9 September, 2020
VALID is deeply concerned that people with intellectual disabilities will be much worse off if the NDIA goes ahead with its plans for compulsory Independent Assessments. The information the NDIA has released so far tells us that there is a lack of evidence that Independent Assessments will produce the outcomes that NDIA wants, and that people will be put at serious risk if it fails.
We know that this approach has not been properly trialled with people with intellectual disabilities who have complex support needs. Also, that the assessment tools the NDIA has chosen are not likely to give information that is a true reflection of the wishes and needs of a person with intellectual disability. Experts tell us that people with intellectual disability typically need a sustained, multi-disciplinary approach to put together a reliable, ethical, evidence-based assessment of need. Unless the NDIA’s proposed Independent Assessments have been proven effective for people with intellectual disability, they cannot go ahead in any way.
We know that Independent Assessments rely on interviewing the participant, as well as speaking with people who know the person well (‘informants’). We don’t know yet how the NDIA will decide whether a participant can accurately report their wishes and needs, how families will be involved, who the right informants should be, how conflicts of interest will be managed where services are the only available informant, the role of independent advocacy and supported decision-making and much more. These questions must be properly resolved before Independent Assessments are operating.
Inclusion Australia, with VALID’s support, worked hard to show the NDIA that people with complex support needs had to have a different approach to planning. The standard pathway didn’t work for some people – that’s why the NDIA has a Complex Support Needs Branch now. Independent Assessments is just one more initiative that hasn’t been tested or endorsed by the participants who use the NDIS the most. We don’t want one more parallel system – we want a system that works for everyone.
The NDIA must hold people with the most complex support needs at the heart of the design of any new initiative. This means co-designing with people with intellectual disabilities, their families and advocates – people with intellectual disability with communication support needs, people with behaviours of concern, people formerly institutionalised, and people who have no family or friends they can rely on. We are talking to the NDIA at every level, and working with Inclusion Australia and other advocacy organisations, to speak up about the problems with Independent Assessments. We will keep raising your questions too, and keep you updated about what we find out.
Kevin Stone AM