News report: "Mother branded mentally ill after complaint"

Louise Hall

Sydney Morning Herald, September 30, 2010

.A mother who raised serious concerns about the care of her intellectually disabled daughter at a group home was taken to the Guardianship Tribunal where the state government tried to strip her parental rights.

Documents obtained under freedom of information show disability bureaucrats tried to portray the mother as mentally ill and unfit to make decisions about her daughter, then 19.

The mother, staff at her daughter's special school and her psychiatrist had made complaints that Lifestyle Solutions, the government-funded non-profit organisation that ran the Sutherland Shire group home, was failing to follow treatment plans, had untrained and inexperienced staff, and used psychotropic medication on residents without consent.

''As a parent you're fearful of making complaints and you can see what happened to me once I did,'' the mother said. ''I was viewed as a nuisance and troublemaker because I asked questions about my daughter's care ....."   Read on, and learn about the Guardianship Tribunal's decision here.

Can we get married? On ABC2 iView

A touching (UK) film which follows a young couple with Down syndrome, as they begin to plan their wedding.

Broadcast last night (29th Sept) on ABC2, it will be on iView until 13th October.

.ABC iView - Can We Get Married? (just under 40 minutes)

1/10/10 Disability and Culture on Can we get married?

Library Thursdays: Bereavement resources

The library has many resources to help people with Down syndrome and their families through various life events. One area that can be a concern is explaining death and dealing with grief. The library has 3 books from the Books Beyond Words series dealing with this issue. When Somebody Dies, When Dad Died and When Mum Died.

Other resources in the library include: What Dead Mean: How to help children cope with death is a book to be used with an adult and child to help work through the issues associated with death and grief through drawing and writing. One page has more complex writing and the opposite has simple text. Let's Talk about Death: a booklet about deaths and funerals for adults who have a learning disability, a booklet put out by Down's Syndrome Scotland is a simple clear resource.

There are also some good resources online. The UK Down's Syndrome Association has a paper on how people with Down syndrome may experience grief and how to help them through this experience. The New Zealand Down Syndrome Association has written an article based on this paper and included some families' experience in a 2004 newsletter found here.

There are other books and resources for other challenges such as hospital visits, going to the dentist, and going to court. Check the library pages at resources for people with Down syndrome and Children's feelings resources.

If you'd like to borrow any of these or would like some help finding other resources or borrowing them, just email or call us.

Send a 'herogram' to our swimmers

Good luck Team Australia, competing at the
5th International Down Syndrome Swimming Championships in Taiwan
1 - 8 October 2010

To send a 'herogram', with your personal good wishes, the address is: teamaustralia2010@hotmail.com

Herograms received before 1st October will be printed out by the coaches and some read out to swimmers each day before the competition - and they LOVE to hear from supporters!

Wordless Wednesday

Buddy Walk - Australia 2010: ‘We’ve come a long way, baby’

Fundraising and theme for Buddy Walk 2010
‘We’ve come a long way, baby’
Celebrating 30 years

The Down Syndrome Association of NSW was formed 30 years ago by a group of parents of babies and young children with Down syndrome. Without any government funding, these remarkable parents built an organisation that has, along with breakthroughs in early intervention services, provided expectations and opportunities for babies, children and young adults, far greater than in any previous generation.

Buddy Walks help us celebrate the lives of those with Down syndrome and their families. In 2009,
supported by our theme of ‘It’s a G.A.S!’(Grandparents and Siblings) our Buddy Walk Heroes helped us raise over $40,000 to improve access to information and resources for all communities across NSW, improve the broader community understanding of Down syndrome and help build a more inclusive and supportive society.

This year we celebrate the 30th year anniversary of Down Syndrome NSW, and the achievements of people with Down Syndrome and their families, plus recognise the great steps forward made in the last
30 years.  Please join us.

Download a comprehensive brochure here.

A comprehensive Buddy Walk Event Kit is available to download for these 2010 NSW Walks:

Newcastle (Sunday 17th October, 2010):  download event kit here

Click here to download the Buddy Walk - Newcastle 2010 poster

Sydney (Sunday 24th October, 2010): download event kit here

Online registration and sponsorship pages are available for all events in NSW:  click here for links.

Impact: special issue on disability and sexuality

Impact magazine, published by the university of Minnesota, has recently published a feature issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, that is available to read online or for free download. 

A comprehensive range of topics is covered, including input from people with disabilities and their families.  Both Dave Hingsburger and Terri Coewhoven, both authors of popular works in our library have contributed.

Click here to go to the .html page to read the full contents list and link to individual articles.

Click here to download the complete issue as a .pdf file. 

