Why Buddy Walk works .....

Buddy Walks were first held in the US around 1995, and have spread around the world. They began as an awareness activity - getting people with Down syndrome out in their own communities, with families and friends, making a gentle statement about living life like everyone else. It gives others an opportunity to stand up and be counted as advocates, just by their presence. And that is a good enough reason to hold one.

But wait, there's more. We have fun, we have a picnic, we get together with old friends, we meet new people, and sometimes we even raise some funds.

It can be whatever you want it to be on the day. Come for an hour or for the day.... bring lunch or try the sausage sizzle - or both! ..... bring the whole tribe, or come on your own, you'll soon meet up with others ..... join in all the games, or sit in the shade and catch the breeze ..... it's an easy, fun, relaxed day.

And you never know what people will notice, or what each individual will gain from the experience. Here are some overheard responses and stories from Sunday's Buddy Walk-Australia in Sydney .....

From various UP! Clubbers:

..... let’s go mingle and dance .....

..... we' re happy just chilling .....

..... Brooke, I did it, I finished the walk .....

..... its free, the Coke zero!.....

I don’t think I’ve ever seen the UP! Clubbers so relaxed and content! There was a great sense of achievement at Milson Park, the guys were proud about their contribution and the ultimate message of the day and happy just ‘relaxing in the park, talking to mates, eating a sausage sizzle, and soaking up the sun with friends (from Brooke, Up! Club Coordinator)

Slurpee machine, what else can you ask for!??

From other families:

Emily (7) has been on each of the three Sydney Buddy Walks, and this year she walked all the way by herself! Her Mum was very proud - and that's really something to look forward to, in future years, for parents who yesterday were struggling to carry their children by various methods.

During the picnic, the mother of a 2 yr old approached another Mum who has written occasionally to the Newsletter, to let us know how Ethan (now 10 ) is progressing. Ethan's Mum was thrilled to hear that her letters had provided inspiration and hope for another child's well being, and for his family. We know that happens very often, but to have it acknowledged personally is a special moment.

We had a wonderful day yesterday at the Buddy Walk in Sydney. We were tired in the evening though!!

We really did have a great day and I thought all the volunteers did a wonderful job directing us over the bridge and through the streets etc. We met up with some friends plus met some new people which is always nice. Jack did pretty well (considering last year we had him in the pram!) although he did like it on Dad’s shoulders!!

Buddy Walk-Australia, Sydney 2008: another very good day

Thank you to everyone who joined us today (Sunday 19th October) for Buddy Walk-Australia 2008, in Sydney. We had glorious sunshine, a leisurely walk across the Harbour Bridge to a beautiful waterside park in Kirribilli, and a gentle sea breeze .... perfect!

We don't know the exact numbers yet, but certainly more than 500 people helped to celebrate the lives of people with Down syndrome.

Congratulations to Priscilla Leong (DS NSW Events and Marketing Coordinator), who put months of planning into the Walk and her wonderful teams of volunteers, and to Tara Grech (of 'everyone can dance') who co-ordinated the picnic site. It all seemed effortless to those of us there as participants - but we know it wasn't!
Our thanks to

• Buddy Walk Patron, Virginia Judge MP, Minister for Fair Trading & Citizenship, who cut the ribbon to start the Walk at Circular Quay West


• all of the walkers - friends and families. You made the day!


• those who provided the sausage sizzle, juice stand, coffee van, music (wasn't Tegan Rogers great?), dancing, and the fabulous amenities in this lovely location


• the army pf volunteers who marshalled and guided, set up, kept things running, painted faces, ran games, sold raffle tickets, then packed and cleaned up


• and of course, our very grateful thanks to everyone who bought raffle tickets, organised sponsorships, and made donations - your generosity is much appreciated


• thank you all for cleaning up after your own group - it kept the final clean-up manageable, and left the park looking ready for its next event.

If you have photos from the Sydney, Wollongong, Newcastle or Wagga Wagga Buddy Walks, that you are willing to share, please email them to info@dsansw.org.au or to priscilla@dsansw.org.au

Economic Security Package: one-off payments for Disability Support Pensioners and carers

The Federal Government's announcement of the Economic Security Package includes one- off payments of $1400 to single people receiving the Disability Support Pension and Carer Payment ($2,100 for couples), and $1,000 payments for those receiving Carer Allowance (for each person being cared for).

The payments are scheduled to be made from 8th December. The payments will provide welcome financial relief for people receiving Disability Support Pensions and carer benefits while the Government's Review of Pensions continues, with recommendations due to be released early in 2009.

You do not have to contact Centrelink, or register in any way - the payments will be made automatically, into the account you have nominated with Centrelink for regular payments.

Details have been posted here on the Centrelink website

The joint media release from the Prime Minister and Treasurer is here

The Minister for Human Services's media release is here.

Draft policies on accommodation and respite services: minister's response to criticism

The newly appointed NSW Minister for Disability Services, Paul Lynch (MP for Liverpool) inherited the task of responding to community and sector consultation on two draft policies issued by the Department of Ageing, Disability and Home Care (see this post from 27th August).

While the need to manage both supported accommodation and respite capacity effectively has been acknowledged, the language used in the drafts, the punitive nature and legality of some of the measures proposed, and the apparent lack of empathy for the very real needs of people with disabilities and their carers have been roundly criticized by a number of organisations that have published their responses and analyses.

