Wednesday, 4 June 2014
Forums for young people with intellectual disability: Choosing Employment
The National Council on Intellectual Disability (NCID), and NSW Council on Intellectual Disability, invites youth with intellectual disability, their families and teachers to a forum on choosing a pathway to open employment.
You can choose to attend a day, evening or weekend forum:
You can choose to attend a day, evening or weekend forum:
Tuesday, 17th June 6.30pm - 9.00pm - Castle HillThere is no cost to attend. Light refreshments will be provided. RSVP is required.
Wednesday, 18th June 10.00am - 12.30pm - Liverpool
Thursday, 19th June 10.00am - 12.30pm - Brookvale
Thursday, 19th June 6.30pm - 9.00pm - Hornsby
Friday, 20th June 10.00am - 12.30pm - Blacktown
Saturday, 21st June 2.00pm - 4.30pm - Kogarah
Tuesday, 3 June 2014
Free online: Journal of Mental Health for Children and Adolescents with Intellectual and Developmental Disability - An Educational Resource
Changes:
Information on upcoming conferences and training workshops will now be posted and updated on this page of the School Link website.
Subscribers will receive a monthly reminder to check out what’s new on the website with the link to access the latest issue of the journal.
An archive of past articles is being set up on the website to make it easier for readers to search for specific topics, titles, authors or themes.
The first issue in the new format is now freely available online, here, or you can subscribe by email
Features
- Diagnosis, Psychotropic Medication and Outcome in an audit of 150 Child and Adolescent Patients by David Dossetor
- Trajectory: Changing the Direction – A view across a range of papers by Terry Sarten
- Simon: A Very Special Olympian by Jodie Caruana
- PBS: The Aspect Practice by Tom Tutton
- Communication Passports in the UK & New Zealand by Terry Sarten
Regular articles
- The Medicine Cabinet: Adverse Reactions by Judy Longworth
- A Day in the Life ... of a Music Therapist by Miriam Crombie & Roxanne McLeod
- The Interview - Paul Hutchins
Reviews
- Conference Review: The Good Childhood Conference, Melbourne by Sarah Chaplin
- Paper review: Managing Madness: Mental Health and Complexity in Public Policy. Evidence Based by Terry Sarten
- Book Review: Social Work Practice and Intellectual Disability by Terry Sarten
- Conference Report: The Second Annual ACI Intellectual Disability Health Network Forum by David Dossetor
Monday, 2 June 2014
Education and the NDIS
Children with Disability Australia has opened a Facebook forum, Education and the NDIS, 'seeking feedback about the experience and understanding young people and families have about what assistance is provided through the NDIS in relation to education at school, often referred to as the education/NDIS 'interface'.' An email address is provided for anyone wishing to provide feedback off-line.
- Supports the NDIS will Fund in Relation to Education - this fact sheet provides information on what supports the NDIS will fund in relation to education and how to determine whether a support is funded by the NDIS or the school education system. Published on the official government NDIS website.
News and commentary on the NDIS (21)
Hosted jointly by Macquarie University, the University of Sydney and Australian National University
5 - 7.30 pm, Wednesday 4 June
5 - 7.30 pm, Wednesday 4 June
NDIS Webinar #6 - participants and carers from the 2013 NDIS trial sites to share their experiences accessing the Scheme.
Thursday 5th June 2014
Thursday 5th June 2014
In this issue:
- Message from the CEO
- A positive portrait
- Federal Budget update
- Mental health appointment
- Webinar: Meet the Governors
- Preparing Queenslanders for NDIS
- Trial site update (WA)
- National launch in Geelong
- What’s on
- NDIS News – Have your say
NSW Government introduces Disability Inclusion Bill
NDIS: Parents say disability scheme failing to deliver support promised
NSW Ageing, Disability and Home Care media release, 28 May 2014
Minister for Disability Services John Ajaka (has) introduced the landmark Disability Inclusion Bill 2014 into the Legislative Council, which will improve the lives of people with disability, their families and carers.
The main purpose of the Bill is to enhance protections and enshrine the rights of people with disability into NSW law during implementation and following full transition to the National Disability Insurance Scheme (NDIS) ... read more here
Minister for Disability Services John Ajaka (has) introduced the landmark Disability Inclusion Bill 2014 into the Legislative Council, which will improve the lives of people with disability, their families and carers.
The main purpose of the Bill is to enhance protections and enshrine the rights of people with disability into NSW law during implementation and following full transition to the National Disability Insurance Scheme (NDIS) ... read more here
Caroline Winter, The World Today (ABC Radio), 29th April 2014
Parents of disabled children say the National Disability Insurance Scheme (NDIS) is failing to deliver what was promised.
