All links to other documents and websites in this Update are active - text will change colour as your mouse passes over them to indicate the link - click on the text to follow the links.

Scroll down to read everything, or click on the headings at left to go straight to an item of particular interest.

The deadline for copy for the AUGUST 2010 issue of the Down Syndrome NSW e-Update is 8th JULY 2010.  Email the Editor: update@dsansw.org.au  

You can also safely renew or apply for Membership and make a tax deductible donation to Down Syndrome NSW online. Click here to renew your membership to Down Syndrome NSW and make a donation today.  You will receive an automatic email receipt to assist you to claim your donation in your next tax return.

Click here to download and print the membership renewal/donation form included as an insert with the print edition of this Update.

Many thanks!

The first  and regular place to look for all the latest news and information about events and happenings is our blog, Keeping up with Down Syndrome NSW.   Think of it as something like your (almost) daily news bulletin. You can choose to receive notification each time it is updated, by subscribing through the links provided. You can also comment on any post. We can often post news and information on the blog much earlier than it can be published here or in print.

In addition to the items included in this Update, and other news, we have recently posted about 

News and information posts have included:

• Commentary on the recently tabled report, Enabling Australia, from the Australian Parliamentary Inquiry into the Immigration Treatment of People with Disabiity
• The impact of dementia on some older people with Down syndrome and their carers and a response from a family member
• NSW Budget - allocations services for people with a disability
• Scrapheap Adventure: the video! When too much Scrapheap Adventure is never enough ..... relive it on You Tube
   

• Library Thursdays, highlighting aspects of our collection
• News from around NSW, around Australia and around the world
• Information about  events and services
• Opportunities to participate in research
• Links to relevant and interesting sites elsewhere

• Keeping Up With Down Syndrome NSW

New roles
Down Syndrome NSW is expanding its professional team in the new financial year, developing some new projects, and expanding existing ones.

‘Independent Living Support Initiative’ - Project Manager
The Independent Living Support Initiative model will aim to assist people with a disability who have ageing carers to move into an independent living arrangement through intensive skills development, and by supporting their transition to long term accommodation including meeting their on-going support needs. DS NSW will develop the model in conjunction with service providers and Ageing, Disability and Home Care (ADHC), by building on the Up Up and Away program and existing independent living programs.
 
Program Research and Development Coordinator
 – this role will involve researching, developing and formally documenting and pricing educational modules, programs and services of DS NSW (current and future), developing evaluation tools, as well as documenting issues and collating evidence for advocacy campaigns. The role will also involve researching best practice programs from interstate and overseas, and examining how they may be applicable to NSW.

Marketing and Communications Coordinator
 - this role will involve developing written communications in particular, including grant applications, media releases, direct mail, brochures, etc.

Education and Resources Manager
– this role will oversee DS NSW’s expanding educational program including seminars and workshop program for carers and professionals, the DS NSW resources library, our publications and advocacy work

Education and Training Coordinator
– this role involves planning, organising, scheduling and implementing our state-wide educational events to meet the needs of parents and family carers of people with Down syndrome, and similarly, a series of information seminars for professionals working in the areas of health and education who directly support people with Down syndrome.

For more information about any of these positions please contact Steve Clarke on 02 9841 4408 or steve@dsansw.org.au or check the DS NSW website www.dsansw.org.au

• phone: 9841 4411
• email: workshops@dsansw.org.au
• flyers:www.dsansw.org.au  Click on the Whats On? menu along the top of the home page.

Both events will be held at

Canberra Southern Cross Club,
Corner Catchpole & Bowman Streets,
Macquarie, ACT

Friday 30th July
Playing to Their Strengths -  a workshop for teachers

$99 per person (DS NSW and ACT DSA members);  $132 per person (Non members)
incl morning tea, lunch and GST

• Click here for a flyer and registration form
   

Saturday 31st July
Preparing for School - a workshop for parents whose children with Down syndrome are enrolling in Kindergarten in 2011 or 2012
There is no charge for this event.

• Click here for a flyer

Adelaide
Foundation 21’s tenth Buddy Walk on 10/10/10 !

Perth
Sunday 10/10/10

Melbourne
Sunday 10/10/10

Canberra (Book & order shirts online)
Saturday 16/10/10

Newcastle (Book & order shirts online)
Sunday 17/10/10

Brisbane
Sunday 17/10/10

Sydney (Book & order shirts online)
Sunday 24/10/10

Wollongong, Wagga Wagga dates to be confirmed.

• REGISTER FOR NSW and ACT EVENTS Book online here or click here to download registration form and T shirt/cap orders now .
• Early bird specials are on offer if you book now!

This year, plans are a foot for a number of new Buddy Walks ..… Tasmania, Northern Territory, Bendigo and other locations are all planning their first Buddy Walks ..… stay tuned!

