Peak body National Disability Services has published an information sheet about provisions for people with disabilities wishing to attend World Youth Day Events in Sydney in July.
Click here for the information sheet, which includes links to other services and supports that people with disabilities might require to attend events.
To keep up-to-date with changes for the World Youth Day 2008 events and to download Disability Information Fact Sheets go to: www.wydca.nsw.gov.au/whats-new
For all disability information enquiries leading up to and during World Youth Day 2008 please contact:
IDEAS Disability Info Line
Freecall: 1800 029 904
Email: ideasmetro@ideas.org.au
Fax: 02 9657 1793
TTY: 02 6947 3377
Monday, 30 June 2008
Sunday, 29 June 2008
Online magazines - a wealth of reading freely available
Down Syndrome NSW quarterly Newsletter and monthly Update are both made available online as well as in print. Many other Newsletter likely to be of interest to those caring for a person with Down syndrome are now available online. Here are a few of our local and international favourites:
Accessible Arts Newsletter for July is available to read here. It includes news about events and programs across NSW, including July and August dates for regional visits.
Early Links publishes information about research and practice in early childhood intervention of interest to professionals and to families. It is published online twice a year, by the Macquarie University Special Education Centre. The current issue is available here.
Carers NSW e-Bulletin is published online monthly, with new of interest to anyone in a caring role, including parents and other family carers of people of all ages with disabilities, and to young carers. Click here for the Carers NSW website and find the "e-bulletin" link under the "Information and Resources" menu.
Disability Solutions is and enduring favourite - more than six years of very good reading is indexed here.
Down Syndrome Education International now publishes most of its very high quality periodicals online.
All are freely available - a public library in your computer.
Down Syndrome NSW Annual General Meeting 2008
will be held at2.30 pm on Saturday 30 August 2008
The Ambassador Room, Burwood RSL Club
96 Shaftesbury Road, Burwood
At the meeting the Annual Financial Statements will be presented and elections willbe held for membership of the Management Committee.
Light refreshments will be provided.
Click here to download a Nomination Form for membership of the Committee, or phone the DS NSW office (02 9683 1900) to request a Nomination Form to be mailed to you.
The Closing Date for nominations is 1 August 2008
There is no charge but booking is required for catering:
You can register online here, or phone 02 9683 1900, email executiveofficer@dsansw.org.au
Saturday, 28 June 2008
A little more - from Jennifer Graf Groneberg
Jennifer Graf Groneberg (author of Roadmap to Holland) has written another insightful post for Parent Dish, that you can read here. She describes an early morning scene in her home, nothing much out of the ordinary, but it leads to more significant observations about how her perspective has changed since the birth of her twins, Avery and Bennett. Avery has Down syndrome.
I've been Avery's mama for 5 years already, and it's not just Holland I see. These days, I'm more likely to notice the man walking with the limp; or the young woman with rigidity in her muscles; or the child overwhelmed by sounds. The causes for such things, or the names for them, are not important to me - what I see is the man, the woman, the child. I see what's different, but I also see what we share.
Jennifer's own blog Pinwheels is linked from our Blogroll (right column on this page). Her book Roadmap to Holland is available for DS NSW members to borrow from our library.
I've been Avery's mama for 5 years already, and it's not just Holland I see. These days, I'm more likely to notice the man walking with the limp; or the young woman with rigidity in her muscles; or the child overwhelmed by sounds. The causes for such things, or the names for them, are not important to me - what I see is the man, the woman, the child. I see what's different, but I also see what we share.
Jennifer's own blog Pinwheels is linked from our Blogroll (right column on this page). Her book Roadmap to Holland is available for DS NSW members to borrow from our library.
A tribute to Harriet McBryde Johnson
Many tributes have written to Harriet McBryde Johnson, a prominent US lawyer and disability rights activist who died earlier in June. She was well known for taking on philosopher Peter Singer over his views about killing babies with disabilities, and other very up-front opinions. Yesterday's Wall Street Journal published Christine Rosen's reflections on Johnson's activism, and her stance on disability as part of the human condition, under the title A LIfe Worth Living. She draws on the ongoing debate about prenatal testing for Down syndrome to illustrate how Harriet Johnson challenged strongly held views about the rights of people with disabilities to even be alive.
Harriet Johnson's response to Peter Singer's views are encapsulating in her well-known New York Times article, Unspeakable Conversations (16/3/2003), which Rosen describes as "Thankfully free of the ponderous cant that infects so much of bioethics...."
Both articles are well worth reading and re-reading.
Harriet Johnson's response to Peter Singer's views are encapsulating in her well-known New York Times article, Unspeakable Conversations (16/3/2003), which Rosen describes as "Thankfully free of the ponderous cant that infects so much of bioethics...."
Both articles are well worth reading and re-reading.
