We have to stand up for the rights of our disability young or adult children or their rights will be non existent ...parents do not have to put up with what providers do or NDIS fails to do...we need to raise our voice for the vulnerable and raise it loud
....our recent protest at hyde park Sydney drew alot of attention...the covirt doesnt help for parents getting out there...but our protest signs on the need for justice andprotection and to be a voice of vulnerable were agreed with enthusiastically by the public I talked to and people are interested to know whats going on so it raised awareness and contacts this week. on Thursday 3rd December 2020 international disability day
Noted by Harris (Sept 2020 SMH) an independent review found that the NDIS system left vulnerable people open to harm and neglect.... surprise !surprise!
we cannot just leave it like this we must change this situation after their 22 billion dollars the federal govt gave the NDIS they have not looked after those with disabilities properly at all paying scant attention to their needs and all attention on the money...where is it?.maybe they spent it on watches...because they are certainly not watching over our vulnerable disability children!
A study by University of NSW showed that due to systemic problems around health and disability staff training and expertise across the country that poor practice contributed to a spate of premature deaths. The report noted Queensland where 53% of deaths of those with disabilities were considered potentially treatable or avoidable, in other words preventable. Half the people who died could have had that death prevented.....
I think of Merna Aprem who died here in NSW last year - that was a preventable death due to lack of supervision which needs to be investigated properly and prosecution of the organization needs to occur. Where is the justice? this is despicable...
Deaths that could have been prevented and yet it is treated as normal! not only 53% of deaths were preventable but the Providers should have been punished who allowed those deaths in care.
It was shown in this study by LUke Michael (Pro Bono February 2020) that staff were not even adhering to the plan they were given for mealtimes in regards to choking and other problems in working with disability persons and this was a major contributing factor in choking deaths. How awful and how stupid to not train staff properly and that staff would not even listen to the plans they were given.
Typically in response to this the Quality and Safeguards commission vowed to add an extra requirement in the practise standards and quality indicators to address mealtime supports. All their requirements mean nothing if they never penalise the organizations that do not adhere to their requirements anyway...they need to be penalised or punished an especially any worker who lets someone die should be banned or potentially a manslaughter charge. There is no justice here it is wrong to talk about it like its an everyday thing for someone to die in care! Normalizing their death when it should not be normal ever.
When my son was young 5 years old I was at a church once in the creche fixing him up and a man said to me how old do kids with that condition live...what do you mean I asked puzzled? What is there mortality he asked....I dont know I said suddenly shocked that he would ask such a thing...as far as I was concerned my son would live as long as any normal person... and I couldnt believe he could be so cold and callous as to ask such a thing about by little beautiful son...
now I see that many with disabilities do die younger but not from their condition rather through lack of proper care from care providers or proper medical help when they needed it from the medical services or the providers.... hurting and letting them die through neglect...its not natural causes!
we must change things...it was noted in the study that Inadequate health care and poor practice from service providers is causing people with disability to die 36 years earlier than the general Australian population.... they noted that service providers should provide those in their care with annual compehensive health assessments.
Something Ann Marie Smith obviously never got as she lay there dying of ill health and starvation this year....no one looked after her health...NDIS has seriously failed and Stuart Robert has not cared.
Shame on them and shame on him.
The council for Intellectual disability said the findings of the research by UNSW were shocking and advocate Jim Simpson told pro bono news that the report was a stark compilation of evidence on inadequate health care and disability support which caused people with disability to die far too early.
WE need to change these things and help each other to stand up for our disability young or old child or sibling...I was at a supermarket recently and a teen boy came up to talk to my son who was listening to his music, the boys mother said her son had autism and was bullied at school alot and he cared about other kids...James didnt say anything back to the friendly boy who said to him "James if anyone ever hurts you you come to me and I will crush them I will..." thanks I said my thoughts exactly... James looked at him and smiled and then went back to his music...It was so good to hear someone else want to stick up for my son... #disabilitylivesmatteroz
all the best
Anndrea x