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.

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.

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.

Positions Vacant at Down Syndrome NSW

Inquiries to CEO, Steve Clarke at steve@dsansw.org.au  or 02 9841 4408

NEW ROLES

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 steve@dsansw.org.au or check the DS NSW website www.dsansw.org.au

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

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

inde

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.

Down Syndrome NSW and ACT DSA co-host information events 30 -31 July 2010

for families and for professionals.

Enquiries: Siena O’Brien, phone: 9841 4411 or email: workshops@dsansw.org.au

Both events will be held at

Canberra Southern Cross Club,

Corner Catchpole & Bowman Streets,

Macquarie, ACT

Friday 30th July  
Playing to Their Strengths - a workshop for teachers

$99 per person (DS NSW and ACT DSA members); $132 per person (Non members) 

incl morning tea, lunch and GST

• Click here to download a flyer and registration form

 

Saturday 31st July

Preparing for School - a workshop for parents whose children with Down syndrome are enrolling in Kindergarten in 2011 or 2012

There is no charge for this event.

• Click here to download a flyer

Flyers and registration forms are also linked from the DS NSW website, under the What’s On? menu, or contact the DS NSW office to have a print copy mailed out.

It's that time of year again .....

Please click here to make a donation to Down Syndrome NSW before 1st July, to help support people with Down syndrome and help us realise our plans for the new financial year.

You can also safely renew or apply for Membership and make a tax deductible donation to Down Syndrome NSW online.

Click here to renew your membership to Down Syndrome NSW and make a donation today. You will receive an automatic email receipt to assist you to claim your donation in your upcoming tax return.

Many thanks!

Consultations and Inquiries

A number of State and Federal government bodies are currently conducting inquiries and consultations related to people with disabilities and their families, and some are in the reporting phase.

A new link at the top of this blog,  Consultations and Inquiries provides a list that will help to keep track of them, and the dates submissions and reports are due. The page will remain at the top of the blog.

"Supported living - Creating a home of one's own with self directed support": In Control Australia forum

Monday August 9 2010

Theaterette, NSW Parliament House, Macquarie St,  Sydney

This seminar will showcase Homes West, Brisbane and My Place, Perth, two services that support people with disability in homes of their own with a combination of formal and informal support.

Access a flier and online registration via the Family Advocacy website here.

In Control Australia is a group of individuals and organisations who aim to bring about systemic policy change in Australia to enable individuals with disability and their families to manage their support. The organisation is an affiliate of In Control UK and works to provide an avenue for information exchange, critical inquiry, dialogue, collaboration, leadership and influence.

Family Advocacy workshops on schooling, supported living, future planning

Family Advocacy is offering a range of workshops for families over the next few months, including:
 
Let's get started... getting ready for school and life  (July and August)
This 3 hour workshop will provide information useful for families who would like their child with disability to attend an ordinary mainstream school, with appropriate support.

The workshop is being offered across metropolitan and regional NSW during July and August.

Practicalities of supported living (10th August)
Is it possible for a person with disability to have a home of their own without a full package of government funded support?

Planning for now, tomorrow and the future (11th September)
One of the most common concerns for families is the uncertainty about the future for their family member with disability.This workshop will identify the ways families can plan for and provide a secure future.

Click here to go to the Family Advocacy website for all details, dates, venues and to download fliers

"Now I See" book project - would you like to contribute?

The call for submissions for the Now I See book project are still open - contact the organisers now if you are interested in contributing:

Submissions are being sought from parents (both mums and dads) who have a child with Down syndrome and who are keen to write about their experiences: of how they dealt with their child’s diagnosis; of what they thought life would be like with their child and how, in reality, it has turned out to be; and the gifts (for instance, acceptance, respect, love, courage and delight) that child has brought into their lives.

The submissions will be compiled into a national book, with the working title Now I See. The book is aimed at raising awareness (and challenging outdated ideas) about life today for children with Down syndrome and their parents. All submissions will be considered. More information: www.nowisee.com.au

NSW Upper House inquiry into services provided or funded by ADHC

This inquiry is a current Legislative Council inquiry conducted by the Social Issues Committee. This inquiry was proposed by Mr Ian Cohen on 24 June 2010, to report on the quality, effectiveness and delivery of services provided or funded by the Department of Ageing, Disability and Home Care (ADHC).

Terms of reference, submission requirements and detail for public hearings are available from the inquiry's webpage.

Four public hearing days are scheduled at the Jubilee Room, NSW Parliament House, on 9th, 10th, 16th and 17th August 2010.
Submissions close: 6 Aug 2010

Final Report Due: 30 Sep 2010
 
Note:  this is a separate inquiry to the ADHC consultations referred to in this post. and this one, posted on 22/06/2010, and from the Ombudsman's current investigation into services for families of children with disabilities, referred to here.

