Person Centred Approaches Consultations with culturally & linguistically diverse communities, in 17 community languages

The NSW Government is conducting Person Centred Approaches Consultations for people from culturally & linguistically diverse backgrounds. Participants will be able to express their views in their own language. The consultations will assist the NSW Government in creating a person centred disability system. In a person centred system, the rights of people with disability, and their families and carers to make choices about their own lives are respected.

Consultations will be held from 10 to 20 October 2011 at a number of locations in Sydney. The consultation sessions will involve small focus group discussions with people with a disability, their families and carers. Sessions will be conducted in 17 community languages, and each will be run by a bilingual facilitator. There will also be one workshop (conducted in English) for service providers.

For more information including dates venues, languages and audience, click here.

Baby Sign Playtime!

A fun play session where parents and babies can learn baby signs through songs, stories and games. For babies with and without Down syndrome. $150 per term, with eight sessions lasting 45 minutes.

Now a funded service through Better Start Intervention  
 Term Four sessions now open for enrolment with classes in both Baulkham Hills (Weds 11am) and Rouse Hill (Fridays 11am).

For further information or enrolment, please contact Carolyn on 0431 514 787 or info@hillsnepean.com.au You can visit our website at www.babysignplaytime.com 

'Voice' and DS NSW News and Update (Spring 2011) online editions

The feature articles from the September 2011 issue of our journal Voice are now available online, along with the Spring 2011 issue of Down Syndrome NSW News and Update

The next issue of both publications will be published in December 2011.

Futures Alliance : western Sydney forum

The Futures Alliance  is a cooperative of community representatives with a single focus on removing boundaries and maximising community resources to deliver improved options for people with a disability who are ageing.

The Alliance has announced will be hosting a forum in western Sydney in November:

9am - 3pm  21st November 2011

Max Weber Library - Blacktown

Speakers, panel sessions and a round table to discuss current and proposed reforms that are important to people with a disability who are ageing.

All people who have an interest in this area are welcome to attend.

Speakers include:

• Professor Christine Bigby, Latrobe University
• Associate Professor Roger Stancliffe, University of Sydney
•  Paul Sadler, Chief Executive Officer Presbyterian Aged Care NSW & ACT 
•  Sue Findlay, HACC Transition Program Manager, Aged and Community Services Association of NSW and ACT

To register your interest please email futuresalliance@gmail.com

Further details will be available at: http://futuresalliance.blogspot.com

International World Down Syndrome Day as a United Nations Observance Day

Down Syndrome International has launched an "International Petition for the Adoption of World Down Syndrome Day as a United Nations Observance Day from 21 March 2012":

Since 2006, Down Syndrome International (DSi) has coordinated an annual observance known as World Down Syndrome Day (WDSD), held on 21 March (21/3) to signify the uniqueness of the triplication (trisomy) of chromosome 21 which causes the genetic condition Down syndrome.
The aim of this day is to raise awareness and understanding of a condition which affects approximately 1 in 800 births worldwide, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active participants in their communities and society. Activities and events which take place on this day typically showcase the abilities and accomplishments of persons with Down syndrome and encourage independence, self-advocacy and freedom for persons with Down syndrome to make their own choices.

WDSD is observed by persons with Down syndrome and those who live and work with them in over 60 countries around the world in a variety of different ways, but with a common purpose, and the website www.worlddownsyndromeday.org provides an international forum for sharing experiences. Further information on WDSD is available on the DSi website here.

A draft resolution will be presented to the 66th Session of the United Nations General Assembly in October 2011, proposing that WDSD become a United Nations Observance Day with effect from 2012. If successful, this will greatly assist to raise the international profile of WDSD and awareness of the condition.

We request that you CLICK HERE  before 16th October to sign the petition, which we will then send to the United Nations so that its Member States are made aware of the global public support for this important initiative.

For further information please contact Andrew Boys at DSi.

Joshua Gray - gold medal gymnast: video

Most children with Down syndrome have significantly low muscle tone (some babies are described as 'flopppy', and the ability of some children to 'go to jelly' is legendary) but that does not mean that they cannot develop great strength, and very effective gross motor skills. Muscle tone is not the same as muscle strength. In Special Olympics gymnastics at the highest levels, some of the best performing athletes are people with Down syndome, as we saw in the recent Special Olympics World Games in Greece. Their strength comes with dedicated training and expert coaching).

Joshua Gray from Sydney won 6  gold and one bronze medal in Gynastics (Level 1) in Athens, and had the time of his life. His whole family were there to cheer him on.  His older brother has posted this 5 minute video of Joshua's performances to You Tube.

We posted a link to Josh's post-Games interview with the Australian Jesish News here.

