After 10 years as blog editor, and 28 years of working in various information roles with Down Syndrome NSW, this is the last of 4,400 posts from me.
Thank you for reading, for your interest and contributions over the years.
Contact details for Down Syndrome NSW are in the list of page links at the top of this page, just under the banner.
There is so much in this video that I want to dissect about the Down syndrome diagnosis narrative, but honestly, I don’t feel like making this a resource post… let’s just talk about it as friends do. Is that cool with you?
But first – watch it if you haven’t ...
Cara discusses common Down Syndrome myths and explain how a community of “rockin moms” (moms of kids who “rock” an extra copy of the 21st chromosome) are working to socially construct society’s “next” conversations about DS through critically examining the impact of our language choices ...
... I wrote a column published with the heading “Welcome 8 point 1 point 5 (his birth weight) We love you”, which went on to win an award, while Nick went on to be one of the best things that happened in our lives ...
At a young age, I learned to be a responsible person. The instinct to be a protective sister came naturally. How could I not? The love of a baby, in my case a younger brother, came so natural. I couldn't imagine anyone not loving or adoring this small person. At this time, I didn't know he had Down syndrome, but it didn't matter. I think I was too young to understand what this even meant, and society wasn't open to those with disabilities during this time ...
... In expanding your friendship and reading circles to adults from the disability community, you will likely see things from an altogether different perspective, and one that is often highly enlightening!
Blogs are an excellent avenue by which you can forge forth and figure out who sounds most like someone you want to get to know ...
... there are some things my kids intuitively grasp without my help. To my surprise, nearly everyone I meet below the age of 4 just rolls with it when it comes to disability. Ableism hasn’t taken hold yet. Here are five things I’ve seen young children totally understand about disability that unfortunately, most adults struggle with ...
Participants and providers work with the NDIS to improve processesDavid Bowen, CEO National Disability Insurance Agency (NDIA), 6 June 2017
The Board and Executive Management team of the National Disability Insurance Agency (NDIA) wish to provide information to the Scheme’s existing and potential participants, their families, carers and providers regarding major work that is underway to deliver a significantly upgraded quality of participant and provider experience in a way that remains consistent with maintaining the Scheme’s financial sustainability ...
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These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them
An exploration of the fundamental issues that arise with the use of restrictive practices within human services. Find out how different restrictive practices are used, the personal and social costs involved, and guidelines for how to approach the use of restraints.
Presenter: Dr Marc Tumeinski
Protecting the lives of vulnerable people in medical settings. This workshop will examine complexities around medical settings and provide strategies for upholding protective measures. Highly relevant for medical staff and professionals seeking to better support people with disability in medical environments.
Presenter: Jo Massarelli
The World Congress will bring together people and organisations from all over the world to learn from and inspire each other. Together we will lead the way in making inclusion a reality for people with intellectual disabilities and their families.
The event brings together self-advocates, families, and professionals to:
- learn and share experiences from around the world about issues and challenges faced by people with intellectual disabilities and their families as well as strategies that have been successful in achieving achieve change
- inspire and be inspired by successes and innovations for inclusive practices
- lead the way as a global movement in promoting inclusive communities.
In this presentation, Dr. Brian Skotko reviews the latest advances in prenatal testing for Down syndrome. He further reviews the evidence-based research on how physicians can effectively deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics, American Journal of Obstetrics and Gynecology, and American Journal of Medical Genetics.
Dr Skotko's approach is congruent with the DSi position statement:
... DSi asserts and defends the right of a woman (or a couple) to information about the human rights and potentialities of children with Down syndrome.
DSi encourages a balanced and informed approach to the use of prenatal tests by government policies, the professionals involved and all family members.
DSi contends that voluntary screening should be available to all pregnant women on request and the decision to undergo testing has to be made by the pregnant woman (or couple).
BUT, that at the time of testing, easily understood information MUST be provided that is up-to-date ...
... This information MUST be provided in an unbiased way by well trained professionals who understand their ethical responsibilities as well as having good communications skills and up-to-date information. At the same time, potential parents should be directed to further sources of information ... read the whole statement here.
While there is research documenting the challenges of raising a child with a genetic condition, there is very little investigating the positive aspects.