Monday, 16 June 2008
New research on the brain in Down syndrome + autism
This news report was published in Ability Magazine, Vol 2008 April/May (the Sandra Lee Issue). The reference to the research paper is given below.
Correlations of Autistic Behaviors Shown in Children with Down Syndrome In a continuation of his research looking at children with a co-diagnosis of both autism spectrum disorder (ASD) and other well-known genetic disorders, Dr. Walter E. Kaufmann and colleagues recently published a study that examined the difference in brain structure between children with either Down syndrome alone and children with both Down syndrome and ASD. Dr. Kaufmann and his research team at the Center for Genetic Disorders of Cognition and Behavior (GCB Center) at the Kennedy Krieger Institute believe this will provide more clues to the cause of autism, and lead to better diagnosis and care of children with both Down syndrome and ASD.
The study, which appears in the online journal NeuroReport, used anatomic MRIs to compare the brain scans of children with Down syndrome to children with both Down syndrome and autism, as well as a control group of typically developing children. The study found that the brains of children with a co-diagnosis had significantly more white matter in the brainstem and cerebellum when compared to children with Down syndrome alone. The data also showed that children with both disorders exhibited an accelerated brain growth between the ages of two and five years-old. The volume of white matter in the children with a co-diagnosis tended to decrease slightly with age, but the volumes of white matter remained relatively constant in the group with Down syndrome alone.
The study supports the theory that the underlying cause of autism lies in the cerebellum, particularly the enlargement of the cerebellum due to increased white matter. The findings also suggest that the underlying mechanisms of ASD in Down syndrome may be shared, at least in part, with those in autism alone.
The early pattern of accelerated brain growth in childhood with Down syndrome and a co-diagnosis of ASD resembles the pattern of head and brain growth typically observed in children with autism alone and differs from children with Down syndrome alone. These differences make it important for researchers conducting brain imaging studies on Down syndrome to carefully evaluate the presence of ASD, as autism in Down syndrome may often go undiagnosed.
Perhaps most importantly, the increased white matter in individuals with Down syndrome and a co-diagnosis of autism represents a distinguishing feature that is associated with abnormal behaviors which are typically seen in children with either disorder, namely repetitive motor movements known as stereotypies.
Reference:
Click here for a previous post an information about Down syndrome+ autism for parents and professionals
Correlations of Autistic Behaviors Shown in Children with Down Syndrome In a continuation of his research looking at children with a co-diagnosis of both autism spectrum disorder (ASD) and other well-known genetic disorders, Dr. Walter E. Kaufmann and colleagues recently published a study that examined the difference in brain structure between children with either Down syndrome alone and children with both Down syndrome and ASD. Dr. Kaufmann and his research team at the Center for Genetic Disorders of Cognition and Behavior (GCB Center) at the Kennedy Krieger Institute believe this will provide more clues to the cause of autism, and lead to better diagnosis and care of children with both Down syndrome and ASD.
The study, which appears in the online journal NeuroReport, used anatomic MRIs to compare the brain scans of children with Down syndrome to children with both Down syndrome and autism, as well as a control group of typically developing children. The study found that the brains of children with a co-diagnosis had significantly more white matter in the brainstem and cerebellum when compared to children with Down syndrome alone. The data also showed that children with both disorders exhibited an accelerated brain growth between the ages of two and five years-old. The volume of white matter in the children with a co-diagnosis tended to decrease slightly with age, but the volumes of white matter remained relatively constant in the group with Down syndrome alone.
The study supports the theory that the underlying cause of autism lies in the cerebellum, particularly the enlargement of the cerebellum due to increased white matter. The findings also suggest that the underlying mechanisms of ASD in Down syndrome may be shared, at least in part, with those in autism alone.
The early pattern of accelerated brain growth in childhood with Down syndrome and a co-diagnosis of ASD resembles the pattern of head and brain growth typically observed in children with autism alone and differs from children with Down syndrome alone. These differences make it important for researchers conducting brain imaging studies on Down syndrome to carefully evaluate the presence of ASD, as autism in Down syndrome may often go undiagnosed.
Perhaps most importantly, the increased white matter in individuals with Down syndrome and a co-diagnosis of autism represents a distinguishing feature that is associated with abnormal behaviors which are typically seen in children with either disorder, namely repetitive motor movements known as stereotypies.
Further research on autism in Down syndrome as well as autism in other conditions may help clarify the causes and functional consequences of autism in the general population.
http://abilitymagazine.com/news_Autistic_Down.html
accessed 14/06/2008
Reference:
Carter, John, George T. Capone, and Walter E. Kaufmann, Neuroanatomic correlates of autism and stereotypy in children with Down syndrome, Clinical Neuroscience and Neuropathology, Vol 19 No 6 16 April 2008, pp 653 - 656
Click here for a previous post an information about Down syndrome+ autism for parents and professionals
Sunday, 15 June 2008
Diana and Kathy - more powerful advocates
This new documentary looks interesting - two feisty women who have learned to speak up for themselves, and work as a formidable team:
Diana Braun and Kathleen Conour approached Alice Elliott at the 2001 National Arc Convention, and asked her to make a documentary about them. ...... The result is Body & Soul: Diana & Kathy.
