'Understanding a Down Syndrome Diagnosis' now released as a web app

An excellent resource, in a new, accessible format, from a highly credible source:

From Lettercase, publishers of good quality information for new and expectant parents:

Since 2008, Understanding a Down Syndrome Diagnosis has been the most valuable resource for women receiving a prenatal diagnosis. Today we introduce this life-changing resource as a free web app, available at http://UnderstandingDownSyndrome.org.  

And continuing our goal to reach even further, to support even more parents, we have made the app available in eight languages: Chinese (Simplified), English, Japanese, Korean, Russian, Somali, Spanish and Vietnamese. 

Please join us in making sure all expectant parents get the resources and support they need. Feel free to share the link to these life-changing resources via social medial, email and organization websites. #sharelettercase

Please consider taking up the invitation to share widely - if you have a son or daughter with Down syndrome of any age, you will be asked to help others find information and resources from time to time. If you use Facebook, you can 'share' the Lettercase post from today (it will be dated 7 July 2016) to save it on your own timeline where you might find it more easily. A number of 'share' options are provided in the bottom right corner of the web page.

All options (print and online) are listed here.

Resources on health

Supporting people with Dual Diagnosis – Intellectual Disability, Mental Health and Rights-based Approaches

This e-book will help you understand the vulnerability to psychological stress and development of mental health concerns in persons with intellectual disabilities. The e-book is online and free to access. Published by New Brunswick Association for Community Living (Canada).

Introduces definitions and historical context related to intellectual disability, mental health, advocacy and human rights. It is important for those working with individuals with ID to understand this population’s vulnerability to psychological stress and the development of mental health concerns. This module is designed to provide foundational information and knowledge regarding dual diagnosis, as well as person-centered approaches to service and care.

Thanks to Queensland Centre Intellectual Disability for the recommendation.

The health check: What is it and what do staff need to know?
Yona Lunsky, Dara Abells, Ian Casson, Laurie Green, Bill Sullivan, Service, Support and Success, Vol 5 Issue 7, July 2016

This newsletter is just what the doctor ordered (four doctors actually, and a psychologist). This is a no-nonsense discussion on the importance of the health check and how you as staff can make a difference with the individuals that you support ...

• Back issues of Service, Support and Success
• 
  

Patient resources
A range of information handouts for patients is available online from the Down Syndrome Program at Massachusetts General Hospital in Boston.

News and commentary on the NDIS (50)

As the National Disability Insurance Scheme rolls out nationally from this week, there is a great deal of information coming from the scheme, and from external sources:

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 - news

Launch of new participant portal
The new NDIS Participant Portal opened on 1 July -  it is called myplace. You will need to log in as usual on this link. Some of the processes have changed. Here is a link to a step-by-step guide to the new participant portal.

Launch of CID Connect
NSW CID e-news, June 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 amazing source of knowledge. Click here to check it out and participate!

Understanding the NDIS: will parents of newly diagnosed children with disability be left in the dark?Alison M Marchbank, The Conversation, 7 July 2016
The National Disability Insurance Scheme (NDIS) emphasises a commitment to social justice that values a person’s right to choose and purchase the service they want to support their everyday living.

Can co-ops help deliver Australia’s National Disability Insurance Scheme? 
Rebecca Harvey, Co-operative News, 5 July 2016
One of the first accessible display homes for people with a disability will be built at Armstrong in Mount Duneed ...

Understanding the NDIS: a history of disability welfare from ‘deserving poor’ to consumers in control
Paul Ramcharan, The Conversation, 5 July 2016
The National Disability Insurance Scheme (NDIS) is the only national scheme of its kind in the world. Its introduction has been likened to a generational shift with some saying the scheme’s impact will be similar to that of Medicare ...

NDIS stimulates small business with radical new approach
Bhakthi Puvanenthiran, Sydney Morning Herald, 23 June 2016
Just as the internet has forever changed shopping, the National Disability Insurance Scheme (NDIS) has swept into the disability service industry and almost everyone is starting from scratch, giving start-ups and small businesses a hand up ...

Disability funding reform 'disappoints' ethnic communities
Stefan Armbruster, SBS News, 27 June 2016
A radical $22 billion reform of disability services across Australia has largely failed to engage people from non-English speaking backgrounds ...

