International Day of People with Disability: 2008 ambassadors announced

Twenty one extraordinary individuals were chosen from the arts, sports and business fields to support the 2008 Don't DIS my ABILITY campaign. They will be attending various events across NSW and spread the word that people with a disability can do anything.

They are an interesting and diverse bunch, and include two people who have intellectual disabilities:

• Michael Bartels, the Deputy Chairperson of the NSW Council for Intellectual Disability, and a cricket enthusiast
• and our very own Ruth Cromer, actor, advocate, office worker

Click here to read about all of them, see their photos (there's a very stylish new one of Ruth), and for links to details of this year's events.

International Day of People with Disability is celebrated each year on 3rd December

Choosing Naia: 10 years on

Amidst the interest generated by the nomination of Sarah Palin as the Republican Vice-Presidential candidate in the current US presidential election campaign, Tierney Temple Fairchild reflects in the Washington Post, about her own experience 10 years ago. She and her husband knew before her birth, that their daughter Naia had Down syndrome, and a congenital heart lesion.

This is the annotation from our library listing, on the book about Naia's birth, written by journalist Mitchell Zuckoff:

Choosing Naia: A family's journey, Zuckoff, Mitchell. Boston: Beacon Press, 2002
A powerful story based on an award-winning series of newspaper articles first published in the Boston Globe, about a young couple whose first child is diagnosed with a significant heart anomaly and with Down syndrome. The book traces their emotional and intellectual journey through making a decision to continue the pregnancy, and the first months of baby Naia's life.

DS NSW members can borrow the book from our library by contacting library@dsansw.org.au

All of the items held in the Library Collection are listed by subject category, here.

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

A statement has been prepared by clinicians and scientists involved in the care of people with Down syndrome, including input from members of the US based Down Syndrome Medical Interest Group and the advisory boards of several Down syndrome organisations, about the use of Prozac, Focalin, Ginkgo, in a protocol of "treatment" for Down syndrome.

Announcement: http://blogs.downsed.org/downsed/2008/10/statement-on-th.html

English translation: http://dx.doi.org/10.3104/statements.2106

Spanish translation: http://dx.doi.org/10.3104/statements.2108

French, German, Czech and Slovak translations are currently in preparation.

The statement includes a list of individual scientists and clinicians, and organisations that endorse it. Down Syndrome NSW has endorsed the statement.

The statement is freely reproducible as long as it is not altered.

Continuing media attention on Australian Immigration case

The Australian Department of Immigration's refusal of permanent residency to the family of Dr Bernhard Moeller, including his 13 year old son Lukas who has Down syndrome, continues to draw media attention in Australia and abroad.

The Australian reports that the Minister for Health, Nicola Roxon, has weighed into the debate, and will take it up with the Minister for Immigration, Chris Evans.

Some examples of today's Australian media reports:

• A town's plea: think again on our doctor (The Age, Melbourne)
• Chorus of demands to let doctor Bernhard Moeller stay (The Australian)

Some examples of international reports:

• Doctor barred from Australia because of Down syndrome son (The Telegraph, London)
• Australia snubs doc and Down Syndrome son (The Local, Hamburg)
• Australia: No residency for boy with Down syndrome (Associated Press)

Down Syndrome Victoria petition to the Department of Immigration

Down Syndrome Victoria has set up an on-line petition to the Department of Immigration, indicating the public response to refusal of the Moeller family's application for permanent residence (see previous entry).

Click here for links to the petition and to various media reports and statements.

Rural doctor denied permanent residency ..... because his son has Down syndrome!

Down Syndrome NSW regularly receives enquiries about immigration issues, where families applying to immigrate are refused because a family member has Down syndrome. While we understand the concern about costs to the Australian community, the Department of Immigration's rulings and reasoning are often difficult to fathom.

The cost estimates given to families bear little relation to the actual "cost to the community" of Australian citizens who have Down syndrome - most Australian families could only dream of such levels of financial support. Some families have been treated shamefully by our immigration system, which is apparently exempt from the discrimination laws that protect Australian citizens.

