Disabilities ignored by government in normal life and in pandemic must change....and exploitation by providers continues with no punishments...
I was jolted by the latest royal commission news of how disability kids and older are being treated in the pandemic - forgotten about,no pandemic plan by the government, left without carers...this should not be, there should have been a plan and extra care for families especially if gthe NDIS says it is there for them - Stuart Robert and his ndis need to get their act together...
I too felt a sense of panic when the first lockdown occurred in NSW for food, for carers who left abruptly who would normally take my son out...and programs that upped their rates by 300 percent. I worried about James that he would have nowhere to go for a program or respite and that I would not be able to cope...I worried about what would happen...you are already under incredible stress with a special needs child and a pandemic well that just adds more you could end up in the corner rocking yourself...I saw poor people in the world in places like India nursing their cerebral palsy child in a hut living on nothing and I felt bad for them... life is tough anyway for a parent of a special needs child even worse for the poor and poverty stricken...
now I read in ABC news article (ursula malone) that the Australian government's coronavirus plan did not include disabilities and in fact I did notice that Job Seeker and Job keeper were on suddenly $1500 a fortnight while the carer allowance for me and others was never lifted and much less a fortnight...and yet we are caring 24/7 for someone with high demanding needs sending our stress rates through the roof...
and worker gets $67 plus an hour for doing one on one with our child...how unfair is that? In other words they are better off than a disabilities persons own family looking after him!
It is beyond the pale and the government needs to help the families looking after their disability people more much more...and stop just talking about it...
Its true the rates went up for NDIS and they do every year for services rendered by providers theymake more and more money. Yet the carers, parents of these disability children's money does not go up.
In many cases I have had to tell the managers in different organizations to stop taking money that was not in the service agreement...and they tell lies back, that they didnt take the money and I know that they know they did. So I have had to fight that as well as reporting it to the fraud department.
Go figure...working with all that money makes the providers even more greedy it is kind of sickening when we the carer parent is struggling to make ends meet....I also found that the providers certain unscrupulous ones in particular tripled the rates of fees for respite stays attributing it to the covirt crisis but making sure they made money out of it....
I feel like we are in a horror Charles Dickens story with the providers singing "got to pick a pocket or two...or three or four..." and we are the poor kid in the street asking for more...
the poor penniless families who look after their disability child and cannot work and make money due to the work load of a disability person are worse off than the providers raking in the benefits.
We did not get a raise at all in our carers money.
The premiers should not be getting pay rises either.
They should be ashamed of themselves the way they have browbeaten everyone over the pandemic and then neglected to help those who most needed it. Yes Ann Marie Smith of Adelaide died in the middle of all this because no one at NDIS actually gives a damn. She didnt get fed. Others have also died. The man with cancer who was dying and no one helped him so he locked his boys in the bedroom so they wouldnt run away what else could he do? Its like a form of discrimination against the have nots by the haves - ndis workers especially in the organization living on high incomes. A woman's brother died with all his NDIS services cut off from him because he didnt do the review...didnt know how probably or couldnt because of his mental inability to and no one to help .
The ABC news report says that disabilities have been forgotten in thepandemic
one mother saying she felt like she was in a sci-fi movie when all the carers stopped turning up and she had four children with disabilities - I felt so sorry for her...she said it is like being locked in by running your whole life around a disability person and I know what she means. Cars are speeding on the main highways near my house - normal people with normal lives are stressed now not even living with the stress of a special needs child. WE need to help each other.
It is not as the ABC news said "we are all in this together" because those with a disability child are not getting what the rest are getting in help, money and services...they are disaproportionately disadvantaged...you dont say
It can be a prison trapped feeling for those of us carers who have highly demanding needy children much as we love them, we need time out or we will fall apart and it is no exaggeration there is only so much humanly a person can do. I have tried to emphasize this to those ndis office people that call up or do the interviews...they dont get it because they know nothing about disabilities - why are they in those jobs? Its just office work to them as they top up their middle class lifestyle...
the federal government needs to help properly those who care for their disability children, and NDIS needs to stop just being about the money and actually step up to meet people's needs. Provide like they say they will. It is not enough to fill out forms and make phone calls, actions that help people are needed, and human involvement is needed.
I watched a mother in tears on a recent live streamed video pleading for help for her child who needs a wheel chair among other things she appealed to Stuart Robert for help she was beside herself with stress and need ...Stuart Robert needs to step down if he will not make the effort to meet the needs of those people with disability children he claims to care about - yet we know from the Crikey.com articles by Amber Shultz that the NDIA office people are told to favour the organization providers over the disability person when there is a complaint...and that is just despicable...
Help and support of the families of disability children young or old needs to happen from the NDIS monetarily and with decent providers Stuart Robert needs to help them
instead of filling up the coffers of his income and the incomes of the ndis administration workers and the providers who exploit our children with disabilities as much as they can.
The ndis quality commission rang me recently to see how James was - why I said? that was a year ago and you did nothing about my son's injury at the hands of a respite worker, unprovable without cameras -
It has been in the media (James story by Journalist at Crikey.com) she said we put in protocols to ensure these things never happen in future - really? I laughed at the ludicrousness of it - well its not working I said those protocols you put in years ago and the providers and workers did not keep them and 10,000 incidents are being reported to the NDIS every month but you do not punish or penalize anyone - they get away with it so there is no deterrence - you need to tell Stuart Robert we need cameras in respite houses so that our children are protected from workers who would harm them and we can then take it to the police with evidence... I told her... she said wanted to look at the case again...I said ok I cannot prove that worker hurt James and the organization only moved her because I demanded it and they wanted James's money but you should have at the least punished them for lack of duty of care, and negligence if not for assault and the worker for lying saying that she saw nothing.and a few days later saying that she saw something.
Thats why we need cameras and new laws to protect these vulnerable ones like my son... because the lies are endless by providers covering their tracks getting away with everything...and even the NDIS representatives and politicians as we know are not as tranparent as they claim if at all.
all the best
Anndrea Wheatley x