City-to-Surf participants supporting Down Syndrome NSW

Runners (and walkers) are starting to think seriously about the 2009 City-to-Surf event to be held in August, and we have some supporters already. You can click on their Everyday Hero Pages to see why they are running, and to pledge your sponsorship. Or maybe you'd like to run yourself .....

• Joe Hedger
• Tamzyn Bielecka
• Brad Dewhurst

Thanks guys! Let us know if you decide to sign up too.

Library Thursdays: Boundless

We've had a few short films come into the library the last month or so. The latest is Boundless (Written and directed by Steven Kanaris and Produced by Lisa Shaunessy), a short film showing at the Dungog Film Festival and St. Kilda Festival this weekend. The film was shown in April at the Accessible Arts screening at the Dendy Quay Cinema. The film stars two members of DS NSW-- Saxon Graham and Emma Brodie. Saxon plays Craig, a man with Down syndrome who lives with his parents and sets out to get a job in the city. It is beautifully filmed in Sydney and the actors are fantastic. The film was developed through workshops done with actors Barry Brodie, Emma Brodie, Tracey Sammut, Joanna Rix, Ruth Cromer and Nick Hogan. The insight into work opportunities for adults with Down syndrome may be a little too bleak for some people. But it is a well made film that could generate some discussion. Photos from the shoot are available at the Boundless Facebook log.

 

Other films recently added to the library:

Yolk [Directed by Stephen Lance, Starring Audrey O'Connor]

Tropfest DVD [Includes Be My Brother Starring Gerard O'Dwyer]

Mr. Blue Sky 

If you'd like to borrow Boundless or any other DVD, just ask.

Accessible Cinema at the Sydney Film Festival

Professor Ron McCallum AO, United Nations Special Rapporteur for Disability will launch the Sydney Film Festival's Accessible Cinema stream on Saturday 6 June. The Accessible Cinema stream, a project of the Sydney Film Festival in partnership with Accessible Arts, features a range of movies exploring disability and access issues.

For details of the Accessible Cinema program and the launch event, visit the Accessible Arts website.

Dept Ed and Training website - new pages and links increase access to information

The NSW Department of Education and Training's website is continuing to be revised , and information relevant top the education of students with disabilities is now easier to find than ever before. A link directly from the home page goes to an introductory page linked to a wide range of resources and documents.

For the first time, this page, headed Disability Programs links to lists of all public schools with support classes as part of their programs, and to special schools. The type of disability catered for by each school is clearly identified.

Other linked pages and documents relate to funding, procedures and specialist services, including transport.

All well worth book marking for any family with a child with a disability who attends or might attend a public school in NSW.

Government response to inquiry into Special Disability Trusts

The Australian Government's response to the recommendations of the Senate Standing Committee on Community Affairs on Special Disability Trusts, published on 12th May 2009, is summarised here. The full selection of the Committee's papers, including the terms of reference, submissions, the report and the full test of the Government's response are available under this link:

• Building trust: Supporting families through Disability Trusts

Name change

Chewing the Fat is one of our favourite blogs. One we might not read every day but we do read every post. Always something to make you think, often something to make you laugh, sometimes something to stir you up.

Dave Hingsburger has opted for a change - his blog is now called "Rolling Around in My Head". But it's still Dave Hingsburger through and through. The address is the same, and the link is still at the top of our Blogroll (see right).

Workshop for teachers in special education

"Students with Down syndrome: maximising opportunities in 2009"

A workshop for teachers of students with Down syndrome enrolled in support classes and special schools.

10.00 am - 2.30 pm
Wednesday 1st July 2009

Social Enterprise Centre
Auburn

Cost per person: $44
(includes morning tea and a light lunch)

Click here to download flier and registration form

Enquiries to Siena O’Brien at carereducation@dsansw.org.au or phone 9683 4333

Another UK online photographic exhibition, some new blogs

UK organisation MENCAP holds a photographic competition and exhibition each year. The online exhibition of winners includes photographs of, and taken by people with disabilities, including a good proportion of people with Down syndrome.

There are nearly 80 photographs, so get a coffee and have a good browse. hard to pick a favourite!

