Weekend reading and viewing: 1st - 2nd February 2014

How I'm raising my Down syndrome child

Meriah Nichols, News.com (Lifestyle - Parenting), 30th January 2014
... I think having a child with a disability is similar to learning how to run. We line up and listen to a whole lot of people tell us what we should do. Sometimes we hear them. Often we don't. They are usually talking from their own experience anyway and only slivers of what they say will have real applicable value to ourselves. Then we run: we try and try and try and try ... It's not a race; it's a relay. Of one generation of parents to the next ...

Families address matters of life and peace

Britt Kennerley, Florida Today, 28th January 2014
... with the longer, healthier lives enjoyed by many with Down syndrome ... mount as parents age — especially those old enough to remember being told their child might die before they did. Is my child getting the most out of life? Can I continue taking care of my child if we both have medical problems? And who will take care of my child if I die?

Poseidon Update 2: Workshop in Oslo 25/26 January 2014
Vanda Ridley, DSA (London) 29th January 2014

Last weekend the Poseidon Partners arranged a European Workshop in Oslo with participants from Romania, Slovenia, Croatia and Italy. Four people with Down´s syndrome from these countries took part with their helpers. We wanted to involve other European countries in the Poseidon project and find out what technology they might find helpful in their daily lives ...

I'm the unhealthy baby!
Tracey Spicer, The Hoopla, 29th January 2014
It’s something we’ve all said without thinking. The universally accepted response to the question, “So what are you hoping for, a boy or a girl?” is, “I don’t care, as long as the baby’s healthy”.

Thirty-four year-old Queenslander Karni Liddell found herself saying this, time again, to groups of friends: “Gosh, it would be your worst nightmare, wouldn’t it?!” Until one day, a few years ago, when she realised, “I’m the unhealthy baby. I’m the baby that I’ve been talking about; that people said wasn’t wanted. Does that make me everyone’s worst nightmare?” ...

Includes TEDx video (16m 38s) of Karni Lidell speaking at TEDxSouthBankWomen

My Child With a Disability Is Not My Hero

Sarah Sweatt-Orsborn, Huffington Post (Parenting), 30th January 2014
... The tendency of parents of kids with special needs and disabilities to say their kids are "heroes" makes me deeply uncomfortable ...

Who deserves the DSP?
El Gibbs, Ramp Up, 29th January 2014

Is the proposed 'crackdown' on the Disability Support Pension more about outdated ideas of what disability is and who people with disability are, than any budget savings? El Gibbs argues that receiving the disability pension should be about what people's needs are, not a moral judgement about who deserves it ...

News and commentary on the NDIS (15)

Transcript of interview about NDIS funding: Senator Mitch Fifield 

Peter Van Onselen, Sky News, 29th January 2014

... Tony Abbott, Joe Hockey, Mathias Cormann are all committed to the NDIS. And part of the reason for that is, this is getting back to what should be the core business of government. Now, we all believe in hard work and reward for effort, but we also believe in helping people who face extra challenges for reasons beyond their control ...

Moving from charity to insurance: Australia’s disability system transformed
Tony Abrahams, World Economic Forum, 16th January 2014
... The success of Australia’s NDIS campaign has global implications and gives cause for optimism for a better and fairer future for all. So, what were the ingredients of success? And can they be replicated?

NDIS information translations now available online

NSW Ageing, Disability and Home Care (News), 24th January 2014
Information about the NDIS for people with disability, families and carers now available in Arabic, Chinese, Hindi, Korean, Spanish and Vietnamese, as well as Easy English.

NSW Capacity Building for People with Disability
NSW Ageing, Disability and Home Care, January 2014
The NSW Government has demonstrated its commitment to supporting people with disability, families and carers prepare for the National Disability Insurance Scheme (NDIS) by investing in 'Getting Prepared' – capacity building projects which have been funded until 30 June 2015 ...

Disability advocates fear NDIS impact of budget cuts

ABC News, 17th January 2014
Cost blowouts and Government budget cuts have got people with disabilities and their advocates wary of assurances that the National Disability Insurance Scheme will go ahead as planned. (7.30 video 6m 57s)

NDIS privatisation a betrayal: Labor
AAP/Daily Telegraph, 16th January 2014
A potential sell off of the National Disability Insurance Scheme agency would betray disabled people and their carers, the federal opposition says. During a senate inquiry on Wednesday, the chairman of the Abbott government's commission of audit, Tony Shepherd, refused to rule out recommending a sell-off of the National Disability Insurance Agency (NDIA), which is tasked with rolling out the scheme ...

NDIS the key to 'happy families'

Rachel Baxendale, The Australian, 23rd January 2014
.... Ms McCallum, 43, spoke to The Australian as one of 22 participants in LEAD Barwon, a Victorian government-funded project aimed at developing the communication and advocacy skills of the disabled people, families and carers who are the first users of DisabilityCare, to help ensure the new scheme achieves its aims ...

Good health: Australian Healthy Weight Week

Thanks to Don't Dis My ABILITY for bringing Australian Healthy Weight Week to our attention.

Weight management is a very real concern for many people with Down syndrome, and the resources specifically designed for people with disabilities might be just what you are looking for.

Australia’s Healthy Weight Week (AHWW) is an initiative of the Dieticians Association of Australia (DAA) beginning on Sunday 16th February 2014.

Disability specific resources, nutritional material and a full 10 week program adapted for people with disability are available from the Australian Healthy Weight Week website (scroll down the page to just below the summaries of the ten weeks' activities for the links).

Starecase Issue 4, January 2014

Starecase is an Australian online magazine for and by people with  a disability.  Issue 4, January 2014 is available in a variety of formats now. 

The main  thrust of this issue is to include the 'voices of the wordless' ...

