Submission 2205
I am a NDIS participant and am scared for my future under this new Bill. I am on a Disability pension because of my injuries from a car accident 7 years ago.
The area where I live is classified as MM6 on the Monash Medical scale. This allows for Support workers to charge top dollar significantly more than their city counterparts.
Firstly I support the need for change so that future sustainability for the NDIS is guaranteed. What is being proposed is making me feel very afraid.
I am grateful for the supports the NDIS has provided me with but lets examine some of my big challenges.
Without the NDIS my future is very uncertain and scary. I feel very alone and isolated.
The system is broken. Where there is very limited or no informal supports like my environment this results in significant carer burn out potentially placing me in a vulnerable position. With the proposed draft cutbacks which potentially will limit access to carers this is really scary for me. Having access to support workers easily will help alleviate and minimize the risk of burnout of my primary carer.
The government places big expectations on informal supports without, from what I can see, little or no backup to enable them to continue caring. Eventually they may well choose to say I cant do this any more.
I am very concerned that the proposed changes may increase the expectation that family members and unpaid carers fill the gaps where funded supports are reduced or restricted. Informal supports are not unlimited and should not be treated as a replacement for funded disability supports. This is especially concerning in rural and remote communities where services are already difficult to access and carers are already stretched beyond capacity.
I live in a remote rural rain forest environment where its a 2 hour round trip to the nearest town with Woolworths. I have no ability for STA (Short term accommodation) to give my primary carer who is burnt out a break from me.
Submission 2205
Our area is classified MM6 which creates its own set of challenges. My mobility issues severely restrict what I can do including accessing the community without support workers. Another issue that is challenging for me is this. I have a mobility scooter which allows me to access my environment but if it needs service and/or maintenance it has to go to Cairns. This requires the provider to drive to me collect the scooter and back to the workshop before any work is done. Its a 4 hour round trip at a cost of $150 an hour. On top of that there will be the costs of work and parts if necessary to fix what ever the issue is seen to be.
With the proposed draft cutbacks my question is how will I be able to afford this from my plan. People living in rural and remote areas already face much higher disability related costs than participants living in major cities. Those higher costs are outside of our control. If plans are reduced or funding becomes more restricted under the new legislation, rural participants will be disproportionately harmed because the same supports already cost far more to access.
There are limited carers where I live who can help me access the community and medical appointments at Cairns when required (a 4 hour round trip) as none of the relevant services are easily accessible. They are I believe there also to help me live the best possible life. Regional provider scarcity also significantly limits what the NDIS describes as “choice and control”. In many rural and remote communities there are either very few providers available or none at all.
Participants are often forced to accept whichever supports are available regardless of suitability because there are simply no alternatives. This means people in remote areas are already disadvantaged compared to participants living in metropolitan areas before any further cuts or restrictions are introduced.
We are encouraged to be actively engaged in the community but given that there is significant costs and travel time and a limited community activities wise this is difficult.
I do weekly volunteering at the Local Library (2 hour round trip) to try and help seniors with their technology challenges and the library receives very positive feedback about my work. This for me is important I am giving something back to the community. More importantly its good for my mental health.
Submission 2205
Supports that allow me to volunteer and stay connected to my community should not be viewed as unnecessary. They help prevent isolation, mental health decline and deterioration in my overall wellbeing. Reducing supports that maintain community participation risks creating far greater long term costs for both the health system and disability system.
For me personally I feel that the community in general has been led to believe by the media and the government that participants in general are rorting the system. I try very hard to make sure my plan is spent wisely sometimes choosing not to do something I would like to do so the NDIS won’t accuse me of doing the wrong thing. This fear is for me very real. This is really unfair.
I am concerned the proposed changes may narrow interpretations of what is considered “reasonable and necessary” support in ways that disproportionately impact people living in rural and remote areas where support costs are already significantly higher.
I am also deeply concerned about the increased use of reassessments, funding periods and ongoing review processes under the proposed changes. The uncertainty this creates is extremely destabilising for people already living with
significant disability and mental health impacts. Living in constant fear that supports may be reduced or removed creates enormous psychological stress and makes it difficult to plan for the future or maintain stability.
Another major concern is the ability to access the evidence and reporting now increasingly required by the NDIS. In rural and remote areas, allied health professionals are already difficult and expensive to access. If participant budgets become tighter or more restricted, many people may no longer be able to afford the very reports and assessments needed to prove their disability and maintain access to supports. This creates a deeply unfair situation where people are expected to continually justify their disability while being denied the resources needed to do so.
By allowing and supporting me to live the best possible life in a nice environment I am saving the taxpayer money. My mental health is severely impacted as a result of this uncertainty about my future. I am ready to give up on everything. If supports are reduced and my primary carer can no longer cope, this will not remove my support needs. It will simply shift those costs onto hospitals, emergency services, mental health systems and other crisis services. Removing supports that keep
Submission 2205
disabled people stable and connected to their communities is not long term sustainability. It creates future crisis.
If supports are significantly reduced or removed, there is a very real risk that people living in remote communities may be forced to leave their homes and communities in order to access care and basic support needs elsewhere. For some people this may increase the risk of institutionalisation, homelessness, hospitalisation or complete dependence on exhausted family members. This is not independence, inclusion or dignity.
Australia also has obligations under Article 19 of the United Nations Convention on the Rights of Persons with Disabilities which recognises the right of disabled people to live independently and be included in the community. I am deeply concerned these proposed changes risk undermining those rights for people living in rural and remote communities.
In conclusion
Please consider the budgetary needs of rural and remote participants for their plans to ensure we don’t become a major burden on the health system. We are not in the city where everything is readily accessible We don’t want to give up on trying to live a life where we are engaging with and contributing and enriching our community.
I urge the Committee to:
- recognise the significantly higher costs faced by rural and remote participants
- ensure reforms do not disproportionately disadvantage MM6 communities
- protect community participation and support worker access
- recognise that informal supports are not an unlimited substitute for funded supports
- ensure maintenance, transport and travel costs for assistive technology are properly considered
- ensure reforms comply with Australia’s obligations under the UNCRPD
- prevent reforms from creating further carer burnout, isolation and mental health deterioration for participants living in remote areas
- ensure participants are able to access the evidence and allied health reporting required to maintain access to supports
- ensure reassessment and funding review processes do not create unnecessary psychological harm and instability
- recognise that provider scarcity in rural and remote communities already limits
Submission 2205
genuine choice and control • ensure reforms do not increase the risk of institutionalisation, homelessness or forced relocation for disabled people living in remote communities
Thank you for reading my submission.