Build, Engage, and Change with Adaptive Design Association Inc.

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.

About ADA

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.

8 a.m. Hot Dogs are Mission Critical for Walk With Me!

by Liz Graham

There are quite a few things that are absolutely critical to making Walk With Me successful – Ambassador families, volunteers, dedicated team captains, sponsors, donors and after one misstep I learned…HOT DOGS! I naïvely underestimated the importance of the 8 a.m. Hatfield Hot Dog one year; it is a lesson I did not need to learn twice. Easter Seals is so very lucky to have a longstanding community partner and corporate supporter in Hatfield Quality Meats. They have hosted golf outings, supported cause marketing campaigns, volunteered and of course donated hot dogs. Way back in 2008 I was managing my third Walk With Me event and planning was going well, until that fateful call from Steve Clemens in March. Hatfield Quality Meats had a company wide anniversary picnic the same day as Walk With Me and would be unable to attend. Generously they would still donate 2,000 hot dogs but would not be able to send their truck and grill set-up or be able to loan us their large outdoor event grill – everything would be in use at the picnic. I took a deep breath, considered how we could manage to cook 2,000 hot dogs on the Art Museum Steps and decided that logistically it wasn’t possible. We would have to find an alternative option for 2008.

I reached out to critical staff, volunteers and sponsors to get a consensus of what food items we could substitute for hot dogs – bagels, pretzels, snack bars, fruit…I actually thought I had come up with a reasonable plan to feed our participants at 8 a.m. on a Saturday morning in June.

And then there was mutiny.  I was wrong. There was adamant and unanimous feedback that we MUST have Hatfield Hot Dogs. How could I imagine Walk without them? What was I going to tell the lines of participants expecting their Hatfield Hot Dog? Did I want to ruin the event?!

So I called Steve Clemens, thanked him and Hatfield Quality Meats profusely for their generous donation and scheduled a pick-up of 2,000 hot dogs for two days before the event. How do you store 2,000 hot dogs for two days with no commercial refrigerator? Well I took some home, other staff took some home and we packed the two standard refrigerators at the office. Since the City of Philadelphia requires a special permit to use an outdoor flame we ordered electric hot dog rollers and got to work at 6 a.m. on the Art Museum steps. We never stood a chance. Hot dogs were cooked…SLOWLY. Hot dogs were consumed and enjoyed…RAPIDLY. Our food volunteers worked until they were completely exhausted. We had many comments that our participants enjoyed the event but it just wasn’t the same without Hatfield Quality Meats and the hot dog truck there. They missed Steve, Smiley and the staff that does the cooking.

After cleaning up the event, I got in my car and vowed to never host a Walk With Me event that Hatfield is unable to attend!

That year I learned just how strong of a partnership Hatfield Quality Meats and Easter Seals Walk With Me had formed. Our participants love and appreciate Hatfield’s participation, support and hot dogs. This partnership has continued to grow and strengthen, it has continued to add a vital component to Walk With Me through their donations of labor, food and love. But more so, this partnership continues to provide critical resources for the families we serve.

I so very much enjoy working with Hatfield Quality Meats and the Clemens Family Corporation. They are wonderful people with huge hearts and love of community. We are very lucky to call them friends and even luckier they know how to grill a mean dog!!!

 

There is No “I” in Team

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!

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Secretary of Education Visits Easter Seals

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.

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Looking forward to Walk With Me

by Eva Delmonte

Eva is 12-years-old and was a volunteer at last year’s Walk. Recently, she came in to volunteer on her day off from school to help get ready for this year’s event. While she was here, she had the opportunity to meet Mung, one of the Honorary Ambassadors. She also took a little time to write some of her memories from last year.

I absolutely enjoyed the Easter Seals event. It was very fun to be at the zoo. They even provided water, other refreshments and hotdogs! The best thing was walking around the zoo and seeing the animals, especially the giraffes! After the event I got to explore even more because you get all all day pass if you go to the Walk. I loved this event and if you come, I know that you will too!

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Eva and Mung

To register for Walk With Me, visit http://www.walkwithme.org/philadelphia

Easter Seals Presentation at CHOP Developmental Disabilities Conference

by Sandy Masayko

CHOP DD 5.12.17

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.

Easter Seals Joins Other Philly Agencies to Learn About Low Cost Adaptations

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.

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 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.

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Adrienne Krysiuk checking out the Tippy Chair that she created with her team

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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/