Saturday, 22 April 2017

NDIS information event, Burwood (Sydney)

NDIS: Community Information Session 
10.00am - 12.00pm or 6.00pm - 8.00pm 27 April 2017 -  Burwood NSW
  • designed to help people with disability, as well as their families and carers, get ready for the National Disability Insurance Scheme that will commence in your area on 1 July 2017
  • what is the NDIS and how does it work?
  • am I eligible for the NDIS?
  • what will happen if I am made eligible?
  • what kind of support can I access through the NDIS?
  • RSVP by 24 April

Friday, 21 April 2017

Weekend reading and viewing: 22 - 23 April 2017




The parent essay or memoir on discovering one's child is not typical in some fashion is at once among the most common disability-related genre and one of the most difficult to do well. Of necessity, the essay has to move through ableist ideas about normality, encounter the challenges of having a disabled child, and then come out the other side of that encounter with ... wisdom? Hopefully, wisdom ...
David Perry, How Did We Get Into This Mess? 
17 April 2017

... As I recall the many stories I’ve read or heard over the years, I can’t help but ask this question: What is the big deal about Down syndrome, anyway? ... My husband listened to my rhetorical questions and offered his opinion: “Because it’s not easy. Parenting a child with Down syndrome takes a lot of work.” And while I wasn’t looking for an answer from him, per se, his answer exposed the truth about why our world wants to wipe Down syndrome from our midst: fear ...
Chasing Genuine, 17 April 2017

... It is wonderful that so many people with Down’s syndrome are accepted and celebrated in society. There are more possibilities now than there were even just 20 years ago, but there is another side to the story. There are some people that have more than just Down’s syndrome, who have a dual diagnosis of Autism and Down’s syndrome, those that are not always understood and treated fairly ... Parents of these children and adults can often feel as we do, that we are stuck in No-Man’s-Land. We adore Ethan and what I describe here is an open and honest account of our family experience ...
Nicky Holmes, DSA (UK) Journal
#133, Spring/Summer 2016

... They never spotted her loneliness and therefore never realized the vulnerability that comes with it ... no one teaches staff about the fact that people with visible intellectual disabilities have a target on their back and need a different kind of support when living independently in the community. Inclusion has sharp edges, but no one ever spoke to the staff about them and no one taught her how to avoid them ...
Dave Hingsburger, Of Battered Aspect 
17 April 2017

Thursday, 20 April 2017

BSWAT Payment Scheme: reminder to register and/or apply by 30 April 2017


Thousands of people with intellectual impairment are entitled to a one-off payment through the Australian Government’s BSWAT Payment Scheme. 
Between 2004 and 2014, the Business Services Wage Assessment Tool (BSWAT) was used to assess the wages of many supported employees of Australian Disability Enterprises (ADEs). 
In 2012, the Federal Court determined that the BSWAT indirectly discriminated against two ADE employees with an intellectual disability. 
The Australian Government has set up the BSWAT Payment Scheme ... read the full page of information and links here
People must register for the scheme by 30 April 2017. If they don’t register they cannot apply for a payment, even if they may have been eligible. 
It's quick and easy to register online. Alternatively, people can call 1800 799 515 or send an email.
Read the second issue of BSWAT News here - lots of information about the payment Payment Scheme. If you haven’t already subscribed, you can subscribe here.

Wednesday, 19 April 2017

Arts news

Sprung Integrated Dance Theatre nominated for national award
Sprung Integrated Dance Theatre, located in the Northern River region of NSW, has been long listed for an Australian Dance Award for outstanding contribution to community dance for the 2016 work, 'Encounters'.
This work came out of two years engagement with community groups including Byron Youth Theatre and Lady Cilento Children's Hospital, plus intense ensemble and skills development for our core dancers ... Sprung, on Facebook, 10 April 2017
The awards ceremony will be held in Melbourne on 24 September.

First-time playwright brings his experiences with Down syndrome to the stage
Mandy Marciniak, Kingston Heritage (Canada), 7 April 2017
For Jacob Ballantyne, the world can sometimes be a bit overwhelming and confusing. The 19-year-old Kingstonian is an aspiring playwright who also has Down syndrome, and this month he is sharing the story of his life and experiences in a unique way.

"This is the first time I have written a full play," he explained. "It is inspired by the movie Cheaper by the Dozen, and it is about living with Down syndrome in the mix of other disabilities and inspired by my own experiences" ...


ABC’s ‘Speechless’ Honored For Disability Storyline
Michelle Diament, Disability Scoop, 14 April 2017
... ABC’s “Speechless” is one of six shows that was named to the Television Academy Honors this week. The annual recognition from the Academy of Television Arts & Sciences highlights “programing that explores and confronts significant issues facing our society in a compelling and impactful way.”

“Speechless” was selected for exploring life with a disability and “the challenges and joys that come with it.” ...

The Who's Tommy review – bold retake on rock opera tackles disability rights

Lyn Gardner, The Guardian, 6 April 2017
Disabled and non-disabled actors, mixing in sign language and audio description, bring fresh dramatic insight to Ramps on the Moon’s pinball wizard musical ... Anyone with a lingering nostalgia for the 50s or 60s will have their eyes opened as the unresponsive Tommy is subjected to the arrogant blindness of medical science, the grasping greediness of quacks, and abuse much closer to home ...

News and commentary on the NDIS (66)

These links all address housing and supported living provisions of the NDIS:


Explainer – unlocking the SDA rule
Every Australian Counts, 12 April 2017
What is the new Specialist Disability Accommodation Rule and what does it mean for people with disability under the NDIS?

