Launch of book project: call for submissions

Submissions are being sought from parents (both mums and dads) who have a child with Down syndrome and who are keen to write about their experiences: of how they dealt with their child’s diagnosis; of what they thought life would be like with their child and how, in reality, it has turned out to be; and the gifts (for instance, acceptance, respect, love, courage and delight) that child has brought into their lives.

The submissions will be compiled into a national book, with the working title Now I See. The book is aimed at raising awareness (and challenging outdated ideas) about life today for children with Down syndrome and their parents. All submissions will be considered. More information: www.nowisee.com.au

Fraser Pollock - exhibition

If you enjoyed 13 year old Fraser Pollock's artwork in our Summer 2009 - 2010 Newsletter, you will be interested in seeing more. Fraser will be exhibiting with a number of other artists at the Sheffer Gallery (38 Lander Street, Darlington) 7th - 17th April 2010, in frank 'n' friends.

The gallery is open Wednesday to Saturday, 11 am - 6 pm. Ph 9320 5683

Accessible Arts: March 2010 Newsletter

As always, the March 2010 newsletter from Accessible Arts is full of news about opportunities to participate in arts events and activities. Read it online here.

2 new Special Olympics dance groups : Inner West

Two new dance classes for people with intellectual disabilities are being established in conjunction with Special Olympics Inner West region. Participants must register with Special Olympics to join in the regular program.

Registration is $70 per year and allows you to participate in any Special Olympics Program


1. Haberfield

Wednesdays, 5.15. - 6.30 pm
from 10th March 2010

Mervyn Fletcher Hall, 18 Dalhousie Street
Haberfield

Cost: $5 per session– paid per term

For more information about the program and registration please contact:

The Registrar ph. 0402 154 167, or maryrosewigan@optusnet.com.au



2. Canada Bay (Dorothy Cowie School of Dancing, sponsored by Canada Bay Council)


5.15pm-6.15pm Tuesdays, from Tuesday 9th March
Age is open from 7 years - Jazz/Hip Hop

Canada Bay Civic Hall
1a Marlborough Street Cnr Marlborough and Lyons rd)
Drummoyne
(Parking in Marlborough St and across the road in Franklin’s car park.

Tuition $50 per dancer per school term

For further information, volunteering & registration for Special Olympics contact:
Kathleen Collins , Sports Co coordinator for Special Olympics NSW Sydney Inner West Region , at kath2012@tpg.com.au or Ph 0405 100 753

Ten Things people with Down syndrome would like you to know ....

Here is a short presentation you might care to use to help celebrate World Down Syndrome Day (21st March, 2010)



If you wish to pass on a direct link, use: www.youtube.com/watch?v=tDjnNDRP_2o

From the Times Online - Simon Barnes: life with a son with Down's syndrome

Simon Barnes is a British Sports journalist and author, whose writing about his young son Eddie we have enjoyed and admired over the years. Now he's written a new book (not just about having a child with Down syndrome), and the Times Online has published an extract this weekend, about Eddie's love of books, how sign has enhanced his communication, and he poses the question, What is Eddie for?

His short answer is Eddie’s function is to be loved, and to love in return. Perhaps that is everybody’s ultimate function. Read the extract, and then maybe the book, My Natural History: The Animal Kingdom and How it Shaped Me by Simon Barnes (Short Books, not yet released) for the long answer.

The comments are appreciative and apt, without being overly sentimental - such as Thanks.......refreshing to read a piece that is so delightfully uncomplicated.

An earlier about Eddie, by Simon Barnes:

• I'm not a saint, just a parent

All the world's a stage - some can't get in

Adam Fulton's commentary on a recent Australia Council for the Arts report, focuses on participation in the arts by groups including those with disabilities (All the world's a stage - some can't get in, Sydney Morning Herald,Saturday 6th March, 2010)

..... amid the graphs and tables illustrating the positive findings in the Australia Council for the Arts report More than Bums on Seats: Australian participation in the arts was some less palatable news: people with disabilities and migrants from non-English-speaking countries are being left behind.

The council's last similar survey was released in 1999. How far has access to the arts progressed for people with disabilities – one in five nationwide, or more than 4 million? "Not very far would be my summary," Australia's Disability Discrimination Commissioner, Graeme Innes, says. Read on ....

• Australia Council for the Arts report

ABC TV - The New Inventors ‘Access and Ability Special’

Wednesday 10th March on ABC1 at 8:00pm

Featuring inventions by, and for people with a disability, they will look at some of the ingenious ways inventors are helping to ensure everyone has equal access to life, work and fun.

