The incredible true life adventure of MassMATCH AT Advisory Council member Peter G., and his ATIA video contest victory
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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.
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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 TrainingsPlans: 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).
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Get AT Stuff Highlights
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G etATStuff--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.
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'Tis the Season: Adaptive Toy Resources
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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.
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Computer
Play with Young Children with Disabilities, a booklet offering suggestions on selecting and using software programs to
promote playful interactions.
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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.eduToys '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
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Ask the Expert: Voice Amplifier Needed
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| 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 Speech Amplifier web page. 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 Mass. AT Loan Program through Easter Seals. Contact for both is jluciano @eastersealsma.org
I hope this helps. Please feel free to contact me again for any further assistance.
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How Peter G. is teaming up with MassMATCH
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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."
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Wanted: providers to refurbish and recycle DME
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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: click here to view the entire Request For Response (RFR) at the Comm-Pass website
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New Product Spotlight: TapToTalk and the NDS Talker
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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 www.taptotalk.com
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. Click here to learn more about the NDS Talker and to download it for free.
Reminder: MassMATCH and
the U.S. Department of Education make no endorsement, representation, or
warranty expressed or implied for any product, device, or information set forth in this electronic newsletter. Neither MassMATCH nor the U.S. Department of Education has
examined, reviewed, or tested any product or device contained herein.
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