Diana and Kathy are friends and advocates, who continue to explore innovative solutions for people with disabilities. From their experience living outside of institutions for 35 years, they became advocates for choices in housing for people with disabilities.
Read reviews, more about Diana and Kathy, and more about the production here.
The film is currently on the film festival circuit in the US. We're intrigued, and will get a copy into our library as soon as the full package of DVD with extras and study guides is available.
Diana Braun and Kathleen Conour approached Alice Elliott at the 2001 National Arc Convention, and asked her to make a documentary about them. ...... The result is Body & Soul: Diana & Kathy. Diana and Kathy are friends and advocates, who continue to explore innovative solutions for people with disabilities. From their experience living outside of institutions for 35 years, they became advocates for choices in housing for people with disabilities.
Read reviews, more about Diana and Kathy, and more about the production here.
The film is currently on the film festival circuit in the US. We're intrigued, and will get a copy into our library as soon as the full package of DVD with extras and study guides is available.
Saturday, 14 June 2008
SMH feature on Carer-Advocate, Sue Pieters-Hawk
Australians are very familiar with the story of Hazel Hawke, the former wife of an ex-Prime Minister. Her daughter , Sue now has a national role as a carer advocate, as well as being her mother's primary carer. Bridget Delaney profiles Sue Pieters-Hawke in today's Sydney Morning Herald, and focuses on how she keeps herself fit for caring. This extract is the the introductory paragraphs:..... Sue Pieters-Hawke is a carer's advocate, recently appointed chairwoman of the National Advisory Committee on Dementia for the Minister for Ageing, and is primary carer to her mother Hazel, who has Alzheimer's disease. Pieters-Hawke wrote of the illness, diagnosed in 2001, and her mother's life in the best-selling book Hazel's Journey.
She believes carers benefit from "a sense of humour [which] nearly always helps. It's black humour, self-deprecatory, sense of humour being able to vent. It lifts endorphins and reduces stress."
There was a recent Australian study conducted that showed "carers as a cohort have the lowest well-being and are at high risk of disease and depression". To combat this "people who are carers need things that stand outside it; faith, their own identity and activities. You can, for example, lose yourself in young motherhood but hopefully there's the compensatory joy of a baby but if you have been caring for someone in decline then it's very natural and easy to be disheartened by that."
So what can carers do to develop separate interests? "Time out, time out, time out … is really important. Take it physically, and generate it mentally and emotionally. Friends, interests and faith are important." Pieters-Hawke's interests include cooking, listening to music and gardening ("watching things grow and die and flower. I stand at the window and stare at it and enjoy it") but faith "of one kind or another" has been a constant in her life.
It has given her meaning and sustenance and "the capacity to live well with uncertainty," she says, before quoting Helen Keller. "'Human beings seek safety and certainty, and there is no such thing.' People try and get it by placing values on material goods and hedonism. It doesn't just fall out of the sky." Instead Buddhism has helped her navigate through much of life's uncertainty......
Sydney Morning Herald, 14th June 2008
Read the full text of the Herald article here.
Minister for Ageing's Press Release announcing her Advisroy Board on Dementia, co-chaired by Sue Pieters-Hawke and Sall-Anne Atkinson.
Click here to read Ashley Hall's report (ABC News) of his interview with Sue Pieters-Hawke on her appointment to the Minister's Advisory Group.
Friday, 13 June 2008
New from Scope Victoria
Scope Victoria provides disability services throughout Victoria to thousands of children and adults with physical and multiple disabilities. Scope is committed to overcoming the personal, structural and attitudinal barriers that prevent those with disability from participating in community life and works to make our community more inclusive, more accessible and more welcoming.
As part of that commitment, Scope produces a range of resources useful to people with all kinds of disabilities - here are two new publications, both freely available, that will be useful for people with Down syndrome:
Nursery Rhymes to Sing See and Sign are FREE downloadable, web-based communication resources for ALL young children. It includes resources for 14 favourite Nursery Rhymes. It has a particular focus on communication strategies known to help communication and language development in children with communication difficulties. Difficulties may include delayed speech, speech that is hard to understand, problems with comprehension and difficulties with concentration and engagement. Being unable to communicate and participate impacts on a child’s overall development, well being and quality of life. For more information, and to download Nursery Rhymes, click here.