Click here to read the Minister's initial reply to those who have submitted a response, which says in part:

"..... I am also taking notice of feedback received by the sector and wider community.

From my own meetings and conversations – and the response to the draft policy
– it is clear that some elements in the draft must be withdrawn or substantially
altered.

As a result, I have instructed the Department of Ageing, Disability and Home
Care to prepare new drafts of both policies as soon as possible."

Down Syndrome NSW response to the initial draft policies:

• Response on Allocation of Supported Accommodation
• Response on Maintaining Respite Capacity

Click here for the NCOSS response to the initial draft policies.

Click here for Family Advocacy's analysis of the initial draft policies.

Opening the Doors: a new book

It's Carers Week this week, as well as Down Syndrome Awareness Week. Holdsworth Community Centre and Services in Woollahra runs a number of services and activities for people with disabilities and their carers, and has just released an anthology of carers' stories arising from its creative writing workshops for carers.

Opening the Doors: the hidden life of carers ".....acknowledge(s) the journey they have taken as carers and to confront with enthusiasm the wide range of emotions every carer has to deal with."



You can download an order form from here, or call Holdsworth Community Centre on 02 9302 3600

It's Down Syndrome Awareness Week 2008 !

On behalf of everyone at Down Syndrome NSW I would like to wish you all a Happy Down Syndrome Awareness Week 2008!

Down Syndrome Awareness Week is an opportunity to celebrate our love for our children, grandchildren, sisters, brother, nieces, nephews, cousins, friends, schoolmates and workmates who have Down syndrome.

It's an opportunity to help all of society better understand, appreciate and value people with Down syndrome as individuals, with individual needs, talents and abilities. Its also an opportunity to raise funds for Down Syndrome NSW to provide more services and greater support for all people and families affected by Down syndrome.

Down Syndrome Awareness Week commenced with the Inaugural Newcastle Buddy Walk and the second annual Buddy Walk in the Gong. It was a wonderful day at both Walks. Full Reports will be posted soon on the links below.

Buddy Walk is the big focus of this year's Awareness Week. It is the first ever national Down syndrome event held in Australia - a non-competitive, family friendly heart-warming event that the whole community can take part in. Walks are taking place in Perth, Adelaide, Brisbane, and other communities around the nation. In NSW, we will have a record 4 Walks this year in Newcastle, Wollongong, Sydney and Wagga.

This year, we celebrate with the theme AAA - 'Access All Areas'. We want to improve Down Syndrome NSW's services to all areas of NSW. We also want to make sure no area of family and community life is off-limits just because someone has Down syndrome. We want to increase opportunities for children and adults with Down syndrome to access all areas in society - whether opportunities in education, in sport & recreation, in employment, in accommodation - opportunities to fully participate in 'all areas' and to lead rich, diverse lives.

If you are unable to take part in any of the official events in the program below, you can still join in the celebrations in a number of ways:

* Send us your reports or stories about what Down Syndrome Awreness Week means to you: events@dsansw.org.au

* Support a Buddy Walk Hero this year at http://heroes.buddywalk.org.au

* Make a donation in celebration of DS Awareness Week at https://payments.dsansw.org.au/donations or call 02 9683 1900

* Take part in our DS Awareness Week Raffle. Buy a book of 25 tickets for $50, or buy any number of individual tickets for $2 each. https://payments.dsansw.org.au/payments (please note number of tickets you are purchasing in 'comments' box. Online sales close at midnight on Sat, 18th October). Great prizes include: Conia 22" LCD television, 3 BridgeClimb double passes, 5 Citizen Watches, 3 CD gift packs from Warners Music, Sydney Theatre Company double pass, Studio photo shoot. For full updated prize list email raffle@buddywalk.org.au

A full program of events is below. However you mark this special week, I wish you all the very best and thank you for all the support you have given DS NSW and people with Down syndrome.

Kind regards

Steve Clarke
CEO - Down Syndrome NSW
Tel 02 9683 1900 Mob 0424 044 930
Email steve@dsansw.org.au

Down Syndrome Awareness Week 2008 Program
(12 October - 19 October)

Sunday, 12th October
Buddy Walk - Newcastle http://newcastle.buddywalk.org.au (support local Buddy Walk heroes - full reports posted soon)
Buddy Walk in the Gong http://gong.buddywalk.org.au (support local Buddy Walk heroes - full report posted soon)

Thursday 16th October
'The Christian Brothers' Special DS Awareness Week performance, starring Geoff Morrell Flyer.pdf

Fri 17th - Sun 19th October
Families Weekend 2008, in Dubbo

Sun 19th October
Buddy Walk - Wagga http://wagga.buddywalk.org.au
Buddy Walk - Sydney http://sydney.buddywalk.org.au

Buddy Walk - Australia 2008: off to a great start!

Buddy Walks in Newcastle (Lake Macquarie) and Wollongong were held yesterday (Sunday, both enjoying beautiful weather and glorious waterside locations.

About 150 walkers and picnickers made the most of the perfect spring day in Wollongong by the harbour and North Beach, and another 250 walked the shores of Lake Macquarie from Warners Bay to Speers Point. Both events were good fun, and a great way for families to get together.

Our very grateful thanks to the organisers, donors and all of the participants - the day is a relaxed, easy one, but it takes a lot of work for that to be so!

Here are a few photos early from Stuart Park in Wollongong....

