Independent Assessments
Submission 34
I am extremely concerned about the new NDIS assessment process being introduced. My son has autism and it is absolutely impossible to assess him and his support needs during one assessment with one individual (who does not know him) with no consideration of reports from all of his specialists.
His disability is complex and affects him in many different ways, in many different scenarios. Some weeks or months are extremely difficult, with him exhibiting a multitude of challenging behaviours, his sleep and daily functioning being severely impacted, followed by some weeks where he manages relatively well. At times his disability can appear invisible to those who do not know him. This is not the case with his treating specialists who are highly experienced in treating children with ASD and understand their complex challenges.
The current process in which reports are collected by his various specialists who have known him for years and are aware of his complex challenges and support needs on a number of levels, in a variety of settings and circumstances, is a process reflective of his disability as a ‘whole’.
i have spent years building a team of highly experienced ASD specialists across multiple modalities that can best support my child and it is their reports I wish my child’s assessment to be based on.
the scenario in which one pre-determined NDIA employed contractor (who only needs to have had 12 months experience in their field) assesses my child over a 3 hour period and decides my son’s future is disturbing and could have severe repercussions on the success of early intervention therapies which are proven to be critical.
his capacity to participate successfully in life and to function to the best of his ability is totally dependent on him having high quality, consistent and regular therapy with carefully chosen experts.
it could mean the difference between having an appropriate level of funding that enables chosen experienced specialists to apply evidence based therapies providing my son with the best possible outcomes (with minimal reliance on NDIS funding as an adult), or a level of funding that reduces him to minimal support undermining the progress made in his early years, with the result of him remaining incapacitated by autism forever never to reach his full potential, and with the possibility that he would rely on some form of government supports for the rest of his life.
it is a humiliating and degrading process. Many adults let alone children with ASD do not understand their disability may not think there is anything wrong with them and do not want to discuss their disability with a stranger. My son is able to hide the full impact
Independent Assessments
Submission 34
of his disorder at times when ‘appearances’ matter or could simply be having a ‘good day’ on the day of assessment.
rather than allowing my child to see his ASD as a ‘disorder’ and something to be ashamed of, I teach him his disability is a gift, a “superpower” to be proud of, something that makes him unique and may give him a chance to offer the world something special. If he were to answer questions about his own disability he would probably say there’s nothing wrong with him at all and he can do anything he wants. Personally I would not want my son to be present at an assessment interview where I would basically spend hours outlining all of the worst and most negative impacts of his disability, where he would be asked to perform tasks to ‘prove’ his disability - this is incredibly damaging psychologically and would undermine all of the positive work we do on a daily basis as a family and with all of his specialists.
My child may sometimes present as capable and minimally impacted by his ASD whilst at home in the comfort of his own environment, on a good day where there is nothing to overload his system to produce a meltdown - whereas outside the home and in a vast number of other settings, an accumulation of sensory input, impairments in social skills, executive / cognitive functioning, high anxiety levels, makes his experience vastly different and the overload can impact him for days or weeks afterwards. It is common for my son to become non verbal in stressful, overwhelming or challenging social circumstances but this is very rarely exhibited at home, his “safe space”.
If it is solely a parent answering the assessment questions it can be so subjective as to their understanding of their child’s disability, willingness to accept the seriousness of their child’s disability, their level of education, their socio-economic status, their understanding of the system.
disability of all kinds is complex, multi-layered and it is absolutely vital to include reports from an experienced team of experts, who each specialise in the particular area of that disability/disabilities, have treated the person over a period of time and understand the full impact of their disability on all aspects of their life.
Why doesn’t the government provide additional funding for all those on the NDIS to enable them to pay their chosen specialists for the reports required for the yearly assessments without them needing to use part of their funding budget?
This would effectively empower disabled people instead of subjecting them to a demeaning and insufficient assessment process that is being introduced solely as means to cut critical funding to those in our society who need it most.