Friday, 30 May 2014
Weekend reading and viewing: 31st May - 1st June 2014
David Perry, How Did We Get Into This Mess? 27th May 2014
"It's so sad when people have special needs." A caring, sweet, 4th-grader said this to me at the bus stop a few minutes ago ... I said, "I don't think having special needs is sad. I think it can be sad when people with special needs don't get the help they need, and even worse when they don't have a good community of friends and family around them." ...For Hire: Dedicated Young Man with Down Syndrome
Michael Bérubé, Aljezeera America, 25th May 2014
... The first time I talked to Jamie about getting a job, he was only 13. But I thought it was a good idea to prepare him, gradually, for the world that would await him after he left school. My wife, Janet, and I had long been warned about that world: By professionals it was usually called "transitioning from high school." By parents it was usually called "falling off the cliff." ...
When He Grows Up
When He Grows Up
Mardra Sikora, Lessons More Special Than The Needs, 23rd May 2014
... “WHAT ARE YOU GOING TO DO WHEN HE GROWS UP?”
What to do next if your baby has Down syndrome
Sipping Lemonade, 23rd May 2014
... To the new mom holding her sweet child with Down syndrome in her arms, frightfully asking, “What should I do next?” — my answer would be: Enjoy ...
5 Anger Management Methods For Individuals With Special Needs
That’s the question posed to you for the last twenty years. And although you’ve given one answer or another, time after time, it still feels as if this moment has snuck up on you.
What to do next if your baby has Down syndrome
Sipping Lemonade, 23rd May 2014
... To the new mom holding her sweet child with Down syndrome in her arms, frightfully asking, “What should I do next?” — my answer would be: Enjoy ...
5 Anger Management Methods For Individuals With Special Needs
Karen Wang, Friendship Circle, 21st May 2014
... Prevention of anger-driven episodes is easier than active intervention. Although there is little research available on anger management for individuals with special needs, I found several applicable methods for both prevention and active anger management ...
Disability and a good life - what does it take?
Says Who? Panel, UNSW TV, 30th April 2014
The advent of a new national support system for Australians with disability raises broader questions about what a good life for people with a disability should be. How do we take account of disability in all its diversity in this new era? And what are some of the key challenges we face in forging this new, more inclusive Australia? Featuring an expert panel of leaders in disability advocacy, research, policy and practice ...
Disability and a good life - what does it take?
Says Who? Panel, UNSW TV, 30th April 2014
The advent of a new national support system for Australians with disability raises broader questions about what a good life for people with a disability should be. How do we take account of disability in all its diversity in this new era? And what are some of the key challenges we face in forging this new, more inclusive Australia? Featuring an expert panel of leaders in disability advocacy, research, policy and practice ...
News from NSW Ageing, Disability and Home Care
NSW Government introduces Disability Inclusion Bill
Media Release, John Ajaka, (NSW) Minister for Ageing and Minister for Disability Services, 28 May 2014
Minister for Disability Services John Ajaka today introduced the landmark Disability Inclusion Bill 2014 into the Legislative Council, which will improve the lives of people with disability, their families and carers.
The main purpose of the Bill is to enhance protections and enshrine the rights of people with disability into NSW law during implementation and following full transition to the National Disability Insurance Scheme (NDIS).
“The NSW Liberals & Nationals Government is transforming disability services in NSW and the Disability Inclusion Bill is a cornerstone of that,” Mr Ajaka said.
“People with disability are now shaping disability services, rather than being passive recipients of services from governments and other providers.
“The development of the Bill was shaped by feedback that was received during an extensive consultation process in the past few years which involved thousands of people across NSW.
“The feedback indicated a strong need for change and I thank those who took the time to share their opinions, thoughts, hopes, suggestions, stories and concerns.
“We have listened carefully to the legitimate concerns and expectations of individuals and organisations and, as a result, have delivered a Bill that is both responsive and supportive.
“The public told us they wanted the new disability law to promote human rights, give people with disability greater choice and control over their lives, clarify the role of the NSW government before and after the introduction of the NDIS, provide safeguards to protect the rights of people with disability and help make communities more inclusive.
“I am extremely proud of this Bill – it represents the NSW Government’s commitment to support and protect people with disability so they can live their lives free from abuse, neglect and exploitation.”
The Bill establishes a strong, outcomes-focused approach to whole of government strategies which aim to make communities more accessible and inclusive for people with disability.
