"Struggle to Care" now online

The article "The Struggle to Care" from the Weekend Australian Magazine 28th -29th March has now been posted to The Australian's website, here.

Original post.

New Directions for Respite Services: new DADHC discussion paper

The Respite Directorate of the NSW Dept of Ageing, Disability and Home Care has released:

New Directions for Disability Respite Services in NSW: A discussion paper inviting feedback.

From the Introduction:

The New Directions for Disability Respite Services in NSW discussion paper has been developed to assist in the reform and expansion of disability respite services1. It will guide the way future disability respite services are delivered, how people access those services, the types of services provided, the settings in which they are delivered and the development of new respite services across the sector.

Stronger Together: A new direction for disability services in NSW: 2006-2016 commits the NSW Government to expanding existing respite services and building a more flexible and responsive disability respite service system. Also driving the expansion of respite services for people with a disability and their carers/families is the NSW Carers Action Plan 2007 – 2012.

In order to consider different approaches and better ways to deliver respite services, the NSW Department of Ageing, Disability and Home Care (DADHC) has been consulting with a wide range of stakeholders and reviewing national and international research along with key research conducted locally by Interchange NSW and Carers NSW.

This paper broadly outlines the direction we intend to take to reform and expand respite services in NSW. We are now seeking your input to ensure we get the mix and balance of disability respite services right for the people who use them. With your assistance we are hoping to build a respite service system that is more responsive to the individual needs of people with a disability and their carers and families. The strategy will guide future respite service system reform, commencing in 2009/10.

DADHC invites comment and feedback from people with a disability, their carers and families, advocates and service providers. We have included sets of questions as a guide when considering your comments and feedback. The questions are a guide only and all input is very welcome.

Comments are invited to be submitted by Friday 26th June 2009.

Down Syndrome NSW will be making a response, and individuals are encouraged to as well.

"Developing Personalised and Creative Community Living Options": seminar

The Centre for Developmental Disability Studies (University of Sydney) is pleased to sponsor a visit by Eddie Bartnik, one of Australian's leading initiators of contemporary ways to help meet the dreams of people with a disability.

"Developing Personalised and Creative Community Living Options" is a half day seminar, presented by

Eddie Bartnik

(Disability Services Commission, WA )

Monday 6th April 2009
9.00 am – 1.00 pm

Charles Blunt Conference Room

Royal Rehabilitation Centre Sydney

59 Charles Street

RYDE

Registrations close 31st March

Further information and registration: Margaret on 8878 0500; cdds@med.usyd.edu.au

Disabled workers at risk of losing jobs in Australia

We know that the economic crisis is biting deep throughout our communities. The Sun-Herald today reports on its effects in supported businesses employing workers with disabilities, and potential effects on families:

Ozanam Industries, a subsidiary of the St Vincent de Paul Society, employs more than 100 people with intellectual disabilities. Its business development manager, Rod Silber, said business had fallen 25 per cent in the past year. He urged governments in Australia to follow the lead of the United States, which employs more than 40,000 disabled workers to carry out contracts worth $2.3 billion under the Ability One scheme.

It should be compulsory for government departments to seek a quote from an agency with disabled employees, he said. "How can I expect the Commonwealth Bank to give me work if the damn government doesn't do it?"

Mr (Ian) Terry from the Phoenix Society (in SA) said if people with disabilities lost their jobs it would have a "multiplier effect" on parents and other carers.

Click here for the full report, by Caroline Marcus, and Alan Hollingworth's photo.

NZ World Down Syndrome Day Awards

New Zealanders have adopted the tea party as a means of marking World Down Syndrome Day in local communities. The Manawatu Standard reports, with a photo of the National Achievement Awards presented in Palmerston North:

National awards were presented to figure skater Ben Southern, author Rosemary Mountfort and swimmer Fiona Strong at Caccia Birch.

Ms Mountfort, from Napier, wrote a book about her life, My Life as I Remember It.
Mr Southern, from Christchurch, was selected to represent New Zealand for the 2009 Special Olympics World Winter Games.

Ms Strong, from South Auckland, won three gold medals at a Special Olympics regional competition in October.

Associate Minister of Disability Issues Tariana Turia said people with Down Syndrome needed to be seen as who they were - authors, swimming champions and neighbours.

Click here for the report and photo.

"The Struggle for Care": Weekend Australian Magazine

This week's edition of the Weekend Australian Magazine (28 - 29th March2009) includes a major feature by Sue Corrigan, "The Struggle for Care", on the critical shortage of long term supported accommodation for people with disabilities in Australia. A comparison of systems in here and in the UK (Sue Corrigan has personal experience of both), leads to a discussion of the proposed National Disability Insurance Scheme, and the solutions it has potential to offer.

While many people with Down syndrome would not live with the severe physical disabilities that are a focus of the article (although some do), their need for long term term support and security is just as real, as is their families' and carers' need for respite, reassurance of their safety, and everyone's right to a life of their own.

Recommended reading, very sobering, but it does offer a lot more than a litany of complaint. The story does not "(grind) to a mournful hope," as Sue Corrigan acknowledges it once would have, as she introduces the campaign for the National Disability Insurance Scheme.

The article does not appear to be available online (yet), but it is well worth reading and will be in newsagents today and tomorrow.

Edit 31/03/2009: The article has now been posted to The Australian's website, here

Who wants to know about Down syndrome?

A Learning Links workshop, for families and professionals.

