Estate Planning and Disability Trusts
What?
Solicitors Jonathon Harris (Harris, Hyde & Page Solicitors and Attorneys) and Caroline Bass will discuss financial options and the new regulations. Handouts will be available.
When?
6:30pm for 7pm to 9pm on Thursday 20 August 2009.
Where?
Warringah Mall Library (Multifunction room), same level as Hoyts Cinema, Brookvale.
RSVP?
Essential to book by phoning Marjorie on 9942 2449 or 9942 2686, or email janzm@warringah.nsw.gov.au
Wednesday, 5 August 2009
Tuesday, 4 August 2009
Research: the genetic architecture of Down syndrome
Collaboration between research teams at the University of Utah and Yale University is helping to clarify how genes cause the individual features of Down syndrome, by applying high level genomics technology to the genetic material of people with rare forms of Trisomy 21. They have so far related particular genes to the development of associated conditions such as intellectual disability, Hirschsprung's disease and acute megakaryocytic leukaemia.
The research is reported by the Salt Lake City Trubune here, the Deseret News here, and the full text of the research report is available online here, from PNAS.
Reference:
Korenberg, J and Snyder, M, et al. The Genetic Architecture of Down syndrome phenotypes revealed by high resolution analysis of human segmental trisomies, Proceedings of the National Academy of Sciences, Vol 106, No 29, pp 12031 - 12036, July 21, 2009
The research is reported by the Salt Lake City Trubune here, the Deseret News here, and the full text of the research report is available online here, from PNAS.
Reference:
Korenberg, J and Snyder, M, et al. The Genetic Architecture of Down syndrome phenotypes revealed by high resolution analysis of human segmental trisomies, Proceedings of the National Academy of Sciences, Vol 106, No 29, pp 12031 - 12036, July 21, 2009
Monday, 3 August 2009
Health for All: Wollongong 1 October
Hosted by The Disability Trust
Wollongong University Innovation Campus
Squires Rd, Fairy Meadow, Wollongong NSW
Wollongong University Innovation Campus
Squires Rd, Fairy Meadow, Wollongong NSW
• Managing Health Care Issues
• Promoting Healthy Lifestyles
• Providing Clinical Support
• Working with people with disabilities & their families
• Service Provision
Registration by 1 September 2009.
Cost $100, Pensioners $50.
Click here for a flyer and registration form
For information contact: Jan May or Carol Armstrong
on 4255 8000 or email carola@disabilitytrust.org.au
Saturday, 1 August 2009
Measuring the unmeasurable
Michael Bérubé is Paterno Family Professor in Literature at Pennsylvania State University, and the father of a teenage son who has Down syndrome, adn a sometime drummer (according to Wikipaedia). He has written in this week's Times Higher Education Supplement (UK) about how education in the humanities can mould thinking, and how difficult it is for research to measure the effect, arguing in part .....
We believe that education in the humanities consists of training in how to think and in developing a richer language for thought ......
We have some wonderful anecdotal evidence, of course. Here is mine: there is no question in my mind that I was better equipped to deal with the birth of a child with Down's syndrome because of my training in the humanities.
I am less inclined to pathologise disability, more willing to entertain the idea that nothing human should be alien to us, more sympathetic to the argument that many disabilities are disabling chiefly because our built environments and social policies make them so. But I am not sure I can quantify that - and I am pretty sure I do not need to.
Click here to read the complete article online. (Thanks to John Smithies at the DSA in London for alerting us to this link.)
Michael Bérubé's book Life As We Know It - A Father, A Family, and an Exceptional Child (1996) is available for loan to members from the DS NSW library.
Links to his writing and blogging activities on the subject of disability can be found in this post. His Penn State "people" page lists as a current project a new book "Disability and Narrative", something to look forward to. It also has a great photo of Michael with Jamie.
We believe that education in the humanities consists of training in how to think and in developing a richer language for thought ......
We have some wonderful anecdotal evidence, of course. Here is mine: there is no question in my mind that I was better equipped to deal with the birth of a child with Down's syndrome because of my training in the humanities.
I am less inclined to pathologise disability, more willing to entertain the idea that nothing human should be alien to us, more sympathetic to the argument that many disabilities are disabling chiefly because our built environments and social policies make them so. But I am not sure I can quantify that - and I am pretty sure I do not need to.
