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 canap├ęs 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.

    Employment matters

    What people with intellectual disability think about work - research report
    Rosemary Kayess et al, Social Policy Research Centre (UNSW), 2016
    The Social Policy Research Centre was commissioned to examine the experiences people with intellectual disability have with different employment models. The study commenced in July 2015 and finished in 2016. Data was collected from 51 people with intellectual disability working in open employment, Australian Disability Enterprises (ADEs) and social enterprises. The reports highlight their experiences of choosing, finding, maintaining and changing employment, their likes and dislikes about their jobs and outcomes they achieve from working.
    • Three publications from a UNSW research study, including an easy-read report
    Robert Vurtue, 1233 ABC Newcastle, 15 November 2016
    A non-profit cafe in Newcastle is expanding its services after high demand from people with a disability wanting to learn hospitality skills ...

    Australia going backwards on disability employment
    Maurice Corcoran, RN Breakfast, ABC Radio National, 8 November 2016
    A disability advocate is calling for a greater focus on employment for people with disability, warning Australia has gone backwards in the past 15 years.

    South Australia's Principal Community Visitor Maurice Corcoran has been recognised with a national award for three decades of work improving the lives of people with disability.

    He's urging the federal government to do more to empower people through employment.

    • Audio file 9m 20s

    Wednesday, 16 November 2016

    Inclusion Australia: People with intellectual disability need quality mental health services not to be ignored

    Posted by Inclusion Australia, 15 November 2016:
    The Commonwealth Government has just release the National Mental Health Plan for comment, and people with intellectual disability are not even mentioned in the 77 page draft. This omission defies belief in view of the terrible mental health disparities experienced by people with intellectual disability and the highlighting of the need for action on these in recent years. 
    We urge you to speak up for people for people with intellectual disability! 
    See www.health.gov.au/internet/main/publishing.nsf/Content/mental-fifth-national-mental-health-plan for how you can have your say – by going to a consultations meeting, filling in a feedback survey or making a submission.
    Read the full Inclusion Australia post for more information on why people with intellectual disability must be included, and priority arguments.

    People with Down syndrome


    Dance and drama
    Kate Powell, Down's Sydrome Association (UK), 2 November 2016
    In dance we are showing a lot of feelings and emotions and building characters within dance, and drama as well. To show people what we do, that’s why we do our own shows that we love doing together as a group, we love an audience!

    Karate competitor inspiring teammates at worlds
    Michele Jarvie, Calgary Herald, 29 October 2016
    A Calgary karate competitor has claimed a silver medal at the world championships held in Austria Saturday. But even though she fell just short of the gold, Natalie Olson has won the admiration of her club back home. Olson, 28, is a first-degree black belt, and was competing in her second world championships in the para-karate (intellectual disability) category ...
    Ginette Davies, CornwallLive, 27 October 2016
    A teenager with Down's syndrome has become the first at a sailing school for the disabled to achieve a top qualification. Rory Davies has spent three years training with Mylor Sailability. The 18-year-old from Truro has not missed a session in three years since attending an open day run by the charity and deciding he really enjoyed sailing ...

    A unique view of St Paul's animals for young explorers - by a special artist
    St Paul's Cathedral (London), 27 October 2016
    We asked Reuben Coe, who was born with Down Syndrome, to draw a map - "I can do that!" he said.

    The new Young Explorers' Map features many of St Paul's weird and wonderful animals, including an owl, camel and lots of Reuben's favourite lions. The map also has text in Reuben's Font - a design based on Reuben's handwriting ...
    • Find out more about Reuben and download Reuben’s Font at his website
    Hold the phone! "Sammy Calls" is a huge hit
    Jeff Zeverly, CBS8
    Imagine recording a conversation with a loved one and sharing it with the world - every week. In Friday's Zevely Zone, Jeff traveled to Solana Beach where a sister has launched a podcast for her brother with down syndrome.

    Tuesday, 15 November 2016

    DSA submission on eligibility for Disability Support Pension

    Down Syndrome Australia has written a submission to a Federal Government committee on Qualifying for the Disability Support Pension

    DSA has appealed for Down syndrome and other related chromosomal disorders to be included in the List 1 conditions which provide eligibility for 'Manifest grants of DSP' which removes the requirement for a job capacity assessment as well as further medical reviews.

    Submission to Joint Committee of Public Accounts and Audit regarding the DSPDown Syndrome Australia, 4 November 2016

    Service, Support and Success: November 2016 issue

    Service, Support and Success is a monthly international journal for direct support professionals, published in Canada. Each issue features a single substantive article focussed on a practical aspect of direct support.

    As more staff are recruited to support people with disabilities with funding from the National Disability Insurance Scheme, they will be interested in locating such good quality resources, to establish good practice, and as education and training resources.

