Help Jon and Maudey Advocate at AOTA Conference
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Dear Supporters and Friends,
We are excited to announce that Galilee OT, with Jon and Maudey, as disability self advocates will present the workshop, "Experiences of Using Assisted Communication Among Individuals with Complex Communication Needs," at the National conference for AOTA-American Occupational Therapy Association, this March 23rd in Orlando Florida. While this is a tremendous honor, both Jon and Maudey need our community’s support to afford the expenses of traveling with their caregivers to present. ( See itemized costs below)
Let me introduce you to Jon and Maudey, remarkable individuals who have dedicated themselves to being advocates for the disability community. This event is a crucial moment for them, and the non-speaking community.
Their experiences at AOTA can have a far-reaching impact on helping the world of therapists access important tools for their profession, while also giving an opportunity to non-speakers to have improved access to these impactful services. It is an honor that this presentation was chosen out of thousands of submissions to present at this conference attended by approximately 8000 OT professionals from around the country.
Jon and Maudey are 18 years old and their story ispires me each day. They each learned to communicate through typing using Assistive Technology four years ago, challenging initial misdiagnoses of severe intellectual delay. Now, reassessed as highly gifted individuals, their lives have irreversibly shifted. Jon’s recent words capture the essence of this transformation.
“I was intelligent even when no one knew yet. Each time I thought about awesome awareness, I wanted people to understand what was going on in my head, but instead, I answered myself. I was alone in this world. Understand that was the way for many years. I am finally feeling that, treasured testimony to you all, I am each day understood. That is really the fundamental truth to the way my essential humanity needs understanding.” - Jon Polanco
Jon's journey, as beautifully expressed in his words, reflects the profound impact Text Based Assistive Technology has had on his life. Maudey recently shared the following during a peer group experience at Abilis STeP program:
“I feel hopeful that I will be seen and valued as an important person with special gifts who is capable of many things. What makes us autistic is also what makes us special. The special part is autistic”-Maudey Lockwood
Your support can help Jon and Maudey continue to share their story and valuable insights at the AOTA Inspire 2024 National Conference.
Itemized Cost Description: These families are passionate and dedicated to allowing their children to thrive and fulfill their dreams. However, they have many personal costs and need our help to make Maudey and Jon’s dreams of being advocates a reality.
- Airfare for Jon and Maudey and their amazing caregivers. Maudey's mom Loren is a trained text based communication partner for Maudey and practitioner in her own right. Loren is also undergoing cancer treatment at the moment but is passionate about allowing Maudey to fulfill her dream of being a self advocate for the disability community and therefore is taking this trip between Chemotherapy bi-weekly treatments! Christine, Jon's Mom is a trained communication partner for Jon and in training to become a typing coach. Joey, Jon's step-dad is an essential support for all travel, whether it be a ride to a doctors appointment, or this flight to FL.
- Cost of transportation from airport to hotels and from hotels to conference.
- Cost of hotel room in Orlando (they have chosen a modest hotel not attached to the conference site.)
- Cost of food for the time they are traveling. Leaving Friday morning, presenting on Saturday, and returning on Sunday. (2 nights/three days)
Who We Are:
Galilee Damiao, MS OTR/L, Occupational Therapist (OT), Text-Based Assistive Technology practitioner. Stay tuned to hear more about the advocacy organization called SEEN Foundation (Self Expression EducatioN Foundation) that Galilee is starting up. SEEN Foundation aims to provide a variety of opportunities for individuals to advocate for the disability community with a commitment to fostering inclusivity. We are grateful to our community as it has been able to kick start the donations with $400.00, which was received from profits from last year's Film Screening Q&A about Text Based Assistive Technology that went into an advocacy fund. This advocacy fund is now being used and we will continue to provide a variety of opportunities for advocacy through SEEN Foundation.
We're thankful for our collaborators in these efforts:
- PACE University for their support in authoring research and participating on our presentation team. Research published in AJOT Dec 2023 Titled: Parent Perspectives on Assisted Communication and Autism Spectrum Disorder (See link: Research Link)
- Dominican University for their support in authoring research.
- Special thanks to Abilis STeP Supported Typing Program for their ongoing support of Jon and Maudey with their training, coaching and social groups and Galilee as a practitioner.
- Special thanks to Jennifer Terranova MA, OTR/L team member and Text Based Practioner.
- A heartfelt special thanks to families and individuals who communicate in alternative ways for their strength, determination and for inspiring and teaching us each day.
How You Can Make a Difference
We're immensely grateful for the support of our community, and we're reaching out to you for help. Any amount you can contribute will make a significant impact. Thank you in advance for being a crucial part of this important mission.
It would be a treat to see you at the AOTA Conference (AOTA INSPIRE | 2024 Annual Conference & Expo
With warm regards and immense gratitude,
Galilee Damiao, MS OTR/L
SEEN Foundation and team
Link to AOTA inspire conference site AOTA INSPIRE | 2024 Annual Conference & Expo
Organizer
GALILEE DAMIAO
Organizer
Spring Valley, NY