Sunday, 31 October 2010
The Don’t DIS my ABILITY ambassadors are chosen each year from the arts, sports and business fields. Throughout the campaign these ambassadors will attend a variety of events across NSW to promote the key messages of the campaign. In representing the campaign they help in changing misconceptions surrounding disability by creating an environment that encourages participation in careers, leisure pursuits and social activities.
Read about all 21 Ambassadors here
Events across Sydney and regional NSW are listed here.
You can download a copy of Made You Look, the official Don’t DIS my ABILITY magazine here, or pick up a print copy in local venues, as listed.
Don’t DIS my ABILITY website provides links to follow the campaign on Facebook and Twitter, and the Don't DIS blog.
The campaign officially launches on Tuesday, 2nd November.
Saturday, 30 October 2010
Kathy has developed and implemented early intervention programs with young children and their families, including running an early intervention reading program in Canberra for many years. Her PhD research investigated early reading and phonological awareness development in children with Down syndrome. Since moving to Sydney, Kathy has commenced her current early reading research with families of young children with Down syndrome.
Thursday, 28 October 2010
- Family - Early Years
Family - Childhood
Family - Teenage
Professional - Early Years
Professional - Childhood
Professional - Teenage
Professional Speech and Language
Since they are simply films of the conference, they could be a bit difficult to watch all at once since you don't have the same concentration that you would in a "live" conference. However, the information is so useful that it is watchable and you can use the convenience of a recording to take breaks when you need them and re-watch parts you missed that you couldn't do in a "live" conference.
The dvds are unfortunately only available in NTSC. Most dvd players are now capable of playing this format but because the films show the conference room with the notes up on a screen, I think the ease of reading these notes may have been aided by being in PAL format. If you think your dvd player would not play NTSC, you should be able to play them on your computer. There are some minor sound fluctuations, but these are not really a problem.
These dvds are a very valuable addition to the library. Down Syndrome Education International are certainly continually increasing access to their vast knowledge and research. Their books, dvds, webinars, conferences, journals, online help sessions, and now these new video recordings of this conference enable more people to educate themselves to help improve the lives of people with Down syndrome.
If you'd like to borrow any of these, just call or email.
DSEI Web Seminar Timetable
DSEI Online Advice session Timetable
Wednesday, 27 October 2010
Tuesday, 26 October 2010
All major political parties have endorsed the Supported Living Fund and committed to its implementation
Last night, before a meeting room crammed with over 200 families, the NSW Minister for Disability Services, Peter Primrose, the Shadow Minister Andrew Constance and Greens spokesperson Ian Cohen, unanimously endorsed the 4 key elements of the Supported Living Fund, namely:
- Providing new money
- Extending the target group to include families not in crisis
- Enabling people with disability to have a home of their own, using a combination of paid and unpaid/informal support
- Enabling families and people with disability to direct their own support
We want to thank all who have supported this campaign. Your personal letters, emails and meetings have brought our aspirations and challenges alive.
A verbal commitment is one thing...implementation is another. We will continue to work with both major parties in the lead up to the state election to bed down the next steps.
Finally, we need to build on the momentum generated by the campaign. For us at Family Advocacy, the priority is moving NSW to a self directed approach so that people with disability and their families have the opportunity and support to direct their own support, whatever the source of funding.
We will be in touch soon!!
Belinda Epstein-Frisch AM
For more information about the Supported Living campaign
Follow the campaign on facebook www.facebook.com/Supported.Living.Fund
Monday, 25 October 2010
Saturday, 23 October 2010
I am a mother of a child who has an intellectual disability. Reading Jack's story evokes strong emotions in me ("Support for living would save lives from despair", October 22). Having experienced disability service systems at first hand, I appreciate the bureaucratic nightmare that exists in a crisis-driven manner.
For Jack to be denied his rite of passage into a home of his own, supported by those who care about him, is outrageous. It demonstrates how little value is placed on people with differences and their right to an ordinary life like other young men and women.
