Weekend reading and viewing: 21st - 22nd February 2015

Down syndrome should not be feared

David Perry, WCVB Boston, 18th February 2015

... Despite the good press and the outpouring of support, when one's own child is diagnosed with Down syndrome, far too many people react with a toxic combination of fear and terror.

Fortunately, there are antidotes: information, experts and community. Thanks to the power of the Internet and the commitment of activists, politicians and experts of all sorts, access to these antidotes has never been easier ...

There's a silver lining?
Force of Nature, 15th February 2015
... It was honestly within a split second, I asked simon a question and that was it, Seb had gone. The usual panic rose inside but we tried to stay calm knowing he couldn’t have gone far. But which way to turn in all this routes? ...

Sacrifice
Orange Juice Flavour Sky, 15th February 2015
... Having children changes your perception of love. Having a child with special needs takes it to the next level - not that I love Emily any more or any less than my other children. However, there are certain lessons of life which are learned when you have a child with special needs which we don’t necessarily learn with our other children. The journey towards learning these lessons and the love which accompanies our journey will look different for each and every one of us, so I don’t presume that everyone will have the same experience as me. However, there may well be echoes of a truth which resonate ...

Love doesn't discriminate
Enable Magazine, 13th February 2015
It’s Valentine’s Day tomorrow, and learning disability charity Mencap are celebrating matters of the heart with their video, featuring couples with learning disabilities and without – showcasing the fact that love doesn’t discriminate. In a guest blog, Lorainne Bellamy, who has a learning disability and works at Mencap (pictured below), talks about relationships and learning disability…

Down Syndrome Prenatal Testing Year in Review: 2014
Down Syndrome Prenatal Testing, 31st December 2014
The year 2014 mirrored the paradoxical trajectory of Down syndrome: just as things have never been better for individuals with Down syndrome, fewer are choosing to welcome children with Down syndrome into their families ...

Increasingly, Libraries Becoming More Inclusive
Jayna Omaye, Orlando Sentinel, 2nd February 2015
...Florida State University recently developed an online training tool that includes ways library staff, specifically those in rural areas, can communicate with and offer alternatives to visitors with autism ...

A personal story of choice and control
Lauren Hislop, My Choice Matters (blog), 6th February 2015

... I have asked my agency if I could meet the carers before they come to assist me. The agency informed me that, due to limited funding, they can't grant this request. So, 10 minutes after I initially meet a carer, I have to strip naked in front of them. In most situations somebody would really expect to be bought a drink prior to allowing someone else to see them naked!! In all honesty, I find this extremely dehumanising and disrespectful. It leaves me in an extremely vulnerable state ...

Optional, People or Optional People?

Leah Smith, The Disability Dialogue, February 2015

... (I) want to ensure that actors and actresses with disabilities have equal access to all the roles that their non-disabled peers have, especially those that specifically call for a disabled character; however, what seems more important in my mind is the story is being told about the person with a disability ...

Resources

Down Syndrome Education International's series of posts on education research, leading up to World Down Syndrome Day (21st March) has reached #16 this week, and it is an important, wide ranging one on the multiple impacts of commonly occurring sleep disorders on children with Down syndrome:

#16 Sleep problems are common and impact learning, development, health and family life Sleep is important for development and learning, behaviour and general health. Research suggests that sleep problems are common among young people with Down syndrome and are likely linked to cognitive difficulties and behaviour problems. Further research is needed to evaluate treatments and potential therapies ... see more here

Down Syndrome Education International has also held its first webinar for the year (see more here about future dates), and the slides and video from the presentation are now available online, here

Book Reading Checklist for Parents - Hanen Centre
This checklist is a useful quick reference for use at home.  It has two parts, How You Share Books, and How Your Child Participates in Book Reading, and prompts follow up on where to go next with your child's literacy activities at home.

The Hanen Centre supports parents and professionals to help young children develop the best possible early language and literacy skills. For more tips on making the most of book reading to build your child’s early literacy skills, go to www.hanen.org/literacy-at-home

Terms of reference: inquiry into violence, abuse and neglect

The terms of reference for the  recently announced Australian Senate Inquiry into violence, abuse and neglect against people with disability in institutional and residential settings have been released.

Submissions can be made online or by post.  Public hearing dates are not yet available.

Submissions should be received by 10 April 2015. The reporting date is 24 June 2015.

• Inquiry home page

Adult exercise class: Sydney (Cremorne)

Flyer as .pdf

News and commentary on the NDIS (29)

Recently, much attention has focused on formulating and implementing safeguards and prevention of abuse under the NDIS, including a consultation process now open on quality and safeguards:

NDIS Quality and Safeguarding Framework
Department of Social Services

The NDIS supports people with a permanent and significant disability that affects their ability to take part in everyday activities. The Scheme is being progressively rolled out in trial sites around Australia. 

Commonwealth, state and territory governments are developing a national approach to quality and safeguarding for the NDIS. 

We are looking at ways to make sure the NDIS provides quality supports, choice and control, and keeps people safe from harm. 

We want to hear what you think about the options for quality and safeguarding and how they will affect you ...

Govts review disability abuse checks

7 News/AAP, 16th February 2015

The federal and state governments could bring in a single system for checking the background of disability care workers. The recommendation is made in an issues paper released by disability ministers following a meeting in Melbourne on Monday ...

NDIA national disability plan useless without more funding, say unions
PM (ABC Radio), 12th February 2015
The ABC has obtained a draft copy of the National Disability Insurance Agency's proposed safeguards to prevent abuse and reduce the use of medication to restrain people who are violent. Disability advocates say it's a good start, but unions are warning safeguards will be useless unless the scheme has more money ...

Control and choices for people with intellectual disabilities
Life Matters, Radio National (ABC), 11 February 2015
At the heart of the National Disability Insurance Scheme is the aim to increase control and choice for people living with disabilities, but for people with profound or severe intellectual disabilities communicating their needs and desires is difficult. People can be left sitting for hours, waiting for something to happen in their day while their carers do things for them. But a different approach aims to change that. It’s called Person Centred Active Support and gives people greater agency over their own lives ...