Supporting People With Disabilities Coping With Grief And Loss: An Easy-To-Read Booklet The aim of this booklet is: To provide people with disabilities and their support people with an overview and an understanding of the grief process To highlight the range of needs of people with disabilities who may be grievingTo provide effective strategies for supporting people with disabilities in dealing with grief and lossThis booklet is organised in two sections. The first section has been developed for people with disabilities themselves, written in easy English and using pictures. This section provides information about grief and loss, and strategies for dealing with grief, in an easy-to-read format. The second section has been developed for people who support people with disabilities to deal with grief and loss. They are written as guidelines that may be helpful to families and service providers who wish to actively assist the grieving person with disability.
Supporting People With Disabilities Coping With Grief And Loss, PDF Format (40 pages,1079 KB)
As part of that commitment, Scope produces a range of resources useful to people with all kinds of disabilities - here are two new publications, both freely available, that will be useful for people with Down syndrome:
Nursery Rhymes to Sing See and Sign are FREE downloadable, web-based communication resources for ALL young children. It includes resources for 14 favourite Nursery Rhymes. It has a particular focus on communication strategies known to help communication and language development in children with communication difficulties. Difficulties may include delayed speech, speech that is hard to understand, problems with comprehension and difficulties with concentration and engagement. Being unable to communicate and participate impacts on a child’s overall development, well being and quality of life. For more information, and to download Nursery Rhymes, click here.Supporting People With Disabilities Coping With Grief And Loss: An Easy-To-Read Booklet The aim of this booklet is: To provide people with disabilities and their support people with an overview and an understanding of the grief process To highlight the range of needs of people with disabilities who may be grievingTo provide effective strategies for supporting people with disabilities in dealing with grief and lossThis booklet is organised in two sections. The first section has been developed for people with disabilities themselves, written in easy English and using pictures. This section provides information about grief and loss, and strategies for dealing with grief, in an easy-to-read format. The second section has been developed for people who support people with disabilities to deal with grief and loss. They are written as guidelines that may be helpful to families and service providers who wish to actively assist the grieving person with disability.
Supporting People With Disabilities Coping With Grief And Loss, PDF Format (40 pages,1079 KB)
Wednesday, 11 June 2008
Children with Down Syndrome sleep poorly and have more fragmented sleep
American Academy of Sleep Medicine, Public release date: 10-Jun-2008
Contact: Kathleen McCann kmccann@aasmnet.org
Note: this study is not about obstructive sleep apnoea, which is very common in children with Down syndrome, but the quality of sleep compared with other children when sleep disordered breathing has been accounted for.
Children with Down Syndrome sleep poorly, with more fragmented sleep and frequent awakenings compared to typically developing children, according to a research abstract that will be presented on Tuesday at SLEEP 2008, the 22nd Annual Meeting of the Associated Professional Sleep Societies (APSS).
The study, authored by Nicole N. Phillips, MD, of the University of Michigan, focused on 38 children with Down Syndrome, whose sleep study results were identified and matched to those of 38 typically developing children presenting to the Sleep Disorders Center. Children were matched for severity of underlying sleep disordered breathing. The average age of all the children was seven years.
As a whole, children with Down Syndrome spent more time awake after sleep onset and had more fragmented sleep compared to typically developing children. Children with Down Syndrome in the five-to-nine-year year age group exhibited lower sleep efficiency, less total sleep time, spent more time awake after sleep onset, spent more time in a lighter sleep stage (stage 1 sleep), and had less REM sleep compared to typically developing children. Also noted was a trend characterized by less REM sleep and more slow wave sleep with age.
According to Dr. Phillips, the findings of this study suggest that children with Down Syndrome sleep poorly and have more fragmented sleep compared to typically developing children, which may be independent of underlying sleep disordered breathing. Children with Down Syndrome may also have an altered sleep architecture characterized by less total sleep time, more stage 1 sleep, and less REM sleep, said Dr. Phillips, adding that this sleep pattern may emerge during childhood and may reflect a developmental phenotype in this pediatric population. Poor sleep quality and decreased amounts of REM sleep may further impair cognitive, behavioral, and physical growth, noted Dr. Phillips.
“A better understanding and enhanced awareness of the sleep characteristics and sleep architecture of children with Down Syndrome will allow earlier detection of impaired sleep and implementation of treatment strategies,” said Dr. Phillips. “Improving overall sleep quality will be a key ingredient for optimization of physical and cognitive functioning in this pediatric population.”
It is recommended that school-aged children get between 10-11 hours of nightly sleep.
The American Academy of Sleep Medicine (AASM) offers some tips to help your child sleep better:
Follow a consistent bedtime routine. Set aside 10 to 30 minutes to get your child ready to go to sleep each night.
Establish a relaxing setting at bedtime.
Interact with your child at bedtime. Don’t let the TV, computer or video games take your place.
Keep your children from TV programs, movies, and video games that are not right for their age.
Do not let your child fall asleep while being held, rocked, fed a bottle, or while nursing.
