This is a confidential submission relating to the above Bill.
Reasons seeking confidentiality in making this submission:
Witness Safety & Retaliation – to shield individuals from threats, harassment, discrimination or damage for speaking out.
Personal Privacy – to allow individuals to share sensitive personal experiences, medical histories, or traumatic events without having their identity published on the internet.
I am a person with a disability. My experience is that NDIA staff are capable, and will reduce plan funding from people who seek to raise internal complaints about handling of matters by National Disability Insurance Agency staff (NDIA), or seek to address issues about NDIS in forums outside of NDIA. I don’t say this lightly. I say this because that has been my personal experience. My funding is already significantly less than what I need to be able to eat, bathe regularly. I am barely hanging on, and will not survive if I lose further funding. The proposed Bill creates a situation where I may also lose further funding. So I feel compelled to make a submission. But it’s important that my making a submission, not be grounds for further NDIA reprisals or cuts to my NDIS package. Please accept this confidential submission, and make it anonymous.
Please publish this submission anonymously.
Thank you for your care and attention.
Page 1
This is a submission relating to the above bill.
I am an NDIS participant. I am an adult. I became an NDIS participant after severe functional decline after an
injury that could have been experienced by anyone. Prior to being an NDIS participant, I was active, able bodied, I had a full time job, I as completely independent, I travelled, I was an active and joyful presence in my community.
Disability is not a choice. In an instant, anyone’s circumstances could permanently change, and any person could end up needing significant long term supports for disability impairments. I ask that anyone considering and voting
I have been on the NDIS for several years. My NDIS supports are important because they allow me to participate in democracy, maintain relationships, eat regularly, bathe every few days.
As I write this, I feel very very sick. I need to see a doctor, but local Gps have told me my needs are too complex for a GP to help (there is no GP service of last resort), and I need to see a specialist. But no GP will write a referral to a specialist. I am pushing myself, there are tears rolling down my cheeks because I feel very very sick. I have been unable to read and check what I wrote. These things require supports that I don’t have funding for. I was unable to submit this on my own, too sick to find the webpage, upload it, but was able to access support for someone to upload it for me.
I’m likely to be unable to function well for a couple of weeks, after trying to write this down. I’m doing this because:
I believe I would be significantly adversely effected by this Bill. I believe this bill is not in the best interests of NDIS Participants. I believe this Bill is not in the best interests of Australian people. I ask that the Government withdraw this Bill.
Reasons:
The bill proposes increased administrative and compliance requirements. While simultaneously seeking to reduce funding.
Each administrative item that a provider needs to do, is at the cost of me receiving a support. Each administrative task I as a person with a disability, is at the cost of something else I need to do to survive – eat, change my clothes. These little things are very difficult for me.
As a participant, with a severe disability, the administrative and compliance requirements of Participants are immense. NDIA staff also consistently fail to communicate in ways that are accessible for me, or at times when I can function. I have communicated my needs in writing to NDIA staff, but that does not seem to make a difference. I have asked for records after interactions with NDIA have not accommodated my disability related communication needs (which they could have easily done), and notes consistently fail to reflect that the NDIA staff was the issue. All instances show notes where NDIA staff “tried to contact”, but no notes that that contact attempt was not accessible for me, the participant. I have tried to lodge complaints via NDIA complaints process (8 so far). The issue has never improved, I have had severeal funding cuts after complaints were made. The complaint has never resulted in a situation where my records were updated to reflect that the note was an error, or that NDIA staff attempted to contact me in a way that was not accessible, and should not count. My personal experience is that NDIA staff and NDIA’s records on whether they have attempted to contact a participant should not be trusted.
Page 2
Seeking to remove people with a disability because someone at the NDIA has determined a person “cannot be contacted”, is going to result in people with very severe disability, who are genuinely struggling, who have genuine accessibility challenges being removed from the Scheme. The government needs to give people with a disability a pathway to report their experiences, to an independent organisation that is not the NDIA or NDIS safeguards commission (who are incentivised to hide and obscure incidence of their own problematic practices). A person who may not be able to be contacted, may also have reasons for not being able to communicate related to the disability – they may be experiencing burn out (because increased demand for contact from NDIA, or having to interact with NDIA in any capacity – yes it’s that bad), who may not have the support they need in order to participate in communication, may be in crisis – requires more support. Punishing people who have severe disability for having severe disability, and not being able to participate in ways that a person without any disability can participate – is out of touch with disability, perverse and cruel.
