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

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.

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

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 www.ndss.org  (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: bfinkelstein@ndss.org

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 lizdore@bigpond.com  

• www.relationshipsandprivatestuff.com

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:

Special Connection Homeschool

Hannah's Shenanigans

Parenting a Child with Down Syndrome by HS Schulte

Listservs:

Homeschooling and Down syndrome

Home Education and Down syndrome

Other:

Home Education requirements in NSW

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.

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 www.focusonability.com.au . 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.
 
Thanks.

A slight hitch with the technology .....

Down Syndrome NSW is currently experiencing some difficulty with the servers hosting our website, www.dsansw.org.au   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 admin@dsansw.org.au ) 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.

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

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 admin@thejunctionworks.org  or tel: 02 9606 9628

www.thejunctionworks.org

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

 

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

PENRITH PANTHERS, MULGOA ROAD, PENRITH
 
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

Direct funding success story

New helping hand for those with disabilities
ADELE HORIN

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.

FACHSIA website: www.fahcsia.gov.au/about/publicationsarticles/research/occasional/Pages/op29.aspx 

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 here.

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

• Acknowledgements and Contents
• ASKING QUESTIONS ABOUT YOU
• BEING HEALTHY AND HAPPY
• HEALTHY EATING
• FEELING SAD AND FEELING HAPPY
• PUBERTY
• HAVING YOUR PERIODS
• GROWING UP
• CLOSE RELATIONSHIPS AND SEX
• SAFER SEX
• DECIDING TO BECOME A PARENT
• BEING PREGNANT
• HAVING A PAP TEST
• BREAST HEALTH
• MENOPAUSE
• GETTING OLDER
• GRIEF AND LOSS
• OTHER HELPFUL RESOURCES

This page lists the individual chapter files.

Source: CID e-news – June/July 2010

Other resources on health for people with intellectual disabilities:

Talk to Me: Personal development manual for women and girls with Down syndrome and their parents

Health fact sheets from NSW CID

DSA UK's Looking after yourself

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.

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 priscilla@dsansw.org.au or download the ticket request form here, or from the DS NSW website: www.dsansw.org.au

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

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