December

Celebrating with Family & Friends

Cover photo: Rick Guidotti and POSITIVE EXPOSURE

December Feature

MEET THE AMAZING SARAH

Sarah loves to dance and starred in the Positive Exposure FRAME Film: Cerebral Palsy in FRAME (Created with support from the With Foundation).

FRAME (Faces Redefining the Art of Medical Genetics) is a web-based film library of short documentaries that offer a more humanized understanding of medical conditions and critical health topics. 

Visit: Cerebral Palsy in FRAME 

Helen Journal Helen Journal

Making College Educational Opportunities Real for Those With IDD in Southeast TN

Dreams and Aspirations for the Birth of the Program: Imagine an inclusive collegiate environment where neurodiverse individuals could learn skills that would translate into a Certificate of Completion and real job skills to help them in their future career endeavors. Chattanooga State Community College (ChSCC) in southeastern Tennessee has developed such a program, Tiger Access, for students who have intellectual and developmental disabilities.

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The Complexity of Pain and the Person With Autism

Troy Krombholz: “I have had to learn, over the years, to be content with the simplicity of my cognitive abilities. So, trying to discuss the topic of pain and the autistic person successfully, for me, is like trying to take the book War and Peace and pack it into a sardine can. But I will not be afraid to endeavor to do so, because every bit of discussion on this topic is highly beneficial to say the least.”

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FAMILY VOICES Resources

RESOURCES: FAMILY VOICES is a family-led organization that transforms systems of care to work better for all children and youth, especially those with special health care needs or disabilities. By putting families at the forefront and centering their leadership and lived expertise, we build a culture that includes everyone and fosters equitable outcomes.

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MORE FROM THE STACKS

ANCOR Issues Findings from 2024 State of America's Direct Support Workforce Crisis Survey: “This fall, in our continued effort to better understand how providers navigate long-term shortages of qualified direct support professionals (DSPs), ANCOR fielded our fifth annual survey of community-based providers of intellectual and developmental (I/DD) services.”

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ANNIE’S PAGE

Craig Escudé, MD, FAAFP, FAADM on the Annie Sullivan’s League honoree: “Michael Hayes may march to the beat of his own drum in this field, but he takes it a step further by showing others how to do the same thing. Mike has dedicated his life to empowering others through the arts, particularly in the field of intellectual and developmental disabilities. His journey began in 1970, during his senior year at Scott High School in Toledo, Ohio, when he became involved in a program that brought music, theater, and art to underserved housing projects. His approach was always centered on the idea that there are no limits, only different paths to success.”

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PAOH President’s Letter: Advocating for Optimal Health

Steven Perlman, DDS, MScD, DHL (hon), PAOH President: “For this month’s President’s Message, I am sharing with you the frustrations and roadblocks that are faced when you are trying to solve a problem for people with disabilities that you know “is just not right.” I apologize for the lengthiness of this message, but I want the HELEN Journal  readers to appreciate our efforts…As President of People Advocating for Optimal Health (PAOH), I have been tasked with identifying barriers to healthcare for people with disabilities, to raise awareness of these barriers, and to collaborate with others to find a solution for the problems.”

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On Knowing More Than We Know

Rick Rader, MD, FAAIDD, FAADM, Editor-in-chief, Helen Journal : “According to Service Pup Solutions, an organization dedicated to advocating for service animals, “The concept of service dogs is not a modern invention. Historical evidence suggests that the use of dogs for assistance dates back to ancient times. In Roman literature, there are accounts of dogs guiding the visually impaired, and artifacts from various ancient cultures depict dogs in roles that closely resemble those of modern service animals.”

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Saint Francis Service Dogs: Enhancing Independence for People with Disabilities

Dr. David Cox: In a world increasingly dominated by technology and innovative approaches to fostering independence for individuals with disabilities, one traditional method remains both effective and popular: the use of service dogs. These highly trained animals provide invaluable support to their handlers, allowing them to achieve greater autonomy in daily life. As defined by the Americans with Disabilities Act (ADA), service dogs are considered working animals, not pets.

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Unlocking Behaviors: Auditory Hallucinations

Ley Linder, MA, M. Ed, BCBA and Craig Escudé, MD, FAAFP, FAADM: “Shanda is a 39-year-old woman with a mild intellectual disability who is an effective communicator, expressively and receptively. She lives with three other women of similar functioning ability and has held various jobs working in restaurants and other businesses providing light janitorial services. She is a gregarious woman with robust social systems, including family, friends, romantic relationships, and the support staff at her group home. She has psychiatric diagnoses of depression and anxiety, for which she takes citalopram and lorazepam. “

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Special Olympics Promotes Hand Washing for All

Personal hygiene begins and ends with our hands. And though we are taught as youngsters to wash our hands before dinner, it’s important to remember that germs don’t care what time of day it is. Clean hands prevent sickness. So it is especially important to learn the basics about hand hygiene so that you, too, can become a champion hand washer! Let’s examine some handy  tips and info in honor of National Handwashing Awareness Week, which takes place each year during the first full week of December.

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Migrating from #Disability Twitter to #DisSky

We’re leaving Twitter. Since 2022, accessibility on the platform has been dismantled as part of a broader set of cuts, turning the platform away from recent gains. The Accessibility Experience Team was eliminated in November 2022. This happened just after the launch, two months prior of expanded alt-text features on the site, championed as a needed feature for blind and low-vision users. Voice Tweets, color contrast tools, audio captions, and motion effect toggles on animations had also become available since 2020 as part of a broader suite of accessibility settings.

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FROM THE STACKS

The Institute for Community Inclusion:With great sorrow, we share with you the news that Psychiatrist Emeritus Dr. Ludwik Stefan Szymanski passed away peacefully in his home at the age of 92 on November 22, 2024.” Dr. Szymanski was a cofounder of the Developmental Evaluation Clinic (DEC) with Dr. Allen C. Crocker, which we know today as the Institute for Community Inclusion (ICI) at UMass Boston and Boston Children’s Hospital (BCH). He advocated for families and children, exploring and improving health and social outcomes for children with developmental disabilities at BCH.

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