Address details

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

Saturday, 31 July 2010

Federal election campaign 2: Liberal Party policy and funding announcement on services to support people with disabilities

The Liberal Party announced a policy and funding package for students with disabilities yesterday (Friday 30th July) as part of its election campaign. 

The Coalition will invest $314 million to provide greater support to students with a disability and their families.

It is time to take real action to help to get the best possible educational outcomes for Australian students with a disability.

Click here to read the full announcement on the Liberal Party's website.

The Liberal Party has said that additional policies related to people with disabilities will be forthcoming.

Friday, 30 July 2010

Thursday, 29 July 2010

Federal election campaign: Labor Party policy and funding announcement on services to support people with disabilities

The Prime Minister announced a package of policies and funding to support people with disabilities this morning, as part of the Labor Party's election campaign.  Below you will find brief extracts from Parliamentary Secretary Bill Shorten's e-News bulletin, released earlier today. Click on the links to read the documents in full.

Children with disability given a better start in life

The Gillard Labor Government will provide new access to early intervention services to help give more children with disability a better start in life.

Under Federal Labor’s new program, more children with disability will be entitled to the same benefits as under the Helping Children with Autism Package. This package represents a total investment of $122 million over four years.
 More supported accommodation for people with disability

A re-elected Gillard Labor Government will establish a new capital fund to build innovative, community-based supported accommodation places for people with disability.

A total of $60 million will be provided over the next four years for this initiative, on top of the more than $6 billion provided to the States and Territories over five years from 2007 through the National Disability Agreement.
National Disability Strategy

The Gillard Labor Government has released its draft National Disability Strategy which outlines a 10-year national plan to improve the lives of people with disability, promote participation, and create a more inclusive society.

A re-elected Gillard Labor Government will take the National Disability Strategy to the Council of Australian Governments early next term.

Library Thursdays: Sex and relationships booklets, Plus resources for children on Coeliac Disease

CHANGE is an organisation led by people with disabilities in the UK who seek equal rights for people with intellectual disabilities (called learning disabilities in the UK). They have produced a series of books for people with intellectual disabilities on sex and relationships. Titles include: Friendships and relationships, Sex and masturbation, Safe sex and contraception, Lesbian, gay, bisexual and trans and Sexual abuse. The books are written by people with intellectual disabilities using easy language and pictures to support discussion of these topics.
These books are all available in the library to borrow.

Also new in this week following on from last week's blog are:
Cassie Croc has coeliac disease by Anthea Allen (who wrote this when she was 11, a year after she was diagnosed with coeliac disease), tells the story of Cassie Croc's diagnosis and treatment of coeliac disease.
Amy can't eat gluten by Judy Young is another book for children to help them and others understand coeliac disease. It is in black and white and includes puzzles and recipes.

If you'd like to borrow any of the above resources or anything else, please email or call.

Tuesday, 27 July 2010

More alike than different: campaign video

The National Down Syndrome Congress (based in Atlanta, Georgia) is running an awareness campaign focusing on how people with Down syndrome are more like everyone else than different.  This video is a powerful 4.51 mins:

Here is a ten minute documentary from the same campaign:


Monday, 26 July 2010

Gateway: A visual arts experience from the artists at Boonah Creative Arts

Glebe : 30 July - 17 August 2010:
An exhibition of works from the visual arts students at Boonah Creative Arts Centre.

Gateway celebrates the creative diversity of artists with a disability.

Gallery hours Monday to Friday 10:00 am to 5:00 pm. Exhibition continues until 17 August 2010.

Gallery Red, Shop 11, 131 Glebe Point Road, Glebe 2037.

Open to the general public, gold coin donation

Access: Wheelchair access limited. Gallery access has a very small step up through a standard size doorway. Large, motorised wheelchairs may have difficulty.

More info: Boonah Creative Arts Centre tel 02 9499 5675 or email

Source:  Accessable Arts NSW

Sunday, 25 July 2010

New bowling group for secondary students: Eastern Suburbs

Are you looking for regular, social and leisure opportunities for you teen, in the Eastern Suburbs of Sydney?  Natascha Milsom's note could be for you - please contact her directly:

I am in the preliminary stages of setting up a Bowling group in the Eastern Suburbs catering for children with Down syndrome attending Secondary School. This will be a monthly event. We intend to hold a gathering on the last Sunday of every month.

The intention is for the individuals to form friendships with other children with Down syndrome attending secondary school while having fun bowling. We would like a nice mix of girls and boys if possible.

