Wednesday, 31 May 2017

People with Down syndrome

Woman with Down syndrome addresses United Nations: ‘I have a right to live’
Nancy Flanders, Live Action News, 27 May 2017
After watching the documentary “A World Without Down Syndrome,” 21-year-old Charlotte Helene Fien, who has Down syndrome and autism, wrote a speech about her right to life that she would later read in front of the United Nations ...
Cindi Rich, Bethesda Magazine, May-June 2017
The Kensington teen is busy with cheerleading, homework and hanging out with friends—things her parents weren't sure she'd ever do ...

Capturing the Moment: Starlings in Rome
David Kenward Photography, 19 May 2017



When I watched the film of the starlings in Rome in Planet Earth II I really wanted to go and see them and see if I could take some photos of them. So I went with my brother Chris, Nathan and best friend Josh. This is the beautiful film my brother Chris made of the weekend. We had great fun, I hope you like it ...
‘Not just a job, he’s got a career!’ says Mum as son with DS lands sought after science careerHR News, 18 May 2017
As talent shortages persist, employers cannot afford to ‘write off’ any group of potential workers, yet it is significantly harder for adults with learning disabilities to obtain work than almost any other client group. Individuals with Down’s syndrome battle misperceptions about their capabilities and often can’t even get an interview ...

Children’s Hospital Employee With Down Syndrome Inspires Doctors, Patients
Paul Burton, Boston CBS Local,16 May 2017
Anyone interested in the secret to success should take a lesson out of Nathan Simons’ playbook. Nathan is the first full time employee with Down syndrome at Boston Children’s Hospital.

“I just love it! I love the people who come here and give good feedback,” Simons said ...

Tuesday, 30 May 2017

Resources

Speak Up and Be Safe from Abuse - Communication toolkit and resources
Scope
Abuse is not ok. Everyone has the right to speak up. Scope was supported by the Victorian Government to produce a communication toolkit and resources for people with communication difficulties, to assist individuals to identify and report abuse ...

Wiki technology helps people with disabilities tell their stories

Durango Herald, 10 December 2016
Twenty-five years ago, if any wiki existed, it was a lyric from a Sheb Wooley song. Today, wiki technology shapes the way many of us access information. In the future, it may be the way people with intellectual disabilities tell their stories and manage their care ...
Endeavour Foundation
Friendship is an important part of life for most people, and brings a sense of shared interests, connectedness and trust. Sadly, there are some people who will use friendship to take advantage of others for their own personal gain.
Mate crime happens when a person is ‘befriended’ by someone who goes on to abuse or exploit that friendship. Most recently the shocking US crime involving a mentally disabled young man who was tied up for five hours and horrifically assaulted by a group led by his school 'friend' while being broadcasted on Facebook Live is an extreme example of such abuse of friendship and trust.

... We have produced an Easy Read Guide for people with an intellectual disability that’s designed to prevent mate crime. Download the guide ... and use it to help you have a conversation with the person you care for about the nature of true friendship and about mate abuse.
Young Carers NSW
Are you 25 years or under? Do you help to care for a family member or friend? If so, you might be a young carer. Young carers are children and young people, 25 years or under, who help to support a family member or friend who has a disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who is frail.

The Who Cares? App is a free narrative based, self-identification tool designed to help young people with caring responsibilities to recognise their role and get the support they need. The App is home to the stories and voices of real young carers from all over NSW. The easy to use sharing function enables users to share these stories outside the App, with the broader community, giving the app an important role in building public awareness about the unique experience of young carers ...

Scrapheap Adventure Ride returns for the eighth year - the biggest and best ride yet!


The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising money for people with Down syndrome.

Last year we had a blast at Four Corners Farm Stay in Nymagee. We had 101 riders and together we raised over $97,000! This year we are aiming to top that and raise a new record of over $100,000 with100 plus riders.

Our destination for 2017 is Green Valley Farm near Tingha, which in turn is near Inverell in Northern NSW. We will be camping and Scrapping on the weekend of September 29 to October 1.

We will have the Adventure Moto Ride departing Wisemans Ferry at 8am on Thursday September 28. Warren Sakey, once again, has a great ride planned and we will be overnighting at Quirindi. More details to follow.

As always, there will be an Adventure ride loop on the Saturday where we are sure there will be thrills and possibly a few spills. On Saturday evening, there will be plenty of fun and entertainment for the whole family, including open mic music during our celebratory dinner auction and awards ceremony.

Of course, the best part of any Scrapheap is catching up with your mates and the friendly competition between teams and raising money for Down Syndrome Australia/NSW. However raising money is not our only objective as I am sure there will be a few drinks raised over the weekend as well.

Remember it is a family weekend and Green Valley farm also offers a wealth of activities for everyone including the kids, so why not bring the whole support crew!

Catering packages and accommodation options info will be provided shortly.

The registration this year is $100 for all bikes (Scrapper or non-scrapper), Please help us make this the most successful and fun year ever.

If you can't join us, we hope you will be able to sponsor one of this year's riders or teams. Make sure you connect with other Scrappers on Facebook by joining the Scrapheap group.


Monday, 29 May 2017

News and commentary from the broader disability community

Disabling Ableism (podcast 19m 04s)
Anne Kavanagh, Pursuit, 15 March 2017
Professor Anne Kavanagh from the Melbourne School of Population and Global Health shares how changes in her own life led her to question our understanding of the health of those living with a disability. A proud activist, Professor Kavanagh says having a disability need not equal poor health ...


