MassMATCH NEWS Quarterly

Maximizing Assistive Technology in Consumers’ Hands
Winter 2009
IN THIS ISSUE -The incredible true life adventure of MassMATCH AT Advisory Council member Peter G. and his ATIA video contest victory -AT Summit Update -Get AT Stuff Highlights -‘Tis the Season: adaptive toy resources -Ask the Expert: voice amplifier needed -How Peter G. is teaming up with MassMATCH -Wanted: providers to refurbish and recycle DME -New Product Spotlight: TapToTalk and the NDS Talker The incredible true life adventure of MassMATCH AT Advisory Council member Peter G., and his ATIA video contest victory

For Peter G., assistive technology offers people with disabilities a game-winning Hail Mary pass; the problem is that more people need the chance to get in that end zone.

In 1988, Peter G. became disabled and had to withdraw from Bates College six weeks before his expected graduation. For the next eleven years, homebound and in bed, Pete relied on his parents for most of his needs, and experienced profound social isolation. As an avid sports fan, he said, “It felt like the game was over.”

That was before he learned about assistive technology.

This past October, Pete won the AT Industry Association’s AT video YouTube contest. His video, “My Assistive Technology (AT) Success Story,” includes a reference to Doug Flutie throwing a Hail Mary pass from the 48 yard line. “This game is over,” declares the announcer, before erupting, astonished, at Boston College’s unexpected win. That moment, Pete explained in a recent phone interview, is a metaphor for his own experience. Learning about AT provided him that same transformative moment. Turns out it wasn’t “game over” after all.

“I was looking for meal services, talking on the phone to MRC [the Massachusetts Rehabilitation Commission], when the man asked me, ‘would you like a voice activated computer?’ And I was, “Excuse me? Did you say ‘voice activated’?!”

Today Pete uses multiple forms of voice activated technology. Pete has many of the limitations of a quadriplegic and the technology helps him be independent on a level that had previously been impossible. A Quartet Technology Environmental Control Unit (ECU) allows him to manage his living environment (hospital bed, lights, television, drapes, computer monitor); the voice recognition software Dragon Naturally Speaking provides him with comprehensive computer access. And computer access has enabled him to create a website for his family’s business, write articles on AT for newsletters and magazines, and effectively tear down his social isolation.

“Before AT became a part of my life, I was merely existing,” Pete calmly reports in his video. “Now, thanks to AT, I am truly living.”

On the phone Pete admits that an important hurdle remains: finishing that Bates College degree. Until recently, Bates College didn’t accept online course credits, his best bet for finishing those incompletes. “And until recently I didn’t have the technology to follow through anyway.”

His technology hurdle was a problem with Dragon Naturally Speaking. Dragon is powerful software that enables Peter’s computer to respond to customized voice commands, providing a hands free operation that is nearly as efficient as conventional computer access. Dragon’s principal weakness, however, is its tendency to freeze up. It’s a problem that required Peter to reboot multiple times a day, over a hundred times a month, each time requiring help from his parents. “Under those conditions I couldn’t really imagine signing up for online college courses or taking online exams,” he explains on the phone.

In his video, Pete doesn’t get personal. We don’t learn much about his disability and he never mentions those unfinished college credits. “I didn’t want to distract from the AT,” he explained on the phone. “The AT is the point.”

Indeed, the unique strength of his video is his demonstration of the innovative and pragmatic way he now gets around Dragon’s weakness. Pete and his Easter Seals AT specialist, Eric Oddleifson, solved the problem by installing ViaVoice, back-up voice recognition software. Together they learned that ViaVoice can co-exist with Dragon in sleep mode when Dragon is operable. When Dragon freezes, Pete can wake up ViaVoice and use it, along with a HandiEye hands-free mouse emulator and a Logitech QuickCam, to reboot his computer and get Dragon moving again. “Now,” he reports, “I need my parents, maybe, once a month.” And, “Yes,” he confirms, “I am researching online college courses.”

Pete’s video won the ATIA’s Grand Prize: an all-expenses-paid trip to attend the ATIA 2009 Chicago Conference at the Renaissance Schaumberg Hotel and Conference Center. He also won the Member Physical Access/Mobility Special Interest Group Award: a $400.00 visa gift card. Pete was unable to attend the conference, but donated his conference winnings to the Easter Seals AT department.

