Submission
My name is Louise Bannister, I live in Canberra, ACT. I am 63 years old. I have a lifetime of disability, I was born with Cerebral Palsy. I am a taxpayer, a parent, a partner. The NDIS has made it possible for me to age in place in my now wheelchair accessible home. The NDIS has also provided funding for my power wheelchair which allows me to keep participating fully in my community, as a respected disability advocate.
I do not support the new Bill. The NDIS should be a means to help me access the necessary supports and the right equipment I need in order to maintain my independence. In doing this it allows me to continue to be fully included in my City and for me to be able to participate and contribute in the fullest way I am able. It should not be prescriptive or limiting. It should not be ableist or reliant on ignorant algorithms. We are complex humans who need individual understanding by appropriately trained staff (some of who should be our disability peers). An accidental ill informed or wrong decision could mean life or death for some participants. It is a serious breach of our human rights not to have any right to appeal if a decision is wrong or seriously damaging or limiting for participants and their families.
The repercussions of this Bill if it is adopted will be absolutely devastating to people with a disability and in some cases will cause fatalities. It removes all the foundations we fought so hard to have enshrined: Independence and autonomy, Dignity of Risk; Choice and Control (OUR choice! OUR control! Not bureaucrat’s choice and bureaucratic control); the right to be able to choose who we engage in our lives to support us to live our best lives; and the right to choose where, and who we live with. This new Bill feels like we are being forced back into the dark ages of disability, where we had no choice and were forced to live in shared, institutionalised settings. A time when we couldn’t access the community on our terms and had to undertake set activities deemed by the powers that be, that they thought should be suitable for people with disabilities (Adult day centres and Basket weaving 101!)
I have a life long permanent disability, cerebral palsy, and like many folk with CP as they age, I now have Post Impairment Syndrome. So I have gone from being totally ambulatory in my teens, to a walking stick user in my 20s, crutches user in my 30s, manual wheelchair in my 40s and now a part time power wheelchair user
in my 60s. I have been poked and prodded and tested for most of my 60+ years. Iam very well aware of what my functional abilities are, as are my physiotherapists. I am angry that from 2028 I will be subjected to functional capacity tests. Probably administered by someone who has had minimal training in disability assessment and very little knowledge of cerebral palsy.
We have fought so hard to move away from the medical model of disability, to have this assessment brought in under the guise of a social model of assessing capacity. I say Bullsh*t! How I clean my teeth or shower, or whether I can stand
and balance on one foot, has nothing to do with whether I can access my local shopping centre or dentist’s office.
And what in the world is the proposed “All Appropriate Treatments” test for permanent eligibility to the scheme? I’m 63, I’ve had multiple surgeries as a child, and 50+ years of physiotherapy and other treatments. I do not want BOTOX injections or brain stimulation therapies. But who decides what therapies are appropriate or not? It better not be one of those inexperienced administrative people that have done some questionable and short training course. Whatever happened to NOTHING ABOUT US WITHOUT US??????? I find this whole proposal offensive and dehumanising. We are talking about my body, my autonomy, my dignity. This treatment test is an extremely abelist concept, and again reliant on the medical model. Society still sees me as broken and defective therefore I must submit myself to treatments to be healed and mended. I am not broken or defective. Let’s look instead at funding for improving community infrastructure, education, transport and flexible job options to make them fully accessible and inclusive, before you legislate that some desk jockey gets to decide whether I have or haven’t tried hard enough to CURE myself!
I have self managed my supports since commencing on the NDIS in the ACT NDIS trial of 2014. I pay for equipment, home modifications, and services out of my own pocket when I can afford to do so. I have chosen in the majority to use sole traders as I have found they are reliable and do excellent work. Prior to the NDIS I used a well known local disability service provider for domestic cleaning, and most of the time I would have to re clean when the workers left, as their work would be sub standard. I truly believe some of the younger workers had never cleaned a toilet or washed a floor in their life. There was also no consistency of workers, I would get a different cleaner most weeks and have to go through the cleaning routine required again and again, so there was less time spent actually cleaning. When you engage sole traders who are providing domestic support, they are experienced cleaners, they are reliable and able to be flexible in their service delivery. I also use HireUp to engage specific folk I have met through my advocacy work, that I trust to come and assist me with tasks and supports.