The fidget spinning fad and disability discrimination
Ingrid Robeyns, Crooked Timber, 21 May 2017
... So here we see disability discrimination at work. For some neuro-atypical and disabled people, stimming is a way to reduce stress, and indeed also to concentrate better. But often they are told not to do this. The same holds for other forms of behaviour that neurotypicals consider ‘abnormal’. The fidget spinning just shows how much of a social convention, and hence form of domination, those social norms regarding ‘normal behaviour’ are, and that at least some of those conventions are biased against the needs of some groups of disabled people and neuro-atypicals ...

New short documentary shines a light on adults with intellectual disabilities
Social Work News, McMaster University (Canada), 11 May 2017
A new short documentary film – part of a research project led by the McMaster School of Social Work's Ann Fudge Schormans – is providing a unique glimpse into the lives of adults with intellectual disabilities living in Toronto.

What if you didn’t feel welcome in the city you live in? What if you didn’t feel comfortable, or even safe, going into stores or taking transit? What if, wherever you went, you felt like people were staring at you? For many of us, that kind of alienation is hard to imagine, but for many people with intellectual disabilities, it’s a part of everyday life ...

Government response to calls for Royal Commission

"We know best". A Royal Commission into institutional abuse of people with disability has again been rejected by the Australian government
Catia Malaquias, Starting with Julius, 27 May 2017
... the Social Services Minister Christian Porter ... says that “we take the view that engaging in real and immediate and very substantial reform — which is precisely what we’re doing — is a much better response than yet another inquiry.” He was referring to the new NDIS Safety and Quality Commission which won’t apply to people with disability outside the NDIS and will only hear complaints as to the future from when it is established.

But a Royal Commission is not just “another inquiry”. It is a real inquiry with real powers, appropriate protections and greater capacity to be accessible for people with disability, particularly in institutional settings ...

Friday, 26 May 2017

Weekend reading and viewing: 27 - 28 May 2017


Austin Underwood, 39, went to college right out of high school, and studied to be a prep chef. He’s lived on his own ever since graduation, but since jobs in the restaurant business were hard to find, he worked at a local grocery store for 13 years before asking a local restaurateur for a job. And in the last two years, it’s incredibly exciting to hear how his dreams have begun to unfold!
Austin Underwood
In My Own Words, 16 May 2017


Most of us take for granted the ability to have fluid, seamless verbal interactions on a daily basis. This is likely due to the fact that many of us learn the skill of speech with little to no effort. It “miraculously” just occurs. Consider, though, that for your minimally verbal child, these “simple” interactions can be extremely frustrating and require an enormous amount of work ...
Damon Murtha, Friendship Circle
16 May 2017


... Benjamin is my son whom I love with all my heart. Nothing will ever change that, and understanding what is truly going on with him will make it easier to give him the help he needs. So, with a deep breath and a new resolve I told my husband, “I think we should have Benjamin tested for autism” ...
Dana Hemminger, Reflections from Holland
29 April 2017

... But sometimes, when things happen fast, I do notice. I notice not the disability in particular but the life the person with the disability is living. I notice the engagement that people have in their world or with others in their community. I notice that they are caught up in life, in the best way possible. I think this is noticeable to me because I grew up in a world without disabled people in it ...
Dave Hingsburger, Of Battered Aspect
28 April 2017 

Anh Do's guest this week is inspirational five-time Paralympian Kurt Fearnley. Anh tries to capture the charming larrikin's 'never say die' attitude.
Series 2 Ep 7, ABC TV on iView until 14 July 2017

Based on the New York Times bestseller, WONDER tells the inspiring and heartwarming story of August Pullman. Born with facial differences that, up until now, have prevented him from going to a mainstream school, Auggie becomes the most unlikely of heroes when he enters the local fifth grade. As his family, his new classmates, and the larger community all struggle to find their compassion and acceptance, Auggie’s extraordinary journey will unite them all and prove you can’t blend in when you were born to stand out.

Down Syndrome Australia welcomes Labor’s Support for a Royal Commission into institutional abuse of people with a disability

Down Syndrome Australia
26 May 2017
Down Syndrome Australia welcomes the Labor Party’s announcement today that they will support a Royal Commission into institutional abuse of people with a disability. 
Down Syndrome Australia, along with many other organisations in the sector has long supported the establishment of a Royal Commission. A Royal Commission would provide a comprehensive, independent review into long standing issues of abuse and will enable people with a disability to tell their stories and will provide justice for victims. It would also make important recommendations on reform, policy, and practices to address issues of abuse. 
This decision by the Labor Party follows a 2015 Senate Inquiry into Violence, abuse and neglect against people with disability in institutional and residential settings that found that abuse against people with a disability was ‘epidemic’’ and recommended a Royal Commission. Recent media reports have provided further evidence of the problems which are occurring in some residential settings. 
Down Syndrome Australia CEO Dr Ellen Skladzien said, “We are pleased that the Labor party has committed to supporting a Royal Commission. We renew our call for the Government to initiate a Royal Commission into violence against people with a disability. For too long violence and abuse against people with a disability has been overlooked.”

Labor Party statement to advocates for a Royal Commission into violence and abuse against people with disability
Hon Bill Shorten MP, Leader of the Opposition, Senator Carol Brown, Shadow Minister for Disability and Carers, Hon Jenny Macklin MP. Shadow Minister for Families and Social Services, 26 May 2017
Today we announced that a Labor Government will establish a Royal Commission into violence and abuse against people with disability.

We have listened to people with disability and their families who have clearly stated that they want to see a Royal Commission into these reports of abuse.

