Thursday, 31 July 2008
All of our children are likely to confront some challenging experiences, whether we want them to or not. Chris at "Mothering by the seat of my pants" describes an experience that might have been very different for her daughter, and yet she made sense of it anyway - read Chris's post here.
The Young Carers Project, run under the auspices of Carers NSW offers some excellent opportunities and material for sibling aged 8 - 25 yrs, including camps.
Tuesday, 29 July 2008
Joint Media Release: The Hon Bill Shorten, Parliamentary Secretary for Disabilities and Children's Services; The Hon Brendan O'Connor MP, Minister for Employment Participation; Senator The Hon Joe Ludwig, Minister for Human Services
The Rudd Government today announced that one of the most significant barriers for people receiving a Disability Support Pension who wish to find employment will be removed.
From September 2008, DSP recipients who wish to find employment will undertake a simpler assessment process or a 'pre-employment referral' which will only collect information to determine the most appropriate employment services for the individual.
Currently, DSP recipients who want to look for work automatically have their benefit reviewed which can result in a reduction of their payments.There are currently more than 700,000 DSP recipients who are not required to undertake any activity.
Minister for Employment Participation, Brendan O'Connor, said the potential loss of benefits was one of the single biggest disincentives for DSP recipients who of their own accord want to find work.
"People with disabilities who want to work should be encouraged and supported to join in the workforce as much as they are able," Mr O'Connor said.
"However the Government has consistently heard from people who receive a Disability Support Pension, disability advocates and employment and Job Capacity Assessment providers while there are people who wish to work they are afraid of losing access to their benefits."
This is why the Government is acting to remove this major obstacle to employment for people on DSP.
"The Government recognises as well as financial benefits of employment there are significant social benefits of more people taking an active role in their communities." Minister for Human Services, Senator Joe Ludwig said the simpler 'pre-employment referral' Job Capacity Assessment would only collect information required for the job seeker to determine the most appropriate service.
"The simpler referral will allow the Job Capacity Assessor to identify which employment service providers are best suited to assist someone with disability back into the workforce without conducting a review of the person's DSP entitlement," Senator Ludwig said.
"It is common sense to help recipients of DSP who voluntarily want to find work. This change means people can get help without losing their DSP.
"Today's announcement is part of a broader Government strategy to encourage more people with disability and/or mental illness to participate in employment.
Mr O'Connor and Parliamentary Secretary for Disabilities and Children's Services, Bill Shorten, will hand down a National Mental Health and Disability Employment Strategy before the end of the year.
"This strategy will outline clear and practical steps the Government can put in place to overcome the barriers which make it harder for people with disability and mental illness to gain and keep work," Mr Shorten said.
"The Rudd Government wants to encourage more people who are disabled or have a mental illness to be actively employed."
Technical Aid for the Disabled (TAD) creates highly customised bikes at popular bike clinics where clients are examined and assessed. The bikes are then modified to suit the particular needs of each child.
Monday, 28 July 2008
You might need to just add that between p. 10 and 11, the child in the photos has put on the "special" protective glasses, as that is shown in the picture.
An 11 year old with Down syndrome, who does not look forward to dental visits reviewed it, and found it helpful. Younger children would enjoy it too.
It has been added to the DS NSW Library, and can be borrowed by members (email email@example.com )
First Experiences: Going to the Dentist, by Sally Hewitt, QED Publishing, 2004. One of our staff found it in a bargain bin at Angus and Robertson, for about $4 !
Sunday, 27 July 2008
The Learning, Education and Schooling pages have been rearranged to provide easier navigation and some new links.
Kathi has been busy adding to the library pages including a very useful list of all of our videos and DVDs, since we are often asked what we have on film. rather than books.The "New in the library" pages from the most recent issues of the Newsletter have been added (even the Spring 2008 list that hasn't been published yet!).
Saturday, 26 July 2008
Do you care for or know someone with an intellectual disability, under 65, who lives in a nursing home?
Natalie Berg is a doctoral researcher in Health Sciences at the University of Sydney, looking into the experiences of younger people living in nuring homes, and their carers. She is very keen to include the voices of carers/ family members of younger people with intellectual disability in nursing homes, to find out what younger people in nursing homes and their families think of their situation and would they like any changes in the future given the coinciding roll out of the Younger People in Residential Aged Care Program (YPIRAC) Program by the NSW Dept Ageing, Disability and Home Care.
The study is called "What’s it like to live in a nursing home? Exploring the experiences and residential preferences of people under 65, their families and nursing home staff." Answers will vary, and are being sought in a spirit of genuine enquiry. The study has the appropriate ethics approval.
