Thursday, 8 December 2016

Down Syndrome NSW 2017 education conference: bookings open



SMC Conference and Function Centre, Goulburn Street, Sydney 
Featuring Dr Rhonda Faragher, Dr Kelly Burgoyne (formerly of Down Syndrome Education International) and leading professionals from within the Department of Education and Training and the Catholic Education Office.
This is an essential two day conference for anyone working with a student with Down syndrome and suitable for educators working in all education sectors. Parents and carers are also welcome.

Will you speak up on mental health?

People with intellectual disability have been left out of the draft National Mental Health Plan
NSW Council for Intellectual Disability (blog), 30 November 2016
With more than 150,000 Australians with intellectual disability experiencing mental health disorders yet having poor access to health care, it is not good enough!

Right now you can have your say about this. Will you help make sure people with intellectual disability can get the mental health care they need?

Send an email to health Minister Sussan Ley today and let her know that mental health matters to people with intellectual disability ...
read more here for a sample letter, and further information from NSW CID on how you can promote this effort.

Speak up series: Michael Sullivan tackles abuse and neglect
NSW Council for Intellectual Disability (blog), 29 November 2016
"I know saying good and ordinary sounds like they don’t go together, but they do. People with intellectual disability just want a good ordinary life, like anybody else."Last week our Chairperson, Michael Sullivan, was the key note speaker at the Ombudsman Forum - Addressing the abuse, neglect and exploitation of people with disability. Michael delivered an important and powerful speech and raised his voice to speak up on behalf of so many who haven’t been able to. As part of our Speak Up series we are featuring Michael's speech.


Wednesday, 7 December 2016

People with Down syndrome


ScreenAbility internships 2017 awarded
Congratulations to Audrey O'Connor on gaining one of eight paid internships in the first round of the ScreenAbility initiative launched by Screen NSW earlier this year, with recipients announced this week.

Audrey will be working with Giant Dwarf Theatre in Redfern, as a camera assistant. She is an experienced actor, writer and film-maker, having worked on Don't DIS my ABILITY campaigns, with Ruckus Ensemble, Sydney Theatre CompanyBeyond the Square and with Bus Stop Films as an actor and cinematographer.

Emma Gordon-Smith Loves Blue Roo Theatre Company
Scenestr, 21 November 2016
Blue Roo is a Brisbane theatre company that focuses on and celebrates talented performers who are living with varying disabilities that by no means ever hinder their performance abilities ...

Tracksuit: The WA dance troupe putting performers with disabilities centrestage
Eliza Laschon, ABC News, 20 November 2016
A dance program in Perth is helping people with disabilities to build physical and cognitive strength through movement, but for Lauren Marchbank it is simply about doing what she loves.

This 25-Year-Old Aussie Lives And Works With Disability
Emma Brancatisano, Huffington Post, 22 November 2016

Nathan Basha is an office assistant at Sydney radio station, Nova 96.9, working alongside hit duo Fitzy and Wippa. He is 25-years-old, lives out of home and has an impressive infatuation with movies.

CBS News (Boston), 2 December 2016
Collette Divitto is now running her cookie business around the clock, CBS Boston reports. Since the station profiled the 26-year-old late last month who was born with Down syndrome, she has received orders for more than 25,000 cookies around the country ...

Best mates are now TV stars
Michelle Smith, Bayside Star News (Qld), 22 November 2016
Joe Surawski and Alex Procopis are best mates who do everything together, including making an appearance on television. Joe, of Bracken Ridge, appears in the latest Anglicare Southern Queensland ad now screening on both TV and in cinemas, and Alex, of Clontarf, has just finished filming for two episodes of an SBS comedy drama ...

Tuesday, 6 December 2016

Dept Human Service Services response on recent DSP hearing


The Department of Human Services has responded to the concerns of Down Syndrome Australia about the recent discussion of Down syndrome at the Disability Support Pension hearing in Canberra.

Down Syndrome Australia appreciates this prompt response but continues to have concerns about the inability of the senior bureaucrat to respond to a question of whether Down syndrome could be cured. DSA will continue to advocate on the DSP as people with Down syndrome should not be required to repeatedly provide evidence of their disability.

Please feel free to send DSA any examples or stories about problems with access to DSP to our info email. DSA will bring these to the attention of the Department and the Minister.

Read the letter DSA sent to the Department (PDF), and the letter received back from the Secretary of the Department.

News and commentary on the NDIS (60)

The official NDIS website provides access to documents, and up to date information about how the NDIS works, and NDIS events such as local workshops and webinars.


NDIS and Me
People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.


Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Through Disability Loop you can:
  • Find a great selection of resources relating to the NDIS
  • Find out how the NDIS is working for other people
  • Have your say about the NDIS
  • Keep up to date with news and events about the NDIS
Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.
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ACCC releases guidance to consumers and businesses in the disability sector
Australian Competition and Consumer Commission, 2 December 2016
The Australian Competition and Consumer Commission has today released guidance to empower people with disability to use their consumer rights when buying goods and services under the new National Disability Insurance Scheme (NDIS) ...

