Tuesday, 30 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

Monday, 29 September 2008

Eureka International presents

Geoff Morrell in

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.

Tuesday, 23 September 2008

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.

Sunday, 21 September 2008

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

Thursday, 18 September 2008

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.

Tuesday, 16 September 2008

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.

Monday, 15 September 2008

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:


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.

Thursday, 11 September 2008

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?

Sunday, 7 September 2008

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!

Friday, 5 September 2008

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.

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.

Thursday, 4 September 2008

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.

Wednesday, 3 September 2008

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.

Tuesday, 2 September 2008

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

Monday, 1 September 2008

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