Even when a child with Down syndrome has been born in Australia, and his parents meet immigration criteria, there have been cases where the application has been denied because the child has Down syndrome. Some cases have been successful on appeal.

Now a rural Victorian physician's family, recruited from Germany, is caught in this bureaucratic trap. Click here for The Australian's report, including interviews with the Moeller family, Catherine McAlpine, CEO of Down Syndrome Victoria, the Department of Immigration and Dr Bernhard Moeller's employer.

Catherine McAlpine: It is outrageous that in the same year the Australian Government ratified the UN Convention on the Rights of People with Disabilities, it is effectively stripping this young man of his human rights.

Discrimination and humanity aside, don't we have a well recognised crisis in recruiting and keeping medical professionals in rural communities, and are we not spending very large amounts of money to solve it?

Click here for further information about the experiences of families who have a member with Down syndrome applying to immigrate to Australia.

"Living with Down Syndrome" - Chinese translation funded

The Australian Chinese Charity Foundation has recently awarded Down Syndrome NSW a grant to translate the book Living with Down Syndrome into Chinese. The book is the very popular introduction to the comprehensive series of information packages, Down Syndrome: Issues and Information, published by Down Syndrome Education International, based in Portsmouth, UK

Many families of newborns with Down syndrome tell us that Living with Down Syndrome is an important early resource for them, because it helps to answer their many concerns about their child's future - then lets them get on with the present. In response, Down Syndrome NSW has, with the permission of DownsEd International had the book translated into Vietnamese and Arabic. The Chinese translation will be available by early 2009, and will be posted to both our website as a free download, and to Down Syndrome International's website (where Spanish and Norwegian translations are also available).

Copies will be made available to Chinese speaking families of newborns as part of their New Parent Information Kit, and distributed freely to appropriate community based services.

Down Syndrome NSW is developing a portfolio of translated material about Down syndrome in the three most commonly requested languages after English in multicultural NSW: Vietnamese, Arabic and Chinese, working with local families and professionals, and with others around the world. The already completed resources are available here, along with a directory of links to other resources in these three languages.

10th World Down Syndrome Congress: Dublin, August 2009

Registration for the 10th World Down Syndrome Congress in Dublin, in August 2009 is now open. Discounts are available for early registration.

Accommodation recommendations and other information about the Congress is now available.

Visit the Congress website for further details - www.wdsc2009.com

If you are planning to attend the Congress, and do not wish to include the UK on your itinerary, consider travel routes (e.g. Dublin via Abu Dhabi) that avoid Heathrow!

Book Review: Helping Children with Down Syndrome Communicate Better:

A paper, book or DVD by Libby Kumin is always much anticipated by our staff - we know that families will gain a great deal from the highly accessible work of this renowned speech and language clinician and researcher. She is, of course, an excellent communicator!

Her new book is no exception. Kathi Beck, our librarian has reviewed it for the Summer 2008 - 2009 issue of our Newsletter, which will be released in December. Here is a preview:

Helping Children with Down Syndrome Communicate Better: Speech and Language Skills for Ages 6-14 by Libby Kumin, Woodbine House, 2008.

To be unable to express your thoughts or feelings or to be unable to participate fully in a conversation is a sad and frustrating thing. Parents and teachers of children with Down Syndrome work to ensure that our children’s speech and language is as good as it can be, but this is often difficult due to lack of access to speech therapists or lack of understanding about what can be done. This becomes more difficult as the child gets older and more complex language skills are needed. Libby Kumin’s new book Helping Children with Down Syndrome Communicate Better: Speech and Language Skills for Ages 6-14, provides a great resource for parents, teachers and therapists to address speech, language and communication difficulties.

As in her DVD, What Did You Say? (2006), Kumin describes the different areas of speech and communication that are problematic for people with Down Syndrome and possible reasons for these problems. In her new book, Kumin also discusses these areas, but also includes other language difficulties, the particular communication skills needed at school and those needed at home and in the community.