New non-invasive prenatal diagnostic test developed at Stanford University

A number of research groups around the world are working on non-invasive methods of prenatal diagnosis of foetal aneuploidies - irregular chromosome counts. Some are closer to clinical implementation than others. Non-invasive diagnostic tests aim to eliminate the uncertainties of current screening procedures that do not give a definitive diagnosis. A new test is reported in the US this week.

Researchers at Stanford University (California), led by Prof Stephen Quake have announced a new prenatal diagnostic procedure that can detect extra chromosomes (such as the extra copy of chromosome 21 present in babies with Down syndrome), from a maternal blood sample. The test is much safer and less traumatic for both mothers and babies, and will be less costly.

The current study includes a small number of participants, and needs to be repeated in much larger numbers. The researchers expect this particular method to be available clinically within 2 - 3 years.

News of the study is reported locally by News Limited here. A BBC TV news item 6th OCtober 2008) about the new tests, and implications for families can be viewed here.

The Stanford University media release is available here, and the full text of the research report is available to download from this week's edition of the Proceedings of the National Academy of Science (early edition, October 6, 2008), here.

Reference to the research report:
H. Christina Fan, Yair J. Blumenfeld, Usha Chitkara, Louanne Hudgins, and Stephen R. Quake, Noninvasive diagnosis of fetal aneuploidy by shotgun sequencing DNA from maternal blood, PNAS published October 6, 2008, doi:10.1073/pnas.0808319105

Earlier posts about prenatal tesing:

• Life enriched by care (7 June, 2008)
• New UK research into informed choice (11th July 2008)
• Some of the challenges of prenatal testing (22nd July 2008)
• New website offers information at diagnosis of Down syndrome (5 August, 2008)
• UK article highlights lives lost through prenatal testing (21 September, 2008)
• UK article highlights lives lost through prenatal testing (21 September, 2008)

Cooking By Color - Recipes For Independence

Joan Guthrie Medlen - author of The Down Syndrome Nutrition Handbook - has published a new book, Cooking By Color - Recipes For Independence. Joan is well known internationally for her work in nutrition and healthy eating for people with Down syndrome and other disabilities. Her books and journal articles are very popular, as are workshops with people with disabilities, their families and professionals who support them,

From Joan Medlen's website: www.downsyndromenutrition.com :

'A key component to living healthfully is having recipes that fit your lifestyle. The Cooking by Color recipe series uses photos and color-coding to make the job of cooking easier. The format for these recipes was originally designed for people with developmental disabilities preparing to live away from home in a post-secondary program. We found they are useful to anyone - with or without a disability - who is cooking for two or one or making an after-school snack!


In fact, the Cooking by Color recipe series is a good tool for empty-nesters and grandparents who have trouble reading the small numbers on measuring tools.These everyday recipes are developed with portion-control in mind and are quick, easy and healthy, too. Every recipe is designed to serve 1-2 people, which builds in portion control and reduces left overs. Every recipe includes suggestions for simple side dishes that will create a balanced menu and cooking tips to make cooking or clean up easier. The recipe directions are presented in a checklist format to be sure no important step is missed. These recipes are designed for success!


48 pages of color-coded recipes, photos, and tips for developing healthful, self- determined cooks. Recipes in Cooking by Color make two servings, which keeps everyone from eating too much of one thing. Recipes provide information to balance the meal , variations of the recipe, and how long it takes to make it.


Cooking by Color: Recipes for Independence is a great start for teaching healthful self-determination when preparing meals.'

While you are on the Down Syndrome Nutrition website, check out:

• My Tasting Journal
• My Food Record
• Coaching Tips

Eureka International presents

Geoff Morrell in

THE CHRISTIAN BROTHERS
by Ron Blair

Special Sneak Preview Charity Performance

Burrawang School of Arts Hall
7.00 pm, Thursday 16th October 2008

Bookings - put your name down at the Pub!
(Burrawang Village Hotel, ph. 4886 4206)

All proceeds to Down Syndrome NSW

Click here for a flyer

A busy time in the US ....

We know there's an election soon, and some tough economic decisions being made in the US at the moment, but it is a busy time for those interested in people with Down syndrome too, for other reasons.


The "Kennedy-Brownback" Bill (officially known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act) has recently been passed, after an earlier rejection. The Bill was introduced by Senators Edward Kennedy (Mass.) and Sam Brownback (Kan.) in 2005. From the National Down Syndrome Congress:


The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options .


Click here for the full press release from NDSC, and here for a detailed news report from the Wall Street Journal Digital Network.


October is Down Syndrome Awareness Month in the US, with many groups holding events, especially Buddy Walks, so there is a lot of media activity. Angie Picchi, a 28 year woman who has Down syndrome, and her mother Linda were interviewed by Colleen Mastony for the Chicago Tribune, about the awareness work they do with the medical profession click here for the report.

Global Institute dedicated to Down Syndrome

The Colorado media reported today about the launch of a significant new force in research into Down syndrome. 9News.com Colorado reports:

....... The Anna and John J. Sie foundation is committing $34 million to establish the new Linda Crnic Institute for Down Syndrome at the University of Colorado Denver's Anschutz Medical Campus. The institute will have the single research focus of eradicating the ill effects associated with Down Syndrome and will be the first to comprehensively address basic research, clinical research and clinical care all under one umbrella.