While you are on the Mencap site, you might like to check out two more of their Family Blogs, each written by teenage girls, Heidi and Emma, both of whom have Down syndrome.

New study of how Down syndrome protects from some tumours

Lots of science and health media has picked up a report about a new study this week, in which the factors associated with Trisomy 21 that appear to protect people with Down syndrome against "solid", or "soft tissue" tumours are further explained. Researchers are already looking at how the new information might be of use clinically,

The study has been reported in the online edition of the journal Nature, and by several new sources, such as Eureka.

Dance Like Nobody's Watching - a new film

A new film from G.A.P. Media, written and directed by Elizabeth Collins

“Love like you’ve never been hurt,
Work like you don’t need the money,
And dance like nobody’s watching.

Dance Like Nobody's Watching will have its first public screening at:

Dungog (NSW) Film Festival 2009

12:30pm, Sunday 31st May



We haven't seen the film, but it does sound interesting. From the director's notes, this is a film about living with Down syndrome .....



".....told through the eyes of a young man who has Down syndrome. Paul Matley is a remarkable, charismatic and inspiring young man. We embark with him on a journey to bring awareness to society about those who have Down syndrome and their families. From birth and childhood, through to education, adulthood, employment, and old age, Paul’s journey of discovery opens our eyes to people who are not disabled, just differently-able."

• www.dungogfilmfestival.org

Library Thursdays: Nina Rose and her Dancing Prince

We're always looking for children's books that engender acceptance of people with Down syndrome by showing them participating in the community with everyone else. New to our library is one such book. Nina Rose and her Dancing Prince by Sandra Wise, illustrated by Julie Parsons (Sassey, 2008) is a lovely book about young dancers, one of whom has Down syndrome. Characters from Wise's earlier book, Nina Rose's Toes (on the K,1,2, NSW Premier's Reading Challenge list), encourage Hugh, a boy who loves dancing to go into the school dance competition. The book is endorsed by the DADAA (Disability in the Arts Disadvantaged in the Arts, Australia) of Western Australia who strive to relate the important role that the Arts play in "achieving social change for communities and individuals like Hugh".

The creators of this book have made it available to Down Syndrome NSW to use as a fundraiser. If anyone is interested in buying any copies, they will be available from our office for $19.95 (add $5.05 if you want it posted) with Down Syndrome NSW with 50% going to DSNSW. They'd make great end of year presents for teachers or therapists. You could also donate one to your school library.

The Nina Rose website has pages available for preview. You can also borrow both Nina Rose books from our library. Just ask.

This weekend RUGBY LEAGUE REFEREES donate $10 000 in match fees to DOWN SYNDROME NSW

This weekend all referees and sideline officials that officiate in the NRL Toyota Cup, NSW VB Cup and Bundaberg Red Cup will be donating their match fees to Down Syndrome NSW!

ANZ Stadium have also joined the NSW Rugby League Referees to support Down Syndrome NSW by donating 250 tickets to Friday night's Eels v Rabbitohs NRL game. An additional $3000 is expected to be raised from the sale of tickets to the NRL game.

100% of the money raised from the sale of the tickets to Friday night's game at ANZ Stadium will be given to Down Syndrome NSW. To buy tickets visit the Down Syndrome NSW website, here.

MEDIA QUERIES: Brenden Wood - 0417 407 851

Funds for innovative new disability housing in Goulburn

Media Release Date: 14 May 2009

A new type of supported housing for people with a mild intellectual disability is to be built in Goulburn by The Abbeyfield Society with support from the NSW Government.

Minister for Disability Services Paul Lynch said the NSW Government would provide $500,000 to the Goulburn branch of The Abbeyfield Society to buy the property where the new house will be built.

The patron of the Abbeyfield Goulburn group, Parliamentary Secretary for Social Inclusion, Senator Ursula Stephens, welcomed the announcement as a great initiative and investment in the Goulburn community.

“The Abbeyfield house in Goulburn will provide the right mix of independence and a supportive environment for individuals with mild disability. This type of accommodation empowers individuals to live full lives within the community,” Dr Stephens said.

The Abbeyfield model, which was pioneered in England in the 1950s, provides accommodation support for older people with limited income and few assets who want to retain their independence but who enjoy the company and security of others.