Click here to read the complete article online. (Thanks to John Smithies at the DSA in London for alerting us to this link.)
Michael Bérubé's book Life As We Know It - A Father, A Family, and an Exceptional Child (1996) is available for loan to members from the DS NSW library.
Links to his writing and blogging activities on the subject of disability can be found in this post. His Penn State "people" page lists as a current project a new book "Disability and Narrative", something to look forward to. It also has a great photo of Michael with Jamie.
Friday, 31 July 2009
Disabled Accomplishments: a new blog
Jodi, aka Jo-Blogs is a young Sydney woman who has recently set up a new blog, Disabled Accomplishments, where she plans to "help others with disabilities find answers and solutions to questions that might come up by sharing my personal experiences".
She has provided links to her employer, Nova Employment, and their video clips showcasing the service, and has posted some interesting advertising clips under the post headings "Reverse Discrimination".
She has provided links to her employer, Nova Employment, and their video clips showcasing the service, and has posted some interesting advertising clips under the post headings "Reverse Discrimination".
Australia signs UN protocol giving right of appeal on migration
Disabled win right of appeal
Cynthia Banham. Diplomatic Correspondent
Sydney Morning Herald, July 30, 2009
Australia has cleared the way for people to take complaints about its disability discrimination policies to the United Nations – including prospective migrants with disabled children.
The Rudd Government will announce today that a year after signing the UN Convention on the Rights of People with Disabilities, it intends to accede to the Optional Protocol which establishes a complaints mechanism for breaches of the treaty.
People will only be able to take their complaints to the UN Disabilities Committee if they have exhausted all avenues of redress available in Australia.
The Attorney-General, Robert McClelland, will say in a speech today that ‘‘accession to the protocol … not only permits international scrutiny of our laws and practices, but also demonstrates our commitment to re-engage with the international community and to provide leadership in our region."
One potential area where Australia could come under scrutiny is its migration laws, which are exempt from its disability discrimination laws.
Article 18 of the UN Convention recognises the rights of people with disabilities to "liberty of movement, to freedom to choose their residence and to a nationality".
The Age (Melbourne) published a similar but longer article by the same reporter.
Cynthia Banham. Diplomatic Correspondent
Sydney Morning Herald, July 30, 2009
Australia has cleared the way for people to take complaints about its disability discrimination policies to the United Nations – including prospective migrants with disabled children.
The Rudd Government will announce today that a year after signing the UN Convention on the Rights of People with Disabilities, it intends to accede to the Optional Protocol which establishes a complaints mechanism for breaches of the treaty.
People will only be able to take their complaints to the UN Disabilities Committee if they have exhausted all avenues of redress available in Australia.
The Attorney-General, Robert McClelland, will say in a speech today that ‘‘accession to the protocol … not only permits international scrutiny of our laws and practices, but also demonstrates our commitment to re-engage with the international community and to provide leadership in our region."
One potential area where Australia could come under scrutiny is its migration laws, which are exempt from its disability discrimination laws.
Article 18 of the UN Convention recognises the rights of people with disabilities to "liberty of movement, to freedom to choose their residence and to a nationality".
The Age (Melbourne) published a similar but longer article by the same reporter.
Thursday, 30 July 2009
Library Thursdays: My Friend Isabelle and Taking Down Syndrome to School
One of the best books to help preschoolers understand children with Down syndrome is My Friend Isabelle by Eliza Woloson (Woodbine House, 2003). It shows two children--one with Down syndrome and one without, playing together and enjoying their similarities and their differences. Now a new downloadable version by PicPocket is available from iTunes for the iPhone or iPod Touch. The pictures are true to the book and each word is highlighted as it is spoken to help early readers follow along. [This version is not available from the library.]Click here for more information.
Another book to help school-age children understand Down syndrome has arrived in the library this week--Taking Down Syndrome to School by Jenna Glatzer, illustrated by Tom Dineen (JayJo Books 2002). The pictures are a bit cartoonish and it seems to dwell a bit too much on differences that may not always apply, but it covers some useful material as well. It talks about the use of the word "retard" and gives tips for teachers as well as a question and answer section for children.
To borrow either of these two books, just email us.