When the Bill is enacted, the new legislation will replace the Disability Services Act 1993 which, for the last 21 years, has provided the main legal foundation in NSW for regulating supports, services and funding for people with disability.
Although progressive when introduced, the Disability Services Act, does not sit comfortably with the present day approach to disability which focuses on empowering people with disability to have greater choice and control so they can live more independently.
New University Chair for Intellectual Disability
NSW Carer Awards 2014 - nominations open
Minister for Disability Services John Ajaka today introduced the landmark Disability Inclusion Bill 2014 into the Legislative Council, which will improve the lives of people with disability, their families and carers.
The main purpose of the Bill is to enhance protections and enshrine the rights of people with disability into NSW law during implementation and following full transition to the National Disability Insurance Scheme (NDIS).
“The NSW Liberals & Nationals Government is transforming disability services in NSW and the Disability Inclusion Bill is a cornerstone of that,” Mr Ajaka said.
“People with disability are now shaping disability services, rather than being passive recipients of services from governments and other providers.
“The development of the Bill was shaped by feedback that was received during an extensive consultation process in the past few years which involved thousands of people across NSW.
“The feedback indicated a strong need for change and I thank those who took the time to share their opinions, thoughts, hopes, suggestions, stories and concerns.
“We have listened carefully to the legitimate concerns and expectations of individuals and organisations and, as a result, have delivered a Bill that is both responsive and supportive.
“The public told us they wanted the new disability law to promote human rights, give people with disability greater choice and control over their lives, clarify the role of the NSW government before and after the introduction of the NDIS, provide safeguards to protect the rights of people with disability and help make communities more inclusive.
“I am extremely proud of this Bill – it represents the NSW Government’s commitment to support and protect people with disability so they can live their lives free from abuse, neglect and exploitation.”
The Bill establishes a strong, outcomes-focused approach to whole of government strategies which aim to make communities more accessible and inclusive for people with disability.
When the Bill is enacted, the new legislation will replace the Disability Services Act 1993 which, for the last 21 years, has provided the main legal foundation in NSW for regulating supports, services and funding for people with disability.
Although progressive when introduced, the Disability Services Act, does not sit comfortably with the present day approach to disability which focuses on empowering people with disability to have greater choice and control so they can live more independently.
New University Chair for Intellectual Disability
Minister for Disability Services John Ajaka has announced Associate Professor Leanne Dowse as the newly appointed Chair in Intellectual Disability and Behaviour Support at the University of New South Wales (UNSW).
“The NSW Government established this new role as part of its commitment to improve services for people with intellectual disability,” Mr Ajaka said.
“Associate Professor Dowse brings a wealth of experience to the position, having worked as a practitioner and passionate advocate for intellectual disability since the 1980s.
“She is a leading member of UNSW’s Faculty of Arts and Social Sciences and has been a researcher since 1995 and an academic since 2008.
“Associate Professor Dowse has developed and promoted disability studies in Australia and has taught social policy, social research methods, disability studies, human behaviour and criminology ... read more here and here
“The NSW Government established this new role as part of its commitment to improve services for people with intellectual disability,” Mr Ajaka said.
“Associate Professor Dowse brings a wealth of experience to the position, having worked as a practitioner and passionate advocate for intellectual disability since the 1980s.
“She is a leading member of UNSW’s Faculty of Arts and Social Sciences and has been a researcher since 1995 and an academic since 2008.
“Associate Professor Dowse has developed and promoted disability studies in Australia and has taught social policy, social research methods, disability studies, human behaviour and criminology ... read more here and here
Nominations are now open for the 2014 NSW Carers Awards and encouraged the community to nominate someone they know.
NSW Carers Awards are an opportunity for the community to acknowledge and celebrate the outstanding contributions being made by unpaid carers.
Nominations can be made in the following categories:
The 2014 NSW Carer of the Year will be announced at a ceremony at Parliament House on Monday 13 October.
Nominations can be made online at www.facs.nsw.gov.au/carersawards until Monday 30 June 2014.
NSW Carers Awards are an opportunity for the community to acknowledge and celebrate the outstanding contributions being made by unpaid carers.
Nominations can be made in the following categories:
Carers Award – IndividualFor individuals who have made an exceptional contribution to caring.
Carers Award – OrganisationFor community groups, schools, workplaces or other organisations which provide exceptional support to carers.Up to 60 individual carers and 20 organisations will be honoured with an award during NSW Carers Week which runs from Sunday 12 - Saturday 18 October 2014.
