Address details

Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Tuesday, 31 August 2010

Seeking Better Futures for People with a Disability who are Ageing

with international guest speaker:
Associate Professor Matthew Janicki

Monday 13th September 2010: 9.30am to 2.00pm

Charles Blunt Conference Room
Royal Rehabilitation Centre Sydney
59 Charles St

Family members: free
Professionals: $44

Matthew P. Janicki PhD is a research Associate Professor of human development at the Institute of Disability and Human Development at the University of Illinois at Chicago, and serves as Director for Technical Assistance for the Rehabilitation Research and Training Center in Aging with Developmental Disabilities – Lifespan Health and Function at the University. Formerly he was Director for Aging and Special Populations for the New York State Office for People with Developmental Disabilities. Dr Janicki was a Joseph P. Kennedy Jr Foundation’s Public Policy Leadership Fellow, spending a sabbatical year at the National Institute on Aging and the United States Senate, where he helped introduce changes in the Older Americans Act, relative to access by people with disabilities. He is the author of numerous books and articles in the area of aging, dementia, public policy and rehabilitation, with regard to people with intellectual and developmental disabilities and has lectured and provided training in aging and intellectual disabilities across the world.

The Futures Alliance is a cooperative of community representatives from disability and aged care providers in NSW which includes representation from consumers, academics and peak bodies. The purpose of the Futures Alliance is to remove boundaries and to maximize community resources to deliver improved options for people with a disability who are ageing.

All enquiries: phone: Centre for Disability Studies, 8878 0500 email: 

Thank you to our 2010 City2Surf Champions!

An extraordinary101 runners signed up for Team Down Syndrome in the City2 Surf in August, raising valuable funds as they ran. Our thanks go to each and every one - the awareness you raise by participating in this much loved community event is invaluable.  Our thanks also go to everyone who sponsored our runners.
Some highlights:
Daniel Fleming - my goal this year was to beat 60 minutes. The cool temperature on the day was perfect for running. Despite a large blister on each foot and legs that became sorer with each kilometre, I scraped in at 59 minutes and 33 seconds. Naturally, after such a hard run it is important to rehydrate, which I did immediately at a nearby pub.
Lena Oshana - I’m very sore, and had to wear my slippers to work today, but I’m all good! I had a great day yesterday and I will do it all again next year. We raised $1463.00 for Down syndrome NSW, I want to hit 5K next year!

Brad and Bethany Dewhurst - Well Bethany and I finished the City to Surf in 2 hours 39 minutes .... she did great for an 8 year old. It was beautiful day. So many people. Afterwards the queue for the bus must've been half a km long so we did the long walk to Bondi Junction. It was great to do it with her.

Up, Up Toastmasters

for people with Down syndrome, 18 and over

If you are 18 and over and would like to learn how to speak confidently, and be part of a group that has similar interests to yourself, and would like to make new friends. Come and join our Toastmasters group on the last Saturday of each month, from the 25th of September at 10.30am till 12.30pm.

Last Saturday of the month
Time: 10.30am to 12.30pm

80 Weston Street,
Harris Park NSW 9117.

Maria Short 02 9841 4403 Email:

Monday, 30 August 2010

Communication and Supporting Skills Workshops: for parents and carers

Places are still available in this series of eight workshops, presented by the Centre for Disability Studies, at Epping, during September and October, beginning next Monday, 6th September. 

Details and contact links are in this post -  call or email now.

Leaders call to create portfolio for disability

An alliance of 10 leading Australian disability groups have called on Prime Minister Julia Gillard and Opposition Leader Tony Abbott to commit to the creation of a dedicated Ministry for Disability if they win the election.

The alliance, comprising the organisations listed below, has called on all parties to indicate their support for Australians living with a disability by committing to this essential and emblematic measure.

A spokesperson for the alliance said an estimated one in five Australians* was living with a disability, representing a considerable voice at the ballot box.

“Both parties have indicated they believe disability is a critical social issue by supporting the Productivity Commission inquiry into a National Disability Long-Term Care and Support Scheme, or NDIS,” the spokesperson said.

“Both parties are aware that Australians with a disability have an expectation that this inquiry, the first exploration of its type since Federation, will initiate a totally new,more appropriate approach to supports and funding that will lead to better lives for Australians with a disability and their families.

“The development and delivery of this completely new approach can only be achieved under the leadership of a Minister with a portfolio devoted to disability, in the same way the critical issue of population growth has been recognised with its own dedicated ministry.”

* published in 2003 Australian Bureau of Statistics Survey of Disability, Ageing and Carers.
Disability was defined as any limitation, restriction or impairment which has lasted, or is likely to last, for at least six months and restricts everyday activities.

Contact for further information and comment:
David Barbagallo, CEO, Endeavour Foundation: 07 3908 7201 or 0411 404 182
Mark Henley, CEO, Spinal Injuries Association: 07 3391 2044 or 0419 725 686

Spinal Injuries Association
Endeavour Foundation
Children with Disability Australia
AEIOU Foundation
Cerebral Palsy League
National Disability Services
Lifeline Community Care
Life Without Barriers

Sunday, 29 August 2010

Meet Nickolas… biker, camper, adventurer

Here's a great online magazine story about a ten year old boy, Nickolas, with Down syndrome who regularly rides quad bikes and camps with his adventure-loving family in the Californian desert. 

His Dad says ... " having a child with Down Syndrome has not stopped us from pursuing the things and activities we enjoy. For some families it may be Martial Arts, another Horseback Riding, and another, travel. For us it has been camping, riding, and other outdoor related activities. While we may have to make adjustments and slow down, we don’t give up on the things we enjoy. Eventually we find a way to accommodate and include Nickolas".  Read the full story and see the pictures here.

In the comments, Nickolas's father writes,

"We have alot of fun riding with the kids, and ironically, the comprehension, concentration, and fine motor skills, necessary to ride, are the same skills that we are working on in the classroom at school.

We have worked with numerous Child Behavioral Specialist’s, and they ALL say that riding a ATV “fires/triggers” all the same neurons in the brain, that we use in the classroom. They say that it is actually GOOD for him to ride, because he becomes very intense in his focus, and concentration, and as a result, he is able to “stay on task” for longer periods of time. They say that you couldn’t PAY for any better therapy!"

