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Submission SUB-B8P8-003298 (Anonymous)

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10 areas for improvement
How can we empower you through the planning process?

It is disempowering, if I focus on what I need to keep living an ‘ordinary life’ being able to work within what I CAN do - all the focus is on proving everything I cant to show I need support, and if I dont show improvement in areas I will never be able to do its considered not cost effective. I know me and what I need. Why cant I word things my why and SAY what I need without it having to run through OT’s and specialists to reqord things to match NDIA’s language needs. For example - if I use the word ‘anxiety’ it gets seized on as ‘oh thats a mental health condition not oyr problem’.. no I’m autistic and anxiety is huge not because I have an anxiety disorder but because I have emotional regulation issues. I want to not have to have a translator to put things into ‘NDIS speak’. What about people who dont have advocates, good English, and indigenous to translate for them? If someone says they are struggling and their prividers say its related to their disability, why do planners and lac’s get to say ‘no thats not generally part of autism’ - they are not the experts on how your disability presents.
Communication is a major problem. Sonis being dismissed and when I ask for supports that will work best for ME - it is outright dismissed. ‘normally for autism we would consider an OT reasonable and necessary, not a therapist working on these skills using your interest in art’. I have to learn to ask for the right things and THEN exercise choice and control. But if I dont ask for the OT to begin with nothing gets funded.
The ‘how we work out your funding’ process is opaque and feels like a game of chess. Whatever tye internal guidelines are changes too so its different from one planning meeting to another. Eg the current focus on functional capacity assessments and pushback on psychologists. It is beyond stressful not knowing what the current ‘ins’ and ‘outs’ of what the NDIA currently decide is reasonable and necessary. It is so distressing having to sit through 2 hours of ‘how defective I am’ that it takes me days to recover and lots of strategies and supports before during and after to avoid the urge to self harm. It is also beyond distressing to hear constantly or have it inferred at every planning meeting that it is not an unlimited scheme and that I am a drain on society by needing support. I would give ANYTHING not to need supports. I dont like needing people in my home every day to help me. I dont want to rely on people, who let me down or judge me or that I have to train, and its exhausting navigating systems. I dont WANT to need supports, byt I do, and then I need to go through a process of begging and rehashing how disabled I am at each planning meeting. I shut down and cry for hours every time. Then need EXTRA funded supports to try and get back on track for a while afterwards.
How can our most disadvantaged people with disability possibly navigate this without support? Where is the support for people who need access to the scheme but have no funded supports yet - I know of plenty of people who are DEFINITELY eligible and really need NDIS support but have no support to access. PARTICULARLY First Nations people who are already under diagnosed and dismissed. How do they afford the needed evidence in public systems that dismiss their children being non verbal (in an oral culture!) as ‘oh its because theyre aboriginal and their parents dont read to them’ (Yes this has happened).

What is the best way to provide supports for those not in the NDIS?

NOT bllock funding anything like what we had under Disability SA previously ($80000 a year in funding for no services - seriously!!)
But where are the supports in medicare, education, community access? State govts are imposing extra layers of accountability for restrictive practices but anything to do with housing and disability access in education etc - missing. Pushed off onto NDIS.
what happened to all the ILO funding? It went to organisations that were all used to block funding and it didnt deliver any outcomes that made any noticable difference - it just smoothed the transition for organisations.
Yes some supports should be available to all people with disability. Early intervention programs for children should be available to any children showing delays for example. Medicare is inaccessible to people that have disabilities due to high gap payments for example.

How you would define reasonable and necessary?

Well I think in the context of wanting to live an ‘ordinary life’ I would see it as supports that help me to be able to work, shower, eat meals, have friendships and relationships like the average australian my age if they didnt have a disability. But of course I’m not quite ordinary, and the NDIA often disagrees with my interpretation of what I need as disability related needs.
For example YES headphones are an everyday expense. $20 from woollies. But I need noise cancelling ones - not to cancel noise to listen to music like everyone else, but to be able to go into the shops. The noise cancelling function needs to operate without music. In fact they dont need to be headphones that can connect with music at all, its just the noise cancelling. I get so distressed by noise without them that it becomes almost impossible to go into the shop at all. Earmuffs dont work as well - and the alternative is support workers taking me to support me to help me which is more expensive long term but also takes away my independence for something I can do with the help of the noise cancelling headphones, not to mention the extra distress and exhaustion, even with the gelp of a support worker. The cost of the cheapest noise cancelling headphones that actually help my disability issues is $400. So I would consider it reasonable AND necessary that my NDIS plan pays the difference in cost of $380. But my planner said ‘we dont fund headphones they are an everyday expense, everyone has to buy headphones so its not disability related.

