NDIS review - Getting the NDIS back on track
Hi, I am a 58yo female NDIS participant with a lifelong psychosocial disability. I live on my own in a townhouse and have no informal supports. I don’t use the phone, drive, and rarely leave the house on my own due to my disability. My parents live 90 minutes away and are both in their mid 80’s. Dad (85) has dementia, and Mum (83) has heart problems. I do not consider them informal supports, as its me who should be supporting them at this stage of their life, especially with their health concerns.
I have been watching this NDIS review and am horrified by what is happening. Even my Support Coordinator says I am one of the ones that will fall through the cracks and have no support at all if this review goes through. I’ve attended one Town Hall meeting in person with a support worker, and have attended a few others online. Not once have the review team responded to any of my questions despite telling us all that our questions will be answered. The Townhall meetings are a farce and a publicity stunt. They are certainly not co-design. I’ve also attended a few of the “roundtables”, but the fast pace of them means that I can’t keep up, when I tell them I don’t understand a question they just point me to the legislation as though I am a lawyer and they move ton onto the next question. The fact that there is only one roundtable focusing on each issue means that I haven’t been able to participate in some I would really like to. It’s not very disability friendly.
I’ve just finished the roundtable about psychosocial and registration. was good and read out my comments, which I appreciate (as I don’t talk on the phone) but from the beginning of the meeting I was feeling like providers, parents and “experts” spoke over the participants. It was barely about psychosocial at all, these people had other agendas. The fast pace, the big words, and trying to listen and type at the same time meant that a lot of psychosocial participants wouldn’t have been able to participate and keep up. I know I couldn’t. I left the meeting feeling more scared about the future than ever. One day you should have a meeting that is only for participants, no providers, no advocates, no parents, no experts. Let us speak! And at our pace!
I have tried to read the bill that is being put before parliament, but I’m not really smart enough to follow it all so I will talk to the things that scare me most. I won’t apologise if this doesn’t make sense to you, because you are dealing with people with disability, and it is your job to understand us!! None of you are taking any time to make sure we understand and can cope with what’s happening. It’s all being forced on us at a fast pace. It’s clear that participants understanding or the consent of participants is completely unimportant to Politicians. Its also clear that the review panel has made decisions based on what they want and what is best for themselves, and have thrown others, such as psychosocial participants, under the bus.
It is possible to have a severe psychosocial disability and not engage with mental health supports. The aim of mental health professionals isn’t to trap people into having to use mental health specific supports for their whole life, but to teach people how to manage their illness. Some people with psychosocial disability will always need support, but that doesn’t mean that it HAS to be mental health specific support. If a person knows what works for them they don’t need some paternalistic organisation or person to give them advice, they need to be respected as mature adults.
The examples in the bill that worry me
Item 18 – subsection 21 (2)
Example - Amina
Caterina is a representative for her child, Amena, who lives with Autism and has sensory and cognitive impairment.
Caterina may not understand what is evidence-based best practice for someone in Amena’s situation. As a result some of Amena’s funding is going toward supports that are not effective, preventing Amena from achieving the best outcomes.
After this amendment, Amena would be identified as a participant that would benefit from early intervention as part of her access decision and who could be streamed into a new pathway, when developed so she can get the best evidence-based supports.
The legislative amendments ensure that Amena can be streamed into a new pathway which is designed specifically to support children and their families who would benefit from early intervention to improve lifetime outcomes.
So what you are saying is … the government will decide what treatment we all need. The government will play God in our lives and decide what is best for us. Because we are all too stupid to know what works for us. An example for you … R is an adult and has had years of therapies and treatments and no longer engages with mental health professionals due to the repeated trauma she has been though with them. R is not a risk to anyone, and has never shown signs of violence. Exercise plays an important part in R’s life to help her deal with her psychosocial disability but exercise may not be a chosen by the government as a support, therefore R will lose the funding that supports her to exercise currently.
With the review recommendations and psychosocial participants being “streamed” into psychosocial supports R will be once again forced into using something that doesn’t work for her, and if she doesn’t engage with them then she loses all support. Therefore, R really has no choice in her life at all. R will be completely under government control, as the government decides what’s appropriate support in her life.
