News and commentary on the NDIS (48)

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:

How to nominate NDIS as an issue of interest on Vote Compass

NDIS and Me, 14 May 2016
Did you know that nothing to do with the NDIS even rates a mention in any (Federal Election 2016) Polls so far?

There's one way to help the NDIS get attention and discussion - enter it into your Vote Compass.

After answering the Vote Compass questions, you will come to a question where you can type in the issue which is the most important to you. This is where you would type in NDIS.

Australia Votes 2016 - Vote Compass - ABC News
Vote Compass is an educational tool developed by political scientists designed to help you explore how you fit in Australia’s political landscape.


NDIS supporting close to 25,000 people with disability
National Disability Insurance Scheme, 6 May 2016

Close to 25,000 Australians with disability are now receiving the supports they need to live more independent lives, according to the latest quarterly report from the National Disability Insurance Agency (NDIA).

The report to the COAG Disability Reform Council for the March Quarter 2016, released today, shows the Scheme remains on time and on budget, having delivered $1.96 billion worth of funded support to NDIS participants.

NDIA Chief Executive Officer, David Bowen said with less than two months until the NDIS begins to be rolled out across the country, the report showed the Scheme was well placed to welcome new participants from 1 July ...
NDIS April 2016 e-Newsletter

Disability Loop eNews Issue #14, 19 April 2016

NSW 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 ...

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

John Gilroy, Croakey, 29 April 2016

The National Disability Insurance Scheme (NDIS) may bring valuable opportunities for Aboriginal and Torres Strait Islander people with disabilities, but some important questions have arisen around accountability, according to Dr John Gilroy, from the Centre for Disability Research and Policy at The University of Sydney ...

ACT to reap economic benefits of NDIS, report finds

Alexandra Back, Canberra Times, 14 April 2016
The National Disability Insurance Scheme will create an "employment boom" in the ACT and add up to $367 million to the local economy, a report has found ...

5 Top Searched NDIS Services on CareNavigator.com.au

11 April 2016
March was an absolutely amazing month here at CareNavigator.com.au. In only our second month live and three months since we started this journey, it’s incredible to see thousands of people coming to find, review and recognise great NDIS care providers. We also passed more than 2300 provider services listed across Australia and look forward to that number continuing to grow with Queensland signing on to NDIS and major rollouts to more regions in 2016 ...

News and commentary from the broader disability community

Next Steps on Inclusion
Simon Duffy, Centre for Welfare Reform (UK), 2016

... The first step to inclusion is to leave behind tired prejudices. We don’t have to believe that clever people are better than other people. We don’t need to value one kind of beauty. We don’t need to keep chasing money and power. We can choose love, acceptance and diversity. These values may not be dominant - but they still exist deep within us - because we each know our own frailty, vulnerability and need for love and meaning ...

Choice and control: social care must not disable people with intellectual disabilities

Val 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 ...

Don’t Say Rainbows 

Sophie Trains, Respectfully Connected, 20 February 2015 

I am a rather quiet advocate. I don’t often get into debates and generally avoid conflict (in real and online life). I usually have a pacifist or diplomatic approach. However this doesn’t mean that I don’t hold strong opinions and sometimes I do get sucked into an argument when I just can’t ignore ableist or ignorant comments any longer ...

NFP Panel Sets its Sights on Collaboration

Lina Caneve, ProBono News Australia, 14 April 2016
A collaborative panel made up of eight Not for Profit peak bodies and supported by philanthropic funding is spearheading projects aimed at building capacity in the aging, disability and mental health sectors ...

Disability Representation and the Problem with “Inspiration Porn”

Keah Brown, The Toast, 14 April 2016
... Sometimes I feel guilty, cowering under beady eyes. I feel guilty for the desperate way in which I do desire to explain myself to complete strangers, and then I remember that I shouldn’t have to ...

Reporting on Disability with Sensitivity, not Sensationalism

Genevieve Belmaker, Nieman Reports, 30 March 2016

When people with disabilities are portrayed as only heroes or victims, it's harder to address the issues that affect them ...

... he came across a newswire story about a labor case involving a group of men with intellectual disabilities. The facts of the case: 32 men with disabilities, working for the same wage for 35 years, $240 million in damages. “What the heck are we talking about here?” Barry recalls thinking.

... Barry called the lawyer on the case to find out more—and also to ask about speaking with the men. The lawyer’s response was surprising: Not a single reporter had ever asked to speak with the men before ...

