Wednesday, 27 August 2008

Debate on draft policy on Maintaining Respite Capacity Policy

Release of the NSW Department of Ageing, Disability and Home Care's draft policy on Maintaining Respite Capacity has stimulated robust comment, much of it appearing in The Sydney Morning Herald's editorial and letters-to-the-editor pages:

Plans to oust the disabled anger parents Adele Horin (22/08/2008)

Horrifying gap between powerful and vulnerable Phillip French (scroll to the second letter on this page) (23/08/2008)

As much as I love my son, I had to refuse to bring him home Wendy Dickinson (25/08/2008)

Disabled overstayers in care a burden to other needy families Minister for Disability Services, Kristina Keneally (26/08/2008)

Problems in respite care stretch beyond overstayers four responses to Minister Keneally, from Brian and Helena Wilder ; Anne Elysee; Jeanette Moss; Mike Sprange (27/08/2008)

News article about an 80 year old man with Down syndrome

We are asked several times each year about the greatest age that a person with Down syndrome has reached, and each year we hear about several people living into their 70s. There is great interest in the health of older people with Down syndrome, and in what we can learn about the ageing process.

The Waseca (Minnesota) News reports about Bert (Junior) Holbrook, who celebrated his 80th birthday last Sunday. Mr Holbrook was raised at home, in a time when that would have been unusual, and enjoyed the benefits of a small community. His health has deteriorated with his advanced age, and he is now a valued resident at Elm North, a health care facility in the town. He lives a remarkably active life, and might be the world's oldest man living with Down syndrome.

Click here for the article and a photograph.

Sunday, 24 August 2008

Let's NOT Boycott Tropic Thunder, to make the point

The movie, Tropic Thunder has opened here in Australia, to barely a ripple of protest, less than rave reviews (but it hasn't been slammed in the popular press, either), and an occasional nod to protests by disability activists in the US - so it seems it will have the expected audience, will certainly make money, and have significant competition from much better movies at the same time.

Pam Wilson, a writer on disability issues (and the mother of an adult son who has Down syndrome) has had Second Thoughts on the Tropic Thunder Boycott . She says in part, I realized I want everyone in the USA to see Tropic Thunder. Every neighbor, school principal, police officer, store clerk and medical professional should see this movie while it is in theaters. I want them to know why people with disabilities and their families were shocked and angry, deeply hurt and disappointed - and why they called for a boycott of this film and DVD.

It doesn't matter if audiences understand while watching that this movie, written to poke fun at Hollywood insiders, causes overwhelming distress to worried moms of newly diagnosed babies and alarms families of kindergartners to high school seniors ready to transition to ordinary adult life. School principals and parents of our children's classmates need to know what anti-bullying progam in their schools are up against.

If everyday people don't see this movie right now, what we write will not make sense to them. Tropic Thunder has an 'R' rating and movie reviewers give it five stars. They can't expect us to be reliable reporters when none of us wants to see the film and those who have say it's worse than expected. How can we expect the general public to understand the dread we feel at the thought of the 'extras' that will be available when the DVD is released, when they are unaware of the excesses of the basic picture?

Click here to read the full text of her article on BellaOnline

Thursday, 21 August 2008

Video response to why words hurt

Click here for a very short clip, made about "people with intellectual disabilities who stand to be hurt by thoughtless, cruel names they might be called", and the only "R" word they need. It is a much, much better film.

Thank you,
Will Schermerhorn and the ARC of Northern Virginia for making it freely available to the world.

Sometimes we are at a loss for the best way to respond when someone we care for is teased or bullied, and we resort to recommending that they "just ignore it" - we recommend Dave Hingsburger's booklet "The R Word" for anyone looking for a more effective alternative. It is a very small book - just 25 pages - but a powerful source of effective thinking and action to help you support the person who has been bullied. If you are member of Down Syndrome NSW, you can borrow a copy from our library, or purchase it from (it's not on the book list, but email them)

Wednesday, 20 August 2008

John Stephens, 26, has his say on the use of "retard" in Tropic Thunder

We've heard a lot about "Tropic Thunder", much of it extremely uncomfortable.

We've heard from the stars, writer, producers, people who think it is appalling, people who think it is top comedy, disability rights activists, many families and others with strong opinions of all colours.

Now Patricia Bauer has included in yesterday's blog entries, a very telling piece written by a young man with Down syndrome, John Franklin Stephens. Read the extract here and a link to the full article in the Roanoke Times is included.

Enough said, and very well said.

Tuesday, 19 August 2008

Case study of an unusual 70 year old man with Down syndrome

The Americian Association on Intellectual and Developmental Disabilities has published a case study of a man with Down syndrome who has reached 70 with no evidence of cognitive decline. He is participating in a 20 year longitudinal study of hundreds of people with Down syndrome, and is the oldest person studied in this detail without signs of dementia.

