Art at Sydney Children's Hospital, and a film award

The exhibition Play presents an opportunity to see the work of thirteen artists from Studio A, a professional track initiative of Studio ARTES, a supported studio based in Hornsby. The exhibition includes the artwork of five artists who have Down syndrome, among others:

Nadia Lolas and Laura Jones, The Secret Garden (Triptych), 2016,
acrylic on canvas, 91 x 3,312 cm

Studio A: Play 

Sydney Children's Hospital, 1 High St, Randwick 

1 September - 24 November 2016

Please join us on Thursday 1 September, 5:30 - 7:30pm at the Sydney Children's Hospital for the opening of the Spring Art Exhibitions featuring the work of Studio A represented artists.

The exhibition is made possible through the Sydney Children's Hospital Foundation's Art Program, which aims to use the visual arts to "engage, inspire, and improve the lives of our young patients, their families and carers".

Film Award
In other arts news, congratulations to everyone at Bus Stop Films who was involved in the short film Heartbreak and Beauty which has won the audience choice award at Atlanta Underground Film Festival.

Resources

• Recordings from the (US) National Down Syndrome Congress 2016 Convention

From (US) National Down Syndrome Congress e-News, August 2016

... This is traditionally the time of year that we get sooo many questions about the successful inclusion of students with disabilities in the general education classroom. Here are a few things that may be helpful as your child goes back to school. Time after time, we refer families to these articles, written by Cheryl Jorgensen: Inclusion Works Parts 1 and 2  We also really like this webinar, presented last summer by PEAK Parent Center in Colorado. Some things you will hear:  What is inclusive schooling? What is the difference between accommodations and modifications? “All students are General Education students first.” “Fair doesn’t mean every student gets the same thing. Fair means every student gets what they need.” So much practical advice, it is well worth an hour of your time to listen to this presentation.  And here's a list of responses to “When They Say…”, the things that parents often hear from educators. These are great talking points to keep in mind during your conversations with school staff who may not share your vision. 30 Days to the Co-Taught Classroom: How to Create an Amazing, Nearly Miraculous and Frankly Earth-Shattering Partnership in One Month or Less Dr. Paula Kluth and Dr. Julie Causton, 2016 In just 30 days, they will introduce you to the information, competencies and habits you will need to become a great co-teaching partner. The authors will help you get to know your co-teacher, understand each of your roles, improve your planning and co-planning skills, expand the structures you use to teach and support students and even celebrate your accomplishments ... Achieving inclusion: What every parent should know when advocating for their child Julie Causton-Theoharis and Christi Kasa,  free download via Family Advocacy (repost) ... Despite (the) known benefits, inclusion is still not a given for many students with disabilities. As parents, you play an essential role in advocating for inclusion for your child. Whether you are in the early stages of understanding your child’s individual needs, already advocating for an inclusive classroom or hoping to understand inclusion best practices, the information in this article is vital. It is important to understand exactly what inclusion is, why it is essential and how to work with your school team to achieve it. This booklet was developed to help parents with their thinking on how best to advocate for their child when achieving inclusion.

National survey of carers' respite needs

Carers NSW is conducting a survey to understand carers' respite needs and experiences to inform the advocacy work of all Carer Associations.

Please take 10 or 15 minutes to complete this anonymous survey by 23rd September.

• Link to survey

Campaign for Paralympics category for people with Down syndrome

Interesting to see this long-standing campaign reach the mainstream media:

Swimmers with Down syndrome missing Paralympics under 'unfair' rules
Emily Laurence, ABC News, 29 August 2016

With the countdown on to the Rio Paralympics, Australian swimmers with Down syndrome say unfair rules are excluding them from making the Games. Australia recently scooped the pool at the 9th Down Syndrome World Swimming Championships in Italy ...

Step Up for Down Syndrome 2016

Step UP! for Down syndrome is an annual event that recognises the abilities and achievements of people living with Down syndrome. You are invited to join us and help celebrate Down syndrome awareness month.  You can help us support people with Down syndrome and their families by making a donation or by joining us at one of our Step UP! events and walking with family and friends.  The annual event brings people together to celebrate, connect and raise funds to support people living with Down syndrome.  There will be a barbecue, stalls, raffles and entertainment provided on the day. Register online and/or donate - links to each event If you cannot attend an event we encourage you to support those participating in the walk by making a tax deductible donation. Links to Step Up events nationally

Weekend reading and viewing: 27 - 28 August 2016

A Glorious Adventure
Paul Critchlow, Orange Juice Flavour Sky, 12 August 2016
Emily was born 24 years ago today, on the twelfth of August 1992. The Glorious Twelfth as it’s known.

What have I learned over the past 24 years?

What advice would I give to a parent whose baby is born today?

What are the things I know now that I wish I knew then?

Smiths Falls mother reaches settlement with Ontario over son's home care

CBC News, 19 August 2016

A Smiths Falls, Ont. mother is celebrating after reaching a human rights settlement with the Ontario government to keep her adult son, who has Down syndrome, living independently after they were told he'd have to move to a long-term care facility ...

Lord Rix was told to put his daughter into a home. Instead, he fought for people like me
Ciara Lawrence, The Guardian, 23 August 2016
When his daughter Shelley was born with Down’s syndrome, Lord Rix was told by a doctor to “put her away in a home, forget about her and start again”. All I could think when I heard this was: what if the doctor had said that about me, or about my friends who have a learning disability?

"It's completely inappropriate": Australian Immigration deporting people with disabilitiesLaura Murphy-Oates, The Feed SBS, 25 August 2016
Last year a Bangladeshi couple, both doctors, had their application for permanent residency denied, after nearly a decade living and working in Melbourne. The reason may surprise you: their son has mild autism ...