The proposed Supported Living fund gives me hope for a better world for our daughter. Government has the power to light this flame or extinguish it. I need to hear a "yes" from Peter Primrose and Andrew Constance.
Dianne Samuels Towamba
Friday, 22 October 2010
This year’s Buddy Walk will be officially launched at 10am by Minister for Disability and Volunteering, Peter Primrose, Down Syndrome NSW President Ken Hancock and a representative of our UP!Club.
We will be walking from Circular Quay, through the Rocks and over the Sydney Harbour Bridge to Bradfield Park. Volunteer marshals will help guide our way. The Walk is about 2.5km, there is no hurry and everyone is encouraged to go at their own pace.
Concert and picnic
Whether or not you can make the Walk this year, everyone is welcome to come along and join in the celebrations at our free 30th Anniversary Concert (program below) and picnic at Bradfield Park (under the Bridge Pylons at Milsons Point – near Luna Park)
There will also be plenty for the younger kids with face-painting, tattooing, a clown and an enclosed children’s playground next to the concert area.
Concert and Entertainment Program – Bradfield Park
Guest DJ James Vantol warms up the crowd with some dance and music tracks. James is a member of the UP!Club and has set up Sydney City Discotheque
Acclaimed singer songwriter Phil Davidson, dad of Georgia who has Down syndrome, performs ‘Georgia’s Smile’ and other favourites
DanceAbility - Inspired by the Merrymakers, this inclusive dance group features children with a wide range of abilities, including children with Down syndrome.
Leonie Brown’s Dancers
“Raise Your Voice” An all singing group featuring young people with Down syndrome
Steve Passfield and Handpicked- Golden Guitar winner Steve Passfield (who also happens to be a dad of a young man with Down syndrome) will get everyone’s toes tapping and feet stomping in a high energy musical finale the whole family can enjoy.
TENTS AND ROVING ENTERTAINMENT
10am – 2pm
Face-painting, tattooing and roving clown
BBQ and Picnic
10:30am – 2pm
· Sausage sizzle (donation)
· Fresh orange juice and homemade lemonade ($3 and $5)
· Fruit stall (50c and $1.50)
· Soft drinks & coffee
BYO picnics welcome (you can use our new ‘picnic porter’ service to transport your picnic from Circular Quay to Bradfield Park)
History - Celebrating 30 years (1980 – 2010)
This year we are celebrating the 30th Anniversary of Down Syndrome NSW, the achievements of people with Down syndrome and their families, and the great steps forward made in the last 30 years, under the banner “we’ve come a long way, baby!”
Chief Executive Officer
Down Syndrome NSW
You can respond by sending a letter to the editor email@example.com or commenting on the article at firstname.lastname@example.org
For more information about the Supported Living campaign
Follow the campaign on facebook: www.facebook.com/Supported.Living.Fund
Run in partnership with ING Foundation, ING Australia and The Spastic Centre it is also draws to an end a 9 month Leadership program for young people with disabilities.
This is an exciting opportunity not to be missed!!
Presenting will be Sam Cawthorn; hear his amazing story of bouncing back after doctors said he would never survive. Blind athlete Lindy Hu and many others. Plus Live music from one of Australia's top Hip Hop artists - Morganics with special guest performers - The First Flight Crew!
Sat November 20th
Crowne Plaza Hotel, Baulkham Hills, NSW
$20 (includes lunch and light refreshments)
Register by 10th November.
For more information or an application form contact Peter Horsley, phone 9975 8466, email email@example.com or Josh Page, email firstname.lastname@example.org
Thursday, 21 October 2010
The arrival of The Guide to Good Health for Teens and Adults with Down syndrome by Dennis McGuire and Brian Chicone (Woodbine House, 2010) was much anticipated. All copies of the authors’ last book, Mental wellness for adults with Down syndrome, are continually borrowed from the library and most borrowers end up buying their own copy to refer to and re-read. I think The Guide to Good Health will be just as popular.