For years the NDIS has demanded that we get Occupational Therapists to report on each piece of Adaptive equipment or furniture item, or home modification that we might need to make our lives more independent, safe, and comfortable. These reports have cost thousands of dollars out of our NDIS funding. Then some unqualified admin person decides whether to accept the report or deny it. More often or not it would come back as denied with some ridiculous request.
My example is I lived in a split level home, and with my mobility declining I was becoming more reliant on my wheelchair so accessing the bathroom/toilet safely was becoming impossible. The living areas with separated from the sleeping areas and bathroom by a 15cm step and hallway dividing the house in two down the middle. The house is only very small. In 2016/2017 the OT’s solution requested (after investigating and exhausting all other options, including buying a more accessible home!) was to raise the floor of the living area so it was level with the
sleeping and bathroom portion of the house. The OT clearly stated why a platform lift was not an option (it would take up most of the circulation space in the small lounge room and cause a significant trip hazard. It would also be impossible to install because of the cement slab. And the price would have been exorbitant. The OT’s report request was denied after a 6 month wait. The reviewer wanted us to get three quotes for a platform lift, even though our OT had explicitly said this was not an option. We carefully resubmitted everything with the help of an advocate, clearly showing why a platform lift would not work, and the original decision was overturned and it was agreed to raise my floor to one level, which was finally completed in October 2018. The NDIA delegate who had approved all this for me, had also given me permission to manage my own home modification payments (so I could engage my builder directly). This in itself caused issues, as the NDIS computer system at the time struggled to give me, a participant, permission to access the necessary funds from my portal (it took many iterations and quite a few weeks before the IT folk sorted that one for me).
The NDIS also funded an AT reclining armchair that supports my shoulders and legs, reducing my pain while resting. Since the purchase of the chair I found that I was able to sleep far more easily in the chair than in our standard bed. I slept in my armchair for over a year. Then in another NDIS plan I requested funding for a bed that would be able to adjust to support me, in a similar way to the armchair. We obtained, at a cost of around as much as the price of the bed itself, OT reports and quotes for an adjustable bed base and mattress that would fit within our existing queen bed frame.
Unfortunately this plan was approved, but the NDIA delegate had changed funding to a king single bed only, one that was too large to fit into our small bedroom. Again the OT had clearly stated that a King Single was not an option because of our bedroom size. The king single would mean I would have to relocate to the other end of my house (furtherest room from the accessible bathroom and away from my partner, where he could not hear me if I called out in the night time.)
The frustration here is that the information that this was a totally unsuitable option was in the OT’s report provided. Further, the decision to go against the advice of the occupational therapist was made without any consultation with me. We had to request a plan review, and fortunately I was able to speak directly to the assigned delegate, who was able to immediately understand the issue, and rectify it, they approved the OT’s request, after ten short minutes of discussion with me.
But why was the OT’s advice and report ignored initially? Surely they are an appointed expert, and their extensive reports should be accepted as such? Why does the NDIA request expert reports and fund them if they are not going to accept them as expert advice and question and deny the recommendations and requests? If I had been able to be in direct contact with the delegate and my OT together as part of my initial planning meeting, instead of just working via the LAC, the whole stressful review process and additional expenses could have been avoided.
As previously mentioned, I’m a respected disability advocate in the Canberra community. My partner is a retired teacher. If we are having difficulties with NDIS policies and processes, I am terrified for folk without our advantages, who are hesitant or who struggle to articulate their needs, or who do not have the resilience necessary to battle against such bureaucratic hurdles.
When the media, and some members of parliament constantly use us a scapegoats and vilify us as frauds and cheats when talking about the NDIS - it severely impacts our health and mental wellbeing. We are living people not just some line on a budget sheet that can simply be cut and discarded.
I beg the Committee not to further this Bill. There needs to be much more disability community discussion and co design involvement in the restructuring of the NDIS legislation. It cannot be rushed through when the necessary alternative community supports and infrastructures are still non existent. If this Bill goes through in its current form it will destroy people’s lives.