Weekend reading and viewing: 29 - 30 April 2017

I knew my daughter and her friends were awesome, but I had no idea just how awesome until today. Devon, my 20-year-old awesome girl who happens to have Down Syndrome, goes to Highline College as part of the Achieve program ... She tripped running to get across the street last Tuesday trying to catch the light rail breaking her ankle. She didn’t know her ankle was broken, but she was with her so called “disabled friends” who made sure she was safe, and helped her get all of the way home and got a hold of my wife to make sure she didn’t have to try to ride her bike home. They were a platoon of friends who knew exactly what to do, elevation, ice, help, who to call, they were even prepared to call an ambulance ...

OMG

Sean Adelman, Eximius

25 April 2017

NOS Magazine published an anti-choice and a pro-choice piece, back to back, last week ...

Abortion and Disability: Pro and Anti

David Perry, How Did We Get Into This Mess? 

24 April 2017

“I Don’t Feel at Home in This World Anymore” won the Grand Jury Prize at Sundance in January and with good reason. First-time writer-director Macon Blair created a gem that mashes up a comedy-crime-revenge-thriller buddy film wrapped in a female-driven plot that may be the first film ever to crush the notion ‘retard’ is a funny word ...

Feeling At Home — A Chat With Filmmaker, Macon Blair

Kari Wagner-Peck, Good Men Project

26 April 2017

If you have not seen the TedX talk by Torrie Dunlap of Kids Included together, then you are missing out on one of the most cohesive explanation of the different models of how we view disability. After watching this 17 minute video you won;t be able to view disability the same way ...

The real problem with disability is how we think about it

Think Inclusive, 2015 

(Video and Transcript)

... That’s what Kari Wagner-Peck yelled at a man who used the “R-word” in her son’s presence. Wagner-Peck, a Portland, ME-based blogger whose son has Down syndrome, says she felt as if the man understood her when she told him not to use language like that again ...

Putting a Stop to the 'R-Word'

Sabrina Sooknanan, NY Metro Parents

24 April 2017

What your local MP can do now about Deadly Disability Discrimination

The Advocacy Team at NSW Council for Intellectual Disability is calling for community follow up action to last month's Parliamentary Forum on the Deadly Cost of Disability Discrimination in the NSW health service for people with intellectual disability:

Michael Sullivan (Chair NSW CID), Fiona McKenzie
(Vice Chair NSW CID) and NSW Minister for Disability
Services, Hon Ray Williams

We thank both the Minister for Disability Services, Hon Ray Williams, and the Shadow Minister for Disability Services, Hon Sophie Cotsis, for both speaking at the Forum.

We have told all NSW MPs:

• Almost 40% of people with intellectual disability are dying from preventable deaths in NSW
• People with intellectual disability are dying on average 27 years younger than the general population
• Ignorance, inadequate training and discrimination within our health services are key reasons this is happening

Now we have an urgent request for our MPs: 

The NSW Government’s Ageing, Disability and Home Care (ADHC) agency runs specialist health care services. These services help people with intellectual disability get the specialist health services they need. However instead of maintaining and expanding these services, the NSW Government is slowly closing them down.

Next year ADHC itself will close down and the money ADHC uses to fund these services will go to the NDIS.

We believe NSW Health should take responsibility for funding these services from next year, but so far Health Minister Brad Hazzard has been silent on this issue. The health outcomes are already bad for many people with intellectual disability. Closing down these services will make them worse. We need a commitment from all MPs that they will strongly advocate for NSW Health to maintain and expand these ADHC specialist health services.

Please help us keep up the pressure and take the following actions: 

• Phone, email and arrange to meet your local MP, tell them about the unacceptable high number of preventable deaths for people with intellectual disability, and ask them to support the maintenance and expansion of these important ADHC specialist health services.

• Phone and email the Minister for Health Hon Brad Hazzard and the Shadow Minister for Health Hon Walt Secord and ask for their commitment to the ongoing funding of the maintenance and expansion of these ADHC specialist health services.

You can find a guide to emailing and phoning MPs and all their contact details in this blog about the parliamentary forum. 

If you need help in preparing for your meeting with your local MP we can run a workshop for you and your family, friends and colleagues either face to face or remotely. Contact us at advocacy@nswcid.org.au

We will have the videos from the Parliamentary Forum available to view shortly. In the meantime we ask you to contact your local MPs and help us end Deadly Disability Discrimination.

Intellectual Disability Healthcare: online courses from University of Queensland

The University of Queensland now offers three courses in its online program Intellectual Disability Health Care. Course instructors are Prof Nicholas Lennox and Miriam Taylor from the Queensland Centre for Intellectual and Developmental Disability, University of Queensland:

Able-Minded - Mental Health and People with Intellectual Disability
Gain an understanding of mental health issues and ethical decision-making for people with intellectual disability.

Through my Eyes – Intellectual Disability Healthcare around the World
Learn, from personal stories, the daily life and challenges faced by those with intellectual disabilities.

