Summer 2013: AT Camp Edition
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How Summer Camp Helped Me Become the Person I am Today

Photo head shot of Liz Persaud.
By Liz Persaud, Training, Development and Outreach Coordinator, Tools for Life at AMAC/Georgia Tech
 
“Hey Lizzie, take a look at the letter and photos that came in the mail for you today!” The photos were of Camp Walk and Roll, and the letter was from the Atlanta Muscular Dystrophy Association (MDA). The day my parents invited me to take a look, I was not quite 7 years old. And I had no idea this conversation would lead to a series of life-changing events that would so profoundly help shape me as a person. 
 
I was diagnosed at the age of nine months with a neuromuscular disease called Spinal Muscular Atrophy Type 2. Naturally, having a child diagnosed with what was thought, at the time, to be a terminal disease, was overwhelming and, at many times, scary for my parents. Now when I have frustrating days--where my body and brain decide that they aren’t friends and don’t want to work together--I think about the news that my parents received when I was newly diagnosed. In a nutshell, they were told I would never receive a proper education, that I should be institutionalized, that I would be dependent on them for the rest of my life,  and--my favorite--that it would be difficult for me to make friends (so I shouldn’t participate in extracurricular activities)! Needless to say, they resisted that advice and I defied those expectations. Making friends and having lasting relationships comes natural to me. Indeed, by the time the letter came in the mail, I was already a talkative social butterfly. 
 
Still the idea of going to summer camp was both exciting and terrifying! The photos showed a swimming pool and I loved to swim. But my parents and I also discussed how this camp lasted one week and was not a camp where you come home every day. It was the kind where you stay overnight, away from your family and toys!

Yet at Camp Walk and Roll there would be other children like me--kids with Muscular Dystrophy and other neurodegenerative diseases, kids who use wheelchairs, assistive technology and other devices to be independent. So far the schools I had attended had not had many children with disabilities. All of my friends were able-bodied. It was never an issue when we were playing together, until my friends went on the monkey bars or on the slide or sat down in the sandbox. Everyone still talked to me and I to them, but I just sat and watched, never fully participating. So going to a place where there were more people like me didn’t seem so bad!
 
I went along with the decision to attend camp, but truthfully I was terrified. Being away from home can be terrifying to any child, but for a child with a physical disability who depends on her parents, siblings, and the safety of a daily routine to get up and out of bed and conquer each day, summer camp is new and scary territory. Looking back, I think my parents were scared too, but they were always thinking about the bigger picture. They knew what this could mean for me as a child growing up and becoming a teenager, going through school, going to college, and ultimately becoming a professional working woman… with a disability.

I remember when we arrived at camp on the first day, my mom and dad walked me down to my cabin with my newly appointed counselor. Each camper was matched with one counselor who would be their support, and provide care. My mom showed my counselor all of my personal belongings, and I overheard her giving the quick rundown on how to provide my personal care. I remember thinking “Mom is a fast talker so I hope this woman has a good memory!” But when it was time for my parents to leave, my mom and dad both leaned down, kissed my face and said what I thought sounded simple at the time: “You’re in charge.” They said it was my responsibility to show and discuss with my counselor, and anyone else who needed to know, how to properly provide my care, exactly what needed to be done. Little did I know those words would help me to shape my view on so many perspectives and obstacles yet to come.

Photo of Liz as a child with another camper, also in a power chair, and a counselor leaning in between them.
Liz, Jess, and a counselor at Camp Walk and Roll, Dee. Liz and Jess were part of a generation of campers who started camp on the same day and "graduated" together. They have now been friends for 25 years
 
From that day forward, my life changed. I was in charge. I was 7 years old and directing my personal care. I gave verbal instructions and showed my counselor how to pick me up and transfer me in and out of my wheelchair, how to help me use the bathroom, give me a shower, dress me, style my hair, help me eat, position me in bed at night, and start all over the next day. For many years I had the same counselor, but there were a few years where new people would come in and I’d find myself having to explain my ever-changing routine to someone new in a new way. 
 
Over the years I found that having the opportunity to describe my disability and discuss my care has helped me to be efficient when I am communicating in my life outside of summer camp. It shaped the way that I spoke with teachers, personal care assistants, bus drivers, doctors, nurses, friends, and now as a working woman, my peers. At such an early age, the way I viewed myself, as well as others with disabilities, and the way I spoke about my disability became a positive conversation. I was able to learn skills that enabled me to describe my disability in a medically accurate yet socially accepted (and hopeful) way. Working with a counselor and being away from the routine of parents who had always provided my primary care showed me that I am my strongest advocate. 

