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
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

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

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 or email

    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:

    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 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

    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?’

    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


    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 

        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.

        Federal Budget 2017: disability sector commentary

        Disabled People’s Organisations Australia (DPO Australia) welcomes some big wins for people with disability in tonight’s Federal Government Budget, but is very concerned by the punitive approach to welfare support that will make life harder for those doing it tough, including people with disability.  “We are extremely pleased to hear that an increase in the Medicare levy will fully fund the National Disability Insurance Scheme and finally guarantee the support needs of people with disability”, said Ms Therese Sands, Director, DPO Australia. “The NDIS is a critical investment in our social infrastructure, an investment for all Australians, now and into the future” ... read the full media release here.
        Every Australian Counts, 9 May 2017
        Treasurer Scott Morrison tonight confirmed the government will fully fund the NDIS beyond 2019. 
        In his Budget speech tonight, Mr Morrison announced the Commonwealth will increase the Medicare Levy from 2% to 2. from 2019 to help fund the NDIS. 
        One fifth of the money raised by the Medicare levy, along with NDIS underspends and other savings will be channeled into the NDIS Savings Fund ... read the full media release here.

        Federal Budget 2017: Down Syndrome Australia commentary

        Budget Night 2017-2018
        9 May 2017

        Down Syndrome Australia's CEO, Dr Ellen Skladzien provides this useful summary of tonight's Federal Budget, on items most relevant to Australians with Down syndrome and their families:

        The most positive news for the disability sector in the budget was the decision to provide full funding to National Disability Insurance Scheme (NDIS) through an increase in the Medicare Levy of 0.5 % from July 2019.  This will provide important funding for the Scheme going forward. It is likely to be controversial as it is basically a tax increase- but provides ongoing funding for NDIS and security for the scheme going forward.

        One area of concern in the budget is a funding cut of $12 million to the Information, Linkages and Capacity building component of NDIS.  This is funding that supports organisations, like Down Syndrome organisations, that deliver information, referrals and peer support to people with disability. It is also the part of the scheme designed to assist people with disability who are not eligible for an individualised NDIS package of support. The Government has rationalised this by indicating it is due to WA not joining the national scheme.  However, given that the current level of ILC funding is extremely low compared to the required level of support required in the sector, it is disappointing to see this cut.

        Other key budget measures for disability include:

        • $33 million dollar package to support aged care and disability workforce growth
        • $209 million to establish the Independent NDIS Quality and Safeguards commission
        • Investment in Disability Employment Services program over the next 4 years including funding to index payments, funding attached to individuals rather than service providers, and a trial to provide DES to children with a disability in their final years of schooling.
        • Changes to the residency requirements for the DSP and age pension.

        There are also a range of health measures which will potentially have a positive impact on people with Down syndrome including:

        • Lifting the freeze on the indexation of the MBS and reversing the removal of bulk-billing for diagnostic imaging and the increase in PBS copayment and related charges
        • $165 million mental health package including $80 million for community psychosocial services
        • Investment in health research
        • Decision not to privatise Australian Hearing

        There was also significant investment in education taking on the Gonski funding model.  This was announced in the lead up to the budget and has been somewhat controversial due to concerns about decreased funding to some private schools.

        Overall there are some really positive outcomes; however, Down Syndrome Australia will continue to monitor the ILC situation- particularly if WA changes their approach to NDIS.

        Tuesday, 9 May 2017

        Latest issue of International Journal for Direct Support Professionals: Understanding Pain

        OUCH! How Understanding Pain can Lead to Gain when it Comes to Supporting Those with Developmental Disabilities
        Lara M. Genik, Tamlyn Freedman-Kalchman, C. Meghan McMurtry, and Yona Lunsky, International Journal for Direct Support Professionals,  Vol 6 #5, May 2017