Other NDIS matters

Information Linkages and Capacity Building

NSW Council for Intellectual Disability e-News, February 2015

The National Disability Insurance Agency (NDIA) has renamed ‘tier 2’ to ‘Information Linkages and Capacity Building’. Most people with intellectual disability will fall into this category and will make up the largest group of people accessing the NDIS.

NSW CID welcomes the NDIA’s initiative to undertake consultation, however, we are concerned that there is no mention of outreach for people who live on the fringe of society.
Without a very active process of outreach and relationship building, individuals living on the fringe are unlikely to see the potential benefit of the NDIS and/or seek assistance from it. NSW CID will be working on this issue to ensure that appropriate outreach is undertaken to ensure people living on the fringe obtain information and access the NDIS ...

Outdated job service ‘defeating the NDIS’

Rick Morton, The Australian, 10th February 2015

The National Disability Insur­ance Scheme is failing to work with the federal government’s antiquated $1 billion employment service and is being forced to push people into controversial sheltered workshops, says chief executive David Bowen ...

NDIS Step 1: Think and Prepare

Every Australian Counts, 6th February 2015

The NDIS is coming. Admittedly not fast enough for many of us but the fact that it will be rolled out across Australia in the next few years means now is a good time to start thinking about how to prepare. Every Australian Counts has talked to lots of people in the trial sites and asked them what they think people with disability need to do to get ready for the NDIS ...

The NDIS one year in: Experiences of carers in the Hunter trial site

Carers NSW, 7th October 2014
... an issues paper which summarises key issues arising for carers from the first year of the NSW trial of the National Disability Insurance Scheme (NDIS). The paper draws on research, consultation and policy analysis and intends to contribute to the ongoing refinement of NDIS design and implementation ...

Josiah: City to Surf runner, 2015

In an outstanding example of self-advocacy, and advocacy for others, Josiah is training for the 2015 City to Surf, on 9th August. 

He is fund-raising for Down Syndrome NSW, aiming for $5000 in sponsorship. From his Everyday Hero page:

I like to be fit and healthy and I like run with my family. 

One of the things Josiah really likes about all the exercise things he does is the social interaction. He will hi5 you as you run past him and say hi to anyone who he sees. 

People always enjoy seeing him working hard and they are inspired to work to their potential.

Josiah's fund-raising has kicked off already - you can support him here.

'We are worth the investment': Michael Sullivan

It was good to see this report in the weekend press, and highlighted widely on social media:

Budget cuts could silence voices for the disabled such as Our Voice's Michael Sullivan

Julia May, Sydney Morning Herald, 15th February 2015

Michael Sullivan has his own name for the NDIS, one that he believes better explains the scheme's purpose. Speaking at a disability conference earlier this month, he said a National Disability Insurance Scheme "sounds like something might go wrong". 

"How would that make you feel?" he asked the crowd at Geelong's Deakin University, to boos and groans. 

"I say the 'I' in NDIS should stand for 'investment'. We are worth the investment" ...

... Mr Sullivan has an intellectual disability ... and (is) chairman of the NSW Council for Intellectual Disabilities ...

If your speech therapist is not a good fit ...

Jennifer Bekins' blog post might help you to work through the sometimes difficult process of recognising when therapy is not going well, and a change of personnel might be a solution. Of course it's okay to take a break, too, or just to stop if that will work better for your child and family - sometimes we just need someone else to point it out, or reinforce the conclusions we've reached ourselves:

Changing Therapists
Jennifer Bekins, Talk - Down Syndrome, 6th February 2015

... I’ve had a number of people ask me recently, “How do I know if it’s time to change therapists?” 

This is a loaded question with lots to consider. I’m going to base the initial question of switching therapists on the assumption: There is someone your child can switch to ... It’s okay to change.

Weekend reading and viewing: 14th - 15th February 2015

When My 2-Year-Old With Down Syndrome Met a Grown Up Like Him at the Hair Salon

Anne Grunsted, The Mighty, 7th February 2015

... I didn’t need this mother’s empathy for what Bobby had already been through, but I needed her hope for his future. She knew, and she willingly obliged, painting me a picture of her son’s good life ...

Proudest day of my little girl's life was ruined for us

Brendan O'Connor, The Irish Independent, 8th February 2015

... If you met Mary you would notice the fact that she has a disability ... You certainly wouldn't need to get her to jump through hoops and ask her to prove that there are things she can't do. You wouldn't need to ask me and her mother intrusive questions. You would get it.
But the State doesn't get it. They need to humiliate Mary and her family in order to ascertain whether she is officially disabled enough to merit some extra help. They need to label her, and we have to play along with this labelling. It's disgusting really ...

When a Little Boy With Down Syndrome Came Up to My Daughter

Amy Fields, The Mighty, 3rd February 2015

... You opened your mouth to apologize to me. But then you heard laughter and turned around to see your son tickling my daughter. In her wheelchair. Two children. One with cerebral palsy and one with Down syndrome. Your frown turned into a smile as you recognized another invisible solider ...

Confessions of a Special Needs Parent: Please Don’t Praise Your Kid for Playing With Mine

Ellen Stumbo, Hope and Encouragement for the Special Needs Parent, 13th January 2015

... I want to encourage that friendship, I think you do too.  But ... When you say your kid is great because he/she chose to play with mine, at that very moment, your child went from seeing just another friend, to seeing kids like mine as different, as someone defined by their disability, as someone who is somehow flawed, and only an exceptional person plays with them or becomes their friend. I know that is not what you are trying to communicate, I know that, but unfortunately, it does ...

An Open Letter to Jules Anderson

Samantha Connor, The Stringer, 12th February 2015

... You were speaking up for every single Australian man, woman and child living in residential care or an institutionalised setting today. You were speaking up for every woman who was not believed when they told others, every man and child whose voice was not heard.