The 2014 NSW Carer of the Year will be announced at a ceremony at Parliament House on Monday 13 October.
Nominations can be made online at www.facs.nsw.gov.au/carersawards until Monday 30 June 2014.
Thursday, 29 May 2014
Library Thursday: 29th May 2014
New in the libraryFar from the Tree: Parents, Children and the Search for Identity
Andrew Solomon
A copy of this book has been kindly donated to the library by one of our families.
Archiving Project
Our archiving project continues on a weekly basis in the office. We are currently looking for any copies of materials from the 7th World Down Syndrome Congress held in Sydney in 2000. Any of the following would be greatly appreciated to supplement our collection:
- Program and Abstract
- Workbook for delegates with Down syndrome
- List of delegates
Any other material from the Congress including photographs would be appreciated as well.
Members' library
The Down Syndrome NSW library catalogue is available to view here. - To contact Jo at the library, ph. 9841 4410, or email library@dsansw.org.au
Latest additions to 'events' pages
Down Syndrome NSW events:
City to Surf
10th August 2014
Sydney
Better Start, Early Days workshops
Turramurra Friday 6th June 2014
Wollongong Wednesday 11th June 2014
Campbelltown Tuesday 17th June 2014
Northmead Friday 27th June 2014
Step Up! 2014
City to Surf
10th August 2014
Sydney
Better Start, Early Days workshops
Turramurra Friday 6th June 2014
Wollongong Wednesday 11th June 2014
Campbelltown Tuesday 17th June 2014
Northmead Friday 27th June 2014
Step Up! 2014
19th October 2014
Sydney
Other events:
Hosted jointly by Macquarie University, the University of Sydney and Australian National University
5 - 7.30 pm, Wednesday 4 June 2014
Camperdown
Preparing for the National Disability Insurance Scheme (NDIS)
Other events:
5 - 7.30 pm, Wednesday 4 June 2014
Camperdown
Preparing for the National Disability Insurance Scheme (NDIS)
NDIS Webinar #6 - participants and carers from the 2013 NDIS trial sites to share their experiences accessing the Scheme.
Thursday 5th June 2014
Working with Loss and Grief
Thursday 5th June 2014
Centre for Disability Studies - one-day workshop presented by Dr. Vivienne Riches.
Monday 21 July 2014
Camperdown
Monday 21 July 2014
Camperdown
Wednesday, 28 May 2014
People with Down syndrome in the media
The actor with Down's syndrome tackling Dickens
Damon Rose, BBC News, Ouch, 23rd May 2014
An actor with Down's syndrome is to play the title role in BBC Radio 4's new classic serial, Barnaby Rudge. Although his non-standard speech might be an extra challenge for the listener, the producer feels it shouldn't happen any other way ...
Hanna Atkinson's 2014 Commencement Speech
Damon Rose, BBC News, Ouch, 23rd May 2014
An actor with Down's syndrome is to play the title role in BBC Radio 4's new classic serial, Barnaby Rudge. Although his non-standard speech might be an extra challenge for the listener, the producer feels it shouldn't happen any other way ...
Hanna Atkinson's 2014 Commencement Speech
Filmed at Heritage High School's 2014 graduation. These wise words were written by Hanna and were delivered on 5/21/14. The title of the speech is "Do not let others define who you are".
Down's Syndrome man Ashley Marshall's flock of eye-catching birds
Darryl Ames, The Craven Herald, 16th May 2014
A young man with Down’s Syndrome who tends to a small flock of eye-catching birds is building a sense of community spirit on a Skipton estate. Ashley Marshall, 23, a former pupil at Brooklands Special School, is raising rhea, peacocks, turkeys, geese, ducks and other poultry in hen pens on the Middletown allotments ...
Pablo Pineda, Spanish actor with Down Syndrome: ‘We are not sick’
“She had her confidence knocked,” said Alison. “We think it is stress related and she is waiting for further medical appointments ...
A young man with Down’s Syndrome who tends to a small flock of eye-catching birds is building a sense of community spirit on a Skipton estate. Ashley Marshall, 23, a former pupil at Brooklands Special School, is raising rhea, peacocks, turkeys, geese, ducks and other poultry in hen pens on the Middletown allotments ...
Pablo Pineda, Spanish actor with Down Syndrome: ‘We are not sick’
Hope Gillette, Soludify, Jul 17, 2013
What do you think when you hear the words ‘Down Syndrome’? Do you think of a talented individual, with a graduate college degree, traveling around the world giving motivational speeches, and leading a life very similar to yours? If you don’t, maybe you should.