How the justice system fails people with disability - and how to fix it
Eileen Baldry, ABC Ockham's Razor, 18 April 2016
More than 30,000 Australians are imprisoned every year. Many have disabilities, many are Indigenous - and the system cannot cope ...

Weekend reading and viewing: 14 - 15 May 2016

Amy and Sarah Interview




What do you see?
Michelle Mahnke, 26 April 2016
... I sometimes wonder what my kid’s days are really like when she is away from me. Not as recorded in an IEP ...  Not filtered through someone else’s report. I want a chance to simply stand by and watch, undetected, as my child goes about her day. I want to see what my child with Down Syndrome sees. One day, I had that chance ...

Dear Special Needs Mama, I Celebrate You

Ellen Stumbo, 7 May 2016
Having a child with a disability can make life different from what other moms of typical children experience. On a day like Mother’s Day, while friends receive cards from their kids, breakfast in bed as a result of the loving attempt from little chefs, and homemade gifts, your heart yearns for the day you hear your child say the words, “I love you,” or a day with no medical complications, or to have someone come along your side and remind you that you are not alone ...

“What’s wrong with that boy?” 6 ways to talk to your kids about disabilities

Katy Epling, Huffington Post (blog) 11 May 2016
... I want to hug every curious child and every well-intentioned parent. I want them to know their questions are OK. Better than that, they are good. We should ask questions and start a dialogue instead of avoiding and allowing confusion and fear to grow ...

Next Steps on Inclusion
Simon Duffy, (UK) Centre for Welfare Reform, 2016
... The first step to inclusion is to leave behind tired prejudices. We don’t have to believe that clever people are better than other people. We don’t need to value one kind of beauty. We don’t need to keep chasing money and power. We can choose love, acceptance and diversity. These values may not be dominant - but they still exist deep within us - because we each know our own frailty, vulnerability and need for love and meaning ...

Have your say on a new integrated carer support service

From the Department of Social Services:

The Australian Government is developing an Integrated Plan for Carer Support Services to better support and sustain the work of unpaid carers.

The first stage of the Plan included design and implementation of Carer Gateway. Established in December 2015, Carer Gateway is a national website and contact centre that provides carers with practical information and support and helps them connect with local support services.

An important second stage of the Plan involves developing a new integrated carer support service system through a co-design process.

The purpose of the new service system is to deliver supports that reduce carer strain, increase carer well-being and support them to continue in their caring role.

A draft Service Concept was developed through research, co-design workshops with carers, and input from subject matter experts and the Carer Gateway Advisory Group.

The draft Service Concept sets out the types of services that could be delivered under a future service delivery model.

We want to hear your views on the draft Service Concept.

Swallowing difficulties: awareness and information

Yesterday (11 May) was the first Swallowing Awareness Day organised by Speech Pathology Australia.

Swallowing difficulties are common for people with intellectual disability, including those with Down syndrome of all ages. Assoc Prof Bronwyn Helmsley from the University of NSW has written about swallowing difficulties for the NSW Council for Intellectual Disability:

• It's a lot to swallow! Swallowing Difficulties
• Swallowing - 5 Facts for People with Intellectual Disability
• Swallowing Difficulty and People with Intellectual Disability

You can also listen to the articles from the link on the page.

Speech pathologists are one of the main health professionals working with people who have swallowing difficulties.

Swallowing difficulties are also called “dysphagia” (pronounced dis-fay-gia) as this means ‘disorder of swallowing’.

You can find out more about the awareness day here

'American Horror Story' star Jamie Brewer in Sydney

Actor Jamie Brewer will be visiting Sydney later this month for Bus Stop Films. During her visit there will be two opportunities to meet her and/or hear her speak:

Afternoon tea with Jamie Brewer - an invitation to Down Syndrome NSW members with Down syndrome

• The invitation to an afternoon tea at Annandale on Sunday 22nd May is published on the DS NSW Facebook page. The first 35 people to respond will have the opportunity to meet Jamie, a strong advocate for including people with Down syndrome in everything.
• Click on this link to secure your place.

Screen NSW, AFTRS and Bus Stop Films work together to make disability count on Australian screens

The Australian Film and Television School (AFTRS) and Screen NSW have joined with Bus Stop Films to foster pathways for people with disabilities to work in the Australian film and television industry.