The hidden history of eugenics - 4 part radio series

Natasha Mitchell, Earshot (ABC Radio National), 20 July - 11 August 2016

The ugly spectre of eugenics left a dark stain on the 20th Century, with the genocidal quest of the Nazis to breed a 'master race'. But the eugenic agenda reached much further and deeper still—into everyday laws and lives across the Western world—with profound consequences ...

Recent news on Alzheimer's and Down syndrome

Adult Down Syndrome Centre posted about Alzheimer's disease and the possibility of a vaccine on 4 August 2016, via their Facebook page:

Could a vaccine prevent and/or treat Alzheimer disease?  There is interest in this topic.  Could it be given to people with Down syndrome? 

There is a study in San Diego looking at safety of the vaccine in people with Down syndrome. 

We have started discussion about how the ADSC could be involved in the next phase of study that would focus on efficacy of the vaccine.

• Is a vaccine that protects against Alzheimer’s on the horizon?, Julie Nakis, Health eNews (Advocate Health Care), 28 July 2016

Aging Poses New Challenges For Those With Special Needs

Vikki Ortiz Healy, Chicago Tribune/TNS,  1 August  2016

... when the 56-year-old woman with Down syndrome began forgetting her work schedule, becoming disoriented around campus and feeling too confused to do her job in the mailroom, administrators at the Catholic facility moved her to a new program designed to meet a need that advocates say will only be more pressing in the years ahead: caring for people with disabilities as they age ...

(US) Alzheimer's Association issues $7M challenge to scientists to speed drug discovery

Global Down Syndrome Foundation, 2 August 2016

... “The importance of the 'Part the Cloud Challenge' from the Alzheimer’s Association cannot be overstated,” said Dr. Potter, who is director of the Rocky Mountain Alzheimer’s Disease Center and professor and director of Alzheimer’s disease research, Department of Neurology, Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine. “The million dollars, with a potential for another $3 million after two years, will certainly propel novel research forward towards a therapy for Alzheimer’s. For my research, the hope is that Leukine, an FDA-approved drug, may slow or even prevent the progression of Alzheimer’s disease. That would be a home run for everyone.” ...

Health matters

Action on the Turnbull government commitments on healthNSW Council on Intellectual Disability eNews, August 2016

As reported in our blog (click here) the Coalition, Labor and The Greens all made useful election commitments on the health of people with intellectual disability.

We have now seen the first actions on the Government’s commitments in new mental health guidelines issued to Primary Health Networks by the Department of Health. Some of the guidelines point out the need to specifically consider people with intellectual disability in consultations and design of programs. 

The guidelines are here. 

We also now have constructive relationships with some key people in the Department of Health and Health Minister Ley has agreed to meet with some local parents in her electorate to hear about their experiences with the health system. 

All of this is just a start but a big step forward from where we were with the Department of Health six months ago.

Onychomycosis -Toenail Fungal Infection 
Amanda Wojciechowski, Adult Down Syndrome Center,11 August 2016
Onychomycosis or toenail fungal infection is common among individuals with Down syndrome (DS). Toenail fungal infections occur due to the weak immune system of individuals with DS but also are more likely to proliferate if one has a minor skin or toenail injury, dry cracked skin on the toes or sweaty feet due to prolonged closed-toe shoe wear ...

• This article was first published on the Adult Down Syndrome Center Facebook page 1(1 August 2016) - a great source of new health information, and reminders about well known health matters. The paper cited above has been added to the Center's website as well.

Hidradenitis suppurativa (HS) and Down syndrome (DS): Increased prevalence and a younger age of hidradenitis symptom onset

George Denny and Milan J. Anadkat, Journal of the American Academy of Dermatology, September 2016 (published online 22 August 2016)
Hidradenitis suppurativa (HS) occurs in approximately 1% of the general population.1 It is characterized by recurrent inflammatory nodules, sinus tracts, and scarring, most commonly in the axilla and groin. The origin is unknown, but is most likely related to inflammation and immune dysfunction, combined with extrinsic factors.2 The relationship between HS and Down syndrome (DS) was noted in 1977 by Dvorak et al.3Since then, scattered case reports have been published but the mechanism underlying this association remains unidentified. Details regarding the relationship between HS and DS, such as effect on disease incidence and age of onset, are also lacking in the literature ...

• The full text of the article is available free online

Survey on communication barriers

From the Conexu Foundation:

What are your communication barriers? 

At work, at school, out and about? Do they stop you from getting involved? Do they stop you from reaching your potential? How can technology help? 

Take a few minutes to complete our national survey. Together we can break down communication barriers.

• See more here 

About the Conexu Foundation:

Conexu Foundation is the go-to national not for profit organisation in technology-based communication access for Deaf, hard of hearing and speech impaired Australians ...

... We ensure people with diverse communication needs are supported and inspired to embrace new technology and provide training to show individuals and their families how to get the most from technologies for their situation.

Our research programs focus on areas that make the biggest difference in peoples lives. Once we identify these needs, we have relationships with organisations both in Australia and globally, that allow us to understand what technology is available as it develops anywhere in the world. Where solutions exist, we trial these in Australia.

News and commentary on the NDIS (53)

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). Through Disability Loop you can:

• Find a great selection of resources relating to the NDIS
• Find out how the NDIS is working for other people
• Have your say about the NDIS
• Keep up to date with news and events about the NDIS

Disability Loop is a project that has been paid for by the NDIS. It is run by, and for, people with disability and their allies.

NDIS - the official website of the National Disability Insurance Scheme.

____________________________________________________

CID ConnectNSW Council on Intellectual Disability eNews, August 2016

CID Connect is our new online forum where you can ask and answer questions about how the NDIS might affect you. 

CID Connect is supported by members of our community engagement and information services team and allows anyone to log on for free and ask a question of the community as well as being able to browse around and see what other people have been discussing.
Every month we will have a new focus topic to help you be more prepared for the NDIS whether you are already on a funding package, are waiting for rollout or have no idea where to start. 