Holding on to the heart of the NDIS: how the NSW planning process is shaping up

Libby Ellis, InCharge, 22 June 2016

... I have never felt that an NDIS will come as a fully-formed utopia that lands in our laps. Change doesn’t come from the top down. Any great change I have ever witnessed has happened from the grassroots, where people see a reform as an opening and an opportunity for them to grasp and shape as a way to better their own lives ...

A housing problem solved is a pleasure shared
Miki Perkins, The Age, 17 June 2016
... Despite wanting independence for their daughters, their families had little option but to keep them at home. But over the past three years their hometown of Geelong has been a trial site for a seismic shift in disability support: the introduction of the National Disability Insurance Scheme. For the first time, when they drew up their yearly support plan, the three women and their families were asked what "a good life" would look like ...

NDIS rollout in Sydney: not perfect but at least it's here
Rachel Browne, Sydney Morning Herald, 18 June 2016
... "The sooner the support is delivered, the much better the outcomes for the individual but also for society at large," (John della Bosca) said. "One of the strongest arguments in favour of the NDIS is the cost of doing nothing. If we were to continue with the old system there will be higher costs to the health system, the mental health system, juvenile justice and corrective services" ...

Raising Children Network - guide to NDIS

Permanent and significant disability and reasonable and necessary supports
NDIS, 13 June 2016 (video, 4m 38s)

National Disability Insurance Scheme racing to meet demand for disability housing

Norman Hermont, ABC News, 12 June 2016
The National Disability Insurance Scheme (NDIS) faces a huge shortfall in disability housing when it is fully rolled out in 2020 ...

Calling for the NDIS to be more accountable to Aboriginal and Torres Strait Islander people

John Gilroy, Croakey, 29 April 2016
The National Disability Insurance Scheme (NDIS) presents a significant opportunity to revolutionise the quality of care and support to enable Indigenous people with disability to access the supports and services necessary to enable them to work towards full participation in their communities ... However, a lack of accountability from the National Disability Insurance Agency (NDIA), the authority managing the roll-out of the NDIS, in reporting on Indigenous peoples’ satisfaction of the NDIS will impede any developments in establishing a culturally responsive disability service system for Indigenous peoples ...

Betty Hook, 1927 - 2016

We were sorry to hear that Betty (Elizabeth Mary) Hook died on 1 July, at the age of 89.

Betty was a highly regarded and much loved early childhood intervention teacher in the pioneering Macquarie University Down Syndrome Program in the 1970s, and in its community implementation from the early 1980s, principally at the Early Education Clinic at North Sydney

In addition to her then rare qualifications in early childhood intervention, families of children with Down syndrome (and later other disabilities) appreciated Betty's warmth and interest in their whole family. She greeted everyone by name (even if she'd had to check it up as you walked in the gate), and reassured every parent that their child was the most beautiful she had ever seen, that she had been hoping to be appointed as their one-on-one teacher, and that they were doing a superb job of parenting.

Betty was a great supporter of the plan to establish the Down Syndrome Association of NSW through which parents and families would support each other, from its very earliest days. As the mother of eight children and grandmother of many more, she valued what such an organisation would be able to offer.

She maintained her interest the organisation and its members, even after her retirement, and was delighted to be invited to have the debutantes formally presented to her at our 20th Anniversary Debutante Ball in 2000 - she had taught most of them as babies and preschoolers, and remembered them all.

The Board and members of Down Syndrome NSW are very thankful for the work and life of Betty Hook, over so many years, supporting so many people with Down syndrome and their families, and we extend our deepest sympathy to her family in her loss.

Betty's funeral will be held at Northbridge this Friday, 8 July - the funeral notice is here.

Latest additions to 'events' page

• 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 

Murmur Workshops - series 2 for 2016
Murmuration Integrated Performance Company - series of eight weekly workshops open to the community to explore improvised movement, develop dance skills, activate individual creativity and learn theatre exercises. Interested participants will take part in an end of year sharing. All Teaching Artists are experienced and qualified to deliver high quality dance and theatre workshops, for a variety of ages and for people with and without disability. 

19 July - 6 September 2016 - Marrickville

Speech Pathology Week 2016
Speech Pathology Australia - Speech Pathology Week seeks to promote the speech pathology profession and the work done by speech pathologist with the more than 1.1 million Australians who have a communication or swallowing disorder that impacts on their daily life.
The theme for Speech Pathology Week in 2016 is: Speech Pathology – Creating Futures! highlighting the Speech Pathology 2030 project, while reinforcing the important role that speech pathologists play in the lives of Australians with speech and swallowing difficulties.

