Autism acceptance month: links

Those interested in the dual diagnosis of Down syndrome and autism will be interested in these links:

Can you make it to the end?
National Austistic Society, UK
Watch our film and experience what sensory overload is like for a boy on the autism spectrum.

• Warning: this film contains flashing lights, bright colours and loud, sudden noises.

Recommended by the Adult Down Syndrome Clinic:

Fascinating images reveal how people with autism see the world

Rebecca Harrington, Tech Insider, 29 October 2015

People with autism see the world differently.

They typically don't look at faces as closely; they can be more easily overwhelmed by too many stimuli; and they may fixate intensely on one thing at a time ...

• Previous posts on this blog about the dual diagnosis of Down syndrome and Autism

More people with Down syndrome ...

Ben Paior Smith on Q and A, 4 April 2016

News.com, 5 April 2016
... "Earlier in the program (Q and A, ABC TV,)16-year-old Ben Paior Smith won the audience over with his plea for more support.

“I go to a mainstream school. I need extra help there. I want to know when the Government will help students with disabilities like me properly so I can get a good job when I finish school.”

South Australian MP for the Dignity for Disability party, Kelly Vincent, who herself has cerebral palsy, said funding wasn’t the only problem — there was also a “culture of low expectation”.

“Particularly students with disabilities, we repeatedly see them burdened with low expectations because we don’t expect them to do much.

“We are not investing in that culture that would actually see them asked, ‘what do you want to achieve? What are your skills, assets, capabilities?" ...

• Q and A, 4 April 2016 on ABC iView until 18 April 2016

Peter's Speech - "Stop Discriminating Down!" (Video 4m 49s)
Jerome Lejeune Foundation USA, 14 March 2016

Peter, a young man from Holland with Down syndrome, shares his life and his sadness that so many choose to abort people like him after a prenatal diagnosis.

 Australian Down Syndrome Swimming Team raising $300,00 to compete in Italy as they chase Paralympics representation
Travis Meyn, Courier-Mail via Fox Sports, 23 March 2016

Meet the group behind a push to have athletes with down syndrome given a fair crack at the Paralympics. The Down Syndrome Swimming Australia national team is raising $300,000 to compete at the World Trisome Games in Italy in July ...

The first woman with Down Syndrome to be cast as the face of a beauty company

Emma Spedding, Daily Telegraph (UK), 4 April 2016When it comes to casting, critics often argue the beauty industry has a tendency of representing one narrow, unrealistic type of beauty. But Katie Meade is the latest model who is helping to change all that; she is the first model with Down Syndrome to become the face of a beauty campaign ... "beauty belongs to everybody" ...

Queensland boy with Down syndrome newest face of BondsAmy Mitchell-Whittington, Brisbane Times, 28 March 2016
A Queensland boy with Down syndrome has become the newest face for Bonds after he won the People's Choice category for 2016.

Hyperreal Tales (Video 6 m)

Bundanon Trust, ABC Open, 17 March 2016

Hyperreal Tales has been three years in development.  Director/choreographer Philip Channells and filmmaker Sam James worked with nineteen storytellers and artists, initially contacted with the help of local health and disability service providers ... 

• Group photo on Bundanon Trust Facebook page today (5 April 2016)

People with Down syndrome

Evidence of the varied interests and skills of people with Down syndrome continues to stream in from the media. While it will be wonderful to reach the time when this is not 'news', it is important that such knowledge builds in the community by continuous exposure, as does the less welcome news of barriers to inclusion, safety and respect.

Meet the Sydneysiders with Down syndrome giving back to their community

Ehsan Knopf, 9News, 23 March 2016
Members of a Sydney-based social group for people with Down syndrome say they’re delighted to be given the chance to pay it forward ... In the last year, the organisation has prepared and served meals to children at the Ronald McDonald House and Bear Cottage, a palliative care facility for children with terminal illnesses ...

Learning difficulties won't stop them acting Shakespeare
Channel 4 News (UK), 23 March 2016
Meet the actors with Down’s Syndrome and other learning difficulties challenging expectations by performing Shakespeare.

Sister of former NRL player Craig Wing set to hit Sydney’s airwaves on Eastside Community Radio
Jenny Galbraith, Wentworth Courier, 27 March 2016
A radio program in Sydney’s east is giving a voice to those in the community who are rarely heard. Kirsty Wing, 26, who lives with Down syndrome, will host her own show on Eastside Community Radio on March 29 as part of a project by disability service provider The Windgap Foundation ...

‘Bachelor pad’ offers independence for seven men with Down syndrome
Gene Warner , The Buffalo News, 23 March 2016
Talk about a cool bachelor pad. Seven young men, most in their late 20s, live together in a seven-bedroom house in Eggertsville, complete with a pool table, in a setting described as “flat-screen TV heaven.” ...

Jessica Parsons Offers Inclusive Yoga for All

Carolina Starin, Santa Barbara Independent, 29 March 2016
“Yoga makes me feel powerful,” says a bubbly Jessica Parsons as she readies for instructing her weekly Inclusive Yoga for All Abilities class at Santa Barbara's Carrillo Rec Center. Parsons connects deeply with her students through her own yoga accomplishment — possibly being the first and only person in the country with Down syndrome to become a certified yoga instructor.