This is a practical yet thought provoking workshop which aims to challenge perceptions of Down syndrome. It brings the benefit of understanding and experience from both a family and professional perspective. Ways to support families of children who have Down syndrome will be discussed.

Presenters will also outline the impact of Down syndrome on children’s learning. Strategies for home and early childhood settings which assist these children to reach their potential in all developmental areas will be explored.

Presenters: Siobhan Beavis is an Early Childhood Teacher who has worked in a variety of children’s settings. Currently, the director of an inclusive community-based preschool, she is also completing post-graduated studies in Down syndrome. Siobhan’s interest in Down syndrome was prompted 4 years ago by the birth of her son Joel, who has Down syndrome.

Frances Schembri has over twenty years experience working with families who have children with movement difficulties including children with Down syndrome. Frances works with families to help them identify goals for their children. She implements programs in both home and childcare settings.

Date: Thursday April 2, 2009
Time: 6.00pm to 8.30pm
Venue: Learning Links, 12-14 Pindari Road, Peakhurst
Cost: $60 for Learning Links’ members; $65 for non-members of Learning Links

Enquiries and bookings: Phone Dana on 8525 8222. Payment can be made on the phone by Mastercard, Visa and Bankcard.

Film-making opportunity, with Accessible Arts and Genevieve Clay

Accessible Arts and filmmaker Genevieve Clay are looking for people who identify as having adisability to assist & be mentored on a range of roles for Genevieve's next short film, Francis &Annie.

Genevieve recently directed the short film Be My Brother which took first place at this years Tropfest & featured Gerard O’Dwyer who won Best Actor for his role in the film.

One of the other notable successes of Be My Brother was that it involved people of all abilities behind the scenes who had been involved in Accessible Arts Western Sydney’s creative programs.

Francis & Annie has been funded through MetroScreen's Raw Nerve initiative, and explores what is perceived to be tragic. It stars Tracie Sammut who is a member of Powerhouse Youth Theatre’s Mixed Abilities Ensemble and who has also appeared in the feature film, Clubland and TV series’ All Saints, GP and House Gang.

Mentors on Francis & Annie will include director/writer/actor Craig Anderson (Double the Fist, Life in a Datsun, Review with Myles Barlow), producer Eleanor Winkler (Be My Brother, Motherfish) & cinematographer Jules O’Loughlin (Kokoda & September).

To be considered being involved in the film shoot you need to be available on Saturday May 23rd & Sunday May 24th and be able to get to North Sydney.

To express your interest please contact Alison Richardson on 9251 6499 (ext 5) or arichardson@aarts.net.au

NIDA: Drama for Young People with Intellectual Disabilities

Weekly classes
NIDA offers weekly drama classes for young people with intellectual disabilities.
Term 2 will advance physical theatre skills as students devise scenes. Discover how to convey meaning to an audience using movement as the key technique for telling a story. Each group will be allocated a bag of props, images, words and music to use as the stimulus to inspire their work.

When: Term 2 starts from 17 May to 28 June and runs on Sundays from 12.00pm to 1.30pm.

Where: National Institute of Dramatic Art, 215 Anzac Parade, Kensington, NSW 2033

Who: For young people 13-20 years.

Cost: $195 per term ($180 for payment before 13 April 2009)

• Click here for online information and booking

Weekend event - July 2009
Music Theatre for Young People with Intellectual Disabilities- a weekend of music theatre for young people with intellectual disabilities.

Build and develop confidence and stage presence and pratice telling a story through song.

When: Saturday to Sunday 10.00am – 4.00pm, 25 to 26 July 2009

Where: National Institute of Dramatic Art, 215 Anzac Parade, Kensington, NSW 2033

Who: For young people 13-20 years.

Cost: enquiries to NIDA

For both programs:

Contact: phone NIDA Open Program on 02 9697 7626

Access: Accessible venue & toilets

More information: www.nida.edu.au (we found entering "disabilities" in the search box the easiest way to locate the relevant information)

Source: Accessible Arts Newsletter, March 2009 where you will also find a news item about Genevieve Clay and Gerard O'Dwyer and their Tropfest awards, and a short profile of Gerard, with photos.

Music Pathways for People with a Disability in NSW

Accessible Arts NSW is conducting an information-gathering exercise on existing provision of music pathways for people with a disability in NSW. They are developing a picture of music activity for people with a disability by the end of April 2009.

Towards the end of June 2009, interested stakeholders will be invited to a creative forum that they hope will lead toward the development of a new statewide Accessible Music Program. If you would like to contribute to this initiative, the areas they are looking into are:

1. Finding out what pathways currently exist for people with a disability to pursue their creativity through music in NSW - including both formal and informal training or professional development

2. Talking to NSW musicians with a disability to identify their current practice and how they got there

3. Identifying potential resources (and resource limitations) - human, physical, technological, virtual etc - available to facilitate music development for people with a disability in NSW

For more information please contact Becky Chapman, Arts Development Officer, Accessible Arts on Ph: 02 9251 6499 ext 4 MON, WED only. Visit the website at www.aarts.net.au

Source: National Disability Services Info-e, 26th March 2009

Library Thursdays: Fasten Your Seatbelt

Fasten Your Seatbelt: a crash course on Down syndrome for brothers and sisters by Brian G. Skotko and Susan P. Levine, a new book in our library, is written for teenagers who have a sibling with Down syndrome. It is a wide ranging book that tells exactly what Down syndrome is and answers questions asked at numerous workshops conducted by the authors. The questions range from what to do about people who stare at their siblings, how to manage embarrassing behaviour, how to understand feelings about their siblings with Down syndrome, how to talk to their parents about their siblings as well as what can be expected for the future.