Opposition response to calls for Royal Commission

In response to continued lobbying from the disability community:

Federal Labor calls for royal commission into institutional abuse of people with a disability

Alexandra Beech, ABC News, 26 May 2017
Federal Labor is calling for a royal commission into the abuse of people with a disability. 
It comes after a Senate inquiry recommended establishing a royal commission into the disability sector in November 2015. 
The co-chief executive of People With Disability Australia, Matthew Bowden, has welcomed Labor's announcement, saying violence against people with a disability was at "epidemic levels" ...

Labor pledges royal commission on abuse of people with disabilities
Amy Remeikis, Sydney Morning Herald, 26 May 2017
... Opposition Leader Bill Shorten said Labor would lobby the Turnbull government to establish a commission on violence and neglect in the disability services sector, and make it a priority if elected.
A joint Senate committee, set up in 2015 in response to growing concerns and media coverage of failures and abuse within the system, recommended a royal commission be established to help bring about change ...
Call for Royal Commission into abuse of people with disability
Inclusion Australia, 26 May 2017 (Endorsed by NSW Council for Intellectual Disability)
“As a woman with an intellectual disability, I can say that abuse from people who were supposed to be caring for me has had a very bad long term impact on my life”, says Heather Forsyth.

Ms Forsyth is Inclusion Australia’s Our Voice Chairperson and knows first-hand the devastating impact abuse and violence against people with disability has on lives.

Inclusion Australia and its member organisations are supporting the call for a Royal Commission into the abuse of people with disability. And pressure is mounting for the Government to step up and do the same, with Opposition Leader Bill Shorten and Shadow Minister for Families and Social Services Jenny Macklin, today also calling for a Royal Commission into the abuse of people with disability.

Thursday, 25 May 2017

All-abilities netball: Gladesville (Sydney)

gladesvilleravensnetball@gmail.com

News and commentary on the NDIS (68)

NSW NDIS information events
  • Links to events for all states are listed in the left side-bar on this page

NDIS Guides for Physicians and Paediatricians
Royal Australian College of Physicians
The rollout of the National Disability Insurance Scheme (NDIS) across Australia will change the disability interface with existing sectors, including health. The RACP's NDIS Guides are a resource for physicians, paediatricians and other health professionals to access practical information that can help them navigate the scheme, and support their patients ...
Can the NDIS deliver?
Helen Dickinson, Pursuit, University of Melbourne, 23 May 2017
... Recently, Australia was ranked last in an Organisation for Economic Co-operation and Development (OECD) study of quality of life of people with disabilities, and with the significantly worse outcomes experienced by people with disabilities, the NDIS is a welcome reform. 
We recently embarked on a research project, funded by the University of Melbourne’s Social Equity Institute, to explore the degree to which the NDIS is achieving its aims and objectives from the perspective of people with disability using these services ...

National ILC Grant Success
Down Syndrome Australia, 23 May 2017
Down Syndrome Australia is pleased to announce that we were successful in the recent ILC National Grant round on behalf of the Down Syndrome Australia Federation. 
This grant will allow DSA to develop a national Toolkit to provide information to schools, employers, community organisations and others to build capacity in mainstream organisations. It will further compliment the Jurisdictional ILC Grant won previously, which included funding for resources that will be targeted more for people with Down syndrome and their families. 
We are thrilled for this new opportunity and look forward to working across the Down Syndrome Australia Federation to deliver these important projects over the next 12 months.

In addition, some of the national ILC grants awarded to other organisations, will also benefit people with intellectual disability quite broadly by helping to make mainstream services and communities generally more inclusive.

Federal budget 2017: The people (mostly women) the NDIS forgot
Jenna Price, Sydney Morning Herald, 23 May 2017
... "The focus on the national disability insurance scheme is clearly important for those who receive funding through the scheme – but that's not everyone. And the mere mention of the NDIS makes everyone think that all issues around disability are sorted" ...
Gabrielle Chan, The Guardian, 15 May 2017
Disability groups have warned Labor it would be a shame to create a political fight over the Turnbull government’s plan to increase the Medicare levy to fully fund the National Disability Insurance Scheme ...

Is NDIS really as scary as people say it is?
Lochlan and Tanya Rogers, Every Australian Counts, 9 May 2017
... Why are people fighting the NDIS? It’s time to embrace the NDIS. 
Yes the process was always going to be hard, yes you still have to fight for what your child might need, but let’s keep it real. The process is challenging, it needs to be to enable the correct people to access the support. We need to make sure we are getting value for the money we receive. 
But most importantly we need to stop fighting the NDIS and stop scaring people away from the NDIS ...

Cheryl McDonnell, InCharge, 3 January 2017
... The NDIS won’t pay for your groceries, but they will pay for a support person to take you shopping if that is a support that you need. 
Think of the things that any non-disabled person pays for themselves, these are the things that NDIS does not pay. Belonging to a club or sport, registration for these or uniform and basic equipment are all costs a non-disabled person pays for themselves ...

How will the NDIS change Australian cities?
Ilan Wiesel, Carolyn Whitzman, Christine Bigby and Brendan Gleeson, Melbourne Sustainable Society Institute, March 2017
People with disability represent a fifth of the Australian population (AIHW 2015), and this proportion is expected to increase with population ageing. With the National Disability Insurance Scheme (NDIS) being progressively rolled out across Australia, this is a particularly appropriate time for the Australian urban research agenda to engage with disability in more meaningful ways ...