Photo of Liz and another camper in a power chair goofing around with counselors draped in silly string.
Liz, far right, and a few of the counselors surprising an MDA staff member on her late-night bike ride.

I attended MDA Summer Camp for 14 years. As I grew older, counselors treated me more as an equal, and younger campers approached me to hang out and talk about their camp experiences, their disability issues, and what that meant for their life outside of camp. Many of the conversations I had with campers and counselors were deeply focused on living with a disability and what our lives were like all the other days of the year when we were in school, at home and/or at work. It’s been an honor to build those relationships.
 
Today I am 34 years old, recently engaged, and I have a job that I absolutely love! I work with an amazing team and help others with disabilities learn about assistive technology and build their self-advocacy skills. I am often asked to share my story about camp with parents of young children with disabilities, especially those who are unsure about having someone else provide physical care for their child. 
 
I tell them that for someone with a disability, whether they are a young child or a teenager, attending summer camp will help to shape their life for the better. Not only are they experiencing independence, but they’re interacting with people who are like them; they’re receiving opportunities to participate in activities that are adapted for them; and they’re learning skills that will help them to be productive and find their level of independence as an adult. They’re receiving a gift.

Photo of a group of campers and others outside. Liz is in the center.
Liz, in the middle, along with a few campers and counselors at Camp Walk and Roll
 
For me, at Camp Walk and Roll, I knew I finally found a place that was created for me, but more importantly, I found others like me. On that first day, I remember seeing the pure joy on everyone’s faces; there had to be over 100 kids in wheelchairs rolling around, laughing, and instantly making friends. On that day, I wasn’t just the girl in the wheelchair who was seen as “different,” I was funny, I was active, I made friends, I was Liz – I found myself. 
 

ACES Summer Institute Empowers Transition-Age Youth


High school students, young adults, and pre-professionals learn essential skills together

Photo of two ACES participants in front of a lunch cart at Temple, seated with AAC devices.










ACES participants order lunch at one of Temple's food vendor trucks

This July 15-26th, 6-8 young people with complex communication needs will attend ACES Summer Institute on the campus of Temple University in Philadelphia. They are a blend of high school students approaching adulthood and twenty-something graduates who come for a chance to live on campus, join and contribute to a community of learners, and gain essential skills for life's next phase.  
 
Augmentative Communication and Empowerment Supports (ACES) was founded in 1990 by Diane N. Bryen, PhD, then Executive Director of Temple's Institute on Disabilities. Originally funded by Pennsylvania's Office of Vocational Rehabilitation for adults seeking employment, the program has since evolved to focus exclusively on young people transitioning from school-based supports to adulthood. "It's where we see we can have the greatest impact" notes Institute Co-Executive Director Amy Goldman. 

Students come for expert individualized services to improve their use of speech generating devices (SGDs); training on computer access, software, and social networking; and empowerment classes to learn to use their voice for self-advocacy. Goldman says some parents go to impressive lengths to ensure their children have this opportunity, and that it's easy to see why. "Unfortunately, despite the law, transition planning often begins in March of a student's last year." ACES offers young people a much needed extra bridge. 
 
To provide that bridge, ACES has begun working with students and their teams the year before the summer intensive. Staff members now attend IEP team meetings to get to know each student, advise, and inform ACES summer training plans. Following the summer institute, ACES graduates receive follow-along technical assistance services for up to a year (where feasible).  "It's why we're offering it every other year now--to ensure we have time for preparation (including time to find funding for potential participants) and follow through and because it takes a lot of planning to run ACES." 

ACES is, indeed, staff intensive. What makes the summer institute possible is its capacity to serve a purpose beyond its direct benefit to participating transition-age youth. The program is over 20 years old and boasts an alumni community of more than 150 individuals. As a well-established program, ACES benefits by returning staffers, repeat participants, and alumni who come back as peer mentors. It attracts undergraduates and graduate volunteers from diverse disciplines who need field experience and observation hours, as well as the occasional already certified speech language pathologist (SLP) who is eager for hands-on AAC experience. To complement the field hours, Temple offers a summer seminar on related special education topics for undergraduate and graduate credit. "We're hitting a lot of needs in the whole system," Goldman emphasizes. 

