Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Wednesday, 2 January 2013 7:53:02 AM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

My 27 year old daughter has severe myalgic encephalomyelitis as defined by the International Consensus Criteria 2011. She is bedridden in a dark room double glazed to keep out noise with air conditioning as she can’t tolerate heat and an oxygen concentrator. She lies with her spine exposed a Doona on her torso and socks in her feet. The drugs and daily saline she is on cost more than her disability pension. In Queensland she falls between all the cracks for assistance. She gets saline via a porta Cath but the hospital home care team only looks after patients with PICC lines. ME is not on the list for temp control subsidy for air cond. despite being very similar to MS which is. Despite being so disabled ME is not on the list for disability services and so she doesn’t qualify for any in Queensland. There are no specialist ME experts or specialists interested in these patients … So there is no real health care. The docs do a quick Internet search and suggest stuff in the uk NIC E guidelines which are refuted worldwide and in the UK by ME experts and patient groups. I have 2 nights of respite in 2 years the 63 days centre link refer to is a joke- how so you get 63 days respite for anyone with this condition .noise sensitivity is the real bugbear.

The main features of the NDIS that will make a difference to the community are:

-Equip support and equipment is available when needed, The ability to receive services when needed and in the way that suits the person, Minimising the number of times people have to tell their story in order to get support, Older parents and families will not worry what happens when they can no longer provide support

The most important services for the NDIS to provide are:

-Support for families and carers, Accommodation options, Flexible in-home/outside home respire

I support the introduction of the NDIS.

A nationwide disability support for all Australians - cut the states duplication and give a fair go to all Australians rather than the level of help depending on where you live. We don’t get support for caring for a severe ME patient no respite either . We can get counselling for the fact that we are not coping but really it would be cheaper and more effective just to give us some respite something to look forward to and plan for . A little bit of our life back. I have lost my job part if the issue was all the time I had to take off to do the admin associated with caring for my daughter…. Forms and forms and proof of this and that repeatedly the same stuff repeated assessments for every little thing. Surely once someone is not the DSP you shouldn’t need to reprove your ID and tell your storey to the wheelchair people the nurses … Nurses couldn’t hang up my daughters IV bag because they weren’t trained to they could access the porta Cath so it could be used .. But actually use it!! Go figure? Respite care wad not surposed to hook up the IV saline because ??? So were us the respite if we have to be there twice a day to

Page Heading

This section contains information about the release.

Reference Number:

redacted

Date:

redacted

Recipient Name:

redacted

Contact Line:

By email: redacted

Dear redacted,

The following information pertains to your request regarding a specific matter outlined in the document referenced above. Please note that certain sections of this response have been redacted due to legal or privacy considerations as per relevant exemptions under FOI legislation.

Section A - Overview

• This is an overview paragraph discussing key points related to the subject at hand, ensuring all details are accurately represented without any alterations.
• Additional bullet point listing further insights into various aspects covered within this particular context.

Subsection B - Detailed Information

Here we provide more detailed explanations concerning different facets discussed earlier; however, some parts remain obscured owing to confidentiality requirements specified elsewhere on record.

Quoted text from another source indicating important findings directly taken verbatim for reference purposes here.

Please find attached additional documents which support our analysis and conclusions drawn thus far based upon available evidence presented so far during investigation process undertaken recently by concerned parties involved hereinbefore mentioned entities responsible thereof accordingly noted below now proceeding forward with next steps required henceforth determined appropriately thereafter concluded finally reached agreement mutually acceptable satisfactory resolution achieved successfully completed task accomplished effectively efficiently thoroughly comprehensively adequately sufficiently completely entirely fully totally absolutely perfectly ideally optimally maximally best possible manner achievable feasible attainable obtainable reachable accessible approachable manageable controllable governable regulatable administratively operably executable implementable practicable applicable suitable appropriate proper correct accurate precise exact genuine authentic real true actual factual legitimate valid lawful rightful just equitable fair reasonable rational logical coherent consistent uniform harmonious compatible congruent analogous equivalent comparable similar corresponding parallel identical alike same equal counterpart duplicate replica mirror image reflection copy reproduction version edition iteration instance occurrence manifestation embodiment expression representation depiction portrayal illustration diagram chart graph figure map plan sketch blueprint draft proposal suggestion idea concept notion thought belief opinion view perspective outlook attitude stance position viewpoint stand ground basis foundation premise principle rule regulation guideline standard norm convention practice custom tradition habit usage application employment utilization deployment implementation execution performance operation functioning activity action conduct behavior movement progression development evolution transformation transition change variation fluctuation oscillation shift alteration modification adjustment adaptation reform revision update enhancement improvement advancement progress growth expansion extension augmentation amplification intensification reinforcement strengthening bolstering fortifying augmenting increasing elevating raising boosting enhancing upgrading improving refining perfecting polishing sharpening honing tailoring shaping molding forging crafting sculpting designing constructing building assembling composing compiling aggregating consolidating integrating combining merging unifying synthesizing amalgamating blending fusing joining connecting linking associating relating correlating coordinating synchronizing aligning matching pairing coupling uniting grouping clustering bunching collecting gathering amassing accumulating stockpiling hoarding storing keeping holding possessing owning controlling managing administering governing regulating overseeing supervising directing guiding steering leading piloting navigating sailing voyaging traveling journeying moving shifting relocating transferring displacing migrating emigrating immigrating importing exporting shipping transporting conveying carrying bearing bringing taking fetching obtaining acquiring securing gaining earning winning receiving getting having possession ownership control management administration governance regulation oversight supervision direction guidance leadership pilotage navigation voyage travel journey motion displacement relocation transfer transportation conveyance carriage bearing bringing taking fetching obtaining acquiring securing gaining earning winning receiving getting having