Siblings Australia is planning, along with other committed agencies, to host an adult sibling forum in Sydney in late June 2015. Our thoughts are with all those affected by the recent earthquake in Nepal. Nepal's National Federation of the Disabled (NFDN) has released this article urging everyone involved in rescue and reconstruction to be inclusive in their approach and consider the needs of people with disability. You can read more by clicking this link
The Attorney-General requires the AHRC to report on
- the obstacles faced by older persons and persons with disabilities in actively participating in the workforce;
- discrimination against older persons and persons with disabilities as a systemic problem and a considerable barrier to their enjoyment of human rights;
- the economic and social costs, and the costs to productivity, that result from discrimination against older persons and persons with disabilities in employment; and
- the Australian Government’s commitment to the promotion and protection of human rights of older Australians and Australians with disability.
An Issues Paper will be published shortly. The Inquiry will conclude and report by July 2016.
- practices, attitudes and Commonwealth laws that deny or diminish equal participation in employment of older Australians and Australians with disability; and
- the Commission’s recommendations as to Commonwealth laws that should be made or amended, or action that should be taken, to address employment discrimination against older Australians and Australians with disability.
... The role of housing in the NDISMinisters noted that the total budget for full scheme NDIS includes capital costs for specialist accommodation.
Some of these funds will need to support existing specialist accommodation supply.
The balance of funds will support people with disability requiring an integrated housing and support model to access housing and to enable the market to generate and leverage new and innovative specialist disability housing.
The Council has asked officials to work with the NDIA to support the development and testing of innovative accommodation pilots in trial sites that will help to expand the supply of appropriate and sustainable integrated housing and support models for people with disability. This may include existing, contemporary and/or innovative supports.
Initially this will focus on trial sites in which there are adequate funds to support meaningful activity in this area.
These pilots will start to provide us with evidence about how different models contribute to outcomes for participants.
It is very important that we take a measured approach to investment to ensure that the scheme is sustainable and can meet the needs of participants into the future.
Increasing the supply of specialist disability housing will be incremental. A small number of initial pilots can help us define a path forward for specialist housing options to support participants as the NDIS transitions to a national scheme.
The NDIS efforts in relation to specialist disability housing will be in addition to the ongoing mainstream housing effort of States and Territories.
... read the full statement on all agenda items here.
On Sunday April 16, contentious Princeton Professor Peter Singer, once again argued that it is “reasonable” for the government or private insurance companies to deny treatment to infants with disabilities. Singer’s remarks were made on “Aaron Klein Investigative Radio,” which is broadcast on New York’s AM 970 and Philadelphia 990 AM.
In the interview, which was perhaps ironically conducted as part of a press tour Singer is currently on promoting his new book about charities, “The Most Good You Can Do: How Effective Altruism Is Changing Ideas About Living Ethically,” the professor advocated the shocking claim that health care laws like the Affordable Care Act should be more overt about rationing and that we should acknowledge the necessity of “intentionally ending the lives of severely disabled infants” ... read the full statement here.
Housing for people with disability is in crisis.
Over 650 people with disability, their families and carers shared their housing stories detailing the challenges they face with inadequate housing now, and their fears for the future.
They also shared their dreams, their hopes and their aspirations for appropriate housing that supports them to live their lives independently and to the full.
Together they represent the voice of the disability community and a compelling case for action ... read the summary, and/or download the full report here, and use links to share
Many people think the words “tantrum” and “meltdown” mean the same thing. And they can look very similar when you see a child in the middle of having one. But for kids who have sensory processing issues or who lack self-control, a meltdown is very different from a tantrum. Knowing the differences can help you learn how to respond in a way that better supports your child ...
Professor Stewart Einfeld (the principal researcher at the University of Sydney for the Stepping Stones Triple P Project, Chair of Mental Health, Faculty of Health Sciences, University of Sydney, and is a Senior Scientist at the Brain and Mind Research Institute) talks about his motivation for and aim of the project in New South Wales. This can also be applied to the Queensland and Victoria roll outs.
At a time when educators, parents and policy advisors in Australia are grappling with how to deal with the emotional and behavioural needs of children with disabilities, Stepping Stones Triple P is demonstrating it can provide at least some of the answers ...
