Submission 2047
My name is . I am a mum, Carer, Communication Partner, Team Facilitator and Advocate. Saturday 30th May, 2026.
I will be 62 in a few months. My son is 34 years old who needs 24/7 support to keep him safe to continue to live in his own home, to work (yes he pays tax), bike ride, garden, swim, COMMUNICATE and do pretty much the things you and I might do. He does NOT want to live in a group home with others who are strangers and who are hugely impacted by policies and procedures. I have the benefit of having known my Aunty my whole life who was supported by my Nanna from 70+ years ago to continue living in her country home town when it was common to send people with an intellectual disability to institutional care in large cities to live in institutions. She and 4 other mums took it upon themselves to fundraise to employ a teacher when the schools refused to educate their children. One of the mums had a spare room which was converted into a classroom for the children to continue their learning. Once they became young adults and again the parents were encourage to ‘send them away’ they took on guidance to support their children to live in a group home. This was at the beginning of a very new approach by governments to move people out of institutional care. Despite my nan and her friends hope and hard work of fund raising for their now young adults to buy their home to live in, it instead became a home for staff who dictated the terms and conditions of what happened in their home rather than the people who live there. Research has shown that group homes have not lived up to their expectations and that to have a home in our communities does not equal choice and control. Group homes have become smaller institutions and the only difference is they are now next door to you and I in our suburbs.
My son has also been supported by myself and his dad (who is now too unwell to provide supports) to live a full life despite the lack of supports for someone who cannot speak using words, who uses a wheelchair, has complex sensory needs and a complex seizure disorder (as a young child seizures could last for up to 6 hours). needs support 24/7. Because we had a firm belief that he has a right to be part of our family and his community we worked hard to support him to be educated with the limited tools we and his school had in mainstream schooling, to play and do sport as he grew older, to work in open employment, to help him maintain his friendships ( makes friends easily but when you can’t pick up the phone to call a friend of course you need help) and so on.
It is only for the past 10 years (remember he is 34 years old) we were introduced to what a speech therapist would term as a robust communication system by another parent - pre NDIS we couldn’t find a speech therapist to help us and so I learned from another mum, I bought the program and learned how to communicate and model AAC to give my son a voice who couldn’t use it for 6 months because he was so shut down and didn’t trust that this wasn’t going to be just another gimmick which would soon disappear. When he did use it he told me to ‘hurry up’ ‘go away’ ‘that’s all I’ve got to say about that’ and ‘stop/wait’ - he at long last had a voice and had some power over his environment. Despite the late start in providing this essential and life saving tool giving him autonomy to make his own
Submission 2047
decisions - he is using a 20 per page PODD (Pragmatically Organised Dynamic Display), an Alternative Pencil and other forms of communication such as his voice to make sounds we mostly understand and body language - now that he trusts his team to respond and ensure his devices are available to him ALL THE TIME uses many ways to speak because he will be listened to and supported to do what he wants to do.
access to his communication and alternative pencil has been made possible by selecting the right people to work with him. We do this by following a process with his Microboard (a microboard is made up of a small group of unpaid people who are in relationship with him - family and friends who support him to have the life he chooses).
Without this he will be destined to have his communication devices shut away in a cupboard and a staff roster suited to the staff rather than for his needs.
and I know this as we meet our friend once a week who lives in a group home and just about EVERY week he has a new staff member who does not know his communication system or styles of communication and does not have it with him unless I ask where it is.
Before we had knowledge of these multi-modal communication styles that uses he and we were floundering with his health - there were more hospital admissions for uncontrolled seizures and what the doctors termed as a mystery illness where body couldn’t move, there were more behaviours of concern - would sit in a hot car in the middle of summer unable to get out of the vehicle, would bite, pull hair, break his bones and so on. ALL of these things have stopped now that he is supported by the team of his choice who are prepared to learn to be communication partners and listen and respond to what is saying.