    The journal is available free via email subscription or through a website (link below). Here is the link to the latest issue:
    Celine Parent, Tammy VanderWier, Elizabeth Wedderspoon, Service, Support and Success, Vol 5, Issue 11, November 2016
    ... What about if things change? What do we do if someone we support decides that they want to take a college class? Or join the local gym? How can we help them turn the unfamiliar into the familiar? How do we help them learn the routines and the social norms of this new place so that they can feel comfortable? ...

    Answers to FAQ’s about the journal
    1) The journal is intended to be widely distributed; you do not need permission to forward. You do need permission to publish in a newsletter or magazine.

    2) You may subscribe by sending an email to dhingsburger@vitacls.org

    3) We are accepting submissions. Email article ideas to either the address above or to anethercott@handstfhn.ca
    4) We welcome feedback on any of the articles that appear here.

    Monday, 14 November 2016

    Views from the broader disability community

    Becoming Disabled
    Rosemarie Garland-Thomson, New York Times, 19 August 2016 
    Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed. I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.

    My friend’s comment was meant as a compliment, but followed a familiar logic — one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys” ...


    This is what it feels like to be prayed for because of my disability. And it's not ok
    Carly Findlay, 29 August 2016
    On a recent Friday evening, I finished work with the excitement of a weekend full of reading and cooking. I headed down to my local bookstore on the tram before going home. While I was on the tram, a woman offered me a seat. I smiled and thanked her but shook my head. I was only going a couple of stops.

    That same woman followed me out of the tram, into a small shopping mall and down an escalator. As I browsed books, she tapped me on the back and whispered "I followed you here. Jesus loves you, beautiful. Jesus loves you."

    This, no matter how well meaning, is not ok. Unwanted prayers are misplaced good intentions ...

    Reading material on ageing and Down syndrome:

    The (US) National Down Syndrome Society has co-hosted two conferences on aging and Down syndrome. Full conference presentation videos and slides on their website
    Alzheimer’s disease in people with Down’s syndrome: the prospects for and the challenges of developing preventative treatments
    Paula Castro, Shahid Zaman, Anthony Holland,
    Cambridge Intellectual and Developmental Disabilities Research Group, Department of Psychiatry, University of Cambridge, Cambridge UK
    Journal of Neurobiology (open access Neuro Update), 24 October 2016
    Abstract: People with Down’s syndrome (DS) are at high risk for developing Alzheimer’s disease (AD) at a relatively young age. This increased risk is not observed in people with intellectual disabilities for reasons other than DS and for this reason it is unlikely to be due to non-specific effects of having a neurodevelopmental disorder but, instead, a direct consequence of the genetics of DS (trisomy 21). Given the location of the amyloid precursor protein (APP) gene on chromosome 21, the amyloid cascade hypothesis is the dominant theory accounting for this risk, with other genetic and environmental factors modifying the age of onset and the course of the disease. Several potential therapies targeting the amyloid pathway and aiming to modify the course of AD are currently being investigated, which may also be useful for treating AD in DS. However, given that the neuropathology associated with AD starts many years before dementia manifests, any preventative treatment must start well before the onset of symptoms. To enable trials of such interventions, plasma, CSF, brain, and retinal biomarkers are being studied as proxy early diagnostic and outcome measures for AD. In this systematic review, we consider the p and their evaluation.
    • The full text of the article is available to read online without charge.
    • Citation: Castro, P., Zaman, S. and Holland, A. J Neurol (2016). doi:10.1007/s00415-016-8308-8

    Friday, 11 November 2016

    Weekend reading and viewing: 12 - 13 November 2016


    Down syndrome answers
    Canadian Down Syndrome Society, November 2016
    The best people to answer questions about Down syndrome are people with Down syndrome. We found the most-asked questions on Google and asked 10 Canadians with Down syndrome to give their answers.

    Looking Back on a Down Syndrome Diagnosis 4 Years Later

    Dan Sheehan, Medium, 9November 2016
    This is a story I have been meaning to tell in full for quite some time, because I too was once in a position on the other side of that screen looking for advice, answers, and some way to make sense of the onslaught of emotions and uncertainty raging through me at the time. Know that this is nobody’s fault, you are not alone, many have been where you are right now, and many will be in the years to come. As of this writing my youngest daughter, Teresa, is four years old (today is her birthday) which has put me on this path for a little over four years now ...

    To Myself on the Day My Son Was Diagnosed With Down Syndrome
    Nicole DiGiacomo, The Mighty, 7 November 2016
    I constantly wish I could go back to that day. Sit down and talk to myself when I first heard the words “Down syndrome.” When the blood test came back, and then the amnio. I remember the gut-wrenching feeling like it happened just this morning ... I write to tell you the real story — what really happens after you get a Down syndrome diagnosis ...

