Joint Standing Committee on the National Disability Insurance Scheme
Phone: (02) 6277 3083 Fax: (02) 6277 5829 ndis.joint@aph.gov.au
29th January 2024
To The Joint Standing Committee on the National Disability Insurance Scheme,
Re: The Inquiry “NDISparticipantexperienceinrural,regionalandremoteAustralia”
Thank you for the opportunity to make a submission to the Joint Standing Committee with respect to the current inquiry into the experience of rural and regional NDIS participants. rheumatic diseases. I hope that the perspectives and stories of all those who dedicate the time and effort to making a submission highlight the challenges of accessing participant-centred services, and trigger action to bring equity to non-metropolitan people living with disability.
My story: I have been a participant of the NDIS for a number of years, initially accessing the scheme when residing in Melbourne during my tertiary education. For the past 5 years, I have been a rural/regional resident, and have broad experience of a variety of services in several towns across the state of Victoria. In the years since gaining access to the scheme, I’ve had close to a dozen Local Area Coordinators (LAC). This has largely not been my choice and on most occasions, I haven’t been notified of the change. Continuity of care and support is completely undermined by this revolving door of staff overseeing NDIS planning, resource allocation and connection with services/providers. As someone living with disability who is also a medical professional, I am fortunate to be able to advocate for myself. Despite this, attaching the word ‘NDIS’ to a service request or communication with a potential provider seems to indicate that I’m open for manipulation. I’ve experienced countless providers that take advantage of my vulnerability and need for their assistance, offering poor quality and inconsistent work for exorbitant prices, often with minimal and/or inadequate communication, spanning support providers and individual support workers to tradespeople to cleaners and maintenance providers (and beyond). In one instance, a tradesperson tried to rort $10,000 of my personal finances for a home modification after fixed quotes had previously been submitted and approved. They refused to share information and deliberately provided misinformation, and this situation was not only enabled by but driven by both the LAC and occupational therapist. I attempted to report the aforementioned provider who attempted to rort my personal funds, providing email evidence etcetera, and received an email months later to advise that the report was dismissed. What’s the point of advocating for myself, or speaking up to protect someone else from unfair conduct? Why bother trying to keep providers accountable?
High-quality support workers are few and far between, especially for participants who engage in paid employment and therefore need support around work hours. Without support to get ready and with transport, I can’t participate in the workforce as I am now. In my experience, support workers charge high rates and punish participants who may need flexibility with shifts, even though they frequently cancel or don’t turn up. This leaves participants suddenly without support and the workers face no consequences. Additionally, many have little to no training or qualification in any form of healthcare or disability care, as reflected in subtle ableist language and behaviour observed on a very regular
basis. Most significant is workers’ inability to take a participant-centred approach, instead inserting their views and opinions into how things should be done. This is incredibly condescending and disempowering, not to mention creates more barriers in the physical and psychosocial environment. A large number of support workers also have subpar basic life skills, offering very little for participants needing assistance with domestic tasks. For instance, one support provider consistently sent a worker so incapable of performing domestic tasks that I had to teach her food safety and cooking skills (e.g. even as basic as “how to tell if water is boiling” and “how to use a peeler”) and actually prepare all the food myself, putting double the strain on my health and disability.
Setting aside providers who lack skills and knowledge relating to disability and overcharge for inadequate service provision, a major issue for me has been about choice. NDIS is designed to give participants agency and control, deciding what services we need, how and when they are delivered, and who delivers them. Disappointingly, the scheme doesn’t often nor consistently live up to this standard – at least in my experience. There are few options for providers across a range of service types in regional communities, and again many are of such poor quality that participants’ ability choose is near non-existent.
I must stress that the NDIS has categorically changed my life for the better. I am working full time as a medical professional because I can access regular physiotherapy and occupational therapy, cleaning and home maintenance, mobility aids and assistive technology, and receive assistance from support workers. However, living and working outside of an urban area has absolutely tainted my experience of the scheme. Having a disability, especially as a young adult, creates countless barriers to independent living, participation in work and social activities, and being financially independent. The NDIS should help to overcome these obstacles, yet some of my experiences have made me the most vulnerable, powerless, and disempowered I’ve ever been. I feel that an overhaul is desperately needed – introduce standards and policies to ensure support workers are adequately qualified and skilled, cleaners/gardeners/maintenance workers/tradespeople/allied health/support workers are educated about participant-centred communication and behaviour, and parameters for payment rates are clearer and fairer for participants and providers alike. Similarly, specific efforts should be made to support NDIA staff working with participants to encourage consistency of LACs to avoid constant changes for participants. LACs should also be easily contactable, well-instructed about plans and ways to utilise funding, and receive adequate support and professional development. Mechanisms to report concerns about providers must be simplified and participants encouraged to engage in a process, which requires that reports be 1) taken seriously and 2) result in a tangible outcome.
The NDIS should provide opportunity and hope – much needs to be done to make this even somewhat of a reality for many rural and regional Australians with disability. Thank you for considering my submission.
Yours truly, Anonymous – living with physical disability, also current medical doctor living and working in a rural Victorian community