Does your son or daughter have obstructive sleep apnoea?

Would you like to contribute to medical education?

Down Syndrome NSW has been invited to participate in a learning unit for third year medical students from the University of Western Sydney. The students will be researching the impacts of sleep apnoea on people with Down syndrome of all ages, and the impact on everyday family life.

They need to speak with families on two occasions, during March/April 2010, for some hands-on information. The interviews/meeting can take place in your home, at you convenience.

We are interested in people with DS of all ages, and from any area, whether your son or daughter has been successfully treated for sleep apnoea or not, whether you have completed formal sleep studies or not.

If you are interested in participating, please contact us on info@dsansw.org.au – initial expressions of interest can be made before the Christmas break

The Enchanted Forest - fundraiser, 2010

Kids for Life 6th Annual Ball

The Enchanted Forest
27th March 2010

Hordern Pavilion

Go to www.kidsforlife.com.au for tickets and further details.
Down Syndrome NSW will be a beneficiary in 2010.

Good Weekend magazine

The Good Weekend magazine (distributed with the Sydney Morning Herald and The Age in Melbourne) is celebrating 25 years of publications. In a special edition to mark the occasion, GW reprised a selection of highlights from the popular "The Two of Us" column, with a catch -up on what "seven of the most memorable duos" are up to now. Among them were Nick Hogan, and Damien Jones, who featured in July, 2006. Greg Bearup brings readers up-to-date:

Damien Jones was a young punk at uni when he met a Down syndrome kid, Nick Hogan, who insisted on joining his game of park soccer. They became friends and, after checking him out, Nick's parents asked Damien to be their son's babysitter and, later, flatmate.

"Damien is the closest friend I have ever had," said Nick. "I love him. He makes sure I do the right things. He helps me save my money. He is always gentle and tells me funny jokes."

Nick helped Damien to grow, too. "I had come from a pretty dysfunctional family ... It gave some structure to my life and gave me a sense of responsibility to be there for him."

Damien has moved to Melbourne, but "we talk on Skype all the time and [my wife] Karoline and Juno, our little girl, are often up in Sydney, visiting Nick and his family," says Damien. "Nick is fantastic with Juno and they'll play together for hours." Damien and his family are planning to go on a Pacific cruise with Nick and his girlfriend, Ruth. "It's gonna be crazy," says Damien. "Cool, but crazy."

Click here for the original column which was reprinted in the DS NSW Newsletter, Spring 2006.

Playgrounds for everyone

These children’s playgrounds have been designed to be accessible for all kids, and are open to everyone, so kids can play side by side.

All Abilities Playground
Bernie Mullane Sports Complex
Marella Avenue, Kellyville
(this one will be officially opened by Baulkham Hills Shire Council on International Day of People with Disabilities, 3rd December 2009)

Livvi's Place,
Timbrell Park, Five Dock
www.touchedbyolivia.com.au

World Down Syndrome Day Art Competition!

Enter our World Down Syndrome Day Art Competition – and help us create a series of unique greeting cards for World Down Syndrome Day, 21st March 2010.

The greeting cards will contain seeds of native plants, so recipients of the cards will be able to plant a seed for World Down Syndrome Day – and help understanding and acceptance of people with Down syndrome to blossom and grow in our community.

Entries from children and adults with Down syndrome and brothers / sisters especially encouraged.

Send drawings, paintings or artworks in whatever medium you like to events@dsansw.org.au or by post to (no stamp needed):

Phillip Prideaux, Executive Officer
Down Syndrome NSW
Reply Paid 2356
North Parramatta NSW 1750

Prizes include the honour and glory of having your artwork on one of the official World Down Syndrome Day greetings cards, as well as some other goodies.

Competition closes: Friday January 29th 2010

Inquiries: Priscilla Leong 9841 4402, priscilla@dsansw.org.au

InterACT 3 day Holiday Workshop January 2010

Powerhouse Youth Theatre and Accessible Arts

Street Dance
This workshop is open to 15 to 18 year olds of mixed abilities. Great for young people living with a disability and their friend and/or siblings. The workshop will be conducted over three days x 3 hour sessions. Spaces are strictly limited to 15.

Where: Fairfield School of Arts

What: a workshop on the latest street dance moves, culminating in a performance for family and friends

When: January 20th – 22nd, 10am to 1pm.

Price: $10 for the 3 days (Highly subsidised and cheap as chips)

Enquiries please phone: 9724 6077 or email Matt matt@pyt.com.au

To register now download, complete and return the registration form to Powerhouse Youth Theatre.

Newcastle: Up Club for kids

Newcastle Temporary Care has a new group providing a social activities for children with Down syndrome. They’ve chosen the name Up Club, but this one is for kids.

