Submission 1764
I am a disabled person who has been supported by the NDIS for 5 years. I request that this bill be withdrawn. I strongly oppose the proposed changes.
New participant engagement rules, compliance requirements and administrative obligations:
Disabled people are already overwhelmed with the current administration requirements to be on the NDIS. Cutting support coordination while simultaneously increasing these communication requirements is an unreasonable burden for people who already have impairments. This especially effects people like myself who have communication impairments. Failure to keep up with these requirements should not put supports we rely on to stay alive and function at risk. If these measures are passed as they are, it will lead to vulnerable people having their essential supports cut off. This puts us at risk of physical harm, social withdrawal, withdrawal from essential supports, obligations and engagement with society.
Disabled people are trying to do the right thing but the complexity of the system means that it’s easy to ‘mess up’ accidentally. I have tried to get written clarification from the NDIA about their rules. Last year I ended up emailing 39 times back and forth. NDIA staff members repeatedly linked legislation without explaining what it meant. I ended up having to email the minister, which did not resolve the issue. Finally I resorted to filing a FOI request instead which finally clarified what I’m allowed to spend my funding on.
So, the system needs to be simplified. The NDIS is meant to support people to live their everyday lives and make things easier for us. The NDIS should NOT be an extra burden that they need to constantly navigate the complexities of just so we can stay alive. Especially when we have impaired functional capacity, it’s counterintuitive to say that you’re trying to support us to be more engaged while also giving us extra work to do. Trying to implement punitive measures against disabled people (like pausing or cutting off our supports) will make supports less accessible for the people who’s lives depend on them most.
Instead, supports should be assumed to be sufficient and automatically maintained & rolled over unless a specific change is needed. This safeguards supports that are working, so disabled people aren’t constantly worried about essential supports for permanent conditions being suddenly withdrawn. NDIA will also have much less administrative load if they’re not constantly re-assessing and requiring justification for the same supports participants have been using for years.
This will create a sense of stability that leaves us to focus on things that matter. This is the original goal of the scheme – that we’re able to participate in everyday life to reach our maximum capacity.
I have a close family member who is also on the NDIS. They have an intellectual disability, and have no involvement with the management of their plan. As they do not have the capacity to meet the requirements on their own, they will be 100% reliant on someone else to maintain the
Submission 1764
communication requirements on their behalf. This means that the people who rely most heavily on the scheme are at the most risk of having their supports cut off through no fault of their own.
Changes to plan reviews are reassessments:
It is absolutely essential that disabled people are able to adjust and update their plan as needed, or as their circumstances change. When I wanted to return to university, I requested a change of circumstances in December so that I would have a new suitable plan in time for uni starting in March the next year. The change of circumstances review took so long that when the May census date came around, I was still waiting on the change of circumstances which meant I had to defer studying for that semester. This happened during 2 different semesters, so now I am a year behind.
The other factor is that often plan reassessments are needed due to having service providers that do the wrong thing and cause funding to be depleted against our wishes. When this happened to me I was not at fault. However, I was left without essential supports for months.
What needs to happen instead: plans should be a living document that is able to be updated and adjusted as needed to ensure people have continuity of care. Having any small adjustment to a plan trigger an entire plan reassessment means that disabled people are having to weigh up whether they should suffer due to unmet needs or risk essential supports they rely on being taken away. This is my current situation, I am delaying putting in a quote for a Capital support, an accessible bike that would increase my independence and ability to access the community, because I can’t risk the reduction in capacity that would result from essential supports being cut.
If participant’s plans were flexible and accessible, I would have been able to finish my degree by now and would likely be employed. Instead I continue to live in poverty and lack agency to change my circumstances. We rely on these supports for extremely essential life functions. ‘Disability support’ can sound abstract but this is our real lives. Please don’t further restrict these supports, we’re just trying to live our lives.
Changes that allow funding categories to be adjusted across the board:
Our basic, necessary supports being treated like a topic that is up for debate has created a notable increase in societal ableism that is so hurtful and damaging. The idea that a basic dignity like being able to access your own community could be slashed by 30% demonstrates that we are being treated differently to able people, who are able to access the community whenever and however they want to. This unaccountable power to slash essential supports would lead to disabled people being 30% less present in society.