You spoke up with dignity, clarity and determination that this would never ever again happen to any other person with a disability ...

... As a woman with a disability and someone who cares about the safety and rights of others with disability – thank you, Jules. Thank you from all of us.

Regarding Leo ... and others

You might have seen reports online of a father taking his newborn son, Leo, who has Down syndrome, from Armenia, to New Zealand after his mother was said to have 'abandoned' him soon after birth. On the strength of initial online reports, outrage followed and an online funding page attracted much more money than was requested by Leo's father. Further consideration and information has led to some more thoughtful responses to the broader range of issues raised.

The first comment on our Facebook page's link to the story (7th February) points out that (as have others) ...

I am happy for this devoted daddy. However... if he had of been a woman with the husband leaving this would not have made media, and that beautiful baby boy probably would have not ended up with such a money gift. Not suggesting he does not deserve admiration ... it's just that there is an imbalance here that does not pay credit to the thousands of single mothers who are doing the same as him ...

Each of these blog posts was written by a parent or sibling of someone with Down syndrome:

Leo Forrest, Samuel and Ruzan

David Perry, How Did We Get Into This Mess? 10th February 2015

... So here's one conclusion: the internet is a thoroughly lousy place to figure out the intricacies of a relationship, especially one in crisis, from halfway around the world.
We are biased, flawed, creatures, too prone to leap to the heart-rending story and, in many cases, to lay our money down based on partial information ...

Leo, abandonment, and life with Down syndrome in some places

Mark Leach, Down Syndrome Prenatal Testing, 11th February 2015

... It was only through investigative reporting and progressive social policies to de-institutionalize and move individuals with disabilities back into the community that the expectation for a life with Down syndrome could be seen with more hope by parents. They finally had examples of what that life could be like from their neighbor, church member, child’s classmate, and employees at their local stores.
But these changes will not happen in countries like Armenia on their own ... donations would be better spent supporting the families to accept their children, rather than continuing the problem of institutionalization by funding the orphanages.

I’m Outraged! Now What? Thoughts on Baby with Down Syndrome “Abandoned” by Mother

Jennifer Bekins, Talk - Down Syndrome, 8th February 2015

When Down syndrome (DS) makes my Facebook trending sidebar, I click the link. By now you’ve likely seen the article on Sam Forrest heroically taking his son when his wife allegedly abandoned him. And the internet exploded with outrage followed by the desire to “do something to help.” As of this morning Forrest’s Go Fund Me account has raised over 475K. Please let that sit for a moment. Complete strangers who heard the initial story of Forrest’s desire to move his child to his native New Zealand following resulted in nearly half a million dollars in funding in 12 days.Seriously. Red flags were everywhere ...

Father of Baby with Down Syndrome Raises $500,000 through Gofundme

Stephanie Meredith (guest blogger), Thin Places, 9th February 2015

... Methodically shifting social paradigms with hard work is not as sexy as one gripping story, but it’s the most effective way to improve conditions internationally — by working collaboratively with individuals within these nations and empowering families there. While I understand that donations roll in for individual cases like the Forrest family, and I’m genuinely happy Leo will get the support he needs, it’s frustrating that the public is much less likely to support these coordinated efforts that help many more people ...

An Open Letter to Baby Leo’s Dad…from a “Down syndrome Mom”

Meriah Nichols, Medium.com, 12th February 2015

... The one thing that I beg you not to do is to donate to Armenian orphanages. Doing so will help to perpetuate the very institutionalism that we seek to change ... I urge you to keep a firm eye on the conditions within Armenia and Eastern Europe for children with disabilities, the very conditions that caused you to leave ...

Resources

Children’s Books Honored For Disability Storylines

Michelle Diament, Disability Scoop, 5th February 2015
The winners of this year’s Schneider Family Book Awards include tales of a boy who stutters, a girl with autism and young adults with intellectual disabilities during transition.

The Schneider awards are presented annually by the American Library Association to authors or illustrators for the “artistic expression of the disability experience.” One award is given for works aimed at each of three audiences — kids up to age 8, those ages 9 to 13 and teens.

Fasten Your Seatbelt - short videos
A series of very short videos featuring Brian Skotko and Sue Levine  discussing single topics from their well loved book for siblings, could be useful for discussion with siblings, about one thing at a time.




These resources are designed specifically for professional support workers:

• Every Moment Has Potential

' ... an online learning resource developed specifically for disability support workers. The resource provides an introduction to Person Centred Active Support - a way of working that enables everyone, no matter what their level of intellectual or physical disability, to make choices and participate in meaningful activities and social relationships.'

Produced as a collaboration between Greystanes Disability Services and the Living with Disability Research Centre at La Trobe University, funded by the Australian Government Department of Industry.

Service, Support and Success

The first two 2015 issues of Service, Support and Success, a valuable Canadian newsletter for direct support workers, are now freely available online:

The View from the Other Side of Care 

Dave Hingsburger, Service, Support and Success, Vol 4, issue 1, January 2015
... As someone who is now a care recipient, I’ve learned a lot about what it is to be on the other side of another’s Paid care, and as much as we say ‘we work for people with disabilities’... when receiving care, it never, ever feels that way ... There are those, however, who provide care in such a way that, while I may not feel like the employer, I don’t feel like the lesser, I don’t feel like a passive participant in the process.

I’m going to list a few of the things that those who help me, in a helpful way, leave me feeling simply helped and never lessened ...

Families and Staff: How to move from competing to complementary perspectives

Yona Lunsky, Service, Support and Success, Vol 4, issue 2, February 2015
... Sometimes when we have an interaction that is difficult, we put it on the person, especially when we feel like we are being criticized by them. But chances are, if the family is giving us a hard time, they are having a hard time ...

Miscellany

Airline Carrier Announces New Policy for Disabled Passengers

ProBono News Australia, 29th January 2015
Australian airline, Virgin Australia, has made significant changes to its policies to make it easier for people with a disability to access lower airfares, in a move welcomed by the Public Interest Advocacy Centre. 