At least one parent will be expected to attend which will give parents the opportunity to support the group in the early stages and eventually parents will be able to relax, have a drink and share information with other parents. Siblings are also welcome to bowl. As they grow up they will play an important role in the lives of their sibling with Down Syndrome.

Once I have a list of interested parties I will be in contact with regards to possible locations and cost to get a consensus of what works best for everyone.

Please send your contact details

1. Your name & email address
2. Name of your child

3. Child's age

4. Name of school they attend

5. Postal address

Looking forward to hearing from you,

Natascha Milsom,

Housing Pathways: single application process for public housing

IDEAS has written about this welcome innovation:

A new program called 'Housing Pathways' was recently introduced to make it simpler, fairer and easier for people to apply for and be matched with housing assistance. In the past you had to register an application with Housing NSW and with community housing providers, with each service/organisation having their own waiting lists, you needed to contact each service/organisation separately to find out where your application was up to.

Now Housing NSW, 28 community housing providers across the state and the Aboriginal Housing office has set up one application system under Housing Pathways. Now you can fill out one application form for all the participating services/organisations and choose who you would like to provide housing assistance to you.

.....  Click here to read more on the IDEAS blog

Saturday, 24 July 2010

Disability and culture

Sydney writer Fiona Place has started a new blog, Disability and Culture, to the discuss the issues facing parents raising a child with an intellectual disability, and how culture shapes and is shaped by our experience of disability.

Some of her writing is deeply personal, some is more focused on ideas - it is well worth a bookmark, or a spot on the "favourites" list.  There is now a link from our blogroll, in the right hand column.

Friday, 23 July 2010

Disabled students need to be part of mainstream

Letters to the editor, Sydney Morning Herald today (23rd July) in response to Ross Jeffreys's letter yesterday:

As a teacher and a parent of a child with Down syndrome I have a vested interest in the issue of inclusion. I wholeheartedly agree that we need to manage resources more efficiently, and funding needs to be reconsidered. My daughter receives what I would call inadequate funding and I am thankful that she is at a school that is creative in how it supports her.

I was disturbed by the letter from Ross Jeffery (July 22). As an ''educator'' and an executive within the system, his opinions sound very similar to other ignorant views I have heard.

I should not have to justify my daughter's right to an education. She is not a second-class student. Research indicates that it is in her best interests to be in a mainstream class and at the moment I can see that she loves it there, is well adjusted and well liked by staff and peers and, most importantly, is learning not just social skills within her community but academic ones.

I also have a ''regular'' son at school. I do not need to go out of my way to argue for a fair go for him on a regular basis. No school gave me funny glances when I went to enrol him.

To suggest that mainstream students suffer because of the inclusion of disabled students is an ill-informed generalisation. Children with special needs are as diverse as the rest of the population and should not be vilified by educators.

The offensive singling out of students with learning difficulties, autism or Aspergers on the My School website is a ludicrous suggestion.

The inference seemed to me to be that these particular special needs children tended to be more trouble, a ridiculous statement. Perhaps we should identify what the religious beliefs or racial mix are of each school population while we are at it? Total guff.

As an assistant principal, Mr Jeffery would be better placed developing a passion for teaching - in loving to see the ''light bulb'' go on - for all the children in his school not just the ''privileged'' majority.
Shelley Phillips Five Dock

Disability Rocks Concert

Seymour Centre - Chippendale, Sydney

Sunday 1st August, 3pm

Dedicated parents of children with a disability have joined forces to change the scene for people with a disability throughout Australia. To spread the word whilst ensuring that you're well entertained, they have organised a high energy jazz concert with James Valentine (from ABC Radio 702) as MC.

It’s a Sunday afternoon of entertainment with political speakers highlighting some key proposals needed to enhance access to disability services in the future.

Music and dance are to be provided by Jim Conway and his Big Wheel Band, the James Valentine Quartet and Studio Artes.

The concert has been designed to appeal to a broad audience to spread the message about the value of a National Disability Insurance Scheme to the wider community.

Speakers will include Federal Parliamentary Secretary for Disabilities Bill Shorten, MP, his Opposition counterpart Senator Mitch Fifield, NSW Greens MLC Ian Cohen and MaryLou Carter from the Carers Alliance.

The Labor Government put a proposal for a National Disability Insurance Scheme before the Productivity Commission in late 2009. The Scheme would ensure funding for services and support needed by people with moderate to severe disabilities, using a combination of existing resources plus a medicare-style levy on Australian taxpayers of a proposed 0.8%. It would provide a safety net for Australians, covering people born with disability as well as those who become disabled due to accident, injury or illness.