____________________________________________

Wednesday, 24 May 2017

Support for the call for a Royal Commission into violence and abuse against people with disabilities

Down Syndrome Australia
22 May 2017
The call for a Royal Commission into violence and abuse against people with disabilities is growing. 
Down Syndrome Australia, along with many other organisations has long supported the establishment of a Royal Commission. 
The Federal Government says NDIS Safeguards will prevent violence and abuse. The safeguards are crucial but they will not safeguard all people in all situations. 
We welcome the latest actions including last week's open letter to the government by over 100 prominent Australian academics, and this statement by Disabled Peoples Organisations Australia.

You may have already signed the petition following the Four Corners program back in March, but please also give your support by adding your name to the DPOA statement.

Blind academic calls for Royal Commission into abuse of people with disabilities UQ News, 23 May 2017
A legally blind academic from The University of Queensland has thrown his full support behind a petition demanding Prime Minister Malcolm Turnbull launch an immediate Royal Commission into the abuse of disabled people ...

Research news and commentary #4 for 2017

Down Syndrome Research Forum 2017, UK (posted yesterday)

For people with Down syndrome, varying test results can make it harder to get the right vision prescription
Eureka Alert, 4 May 2017 -
Even objective, automated vision testing--using a device called an autorefractor--gives variable results in patients with Down syndrome, reports a study in the May issue of Optometry and Vision Science, the official journal of the American Academy of Optometry ...

The Arizona Cognitive Test Battery for Down Syndrome: Test-Retest Reliability and Practice Effects
Jamie O. Edgin, American Journal on Intellectual and Developmental Disabilities, May 2017
Abstract
A multisite study investigated the test-retest reliability and practice effects of a battery of assessments to measure neurocognitive function in individuals with Down syndrome (DS). The study aimed to establish the appropriateness of these measures as potential endpoints for clinical trials. Neurocognitive tasks and parent report measures comprising the Arizona Cognitive Test Battery (ACTB) were administered to 54 young participants with DS (7–20 years of age) with mild to moderate levels of intellectual disability in an initial baseline evaluation and a follow-up assessment 3 months later. Although revisions to ACTB measures are indicated, results demonstrate adequate levels of reliability and resistance to practice effects for some measures. The ACTB offers viable options for repeated testing of memory, motor planning, behavioral regulation, and attention. Alternative measures of executive functioning are required.
Article Citation:
Jamie O. Edgin, Payal Anand, Tracie Rosser, Elizabeth I. Pierpont, Carlos Figueroa, Debra Hamilton, Lillie Huddleston, Gina Mason, Goffredina Spanò, Lisa Toole, Mina Nguyen-Driver, George Capone, Leonard Abbeduto, Cheryl Maslen, Roger H. Reeves, and Stephanie Sherman (2017) The Arizona Cognitive Test Battery for Down Syndrome: Test-Retest Reliability and Practice Effects. American Journal on Intellectual and Developmental Disabilities: May 2017, Vol. 122, No. 3, pp. 215-234.
  • Abstract online, full text available for purchase 

Outcome Measures for Clinical Trials in Down Syndrome
Anna J. Esbensen et al, American Journal on Intellectual and Developmental Disabilities, May 2017

Abstract
Increasingly individuals with intellectual and developmental disabilities, including Down syndrome, are being targeted for clinical trials. However, a challenge exists in effectively evaluating the outcomes of these new pharmacological interventions. Few empirically evaluated, psychometrically sound outcome measures appropriate for use in clinical trials with individuals with Down syndrome have been identified. To address this challenge, the National Institutes of Health (NIH) assembled leading clinicians and scientists to review existing measures and identify those that currently are appropriate for trials; those that may be appropriate after expansion of age range addition of easier items, and/or downward extension of psychometric norms; and areas where new measures need to be developed. This article focuses on measures in the areas of cognition and behavior.
Article Citation:
Anna J. Esbensen, Stephen R. Hooper, Deborah Fidler, Sigan L. Hartley, Jamie Edgin, Xavier Liogier d'Ardhuy, George Capone, Frances A. Conners, Carolyn B. Mervis, Leonard Abbeduto, Michael Rafii, Sharon J. Krinsky-McHale, Tiina Urv, and Outcome Measures Working Group (2017) Outcome Measures for Clinical Trials in Down Syndrome. American Journal on Intellectual and Developmental Disabilities: May 2017, Vol. 122, No. 3, pp. 247-281.
  • Abstract online, full text available for purchase

New research shows role-playing disability promotes distress, discomfort and disinterest
Science Daily, 11 April 2017
... a recent study published by Michelle Nario-Redmond, Ph.D., professor of psychology, reveals that disability simulations often result in feelings of fear, apprehension and pity toward those with disabilities, proving Nario-Redmond's thesis that disability simulations do more harm than good ...
  • Abstract online: Michelle R. Nario-Redmond, Dobromir Gospodinov, Angela Cobb. Crip for a Day: The Unintended Negative Consequences of Disability Simulations, Rehabilitation Psychology, 2017

Most of our readers will not qualify to participate in this study, but will be interested that it is being done:
We are launching a new clinical study for people with Down syndrome that will test the safety and tolerability of an investigational vaccine which might delay the onset of Alzheimer’s disease-related cognitive decline.

Since individuals with Down syndrome develop Alzheimer’s at a much higher rate than the general population, this study will test whether an investigational vaccine can affect Alzheimer’s-related brain changes in people with Down syndrome. This is the world’s first clinical trial to test an anti-amyloid vaccine for possible treatment of Alzheimer’s disease in people with Down syndrome  25 to 45 years of age. 
The study is a randomized, placebo-controlled, double-blinded Phase I study. Study participants will be randomly given either the active investigational vaccine or a non-active placebo. The study will last 24 months. 
For more information please visit www.massgeneral.org/downsyndromeresearch.