As part of the change, people travelling with a carer can now make flight bookings by phone up to 331 days in advance at the internet discount rate, without the requirement to enter their carer’s name at the time of booking ...

NSW Companion Card
... has posted a reminder on its Facebook page, that the card is accepted for carer tickets for Sydney's Royal Easter Show (24 March – 8 April 2015)

Senate votes unanimously for a national inquiry into the abuse of disabled people

Today's Senate vote has been welcomed by disability advocates, both individuals and organisations:

Senate Votes on Disability Abuse Inquiry
ProBono News Australia, 11th February 2015

The Australian Senate has voted unanimously to hold a national inquiry into the abuse of disabled people in institutional and residential settings. 

Disability advocates, including abuse victim Juliette Anderson, had spent Wednesday campaigning for Senators to support the motion for an inquiry.
At around 4pm on Wednesday every Senator present voted in favour of the national inquiry ... 

Greens Senator Rachel Siewert, who moved the motion, welcomed the outcome of the vote ... “People with disability and organisations representing them can breathe a sigh of relief that there is finally an inquiry that will address the systemic issue of abuse of people with disability in care at a national level. This inquiry is just one step to ensuring that people with disability can feel safe day to day whilst accessing essential services" ...

• The Four Corners (ABC TV) report from 24th November 2014 that instigated calls for the national inquiry can be seen here.

Health news

You will notice that several of these news items are reprinted from the NSW Council of Intellectual Disability's monthly E-news, which you can subscribe to (without charge), here. NSW CID has an excellent record of advocacy for quality health care for people with intellectual disability, and regularly includes health information on the E-news:

NSW CID E-news is a monthly email news bulletin to update NSW Council for Intellectual Disability (NSW CID) members and supporters of recent NSW CID activities. It contains news, events and information relevant to people with intellectual disability and their advocates.

eHealth records for people with intellectual disability 

NSW CID e-news, January 2015

People with intellectual disability can register to have an eHealth record so that their health information is on a Commonwealth Government website. With their approval, doctors and hospitals can look at a person's eHealth record. NSW CID supports eHealth records which can help doctors to provide the best treatment and help you to be healthy. 

People with intellectual disability should be given support to make their own decisions about having an eHealth record. However, even with good support, some people will not understand the eHealth records process. Therefore, closely involved supporters like family members can then apply to be an ‘authorised representative’ for the person to make decisions about registration and management of the eHealth record.

For more information and to register for an eHealth record click here.

Cochlear Implants Give Young Boy with Down Syndrome a New Lease on Life at Lucile Packard Children’s Hospital Stanford
Business Wire, 4th February 2015
... “Traditionally, developmentally delayed patients haven’t been seen as ideal candidates for cochlear implants,” said Chang, associate professor of otolaryngology - Head and Neck Surgery at the Stanford University School of Medicine. “The electrical stimuli delivered by the implants have no resemblance to regular hearing. The brain has to adapt itself to learn the electrical patterns. Someone who is developmentally delayed isn’t going to progress as fast as a child who is developing normally. However, just because it’s a lot tougher to rehabilitate a child with developmental delay doesn’t mean they won’t benefit from it” ...

Addressing the mental health needs of children with an intellectual disability

Monash University, 28th January 2015

MIND-IT, a research team supported by the Monash Warwick Alliance, is working to improve the wellbeing of children and adolescents with intellectual disabilities or autism, and their families ... 

... “Many families are coping well, but some are not. Research findings show that when families struggle to cope this is mainly due to issues associated with a child’s disability rather than the nature or severity of the disability itself. Such associated difficulties include access to diagnosis and treatment if the child has additional behavioural and emotional issues, and a lack of support for parents. So the good news is many of the issues causing high levels of stress in families can be addressed by better support,” Professor Hastings said ...

Congratulations to Julian Trollor
NSW CID e-news, January 2015

Dr Julian Trollor is the Chair in intellectual disability mental health at University of NSW. He has been promoted to Professor. This is a well deserved recognition of the great work being done by Julian and his team to improve the mental health of people with intellectual disability. From the start, Julian has been keen to work closely with NSW CID and has seen how crucial it is to hear the direct voice of people with intellectual disability. For example, Julian employs people with intellectual disability to co-deliver education sessions for mental health professionals.

NSW mental health plan has no action for people with intellectual disability NSW CID e-news, January 2015

NSW CID is very alarmed by the lack of specific action on the mental health of people with intellectual disability in the NSW Government’s response to its Mental Health Commission’s Strategic Plan. Click here to view the plan. 

The Mental Health Commission set out clearly the fundamental problems facing people with intellectual disability in obtaining mental health care and provided practical steps for action. The Commission’s approach is in line with the outcomes from the National Roundtable on the Mental Healthof People with Intellectual Disability which NSW CID convened in 2013.

Mental Health Minister Guy Rowell stated that the Commission’s Strategic Plan “provides a 10 year roadmap for strengthening mental health care in NSW”. However, there is no specific provision for people with intellectual disability in the initiatives the government has announced. 

NSW CID is seeking a meeting with the Minister.

Kosciuszko to Coogee: fundraising cycling event

Kosciuszko to Coogee, is an inspired fundraising idea to help raise money for the work of Down Syndrome NSW. Created by Lance Mitchell it starts on 21st March 2015 and involves 16 days of cycling from Mt Kosciuszko all the way to Coogee finishing on the 5th April.

You can donate to support Down Syndrome NSW or follow Lance’s progress as he trains in preparation:

• Everyday Hero page for this event 

• Facebook page for this event

Free webinars from Down Syndrome Education International: 2015 program starts this week

Image: DSE International

Down Syndrome Education International's 2015 program of free webinars on reading and language interventions begin this week (from 11th February UK time).The webinars are specifically designed for participants ...

