SUB.001.03143_01_0001
December 22, 2022
Disability Royal Commission
GPO Box 1422
Brisbane QLD 4001
Attention: Commission Chair The Hon. Ronald Sackville, AO KC
Re: People living with motor neurone disease and 1) COVID 19, 2) the NDIS.
Dear Mr Sackville
MND Australia is the national peak body of state organisations that support those living with and impacted by Motor Neurone Disease (MND). Since 1993, we have been the voice for the MND community. Our national and international networks help increase understanding of the disease and advocate for the needs of those affected.
MND Australia commends the Disability Royal Commission (DRC) for its work these past three years investigating matters of violence, abuse, neglect and exploitation against people with disability.
COVID-19
We congratulate the DRC for addressing concerns regarding the impacts of COVID 19 on people with disability. MND Australia has ongoing concerns about government policies and mandates moving forward. We are especially concerned that the health of people who are clinically vulnerable, which includes people with motor neurone disease, has not been adequately addressed in health policies as we move into a COVID variant world.
We wish to reiterate Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which says that states parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.
Current State, Territory and Federal policies regarding COVID 19 and its emerging variants, do not adequately address the potential impacts on people who are clinically vulnerable. There is no clearly stated policy addressing people with disability, rather the onus is placed on people with disability and their supporters.
This is an unreasonable burden for people with disability, especially for people with motor neurone disease, who are already seriously compromised. To note, there are no current tenable treatments for motor neurone disease and COVID places people with the condition at an exceptional risk.
We therefore strongly request that the DRC’s final report makes a recommendation regarding the need for specific and clear policies regarding COVID and the health of people with disability as a matter of priority.
Motor Neurone Disease Australia Inc.
PO Box 117, Deakin West, 2600, Australia
SUB.001.03143_01_0002
The NDIS
MND Australia has followed the DRC’s ongoing investigations into the function, implementation and issues around the NDIS and its agency the NOIA. The NDIS as a social insurance should be accessible to all people with disability to ensure they have the right supports throughout their life course; in fact this is a primary principle of the NDIS and is articulated in the National Disability Insurance Scheme Act 2013. However, as the DRC has unpacked across numerous hearings, the NDIS is in fact far from accessible to very many people with disability. This includes people with motor neurone disease.
We have many members who have been denied access to the scheme due to the nature of the condition. MND is a progressive degenerative condition with no cure and no treatment, it leads to profound disability. Further, people’s support needs will vary across the course of the disease. There is limited to no understanding of MND across the NOIA, this ranges from access, planners, local area coordinators, support coordinators and staff in upper management.
Denying access to the NDIS to people with MND because the condition is poorly understood is a breach of the human rights of people with MND. Arbitrary judgements about people’s functional capacity on any given day and the requisite for onerous expensive medical reports is not an appropriate response from an agency legislatively required to provide access to supports for people with disability.
We duly remind the DRC that the NDIS is one part of Australia’s obligation to implement the UNCRPD. Currently, the NDIS is failing to meet its own stated obligations and is also breaching Australia’s obligations under the CRPD. The UN CRPD Committee stated this to the Australian government in its concluding observations on Australia’s formal Review in 2019.
We therefore strongly recommend that the DRC makes a firm recommendation in its final report to direct the Australian Government to address the ongoing inconsistencies and lack of access within the current form of the NDIS by way of full formal review of the legislation (NDIS Act 2013 and all subsequent amendments) by the Australian Law Reform Commission.
We thank the Chair, the Commissioners and Counsel Assisting for their work on the Disability Royal Commission and we look forward to the DRC’s final report in 2023.
David Ali
Chief Executive Officer
Motor Neurone Disease Australia Inc.