Wednesday, 29 July 2009
INTEGRATED DANCE WORKSHOP with Margot Politis
for people aged 18-30 with and without disabilitiesTUESDAY 18th AUGUST, 6pm – 9pm
$20 / $15 concession
FRASER STUDIOS
10-14 Kensington Street
Chippendale NSW 2008
15 places only, the majority of which are for those who identify as disabled
Sports CONNECT disability services education resource
From NSW Sport and Recreation:
Further to our Sport CONNECT State Meeting conducted in March 2009, the Australian Sports Commission (ASC), in partnership with NSW Sport and Recreation (and other state/territories) are developing the Sports CONNECT framework, which aims to increase the participation of people with disabilities in sport across Australia.
To support this process, a Sports CONNECT education resource, specifically targeting the disability services sector, is being developed. The aim is to develop resource material that will assist practitioners and service users in accessing opportunities in sport and physical recreation.
The ASC has appointed Ken Black to develop the Sports CONNECT educational resource. It is important that disability service providers, parents, carers and participants have the opportunity to input their ideas and suggestions about the format and content of the education resource.
NSW Sport and Recreation are looking for around 6 to 10 people for each meeting (meeting 1 - focuses on disability services and meeting 2 focuses on parents/carers/end users).
The details for meeting are:
Disability Service Meeting
DATE: Monday 10 August 2009
VENUE: NSW Sport and Recreation, Ken Brown Rooms, 6A Figtree Drive,
Sydney Olympic Park
PARKING: enter car park at 6A Figtree Drive, take a ticket and it will be validated during the meeting
TIME: 10am start (morning tea will be provided)
Parents/ Carers/ End Users
DATE: Monday 10 August 2009
VENUE: NSW Sport and Recreation, Ken Brown Rooms, 6A Figtree Drive,
Sydney Olympic Park
PARKING: enter car park at 6A Figtree Drive, take a ticket and it will be validated during the meeting
TIME: 1:30pm start (afternoon tea will be provided)
If you are available and interested in putting an expression of interest in attending the meeting with Ken to guide and advise the formulation of this new resource, please contact Kelly Oldfield on the details below by no later than the 31 July 2009:
Kelly Oldfield
Project Officer, Community Sport and Recreation
NSW Sport and Recreation
Phone: (02) 9006 3806 Fax: (02) 9006 3880
Address: Locked Bag 1422, Silverwater, NSW 2128
Please note change of email address
Email: kelly.oldfield@dasr.nsw.gov.au
Web: www.dsr.nsw.gov.au
Further to our Sport CONNECT State Meeting conducted in March 2009, the Australian Sports Commission (ASC), in partnership with NSW Sport and Recreation (and other state/territories) are developing the Sports CONNECT framework, which aims to increase the participation of people with disabilities in sport across Australia.
To support this process, a Sports CONNECT education resource, specifically targeting the disability services sector, is being developed. The aim is to develop resource material that will assist practitioners and service users in accessing opportunities in sport and physical recreation.
The ASC has appointed Ken Black to develop the Sports CONNECT educational resource. It is important that disability service providers, parents, carers and participants have the opportunity to input their ideas and suggestions about the format and content of the education resource.
NSW Sport and Recreation are looking for around 6 to 10 people for each meeting (meeting 1 - focuses on disability services and meeting 2 focuses on parents/carers/end users).
The details for meeting are:
Disability Service Meeting
DATE: Monday 10 August 2009
VENUE: NSW Sport and Recreation, Ken Brown Rooms, 6A Figtree Drive,
Sydney Olympic Park
PARKING: enter car park at 6A Figtree Drive, take a ticket and it will be validated during the meeting
TIME: 10am start (morning tea will be provided)
Parents/ Carers/ End Users
DATE: Monday 10 August 2009
VENUE: NSW Sport and Recreation, Ken Brown Rooms, 6A Figtree Drive,
Sydney Olympic Park
PARKING: enter car park at 6A Figtree Drive, take a ticket and it will be validated during the meeting
TIME: 1:30pm start (afternoon tea will be provided)
If you are available and interested in putting an expression of interest in attending the meeting with Ken to guide and advise the formulation of this new resource, please contact Kelly Oldfield on the details below by no later than the 31 July 2009:
Kelly Oldfield
Project Officer, Community Sport and Recreation
NSW Sport and Recreation
Phone: (02) 9006 3806 Fax: (02) 9006 3880
Address: Locked Bag 1422, Silverwater, NSW 2128
Please note change of email address
Email: kelly.oldfield@dasr.nsw.gov.au
Web: www.dsr.nsw.gov.au
Photography course: St Marys, September
Karelle Life Enrichment Service is offering a photography course to people with intellectual disability.
