Library Thursdays: Signing resources

Signing helps people with Down syndome communicate. It can be used initially to help children learn how to communicate with others which leads to speech. And it can also enhance speech throughout a person's life. There are many resources in our library to help with the use of signing. Recent additions are:
Sign with Me - Learning Strategies for Key Word Sign, a short DVD produced by Makaton WA which explains why we do key word signing and how to do it. It is good for schools and services to understand how to use signing.
and

Let's play with sign, a book by Makaton Australia. It shows how to use scripting with Makaton. It only shows about 120 signs, but it helps people understand how to sign and which words to sign.

Other resources in the library for signing:

The Makaton Vocabulary - Auslan edition and Key Signs- a supplement to the Makaton Vocabulary.

Sing and Sign with Me by Aileen Ryan

Makaton Nursery Rhymes DVD - Variety Tasmania

Tiny Hands: Australian Sign Language for Babies to Toddlers by Aileen Ryan

Small Talk Reference Chart by Aileen Ryan

See and Sign picture books: Emotions/Feelings, Animals, Objects, Opposites, Food, Directions

To borrow any of these resources, email the library.

Or to see video of each Auslan sign demonstrated, go to Auslan Australia - online Auslan sign reference.

Research Directions Symposium: papers published online

Down Syndrome Education International hosted the inaugural Research Directions Symposium in the UK in October 2007. Reviews and updates on their current work were presented by leading researchers from a number of fields, and discussed over four days by their international colleagues. The first of the resulting papers are now published in the journal Down Syndrome: Research and Practice, in its advance online edition. The current print issue is Volume 12: Issue 2.

Since 2007, DownsEd has adopted a policy of making all of its publications freely available online, and for purchase in print formats. The comprehensive Down Syndrome: Issues and Information packages are in the process of being provided online by the Open Access project.

NSW Ombudsman's report: Down syndrome and dementia

The NSW Ombudsman has responsibility for reviewing the deaths of people with disabilities in care, and has just published the fifth annual report about reviewable deaths, concerning those occurring during 2007.

Report of Reviewable Deaths 2007: Volume 1 Deaths of people with disabilities in care was tabled in the NSW Parliament on 3rd December 2008, and can be freely downloaded from this link. The Ombudsman's introduction emphasises the ongoing monitoring role of the Ombudsman's Office, beginning:

My office is one of very few agencies in the world with the function of reviewing the deaths of people with disabilities in care.

Our work in reviewing individual deaths is important: it highlights gaps in service practice, policy and systems, and drives service improvement from a grassroots level.

It is through considering the deaths of people with disabilities in care more broadly, identifying trends, risk factors and systems issues, that we aim to minimise preventable deaths in this vulnerable community. Our annual report provides the means for us to consider the deaths of people with disabilities in care in the context of the larger service system, and to effect change across government and non-government agencies, and across disability, health, and other sectors.

The main way in which we seek to bring about change through our annual reports is by making recommendations to government and service providers, and monitoring the implementation of those recommendations until we are confident that progress has been made.

This volume includes a separate chapter on Down syndrome and dementia, prompted by the prevalence of dementia in people with Down syndrome whose deaths are reviewed:

....... this year we took a closer look at these individuals and current research in this area. Of the 63 people with Down syndrome who lived in care who died between 2003 and 2007, 29 were diagnosed with dementia. Of the 34 people who did not show signs that they had dementia while they were alive, five were noted at post-mortem to have changes in the brain consistent with Alzheimer’s disease.

The report includes a literature review on Down syndrome and dementia commissioned from the Centre for Developmental Disability Studies (University of Sydney), and a file review the people with Down syndrome and dementia who died in 2003 - 2007. The oldest person with Down syndrome whose file was reviewed was 79 (and had dementia), and another person of 70 is reported not to have had dementia. Comprehensive file reviews are illustrated by case studies.

12 recommendations arose from the review. Responses from the Department of Ageing, Disability and Home Care and NSW Health to each are documented, with further comments from the ombudsman.

Does Australia need a national prenatal screening policy for Down syndrome?

The Fairfax press picked up reports about the Danish research referred to in this post, and asked Australian (professional) experts if a national prenatal screening strategy for Down syndrome should be implemented in Australia. Disparities in the availablility of screening between metropolitan and rural communities, and between public and private patients were highlighted.

Down Syndrome NSW provided input, but not much of our contribution was used, particularly not our emphasis on the need for prospective parents to have access to adequate accurate and current information upon which to base an informed choice.

Similar articles were published by both the Sun-Herald in Sydney and The Age in Melbourne.

The Australian articles have prompted quite a bit of comment (and some re-reporting) on the Internet, including this response from a British blogger, "The Great Unasked Question in Down Syndrome Screening".

A debate about implementation of screening strategies might well be overtaken by the clinical release of non-invasive diagnostic prenatal tests using maternal blood samples in the first trimester. The development of tests using DNA sequencing technology to detect fetal DNA fragments from maternal blood are claimed by researchers to be well advanced. An apparently polite dispute over patents between two groups in the US was reported in the science press last week.