This model has been expanded in recent years to meet the needs of people with a disability.

Mr Lynch said the people who would live in the Goulburn house would have low to moderate support needs.

“The Abbeyfield model does not replicate any accommodation types currently provided for people with a disability in New South Wales,” he said.

He said the model was in line with the policy of the Department of Ageing, Disability and Home Care (DADHC) to increase the range and type of services available and to promote opportunities for people to integrate into the community.

“Under the Abbeyfield model, group accommodation is provided for up to 10 people,” Mr Lynch said.

Country Labor MLC for Goulburn Mick Veitch said the Abbeyfield model allowed each person to have a private bed-sitting room with an en-suite which they furnish themselves.

“Residents prepare their own breakfast and a housekeeper prepares the two main meals of the day, a service paid for by weekly contributions from the residents,” Mr Veitch said.

Mr Lynch said the success of the service was reliant on informal supports provided by family and community members.

“Abbeyfield has established a strong reputation around the world. It has more than 1000 houses in the United Kingdom and houses in 18 countries, including Australia,” Mr Lynch said.

“The Government is keen to support this project because it sees the introduction of this form of housing as being a real benefit for the community,” he said.

The Abbeyfield Society Goulburn Branch Chair Tony Egan said the funding was “fantastic” news for the group, which had been working towards the establishment of the house since it had been formed six years ago.

“Housing for people with a severe to profound intellectual disability is readily available, but there are few options for young adults with a mild to moderate intellectual disability,” he said.

“Moving from the family home to single unit accommodation can be daunting for these young adults, especially those who live outside of town on a rural property,” Mr Egan said.

“By living in the Abbeyfield type of housing with people of their own age and with similar desires, they will gain the confidence they need to integrate into the wider community,” he said.

Mr Egan said his organisation appreciated the role played by DADHC, which had suggested the formation of the group several years ago.

Dr Stephens said: “Everyone has been working hard to support this project, because it is exactly the kind of community service that is essential to an inclusive society.”

“Warrigal Care has shown great generosity in facilitating the acquisition and I congratulate Mr Egan and the Goulburn Abbeyfield Society for their efforts in securing this important funding,” she said.

For recent media releases by the Minister for Disability Services, click here

Joint Standing Committee on Migration: terms of reference announced

The Minister for Immigration and Citizenship, Senator Chris Evans, and the Parliamentary Secretary for Disabilities and Children's Services, the Hon Bill Shorten, have announced the terms of reference for an inquiry relating to the health requirement in the Migration Act.

The Joint Standing Committee on Migration will investigate the assessment of the health and community costs associated with a disability as part of the health test undertaken for visa processing.

The specific terms of reference are:

• Report on the options to properly assess the economic and social contribution of people with a disability and their families seeking to migrate Australia.
• Report on the impact on funding for, and availability of, community services for people with a disability moving to Australia either temporarily or permanently
• Report on whether the balance between the economic and social benefits of the entry and stay of an individual with a disability, and the costs and use of services by that individual, should be a factor in a visa decision.
• Report on how the balance between costs and benefits might be determined and the appropriate criteria for making a decision based on that assessment.
• Report on a comparative analysis of similar migrant receiving countries

Read the full text of the Minister's media release here.

Dating Skills Workshops - adults 25+

Liz Dore and her service Relationships and Private Stuff supports people to develop meaningful friendships, skills to enhance intimate relationships, and a positive awareness of their sexuality.

Dating Skills Workshops - adults 25+

Woodstock Community Centre, Burwood

3pm – 6pm Saturday 20th and 27th June

The total cost is $120 for six hours of training held over two consecutive Saturday afternoons and covering:-

• Self esteem
• When to ask a person out
• Communication skills
• Turn taking
• Greetings and farewells
• Touching, timing and consent
• Sex and safe sex
• Taking care of myself

Activities, worksheets and DVD’s will be used for structured education sessions in a group. Informal activities to reinforce learning will include going out for a social drink.

The cost is $120 for the two days training. BYO money for coffee or drink at a local pub.

To express an interest contact Liz Dore 0416 122 634 or lizdore@bigpond.com

To find out more about this service www.relationshipsandprivatestuff.com

A practical approach to teenage private stuff .....