Well and Able - Improving the Physical Health of People with Intellectual DisabilityLearn how to help those with intellectual disability achieve better health.

Education matters

My daughter with Down syndrome deserves to be in a regular classroom

Heather Avis, Good Housekeeping, 15 April 2017
... we found ourselves catapulted into a world we knew little about and quickly did all we could to figure it out. We discovered this "Down syndrome" thing is pretty incredible ... As it wove itself into the normalcy of our day-to-day lives, I would often catch myself looking around trying to figure out how I got so lucky. It was as though there was this secret club of people who get to do life with Down syndrome, and somehow, I was let in.

But the world of Down syndrome is not all lazy rivers. Over the past 8 years, I've spent more time in raging rapids, clinging onto a rock for dear life as my daughter has undergone lifesaving surgeries and spent way too many hours in doctor's offices. And as we have entered the world of public schools, the taste in my mouth has been anything but sweet ...

Response to Senate report on students  with disability: some positive, but weak

Catia Malaquias, SWJ IncludEd, 2 April 2017
The Australian Government has quietly tabled its Response dated March 2017 to the Senate Committee’s Report entitled “Access to real learning: the impact of policy, funding and culture on students with disability” (released on 15 January 2016) ...

Australian Government launches 'Leading Learning 4 All' website

Catia Malaquias, SWJ IncludEd, 8 March 2017

... the emphasis of the website on school leadership (is) to promote an inclusive school culture, to develop, mentor and support inclusive teaching practices and to foster collaborative relationships with parents of students with disability – each cornerstones of a robust inclusive education system ... Although we have previously expressed our reservations about a “special education” association like ASEPA being tasked with developing inclusive education resources for regular mainstream schools, we acknowledge that the website provides access to a wealth of useful information, tips and resources for principals and teachers in mainstream schools to better include students with disability ...

Do we really believe in inclusion?

Chris Wejr, Think Inclusion, 14 February 2014
As an education system and society, we have made huge strides in the inclusion of students with visible disabilities in our classrooms, groups, sports, and friendships. I wonder, though, if we have made as much progress in including ALL students… especially those who appear on the outside to be similar yet are different (or perceived to be) on the inside. I am not talking about the act of everyone having a seat in a classroom; I am talking about having a mindset of real inclusion ...

New musical theatre class: St Ives

Image: Applause Musical Theatre Academy logo 

 Image: Becky (a young blonde woman who has Down syndrome), a character from the TV series Glee, in cheerleader costume. 

Caption: Doesn't your teen deserve some Applause?

Text of the poster (available as an image on the Applause Musical Theatre Academy Facebook page):

Applause Musical Theatre Academy

Build confident, creative kids through performance.

Applause Musical Theatre Academy is starting a new class in Term 2 for teens with special meeds on 

Thursdays from 6.00 pm - 7.00 pm in St Ives.

This class will provide your teen (from Year 6 to 12) with an avenue to express him/herself creatively and freely, and build confidence not just in performing.

Your teen will learn to song, dance and act songs from popular musicals such as High School Musical, The Wizard of Oz and The Sound of Music.

Drama is also taught through fun acting exercises.

With two music-qualified, industry experienced professionals teaching the class and love piano accompaniment, this is the real deal.

There are performance opportunities so your teen will get moments toshine performing on the stage in front of an audience.

Image: Becky from the TV series Glee, in cheerleader costume. Caption: Doesn't your teen deserve some Applause?

Register for our free trial class on Thursday 4 May here: 

www.applausemta.com.au/enrol-now.html

• If you are sure your teen will love this class, then pay the $25 registration fee and your teen will get a free Academy T shirt worth $25.

For more information call Ingrid on  0405 495 099 or email ingrid@applausemta.com.au

Down Syndrome Australia raises concerns over use of R-word by AFL player

24 April 2017

Down Syndrome Australia was extremely disappointed to learn that footballer Heath Shaw used the term ‘retard’ at a football match over the weekend in reference to another player. The use of this word is extremely offensive to people with an intellectual disability and there is no excuse for its use. It is a hurtful term which has a long history of being used to bully and demean people with an intellectual disability.

Down Syndrome Australia recognises that Heath Shaw quickly apologised and acknowledged that the use of this term was inappropriate. At the same time, it is important to understand how damaging the use of such a term by a high-profile athlete is to community attitudes.

“Despite progress in understanding of disabilities, people with an intellectual disability face social isolation and lack of community understanding. In a recent survey of more than 800 families of people with Down syndrome, nearly a third indicated that they had experienced stigma and discrimination in the community. The casual use of the deeply offensive R-word by high profile Australians reinforces stigma and negative attitudes and has a significant impact on how the community views people with a disability”, said CEO Down Syndrome Australia Dr Ellen Skladzien.

Down Syndrome Australia will be writing to the Australian Football League to call for further education of AFL players on issues around disability and appropriate use of language.

It should be noted that the AFL has been proactive in disability awareness. They have supported the Fiona McBurney Match Day Experience which enables people with Down syndrome to participate as part of the match-day umpire team. This program provides a unique opportunity for people with Down syndrome as well as raising community awareness and understanding about Down syndrome.

