I was 38 yo and close to ending my life when by pure chance I came across something online talking about Autism and things that some people may not know they are due to not understanding how one is deemed to meet the diagnosis
I felt identification with this and learned it did seem plausible I might be , so I booked in for a diagnosis that took a month of several visits and it was confirmed.
So it was an interesting feeling to discover there might be reasons for the challenges and life I was leading that was self imposed exile from society at home nearly every day of the week .
The relief then turned to surprise when it became apparently clear, any services or support networks for Autism did not basically exist for people born pre 1990 , and the services that do exist for most autistics was strictly children and adolescents
There appeared to be no place for people with Autism over the age of 30 in Australia
Thankfully I started to see the person who diagnosed me for mental health treatment which kept me from ending my life
The same year coincidentally the ndis was rolled out to my area and I was accepted as a participant
I was very happy with the process and the creation of my plan and the choice and control it gave that supports I needed to live independently with support from NDIS was becoming reality ,
The plan saved my life because it took away the disability tax my life was forced to endure on a daily basis if I wanted to be part of society
And with self-management the barriers and obstacles that meant limited supports existed in the mainstream especially amongst registered providers, With choice and control to engage non-registered providers I was able to widen the scope and search for the help I needed to live independently and work towards my goals
I was able to leave the house , I was able to participate in every day life and for me this was life changing stuff as I expected to no longer be alive by this time .
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The fundamental and only possible way the NDIS worked for me was due to the flexibility of self- mangement and the ability to cast a wide net on the supports that directly related to my needs and my disability
It Saved my life but I fear the proposed bill and changes by Bill Shorten threaten to undo the progress I have made the last 5 years in my life while being on the NDIS , It is scary to think that there appears to be no consideration of people like me on the NDIS and also generally a lack of common sense and practicality of some of the changes
My Two main concerns to myself in the future relate to changes to the Reasonable and Necessary criteria , it seems the goal is to marginalise and demonise supports for people with Autism require and seemingly preferencing the NDIS to become a program that only supports people with profound physical disability .
For the NDIS to become an entity that puts value on a persons Disability with such a backwards and prejudicial viewpoint is frankly pretty disgusting . All People with Disabilities face their own barriers and challenges and to suddenly rank the very nature of your disability as being less or more in need to get support seems blatantly discriminatory in its nature .
If any Participant knows there is a large amount of Medical Proof that is required to justify what is being supported and funding and the notion the funding has to relate to the persons disability
It is unclear why suddenly Participants on he NDIS are set the reap the wraith of restrictions due to the NDIA own inability or lack of legislative powers to enforce incorrect use of NDIS funds.
It seems cowardly to take the easier option to blanket rollback the rules in this area when there was clear evidence the Safeguards Commission is one of the biggest failures of the NDIS
An example of this , I was required to engage a REGISTERED NDIS GARDENER instead of a normal non registered Gardner
Firstly on cost
My non-registered Gardner was charging me on avg $150 a visit
The NDIS Registered charged $450 for the same amount of time onsite
Then the NDIS gardner proceeded to cause over $500 damage to my property
Aware of the Safeguards Commission I lodged a complaint against the provider,
It took 3 months to hear from them and then it took another 5 months for them to respond
There is nothing they can do and I would need to take my own small claims court action against the provider
I was shocked that a NDIS reg provider would be able to be so protected by the NDIS for this behaviour and the third party legal advice seemed absurd as it was a NDIS registered provider
If I was doing a review I would of disbanded the safeguards commission and replace it with a body that has enforcement powers
This brings me to my main concern with the new proposals, mandatory registration for providers
This is the largest red herring bill shorten has run with in the media and PR spin around the country
The notion this idea is protects participants and stops abuse is absurd and frankly to biggest lie being spun to the media and perhaps those within Parliament who trust the Minister has the backing of the wider community
It Seems the only people who benefit from this change, is large Disability orgs, who would be allowed to monopolise their positions in the disability market, increase profits and earnings and milk participants at maximum allow price guide rates
This Mostly impacts self-management participants who often because they are able to handle their plans and affairs in this way , can engage at market rates and neg better pricing under the NDIS price guides.
If the Minister was being honest about protecting participants , he would revamp the safeguards commission first before any other changes or bills , and in terms of mandatory provider registration ,it only be imposed on those that due to risk and safety are already agency managed . it would be my expectation and assumption these people are being monitored and kept from harm or risk by the agency and this means of course it would be relevant to tighten criteria of those people and supports who assist those participants
What does not make any sense is to take away choice and control from Self-Managed Participants
For a myriad of reasons
Self Management itself requires the participant to demonstrate they or a nominee meets the criteria of being at low risk , from factors such as exploitation or vulnerabilities .
So with that in mind alone how can it be argue the Minister is protecting these people who do not appear to be at any risk of abuse or harm and in fact fully capable of advocating for themselves and engaging the supports they seem fit as well as neg at market rates when using non-registered providers.
It is common sense and makes me believe the Minister is not being honest about the intentions behind across the board mandatory registrations
This is going to destroy participants who have had working plans for years , and put them at risk of harm either indirectly or directly . when until now they
Have Never been abused
Have Never felt or been Subject to Exploitation
The Agency even under existing laws can move someone at risk to agency managed and thus if the registered providers they then engaged with had stricter audits and scrutiny from the agency then what exactly is the need or point of imposing the same thing on self-managed participants who don’t eed the agency wasting time and money protecting them from risks that do not exist to the same levels as a person who cannot self-manage
I encourage and hope the reader of this personal story will consider my ideas
I Would remove mandatory registration of providers for those using self-management and that they continue to engage providers under the same parameters that exist today
It is already a change within NDIA that Scrutiny of invoices has changed in recent time so the ability to review and check on self-management has never been easier for that to occur and mitigates risk on that front
Leave the rules for Reasonable and Necessary as they are If they are further defined, then the govt is assuming every person with a disability has the same supports and there is no point of difference which would be a very ableist way of thinking of someone with a disability
This measure could effectively render some people with NDIS plans that are not usable or fit for purpose
A review of recent AAT cases shows that it is still incumbent on the Participant to provide substantial evidence the supports needed relate to the disability and represent value for money
It is lost on me how the Govt saves the Tax Payer money when every participant would be subject to providers charging maximum agreed price guide rates as opposed to the market rates and below many Participants can negotiate themselves .
I hope people that hear stories or investigate the disinformation from the Ministers Words when out on the Media Trail consider the lived experience Disability community, which has been hijacked by self interest orgs who do not reflect or represent the views of the majority of the disability community and appear to have sold out the majority of the community out of survival and self interest
I will end by saying , to this day for Middle Aged ASD people , there is still barriers and lack of experienced supports to assist which limits the accessibility to those supports, without being able to engage non-registered providers this community is doomed to continue to live with a life expectancy 20 years below the national average , shockingly a figure comparable to first nations peoples life expectancy .
This is how serious the proposed changes could be to the Autism Community of Older Australians who do not have early interventions or supportive home networks to fill the gaps and supports should the NDIS abandon High Needs Autistic Adults over 30
Regards
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