Preparing Your Son Or Daughter for College: Suggestions for Parents of Children with Intellectual Disability, David Westling and Kelly Kelley
... (Parents) often ask us, “What can we do to increase the chance our child will be admitted?”(in Preparing your son or daughter for college,
Unfortunately, when they ask the question, it is often too late for them to do the kinds of things that will ready their child for college. The kinds of attitudes and activities that are most important should begin early in life and continue until the young man or woman is ready to enter college. So through this paper, we are reaching out to parents to tell them what we think will best prepare their child for college. We hope you will find these suggestions useful ...
Order your Entertainment™ Books and Entertainment™ Digital Memberships before 27th April 2015 and you'll receive an extra $150 in Early Bird Offers! Every Membership we sell raises $13 towards our fund-raising! The more Memberships we sell, the more we raise – so please forward this email to your family and friends!
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For only $65, Entertainment™ Memberships are packed with hundreds of up to 50% off and 2-for-1 offers for the best restaurants, cafés, attractions, hotels, accommodation, travel, and much more. so get in early, before they sell out!
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Start a team or run on your own.
Entering the City 2 Surf and raising money for Down Syndrome NSW
Sponsoring Josiah
Run with Josiah and help him make the 14kmsIf you are interested please click here to register.
Meet the runners at the finish line for a celebration picnic.
A post-graduate scholarship opportunity in the field of intellectual disability is currently available within the School of Psychiatry, at the University of NSW, in Sydney:The Department of Developmental Disability Neuropsychiatry (3DN)is offering a three-year full-time PhD stipend to one or more highly motivated student/s to work with Professor Julian Trollor on a project that will improve access to, and quality of mental health services for people with ID. The PhD is to be undertaken as part of a broad program of research under the 'Improving Mental Health Outcomes for People with an Intellectual Disability’ National Health and Medical Research Council Partnerships for Better Health Project'.All details of the application process, stipend, and application process are on the 3DN website, here.
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So we are delighted that the Lady Mayoress, Kirsty Lloyd, has chosen DS NSW as one of her nominated charities for the year with a private screening of Disney’s new live action 'Cinderella' on Tuesday 21 April.
3rd Down Syndrome National Swimming ChampionshipsOn 11 February 2015, the Senate referred the following matter to the Senate Community Affairs References Committee for inquiry and report
Violence, abuse and neglect against people with disability in institutional and residential settings, including the gender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people with disability, and culturally and linguistically diverse people with disability.Submissions should be received by 29 May 2015. On 25 March 2015, the Senate granted an extension of time for reporting until 16 September 2015
Educating Learners with Down Syndrome - research, theory and practice with children and adolescents. Eds Rhonda Faragher and Barbara Clarke
A) it was absolutely hilarious.B) it’s a story of what happens when competition, ego and status don’t influence relationships ...Walls of Glass
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| Young Alicia Carmody, who was the inspiration for Lance's ride, with her mother, Bec, and Lance. Alicia's father, Cameron, and Lance have been friends since early childhood. |
Relative to other aspects of Down syndrome, remarkably little is known about the psychiatric problems experienced by youth and young adults with this syndrome and if these problems differ from others with intellectual disabilities. Yet adolescence and young adulthood are particularly vulnerable time periods, as they involve multiple life transitions in educational, medical, and other service systems ... These preliminary observations warrant further studies on genetic, neurological, and psychosocial factors that place some young people with Down syndrome or other IDs at high risk for severe psychiatric illness.
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| Naomi Lake with her first book (photo used with Naomi's kind permission) |
The present and future live birth prevalence of Down syndrome (DS) is of practical importance for planning services and prioritizing research to support people living with the condition. Live birth prevalence is influenced by changes in prenatal screening technologies and policies. To predict the future impact of these changes, a model for estimating the live births of people with DS is required. In this study, we combine diverse and robust datasets with validated estimation techniques to describe the non-selective and live birth prevalence of DS in the United States from 1900–2010. Additionally, for the period 1974–2010, we estimate the impact of DS-related elective pregnancy terminations (following a prenatal diagnosis of DS) on the live births with DS ... Our results and our model provide data on the impact of elective pregnancy terminations on live births with DS and may provide a baseline from which future trends for live births with DS can be estimated.