The book can be used to answer specific questions or read cover to cover (190 pages). Some is very basic information that many siblings may already know, but it is laid out in a clear way and many siblings may find it easier to read this than ask parents or seek out the information elsewhere.

In the behaviour section as in other sections, it seemed that Skotko and Levine were sometimes giving a course in child management that may expect too much of siblings. But, perhaps siblings of people with Down syndrome do learn these things early on to their benefit. The authors do repeatedly advise the readers to talk to their parents about many of these issues and later discuss who to talk to if they feel too burdened with responsibility.

I think the book will be very useful for older siblings (in some instances, the book would be fine for children as young as 10--especially if used in small excerpts). I most liked the chapters on behaviours, uncomfortable situations and feelings. Hopefully siblings that aren't big readers will go straight to these sections. I would have liked more resources in the resource sections and even some references to the research mentioned in the early chapters. Some of the information (mainly in the education section) is US oriented but the majority of the book would be very relevant to Australian siblings of people with Down syndrome. It is nice to have a comprehensive book for siblings that is specific to Down syndrome.

I highly recommend the book to siblings who want their questions answered and to parents and others who want a description of Down syndrome and how it affects family life.

Email us if you'd like to borrow a copy.

Related Links:

Interview with authors at Patricia Bauer's blog.

Interview with Brian Skotko and some siblings on FOX news

Brian Skotko's website

Jennifer Graf Groneberg's blog entry on sibling relationships

Siblings booklets online from Down's Syndrome Scotland:

Siblings: Growing up with your brother or sister with Down's syndrome

Your brother or sister with Down's syndrome

And for parents: Siblings are special too

Other books on siblings of people with special needs available in the library:

Oh, Brother: Growing up with a special needs sibling by Natalie Hale

Views from our Shoes: Growing up with a brother or sister with special needs, edited by Donald Meyer

Who Asked Me: a journal of discovery and sharing by and for siblings of people with developmental disabilities, edited by Adele L. Bergstrom in cooperation with Fraser

Siblings: Brothers and sisters of children with special needs by Kate Strohm

National Disability Strategy: NCID submission

The National Council on Intellectual Disability (NCID) has made its submission to the National Disability Strategy available here to download.

The Preamble reads:

The Essential Questions
In 2008, what are the essential questions that the National Disability Strategy must address?

 Do people with intellectual disability have a place in the Australian
community?

 Do we value people with intellectual disability as contributing members of
their community, or do we see them as ‘burdens on society’?

 Do people with intellectual disability have rights as citizens of Australia, or
are they objects of pity – the recipients of charity and hence to be grateful
for what they get?

In short, what is our perception or expectation of people with disability?
It is acknowledged that perception and expectation are driven by many factors, eg, historical understanding and attitudes of those in authority, and because of this, it is vitally important that those in political power demonstrate leadership.
It is also important that the answers to the above questions are not fine words, but are descriptions of what must happen.

These are not theoretical or ideological questions, they are practical questions that havepractical consequences for people with intellectual disability.

This is not an issue about people with disability. It is an issue about relationships; the relationships that the broader Australian community (represented by its parliamentarians) wants to have with Australians with disability.

And the Executive Summary reads:

The need to develop the National Disability Strategy is evidence that Objects of the Disability Services Act 1986 have not been met: the Act has failed.

This submission considers the needs of People with Intellectual Disability, and makes recommendations for Government to act on them, at all stages of life – through pre-birth, early childhood, school and further education and employment – and in all aspects of life.

Central to the submission are the Articles of the UN Convention on the Rights of Persons with Disabilities, which oblige all States that are Parties to the Convention to actively promote the underlying principles to the Convention.
Those principles include the rights of all persons to make free choices, to be included within mainstream society, and to have their place in society valued.

The 48 page submission examines its priorities under the headings:

• Right to Life
• Early Childhood
• Education
• Employment
• Supported Living
• Health
• Immigration

• Australian Government on the National Disability Strategy


• People With Disability Australia's Position Statement
  

T 4 321 first photos

The photos are starting to filter in from World Down Syndrome Day events across NSW. About 40 people attended Helen's T 4321 in the Blue Mountains on Saturday, and had a good time hanging out, playing, enjoying morning tea .... and buying honey!

Strength from a song ....

A lovely short article by British mother, Heidi Reid, was published on World Down Syndrome Day (yesterday) in the Family Life section of The Guardian. Heidi talks about her expectations of the births of her children, and how different her experience actually was when her second daughter was born with Down syndrome, and some health problems. She unexpectedly drew strength from a song that was popular at the time, concluding:

..... During a rare moment of respite, I found myself sitting alone in my car in the hospital car park, when this song came on the radio. I had heard it before and thought little of it, but suddenly the words bore enough significance to knock me out of my dazed cocoon of grief and send me racing to my daughter's side, desperate to hold, love, feed and fight for her.

Six years on, when I hear that song, I am always reminded of a moment when I stopped thinking about what her disability meant for me, and started to think about what I wouldn't allow it to mean for her.

Click on The Guardian's website here to read the whole piece, and to see which song it was. Scroll down to the second article, Playlist Out of my cocoon of grief.