... the voices who need to be heard the most are often the smallest voices. The voices of the ‘wordless’ - the silent minority, the unrepresented, and those who do not communicate by speech. 

We wanted this edition to strongly include those voices - and we are overwhelmed and awestruck by the power of your contributions ...  from the Green Chair, p 2

This issue also covers recent announcements and debates about employment of people with disability: the right to be paid fairly, news on the BSWAT and the impending review of the Disability Support Pension.

This month: 

• Not just another statistic  ...  Joel Wilson on employment and autism
• Someday hero  ...  a poem by Adrian Kooistra 
• Laser Beak Man  ...  artist Tim Sharp is challenging stereotypes  
• Brotherhood of the Wordless  ...  barriers to communication haven’t stopped the Brotherhood of the Wordless 
• Jobs  ...  our guide to the BSWAT and all the news in disability and employment 
• Adam Cope armed now with hope  ...  in Adam’s words and a review by Genee Marks 
• Wow, he said  ...  Dave Hingsburger on life, love and disability 
• Rowan’s voice  ...  Rowan was never heard - and so we include his voice here

Survey about employment, and information about a welfare review and Australians with disability

People with intellectual disability or family members are invited to complete a survey - to understand how individuals and their families make decisions about employment and employment services.

The results will be used to prepare a public report on what information and support is important to people with intellectual disability and their families when looking to find a job.

The survey has been prepared and distributed by the National Council on Intellectual Disability (NCID) - the national peak body representing people with intellectual disability and their families.

• Click here to access the survey

These articles are about the Federal Government's planned review of welfare benefits that will include eligibility for the Disability Support Pension. You will find more information about employment payments and the welfare review in Starecase, Issue 4 (see the post above):

• Disability Peak Bodies Meet with Welfare Reviewer

ProBono News Australia, 23rd January 2014
Disability peak bodies have told the reviewer leading the probe into Australia’s social welfare system that workforce participation and meaningful jobs with award wages for people with disability must be made an immediate priority. 

The Australian Federation of Disability Organisations (AFDO), a national organisation funded by the Government to represent the voice of people with disability in Australia, and the National Council on Intellectual Disability (NCID) met with welfare reviewer Patrick McClure and Federal Social Services Minister Kevin Andrews’ Chief of Staff to talk on the review of the Disability Support Pension (DSP) and Newstart ...

• Let's have some real, mutual obligation

Craig Wallace, Ramp Up, 24th January 2014
With yet another review of welfare payments looming, Craig Wallace hopes that recommendations from the previous review are considered and that mutual obligations are enforced between stakeholders to ensure genuine access to economic participation opportunities.

Back to school photos invited for 2014 gallery

Most NSW school students will be starting Term1 this week - we wish you all well for the new school year, and your teachers.

If you or your child would care to share a photo from this week, we could put together an 'off to school in 2014' gallery, of those returning to school, or starting the adventure of school for the very first time, moving on to primary school form infants, to high school from primary, or starting your last year of schooling.

Please email any contributions to blogeditor@dsansw.org.au

Thanks.

Belonging and Connection of School Students with Disability

Children with Disability Australia has released its latest issues paper Belonging and Connection of School Students with Disability by Dr Sally Robinson and Julia Truscott, online, before its official launch, with this summary:

All students want to feel like they belong and that they are valued in their school community. School is a centrally important place to young people — not only where they learn fundamental academic knowledge, but also where skills in making and keeping friends, relating to peers, and social justice principles are learnt and practiced. What happens when young people feel like they don’t belong? 

This paper examines a series of key issues about belonging and connection for students with disability and demonstrates research that shows:

• Feeling a sense of belonging and connection makes a positive difference to school life.

• There are a number of key elements to belonging and connection — friendship, peer acceptance, capability, being valued and supportive relationships with key adults.

• When belonging and connection are threatened, there are several areas in which the impact is seen. The friendships of students are limited; they are lonely; the places they can go within the school are controlled; there are tensions in negotiating support relationships; students feel and are excluded; and kid’s strengths aren’t seen by other students or adults in their school communities.

• Bullying is a particularly strong threat to a felt sense of belonging and connection.

Children with Disability Australia, 23rd January 2014 

The paper is available here.

Notices added to 2014 events page

Dementia & Intellectual Disability - free workshop for carers
Alzheimer's Australia NSW
4th March 2013 - North Ryde 

Tee Up for Down Syndrome: 26th February 2014

Wednesday 26th February 2014

The Coast Golf Course, Little Bay

• Click here for a detailed flyer including information about registration packages (teams and individuals), prizes, sponsorships and to download the registration form

• Please note that all Premium Sponsorships need to be booked and paid for by COB Thursday 30th January 2014 to ensure production of promotion material.

Weekend reading and viewing: 25th - 26th January 2014

Education, Cheap Cider and Redcurrant Sauce
Paul Critchlow, Orange Juice Flavour Sky, 17th January 2014
... I've just read about a young girl who is the only one of her class not to be invited to a birthday party. Why? I don't know but one can only draw the conclusion that it is something to do with the extra chromosome she has. I mean, seriously people, what kind of world are we creating when we allow things like this to happen? What kind of prejudice still exists in our society? Is this 1914 or 2014? ...

John C McGinley interview - video (6m 17s)
Home and Family (Hallmark Channel),
Actor John C. McGinley discusses his journey in raising a special needs child in an integrated family.

Ordinary Choices
Jisun Lee, Kimchi Latkes, 18th january 2014
... What hurts my heart is the idea that the rest of the world might never allow him, a person with Down syndrome, to experience such ordinariness. Here I am worrying about whether my daughters will be ordinary—as if that were something intrinsically bad—while my son may struggle for that choice.

