Thursday, 30 December 2010

Library Thursdays: Most Popular of 2010

Popular resources for 2010 had a few differences but the top titles of course remain the new parents resources: Gifts: Mothers Reflect on how Children with Down Syndrome Enrich Their Lives, edited by Kathryn L. Soper and Down Syndrome: The First 18 months DVD by Will Schermerhorn.
The next most popular resources were also
for new parents: Babies with Down syndrome by Susan Skallerup and Development in Practice: Activities for babies with Down syndrome DVD by Down Syndrome Education International.


Next comes Teaching Children with Down Syndrome about their Bodies, Boundaries and Sexuality by Terri Couwenhoven,

Mental Wellness in Adults with Down Syndrome
by Dennis McGuire & Brian Chicoine,

Gross Motor Skills in Children with Down Syndrome by Patricia C Winders.

Roadmap to Holland by Jennifer Graf Groneberg,

Development in Practice: Speech and Language Activities for preschoolers with Down syndrome (a DVD produced by Down Syndrome Education International,

Three new titles round out the top ten:

the Australian Dance like Nobody's watching DVD directed by Liz Collins, narrated by Paul Matley about his life and what it means to have Down syndrome),


the revised edition of The New Social Story Book by Carol Gray,

and Gifts 2: How People with Down Syndrome Enrich the World, Kathryn L. Soper, ed.


With a few titles arriving at the end of the year that are already in high d
emand (Down Syndrome Education Conference DVDs and The guide to good health for teens and adults with Down syndrome by Dennis McGuire and Brian Chiccoine), there will be different 'most wanted' next year.

Thursday, 23 December 2010

Adult Down Syndrome Clinic: information posts

The Adult Down Syndrome Clinic in suburban Chicago is known world-wide for its experience and expertise in providing health care to people with Down syndrome since 1992.  Its clinicians, Drs Brian Chicoine and Dennis McGuire are the authors of the well known and highly regarded books, Mental Wellness in Adults with Down Syndrome (2006) and The Guide to Good Health (2010). Both of the books are available to be borrowed by Down Syndrome NSW members from our library (reopening from Monday 10th January).

Via a community Facebook page, the clinic also provides information on specific topics and health concerns, in small bites.  The latest posting is on 'calcium and osteoporosis' includes some suggestions for dietary sources of calcium, and is available here.

You do not need to have a Facebook account to access these pages.  Click on "Adult Down Syndrome Clinic notes" immediately under the profile image to link to other information postings.

Managing changes to routines during and after the holidays

Joan Medlen's recent blog, The Ultimate Routine-Killer: Winter Break, about managing the lack of routine that happens during the northern hemisphere winter school break will ring bells for many families in Australia where the festive season comes at the beginning of an often much longer summer break, followed by some major transitions. 
Joan provides practial strategies for managing one-off events, and an example of a visual  way of helping someone with an intellectual disability and communication impairment to prepare for breaks in routine and the big change to a new school environment, or the transition to post-school life.  Easily adaptable to other situations - as she says, an additional task now that could save time and frustration in the weeks to come. Maybe enlist the help of siblings who might be at a loose end in the holidays?

Wednesday, 22 December 2010

Growing older with Down syndrome: an information event for parents and family carers of people with Down syndrome aged 35 and over

Advance notice of  - registration will open from 11th January 2011

How might growing older impact on our son or daughter?
What do we need to know?
What supports might we need, and where will we find them?
Just how common is dementia? What should we look for?

9.30 am - 2.00 pm
Saturday 26th February 2011

Speakers:
Mary Bills, Alzheimer’s Australia (NSW) educator
Jill O’Connor, Down Syndrome NSW

Your questions are welcome, and time for discussion will be available.

Anderledy Lodge
Hospitality and Conference Centre
(Located within the grounds of Mary MacKillop Place)
80 Williams Street, North Sydney

There is no charge for this event, but booking is essential for catering. Morning tea and a buffet lunch will be provided.
 
Similar events will be offered in regional NSW during early 2011.
 
Information on Growing Older with Down Syndrome is also available from the Down Syndrome NSW website, here.
 
An Australian Government Initiative, presented by Down Syndrome NSW.

Tuesday, 21 December 2010

In late August we posted  here about a very important research study from the highly regarded Down Syndrome Research Group at the University of Arizona.  Now Dan Wetmore, at the equally highly regarded Stanford University School of Medicine has provided a very useful review of the Arizona study, via his blog, Innovations in Neurodevelopmental Disorders:

Article review: "Development and validation of the Arizona Cognitive Test Battery for Down syndrome" by Edgin and colleagues

The review looks at why the new test battery is needed, what it assesses, gives some examples of the tests, and discusses future developments and what they will mean to our knowledge about people with Down syndrome

Innovations in Neurodevelopmental Disorders has been added to our 'blogroll' recommendations for regular reading (scroll down the right hand column of this page), as Dan Wetmore plans to blog weekly during 2011 about research relevant to those of us with an interest in Down syndrome and other neurodevelopmental disorders. If you visit the blog's home page you will see where his personal connection to people with Down syndrome began.

Monday, 20 December 2010

A letter to .... my mother, the carer

The UK newspaper, The Guardian is running a series of articles under the title "A letter to .... " - this weekend's is written by Emma Sterland, the sister of a 54 year old man with Down syndrome, to their mother.

The terminology and responses reported from his early days is way off the mark now, but was gnerally considered entirely acceptable then - it's not really so long ago. The actions of this mother, who "hhen a friend asked him to be the page boy at her wedding, ..... wrote an article in this newspaper about it", were pioneering.

Friday, 17 December 2010

Family Advocacy to host Paula Kluth workshop, March 2011

Dr Paula Kluth
3 - 4 March 2011

Joyful learning:  Engaging all students in the inclusive classroom
West Ryde (Sydney)

Family Advocacy is excited to invite families, education staff and students, teachers, and other interested professionals to a two-day workshop facilitated by Paula Kluth. This practical and interactive workshop will provide participants with a range of tried and trusted strategies for inclusive classrooms. It will also include information about the latest research regarding inclusion of children with disability in education.