The SDA rule is a really important document because it sets out how and what accommodation can be provided for people with very high support needs through the NDIS. It’s protected by law and has the agreement of all state and territory ministers ...


The Evolution of Housing for People with Disabilities
George Taleporos, Probono News Australia, 11 April 2017
This week on the ABC’s Lateline program, people with disabilities had a glimpse of the future of disability housing in Australia – a future where people with disabilities choose where they live and who they live with. This is something that most of us take for granted, but for people with disabilities it is an exciting new possibility that the National Disability Insurance Scheme (NDIS) is promising to deliver ...
Norman Hermant, Lateline (ABC TV), 4 April 2017 (Video 5m 15s, transcript)
With just three years to find housing for 27,000 people, the NDIS has found unexpected support from major builders, who have seized on the opportunity to build accessible homes for tenants with special needs ...
Ilan Wiesel and Karen R Fisher, The Conversation, 12 February 2017
The National Disability Insurance Scheme (NDIS) is expected to help more people with disability access the support services they need to live independently in the community. But the majority of NDIS participants have low incomes. So, without substantial financial assistance, they struggle to find affordable housing to move into. In recent years there has been much public policy discussion about shared ownership housing models – also known as shared equity – as part of the solution for this problem ...

Re-post from News and commentary on the NDIS (64):

NDIS housing rules for people with a disability could be life-changing
Libby Calloway, Kate Tregloan, The Conversation, 23 March 2017
The National Disability Insurance Scheme (Specialist Disability Accommodation) Rules were tabled in federal parliament in mid-March. The new rules offer the possibility of an inclusive Australian society that enables those people with the highest disability-related support needs to have equal access to mainstream services including housing ...
____________________________________________

Tuesday, 18 April 2017

Information and Support Manager: Down Syndrome NSW



Down Syndrome NSW is looking for a passionate and dynamic person to join the Down Syndrome NSW team.

Position: Information and Support Manager - part time
This role involves the co-ordination and delivery of information and support to prospective and new parents, carers, DS NSW members, and the broader community regarding a variety of Down syndrome related topics and issues.

The successful applicant will work closely with families with a new diagnosis. It will involve the provision of timely and considered information and support to new and prospective parents and carers.

We are looking for someone with relevant tertiary qualifications and/or experience in disability, social welfare or equivalent, with a demonstrated knowledge and understanding of people with Down syndrome and their families. Ideally this person will have a lived experience of Down syndrome.

This is a part time position of up to 4 days per week and located in our offices in North Parramatta.

For more information and to obtain position description and selection criteria, please contact Catherine Pedler on (02) 9841 4444 or email catherine.pedler@dsansw.org.au

Monday, 17 April 2017

MagPort: a magnetic tip charger cable for iOS and Android

Sam Paior, who owns The Growing Space Australia Facebook page and website recently drew readers' attention to a clever new mainstream device that could be very useful for people with Down syndrome, or anyone who would benefit from fine motor support to manage their phone charger - the MagPort USB phone charger cable. See Sam's Facebook post dated 2 March 2017:
Sometimes, I get really excited about little things that can make a big difference. This is one of those. 
Do you or someone you love have Cerebral palsy, stroke, spinal injury, MS, MD, or other difficulties with fine motor, limb difference etc, and connecting chargers to phones, iPads and other devices on their own is hard? Or do you have to buy new charging cables *all the time* because they get ripped out of devices and ruin? 
This cable has a tiny dongle thing that you plug into the charging socket on your phone or device, and then the cable just magnetically draws in and "clicks" into place - you can do it with one hand, and when you detach the cable, you won't ruin it if you're rough. The cable has a lifetime guarantee and works for charging and data, too. You don't see that often!  
It really is pretty awesome. It won't be right for everyone (the cable detaches relatively easily which is great for some, but may be a pain for others), but for many it will be brilliant.
Read the comments for Sam's recommendations on NDIS funding for such devices - she has checked it out.

The Growing Space is based in Adelaide, but Sam generously shares a great deal of information that is universally applicable, and she is very knowledgeable about the NDIS. Like the Facebook page and sign up for the free monthly newsletter while you are there.

Saturday, 15 April 2017

Weekend reading: 14 - 15 April 2017


... This weekend, I was pretty excited to share a joy about my son, an ornery teenager with smelly feet (aren’t they all?) with intellectual disability, who kicked a massive goal. Not of the footy kind, but of the life kind. 
He learned to catch a public bus home ...
Ben and Sam Paior , Every Australian Counts
12 April 2017
Conflicts of power and control commonly emerge in people with Down syndrome in their late 20’s and 30’s— later than their typical peers. While siblings and peers begin hitting transition milestones— like moving out, going to college or work, getting married— adults with Down syndrome may feel stagnant in comparison ...
Bryn Gelaro and Dennis McGuire
Global Down Syndrome Foundation Newsletter
April 2017

... Why is it that some men feel this compulsion to carry all the responsibility and have the misguided belief that they alone have to hold the family together in the hour of need? I felt I had to be like the general of an army in the old war movies, standing tall on the hill, watching the battle play out in front of him, all the time remaining calm, emotionless and composed. This was my duty as the male in the household and, for the good of the family, I felt I could not let my emotions out, because if I did, I was being weak. When I look at these words now, I think, “What a load of rubbish!” ...
Michael Harrison, Extract from Now I See:
 the Enriching Journey of Raising Children with Down syndrome
  • Now I See has updated its website, and is calling for submission for the next edition of the book.