On Adopting a Kid With Down Syndrome

Kari Wagner-Peck, Huff Post Parents, 21st January 2014
You want to know what people really think about kids with Down syndrome? Tell someone you're thinking of getting one. No one said anything close to "Hey, awesome!" It was more like "Why do you want to do that to yourself?" or "That sounds hard" or "Don't do that, please." ....

He's no super hero
Leticia, Embracing Wade, 22nd January 2014
... My problem comes from the fact that the book is labelling these qualities and achievements as Super Powers. This makes me very uncomfortable. I can’t see how swapping a negative stereotype about disability with an overly positive stereotype is helpful. It feels like a step too far in the opposite direction ... (Warning: you might be overcome by the extreme cuteness of the current banner photo on this blog!)

Misguided praise for parents of children with disabilities - The Bless Your Heart Phenomenon

Alison Piepmeier, Charleston City paper, 15th january 2014

... It's an effort to be meaningfully kind, and I appreciate that effort. And yet it's still uninformed and based on stereotypes about people with disabilities. Maybelle becomes less than a child. She becomes a kind of burden, a burden I'm willing to carry because I'm special, different. "I could never do it," people will say to me. They could never manage this burden, but I do it because I'm not like a normal person ...

What siblings without Down syndrome are thinking
Maureen Wallace, She Knows - Parenting, 1st March 2013
... (Dr Brian Skotko) has a younger sister, Kristin, who has Down syndrome, so he is walking the walk. Over his lifetime and career, he has interviewed more than 3,000 brothers and sisters of individuals with Down syndrome. He has dedicated his life to becoming what can only be described as The Sibling Whisperer ...

A birthday post

Kelle Hampton, Enjoying the Small Things, 22nd January 2014

... I hope this girl knows how exotic and beautiful almond eyes are; how valuable her abilities, her love, her mere existence is; how full these past four years have been with her ...

It's not about political correctness, it's about not being an asshole

Green Ginger Tea, 23rd January 2014
Lately I can't help but notice there's a great deal of whining from people about being "forced" to use "politically correct" terms. Lots of hand wringing over the "word police." What's interesting is that every single time I see this kind of whining it comes from white, abled-bodied, neurotypical, straight people ...

Contribute to DSA submission to Communication disorders inquiry

Down Syndrome Australia is developing a submission to the Australian Senate Committee on Community Affairs inquiry into communication disorders and speech pathology  services in Australia. 

We are seeking information from people with  Down syndrome and their families on their experiences regarding speech pathology services. We would particularly like to hear  about access issues, gaps in information and services, inequities and availability of quality supports. This includes information on any  specific programs or service models that have worked well.

Members are encouraged to complete this survey to provide information for use in the Down Syndrome Australia submission.  

Please note that you are also very welcome to make your  own submission to the inquiry - see the Down Syndrome Australia website for further information.

The submission is due on 21 February but we would appreciate responses asap and at least by 7th February.

News and commentary on employment of Australians with intellectual disabiities

The recent announcement by the Federal Government about a payment scheme for workers assessed under the Business Services Wage Assessment Tool, and its consequences continues to raise interest in the disability and wider community. Here is some of the latest media:

Short changed by discrimination

Stella Young, Ramp Up, 21st January 2014
Whether or not we like our jobs, most of us are paid fairly for the work we do. But many Australians with intellectual disabilities are working full time for less than $2 a day. Where's the dignity in that, asks Stella Young.

Law firm Maurice Blackburn slams Government's one-off payment offer to underpaid workers with disabilities
Simon Lauder, The World Today (ABC Radio), 21st January 2014
Law firm Maurice Blackburn says underpaid intellectually disabled workers have been made an unfair offer by the Federal Government. (Audio file and print)

Fighting for dignity for workers with disability Emeline Gaske and Kairsty Wilson, Ramp Up, 21st January 2014
Despite a 2012 Federal Court ruling that the method for determining wages of workers with disability is unfair, the Government continues to ignore the court's decision and is moving to strike another blow against some of the most low-paid and vulnerable in the workforce, writes Emeline Gaske and Kairsty Wilson.

Maurice Blackburn wins temporary reprieve on disabled workers court action

ProBono Australia News, 23rd January 2014
Law firm Maurice Blackburn says the Federal Government has agreed to hold off from initiating further contact with underpaid intellectually disabled workers who are part of a class action over unfair pay ...

Disability discrimination - how are we doing?

Last year marked the 20th anniversary of disability rights legislation in Australia. This week, Ramp Up hosted a discussion of how well it works in these articles and the comments in response to them:

Are your rights working?

Eliza Cussen, Ramp Up, 15th January 2014

Despite 20 years with anti-discrimination legislation, discrimination is still rife and many people with disability are prevented from achieving full status as members of Australian society, writes Eliza Cussen ...

Our Disability Discrimination Act at work
Graeme Innes, Ramp Up, 22nd January 2014

Last week on Ramp Up, Eliza Cussen considered the viability of lodging complaints under the Disability Discrimination Act. In this follow-up article, Disability Discrimination Commissioner Graeme Innes responds ...

People with Down syndrome in the media

Runcorn swimmer Ashley-Kate Schlenner is preparing to head to Mexico to represent Australia at an international event

Hayley Sultane, Courier Mail, 11th January 2014

... Ashley-Kate Schlenner has only just returned from representing Australia at a major international event and she is already in preparation for her next challenge. The 21-year-old swimmer, who has Down syndrome, has been selected to wear the green and gold and represent Australia at the 7th Down Syndrome International World Championship to be held in Mexico in November ...

Woman with Down syndrome retires after fulfilling career

Scott Hewitt, The Columbian, 12th January 2014
... Shelli Fanning has just hung up her apron and rubber gloves after a 23-year housekeeping career at the Red Lion Hotel Vancouver at the Quay ...