Dr. Paula Kluth is an internationally respected and published education consultant with many years of teaching experience at all levels. More information and resources on inclusive education are available at www.paulakluth.com

Download a flyer and registration form with all event details from the Family Advocacy website.

Thursday, 16 December 2010

Library Thursday: online resources from Queensland, and a new book from Woodbine House

The Down Syndrome Association of Queensland website has some very useful resources, including this booklet of Guidelines for Childcare/Prep workers (creating an environment within an early childhood setting that welcomes and supports a child with Down syndrome).

To access other online articles and resources, click on the Information about Down syndrome menu and follow the links from the  Related Links text box. Some resources can be ordered in print, some are available online only.

Woodbine House has released its new book and CD-ROM package, The Kitchen Classroom.   It is packed with visual supports. We expect to have copies in the Down Syndrome NSW library by early February 2011.

You can also follow Woodbine House activities, such as planned and new releases, on Facebook

For sale: heirloom rocking horse (proceeds to Down Syndrome NSW)


The opportunity of a lifetime to purchase your own family heirloom.
For sale:  one only, brand new, hand carved rocking horse.
Her name is Magic, and she has a time capsule in her tummy, with details of the woodcarver who made her and then donated her so that all the money received for her sale will go to Down Syndrome NSW.
Sale price:  $3,000

Please contact Bronwyn on 0412 666 034 or 02 6553 6014

Wednesday, 15 December 2010

Wordless Wednesday

New web pages on growing older with Down syndrome

The Growing Older with Down Syndrome section on the Down Syndorme NSW website has been updated this week, and some new pages have been added added:

News and events

Families' stories about growing older with Down syndrome 
 
Growing Older with Down Syndrome News Sheet issue 2, Summer 2010 - 2011

New pages currently in development are about:
  • research into ageing with Down syndrome and into dementia in people with Down syndrome
  • supporting people with Down syndrome to understand what is happening to friends who are ageing and develop dementia

Classroom language and reading trial update: free online event for early risers

Down Syndrome Education International has scheduled a free online research briefing that eastern Australian early risers might be interested to participate in tomorrow morning:

Online research briefings: language and reading trial update
Thursday, 16 December 2010 6:30 am (Australian  Eastern Summer Time)

Duration: 1 hour

Description: Researchers at Down Syndrome Education International and the University of York have recently reported positive initial results from a landmark study of a targeted language and reading programme designed for children with Down syndrome.

Join us to online to learn more about the study and what we hope it will deliver in 2011/12.  Register here.

Friday, 10 December 2010

Commentary on Stronger Together 2: NCOSS

NSW Council on Social Services (NCOSS) has issued a summary and comment on the recent announcement of funding for the second five years of the NSW Government's Stronger Together initiative for disability services:

The entire Stronger Together 2011-2016 can be viewed here

NCOSS SUMMARY:
Stronger Together 2011-2016 delivers $ 2.02 billion additional investment in disability supports over 5 years 2011-2016, building on the previous 5 years investment of $1.5 billion in today’s dollars. This totals over $5.5 billion for the Stronger Together period 2006-2016 in new disability spending. This does not include inflation or Commonwealth contributions from the National Disability Agreement, which will be additional. The 2011-2016 allocations will create an additional 47,200 support places for people with disability in NSW.
Some new highlights of this Stronger Together 2011-2016 expenditure include:
  • Emphasis on person-centred approaches becoming available from 2011/2013 with designated funding. From 1 July 2014, all people using ADHC disability services will have the opportunity to convert their services to individualised funding.
  • Closure of large residential centres or disability institutions, with designated funding for most centres. The target date for closures to be finalised is 2017/18.
  •  Annual reporting to Parliament on actual vs. planned expenditure as well as progress on the number of places implemented.

Stronger Together 2011-2016 commitments include: 
  • $63.1m for 4,700 new therapy and behaviour support places
  • $95m for 4,500 new flexible respite places
  • $248.4m for 2,800 new Community Participation places
  • $107.4m for 2,00 new day program places
  • $53m for 380 new intensive family support packages, including 180 packages targeting Aboriginal people and families
  • $21.1m for 1,000 flexible funding packages for children with autism
  • $77.6m for 3,700 early intervention packages for children and young people
  • $62.4m for 300 new Attendant Care places
  • $724.8m for 1,750 supported accommodation places, including the 300 supported living places and capital expenditure
  • $10m for payroll tax exemptions to employers of people with disability.
  • $255.4m towards the closure of government operated and NGO disability institutions
  • $25m training and development initiatives to promote workforce and industry capacity
  • $5m for Social Impact Bonds to improve early intervention outcomes
  • $57.5m for research, development and data initiatives 
NCOSS notes that Stronger Together 2006-2016 will have delivered more new disability support places in the ten years to 2016 than the entire service capacity up to 2005-06 in the areas of:
  • Community support
  • Respite
  • Family support
  • Post School Programs
  • Attendant Care 
This represents an overall increase of 146% over the entire capacity 2005-06 in disability services.
NCOSS welcomes the commitment of the NSW Government to
  • ensure that Stronger Together complies with the UN Convention on the Rights of Persons with Disabilities
  • implement the National Disability Strategy towards whole-of-government policies for people with disability
  • work with the Commonwealth and State and Territory Governments on the National Disability Insurance Scheme as a priority
  • work with the Commonwealth on the National Health and Hospital Reform Agreement to secure ongoing support for young people in residential aged care.  
The first phase of Stronger Together had a comprehensive table indicating how much spending would be allocated to which program, benefitting how many people in each year. NCOSS is pleased to see that the second phase 2011-2016 has also included a table with the same details of targets in spending and disability places.

