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Bringing the Family’s Voice to Research: How Families Contribute to Research (Part Two)

by: Lisa Diller, Seattle, Washington, Paula Drew, Edmond, Oklahoma, Marquitha Gilbert, Philadelphia, Pennsylvania, Nancy Ford, Atlanta, Georgia, tina hjorngaard, Toronto, Ontario, Canada, Kim Rayfield, Philadelphia, Pennsylvania, Barbara Taylor, Pittsburgh, Pennsylvania This is the second of a two-part article about our experiences as parent members of the On-Track Study research team. In this article we reflect on how our engagement in the research process evolved over four years and about the benefits of including parents as members […]

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Improving Health Worldwide To The Most Underserved

People with intellectual disabilities face health care providers who don’t have the knowledge or willingness to treat them. Despite severe need and higher health risks, people with ID are often denied health services. BY KRISTIN HUGHES SROUR, MBA If you want to help straighten her bones, dig a hole in the ground, have your daughter stand in it and then pack it with soil. Do this every day for six hours. This was the advice […]

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Bringing the Family’s Voice to Research: Parents as Members of the Research Team (Part One)

  By: Lisa Diller, Seattle, Washington; Paula Drew, Edmond, Oklahoma; Marquitha Gilbert, Philadelphia, Pennsylvania; Nancy Ford, Atlanta, Georgia; Tina Hjorngaard, Toronto, Ontario, Canada; Kim Rayfield, Philadelphia, Pennsylvania; Barbara Taylor, Pittsburgh, Pennsylvania “Nothing About Us Without Us!” is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy.” It has been embraced by the disability community for […]

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Anyone Can Sleep in the Top Bunk!

BY LAURA WHITAKER In 2014, Extra Special People (ESP) officially became the proud owner of 70 acres of beautiful, empty land in northeast Georgia – and Camp Hooray, a place where accessibility will be a foundational feature rather than a rushed afterthought, was one step closer to becoming a reality. Worried? Anxious? Not even close. If Toni Boyd could have described her emotions on the day she dropped off her daughter Samantha at summer camp […]

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STUDY: The Family Dog Could Help Boost Physical Activity For Kids With Disabilities

BY MICHELLE KLAMPE Researchers designed an adapted physical activity, animal-assisted intervention where the family dog would serve as a partner with the child in physical activities designed to help improve overall physical activity, motor skills and quality of life. The family dog could serve as a partner and ally in efforts to help children with disabilities incorporate more physical activity into their daily lives, a new study from Oregon State University indicates. In a case […]

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Breaking Barriers

BY GRACE NAH AND BRITTNEY NORRIS Recently Tobii Dynavox, a leader in assistive technology for communication, expanded their mission for improving the quality of life for even more people through a new device called Indi™. This first-ever direct-to-consumer speech tablet provides a communication solution for individuals of all ages with speech and language disabilities, including those with autism, Down syndrome, cerebral palsy, Rett syndrome and Intellectual disabilities. “We truly believe that everyone deserves and should […]

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Build A Better Relationship With A Disability

BY WILLIAM CHIU HALLDOR BJARNASON Chief Scout Award recipient, gold medal-winning Paralympian, Terry Fox Humanitarian Award recipient, community service award recipient from the BC branch of the Canadian Bar Association, cerebral palsy and disability advocate — those are just a few of the accomplishments in the life of Halldor Bjarnason. If you looked at his resume and tried to guess which one of his accolades he is most proud of, you may be surprised by […]

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Support for Families of Children with Cerebral Palsy

New Educational Program Launched by “Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy” Blazing New Trails™, a new educational initiative, launched recently to bring information and support to families impacted by cerebral palsy (CP). The goal of the program is to educate patients with CP and their families about the latest updates in overall management, physical and occupational therapies, and adaptive technologies that may help children living with CP and […]

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Miracle Babies

By all medical standards, I should not be sitting here writing this piece. My life was critical and fragile from the moment I exited the womb. Thanks to wonderful doctors and medical advances, I am here today to share with you a little about what I like to call my humble beginnings. As the sun pushed over the horizon on March 14, 1992, my twin and I pushed fighting breaths out of our lungs for […]

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Internships Ease Transition To Post-21 Life

BY RACHEL EZEKIEL-FISHBEIN Internships can pave the way for a more satisfying life with rich connections to community and meaningful experiences, and possibly employment. “Good morning. It’s nice to see you. I have a delivery for you. Would you like a newspaper?” asks Annie Kramer-Golinkoff, using head switches to access her Dynavox augmentative communication device. Annie maneuvers the hallways of JEVS’ Human Services’ administrative offices in downtown Philadelphia expertly with her power wheelchair, stopping at […]