Currently, our topics include planning, supports and getting to know each other.

We encourage you to jump online and try out this amazing new tool. Be the first to contribute to what will become an valuable source of knowledge. Click here to check it out and participate!

Virtual Special Issue: Supported Decision Making

Research and Practice in Intellectual and Developmental Disabilities: RAPIDD, 28 July 2016

In this virtual special issue of Research and Practice in Intellectual and Developmental Disabilities, we bring together papers about decision making support for people with intellectual disabilities that have been published in the first three issues of the journal.

Ensuring effective support for decision making is a key challenge confronting mainstream and disability services systems. It is central to the rights based foundations of the National Disability Insurance Scheme being rolled out across Australia. Though there has been much debate about legal frameworks, there is little empirical research about supported decision making models or practice ...

Change Agents: Rhonda Galbally and Bruce Bonyhady on the birth of the NDIS
Andrew Dodd, The Conversation, 10 August 2016 (audio only)

The National Disability Insurance Scheme (NDIS) is the biggest social reform in Australia this century. By 2022 it will help half a million people access comprehensive disability support at a cost of around A$25 billion. On this program, two of the NDIS’ founders explain how they developed something so radical and comprehensive and then won support for the idea. Bruce Bonyhady is the chairman and Rhonda Galbally is a board member of the National Disability Insurance Agency, the body that implements the NDIS.

Launch of One Stop Shop for Disability Knowledge
Wendy Williams, ProBono News, 9 August 2016
A “one stop shop” for disability knowledge has been launched to help people navigate the new disability market under the NDIS.

She who pays the piper calls the tune: exploring self management and the NDIS

Lauren Hislop, InCharge, 15 August 2016

... In a previous post I wrote how I moved from my NDIS plan being managed by the NDIA (Agency managed or the Agency) to choosing a Plan Manager to help me manage my funds. My life has improved considerably.

I would like to explore Self Management for the future. I know people who are self managing. Flexibility, choice and control seem to be some of the positives of self-managing your NDIS budget. But I must admit to feeling very hesitant about it. My first thought was “I don’t think I have what it takes to self manage” ...

What’s going on with the float for people who self-manage their NDIS funds?

Libby Ellis, InCharge, 22 August 2016

This is the first post in a six-part series of confusion-clearing and myth-busting pieces about the NDIS! We hope it is helpful. As always, your feedback is welcome – particularly feedback where information you’ve received differs from what we’ve written here.

This piece is a confusion-clearing piece regarding the float for people who self-manage their NDIS funds ...

NATIONAL: Government response to NDIS payment problems criticised by Labor Matthew Doran, ABC News, 18 August 2016
The Federal Opposition has seized on reports some disability service providers have gone without payments under the National Disability Insurance Scheme (NDIS), suggesting the Government is dragging its feet and being secretive about a review into the problem ...

Shitstorm: A Short History of NDIS Implementation

Roland Naufal, Disability Services Consulting, 16 August 2016

... So is the NDIS broken? Hell no! The NDIS is a fabulous scheme and the Productivity Commission was spot on recommending it ... This article is about highlighting the factors that led to this mess in this first 6 weeks of implementation; factors that are not built into the scheme’s design. The ducks lined up early to get the scheme off and running then we had a bunch of nasty ducks and now we need to move on ... We can all positively address the fear, confusion and anxiety and really start to deliver on the hope, opportunity, choice and control the NDIS will bring ...

See the previous post for links to information events about the NDIS hosted by Family Advocacy in regional NSW.

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 

Flyer

Further details and online registration: Family Advocacy events pages

Addressing the abuse, neglect and exploitation of people with a disability 
NSW Ombudsman - a forum to explore safeguards that currently exist in NSW, the gaps, and what needs to be put in place in NSW and nationally, by the end of the NDIS transition. Free for people with disability, carers and family to attend.
24 November 2016 - Sydney

New from Woodbine House

Fine Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals, Third Edition

Maryanne Bruni, Woodbine House, 2016
The popular book, Fine Motor Skills for Children with Down Syndrome is now available in a completely revised third edition. The author, an occupational therapist and parent of an adult with Down syndrome, describes how the characteristics of Down syndrome can impact the acquisition and progression of fine motor skills. She presents a thorough overview of the building blocks of fine motor development, from infancy through to adulthood:

• Early arm and hand control 
• Stability 
• Bilateral coordination 
• Sensation 
• Dexterity 

... Woodbine House

Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don't React Method

David Stein, Woodbine House, 2016
... common behavior issues in children with Down syndrome can quickly become engrained and may even persist into adulthood. No parent wants that to happen, and thankfully, help is available! Dr. David Stein, a psychologist and Co-Director of the Down Syndrome Program at Boston Children’s Hospital, shares his approach to behavior management in this new book for parents.

Supporting Positive Behavior in Children and Teens with Down Syndrome examines how the brain of a person with Down syndrome works, how those differences impact behavior, and why bad behavior should not be viewed as a willful act. Governed by this new awareness, parents are in a better position to change and manage their child’s behavior using these guiding principles:

• Be proactive, not reactive
• Be consistent
• Use visual schedules and Social Stories to direct behavior
• Develop a token reward chart
• Keep gut reactions in check
• Teach siblings to ignore bad behavior
• Learn effective disciplinary techniques
• Know when professional help is neededSome of these parenting concepts are intuitive, others are not, but when they are followed consistently, children and teens with Down syndrome do their best behaviorally and the parent-child relationship remains as positive and loving as it should be 

... Woodbine House

• Current Woodbine House catalogue

Note - Woodbine House does not accept online orders from Australian buyers, but their titles are widely available from other booksellers.

Resources on hearing

This is Hearing Awareness Week in Australia. 

