Submission to the Joint Standing Committee on the NDIS

Katelyn Woodham

The following submission is a public submission.

I am happy to attend a public committee hearing.

My submission relates to my experiences of engaging with the NDIA to ensure my 2 children living

with disabilities have access to the reasonable and necessary supports that will allow them to live their best lives.

Although the initial process of accessing NDIS funding was relatively straight forward, a subsequent review process created considerable difficulties and angst.

This review process lasted for over 12 months. During this time there was no funding for my oldest son to receive supports. This resulted in him not being able to continue with his speech therapy and occupational therapy sessions. As he has regressive autism, this gap in service resulted in a marked deterioration in his speech. Although he was using 25 words at the time of his diagnosis, he is now non-verbal. This loss is irreversible. The change in his language capacity is devastating for me and will have life-long impacts on his quality of life and capacity to achieve goals. It is frustrating to think this could have been avoided if the review process had been completed within a reasonable timeframe.

Throughout the review process I continuously made contact with the NDIA to enquire about the progress of the review. Each time I was told the LAC was unavailable. The lack of communication from the NDIA, and my need to constantly contact them myself, required a lot of my time and energy. This process left me feeling exhausted, abandoned and battered. Eventually I contacted a manager and the review process was completed within a week.

Unfortunately completing the review process did not mean an immediate re-instatement of supports. The gap in accessing services resulted in my oldest son being put on the bottom of the wait list for an occupational therapist, meaning he had to wait even longer for support.

My experience of trying to secure extra funding from the NDIA for the changing needs of my children has been another stress. Eventually I found it necessary to ask for the support of an advocate from the Rights, Information and Advocacy Centre to help me secure funding for the supports my children need.

My requests for equipment such as a pram, a harness and a car seat were questioned by NDIA staff. It was suggested by NDIA staff that this equipment was restrictive. I was not informed that I would need a behavioural specialist report to receive funding for these items, nor was there funding within my son’s plan to allow me to obtain specialist reports.

Eventually I was able to obtain a report from a behavioural specialist. This report states that my son requires 24-hour care and respite care. As a single parent managing alone with a non-verbal and incontinent child who is diagnosed with autism, an extreme behavioural disorder, and ADHD, extra supports and respite are vital. However, when contacting the NDIA I feel that the staff do not have any understanding of what it is like for me, nor do they appreciate the impact on my mental health of caring for my son and his younger brother who was born with only 1 eyeball and is also in the time of being assessed for autism. They give no indication of having any understanding of the workload of having 2 special needs children. This lack of understanding causes me to feel frustrated and angry.

The staff at the NDIA have often dismissed my concerns and have stated that caring for my children is not the responsibility of the NDIA. It was devastating to be told this. I am not trying to abdicate my responsibilities, rather I am trying to put in place the supports that will mean my children can have quality of life. Without support I cannot take my children to social activities nor attend in person

• doctor appointments for them. Further, I do not believe that staff take the time to read my son’s file before speaking to me, as they have said that my son’s needs are no different to the needs of any other 6 year old. It is frustrating to face comments such as this that lack knowledge and understanding.

Although I am currently able to manage my oldest son’s aggression as he is only 6, as he grows and becomes stronger I realise that I will not be able to manage his physical behaviours. I worry about the future and want to set up supports for his long term wellbeing. The comments from NDIA staff suggest that the concerns I have for my children’s future wellbeing are of no concern to them. I feel like they do not take me seriously nor do they validate my concerns. On one occasion a NDIA manager told me “If you don’t want your son, drop him off at the police station and tell them you don’t want him”. This comment felt enormously insensitive. It was an inappropriate response to my pleadings for support and help to manage the complex needs of a 6 year old child. I have at times ended up crying and begging for help from staff who seem completely unmoved by my distress.

Caring for 2 special needs children is time consuming and exhausting physically, mentally, and emotionally. However, the lack of understanding and support from the NDIA has added to my stress. The lack of communication has been frustrating, and the insensitive comments that suggest staff have not read my children’s reports and are not aware of their diagnoses, are hurtful and leave me feeling depressed.

I would like to see the following changes in the capability and culture of the NDIS -

• Employ staff who have an understanding of the experience of caring for special needs children

• Ensure that staff have a full understanding of each case they are involved with and have read all relevant information and reports before speaking to clients and their families.

• Be more transparent about the process and procedures around plan reviews.

• Communicate more openly and regularly, being available to talk to clients, not requiring clients and their families to leave messages and hope someone will get back to them.

• Take requests for help seriously.