There is a big section on speech and language evaluation with examples of reports and therapy plans. In addition to discussing what therapists focus on and therapy activities, Kumin provides many activities that can be done whilst playing games or just in the course of doing the usual chores and tasks in the day. She also suggests titles of books that can be used to work on each skill. For example, she mentions using We’re Going on a Bear Hunt for preposition practice. Giraffes Can’t Dance by Giles Andreae is used for teaching and practicing the use of negatives.

And there are other lists of books for Wh questions and lists for sound and articulation production. There is a section on how to make homemade games to focus on various skills.

Kumin discusses what language is required at school and how teachers can help children communicate better. She includes a chapter on communication and social skills at home and in the community. Teaching conversation skills is examined. She discusses how to know whether your child needs augmentative and alternative communication(AAC) which includes gestures, signing, picture cards, communication boards and electronic communication devices.

This is a very comprehensive book about communication for this age group. It is easy to pick small bits out of it or read through all facets. It is written in the US and hence often refers to US laws about services that children are entitled to and also refers to the US education system. However, these snippets are easy to ignore and do not detract from the other outstanding material contained in the book.

I like the way Kumin emphasises ways to help communication as part of daily life. She makes clear that communication skills can be improved throughout a person’s life and that because speech is difficult for people with Down Syndrome, we should remember that their speech does not indicate their abilities, thoughts or feelings. We need to give them every chance to communicate.

I highly recommend this practical and comprehensive book to anyone who wants to work on or understand speech, language and communication difficulties in school-age children with Down syndrome or even just understand speech evaluations and therapy.

To borrow this book from the DS NSW library, email library@dsansw.org.au or call the office on (02) 9683 4333. Borrowing is available to DS NSW members only.

Many other popular Woodbine House titles, from their Down Syndrome list are also held in our collection. Click here for annotated lists of the whole collection categorised by subject.

Woodbine House publishes an extensive list of titles related to a range of disabilities.

National Disability Strategy: discussion paper open for comment

The Australian Government is developing a National Disability Strategy "..... to address the barriers that are faced by Australians with disability and promote social inclusion", to be released by mid-2009.

"The Strategy will be an important mechanism in ensuring the principles underpinning the United Nations Convention on the Rights of Persons with Disabilities, recently ratified by the government, are integrated into policies and programs affecting people with disability, their families and carers." (Overview of the Strategy, www.fahcsia.gov.au/internet/facsinternet.nsf/disabilities/nds.htm

A discussion paper has been released to facilitate consultation - submissions are invited, and public consultations are being held around the country, including in Sydney on 5th November, and in Canberra on 26th November.

Click here for further information about the process, to download a copy of the discussion paper and for the consultation dates.

The National Council for Intellectual Disability (the peak national body) is writing a response to the discussion paper, under the areas of Health, Education, Work, and Supported Living, and is making its material available as it is developed, through its website: www.ncid.org.au

The Health paper, and a background paper developed jointly by National and NSW Councils for Intellectual Disability and the Australian Association of Developmental Disability Medicine is available online now.

New funding for services for people with disabilities and their carers in NSW

Recent talk about cuts to Government services being necesary to balance the State budget has caused concern for families, but some increased funding for services for both children and adults with disabilities has been announced in the last few weeks..

New Aboriginal carers’ guide launched

Media release from the Minister for Disability Services, Paul Lynch, 27 October 2008:

The NSW Government has launched a new carers’ guide with tips on accessing respite services and carer support groups.

Launching the Aboriginal Carers Support Guide at Wyanga Aboriginal Aged Care in Redfern, Sydney, Mr Lynch said caring could be a rewarding experience but at times a lonely journey.

“The guide focuses on the health and well-being of Aboriginal carers,” Mr Lynch said.

“It provides Aboriginal carers with information on improving their physical and emotional well-being so they can continue caring and lead a fulfilling life,” he said.

“Carers need caring for too – taking a break and having some time out is important,” Mr Lynch said.

“The NSW Government understands the importance of respite – which is giving carers a break,” he said.

Mr Lynch said about 750,000 people in New South Wales provided care for family members, friends or neighbours.

