body alive, but our system kept his mind alive. I believe he lived longer because of it." Currently SHARE provides ongoing technical support to over 1,000 individuals.
In 1991, Texceira earned her GED with the use of SHARE-designed technology. She later went on to take English courses at a community college. She has given numerous presentations on her journey with SHARE, and she enjoys writing poetry (see sidebar) and verse for greeting cards which she self-publishes.
As for Prof. Cory, he is supposed to be retired.  What this means, in practice, is he spends four days a week as a volunteer fundraiser for SHARE (and the rest of his time on his passion for restoring historic bells). Texceira's family is still very much in his life. Prior to interviewing for this article he'd just gotten off the phone with Texceira's mother, "It was about that problem we run into every 15 months or so. The one that gets resolved when I remind her to replace the dead battery." 

See the award-winning 1990 video about the SHARE Foundation and Linda Texceira (requires a Facebook login)


Visit SHARE's Web site  


Donate to SHARE  


Prof. Les Cory is director of the UMass Dartmouth Center for Rehabilitation Engineering and serves on the MassMATCH AT Advisory Committee.  

Bob Maloney Wants You to Know About the Power of AT (for Independent Living)

by Susan Gonsalves and originally published in the SHARE Notes Newsletter. Reprinted here with permission

Photo of Bob Maloney smiling and using his Drink Aid.
Bob Maloney
Photo by Tom Meggison
SHARE client Robert Maloney says it is his responsibility to educate other people "in the same situation I am in" about the possibilities available through assistive technology.

Since May of 2007, Bob, who has cerebral palsy and quadriplegia, has been living independently in an apartment in North Easton. He previously worked with Easter Seals and was trained on Dragon Naturally Speaking, a software program that activates household items and the computer via vocal commands. He operates his several systems by pressing switches with his head, using his voice, and sipping on a special tube. Read the rest of the article at this MassMATCH blog Web page.
Navigating Wheeled Mobility? MassMATCH Wants to Know...

Graphic of a person traveling forward in a wheelchair. Wheelchair users in Massachusetts have a range of experiences with maintaining equipment, sending equipment for repair, and finding a temporary chair while waiting for services. MassMATCH partners with two small reuse programs to help fill gaps experienced by residents who need equipment. The Boston Center for Independent Living and Stavros Center for Independent Living (in Amherst) each accept donations of DME (durable medical equipment such as manual and power wheelchairs) and make them available to individuals who need them. The programs are designed to be a hassle-free way to keep you moving. (Read a Stavros CIL reuse success story.)

Currently, MassMATCH is exploring ways to expand DME reuse in Massachusetts and part of that process is better understanding your experiences as a consumer.
  • Have you had an easy or difficult time obtaining needed repairs?
  • Have you been provided a temporary chair while waiting for your repair?
  • Have you made use of a DME reuse program in your community?
Email reuse@massmatch.org and tell us your story. Browse assistive technology (AT) and DME reuse programs at this MassMATCH Web page. Do you know of a reuse program in your community missing from this list? We want to hear from you!
Now Available for Borrowing: The Bright Box Tactile Switch!

The AT Regional Center in Boston (operated by Easter Seals) has added a new switch to the device loan program: the Bright Box Tactile Switch.
Photo of the Bright Box Tactile Switch.

The Bright Box Tactile lights up and/or vibrates when activated by a user.
It can be used to control communication devices, mouse interfaces or switch adapted toys with standard 1/8-inch jacks.

The MassMATCH Short-term Device Loan Program allows anyone to borrow assistive technology devices free of charge for up to 4 weeks at a time. Browse the inventory at this MassMATCH Web page. Read more about the Bright Box Tactile at this Adaptivation Web page.

Disclaimer: MassMATCH 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. MassMATCH, the Mass. Rehabilitation Commission, nor the US Dept of Education has not examined, reviewed, or tested any product or device referred to in this newsletter or at MassMATCH.org.
Attention Schools!
A Better Tool for Tracking Your Assistive Technology is Here
A.T. School Share logo: shows a schoolhouse encircled by recycling arrows.

The AT School Share now has 11 school entities signed up to use its online tools, and with their feedback MassMATCH has implemented an important system enhancement: the ability to track device assignments within a school or school system.

Now you can use this online tool to keep track of all your AT devices. You can even learn which devices are in high demand and which are collecting dust!

The MassMATCH AT School Share is free to schools, collaboratives, and districts. The goal of the program is to keep AT in the hands of students who can use it, and that includes helping schools and school systems track their devices so equipment stays in circulation. The program is also available to non-profit organizations with lending libraries that serve schools.

Interested? Check out the ATSS Web site. Schools, districts, and collaboratives decide how these tools can best work for them. Have feedback? Email schoolshare@massmatch.org.

Read more about ATSS inventory tracking.
Get AT Stuff Highlights
GetATStuff logo: image of New England States with recycling arrows around them

GetATStuff--the New England "Craig's List" for AT--currently has hundreds of items available for sale or free throughout the six New England states.