• The group is for primary school aged children, with Down syndrome, in the Year 3 to Year 6 age range.
• Participants need to meet the eligibility criteria of Newcastle Temporary Care Ltd. and apply to become clients of the service (if not so already)
• The programme will run on one Saturday a month during school terms
• Activities will vary from month to month and may include activities like bowling, theatre, picnics, bus trips etc. Activity ideas from parents and participants will be encouraged!
• Costs will vary depending on the monthly activity.

Christmas Outing to Dizzyland! (Sat 12 Dec) – The group will travel up to Dizzyland (Port Stephens) for a great day of fun! Cost will be $20.00

For further information, and to RSVP for the picnic, contact: Elizabeth Hyslop on 4957 5008 or 4956 2977 or tempcare@bigpond.com

Dance for Down Syndrome is a new organisation, launched in Sydney this week.

The D4DS Dance-A-Thon will be held over two weeks in March/April 2010 leading up to and around World Down Syndrome Day on March 21st.

Schools are invited to join in the Dance-A-Thon. The date and time can be at the school’s convenience within those 2 weeks. Any type of school, public or private, mainstream or special, dance school or music school, day care centre, preschool or university, can participate.

See the Dance 4 Down Syndrome website, www.dance4downsyndrome.com.au, for more information about the 2010 Dance-a-thon, and the D4DS organisation.

An Afternoon of Fashion

An awareness event and fundraiser for Down Syndrome NSW
Fashion by Leila Sweeney

3.00 pm Sunday 13th December
Walcha Sports Club

Walcha, NSW

Tickets $15
For further information and tickets, contact Sonya, on 6777 2896

Free event to launch Pacific Jewel will benefit Special Olympics and the Leukaemia Foundation

On Saturday, 12th December 2009, P&O Cruises will be launching their latest cruise ship, the Pacific Jewel. To celebrate the arrival of Sydney's latest superliner, P&O have organised a massive South Pacific Christmas Festival.

This festival will be a fun, family event which will feature an amazing range of live entertainment, that includes IDOL Winners Stan Walker and Wes Carr, a visit from Santa, face-painting, aerial circus displays and fireworks!

Event: ‘South Pacific Christmas Festival’ welcoming Pacific Jewel
When: Saturday, 12 December 2009
Where: Overseas Passenger Terminal Forecourt, Circular Quay, Sydney
Time: 5pm – 9.30pm

This event will be a free public event, so make sure you tell your family and friends and get out and support this great FREE family night out!

All proceeds from the event go to Special Olympics and the Leukemia Foundation

Click here to download a flyer

Source: Special Olympics

Up, Up and Away DVD and manual launched

The beautiful Sydney Opera House was a spectacular venue in which to celebrate the launch of the DVD and Project Manual developed by the Up, Up and Away Project .


The package documents the Project’s progress, stages and success, and makes it available to others to implement in the broader community.
Prof Derek Armstrong, Pro-Vice Chancellor of the University of Sydney described the DVD as ….. such an uplifting, inspiring and joyful video... the video and the young educators project just shows that people with disabilities have so much to teach society... to teach university students.

In acknowledging the participants, Miriam Stevenson, the first Project Coordinator said that “….their overwhelming message was we want we want to work, we want to participate, and we want to make a contribution.

“Our young people express the need for friendship and connection ...... sincerely, ..... clearly.” Concepts such as Up, Up and Away “.... can operate so that the person at the centre can make plans, develop their skills, build friendships and get their lives going in the direction they want it to go.”

The Up, Up and Away Circles of Support Guidance Manual and DVD package is available to purchase form DS NSW for $59.95 – contact Angela Adams on 9841 4409, admin@dsansw.org.au or click here to download an order form. The DVD alone can be purchased for $22.

Australian Government to Consider New Approaches to Disability

The Australian Government's media release on the Productivity Commission inquiry into the delivery of disability services announced on Monday is available online here. It reads in part:

The inquiry forms part of the Australian Government's ten year National Disability Strategy being developed with State and Territory Governments and in consultation with the National People with Disabilities and Carer Council.

The Productivity Commission inquiry will examine the feasibility, costs and benefits of replacing the current system of disability services with a new approach which provides long-term essential care and support for people with severe or profound disabilities however acquired.
The inquiry will examine a range of options for long-term care and support including consideration of whether a no-fault social insurance approach to disability is appropriate in Australia. It will also examine if a scheme would fit with Australia's health, aged care, income support and injury insurance systems.

These are complex issues that require rigorous analysis, design and costing. The feasibility study will assess whether a long-term care and support scheme would be appropriate, practical and economically responsible in the Australian context.

The Productivity Commission will consult widely and will be assisted by an associate commissioner with specialist disability expertise. An independent panel of experts will also be established to advise the Productivity Commission and Government during the Inquiry. The Australian Government will appoint the associate commissioner and the independent panel of experts shortly.

The Productivity Commission will report to Government in July 2011.

Library Thursdays: Other libraries of interest

We like to think that our library has a great collection of materials pertaining to Down syndrome. However, it is not our focus (or within our budget) to be able to provide every material you may want from the broader areas of disability, inclusion, learning support. Fortunately, there are some great libraries out there that you can access.