IMPACT
Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities 
Published by the Institute on Community Integration (UCEDD) and the Research and Training Center on Community Living, College of Education and Human Development, University of Minnesota
• Volume 23 • Number 2 • Spring/Summer 2010

New publications for families of pre-teens - young adults

Two new publications have been released by Ageing, Disability and Home Care (ADHC), NSW Human Services Department, designed to provide information and support to families of people with disabilities going through two times of transition:

Making the Move - is for families of children moving from primary school to high school

Stepping Out - is for families of young adults transitioning out of high school

Both publications are available online, and print copies are being distributed through NSW schools - ask your school for your copy.

Both publications are intitiative of the ADHC Stronger Together program.

Baptist Community Services new respite program: northern Sydney suburbs

Saturday Activities For Children with Special Needs

BCS is offering a new exciting Saturday Activities Program as a part of its disability respite services to the parents and carers of children with disabilities in the Northern Sydney region.

Program Name: Saturday Activities
Age Group: 5-8 (Puggles) and 8-12 (Echidnas)
Disability: Mild to Moderate
Eligibility: Assessment and Trial Outings
When: During the School Terms
Frequency: One Saturday every fortnight
Format: Outings and In-Centre Activities

For an Application Pack contact:
Gaye Terzioglu-Booth - Co-ordinator
E-Mail: gterzioglu-booth@bcs.org.au
Mobile: 0438 276 338
Office: 9346 1429
Fax: 9346 1204

Knowing your advocates

It's easy to assume that people with intellectual disability are mostly unaware of advocacy efforts occurring on their behalf, but the growing self-advocacy movement, and the inclusion of people with intellectual disability in decisions made 'for'  and 'about' them is changing both the perception and the reality of that awareness.  Dave Hingsburger's blog post today, "Hand on Shoulder" illustrates the point very nicely.

Irish TV animation includes Punky, a character with Down syndrome

The Irish Evening Herald reports that a new children's animated TV series in production includes as a main character, a little girl with Down syndrome:

The new RTE series Punky, which will be aimed at pre-school children, features a six-year-old girl who lives with her family, and encounters daily adventures like any other child.


Gerard O'Rourke, from production company Monster Animation, says Punky is a playful little girl who overcomes many daily challenges, but she is slightly differently to other children.

Already international TV companies from the United States, UK, and Australia are showing keen interest. ... read more.

Employment opportunity: Print 35

A great opportunity! For people with mild intellectual disabilities

JewishCare, Print 35: SUPPORTED EMPLOYMENT

1 or 2 days per week

Print 35 prints cards, invitations and serviettes and makes a range of beautiful gift baskets.

You will be involved in:

•   printing invitations, cards and serviettes
•   sticking double-sided sticky tape
•   folding cards, sticking labels and
•   packaging serviettes in cellophane bags

You will be working in a friendly environment in a small team. Training will be provided.

For further information and application packs, contact:
Elena Tsetlin on 8302 0231 e.tsetlin@jewishcare.com.au

http://www.jewishcare.com.au/
Go to “Employment Services” and Print 35

New web pages: information on growing older with Down syndrome; Down syndrome and dementia

We have added new pages to our website providing information on people with Down syndrome as they grow older, and might show signs of dementia. Click here to go the Growing older with Down syndrome home page, and follow the links to the other pages.  Or you can go to the Information menu, and select ‘Growing older with Down syndrome’ - the last menu is this list.

• 
  
  Growing Older with Down Syndrome home page
• 
  
  Younger Onset Dementia (YOD)
• Down syndrome and Alzheimer's disease - guidelines booklet, 2009
• Library resources on growing older with Down syndrome and dementia
• Growing Older with Down Syndrome newsheet - available online and in print
• Services and supports 
• Dementia education and information events

The information from these pages is also available in print from the Down Syndrome NSW office.

The  Growing Older with Down Syndrome web pages are a component of the Growing Older with Down Syndrome Project - an Australian Government funded project helping Australians with dementia and their carers.

Library Thursdays: Adult Living series from Down Syndrome Education International

Many of the Issues and Information books from Down Syndrome Education International (previously known as DownsEd) are free to read on their web pages. But the Adult Living series (edited by Roy Brown) of the Issues and Information books are not available there yet and many are not aware of them. Professor Trevor Parmenter (former director of the Centre for Disability Studies, University of Sydney) has reviewed the series here.

