Submission to the joint standing committee who’s role is to inquire into the implementation,

performance and governance of the NDIS, the committee will inquire into and report on the Independent Assessment process.

We are parents of a young man living with Dravet Syndrome. This is a rare, catastrophic, life long form of epilepsy that will probably get worse over time. Our son also has severe intellectual disability. He can have very challenging behaviours and requires familiar well trained support workers.

We have grave concerns about the use of Independent Assessments in the form as proposed by the federal Government as a means of assessing the requirements for a person with complex health requirements.

We opted to participate in the pilot program and entered into the process with curiosity and an open mind. I stopped the assessment during the observation phase as it was clear that the assessor did not know how to interpret accurately what she had observed. Her observations were inaccurate and blatantly misleading for anyone then developing and implementing a plan and associated budget to meet our son’s requirements.

For example these were some of the assessor’s recordings.

• The assessor recorded “LH (the participant) was observed reading the paper”. The reality is that the paper was open in front of LH and he was looking at it; however LH cannot read.

• The assessor recorded “LH was observed cleaning his teeth”. The reality is that the Support Worker handed the toothbrush to LH and LH has never cleaned his teeth.

• The assessor recorded “LH was observed to mobilise freely about the house”. The reality is that LH has a gait disorder and walks very clumsily with no regard for personal space so he nearly knocked the assessor out of his way which was not recorded.

• The assessor recorded “LH negotiates stairs easily” The reality is we have no stairs and LH was observed walking outside and navigating a single step of less than 8cm’s. Unrelated to the assessment but useful for context; LH has previously had a seizure and fallen down a set of stairs elsewhere resulting in a trip to hospital for a head laceration; and had a seizure on top of a slippery dip resulting in a fall rendering him unconscious with a compound fracture to his arm.

• The assessor recorded “LH put his shoes on”. The reality is that the support worker asked him twice to put his shoes on and he said “no”. The Support worker retrieved LH’s elastic sided shoes placed them in front of his feet and then told him to put them on.

Also while undertaking the assessment the assessor did not recognise the occurrence of two seizures.

• After these assessments I asked for the information to be shared to see if I could determine whether the assessor understood what she had observed. It was evident that she had not accurately observed these behaviours and she seemed more motivated to find something to write and fill in the Independent Assessment questionnaire rather than concern with the accuracy of the inputs. It was at this point that I terminated the assessment and asked that the record be destroyed as I had no confidence that the partial entry would not be used negatively against LH.

• So our curiosity with the process clarified that in the case of a person living with extremely complex needs a single assessment with someone who is not appropriately trained is entirely inappropriate. In the case of this assessor, who is trained as a Speech Pathologist (with very little experience), she was clearly unable to accurately observe and record behaviours that would otherwise be developed and reported on, in LH’s case, by a combination of up to six reports by professionals responsible for providing care to LH; a General Practitioner, a Psychologist, an Autism Therapist; an Occupational Therapist, School Teacher, and Support Worker.

• It is clear to us that the process of Independent Assessments being implemented by the Federal Government is extremely flawed and should be abandoned.