NDIA Accountability Project

Daughters with Rett Syndrome and Intellectual Disability due to birth brain defect, ASD, Anxiety and Cerebral visual Impairment

Independent Assessments

Submission 119

Dear Committee members,

I am a parent of 2 daughters with lifelong disabilities. My older daughter is 27 and has Rett Syndrome which is a genetic condition and my younger daughter is 22 and has an Intellectual Disability due to a birth brain defect, ASD, Anxiety and Cerebral visual Impairment. I have been self managing all of our daughters supports first through WANDIS and now for the past couple of years with the NDIS. I like to self manage as it gives me the flexibility to organise their own supports in the way that would suit the girls best.

I am concerned about the impact of the Independent Assessments for a number of reasons:

  • It seems that the Allied Health Professionals that will be doing the assessments are only experienced in one particular area e.g. physio or occupational therapy. This will make it very difficult for them to understand other difficulties particularly psycho-social conditions.

  • Particularly with people with anxiety or intellectual difficulties it may be very difficult for them to relate to a new person they have never met before. Or they might present very different on the day than they would otherwise and this can easily give a false impression of the difficulties they face in every day life. An example could be my younger daughter. If you ask her what day of the week it is she could tell you because she will know it by the activity that she is going to do that day. So that is a tick in the box for cognitive ability. But if you ask her a few further questions she will answer you with a few words that make sense and then start rambling with sounds that are not even words…and yet she can speak. But she can’t answer a question or have a conversation.

  • I am also concerned with the waste of time that these assessments will be. We have already done hundreds of assessments over the years. Why do we have to do more and repeatedly?

  • My daughters have both just had extensive assessments done for their SDA applications and they have been SDA approved. Why do we need another independent assessment at the next plan review?

Should the independent assessments go ahead it is my submission that those with longterm or lifelong conditions be exempt from these. It causes unnecessary stress and uncertainty for the families and guardians who have to deal with all this.

Thank you for the opportunity to make a submission.