“But Many Aboriginal carers don’t identify themselves as carers and don’t have access to information about the types of support available to them,” he said.

Mr Lynch paid tribute to the work of Wyanga Aboriginal Aged Care.

“Its strong connections with the Aboriginal community across New South Wales and its strong sense of family and community is the reason for its success in providing quality care for elders in their own homes and the community,” he said.

Aboriginal Home and Community Care (HACC) services receive $22 million in funding, with an additional $1.7 million to be dedicated in 2008-09.

“Funding through HACC provides a range of important services to help older Australians and those with disabilities remain independent and live at home,” Mr Lynch said.

No fee policy for NSW Government respite centres

Media release from the Minister for Disability Services, Paul Lynch, 23 October 2008:

The NSW Government has introduced a no-fees policy for all respite centres operated by the Department of Ageing, Disability and Home Care.

Minister for Ageing and Disability Services Paul Lynch said the Rees Government had taken immediate action to address community concerns about the system.

“Since becoming Minister for Disability Services last month, I have been made aware of inconsistent practices when it comes to charging respite fees,” he said.

“It is current policy not to charge people with a disability aged under 16 years respite fees,” Mr Lynch said.

“The Rees Government is extending that policy to apply to all Department-operated centre-based respite services,” he said.

“People caring for a family member with a disability have additional costs to pay for,” Mr Lynch said.

“If you are on a pension and need respite care, you can be charged around $25 per night – and that is a significant impact on your budget,” he said.

“The Rees Government is aware of the financial stresses many families are battling with in the current economic climate,” Mr Lynch said.

“The no-fees policy for planned respite stays at the Department’s facilities will provide relief for those carers and families of people with a disability,” he said.

Carers NSW CEO Elena Katrakis welcomed the announcement.

“It will provide welcome relief for many carers who are experiencing financial hardship,” she said.

Mr Lynch said the new policy addressed anomalies that resulted from past restructures of the delivery of disability services.

Extended Family Support Program

Another new funding announcement from DADHC is for the Extended Family Support Program. In a media release dated 13th October, the Minister for Disability Services, Paul Lynch announced the $5million program:

Families of children with challenging behaviours who are experiencing significant stress and at risk of relinquishing care to manage day-to-day demands will receive $5 million in extra help from the NSW Government.

Minister for Disability Services Paul Lynch said the extra $5 million would help at least 100 families, depending on the level of support they needed.

“The funding provides services tailored to a family’s individual circumstances so they can maintain the care of their child or young person,” Mr Lynch said.

“Caring for a child with challenging behaviours or high support needs, places enormous stress on a family and sometimes they find it extremely difficult to cope,” he said.

The funding would allow case managers to extend support to families with a high need and in some cases provide out of home placements.

Extended support could also include access to:

• extra regular respite or activities that provided a respite effect
• additional in-home support
• additional, or more intensive, behaviour management support
• problem-solving around school issues

Click here for the full text of the Minister's media release, and here for details of the funding allocated to particular regions.

Early Start Initiative: additional Early Childhood Intervention funding

The NSW Department of Ageing, Disability and Home Care has announced additional funding for early childhood intervention services that some families of children with Down syndrome might access:

Early Start initiative will

• provide an extra $3 million to expand early childhood intervention services to a further 375 young children who have a disability
• comprise an initial $2 million this financial year under the EarlyStart initiative to provide support for a further 250 children aged up to six years
• includes 30 places for Aboriginal children and 20 places as part of a project to trial arrangements for more individualised support
• has a preventative focus aimed at promoting the well-being and resilience of children with a disability
• will focus on priority locations and population groups across the State where the most need has been identified
• will be managed by experienced not-for-profit organisations that have the capacity to deliver quality early childhood intervention support
• will provide another $1 million in 2010-2011 for places for a further 125 children under Early Start.

Click here for the full text of the Minister's media release (24/09/2008) on the Early Start Initiative. Media releases on the breakdown of Early Start funding for particular regions are available here

* * * * * * * * * *

If you need more detailed information about any State Government funded service in your area, do not hestitate to contact your State Member of Parliament, listed here (choose "sort by name" or "sort by electorate").

