Sydney Film Festival: Me Too

An award winning Spanish film about a unusual man with Down syndrome (played by Pablo Pineda), Me, Too is scheduled for screening at the Sydney Film Festival on two dates in June (Sat 12th and Mon 14th).  From the Festival's website:


Me Too, Álvaro Pastor, Antonio Naharro, Spain, 103 mins

One of the most charming romances to hit the screen this festival also confronts preconceptions about the intellectual and sexual lives of people with disabilities. After graduating, 34-year-old Daniel (played by Pablo Pineda, renowned for being the first European with Down’s Syndrome to receive a university degree) takes a job at a social services office in Seville where he falls for Nuria (Lola Dueñas), a shambolic colleague who is looking for love in all the wrong places.

Beset with challenges from the start – sniggering co-workers, academic family who’ve encouraged his ambitions but failed to educate him in matters of attraction – Daniel sets out to win Nuria who is clearly unsettled by his desire for her. Pineda and Dueñas received Best Actor and Actress awards at San Sebastien Film Festival for their wholly realised performances in this endearing debut feature.

Booking options and details are available from the SFF website: http://sff.org.au Search for the film by name under Films and Events for dates, times and venues, links to bookings.

It Takes A Village To Help A Sister: Rachel Simon

Rachel Simon is well known for her book, Riding the Bus With My Sister, and as a contributor to Thicker Than Water. She now maintains a blog, where she recently wrote about an episode in which Beth needed some fairly urgent support with a health problem, and what she, Rachel, learned about he importance of community from it.  Read the post here.

You'll see from her blog that she has another book out, too The House on Teacher's Lane.

Disabled children face years in crisis care

The dire circumstances for some people with disabilities and their families who are in critical need, and seeking out of home care was highlighted again on the front page of this morning's Sydney Morning Herald:

Children and teenagers with disabilities have been stuck in crisis accommodation, some for more than eight years - at a cost of up to $1.5 million - because the state government has been unable to find them homes.    Read Louise Hall's report here

Healthy Adulthood: Kiama, 25th June

Healthy Adulthood

An informal dinner and discussion for parents and family carers of adolescents and adults with Down syndrome

6:30pm - 9:30pm, Friday 25th June 2010

Kiama Leagues Club
Click here for a Healthy Adulthood, Kiama, flyer

Seminar for teachers: Newcastle, 25th June

Playing to Their Strengths

- a workshop for teachers

9:30am - 3:00pm

Friday 25th June 2010

Quality Hotel Apollo International
290 Pacific highway, Charlestown

$99 per person (DS NSW members)
$132 per person(Non members)
Includes GST, morning tea, light lunch

• Click here for a Playing to Their Strengths, Newcastle, flyer and registration form

Library Thursdays: Down Syndrome Transition Handbook

Woodbine House has published another book in their Topics in Down Syndrome series, The Down Syndrome Transition Handbook: Charting your child's course to adulthood by Jo Ann Simons, (2010). Although it is definitely geared to the American experience, it has much to offer any family of an adolescent with Down syndrome.

The author uses her experience as a mother of a young man with Down syndrome to help others as their child moves from school to adult life. The book is detailed about things to think about and plan for throughout the transition period. It discusses using high school to start to prepare, post-secondary options, employment, housing, family and other support networks, health and emotional well-being, funding, transport, and more. Included within each chapter are stories from many parents about their experiences.

I thought it was a valuable book not only for the information but also to help families explore their feelings about the process they are all going to go through as their child becomes an adult. I especially enjoyed Simon's son's thoughts on his mother learning to let go.

There are other good books on planning for adult life, but I found this one a worthy addition to those because of its personal touches (among them is the unmailed response to a department's request for yet another assessment). Unless you find it annoying to have to skim through the bits on American requirements and systems, I would highly recommend this book for all parents of teenagers.

Other books on planning for adult life:

• Safe and secure, Al Etmanski, PLAN, 2008.
• Transition to Employment for Adults with Down Syndrome, Down Syndrome Issues and Information, Down Syndrome Education International, 2006.
• What kind of a future?: Supporting young people with Down’s syndrome to lead full lives after they leave school, Foundation for People with Learning Disabilities,UK, 2007.

If you'd like to borrow any of these resources or any other in the library, just call or email us.

Supporting grandparents: Sunday 6th June

Informal meeting for grandparents of children with Down syndrome 0 - 6 yrs old.