Extension of Disability Care & Support Inquiry Deadline: to 16 August 2010

The Australian Government has asked the Productivity Commission to undertake a public inquiry into a long-term disability care and support scheme.

The Productivity Commission has extended the due date for initial submissions to 16 August 2010. Second and further submissions are welcome.

 

Amongst other things, this inquiry will examine:

• how a scheme should be designed and funded to better meet the long-term needs of people with disability, their families and carers
• how to determine the people most in need of support, the services that should be available to them, and service delivery arrangements
• the costs, benefits, feasibility and funding options of alternative schemes
• how the scheme will interact with the health, aged care, informal care, income support and injury insurance systems
• its impacts on the workforce
• how any scheme should be introduced and governed
• what protections and safeguards should be part of the scheme.

More Information: www.pc.gov.au/projects/inquiry/disability-support

Library Thursdays: Blueberry Shoes DVDs

The cold darkness of the winter solstice this week drew me to the DVD section of the library. It's a perfect time to settle down to a good film. We have great documentaries and fictional stories as well as informational ones. Next week we'll look at the stories but this week I'd like to remind you of the useful, educating and inspirational Blueberry Shoes series that Will Schermerhorn has done. The First 18 Months is well known by most new parents as the first thing suggested to be borrowed. It gives a view into babies with Down syndrome's development from birth to walking. You may want to revisit this film once the early months are past. Arabic, Chinese & Vietnamese translations are due out this month.

The next in the series is Discovery: Pathways to better speech for children with Down syndrome. Some of the chapters are available to view online.

Kids with Down syndrome: staying healthy and making friends includes information on toilet training, behaviour, sleep problems, hearing issues and other health and social topics.

What Did You Say?: A guide to speech intelligibility in people with Down syndrome is another Blueberry Shoes production. This features Libby Kumin discussing the factors that affect speech.

Will Schermerhorn has also created the wonderful Respect public service announcement which we have linked on the right on this blog.

He also has a link on his site to Sue Buckley's lectures done at for the Down Syndrome Association of West Virginia. Not all segments are available yet but there is an interesting question and answer segment that discusses special education and how to make inclusion work as well as other things. Notes from the sessions are also available to download.

Sue Buckley is currently giving many of the Down Syndrome Education International web seminars and online advice sessions. There is a special on the sessions until the end of June to buy one get one free. Also on sale until the end of June are the See and Learn kits and many of the DownsEd books and DVDs. The recordings of their free research briefings that have already taken place can be accessed from their Web events site. You need to click on "Event Recordings" under "Attend an event" on the left. The next live research briefing (on a study on interventions to improve thinking and problem solving skills) is on the 7th of July (9:30am BST, 6:30pm AEST (Sydney)) To register, click here.

If you'd like to borrow any of the Blueberry Shoes DVDs or anything else, just email or call.

Call to change disability bias of migration law

The media interest in Enabling Australia, the recently tabled report of the Inquiry into the Migration Treatment of People with Disability.  Today's Sydney Morning Herald includes an article by immigration correspondent, Yuko Narushima.

Migration Review and disability: LifeMatters podcast

The podcast of yesterday's LifeMatters (ABC Radio National) discussion of  Enabling Australia,  the report of the recent review of immigration policy as it impacts on people with disabilities and their families, is now available to listen to online, or to download as an mp3 file.  Richard Aedy interviewed the review's Chairman, Michael Danby, and the CEO of Down Syndrome Victoria, Catherine McAlpine.

The report itself is substantial (239 pages), and is available to download as a whole, or in chapters, from the Committee's webpage.

The Joint Standing Committee on Migration has made 18 recommendations aimed at  modernising the immigration treatment of people with disabilities,  but has fallen short of recommending that disability be removed from immigration health criteria.  

Senators Sue Boyce and Sarah Hanson-Young have made "additional comments" (pp 201 - 213), stating that ....

..... "we are of the view that the Inquiry provided sufficient evidence to warrant going further than Recommendation 18 to achieve a truly nondiscriminatory, and economically and socially beneficial, approach to migration treatment of disability." 

Their further recommendations are:

Recommendation A: We recommend that the Government remove the exemption of the Migration Act 1958 from the Disability Discrimination Act 1992.

Recommendation B: In the event that Recommendation A is not accepted, we recommend that the Government acknowledge that rejecting temporary visa holders as permanent visa holders solely on the basis of the birth of a child with a disability is discriminatory and develop protocols to address this.