National Disability Insurance Scheme: Western Australia adopts own model
Nicolas Perpitch, ABC News, 2 December 2016
Western Australia will operate a version of the National Disability Insurance Scheme (NDIS) unlike the rest of the country, after it came to an agreement with the Commonwealth over the adoption of a state-run model ...

Abigail Dawson, Mumbrella, 21 November 2016

The National Disability Insurance Scheme (NDIS) has recruited Loud to launch a state-wide campaign featuring NDIS customers.

Hiring workers, ensuring quality: responses from Hireup, Better Caring and My Supports
Libby Ellis, InCharge, 28 November 2016
In short: We’ve got a great conversation going about the ins and outs of new ways people can find support workers. Read on for our latest addition!

Geelong family takes National Disability Insurance Agency to court over NDIS deficiencies
Bethany Tyler, Geelong Advertiser, 1 December 2016
A Geelong family is taking on the National Disability Insurance Agency in a test case push for clearer funding policy ...

Peter Giblisico, On Line Opinion, 2 December 2016

The "movers and the shakers" in disability care, those who are stakeholders in the disability care industry, seek to find a solution that is cheap and safe, rather than one in which a flexible supporting regime can provide the resident with support that maintains the good things that have previously been a part of a life already constrained ...

Carers future uncertain under the NDIS says latest Anglicare report
Carers NSW, 2 December 2016
Launched today, Anglicare Sydney’s 'Carers: Doing it Tough, Doing it Well' report raises concerns about unmet needs of carers under the NDIS. It also indicates the need for more support programs for carers of people with a disability ...
National Disability Services (NDS), 5 December 2016
NDS has today released its State of the Disability Sector Report for 2016, launched in Melbourne as part of NDS’s CEO Meeting. The report paints the compelling picture that while the disability services sector remains committed to the National Disability Insurance Scheme (NDIS), many providers feel uncertain about the future.

Much of the report is based on results from the 2016 Business Confidence Survey (BCS) completed by almost 550 disability service providers. The survey, which focuses on the 2015-16 financial year, highlights the amount of change and growth required by the supply side to fulfil demand under the NDIS ...
  • Note: NDS is the professional organisation representing the interests of disability service providers.

Monday, 5 December 2016

What's happening at Down Syndrome Australia? Here's an update from our CEO, Ellen Sladzien.


The recent public gaffe by a senior Human Services Department official who could not indicate whether Down syndrome could be cured, is just a timely reminder of the importance and urgency of having effective national advocacy to represent people with Down syndrome and their families. There continues to be a serious lack of understanding of Down syndrome and intellectual disability in our community and even amongst government officials.
The last two weeks, I have been focusing on meeting with politicians and senior government officials to advocate on a number of key issues.

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 

    Right Relationship: How to create a partnerships between families and services that really works
    Resourcing Families - presented by Margaret and Jeremy Ward. A free workshop for people with disability, family members and their friends; $50.00 for professionals
    Tuesday 28 February 2017 - Albury
    Wednesday 1 March 2017 - Deniliquin 
    Thursday 2 March 2017 - Griffith 



    The demand for informal care in Australia and across the globe is increasing, and the number of unpaid carers - relative to numbers of older people and people with disability and health disorders - is falling. New ways of supporting families and communities to care and support carers is vital to meeting this demand.

    Abstract submissions must be made electronically via Carers Australia’s online abstract submission system
    Abstracts must be received by 10 February 2017. Notification of Abstract acceptance will be sent on 31 March 2017.



    Friday, 2 December 2016

    Weekend reading and viewing: 3 - 4 December 2016


    Monopoly
    Lizzy Leggat, DSA (UK) Journal #133, Spring/Summer 2016
    When I’m asked what it was like growing up with a sister who has Down’s syndrome, I have often directed people to Emily Pearl Kingsley’s piece ‘Welcome to Holland’, which delivers a very nice analogy from a parent’s perspective. However, as time goes on I realise that it does not detail a sibling’s experience and that there may, therefore, be a gap in the metaphorical market for a piece that does ...
    • There are more excellent articles in this issue of the DSA Journal, and back issues can be downloaded here.
    Self talk
    Adult Down Syndrome Clinic, posted on Facebook, 20 November 2016
    People with Down syndrome frequently talk to themselves.  We have long believed that for our patients this was a method of learning, a coping strategy, a method of amusement when bored, developmentally appropriate and/or other functions.  Uses and benefits are being recognized in those without Down syndrome as well.  This article below shared by Dr. Dominiak reports some interesting findings:
    It turns out – people who talk to themselves aren’t crazy, they’re geniusesGrayson Berman, Sharably, 6 September 2016
    Studies show that talking to yourself can make you learn more quickly, think more efficiently, and boost long term memory ... Many experts and studies have actually done research in order to see how talking to yourself helps. Here’s the top five ways, all backed up by science ...
    • For or more information on self talk in people with Down syndrome, look under Mental Health on the Adult Down Syndrome Center's web page.
    A Father’s Speech to the Diocese of Providence 
    Kevin Alviti, Down Syndrome News, Vol 39, #2, Summer 2016
    ... The greatest gift that my wife ever gave me was the ability to process this news on my own, at my own pace. Not once during this process did my wife say to me, “I am going to have this baby with or without you”  ...
    The Pressure Of Perfection Shouldn't Apply To Children
    Rachel Wong, Huffungton Post (Australian ed), 1 December 2016
    Doctors shouldn't talk in worst case scenarios to mothers of children with Down syndrome. We are all for diversity these days, are we not? Identity is sacred and inclusiveness is the official word on people with disabilities. So why is every effort being made to eliminate certain people with a difference before they are born?