As of this writing, GetATStuff highlights include:

15 Vision-related items

including a Ameriphone JV35 Large-Button Amplified phone for $25 in Boston

1 Hearing-related items

Amplified Cordless Telephone for $45 OBO in Manchester, NH

27 Speech Communication-related items

including a Cheap Talk 4 for free in Forestdale, MA.

7 Learning, Cognitive, Development related items

including a DynaVox for best offer in Bristol, CT

325 Mobility, Seating, and Positioning related items

including a folding bath chair for $65 in Amherst, MA.

310 Daily Living related items

including a free air mattress in Pittsfield, MA

71 Environmental Adaptation related items

including a free bath tub assist bar in Watertown, MA

51 Transportation and Vehicle Modification related items

including a 2000 Dodge Caravan SE rear entry for 1 wheel chair for best offer Quincy, MA.

10 Computer related items

including a free fully adjustable computer station in Watertown, MA

11 Recreation, Sports, and Leisure related items

including a hand cycle wheelchair in North Attleboro, MA for $200.

Go to www.getatstuff.org to search items by category or geography or to list what you need. Go to the MassMATCH AT Swap and Shop web page to learn about additional AT reuse sites.

Quick Links
The Night We Delivered Linda's First Computer

Graphic of a desktop computer

by Professor Les Cory (from an email to MassMATCH
News Quarterly, used here with permission)

The first night we delivered Linda's computer it was very late - about 11 PM (why we were there so late is something of an unbelievable story in itself... for another time!) Phil and I set up the computer and then while I was trying to show Linda how to use the system she just wasn't cooperating. I asked her to do things and she was just ignoring me.

Then in the midst of my frustration I noted that
she had written "Thank you very much on the screen."  How she did that with essentially no instruction, I will never know. That's when I realized she didn't need the instruction I was trying to give her.  
She asked me if what she wrote would still be there tomorrow and I assured her it would unless she erased it.  Then she told me to go away and come back tomorrow. I couldn't believe she was sending me away. I reminded her that tomorrow at that point was in only about 20 minutes. 

"Yes" she said,  "Come back in 20 minutes, tomorrow."

So Phil and I visited with Al and Martha [her parents] in the living room while Linda worked at her new computer in the kitchen.  Well, it turns out that the next day was Martha's birthday.  At midnight when we went back to where Linda was working, she had spelled out "Happy Birthday Mom. I love you, Linda" There was not a dry eye in the house!
by Linda Texceira

When I look in the mirror I hope I will see,
The type of person that God wants me to be,
Make people happy by the way I act,
I did that last  month as a matter of fact.
I wrote to a girl in Morocco that I never knew,
She was feeling alone, lonely, and kind of blue,
She wrote me back a nice letter to say,
Your kind and caring words made my day,
When I  look in the mirror I hope I will see,
That very person God wants me to be.
Book Review

Memory Books and Other Graphic Cuing Systems

by Michelle Bourgeois, Ph.D., CCC-SLP

Reviewed by Randi Sargent

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. Available for purchase from Health Professions Press and Amazon.com.
Upcoming Events
Can Dragon Naturally Speaking Work for You?
Come learn about this speech recognition software for using a computer. Free.
Instructor: Josh Arico
January 9th
10 a.m. to 12 p.m.
UCP Berkshire
208 West Street
Pittsfield MA 01201
RSVP Dawn Matthews
413-442-1562 ext 34

AppShare! Apps for Accessibility--Vision

This is a drop-in time for people to come with their devices (Apple and Android) to share and learn about apps.
January 10th
1 p.m. 2 p.m.
AT Regional Center at Easter Seals
89 South Street
Boston, MA 02111

Apple iDevices: An Introduction
New users can learn how to get started with iPhone, iPad, iPod Touch.
January 16th
10 a.m. to 11:30 a.m.
AT Regional Center at Easter Seals
89 South Street
Boston, MA 02111

Learn about the Echo Smartpen
Take the stress out of tests and meetings with an Echo smartpen from Livescribe (records and synchronizes notes with audio). Free. Instructor: Jeff Harrington.
January 16th
10 am. to 12:00 p.m.
UCP Berkshire
208 West Street
Pittsfield MA 01201
RSVP to Dawn Matthews

Learn about Accessibility in Windows 7. Windows offers several programs and settings that can make the computer easier and more comfortable to use. Additional assistive technology products can be added to your computer if you need other accessibility features. Free. Instructor Dick Murphy.
January 23rd
1 p.m. to 3 p.m.
also at UCP Berkshire

Toby Churchill Communication Devices
Courtney Hildebrand from Toby Churchill will demonstrate everything from the LightWriter SL40 to the new Swift.
February 7th
10 a.m. to 12 p.m.
AT Regional Center at Easter Seals
89 South Street
Boston, MA 02111

Learn more about these and other events at this MassMATCH events Web page.
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