Revised guidelines on cervical spine instability

The UK and Ireland Down's Syndrome Medical Interest Group has recently revised its guidelines on cervical spine instability (which includes atlantoaxial instability and other conditions) in people with Down syndrome, confirming its long established recommendation that X rays are too unreliable for screening purposes in people without symptoms.  This recommendation is in line with that of the Australian SpineCare Foundation issued in 2004.

The revision also makes clearer recommendations on "different priorities and courses of action for those who are symtomatic and those who are not".

The revised guidelines are intended for professional use.  It would be a useful document  (it is a single sheet) for people with Down syndrome to have in their medical files should it ever need to be referred to, or for families to provide their doctor with a link to the online file:  www.dsmig.org.uk/library/articles/CSI%20from%20BACCH%20newsletter.pdf

It is intended that the revised guidelines will be published by the DSMIG with "fully referenced background notes" later in the year.  The interim document was published by the British Association for Community Child Health, March 2010.

Those interested in the ongoing international differences in recommendations about the value of X-ray screening of people with Down syndrome without screening might be interested in a recent review by neurosurgeons from Columbia University in New York:

Hankinson, TC, Anderson, RC, Craniovertebral Junction Abnormalities in Down Syndrome, Neurosurgery, March 2010 - Volume 66 - Issue 3 - p A32–A38 

• The abstract and options to purchase the full text of this paper are available here.

Both of these papers emphasise that where surgery is indicated, techniques have developed and improved considerably, and "increasingly good outcomes are being reported where timely intervention is performed in experienced centres" (DSMIG UK).  Hankinson and Anderson conclude that "..... Surgeons performing upper cervical and craniocervical fusion in children with DS should be highly familiar with the surgical anatomy of the region, as these patients frequently harbor congenital anomalies. High resolution imaging is a critical adjunct to successful operative planning."

Down and out in public health care limbo: letter to the editor

Adrienne Tunnicliffe's letter to the editor of the Sydney Morning Herald, published today, describes a too-familiar combination of circumstances for families of older people with Down syndrome - lack of availability of appropriate supported living options and an unprepared health system:

Like Barbara Grills, I care for a sister with Down Syndrome and Alzheimer's disease (''Dementia a huge challenge for Down carers'', June 21). Unfortunately, coping with the disability and this dreadful disease are not the only challenges such people face as they age. They, and those that care for them, must also negotiate a public health system that does not know what to do with them.

My sister has lived a productive and independent life in her own home. When it became obvious she could no longer cope alone, we faced and won an agonising battle to have her placed on an emergency waiting list for placement in a group home.

The Department of Ageing Disability and Home Care told us it would take more than a year to reach the top of the list. When her dementia was finally diagnosed as Alzheimer's this year, the department told us that due to the rapid progress of the disease in people with Down Syndrome, by the time she reached the top of the list the placement would no longer be appropriate and we would have to pursue placement in aged care, beginning with an aged care assessment.

The team we were referred to refused to assess her because she didn't meet the age criterion. She was left bouncing in limbo, with neither organisation accepting responsibility. Meanwhile, her carers and family waited for an inevitable crisis to occur. It did, and she was admitted through accident and emergency to Royal North Shore Hospital.

An aged care assessment was finally done, but the job of finding a suitable residential placement was given to the family. This task is heartbreaking, frustrating and demeaning. There is no suitable or appropriate placement for people with intellectual disabilities and early onset dementia.

Under increasing pressure from the hospital to relinquish an acute care bed, we accepted a respite place in an aged-care hostel. This will become permanent this month. The hostel is well run, caring, inclusive and willing to accept the challenges of her placement, but all the goodwill and care in the world cannot make it an appropriate solution.

My sister is a feisty and independent woman who has brought love into the life of everyone she has known. She only has a few years left, and she deserves better.

Adrienne Tunnicliffe, Roseville

Have your say about disability services: Stronger Together Consultations

Stronger Together: A new direction for disability services in NSW 2006-2016 is the NSW Government’s 10 year plan for disability services.

During June and July 2010 the Minister for Disability Services, Peter Primrose is hosting a series of consultations across the state to inform the next phase of Stronger Together.

A consultation paper has been developed which reports on what Stronger Together has achieved so far and which asks some key questions about planning, modelling and service delivery in NSW.

The NSW Government invites members of the community, who have an interest in improving disability services in NSW, to have input into the planning process by making a submission.

