NDIS Bill Concerns

Insufficient time to make a submission.

Many NDIS participants with signiﬁcant physical disabilities have insufficient capacity in their plans to suddenly make time to prepare an adequate submission. In my case I am an incomplete C2 quadriplegic. Although I have regained some functionality I need a lot more assistance than I currently have access to. My best way of written communication is using my phone and typing one ﬁngered on the digital keyboard while my hand is supported on a small table. I am not in the correct physical position and am contravening my surgeon’s orders for head and neck position to accomplish this. I can only work in 15 – 20 minute stretches. It causes hand fatigue meaning I have needed to not do other essential dail tasks like trying to ﬁnd something in the fridge for a meal as I don’t have the physical capacity to safely do that with hand and shoulder and body fatigue. I have never had enough support time in core to help with normal daily personal care tasks – things like written responses need for almost everything is out of the question. Imagine yourselves trying to accomplish your work under those conditions if you had no family or friends support. Physical disabilities often leave the brain perfectly intact however being able to function using those skills becomes almost impossible. I know I spend the majority of every week trapped at home. You might think this sounds perfectly ﬁne but when you can’t physically do most tasks it is trapped at home in isolation struggling to do simple things you have to do to survive. It’s like covid lockdown if someone has taped on oven mitts and tied up your limbs to restrict 80% of your ability to function. That is not a life. Then add deadlines and the need to justify why you can’t function to everyone you see. Your minimum timeline demonstrates how insensitive parliament is and how little they understand the limitations many participants live with. It’s cruel to expect disabled Australians to meet restricted deadlines in all areas without adequately funding their plans to make that possible. It is every citizens right to be able to comment fully. There should have been a way for oral submissions to be taken. You will have missed out on so many valid viewpoints because participants’ just gave up in frustration chalking it up to one more thing we are not allowed to participate in. It is pretty heartless and discriminatory against the most vulnerable voters in the country with the least ability to speak out r let their situations be known.

Deﬁnition of Permanence

Again, your new deﬁnition of that permanent is shows how little you understand the system and the broad range of disability. I want to focus on the ones that take up the most beds in state based rehabilitation centres. Note, these are linked to government hospitals. Most of the beds fall into 3 main categories for long stay. Spinal cord injuries, aquired brain injuries and amputation. Patients are admitted for months. Recovery,

Despite daily therapy, is long and slow and unpredictable. Unless their is full time unpaid family support at home discharge is impossible. It could easily be a year to 18 months before the possibility of recovered function can be clariﬁed exactly. During that time intensive therapy may improve outcomes. You don’t have the capacity to keep patients currently for that period of time. Home modiﬁcations are almost always required. If you follow your current deﬁnition there will be no where for these people to go. If you can’t discharge out of rehab then you can’t admit new people. This will cause bed block into the main hospital setting. That hospital setting is not equipped to care for these individuals. Your health system will collapse. I was caught in the rehab, interim quadriplegic centre as a mid way point ﬁasco in WA. It’s why my plan is totally inadequate. Not only that the mental torture inﬂicted in rehab, in the centre and by the state government when you became ‘inconvenient’ and not good enough to have any quality of life is why I am in the situation I am in today. Everybody alng the way in those facilities sid the NDIS would sort it alll out. In the end the WA ministers decided what I needed with zero science and forced me into this situation where I only have a half life. I have PTSD from this and I had a health background and an intelligent mind, just a body because of a tumor which didn’t operate anymore. You can’t assume every participant is the same. It will never work and it will cost more in the long term. This needs more focus and imput from experts.

Reducing capacity building.

This is completely short sighted. The whole purpose of capacity building is to include or preserve current functioning to save the scheme increasing costs over time. Reduce this access and the entire health system will be burdened by more medical visits. More hospital admissions for participants who will arrive in poorer physical heath needing more intensive treatment over ever exploding timelines. The health system isn’t coping now. It will implode if this goes ahead.

Therapy is not ‘fun’. It is not a ‘social activity’. It usually takes a hue amount of concentration and effort and hors of mundane repetition of pretty basic tasks. Post the actitvity participants are often done for the day. You might o to he gym. I imagine you would shower and change clothes post this activity. If you can’t do this yourself, as I cannot, then you wait till your next shower opportunity which in my case is several days away and i could be hours before your scheduled support worker is next on shift to change. I doubt any of you would think this is acceptable every time you do that activity. I know in my rehab time gains I made that were not determined possible meant thousands of tiny repetitions for something you either learned as a baby or mastered one or two goes. Again, the ministers have almost no understanding of the real world.

