Weekend reading and listening: 30 April - 1 May 2016

Reprise of a classic ... an address delivered by Dennis McGuire, who is visiting Australia next month:

If people with Down syndrome ruled the world 

Dennis McGuire, (US) National Association for Down Syndrome, 2005
This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original ...

Becoming a National Park Service Junior Ranger

Mark Leach, Down Syndrome Prenatal Testing, 8 April 2016
... Now, why am I sharing all of this on a blog devoted to prenatal testing and Down syndrome? ... I am sharing all of this because just maybe there is a mom, or a dad, or an obstetrician, or a politician who may wonder what a life with Down syndrome can be like. I am not holding Juliet up as a representative of all who have an extra 21st Chromosome. I’m simply sharing what a Spring Break trip was like for one girl who happens to have Down syndrome ...

Quality of Life

Paul Critchlow, Orange Juice Flavour Sky, 28 April 2016
How’s your life? Are you living on Quality Street or in Desperation Alley? Was it different last month? Last year? Ten years ago? Do you think it will be different in ten tears time? How exactly do we measure quality of life? Is it possible to measure the quality of life of someone else? ...

What I Learned When my Brother Joined the Workforce

Erin Coleman, Colorado Developmental Disbailities Council, 16 January 2016

... Since starting his first volunteer job at our local library, eight years ago, my brother has learned a lot about workplace etiquette; and I have had the privilege of learning something as well – the same unpredictability that translates to embarrassment for a sibling translates to an asset in the workplace.

Here are just a few of the things I have learned from working with my brother…

This episode of Conversations was rebroadcast today - in case you missed it, you can hear it as a podcast. People with Down syndrome and their families are mentioned several times, as they are in the book, Far from the Tree:

Conversations with Richard Fidler - Andrew Solomon 

ABC Radio, rebroadcast 29 April 2016 (original broadcast 2014)
Over the course of a decade Andrew talked with 300 parents raising exceptional, unusual or difficult children. Andrew talked to families of children who are different from their parents: children born deaf, or autistic, or transgender; and parents of child prodigies, and of criminals. 

Working on what would become his award-winning book, Far From the Tree, he reached the conclusion all of us have 'vertical identities' and 'horizontal identities'. He explains vertical identities are the bits we get from our parents: our religion, race and nationality. Horizontal identities, Andrew says, are characteristics that are ours alone, and are often the hardest parts for parents to accept ...

Choice and control: social care must not disable people with intellectual disabilitiesVal Williams,  British Politics and Policy blog (London School of Economics and Political Science), 8 March 2016

People with intellectual disabilities should not have to prove their abilities in independence skills before having the right to live the life they want, argues Val Williams. Policy should allow for a personalised focus on the identity of an individual, with personal assistants able to step back and facilitate choice. Inclusive research helps build up this attention to detail in a relationship and can highlight how shifts might occur from being mutually supportive to becoming defensive, judgemental or even abusive ...

Weekly reminder to book for Dennis McGuire's seminars in May

Newcastle

Saturday 7 May

Menatal Wellness and Healthy Living for Adults with Down Syndrome

Families, carers, professionals

• Register online

Sydney

Monday 9 May

Getting Strong, Living Healthy

Adults with Down syndrome (accompanied by a support person)

• Register online

Sydney

Tuesday 10 May

Promoting strengths and mental wellbeing in siblings with Down syndrome
Siblings

• Register online

Sydney

Friday 13 May

Promoting strengths and mental well being in Adults with Down Syndrome: Lessons learned from the Adult Down Syndrome Center, Chicago

Professionals

• Register online

Sydney

Saturday 14 May

Promoting strengths and mental well being in Adults with Down Syndrome: Lessons learned from the Adult Down Syndrome Center, Chicago

Families, carers (support workers can attend with family at a discounted fee)

• Register online

Governments and disability in the news this week ...

New disability commissioner on the way

Nine News via AAP 28 April 2016
The federal government has gazumped a Labor policy by moving to appoint a new disability discrimination commissioner.

Federal cabinet has agreed to appoint a full-time commissioner to advocate for the rights of people with disabilities, reversing a 2014 decision to abolish the role, which was absorbed into the age discrimination commissioner's job ...

Disability Program Review Calls for Public Input

ProBono Australia News, 27 April 2016
The federal government is asking Not for Profits to provide input into the review of the National Disability Advocacy Program (NDAP) to ensure the organisation meets the needs of people with disabilities.

The NDAP funds agencies that provide advocacy services to people with disabilities.

The government said the review is part of an ongoing process of improvement ahead of the rollout of the National Disability Insurance Scheme (NDIS).

Assistant Minister for Disability Services Jane Prentice said that the NDAP has been largely unchanged since it was introduced in the 1980s ...

ADHC Transfer Update
NSW Council for Intellectual Disability via Facebook, 28 April 2016

Minister for Disability Services, John Ajaka has announced today details of the expression of interest process for the transfer of ADHC services to the NGO sector in the 14 page document, Specialist Disability Services PreEOI Release

Director of Advocacy at CID Aine Healy has said that ... 

"CID is pleased to see some more details on the transfer process, this has been a very stressful time for people with disability and their families." 

However, with our initial review of the process some questions remain –

• We appreciate that people will have some choice, albeit limited, in choosing their future providers – but what happens if people with disability and where required their families or carers do not like any of the providers short listed in their area?

• What happens if the market does not provide? This is a particular concern for people with complex needs and there needs to be assurance that their needs will be met.

• Properties will be leased to service providers, but who will retain ownership of these? How will the conflict of interest be managed of a service provider being both an accommodation provider and a support provider?

