Submission 1718

Submission on the NDIS Amendment Bill

Name:

I am a: ☐ Disabled person I ☐ Family member / supporter ☐ Clinician ☐ Other: ___________________

Short summary

I strongly oppose this bill. It is dangerous, ableist and cruel. It is NOT the participants who cause waste of taxpayer money, it is the PROVIDERS who abuse the system. This bill completely misses the point of wanting to save money by targeting participants.

My lived experience

I am living with primary progressive multiple sclerosis (MS), an aggressive form of MS. I have been a NDIS participant since 2018 – the year I was diagnosed. As my disease worsens, my disability increases and my needs change.

I am sharing my experience as a participant. Up until now, when it came to my plan and my support, the NDIS has been reasonable, considerate even when deciding on my plan. It has always felt like I had the ‘right’ kind of disability for the scheme. The evidence of my disability is impossible to deny, even for the most narrowminded and ableist of minds. The evidence and research the medical community has produced and is still producing on MS is large, devastating and impossible to ignore.

My experience as a participant thus far has been largely positive when it comes to direct dealings with the scheme. My main challenge has always been finding adequate support workers. I require help with daily household chores such as cleaning, washing clothes, tidying up, meal and lunchbox prep (for my kids) and the like. I also require help to access the community.

I have been lucky to have found wonderful support workers. However, I cannot stress enough that it was luck and only luck that made this possible which is concerning. Disability support work is a largely untrained workforce. People only need a police check and working with vulnerable people card and they are good to go. An overwhelming number of support workers do not receive or seek training in disability support. There are no guidelines or governmental body that ensures

Submission 1718

support workers behave ethically and morally appropriate which leaves the door wide open to abuse and exploitation.

In my life, I only experienced ‘light’ misconduct. I had support workers come into my house and impose their rules on me and my children. They disrespected my house (which is supposed to be my safe place) by re-arranging my furniture and kitchen in a way that suited them but not me and therefore making my own home unsafe for myself as a result. They gave unsolicited parenting advice and judged decisions I made. Such microaggressions are difficult to deal with, especially when one considers that there is a power imbalance to start with.

I am the one needing help so I am in the weaker position already. I depend on the support worker’s labour to live my life. This is a challenging situation for someone who used to be fiercely independent. It is humiliating to then be treated with such disrespect and contempt from the people who claim to care for me and have my best interest at heart. Ableism is so entrenched and normalised that disabled people are no longer considered people with rights or abilities to make decisions for themselves. One might argue that being judged and disrespected is no big deal – it happens to everybody. But unlike ‘everybody’, this happens to me in my own home that people waltz in and the misconduct is hidden away from the world. Unlike someone working in a corporate work environment, I can’t go to an HR department for support. There is no supervising body that ensures a code of conduct is upheld at all times. Once more, it is only by luck and not thanks to strong laws and policies that I haven’t suffered more severe abuse. Not everyone is that lucky. People have died due to these huge loopholes that no one bothers to closed – it’s only disabled people that suffer, right? No biggie, apparently.

The lack of training, education and awareness does present actual safety concerns for me. As my disability worsens, I am becoming a fall risk. A large number of support workers do NOT have any fall prevention training of any kind. There is no requirement or encouragement at all for them to acquire training either. In my case, this has meant workers trying to lift me up and dragging me over a door step or having to let me lie on the floor because they didn’t know how to help. Presently, I have to call an ambulance so the paramedics can help me up. This distresses me greatly that I have to rely on this wonderful but hugely overworked (and underpaid) service. This could be avoided if there were laws in place requiring support workers to have a proper education, regular training and supervision. Again, it is luck and luck only that has ensured I haven’t been gravely injured yet. But – my luck will run out one day and then the public health system will have to deal with the outcome that probably could have been avoided.

Submission 1718

My view of this Bill

This bill is dangerous, ableist and cruel. I oppose it strongly because it misses the point completely. It is correct that there is a concerning amount of misuse within the scheme. However, the main offenders are PROVIDERS and not participants. The NDIS has managed to tighten some rules but often AFTER something devastating happened, like the death of Ms Ann-Marie Smith in Adelaide.

Ms Smith lived with cerebral palsy and was tied to a chair where she eventually died. Her death could have been prevented if the NDIS had cared to put proper laws in place that dictate appropriate training and education for support workers. Ms Smith’s case also highlighted what kind of unethical and unprofessional service providers exist, right under the nose of the NDIS and its policy makers.

In my own experience as a participant, I had service providers try to sell me backyard equipment, suggesting I use my funding for it. The same provider also sent someone every two weeks to mow my lawn in winter when it typically doesn’t grow for months due to the persistent cold weather. It did nothing for me other than lowering available funds quickly and unnecessarily.

The NDIS would do well to examine and check providers who work with participants living with intellectual disability. At least in Canberra, there seems to be a pattern of questionable providers who seem to target those they perceive as easy targets because they live with an intellectual disability. It is concerning that providers can exist who empty a participant’s funds, leaving them without crucial support, yet the providers were able to purchase new cars and a beach house! This example does not exist in isolation.

Disability support (much like aged care) attracts lovely and caring people but they are being overshadowed by providers and workers who perceive the NDIS and its participants as an easy way to make a quick buck. This bill will do NOTHING to ensure participants will be protected from such questionable characters, even though such protection would not only benefit participants but would also save the government money. If the government cared to actually listen to disabled people, we could easily advise where and how money can be saved. This bill most certainly is NOT the way to go.