At bedtime, do not allow your child to have foods or drinks that contain caffeine. This includes chocolate and sodas. Try not to give him or her any medicine that has a stimulant at bedtime. This includes cough medicines and decongestants.
It is important to make sure that your child gets enough sleep and sleeps well. The value of sleep can be measured by your child’s smiling face, happy nature and natural energy. A tired child may have development or behavior problems. A child’s sleep problems can also cause unnecessary stress for you and the other members of your family.
Parents who suspect that their child might be suffering from a sleep disorder are encouraged to consult with their child’s pediatrician or a sleep specialist.
More information about “children and sleep” is available from the AASM
SleepEducation.com, a patient education Web site created by the AASM, provides information about various sleep disorders, the forms of treatment available, recent news on the topic of sleep, sleep studies that have been conducted and a listing of sleep facilities.
Click here for information from the Australasian Sleep Association.
Tuesday, 10 June 2008
Commonwealth Government announces Disability Investment GroupThe
Australian Government has established a Disability Investment Group to explore innovative funding ideas from the private sector that will help people with disability and their families' access greater support and plan for the future.
Parliamentary Secretary for Disabilities and Children's Services, Bill Shorten, today said the group would encourage the private sector to play a greater role in the disability sector.
"The Disability Investment Group will look closely at identifying and developing options for private investment in housing, education, employment, equipment and other support for people with disability," Mr Shorten said.
"There is a real role the private sector can play here, and it is the Disability Investment Group's job to find out what barriers are stopping private investment, and what can be done to remove them."
- For the full text of the initial Press Release from Parliamentary Secretary for Disabilities and Children's Services, Bill Shorten, click here.
- Click here for the Terms of Reference of the Disability Investment Group and for a list of the members.
Monday, 9 June 2008
Down Syndrome and Autism Information Center - new web resources
The DSAIC now has a "Valuable Articles" section available. This section has copies of articles we have permission to share, or links to articles. All have been reviewed for usefulness for families of people who have Down syndrome and and ASD or another diagnosis.
The DSAIC website is part of Joan Medlen's Creating Solutions group, that also publishes the free 0n-line magazine, Disability Solutions, one of our most-used resources over many years. Well worth checking out.
Kellie's Book - the Art of the Impossible
"Hi. My name is Kellie. This is my life story. I wrote this book and made all of the drawings."
So begins a very special book, "Kellie’s Book — The Art of the Impossible," by Kellie Greenwald (a 30 yr old woman who has Down syndrome). Naples Daily News, Florida, Sunday 8th June 2008
You can read more about Kellie and see sample pages from her book, by clicking here. Click the "enlarge photos" button for a better view of the slide show.
The DSAIC website is part of Joan Medlen's Creating Solutions group, that also publishes the free 0n-line magazine, Disability Solutions, one of our most-used resources over many years. Well worth checking out.Kellie's Book - the Art of the Impossible
"Hi. My name is Kellie. This is my life story. I wrote this book and made all of the drawings."So begins a very special book, "Kellie’s Book — The Art of the Impossible," by Kellie Greenwald (a 30 yr old woman who has Down syndrome). Naples Daily News, Florida, Sunday 8th June 2008
You can read more about Kellie and see sample pages from her book, by clicking here. Click the "enlarge photos" button for a better view of the slide show.
Saturday, 7 June 2008
Strong women, powerful advocates - where would we be without them?
The long lives of two mothers, both mothers of daughters with Down syndrome born in the 1940s and 1950s, were celebrated in press reports this week of their deaths at 95 and 87 respectively. The tributes highlight their powerful advocacy, not just for their own daughters, but for all people with disabilities, They would probably never have met, but they had much in common. Their stories are well worth the telling.
- Edna Margaret Glassborow, BEM, The Age, Melbourne
- Mary Lee Brookshire, The Atlanta Journal-Constitution
What would our family lives be like today without their groundbreaking leadership, and others like them, who changed our world, one family at a time? Their legacy is our children's inheritance.
Life enriched by care
Sydney Morning Herald, Saturday 7th June 2008
Her daughter's disability has helped the Liberal senator Sue Boyce become a better mother, she tells Tim Dick.
To get to her literacy course Joanna Boyce needed to take the ferry. Her mother, Sue Boyce, showed her how to use it on her way to work. She showed her the next day, too, and the next, and every morning for the next week or so.
The training wheels stayed on not because Joanna needed them but because her mother enjoyed the morning ride, and when the Liberal senator for Queensland is back from Canberra - and Joanna is not doing the shredding in the Opposition whip's office - they still ride the Brisbane CityCat.
Joanna, 24, is the youngest of the three Boyce children and the only one still at home. She has Down syndrome.
Read the full text of Tim Dick's article here.