I ended up chatting with a young fellow, to me that's around 30, with a disability on a ride to work. He asked me what I did for a living and then told me about his job, about which he was quite proud. Without even lowering his voice to become conspiratorial, he openly said that we weren't like 'those others.' And while he is right, the employment rate of people with disabilities is abysmal, it is so because of employers refusing to make accommodations either to their workplaces or to their mindset ...
Dave Hingsburger, Of Battered Aspect
5 April 2017


... Right now, Colleen is enjoying life to the fullest. I know that there will more changes and challenges to come with Colleen, her abilities and our life ... As shocking and heartbreaking as this diagnosis was for our family, I am grateful that it was caught early. The progression of the disease may not change, but we have the opportunity to make changes in Colleen’s care and have support each step of the way ...
Bo Thompson, Advocate Health News, 7 April 2017

'Let’s not give our kids the message that there’s a difference between being nice to a typical person and a disabled person. That the latter makes them somehow a “hero” while the first is expected as the norm. '
Sophie Trains, Respectfully Connected

Friday, 14 April 2017

Winter Sports with Special Olympics Australia

Home from a very successful 2017 Winter Olympics in Austria, Special Olympics Australia is calling for expressions of interest from both participant athletes and volunteers in its Winter Sports Program of participant and development camps in skiing and snow boarding:
'Special Olympics Australia Wintersports program is a national program whereby we provide athletes with the opportunity to learn to ski / snowboard as well as train and compete in alpine skiing and snowboarding competitions.'
All details about the camps, including dates, locations and costs are available on the webpage, which also has links to media and photos from Austria last month.

Thursday, 13 April 2017

My Perspective: reminder

Today's reminder is for entries to the 2017 My Perspective Photography Competition, run by the Down's Syndrome Association in London.

Entries close 28 April 2017

Entries are invited from photographers with Down syndrome worldwide.

Latest additions to 'events' pages

    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 


    Families Getting NDIS Ready
    Wednesday 24 May 2017 - Bomaderry
    Thursday 25 May 2017 - Wollongong
    Friday 26 May 2017 - Miranda

    Resourcing Families
    A free workshop for families to kick-start their NDIS preparation and make the most of the NDIS for their family member with disability - presented by Jan Kruger and Jack Kruger.
    • Hear from a parent and a participant about their NDIS journey
    • Find out how and why they self manage NDIS supports
    • Ask your questions of an NDIS representative
    • Explore strategies for creative planning
    • Learn tools for advocacy in a changing support environment
    Understanding Person Centredness
    25 May 2017 - Camperdown (Sydney)
    Centre for Disability Studies
    Participants will attain knowledge in the background and philosophy of Person Centredness and develop skills to apply it in their daily professional practice. 
    Audience - anyone interested in learning about the fundamentals of Person centredness. This is a good introduction into the CDS suite of Person Centredness workshops. 
    Facilitator - Ray Murray
    Carers and the NDIS workshops
    May – August 2017 Ashfield, Botany, La Perouse, Marrickville, Nowra, Port Macquarie, Ryde, Shellharbour, Strathfield, Sutherland, Ulladulla, Waverly
    Carers NSW
    Do you care for someone with an NDIS package? 
    Carers NSW is running a series of Carers and the NDIS workshops designed to help carers get the best outcome from the NDIS for the person they care for and for themselves.

    Wednesday, 12 April 2017

    Reminder: 9 pm tonight

    You Can't Ask That, ABC TV 9 pm tonight: the episode where people with Down syndrome answer the questions.
    People with Down Syndrome are often faced with a world that believes they don't have much to contribute. Tonight, #YouCantAskThat gives them a chance to speak for themselves.

    Well worth watching. Or later on iView.

    News and commentary on the NDIS (65)

    Jessica Irvine, Sydney Morning Herald, 10 April 2017
    Everyone knows the National Disability Insurance Scheme is a great idea, but hopelessly over budget – an expensive Labor extravagance – right? Don't buy the lie.

    'National Disability Insurance Scheme Costs' review
    More than 180 submissions have been received in response to the Productivity Commission's Issues Paper, National Disability Insurance Scheme Costs. Initial submissions were due by 24 March 2017. Opportunity for further comment will be sought upon release of the position paper in May 2017.

    The study will examine issues including: the sustainability of scheme costs; jurisdictional capacity (including the complementary disability services provided by the States and Territories); cost pressures (including wage pressures); changes in the agreed escalation parameters; whether efficiencies have been achieved within the scheme; whether there has been any impact on mainstream services; and examine the most appropriate levers to manage any potential cost overruns.
    A broad range of organisations and individuals have responded, including Down Syndrome Australia - background and summary of the DSA submission and a link to the paper

    NSW Government privatisation plans leave people with disabilities in uncertainty
    Alison Branley, ABC, 7 April 2017
    Now the NSW Government has confirmed it has a long-term plan to sell off these homes as part of the move to a National Disability Insurance Scheme (NDIS).

    NSW Disability Services Minister Ray Williams said in the medium term the properties would be leased to private community housing providers under five to 10-year agreements. But after that, they would be sold ...


    Disability services sell-off in New South Wales being bungled, carers say
    Alison Branley, ABC News, 31 March 2017
    Carers of people with a disability have accused the NSW Government of bungling its sell-off of disability services.

    The State Government currently runs about 300 group homes in NSW and now that service has been put out to tender under the shift to the National Disability Insurance Scheme (NDIS). This sell-off has left many residents and their families anxious and uncertain about their future.

    Families of residents said they were angry the process had been structured so they have only one choice in many areas, and often it was a larger organisation ...