Growing Up Down's
William Jessop, Down's Syndrome Association (London), 16th January 2014

... I filmed the actors both inside the theatre and at home for a year, sharing every step of what would become a life-changing journey. The film we have made is very intimate. I hope that it will explode some unhelpful myths ...

Maine couple living with disabilities create real-life fairytale romance

Aubrie Howard, Bangor Daily News, 15th January 2014

... Their first date was in 2005 when Kennedy took Dyer to her junior prom. Fast-forward eight years, and Kennedy, now 29, and Dyer, 26, are engaged. Kennedy proposed in May at Boston Public Gardens, surrounded by a bed of multicolored tulips. The couple has set a wedding date of August 2014 in Dyer’s hometown of Surry ...

Service, Support and Success: Volume 3, Issue 1

Congratulations to Dave Hingsburger and Angie Nethercott, on beginning the third year of successfully publishing this highly regarded Canadian newsletter for people working to support those with intellectual disabilities. Enjoy Volume 3, Issue 1 of Service, Support and Success:

... It’s odd working in service to people with intellectual disabilities that we are often taught, prodded and reminded to be POSITIVE in our approach to people with disabilities, that we need to use REINFORCEMENT and that we need to PRAISE more often. And yet, as a field we tend not to be particularly positive with each other and we are probably way more critical of each other than we really ought to be ...  click here to read this issue online, and for links to all back issues.

'Make it Monday'

'Make it Monday' is a new series of blog posts from Jennifer Bekins at Talk- DS, focusing on ways
to extend speech and language therapy activities, into other areas of children's interests.

Jennifer's 'Make it Monday' Pinterest board would be a useful one to follow too.

2014 events

Image: Pixabay.com

This year, we will maintain a single 2014 Events page on the blog, with a permanent link just under the banner at the top of this page, so that you check in easily.

Direct links to individual events hosted by other organisations will be posted there as information is received, and the addition flagged as a short blog post set out like these most recent entries:

Getting Started and Get More Skills Workshops
My Choice Matters
4th - 28th February 2014 - NSW South Coast/Inner West/Southern Sydney

Outing Disability - photographic exhibition
Family Planning NSW
6th February - 1st March 2014 - Chippendale

Full details of Down Syndrome NSW events will continue to be posted as individual blog posts, with a link on the events page.

Good health: fitness recommendation from the Adult Down Syndrome Clinic (22 years old this week!)

cricket might be 'our' game, but we can do baseball activities for fitness, can't we?

Free until 31st January

Here's an iPad fitness app recommendation from the experts at the Adult Down Syndrome Clinic in Chicago.

Congratulations to the Adult Down Syndrome Clinic on the 22nd anniversary of your opening, on 17th January. That's a lot of experience working with adults with Down syndrome, and a wonderful contribution to the community, worldwide.

Great resources about relationships: a newsletter, a video and a Facebook page

Relationsips and Private Stuff newsletter online
This issue includes information about

• Relationships and happiness
• A Healthy Living Checklist
• A movie recommendation
• A Relationships Skills workshop on 1st February in Burwood
• Two dates for Date-able Dances in February

Liz Dore, from Relationship and Private Stuff is interviewed in this video, available online, about the need for relationships, as is a young gay man with a disability:



Relationsips and Private Stuff newsletter online
This issue includes information about

• Relationships and happiness
• A Healthy Living Checklist
• A movie recommendation
• A Relationships Skills workshop on 1st February in Burwood
• Two dates for Date-able Dances in February

Relationships and Private Stuff is also on Facebook, here

We're back at work today ...

It is not too late to order copies of our 2014 Down Syndrome NSW calendar, if you are quick.  Our office re-opens after the summer break, so now is a good time to send in your order.

As it has been for the past 15 years, this year's calendar was produced by professional photographer and Down Syndrome NSW member, Craig Peihopa (Timeline), with photos contributed by DS NSW members.

Calendars are $16.50 each, including GST, postage and handling.

• Download and print an order form for our 2014 Calendar here

Weekend reading and viewing: 18th - 19th January 2014

The Girl with Down Syndrome
Michael Bailey, 1998 - reposted as a Facebook note, 12th January 2014
... A statue of a young girl with Down syndrome.The features unmistakable over the millennia and smiling happily and shyly at the artist. The rendering clearly not the work of a simple artisan but rather of an accomplished sculptor and one who clearly loved this little girl. Everything about her done to flatter and highlight her features and show her calm loving and childish gaze ...

If you cannot access this piece on Facebook, click here to read the full text of the article.

The 1000 miles of Luca (video, 9 m)

Pablo Poncini, TWBA, 15th January 2014
... “And then little by little the Down syndrome disappeared and Luca appeared” ...

Norm Parker saved my life

Matt Bowen, The Gazette, 13th January 2014 (republished from 2011)
... Not many fathers have to fall back in love with their kids. I did. And I am man enough to admit that I struggled with Matthew’s diagnosis to a point where I didn’t know what to do. Norm changed that ...

Down syndrome? Maybe she'll go to the moon

Bret Bowerman, CNN, 14th January 2014
... Recently, we asked Ellie's older brother, "Do you remember what it means for Ellie to have Down syndrome?" "Yes," he answered. "It means she can go to the moon. But it's not fair, why does Ellie get the extra 'chrome?'" ...

Father's Beautiful Journey With Son Who Has Down Syndrome Will Make Your Heart Soar

Ron Dicker, The Huffington Post - Parents, 14th January 2014

... "Little by little, the Down syndrome disappeared and Luca appeared," the father recounts tenderly in the (video) clip (that accompanies the story)...

Why Does Our Culture Celebrate Down Syndrome?
Amy Julia Becker, Thin Places, 13th January 2014

... the “two stories” of Down syndrome. One story is a story of eradication–an increasing number of women who have access to technology for prenatal diagnosis of Down syndrome who then choose to terminate. The other story is one of inclusion–increasing supports for individuals with Down syndrome and their families at school, through medical advances, and in the workplace ...