This study by researchers at the Australian Catholic University aims to explore what opportunities and rewards are experienced by having a family member with Down syndrome and what impact having a family member with Down syndrome had on the lives of family members.
Importantly, the study hopes to capture the perspective of parents, grandparents and siblings of an individual with Down syndrome. Family members are encouraged to share stories, anecdotes and perspectives via an online questionnaire.
It is anticipated responding to the questions will require about 30 minutes. These surveys are anonymous, and participants aged 12-18 will be assisted to provide parental consent.
Family members who are interested in participating can email Rebecca Bobin at rebecca.bobin@myacu.edu.au for more information or click on the link to obtain a participant information statement.
- Please follow this link to the survey.
A phase 2 clinical trial in young adults with Down syndrome of a drug being investigated for the treatment of Alzheimer's disease supports further investigation of its potential. Results of the four-week trial of scyllo-inositol, also known as ELND005, have been published in the Journal of Alzheimer's Disease.
"Through this study, members of the Down syndrome community have demonstrated loudly and clearly that they are eager to participate in clinical trials, particularly studies that provide promise for the treatment of Alzheimer's disease," says Brian Skotko, MD, MPP, co-director of the Massachusetts General Hospital (MGH) Down Syndrome Program, and a site principal investigator for the trial. "This first, industry-sponsored phase 2 trial in the Down syndrome community showed that people with Down syndrome were able to follow the study protocol and that the drug was safe and tolerable" ...
Michael Rafii et al, A Randomized Double-Blind, Placebo-Controlled, Phase II Study of Oral ELND005 (scyllo-Inositol) in Young Adults with Down Syndrome without Dementia, Journal of Alzheimer's Disease, vol. 58, no. 2, pp. 401-411, 2017
World Down Syndrome Day Wrap Up Get Ready for Step UP! Disability Support Pension (DSP) Information, Linkages and Capacity Building National Disability Insurance Scheme (NDIS) DSA Director Finalist for Western Australian of the Year awards Current Consultations on Antenatal Guidelines Research Opportunity: The Perspective and Experiences of Families Raising a Child with a Genetic Condition Voice |
When I first started teaching sexuality education, I focused on people with disabilities, the parents and carers of people with disabilities, and professionals who worked with people with disabilities. I truly loved my work. When I moved back to the United States, I attempted to bring that work with me, pitching various disability support organizations around Chicago to teach sexuality education. The best response I got was...let’s call it polite disinterest ...
... Perhaps because of some of the early beliefs that people with developmental disabilities are nonsexual, they have not had access to appropriate and adequate sexual education. Sex education, within the typical population, is gradually shifting from being based on the assumption of heterosexuality to being more inclusive. But even the discussions around these shifts have not occurred to the same extent in the service-providing sector for people with developmental disabilities ...Speaking OUT: Understanding Sexuality and Diversity in
... It took me this long to realize that my fellow parents are only part of the puzzle and they can only offer me so much peace of mind. Only people who live with Down syndrome can walk me through what it feels like.
Oh, but that’s ok, we tell ourselves. We justify our non-involvement of people with Down syndrome by saying we are having private conversations or that we are talking about things only parents can understand. Let me be clear: these things are ok and good and helpful. The problem starts when we don’t leave that bubble, or react with anger when disabled voices encroach on that bubble ...
... When she got to the cashier she pulled out her money and gave it over. Here's the amazing thing. It's a small thing. But it's a huge thing too. During the time she was paying, and accepting the change, and putting it back into her purse, she never looked to him. She didn't look for approval. She didn't look in fear of having made a mistake. She didn't look to him for a cue of any kind. She just did what was needed to be done and then picked up her tray and moved on, going ahead, while he paid, to select a table ...
Comic book fans are very attached to their universe, but are they ready for a superhero with a disability? A new comic, Superb, debuts in July featuring a character with Down syndrome. Author Sarah Kanake's brother has Down syndrome and she's written a novel featuring a main character with the condition. Hilary Harper talked to her on Saturday Breakfast ... (8m 24s audio file)
#7 “ People with disabilities are an unfortunate drain on society.”
The Facts: Considering the ways society limits the lives of people with disabilities, it’s the other way around: society is a drain on people with disabilities.
Significant contributions made by people with special needs to our communities are well documented.