Committee Members

I’m writing regarding the proposal for a New Independent Assessment Tool under the NDIS and the impact this new model would have on my son

My son is 40 years old and now lives on his own in a flat that my husband and I purchased over 10 years ago with the aim of securing his future after living in shared accommodation with other people who had disabilities. My son has Autism, Intellectual Disability, High Anxiety and a complex Bowel disorder. He requires routine and at the same time flexibility with his support staff to continue providing his daily life needs, ensuring his safety, health and wellbeing. My son loves participating in his community with voluntary work, work through supported employment and swims regularly at his local pool and competes in ocean swims.

Whilst It can be seen as my son has achieved a lot, this has been over an extremely long period of time and constantly requires monitoring and adjustments with ongoing supports from my husband and I and equally important today and in the future from support staff. He can present as being capable however when he is overloaded such as sensory, social, excessive communication, extreme pain from his health issues, and unprecedented changes across all areas of life he will become extremely anxious and start to yelling, pull faces becoming totally confused and has periods of being depressed.

Due to his Health disorder, he has regularly appointments with specialists in Melbourne, and local doctor. Because of his disability and complex needs he requires support staff to transport him an accompany him to these appointments to ensure the specialists are fully informed of how he is managing and explain to my son what the specialists are asking him to do and how this will be achieved. My son would not be able to ensure his health and wellbeing without these supports.

As he lives on his own, he also requires support staff to assist with his daily routines and asks to maintain and continue his goals and needs.

My son wants to do things to his best ability and enjoy his life, he does understand he needs help to do this. However, he does not understand without this support how that would impact upon him.

Every year doing his plan we have had to request an Internal review due to reduction in funding to meet his goals. This year as one other year we are having to go through External Review (AAT). It is and has been extremely hard to ensure my sons goals are meet and obtain what is reasonable and necessary.

This new proposal of Independent Assessment tool

would I believe CUT OUT WHAT IS REASONABLE AND NECESSARY. Whilst the new Tool is to look at a person’s abilities it DOES NOT ask how he achieves these tasks; Does he require supports/direction, will he need to continue with these supports to assist with his growth to learn and maintain skills.

My son would answer yes to all the question without understanding he cannot do these activities without support staff.

Generally, when we have a planning meeting, he sits there for approximately 10 minutes then leaves as he is overwhelmed by the information and becomes very anxious. He will however indicate he loves living in his own flat an wants a holiday. We have always provided documents from all his specialists to support his funding requests.

To sit in front of a person who has none or little knowledge of a person with Autism, Intellectual disability, mental health issues and complex health needs an answer questions by ticking a box is absolutely absurd to truly say you have sufficient evidence to determine what my son requires to live a productive life and NOT accept evidence from specialists with whom my son has worked with for over 10 years is also to completely belittle him and state he does NOT deserve to live a fulfilled life. Funding to be based on a score is to literally put a person in a box of Deserving and NONE Deserving

It frightens me greatly to think at this stage in my life after years of advocating and fighting I cannot feel certain my son will be supported ensuring he has a quality of life he is entitled to and a life that he Chooses as is his Right.

If this new model goes ahead, I can see my sons funding reduced and he will lose a big chunk of his support staff. Sadly, this would result in him not continuing to live in his own home but having to return back to shared accommodation under the Government. Presently NDIS don’t have to pay for any of my sons living expenses or his home expenses however, he does require continued sufficient funding for support staff. It would also cost the government 3 times more than what they are currently funding for my son.

I suggest that NDIS provide funding for participants to obtain reports from therapist/specialist with whom the participants have been working with and in some cases have a long history to provide accurate evidence base details of what the person requires.

To withdraw their contracts for Independent agency to oversees the Assessment model and to restructure and build a new Framework within the NDIS.