Corrie's Bairstow: 'amazing to be considered a role model'

BBC, 21 March 2016
Coronation Street's Liam Bairstow says it's an honour to be considered a role model for people with Down’s Syndrome. Speaking to Coronation Street fan Grace Stockdale for Down's Sydrome Awareness Week, Bairstow said he feels it's a "great honour" to speak up for those with Down's Syndrome and offered advice for those looking to follow his path into acting ...

Studio ARTES sustains enormous loss in fire

Click here to donate online

You might be familiar with Studio ARTES in Hornsby in Sydney's northern suburbs, by knowing members (people with disability), or staff, or from having seen some of the spectacular art works that are produced there. 

We know them for all of those reasons, and as a a highly regarded, innovative organisation supporting a significant number of people with Down syndrome, whose values are congruent with those of Down Syndrome NSW. 

Approximately 140 people with disabilities attend Studio ARTES regularly to participate in recreational, learning and social activities, and some are being supported in the development of career paths in visual arts.

We are very sorry to hear that early yesterday morning (Sunday 3 April), the main studio, the location for many of the programs and storage of art equipment and art works, and the administrative centre, sustained extensive damage from a fire in an adjoining building, and is likely to be demolished.

 Luckily, no-one was on site, and there were no injuries. 

Studio ARTES is located to the immediate right of the flames

While some activities occur at other venues, the damaged building is the major centre for Studio ARTES, and the losses are great - in both material and social terms ...

... The fire has caused extensive smoke, water and structural damage, with the roof caving in. We have lost everything. Artworks, filming equipment, computers, costumes to name a few ...  and our home for 140 members and 35 staff. 

We are all devastated. Any assistance you are able to provide will be graciously accepted as we begin to rebuild ... (appeal page)

Studio ARTES is determined to re-build, and to sustain its support programs and activities while that happens. Supporting the members will involve promoting understanding of what has happened, what needs to happen now, and reassurance that the services and opportunities offered will be available throughout a period of disruption, change and re-establishment. Studio ARTES is already taking steps to achieve those aims.

An appeal that you might wish to support has been launched here, and more information will be released in the immediate future. The appeal is for cash and/or in kind donations - art supplies or performance materials or equipment. Please go online to the Studio ARTES website or contact Lliane Clarke on 0423 853 210 or llianec@optusnet.com.au

Scrapheap Adventure Ride 2016: fund raising for Down Syndrome NSW

The Scrapheap Adventure Ride 2016 (the seventh Scrapheap event) destination has been announced - Kallara Station, Tilpa NSW:

The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising money for people with Down syndrome. 

In just six years the event has raised nearly $400,000 for Down Syndrome NSW.
Riders begin their journey at home or wherever they like but arrive at the same destination. 

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

Our target for 2016 is 100 riders raising $100,000 for Down Syndrome NSW.

• Scrapheap Adventure Ride 2016 website
• Scrapheap Adventure Ride 2016 on Facebook 

Weekend reading and viewing: 2 - 3 April 2016

School: sorted; how to get there? hmmmm …
Alex McAuley, The Life That Max Built, 16 march 2016
So, having finally found a school for Max where he was happy, we started to settle down into a more harmonious family life. There were still problems: because Max’s school was some distance from home and there was no school bus (anyway, it would have been too much for him to have caught one were there one to be caught), he qualified for the school transport scheme. This meant that every morning a taxi would arrive at our house to collect Max and take him to school. Perfect, I hear all you frazzled mums saying, thinking of your morning panic as you try to get everyone dressed, lunch packed and out the door to catch to bus. Well, yes, it should have been. But unfortunately it didn’t always work out that way ...

Powering inclusion: changing cultural perspectives of Down syndrome and disability through inclusive imagery and messages

Catia Malaquias's speech at the 5th World Down Syndrome Day Conference, United Nations, New York.
... Now that we have achieved so much in the way of formal rights, how do we support and accelerate social inclusion of people with Down syndrome and other disability? How do we challenge the legacy of an entrenched history of segregation and dislodge unconscious bias that defaults to exclusion; the belief that people with Down syndrome should be somewhere else – in “special” schools, “special” workplaces and residing in “special” homes.

What will it take to reshape attitudes to disability and for society to revalue people with Down syndrome? ...

Indiana abortion law won't help the disabled
David Perry, USA Today, 28 March 2016
... As I watched my son dancing in the rear-view mirror, I knew a few things for sure. HB 1337 and laws like it won’t help people who have Down syndrome. Moreover, they aren’t really intended to do so. The goal of this law is to silence women and doctors by criminalizing conversations about abortion. People with Down syndrome are just collateral damage because that’s going to make the words “Down syndrome” even scarier ...

My son Maxwell
Molly Macleod, DSA (UK) blog, 21 March 2016
My son Maxwell was born on World Down’s Syndrome Day (21 March) in 2014. This year’s theme is #My FriendsMyCommunity and I’ve been thinking about how Maxwell has taught me about real inclusion and acceptance.

With a pre-natal diagnosis for Down’s syndrome we were expecting Maxwell…or actually, we thought we knew what to expect ...

Midwives and babies in charity calendar for Down's Syndrome

ITV News (UK), 31 March 2016

A group of midwives from Leicestershire has posed nude for a charity calendar to raise money for the Down's Syndrome Association.

