Independent Assessment Submission

My name is and I would like to share my story in an appeal to reconsider the introduction of so called “Independent Assessments” into the NDIS.

I am a single parent who cares for my teenage son who has autism, ADHD, sensory integration disorder, sleep initiation disorder executive function disorder and substantial physical (16%) and processing impairments (30%). His emotional and behavioural age varies from 3-6 years behind that of his peers depending on emotional regulation.

I also care for my parents in their 80s who have multiple co-morbidities and who in turn care for my 35 year old brother who has extreme anxiety, depression and autism making him effectively house-bound.

My son has been an NDIS participant for only two years following a substantial delay due to errors in the original planning process and subsequent review. The NDIS funding has made a profound difference to my son’s life. It has allowed me to work with a team of people to address the different aspects together to help him gain success in his daily life by providing “reasonable and necessary” individualised support. Prior to this I was dealing with ongoing violent, emotional outbursts, depression and self-harming behaviours. I was limited in accessing support for my son by my income and availability with the feelings of parental guilt knowing what needed to be done to help my son but not being able to access it. During the CoVid lockdowns and loss of work I would not have been able to provide any support for my son were it not for the NDIS funding allowing me to employ a support worker and continue to access psychology, physio and OT services. Being able to work with a united team of professionals has also provided me with emotional and practical support and for the first time in many years I am able to look forward with a positive outlook of what the future could hold for my son.

As the primary carer of my son, I have been fully supported in the planning process by professionals whose goal is to help my son be the best he can be. I have been able to source and employ the people who are best suited to my son and put his interests first. They have also been able to provide accurate written reports for planning meetings to help identify what my son needs to thrive. These meetings are particularly harrowing as they focus on the deficits of the person being assessed and I find them emotionally very draining and upsetting.

The proposed introduction of “Independent Assessments” is of great concern. Having already experienced my child’s desire to take his own life for being different and his self-loathing after experiencing violent meltdowns I am very reluctant to put him in a position of having to display all his deficiencies and humiliation to a complete stranger. This is not something any human would be prepared to do voluntarily and yet we ask it of people with impaired abilities less able to self advocate.

I have considerable fears for my son’s mental health, wellbeing and self-esteem going through this process. Additionally, this snapshot Independent Assessment is likely to lead to a very skewed outlook and places a considerable cognitive and emotional burden on participants who are already struggling with social and physical impairment. Despite my son’s best intentions, he would not be able to provide a truly accurate picture of the effects of his disability on his life. His social impairment means he does not recognize his impact on people around him or his impairment in social functioning. His lack of self-understanding means he will not be able to advocate for this at any assessment as he is unaware of it and cannot comprehend its impact on his immediate life let alone into the future. There have also been many occasions when he has not been able to recall any

• The proposed assessors would be employees of limited of large corporations that have won NDIA tenders. It is logical to assume that to have ongoing funding, these companies will act in the best interests of the NDIA rather than the clients. These assessments are currently carried out by an independent and highly qualified professionals who seek to make assessments a true reflection of a person’s functional capacity from having a longer (often years), deeper association with the participant.

• These “independent assessments” will not be reviewable decisions. An assessment of a person’s functional capacity and their eligibility to enter the NDIS will be determined by a NDIA contractor with no right of appeal. From my own experience as having to appeal wrong information that was allowed through by a faulty IT system and then reviewed which still has many of the same errors in place – basic errors such as Names and relations, adresses etc that were supplied correctly, I am highly concerned that there appears to be no clear process to adjust errors or misunderstanding or in fact just plain mistakes. There was also bias from the original planner to medicate my son rather than follow the advice provided by my son’s team of service providers which was changed in the review process.

The Independent Assessments proposed are inhumane, unethical and flawed and should not replace reports provided by independent professionals with a deeper understanding of clients.

I welcome the opportunity to provide input into the Senate Inquiry into independent Assessments