Sunday, 30 November 2008
On Friday, the Self-Managed Community Participation Project, was celebrated at a function in Sydney highlighting several individual experiences of people supported by Ability Options, and funded by the Department of Ageing, Disability and Home Care.
The Minister for Disability Services introduced the program and its aims to the audience, and a number of case studies were presented by family members, one of them the family of a young man with Down syndrome.
Two of the family presentations are included in the Minister's media release about the Self-Managed Community Participation Project
Opening the World to Ross is a Bega District News report from October 2008, about a young mna accessing a similar project in rural NSW.
Saturday, 29 November 2008
Danish population study: numbers of babies born with Down syndrome reduced by 50% with implementation of national screening
A research study of all pregnancies and births in Denmark over the period of implementation of national screening recommendation is reported in the British Medical Journal published online on 27th November 2008. The number of live births of babies with Down syndrome was halved during 2005 - 2006, compared to 2000 - 2004.
From the published report:
What is already known on this topic
- None has described how a combined screening strategy in the first trimester affects numbers of infants born with Down’s syndrome or rate of invasive procedures
- Detection rates and false positive rates for the combined first trimester risk assessment have been reported only from specialised centres or from regional experience
What this study adds
- After implementation of a national screening policy in Denmark, the number of infants born with Down’s syndrome and the rate of invasive procedures was noticeably reduced
- The screening strategy achieved high detection rates and low false positive rates
Impact of a new national screening policy for Down’s syndrome in Denmark: population based cohort study: BMJ 2008;337:a2547
Friday, 28 November 2008
Frank Buckley, CEO of Down Syndrome Educational International has published an excellent summary in his blog, Frank Talk. He provides links to background information that helps in understanding both the research project and the information it is built on, and to reports in the mainstream media.
Reference to the original research report (available free online):
Laura Toso, Irene Cameroni, Robin Roberson, Daniel Abebe, Stephanie Bissell and Catherine Y. Spong, Prevention of Developmental Delays in a Down Syndrome Mouse Model, Obstetrics & Gynecology, 2008;112:1242-1251
Thursday, 27 November 2008
- Statement by Senator Evans on Dr Bernhard Moeller
- States urged to support regulations for health waiver
- Parliamentary Committee to investigate migration and disability
- This ABC news page links to a video report from ABC TV News, including interviews with the family, and the announcement in the Senate by the Minister.
And this page records an interview this morning with Federal Parliamentary Secretary for Disability Services Bill Shorten, who said:
" ...... the current migration laws do not recognise the positive contribution disabled people can bring to the community.
"Just because you are a person with a disability, does not mean you are a cost," he said.
"We need to understand that you are a contributor.
"And we've got to move beyond just looking at the person with a disability, beyond looking at their impairment and move to understanding there's a whole person with marvellous abilities in many cases.
"There are concerns that the health requirement only considers the estimated cost to the public health system - along with state-related costs such as special education needs and community service - and it doesn't recognise that a person, a young person with a disability ..... can contribute to the community."
The groundbreaking, stereotype-changing book, Count us In was originally written in the early 90s by two young men, Jason Kingsley (age 19) and Mitchell Levitz (21), who have Down syndrome. It is their view of life, relationships and other things that were important to them. It is an interesting book, giving not only an insight into two young people with Down syndrome but also an understanding of the early years of inclusion and the times not that long ago when parents were told to leave their baby in an institution and “tell your family and friends that he died in childbirth”.
This book has been re-issued with an afterword by the two men, now in their thirties, and their mothers, telling what has happened in their lives in the subsequent years. It is a great look into the possibilities and realities of life for adults with Down syndrome. At the time that Kingsley and Levitz wrote the book, they did so with the mission to be inspirational role-models for others with Down syndrome, to show people what they could achieve and to show others that they are just like everyone else. They have certainly succeeded and the book remains relevant and inspiring.
Interview with Kingsley and Levitz for The Jewish Week
To borrow the book from the library, Click here
Wednesday, 26 November 2008
The family's appeal was rejected yesterday, and the Minister intervened today.
The Minister, Senator Chris Evans, has announced that the immigration treatment of people with disabilities would be referred to the Joint Standing Committee on Migration.
- ABC News report
- ABC News Samantha Donovan's interview with Dr Moeller for PM
- The Age (Melbourne) report
Of course, these ideas could be used in regular classrooms too. For older children, adolescents and adults, an iPOD could well be a cool enough device to encourage them to use visual supports that they might otherwise find too different from how others communicate. We'd be very interested in hearing about other innovative uses of iPODS by people with disabilities.