Wednesdays from 9.30 - 12.30
Commencing Wednesday 2nd September
Factory Training Centre, Unit 2/86 Glossop St St Marys
Cost: $5 per week to cover printing materials
Optional:
- trip to the Jenolan Caves ($55) on 3/11/2009
- 4 weeks of scrap booking a photo album for those most memorable
shots ($30)
Selected works from each participant will be mounted and displayed as part of ‘International Day of People with a Disability’ celebrations.
"Karelle prides itself on innovation and creativity in service and program delivery for clients with an intellectual disability and the Photography Course does not skimp in this area at all. Applications are open now so take advantage of this great course!"
For further details and registration, contact
Karelle Life Enrichment Service Inc.02 9832 1057
Tuesday, 28 July 2009
City to Surf update - 7 runners for DS NSW
Welcome, and many thanks to our 7th runner in the City to Surf to be held on Sunday week, 9th August, Andrew Rojas (click on his name to sponsor him, with proceeds coming to Down syndrome NSW)
Our other six registered runners are:
Our other six registered runners are:
Each has set up an Everyday Hero page to accept sponsorships. Just click on their names. The training is getting very serious now!
Molecular genetic analysis of Down syndrome: a review of the research
David Patterson is a Professor and the Director of External Relations, Eleanor Roosevelt Institute, University of Denver (Colorado), and one of the world's leading researchers in the molecular genetics of Down syndrome. The journal Human Genetics has recently published his excellent review of current research on the 21st chromosome, and current thinking on the complex interactions that are emerging:
Molecular genetic analysis of Down syndrome, Human Genetics. Volume 126, Number 1 / July, 2009 (published online on June 13)
The abstract of the paper and Dr Len Leshin's very useful commentary are available on Dr Leshin's website Down Syndrome: Health Issues. The full text can be read or downloaded as either a .pdf file or in html, from the journal's web page.
Molecular genetic analysis of Down syndrome, Human Genetics. Volume 126, Number 1 / July, 2009 (published online on June 13)
The abstract of the paper and Dr Len Leshin's very useful commentary are available on Dr Leshin's website Down Syndrome: Health Issues. The full text can be read or downloaded as either a .pdf file or in html, from the journal's web page.
Monday, 27 July 2009
Final report of National Health and Hospitals Reform Commission released today
After 16 months of submissions and deliberations, today saw the release of the final report the National Health and Hospitals Reform Commission.
Detailed analysis will be published widely over the next few days, as the potential impact on all Australians is assessed, and the Government's response emerges.
Jim Simpson at NSW CID has drawn our attention to these highlights today, that are of particular relevance to people with intellectual disability:
Detailed analysis will be published widely over the next few days, as the potential impact on all Australians is assessed, and the Government's response emerges.
Jim Simpson at NSW CID has drawn our attention to these highlights today, that are of particular relevance to people with intellectual disability:
Our recommendations on major system redesign in Chapter 4 will tackle some other important service gaps, but will do so through more fundamental system redesign in how we rebalance our investment to provide better connected services that take us from ‘cradle to grave’. In particular, we noted in our Interim Report the stark health and access inequalities for the more than 300,000 people living with an intellectual disability. Many of our reform recommendations, such as voluntary enrolment with a primary health care service as their ‘health care home’ and the broad purview of health promotion and prevention, will assist. Access to specialist medical services is also a major gap to be addressed for people living with an intellectual disability. (p. 68)
Acting early to keep our children healthy is one of the most powerful investments our society can make. The evidence is overwhelming. If we act early, we can prevent or reduce the magnitude of many disabilities, developmental delays, behavioural problems and physical and mental health conditions. Providing a stimulating balance of quality antenatal and early childhood health services, community and education services is vital for all children. For the most disadvantaged families, a healthy start to life is equivalent to providing a lifeline to help lift children out of generational cycles of poverty and unhealthy environments and give them the best health and life opportunities.
Our recommendations for a healthy start involve ensuring that children get access to the right mix of universal and targeted service[1]], based on their age and their individual health and social needs. What this would look like is as follows: .....