Publication of experiences such as Senator Boyce's are a nice counterpoint to articles earlier this week in the US financial press highlighting the 22% rise is Sequenom shares that followed the release of early results of a clinical trial for the company's non-invasive diagnostic prenatal test for Down syndrome.
Sequenom plans to begin commercial release of the test in 2009. Given the very high rates of termination (80 - 90%) reported when a definitive prenatal diagnosis is available, it would be expected that the live birth incidence of babies with Down syndrome is likely to fall markedly once such tests are offered to all pregnant women.
Since many parents report receiving little or no balanced information about raising a child with Down syndrome along with a prenatal diagnosis, organisations worldwide such as Down Syndrome NSW are making it a renewed priority to help fill that gap, believing that parents need more information to make informed decisions.
Patricia Bauer has included press reports about the Sequenom trial and results in her listings for 4th and 5th June.
Her daughter's disability has helped the Liberal senator Sue Boyce become a better mother, she tells Tim Dick.
To get to her literacy course Joanna Boyce needed to take the ferry. Her mother, Sue Boyce, showed her how to use it on her way to work. She showed her the next day, too, and the next, and every morning for the next week or so.
The training wheels stayed on not because Joanna needed them but because her mother enjoyed the morning ride, and when the Liberal senator for Queensland is back from Canberra - and Joanna is not doing the shredding in the Opposition whip's office - they still ride the Brisbane CityCat.Joanna, 24, is the youngest of the three Boyce children and the only one still at home. She has Down syndrome.
Read the full text of Tim Dick's article here.
Publication of experiences such as Senator Boyce's are a nice counterpoint to articles earlier this week in the US financial press highlighting the 22% rise is Sequenom shares that followed the release of early results of a clinical trial for the company's non-invasive diagnostic prenatal test for Down syndrome.
Sequenom plans to begin commercial release of the test in 2009. Given the very high rates of termination (80 - 90%) reported when a definitive prenatal diagnosis is available, it would be expected that the live birth incidence of babies with Down syndrome is likely to fall markedly once such tests are offered to all pregnant women.
Since many parents report receiving little or no balanced information about raising a child with Down syndrome along with a prenatal diagnosis, organisations worldwide such as Down Syndrome NSW are making it a renewed priority to help fill that gap, believing that parents need more information to make informed decisions.
Patricia Bauer has included press reports about the Sequenom trial and results in her listings for 4th and 5th June.
Friday, 6 June 2008
People with disabilities, carers and the NSW Budget 2008-2009
Most of what is in the 2008-2009 NSW Budget that impacts directly on people with disabilities and their carers was known before the Budget's release, but it did include a 6.9% increase in funding.
Analyses of the Budget's provision for people with disabilities and their carers is available from:
NCOSS 's analysis of the Department of Ageing, Disability and Home Care section of the NSW Budget:
· Budgeted allocation to DADHC of $2billion in 2008-09, a 6.9% increase or $130million more than last year. Over $1.2billion of this will be provided to NGOs in grants and subsidies.
· Home & Community Care (HACC): growth funding to the NSW HACC Program will be around 7.2% or $37.2million in 2008-09. This allocation appears to match the Commonwealth growth allocation announced in the Federal Budget. 2008-09 is the first year of the HACC Triennial Plan, now awaiting Commonwealth approval. The priorities for this Plan are people with dementia, people who are financially disadvantaged, people who are socially excluded or locationally disadvantaged, people from culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander people, people in remote and isolated areas. There are 7 strategic directions for this Triennial Plan: simplifying access strategies,-using the Hunter Demonstration Project; better outcomes for clients and value for money; streamlined risk based strategies for performance quality assurance; building an evidence base for HACC; innovative approaches to service delivery; improvements to the Minimum Data Set; equitable allocations across NSW. Due to the weight of escalating demand, NCOSS proposed an increase by NSW to HACC of 20% in 2008-09 which has not been met.
· The Home Care Service of NSW will receive $207million in 2008-09, an increase of 2.5% or $5m. This will provide 4 million hours to 42,000 people per month. There will be an independent review of the Referral and Assessment Centre (RAC) and implemented improvements as well as another Customer Satisfaction Survey in 2009. The Home Care Service receives 32% of the HACC budget in NSW.
· Disability Services: The third year of the Stronger Together Disability Plan has been fully funded at $89.3 million in 2008-09. Increases this year include $4.6million for therapy services, $9.1million for post school programs for 1000 new school leavers, $2million for 400 Intensive Support Packages for young people and families, $1.5m for intensive assistance with challenging behaviours to 410 children and families $7.5m for 100 new Attendant Care places, $5.1m for an extra 340 day program places, $7.6m for younger people in nursing homes, $38.7m for an additional 280 supported accommodation places for adults with disability. NCOSS believes that all new supported accommodation places must be delivered in accordance with the NSW Disability Services Act and not through the re-development of disability institutions or large residential centres. There are still 2400 people with disability in institutions in NSW. NCOSS welcomes the continued implementation under the Stronger Together Plan, but proposed a raft of spending measures totalling over $62.5m in 2008-09 so that NSW can move away from crisis service provision to people with disability.