    Doctor Notes: Stop portraying childhood disability as tragic or inspirational
    Barbara Gibson, Toronto Star, 28 November 2016
    By actually listening to disabled people, we realize they are “disabled by” their worlds more than by their bodily differences ...

    Digby Webster and Nathan Basha screened their film Heartbreak and Beauty at a special event put on by The Guardianship Division of the NSW Department of Justice, in celebration of International Day of People with Disabilities. 

    A very cool crowd included Screen NSW's Courtney Gibson (CEO) and Tracey Corbin-Matchett. Digby and Nathan did a great job answering questions on a panel and advocating for people with disabilities.

    Heartbreak and Beauty was made by Bus Stop Films, who also provided the opportunity to present it at the Guardianship Division.

    Photo used with the permission of Bus Stop Films.

    #MyVoiceMyCommunity #WDSD17: World Down Syndrome Day 2017

    Down Syndrome Australia is getting organised for World Down Syndrome Day, 21 March 2017:

    It may still be a few months away, but here at Down Syndrome Australia we are already getting excited about World Down Syndrome Day 2017, and we'd love you to be getting excited about it too!

    In 2017, WDSD will focus on enabling people with Down syndrome (and those who advocate for them) to speak up, be heard and influence government policy and action, to ensure that they can be included, on a full and equal basis with others, in all aspects of society.


    We are encouraging people with Down syndrome to say #MyVoiceMyCommunity and show the world how people with Down syndrome participate in the community alongside everyone else.

    Do YOU want to take part in this fun World Down Syndrome Day campaign? You can tell your story, share your photos and get the message out about Down syndrome at the same time! We need to know if you’re interested by Friday 9 December. Please email info@downsyndrome.org.au as soon as you can!

    #MyVoiceMyCommunity #WDSD17

    Thursday, 1 December 2016

    IDPWD event at Art Gallery of NSW next Wednesday


    Front Up Artists Talks event at the Art Gallery of NSW in celebration of International Day of People with Disability - Emerge program artists will feature in Art After Hours at the Art Gallery of New South Wales at 6.30 pm Wednesday 7th of December 2016.
    Tonight Art After Hours celebrates International Day of People with Disability. Start with a panel of four artists from the Front Up Emerge Program as they discuss their process of creating a collaborative art installation at Barangaroo.

    'Australia's human rights record blemished by punitive approach to migrants' - UN rights expert

    Down Syndrome Australia has called attention to the UN's views on immigration discrimination in Australia:

    The United Nations Special Rapporteur on migrants has recommended that the exemption of the Migration Act from the Disability Discrimination Act be repealed, saying that children/family members with disability should not be considered a health risk, preventing their settlement in Australia.

    Down Syndrome Australia heartily endorses this recommendation, and thanks Francois Crepeau for his important work and calls on the Australian government to take action.

    From the overview of the report:
    CANBERRA / GENEVA (18 November 2016) – United Nations Special Rapporteur François Crépeau today warned that Australia’s human rights record has been tarnished in recent years by migration policies which have increasingly eroded the rights of migrants, in contravention of its international human rights and humanitarian obligations ...  Australia's human right record blemished by punitive approach to migrants - UN rights expert
     From the full text of the End of Mission Statement:
    Family reunionThe right to live with one’s family is a fundamental right for all, Australians and non-citizens alike. It is in the best interest of the child to live with both their parents and separation for long periods of time has a huge impact on the development of children left behind. Barriers to family reunion should thus be lifted at all levels and family unity should be systematically fostered and actively facilitated. Families should never be separated for immigration purposes for long periods of time. In particular, families of vulnerable migrants should never be separated at all. Family reunion should be available to all permanent residents, as well as to all temporary migrant workers who effectively spend more than one year in Australia. Children should always benefit from the most favourable immigration status offered to one or both of their parents, in order to guarantee family unity. Moreover, children or family members with disabilities should not be systematically considered as a health risk preventing the child or the family from settling in Australia ...
    (1-18 November 2016)

