Submission 2233

SENATE SUBMISSION

NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission due: Friday 29 May 2026

About me My name is Paul O’Donnell. I live in Evatt ACT. I have Cri du Chat syndrome. I cannot read or write so my Parent/guardian (Vince O’Donnell) is writing on my behalf. I am an NDIS participant. My NDIS plan helps me live independently in my own house owned jointly by myself and my parents and this is my story/experience with the NDIS.

What my NDIS support means to me The support I get from the NDIS allows me to work in supported employment with LEAD Disability where I am in a garden maintenance team. I have been doing this type of work since I left school over 20 years ago.

Being part of a team is important to me as I make a contribution to the community while interacting with others.

When first diagnosed with Cri du Chat syndrome, my parents were told I would not walk or talk, would likely have significant health issues and would be un-educatable. Thanks to a very supportive family, early intervention that was available at the time and support through school (I had a teachers aide assigned to me ) I was able to attend ‘mainstream’ school through to year 13. Although I still cannot read or write I have developed other skills that enable me to live a productive life.

The NDIS also means I can live independently and undertake physical/sporting/social activities which provide socialisation and physical fitness.

What I am worried about The Government wants to change the NDIS. Some of the changes worry me(my parents as I’m not really aware of what is happening to funding) in particular those proposals to cut funding for social and community participation. The funding cut The Government has indicated it wants to cut the funding that helps me maintain participation in community activities by 50%. That means I might only be able to do these things half as much as I do now or not at all.

Without my support workers and the NDIS funding I would be stuck at home by myself and most likely spend a lot of time watching television. As I cannot read or write or tell the time my support workers are an essential part of my life.

In relation to my activities outside work, i.e. basketball, ten pin bowling and outings, I always pay my own way. The NDIS only provides funds for the support worker to accompany me there and back and support my needs.

Submission 2233

I believe these activities are essential for my physical and mental health which would be reduced if funding for these activities is reduced.

My day program I my activities

My work day begins at 7 am each day (Monday to Friday) when one of my support workers drops me at the depot after assisting me to pack my lunch for the day and ensure that I have had breakfast.

After work (2:30pm) I then catch a bus home.

In the evening I have a support worker assist me cook dinner and clean up after. This is about 2 hours per evening which is the minimum engagement time for support workers.

On Tuesday’s I catch a ’care’taxi to my special Olympics basketball training then my support worker picks me up afterwards and helps me with preparing dinner.

On Saturday morning I play in a tenpin bowling league for people with a disability. Once again, I catch a ’care’taxi to bowling. After bowling a support worker picks me up and assists with getting my lunch before taking me to a Mens Shed where another support worker assists me with projects.

On Saturday and Sunday evenings I often have dinner with my aging parents who live nearby. However, when they are away, I need a support worker to assist me with cooking a meal etc.

On Sunday lunchtime a support worker helps me with other recreational/community activities for 3 hours. This time allows me to either visit places of interest, go shopping, go to the movies, bike ride, swimming or go to festivals that may be on around town.

If my funding was cut, I would need to reduce my activities. I do not want to stay home all the time. I want to be part of my community like my siblings and others my age.

My support workers

My support workers are employed through ‘Limitless Strategies’ who have done a great job finding suitable support workers for me.

They know how I communicate and what I need to be safe. It has taken a good deal of time to find the right mix of support workers.

If my funding was cut, I might not be able to keep them.

I moved into my house over 5 years ago which I love as it gives me independence and responsibility. Without adequate support from the NDIS I would not be able to continue and my future would be less certain.

Submission 2233

When developing each of my NDIS plans over the years we (with the help of my support coordinator/plan manager and my parents) have always kept the request for support to what is minimal but essential.

What I want I am asking the Senate Committee to:

• Not cut my social and community participation funding.
• Make sure I can keep going to my supported employment and community activities.
• Listen to people with Cri du Chat syndrome when making decisions about the NOi$.

I am now 41 years old and although I have 3 sisters and an extended family they all live interstate and are unable to assist my parents in supporting me. At present I am in reasonably good health and hope I can continue to maintain good health in the coming years. As my parents age I will be relying more on the continued support provided by the NDIS.

Note from parents, we have written this submission on behalf of Paul because, apart from not being able to read or write, it is difficult for him to comprehend issues relating to funding. He is currently very happy where he lives and interacts well with people around him and his support workers and to a degree feels like other people his age. Although the reality is his condition is not going to change yet whenever we have a plan review we still need assessments from an Occupational and/or speech therapist as ’evidence· of his disability. For conditions like Cri du Chat he will never be ‘normal’ which is a huge burden on his family.it is always a worrying time whenever we need to go for a plan review as over the years it has not been consistent and those doing the assessment don’t appear to be interested in Paul the person.

We appreciate the need for the NDIS to be sustainable and would like those who are rorting the system to be prosecuted. However, our fear is that some of the cuts proposed may have unintended consequences for people like Paul and increase the uncertainty for us as we try to set Paul up for the long term and for when we are no longer around.

Sign-off Yours sincerely,

Suburb/ State: E. v k –r,– / A- C–, I

Email: Phone: – Publication preference: I am happy for my name to be published with my submission