- Special needs: Children with particular health or developmental issues (as identified by the universal child and family health services or the family’s primary health care service) would be referred and eligible to get an enhanced package of care (for example, access to specialist services such as paediatricians, allied health, speech pathologists and other services required to manage disabilities or developmental delays). A care coordinator who is linked into a primary health care service would help support families of children with the most complex needs through coordinating and packaging the best range of services for these children and their families. (pp82-83)
We want to stress the value of prevention, health promotion and early intervention regardless of people’s age, health status or disability. It is important that everyone – including older people living in residential aged care or in the community, people with an intellectual disability, people living with a degenerative condition (such as multiple sclerosis) and people with other complex and chronic conditions – is given the opportunity to achieve their maximum health potential.(p85)
Recommendation 18:
We recommend that young families, Aboriginal and Torres Islander people and people with chronic and complex conditions (including people with a disability or a long-term mental illness) have the option of enrolling with a single primary health care service to strengthen the continuity, co-ordination and range of multidisciplinary care available to meet their health needs and deliver optimal outcomes. This would be the enrolled family or patient’s principal “health care home”. To support this, we propose that: there will be grant funding to support multidisciplinary services and care coordination for that service tied to levels of enrolment of young families and people with chronic and complex conditions; there will be payments to reward good performance in outcomes including quality and timeliness of care for the enrolled population and over the longer term, payments will be developed that bundle the cost of packages of primary health care over a course of care or period of time, supplementing fee-based payments for episodic care.
Recommendation 24:
We recommend that universal child and family health services provide a schedule of core contacts to allow for engagement with parents, advice and support, and periodic health monitoring (with contacts weighted towards the first three years of life). The initial contact would be universally offered as a home visit within the first two weeks following the birth. The schedule would include the core services of monitoring of child health, development and wellbeing; early identification of family risk and need; responding to identified needs; health promotion and disease prevention (for example, support for breastfeeding); and support for parenting. Where the universal child and family health services identify a health or developmental issue or support need, the service will provide or identify a pathway for targeted care, such as an enhanced schedule of contacts and referral to allied health and specialist services. Where a child requires more intensive care for a disability or developmental concerns, a care coordinator, associated with a primary health care service, would be available to coordinate the range of services these families often need.
Sunday, 26 July 2009
UK wedding - happy news
As a counterpoint to some of the grim events of the past week, here is news of the wedding of two young people with Down syndrome, celebrated recently in the UK - something we are hearing about more frequently.
Saturday, 25 July 2009
Troubled week in NSW and South Australia
Touch
Artworks in the limelight
Tracey Findley, Hornsby and Upper North Shore Advocate, Thursday 23rd July 2009
Handmade paper works of art will feature for the first time at Sunshine Homes' annual art exhibition.
Touch will include a variety of artworks created by the clients of Sunshine, a Pymble-based organisation that supports people with intellectual disabilities.
Gerry Foo, manager of fundraising and community engagement, said works of art from Sunshine's own papermaking studio will debut at this year's exhibition.
"Our papermaking studio is overseen by a staff member, but the works are entirely done by clients who reduce paper to pulp and from there create exquisite cards, gift-wrapping tissue and bookmarks for sale," she said.
"The process is fascinating and we're very proud to have our own studio and of the clients who participate in it.
"This year, they have extended their creativity to contribute artworks to the exhibition."
• Touch opens on July 31 at Ku-ring-gai Art Centre, 3 Recreation Ave, Roseville. It runs until August 21. Funds raised from art sold will go to clients and the ongoing work of Sunshine.
Welcome to Holland - Chinese translation
The Chinese Parents Association - Children with Disabilities has recently helped us out with a Chinese translation of “Welcome to Holland” by Emily Perl Kingsley. We are grateful for their help and collaboration in supporting families from Chinese backgrounds.
A number of resources about Down syndrome are available in Chinese. Arabic and Vietnamese, from our website, under the "Information" menu. Click on the "Arabic, Chinese and Vietnamese" resources sub-menu.
The Chinese Parents Association can be contacted on 02 9718 0236 or info@chineseparents.org
A number of resources about Down syndrome are available in Chinese. Arabic and Vietnamese, from our website, under the "Information" menu. Click on the "Arabic, Chinese and Vietnamese" resources sub-menu.