The Special Children’s Christmas Party will be held in Sydney on Wednesday 1st December, at Rosehill Gardens. Children aged 1 - 14 yrs and their families are invited.  A steam  train will run from Central to Rosehill as it was such a hit last year.

Tickets are always in demand - contact Priscilla at DS NSW on 9841 4404 or priscilla@dsansw.org.au or download the ticket request form from the DS NSW website: www.dsansw.org.au

SPCC events are also scheduled for Albury and Wollongong. See www.spcc.org.aufor details as they become available.

If you would like your event for parents of children, adolescents or adults who have Down syndrome advertised in the DS NSW Update, please email details to update@dsansw.org.au   Note that the deadline for each issue is 8th of the previous month.

Camden playgroup for children with special  needs

Last Friday of each month:  30th July,   9:30 am to 11:30 am

Mater Dei School, 229 Macquarie Grove Road. Camden
drive up to the “Bethany Early Intervention Centre”

• contact Kelly Charlton 0404 074 896

The Newcastle Down Syndrome Support Group
has organised its coffee mornings at different location and on different days of the week to cater for the schedules of many busy families, hoping you can join in at least sometimes:

When and Where?  From 10am, on

• Friday, 16 July – Jewells Tavern
• Tuesday, 24 August – Warners at the Bay
• Friday, 8 October – Jewells Tavern
• Tuesday, 16 November – Diggers @ Wallsend

• Contact: Anna Brown on 0414 90 90 40

St George and Sutherland  Shire
Venue: ADHC Early Childhood Service
390 Forest Rd Hurstville, opposite Rivers Store (carpark at rear)

• contact Mary Givney-Clark 9524 7496 or 0402 045 547

Northern Suburbs

• enquiries: Pauline Frewen  9659 7875 for dates and details

• email:  rdssg@bigpond.com

Hastings Makaton Parent Group - Wauchope
A group of parents get together every month to practise Makaton signs, play games, read/sign children’s books and just have a lot of fun.  
Teachers, careers, aides parents, friends all welcome,
Held Monthly on a Wednesday evening 5.30pm to 7pm at Wauchope  and all are welcome  No Charge 

• contact Julie Langeveld 6584 3844  or 0402 729 319 or email for more info  jlangeve@bigpond.net.au

• For further information please phone Melissa Cotterill on 0418 162 544 or 9825 1973 or email mmcotterill@bigpond.com

Highlighters Social Bowling: Castle Hill Wonderbowl
Social bowling comp for children with from the ages from 8 to 18 years old.
This is a very informal social event for children to have a bit of fun and for parents to catch up and have a cup of coffee.
2.00 pm on the last Sunday of every month

• Contact:  Maria Short 0413 359 225, or shortpmw@optusnet.com.au

Chuckle Club - a friendship group for children with Down syndrome
Activities have been scheduled for March through to August this year for 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.

Sunday 20th June -  Disco evening, Springwood

• Contact Helen Haigh, Siena O’Brien or Kathi Beck at DS NSW for details or a full schedule of events up to August  - phone 9841 4444, or email helenhaigh@dsansw.org.au

• Contact: Maria Short 0413 359 225  or Aileen Ryan: 9824 8332
  

• For further information please contact Michael Russo on 0412 477 526

• sports
• dance groups
• music groups and classes
• travel

•  More information: www.nowisee.com.au

Elite Optical is a leading supplier of optical lenses to Optometrists across Sydney and NSW.

The Director of Elite Optical, Peter French is a friend of Down Syndrome NSW Patron, Craig Wing, and is keen to support families of children and adults with Down syndrome by offering significant discounts on glasses and frame packages.

Peter said, “I know glasses can be a significant extra cost for families of children with Down syndrome, especially where the level of astigmatism or vision impairment is high, and non-standard lenses are required. It’s important that children with Down syndrome have their eyes tested regularly (at least every 12 months is recommended) to ensure their lenses are correctly prescribed.

I know that can be an expensive business and I want to make it as affordable as possible for families to ensure their child’s prescription and glasses are kept up-to-date.”

If you are interested in receiving a special Elite Optical – Down Syndrome NSW discount card which can be used when ordering your child’s glasses and frames, please contact Priscilla at Down Syndrome NSW on 9841 4404 or Priscilla@dsansw.org.au

Note: Offer available in Australia only. Offer available to carers of children with Down syndrome and to adults with Down syndrome when purchasing frames and lens packages for the person with Down syndrome only. Full details of offer and terms and conditions will be made available upon application.

You can support the DS NSW library by buying the Entertainment Book 2010 - 2011.


 

The Entertainment Book is a restaurant and activity guide that provides special 25-50% discounts and 2-for-1 incentives from many of the best restaurants, hotels and attractions. It represents great value for family entertainment. The featured restaurants and other businesses do not pay to be included, they are selected based on awards, reviews and personal recommendations. See the Entertainment Book web site for more information.