It is a difficult area in which to gain access to the people most affected. Natalie says "I am aware after completing disability research in the past and working in public health and nursing homes for five years now the 'extra' burden it is for professionals and family members to participate in research but I have developed many strategies to minimise this burden as much as possible. I would be happy to send any information to anyone who might be interested in participating."
If this sounds like you, or someone that you know about, you can access further information from the Participant Information Sheet, by clicking here.
Or if you have any further questions or would like to find out more about this research, please call either Natalie Berg on (02) 4733 3249 or Leanne Togher from the University of Sydney on (02) 9351 9639 and they will be happy to talk to you.
What will you be asked to do? One parent from each family will be asked to complete a survey about your experiences in supporting your child without a disability aged 4-17 years. It will take approximately 20 minutes to complete. Your involvement is voluntary and anonymous. This means you can you can drop out at anytime and it will not be possible to identify you in the project.
How to get involved? If you are a parent of a child with a disability or chronic illness, and you have at least one other child without a disability, aged 4-17 years, and you would like to participate, please contact Laura or Sarah via the details listed below. Or you can follow this link to complete a brief survey: or visit www.parentingrc.org.au to read more about the study.
Laura Baldwin Ph: 0413 711 171 firstname.lastname@example.org
Sarah Thompson Ph: 0401 393 960 email@example.com
Friday, 25 July 2008
As there is a higher rate of congenital and developmental cataract in Down syndrome when compared with the general population, management of visually significant cataract is of prime importance in this group.
Patients with Down syndrome are also considered ideally suited to IOL [intraocular lens] implantation because of difficulties with contact lenses or spectacle wear.
This study has shown that cataract extraction with or without IOL implantation is an effective and worthwhile procedure with a good visual outcome. The large myopic shift in this cohort of patients has previously been described and must be taken into account when planning surgery.
Gardiner, C, Lanigan, B, O’Keefe, M, Postcataract surgery outcome in a series of infants and children with Down syndrome, British Journal of Ophthalmology 2008; 92:1112-1116
Click here to read the full text of the report, on the British Medical Journal group's website, or you can download a free .pdf copy.
Thursday, 24 July 2008
The trend is complicated by the introduction of widespread pre-natal testing and increasing numbers of all babies born to women over 35 years of age.
The abstract concludes: Increasing maternal age and improved survival of children with Down syndrome have offset the effects of prenatal diagnosis followed by the termination of pregnancy and declining general birth rate.
Click here to read the abstract and Dr Len Leshin's comments on Down Syndrome: Health Issues.
Click here to purchase a copy of the full text of the paper from the publisher.
Wednesday, 23 July 2008
Parliamentary Secretary for Disabilities, Bill Shorten, says national reporting tools will be used to work out service benchmarks.
Tuesday, 22 July 2008
The media focus shifts between the claims of 100% accuracy for a range of tests in clinical trials (which might well be correct), the impact on the share price of the companies that will market the tests commercially, and the wider ethical and cultural questions raised (some of which has been the subject of previous posts).
These three writers' recent publications come from first hand experience of living with a person with Down syndrome, and an examination of that experience that goes way beyond sentiment:
Amy Julia Becker, writing in the Philadelphia Enquirer, 20th July 2008: Down Syndrome is a part of who my daughter is
Beverly Beckham, writing for the Boston Globe, 20th July 2008: Learning Love from Baby Grace
Fiona Place, in M/C Journal (a journal of media and culture), July 2008: Amniocentesis and Motherhood: How Prenatal Testing Shapes Our Cultural Understandings of Pregnancy and Disability. Fiona, who lives in Sydney, writes a column in our quarterly Newsletter, and maintains her own website: Down Syndrome: A Parent's Perspective
- Supporting People with Learning Disabilities - blog
Steve Hardy's blog aims to "keep those who support people with learning disabilities up to date with useful information and resources".
- Clear Thoughts addresses the needs of people with learning disabilities (the UK term - we use "intellectual disability" in Australia) who have mental health concerns, and the people who care for them. While much of the information pertains only to services in the UK, there is also universally relevant information - and there is plenty of need for more information about the dual diagnosis of intellectual disability and mental health problems. The site has strong visual support built in, plain language sections, and easy-to-use navigation buttons to meet the needs of people with intellectual disability seeking information for themselves.
- Challenging Behaviour Foundation - generally applicable material includes information sheets and newsletters, addressing needs that often go unmet.