Conductive hearing loss is common in children with Down syndrome (and other forms of hearing loss can also occur), and most families are well informed about its management and importance (in the development of speech, for example). All newborn babies in Australia are now screened for hearing loss.

Hearing Loss in Children with Down Syndrome is a comprehensive fact sheet published by the Sydney Children's Hospitals Network, available online and to download as a .pdf file.

You will also find useful resources for providing information to other people in your child's life on the Hearing Awareness Week website, under the 'resources' tab, including a brochure about conductive hearing loss.

Review of NSW Guardianship Act

NSW Council on intellectual Disability eNews, August 2016:

The NSW Law Reform Commission is currently reviewing the NSW Guardianship Act and are looking for submissions. The Terms of reference for the review include models of decision making that should be employed for persons who cannot make decisions for themselves. 

The commission has produced background papers, a video and easy read guides and have an easy-to-answer Survey. Click here for more information.

People with Down syndrome

My Olympics: Volunteers with Down syndrome Deutsche Welle (DW) News, August 2016 ... a group of Brazilians with Down syndrome (have) been employed as Olympic helpers. Their passion and enthusiasm is helping to spread the spirit of the Games. Fife girl Abi set to make her dream Fringe debut Tanya Soon, Fife Today, 3 August 2016 Abi Brydon (23), who has Down's Syndrome and learning disabilities, is a student at the Inspire project, a programme created by Cutting Edge Theatre ... Nick's Hot Dogs, With Relish, Determination Susan Campbell, Hartford Courant, 18 August 2016 When he was a kid, Nick Glomb watched his mother prepare food for the family in her kitchen. He knew enough to stay out of the way — this was his mother's kitchen, after all — but it was inspiring in the way his mother made so much from scratch, and her preparations planted a seed ...

Weekend reading and viewing: 20 - 21 August 2016

An Undimished Life

Chloe Udaly, True Parent, August 2016

Late in my second trimester I was hit with the thought, “What if this baby grows up to be someone I don’t like?”

At the time, my worst fear was that my child would turn out to be a drug addict, a religious zealot, or a Republican. My partner and I didn’t want to know if we were having a boy or a girl. We didn’t pick a name or a color for the nursery in advance. It would all be a surprise. So my first big challenge was to trust that I’d be able to conjure up the kind of unconditional love that parenthood demands. I focused on letting go of my fears and expectations, and told myself that my most important job was to support this person in becoming the best “whomever” they were born to be. It never occurred to me that the course of that life—of all our lives—would be profoundly altered in the moments leading up to birth ...

It wasn't necessary
Dave Hingsburger, Of Battered Aspect, 14 August 2016
... I saw a man with Down syndrome walking, with great purpose, through the mall. He clearly had a destination and he clearly wanted to get there.

That's it. That's all.

Hardly worth a comment, except that it is. Nothing will ever change the fact that I come from a time where that would never have been seen, never imagined and therefore never attempted. I come from a time that he'd not be walking with purpose to a destination he wanted to get to, he'd be shuffling down a hallway with habit and boredom yapping at this feet. I still notice this. I still notice freedom. I hope I always do ...

Why We Chose to Forgo Down’s Syndrome Testing
Kemberlee Kaye, Legal insurrection, 15 August 2016
... Down’s Syndrome is not debilitating, nor does it make those gifted with an extra chromosome any less of a person. Yet despite the trend towards normalization and destigmatization of so many issues, conditions, and challenges, Down’s Syndrome is still viewed as cause and often encouraged as reason to prematurely end pregnancy ...

Annie Gets Her Own Apartment
Annie Niswander (slide show - click on the bottom right corner of each page)
This is the story about how my family and I helped to create the house that I live in and how I get the support I need to live on my own ...

Robert Perske, advocate for Richard Lapointe, others with disabilities, has died

David Owens, Hartford Courant, 15 August 2016

For much of his adult life, Robert Perske worked on behalf of people with developmental disabilities, becoming the voice for many. Over the last 30 years, he worked on behalf of those he believed were wrongly convicted of crimes ...

International news, perspectives

York prof denied residency due to son's Down Syndrome coming back to Canada

Michelle McQuigge, The Canadian Press, 10 August 2016
Ottawa has overturned a decision that saw an Ontario university professor denied permanent residency in Canada because his son has Down Syndrome.

Felipe Montoya had been working at York University as a tenured professor of environmental studies when he and his family submitted their application to Citizenship and Immigration Canada ...

... But Montoya says the decision handed down earlier this year was overturned last week through "ministerial intervention" on compassionate grounds ...

Persons with disabilities: An enabling force in India’s growth story Atul Raja, Hindustan Times, 10 August 2016
The 2011 census tells us that 6-7% of the population, or 70-90 million people, in India are disabled. The actual numbers are larger. According to a WHO estimate, there are 1 billion Persons with Disabilities (PwDs) globally — which means 15% of the world population, on average, is disabled. Logically, India too will have 15% or more PwDs. But that figure doesn’t show up in surveys and studies thanks to the fact that disability is a social taboo and largely goes unreported. This is in addition to the fact that the definition of disability framed by India fails to effectively identify all PwDs. The Persons with Disability Act, 1995, adopts a medical definition. In reality, society tends to view impairment beyond the medical definition ...

Living with Down's syndrome in Kinshasa, DRC
Kait Bolongaro, Aljazeera, 15 August 2016
In a suburb of Kinshasa, a tightknit community gathers for lunch in a backyard. It is one of the few spaces in the city where its members go unnoticed and their families enjoy a short reprieve from daily discrimination ...

New Zealand mulls data-driven disability plan
Eden Estopace, eGov Innovation,16 August 2016
The New Zealand government is planning to develop a Disability Plan that would ensure that government agencies have the data necessary to make informed, evidenced-based policy decisions on the disabled community ...

China vows greater support for disabled Xinhua, 17 August 2016
China aims to improve its support and protection of disabled people by offering them more customized public services and products in the next five years, according to a State Council plan released Wednesday ...