The calendar also features two babies with Down's Syndrome, who are photographed with their mothers as well as playing with each other.

Joanna Proud, a midwife from Shepshed in Leicestershire, came up with the idea. Orders have been coming in from as far afield as Australia, Brazil and Portugal ...

Autism Acceptance Day/Month: Down Syndrome and Autism dual diagnosis

Tomorrow, 2 April is Autism Acceptance Day, and April is claimed as Autism Acceptance Month internationally - very relevant for those with the dual diagnosis of Down syndrome and autism and their families.

It is believed that 7-18%1(some research suggests up to 39%2) of individuals with Down syndrome also have autism spectrum disorder. Both Down syndrome and autism can be challenging disabilities separately, without the combination, however when combined the challenges are multiplied and can be quite complex ... Down Syndrome-Autism Connection

Down Syndrome Australia hosts a Facebook page for people with a dual diagnosis of Down syndrome and Autism Spectrum Disorder and their families. It is a place for sharing information and support about the dual diagnosis of Down syndrome/Autism Spectrum Disorder - DS/ASD.

• Visit the page here, and click 'like' to join the group

Assistiveware is repeating its excellent-value discount offer from last year, 2 - 4 April 2016

Here at AssistiveWare, we are passionate about supporting our diverse user community and April is the perfect time to highlight the valuable contributions autistic people make in our world. This year, like last year, we made the decision to recognize April as Autism Acceptance Month and April 2nd as Autism Acceptance Day. And we’re offering a discount…not just on one product, but two. Both our symbol and text-based communication apps — Proloquo2Go and Proloquo4Text — will be offered at a 50% discount. An incredible value! ... click here for details and check with AssistiveWare about the best time to order taking international time zones into account.

Assistiveware published this article in honour of World Down Syndrome Day:

Young woman with Down Syndrome finds her communicative independence, AssistiveWare, 21 March 2016
... Diagnosed with Down Syndrome and moderate/severe hearing loss, Elysha has used a combination of sign and voice all her life. Even though she’s fluent in sign language, Elysha felt isolated because only a few people also master sign. Often she would give up rather than try to repeat herself over and over, and so became more withdrawn ... Now Elysha uses Proloquo4Text on an iPad Mini with bluetooth speaker, just in case she’s in a noisy environment. Lisa is her voice of choice because she likes the way it sounds; she’s female, adult and has an Aussie accent! ... 

Focus on Autism Week 2- 8 April
Lines of Inquiry, Edition 12, March 201

To help raise awareness of autism, Emerald is providing free access to relevant content from the journal, Advances in Autism, during Autism awareness week (2-8 April 2016). These articles are free to access from 1 April to 15 April 2016 and will help raise awareness of the issues involved in working with this client group ... links to the free articles are here


• Previous posts on this blog about the dual diagnosis of Down syndrome and Autism

New initiative from My Choice Matters

Launched to day, designed for people with disability, with support when needed - an innovative course to help people with disability to become leaders in their own lives. Now that's an idea worth looking into:

Become a Leader online

This is an online course designed by My Choice Matters to support you to be a leader in your life and in the community around you.

It is based on the face-to-face course that we ran across the state. It gives you the chance to learn at home and at your own pace. So take the leap and become a leader today! (Home page, Become a Leader Online website)

Become a Leader Online will take you through understanding what leadership is, asking for what you want, making changes, and working with others. These are all very important steps on your path to become a leader.

Being a leader will help you grow a cause you believe in, help others, negotiate the best out of every situation. These skills will be important when you're planning for the NDIS as well as generally in your life ... (About Us page, Become a Leader Online)

Visit the Become a Leader Online website, and find out much more about people who have done the course, and how you can do it too.

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 

One of the Kids
Family Advocacy - learn about inclusive education, hear stories of success from the regular classroom and think about how inclusion can work for your child.

Various dates until June 2016 - across regional and metropolitan NSW

Future Planning

Family Advocacy - a workshop for families of people with disability wanting to take a pro-active approach to planning for the future.

Thursday 28 April 2016 - Wagga Wagga

Monday 9 May 2016 - Coffs Harbour

Friday 24 June 2016 - Dubbo

Rights

Disability Discrimination Commissioner
The disability community is very interested in the call by the Australian Human Rights Commission for expressions of interest in the position of Disability Discrimination Commissioner published on 18 March 2016. The role has been filled part-time by another Commissioner since the retirement of Graeme Innes in 2015.

• Job ad sparks commissioner hope among disability sector, Tom Nightingale, PM (ABC radio), 18 March 2016
• Wanted: disability commissioner, under big freedom umbrella, The Mandarin, 23 March 2016

Aboriginal Disability Justice Campaign
After many years of being hosted by our good friends at People with Disability Australia (PWDA), the Aboriginal Disability Justice Campaign (ADJC) is pleased to announce the launch of their new website.

The ADJC is a national advocacy campaign that advocates for changes to legislation, policy and practice that leads to the imprisonment and indefinite detention of people with cognitive impairments. The ADJC seeks to highlight the disproportionate impact on Indigenous Australians with cognitive impairments. 

Many of these people have not been convicted of a crime and have been found mentally impaired and unfit to plead. There is a larger group of people with cognitive impairments that cycle in and out of jail. These people have been convicted of crimes. 

