Family member of a person with disability
To Whom It May Concern,
1.1) At best it means they can focus on specific needs.
1.2) The drawbacks are much greater than the advantages. As we know with ourselves, a holistic approach is required so that significant impact can be made in each individual’s life and circumstances. Focusing on one or two goals may seem realistic but its significantly short of the “change of life” presentation the NDIS has been bullied through and into acceptance. After waiting for years for the supposed relief to be found in this new regime needy individuals are now being told they’ll have to make do with crumbs that may or may not make a real difference in their lives.
Further, if the funding isn’t there to correctly tackle issues of concern but are instead patched over, there’s no guarantee they’ll be there in the future and having been sold on the personal programme component of this endeavour, to now be told your choices are “one or two things” isn’t really a choice at all.
1.3) The current isn’t flawless but it is better than the one being pushed by the NDIS which will see funding to a myriad of excellent advocacy groups such as Action For People With Disability (ACTION) who have helped David for decades now. So to see it being undermined by a system that will be self-referential makes no sense at all as how is the system providing the advocates supposed to police to the organisation its being complained about? Independence from the mechanism that’s being advocated against is a necessity. Therefore we can value and support the various models of advocacy that have been contributing to the successful intercession of thousands by continuing to fund them; not scrapping them for a monolithic beast that will most likely be bureaucratic hell to navigate without the experience years worth of negotiating the disabilities field these organisations and individuals come with.
2.1) The truth is, I as an individual do not know the answers to these questions. What I do know however is that long standing groups such as ACTION have a wealth of experience and should be encouraged to continue in their services and not having their funding count. They’re used to working closely with friends and families who are in sync with the specific personal requirements of their loved ones and can help build the bridges throughout every community to do so. They do their work out of love and compassion which is the best way to reach across any culture, community and/or linguistic barrier not matter how isolated.
2.2) Again, I’m not the expert, but the experts should be listened to and not have their funding cut.
3.1) They are already in place which is why I’m writing to you. I’ve been provided information by ACTION and are seeking to stop systemic issues from occurring right now in not having independent advocacy removed from access; and having one or two goal focused outcomes when overarching lifestyle plans are required if they’re to make a difference.
3.2) Keep funding the ones that exist would be a good start. You can’t “help” them if you’re forcing them to fold due to them losing funding. In fact communication by decree seems to have been the tale thus far as the NDIS was simply lumped on everyone without consultation. So that very thing, consultation, would also be very helpful.
4.1) The problem is acknowledged even in the way the question is posed in finishing with “or are minimised”. There WILL be conflict of interest between these government run entities and unless there are strong, knowledgeable, independent advocacy services available individuals plus their families and friends can access, the people that are most vulnerable will be caught between them with little to no support to help extract them or represent their rights. The simple answer is, keep funding independent advocacy groups such as ACTION.
4.2) The only way to avoid gaps is to be able to identify them and then strongly represent them as only experts in the field can do.
4.3) The first is not to have a dictatorial system that tells you, we can look at “one or two” things and that’s it. Where are the rights of the individual there? Nor are individual rights being upheld if someone’s first meeting with the NDIA doesn’t produce the outcomes they require and they’re forced to endure hardship until the full NDIS plan is eventually made available. There needs to be independent bodies available that aren’t either the NDIS or the NDIA to appeal to and the processes for them to do so must be enshrined in the in their governing regulations.
5.1) Again, as the brother of a disabled man, the only answer is advocacy groups that understand the system, are on the cutting edge of legal changes and are moving within the system constantly. For me that’s been organisations like ACTION that have not only helped individually but also mobilised us collectively. They must remain as part of the solution.
5.2) Typically its communication, funds, knowledge base and bureaucratic awareness so that the right calls and letters can arrive in the appropriate language to drive results. I’m educated at the Graduate level but when it comes to the intricacies of the disabilities field I always rely on the assistance of advocacy groups such as ACTION to guide me and my brother through whatever is required.
5.3) Independent and sprung from the community that’s realised there’s a need and acted accordingly. While we appreciate everything the government is attempting to do, too often the view is too general in nature, in having to deal with thousands and thousands of people, which is why the smaller advocacy groups are invaluable in being able to focus in on the need of individuals in a way larger organisations cannot, yet by doing so quite often enacting positive change broadly as well. That is why I’ve mentioned ACTION so often in this submission as I feel, as do so many others, that their model of advocacy has been incredibly effective and to deny them funding is to undermine the human rights of so many that have and will continue to represent.