It is clear reading both books that the authors, Brian Chicoine and Dennis McGuire, directors of the Adult Down Syndrome Center of Lutheran General Hospital in Chicago, have spent much time with teenagers and adults with Down syndrome. That time has built up knowledge, respect towards, compassion and understanding of people with Down syndrome. It is clear that the authors have the skill and desire to help people with Down syndrome achieve good health and satisfying lives. It would be great if we all could have such doctors looking after us. The Guide to Good Health provides the next best thing.
Chicoine & McGuire explain the issues that affect health care of people with Down syndrome. They discuss how to promote good health in teens and adults, what doctor visits can achieve, what health problems occur more or less frequently in people with Down syndrome, how health concerns present differently and the interaction between physical and mental health. They use many case studies throughout the book to illustrate how problems may present.
A large section of the book is devoted to information about specific conditions that may occur in a person with Down syndrome. This section covers all areas of the body—skin and nail problems; ear, nose and throat and dental concerns; eye and vision; cardiac and pulmonary; gastrointestinal and liver; urology; orthopedic; thyroid and diabetes; gynecology; and neurological issues. Sleep problems, healthy sexuality and abuse prevention, cancer and Alzheimer disease are also included. Each condition’s symptoms, diagnosis and treatments are covered. A new parent may be overwhelmed at the possibilities but for parents of teens and adults, the descriptions and information are very useful when trying to decide whether further investigation is warranted or when a problem seems likely and more information is needed. This section would be particularly helpful to health professionals or carers working with people with Down syndrome.
Hospitalisation and care, long-term health care (including living arrangements), end of life decision (advance directives) as well as addenda with the health screening guidelines and recommendations on drinking fluids are also included.
A book like this has long been needed. The format is easy to use. The case studies, photos and sidebars all add to understanding. It complements Mental Wellness very well. There is some overlap between the two, but The Guide to Good Health focuses largely on medical issues and Mental Wellness focuses on behavioural issues. I feel that The Guide to Good Health is a required reference book for any health professional working with people with Down syndrome and family members will also find it extremely useful.
Adult Down Syndrome Clinic on Facebook - has many interesting notes.
To borrow The Guide to Good Health... or Mental Wellness ... or any other resources, just call or email us.
Wednesday, 20 October 2010
The speakers reported promising initial findings from the early stages of a landmark trial of a language and reading programme designed for children with Down syndrome. Nearly 60 children with Down syndrome attending mainstream primary schools in York and Portsmouth are participating.
The study is the first large controlled trial of a educational intervention for children with Down syndrome.
Read on at Down Syndrome Educational News
3 November 2010. Free Disability Sports Expo, Holroyd. For more information contact Paul Spiteri on 02 9840 9913 or email@example.com.
3 December 2010. Embracing Diversity Festival, Albury/Wodonga. For more information contact Deborah Ross on 02 6055 3411 or DeborahRoss@wangaratta.vic.gov.au.
Tuesday, 19 October 2010
The 5th Down Syndrome International Swimming Championships were held in Taipei 2-7th October. Australia sent a team of 17 swimmers, including only three from NSW. The championships are run with heats and the best swimmers racing in the final, so the gold medal goes to the best swimmer in the world. The competition was stiff with more than twenty countries competing. There are some seriously good swimmers from Great Britain, Mexico, South Africa and Italy and teams from all over the world attended. Big teams attended from the neighbouring Asian countries, which was great.
The Australian team was very successful especially in the relays, where we had several swimmers of a high level so could make up winning teams. The Aussies are beautifully presented as a team always and absolutely love their time away as ‘The Australian team’. That feeling of representing your country is magnificent.
Our NSW swimmers did well. Brendan Foley, Daniel Rumsey and Lucy Dumitrescu had to race the others in the Australian team as well as the rest of the world which made it even more difficult. Daniel Rumsey was awarded Male Swimmer of the meet with 10 world records. Considering the work that these three swimmers have done over the past years, their medals were well-deserved!