The study concludes:

The processes regulating aging and dementia are extraordinarily complex, and it is unlikely that a single mechanism can fully explain the spectra of change and stability that occur with successful and unsuccessful aging in individuals with Down syndrome. As more information is discovered about the genes on chromosome 21, their products, the impact of the occurrence of an extra copy of chromosome 21 on the rest of the genome, and the effects of nongenetic factors, researchers will achieve a better understanding of the underlying factors and mechanisms that contribute to all aspects of phenotypic variability associated with Down syndrome (see Jenkins & Velinov, 2001). This will lead potentially to better strategies for minimizing disability and for promoting successful aging to an even greater degree than has been seen over the last several decades.

The full text is available here.

Krinsky-McHale, S, et al, Successful Aging in a 70-Year-Old Man With Down Syndrome:A Case Study, Intellectual Developmental Disabilities, 46: 3: 215–228 June, 2008

Monday, 18 August 2008

"Tropic Thunder" - controversial movie opens in Australia this week: 21st August

The controversy about the new movie "Tropic Thunder" continues. An active campaign by disability groups and individuals in the USA leading up to and after its premiere in LA last week has generated some heated exchanges, but has not resulted in any changes to the movie, or any recognition from the producers that there is anything they should even reconsider.They continue to claim that opponents have no sense of humour and do not understand satire .....

Patricia Bauer continues to run the most comprehensive coverage, and has the advantage of actually having seen the movie (she did not like it):

None of the peak disability organisations in Australia or the UK appears to have taken up the issue - and there may be a good argument for not drawing even more attention to the movie. However, it might be one that you want to at least discuss with the moviegoers in your household.

Wednesday, 13 August 2008

Gastrostomy Information and Support

This website and forum could be useful for the small number of families whose children with Down syndrome have extreme feeding difficulties, and have to consider or actually have a PEG (percutaneous endoscopic gastrostomy) for temporary or long term nutrition:

The newly launched online GISS Forum can be accessed through the GISS website:

“This forum is for information sharing, seeking support and raising issues related to gastrostomies and jejunostomies.”

The website includes contact details for the NSW branch of GISS, and the services GISS provides.

Tuesday, 12 August 2008

The Other Film Festival: Melbourne 3 - 7 September 2008

What are you looking at? New cinema by, with and about people with a disability

35+ Australian and international films - 20 sessions and forums

Melbourne Museum, Nicholson Street, Carlton
presented by Arts Access Vicoria

Now in its third year, theis is Australia's only disability film festival!

The program includes three screenings of the short film Yolk, starring Audrey O'Connor, which debuted at the 2007 Sydney Film Festival's Accessible Cinema program.

All festival details are available from the website:

If you are in Melbourne during 3 - 7 September, it will be well worth a visit.

Monday, 11 August 2008

After school support for parents of teenaged students with disabilities

News Release, 10/08/2008: The Hon. Kristina Keneally MP, Minister for Disability Services

The NSW Government will launch a one million dollar pilot program called Teen Time – After School and Vacation Support for Working Parents, to give parents of teenagers with an intellectual disability a boost in respite so they can pursue jobs and study.

“The two year, $928,000 pilot of Teen Time, has been developed in direct response to the needs of carers of secondary students with an intellectual disability.

“The program, to be launched within the next two months, will be available to parents and carers of up to 81 teenagers with intellectual disabilities who need a helping hand so they have the time to get a job, keep a job, or do some study to help them qualify for a job.

“Initially the Department of Ageing, Disability and Home Care (DADHC) will carry out the trial in four locations – Epping, Kellyville, Merrylands and Werrington. It will cover three hours a day for 40 weeks of the year at each location, plus 10 hours a day for up to nine weeks of school holidays.”

We will trial Teen Time to see if it improves support available to the parents who need it, and if the pilot shows promising results we will look at rolling it out at other locations,” Ms Keneally said.

Sunday, 10 August 2008

NSW Dept Ageing Disability and Home Care seeks feedback on two draft policies

Draft Allocation of Places in Supported Accommodation: policy and procedures
This draft policy is to replace the existing Placement of Clients in Group Homes policy, in line with the commitment made under Stronger Together, a new direction for disability services in NSW 2006-2016.

It details the processes for being placed on the state wide accommodation register, declaring a vacancy, allocation committees, appeals, refusal of offers and transition to a placement.

Draft Maintaining Respite Capacity Policy
This draft policy outlines DADHC's approach to relocating clients who remain in respite beyond their planned stay to permanent accommodation services. The policy has separate sections for children, young people and adults.

For both draft policies, DADHC is seeking feedback from people and organisations with an interest in accommodation services for people with a disability.

Down Syndrome NSW will submit comments, but individuals can also comment.

Click here to download both documents from the DADHC website.

The closing date for feedback is 12 September 2008.

Saturday, 9 August 2008

World first as Australian indie-band invited to play United Nations in New York

Rudely Interrupted have been invited by the United Nations to perform in the Dag Hammarskjold Auditorium on the 3rd of December 2008 to mark International Day for People with Disabilities.