The series is available from the library and includes:

Life for adults with Down syndrome: an overview

Information communication technology for adults with Down syndrome

Advocacy for adults with Down syndrome

Community and independent living for adults with Down syndrome

Spiritual well-being for adults with Down syndrome

Drama and the arts for adults with Down syndrome: benefits, options and resources

International and cultural aspects of Down syndrome

Transition to employment

Recreation and adults with Down syndrome

Families of adults with Down syndrome

People with Down syndrome and the law: an Australian perspective

Inclusive post secondary (tertiary) education for adults with Down syndrome and other developmental disabilities

If you would like to borrow any of these or anything else, just call or email.

Also of interest on the Down Syndrome Education International for their Down Syndrome Research and Practice publication is a review of various research on how best to teach reading to children with Down syndrome, Reading interventions for children with Down syndrome by Kelly Burgoyne and a paper on research done in New Zealand on Literacy environments for children with Down syndrome: What's happening at home?

Communication Skills for Life: a whole week of posts on infant feeding challenges and strategies

Jennifer at Communication Skills for Life is often asked for help with feeding infants and children with Down syndrome, in her work as a speech and language pathologist (slp). She is blogging about some of the questions and her answers, for all of this week.

A speech and language pathologist is just the right professional to consult about such matters - they address many concerns about eating, swallowing, food textures, infant feeding, toddler mealtimes, and eating and swallowing problems at all ages, in addition to their work on speech and communication.

NY Times discussion on Prenatal testing and whether it is harder to have a child with Down syndrome

Amy Julia Becker responded this week in the New York Times Magazine to the reaction to her piece about prenatal testing. She wrote as the mother of a child with Down syndrome, Is it harder to have a child with Down syndrome? Although she admits that her daughter is only 4 1/2 but she eloquently describes what she thinks are the advantages to having a child with Down syndrome.

1000 posts

We're quietly celebrating our 1,000th blog post today (this is 1,001), and an accelerating rise to  more than 40,000 visits since we starting counting them just under two years ago.  The feedback has been positive, but we'd like to reach a larger readership, so help us out by sending the address to your friends, family and the professionals you work with who might be interested.

Your suggestions are welcome. Thanks for reading.

Wordless Wednesday

Darwin's syndrome

Harry t21 is a UK family's blog about life with their little boy who has Down syndrome.  A recent post draws attention to speculation that Charles Darwin (of Theory of Evolution fame) and his wife Emma's tenth and last child possibly had Down syndrome.  Charles Waring Darwin was born in 1857, before John Langon Down's paper identifying the common features of the syndrome was published (1866),  and just over 100 years before trisomy 21 was identified as the underlying chromosomal cause (1959). He sadly died at 19 months, from scarlet fever, so it was not explicitly identified at the time.

Randal Keynes's recently-republished biography of Charles Darwin, Creation - the true story of Charles Darwin (2009, John Murray, originally published 2001) discusses the possibility briefly, and includes a short passage, sensitively written by Darwin, indicating that he had noticed some features consistent with what we now know about Down syndrome, and a grainy photograph of Emma with the baby Charles, taken by an older son. The photo is included in the Harry t21 post. 

An interesting historical note.

New research report on ageing, retirement amongst people working in Australian Disability Enterprises

The Australian Government's Department of Families, Housing, Community Services and Indigenous Affairs has published Occasional Paper Number 27:

Ageing and Australian Disability Enterprises, September 2010
by Shannon McDermott, Robyn Edwards, David Abelló and Ilan Katz

This report examines the ageing of people with disability in the supported employment sector (Australian Disability Enterprises), specifically:

•  social and economic issues facing the Australian Disability Enterprise industry and supported employees
•  opportunities and challenges for ageing employees with disability
•  ability of the current service delivery system to meet the needs of ageing workers.

The research also considered the barriers to retirement for people working in Australian Disability Enterprises.

The report can be downloaded from the FAHCSIA website here.

Disability Solutions magazine - archives

Disability Solutions is a highly regarded magazine, focusing on issues of interest to people with Down syndrome and their families, and the professionals who might work to support them, published in seven volumes between 1996 and 2006. 

Joan Medlen was its respected editor and publisher. The magazine was published in print and online.  The quality of the articles is such that they are still relevant to and popular with families and professionals, and much sought after. 

Although Disbaility Solutions is no longer being published, the archives are still accessible for free download, and are now located under the unbrella of the Disability Compass organisation:

www.disabilitycompass.org/publications/back-issues-of-disability-solutions

Well worth a bookmark at all ages.

Free forum on mental health in children and adolescents with an intellectual disability

September 24th – Sutherland

The forum is:

• a joint initiative of Mental Health, School-Link, DAS, ADHC, UNSW and Education
• about mental health in children and adolescents with an intellectual disability
• designed for teachers, school counsellors, Mental Health Clinicians, ADHC clinicians and caseworkers 

and aims to provide practical information and to promote care-coordination.