The NSW Department of Education and Training and the Sherlock family set up the Jill Sherlock Memorial Learning Assistance Library in memory of Jill Sherlock who was a support teacher in Western Sydney. It has resources to help students with learning difficulties. The catalogue is online and you can also pose a question for the librarian via the web. Teachers as well as parents can join the library at no cost.

Another useful library if you need resources on inclusion, is the FamilyAdvocacy Inclusion Collection. Family Advocacy supports families of people with an intellectual disability. The collection provides resources with the aim to "support and inspire" and articles and videos have practical examples of how people with intellectual disabilities can be included in the community. A reading room highlights the latest resources. (A few articles on self managed community participation.) Resources can be searched for online. Articles from the library are emailed at no cost or they and other resources can be mailed with just postage charges.

The NSW Council for Intellectual Disabilities in Surry Hills have a reference library, the Jim McLoughlin Reference Library which is open to people with intellectual disabilities and their families and carers plus others who are interested. The catalogue is not online, but you can send a request for information from their website. The library can be accessed Monday to Friday 10-4 by appointment.

The Nepean Area Disabilites Organisation have a Specialist Disability Information Library. It is lo

cated in Penrith and is open to anyone who wants to join for a small fee. Their catalogue is available to search and reserve items online. The collection has a wide range of resources relating to information about various disabilities, therapies, support, and services.

Of course, we hope that most of the time you will find what you need in our library. Members may borrow resources for 4 weeks and may renew if necessary. To obtain resources, call or email us with specific requests or ask our advice. Resources can be picked up from the library or we will mail them out to you. You are responsible for returning them on time so that others may access them. Donations to help with postage costs are welcome. Non-members may come into our offices to use the materials Monday to Friday 10-4. Information is also available from our website as well as by phone.

Fun and games ..... more from Families Weekend

It wasn't all high flying, speed and action at Families Weekend. There was some seriously good face-painting on offer too .......

You had to still really still ......


..... but it was soooo worth it!

Kingsdene students visit Parliament

Return of the forgotten children
Mark Wetherall,
Sydney Morning Herald, November 24, 2009

Just getting the six children from Sydney's Kingsdene School to question time in Canberra was a triumph over chaos.

They had come to Parliament House to make a case for the special treatment which the Government had refused to maintain.

The children are profoundly disabled. Shepherded by parents, siblings and helpers, they whooped and rambled their way through the corridors of power.

''Some of the kids behaved in ways that would emphasise the need for Kingsdene,'' said one parent, Mary Lou Carter, whose son, Nicholas, she says has developed extraordinarily well because of the school.

Read the full story here.

Feasibility study on NDIS announced

The 7.30 Report (ABC TV) reported the Federal Government's announcement of the Productivity Commission's feasibility study of a National Disability Insurance Scheme last night Click here for the TV report.

Other media:

Insurance scheme may allow lifetime care for disabled
Mark Davis, National Editor
Sydney Morning Herald, 24/11/2009

The Federal Government will consider introducing a Medicare-style national insurance scheme to provide lifetime medical treatment and care for people with serious disabilities.

The Prime Minister, Kevin Rudd, announced last night that the Government would conduct a feasibility study into ways to fund and deliver long-term care for severely and profoundly disabled people who needed daily help.

The Productivity Commission will be asked to examine a social insurance model, which could be funded by a levy across the whole population, to care for those born with severe disabilities and those who become disabled in accidents.

Mr Rudd said the inquiry would examine the costs and benefits of replacing the existing system of disability services with an approach that would provide long-term essential care and support, no matter how people acquired their disability.

Read the full story here.

Links to media on the announcement is gathered on the "News" page of the National Disability Insurance Scheme campaign website.

Flying high .......

This year's Families Weekend was held at The Tops, Stanwell Tops, overlooking the ocean from the edge of the Illawarra escarpment. The spectacular views provide a stunning background to the adventure activities available at The Tops. It was an active weekend!

The Giant Swing was breathtaking but everyone came off the swing with beaming faces and a huge sense of achievement. Many people of all ages wanted to have a go, even if they were a bit anxious. Once they were up and flying, it was an adrenaline rush and many wanted to come back for more!

DS NSW Annual Report

Our Annual General Meeting was held on Saturday (21st November), at our new office.

The balloons were to let people know they had the right address, since it doesn't really look like an office (one of the nice things about it) - we enjoy our work, but it isn't a party every day.

Our Annual Report for 2008 - 2009 is now available online here, or you can request a print copy from our office - admin@dsansw.org.au

One year of counting ......

It is one year today since we added a counter to this blog, wondering of course if anyone was reading. Apparently they are. 18,188 individual visits had been recorded by early this morning, mostly from within Australia, as expected, but a few from elsewhere. Traffic has doubled since the first full month of counting, and still rising.

Feel free to comment (although like any blog we've attracted the odd random, totally unrelated spam comments which have been removed), and let us know what works, and what doesn't.