The ADJC is particularly concerned about those people who are indefinitely detained in our jails and forensic units around the country.

• Aboriginal Disability Justice Campaign on Facebook

Inspiration Porn: Don't Take Pictures of Disabled People Without Their Consent

David M Perry, How Did We Get Into This Mess? 22 February 2016
Some suggested rules for life as a good person:

1. Don't take pictures of disabled strangers without their consent.
2. Don't share the pictures you shouldn't have taken to the internet without their consent. Their story is not your story to do with as you see fit ..

'No one should have to wait four years for an explanation'
Monica Clifford, The Guardian (UK), 21 December 2015
Monica Clifford’s sister Anne, who had Down’s syndrome, died in July 2010, aged 53, in Mayday hospital in Croydon, south London. The hospital did not investigate her death ... From the beginning I felt an underlying suggestion from the hospital that there was little point in treating Anne, because people “like her” don’t recover from serious illness ...

Book now for Dennis McGuire in Melbourne and Sydney: May 2016

The next big event for Down Syndrome NSW:

Down Syndrome NSW is delighted to announce that Dennis McGuire PhD, internationally renowned Down syndrome behavioural expert will visit Australia in May, 2016. Dennis is co-author of Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome.

Dennis McGuire is a highly sought after speaker on the areas of mental wellness and ageing in people with Down syndrome (DS).  In 1992 Dr McGuire, with colleague Dr Brian Chicoine MD, established The Adult Down Syndrome Centre  in Chicago. During his tenure as Director of Psychosocial Services for the Centre, Dennis served the health and psychosocial needs of over 5000 adults with Down syndrome. In 2013 he joined the Global Down Syndrome Foundation to establish a centre of excellence for the care of adults with DS and is now in private practice. He regularly presents at national and international conferences and has contributed to numerous publications.

Dennis McGuire will present a series of seminars in Melbourne and Sydney for parents, carers and service providers. There will be separate professional development seminars for health professionals with an interest in intellectual disability.  Interactive webinars with Dennis McGuire will be announced shortly for people living outside the Melbourne and Sydney areas.

‘Dennis is a warm and engaging speaker with a wealth of lived experience in understanding people with Down syndrome and creating the best conditions to encourage mental wellness,’ said Margot Elliffe, DS NSW Board member and chair of the Mental Wellness and Healthy Ageing 2016  Tour Committee.  ‘This is a unique opportunity for anyone in the Down syndrome community to get first-hand information to support healthy ageing and mental wellness for all people with Down syndrome'.

Dennis McGuire will be in 

Melbourne on May 6 (professionals) and  May 7 (family and carers) 

Sydney on May 13 (professionals) and May 14 (family and carers)

For further information call 02 9841 4444 or click register Mental Wellness and Healthy Ageing 2016

 Mental Wellness of Adults with Down Syndrome  2006,
 The Guide to Good Health for Teens and Adults with Down Syndrome 2011.

Resources

Hand in Hand is the newsletter of the Down Syndrome Research Foundation, based in Vancouver. It is published four times per year in March, June, September and December. Each issue is packed with practical information for families and professionals working with individuals with Down syndrome, along with updates on what's happening at DSRF. You can read it online, download issues or subscribe.

Anxiety: Roaming Through the Stepping Stones
Melanie Rose and Kevin Alexander, Service, Support and Success, Vol 5, Issue 23, March 2016
We work in an acute in-patient unit of the North Bay Regional Health Center that supports people with Dual Diagnosis. We support a revolving door of people as one of our program’s goals is to return a person back into a safe community home as soon as possible. Some people come to us with a massive library of their history and tips on how to best support them. Sometimes though, people come with no history and a great deal of trauma ...

Plain Language Guide to Supported Decision Making

Centre for Inclusion and Citizenship, 29 October 2015

This video explores how a group of self advocates with developmental disabilities supported by the Langley Association for Community Living created a plain language guide to supported decision making to enable people who have difficulty understanding their making decisions rights, or need support to make decisions about their life.

Taking Action on Education: All students learning together - new booklet
To assist families in pursuing inclusion at school in a practical way Family Advocacy has created a new booklet. Taking Action on Education – All students learning together, aims to assist families in their advocacy efforts when talking to schools and the community on the importance of their child having an inclusive education.

The booklet will be provided to all participants at Family Advocacy's inclusive education workshops One Of The Kids or contact Family Advocacy on advocacyandleadership@family-advocacy.com.

Early Intervention survey - Dr Kathy Cologon, Macquarie University

Parents/caregivers of children in early childhood intervention services are invited to take part in a survey conducted by Dr Kathy Cologon, a well-known researcher in this field at Macquarie University:

Priorities and practices in early intervention: Parent perspectives

... The survey involves the completion of a questionnaire for parents/caregivers who have a child (or children) who participates in early childhood intervention services in Australia. This research is being conducted by Dr Kathy Cologon from the Institute of Early Childhood, Macquarie University (email: kathy.cologon@mq.edu.au or phone: 9850 9864). 

Early intervention services and supports are going through a period of considerable change in Australia at present. Through exploring the views and experiences of families and staff who participate in early intervention, this study will contribute evidence that is important for developing policy and practice in early intervention ...