Saturday, 28 August 2010

UA researchers create tests to assess cognitive function specifically in people with Down syndrome

Prof Lynn Nadel, Regents Professor of Psychology at the University of Arizona, has been researching,  teaching, writing and talking about the impacts of brain development in people with Down syndrome for many years, and is regarded as a leading authority internationally. His latest research publication. with an equally illustrious list of co-authors, has enormous implications in the practice of psychometric assessment.
The University of Arizona News reported this week:
Neuroscientists in the Down Syndrome Research Group at the University of Arizona have created a battery of tests that quickly aid in the assessment of the cognitive abilities of persons with Down syndrome. The University of Arizona collaborated on the development of the tests with colleagues at Johns Hopkins University and Emory University.

The tests – a series of computer exercises that are not language dependent – offer clinicians and other researchers a new tool that can help determine both the developmental trajectory of those with Down syndrome and aid in devising drug and behavioral interventions. Read the full UA report here.

The study, "Development and validation of the Arizona Cognitive Test Battery for Down syndrome," is published in the Journal of Neurodevelopmental Disorders, with the full text available for free download here.

Jamie O. Edgin, Gina M. Mason, Melissa J. Allman, George T. Capone, Iser DeLeon, Cheryl Maslen, Roger H. Reeves, Stephanie L. Sherman and Lynn Nadel, Development and validation of the Arizona Cognitive Test Battery for Down syndrome Journal of Neurodevelopmental Disorders, Volume 2, Number 3, 149-164,  DOI: 10.1007/s11689-010-9054-3

Friday, 27 August 2010

People with disabilities and the closure of residential centres

Media release issued by the NSW Ombudsman, 26th August, 2010:

In 1998, the NSW Government announced that all residential centres housing people with disabilities would close by 2010. Today, over 1,600 people with disabilities in NSW continue to live in residential centres, also known as institutions.

The NSW Ombudsman, Bruce Barbour, has today tabled a report that examines this situation and its impact on the lives of people in those centres.
The report draws on extensive work by the Ombudsman in looking at the circumstances of people living in centres operated by Ageing, Disability and Home Care (ADHC), and finds that people with disabilities living in these facilities do not have the same basic rights as other members of the community.
‘People with disabilities are entitled to the same rights and opportunities as the rest of us,’ said Mr Barbour. ‘This includes being able to live in and be part of the community, to choose the way we want to live our lives, and to participate in decisions that affect us.’
‘However, I have found that this is not currently the case for people with disabilities living in residential centres. The nature of institutional care – including the housing of large numbers of people on one site; segregation of the centres from the broader community; and structured and inflexible routines – restricts fundamental rights and opportunities.’
‘The Government’s decision to close the residential centres is sound, but progress over the past 12 years has been too slow. This situation needs to change as a matter of priority.’
In June, the Ombudsman and the Disability Council of NSW hosted a community forum to discuss progress in closing residential centres, which was attended by close to 300 people. The report outlines the critical messages from the forum that should inform government planning for closure of the centres and the provision of opportunities for people with disabilities to receive support in, and as part of, the community.
The report notes the clear message from people at the community forum that there needs to be genuine partnership with people with disabilities and their families; and real choice from a flexible and wide range of accommodation and support options.
‘I note the considerable work underway by ADHC and the NSW Government in planning for the second half of Stronger Together – the Government’s 10-year plan for improving disability services,’ said Mr Barbour. ‘The work of my office indicates the critical need for this planning to include the closure of residential centres, and expansion of the range, availability and flexibility of accommodation and support options in the community for people with disabilities.’
The 28 page report, People with disabilities and the closure of residential centres (August 2010) can be viewed and/or downloaded from here

Sydney Morning Herald /AAP report, 26th August, 2010:  Disabled denied rights: NSW Ombudsman

NDIS - mesaage from John Della Bosca, Campaign Director

Hi everybody. My name is John Della Bosca. As you may have already heard, I’ve been appointed Campaign Director for the National Disability Insurance Scheme. I am absolutely delighted to have the opportunity to work on something I feel very passionate about.

Over the next week or two I’m going to be spending some time making a scan of the landscape and discussing opportunities for the next stage of our campaign. I look forward to chatting to as many of you as possible - I will be taking the opportunity to pick the brains of as many colleagues as I can as we consider our next steps.
But given the extraordinary events of the last week I think a few initial observations might be helpful.
I came on board on August 9 in the middle of the federal election campaign. During the campaign both parties reaffirmed their support for a National Disability Insurance Scheme (NDIS), and again promised to take seriously the findings of the current Productivity Commission Inquiry into Disability Care and Support. The fact that announcements regarding disability were made during a hectic campaign and received considerable media coverage is a promising step in the right direction.
The campaign provided an opportunity to achieve an important goal - both parties and the Greens went on record supporting an NDIS. Support for an NDIS as a point of consensus and not just a curiosity for the five weeks of the election campaign is a critically important outcome.
Hypothetically if the NDIS had been a major point of difference in the campaign the adrenaline would be flowing - but the NDIS could have become an all or nothing bet on the election outcome. The exchange of blows might have severely compromised an incoming government’s policy options.
The bi-partisan support creates an opportunity to firmly establish an NDIS as a point of consensus in the contemporary political culture. In summary - winning relative arguments with government about exactly what we want should, in theory, be easier than winning a threshold argument about whether an NDIS should happen at all.
Bi-partisan support has also become more important in the face of the final outcome, with the critical role the independents will now play in the federal parliament.
A strong qualification on this optimism is, of course, that both major party responses are contingent on the Productivity Commission inquiry. This of course provides “wriggle room” for any incoming government, which means we need to continue to find new ways to keep the pressure on. Anticipating various possible outcomes and increasing public awareness and government interest in our campaign in the interim is a key objective between now and February.
As part of the campaign we have begun conducting some research to inform our work. The research demonstrated that while coverage of disability during the federal election campaign raised interest and awareness in the short term, the effect was short lived. This is further evidence of our need to get out and let the Australian public know what the problems are and how the NDIS will solve them.
The research also demonstrated that while awareness of the difficulties faced by people with a disability, their families and carers is reasonably low, when the situation is explained they are generally supportive of change. They are convinced that people with a disability and their families deserve a fair go as fellow Australians, and they recognise that supporting people effectively will benefit the nation economically and socially. Again this is positive, and means we need to redouble our efforts to make the general community more aware of all the benefits of implementing an NDIS. We will of course continue to do our homework and conduct further research as the campaign continues.
Regardless of the final outcome of the federal election, it is clear we have a massive task ahead of us and I welcome the opportunity to discuss your views on the best way to achieve our mission. My email address is  - I look forward to hearing from you.
John Della Bosca
26 August 2010