What is the best way to support children with disability… and those with emerging developmental concerns?

When my children were young they were referred via CYH to OT group sessions and speech when they werent developing typically. This was enough for one of my children to not need ongoing supports, he is now verbal. The school system is another story - but this worked, it was free, and it helped. Then when my other child was still really needing help we accessed further assistance, (not helpful though through disability services - she was smacked, excluded, not supported, sent to a ‘respite’ house which housed a violent adult where everyone smoked when she was 8 - so please NDIS is a WAY better system even though its broken!).
A key worker works well - someone with experience in child development. Even if a child is not eligible for NDIS - those key early years are vital. Also who says that core supports are not necessary for children - a good support worker under an awesome key worker could work amazingly - plan flexibility for children could work really well. And also higher levels of funding in early years, particularly for developmental disabilities. At present the amounts are tiny for children and everything is ‘parental responsibility’. We also need the NON NDIS participant supports and key workers for all chikdren presenting with delays. Transition times to kindy and to school are also KEY!

How can the market be better designed, structured and supported?

OMG what do we do about independent workers charging full NDIS rates without accountability or skills? I dont know beacause need to still have that flexibility but sheeeeeesh some of them are entitled, and dont deliver value for money, and theres a shortage of GOOD support workers. So many are unskilled, and its a sellers market. Theres not enough. ALSO please help with travel and transport on this! I live literally over the road from an MM5 area but on the edge of a regional town I am MM2. I have been through all tye local support workers bar one and now need to get people to travel. So am burning through my plan. They have a right to charge travel. We need some sort of inventive somehoe for GOOD workers. I keep hearing that people are getting into disability for the money. But they come with a poor attitude. Hey I work in disability myself. But the whole ‘for profit’ issue is a problem.
I’m f particular concern are organisations employing behaviour pracs and therapist and paying them $30 per hour under SCHADS award but charging full rates. What we donabout this I dont know but there has to be more to it thatn making some business owners rich.
I work in the field too - and struggle to make a profit because its not about profit but people to me. How do we get this balance right? In a market where there is genuine choice, genuine people who deliver good service will thrive over dodgy iperators, but at the moment we struggle to attract good people. People dont want to work for an organisation if they can charge $65 themselves and then there is no iversight, supervision, support. I have no answers just questions.

How should outcomes and performance be measured and shared?

They are MY goals what I want to achieve, not an organisations perception of how I SHOULD be tracking. I dont want to be told ‘I’m not progressing on making meals independently’ if thats not something I can do - or of I do that, it means Inhave to choose between that and work. Sometimes my goals are to be supported to do things cos I’m never going to be able to do things the same way as someone without a disability.
Please please please could we share the POSITIVE impact of the NDIS on the economy.
I actually am off DSP - receive no centrelink and pay mor tax than my NDIS plan costs now thanks to assistance from the NDIS. Not directly with work, but with supporting me in my life and to work within my strengths so I can work. And of course thats not possible for everyone. The NDIS helps everyone, our evonomy, our community! But now all we hear is what a drain - particularly my disability - is.
And by the way we KNEW the rates of autism before NDIS was implemented - look at the ABS stats?
What anout improvements in ling term social outcomes?
What about the children on the scheme who wont grow up to abuse their own children and will be contributing to society because they are supported to develop skills and understanding now? What will the NDIS supports do to poverty, rates of drug abuse, alcoholism, mental health long term particularly for ‘hidden disabilities’ - autism, FASD, intellectual disabilities, brain injury?
For all its faults it is making a difference!!!
Disability is everyones business.
Also people have the messaging that it is helping ‘poor dsabled people’ and have a vision of disability still that is about inspiration porn and being totally helpless. (Also an issue for previous question about people working in disability).
Some empowering messaging and societal attitude change would be great.
I probably wouldnt meet the ‘pub test’ now because I work and contribute to the community - so shouldnt ‘need support’ but without support I couldnt - I dont fit the picture of a person in a wheelchair with no capacity to speak and a ‘life not worth living’. Fisabled life is hard but worth it, particularly since NDIS and supports. But then I feel guilty constantly for being a drain. Even though I am not. I give back. But should I only feel ok about myself because I can?
And then my funding might get cut and I end up back on centrelink because I am succeeding in some normal life? Which is the whole point? Argh.

How would you build better outcomes or goals into your plan?