For more details please contact tony.florio@sesiahs.health.nsw.gov.au  

Source:  NSW CID E- News September 2010

DownsEd web seminars and courses: timetable for September 2010 - June 2011

Down Syndrome Education International offers online information events in a number of formats, some free, some with a fee.

Free online advice sessions
A timetable for free online advice sessions taking place from to the end of the year is now available. Topics include reading, literacy, inclusion and the See and Learn programmes:


http://blogs.downsed.org/downsed/2010/09/free-online-advice.html?dm_i=9MS,8UO0,10ZI37,N47H,1

Web seminars and online courses
A timetable of events from now until June 2011 is now available:
www.downsed.org/en/gb/online/webinars/timetable.aspx

Times scheduled are generally during the day in the UK.  To convert times to Australian (or other international) time zones, visit: www.timeanddate.com or www.timezoneconverter.com/cgi-bin/tzc.tzc or Google 'international time zone converter' for a similar site.

Support worker position

Julie James, mother of 23 yr old Thomas, wants to employ a support worker to sleep over a few nights a week and to take Thomas out on social activities.

For further information about the position, you can contact Julie directly on 9894 9704 or  0417 247 395

Team Australia: 5th World Swimming Championships

Team Australia members were presented with their uniforms for the 5th Internaitonal Down Syndrome Swimming Championships at Noosa recently.  The meet will take place in Taiwan  1st - 8th October 2010.

Lucy is on the left, proudly carrying the flag with her teammate.

Sarah Harvey writes:
The Australian team comprises three swimmers from NSW: Lucy Dumitrescu, Daniel Rumsey and Brendon Foley. It is fantastic to see swimmers with Down syndrome swimming against other swimmers with Down Syndrome from all around the world - a completely level playing field.
The competition will be fierce with more countries competing each time, and world records will be broken. Please wish them luck.

For more information on the Down Syndrome Down Under Swimming Organisation, visit: www.dsduso.org
Video of the uniform presentation (by university student, Jessica Taylor, for Local 7): www.usctvnews.journalismaustralia.com

People with Down syndrome doing great things in the arts - Accessible Arts newsletter

The September 2010 issue of Accessible Arts Newsletter has lots of news about people with Down syndrome involved in all sorts of arts endeavours, all over NSW. You'll read about Digby Webster,  Daniel Harrowell, Tracie Sammut, and you'll see others in photos accompanying other stories.

Congratulations to Dean Watson on his recent artist-in-residence stint at Bundanon - Dean has worked extensively with people with Down syndrome, especially to teach Flamenco in some very fine venues.

Buddy Walk - Australia: Wollongong, Sunday 31st October

The date for Wollongong's Buddy Walk-Australia 2010 event has been set for Sunday 31st October, in beautiful Stuart Park ... come and join us for a stroll along the Harbour foreshore to the lighthouse, and back for picnic beneath the trees, and games, and goof fun on the grass. You never know who you'll catch up with!

Online registration and fundraising hero pages will be available shortly.  Contact Priscilla at Down Syndrome NSW, on 9841 4404, or priscilla@dsansw.org.au

Letter to the editor: We're failing the human rights test

Published in the Sydney Morning Herald (16/9/2010) in response to the report of unreliable nuchal translucency testing as a prenatal indicator of Down syndrome:

The most distressing aspect of the study of Down syndrome tests is that the researchers appear heartlessly unconcerned that more than 90 per cent of children who test positively are aborted (''Down syndrome tests performed inaccurately by 45% of operators", September 15). Children at risk of abortion because of Down syndrome have human rights. Each child at risk of abortion because of a disability is entitled to rights protection ''before as well as after birth'', as recognised by the Universal Declaration of Human Rights.

Under the UN Convention on the Rights of Persons with Disabilities, Australia agreed to protect children at risk of arbitrary deprivation of life because of their disabilities; to provide them with prenatal as well as post-natal care; to institute education programs that foster respect for them as part of human diversity and humanity; and to combat stereotypes, prejudices and harmful practices perpetrated against them.

It would be hard to find a more harmful practice than the promotion of Down syndrome testing.

Rita Joseph Hackett (ACT)

And this response to Rita Joseph was published by the Sydney Morning Herald today (17/9/2010):
A lifelong struggle is too much to bear

Rita Joseph (Letters, September 16) does not address the experience of raising children with a serious intellectual disability. It is often accurately described as ''rewarding'', but less publicised are the struggles of parents who are demoralised, exhausted, emotionally and financially overstretched, and who juggle the needs of a disabled child with those of their neurotypical offspring.