ACES  Nuts and Bolts

12 nights in the ACES dormitory;
 
2 meals/day plus a lunch stipend to purchase from a campus food vendor;
 
10 days of on-campus instruction including: 
  • 20 hours of communication: AAC therapy provided under the direction of PA licensed and ASHA certified SLPs focused on helping participants attain operational competence in the use of their speech generating devices.
  • 9-12 hours of computer access and use (for home/work/community) to include MS Office applications, access to the internet, email and social media.
  • 9-12 hours of empowerment training such as information on the ADA, managing personal assistant services, issues of personal safety, community services, skill building, and employment skills.
  • Support sessions for parents/ tutors.
In addition, ACES blends evening and weekend recreation opportunities into the schedule, and the general expectation that participants will use their communication devices with each other and on campus.
Photo from an ACES pool party. Four individuals, two using AAC devices, sitting and conversing.
Pool party! Guest Speaker Ami Profeta converses with an aid, a participant, and a volunteer
 
Participants come with their own support staff (a parent, a paid personal attendant, whomever they choose who can stay and learn with them). And ACES hires a resident advisor for the dormitory. "It is expensive," Goldman admits, "and it's not for everyone. Participants must be able to handle full days of training."

Tuition for 2013 is $2,800 including room and board, though ACES provides funding counseling. However, the true cost of the program is closer to $5,000. Tuition is subsidized by staff time funded by Pennsylvania's Initiative on Assistive Technology (PIAT), since ACES is part of PIAT's transition activities (required under the AT Act). Goldman reports one family has succeeded in getting their school district to pay a portion of the cost as an Extended School Year program, and another successfully made use of Pennsylvania's Autism Home and Community-Based Medicaid Waiver. But so far those are exceptions rather than the rule. Most families are simply committed and scrappy; one mom turning 50 asked friends and family to forego a big party and contribute to her son's ACES tuition instead!
 
ACES outcomes are largely anecdotal and include transition to college, community volunteering, improved use of SGDs and the adoption of more powerful technologies. A goal of the program for 2013, Goldman reports, is to take more pre and post measures of not  only participants, but also volunteers and students taking the ACES seminar. "We want to learn about diverse program impacts. Can we see outcomes for confidence and skills? What tech skills have participants learned? What about self-advocacy  and other soft skills? Does it change future educators' views on the capabilities of people who do not speak?"
 
So stay tuned!

ACES participants come from Pennsylvania as well as out of state. To learn more about ACES visit this Institute on Disabilities ACES Web page. Email: ACES Coordinator Carrie Leonhart 

Touch the Future's Hands On AT Summer Camp for Educators!


Sandy Hanebrink works to bring top-quality assistive technology (AT) training to local educators and build a networking community

Graphic of a wooden sign shaped like an arrow reading "camp". An owl is perched on top looking at a hovering butterfly.

Assuming all goes well, this summer will inaugurate Touch the Future (TTF)'s first annual Hands On AT Summer Camp! The camp is taking place July 29th to August 2nd in Anderson, SC, and is designed to serve special educators and therapists who work within three local county school districts. "It's exciting," notes Touch the Future Executive Director Sandy Hanebrink, "our camp will provide national-level quality AT training in a grassroots way."
 
TTF began as Georgia's first statewide AT conference in 1989 and has since evolved and grown to provide computer, AT, and durable medical equipment reuse; AT services and products; as well as adapted athletic and fitness opportunities. A former statewide AT Act program, today TTF is a nonprofit serving individuals with disabilities, individuals from disadvantaged communities, seniors, and Veterans throughout the southeastern United States.

Hanebrink came up with the AT Summer Camp idea after an overwhelming response to the one-day affair TTF hosted in partnership with Anderson University last year. This year she's had over 50 inquiries for just 24 slots, and all through word of mouth (so far). "We're looking at space to see if we can expand," she says, "but keep it small enough to allow for hands-on and time for questions."  The schedule of offerings has yet to be posted, so the community's enthusiasm is noteworthy. "We're definitely addressing a real need."
 
Hands On AT Camp will provide in-depth workshops by area AT vendors, AT specialists, as well as local university programs. The cost will be just $250 for the full week (30 CEUs) or there's a $60/day (6 CEU) option. Workshop topics will be based on inquiries TTF has received throughout the year, on licensing already in place in the school districts (so educators can learn how to use what has already been purchased), and the availability of trainers. TTF is targeting three local school districts to encourage and help create a networking community of practitioners, and to provide them with ongoing support.