    Siblings and the NDIS
    Kate Stohm, Every Australian Counts, 8 March 2017
    The NDIS is a new way of supporting people with disability. Whilst it aims to provide greater choice and control regarding services for participants it also recognises the important role of ‘informal supports’ ...

    Disability Advocacy Funding Failure
    Lena Cavena, Pro Bono News Australia, 9 March 2017
    The future of many disability advocacy organisations is under threat with the expected loss of NSW government funding from July 2018 as the National Disability Insurance Scheme (NDIS) continues to roll out nationally. 

    Under the terms of NSW’s NDIS deal with the federal government, the state will hand over all its disability budget to the Commonwealth from 1 July 2018.

    The CEO of Disability Advocacy NSW, which is one of the largest disability advocacy services in the state, is Mark Grierson. He told Pro Bono News that the NDIS definition of disability support excluded advocacy and health-related services ...


    Weekly Q and A 
    NDIS, from 24 March 2017
    We established this weekly Q and A forum because we are reading your comments, and want to answer the most commonly asked questions, including those with answers we think will be helpful to a wide range of people who visit our social media channels.

    • Q and A forums are located on the 'news' page, 7 April and 13 April now listed.


    ____________________________________

    The official NDIS website provides access to documents, and up to date information about how the NDIS works, and NDIS events such as local workshops and webinars.


    NDIS and Me
    People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.


    Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.

    Two other closed Facebook groups (only members can see the posts) that you might find useful for answering particular queries are:
    • NDIS Grassroots Discussion - a large group run for and by people with all kinds of disabilities, and welcoming of carers - the administrators are very experienced in managing discussions that can become robust at times, as criticism of the NDIS is raised
    • the newer and smaller I Love NDIS aims to promote discussion of individual's successes in putting their plans together and implementing them.

    Tuesday, 11 April 2017

    NSW CID End of Financial Year packages

    NSW Council for Intellectual Disability offers a range of expert services to organisations:


    With the end of the financial year rapidly approaching, now is the time to put the remainder of your hard-won budget to good use. NSW CID is offering some great value EOFY packages that will help your organisation be more inclusive and accessible. What better use is there than that?

    Need Easy Read materials? Keen to offer more learning opportunities for people with intellectual disability? Wondering how to make your organisation more inclusive? Want to invest in training for your staff? We can help you achieve all of this and more with the expertise of people with intellectual disability, our skilled trainers, facilitators, designers and easy read gurus.

    View flyer for more information here or contact our Business Development Manager Tymon Kennedy to book today.

    Research news and commentary #3 for 2017



    Urine test may be able to diagnose obstructive sleep apnea in children with Down Syndrome
     Massachusetts General Hospital, 7 April 2017
    A study from Massachusetts General Hospital (MGH) investigators raises the possibility of identifying children with Down syndrome who may also have obstructive sleep apnea (OSA) without the need for expensive and inconvenient sleep studies ...
    • Ibrahim Elsharkawi et al, Urinary Biomarkers and Obstructive Sleep Apnea in Patients with Down SyndromeSleep Medicine, abstract published online 7 March 2017
    • The abstract is available to read online without charge. The full text of the original study report is available for purchase online.
    Case Western Reserve University Researchers Turn Urine into Research Tools
    Case Western Reserve University School of Medicine, 28 March 2017
    One of the biggest challenges in studying Down syndrome is finding the right research model. Animals and established cell lines are limited in their ability to mimic human disease, and results don’t always translate to patient populations. Stem cells hold enormous potential as research tools that can be collected directly from patients and grown into innumerable cell types. But harvesting stem cells can be tricky and invasive—a tough sell to institutional review boards when dealing with children or patients with intellectual disability.

    Now, researchers from Case Western Reserve University School of Medicine have developed a breakthrough technique to harvest cells directly from urine, and grow them into durable, clinically relevant stem cells to study Down syndrome ...

    Crnic scientists publish groundbreaking leukemia research in the journal 'Cell’
    Global Down Syndrome Foundation, February 2017
    Nationally renowned Crnic scientists, Dr. Joaquin Espinosa— the associate director for science at the Linda Crnic Institute for Down Syndrome, a Global affiliate— and Dr. Kelly Sullivan, teamed up with Northwestern University scientists and published findings that can lead to novel therapeutic approaches for the treatment of a specific subset of leukemias ..

    My Friend Lovey (15m 21s audio file)
    Mary-Ann Allen, Global Down Syndrome Foundation/Story Collider, July 2016
    Mary Ann Allen is a Sie post-doctoral fellow at the Crnic Institute for Down Syndrome— a Global affiliate. In this 15 minute story Allen takes listeners through the journey that led her to studying Down syndrome today. The researcher shares how she was mainly inspired by her childhood friend, Lovey, who has Down syndrome. When the opportunity to study Down syndrome crossed Allen’s path a couple years back she said she jumped at the chance because she “loved Lovey.” But, once Allen started her research what she discovered wasn’t was she was expecting.

    Monday, 10 April 2017

    New blog post from NSW Council for Intellectual Disability

    Even less choice: the latest on the ADHC transfer of services 
    NSW CID e-News, April 2017
    People living in Ageing, Disability and Home Care group homes across the state and their families are dismayed at losing the small amount of influence they were promised in determining their new service provider.

    They were originally told they would be presented with a shortlist and consulted about which provider they would prefer take over their group home.

    Instead, they have been asked to choose from a shortlist of only one provider. As far as short lists go, that’s a very short list.
    Read the full blog post here.