Some intellectually disabled children make extraordinary gains, which lead to fulfilling and even largely independent lives. But others require permanent care and assistance in such basic tasks as dressing, feeding and toileting. For many parents, the biggest worry is who will take care of their children as they age.

Especially while government assistance for disabled people and their carers remains in such a parlous state, it is hard to blame parents for deciding to terminate a Down syndrome pregnancy, sparing themselves decades of heartache and uncertainty. Those who have not made such a decision are in no position to judge.

Thea Gumbert Alexandria

Library Thursdays: Out in the web

Paediatrician and father, Len Lenshin's website, http://www.ds-health.com/ is a great source of information on health topics related to Down syndrome. He has also compiled a list of over 200 sites on the Internet dealing with Down syndrome. There are often little gems hidden in these websites. Here's a couple of Down syndrome association websites that have some useful information.



The Down Syndrome Association of Greater Cincinnati has a few very good things on their website:

• A general newsletter plus newsletters for educators as well as healthcare professionals



• Friendship network - a social networking website for adults with Down syndrome



• Siblings booklet (Down Syndrome Association of Greater Cincinnati)



• An extensive library

Down Syndrome Association of Central Texas have a nice manual for educators on inclusion, a booklet, All About Me, to help teachers get to know your child, their interests, strengths and skills and Inclusion Solutions newsletter for teachers with tips to promote inclusion.



Another couple things worth mentioning on the web are the recorded webcast of the Siblings talk done by Brian Skotko and Susan Levine (authors of Fasten Your Seatbelt: a crash course on Down syndrome for brothers and sisters--available from the library) as part of the Children's Hospital Boston Allen C. Crocker Lecture Series.


The next live talk webcast will be on Tuesday, 28th Sept. at 9:00 a.m - 10:30 a.m. Sydney time (27/9/10 7:30-9:00pm Boston time). It will be on Obstructive Sleep Apnea in children with Down syndrome by Dr. Dennis Rosen.

Skotko and Levine can also be seen in a Youtube clip discussing a sibling's question: Why do people stare at my brother or sister? It looks like they may be planning to do a series of these judging from Skotko's website's blurb about it.



Lastly, we are looking forward to receiving our copies of the new book by the authors of Mental Wellness, Brian Chicoine and Dennis McGuire: The guide to good health for teens and adults with Down syndrome. Woodbine House's website has a preview of the first chapter, Understanding Common Issues That Affect Health Care. Let us know if you'd like to reserve a copy when the book comes in or if you'd like to borrow anything else.

Prenatal Down syndrome test performed inaccurately by 45% of operators

An Australian audit of the accuracy of local operators offering  nuchal translucancy testing as a prenatal screen for Down syndrome is reported in the press today

Down syndrome test performed inaccurately by 45% of operators,  Amy Corderoy, Sydney Morning Herald,  September 15, 2010

Some pregnant women may be unaware their baby has Down syndrome because almost half the operators certified to carry out a common screening test are not performing it accurately …... read the full news report here 

The abstract of the research article, published  by the Australian and New Zealand Journal of Obstetrics and Gynaecology article free online, but if you want the full text, you have to purchase access.

Citation:
NISBET, D. L., ROBERTSON, A. C., SCHLUTER, P. J., MCLENNAN, A. C. and HYETT, J. A. , Auditing ultrasound assessment of fetal nuchal translucency thickness: A review of Australian national data 2002–2008. Australian and New Zealand Journal of Obstetrics and Gynaecology, no. doi: 10.1111/j.1479-828X.2010.01207.x

Professor Ron McCallum re-elected to prestigious United Nations position

Professor Ron McCallum, of Sydney, has been re-elected to the United Nations Convention on the Rights of Persons with Disabilities Committee.

Professor McCallum, a prominent labour law academic, was the first totally blind person to have been appointed to a full professorship in any field at any university in Australia or New Zealand.

The Minister for Disability Services, Peter Primrose, said that Professor McCallum was the only candidate elected on the first secret ballot, which indicated the high regard in which he is held by the international community.

“On behalf of the Government and the people of NSW I congratulate Professor McCallum on his latest achievement.”

Professor McCallum is the only Australian serving on a UN Treaty body.

He was elected to the Committee for a four year term and will continue to chair the Committee, a position to which he was unanimously elected a year ago, until the end of 2012.

Before becoming the foundation Blake Dawson Waldron Professor in Industrial Law in the Faculty of Law of the University of Sydney in 1993, Professor McCallum taught at York University in Ontario, at Duke University in North Carolina and at Monash University.

In July Professor McCallum was appointed interim Chair of the NSW Disability Council.

In 2006 he was made Officer in the Order of Australia for his services to tertiary education, for industrial relations advice to governments, for assistance to visually impaired persons and for social justice.