Jamie Brewer, the American actress best known for her roles in the Emmy award winning hit TV series American Horror Story, will speak at a special Screen NSW and AFTRS event on May 25 to draw attention to the need for more diversity and inclusion in the screen industries. Jamie is an advocate for creating positive role models for people with disability, and in February 2015, became the first person with Down syndrome to walk the catwalk at New York Fashion Week.

The event An Evening with Jamie Brewer, to be hosted at AFTRS, with a keynote address by Screen NSW CEO Courtney Gibson, is designed to encourage more discussion amongst production companies, casting agents and the wider community on how the Australian film and television industry can best move forward in creating roles, both on and off screen, for people with a disability.

Screen NSW CEO Courtney Gibson said: “It’s time all of us in the screen sector focused on creating opportunities for under-represented groups, including disabled cast and crew, in order that a multiplicity of visions and voices are seen and heard. We'll have a stronger industry with richer content if we make it a priority.”

While in Sydney Jamie will also participate in an acting workshop for filmmaking students with disabilities being run by Bus Stop Films at Sydney Community College.

According to Genevieve Clay-Smith, co-founder of Bus Stop Films, a non-profit dedicated to facilitating a film school experience for students with disability, the Australian film and television industry has a long way to go in casting characters with a disability authentically. Jamie will star in the next Bus Stop Films production titled ‘Kill Off’, a new short film being made by with students with a disability, to be filmed in Wollongong.

“Australia is behind when it comes to authentic casting, we simply don't have high expectations of actors who have disabilities, we need to start challenging that, to look for ways to cast actors with disabilities in roles where the character shares the same disability. We also need to advocate for pathways for people with disabilities to get more involved in production.

“Jamie Brewer's presence in Australia will, I hope, shed light on the abilities of people with a disability to be involved in the film industry,” said Clay-Smith.

In the first season of American Horror Story: Murder House, Jamie portrayed Adelaide "Addie" Langdon, the daughter of the main antagonist, Constance Langdon, played by Jessica Lange; in the third season, American Horror Story: Coven, Jamie portrayed Nan, an enigmatic and clairvoyant witch, and in American Horror Story: Freak Show, she played opposite Neil Patrick Harris as Chester Creb's vision of his doll, Marjorie, come to life.

An Evening with Jamie Brewer
5.30pm, Wednesday 25th May
AFTRS - Building 130, The Entertainment Quarter, Moore Park

Resources

Australian Disability Clearing House on Education and Training (ADCET)
In order to facilitate successful outcomes and improve the educational experience for students with disability, ADCET provides information, advice and resources to Disability Practitioners, Teachers and Students on inclusive practices within the post-secondary education sector.

First and Then - a new app
May 9, 2016

A virtual visual support app to assist people with autism and communication challenges transition calmly at home, school and the community. It replaces the traditional visual supports that can be cumbersome, time consuming, costly to create and limited in function. 

The app is easy to use, with infinite options as personalised visuals can be selected from the camera roll, camera, google images and the apps photo library.

One of our members alerted us to this new app, and has trialled it with her adolescent son with Down syndrome and hearing impairment. The link in the title takes you to an introductory video. The website and links to downloads are here.

Step by Step Cook Book - for non-readers

The Step By Step Cook Book is a colourful and clearly arranged recipe book for young children and other non-readers, such as some people with intellectual disabilities, communication or cognitive impairments or autism spectrum disorder.  

It features twelve simple, healthy, tasty and fun recipes. It has coloured photos for every piece of equipment, ingredient and step of the recipe with simply written text accompanying each step.  

This volume features 'no-cook' recipes, so there is no need for a stove, oven or microwave, meaning the recipes are perfect to use in most 

Nominations open for the National Disability Awards

2016 National Disability Awards

In 2016 we celebrate the 10th anniversary of the National Disability Awards.

The Awards are the Australian Government’s main celebration of International Day of People with Disability, aiming to honour and recognise the outstanding achievements of individuals, teams and organisations that have improved the lives of Australians with disability and contributed to increased recognition of equality and human rights for all Australians.

This year, nominations are being sought across eight categories that align to the key priority areas for action under the National Disability Strategy - employers, community partnerships, inclusive community design, technology, education and training and justice and rights protection.

Nominations close 5PM AEST, Thursday 30 June 2016.