It's got us thinking about iPODS ......
Tuesday, 25 November 2008
The results, released in a Radio 4 documentary, "Born with Down's Syndrome", show that many believe the quality of life for people with Down's syndrome will be better than in the past and that those with Down's syndrome are more accepted in society. Click here for the full text of the DSA's press release issued on 24/11/2008.
Commentary by Times journalist Simon Barnes, father of Eddie, 7.
The programme "Born with Down's Syndrome" was broadcast on BBC Radio 4 on Monday November 24th 2008 at 8pm. It is presented by Felicity Finch. Click here for online audio.
Click here for the figures from the National Down's Syndrome Cytogenetic Register on the number of births can be found in their 2006 report.
Sunday, 23 November 2008
Adolescents with Down syndrome: research report on aerobic exercise and indicators of oxidative stress
The researchers' conclusion:
A 12-week aerobic program reduced significantly oxidative damage expressed in terms of plasmatic allantoin content in adolescents with Down syndrome. Further studies on this topic are required.
The abstract of the report is available online (click here), and the full text is available for purchase.
A 12-week aerobic training program reduced plasmatic allantoin in adolescents with Down syndrome, Rosety-Rodriguez et al. Br J Sports Med 2008 0 (2008), p. bjsm.2008.052530v1
Saturday, 22 November 2008
Its print publication Opportunity can be downloaded from the website, or ordered in hard copy. The Parliamentary Secretary's media release says:
"Opportunity includes tips on becoming confident about meeting the needs of employees and customers with disability, as well as important statistics, case studies and a checklist of actions businesses can take to make their products and services more accessible.
.....For Australian businesses, people with disability should be seen as a significant market and source of labour, not to mention a large group with spending power which can no longer be ignored."
Thursday, 20 November 2008
Wednesday, 19 November 2008
This year's weekend camp was held at a new venue, Mowbray Park Farmstay at Picton. There was more to do than there was time for, and everyone had a great time.
The bush dance on Saturday night was a hit.
It was voted the best camp ever! Thanks Brooke, and the wonderful team of volunteer supporters.
Tuesday, 18 November 2008
They have combined their skills, experience and analysis in a lucid account of the evolution of immigration policy and practice, resulting in the dissonance between the law and current Australian values, published in The Australian (17th November). They conclude:
Families with a child with a disability, such as those supported by (Prof Fiona) Stanley and other health experts, should not be put in the position of having to fight their way through the Migration Review Tribunal before being accorded the right to bring their skills and qualifications into Australia. The family of Tracey Robinson, who finally received ministerial approval for migration last week, had waited more than six years for a resolution and over that period had to endure an appeal to the tribunal as well as to the Federal Court. Immigration Minister Evans should be called on urgently to exercise his discretion and offer closure to the many other families in waiting. But above all, the DDA should be changed and its clause 52, like the White Australia policy before it, should be consigned to the dustbin of history. It's time to throw aside legislation cast in century-old attitudes, and for the Rudd Government to do for disability what the Whitlam government did for race.
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It was also reported yesterday that the Department of Immigration has requested that 13 year Lukas Moeller be subject to another medical review, despite two previous assessments, and no actual health problems. The (Melbourne) Herald-Sun reported that his father, Dr Bernhard Moeller " ..... angrily refused the request last week, despite fearing it could affect the outcome of his visa review."
"Lukas has Down syndrome. That's not going to change," Dr Moeller said. "It makes me angry. We've done the medicals twice. It's just more bureaucracy."
Monday, 17 November 2008
- Statement of the Problem
- Proposed Solution/Intervention
- The theoretical rationale – how does it work?
- What does the research say? What is the evidence for its efficacy?
- The MUSEC Verdict
Click here for the list of published papers and references, and to link to them individually.
Sunday, 16 November 2008
Half the Story .... (Dave Hingsburger, Chewing the Fat)
These two blogs are amongst our favourites, and are linked to our Blogroll (see the right hand column), to help keep them handy.
The NSW Department of Ageing, Disability and Home Care has funded the position for five years. The Minister for Disability Services, Paul Lynch said the key objectives of the Chair of Intellectual Disability Mental Health were to:
- facilitate and support the development and delivery of courses in mental health and intellectual disability;
- lead the development of a research program in relation to people with an intellectual disability and mental health issues; and
- work with NSW Health to deliver psychiatric services to people with an intellectual disability and to assist in building the community of practitioners with expertise in the diagnosis and treatment of people with an intellectual disability and mental health issues.