The questionnaire incorporates 14 open-ended questions, followed by questions that need to be rated on a scale from 1-5 (these questions relate to your experiences of and your priorities for early intervention support). The final section asks for some brief demographic information and provides the opportunity for you to make any additional comments/suggestions if you wish.

The survey should take approximately 30-45 minutes to complete. You are free to skip any questions that you do not wish to answer ...

• Link to the survey 

News and commentary from the broader disability community

Poverty and the Perfect People
Dave Hingsburger, Rolling Around in My Head, 23 February 2016
... The conversation was interesting for a short while and then it became really strange. As she came to realize that my emphasis was on people with intellectual disabilities, and as she came to understand what that term meant, her interest began to immediately wane. She actually said that at least poverty didn't effect 'those people' in the same way as 'regular people' because they are happy just with the simple things ...

Housing transfer of groups homes to the NGO sector 

Family Advocacy Communiqué,  March 2016

Do you have a family member or friend in an ADHC group home, soon to be transferred to the NGO sector as the NDIS rolls out? Please get in touch.  We are advocating that housing should not be handed over to service providers, as this could result in the person having few options if problems arise. Traditionally in group homes, the house and supports have been locked together, so if one isn’t working (for example, if the house no longer suits a resident’s needs) the person loses their supports as well. The control exerted in group homes as they are currently structured can impact every area of a person’s life – access to employment, relationships outside the home, relationships with family and more. It also leaves people vulnerable to abuse as they are likely to hesitate to complain. The current transfer plan means this will not change. Read our Position Statement on Housing for more information around the separation of housing and supports. A better situation is one where someone can change their supports without necessarily having to move, and vice versa. The accommodation transfer is the perfect time to make sure support is independent from housing. ADHC have said they cannot commit to this, so we need your help. Please call or email Meg on (02) 98690866 Monday - Wednesday or meg@family-advocacy.com anytime, if you are facing this situation.

Disabled people experience violence, elder abuse and neglect in 'epidemic proportions', says rights group
Sarah Gerathy, ABC News, 18 March 2016
Horrific allegations of violence, abuse and neglect of disabled people have been detailed by a national disability rights advocacy group in a submission to a New South Wales parliamentary inquiry into elder abuse ...

• PWDA sumission on elder abuse, February 2016

One of the Boys (video 5m 2s)

Community Resource Unit Inc (Qld), 2 February 2016

CRU exists to create and promote positive change so that people with disabilities can belong to and participate in community life. Our constituents are people with disability, their families and friends and the people in paid roles who support them.

CRU engages with people on questions of values and vision; it provides inspiration and analysis and assists people to shape and deliver helpful, relevant and responsive human services and support arrangements ...

Painting a deeper picture of disability inclusiveness: Changing organizational culture and climate

Hannah Rudstam and Wendy Strobel Gower, Pulse (Linked In), 4 March 2016

For most people, the phrase “disability in the workplace” conjures an image of laws, guidelines, and policies. In other words, it is largely seen as a bureaucratic issue involving procedures and transactions. However, a new understanding of disability inclusiveness is emerging. After all the forms are filled in and all the boxes are checked, organizational leaders are now recognizing that something is still missing—something intangible that prevents the organization from fully leveraging all their talent ...

Apartment complex in Golden Valley could become model in housing for developmentally disabled

Don Jacobson, Star Tribune, 18 February 2016
A Twin Cities group is building a new kind of apartment for young adults who are developmentally disabled, a housing model they are touting as one that could meet a need for families with aging parental caregivers.

Since the 1970s, children and teens who are developmentally disabled have mostly lived at home with their parents or other relatives.

Now as adults, many are still living at home even as their parents grow older and less capable of providing them the help they still need. This, advocates say, is becoming a national crisis as the United States sees its first generation of people who are developmentally disabled outlive their parents — because of better health care ...

• Discussion of this article on Facebook was centred on whether the housing complex described is an example of choice for people with disabilities, or segregation?

I’m Raising a Kid With Microcephaly. Here’s What the Media Gets Wrong

Elizabeth Picciuto, The Daily Beast, 24 February 2016

In the panic over Zika virus, major media outlets are calling kids with microcephaly ‘misshapen,’ ‘heartbreaking,’ and ‘dystopian.’ The exact opposite of my joyful, funny, vivacious son ... I am all too aware, however, that people believe he’s an affliction who must be borne, rather than a source of joy and laughter and an occasional pain in the ass—just like my two typical kids.

Change of organisation's name
The organisation previously known as Children with Disability Australia has recently updated its name to Children and Young People with Disability Australia (CYDA).

CYDA is the national peak body representing children and young people (aged 0-25) with disability, providing a link between the direct experiences of children and young people with disability and their families to federal government and other key stakeholders.

Weekend reading and viewing: 26 - 27 March 2016

Making Down Syndrome Fabulously Ordinary (podcast)

Penny Johnston, Babytalk, 774 ABC Melbourne, 21 March 2016
What do you do when you're the mum of a little bloke with Down Syndrome? Pretty much the same as a mum of a little bloke with just two 21st chromosomes. Leticia Keighley is a very proud mum of a delightful four year old Wade.

A Pill for Down Syndrome

Amy Julia Becker, The Atlantic, 15 march 2016
New research indicates that a treatment may one day lessen the symptoms of the disability. In the meantime, a mother reflects on what that would mean for her child ...