NCOSS: www.ncoss.org.au

Thursday, 9 December 2010

National Disability and Carer Congress: May 2011, Melbourne

From the National Disability Insurance Scheme Campaign director, John Della Bosca:

The National Disability and Carer Alliance will next year convene The National Disability and Carer Congress: Make Every Australian Count to be held in Melbourne on May 2 and 3. Mark the date in your diaries now. Come along to this exciting event and hear from our elected representatives about their vision for people with a disability, their families and carers in this country, hear from international experts about developments in disability policy around the world and most importantly, hear from people with a disability, their families and carers about their hopes for the future.
This congress will be unlike others with many opportunities for participants to quiz presenters and engage in greater discussion and debate than is usually possible within traditional conference programs. A discounted subsidised rate will be offered for individuals with a disability and family members in order to ensure as many people as possible have the opportunity to participate. We are on the cusp of transformational change in this country – come along to the Congress and hear what it will mean for you and how you can be part of it. Registrations will open early next year – save the date and spread the word.

www.ndis.org.au

Library Thursday: an online resource on mental health and children with intellectual disability

The School Link website is home to the Children's Hospital Westmead School Link newsletter and a range of information on mental health and children with intellectual disability, a development of the existing School-Link Initiative to focus on students with an intellectual disability, " ... as they are a significantly at-risk population for experiencing mental health problems and disorders."

Three issues of the School Link Newsletter are available, all published during 2010. Highlights of the December 2010 issue include:
  • Feature article on Positive Behaviour for Learning by Mooney et al 2008 
  • The Training Curriculum Project goes to Rome by Lesley Whatson
  • A Day in the life of Cultural Clinical Consultant and case study by Hadia Baassiri
  • The Medicine Cabinet: Ritalin by George Liangas 
  • Appreciating the more important things of life: Professor Trevor Parmenter’s fest-schrift by Associate Professor David Dossetor
     
  • Upcoming training 
  • Resources/reading list
  • In the news/reviews 
  • Plus much much more!

Wednesday, 8 December 2010

Water Babies

A very nice interview with a young Irish mother .... accompanied by what is possibly the cutest baby picture of the year.  Click here for both the picture and the interview.

Tuesday, 7 December 2010

Down Syndrome NSW quarterly publications, December 2010

Down Syndrome NSW members will receive your quarterly publications mailing in your letterbox over the next few days.  Your package will include Voice, Down Syndrome NSW News and the DS NSW Update.

Voice, December 2010  - feature articles are available online hereVoice is a quarterly journal, published jointly by Down Syndrome NSW and Down Syndrome Victoria

Down Syndrome NSW News, Summer 2010-2011 issue, the NSW supplement to Voice, is available as a .pdf document here.

Speak UP! Issue  is incorporated into the print edition of Down Syndrome NSW News.  It can be downloaded as a stand-alone publication here.

Down Syndrome NSW e-Update December 2010/January 2011 is published online here.  The e-Update is a monthly information bulletin and events listing.

The print edition of the Down Syndrome NSW Update, December 2010/January 2011 (which does not include some of the online content received after printing) can be downloaded as a.pdf document here.

Saturday, 4 December 2010

Responses to Stronger Together 2 funding

The NSW Government's announcement of $2 billion funding for Stronger Together 2, and responses from the disability sector have been widely reported in the media, including by the ABC, The Australian; Sydney Morning Herald, with today's print edition of the SMH adding that the NSW Opposition has pledged that the funding will be secure should the Coalition win government at the State election in March 2011.

Family Advocacy has analysed the news against it's current priorities, a Supported Living Fund for NSW and Self Directed Funding here.

The NSW Council on Social Security will publish its response early next week.

Friday, 3 December 2010

Stronger Together Stage 2: $2 billion additional funding for disability services in NSW announced today

The NSW Government today announced a further $2 billion investment in disability services over the next five years for the second phase of the Stronger Together 2006-2016 initiative - reaching out to the most vulnerable in the community and supporting their carers.
The first five years of the program has already injected $1.3 billion in growth funding to the disability sector.
This is the largest investment in disability services in New South Wales’ history and the most significant investment made by a State Government anywhere in Australia.
The additional funding will increase disability services capacity by an estimated 47,000 places over the next five years.
This funding is in addition to the $2.02 billion it will cost to continue to fund the expansion of disability services already provided under the first five years of the program.
It brings the total new investment by NSW over the ten years of Stronger Together 2006-2016 to a record $5.5 billion.
In addition, the NSW Government will provide a payroll tax exemption for employers of people with disabilities. The exemption will apply to all new employees who are employed after 30 June 2011.
The exemption will be provided in the form of a rebate to employers who fully pay the wages of employees with a disability.
The package follows extensive public consultation with disability service providers, people with a disability, their carers and their families.
Premier Kristina Keneally and Minister for Disability Services, Peter Primrose today joined disability service providers, people with a disability and their carers to announce the expansion of Stronger Together.
“Stronger Together has already delivered an additional 29,000 disability service places, and has helped service providers to be more responsive to the individual needs of people with a disability and their families,” Ms Keneally said.
“The disability sector has made it clear through our consultation sessions carried out earlier this year that Stronger Together has made a positive difference to people’s lives.
“We recognise there is still more to do to make sure we get the plan right for the next five years.
"People with a disability in NSW need more support, as do their families and carers, and this package is about giving disability service providers the flexibility they need to better respond to people’s needs.
“The Stronger Together program demonstrates how government and non-government sectors can work together to provide certainty for people with a disability, their families and carers.”
Minister for Disability Services, Peter Primrose said providing payroll tax exemptions for employers of people with disabilities will help deliver the NSW Government’s State Plan target of an extra 6,000 jobs for people with disabilities by 2016.
“This is great news for people with a disability and follows an announcement by the NSW Government earlier this year exempting employers of people with a disability from normal tendering requirements for Government goods and services,” Mr Primrose said. “The new register enables Government agencies to procure goods and services from companies that hire people with a disability without having to go through a separate tender process.
“National Disability Services (NDS) will keep a procurement register on behalf of eligible companies that fulfil certain requirements.
“The changes are detailed in a Premier’s Memorandum that encourages NSW Government agencies to access more goods and services from the register.”

Today is International Day of People with Disability


Information on events:
Don't DIS my ABILITY (NSW)
International Day for People with Disability (National)

There is much happening today and over the next couple of weeks.  Here are just a very few highlights for t:oday.

Up, Up and Away on TV tonight
The Down Syndrome NSW documentary about the Up, Up and Away Project, launched in October 2009 is to be broadcast on Aurora TV (a Foxtel community channel) to coincide with International Day of People with Disability, tonight, Friday 3rd December, 2010, at 9.00 pm.

Ramp Up - ABC website for people with disabilities about living with a disability
This site is where you will find ABC stories, interviews and videos on the subject of disability. As you browse through the site, the links you follow will take you to stories as they appeared in their original context, whether from ABC News, a TV program or a radio interview. Please enjoy.

What is International Day for People with Disability for?
Today, in his much loved blog, Rolling Around in My Head, Dave Hingsburger encapsulates experiences of people living with a disability in a series of short anecdotes, one for each month of a year, ending with December ...

I think it is today, a day in December that we celebrate the International Day of Disabled Persons. I admit to knowing nothing of the origin of the day. I admit that I’ve not even looked it up on the computer. I will, of course, because I’m curious by nature. I decided to write this before I discovered what others thought about the day or why others created the day. I just wanted to be sure to say. Society may give us a day, but we, the disabled, have snuck through the door and past pity and preconceptions, the twin prejudices that guard access … and have taken the year. All of it. Every day.

We claim our lives as lives to be lived, fully and freely. We claim our right to independence and our natural state of interdependence. We want nothing more than what others expect. Daily.

Every. Single. Day.

Teen Time Program at Katoomba opening in January 2011: places available

NADO's Teen Time Program at Katoomba will begin in January 2011. Places are currently available for the January school holidays, as well as After School Care for Terms 1-4 in 2011.
Teen Time is an After School Care and Vacation Care program for students with an intellectual disability attending or entering secondary school, 12 -18 years of age, whose parents or carers are working, studying for work purposes, or looking to enter/re-enter the workforce.

For referrals and enquiries please contact Katherine Woodward, RIAP Coordinator, Ageing, Disability and Home Care on 9841 9354 or enquiries to NADO on 9623 9855.

TAD adapted bike for sale

This bike is being sold by a Blue Mountains (NSW) family.  It was adapted for an 11 yr old who has Down syndrome:

I am selling a TAD (Technical Aid for the Disabled) modified bike if you are interested or perhaps you may know someone who is looking for a modified bike. It is a 20” Apollo LYNX.  It comes with a broad seat,  custom built training wheels, hand breaks, single gear and an adjustable bike helmet.  It is in excellent condition.  I am asking $375.00.  If you are interested in having a look or trying it out, contact the seller at hjhaigh@gmail.com   




Thursday, 2 December 2010

Library Thursdays: Think of me first as a person DVD

The theme of our 30th anniversary year, "We've come a long way, baby", is clearly illustrated in a DVD new this week to the library. Think of me first as a person (a film by George A. Ingmire III & Dwight L. Core, Sr., 2006) is a short documentary made by the father of a boy with Down syndrome in the US in the 1960s. It is a view into the life and possibilities of a person with Down syndrome 40-50 years ago. It is a beautiful film made by a loving father, Dwight Core, Sr. (discovered and made into a film by his grandson, George Ingmire). It is sad to see the lack of options for the family but it is also encouraging to know that lives for people with Down syndrome have vastly improved. This is due to the hard work of families of people with Down syndrome (like the Cores) to change attitudes and perceptions. The film has been selected for the (US) National Film Registry in 2006. Also included is My Favorite Child (Roger Richards, 2007), a film which shows Dwight Core, Jr. in his late 40s living with his sister a year before he died. There are other bits of extra footage and commentary from George Ingmire and others involved in the production.
The DVD is a great look at the history of the lives of people with Down syndrome and should be of interest to many.

Other links:
Think of me first as a person Facebook page

Mi Abuelo Productions

Preserving Think of Me First as a Person

If you'd like to borrow the DVD or anything else in the library, please call or email.

Wednesday, 1 December 2010

Dreamnight at the Zoo 2010 cancelled because of very bad weather - but keep your tickets!

What a shame that the weather means that the Zoo has had to cancel tomorrow's planned event:

It is with much regret that the Taronga Conservation Society Australia has had to cancel Dreamnight 2010 due to wet weather. We have been in touch with the Senior Forecaster from the NSW Bureau of Meteorology and the outlook for tomorrow (Thursday 2nd December) is very bleak.

This decision has not been made lightly and is firmly centred around us wanting to ensure Dreamnight is an absolutely magical event for the children.
We very much want intended Dreamnight 2010 attendees to visit Taronga Zoo. Each Admit 4 (four) ticket we have issued can now be used as general entry for four to Taronga Zoo, valid between 4 December 2010 and 30 June 2011.

Please note Dreamnight ticket holders can come in their own time and enjoy the Zoo over the Christmas Holidays or in the first half of 2011.

For information about opening times and activities: http://www.taronga.org.au/

Wordless Wednesday

Teaching children with Down syndrome to ask questions: an excellent blog

Does your son or daughter ask for help when they need it, or do they appear to try to "go it alone"?

Jennifer Bekins' thoughtful and practical post yesterday at Communication Skills for Life, suggests that a more proactive approach in teaching people with Down syndrome of all ages is necessary to help develop their ability to ask for help - a very strategic skill for every day life.

Communications Skills for Life is well worth a regular spot on your reading list.

Tuesday, 30 November 2010

A ‘fresh’ way of seeing the world

There is a great picture of the exhibiting artists and their work, with a man with Down syndrome front and centre, accompanying this Great Lakes Advocate story about an International Day of People with a Disability  arts event in Foster.

Extraordinary Visions Exhibition
Your Home Choices Unit 1, 6 Enterprise Court, Forster
Friday 3rd December - Friday 10th December (including weekend opening)
All works will be for sale.

Monday, 29 November 2010

First NSW Carers Advisory Council: members announced

The members of the first NSW Carers Advisory Council were announced on 24th November.
The Minister for Disability Services, Peter Primrose, who will chair the new council, said members would advise the NSW Government on issues affecting carers and the people they care for.
“The Carers Council will give a direct voice to the 750,000 carers in NSW who play a vital role in caring for people with a disability, people with mental illness or chronic illness, older people and people with dementia,” Mr Primrose said.
“There are also more than 90,000 carers under the age of 25 in NSW.
“A recent Access Economics national report estimated the replacement value of the care provided by informal carers at more than $40 billion a year.
“Governments alone could not possibly cope with such a task, however, carers provide more than just an economic benefit, they are part of people’s lives, often family or friends, who can provide love and support for people in need.
“The 14 members of the council, who come from around NSW, will represent the diversity of backgrounds and interests in the community.”
Ten members of the council are primary carers and the remaining four members include Elena Katrakis, Chief Executive Officer of Carers NSW and Professor Deborah Brennan from the Social Policy Research Centre at the University of New South Wales.
Two senior government representatives have also been appointed.
Mr Primrose said that the quality of applicants was outstanding, with more than 190 applications received.
“The 10 carers will offer a range of perspectives, expertise and experience gained through many years of caring, plus a great deal of passion and commitment to advancing the interests of carers across the state,” Mr Primrose said.
“I look forward to working with the Council and receiving their advice on the best ways to enhance public recognition of the needs and vital contributions of carers, and to improve practical support for them in their caring role.”

For more information visit: www.dadhc.nsw.gov.au/dadhc/Carers

Members of the 2010-11 NSW Carers Advisory Council

1. Deborah BEWICK
Deborah Bewick from Wagga Wagga in south west NSW, brings to the Carers Advisory Council over 15 years experience of being a primary carer for her daughter who has a severe intellectual disability and challenging behaviours. Mrs Bewick has experienced the impact of policies and services on carers and has practical ideas for improvements that could better support carers and their families. She also brings a valuable non-metropolitan perspective from her strong links with other regional and rural carers in her local community.

2. Nancy BOSLER OAM
Nancy Bosler, from the Northern Beaches of Sydney, is an older carer who has had both personal and professional experience of carer issues. At different times she has cared for family members with a physical disability and dementia. Additionally, her working life included working with families of children with a disability. She has great strengths in creating partnerships and has a particular passion for the potential of technology to reduce carer isolation.

3. Mary Lou CARTER
Mary Lou Carter is the mother of two most cherished sons. Through her sons and immediate family she has seen the full spectrum of ability, disability and care. She also understands at an individual and strategic level that the needs of carer-families are inextricably linked to the needs of the people for whom they care. Mrs Carter also brings a multicultural perspective to the Carers Advisory Council, having cared for and supported elderly parents with very limited English language skills.

4. Maryann HOUSHAM
Maryann Housham, from San Remo, is a Maori woman who has strong links to Aboriginal communities in the Hunter and Central Coast areas. Her caring experience crosses generations, being both a parent and grandparent of family members with a disability that encompass both mental health and intellectual disability issues. Her particular passions are communicating with carers from a range of cultural backgrounds, and increasing carers’ access to services and supports.

5. Elizabeth INGRAM
Elizabeth Ingram is an Aboriginal carer from Lake Cathie on the Mid North Coast of NSW. With over 20 years’ experience of caring for two family members with a mental illness, she brings to the Carers Advisory Council both a personal understanding of carer issues as well as a wealth of experience in supporting other carers in her community, including the development of practical carer resources.

6. Cheryl KOENIG
Cheryl Koenig from Menai in Sydney was thrust into the caring role 13 years ago when her son, aged 12 years old, was hit by a car. She has become an effective representative for people with brain injuries and their carers and is widely recognised for her role as a carer and advocate for carers. She was NSW Woman of the Year in 2009, and is the author of a book about her caring experiences.

7. Carolyn QUINN
Ms Carolyn Quinn has had experience of caring for family members with an intellectual and sensory disability for 21 years. Over that time she has developed strong carer networks and has presented to various audiences on her experience as a primary carer. Carolyn has extensive experience working as a consultant across the human services sector, both with government and non government organisations. She brings a broad perspective to the Carers Advisory Council and through her personal and professional experiences has a strong commitment to improving services for people with a disability and their carers.

8. Catharine RETTER
Catharine Retter, from Naremburn in Sydney, is a board member of Alzheimer’s Australia (NSW) and a member of the Consumer Dementia Research Network providing a consumer voice on dementia care research. For seven years she was the primary carer of a family member with dementia. She brings to the Carers Advisory Council excellent professional skills from the publishing industry, an interest in dementia as it affects both older and younger people and the family members who care for them, and a strong commitment to increasing the recognition of carers.

9. Peter STEVENS
Mr Peter Stevens, from North Sydney has an interest in dementia issues which is both personal and professional. For nine years he has been the primary carer for a family member with younger onset dementia. His professional interest led him to Chair the Alzheimer’s Australia (NSW) Younger Onset Dementia Summit in 2009. His perspective as an older male carer, combined with experience gained in a corporate career, will be invaluable to the Carers Advisory Council.

10. Tabitha WILSON
Tabitha Wilson is a young woman from the Eden Monaro area. While only 18 and in her final year of high school, Ms Wilson has years of experience as a carer for family members with mental illness and chronic health issues. She has a particular passion for and ideas about how the caring role impacts on young carers’ educational opportunities. With strong links to national and local young carer networks, Ms Wilson will be a valuable voice on the Carers Advisory Council.

Sunday, 28 November 2010

Buddy Walk in the Outback: Cobar 2010

The 2010 Buddy Walk - Australia season finished with a new event in outback NSW, on 7th November. The Cobar Weekly reported:
Sharon Harland decided to coordinate a Buddy Walk in Cobar in support of friends who have children with Down syndrome.
“I have a little friend Daniel who is five years old and also a neighbour, Jacqui, who both have Down syndrome,” Mrs Harland said.

“They are gorgeous, funny little people who are just a bit different to most other kids. “Until I met Daniel and his family, I knew pretty much nothing about Down syndrome so getting to know Daniel has helped me to gain a better understanding of his abilities.”
Mrs Harland said the aim of a Buddy Walk is for a community to show support to families of children with Down syndrome and to celebrate their children’s achievements.

“Daniel and Jacqui already have great support from their families, their schools and a number of local community groups they are involved in.
“As they grow up they will come into contact with more people, and it will help if those people know something about Down syndrome.
“The main focus of the Cobar Buddy Walk is on raising awareness rather than raising money.

“I will however be asking walkers for a gold coin donation which will go to Down Syndrome NSW which provides support for families with children with Down syndrome.

“If people finish the walk knowing one or two more facts about Down syndrome, then I’d class it as a success,” Mrs Harland said.



And a great success it was, with 163 people participating, including a contingent of 10 from Bourke, 2 1/2 hour away. Participants ranged from just five months (Gus who was pushed in his pram by his dad David) up to 76 years. The walk was also supported by a number of groups including St John’s School staff, Cobar Pre School staff, Cobar Scouts, Cobar Guides and the Cobar Weighwatchers group. After completing the 4.8km walk, many families finished the day with a sausage sizzle at the Newey. Donations, proceeds from the sale of Buddy Walk merchandise and the sausage sizzle helped to raise $850 for Down Syndrome NSW to support families with children living with Down syndrome.


Thank you Cobar!

Friday, 26 November 2010

Dance concert

Dancing Hearts Studio

Invites you to attend their


Disability Dance

End of Year Concert 2010

Sunday 12th Dec 2010

Club Five Dock Auditorium
66 Great North Road, Five Dock NSW 2046

Performance commences at 3.30pm (doors open at 3.00pm)
Adults $12, Children $6 (3‐10yrs)
For ticketing information and purchases please contact:
Phone: 0488 44 02 02
Email: info@dancingheartsstudio.com.au
Web: http://www.dancingheartsstudio.com.au/
 
Some of our members will be performing.

Thursday, 25 November 2010

Library Thursdays: Let's Cook! Healthy meals for independent living

For all those inspired by Master Chef and Iron Chef or those who simply want to cook and eat healthily, there is a new cook book in the library. Let's Cook! Healthy meals for independent living by Elizabeth D. Riesz and Anne Kissack (Appletree Press, 2010) is a highly visual cookbook created for adults with special needs who want an adult cookbook that is simply written with lots of pictures and clear steps. Riesz' daughter, Sarah, has Down syndrome and began cooking as a teenager. She began collecting recipes and these form the foundation of the cookbook.

There are over 50 recipes in this book. How to make food choices, how much to eat, serving sizes, food and kitchen safety, and kitchen tools are discussed. A graphic that helps plan a meal by building a "healthy meal" from three, four or five food groups is used throughout the book. The recipes are divided into sections by food group and sections within those: Grains, Vegetables (Non-starchy and Starchy), Fruit, Dairy, Meat & Beans (Eggs, Fish, Chicken & Turkey, Beef & Pork). They range from very basic: Baked Potato, Fruit Smoothie to more involved casseroles and other main dishes. A section in the back looks at making healthy choices when eating in restaurants and snacks. There is a great range of basic recipes. It is an American cookbook so there is the occasional unusual ingredient ["vegetarian or lowfat turkey breakfast links"] but for the most part it is very useable here. Frozen vegetables, instant rice and canned soups are often used presumably to make things simpler, but I probably would like to see a recipe for non-instant rice and more use made of fresh food. Still, the recipes are healthy and look great in the pictures. It is a great book for increasing independence and health.

It is the first book in a series called "On my own". I look forward to seeing the next titles in this series that focuses on "promoting and reinforcing life skills for the adult with special needs".

Also in the library: Easy Cook Books - an Australian series of visual cook books. Not as many words as in Let's Cook but it is also an adult cookbook. See previous blog.

If you'd like to borrow any cookbooks or anything else, just call or email.

Down Syndrome International announces World Down Syndrome Day Awards 2010

Down Syndrome International (DSi) is delighted to belatedly announce the recipients of World Down Syndrome Day Awards for 2010.
 
2010 is the first year of the World Down Syndrome Day Awards, which are presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome or contributed to scientific advancement related to Down syndrome. 
 
Visit the Down Syndrome International website for a list of the recipients, and their achievements.

Wednesday, 24 November 2010

Luke 14: supporting people with disabilities in Australian church communities

Luke14 is a CBM initiative aimed at equipping churches to welcome and include people with a disability. It is a process that assists churches to both reach in to improve church access and understanding, and reach out to offer support and friendship to people and families living with a disability in the community.

Luke14 provides the education, training and ongoing support that Christian communities need to become places of welcome for people and families living with a disability. A four-stage process of ministry development is at the heart of Luke14.

Disability ministry is a growing ministry need, yet only 5% of Australian churches have any intentional programs to include people with disabilities.


Inspired by Jesus’ call in Luke 14, CBM Australia has developed a program of the same name that seeks to better equip your church to meet the needs of your community.

The program is being launched in Sydney and in Wollongong this week: www.cbm.org.au/content/what-we-do/luke-14

Tuesday, 23 November 2010

Up, Up and Away on Aurora TV

The documentary about the Up, Up and Away Project, launched in October 2009 is to be broadcast on Aurora TV (a Foxtel community channel) to coincide with International Day of People with a Disability, Friday 3rd December, 2010, at 9.00 pm.

Transition to Work creates bridge from school to employment

An evaluation of the NSW Government’s Transition to Work program has shown that more than 50% of participants achieve employment and education outcomes.
The Minister for Disability Services, Peter Primrose, said that the program filled an important gap in disability employment services by enabling many young people with a disability to transition to open and supported employment.
“Many service users and their parents have told us that good employment outcomes would almost certainly not have been achieved without the Transition to Work program.”
Mr Primrose said that the evaluation report From Protection to Productivity – An Evaluation of the Transition to Work Program which was released, highlighted significant achievements for young people in the program.
“It found that Transition to Work is a very well designed initiative which creates bridges to enable young people with a disability to move from school to sustainable employment.
“While the evaluation report said that Transition to Work is delivering outcomes consistent with the aims and requirements of the program it also identified areas that require further development.
“These include the wide variation in the way services are delivered, the mixed employment outcomes achieved by service providers and the varied extent to which providers are able to confidently and pro actively link into the labour market.“
Mr Primrose said that the Keneally Government would continue to work with the disability sector to strengthen the program in line with the evaluation’s report.
The evaluation was commissioned last year by Ageing, Disability and Home Care (ADHC) to ensure that the Transition to Work program was assisting young people with a disability to gain employment after finishing school.
Mr Primrose said ADHC would use the report’s findings as a source of valuable information about how best to improve the Transition to Work Program and its employment outcomes.

Source:  Media release, Minister for Disability Services, 5/11//2010

Monday, 22 November 2010

The more colours we wear the brighter the world will be

Shoalhaven Disability Forum would like to invite people with a disability, family, friends and distinguished guests to come and join us for a DINNER DANCE to celebrate International Day for People with a Disability.

Theme: “The more colours we wear the brighter the world will be”

3rd December 2010
Bomaderry RSL Club 6pm

$16 per head $8 under 12 year old

Official Ceremonies commence at 6.15 pm and dinner will start at 6.30pm

Entertainment: Bomaderry Pride Singers, Bollywood Dancing exhibition, Music to dance to by a DJ for the night

Prizes: Lucky door, most colourfully dressed and most colourfully decorated table

Tickets: available till 26th November from Nowra Neighbourhood Centre 134 Kinghorne St Nowra ph 4421 5077

All Other inquires to ph 4429 3411

Source:  IDEAS NSW e-News Issue 11, 2010

The Inner West Disability Forum presents ‘This is MY Ability 2010’

CELEBRATE INTERNATIONAL DAY OF PEOPLE WITH A DISABILITY

Thursday 2nd December
10.30am - 1.30pm
Woodstock Community Centre 22 Church Street, Burwood
Free
Access to car park via Fitzroy Street
• Zumba • Bollywood Dancing • Origami • Drumming • Magician • Dance & Music • Face Painting • Coffee & Ice Cream • Light Lunch

For enquiries and bookings contact Ethnic Child Care Family and Community Services Co-op Ltd on 9569 1288

Sunday, 21 November 2010

Hawkesbury performance workshops: bookings open for 2011

Performance in the Gallery offers performance workshops for people with mild to moderate intellectual and physical disabilities at Hawkesbury Regional Gallery. Book now for 2011.

Further details are available from Accessible Arts website, here.

First Flight Crew: Don’t DIS my ABILITY

Accessible Arts NSW, the peak arts and disability organization across NSW, is delighted that hip hop group First Flight Crew have been selected as the faces of the Don’t DIS my ABILITY campaign for 2010.
First Flight Crew is an eight piece hip hop outfit from Western Sydney. Originally the crew came together in late 2008 as participants of a series of Accessible Arts and Club Wild workshops for people with a disability in song creation with hip hop artist Morganics.

Following this, the group was invited by Morganics to perform as part of a hip hop night with interstate and international artists, exposing the group to a new audience outside of the disability sector. First Flight Crew have been composing and performing widely across Sydney ever since with the support of Alison Richardson, Creative Programs Coordinator, Western Sydney Project. The Crew’s leadership and dedication to their art shows that anything is possible.

Accessible Arts’ Western Sydney Project has worked closely with arts centres and local councils across Western Sydney, raising awareness and creating opportunities in the arts for people with disability. This regional approach towards inclusive and accessible programs and practices for people with disability has fostered strong partnerships between the arts and disability sectors and local communities to ensure sustainability.

Sancha Donald, Accessible Arts CEO, recognizes the value of acknowledging First Flight Crew’s contribution to hip hop and their position as role models to other young people. ‘The core of our work is enabling and advocating for people with disabilities to be fully included in the creative and cultural life of our society, said Ms Donald. ‘First Flight Crew’s involvement in the Don’t Dis my ABILITY campaign is a real endorsement for providing opportunities to be creative and challenge perceptions about disability, and ability, as well.’

The Don’t DIS my ABILITY campaign is a state government initiative in the lead up to International Day of People with a Disability on December 3rd.

Upcoming First Flight Crew Gigs:

Don’t DIS my ABILITY Schools workshop and performance

Tuesday 23 November 2010 at 1:30pm
Sydney Secondary College, Black Wattle Bay Campus,
Taylor St, Glebe NSW 2037

Get DIS Party Started

Thursday 2 December 2010 from 1:00 – 3:00pm
Get DIS Party Started
Revesby Workers Club, 2B Brett St,
Revesby NSW 2212

The Wharf Open Day
Sunday 5 December 2010
Pier 4, Hickson Rd Walsh Bay NSW 2000

Bookings essential: RSVP, Free call 1800 893 044 or email companioncard@nds.org.au
For more information, visit www.aarts.net.au

Source:  IDEAS E-news #11 2010

A beautiful image ....

One of our staff was recently in Paris, and photographed this sculpture at the Rodin Museum.  The standing child bears a close resemblance to a child with Down syndrome.  Just beautiful.


We haven't been able to find any documentation on the work, but if you happen to be in Paris, perhaps you could let us know what you think?

Thursday, 18 November 2010

Down Syndrome NSW Board, 2010 - 2011

31st Annual General Meeting of Down Syndrome Association of NSW Inc (Down Syndrome NSW) was held on Wednesday 17th November 2010.
A new Board was elected:

President: Chris Pollock
Secretary: Ken Hancock
Board members:
Ruth Cromer (UP! Club President)
Candy Connors
Maha Daizli
Brad Dewhurst
Hannah Edwards
Perry Gilsenan
Sarah Harvey
Rod Kelly
Joe Lawler
Jackie Little
David Ross

Biographical notes provided by Board members, and the 2009 - 2010 Annual Report are available here

Parent survey about receiving diagnosis

A communication student from San Francisco State University is conducting research on "what type of communication produces the most satisfaction when a health care provider delivers the diagnosis of Down syndrome to parents."
If you are a parent or guardian of a child with Down syndrome and are over 18 years old, you are invited to participate in this study. It consists of taking a survey, which will take approximately 20 minutes, that asks parents to answer questions regarding the communication behaviours used during the initial diagnosis to see what types of communication are the most satisfying.
To take the survey go here.
If you have any questions contact Holly Logan at hlogan814@gmail.com or hclogan@mail.sfsu.edu.

