Weekend reading and viewing 21st - 22nd July

Living a good life isn't just about a job, Craig Wallace, Ramp Up, 16th July 2012

Asking others to be there ~ creating a place for support and friendship to grow, Margaret Rogers,   Communique, July 2012, pp 21-22, published by Family Advocacy (originally published in Thinking About,  Belonging Matters, Victoria, 2011)


This girl has special needs, and one day dreams of being a mum.  Does anyone have the right to stop her having a baby? Marie Claire magazine June 2012, and Women with Disabilities Australia.


Long Shots, Open Books Open Doors (blog), 16th July 2012. A 21 year old woman with Down syndrome who emerged from school unable to read, begins to learn.

The Doctors' Waiting Room, or, The Value of Our Daughter's Life, Down Side Up blog (UK), 18th July 2012


Tom, Conny Wenk News blog 19th July 2012. A beautiful family photo shoot with Tom (3) and his parents. Conny Wenk often features people with Down syndrome in her Lifestyle Photography.  

Partners in Policymaking: Altogether Better, In Control UK . Overview to PIP suite of leadership training leadership training courses for disabled adults, parents and  carers of disabled children, professionals and other service providers working in education, health and leisure.

Angerwise: Centre for Disability Studies workshop

Do you get angry? Do others get angry at you?

Anger is a powerful human emotion that is often experienced in daily life and it can be very upsetting. Anger can be helpful or harmful. When not resolved well, anger can result in aggressive behaviour, bitterness and resentment, and it can be stored up over time and seriously affect health, relationships and quality of life.

AngerWise: A problem solving approach to handling anger wisely - introduces participants to key information, tools and resources to better understand, control and handle anger wisely.

The workshop is open to carers, service providers and people with intellectual disabilities.

Presenter: Assoc Prof Vivenne Riches

Tuesday 28th August 2012
9.30 am - 4 pm
Cost: $200 + GST

Centre for Disability Studies, University of Sydney
Medical Foundation Building 
92-94 Parramatta Road |
Camperdown 


Enquiries and registration form: CDS ph 02 9036 3600 email: margaret.carrick@sydney.edu.au

Take a picture ...

Great tip from a US sheriff's office, sensible with all children, but particularly with those inclined to wander ... some of you might already do this:

Before leaving home with children and/or grandchildren for a large event, take out your mobile phone and take a photo of each child individually. That way, if the unthinkable happens and a child gets lost, you have picture with you of how they are dressed and how they look that day.

Sydney Catholic Schools: Assistive & Inclusive Technology Information Line

Sydney Catholic Schools are offering a new support service to its students with diverse learning needs, particularly those with disabilities and learning difficulties, as well as their parents and teachers.


The Assistive & Inclusive Technology Infoline is operated by allied health professionals and specialist teachers.


This new service is available during School Terms on Tuesdays, Wednesday & Thursdays from 3.30 pm - 7.00 pm on 02 9569 9155

A message from the NSW Minister for Disability Services

New on the ADHC website: 

Watch a video message from the Minister for Ageing and Minister for Disability Services Andrew Constance. Mr Constance welcomes ADHC's new Chief Executive (Jim Longley), farewells Deputy-Director General  Ethel McAlpine, and discusses disability and ageing reforms in NSW. A transcript is provided.

New research report on the effects of memantine on cognition

The New York Times magazine today revisits and updates its report on Dr Alberto Costa's research on the effects of the drug memantine on cognition in people with Down syndrome, with the publication of his clinical study on a group of 40 young adults with Down syndrome.   Can a Pill Make People With Down Syndrome Smarter? follows a NYT interview with Dr Costa, published just on a year ago, about his work in the field over 15 years. The new study does not provide definitive evidence of cognitive improvement, but does encourage researchers in the pursuit of further research into memantine.

Original article citation: 

Translational Psychiatry (2012) 2, e141; doi:10.1038/tp.2012.66

Published online 17 July 2012

Antagonism of NMDA receptors as a potential treatment for Down syndrome: a pilot randomized controlled trial, R Boada, C Hutaff-Lee, A Schrader, D Weitzenkamp, T A Benke, E J Goldson and A C S Costa

Delineate arts grant applications open

Accessible Arts, in partnership with Ageing, Disability and Home Care (ADHC), is inviting applications for Delineate 2012 to boost and foster arts and disability practice within NSW.