You can make a submission by:

• Responding to some of the key questions raised in the consultation paper online

• Emailing your comments to strongertogether@dadhc.nsw.gov.au  or

• Posting written comments to:

Stronger Together -  consultation feedback
Ageing, Disability and Home Care
Level 5, 83 Clarence Street
Sydney NSW 2000

Your submission must be received by 5.00pm 19 July 2010.

If you require the consultation paper in an accessible format or in Assyrian, Chinese (simplified), Chinese (traditional), Greek, Italian or Vietnamese please call (02) 8270 2140.

Source:  www.dadhc.nsw.gov.au

Have your say about disability services: Stronger Together Consultations 2

STRONGER TOGETHER 2 consultations – July dates for metropolitan and regional consultations.
Minister Primrose’s office has advised the dates and locations of these important consultations on the growth of disability supports and services for the next five years of the Stronger Together Disability Plan. Minister Primrose is intending to attend all of the consultations, which will inform proposals for disability funding in NSW. Venues and registrations will be advised shortly - contact your local ADHC office for details and to reserve a place.

Drummoyne consultation: Friday 25 June 2.00pm – 4.00pm
Narellan consultation: Monday 28 June 9.00am – 11.00am
Bathurst consultation: Wed 7 July 9.00am – 11.00pm
Dubbo consultation: Wed 7 July 3.00pm – 5.00pm
Gymea consultation: Thursday 8 July 9.00am – 11.00am
Wollongong consultation: Thursday 8 July 2.00pm – 4.00pm
Queanbeyan consultation: Friday 9 July 3.00pm – 5.00pm
Tamworth consultation: Wed 14 July 11.00am – 1.00pm
Parramatta consultation: Thursday 15 July 10.00am – 12.00pm
Chatswood consultation: Thursday 15 July 4.30pm – 6.30pm
Wagga Wagga consultation: Friday 16 July 11.00am – 1.00pm
Newcastle consultation: Monday 19 July 2.00pm – 4.00pm

Source:  NCOSS Ageing and Disability Updates, 17th June 2010

Immigration review - report to be tabled in Parliament

The report of the Australian Parliamentary Joint Standing Committee on Migration -  Immigration Treatment of Disability is scheduled to be presented to the House of Representatives tonight, by the Committee Chairman, Michael Danby (MP for Melbourne Ports).

The report is now available online here.

Catherine MacAlpine, CEO of Down Syndrome Victoria will be interviewed on Life Matters, Radio National (ABC) tomorrow morning (Tuesday 22nd June) at 9.05 am, about the report.

Click here for earlier posts about Immigration to Australia, and this review.

Dementia highlighted in press, new project for DS NSW

The increased incidence of dementia amongst older people with Down syndrome, and the challenges it poses,  was highlighted in an article by the Health Editor, Julie Robotham, in today's Sydney Morning Herald, accompanied by a lovely photo of Trevor Sweeney and his sister, Barbara Grills, which is unfortunately not on the article's web page.

The article also mentions a very welcome new one year grant to Down Syndrome NSW from the Australian Government, to develop information services for family and professional carers of people with Down syndrome and dementia.  The project is in the early planning stages, and details of resources and events will be announced shortly.

Clarification- Steve Clarke, CEO of Down Syndrome NSW did not actually say that establishing a baseline for people with Down syndrome in their 20s is "controversial" - it is well accepted that such a practice is useful, although there is no single, universally accepted assessment process.  Down Syndrome NSW supports appropriate assessment, at intervals as recommended by experts in the field. Those experts would also caution against over-assessment.

Down Syndrome and Alzheimer's Disease - Australian guidelines, published in 2009, available for free download.  Print copies are available free from Down Syndrome NSW - call our librarian, Kathi Beck, on 02 9841 4410, or email library@dsansw.org.au

My Perspective: UK photography competition winners announced

The winners of the first DSA (UK) My Perspective photography competition were announced last night in London. The competition was open to photographers with Down syndrome. You can see the results here. 

Family Voices

Children with Disability Australia (CDA) is a newly launched national organisation (based in Melbourne) focusing on systemic advocacy for children with disabilities and their families, at the Federal level.  Many of the issues that CDA will address will be highly relevant for families of children with Down syndrome.

The CDA website is still under development, but they have published the first issue of their online magazine, Family Voices, that can be viewed on the website's home page. The first feature article is "Celebrating Sam", written by Deb Jeffris, about her son who has Down syndrome - Sam and his sister are also on the cover.

CDA membership is free for children with a disability and their families.