8 World records (Masters Category)
Category Trisomy 21
10 World records
Relays 3 Gold, 1 Silver
Lucy Dumitrescu - Team Leader (Female)
Relays: 3 gold
It would be great to see more NSW swimmers participating next time when the championships will be in Italy. Start training! It is fantastic to see a swim meet dedicated to DS swimmers only, with no other categories included. At last, like swimming against like!
Down Syndrome Down Under Swimming Organisation: www.dsduso.org
Buddy Walk Sydney
Sunday 24th October (Down Syndrome NSW)
My Time Green Valley - Guest Speaker, Dr Kathy Cologon (Macquarie University)
Political Forum on a Supported Living Fund for NSW
Monday 25th October (Family Advocacy)
Show Your Strength Rally
Thursday 28th October (National Disability Services)
Signing for Parents of Babies and Toddlers Workshop
Friday 29th October (Down Syndrome NSW)
Buddy Walk Wollongong
Sunday 31st October (Down Syndrome NSW)
Both at Mark’s Park, Tamarama
Saturday 6 November at
1.00 pm till 2.30 pm
Wednesday 10 November at
5.30pm till 7.00pm
Each tour will have a guide explaining the sculptures in Easy English, for people who have difficulty reading and understanding written information. s it easier to learn about and enjoy the sculptures.
The tours are free but you have to book your tour. Places are limited. Book now!
Call 8399 0233 to make a booking. For more information and to make a booking on line go to Sculpture by the Sea
Source: Accessible Arts
Monday, 18 October 2010
Sunday, 17 October 2010
For full results, photos and other news, visit the Down Syndrome Down Under Swimming Organisation
Friday, 15 October 2010
Disability reform, including a national no-fault insurance scheme, will be a key social policy priority for the Gillard government.
Jenny Macklin yesterday told The Australian that the government will take "very seriously" any recommendation made next year by the Productivity Commission, for a National Disability Insurance Scheme.
The Community Services Minister met the commission's expert panel on long-term disability care and support in Sydney yesterday, with a future NDIS high on the agenda.
"I wanted to attend this first meeting after the election to indicate to them that as senior minister I'd be taking responsibility for this area and also to show the importance that both I and government attach to it," Ms Macklin said.
She said the government was waiting for the commission's draft report early next year before its final report mid-year, at which time "the government will look very seriously at the recommendations".
With an estimated 760,000 people under the age of 65 living with a severe or profound disability, support for changes in the way the disabled receive assistance is mounting.
During the election campaign, Julia Gillard said introducing an NDIS would be a "very, very major shift . . . but the status quo can't stay".
And in flagging-up the government's second-term agenda on September 28, Governor-General Quentin Bryce made a specific reference to disability as "a national priority that needs a national response".
"The government therefore looks forward to giving careful consideration to the Productivity Commission's forthcoming report on a national disability insurance scheme," Ms Bryce said.
Ms Macklin said disability reform was one of her top portfolio priorities for the current term.
"Like the Prime Minister, I know the current system is not good enough, and we know we need a new approach," Ms Macklin said.
"In the meantime, we have put in place some other significant reforms, including substantial improvements to the disability support pension."
It will be held in the hall, starting at 10:00 am.
There will be face painting, games, jumping castle and sausage sizzle.
For further info call Jan 0458 282 545 or Lisa 0423 743 531 or Tracey 0425 335 172.
More information will be posted as it becomes available.
We hope all are safe and as dry as they can be in Wagga Wagga and surrounding districts.
Fingers crossed for Canberra (Saturday 16th) and Newcastle (Sunday 17th).
Down Syndrome NSW members Evelyn Scott and her daughter Kylie have been interviewed by Channel 9 News to mark Carers Week (next week).
Look out for them on Channel 9 News bulletins next week – most likely to be, we are informed, the 6pm bulletin on Wednesday 20th October.