What was once a parlor game—would you take away the Down syndrome?—may one day be a reality ... I am not certain that Penny needs medical interventions to improve her cognition, but I know she needs a social context that welcomes her ...

Breaking the Circle of Sadness

Christopher Blunt, Mercatornet, 21 March 2016

How a little girl with Down syndrome changed my heart and opened my mind
... I concluded that these families of children with Down syndrome were most likely telling themselves they were “blessed” and “enriched,” as a coping mechanism. Keep telling yourself you’re happy having a 47-chromosome child, if it makes yourself feel better, I thought. As for me, I’ll stick with the 46-chromosome version.

As it turned out, the choice wasn’t mine to make. I would get to learn first-hand just how shamefully presumptuous and ignorant my attitude had been regarding families which included a member with Down syndrome ...

The day I won the lottery

Micha Boyett, For Her, 21 March 2016
... It’s not that Ace is somehow better than us, more angelic than us, or operating on a different level of human goodness. It’s simply that he doesn’t seem to grasp for power. He’s not desperate for importance. He simply longs to love and be loved, to know and be known ...

Voices from 'Far from the Tree' - Deirdre Featherstone and Catherine Madden on Down Syndrome. Andrew Solomon, 16 March 2016

Video of in terview with a mother and daughter for Andrew Solomon's acclaimed book, Far From the Tree (available for members to borrow from the DS NSW library).

Is this the world's oldest living man with Down's syndrome? 'Cheeky chap' turns 80
Express (UK), 21 March 2016
A "cheeky chap" who defied all medical odds could be the world's oldest living man with Down's syndrome after celebrating his 80th birthday. Joe Sanderson turned the milestone age on Saturday and celebrated with family and staff at Hazelgrove Court Care Home in Saltburn, where he lives ...

Don't ask what's 'wrong' with my son with Down syndrome
Maureen Wallace, She Knows, 12 March 2016
I’ve parented a child with Down syndrome — the most commonly occurring genetic condition — for almost six years. Despite a lot of practice, I still find myself caught off guard by strangers’ questions, and I have done a physical and emotional double take if someone asks what's "wrong" with Charlie ...

I don't care
Carolina Giammetta on Vimeo (14m 28s)

A mother to be faces the high possibility of having a child with Down's Syndrome and befriends a family who share their experiences and guide her towards a different perspective. #‎MyFriendsMyCommunity‬

News and commentary on the NDIS (46)

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.

February 2016 eNewsletter - NDIS

What's new on the NDIS website

Includes news and event information

• Statement from NDIA Chairman, Bruce Bonyhady
• Bruce Bonyhady Speech: ‘We Must Grasp This Opportunity’

Every Australian Counts - news

Disability Loop - news

Western Sydney jobs boom forecast as NDIS rolls out

Rachel Browne, Syndey Morning Herald, 14 March 2016Demand for disability services will drive a jobs boom in Sydney's west and south west as the National Disability Insurance Scheme starts to roll out from mid-year ... According to the agency's analysis, almost 30,000 new jobs will be generated by demand for disability services across NSW as the number of people supported under the NDIS grows to 140,000 over the next three years.

Time for NDIS critics to show their cards

Craig Wallace, Open Forum, 8 March 2016

There have been comments from the business sector that the rollout of the National Disability Insurance Scheme (NDIS) should be slowed down. President of People with Disability Australia, Craig Wallace, says if the Business Council of Australia really thinks that Australians with disability and families shouldn't get reasonable and necessary support, it should have the courage and integrity to say so ...

National Disability Insurance Scheme stoush triggers alarm

Miki Perkins, The Age, 8 March 2016

What does a man in his forties hope for in life?

A decent job and some money in the bank perhaps. For some, a family. For others, travel and a rich social life.

George Taleporos has some of these. But what he wants most is to be fully independent. Taleporos, 40, uses a wheelchair, and has to rely on family for 24-hour care. Like thousands of people with a disability he is looking forward to July, when the National Disability Insurance Scheme will expand from its trial sites to cover the country ...

The NDIS: there, but for the grace of God, go us all

Nicholas Gruen, Club Troppo, 7 march 2016

... The NDIS is a Good Thing. And if it’s not fully funded, and if its costs blow out and if it has its share of snafus (all of which I expect are more likely than not), we’ll cope with them, like we cope with falling iron ore prices and with farcically designed VET Fee HELP schemes and the like ...

Reprieve for NDIS Board Members

Pro Bono News, Australia 7 March 2016

The Federal Government has given a reprieve to members of the inaugural board of the National Disability Insurance Scheme, backing away from its earlier plans to replace them all with heavyweights from the corporate sector.

However, claims that the Federal Government is also attempting to remove control of the NDIS from the states have caused anger in the disability sector ...

Peer Connect website

The Peer Connect website is for people living with disability, their families and supporters. It has information about:

• Peer Support Networks
• having choice and control in your life
• planning and decision making
• the NDIS 

The website is part of a project called the Disability Support Organisation (DSO) Capacity Building Project.  The project involves 18 membership-based disability organisations from around Australia who help up to 20 Peer Support Networks.

The project has been funded through the NDIA Sector Development Fund for a two-year period.

