Weekend reading and viewing: 29th - 30th June 2013

Interview with actor Sarah Gordy,

Haley Goleniowska, Downs Side Up, 24th June 2013
Sarah is a beautiful, talented, humorous actor, (you may have seen her in Upstairs Downstairs or Holby City), a charity ambassador, a public speaker and a campaigner. Sarah also has Down's Syndrome, but is is not all she is and she does not let it define her.

13 thoughts for your 13th birthday
Darius Andaya, Down Syndrome Foundation (Vancouver), 25th June, 2013
... He has the temperament of a young man, he has a crush, his voice has deepened, and he’s starting to value his privacy. The years crept up on us really quickly, and without us even noticing it, he’s now a teenager.

Tired of labels
Big Blueberry Eyes, 27th June 2013
Why do people with disabilities have to continuously be labeled and have label upon label stacked upon their shoulders? Can't they just be? Can't they just exist as iswithout having to fit in to boxes and labels?

It's a matter of geography

Rachel Leslie, Unless, 26th June 2013

Our visit to Holland has been anything but scenic. We didn't draw the short straw with many of the normal health concerns associated with DS, my perfect daughter's heart has the tiniest of murmurs, her ECG was fine, she was blessed. When she was in Prep we found out that she has Grave's Disease (hyperthyroidism). Usually people with DS are more likely to have hypothyroidism, but ... the toll this disease has taken on our little girl have made living with a child with an intellectual impairment just that little bit harder.

10 Tips for Selecting Toys for Your Speech Delayed Child

Katie Yeh, Friendship Circle, 25th June 2013

As a speech-language pathologist, I am asked what toys I recommend most for children with speech and language delays all the time.

Jack and Mollie = Friendship | Kids are Kids

5 boys + 1 girl = 6, 19th June 2013

Tonight I met two amazing people. Two people who are friends. These two young adults are beautiful in their own way but together they are superstars ...These two are the definition of a beautiful friendship that is there because they want it to be.

Individualised funding fuels Damien Conte’s art practice
Accessible Arts Feature, 21st June 2013
Cheryl Gardner, a Living Life My Way Champion from northern NSW, and her son Damien Conte have been self-managing Damien’s Community Participation funding since 2008. Damien is a young artist with autism. He has a limited ability to communicate verbally and uses painting to share his inner world with others. Cheryl shares her story of how individualised funding has allowed Damien to develop his passion for painting.

Taking a step towards a truly inclusive workplace
Karen Palenzuela, Ramp Up,  28th June 2013

Deb Russell headed the Disability and Inclusion division of US drugstore giant Walgreens where she successfully championed an initiative to employ people with disabilities. The initiative started with one Walgreen distribution centre with the result of having people with disabilities make up 10 per cent of the centre's workforce. The initiative proved so successful that Walgreens has applied it to its 20 other distribution centres and is currently working to put it into operation across its entire network of 8000 stores. ABC Ramp Up spoke with Deb Russell about her work and getting people with disabilities into meaningful employment.

Special Olympics Asia Pacific Games 2013 opening ceremony

Visit the Special Olympics Asia Pacific Games 2013 website for information about the opening ceremony and tickets sales.

A word picture

From the (US) Military Special Needs Network: Do you have a friend or family member that continues to use the r-word and you don't know what to say to them? Here is a simple visual for you to show them ...

We understand that there is a place for correct usage of this word, but generally those that are in a situation to use the word correctly do not need a flow chart for how it used. (Military Special Needs Network)

Library Thursday, 27th June 3013

Recently published works by Down Syndrome NSW members - well done to both Anne and Sigrid for telling their stories.

Art from Adversity: A Life with Bipolar

Anne Naylor
Anne has written a book that is both memoir and information guide. She writes of her experiences with art, bipolar, advocacy and being the primary carer of her 25 year old son, Joshua. The book is illustrated with her artworks.

She is dedicated to raising awareness, challenging stereotypes and fighting the stigma of disability and mental illness. To read more about Anne her website, and blog.

Down Syndrome: Where Do I Start?

Sigrid Kaly
Sigrid's book has been revised and republished as an eBook and is available from Amazon, in both English and German.

"To raise a baby with Down syndrome is a challenge for the whole family. The Kaly family took up this challenge with a heavy heart 44 years ago. This book describes their experiences, which they would like to share with other parents and the general community. Their positive message is: Down syndrome is not a tragedy – it is an issue that can be addressed. First and foremost, a person with Down syndrome is a human being with the same needs as everyone else."

Australian Chamber Orchestra: Music and Movement

Many of the young people with Down syndrome are featured in the beautifully expressive photos that accompany this ACO blog post  about a program initiated by the fabulous Dean Watson. Worth reading and a good look at the whole gallery. Click on the title below for the link :

ACO music and movement
Australian Chamber Orchestra blog, 20th June 2013

As part of our rapidly expanding Education Program, we have just completed our first round of music and movement classes designed to provide access to the arts for adolescents with disability ... “One of my students says she is starting to ‘hear’ music in her daily life and thinking of what movement she can make.” ... "...my daughter told me she was still too shy to dance in the movement class, I saw her dance at home. Before, she always copied dance from videos or moved according to a teacher’s instruction. But now she dances in her own way, full of enthusiasm … "

Free information sessions about the NSW Supported Living Fund, Round 3

Ageing, Disability and Home Care (ADHC) along with Carers NSW are holding information sessions for people with disability, their families and carers who want to know more about the Supported Living Fund Round 3, which opened this week, with applications closing in August. Free 2 hour information sessions will be held across NSW:

 

• Click here to download the flyer with further information about the information sessions, what will be covered, dates and locations

Help us make a difference by making a donation: end of financial year appeal

Down Syndrome NSW is an independent, parent run, registered charity established in 1980. As an organisation we encourage people with Down syndrome to reach their potential as valued citizens within the wider community. We represent the interests of, and are dedicated to making a difference to, the lives of people with Down syndrome, their families and friends.