Thursday, 14 October 2010
Wednesday, 13 October 2010
Tuesday, 12 October 2010
And two more replies are published in today's Letters to the editor, scroll down to Living ordinary lives is everything.
Monday, 11 October 2010
Walk Marshals are required from 8:30am to around 11 – 11:30am. A few volunteers are required earlier to help with set up and registrations, and some later to volunteer at the picnic and concert (until around 2:30pm) – different jobs are required at different times, so when you register please indicate the hours you would be available.
To volunteer, please contact Priscilla, on Priscilla@dsansw.org.au 9841 4404 or 0417 066 845, or go to www.nsw.buddywalk.org.au and click the link to ‘book online for Buddy Walk Sydney’ (please let us know your t-shirt size for your free Buddy Walk volunteer t-shirt!)
All volunteers are invited to stay to join us for the picnic – free sausage sizzle and refreshments – and free 30th anniversary concert.
Further details about volunteering and about the event are here. You can also share this information with potential volunteers via Facebook.
No agenda - about Cedar, a young woman who grew up in the wide open spaces of Montana, with a great rapport and skill with horses.
Faulkner (University) dedicates field in honor of Stalling's son - Gene Stallings is a well known US football coach, whose book, Another Season: A Coach's Story of Raising an Exceptional Son, about his son, John Mark who had Down syndrome is available for members to borrow from our library.
Saturday, 9 October 2010
- In 1998 more than 2000 people with disabilities live in residential centres. NSW government says they will close by 2010.
- Now 1600 still live in those centres.
- There are 31 residential centres.
- The largest centre has more than 400 people.
- There are no plans for the redevelopment or closure of the remaining six ADHC centres, accommodating more than 900 people.
- Of the 22 non-government residential centres, public plans are in place for the redevelopment of two of them.
Friday, 8 October 2010
Free online advice sessions
A timetable for free online advice sessions taking place to the end of the year is now available. Topics include reading, literacy, inclusion and the See and Learn programmes:
Web seminars and online courses
A timetable of events from now until June 2011 is now available:
Very useful and accessible for families and professionals everywhere.
Not every accommodation that needs to be made at school is directly about teaching and learning - we need to attend to the ordinary and the biological before the teaching can be effective and learning can happen. A good reminder of another "non-behavioural" and "non-disability" cause of challenging behaviour.
Thursday, 7 October 2010
Diagnosis Down Syndrome: A Pregnant Mother's Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Meredith looks at the feelings you may have, how to break the news to family and friends, how to deal with others' comments, birth plans, preparing for breastfeeding, possible health issues, early intervention and other services and finding resources.
The comments included in the booklet were taken from online forums, Downsyn (http://www.downsyn.com/), Uno Mas! (http://www.unomas21.com/) and T21 Online Community (http://www.t21online.com/).
These articles include twelve peer-reviewed research reports, reviews and case-studies, alongside a research forum report, an independent review of the Down Syndrome Issues and Information – Adult Living Series (reviewed by Prof Trevor Parmenter), and three articles presenting the practical observations of families, carers and practitioners.
Titles, brief descriptions and links to each article are here.
Alan Jones, AO, has agreed to MC the formalities and we need your help to secure the attendance of at least 5,000 people at the rally.
The Premier, Kristina Keneally and Leader of the Opposition, Barry O’Farrell have both been invited to attend and speak at the rally.
Here’s how you can get involved:
• A website has been created with all information you need: www.showyourstrength.com.au
• A Facebook page is also operating which you can join to show your support, and you can suggest this page to friends: www.facebook.com/#!/showyourSTRENGTH?ref=ts
• And a Facebook event that you can say you’re attending, and invite friends to attend: www.facebook.com/#!/event.php?eid=155540344471009&index=1
• Attend the Rally for Stronger Together on Thursday 28 October at the Sydney Opera House, and encourage others to attend.
Rally formalities commence at 12 noon and run for approximately 45 minutes, though we advise that you assemble at the Sydney Opera House by 11.30 am.