The Productivity Commission will report on the Proposal by mid-2011. The Greens have agreed to support the Proposal. The Liberals are silent.

Attendance at the Concert will put pressure on Labor to follow through, and on the Liberal Party to break their silence.

Tickets: $28, with concessions available. To purchase, call the Seymour Centre on 02 9351 7940 or visit

What's next? 2 workshops for parents of pre-teens and young adolescents

Saturday 21st August

at Down Syndrome NSW, 80 Weston Street Harris Park (Sydney)

Register for either or both workshops, and for lunch if you choose.

Workshop 1:    10 00 am - 12.30 pm

Puberty - the onset and early years, information and resources for families.
LUNCH:  12.30 - 1.30 pm

Workshop 2:   1.30 - 4.00 pm

Preparing for High School - a workshop for parents of students transitioning to Year 7 in 2011 or 2012

Cost:  $22 per worksop.  Lunch:  $11 (adult siblings are welcome - no charge)

All enquiries, Siena, DS NSW 9841 4411 or

Something a little lighter ....

Here are some links to lighten the mood a little after those media reports, and the education inquiry ....

Thursday, 22 July 2010

Library Thursdays: Coeliac Disease Resources

According to Dasha Weir, who gave the Allan Crocker lecture on Celiac Disease and Down syndrome, 5% of people with Down syndrome have Celiac Disease. Some studies put this figure as high as 16%. Whatever the true figure is, it is higher than the incidence in the general population (about 1%) so it is useful to be aware of the symptoms and treatments. The following online articles, talks and websites are very useful resources. Also in our library, we have Kids with Celiac Disease: A family guide to raising happy healthy gluten-free children by Danna Korn (Woodbine,2001) and Incredible Edible Gluten-Free Food for Kids by Sheri L. Sanderson(Woodbine House, 2002).

To borrow any of the books mentioned or anything else, just call or email us.

Education inquiry - report released

The NSW Parliamentary inquiry into the provision of education to students with disabilities and special needs released its report yesterday, available online here.

Here is what the Sydney Morning Herald reported (21st July)

and two responses published in letters to the editor today (22nd July)

Teaching students with disabilities

   Teachers need more training to help students with disabilities (''Teachers overwhelmed by special needs'', July 21)? No amount of training compensates for the demands of disabled students in a mainstream class. As an assistant principal, I know how a disabled child with no full-time aide delays and disrupts lessons. When will the parents of mainstream students start demanding a fair go? The number of students with learning difficulties, autism or Asperger's should be shown on the My School website.
Ross Jeffery Wahroonga

   It could be inferred from your story that the parliamentary inquiry report found the inclusion of special needs students in mainstream classes "was to the detriment of other pupils". The report does not say this at all, but supported inclusive practice. It is time to bury this idea and address the real issues, which revolve around resources and the training of teachers.
   No amount of funding will be sufficient if there is no commitment to ensuring teaching staff are appropriately trained to meet the needs of all students. Those teachers employed in specialist roles need more intensive training and experience.
Annette Guterres Concord

Wednesday, 21 July 2010

MacSween's special needs remarks weren't very prudent

She made her name in PR - but Prue MacSween started a row by suggesting high needs pupils should be separated from mainstream classmates.

Families with disabled or special needs children, furious about her remarks on Seven's Weekend Sunrise show, have demanded apologies from Ms MacSween and Seven.

Read the Daily Telegraph's report here.

Families sue over lack of pre-natal diagnosis

Two Victorian couples are suing doctors for failing to diagnose Down syndrome in their unborn babies, denying them the chance to terminate the pregnancies.

The couples are claiming unspecified damages for economic loss, continuing costs of care of the children, and "psychiatric injury".

Both say they would have aborted their pregnancies had they been told their children would be born with Down syndrome.

Read the Melbourne Herald-Sun report here.

The cases received extensive coverage on radio and in the press throughout the day.

22/7/2010 edit:  a response from the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, and other families

Tuesday, 20 July 2010

Fundraising concert for Daniel: Taiwan 2010

The International Down Syndrome Swimming Championships provide an opportunity for elite swimmers with Down syndrome to compete internationally.  Daniel Rumsey, 21,  from the Southern Highlands has been swimming competitively since he was a child, and has represented Australia  in this competition several times.  He has again been selected for Team Australia to compete at the fifth international meet to be held in Taiwan in October this year.
Danny's friend Steph Wigens says he "holds the highest number of world records in the world".  She is helping to promote a concert to assist Danny to fund his trip to Taiwan.  The musician are Andrew Rumsey (Danny's brother, pictures with him above left) and friends, playing as Encore.

