The deaths of more than 700 Australian adults with an intellectual disability could have been avoided with more appropriate health care and monitoring, a UNSW study has revealed.
Research by UNSW has found that while Down syndrome itself doesn’t cause death, it is still coded that way in a flawed classification system. Photo: Shutterstock.
A total of 732 Australian adults with an intellectual disability died in NSW over six years, many from causes or conditions that could have been avoided with more appropriate health care and monitoring.
Families of young children with disability can continue accessing support and advice through the Australian Government’s early intervention programs until the National Disability Insurance Scheme (NDIS) reaches full scheme in 2019-20.
Having made no progress on this issue, here is a letter that I sent to the Prime Minister:
Dear Prime Minister
Since June 2016 I have been unable to access my son’s myPlace webpage via the myGov website.
I have raised this several times. Yesterday, I spent about 2 hours mostly on hold with the NDIA and the myGov helpline.
The NDIA said their system is working perfectly and that the problem is with the myGov website. The myGov help people check out their system and said the problem is the NDIA’s myPlace system.
The Anne McDonald Centre made an alarming submission to the Victorian Parliamentary Inquiry into Services for People with ASD.
It alleges inappropriate testing of non-verbal children, many of whom have ASD ... and subsequently, inappropriate and ineffective teaching in Victorian schools.
On 21st December 2016, Bob Buckley, A4 Convenor has a video meeting with several NDIS staff to discuss A4's concerns over the NDIA's Early Childhood Early Intervention (ECEI) Approach. The NDIA then sent the email and letter (download below) to follow up.
email
Good afternoon
Please find attached response as follow up after our video conference on 21 December.
Included are a Signed PDF and a Word document for accessibility.
The Hon Christian Porter MP
Minister for Social Services
Parliament House
CANBERRA ACT 2600
Dear The Hon. C. Porter MP
Thank you for promoting a meeting of Autism Aspergers Advocacy Australia (known as A4) with the Hon. J Prentice MP, Assistant Minister for Disability, on 25th November 2016. I am optimistic that further discussion will lead to benefits for autistic people and people living with autism/ASD around the country.
A4 is the national grass-roots advocacy organisation for autistic people and people living with autism spectrum disorder (ASD) in Australia.
Autism Aspergers Advocacy Australia, known as A4, is disappointed that the Australian Government decided to defraud vulnerable autistic people and that it chooses to discourage autistic people from working.
Your government’s latest debt fabrication scheme
takes money from autistic people who made the effort to get some employment, and
sends a clear message to unemployed autistic people that unless they can get a permanent full-time job, they should not try to get work at all.
Thank you for the Christmas card that you sent me.
However, I am concerned. When we met recently, it seems your staff had advised that Autism Aspergers Advocacy Australia, known as A4, was excluded from your disability consultation processes because organisers in your Department did not have A4's address; they claimed that they didn't know which state A4 was located in so A4 was left off all the lists.
But they did know the address to send a Christmas card to A4's Convenor.
The Integrated Plan for Carer Support Services (the Plan) seems to fall well short of needs.
In a quick review (conducted December 2016), the Carer Gateway (see http://www.carergateway.gov.au/) was unhelpful. In particular, it lacked sensitivity to location and disability type(s).
The AMA today called for coordinated action to speed up the diagnosis of Autism Spectrum Disorder (ASD) in children, and to provide early intervention therapies to give children with ASD the best outcomes possible.
AMA President, Dr Michael Gannon, also called on the Federal Government to rule out any future narrowing of the eligibility requirements for people with ASD to access the National Disability Insurance Scheme (NDIS).
Mr Bob Buckley
Convenor
Autism Asperger’s Advocacy Australia convenor@a4.org.au
Dear Mr Buckley
Thank you for your email of 12 October 2016 to the Assistant Minister for Social Services and
Disability Services, the Hon Jane Prentice MP, regarding best practice early intervention for
autistic children and continuity of supports under the NDIS. The Minister has asked me to reply
to you on her behalf.
The enormous potential of autistic Australians is not being realised.
On the eve of International Day of People with a Disability (3 December), a pioneering network of organisations have come together to announce the formation of the Australian Autism Alliance. It brings together autistic people, their parents and carers, service providers and researchers.
As the National Disability Insurance Scheme (NDIS) rolls out across Australia, "autism and related conditions" is the most common primary disability across the NDIS. The Quarterly Report to the Council Of Australian Governments (COAG) by the Disability Reform Council in June 2016 reports that "autism and related conditions" account for 31% of NDIS participants across the country.
The latest national data shows the number of children diagnosed with autism spectrum disorder (ASD) continues to grow at a substantial rate. In June 2016, there were 78,951 autistic children getting Carer Allowance (child) which is an increase of 9.4% from 2015. Another 2,000 children listed autism in their next three disabilities. In June 2015 there were 72,184 children and in June 2004, there were 14,495 children aged 0-15 years getting Carer Allowance (child) with ASD as their first-listed disability.
Just over 6,000 children were diagnosed with autism in the 2015-16 financial year; an average of 16.5 new autistic children each day. Over 2.46% of children aged 10-14 years are autistic.
In 2016, there are 62,609 boys and 16,342 girls. The male to female ratio is 3.8:1. There is serious concern that many girls miss out on diagnoses and on the services and supports that they need.
The Agency continues to consult with experts such as the Cooperative Research Centre for Living with Autism and advocacy groups around the ECEI approach. The Agency values the experience and knowledge from these important groups of stakeholders.
Please would you provide the complete list of the experts that the NDIA consults relating to the provision/delivery of the NDIS for autistic people? And please would you explain how the Cooperative Research Centre for Living with Autism is a “stakeholder” in the NDIS.
We understand this means the NDIA will not consult with Autism Aspergers Advocacy Australia (A4).
On 11/11/2016, A4 received a letter (dated 9/11, see below) from Assistant Minister The Hon Jane Prentice MP in response to A4's email that contained a meeting request. A4 sent a copy of the original letter to the Assistant Minister.
The letter mentions a response from the NDIA and says the "letter is enclosed" ... but it wasn't.
