Every Australian Counts or Do They.

Please Support us on April 30th 2012

 While my fears and distrust still continues over whether a fair system of funding the Disability Sector can be found at least the NDIS brings hope. Despite having Cerebral Palsy; uncontrollable seizures and multiple health related problems, meeting my individual support needs has never been funded by directly the state government through disability services.  After more than 10 years I am still waiting for my support service, despite a category 1 rating, which I no long have as I’m too high functioning, I continue to wait for direct assistance.  How ‘disable’ will I need be under NDIS?  Under this ‘fairer system’ will I quality?

Or will it simply mean I have no access to other services under HACC. Being born with a disability they tell me will automatic mean I can access National Disability Insurance Scheme.

My hope for the National Disability Scheme is eligibility and thus service delivery is based on meeting my needs.  It focus is on what I can’t do without support.  So much support services are reflective.  I am tried of the one size fits all band-aid solutions.  I get help with things I know I can do, but not things I can’t do.  Under the current system I see so much money which could be better spent to support people with disabilities and the there families if funding was directed towards meeting actual needs rather than perceive needs.

I hope long after NDIS is established people with disabilities and their respective support systems continued to be consulted about service delivery and reforms. My name is Debbie Chilton and this is not only my story but the story of thousands of other Australians.  Please lend you support and make NDIS a reality.

An inside look!

I wonder if you could imagine what it is like to have no. of different people in your home each week to assist you with basic living tasks. Last week I six different works and friends who assisted me with my goal of living independently, I must admit getting to known three new support workers made the week more difficult and there week three days where I hardly had the energy to talk, yet alone explain to a stranger how I wanted things done.

I have made an effort just to standard back and observe workers and people over the last two weeks, have very little energy helped.  I never noticed how much we like to put our two cents worth in. I the same when a friend is sick drink lots of water take pandol , have you tired . . . I know my friends know what to do when they have a cold or the flu.  But I say it anyway. . .

So how do expect my workers to do otherwise?  I can’t! I need to learn to be gracious and take everything on board. I am thankful that they are caring people and say ‘thanks’. I hear what you’re saying but it doesn’t seem to fit with my experience.  Just as they don’t justify their opinions, I need to learn I don’t need to justify my response.  I should feel the need to agree just to keep the peace, especially in my own home.

Thoughts and opinions are one thing touch, moving or telling me where to put things is another.  So in I allow this imagine how many things could find move home in week.  At the end of a week no one can fine anything and that uses up precious time workers can be doing things not to mention my energy when I here on my own.

I been wondering where all my cloths have disappeared to.  Being in bed all week I wear my pj’s  It took ten days to discover, all my t-shirts are in my wardrobe, I’d convince myself I’d must of given them away.  Other things had moved too. Only one thing did the worker ask to move and that’s another of what happen when I said ‘no’ . . .     

Understanding my workers are trying to be helpful doesn’t seem to ease my frustration of constantly asking things not be moved or having to justify where I put things or what I buy for my own home. There are times when I feel battled fatigued. Days when I don’t want my books picked up or my craft put away, I struggle to explain why I want to be left alone and for one day just not to argue, defend or explain my choices.

Just for one day I wonder how others would feel letting others into their homes for help and defend or even change where they put things. Surely after one day they would understand a little . . .