To celebrate these important innovations, James O'Loughlin will be joined by a special panel of experts living with a disability: paralympian Kurt Fearnley, filmmaker and presenter Sofya Gollan, and Federal Discrimination Commissioner Graeme Innes.

The show will also include an Auslan sign language interpreter, Jemina Napier, translating for hearing impaired viewers throughout the program, a first for The New Inventors.

Summary of upcoming events, March - May

We've posted about a number of events recently, here is a quick recap of Down Syndrome NSW events coming up soon:

Seminars for families and professionals in Orange, NSW 11th - 13th March

T4-321: World Down Syndrome Day 21st March 2010

Dance Like Nobody's Watching, film screening, Sydney 22nd March

Enchanted Forest, Kids For Life 6th Annual Ball, 27th March

Scrapheap Adventure, to Wanaaring NSW, 3rd April

Seminars with Assoc. Prof Keith McVilly, Rosehill, 30th April - 1st May

Survey of people with disabilities dealing with legal services

If you have a disability and have been in contact with any of the services listed below in the last twelve months, you are invited to share your experiences as part of a study. The confidential feedback will help to improve these legal services for people with disabilities.

• Anti Discrimination Board
• Administrative Decisions Tribunal
• Law Access
• Local Court
• Office of the Protective Commissioner
• Public Trustee
• Registry of Births Deaths & Marriages
• Victims Services
  

When: The study is taking place during February and March. It will take about an hour of your time.
Where: A location close to your home will be organised for the interview.

Participants are welcome to bring an advocate to the interview. Participants will receive a $75 Myer voucher as a thank you for participating in the study. For more information or to register your interest, call Richard at Taverner Research on 1800 212 290 or email dsurvey@taverner.com.au

Source: Carers NSW e-Bulletin, February 2010, PWD

Draft Australian Curriculum - consultation online; a challenge from St Lucy's School

Draft Australian Curriculum documents in the learning areas of English, maths, science and history are now available for online consultation at the Australian Curriculum website: www.australiancurriculum.edu.au until 23 May 2010. You need to register via the website to access the documents.

One public information session is scheduled for NSW, on 25th March, at a venue to be confirmed: www.acara.edu.au/public_information_sessions.html

The Chairman of the Australian Curriculum Assessment and Reporting Authority (ACARA), Prof Barry McGaw, is scheduled to be a keynote speaker at the 2010 National Conference of the Australian Association for Special Education in Darwin in June. AASE is actively monitoring, commenting on and contributing to the development of the national curriculum, and has highlighted ACARA's own guiding principle that

"..... the curriculum should be based on the assumptions that all students can learn and that every student matters. It should set high standards and ensure that they apply to all young Australians while acknowledging the different rates at which students develop" (ACARA, The Shape of the Australian Curriculum, p. 8)

to ensure that it is not compromised.

* * * * * * * * * * * *

St Lucy's School at Wahroonga (in northern Sydney) has issued a flyer about their planned challenge to the Australian Government, providing this information:

The Federal Government has heralded a new era in Australian education, an Education Revolution. They have said nothing about children with disabilities.

Students and parents of St Lucy’s and other special schools,together with friends of children with disabilities, are travelling to Canberra to put this question to the nation’s leaders.

Join us in asking the government:

Are children with disabilities part of the Education Revolution?

Thursday 18 March 2010

11.00am Gather in Federation Mall in front of Old Parliament House, Canberra

12.00pm Walk from Old to New Parliament House

12.30pm Children gather into one group to sing ’We Are Australian’

1.00pm Lunch

1.30pm Fun activities for the children

3.00pm Home

To help us cater for the day, please let us know if you’ll be joining us – call St Lucy’s School on 02 9487 1277 or email karenn@stlucys.org.au

Library Thursdays: The words of people with Down syndrome

Communication difficulties and community perceptions often hamper the voice of people with Down syndrome. The Down Syndrome Association of Los Angeles is spreading some voices with its "21 quotes in 21 days by 21 people with Trisomy 21 on what it's like to have Down syndrome" as part of the celebration of World Down Syndrome Day on the 21st of March. The quotes start on the 1st of March but you can sign up for their mailing list here to receive them.