This year, Delineate will award six successful recipients $3500 each to support an arts project to be developed throughout the Don't DIS my ABILITY campaign.

In 2012 applicants can apply from anywhere in the ADHC regions and Local Planning Areas.

Delineate is open to

• Disability services coordinating quality arts programs
• Service providers working with people with disability in the arts
• Individual artists with disability

and Applicants must be a NSW resident

The Delineate program also offers a one-day, professional development forum led by Accessible Arts at Walsh Bay.

Applications opened yesterday and will close on 27th August 2012

Further information from Accessible Arts here.

Research opportunity: asthma and intellectual disability

The University of Sydney  (Pharmacy Faculty) is conducting research into the use of inhalers by people with an intellectual disability. 


Australian data show that 15% of people with intellectual disability have asthma, and our recent study showed that inhalers are being prescribed. In both residential care settings and the family home, assistance is often provided to people with intellectual disability to take medication.

We are seeking to interview family caregivers and disability support workers who have recently cared for a person with intellectual disabilities who has asthma or uses inhalers. We hope to gain an understanding of carers’ knowledge and training with regard to respiratory medications, as well as any challenges involved.

Please contact Sharon Davis (Ph D candidate, Faculty of Pharmacy) on 02 9114 5119 or 0411 817 299 for more information.

It Takes Two To Talk: expressions of interest, Central Coast

Expressions of interest are sought for  an ‘It Takes Two To Talk’ program in 2012 – 2013.

Corinna Hassett, a Hanen certified speech pathologist registered with Better Start FaHCSIA funding and parent of a teenager with Down syndrome, is looking to run a Hanen Parent Training Course using the ‘It Takes Two to Talk’ program in the Central Coast area.

The cost for attending 8 group parent training sessions plus 3-4 video feedback sessions is $1500. Will consider individual families if the need arises. Will look at venues on the Peninsula, at Niagara Park and Wyong areas depending on demand.

If you are interested please contact Corina Hassett on 0409 923 814 or email hassett5@optusnet.com.au 

Source: Down Syndrome NSW eUpdate July 2012

Softball NSW competition 2012

For registration form or more information, 

email Cathy Kerr: genmanager@softball.net.au

or phone 02 9677 4000 during business hours.

Snow!

Dominic is just back from a skiing holiday at Perisher. He had lessons through Disabled Winter Sport Australia, where you pay a membership fee and then receive discounts for all your lesson -  good value as it is a private lesson and even with your membership cost included, it costs less than getting a standard private lesson. 

Bill Saugez (of Jindabyne and California), Dominic's instructor, had him being 007 and going on missions to encourage him and it worked well. Bill has enormous amounts of patience and empathy and enjoyed
Dominic's company so it was very successful. 

Dominic and his mother were both very impressed with Disabled Winter Sports, and with his instructor.


Click here to learn more about Disabled Winter Sport Australia, and the Adaptive Snowsports Festival – August 2012 (registrations now open).


What have you been up to this winter holidays?

Weekend reading and viewing 14th - 15th July 2012

Oscar Pistorius and South Africa's giant strides, Simon Barnes, The Australian 7th July, 2012 (originally published in The Times)

New forms of disability activism: who on earth are the Bolshy Divas? Karen Soldatic and Terence Love, on Ramp Up, 11th July 2012  (The Boshy Divas are anonymous, but one we know that at least one Diva is the mother of a young person with Down syndrome).

Redefining Synonyms: Submit and Comply, Joan Medlen, Practical Wisdom blog, 2nd July 2012

Don't look past my disabled body - love it, Stella Young, Sydney Morning Herald, 13th Juy 2012

Video of interview with Grabovac family - shown at Richard Wilkins gala on 16th June. Richard Wilkins interviews Mandy and Ante Grabovac, parents of eight year old triplets, including Adam, who has Down syndrome.

In case you missed it earlier in the week, you can watch Let the Journey Begin for free online here (45 minutes).

Photos from Penny Green's Olympic Torch run on Monday 9th July, in Dunstable, Beds, UK, raising awareness about people with Down syndrome are here.