Item 25 – Section 27
Example - Kym
Kym applies to the NDIS based on an impairment which results in psychosocial disability.
Kym’s disability is highly episodic in nature, in that its impacts on her life fluctuate from time to time.
There is currently a great deal of ambiguity about how some access criteria should be
applied to Kym’s circumstances.
This new power enables a rule to be made, clarifying how certain NDIS access criteria should be applied to Kym’s unique circumstances.
As a result, Kym and her health professionals have a clearer idea about whether Kym is likely to be eligible to access the NDIS, what information is required to make an access request, and Kym’s access decision is able to be clearly explained to her.
Example using R – R has a psychosocial disability is already on the NDIS but doesn’t use psychosocial supports due to the trauma she has had previously with them. Therefore with everyone being “re- asessed” for the NDIS R is forced to use mental health professionals against her will or R will lose access to the NDIS and have no support. Please don’t suggest “trauma informed” supports, as they are just as bad. R does have a GP that she’s had long term since the start of her mental health problems (over 40 years ago) but the government doesn’t listen to GPs. As R cannot use mental health professionals R loses access to the NDIS and all support.
Example - Ben and Bella
… (cut for brevity)
The Agency begins the eligibility reassessment process, but Frank does not respond. TheAgencyhasnotenoughinformationtocompleteeligibilityreasassessment.UnderthecurrentprovisionsoftheAct,theAgencynmustmakeadecisiononoldinformationfromtheoriginalaccesrequests,andnochangemadesetBenandBella’sparticipantstatusorplans.
Once these amendments are enacted, the Agency can require Frank to provide the requested informationtotheAgencysowitcanmakeadecisionbaseduponupdatedinformation.ThisisalsoensuresthesupportsBenandBellareceivearightfortheircurrentneeds.IfFrankcontinuestondrespond,theCEOmaydecideto revokeBenandBella’s acces after an appropriate opportunity has been provided top Providethe relevant informatio n.
Example using R – As part of R disability she retreats into herself and has problems communicating.Theagencycontactsr via phone(hashappeneddespiteNDIAknowingthatRdoesn’tcommunicateviaphone)andr cannottanswer.Theagencynotesthatr hasn’tansweredthephoneandcuts off her NDIS funding without further contact. True story, the agency twice has contacted me viap hone and when I haven’t been able to answer has just cut off communications.IonlyfoundoutthefirsttimebecausemyGPrangtheNDIFormeafterIdidntheardfromthemformonthsandthesecondtimewhen Ihadputina participantinformat ionaccess form regarding something elseandsaw that they had contacted me.Ihadnoidea!They hadn’ tcontactedmet atallbecausethatdepartmentwasnotallowedt oemail!.AsR’sfundingiscutoffunexpectedlyhersupportworkersnom longer visit, leaving R without support and unable to leave her home or communicate.
Also,does this mean that not engaging with mental health supports means R is automaticallycutof ffromtheNDISAsshehasapsychosocialdisability?Despite the fact that after over 40years of dealingwithherdisablement knows thatmentalhealthspecificsupports nolongerhelpanda reactuallydamagingtoher.
Do you remember David Harris? Like R he was a psychosocial participant who couldn’t answer the phone and retreated into himself, withdrawing from society, at times of crisis and his funding was suddenly cut off meaning he lost all his support, and he died at home alone because of it. It was months before his body was found, his body had decomposed even. That was why the agency brought in the rule about not cutting a persons funding off if they don’t communicate, and now you want to cchange that???? How many people like David and R will die as a result of this decision?
Do you remember Anne Marie Smith? In your example you mentioned people making big withdrawals without invoices, in this scenario it could have been one of Anne Marie Smiths carers who made the withdrawals and didn’t want to contact the NDIS, with Anne Marie Smith not being able to contact the NDIS she would have been cut off. I’m not saying that people should be able to make big withdrawals without receipts … but its not all as black and white as the review team seems to think.