7 - 13 August 2016

‘Wish you weren’t here’: A review of nature and ethics of the growing trend towards the elimination of persons with disabilities
Centre for Disability Studies - the 2016 Trevor Parmenter Lecture will be given by Professor Tim Stainton. 'With the passage of the CRPD, new innovations in support such as the NDIA and increasing legal and public recognition of people with intellectual disability it would be easy to think we are living in a golden age and progress toward full and valued citizenship is inevitable. While much of the above may be true, there is a dark ‘undertow’ which is pulling ever more strongly in a more sinister direction. '

Monday 29th August 2016 - Sydney

UK Down Syndrome Research Forum 2016

Down Syndrome Education International - regular international event where researchers and practitioners meet to discuss current research, recent findings and implications for practice.Keynote speakers: Dr Chris Lemons (Vanderbilt University) known for his research on reading and educationand Dr Alexandra Perovic (University College London) whose research focuses on language and bilingual issues. Program details available mid-July.

5 and 6 September 2016 - York (UK)

Nepean Disability Expo 2016
16 -17 September 2016 - Penrith

Murmur Workshops - series 2 for 2016
Murmuration - series of eight weekly workshops are open to the community to explore improvised movement, develop dance skills, activate individual creativity and learn theatre exercises. Interested participants will take part in an end of year sharing. All our Teaching Artists are experienced and qualified to deliver high quality dance and theatre workshops, for a variety of ages and for people with and without disability. Guest teacher details.

19 July - 6 September 2016 - Marrickville

Having a Say Conference 2017
The Having A Say Conference has been going sence 2000, it's not like any other conference as it is designed for people with disabilities and their supporters, not for service providers. 

8 - 10 February 2017 - Deakin University Waterfront Campus, Geelong (Vic)

Recent writing on advocacy and inclusion

Advocacy, Inclusion And Diversity: An Evening With Jamie Brewer

Bus Stop Films, 3 June 2016
Excitement buzzed on the night of May 25th, as Bus Stop Films along with AFTRS and Screen NSW prepared for a night of rich discussion surrounding inclusion and diversity both in front of the camera and behind it ...

As someone with learning disabilities, I believe we need a say in the services we useGary Bourlet, The Guardian, 15 June 2016
This week sees the launch of Learning Disability England, a new organisation that aims to strengthen the voice of people with learning disabilities in politics, policy-making and service provision. People with learning disabilities and their families will be directly involved in how the new organisation is run and what it decides to do ...

Greens Commit Funding For Royal Commission Into Disability Abuse
Luke Cooper, Huffington Post, 23 June 2016
The Greens will push for $400m to fund a Royal Commission into the abuse and neglect of people with a disability in institutional and residential settings such as group homes, after an inquiry was told of widespread abuse ...

Disabled people are frustrated at being denied the chance to work Katherine Quarmby, The Guardian, 23 June 2016
Why are so few disabled people employed, compared with non-disabled people? How should governments and employers close the so-called disability employment gap? These are thorny issues ...

Value revealed in disability talent as research shows morale and standards boostAnne Mather, Sunday Tasmanian, 26 June 2016
They are a talent pool offering diversity, loyalty and a boost to productivity. A growing body of research is showing that people with a disability are ideal workers who raise the morale and standards of an entire workplace ...

Deaths in disability care ‘must be tackled’
Sean Parnell, The Australian, 28 June 2016
Pressure is mounting for a ­national surveillance system that might reveal and ultimately reduce the number of avoidable deaths in disability care ...

Confronting the Whitewashing Of Disability: Interview with #DisabilityTooWhite Creator Vilissa Thompson
Sarah Blahovec, Huffington Post, 28 June 2016
A new hashtag campaign has been making waves in the disability community and facilitating dialogue about how we see disability. #DisabilityTooWhite, a hashtag started by disability activist and blogger Vilissa Thompson, has been starting discussions in the disability community regarding the media visibility and representation of disabled people of color ...

Challenge, Change, Create: registration now open

Latest information on the NSW Council on Intellectual Disability 2016 annual conference:

• Preview of speakers
• Click here to download the registration form. 
• Find out more about the conference on the NSW CID blog here.

14-15 September 2016  -  Pyrmont

Accessible transport and people with intellectual disabilities

From NSW CID e-news, June 2016:

NSW Council on Intellectual Disability has been working on a lot of issues related to transport and people with intellectual disability. Almost everyone we speak to tell us about problems they experience when using buses and trains.