Tuesday, 23 May 2017

Latest additions to 'events' pages

    These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them 


    "Kill Off" - exclusive screening
    6.30 pm Friday 2 June 2017 - Illawarra Performing Arts Centre (IPAC), Wollongong
    Flagstaff Group
    Produced by Bus Stop Films in collaboration with The Flagstaff Group, Kill Off promotes inclusion in the film industry for people with disabilities. 
    Check out the event page to keep up to date with all the information and updates.

    Adult Siblings Catch-Up Sydney
    10am -12 noon Saturday 3 June 2017  -  Marrickville
    Siblings Australia
    Do you have a brother or sister with disability?  
    All sibling relationships can be complex and ever-changing, but when a brother or sister has a disability it can be even more complicated.  
    Siblings Australia is establishing local peer support networks to share support and information, and we welcome all adult siblings no matter what role you play in your brother/sister’s life. As one sib said at the first group, ’I don’t feel so alone anymore’. 
    Register via http://siblingsaustralia.org.au/events.php or email kate@siblingsaustralia.org.au

    Down Syndrome Research Forum 2017, UK
    19 and 20 September 2017 - University of Hertfordshire, UK
    Down Syndrome Education International
    The Down Syndrome Research Forum is a regular international event where researchers and practitioners meet to discuss current research, recent findings and implications for practice. 
    Researchers and postgraduate students from throughout the UK, Europe, and elsewhere are invited to attend. We also encourage contributions from education and healthcare professionals working with people with Down Syndrome. We also welcome parents of children with Down syndrome and others with an interest in the detail of current research.

    Monday, 22 May 2017

    Call for volunteer film students: Bus Stop Films

    Call for volunteer film students, posted by Bus Stop Films recently:
    Bus Stop Films is looking for film students to help support our inclusive film studies workshops. 
    We need people who are passionate about film, seeking to make a difference in the industry and who are willing to impart their knowledge to others 
    If this sounds like you, then get in touch with us at: hello@busstopfilms.com.au

    Adult siblings: SBS 'Insight'

    Siblings Australia posted on Facebook on 19 May about an opportunity for siblings to contribute to an episode of Insight on SBS TV:
    SBS TV’s Insight program wants to know what’s it like growing up with a brother/sister with a disability and would love to hear from siblings. 
    Please contact rose.hesp@sbs.com.au All conversations confidential. If you talk to Rose it doesn't mean you will be invited to be in the audience and you can also say you are willing to talk with her but NOT go on the show if you prefer. 
    The program is currently scheduled to be pre-recorded on Tuesday, 20 June, 7pm – 9pm at the SBS TV studios in Artarmon, Sydney. It will be broadcast soon after on a date to be announced. 
    For more background information, visit the Facebook post, or email Kate Strohm at Siblings Australia kate@siblingsaustralia.org.au

    Friday, 19 May 2017

    Weekend reading, listening and viewing: 20 - 21 May 2017


    ... Gretel and Vanessa and the whole Cranfield family would teach me a lot over the next 15 years. A few years after that day in the park, another friend of mine had a baby who was diagnosed with Down Syndrome on the day he was born. 
    Like Vanessa, this friend had no idea that the baby she’d been carrying had a disability. And as she struggled in those early days and weeks and months to process the radical, unexpected change in her life and the life of her husband and other children, I remember her saying “I can cope with the idea of a Down Syndrome child but what about when he becomes a man? I just can’t get my head around that.”
    Well, Vanessa’s daughter Gretel is very much a woman now. She’s in her early twenties and her disability and the way she interacts in the world and what she needs from her parents continues to change ...
    Mia Freedman and Vanessa Cranfield, Mammamia
    17 May 2017
    • The article is a transcript of the first part of the main podcast. There is a short extract of the podcast linked in the middle of the article, and the main, longer interview is at the bottom of the article.
    ... Since he is an authority on the leading edge in Down syndrome research, I quizzed him during our appointment on a lot of topics that keep coming up in the DS parent community. I have been using that information in private conversations and forums to help other parents make scientifically informed decisions for their children with Down syndrome. When we started this blog, I reached out to Dr. Skotko for an email interview, and he agreed enthusiastically ...
    No BS About DS, 17 May 2017

    With over 260 college options, the future is looking bright for students with intellectual disabilities. I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College”. 
    I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diploma’s together ...
    Inclusion Revolution, 7 May 2017 
    This photographic portrait project's aim, is to challenge any preconceptions people have about individuals who have a learning disability. The photographers brief was to look past the disability and focus on ability, personality and uniqueness. This film captures the journey we went on and the empowerment everyone who was involved felt. The images are honest and beautiful.

    ... But on the subject of disability, I found a Jesus that is, frankly, disappointing. He usually does precisely what disability advocates rail against. He reinforces the idea that the disabled body is broken, damaged. He treats the disabled body as something to fix ... My daughter attends church every Sunday, and, thankfully, no one tries to heal her. But I still seek a more promising disability theology ...
    Heather Kirn Lanier, America Magazine
    7 March 2017

    Movies can have big impacts on people's lives, but not many films can say they've actually changed the law. Enter Irish film 'Sanctuary' about a couple who want to be together but face huge obstacles ...
    Tom Power, Q, CBC Radio (Canada)
    10 March 2017
    • Includes a link to the film trailer and to a 16m interview with the film maker

    Scrapheap Adventure Ride 2017: Team Inverell in the news

    Much appreciated continuing support for Scrapheap Adventure Ride from Inverell, in northern NSW:

    Inverell's Scrapheap Adventure Riders prepare for first Down Syndrome NSW fundraiser
    Naomi Shumak, The Inverell Times, 17 May 2017
    Brendon, Emi and Ashleigh Campbell

    ... Each year, the Scrapheap Adventure Riders take up the challenge of buying a bike for less than $1000, doing whatever is needed to make it roadworthy and taking it through the outback; all while raising funds for Down Syndrome NSW.

