Research news and commentary update #9 for 2013

Study looking at the effects of caring on young adults in higher education

Carers Australia, 4th October 2013
A study is being undertaken looking at the effects of caring on young adults aged between 18 and 25 in higher education. Those wishing to participate in this research project can contact Chantelle Day at Griffith University ...

New location for Compose study
Compose is a clinical study assessing the safety and potential efficacy of a product that could enhance cognition in people with Down syndrome. The Compose study continues to enrol participants around Australia, including two Sydney sites, and one in Wollongong.  Click here to check locations and contacts - other locations will be added.

2013-2014 DSRTF research grant awards 

Down Syndrome Research and Treatment Foundation, October 2013
Down Sydnrome Research and Treatment Foundation proudly announces the award of new 2013-2014 Research Grants to fund leading researchers from major research centers around the country to help accelerate the delivery of treatments to improve cognition, including learning, memory and speech for individuals with Down syndrome. Recipients of these awards include researchers at Johns Hopkins University School of Medicine for their work with a network of institutions participating in the Down Syndrome Cognition Project; the University of California, San Diego; the University of Arizona; Stanford University; the VA Palo Alto Health Care System; and an international multidisciplinary research conference to take place in March 2014.

With the funding of its 2013-2014 DSRTF Research Grants, DSRTF has now provided over $9.6 million to advance Down syndrome cognition research ...

New Research Grants from Alzheimer’s Association and Global Down Syndrome Foundation Explore Links Between Alzheimer’s and Down Syndrome

DENVER & CHICAGO (Oct 29, 2013) – The Global Down Syndrome Foundation, the Alzheimer’s Association, and the Linda Crnic Institute for Down Syndrome have awarded $1.2 million in research grants to five scientists for innovative investigations that explore the development of Alzheimer’s disease in individuals with Down syndrome. The goal is to eventually translate the findings into improved treatments for all people with Alzheimer’s ...

Women with ID and medical consultations

Successful Ageing in Intellectual Disability (SAge-ID) Study (Facebook), 17th October 2013
A recent study has highlighted the frustrations that some women with intellectual disability experience when consulting with a doctor. Participants in the study expressed a wish that their doctor would spend more time with them and speak to them instead of to their support worker. The researchers concluded that greater awareness of these factors might improve care for patients with ID. 

J. Wilkinson, D. Dreyfus, D. Bowen, B. Bokhour (2013) Patient and provider views on the use of medical services by women with intellectual disabilities, Journal of Intellectual Disability Research, Volume 57, Issue 11, pages 1058–1067, November 2013

Anger in people with learning disabilities can be controlled by CBT, say researchers

Learning Disability Today, October 2013
Cognitive behavioural therapy (CBT) may be effective in improving anger control in people with learning disabilities, according to a new study. Many people with learning disabilities can find it hard to control their anger which often leads to aggression and serious consequences such as being excluded from mainstream services. But a team of researchers from Swansea University has found that CBT could be effective in controlling anger ...

Reference: Willner P, et al (2013) Group-based cognitive-behavioural anger management for people with mild to moderate intellectual disabilities: cluster randomised controlled trial. British Journal of Psychiatry, Oct; 203: 288-96

Women with disabilities twice as likely to be abused

ABC Radio National (Breakfast), 25th October 2013 (transcipt and audio file)

A shocking new report conducted by the University of New South Wales has revealed that violent experiences faced by disabled women are not only more common, but will last longer and result in more severe injuries ...

Library Thursday: 31st October 2013

Ability Links NSW Newsletter, Issue #1, October 2013

NSW Department of Family and Community Services
Ability Links NSW (ALNSW) is a new way to support people with disability, their families and carers as part of the ongoing reforms of the disability service system in NSW. The NSW Government has committed $28.7 million per year to the ALNSW program. When fully established, ALNSW will comprise a network of 248 Ability Links Coordinators, known as Linkers, across the state, including 27 Aboriginal Linkers ...

Breadmakers (2007)

A film revealing intricate social relationships that operate in a community of workers with intellectual/developmental disabilities making a variety of organic breads for daily delivery to shops in Edinburgh. This short documentary was made by Yasmin Fedda and can be viewed at the Scottish Documentary Institute website.

Touch-Words

Special iApps, for APple iPad, iPhone and iPod Touch

$1.99 (US, Canada, Australia), $1.49 (UK), 1.79 € (Euro)

Touch-Words offers a visual-based approach to help children who are at the first stage of learning to talk and to read. It contains resources from the See and Learn Language and Reading program of activities devised and published by Down Syndrome Education International.

Specifically designed for children who may have difficulty learning to talk and to read, such as those with Down syndrome, and other visual learners.

Cause and effect: touch the picture to see and hear the word.

Includes 28 pictures from See and Learn First Word Pictures, with matching written and spoken words.