Our mission is to support and promote the interests of all people with Down syndrome, their families and carers, in the major aspects and transitions in their lives. We are dedicated to improving the wellbeing and quality of life for people with Down syndrome and seek to empower and enable our membership and supporters through:

• Contact support for families and carers of individuals of all ages with Down syndrome.
• Generating and disseminating information to our membership, professionals and the community at large.
• Creating and promoting innovative programmes which further the development of individuals with Down syndrome.
• Raising positive public awareness about Down syndrome.
• Promoting equal rights for people with Down syndrome both individually and collectively. Contributing to the shaping of Government policy and service provision.
• Representing the interest of our constituency in local state and national forums.
• Encouraging and assisting research initiatives into issues relating to Down syndrome.
• Raising funds for the above purposes 

The continuing work of Down Syndrome NSW depends on the generosity of its members and the general public in supporting its fundraising efforts.

This tax time please make a tax deductible donation and help us raise much needed funds to continue making a difference.

Please encourage friends, family and colleagues to also make a donation by sending this link http://dsnswtaxappeal.gofundraise.com.au

Some quotable quotes from the My Choice, My Control, My Future national conference

1035 participants registered for the  My Choice, My Control, My Future national conference on DisabilityCare Australia, in Melbourne, over the last two days (23rd and 24th June). All sessions were filmed and will be put up on the DisabilityCare website in about a week. Every Australian Counts will also attempt to make some transcripts available (links will be posted here).  Here is a selection of postings on social media from participants during the proceedings:

".... no one should underestimate the importance of what we are about to achieve" Jenny Macklin, Minister for Disability Reform, opening address 

Capacity building needs to also be for parents, to help lift their eyes and shift their horizons beyond the low expectations set by professionals and service providers. Kirsten Deane

When people ask about you, when you are missed, you know you're included.

Fantastic speech by Disability Discrimination Commissioner Graeme Innes, who is amazed at the quick passage of Disabilitycare and says that the disability genie is well and truly out of the bottle and not going back anytime soon.

Government cannot keep telling private enterprise to employ people with disability when their own employment figures are shameful! Graeme Innes, Disability Discrimination Commissioner

Important to keep using the term NDIS alongside DisabilityCare, to ensure maintained focus on insurance aspect. All Australians are shareholders in NDIS.

Four key areas of necessary focus for board of DisabilityCare: sustainability of the scheme; choice and control; mission is achieved; insurance model is implemented well and maintained.

There is no link between Disability Support Pension and DisabilityCare. DisabilityCare unding will not be considered as income, so it will not affect pensions.

"It's been an extraordinary two days, so many people from across the sector with one purpose, to make DisabilityCare Australia the very best system in the world. To have that sense of unity along with such extraordinary diversity makes it all the more significant. 

It contrasts with conferences a year ago where every second sentence began with "My concern is...". This week it has changed to "My suggestion for improvement is…", which means we have reached an important milestone. 

The papers presented here and other work being undertaken in the states will be examined by DisabilityCare Australia, and then decisions made as to where research should be directed. So there will be a rich research agenda alongside the practice in launch sites. The principle of co-design must be a characteristic of the future. 

I very much looking forward to working with you ... with a great sense of unity, energy and inspiration". 

Every Australian Counts reporting the closing remarks of Bruce Bonyhady, Chair of DisabilityCare Board.

Down Syndrome NSW workshops: Central Coast, July

Playing to their Strengths

Parent Support manager Judy Davidson will be heading to the Central Coast to present her popular and informative one-day workshop for teachers and school personnel working with students with Down syndrome in primary school settings.

Friday 19th July 2013

Gosford

To register your interest contact admin@dsansw.org.au

• Flyer
• Registration form 

Weekend reading and viewing: 22nd - 23rd June 2013

Advice about Down syndrome for fathers in honor of Father’s Day
Rob Arnold, Treyton's Posse, 12th June 2013
Having a child diagnosed with Down syndrome is not what you think it will be. If you are like most,you have had very limited experience with people who have Trisomy 21 or other cognitive disability. As a result you are forced to make mental references to either the TV show “Life Goes On” or to the show “Glee.” Maybe you also had an aunt that had a neighbor with Down syndrome or something as equally disconnected from your personal experience. Forget all of that. Do you want to know why I am telling you to forget the limited knowledge you have? It’s because none of those experiences were about you and your child.

14 mental health tips for children with learning disabilities
Emma Sterland, Friendship Circle, 18th June 2013
... Identifying mental health problems in someone with special needs, can be challenging, but the key is noticing any changes in your child’s usual pattern of behavior. It’s important to know what is usual for your child, and to be aware of any significant changes ...

3 best lessons from my 3 year old with Down syndrome
Maureen Wallace, allParenting.com, 17th June 2013
Imperfection is my new perfection, which it turns out, is just what I needed.

Australian parents-to-be buy into 'safer, accurate' Down syndrome test

Deborah Gough, Sydney Morning Herald, 18th June 2013

A new safe, more accurate method of detecting Down syndrome is being used in Australia, dramatically decreasing anxiety among expectant parents ... David Amor, a clinical geneticist at the Murdoch Children’s Research Institute in Melbourne, said the test had been available in Australia for about three months. Blood specimens are sent for testing to the United States at a cost of $850 to $1250, but Dr Amor expected the price to come down by the end of the year to about $650.