The Chinese Parents Association can be contacted on 02 9718 0236 or info@chineseparents.org
Friday, 24 July 2009
Reminder: registrations for Numicon workshops close 27th July
Don't forget that registrations close on Monday 27th July for Margi Leech's Numicon workshops for teachers and for parents in Sydney, Canberra and Brisbane during August.Dates, locations and links to fliers with registrations details are here.
These workshops are presented by Numicon NZ
Adolescent with complex disability assaulted
A very serious and disturbing attack, occurring in a NSW respite facility, has been reported on a 15 year old girl with a complex disability. The young woman was extremely vulnerable and was severely injured. It is reported that the person who attacked her was a 22 year old who also has an intellectual disability.
The respite facility is operated by the NSW Department of Ageing, Disability and Home Care.
The incident highlights very significant concerns about the provision of appropriate respite for children and adults, quality of supervision, safety and even the impact of privacy policies and law on what her family is allowed to know about what happened.
News reports include responses from the Minister for Disability Services, DADHC Director-General and the Opposition Spokesman on Disability.
Addition - The Minister for Disability Services (Paul Lynch) issued this media release today, 24/07/09:
Investigation into Bomaderry respite incident
Minister for Disability Services Paul Lynch said an investigation would be undertaken into the actions that led to a serious assault at a Bomaderry respite centre this week.
Mr Lynch said mistakes had been made that should not have happened.
“The actions that led to this terrible incident will be thoroughly investigated,” he said.
“The Director-General has stood aside two senior managers with oversight of respite care in the region pending a thorough investigation,” Mr Lynch said.
An initial report is expected to be available within a fortnight.
“Both myself and the Director-General are extremely disturbed by what has happened,” Mr Lynch said.
“I am assured the Department will provide whatever support it can to the young girl and her family,” he said.
“Every effort must be made to restore confidence and trust in our respite care service,” Mr Lynch said.
The respite facility is operated by the NSW Department of Ageing, Disability and Home Care.
The incident highlights very significant concerns about the provision of appropriate respite for children and adults, quality of supervision, safety and even the impact of privacy policies and law on what her family is allowed to know about what happened.
News reports include responses from the Minister for Disability Services, DADHC Director-General and the Opposition Spokesman on Disability.
Addition - The Minister for Disability Services (Paul Lynch) issued this media release today, 24/07/09:
Investigation into Bomaderry respite incident
Minister for Disability Services Paul Lynch said an investigation would be undertaken into the actions that led to a serious assault at a Bomaderry respite centre this week.
Mr Lynch said mistakes had been made that should not have happened.
“The actions that led to this terrible incident will be thoroughly investigated,” he said.
“The Director-General has stood aside two senior managers with oversight of respite care in the region pending a thorough investigation,” Mr Lynch said.
An initial report is expected to be available within a fortnight.
“Both myself and the Director-General are extremely disturbed by what has happened,” Mr Lynch said.
“I am assured the Department will provide whatever support it can to the young girl and her family,” he said.
“Every effort must be made to restore confidence and trust in our respite care service,” Mr Lynch said.
Thursday, 23 July 2009
Research sheds lights on cause of some chromosome disorders such as Down syndrome
Scientists have a better understanding of what causes an abnormal number of chromosomes in offspring, a condition called aneuploidy that encompasses the most common genetic disorders in humans, such as Down syndrome, and is a leading cause of pregnancy loss.
...... The research sheds light on the genetic underpinnings of aneuploidy, a condition marked by having an abnormal number of chromosomes. It is the underlying cause of many genetic diseases – such as Down syndrome, Edwards syndrome, and Patau syndrome – as well as many cases of pregnancy loss.
Click here to read the EurekAlert! published on 17th July 2009, and here for the online publication in the Proceedings of the National Academy of Science of the United States of America, with links to purchase the full text of the research report.
...... The research sheds light on the genetic underpinnings of aneuploidy, a condition marked by having an abnormal number of chromosomes. It is the underlying cause of many genetic diseases – such as Down syndrome, Edwards syndrome, and Patau syndrome – as well as many cases of pregnancy loss.
Click here to read the EurekAlert! published on 17th July 2009, and here for the online publication in the Proceedings of the National Academy of Science of the United States of America, with links to purchase the full text of the research report.
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