Media Release: 7 September 2010, ADHC

Physical and mental health promotion for people with an intellectual disability: a workshop

The Centre for Disability Studies is hosting a workshop for families, service Providers and other professionals, presented by Dr Seeta Durvasula and Ms Rachel Dickson.

This interactive workshop examines the ways that families, support workers and other professionals can promote physical and mental health in people with intellectual disability.

9.30 am - 4.00 pm

Monday 11th October 2010

Cost: $50 for family members

Charles Blunt Conference Room
Royal Rehabilitation Cnetre Sydney, 59 Charles St, Ryde

Phone 8878 0500 email mcarrick@med.usyd.edu.au  for further information, or to register.  Click here for a flyer and registration form to return by mail or fax.

In the papers ....

News that my baby had Down Syndrome was like a 'scary movie' but our little Mary is doing just fine, Evening Herald (Ireland), 13th September, 2010
Journalist and TV presenter Brendan O'Connor has spoken for the first time about the birth of his baby daughter, who was diagnosed with Down Syndrome.

The outspoken writer and his wife Sarah Caden welcomed a second baby girl, Mary, into their family just two weeks ago .... read the full story here, and a more expansive version here, in the Sunday Independent.

Gran hails "hero" grandson after dislocating false hip, Bucks Free Press (UK), 7th September 2010:
A boy with Down’s Syndrome rushed out of the house to get help for his grandmother who was paralysed with pain after dislocating her artificial hip.

Plucky young Lewis Taplin, 9, who lives near his grandmother in Downley dashed over the road to alert neighbours.
“He’s my hero,” said his relieved grandmother Carmelina Taplin, 67 .... read the full story here

Online registration and sponsorship for Buddy Walk - Australia 2010

Check in here for links to online registration and sponsorship for NSW Buddy Walk - Australia 2010 events in October.

A note on self-esteem ....

 .... from the Adult and Teen Down Syndrome Clinic in Illinois, brought to you by the authors of Mental Wellness in Adults with Down  Syndrome, and the soon-to-be-released The Guide to Good Health for Teens and Adults with Down Syndrome.

There's lots of good information linked to the Clinic's Facebook page

$8.5 US million to study aging and dementia in adults with Down syndrome

A large grant to the highly regarded and experienced Kennedy Kreiger Institute in Baltimore will add to knowledge about dementia in older people with Down syndrome, by supporting a further five years of work on research that has been ongoing since 1987.  Read the Kennedy Kreiger news release here.

This work is in addition to a five year project on dementia and Down syndrome recently announced by the University of Kentucky.

For Australian guidelines on Alzheimer's disease and Down syndrome, click here.

Library Thursdays: Managing my money

Everyone needs to know how to manage their money and people with Down syndrome are no exception. Most find this very challenging. Woodbine House has recently published a book, Managing my money: Banking and budgeting basics by Natalie Hale, to make learning these skills easier.


The book is designed to be used by a teacher or parent together with a student. The teacher notes are at the start of each chapter and the student pages follow in a larger type. Much thought has been put into making the book simple and as visually and conceptually conducive to learning as possible. There are many colourful illustrations to break up the text. The spiral binding makes it easy turn the page back to focus only on the concept on one page. The tasks have broken down into small components. The ledgers have used colour-coding with a standard, although enlarged, format that is used throughout.

A CD is included which allows printing of these visually understandable forms.

The first part teaches about keeping records. Envelopes are used for incoming money (plus) and receipts of expenditures (minus) and then these are recorded on the ledger sheets.

The second part looks at budgeting and understanding needs, wants and savings.

The third part discusses how to keep a cheque account. This is probably the least useful section for Australians. It is possibly not necessary for people with Down syndrome to learn how to use a cheque account. These days most bills can be paid online, purchases are made with cash from an ATM or with a debit card. There is a short lesson on debit cards, but more of this would have been better.

At first glance, the book looks a little overwhelming. But the author gives plenty of instructions for using it and advice for how to expand each section to provide plenty of practice and repetition to understand each concept before moving on. The only other problem for Australians is that the dates are taught in month/day format, so that would have to be changed before using it so that it wouldn't be confusing. Despite these quibbles, I think the book is a great resource which has addressed the learning needs of people with Down syndrome. Money management skills are extremely useful in increasing one's independence, so this is a great help towards attaining those skills.


Contents, excerpts and other information at Woodbine House website.


If you'd like to borrow this book or anything else, please call us or email.