You can order localised editions, including North Sydney, The Hills/Parramatta, Canberra, Central Coast/Newcastle/The Hunter, and there are interstate and even New Zealand editions that would make great gifts.

•  Click here to download the Entertainment Book 2010-2011 order form for Sydney and North Sydney

•  Click here to download the Entertainment Book 2010 - 2011 order form for Parramatta and the Hills

 or contact Angela Adams at the DS NSW office on (02) 9841 4409 or email for an order form.
 
Thank you for your support - enjoy your Entertainment Book's benefits.admin@dsansw.org.au

9.00am-4.00pm, 3rd  Sunday  of each month.

Sunday 20th June
Cronulla Masonic Hall, 43 The Kingsway, CRONULLA

Entry by donation (Proceeds to Down Syndrome NSW)
Browse and buy from our stalls .... furniture, vintage fashion, collectibles, garden and homewares

Enquiries:  Robyn -  0425 243 520

This online series of lectures is another generous initiative of the very proactive Down Syndrome Program at Children's Hospital Boston, and is freely available to a worldwide audience. The program is run by Dr Brian Skotko, Dr Emily Davidson and Angela Lombardo.

"Oftentimes, we find ourselves with little time during clinical visits to discuss important topics, common to so many families. With this in mind, we wanted to honor the legacy of our Program's mentor, Allen C. Crocker, by initiating a lecture series."

The Allen C. Crocker Lecture Series is designed for parents and families members seeking quality information from experts on a range of topics related to Down syndrome. These lectures can be viewed, for free, at  www.childrenshospital.org/downsyndrome

The Series will take place on the fourth Monday of each month from 7:00-8:30 p.m (US East Coast time)., unless otherwise noted.  Families can view the lectures live via simulcast by following the instructions posted on our web page.

Families can access any of the lectures--and accompanying handouts - -on the web page at any time for free.

Parent lectures have been posted on:

• Mental health issues for people with Down syndrome
• Feeding and swallowing issues in infants with Down syndrome.
• Celiac disease and Down sydnrome

Upcoming talks:

• July 26, 2010 - Nutrition and Down sydnrome  presented by Kathryn Brown, MS, RD, LDN
• August 23, 2010 - What Your Other Children Are Thinking: Sibling Issues presented by Brian Skotko, MD, MPP and Sue Levine, MA, CSW
• September 27, 2010 - Obstructive Sleep Apnea in Down sydnrome  presented by Dennis Rosen, MD
• October 25, 2010 - Toilet Training and Down sydnrome  presented by Kimberly Dunn, PNP
• November 15, 2010 - Down Syndrome presented by Allen C. Crocker, MD

Monday August 9 2010

Theaterette, NSW Parliament House, Macquarie St,  Sydney

This seminar will showcase Homes West, Brisbane and My Place, Perth, two services that support people with disability in homes of their own with a combination of formal and informal support.

Access a flier and online registration via the Family Advocacy website here.

In Control Australia is a group of individuals and organisations who aim to bring about systemic policy change in Australia to enable individuals with disability and their families to manage their support. The organisation is an affiliate of In Control UK and works to provide an avenue for information exchange, critical inquiry, dialogue, collaboration, leadership and influence.

Modified touch football at Baulkham Hills
Norwest Rugby is considering developing a modified touch program, for boys and girls with special needs, aged from under 6 to 19 yrs old.
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

• More sports organisation and activities are listed on our website, here
  
• Sport, lesiure and arts events are regularly listed in our blog

• Visit  DownsEd here  for dates, times and costs.

The Bowel Group for Kids is a registered, Australian based charity dedicated to providing emotional support to families of children born with Hirschsprung’s disease, imperforate anus/ano-rectal malformations and associated conditions.

These conditions occur more commonly amongst children with Down Syndrome and BGK is well informed about Down syndrome.  

To learn about the support and information BGK offers, visit the website: www.bgk.org.au

New legislation now means that vulnerable Australians have the option of receiving their regular income support payments weekly, instead of fortnightly, to help them better manage their budgets. Centrelink staff are able to offer the weekly payment option to customers identified as having difficulties budgeting their payments across the fortnight under the Social Security and Family Legislation Amendment (Weekly Payments) Bill 2010.

For more information contact Centrelink:
www.centrelink.gov.au/internet/internet.nsf/contact_us/index.htm

James Vantol is a young man with Down syndrome and an entrepreneurial spirit.  James is continually honing his DJ skills, and is gaining a reputation as the man to have for your party.  His DJ business, Sydney City Disco, has a new website and email address:

www.sydneycitydiscotheque.com   

info@sydneycitydiscotheque.com