Creating a Home and Life where I can Thrive: Michael Kendrick for Family Advocacy

Newcastle – Ryde – Hurstville – Wollongong

August 21 – August 22 – August 23 – August 24

Creating a Home and Life where I can Thrive is a one day workshop for families and for people who provide support for a person with disability in the context of their home and community life.

Michael will draw on his many years experience consulting and advising families, advocates, governments and community groups who are pursuing a full and meaningful life for people with disability within their communities.

The registration form is part of the flier.

Enquiries:  Family Advocacy 02 9869 0866 or 1800 620 588 (NSW non metro callers) or by email at workshops@family-advocacy.com

Library Thursday: DSEI e-books

Down Syndrome Education International has just released 12 titles from its highly regarded classic series Down Syndrome: Issues and Information as e-books, through its education store, making them easier to access, on more devices. More are to come.

Titles now available include the series introduction, Living with Down syndrome, and titles on speech and language development, memory development, reading and writing and number skills development for various age groups.


Click here to see the titles now available, and to order and download.

Drama: performance (Wagga Wagga) and classes (Rozelle)

Performance: “Off with Their Heads: Alice and the Queen of Hearts” 

25 and 26 Jul 2012 

All Abilities Theatre Company, Civic Theatre, Wagga Wagga  


Details and contacts


* * * * * * * * * * 

Classes: Rozelle Neighbourhood Centre

19 July to 6 September  

Weekly drama sessions for children with disability, led by tutors from Drama Scene Players and assisted by an Ever After Theatre ensemble member.

Details and contacts

Down Syndrome NSW: new website

Over many months, the Down Syndrome NSW website has been revised, refined, updated and improved, and it has been relaunched today.

The new web address is www.downsyndromensw.org.au, but the old address will redirect you there too.

Please have a look around the new site, to see what is new, and where things are located - we hope you like it.

Staff email addresses will remain the same (and they are, of course, listed on the new site).

Our thanks to all who have contributed to this major task, and to the developers, Fat Beehive, who specialise in web services for not-for-profit organisations.

Let the journey begin: video online

At Parliament House in Sydney on July 3, 2012 the Minister Andrew Constance formally launched the documentary Let the Journey Begin. The film explores the lives of three individuals and their families as they progress through the Independent Living Support Initiative (ILSI) program over the course of nine months. 

ILSI is an innovative program designed and developed by Down Syndrome NSW, in conjunction with service providers and NSW Ageing Disability and Home Care, to help people living with a disability live a more independent life. Throughout the documentary we watch Sophie, Jane and Leigh gain valuable living skills, set goals, dream big and gain more confidence.


The documentary is designed to show facilitators and potential participants and their families what to expect if they choose to enter into a transitional program such as the ILSI.

Watch Let the Journey Begin for free online here.

Illawarra Disability Options Expo: 8th August

This year marks the 20th annual Illawarra Disability Options (IDO) Expo - an invaluable resource for people of the Illawarra.

IDO is a professional network of key disability providers whose vision is to improve options for people with a disability.

The Expo provides a 'one-stop-shop' for the community, and the chance to speak with representatives of various services, including information on education, employment, respite, transport, advocacy and much more.

Illawarra Master Builders Club, Church Street, Wollongong

8th August 2012, 10:30 am to 1:00 pm

Contact: Merryl Bennet on (02) 4229 1922 or Annick Leach on (02) 4227 3111

New: Dance classes in Murwillumbah

Source: Accessible Arts on Facebook.

Want to make the sure the NDIS works for you?

From the Every Australian Counts campaign:

Have your say with the National Disability and Carer Alliance

An important message from Kirsten Deane from the National Disability and Carer Alliance about a forthcoming consultation on the design of the NDIS.

"The National Disability and Carer Alliance wants to hear from you. If you are a person with a disability, a family member, work with people with a disability or are a service provider we want to hear what you think. We want to hear how you want the National Disability Insurance Scheme (NDIS) to look and to work. We want to know how it should work on the ground to best meet your needs ...

