Wednesday, 31 March 2010
In preparation for the Federal election scheduled for later this year, and a NSW State election in March 2011, the Mad as Hell campaign has been launched to focus attention on the unmet needs of people with disabilities and their carers, and to encourage voters to actively look for policies that will support people with disabilities. Visit the website to read about the campaign and to take the We're Mad as Hell pledge.
- you are invited to an information morning. Our librarian will be available to assist you in choosing appropriate resources from our library.
Enjoy an opportunity to meet with other parents and share experiences and information
Thursday 29th April, 2010
10:00am – 12:30pm
At our new DS NSW Seminar Room
80 Weston Street, Harris Park
Morning tea will be provided, but if you would like to bring morning tea to share it would be appreciated! (Please no peanut products)
Young children are welcome but must be supervised at all times by the parent.
If you wish to attend or require further information, please
- phone Lynn or Miriam at DS NSW, on 9841 4401
- or Maha on 0408 205 522
That's what friends are for ..... supporting young people with Down syndrome to make and keep friends
Saturday, 29th May: Tamworth
9.30 am - 3.30 pm
Best Western Sanctuary Inn, Tamworth, NSW
presented by Susan Jones, Step Ahead ConsultingFlyer and registration form can be downloaded from here
- or contact Siena at DS NSW: ph. 02 9841 4411 or email@example.com
DownsEd In Touch also reports the very positive feedback from the first free online research seminar held last week - some of our staff participated and found it very worthwhile. Future dates and AEST sessions are here.
Monday, 29 March 2010
We like to think we care deeply about those who suffer. We like to believe we are willing to do whatever we can to help those burdened by intellectual or physical disability. It seems to resonate with the way we believe we ought to act towards our fellow human beings.
But there are indications our society is moving towards avoiding having to associate or engage with the disabled, particularly the intellectually impaired.
The situation of the disappearing Down syndrome babies in Australia in the past few decades is a case in point. Of about 300 pregnancy terminations in NSW every year due to detected birth defects, 77 per cent are associated with a chromosomal abnormality. The most common is Down syndrome. Read on for the entire column.
The online publication has drawn wide ranging comments.
Edit 31/03/2010: And replies in the letters column yesterday and today also pose different view - click here and here.
The NSW Minister for Disability Services Paul Lynch today welcomed the start of a major research project into the provision of therapy services in rural and remote NSW.
Mr Lynch said the four year project, a joint enterprise between Ageing Disability and Home Care (ADHC) and the University of Sydney would focus on the effectiveness of the delivery of psychology and therapy services to people with disabilities living in rural and remote NSW.
“The project will be managed by Professor Craig Veitch of Community Based Health Care at Sydney University and ADHC’s Western Region Director, Scott Griffiths and his staff,” Mr Lynch said.
“The project will focus on three areas of therapy provided by ADHC in the Western Region - speech, occupational and physiotherapy, and psychology.
“The researchers will cooperate with clinicians who are working with people with disabilities in the Western Region.
“Given the lack of research in this particular area, there is little doubt the project will provide a new set of information will assist in the formulation of policy, future education of psychology and therapy students, as well as how they will deliver services in rural and remote communities,” he said.
The Dean of the Faculty of Health Sciences at the University of Sydney, Professor Gwynnyth Llewellyn, said the project is vital to the ongoing development of services for people with disabilities.
Professor Llewellyn launched the project on Wednesday 10 March 2010 at Ageing, Disability and Home Care Regional Office,Dubbo
Sunday, 28 March 2010
Scrapheap Adventure Ride Touring Shirts now on sale - great mementos of this unique event. Click here to purchase your shirt.
From i:D, March 2010 .... the bulletin of the Disability Council of NSW
The NSW Parliament’s Standing Committee on Social Issues has published its report on the Parliamentary Inquiry into “Substitute decision-making for people lacking capacity”. The report is available in PDF at the Committee’s web site.