Monday, 21 July 2008
ATTORNEY-GENERAL, THE HON ROBERT McCLELLAND MP
MINISTER FOR FOREIGN AFFAIRS, THE HON STEPHEN SMITH MP
PARLIAMENTARY SECRETARY FOR DISABILITIES, THE HON BILL SHORTEN MP
Australia has today ratified the UN Convention on the Rights of Persons with Disabilities, making Australia one of the first Western countries to ratify the Convention.
Australia joins 29 other countries around the world in a move that aims to promote a global community in which all people with disability are equal and active citizens.
“Ratifying the Convention clearly demonstrates the Rudd Government’s international commitment to ensuring people with disability are treated equally and not as second-class citizens,” Attorney-General Robert McClelland said.
“This significant achievement is the result of substantial collaboration by Government and Non-Government stakeholders,” Mr McClelland said.
“I applaud the co-operation of these bodies who have successfully worked together to promote this historic international instrument,” Minister for Foreign Affairs Stephen Smith said.
“Australia has a long-standing commitment to upholding and safeguarding the rights of people with disability and ratifying the Convention sends this unequivocal message to the world,” Mr Shorten said.
The ratification, which took place overnight in New York, comes after the Rudd Government expedited its ratification processes and the Joint Standing Committee on Treaties supported taking binding treaty action last month.
It also means Australia can participate in the inaugural election of the Committee on the Rights of Persons with Disabilities. The Committee will oversee the implementation of the Convention.
While Early Childhood Intervention services are welcomed by and supportive for most families most of the time, ambivalence about the perceived demands of intervention (at least at times) is not uncommon. Consider discussing your views with your service providers, with other parents, and you are always welcome to call our Parent Support Team, on 02 9683 4333.
Thursday, 17 July 2008
Ray Walsh House Foyer Gallery
437 Peel Street, Tamworth
Challenge Disability Services have been providing support services for people with disabilities since 1958. To celebrate their 50th year, Challenge Disability Services are holding an Art Exhibition with prizes for people with disabilities to participate in a community event and to celebrate their skills. Total prize money of $2,000 is on offer for selected art works. People with disabilities from the New England, North West, Dubbo and Hunter areas of NSW are encouraged to participate.
Entries Close 31 July 2008 and selected paintings will be exhibited 06 August – 02 September 2008. For entry forms or more information phone Graham Dooley at Challenge Disability Services on 02 6766 1288 or email to firstname.lastname@example.org
Wednesday, 16 July 2008
Wing says he draws the line when the abuse is directed towards his sister, whom he protects fiercely. Wing organises several fund-raising functions for Down charities.
Sunday, 13 July 2008
Saturday, 12 July 2008
Chris is a US mother of three children, one of whom has Down syndrome. Her blog entry at Mothering by the Seat of My Pants for Thursday 10th July paints a nice picture of how family life can be challenged and given new perspectives by an event like the the birth of a child with Down syndrome.
Read it here - and take a look at the photo on the right of Tulips and Italian Bread - Holland and Italy United. Looks Good to Me! You probably know what she means ....
A Little More: To ask or not to ask ....
Jennifer Groneberg's contribution to Parent Dish for 10th July considers the question beloved of children in public places:
"Whats' wrong with him?" ...... I lift my finger to my mouth in the universal sign for "shhhh." All 3 of my children look at me, confused. They don't understand why I don't want to talk about it - we usually talk about everything, a running dialog on the state of the day ....
Her reasoning and conclusions are here.
Journey .... We make the journey. Then the journey makes us.
Dave Hingsburger has a wealth of stories, many of them about people with Down syndrome and their families. There's a short but good one amongst the three he tells in this entry (from 7th July) on Chewing the Fat. There's always something to think about, often something to laugh about - that's why so many of us read Dave's blog so regularly.
Friday, 11 July 2008
The study, which has been published today (10th July 2008) by Dr Heather Skirton, Deputy Head (for Research) of the School of Nursing and Community Studies, at the University of Plymouth, and Dr Owen Barr, Head of the School of Nursing, at the University of Ulster, raises a number of concerns about the way that antenatal screening is carried out ......
......Researchers gathered views from 135 prospective parents and 100 health professionals, mainly midwives, across the UK to find out what sort of information was given out at antenatal screenings and to find out how they felt the process could be improved. Their findings included:
- Parents felt that they did not have enough time to consider their decisions and that sometimes screening was not discussed until the second trimester. Many midwives said that they did not have enough time to spend on the issue of screening.