        ... For many years, people have wondered if individuals with DD experience less pain, more pain, or experience it differently than those without DD. Some people even wondered if those who engage in self-injury didn’t feel pain. Researchers have been trying to find out the answers to these questions, but still aren’t totally sure. We do know that people with DD may respond more slowly to pain and express it differently than those without DD. We also know that even people who self-injure can feel pain. And most importantly, we know that true insensitivity to pain is extremely rare. So, as direct support professionals we should always assume that the people we support can feel pain ...
        • The subscription to this Canadian journal is free. Email the editor, Dave Hingsburger at to subscribe.
        • Back issues are available to download here

        Representation in advertising and media

        How to change the world through advertising
        Geneieve Clay-Smith, Taste Creative, 5 May 2017
        It might sound like a bold and idealistic statement, but when we represent diverse people in advertising campaigns and when we challenge gender roles, we’re having an impact on society ... Apart from being the right thing to do, it makes sense — people with disabilities need the same stuff as everyone else! They have money, they are consumers too, of course it’s a good idea to include people with disabilities in marketing — all brands should do it ...

        Something to watch out for - this comic book launches in July 2017:

        Comedian Rosie Jones wants disabled TV characters who are 'gritty and flawed'
        BBC, 14 April 2017
        Stand-up comic and writer Rosie Jones says we need to see disabled characters on TV "who are gritty, and flawed, and three-dimensional like every other person is". The comedian, who has cerebral palsy, says she's "angry at how disabled people are portrayed by the media" ...
        Oscars diversity debate must include learning disability
        The Guardian (Letters), 24 February 2017
        Diversity has long been an issue at the Oscars, which are due to be awarded on Sunday. Last year’s #OscarsSoWhite campaign highlighted the lack of racial diversity. But disability has been overlooked in this debate, with even less of a voice for people with a learning disability ...

        Hollywood's push for diversity is ignoring the largest minority community
        Gregg Mozgala, America Magazine, 28 February 2017
        At Sunday’s Oscar ceremony, five African Americans received Academy Awards, for acting, producing and screenwriting. This came one year after the Academy of Motion Picture Arts and Sciences was blasted from all sides for not being “diverse” enough. Today, the Academy is being hailed for its immense progress in the area of inclusivity.

        But this is only one thread of progress. Authentic diversity would mean including a group of artists who gain almost no mention in the popular press ...

        Where Were the Actors with Disabilities at the Oscars?
        Easter Seals, 27 February 2017
        The 2017 Academy Awards presentation was all about diversity. So where were the actors with disabilities?

        A Los Angeles Times interview with Academy Award winning actress Marlee Matlin asks the same question. Matlin is deaf, and her Oscar for best actress in Children of a Lesser God marks the last time an actor with a disability won an Academy Award. The only other actor with a disability to ever win an Oscar was Harold Russell, a veteran who lost both hands during World War II. He earned two Oscars in 1947 for his role in 'The Best Years of Our Lives' ...

        A recent study found only 4 per cent of TV show characters in Australia had a disability
        Every Australian Counts, 14 February 2017
        A recent piece of research by Screen Australia benchmarked the current diversity of Australian TV by analysing nearly 2000 main characters from 199 free-to-air Australian TV shows.

        'Seeing Ourselves: Reflections on Diversity in TV Drama' found that only 4 per cent of TV show characters in Australia had an identifiable disability. In reality, just over 18 per cent of Australians have a disability.

        This research also analysed who plays characters with disability, and what this means to stakeholders. It found that actors without disabilities are placed in 91 per cent of roles for characters with disability.

        See the full article summarising the research on the Centre for Applied Disability Research here.

        Monday, 8 May 2017

        A little tidying up

        Our banner has been refreshed, and some links have been updated.

        • Some new blogs to the list of 'blogs we read' in the right hand column:
        In My Own Words - interviews with people with Down syndrome
        IncludEd - inclusion in education, a section of the Starting with Julius initiative
        Look, Cook, Eat - a 'digital how-to cooking magazine designed for people with intellectual disabilities to help promote an independent lifestyle.'
        • A new website link has been added to the list in the right hand column:
        Australasian Society on Intellectual Disability(ASID)
        And some links to inactive blogs and websites have been removed.