As a person with a Disability I need more time to respond. I have trouble reading, so I need to
organise someone to come and help me read it. Often when it comes to NDIA communications, the people who come to help me understand what a letter might say, also often do not understand based on letters written. They are not clear to me. They are not clear to people supporting me. I have asked the NDIA to ensure that any communications are written clear / simple / easy to understand language. This is an accessibility request I have made, so that I can interact with the NDIA. NDIA staff have not yet accommodated that request. Calling the 1800 number for the NDIA doesn’t reach NDIA staff, but only Serco staff. Serco processes are also not accessible. They require long waits on hold, or long lengthy question and answer sessions. If I can only talk for 10 min every second day, the cost for me is immense. I need more time to respond, because I also need significant recovery time after anything I try to do.
If NDIA wants to enforce higher administrative requirements, then there
-
needs to be increase in funding to support people to meet those administrative requirements, to ensure there is no loss of supports as a result of those additional requirements.
-
The NDIS / government should prove and continue to be required to prove how those requirements are resulting in positive outcomes for Participants. And be forced to report on rates of being advised that something is unclear, rates of questions provided in seeking to reply to information, rates of when insufficient information was provided in response to their administrative requirements, and show how the NDIS Government has made changes to their process to make things simpler and easier and clearer. The increased requirements are arbitrary, and punitive. It is hypocritical to give participants less time, while also giving NDIA more time to complete reviews.
Giving NDIS Minister and NDIA staff more unchecked power is not the answer Further automation is not the answer As far as I’m concerned, there is not any independent entity or process for raising concerns or report concerns or incidents to about conduct by NDIA staff, or NDIS processes. The instances of inappropriate handling by NDIA staff, mentioned in other parts of this submissions are the tip of the iceberg. Until there is a robust ethics committee and organisation external to the NDIA and overseeing actions by NDIA and reporting to Senate, Until issues with internal NDIA processes are addressed, and their work is reviewed and scrutinised with a view to improvements for service delivery and outcomes for participants and costs, and other positive benchmarks, a legislative change should not be considered. Further automoation is not the answer
Bill is not evidence based As far as I can tell, there have been no independently validated trials to determine that the proposals outlined in the bill are going to be effective at reducing support needs for the people that the NDIA determine ought to remain on the NDIA
Page 3
In fact, aspects of what is proposed in the bill have been tried in other countries and have failed. I will
leave the exploration of those trials to others.
Reduction of social and community participation – the details may not be as compelling as you think When a support provider does a shift – say a participant is really unwell, and needs to be driven to a doctor. The only way to access funding for the travel cost of the support provider getting a participant to their doctor, is if the provider uses a “Social and Community Participation” item code when billing. Is going to see a doctor when very unwell actual social and community participation? What about if you need to pay a support worker to take you to see a physio or OT, because it’s cheaper for you to pay a support worker to take you, than it is for the physio or OT to see you at your house? Is that social and community participation? The label is arbitrary, and there are reasons someone might be using a community participation item code, other than, because they are being supported to ride a bus, or go to the park (all of which are vital and important for all human beings). If you want more or better information about what people are using their funding for, first the price guide needs to be improved. The item numbers in the price guide, as they currently are, are not an accurate way to determine what funding is being used for when it comes to personal care vs. community social participation.
Being forced to stay in one place, with no change of scenery is imprisonment. Removing choice of who you live with, who touches your body, who is in your space, is what happens when you are in prison. People need to be continue to be supported to engage with and access the community, and people with a disability should have the same rights to choice, control of their bodies, access to broader society as others. We have things to contribute too. Our contributions are not less because we need help from others to make them.
These rules risk deterioration of people with a disability due to their demands and the effect of those demands on people with a disability.
Dealing with the NDIA is the most stressful thing in my life. NDIA staff are combative, unclear, nothing I can do or say, or anyone speaking for me does or says, is good enough for them. Dealing with NDIA staff is dealing with someone who has already decided not to help you, then having to convince them that help is needed. It is much harder to talk to someone who has already pre-determined something about you. Increasing frequency that participants are forced to interact with NDIA or their Serco front-people, and increased NDIA administrative demands, is going to result in increased burnout. In burnout, everyone’s functional capacity is decreased. When functional capacity is decreased, they need more support, which increases costs within the NDIS. The proposals in the Bill need to be thrown out, and the entire approach needs to be reconsidered.