• Will people with disability or their representatives be involved in the first phase of the EOI selection process?

• Who will provide independent oversight of the transfer process? Where will people with disability and their families receive independent information from during this process?

CID will continue to review the EOI documents and process and provide a more detailed report shortly.

CID would ike to hear from you - what are your thoughts? Are you happy with this process? Do you have any concerns?

• Contact details for NSW Council for Intellectual Disability

Arts news

Accessible Arts Newsletter April 2016
Among the news in this months issue of this excellent arts resource (you can subscribe for free online delivery via email):

Maitland Arts: accessible and inclusive free forumOctopod - free forum on 9 May that will bring together the arts and disability communities of Maitland to discuss access and inclusion in the arts within the context of the National Disability Insurance Scheme (NDIS). Bookings close 2 May 2016.Monday 9 May 2016 - Maitland Regional Art Gallery, Maitland 

Welcome to Wagga Wagga’s first Supported Studio, The Art FactoryThis year marks a big achievement for the Riverina creative community, in the establishment of Wagga Wagga’s first supported studio. There is a strong supported studio movement both nationally and internationally, and the creation of the Art Factory links our regional location to a bigger international conversation around arts and disability ...

Murmuration - integrated performance company
Check out all of the ways in which you can try out workshops with Murmuration:Murmuration 2016 workshops are kicking off on 3 May 2016. 

Led by industry professionals, you will develop skills in devised dance and theatre methods, activate new forms of artistic expression, work in a diverse creative environment and have a whole lot of fun doing so. We know there a lot of people out there that are afraid of commitment, so we have made 3 different ways to attend.

Who: Age 13+ to Adults | Beginners to Advanced
When: Tuesday nights | 6:00-7:30pm
Where: Gumbramorra Hall, Addison Road Community Centre, Marrickville

• And follow the Murmuration Facebook page to see what is happening, who is involved, and how you can join them.

Art guided by a love of dogs

Ben Cameron, Star Weekly, 25 April 2016
A Sydenham artist’s love of dogs and art have combined to re-imagine an iconic charity figure that will be displayed at the state library from this Wednesday.

Caroline Sant, who has a mild intellectual disability and Down syndrome, has completed an “incredible piece of art” for a Guide Dogs Victoria (GDV) Recollections exhibition ...

A Training Ground for Untrained Artists
Nathaniel Rich, New York Times, 16 December 2015
An Oakland nonprofit has a startling track record for helping developmentally disabled adults
become prolific — and profitable — artists ... 

... Facebook’s acquisition is the latest but not nearly the most impressive of a recent series of market successes for Creative Growth, which was founded in Berkeley in 1974 and has since relocated to a former auto-repair shop in downtown Oakland. Creative Growth has capitalized on the surging interest for work by self-trained artists ...

Some links to some big ideas on education ...

Opportunity and High Expectations

Tammy Day, TEDx Vanderbilt University, 22 December 2016

College usually provides young adults with pivotal experiences and opportunities that profoundly impact the building of their personal belief systems and ultimately the direction of their lives. All of these experiences are done alongside and with peers. Students share experiences with friends as they continue to find their own identities ...

Supporting peer connection in the inclusive class - practical tips for teachers (No.2)
Catia Malaquias and Robert Jackson, Starting with Julius, 23 April 2016
Teachers readily recognise the academic goals of inclusive education – and accordingly the need to apply differentiated instruction and universal design to teach a diverse classroom including students with disability. However, the life-long social and independence benefits of inclusive education are equally important but are sometimes overlooked ...

Why the latest research shows heads should give teaching assistants space to do their jobs

Jonathan Sharples, Schoolsweek (UK), 2 March 2016

The Education Endowment Foundation has released its latest research on new tools for teaching assistants and called for them to be used more effectively in schools. Here, senior researcher Jonathan Sharples explains why the research is significant ...

Los Angeles’ bold move to reform special education

John Tulenko, PBS Newshour (US), 23 February 2016Public schools in Los Angeles have experienced rapid change in the last decade, and graduation rates for the city’s 80,000 special needs students have nearly doubled since 2003. But greater transitions lie ahead: the district plans to transfer these students from special education centers to neighborhood schools ...

International award for Canadian inclusive education policy

Catia Malaquias, Starting with Julius, 21 February 2016
February is national inclusive education month in Canada. So it was good timing when earlier this month the Canadian provincial Government of New Brunswick received, from a field of over 100 countries, the prestigious 2016 Zero Project Award for Innovative Policy – for its Policy 322 on inclusive education. The Zero Project is a global initiative working for zero barriers for people with disability, with reference to the United Nations Convention on the Rights of Persons with Disabilities ...

High School General Education Inclusion Matters

Anna Stewart, Esme

... So why does it matter that Miranda is included in many typical high school experiences?

It matters because Miranda has dreams. She wants to live independently. She wants to work in the recycling/environmental field. She wants to swim at the local recreation center. She wants to be fully included in the community as an adult, and she knows what that looks and feels like since she is fully included in school ...

Effectively teaching mathematics to students with Down syndrome
Jo Earp, Teacher, 27 April 2016
Including students with Down syndrome in mainstream mathematics lessons in the primary years is achievable, but specific and ongoing professional learning for teachers is vital ...

Research news and commentary #4 for 2016

Lines of Inquiry, Edition 12, March 2016
Welcome to the latest edition of Lines of Inquiry, the newsletter of NDS’s Centre for Applied Disability Research (CADR).