The proposed changes to the NDIS are dangerous for my son. He will NOT be safe and will be destined for a life of barely existing to be fed, housed and clothed rather than participating as a full citizen of Australia.
THIS MODEL WILL COST MORE IN THE MEDICAL SYSTEM - WE KNOW BECAUSE WE’VE BEEN THERE!
It has been hard to hear the demonising of our children which also puts me as his mum in the demonic category as we are apparently sucking the system dry with our fraudulent behaviours.
I believe I am a responsible steward of government funds. I have refused supports from agencies who do NOT have the skills to support my son in sensory and communication needs at their chagrin that I should even consider to refuse their most excellent services - with all due respect my son and I have had the benefit of the lovely young graduates who visited our homes many times over with a beautiful will and energy to assist but that simply is not enough. I’ve had a speech therapist strongly recommend another communication system once we’d
Submission 2047
introduced PODD to . Not only does this demonstrate a lack of insight and professionalism by the person, my refusal to spend MORE FUNDS on YET ANOTHER SYSTEM - setting up A NEW system is not only DISRESPECTFUL to who was making great gains at the time with PODD but also becomes another expensive item for the NDIS to fund. Imagine beginning a new language all over again and the costs associated with that.
Ps I paid for the original PODD program which we still use today (CD disc on an old laptop which will need to soon be replaced with their online subscription as the CD will not operate on new equipment).
As seizures are now more controlled as a result of not being bored and is working, learning, socialising, doing regular activity etc and is being supported in the ways he needs he has significantly less hospital admissions. can also tell us more about his health and when he needs help i.e. when he needs pain medication, when a tonic/clonic seizure is coming on (we can prepare him to help stop him from breaking bones) and so on. This is in and of itself a huge saving to the medical system.
Despite being told that he would lose the ability to transfer using his legs by age 7, continues to transfer with a supporter setting up the environment - wheelchair, chair, table - safely. When he went to 4 year old classes at a special education school which was not in his home town they immediately made him use a hoist. Luckily he did not go to the school and instead attended mainstream schooling where he continued to move his body which has stood him well as he only requires a hoist at those now rare times he is unwell and unable to move. This is another huge saving to the NDIS as the level of the support using two people to help with transfers plus the equipment he’d need is NOT required as most I know who have the level of physical disability he would otherwise have experienced should a school have maintained hoist use from age 4.
I implore you NOT to make changes which will push my son back into the dark ages where he will become unwell with uncontrolled seizures again, become more physically reliant on equipment, and not have access to his voice (communication devices and his communication partners).
relies on the NDIS to stay well, be safe, be autonomous and independent of others using his voice, to contribute to his community by volunteering, to work, to be a friend, son, brother, uncle, work colleague and more, to continue to be a life long learner, join in sports and to be a full citizen of our beautiful country.
He smart - my son correctly wrote our friends name…. (pronounced ) and every single person I know writes her name incorrectly but my son got it right the first time he wrote her name, has a great sense of humour, is kind and brings out the kindness of others, he’s a valued and respected friend and work colleague who is also a great secret keeper (they tell me how he positively impacts on their mental health), he’s shown what’s possible for inclusion, is keen for jumping into life (only recently his Neurologist explained he has seizure activity in his brain all the time
Submission 2047
even though we can’t see the outward signs of them), is full of energy and is only restricted by those around him who is part of our wonderful and diverse community.
Since the NDIS which has only been a short few years for us as we are in Western Australia and were some of the last who were onboarded we’ve had some grit to get our teeth into to create the team to support who are there to learn, listen and act. As I am now older and have developed a significant health condition I cannot go back to support as I did before the NDIS. Anyway, he’s clear he doesn’t want his mum with him more than to be connected as his mum and not a carer.
PLEASE OPPOSE THIS BILL.
As you have read we have worked hard for many years despite the lack of supports. The NDIS was a positive development for my son in the immediate moment and something Australians could be proud of and rest well in the knowledge that from birth to death there is a safety net should they ever need it.