things I wish I knew about getting my NDIS package

Disclaimer – That these are my own lived experiences and understanding from the research that  I do around the NDIS and health-related topics please be aware that it is informational only and not to be used as a substitute for professional advice or working with a Planner, Disability Advocacy service or talking to your Medical and Allied Health team.   

This is an interesting post to write but the NDIS is the National disability insurance scheme and it is a program to improve the lives of disabled people in Australia. However, there are a lot of things that I wasn't aware of in the program that I now wish I was aware of at the time and how to mitigate these risks. 

The first one is that Agencies are business and will treat you like a business, some a more person-centred than others but they are a business and will treat you like a number, despite advising to be a person-centred organization, and this is where I have grown to navigate the NDIS, so being able to navigate the NDIS well is another thing, so being able to have chosen and control over who you have and them being able to provide support's so you can have a regular life is another thing because people do get sick and sometimes shifts get cancelled, I get that as well but this is the benefit of having an agency as well.   But it's also the danger of an agency because there will be a lot of people they are supporting and this is something that we need to be aware of those who have higher needs will be put first in the agency so you need to be able to self-advocate. 

the second one is to learn the jargon and the NDIS seems to love jargon, it is something that we see as an issue and it changes so rapidly as well that this jargon is something that needs to be stopped, so you are quite within your rights to ask for things to be explained to you and if you don't understand something you need to be able to clarify what is wrong and this is another thing you should be able to speak up without feeling pressured into staying with the organization or being labeled as a trouble maker. 

 You might be better with an independent support worker and keeping friends and support workers separate as if a support worker gets too familiar it might not work well for everyone.  

That a support worker's level of training will differ from agency to agency and what is offered will be different,  or they will be undertrained and learning on the job as well.   

You will have to fight for what you need and not be pressured into services you don't need.  Or you might be offered things that you don't have the funding for and this can set people up for disappointment. this is interesting in that people are being screwed over by the system and that you need to constantly advocate for your own needs sometimes this is family that you need to talk to as well.   

This is a good thing in seeing what a person needs to do, and then we see that getting a package is the start, not the end of the journey as even getting on the program is a massive undertaking and this is where you need to know who to go to for what and how it is something that we need to be aware of.  As well as having what people promised you is a good thing. 

Having a support coordinator that is not associated with a support worker agency is also another thing that you need to be aware of as well. What they will promise and what they will deliver are two very different things and this is something that I have discovered by hard knocks that they will promise the world and when funding comes back and they can't deliver it is a blow to them but they have the client so that is a thing we need to be aware of as well.