... It is true to say that at the moment there is a fair degree of “consultation exhaustion”.  People in the disability sector feel endlessly consulted – so it is understandable that people feel daunted or exhausted by process of having to fire up again. But from beginning of the campaign people with a disability and their families and carers have rightly argued that their lived experience must be central to the design and implementation process. This project is one mechanism to make sure that happens. The Alliance is therefore anxious to ensure that as many people as possible have the opportunity to participate. So we look forward to seeing many of you at the forums."

Read the full announcement here.

Colour my life exhibition: Glebe

Colour My Life: a celebration in colour, a group mixed media exhibition of 20 artists from Boonah Creative Arts Centre, an initiative of Centacare Broken Bay


Gallery Red
Shop 11,131-145 Glebe Point Road, Glebe


13 - 31st July 2012

Details via Accessible Arts or Gallery Red

Olympic Torch Relay: Down syndrome awareness stage

For those following Penny Green (Director of Down's Heart Group, UK) and her campaign to raise awareness about people with Down syndrome during her run in the Olympic Torch replay, a reminder that it is scheduled for Monday 9th July, at about 8.07 am (BST) through Dunstable - that is about 5 pm Monday 9th Australian Eastern time.

The BBC's torch relay live stream and map is here.  Penny's nomination story (to carry the torch) is here.

Weekend reading and viewing 7th-8th July

Review of 'When David was surprised, John Valeri, Hartford Books Examiner


People with Down syndrome can be jerks too, Kate Conway remembering her aunt in an earthy post (there is a little strong language), reminds us that people with Down syndrome are just ... people!


Why using the word 'retard' is retarding progress, Tim O'Donoghue - a 19 year old college student compares his high school experience with his younger brother's.

In disability services, 'profit' is still a dirty word, Graham Bennett - an opinion piece on Ramp Up.

The actors in this Judith Thompson play are rare, article about a play staged in the current Toronto Fringe Festival, Globe and Mail.

Four short online videos, making up a series on Down syndrome broadcast last week on Boston TV program Chronicle, recommended by the Boston Children's Hospital Down Syndrome Program (who participated in the program):

Part I: One family's decision 

Part 2: Easier Down syndrome test

Part 3: Determination trumps Down syndrome  

Part 4: Down syndrome equal treatment 

NDSC Convention in Washington DC - live streaming and online recordings

The program for the (US) National Down Syndrome Congress's 40th annual convention, to be held this month in Washington, is replete with sessions and speakers that will attract more than 2000 delegates. 


While it would be a wonderful experience to attend in person, most of us in Australia will not have that opportunity, but the wonders of the internet will now give us online access to a selection from the program, either live-streamed (if the time-zones work for us) or as recordings available to access  until 1 June 2013.  


We have checked out the online registration/payment process for users from Australia, and it worked first time.


Here's how to register and pay online, from the NDSC Convention website:


NDSC Live Stream/Recorded Video Registration


For the first time in Convention history, NDSC is live streaming 17 workshops and sessions from the Annual Convention in Washington, D.C. July 20-22, 2012. Share the experience of “the world’s largest family reunion” and learn the latest developments and advancements from the Down syndrome community’s leading voices.


Unlimited access to select workshops is available during the Convention and until June 1, 2013.
To view a complete list of Convention programs scheduled for broadcast and recording click here.


Cost:
NDSC Member - $35 (membership will be verified)
Non-NDSC Member - $70 (this includes one year NDSC membership)


Click here for the Convention web page to begin the registration process to access live-streaming and/or online recording.

The Other Film Festival: September, Melbourne

Planning a spring visit to Melbourne, or looking for a film festival addressing disability? Here's a way to combine both, hosted by Arts Access Australia:





The 2012 Other Film Festival will be held from the 19^th-23^rd September 
at Arts House, North Melbourne Town Hall


... Loaded with a potent reputation for presenting razor-sharp cinema from around the globe, the festival shifts up a cog in 2012. Experience the acceleration only cinema can deliver as North Melbourne Town Hall becomes the spinning hub for an inclusive and accessible five-day road trip into disability screen culture ...


...The Other Film Festival offers something for everyone with a full program of authentic and compelling films that explores the diverse experiences of disability ...


... The Other Film Festival is Australia’s only disability film festival.