    Friday, 7 April 2017

    Weekend reading and viewing: 8 - 9 April 2017



    'You Can't Ask That' asks people with Down syndrome the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but never had the guts to ask.
    ABC iView (available until 6 April 2020)
    Series airs on ABC TV on Wednesdays at 9 pm

    ... he tried to assert himself, to do something for himself rather than have something done for him. Coming from the land of low expectations meant that he'd be trapped by helpers for his whole life, he would have been denied the freedom to try, the freedom to fail and the freedom to learn. He wants to move, into here, into now ...
    Dave Hingsburger, Of Battered Aspect
    29 March 2017
    ... Looking after Skye can sometimes be time consuming and what Howard and Rhona have to work out is how much time to devote to her, while making sure that big sister Molly and younger brother Lewis are not feeling neglected. Getting the balance right isn’t easy. It doesn’t mean that Skye has to be wrapped in cotton wool. All the normal family life, fights, squabbles, sulks and falling outs still occur, but for parents, finding the balance can be difficult, especially when one of the children needs extra attention ...
    Jeff Campbell, DSA (UK)
    23 March 2017
    ... I had incredibly complicated emotions after Kate was born, as well. I absolutely loved her with every part of my heart, but I was sad, scared, and confused about her diagnosis. I get that. You are absolutely not alone. 
    If I can offer you any piece of advice to start with, I would simply say: be patient with yourself. Your body just did an incredibly big thing and this season is tender and sensitive. It takes time to get to know any newborn, no matter what their ability ...

    Sipping Lemonade, 19 February 2017

    Priorities for action: Human Rights Commission

    Shaping our future: discussion on disability rights
    Human Rights Commission, 6 April 2017
    Between October 2016 and March 2017 Disability Discrimination Commissioner, Alastair McEwin conducted a national consultation to help guide his priorities and seek input from the disability community on how he can most effectively work to advance the rights of people with a disability ... The Disability Discrimination Commissioner has identified the following priorities for his term:
    • Employment
    • Education
    • Housing
    • The criminal justice system
    • Implementation of the National Disability Insurance Scheme (NDIS)
    • Violence
    A series of text transcripts, videos and infographics summarising what the Disability Discrimination Commissioner heard during his national consultations about each of these priorities is now available on the Human Rights Commission's website. A more detailed roadmap outlining actions for the Disability Discrimination Commissioner's term will be released later this year.

    Thursday, 6 April 2017

    'Voices from a silent journey': International Journal for Direct Support Professionals


    Voices from a silent journey
    Melodie Cook, International Journal for Direct Support Professionals, Vol 6, #4, April 2017
    ... People with intellectual disabilities are often socially withdrawn whether they communicate verbally or not. This has nothing to do with their ability to contribute but has lots to do with our social world which tends to value verbal communication which is fast paced ...
    This free Canadian journal is also available in French, and all back issues are available online here. Each issue deals with a single topic.

    News and commentary about the broader disability community

    Carly Findlay, Ravishly, 3 April 2017
    When my husband suggested we see the 2017 remake of Beauty and The Beast, I told him we couldn't watch it because I'd be looking at it through appearance diversity lens. My disability pride and politics ruin everything!

    But we went, and I tried to keep an open mind. I watched it, and I enjoyed it. There was a beautiful, diverse cast, filled with strong black women as lead characters — and a gay storyline, too! I liked the costumes and the songs. I especially liked the animated personifications of candlesticks, clock, duster, cup, saucer and furniture. They were charming. I still couldn't get past the idea of The Beast, though ...
    Dave Hingsburger, Of Battered Aspect, 30 March 2017
    Warning, I'm going to quote a conversation that I got pulled into with two people with intellectual disabilities. A boyfriend and a girlfriend were discussing who they were, not to each other, but to the world. I'm going to use the words they used as risk of offending every reader. But to be true to the story and to respect the language they chose to use, I am going to risk that ...

    David Lohr, Huffington Post, 14 March 2017
    A disturbing number of caregivers kill the people they're meant to be helping ...

    National approach crucial to make Australians with disability equal before the law
    Nance Haxton, ABC News, 20 March 2017
    As an ABC journalist for almost two decades, one issue I have reported on that has rattled me more than any other is the discrimination against people with a disability in Australia's justice system ...

    Wednesday, 5 April 2017

    You Can't Ask That: reminder of series return tomorrow, ABC TV

    Several people with Down syndrome will appear in the new series series:
    You Can't Ask That returns for a second season of life-affirming, insightful, hilarious and refreshingly inappropriate television. 
    ... You Can't Ask That asks groups of misunderstood, judged or marginalised Australians the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but have always been too afraid to ask.
    You Can't Ask That Series 2 starts on ABC TV 1, 9.30 pm Thursday 6 April 2017 and will be on iView (Episode 1, Blind People, is available now).

    People with Down syndrome


    Ben and Co’s inspiring story to fill gap in community
    Gearja Ryan, The Daily Examiner, 27 March 2017
    Ben Hunter beams as he bakes and sells an impressive range of muffins, biscuits and slices at local markets. The 20-year-old, who is non-verbal and has Down syndrome, develops his produce in his own commercial kitchen, with his NDIS support workers, Sarah and Nandi, and his mum, Carolyn ...

    News Beat (BBC), 22 March 2017
    A teenager with Down's syndrome has addressed the United Nations in Geneva to call for more equality. Kathleen Humberstone spoke out against discrimination during the event marking World Down's syndrome day ...
    In My Own Words: Miles Evans
    People with Down Syndrome, 8 March 2017
    Miles Evans has won numerous awards for his photography, and has presented his work at shows. He also sells his framed photos and photocards. For Down Syndrome Awareness month this year, proceeds from his sales went to benefit the Adult Down Syndrome Center at Advocate Lutheran General Hospital and the National Association for Down Syndrome ...