present a variety of musical delights for piano, cello, flute voice and guitar

7.30 pm, Saturday 31st July 2010
Bundanoon Soldiers Memorial Hall

Tickets $25 from
Todd Real Estate, Bundanoon
The Brown Bookshop, Bowral
The Highland Bookshop, Moss Vale
The Bell Gallery, Berrima
Arts Bundanoon

Friday, 16 July 2010

Atypical Behavior in Individuals With Down Syndrome - free online seminar

Upcoming webinar on July 23rd at 5PM BST (check the relevant time in your region) by Dr. Mary Pipan of the Children’s Hospital of Philadelphia For access information and to reserve your webinar seat, register here:

Slides from the presentation will be posted to  (National Down Syndrome Society, New York)

During the webinar there will be time for Q and A and open discussion on any topic. Please feel free to submit questions to NDSS in advance of the webinar. To submit a question, or suggest a topic for a future webinar, please email:

Relationships and Private Stuff workshops - September

Liz Dore presents the following workshops to support people who have an intellectual disability or ASD to develop good personal relationships.

Friendship and Dating Skills (for ages 18 years plus)

Saturday 18th & Saturday 25th September 2010, 3pm – 6pm

Woodstock Community Centre, 93 Fitzroy St, Burwood, NSW.

These workshops are held over two sessions. This gives the participants an opportunity to meet and socialise with others while learning through structured education activities. Topics include: conversation and turn taking; making friends; steps in forming relationships; touching, timing and consent; and protecting your self from unwanted touch. Informal activities such as going to a local pub or coffee shop are used to reinforce learning.

Friendships and Puberty Stuff (for ages 10 - 15 years)

Tuesday 28th September 2010, 10am – 2pm

Woodstock Community Centre, 93 Fitzroy St, Burwood.

This workshop uses group work, videos and other fun activities to help young people to develop important social skills. Topics include: feeling good about myself; effective communication, how to take turns to develop better friendships; what is a ‘real friend’? Puberty; how to look after myself; sex, babies and birth; and how to be boss of my body. The workshop uses informal activities including a picnic lunch in the park to reinforce learning.

Relationships and Sexuality (for ages 16 - 26 years)

Thursday 14th October 2010, 10am – 3pm

Woodstock Community Centre, 93 Fitzroy St, Burwood.

This workshop covers fundamental skills and knowledge that are necessary for good relationships. Topics include: communication and friendship; relationship development; taking care of myself; social and legal rules for touching and sex; and safe sex.

Regional NSW workshop

Relationships, Private Stuff and Disability
For parents and others supporting people with disability

Tuesday 24th August, 10am – 2pm

RSL Club, Dobbs St, Wagga Wagga.

This workshop gives parents strategies for supporting teenagers and young adults in relationships and sexuality. 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; and Protective behaviours.

For more information contact Liz Dore (Counsellor and Educator) on 0416 122 634 or  

Thursday, 15 July 2010

Library Thursdays: Homeschooling resources

One option for educating your child is homeschooling. Some parents who would like to homeschool their children worry when they have a child with Down syndrome that they will not be able to or others suggest that it will be too hard. Many find that it is a good choice for their family and that there are benefits for their child with Down syndrome. There are many resources available online to help.

Amy Dunaway has written a guide to Homeschooling Children with Down syndrome (available online) which gives her homeschooling story and views and lots of resources that she has found helpful many of which are available in the DSNSW library.
Her blog also offers many suggestions.

Blogs by homeschoolers with a child with Down syndrome:



There are many books on teaching reading and maths to children with Down syndrome as well as other educational areas available in the DSNSW library. If you'd like to borrow anything, just email us or call.

Wednesday, 14 July 2010

Help Dancability win a grant

A plea from Lucy Ricardo:

Hope you can all help danceability out. We have applied for a  grant and now it is up to the public to vote. You log into the following site . Go to film section click on open entrant and look for film titled "It's all about ability". Make sure you click on the correct film. Please spread the word. The more votes the better chance we have of getting this grant.

A slight hitch with the technology .....

Down Syndrome NSW is currently experiencing some difficulty with the servers hosting our website,   Although we have updated the site regularly over the last three weeks, you might be unable to access the new material and links.  We apologise for the inconvenience this might have caused you, and urge you to call us (02 9841 4444 or email ) and we will attend to you enquiry.

You should see this on the home page when you log in to our site - if you can't see the little girl with the flowers, you won't see the latest links and information either:

If you are looking for information about Down syndrome, rather than information about our events or latest publications, you will still be able to access what you need.

Our service provider is working on the problem now - we hope to be up-to-date by the end of the day.