The rewards for entering ATIA’s contest go far beyond the prizes, however. Winning the competition was partially dependent on the number of views Pete could generate to his YouTube video. To help, Easter Seals spread the word, and the provider of his personal care attendant (PCA) sent an announcement on their listserv. Pete also got the word out through his Bates College e-zine, through Facebook to college friends, and through his father’s fraternity brother network. “People were amazed by the technology. Many didn’t know anything like that existed. I had over 300 hits from my college newsletter, and over 100 hits on the PCA network, all with similar comments. Even people working with people with disabilities didn’t know much about AT.”

Which, for the ATIA, is the whole point. “Since our inception 10 years ago,” asserts Executive Director David Dikter in his press release, “the overarching goal of ATIA has been to educate and create awareness about assistive technology and the enhanced benefits and opportunities it brings to people with disabilities.”

But for Pete, AT is really much more. It turns Game Over to a game-winning Hail Mary Pass. “It’s what motivates me. To help more people achieve unexpected success.”

Learn more: Read Tips from Pete at the Easterseals-MA website. To view Pete’s video as well as the 28 other video contest entries visit this ATIA video contest web page.
AT Summit Update
Last May, MassMATCH sponsored an AT Summit to bring together staff members of state agencies who provide assistive technology services in Massachusetts. Participants of the summit learned about each others work, identified barriers to and gaps in AT services, and began to brainstorm collaborative solutions. Below we review the action steps planned as result of the Summit and report on the work accomplished to date.

AT Summit Action Steps

1. Cross-Agency Trainings

Plans: 4 cross-agency trainings were planned for September for staff members who work with consumers transitioning from facility-based care to community living. The trainings were planned to cover AT and Transition to help insure consumers have access to the technology supports they need.

Work to date: 5 cross-agency trainings were conducted in September. Participants included staff from Independent Living Centers, nurses and case managers from Aging Services Access Points (ASAPS), Supported Living and community provider staff, staff from Mass. Rehab. Commission, the Dept. of Developmental Services, and the Dept. of Public Health.

2. Meetings with MassHealth and DME vendors

Plans: Meetings in November to discuss wheelchair repair issues and to collaborate on distributing MassMATCH outreach materials.

Work to date: As of this writing, MassMATCH has a December meeting scheduled with MassHealth to discuss the need for creating a working group for improving wheelchair repair services, and for discussing disseminating MassMATCH outreach materials through MassHealth DME vendors. Wheelchair repair is understood to be a systems change issue that will require a substantial time investment.

In addition, MassMATCH has conducted program outreach and awareness activities with staff from DPH’s Bureau of Family Health and Nutrition, and the Executive Office of Elder Affairs.

3. Mapping of State Agency Personnel with AT Expertise

Plans: Cross-agency outreach to gather profiles of state agency staff with AT expertise.

Work to date: a spreadsheet of profiles is nearing completion. The assessment tool includes name, agency, job title, site, years on the job, specialized skills, population served, years to retirement, etc. and will be used for aiding collaborations among state agencies.

4. Exploring Collaborations for AT/DME Repair

Plans: to explore collaborations with a community college and/or vocational technology H.S. to create a training program in AT/DME repair.

Work to date: In the short term, MassMATCH has refocused its efforts to create partnerships for AT/DME recycling and refurbishment. A Request For Responses (RFR) was released this fall to fund programs with the capacity to collect, refurbish, store, advertise and distribute donated wheelchairs and other AT/DME. As of this writing, one contract to Stavros has been awarded to serve a portion of western Massachusetts. The RFR remains open to additional bidders to cover more regions of the state (see sidebar).
Get AT Stuff Highlights

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:

18 Vision related items

including a free ClearView magnification machine by Human Ware in video magnifier in Hardwick, VT
2 Hearing related items

including an FM system for $500 OBO in Woonsocket, RI

10 Speech Communication related items

including a free Zam Communication Device in Boston, MA

6 Learning, Cognitive, Development related items

including one platform swing for $50 in Williston, VT
352 Mobility, Seating, and Positioning related items

including one free Action Arrow power wheelchair in Amherst, MA
297 Daily Living related items

including a bariatric hospital bed for best offer in South Deerfield, MA
45 Environmental Adaptation related items

including a free Hoyer Lift in Amherst, MA
41 Transportation and Vehicle Modification related items

including a van lift for $50 in Plattsburgh, NY
9 Computer related items

including a Dolphin EZ Reader for $25 OBO in North Scituate, RI
14 Recreation, Sports, and Leisure related items

including one special needs ride-on toy for $250 or best offer in Sudbury, MA
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.
‘Tis the Season: Adaptive Toy Resources

Games and play activities are important in any learning process for children of any age. However, some children have difficulty playing with commercially available games, books, and toys.