The NDIS was created as a response to disabled people being isolated and abused in institutions, some trying to cordon us off from the rest of society just means that all those same issues will return. It’s essential that we remain visible in public spaces, that everyone knows a disabled person in everyday contexts like the workplace, education, local community places like cafes etc
Submission 1764
so that society understands that our basic dignity and care needs are not optional extras. If it’s a normal everyday thing for an able person to go to the café on the weekend, why would a disabled person doing the same thing be considered an optional support that it’s okay to cut?
We have unique, individual needs, and you should not just treat everybody the same because it’s financially convenient. Participant well being should be the priority, not the budget. These changes will reduce our quality of life and put us at risk of extreme harm. Our supports are recommended for a reason, they’re not optional. If my community access funding were cut, I would have to start deciding between going to university or picking up medicine, or buying groceries, or attending medical appointments or allied health appointments. You can’t use a blanket approach because everyone uses their supports differently.
Automated administrative systems:
e Trying to remove human empathy and decision making from the process will lead to terrible outcomes. Two people with the same diagnosis or listed impairment can have extremely different support needs. A machine can’t really understand the complexity of these human variations.
Everyone deserves to have a plan that is fit to them personally and specifically, as we are not generic people and even within diagnostic groups, our needs are not all the same.
Due to my needs not being accounted for properly, I am having to spend a substantial portion of my own money (which I really don’t have a lot of, as I’m on DSP) on supports which the NDIS previously covered. This means my already extremely tight budget isn’t enough to cover the things that I need. I’m having to make difficult decisions like which specialist I should see, a neurologist or a cardiologist? But now there’s no way to save up to access specialists who are not accessible through Medicare. These new budget constraints are also meaning I have to ration the non-PBS medication I was prescribed by my specialists.
This is having a very negative impact on my quality of life because DSP is already below the poverty line and there is no room to accept additional disability related financial responsibilities. The NDIS was created so that disabled people could access the supports they need. But every support that is cut means we are having to make choices that leave us without things we desperately need.
NDIA reforms:
The lack of clarity on the future of the NDIS supports is incredibly destabilising and stressful for NDIS participants. The new planning method seems exhausting, stressful, and unequal. It’s not being tested on all disabled people (the trials excluded nonverbal people) so it’s an inaccurate representation of our collective needs. I wrote an email in April to express my concerns with the Participant First feedback program, namely the limitations and inaccessibility of how the feedback was collected as it excludes many crucial participants and their experiences. Many
Submission 1764
NDIS participants may not be able to communicate verbally within these limitations, meaning that those who need the supports the most will be less likely to be heard. I suggested that support coordinators and/or care team members be allowed to be involved in these discussions to help aid the communication process, as well as allowing other methods of communication other than just verbal answers so more participants are able to contribute. The more accessible the mode of communication, the more accurate data will be collected as participants will be able to provide more detailed, insightful answers to questions than if they’re forced to communicate in a mode that is inaccessible to them.
The issues with the testing process are indicative of wider issues where disabled people’s ability to participate is not being considered properly, including the process of doing the submission, which has been rushed through faster than other legislation has been. And plain language translations of what this means have not been made available, which has meant I needed a lot of help to write this.
What should be protected:
The cost of disabled people’s exclusion from the economy is already extremely significant, which means we are at increased risk of chronic unemployment, poverty, social isolation, poor mental health, homelessness etc. A big part of the NDIS is that it allows the economic participation of disabled people directly and indirectly, by supporting other areas of function that allow us to be able to study and work.
Not only would it be personally devastating to have to defer or withdraw from my studies, but it also means that I won’t be able to finish my degree and enter the workforce. If a drop in supports leads to disabled people having to leave study/volunteering/work, that will be a significant hit to the economy. This will also mean that support workers are out of work, and that supports previously provided by competent support workers will have to be provided by informal supports with no experience being a disability support worker. They will have to reduce their workload or withdraw from the workforce to take on a portion of this extra unpaid care labour. Short term cuts will lead to decreased overall productivity.
Please withdraw this bill so we can keep our supports in place and focus on achieving our goals. This is an opportunity to actually listen to disabled people and hear our opinions about our own care. We have a lot of ideas that will result in better outcome for us AND that would enable us to be able engage more with our community and give back.