Tuesday, 13 July 2010

Down syndrome, off the clock - a word from Dave Hingsburger

'I only have Down syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down syndrome the rest of the time when I'm doing what I know how to do.'

Dave Hingsburger has done it again - yesterday's post to his blog, Rolling Around in My Head captures a moment of  humour and wisdom in what reads like a little neighbourhood anecdote, except that he presents the essence of an important understanding that could so easily be dismissed.  If you are a parent of a son or daughter with Down syndrome or any intellectual disability, this story will strike home.

Movement and performance for people with disabilities: Hawkesbury.

Hawkesbury Regional Gallery: Performance in the Gallery

20 Jul - 21 Sep 10
A series of 10 exciting workshops in movement and performance for people with mild to moderate intellectual and physical disabilities.

Over the 10 weeks, we cover a range of skills including decision-making, range of movement, coordination, voice and sound making, gesture and action, movement and stillness, shape making and performance making with both movement and text.

Enrolments essential as spaces are limited.

Further information: Accessible Arts NSW

Monday, 12 July 2010

Beyond Technique: Inclusive Dance Master Class

You might see some familiar faces in this very nice video of the Beyond Technique Master Class.

In March 2010 Accessible Arts hosted a series of inclusive dance master classes at Carriageworks, Sydney, with Philip Channells, artistic director of Adelaide's multi award winning Restless Dance Theatre. Thirty-five people- dancers, performers and educators with and without disability - contributed to the broad range of experience in the class, culminating in an evening performance of the devised works:

You can also see it on You Tube here, and you can then follow up with Aarts other You Tube videos.

Spark : Creative Arts Festival

8 - 10 Sept 10 : Two day festival of creative arts for people with disability

Presented by The Junction Works Ltd, this festival takes place at The Tops Conference Centre, Stanwell Tops and offers a variety of workshops in music, performance, puppetry and theatre.

Workshops include:
  • Morganics - Elemental Hip Hop
  • Ora Barlow - Might & Magic of Maori Dance
  • Krinki Puppetry Co - Snap, Crackle & Pop Puppetry Workshop
  • Legs on the Wall - Letting Loose
  • Dave Kelly & Paul McEvoy - Percussion Fusion
  • Adrienne Coulter - Vocal Vortex: Making a CD 
  • Nic Wright - Skin Kin
Registrations close 13 August 2010.

The Tops Conference Centre, Bendena Garden Rd, Stanwell Tops, NSW

For people with disability

Cost: $260 per person, includes meals, accommodation and festival costs

Access: Accessible Venue

Contact: For registration form and more information contact  or tel: 02 9606 9628

Proudly supported by Ageing, Disability & Homecare, Department of Human Services


Saturday, 10 July 2010

When I'm old [or if I have a disability] I'll still want soft poached eggs .....

Stephen Judd, the CEO of HammondCare, a leading provider of aged and dementia care wrote a thought provoking column for the Sydney Morning Herald today (Saturday 12th July 2010), about whose needs are being met by the way the daily round is often organised in aged care.

We currently hear a lot about the importance of "person-centred planning" and "individualised services" in planning to meet the needs of people with intellectual (and other) disabilities, so how close to the bone would it sound if we were to substitute "people with intellectual disabilities" for "older citizens" and "supported accommodation" for "aged care" in Stephen Judd's column? Or does enlightened, modern thinking have something to offer to aged care?

Stephen Judd starts,

Everyone has different rhythms, preferences and choices. I like having breakfast at a table reading the newspaper, while other strange people like breakfast in bed, with all the crumbs and bacon in the sheets.

But if an older Australian moves into residential care, he has to be up and dressed at 8am. Rather than being allowed to sleep in, older citizens are obliged to conform to a regimented schedule revolving around what suits staff or operational efficiencies, rather than continuing to enjoy the daily rhythms most people have enjoyed for many years.

Many relatives are pleased to hear a home provides activities to enjoy, and the accreditation agency likes it too. But do older citizens enjoy them? My aunt was a sociable woman, but in an aged care facility she had a violent reaction to being almost compelled to participate in group activities. "It makes me feel like a child at a compulsory school camp."

She is not alone. In Melbourne a study of 25 carers and 25 residents from five hostels found that although participation was valued and encouraged by carers, residents were left feeling isolated, compromised and as though they were not at home.

Read the whole piece here, and just try substituting "people with intellectual disabilities" for "older citizens" .....