- Parents and midwives both felt that too much information was given about birth and postnatal care at early appointments at the expense of information about screening.
Concerns were raised about how parents who have difficulty reading or those with English as a second language access printed information.
- Pregnant women and their partners felt that a decision about screening should be made by both parents but most midwives said that they only involved the father ‘if they happened to be present’.
- Concerns were expressed about the way that having a child with Down syndrome is presented as a wholly negative experience.
She seeking families and children in the Bathurst area who have children in Year 3 or above at primary school and are the sibling of a child with additional needs. The study will involve interviewing the sibling, as well as other significant people in their lives, such as parents, the brother or sister with additional needs, and their teacher. Each participant will be interviewed once, with interviews taking between 15 minutes and 1 hour. The results of the study will be used to inform educators about the significant experiences of siblings of children with additional needs.
Click here to download an information package about the research project
Contact Jacqui Barr on (02) 6332 9107 or email email@example.com for more information.
Tuesday, 8 July 2008
Down Syndrome Online has been updated to simplify navigation and to introduce a cleaner layout. We have also introduced a new search system - powered by Google - across our web sites, making it easier and quicker to locate information.
This update also paves the way for the release of new online editions of the Down Syndrome Issues and Information education series and adult series of books over the coming weeks.
Speech and language book online
Speech, language and communication for individuals with Down syndrome - An overview, by Sue Buckley, is now available in full online. This book examines what is understood about speech and language development for young people with Down syndrome and the principles of effective intervention and teaching support.
This is one of many books in the Down Syndrome Issues and Information Education Series. Further online editions will be available over the coming weeks.
Keep in Touch
As well as this occasional email news, we have launched improved news feeds. You can find the feeds and subscription options for email news at the DownsEd In Touch web site. Please provide your comments and feedback via the news feeds or join our email discussion groups.
Monday, 7 July 2008
Monday 11 August 2008
Thursday, 3 July 2008
Saturday 23 August 2008, 10am – 4:30pm
The 2008 Biennale of Sydney, Australia’s leading festival of contemporary art, opens up the world of art for people with disabilities. With over 180 of the world’s most exciting artists on show, the Biennale of Sydney will illustrate sound of a video installation to the Deaf, offer visual interpretation of a painting through signing to the Blind, and provide physical access into exhibitions, as part of their program. Under the theme Revolutions – Forms That Turn, the exhibition explores the urge to rebel - AND this is where they lead the way in festival access.
On Saturday 23rd August (from 10:00am – 4:30pm) the Biennale of Sydney, long-term partner of Accessible Arts, the NSW peak arts & disability peak organisation, will present the Lord Mayor’s Community Access Day. This daylong event, to be launched by Sydney’s Lord Mayor Clover Moore, will unlock the exhibition’s key themes and artworks for people with disabilities and their carers. It will offer evocative audio descriptions and guided tours accompanied by Auslan interpreters.
The FREE tours are designed to make art accessible to all by including tactile experiences, and easy to understand descriptions for people with intellectual disabilities at each of the venues. Free wheelchair friendly transport between venues will also be available on the day.
Sancha Donald, CEO Accessible Arts said,
“The Biennale of Sydney continues to encourage and support access for people with disabilities and those who are limited to experience the arts in other capacities. By providing accessible tours and transport to the most cutting-edge contemporary art from around the world, the Biennale is setting a strong moral example for a sustainable future of the arts.”
She also added,
“It has never been more competitive to attract audiences to arts events and the Biennale has demonstrated leadership in encompassing artistic excellence and enhancing access to the 1 in 5 members of the Australian community who have a disability. I congratulate them and look forward to celebrating the Lord Mayor’s Community Access Day.”
These programs will be presented in the three principal venues – Pier 2/3, Hickson Rd, Walsh Bay; Museum of Contemporary Art, West Circular Quay; and The Art Gallery of New South Wales, The Domain. The FREE accessible bus will be circulating between Circular Quay, the Museum of Contemporary Art, Art Gallery of NSW and Pier2/3 throughout the day enabling patrons to attend tours at all three venues.
A specific tour for people with intellectual disabilities has been scheduled during the day.
Click these links further details in .pdf files - the complete press release from Accessible Arts and Accessibility Information for all venues.
Accessible Arts website: www.aarts.net.au Click here for the news page about this event.
Tuesday, 1 July 2008
This range of books comes in full colour, **laminated for longevity, rounded corners for safety and is a useful, fun learning tool for all children,especially those with additional needs.
** Limited edition laminated. Further editions in 250gsm board, plastic cover.