Study shows students with, without disabilities recognize benefits of inclusive schools
School of Education, University of Kansas, 29 March 2016
In the debate about how to improve U.S. schools, there's often a missing voice among the researchers, scholars, policy makers, administrators and parents — and that's the perspective of the students themselves.

A new study co-authored and conducted by University of Kansas researchers found that students attending inclusive schools — that is, schools in which students with and without disabilities learn together — recognize the value of inclusion and being part of an inclusive learning community ...
How a system of ropes and pulleys may change the lives of babies with Down syndrome
Erin Canty, Upworthy, 30 March 2016
... thanks to an innovative research project, Grace will get to interact with and explore her world like never before ...

Ground-breaking New Scientific Publication on anti-Abeta Vaccine in Preclinical Model of Down Syndrome

Michael Harpold, Lumind, April 6, 2016
AC Immune announced the publication of a ground-breaking scientific study on an anti-A-beta vaccine potentially signaling a way to treat cognitive deficits in people with Down syndrome (Ds). The study, entitled An anti-Abeta-Amyloid Vaccine for Treating Cognitive Deficits in a Mouse Model of Down Syndrome, was published in the scientific journal PLOS ONE ...

$1M Awarded for Crnic Institute Research Grants and Three New Sie Center Clinics

Global Down Syndrome Foundation, 18 March 2016
Global Down Syndrome Foundation kicked off the weekend of World Down Syndrome Day by announcing $1M in funding for eleven new studies at Crnic Institute for Down Syndrome, and three new clinics at the Anna and John J. Sie Center for Down Syndrome inside Children’s Hospital Colorado.

“One cannot overemphasize the importance of the diversity in this research,” said Dr. Tom Blumenthal, Executive Director at the Crnic Institute. “The potential findings on the horizon from this research, made possible by funding from Global, may play a role in significant discoveries leading to an enhanced quality of life for those with Down syndrome that could possible benefit the typical population as well.”

Study estimates number of births and terminations with Down syndrome in Massachusetts
Massachusetts General Hospital, 14 April 2016

A multi-institutional research team has estimated for the first time the number of children born with Down syndrome each year in Massachusetts over the past century, along with the numbers of pregnancies of a child with Down syndrome lost to either termination or miscarriage ...

• Click here for information on an opportunity to participate in research into Key Word Sign training, at the University of Sydney

Reviews of 'Sing Fox to Me'

Following on from Sarah Kanake's recent article in the The Conversation (listed in our 'Weekend reading and viewing' post here), here is a selection of reviews of her novel, Sing Fox to Me:

Sydney Morning Herald /The Age, 8 April 2016 

The Saturday Paper, 3 March 2016

The Weekly Times, 4 March 2016 (reviewer Sue Wallace refers to an earlier Australian adult novel with a protagonist who has Down syndrome - Peter Rix's Water Under Water was published in 2011)

Whispering Gums, 22 April 2016, and a follow-up article  Sarah Kanake and Down syndrome in Literature, 24 April 2016

NSW swimmers in Team Australia: Trisome Games 2016

Congratulations to Daniel Rumsey and James Lawrence, the NSW representatives on Team Australia for the Trisome Games in Florence in July 2016. Down Syndrome Swimming Australia is campaigning for funds to help them get there, and the local press is supporting both young men with publicity:

Rumsey to represent Australia

Lauren Strode, Southern Highland News, 9 April 2016
Daniel Rumsey, one of Australia's top swimmers, will again represent his country later this year. The Highlands resident has been selected to compete in his sixth Down Syndrome World Swimming Championships which will be held in Florence in July.

Daniel's selection was a result of the success he enjoyed at last year's Down Syndrome Swimming Australia's National Championships ...

Italy beckons for swimmer
Hornsby and Upper North Shore Advocate, 7 April 2016, p 60 (back page)

Latest additions to 'other 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 

Click here for flyer as .pdf

Ruckus Ensemble - Life at city speed is never easy…for some it is almost impossible. How might you navigate our modern culture when you are unable to process information like most around you? How do you learn to adapt? Could tuning into other people who share a similar nature hold the clues? Does nature itself show you the way? Perhaps the answers are buried in the sands of southern Cambodia? Or scattered in the stars above?  Details of venue, performances and cast, links to online booking.

25 - 28 May 2016 - Erskinville

Weekend reading and viewing: 23 - 24 April 2016

The Down Syndrome Memo

David M Perry, How Did We Get Into This Mess? 17 April 2016
... I'd like the mothers (with whom I've discussed this on Facebook), as they move into this highly public phase of talking about Down syndrome, to be deeply conscious about how their "function-based" claims of value for Delaney exclude less functional people. I know it's unintentional, but the exclusion happens anyway ...

• Moxie: Let Down Syndrome Define You, Meriah Nichols, 17 April 2016

The Special Needs Island
Ellen Stumbo, 18 April 2016
... I confess at times I’ve fantasized about this make-belief island. The place where nobody stares when your child is having a sensory overload or where an IEP is not a fight. The blissful place where all your friends get it because they live it too. The island where you know you are not alone.From talking to special needs parents, I often hear they feel isolated. And while the idea of the island is indeed very appealing when you’re having a hard day and it feels as if nobody gets it, more than anything, I want people to see us ...

My daughter who has Down Syndrome is perfect

Danielle Colley, Australian Women's Weekly, 13 April 2016
Often a Down Syndrome diagnosis is viewed as negative, but one family has found it was anything but ...

High-Functioning Teachers Needed

Kari Wagner-Peck, A Typical Son, 15 April 2016

... “Okay, listen up, “high-function” and “low-function” is crap. That’s something The Man– you look old enough to remember The Man, am I correct?”