Advertisement to recruit members for the NSW Carers Advisory Council

Ageing, Disability and Home Care has posted this advertisement on their website:
People with knowledge and experience relating to carers are invited to apply for membership of the NSW Carers Advisory Council. Up to 12 members will be appointed. Members will normally serve for 3 years. Sitting fees and associated costs will be payable to members who are not public sector employees.
The NSW Government is establishing the NSW Carers Advisory Council under the NSW Carers (Recognition) Act 2010, to advance the interests of carers and to review and make recommendations to the Minister on legislation, policy or other matters having a significant impact on carers.
Members will be selected to ensure that the diverse needs and interests of carers are represented including (but not limited to) Aboriginal carers, carers from culturally and linguistically diverse backgrounds, people caring for a family member with a physical or intellectual disability, young carers, ageing carers, carers of people with mental illness, carers of people with a chronic illness and carers from both metropolitan and rural/remote areas.

Selection criteria
Applicants for membership of the Council will need to have:
  • experience as a primary carer;
  • capacity to represent the broader views of carers;
  • demonstrated commitment to the wellbeing of carers;
  • good communication skills.

 Further information
For an information package on how to apply for membership, please contact Jenny Noble, Executive Assistant, Respite and Carers Directorate, Ageing, Disability and Home Care, NSW Department of Human Services on (02) 9277 5618 or at

Applications close at 5 pm on Monday 13 September 2010.

NSW Government reaffirms commitment to person centred approach to disability services

This media release was issued to coincide with the Minister's address to The Big Event, being held today in Penrith, NSW:

Media release:  27 August 2010
Peter Primrose MLC
Minister for Ageing, Minister for Disability Services
Minister for Youth, Minister for Volunteering

Keneally Government reaffirms commitment to person centred approach to disability services

The Minister for Disability Services, Peter Primrose, said today that people with a disability should be “front and centre” in making their own life choices.

He said this view was expressed ‘loud and clear’ at the 13 consultations held across the State on the next 5-year phase of Stronger Together.

“People with disabilities, their families and carers are demanding more choice and I say to them, we hear you,” said Mr Primrose.

“People want person centred approaches, including individualised funding packages and we will deliver that as part of Stronger Together 2.”

“Its no longer about ‘if’ we do it, its about how we do it and making sure we get the model right.”

“That’s why this was at the centre of our consultation on the next 5-year phase of Stronger Together and that’s why we’re now doing the detailed planning as part of the Stronger Together 2 framework,” he said.

He said that the NSW Government had provided $17 million to National Disability Services to establish the Industry Development Fund, which would help service providers introduce more flexible and adaptive services that were responsive to individuals.

“We also have provided $600,000 over three years to the Resourcing Families Project that provides information and seminars for families of children aged up to 18 about using self directed and self managed funding.

“People with a disability and their families will need more information about the services and supports available within the service system and in the community so that they can make informed choices about the services they use and support they access.

“Pilot programs that we have been undertaking will inform us about ways in which information can be provided and how individuals and families can be supported to develop person centred plans which enable them to set life goals based on their strengths and capacity.”

Mr Primrose said that experience with individualised support options had shown that “one size will not fit all”.

“Individuals and families will require a variety of delivery options to choose from in order to meet their needs."


Media release from the NSW Premier's office:   Wednesday 25 August, 2010:

Premier Kristina Keneally today announced a three-tiered, $1 million boost in services for NSW kids with a disability or development disorder, their families and carers.

The package focuses on providing extra assistance to young people before they enter school, and help them build relationships once they are in school. It incorporates:

• An extra $690,000 over three years for Lifestart, a non profit organisation that provides early intervention services to kids with a disability;

• $300,000 for an Autism Australia documentary that will increase the understanding of autism amongst young people; and

• The Play for Kids project, which will raise awareness of the importance of play in the lives of children with a developmental delay or disability.

“We know providing support as early as possible leads to children with a disability having the best chance in life,” Ms Keneally said.

“The programs I’m announcing today are about giving kids some extra help before school, then helping them to integrate into the school environment.”

The extra $690,000 will be directed to Lifestart, which delivers early intervention services, support for families and help for kids to transition to school.

The extra funding will mean they can provide 28 extra early childhood intervention places.

Lifestart is a non government organisation which has provided services for 350 children a year in seven locations across Sydney since 1996.

As a result of today’s announcement, Lifestart will now receive more than $6 million over the next three years.

“The NSW Government is building an inclusive society that enables people with a disability to fulfil their potential,” Ms Keneally said.

“That’s why we support organisations such as Lifestart to build a brighter future for children with a disability and their families.

“The $690,000 in funding they will receive over the next three years will help them to help more children, giving them the best start in life.”

Lifestart will also deliver Play for Kids, a play-based early intervention project which helps children who are aged under six years old to improve social and learning skills.

Play for Kids will be delivered using digital media, including a website, facebook, youtube and tweeting, to raise community awareness across NSW.

The website will enable families to download games which can be used as a therapy tool in the home.

“Play is a valuable way of helping children with a disability or developmental delay to strengthen relationships and develop life skills,” Ms Keneally said.

“This is about teaching kids who need extra help, how to build friendships and relationships, and the communications skills that they will need in later life.

“We are partnering with Lifestart to deliver this service, based on their expertise in delivering disability services in Sydney for the past 14 years.”

The $300,000 grant to Autism Australia will allow them to produce a documentary to be aired to NSW school students, which:

• Promotes better understanding in schools of Autism Spectrum Disorders; and

• Explains how to build friendships with people with these disorders.

Ms Keneally said the documentary will aim to explain autism to children, dispel myths, and build more tolerance and understanding of autism amongst school children.

“The documentary will answer questions young people have about autism, and show it is not a barrier to friendship,” Ms Keneally said.