Now back at home, Josh is training to move up to Level 2 Gymnastics, with a demanding regime of gymnastics and fitness training five-six days a week. He has recently been appointed to a coaching position at his gym, supervising 7 - 9 year old gymnasts. On Sundays, Josh regularly trains at Olympic Park, then heads over to Kensington for a performance and drama class at NIDA. All of this fits around his job with an insurance company, and family life.

Congratulations Joshua, and very best wishes for your future.

Better Start Initiative: registered providers

Once you have registered  your child for funding through the Better Start for Children with Disability Inititiative, you will want to locate registered providers.  The Department of Families, Housing, Community Services and Indigenous Affairs (FAHCSIA) lists providers by State, giving contact details and fee schedules for each.  NSW listings are available online here.

Some service providers have asked us to tell our members about their services funded under the Better Start Initiative - we are providing that information here.

You are welcome to call our Parent Support Team on 02 9841 4401 if you have a query about how the Better Start Initiative can support families of children with Down syndrome.

Family Advocacy Making a Difference Workshops, November

Family and friends are often called upon to speak or act on behalf of people with disability. The formal term for speaking or acting on behalf of another person is advocacy. 

Making a Difference is a workshop specifically for families and friends of people with developmental disability who would like to gain and develop their advocacy skills. The workshop will explore what advocacy is and why it is needed. It will also provide you with practical hints and tips to increase your confidence and success when you speak or act on behalf of a person with disability.

8 November 2011
Wentworthville

9 November 2011
Hornsby

10 November 2011
Newcastle

11 November 2011

Gosford

Registrations close 31st October 2011

For enquiries, bookings or to obtain a flier, contact Rick Hansen or Karen Tippet at Family Advocacy on (02) 9869 0866 or 1800 620 588 or by email at workshops@family-advocacy.com

Postcards from Europe (1)

If you are a regular reader of our journal, Voice, you will recall twins Kit and Hannah from the cover of the March 2010 issue - they were about to embark on the adventure of big school. 

Now they are on another adventure - a holiday to Europe, during which they will turn seven. Their intrepid parents, Shelley and Phil have agreed to keep in touch with an occasional postcard to let us know how travelling with young twins (one of whom has Down syndrome) is going.  Here is the first instalment ... 

We are all having a blast on our holiday.  We are now in sunny Oxford.

London was great, something for everyone. Hannah loved Lady Diana's Memorial Playground the best, it was a great way to start our holiday as we were staying close to it.
It wasn't until we were well and truly in the air en route from Singapore to Heathrow that I began to panic about how two sleep deprived adults were going to cope with 2 six year olds who, while rested (at least they had a reasonable sleep on the plane) would no doubt be jet lagged at nine am when we couldn't access our apartment until two pm! The Kensington Gardens were a lifesaver.
I had been dreading the long flight, it really is a long way from home. It went very well though.
Getting around London (none of us have been before) was remarkably easy. I can see why people love the tube. I didn't realize just how many stairs this place involved nor how fast the locals move but Hannah has been a trooper and coped very well. Such good transport has meant we have been able to keep walking to and from places to a minimum for her and luckily her Dad's shoulders are at the ready.
\

It has been quite easy to factor in some down time for the kids. At the British Museum they saw school students sketching artifacts and both wanted to do that too. So that meant they could relax in one spot while Phil and I got to explore the whole space more.

The Tower of London was my favorite and while the stairs were a shocker for Hannah she kept going and even had enough energy for some races on the grassy moat.
A couple of days we have made sure that at least one of us could stay in the apartment with the kids for a couple of hours in the afternoon while they do some craft or watch CBeebies which they have fallen in love with.
I was a little worried with moving her on to new accommodation in Oxford but again the adjustment has been relatively smooth. The next shift is in a couple of days when we go to Paris on the Eurostar.

Regards,
Shelley

Smiles 4 a Day

The team previously behind the Special Children’s Christmas Party will host

Smiles 4 A Day

a spring carnival for children with special needs (up to 15 yrs) and their families.

© Pinipin | Dreamstime.com

jumping castles   sausage sizzle   face painting   roaming peformers   show bags   fairy floss,  and more ...

10:00 am - 2:00 pm  Saturday 12th November 2011    

Parramatta Stadium

 
Tickets to this event are FREE but are limited.  You must fill out a ticket request form, available from Priscilla at Down Syndrome NSW:  02 9841 4404 or email priscilla@dsansw.org.au

New ADHC booklet to support siblings

Ageing, Disability and Home Care (ADHC) has published a new resource aimed at supporting siblings of children with a disability.

Side by side: Growing up with a brother or a sister with a disability will specifically assist families in supporting and understanding the needs of brothers and sisters of a child with a disability.

