Submission 2830
I am writing this submission to raise my concerns with the proposed NDIS amendment bill in my capacity as a parent and carer to my 10 year old daughter who is currently receiving NDIS funding and my 5year old son who has been waiting for access to early intervention for over a year now despite meeting access requirements of developmental delay.
I am also a Registered Nurse working in individual Paediatric disability support through the NDIS. Meaning I have the perspective of both a provider and recipient. From both perspectives I am appalled.
I would first like to question why exactly the government felt it necessary to rush this through with such sweeping reforms and such limited details and evidence. It feels targeted with the knowledge that people with disabilities and carers are extremely time poor and already overwhelmed. Hoping that the public will let it slide without outrage because historically people with disabilities have been the target of mistreatment very successfully and this feels acceptable. This is absolutely not acceptable.
This is not the approach of a government who genuinely believe these changes to be in the best interests of all Australians.
Just to be clear, people with disabilities and those that care for them are in fact Australian’s and deserve to be treated with as much respect and dignity as any other person. This bill does not exhibit that belief at all.
This bill is incredibly disrespectful off the entire disability community including carers and providers. The repeated suggestions that there is wide scale fraud and rorting is both unfounded and offensive. The vast majority of people are accessing for the purpose for which it was designed. he government itself should be held accountable for not appropriately protecting the NDIS itself if there is fraud and rorting occuring. The threat of removing eligible participants and extending the eligibility criteria is cruel and appalling.
Above all else, the safety of the people it is intended to support has to be paramount. How can any sum of money justify the harm this Bill has already caused to vulnerable people.
I am concerned by the extent of damage done already by the discriminatory and inflammatory language used by both the media and the government itself. The harmful contributions to the misinformation around Autism in particular are ableist and offensive.
The suggestion that functional assessments should be given higher standing than diagnosis is also frankly offensive to the highly skilled healthcare professionals who undertake the rigorous and time consuming process.
If an individual has met criteria for any permenant disability they will never not need supports. That is the very nature of a permenant disability. I am forced to question whether those that crafted these changes have the comprehension of disability to make any such suggestions.
Submission 2830
This Bill has already caused harm to the disability community and if passed will directly contribute to preventable deaths. People with disabilities and their families should not be subject to the danger of having critical supports assessed by any sort of computer generated process. They should never have even had to contemplate such a concept.
Surely the robodebt inquest gave sufficient evidence as to the catastrophic consequences of taking humans out of human services. Vulnerable populations need additional safety measure not punitive algorithms.
As a healthcare professional I am appalled by several aspects of this bill. I would never be satisfied with a policy that had such a lack of clarity and evidence to allow it into my practise. I would expect a far higher standard of research prior to presenting a document with such long reaching implications.
As a healthcare professional I cannot comprehend how this document was deemed ready for public scrutiny, let alone to be presented to the senate.
As a parent and Carer I am exhausted, furious and terrified.
Terrified that this bill will pass and my sweet children along with thousands of others will suffer because of this disgusting piece of legislation.
We have only just begun to access support through NDIS for our daughter and the difference it has already made is immense.
The process of diagnosis is long and difficult, particularly for girls with AuDHD. By the time we had that diagnosis she was in severe autistic burnout with debilitating depression and anxiety.
My beautiful baby girl was suicidal and we had no support to help us. She was just 8 years old when she first told me she wanted to die.
When we finally had clarity through her diagnosis it would be another year of laborious advocacy before we were given NDIS approval.
I am beyond grateful that she is no longer in that state of mind. But the risk is always there.
Autistic people are eleven times more likely to die by suicide than the general population.
Read that again.
Eleven times more likely.
This is our reality. That statistic looms over our family. This is what individuals and families of autistic kids are striving against.
NDIS is a lifeline keeping her afloat and now you are threatening to take it away if she has a little moment of peace?
Submission 2830
Parents and carers of children with disabilities are swimming with everything we’ve got to keep our kids from drowning in a system not designed for them. A system that has and will continue to let them drown.
This is what NDIS has the power to change. NDIS is providing access to life saving supports.
I also have grave concerns around the impact of thriving kids and the lack of early childhood intervention available.
Our younger son is showing even more severe symptoms but is being rejected for early intervention. We were advised that he meets criteria and further NDIS assessments show he requires more support than 98% of his peers.
However, our LAC informed us that he is unlikely to be successful due to recent changes. While we wait for the paediatrician in october my son’s condition worsens and yet we cannot access critical early interventions at all.
We are forced to decide between critical early intervention therapies and paying our rent. No parent should be making such choices.
In contrast, the relief of being able to access therapeutic intervention for our daughter is immense. We are able to decide based on her need, not our budget. We are able to seek out practitioners that align with her specific struggles rather than being allocated randomly from a waitlist.
The contrast between our two children highlights the value of keeping autistic children within the scheme and the dangers should the current proposals move forward.
My hope is that the government will listen to the overwhelming number of concerns raised.
People with disabilities and their families deserve autonomy, respect and compassion.
Parents and carers are not ok. Please don’t let our children drown.