Includes text and clearly-spoken words.

How many Australians have Down syndrome?

In support of its call for the establishment of a national register of Australians with Down syndrome, our national peak body, Down Syndrome Australia, has put together the fragmented information that currently exists to provide an evidence based estimate of the number of Australians with Down syndrome.

We believe the population to be over 13,000 and growing.  As there is no national, state or territory register of Australians with Down syndrome (with the exception of the IDEA database in Western Australia) this number cannot be rigorously confirmed. However, Down Syndrome Australia is confident that our collation of what little data is available is accurate. You can read the summary here.

• This post, originally published in 2009, is updated as new information becomes available.  It provides links to relevant statistics and commentary about estimates of birth incidence and population prevalence of Down syndrome in Australia and elsewhere.

Step Up for Down syndrome: Sydney 2013 - the big album

A big album of 226 photos from Step UP! for Down syndrome in Sydney on 13th October has been uploaded to our Facebook page.

This is a very small sample ... check out the rest here - you never know who you will find ...

News and commentary on the NDIS (9): responses to concerns

Following our NDIS update post yesterday, Every Australian Counts (the campaign supporting the implementation of the National Disability Insurance Scheme) has responded to media reports about possible changes to the scheme under the new government. We are posting a link their response here in a separate post for clarity, since yesterday's post covered a number of other topics relevant to the National Disability Insurance Scheme.  This reponse also links to Senator Mitch Fifield's media release on Friday 25th October:

Good management of the NDIS critical

Every Australian Counts, 28th October 2013
Media reports last week said the Federal Government is looking at absorbing the newly established agency administering the National Disability Insurance Scheme into Medibank Private, sparking concerns it was looking to scale back the scheme.

Good management of the NDIS is critical and we expect people with disability and their families, carers and disability organisations who have worked so hard to not only introduce the NDIS but ensure open and accountable governance will demand scrutiny of any proposals to change the way the scheme is administered ...

Added 29th October 2013:
Advocates Dispute NDIS Delivery Plan

ProBono Australia News, 28th October 2013
Advocates for people with disabilities have hit back at Federal Treasurer Joe Hockey’s suggestion that the National Disability Insurance Scheme could be managed by Medibank Private ...

News and commentary on the NDIS (8)

How a forty-year-old proposal became a movement for change
Mike Steketee, Inside Story, 22nd October 2013
Amid the often-protracted policy debates of the Rudd and Gillard years, DisabilityCare is widely seen as Labor’s most popular and effectively managed reform. The story begins during the Whitlam years ... and takes in a highly effective community campaign ...


Every Australian Counts comment, 25th October 2013
Reports today say the Federal Government is looking at absorbing the newly established agency administering the National Disability Insurance Scheme into Medibank Private.

Good management of the NDIS is critical and we expect people with disability and their families, carers and disability organisations will demand scrutiny of any proposals to change the way the NDIS is administered. Hundreds of thousands of campaigners expect the NDIS will be rolled out on time and in line with the recommendations of the Productivity Commission.

We'll keep a close eye on how the roll out and will keep you updated as it progresses.

Read the full article on this here and the response from the opposition here. 

We will deliver NDIS: Abbott government
AAP (via the Herald-Sun), 25th October 2013
The Abbott government insists it has no plans to either privatise or unwind the national disability insurance scheme. But it could allow the National Disability Insurance Agency (NDIA) to contract out some administrative functions to the private and not-for-profit sectors ...

Abbott recommits to disability insurance
AAP (Via News.com), 14th October 2013
Prime Minister Tony Abbott has recommitted the coalition to rolling out the national disability insurance scheme and maintaining individual allowances and benefits for carers ...

NDIS: Stockton Centre set to close 

Ian Kirkwood, Newcastle Herald, 16th October 2013
The Stockton Centre is scheduled to close between 2015 and 2018 under state government policies driven by the National Disability Insurance Scheme (NDIS). Plans for closing the disability group home have come and gone over the years and some families with members at the centre believe they had assurances of lifetime care on the site ...

OPINION: Stockton Centre should close 
Linda Hughes and Catherine Mahony, Newcastle Herald, 22nd October 2013
Linda Hughes and Catherine Mahony represent Community Disability Alliance Hunter, a user-led organisation run by and for people with disability.

Last week, the Newcastle Herald reported the possible closure of the Stockton Centre for people with disabilities. Concerns were raised about this by family members of residents, and unions. What hasn’t been raised are the well-documented detrimental outcomes of institutional care nor the benefits and positive outcomes of closing institutions and enabling people to live in the community with appropriate support. These benefits extend to people with disability, families and the community ...

No state for disabled 
Ian Kirkwood, Newcastle Herald, 20th october 2013
Premier Barry O’Farrell signed two major reforms with the former federal Labor government in the past year – the National Disability Insurance Scheme and the Gonski education reforms.