Down Syndrome Global Education Fund launched

PORTSMOUTH, UK - On World Down Syndrome Day 2009, Down Syndrome Education International has launched a new Global Education Fund to improve care and education for young people with Down syndrome wherever they live. The Fund will directly support advice, information and services for young people with Down syndrome and their families in low and middle income countries.
Almost all of the 200,000 children who will be born with Down syndrome in high income countries during the next decade will survive to adulthood. They will receive knowledgeable medical care, additional educational support and live in societies that have become, and continue to become, more welcoming and inclusive. These children can now look forward to richer and more fulfilling lives lasting in excess of 60 years.

However, without action now, half of the 2 million babies who will be born in low and middle income countries during the next decade will not live for even a few years. For the luckier ones who survive, abuse, neglect and exclusion are too common. Many health and educations systems are ill-prepared to provide knowledgeable care and support for young people with Down syndrome.
Commenting on the new initiative, Frank Buckley, Chief Executive of Down Syndrome Education International said, "This is unjust. Rich countries know how to help people with Down syndrome live increasingly fulfilled lives.

Knowledgeable, modern medical care has increased life expectancy from 12 years to over 60 years in little over 5 decades. Modern educational techniques are helping young people with Down syndrome gain better speech, language, reading and maths skills. However, these improvements are not yet reaching the vast majority of children who have Down syndrome who are born in developing countries. The time has come to ensure all people with Down syndrome benefit from effective care and support."

Down Syndrome Education International has already begun to work with families, support groups and NGOs around the world to identify practical ways in which we can help to improve the care given to young people who have Down syndrome and to deliver outreach services. The new fund will support work to reach out to families, support groups, associations, NGOs and governmental organisations on the ground, providing hands-on advice, training and translated resources in low and middle income countries.

What you can do
If every person who reads this message today gives £50 ($75 or €60), then we would quickly reach this goal and be able to begin transforming the lives of thousands of children with Down syndrome around the world within weeks.

To mark World Down Syndrome Day, you could also forward this plea to 21 friends and ask them to also support this cause and help to make World Down Syndrome Day 2009 a day to remember for future generations of people with Down syndrome.

World Down Syndrome Day only comes around once every year. By giving the equivalent of less than £1.00 ($1.50 or €1.20) per week you can help make a difference for people with Down syndrome wherever they live.

How to give
You can donate to the Global Education Fund through Down Syndrome Education International, a UK registered charity, by pledging your donation securely online:
Visit http://lnktrack.co.uk/1679991/540592333/53780933/839204/64397/0/t2.aspx and select "Global Education Fund" as the specified purpose of your donation.

You can also donate to the Global Education Fund through Down Syndrome Education USA, a 501(c)(3) US nonprofit:
Visit http://lnktrack.co.uk/1679992/540592333/53780933/839204/64397/0/t2.aspx and select "Global Education Fund" as the specified purpose of your donation.

For other ways to donate or to support this initiative, go to the Down Syndrome Education International web page on the Global Education Fund.

Obama "joke" about Special Olympics is just not funny

It's been on TV news and in newspapers all around the world, so you probably know that US President Obama made a flippant "aside" about Special Olympics on a national TV show a couple of days ago. It wasn't funny (although the TV audience laughed), and there has been a great deal of response. The President has apologised to Special Olympics International President, Tim Shriver - and SO has sensibly taken the opportunity as "teachable" moment for the community at large.

If you are interested in following the debate that has ensued, here is a selection of starting points:

Special Olympics

Disability News (Patricia E Bauer)

Blog commentaries:

Planet of the Blind

Bad Cripple

Let's celebrate!

We wish you a joyful World Down Syndrome Day. Tell the person in your life who has Down syndrome how much they mean to you.

Events around NSW are listed here.

Here is a great story from the Maitland Mercury, about the welcome response of a large bureaucracy to a family and community's persistent advocacy for real child's very real needs to be met. This post is the story of the difficult process of getting to this point for Sarah's family and supporters in her local community and school. As her mother Sue says, Sarah's face says it all, in Cathy Bowen's glorious photo:

Sarah stays

Mal Kearney, Maitland Mercury, 19/03/2009

Sarah Coutts will stay at her beloved Martins Creek School – at least until the end of 2010.

Her mother, Sue Coutts, has fought a dogged battle for at least two years with the Department of Education, which wanted to move the 12-year-old with Down syndrome to a high school in Maitland or Dungog.

But the department has relented and this week sent a letter to Ms Coutts confirming her place at the school.

A frail Sarah did a victory dance when she received the news. Hunter-based MLC Robyn Parker, who has advised and represented Ms Coutts and Sarah for several years, said credit for the decision to allow Sarah to stay went to the Maitland Mercury and to people who had written letters to the editor and to authorities to support Sarah’s cause.

“Thanks must go to the Mercury and the community for the letters and support,” Ms Parker said. “This is a commonsense decision at last.”

Pleas to allow Sarah to stay at the school until she was 16 went to the education minister Verity Firth and Premier Nathan Rees, but they had gone unheeded until this week.

Sarah’s circumstance for 2011 and beyond will be reviewed next year but, for now, she will continue to go to school with 8-year-old sister Connie at the small school a few minutes away from her home.

Sarah has heart and lung conditions and a fragile immune system that makes her vulnerable to illness and infection.

There was medical opinion that travel to a high school would have put Sarah’s health at risk.

“Connie is very good with her and can help her here at school,” Ms Coutts said outside the school yesterday.

“I live five minutes away and can come and get her if she is tired or ill.