The Big Event: In Control Australia, at Penrith

The Big Event:  supporting people to get a life ..... not just a service

AUGUST 27TH 2010

9AM TO 4.30PM

Hosted by Sunnfield Independence

..... the Big Event encourages people from all walks of like to attend. Family members and carers, key influencers from local communities, government agencies and service providers as well as professionals .....

A wide range of speakers is listed, including several family members from across NSW.
Click here for a detailed flyer and registration form

Friday, 9 July 2010

Direct funding success story

New helping hand for those with disabilities

Sydney Morning Herald, July 5, 2010

When Clare Hooper left high school, she attended a special community centre to learn life skills and go on group excursions. As a person with intellectual disabilities and schizophrenia, she was given little choice. The government-funded centre offered her two days of activities with 30 others. And as her mother, Helen, remembers, Ms Hooper was ''bored and unfulfilled''.

Now the 23-year-old lives in her own flat and pursues her passions - painting and drawing - helped by an inspiring teacher, Robyn Chadwick. She has twice won North Sydney Council's annual art prize for people with disabilities.

Ms Hooper is happier and more confident, her mother says, thanks to a new way of funding the needs of people with disabilities - funding families instead of organisations.

''The government gives us $20,000 a year and we have spent it on weekly art lessons, a personal trainer, WeightWatchers, and a support worker when Clare gets casual jobs, '' says Mrs Hooper.

Her daughter, who once rarely left the parental home, now ''walks around the community with her head high''.

A new study, funded by the federal government, reveals as unfounded the qualms many hold about individual funding. ''People don't waste it on gambling,'' says the lead researcher, Karen Fisher, an associate professor in the Social Policy Research Centre, at the University of NSW. ''Families are highly responsible and use the money most judiciously.''

Click here for the online article and to see Brendan Esposito's photographs published with it.

The study commissioned by the Australian Government's Department of Families, Housing, Community Services and Indigenous Affairs  is:

Occasional Paper no. 29
Effectiveness of individual funding approaches for disability support
by Karen Fisher, Ryan Gleeson, Robyn Edwards, Christiane Purcal, Tomasz Sitek, Brooker Dinning, Carmel Laragy, Lel D'Aegher and Denise Thompson, Social Policy Research Centre and Disability Studies and Research Centre, University of New South Wales (2010)

This report was funded by the Department of Families, Housing, Community Services and Indigenous Affairs under the Social Policy Research Services agreements, and undertaken by the Social Policy Research Centre and the Disability Studies and Research Centre at the University of New South Wales. It examined the effectiveness of individual funding of disability support and aimed to inform policy to improve the provision of disability support. Individual funding is defined in this report as a portable package of funds allocated for a particular person that facilitates control over how they purchase their disability support needs. The way individual funding is organised varies in relation to who holds the funds, which parts of it are portable and what disability support types it can be spent on from which parts of the market. Individual funding is more likely to be used by people of working age with low support needs, by male and non-Indigenous service users, by people with one disability and by people without informal care networks.

Thursday, 8 July 2010

Library Thursdays: Being a Healthy Woman

The Primary Health & Community Partnerships branch of NSW Health worked with women with disabilities and professionals to produce Being a Healthy Woman, a book for women with disabilities covering a wide range of health topics, in plain English.

This is a book to help women with intellectual disability learn more about their health. It also provides a list of resources on disability for women with intellectual disability, their family members, carers or health care professionals. It can be used as a teaching tool to help women with intellectual disability learn about their health.

You can download a single file (5.3 Mb) of the entire book

It has also has been split into 18 small files to accommodate slow download capabilities. Chapter/file titles:

• Acknowledgements and Contents

This page lists the individual chapter files.

CID e-news – June/July 2010

Other resources on health for people with intellectual disabilities:
Health fact sheets from NSW CID

Library resources:
Books beyond words series which include:
Food, fun, healthy and safe
George gets smart (about personal hygiene)
Looking after my breasts (preparing for a mammogram)
Keeping healthy down below (preparing for a pap smear)
Looking after my balls
Falling in love

Special Girls' Business
Secret Girls' Business
Puberty and Special Girls

If you'd like to borrow any of the library resources or anything else, just email us or call.

Wednesday, 7 July 2010

Unqualified used to fill persistent job vacancies (in special education

Sydney Morning Herald, July 6, 2010 Paul Bibby Workplace

AUSTRALIA has been suffering a critical shortage of key education and health workers for a decade, forcing some staff to fill important roles for which they are not qualified, a government analysis reveals.

The revelation is contained in an explanation of the Skilled Occupations List, which sets out the occupations Australia offers as a pathway for overseas workers seeking permanent residency.