Siblings of children and young people with a disability have needs over and above those of their peers, related to their different family circumstances.

When a family has a child with a disability, it's natural that a great deal of time and resources are focused on this child. This can make it difficult for parents as they try to juggle the needs of all family members. Sometimes siblings of children and young people with a disability can be overlooked, particularly if there are many demands on their parents' time and their needs don't seem so pressing.
Extended family and friends, school and the community can all provide support to a sibling and the whole family if they know how.

Side by side provides insight into sibling relationships and information, resources and contacts aimed at supporting the brothers and sisters of children with a disability.

Side by side is available from ADHC regional offices and online from the ADHC website.

Source: ADHC Connnections September 2011

Interview with actor, Chris Burke

It's Buddy Walk season in the US and Canada too.  As a Goodwill Ambassador for the National Down Syndrome Society in New York, actor Chris Burke gets to as many Buddy Walk events as he can, and is always in demand for photos and to talk with parents.  He was interviewed recently about living with Down syndrome by parenting magazine Modern Mom.

Chris Burke's TV show from the 90s, Life Goes On is available for members to borrow from our library, on DVD.   A biography, A Special Kind of Hero: the Chris Burke Story is also in the collection.
Email library@dsansw.org.au  to arrange a loan.

Other links to information about Chris Burke:
NDSS 'My Great Story' entry, Great Expectations
Wikipedia

Alzheimers NSW research - invitation to participate

Older people with Down syndrome are one of the groups identified as being at higher risk of developing Younger Onset Dementia. AlzNSW has asked us let our members, families and carers know about this important research study - people with Down syndrome and their carers are welcome to participate.

Research Project on Service and Support Requirements for People with Younger Onset Dementia and their Families

Are you or your family member living with a diagnosis of younger onset dementia?Would you like to participate in a valuable research project?

Alzheimer’s Australia NSW (AlzNSW) is conducting research with the Social Policy Research Centre at the University of NSW and UnitingCare Ageing for the NSW Government.
The research is about the experiences and needs of people with younger onset dementia and their families and understanding how these are different or unique compared to those of people with dementia at later ages.

'Younger onset dementia' is dementia which occurs before the age of 65 years.

The research aims to understand:
• Your experiences of accessing services and supports
• What your service and support needs are
• How services and supports can best meet those needs

How can you help?
We are looking for people with younger onset dementia and their family members/carers to interview.

We will ask you about:
• Diagnosis and living with younger onset dementia
• Your experiences with dementia services
• The types of support and assistance you need and would like to receive

Interviews will take no more than one hour and at a location convenient for you.
Participation in this research project is voluntary.  Your decision to participate or not will not affect your relationship with Alzheimer’s Australia NSW or any other services. 

All participants will be given a gift voucher to thank them for their time.
Your views are valuable and will be used to inform recommendations to government and service providers about improving younger onset dementia services and supports.
If you would like to participate or want to know more, please contact the Alzheimer’s Australia NSW researchers:

Jo-Ann Brown - Email jbrown@alznsw.asn.au or 02 8875 4636
Kylie Sait - Email ksait@alznsw.asn.au or 02 8875 4641

Download this information as a .pdf file to print.

________________________________________________

Alzheimer's Australia offers support, information, education and counselling. Contact the National Dementia Helpline on 1800 100 500.

The Growing older with Down syndrome pages on the Down Syndrome NSW website include information about Down sydnrome and dementia, and links to relevant services and supports.

Key Sign for Babies and Toddlers: parent workshop

This Down Syndrome NSW workshop for parents will assist day to day communication. Key signing is used with speech.

Presented by Aileen Ryan, Hands Can Talk

10.30am - 1.30pm, Friday 4th November, 2011
Northcott Function Centre
1 Fennell Street, North Parramatta

Parking available at the Parramatta Leagues Club, O’Connell St
Northcott Lane joins the car park and the Northcott Centre.

Cost:  $20.00 per person, including GST and a light lunch
Babies under 1 yr are welcome, but we are not able to provide childcare for other children.
Older children may attend as participants, $10/ child

Booking is essential  ~  please call Lynn or Judy at Down Syndrome NSW, on 9841 4401, or email support@dsansw.org.au

This workshop is our customary follow-up to Babies Day, which was held on 17th September.  Photos are available in our Facebook album, Babies' Day.

Wordless Wednesday

Foundations Forum: 'Towards a Better Life'

a 2-day workshop presented by John Armstrong

27th and 28th October, 2011

Blacktown

An introduction to Social Role Valorisation (SRV) and the possibilities it can create. Participants will explore:

• How individuals, services and society marginalise people
• Valued social roles as a potent catalyst for change and the foundation of a much better life for those we care about.