“The film will send a message that kids with an Autism Spectrum Disorder should be accepted, supported and encouraged to be part of the class and school life.”

It is expected that the documentary will take 4-5 months to produce, and could be in classrooms by early next year.

The autism awareness documentary will complement a range of other initiatives currently being provided by the NSW Government to help young people with autism.

Over the past three years, the NSW Government has invested $17 million in services for young people with autism and their families, which will increase to $21 million this year.

Minister for Disability Services, Peter Primrose, said included in the $21 million for this financial year is the establishment of the Autism Early Years Demonstration Service.

The new service will provide 20 child care places for children with autism and support for another 50 children in Western Sydney.

“What we are doing is here is getting in early, emphasising integration of kids with autism spectrum disorders before they even reach school age,” Mr Primrose said.

“This is about helping build an inclusive society that is accepting of young people with autism as members of the community.”

Mr Primrose said he was particularly pleased about the new Autism Australia documentary.

“This will support kids with autism spectrum disorders to integrate into the education system,” Mr Primrose said.

“That will help them build relationships with other students, which is a skill they will take through their lives.”

For more information, go to  and

Background notes

• This year the NSW Government will provide $41.5 million, through Ageing Disability and Home Care (ADHC), to support young people with a disability and their families.

• That includes more than $23 million to support families with a child aged up to six years with a disability or developmental delay, through early childhood intervention services.

• This funding supports a range of services and programs in targeted areas across NSW, including:

o The Autism Early Childhood Development Project, though which $2 million will be spent on early intervention, community education and screening services;

o The Autism Early Years Demonstration Service, a four year $6.8 million program to provide child care services for 70 kids with autism;

o The Autism Early Childhood Intervention Initiative, through which $4.8 million will be spent on professional development and behaviour intervention services;

o The Helping Troubled Kids initiative, a $5.9 million program which delivers mentoring, leisure and case management for kids with problem behaviours; and

o Aspect adolescent support, a $2 million program to provide case management services for kids aged 12 to 18 years old who have autism related behaviours

Thursday, 26 August 2010

Library Thursdays: From other associations - New Zealand and Canada

The New Zealand Down Syndrome Journal Winter 2010 has a few interesting articles which include:
  • Hamish Learns to Ride by Stephanie Gilbert (the process this family went through in Hamish learning to ride a bike)
  • Teen with Down syndrome gets his [Driving] license

  • New Zealand celebrations of World Down Syndrome Day

  • Many family stories: Ryan's Story, Jonah's First Birthday, Matthew and Thomas Diary

  • My Sister Jordan (a poem by a 12 year old sister)

  • Reflections on the World Down Syndrome Congress last year

  • Down Write Brilliant (magazine by and for people with Down syndrome)
The Canadian Down Syndrome Society (Summer 2010 edition) includes:
  • Breastfeeding myths
  • Interview with filmmaker Shira Avni and artists who created the film, Tying Your Own Shoes

Voices- Canadian magazine by and for people with Down syndrome (Health and Wellness issue)

Also from the Canadian Down Syndrome Society in the library is Then and Now, a film which explores the views of self-advocates and how they are working to change the community. They speak about inclusion, relationships & marriage, housing, employment, education, sports & recreation and all aspects of living.

If you'd like to borrow the DVD, read any of the journal articles or borrow anything else from the library, just call or email.

Puberty resources group purchase

Many at the puberty workshop expressed interest in buying some of the excellent resources put out by Secret Girls Business. We are making a group order so that we can receive a discount. If anyone is interested in purchasing Secret Girls' Business, Special Girls' Business, More Secret Girls' Business, Puberty and Special Girls, Special Boys' Business or Secret Boys' Business please call the library on 9841 4410 or email. Prices for the "Special..." books range from $30.00- $40.00 depending on how many we order. Prices for the "Secret..." books range from $11.25-$17.00.
To find out more about these books, go to our previous blogs here, here and the Secret Girls Business Website. Or you can just borrow them from the library (borrowing period is 4 weeks). Just call or email.

Wednesday, 25 August 2010

Tuesday, 24 August 2010

Surf Education Program for People with Disabilities: Maroubra SLSC

We know that lots of kids with Down syndrome love Nippers. Here is an opportunity for more to join:

Maroubra SLSC in conjunction with their Lifesaving partners Maroubra Seals Sports and Community Club is conducting a surf education program for people with disabilities.

The program is designed for children with physical and intellectual disabilities with the aim of having fun while learning about beach and water safety.

The participants will learn all aspects of beach safety from Maroubra Surf Lifesaving Clubs volunteer lifesavers.

Read all about the program here on the Maroubra SLSC website.

Team Australia for Taiwan 2010

Congratulations, and our very best wishes to all the swimmers selected to represent Australia at the 5th Down Syndrome World Swimming Championships in Taiwan, 1st - 8th October 2010.
The team was presented with their uniforms in Queensland at the weekend.
NSW representatives are Lucy Dumitrescu, Daniel Rumsey and Brendan Foley.  We will, of course, be especially cheering for them.
Just over month to go until the Championships begin in Taipei on 1st October - follow their progress and send your good wishes through the Down Syndrome Down Under Swimming Organisation
The World Championships are run under the auspices of the Down Syndrome International Swimming Organisation.

Monday, 23 August 2010

Unbreakable bond: 2 friends share life, look at death with grace

This Boston Herald article about a remarkable friendship should probably come with a tissue warning ....

Alison's 80th

The Tenterfield Star has kindly given us permission to share the photo of Alison Durham, with Jennifer Rich, Recreation and Activities Officer at Roseneath in Glenn Innes, NSW.  It was taken by Ben Lonergan from the Glenn Innes Examiner, on the occasion of Alison's  recent 80th birthday.

Click here to see our previous post about Alison Durham

ABC Disability Portal: somewhere to share the experience of disability

Here's an interesting proposal that has nothing to do with the election:

The ABC is building a website for people whose lives are touched by disability, a place for their issues and stories. It will be provocative, celebratory, challenging and supportive. Everyday will feature news and views from those who meet disability head-on in their lives, their work, their community and family. We expect serious insights and sharp humour - a site with plenty of attitude. We will also be paying close attention to website ‘accessibility’.

Visit the website to see how you can contribute by providing content, or to nominate yourself or someone else to volunteer for the planned advisory committee.