The analysis paints a picture of entrenched skills shortages across a range of occupations from engineering and construction project management, to medical administration and secondary teaching.

Among the occupations most desperately in need of new recruits was special education teaching.

The analysis shows that these positions often go unfilled in schools because they require specialist training and experience that most teachers do not have. As a result experienced teachers with no special needs training were being forced to fill these roles in some cases.

The deputy president of the NSW Teachers' Federation, Gary Zadkovich said this reflected an increase in the number of special needs students going into public schools, while training funding for it dropped relative to funding in other areas.

''As a young teacher starting out, choosing special education within the array of teaching options one might have, has become extremely difficult'' Mr Zadkovich said.

This article prompted a letter to the editor from Assoc Prof Jennifer Stephenson from the Macquarie University Special Educaiton Centre, published 7/7/2010:

Specialist jobs need experienced hands
It was good to see that the severe shortage of teachers with qualifications in special education has been recognised (''Unqualified used to fill persistent job vacancies'', July 6). This has not been acknowledged by education authorities, and is particularly desperate in NSW.

Only about 60 per cent of teachers in NSW special schools working with children with severe disabilities and the most complex learning needs are qualified to do so. There is no requirement by the Institute of Teachers for teachers in special education positions, even in executive roles, to have appropriate qualifications.

The situation is even worse for children with disabilities and difficulties in regular classes. Only 53 per cent of itinerant teachers providing support for such students in Sydney have appropriate qualifications. Support positions in schools can be filled by anyone, even teachers in their first year.

We would not accept children with complex medical conditions being treated by GPs without specialist support, yet this seems perfectly acceptable in education.

Special Children’s Christmas Party: Sydney, 1st December 2010

The Special Children’s Christmas Party will be held in Sydney on Wednesday 1st December, at Rosehill Gardens. Children aged 1 - 14 yrs and their families are invited.

A steam train will run from Central to Rosehill as it was such a hit last year.

Tickets are always in demand - contact Priscilla at DS NSW on 9841 4404 or or download the ticket request form here, or from the DS NSW website:

SPCC events are also scheduled for Albury and Wollongong. See for details as they become available.

Tuesday, 6 July 2010

Down Syndrome NSW e-Update, July 2010

The online edition of our monthly information and events bulletin, Down Syndrome NSW e-Update, July 2010 is now available here.

In this issue:

•  Renew membership / donate

•  Positions Vacant at Down Syndrome NSW

•  DS NSW Information Events July - August 2010

•  Buddy Walk Australia 2010

•  Special Children’s Christmas Party

•  Consultations and Inquiries

•  Coffee mornings

•  Social - activity groups and events

•  Launch of book project:

•  Special offer on glasses and frames

•  Entertainment Book 2010 - 2011

•  Vintage by the Sea

•  Yellow Brick Road supports DS NSW

•  Down Syndrome NSW Wine Service

•  Online health lecture series for families

•  "Supported living - Creating a home of one's own with self directed support":

•  Family Advocacy workshops

•  Sport

•  DownsEd online Advice and Consultation

•  Bowel Group for Kids

•  Centrelink

•  Sydney City Disco

You can subscribe to email delivery using the link in the masthead.

Monday, 5 July 2010

More than "taking longer to learn": the experience of intellectual disability

We often describe intellectual disability in terms of the things a person has difficulty with, or cannot do at all, but it is more difficult to see it from their point of view.  Fiona Place has recently published a new reflection on what intellectual disability means for an individual person's day to day life,  and for the people who care for him or her.

.... Yes, children with an intellectual disability do take longer to learn things, however typically their disability also involves ‘more’ than just ‘taking longer’ than other children to master new skills.

Describing the ‘more’, fleshing out the ‘more’ is surprisingly difficult, even when you are the parent of a child with an intellectual disability. Why? Because the ‘more’ will differ person to person as well as change as s/he passes through each life stage. The ‘more’ is fluid, day-to-day, year-to-year.

Furthermore, a person’s disability is only a small part of who they are - and in the same way each of us differ from one another so too do people with intellectual disabilities.

The ‘more’ affects everything.

A child’s family life, schooling and participation in the community.

The significance and effects of the ‘more’ are not widely understood. Given intellectual disability is only a fleeting issue/concern for many in the community this is not surprising.

However, there are women for whom the words ‘intellectual disability’ are more concrete. More concerning. These include women who are informed during their pregnancy their foetus has a chromosomal disorder, women who give birth to a newborn showing signs of ‘difference,’ or women who are told further down the parenting track their child has an intellectual delay.

And it is for these women and the larger community around them I would like to share my perspective of the ‘more’.

