Friday, 31 October 2008
Click here for links to the petition and to various media reports and statements.
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.
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.
Thursday, 30 October 2008
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!
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:
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 email@example.com 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.
"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.
Wednesday, 29 October 2008
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.
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.
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 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.
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").
Sunday, 26 October 2008
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.
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.
Tuesday, 21 October 2008
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.
Monday, 20 October 2008
..... 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)
Sunday, 19 October 2008
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.
Thursday, 16 October 2008
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.
While the need to manage both supported accommodation and respite capacity effectively has been acknowledged, the language used in the drafts, the punitive nature and legality of some of the measures proposed, and the apparent lack of empathy for the very real needs of people with disabilities and their carers have been roundly criticized by a number of organisations that have published their responses and analyses.
Click here to read the Minister's initial reply to those who have submitted a response, which says in part:
"..... I am also taking notice of feedback received by the sector and wider community.
From my own meetings and conversations – and the response to the draft policy
– it is clear that some elements in the draft must be withdrawn or substantially
As a result, I have instructed the Department of Ageing, Disability and Home
Care to prepare new drafts of both policies as soon as possible."
Down Syndrome NSW response to the initial draft policies:
Click here for the NCOSS response to the initial draft policies.
Click here for Family Advocacy's analysis of the initial draft policies.
Opening the Doors: the hidden life of carers ".....acknowledge(s) the journey they have taken as carers and to confront with enthusiasm the wide range of emotions every carer has to deal with."
You can download an order form from here, or call Holdsworth Community Centre on 02 9302 3600
Tuesday, 14 October 2008
Down Syndrome Awareness Week is an opportunity to celebrate our love for our children, grandchildren, sisters, brother, nieces, nephews, cousins, friends, schoolmates and workmates who have Down syndrome.
It's an opportunity to help all of society better understand, appreciate and value people with Down syndrome as individuals, with individual needs, talents and abilities. Its also an opportunity to raise funds for Down Syndrome NSW to provide more services and greater support for all people and families affected by Down syndrome.
Down Syndrome Awareness Week commenced with the Inaugural Newcastle Buddy Walk and the second annual Buddy Walk in the Gong. It was a wonderful day at both Walks. Full Reports will be posted soon on the links below.
Buddy Walk is the big focus of this year's Awareness Week. It is the first ever national Down syndrome event held in Australia - a non-competitive, family friendly heart-warming event that the whole community can take part in. Walks are taking place in Perth, Adelaide, Brisbane, and other communities around the nation. In NSW, we will have a record 4 Walks this year in Newcastle, Wollongong, Sydney and Wagga.
This year, we celebrate with the theme AAA - 'Access All Areas'. We want to improve Down Syndrome NSW's services to all areas of NSW. We also want to make sure no area of family and community life is off-limits just because someone has Down syndrome. We want to increase opportunities for children and adults with Down syndrome to access all areas in society - whether opportunities in education, in sport & recreation, in employment, in accommodation - opportunities to fully participate in 'all areas' and to lead rich, diverse lives.
If you are unable to take part in any of the official events in the program below, you can still join in the celebrations in a number of ways:
* Send us your reports or stories about what Down Syndrome Awreness Week means to you: firstname.lastname@example.org
* Support a Buddy Walk Hero this year at http://heroes.buddywalk.org.au
* Make a donation in celebration of DS Awareness Week at https://payments.dsansw.org.au/donations or call 02 9683 1900
* Take part in our DS Awareness Week Raffle. Buy a book of 25 tickets for $50, or buy any number of individual tickets for $2 each. https://payments.dsansw.org.au/payments (please note number of tickets you are purchasing in 'comments' box. Online sales close at midnight on Sat, 18th October). Great prizes include: Conia 22" LCD television, 3 BridgeClimb double passes, 5 Citizen Watches, 3 CD gift packs from Warners Music, Sydney Theatre Company double pass, Studio photo shoot. For full updated prize list email email@example.com
A full program of events is below. However you mark this special week, I wish you all the very best and thank you for all the support you have given DS NSW and people with Down syndrome.
CEO - Down Syndrome NSW
Tel 02 9683 1900 Mob 0424 044 930
Down Syndrome Awareness Week 2008 Program
(12 October - 19 October)
Sunday, 12th October
Buddy Walk - Newcastle http://newcastle.buddywalk.org.au (support local Buddy Walk heroes - full reports posted soon)
Buddy Walk in the Gong http://gong.buddywalk.org.au (support local Buddy Walk heroes - full report posted soon)
Thursday 16th October
'The Christian Brothers' Special DS Awareness Week performance, starring Geoff Morrell Flyer.pdf
Fri 17th - Sun 19th October
Families Weekend 2008, in Dubbo
Sun 19th October
Buddy Walk - Wagga http://wagga.buddywalk.org.au
Buddy Walk - Sydney http://sydney.buddywalk.org.au
Monday, 13 October 2008
Here are a few photos early from Stuart Park in Wollongong....
Tuesday, 7 October 2008
Researchers at Stanford University (California), led by Prof Stephen Quake have announced a new prenatal diagnostic procedure that can detect extra chromosomes (such as the extra copy of chromosome 21 present in babies with Down syndrome), from a maternal blood sample. The test is much safer and less traumatic for both mothers and babies, and will be less costly.
The current study includes a small number of participants, and needs to be repeated in much larger numbers. The researchers expect this particular method to be available clinically within 2 - 3 years.
News of the study is reported locally by News Limited here. A BBC TV news item 6th OCtober 2008) about the new tests, and implications for families can be viewed here.
The Stanford University media release is available here, and the full text of the research report is available to download from this week's edition of the Proceedings of the National Academy of Science (early edition, October 6, 2008), here.
Reference to the research report:
H. Christina Fan, Yair J. Blumenfeld, Usha Chitkara, Louanne Hudgins, and Stephen R. Quake, Noninvasive diagnosis of fetal aneuploidy by shotgun sequencing DNA from maternal blood, PNAS published October 6, 2008, doi:10.1073/pnas.0808319105
Earlier posts about prenatal tesing:
- Life enriched by care (7 June, 2008)
- New UK research into informed choice (11th July 2008)
- Some of the challenges of prenatal testing (22nd July 2008)
- New website offers information at diagnosis of Down syndrome (5 August, 2008)
- UK article highlights lives lost through prenatal testing (21 September, 2008)
- UK article highlights lives lost through prenatal testing (21 September, 2008)