Northumberland girl helping to raise cash for charity who helped her after hair loss
What do you think when you hear the words ‘Down Syndrome’? Do you think of a talented individual, with a graduate college degree, traveling around the world giving motivational speeches, and leading a life very similar to yours? If you don’t, maybe you should.
Northumberland girl helping to raise cash for charity who helped her after hair loss
Lisa Hutchinson, Chronicle Live, 19th May 2014
... Abbie ... is overwhelmed by her new wig. She said: “I love it. I feel like a princess.” Abbie started losing her hair and was diagnosed with alopecia in April last year.“She had her confidence knocked,” said Alison. “We think it is stress related and she is waiting for further medical appointments ...
Tuesday, 27 May 2014
Carers NSW 2014 Carer Survey
The 2014 Carer Survey is now open until 30th June 2014.
- Click here to complete the survey.
This year’s survey builds on the strengths of our previous surveys, as we aim to more thoroughly investigate issues that impact carers on a daily basis. The 2014 survey particularly focuses on:
- Health and wellbeing
- Employment
- Service access and social support
- Characteristics of carers and those they care for.
Information from previous surveys is available from the Carers NSW website, here.
Save the date for Step Up! 2014
Sunday 19 October 2014
More details to follow.
If you are interested in organising an event in your local area or would like to volunteer at an event please contact Benjamin Chinnock via email: ben.chinnock@dsansw.org.auben.chinnock@dsansw.org.au
Monday, 26 May 2014
Recent commentary about the Disability Support Pension
Details of how the reassessment of the work capacity of people under 30 who began receiving the Disability Support Pension between 2008 and 2011 are not yet available, but there has been plenty of media commentary about who receives DSP and who 'deserves' to, and its impact on employment of people with disability, such as these examples:
Evidence does not back claims of a blow-out in numbers receiving disability support pension
Evidence does not back claims of a blow-out in numbers receiving disability support pension
Judith Ireland, Sydney Morning Herald, 23rd May 2014
... a leading disability advocate argues the problem with the disability pension is not an "explosion" in the number of people on the payment, but the low levels of employment of people with a disability. National Disability Services chief executive Ken Baker says the disability pension had only grown by 116 people between the end of 2011 and the end of 2013 ...
Tele's sloppy journalism hurts our most vulnerable
... a leading disability advocate argues the problem with the disability pension is not an "explosion" in the number of people on the payment, but the low levels of employment of people with a disability. National Disability Services chief executive Ken Baker says the disability pension had only grown by 116 people between the end of 2011 and the end of 2013 ...
Tele's sloppy journalism hurts our most vulnerable
 |
| Front page Daily Telegraph, 22nd May 2014 Click to enlarge the image |
Frank Quinlan, The Drum, 23rd May 2014
... Most bizarrely, the story compared our country's war veterans to recipients of the pension, suggesting a negative comparison between these proven heroes and the dross on the DSP.
Ironically, some of those so called DSP 'slackers' would be veterans themselves, perhaps with Post Traumatic Stress Disorder, for example.
In reality, the front page of the Daily Telegraph yesterday did a large number of Australians, who are battling every day with a serious mental illness or who care for somebody with a serious mental illness, a tremendous disservice ...
Complaints to press council in response to Daily Telegraphs depiction of disability pensioners as slackers
... Most bizarrely, the story compared our country's war veterans to recipients of the pension, suggesting a negative comparison between these proven heroes and the dross on the DSP.
Ironically, some of those so called DSP 'slackers' would be veterans themselves, perhaps with Post Traumatic Stress Disorder, for example.
In reality, the front page of the Daily Telegraph yesterday did a large number of Australians, who are battling every day with a serious mental illness or who care for somebody with a serious mental illness, a tremendous disservice ...
Complaints to press council in response to Daily Telegraphs depiction of disability pensioners as slackers
Nick Grimm, PM (ABC Radio), 22nd May 2014
... Rupert Murdoch's Sydney Daily Telegraph is being accused of scapegoating the disabled in a furore over its coverage of the budget aftermath ...
... Rupert Murdoch's Sydney Daily Telegraph is being accused of scapegoating the disabled in a furore over its coverage of the budget aftermath ...
Budget 2014: it's time to raise our expectations
Dr George Taleporos, Ramp Up, 19th May 2014
While last week's Budget announcement may have sparked conversation about the significant barriers to employment for people with disabilities, changes to the Disability Support Pension may actually help to change a culture of low expectation ...