Many of our resources in the library have excerpts written by people with Down syndrome and there are several where they have the main voice. Bus Girl by Gretchen Josephson (Brookline Books, 1997) is a book of poems written over the course of several decades. Count us In: Growing up with Down syndrome (Harcourt, 1994, 2007) is the once ground-breaking book by 2 young men with Down syndrome now with an updated afterword. A Special Kind of Hero by Chris Burke (Doubleday, Authors Guild Backinprint.com, 1991, 2001) is the actor's life story. I Just Am: a story of Down syndrome awareness and tolerance by Bryan and Tom Lambke (Five Star, 2006) is cowritten by a young man and his father about life. And another book, The Eyes of Raymond Hu (Art Media Resources, Chicago, 1996) while not a written story, gives Raymond's voice through his paintings (one shown on the right) . There are films too--OK, Let's talk about me,(SBS, 2004) about a 17 year old's view on life. Also the film, Dance Like Nobody's Watching which is showing for World Down Syndrome Day.

I hope that we can hear more voices more often in the future.

If you'd like to borrow any of these resources or anything else from the library, just email.

Recent online newsletters

Accessible Arts, February 2010 - includes profiles of two young people with Down syndrome who have secured work placements in the arts.

People With Disability (PWD) E-Bulletin No 59, February 2010

Young Carers E-News, February 2010

Latest DS NSW online publications

Speak UP! Issue 36, Autumn 2010 is now available online here. Speak UP! is a newsletter by and for people with Down syndrome, from the UP! Club.

Down Syndrome NSW e-Update, March 2010 is now available online here. The e-Update is a monthly bulletin of events and short information items.

A list of items added to the Down Syndrome NSW library collection from December 2009 to February 2010 is now available here. Members can arrange loans by email, phone or in person. Contact the librarian at library@dsansw.org.au or phone 9841 4410

Chuckle Club - friendship group for children with Down syndrome

Activities have been scheduled for March through to August this year for the friendship group known as the Chuckle Club - an informal social group for families who have primary school aged children with Down syndrome and their siblings living in Western Sydney, Blue Mountains or Hawkesbury districts.

The main goal of this group is developing social skills and friendships in a relaxed environment. If you are interested in participating in any of the scheduled activities please contact the nominated coordinator for more information.

Click here to download the schedule March - August, 2010

Key player found for transient leukaemia seen more commonly in babies with Down syndrome

Between 5 and 10 percent of babies with Down syndrome develop a transient form of leukemia that usually resolves on its own. However, for reasons that haven't been clear, 20 to 30 percent of these babies progress to a more serious leukemia known as Down syndrome acute megakaryoblastic leukemia (DS-AMKL), which affects the blood progenitor cells that form red blood cells and platelets. Now, researchers at Children's Hospital Boston have found a gene regulator they believe to be a key player in DS-AMKL, advancing understanding of how the disease develops and how to treat it.

The study findings, published in the March 1 issue of Genes and Development, may also help in understanding other forms of leukemia, the researchers say. Click here to read the full text of the news release from Children's Hospital, Boston.

Citation:
Jan-Henning Klusmann, Zhe Li, Katarina Bahmer, Aliaksandra Maroz, Mia Lee Koch, Stephan Emmrich, Frank J. Godinho, Stuart H. Orkin, Dirk Reinhardt. miR-125b-2 is a potential oncomiR on human chromosome 21 in megakaryoblastic leukemia. Genes and Development March 1, 2010: 24(5)

The full text of the article is available free online from the journal's website, here, either as a web page or a .pdf file.

In defence of family carers, and of improvements in employment support for people with disbailities

Three letters of interest are published in today's Sydney Morning Herald - two in response to yesterday's story on ADHC's failure to support the RASAID families' plan for long term supported accommodation, and one defending improvements in support for people with disabilities seeking employment. Click here and scroll down to:

Great strides in work for disabled, from Peter Tanner
Caring families need our support from Emeritus Prof Trevor Parmenter and from Peter Bailey

Beware what you wish for in supported accommodation ......

This morning's Sydney Morning Herald reports on the stalling of Sydney parent group, RASAID's, plans for out of home accommodation for their 20 adult sons and daughters, after what appeared to be some progress made with Ageing, Disability and Home Care (NSW Department of Human Services). Under the current regulations, if ADHC support were forthcoming, the parent group would lose control of who could be accommodated - a classic Catch 22:

Housing scheme for disabled adults in doubt as minister backs down
Erik Jensen, Sydney Morning Herald, March 1, 2010

The report prompted this media release from RASAID this morning:

Lynch Lies and Plays Catch 22 With Ageing Carers of Intellectually Disabled
The parents of a group of intellectually disabled adults in Sydney’s Ryde area are horrified that Paul Lynch, the NSW Minister for Ageing, Disability and Home Care (ADHC), has denied he ever gave in-principal approval to their innovative plans for supported accommodation for their 20 sons and daughters.