Using whatever helps for communication
Aileen Ryan,  Key Word Signing and Proloquo2Go, 17th January 2014
... Sign language was very needed (by Elysha) and the sad point was that we had to fight for it every step of the way once Elysha reached school age. Why did we have to fight so hard? Because she wasn't Deaf enough and the  (NSW) Department of Education don't take into consideration the need for sign language for children with speech and/or developmental delay (beyond the very very basics) ...

10 Things The World Can Learn From People With Disabilities

Tiffany Carlson, Huff Post Impact, 10th January 2014
No matter the type of person, there are lessons to be learned from them. People with disabilities are especially influential, as our hardships in life aren't easily forgotten. We go through every day with determination and strength, which many people are bowled over by, with many secretly wondering if they could do the same thing.

People with a disabilities learn so much throughout their lives; life lessons that able-bodied people rarely get to experience ...

Employment and Disability: a complex problem with no simple solution
Dr George Taleporos, Ramp Up 13th January 2014
Workforce participation of people with disability has been in the spotlight recently, with the Australian government announcing a review of the Disability Support Pension. Dr George Taleporos explores the issues and looks into some major government and business reforms to increase employment opportunities for people with disabilities ...

The Arc and UCP React to Offensive Language to People with Disabilities in 'The Wolf of Wall Street'
The ARC, 13th January 2014
The Arc and United Cerebral Palsy released the following statement in response to the use of the r-word and the offensive depiction of cerebral palsy in the new film The Wolf of Wall Street ...

National Senate inquiry into speech pathology

Do you have concerns, queries or suggestions about the provision of speech pathology services to people with Down syndrome in Australia?  Have you had good experiences, or not so good experiences in seeking speech pathology services?

The Australian Senate Community Affairs Committee has announced an inquiry into the ...

Prevalence of different types of speech, language and communication disorders and speech pathology services in Australia - visit the inquiry's home page for details about making a submission  

• Submissions should be received by 21 February 2014. 
• The reporting date is 27 March 2014.

Added 24th January 2014:

Down Syndrome Australia is developing a submission to the Australian Senate Committee on Community Affairs inquiry into communication disorders and speech pathology  services in Australia. 

We are seeking information from people with  Down syndrome and their families on their experiences regarding speech pathology services. We would particularly like to hear  about access issues, gaps in information and services, inequities and availability of quality supports. This includes information on any  specific programs or service models that have worked well.

Members are encouraged to complete this survey to provide information for use in the Down Syndrome Australia submission.  

Please note that you are also very welcome to make your  own submission to the inquiry - see the Down Syndrome Australia website for further information.

The submission is due on 21 February but we would appreciate responses asap and at least by 7th February.

Good health: a family's 'Heart Tale'

Advances in the treatment and management of congenital heart disease have been very important for children with Down syndrome, in whom the incidence of congenital heart disease is around 50% - much higher than in the population as a whole.  This is a well told story about a child with congenital heart disease growing into healthy adolescence, a prenatal diagnosis and the impact of seeing other people with Down syndrome doing the most ordinary of things:

Heart Tale
Amy Dietrich Hernandez, Concave Bed, Concave Life, 14th January 2014
... We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance ...

News and commentary on the NDIS (14)

Dates and venues for NDIS Community Forums - Hunter region, February 2013
You are invited to:

• Hear detailed information about the National Disability Insurance Scheme
• Meet members of your local National Disability Insurance Agency team
• Learn about becoming involved with the scheme
• Ask questions

New National Standards for Disability Services endorsed
Department of Social Services, 20th December 2013

At the 18 December meeting of the Standing Council on Disability Reform ministers from all jurisdictions endorsed the revised National Standards for Disability Services.  These new standards are seen as a transitional reform enabling nationally consistent quality standards to apply for the disability services sector. They have a greater focus on person centred approaches and promote choice and control by people with disability. These are considered critical under the National Disability Insurance Scheme ...

Disability funding is no charity - it's an investment
Elizabeth Manning, The Conversation, 19th December 2013
... Aside from the fact that the NDIS is set up to provide only “reasonable and necessary” services, Hockey and Newman are missing the bigger picture: investment in disability support now will deliver savings later ...

Disability scheme changes Lynne's life
Rachel Baxendale, The Australian, 27th December 2013

For the first time in years, Lynne Foreman has been able to sleep in the same bed as her husband.
The Geelong great-grandmother has also received a pair of new shoes after a three-year wait, and a new wheelchair is on its way. The 57-year-old has become one of the first people to benefit from the National Disability Insurance Scheme ...

First news of new payment for people working in Australian Disability Enterprises, and PWD's response

Payment scheme for workers assessed under the Business Services Wage Assessment Tool

Joint Media Release: Senator The Hon Mitch Fifield,Assistant Minister for Social Services and The Hon Kevin Andrews MP, Minister for Social Services, 15th January 2014

The Australian Government will establish a payment scheme for supported employees with intellectual disability in Australian Disability Enterprises who previously had their wages assessed under the Business Service Wage Assessment Tool (BSWAT). 

The scheme will deliver certainty for these employees, their families and carers, as well as their employers, while the implications of the BSWAT court decisions are worked through. 

The establishment of the scheme follows the outcome of the recent Federal Court case brought by Mr Nojin and Mr Prior. 

Longer term, the Australian Government will develop a new wage assessment process.
The Australian Government’s priority is to ensure minimal disruption to the employment of these supported employees. 

We want to assure people with disability, their families and carers that the Australian Government remains committed to ensuring supported employees have certainty about their future employment within Australian Disability Enterprises. 