NDIS events, June 2014
NDIS Forum - Investing in people with disability: Financing and costs of the NDIS
This forum is being held jointly by Macquarie University, the University of Sydney and Australian National University.
At this forum session, leading disability experts and actuaries will analyse the 2014 budget papers and scheme experience, and an expert panel will discuss the implications for service providers and for people with disability.
Confirmed speakers and panellists include:
A link to join the webinar will be made available shortly.You can test your connection ahead of time using this test link.
The sixth NDIS webinar brings together participants and carers from the 2013 NDIS trial sites to share their experiences accessing the Scheme. Participants will share their advice on how best to prepare for the NDIS and discuss and respond to questions from the online audience. This timely discussion will assist people preparing to enter the Scheme in new and expanding trial sites across Australia.
Access all NDIS webinars, including the most recent webinar ‘Meet the Governors of the National Disability Insurance Scheme’, on the NDIA website.
The NDIA invites people with disability, family members, carers, advocates, support providers and community members to join the discussion online and contribute to the conversation. The webinar comprises audio, visual, live captioning and Auslan to make it as widely accessible as possible.
Take part in the conversation by submitting questions and comments via Twitter using the hashtag #NDISWEBINAR or via the Livechat facility. You can register your attendance at engagement@ndis.gov.au or phone 1800 800 110. Visit the NDIS website for more information.
This forum is being held jointly by Macquarie University, the University of Sydney and Australian National University.
At this forum session, leading disability experts and actuaries will analyse the 2014 budget papers and scheme experience, and an expert panel will discuss the implications for service providers and for people with disability.
Confirmed speakers and panellists include:
Cain Beckett – Price Waterhouse Coopers and Chair of the Disability Council of NSW
Peter Martin – Australian Government Actuary and NDIS Reviewing Actuary
Gordon Duff - Executive Officer, National Policy Research Unit, National Disability Services
Professor Richard Madden – University of Sydney
Professor Jim Butler – Australian National University
Associate Professor Leonie Tickle – Macquarie University
5 - 7.30pm, Wednesday 4 June
CamperdownFree, but you must register prior
Online registration via Macquarie University website here
For further information, please e-mail Linda Drake: linda.drake@mq.edu.au or telephone 02 9850 8678.
For further information, please e-mail Linda Drake: linda.drake@mq.edu.au or telephone 02 9850 8678.
NDIS webinar #6: Preparing for the NDIS
Thursday 5 June 2014
A link to join the webinar will be made available shortly.You can test your connection ahead of time using this test link.
The sixth NDIS webinar brings together participants and carers from the 2013 NDIS trial sites to share their experiences accessing the Scheme. Participants will share their advice on how best to prepare for the NDIS and discuss and respond to questions from the online audience. This timely discussion will assist people preparing to enter the Scheme in new and expanding trial sites across Australia.
Access all NDIS webinars, including the most recent webinar ‘Meet the Governors of the National Disability Insurance Scheme’, on the NDIA website.
The NDIA invites people with disability, family members, carers, advocates, support providers and community members to join the discussion online and contribute to the conversation. The webinar comprises audio, visual, live captioning and Auslan to make it as widely accessible as possible.
Take part in the conversation by submitting questions and comments via Twitter using the hashtag #NDISWEBINAR or via the Livechat facility. You can register your attendance at engagement@ndis.gov.au or phone 1800 800 110. Visit the NDIS website for more information.
Friday, 23 May 2014
Weekend reading and viewing: 24th - 25th May 2014
Each heading is a link:
Call the Midwife (series 3, episode 6, 59 m)
ABC iView, broadcast 22nd May 2014
In case you missed it, or want to see it again, this is the episode featuring Sarah Gordy (who has Down syndrome) and Colin Young (who has cerebral palsy) as a young couple having a baby in the 1950s in the East End of London. It is now on iView until 5th June.
Down syndrome: Why I don't want my child to hug everyone
Maureen Wallace, She Knows (Parenting), 22nd May 2014
... A boy of about 8 years old, with Down syndrome, was racing from tent to tent, barging in and wreaking havoc. Each time he was admonished, he ran to the closest person and hugged them. The cute gesture seemed to negate his poor behavior, and he was allowed to continue. Now that my own son is 4 and is getting positive reinforcement for hugging everyone, I've realized my son, who was "never going to do that," is on the path to becoming a random hugger, too ...
What Independence Means
Big Blueberry Eyes, 21st May 2014
... I've been thinking about independent living - what that might look like for Kayla, but more importantly what Kayla wants that to look like for her life ...