Dr Trollor will be responsible for undergraduate and postgraduate teaching in mental health and intellectual disability to medical students, trainee psychiatrists, psychologists and other medical and allied health professionals.
The Chair, along with nine Advanced Psychiatric Fellowships in Disability Mental Health through the NSW Institute of Psychiatry are two NSW Government initiatives aimed at increasing the workforce capacity in relation to intellectual disability and mental health.
One of Robbie's early childhood teachers has left a comment on the web page, that he was " a strong willed, exciting individual even then".
Saturday, 15 November 2008
The Federal government has overturned a decision to deny permanent residency to a British midwife and her family because her child has Down syndrome, ending a six-year legal battle.
Click here for the rest of the report.
Thursday, 13 November 2008
The Down Syndrome Down Under Swimming Organisation will field a team of 20, including 5 NSW members :
- Lucy Dumitrescu
- Brendan Foley
- Greg Blanch
- Will Brunsdon
- Daniel Rumsey (Team Captain)
Down Syndrome NSW congratulates the Down Syndrome Down Under Swimming Organisation, and each of the members of Team Australia - we wish you well at the Championships in Portugal!
Australian of the Year opposes refusal of visas
It is discriminatory and shameful to refuse families with Down syndrome children permanent residence on the basis of the cost to the taxpayer, child health expert Fiona Stanley says.
Click here for Debbie Guest's report and interview with the 2003 Australian of the Year in The Australian, Thursday 13th November.
Wednesday, 12 November 2008
People with an intellectual disability represent a very significant client group of disability services in Australia, reflecting the priority given to this group and the origins of many disability services in Australia. This bulletin presents an overview of prevalence of intellectual disability and its related impairments, health conditions and activity limitations. The analyses focus on outcomes of participation in major life areas in children and young adults with intellectual disability as well as people ageing with intellectual disability.
Click on the link to view the media release and report.
As you may be aware, the NSW Government today delivered a mini-Budget in response to the State’s changing economic circumstances.
I am pleased to tell you that the Government’s $1.3 billion Stronger Together program has not been affected by the mini-Budget.
The Rees Government is aware of its responsibility to deliver on its commitments to provide better support and services for the most vulnerable people in our communities and these will continue over the first five years of the Stronger Together program.
For the latest Media Releases from the Department of Ageing, Disability and Home care, including the announcement on 10/11/2008 of more than $3.61 million to provide a leisure program for people with a disability across NSW, click here.
Tuesday, 11 November 2008
Print, radio and television journalists are still interested in just often such circumstances arise. Two further cases current in western Australia have been reported.
Click here to read The Australian's latest report.
Sunday, 9 November 2008
The families were all from the Central West and Western Districts of NSW, so had much in common, as well as much to learn from each other.
Older teens and adults with Down syndrome enjoyed their own program of activities and entertainment.
Saturday, 8 November 2008
Each year a small number of babies with Down syndrome is relinquished for adoption here in NSW, for a variety of reasons, while the great majority are raised in their birth families, with their siblings, as they would in most Western countries. At Down Syndrome NSW we work with both fostering and adopting families, providing support and information as we do for birth families.
Here are some perspectives on adoption and other family arrangements from families in the US and UK:
A new feature of the recently redesigned website of the Down Syndrome Association of Greater Cincinnati is a short online video, in which real families talking about what it was like for them to adopt or release a child with Down syndrome. It is a resource of their Adoption Awareness Program. Click here to view online (6.45 mins run time)
(The adoption process is different in the US from here in Australia, where there is greater involvement of government agencies. In NSW, the Department of Community Services manages adoptions, often in conjunction with non-government agencies, and a specialist team works on adoption of children with special needs.)
From UK newspaper, The Sun, a story about a remarkable woman who has adopted a large family of children with special needs, most of whom have Down syndrome. Click here to read the article about Alex Bell and her family. A Mother Like Alex, by Bernard Clark, was published by HarperTrue in the UK on 3rd November.
The Up Close column of the Fort Wayne (Indiana) Journal Gazette featured Donald Rothstein and his somewhat unusual family living arrangements, in yesterday's edition. Click here for the column and accompanying photographs. The Up Close column " ...... takes Journal Gazette readers ..... up close and personal with some of the unique and special individuals who make Fort Wayne and Northeast Indiana a better place to live."
