NDIA's secret report on PEDI-CAT (ASD) and NDIA misinformation

On the 12th October 2020, Mr Hoffman, the NDIA CEO, wrote a letter to NDIS participants, their families and carers. In his letter, he claimed that

The tools [for the NDIA's so-called Independent Assessment] have been ... used all over the world for many years.

A4 doubted this was true since no such tool existed for autistic people.

Previously, the NDIS was using the PEDI-CAT to assess autistic children. It is well known that this is not a suitable tool which is why the authors of the tool have been developing a revised PEDI-CAT (ASD) for some time.

The NDIA has known the PEDI-CAT was unsuitable for autistic NDIS candidates and participants: they were told so repeatedly, and it was the subject of a specific recommendation from the NDIS Joint Standing Committee. But the NDIA persisted with its use of the PEDI-CAT for autistic children. We doubt that the NDIA even records when the person who administers their PEDI-CATs regards the assessment6 result as invalid.

We understand that this seriously flawed data is now being used to develop the #roboNDIS based on the co-called Independent Assessments.

A4 felt that the NDIA's CEO's claim (above) may not have been true. We asked for all the information held by the NDIA that could justify their CEO's claim. You can download the Freedom of Information (FoI) response below. They provided just one document.

Apparently, it refutes rather than supports the CEO's claim. The "background and rationale" section of the Autism CRC's (hitherto secret) report (download sections below) says

... A modified version of the PEDI‐CAT for young people on the autism spectrum has been developed, termed the PEDI‐CAT (ASD) (Haley et al., 2017, 2019). The PEDI-CAT (ASD) includes 25 additional items (Daily Activities domain = 8, Social/Cognitive domain = 9 and Responsibility domains = 8) and 11 revised items (all in the Social/Cognitive domain) to create an assessment tool more specific to the autism population (Haley et al., 2017, 2019). Two studies have demonstrated the effectiveness of the PEDI-CAT (ASD) in the assessment of functioning in individuals diagnosed with ASD in the US (Kramer, Coster, Kao, Snow, & Orsmond, 2012; Kramer, Liljenquist, & Coster, 2016). The developers of the PEDI-CAT (ASD) have also suggested that this modified version may also better suit the needs of individuals with other NDCs (Hayley et al., 2017, 2019), although there are currently no published data to support this assertion. It is therefore critical to evaluate the psychometric properties of the tool with an Australian population of young people with ASD and other NDCs, to provide data that supports NDIA’s decision making.

This show that the PEDI-CAT (ASD) has not been validated and "used all over the world" and not "for many years" as Mr Hoffman claimed. The claim in his letter is untrue. The NDIA's planned introduction of so-called Independent Assessments and #robo-planning based on the assessments rely on incorrect information.

In its Sept 2020 document Independent Assessment Selection of Assessment Tools, the NDIS claims that " This version of the PEDI-CAT [the PEDICAT ASD] is validated for children and young people with Autism Spectrum Disorders (ASD)". This claim is at odds with the quote from the Autism CRC above that says the only previous validation of the PEDI-CAT (ASD) was for children in the USA, not for children generally.

The NDIA's document refers to the Autism CRC's (unpublished) report.

In addition, the Autism CRC was contracted in 2018 to undertake a scoping review of specific tools congruent with the ICF and relevant for children and young people with autism spectrum disorder (ASD) and other neurodevelopmental disabilities (NDD) to inform the work program.

The NDIA's document says the PEDICAT and PEDICAT ASD will be used for children age 7-17 years. A substantial majority of NDIS participants in the 7-17 year age range are autistic.

According to the NDIA's FoI section, this is the only document providing a basis for Mr Hoffman's claim in relation to the PEDI-CAT (ASD) ... and simply it does not support his claim. On the contrary, it refutes his claim.

It is extremely disappointing that the NDIS Minister and senior NDIA officials claim that the disability sector misunderstands their message about so-called Independent Assessments and about the Government's hopes to downgrade the NDIS. We fully understand. The whole disability sector sees that we are being lied to and that our views and experience are being misrepresented, disrespected and/or ignored.

 

Note: the first link below is to the original PDF from the Autism CRC. Use the first link if you just want to see the report produced by the Autism CRC about the PEDI-CAT (ASD). The other documents are the FoI response from the NDIA: parts 1-6 are just scanned versions of the document with FoI markings (they are much larger files).