NDIS Tip: using your plan more flexibly
Sam Paior, The Growing Space, 17 March 2016
As the NDIS goes through a massive growth spurt with all the associated growing pains, here's some information I think you should know about using what’s in your kiddo’s plan. And, in case you’re a bit of a Nervous Nellie with this stuff, I can let you know that NDIS have officially checked this post to make sure the information provided is not misleading ...

Research news and commentary #3 for 2016

MGHfC study finds positive attitudes prevail within families of people with Down syndrome

Massachusetts General Hospital for Children, 8 March 2016

... “Our study demonstrates that positive attitudes tend to dominate within modern-day families who have members with Down syndrome, although the challenges were not insignificant for some,” says Brian Skotko, MD, MPP, co-director of the Massachusetts General Hospital Down Syndrome Program and corresponding author of the study. “These findings come at a crucial time when more pregnant couples are receiving prenatal diagnoses and wondering what the diagnosis will mean for them.” ...

• Most Families Cherish a Child With Down Syndrome, Survey Finds

Learning with the Lights Out

Jenny Rood, The Scientist, 1 March 2016
... Toddlers who sleep less than 10 hours display lasting cognitive deficits, even if they catch up on sleep later in their development (Sleep, 30:1213-19, 2007). The effects are particularly strong in children with developmental disorders, who often suffer from sleep disruptions. “Kids with Down syndrome that are sleep-impaired look like they have very large differences in language,” says Jamie Edgin of the University of Arizona who studies sleep and cognition in such children. When comparing Down syndrome children who are sleep deprived with those who sleep normally, she has observed a vocabulary difference of more than 190 words on language tests, even after controlling for behavioral differences ...

Child disability and families in Australia research project

Australian national University (ANU), Dept of demography

Investigating the ways in which families in Australia having a child or children with disability are different or similar to families in Australia having a child or children with no disability ... Parents of a child with disability who is currently aged from 0 to 19 years are invited to participate in research interviews ...

Healthy Aging in People with Down Syndrome
Elizabeth Head and Frederick Schmitt, University of Kentucky (via DSRF blog), 12 February 2016
People with Down syndrome are living long, productive and healthy lives. However, although many people remain healthy as they get older, there is an increasing risk for developing Alzheimer’s disease. In people with Down syndrome, this risk is much higher because of the extra copy of a gene for the amyloid precursor protein on chromosome 21 ... The good news is, not everyone with Down syndrome will develop dementia even in their later years. Our goal is to identify ways to help people with Down syndrome age gracefully and enjoy their older years ...

Genomic analysis pinpoints a potential target for treatment of Down syndrome

Bill Hathaway, Yale News, 26 February 2016

A study of changes in the patterns of gene activity in the brains of people with Down syndrome reveals that the formation of the brain’s white matter is affected throughout life, a finding that suggests treatment might be possible for the condition that affects 400,000 Americans ...

• Researchers Discover Possible Key to Affecting Brain of People with Down Syndrome. Boston University School of Medicine, 25 February 2016

Study suggests more effective speech therapy approach for children with Down syndrome
Neurscientist News, 5 February 2016

A new study indicates that children with Down syndrome who have motor speech deficits have been inadequately diagnosed, which could have a major impact on the interventions used by speech pathologists when treating patients ...

Project aims to improve learning in young people with Down Syndrome

Kristie Auman-Bauer, Penn State News, 5 February 2016
Children with Down Syndrome face many unique challenges, including being able to communicate effectively as they enter into their school years. A new Penn State study is looking to improve communications aids to better meet their academic and social needs ...

NI  (Northern Ireland) research shines light on Down’s syndrome mystery
Ulster TV News,  8 February 2016
Ulster University scientists undertaking ground-breaking research have discovered one of the underlying causes of why many children with Down’s syndrome have poor near-vision

• Accommodation deficit in children with Downsyndrome: practical considerations for theoptometrist, Julie-Anne Little, Clinical Optometry 2015:7 81–89

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 

Golf development program

Special Olympics - for anyone aged 10 years and over who has an intellectual disability. No experience is necessary to take part in the program, and all golf clubs and practice balls will be supplied. “Come and try” day will be held on Sunday 3 April between 1pm and 3pm. Participants should register beforehand. Then Sundays between 1pm and 4pm. The last Sunday of the month will be a competition development session where participants will test their skills on the golf course. Family members or friends are welcome to come along and help during the competition development sessions.
From Sunday 3 April 2016 - Werrington

Webinar: Early Childhood Early Intervention (ECEI)

National Disability Insurance Scheme - panel discussing the new ECEI approach, feedback from the Nepean Blue Mountains to date and how the NDIA will work with partners and participants so children and their families obtain the right supports to give them a good start in life. Join the discussion by sending your questions before or during the webinar.

Tuesday 5 April 2016 - online

Carers and the NDIS
Carers NSW - a free half-day workshop for family members and friends (carers) of people with disability aiming to provide carers with a general introduction to the NDIS, help carers support the person they care for to access the NDIS, and prepare carers to communicate their own needs in relation to the NDIS. Further information. Register online here.

7 April - 21 June 2016 - locations across NSW

Arts news

• For news about arts events and opportunities (including grants) across NSW, read the Accessible Arts Newsletter online, or subscribe.

Artist Run Initiative: Opportunity for artists with disability

Arts OutWest has recently invited expressions of interest from artists with and without disability living in the Central West to join this new artist run initiative (ARI) project.