Rigidity is the enemy of cost-effectiveness Right now, if I need a prescription for medicine (I would pay for the prescription), but I cannot always access it myself. I have to go with a support person to the pharmacy, to pick up a prescription. They support person charges minimum 2 hour shift of $50-$60 per hour. The pharmacy would also deliver
for $5. I cannot afford to pay $5 delivery fee. If I didn’t have my disabilty I would walk or drive to
the pharmacy to pick it up. My disability impairments prevent me from independently getting that medication. But the NDIS no longer allows for me to charge a delivery fee for my prescription to be delivered. If my disability prevents me from walking or driving to pick up the medicaiton, from otherwise accesisng the medicaiton, would you consider that a cost of my disability? What if I told you my disability made me immuno-compromised, so stepping into a pharmacy in the middle of flu season, could result in a life threatening event? Consider also the support workers duty of care with regard to my safety. Them putting me in a pharmacy may result in an serious of events that might result in death for a person who is immunocompromised. $5 vs $100-$120
Page 4
There are common sense and more cost-effective solutions available. Rigidity is the enemy of cost-effectiveness. This Bill is not about saving money.
Increasing costs for disability services reflects an increased need I do not believe this Bill is going to make services more affordable, address service gaps for participants, address cost of accessing supports, increase quality of supports, increase quality of life for participants, make our society better. Please throw out this Bill, and sit down and figure out how to increase access to supports, and provide supports that are genuinely creating improvements, for people who are genuinely struggling and needing help.
Requiring all treatments to be undertaken Who determines what treatments are appropriate to have received and undergone as a person with a disability? What if you are a person with a rare disability? What if you have several diagnoses that interact in a unique way that mean that standard treatments are inappropriate or dangerous for you. I understand from the Bill that there is not a requirement in determining whether all treatments have been undertaken, for the NDIA to communicate any treatments they consider may be appropriate for a Participant to have explored. I think that is a mistake. I also think this is a problem, and creates a scenario, where the NDIA sets a standard for access that people are never able to meet. There is also the issue that NDIA staff are not medical professionals. What gives them the right to determine what is safe or healthy for a participant or appropriate for a participant to undergo? This is not consistent with fair, democratic, process.
People with complex challenges need more time and more flexibility rather than less
People with complex challenges need more time and more flexibility rather than less There is a current issue that I seem to be seeing everywhere. Organisations, services have a process. It is a standard process. But if a person is unable to engage based on that standard process, there is no safety-net process for easier access. Services of last resort are dying out, and effectively, in many instances, there are no longer services of last resort. Whether that be health care, GP access, dental, disability supports. The NDIS was, in effect, to be a service of last resort. A safety net process for those with the most severe disabilities. As a service of last resort, it needs to be accessible, and clear and able to be used by people who, for whatever reason, have needs that are not able to be met via standard processes. The new Bill creates changes that mean that the NDIS will less accessible and in some case become inaccessible to people with the greatest need and greatest challenges. This creates a system only being able to access NDIS supports if you can afford treatment, afford to pay for someone to help you collate documents, help you to understand the process. The approach proposed in the Bill is out of step with the reality of the challenges experienced with people with a disability, and will undermine outcomes for participants. The proposed changes under this Bill will introduce systems that will be inaccessible to those with the most complex challenges, unable to be met by other services (often because of inability to participate in “standard” processes), and with no or reduced access to safeguards or avenues of independent review. This will increase instances of people falling between the cracks. There is not one assessment tool that is going to be appropriate or accessible to every person with every type of severe disability in Australia. Because everyone has different needs. And each person has different combinations of challenges, and barriers, which require an individual person-centred approach, and in some cases, person-specific pathways that have oversight and involvement of human decision making. The NDIS is the place where access to alternative pathways is critical. The proposed changes undermine this.
Page 5
The proposed changes will further erode access and services for people with the most severe conditions.
Some final notes The proposed changes represent further shift in focus and approach away from “we will help where we can”, to, “we will not help unless” (the cousin of “we won’t fund that unless” which before long becomes “we won’t fund that” and there is no information provided after the unless, to just “no only what we say in the ways that we say, don’t question us” (regardless of whether that is suitable or appropriate for the person needing support, whether the decision makes sense, is reasonable, is explained, discriminatory, ableist, a good use of funding or not). Trying to access supports from a service with the latter approach, requires a level of ability, that many do not have. Greater rigidity is not the answer.