    “I’ve blown a few bikes up, but it’s all the enjoyment and fun of it,” rider Joe Bliss said.

    Local Brendon Campbell said the ride meant a lot to his family, especially daughter Emi, who has down syndrome.

    “Our family has benefitted from NSW Down Syndrome Association with support and events since Emi was born. Joining this is part of our way of helping to give back,” he said ...



    Thursday, 18 May 2017

    News and commentary from and about the broader disability community

    Group homes for people with a disability must be phased out to prevent abuse, academics say
    Alison Branley, ABC News, 17 May 2017
    There are growing calls to phase out the practice of placing people with a disability together in group homes amid growing reports of neglect and abuse.

    More than 100 academics have published an open letter calling on Prime Minister Malcolm Turnbull to hold a royal commission into abuses and neglect in the homes ...


    ... the disability community is one of the most diverse marginalized groups out there. There are thousands of different types of disabilities — physical and mental, visible and invisible. Even as different disabled people, we have the privilege of not knowing what it's like to have disabilities other than our own ...

    Raising a cup to Sutherland Court volunteerThe Leader, 7 May 2017
    Catherine Lukic said she has gained immense confidence through her role at Sutherland Court. She is one of three people who spend their days in court volunteering to help people with intellectual disability navigate the legal and criminal justice system ...

    Do you live here?
    Sam Connor, Clickablog, 2 May 207
    ‘Do you live here?’

    I was amused. The little boy asking the question was maybe five years old and he was looking at me seriously. We were in one of Perth’s major shopping centres and I’d stopped my wheelchair to retrieve my mobile from my bag.

    ‘No, I don’t,’ I said, grinning. ‘Why did you ask me that, kid?’


    Unalone
    Dave Hingsburger, Of Battered Aspect, 9 April 2017
    ...The natural state for people with disabilities, or at least people with disabilities that look like me, is alone. People have trouble thinking of us as being part of a loving social group. People seem to actively want to think of us as sad, isolated, people, loved by none, included by no one ...

    Oakden - segragation of vulnerable people and translating learnings into culture
    Catia Malaquias, SWJ- IncludEd, 29 April 2017
    ... the Report found a dominant culture at Oakden that devalued vulnerable people with significant intellectual and cognitive disabilities entrusted to their care. A finding that resonates with the findings in November 2015 of the Community Affairs Reference Committee of the federal Senate in its report on “Violence, Abuse and Neglect against People with Disability in Institutional and Residential Settings” ...

    Quarter of kids in parts of Cape York are intellectually disabled and not getting help, report finds
    Kristy Sexton-McGrath, ABC News, 27 April 2017
    Indigenous leader Noel Pearson wants an inquiry into Queensland's Education Department after a report found a quarter of students in some Cape York communities have an intellectual disability but not getting the support they need ...

    Wednesday, 17 May 2017

    People with Down syndrome


    Anna and Emily a hit among volunteers
    Elouise Hawkey, The Daily Liberal, 11 May 2017
    Anna Gibson and Emily Gardner have quickly become known for their infectious personalities and warm smiles within the Meals on Wheels community.

    The 23-year-old Dubbo residents have each volunteered with the community service organisation for several years, delivering meals to people unable to cater for themselves. Each Thursday the duo designates time out of their day to deliver the ready-made meals and have a chat with the recipients ...


    A young Charleston potter with Down syndrome is ready for his close-up
    Deanna Pan, Post and Courier, 13 May 2017
    Christian Royal stands in the corner of his studio, his hands buried in the pockets of his jeans, while a makeup artist smooths his hair with her fingers and his brother secures a lavalier microphone under his shirt ... Christian is a potter ... They're about to film a scene for a new episode of "Handcrafted America," a cable series on the family-friendly INSP network, where the host, television actress Jill Wagner, travels the country, introducing viewers to American artisans and their craft ...

    Brisbane teenager’s unique talent has seen him become Australia’s first Elephant Whisperer
    Leanne Edmistone, The Courier-Mail, 11 May 2017
    His voice is part Leonard Cohen, part Tom Waits and uniquely Alexander Procopis. The velvety rumble of his deep, distinctive throaty baritone reverberates through the ­suburban church hall at Ashgrove, in Brisbane’s inner northwest, as dust dances in the beams of sunlight ...

    Everyone Needs Help - A Gift From the Universe to Change the World
    Mardra Sikora, Grown Ups and Downs, May 2017
    ... “Don’t Panic” has served him well as his experiences keep taking him further and further, all the way to the United Nations building in March of 2017 for World Down Syndrome Day. Here, upon taking the platform and seeing his name lit up and the audience preparing to hear him, he said, “I like it here.” ...

    McDonald's 'lobby manager' with Down Syndrome retires after 33 years
    Laura Colvin, Livingston Daily, 8 May 2017
    Daniel Lybrink pumped his arms and hammed it up for an adoring crowd Monday as family, friends, co-workers and others crammed into the Brighton McDonald’s to wish him well. After 33 years, the 62-year-old Howell resident is retiring from the restaurant ...