Library Thursdays: Puberty and Special Girls

Puberty and Special Girls by Rose Stewart, Heather Anderson & Fay Angelo, 2009, is the authors' second book for girls with special needs. Special Girls' Business is known as THE book for explaining how to manage periods for girls with Down syndrome and other special needs. Puberty and Special Girls has a section on managing menstruation, but it also covers all aspects of puberty--body changes, hygiene, feelings, and sexuality. Illustrator Jeff Taylor has made the pictures a little more contemporary than in Special Girls' Business which may appeal more to that age group.

I think all the books by these authors are outstanding. If you just want a simple book on initially managing periods, I would look at Special Girls' Business. However, Puberty and Special Girls covers so much more that if I was only going to read one book, this would be the one although I can see that some might find it a bit too much information.

If you'd like to borrow Puberty and Special Girls or Special Girls' Business or any other resources in the library, just call or email.

Secret Girls' Business website

Other books by these authors:

Secret Girls' Business

More Secret Girls' Business

Special Boys' Business

Secret Boys' Business

Other useful materials:

Talk to Me - a personal development manual for women and girls with Down syndrome and their parents

Preparation for Menstruation - from DSA UK

Final reminder about June events

The next event in the free online series about Down Syndrome Education International's research will be webcast on Friday 18th June, Sydney time:

Can we improve children's working memory skills? - results of a small training study and next steps, presented by Stephanie Bennett

We have started a pilot to investigate a computer-based memory training programme. Research has shown that this programme benefits other children with working memory delays. These studies should help to identify effective methods for improving working memory skills that are central to many aspects of speech, language and general cognitive abilities. Register to attend...

•  Friday, 18 June 2010 09:00 London BST (18:00 Sydney, 13:30 New Delhi, 11:00 Moscow, 10:00 Paris)
 
These events are scheduled for next week - click on the titles to link to details:

• Healthier Lives - Western Sydney Forum:  Blacktown, Tuesday 22nd June (WSIDSG and NSW CID) 
• Playing to Their Strengths:  a DS NSW workshop for teachers, Newcastle, Friday 25th June 
• Healthy Adulthood: a DS NSW event for parents and carers, Kiama, Friday 25th June 
• Preparing for School: a DS NSW workshop for parents, Newcastle, Saturday 26th June 
• Preparing for School: a DS NSW workshop for parents, Harris Park, Wednesday, 30th June

 And this online lecture for parents will be webcast from Children's Hospital Boston, on 28th June, and then will be available, along with notes, online:

• Allen C Crocker Speaker Series: Celiac Disease and Down Syndrome

The Specials: Webby Award

If you follow The Specials, you are probably aware that they won a Webby Award in the "Reality" category this year. Links on TheSpecials home page show the cast's reaction to the announcement, and their campaign videos, and this one is a very short video of them accepting the award in New York this week.

(The Webby Awards honour international excellence on the Internet: www.webbyawards.com  )

NSW State Budget 2010-2011: access to health care for people with intellectual disabilities

NSW Health Budget 2010/11 is a 31 page document, available to download here.  While people with intellectual disability are of course entitled to access all health services available to every NSW citizen, the need for specialist health care service continues to be the subject of an active campaign.  The NSW Health budget document includes this line, :

$0.5 million to support people with an intellectual disability and their carers to improve their access to health care. (p.11)
 
No details are given about where or how this money will be allocated - we are actively seeking clarification, and will get back to you as soon as we know more!

Language and reading intervention trial - research briefing

From Frank Buckley, CEO of Down Syndrome Education International:

Come along to a free online briefing tomorrow (Thursday) or Friday to find out more about our classroom language and reading teaching intervention trial - the largest controlled intervention trial of a targeted educational intervention for children with Down syndrome. The trial is just entering its second year and we hope to start to get some preliminary results later in 2010. This briefing will describe the study, the particular teaching techniques being evaluated and the outcomes we are hoping to establish.


Last year - with £440,000 ($750,000 or €500,000) pledged by the UK Big Lottery Fund - we began largest study to date of a practical and targeted educational intervention for children with Down syndrome. The three year study is undertaking a robust evaluation of a language and reading programme designed for use in schools through a multicentre, randomised trial. Our UK research team is working on this project with partners at the Centre for Language and Reading at the University of York.

The briefings are free to access at the following times:

* Thursday 10 June at 5.00pm London time (BST): 12.00pm New York, 9.00am Los Angeles, 6.00pm Paris, 7.00pm Moscow, 9.30pm New Delhi

* Friday 11 June at 9.00am London time (BST): 10.00am Paris, 11.00am Moscow, 2.30pm New Delhi, 6.00pm Sydney

Audio is available over the Internet or via a telephone conference.

Visit our online meetings site to register for the event: http://go.downsed.org/webevents/  

(Tip: If you want to check your computer is setup in advance of the session, under the "Set Up" heading to the left click on "Event Manager" and follow the instructions.)