Thanks for reading.

Glee, episode 9

So what did you think about the storyline involving "Becky" and "Jean", both characters who have Down syndrome, in last night's episode of Glee?

One 19 yr old sibling of our acquaintance thought it was fantastic (she is a Glee fan - apparently known as a Gleek !) and was touched by the twist that introduced Jean. She said it was not "cheesy", and that it was respectful. Her brother who has Down syndrome was too busy to watch it.

If you missed the episode, you can catch it here.

Now that's a Circle of Support!

Sophie brought her family along to Buddy Walk - Australia 2009 in Newcastle last month. It was a beautiful day in a beautiful setting. Some of the blue through the trees is the water of Newcastle Harbour. There was entertainment, fine food, and a lovely walk along the Harbour foreshores.

The event was very well organised, and will grow - the Lord Mayor of Newcastle has "adopted" it, promising ongoing support. Well done all round - a very enjoyable day.

Access All Areas Film Festival November 16 to December 3

Access All Areas Film Festival visits venues across NSW from November 16 to December 3 2009, featuring free screenings of acclaimed Australian films, which will be made accessible to people with disability.

This unique event is accessible to all with free entry to all screenings and special accessibility services for those who need them. All films will be audio-described for people with a vision impairment where on-screen action is described in between dialogue and transmitted to an individual audio receiver (provided by the festival), captioned for the hearing impaired and wheelchair accessible. Screening intros, panels and Q&A’s will be Auslan interpreted. Bookings essential for access services, please call the Festival office on 02 9281 5608 to make your booking.

Access All Areas Film Festival is a flagship event of the 2009 Don’t DIS my ABILITY campaign to celebrate International Day of People with a Disability. Tickets are available from the box office 30 minutes prior to the start of the screening, subject to availability it is recommended to book in advance by calling the Festival office on 02 9281 5608.

For the full program of events, visit www.accessallareasfilmfestival.com.au.

Expert commentary on Stanford research

The Stanford Down Syndrome research Center's study into brain function in a mouse model for Down syndrome (published yesterday) is being reported by media worldwide.

ABC radio's The World Today covered the news yesterday, interviewing Dr Ahmad Salehi from Stanford, and with comments from Dr Bill Warren from James Cook University. Click here for a transcript and a link to the audiofile to replay the segment.

Science News: Interview with Prof William Mobley (former Director of the Stanford Down Syndrome Research Center, now at San Diego, and one of the co-authors):

Science Now: summary of the research study concludes with this comment from another highly respected scientist working in Down syndrome research ....

"It's a very positive development," says Roger Reeves, a geneticist at Johns Hopkins University in Baltimore, Maryland. He notes that other recent rodent studies have suggested that drugs that target the neurotransmitter GABA, among others, may also help improve cognition in Down syndrome. Although some researchers have begun to test such cognitive-enhancing drugs in people with Down syndrome, Reeves says the studies to date have been small and fraught with methodological problems, so he doesn't consider them to be reliable. Even so, he says, "5 years ago I never would have believed we would be looking at this kind of fundamental therapy for Down syndrome."

Reference for the original research paper:

Salehi, A. et al, Restoration of Norepinephrine-Modulated Contextual Memory in a Mouse Model of Down Syndrome, Science Translational Medicine, 18 November 2009: Vol. 1, Issue 7, pp. 7 - 17 (DOI: 10.1126/scitranslmed.3000258)

The abstract is available online here, with links to purchase options for the full text of the article and supplementary material. The cover image represents Trisomy 21.

The full text will be freely available online one year after publication.

UK article about Stanford research

And here's a British news article from Times.online about the Stanford research released today, with what would have to be one of the cutest pictures of a baby/toddler with Down syndrome you've ever seen.

New brain research report from Stanford

An interesting new research study on particular brain functions in mouse models of Down syndrome has been released by the Down Syndrome Research Center at the Stanford University School of Medicine, in California. The work builds on earlier studies, and the researchers caution that it is a long way from a clinical application, and is not a "cure" for Down syndrome:

This research has revealed another potential therapeutic strategy to improve learning in a mouse model of Down syndrome. As you can read in the article ..... these findings are very promising. However, we would like to emphasize that these studies were done in a mouse model and more work is required before commencing clinical trials in humans.

But it is interesting science, from a highly regarded center, that might well be useful for people with Down syndrome in the future.

Library Thursdays: Booklets from DSA UK online

The Down's Syndrome Association in the UK has a variety of booklets on all aspects of Down syndrome. These are available to look at online in PDF format.

Topics include:

• Managing sleep problems in children with Down's syndrome
• Information on teaching numeracy and mathematics to students with Down syndrome
• Information on teaching reading to students with Down syndrome
• Notes for teachers on behaviour
• Bereavement
• Thyroid disorder among people with Down syndrome (for parents)
• Thyroid disorder among people with Down syndrome (for doctors)
• Eye problems in children with Down syndrome
• Top 20 questions about speech, language and communication for children with Down syndrome
• Down's syndrome and childhood deafness

There are many more. To look at any of these and the rest, click here and select the area of interest. If you have any trouble accessing them, let us know as we have copies available in the library or go to DSA UK's home page and look under Resources and Publications.