She nodded: “Yes.”

“Okay, so, The Man, says we’re not going to invest our time in teaching certain people so we will come up with some crappy way to absolve ourselves and blame the student. Hence: high or low functioning.” ...

Friday essay: on telling the stories of characters with Down syndrome 
Sarah Kanake, The Conversation, 22 April 2016
In 2014 I was asked, by my then university, to present in a jovial end of year debate. My partner, brother and a few of my close friends came to watch. The auditorium was packed. There were university bigwigs on both teams. I was pretty nervous. It went well, although many of the debaters thought they were presenting in a real debate and the rest (myself included) had only prepared jokes ...

• Sing Fox to Me is published by Affirm Press, and is available in print or as an eBook.

Adorable little dude
Geoff Lewis, Parent to Parent (NZ) March 2016
... 'I wanted everything to go away or the world to stop while I worked out what to do, who to tell and how to tell people. I didn't want people to be put on the spot of they congratulated me or say 'Oh no'; should they come and visit, what would they say to my kids?' ...

Blog #141 ~ Managing Stress as a Special Needs Parent

Down Syndrome with a Slice of Autism, 11 April 2016

... You see we don’t fit in to either the Down syndrome support groups or the autism groups. But at this retreat, we all can openly discuss the unique problems of raising a child with a dual diagnosis of Down syndrome and autism, in addition to behaviors associated with ADD,ADHD and more ...

Summary of dates, location for seminars with Dr Dennis McGuire

Summary of dates and venues for Dr Dennis McGuire's speaking tour in May, to give you an overview of the opportunities available:

Newcastle

Saturday 7 May

Menatal Wellness and Healthy Living for Adults with Down Syndrome

Families, carers, professionals

• Flyer
• Register online

Sydney

Monday 9 May

Getting Strong, Living Healthy

Adults with Down syndrome (accompanied by a support person)

• Flyer
• Register online

Sydney

Tuesday 10 May

Promoting strengths and mental wellbeing in siblings with Down syndrome
Siblings

• Flyer
• Register online

Sydney

Friday 13 May

Promoting strengths and mental well being in Adults with Down Syndrome: Lessons learned from the Adult Down Syndrome Center, Chicago

Professionals

• Flyer
• Register online

Sydney

Saturday 14 May

Promoting strengths and mental well being in Adults with Down Syndrome: Lessons learned from the Adult Down Syndrome Center, Chicago

Families, carers (support workers can attend with family at a discounted fee)

• Flyer
• Register online

Key Word Sign workshop for research: University of Sydney

Speech pathology researchers at the University of Sydney are investigating the impact of Key Word Sign training. They are calling for volunteers to participate in a Key Word Sign workshop, free of charge, where you will learn a vocabulary of signs that you can use to communicate  with someone with a disability.

Training workshops for parents of children with Down syndrome will be offered in person or via the internet. You might be able to participate in this study if you have

• a child with Down syndrome aged between 18 and 42 months
• English is your first language
• you have not attended a KWS workshop before
• y0u have internet access

Contact the researchers for more information:

Dr Andy Smidt   andy.smidt@sydney.edu.au 
Aylin Huzmeli    ahuzz8561@uni.sydney.edu.au
Elsie Chang        echa7982@uni.sydney.edu.au

An invitation for adults with Down syndrome: 'Getting Strong, Living Healthy' workshop

Promoting Strengths and Adaptive Resources in Adults with Down Syndrome

Dennis McGuire helped set up the Adult Down Syndrome Clinic in Chicago, USA. 

Since 1992 he has worked with over 6000 people with Down syndrome and their families.

He helps people with Down syndrome stay well and live a good life.

Dennis McGuire is visiting Sydney to talk about how people with Down syndrome can keep mentally well.

He also talks about how to be and stay healthy as you get older.

If you are a person with Down syndrome you can meet Dennis McGuire and hear him share his experience and knowledge.

When: Monday 9th May 2016
Time: 6:00pm – 7:30pm (Tea and Coffee on arrival)
Where: SMC Conference and Function Centre, 66 Goulburn St, Sydney 
How much: $66 (includes you and a parent/carer)
Who: Any adult with Down syndrome can come but you must have a support person with you.

Book online or call the Down Syndrome NSW office on 02 9841 4444 to get your place.

PS - Have you got a brother or sister?

Dennis has a workshop for them too. It's on the next day. Have a look here.

From the inside ...

Disability rights and inclusion of people with all kinds of disabilities in every aspect of their own individual lives and community life continue to evolve.

Parents, families and carers have often had the loudest voice as disability movements emerged, and now we are hearing much more from people with disabilities themselves.

We all need to pay attention, even (especially) if what they are saying is that we have been getting it wrong, or that we can at least do a whole lot better. People with intellectual disabilities might struggle more than most to have their voices heard, but that too is emerging, and there is much to learn from other disabled people (as they often tell us they wish to be called, notwithstanding that we have previously often demanded, and continue to demand 'person first' language on their behalf). These are just a few examples worth attending to:

Basic Myths about Disability I Can’t Believe We Still Have to Debunk

Sarah Blahovec, Huffington Post (blog), 4 April 2016

To be honest, I was really hoping that what I’m about to write was common knowledge by now. I really wish that society in general understood disability better, but in light of a number of concerning articles recently, from a USA Today article about people “faking” disability during travel, to a New York Times Magazine article about parents stunting the growth of disabled children through estrogen treatments, it seems necessary to counter the basic inaccurate beliefs people have about disability and those who live with it ...