    MacNeil named Citizen of the Year
    Chris Abbott, Tillsonburg News, 9 May 2017
    Tillsonburg District Chamber of Commerce announced Tillsonburg's 2017 Citizen of the Year is Matthew MacNeil.

    ... "I was so, so suprised," said MacNeil, who didn't know he had been nominated. "I didn't know about it yet, but when I did, I was so thankful that they chose for me for that award."

    MacNeil, 27, made headlines when he travelled to New York City to speak at the United Nations on World Down Syndrome Day, March 21. His message was that everyone should be proud of who they are and they should all be treated the same as everyone else ...

    Tuesday, 16 May 2017

    TOUCHDOWN 21


    TOUCHDOWN21 is a research project.
    A research project made by people with Down syndrome, about people with Down Syndrome. 
    We collect information. 
    We want to look at this topic from many different angles. 
    And we want to bring together people who are thinking about this topic.
    It started in Germany as a World Down Syndrome Day project, and is based there, but all the website pages are now available in English.

    There are stories about people with Down syndrome from around the world, art projects, film, history, information and questions.

    The idea of people with Down syndrome researching Down syndrome would have been revolutionary until very recently - TOUCHDOWN21 is worth watching to see where it takes us.

    New See and Learn app: First Phrases 2

    From Down Syndrome Education International:
    Our new See and Learn First Phrases 2 app for iPads is now available from the Apple App Store. 
    See and Learn First Phrases 2 teaches two-keyword phrases illustrated in themed books using early vocabulary that is taught in See and Learn First Vocabulary 1 and See and Learn First Vocabulary 2.  
    Building on the sight words learned in See and Learn First Phrases 1, See and Learn First Phrases 2 also teaches sight word reading using simple matching, selecting and naming activities. 
    See and Learn First Phrases 2 is part of See and Learn Language and Reading – a structured teaching programme designed to teach children with Down syndrome to talk and to read.
    All the details of activities, content, features, advice on use, links to ordering and other See and Learn apps are on the See and Learn website, here.

    Monday, 15 May 2017

    Latest additions to 'events' pages

      These links provide information about events run by other organisations that might be of interest to people with Down syndrome, their families, carers and professionals who support them 


        DISCOVER
        6 June - 15 August 2017 - Art Gallery of NSW and Seven Hills
        Front Up
        Discover is a FREE, 12 week arts and cultural program led by Western Sydney artists Daniel Kojta and George Tillianakis. You will have the opportunity to explore various art practices, work on your skill set within a professional arts environment, whilst focusing on building self-confidence as an artist.
        Creative people aged 17-35, with disability or the experience of mental health concerns who are interested in developing their current skills sets and engaging with professional artists and educators to work towards furthering their education and employment opportunities...



        How to Build a Home
        Thursday 1  -  Saturday 3 June 2017 - Balmain

        Ever After Theatre
        'How to Build a Home' takes you on an immersive adventure into the experiences of 'home' for people with disabilities. This unique and intimately personal performance will shift your preconceptions and open your mind to what is possible.

        We're Very Serious- taking artists with disability seriously
        6 June 2017 - Museum of Contemporary Art, Sydney
        Vivid Sydney
        How do theatre makers, performers, visual artists and dancers with disability get taken seriously as artists? Why is inclusion better? 
        Join three recent Winston Churchill Fellows Sarah-Vyne Vassallo (Murmuration), Gabrielle Mordy (studio A) and Alison Richardson (RUCKUS) as they speak about their important findings across Europe, the United States and United Kingdom where they each explored professional inclusive arts practice ... The event will be MC’d by RUCKUS ensemble member, Tropfest Award winning actor and advocate for people with intellectual disabilities Gerard O’Dwyer.

        Right Relationships
        Wednesday 21 June 2017 - Bomaderry
        Thursday 22 June 2017 - Lidcombe
        Friday 23 June 2017 - Newcastle

        Resourcing Families
        • A free workshop for people with disability, family members and their friends 
        • How to create a partnership between families and services that really works
        • Presented by Margaret and Jeremy Ward

        Relationships and Sexuality Workshop

        21 June 2017 - Camperdown
        Centre for Disability Studies
        An information session facilitated by Jemima MacDonald and Laura Hogan that will provide a brief introduction and opportunity to explore relationships and sexuality for people with disabilities.
        The course is targeted towards service providers, clinicians, case coordinators and educators, however anyone with an interest in the area is welcome to attend.

        Friday, 12 May 2017

        Weekend reading and viewing: 13 - 14 May 2017


        2017 - 2018 Federal Budget: information and opinionIt has been Federal Budget week in Australia - information and commentary relevant to people with Down syndrome and other disabilities and their carers has been compiled into a single page here.
        It's been a big week of serious matters, with the Federal Budget and the subsequent analysis, and the tabling of the report into Qualifying for the Disability Support Pension in the House of Representatives, so take just 30 seconds to enjoy this very sweet ad by Johnson's Baby from Brazil.