"... to find out more about effective reading instruction for children with Down syndrome - a series of free webinars introducing our reading and language intervention designed for school aged children with Down syndrome, and helping teachers and teaching assistants put it into practice. These live online events are available at various times to suit participants around the world and are free of charge".

• About the intervention. Click on the title of an individual event for full details and links to register
• Webinar times and registration Note that you can select a timezone to check when an event will be at a convenient time for your location.

First Arts + Disability Expo: Carriageworks, September

Accessible Arts is proud to announce Australia's inaugural Arts + Disability Expo, to take place on the 18 and 19 September 2015 at Carriageworks, Sydney.

This new initiative from Accessible Arts follows on from their successful establishment of the biennial Arts Activated Conference, the fourth and most successful of which took place just recently, in October 2014.

The Expo has already obtained the Lifetime Care And Support Authority as its Key Partner, and now offers the opportunity for other organisations and groups within the arts and disability sector to directly connect with their market.

• Free for the general public to attend in this first year
• Unique opportunity to showcase products and services available in the arts and disability sector nationally
• Features exhibitor stands, interactive demonstrations, gallery space, discussions and live performances
• Reach target audiences and brand objectives through a range of sponsorship and exhibitor options.

More information will be available in the coming months at www.aarts.net.au/expo

View the Sponsorship and Expo Prospectus 

Arts + Disability Expo 2015_Prospectus  (PDF format)
Arts + Disability Expo 2015_Plain Text Prospectus (plain text word format)

To discuss your involvement in the Expo, contact:

Gemma Collocott, Strategic Projects Manager at gcollocott@aarts.net.au on  +61 2 9251 6499 ext.110

Paul Baylis, Development Manager at pbaylis@aarts.net.au  on +61 2 9251 6499 ext.103

Concerns about representation of people with intellectual disability in new national alliance

Assistant Minister for Social Service, Senator Mitch Fifield's announcement of de-funding and non-funding for many community and national organisations (including Down Syndrome Australia) just before Christmas 2014 raised a good deal of criticism. Now, his announcement of funding for a selective Cross-Disability Alliance on Friday (6th February) has not met with universal approval either:

Australian Cross Disability Alliance - a voice for all people with disability

Media release, Australian Cross Disability Alliance, 6th February 2015

Five national, cross disability organisations welcome the funding provided by the Australian Government to form the Australian Cross Disability Alliance that will provide a voice for the 4.2 million Australians with disability. 

The members of the Australian Cross Disability Alliance are:

• Children with Disability Australia (CDA)
• First Peoples Disability Network Australia (FPDN)
• National Ethnic Disability Alliance (NEDA)
• People with Disability Australia (PWDA)
• Women With Disabilities Australia (WWDA)

Commenting on the cross disability model, PWDA President Mr Craig Wallace said, “The Cross Disability Alliance provides a modern, coherent and more comprehensive national voice for people with disability. This means that people with any kind of disability can directly join, elect and hold accountable the peaks who represent them to Government. We are at a crossroad for disability rights and it is right for us to come together at this vital time. We commit to working hard to provide all Australians with a disability with the voice we deserve.” ... read the full media release from the Australian Cross Disability Alliance here

Responses from national organisations with concerns about representation of people with intellectual disabiliity:

Down Syndrome Australia is an active member of the Australian Federation of Disability Organisations (AFDO) and supports their call for the federal government to provide more funding to disability groups so they can offer specialist advocacy services on behalf of ALL Australians with disabilities.There is a real risk that Australians with sensory and/or intellectual disabilities will be left behind unless the federal government provides more funding.

Join us in spreading the word.

Join the campaign to Save our Peaks.

Read the statement from AFDO on behalf of a consortium of 10 disability organisations that are currently at risk:

Disability Australia consortium calls for unity among people with disability organisations
A statement from the Disability Australia consortium

Today (6th February 2015) the Assistant Minister for Social Services, Minister Fifield, issued a statement announcing funding for a cross disability alliance of five people with disability organisations, stating that the new alliance would represent ‘all people with disability’ and noting alignment with a social model of disability and the United Nations Convention on the Rights of People with Disabilities (UNCRPD). 

This statement is divisive and misleading. Whilst we welcome funding to the five organisations for people with disability, they do not represent our 200,000 constituents. The UNCRPD makes it clear that people with disability should freely choose their own representatives - it is not the role of any government to tell people with disability who should represent us. 

To you, our members, we will continue to represent your interest to the best of our ability. 

Our organisations know that people with disability relate to people who have had similar life experiences. We know that people who are blind best learn how to become empowered, confident and independent by being around people who have developed these skills. Many people who are Deaf like to be represented by organisations that understand Auslan and Deaf culture. 

There is an important role to be played by both population based organisations as well as people with disability organisations who provide specialist information, advocacy and peer support to people who are newly diagnosed with disability, people who acquire a disability and families. 

The divisive decision by the government to defund seven people with disability organisations and not grant funding to a further four people with disability organisations, including autism which is one of the fastest growing disabilities, announced before Christmas is an unprecedented attack on people with disability organisations in Australia. 

Our organisations, with over 200 years of combined experience, have been integral to the successful implementation of the National Disability Insurance Scheme, the development of the UNCRPD, captioning, accessible voting for people who are blind or vision impaired and the development of early intervention to support children with autism and Down syndrome. Without our organisations, these successes may not have come to pass. These successes have made fundamental differences to the lives of people with disability. 

We have and will continue to be representative and effective champions of and for people with disability and to be a resource to our members now and into the future. Our organisations will continue to drive change in the best interests of people with disability without fear or favour. 

To our constituents, we look forward to representing you, as the national independent voice of people with disability in Australia. 

Please direct all media enquiries to Mr Matthew Wright, Australian Federation of Disability Organisations (AFDO) on 0428 608 861. 

Our Voice Matters

Inclusion Australia, 6th February 2015

Inclusion Australia responds to DSS $1.5m cut to support and services for people with intellectual disability. 