“This wouldn’t be possible if she was in a high school.”

Asked if she was happy with the decision to let her stay, Sarah said: “Yes. (I can) stay with friends.”

Low cost PC's for all Centrelink Concession Card Holders

Posted on the IDEAS blog this week:

A low cost PC is now within reach of Centrelink customers through a partnership between Centrelink and WorkVentures. Centrelink customers can now purchase their own professionally refurbished, internet ready, Pentium 4 PC pack which includes Windows XP Pro, Office XP and free phone technical support from just $250 plus delivery. The low cost PC offer is available to all Centrelink concession card holders.

The low cost PC offer should be suggested to current Centrelink customers, particularly those families with school-age children, older Australians and newly arrived migrants. Having access to a PC with internet access makes it easier for current Centrelink customers to do their business online with Centrelink and this should be encouraged.

People interested in purchasing a low cost PC can contact their local Centrelink office or phone WorkVentures on 1800 112 205 or visit WorkVentures

Library Thursdays: Offense Taken DVD and The Are Word

Sadly, it is not uncommon in a high school or around a group of children to hear the "R" word used. These youth generally have no idea how hurtful these casual remarks can be to people with Down syndrome or other intellectual disabilities. When the film, Tropic Thunder came out, the use of "Retard" in this film created a little awareness and prompted Will Schermerhorn to produce the beautiful film featured to the right on the blog. In the library we also have a couple other resources on this topic. One is Offense Taken, a documentary done in the US in response to the use of retard in a title of a theatre performance. It forces people to examine exactly what the use of that term means.

And of course if you haven't read Dave Hingsburger's booklet, 

The Are Word, it is certainly worth your time. It is about empowering people with intellectual disabilities to understand bullying and teasing and how to deal with it.  

Another interesting site on this topic are the various videos of a speech made by a high school student on this topic. He relates its use to racist language and as he is the brother of a girl with intellectual disabilities, it is very moving.

As always, if you would like to borrow either of these items or anything else, please email the library.

Celebrating World Down Syndrome Day : 21st March

Events to celebrate the lives of people with Down syndrome that we know and love are planned throughout NSW, on World Down Syndrome Day this Saturday, and beyond (one day is never enough). Choose the one (or more) that appeals to you, and have fun:

Fri 20th March, Wollongong Annual Black Tie Ball
Click here for details and flier
Last day for tickets - book today! Book online (click here)

Saturday 21st March, Northern Beaches
"Get Down and Get With It" Walkathon
4.8km from Dee Why RSL to Narrabeen Tramshed. 11:30am
Click here for flier and Registration Form
Contact Gabrielle, Special Olympics, (Sydney Northern) 9970 7370 or lainie47@bigpond.com

Saturday 21st March - morning tea at The Cafe, Narrabri (NSW) - just come and join us!

Sat 21st March, Inner West Sydney
"T4321" Morning Tea - Fernwood Women's Health, Haberfield
Contact 9798 8788

Tupperware for T4321
Date: Friday 27th March, 2009
Time: 10:30am-1:00pm
Venue: 3 Goodlet Street, ASHBURY NSW 2193
Please RSVP by Wednesday 25th March
There is a secure play area for children, so children are welcome
For enquiries or to RSVP please contact Nerida on 02 9716 0787 or 0488 990 326

Afternoon Tea 4 321
Date: Saturday 28th March, 2009
Time: 2:30pm-4:30pm
Venue: Concord Baptist Church,1-3 Carrington Street, North Strathfield
For further information please contact Heather Craven on 02 9743 3773

27th - 29th March, Mid North Coast (Milbrodale)"Tuff Trucks" Fundraising Challenge Click here for details

Sun 29th March, Inner West Sydney (Five Dock)
"T4321" Morning Tea - special guest Gerard O'Dwyer, Best Actor Winner, Tropfest.
All Hallows Catholic Church, 2 Halley Street, Five Dock (Hall next to the church). 11.00 am

Sun 29th March, South West Sydney (Wattle Grove)
Market Day, 9am - 4pm, Stalls, sausage sizzle, face painting, Easter show-bags, raffle, chocolate wheel and auction - lots of prizes to be won.
Wattle Grove Community Centre at Village Way, Wattle Grove

• More about T4321 & World Down Syndrome Day, 21st March 2009 - register your event, request materials or find out more - email t4321@dsansw.org.au

Freddie's blog has really taken off: his friendship book is fabulous

Just last week we introduced you to Freddie's blog, published by the UK group Mencap. There are now 4 entries, the last one a very thoughtful and practical piece on friends, with a link to a book Annabel has written about Freddie to help friends and playmates understand him and to support him so that they can all enjoy playing together. She invites you to download and copy the idea if you like it.

We've added Freddie's blog to our Blogroll (in the right hand column) to make it easier to keep up with it.

And if you have teens or nearly teens, and haven't checked in to Living with Max (also in our Blogroll) lately, Sandy Lewis's latest musings will suggest that it can be distressingly like living with any teenager ..... And of course she's right - Max is a great actor - did you see him Trial and Retribution on ABC 1 a couple of weeks ago?

Reminder and more information: Dementia and disabilities seminar

Earlier post about this important event

If you are in Queensland, you might be interested in this opportunity to hear Diana Kerr

Disabilities and dementia: a workshop for people with disabilities or dementia, carers and healthcare professionals working in dementia care

Alzheimer’s Australia NSW will hold a full-day seminar on disabilities and dementia with renowned specialist, Diana Kerr - a leading figure in the UK in the area of dementia and learning disability, and a Research Fellow at the University of Edinburgh.

