Weekends can be hard.

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As a person with a disability, I feel incredibly fortunate to have access to NDIS supports. I don't take that for granted.

I remember the day I got my NDIS approval letter. It was life changing. It came after a long and expensive fight, including repeated hospital stays.

Without that decision, made by government more than a decade ago, my family's life would look very different.

Right now, I rely on about 25 to 30 hours of support and therapies each week to live independently. That support helps me live an ordinary life.

It is what allows me to work, spend time with my family, volunteer on boards and, in very real terms, stay out of hospital.

Further cuts to the NDIS will be announced this week. That makes me more scared than angry.

With the right supports in place, I can earn a living, contribute to my community and be present as a husband and a father. That matters to me. It is the difference between having a life and watching it pass by.

That is why the current conversation about cutting the growth of the scheme worries me.

When governments talk about reducing growth, they are not talking about abstract numbers.

They are not talking about money in people with disabilities' pockets. They are talking about cutting things that help us get out of bed. Shower safely. Leave the house. Stay in work.

If those supports are cut, people do not just adjust. They go without.

This month has been particularly tough for me. Pain and fatigue have been building. By the time the weekend arrives, everything catches up. That is when I think about what life would look like without the supports I depend on. Physiotherapy. Psychology. Support workers at home and in the community.

Without those supports, I could not continue as I do now.

Without them, there is no me as people currently know me. No work. No ability to lead or volunteer. Less time with my family. Less stability. Less hope.

That is the reality behind the numbers.

It is also why the scheme is growing. More people are coming into the system because need was always there. We are just finally seeing it.

Treating that growth as a problem to be cut risks pushing people out of the supports that keep them safe and connected. It does not remove the need. It shifts it somewhere else. Often to hospitals, families, aged care and crisis services where it cannot be absorbed.

There are parts of the NDIS that need to work better. I know that firsthand. I have had to fight, prove and re prove my disability. It is exhausting. It is often undignified.

It should not be that hard to get the right supports in place.

That is where reform should focus.

Make decisions faster. Make them clearer. Reduce the need for people to go through the same process again and again. Make sure supports actually work in real life.

The NDIS works. I am living proof of that.

If cuts occur I could lose my ability to live safely in my home, to be with my family, to work and to contribute.

Those are ordinary things a lot of people take for granted.

That is what the NDIS makes possible.

That is what is at risk for over 700,000 Australians if cuts are made.

Jeramy Hope is the president of People with Disability Australia, the national advocacy and representative organisation led by and for people with disability.

I am living proof of the NDIS's value. Now I fear it will all be taken away

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