Inclusion Australia (NCID) is the peak body for people with intellectual disability and their families. Inclusion Australia has represented people with intellectual disability for over 60 years with the support of thousands of people and organisations. 

In December last year the Department of Social Services decided that the specific voice of people with intellectual disability and their families is not important. Rather, they have decided that people with intellectual disability and their families can be represented by people without disabilities or by people who have a physical or sensory disability. The Board of Inclusion Australia deplores this decision as we believe it will deny people with intellectual disability and their families the opportunity to inform and shape the direction of disability policy and supports, including the National Disability Insurance Scheme ... read the full response here

Sample of media responses so far ...

Former commissioner says disability cuts breach UN convention

Julia May, The Age, 7th February 2015

The Federal Government's cuts to the disability sector are a "catastrophic" blow and breach the United Nations convention on the rights of disabled people, advocacy groups and one of the architects of the convention says ...

New alliance offers voice to disabled

SBS News, 6th February 2015

People with disabilities will be represented in government policy-making by five advocacy groups, under new funding arrangements.

Dozens of community service groups, including 10 peak disability organisations, learnt just before Christmas they would no longer receive federal government contracts from June 30, 2015.

Assistant Social Services Minister Mitch Fifield on Friday announced a new cross-disability alliance had won a competitive tender for two years of funding to advise government on policy ...
... It was the sector's calls for reform that led to the government running the competitive process for the first time, he said.

However, those groups which missed out on funding are likely to be disappointed with the result.

Responses are also being provided on social media, especially on Twitter - search for 'cross disability alliance'.

Weekend reading and viewing: 7th - 8th February 2015

My Son Is Not A Diagnosis

Above All Else, 31st January 2015
I've heard it spoken many times from parents of a child with Down syndrome, "I wish I knew then what I know now." These are parents who've gotten past the first couple of years and many of the initial unknowns since they first received the diagnosis ...


Climbing A Mountain of Disability Stigma in the Media

Emily Ladau, The Disability Dialogue, 30th January 2015

"Why must our stories be forced into a narrative mold of overcoming adversity and stigma, when in fact it is people harboring adverse and stigmatizing beliefs that should be overcoming them?"

Disability is not a Niche - Writing about Disability and its Challenges

David Perry, How Did We Get Into This Mess? 5th February 2015
One of my frustrations with disability writing is that it's often perceived as a niche, and a small one at that. Instead, it's us. All of us. Not all of us at once. Not all of us now. But disability is a fundamental component of the human condition. And of course disability is also diversity, rich in its various forms. Studying disability forces us to shed our narrow normative ideas of what normal is and isn't. My maxim: Disability is not a niche ...

Our freedom of speech comes at a price

Callum MacKinnon, The Scotsman, 5th February 2015

... Freedom of speech is a cornerstone of a fair and democratic society but it is one that is loaded with responsibility ...

What Mary said

Dave Hingsburger, Rolling Around in My Head, 3rd February 2015
... When you express that you love your child, as is, the sentiment is often, 'Your child is lucky to have a parent like you.' A child is lucky, LUCKY, to have a parent that loves them? Yeah, luck ...

Belonging Matters is the website of a Victorian organisation of the same name. It provides resources such as 'Talks that Matter' - videos of their workshops, on a wide range of topics (free). Other resources are available to buy.

Belonging Matters aims to inspire people with a disability, their families and allies to enable people with a disability to have opportunities and pathways typical of other citizens in the community - lives that are personally fulfilling, unique, socially inclusive and empowering.

"... we don't do it with slick marketing campaigns, we don't do it by hiding people with disability away in special schools or in segregated work places, we don't do it by using our prison systems as alternative accommodations for people with intellectual or cognitive disability and people with mental illness. We do equality and inclusion by actually doing it!" Graeme Innes, Quote of the Month for January 2015, on Belonging Matters

Bus Stop Films You Tube Channel
Award winning Bus Stop Films continues to add films to its new You Tube Channel.  The most recent is Frances and Annie, made in 2009, for which Tracie Sammut won a best actress award for her portrayal of Annie at Russia's Kinofest in Novemebr 2014.

Talking about employment

Several aspects of employment and people with disabilities continue to be covered regularly in the media (it is being discussed in some depth on national radio as this list is being compiled), bringing ongoing anomalies to the attention of the community - how much headway are we making? Not every one of these links addresses the employment of people with intellectual disability directly, there are common considerations of stigma, perceptions, education, and provision of support, among others:

Industrial matters:

10,000 workers with disabilities paid below minimum wage: when will they get justice?

Josh Bornstein, The Guardian, 4th February 2015
... According to the federal and high courts, these employees have been illegally underpaid in breach of the Disability Discrimination Act for more than a decade. They are entitled to be compensated by the federal government. Instead, the government has done everything it can to block that effort ...

Disability wage tool defeated in Senate as Jacqui Lambie votes against Palmer United Party

The Age, 25th November 2014
The federal government has suffered a surprise defeat on a temporary scheme to determine future wages for intellectually disabled Australians ...

Education matters:

Study Finds Postsecondary Programs Boost Outcomes

Shaum Heasley, Disability Scoop, 20th January 2015
Individuals with intellectual disabilities who attend postsecondary programs are finding greater success in the job market than those who do not pursue further education, a new study suggests.

Graduates of postsecondary programs reported higher rates of employment since completing high school, according to findings published online this month in the Journal of Intellectual Disabilities. The research offers support for a growing number of programs at colleges and universities specifically geared toward young adults with developmental disabilities ...

• Abstract available online

Participation matters:

Work participation among people with disability lower than 20 years ago

Paul McGrath, PM (ABC Radio), 5th February 2015

Official figures released today have a confirmed a trend that disability groups have been warning about for years. Work force participation among people with disability has actually declined over the past two decades. And today's Bureau of Statistics data show a third of those who have found jobs aren't working as many hours as they'd like ...

Ready for work but is work ready for me?