        Friday, 5 May 2017

        Weekend reading and viewing: 6 - 7 May 2017

        On the 2nd of May, 2016, my beautiful friend, Annie Love, lost her son, Nicholas. He was just four years old. A mere baby – and the baby of the family. Just a little guy but in his wake, a gaping hole. And all I could think was, how will Annie keep from falling in? ... My limited experience of loss and grief tells me that this space will never be filled. It can’t be. You learn to live around the space ...
        The Little Mumma, 2 May 2017

        A short video about an experimental play written by Kathryn Evans, a woman with mosaic Down syndrome who is recovering from 'frozen syndrome', a result of anxiety.
        Today Tonight, Adelaide, 
        28 April 2017
        Tutti Arts (Adelaide)

        ... My intention ... is to give an account of how standing up for people with intellectual disabilities is possible, even to arguably the scariest individuals you can imagine. Here’s what happened ...
        Jay Mitchell
        Upworthy, 22 July 2016

        In a world where science is getting dangerously close in allowing people to play the role of natural selection, this three-part series will address why Down syndrome is vital in enriching our society… now and in the future.
        In the first episode we go to America to meet Stephanie Thompson, the head of the National Down Syndrome Adoption Network who finds families desperate to give babies with Down syndrome a home. We also look at her personal experience in having a son with Down syndrome, who’s been in care for the last decade ...
        Attitude Live, 30 April 2017
        (video 28m 37s - first video in a series of three)

        I'm tired of influential people using disability slurs as insults. As long as these people continue to use them, the average person in the workplace or schoolyard or street will think it's OK, too ...
        Carly Findlay
        Sydney Morning Herald, 1 May 2017

        Disability sector news

        New facility
        Win News Sunshine Coast, 3 May 2017 (news video)
        An Australian first college for young people with disabilities has opened its doors in Caloundra.

        Dylan Alcott 2017 Patron for International Daw of People with Disability
        Dylan Alcott is one of Australia’s most successful and well recognised Paralympians. Born with a tumour wrapped around his spinal cord, Dylan survived a three year battle to live and has been achieving ever since ...

        NSW CID board member strikes again, this time at the UN
        NSW Council for Intellectual Disability Board Member Robert Strike has been selected to attend high level talks on issues affecting people with disability at the United Nations in New York in June ...

        Funding for community legal centres
        While the NSW Government had already planned to implement a 'rescue package' of funding for community legal centres, such as the Intellectual Disability Rights Service,
        ... the federal government is to reverse its controversial funding cuts to Community Legal Centres (CLCs) in the upcoming budget – a move the community legal sector has described as a “huge relief” ... Government Reversal on Cuts to Community Legal Centres, Pro Bono Australia News, 29 April 2017
        Clickability: new disability serices review site to go nationalSam Carroll, SBS, 9 March 2017
        Two Melbourne-based social workers have developed a 'TripAdvisor-style' website allowing people with disabilities and their carers to rate and review support services on offer ...

        Thursday, 4 May 2017

        News and Commentary on the NDIS (67)

        Dan Conifer, ABC News, 4 May 2017
        Disability service providers are demanding urgent improvements to the National Disability Insurance Scheme (NDIS) as complaints mount about poor-quality plans ...

        Don't play politics with the NDIS
        Rachel Browne, Sydney Morning Herald (Editorial), 3 May 2017
        The NDIS must be adequately - and sustainably - funded ... The overriding fear is that, despite all the good intentions behind the NDIS, problems with its implementation may result in something akin to a zero-sum game for Australia's most vulnerable people ... There is no doubt the NDIS must be adequately – and sustainably – funded. The cost of failure to deliver is far higher.