For further information about other research briefings visit http://go.downsed.org/?research-events-2010

Library Thursdays: Grown Man Now

Retired special education teacher, academic, writer and mother, Jane B. Schultz has written a wonderful book, Grown Man Now, (in2wit:Kingsport, Tennesse, 2008) about her life and family, which includes her son, Billy, who has Down syndrome and was born in the 50s. The family lived in the South of the United States. Dr. Schulz describes the changes during the civil rights period, especially those in special education. She was a pioneer of inclusion and the book is an interesting look into the history of special education from both the professional view and the familial view. The book looks at the various jobs and living situations Billy had--from sheltered workshops to open employment, from group homes to independent living to living with family. Dr. Schultz's honest account of the challenges, problems, joys and benefits of life and in particular life with a family member with Down syndrome, covers the important concerns of all families of people with Down syndrome in a helpful, interesting way. It clearly demonstrates the ways our life directions can be affected by all family members and that everyone has a role in the world.

I highly recommend the book for readers who love family stories. The view into 50 years of a life of a man with Down syndrome is wonderful. Both Billy and his mother are inspiring.

Related links:

Grown Man Now website

Sharing with Dr. Jane B. Schulz Blog

Jane B. Schultz Video Interview Series

Onward Crispy Shoulders by Mary Hakkinen and Madonna in the Suitcase by Huberta Hellendoorn are other stories of family with adults with Down syndrome that may be of interest.

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

NSW Budget 2010-2011: $2.4 billion for ageing and disability services

Louise Hall reports in today's Sydney Morning Herald, on the NSW budget's boost to social services, "Disability and Ageing gets a 9.1 per cent rise to $2.4 billion, but the second phase of the 10-year $1.3 billion Stronger Together disability reforms are not in the forward estimates."

Media Release from Ageing, Disability and Home Care following the tabling of the 2010-2011 NSW State budget: 8 June 2010

The Keneally Government’s budget for services to people with a disability, their families and their carers and older people will eclipse $2.4 billion, up $206 million from 2009-10.

NSW Minister for Ageing and Minister for Disability Services, Peter Primrose, said the massive investment reflected Labor’s spending and policy priorities outlined in Stronger Together, the NSW Government’s 10-year plan to expand services for people with a disability.

“The 2010-11 Budget is a tangible delivery on the Keneally Government’s commitment to deliver better services and facilities for NSW’s most vulnerable members – frail elderly people and people with a disability,” Mr Primrose said.

“This year the Keneally Government has allocated a total of $2.468 billion to Ageing, Disability and Home Care, an increase of 9.1 per cent over the previous year.

“Over the past five years, the budget for ageing and disability services has increased by $710.4 million or 40.4 per cent, enabling the NSW Government to deliver services to more than 280,000 people across the state.

“This Budget represents the fifth year of the NSW Government’s historic reshaping of the sector under Stronger Together, which will deliver an extra $1.3 billion in funding over its first five years.

“This will fund continued increases in existing services, such as respite for carers of people with a disability who need a break from their caring responsibilities, therapy services for children and supported accommodation for people with disabilities who can not live at home.”

Mr Primrose said that key areas of focus and expenditure for 2010/11 included:

● $203.4 million in 2010-11 (an increase of $48.3 million over 2009-10) to fund 401 new supported accommodation places. Over the period 2006-07 to 2010-11 there will be an additional 1,370 places, with costs over the five years totalling $590 million;

● $26.2 million in 2010-11 (an increase of $2.9 million over 2009-10) to prevent young people entering nursing homes, improve the circumstances of younger people in nursing homes and develop alternative models of support for young people living in nursing homes. Over the period 2006-07 to 2010-11 $80 million will be have been spent;

● $6 million in 2010-11 to provide alternative accommodation support for people with a disability located in Boarding Houses;

● $71 million in 2010-11 (an increase of $13.3 million over 2009-10) to increase support from three days a week to four days a week (and five days for people with very high support needs) for people with a significant disability who leave school but are unable to enter the workforce. Over the period 2006-07 to 2010-11, an estimated 6,240 people will be supported via the Agency’s post school programs at a cost of $235.3 million;

● $42.4 million in 2010-11 (an increase of $4.8 million over 2009-10) for an additional 103 attendant care (intensive in-home support) places. Over the period 2006-07 to 2010-11 an additional 612 places will be provided at a cost of $120.1 million;

● $11 million in 2010-11 (an increase of $2.7 million over 2009-10) to provide intensive support packages for children and young people and their families. Over the period 2006-07 to 2010-11 an additional 1,840 packages will be provided at a cost of $31.2 million;