A number of local experts will join Diana Kerr and make the seminar an essential day for families and professionals interested in the field.

 Dr Seeta Durvasula from the Centre for Developmental Disability Studies, University of Sydney, will speak on distinguishing a deterioration in intellectual ability from dementia

 Christine Regan from NCOSS will describe a personal journey through the acute health system

 Marti Travers and Tammy Gaylard work at the Sylvanvale Foundation and provide an update of a clinical trial involving one of their clients

 Pam Rogers will share her palliative care experiences at Sunshine Homes

Date: Monday 6 April 2009

Venue: Parramatta Leagues Club

Address: 13 -15 O'Connell St Parramatta, NSW

Time: 8.30 for a 9:00am start

Cost: $85 for health professionals, or $55 for people with disability or dementia, carers or support organisations. Registration includes lunch.

Places are limited so please book early

For further information or to register, contact us now:

email education@alznsw.asn.au or phone Education Services at Alzheimer's Australia NSW on (02) 8875 4686

Thank goodness for one care worker's willingness to report another

This disturbing incident was reported in today's Sydney Morning Herald: Care worker slept in disabled woman's bed

A (paid) carer kicked a severely disabled woman out of bed and left her to walk around a group home unattended in the middle of the night while the carer changed into her own pyjamas, climbed into the woman's bed and went to sleep.

The residential carer was discovered in the morning, tucked up under a doona, by another support worker who was to replace her on the morning shift. The government-run home, in Sydney's north, houses between four and six disabled people at a time.

The NSW Department of Disability, Ageing and Home Care conducted an external investigation into the incident, which happened late last year, after the case worker who arrived for the morning shift found the disabled woman in the kitchen of the house.

Many readers will echo Andrew Constance's judgement:

The Opposition spokesman on disability, Andrew Constance, said it was probably an isolated incident, but the worker should not be allowed to return to overnight shifts.

Click here to read the full report, by the SMH's Alexandra Smith.

Sensory processing, behaviour and communication - professional development workshops

A series of workshops for professionals.

There may be a link between children’s behaviour, their ability to process sensory information and understand their world and communicate - resulting in them displaying a range of behaviors such as big responses (tantrums) to little things; becoming overly frustrated, stressed, upset or angry; physical responses in interactions with peers and carers and / or avoidance of certain situations and activities.

Karobran Playtherapy is offering a series of 3 workshops addressing these concerns:

1. Sensory Processing
Tues 24th March (RSVP by 19th March)

2. Sensory Seeking or seeking Attention?
Tues 31st March 2009 (RSVP by 24th March)

3. Total Communication
Wed 29th April 2009 (RSVP by 22nd April)

Facilitators: Karobran Playtherapy – Eurella Community Services

Location: 2 Eurella St, Burwood

Time for each event: 6pm – 9pm

R.S.V.P and further information: 9747 4810 (Tricia or Monica) Mob: 0419 448 322 (Tricia) Email: ceurella@optusnet.com.au

All participants will receive a Certificate of Participation.

Funded by the 2007 DADHC Enhancing Capacity Grants

Trisomy 21: discovery published 50 years ago

Today, 16th March 2009, is the 50th anniversary of the publication of Lejeune, Gautier and Turpin’s historic research paper, demonstrating the presence of an extra chromosome in each of the nine children studied. In 1959 the use of the term "Down syndrome" was still some years in the future, and the science of cytogenetics was in its infancy. The actual number of chromosomes present in the typical human cell had not been known for very long.

Almost simultaneously (but just a little later), a similar study was published by Patricia Jacobs and her Scottish colleagues.

It was regarded as a turning point in cytogenetics – the first human condition definitely attributable to aneuploidy (an unusual number of chromosomes).

...... almost a century elapsed between the clinical description of DS and its association with trisomy 21. When Jerome Lejeune associated DS with trisomy 21 in 1959, human cytogenetics was still maturing as a science; thus, Lejeune's discovery represents a landmark in the field.

O'Connor, C. Chromosomal abnormalities: Aneuploidies. Nature Education 1(1), (2008)

Trisomy 21 was the first human condition proven to be caused be aneuploidy (an unusual number of chromosomes), and discoveries about other aneuploidies follows quickly.

This key discovery is important for people with Down syndrome, but has had great benefits for others as well:

Recognition of Trisomy 21 has allowed scientists to look for causes of individual problems – what is genetic in DS, what is not, how intervention might bring benefits to either genetic or non-genetic traits.

Elucidation of other conditions for which genes occur on 21st chromosome has helped develop understanding of Alzheimers disease and leukaemia, for example.
People with DS are known to be at much lower risk of solid tumours than most of us – working out what is protective about chromosome 21 is helping to develop an understanding and therapies for solid tumour cancers.

Prof Jerome Lejeune continued to work in the field of cytogenetics, to great acclaim, until his death in 1994. He expressed great disappointment that his discovery had been used to identify Down syndrome prenatally for the purpose of terminating pregnancies. The search for the cause of Trisomy 21 continues, as does work to ameliorate harmful effects.

World Down Syndrome Day, celebrated internationally on 21st March, will this year focus on the anniversary of Lejuene's discovery.