Friday, 20 August 2010

Final election wrap - disability policies

Well, with less than a day to go until the election, time for a final wrap up of the disability policies which have been announced during the campaign.

In a heartening sign, disability issues have featured more prominently in this campaign than perhaps any other – not a lot, but more than usual.

Although the mainstream media have not given them much prominence, both Julia Gillard and Tony Abbott have personally announced disability policies, rather than just leaving them to their disability spokespersons as usually occurred previously. Both leaders have been questioned directly by carers and parents of children with disabilities at various public forums. On the ABC’s Q & A program, Julia Gillard was directly questioned by Jackie Beard, a parent of a young girl with Down syndrome (view here).

In the Senate, the Carers Alliance is running candidates in all states, and is doing a great job highlighting disability issues and pushing for disability policy to become mainstream.

Down Syndrome NSW had been working with other state Associations (collectively under the banner ‘Down Syndrome Australia’) in the lead up to the election to advocate on policy. Down Syndrome Victoria representatives met with Bill Shorten and Departmental staff earlier in the year, and Mr Shorten offered to host a National Down Syndrome ‘round table’ meeting. A national teleconference between state Down Syndrome Associations was held in the lead up to the election, at which we determined a number of priority issues for the federal government to take action on. The priorities we listed included a ‘Helping children with Down syndrome’ package based on the ‘autism’ package, action on ‘wellness’ and positive ageing, breaking barriers to employment, and expansion of accommodation options and support.

Below is a summary of major party policies which address, or partly address some of these priorities which Down Syndrome NSW and other states had identified before the campaign. You can click on the underlined words below to go to external sites providing much more detail on the various measures.
Early Intervention and School Support

Labor: Julia Gillard has announced its policy A Better Start for Children with Disabilities which is an extension of the comprehensive Helping Children with Autism Package introduced by the Labor Government in 2007, to ensure children with Down syndrome, cerebral palsy, fragile x, vision or hearing impairment receive similar assistance to those with autism.

‘A Better Start’ provides $30 million a year over 4 years:
• Each child with Down syndrome under 6 will be eligible for $12,000 worth of early intervention services (physio, occ. therapy, speech therapy, etc).
• Children with Down syndrome under 15 will be able to receive new medicare rebates for diagnostic and allied health services, based on each child’s ‘treatment and management plan’

The policy follows discussions between the Government and a number of disability groups and parents, including Down Syndrome Victoria. Down Syndrome Victoria representatives were invited to the policy launch by Julia Gillard in Melbourne.

Bill Shorten’s office and the Department have confirmed a national ‘Down syndrome round table’ will be held after the election involving Down Syndrome Australia representatives, which will allow for further input in to the detail of the policy.

Another important element of the ‘Helping Children with Autism’ package is funding for teacher training and parent education /support. Details on these elements are not provided yet in the ‘Better Start’ program, and Down Syndrome NSW will push for funds for school teacher training to be included.

Listen to a story on the disability policy launch here and another story featuring an interview with Down Syndrome Victoria CEO, Cath McAlpine on ABC ‘PM’ program here (click ‘play’ to listen)

Coalition: The Coalition has not announced an early intervention policy during the campaign, and has not commented on Labor’s policy at this stage, beyond saying they will “examine it”.

Regardless of the election result, Down Syndrome NSW will continue to push for the Coalition to support a package for children with Down syndrome, based on the ‘Helping Children with Autism’ package, which includes early intervention funding per child, medicare rebates for allied health treatments and funding for teacher training and family support.

The Coalition has announced an ‘Education Card’ policy which will provide a benefit of up to $20,000 for the 6000 most ‘severely’ disabled students.

Although it is likely most children with Down syndrome will not be eligible, there is potential for the program to be rolled out further to provide support for children with mild to moderate disabilities. The program has a number of positive elements, such as the fact that the funding is ‘portable’ and goes with the student if they move schools.

The Coalition has also committed to increase and expand the education tax rebate to include special education costs for children with disabilities.

Labor: has released a supported accommodation policy which provides $60 million to community organisations to provide an extra 150 places in supported accommodation. . The policy encourages flexible, innovative, local solutions to meet accommodation needs.

Labor states “ Community organisations are uniquely placed to develop accommodation and respite options that capitalise on local support and resources, and meet the needs of people with disability and their carers in an inventive way.

Projects could include a modern renovation of an existing home so it can be used for supported accommodation, pooled resources to build a contemporary facility close to local community and health services to provide overnight respite..”

Coalition: A Coalition Government will establish a Disability and Carer Ombudsman who will conduct a “comprehensive audit of Australia’s supported accommodation, identifying the gaps in both capital and recurrent funding.”

The Ombudsman’s findings will be considered by the Coalition Government, but no commitment to additional funding for accommodation has been made at this stage
National Disability Insurance Scheme

Labor: Following an idea proposed at the 2020 summit in 2008, Labor asked the Productivity Commission to conduct an inquiry into a national disability long-term care and support scheme, including consideration of a national disability insurance scheme (NDIS).

The Scheme has been described as being a bit like ‘medicare for disabilities’ providing comprehensive coverage (‘social insurance’) of treatment and care costs for people with disabilities regardless of how they were acquired - whether acquired at birth, from accident or misadventure.

Labor states “We need to consider the whole of a person’s life and adapt to their unique needs, no matter how they acquired their disability. People with disability and their family or carer should have choice, flexibility and control over the services and supports they require. We know this is what people with disability want, and it is in the nation’s long-term interest. 

A national disability insurance scheme would be a complex and transformative reform that requires detailed consideration.

The Productivity Commission inquiry will assess whether a national disability insurance scheme would be appropriate, practical and economically responsible in the Australian context.” 

Coalition: The Coalition has committed to “seriously examine the Productivity Commission recommendations in relation to a National Disability Insurance Scheme”.

“The Coalition acknowledges that better support for Australians with a disability is a high-priority issue and recognises that the disability sector and carers are united in their call for a solution to the unmet need for the long term care and support of Australians with a disability and those who care for them.

The current support system for Australians with a disability is a frayed patchwork that leaves many people without cover and adequate support. The Coalition recognises there is a great need for better assistance for people with disability who need long-term care and that many carers are no longer able to provide constant support.

The Coalition has undertaken to closely examine and consider the recommendations of the Productivity Commission inquiry into the long term care and support of Australians with disability.”
All parties’ full responses to a call for a National Disability Insurance Sceme can be viewed here.

A number of other policies and measures have been announced by the major parties during the campaign: 
Labor has announced a draft 10 year National Disability Strategy which can be viewed here and the Coalition’s suite of measures which make up its Disabilities and Carers policy can be viewed here.

I have focused in this wrap on the major parties in recognition that either the Coalition or Labor will be forming a government after tomorrow’s election. I also draw your attention to the disability policy statement by the Greens (click here) and also, as mentioned above, to information on the Carers Alliance

Regardless of the result tomorrow, Down Syndrome NSW will continue to advocate for the needs and abilities of people with Down syndrome to be acknowledged and supported by Government, and continue to advocate for the priority issues identified by our members. As always, I welcome your views.

Happy voting!

Steve Clarke
Chief Executive Officer
Down Syndrome NSW
Tel 02 9841 4408

Alison Durham celebrates her 80th birthday

Ms Alison Durham turned 80 last week, and that's remarkable.  Happy birthday, Alison, and many congratulations.

This story in the Tenterfield Star tells why, and is accompanied by a fabulous photo.

Alison's birthday marks major milestone

CHRIS WALKER, Tenterfield Star, 18 Aug, 2010

FORMER Tenterfield resident Alison Durham celebrated her 80th birthday on Thursday, and is believed to be the oldest living person with Down syndrome in Australia.

Ms Durham grew up in Tenterfield and has outlived all her siblings. She moved from Tenterfield to Roseneath Nursing Home in Glen Innes early in 1976.

“She has been here for 34 years this year, and is a quiet lady, very gentle and very kind,” said Roseneath’s Recreation and Activities Officer Jennifer Rich.

“She has a set routine every day with each day’s activities.”

Down syndrome is a genetic condition that leads to delays in physical and intellectual development, and occurs in about one in every 800 live births.

When Ms Durham was born in 1930, the average life span for a person suffering Down syndrome was just nine years, putting into perspective the 80-year milestone.

Today, the average life expectancy for those suffering with Down syndrome has improved to the late 50s, but that remains more than 20 years less than the average life expectancy for the typical person.

It is possible Ms Durham is the second oldest surviving person with Down syndrome in the world. The 2009 edition of the Guinness Book of Records lists American Bert Holbrook as the record holder.

If Mr Holbrook is still alive today he will turn 82 this month.

Staff said Ms Durham loves a cup of tea and biscuits, and always hangs up her clothes before bed, ready for the next day.

Along with the nursing home staff, Ms Durham has been kept company by her community visitor Lyn Dwyer for a number of years.

Poignant photograph shortlisted

A poignant photograph of a young man looking on to others' lives was shortlisted for the  recent Moran Contemporary Photographic Prize. 

Click here to see the photograph and read the accompanying article from the Hornsby and Upper North Shore Advocate

Thursday, 19 August 2010

Library Thursdays: Worlds Apart and The Specials

In the library this week are 2 new DVDs. Worlds Apart: Together in adversity (by Tim Robinson, Light on a Hill) is a documentary contrasting the lives of two boys with disabilities. Josh, who is 9 years old, has Down syndrome and other health issues and lives in Toowoomba and Suphot is a 17 year old living a remote area of Thailand who has fairly severe physical disabilities.
The film looks at the boys' day to day lives, therapies they receive, and the support from their friends and families. Josh is homeschooled mostly for health reasons. His immunity was quite low and he was away more than he was at school when he wasn't homeschooled. Suphot attends the local high school and has friends that enjoy him, look out for him and help him. Josh and his mother are very involved in their church and the film looks at how he fits in. There are a few stereotypical comments from friends and supporters, but overall, it is a very good look at the lives of these boys..
It is an interesting film and points out the contrast in the lives for people with disabilities in these two countries. It would have been even more interesting if their disabilities had been similar, but it was still a good look at the issue of disability in Australia and Thailand.

The other DVD in this week is season one of The Specials, the internet series about a housed shared by five friends with intellectual disabilities (some with Down syndrome). The series won a Webby award. The DVD includes the 10 episodes in high quality video as opposed to the compressed version shown on the internet. It also includes housemate profiles as well as the ability to have subtitles. It is quite a
good series and worth watching in a this more convenient format.

Related links:

The Specials website which includes a preview of their upcoming documentary, plus interviews with the housemates and other information of interest.

If you'd like to borrow either of the DVDs or anything else from the library, just call or email.

Federal Election 2010: Coalition policy on people with disabilities and carers

The Coalition yesterday (18th August) released its PLAN FOR REAL ACTION ON DISABILITIES AND CARERS.

"Our plan for real action includes:

1. A commitment to seriously examine the Productivity Commission recommendations in relation to a National Disability Insurance Scheme

2. An investment of $314 million for an Education Card worth up to $20,000 to assist up to 6,000 Australian students with a disability

3. An increase in the Education Tax Rebate and an expansion of eligible expenses to include education costs for children with disabilities

4. The appointment of an independent Commonwealth Disability and Carer Ombudsman to give Australians with a disability and carers a real, independent voice within government

5. A comprehensive audit conducted by the new Disability and Carer Ombudsman of Australia’s supported accommodation

6. $2.2 million to establish a new school for blind and vision impaired students in Victoria and an assessment of the need for additional special schools across Australia that cater for students with particular disabilities

7. $1 million to provide digital playback devices and improved access to digital content in public libraries

8. $500,000 to fast-track technology to make cinemas more accessible

9. $1 million to promote voluntary guidelines for accessible housing for older Australians and Australians with a disability

10. A Disability Enterprises (ADE) Advocate

11. $3 million for a new Young Carer Scholarship Programme

12. Maintenance of income support for carers

Click here for  Senator Mitch Fifield's media release

Click here to download the policy document (2 Mb .pdf)

Wednesday, 18 August 2010

Buddies build a bridge to disabilities in school

Harmanjot Kaur is not sure what her best friend Bree Grisedale's intellectual disability is because ''frankly, it doesn't matter,'' she said.

They are among 150 sets of ''buddies'' who make up Best Buddies Australia, a not-for-profit organisation that pairs an intellectually disabled person with an able buddy to spend time together, whether playing video games or shopping.

Mark Trevaskis believes there are no organisations like his. He asked the NSW Department of Ageing, Disability and Home Care for $1 million this year to expand around the state but received $150,000, barely enough to continue operating .....

Read Rachel Olding's report from today's Sydney Morning Herald here.

Woman's Day - Carers Special

The current issue of Woman's Day magazine (23rd August 2010) includes a Carers Special section, edited by Alan Jones.  It features input from several family carers, some of whom are celebrities.  Carer concerns are covered, as well as personal stories.  Down Syndrome NSW Patron, Craig Wing talks about his sister Kirsty, who has Down syndrome:
He's an international rugby sensation, but Craig Wing believes his 20-year-old sister, Kirsty, who was born with Down Syndrome, is the true star of his family.

"She loves being the centre of attention," the former Australian rugby league representative says. "She's definitely not delicate. She's happy, bubbly and you can never get the better of her."

Craig says caring for Kirsty over the years has been a whole family effort. "Mum is definitely her main carer, although we all help out," he says. "Being a carer means a lot more than being a parent. It's a full-time thing. Mum and Kirsty are incredibly close.

"Although Kirsty needs care, we try to treat her as normally as possible, which I think has made her more independent."

In 2007, Craig turned down a $400,000-a-season contract with the Gold Coast Titans because he didn't want to leave his family, particularly Kirsty, in Sydney. Now Kirsty has finished high school, and is applying for part-time jobs, Craig finally feels comfortable enough to take a lucrative contract to play in Japan.

"My four sisters have all just come over for a holiday," he says. "It was good to give Mum a break and we had a great time.

"You always worry about your family and your sisters. I guess with Kirsty I just worry a little bit more."

Tuesday, 17 August 2010

Federal Election 2010: People With Disability statements

Peak organisation People with Disability (Australia) has collected its media releases, voting information and issues statements related to the Federal Election here:

People With Disability on the 2010 Federal Election

Centrelink: changes to Carer Allownce/Carer Payment applications and eligibility

:Recent changes to application for Carer Allowance (child under 16 years) should not affect parents of children with Down syndrome since Down syndrome is on the list of eligible conditions.  However, changes to the application process for Carer Allowance for those caring for a person with Down syndrome 16 yrs and over, and changes to Carer Payment eligibility and application will be relevant to some families.

The  FAHCSIA Fact Sheet, Improved Support for Carers, listing the changes from 1 July 2010 is available here.

FAHCSIA has provided this summary and contacts:


Changes to the assessment for qualification to Carer Allowance (child) commenced on 1 July 2010 and include:

•   Single assessment tool – qualification for Carer Allowance (child) is now assessed and scored using the same process and scoring as used for Carer Payment (child). This makes it easier for carers. All carers qualified for Carer Allowance (child) on 30 June 2010 remain qualified for payment.

•   Easier transition to Carer Allowance (adult) – It is now easier for carers to move between Carer Allowance (child) and Carer Allowance (adult) when their child turns 16. The carer may remain qualified for Carer Allowance (child) for up to three months after the child turns 16 years. This transition period is already available for Carer Payment.

Do you require further information?

Further information is available from the payment page on Centrelink’s website , telephone Centrelink on 13 27 17 or for TTY service 1800 810 586, the Indigenous Call Centre on 13 6380 and assistance in languages other than English on 13 1202, or visit your nearest Centrelink office.

Monday, 16 August 2010

Parent & Carers Forum - Puberty, Sexuality & Relationships

FREE FORUM,  presented by Family Planning NSW

For parents and carers of children and young people with intellectual disability

1 - 5 pm Saturday 11th September 2010


Further details, registration (including an online registration option) are available here.

Special Guest Presenter

Dr Tania May, Senior Medical Officer, NSW Health and Family Planning NSW, will talk about child to adolescence development.

CHOOSE from 3 practical workshops

Workshop 1: Relationships and Dating

Liz Dore, Relationships Counsellor and Educator, Relationships and Private Stuff.

This workshop will explore ways to support young people with disability in conversation skills, meeting people and making friends, safer dating and relationship development.

Workshop 2: Girls Business

Dr Tania May, Senior Medical Officer, NSW Health and Family Planning NSW.

This workshop will explore some of the sexuality issues for girls and young women with intellectual disability including menstruation management, contraception and more.

Workshop 3: Using Educational Resources

Catherine Henniker, Senior Health Education Officer, Family Planning NSW.

A practical workshop showcasing books, DVDs and other resources parents and carers can use to support their family member in the area of sexuality and relationships.

Federal Election 2010: parties endorse National Disability Insurance Scheme

Received from the National Disability Insurance Campaign team:

As you are aware, the end of the federal election campaign is looming fast. This election represents an unprecedented opportunity to push all of the major parties to give greater consideration to the provision of support for people with a disability, their families and carers. We are not looking however for piecemeal pre-election handouts – we are looking for fundamental transformational reform on the scale of a National Disability Insurance Scheme.

The National Disability and Carer Alliance therefore presented the following statement to all three major parties – Coalition, Greens and ALP – and asked them for their formal endorsement. Click here to read a document that summarises their responses. We have also included material from the Carers Alliance who have declared their support for the introduction of an NDIS.

The current disability support system is unsustainable and indefensible. It is chronically under-funded, inefficient, inequitable and, most seriously, fails to meet the needs of Australians with a disability, their families and carers. Unless there is fundamental change, the gap between the need for disability services and their availability will grow.

We therefore call on all parties to commit to major reform of the disability services system immediately following the final report from the Productivity Commission’s Inquiry into a Disability Care and Support Scheme, due in July 2011.

The reforms, most importantly the introduction of a National Disability Insurance Scheme, should create a system that is equitable, efficient, sustainable and based on self determination. The person with a disability, their family or carer should be placed at the centre – exercising choice, control and receiving the services and supports they require for as long as they require them.

We are asking you to distribute the material in the attached press release to all your staff, members and clients for their consideration in the forthcoming election. We are not trying to tell people how to vote – we are simply presenting a summary of each party’s position to inform individuals as they consider how to cast their vote on August 21. We strongly encourage you to top and tail the material with your own particular message.