After years of due diligence and in the face of steady decreases in National Institutes of Health (NIH) funding for Down Syndrome, the Anna and John J. Sie Foundation decided that the best hope for real break-through and advocacy was a combined force made up of the University of Colorado Denver, the University of Colorado at Boulder, and The Children's Hospital in Aurora. Each organization has committed space, personnel and overhead to the Institute and it will be managed out of the Anschutz Medical Campus.

Anna and John J. Sie have high hopes for their granddaughter Sophia, born five years ago with Down Syndrome. Their family is determined to significantly enhance the lives of all people with Down Syndrome.....

Click here for the full report by Kim Christiansen from 9News.com Colorado

Recently the John and Anna Sie Foundation had announced the funding of a specialist clinical centre in Denver.

UK article highlights lives lost through prenatal testing

Down Syndrome Education International (based in Portsmouth, UK) has published an article examining the UK statistics for spontaneous abortion of unaffected babies linked to diagnostic testing for Down syndrome. The media has shown considerable interest, because the article looks at both the affected and unaffected pregnancies, whereas most studies focus only on the success of identifying those with Down syndrome (and some other conditions.

It raises numerous issues: about how well informed parents are in making decision about prenatal testing, about continuation or termination of pregnancies; about whether Down syndrome should be considered grounds for termination of pregnancy.

The full report is here: www.down-syndrome.org/editorials/2087/

The DownsEd news release and information is here: www.downsed.org/media/releases/2008/09/

A UK TV News program broadcast a lengthy item on it. Click on the following URL for links to the Channel 4 TV segment and to a subsequent article by Dominic Lawson, who was interviewed, published in The Independent: http://blogs.downsed.org/downsed/2008/09/uk-channel-4-ne.html

BBC News report: http://news.bbc.co.uk/2/hi/health/7620742.stm

Arabic translation of "Living with Down Syndrome" published online

"Living with Down Syndrome", the popular and highly regarded introductory book in the Down Syndrome: Issues and Information series published by DownsEd International is now available in Arabic.

You can read it online, download and/or print it from here, or forward this url by email: www.dsansw.org.au/index.php?pg=473

The book is an excellent introduction for family members and for professionals new to working with people with Down syndrome. Many new parents have welcomed having this book available in the early days.

The Vietnamese translation is also available from the linked page.

Another new Arabic resource posted on the same web page is the Notes on "Ears and Hearing" - from a seminar for Arabic speaking parents This event was held on 30th April 2008, with an English speaking presenter and an Arabic interpreter.

The Lancet: Shift in priorities for Down's syndrome research needed

The Lancet, Volume 372, Number 9641, 6 September 2008, "World Report" article, by Kelly Morris, discusses where research funding into aspects of Down syndrome is going, and whether current priorities are the most appropriate.

People are living longer with Down's syndrome, yet a paucity of research exists, say many experts. Tensions between funding different aspects of research have divided the field, but several new initiatives are now underway, which might also prove useful in other disorders. Kelly Morris reports.

The full text of the article is available here (requires free registration).

Pension penalties make it even harder for the disabled to work: letter to the editor

The lead letter to the editor in today's Sydney Morning Herald addresses further concerns about the Disability Support Pension, to those raised by Adele Horin on Saturday. David Rafferty wrote:

The inequities associated with the disability support pension outlined by Adele Horin ("Disability pensioners find the going toughest of all", September 13-14) are compounded by a further injustice when a person with a disability gets a job.

People with permanent disability, particularly those with intellectual disability, are subject to draconian rules that deprive them of some or all of their pension when they earn wages. The perceived loss of long-term security caused by the loss of the pension (along with pharmaceutical and other associated benefits) is a significant barrier to employment.

Read the full text of the letter here.

Disability Employment Services Review

A Federal review of Disability Employment services was announced earlier this month. From the Department of Employment and Workplace Relations announcement:


Overview

As part of its commitment to improve employment services, the Australian Government is reviewing disability employment services – Disability Employment Network (DEN) and Vocational Rehabilitation Services (VRS). This review is being undertaken within the broader context of the General Employment Services Review , the development of a National Mental Health and Disability Employment Strategy and the National Disability Strategy.

On 3 September 2008, the Hon Brendan O’Connor MP, Minister for Employment Participation, released a discussion paper relating to the review of disability employment services. The Minister called for comment from current and potential services providers and other stakeholders, seeking their views on the future direction of disability employment services.

In conjunction with the release of the discussion paper, a series of consultations will be held.

Click here to read all of the information page.

Submissions can be made until close of business on 1 October 2008

Minister's media statement.

Disability pensions need immediate review too - Adele Horin

Adele Horin, commented in the Fairfax Press on Saturday on the omission of people receiving the Disability Support Pension in recent calls for increased payments to aged pensioners. Her column highlighted the case of a woman with physical disabilities, but applies to those with other disabilities too .......

Professor Peter Saunders of the University of NSW demonstrated in a 2006 study how the pension system failed to take account of the extra costs people with disabilities face. The poverty rate among people with disabilities was at least four times higher than among those without. He said the need to review their income payments was "urgent".

But in Canberra, no one heard. When the Howard government gave age pensioners and carers the $500 lump-sum seniors bonus, disability pensioners were excluded. And the Rudd Government followed suit in the May budget.

.......A compromise could be to pay pensioners another lump sum payment while they wait for a better system to be put in place - and this time, ensure Faye Druett and her fellow disability pensioners are included.

The full text is here, and was published nationally.