        First Peoples: Living Our Way - A Conference for Aboriginal People Living with Disability
        Tuesday 23 - Thursday 25 May 2017 - Wagga Wagga NSW
        First Peoples Disability Network
        First Peoples Disability Network is hosting a conference for Aboriginal and Torres Strait Islander people with disability to come and learn how you can engage with the National Disability Insurance Scheme (NDIS) and share your story. 
        We will have a variety of guest speakers for you to hear how Aboriginal people with disability can be best supported in their journey for more choice and control with their service supports and life.
        Registrations close Friday 19th May 2017.
        NDIS reviews practices after lengthy delay in helping critically ill Queensland toddler
        Robert Baird, ABC News, 28 April 2017
        The National Disability Insurance Agency says it is reviewing its practices after a Queensland toddler with a life-threatening condition has waited more than five months for vital treatment ...

        Success with ILC Grant
        Down Syndrome Australia, 26 April 2017
        Down Syndrome Australia is pleased to announce that we were successful in the recent ILC- ACT Jurisdictional grant round on behalf of the Down Syndrome Australia Federation.

        DSA will address the need for ongoing access to resources, peer support and quality information by leading a consortium of State and Territory Down syndrome Organisations to deliver the Information for Life project. This Project will enable us to provide information and linkages to families in the ACT and to develop and deliver national resources. We are very excited about this new opportunity and look forward to working closely with our colleagues in the ACT and across the Down Syndrome federation to deliver this important project and achieve good outcomes for people with Down syndrome and their families.

        Concern over speed of NDIS rollout in Indigenous communities, as NSW launches approach
        Aimee Volkofsky and Declan Gooch, ABC News, 20 April 2017
        A lobby group is calling for a slow down in the launch of the National Disability Insurance Scheme (NDIS) in Aboriginal communities, as its rollout looms in remote parts of NSW.

        The NDIS will launch in many of the state's regional areas from July 1, and will see people with a disability able to receive funds directly to spend on services they choose.

        The First Peoples Disability Network (FPDN) said it believed the National Disability Insurance Agency (NDIA), which is behind the NDIS, has not done enough to ensure there is enough culturally-appropriate support for applicants ...

        NDIA to appeal McGarrigle ruling as test case, 8 April 2017
        The National Disability Insurance Agency (NDIA) has carefully considered the Federal Court decision handed down on 28 March 2017 in relation to the case of Mr Liam McGarrigle.

        Because this is effectively a test case with implications for the long-term financial sustainability of the National Disability Insurance Scheme (NDIS), the NDIA has decided to appeal the Federal Court decision to the Full Court and has lodged an appeal today.

        While the NDIS was set up to be able to contribute to some of a participant’s transport costs, the NDIS Act specifically requires the NDIA to fund reasonable and necessary supports that “take into account what is reasonable to expect families, carers, informal networks and the community to provide” ...

        NDIS hiccups are expected, as with any large-scale social reform
        Helen Dickinson, The Conversation, 18 April 2017
        ... one of the problems with judging success and failure is that they often look the same part way through. We shouldn’t be surprised that such a huge reform process is encountering challenges in the implementation process and these issues don’t mean that the NDIS is failing overall ...

        Down Syndrome Australia supports equal NDIS access for WA
        17 April 2017
        Down Syndrome Australia has written to the WA Minister for Disability Services advocating on behalf of Western Australians with Down syndrome to have equal access to the national disability scheme. Read the full text of DSA's letter here.

        Warning: watch out for dodgy operators in NDIS
        Clare Kermond, Sydney Morning Herald, 16 April 2017
        Disability workers, unions and advocacy groups are raising the alarm over the likelihood that less experienced, less qualified staff, and even dodgy operators could pour into the sector under the National Disability Insurance Scheme ...

        Disability Loop eNews Issue #34, 4 May 2017
        Carers NSW
        Stay up to date with all if the latest NDIS information for carers by subscribing to Carers NSW monthly NDIS update.

        Event for adult brothers and sisters: Sydney

        A gathering of adults who have a sibling with Down syndrome. Enjoy a get together, support each other and make friends:
        Mr Tipply's - The Attic Room 
        347 Kent Street (cnr King St) Sydney 
        5.30 - 10.30 pm Friday 19 May 2017 
        No cost - food and drinks available for purchase 
        To register contact Down Syndrome NSW: