Why I am apprehensive about the NDIS? Part 1

Bill Shorten is a God when it comes to disability. There are people who have done more, but politically he is unsurpassed. He genuinely understands what people with disability need. I once heard him speak and it was a revelation. He had worked out that people with disability are being held back by bureaucracy and a lack of funding and resources. He was clearly motivated by this because he initiated the National Disability Insurance Scheme (NDIS). For that I will be forever grateful to him. It gave national exposure to the challenges people with disability face.

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.

It’s not even a holiday

Paul and I really have been through it all. Whether it be Screaming Jets gigs, Melbourne Storm games or just hanging out, some of the best times we have had are with each other. Not even him moving interstate, eventually settling in Canberra, could stop our friendship.

Life, however, isn’t always about having a good time. Tragically, Paul’s son Jack was diagnosed with an inoperable brain tumour last May. While he courageously fought through it he recently passed away. He was only seven and if that doesn’t make you appreciate life then nothing will.

Without doubt one of the most challenging aspects of life is that it doesn’t slow down. Rather than take time to deal with this loss my time went straight into how I was getting myself to Canberra. Making sure my brother would be alright to make the journey with me the major priority. Too many assume this is because of the personal care I require. It is far more than this. My brother is someone I genuinely want to travel with, which reduces a stack of stress. I could go on but he would already think I have said too much. Then there was the matter of getting a motel, a van to get us there along with packing, etc.

I got most of this organised in short time. Unfortunately getting a van proved to be extremely difficult. Flying would be quicker and would make sense for most people. For me, though, this was not the best option. Unfortunately I am not allowed to sit in my wheelchair on a plane. This causes me major discomfort and I have generally had enough before the plane takes off. And we were still going to need a van when we were there, particularly on the day of the funeral, so that I could get to everything with a minimum of fuss.

It turns out that this is a busy time of the year if you want a wheelchair accessible van. My preferred choice, a company called Wheelaway, did their best to help but could not provide one. As frustrating as this was it was compounded by the amount of emails I received from friends suggesting them. It’s like they have cornered the market. Somehow I doubt they feel this way and probably wish there was more demand for their service.

By chance Gary (a man who knows too much about me) came over. I told him about the dramas of getting a van and he started typing ridiculously fast on his laptop. He was suggesting companies I didn’t know of. He then said he would make some calls for me. I was taken aback that he was genuinely going to take on some responsibility. He was annoyed that I don’t ask more of him so it was a win-win situation. After going through a reasonably long process it seemed that we had booked a van through Europcar. Of course when I check my emails the next morning the booking has been cancelled. I let Gary know and he responded with a selection of words that can’t be repeated. He was surprised that I took the news well and forcibly informed me that this wasn’t good enough. He was right. Unfortunately I don’t have enough people pointing this out to me. Pushing me further he said I should put my predicament up on Facebook.

Something I reluctantly did. This led to David Clarke, the CEO of my attendant care provider InLife Independent Living, passing on some more than useful contacts. First there was Cliff who came close to finding me a van. When this fell through he put me in touch with Naz who had located a van through Budget. I was able to book it for the time I needed it and then could finally move on to the countless other tasks I had to do. As an aside I enjoy using the term brotherhood and already with Cliff and Naz I feel I have become part of the spinal cord injury brethren.

All this means that my brother and I were in Canberra to celebrate Jack’s life. To be there for Paul and his wife Karyn as they went through something nobody should have to is something I’ll never forget. My brother and I both agreed that we didn’t know how they did it as we left Canberra emotionally and physically exhausted.

David recently asked me to write about my concerns in regard to the NDIS. I will get to that in time but this experience brings up a lot of what I think is missing. The disability movement (if there is such a thing) is gradually moving in the right direction. There is still not enough emphasis on removing the barriers. I would like to see a time where a service provider when hearing of this situation would say “We have a van for you. Now you get back to arranging everything else you need to do but if there’s anything else we can do, don’t hesitate to ask.” That would be an agency that understood people with disability. That would be an agency you could trust. Is that where NDIS is heading, I don’t think so.

And the backlash against inspiration porn goes on. I will be writing about this at length but I warn you unfortunately it’s not a turn on. I understand the resentment by the many disabled bloggers out there. What’s frustrating is what is deemed a priority in the world of disability. When we know that basic needs are not being met it's a struggle to comprehend why inspiration porn is getting so much attention. I wish other issues were being discussed as passionately.

Because sometimes we all need to get some perspective. I know that’s what Jack taught me. He will still be letting everyone around him know that the only teams that matter are the Canberra Raiders and Greater Western Sydney Giants. Just like myself he will be telling people that the best superheroes are Batman and Spiderman. And most importantly he will be telling me to stay focused because life is too short.  A part of that being to call his Dad to remind each other to have as much fun as we possibly can. Don’t worry Jack, not only will I do this for your Dad but I'll do it for as many people as I can, including myself.