Minister Reynolds has the NDIA and disability representatives working on rebuilding trust. The NDIA and some parts of the disability sector seem to think this is just about recent conduct.
For the autism sector, there are deeper issues from the outset.
Here is a letter from A4 to the Minister briefly describing some of the history and issues.
The NDIA did not respond to a number of A4's concerns. Issues of particular concern were:
"misinformation and untruths" from the NDIA's CEO to NDIS participants about the assessment tools that were planned for functional assessment of autistic NDIS participants for the so-called Independent Assessments, and
inexpert and misguided advice from the NDIA's Independent Advisory Council (IAC) about early intervention for autistic children.
The NDIA did not respond to A4 about its concerns.
Subject: Government’s ongoing war on autistic Australian
Autism Aspergers Advocacy Australia (A4) deplores media reports (see Annex below) saying that “The Minister responsible for the National Disability Insurance Scheme has blamed an uptick of Australia’s aged, autistic and obese people for the ‘unsustainable’ rising costs of the service”. Your government’s war on autism is unacceptable. We complained about it before and were ignored.
Aged autistic people are one of the smallest subgroups in the NDIS: there were just 125 of them in June 2021, just 0.8% of 14K+ NDIS participants in that age group. While their funding level is higher than average for the NDIS, we doubt the numbers in this very small group will increase significantly for some time. We have not found NDIA reporting on obesity; we doubt the NDIS even has reliable data on obesity of NDIS participants.
The NDIA claims in its Participant Service Charter that it wants to be "transparent". However, it avoids making public communication and decisions about some key issues. For example, the following show that it does not want its records about commentary from a disability representative organisation (DRO) on advice it received from its IAC released.
The Hon. Scott Morrison MP
Prime Minister
Parliament House
Canberra ACT 2600
Dear Prime Minister Morrison,
There are numerous reports in the media that the National Disability Insurance Scheme (NDIS) has seen the average cost of individual support packages increase by at least 12% per year since 2017. These include:
A4 received the following response to a Freedom of Information request. This response is alarming because it shows the NDIA just made up the criteria and amounts for its 4 levels of early intervention support for autistic children in its consultation paper (see links below).
It says "the research and evidence used to calculate funding amounts listed in the consultation paper were informed by the Autism CRC early intervention report", but the Autism CRC's early intervention report contains none of that information. There are no severity levels or funding amounts mentioned ... unless the NDIA also inserted sections in to a copy of the report (as they apparently did with the Tune Review).
Autism Aspergers Advocacy Australia (A4) recently sent this letter to the organisations below. We are very concerned about delayed diagnosis of autistic children and the consequent long-term detriment this brings for them, their families and the community generally.
I received the attached response from the NDIS (MC20-002360) on 8/1/2021. The response, from the NDIS on your behalf, refuses to answer legitimate questions (see below) on, or to provide essential information about, the NDIS recognising formal diagnoses of autism spectrum disorder made by state agencies.
The Hon Greg Hunt MP
PO Box 6022
House of Representatives, Parliament House
Canberra ACT 2600
Dear Minister The Hon Greg Hunt MP
Autism Aspergers Advocacy Australia, known as A4, wrote to you on 11/8/2020 and again on 1/11/2020.
Our initial letter expressed concern that while the Health Department created a "National roadmap for improving the health of Australians with intellectual disability", this "roadmap" does not address, consider or even recognise the needs of autistic Australians with mental illness.
Autism Aspergers Advocacy Australia, known as A4, represents and advocates for autistic Australians, their families and associates. Autistic Australians are people who are diagnosed with autism spectrum disorder (ASD).
We are concerned that diagnoses and advice autistic children currently get in Australia are often delayed, or are for "developmental delay" instead of ASD.