NSW CID supports one of our members who is on the Accessible Transport Advisory Committee with Transport for NSW. If you have any transport related issues, we would like to hear from you so that we can raise your issues with Transport for NSW and the Minister. Give is a call on 02 9211 1611 or email us info@nswcid.org.au

You can also read a blog article on transport by one of our board members, Quang Nguyen, here.

2016 Trevor Parmenter Lecture and Awards

The 2016 Trevor Parmenter Lecture will be given by Professor Tim Stainton on the Nature and ethics of the growing trend towards the elimination of persons with disabilities. 

Visit the Centre for Disability Studies  website for more information, and to register for this event. 

Two awards will be presented:

The Lifetime Achievement Award will recognise a lifetime contribution to improving he life of people with disabilities.

The CDS Excellence Award will recognise contributions to research, education and teaching, advocacy, community contribution or clinical practice.

To nominate someone for one of these awards, complete the nomination form and include 2 peer testimonials before 24 July 2016. All applications will be reviewed by the CDS Selection Panel.

If you require any further information , or if you are having difficulties with the online form please contact CDS: cds@cds.org.au

Weekend reading and viewing: 2 - 3 July 2016

A year of love and joy for Jillian and Ryan
Paul Daugherty, 27 June 2016
One year ago today, Jillian Daugherty and Ryan Mavriplis exchanged wedding vows before 160 people at a nature center just outside Cincinnati. I won’t live long enough to see such a triumph again.

It’s unusual for people born with Down syndrome to get married. I’ve never understood why that is. We never thought Jillian wouldn’t get married. It took tons of work. All marriages do. It takes an ongoing effort. All marriages do. It demands love and empathy and patience. What marriage doesn’t? ...

Shaming people who hurt your kid with Down syndrome doesn't help your child

Maureen Wallace, She Knows, 28 June 2016
Being a mama bear is tough, period. But when it comes to advocating for my 6-year-old with Down syndrome, the slightest poke can feel like a searing slice through my heart. I feel so much for the mom who posted an emotional letter online after her child with a disability was the only child not invited to a classmate's birthday party. She lashed out at the other child's parents and her message went viral ...

Down syndrome kids are still made to feel 'undesirable' in Russia

Marc Bennetts, Newsweek, 20 June 2016

... Unlike in Western Europe and the United States, where disabled people are a highly visible part of society, Russian’s 12.5 million citizens with disabilities are a relatively rare sight in public, especially in provincial regions with less developed infrastructure. Nearly 30 percent of Russian children with disabilities such as cerebral palsy, muscular dystrophy and Down syndrome live in state-run orphanages, although most of them have at least one living parent.

“Russia is just beginning on the path towards the integration of people with physical and developmental disabilities into mainstream society,” says Elena Alshanskaya, head of the Volunteers to Help Orphans organization, which seeks to improve the lives of both disabled and able-bodied children abandoned by their parents. “But people are afraid of what they don’t know, of what they don’t see every day.” ...

She’s not my kid with Down syndrome, she’s my kid 

Amy Silverman, BabyCenter Guest Blogger, June 28, 2016
In a lot of ways, Sophie and I grew up together. And as she got older and I morphed from a spoiled, self-centered brat—one who used words like retard and switched lines at Safeway when I saw a bagger with special needs —into the mother of a kid with Down syndrome, I had more questions.

How was Sophie going to fit into the world? Not just my world and our family’s world, but society in general?

This was the big, unanswerable question. I had smaller ones, too. Like, how come it used to be okay to describe a person with Down syndrome as mentally retarded, but suddenly it wasn’t? Did people with Down syndrome ever get depicted in pop culture simply as themselves—or was the story always about how they had a disability? How would school work for Sophie? Would she be able to talk? To read?

How a gluten free cookie startup gave wings to my daughter's dream

Elise Sampson, Reason to Bake, 14 June 2016

... Right from the start, Carolyn would announce that she wanted to be a baker. I must admit I did not give her announcement much attention. But her job coach did listen and began to look for opportunities that would be a good fit for Carolyn. We couldn’t seem to find the right one ...

Artist with Down syndrome written off as ‘incapable’ blooms in the Downtown Eastside

Cheryl Chan, The Province, 29 June 2016
Barely three years ago, Teresa Pocock was written off as “incapable” and banished to an old-age care home to live out the rest of her life in an institutionalized setting.