People With Disability Australia media release.

A school made for students with Down syndrome

Have you ever been so frustrated in looking for the ideal school enrolment for your child with Down syndrome that you wished you could create a school designed just to meet his needs?

Three mothers in New York did just that, and the IDEAL School of Manhattan opened in 2006. It sounds just like its name, IDEAL. It is expensive. It is interesting.

It's not just for students with Down syndrome, as you will see from its excellent website giving a lot of information (more than most Australian schools give online): www.theidealschool.org

Could/should such a concept be adapted to NSW?

US media on Sarah Palin and Down syndrome

Beverley Beckham is a regular columnist for Boston Globe, who writes from time to time about her grand-daughter Lucy, who has Down syndrome. This week she comments on the sidelining of media coverage of Sarah Palin (Republican VP nominee) in relation to Down syndrome, by commentary on her daughter: click here for her column and a fun picture of Lucy.

Judging by the column inches in Australian media, and broadcast time devoted to Ms Palin and her family, the US coverage must be hard to keep up with, Patricia Bauer's blog on news about aspects of disability has grouped together the relevant items under a single category, Palin and Down syndrome: Coverage soars. There are some very cute pictures of baby Trig Palin with family members.

You don't have to look far for plenty of opinions!

Research: very early developmental changes caused by Trisomy 21 are identified

Scientists have revealed the earliest developmental changes that lead to Down's syndrome.

The team from Barts and the Royal London (Hospitals) say the changes to embryonic stem cells are caused by the presence of an extra copy of chromosome 21.

The study, in the American Journal of Human Genetics, says the extra chromosome sets off a chain of genetic changes in the developing embryo.

Read the BBC News report here.

Reference:
Dean Nizetic et al, DYRK1A-Dosage Imbalance Perturbs NRSF/REST Levels, Deregulating Pluripotency and Embryonic Stem Cell Fate in Down Syndrome, The American Journal of Human Genetics, 04 September 2008

Read the abstract here, and follow the links for purchasing the full text of the paper.

A list of 24 international collaborators is credited with the research, led by Dean Nizetic from the University of London, and includes Assoc. Professor Gareth Denyer, from the Department of Biochemistry, University of Sydney.

National disability council meets for the first time

A new national advisory council providing advice to the Australian Government on the needs of people with disability, their families and carers is meeting for the first time in Canberra today.

The 28 members of the National People with Disabilities and Carers Council (NPWDACC) were announced by the Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin, and Parliamentary Secretary for Disabilities and Children’s Services, Bill Shorten. They include people with disability, carers, advocates and representatives from the disability sector.

“This extraordinary and diverse group of Australians have a demonstrated commitment to ensuring people with disability, their families and carers have the same life opportunities as everyone else,” Ms Macklin said.

One of the main jobs for the Council will be to advise the Government on the development of the National Disability Strategy, an election commitment and a key recommendation of the 2007 Senate Inquiry into the Commonwealth, State and Territory Disability Agreement.

The Council will consult widely with stakeholders and the community to ensure people with disability, their families and carers have a significant voice in the development of this important Strategy.

“The Strategy will set the direction of future disability policy in Australia and deliver real outcomes for people with disability, their families and carers. It will focus on caring needs, education, training, accessibility, employment, income and social inclusion,” Ms Macklin said.

“This Government recognises more has to be done to give people with disability, their families and carers real opportunities to be a part of Australia’s social, economic and cultural life,” Mr Shorten said.

“The Council not only has the know-how, skills and experience to deliver advice on innovative approaches to improving support and inclusion, they also know how to get things done.

“The Council’s work will also build on the Government’s recent ratification of the Rights of Persons with Disabilities on 17 July 2008 and look at ways to ensure equality for people with disability in all life areas,” Mr Shorten said.

Membership of the Council includes Anne Sherry (a DS NSW member) and Kirsten Deane (a member of DS Victoria), both parents of people with Down syndrome.

10th World Down syndrome Congress: Dublin, August 2009

The 10th World Down Syndrome Congress is scheduled for August 19th – 22nd 2009 in Dublin, hosted by Down Syndrome Ireland.

People with Down syndrome, their families and interested professionals are all invited. Submission of abstracts for presentations are now open.

Click here for the Congress website, with all details.

Three more titles in Down Syndrome: Issues and Information series available online: reading and writing for trhee age groups

Down Syndrome Education International's "open access" project is powering on, making their highly regarded publications freely available online.

Three books on reading and writing for children with Down syndrome from birth through teenage years are now available free online on Down Syndrome Online. These books are from DownsEd's acclaimed Down Syndrome Issues and Information education series.

This release bring the total number of online titles to 12.

Individual titles, packages related to specific age groups and the whole series can be purchased in print from the UK and from the US. Click here to find out how.

DS NSW Comittee 2008 - 2009

Down Syndrome NSW 2008 Annual General Meeting was held at 2:30pm on Saturday 30 August 2008 in the Ambassador Room, Burwood RSL Club.

At the meeting the Annual Financial Statements were presented and nominations were received for membership of the Committee. The 2008 - 2009 Committee was elected in an uncontested ballot.

President: Ken Hancock
Vice-President: Margot Elliffe
Committee members: Jennie Burrows, Kathleen Collins, Melissa Cotterill, Joe Lawler, Jacqueline Little, Chris Pollock and Andrew Richardson

The AGM was followed by a screening of the Blueberry Shoes film Crossing Tahoe: A Swimmer's Dream.