Both schemes are designed to put more money into their respective systems.

Imagine the outcry if we later found that the Gonski reforms also involved the state government shutting down or privatising the NSW education system? Gonski does nothing of the sort, of course. But when we get to the NDIS, we find that’s exactly what’s happening ...

NDIS: Asset move opens door 

Michelle Harris, Newcastle Herald, 24th October 2013
The state government has begun to pave the way for disability staff, 580 group homes and six residential centres, including Stockton, to be transferred to the private sector by 2018, as part of the National Disability Insurance Scheme. Legislation to enable the transfer of public assets and employees, as part of the roll out of the national scheme across the state from 2016 to 2018, has been introduced to the Parliament’s upper house this week. Under the bill, industrial conditions and pay of public sector workers would continue and entitlements such as sick leave would follow workers transferring to the non-government sector ...

DisabilityCare to be sent to private providers to implement
Anna Patty, Sydney Morning Herald, 28th October 2013
The NSW government plans to transfer all its disability services to the private sector from next year in preparation for the introduction of the national scheme, DisabilityCare, in 2018. Public service workers are concerned the transfer will mean a cut in their pay and conditions. The transfer is expected to include the redevelopment of group homes such as Stockton in Newcastle ...

... Kerry Stubbs, the chief executive officer of Northcott, a not-for-profit agency which has delivered disability services for decades, said: ''We are ready, willing and able to take on government-run services".

Ms Stubbs said the legislation, if passed, would deliver the Productivity Commission's recommended removal of the government as the main service provider, creating greater competition among disability services.

"More competition means more choice and opportunity for people with disabilities,'' she said...

Housing shortfall for young people living in nursing homes
Libby Galloway and Di Winkler, The Conversation, 1st October 2013
The National Disability Insurance Scheme (NDIS) is a once-in-a-lifetime disability reform, but a report released today by theSummer Foundation and PwC shows the scheme alone cannot resolve the issue of young people living in nursing homes. There are currently 6,192 Australians aged under 65 years who live in aged care facilities. This group is effectively excluded from society, and experience deep and persistent disadvantage.

Give disability scheme a chance

Disability Directory, 4th October, 2013
As the mother of a son severely disabled with cerebral palsy from birth until his death aged 21, I know only too well what Nick Cater meant in his recent opinion piece about the perils that bureaucracy – by its nature – poses to the successful implementation of the national disability insurance scheme.

Cater is far from the only person in Australia worried about that, and rightly so. However, his analysis fails to grasp many crucial aspects of DisabilityCare Australia; aspects that in turn explain why so many thousands of disabled Australians, their families and other advocates from numerous walks of life fought so hard – against seemingly insuperable odds for much of the time, let’s not forget – for its introduction ...

Colac carers pleased with rollover process to new disability scheme

Lily Partland, ABC Ballarat, 8th October 2013
Three months after the rollout of the National Disability Insurance Scheme began in four regions of Australia - including Barwon in Victoria - two carers from Colac discuss the process.

Grant paves way for independent life

Lisa Cox, Canberra Times, October 8, 2013

The ACT government has awarded $4.3 million to disabled Canberrans in the first phase of the national disability insurance scheme implementation. More than 800 Canberrans have been promised an enhanced service offer, which is a cash grant to pay for equipment, home modifications, or activities to improve their quality of life. As many as 300 of those receiving money through round one of the grants will be using the cash to access a disability service for the first time.

Information for DisabilityCare Australia applicants - Review of DisabilityCare Australia decisions

Administrative Appeals Tribunal

This page includes information about the AAT's role, how to apply for review and how the AAT will conduct reviews.

Disability Service Orgs Merge
ProBono Australia News, 8th October, 2013
Two major disability service organisations have merged in response to the challenges and reforms brought about by the introduction of the National Disability Insurance Scheme ...

DisabilityCare and the Indigenous Population
National Disability and Carer Alliance 10th October 2013
Implementing the National Disability Insurance Scheme in indigenous communities is a significant challenge for service providers. Not only does the indigenous population have a higher prevalence of disability than the rest of the Australian population, but the population also has poorer access to disability services.

In Transit: dance performance

Weekend reading and viewing: 26th - 27th October 2013

What My Mother Knew The Moment She Met My Daughter

Ellen Stumbo, Huffington Post, 22nd October 2013
My mother always told me it was better to be smart than to be beautiful. "If you are smart, eventually you will afford to be beautiful." ... another baby girl joined our family, except this baby girl was different, she had Down syndrome. How would I be able to break the news to my mother? "It is better to be smart than to be beautiful." I knew what "smart" meant in the context of that statement, and I doubted that my daughter with an extra chromosome would meet those expectations ...