Today she is a poet and artist with a solo exhibit at Gallery Gachet that runs until Saturday.

“It’s a wonderful testament to her artistic ability,” said sister Franke James. “The artwork is fun and engaging. It expresses her discovery of the Downtown Eastside. It expresses a love of her life.”

It’s a far cry from November 2013 when Pocock, who has Down syndrome, was placed in a nursing home in Toronto against her and her father’s wishes ...

1 July 2016: national roll-out of the National Disability Insurance Scheme begins

Today the NDIS moves from a handful of trial sites to the beginning of full roll out to people with disability across Australia.

Over the next few years an estimated 460,000 people with disability will be receiving the support they need to lead the life they choose. 

It’s a reminder of how far we’ve come in just five years!

Every Australian Counts campaign, 1 July 2016

Today it is a reality - Australia has a National Disability Insurance Scheme! 

What an achievement.

As a country we've made and are now delivering on a commitment to ensuring that all Australians can access the support they need to have a good life.

We of course know that the NDIS is not perfect, there's more work to do but we just wanted to stop to say thank you and well done to all those involved in getting things this far. 

To all the people with disability and their families who stood up and fought for something better - thank you. 

To all the allies, advocates, government, service providers and politicians who have shown leadership on this issue - thank you. 

Together we have shown that change is possible, yes it's a lot of work and it's not always easy - but we can make progress. 

So, let's keep going and make sure that the future is even brighter for people people with intellectual disability!

NSW Council on Intellectual Disability, 1 July 2016 

Disillusioned with politics? Then take heart in July 1
Annabel Crabb, ABC News, 28 June 2016

The very existence of the National Disability Insurance Scheme - to begin national operation this Friday - is a powerful rebuttal to that contemporary whine about big policy reforms being too hard for our short political attention spans ...

My First Plan Explained

Every Australian Counts, 29 June 2016
There’s been a lot of talk in recent weeks about “My First Plan” for people who are becoming NDIS participants when the full roll out starts on 1 July. Many people have questions and concerns so we’ve spoken to the NDIA to get the facts on exactly what it means ...

Catching up with Leigh
Every Australian Counts, 28 June 2016
Leigh Creighton shared his story with Every Australian Counts just as he embarked on his NDIS journey three years ago. With the full NDIS roll out starting this Friday in many part of Australia we caught up with Leigh to see how it’s working out ...

Ordinary Life profile: The Deane Family

NDIS, 22 May 2016 (video 1m 54s)

Kirsten Deane tells what an ordinary life means to her family.

Webinar: NDIS Ready
The NDIS is the new way of providing support for people with disability, their families and carers in Australia. From 1 July 2016, the NDIS will begin to roll out across Australia.

The NDIS will provide about 460,000 Australians under the age of 65 with a permanent and significant disability with the reasonable and necessary supports they need to live an ordinary life. The NDIS also provides information and referrals to existing support services in the community
Over the next three years, the NDIS is being introduced in stages to ensure it is successful and sustainable because it is a big change. Now is the time to get ready.

This webinar, scheduled for 7 July 2016 will focus on explaining the basics of the NDIS, including:

• What is the NDIS?
• When is it coming to me?
• How do I get ready?

More information about the webinar

National Disability Insurance Scheme website


NDIS resources

NSW CID e-news, June 2016

The NDIS has released new resources on the pathway to becoming a participant of the NDIS. Click here to take a look.

The NDIS has also release a number of videos on a range of topics, click on the titles below to view them:

My NDIS Pathway 

Ordinary Life 

NDIS Ready 

Getting ready for the NDIS 

Permanent and significant disability and reasonable and necessary supports 

About the NDISProviders and working with the NDIS

2016 Federal election

Election 2016: Parties respond to ACDA election platform

Australian Cross Disability Alliance, 30 June 2016
The major political parties have responded to the Australian Cross Disability Alliance Election Platform - you can read their full responses on the ACDA website here.

Relevant commitments from the Election campaign
Carers Australia, 30 June 2016
As the Federal Election approaches, we have compiled a list of the relevant pledges made by political parties in regard to areas of policy which affect carers ...

More on health ...

Coincidental to our previous post, this appeared on Facebook today.  Now would be a good time to start following the Adult Down Syndrome Clinic on Facebook,  if you are interested in these questions, posted 29 June 2016:

Expansion of Research and Education Programs at the Adult Down Syndrome Center
What are the critical issues facing people with Down syndrome?

