News/Announcements

letter: mad bureaucracy in the NDIA

Dear Minister Andrews MP

I am writing to you about the mad bureaucracy in the NDIA, particularly in relation to the funding of transport associated with disability services.

In many instances, a disability service is either provided in a person's home or requires transport in order that a person can access the service. If the cost of transport is not included, then the service is simply not financially viable.

contact NDIS about functional assessment for ASD

Sent via the NDIS contact form (see http://www.ndis.gov.au/form/contact-form) on 30/5/2014

I see from various documents on the NDIS website that a person with autism spectrum disorder (ASD), as well as needing evidence of a formal diagnosis, also needs a "severity level" ... or the NDIS will make its own functional assessment to determine his severity level. As my son's diagnosis was done before there were severity levels associated with ASD diagnoses, I expect he will need an NDIS functional assessment to determine his severity level.

Please can you provide details of:

    NCID open letter to Assistant Minister for Social Services


    An open letter to Senator The Hon Mitch Fifield, Assistant Minister for Social Services

    Dear Minister Fifield

    With respect, you cannot go on national radio (AM, Radio National 7 May 2014) and say to people with intellectual disability and their families that people with significant intellectual disability are unable to work in the open labour market (open employment).

    This is factually wrong.

      Minister's letter announces research into diagnostic practice for autism

      Back in November 2013, Peter Hill wrote (see link below) to Senator Concetta Fierravanti-Wells, Parliamentary Secretary to the Minister for Social Services, asking about:

      • a meeting
      • the number of autism spectrum disorder (ASD) diagnoses (which are increasing significantly)
      • the cost of ASD to the community and steps that could/should be taken to minimise the burden on the community

      letter to Senator Fifield, Assistant Minister responsible for disability services and supports

      Dear Senator Fifield

      The following raises concerns about the likely and imminent demise of crucial services for children with autism. I understand that the contracts for the Autism Advisers (funded as part of the Commonwealth Government's Helping Children with Autism package) in South Australia and in the Australian Capital Territory have not been renewed. As a result of the NDIS, the Autism Adviser service in these regions will cease soon unless those contracts are renewed.

      US CDC reports autism rate is 1 in 68 (2010 data)

      A recent media release (see http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html ) says

      The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD). This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.

      Note that recent (2012) Australian data on the prevalence of ASD shows 1 in 62 children in this country have a diagnosis ... see http://a4.org.au/a4/node/695 and http://a4.org.au/a4/node/622 There is nothing to celebrate in rising autism rates because people who are properly diagnosed with autism have significant disability that "requires support".

      National disability scheme is excluding people affected by autism


      Australia's National Disability Insurance Scheme's (NDIS) Operational Guidelines – Access are dysfunctional in relation to autism spectrum disorder. The NDIS fails many people with autism spectrum disorder (ASD), denying them the services and supports they need. People with ASD are among the most vulnerable and disadvantaged people in Australia. The Government is not giving people with ASD a fair go.

      The message is simple. Government needs to act to support people with ASD and to improve their outcomes. The NDIS eligibility criteria are designed to exclude some people with autism spectrum disorder from the NDIS, people who are assessed as needing disability services by allied health professionals with specific expertise in ASD. And for those people with ASD who are deemed eligible for the NDIS service and support, NDIS individual planners (gatekeepers), who mostly lack expertise in and understanding of autism, reject some requests for essential disability services and supports. Following is the evidence and justification for this simple claim that the NDIS, the scheme created to address the enormous disadvantage that Australians with a disability experience, in its initial implementation is failing people with ASD.

      letter to Senator Abetz

      A4's Convenor posted a letter to Senator Abetz this morning. The letter requested a meeting to discuss matters arising from things he said on the ABC's Q&A program first broadcast on 17/2/2014.

      The letter contains links to the video of the show ... and our transcript of the section of concern of the show.

      It also gives detailed reason for our concerns ... and evidence to support our case.

      A4 is concerned that Minister Abetz and the Government:

      • misunderstand and misrepresent people who receive a Disability Support Pension ... often portraying them as welfare bludgers

      Abbott Government ignores completely stakeholder advice on disability employment

      Following misinformation in the media (see http://a4.org.au/a4/node/742), A4 wrote to the newly elected Prime Minister warning about policy that vilifies people with severe and profound disability for being unemployed.

      This information is essential for the Treasurer and the Finance Minister ... but the Prime Minister's office chose to not send the letter to most of the key agencies and Ministers. Apparently, they sent it only to the Department of Social Services. The Social Services Department's response (download below) shows little or no recognition of the letter's content.

      Meeting request - Senator Fifield about the NDIS

      A4 requested a meeting with Senator Fifield, Assistant Minister for Social Services (responsible for Disability Services), to discuss how to improve the NDIS for people with Autism Spectrum Disorder.

      A4 shares some of the concerns raised in The Australian (see http://a4.org.au/a4/node/756) relating to people with Intellectual Disability; at least 30% of people with autism, often severe autism, also have an intellectual disability so we can expect to have some common concerns/issues. A4 and also has concerns that specifically relate to autism.

      UC Davis MIND Institute Study Finds That Children Who Have Autism Far More Likely to Have Tummy Troubles

      Sacramento, CA (PRWEB) November 06, 2013

      The gastrointestinal problems are linked to problem behaviors in children with autism, developmental delay.

      Children with autism experience gastrointestinal (GI) upsets such as constipation, diarrhea and sensitivity to foods six-to-eight times more often than do children who are developing typically, and those symptoms are related to behavioral problems, including social withdrawal, irritability and repetitive behaviors, a new study by researchers at the UC Davis MIND Institute has found.

      to the Prime Minister: please avoid the usual Government vilification of people with disability

      A4 sent the following message to the Prime Minister in response to the usual media attacks on people with disability.


      Dear Prime Minister Abbott

      I write hoping to head off yet another round of Government vilifying people with disability.

      NDIS: reverts to original name ... slowly and cheaply


      The Coalition in line with its pre-election commitment has directed that DisabilityCare resume its original name of the National Disability Insurance Scheme (NDIS).

      The return to NDIS has two purposes. The first is to leave behind a name that was seen by many people with disability as patronising and not reflecting the intent of the scheme to have the individual at the centre and in charge.

      People with disability don't so much want to be cared for as supported to be as independent as they can.

      Bob Buckley: State Finalist (ACT) Senior Australian of the Year 2014

      Autism activist

      Many people would find it impossible to devote the time and energy to advocacy activities while also caring for a child with a disability. For Bob Buckley, however, having a child with Autism Spectrum Disorder (ASD) has driven his desire to raise awareness, attract funding and advocate for better opportunities for people living with ASD. After his son was diagnosed with the disorder, Bob began to apply his outstanding academic and analytical skills to become one of Australia’s most formidable ASD activists. In 2002, Bob co-founded Autism Aspergers Advocacy Australia, which he convenes to this day.

      Autism CRC website and a media release


      Australia's Autism CRC has posted its website — see http://www.autismcrc.com.au/

      It also posted a media release ...

      Researchers to unveil details of world first autism diagnostic tool

      Australian researchers are combining genetic, biological and behavioural research to develop a world first screening tool that could enable early identification of autism risk.

      Australian Press Council ruling on autism reference

      THE following adjudication has been issued by the Australian Press Council.

      The Press Council has considered a complaint about an article published on the news.com.au site on 23 November 2012, titled "Autistic man convicted of murdering WA mum". It concerned the conviction on that day of a man for the murder of his mother.

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