Announcing the Turn: a blog for parents of kids with disabilities

Dave Hingsburger, Rolling Around in My Head, 18th October 2013
... her son, the man I'd met as a fully confident self advocate, had died. She was grief struck. ... Many people, those she has known for most of her life, have said to her that she must be "relieved" and "it's better for him," and "now she doesn't have to worry about him," and that her "burden" has been "set down." She is astonished at what they are saying ...

Why Down Syndrome Doesn't Define My Son
Christie Taylor, Huffington Post TED Weekends, 18th October 2013

... I've seen the genius of communication at work in my life, and its power is amazing. I was introduced to this genius by the lady with the blue folder. I met her when she visited my hospital room the afternoon after my son was born. Earlier that morning, I learned my son had Down Syndrome, and my emotions were still very raw ...

How Are People with Down Syndrome?
Eliana Tardio, Living and Loving with Down Syndrome, 16th October 2013
There is a simple, strange question that we parents of children with Down syndrome don’t get asked as much as we should: How are people with Down syndrome?

This is because usually, people already have an established perception of how they are, how they look, how they behave, the things that they can do and those that they can’t ...

That Mythical, Magical Chromosome

Lisa Morguess, Life as I Know It, 29th July, 2013
There’s a lot of talk lately about the magic of the extra chromosome that results in trisomy-21, or Down syndrome. I don’t think this is a new development by any means, but lately it just seems like a prevalent topic – and I’m not talking about misguided stereotypes held by the general public, I’m talking about parents of kids with Down syndrome ...

I Don't Care 
A behind the scenes look at a short film  after seeing the Shifting Perspectives exhibition. 

Beyond Down Syndrome
The Unknown Contributor, 9th October 2013
It is there in her face for you to see before you even learn her name, or her favorite food. Before you find out that she loves jewelry and shoes and tights and dresses and little hollow plastic balls that double as fake boobs, you already know that she has Down syndrome. The shape of her beautiful blue eyes rats her out.

None the Same as the Other: Ethical Reflections on Eradicating Down Syndrome
Guest blogger, Hans Reinders, Thin Places, 22nd October 2013
... they at least have this one extra chromosome in common, otherwise they would not be identified as people with Down syndrome, but this observation tells us next to nothing about their lives. It does not inform the debate on whether humanity would be better off without DS in any significant way ...

Ethan Saylor Advocacy Update

(US) National Down Syndrome Congress and National Down Syndrome Society, 17th October 2013

The Disability Wars: Australia's unwritten history
Donna McDonald, Ramp Up,  23rd October 2013
... The complete history of Australia has yet to be written: it remains essentially an ableist, Anglo-Saxon history with only occasional flurries - the history wars - to disrupt the dominant narrative. Australian history continues to be a collusion of myth-making when it erases or ignores the lives and experiences of Australians with disability ...

2014 Down Syndrome NSW Calendar now on sale

The Down Syndrome NSW 2014 Calendar is now available for purchase for $16.50.

Download an order form from here, or contact Siena or Michelle at the DS NSW Office on 9841 4411 or email admin@dsansw.org.au

Step UP for Down syndrome: Wagga Wagga 2013

Thanks to Cathy Manning, who organised Step Up for Down syndrome Wagga Wagga 2013, and put up a Facebook page for the event last Sunday at the Botanic Gardens in Wagga Wagga:

Thank you to all of the volunteers, sponsors and families who made it a great day in Wagga Wagga.

Library Thursday: 24th October 2013

• Mental Wellness in Adults with Down Syndrome - a guide to emotional and behavioral strengths and challenges, Dennis McGuire, Ph.D. and Brian Chicoine, M.D, published by Woodbine House in 2006, is now available in Japanese. Enquiries should be directed to the publisher.

• NSW Police Force: NSW Police have worked with Scope to develop Easy English Victims of Crime fact sheets to improve access to justice and victim support services for victims of crime.  Now available on NSW Police Force website. Access the factsheets here.

• Communication Access for All is a new booklet published by Scope (Victoria). Communication Access is when everyone can get their message across. Communication Access is about communicating with people who do not use speech or have speech that is difficult to understand. It makes everyone in the community aware that they can play a role in removing communication barriers. Further information is available here.
• The Mayo Clinic recently released updated guidelines for the evaluation and management of dementia in adults with intellectual disabilities.
• A new (US) National Down Syndrome Society  poster and accompanying lesson plan is designed to raise awareness about Down syndrome and promote inclusion  The 11x17" poster is perfect for any elementary school classroom, community center, religious organization and more! The lesson plan, for grades K-2 and 3-5, reinforces the inclusive message of the poster. 

People with Down syndrome in the news

Canterbury-Bankstown athletes to take part in Special Olympics Asia Pacific Games at Newcastle in December

Adam Vidler, Canterbury-Bankstown Express, 21st October 2013
The green and gold will be proudly worn by six ­Canterbury-Bankstown athletes at the inaugural Special Olympics Asia Pacific Games ... Our honour roll includes bocce player Cameron Chance, of Yagoona, who said he was looking forward to playing in the singles and doubles events at the games.