    'My Feral Heart' review – life after keeping mum
    Wendy Ide, The Guardian (UK), 6 November 2016
    A terrific central performance from Steven Brandon, a young man with Down’s syndrome, is the driving force of this heartfelt British independent picture. In a neat reversal of expected roles, Luke (Brandon) has become the care-giver for his prickly but loving mother. However, when she dies, the authorities ignore the fact that he can and does live independently and shunt him into a residential care home. A sequence in a car, in which the camera rests on Luke’s face as he mourns both his lost mother and lost independence, is achingly poignant and beautifully acted ...
    • This movie has just been released in cinemas in the UK - we'll be looking out for it to be available here in Australia.
    Review: Finding a way' by Graeme Innes
    Kevin Bain, Independent Australia, 08 November 2016
    This was the election slogan for Tony Clark, a blind candidate for the ALP in the recent federal election. It’s no surprise that lesser-sighted people will use their other senses to greater effect to “find a way” as Graeme Innes AM puts it in his autobiography ... There’s forthright inside commentary here about the personalities and trials of government and politics – the sausage making we call the legislative process – and his aspirations for people with disabilities. The “invisibility cloak” he talks about – where the waiter/shopkeeper/taxi driver talks to the person with him (or his dog!) – is a constant reminder of how silly the rest of us can be, although he observes that sometimes he doesn’t get presented with the bill!

    Two media releases from the Assistant Minister for Disability Services, on aspects of carer support

    Have your say on a new integrated carer support service system
    Jane Prentice MP, Assistant Minister for Social Services and Disability Services, 6 November 2016
    The Coalition Government is calling for submissions on the draft Service Delivery Model for services to support and sustain the work of unpaid carers ... Assistant Minister for Social Services and Disability Services, Jane Prentice said the draft Service Delivery Model sets out a new integrated carer support system and outlines the types of services and how they are proposed to be delivered in the future ...

    As part of the 2015-16 Budget, the Coalition Government announced the development of an Integrated Plan for Carer Support Services (the Plan) ... The second phase of the Plan involves developing a new integrated carer support service system through a co-design process.

    Mrs Prentice said continued public consultation is important in ensuring the community has their say on the best way to deliver carer services and support ...

    Feedback on the draft Service Delivery Model can be provided by participation in an online survey, or through making a written submission. The survey and submission process will be open from 6 November 2016 at 9am and will close on 15 December at 5pm.
    Jane Prentice MP, Assistant Minister for Social Services and Disability Services, 7 November 2016
    The Coalition Government today announced the establishment of the National Disability and Carers Advisory Council.

    The new Council brings together leaders from business and the disability and carer sectors, to provide advice on proposed policies and legislation affecting people with disability, carers and the sector that serves them.

    Assistant Minister for Social Services and Disability Services, Jane Prentice said the Council will provide advice on issues of strategic importance at a time of major reform in the disability and carer sectors.

    “The Council will play an important role in helping to drive the implementation of the overarching National Disability Strategy 2010-20,” she said.

    “It will also look at reforms in disability employment and carer support, and the full roll-out of the National Disability Insurance Scheme, including the interfaces with mainstream services.”

    “Members represent every state and territory as well as business and the disability and carer sector, and advocates.

    “I will co-chair the Council with Ms Keran Howe, who is well respected as a strong advocate in the sector and who has lived experience,” she said.

    The Council will meet formally at least twice a year and establish working groups and community consultations as needed.
    • The National Disability and Carers Advisory Council members are listed here.

    Thursday, 10 November 2016

    New online training course from Down Syndrome Education International: birth, early intervention and preschool years

    Down Syndrome Education International (DSE) has launched a second online course, focused on development from birth and early intervention through the preschool years. The course looks at many aspects of early development, including play, cognition, speech, language, number and motor skills.

    Presented and led by Professor Sue Buckley, the course includes 10 modules, each of which includes a video presentation, handouts and an assessment. The video presentations can be viewed, handouts downloaded and assessments completed at any time. In addition, course participants are invited to join an online discussion forum with DSE tutors for the opportunity to ask questions and seek additional advice.

    The course offers convenient and cost-effective access to up-to-date information and practical guidance for early years professionals supporting children with Down syndrome aged from birth to 5 years, including health visitors, early years teachers and assistants, speech and language therapists, advisory teachers, educational psychologists and outreach/advice staff and volunteers at organisations supporting young people with Down syndrome. The course will also be valuable for the parents of children with Down syndrome seeking detailed advice, based on the latest research.
    • Find out more here
    The first DSE online training course was announced in July 2016:

    You can contribute virtually to this UN presentation on International Day for People with Disability


    To make your voice heard, please submit your picture with the message on what would you like to thank the Convention on the Rights of Persons with Disability (CRPD) for through the online form on 1billionvoices.org or email at info@1billionvoices.org

    Wednesday, 9 November 2016

    Down Syndrome Australia media release on World Down Syndrome Congress 2022

    8 November 2016

    We are pleased to announce that after a competitive bidding process, Down Syndrome Australia has been selected by Down Syndrome International to host the 2022 World Down Syndrome Congress in Brisbane.