Hope some of you can come along to the AGM this weekend, have a look at the library and borrow something. If you can't make it on Saturday, you can still borrow. Have a look at the library lists and then just email us and we'll send it out to you.

Abstracts from the 10th World Down Syndrome Congress now online

Down Syndrome Ireland hosted the 10th World Down Syndrome Congress in Dublin in August 2009, and has now published the Abstracts of the Congress papers online here.

The full proceedings will be published in time.

These young people from NSW travelled to Ireland for the Congress (and beyond, for holidays, having travelled so far) - and had a wonderful time.

Media-dis-n-dat (blog)

Media-dis-n-dat is a blog about the media and disability. Blogger BA Haller's profile says:

I have studied the media for almost 20 years and this blog is about my research interest: the media and disability. The media have real power to define what the public knows about disability and that's what I investigate. I am also a writer and media watcher. In addition, I want to use this blog to create a database of media stories on disability topics from around the world.

Two recent posts about people with down syndrome in the media are:

• Award-winning Spanish actor with Down syndrome pushes for inclusive education worldwide (15th November)
  
• College student with Down syndrome shatters stereotypes with her many presentations around USA (5th November)

A wedding and an engagement

Relationships are often an issue of great interest to people with Down syndrome and to their families - as they are for anyone. While we know that there are many more long-term partnerships being quietly lived than are publicised, those that draw media attention are becoming more frequent.

Australian Jewish News published an interview with Ben and Debbie Katz who married in Sydney last month, and have kindly given permission for us to post the article here.

And a NZ couple, Tim Fairhall and Rebecca Everard who have announced their engagement were interviewed by their local Auckland paper.

The photos in both articles are a delight.

Australian Disability Enterprises

While the website for Australian Disability Enterprises is primarily aimed at businesses looking for contractors services and products, it includes a searchable database that could also be useful for people with disabilities seeking work in an ADE, with locations and the types of work undertaken. Australian Disability Enterprise is a relatively new term, describing

....... commercial businesses that provide employment opportunities for people with disability. Previously called Business Services, the new name brings together all Australian Disability Enterprises under a unified national brand.

Australian Disability Enterprises enable people with disability to engage in a wide variety of work tasks such as packaging, assembly, production, recycling, screen printing, plant nursery, garden maintenance and landscaping, cleaning services, laundry services and food services.

Swedish ad campaign

This advertising campaign from Sweden uses mini TV "soap" episodes to advertise products and to challenge stereotypes:

Swedish supermarket chain, ICA "..... decided to promote tolerance by shaking up peoples mindset about people with (Down) syndrome. The background for these films is the project "we can do more" which has a goal to employ 1000 disabled people in the ICA stores around the country.

They hired actor Mats Melin, who has Down syndrome, to play "Jerry the trainee" in a series of ads.

Fashion lovers with learning disabilities

The (UK) Sunday Times Style magazine recently featured a fashion "shoot" prepared by three stylists who have learning disabilities (the UK term for what in Australia we refer to as intellectual disabilities) - two of them people with Down syndrome. The stylists themselves are very stylish indeed. The accompanying article talks about some very grown up ideas too.

Actor with Down syndrome to star Glee, episode 9

An episode of the US series Glee is coming up (Channel 10, Thursday 19th November, 7.30 pm), that includes a storyline about a young woman with Down syndrome, played by Lauren Potter. You'll also be able to catch it online after the air-date, here.

Here is an interview with Lauren Potter, who also had a role in the movie Mr Blue Sky. Lauren's IMDb page is here. A second character with Down syndrome is played by Robin Trocki.

The Glee episode, "Wheels" was broadcast last week in the US, and comments we've seen from families who saw it have been positive. Reviews have been mixed - you can track some of them via Patricia Bauer's blog. This review from the Washington Post concentrates on the debate about whether an actor who actually uses a wheelchair should play a character who does, and comments briefly on the actors with DS

We've also heard from the US that Lauren's character will make another appearance in a few weeks.

Check your TV program to confirm the date - sometimes these things change at short notice (there was some grumbling about last week's episode being a repeat, when it is still only Season 1)!

New blog: Purple and Orange

Robbi Williams is one Australia's leading advocates for self-directed funding for people with disabilities. Purple and Orange is a new blog he has started to advocate for, provide information and opinions about the implementation of self-directed funding in Australia, and some of the other very big issues unresolved for people with disbilities.

Guide to gifts for children with special needs

The Gift Guide featured in the November issue of the free magazine Sydney's Child, includes several pages of gifts recommended for children with special needs, reviewed by an occupational therapist and a speech therapist.

Just in time for Christmas!