"I am very, very excited to be able to represent Australia," he said. "How amazing." ...

Mona Vale's Amanda Storey is hoping to strike it lucky at Special Olympics

Kat Adamski, Manly Daily, 23rd October 2013

Thanks to her prowess with a bowling ball, Amanda Storey of Mona Vale will represent Australia at the inaugural Special Olympics Asia Pacific Games in December. Ms Storey, who has Down syndrome, is part of the ten pin bowling team along with Josie McLean, of Collaroy Plateau, and Lisa Vineburg, of Dee Why.

"I've been bowling for about 10 years - and I get strikes a lot," Ms Storey, 28, said."My family is coming to cheer me on when I compete (in the Special Olympics)."


Down’s syndrome doesn’t define these young, Israeli backpackers

Spence Feingold,  The Times of India, 19th October 2013
The meeting between Israeli and Indian youngsters at India Gate early this week was not your average cross-cultural exchange. Both groups consisted primarily of individuals with Down's syndrome ...
The 11 young adults — all in the age group of 20-30 years — were each accompanied by one of their siblings. The group hiked through Corbett National Park, Kasar Devi and Nanda Devi National Park and stayed a few nights in Rishikesh. "We trekked to 4,000m above sea level. The group far surpassed my expectations," said Jaman Singh Rawat, a guide who led the excursion.

"At first I was very nervous and wasn't sure how the group would manage on such an intense trek. In the end it was so amazing," stated Inbal Rotman, who accompanied her younger brother who has Down's syndrome. "Although it was a hard climb, the view from top was definitely the best part of my trip," said her brother, Ilan Bar ...


Woman with Down's syndrome to be paid compensation for illegal detention

Owen Bowcott The Guardian, 22nd October 2013
The  (UK) government has been ordered by the European court of human rights to pay compensation to a severely disabled patient with Down's syndrome for detaining her illegally.


Glee’s Lauren Potter Hits the Red Carpet 

Beth Douglass, Wet Paint, 21st October 2013
We haven’t seen Lauren Potter (aka Glee’s sassiest and most adorable cheerleader, Becky) since last season, but fans of the sweet Cheerio can rest assured: She will be back soon! ...

'Inclusion in education:towards equality for students with disability'

Children with Disability Australia’s latest issues paper was released today, launched by Disability Rights Commissioner, Graeme Innes in Sydney.

Inclusion in Education – towards equality for students with disability is a detailed review of the research literature and looks at the barriers and low expectations faced by students with disability, what inclusion really means in education and the outcomes that can be achieved when it is done well. What does this mean for education reform in Australia?

• Links to the paper are available here on the CDA website.

Australia must do more to educate disabled children
Fran Kelly, ABC Radio National, 23rd October 2013
A new report to be launched today by the National Disability Commissioner calls for Australia to lift its game when it comes to educating children with a disability.Despite he right to an inclusive education being enshrined in the UN Convention on the Rights of Persons with Disabilities, it's still common for students to be denied this right in our country.Today's report calls for a review into educational practices and the culture of segregated schools. Interview with Dr Kathy Cologon, the report's author (audio file).

Guidelines for communicating in emergencies

These guidelines might be useful to some in the current bushfire State of Emergency here in NSW:

Communicating with People with Disability: National Guidelines for Emergency Managers

These guidelines have been designed to support emergency managers to better understand the varied communication needs of people with disability. They are intended to inform and complement the wide range of policies and procedures developed at all levels of government, business and the not-for-profit sector in support of incident management and the delivery of emergency warnings.

• The guidelines, including a 'quick' version can be downloaded in  a variety of formats from the Australian Emergency Management website, here.

Exercise and overheating: warning signs in people with Down syndrome

Timely advice with the arrival of what is shaping up to be a long hot summer:

Warning Signs a Person with Down syndrome is Getting Overheated

Brian Chicoine, MD, Advocate Medical Group Adult Down Syndrome Center, 21st October 2013
Exercise is important for people with Down syndrome just as it is for all people. For all people, care must be taken to avoid overdoing it with exercise. Excessive sweating can be a sign to ease back, get a good drink of water, and cool down.

However, some people with Down syndrome don’t sweat much and can get overheated more easily. It is important to watch for signs of overdoing exercise or overheating ... read the whole article here.

Occupational Therapy Awareness Week

• Occupational Therapy Australia provides a searchable directory for OTs working in a range of fields via its website.

Down syndrome awareness ... what is it, why do we need it, is it enough?

October is Down Syndrome Awareness month in North AMerica, and here in Australia we have formally claimed the third week of October as Down Syndrome Awareness Week for about 20 years.