Proposed changes in State/Federal responsibility for disability and aged care

Senior political reporter, Michelle Grattan reports on very significant changes in the administration and delivery of care and services for people with disabilities in today's Melbourne paper, The Age:

Aged care would become completely the Federal Government's responsibility and the disabled would come wholly under the states in a sweeping revamp of roles proposed by the Rudd Government.

The overhaul of services for the aged and disabled was in a plan sent to the states on Friday.

The deal also involves the states getting extra power over mental health, which would be accompanied by additional funding — about $800 million over five years, according to sources. This would be for community-based services.

Having one level of government with full responsibility for the aged would allow Canberra to bundle together services more effectively.

It would aim to enable people to move with greater ease through the system as they grow older and more frail and go from home-based help to a nursing home. The Government already has responsibility for nursing homes.

The proposed date for the takeover of the other aged services is July 1, 2009

Click here to read more from the full text of the article

DS NSW Calendar 2009 - Feeling Fine, preorder now

Our 2009 Calendar will be available soon. You can pre-order now.

If you are on our mailing list, an order form to fax or mail back was included with your Spring 2008 Newsletter (mailing 29th August), or you can click here to download the order form.

Still priced at $15.00 each, including GST, postage and handling, the Down Syndrome NSW Calendar makes a great end of year gift for friends, family, teachers, and an enduring source of awareness about people with Down syndrome.

Email this link to friends to the order form and order their own copies: www.dsansw.org.au/index.php?pg=109

Debate on draft policy on Maintaining Respite Capacity Policy

Release of the NSW Department of Ageing, Disability and Home Care's draft policy on Maintaining Respite Capacity has stimulated robust comment, much of it appearing in The Sydney Morning Herald's editorial and letters-to-the-editor pages:

Plans to oust the disabled anger parents Adele Horin (22/08/2008)

Horrifying gap between powerful and vulnerable Phillip French (scroll to the second letter on this page) (23/08/2008)

As much as I love my son, I had to refuse to bring him home Wendy Dickinson (25/08/2008)

Disabled overstayers in care a burden to other needy families Minister for Disability Services, Kristina Keneally (26/08/2008)

Problems in respite care stretch beyond overstayers four responses to Minister Keneally, from Brian and Helena Wilder ; Anne Elysee; Jeanette Moss; Mike Sprange (27/08/2008)

News article about an 80 year old man with Down syndrome

We are asked several times each year about the greatest age that a person with Down syndrome has reached, and each year we hear about several people living into their 70s. There is great interest in the health of older people with Down syndrome, and in what we can learn about the ageing process.

The Waseca (Minnesota) News reports about Bert (Junior) Holbrook, who celebrated his 80th birthday last Sunday. Mr Holbrook was raised at home, in a time when that would have been unusual, and enjoyed the benefits of a small community. His health has deteriorated with his advanced age, and he is now a valued resident at Elm North, a health care facility in the town. He lives a remarkably active life, and might be the world's oldest man living with Down syndrome.

Click here for the article and a photograph.

Let's NOT Boycott Tropic Thunder, to make the point

The movie, Tropic Thunder has opened here in Australia, to barely a ripple of protest, less than rave reviews (but it hasn't been slammed in the popular press, either), and an occasional nod to protests by disability activists in the US - so it seems it will have the expected audience, will certainly make money, and have significant competition from much better movies at the same time.

Pam Wilson, a writer on disability issues (and the mother of an adult son who has Down syndrome) has had Second Thoughts on the Tropic Thunder Boycott . She says in part,

.....today I realized I want everyone in the USA to see Tropic Thunder. Every neighbor, school principal, police officer, store clerk and medical professional should see this movie while it is in theaters. I want them to know why people with disabilities and their families were shocked and angry, deeply hurt and disappointed - and why they called for a boycott of this film and DVD.

It doesn't matter if audiences understand while watching that this movie, written to poke fun at Hollywood insiders, causes overwhelming distress to worried moms of newly diagnosed babies and alarms families of kindergartners to high school seniors ready to transition to ordinary adult life. School principals and parents of our children's classmates need to know what anti-bullying progam in their schools are up against.

If everyday people don't see this movie right now, what we write will not make sense to them. Tropic Thunder has an 'R' rating and movie reviewers give it five stars. They can't expect us to be reliable reporters when none of us wants to see the film and those who have say it's worse than expected. How can we expect the general public to understand the dread we feel at the thought of the 'extras' that will be available when the DVD is released, when they are unaware of the excesses of the basic picture?

Click here to read the full text of her article on BellaOnline

Video response to why words hurt

Click here for a very short clip, made about "people with intellectual disabilities who stand to be hurt by thoughtless, cruel names they might be called", and the only "R" word they need. It is a much, much better film.

Thank you, Will Schermerhorn and the ARC of Northern Virginia for making it freely available to the world.

Sometimes we are at a loss for the best way to respond when someone we care for is teased or bullied, and we resort to recommending that they "just ignore it" - we recommend Dave Hingsburger's booklet "The R Word" for anyone looking for a more effective alternative. It is a very small book - just 25 pages - but a powerful source of effective thinking and action to help you support the person who has been bullied. If you are member of Down Syndrome NSW, you can borrow a copy from our library, or purchase it from www.diverse-city.com (it's not on the book list, but email them)

John Stephens, 26, has his say on the use of "retard" in Tropic Thunder

We've heard a lot about "Tropic Thunder", much of it extremely uncomfortable.