Choreography of Care
Alice Wong, Making Contact, 14 April 2016 (Audio 11m 33s)
Community Storytelling Fellow, Alice Wong asks, how do people with disabilities who rely on personal assistance negotiate their relationships with the people that assist them? And how does that inform their sense of independence or interdependence with others? ...

'Disabled': Just #SayTheWord
Barbara J King, (US) National Public Radio (NPR), 25 February 2016
... I noticed this posting on Facebook by Lawrence Carter-Long:

"If you 'see the person not the disability' you're only getting half the picture. Broaden your perspective. You might be surprised by everything you've missed. DISABLED. ‪#‎SayTheWord"

I understood intuitively the thought that many people with physical limitations wouldn't want to have this part of their lived experience erased by others. But admonitions that the term "disabled person" is inappropriate and disrespectful firmly stuck in my mind ...

I Don’t Have “Special” Needs…

JasonsConnection, 11 February 2016

I don’t have “special” needs. That might offend some, but it is the truth.

I am not denying that I need help or that I have a disability. But the needs I have are not “special,”—they’re needs everyone has. I want what most people want out of life. Relationships with people, meaningful use of my time, a position that earns me some form of respect, and so on ...
History Made Me Do It

Dave Hingsburger, Of Battered Aspect, 12 March 2016

... My decision, I believe, was looked at in the context of their lives, not in the context of mine.

I think this is why so many people don't get prejudice, they don't understand why a person might react to something that they see as a neutral because they've had the luxury of having lived a life in neutral ...

A Woman on A Bus
Dave Hingsburger, Of Battered Aspect, 13 march 2016
... I tried telling a couple of other people and both of them saw the conversation in a way that it hadn't been experienced. No matter how I tried to present the conversation as a conversation, the mention of the woman and her communication board, turned the conversation into an act of charity, an act of giving ...
Are your characters tragically disabled or magically disabled?

... Trope #1. The Tragically Disabled

You know this one. It goes all the way back to when disabilities started being represented in literature. And that’s a long time. Like, ever since there has been literature ...

... Trope #2. The Magically Disabled

Moving on to trope #2, the “magically disabled.” This trope is a common one in SF/Fantasy books. Here, a character develops a disability but magically (or scientifically) overcomes the disability to the point where he or she isn’t disabled any more ...
4 Things You Should Ask Yourself Before Sharing Inspiration Porn On Social Media
Kimmie Jones, Ravishly, 18 April 2016

Facebook posts can easily shape-shift into 21st​-century sideshows.

Spring is here, meaning prom season is upon us. As much as my 33-year-old self loves the vicarious joy in seeing what the kids are into — which is decidedly not French twists and chokers anymore — I shudder at the thought that my news feed will soon be inundated with a certain kind of prom-posal that stresses me out ...

Health advocacy: NSW CID

NSW CID advocates off to
Canberra this week

Dennis McGuire's speaking tour  (Sydney, Newcastle) next month is an indication of the importance of knowledge about and attention to mental health for people with Down syndrome, and the interaction of mental and physical health.

The NSW Council for Intellectual Disability (our State peak body on the interests of people with intellectual disability) has long been a strong and active advocate for all aspects of health care for people with intellectual disability. Representatives are currently in Canberra for two days of meetings where they are seeking a commitment that:

All major Commonwealth physical and mental health initiatives will include specific consideration of what needs to happen to make them work for people with intellectual disability.

NSW CID is asking that supporters of these efforts share their Facebook status dated 19 April 2016 to spread awareness of the need for their health advocacy at Federal level.

Visit the NSW CID website to see what else they do to secure and promote good healthcare for people with intellectual disability, under the 'What We Do' tab.

Newcastle seminar now on Dennis McGuire's tour schedule: 7th May

Down Syndrome NSW is delighted to announce that Dennis McGuire PhD, internationally renowned behavioural expert, will be in Newcastle on Saturday 7 May to deliver a seminar on Mental Wellness and Healthy Living for People with Down Syndrome.

• Click here to download the flyer
• Register online here

You may already be aware of Dennis’s work and long time commitment to people with Down syndrome.  Mental Wellness in Adults with Down Syndrome; A Guide to Emotional and Behavioural Strengths and Challenges, which he co-wrote, has for many years been the most borrowed item in the DS NSW library.  In 1992 Dennis co-founded the Adult Down Syndrome Clinic of Chicago, serving as its Director of Psychosocial Services for many years before taking up the position of Senior Consultant, Global Down Syndrome Foundation, Denver.

The Newcastle seminar will be invaluable for families and carers of people with Down syndrome as well as professionals with an interest in intellectual disability.  So please feel free share this information with any therapists, GPs or other health professionals.

Dennis will cover topics such as ...

• promoting strengths and creative potential,
• behavioural characteristics of people with DS involving social skills,
• promoting healthy self-esteem and
• creating environments that support mental wellness and good health.

This is a unique opportunity to hear first-hand the information and practical knowledge gained from over 30 years of practice to best support mental wellness and health living for all people with Down syndrome. We hope you can join us.

When:    SATURDAY 7 MAY 2016

Time:     9am – 1pm

Where:  Wallsend Diggers, 5 Tyrrell Street, Wallsend

Cost:      $99 DS NSW Members / $139 non-members 

• Register online here

Please note - the previously advertised Melbourne seminar on this date has been cancelled.

Media award

CHILD Magazines won a number of international media awards at the Parenting Media Association Awards (US/Canada/Australia) last weekend, including:

GOLD AWARD:  Front Cover – May 2015 issue, CHILD

Congratulations to Karen Miles and the team at CHILD Magazines, and to cover model, Isabella.