The theme of the rally is “Show Your STRENGTH”, calling the sector, people with disability, families, carers, and the community to gather in support of the successes achieved over the past five years under Stronger Together and to encourage the Premier and the Opposition Leader to ‘show their strength’ by elevating the critical issue of disability above the political fray and sign a joint commitment to fund the second five years of Stronger Together.
This rally is an opportunity for the disability sector to show its strength and we need your support to make this rally a success.
In the spirit of being ‘stronger together’, the priority of the day is to secure unified, bipartisan support for funding the second five years of Stronger Together. While numerous important issues and challenges face the sector, the focus of the day is the bigger picture of Stronger Together funding rather than compete with other debates and agendas. The rally’s success depends on it, as does the sector’s support to continue to deliver services and outcomes for people with disability, their families and carers in NSW.
National Disability Services - New South Wales
Wednesday, 6 October 2010
NSW and ACT students with disabilities are being offered an opportunity many other junior cricketers only dream about: the chance to play in a match on Bradman Oval.
Dream Cricket Day, on Friday 29th October, gives primary school students the chance to share in an exciting game of cricket and visit the Bradman Museum, with the underlying aim to promote the health and wellbeing of these students.
The Hon. John Howard, Patron of the Dream Cricket Day, encourages all school principals to send students to support this outstanding initiative, which will provide a model for schools and communities to follow by arranging similar activities in the future.
The Dream Cricket Day is an initiative of The Movement Disorder Foundation conducted by The Rotary Clubs of Berrima, Bowral-Mittagong and Moss Vale with the support from the Bradman Foundation, the Cerebral Foundation, Northcott Disability Services and many generous sponsors.
Nominations for participants are open until Friday 8 October. For more information and a registration form email: firstname.lastname@example.org or call Ken Adams on 0407 653 175 or Brian Pattinson on 0409 828 030.
Program Name: Saturday Activities
Age Group: 5-8 (Puggles) and 8-12 (Echidnas)
Disability: Mild to Moderate
Eligibility: Assessment and Trial Outings
When: During the School Terms
Frequency: One Saturday Every Fortnight
Format: Outings and In-Centre Activities
For an Application Pack contact:
Gaye Terzioglu-Booth - Co-ordinator
Mobile: 0438 276 338
Office: 9346 1429
Fax: 9346 1204
Political Candidates Forum
7.30 - 9.00 pm Monday 25 October
(note change of date from 15th October at Parramatta as announced earlier)
Ryde Eastwood Leagues Club
117 Ryedale Road
Click here to go to the Family Advocacy website for all details of the event and the campaign.
Tuesday, 5 October 2010
10.00 am - 1.00 pm
Monday 25th October 2010
Guest speaker: Dr Kathy Cologon, Macquarie University, on early literacy and numeracy development in children with Down syndrome
Frank Oliveri Centre, 450 Tantangara St (cnr of Jindabyne St)
For further information please phone Melissa Cotterill on 0418 162 544 or 9825 1973 or email email@example.com
Physical and Mental Health Promotion for People with an Intellectual Disability - a workshop for families, service providers and other professionals
with CDS on 11th October - bookings close today (5th October).
Phone 8878 0500 email firstname.lastname@example.org for further information, or to register.
Don't miss this opportunity to hear from Dr Seeta Durvasula and Rachel Dickson, both of whom work with many people with intellectual disabilities, including Down syndrome, every week.
Monday, 4 October 2010
Saturday, 2 October 2010
It is her 50th Birthday and everyone is invited. There will be a raffle with all proceeds going to Down Syndrome NSW.
Friday the 8th of October at 8pm.
Golden Nights Restaurant in Bankstown.
The cost is $60 and includes a full Mezza and soft drink.
There will be an Arabic band and performances by some of Sydney.s top belly dancers such as Shiva, Rabiya, Popi and Jrisi. There is a large dance floor and plenty of time to dance.
Contact Annette on 0408 310 960 to book.