Cumberland Retreat Open Day: Friday 20 March 2009

Where: The Cumberland Retreat

9 Tollgate Crescent

WINDSOR NSW 2756

When: Friday 20 March 2009, 9am—1pm

Please RSVP by Wednesday 18 March by contacting Stephanie on 9846 1517 or stephaniey@cumbind.com.au

Bring your colleagues and clients and come for a tour of the Cumberland Retreat and enjoy some light refreshments.

Click here for the flyer.

DS NSW professional development seminar: Dubbo

Update on Down syndrome
- a professional development seminar for adult disability services workers

Health and communication are two of the major issues impacting on the quality of life that people with Down syndrome can enjoy.

This seminar will be relevant to professionals working to support people with Down syndrome in residential, respite, recreation, and employment services, and to anyone who works closely with people with Down syndrome, wishing to update their knowledge.

10.00 am - 3.00 pm
Wednesday 8th April, 2009
Dubbo RSL Club
Dubbo, NSW

Cost per person: $132 - non-members; $99 – DS NSW members

Click here for a flier and registration form

All enquiries: Siena, ph 02 9683 4333 or carereducation@dsansw.org.au

Smile for life: training on oral care

Training about oral care for people with special needs designed for care-givers of people with intellectual disabilities (funded by Sydney West Area Health Service and NSW Health)

• What is it?
A half day inservice with a basic introduction to oral diseases, oral care (Special Needs Dentist) & diet (Dietitian), including a hands-on workshop.

• Where is it?
Westmead Hospital, Education Block.

• When is it?
Every 4th Thursday, 0900 -1230 hrs.
(23RD April; 28th May; 25th June)

• How much is it?
Free! (morning tea included)

• Would you like to book?
Contact:
Myrna Barcelon (02) 9845 5524 or Siva Premkumar (02) 9845 7019
Emails:
myrna_barcelon@wsahs.nsw.gov.au sivagami_premkumar@wsahs.nsw.gov.au

Fax: (02) 9845 5740

*Certificates of Attendance will be provided.


Click here to download the official brochure.

Danny Rumsey: Today Show (Ch. 9)

Did you see 19 yr old Daniel Rumsey's recent international swimming successes acknowledged on the Today Show (Channel 9) this morning? If not, you can see the video on the Today Show web page, here.

As the reporter said, Danny has been carving up the water for some years now. Here he is as a 12 year old, starting to make his mark on swimming:

And here is his medal haul from the 4th International Down Syndrome Swimming Championships in Portugal in December (where he captained Team Australia):

Daniel currently holds 13 World Records. He lives in the NSW Southern Highlands, and trains at Picton.

Previous posts on the 4th International Down Syndrome Swimming Championships - click here.

Library Thursdays: Resources for Making Visuals

Visuals play an important role in helping people with Down syndrome understand things more easily, prompt themselves and live easier, more independent lives.
In our library and on the web there are a few good resources for obtaining visuals or making your own.

Teaching by Design uses the computer and home made craft items to create visuals and make school work more visual. A CD-ROM template is included. Visual Strategies for Improving Communication: practical solutions for schools and home is a good source of practical ideas. Making Visual Supports Work at Home and in the Community (a simple book created for people with autism, but it works well for people with Down syndrome as well.)

A great website with free resources is: Visual Aids for Learning These visuals were created by Jenine and Wayne Addison whose son has Down syndrome and are excellent. They have kindly made them available for everyone and can be used for school and home and for various age group's need.

Disability Solutions also ran a couple of articles about using visuals in Issue 4 and 5 of Vol 5 by Patti McVay. Do2Learn and SET BC are other websites with useful visuals.

Let us know if you know of another great site for visuals. If you'd like to borrow any of the books on making and using visuals, just let us know.

Information event on sleep disorders in children with additional needs

This event is particularly relevant for parents of children with Down syndrome, who experience sleep disorders at a significantly higher rate than other children - it is an opportunity to hear from one of our leading experts in the field.

Waverley Council presents a round-table discussion and presentation on sleep disorders and their impact on behaviour and learning in children with special needs.

6.30pm–8.30pm

Tuesday, 21 April 2009

Free (spaces are limited)
Waverley Childcare Centre, Clementson Park,
Newland Street, Bondi Junction

Childcare and light refreshments will be provided

The session will be facilitated by Dr Dimitrios (Jim) Papadopoulas, whose qualifications and experience include

• FRACP in General Paediatrics
• Completed sub-specialty training in Paediatric Sleep Medicine
• In 2003 established Australia’s first multi-disciplinary Sleep Clinic specifically for developmentally delayed children (Children’s Sleep Medicine Service)
• In 2004 established the only private hospital Paediatric Sleep Unit in NSW
  Currently directs the Paediatric Sleep Disorders Unit at St George Private Hospital

Learn more about sleep disorders:

• Sleep problems are common in children of all ages.
• Disordered sleep affects mood, behaviour and cognition and can adversely impact on the whole family.
• Childhood sleep disorders are relatively easy to diagnose and treat, leading to measurable social,
  behavioural and neuro-cognitive benefits for children and their families.
• Brief case presentations and digital sleep study data will be used to illustrate sleep disorders and help explain polysomnography (sleep studies).

RSVP by 17 April 2009: Ph. Seak on 9386 7938

Click here for a flier

In Control Australia website launched

In Control Australia is a new movement of individuals, families, service providers and others who aim to change the social support system to one where there is self-directed funding and choice and control for individuals needing support in their lives.

See the new interactive In Control Australia website now at www.in-control.org.au.

