by Jo Booth
On Friday, July 28th, I had the good fortune to be able to attend a training sponsored by the Adaptive Design Association Inc. in New York City. Through a grant, the Adaptive Design Assoc. hosted a training for designers, therapists, and skilled craftsmen from the Philadelphia region on the construction of adaptive equipment for people of all abilities. Gratefully, EasterSeals of SEPA was well represented! The goal was to spread both techniques for making products as well as to set up pockets for collaborators to continue this important work by consulting and constructing items of need within their home communities. It doesn’t really matter what “the norm” is, as we all have needs and will most probably require an adaptation at some point in our lives. You see, sometimes it may be to change the angle or view for an individual so that they can complete their work, provide postural support, or be able to complete daily routines or activities of daily living by changing the structure up a bit. If you begin to presume competence in others, you may find yourself pleasantly surprised by what a person is indeed capable of doing or understanding.
The Adaptive Design Assoc. was founded by the vision of Alex Truesdale so that the designs and their construction could improve the quality of life for individuals to simply function within their environment. ALL items are customized for EVERY CLIENT and can be made from simple tools and construction materials. Many of the adaptations were made from tri-ply cardboard, glue, and “wooden nails”. The lifespan of the adaptive devices made from these simple but humble materials far outlasted many commercial materials, and in fact, many could be adapted quickly as a person’s needs changed rather than purchasing new equipment altogether. Alex in her overview of her life’s work described the unique relationship between the designers, creators, and clients. She stated that this relationship was the ground or heart of the creative process. When pieces were made from mutual respect, open communication, and yes – love; they could address the needs of the client in a more organic and direct manner. One of my favorite pieces was a stairway to assist a child in independently getting in and out of his wheelchair painted in a Spiderman motif that was totally awesome! When viewing pictures of the designs from the past, it was fascinating to see that what stood out was the individual, and not the design itself. The technology had simply fallen away from view. The Motto for this community of makers is: “Build for One, Engage Everybody, Change Everything™” . At ADA, anything is possible.
Participating with the Adaptive Design Association
The ADA encourages active participation from all as they believe that by using many hands, no detail goes unnoticed. Improvements spontaneously arise from collaborative efforts. The ADA offers many opportunities for learning and involvement. Visiting their website is not only inspirational but also a source for people to learn – tutorials on the process of making adaptations are offered on the website. Workshops, intern positions, and opportunities to volunteer are all ways to become involved and so that you can make a difference in your community. Over the next few months, I hope to show you in more detail, the process of learning to fabricate adaptations that are made with cardboard.
by Adrienne Young
It has been four years since the Bucks Division started on the Positive Behavior Interventions and Supports (PBIS) journey to improve the quality of our programs and to bring staff, parents and children together as a team through “positive possibilities.”
This year, we submitted our Benchmarks of Quality, stating that we are providing the proper strategies and supports to staff, children and families related to our behavioral expectations. In May, we were recognized for fidelity by the Pennsylvania Positive Behavior Support Network in Hershey and received a banner that is proudly hanging up in our vestibule. Thanks to all of the parents, staff, from the administrative staff, the classroom staff, therapists, nurses, the coaches, the Core Leadership Team, Mr. Dan, our music therapist and our amazing Facilitator, Meghan von der Embse. And an extra special thanks to Janet Rubien, our former Director of Programs – she was there with us from the start, cheering us on and brainstorming with us as a member of the Core Leadership Team.
PBIS fidelity could not have happened without the team working together and I am so proud to be a part this amazing group!
by Janet Rubien
The Alliance of Approved Private Schools was honored to host Secretary of Education Pedro Rivera, on Thursday May 18th. During the visit, Mr. Rivera toured the Easter Seals Schools in Philadelphia, a school that serves students with profound needs. While stopping in classrooms Mr. Rivera had the opportunity to interact with students, and participate in classroom activities.
After the tour, Mr. Rivera met with members of the Alliance of Approved Private Schools to discuss initiatives from the Pennsylvania Department of Education (PDE). Mr. Rivera addressed PDE’s commitment and efforts to address Teacher Shortages, Funding, and creating environments where all students can grow to their full potential. Mr. Rivera spoke passionately about protecting and meeting the needs of Special Education children. The Alliance of Approved Private Schools, Mr. Rivera, and PDE are looking forward to working together to help children across the Commonwealth of Pennsylvania.
by Sandy Masayko
Parent Laura Murphy and Easter Seals staff members Melissa Spada, Sandy Masayko and Joy McGowan (pictured in the photo) presented information about eye gaze technology for young children at the 41st Annual Children’s Hospital of Philadelphia Developmental Disabilities Conference on May 12, 2017.
Laura gave a parent’s perspective on how using eye gaze technology promotes her daughter’s participation in an inclusive public educational program as well as in her family life. Over the years Laura has seen her daughter Sara progress from using just a few symbols, to phrases, to a system with over 100 locations on the screen and the ability to use spelling and word prediction to write and communicate using a computer.