New York rap duo 4 Wheel City turn shooting tragedies into a positive mission 

AM Homes, The Guardian, 17 August 2016

Staged at the United Nations headquarters in New York and performed by disabled musicians, the Beautiful Concert – in honor of the 10th anniversary of the Convention on the Rights of People with Disabilities – aimed for an air of sedate harmony ...

World Down Syndrome Congress - Glasgow, Scotland
24th - 27th July 2018 

Abuse of students with disability in Australian schools

Family Advocacy has released the following statement in light of the 7.30 report (on ABC TV, Tuesday 16 August 2016) on abuse of children with disabilities in NSW schools:

NSW Government failing to deal with abuse of children with disabilities
The NSW Government received 64 complaints of abuse from the families of students with disabilities over the 21 month period from 6/01/2014 to 26/10/2015, but only one complaint resulted in withdrawal of employment, and only thirteen resulted in any disciplinary action being taken at all.

The complaints, accessed through Freedom Of Information, only include those instances deemed reportable conduct, and thus are likely to be a small portion of alleged abuse overall.

Family Advocacy Executive Officer, Cecile Sullivan Elder, stated that:

We believe children with disability are being abused in our schools, in light of incidents highlighted by the ABC 7.30 report last night and complaints from around Australia. The fact that all but one teacher in NSW in over sixty complaints are still teaching strongly suggests a failure of the Department of Education to prioritise the vulnerable children who are in their care. This inaction indicates a possible culture within the NSW education system of accepting or downplaying the occurrence of abuse and neglect when it comes to children with disability.

She continued:

This situation needs to be thoroughly investigated by the NSW Government. The complaints shown in the FOI are likely to be the tip of the iceberg of abuse of children with disability in schools. This comes from devaluing of children with disability, where low expectations and exclusion in special schools and units is the norm.

This revelation comes in the wake of the ABC 7.30 report last night, which highlighted a number of instances of alleged serious abuse in NSW schools. A number of Australian organisations also recently submitted 55 cases of human rights violations against children with disability in schools to the United Nations. Of these cases, the organisations state:

Overwhelmingly, children’s legal guardians were not satisfied with the results of their complaints. Of note, a theme emerged that internal inquiries conducted by Departments of Education protected teachers and schools (See http://autisticfamilycollective.org.au/schoolrights/ ).

School is not always a safe place for students with disability – this has to change
Sally Robinson, The Conversation, 28 July 2016
The United Nations has been asked to investigate dozens of incidents in which children with disabilities were allegedly assaulted, locked in dark rooms and restrained in Australian schools ...

Last days to book for 'Quality Living for Individauls and Families'

• Register now
• Program (download flyer)

Topics include -

• Individual quality living - principles, concepts and application
• Family quality living – issues for families
• Summary of recent research – recommendations for practice 

Opportunities for small group discussion surrounding

• Early childhood
• School aged issues
• Young adulthood – further education, employment
• Ageing and dementia

Representation of disability in the media

None of these articles is about people with Down syndrome, or intellectual disability, but many of the issues raised are applicable across all disabilities:

What to consider when the media asks you for your story (about life with ichthyosis or facial differences or disabilities)

Carly Findlay, 14 September 2016

... Subjects of articles and programs are often portrayed as a victim or hero. Commenters can be brutal. (And even when you write your own story, there's a risk of the sub-editors sensationalising a headline.) ...
Raising the profile of disability on TV
Seenit, 25 July 2016
At a time when people with disabilities continue to be underrepresented in TV. Over at Ability Superstore, we looked at some of the most successful TV series that have managed to represent those with disabilities, and how those characters are portrayed ...
More than ‘the disability show’
Chris Barton, Waterloo Region Record, 15 August 2016
Television's track record for telling stories involving individuals with special needs is spotty, and particularly tricky when it comes to comedy. That's something that "Speechless" executive producer Scott Silveri sounded well aware of during a panel at the Television Critics Association summer press tour in Beverly Hills ...

Gerard O'Dwyer in 'Off the Record': starts tonight, Carriageworks

Force Majeure's Danielle Micich goes Off the Record

Nick Galvin, Sydney Morning Herald, 15 August 2016
The usual process for producing any stage performance is first to consider the nature of the work then set about casting the roles.

But that is just one of the conventions Off the Record, a new collaboration between Force Majeure and Dance Integrated Australia, seeks to challenge.

"We've worked in reverse," says co-director Danielle Micich​. "It was like, 'Let's see who's out there and make the work about them' ...

10 Minutes with Gerard from OFF THE RECORD

Majeure News, August 2, 2016

... I love performing solo pieces. I love dance or basically anything with movement ...

RUCKUS posted on Facebook, 5 August 2016:

RUCKUS member Gerard O'Dwyer is having a bumper of a year! He's been in a feature horror film, flown to Cambodia for an international creative exchange and starred in a major theatre production. Now he's in 'Off the Record' by dance company Force Majeure.

• Off the Record will be at Carriageworks 17 - 20 August
• Bookings

Research news and commentary #9 for 2016

Perceptions of Crime and Safety focus groups NSW CID e-news, July 2016 City of Sydney in partnership with University of Sydney, Institute of Criminology are undertaking research to gauge community views and perceptions on crime and safety issues and are looking for volunteer participants, including people with disability. Their aim is to collect data from a broad demographic who live, work or study in the City of Sydney LGA. Click here for more information.

A research participation opportunity from researchers at the University of Newcastle:

Do you have a child with a developmental disability? 

Researchers at the University of Newcastle would like to invite you to complete a survey exploring your experience of being a parent of a child with a developmental disability. In particular, we are interested in how cultural factors may or may not affect your experience. We are also particularly interested in the positive and the negative experiences that you may have had and how this has affected you in your day-to-day life. 