Raising 'awareness' about Down syndrome has been a high priority for Down syndrome support groups around the world since their emergence in the earlier 70s, with well developed campaigns developing particularly over the last two decades. Achieving a balance between presenting positive, hopeful messages to both families and the broader community while advocating for the very real support needed by people with Down syndrome as individuals has sometimes raised robust discussion, even within the Down syndrome community.

More recently a push 'beyond awareness' has been noticeable, particularly from individuals (often parents, who have always been at the leading edge of social  and cultural change affecting our sons and daughters) capitalising on the wide and easy reach of social media. Some commentators make a case for more rapid and radical evolution than others, some voices are more strident than others. The call is broadly for awareness to give way to more proactive acceptance, advocacy and frank activism for and by people with Down syndrome.

Is this the natural evolution of the concept of 'awareness', or is it a response to external drivers  such as new, less-invasive prenatal testing (expected to markedly reduce the population of people with Down syndrome), or to recent research that has stimulated discussion about whether Down syndrome needs to be cured, is it part of general social change around access to information, rights and 'ableism' in disability circles ... or all or none of these?

These links are just a sample of the direction of current discussion about awareness and beyond:

Down Syndrome Awareness Month: Why It Should Matter to Everyone

Sipping Lemonade, 1st October 2013
Knowing something exists is far different from having a true understanding. It’s like seeing pictures of the Eiffel Tower vs. taking pictures from the top. Like watching a romantic comedy vs. falling in love. Like walking into a Babies R’ Us vs. holding a sleeping newborn ...

Awareness, Acceptance, Advocacy, Action

Big Blueberry Eyes, 20th March 2013
... Where do we go after raising awareness? I have been raising awareness on my blog for 7 years now, and on FB for about 4 or 5 years. In raising awareness I feel like I'm preaching to the choir. The majority of the awareness seems to happen within the Down syndrome community ..

What’s the point of Down syndrome awareness?
Mark Leach, Down Syndrome Prenatal Testing, 8th October 2013
October is (US) National Down Syndrome Awareness Month. But, what’s the point of raising awareness about Down syndrome? ... we have Down Syndrome Awareness Month because not only have people with Down syndrome not been included in the telling of our shared experience, for most of our history they have been purposefully excluded, segregated, and hidden from society. This exclusion nurtured ignorance about Down syndrome, and ignorance begets fear. The awareness is needed to enlighten and eliminate this fear ...

Down Syndrome: Awareness to Acceptance
Jisun Lee, Kimchi Latkes, 10th October 2013
What is “awareness”? How can awareness be helpful? Can it be harmful? Where can it lead? October is National Down Syndrome Awareness Month. As I’ve watched and participated in various awareness efforts, I wrestle with the concept and all it entails.

Will an awareness month for my child’s genetic condition help create what I really want—a place at the table of a fully inclusive society? Can the “awareness” alone possibly give rise to the monumental shift that our society needs?

Exposing quotes that reinforce Down’s syndrome myths: The Truth

Hayley Goleniowska, Special Needs Jungle, 9th October 2013
Posters and leaflets dispelling common myths and setting out facts about Down’s syndrome are often created wonderfully by charities to distribute to new families. So rather than reinventing the wheel, I thought I’d highlight a few quotes that have been said to me over the years, think about the subtext behind them and use them as a springboard for explanation of the realities ...

Keeping it Real

Down Wit Dat, 15th October 2013
I'm not so keen on the "awareness" any more; the colours, the gew-gaws, the posters. Instead I'm all about the education or the advocacy part. Even the activism part. One could argue that I always was more of an advocate than awareness raiser given the topics of most of my posts in Octobers past... I may partially agree with you too. However, as I've stated before, I'm done with awareness. Instead, I'm going to advocate. Hard.

National Disability Services: Zero Tolerance Project

Zero Tolerance, National Disability Services' project supporting service providers’ efforts to prevent and respond to abuse and neglect of people with disability, is under way. The project will develop a practical framework, including tools and resources for service providers, and best-practice approaches to early intervention and remediation of abuse and neglect.

Work is being supported by all NDS state and territory offices and by a project reference group, formed after expressions of interest were received. The group brings together professionals from across Australia with current expertise in the field of abuse and neglect, as well as professionals interested in improving service cultures and responses to abuse.

Despite this there is evidence that people with disability continue to be at greater risk of abuse and neglect than people without disability. Concern about these risks has been reflected in a number of recent high profile cases of abuse and through the stories of people related to the Royal Commission into Institutional Responses to Child Sexual Abuse.

The introduction of the NDIS presents new opportunities but also new challenges. There is likely to be an increase in delivery of services in home and community environments where regulation may be more challenging to implement. New risks related to use of new technologies and reliance on the internet may also emerge.

More information, including consultation event dates and locations is at the Zero Tolerance Project page.

