letter: NDIS support is inadequate for autistic participants

Autism Aspergers Advocacy Australia (A4) wrote to Minister Fletcher and NDIS officials saying A4 is concerned that NDIS support for autistic participants is often inadequate.

Table E.10 in the NDIS Y6Q1 Quarterly Report shows again that close to 29% of NDIS participants are autistic. Figure E-5 from the report and a similar figure from The Australian (see both figures below) indicate to us that for autistic participants:

High levels of distress and depression in young people on autism spectrum

    About one in every 150 Australian children will be affected by autism [editorial: the diagnosis rate for Australian children was more than 1 in 40 in 2018], with boys more likely to have it than girls.

    It's what's called a spectrum disorder, where the symptoms depend on where you sit on the spectrum.

    And while we know some things about managing and supporting children with autism spectrum disorder, a lot less is known about how it can affect the mental health of those who have it.

    Autism support scaled back as NDIS tries to rein in blowout

    Rick Morton

    The average NDIS support package for children with developmental delays is now less than half what was budgeted and autistic children are also receiving less than expected, after a cost-cutting drive targeting three conditions.

    Autism and developmental ­delays have consistently been ­listed by the agency in charge of the $22 billion scheme as being among the biggest “cost pressures” over the past few years.

    The dangers of ‘neurodiversity’: why do people want to stop a cure for autism being found?

    The neurodiversity movement claims that autism is not a problem. This is nonsense

    I’m an American man affected by the disability autism. As a child, I went to special education schools for eight years and I do a self-stimulatory behaviour during the day which prevents me from getting much done. I’ve never had a girlfriend. I have bad motor coordination problems which greatly impair my ability to handwrite and do other tasks. I also have social skills problems, and I sometimes say and do inappropriate things that cause offence. I was fired from more than 20 jobs for making excessive mistakes and for behavioural problems before I retired at the age of 51.

    Caleb has autism, needs dialysis and a new kidney but Canberra Hospital says it can’t help him

    Ian Bushnell

    A Canberra teenager with one failing kidney is facing a death sentence without dialysis and an eventual transplant but according to his mother, doctors at Canberra Hospital have told him he can’t be treated because of his autism.

    Palmerston mother and full-time carer Leanne Browning says she was told on Christmas Eve that her 17-year-old son Caleb, who also has ADHD, only had a few months to live but did not fit the criteria for dialysis because he could not sit still enough and sedation would further damage his kidney.

    And without dialysis, he cannot be put on the transplant list.

    'Massive pressure': special needs classes clustered in Sydney's west

    Jordan Baker & Nigel Gladstone

    Special needs classes in public schools are heavily concentrated in the most disadvantaged parts of Sydney, with 92 in the Blacktown local government area alone but none in Hunters Hill, Lane Cove or Mosman.

    In the Liverpool and Campbelltown council areas there is an average of just over one class for students with disabilities per school, an analysis of NSW Department of Education figures by the Herald shows.

    Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature

    Abstract

    Despite significant advances in autism research, experts have noted that children severely affected by autism spectrum disorder (ASD) appear to have been understudied. Rigorous analysis of this observation has been limited, and the representation of severity has not been well-described. We assessed three domains of severity (communication ability, cognitive functioning, and adaptive functioning) in 367 treatment studies of children with ASD published 1991–2013. We found that the proportion of studies that included the severely affected population decreased significantly over time, as well as wide variability in measurement and reporting. Inadequate representation of the full autism spectrum in the literature could lead to an unbalanced picture of ASD and leave behind those with arguably the greatest need.

    National Disability Insurance Scheme builds on Helping Children with Autism success

    As Helping Children with Autism (HCWA) celebrates its 10th anniversary, providers and families are looking to the National Disability Insurance Scheme (NDIS) to continue the important work started by the program.

    HCWA was introduced by the Australian Government in 2008 to help families access crucial early intervention services for children with Autism Spectrum Disorder (ASD).

    Since its introduction, HCWA has helped almost 53,000 children and their families with more than $550 million in early intervention services including social learning intervention, behaviour management, occupational therapy, speech pathology and cognitive and learning skills.

    Adults on the autism spectrum prescribed mental health drugs without diagnoses

    Lachlan Gilbert

    Off-label prescribing of psychotropic drugs to adults on the autism spectrum could be exposing individuals to harm.

    Adults on the autism spectrum are being prescribed mental health drugs in instances where there is limited supporting evidence to do so.

    This was one of the findings of a UNSW-led study that looked at the use of psychotropic medication – or medication for mental health problems – by adults on the autism spectrum.

    Pages

    Subscribe to Autism Aspergers Advocacy Australia RSS