AblePlay provides a database for toys for children with special needs. Search by disability category, specific disability, product category, age range, brand, or product name. AblePlay independently rates and reviews toys. The site was developed by the National Lekotek Center, a nonprofit authority on play for children with disabilities. Go to www.ableplay.org.

Letsplay Projects at the University at Buffalo provides this web page of play resources for parents and professionals. Free information includes:

• Playing with Switches, a booklet on using battery-operated toys and games with single switches for play and communication purposes.
• How We Play, a calendar to help parents play with their babies with disabilities. Each of the six Emerging Play sections includes information on: What The Child Does What the Caregiver Does Play Material Positioning Options & Adaptations.
• Computer Play with Young Children with Disabilities, a booklet offering suggestions on selecting and using software programs to promote playful interactions.
• A Guidebook for Developing, Using, and Maintaining a Play & Assistive Technology Lending Library
• Creating Play Environments, a guidebook for parents.
• Let’s Play Sheets, a collection of one-page idea sheets for birth through age 3.

Visit www.letsplay.buffalo.edu

Toys ‘R Us provides a toy guide for differently-abled kids. At the site parents can shop by skill: auditory, creativity, fine motor, gross motor, etc. Visit www.toysrus.com/differentlyabled

Quick Links

 

 

 

 

 

Dear Expert:

My voice is too low for people to hear well. I met a woman at a conference who was having trouble understanding me and she mentioned there are devices that can amplify a person’s voice. Please tell me what my options are.

–Ready to be Heard in Mass.

Dear Ready to be Heard:

There are a variety of voice amplifier products on the market. AbleData lists eleven at this

. I have heard the Chattervox works well, but the amplifier that you wear around your waist is fairly large and noticeable. You will want to explore your options. Some products work to clarify speech as well as amplify. The products range in price from $250.00 to more than $500.00.

If the device you want to buy is under $500 you might apply for the Loan-Term Device Loan Program through Easter Seals. They purchase devices under $500 and loan it to you long term. If the device is over $500 you can apply for a low interest financial loan with the

AT Loan Program through Easter Seals. Contact for both is

I hope this helps. Please feel free to

again for any further assistance.

 

 

Peter G. joined the MassMATCH AT Advisory Council in January, 2009 to help raise awareness of the power of AT for people with disabilities. He is now active with a council subcommittee interested in embedding, and in some cases developing, fully accessible video clips to and for the MassMATCH website.

The subcommittee is partnering with professors and student interns of the Northeastern University Physical Therapy Department to produce accessible clips. Their ultimate goal is to provide YouTube videos of AT in action, clips that will help people browse the devices available to borrow, free of charge, from the MassMATCH short-term device loan library. “Seven years ago I acquired my Quartet Technology Environmental Control Unit sight unseen,” Pete explains. “People with disabilities need a way to browse AT and help them determine which products to try out. Not everyone can make it to an AT demonstration center.”

Wanted:

providers to refurbish and recycle DME

On behalf of MassMATCH, the Massachusetts Rehabilitation Commission (MRC) is currently seeking providers to offer reutilization/recycling of used power wheelchairs, power scooters and power standers.

Applicants should have the following qualifications:

-Significant and extensive prior experience working with individuals with different types of disabilities, including seniors and children, and people from diverse cultures.

-An understanding of the importance of providing repair and maintenance of DME in a timely way.

-Experience repairing a range of DME including different types of wheelchairs and scooters.

To learn more:

 

New Product Spotlight: TapToTalk and the NDS Talker

TapToTalk turns the popular Nintendo DSi and DS Lite portable game consoles into augmentative and alternative communication devices. By tapping a picture on the screen, the TapToTalk “speaks” with a pre-recorded sound or voice. Parents subscribe to TapToTalk for $99.95 a year which provides the TapToTalk game cartridge and standard memory card to copy pictures and sounds from their computer. Subscribers are also provided access to the TapToTalk Designer website which provides a large library of pictures, sounds, and a starter album. Users can also customize with their own pictures and sounds. The Nintendo DS Lite and DSi cost about $129 and $169 respectively. To learn more visit

Also worth investigating (particularly for those who cannot spend $99.95/year) is the free NDS Talker. The program was created by a German parent of a child with autism and works with black and white pictograms. The application is in German, but the manual is in English and tells you how to substitute the speech files with your own. It works with the Nintendo DS, but not the DS Lite.

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