Friday, 7 November 2008
Professor McCallum, the former Dean of the Faculty of Law at the University of Sydney and an expert in industrial law, won his place from a large field of candidates from other countries. Professor McCallum’s lived experience of disability further qualified him for the role. He is the only Australian currently serving on a UN treaty body.
Thursday, 6 November 2008
Accessible Arts monthly newsletter, published online, is always a great source of information about arts events in NSW. The November edition includes several images of a number of people with Down syndrome participating in visual and performing arts events, with obvious enjoyment.
Artist Digby Webster heads the list, pictured at the opening of AART.BOXX08 at the Tin Sheds Gallery: www.aarts.net.au/news/201/73/Newsletter-November-2008/ You can click through to images of each artist's work, including Digby's.Choreographer, dancer and teacher Dean Watson has been working with young people with Down syndrome for a number of years in his highly regarded Flamenco@ classes, developed specifically for them. He has won a 2008 Don't DismyAbility Grant for an event at the Seymour Centre: www.aarts.net.au/news/203/51/2008-Don-t-DIS-my-ABILITY-grants-announced/
Mark Shepherd took his Special Access Kit music program to the Tuesday Night Club at Blacktown: www.aarts.net.au/westernsydney/2008/09/10/the-special-access-kit-with-mark-shepherd/
There's a familiar face on the Bakehouse poster too!
Wednesday, 5 November 2008
Researchers at the University of Oxford continue to investigate the development and processes of language and reading in children with Down syndrome, as part of the Oxford Study of Children's Communication Impairments. Dr Margriet Groen is a Postdoctoral Researcher in the Department of Experimental Psychology, who has a particular interest in children with Down syndrome. Results of her previous research can be accessed here (click through to Dr Margriet Groen, under the "People" link).
A new research study aims to find out which side of the brain people with Down syndrome use when they speak. Most people use the left side of the brain for language, but earlier results indicate that this might be different in people with Down syndrome. A different pattern of brain organisation might be one of the reasons many people with Down syndrome find it difficult to learn to talk.
Until now, only indirect measures (such as which hand children write with) have been used. The new project will use a new technique called functional transcranial doppler ultrasonography. Children as young as 4 years of age can participate with the technique, although initially the researchers are recruiting adolescents with Down syndrome aged 12-15 years.
Tuesday, 4 November 2008
For the love of Lukas, let's lift this new pall of shame
When family members respond to such events and attitudes, with passion and commitment, born of actual experience it is easy for others to say and think "well they would say/think that, wouldn't they?" And isn't that exactly the point ?
Monday, 3 November 2008
They are an interesting and diverse bunch, and include two people who have intellectual disabilities:
- Michael Bartels, the Deputy Chairperson of the NSW Council for Intellectual Disability, and a cricket enthusiast
- and our very own Ruth Cromer, actor, advocate, office worker
International Day of People with Disability is celebrated each year on 3rd December
Sunday, 2 November 2008
This is the annotation from our library listing, on the book about Naia's birth, written by journalist Mitchell Zuckoff:
Choosing Naia: A family's journey, Zuckoff, Mitchell. Boston: Beacon Press, 2002
A powerful story based on an award-winning series of newspaper articles first published in the Boston Globe, about a young couple whose first child is diagnosed with a significant heart anomaly and with Down syndrome. The book traces their emotional and intellectual journey through making a decision to continue the pregnancy, and the first months of baby Naia's life.
DS NSW members can borrow the book from our library by contacting firstname.lastname@example.org
All of the items held in the Library Collection are listed by subject category, here.
Saturday, 1 November 2008
English translation: http://dx.doi.org/10.3104/statements.2106
Spanish translation: http://dx.doi.org/10.3104/statements.2108
French, German, Czech and Slovak translations are currently in preparation.
The statement includes a list of individual scientists and clinicians, and organisations that endorse it. Down Syndrome NSW has endorsed the statement.
The statement is freely reproducible as long as it is not altered.
The Australian reports that the Minister for Health, Nicola Roxon, has weighed into the debate, and will take it up with the Minister for Immigration, Chris Evans.
Some examples of today's Australian media reports:
- A town's plea: think again on our doctor (The Age, Melbourne)
- Chorus of demands to let doctor Bernhard Moeller stay (The Australian)
Some examples of international reports:
- Doctor barred from Australia because of Down syndrome son (The Telegraph, London)
- Australia snubs doc and Down Syndrome son (The Local, Hamburg)
- Australia: No residency for boy with Down syndrome (Associated Press)