At the moment it doesnr matter as long as theres a goal in there somewhere. Its just a formality. Planning meeting to planning meeting.
I hadnt really thought about it until I read this question. Theres a fear of achieving goals and having funding cut to actually achieve long term goals.
What keeps me from connecting and working on long term goals and using supports for that is mostly that I am using supports to stay within my budget and as productive as possible so as to be able to say I am not a burden. What when I burn out from focussing on work/productiveness? I already went back and asked for more funding. I try and stay as independent as I can, but in only focussing on my self care and daily support needs and work, there is no room for community connection. It feels like a luxury I would be asking too much to have. I would like support for this. And need support but its a lower priority than my daily needs.
I am terrified of ending up alone. If I think about it at this rate in 10 years time I will only have support workers and no friends. My Mum will be dead by then. Gulp. But I cant go back and ask for more help now to prevent that in future. I’m already asking too much of the scheme. I am over 50. What when I’m older? I cant balance, cant navigate steps now.
I have the mindset - trying to work on it - as many disabled women do of only being of value if providing value. But my quailty of life is still poor. I am struggling with this and with justifying what I would need to ask for to change for now, so I dont cost more later!

What does good service from someone helping you navigate the NDIS look like?

A good support coordinator is absolute gold. A good LAC to connect to local services is good too (I have support coordination).
I have been lucky in this.

Again, there need to be enough support coordinators to have a good choice. Not enough around at the moment.

Ndis call centre people dont understand reasonable and necessary or choice and control. LAC’s say ‘we dont fund social workers. We dont fund headphones. We dont fund tablets’. Blanket ‘we dont fund.’ Not true depending on reasonavle and necessary criteria and your disability needs. And LAC’s who dont know NDIA’s own guidelines, or interpret them their own way.
At the moment it seems to all be about dictating particular ine size fits all models. Some plan managers and support coordinators do this too.
Also theres a mive away from the ‘is it readonable and necessary’ checklists for plan managers and needing costly letters.
A good person helping navigate listens to my life my needs my disability presentation and what might work for me. Thinks outside the box on things that might be more effective than just a referral to some generic OT who doesnt mesh with me at all. Could support workers meet that same goal with a DE making some visuals and taking me to an equine program to get far more out of it for what works for me to use my funding and meet my goals. One size does not fit all, and not just any worker or provider is likely to match.

How should housing and living options be improved to build a good life?

This is hard because of legislation - but the rules around SDA are not accessible for most people. Providers have bought and modified houses for people but it doesnt meet the SDA guidelines so they’ve had to rehome. SIL is always geared to multiple people sharing a home and supports - What if I dont want to share with strangers? What if I want to live with a housemate? And what in heck is ILO - who could even possibly begin to figure that out?
Home and luving decisions seem arbitraty, geared towards ‘computer says no’ and glies in the face of all presented evidence.
Who are these faceless bureucrats taking 6 months to look at something and then asking for totally different evidence that theres no money left in my plan to pay to provide?
Hoysing crisis impacts us as vulnerable people more than most. Housing SA has moved nearly everyone who used to be on Cat 1 to Cat 2, and ‘cant provide for disability needs’.
Applying for private rentals - impossible to navigate for many people with disabilities and more likely to be declined.

I am fortunate in stable housing now. But its a nightmare to navigate. Its allnor nothing - you’re eligible for SIL and/or SDA, or you’re own your own with no support at all and ILO doesnt make any sense and isnt in any way helpful or practical.

How should the safeguarding system be improved for a better NDIS?

The commssion cant do anything with untegistered providers. They can strike registered providers off. They can maybe make a phone call to unregistered providers but that is it. There is no disincentive unless its something criminal for unscrupulous providers to behave badly. And even if its criminal or a registered provider - guess who has to provide written proof and evidence and has the onus of providing all of this? I’ve now learned if its not in writing it doesnt exist. My word counts for nothing.

There needs to be adequate regulation of ALL providers - what happens if unregistered providers breach codes of conduct? Nothing. Adult safeguarding cant do much either just refer to the commission.
I dont want to see all providers having to be registered to the level of audit etc that happens for registered providers now or we’ll have no vhoice, but surely some sort of basic registration? If they can get an ABN why cant they be provided to be on some sort of basic provider regustration list, and be kicked off it if they’re fraudulent, abusive etc?

Some of the practices around restrictive practices ARE The restrictions. Some people need medication from their psychiatrist and technically yes restrictive practice. But now DHS in SA has all that info too - without us having any say on this, to put in their 2 cents worth on monitoring the restrictive practices - so more local people with intomate knowledge of our ‘deficits’, and then ‘chemical restraint’ is being reviewed by people who are non meidcal practitioners. Sometimes it might always be necessary. Some things may not be able to be reduced - duty of care for example - extra lovks on seatbelts. We need to think carefully about WHO are overseeing and making these decisions to keep things least restrictive. Our medical practitioners, us, there needs to be oversight but its not cool the way the oversight is being more imposed than the restrictive practices.

Training on providers and a whole shift in understanding from a deficit and medical model might help.