Hanebrink notes that Hands On AT Camp is part of TTF's larger year-round effort to expand opportunities to earn CEUs on the local level and for area specialists to offer trainings and provide assessments. "We're really excited about the expansion of this service at Touch the Future."
 

Find a Camp, List a Camp!
Graphic of a compass.


Directory of recreation programs, including camps, state by state

National Dissemination Center for Children with Disabilities
Camp directory page

Directory of camps and programs for special needs

Camp resources for special needs including funding advice. (Updated 05/16/13!)
 


AT Integration at Camp Sunnyside


Photo of two men on lake shore wearing life vests and one in a pirate hat with play sword, arms in the air, and paddle boats behind them.
Pirate time!

Jane Gay, Executive Director of Iowa Program for Assistive Technology, writes ATPN:

"After a week of memory makers at Iowa Easter Seals’ Camp Sunnyside, located outside of Des Moines, campers greet their parents and parents get a chance to visit the state AT Demo Center based right at the camp. The Iowa Program for Assistive Technology funds the Iowa Easter Seals AT Demo Center which focuses on  AT for living independently by all ages and also has a special section with AT for children who have Autism.  
Photo of a tree house.
Tree house!
 
Over 1000 adult and child campers are served every summer which means their families can see and try out AT for their growing child’s needs. Of course campers experience AT for recreation and sports at the camp, but having the AT Demo Center open when parents pick up their campers means that  parents can think about AT which would increase their child’s recreation and independent living back at home. This is just one more way that the Iowa Program for Assistive Technology and Iowa Easter Seals partner to increase access and acquisition of AT in Iowa." 
 
More about Camp Sunnyside:
  • Located on 88 acres, the camp was designed and built over 50 years ago specifically for providing recreation opportunities to campers of all abilities.
  • Houses a year-round fully-accessible aquatics center.
  • Offers themed weeks of residential summer camp (in addition to day camp and year-round respite weekends).
  • Archery, nature trails, talent shows, fishing, dances, canoeing, pontooning, a climbing wall, and tree house!
Learn more at the
Easter Seals Camp Sunnyside Web page

Georgia's IDEAS Conference/Expo:
A Professional AT Event with the Camp Spirit at Heart


by Carolyn Phillips, Director, Tools for Life (GA's Assistive Technology Act program)

Photo of sunset over the ocean with palm trees.
 
Under the Spanish moss covered trees, by the Frederica River, we have gathered in the first days of June for the past 23 years. Our objective? To teach and learn about assistive technology (AT) and effective ways to help students achieve their academic goals. The Georgia Department of Education’s Division for Special Education Services and Supports started this refreshing and effective conference on St Simon's Island (off the coast of Georgia) in 1990. The first gathering had just a few participants. It has since evolved into a highly anticipated conference and expo, last year attracting 586 participants and 28 exhibitors for more than 120 sessions! 
 
Tools for Life's role has evolved from a presenter/participant organization to a full-fledged partner in what we now call our Institute Designed for Educating All Students (IDEAS) Conference & Expo. This year, Tools for Life, with the Division for Special Education Services and Supports of the Georgia Department of Education, has joined forces with the Georgia Council for Exceptional Children, and the Georgia Sensory Assistance Project to produce the upcoming IDEAS Conference & Expo (June 3-6th). 

The event has expanded from focusing exclusively on AT to blending a wide range of topics, all centered on  providing educators, parents, students and other interested individuals with an opportunity to learn about effective educational practices and strategies for teaching all students. This year's topic areas include: Assistive Technology & Accessibility; Behavior & Classroom Management; Common Core & UDL Integration; Educational Strategies & Instructional Technology; Parent & Family Engagement; Policies, Procedures, & Practices; Sensory Impairment, and Transition.
 
In recent years, Tools for Life has taken advantage of this venue to provide training on apps and tablets, among other topics. These relatively new technologies are revolutionizing AT, promoting more independence, increasing opportunities for inclusion, assisting depth of learning, and providing equal access in educational settings. Here we  discuss face-to-face what AT, tablet and app solutions are working and how to best implement these effectively into the educational environment. This year, Liz Persaud and I will be offering "Our Favorite Apps: Promoting Successful Transition." In addition, "Understanding Apps and Tablets Accessibility: Back to the Basics" will be offered by Liz Persaud and Martha Rust.

Learn more about the IDEAS conference at this GA Dept. of Education Web page.