We've heard from the stars, writer, producers, people who think it is appalling, people who think it is top comedy, disability rights activists, many families and others with strong opinions of all colours.

Now Patricia Bauer has included in yesterday's blog entries, a very telling piece written by a young man with Down syndrome, John Franklin Stephens. Read the extract here and a link to the full article in the Roanoke Times is included.

Enough said, and very well said.

Case study of an unusual 70 year old man with Down syndrome

The Americian Association on Intellectual and Developmental Disabilities has published a case study of a man with Down syndrome who has reached 70 with no evidence of cognitive decline. He is participating in a 20 year longitudinal study of hundreds of people with Down syndrome, and is the oldest person studied in this detail without signs of dementia.

The study concludes:

The processes regulating aging and dementia are extraordinarily complex, and it is unlikely that a single mechanism can fully explain the spectra of change and stability that occur with successful and unsuccessful aging in individuals with Down syndrome. As more information is discovered about the genes on chromosome 21, their products, the impact of the occurrence of an extra copy of chromosome 21 on the rest of the genome, and the effects of nongenetic factors, researchers will achieve a better understanding of the underlying factors and mechanisms that contribute to all aspects of phenotypic variability associated with Down syndrome (see Jenkins & Velinov, 2001). This will lead potentially to better strategies for minimizing disability and for promoting successful aging to an even greater degree than has been seen over the last several decades.

The full text is available here.

Reference:
Krinsky-McHale, S, et al, Successful Aging in a 70-Year-Old Man With Down Syndrome:A Case Study, Intellectual Developmental Disabilities, 46: 3: 215–228 June, 2008

"Tropic Thunder" - controversial movie opens in Australia this week: 21st August

The controversy about the new movie "Tropic Thunder" continues. An active campaign by disability groups and individuals in the USA leading up to and after its premiere in LA last week has generated some heated exchanges, but has not resulted in any changes to the movie, or any recognition from the producers that there is anything they should even reconsider.They continue to claim that opponents have no sense of humour and do not understand satire .....

Patricia Bauer continues to run the most comprehensive coverage, and has the advantage of actually having seen the movie (she did not like it): www.patriciaebauer.com/category/movies/

None of the peak disability organisations in Australia or the UK appears to have taken up the issue - and there may be a good argument for not drawing even more attention to the movie. However, it might be one that you want to at least discuss with the moviegoers in your household.

Gastrostomy Information and Support

This website and forum could be useful for the small number of families whose children with Down syndrome have extreme feeding difficulties, and have to consider or actually have a PEG (percutaneous endoscopic gastrostomy) for temporary or long term nutrition:

The newly launched online GISS Forum can be accessed through the GISS website: www.giss.org.au

“This forum is for information sharing, seeking support and raising issues related to gastrostomies and jejunostomies.”

The website includes contact details for the NSW branch of GISS, and the services GISS provides.

The Other Film Festival: Melbourne 3 - 7 September 2008

What are you looking at? New cinema by, with and about people with a disability

35+ Australian and international films - 20 sessions and forums

Melbourne Museum, Nicholson Street, Carlton
presented by Arts Access Vicoria


Now in its third year, theis is Australia's only disability film festival!

The program includes three screenings of the short film Yolk, starring Audrey O'Connor, which debuted at the 2007 Sydney Film Festival's Accessible Cinema program.


All festival details are available from the website: www.otherfilmfestival.com


If you are in Melbourne during 3 - 7 September, it will be well worth a visit.

After school support for parents of teenaged students with disabilities

News Release, 10/08/2008: The Hon. Kristina Keneally MP, Minister for Disability Services

The NSW Government will launch a one million dollar pilot program called Teen Time – After School and Vacation Support for Working Parents, to give parents of teenagers with an intellectual disability a boost in respite so they can pursue jobs and study.

“The two year, $928,000 pilot of Teen Time, has been developed in direct response to the needs of carers of secondary students with an intellectual disability.

“The program, to be launched within the next two months, will be available to parents and carers of up to 81 teenagers with intellectual disabilities who need a helping hand so they have the time to get a job, keep a job, or do some study to help them qualify for a job.

“Initially the Department of Ageing, Disability and Home Care (DADHC) will carry out the trial in four locations – Epping, Kellyville, Merrylands and Werrington. It will cover three hours a day for 40 weeks of the year at each location, plus 10 hours a day for up to nine weeks of school holidays.”

We will trial Teen Time to see if it improves support available to the parents who need it, and if the pilot shows promising results we will look at rolling it out at other locations,” Ms Keneally said.

NSW Dept Ageing Disability and Home Care seeks feedback on two draft policies

Draft Allocation of Places in Supported Accommodation: policy and procedures
This draft policy is to replace the existing Placement of Clients in Group Homes policy, in line with the commitment made under Stronger Together, a new direction for disability services in NSW 2006-2016.

It details the processes for being placed on the state wide accommodation register, declaring a vacancy, allocation committees, appeals, refusal of offers and transition to a placement.

Draft Maintaining Respite Capacity Policy
This draft policy outlines DADHC's approach to relocating clients who remain in respite beyond their planned stay to permanent accommodation services. The policy has separate sections for children, young people and adults.

For both draft policies, DADHC is seeking feedback from people and organisations with an interest in accommodation services for people with a disability.