• An opportunity to get some information about Down syndrome
• An opportunity to meet other grandparents
• An opportunity to ask questions

Sunday 6th June 2010 
1:30pm -3:30pm
Includes afternoon tea

Down Syndrome NSW

Seminar room
80 Weston Street, Harris Park

Free

RSVP to Judy or Lynn: 

Phone: 9841 4401
Email: support@dsansw.org.au 

This workshop will be cancelled in the event that minimum numbers are not met

Click here for a flyer

New Minister for Ageing, Disability and Home Care

Last week's NSW Cabinet reshuffle saw a change of Ministers for Ageing, Disability and Home Care, as Paul Lynch took on new portfolios and Peter Primrose, MLC moved into the ADHC role:

• ADHC press release
• Contact details for the new Minister for Ageing, Disability and Home Care
• Full list of NSW Cabinet positions

Research: new studies on Alzheimer's disease and Down syndrome

Longitudinal study of ageing and Alzheimer's disease
Researchers at the University of Kentucky have been awarded a $US2.4 million grant to study ageing and Alzheimer's disease in people with Down syndrome over a five year period.  Deatials are available here.

Links between Alzheimer's disease, cataracts and Down syndrome
A team of researchers at the Boston University Medical Centre has discovered that the protein that forms plaques in the brain in Alzheimer's disease also accumulates in the eyes of people with Down syndrome. The new findings in Down syndrome show that the toxic protein, known as amyloid-β, that causes Alzheimer's pathology in the brain also leads to distinctive cataracts in the eyes. The discovery is leading the researchers to develop an innovative eye test for early detection of Alzheimer's pathology in both disorders.  
Read more here.   (Note: the comment, attributed to the corresponding author of the study, Assoc Prof. Lee Goldstein, that "People with Down syndrome develop symptoms of Alzheimer's-type dementia often by the age of 30" refers to changes in the brains of people with Down syndrome, not to the clinical appearance of Alzheimer's disease, which is not known to occur in people with Down syndrome before the age of 30.)

My Perspective Photographic Award

The UK Down's Syndrome Association, based in London, has announced the 25 finalists in its My Perspectives  competition,  for photographs taken by people with Down syndrome, saying:

The first ever My Perspective Photographic Award has been a fantastic success with over 300 images submitted. It's been pretty tough trying to whittle the images down to our top 20, so we've picked our top 25 instead ...

The finalists' photographs can be viewed online here. 

FOOTBALL4ALL GALA DAY 2010

What's it all about?
Football NSW hosts an annual Football4all gala day for children and young people with special needs. The day is open to anyone involved one our special needs football programs or who are invited to attend and provides players with an opportunity to enjoy a an exciting day of football with family and friends.
With a carnival like atmosphere and at no expense to participants, players enjoy the thrill of playing small sided games against other teams as well as experiencing other activities including jumping castles, face painting, balloons, special guests and a free BBQ lunch for all participants.

The Football4all Gala Day will be held on Sunday 20 June 2010 at Glenwood. Information and entry forms are now available.

For more information contact:

Event Enquiries: Samantha on 02 8814 4456 or email samantha@footballnsw.com.au

Gala Day Entries: Kim on 02 8814 4444 or email kim@footballnsw.com.au

• Further information on Football4all programs

Stanhope Cup - Softball for All

Come and try registration day

Sunday 27th June

NSW Softball Centre

Blacktown Olympic Park, Rooty Hill

Competition starts Sunday 11th July

and continues on Sundays until 26th September

Cost $70 per person (includes Shirt and cap)

All equipment provided

For further information, visit www.softball.net.au or phone 9677 4006

Option to get Centrelink benefits weekly

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

For more information contact Centrelink:

www.centrelink.gov.au/internet/internet.nsf/contact_us/index.htm

Source: Work 'n' Care April 2010

Library Thursdays: No more meltdowns

No more meltdowns: Positive strategies for managing and preventing out-of-control behaviour by Jed Baker (Future Horizons, 2008) is a book to help deal with behaviour problems that don't seem to respond to the usual techniques. Baker, author of the popular Social Skills Picture Books, uses a positive approach to creating plans to prevent negative behaviour. Baker has experience working with people on the autistic spectrum and although this book is not specifically for people with Down syndrome or autism, the visual learner is well suited to the approach he takes.

The strategies include accepting and appreciating your child, lowering your expectations, and distracting to reduce the behaviour when it happens. To limit the behaviours in the future the cause must be determined and Functional Behavioural Assessment (Antecedent, Behaviour, Consequence (ABC)) is used. Baker provide 15 plans of common concerns such as: refusal to eat healthy foods, doing schoolwork, cleaning up, waiting, stopping a fun activity, bullying, and going to bed. Baker provides a scaffold to create your own plan.

This book would be useful to families and teachers who struggle to figure out how to address behaviour issues. These techniques will work well with people with Down syndrome because they encourage determining the reason for the behaviour, accepting the child's limitations, teaching skills required to be successful in alternative behaviour and using visuals or whatever other supports the child needs.

Other behaviour resources:

Kathleen Feeley & Emily Jones, Strategies to address challenging behaviour in children with Down syndrome, Down Syndrome Research and Practice 2008, 12:(2) 153-163.

Stepping stones Triple P workbook and DVD

If you'd like to borrow No more meltdowns or any other resource from the library, just call or email us.