According to an article in today’s Sydney Morning Herald, “Mr. Lynch told the Herald the plan would be considered once land was available. '… I did not give in principle support to the RASAID proposal, as the land has not been secured and there would be numerous other steps which would have to be undertaken.'”

He also denied signing his name in the air after he’d given Jenny Rollo, now President of RASAID, verbal support of their plans. Ms Rollo says there were several witnesses to the aerial signature, at least one of who is prepared to swear in a statutory declaration that her version of events is correct. The others are members of the NSW Labor Party or employed by Minister Lynch. Commenting on this “signature” to Ms Rollo and another RASAID mother on the day it occurred, Lynch’s aide said, “If Minister Lynch wants this to happen, it WILL happen.”

But worse than being called a liar, Ms Rollo is outraged that the minister says the group’s model would be considered once land is secured. “He’s set up a Catch-22 situation,” she says.

Land owned by the NSW Department of Health in the Ryde district was identified as being available to RASAID in early 2009. At a meeting on June 16th 2009 between senior bureaucrats from the NSW Department of Health, the NSW ADHC, RASAID and the NGOchosen to build the project, an acre of land was to be offered for this project.

“The senior bureaucrat from ADHC told us at that meeting that even if our cluster housing was built, there was no guarantee that all, or in fact that any of our children would go into it because of the department’s Vacancy Management Policy. The plans of the land were then removed from the table, literally and figuratively,” says Ms Rollo.

ADHC’s Vacancy Management Policy stipulates that the department decides who goes into what available beds in NSW, rendering RASAID’s plans for an intentional community for its adult children with intellectual disabilities impossible.

Undeterred, Ms Rollo and another RASAID mother wrote to Minister Lynch, asking for him to meet with them and to override ADHC’s policy to allow their proposal to go ahead. The minister refused a meeting and said, via his staff, “We have no further developments to advise RASAID on at the moment.”

On November 2nd last year, four months after the original meeting when the land was to be offered, Ms Rollo received confirmation via the ADHC that the Department of Health land was still available for their project.

“It beggars belief that he now says he’ll consider our proposal once land is secured. Land can’t be secured unless he makes an exception to his department’s policy. It is that alone that is preventing the land from being offered,” says Ms Rollo.

RASAID is calling on Premier Kristina Keneally to step in and remove the bureaucratic barriers that are preventing RASAID’s development from going ahead.

RASAID’s supported accommodation model falls within ADHC guidelines for a cluster development to house intellectually disabled people. The model proposes that RASAID’s sons and daughters live together within the Ryde area, with their friends, near their families, day programs and work placements. The current system for housing intellectually disabled adults who can no longer live with their ageing or dead parents is ad hoc. The state meets only 7% of supported accommodation needs of adults with intellectual disability.

RASAID members are in their 50s, 60s, 70s and 80s. The oldest parent is a single mother, aged 87, still caring for her 51 year old son.

For more information on RASAID and contact details: www.rasaid.org.au

"Give disabled the chance to show their work skills"

Three letters were published by the Sydney Morning Herald today, in reply to Adele Horin's weekend column urging that employers be made to look more seriously at employing people with disabilities. Click here and scroll down to the heading "Give disabled the chance to show their work skills" .

Positive behaviour support and friendships: 2 seminars with Keith McVilly

Down Syndrome NSW is pleased to announce two Sydney seminars with eminent behavioural psychologist, Associate Professor Keith McVilly, Principal Research Fellow in School of Psychology, Deakin University, Melbourne.

Both events will be be held at Rydges Hotel, 116 James Ruse Drive, Rosehill

1. Behaviour Management
Encouraging positive behaviour in your students with Down syndrome at school

9:00am - 3:00pm
Friday 30th April 2010
Cost: $132 per person (non members); $99 per person (DS NSW members)

2. That’s what friends are for..Supporting young people with Down syndrome to make and keep friends

9:30am- 3:30pm
Saturday 1st May 2010
Cost: $55 per person
(Funded by NSW Health, under the NSW Carers Program, and Down Syndrome NSW, as a component of the “All the Way” Project, 2007-2010)

Registrations close: 23rd April 2010
Click here for a detailed brochure and registration form for Keith McVilly seminars