What makes me: Australia Council for the Arts invites participation

What makes me is a project developed by the Australia Council for the Arts and invites us all to think about what art adds to your lives. 12 Australians have participated in producing personal "art cubes" demonstrating the scope of the project on its website.  Amongst them is Digby Webster, a young man with Down syndrome who is involved with several projects through Accessible Arts.  Digby's art cube is here.  Digby's cube includes photos, graphics and a short video of him a work, and performing with hip hop dancers, First Flight Crew.

All Australians can participate - instructions are on the project's website, that allow you to construct your own art cube, to post to your website. "As everyone's cubes are combined, we will gradually be building Australia's largest collaborative digital story."

If you decide to make an art cube with or about someone with Down syndrome, please let us know so that we can post a link .... and we'll have a go at making our own.

EXHIBITION APPLICATIONS INVITED: AART.BOXX 2011

Accessible Arts and Sydney College of the Arts will present a national exhibition of recent works by contemporary visual artists with disability. The exhibition will build on the success of the Accessible Arts led initiative and exhibition program, titled AART.BOXX.The exhibition will be held at SCA Gallery in October 2011.

The selected works for this exhibition will aim to challenge the current discourses within contemporary art by highlighting art practices that are informed by cultures of disability.

Applications are open to Australian artists with disability. Applications for pre-selection close Friday 8 October, 2010. Download application here

For further information contact Josie Cavallaro, Arts Development, on 02 9251 6499 (ext 5) or email jcavallaro@aarts.net.au

CP blogs are back

CP Blogs, a suite of blogs maintained by the Spastic Centre of NSW has returned.  They are not exclusively related to matters relevant only to those with Cerebral Palsy (CP) - you will find some very worthwhile posts here:

The Scene - posts focus on news, events, activities

Hey Dad -  Rodney Clarke posts about his expereinces as Dad to a son with CP.  There is much for other fathers to appreciate too.

Fathers Day 2010

Families

 

UK researchers uncover secret of pregnancy problems in older women

News release from the Life Science Centre, Newcastle University (UK):

Scientists are a step closer to understanding why older women are more likely to produce abnormal eggs, increasing the risk of infertility, miscarriage and birth defects, such as Down’s Syndrome.

The research has been carried out against the backdrop of dramatically increased cases of Down’s Syndrome pregnancy caused by the growing trend for women to postpone having babies until their late thirties and early forties.
While it has long been known that the increased risk of abnormalities in older women is due to eggs containing wrong number of chromosomes, the underlying causes have remained a mystery. Research published today in the journal Current Biology, sheds new light on why this happens.

The key is declining levels of proteins called Cohesins, which hold chromosomes together by entrapping them in a ring. This is essential for chromosomes to split evenly when cells divide.

Read on here for the full news report.


Citation (in Press)
Lisa Martine Lister, Anna Kouznetsova, Louise Ann Hyslop, Dimitrios Kalleas, Sarah Louise Pace, Jaclyn Catharina Barel, Abinaya Nathan, Vasileios Floros, Caroline Adelfalk, Yoshinori Watanabe, Rolf Jessberger, Thomas B. Kirkwood, Christer Höög, and Mary Herbert (2010) Age-Related Meiotic Segregation Errors in Mammalian Oocytes Are Preceded by Depletion of Cohesin and Sgo2, Current Biology, doi:10.1016/j.cub.2010.08.023  
Published online  2 September 2010 - abstract is freely available, full text requires purchase.

ANITA – a ground-breaking film about disability: Sydney Latin American Film Festival

This year the Sydney Latin American Film Festival is proud to present a ground-breaking Argentine film featuring a magnificent lead performance by Alejandra Manzo an actress with Down syndrome.

ANITA- a young girl’s odyssey into the heart of Buenos Aires
Marcos Carnevale, 2009, Argentina, 106min, Spanish with English subtitles

Date: Sunday 5th September
Time: 5:45 for a 6pm start

Where: Dendy Opera Quays (with a second screening at Casula Powerhouse on September 19 at 2pm)

Tickets: Available at moshtix: http://www.moshtix.com.au/event.aspx?id=39093

Part of the proceeds of the Sydney screenings of Anita will be generously donated to Down Syndrome NSW.

While intellectual disability has been a theme in many well-loved films – and has garnered Oscars for actors like Geoffrey Rush (as David Helfgott in Shine), Tom Hanks (for his role in Forrest Gump) and Dustin Hoffman (in Rain Man) - rarely do we actually see actors with an intellectual disability on film.


“It is inspiring to see such a powerful performance from a young person with Down syndrome in a full length feature film. Following our own home grown star, Gerard O’Dwyer winning ‘best actor’ at Tropfest last year, this is confirmation that actors with disabilities can do so much more than simply playing the ‘token’ roles we have seen so often in the past” Steve Clarke, CEO of Down Syndrome NSW commented.