What Independence Means
Big Blueberry Eyes, 21st May 2014
... I've been thinking about independent living - what that might look like for Kayla, but more importantly what Kayla wants that to look like for her life ...
7 Awesome Life Lessons My Son With Down Syndrome Taught Me
John M Simmons, Huffington Post (Parents), 21st May 2014
... My son didn't progress quickly, but he did progress. If I tried to measure him against his siblings and the rate that they learned, there could only be disappointment. But when we celebrated Jack's accomplishments for what they were to him, and measured them against his own challenges, advancement for him was at least as impressive as it was for any of our other children ...
Our story: nothing has changed about Down syndrome, except how the world treats those with it
Mark Leach, Down Syndrome Pre-natal Testing, 19th may 2014
This past Saturday, our family got to experience something that would have been unimaginable when I was born. It shows nothing has changed about Down syndrome, except the way the world treats those with Down syndrome ...
In Science of Down Syndrome, Another Piece of the Puzzle
Vicki Vila, Thoroughly Modern Messy, 20th May 2014
A few news articles recently reported that after studying a pair of identical twins where only one had Down syndrome, scientists in Europe determined some new information about how having Trisomy 21, a third copy of the 21st chromosome, affects a person’s genetic material. Myself and some other parents who have children with Down syndrome were unsure what this research meant and were confused by some of the wording in these articles. To decipher this for my non-scientific brain, I contacted Dr. Michael Harpold, who has more than 35 years experience as a biomedical researcher and is the chief scientific officer for LuMind Foundation ...
Conversation - Andrew Solomon
John M Simmons, Huffington Post (Parents), 21st May 2014
... My son didn't progress quickly, but he did progress. If I tried to measure him against his siblings and the rate that they learned, there could only be disappointment. But when we celebrated Jack's accomplishments for what they were to him, and measured them against his own challenges, advancement for him was at least as impressive as it was for any of our other children ...
Our story: nothing has changed about Down syndrome, except how the world treats those with it
Mark Leach, Down Syndrome Pre-natal Testing, 19th may 2014
This past Saturday, our family got to experience something that would have been unimaginable when I was born. It shows nothing has changed about Down syndrome, except the way the world treats those with Down syndrome ...
In Science of Down Syndrome, Another Piece of the Puzzle
Vicki Vila, Thoroughly Modern Messy, 20th May 2014
A few news articles recently reported that after studying a pair of identical twins where only one had Down syndrome, scientists in Europe determined some new information about how having Trisomy 21, a third copy of the 21st chromosome, affects a person’s genetic material. Myself and some other parents who have children with Down syndrome were unsure what this research meant and were confused by some of the wording in these articles. To decipher this for my non-scientific brain, I contacted Dr. Michael Harpold, who has more than 35 years experience as a biomedical researcher and is the chief scientific officer for LuMind Foundation ...
Conversation - Andrew Solomon
Richard Fidler, Conversations (ABC Radio), Tuesday 20 May 2014
Andrew Solomon spent a decade speaking with 300 parents raising children who are exceptional, unusual or difficult. Working on what would become his award-winning book, Far From the Tree, Andrew talked to families of children who are different from their parents: children born deaf, or autistic, or transgender, and parents of child prodigies, and criminals.
He's come to the conclusion that all of us have 'vertical identities' and 'horizontal identities'.
Vertical identities are the bits we get from our parents: our religion, race and nationality.
Horizontal identities are the characteristics that are ours alone and are often the hardest parts for parents to accept ...
Audio file (51m 47s)
- Andrew Solomon's TED Talk from 2013, Love, No Matter What
Susan Aileen, SwiftTalk (The Classroom), 20th May 2014
... The practice of mainstreaming indirectly promises a child that someday, if she performs well in the special education classroom, she will become a member of a general education class. Mainstreaming teaches children that belonging is conditional. In other words, if you “act right” when you visit the general education classroom, you can belong. If you don’t “act right,” you will have to leave, and if you are lucky you will be given a chance to try again to belong on another day ...
... The practice of mainstreaming indirectly promises a child that someday, if she performs well in the special education classroom, she will become a member of a general education class. Mainstreaming teaches children that belonging is conditional. In other words, if you “act right” when you visit the general education classroom, you can belong. If you don’t “act right,” you will have to leave, and if you are lucky you will be given a chance to try again to belong on another day ...
What about their brothers and sisters?