I’m Removing My Prenatal Testing Halo

Jisun, Kimchi Latkes, 19th June 2013
I have had my moments of self-righteous judgement. Shocking, I know. I’ve strapped on my righteous halo in secret, just for comfort ... I want to say some things to the mothers out there facing the difficult choices that line the road to motherhood. Yes, to mothers. In our still very patriarchal society, mothers bear an inordinate amount of shame and judgement for their reproductive choices. So yes, I am talking to you, sisters.

Roundtable on the mental health of people with intellectual disability
Background paper prepared by NSW Council for Intellectual Disability (NSW CID) and others, May 2013

NSW CID organised the roundtable in partnership with Department of Developmental Disability Neuropsychiatry UNSW, Queensland Centre for Intellectual and Developmental Disability and the Australian Association for Developmental Disability Medicine ... funded by the Australian Government Department of Health and Ageing. ... Speakers included parents, advocates, leading doctors and disability professionals. The roundtable participants accepted the need for wide-ranging action to address the very poor mental health care currently received by people with intellectual disability. The roundtable communiqué will also be available online.

6 Secrets of Strong Special Needs Dads
Suzanne Perryman, Huffington Post (Parents), 16th June, 2013 (Fathers Day in the northern hemishpere)

I recently wrote about the secrets special needs moms won't tell you, but heard from many special needs fathers that they felt left out. My husband, Zoe's Dad was my inspiration to write about what I know about special needs dads.

Fresh ideas on disability and jobs
Craig Wallace Ramp Up 20 June 2013

The welcome introduction of the National Disability Insurance Scheme is shadowed by Australia's poor record on disability and jobs. People with Disability President Craig Wallace believes it's time we came up with new ideas to get more people with disabilities into meaningful work.

Pushing the limits
Sarah Barton, Right Now, 20th June 2013

... (We planned) to put people with disabilities on television talking about what matters most to them ... None of (the presenters) had ever been spoken to like that before. No one had ever expected them to get it right and they had never been judged by the same standards as everyone else ... There are still too many voices, viewpoints and ideas that are not being heard and do not have access to expression in our media.

People With Disability Australia: June 2013 E-Bulletin

Down Syndrome NSW Family Picnic Day re-scheduled

Down Syndrome NSW's family picnic, also known as "Richard and Estelle's Big Day Out", has been rescheduled for 28 July, after bad weather cancelling the June event.

Put the date in your diaries now! More details soon.

Digby Webster on exhibition

Great to see Digby Webster's work is on exhibition again, in company with artist Marc Etherington:

Two Painters 
20th June - 12th July 2013
(gallery open Wed - Fri qq am - 5 pm)

DNA Projects

3 Blackfriars Street, Chippendale 2008

You can read more about Digby Webster's art works at Beyond the Square.

Read more about DNA Projects here.

Library Thursday, 20th June 2013

Cerebra is a UK based organisation. They currently have a number of articles likely to be of interest to families of people with Down syndrome. Members can follow this link to find a list of all articles.

These articles may be of interest to families:

Potential stress factors faced by adolescents with Down’s syndrome
Carole Butler, Swansea Metropolitan University
There are many challenges which young people face during adolescence, such as developmental tasks which include identity formation, changes in school from primary to secondary, and physical changes which happen during puberty. Typical stressors that young people face include self-esteem issues, appearance, dating and sexual relationships, personal health, school grades, employment, work and educational plans. To continue reading follow this link.

Self-injurious behaviour in children with intellectual disability

Prof. Chris Oliver, Dr Louise Davies and Dr Caroline Richards
Offers clear and succinct explanations of terms and possible treatment strategies. “Written to help parents and carers of children with an intellectual disability to understand what self-injury is, what the causes are and which interventions are effective. The briefing focuses on children with profound to moderate intellectual disability ... To continue reading follow this link

Writing Slope Innovation

Six year old Lucy improves her reading and writing by using a writing slope…

Call for volunteers: Special Olympics Asia Pacific Games 2013

From Speical Olympics Australia.  The Asia Pacific Games will be held in Newcastle (NSW) in December 2013:

SPREAD THE WORD - Volunteers WANTED for the Special Olympics 2013 Asia Pacific Games - if you know someone please help us promote the online registration link on the website link below - the NEW volunteer uniforms look great!
Everyone is welcome to volunteer, for details and questions visit the website please. Less than six months to go ... volunteer information and registration here

Centre for Disability Research and Policy: seminar schedule

A schedule of seminars for the remainder of 2013 is available from Centre for Disability Research and Policy (University of Sydney) website: 

Monday 24 June 2013  

Social skills training for children with autism: A real world trial.

Monday 8 July 2013
Seminar: Financing disability: new frontiers n social economy

Tuesday 20 August 2013
Roundtable discussion on Adults with Autism (invitation only)

Friday 30 August 2013
Disability and Health: A population health perspective

Wednesday 6 November 2013
Why are we failing disabled young people?

Good news on the NSW Guardianship Tribunal

From NSW Council for Intellectual Disability E-News, June 2013:

NSW CID has been strongly advocating for key features of the Guardianship Tribunal to be kept when it becomes part of the NSW Civil and Administrative Tribunal (NCAT) in 2014.

One issue we were very concerned about was whether existing requirements for the Tribunal to have three members when it hears cases would be kept. We wrote a letter to the Attorney General, Greg Smith SC, strongly arguing for the existing three-member requirement to be kept. 

This was a joint letter with Alzheimer's NSW, the Brain Injury Association NSW and the Mental Health Coordinating Council. 

(NSW CID was) very pleased to receive a letter from the Attorney General assuring us that the existing three-member requirements will stay in place in the Guardianship Division of NCAT. NSW CID applauds the Attorney General for this decision.