You might like to re-visit the CHILD Magazine blog post about the photo shoot, and the article Danceability, from the May 2015 issue.

On employment ...

Disabled employment targets set for NSW justice ministry

Kirsty Needham, Sydney Morning Herald, 18 April 2016

... The justice department will become the first NSW government agency to introduce employment targets for disabled workers, in a government-wide push to reverse a fall in employment rates. A plummet in the number of disabled people working for the NSW government had sparked calls last year for targets modelled on gender targets ...

Gaza's first teacher with Down's Syndrome thrives in the classroom
Albawaba, 11 April 2016

Hiba Al Sharfa has become the Gaza Strip’s first teacher with Down’s Syndrome, after a lifelong effort to achieve the dream.

Al Sharfa teaches at Right to Live, an NGO based in the Gaza Strip that supports and cares for children with Down’s Syndrome ...

VATTA employment committee
Canadian Down Syndrome Society

• Using Our Voice
• Being Professional At Work
• From Passion to Paycheque
• What it means to be flexible at your job

Disability conference highlights costs of exclusion and opportunities for change
Georgia Cranko, The Guardian, 18 February 2016
Disabled people are mostly ignored by Australian businesses but Melbourne conference highlights five ways to create social change and employ more people ... The program was headlined by Charlotte McClain-Nhlapo, disability advisor to the World Bank Group, while other sessions were led by prominent spokespeople, including Ron McCallum, Graeme Innes and Rosemary Kayess who all have lived experience of disability ...

Like every mother, I want my daughter to have opportunities

Becky Bisbee, Seattle Times, 22 March 2016
Expanding job opportunities for people with disabilities means creating taxpayers who will lessen the need for public assistance. Employers get capable workers who take pride in their work ...

Register now for the ride of the year

Registrations are now open for Scrapheap Adventure Ride 2016

Visit  the Scrapheap Adventure Ride 2016 website here and click on 'Join The Ride'

Weekend reading and viewing: 16 - 17 April 2016

The Good, The Needed, The Awesome – A #WDSD16 Wrap Up

Mardra Sikora, Grown Ups and Downs, 10 April 2016

For you other geeks out there, I will now share about our #WDSD experience. For those of you who stick with me, there is an extra special treat at the end, the nugget Marcus shared with me at the end of the day ...

Dads support and inspire each other
Geoff Lewis, Parent to Parent (NZ) March 2016
For Keith Maynard, training as a Support Parent for parent to parent has taught him not only how to work with other people, but also a lot about himself ...

Global Down Syndrome Foundation Announces Plan to Publish Medical Care Guidelines for Adults with Down Syndrome

Global Down Syndrome Foundation, 8 March 2016

... The most recent guidelines for adults with Down syndrome were published in 2001 and the fifteen years since have been marked with many advancements in the areas of medical care and research surrounding Down syndrome. Most notably, the life expectancy for someone born with Down syndrome has more than doubled since 1983, from 25 years to 60 years today. With this dramatic advancement, the Down syndrome community faces new challenges including dementia and Alzheimer’s disease ... 

The Long Reach of Inclusive Education

Todd Grindal, Huffington Post, 1 April 2016

... Throughout the World Down Syndrome Day event, people with Down syndrome discussed how being included in their families, schools, and communities helped them build rich and fulfilling lives ... The reach of inclusive education is long — it both supports the development of skills and abilities for people with Down syndrome and contributes to creating an environment where they can use those skills to fully participate in their communities.

The Secret of Liam
2016 Disability Film Challenge, 5 April 2016

Fostering Friendships

InCharge, 10 February 2014
At once heavily sought after and frustratingly elusive, friendships are nonetheless vital for a full and meaningful life. Here we discuss some useful pointers to keep in mind ...

Life After School Program: Nepean/Blue Mountains

Northcott is launching a new program to help young people with disabilities in the Nepean Blue Mountains area, starting in May:

The Life After School program will help young people with disabilities aged 15 – 18 navigate the complex world of work, relationships and out of home living as they transition out of the school system.

The program will deliver a series of workshops to teach young people important life skills such as how to land their first job, manage a budget, learn to cook, deal with their sexuality and interpersonal relationships as well as tackle mental health issues such as anxiety ...

• Further information from Northcott here

News and commentary from the broader disability community

The discriminatory reason doctors won’t give a baby the heart she needs
Timothy P. Shriver, The Washington Post, 8 April 2016
Lily Parra is 4 months old and needs a heart. But she has been told she can’t have one.

Not because she’s too sick but because of deep-seated discrimination against those who have — or might have — a developmental disability. An operation that could give Lily a shot at life, and hope to her family, is being denied apparently not because of Lily’s medical condition but because of who she may become ...

Anger, frustration over government silence on disability abuse royal commission
Judith Ireland, Sydney Morning Herald, 12 April 2016

Disability advocates have slammed the federal government's "astounding silence" over a landmark Senate report, which called for a royal commission into disability abuse more than four months ago ...

Bridging the Digital Divide: Technology and Accessibility for People with Disability

Lisa Annese. ProBono News, 5 April 2015
We don’t need the Federal Government’s recent Innovation Statement that said advances in technology are transforming just about every part of our lives, from the way we work to the way we communicate and access services. It’s obvious and we are living it daily ...

When Accessibility gets Labeled Wasteful

Kim Sauder, Medium - Disability Stories, 4 March 2016
So there’s a debate going on, on Twitter right now between disabled people and people who either claim to care about the environment and or just want to complain about “lazy people” ...