· Ageing Program: Funding to the Ageing Program has been maintained at $5.8m in this budget. There have been no increases to this program, despite the rapid ageing of the population, in several years. The NSW Government’s commitment to older people is fully described in the NSW Towards 2030 Plan, which sets out action priorities to prepare for the challenge of population ageing. In its Pre-Budget Submission, NCOSS proposed an allocation of $4m to support positive ageing in NSW.
· Capital Expenditure: In 2008-09 DADHC will spend $115.2million in capital expenditure in both HACC and Disability services programs. This includes $35 million for new accommodation facilities under Stronger Together, $25.8m for the redevelopment of large residential centres at Grosvenor, Lachlan and Peat Island, $35m for improvements and replacements of accommodation for people with disability.
· Commonwealth State Territory Disability Agreement: While an interim arrangements were agreed at the Disability Ministers’ meeting of May 30, the current CSTDA has been extended to end 2008 pending negotiations. The previously announced Disability Assistance Package will now be allocated under the new CSTDA and a National Disability Strategy is under development. In the meantime, NSW will receive 33.7% of the Commonwealth’s new $100m capital allocation for supported accommodation for 309 people with disability. Details have not yet been finalised about how this funding will be delivered.
· Workforce Strategy: NDS NSW has been allocated $3.3million to develop a workforce strategy to deal with workforce recruitment, qualifications and shortages. This will cover both non-government and government workforces and will include the disability and HACC sectors. Contracts for this work are currently being finalised so more information will be available shortly.
Analyses of the Budget's provision for people with disabilities and their carers is available from:
NCOSS 's analysis of the Department of Ageing, Disability and Home Care section of the NSW Budget:
· Budgeted allocation to DADHC of $2billion in 2008-09, a 6.9% increase or $130million more than last year. Over $1.2billion of this will be provided to NGOs in grants and subsidies.
· Home & Community Care (HACC): growth funding to the NSW HACC Program will be around 7.2% or $37.2million in 2008-09. This allocation appears to match the Commonwealth growth allocation announced in the Federal Budget. 2008-09 is the first year of the HACC Triennial Plan, now awaiting Commonwealth approval. The priorities for this Plan are people with dementia, people who are financially disadvantaged, people who are socially excluded or locationally disadvantaged, people from culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander people, people in remote and isolated areas. There are 7 strategic directions for this Triennial Plan: simplifying access strategies,-using the Hunter Demonstration Project; better outcomes for clients and value for money; streamlined risk based strategies for performance quality assurance; building an evidence base for HACC; innovative approaches to service delivery; improvements to the Minimum Data Set; equitable allocations across NSW. Due to the weight of escalating demand, NCOSS proposed an increase by NSW to HACC of 20% in 2008-09 which has not been met.
· The Home Care Service of NSW will receive $207million in 2008-09, an increase of 2.5% or $5m. This will provide 4 million hours to 42,000 people per month. There will be an independent review of the Referral and Assessment Centre (RAC) and implemented improvements as well as another Customer Satisfaction Survey in 2009. The Home Care Service receives 32% of the HACC budget in NSW.
· Disability Services: The third year of the Stronger Together Disability Plan has been fully funded at $89.3 million in 2008-09. Increases this year include $4.6million for therapy services, $9.1million for post school programs for 1000 new school leavers, $2million for 400 Intensive Support Packages for young people and families, $1.5m for intensive assistance with challenging behaviours to 410 children and families $7.5m for 100 new Attendant Care places, $5.1m for an extra 340 day program places, $7.6m for younger people in nursing homes, $38.7m for an additional 280 supported accommodation places for adults with disability. NCOSS believes that all new supported accommodation places must be delivered in accordance with the NSW Disability Services Act and not through the re-development of disability institutions or large residential centres. There are still 2400 people with disability in institutions in NSW. NCOSS welcomes the continued implementation under the Stronger Together Plan, but proposed a raft of spending measures totalling over $62.5m in 2008-09 so that NSW can move away from crisis service provision to people with disability.
· Ageing Program: Funding to the Ageing Program has been maintained at $5.8m in this budget. There have been no increases to this program, despite the rapid ageing of the population, in several years. The NSW Government’s commitment to older people is fully described in the NSW Towards 2030 Plan, which sets out action priorities to prepare for the challenge of population ageing. In its Pre-Budget Submission, NCOSS proposed an allocation of $4m to support positive ageing in NSW.
· Capital Expenditure: In 2008-09 DADHC will spend $115.2million in capital expenditure in both HACC and Disability services programs. This includes $35 million for new accommodation facilities under Stronger Together, $25.8m for the redevelopment of large residential centres at Grosvenor, Lachlan and Peat Island, $35m for improvements and replacements of accommodation for people with disability.