Down Syndrome Australia looks forward to working with the AFL to build a better understanding of disability within the AFL players and ensure that the use of this inappropriate word is not repeated.

People with Down syndrome

At Home With Calligrapher Kanazawa Shōko—Down Syndrome and Independence

Nippon.com, 13 April 2017

Kanazawa Shōko is an acclaimed calligraphy artist with Down syndrome. At the age of 30 she moved into an apartment to live alone—another feat that most people would consider impossible for someone with her disability. We take a peek at her daily life in a residential district of Tokyo ...

Worker with Down syndrome celebrates 25th anniversary with hospital

Brooke Bednarz, News Chanel 25, 9 April 2017

... Bobby Henry has worked at McLane Children's, previously King's Daughters, for 25 years. And while he makes everyone around him smile, he thinks his job is just to "pick up trash and laundry," Henry said.

But, he does so much more than that ...

"He's the love-light of my life" - Intellectually disabled couple reveal normal life

Sarah Harris, New Zealand Herald, 9 April 2017

... The couple, both 35, have lived together for 10 years, and say they have a relationship with all the normal ups and downs. Pemberton believed her personality was a more defining factor than her Down Syndrome ...

This link was previously posted in 'Arts news':

• First-time playwright brings his experiences with Down syndrome to the stage

News and commentary from and about the broader disability community

New research shows role-playing disability promotes distress, discomfort and disinterest
Hiram College, Science Daily, 12 April 2017
Disability simulations often result in feelings of fear, apprehension and pity toward those with disabilities, new research concludes ...

The Ongoing Negotiations of Living Life With a Disability
Rachel Kolb, Pacific Standard, 18 April 2017
The line of thinking often goes like this: Disability is expensive. People with disabilities are in the minority, so costs could be better spent on projects that benefit more people. What’s more, retrofitting spaces and processes for accessibility is a hassle. Whenever accessibility provisions are granted, the person with the disability ought to be profoundly grateful others took the trouble to make it happen. And, anyway, if you’re requesting accessibility services, do you really need them? Couldn’t you just do without?

My Journey with Disability Language and Identity

Andrew Pulrang, Rooted in Rights, 10 April 2017

... The more I thought about it, “identity first” language started to again change how I thought about my disabilities. I stopped worrying about whether or not my disabilities “define” me, and started to embrace the fact that like it or not, I am part of a community, a shared identity. I’m disabled. And I do like it ...

We are failing our most vulnerable even in their own homes

Colleen Pearce, Brisbane Times, 4 April 2017
Just one day after the ABC aired last week's Four Corners investigation into taxpayer-funded group homes for the disabled, my office had a call about an extremely troubling case of violence in a home for people with disabilities in Victoria ...

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

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 ...

Superbaby and Eugenics: He called my daughter lightning

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 ...

The Greatest Danger of Down Syndrome

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 ...

Being Ethan's Mum

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 ...

That's Nice (Part Two Of A Series)

Dave Hingsburger, Of Battered Aspect 

17 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

• An Easy Read version of this web page is available 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.

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 ...

Developers seize on disability-friendly apartment opportunities as NDIS needs soar

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 ...

Shared ownership can help make housing affordable for people with disability

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 ...

____________________________________________

• Previous posts about the NDIS

• Page of links to online sources of information about the NDIS

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

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.

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’s Travels: buses and beyond…

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 ...

Tips to help empower adults with Down syndrome

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!” ...

Tears of Strengths

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 ...

Us and Them Full Circle

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 ...

Never hidden: Growing up with Down syndrome

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

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.

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

• Click here for Down Syndrome NSW events

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 

• All current events listings  

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. To find out more, contact the Education and Training team on 02 9280 4744 or education@carersnsw.org.au

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)

Cuts to the $22 billion NDIS behemoth would cost more in the long run

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

• All of the submissions received are listed here, with links to different formats.

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 ...

• NSW Council for Intellectual Disability commentary

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.

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

• The Inclusive Research Network is looking for new members (reposted from 29 March 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 Syndrome, Sleep 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.

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.

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.

You Can't Ask That - Series 2, Down Syndrome

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 ...

Here, 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 ...

Skye, our granddaughter

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 ...

How did you make your peace?

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.

'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

Beauty and The Beast Actually Isn't About Inner Beauty At All

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 ...

The Right to Choose And How Far Does It Go: Words

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 ...

How Murder Victims With Disabilities Get Blamed For Their Own Deaths

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 ...

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 ...

This teenager with Down's syndrome addressed the UN in Geneva

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 ...

• Link to Olivia Hargroder's address to the UN in New York (previously posted in Weekend reading: 25 - 26 March 2017)

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

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

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.

• 2017 CREATEABILITY applications are now open

Registrations for CREATEABILITY 2017 will close at midnight on Sunday 23rd April 2017

• All details

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 ...

Speechless O-s-oscar P-a-rty reinforces a dangerous stereotype

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 ...