SUBMISSION TO AUSTRALIAN PARLIAMENT; NDIS BILL AMENDMENTS
July 12, 2024
INTRODUCTION
I am the 65 year old parent of a 28 year old young man who loves life. He currently lives by himself in a community subsidised wheelchair accessible rental home with his dog, and receives 24/7 one on one supports through the NDS which enables him to live a life of choice and control. He has friends and family who love him, and spend time with him, and are enriched by his presence in their lives, as is the local community where he lives in the suburbs of an Australian capital city.
His disabilities initially occurred following the in-utero death of his co-twin at 34.5 weeks’ gestation. He has never known life without disability and he has always loved life. He has complex communication needs, complex medical needs and complex physical disabilities which include spastic quadriplegia type cerebral palsy, cortical visual impairment, thermoregulatory disorder, severe scoliosis, GORD and more. His needs are complex. With appropriate supports, he lives a full, active happy life: playing AFL wheelchair footy, sailing, advocating for young people with disability, working on committees and one off projects to improve the access to inclusion and participation of people with complex communication needs in society, attending music and comedy and theatre shows, connecting with the people he cares most about and advocating for those whose needs he understands very well. He is a compassionate, capable, passionate, generous loving son, brother, grandson, friend, worker, who works hard to achieve meaningful goals in his life. We often hear, “He teaches me so much!” “THANK YOU for sharing that insight with us.”
The comments I make in this submission are guided by communication that our son has shared with us through his natural behaviours and use of his AAC.
I am writing on the final day of submissions because, challenging as it is to be ‘fighting again’ for the rights of our son who live an ordinary life of his own choosing, I cannot NOT put forward, yet again, the deep concerns we have for our sons ability to live a life of his choosing. I don’t want to be doing this AGAIN ….. it feels like this has been my life’s ‘work’ (and I regret the time and energy this work takes away from me simply being a mum to my son) ….ever since he was born, but I must speak up.
What concerns us about this Bill?
1. That genuine co-design process is not embedded in the Bill. Meaningful co-design is essential for participants to live the ordinary lives they need.
2. The lack of recognition of the needs of the whole person. Our son's needs are far from limited to his 'main' disability. To fund a participant on this basis for our son would be life threatening and have a severe rapid negative impact on his mental health.
Concerns re participants’ rights in the planning, review and appeal processes.
Participant voices must be heard and valued and responded to.
The broad powers of the Minister, NOIA CEO and organisation that might be possible under this Bill are frightening and distressing to participants and their families.
The whole area of assessments and what that could look like is scary. The idea of “ independent“ assessors. Our son, and other participants, don’t fit into cookie cutter boxes. The allied health professionals who work with him, over a number of years, are well positioned to assess his therapy and equipment etc needs.
Decisions that can be made arising from the Bill if legislated: e.g. Set limits on funding packages.
Each participant and their needs and goals and vision for their lives are unique. In order to engage in paid part time or volunteer advocacy work our son needs highly individualised supports from highly trained, specialised support workers. This means they need to engage with him 1 on 1 to support his communication: his voice. This leaves much less time for support workers to be engaged in tasks he is unable to complete such as household cleaning.
Set limits on ratios of support workers to participants. Without 1 on 1 support, and with the 3 on 1 support the Minister has referenced, our son would lose his ability to communicate to his capacity. At age 21, he gained access to an AAC system that worked for him when used alongside highly skilled therapists and support workers, but in a 3 to 1 support ratio, he would revert to being virtually voiceless again. There would not be time or opportunity for support workers to respond to his communication efforts in a timely manner, nor to help deconstruct the particular meanings of his selections using his eye gaze. E.g. examples we have documented: He used his PODD, on eye gaze, to select : Sore, doctor, go. He may have meant that before he went to the doctor yesterday he was sore …or he may have meant that he is sore now and wants to go to the doctor…or he is still sore even though he went to the doctor….etc. It matters to him that we unpack his messages accurately. It takes a highly skilled communication partner and time to help him to clarify his message. He lived in a group home from ages 13-18 years and had to resort to crying, screaming, yelling to get a support worker to come to him and to attend to his needs … and without AAC, the support worker would be guessing what he needed.
To provide a person with complex communication needs with AAC and skilled communication partners as he has had through the NDIS, and then take that away, is absolute cruelty.
Through the NDIS he has not accessed anything that he hasn’t needed.
He has not spent all of his allocated plan in any plan because the market is so thin and we struggle to find suitable medium to long term staff.
Yet, the gains in his independence and autonomy in choosing a life he wants to live has been enhanced so much by the supports the NDIS has funded and the staff he has been able to secure.
The NDIS was established for people like our son.
Don’t amend the legislation to enable future decisions which would force him to a life like the ‘dark ages’ where he had to cry to get his needs even considered.
Our son doesn’t speak with his mouth.; he uses AAC as his voice, but he needs skilled supporters around him to do this. Don’t take his voice away from him. It’s the thing he
values most in life. He’s the one who has spent hours compiling messages for his consultant doctors in hospital like , “talk to ME” when invariably they assume that he cannot understand because he cannot speak with his mouth.
Of course, there is much more I could say.
Please know that our son and his family have worked hard for 28 years on his behalf, and for others with disability, and we have learned a lot from our lived experience. His voice needs to be heard now and always.
Proposed Legislation like this Bill is very important in protecting his and others’ rights to a good ordinary life. Any loopholes are dangerous for his capacity to live his own life, just like other Australians.