Employees with intellectual disability, who have worked in an Australian Disability Enterprise at the Grade 1 or 2 Level, have been paid a pro-rata wage assessed using the BSWAT and have experienced economic loss, will be eligable to register for the scheme from 1 July 2014. 

The Australian Government will provide more information about eligibility and other details as the scheme is developed. 

Further information on the scheme is available by calling 1800 880 052 or by visiting www.dss.gov.au/bswat/PaymentScheme. 

Further information for media can be found at www.dss.gov.au/bswat/media.

Further information released on 15th January 2014:

• Questions and Answers: BSWAT Payment Scheme
• Background information on BSWAT
• 
  

People with Disability Australia has responded to the announcement:

• Economic loss acknowledged but discrimination continues (15th January 2014)

... “While today’s announcement is a welcome recognition of the detrimental impact of the BSWAT wage assessment tool on the lives of people with intellectual disability, the scheme does not address the discriminatory impact of the continued use of the BSWAT in ADEs. Broad reform of this sector is urgently required to end use of the BSWAT, transition to the Supported Wage System, and to provide genuine employment support to people with disability to move in to open employment.”

“PWDA looks forward to a thorough consultation process on the need for these reforms, as well as on the details of the scheme. Any engagement process must include workers with disability in ADE’s and their representative organisations.” ... read the full text of PWD's response here

People with Down syndrome in art and on stage

A recent trawl through the internet for an image of an ancient sculpture of a child with Down syndrome was not successful, but Stefan Czapki's photo of Sam and Dickie, sculpted by Brian Alabaster, was a welcome 'find'.  Visit its Geograph UK page for more information about the work, and where you can see it.

© Copyright Stefan Czapski and licensed for reuse under
this Creative Commons Licence

The search also brought to mind this post from two years ago, about another beautiful work of art, this time in Paris.

Ups and Down's of Hamlet
Lorelei Reddin, Southern Daily Echo, 9th January 2014

A Hampshire theatre company will star in a BBC documentary later this month.

Growing Up Down’s is the incredible story of a group of young actors with Down’s Syndrome, who set out to create a touring production of Shakespeare’s Hamlet. Along the way, the play begins to blur with their real lives, leading to romance, rows and revelations ... read more here.

What we can expect from ADHC: Service Charter

You might recall that NSW Ageing, Disability and Home Care asked early in 2013 for input to the development of its first Service Charter. The finished Charter was released online last month:

'A new Ageing, Disability and Home Care (ADHC) Charter setting out the rights and expectations of people with disability and older people when they access supports and services has been released. 

The Service Charter outlines the standard of service people can expect from ADHC services and contains practical and easy-to-follow advice to ensure people get the most out of ADHC services. 

It provides an overview of the standard of service clients and their families can expect, how these standards are monitored, and what people can do if services do not meet expectations. 

The Charter is rights based and person centred, with an emphasis on people who receive ADHC-funded services. It aligns with the current focus on person-centred approaches, the transition to the National Disability Insurance Scheme and existing Stronger Together 2 and Ready Together commitments. 

The ADHC Service Charter is available in English, Easy English, and 27 languages other than English. 

The Charter is the first of its kind to be introduced within ADHC, and includes clear information about how to provide feedback and make a complaint about a breach of the Charter or any other issue. 

To view the charter visit the Service Charter page.'

Source: ADHC News, 6th January 2014 

Ethan Saylor's death - one year on

As the first anniversary of the death of Ethan Saylor in Maryland (USA), the local and wider response continues to unfold:

The legacy of Ethan Saylor
Jeremy Meyer, Denver Post, 11th January 2014
... The death of Ethan Saylor at the hands of sheriff's deputies who were trying to evict him from the theater he entered without a ticket has become a significant event for people in the disability community who push for equality and inclusion as a civil rights issue ... The incident should stand as a catalyst for change in a world already changing for people with disabilities ... A growing number of people with Down syndrome, autism, mental illness and other disabilities mean there will be more encounters in everyday life. First responders must learn to deal with someone who may not respond to crisis in a familiar way. Training is essential ...

The (US) National Down Syndrome Congress commented that Jeremy Meyer's editorial  is 'thoughtful and well written'.

After Ethan Saylor death, panel calls for better training on disabilitiesJessica Anderson, The Baltimore Sun, 9th January 2014
... "Current training of law enforcement personnel in Maryland on how best to interact with individuals with intellectual and developmental disabilities is not offered in every jurisdiction and what is provided is inconsistent and not comprehensive," the (Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities) wrote in a progress report released Thursday ... The group will create recommendations for policy and training law enforcement, and other first responders who regularly interact individuals with developmental disabilities ...

People with Down syndrome ... on both sides of the camera

Picture Me, Picture You
Loaisha and Emer Gillespie, 2008 - ongoing

Picture you, Picture me is a collaborative and explorative portrait project with my daughter Laoisha. Naturally evolving from my daughter’s curiosity and urge to stand on the other side of the camera, she has taken more and more control of the camera and of me ... The project and image content will evolve naturally in relation to Laoisha's ability to control the camera and the development of her visual language and will continue on until she no longer wants me in the picture.Exploring topics such as child autonomy and the relationship between subject and photographer it allows the viewer a personal view into this mother/ daughter relationship ...

Other photographers and photographic projects of interest:

• Oliver Hellowell (photographer)
• My Perspectives (annual competition) 
• Shifting Perspectives (photographic project)
• Kids with a Little Extra (photographic project by Conny Wenk)

Weekend reading and viewing: 11th - 12th January 2014

Who's in the show this year: Adam Lewis
Olga Taylor, Urban Nutcracker, 4th December 2013
When Ann and Barry Lewis brought her son Adam to the Boston Ballet Adaptive Dance program in 2002, they didn’t know that music and dance would become his life-long passion. In fact, at that point nobody knew anything ...

