But that’s where my enthusiasm for the NDIS ends.
It claims to be a new way to support people with disability. Allegedly, for the first time, I can choose what I need. Something I consider both complicating and confusing.
As much as I will continue to avoid having a militant attitude I am dedicated to demonstrating the neglect people with disability go through. The description of the NDIS are just words to me. This is because it sounds similar to those frightening three letters ISP (Individual Support Packages).
ISP claimed to offer individual support and choice. It went on promising greater flexibility supposedly to meet your needs. In my case I would look to increase my personal care hours for a start. Then I would look at upgrading the equipment I needed. I didn’t even get that far. The funding I was entitled to only covered my current personal care schedule. I was ineligible for more hours and there was nothing left for anything else. Eventually I found out I could obtain some equipment with an ISP. In arguably one of the worst meetings I have ever had I was told, in my home, I could get funding for equipment. All I would have to do is reduce my personal care hours per week to save up the money. Needless to say I didn’t take up their so-called generous offer and am still waiting for ISP to give me something useful. It’s because of situations like this that a familiar saying when planning for people with disability is “you have choice, providing it's on the list in front of you.”
This is where NDIS concerns me. ISP is just one of the many initiatives that have let me down. State Wide Equipment Program, case managers, employment services, it goes on. NDIS appears to be oblivious to all this.
If I am asked what I want my response is for Sting to win the WWE title, JuiceXT to become MCW tag team champions and Saxon to tour Australia. Let me be clear that all that is important but it is to deflect away from my disability. This is because the question what do I want scares me. Will the NDIS allow me to create a life with attendant care hours that are flexible to my needs on any given week? Can I receive physiotherapy, hydrotherapy or whatever other therapy I may need in the future? Will I be able to get equipment I need within a reasonable timeframe? Does the NDIS planner understand the sector and therefore will encourage me to ask for more? I have two years to contemplate all this but I have low expectations and can’t wait for it. Everyone I trust in the disability sector tends to agree telling me “don't expect it to change your life.”
I have much more to come on this but it would be nice to know that the NDIS provided guarantees. With there already talk of decreasing the budget there is already compromise occurring. This again makes it seem like it’s going to be full of false promises and that’s never a good sign. NDIS could very well be history repeating itself.
And this is probably my biggest fear.
The way it’s been presented it’s like I’ve been asked to ignore my life to this point. A common phrase now in the disability sector is to be NDIS ready. Organisations are scurrying around worrying about what this means for them. Supposedly they may lose business. This deserves more attention but simply I don’t know what the worry is because NDIS won’t mean less people with disability. So I believe most agencies are pretty safe. A genuine question though is will there be the same effort put into getting people with disability NDIS ready? I certainly hope so because I have absolutely no shame in saying I am not ready for it and I don’t think it’s fair that I should be.
I’m sure I’m not the only one that feels this way.
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