 You can read on the entire piece on Fiona's website, Down Syndrome - a Family Perspective, here.

Saturday, 3 July 2010

New National Disability and Abuse Hotline Website Is Now Live

It would be nice not to have to even consider that abuse might happen to people with disabilities, but the reality is that it does.

A new National Disability and Abuse Hotline website has been developed and recently launched by People With Disability Australia Inc. The new website aims to be an effective tool to empower people with disability, their families and carers to eliminate abuse and neglect of vulnerable people in the community and in specialist disability services. It is designed to comply with Web Content Accessibility Guidelines to AA Standard.

As well as providing information about the Hotline services, definitions of abuse and neglect, how to make a report, and links to other useful websites, the website has a variety of current Hotline publications for download.

Friday, 2 July 2010

Positions Vacant at Down Syndrome NSW

Inquiries to CEO, Steve Clarke at  or 02 9841 4408
Down Syndrome NSW is expanding its professional team in the new financial year, developing some new projects, and expanding existing ones.

‘Independent Living Support Initiative’ - Project Manager
The Independent Living Support Initiative model will aim to assist people with a disability who have ageing carers to move into an independent living arrangement through intensive skills development, and by supporting their transition to long term accommodation including meeting their on-going support needs. DS NSW will develop the model in conjunction with service providers and Ageing, Disability and Home Care (ADHC), by building on the Up Up and Away program and existing independent living programs.

Program Research and Development Coordinator
– this role will involve researching, developing and formally documenting and pricing educational modules, programs and services of DS NSW (current and future), developing evaluation tools, as well as documenting issues and collating evidence for advocacy campaigns. The role will also involve researching best practice programs from interstate and overseas, and examining how they may be applicable to NSW.

Marketing and Communications Coordinator
- this role will involve developing written communications in particular, including grant applications, media releases, direct mail, brochures, etc.

Education and Resources Manager
– this role will oversee DS NSW’s expanding educational program including seminars and workshop program for carers and professionals, the DS NSW resources library, our publications and advocacy work

Education and Training Coordinator
– this role involves planning, organising, scheduling and implementing our state-wide educational events to meet the needs of parents and family carers of people with Down syndrome, and similarly, a series of information seminars for professionals working in the areas of health and education who directly support people with Down syndrome.

For more information about any of these positions please contact Steve Clarke on 02 9841 4408 or or check the DS NSW website

New prenatal diagnostic test research in The Netherlands

You might have seen some media interest in reports from a European conference this week, that Dutch researchers are planning to develop a prenatal diagnostic test for Down syndrome based on foetal DNA collected from the mother's circulation.  There are now a number of groups working on similar tests in different countries.  Here is the BBC.s news story about the proposed research at Maastricht University

Thursday, 1 July 2010

Library Thursdays: Movie night

Following on from last week's blog on Will Schermerhorn's informational films, the library also has many films that are entertaining (and also informative in their way). There are several documentaries: the recent Dance Like Nobody's Watching (narrated by Paul Matley about his life and what it means to have Down syndrome), Crossing Tahoe: A Swimmer's Dream (another from Blueberry Shoes about Karen Gaffney's long distance swim across Lake Tahoe in the US), Praying with Lior (about a young man with Down syndrome's life and faith as he becomes a man and celebrates his Bar Mitzvah), Body & Soul: Diana & Kathy (about a woman with Down syndrome and her friend who has physical disabilities and how they support each other living together and advocate for others. (Has English, Spanish, French, German & Arabic subtitles if needed)), Futuro Presente (in Italian with English subtitles, about a group of young adults with Down syndrome learning
pendence skills) and The Teachings of Jon (about a 40 year old man who has Down syndrome and does not talk but his story is told with humour and love by his family who value his life for the teaching he does.)

There are also many dramatic DVDs. There are some short films: Be My Brother, (that won Tropfest in 2009), Boundless (about a 35 year old man with Down syndrome who lives with his parents and tries to make his dream about being a businessman become a reality), and Yolk (about a teenage girl with Down syndrome's interest in sexuality) . Feature length films Mr. Blue Sky (about a young woman with Down syndrome who marries an old friend who stands to lo
se his job because he doesn't have a disability), Afterlife (an excellent and confronting Scottish film about a woman dying from cancer who is the mother of a woman with Down syndrome), the first season of the US TV series,
Life Goes On which starred Chris Burke as a son (who happens to have Down syndrome)in an average all-American family.

There are many other videos, mostly informational. To see the various videos, go to the library list page.

If you'd like to spend these cold nights curled up with a film or anything else from the library, just email us or call.