In Anita, Alejandra Manzo gives a moving performance of extraordinary emotional insight as a young woman who is lost and friendless in her city after a terrorist attack tears her neighbourhood apart. The story is based on the real life terrorist attack that targeted Buenos Aires’ Jewish community in 1994.

As many local Latin film fans would know, the Festival donates profits to selected community organizations in Latin America and Australia. With this particular screening, we’re pledging half the profits to our usual community support program with additional support shared between the Down Syndrome Association of Argentina and Down Syndrome New South Wales.

“Our commitment is to raise community awareness together with providing a fund raising opportunity for these two incredible non-government organizations,” said Jacqueline Andres, Western Sydney Festival Organiser. “Supporters will have the opportunity of enjoying this movie at two different venues, with screenings being held at both the Dendy Opera Quays and Casula Powerhouse.”

“I want to thank the Sydney Latin American Film Festival for making this film so accessible to a wide audience, raising the profile of people with disabilities in such an interesting way, and raising much needed funds to support families of people with Down syndrome” Steve Clarke said

The Sydney Latin American Film Festival is delighted to be able to present a film that highlights the experience of disability and that breaks new ground in creating a starring role for a young Down syndrome actress.

“We were so excited when we received this submission,” said Sarah Gilbert, member of the festival team and curator for the Argentine film submissions. “It really fits in with who we are as a festival and what we want to achieve in terms of making a difference – not only to the worthwhile organizations we are able to support, but with the kinds of stories we can bring to audiences here in Sydney.”

For further comment or information, please contact Sarah Gilbert on 0424 312 293, or Steve Clarke (Down Syndrome NSW) on 042 4044 930.

Read more about Anita and the Sydney Latin American Film Festival 2010 here.

DS NSW publications: Spring NSW

Down Syndrome NSW  publishes a number of regular publications, monthly and quarterly. The most recent print collection was mailed to members this week. Some are now available online too.

Voice, September 2010 - quarterly journal published in collaboration
with Down Syndrome Victoria
The theme for this issue is 'Looking ot the future'

Voice is available by subscription as a print publication.
The feature articles from each issue are posted online here
Active links to online resources referred to  are provided for readers' convenience:
Links to online resources in Voice, September 2010
Guidelines for contributors to Voice
Contact Down Syndrome NSW on 9841 4409 or admin@dsansw.org.au  to subscribe to Voice.

Down Syndrome NSW News, Spring 2010 - a NSW nesw supplement to Voice

available online here

Down Syndrome NSW e-Update, September 2010 - a monthly information bulletin and listing of events

available online here

Speak UP! issue 38, Spring 2010 - a newsletter for and by people with Down syndrome

available online here

Dave Hingsburger on FoxNews.com

Dave Hingsburger's recent  blog post on the use of the word "retard" as an insult has been posted on FoxNews.com, where is will reach a wider audience.

Library Thursdays: National Literacy and Numeracy Week

Although we've blogged on literacy resources previously, there are a few more things to highlight this National Literacy and Numeracy Week.

• There are many useful links on the NL&N Week website for kids here and others here and many more.
• DownsEd has just released the next step in the See and Learn program--First Sentences.
• A good site for online literacy material for older beginning readers is Tar Heel Reader.
• NSW's Department of Education's Count Me in Too website has many good online games on basic maths concepts that would suit students with Down syndrome.
• In our library, we have Teaching Maths to People with Down syndrome and other hands on learners by Deanna Horstmeier (Books 1 & 2) which have many practical suggestions for numeracy. Also Practical Teaching strategies in numeracy for children with learning difficulties by John Munro.(Set of 5 guides from Prenumber to Numbers to One Hundred)
• Other library numeracy resources can be found in the library listings.
• To help with Money Management, is a new book from Woodbine House, Managing my money: Banking and budgeting basics by Natalie Hale which will be reviewed next week.

Many more general resources to help with literacy and numeracy can be found at the Jill Sherlock Memorial Library.

If you'd like to borrow any literacy or numeracy resources from our library or anything else, just call or email.

Key Sign for Babies and Toddlers: Down Syndrome NSW workshop

A workshop for parents of children 0 – 4 yrs, designed to assist day to day communication. Key signing is used with speech.

Presented by
Aileen Ryan, Hands Can Talk

10.00am -1.30pm, Friday 29th October, 2010

at Northcott Function Centre
1 Fennel Street, North Parramatta
(Parking is available at the Parramatta Leagues Club on 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.

Booking is essential

Please call Lynn or Judy on 9841 4401, or email support@dsansw.org.au

Click here to download a flyer