        I met you for the first time 5 years ago. I hated you the moment they introduced us. I was angry at your intrusion into my family. I didn’t want you to have any part in it. You weren’t expected and you certainly weren’t welcome ... I wanted to like you. To be like those that had known you much longer; so accepting and understanding ... You and I still have our moments ... For these things and more I do love you, Down syndrome ...
        Sherry Clair, Frolic
        21 March 2017

        Madeline has Down syndrome and lives with her family in Wollongong, NSW, Australia. Here is a letter that she wrote to her birth mother for Mother’s Day.
        The She Is Project, 15 May 2017

        I’m one of those people who finds their life experience so interesting I wrote a book about it. But first I wrote for several years on my blog about my husband, about me and mostly about our son Thorin who lives with Down syndrome ... My most consistent dilemma is—is it really okay to write about Thorin? You can Google Thorin and find countless links to on-line content including photos. That thought fills me with concern and sometimes outright fear. So what over-rode my concerns to write about my son? And what restrictions do I impose? I have some thoughts ...
        Kari Wagner-Peck,  Bloom, 11 May 2017

        I made a decision this week that I thought was surprisingly easy. I enrolled my just-turned-two-year-old son with Down syndrome in preschool. After having a developmental surge in October, Anderson has recently hit a plateau. He is able to walk, but is a little timid and a lot stubborn about it. We’ve been onboard the surge-plateau rollercoaster since his arrival, it’s normal. But now that he has less than one year before starting public school, everything seems more urgent ...
        From News Anchor to Homemaker
        31 January 2017

        Project explores relationships between client and support worker
        Community Care Review, 9 March 2017
        The dynamics of the relationship between young people with disability and their support worker have been captured in a new book produced as part of a national research project.

        The book forms one part of a research project exploring what helps young people with cognitive disability and their paid support workers in their work together. The book, Relationships and Recognition: Photos about Working Together, is a collection of photos taken by 40 pairs of young people and support workers from six different parts of Australia who have shared their stories of their support relationship.

        Lead investigator Dr Sally Robinson from the Centre for Children and Young People at Southern Cross University said the pairs took photos over several weeks of how they spend their time together and the activities they like to participate in ...

        Down Syndrome Australia welcomes the Disability Support Pension Review Recommendations

        Down Syndrome Australia
        11 May 2017

        Down Syndrome Australia welcomes the final report of the Joint Committee of Public Accounts and Audit Inquiry into Qualifying for the Disability Support Pension which has been tabled today in the House of Representatives.

        In recent years, people with Down syndrome have been subjected to unnecessary, time consuming and stressful medical reviews to prove that they continue to be eligible for the DSP. Down Syndrome Australia has been strongly advocating for a change to the review process for the Disability Support Pension.

        In the report tabled today, the Joint Committee of Public Accounts and Audit has recommended 
        “the Department of Social Services review the List 1 of conditions that provide eligibility for manifest grants of the Disability Support Pension. The Committee recommends particular attention is given to the merits of including chromosomal disorders, such as Down syndrome, on List 1.”
        Down Syndrome Australia CEO, Ellen Skladzien said “We are very pleased that the Committee has listened and responded to the concerns we raised in our submission. These unnecessary reviews not only put needless burden on families but also are an inefficient approach and a waste of limited resources. The inquiry has clearly revealed the need for a more targeted approach to reviews and ensuring that appropriate safeguards are put in place to avoid unnecessary burdens on people with a disability and their families.”

        Down Syndrome Australia also welcomes the recommendation for the Department of Human Services and the Department of Social Services to conduct an end-to-end review of the administration of the Disability Support Program, including consultation with stakeholders as well as a recommendation to provide people with more time to provide medical evidence to the Department.

        Thursday, 11 May 2017

        Budget 2017: What it means for carers

        Carers Australia
        11 May 2017
        Carers Australia has produced a document outlining a number of the key measures in the recent Federal Budget which may affect unpaid carers. 
        Please note that Budget measures must be passed by Parliament before they can come into effect.
        Summary The Budget did not include any new measures that will directly affect carer support services or social welfare payments devoted to carers. 
        Several measures were announced that relate to the interests of carers, including additional supports for the people to whom they provide care.

        Feedback invited on NDIS Code of Conduct

        From the Department of Social Services:

        A new National Disability Insurance Scheme (NDIS) Quality and Safeguarding Framework (the Framework) has been developed to ensure that all NDIS participants can access high quality and safe supports. The Framework was developed in consultation across governments and with people with disability, carers and providers and is available on the Department of Social Services website.

        One aspect of the new NDIS Quality and Safeguarding Framework is a new NDIS Code of Conduct.

        A code of conduct is important to:
        • empower people with disability in relation to their rights;
        • outline expectations for providers and individual workers,
        • shape the behaviour and culture of organisations; and
        • provide a mechanism to enforce consequences if workers and providers do not meet expectations.
        The final Code of Conduct will be enforceable by law and will include sanctions for breaches of the Code. The Code will come into effect once the NDIS is at full-scheme.

        We welcome your ideas and feedback on the content of the Code of Conduct. We invite you to read the Discussion Paper, which is also available in an Easy English version. You are encouraged to complete the quick survey on this website, or upload a submission if you have more detailed feedback to contribute to the discussion. Your input, along with others who contribute to the consultation, will be considered as we finalise the Code of Conduct.

        The closing date for completing surveys and uploading submissions is 5pm (AEST), 21 June 2017.

        Wednesday, 10 May 2017

        Federal Budget 2017: media commentary

        Today's media is, of course, full of news and opinion on the Federal Budget delivered last night. These links, compiled by People with Disability Australia, include mainstream media comment on budget measures likely to directly impact people with disabilities:

        Budget 2017 sees Medicare rebate freeze slowly lifted and more funding for the NDIS: experts respond, The Conversation, 9 May 2017



        ________________________________

        The Australian Government provides information on budget measures by each portfolio - this page gives links to those relevant to the Department of Social Services, likely to be relevant to many people with disabilities and their carers:

        Budget 2017-18
        Australian Department of Social Services, 10 May 2017
        • Portfolio Budget Contents
        • Media releases
        • Fact sheets
        The Australian Government Budget website also has more information about the Budget 2017-18.