This workshop, to be presented by Liz Dore of Relationships and Private Stuff gives parents and staff strategies for teenagers who have difficulties relating to others. It will include practical ideas to support them to have healthy relationships. The aim being to improve their understanding of issues such as:

• Puberty and self esteem
• Relationship and communication skills
• Appropriate and positive ways to sexual expression
• Sex, consent and safe sex
• Protective behaviours.

Thursday 18 June 10.00am – 12.30 or 6.00pm - 8.30pm

Woodstock Community Centre, Burwood
22 Church St, Burwood. Parking available (enter at 93 Fitzroy St)

Workshop cost $60 for one or $100 for couple. To register send cheque and form to Liz Dore PO Box 1060 Burwood North 2134 before 4 June.
For enquiries email lizdore@bigpond.com

Liz Dore’s Qualifications and Experience include:

Bachelor of Special Ed; Grad Dip in Counselling; Sexuality & Human Rights; Responding to Sexual Assault Training; 7 years counselling experience; 13 years education & training; and over 20 years experience working with people with disability.

Friendship skills development for people with disabilities

Family Planing NSW has announced some much needed relationship training events for young people with disabilities:

Friendship Skills Training For People With A Disability
Specifically for 13 – 18 year olds

With guest presenter Liz Dore from Relationships and Private Stuff

The six hours of training over two consecutive Saturdays covers:

• Self esteem
• Feeling good about myself
• Communication skills
• Turn taking
• Developing friendships
• Thinking about others
• Positive sharing
• Taking care of myself
  

Date: Saturday 30th May & 6th June, 2009
Venue: 13 Reserve Street Penrith 2750
Time: 11am - 2pm
RSVP: Applications and payment by 28th May 2009
Cost: $120 cash or cheques, payable to Family Planning NSW

Informal activities during the lunch break will be used to reinforce learning.

Contact Ben at FPNSW, The Warehouse on 4749 0516,

Email at benn@fpnsw.org.au or fax us on 4731 6787

Buddy Walk - Australia October 2009

Dates confirmed so far for Buddy Walk-Australia 2009 are:

Buddy Walk - Sydney: Sunday 11th October
- featuring international dance group LoveJunx from Japan

Buddy Walk – Canberra: Saturday 17th October

Check the DS NSW website regularly for more details, updates and dates for Walks in Newcastle, Wollongong, Wagga and other parts of NSW

Photographer Extraordinaire (UK)

Christopher Diedo, from Dartford, (from Kent, UK) shows a remarkable talent for photography, and doesn't let his Down's Syndrome hinder his art.

This BBC report links to an interview with Christopher, to a selection of his photographs, and to his own website.

Personalisation Research and Resource Library

This new and very useful online library is a series of web pages with a comprehensive range of links to resources on every aspect of "personalisation", defined as:

.... a major policy trend nationally and internationally, “personalisation” is about greater choice, voice, and control for people with disability, their families and carers as key partners in the design and delivery of care and support.

The links are categorised under the headings of "personalisation"; "person centred approaches" and "Individualised Funding / Packaged Support / Direct Payments".

This resource has been established and continues to be developed by National Disability Services - NSW. NDS is an industry peak body representing the specific interests of the non government organisations that play the major role in disability service provision in Australia.

Library Thursdays: Greg Palmer

Greg Palmer, writer, broadcaster and father of two boys, (one of whom has Down syndrome) died this week. How sad for his family and also for us that we won't share in his relationship with and views on life with Ned as Ned gets older. Palmer's most recent book about his son, Adventures in the Mainstream: Coming of Age with Down Syndrome, describes and discusses Ned's transition from high school to work. There are many books of life with young children with Down syndrome, but it is nice to read one from this age group. Palmer writes well and includes many humorous anecdotes. He clearly had a lovely relationship with his son(s).

One of my other favourites is Palmer's essay called The End of Cute (found at the Riverbend site--(search for "End of Cute")) about the way people interact with children with Down syndrome once they get "beyond cute". 

Palmer also wrote "He Canters when He Can" (written when Ned was 13) included in Uncommon Fathers: Reflections on Raising a Child with a Disability, Edited by Donald J. Meyer, Woodbine House, 1995.

