Page Text
11/03/2019
I am writing to express my frustration and dissatisfaction with the process that is undertaken to develop plans for individuals in the NDS, and the false reasoning of the NDs that pwd [People With Disabilities] can and must be accountable and responsible, regardless of their individual circumstances, for costs that other people in the community would generally be responsible for.
I live in a rural area, and as such there are many aspects of life for me as a person with spinal cord injury and a quadriplegic, that are very different to people in the same position as me that live in towns/cities. I live on a farm with my partner who is also disabled somewhat. This farm is a haven to us and we seek to live a simple, peaceful life.
In my NDI plan, my first goal states:
- Ongoing To maintain current level of independence as I age, maintain and improve health and wellbeing in an accessible, safe, enabling home environment.
In order to maintain that independence, carers and allied health workers need to be able to get access to me and I need to be able to gain access to them. My entire plan is forfeit if this is not possible. My home environment is not safe and my health is stuffed without carers, allied health or community nurses being able to deliver my approved plan. So without such access to me, all is forfeit.
Other people around this area have to maintain access to their properties as well as I do. For many years a kind neighbour helped me to maintain this road, but he passed about 8 years ago. I have been trying to get help for it ever since then and it has been an ongoing stress and struggle. Unlike other people however I cannot physically or financially untake the maintenance of the road. Other people on properties in my area, are physically able and/or financially able to undertake this themselves. For example, if someone didn’t have the money to fix their own road, they may barter with a neighbour to do their road in return for working for the neighbour. I can’t do this. I can’t afford to get some else to do this for us.
We have no friends or family here to help and we have tried local council etc to find assistance, without success. Our local LAC is completely aware of our situation and has tried to support us to ‘get through’ to the planner who has done my plan, and further up the chain of the NDIS.
In my latest effort to get them to help, I wa supposed to be contacted by the NDIS Strategy Group or something like that, but no-one called me. I just received an email from the planner stating ‘the outcome’, which was of course NO. The planner that is responsible for my plan, and therefore my quality of life and has some kind of power to dictate how this next year will go for me in real day-to-day terms, has NEVER been here to my property and has only ever spoken to me once on the phone after I pushed for the contact.
How can someone who has never seen me, where I live, how I live and what my environment means to me, decide that they will simply resort to the ‘protocol’ of:
’The NDIS will not fund ongoing repairs and maintenance that are ordinarily present within a participants family home or property, or support remedial work that would ordinarily be the responsibility of the property owner. While I understand that the access road becoming inaccessible due to its ongoing maintenance requirements is a concern for both yourself and those visiting the property, it is considered your responsibility as the home owner to ensure that this access road is maintained and therefore the ongoing repair and maintenance costs are also your responsibility and not that of the NDIS to fund. ’
So as far as NDIS is concerned it’s just too bad for me. I just have to cop it sweet. Now, of course I do not expect the NDIS to pay for other everyday costs that are my responsibility. And yes, the road maintenance would normally be my responsibility if I were not disabled, but my position as property owner is NOT the same as the other property owners in my area. I cannot fund this myself, I cannot do this myself, and without good access to me all those people funded via NDIS cannot help me.
So, a planner develops a plan with wonderful core funding, and with other wonderful funding I’ve needed for a long time. But the key element I need is missing because of a protocol that is used to dismiss anything that might be too ‘gray’ to bother about. Too hard or maybe just too bad for me.
Planners, who after all do ‘the plan’ for individuals, should be at grassroots with the people they are planning for. Otherwise enable the LAC’s, who DO know the people at grassroots level, to have real input, influence and assessment ability with the people they see. My LAC has driven on my road, she knows where and who I am. My planner has no idea who or where I am. So more influence for LAC’s in the planning process so people aren’t left to struggle with a need they can’t meet that is not acknowledged or provided for in their plan.
The notion that pwd should always bear costs that others in the community would ‘normally’ bear is a policy that can marginalise, disadvantage and deprive people of ‘necessary and reasonable [in their own individual circumstance]’ assistance that does give them choice, control and independence.
There are obvious costs that should not be borne by the NDIS[everyday bills, plumbers etc], but if a cost is pivotal to an individual’s ability to participate in everyday life and if an individual cannot meet this cost or cannot literally take care of such a cost by physically doing it themselves, then surely that cost, in that individual’s circumstance, should be funded.
To sum up, the planning process and structure needs to be overhauled and LAC’s given greater influence in the whole process. LAC’s should be the frontline in allowing pwd to exercise maximum control and choice that will result in a plan that fits best with them where they are and importantly that addresses who they are in their environment. Linked to this is the need to urgently rethink the policy of denying people funding for services/assistance that is considered to be something that other people in the community would be responsible for. A blanket dismissal of a person’s request for assistance that conveniently gets dumped and filed as not possible under this policy from the NDIS, could mean denial or reduction of access to necessary and reasonable help for that individual that puts them in a position of vulnerability or jeopardy, and it is unfair and contradicts the core values that the NDIS is supposed to function under.
No machine-readable text was extracted from this page.