    Wednesday, 30 November 2016

    Research news and commentary #12 for 2016

    Culture in Better Group Homes for People With Intellectual Disability at Severe Levels
    Christine Bigby and Julie Beadle-Brown, Intellectual and Developmental Disabilities: October 2016, Vol. 54, No. 5, pp. 316-331.
    Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services ...
    • The full text is available without charge online.
    • Note that this article builds on two earlier articles about culture in group homes, cited in this article.
     Do Equine-assisted Physical Activities Help to Develop Gross Motor Skills in Children with the Down Syndrome? Short-term Results
    Sergiy Voznesenskiyet al, Procedia - Social and Behavioral Sciences, Volume 233, 17 October 2016, Page 508
    Background. Equine-assisted physical activities are believed to improve the physical, psychological, and social wellbeing of special needs populations. Methods. A study was conducted to assess the effect of an equine-assisted physical activity and an adaptive horseback riding program in comparison with conventional adapted physical education designed to develop gross motor skills measured by the Gross Motor Function Measure (GMFM-88) in children with Down syndrome in a special education institution ...
    • The full text is available without charge online, under a Creative Commons Licence.
    Non-invasive Prenatal Testing and the Unveiling of an Impaired Translation Process
    Blake Murdoch et al, Journal of Obstetrics and Gynaecology Canada,
    Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the economic and near-future clinical benefits of NIPT have been overstated and the potential limitations and harms underplayed. NIPT, therefore, presents an opportunity to explore the ways in which a range of social pressures and policies can influence the translation, implementation, and use of a health care innovation ...
    • The full text available without charge online 
    Assessing health needs of children with intellectual disabilities: a formative evaluation of a pilot service
    Jacqueline Milne, et al, Research and Practice in Intellectual and Developmental Disabilities, Published online: 18 May 2016
    Children and adolescents with intellectual disabilities commonly have unmet complex health needs. Their parents often experience barriers in locating and accessing services to assist in diagnosing and managing those needs. In response to this service gap, a pilot Paediatric Assessment Clinic was established under the auspices of a large paediatric hospital, to offer a comprehensive disability health service for children aged 6 to 18 years with intellectual disabilities and complex health needs ...
    Together
    Cambridge Intellectual and Developmental Disabilities Research Group, Cambridge University, 17 May 2016
    A group of Cambridge University researchers have made a film alongside people with Down’s syndrome to show that there is only one way we can defeat dementia; Together. Researchers from the Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG) have been investigating the links between Down’s syndrome and dementia for almost two decades. Most recently, they have focused their efforts on using state of the art imaging techniques to look at the brains and the eyes of people with Down’s syndrome in the hope of finding a biomarker for Alzheimer’s disease ...


    Tuesday, 29 November 2016

    Creatability on iView long term collection

    The complete first series (9 episodes) of Creatability is available on ABC iView until 27 November 2019:
    Artists with disabilities reveal the places and perspectives driving them to create. From textiles to dance, these portraits of artists creating in regional NSW were produced by independent filmmakers from across the state.
    The first episode features a young man with Down syndrome, Kayah Guenther:
    20 year-old artist Kayah Guenther explores his strength and masculinity through dance. Working alongside esteemed choreographer, Gavin Webber, this film explores identity, vulnerability and power through movement.
    Another young man with Down syndrome, Lydian Dunbar features in Episode 8.

    2016 Don't DIS my ABILITY: I can, I am campaign

    Monday 21, November to Sunday, 11 December 2016
    International Day of People with Disability (IDPWD) is celebrated annually in NSW with the Don't DIS my ABILITY campaign. It encourages communities in NSW to think and act inclusively, in all aspects of life.

    This year’s Don’t DIS My ABILITY Campaign, ‘I Can, I Am’ celebrates people with disability who have overcome barriers to reach meaningful jobs. 
    Don’t DIS My ABILITY seeks to inspire and build confidence in people with disability to find employment, but also challenges the public to re-evaluate their attitudes around the employment of people with disability. 
    The campaign runs in conjunction with The International Day of People with Disability celebrated annually on 3 December. Join the conversation on Facebook @dontdismyability and watch the employment stories of Heidi, Iz and Nathan in film - all of the videos are also on the Don't DIS my ABILITY home page.

    Monday, 28 November 2016

    Bus Stop Films: expressions of interest for 2017

    Interested in studying with Bus Stop Films next year?

    We're now taking expressions of interest for our Beginners and Intermediate courses for people with an intellectual disability.
    Our courses will be held at the Australian Film Television and Radio School.

    For more info, email hello@busstopfilms.com.au

    Down Syndrome NSW 2017 education conference: save the date

    EMBRACING SUCCESS - Breaking Barriers 
    Thursday 23 and Friday 24 March 2017 
    SMC Conference and Function Centre, Goulburn Street, Sydney 
    Featuring Dr Rhonda Faragher, Dr Kelly Burgoyne (formerly of Down Syndrome Education International) and leading professionals from within the NSW Department of Education and Training and the Catholic Education Office, plus much more ... 
    This is an essential 2 day conference for anyone working with a student with Down syndrome and suitable for educators working in all education sectors.
    Parents and carers are also welcome.
    Booking details and early bird registrations will be available shortly.

    Friday, 25 November 2016

    Weekend reading and viewing: 26 - 27 November 2016



    To speak out, people with intellectual disability need to see other people with intellectual disability using their voice ...

    To support participation of people with Down syndrome you need to give them time - to plan, prepare and grow into work ...
    Michael Sullivan, 
    November 2016, Darwin


    Catalyst 2016 
    Accessible Arts, 16 November 2016 
    The Catalyst Dance Residency was a national artist development program across 2015 and 2016 supporting 14 dance practitioners with and without disability who demonstrated commitment to integrated dance practice.

    The program comprised a 7-day Skills and Career Development Residency in year one held at Carriageworks and a 6-day Choreographic Research Lab Residency in year two held at Critical Path.

    Full information on the program can be found on the Accessible Arts website, here.