Weekend reading and viewing: 19th - 20th October 2013

Growing Up With a Disabled Sibling

Rachel Adams, Motherlode, New York Times, 10th October 2013
“Mom, when are you going to write a book about me?” my 7-year-old son, Noah, asked as we sat on the floor of his room, surrounded by packing materials from the box that had arrived earlier that day. Inside were copies of my new book, each with a picture of me holding Noah’s brother, Henry, on the cover. Henry has Down syndrome, and the book is about the first three years of his life ...

Behind the Scenes - I'm a Champion
A short look behind the scenes of filming a campaign to support the Special Olympics Asia Pacific Games in December this year. The film crew included film making students with intellectual disabilities. The finished videos are here.

How to respond to the r-word

Maureen Wallace, Chasing Charlie, 9th October 2013

... What would you do? Some organizations that advocate for people with disabilities share tips and even practice scenarios. Here are some of my favorites ... (Brian Skotko) shared advice that immediately depressurized my social spine, or my inclination to feel the need to speak up every time I hear the R-word.

That's not my name - an anti hate-crime anthem
Paul, Stay Up Late, 23rd September 2013

... we were concerned how words around disability were used in the media and so we thought we’d have a go at writing a song ... The words ‘hate crime’ weren’t holding a meaning for the people with learning disabilities that we were talking to, and that obviously presents a real problem. How can you report a crime if you don’t know it’s being committed? ... we talked about how, among other things, it’s about the abusive names people get called ... And here’s the result – our anthem against disability hate crime, and we’re happy for this to be shared far and wide to help spread the message.

Confessions of a special needs parent: the hard things
Ellen Stumbo, finding beauty in brokenness, 6th June 2013
Parenting a child with special needs can be a challenge, and often those challenges feel like a strong tidal wave coming at us, threatening to make us lose our balance, to fall, to give up. But we don’t. We never do ...

21 Things People Don’t Get About Kids With Down Syndrome
Ellen Seidman, Babble, 14th October 2013
In honor of Down Syndrome Awareness Month, I decided to ask parents of kids with Down syndrome about the stuff people just don’t get about their kids. There are so many misconceptions, misunderstandings and flat-out mistakes about children with DS, and just what having three copies of the 21st chromosome means. Things can be especially challenging when kids are little-little and in that stage where parents are constantly comparing milestones ... (Click on the photos at the end of the page to read the following 20 responses)

A Break from the Norm
Jessica-isms, 14th May 2013
... For the past decade I have been under the impression that there is such thing as a “perfect” special needs child. You know that perfectly cute, exceedingly happy child that lights up the room when they enter – the “poster child” for their disability? My child most certainly is NOT that child ...

Recess for your Child with Special Needs: 7 Challenges and Solutions
Karen Wang, Friendship Circle, 17th October 2013
Recess has major benefits for children’s well-being and ability to learn. ... But sometimes recess is the most anxiety-provoking part of the school day: 15 to 30 minutes of unstructured play surrounded by noisy kids.

TV Characters With Disabilities On The Rise
Shaun Heasley, Disability Scoop, 14th October 2013
Twice as many characters with disabilities will appear on broadcast television this year as compared to last, a new report finds, though they still account for just 1 percent of those depicted.

Disability - a fate worse than death?
Stella Young,  Ramp Up, 18th October 2013
Relieved at the defeat of the Voluntary Assisted Dying Bill yesterday, ABC Ramp Up Editor Stella Young remains opposed to legalising assisted death in any form. Here she explains why.

Step Up for Down syndrome Sydney: photo post #3

A massive 'Thank You' to Down Syndrome NSW and Priscilla
for another well organised 'Step Up For Down syndrome'
Team Bellarina had a wonderful day, and we're already looking forward to next year

Feedback from first phase of Disability Services Act review

From NSW Ageing, Disability and Home Care:

The Disability Services Act 1993 (the Act) is being reviewed. A total of 600 people attended 25 public consultation session and 64 written submissions were received. The Feedback summary paper on the reform of NSW disability laws (PDF) is now available on the ADHC website.

Some recurring ideas that were raised include:

• that laws should better define disability and support with a focus on needs and not what a person’s disability is
• people should be able to choose where they receive services
• that laws should work towards building a community that includes everyone.- 

See more here. 

Library Thursday: 17th October 2013

• Reading Our Way

Following on from the successful workshops recently held in Sydney and Newcastle, the Down Syndrome NSW library has a copy of Reading Our Way, published by the Down Syndrome Association of Queensland. These items are not for loan but are available for patrons to access in the library.

• Toilet training for children with special needs, by Continence Foundation of Australia, Victorian Branch

This app has been developed from the One Step at a Time series for teaching toileting skills to children with special needs. The booklet is available in PDF and other tip sheets here. 

• Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, by Brian Skotko and Susan P. Levine is now available in a Kindle edition.  It is 'is the first book written exclusively for teens with a brother or sister with Down syndrome.'
  