Prof Sue Buckley's new blog

Director of Research at Down Syndrome Education International, Prof Sue Buckley has set up a new blog:

I have started this blog to share what I am learning as I engage with so many interesting, informative and dedicated people – parents, researchers, and practitioners (particularly educators, speech and language therapists and early interventionists) as I am privileged to travel and work widely within the Down syndrome community.

Her blog post from 16th June 2013 describes recent teacher training she has been providing in Texas:

Parent power is changing education – keep it up!
... A defining feature of this work in Texas is parents and professionals working openly together. Parents start the process – ask for more for their children and some excellent professionals hear them and help them to make it happen.

Photo request: for future posts on reading

Dr Kathy Cologon, from Macquarie University is generously writing a series of posts for this blog based on her recent work in dispelling myths about how children with Down syndrome learn to

read.

Would you be interested in sharing some photos of children with Down syndrome enjoying reading activities to illustrate her posts?  Please send your offering to blogeditor@dsansw.org.au this week, if possible.

Thanks.

Literacy for children with additional needs: workshop

New workshop from Aspire Early Intervention:

Literacy for children with additional needs
27th July 2013 
10:00 am - 1:00 pm
Wentworth Point

This 3-hour workshop will go into detail about what pre-requisites are necessary for your child to read, and how to encourage your child to read.

... This workshop is beneficial for pre-school teachers but specifically primary school teachers with difficult to teach learners in their class such as children with an ASD, Cerebral Palsy, Speech and Language Impairment and global developmental delay. This is also a good workshop for parents who are hands on with their child’s academic learning and for independent therapists with some experience.

For information about cost and registration email tiffany@aspireearlyintervention.com or call Aspire Early Intervention on 02 9739 9798

Weekend reading and viewing: 15th - 16th June 2013

My Perspectives 2013
Down's Syndrome Association (London), 14th June 2013
Award winners in My Perspectives, a UK photographic competition for photographers who have Down syndrome.

What if ...

Meg Christo, My Imperfect EXTRA Ordinary Life,10th June 2013

What if parents of Carsten’s typical peers requested or even demanded that Carsten be in their child’s class? I have heard parents say things to the opposite effect while attending activities for my oldest son, Gabe, which infuriated me. I would say things back like, “I don’t feel that way. I feel like Child X brings a different set of skills to the classroom, and I am glad she is here.” I haven’t, however, requested that Child X be put in Gabe’s class the next year. Why haven’t I?

“A Doorway to a New Life”: A Conversation with George Estreich About Down Syndrome, Writing, and the Stories that Make a Family
Amy Julia Becker, Thin Places, 12th June, 2013 

An interview with George Estreich’s about writing The Shape of the Eye, making meaning in life, and whether Down syndrome is “bad” or “hard.”

Potential, Disability, and Human Worth

Jsun, Kimchi Latkes, 7th June 2013

So what is potential? Is it a bottle that we fill, predestined to be a certain size at birth? Is it a balloon that stretches and deflates according to our circumstances? What, specifically, are we discussing here? Potential for what? Happiness? Wealth? Influence? Raw ability? What kind of ability?

Love, no matter what, 

Andrew Solomon, Ted Talks, filmed April 2013, posted June 2013 

And I said, "Do you regret it? Do you wish your child didn't have Down syndrome? Do you wish you'd never heard of it?" And interestingly his father said, "Well, for David, our son, I regret it, because for David, it's a difficult way to be in the world, and I'd like to give David an easier life. But I think if we lost everyone with Down syndrome, it would be a catastrophic loss." A discursive talk on identity that touches on people with Down syndrome and their families.

The Simple Humanness of Jude

Green Tea Ginger, 10th June, 2013
I am ... a witness to the everyday humanness of my own child born with Down syndrome. I have often written about how I was devastated when I first learned that Jude had Down syndrome so I won't rehash those feelings. But I do want to emphasize that all those fears involved an inability to see my child as fully human, as worthy, as quite simply part of the humanity in which we all live. Love does not always involve respect, I think, so while I loved her greatly, I struggled, initially, with not seeing her as complete or whole.

A Word Can Be a Matter of Life and Death
Matthew Holder, Huffington Post, 5th March 2013 

... values can be fragile things. Sometimes when we are not paying attention they can be undermined. Sometimes they can be unintentionally compromised by something as simple as a single word.

Family Business: Manchild Coming of Age
Richard Conniff, Strange Behaviors, 10th June, 2013
My Dad died Saturday, age 92. He was a writer and a passionate teacher of the craft and love of writing. I’ll post an obituary later, but this is an article he wrote for the New York Times magazine about my brother Mark, who has Down syndrome, and about raising him at home when institutionalization was the more standard practice.

Dear mom with a prenatal Down syndrome diagnosis 

Lauren, Sipping Lemonade, 12th June 2013

I know how you feel. Except — unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the Neonatologist on staff tell me — only minutes after she was born — that she had Down syndrome. And what that meant. But let me tell you — from one mother to another — those facts are not what it means to have a child with Down syndrome.

Free online magazine: Link

Link Disability Magazine's online June 2013 is now available to download free of charge.

The NSW Smoke Alarm Subsidy Scheme (SASS)

Since hearing impairment is not uncommon in people with Down syndrome, this scheme will be of interest to some NSW readers:

The NSW Smoke Alarm Subsidy Scheme is a joint initiative between the Deaf Society of NSW and Fire and Rescue NSW, made possible with funding from the NSW Department of Family and Community Services; Ageing, Disability and Home Care.