    Guy Lodge, Variety, 22 November 2016
    Maite Alberdi's sensitive, good-humored study of Down's Syndrome adults expresses anger against the system with a light touch ...Though Alberdi’s short, audience-friendly film offers plenty of sweetness and light observational humor, the sad anger of its message still burns through; international distribution, particularly on VOD platforms, is quite feasible ... One to look for on the festival circuit.

    Recommended online periodicals
    Joan Medlen (dietician and wellness coach, author of the Down Syndrome Nutrition Handbook) recommends the latest issue of the online newsletter Impact published by the Institute on Community Integration at the University of Minnesota - a feature issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities.
    'This new issue in the redesigned Impact series shares articles from around the country that profile exemplary strategies for delivery of services; educate about the guiding principles and choices that must be examined in policy and practice; and tell personal stories of the difference that person-centered positive supports make for people', Editorial.

    Hand in Hand, the newsletter of the Down Syndrome Research Foundation in Vancouver, is published four times per year in March, June, September and December. 
    Opening doors for students with disability
    Every Australian Counts, 10 November 2016
    A program at Sydney University is giving young people with intellectual disabilities the opportunity to experience life as a uni student ...

    Predicting and Preventing Leukaemia in Children with Down Syndrome: The PreP 21 Study

    The Board of Down Syndrome NSW supports participation in this research project, coordinated by Sally Byatt at Sydney Children's Hospital, Randwick:

    The Kids Cancer Centre at the Sydney Children’s Hospital Randwick in NSW is currently running an exciting new Australian study called Predicting and Preventing Leukaemia in Children with Down Syndrome (The PreP 21 Study).

    The aim of The PreP 21 Study is to devise a method of predicting which children will later develop leukaemia. If successful, this study may form the basis for a later therapeutic trial to prevent babies with Down syndrome developing leukaemia, with enormous potential impact on the many other types of child cancer which have a prenatal origin.

    The researchers would like to invite children in NSW with Down syndrome between the ages of 0 – 2 (from birth up to the third birthday) to have the chance to take part in the study. Participants will be followed up until the age of 4 years.

    It is anticipated that the study will become available for ACT residents in the near future.

    If you are interested in having your child take part in The PreP 21 Study or would like further information, please contact the study by:

    Telephone: 0410 346 294
    Email the Study Co-ordinator, Ms Sally Byatt: sallyanne.byatt@health.nsw.gov.au
    Or visit the study website

    Thursday, 24 November 2016

    Special Olymics Trans Tasman Tournament: good luck!

    People with Down syndrome will be well represented at the third Trans Tasman Tournament from Friday - Sunday this week. The NSW team is flying to New Zealand today. Good luck to all the athletes:
    From 25-27 November 2016, 120 Australian athletes with an intellectual disability will represent their state/territory at the third Trans Tasman Tournament in Hamilton, New Zealand. 
    Athletes will compete in aquatics and athletics in a celebration of achievement and sportsmanship. For many athletes this will be their first taste of international competition with many of them being part of a travelling team for the first time ever!
    Check out who's in the team from the Special Olympics Australia website, here, and offer support if you can.

    Lots of photos on Special Olympics Australia's Facebook page in the lead up and throughout the tournament.


    “Value who you are. You have lots to say and lots to achieve” : Michael Sullivan

    Last week 20 Down Syndrome Australia Board Directors and state Executive Officers and one very pregnant administration coordinator braved the humidity and heat of Darwin in November for their Annual General Meeting. 
    ... On Friday, our AGM and board meeting was held at the Members and Guests Lounge at Parliament House and we were fortunate enough to have three speakers present to us: 
    • the Honourable Jane Prentice, Assistant Minister for Social and Disability Services 
    • Michael Sullivan, Chairperson of NSW Council for Intellectual Disability (CID), and 
    • Suresh Rajan, President of the National Ethic Disability Alliance (NEDA). 
    All three presenters were wonderful and we sincerely appreciate their contribution to our AGM. Thank you! 
    But for anyone who, in particular, doesn’t know who Michael Sullivan is, we feel you should.
    Michael is not only the Chair of NSW CID, but he is also on the NDIA reference group on intellectual disability, a member of Australia wide advocacy group OUR VOICE, and has recently been appointed the University of New South Wales Ambassador for Healthy Aging. 
    Michael also has Down syndrome ... read more about the meeting and Michael's contribution here, on the DSA News page.
    On Friday (18 November 2016, DSA posted its thanks to Suresh Rajan for his work in immigartion, on Facebook:

    Down Syndrome Australia was delighted to welcome Suresh Rajan to speak at our AGM today about immigration and disability. 
    The Australian Down syndrome community has long been a staunch and unwavering advocate for changes to our discriminatory immigration laws and has supported and advocated for people with Down syndrome and their families to have equal opportunity with others to migrate to Australia. 
    In recent times, we have enjoyed the support and expertise of Suresh in our endeavours. With his passion for human rights, experience as President of the National Ethnic Disability Alliance, President of West Australians for Racial Equality, member of People with Disabilities Australia board, prolific commentator on social justice and human rights, and much more, not to mention being a really nice guy, he is a much valued ally.

