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Fifty Shades
AAARAAA of Grey
A completely serious submission to the Senate Inquiry into the
National Disability Insurance Scheme legislation - Bolshy Divas
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She wrote; ‘Think about this.
There are a nation wide shortage of ‘interpreters’, the people who are very good at asking the right questions
|
and interpreting some complicated legalese. — ’
Some of the disability peaks have done a | as
reasonable job (with some notable exceptions), p
but their memberships are limited and city centric.
Some of them have members who are articulate and passionate about advocacy in their own right - and they will make their own submissions. But who - tell me, who? - has read the question about the proposal for a person with disability to have to request permission from the CEO of the NDIA to take a holiday, and then has sat down with a person with an intellectual disability to say ‘Hey, Tim? How often do you go on holiday? Do you stay in Australia? Would you like to go overseas, and how long for?’
Anastasia thought about her friend Tim, who has Down Syndrome. He would agree to any activity deemed fit and pleasurable by his service provider, and would probably need a great deal of support to answer this question. Because we people with disability are trained to agree, eagerly and without hesitation - to obey. We need support, and time to think about these rules which will impact upon out lives.
Our lives, our rules.
She wrote down the words
INVOLVE US - ASK US IN A WAY WE UNDERSTAND SS? _—-rrv
and underlined them three times.
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Personal Holidays
The Submissive shall not holiday for longer than six weeks and if they do so their Plan will probably be suspended.
Life Plans
The Dominant will approve a Life Plan and if they do not, the Submissive will not be permitted to live their Life. The Dominant shall own the Life Plan and permission must be sought from the Submissive if they wish to alter or adapt it (including in times of crisis or if they change mind about their Life Direction). The Submissive must share every aspect of their Life, even if it’s not relevant to the Funding. The Plan shall be owned by the Dominant and all ownership of information shall hereby be revoked by the Submissive.
Privacy
The Submissive hereby gives up all right to privacy to all of their information and allows the Dominant to disclose private and confidential information about their lives to any government department for unspecified purposes.
it would be funny, but it wasn’t. This was real life. Should people with disability be allowed to go on holiday, and should they have to ask permission? And what of ownership of plans? Why should the CEO have to ‘approve’ the plan? Who will be approving the CEO’s Plan? And what happens if something happens to the person with disability - something usual like a transition or a crisis? Would a new plan have to be put in place, and what would happen to that person in the meantime? How did they stay in hospital, or be homeless, or otherwise unsupported?
another passage for the Hard Limits. Nuff said.
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**if they are only supported by the aged care sector.
Who will decide how people are supported through an unwieldy Administrative Appeals Tribunal case, and who will be making the decisions about whether a person has a fair or unfair case? Will people with disability be represented on the Tribunal? Will there be a disability Ombudsman, or will there be something similar to the SSAT?
And if you’re no longer allowed to manage your funding if the NDIA thinks that would be too big a risk - who will decide, and based upon what measures?
And lastly - is there anything in the Bill that provides lifelong certainty? There needs to be an understanding that there is no model of disability care and support, wrote Anastasia, because there is no model for life. All we should be doing is putting a frame around the outside of a picture - a picture of a good life for people with disability and their families. And the Bill should be that frame.
How to finish? Anastasia picked up the Fifty Shades Trilogy, threw them violently (and with a sense of relief) across the room, then scrawled the last few words.
THE HARD ROLES
PEOPLE WITH DISABILITY MUST BE ACTIVELY INVOLVED
THE LEGISLATION MUST BE CONSISTENT WITH THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES
NOBODY SHOULD BE WORSE OFF ts aa
PEOPLE MUST HAVE THE RIGHT AND ABILITY TO ACCESS ADVOCACY —— PLANSAND INFORMATION MOST BE OWNED BY THE PERSONj
PEOPLE WITH DISABILITY MUST BE PLAYERS NOT PAWNS s™: THERE 1S NO MODEL (Soe hwy Dasa GwV
- finis**