Category Archives: Community Partners

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!!!

 

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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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.

ADA team 2

 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 ADA

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

ADA chair

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/

Last Day in Australia

by Sandy Masayko

This is the final post from Australia and Sandy’s exploration and sharing of assistive technology

1332 stairs! That’s how many stairs my son and I climbed today on the Harbour Bridge Climb. It was a wonderful way to end my study tour in Australia: I now have the broad view of Australian services for people with disabilities! I treasure my many new acquaintances and I’ve seen a wide range of programs that have made me think about how we can adapt some of our programs in Pennsylvania.

  • Thank you to the National Office of Easterseals for selecting me for the study tour.
  • Thank you to Easterseals of SEPA for supporting my trip.
  • And thanks most of all to the hosts during my trip: Northcott, Rocky Bay and Ability Centre, affiliates of Ability First Australia.
bridge-climb-w-matt

Special thanks to Northcott for the gift of the Bridge Climb passes.

3-3-17harbour-bridge

The Harbour Bridge is 134 meters (440 feet) high. We climbed through intermittent rain today for beautiful views of Sydney.

Sandy has shared her journey through a series of blog posts. You can read the first one here, the second here, the third here, the fourth here, the fifth here, the sixth here, the seventh here, the eighth here, the ninth here and the tenth here.

Finishing Up My Study Tour at Ability Centre in Perth

by Sandy Masayko

This is the tenth post in a series about assistive technology in Australia.

Ability Centre, as with the other two sites I visited, provides an extensive array of services for people with disabilities. My last day on my study tour included learning about a mix of supportive services: CP Tech, a workshop that constructs customized adapted equipment; Goodwill Engineering, an industrial workshop that employs people with disabilities; a meeting with Scott Langmead, a seating specialist in mobility for young children; and a meeting with Hillary Brand, principal of Sir David Brand School, an independent school that serves children with multiple disabilities. The school is not a part of Ability Centre, but the therapy services are provided by Ability Centre.

fraser-w-drill

Fraser Clarke showed me a computer-controlled drill that can form customized seating from a block of foam at CP Tech.

I climbed up into Fraser Clarke’s SUV for the 15 minute drive to Malaga, north of the Ability Centre’s location, where both CP Tech and Goodwill Engineering are housed in an industrial site. Fraser guided me on a tour of CP Tech, a facility that can fabricate all kinds of adapted equipment and seating. I saw a computer-controlled drill that is capable of forming a customized wheelchair cushion from a block of foam as well as the upholstery workshop and wheelchair repair stations. Goodwill Engineering is attached to CP Tech and looks like any factory although when you look closely you can see many people in wheelchairs at their workstations. The company produces building supplies such as the wires that stabilize brick walls.

goodwill-engineering

Goodwill Engineering is an industrial site run by Ability Centre that provides employment for people with disabilities.

Back at Ability Centre, I met with Scott Langmead and learned about his development of the Ability Centre’s Wizzy Bug fleet through grant funding. Scott came up with the idea to obtain the little powerchairs after taking a worldwide study tour several years ago and learning about these mobility devices on his trip. Scott has offered to share his paper describing his visits with mobility and seating experts from around the world. I shared some of our Go Baby Go resources with him.

My final visit was to the Sir David Brand School adjacent to the Ability Centre, but not a part of the Centre. Principal Hillary Palmer met with me and gave me a tour of the facilities. We enjoyed comparing and contrasting educational practices of Australia and the US. It seems that parents in Australia are less litigious than parents can be in the US. The school is identified as an independent school, similar to our charter schools in Pennsylvania. It is exclusively for students with multiple disabilities. Contracting with the Ability Centre for therapy services gives the school consistency in therapy staff, unlike some other schools that rely on numerous contractors.

maria-white

OT Maria White arranged for me to meet at the Ability Centre with a group of therapists interested in eye gaze technology for young children.

Two weeks can fly by. And that is what has happened with my study tour. It’s been an intense two weeks to meet so many generous people carrying out an amazing array of programs. I am very thankful to Easterseals National Office and Southeastern Pennsylvania for this opportunity. I would especially like to thank Maria White, Scott Langmead, Fraser Clarke, Catherine Greenway and Suzie Cowcher at the Ability Centre for the program that they arranged for me in the past two days, and I’d like to thank the clients for sharing their programs with me also. I hope that we will be able to keep in touch to continue to exchange ideas about programs to support people with disabilities

If you would like to read Sandy’s previous posts, you can find the first one here, the second here, the third here, the fourth here, the fifth here, the sixth here, the seventh here, the eighth here and the ninth here.