The full text of this important paper is freely available online here.
... Over the course of the past decade, the prenatal testing industry has advanced and shifted. New screening tests called Non-Invasive Prenatal Screening (“NIPS”) have come on the market ... a new study ... concludes that this type of testing “had higher sensitivity, a lower false positive rate, and higher positive predictive value than did standard screening.”
Another study came out this week ... that sheds some light on the significance of the cultural context of prenatal testing. This study analyzed decades of data about prenatal testing and the prevalence of live births of babies with Down syndrome in the United States. It concluded that the rate of live births of babies with Down syndrome is approximately 30% lower than it would be without prenatal testing, because some women choose to terminate their pregnancy after discovering their baby has Down syndrome.
But even within the United States, the termination rates vary from population to population and from region to region ... This study suggests at least two conclusions. One, the United States as a whole contains many women who choose to have babies with Down syndrome, whether by forgoing prenatal screening tests, forgoing diagnostic tests, or choosing to continue a pregnancy with a prenatal diagnosis. Two, cultural factors play a significant role in determining who decides to terminate pregnancies once trisomy 21 has been identified ...A sick, unethical cycle: prenatal testing for Down syndrome
So many items have cropped up in the past two weeks that here is a listing of all this news about Down syndrome prenatal testing. They lead to a sad conclusion ... But, maybe we can fix it this time with the administration of NIPS if enough people demand that laboratories and practitioners follow the guidelines and respect women seeking prenatal information by ensuring they receive ALL the information.
Joint Statement of Disability Organisations Calling for the Release of People Living With Disability in Immigration Detention CentresThe Australian Cross Disability Alliance supports calls for the Department of Immigration to review its decision to deny a visa to a child because she has disability, despite finding her parents fit to live and work in Australia. The Fonseka family from Sri Lanka plan to work in a Christian crisis centre in remote Australia and claim their visa application has been denied because their daughter, Eliza has Down syndrome[i].
National Ethnic Disability Alliance (NEDA) President Suresh Rajan said: “People are being reduced to formulas and this effectively sanctions disability discrimination,”
“People are reduced to an equation, or net benefit approach in a process that determines eligibility across the potential or possible cost to a community because of one’s disability. It fails to view these individuals as people who participate to the overall fabric of Australian life,” said Mr Rajan.
This case is not isolated. There have been reports of similar cases in the media[ii]. Damian Griffis, CEO, First Peoples Disability Network said: “Decisions such as these reflect poorly on us all as Australians, and unfortunately are indicative of a discriminatory attitude towards disability that still prevails,”
“If the system automatically discriminates on the basis of disability, then that system needs to be reviewed,” said Mr Griffis.
Matthew Bowden, Co-CEO, People with Disability Australia said: “Australia is a signatory to the UN Convention on the Rights of Persons with Disabilities and this case highlights how far we still have to go as a society. There was a national outcry recently relating to discrimination against a young child with Down syndrome, and this decision sends a message about the way we view disability and diversity as a nation.”
Carolyn Frohmader, CEO, Women With Disabilities Australia said: “The Australian Cross Disability Alliance encourages the Minister responsible to review this decision and to recognise the value and contribution of people with disability.”
Disability service providers from across Australia call for legislative change to end the detention of all people living with a disability and their families, following the release of the Australian Human Rights Commissioner’s National Inquiry into Children in Immigration Detention.
People living with disabilities are some of the most vulnerable people in the world. The United Nations High Commission for Refugees estimates there are between 2.3 and 3.3 million forcibly displaced people living with a disability, for whom resettlement options are chronically limited ... read the full Statement and list of signatories here
National Ethnic Disability Alliance report:
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| Read the full text of the CDA media release here |
CDA's Issues Paper, "Belonging and Connection of School Students with Disability" is available to download here.CDA commissioned Dr. Sally Robinson and Julia Truscott of the Centre for Children and Young People at Southern Cross University to develop this issues paper, which raises important concerns and suggests some solutions in relation to the school experience of students with disability.CDA is following the matter closely on its Facebook page.
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| Image: Pixabay.com |