    Down's Syndrome woman to present weather on French TV after winning hearts
    Oliver Gee, The Local, 3 March 2017
    Mélanie's dream has always been to be a weather presenter on TV - and that dream is about to become a reality after her social media campaign went viral ...

    Born With Down Syndrome, Shy Teen Competes In Bodybuilding
    Joanne Kimberlin, The Virginian-Pilot/TNS, 27 February 2017
    Life hasn’t been easy for Jon Atkins. Born with Down syndrome, he deals with a lot of just-can’t-dos. It took years to learn to count to 10. At 19, he’s able to read 30 or so words. Fine motor skills — buttoning a shirt — remain frustrating.

    But Jon is no quitter, and he’s found something he’s pretty good at: bodybuilding ...


    We have posted an earlier link to an article about Kaleigh William's half-marathon. It is good to see it featured in Runners' World as well:

    Runner With Down Syndrome Dances Her Way Through Half Marathon Finish Line
    Heather Mayer Irvine,  Runners' World, 24 February 2017
    The course had been packed up for hours. Most spectators were long gone. Every single half marathoner had collected his or her race medal and headed to a celebratory brunch. All but one.

    Kayleigh Williamson, 26, crossed the Austin Half Marathon Finish Line in 6:22:56, making her the first person with Down syndrome to complete the Texas race.

    “I kept going,” Williamson told Runner’s World by phone. “[When] I hit the finish line I was proud of myself. My friend got me pretty nice flowers.

    About Down's Syndrome : Daniel
    Down's Syndrome Association (UK)
    My name is Daniel. I want to tell you about my Duke of Edinburgh Silver award ...

    We Can
    Same but Different
    A UK photography project that aims '... to promote greater awareness of the huge amounts that can be achieved by adults with learning difficulties and children with complex needs. In the “We can. ...” project we will use photography to capture powerful images, video’s and written pieces to tell their stories. 
    Two people with Down syndrome are included so far:  Mark and Kate

    Tuesday, 4 April 2017

    New quarterly newsletter from Down Syndrome Australia

    'Welcome to Down Syndrome Australia’s first newsletter, bringing you key highlights from our work, information on upcoming events and opportunities to share your views and experiences. Down Syndrome Australia was established in 2011 as the peak body for people with Down syndrome in Australia. 
    Our vision is an Australia where people living with Down syndrome are valued, reach their potential and enjoy social and economic inclusion. '
    You can subscribe to receive the newsletter online via the Down Syndrome Australia website - scroll to the bottom of the page to enter your email address.


    Arts news and commentary

    CREATEABILITY 2017 is a Screenworks initiative supported Screen NSW and the ABC that provides funded opportunities for professional filmmakers living in Regional NSW to profile artists with disability living and creating in their communities. 
    The key objective of CREATEABILITY 2017 is to profile work produced by artists with disability through identified arts organisations and screen media.
    Registrations for CREATEABILITY 2017 will close at midnight on Sunday 23rd April 2017
    Sydney Opera House 2017 Access Program launched
    Accessible Arts Newsletter, March 2017:
    The Sydney Opera House has unveiled its 2017 Access Program, featuring more than 70 accessible performances, workshops and experiences to ensure the Opera House is open to all. 
    Underpinned by the Sydney Opera House’s Access Strategic Plan 2016-18, the 2017 program is the Opera House’s biggest yet, increasing the number of accessible performances available to the community.  
    Visit the Sydney Opera House official Media Release online here for the list of performances. 
    Alongside its year-round Access Program, the Opera House is making significant progress with its plans to open up more of the building to the public and improve access around the site for those with mobility issues. These essential works, which form part of Stage 1 Renewal of the Opera House, include greater access to the Concert Hall and Joan Sutherland Theatre, wheelchair accessible seating positions and new Box Office and Foyer lifts and escalators. 
    Sydney Opera House CEO Louise Herron AM said: “Accessibility is a major focus for us. As we renew the building for future generations we are looking at every possible opportunity to make the Opera House more accessible – from programming to the building itself."

    It's not OK for actors to 'black up'; nor is it OK to act out disability
    Carly Findlay, Sydney Morning Herald, 23 March 2017
    The disability community – people with disability and parents alike – is excited about Speechless, now screening on Channel Eleven. It's one of the first TV shows that does not depict disability as a tragedy, burden or something to be ashamed of ...

    Cara Liebowitz, NOS Magazine, 8 March 2017
    I love ABC’s Speechless. It is one of my favorite shows currently on the air. As someone with cerebral palsy, I’m beyond thrilled that someone like me is finally being shown on TV as just a regular character, not a “special” guest to teach the non-disabled characters the meaning of kindness. Micah Fowler, who plays JJ, actually has cerebral palsy, a fact that excites me to no end.

    Unfortunately,the show has a worrying trend of sort of sideways swiping a trope or stereotype about disability, but not directly subverting it. It’s like after the first few episodes, the show lost its nerve. And nowhere was that more obvious than the latest episode, O-S-Oscar P-A-Party ...


    The Shows Shaking Up Disability Representation
    David M. Perry, Pacific Standard, 8 March 2017
    'Speechless' and 'Switched at Birth' deliver great jokes, soapy family drama, and a primer in contemporary issues facing the disability community ...