● $14.2 million in 2010-11 (an increase of $2.3 million over 2009-10) for additional therapy places. Over the period 2006-07 to 2010-11 therapy places will increase by 2,880 at a cost of $40.6 million;

● $34.3 million in 2010-11 (an increase of $2.4 million over 2009-10) to provide 159 new flexible respite packages. Over the period 2006-07 to 2010-11 an additional 2,243 packages will be provided at a cost of $110.7 million;

● $11 million in 2010-11 (an increase of $1.2 million over 2009-10) for day program places. An additional 780 places will be provided over the period 2006-07 to 2010-11 at a cost of $33.3 million;

● $5 million over four years ($1.5 million in 2010-11) to provide intensive assistance for 410 children and their families with managing problem behaviours, both at home and at school;

● $585.8 million in 2010/11 (an increase of $48.1 million over 2009-10) for HACC services which include domestic assistance, social support, meals, transport, case management and respite; and

● $2 million in 2010/11 (an increase of $2.0 million over 2009-10) for additional support and early intervention for autism.

Mr Primrose said that the Government had also made provision in the budget to start or ramp up trials of new services for people with a disability.

“The extra 103 attendant care packages will coincide with an expansion of a program where people self manage the services that they receive,” he said.

“This will allow people to be more independent and have input into their services – so that they get the services that they need, when they need them.

“The Keneally Government has also allocated $79.3 million in capital expenditure for this year, including $56.8 million to continue work on building or renovating existing accommodation facilities and $9.2 million to start work on new accommodation.

“In this budget we have sought to provide the additional funding needed under Stronger Together to make an impact on service levels immediately while planning for long-term, sustainable changes that will deliver a more flexible, efficient, transparent and fairer system.

“There is more that we can do – and we are doing more. The Keneally Government is providing more therapy, more accommodation, more respite and more services that people with a disability, their families and the carers need,” Mr Primrose said.

NCOSS budget analysis webcast Wednesday 9th June

NSW Council on Social Services (NCOSS) is holding a seminar on the NSW State Budget today, Wednesday 9 June at 2pm.

For those unable to attend but still interested in NCOSS analysis/response to the Budget, it will be live streamed or webcast it from 2pm if you want to watch it on your computer. Here is the weblink: www.ncoss.org.au/webcast/

Scrapheap Adventure: the video!

When too much Scrapheap Adventure is never enough ..... relive it on You Tube:

"Preparing for School" workshops, Newcastle and Sydney flyers

Flyers with full details are now available to download for the two Preparing for School workshops scheduled for June:

• Saturday 26th June, Apollo Hotel, Charlestown
• Wednesday 30th June, DS NSW, Harris Park

Online health lecture series for families

This online series of lectures is another generous initiative of the very proactive Down Syndrome Program at Children's Hospital Boston, and is freely available to a worldwide audience. The program is run by Dr Brian Skotko, Dr EmilyDavidson and Angela Lombardo.

Oftentimes, we find ourselves with little time during clinical visits to discuss important topics, common to so many families. With this in mind, we wanted to honor the legacy of our Program's mentor, Allen C. Crocker, by initiating a lecture series.

The Allen C. Crocker Lecture Series is designed for parents and families members seeking quality information from experts on a range of topics related to Down syndrome. These lectures can be viewed, for free, at  www.childrenshospital.org/downsyndrome

Some details:

* The Series will take place on the fourth Monday of each month from 7:00-8:30 p.m., unless otherwise noted. 
 
* Families can view the lectures live via simulcast by following the instructions posted on our web page.

* Families can access any of the lectures--and accompanying handouts--on our web page at any time for free.

Already, we have posted parent lectures on

• Mental health issues for people with Down syndrome
• Feeding and swallowing issues in infants with Down syndrome.

Over the next two years, we hope to develop an online library of resources.

Upcoming talks:

• June 28, 2010 - Celiac and Down sydnrome by Dascha Weir, MD
• July 26, 2010 - Nutrition and Down sydnrome  presented by Kathryn Brown, MS, RD, LDN
• August 23, 2010 - What Your Other Children Are Thinking: Sibling Issues presented by Brian Skotko, MD, MPP and Sue Levine, MA, CSW
• September 27, 2010 - Obstructive Sleep Apnea in Down sydnrome  presented by Dennis Rosen, MD 
• October 25, 2010 - Toilet Training and Down sydnrome  presented by Kimberly Dunn, PNP 
• November 15, 2010 - Down Syndrome presented by Allen C. Crocker, MD

We will post reminders nearer to each date.