‘What are you thinking?’: Provocative campaign targets disability stigma

Chris Davis, ABC27 News, 6 April 2016
Paper thought bubbles in Harrisburg aim to get people thinking about the way they think about those with disabilities ...

Why Working With Special Populations Doesn't Make Me A Good Person:What you're missing from the bigger picture

Katharine J Smith, The Odessey, 5 April 2016 

"What do you do?” might be one of my least favorite questions. Let me tell you why. I am currently a Registered Behavior Technician at a wonderful program (MAP) nestled in the heart of North Carolina. Usually when I tell someone what I do, their response is either an uncertain nod or a plain look of confusion. At that time, I break it down by saying, “Basically, I work with children who have autism.” Now, more times than not, the response I receive is along the lines of, “Wow, that’s so amazing of you” or my personal favorite, “Good for you. I could NEVER do that.”

My Perspective 2016

Photographers who have Down syndrome, the UK Down's Syndrome Association's annual photography competition, My Perspective is open until 22nd April:

• Entry details here

Link for Insight: Sex and Disability at SBS 'On Demand'

If you missed last night's episode of Insight, you can watch it online via SBS On Demand:

Sex And Disability
Insight: Season 2016 Episode 10
How do you negotiate sex with a serious disability? What are the physical, intellectual, financial, legal and emotional barriers? How do you make it work, particularly with disabled teenagers? How can you properly express your sexuality? This week, Insight is look at two issues that are definitely not mutually exclusive: sex and disability. 
Hosted by award-winning journalist Jenny Brockie. Tuesday 12th April, 8:30pm SBS (An SBS Production) 

Latest additions to the 'other 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 

The unconference - a participant driven gathering

Jeder Institute - what is emerging under the NDIS? Hear and share stories of the lived experience from people with disabilities and their supporters.

An ‘Unconference’ is a participant-driven gathering.
Delegates actively contribute to the agenda sharing lots of dynamic open discussions.
Rather than a single speaker at the front of the room presenting PowerPoint slides, there will be ‘Key Agitators’ facilitating conversations and debate. (Jeder Institute)

16 - 17 May 2016 - Burwood (Sydney)

Australia’s Disability Employment Conference
Disability Employment Australia - conference for managers, aspiring managers, practitioners, and academics working in or with the Disability Employment Services sector, anyone with an interest in employment assistance for people with disability.
10 - 11 August of 2016 - Melbourne

Casting call

Disability and sexuality

In the lead-up to tonight's episode of Insight, on Sex and Disability, SBS TV (8.30pm), SBS News published this article about the Rainbow Bridge Social Club:

Coming out on being gay with a disability
Madeleine King, SBS News, 8 April 2016
When Charitha de Silva was 15 years-old, he came to is adoptive mother Mary McMahon to tell her, quite simply, the he was gay and wanted a boyfriend.  It wasn't much of a surprise ...

Mental Wellness and Healthy Living seminars: book now for Dennis McGuire's 2016 tour

Many of you will be familiar with the work of Dennis McGuire through the wonderful books Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome. Dennis co-founded the Adult Down Syndrome Centre in Chicago in 1992 as Director of Psychosocial Services. His work with more than 5000 adults with DS over that time has provided a wealth of insight and understanding into the thoughts and behaviour of people with Down syndrome and how to best support them to live a good life. Dennis McGuire will be visiting Australia for the first time in May this year for a series of Mental Wellness and Healthy Living seminars for families, carers and support workers.  Melbourne: May 6th (Professionals) and May 7th (Families and Carers) Pullman Albert Park  65 Queens Rd, Albert Park Sydney: May 13th (Professionals) and May 14th (Families and Carers) SMC Conference and Function Centre  66 Goulbourn St, Sydney Take advantage of this unique opportunity and share this information with your networks. Further information about the program and to online registration or call the Down Syndrome NSW office on 02 9841 4444.

Weekend reading and viewing: 9 - 10 April 2016

Employable Me - Zena and Employable Me - Matthew
BBC, April 2016
Following up on BB2's Employable Me, BBC Three have shared some short films about people with Down's syndrome who are job-hunting. 

Designing Glasses That Fit Individuals With Down Syndrome

Heather Hansom, Smithsonian Magazine, 6 April 2-16

Optician Maria Dellapina started Specs4Us when her daughter struggled to find a pair of glasses that wouldn't slip ...

An Open Letter to Medical Students: Down Syndrome, Paradox, and Medicine
George Estreich, AMA Journal of Ethics, April 2016,
If you’re reading this, you could be anyone—a bioethicist, a Facebook friend, an adult with Down syndrome—but the “you” I have in mind is a future clinician. As a writer and parent of someone with Down syndrome, my aim is to share questions and insights that may be useful to you. Clinical encounters involving people with intellectual disabilities can be both charged and complex; understanding the complexities may help improve the encounters, by helping clinicians see the patient more clearly ...

How to build an inclusive culture: understanding Down syndrome through the lens of diversity

Imprevisti, 31 March 2016Speech delivered by Martina Fuga, member of the board of Coordown at the 2016 World Down Syndrome Day Conference at the United Nations, New York, 21 March 2016.

My Banished Brother

Lisa Reswick, New York Times blogs (Well), 1 April 2016

... I was at work in New York City when my phone rang. A voice said, “This is Wanda from your brother Jimmy’s group home.” Tears came instantly, although I’d never heard of her and had no idea why she was calling ...

Sex and disability: SBS Insight, Tuesday 12 April

Sex for both people with physical and intellectual disability will be discussed in this episode of Insight:

How do you negotiate sex with a serious disability?