International Day of People with Disability: 3rd December. 2009

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

The Don’t DIS my ABILITY ambassadors are chosen each year from the arts, sports and business fields. Throughout the campaign these ambassadors will attend a variety of events across NSW to promote the key messages of the campaign. In representing the campaign they help in changing misconceptions surrounding disability by creating an environment that encourages participation in careers.

2009 Ambassadors have been announced for NSW, on the official Don't DIS my ABILITY website.

Chooks vs the disabled - hot tempers over access to parkland

The Daily Telegraph
November 13, 2009

Chooks are being pitted against the disabled in a community stoush for the moral high ground.

The grab for land has two social justice movements - being green versus helping the less fortunate - coming to blows.

Two community groups, Unite the Park and Local Living, are lobbying for the use of three dilapidated houses - one fighting for disability homes and the other for a community garden, trees, an orchard and chook pen in Sydney's affluent inner-west.

The 3000sq m block is owned by the Department of Planning and is expected to be handed to Leichhardt Council to be turned into parkland.

A group of parents who support more housing in the area, Local Living, has urged the council to convert it into supported housing.

Unite the Park want an exclusive gated garden. Read the whole article here.

New from DownsEd: research and conference DVDs

Two reports on very significant, current research at Down Syndrome Education International have been released this week:

A long term project on patterns in early development is reported here, and a successful start to reading and language intervention study is reported here.

The recent conferences held by DownsEd USA will be available on DVD, with a discount offered on orders placed and paid before the end of the year - click here for details.

To keep up with the latest news from DownsEd, you can subscribe to the news blog here.

Library Thursdays: At the End of the Day: Lessons Learned in Inclusive Education

At the End of the Day: Lessons learned in Inclusive Education by Marquita Grenot-Scheyer, Mary Fisher, Debbie Staub (Paul H. Brookes, 2001).

This book explores inclusion via eight case studies. Two of the case studies involve children with Down syndrome but all of them are useful in seeing what is needed to make inclusion work for all children. There is plenty of cited research as to the benefits of inclusion. There is also a great emphasis on building social relationships--the importance of friendship, as well as how to increase the chances of real friendships.

One of the authors, Debbie Staub is also the author of Delicate Threads: Friendships between Children with and without Special Needs in Inclusive Settings, (Woodbine House, 1998) which is available in our library.

Interview with Marquita Grenot-Scheyer

Best Buddies Australia is a program to promote inclusion for people with intellectual disabilities through one on one friendships.

If you'd like to borrow At the End of the Day... or Delicate Threads or anything else from the library, please email us.

Mental Wellness in Adults with Down Syndrome by Dennis McGuire and Brian Chicoine (Woodbine House, 2006) has been translated into Spanish.

The translation is freely available in .PDF at here from the website of Fundacion Iberoamericana Down21

The UP! Club is now on Facebook!

Search UP! Club if you are on Facebook and wish to become friends! See what they are up to, what events are coming up and get in contact with other siblings and volunteers! (Make sure when you search, you use capitals and exclamation mark where needed).

more responses on Kingsdene and long-term support published today

Letters to the Editor, Sydney Morning Herald, today:

Greatest disability is in the funding
How is it that the Anglican diocese with all those churches, all their affluent congregations, all their aged-care facilities and all those rich private schools with their swimming pools, science blocks, ovals and cricket pavilions cannot fund part-time residential care for a handful of children at Kingsdene (Letters, November 6)?

Some community.
Jane Salmon
Lindfield

Parents of children with disabilities lose access to Kingsdene, the state's only specialised boarding school, because governments are prepared to resource only options that keep children at home. Around the corner at the King's School, government funds and parents' fees keep children at boarding school and no one says they should be at home.

It is hard to avoid the conclusion that governments prefer to save money and collect votes than provide genuine support for people with disabilities. Perhaps the King's School could consider putting government to shame by throwing the school a lifeline.
Bronwen Elliott
Ashfield

Some bloke pays $23 million for a family house and Kingsdene cannot find enough funds to stay open (''Murdoch forks out $23m to head for the hills'', November 6). Something is warped in our society.
Trevor Smith
Culburra Beach

Andrew Pesce (Letters, November 6) supports a national disability insurance scheme. Unfortunately, the Federal Government has different priorities. What we really need, it says, are 12 new submarines by 2025.

Estimates of the cost of the Future Submarine Program range from $20 billion to $36 billion, even without likely blow-outs. Defence of the realm being what it is, the Government has no intention of telling us why this particular procurement is so essential. Might it be the solution to the boat people problem?

Perhaps the Collins class clunkers that will be replaced can be used as demountable classrooms as part of the education revolution.
Greg Thomas
Annandale

A proposal is before Leichhardt Council to renovate three unoccupied houses in Lilyfield for people with an intellectual disability. At a committee meeting this week, one councillor said ''this seems a lot of money for such a small benefit''. It seemed lost on her that families such as ours have saved the public purse millions of dollars by caring for our children at home (in our case for 32 years).