I have some other concerns about the review, but I don’t understand this bill well enough to know if they are included in it or not. So I am just going to write them here.
Navigators
I am not completely against navigators, in fact I was one of the people who suggested someone in that role. However I think they should be used in conjunction WITH support coordinators and plan managers, as part of a team. The reason I say this is that as a person who has no informal supports having only a Navigator gives them way too much power over me. The same as it’s a conflict of interest to have all our supports from one company, it’s a power imbalance to have a government controlled (and we know they will be) Navigator as my only guide & primary support.
I do not think that psychosocial participants should be forced to use a psychosocial navigator. The option should be available for those who choose one, but as someone who has dealt with my psychosocial disability for over 40 years it’s a very offensive to be told that I need someone to advise me on how to deal with my disability.
As someone who has problems dealing with people and communicating, I need my Support Coordinator to deal with day to day problems with my service providers. A Navigator wouldn’t have the time or patience to do this. Basically you are cutting a support that is crucial to me. Also, the navigator will have the power to decide what supports I can or can’t have. If my thoughts on what supports I need are different to the Navigators (eg Navigator wants me to have mental health supports, and I am against them) then who decides whats best for me? Who advocates for me when I can’t? Who will make the important phone calls that my support coordinator currently helps me with? A navigator wont have time to come out to my house and make phone calls with me. Support workers can make some basic phone calls, but they don’t always understand the intricacies of some things.
Plan managers are also essential. Plan Managers stop people from taking advantage of me, and take the pressure off me when it comes to dealing with the financial side of supports. There have been a number of times when I have felt pressured by supports for more money, even though I get my supports through a registered provider. One support cornered me in the car while she was driving me to an appointment, and another had his nose stuck in his calculator for the whole meet and greet to work out how much money he would make from me. These are just 2 examples, I haven’t even
mentioned how the bigger registered providers try to get every cent! I need help so that I am not taken advantage of by supports.
In my scenario the Navigator could be the one I go to if the support coordinator or plan manager is not doing their job, and the Navigator could help me to put a decent support coordinator & plan manager in place and they do the day to day work with the navigator being a backup. They work as a team around me, its not one isolated individual with total control. The navigator gets to know me on a personal level, its not just some random in an office who changes regularly.
To give you a real world example. Currently I have enough funding to support my needs. I also have a support coordinator (unregistered) and a provider (registered). One of my support workers who was doing 6 – 8+ hours a week support (including taking me to visit my parents) quit due to medical reasons 4 months ago. My registered provider hasn’t found a replacement yet, they keep “apologising” but they aren’t putting anyone in her shifts (and they aren’t advertising for a replacement, they’re just waiting for someone suitable to join their company). So I am only getting 4 hours support a week instead of 8 – 10+, and I am not being able to visit my family. My provider is completely ignoring that I don’t get to see my parents. My Support Coordinator has family problems at the moment and is turning a blind eye to my needs for almost a year now. Normally my Support Coordinator is pretty good, and I don’t want to change him because I’ve had so many problems with others. I’m drowning so I contacted my LAC for help but its scary contacting them for help because of the repercussions with the NDIS wanting to take over. The LAC was kind enough to give me some links for other providers, but said I should go to my support coordinator for help.
That could be the role of the Navigator, they could be overseeing my plan and (hopefully) notice that I have a massive underspend of my funding and could reach out and check that I am okay, and help me find a workable solution. Or I could reach out to them when I need help. When your parents are in their mid eighties you can’t just wait until another SW joins a company between visits. Sadly the above scenario happens every time the SW in that position leaves, it always takes months to get a replacement. It happens too regularly for a Navigator to get involved everytime, that’s the job of my provider and support coordinator.
I’ve got funding, and all these people supposed to be helping me but no one is overseeing it to make sure I am actually getting help. I feel more alone than ever. The providers are benefitting from my plan more than I am!