    Wednesday, 23 November 2016

    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 
      ‘Understanding Abuse’ and 'Staying Safe' forum
      National Disability Services, NSW CID and the NSW Ombudsman invite you to attend a free forum about human rights, safety and preventing abuse and neglect of people with disability.

      Representatives from VALID will talk about their Staying Safe program for people with disability. Staff from NDS’s Zero Tolerance Initiative will also talk about the free new Understanding Abuse online training and tools for disability service providers.

      Who should come to the forums?
      People with disability, direct support staff and supervisors are invited to both sessions. You can also choose the session that is best for you.

      The event is free, but please RSVP to let us know you're coming via the eventbrite link 
      10am - 1 pm Monday 28 November 2016 - West Ryde


      International Day of People with Disability - free event:

      This is not just your average night at the movies. Arriving on the red carpet will be like walking onto a live stage, with music and live performances, before a night of film to celebrate International Day of People with Disability! 
      It’s an event not to miss, with a stellar line up including Paralympian Dylan Alcott, Actor Alex Jones and key talent yet to be announced. To top off the night we will hear from NSW filmmaker Sofya Gollan and have the opportunity to watch her locally made, award-winning short film Gimpsey. 
      Tickets are FREE and canapés and refreshments will be served.
      • Register Now for you and a friend, so you don’t miss a cracking night of entertainment and film!
      This is a featured event and showcase for this year’s Don't DIS my ABILITY campaign. 
      For information about IDPWD events in NSW, visit the Don't DIS my ABILITY website.


      Access All Areas Film Festival:

      Event Cinemas 159 - 175 Church St Parramatta
      11 am   Screening with audio description
      11.10 am Screening with open captions
      11.30 am  Relaxed screening with chill out space next door
      RSVP: eventbrite.com.au or IDEAS freecall 1800 029 904  or SMS 0458 296 602

      All program and venue information Access All Areas Film Festival 2016
      across NSW

      Shaping our future: discussions on disability rights: Albury
      Alistair McEwin, Disability Discrimination Commissioner - come along and provide your input to the proposed priorities of the Australian Disability Discrimination Commissioner. Once you have registered for a consultation you will receive email updates that will include: the discussion paper, an agenda, and other relevant information about the consultations.


      The venues for the consultation will be accessible. Auslan interpreters will be available. Please advise us as soon as possible if you have any other accessibility requirements.
      10:30 am – 1:00 pm Monday 12 December 2016 - Albury NSW

      Down Syndrome Australia responds to Lateline Story on prenatal testing and support


      The story broadcast on Lateline  (ABC TV 1) last night highlights the need for better information and support for families who receive a high probability result of Down syndrome during their pregnancy. Many parents in the Down syndrome community have said that the information they were given was outdated or focused on a very negative portrayal of what it is like to have a child with Down syndrome.

      The Lateline story not only presents the experiences of parents, but very importantly features Nathan Basha, eloquently voicing his perspective as a person with Down syndrome. 


      The 22 November 2016 episode of Lateline is now available online until 10:30pm on 6 December 2016. The segment starts at 3m 14s.

      This media release also gives an update on Down Syndrome Australia's current work in this area, and provides links to some of the resources we have produced for parents and health practitioners:

      The story broadcast on Lateline (22 November 2016)  highlights the need for better information and support for families who receive a high probability result of Down syndrome during their pregnancy. It is essential that good information is provided to support informed decision making in regards to testing and responding to the results. 
      While the study discussed in the broadcast is not scientific or peer-reviewed it provides a description of the experience of a number of women and warrants further investigation. Given the very preliminary nature of the survey and the fact that it was conducted by a private individual we will not comment further on the results. 
      Down Syndrome Australia is proactively engaged in advocating to government, relevant medical organisations and professional bodies including the Australian Medical Association to promote better information and support for families with regards to prenatal testing. We have developed an evidenced-based submission which will be provided to the Medical Services Advisory Committee as part of their consideration of listing the non-invasive prenatal testing on MBS. 
      As the only national voice for people with Down syndrome, we will continue to work collaboratively with the sector to achieve better support for families.

      There is evidence from a range of sources that suggest that often women are not being provided with adequate information both prior to and after the screening tests are completed. Feedback from the Down syndrome community suggests that in many cases the information provided to families is outdated or focused on a very negative portrayal of what it is like to have a child with Down syndrome. 
      Some families who choose to continue their pregnancy after a high probability result indicate that they do not feel supported by the medical community and that termination is repeatedly offered despite a clear decision having been made. This is highlighted in the story tonight with one of the families indicating they felt “pressured to terminate”.
      It is imperative that the medical community provide appropriate counselling and support regardless of the decision to continue or to terminate a pregnancy. It should be acknowledged that many doctors and midwives do support families who have a high probability result for Down syndrome with good information and provide excellent support during the pregnancy. 
      Down Syndrome Australia recommends that the Government support a national training program for GPs and midwives who are providing pre and post screening counselling to ensure that they are skilled at providing informed consent and appropriate post screening counselling. 
      More information about the work of Down Syndrome Australia and the contact details for local support and services can be found on our website.