A standard smoke alarm costs around $50, but a smoke alarm with a strobe light, pillow shaker and beeper can cost around $500, which is cost prohibitive for many people. This is why the NSW government established SASS. The scheme will cover the costs of the alarm; however, you must pay a $50 fee with your application.

• Further information about the scheme, eligibility and how to apply is available here, on the Deaf Society of NSW's website

Commitment to real choice and control delayed by the NSW Government: Family Advocacy

Family Advocacy's position statement on news this week that the NSW Government has withdrawn one of the basic promises of Stronger Together 2:

'Stronger Together – The second phase provided a vital commitment. It said:

“Individualised funding arrangements will become available from 2011/12, and by the end of 2013/14, anyone receiving disability services will have the option of using an individualised and portable funding arrangement.” (page 21) 

This provided a target for the reform process. Hundreds if not thousands of people with disability and their families built trust with the NSW government and retained patience with the constraints in their lives waiting for 1 July 2014.

Minister Constance has now withdrawn the Government’s commitment to the 1 July 2014 start date indicating that the time line for the full implementation of the NDIS in NSW will take all the focus of Ageing Disability and Home Care. He reminds people that the NDIS roll out begins in the Hunter this July and will expand to other parts of NSW from July 2016.

This means depending on where you live, you may not get the opportunity to have control over your supports until 2018.'

Read the full statement and Family Advocacy's suggestions for responding to this action, here.

Research news update #4 for 2013

Constructing Futures: survey of parents' aspirations for young adults with intellectual disabilities
An Australian Research Council Linkage Project in partnership with Endeavour Foundation:

You are invited to participate in a survey aimed at increasing our understanding of what parents hope the lives of their young adult with an intellectual disability will be. 

• Click here to take the survey

10 year follow-up on inclusion
Include ... is about helping to build inclusion through staff training, service design support, direct consultancy and service evaluation as well as direct assistance to families and individuals.In 1992 the Disability Discrimination Act was passed which meant that all children with disabilities could attend their local school and classrooms with the necessary supports and changes made to ensure that they could be included. About 10 years ago we surveyed families and schools across Australia asking them to rate how well their STATE was doing on physical, social and curricular inclusion of children with disabilities. 

• This survey is a repeat of that research to see how we have progressed over the last 10 years.

Targeting an aspect of Down syndrome
Science Codex on 5th June, 2013
University of Michigan researchers have determined how a gene that is known to be defective in Down syndrome is regulated and how its dysregulation may lead to neurological defects, providing insights into potential therapeutic approaches to an aspect of the syndrome.

Normally, nerve cells called neurons undergo an intense period of extending and branching of neuronal protrusions around the time of birth. During this period, the neurons produce the proteins of the gene called Down syndrome cell-adhesion molecule, or Dscam, at high levels. After this phase, the growth and the levels of protein taper off.

However, in the brains of patients with Down syndrome, epilepsy and several other neurological disorders, the amount of Dscam remains high. The impact of the elevated Dscam amount on how neurons develop is unknown.

Down syndrome neurons grown from stem cells show signature problems

David Tenenbaum, University of Wisconsin-Madison News, 27th May, 2013
Anita Bhattacharyya, a neuroscientist at the Waisman Center at UW-Madison, reports on brain cells that were grown from skin cells of individuals with Down syndrome. "Even though Down syndrome is very common, it's surprising how little we know about what goes wrong in the brain ... These new cells provide a way to look at early brain development."

Cholesterol Increases Risk of Alzheimer's and Heart Disease 

Science Daily 15th April 2013
Researchers at the Linda Crnic Institute for Down Syndrome and the University of Colorado School of Medicine have found that a single mechanism may underlie the damaging effect of cholesterol on the brain and on blood vessels. Original article available free of charge on PLOS ONE

Small UK study on speech
A small training study – supported by Down Syndrome Education International – suggests that targeted training can improve blending skills.

The significance of aspects of screening for obstructive sleep apnoea in children with Down syndrome
Sleep problems among children with Down syndrome are commonly reported, but under-researched. This study – supported by Down Syndrome Education International – investigated measures of sleep and daytime behavior for children with Down syndrome.

Sleep Apnea and Its Association to Behavior, Learning Problems, and ADHD
In this study of 263 youth, sleep study and neurobehavioral data was collected twice, five years apart. Twenty-one of the children had persistent sleep apnea throughout the entire study. These children were six times more likely to have behavioral problems when compared to children with no sleep issues. Parent-reported behavioral problems were significantly higher for the children with sleep apnea; these observed problems included hyperactivity, attention deficits, aggressiveness, poorer communication, lower social competency, diminished self-care, and compromised adaptive skills.

Correlations of Autistic Behaviors Shown in Children with Down Syndrome
In a continuation of his research looking at children with a co-diagnosis of both autism spectrum disorder (ASD) and other well-known genetic disorders, Dr. Walter E. Kaufmann and colleagues recently published a study that examined the difference in brain structure between children with either Down syndrome alone and children with both Down syndrome and ASD. Dr. Kaufmann and his research team at the Center for Genetic Disorders of Cognition and Behavior (GCB Center) at the Kennedy Krieger Institute believe this will provide more clues to the cause of autism, and lead to better diagnosis and care of children with both Down syndrome and ASD.

Down Syndrome Research and Treatment's webinars  

... an ongoing series of webinars — web-based audio and slide presentations — with noted cognition researchers. (DSRTF) believes these sessions offer unprecedented access to the scientists who are actively advancing the field.

To listen to past presentations, click on the link. You'll be taken to a new window, where you can play back or download the session

Australian Law Reform Inquiry into how to reduce legal barriers to people with disabilities announced

On 7 June 2013, the Attorney-General announced a public consultation on the draft terms of reference for an Australian Law Reform Commission (ALRC) inquiry into equal recognition before the law and legal capacity for people with disability. 