The Report makes the following general observations (which are broadly consistent with the Disability Council’s submission to the Inquiry):
“Any provisions for substitute decision-making must strike a delicate balance between two competing duties of government towards people with disabilities – to respect and maximise their autonomy while at the same time protecting them from abuse. The manner in which these competing duties have been weighed throughout history reflects the dominant paradigm of the era in relation to the treatment of people with disabilities.”
“The current paradigm, which emphasis principles such as the presumption of capacity, the principle of least restriction and the promotion of assisted decision-making – as opposed to substitute decision-making – is largely enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The way in which the UNCRPD can inform and be incorporated into NSW legislation formed one of the major themes of this report.”
The Committee makes 35 Recommendations including the following matters:
- Introducing a legal definition of capacity;
- Creating a presumption of capacity;
- Support for assisted decision-making;
- Further recognition of the concept of ‘best interest’;
- Reviews of Guardianship automatically triggered by evidence of re-gained capacity;
- Automatic review of Financial Management Orders;
- Consideration of legislation to enshrine least restriction in practice;
- Assisted decision-making powers for the Public Guardian to allow it to assist people not under Guardianship;
- Creation of an Office of the Public Advocate;
- An inquiry into end of life decision-making.
For further information" www.disabilitycouncil.nsw.gov.au
Thursday, 25 March 2010
Wednesday, 24 March 2010
Jacob Short and Ji Butler are like most other teenage boys.
They spend endless afternoons on the Playstation, competing against each other in Wii Sports and love hitting the bowling alley or having a game of bocce.
They just have something extra which makes them a little different - an extra chromosome.
Both boys have Down syndrome and their folks think its a blessing and a privilege to parent such spirited sons ..... Read the entire article from the Blacktown Advocate here.
As they live longer, adults with Down syndrome — who have an extra copy of chromosome 21 — are teaching scientists about the genetic roots of aging, says Ira Lott, head of pediatric neurology at the University of California-Irvine School of Medicine.
Scientists today are searching this chromosome, which contains only about 200 of the body's roughly 20,000 genes, to learn why people with Down syndrome suffer disproportionately from some health problems, such as Alzheimer's disease, but are spared many others, such as heart attacks, strokes and certain types of cancer.
By studying adults with Down syndrome, researchers hope to find new ways to combat diseases of aging in the larger population as well, Lott says.
"It's an interesting detective story," says Lott, head of the science advisory board of the National Down Syndrome Society. "People with Down syndrome are unique when it comes to many aspects of aging."
Reeves says he's grateful to the Down syndrome community for teaching scientists so much.
"If it weren't for people with Down syndrome having fewer tumors," Reeves says, "we never would have thought to look for anything like this."
To read the entire article and to see the photos, click here.
Tuesday, 23 March 2010
The Kelly family of Dural will be spending Easter on a big red dirt road heading west of Bourke.
For 14-year-old Cassie and her mum Fiona it will be a fairly comfortable ride in the Landcruiser while Cassie’s dad Rod will doing it tough on an old postie’s bike.
Read on for more, and a picture of the bike.
Down Syndrome New SOuth Wales: call 02 9841 4444, or email firstname.lastname@example.org
G.A.P. Media: http://gapmedia.com.au
DS NSW members can borrow a copy from our library.
Your local library might be interested in adding it to its collection - just ask the librarians.
Monday, 22 March 2010
Friday, 19 March 2010
More World Down Syndrome Day events around NSW
Vintage by the Sea - Shabby Chic Market
Sunday 21st March, Cronulla, 9am – 4pm
Cronulla Masonic Hall
43 The Kingsway, Cronulla
Inquiries: Robyn 0425 243 520
Penrith - World Down Syndrome Day Afternoon Tea 4 '321'
Sunday 21st March, 2pm
Church of Christ, 156 Stafford St, Penrith
All welcome – but please rsvp for catering (call Siena on 042 5207 916)
Narrabri: World DS Day Lakeside Picnic and Games
Cheer on ‘TEAM MOG’ in the Tuff Truck Challenge 2010
27th - 29th March: Hunter Valley
Attempting a top ten finish, raising funds for Down syndrome
nr Milbrodale in the Hunter Valley
Support Team Mog by clicking here or go to www.tufftruck.com.au for details of how to attend .