Australia is a signatory to the UN Conventions for People with a Disability. Australia is not meeting is obligations as signatory in administering the NDIS, in proposing these changes to the NDIS. This Bill is not consistent with Australia’s obligations to People with a Disabiklity under international law.
Everyone should be concerned by systems that reduce external scrutiny, and commonsense right to appeal. Everyone should be concerned by introduction of systems that reduce avenues of feedback, or enforce avenues of feedback that go no where.
If you want to move people to another system, the other system needs to be set up and running, not just move people to literally, nothing. The effect of this Bill, is to undermine the pathway to disability supports for those with the highest most severe needs.
This bill has been advertised as being the lifeline to preserving the NDIS. But this Bill is
-
is not going to increase outcomes for participants
-
is not going to increase quality of services to participants
-
is not going to reduce amount of money circulating in the economy (because is going to drive funding through large providers, rather than smaller providers)
-
is not going to improve quality of life for people with a disability
-
is not going to reduce barriers for people with a disability
-
is not going to lead to more fulfilling lives for people with a disability
-
is not going to reduce stigma for people with a disability
-
is not going to improve access for people with a disability.
-
is not going to save lives
-
is not going to improve amount of need, for people who are struggling and need supports.
-
is not going to allow for iteration into an improved system over time (because it is reducing avenues of seeking reviews, access to due process through tribunals and so forth, and restricts and reduces and in some cases removes feedback mechanisms which drive improvements of positive change)
-
is going to reduce ability for people with a disability to participate in the economy, in every day things What it will likely do:
-
increase complexity of systems
-
legislate systems with no oversight and avenue for recourse
-
increase need
-
increase levels of people with unmet needs
-
decease capacity for those on the NDIS
-
increase cost of the NDIS over time Page 6
-
decrease quality of services
-
decrease quality of life for people needing to interact with the NDIS, who have disablities, who have loved ones who are disablities.
-
increase instances of people, tax payers of Australia, falling through the cracks
-
increase instances of abuse and neglect
-
increase rates of suicide and death with no recourse
-
fail people with the most complex challenges.
-
likely still going to cost tax payers a lot of money.
-
make access less fair.
-
make decisions less clear.
-
make accessing clarity about reasons for decisions less clear.
-
increase instances of using tokenistic reasons provided by the legislation in arbitrary ways to decline access, rather than as part of a robust system genuinely working in the best interest of tax payers and people with severe disability.
-
decrease outcomes for people with a disability in all life areas.
-
increase divide between people with disability and others living in Australia. The approach proposed in the bill
-
is inconsistent with democratic process There have been reports about seeking to cost reduce the cost of the scheme. The framing and on focus on costs is arbitrary and lazy. Focusing and framing around “reducing the costs of the scheme” is a choice to focus on costs rather than outcomes, improved services. A choice to choose boosting funding in pockets of some, rather than to ways to create best benefit.
This Bill is not preserving the NDIS for future generations. This bill is not about improving the NDIS, getting better outcomes. This bill is the end of the NDIS and the idea of the NDIS.
In order for the NDIA to be fair to all, all tax payers and all people seeking to access support from the NDIS, all systems used by the NDIA need to be completely transparent. And there need to be safety mechanisms to protect agency, choice for people, and people with disability against harm including systemic harm.
If you propose to bring in a legislation that all treatments need to be exhausted, a participant’s medical team state, and confirm participant has undergone all treatments, and the NDIA do not accept that, then the NDIA should be forced to communicate in a way that is clear and actionable their standard of treatments, what treatments they consider have not been addressed, provide templates and examples for how they consider aspects of whether a treatment has been addressed. Their decision making process needs to be transparent and robust. Currently, the NDIA’s decision making is not transparent and robust.
Everyone must work together to try to create a system that works for everyone.
The proposed Bill is bad policy, and:
- is going to further erode societal access of people with a disability, to every day society.
- by it’s design is going to fail the most complex and disabled people on the NDIS. Approaches to address inefficient management by NDIA, human rights concerns, service gaps, programs to determine other pathways have not been explored.
Summary:
I believe I would be significantly adversely effected by this Bill. I believe this Bill is not in the best interests of NDIS Participants. I believe this Bill is not in the best interests of Australian people.
I do not support this Bill. This Bill is extremely concerning. I ask that the Government withdraw this Bill. I ask that anyone voting on this Bill vote to block this Bill from coming into effect.
Page 7
Support of this Bill, is support for demolishment of the NDIS. Please reject this Bill.
Thank you for considering my submission.
Page 8