Submission 978
Submission on the NDIS Amendment Bill
My name is . I am disabled and a NDIS participant.
I am submitting because I am deeply concerned by this Bill and do not support it. I strongly believe that the changes to the NDIS that the government are proposing will severely harm people with disabilities in Australia, including killing disabled people. Support through the NDIS has the capacity to greatly improve participants quality of life, independence and dignity. This Bill seeks to erode people with disabilities rights and wellbeing, and ignores the complex lived experience each person with a disability has. Instead, this Bill seeks to reduce disabled people to rigid categories, without regard for their personal circumstances, and the impact of reduced or inappropriate supports on their wellbeing.
I have direct lived experience of how the correct supports through the NDIS can have an enormous positive impact on quality of life, wellbeing and independence. I am extremely concerned by the impact that this proposed Bill would have on me.
My Key Concerns:
Eligibility and assessment changes:
The Bill’s definition of ‘functional capacity’, and use of a standardised assessment tool to determine functional capacity is alarming and inappropriate. This will overlook the lived reality of disability, including the dynamic nature of living with a disability, and will not be able to correctly capture the supports an individual needs. It is inappropriate to exclude reports and recommendations from doctors and allied health professionals, who are experts and are able to build relationships with participants, and thus are better placed to understand that person’s needs. The use of a standardised tool cannot capture the full picture of a person’s life and what supports will best serve them. The disability community is extremely broad and varied, and people with the same disabilities still have very different support needs. The risk of people with disabilities not being given access to the NDIS, as well as losing necessary supports is far too high.
I am extremely worried about being forced to undergo a reassessment using this tool, which very little is known about, used by a stranger or an automated process, and being reduced to checkboxes, not a person. I am concerned that this tool will not be able to capture the lived reality of my disability, and that I will not be able to engage with the assessment process due to how my disability impacts my communication. I am distressed that it is possible that if this tool decides I am somehow ‘not disabled enough’, that I could be removed from the NDIS.
I am also deeply concerned at the changed requirements for an impairment to be considered ‘permanent’. The government does not have the right to control mine, or other
Submission 978
disabled people’s bodies, by withholding support if we do not undergo interventions the government has decided are needed.
Suggesting that disabled Australians would be required to access any available intervention regardless of expense or geography clearly means that people with disabilities will be excluded based on where they live and how much money they have. This is not equal access to NDIS supports. This also has no consideration for the dynamic nature of disability, day to day as well as over a lifetime. Progressive conditions, as well as changes in circumstances in someone’s life mean that even if a certain intervention was supportive at one point in time, impact on functional capacity can change. I am personally also concerned about how the government plans to define permanence and interventions. My disability is permanent, and is intrinsic to who I am. I am very concerned about how the government will try to frame me, and people with my disability to reduce access to the NDIS.
Changes to planning:
The proposed changes to NDIS planning reduce participants rights and dignity. The Bill greatly limits mechanisms for plan reviews. This leaves very few options for participants if plans do not meet their needs.
It is extremely concerning that the Bill proposes that the Minister has power to alter plans, and that ‘renewed plans’ would be made without participant input. This removes choice and control from the NDIS planning process, and means that changes in participants lives and needs would not be recognised. It also means that there is Ministerial power to determine plans without any regard for professional recommendations.
The proposal that the NDIS will be able to suspend plans if a participant is not contactable, and then have the ability to remove participants from the scheme if they remain uncontactable is horrifying. The Bill does not require contact from the NDIS to consider the participants accessibility needs or consider if a plan suspension would pose a risk to the participant. There are many, many reasons a person with a disability may be uncontactable, especially if their accessibility needs are not considered. There are already enormous challenges with contacting the NDIS, and with this communication being accessible. The risk to participants with this proposal is enormous.
The decision-making shift from supports being determined by the needs and goals of participants to ‘financial sustainability’ is further terrifying for participants as it clearly outlines that the government has put a price tag on our lives and wellbeing. It assumes that there are informal supports available, which for me, like many others, there are not. If there was, it would not be fair to assume that people in my life would be able to give up employment, family commitments and other commitments in order to support me. This proposal to the Bill also flattens participants to their impairment that they access the
Submission 978
scheme on, and has no consideration for the complex reality of our individual lives. I am a whole person and my experiences and needs reflect this.
The proposal that scheme wide support determinations can be made by the Minister, with no regard for supports that have been determined to be reasonable and necessary, actively endangers the lives of people with disabilities. The disability community is extremely broad, and funding decisions should be made on an individual level. The Bill also removes the capacity to review this decision, removing choice and control, and endangering participants who may lose essential supports. Caps in supports similarly endanger participants and show no regard for actual needs.
Comments made by the government surrounding this Bill in regards to reducing ‘social and community participation’ have seemed to suggest these supports are a luxury or unnecessary. This is not true. I am alarmed by the rhetoric that leaving my house as a disabled person is a luxury. I use this support category to access appointments, the chemist, grocery shopping and leaving the house. None of this is a luxury.
Loss of supports:
The proposed changes in the Bill are very pointed towards reducing the funding a participant receives, and removing the ability for participants to get funding decisions reviewed. Funding and access decisions seem to be reprioritised to being about spending less money, regardless of disabled Australian’s actual needs and with no consideration to expert recommendations. I am extremely concerned about how reduction and loss of supports will impact me, and the entire disability community in Australia. My current supports have greatly improved my quality of life and independence. Losing these supports would have a detrimental impact on my wellbeing. The Bill suggests alternative supports and informal supports would take the place of NDIS supports, however, there is no alternative. The loss or reduction of NDIS supports puts at risk mine, and many others, physical and mental health, housing and community access.
What needs to be changed or be protected:
Choice and control as well as independence and dignity must be central to the NDIS. This Bill greatly reduced and even removes these values from the NDIS. Australians with disabilities accessing the NDIS must be seen as whole people, and have their needs prioritised. We must have mechanisms to review plans, and access and planning must be based on reports and recommendations by doctors and allied health professionals, not assessment tools run by strangers and automated systems. Communication in every part of the NDIS must be accessible. This Bill determines that disabled lives are too expensive and should not be
Submission 978
supported. This is egregious and the totally decentres the NDIS from what it should prioritise, supporting Australian’s with disabilities.
I ask the committee to consider my lived experience when reviewing this Bill.