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– it is clear that some elements in the draft must be withdrawn or substantially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.