This is an important question for people with Down syndrome, their families, and agencies that serve them, including the Adult Down Syndrome Center.

While there are additional issues and each of us may have a different answer to what is important, our discussions with many individuals, our clinical experience and our review of others’ publications has led us to prioritize these 3 issues and seek ways to address them:

1. Healthy aging and Alzheimer disease
This includes addressing health care issues across the life span to promote good health for its own sake in the younger years but also to set the stage for healthy aging. This also includes determining appropriate health screening for adolescents and adults with DS as well as studying a variety of health conditions.

2. Social skills and daily function optimization
Our initial interest in this topic revolved around the issue of transitioning out of high school and the challenges that has presented for some of our patients. However, it is clear that there may be issues across the lifespan to be addressed.

3. Self-promotion of health
How do we include people with DS in the process of promoting their own health?

Over the next several days (and weeks), we will be posting information as to what some of the questions are that we are addressing and how we are addressing them. In short, we are expanding our research and education efforts. As we progress through this journey, we will be looking to you for input and feedback and will reach out to you as we develop the feedback process.

Health news

CID takes National Action on Health

NSW Council on Intellectual Disability, 30 May 2016
Thank you to the many friends of NSW CID who have supported our campaign for inclusion of people with intellectual disability in the Commonwealth government's mental health initiatives ...
Read about some of success the campaign has had. ...

Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study
K Chitty et al, Australian and New Zealand Journal of Psychiatry, April 2016 vol. 50 no. 4 pp 352-362
... Conclusion: This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to guidelines for prescribing in intellectual disability, the high rate of polypharmacy and its relationship to Developmental Behaviour Checklist for Adults scores reiterate the importance of continued medication review in older people with intellectual disability.

The Abstract is free online, full text requires purchase.

Making Mental Health Policy Inclusive of People with Intellectual Disability 
Department of Developmental Disability Neuropsychiatry School of Psychiatry (3DN), University of NSW
A plain English summary of policy analysis documents from the Improving Mental Health Outcomes for People with an Intellectual Disability project ... The findings (of the project) will develop an evidence base to guide the development of clinical services and policy for people with ID to meet their fundamental right to quality mental health support. One of four key projects of 3DN.

3DN Strategic Plan 2016 - 2021
Foreword by Michael Sullivan, Chairperson of NSW Council for Intellectual Disability:

Reading through this new strategic plan there are two things that really stand out for me. The first is the use of the words “mental health and wellbeing”. This term has been used a lot in recent years about the wider community, but what makes me happy is seeing it used about people with intellectual or developmental disability. It’s the right time to focus on this. People with intellectual or developmental disability are often lost between systems, shunted backwards and forwards, between disability services and services for those with mental illness. Often times it’s our families who pick up the first signs of mental health problems, but for those living in care, there can be lots of changes in staff, and not much chance to become close, so those early signs are often missed ...

Some recent international perspectives on disability

Disability rights around the world: from 1944 to the present day
The Guardian, 22 June 2016
Since the second world war, disability legislation has increased substantially, but there’s still a long way to go ...

Disability-inclusive development isn’t cheap, but exclusion has a higher price  

Polly Meeks, The Guardian, 22 June 2016

At a parliamentary meeting on the case for disability-inclusive development three years ago, one MP playing devil’s advocate said: “Yes, but isn’t this all too costly?”

Mixed Progress at UN on Rights of Persons with Disabilities

Lyndal Rowlands, Inter Press Service, 21 June 2016

Nearly 10 years after UN members adopted a progressive Convention on the Rights of Persons with Disabilities (CRPD), progress implementing the convention has been mixed, even at the UN itself, say disability advocates ...

We need to stop treating people with disabilities as less than human 

Shantha Rau Barriga, The Guardian, 20 June 2016

In the many countries I’ve visited over the past several years while researching conditions for people with disabilities, the one constant – and haunting – refrain I’ve heard from people with disabilities has been: “I am treated as less than human.”

Women representation in world disability forums shrinking

Myra Imran, The News, 27 June 2016

Pakistan’s voice of women with disability and known disability rights activist Abia Akram on Sunday expressed concern over the fact that the representation of women in international disability forums is shrinking ...

Disability Australia and Family Advocacy: 2016 Federal Election

Disability Australia Election Platform 2016
Disability Australia calls on all political parties to support our Election Platform.