Nifty Product: the TrailRider!


Going on 30 years ago, Eliza Anderson and TA Loeffler were teenagers working together at a summer camp in Vermont. Reconnected through Facebook, Anderson (ATPN's Editor-in-Chief) learned TA is now Dr. TA Loeffler, Professor of Outdoor Recreation at Memorial University of Newfoundland (never underestimate the transformative power of a great summer camp!)  In March, Anderson noticed Prof. Loeffler's Facebooked enthusiasm for a new purchase made by her program (the School of Human Kinetics and Recreation):  the TrailRider. 
 
Photo of a TrailRider with logo in the corner. This looks like techy lawn chair with a single wheel and handles for pushing and pulling.
 
"I'm very excited for the possibilities in partnerships, teaching, and community engagement!" Loeffler wrote. 
 
Loeffler regularly summits peaks all over the world. In Nepal (where FB shows she is this month) it is not uncommon to see men carrying elders in chairs strapped to their backs. The TrailRider, by contrast, allows on-the-ground trail access with an adjustable ergonomic design.
 
Photo of a smiling woman seated in the TrailRider, in a sleeping bag, with three attendants, on a trial with water behind them.
Loeffler (in green) and others from the School of Human Kinetics and Recreation take the TrailRider for a spin.

TrailRider features include:
  • Single-wheel design with pneumatic tire that easily negotiates narrow trails and rolls smoothly over all terrain.
  • Lightweight aluminum frame that is strong and easy to transport (it folds!)
  • Ergonomic design with fully adjustable seating, footrest and armrests for comfort for riders and attendants.
  • Disc braking system for safety and reliability.
  • Cargo compartment for holding equipment and hiking gear.
  • Quick release pins make seating adjustments and transport easy.
  • Optional seatback insert for kids.
  • Powder coated for a durable finish.
"We have some students in the recreation program with disabilities or limited mobility and we have a few required courses in outdoor recreation," Loeffler observes (at this Memorial University Web page). "The TrailRider means that those students will now have access to those class activities such as hiking and wilderness camping."  The School for Human Kinetics and Recreation won't be hoarding their TrailRider all to themselves, either. "We don't want it sitting idle," she says, and indicates she has plans to loan it out to Easter Seals and others. 

TrailRider was developed in Canada and so far it’s been to the floor of the Grand Canyon, the summit of Kilmanjaro, Everest Base Camp, a bunch of New Zealand mountaintops and traveled along Canada’s West Coast Trail. Thanks to old summer camp connections (and Facebook!) it now finds its way to AT Program News. Spread the word!
 
Learn more at the Kawak Access Web site.

Reminder: AT Program News 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. AT Program News has not examined, reviewed, or tested any product or device referred herein.

ATinNH's iPad Summer Boot Camp

Graphic showing an iPad against camouflage with the words "iPad boot camp."

Here's another approach to camp: four days of intensive iPad training as assistive technology (AT)!

iPad Boot Camp will take place in Concord, New Hampshire from August 12th-15th, 2013. This is an opportunity for hands-on training with popular workshop presenter Therese Willkomm, Ph.D., ATP, who also directs the New Hampshire Assistive Technology Act program: ATinNH. Attendees will range from educators and assistive technology professionals to therapists, rehabilitation engineers, and lay persons. 

Photo of Dr. Willkomm smiling with an iPads mounted on stands, including one displaying a photo of her smiling face above an empty polo shirt.
Dr. Willkomm at a recent iPad Boot Camp event demonstrating her "virtual student" constructed with an iPad and homemade mount.

The schedule includes an overview day of the iPad, a make-and-take fabrication day for adapting the device for individuals with disabilities, a day of learning about apps for educational success, and a day of learning about the iPad as AT for aging. Learn more at this Institute on Disability/UCED UNH Web page.

Dr. Willkomm is the author of AT Solutions in Minutes, her celebrated "how-to" book for fabricating low cost AT solutions for home, school, work and play. And just out this spring comes AT Solutions in Minutes Book II: Ordinary Items, Extraordinary Solutions which includes a DVD of 115 instructional video clips and an XML copy with picture descriptions! Thanks to a Grant from the Gibney Foundation, all of the proceeds of this book will fund assistive technology devices for ATinNH device loan and demonstrations. Learn more and/or place an order at this IOD Bookstore Web page
Copyright © 2013 AT Program News, All rights reserved.
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