  
• An excerpt from A Room of Golden Shells: 100 Works by Artists and Writers with Down Syndrome, published by Woodbine House on World Down Syndrome Day this year, is available for viewing here, in honour of the US Down Syndrome Awareness Month.
  

• UK resources on the dual diagnosis of Autism Spectrum Disorder and Down's syndrome

Earlier this month, the Down's Syndrome Association in London held a meeting to provide information and support for parents and carers of children with a dual diagnosis of Autism Spectrum Disorder and Down's syndrome. The day was divided between a presentation from developmental psychologist Gill Bird and a general discussion, where parents talked about how their lives and ways of coping and suggested ways the DSA could support parents better.

Resources now available from the meeting include the DS/ASD Day Summary, and the presentation from the day - visit the DSA website for links. Further such meetings are planned.

• 2013 Speech Pathology Australia Book of the Year Awards announced

Each year, Speech Pathology Australia awards three Australian authors the “Best Book for Language Development” in the categories – Young Children, Lower Primary and Upper Primary. 

Each award is based on the book’s appeal to children, interactive quality and ability to assist speech pathologists and parents in communication and literacy development. 

Visit the Speech Pathology Australia website for more information about this year's winners.

• Contact the Down Syndrome NSW library at library@dsansw.org.au

Step Up for Down syndrome Sydney: photo post #2

Thanks to Josh, Krystle and Isla Coburn (3 1/2) for these fabulous photos from Step Up for Down syndrome in Sydney last Sunday.  This event really makes the most of its spectacular venue, especially when the weather sparkles as it did this year.

... more later.

2013 NSW Carer of the Year: Anne Naylor

NSW Minister for Ageing and Disability Services, John Ajaka, acknowledged 10 carers aged between 16 and 79 for their dedication and commitment to their family and friends at an awards ceremony at Parliament House on Monday (14th October).

Mr Ajaka said the awards also recognise two outstanding carer support groups that have made an exceptional contribution to caring.

“The NSW Carers Awards provide us with an opportunity to pay tribute to the work of carers and raise awareness about the important role they play in our community,” Mr Ajaka said.

“There are 850,000 carers in New South Wales – one in ten people are looking after a family member or a friend who has disability, a mental illness, a chronic health condition or are frail aged.”

Access Economics estimates that nationally, carers provide 1.32 billion hours of care each year saving the Australian taxpayer $40 billion annually.

2013 Carer of the Year: Anne Naylor
Anne Naylor has four adult children, three of whom need care. 

Her eldest son has Down Syndrome, autism, dyspraxia, mild hearing loss and sleep apnoea. Anne provides all of his personal daily care and advocates on his behalf as he moves into adulthood. 

Another child has bipolar disorder and two have attention deficit hyperactivity disorder, and Anne provides them with practical and emotional support as they navigate through life.

Anne educates others about caring for children with disability. She is a carer representative with Carers NSW and she has spoken on radio and written newspaper articles about her caring experience. Anne has bipolar and has recently published a book, Art From Adversity: A Life With Bipolar, which describes her experience of living with a mental illness while caring for children with disability. 

Anne also draws on her personal experiences to deliver an annual lecture to medical students, at the University of Sydney, about a parent’s response to the birth of a child with disability.

Anne has completed a Masters in Special Education and is an accredited interpreter.

• Radio 2GB interview with Anne Naylor 15/10/2013

Among the ten carers on the Highly Commended list for the awards, was Anne Burgess from Yass who was born with her own disability, is devoted to caring for her 55-year-old sister who has Down Syndrome and is partially blind. Anne was also primary carer for her late father who sadly passed away a couple of months ago aged 97 and her mother who had cancer. 

Our congratulations to Anne Naylor and all of those recognised in the awards.

See more at about the 2013 NSW Carers Awards on the Ageing, Disability and Home Care website

Step Up for Down syndrome - a Sydney family tradition

Don and Alison Mason and their boys are long term supporters of our community awareness walks, and have brought along a growing family contingent over the years.  When Jack, who has Down syndrome, was little, Don carried him across the Sydney Harbour Bridge on his shoulders ... and he did it again on Sunday for our first Step Up for Down syndrome event, on a very warm spring day.

Jack knows he's on a good thing!

The family has grown with Connor's arrival ... 

... so big brother Ben has taken on shoulder carrying duties too!

The extended family contingent

Ben, Don and Jack must have one of the biggest collections of these event T-shirts!

It looks as though things were a little cooler in Launceston (Tasmania) on Sunday for the local Step Up for Down syndrome event at Royal Park. The Launceston Examiner published a gallery of 21 photos by Paul Scambler from the event today - long sleeves and jackets are in evidence, along with happy faces and enthusiasm (and shoulder riding) as the walkers step out.