Down Syndrome NSW will submit comments, but individuals can also comment.

Click here to download both documents from the DADHC website.

The closing date for feedback is 12 September 2008.

World first as Australian indie-band invited to play United Nations in New York

Rudely Interrupted have been invited by the United Nations to perform in the Dag Hammarskjold Auditorium on the 3rd of December 2008 to mark International Day for People with Disabilities.

Rudely Interrupted are one of Australia's truly unique indie rock acts. 5 out of the 6 members share a range of both physical and intellectual disabilities (Blindness, Deafness, Aspergers, Autism and Down Syndrome) but most importantly, a common interest in self expression through music. Their achievements, both personal and professional to date are extraordinary.

A born performer, bass guitarist Sam who has Down Syndrome loves to show off and wants to be a famous rock star. “I used to play drums at school. But this is the first time I've played bass. I want to fly over the audience with fire and explosions and lightning.”

• ABC News report
• Rudely Interrupted's website: about the band, news, links to video and MP3, merchandise

New website offers information at diagnosis of Down syndrome

Brighter Tomorrows is an initiative of of the Interdisciplinary Human Development Institute, University of Kentucky, providing families with balanced and accurate information about receiving a diagnosis of Down syndrome either during their pregnancy or at birth.

It is a valuable contribution to worldwide efforts to meet the needs of parents for information as both technology and professional practice see prenatal testing much more widely implemented than ever before. Families receiving the diagnosis at or soon after birth increasingly turn to the internet for instant access to the information they seek.

A link has been added to the Down Syndrome NSW web pages for New Parents.

Tropic Thunder: a movie sure to offend?

A new Ben Stiller movie, Tropic Thunder is scheduled for release in the USA on 13th August. The intended humour of the script leans heavily upon lampooning people with intellectual disabilities, and makes frequent use of the term "retard".

Hardly surprising then that it has caused controversy even before it opens, and that people with disabilities and their advocates are organising protests and meetings with the film's makers.

Patricia Bauer's blog, News and Commentary on Disability Issues is covering the campaign, with five posts to date, and many comments, the most recent is here, followed by links to earlier posts.

Updated 5/08/08: A new post on 4/08 calls for "reader's advice" on what the movie's producer's and distributors should be asked to do, and offers some excellent suggestions. A meeting between disability advocates and Dreamworks is scheduled for Wednesday 6/08 (Pacific Time).

The movie is scheduled for release in Australia from 21/08/08.

Better Care for our Carers: Overwhelming response to Commonwealth inquiry

Media release issued 28th July
by Annette Ellis MP, Chair, and Hon Judi Moylan MP, Deputy Chair
House of Representatives Standing Committee on Family, Community, Housing and Youth

The House Family and Community Committee has been delighted with the overwhelming response to its inquiry into better support for carers.

Carers are those who look after others, usually family members and friends with a chronic illness, disability or frailty. So far the Committee has received some 1,200 submissions to the inquiry, most of these from carers themselves. Because of the demands placed on carers they are often exhausted, socially isolated and under financial pressure as they find it difficult to access the jobs market.

"The fact that so many carers have taken scarce spare time to contribute to the inquiry indicates their levels of concern" said Committee Chair Annette Ellis. Ms Ellis reminded people that the inquiry was a public process and that as soon as the Committee meets to formally receive these submissions, they will be placed on the Committee’s website for all to read.

Public hearings for the inquiry have already begun. These hearings provide an opportunity for the Committee to talk first hand to carers and to the groups that support them. Ms Ellis reported that the first hearing, in Perth on 23 July, had been a great success. A feature of the hearing was a round table meeting with individual carers which enabled them to raise their concerns with the Committee in an open public debate. Ms Ellis said that the Committee would repeat these round table meetings at all other hearings, including those already scheduled for Sydney, Melbourne, Adelaide and Brisbane.

Ms Ellis predicted that the Committee would also travel to other capitals and to rural areas. The submissions received so far indicate that carers in regional and remote areas face even greater challenges of isolation, finding services and respite.

People interested in the inquiry are encouraged to check the Committee website regularly: www.aph.gov.au/fchy . Submissions will be made available as quickly as possible and details of future public hearings will be posted. Transcripts of the public hearings will also be made available shortly after the hearings are held.

Ms Ellis said the inquiry was an important and timely opportunity for carers to have their say in a public process. The Committee looks forward to meeting more carers, listening to their concerns and discussing ways in which the government can offer them better support.

Carers NSW reports that it will be attending the inquiry committee's public hearing to be held in Sydney on Wednesday 6 August, represented by Elena Katrakis, CEO, and Sheree Freeburn, Aboriginal Policy and Development Officer. Carers NSW also nominated carers to participate in a Carers Roundtable that will form part of the hearing.

Carers Australia Virtual 2020 Summit throughout August

Carers Australia has launched an online "2020" - a summit just for those who care for others who are elderly, physically or mentally ill, and/or have a disability, modelled after the April 2020 summit in Canberra. It is now live, and will continue throughout August.

The purpose of the online 2020 is to look for and explore big ideas that will support Australia’s growing population of carers and their families.

Participation is open to anyone who wishes to comment.

Click here for the Carers 2020 website, to learn more and to register to participate.

Senator Helen Coonan wrote about the Carers 2020 in her column for "By Invitation Only" in today's Fairfax press - click here to read the column.