Currently, ten passionate and engaged visual artists with disability have become involved. These artists are in the process of communicating and aiming for their first Central West ARI meeting in late March. 

Visit the Arts Out West website for much more information or to join the group contact Zoe Rodwell, Life-Long Learning Development Officer on 0434 368 033 or email zrodwell@yahoo.com.au or artsoutwest@csu.edu.au

Arts Activated: call for papers
Accessible Arts (AA) is now calling for proposals for papers, presentations or workshops to present at the 2016 Arts Activated conference, ‘Pathways to Practice’, 20 and 21 September at Carriageworks, Sydney Australia.

Submissions close 5pm Tuesday 12 April 2016 ... details

Australian Chamber Orchestra's Move Program

Accessible Arts Newsletter, February 2016
The Australian Chamber Orchestra's [ACO] Education Program aims to provide students with the skills and inspiration to explore and continue their artistic journey. As part of the development and growth of the Education Program, ACO Move was created to encourage young adults with disability to learn, practice and develop movement responses to music being played live in a safe and inclusive environment.

Dean Watson, the ACO’s Customer Relations and Access Manager, says, "ACO Move is about access in its broadest sense: access to what we do, who we are, how we work, think and create; access to musicians, instruments, staff, administration and facilities. This broad conception of access helps to encourage inclusive and transparent involvement in the creative process. ACO Move is set up to engage as directly as possible with the best disability arts practice, bringing together young adults with disability and members of the ACO - both musicians and staff."

• ACO Move 2016 – application form available online.

Accessible Arts Grants Program 2016
Accessible Arts is pleased to offer a second year of funding through its 2016 Small Grants Program. Supported by Lifetime Care, the program consists of two opportunities for not-for-profit arts and disability services/organisations and/or for groups or individual artists with disability living in NSW.

• The Small Grant offers funds for projects at any stage of their creative development and/or public presentation, of amounts between $5,000 – $20,000 Applications close 4 April 2016

• The Quick Response Grant offers funding up to $5,000 for artist projects that demonstrate evidence of urgency, unforeseen or sudden opportunity ...

All details and application information is on the Accessible Arts website, here.

A Training Ground for Untrained Artists

Nathaniel Richdec, New York Times Magazine, 16 December 2015
An Oakland nonprofit has a startling track record for helping developmentally disabled adults become prolific — and profitable — artists ...

It's still World Down Syndrome Day in half the world ...

It's still 21 March in some parts of the world, including New York, where the 5th World Down Syndrome Day Conference is in session. Catia Malaquais a Director of Down Syndrome Australia, is one of the speakers, on “Powering Inclusion: Changing Cultural Perspectives of Down Syndrome and Disability through Inclusive Imagery and Messages”.  You can see it online here.

Here are just a few more thoughts on World Down Syndrome Day 2016 (there are many, many more online):

A chat with our Chairperson on World Down Syndrome Day

NSW Council on Intellectual Disability, 21 March 2016

... My life is as busy as ever! I may have turned 50 but I don’t feel it. By saying this I mean I haven’t changed, I’m still young at heart.

There are so many things in my life that I never expected to do. Never even dreamt I would achieve. I’ve been part of NSW CID for a long time but I never dreamt I would be the Chairperson one day. This is my second term and I’m still really happy about that ...

What George did - World Down Syndrome Day
Dave Hingsburger, Rolling Around in My Head, 21 March 2016
"What if our baby is George? He has a job. He is in love. He has a full life. What if our baby is George?"

They have a wonderful son, with Down Syndrome.

Many of us with disabilities know that just by living our lives, out loud, out proud, in the most profound political statement we make ...

About Down Syndrome from a Woman with Down Syndrome
Jennifer Bekins, Talk - DS, 21 March 2016
I woke up this morning and started a long Facebook post on what World Down Syndrome Day means to me. Then the site crashed and those words disappeared before they posted.

I have many, many thoughts on Down syndrome. However, my sister April shared her thoughts on Down syndrome and with her permission I want to share them with you ...

We did nothing Special for World Down Syndrome DayEmbracing Wade, 21 March 2016
March 21 is world Down syndrome day. A day when our community comes together to celebrate the lives and achievements of people with Down syndrome. A day to raise awareness and educate the rest of the world about what it looks like to live with Down syndrome today. It’s also my mums birthday… and Wade and I did nothing special ...

Testing Times - World Down Syndrome Day 2016 (video 3m 8s))

Caroline White, Mar 8, 2016
Testing Times is a personal video for World Down Syndrome Day 2016 inspired by my own experience, illustrating how negative journalism and outdated, unbalanced information leads to people with Down's syndrome being wrongly perceived as less value to others. My son Seb is 8 years old. When we were given his diagnosis, 24 hours after he was born, we feared our future. Reality could not be further from that vision. We are a typical family and we wouldn't swap him for the world. He is an equal and valued member of our unit.

Take Care of You (4m 9s)

L'Arche International

What is meant by the word disability? For Raffaella Monterosso, from L’Arche Italy, it means when your father grows old and there’s nothing you can do but love him. As L'Arche celebrates World Down Syndrome Day, we honour all those with Down Syndrome who, like Raffaella, are taking care of their aging parents. Imagine the world differently.