June 2010 quarterly publications

Down Syndrome NSW quarterly publications for June 2010 have been mailed to members and subscribers.

Voice is a 24 page members journal, published quarterly by Down Syndrome NSW in collaboration with Down Syndrome Victoria.  The June 2010 issue has a them of Health Matters.

After two trial issues, we invite readers' feedback via this survey that can be completed online.

To subscribe to Voice, and the DS NSW supplementary materials mailed quarterly, contact Angela Adams, on 9841 4409 or admin@dsansw.org.au

Click here to read Down Syndrome NSW News, Winter 2010 online

Click here for Speak Up!, Issue 37, Winter 2010 online

Click here for the Down Syndrome NSW Update, June 2010 e-edition

Starting School workshops for parents - Newcastle and Sydney, June

Starting School is a  workshop for parents whose children with Down syndrome are enrolling in Kindergarten in 2011 or 2012.  Two events are scheduled for this month

Saturday 26th June

Newcastle

(time and venue to be confirmed)

Wednesday 30th June

Harris Park
7.30 - 9.30 pm

Contact Judy or Lynn at DS NSW, on 9841 4401 or support@dsansw.org.au for further details.

Library Thursdays: Through the Maze: 2010 edition

The Association for Children with a Disability NSW (ACD NSW) have published a 2010 edition of Through the Maze: Information and support for parents of children with a disability in New South Wales. It explains what is available for children with disabilities and where to access early intervention, therapy, counselling and support services, schools, special equipment, legal and financial matters, medical and health issues, accommodation, transport, recreation, advocacy and a glossary of acronyms. It covers all disability needs so many services do not apply to children with Down syndrome, but the criteria for the services is made clear.

The information from the 2008 edition has been updated and reorganised. There are new sections on: feeding and nutrition, siblings, networking, alternate therapies, toys reading resources and the future of disability services.

The world of disability services can be confusing. This publication brings together the wide range of what is out there and is a very useful reference.

We have a few copies available for loan in our library or you can access the publication online at the ACD NSW website.

If you'd like to borrow this or anything else from the library, please call or email us.

Special offer on glasses and frames

Elite Optical is a leading supplier of optical lenses to Optometrists across Sydney and NSW.

The Director of Elite Optical, Peter French is a friend of Down Syndrome NSW Patron, Craig Wing, and is keen to support families of children and adults with Down syndrome by offering significant discounts on glasses and frame packages.

Peter said, “I know glasses can be a significant extra cost for families of children with Down syndrome, especially where the level of astigmatism or vision impairment is high, and non-standard lenses are required. It’s important that children with Down syndrome have their eyes tested regularly (at least every 12 months is recommended) to ensure their lenses are correctly prescribed.

I know that can be an expensive business and I want to make it as affordable as possible for families to ensure their child’s prescription and glasses are kept up-to-date.”

If you are interested in receiving a special Elite Optical – Down Syndrome NSW discount card which can be used when ordering your child’s glasses and frames, please contact Priscilla at Down Syndrome NSW on 9841 4404 or Priscilla@dsansw.org.au

Note: Offer available in Australia only. Offer available to carers of children with Down syndrome and to adults with Down syndrome when purchasing frames and lens packages for the person with Down syndrome only. Full details of offer and terms and conditions will be made available upon application.


(Image: dreamstime.com)

Consultation with families of children with a disability: NSW Ombudsman

Do services work together to help you?

Are you getting help to support your child to live at home?

We are very interested to hear from families about:

Specialist disability services including:

• information about disability services and being taken on to receive services

• intensive family support and other family support

• respite

• early intervention

• therapy

• case management

• transition support services (transition to school, from school to work, and when leaving care to adult disability services.)

• support for carers

• physical aids and equipment

• the way specialist services work together and link to mainstream services for families and children.

Services for families in the community such as:

• child care, out-of-school hours care and vacation care

• pre-school and primary and secondary school

• health services

• public transport

• sport and recreation.

It is important that children with a disability and their families get the help they need. We will let government know what families say about the support and services they need.

Share Your Views

You can share your views in person, by telephone or by email. To participate please contact:

Christine Flynn, Project Manager Telephone: (02) 9265 0410 email: cflynn@ombo.nsw.gov.au

Linda Blue, Project Officer Telephone: (02) 9286 0950 email: lblue@ombo.nsw.gov.au

Privacy and confidentiality

What you tell us will be kept confidential by our office. Your personal information, for example, your name, will not be used in the report. Individual services will not be named – we are looking at the overall system.

Independence

The NSW Ombudsman is independent of government and community and disability services.  

• Click here to download a .pdf flyer