      Tuesday, 22 November 2016

      World Festival of Magic tickets: free for DS NSW members

      Thanks to the Lion's Club of Bondi, we have FREE tickets to the World Festival of Magic on Monday 19th December 2016 (11am, 1.30pm and 4pm) for Down Syndrome NSW members.

      If you would like FREE tickets to this event please email our office at events@dsansw.org.au with your details. We have a limited number of tickets so distribution will be on a first in first served basis.

      See you there!

      News and commentary on the NDIS (59)

      The official NDIS website provides access to documents, and up to date information about how the NDIS works, and NDIS events such as local workshops and webinars.


      NDIS and Me
      People with Down syndrome and/or their families and carers can join the closed Facebook Group, NDIS and Me, for discussion specifically about the NDIS and people with Down syndrome.


      Disability Loop - a way to find out more about the National Disability Insurance Scheme (NDIS). Through Disability Loop you can:
      • Find a great selection of resources relating to the NDIS
      • Find out how the NDIS is working for other people
      • Have your say about the NDIS
      • Keep up to date with news and events about the NDIS
      Disability Loop is a project funded by the NDIS. It is run by, and for, people with disability and their allies.

      Two other closed Facebook groups (only members can see the posts) that you might find useful for answering particular queries are:

      • NDIS Grassroots Discussion - a large group run for and by people with all kinds of disabilities, and welcoming of carers - the administrators are very experienced in managing discussions that can become robust at times, as criticism of the NDIS is raised
      • the newer and smaller I Love NDIS started recently to promote discussion individual's successes in putting their plans together and implementing them. 
      Counting what counts surveys 
      Julia Farr Association
      We have had a significant response to the first Counting What Counts survey but it's not too late to have your say.

      If the NDIS is to be really helpful in people’s lives, it needs to be shaped in line with what people living with disability need to live a rich and meaningful life.

      Currently, much of the NDIS development is focused on how service providers make the move to the NDIS. This creates a risk that the NDIS market will reflect what providers need, not what people and their families need.

      Counting What Counts is a series of surveys to find out more about what people living with disability, their families and supporters, want. JFA Purple Orange will publish the survey results, so people can use the information to make sure the NDIS is implemented well.



      2016 NDIS supporter survey
      Every Australian CountsTell us what you think about the NDIS.

      People with disability, their families and carers and the service provider sector must have an NDIS that’s the best it can be.

      That means letting our decision makers know what’s working, what isn’t and what needs to be done to make it better.

      We’ll be releasing our first Every Australian Counts Community Report Card in December and we need you to shape it.

      This is your NDIS. Fill out this simple survey to make sure you have your say.
      Information, linkages and capacity building
      National Disability Insurance Scheme, 9 November 2016
      The NDIS has released the Information, Linkages and Capacity Building Framework (ILC). The ILC includes:

      Personal capacity building – this is about making sure people with disability and their families have the skills, resources and confidence they need to participate in the community or access the same kind of opportunities or services as other people. 
      Community capacity building – this is about making sure mainstream services or community organisations become more inclusive of people with disability ...
      The ILC Toolkit is designed to help organisations get ready for ILC - it was released on 21 November 2016.

      The National Disability Insurance Scheme: a quick guide
      Luke Buckmaster,  Parliamentary Library (Australia), 1 September 2016
      This five page 'Quick Guide' from the parliamentary Library could be a useful for those who are hearing about the NDIS for the first time, either as participants, family members, carers or potential service providers or support workers.
      Community Disability Alliance Hunter (CDAH), 11 November 2016
      A video about the NDIS and the importance of peer support. Made by people with intellectual disability for people with intellectual disability. 9 m 30s

      National Disability Insurance Scheme struggling to meet enrolment targets, report shows
      Norman Hermant, ABC News, 14 November 2016
      The first quarterly report from the National Disability Insurance Scheme (NDIS) transition phase shows the scheme came nowhere near to hitting its original estimates for enrolees ...
      Every Australian Counts, 16 November 2016
      The first quarterly report covering the NDIS transition phase has been released. Here’s what you need to know.

      Monday, 21 November 2016

      Accessible Arts Newsletter: November 2016

      Accessible Arts November news is full of great announcements and opportunities for the arts and disability sector in NSW:

      • InternationalDay of People with Disability
      • Sydney New Year's Eve for everyone
      • Don't DIS my ABILITY 2016
      • 2017 Artist with Disability Fellowship
      • Performing Arts Summer School 2017
      • Events
      • Featured arts + disability videos
      • Auslan Interpretation of eNews
      • Accessible Arts | Facebook | Twitter | Instagram

      Voice: November 2016

      Down Syndrome Australia publishes the print-only national journal Voice three times a year.

      Subscription to the national journal is a membership privilege only, and is included in the membership fees of Down Syndrome New South Wales, Down Syndrome Victoria, Down Syndrome Western Australia, Down Syndrome South Australia, Down Syndrome Tasmania and Down Syndrome Association Northern Territory.


      In the November 2016 issue released last week:
      • Is this the right service for me?
      • Baby steps to independent living
      • Preparing for supported living
      • In dependent living - from Jesse's dream to our reality
      • Independent living - living in rural Tasmania
      • Protective behaviours
      • NDIS and you
      • IASSIDD workshop review
      • Endocrine conditions in Down syndromeOur Voice
      • My Voice
      • Book Review
      • Our adoption story
      Enquire about membership/subscription with your local Sate Down syndrome organisation (links above).