Two major websites revised and relaunched: well worth book-marking

The Down's Syndrome Association in London has recently redesigned and relaunched its website: www.downs-syndrome.org.uk


The new site provides easier navigation and more news. The information and resources sections of this website provide a wealth of downloads on a range of topics. Most, apart from information about social security benefits are applicable and/or adaptable internationally. Fabulous photos.


The National Down Syndrome Society, located in New York has also recently re-launched an updated its website: www.ndss.org

Again, there is some information that is only relevant to the USA, and a good deal that is universally useful. Includes good pages on research, including descriptions of the features of clinical trials.

Marathon man gets others with DS running

Most of us will never even contemplate running a marathon race, and few would expect anyone with Down syndrome to do so.

Simon Beresford (41) has run the London Marathon twice, and has recently received an award in Germany where his efforts have encouraged other people with Down syndrome to form a running club.

His local newspaper in England, the Lichfield Mercury, reports on his Golden Chromosome Award here, and includes the thanks of Team 21 runners for inspiring them. There's a great photo of Simon too.

News from DownsEd: US Centre to open in 2009, and new UK reading instruction research

Down Syndrome Education USA has announced plans for the first Down Syndrome Education and Research Center based in the USA. Building on successful, evidence-based programs, the new center will offer education programs and resources to children with Down syndrome, their families and education professionals across the USA. The center will also conduct and sponsor scientific research focused on practical ways to support cognitive development, language, literacy and math teaching for young people who have Down syndrome.

The new center will be a joint venture with the Down Syndrome Foundation of Orange County and will accommodate expansion of the Foundation’s highly successful Learning Program. The center will be based in Orange County, California and is expected to open in early 2009.

Details at: http://blogs.downsed.org/downsedusa/

Down Syndrome Education International has been awarded a grant to test an adapted reading and language teaching programme for children who have Down syndrome. The funding from the UK Big Lottery Fund will enable the charity, working with researchers at the Centre for Reading and Language at the University of York, to assess the impact of targeted teaching approaches in practice.

The UK Big Lottery Fund has awarded Down Syndrome Education International a £481,000 ($US900,000; $A1.23M) grant to conduct a multicentre, randomised controlled trial of an adapted reading and language teaching programme and (assuming the intervention is found to be effective) to develop a teachers' manual and training programme to encourage widespread adoption in schools. Including the dissemination phase, the project will last four years.

Prof Sue Buckley,m the Director of Science and Research at Down Syndrome Education International, is quoted as saying:

"This is a vitally important piece of research that promises to help many thousands of young people with Down syndrome. ....... we will trial approaches to reading and language instruction that are tailored to meet the specific needs of children who have Down syndrome. By carefully evaluating these approaches, we hope to clearly show that they are both highly effective and easy to implement. Language and literacy skills are so important for living and learning. We know that young people who have Down syndrome can achieve many things that were once thought not possible when given the right opportunities."

Details at: http://blogs.downsed.org/downsed/

2008 UK Down Syndrome Research Forum: Down Syndrome Education International has hosted the annual meeting of the UK Down Syndrome Research Forum at The Sarah Duffen Centre in Portsmouth. Researchers from around the UK and elsewhere in Europe met over two days to discuss ongoing research projects and future directions. More information here.

Why Buddy Walk works .....

Buddy Walks were first held in the US around 1995, and have spread around the world. They began as an awareness activity - getting people with Down syndrome out in their own communities, with families and friends, making a gentle statement about living life like everyone else. It gives others an opportunity to stand up and be counted as advocates, just by their presence. And that is a good enough reason to hold one.

But wait, there's more. We have fun, we have a picnic, we get together with old friends, we meet new people, and sometimes we even raise some funds.

It can be whatever you want it to be on the day. Come for an hour or for the day.... bring lunch or try the sausage sizzle - or both! ..... bring the whole tribe, or come on your own, you'll soon meet up with others ..... join in all the games, or sit in the shade and catch the breeze ..... it's an easy, fun, relaxed day.