Skip the Resolution - Make It a Goal
Joan Medlen,  Wellness Walk Talk (blog) 1st January 2014
... For parents of children with disabilities, the concept of setting goals is a snap. We've done goal setting since our kids were born. The beauty of this is that you can do it yourself. It doesn't require a team. Your goals are your own. Working with a partner to reach individual goals is a good idea. You may even have the same ones. Goals are also good for our kids! Especially around health related changes ...

What Would He Be Like If He Was Not Born with Down Syndrome?Eliana Tardio, Living and Loving with down Syndrome, 9th january 2014
... There is a time in our lives when questions are just that, simple questions that may lead us to deep reflection ...

Pay it 4Ward
Kelle Hampton, Enjoying the Small Things, 9th January 2014
... I stood long enough to observe a five-minute scene that occurred a few feet from me, and because it was Christmas Eve or perhaps because it mirrored a piece of our future—one that sometimes overwhelms me—I smiled through tears ... I feel like we’re off the “Go” space on the board game now, away from the security of “just let me enjoy these first few years of no worries” and venturing into the next squares that lead to that curvy path of more unknowns ...

What to expect for Down syndrome prenatal testing for 2014

Mark Leach, Down Syndrome Prenatal Testing, 3rd January 2013
... 2014 will see the largest expansion in the number of women undergoing prenatal testing. Many will receive the materials and counseling recommended by professional guidelines. Even more will not, unfortunately ...

Concerns discrimination against disabled widespread and varied in Australia's justice system
Nance Haxton, AM (ABC Radio), 2nd January 2014
Australia's disability discrimination commissioner is concerned that too many of the state's top lawmakers are unwilling to change the justice system in order to make it fairer for people with a disability ...

Sexual Bill of Rights ( online video 5m 24s)
People First of San Luis Obispo, 2nd October 2013
People First of San Luis Obispo is a self advocacy group run by and for people with developmental disabilities. This is intended as a training video for anyone supporting people with disabilities. The first part describes the problem. The second part describes rights we all take for granted ...

We Have Choices (online video (29 mins)
Self Advocacy Association of New York... documentary on individuals with developmental disabilities across New York state who have used individualized supports in taking greater control of their lives ... (there is a link to a 10 minute version)

NSW Civil and Administrative Tribunal opened for business on 1st January

From the NSW Council for Intellectual Disability, E-News, December 2013:

Key features of Guardianship Tribunal preserved The NSW Civil and Administrative Tribunal opens for business on 1 January 2014.  The new NCAT brings together 23 existing tribunals dealing with consumer claims, residential tenancies and a wide range of other issues.   The Guardianship Tribunal also becomes part of NCAT.  However, the Government has responded to the advocacy of NSW CID and others by preserving key features of the Guardianship Tribunal.  The new legislation provides that there will be a separate Guardianship Division of NCAT and: Applications for guardianship and financial management will continue to be heard by three tribunal members. The Guardianship Division will continue to provide written reasons for all decisions. The Guardianship Division will continue to have a hearing for all cases.  NSW CID congratulates the Government and the Attorney General in particular.  The new legislation will prevent the erosion of fundamental safeguards on the rights of people with disability.   In other states, the usual practice is for one member, often with little experience in disability, to hear cases.  Written reasons are rare.  Also, many cases are done by a member just reading the paperwork rather than meeting the person with disability and their family in a hearing.  The first President of NCAT is Justice Robertson Wright who has already shown that he appreciates the informal, expert and inclusive way in which the Guardianship Tribunal operates.   The Guardianship Division will continue to be in its own premises at Balmain and have its existing phone number.   The current Guardianship Tribunal President Malcolm Schyvens will become a Deputy President of NCAT and head of the Guardianship Division. The Guardianship Tribunal of NSW website says that the '... change will not impact on the management or resolution of any matters in progress before the Guardianship Tribunal.'

Health: moya-moya, a rare condition in a young man with Down syndrome

The neurological condition, moya-moya, is a little more common in people with Down syndrome than others, although still very rare.  We know of a small number of people with Down syndrome in Australia who have been diagnosed with and treated for moya-moya, as described in this recent US media report from Coshocton, Ohio:

Local family trying to raise awareness about son's rare brain disease
Coshocton Tribune, 26th December 2013

Wyatt Guilliams, 11, likes taking pictures and photos on his iPad, revels in playing games on his Xbox, and says he can’t wait for Christmas to come. 

That’s all typical for a boy his age, but what isn’t typical for the Warsaw Elementary School fourth-grader is his duel with a rare brain disease called moyamoya syndrome. 

Wyatt has Down syndrome and related growth and development problems. It was through medical tests for his low growth hormone levels that the moyamoya, which causes strokes because of blocked arteries at the base of the brain, was determined in August ... read the whole article from the Coshocton Tribune here.

New funding scheme for dental treatments for children launched on 1st January

Dental care is, of course, as important for children with Down syndrome as for any child - and as costly. 

Eligible families should have received written notification of a new federally funded scheme (through the Department of Health and the Department of Human Services) to provide selected dental treatment for children 2 - 17 yrs from 1st January 2014. The Australian Government Department of Health's website introduces the scheme with a link to further information for families:

The Child Dental Benefits Schedule (CDBS) will commence on 1 January 2014 and will provide access to benefits for basic dental services to around 3.4 million children aged 2-17 years. It will replace the existing Medicare Teen Dental Plan (MTDP). 

The total benefit entitlement will be capped at $1,000 per child over a two calendar year period. The CDBS will have a means test, which requires receipt of Family Tax Benefit Part A (FTB-A) or a relevant Australian Government payment. 

The CDBS will provide individual benefits for a range of services including examinations, x-rays, cleaning, fissure sealing, fillings, root canals and extractions. Benefits will not be available for orthodontic or cosmetic dental work and will not be paid for any services provided in a hospital 

Information for familiesFurther information for families on the CDBS is available from the Department of Human Services website.