The deadline for submissions is by close of business on 28 June 2013.

This inquiry will consider: Commonwealth laws and legal frameworks that deny or diminish the rights of people with disability to make their own decisions, and act on their own behalf, and what, if any, changes could be made.  Graeme Innes, Australian Disability Discrimination Commissioner

• Further information on the inquiry and how to make a submission is on the Attorney-General's website, here. 

Fundraising event for people with Down syndrome in the Hunter region

Weekend reading and viewing 8th - 9th June 2013

The Cynic v The Anxious Wreck: a war storyLeticia, Embracing Wade, 16th May 2013
From the day Wade was born, I have been waging an internal war about how to manage the competing feelings of wanting to do the best for him, yet not wanting to get sucked in to the heaving pile of guilt-laden extra “stuff” that society makes you feel utterly compelled to do for your child, whether they need it or not. Cutest blog banner photo on the web!

When the perfect baby you adore suddenly becomes a stranger: One mother describes how she fell into a black hole when her son was diagnosed with Down's Syndrome

Faith Bleasedale, Daily Mail online (UK), 31st May 2013
You would think it’s something that you — not to mention the midwives — would notice immediately. But it was two months before I was given the news that changed everything.

Is Down syndrome already starting to disappear?
Mark Leach, Down Syndrome Prenatal Testing, 30th May 2013
Since the dawn of prenatal testing and selective abortion, critics and commentators have wondered whether Down syndrome will disappear from society. Experience this year suggests that it may now be happening.

Leaving Loyalist (College) - an online graduation address
Dave Hingsburger, Rolling Around in My Head, 6th June 2013
I am impressed, first of all, that you have chosen the career you have chosen (disability support)- you will be told, over and over again, by those who don't know any better, that there must be something special about you, that you must be so kind, and so patient, and so special because you do what you do. Be wary of these compliments because they aren't complements at all - they are excuses for exclusion ...

The Global Plight of Disabled Children
The Editorial Board, New York Times Sunday Review, 1st June 2013
A United Nations report, The State of the World’s Children, underscores the moral bankruptcy of Senate Republicans who blocked ratification of a treaty to help disabled people around the world.

Talk - Down Syndrome: series of posts on childhood apraxia of speech
Jennifer Bekins, Talk - Down Syndrome, starting 3rd June 2013
The first two posts in this series were posted on 3rd and 5th June.

Draft Proposed National Framework for Reducing the Use of Restrictive Practices in the Disability Service Sector

Notification from Department of Families, Housing, Community Services and Indigenous Affairs, Disability and Carers' group:

On 3 May 2013, Standing Council on Community and Disability Services Ministers considered a draft proposed National Framework for Reducing the Use of Restrictive Practices in the Disability Service Sector (the proposed National Framework). The proposed National Framework was developed jointly by the Commonwealth, State and Territory Governments and based on consultation to date from non‑government stakeholders.

An initial targeted consultation on the proposed National Framework for Reducing the Use of Restrictive Practices in the Disability Service Sector was undertaken in April 2013 and that process confirmed the need for a wider period of consultation to be facilitated.

The proposed National Framework outlines key principles to guide work in this area and core strategies to be implemented to reduce the use of restrictive practices in the disability service sector.

This consultation process is open to all, it seeks comments from people with disability, their families and carers, disability and carer organisations, advocacy groups, service providers, human rights organisations, medical and allied health professionals, and anyone else concerned with this issue.

It is intended that the proposed National Framework will guide government activity and future policy initiatives in this important area into the future.

The deadline for feedback is Friday 28 June 2013. Feedback is sought in the attached template, or if another format is used, please use headings to identify the sections being referred to. Feedback and enquiries should be directed to disabilitypolicy@fahcsia.gov.au or via mail to:

Disability Policy Section
Disability and Carers Group (National Office TOP DE2)
Department of Families, Housing, Community Services and Indigenous Affairs
PO Box 7576
Canberra Business Centre
Canberra ACT 2610

• The linked documents and other formats are available from the FaHCSIA website, here.

News and commentary on how the NDIS will work at the front lines (2)

Geelong picked as home for headquarters of national disability insurance scheme DisabilityCare
ABC News online, 3rd June 2013
Less than a fortnight after Ford announced it was closing its Geelong manufacturing plant, the regional Victorian city has been chosen as the headquarters of the new DisabilityCare agency.

Committee to oversee NDIS rollout
news.com, 4th June 2013
The House of Representatives on Tuesday agreed to set up a joint select committee to inquire into and report on the implementation of Labor's DisabilityCare Australia.

Rural people want flexibility in disability scheme
Amy McCosker, ABC Rural, 24th May 2013
People with a disability in regional Australia and their carers say they hope the National Disability Insurance Scheme brings more flexibility to support facilities in their area.

A landmark Reform to Improve Lives
Jenny Macklin, Chifley Research Centre, 27th May 2013
As the Parliament prepared to pass laws allowing for an increase to the Medicare Levy to help fund DisabilityCare Australia, the Prime Minister reminded the nation what a significant transformation was under way. The Prime Minister’s emotion as she spoke in the House was easily understood.

Disability Care for Beginners - Revolutions with Jon Faine
774 ABC local radio Melbourne, 29th May 2013
All parties agree that Australia needs national disability care. But what will it do? How will it work? Who will get what? And who won't? Jon Faine and guests discuss The National Disability Insurance Scheme and its implications. Audio download.

DisabilityCare name 'patronising': Coalition
Dan Harrison, The Age, 3rd June, 2013
... Opposition disabilities spokesman Mitch Fifield suggested that the name should be reconsidered before the advertising started. Senator Fifield said that the name was "close to being hated" by people with disabilities.