• All details and links to nomination forms

Final reminders on seminars, workshop 13th, 14th and 16th May

Last few days to book for Down Syndrome NSW events in the next week:

• Register now for Dennis McGuire's seminars on mental health, in Sydney

Friday 13th May - professionals 

Saturday 14th May - families 

• Register now for Hunter Valley 'Key Word Sign' workshop with Lisa Dodd

Monday 16th May: 10am - 12.30pm and 6.00pm - 8.30pm

Budget 2016 -2017 : further information, analysis and commentary

Federal Budget 2016 - what it means for carers

Carers Australia, 6 May 2016
Carers Australia has produced a document providing an overview of all those measures within the recent Federal Budget which may impact upon carers.

The Budget's effect on people with disabilities

2SER (radio) 4 May 2016 (audio 3m 43s)

With the handing down of last night's budget, there are concerns over the funding of NDIS and what this means for other welfare recipients. The government has made it clear that in order to afford this, funding to other areas of welfare would be cut, as well reviewing 30,000 applications to the disability pension each year. The People With Disability Australia Organisation has criticised this decision, stating that "We should not be making trade-offs and false economies between specialist disability support and income support"

The Daily spoke to the People With Disability Australia President, Craig Wallace, to discuss the implications of this budget decision further.

Mobility Allowance changes in Budget 2016 - 2017

Crunching the Numbers – How does the Federal Budget 2016-2017 affect Speech Pathologists?
Addresses some budget measures of particular interest to people with disabilities.

Carers in the Kitchen workshops and more - Carers NSW 40th anniversary

Carers NSW is celebrating its 40th anniversary this year, with a series of events across NSW, including:

As part of the Carers NSW 40th Birthday celebrations we are launching a series of Carers in the Kitchen cooking workshops with My Kitchen Rules finalists, Helena and Vikki Moursellas. 

The monthly workshops run from June – November 2016 and will take place at the William Angliss Institute, 26/32 Waterloo St, Surry Hills 2010, and are dedicated to teaching you everything you need to know about budgeting, planning and preparing scrumptious meals for your family and friends.

Attendance is free for carers who are members of Carers NSW and you can register your interest online or by contacting the Communications Team on commsteam@carersnsw.org.au to obtain a printed copy of the registration form. 

Expressions of interest close Friday 13th May 2016.

40 years 40 stories

Throughout 2016 we are asking carers across NSW to share their caring stories. The stories will be complied and used to raise awareness of over 850,000 unpaid family and friend carers in NSW and the work they do in supporting a loved one. 

If you have a caring story or any pictures you would like to share, please send them to contact@carersnsw.org.au or post them to PO Box 20156 World Square NSW 2002.

A calendar of events across regional NSW is online here. To find out more about events happening near you or to request promotional material for your carer support group or organisation, contact the Communications Team on 02 9280 4744 or commsteam@carersnsw.org.au.

Joint statement on ADHC transfer

From NSW Council for Intellectual Disability (CID), Facebook post:

Together with our colleagues from Family Advocacy, NCOSS and Carers NSW, CID has today released a Joint Position Statement outlining concerns with the transfer process ... Next week we meet with ADHC representatives to discuss these recommendations and we will keep you updated on our progress.

Joint Position Statement - ADHC Transfer

NSW Council for Intellectual Disability Council, 6 May 2016

We are very concerned that the NSW Government’s process for transition out of service provision is based on ADHC choosing a person’s new service provider rather than that choice being made by people with disability with support as appropriate from their families and other advocates.

However, we are now focusing on recommendations that we can make aimed at the Government’s process including maximum input by people with disability and their families and achieving important goals such as a diverse market of service providers, meeting complex needs and maintenance of vital ADHC services that will not be continued by the National Disability Insurance Agency ... read the full statement and recommendations here, on the NSW CID website.

Weekend reading and viewing: 7 - 8 May 2016

Alastair McEwin appointed as new full-time Disability Discrimination Commissioner
Samantha Donovan, ABC News, 5 May 2016

Deaf Society president Alastair McEwin will take up the role as Disability Discrimination Commissioner at the Australian Human Rights Commission in late July, filling the vacancy left by Graeme Innes in mid-2014. He takes the reins from Susan Ryan, who has been juggling the role along with that of Age Discrimination Commissioner since the departure of Mr Innes nearly two years ago. While disability advocates have respected her work, they have wanted someone with a disability in the role as a full-time commissioner.

