family-voice-research-pcori-collage

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 […]

0001

Attention Caregivers: SSDI Benefits For Dependents With Special Needs May Not Last Forever!

Caregivers of dependents with special needs who receive Social Security Disability Income (SSDI) benefits must fully understand the nature, scope and duration of these benefits to effectively plan for the financial future of their dependent. When SSDI benefits are payable based on a parent’s working record to their adult dependent with special needs, the Social Security Administration (SSA) considers this type of benefit as a “child’s” benefit. It is this form of eligibility that this […]

003

On Learning That My Brain is Shrinking

ANCORA IMPARO BY RICK RADER, MD ■ EDITOR-IN-CHIEF I was quick to process and accept the news that my marinated tofu was shrinking. Doing crossword puzzles, listening to Mahler and navigating cornfield mazes was not going to curtail the shrinkage. My boat was dirty. It was the weekend; I would clean it. The plan was a “no brainer,” and I was soon to learn that the expression “no brainer” was an accurate description. Apparently it […]

holiday-gift-guide-2

Holiday Gift Guide

As the holiday season quickly approaches, caregivers and parents of children with special needs are considering what new toys, games and learning tools are appearing on the market and which of those might be a good fit for their child. To help families through their toy purchasing decisions, EP’s editors have compiled a selection of some new products as well as some classic choices, each of which offer fun ways to improve motor skills, balance, […]

on-track-team

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 […]

maria-blog-pic-june

Focus on the Beauty

My backyard is a complete disaster right now. My husband is in the process of re-vamping the landscaping and patio. It’s a long, grueling process for him. While the weeds are continuing to grow and multiply, it is difficult for me to remain patient and focus on what’s to come…I have been only able to see the overgrowth and weeds. Until yesterday. I was outside with our dog and noticed a tree that had blossoms […]

001

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 […]

001

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 […]

01

Perceptions of Self

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON) AND MATTHEW COOKE, DDS, MD, MPH “Prior to the twentieth century, social attitudes reflected the view that persons with disabilities were unhealthy, defective and deviant. For centuries, society as a whole treated these people as objects of fear and pity. The prevailing attitude was that such individuals were incapable of participating in or contributing […]

canvas

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 […]