Roll out of DisabilityCare Australia

DisabilityCare Australia website
DisabilityCare Australia is the national disability insurance scheme. We are introducing the scheme in stages from July 2013. This is because it’s a big change, and we want to get it right and make it sustainable.

From 1 July 2013, DisabilityCare Australia begins in Tasmania for youth aged 15-24, in South Australia for children aged 0-14, and in the Barwon area of Victoria and the Hunter area in NSW for people up to age 65. From 1 July 2014, DisabilityCare Australia will commence in the ACT, and the Barkly region of Northern Territory. Roll out of the full scheme will commence progressively from July 2016.

Service, Support and Success: Direct Support Worker Newsletter

Vita Community Living Services in Toronto, Canada publishes the Service, Support and Success: the Direct Support Worker Newsletter, a monthly publication aimed at providing practical information / suggestions for direct support workers who work with people with intellectual disabilities (they have a lot of family subscribers as well). It is available online, or by email.

Readers of this blog and other Down Syndrome NSW publications will be familiar with the quality of the writing, thinking and advocacy of  Dave Hingsburger, who edits Service, Support and Success, with Angie Nethercott.

The latest issue is Volume 2: Issue 6:

Well worth the (free) subscription if you work with or are interested in supporting people with intellectual disability.

Fundraiser for DS NSW

CDS anti-bullying project

Numicon workshops: July, Rooty Hill

Numicon - A multi-sensory approach to arithmetic teaching that uses patterns that are structured to encourage the understanding of number and number relationships. (Down Syndrome Education International)

Oxford University Press Australia is advertising professional development training in Numicon, a method of teaching maths, in Sydney on 29th July. Two sessions are scheduled at the same venue:

Introduction to the Numicon Approach: Transform the way students understand mathematics 

This session is a full-day session for educators and leaders of students from K-3 and those students experiencing difficulties with mathematics.

Introduction to the Numicon Approach: Transform the way children see numberThis 2-hour will focus on the Introduction of the play-based Numicon approach in the pre-school and childcare setting.

Monday, 29 July 2013 

Rooty Hill, NSW 2776

Registration closes Monday, 22 July

• Full details and registration links are available from the OUP Australia and New Zealand website
  
• Information about Numicon from Oxford University Press Australia and New Zealand

Information about the effectiveness using Numicon to teach maths to children with Down syndrome is available from Down Syndrome Education International:

Tony Wing and Romey Tacon, Teaching number skills and concepts with Numicon materials. Down Syndrome Research and Practice. 2007;12(1);22-26.

Joanna Nye, Sue Buckley and Gillian Bird, Evaluating the Numicon system as a tool for teaching number skills to children with Down syndrome, Down Syndrome News and Update, 2005; 5(1), 2-13

For further information from the Down Syndrome Education International website, just enter 'Numicon' into the search box.

Additional federal funding announced for students with disability in special schools

Media release from Prime Minister, Minister for School Education, Parliamentary Secretary for School Education
Monday 3rd June 2013

$76 million will be available to help more than 350 government and non-government special schools across the country over the next six years as part of the National Plan for School Improvement.

This funding will be over and above the additional resourcing that many special schools will already be eligible to receive as part of the new needs-based school funding arrangements being progressed by the Gillard Government.

The Review of Funding for Schooling recognised the high resourcing demands in all special schools and this extra investment will assist the more than 25,000 children with multiple and complex disability in the special school environment.

This extra help will ensure that students with disability attending special schools, their teachers and parents will receive the support they need to address these complex needs.

.... read the full media release here, 

Apraxia series on Talk-Down Syndrome

Speech and language pathologist Jennifer Bekins's excellent blog Talk-Down Syndrome focuses specifically on speech, language and communication in people with Down syndrome. Today she has published the first in a series of posts on apraxia of speech and children with Down syndrome:

... (a) series to explain what apraxia is (and isn’t) my hope is two-fold:

• My readers will understand apraxia and how it presents in children with Down syndrome
• Any negative emotions related to the term are relived and replaced with new perspective

... read on at Talk-Down Syndrome

Supported Living Fund Round 3 - applications opening 24th June 2013

Down Syndrome NSW will be holding member workshops on the Supported Living Fund in the coming months prior to the closing date for applications. The following information has just been released by NSW Family and Community Services (Ageing, Disability and Home Care):

The Supported Living Fund - Round 3

Round 3 (final round) of the Supported Living Fund (SLF) will be open for applications between Monday 24 June and Friday 30 August 2013.

Please read the important information below. This will help you notify and support individuals, families, carers, and staff in your organisation and networks to understand and work through the SLF application process.

100 SLF packages in 2013/14
100 packages will be allocated for Round 3 of the SLF. All applicants will be notified about the outcome by October 2013.

Timelines for SLF Round 3 intake process

• Click here for a timeline diagram.

Application process
As with all previous rounds, the SLF Proposal (My Proposal) is the only official application form for Round 3. Regional SLF Assessment Panels will use the information contained in Proposal Forms to assess and prioritise all SLF applicants. No other correspondence or supporting documentation will be taken into account and should not be submitted.

ADHC will be accepting applications from new applicants and people who were unsuccessful in their application for the Supported Living Fund in Round 1 and 2.

Electronic and printed versions of the My Proposal form can be accessed from the ADHC website here.

Applicants are encouraged to read all the SLF information which is available on the ADHC website at the link above. This will help them decide if the SLF is right for them and if they are interested in applying for SLF funding.

Should applicants have questions about completing the Proposal Form, they can contact Carers NSW on 1800 242 636 during the application period.

