5th September 2019
To the Joint Standing Committee on NDIS,
In relation to Sil inquiries; My name is Jane Wyatt, a mother of two sons with disabilities and I live in rural NSW. As a parent I am grateful for the NDIS and for the government trying to make it better for everyone. Although my son’s plans have now been sorted after many, many meetings, many uncertanties and many, many letters and phone calls. I have tirelessly contacted officials from the Minister’s office to the CEO of NDIS out of desperation to get their attention and point out there are still things that can be improved. Especially when it comes to participants with High and complex needs. My 32 year old son has profound intellectual disabilities compounded with health issues, mobility difficulties and complex behaviour. His Supported Independent Living Plan was approved in June 2019 with myself managing it. I fought hard for this outcome knowing from bitter experience it would be the best and only acceptable long term solution for
What is working for now: SIL Model (Complex)
Self Managed: (by a nominee who knows the participant well and has the participant’s best interest at heart at all the time). This is very crucial for someone with severe and complex disabilities like my son. When a participant with high and complex needs is non verbal and the cognitive ability of a 16/18 month old infant it is very important for the participant’s plan to be managed by a very strong advocate/nominee who knows the complex and convoluted issues the participants care needs and quality of life demand. This is where the importance of the Choice and Control becomes so critical. Unfortunately for my son we had
several bad experiences with service providers that severely impacted him and his health and outcomes. From my past experiences I am a fierce advocate that a primary family member, capable of meeting the challenges of performing the task should always be the first choice instead of a commercial / NGO / NFP service provider. I understand the importance and good work done by many of these enterprises but that most certainly do not meet the needs of all. I feel it is very important that whatever is in place has a high degree of flexibility in making changes as needed to CB daily activities etc. That way what is working can be improved and what is of little value can be modified and funds put to better use without waiting for a yearly review.
The NDIS is a wonderful thing, it has been a life saver for many families including mine. As a mother I am so grateful for being a citizen of this amazing country. With the help of the NDIS my 19 year old son is now doing a film editing course and working as a volunteer at a local dairy farm to help with his social and relationship skills. He is also learning the benefits of working and contributing to his community. The changes in on every level have been profound in the space of a few years. With the continuous intervention, help and support, I am confident will become more independent and live a fulfilling life. The hyper-focus that is a trait of Aspergers is now channelled into his film editing and he is a standout pupil. He is living proof the NDIS is achieving its goals. With the NDIS, my older son (with the profound issues) is improving. He has a highly dedicated team of carers, young guys closer to his age who truly care about him. It has been a long hard road but he is now well settled, happier than I have seen him for a very long time. He is another success story and proof the system can deliver what is needed…… Thank you from all our family.