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Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities

National Council on Disability An independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families. Neglected for Too Long: Dental Care for People with Intellectual and Developmental Disabilities Fall 2017 This policy brief is designed to provide insight concerning the lack of dental care many people with intellectual and developmental disabilities (I/DD)[1] continue to experience due to a shortage of properly […]

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Transitions: Moving from pediatric care to adult care can be tricky. Here are eight questions to ask your doctor to facilitate the process.

American Academy of Neurology Kritz, Fran Neurology Now . 13(5):10–11, October/November 2017. Many neurologic diseases, such as epilepsy, spinal muscular atrophy, muscular dystrophy, or Down syndrome, begin in childhood when patients are seen by pediatric neurologists. What happens when these patients age into adulthood? Do they stay  “with their pediatric specialist or switch to a neurologist who treats adults or both children and adults? The accepted wisdom is to transition to doctors who treat adults, […]

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Mindful Awareness & The Healing Arts – A Therapy Paradigm Shift

BY JANICE K. RYAN, OTD, OTR/L How quickly can a television show change a culture? Has The Big Bang Theory altered societal perceptions, self-perceptions, and future possibilities for people with learning, cognitive or behavioral differences? It’s hard to believe that Sheldon Cooper and his diverse group of friends entered family living rooms over ten years ago. Kerry Magro, an Autism Speaks staff member and adult with autism, wrote about his feelings in a blog. He […]

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Disability PRIDE Why Disability Is Not A Bad Thing

Activists with disabilities recognized that we have a lot in common with other minorities, including civil rights, financial, education, and health disparities, a lack of role models, and under representation in the media and politics. BY KATHLEEN BOGART About 19% of Americans have some kind of disabling condition but most reject the label “disability.” As a reaction to the stigma surrounding the term “disability,” disability activists have started a disability pride movement. As a psychology […]

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Curing or Living with a Disability: Your Choice Would Be… (Commentaries)

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 “Everyone’s brain is different. Brains are like snow flakes – no two are alike.” 1 “There is tension within the disability community between curing the disability and living with the disability” 2 “…with Down syndrome, the general emphasis is to celebrate the strengths of the syndrome, whereas with […]

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Practice Without Pressure

BY DEBORAH JASTREBSKI Practice Without Pressure™ greatly reduces and, most times, eliminates the need for sedation and restraint. The PWP model includes the individual, the family/caregiver, and the clinician, and introduces the PWP practice specialist into the paradigm. THE NEED You wake up one morning and your tooth hurts. Although it’s not your favorite thing you call your dentist, make an appointment and go get it fixed. You’re nervous but you tell the dentist that, […]

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My Name Is Jackson Fukuda And I Have Arginase Deficiency

I AM A 26-YEAR-OLD GRAPHIC DESIGNER… BY JACKSON FUKUDA This is my story with arginase deficiency. A decent amount of information was told to me by my parents. I felt that they would be the best ones to tell my story when I was diagnosed and how life was for me at a very young age. At a young age they started to notice a big difference between other children my age and myself. I […]

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Developmental Coordination Disorder

The “hidden” facet of autism spectrum disorder BY DR. SHELLEY MARGOW, OTD, OTR/L Clumsiness is an inevitable part of growing up, and all children bump into objects, drop things and sometimes fall in their journey to adolescence and adulthood. But there are some kids whose struggle to fully participate and learn new skills in daily activities at home, in the playground, and in the classroom is ceaseless. The cause is Developmental Coordination Disorder (DCD), a […]

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AMERICA’S TOOTHFAIRY – National Children’s Oral Health Foundation

BY JILL MALMGREN Did you know that pediatric dental disease is the most common, chronic disease among children in the U.S.? More common even than asthma or diabetes? More than 40 percent of children experience tooth decay by the time they reach kindergarten, and the decay rate for children with special needs is even higher. Because tooth decay affects millions of children, it is easy to believe cavities are inevitable and just a normal part […]

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How To Maintain Health While Living With Certain Health Conditions

BY MELISSA A. DISIPIO, MSA, FAAIDD Philadelphia Coordinated Health Care (PCHC) is the Southeastern Pennsylvania Health Care Quality Unit (HCQU) that provides indirect health care supports for people living with intellectual disabilities and/or autism for almost 30 years. Over its existence, PCHC has created several tools, resources and educational forms to help people understand how to care for the physical and behavioral healthcare needs of someone with special needs. PCHC created Health Promotion Activity Plans […]