Fear of losing lifeline supports due to funding cuts

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12/07/2024

Dear Senate Community Affairs Legislation Committee,

I am writing to express my serious concerns about the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.

As a person with a disability who is on the NDIS and who works with clients on the NDIS, I believe this Bill could have a detrimental impact on the lives of people with disability and undermine the original intent of the NDIS.

The NDIS has changed my life. I have gone from not being able to work at all, to working as a part-time Support Worker with clients who are on the NDIS themselves. I have studied and have future plans. I have seen the benefits of the NDIS in the lives of my clients and felt it in my own life.

It is my lifeline, without it I would still be sitting at home unable to cope, depressed and anxious and with no hope for the future. I rely on my supports so much. They help me keep on track, support me with things that I can’t do, take some load off, help me see a future and how to move forward, and are there when I need a cheer squad. Without them I would be curled up in my bed crying.

I am so scared that my supports will be cut and I will lose my lifeline. I have already seen it happen to my long-term clients who have had funding arbitrarily cut, and who have conditions that won’t

improve or change, but for whom the NDIS is their everything. Their

lives, physical and mental health suffer.

The NDIS is life changing and it should be seen for the value it adds

to people’s lives, not for the monetary cost. IT can save money

too because with NDIS help, people find hope and support, their

health and lives get better.

I am particularly worried about the following aspects of the Bill:

    1. The shift from 'reasonable and necessary supports' to

     'reasonable and necessary budgets'. I fear this change could

     lead to arbitrary limits on the supports people can access,

      rather than focusing on what each individual actually needs to

       live an ordinary life.

    2. The tighter definition of what supports the NDIS will

     fund. I am concerned this definition is too narrow and could

     exclude vital supports that people with disability rely on to

      participate in the community and pursue their goals.

    3. The increased powers for the NDIA to require people to

   undergo assessments or provide information, with the

    threat of plans being suspended or revoked for non-

    compliance. This fails to recognise the many barriers people

     with disability can face in engaging with bureaucratic

    processes, especially if they are experiencing a crisis or have

   complex needs.

    4. The provisions that allow the NDIA to prevent a person

  from self-managing their funding if they have made

mistakes in the past. This seems to go against the principle of

choice and control that is central to the NDIS.

Please consult with NDIS stakeholders to see what WE want and need. You can make us or break us. Nothing about us without us is paramount or it won’t work for us. I am so scared that I will lose the thing that not only keeps me afloat but helps me to live my best life.

Overall, I am deeply worried that this Bill represents a shift away from the original vision of the NDIS - to give people with disability choice and control over the supports they need to live an ordinary life. It seems more focused on cutting costs than on improving outcomes for people with disability.

I strongly urge the Committee to recommend significant changes to this Bill. At a minimum, there must be thorough consultation with people with disability and our representative organisations to ensure any reforms genuinely meet the needs of the people the NDIS is intended to support.

The NDIS is too important to get wrong. We must take the time to get this right, with people with disability at the centre of the process.

Thank you for considering my submission. I would be happy to provide further information to the Committee if required.

Yours sincerely.

Have a happy day,

Joanne Villani