As well as his role at the Deaf Society, Mr McEwin is the chairman of the Disability Council of NSW. He is profoundly deaf. He said the appointment was "an incredible honour." ... more.

The Comparison Bitch

Mariah Nichols, 30 April 2016
We know we are not supposed to compare our kids. Point blank, we’re not supposed to compare them, be it compare them with their siblings or compare them with their peers, we know we aren’t supposed to go there. We’ve got that stuff about “every child being unique” coming out of our brains like steam out of a roiling kettle, but seriously. Does that change anything?

Can it even change anything, when we live in a comparison-based culture, when kids are assessed within an inch of their small brains, when we are hearing about how other mothers “do it”, when even inspiration porn has reign because “if they can do it, your excuse is invalid” ...

False Negatives: Evaluations of Functionally "Nonverbal" Children

Dana Nieder, Uncommon Sense, 30 October 2016

... Not only will believing the numbers send you down some sort of spiral-of-terrible-feelings, but believing them will change your expectations for your child. The numbers will change what you believe your child is capable of, they will plant seeds of poisonous doubt, and they will corrode your ability to presume competence. If you have a child who doesn’t speak, one of your biggest, constant jobs in life will be to advocate for their people to believe in them . . . so if you start to lower your expectations, others will follow ...

One Year On: Murmuration celebrates one year in the industry
Elle Evangelista, Dance Informa, April 2016
... I remember their launch night vividly. Held at their base, Addison Road Community Centre, there was a sense of excitement and expectation in the air as Murmuration officially launched as Sydney’s first professional integrated performance company back in April 2015. One year on, and the organisation continues going from strength to strength and exceeding many expectations originally set ...

Down Syndrome News, Volume 39, Number 1, Spring 2016
(US) National Down Syndrome Congress

In this issue ...

About my sister 

Greg Rogers, a living act of kindness  

Employee of the month, Tony Piontek 

Remembering ... Judith Ann Smith  

What I have learned from persons with Down syndrome 

A little NDSC history lesson  

Recommended reading and viewing  

NDSC at the American College of Medical Genetics and Genomics 

Self-Advocate Corner  

Esperar la perfección  

Engaging Insight: Keys to Person-Centred Thinking 

Céline Parent, Service, Support and Success: International Journal for Direct Support Professionals, Vol 5, Issue 5, May 2016
Let’s pretend for a moment that I live in a 24-hour support home. And let’s pretend that you work at that home, and you come in first thing in the morning which means that you are responsible for helping me get organized and out the door ...

• This excellent Canadian publication is now available in French and English
• Back issues of Service. Support and Success are freely available online

NSW Council for Intellectual Disability e-News, April 2016

My Choice Matters Newsletter, April 2016

NDIS April 2016 e-Newsletter

Latest additions to '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 

‘My Art, My Way’ Forum:Practice, Promotion and Self-advocacy
Roomies Arts - Free one-day professional development forum for artists with disability, arts workers and representatives from relevant sector agencies - an opportunity for artists and arts workers to meet other practicing artists with disability, learn how to promote your work, and share ideas about how to develop as an artist. Access available as required and bookings essential.
Tuesday 24 May 2016 - Hazelhurst Gallery, Gymea

Research to Action Conference
National Disability Services and the University of Sydney Centre for Disability Research and Policy -  a one day Research to Action conference focusing on how we will work at the interface of disability support services and our health system under the NDIS. People with disability, their families and carers, researchers, support service practitioners and policy writers are encouraged to attend. Participants will hear from researchers, service providers, people with disability and their families throughout the day.
29 June 2016 - Camperdown (University of Sydney)

Full-time Disability Discrimination Commissioner appointed today

Government Appoints Full-Time Disability Commissioner
ProBono Australia News, 5 May 2016
The federal government has appointed a full-time Disability Discrimination Commissioner – selecting former chief executive officer of People with Disability Australia Alastair McEwin for the role.

Attorney General Senator George Brandis said McEwin had been a longstanding advocate for the rights of people with disability, and had represented the interests of people with disability at all levels. McEwin is also a former manager of the Australian Centre for Disability Law ...

Comment from People with Disability Australia:

People with Disability Australia warmly welcomes the announcement today by the Attorney General of three new Commissioners for the Australian Human Rights Commission:

• Mr Alistair McEwin as Disability Discimination Commissioner
• the Hon Dr Kay Patterson as Age Discrimination Commissioner
• Mr Edward Santow as Human Rights Commissioner

In particular, we warmly welcome Alistair McEwin who is well known to us at PWDA as a former CEO and strong champion of the rights of people with disability.