View the Disability Australia Election Platform in a PDF document or Word document

Family Advocacy on Federal Election 2016 

Family Advocacy Communique, June 2016
With the upcoming Federal Election just around the corner, we have put
together a fact sheet that explains the two main issues for Family Advocacy: 

   1. Advocacy for your family member with disability

   2. Inclusive Education

The fact sheet contains our recommendations and key questions you can be thinking about and asking your local candidates.

• Read our Federal Election 2016 Fact Sheet

Short notice: survey on publishing student data

From Down Syndrome Australia, via Facebook today (Note the survey closes on Thursday 30th June):

The Australian Curriculum, Assessment and Reporting Authority (ACARA) have asked our members if they can participate in an important survey to examine the feasibility of publishing Students with Disability data on the My School website. 

We would like to urge as many people as possible to participate in this survey which closes on 30 June.

Resources: online and on the air

Down Syndrome Australia: Easy Read Facebook page - complements the Easy Read edition of the  Down Syndrome Australia website

Accessible Arts Newsletter, June 2016

The Power of 'No'

Service, Support and Success, Volume 5, Issue 6, June 2016
... think about our members (term used for the people we serve). Depending on their history, they may have been in situations where saying “NO” was not allowed or not respected, but I’m sure they heard it, repeatedly, throughout their day. I spent my early years in the field experiencing many different types of support settings, where a member saying “No” was not allowed and certainly not respected. ‘No’ is a word that invokes negative feelings just by hearing it and, if it is the first word of a sentence, we will hear nothing else. We are in a new era where a member saying “NO” is a member saying “NO.” We need to value and respect all requests our members make and consider each request as we would want our requests to be considered before we make a decision ...

• Back issues of Service, Support and Success

On the airwaves and on track
Wendy Andrews, Coffs Harbour Advocate, 16 June 2016
Community radio station 2CHY is giving young people with disabilities a voice. As the result of a grant received from the Law and Justice Foundation, 2CHY is working with students from Toormina High School's Support Unit on the My Voice, My Ability, My Rights program.

"What we're doing with the My Voice, My Ability, My Rights program is training students in broadcasting and interviewing skills," station manager Becky Cole said ...

Dennis McGuire’s Mental Wellness seminar now available online!

In May this year Dennis McGuire visited Australia to deliver a series of seminars to families, health professionals and support workers on Mental Wellness and Healthy Living for People with Down Syndrome.

Uniquely placed to share his insights and learnings, Dennis McGuire is an internationally renowned behavioural expert, the co-founder of the Adult Down Syndrome Clinic of Chicago and co-author of Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome.

Down Syndrome NSW has received tremendously positive feedback about the Mental Wellness and Health Living seminars where Dennis McGuire shared his 30 plus years of experience, knowledge, wit and wisdom about creating a healthy and happy life for people with Down syndrome.

So we are delighted to bring you an online resource of Dennis McGuire delivering highlights from the seminar.

Featuring two, one-hour versions (we have also included the session for Adults with DS), the seminar includes:

• Common behavioural responses in people with DS 
• Promoting strengths and creative potential 
• Behavioural characteristics involving social skills 
• Promoting healthy self-esteem. 

This resource, created especially for Dennis McGuire’s Australian visit, will be an invaluable reference for years to come.

It is the next best thing to having been there!

Available for purchase online now

• Down Syndrome NSW Members - $75
• Non-members - $100 

New book releases

Entwined, by Joyce Wallace Scott, is due to be released 28 June 2016

Judith Scott, despite the challenges of Down syndrome, profound deafness, and thirty-five years of institutionalization has recently been hailed as "One of the most important artists of the twentieth century”, and through television and the press, her mythic journey from dark institutional anonymity to international acclaim has attracted widespread public attention.

In Entwined, Joyce Wallace Scott takes us on a powerful voyage of self-discovery through her twin sister’s silent world, providing a moving account of their shared childhood, in which may lie the origins of Judith’s latent creative genius. It is an epic story of love and determination; of vulnerability and powerlessness; of disability and genius ... read more here

Finding a Way, by Graeme Innes, former Australian Disability Rights Commissioner
... after a long and successful career – from lawyer to company director to Human Rights Commissioner – he has written his story. Finding a Way shares his memories of love and support, of challenges and failures, and of overcoming the discrimination so many people with disabilities face ... read more here

Book launch in Sydney 19 July 2016 in Sydney - tickets