I'm sad that Palmer died too young, but I am glad that he wrote and did all he did for his son and others.

Related:

Excerpt of Adventures in the Mainstream

Greg Palmer dies of cancer, Mercer Island Reporter

Dishing fries, tasting life at the drive-in: Video of book reading by Greg Palmer

Let us know if you want to borrow Adventures in the Mainstream or Uncommon Fathers or anything else.

Free to a good home: TugAlong bike trailer

One of our members is generously offering, free to good home (for use by some with Down syndrome) and a donation to Down Syndrome NSW:



Adult Bike and TugAlong trailer. Can be used as a single bike, is easy to transport on a car bike rack. I have used it with my daughter from age of 5-16years. Adult bike is an ordinary geared bike, nothing flash (has flat tyre). Needs to be collected from Sydney.



Contact DS NSW at info@dsansw.org.au or on 9683 4333 to be out in touch with the current owner.

Call for empathy for new families in reporting about births

The mother a little boy with Down syndrome was shocked to receive a copy of the notification of his birth in the post. NSW Health collects and publishes statistics on the numbers of babies born in NSW with a number of conditions (including Down syndrome).

Glenda Graban recognises the need to collect information in order to plan services, but she is lobbying for a change to the name of the register (currently called the Birth Defects Register) and to ensure that parents do not receive their copy of the notification unexpectedly in the mail. Her story is told by the Macarthur Chronicle here.

Down Syndrome NSW understands that most parents are not notified in this way, and joins Glenda Graban in calling for NSW Health to make sure that it does not. The national staticstics, collated by the Australian Institute for Health and Welfare, are published as the "Congenital Anomalies" report. We are interested in suggestions for a new name for the register, to take to NSW Health - should it be brought into line with the national report, for excample? Or can we do much better than that? Email info@dsansw.org.au with your thoughts.

Support in short supply for disabled: The Australian

Bruce Bonyhady co-authored the submission to the 2020 summit on the National Disability Insurance Scheme (NDIS) and now writes in The Australian, (on 7th May) on how the concept is gathering support:

AUSTRALIA'S disability support system is inequitable, fractured, under-resourced and slowly collapsing under the weight of its own inadequacies, while sub-optimally consuming billions of dollars of taxpayers' money each year.

......

This idea however is too important and far reaching to be left just to governments, people with disabilities, carers and disability organisations. It needs everyone's support. The NDIS would give essential security to all Australians because today, tomorrow or next week, you could suddenly be felled by a stroke, or develop multiple sclerosis or mental illness. Your teenage son could have an accident that leaves him severely brain damaged or quadriplegic. You or your daughter could give birth to a child who has autism, Down syndrome, cerebral palsy or other lifelong disabilities.

National insurance is the way forward because it recognises that disability, like anything else we now insure against, is a risk that can affect anyone, but will not affect everyone.

Click here to read the complete article.

Living With A Sibling With Down Syndrome: online radio interview

We've blogged recently about the new book "Fasten Your Seatbelt: a crash course on Down syndrome for brothers and sisters" here.

This link will take you to a short (just under 7 minutes) Boston radio interview with one of its authors, Dr Brian Skotko and Lizzy Myshrall, who both have siblings with Down syndrome.

Just click on the "Listen" button above the interviewer, Deborah Becker's, name.

World Without Words exhibition

Boonah Creative Arts Centre is holding an exhibition, World Without Words on Friday 22nd and Saturday 23rd May. On show will be paintings, prints and mixed media, celebrating the art and creativity of people with disabilities. All artwork is by the artists and teachers of Boonah Creative Arts.

Accessible Arts Gallery
Pier 4, The Wharf
Hickson Road
Walsh Bay

Friday 22nd May 4.30 - 8.00 pm
Saturday 23rd May 10.30 - 4.00 pm

Boonah Creative Arts Centre: 02 9499 5675 or email heidi.mecklem@dbb.org.au.

A program of Centacare Broken Bay

Accessible Arts NSW

Lives Lived: The lesson of Lewis Silverstein

This article from the Pittsburgh Post-Gazette's Lives Lived column is a nice tribute to a much loved brother.