Child actor with Down syndrome - call out

A film producer working on a commission for Relationship Australia in partnership with the Federal Attorney General's department to produce training DVDs, has asked for our assistance in finding a young girl, 10 - 11 yrs old who has Down syndrome, for a role in one of the training films.  It is about family violence (not directed towards to the child), and will not be on general public release.  The child having a disability is an integral aspect of the scenario.  The scenes will be filmed on one day between 8th - 11th June.

If you would be interested in following up further detail on this opportunity for a acting role, please contact Priscilla at DS NSW on 9841 4402 or priscilla@dsansw.org.au, or the director, Alissar Gazal at Pomegranite Productions, on 0414 248 857

From NDIS, on the Productivity Commission's discussion paper

The Productivity Commission released their discussion paper yesterday. The paper summarises what the Commission sees as the important issues, and contains a series of questions to prompt discussion. People may choose to answer these questions in their written submissions and during public hearings.

There are a number of ways you can participate in the inquiry. You can make a formal submission or a presentation to the Commission at one of the public hearings. The guidelines for making a formal submission are available on the website below.

You can also make what is called a personal response – which is different to a formal submission. In a personal response you can choose to answer any or all of the questions in the paper based on your personal experience. The Commission will then compile all these responses into a single document. This is a shorter, more informal way to participate in the inquiry.

The issues paper contains a number of questions about a wide range of issues. It is important to remember that you do not have to answer all of the questions – just those which matter most to you. It is also important to remember that the Commission is most interested in what you would like to see in the future, rather than detailing all the ways the current system is failing. This inquiry is about a developing a blueprint for the future.

In addition to the issues paper, the Commission has produced an easy English version and a short summary document which covers the key questions. You can download all of these documents at: http://www.pc.gov.au/projects/inquiry/disability-support

We suggest that you start with the short summary document, before you look at the main issues paper, which is long and complex, and then focus on the questions that are most relevant to you.

Submissions are due at the end of June.

The dates of the initial round of public hearings have also been set. Check out the link above and find out when the inquiry hits your hometown.

Remember this is your chance to change the future of people with a disability and their families in this country. Don’t miss this important opportunity to advocate for the kinds of reforms you would like to see.

And stay tuned for more information about the growing campaign for a National Disability Insurance Scheme and how you can become more involved.

Thanks again for all your support.

The NDIS Team
(received 18/5/2010)

The Productivity Commission Public Inquiry into Disability Care and Support - link to terms of reference, discussion paper

Buddy Walk Australia 2010

Adelaide 

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

Melbourne 

Sunday 10/10/10

Canberra

Saturday 16/10/10

Brisbane

Sunday 17/10/10

Perth 

Sunday 17/10/10

Sydney

Sunday 24/10/10

Newcastle, Wollongong, Wagga Wagga dates to be confirmed.

This year, plans are a foot for a number of new Buddy Walks

 ..… Tasmania, Northern Territory, Bendigo and other locations are all planning their first Buddy Walks

..… stay tuned!

Proloquo2go workshop: fully booked

Our 5th June parent forum on how Proloquo2go can be used to assist people with Down syndrome to communicate is fully booked.

You can register your interest in taking up a cancellation should any arise, or for a repeat event,  with Siena, on 9841 4411, or workshops@dsansw.org.au

Details are available here.

Thank you to those who have booked a place - we look forward to seeing you.

Coffee morning dates - Newcastle

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

Image: dreamstime.com

When and Where?

From 10am

Tuesday, 25 May – Diggers @ Wallsend
Friday, 16 July – Jewells Tavern

Tuesday, 24 August – Warners at the Bay
Friday, 8 October – Jewells Tavern

Tuesday, 16 November – Diggers @ Wallsend

Everyone is very welcome!

If you are keen for quarterly evening meetings with a speaker let Anna know, and of course any interest in managing this aspect is welcome.

Contact: Anna Brown 0414 90 90 40

"From Institutions to Community Living" Forum

The NSW Ombudsman and Disability Council NSW present ‘From Institutions to Community Living’, a free forum that will examine the plans for working with people with disabilities and their families to move from large residential centres to community based accommodation.

At the forum we will hear from individuals with first hand experience in making this move, and explore the challenges and opportunities ahead.

Date: Monday 21 June 2010

Time: 9:30am – 4:15pm

Venue: The Banquet Hall, Sydney Masonic Centre, 66 Goulburn St, Sydney.
The Sydney Masonic Centre is an accessible venue.

Cost: Free

RSVP: Places are limited so please respond by Friday 4 June to: forums@ombo.nsw.gov.au  or Ph: (02) 9286 0900 or 1800 451 542. To RSVP, please provide your name, address, contact details (an email or postal address). Please specify your dietary requirements.

For further info: email: forums@ombo.nsw.gov.au  or contact Eva Ph: (02) 9286 0900 or 1800 451 542.