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 ...