All families are concerned about sibling relationships. 'Our' new families often want to know how one child having Down syndrome will impact on his brothers and sisters. Sometimes - quite often, actually - it's like this:
Graduating WSU senior pursues links between Down syndrome, Alzheimer's
Marcia Ratliff, Winona Daily News, 9th May 2014
... Noterman’s research concerns connections in the brain, specifically relating Down syndrome with Alzheimer’s. Fifty percent of people with Down syndrome get Alzheimer’s, so Noterman wanted to find out more about how brains with those diseases function differently. She has additional interest in Down syndrome, because her 16-year-old brother, Willie, has the condition ...
My brother, Jon
... Noterman’s research concerns connections in the brain, specifically relating Down syndrome with Alzheimer’s. Fifty percent of people with Down syndrome get Alzheimer’s, so Noterman wanted to find out more about how brains with those diseases function differently. She has additional interest in Down syndrome, because her 16-year-old brother, Willie, has the condition ...
My brother, Jon
David Will, The Daily Princetonian, 29th April 2014
My oldest brother, Jon, is 41 years old and has Down syndrome. I’ve never shied away from explaining his condition to strangers. In fact, I am proud of all he’s accomplished in spite of his condition. But when a friend uses “retard” or any variant of the word, I usually just let it roll off my back, even though it stings every time. In doing so, I’ve been a coward ...
Disability is a funny word
Tommy Harris, Apostrophe, 23rd April 2014
... From the outside looking in, some might think that because of Tim, our lives are not “normal.” I couldn’t begin to say how wrong they would be ...
My oldest brother, Jon, is 41 years old and has Down syndrome. I’ve never shied away from explaining his condition to strangers. In fact, I am proud of all he’s accomplished in spite of his condition. But when a friend uses “retard” or any variant of the word, I usually just let it roll off my back, even though it stings every time. In doing so, I’ve been a coward ...
Disability is a funny word
Tommy Harris, Apostrophe, 23rd April 2014
... From the outside looking in, some might think that because of Tim, our lives are not “normal.” I couldn’t begin to say how wrong they would be ...
Thursday, 22 May 2014
'The Guide': new free online publication on mental health services for people with intellectual disability
Accessible Mental Health Services for People with an Intellectual Disability: A Guide for Providers (otherwise known as The Guide) has been developed by UNSW researchers and will provide a national framework for action for all frontline mental health service professionals. It was launched at the Royal Australian and New Zealand College of Psychiatrists 2014 Congress in Perth.
"Approximately 400,000 Australians live with an intellectual disability and they are two to three times more likely than the general population to experience mental health problems, like depression and schizophrenia," says UNSW Chair of Intellectual Disability Mental Health Associate Professor Julian Trollor, who is one of the Guide's authors.
"Despite this, many Australian mental health professionals report that they feel ill-equipped and lack confidence in assessing, supporting and managing people with an intellectual disability," says Associate Professor Trollor, who also heads the Department of Developmental Disability Neuropsychiatry (3DN) at UNSW Medicine.
"The current services are not meeting the needs of patients. This new Guide, which is a practical resource underpinned by human rights principles, will go some way to tackle this by supporting mental health practitioners to provide the highest quality of care and timely access to services for people with an intellectual disability."
The Guide, which is the first document of its type in Australia, has been developed by 3DN at UNSW Medicine with funding from the Australian Government Department of Health. It is informed by extensive background work, including evidence-based practice and clinical consultation.
"This Guide is a product of comprehensive consultation, research and collaboration, and is a valuable contribution to our understanding of the service needs of people with intellectual disability and mental illness. Supporting frontline mental health providers to improve service accessibility and delivery will achieve better health and wellbeing outcomes for this important client group," says Jane Halton, Secretary of the Australian Government Department of Health.
The pioneering resource encourages a co-ordinated approach across various service sectors and is available at the 3DN website.
Source: University of New South Wales, via Medical Express
Wednesday, 21 May 2014
Outdoors
How lucky are we to live in a country with a climate that allows us to spend lots of time outdoors, just about year round?
NSW Sport and Recreation survey
Are you …
- A person with disability who doesn’t participate in sport and physical activity?
- A person with disability who does participate in sport and physical activity?
- A support person or an advocate of a person with disability?
All respondents who live in NSW and complete the survey by Friday 30th May at midnight will have the opportunity to win 1 of 3 tablets of their choice to the value of up to $600.
This questionnaire is accessible to all and for information on alternative formats, please contact the consultation team at all_in_the_game@acceptingengagement.com
This questionnaire is accessible to all and for information on alternative formats, please contact the consultation team at all_in_the_game@acceptingengagement.com
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