National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 163

To whom it may concern

This will not be well worded as I am currently in a period of autistic burnout and in bed with a dysautonomia flare. I cannot not have my say on this though, as I am an NDIS participant, parent to NDIS participants, friends with NDIS participants, and dating an NDIS participant. The NDIS is deeply interwoven into my everyday life and that of many people I love and care for. So I am getting some help to write this now.

I have spend many, many years fighting and spending countless thousands of dollars to get myself and my children the support we so desperately need. Since being on the NDIS we have been able to begin repairing some of the damage of years being left on the sidelines as less than human, second class citizens, not afforded the dignity of choice and equity of access to a basic standard of life and opportunities equal to those of non disabled folks , in a society which is still set up to our exclusion and harm.

Even still, we battle every time there is a change of circumstance with extended timeframes blown out from the NDIA own legislation, planners and LACs who are not qualified to interpret and assess the reports from professionals which are worth thousands of dollars, explaining in detail our support needs. It take so much mental, emotional, and physical energy to constantly demand to be heard and listened to, to be demonised, to be presumed guilty of goodness knows what kind of terrible fraud for simply asking for basic support needs to be met, which usually cost more than some of the other things NDIA would prefer to fund.

We MUST be listened to! Our treating professionals MUST be listened to! We MUST retain and increase choice and control! We MUST be allowed to chose our providers and choose how we spend our funding to meet our support needs, as often these will fluctuate and there may be months where for eg. I require daily personal care, and then other months where I can get away with twice weekly but increase my social and community access support needs. My equipment needs may change and it is not reasonable to wait 12-24 months for new equipment.

Most of us want to contribute to society both socially and economically and we can do this very well with appropriate supports, but politicians sitting in Canberra do not understand what those supports are. Only WE and our own treatment teams do.

I can speak to the economics and say without a doubt that the area where money is going down the drain is agencies. Businesses are pocketing millions of dollars in administrative fees to deliver NDIS services. Individual support workers and therapist are not the issue. Agencies are charing participants so much money while paying staff minimum wage, and delivering subpar services. This also impacts choice and control of participants as well as reliability of service. For myself and my family, we need to have consistent support staff, not just whoever can turn up. We must retain the right to self manage our plans and choose providers who are not NDIA registered who meet our individual needs. NDIA registration costs are prohibitive to small providers.

I beg you all to listen to disabled people and not lies and propaganda spread to further a political agenda! I am a person of value. My children are people of value. And although it shouldn’t come down to what we can offer back, the economic argument remains: what we can offer when we are well supported is great, and honestly probably far greater than your average non disable person, because we know what hard work and determination are.

Please don’t let this Bill pass. It’s a violation of our human rights!

Sincerely, Brogey Harrison