Library Thursdays: Thanks to Edme Steirn


Edme Steirn has been a long time volunteer to Down Syndrome NSW. She has been here longer than most of the staff and works diligently and with humour at whatever varied tasks she has been asked to do. She has been an invaluable help to the library and last night at the Anniversary dinner she was recognised with an award for all her contributions in her 10 years of service.
She covers books, prepares mailings, files and shelves resources, photocopies, stamps and makes sure that all the new parent kits are up to date with inserts and in plentiful supply. Her knowledge of several languages also comes in handy at times. Edme is a quiet achiever but has plenty of stories which keep us all working happily. She has an amazing committment to the Association no matter what is happening in the rest of her life and we love and appreciate her. Thanks, Edme!

Wednesday, 17 November 2010

Audrey O'Connor: fashion model

Catch up with Audrey O'Connor, Don't DIS my ABILITY ambassador, actor and now fashion model, here.  She has a new movie role coming up too .....

Annual General Meeting: Board candidates; statements

A final reminder .....

The 31st Annual General Meeting of Down Syndrome NSW will be held today:

5.00 pm, Wednesday 17th November 2010
at the Waratah Room, Parliament House, Macquarie Street, Sydney

All of the papers related to the meeting AGM papers are available here.
A new Board will be elected at the meeting - candidate statements are available to read here.
The 2009 - 2010 Annual Report is available to download here.

Sunday, 14 November 2010

Research participants invited: University of NSW

Are you interested in helping us learn more about memory development in preschoolers with Down syndrome?

We are currently looking for participants aged 3-5 years old with Down syndrome for a study at the University of New South Wales. The study would involve your child playing a series of memory games with pictures and toys. Your child will also participate in a standardized task to measure cognitive and communication skills.
The study is on-campus and $20 petrol costs and paid-parking will be reimbursed. Your child will also get to choose a small toy to take home at the end of the session.
If you’re interested in further information or would like to participate, please contact Lynette Roberts on 0405 721 076 or at lynette.roberts@unsw.edu.au 

Saturday, 13 November 2010

Dream Cricket Day

The inaugural Dream Cricket Day at Bradman Oval last Friday, 29 October, gave children with disabilities the opportunity to play a game of cricket on the historic Bowral ground.

The day saw more than 80 children from the Southern Highlands, Penrith, Goulburn and Queanbeyan given the chance of a lifetime. They were also inspired by World Down Syndrome Swimming Champion Daniel Rumsey, who tossed the coin to start the matches and presented medals to the winners at the end of the day. Daniel won 14 gold medals and broke 13 world records at the event in Taiwan in October. 

Photos here.

The Kookaburra men’s hockey team striker Glenn Turner also met the children and presented medals to the winners at the end of the day.

The children also visited the neighbouring Bradman Museum. The day was intended to promote their health, wellbeing and interest in cricket.

The Dream Cricket Day is an initiative of The Movement Disorder Foundation conducted by The Rotary Clubs of Berrima, Bowral-Mittagong and Moss Vale with the support from the Bradman Foundation, the Cerebral Foundation, Northcott Disability Services and many generous sponsors.

Thursday, 11 November 2010

Library Thursdays: The Power to Spring Up

The Power to Spring Up: Postsecondary Education Opportunities for Students with Significant Disabilities by Diana M. Katovitch (Woodbine House, 2009) looks at continuing education past high school for people with disabilities that include Down syndrome. It discusses the benefits for the people with disabilities as well as society to having educational opportunities after students leave high school. The book looks at the various types of programs in the United States and Canada. The needs of the student and questions to ask to determine the best program are covered. Specific programs in existence in the United States are detailed to give an idea of what is available, but it is explained that more programs are being created all the time.
There is advice for students to help them decide what may be right for them, advice to secondary school teachers for preparing students with the skills they will need and advice to the parents to help their child succeed, much of which centers on "letting go" and building independence. Funding is also looked at.
Although the book is not specific to Down syndrome, it is relevant to those who are interested in continuing education of any kind after high school. Some of the advice could be of use to any student with or without a disability moving away from parents. There are good references and recommended reading and also a list of resources but the resources are probably more useful to Americans.
I think it is a good companion to the Down syndrome transition handbook by Jo Ann Simons (reviewed here) for students about to finish high school and their families who are ready to think about options for the future. Keep an eye out for an article by Patricia O'Brien in the next (December) issue of Voice about a tertiary program at Trinity College in Dublin and the postsecondary education in Australia.
If you'd like to borrow The power to spring up or anything else in the library, just call or email.

ACT reading workshops postponed

The ACTDSA/Macquarie University early reading workshops scheduled to be held in Canberra this weekend have had to be postponed.   It is anticipated that they will be re-scheduled for early 2011.

Wednesday, 10 November 2010

Online Arts Worker Directory

The Artist Directory is for arts, disability and community organisations that wish to employ independent arts workers, listed in arts categories:
• Dance
• Music
• Theatre
• Visual Arts
• Film and Media Arts
www.aarts.net.au/arts-worker-directory

Tuesday, 9 November 2010

New health services, south western Sydney and Southern highlands.

This post on The Scene has information about two newly established health care teams for people with disabilities in the Sydney South West and Southern Highlands areas.

Australian Childhood Vision Impairment Register

The Australian Childhood Vision Impairment Register is sponsored by the Royal Institute for Deaf and Blind Children, in partnership with Guide Dogs, Vision Australia, other low vision service providers, children with vision impairment and their families.
The Register is the first of its kind in Australia, and is capturing uniquely Australian data which will be used to improve services for children with vision impairment. The data is also available to researchers who work in the area of eye disease and disorders of vision
If you are a child or a parent or guardian of a child with a vision impairment, between the ages of 0-18 years, you are invited to join the Australian Childhood Vision Impairment Register. Once a child has joined they will be offered membership to Oz-VisKids - a free club for children and parents to learn more about vision impairment and the services offered in Australia.
Some children with Down syndrome are already registered and anyone that it can potentially help is invited.
More information and online registrations is available here. Send an email to Jill Watson jill.watson@ridbc.org.au  or call (02) 9872 0303 for more details.