Michael Silverstein talks about his brother Lewis's life, and concludes:

For more than five decades, my little brother exercised a great and wonderful power over me and my family. He selected people into our lives. Those who found it difficult, uncomfortable or unrewarding to deal with him moved on. But those who had time for us or those who found a place in their hearts for him brought gentleness and spirituality into our lives. His neighborhood became our neighborhood, and simple joys and kindnesses became more precious than great wealth and those things it might purchase.

I miss him terribly already, but I thank God I was able to share 52 years with the little fella.

Library Thursdays: Smiles for Life DVD

We have heard from a couple of people who have attended a Smiles for Life workshop at Westmead. They found the workshop very useful and highly recommend it. Smiles for Life have recently provided the library with DVD/CD sets. The set contains a DVD showing carers exactly how to clean a person's teeth with a special 3-brushhead toothbrush(which you can purchase at Westmead) as well as a CD with the workshop's Powerpoint presentations done by the Dentist on common problems, how to detect them and what to do about them as well as a dietician on the effects of food and diet on teeth.

If you are concerned about the dental care of your child or the person you care for, workshops are held each month (see earlier blog for details). At the workshop you can ask questions pertaining to your situation. However, if you are unable to attend the workshop, the DVD and CD may be of use to you. Let us know if you are interested in borrowing these.

Other dental related resources:

First Experiences: Going to the Dentist, by Sally Hewitt.

Dental care for the patient with Down syndrome by Dr. Elizabeth S. Pilcher at Down Syndrome Online

Dental care for children and adults with heart problems and Down's syndrome online at Down's Heart Group

NSW Referees Premier Squad Charity Fundraiser: Supporting Down Syndrome NSW

Football charity night at the Parramatta Eels v South Sydney Rabbitohs NRL game

WHEN: 6pm Fri 22nd May 2009

WHERE: ANZ Stadium Homebush

COST: $20 Adults / $10 Kids – Anyone can attend

TICKETS: Phone Matthew Hawkins on 0435 249 280 or email ballinaref_83@hotmail.com

All money raised will be donated to Down Syndrome NSW

Supported by ANZ Stadium, Down Syndrome NSW and NSW Rugby League Referees Premier Squad

2009 Times Square Video Call For Photos

A message from the National Down Syndrome Society in New York:


Celebrate the 15th Anniversary of the Buddy Walk® by entering the Times Square Video Contest (in New York). The video, which showcases individuals with Down syndrome from all over the world, will air on a jumbo screen in the heart of Times Square on September 26, 2009 at 10:30 a.m. The New York City Buddy Walk will immediately follow the video presentation at the Great Hill in Central Park.

Each year, the National Down Syndrome Society (NDSS) receives thousands of photo submissions for the Times Square Video Contest. Because the Buddy Walk promotes acceptance and inclusion of individuals with Down syndrome, the winning photographs feature children, teens and adults with Down syndrome working, playing and learning with friends and family.

For more information, or to submit a photo, please click here.


The deadline for submitting photos is July 15, 2009.
ONE photo per individual can be submitted to the contest. Please note that this is different than in the past. If you send more than one photo, NDSS will only use the first submission.

Winners will be contacted by a representative from NDSS via email starting the week of August 3, 2009. You will not be contacted if your photo is not selected. Photographs will not be returned.

Click here to view the 2008 Times Square Video.


For further questions about the contest, contact Rebecca Switalski, National Buddy Walk Director, NDSS at timessquarevideo@ndss.org


Wouldn't it be great to see someone from Australia included?

Federal "Inquiry into better support for carers" - report released

On Friday 1 May 2009, the Family, Community, Housing and Youth Committee launched its report on the inquiry into better support for carers entitled Who Cares ...?

Media Release, 1 May 2009:

Urgent assistance recommended for carers
Immediate financial relief for carers is a key outcome the House of Representatives Family Committee is seeking in its report ‘Who Cares ...?’ released today.

The committee has recommended increasing the base rate of income support for carers and has called for means testing thresholds to be reviewed.

With hundreds of carers speaking out about their desperate struggle to cope, the committee has responded with 50 recommendations to bring much needed help.