· Commonwealth State Territory Disability Agreement: While an interim arrangements were agreed at the Disability Ministers’ meeting of May 30, the current CSTDA has been extended to end 2008 pending negotiations. The previously announced Disability Assistance Package will now be allocated under the new CSTDA and a National Disability Strategy is under development. In the meantime, NSW will receive 33.7% of the Commonwealth’s new $100m capital allocation for supported accommodation for 309 people with disability. Details have not yet been finalised about how this funding will be delivered.
· Workforce Strategy: NDS NSW has been allocated $3.3million to develop a workforce strategy to deal with workforce recruitment, qualifications and shortages. This will cover both non-government and government workforces and will include the disability and HACC sectors. Contracts for this work are currently being finalised so more information will be available shortly.
Sunday, 1 June 2008
The Music in Me - ABC 1, Monday 9th June 2008
Some of the Merry Makers performed at On a Wing and a Prayer in April.
The Merry Makers includes many people who have Down syndrome - you might well see someone you know on ABC1 at 9.35 pm on Monday 9th June, in Enough Rope with Andrew Denton. This media release marks the latest award for The Music in Me:
The Music In Me - the debut documentary feature by Sydney filmmakers, Nigel Traill and Anne Kenyon has continued its scintillating run of success on the world festival circuit with another win at the Tenerife International Film Festival and a sale to ABC Television.
At a glittering awards ceremony in Tenerife in the Canary Islands in April, the deeply engaging Australian film received the Best Documentary Award bringing to five the number of awards garnered by The Music In Me.
The Music In Me - the debut documentary feature by Sydney filmmakers, Nigel Traill and Anne Kenyon has continued its scintillating run of success on the world festival circuit with another win at the Tenerife International Film Festival and a sale to ABC Television.
At a glittering awards ceremony in Tenerife in the Canary Islands in April, the deeply engaging Australian film received the Best Documentary Award bringing to five the number of awards garnered by The Music In Me.
- Winner Best Documentary Tenerife Int. Film Festival
- Most Inspiring Documentary Sedona Int. Film Festival
- Winner Best Documentary Monaco Int. Film Festival
- Humanitarian Angel Film Award Monaco Int. Film Festival
- Winner Best Documentary Avignon Film Festival
Described as ‘One of the most inspiring documentaries you’ll ever see!’, now Australian audiences will get the chance to view The Music In Me. ABC Television has bought the documentary and will be screening it as a special on Enough Rope with Andrew Denton on Monday 9th June at 9.35pm on ABC1.
At its world premiere in June, The Music In Me was awarded the prestigious Prix Pierre Salinger for Best Documentary at the 24th Annual Avignon Film Festival - the first time an Australian film had been screened in the history of the event.
Lisa Nesselson, European film critic for Variety has called the The Music In Me “A portrait of sheer human decency in the face of adversity… it’s hard to imagine a halfway thoughtful TV programmer – or audience – that wouldn’t warm to the heartache and triumph captured here.”
The Music in Me tells the profoundly moving story of the Merry Makers - a unique dance troupe based in Sydney comprising 70 dancers with some intellectual or physical disability who dance their way into the hearts and minds of all who see them perform. During the 63-minute documentary feature, the dancers and their families are filmed with engaging tenderness, empathy and candour as they prepare for the biggest show of their lives – a sell-out concert at Sydney’s Entertainment Centre.
To date, the documentary has been screened in Avignon (France), Montreal (Canada), Os (Norway), Texas (USA), New York (USA), Monaco, Calcutta (India), Sedona (USA), Milan (Italy) and will be screened in the UK in June 2008.
Links:
At its world premiere in June, The Music In Me was awarded the prestigious Prix Pierre Salinger for Best Documentary at the 24th Annual Avignon Film Festival - the first time an Australian film had been screened in the history of the event.
Lisa Nesselson, European film critic for Variety has called the The Music In Me “A portrait of sheer human decency in the face of adversity… it’s hard to imagine a halfway thoughtful TV programmer – or audience – that wouldn’t warm to the heartache and triumph captured here.”
The Music in Me tells the profoundly moving story of the Merry Makers - a unique dance troupe based in Sydney comprising 70 dancers with some intellectual or physical disability who dance their way into the hearts and minds of all who see them perform. During the 63-minute documentary feature, the dancers and their families are filmed with engaging tenderness, empathy and candour as they prepare for the biggest show of their lives – a sell-out concert at Sydney’s Entertainment Centre.
To date, the documentary has been screened in Avignon (France), Montreal (Canada), Os (Norway), Texas (USA), New York (USA), Monaco, Calcutta (India), Sedona (USA), Milan (Italy) and will be screened in the UK in June 2008.
Links:
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