We look forward to working with all three new Commissioners in progressing the rights of people with disability.

• Attorney-General's media release, 5 May 2016
• Human Rights Law Centre commentary, 5 May 2016

Added 6 May 2016 - background on new Disability Discrimination Commissioner's experience of disability and advocacy:

Alastair McEwin appointed as new full-time Disability Discrimination Commissioner

Samantha Donovan, ABC News, 5 May 2016

Deaf Society president Alastair McEwin will take up the role as Disability Discrimination Commissioner at the Australian Human Rights Commission in late July, filling the vacancy left by Graeme Innes in mid-2014.

He takes the reins from Susan Ryan, who has been juggling the role along with that of Age Discrimination Commissioner since the departure of Mr Innes nearly two years ago.

While disability advocates have respected her work, they have wanted someone with a disability in the role as a full-time commissioner.

As well as his role at the Deaf Society, Mr McEwin is the chairman of the Disability Council of NSW. He is profoundly deaf.

He said the appointment was "an incredible honour." ... more.

Australian Cross Disability Alliance welcomes new Commissioners, 6 May 2016

People with Down syndrome

Townsville's 'Master Shredder' shows how work can change the life of people with disabilities
Kathleen Calderwood, ABC North Qld, 28 April 2016
At 21 years old Emma Lynam is kicking goals — she has her own flat, her own small business, and recently hired her first employee.

Bringing a little Bolivia to Dunedin

David Loughrey, Otago Daily Times 13 April 2016

A Dunedin man has brought his Bolivian heritage and photographic skills back to the city after visiting the birthplace of his parents. Carlos Biggemann yesterday officially opened his exhibition ‘‘Carnaval de Oruro'' ...  with striking images from the festival in the city of Oruro ...

Meet Pablo Pineda: 10 Things To Know About First Person With Down Syndrome To Graduate College

Janel Saldana, Latin Times, 24 March 2016

Pablo Pineda has made of his life an on-going learning experience. Pineda, now 41 years old, was the first person with Down syndrome to ever graduate from college and he didn’t stop there. The unstoppable Spaniard can also be called a writer, teacher, actor, TV host, and conference speaker ...

The Chef of All Things

Eric Barton, Mirabels Magazine, April 2016

... It's three hours before dinner service at the much-acclaimed Fort Lauderdale restaurant Valentino Cucina Italiana, and things are hectic. There's a chef braising osso buco while another trims pork loins. On the front counter, sous chef Dean Bergman shreds cheese. It's not easy work. He's working on 5 pounds of Parmesan, and using a microplane no bigger than a desk ruler. He's smiling, though, the way someone smiles after landing a good job. Or maybe more like the job ...

"Love" - excerpt from Heartbreak and Beauty
Bus Stop Films, 15 April 2016
Our last excerpt, from our award-winning film, Heartbreak and Beauty, is love! Within the segment, Gerard O’Dwyer breathes life into the timeless, Shakespearean tragedy, Romeo and Juliet as he expresses the all consuming fire of romantic love. Gerard also breaks stigmas in this piece, as he eloquently recites Shakespeare while care-taking a lodge, showcasing that people with an intellectual disability are capable of a lot more than what society gives them credit for ...

Never Give Up: The Story of Collin Clarke

Men's Health, 1 May 2016

Budget 2016 - 2017: NDIS, carers

Budget 2016 - 2017

Full 2016 Budget Speech For Australia, Gizmodo, 3 May 2016

Full roll-out of the National Disability Insurance Scheme: 2016 Budget, Dept Social Services, 3 May 2016

Federal Budget: could be better, could be worse for carers, Carers Australia, 3 May 2016

Budget 2016: Concerns NDIS savings fund announced in budget could become 'political football', ABC News, 3 May 2016

People With Disability Australia: response to Budget 2016

PWDA media release, 3 May 2016:

Don’t fund our NDIS at the cost of our safety net

People with Disability Australia (PWDA) welcomes the Government’s overarching commitment to fund the National Disability Insurance Scheme (NDIS) into the future. However, we strongly reject the budget measures that link a fully funded NDIS with the need to cut welfare spending.

