Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100 Parliament House Canberra ACT 2600
Via email: ndis.joint@aph.gov.au
Dear Committee Members,
Re: General Issues - Annual Report No. 2 of the 47th Parliament
This submission is to outline my personal experiences and issues with the NDIS that I have witnessed as somebody who works in the disability industry as a support worker.
I have been a support worker since July 2021. I have supported many individuals all of whom are reliant on the NDIS and NDIA systems. I have worked with people on the autism spectrum, people with angelman syndrome, acquired brain injuries, tuberous sclerosis and many more. I predominantly work with people who are seen to have “challenging behavioural issues”, and these people already face unfair scrutiny in many facets of their lives outside of the care they receive.
I am unable to speak on behalf of all participants, but it is my belief that there are countless shortcomings in the perception and the treatment of developmental disabilities by the NDIS. I have heard many testimonies from fellow support workers and families of the people I support about how hard it is to secure the proper funding they need and how much time and effort it takes to hear from the NDIS. These shortcomings include amount of funding provided, efficiency in responding to reviews and requests, and the way decisions are made regarding document-based representations of real, vulnerable people.
At the current industry award rate of $35/hour, 24/7 support for one individual is $300,000 annually, bare minimum not including therapy, room and board, or costs of living. I’ve been told that it’ll take around $800,000 annually to receive proper 1-to-1 support. I know that every single one of the people I have supported doesn’t receive anywhere near this kind of funding. 1-on-1 support will always be unrealistic, but with the amount of funding these people receive, they don’t have any other choice but to live in a group home with 4-5 other people. Their quality of life and the quality of support we can provide is deeply diminished by this fact.
I understand that there is a lot of money that is needed to support people with disabilities in our community and that some of these shortcomings are inevitable, however I believe to cut funding any further can be dangerous for these people.
That said, at this same award rate, full-time work in this industry only takes home $70,000 annually (7% above the median salary in Australia) – with everything going on in Australia right now, this is not a lot. To speak candidly, I am a casual worker working to my full mental capacity and I earned around $75,000 over this last financial year – over 60% of that has gone to costs of living.
This can be a very physically and mentally taxing job and any cuts to funding provided by the NDIS will also reflect onto support workers, which will only worsen turnover rate and quality of care provided.
Improvements Needed in NDIA Response Efficiency
I believe there needs to be improvement in the efficiency in which the NDIS responds to reviews and requests – support levels can change rapidly and drastically for people with disabilities.
Epilepsy is one example of many issues that people with disabilities face. I have seen this be catastrophic for people I support. Over the last 2 years I have watched one individual’s condition slowly deteriorate due side effects of vital epilepsy medication as well as constant uncontrolled falls (which have gone from fortnightly to nearly daily now) – this has resulted in an extreme change in support needs and yet nothing has changed with the funding he receives. Another individual who I no longer support went through a period of months hospitalised due to epilepsy and is now wheelchair-bound.
It’s frankly dangerous to have to wait 9 months to hear back from the NDIS about a plan review and then to most likely have a request for additional funding be refused anyway.
People are disabled by the society around them, and it is our responsibility as a country to assist them to live an average life.
I believe the people I support deserve better.