Adolescents with Down syndrome: research report on aerobic exercise and indicators of oxidative stress

The latest issue of the British Journal of Sports Medicine Online has a Short Report on a Spanish research study demonstrating that a 12 week aerobic exercise program reduced plasma levels of allantoin, a measure of oxidative stress, which "has been proposed as a pathogenic mechanism of several pathologies" in people with Down syndrome.

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.

Journal reference:
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

Disability Confidence: a new website for employers and business launched

The Disability Confidence website was launched this week, by Federal Parliamentary Secretary for Disabilities, Bill Shorten. The new site was developed by the Australian Employers Network on Disability, to provide businesses with information about the importance and potential of people with disabilities to every aspect of their business, with particular emphasis on employment, and as customers.

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."

Library Thursdays: "Up Close"

We're introducing a little order into this blog, by offering a post every Thursday featuring an item (or maybe a few) from the DS NSW library - one of our most valuable resources to support and inform families.

First up is a new acquisition, a very attractive book of written and photographic reflections of the relationship between a mother and her daughter who has Down syndrome. It's not actually about the Down syndrome - it's about the relationship:

Up Close - a mother's view, by Fiona Yaron-Field, Bunker Hill Publishing, 2008

It is available for loan to DS NSW members from our library

London Metropolitan University article.

More of Fiona Field's work:

Shifting Perspectives Exhibition, London

Fiona Yaron -Field's story about Ophir on Learning About Intellectual Disability

Edit 4/12/2008: an extract is available here on the Guardian UK website.

Up! Club Camp 2008: Mowbray Park Farmstay

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.

History of immigration discrimination - old thinking, old laws

Jan Gothard and Charlie Fox are parents, historians and members of Down Syndrome Western Australia. Charlie Fox has written extensively about the history of people with intellectual disabiity in Australia. Jan Gothard has taken up the cause of people attempting to imimgrate to Australia, who have a family member with a disability, over a number of years.

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.

- - - - - - - - - - - - - - - - - - - - - - - -

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."

MUSEC Briefings - concise evaluations of interventions

MUSEC is the Macquarie University Special Education Centre. MUSEC Briefings is series of concise (single page) briefing papers, each evaluating the evidence basis of particular intervention strategies claimed to assist students with disabilities to learn. Each briefing is arranged under the headings:

• 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?
• Conclusions
• The MUSEC Verdict

Click here for the list of published papers and references, and to link to them individually.

Here are a couple of blog musings that we enjoyed catching up with this weekend

On comparing ..... (Jennfier Groneberg, Pinwheels)

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.

Professor of Intellectual Disabilty Mental Health appointed to University of NSW

Dr Julian Trollor will take up the first Chair of Intellectual Disability Mental Health at the University of NSW in February 2009 as Associate Professor.

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.

Robbie Rist: skydiver

A report from South Bend, Indiana includes video of 25 year old Robbie Rist, who has Down syndrome, making his first skydive, from 13,000 feet. Click here for the print and video stories.

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".

Win for UK family in immigration application

Canberra Times report, Friday 14th November:

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.

4th International Down Syndrome Swimming Championships

The 4th International Down Syndrome Swimming Championships will be held in Albufeira, Portugal, from 27 November - 4 December 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)

Herograms can be sent to this address before 20th November, 2008:
teamaustraliaherogram@yahoo.com.au


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.

Disability in Australia: intellectual disability (AIHW report)

The Australian Institute of Health and Welfare has released a new report today: Disability in Australia: intellectual disability

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.

Available from CanPrint for $10.00 (1300 889 873). AIHW catalogue number (AUS 110).

"Stronger Together" Program is not affected by the NSW mini-budget

The NSW Minister for Disability Services, Paul Lynch, wrote yesterday to organisations interested in people with disabilities living in NSW:

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.

Down syndrome residency case 'just tip of an iceberg'

The Department of Immigration's response to applications from people with Down syndrome continues to draw media attention almost two weeks after it caught the Australian and international public interest by reporting the Moeller case.

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.

Families Weekend 2008 - Dubbo

Families' Weekend is an annual DS NSW event, alternating between metropolitan and rural venues, This year's Families' Weekend was held in Dubbo 17th - 19th October, coinciding with Down Syndrome Awareness Week. The weather was very kind, the company excellent, and was judged a great success.

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.

The kids enjoyed an activities program on Saturday while their parents had the option to attend a number of workshops with DS NSW staff and guest speakers. The program was supported and supervised by volunteers from the local area - we thank them for their involvement.

Older teens and adults with Down syndrome enjoyed their own program of activities and entertainment.

Phil Davidson entertained with fabulous music, and a Families' Weekend adaptation of Spicks and Specks.

On Sunday morning the visit to Western Plains Zoo was a great hit, with the kids and the grown-ups.

We hear that many plans for future get-togethers between the families were made.

Congratulations and thanks to everyone involved in making it such a success!

Organisation and planning for Families' Weekend, and the program costs are funded by NSW Health, under the NSW Carers Program, and by Down Syndrome NSW.

All familes are not the same ....

It is a cliche that all families are not the same, even if their basic structures look similar. Some are different because of the very deliberate choices they have made.

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."

Australian UN committee member speaks out about immigration case

The rejection of the Moeller family's application for permanent resident status continues to make news both in Australia and around the world, with the response of a noted Australian legal expert speaking from his newly announced position at the United Nations.

Professor Ron McCallum AO, has been elected as one of 12 experts to the first monitoring committee for the Convention on the Rights of Persons with Disabilities at the United Nations headquarters in New York.

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.

The Australian reported on 5th November:

.....refusing German doctor Bernhard Moeller's application for permanent residence in Australia on the basis of the cost to the taxpayers of his son Lukas's Down syndrome is "outrageous" and not in the spirit of international disability agreements, law expert Ron McCallum says.

Click here for the full text of The Australian's report.

Click here for the Human Rights Commission's response to Prof McCallum's appointment.

Prof McCallum was profiled by the ABC TV program Compass in 2007. Click here to read the transcript. He is a 2008 Ambassador for the Don't DIS my ABILITY campaign.

Accessible Arts - the news about people with disabilities and the arts in NSW

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!

Oxford research on language and reading in children with Down syndrome

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.

For the love of Lukas ....

Anne Gleeson is a freelance writer and poet from Ballarat. She writes a very personal response in today's Melbourne Age, to the rejection of their application for permanent residence, by Lukas Moeller's family, by the Department of Immigration.

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 ?