Closing date – Friday 30 August 2013

Round 3 Proposals will be accepted until:
5pm Friday 30 August 2013 for printed forms (postal submission), and
midnight 30 August 2013 for electronic forms (email submission).
Please see Proposal Form for detailed instructions. Applications will NOT be accepted by fax.

Carers NSW SLF information sessions – July/August 2013
The roll out of Supported Living Fund packages will again be complemented by information sessions for people with disability, their families and carers, as well as interested service providers, between July and August 2013. 

Carers NSW will deliver the information sessions and a flyer will be distributed via the service provider portal and will also be available on the ADHC website.

While these workshops are not compulsory, we encourage people with disability, their families and carers to attend where possible to learn more about the fund and how to apply.

SLF Rounds 1 and 2 unsuccessful applicants
All previous unsuccessful applicants will have the option to reapply by completing and submitting a Round 3 My Proposal form.

Previous applications will not be considered.

SLF service provider list
A list of approved SLF intermediary service providers (fund holders) is available on the ADHC website link above.

SLF Guidelines and fact sheets
SLF Guidelines and key policy documents, including fact sheets with specific examples of SLF policy areas are updated and added to regularly.

These will benefit new applicants, current SLF recipients and support workers, and are currently available on the ADHC website link above.

* * * * * * * * * * * * 

Reminder: Family Advocacy has a webinar on the concept of Supported Living scheduled for Friday 14th June 2013 - details here.

Visit the Family Advocacy website for further resources on supported living.

'Independence: Theirs and Ours': presentations and links

Presentations and links from the recent  Independence: Theirs and Ours  event hosted by Down Syndrome NSW:

Speakers

• Patricia Mckenzie

• Elizabeth Corbould

• Evelyn Scott

Links

• The Independent Living Skills Initiative program

• The Supported Living Fund, Round 3 (2013)

• NSW Ageing Disability and Home Care - Regional Areas and Contacts

• ADHC Support Planners

• Telstra GPS Tracking

• Wall mounted Key Safe

• Apple iPad

The presentations were filmed, and will be available for members to view online shortly. 

A further Independence: Theirs and Ours event is scheduled for the Central Coast/ Hunter region - date and venue to be confirmed.

• For any further information please contact Miriam Parker at Down Syndrome NSW, via miriam@dsansw.org.au or on 02 9841 4407

Weekend reading and viewing: 1st - 2nd June 2013

We can do it! 
Tyler Faith Feder, Roaring Softly, March 2013
Happy International Women’s Day, everyone!  A fabulous image of a diverse and inclusive collection of women.

Can you assist us and each other?
Brian Chicoine, Adult Down Syndrome Clinic, 30th May 2013
... I would like to explore is having you help update or write patient education material.We will post information about a topic and ask you to share additional ideas and we will write patient education material with your assistance.How about if we start with dry skin. Below is some information we share. How can we improve it?

Changing attitudes and shifting perceptions

Caroline White at TEDxKingsCollegeLondon, posted 22nd May 2013
Caroline's passion is to raise awareness of (Down syndrome) and help to shift outdated perceptions surrounding disability whilst championing inclusion and making 'different' normal. Caroline's talk shows her transformation from fear of her child suffering from Down's Syndrome to acceptance to finally show us the power of difference.

Brennan Goes to Camp
Margaret Froehlke, Down Syndrome-Autism Connection, 30th May 2013
Brennan has Down syndrome and Autism Spectrum Disorder (ASD). He finally received the diagnosis of ASD when he was six years old. Up until then, we had no idea why his “Down syndrome” was so different from all the other kids we had met through the special education programs, and we could not understand why he had so many transition, sensory, social, and communication issues. It might seem sad to some parents to learn that their child has an additional diagnosis, but not for us...we were relieved! It helped us, and his educational team, to finally understand how we could work with the ASD to help reach him!

The world lies upward
Kelle Hampton, Enjoying the Small Things, 29th May 2013

... Twenty-nine years ahead of us on this journey, her voice oozes with the same love I feel for my own kids except there's more--years of stories, struggles, victories, experience. You can hear it behind her words, you can feel it in her voice ...  we hang on to those powerful words of Helen Keller: "...my world lies upward, the length and the breadth and the sweep of the heavens are mine."

Let’s talk about sex, babyKimchi Latkes (blog), 23rd May 2013
...I want him to experience his own sexuality. He may grow up with an intellectual disability, but I don’t see how that precludes him from partaking in the universal human experience. Love and sexuality are a huge part of that human experience.

Escape from labels. be free, be different: Sarah Gordy at TEDxYouth@HackneyMichelle Rossi (producer), 2nd April 2013

A professional actor with over 10 years experience in TV, theatre, radio and film - recent TV credits include 'Upstairs Downstairs' (Series 1 & 2), Doctors and Holby City. Sarah is also a Trustee of The Oyster Project a charity led and run by disabled people. She has Down syndrome but does not believe labels should define or limit what you can achieve. Currently, with the support of Arts Council funding, Sarah is co-producing and co-directing Oyster's first play with a professional creative team and Oyster members on stage.

School said 'hi' — special needs student took it from there
Vikki Ortiz Healy, Chicago Tribune, May 25, 2013
A few months before Ryan Burke became the first student with Down syndrome to attend Notre Dame College Prep in Niles, his father made an emotional plea to his son's classmates.

"All we ask is that you say 'hi' to him. Just give him a chance," Kevin Burke recalled saying at a school assembly. "He'll take it from there."

How not to say the wrong thing,
Susan Silk and Barry Goldman, Los Angeles Times (op-ed), April 7, 2013
Susan has ... developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.
Not about Down syndrome, not about disability, but applicable - you'll get it.