Foundational supports
I’ve talked earlier about how despite having a psychosocial disability I no longer use mental health supports. If it’s a choice between using mental health supports or losing the NDIS then you might as well just take me out and shoot me. That’s how strongly I feel about it. The whole idea of therapy is to teach someone to deal with their symptoms, its not to keep people trapped in the mental health system and dependant on them forever. To quote one of the psychiatrists I saw “if you are still seeing me in 20 years then I haven’t done my job My job is to help you understand yourself and your illness so that you can cope better with the world around you”. I’m not lazy or stupid. I have learnt what works for me, and my GP agrees, so why do I need a mental health person to guide and teach me!
Community connections
I have big concerns about people expecting disabled people to make “connections” in the community and use them as informal supports. To put it bluntly it puts us in danger. We shouldn’t have to make “friends” with people with a view to them supporting us for free. We shouldn’t have to tell neighbours that we are disabled and need help.
In a perfect world neighbours would help, but the world is far from perfect and as we’ve seen with paid providers taking advantage of people with disabilities it would be worse with unpaid people. Will these unpaid people have to be registered? Will they have to undergo police checks? What sort of safety measures would the government be putting in place to protect us from unpaid predators?
As an introverted person who prefers my own company why should I have to make friends just for the purpose of having informal supports? I’m easily pushed around, and can only tolerate people in short bursts.
It’s obvious the review panel are quite confident in speaking up for themselves and are able to deal with lots of people. But not everyone is like that. It’s clear that the decisions of the NDIS review are based around what the review team can and cannot do, and what benefits themselves the most. They haven’t taken the vulnerability of people with no informal supports into account.
Assistive technology
I saw that Assistive technology (AT) is only for mobility. Again, that’s something that helps the review team and not other disabled people. As I don’t use the phone I have assistive technology in the form of an SOS watch to help me contact a monitoring team who will support me to contact 000 if necessary. The watch is purely for emergency use. That wouldn’t be allowed, which means I have no way of contacting 000.
As someone who lives on my own I also have a set of smart devices that monitor my movements each day and alert someone if there’s no movement. Example if I don’t get up in the morning, or if I have a fall/medical event and can’t use my watch. The monitoring team alerts 000 for a welfare check if the alert goes off and they can’t contact me. It’s not a mobility device therefore it wouldn’t be allowed under the new NDIS regime.
All providers being registered
Providers being registered doesn’t do a single thing to keep me safe! In fact, the people who have taken advantage of me most have been registered providers!! Especially when my support coordination was agency managed, and a registered support coordinator could just write themselves
cheques from my funding whenever they wanted with no input from me. They stole most of my money without putting a single support in place! Agency managed funding is a rort!
The registered provider I use for support workers currently is another example. They don’t care if they put supports in or not, its all about who pays the most.
If all providers have to be registered then I will lose both my support coordinator and cleaner, neither of them want to register and both of them do a good job.
I noticed that a few people on the review team were also providers .. again, they did what benefits them most.
Needs Assessments
The recommendation that all NDIS participants have a needs assessment using something that doesn’t even exist yet is like asking people to sign a blank contract. If someone came to you with a blank piece of paper and said “sign this, I’ll fill in the details later” you would laugh in their face and not sign. This recommendation is just so ridiculous.
Final comment
It’s claimed that the purpose of this Bill and the NDIS review is to help return the NDIS to its original intent. The original intent of the NDIS was so that participants could lead “an ordinary life” just like every other Australian. The original intent wasn’t to:-
- Allow government to take control of disabled peoples lives
- Give taxpayers the right to decide how disabled people may live
- put disabled people under the microscope to be examined constantly.
- Make a public spectacle of disabled people via media opinion
- Win votes for ANY politician of ANY party
- Make money for providers
- Have people take advantage of disabled people
- Make disabled people jump through hoops for support
- “Fix” disabled people so that they suddenly magically become societies version of “normal” and get a job.
- Fix the economic crisis (we haven’t even talked about the economic benefits of the NDIS!)
Sadly that’s what the NDIS has become, and if this Bill and the decisions in the NDIS review are allowed to go forth its disabled people who will pay the price. Politicians, media, taxpayers, providers, disability “experts”, advocates, everyone except the people that the NDIS is supposed to help can just walk away. Its disabled people who are and will be paying the price. At times with their lives. But we have no voice.