You can subscribe to a mailing list, follow the development of program details and other news via the OFF website, and/or Facebook page.

Library Thursday: online reading, new books coming out in 2012, favourites

Online reading
Accessible Arts Newsletter, issue 3 2012


How David Met Sarah is free to download as an e-book from 4th - 8th July (US; 5th - 9th in Australia) 


Review of 'When David was surprised, John Valeri, Hartford Books Examiner (added 7/7/2012)

New books from Woodbine House
When Down Syndrome and Autism Intersect 
... offers a thorough examination of the unique profile of a Down Syndrome-Autism Spectrum Disorder (DS-ASD) diagnosis and best practices for screening, treatment, and caretaking through the lifespan. This one-stop resource, the first of its kind, will greatly benefit families whose child is already diagnosed, and also those who suspect something more than Down syndrome. (Publisher's note)
Expected release date: November 2012


Try Reading Again
Do you know a struggling reader who has given up trying? Try reading again! This book can help turn older beginning readers into first-time readers or significantly improve their reading abilities. (Publisher's note)
Expected release date: August 2012

The Boys' Guide to Growing Up 

... gives boys with intellectual disabilities the facts they need to navigate puberty.Written at a third-grade reading level for boys aged 9-16 with Down syndrome, autism, cerebral palsy, mental retardation, fragile X, or other special needs, this book is the companion to The Girls' Guide to Growing Up (2011), also by Terri Cowenhoven.

Expected release date: September 2012

Online orders to Australian addresses are not accepted directly by Woodbine House, but their books are readily available to Australian buyers.  Compare prices and availability at Silvereye Educational Publications, The Book Depository, fishpond.com.au, or Fox Educational Resources (this website is currently under reconstruction, but an email address is available), and you might be able to pre-order


Favourite books
Which books have been favourites of your sons and daughters with Down syndrome? Not the ones you liked for them, but the ones they really loved. We'd like to compile a list of those loved by people of all ages.  Send us a note to blogeditor@dsansw.org.au and tell us what the most loved features are, and we'll share them here as they come in.

Here is a starter - both of our children loved David Legge's Bamboozled (Scholastic) for many years - there is not much of a plot, but there is so much to talk about and laugh at, so much utter silliness in every picture that it provides hours and hours of entertainment and language learning and practice (if you can stop giggling). We still keep a copy on the shelves, and they are 26 and 21.

Recent news on funded services in NSW

NSW Ageing, Disability and Home Care has recently announced : 

• the official opening of a new home to build independence for people with a disability in Goulburn
• significantly increased funding for Monaro Early Intervention Service (MEIS)
• the official opening of new accommodation in Sydney's south for young people leaving care
• over $1 million in the 2012-13 NSW Budget to expand and improve supported accommodation in Albury

Food preparation/cooking classes at Chatswood

Exceptional Parents Australia is a local group (in northern Sydney-Chatswood area) of parents of young adults with a disability. 


They are starting food preparation /cooking classes to be held at Chatswood in a purpose built kitchen, run by professional teachers. Cost should only be the ingredients. 


Numbers are needed to start ... anyone interested can post a message on Exceptional Parents Facebook page or contact Louise Gaegan at Willoughby City Council, ph 9777 1000 or Louise.Geaghan@willoughby.nsw.gov.au

Image: © Petar Vician | Dreamstime.com

Recap of events for July

NSW CID consultation, Having your say: 7th July, Blacktown


Carers. Award nomination close 13th July


The Power of Roles: 18th July, Hornsby


The Challenges of Social Inclusion: 19th July, West Ryde


National Disability Awards nominations close 20th July


Colour my life exhibition, Glebe 13 - 31st July


Education and Down Syndrome: Translating Neurodevelopmental and Neuroscientific Findings to Practice: 23rd July, online from Boston Children's Hospital