Thea Calzoni, Every Australian Counts, 3rd February 2015

... Social acceptance is related to the role a person is given in the workplace. Why, with all her performance skills and ability with words, has Pippa not been welcomed into a ‘front of house’ job? So far her paid work has been out the back – in fast food kitchens or shelf stacking – never in customer service. This is a common experience of people with disability, regardless of their many abilities ...

Technology the key to changing the culture of disability
Lisa Visentin, Sydney Morning Herald, 29th January 2015

Chief among (the Able Movement's) aims is to showcase the inherent employment potential of people with disabilities, and to shift the perception away from seeing the employed person with a disability as merely a beneficiary of an employer's sense of social responsibility.

Disability advocates say Federal Government employment policies not working

Norman Hermant, AM (ABC radio), 20th January 2015

Advocates say despite years of Federal Government policies designed to boost employment, it is as hard as ever for people with a disability to enter the workforce.

The number of people living with a disability working for the Australian Public Service fell from 5 per cent in 1999 to just 3 per cent last year. The latest figure puts Australia behind countries such as Canada, with 5.8 per cent of its public service identifying as living with a disability, and the UK, where the figure is 8.8 per cent ...

We need to talk about disability

James Adonis, The Age, November 21, 2014
... Some people with disability opt out of the workforce because they have no choice; their disability is so severe it renders them unable to work. Many more, however, want to be employed but feel they can’t apply for jobs because of the stigma permeating many workplaces ...
Conversations That Matter: Improving Employment Opportunities

Panel Discussion hosted by Deakin University, 14th October 2014

Billionaire Urges Disability Hiring

Michele Diament, Disability Scoop, 8th October 2014

One of the richest people in the world is calling on employers to join him in hiring people with intellectual and developmental disabilities ...

It's T 4321 time again...

T4321 ('Tea for Trisomy 21) is held throughout the month of March to celebrate World Down Syndrome Day and the lives and achievements of people with Down syndrome.

This year is extra special, as Down Syndrome NSW is turning 35! So this year, our celebrations are going to be bigger, bolder and better than ever before!

To celebrate the occasion and to raise funds for the state-wide library service offered by Down Syndrome NSW (DS NSW) we have three different options available:

DIY Events - hold your own fundraising and awareness events with friends, family and work colleagues - see below for some great suggestions! 

Saturday 21 March - Family Fun Day - come along and enjoy a day of carnival style fun at Lollipops Playland Parramatta. 

Saturday 21 March - High Tea - celebrate in style with 'Afternoon Tea with Wedgewood' at The Langham, Sydney

Considering a DIY event?

The concept is simple –

Hold an event that suits you - make it as big or small as you like, at any time during March.
Go to our T4321 website and set up a fundraising page (it will only take you 5 minutes!)
Invite your friends, family, work colleagues, neighbours, local business owners, librarian, dietician, favourite cat, great Aunt Mildred etc...... to come along. 

Tell everyone why you're having the event (to raise money for Down Syndrome NSW and the lives and achievements of people with Down syndrome). Don't be shy - if people know from the beginning what it's all about, they are more likely to contribute and participate. 

Have FUN!

If you can't hold or attend an event and would still like to donate, simply click HERE.

We'll be sending out more information about our Family Fun Day and High Tea event sin the coming weeks, so keep checking back and make sure you've already put Saturday 21 March in your calendar!

We are here to help. If you have any questions, need ideas or want more information, then contact Sarah or Ben at Down Syndrome NSW on 02 9841 4444 or events@dsanw.org.au

Resources

New library title:

Can I tell you about Dyspraxia?A guide for friends, family and professionals
Maureen Boon
Told as a first person narrative account of Marco, a school-boy with Dyspraxia. The short book gives useful insights into what it feels like to have the condition.

Members' libraryThe Down Syndrome NSW library catalogue is available to view here.  

• To contact the librarian, ph. 9841 4410, or email library@dsansw.org.au

Down Syndrome Research Foundation App Store
A list of DSRF's most highly recommended apps for individuals with Down syndrome; a portion of all proceeds of sales generated through these links will support DSRF. DSRF is located in Vancouver, Canada.

5 Ways to Teach an Older Child with Special Needs about Hygiene

Becca Eisenberg, Friendship Circle, 3rd February 2015
Many older children, teenagers, and young adults are challenged with how to maintain good hygiene and have a decreased awareness. These individuals often rely on the adults in their life to help remind and guide them to wash hands, shower every day, shampoo hair, etc ... Here are five ways to increase awareness and help teach improved hygiene skills with older children, teenagers and young adults with special needs.
Dual Diagnosis ASC / DS

The Down's Syndrome Association in London has established a new blog for families with a member with dual diagnosis Autism Spectrum Condition/Down’s syndrome (ASC/DS)
There will be a new blog piece every month.

Study on how people with communication disabilities use Twitter

A new Australian study into the ways in which people with communication disabilities use the social media platform Twitter for information exchange has been announced.

The study, being run by the University of Newcastle, Australia, but also involving researchers from Deakin University and the Australian National University, has several research goals:

• To discover how Twitter is currently used by people with communication disabilities and the nature and extent of any problems experienced in learning to use Twitter.

• To test an online training module for people with severe physical and communication disabilities to access and use Twitter to exchange information.

• To evaluate the use of Twitter by people with severe physical and communication disabilities.

If you want more information about the study, or wish to participate, you can email Dr. Bronwyn Hemsley at the University of Newcastle or phone on (02) 4921 7352.

More information at Media Access Australia

2015 education conference: program and registration details

• Full program details for our 2015 education conference are now available online, and to download and print as a .pdf document 

• Detailed brochure and registration form

• Early bird registration extended to Monday 16th February

This is an essential conference for anyone working with a student with Down syndrome.

The conference aims to equip attendees with a toolkit of practical strategies, information and resources to best support students in various educational contexts. The topics addressed are also relevant for teachers working with students with development delay, intellectual disability and other chromosomal disorders.