My medical reports addresses this issue speciﬁcally. It has been pretty much ignored. I currently have a little of this in my plan but no allocated funding in either core or

Community Access

community access to either travel to therapy or pay for the travel funds you enforce for an allocated for a therapist to visit your residence to undertake that therapy.

Additionally the current system already has predetermined what can be requested in a terapist report. It is never what is actually required but a guess that is not standardised across the board or matched to a condition. That is discriminatory and plain stupid and short sighted. Plus, for the NDIS, it has to be requested by a therapist you approve of, ot experts in the ﬁeld. You demand reports requesting various items but the experts in the ﬁelds won’t write reports for the NDIS because the parameters are unclear for the reports and the NDIA has argued the validity of the therapy requests as it doesn’t meet what a planner with zero understanding or professional knowledge ‘expects’. I have been in this position constantly. These requested reports funded by the plan are disregarded despite being conducted by experts as it is deemed ‘couldn’t possibly be the case’. It is insulting to our intelligence and their expertise. It’s no wonder mainstream medicine wants nothing to do with the NDIS. Despite all this nonsense you want to reduce it even further. Severely reducing therapy as you want to do will drive down functional capacity results meaning more care required year on year which is the exact opposite of your end intentions.

If this was your child, your sister or brother or wife or relative you would want choice and the best options. Not something a planner with no expertise deems is right.

It might look expensive in the short term but not engaging in it means costs you can’t imagine in the future.

If I had followed those medical staff at state based rehabilitation I would be totally wheelchair bound with next to no function and probably a workable plan. By putting my ife totally on hold. No friends or activities I regained some usable function but I have been penalised every step of the way for it by ignorant uninformed planners in the NDIS.

Functional Capacity Assessments

I might beneﬁt from this with increased hours IF your new system functions as promised. I have little hope foor elief it will tough because it is already ﬂawed. I have grave concerns about the process. The current system is not working. It relies on the OT to be skilled enough to accurately complete the assessment. Although funded in my plan there is insufficient hours to complete it properly. A half way report, deemed perfection by the therapist always, results in a plan not suitable to the particiant. Your non success at ART should tell you this. It causes immense frustration, anguish und effort too correct. Beyond most well individuals let alone the disabled. Check out the number of courses advertised to OT’s to increase their skills in this area starting with ‘having problems doing the FCA, come to us and we will teach you what to do’ Any system that relies on these reports as gospel truth and then has multiple courses for the professionals to improve their skils is broken. Participants pay for this inadequate and

very costly report in poor plans. Nowhere in the system is a way of measuring the accuracy of these reports treated as perfect captures of the actual impairment. It is totally broken. Then your planners don’t accept every report of it doesn’t meet what they want. No one truly knows what is required. It is all educated guesswork. You

can’t only rely something that might be 70%accuracyourNot only that reports, have to be written in the NDIA approved language, not properly speciﬁed anywhere, and listing only those items deemed allowed by the NDIA. That is another mystery. It is far from standardised. There is not enough time for the OT to properly observe functional deﬁcits. They ‘guess’ if you don’t ﬁt in a standard box and get it wrong all the time. More time is spent in writing and a ridiculously short time in proper assessment. However, the disabled community is measured against those errors in reporting. It is no wonder those with multiple issues or rarer presentations are successful in appeals where proper scrutiny takes place. The public would be appalled by these circumstances. The new system proposed doesn’t appear to address any f these current ﬂaws. It will still be ﬂawed just with a different outcome.

Community Access.

All of my allocated funding in this area is used for medical visits and scans directly related to my disability as well as attending periodic physiotherapy to help maintain function. Occasionally I can add on an hour of grocery shopping to one of these outings. I also attend the hairdresser regularly because hair touching my ears causes nerve pain directly related to my spinal cord injury. I attend some school career nights per year to provide advice to high school students for university options (I have t0 cancel attendece for soome every ear due to funding shortfalls. This is the only thing left from my previous life before my diagnosis in December 2016. None of these activities meet the universal accepted deﬁnition of ‘connection to community or family or friends’.

I no longer have any social activities or connections with family or friends. That doesn’t ﬁt into my NDIS Plan and never has. Every rehab manual you read stresses how important it is to reconnect with the world post injury. I have not been able to do this. I spend my week inside, alone, pretending I don’t exist. You have no way of understanding the toll this takes. I no longer fell comfortable outside the home. It’s an alien world I can only access with help. Reducing these limited hours, will mean even less will be possible.