Features include:

• Disability News and In Control News;
• Details of coming events and speakers on self-directed funding and person-centred tools;
• Forums for discussion;
• Links to other websites with research, information, and tools on self-directed funding.

Register on the site to sign up for premium content, including:

• A document library;
• Publications and submissions by In Control Australia;
• Presentations you can download about In Control Australia and self-directed funding.

The In Control Australia website is a work-in-progress. You are invited to send your feedback about the site and what you’d like to see there. Also send any relevant documents or links that you think could be put on the site.

Contact Name: Samantha Jenkinson
Contact Phone: 0412 887 674
Contact Email: enquiries@in-control.org.au

SCOPE: interview with ABC radio (Melbourne)

SCOPE is a major disability services provider in Victoria, supporting many people with complex disabilities and communication needs.


Diana Heggie, SCOPE's CEO, was interviewed for ABC radio’s Conversation Hour with Beverley O’Connor on Tuesday, January 20.

Click here (takes a little while to download) to listen to the wide ranging interview, covering the International Convention on People with Disabilities; self-directed funding; impact of the economic crisis; accessibility of community facilities; some aspects of inclusive practices.

A new family blog

The website of UK peak body Mencap includes a collection of blogs written by family members of people with a range of learning disabilities (the term used in the UK for which we in Australia use intellectual disability).

Click here to read Annabel's blog about her 10 year old son Freddie, who has Down syndrome. It's very new - just one entry so far, but there will be more to look forward to.

Down Syndrome and Alzheimer's disease: a family's experience

No-one wants to contemplate the possibility that their son or daughter might develop Alzheimer's disease at an early age (or at any age), but for some families of people with Down syndrome that is, or will be a reality. Rick Dean deals with the Stevens family's experience empathically, by looking at the rapid development of AD in the context of their 44 yr old son Jim's life as a whole.

For the Good Times, Topeka Capital Journal, 8th March 2009, by Rick Dean

Click here for other posts related to resources on Down syndrome and dementia, and a seminar with Diana Kerr in Sydney next month (6th April, 2009)

More on New Directions in Day Programs (DADHC)

Further to the earlier post on new day programs, an update received today: DADHC is offering the new programs more widely than the Northern Metropolitan Region - click here for information on New Directions in Day Programs across NSW.

Northern Metropolitan region: places available in new adult programs

Please note that the closing date for Expressions of Interest for these programs is Friday 13th March - this is very short notice. If you care for, or know someone with a disability who might benefit, please pass the information on to them urgently:


NSW Dept Ageing, Disability and Home Care (DADHC) has funded 44 placements in two new day programs for the Metro North Region in 2008/09. These are part of NSW Government’s ten year ‘Stronger Together’ plan. The new programs are Life Choices, offering 30 places and Active Ageing offering 14 places.


Of these 44 funded places, 8 of the Life Choices and 4 of the Active Ageing placements will be Disability Assistance Packages (DAP). DAP funding targets individuals living in the community with parents/carers over the age of 60 (or 45 for Aboriginal carers).

These two programs have a greater emphasis on user choice, age appropriate service and planning for changing needs as people age. Funding will be provided for a minimum 18 hours a week. The level of funding for each participant will depend on the level of support they require eg. moderate to very high (exceptional).


Life Choices is aimed at 25 to 54 year olds. The Program aims to:

• maintain participants’ capacity to participate in community life;


• enhance participants’ independence;


• facilitate and promote opportunities and pathways to ensure participants benefit from ongoing learning and personal development;


• support participants to develop and sustain social interactions and participate in the community; and


• provide a respite effect for their families and carers (DAP).

Active Ageing for people aged 55 to 64 or those with early onset ageing. The Program aims to:

• promote active and healthy older life;


• maintain participants’ capacity to participate in community life and remain independent;


• promote opportunities for participation in meaningful activities and ongoing personal development;


• support participants to develop and sustain social networks and interactions;


• facilitate pathways and future planning for older life; and


• provide a respite effect for families and carers (DAP).

For further information or referrals contact Brian Bernard on 9450 7957 or contact brian.bernard@dadhc.nsw.gov.au or samantha.livingston@dadhc.nsw.gov.au

Click here for more detailed information and here for an Expression of Interest/Application form. Completed forms need to be returned to

DADHC, Northern Metro Office, PO Box 1746, Hornsby Westfield NSW 1635

by 13th March 2009.

Another moving piece on Ivan Cameron's short life

UK Times journalist, India Knight, has also written a thoughtful reflection on Ivan Cameron's short life, David Cameron's open love for his son, published on 1st March, nicely complementing Dominic Lawson's thoughts.

Lessons from Cathal

Over at A Journey into Grandmotherhood, the always wise Nan P has been a given a communication lesson by the utterly charming Cathal - a nice anecdote and lesson for a quiet Sunday afternoon. Her latest photos are here, where he teaches her not to worry too much.

Comedy is King: an evening with Brian Doyle and friends

Save this date:

Comedy is King

Tuesday 7th July 2009

The Westin Sydney,

No. 1 Martin Place, Sydney

On behalf of Brian Doyle, join us for an evening with Brian Doyle and friends in aid of Down Syndrome NSW.

This will be a highly entertaining evening, featuring high profile comedians including Brian Doyle, and performances from some of Australia‘s premier artists. Stay tuned for more information to come.

Tickets: $250 per person. Corporate and VIP packages available.

You can book now on 1800 804 275

melanie@internationalevents.com.au

Check here for details.