Luckily, others on the council have more enlightened positions.

But if a young, intelligent, well-informed local government representative can still hold such views, families such as ours who have been hoping the ethical compass is finally turning slightly in our direction might have a lot longer to wait.

The problem is, we can't; our daughter will outlive us by many years.
Peter Rix
Annandale

Response to Kinsdene closure

Yesterday's editorial in the Sydney Morning Herald says, in response to Anglicare's decision to close Kingsdene School (this post links to the first story to appear on Monday this week), that "fundamental reform of the entire disability support system is needed.

The news and editorials throughout the week have provoked several letters, that you can read here (Wednesday) and here (today), all of them arguing for increased funding for Kingsdene in particular, for services in general, and for implementation of a National Disability Insurance Scheme. Dr Andrew Pesce's letter reiterates the full support of the Australian Medical Association, of which he is federal President.

Vintage by the Sea

Shabby Chic Market

9 am - 4 pm, Sunday

15th November 2009

Cronulla Masonic Hall,

43 The Kingsway

CRONULLA

Entry by donation

(Proceeds to Down Syndrome NSW)

Browse and buy from our stalls ..... furniture, vintage fashion, collectibles, garden and homewares

Enquiries: Robyn 0425 243 520

Library Thursdays: Other Australian Websites and Newsletters

In addition to the books, videos and kits available in the library, we also have newsletters from many organisations including Down syndrome associations throughout Australia and the world. Articles from these are referred to from time to time in our newsletter but many of these are available from the associations' websites as well as other interesting things.

Down Syndrome Victoria's journal, Voice . The current issue, Spring 2009, includes articles on: Teaching new skills and building competence, Healthy lives and informed choices. You can have both! by Joan Guthrie Medlen, "Says who?: Life stories and people with Down syndrome by Amie O'Shea, Story books by Kirsten Deane (about creating books for your child), Tim's story by Kate Calwell.

Some of the past issue's articles are available on their website from the Journal menu item (this will show up in the menu on the left after clicking Down Syndrome Victoria from that menu and then Publications even though nothing will appear on the Publications page. (I think the site is still developing).)

Down Syndrome Western Australia has recently launched their new website. Their newsletter, The Diary is available online. The site has other interesting informtion and there is also a link to the developmental disability library in WA--ACTIV.

Down Syndrome Association Queensland's newsletter, DSAQ Digest is not available on their website but the latest issue in our library has articles on; Health checks, World Down Syndrome Day 2009, Queensland Companion Card, Siblings, and Vision & Glasses.

ACT Down Syndrome Association's newsletter is also not online, but their website is up to date.

Down Syndrome Tasmania's newsletter of Winter 2009 had articles about its 25th birthday, Tim's Story, and Two choices: I hope I made the right one- an article about putting inclusion above winning in a baseball game.

Down Syndrome Society of South Australia produce their own informational books and these can be purchased from their site.

Foundation 21 (South Australia) also has a few pictures and news items from their events.

Down Syndrome Association of the Northern Territory do not have a website, but they do have a newsletter. In their September 2009 edition, articles include a Report from the World Down Syndrome Congress, a History of Down Syndrome and tips on Introducing the computer to a child or student.

We have links to all the Australian associations (their location, website and contact details) on our website.

Threatened closure of school highlights system gaps ... again

There have been numerous stories, and an official inquiry into the provision of adequate care and support for people with severe disabilities and their families, and another threat is reported in the Sydney Morning Herald this morning:

Harrowing choice put a loving mother to the test
Louise Hall, Sydney Morning Herald, November 3, 2009

Exhausted and depressed after devoting her life to caring for her severely disabled son Niall, Anita Cain took him to a respite centre - and left him there.
Abandoning him to the state's welfare system 3½ years ago was the only way the single mother could get the support she needed.

A rare genetic condition means Niall is deaf, blind in one eye and developmentally delayed, but Ms Cain's pleas for a permanent placement in supported accommodation were rejected until she relinquished day-to-day responsibility for him to the Department of Community Services.

''I only got one weekend every two months respite … all I wanted was more regular, longer breaks, but they wouldn't find anywhere for Niall to go unless I officially abandoned him,'' she said.

In NSW 32 children were given up to the Department of Community Services in the two years to June and this could worsen, with the state's only boarding school for severely disabled children facing closure.

Click here to read the full report.

While we are aware of at least one other school in NSW that does offer boarding facilities for children with disabilities, and that it is highly valued by the families of its students, the threatened closure of Kingsdene might well put pressure on the capacity of any other similar school, as well as on the families of Kingsdene students.

Scrapheap Adventure 2010 registrations now open

You can register now for the 2010 Scrapheap Adventure via the link here.


And if the Scrapheap Adventure concept has captured your interest, you can follow this discussion thread for some inside information.

New addition to the Blogroll

The Blogroll is the list of blogs that we check into regularly - scroll down the right hand column of this page and you'll come to it.