Summer ...

Latest addition to events pages

Down Syndrome NSW events:

Golf Day Tee Up! 2015
We have moved our Golf Day to Spring 2015. The Golf day will now be held to coincide with Father’s Day! This will be our first fathers event for some time. We look forward to seeing you out on the course.

For further information on this event, please contact Ben Chinnock at ben.chinnock@dsansw.org.au or on 0402 503 885.


Other events:
These links provide information about events run by organisations other than Down Syndrome NSW that might be of interest to people with Down syndrome, their families, carers and the professionals who support them. They have been added to our 'Other 2015 events' page for ease of reference.

Heartbreak and Beauty - film premier
Bus Stop Films is premiering a new short film Heartbreak and Beauty at the Chauvel Theatre, Paddington (Sydney) on 21 February 2015.

Created with and starring 12 young people living with intellectual disability, the film follows their experiences of love, loss and hope, through poetry, visual metaphor and dance. Bus Stop’s mission is to create an inclusive film and television industry, where people of all backgrounds can contribute to Australia’s creative and economic landscape.

Heartbreak and Beauty is produced in partnership with Sydney Community College and follows a run of success for Bus Stop with their last project The Interviewer receiving international critical acclaim, winning over 30 awards. Both short films will be shown on the night.

To attend the screening contact Samuel Russin 0450 032 515 hello@busstopfilms.com.au

Drama Creative Confidence Class
Down Syndrome NSW member Jane Gilsenan was part of the team responsible for the fabulously successful Show Off showcase and workshops at Parramatta Riverside last November. Jane is an accomplished drama teacher who has recently started a mixed ability drama class for primary school children, from Kindy to Year 6, in the Castle Hill area. Contact Jane directly for more information:
0468 302 073 or www.dramacc.com.au
The class is at 3.45pm on Thursdays.

Datables Dance
Relationships and Private Stuff - a singles dance for people with disability. Contact: Liz Dore 0416 122 634 or emailliz@relationshipsandprivatestuff.com
Thursday 12 February 2015 - Burwood

Ideas for Self Directing Supports
Resourcing Families - Individualised funding is becoming available to people with disability through the NSW Living Life My Way framework and the roll out of the National Disability Insurance Scheme (NDIS). If you are asking What is self direction? How does it work? Who can help me? Then come along to this workshop
Thursday 26th March 2015 - Sydney

News and commentary on the NDIS (28)

NDIS Newsletter, January 2015

7 issues we can’t afford to let slip

EveryAustralian Counts, 13th January 2015

2015 is going to be a big year for the roll out of the NDIS. There are a number of important decisions that the National Disability Insurance Agency (NDIA) and the governments will need to make before the full roll out commences. The State of the Sector report that was released by NDS lists their seven top issues that need to be addressed this year. Here are the issues that National Disability Services (NDS) wants action on ...

Govts urged to give intellectually disabled people more say in decision-making in 2015

Samantha Donovan, AM (ABC Radio), 16th January 2015

... There's a great emphasis in the NDIS on the lived experience of disability, but predominantly that's the lived experience of physical or sensory disability or being a parent of somebody with a disability or a family member.

There are no people with intellectual disabilities on the advisory board or on the board itself and they're 60 to 70 per cent of the people that are going to be using the NDIS ...
Four lessons the NDIS must heed to avoid a ‘pink batts’ disaster
Eric Windholz, The Conversation, 16th December 2015

... Supply-side reforms – the doubling of the provider market, changes in its mix, and the development of a national approach to quality assurance and provider oversight – have received comparatively little attention. Yet it is on the supply side that much of the NDIS’s risk exists ...

Down syndrome organisations funded for NDIS capacity building project
COAG Disability Reform Council - Communiqué

Senator the Hon Mitch Fifield, Assistant Minister for Social Services, 12th December 2014

http://www.centreforwelfarereform.org/library/type/text/proinnovation-ndis.html

Pro-Innovation NDIS

Simon Duffy, Centre for Welfare Reform (UK), December 2015
Australia has embarked on the most important international initiative to make disability rights real. If the National Disability Insurance Scheme (NDIS) is successful it will be a world-leading example of how a country can respect and value its citizens with disabilities. It would set the bar high for so many other countries around the world ...

Intellectual disability groups believe the NDIS is unfairly geared to the physically disabled's needsJulia May, Brisbane Times, 13th December 2014
Advocates of people with intellectual disabilities, who make up more than two-thirds of future users of the National Disability Insurance Scheme, fear they are being disproportionately shut out from its services, writes Julia May ...

NDIS Rights - website
The NDIS Rights Fact Sheets on this website have been developed by Fitzroy Legal Service, Hobart Community Legal Service and Redfern Legal Centre after receiving a grant through the Commonwealth Attorney-General Department’s Human Rights Framework – Education Grants. The fact sheets have been developed to address community need for rights-based legal information when accessing the NDIS and the various agencies involved with the NDIS.

The Fact Sheets are intended to provide basic information about what rights a person has under the NDIS, and what they can do if they feel their rights are not being recognised. The Fact Sheets are meant to provide only general information. They are not meant to replace legal advice or advocacy ...

Mixed messages

Ignorant people say stupid things about Down syndrome

Mark Leach, Down Syndrome Prenatal Testing, 30th January 2015

From the news page, purportedly independent-thinking people say stupid things about Down syndrome, while a grandmother shares wisdom gained from having a granddaughter with Down syndrome ...

Meanwhile, even if we here in the Southern hemisphere don't get the Superbowl fuss in the US, a great deal of short sharp focus will be on a little girl with Down syndrome featuring in a much-hyped ad, doing something pretty ordinary:

Super Bowl Ad Features Girl With Down Syndrome

Michelle Diament, Disability Scoop, 30th January 2015

... this family was not specifically chosen but we’re thrilled they stopped into their local McDonald’s on that day to take part in this special commercial that is all about lovin’ our customers ...