Melissa, Joy and Sandy have presented information on eye gaze technology previously, but the presentation is evolving as they work with more children and add children to their study. Including a parent in the presentation added a valuable long term perspective to consideration of eye gaze technology and how students can progress with this technology.
by Sandy Masayko
With support from a grant from the Christopher & Dana Reeve Foundation, Temple University’s Institute on Disabilities has partnered with the Adaptive Design Association and community agencies in fabrication of adaptive equipment (seats, slant boards, wheel chair trays, mobility devices, etc.) from tri-wall cardboard. Easter Seals supported the grant and is very pleased that three of our staff members are participating in the program.
Assistive Technology Specialist Laurie G. McGowan and Occupational Therapist Adrienne Krysiuk traveled to New York City in March for a one day introduction to the processes of making adaptive equipment. Cathleen Thompson, Occupational Therapist, completed the introductory training on another day. Now the three Easter Seals staff members are ready to participate in six additional training days in May and June to become expert at using this low cost material to fabricate adaptive equipment. The May and June sessions will take place at Philadelphia Woodworks in Manayunk.
We will have the opportunity to train another team in the summer.
From left: Rochelle Mendonca, Temple University Occupational Therapy Program, Deb DeVito, Elwyn and Laurie G. McGowan of Easter Seals worked together to learn how to assemble triwall into a seat.
Adrienne Krysiuk checking out the Tippy Chair that she created with her team
Example of a customized and personalized chair made by a team at the Adaptive Design Association.
For more information about the Adaptive Design Association, visit http://www.adaptivedesign.org/
by Sandy Masayko
This is the fourth post in a series of post from Sandy’s visit to Australia
Exploring the farm is part of the fun of living there. But for an 11-year-old boy who was being jostled about in his chair because the standard wheels on his current chair are not designed for uneven terrain, exploration was not so much fun and not really safe. Adapting the power wheelchair so that his young client can drive all around the dirt roads on his family’s farm was the focus of Northcott OT Santheesh Thiruchelvam’s day on Feb. 15. We accompanied Santheesh on a one-hour drive into the country to meet with his young client and the boy’s family.
Santheesh had arranged for a vendor for an Australian wheelchair company, Glide, to bring wheelchairs with wider tires out to the farm for some test drives. As soon as he was in the new chair, the boy took off down a dirt road, turned around and returned with a grin on his face. He really liked the smoother ride on the larger tires. Next challenge was driving into his parent’s van. This test revealed that the tires were too large for van entry. Next trial was with a chair fitted with slightly more narrow tires. The second trial proved that with the narrow tires chair could go up the ramp.
OT Santheesh Thiruchelvam supervises his client’s trial with a power wheel chair adapted with wide tires for uneven terrain.
Although the tires on this wheelchair proved to be too wide for the child to drive into his parents’ van, when he tried another chair with more narrow tires the child was successful. His OT, father and Cristen Reat of Easterseals Houston look on.
After returning to Northcott, we met with Tara Ozturk who is an Accommodations Services Manager. She oversees the operations of several community living arrangements where folks can live in their own apartments, in shared or independent housing. Support is given as needed from the workers on staff according to the plan developed with the customers. We visited an accessible garden apartment complex where 12 people live in 8 apartments with some common space for barbecues, gardens and meetings. Residents proudly showed us their apartments. Northcott has a network of housing and supported independent living services throughout the area, giving people with disabilities choices in housing.
Tara Ozturk, Cristen Reat, a Support Worker and Sandy Masayko chatted in the garden courtyard of a shared housing apartment complex.
Read the first post here, the second here and the third here.
by Sandy Masayko
This is the second post in a series Sandy will be doing from Australia
After traveling for about 30 hours I landed in Sydney on Friday morning, made it through customs, and I am now enjoying hot summer weather and a little culture shock. The culture is not shocking in big ways: everyone speaks English, of course, and the people are a diverse group like you’d see in an American city. People are friendly and polite. But the sound of the language is different, the spelling too, as well as some vocabulary.
ATMs are everywhere so it’s easy to get cash just like in the states. The money is organized in a dollar system with the paper bills increasing in size to reflect greater values. There are no paper dollars, instead one and two dollar coins. Pennies have been eliminated. The smallest coin is 5 cents. Payment amounts are rounded up or down to deal with the missing pennies. Right now the Australian dollar is worth about $0.75 US, so I mentally calculate percentages to see what things “really” cost.
Since I am here to look at issues around disability, I decided to test out accessibility on public transportation by lugging my 40-pound suitcase, duffel bag and backpack on the train from the airport. (Normally I travel much lighter, but I am bringing books for my Australian colleagues.) Despite my burdens, it was easy to travel on the train from the airport and change to another line because of the “lifts” (known in the US as elevators), curb cuts and seating set aside for people with special needs: age, disability, or other issue. The biggest accessibility challenge was getting up to my hotel, located on a hill in North Sydney with 12 steps leading up to the entrance. As I hauled the suitcase up the steps an Australian woman my age came to my rescue to assist me.
The next few days are vacation for me, and a chance to catch up with my son, who lives in Sydney. I will travel to a section of Sydney called Parramatta on Sunday to be close to Northcott, the first center I will be visiting in Australia.