Slimming and swimming: healthy news from the UK and Portugal

While this is a great story from the UK about a woman with Down syndrome having the determination and persistence to lose a lot of weight, with the support of her sister, the photos are a particular delight. She looks very pleased with herself, as well she might!

And on another health and fitness note, the 4th International Down Syndrome Swimming Championships are just coming to completion in Portugal after five days of elite competition, and three years of preparation. Check the Down Syndrome Down Under Swimming Organisation's website for Team Australia's fabulous results, and the International Down Syndrome Swimming Organisation's site for all the results. Well done all round!

Library Thursdays: Easy Cook Book

Easy Cook Book: you simply look and cook Vols 1- 4 Department of Food Science, RMIT. Melbourne, Vic ; Villamanta Publishing, 1986-1998.

It's that holiday time of year when many of us want (or feel the need) to be cooking and baking special dishes. Independent Living Skills Resources has developed a series of cookbooks (available in our library) that are visual and simple to follow so that people with Down syndrome, or anyone that absorbs information better visually, can make wonderful meals and specialities. There are other cookbooks with pictures that are easy to follow but they are mainly aimed at children. This set of cookbooks would appeal to all ages and includes microwave recipes, vegetarian dishes, soups, salads and desserts. There are 4 volumes and each volume is spiral bound and has wipe-clean pages. The measuring cups and spoons shown are colour coded for easier use. Our recommendation for this holiday season is the microwave Plum Pudding from Easy Cook Book 3. Go to http://www.easycookbook.org/cookbooks.htm to see which recipes are in each volume (click on the volume number on the left). To borrow any of these cookbooks, email us at the library.

Joan Medlen (author of the Down Syndrome Nutrition Handbook--available from the library)provides a service to create visual recipes from standard ones so if there is a family favourite that you'd like to makeover, have a look at Joan's site. You can download a sample of a recipe and the visual makeover. Her visual cookbook, Cooking by Color is soon to be released.

How many boys dream of being firemen ....

Travis is 12 and wants to be a fireman. What boy doesn't? Travis has Down syndrome, and lives in a small rural town in NSW. His Mum actively seeks opportunities for him to meet other kids with disabilities (often at some distance), and to be involved in everything the small local community has to offer.

Local kids join the local fire brigade as cadets, and undergo training. They are not allowed to fight actual fires until they are at least 16.

Travis recently became a cadet, and was hesitant to join in at first. But now he (and the others) have their uniforms, and his enthusiasm has sky-rocketed. He will wear his orange overalls for six months, and then the coveted two-piece fire suit.

A few weeks ago he managed a two day training course, along with the other cadets.

He will learn the skills of firefighting at his own pace, and be supported along the way.

Will he ever fight a bushfire? No-one knows - but we do know that he has a place in his community, and the fire brigade is helping him to find it.

In the meantime, it is difficult to tell who is the most proud - Travis, with his new-found swagger, or his Mum.

Today is International Day of People with Disabilities 2008

Lots of events are planned to celebrate International Day of People with Disabilities.


Click here for the official NSW DON'T DIS my ABILITY website, and here for the national website, both of which include stories and lists of events (not all events are scheduled to be held today).

The ABC commissioned Jan Gothard, a WA disability activist with a particular interest in immigration to write recent cases, for publication today. Click here for Jan's article and the following debate from readers.

Special Olympics: new funding to provide sporting opportunities for more people

Special Olympics is an important part of the lives of many people with Down syndrome, who participate in a wide range of activities across NSW, enjoying sports, making friends, learning and developing new skills. Some go on to compete at State, National and International level. All are supported by volunteers.

A one-off additional funding grant of $4000,000 to Special Olympics NSW has been announced by the NSW Minister for Disability Services, coinciding with International Day for People with Disabilities, which occurs tomorrow.

Olympics Australia CEO Catriona Barry welcomed the funding.

“We know there are literally tens of thousands of people with an intellectual disability who could be participating in sports.”

“With this funding we now have the resources to be able to get out into the community, find them, and get them out there participating and enjoying the benefits of an active lifestyle.”

“We will be able to have more people working in the community, linking people with an intellectual disability to sporting opportunities.”

“There are so many people with an intellectual disability that are keen to have a life outside of their home or workplace, and we intend to create a community for them where they can be part of a supportive environment, get active, and have fun.”

“With a growing number of participants we will need more volunteers.”

“So as well as allowing us to better reach out to the approximately 68,000 people in NSW with an intellectual disability, this funding will also allow us to reach out to more volunteers,” she said.

The Special Olympics NSW provides individual and team sports, winter and summer sports, sports for younger people and also programs for older people who want to stay active.

As well as recreational sports, the organisation offers regular local competitions and annual State competitions at which athletes were selected to represent NSW at national competitions.