If you are interested in participating, click on this link. It will take you to our website where you can read more about the study before deciding if you would like to complete it or not. On the webpage you can also find a link to the survey.

The profile of social functioning in children with Down syndrome

KB Næss et al, Disability Rehabilitation, July 2016,  21:1-12. [Epub ahead of print]
Background: Practitioners and researchers have asserted for decades that social functioning is a strength in children with Down syndrome (DS). Nevertheless, some studies have concluded that children with DS may be at greater risk of impaired social functioning compared to typically developing controls. This cross-sectional study explores the profile of social functioning (social capabilities and social problems) in six-year-old children with DS, compares it with that of typically developing children and reveals possible differences in predictors between groups ...

Conclusion: Interventions for children with DS should strongly focus on integrating vocabulary skills and social functioning starting at an early age. Implications for Rehabilitation Children with Down syndrome need help and support in social functioning. Systematic training to optimize social capabilities and to prevent social problems should be prioritized. Structured and explicit learning of words important for social interaction with peers and for conflict solutions should be emphasized. Integrated interventions focusing on social functioning and vocabulary should begin in preschool to prepare children for participation in mainstream education.

• The abstract is free online, access to the full text of the article requires purchase.

Family caring of older adults with intellectual disability and coping according to loci of responsibility

Teresa Iacono et al, Research in Developmental Disabilities, Volume 57, October 2016, pp 170–180

Background: A complex interplay of factors is evident in the response of family caring for older adults with intellectual disability (ID). The aim of this study was to explore the interaction of these factors ...

Conclusion: The loci of responsibility provide a means to understand carers’ appraisal of their role and the degree of control they have over it, and may account for varied coping strategies adopted.

• The abstract is free online, access to the full text of the article requires purchase.

Outcome of adenotonsillectomy in children with Down syndrome and obstructive sleep apnoea Mieke Maris et al, Archives of Childhood Diseases, 2 August 2016 Objective: To evaluate the outcome of adenotonsillectomy (AT) in a cohort of children with Down syndrome (DS) and obstructive sleep apnoea (OSA) ... Conclusions: AT results in a significant improvement of OSA in children with DS without a change in sleep efficiency or sleep stage distribution. Severe OSA was associated with a larger reduction of OSA severity. Almost half of the children had persistent OSA, which was not correlated to age, gender or BMI z-score. The abstract is free online, access to the full text of the article requires purchase.

News and commentary from the broader disability community

Supporting parents with intellectual disability
NSW CID e-news, July 2016
Various courses and dates - The Parenting Research Centre is providing training in two evidence-based parent education programs for professionals who support people learning difficulties and intellectual disability. Click here for more information.

P.E.I. woman 'free like a bird' after living in hospital for almost 2 years

Laura Meader, CBC News, 5 July 2016

'Now since she got out, she's a different person altogether'

A P.E.I. (Prince Edward Island) woman with an intellectual disability is living in the community after advocates worked to get her out of hospital when officials wanted to place her in a nursing home ...

Giving a name to a disability

Top Secrets, 5 July 2016
Offensive now but once quite acceptable, these terms figured in the research for a lengthy article I wrote in 2014 about 32 men who spent decades eviscerating turkeys in a meat-processing plant in Iowa — all for $65 a month, along with food and lodging in an ancient former schoolhouse on a hill ...

Tougher eligibility rules force thousands off the disability pension and into financial hardship
Breakfast, Radio National, 14 July 2016 (Audio file)

The Federal Government's welfare-to-work reforms are pushing thousands of people off the disability pension and into financial hardship. Welfare rights organisations say their work is increasingly taken up with these cases ...

The MIT Lab That’s Quietly Pioneering Fashion For Everyone
Meg Miller, Co.Design, 15 August 2016
For Aimee Mury, finding clothing that works for her 11-year-old daughter Eliza is a challenge, and not just in the ways typical to buying clothes for a pre-adolescent girl. Eliza is autistic, with a low sensory threshold for tactile input; things like seams, loose threads, and scratchy tags are endlessly irritating to her. And while clothing lines specifically for autistic kids have cropped up in recent years, they don't address Mury's biggest challenge with Eliza's clothes: She literally tears through them ...

Conference program released

The program has been released for the two day conference Challenge, Change, Create to be hosted by NSW Council for Intellectual Disability, 14 - 15 September in Sydney.

Topics to be addressed include:

• supported decision making

• children

• the NDIS

• planning

• justice

• creating change

• health

• the ADHC transfer

• death and dying

• inclusion

• jobs

Registration is open

Arts - news and reviews

RUCKUS tames Time
Keith Gallasch, Real Time, #133, June-July 2016
... Set against a background of the turbulent rush of history and juxtaposed with a sinuous time-defying Cambodian dancer, Speed of Life’s transition from fraught labour to artistic freedom and philosophical reflection was magical ...

Film Review: 'My Feral Heart' (UK)
Dennis Harvey, Variety, 1 June 2016
... very pleasing and credible tale of a man with Down Syndrome suddenly forced into a group care facility when his elderly mother dies ... Luke (Steven Brandon) is a sunny bloke roughly in his thirties who lives with his widowed mother (Eileen Pollock). Though she’s sometimes impatient and snappish, they have a good relationship, and at this point he’s gone from being cared for to being her sole caregiver, basically running the household by himself. Yet when she passes away in her sleep one night, the authorities ignore all evidence that Luke can (and does) live independently, claiming there’s no option but for him to move into a state-funded “home” some distance from his lifelong one ...

Trailer (via IMDB)



Actors with Down Syndrome take spotlight at Chicago Shakespeare Theater

Vicki Ortiz Healy Chicago Tribune, 27 May 2016

Even their parents had serious doubts: How could a group of theater students with Down syndrome perform a play by Shakespeare — with its conflicted characters, surprising plot twists and quick-paced soliloquies?