I am not alone in being in this position.

I already require up to 40% of my community social hours for home personal care activities because my core funding is insufficient. For example my care plan prepared prior to discharge by a registered nurse included the following activities in a 15’ to 20 minute morning timeslot at lunchtime. It was post shower which was observed and

correctly documented for time.
Put used towels in washing machine and turn on, wash and care for rigid neck collar required to be worn in the shower, clean bathroom post shower (for safety so no slip hazards so wiping ﬂoors and cleaning up carers messes), prepare breakfast, prepare lunch and clean up after both plus light cleaning. Evidently no eating was allowed and I have a swallowing deﬁcit relate to the spinal cord damage due to the tumor and surgery to partially excise. It wasn’t observed because I didn’t have a place to go to yet ad was in residential care with all meals supplied. Not once in over 8 years have I had breakfast in the morning, Many days I do without lunch. Dinner preparation was never in the plan. It was a fantasy made up to look as those care provided with the government time allocated by some government minister. I rely on the few hours not utilized mostly for medical and therapy just to survive. If this is cut I have nothing else to give up. To make my hours work I now only shower twice a week. The shift. I only have help with one meal 4evenings a week. For the rest I live on toast, cheese, crackers, soft drinks and hopefully some leftovers. There are many days I am not safe or cannot get items in and out of the microwave. Like this week when I have been trying to write to you. The general public you keep referring to would unlikely consider this adequate care. The NDIS was designed for people like myself. The new periodic funding restrictions will mean I won’t be able to adjust the hours to ﬁt the requirements during the early months of a plan in fear of vital activates not being possible.. then if you don’t allow funds to roll over you are punished by losing them. Is your week exactly the same every week f the year. You know it isn’t. Why do you expect the most vulnerable and thus unpredicable to be regimented and completely inﬂexible. It’s totally insensitive. Because I have run out of funds before, due to a completely inadequate plan, I no longer take my medication as I ordered every day. I ration it to insure I won’t run out if at the end of the plan I cannot get to the doctor. My GP wrote to the NDIS the last times this happend but it was not taken any notice of 0or read. Because that has happened before he didn’t want it happening again. This includes not taking my pain medication which affects my ability to function severely. It completely contravenes prescribing practice. The pharmacy was rightly concerned about withdrawal symptoms when they could not ﬁll my webster packs due to no script. What is totally ludicrous is your system fuels my need too see the GP so much. Your restrictions on proscribing section 8 pain relief means I have to see the GP every 28 days just for the script and I have to attend in perw8n. That is because I take a different strength sustained release during the day and night. If I needed to return to taking the day dose at night time I would need to go every 14 days. (That in itself is wasteful of Medicare funding as well as my NDIS funding). The dose h as not altered in more than 8 years. It is ludicrously difficult especially as this regime is ordered by a pain specialist who monitors it twice a year to protect my GP and his practice from government scrutiny. II is the best option fpr my condition.

It is important to note those with significant physical disabilities take longer just to do the transfer process in and out of a vehicle and into any venue. Your proposed 50% cut treats mobility as a normal person not a disabled person. That is discrimination based on disability not enabling access.

You propose funding community social programs for disabled people to engage in with no indication of what those might be. It won’t be possible for people like me to even consider these if your savage cuts to community access occur as I need a support worker to access the community. Have you given any consideration to that?

Review limitations.

These need to remain for those with rarer and severe physical presentations. Most of the problem stems from the system failing the participants and by removing the Review mechanism you further condemn them to isolation and inadequate care and abuse through neglect of provided services. There will be adverse outcomes that will enrage the public, as well as most that will be invisible. In what other area of life is there no opportunity to challenge a decision or have it reviewed. Nobody is infallible especially government departments. This is outrageous that you think you an inflict this on disabled individuals becausey ou believe they won’t have a public voice. You are not infallible and a god above all others. You have no right to assume those characterists.

A brief glimpse into my journey and concerns about the massive NDIS reforms proposed in the current bill.

Reforms are certainly needed. There are multiple ways your policy could be updated to save money on everyday requirements and reduce fraud.

Fraud needs to be addressed. There is no doubt about that. This bill though not only don’t address the fraud properly it defrauds the public who don’t understand the complexities of the NDIS system or language into believing you are doing that. This is unforgivable. It is essentially lying to the general public and trying to convince them you are crrying out their wishes.