Designed for participants from a range of sectors (disability, education, aged care, mental health, youth, etc.) - support workers, teachers, co-ordinators, advocates, family members, people with disability.

Cost (including workshop package, morning tea, afternoon tea and lunch each day): $345 per person; $100 Concession

Registration is essential: for more information or for flier email
foundationsforum@yahoo.com.au or contact the workshop’s co-ordinator on 0405 071 577

Invitation to participate in reseach - adults in Hunter region

The Neuropsychiatry Service at Hunter New England Health invites people with Down syndrome aged 30 - 60 to participate in a research project.

They are examining this question:

An ‘Olfactory Stress Test’ in Down syndrome, others with an Intellectual Disability and non-affected individuals: can it help establish a cause for memory problems?

This is a research study. It is looking at the connection between smell and remembering.                                        

• We will test your sense of smell
• You will need to have a blood test
• We will take your blood pressure, weight and height
• We will ask your carer/ family some questions about you
• Your information will be kept private and locked up
• You need to be able to go to Newcastle for some of the tests

The study will be a good opportunity for adults with Down syndrome to have a baseline assessment (without charge) for future reference. Assessments will be kept on file, and will be made available to participants’ GPs as requested.

If you are interested to participate in the research project, please contact the Neuropsychiatry Service and speak to:

Tammie Taylor (02) 4033 5704 or Sally Finnie (02) 4033 5702

Or you can request further print information (supplied by the researchers) through the Down Syndrome NSW office, by contacting Miriam Parker on 9481 4407 or miriam@dsansw.org.au

4 Corners, Monday 26th September (ABC 1)

"St Ann's Secret", next week's episode of Four Corners will be chilling viewing, but promises to reveal deficiencies in the justice system that has not protected children with intellectual disabilities as we might have expected.

"St Ann's Secret", presented by Kerry O'Brien, goes to air on Monday 26th September at 8.30pm on ABC1. It is replayed on Tuesday 27th September at 11.35pm. It can also be seen on ABC News 24 Saturdays at 8.00pm, on ABC iview and at abc.net.au/4corners.

Wedding story - Santa Fe couple

Here is the link to a news article about the wedding of  Desiree Romero and Ryan Hanson, two people with Down syndrome in Santa Fe, New Mexico at which the priest drew an analogy between the values of Special Olympics and preparation for marriage (referred to in this post).

We wish them all the very best.

And this happy post is a little milestone for Keeping Up - our 1500th post. We started off slowly in 2007, but we hit our stride in 2008 and have blogged almost every day since, sometimes more than once a day to reach 1500 posts. Thanks for reading along - feel free to comment any time.  You might like to revisit our very first entry, I wish I'd said that ... it's still relevant and true.

St George Migrant Resource Centre: Parent Carer Programs

CALD Community Care Program events (St George and Sutherland)

School Holiday Family Fun Day
OUTING TO CALMSLEY HILL CITY FARM
Tuesday 27th September

CCCP would like to invite families from culturally and linguistically diverse background living in the St George & Sutherland area and caring for a child with a disability to come together for a day of fun and excitement.

Buses will be departing from the St George Migrant Resource Centre, 552 Princes Highway Rockdale at 10 am and returning at 3pm.

Please arrive half an hour prior to departure time.
COST: $20 per family which includes transport, admission and morning tea
Families can purchase lunch or bring a picnic lunch.
All children must be accompanied by a parent.
Places are limited so please call 9597 5455 today to reserve your spot!

* * * * * * * * * *

The CALD Community Care Program would like to invite Arabic parents of children with disabilities living in the St George & Sutherland Area to a FREE:

Arabic Parent Carers Lunch & Information Session

Meet other Carers and learn how respite services can support you. Guest speaker from the Benevolent Society Commonwealth Respite & Carelink Centre.

Free morning tea and lunch will be provided.
WHEN: Wednesday October 12thW
HERE: St George MRC 552 Princes Highway Rockdale
TIME: 10.30am to 1.00pm
To RSVP call Laila Beydoun on 9597 5455 (Mon - Wed)

During the session we will also provide carers with information on the upcoming ‘Parents as Case Coordinators’ Program

* * * * * * * * * *

Parents as Case Coordinators
This one-off introductory session will give you an opportunity to meet other parent carers; learn skills to help you access services for your child including goal setting, communication, assertiveness; and how to care for you as a parent.
The session will be facilitated in Arabic.

When: Wednesday October 19thTime: 10am to 1.00pm
Venue: St George Migrant Resource Centre 552 Princes Highway Rockdale
Contact details: Laila Beydoun 9597 5455 Mon - Wed