“We have always welcomed a discussion about funding the NDIS so it is sustainable into the future and to ensure it is taken out of the budget cycle,” Mr Wallace said. “However, the NDIS Savings Fund announcements risk moving the NDIS further into the budget cycle by creating an expectation that the NDIS will be funded from ongoing trade-offs against other equally important human services expenditures. If there is to be a savings fund, it should not be a device to make savings, and poor trade-offs between programs and services supporting and sustaining vulnerable members of our community.”

News from Down Syndrome Education International (2)

In addition to the releases and price reductions outlined in yesterday's post,  Down Syndrome Education International has conducted world leading research and produced highly regarded resources to support the development of people with Down syndrome of all ages for decades. They have recently released some of their popular films to rent or buy online on-demand via Vimeo. Links to trailers and information on access to each of the titles below:

• Speech and Language Activities for Preschool Children with Down Syndrome (2007)

• Activities for Babies with Down Syndrome 

• Educating Children with Down Syndrome at Primary School

'Willing to Work': report of inquiry released

Australian Human Rights Commission, 2 May 2016:

Speaking today at the launch of Willing To Work, Age and Disability Discrimination

Commissioner Susan Ryan ... described the Willing to Work report as “an historic first”.

“We have never had such a clear or detailed national picture of what happens to older workers and those with disability in the labour market.

“The exclusion of capable and skilled older people and people with disability from the workplace results in a massive waste of human capital and productivity. It drives increases in public expenditure that in the long term are not sustainable,” she said.

Key recommendations include:

• Establishing a Minister for Longevity
• Developing national action plans to address employment discrimination and lift the labour force participation of older people and people with disability
• Expanding the role of the Workplace Gender Equality Agency to become the Workplace Gender Equality and Diversity Agency
• Introducing national education campaigns to dispel myths and stereotypes about older people and people with disability
• Adopting targets for employment and retention of older people and people with disability in the public service.

The Report also recommends improvements to existing laws and policies and presents a suite of strategies for businesses and employers to improve employment of people with disability and older people.

The Australian Human Rights Commission hopes to see a speedy adoption and implementation of these recommendations, so that all Australians who are willing and able to work can do so.

• Commissioner's Foreword and links to download Willing to Work

News from Down Syndrome Education International (1)

Down Syndrome Education International has recently released lower prices for some See and Learn apps for iPad,  and free online introductions (video and print) for some of its popular, research based programs designed specifically to meet the learning needs of children with Down syndrome:

Find out more about Reading and Language Intervention in a free on-demand online presentation

In this presentation, Professor Sue Buckley introduces the Reading and Language Intervention for Children with Down Syndrome (RLI). RLI is an evidence-based program designed to teach reading and language skills to children with Down syndrome. The intervention incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomized controlled trial and found to improve rates of progress compared to ordinary teaching.

Save up to 30% with new lower prices for See and Learn apps
Down Syndrome education International (DSE) has introduced new, lower prices for all our See and Learn iPad apps and app bundles – offering savings of between 20% and 30%.

Free online presentation: Introducing See and Learn Numbers

See and Learn Numbers is designed to teach young children to count, to link numbers to quantity, to understand important concepts about the number system and to calculate with numbers up to 10. It also teaches early mathematical concepts important for understanding space, time and measurement - including color, size, shape, ordering, sorting and patterns.

In this presentation, Professor Sue Buckley discusses what is understood about how children learn about numbers and number concepts and how Down Syndrome Education International's See and Learn Numbers program is designed to support number learning for children with Down syndrome.

• View presentation
• Download handouts
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Free online presentation: Introducing See and Learn Language and Reading 
See and Learn Language and Reading is a structured teaching programme that is designed to teach children with Down syndrome to talk and to read. In this presentation, Professor Sue Buckley reviews what is understood about language development for children with Down syndrome and how this informs the design of See and Learn Language and Reading.

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Free online presentation: Introducing See and Learn Speech
DSE’s See and Learn Speech program is designed to help parents and educators support children with Down syndrome to develop clearer speech. In this presentation, Professor Sue Buckley reviews what is understood about the speech and language difficulties experienced by children with Down syndrome, what research suggests may be effective ways to promote improved speech clarity and how this evidence has informed the design of See and Learn Speech.

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Key Word Sign workshops: Hunter

Full details of workshop content are in this flyer

Members/Family/Carers: $32 

Service Providers: $100 

Purchase tickets online

Registration closes 11 May 2016

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)