You never know what tomorrow will bring to your lives. You can’t choose to have a perfect child, you can’t choose not to have an unforeseen medical condition.

The world does not work that way. If it did it would contravene any human rights and allow governments to determine who is allowed to be part of society. Has nothing been learned from the Nazi approach to those deemed worthless to society? At least, as despicable as it was, the end came relatively swiftly for those deemed disabled and no longer worthwhile to society. Your currently tables ‘improvements and rationalisations’ will condem those with significant physical disabilities to a slow and emotionally painful demise. They will be isolated at home, not seem by

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the community and forgotten about. They will have inadequate care which leads to more rapid decline and be cut off from the community. You have arbitrarily decided to treat everyone the same. That is unbelievably naive. You have decided by doing so to punish those the system was designed for the most. There is no justiﬁcation for this. If the general public understood the nature of these effects they would be outraged but you have chosen to blur the entire situation by having NDIA use language that isn’t easy to understand by participants and misrepresents the true situation to the Australian public.

During my rare ventures outside of the home the general public has no problem identifying I need extra help because of my physical challenges. I don’t understand why the approved NDIA government bodies, therapists, planners or system is incapable of doing the same. Just because some of us have bodies that are now physically challenged does not mean our brains don’t work and yet your system treats us like 2 year old with no brain. It contravenes our human rights most days.

My situation falls into this realm already. I don’t know how I can survive with up to 50% cuts.

I am classiﬁed as a C2 incomplete quadriplegic. I have a tumor in my spinal cord. My medical team understands the challenges this means for everything I need to do physically. I have no family in this country. My dad is 96. My mother fell and was on home hospice and died earlier this year in the USA. Although cleared for international travel with the requirements of signiﬁcant assistance I could not go home to say goodbye in person. I cannot function most of the week, travel anywhere is now impossible. The general public is not physically prevented from having a night away from home. Why am I? Many disabled people travel. I don’t know how. I have no funding for normal functions at home. Even one night away is impossible. Can you even begin to imagine how all of that negatively affects ones mental health. NDIA has never properly taken this into account.

I am very grateful I can be in a home environment supported by the NDIS, however I don’t have any normal life anymore. Living in residential care where you were the odd one out and misunderstood was torture. I now pray every night the Lord will call me home and allow me to not wake up because it would be easier for me and everyone else. That is solely die to lack of care and isolation and inﬂicted loss of self worth. I am constantly exhausted and unable to live anything close to a normal life. That contravenes what would be classiﬁed as expected normal human rights in a country like Australia. My plan is underfunded by a signiﬁcant amount. It cannot endure any further cuts. Because I have run our of funding before and was treated so badly by the

NDIA phone support I don’t want to be in a position where they can verbally abuse me again. I spend most of my week inside pretending I don’t exist. I have restructured my hours to try and sustain my life. I only shower twice a week. I only have help with meals 4 times a week. I never see friends. I don’t do anything for my emotional well-being inside or outside of my home. I had to sell my fully funded house and buy something accessible because I had home modiﬁcations listed in my plan but no funding for a lot of time to execute that. Home modiﬁcations would help in my new place but your system makes it impossible to navigate. I was discharged on orders of the WA state government from the quadriplegic centre with an inadequate funding package and promised the NDIS would sort it out once on the scheme. That has not happened. I don’t sleep well because I don’t have the help I require at bedtime so my head and neck are not on the pillow ever. I have to wear neck support 24/7 but orthotics are not in my plan. I am at substantial risk for falls due to my disability but to make my funding work can’t have care every day. My shoulders are severely affected so arm function is very limited. I have almost no ability to look up or turn my head. I type on my phone one finger at a time with phone and hand supported by the table. Every task I can attempt is compromised in some way and takes 4 to 6 times longer than a normal person IF and most is beyond my recovered ability and so the majority of normally accepted functioning is beyond me. I am never dressed anymore. I live in my nightgown which is only changed when I shower or if I go to an appointment. I expect you don’t go to work in your nightwear or bed in your work attire and I assume you shower appropriately. You are lucky today but what will tomorrow bring your way? I can’t shower or change myself and mostly go without. That’s neglect. My care company is excellent. They continued restricted care gratis when my plan last time ran out of core funds. I don’t want to be in that position again. They want to provide more care but my plan doesn’t allow it…. I can’t take all of my pain medication as ordered. I skip doses every week so that if unseen issues arise and I don’t have funding to go to the doctor to get the script as has happened in previous years I won’t actually run out. My medication isn’t designed to be abused that way. It means the difference between being able to make toast and butter it and put the plate in the dishwasher maybe with a slice of presliced cheese or not being able to do it all. I can never have a hot drink or many other options because I cannot ransfer the cup to the table. I live on water and soda as I can usually open with my assistive device and use a straw as these can be transfer unopened to my table. I cannot afford to risk spilling a liquid as I can’t clean it up and it is hours or days toll help arrives during which time to clean up a mess I unintentionally made means giving up some other vital self care activity. No one sees these sacriﬁces or troubles or cares or can imagine what impact that has in a negative way on your life.