Rudely Interrupted are one of Australia's truly unique indie rock acts. 5 out of the 6 members share a range of both physical and intellectual disabilities (Blindness, Deafness, Aspergers, Autism and Down Syndrome) but most importantly, a common interest in self expression through music. Their achievements, both personal and professional to date are extraordinary.

A born performer, bass guitarist Sam who has Down Syndrome loves to show off and wants to be a famous rock star. “I used to play drums at school. But this is the first time I've played bass. I want to fly over the audience with fire and explosions and lightning.”

Tuesday, 5 August 2008

New website offers information at diagnosis of Down syndrome

Brighter Tomorrows is an initiative of of the Interdisciplinary Human Development Institute, University of Kentucky, providing families with balanced and accurate information about receiving a diagnosis of Down syndrome either during their pregnancy or at birth.

It is a valuable contribution to worldwide efforts to meet the needs of parents for information as both technology and professional practice see prenatal testing much more widely implemented than ever before. Families receiving the diagnosis at or soon after birth increasingly turn to the internet for instant access to the information they seek.

A link has been added to the Down Syndrome NSW web pages for New Parents.

Monday, 4 August 2008

Tropic Thunder: a movie sure to offend?

A new Ben Stiller movie, Tropic Thunder is scheduled for release in the USA on 13th August. The intended humour of the script leans heavily upon lampooning people with intellectual disabilities, and makes frequent use of the term "retard".

Hardly surprising then that it has caused controversy even before it opens, and that people with disabilities and their advocates are organising protests and meetings with the film's makers.

Patricia Bauer's blog, News and Commentary on Disability Issues is covering the campaign, with five posts to date, and many comments, the most recent is here, followed by links to earlier posts.

Updated 5/08/08: A new post on 4/08 calls for "reader's advice" on what the movie's producer's and distributors should be asked to do, and offers some excellent suggestions. A meeting between disability advocates and Dreamworks is scheduled for Wednesday 6/08 (Pacific Time).

The movie is scheduled for release in Australia from 21/08/08.

Sunday, 3 August 2008

Better Care for our Carers: Overwhelming response to Commonwealth inquiry

Media release issued 28th July
by Annette Ellis MP, Chair, and Hon Judi Moylan MP, Deputy Chair
House of Representatives Standing Committee on Family, Community, Housing and Youth

The House Family and Community Committee has been delighted with the overwhelming response to its inquiry into better support for carers.

Carers are those who look after others, usually family members and friends with a chronic illness, disability or frailty. So far the Committee has received some 1,200 submissions to the inquiry, most of these from carers themselves. Because of the demands placed on carers they are often exhausted, socially isolated and under financial pressure as they find it difficult to access the jobs market.

"The fact that so many carers have taken scarce spare time to contribute to the inquiry indicates their levels of concern" said Committee Chair Annette Ellis. Ms Ellis reminded people that the inquiry was a public process and that as soon as the Committee meets to formally receive these submissions, they will be placed on the Committee’s website for all to read.

Public hearings for the inquiry have already begun. These hearings provide an opportunity for the Committee to talk first hand to carers and to the groups that support them. Ms Ellis reported that the first hearing, in Perth on 23 July, had been a great success. A feature of the hearing was a round table meeting with individual carers which enabled them to raise their concerns with the Committee in an open public debate. Ms Ellis said that the Committee would repeat these round table meetings at all other hearings, including those already scheduled for Sydney, Melbourne, Adelaide and Brisbane.

Ms Ellis predicted that the Committee would also travel to other capitals and to rural areas. The submissions received so far indicate that carers in regional and remote areas face even greater challenges of isolation, finding services and respite.

People interested in the inquiry are encouraged to check the Committee website regularly: . Submissions will be made available as quickly as possible and details of future public hearings will be posted. Transcripts of the public hearings will also be made available shortly after the hearings are held.

Ms Ellis said the inquiry was an important and timely opportunity for carers to have their say in a public process. The Committee looks forward to meeting more carers, listening to their concerns and discussing ways in which the government can offer them better support.

Carers NSW reports that it will be attending the inquiry committee's public hearing to be held in Sydney on Wednesday 6 August, represented by Elena Katrakis, CEO, and Sheree Freeburn, Aboriginal Policy and Development Officer. Carers NSW also nominated carers to participate in a Carers Roundtable that will form part of the hearing.

Carers Australia Virtual 2020 Summit throughout August

Carers Australia has launched an online "2020" - a summit just for those who care for others who are elderly, physically or mentally ill, and/or have a disability, modelled after the April 2020 summit in Canberra. It is now live, and will continue throughout August.

The purpose of the online 2020 is to look for and explore big ideas that will support Australia’s growing population of carers and their families.

Participation is open to anyone who wishes to comment.

Click here for the Carers 2020 website, to learn more and to register to participate.

Senator Helen Coonan wrote about the Carers 2020 in her column for "By Invitation Only" in today's Fairfax press - click here to read the column.