    Oscars diversity debate must include learning disability
    Letters, The Guardian, 25 February 2017
    Diversity has long been an issue at the Oscars ... Last year’s #OscarsSoWhite campaign highlighted the lack of racial diversity. But disability has been overlooked in this debate, with even less of a voice for people with a learning disability ...

    Monday, 3 April 2017

    Casting call

    Seeking Experienced Actors With Disabilities for New Pilot
    StarNow
    We are creating a new pilot which will require a large group of actors with some experience, who also have a disability. It's an exciting tounge-in-cheek project set in a world where the majority of people have a disability of some kind, and those without are seen as taboo ...

    Targeted clerical position for person with intellectual disability: NSW Ombudsman's office

    This position is currently advertised on the NSW Government 'Work for NSW' website. Please share:

    NSW Ombudsman - Human Services Branch

    Targeted position for person with intellectual disability
    Administrative Officer, Clerk Grade 1/2, Part-time 2 days per week, Community Services Division, NSW Ombudsman

    Sydney Region / Sydney City

    Salary Range: $24,061 to $26,158 (package includes salary, employer superannuation and annual leave loading)

    Role: To provide administrative help and support including data entry, typing, filing, photocopying, and other jobs that the Community Services Division needs help with to do their work.

    Friday, 31 March 2017

    Weekend reading and viewing: 1 - 2 April 2017


    Alastair McEwin on Fighting the Good Fight
    Down Syndrome Australia, 28 march 2017
    At the recent WDSD Parliamentary Morning Tea hosted by DSA and the Parliamentary Friends of Disability at Parliament House Canberra, we were fortunate enough to have Disability Discrimination Commissioner Alastair McEwin deliver a speech ...

    ‘Having a sister with Down’s Syndrome has enriched our lives’
    Claire Howie, Belfast News Letter, 22 March 2017
    ... It wasn’t until I was around 10 years old that I began to understand that Rachel had Down’s syndrome and I started to realise the implications this had on her and the rest of our family ...

    A world without Down’s Syndrome? Is the non-invasive test for Down’s a positive medical breakthrough or a tool for eugenics?
    Rebecca Bennett, University of Manchester Policy Blogs, 27 March 2017
    In 2018, Non-Invasive Prenatal Testing for genetic conditions and variations will be available on the NHS. Here, Professor Rebecca Bennett looks at the controversy over this test being used to detect Down’s syndrome and argues for a policy of voluntary non-directive screening and testing ...

    People with dual diagnoses should be included in the spotlight on World Down Syndrome Day
    Gillian Marchenko, Key Ministry, 7 March 2017
    ... As a parent of two daughters with Down syndrome, I think World Down Syndrome Day is fantastic. I really do. But you know what? Sometimes, it’s not so fantastic. Here’s why ...

    To the Brokenhearted on World Down syndrome Day
    Mumma Love, 22 March 2017
    ... For those who will forever love a person with Down syndrome who is no longer in this world. You have been lucky enough to know the light and love and hugs that only someone with Down syndrome can give, and now you bear the grief of living without them. You accepted the role of advocate, defender and cheerleader, and sometimes it’s hard to watch the children with almond eyes grow up when your child cannot. Know that you will always be a part of this T21 tribe ...

    You can’t be upside down in the gallery

    Leticia Keighly, Embracing Wade, 26 February 2017
    ...when Wade throws his shoes across the room and announces, ‘Wade does Not. Like. Putting. On. Shoes. ANY. MORE!’ part of me is truly thrilled at the excellent sentence structure and improving articulation. I high-five him mentally over his expression of choice and fearless nature in the way he speaks his mind. I admire the award-winning performance whereby he pretends to have a tantrum by melodramatically crossing his arms and pretending to pout ...

    New DSA Voice Editor sought


    Managing Editor: Voice, the journal of Down Syndrome Australia
    Down Syndrome Australia is seeking an experienced, highly organised professional to take on the role of Managing Editor of Voice. This is a unique opportunity to take on the responsibility of providing high-level management, quality assurance and content development of a journal published three times a year.

    The Managing Editor has responsibility for developing the themes and content, commissioning articles, writing and editing copy, and managing the layout process, publication and distribution of each issue of the journal. This is a flexible, rewarding role for a person with expertise in publishing or journalism and who has a strong understanding of current issues in the disability sector. 

    This is a part-time consultancy role that may be based from home. For more information and to get a copy of the position description please email info@downsyndrome.org.au

    Expressions of interest for this position including a CV should be forwarded to Down Syndrome Australia by 26 April.

    Thursday, 30 March 2017

    News and commentary on the NDIS (64)

    Carmel Laragy, The Conversation, 29 March 2017
    Monday’s Four Corners program, Fighting the System, was deeply disturbing viewing. It detailed shocking sexual abuse allegations of two residents at a group home for people with disabilities.

    ... If the NDIS is implemented in accordance with its legislation, it could mitigate some of the abuse and the distress experienced by people with disability. But it won’t be able to address all the other issues raised by Four Corners ...


    If I had my time again ...
    Rob Woolley, Disability Services Consulting, 28 March 2017
    ... I’ve worked in either the Barwon, Hunter or ACT trial site since day one of the NDIS and speaking as a Provider, it’s given us a whole new set of challenges to work with. Every day is a learning experience working in and around the NDIS, and some of these lessons have been lightbulb moments while some have been hard-fought and ground out through lots of costly mistakes.

    I am regularly asked “If you could wind back the clock and do something differently, what would it be?”. These are things I wish I had known three years ago ...