I would apply for change of circumstances but getting reports for items ordered by your doctor like my orthotics not currently in my plan is hard as your reporting requirements are so arduous.

Every therapist I see complains support coordinators are mostly ineffective. I you are lucky too get a good one don’t lose them but most ineffective. That is my journey. The last time ( needed to speak with a planner I was abused for needing personal care. They refused to wait for the FCA I had a copy of because although I followed their instructions to email it your system is not instant and I was abused for not knowing how to email. It was insulting. It was not used. Doubly insulting. They are only valid for a year. Stupid when conditions are unchanged. Lastly I was abused because she could not instantly contact my support coordinator. No one knew when that call was going to be made. Of course I didn’t have that ﬁrms roster of availability and it turned out they were on holiday. It destroyed that relationship because pf the number of abusive calls they received. Unforgivable from an agency holding your life in their hands and I have heard numerous horror stories since.

I still have no idea what the LAC, local area coordinator, is good for. That seems a money waster. Either they have been totally ineffective in the early days saying sorry, you had a good case but we could not ﬁx your plan to initially asking many questions in the beginning and lying to me carbon copying my government inadequate plan as directed. Now I am summoned to the office. They can answer none of my questions about how the system works and how to ﬁx or sort out my situation. The give childish shallow answers with zero understanding of the system. A complete waste of resources.

Being in this situation with an unaffected brain is confronting and exhausting. I cannot control the stupidity of the system I am forced to live in. Social isolation in a covid quarantine environment for the majority of every week has severely affected my mental well-being. It would improve with any semblance of outside social interactions.

My care providers team have the ability to engage with twice monthly fun social activities for their mental health. My few carers cannot understand why I am more physically disabled than most of the people they care for but those people leave the home for fun social activities weekly but I cannot. It depresses and concerns them. My ﬁrst care company, which handled many spinal cord clients, constantly sent inexperienced health care students. That was a disaster. I was forced to change providers because my plan didn’t provide the hours required for adequate care. They could not ﬁll my shifts because their employees wanted and demanded more hours per shift. Because of my background in health my team would constantly ask questions about how to handle situations which I secretly felt left clients in dangerous circumstances. I had several excellent support workers who were handling other spinal cord clients. I knew some of them from my journey through rehab and residential care. The could not understand how my plan was so much less when my needs were equal

or ore and some of those people. In multiple instances those clients had 2:1mprning care and or more hours and this allowed them to provide breakfast and lunch assistance. Those clients also had spouses whereas I had no one to help hnd they never had to make choices as I did. In my search for a new provider all the main ones servicing participants like myself could not add me to their list unless I had minimum 4 hour shifts. I could not provide this so I was not a suitable match. Wy new provider is excellent. The support workers are far more carefully screened, chosen and matched. Regardless it is never ok to have to choose every day between having a shower and dress and feel human or save help with a meal or give up both to allow medical appointments. That should never be ok. I know I am not alone in having this problem. I have enough challenges to qualify for SIL or SDA if I didn’t have my own home. If placed there my costs to the government would be 3 times or more per year. Those circumstances should be taken into account but they are not. My woman’s group, who I can never see anymore, have younger relatives, often with substantial psychosocial disabilities, who have many more hours than I do and they can shower, dress and mobilize without assistance. Thee is no doubt those people need to assistance they receive the better question is how to even up the access for those with conditions not well understood by the planners. Your proposed reforms will not address that.

The NDIA currently prides itself on meeting reasonable and necessary supports but too many people like myself that don’t ﬁt into a known box fall through the cracks with little ability to improve the situation.

Finally, much more consultation needs to be made with with all the focus groups to better address the reform required with penalising those with signiﬁcant physical disabilities the scheme was originally designed for prior to ﬁnalising these new changes.

mean our brains don’t work and yet your system treats us like 2 year old with no brain. It contravenes our human rights most days.