But Katie Yohe, 31, a professionally trained actress who studied at the Globe Theatre in London and now directs a troupe of high school-age actors with Down syndrome, had seen it done. And she knew that with enthusiastic teachers, a supportive theater staff and energizing music, young people with Down syndrome could bring audiences to tears by performing the playwright's masterpieces. So she developed a script, scheduled auditions and alerted parents that her acting group would tackle Shakespeare classics. One mother pulled her daughter out of the troupe immediately ...

Restless at 25
Alan Brissenden, Adelaide Review,15 June 2016
A sigh of relief went through Restless Dance Theatre with the news that the company’s application for an Australia Council grant had been successful when so many others had lost out. The assurance of $1.2m over four years means plans for new works, invited choreographers and touring can now go ahead ...
Down Under review: bold parody strips down Cronulla riots to caricature
Sandra Hall, Sun-Herald, 14 August 2016
Don't expect any illuminating forensic insights to emerge from Abe Forsythe's film about the aftermath of the Cronulla riots. ... All up, it's a brave, boisterous attempt at capturing the mindlessness that powers mob fury ...

• Chris Bunton has a role in this movie (released 11 August 2016), and appears in the trailer accompanying the review - he has some good lines.

Weekend reading and viewing: 13 - 14 August 2016

How and Whether It Is Possible to Integrate Without Exclusion?

Rhys Wyn Evans Huffington Post UK (blog), 25 July 2016
... The Girl is very sociable and is liked by quite a few mainstream children. But she is intellectually and physically slower than these mainstream peers. Despite this, she is very aware of what goes on that doesn’t include her.

In recent years, we’ve found that where parents tell their kids that, for this party, they should choose to invite, say, six or eight friends, it is unlikely that - and unusual for - the kids to pick the little girl with DS. (There is little or no ‘side’ behind that statement. It’s simply a factual observation.) Not, I hope, because they are prejudiced against DS but because they have MORE in common with, say, eight mainstream peers ...

Social Sensitivity
Dennis McGuire, UPS for Down Syndrome (Newsletter), April 2014
... Having good social skills and social sensitivity serves people with Down syndrome in many positive ways in their lives. This may help them to make and maintain positive relationships in all key areas: with family at home, with friends in social and recreation settings, with students and teachers in school and educational settings, and with bosses and fellow employees in vocational settings. Although social skills may be a great strength in persons with DS, there can be a major down side to this social sensitivity. We have found that people with DS may be too sensitive to negative feelings and emotions ...

• This article is reprinted, with permission in the current issue of Voice (July 2016) - the journal of Down Syndrome Australia.

Dear The Camp Director Who Insulted My Disabled Brother

The Odyssey Online, 9 August 2016
... you said that the camp "isn't equipped for kids like that." Kids like what? Kids that have Down Syndrome? As I recall, the previous director was more than accepting and willing to work with "kids like that". The school district pays for "kids like that" to attend the community camp so "kids like that" can remain with their peers and aren't excluded. This camp focused on inclusion not just integration ...

The Gl-are And More

Dave Hingsburger, Of Battered Aspect, 7 August 2016

... He needs strategies to deal with that difference. Parents of kids with Down Syndrome and other disabilities are often told to pay no attention to the disability, 'to us he's just a child' ... well that's not who he is to the world. He needs strategies to cope and strategies to protect and strategies to confront and strategies to engage ... with a world that will see his difference first. Let's state it clearly, it's hard to live a "person first" lifestyle in a world that has a "difference first" value system ...

Census Fail Makes Disabled Australians Grin A Bit

Samantha Connor, The Stringer, 10 August 2016

... Whilst social media explodes in Census website-crash outrage, problems with the new government run NDIS portal has halted millions in payments to service providers. It’s been months now, but it’s caused barely a ripple in the media. Social Services minister Christian Porter has announced that there will be a ‘review’.

The portal that we’re talking about collects information that is far more sensitive than that collected by the Census. It’s not just our names and addresses we are talking about – imagine uploading your whole life plan, bank account details, intimate and personal details of your goals, dreams, sexuality, plans for the future ...

Ms. Harrari, is it you that gets to define quality of life?

Tessa Prebble, One in a Million Baby, 8 August 2016

... Maybe (the journalist) Harrari actually wanted to draw attention to the lack of supports and funding for special needs adults in their families. Maybe she wanted to highlight a vulnerable group in society that needs more attention and care? Maybe she wanted to make a real change.

Maybe. But in doing so she reinforced so many dangerous negative stereotypes and assumptions made by those who have no connection to the special needs world. Her article positively dripped with ableist rhetoric ...

• Parenting an intellectually disabled child: life forever on duty, Fiona Harari, Good Weekend, 6 August 2016

Scrapheap Adventure Ride 7: 30 September - 2 October

Scrapheap is back for it's roughest toughest year yet!

The Scrapheap Adventure Ride is back for it's seventh great journey through the Aussie outback.

To the many people who supported scrapheap in the past we wanted to say a huge 

Thank You!

We would love your support again this year.

Help us reach our target of $100,000, to enable people with 

Down Syndrome reach their full potential.

  Sponsor a Scrapper  

Make a Donation

This year that destination is Kallara Station, Tilpa, in western New South Wales, where all ‘Scrappers’ plus family, friends and supporters will meet for a weekend of fun and entertainment at a campsite from 30 September 30 to 2 October .

That's over 900km from Sydney!

We have 60 riders registered and have raised of $15,000 so far! The aim is to raise $100,000!

Over the past 6 years Scrapheap has raised over $400,000 for 

Down Syndrome NSW which has had a huge impact on people 

with Down syndrome and their families.

Sagamihara: Who? Why?