Tuesday, April 12, 2016 - 20:30
SBS One

Imagine - you’ve been married to your partner for 25 years. You live with them, love them, are sexually attracted to them, but physical intimacy? Almost impossible. 

This is the reality for David and Jenni Heckendorf, who both have profound cerebral palsy that greatly limits their mobility. In order to have sex, they must use the services of a sex worker; a process of extreme trust, vulnerability and financial cost.
They lobbied to use their NDIS funding to access their sex worker, but others are restricted by state laws and regulations around sex work. 

Rachel Wotton is one such sex worker, who works with clients with physical and intellectual disabilities.

What if your child had an intellectual disability? How do you teach them about all the nuances of sex and sexuality: consent, attraction, pleasure, emotion, consequences?
Mary McMahon has helped her gay son negotiate porn. Jarrod McGrath teaches sex-ed classes for children with intellectual disabilities. 

And what happens, if and when kids come along? What is the most ethical course of action? 

This week, Insight is looking at two issues that are definitely not mutually exclusive: sex and disability.

Book review: David M. Perry on 'The Secret Life of Stories'

David M. Perry is a disability rights journalist and associate professor of history at Dominican University. Michael Bérubé is a professor of literature at Pennsylvania State University, where he teaches American literature, disability studies, and cultural studies. Both are fathers of sons with Down syndrome.

Narrative Deployments of Disability
Los Angeles Review of Books, 6 April 2016

... Bérubé has organized his work into three main chapters: motive, time, and self-awareness. The first chapter examines (borrowing theorist Ato Quayson’s term) the ways intellectual disability serves as the “ethical core” of narratives, starting with Harry Potter. The great saga of the wizard world is not about intellectual disability, but all the action, Bérubé argues, ultimately stems from Albus Dumbledore’s reactions to his sister’s disability and disability-related death. Here, then, lies a perfect example of Bérubé’s argument that disability infuses literary production in ways that a reader, indeed, an author, might miss. Intellectual disability functions as motive, even if none of the main characters are disabled ...

• Another review of The Secret Life of Stories

Grappling with Intellectual Disability - Michael Bérubé’s The Secret Life of Stories, Manuel Betancourt,  Slant Magazine, 9 February 2016

• Previous posts referencing Michael Bérubé's work are here and here

• Humans, Superheroes, Mutants, and People with Disabilities, Michael Bérubé, TEDx PSU 2010 (Video 13m 16s)

News and commentary on the NDIS (47)

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.

NDIS eNewsletter, March 2016

Video: What is the Intellectual Disability Reference Group?
NDIS eNewsletter, March 2016
The Group is chaired by IAC Principal Member, Rhonda Galbally. Last year, the Independent Advisory Council (IAC) established an Intellectual Disability Reference Group to advise the Council on the effectiveness of the Scheme design and how the Agency can engage and better connect with people with intellectual disability to help them achieve their goals.

We joined the Group at their March meeting to provide you with a snapshot of their important work, and learn how the IAC is listening to ideas and feedback from people with intellectual disability, carers, advocates, providers and academics about how the Scheme can better support the inclusion of people with intellectual disability.

Group members interviewed for the video include NSW Council for Intellectual Disability chairperson Michael Sullivan, Adelaide People First advocacy group founder Silvana Gant, senior advocate Jim Simpson, and NDIA Service Delivery General Manager Liz Cairns.

The March meeting focused on how the Scheme can best support people with intellectual disability to make decisions about their lives and what they need to achieve their goals.

Download transcript of the video here (DOCX, 13KB)

Information, Linkages and Capacity Building Commissioning Framework

NSW Council on Intellectual Disability (blog), 6 April 2016
CID has been having lots of conversations and engaging with many people about the NDIS Information Linkages and Capacity Building Framework which is currently in consultation. Submissions on the framework can be made until 22 April.

Here are some of our initial thoughts and questions on the framework. 

CID will continue our research and prepare a final submission but we wanted to share some of the ideas and themes that we are developing ...
Financial Models for NDIS Housing – NFP ReportLina Caneva, Probono News, 31 March 2016
Using the NDIS to address the large housing shortage for people with disability will depend on the ability of housing providers to access significant amounts of capital from the private financial market, according to a new analysis ...

Giving the NDIS Clickability

Ellie Cooper, Probono Australia News, 23 March 2016
Two social workers concerned about the lack of information on NDIS services, and their quality, have created an online directory of ratings and reviews, writes Ellie Cooper in this week’s Spotlight on Social Enterprise ...

Indepent advisory Council (IAC) advice on reasonable and necessary support across the lifespan: An ordinary life for people with disabilityIndependent Advisory Council, NDIS, March 2016
... (This) paper takes an ‘ordinary life’ in 21st century multicultural Australia as its starting point because people with disability share the ordinary aspirations of their peers without disability but need reasonable and necessary NDIS support to achieve them. The ordinary life provides clues as to how these aspirations would typically be met providing a useful benchmark to guide understanding of reasonable and necessary support ...

• Comment on NDIS and Me Facebook Group, 28 March 2016:  It's very long, but you can click on the bits you might want to read from the link here. Given that over 60% of NDIS participants have an intellectual disability, I'm hoping there are Plain English and Easy Read versions being developed.

Bringing the Good Life to Life (website)
Community Resource Unit (Qld), launched March 2016

Community Resource Unit Inc. is pleased to announce the launch of a new website we have developed as part of our NDIS Participant Readiness program. This website has been created as a resource for people with disability and their supporters, both paid and unpaid.

Our idea was to create a website that explored what makes a Good Life and some of the things that can be done to create and sustain this for a person with disability ...