We've just added Welcome to Illinois, views from Matt, one of many dads who have chosen to blog about his thoughts and experiences arising from being the father of a child with Down syndrome, and one without.

Scotland on Sunday: opinion on UK research and media

This article from a Scottish Sunday paper was also prompted by the media response to the UK statistics released last week.

The upside of Down's
Dani Garavelli, Scotland on Sunday, 01 November 2009

Almost every day, I pass a little boy with Down's syndrome coming home from school.

As he bounces along the road, his face beaming, he is so cute I want to pick him up and take him home. At my local church, too, there are special masses in which adults with DS play a leading role. They are among the most moving services I've been to, perhaps because those involved throw themselves so unreservedly and so unselfconsciously into proceedings.

Of course, I realise these brief encounters give me no real insight into what it would be like to raise a child born with this condition. Moreover, harping on about how "loving" and "unaffected" people with DS are, is borderline offensive, suggesting as it does that they are a homogeneous mass rather than individuals with distinctive personalities like everyone else. Click here to read the whole article.

(Ed - I had to read the third last paragraph a couple of times to be sure what it said. A quick Google search showed that Claire Rayner's patronage of the Down's Syndrome Association (in London) was immediately terminated when she made the remarks referred to.)

From disbelief at Down diagnosis to joy and delight

Prompted by the media response to UK research published last week, the Sun-Herald investigated local statistics, and published this report today. It was accompanied by a delightful photoraph of Ian and Jo Smith with their children:

From disbelief at Down diagnosis to joy and delight
by Jessica Mahar, Sun-Herald (Sydney) 01/11/2009

Ian and Jo Smith knew their third child would have Down syndrome from the time Ms Smith was 15 weeks pregnant. A 12-week screening showed a one-in-six risk but the couple wanted to be sure.

When the result came back positive, Ms Smith, 43, could hardly believe the results. "I thought I was going to be sick, I had no idea how I was going to cope with it and I probably cried for three days and then I didn't cry any more. Then we just started our research."

Their daughter, Catherine Rose, was born three weeks ago.

"I went through that, feeling guilty about the impact it would have on my other children and who would look after Cate when we've gone," said Ms Smith, from Sydney's eastern suburbs.

"My five-year-old saw me crying a lot. He heard me saying the words Down syndrome so I told him his sister has got something called Down syndrome and it means she might take longer to do things and she might need more help from us."

The number of diagnoses of Down syndrome in NSW has increased as women have delayed motherhood.

But the number of babies born with the syndrome has dropped as prenatal screening has improved and more people have chosen to terminate their pregnancies.

In 1995, there were 140 diagnoses of Down syndrome and, of that number, 113 ( 81 per cent ) were born. The rest were either stillbirths, neonatal deaths or terminated.

Figures from 2005 reveal 211 cases, with 73 babies born (a 35 per cent birth rate).

A 20-year-old woman has a one in 1411 chance of having a baby born with Down syndrome. Ten years later, at 30, the risk rises to one in 959. At 40 it is one in 84 and at 45 it's one in 32.

Down Syndrome NSW information and services director Jill O'Connor said she was worried people didn't have enough time or information when they were told the news.

"We're not convinced that people are getting all the information that they might like to have when they are making these decisions," she said.

"We want them to know what Down syndrome is and we'd also like to see people not being made to make quick decisions."

Ms O'Connor has a 24-year-old son with the condition, who was diagnosed at birth. "Nearly every child who is diagnosed with Down syndrome is going to be a wanted baby," she said. "People are still being given very negative information and very often the assumption of health professionals and family professionals is if you have a diagnosis you will terminate."

Andrew McLennan from the Royal Australian and New Zealand College of Obstetricians and Gynaecologists said screening had improved but it needed to be offered to all.

"This is all about choice," he said. "It's certainly not about running a program seeking to increase the terminations for abnormalities."


Genetics counsellor Mona Saleh, who works for the Centre for Genetics Education, said the statistics showed a change of demographics in prenatal testing.

"There are more people being screened now than 10 to 15 years ago," she said. "It was only older mothers who were being offered testing."

The Smiths say they would not have it any other way.

"We would not swap this journey," Ms Smith said. "I wouldn't even swap the Down syndrome because our family has just now come together.

"I don't even see the Down syndrome when I look at her. She's the joy of my life."

This information was presented in a table, highlighting the increased diagnoses and termination rate:

The 1995 birth rate of foetuses diagnosed with Down syndrome.
 140 cases of Down syndrome were diagnosed.
 113 babies were born with the disorder.
 27 terminated, stillborn or neonatal death (vast majority terminated)

The 2005 birth rate of foetuses diagnosed with Down syndrome.
 211 cases of Down syndrome were diagnosed.
 73 babies were born with the disorder.
 138 terminated, stillborn or neonatal death (vast majority terminated).
Source: NSW Mothers and Babies reports