Reverberations from the deadly attack on people with disabilities at Sagamihara in Japan more than three weeks ago are still raising new questions and perspectives on this horrific event (links to earlier discussions are posted here and here), as the international disability community takes it in:

Remembering the Sagamihara 19

David Perry, Pacific Standard, 9 August 2016
It was the deadliest massacre of disabled people since World War II. How do we honor the victims if we don’t even know their names?

Disability Hate Crime & The Sagamihara Victims

Michael Peckitt, Accessible Japan, 9 August, 2016

... One reason for the lack of discussion of the Sagamihara killings as a disability hate crime, is that whilst on April 1st 2016, the Law to Eliminate Discrimination against People with Disabilities became law here in Japan, and does effectively ban discrimination against people with disabilities, one cannot since April 1st, for example, erect signs that say ‘no disabled’ (and yes I have seen such signs as a resident in Japan), Japan has no national hate crime legislation that deals specifically with disability hate crime ...

Is Peter Singer dog-whistling perpetrators of disability hate-crime?

Naomi Chainey, SBS, 9 August 2016

Where is the line between euthanasia and eugenics?

... do Singer’s philosophies really serve to rally disability hate crime perpetrators? Was the association unfair? Some denizens of twitter seemed to think it hyperbole, as did Singer, insisting he was not at all sympathetic with Satoshi Uematsu - the 26 year-old mass murderer. “It is the parents and doctors making a decision in consultation,” Singer said, in regard to his idea that infanticide is justifiable in certain circumstances. “It is not some crazy guy going into a unit and killing people" ...

Added 12/08/2016:
Disability: no room for pity
Living While Disabled, 4 August 2016
How the Japan massacre relates to infanticide, abortion, and assisted suicide (and why the world’s been silent about it) ...

... There was no great outpouring of emotion for the 19 people dead and the 26 people wounded. When the attack on Pulse in Orlando happened, targeted at LGBT people, the response came from people outside the community as well as inside it, but after Sagamihara, the vast majority of the response has been from disabled people. This is probably a combination of racism (the victims being BME) and disablism* – the victims were disabled people living in a residential community ...

Resources

21 Welcomes
New from Canadian Down Syndrome Society
21 stories for new families, from CDDS members, with an introduction by Paul Sawka, CDDS Awareness Leader. Free to download.

Patient Handouts
Down Syndrome Program, Massachusetts General Hospital

Download information on a variety of health topics, including a new series on introducing new food textures, under the 'Feeding Resources' heading. Free to download.

Living Locally: Understanding Community Supervision
Dave Hingsburger, Service, Support and Success, Vol 5, #8, August 2016

When is washing the dishes, not just washing the dishes? When is taking out the garbage, not just taking out the garbage? When is a friendly greeting, not just a friendly greeting?

These routine tasks, important as they are, can become overlooked in terms of their role in your support of someone with an intellectual disability. We work in the community living movement; this is a civil liberties movement which has a set of ideas. One of those ideals is that people with disabilities have a right to a valued place in the communities in which they live ...

Free to download.

• Link to back issues of Service, Support and Success on the Vita Living Services website, here.

New children's book - Prince Noah and the School Pirates
Silke Schnee, Illustrated by Heike Sistig

It’s time for young Prince Noah to go to school. The prince, who starred in the book The Prince Who Was Just Himself, may be a little slower than other students, but he has no less joy in learning. In his kingdom, children go to school on sailing ships. There is a ship for girls and one for boys. There is a ship for children with an eye patch, a ship for children with one leg, and a ship for children who are slower learners. No one knows why there are so many different ships, but it has always been that way. 

Then a terrible storm drives the ships into the hands of pirates. The boys and girls realize that they will only escape if everyone does what he or she does best. Through their adventures, they learn that diversity makes us strong and that every person has something to teach us.

This delightfully illustrated fairy tale instills appreciation for children with Down syndrome and other developmental challenges, making it a valuable aid for teaching tolerance in the home or classroom. (Publisher's note)

Program details for 'Quality Living for individuals and Families' seminar, 23 August, Sydney

• Register now
• Program (download flyer)

News and commentary on the NDIS (52)

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.

New NDIS portal launched -  and problems are experienced

In response to difficulties experienced with the re-launch of the NDIS portal (access to the website for payments and information), reassurances have been issued from the NDIA (the body responsible for implementing the NDIS), and a Government review of the functioning of the new portal has been announced:

• NDIA statement, 28 July 2016

• Govt To Review NDIS IT System. Pro Bono News Australia, 6 August 2016 - Minister for Social Services and Disability Services Christian Porter has announced a review of the National Disability Insurance Scheme’s IT system after claims the system has been a “debacle”.

Sabotaging the NDIS

Christina Ryan, Advocacy for Inclusion Blog, 30 June 2016

Until recently Australia Post held the trophy for the most outstanding example of corporate self-sabotage in Australia when it increased its costs while reducing its postal service outcomes. Australians have been turning away in droves, a not surprising response to such a business model.

Now, however, the National Disability Insurance Scheme (NDIS) has made a play for the outstanding self-sabotage trophy by making access to the Scheme so unwieldy that recipients are unable to use it. Particularly those who want to self-manage their NDIS package so that it can be more flexible in meeting their needs ...

When the NDIS becomes a lifeline 
George Taleporos, The Drum, ABC, 3 August 2016
I support the right to assisted dying, but I also worry that people will look at me with my crooked and paralysed body and make that decision for me. The support provided by the NDIS ensures people like me also have the right to live ...

Access NDIS

Heike Fabig, Every Australian Counts, 9 August 2016
... Today the call came, and my children are officially participants in the NDIS, and so it begins. The scheme will need refining and tweaking, but I am optimistic the NDIS will deliver on its promises and cater for my children’s needs, and support their increased inclusion into society.

But now, the rest of the country needs to “get with the program”. Because while we are ready for the NDIS, I don’t think Australia is ready for us. Australian society remains fundamentally inaccessible to my kids ...