    This international conference brings together people with Down syndrome, family members, researchers and service providers to showcase the latest research and best practice as well as the lived experience of Down syndrome from around the world. The Congress will continue to support the ongoing agenda of Down Syndrome International to improve quality of life for people with Down syndrome worldwide and promote their inherent right to be accepted and included as valued and equal members of their communities ...
    • To read the full media release, click here
    • WDSC 2018 will take place in Scotland
    • WDSC 2020 will take place in Dubai

    News and commentary on the NDIS (58)

    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.
    _______________________________________________

    NDIS Champions: emerging grassroots leaders
    Disability Loop, October 2016
    Would your business, organisation or community group benefit from a free information session on the National Disability Insurance Scheme (NDIS), delivered by a person with disability in your local area?

    Do you want to know more about the National Disability Insurance Scheme (NDIS)? Do you want to understand what it will mean for people with disability?

    The Australian Federation of Disability Organisations (AFDO) has recently employed and trained 30 people with disabilities from all over Australia to become NDIS Champions - to deliver reliable, fact-checked information about the NDIS in their local communities ...


    NSW: How Siobahn Daley became the public face of the NDIS
    Rachel Brown, The Sydney Morning Herald, 7 November 2016
    Siobahn Daley knows first-hand how the National Disability Insurance Scheme can change lives but new research shows she's much better informed than most.

    Creating Capacity: Support for Adult Siblings Project
    Siblings Australia, October 2016
    Siblings usually have the longest relationship of any with a person living with disability. Support for siblings is important for their own wellbeing and for the benefits that a strong sibling relationship has for the person with disability. Siblings Australia has been funded by the DSS Sector Development Fund to develop more supports for adult siblings of people with disability. The aim of the project is to build the capacity of siblings to understand the role of the NDIS and support their brother or sister’s transition to the NDIS ...

    CripCroakey NDIS Part 1: Scandals, blunders and how change will only come when disability rights are front and centre
    El Gibbs, Croakey, 4 November 2016
    ... disability is not something that happens to some other people, but something that is part of normal, ordinary life. It is often said in disability circles that people are just temporarily able bodied – the idea that a ‘normal’ body is not a disabled body is a fantasy.

    "The NDIS was not to be a system that works for those disabled people “over there” – it is intended to become part of our essential social infrastructure, available to all Australians, which will ensure that having a disability will no longer mean poverty or a denial of basic human rights" ...

    "It's like a five-year-old wrote it": disability advocates slam NDIS care plansMiki Perkins, The Age, 29 October 2016
    Disability advocates – who all emphasised their strong support for the NDIS – said the agency managing the scheme was under enormous pressure to sign up participants in an unrealistic timeframe, and with inadequate federal funding ...

    Greater Expectations and the NDIS
    Sally Coddington Disability Services Consulting, 17 October 2016
    When I read that the idea of people with disability being supported to live an ordinary life is central to the work of the NDIS I feel an overwhelming sense of sadness at the mediocrity of it. I see it as a perpetuation of the “soft bigotry of low expectations”. I read recently “low expectations are one of the most subtle yet devastatingly effective forms of sabotage we can do to others and ourselves. Low expectations often masquerade as kindness yet they are the cruelest cuts because they deny an individual their opportunity for greatness.” Did we fight all these years for individualized funding and self-direction so that people with a disability could aspire to an ordinary life? Or did we hope that NDIS might provide the safety net of ordinariness so that people could aspire to greatness?

    Yes we want to hire workers more easily. But let’s also talk safeguards and support
    Ellen Fraser-Barbour, InCharge, 26 October 2016
    ... I have been wondering, however, about how these new types of self management models safeguard. Yes they, alongside all service providers, have policies in place to ensure safety, security and support for individuals, families and workers and these policies are vitally important but I can think of many examples where traditional large agencies are up to the hilt in policy but do necessarily invest in developing an active organisational culture or practice that truly embraces a human rights approach at base level. Policies are there, but putting this into practice seems to be easier said, than done. This has been highlighted in recent inquiries into abuse in disability services ...

    NDIA Annual Report 2015 - 16
    The NDIA Annual Reports outline what the agency has accomplished during the year. The reports show how we managed our resources to improve the lives of people living with disability.

    The NDIA 2015-16 Annual Report was tabled on 28 October 2016. You can download an accessible version here. An online (HTML) version, Plain English and Easy English versions will be available soon.