By conservative estimates there are more than 1.4 million people with a disability which has a significant impact on their daily life in this country, and a further 600,000 people providing unpaid full time care. These figures do not include people with a more moderate disability, extended family members, interested friends and committed staff members. Numerically as a group we are strong. Much smaller groups of people have far greater sway with politicians and the public. We now need to put a strong message to the politicians and the public that things must change and change soon. We must demonstrate that we are united in our support for a National Disability Insurance Scheme.

If you have any questions about the material please contact Kirsten Deane at the National Disability and Carer Alliance 

Thursday, 12 August 2010

Library Thursdays: Moira Pieterse

Moira Pieterse has contributed much to the Down syndrome community in Sydney as well as NSW and the world. She established and ran the Down Syndrome Program at Macquarie University beginning in 1975. She co-wrote the well known program for early intervention--Small Steps: an early intervention program for children with developmental delays, (Moira Pieterse and Robin Treloar with Sue Cairns, Diana Uther and Erica Brar) which included communication, gross motor, fine motor, social skills and developmental checklists and is still relevant today. She helped develop The Macquarie Reading Program and researched literacy in children with Down syndrome. She spent time in Russia, the Netherlands, England, Slovenia and other countries helping parents with children with Down syndrome. She was involved in the beginning of integration in mainstream classrooms.
In addition to all of that, Moira dedicatedly promoted amongst health professionals and others in the community the rights and potential of people with Down syndrome.

Last week Moira presented the DS NSW library with many interesting pieces of her work. They include translations of Small Steps in Dutch, German, Turkish and Slovenian, photos from the Macquarie Down Syndrome Program, many of her research papers and others' works from the same period.

We are very grateful to Moira for all she has done for so many as well as providing access through our library to her works. If you are interested in any of them, come and have a look. A complete list of what's available with be posted when they are catalogued.

To borrow anything from the library, just call 9841 4410 or email.

Wednesday, 11 August 2010

Grafton/Coffs Harbour families

Olivia's family has asked us to pass on this request via the blog:

We would like to make contact with other families of young children with Down syndrome (5 – 11yrs) in the Grafton/Coffs Harbour region. We’re looking to move there ourselves within the next 6 months or so and would really love to talk to some other parents regarding schooling options, issues, services (speech etc) in those areas.

Sonia and Jason Brown (parents to Olivia, 5yrs)
Mob: 0432 510 106

Tuesday, 10 August 2010

Options for special needs kids

Debate is intensifying over whether children with special needs or disabilities should be educated away from mainstream classrooms, writes Steve Dow.  Read the full text of this article from yesterday's Sydney Morning Herald here.

The article prompted this response today, in a letter to the editor:

I am flummoxed that the argument about inclusive education is back at square one (''Options for special needs kids'', August 9). For parents who have children with special needs in mainstream classrooms, and for teachers experienced at having such a diverse classroom, the issue is so much further along.

The real issue is not whether special needs children can be educated in a mainstream setting, but that the funding structures and bureaucratic systems in education have failed to keep up with the change. The NSW Department of Education's funding for classroom aides is woefully inadequate and bordering on negligent. It has been for years.

All the longitudinal studies show that the positive outcomes for special needs and ''normal'' children in inclusive education settings far outstrip the negative. If we are to talk about ''options'' for special needs children, let's start by not limiting them.

Kim Berry

Monday, 9 August 2010

Federal Election 2010: Greens and Carer's Alliance

The Greens’ policy on disability is listed on their website.

In NSW and other states, the Carers Alliance has endorsed candidates for the Senate and some lower house seats with a specific focus on carer and disability issues. The Carers Alliance is a registered political Party

The blog Purple and Orange includes quite detailed analysis of the current election campaign policies and issues as they relate to people with disabilities, written by Robbi Williams.

DS NSW Update: August 2010 issue

The August 2010 issue of the Down Syndrome NSW e-Update is now available here.

The Down Syndrome NSW Update is a monthly listing of events (both DS NSW and other organisations) of interest to people with Down syndrome and their families, and information needing to be disseminated at short notice.

Subscribe for email delivery in the subscription box at the top of the column on the right of this screen.

To submit content, please contact the editor at  or call 0409 911 913 by the 8th of the month for inclusion in the following month's issue.

Saturday, 7 August 2010

Communication and Supporting Skills Workshops for Parents of Children and Adults with Disabilities

Eight Mondays:

September 6th, 13th, 20th, 27th 
October 11th, 18th 25th, 2010

10.30am to 12.30pm, with refreshments from 10.00am

This programme aims to empower parents and to encourage them to be as effective as possible for the demanding rolethey have. The programme acknowledges the considerable expertise of parents and seeks to promote: 
  • Self-care in order to prevent burnout
  • Stress management as a means of reducing stress
  • Mutual support for accessing support for self and others
  • Listening skills as a means of enhancing relationships (both within the family and with service providers)
  • Assertion skills as a way of claiming rights and having needs met
  • Information to ensure awareness and confidence. 
The programme will describe the reactions and feelings that parents of disabled children and adults report they experienced when they were first told that their child had a disability. Opportunities will be provided for participants to share their experiences.
The aim is to provide parents with the skills to more ably manage the issues that family members of children and adults with disability encounter.
Content of Workshops:
  • Setting the scene:   introductions, overview & purpose of the workshops; sharing family details; dealing with stress and caring for oneself. 
  • Reactions and feelings of parents to the diagnosis of disability; sharing of experiences; approaches to mutual support. 
  • What is support? Developing the skills to support others.
  • Further skills to support self and others.
  • Still more skills to support self and others.
  • Developing the skills of assertion as a means of advocating for oneself, one’s family and others.
  • Further assertion/advocacy skills. Revision and integration of the skills of the workshops. 
Facilitators:    Ray Murray and Nola Manickam
Ray has facilitated this type of workshop on a regular basis in Auckland, New Zealand and Dublin, Ireland as well as training parents and professionals to work as partners in delivering similar workshops in Queensland for the Parent to Parent Association.
Nola is a parent and has worked in the field as an Radiographer. Nola supports the work of the Centre for Disability Studies as a member of the Board.
Fee:  $50.00 (for whole programme)
Venue:  St. Albans Anglican Church, Lower Hall, 3 Pembroke Street, Epping (2 minutes walk from the station)
Booking:  contact Margaret
Phone:   8878 0500