People with Down syndrome in the media

Rion Holcombe gets a special letter in the mail (video, 1m 30s)
Posted by Susan Holcombe, You Tube, 6th December 2013
Rion Holcombe, a 20 year old with Down syndrome, gets a special letter in the mail ... and his dream come true, the chance to become a college student!
This short video has indeed gone viral - nearly two million views since it was posted on 6th December.

One of the UK's oldest men with Down's Syndrome celebrates 70th birthday
Joanna Morris, The Northern Echo, 23rd December 2013
... His mother Ruth refused to put (Micky Neal) into a home and he was brought up alongside his siblings in a supportive and loving family – something his brothers and sisters feel has contributed to his long and happy life ...

Jillian the Magnificent is getting married

Paul Daugherty, Cincinnati.com, 27th December 2013
Jillian Daugherty is no longer available. Male hearts sank worldwide Friday, when the estimable Ryan Mavriplis slid a diamond on my daughter’s finger. She’s taken now, boys. Ease away slowly ...

Golden girl
Kristen Alebakis, Bendigo Advertiser, 21st December 2013
For Tara Smith swimming is a chance to escape from the world’s distractions. It drowns out the noise. Stroke by stroke, kick by kick Tara is making strides in one of Australia’s most popular Olympic sports. Described by her coach Michele Berryman-Cooper as a competitive swimmer, Tara is always hungry to be the best she can be. Tara just returned home after winning gold at the Asia Pacific Special Olympic games.

Golden celebration for special olympic bowlers
Josh Fagan, Bendigo Advertiser, 25th December 2013
Francis Bush was a late-comer to tenpin bowling but he has struck gold in the sport. Francis took out a gold medal and a bronze medal at the Special Olympics Asia Pacific games in Newcastle. Fellow Bendigo athlete Sally Brockley-Moon claimed two bronze medals.The pair – who both took up bowling eight years ago – said the event was the highlight of their sporting careers ...

Having a disabled son taught me about love
Michael Sheather, Australian Womens Weekly (January 2014 issue), 19th December 2013
Abridged version of a longer interview in the current print/iPad edition of the Australian Women's Weekly.

Previous stories about people with Down syndrome and their families published by the Australian Womens Weekly:

• We refused to give up our beautiful baby with Down syndrome (2012)
• Beautiful faces of Down syndrome (2012)
• Meet the toddler who shoudn't be alive (2012)
• My daughter with Down syndrome changed my life (2011)

Weekend reading and viewing: 4th - 5th January 2014

After Leukemia, New Year’s Lipstick-Marked Beginnings

Cristina Nehring, Parenting - Motherlode (New York Times blog), 1st January 2014

... Why should I be sad that my girl did not sit up at so-and-so many months, or walk at a year and a half, or talk soon after? Dice listens, she laughs, she caresses; she seems extremely happy. All around us parents mutter about their kids growing up too fast. That is one problem we don’t have. We are taking our bloody good time ...

"Cheers to an awesome Mom"
Margaret Bender, The Ordinary Life of an Extraordinary Girl, 20th December 2013
After three days of decompression, Alex the college student has finally realized something I have been trying to tell her for 20 years…I am an awesome Mom!

Alternative therapies for kids with Down syndrome
Maureen Wallace, She Knows - Parenting, 20th December 2013
Medical experts and parents share tips for spotting potential vs. propaganda. Parents of kids with Down syndrome are a ripe audience for marketing ploys, and of course we'd do anything for our kids if we thought it would help.

A year to remember for Bath's face of Marks and Spencer Seb White
The Bath Chronicle, 24th December 2013
... Seb is now in Year 1 at St John’s RC Primary School, in Oldfield Park, and to his classmates he is different – not because he has Down’s Syndrome, but because he is famous ...

Oh Come, Oh Come

Dave Hingsburger, Rolling Around in My Head, 23rd December 2013

Yesterday afternoon we went to a small Christmas event in our neighbourhood ... This year, like last year, I saw a man with Down Syndrome attending the event along with his mother. She has aged a lot in the last year and is now using a manual chair, which he pushed with great care ... I heard an elderly woman say to her husband, "I don't know why she would bring him to something like this, it takes away from the spirit of the event." ... I silently screamed inside ... I rolled up and said, "I'm not going to make a scene, but I'm going to tell you that I think you are a bigot and a bully ...  if I hear you say that kind of thing one more time, there will be a scene."

What I think ... what I can say
Mohammed Ghonemi, Augmentative Communication Program at Boston Children's Hospital, 27th December 2013
So many families who come to the Augmentative Communication Program at Boston Children's Hospital from the Down Syndrome Program at Boston Children's Hospital know this scenario all too well but we thought the graphic could be a great reminder for extended family at holiday time to assume competence, even if it is not readily evident.

Parents of Children with Down Syndrome Share Their Hopes for 2014
Eliana Tardio, Living and Loving with Down Syndrome, 27th December 2013

... There are hundreds of thousands of families with children with special needs who decide to live with less in response to the lack of options for keeping up with a regular job. So I asked some of these parents what they hoped for in the new year ...

Wow, He Said
Dave Hingsburger, Rolling Around in My Head, 31st December 2013
... I was just in conversation with a man with Down Syndrome who was talking with me, struggling with the fact that he was attracted to, and had kissed, another man. He thought he was in love. He was aching with pain, it was all wrong, he was dirty and sinful ... I couldn't bear remembering the pain of feeling shamed for feeling loved ... So, I said, "You know I'm gay, right?"... We then chatted a bit and he learned that I lived a regular life, in a regular apartment and did regular things. I just did them with another man. He asked not a single question about sex, he just wanted to know about the pattern of our lives ...

Happy New Year !