      Friday, 18 November 2016

      Weekend reading and viewing: 19 - 20 November 2016


      How Viral Videos Shape Perceptions of People With Down Syndrome
      Theresa Versaci, The Mighty, 10 November 2016
      ... The average person’s understanding of Down syndrome spans the depth of a single unit of course content, but more concerning to me is another means through which people are exposed to Down syndrome: the viral video ... The “Cuteness Factor” serves as click bait, drawing the person into these stories and videos ...
      Arthur Lauretano, 30 October 2016
      The medical record perplexed me. “Unfortunate 33-year-old-man with Down Syndrome here for routine visit for ear wax removal.” ... He brought in an envelope full of records from his prior ear, nose, and throat doctor. Each visit was documented with an entry that began with, “Unfortunate 33-year-old man with Down Syndrome.” ... All of this patient’s records described him as unfortunate ... But the patient sitting in front of me ... was in excellent shape ...

      We are all equal
      Paul Critchlow,  Orange Juice Flavour Sky, 30 October 2016
      There has been much written and said about Down’s syndrome over the last month or so leading up to, and since, Sally Phillips’ documentary A World without Down’s Syndrome. Some of what I’ve read has been balanced and fair, recognising that the discussion Sally has started is not an easy one for some to join in but some of what has been printed has been defensive knee-jerk reactionary nonsense from some people who should know better ...

      France's censorship of award winning World Down Syndrome Day video to be chhllenged in the European Court of Human Rights
      Catia Malaquias, Starting With Julius, 12 November 2016
      France’s Conseil D’Etat has upheld the decision of France’s television regulator to censor the video “Dear Future Mom” and stop it from being shown on French television ... A French Down syndrome organisation, Fondation Jerome Lejeune, which brought the action against France’s television regulator and was a partner in the video campaign has said in a media release that the decision to ban the video from French television was taken after two complaints were received from women who had terminated their pregnancies after being told their babies had Down syndrome. It is reported that the women found the video confronting as the people with Down syndrome in the video were ‘too happy’ ...

      Bundaberg disability group kicking down barriers through martial arts
      Ross Kay and Brad Marsellos, ABC Wide Bay, 31 October 2016
      If you are young, old, even in a wheelchair, a group in Bundaberg in Queensland is working hard to show that martial arts are for everyone by kicking down barriers around disability ...

      People with disability underrepresented in politics: advocate
      Emily baker, The Age, 11 November 2016
      Some political parties are attempting to improve diversity by targeting the representation of women and culturally diverse, Indigenous and LGBTI people.

      But Disability Leadership Institute founder Christina Ryan says one group – Australia's largest minority – is consistently missing from the conversation ...

      NSW Council on Intellectual Disability is 60!

      The NSW peak body representing the interests of  people with all types of intellectual disability, the NSW Council on Intellectual Disability, is celebrating its 60th anniversary this week - a major milestone.

      '... we should acknowledge those people who 60 years ago saw the need
      for the council' - Jeanette Moss, quoted in the anniversary announcement
      on the NSW CID website.
      We would like to join the congratulations and acknowledgement of this very substantial body of work, during a long period when attitudes and supports have evolved markedly.

      Today, NSW CID is leader in inclusion and advocacy, including self-advocacy, working prominently in fields such as health, particularly advocating for mental health services for people with intellectual disability, and in both monitoring and promoting the implementation of the National Disability Insurance Scheme in the interest of people with intellectual disability, and all aspects of inclusion.



      Thursday, 17 November 2016

      Siblings Australia: Adult Sibling Survey

      Please help to spread the word about this survey from Siblings Australia:

      Are you a sibling of someone with disability? *

      Siblings Australia would love to hear from you!

      Or do you have an interest in people with disability? We hope you will spread this information amongst your networks so we can reach as many adult siblings as possible.

      This survey is part of Siblings Australia’s new project - Creating Capacity: Support for Adult Siblings. The survey will help us make decisions about the project and let us know what you want.

      It also gives you an opportunity to get involved in the project.

      The project is about adult siblings of people with disability. Adult siblings are brothers or sisters of people with disability who are 18 years of age or older.

      The project will develop online resources for adult siblings about the NDIS and the different roles that siblings might play in supporting their brother or sister with disability. It will also develop opportunities for peer support and mentoring between adult siblings.

      Siblings Australia is a national organisation that is committed to improving the support available for siblings of children and adults with disability, chronic illness and mental health issues.

      Please click on this link which will take you directly to the survey.

      We hope to have all responses by early December 2016, and we would appreciate you completing the survey as soon as possible. Please pass on the survey to any sibling of a person with disability who you think will be interested in taking part

      We will shortly be sending out information about volunteering to be a Peer Support Group leader. If you are interested in this, please click the link in the comments below to join the Siblings Australia email alert and we will keep you informed.

      If you would like more information, please contact Kate Strohm, Director Siblings Australia on kate@siblingsaustralia.org.au

      *In this context, the word disability includes people with disability, chronic illness and mental health issues.