And you never know what people will notice, or what each individual will gain from the experience. Here are some overheard responses and stories from Sunday's Buddy Walk-Australia in Sydney .....

From various UP! Clubbers:

..... let’s go mingle and dance .....

..... we' re happy just chilling .....

..... Brooke, I did it, I finished the walk .....

..... its free, the Coke zero!.....

I don’t think I’ve ever seen the UP! Clubbers so relaxed and content! There was a great sense of achievement at Milson Park, the guys were proud about their contribution and the ultimate message of the day and happy just ‘relaxing in the park, talking to mates, eating a sausage sizzle, and soaking up the sun with friends (from Brooke, Up! Club Coordinator)

Slurpee machine, what else can you ask for!??

From other families:

Emily (7) has been on each of the three Sydney Buddy Walks, and this year she walked all the way by herself! Her Mum was very proud - and that's really something to look forward to, in future years, for parents who yesterday were struggling to carry their children by various methods.

During the picnic, the mother of a 2 yr old approached another Mum who has written occasionally to the Newsletter, to let us know how Ethan (now 10 ) is progressing. Ethan's Mum was thrilled to hear that her letters had provided inspiration and hope for another child's well being, and for his family. We know that happens very often, but to have it acknowledged personally is a special moment.

We had a wonderful day yesterday at the Buddy Walk in Sydney. We were tired in the evening though!!

We really did have a great day and I thought all the volunteers did a wonderful job directing us over the bridge and through the streets etc. We met up with some friends plus met some new people which is always nice. Jack did pretty well (considering last year we had him in the pram!) although he did like it on Dad’s shoulders!!

Buddy Walk-Australia, Sydney 2008: another very good day

Thank you to everyone who joined us today (Sunday 19th October) for Buddy Walk-Australia 2008, in Sydney. We had glorious sunshine, a leisurely walk across the Harbour Bridge to a beautiful waterside park in Kirribilli, and a gentle sea breeze .... perfect!

We don't know the exact numbers yet, but certainly more than 500 people helped to celebrate the lives of people with Down syndrome.

Congratulations to Priscilla Leong (DS NSW Events and Marketing Coordinator), who put months of planning into the Walk and her wonderful teams of volunteers, and to Tara Grech (of 'everyone can dance') who co-ordinated the picnic site. It all seemed effortless to those of us there as participants - but we know it wasn't!
Our thanks to

• Buddy Walk Patron, Virginia Judge MP, Minister for Fair Trading & Citizenship, who cut the ribbon to start the Walk at Circular Quay West


• all of the walkers - friends and families. You made the day!


• those who provided the sausage sizzle, juice stand, coffee van, music (wasn't Tegan Rogers great?), dancing, and the fabulous amenities in this lovely location


• the army pf volunteers who marshalled and guided, set up, kept things running, painted faces, ran games, sold raffle tickets, then packed and cleaned up


• and of course, our very grateful thanks to everyone who bought raffle tickets, organised sponsorships, and made donations - your generosity is much appreciated


• thank you all for cleaning up after your own group - it kept the final clean-up manageable, and left the park looking ready for its next event.

If you have photos from the Sydney, Wollongong, Newcastle or Wagga Wagga Buddy Walks, that you are willing to share, please email them to info@dsansw.org.au or to priscilla@dsansw.org.au

Economic Security Package: one-off payments for Disability Support Pensioners and carers

The Federal Government's announcement of the Economic Security Package includes one- off payments of $1400 to single people receiving the Disability Support Pension and Carer Payment ($2,100 for couples), and $1,000 payments for those receiving Carer Allowance (for each person being cared for).

The payments are scheduled to be made from 8th December. The payments will provide welcome financial relief for people receiving Disability Support Pensions and carer benefits while the Government's Review of Pensions continues, with recommendations due to be released early in 2009.

You do not have to contact Centrelink, or register in any way - the payments will be made automatically, into the account you have nominated with Centrelink for regular payments.

Details have been posted here on the Centrelink website

The joint media release from the Prime Minister and Treasurer is here

The Minister for Human Services's media release is here.