Gabrielle Clark: Special Olympics Dr John Day Award 2008

Gabrielle Clark has been announced as one of two winners of the prestigious Dr John Day Award, for 2008, by Special Olympics Australia. The other winner is Kelly Wren.

Gabrielle is quoted as saying: 'Special Olympics has helped me achieve so much in my life - I just want to give something back so that other athletes can see what can be done if you have support'.

The full citation for both awards is here.

Gabrielle and her family have been members and supporters of Down Syndrome NSW over many years, and have been active in several roles. We add our congratulations to the many others she has received on this occasion.

National Disability Insurance Scheme campaign website

Campaigners for the development of a universally available National Disability Insurance Scheme have established a website to provide updates about the campaign, and the submission of its paper to current consultations on the National Disability Strategy (see this post).

"Ranking alongside Medicare and compulsory superannuation, the scheme would be a visionary economic and social reform for the benefit of all Australians. "

The campaign is endorsed by a wide range of organisations, listed on the site. You can sign up for updates as the campaign progresses.

Self-Managed Community Participation Projects

Interest is growing locally in ways in which people with disabilities can be supported while making real choices about their own lives - we should have more to report later in the week.

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.

Danish population study: numbers of babies born with Down syndrome reduced by 50% with implementation of national screening

In the same week that reporting of a small increase in the numbers of babies born with Down syndrome in the UK is being debated (click here for some examples of the arguments; and here for a deeper analysis by Frank Buckley; and here for Tom Shakespeare's succint view), a new study from Denmark found a very different phenomenon.

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

• Many countries are currently trying to achieve national screening strategies for Down’s syndrome

• 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

The full text of the report is available at BMJ Online, by clicking on the link below:
Impact of a new national screening policy for Down’s syndrome in Denmark: population based cohort study: BMJ 2008;337:a2547

New research on a prenatal intervention

A US study of a potential prenatal treatment of a mouse model for Down syndrome, aimed at promoting neuronal development, is being widely reported, following publication of the report of its findings in the current issue of the scientific journal Obstetrics and Gynaecology.


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

Minister for Immigration's statements, and more media reports

The Minister for Immigration, Senator Chris Evans, has issued three statements in relation to the Moeller family's approval for permanent residency granted yesterday, and to the proposed review of the immigration criteria:

• 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."

• Down Syndrome Victoria issued this media release yesterday.

Edit 28/11/2008:

• Response from the Human Rights Commissioner

Library Thursdays: "Count Us In"

Count Us In by Jason Kingsley and Mitchell Levitz,Harcourt Books, 2007.

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

Moeller family granted permanent residency - criteria to be reviewed

The family of Dr Bernhard Moeller (whose son, Lukas has Down syndrome) has been granted permanent resident status in Australia. The decision was announced today (26th November) in the Senate.

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

iPODS in special education classrooms, and beyond

At our recent seminar for disability services professionals in Queanbeyan, a speech pathologist who was in the audience told us about this excellent You Tube link to a well-produced 8 minute video about using iPODS creatively in a special education classrooms.

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 ......

Number of newborns with Down syndrome increased in UK

It is estimated that two babies are born each day in the UK. In response to statistics showing a rise in the number of babies born with Down syndrome in the UK since 2000, following an initial decrease after the introduction of prenatal screening in 1989, the London based Down's Syndrome Association has asked 1000 families about their reasons for choosing to continue with pregnancies.

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.

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 ?

International Day of People with Disability: 2008 ambassadors announced

Twenty one extraordinary individuals were chosen from the arts, sports and business fields to support the 2008 Don't DIS my ABILITY campaign. They will be attending various events across NSW and spread the word that people with a disability can do anything.

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

Click here to read about all of them, see their photos (there's a very stylish new one of Ruth), and for links to details of this year's events.

International Day of People with Disability is celebrated each year on 3rd December

Choosing Naia: 10 years on

Amidst the interest generated by the nomination of Sarah Palin as the Republican Vice-Presidential candidate in the current US presidential election campaign, Tierney Temple Fairchild reflects in the Washington Post, about her own experience 10 years ago. She and her husband knew before her birth, that their daughter Naia had Down syndrome, and a congenital heart lesion.

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 library@dsansw.org.au

All of the items held in the Library Collection are listed by subject category, here.

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

A statement has been prepared by clinicians and scientists involved in the care of people with Down syndrome, including input from members of the US based Down Syndrome Medical Interest Group and the advisory boards of several Down syndrome organisations, about the use of Prozac, Focalin, Ginkgo, in a protocol of "treatment" for Down syndrome.

Announcement: http://blogs.downsed.org/downsed/2008/10/statement-on-th.html

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.

Continuing media attention on Australian Immigration case

The Australian Department of Immigration's refusal of permanent residency to the family of Dr Bernhard Moeller, including his 13 year old son Lukas who has Down syndrome, continues to draw media attention in Australia and abroad.

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)