    NDIS housing rules for people with a disability could be life-changing
    Libby Calloway, Kate Tregloan, The Conversation, 23 March 2017
    The National Disability Insurance Scheme (Specialist Disability Accommodation) Rules were tabled in federal parliament in mid-March. The new rules offer the possibility of an inclusive Australian society that enables those people with the highest disability-related support needs to have equal access to mainstream services including housing ...

    Privatising NDIS services could be a repeat of the VET-fee disaster
    Rod Sims, Sydney Morning Herald, 14 March 2017
    Say the word privatisation and chances are you will get a passionate response either for or against. While the privatisation of infrastructure can and should yield considerable public benefit, we often see the privatisation of public assets done badly and see rising prices where usually the reverse should occur ...

    And the winner is ... culture
    Vanessa Toy and Roland Naufal, Disability Services Consulting, 13 March 2017
    We’ve seen enough rounds of the NDIS to declare culture as the winner. Culture is the dominant force in organisations. We often use one of Rob Woolley’s favourite sayings culture eats process for breakfast, because culture has both the appetite and the power to override any process-driven management effort. Attend well to culture and it will support all your efforts. Ignore it and it will devour any strategies that do not align with it ...

    Prisoners are excluded from the NDIS – here’s why it matters
    Jesse Young and Stuart Kinner, The Conversation, 14 March 2017
    The National Disability Insurance Scheme (NDIS) is designed to provide access to personalised supports and services for all Australians with a disability. However, the NDIS specifically excludes prisoners ...

    Building an Ordinary Life
    Wendy Williams, Pro Bono News, 6 March 2017
    ... (Matthew Wright) has personal experience of disability being partially deaf and a part of Australia’s signing deaf community (fluent in Auslan).He is a passionate believer in the dream of the National Disability Insurance Scheme for people with a disability to live “an ordinary life” as part of the community.
    In his role as branch manager design and inclusion, his team consults with individuals, stakeholders and peak bodies to ensure that their views and opinions are reflected in NDIS projects and key decisions.

    NDIS must have a consistent national model with all in!
    Australian Federation of Disability Organisations
    , 3 March 2017
    In light of recent media activity, the Australian Federation of Disability Organisations (AFDO) reiterates its support for a national approach to the NDIS. This includes WA joining the complete Commonwealth NDIS to ensure Western Australians with disability are not compromised by a multi-layered system.

    “We are concerned that the WA government is not listening to people with disability when it comes to the future provision of services and supports. People with disability are clear they want WA to be a part of the national NDIS system,” said Mr Ross Joyce, AFDO CEO ...


    Norman Hermant, ABC News, 3 March 2017
    The number of people joining the National Disability Insurance Scheme (NDIS) jumped dramatically in the last three months of 2016, according to official figures. Close to 26,000 people signed on — three times the number who joined in the previous quarter ... The latest numbers are a big turnaround from the first quarterly report of the scheme's "transition" phase, when only 7,400 new participants were enrolled. That was well below initial targets ...

    Pace of NDIS rollout a cause for concern (audio 8m)
    Heidi Pett, RN Breakfast (ABC Radio), 17 February 2017
    This week, the Coalition attempted to lash funding for the National Disability Insurance Scheme to the sinking ship of their welfare omnibus bill.

    But, as the political bickering continues, those in the sector are worried the scheme itself is taking on water. Disability advocates say the pace of the national rollout has led to inconsistencies and a lack of oversight, leaving many participants worse off ...

    Mornings, 702 ABC Radio, 21 February 2017 (audio file 17m 18s)
    The current and former Disability Discrimination Commissioners, Alastair McEwin and Graeme Innes, joined Wendy Harmer to vent their frustration following last night's Q and A discussion on the NDIS funding. Alastair wants politicians to stop and think what it would be like to not be able to get out of your house on a daily basis. He and Graeme Innes want NDIS funding to be viewed as an investment in getting people with disabilities out working, socialising and contributing to the community '''

    NDIA recruits Cate Blanchett to voice new avatar

    Byron Connolly, CIO, 22 February 2017
    The National Disability Insurance Agency (NDIA) has recruited Oscar winning actress Cate Blanchett as the voice of Nadia, an online virtual assistant who speaks, writes and chats online and answers common questions about the national disability insurance scheme ...


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    NDIS and Me
    People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.


    Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.

    Two other closed Facebook groups (only members can see the posts) that you might find useful for answering particular queries are:
    • NDIS Grassroots Discussion - a large group run for and by people with all kinds of disabilities, and welcoming of carers - the administrators are very experienced in managing discussions that can become robust at times, as criticism of the NDIS is raised
    • the newer and smaller I Love NDIS aims to promote discussion of individual's successes in putting their plans together and implementing them.

    Wednesday, 29 March 2017

    Regional workshops for families, on inclusive education

    One of the Kids
    4 April 2017 - Bathurst
    5 April 2017 - Lithgow
    6 April 2017 - Katoomba
    7 April 2017 - Emu Plains
    Family Advocacy
    Come along to learn about inclusive education, hear stories of success from the regular classroom, and think about how inclusion can work for your child!

    Inclusive Research Network is looking for new members

    The Centre for Disability Studies at Sydney University is calling for new members of the Inclusive Research Network:
    Inclusive Research is about people with intellectual disabilities doing research, not having research done on them. 
    Our motto is “Nothing about us without us.”
    Are you a person with an intellectual disability who has ideas or thoughts about what’s important? 
    We are the CDS Inclusive Research Network
    We are looking for new members, and we meet once a month at CDS, Camperdown.