"Carers have told us they desperately need more financial assistance to cope with the additional costs of disability and caring, as well as greater access to respite for time out of the caring role," said Committee Chair Annette Ellis MP (Member for Canberra).

More than 1300 submissions to the inquiry told of carers and their families under serious financial stress, struggling to meet the everyday costs of living, including food, housing and transport.

"With so many carers indicating they are in crisis, urgent action is needed," Ms Ellis said.

The committee has recommended an urgent increase in respite and in-home assistance for carers, with current demand far exceeding supply.

Better coordination of support services is also needed, with the committee recommending a one-stop-shop for information on community care services, as well as support systems that are nationally consistent and more streamlined.

"The current array of support systems for carers is too complex," Ms Ellis said. "All three tiers of government are involved. Services cross several portfolios and are delivered through hundreds of government and non-government organisations. As one carer told us, "the service system is a dog’s breakfast’’. It’s confusing and frustrating for carers and increases the likelihood of administrative inefficiencies."

The committee supports more options for carers who want to manage the purchase of services themselves, including self-managed individualised funding packages. It has also recommended:

• a national education campaign to increase community awareness of the needs of carers;
• national carer recognition legislation and a national carer action plan;
• a national strategy to address the skills and training needs of carers;
• increased access to case management services for carers;
• strengthening options for flexible working arrangements for carers;
• supporting carers to find suitable employment after a period of absence;
• extension of preventative health care initiatives to include carers;
• and more counselling services for carers and their families.

ABC Radio National's Life Matters program examined the issues raised on Friday morning, including a talk-back segment. You can listen to the almost one hour broadcast here.

Pension rise guaranteed for disability support pensioners

From PWD E-Bulletin Issue 52, April 2009, published by People With Disability (Australia):

In March 2009, speculation intensified that the Commonwealth Government would abandon expected increases to the disability support pension (and other income support payments) in response to the rapid deterioration in Government revenues brought about by the World financial crisis. However, on 26 March 2009, the Prime Minister, Hon Kevin Rudd, provided a public assurance that a rise in the pension was guaranteed to disability support pensioners in the May budget.

This guarantee was also provided by the Minister for Families, Housing, Community Services and Indigenous Affairs, the Hon Jenny Macklin, who said “we have always been clear: age pensioners, disability support pensioners, carers and veterans will get a pension rise in the May budget.”

PWD welcomes the Government’s unequivocal guarantee of a rise in the disability support pension this year.

www.pwd.org.au/e-bulletin/PWD_E-Bulletin_52.html

New DADHC Director-General announced

The NSW MInister for Disability Services has announced the appointment of Jim Moore as the new Director-General of the Department of Ageing, Disability and Home Care, commencing on Monday 4th May 2009.

Mr Moore is currently a Deputy Director-General of DADHC. He replaces Brendan O'Reilly who retired as Director-General in April.

Non-invasive diagnostic pre-natal test release delayed

Sequenom, the US company planning the commercial release of its non-invasive prenatal test for Down syndrome and other conditions has announced that the release has been delayed because of questions about the internal handling of its research data. The release had been scheduled for June 2009. Sequenom shares are reported to have dropped dramatically in value with the news.

You can follow the news through Patricia E Bauer's blog, News and Commentary on Disability Issues.

Buy your Entertainment Book 2009 - 2010 and support DS NSW

BUY A BOOK TO BUY A BOOK - You can support the DS NSW library by buying the Entertainment Book 2009 - 2010.

The Entertainment Book is a restaurant and activity guide that provides special 25-50% discounts and 2-for-1 incentives from many of the best restaurants, hotels and attractions. It represents great value for family entertainment. The featured restaurants and other businesses do not pay to be included, they are selected based on awards, reviews and personal recommendations. See the Entertainment Book web site for more information.

You can order localised editions, including North Sydney, The Hills/Parramatta, Canberra, Central Coast/Newcastle/The Hunter, and there are interstate and even New Zealand editions that would make great gifts.

• Click here to download the Entertainment Book 2009-20109 order form for Sydney and North Sydney


• Click here to download the Entertainment Book 2009 - 2010 order form for Parramatta and the Hills

or contact Angela Adams at the DS NSW office on (02) 9683 1900 or email admin@dsansw.org.au for an application form.