2nd - 4th April: Wanaaring
An adventurous outback World Down Syndrome Day event…
Cheer our 'Scrapheap Adventurers' as struggle to get to Wanaaring (200km back of Bourke) before the Easter bunny on their machines resurrected from the scrapheap.
Follow their journeys on ther blogs and give them your support at the Scrapheap website www.scrapheapadventure.com.au
Bike or no bike... everyone's welcome at the Wanaaring Pub on Saturday 3rd of April to celebrate World Down Syndrome Day in unique style...
Sunday 18th April: Five Dock
World Down Syndrome Day Morning Tea 4 '321'
All Hallows Catholic Church
Halley St Five dock
After the 10am Mass (approx 11am)
Special Guest: The Mayor, Angelo Tsirekas
Thursday, 18 March 2010
Wednesday, 17 March 2010
Enchanted Forest details here
The rules are not finalised and there is an opportunity for parental input. Parents would be required to remain on site, to provide adequate supervision.
For information phone Mike Cox, from Norwest Rugby on 0415 230 524
Tuesday, 16 March 2010
If you would like to share in this special day please just come. We love to share fun times.
We will meet from 11.30 for a BBQ and catch up. Bring your own lunch eg sausages, bread, drinks and perhaps a salad or slice to share and a chair for between games.
We have a set of boules but are looking for a set of quoits for games and a basket ball so we can maybe shoot a few hoops at the new court.
If it is wet we could adjourn to the Wilga.
Phone Marion on 6792 3420 or just turn up
Saturday, 13 March 2010
Friday, 12 March 2010
The online edition of the Down Syndrome NSW News supplement, March 2010 is available online here, including links to the Voice March 2010 feature articles.
Thursday, 11 March 2010
Wednesday, 10 March 2010
From 19 March to 19 April 2010, police officers will take the 'Flame of Hope' through 40 cities across six states and territories in 29 days to support Special Olympics Australia, the charity that transforms the lives of people with an intellectual disability through regular sports participation and social inclusion.
Special Olympics needs your support to continue running 11,000 weekly sports sessions for people with an intellectual disability across 250 sports clubs in Australia.
The 2010 Run with the LAW fun run aims to promote equality, acceptance and friendship of people with an intellectual disability, and you’re invited to be part of this history-making event. Everyone is welcome!
Simply register to run a full leg, half leg or last 100 metres in any of the 40 events across Queensland, New South Wales, ACT, Victoria, Tasmania and South Australia and you will be the first to experience the fun and excitement of Run with the Law and, at the same time, make a difference to people with an intellectual disability living in your community.
So, register today. Just click REGISTER TO RUN to start your own fundraising page:
or contact email@example.com
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
The gallery is open Wednesday to Saturday, 11 am - 6 pm. Ph 9320 5683
Monday, 8 March 2010
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
Wednesdays, 5.15. - 6.30 pm
from 10th March 2010
Mervyn Fletcher Hall, 18 Dalhousie Street
Cost: $5 per session– paid per term
For more information about the program and registration please contact:
The Registrar ph. 0402 154 167, or firstname.lastname@example.org
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)
(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 email@example.com or Ph 0405 100 753
If you wish to pass on a direct link, use: www.youtube.com/watch?v=tDjnNDRP_2o
Sunday, 7 March 2010
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:
Saturday, 6 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 ....
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.
Seminars for families and professionals in Orange, NSW 11th - 13th 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
Friday, 5 March 2010
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 firstname.lastname@example.org
Source: Carers NSW e-Bulletin, February 2010, PWD
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’
1.30pm Fun activities for the children
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 email@example.com
Thursday, 4 March 2010
People With Disability (PWD) E-Bulletin No 59, February 2010
Young Carers E-News, February 2010
Wednesday, 3 March 2010
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 firstname.lastname@example.org or phone 9841 4410
Click here to download the schedule March - August, 2010
Tuesday, 2 March 2010
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.
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.
Great strides in work for disabled, from Peter Tanner
Caring families need our support from Emeritus Prof Trevor Parmenter and from Peter Bailey
Monday, 1 March 2010
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
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
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