Reading at home with your child: 30th July, Penshurst

The Challenges of Social Inclusion: CDS workshop with Darcy Elks

The Centre for Disability Studies 

The Challenges of Social Inclusion: a One-Day Workshop 

presented by Darcy Elks, MA

19 July 2012 - 09.30 – 4.00pm

Ryde Eastwood Leagues Club

117 Ryedale Road, West Ryde, 2114

$60.00 + GST per person

For a number of years, people with disabilities, families, advocates and human service workers have been aware of the importance of social integration and inclusion. For the past 30 years, people have worked to bring integration about in the lives of people who have been marginalized and excluded by society. However, we find that, despite our best efforts many people with disabilities are still excluded from the societal mainstream and lead a segregated and congregated life. As a result, some people have become

disheartened about integration and have abandoned a vision of inclusive schools, neighborhoods, communities and society. We are seeing new programs and supports that are designed to segregate and congregate rather than to foster and nurture integration. We will identify and reflect upon the challenges facing us today as we try to move forward toward a vision of full personal social integration and valued social participation for citizens who are marginalized and excluded.

Who should attend? Anyone who is concerned about the exclusionary practices in our society and service system that surround people with disabilities. Anyone who desires to, or is working to bring about inclusive communities. Anyone who is perplexed about the idea of integration and struggling to understand what it is and how to create conditions that are favorable for true integration to happen. Anyone who has become discouraged about integration and desires to renew their vision and

passion.  

Download flyer and registration form

Would you like to have your say? This Saturday, Blacktown

NSW Council on Intellectual Disability has asked us to let you know that some places are available at this meeting:

If you have an intellectual disability we would like to hear from you !

The NSW Council for Intellectual Disability (NSW CID) will be running a small group where people will have time to say what matters to them.

NSW CID would like to know what people think about the NSW Governments plans to make life better for people with a disability.

When: Saturday, July 7

Time: 11am - 2pm

Where: Blacktown Library (Max Webber Library) corner Flushcombe Rd & Alpha St, Blacktown

It is free to come.

Lunch will be provided.

People will be given a small voucher for taking part.

If you wish to come you must book. 

Phone: 9211 1611

Come along and have your say !

Click here to open the flyer with pictures.

Great tip for easy shoe laces

Small adaptations can sometimes make a huge difference.  Here's a great tip from the mother of a teen with Down syndrome.  Thanks Anne-Maree:


My son has trouble tying his shoelaces and I wanted to share a solution we found today. From Athletes Foot, Performance Laces, that use a toggle to tighten the shoelace. They are designed for triathletes so they can get shoes on and off quickly. 


But for my young athlete one more level of independence and a way to get him to wear joggers without velcro, that we can no longer get in his size. He can squeeze and use the toggles easily. Thought I should share as I am sure other people must have this issue too. 


Cheers 
Anne- Maree 

Reading at home with your child: Learning Links parent workshop

A workshop advertised  in the Learning Links 2012 Workshops Calendar:

READING AT HOME WITH YOUR CHILD
A free workshop, presented by Sarah Axford, for parents only.
Reading at home is important to help children develop their skills and confidence. Sometimes parents lack the confidence to help their child read at home. This workshop is for parents of children in lower primary school who would like strategies in how to approach reading with their child at home.


Monday 30 July 
6.00pm - 8.30pm
Penshurst 


This workshop is funded by the Department of Education and Communities

For registration details for this event, and for the full calendar of events for professionals, schools, parents and carers, download the 2012 Learning Links Workshop Calendar here. 

Adam Wilkins and his dad ...

... featured in last week's Woman's Day magazine, under the headline Richard Wilkins: meet my amazing son, highlighting the recent fundraising event for Down Syndrome NSW on the occasion of Richard's 25th Anniversary at Channel 9.  An extract from the article is online here, and check out the fabulous photo accompanying it for the striking family likeness.

Weekend reading 30th June - 1st July

Apologies for the late posting of this week's 'weekend reading', but it is still Sunday here in Australia, and Saturday somewhere ...


Who wouldn't want a child like this?, Beverly Beckham, in the Boston Globe, 24th June, 2012


What can physicians learn from the neurodiversity movement? Christina Nicolaidis on the American Medical Association's Virtual Mentor website, recommended by the Adult Down Syndrome Clinic, with an excellent introduction, worth reading first - see their Facebook post from 20th June, where they share the link.


Stop seeing intellectual disabled adults as children, Bruce Burris, Op-ed on Kentucky.com 25/6/2012


Max - a tale of basic human rights denied, Gary Kerridge, on Ramp Up 29/6/2012