Re: NDIS participant experience in rural, regional and remote Australia
Thank you for the opportunity and invitation to provide a submission. I feel honoured that I can provide some insight to help improve the NDIS for all Australians.
Firstly I would like to provide you with some background about me and what I have done and now do, to give some reference as to how my knowledge has helped people navigate the NDIS. I have lived in the New England, NSW region my whole life, while I did not come from a ‘disability background’ like many working in this field, I have a strong understanding of why the NDIS was developed and how it has changed so many lives. I came into the disability sector at the right time with fresh eyes and an open mind. Initially I was employed by St Vincent de Paul in the Local Area Coordination program when the NDIS first rolled out in my area. I was able to see firsthand the rollout and how it impacted many lives. Since my contract ended in the LAC program, I have been working to support people to access the NDIS; this work is done at no cost to clients and I have worked with people in every state and territory of Australia to firstly help them understand the NDIS and then be by their side as they apply.
While doing this role I have met many people who just don’t know the NDIS and what it is able to help with. This is not limited to potential participants but also Doctors, Allied Health professionals and family members. I would like to point out very early that I believe this is a big flaw in the NDIS: the lack of training for health professionals and the seemingly constant changes depending on who people talk to creates a lot of confusion around the NDIS and then in turn makes it hard for people to understand what’s actual fact. Many doctors refer people to me to assist their patients get onto the NDIS; I would say at least 70% of people that doctors refer to me would not be eligible for the NDIS due to them only being diagnoses with diabetes, back pain (with no investigations) or I feel like often the doctors just want to pass them onto someone else. This creates mass confusion when people see their GP and they say to get support through the NDIS, and they trust their doctor, then these people would not be eligible and are left questioning why their doctor would tell them they are. This creates so much confusion and in turn tarnishes the reputation of the NDis. I have seen many times when a Doctor has asked me for help, that due to their lack of genuine understanding of the NDIS, their patient has been left confused with why the NDIS did not accept them.
A local G.P referred one of their patients to me, the Doctor had a chat and explained that they had submitted an access request form for this person and couldn’t understand why the NDIS was rejecting their claim. I met with them to try to help. The Doctor provided me with the ARF that they completed, this person was a below knee amputee and looking to get on the scheme to get some help with mobility mostly.
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read through the ARF with the permission of the patient and Doctor, and no where on the ARF did it say that the patient was an amputee. The Doctor put ‘Diabetes’ as the pimary disability. Yes, the amputation was due to complications from the diabetes, but the Doctor couldn’t understand why they needed to stipulate that their patient was mitting half a leg, he thought that would have been obvious.
This is just one example of a Doctor who doesn’t understand the NDIS or what they require to support their patients to get on the scheme. In a rural area, I have found this is worse as the opportunity to learn about the NDIS comes from a screen, not a real person delivering s \upport or training, where its easier to tick a box and not have to engage with the presentation to actively learn. There is a Doctor shortage in rural and regional Australia, this only makes it worse as they are time poor and unable to understand the criteria of the NDIS a nd no one to easily ask to provide clarity. Many Doctors have reported to me that they will ring the NDIS phone number to be told completely different answers depending on who they g et, so they don’t trust the information. I have built up trust through working closely with many Doctors to help them understand the NDIS and provide an avenue for them to reach out for support in a way that is understanding of their time and capabilities.
My work involves firstly being referred someone, this can be from a GP, family, friend, s elf referral or through national channels such as the Disability Gateway. I do not turn anyone away; there is a ‘no wrong door policy.’ Most people that I get a referral from simply do not u nderstand the NDIS. Whoever is referring the potential participant to me first gets c consent, then I get the referral and reach out to the person (or their parent/support person d epending on their age and disability). I try to meet with everyone face-to-face, but as im l imited by funding, I do a lot of phone and Zoom or Teams meetings. One of my initial objectives is to build trust and understanding of why people need support. I will then go through what they have been diagnosed with, and if they will genuinely meet access to the NDIS based on what I know. Many people are unaware of other supports that they may be able to get, particularly before they apply for the NDIS, so I will help them navigate these op tions. I feel that there is no one else like me in Australia that genuinely understands the NDIS, what people will need and helps to educate treating professionals and the public in a s afe and supported way, at no cost!
Once I have worked out they are ready to apply for the NDIS; that the NDIS will be the best supports for them and they have an understanding of the expectations of the NDIS (this is often that they wont get a new TV or washing machine, but more practical help to be as in dependent as possible), I will work with them and their treating professional to submit an a pplication. Now that things have changed with PACE it looks a little different to what I was d oing. I will assist them to apply whether its through the LAC or EI partner, or via email/mail w ith their application. Depending on the outcome from that first application will depend on what I can do ongoing. I make sure my support doesn’t stop until they are getting the support t hat they need. So if they meet access to the NDIS I will support them (if they wish) for their f irst plan meeting, help explain their first plan, and implementation. If they require further evidence to gain access to the scheme I will work with them and their specialists or GP’s to u understand what the NDIS needs as evidence and gather it with them. If the NDIS decline th eir application I will work with them to understand why and what other supports they are able to access to ensure their needs are met.
A m only one person; I do not have a team behind me to support me, so as you could imagine i am very busy helping people. But I think just knowing that there are people from all over Australia that are reaching out to me, it is obvious that there is a need for what I do.
NDIS participant experience in rural, regional and remote Australia
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the support that I provide. I know what I do would be hard to replicate in an Australian wide approach, but I feel that it is vital to the scheme to implement a service like this as a source of information for everyone. Not just for participants or treating professionals but one place for all information from a real person. This is not something the LAC program can deliver as they are not seen as NDIA, it has to be a dedicated team employed directly from the NDIA to deliver this.
So many people that I have met have anxiety around applying for the NDIS, I don’t feel that is acknowledged at any stage of the application. Its very daunting for people to accept information about help, then there is a stigma around it. There is bad publicity around the NDIS hour stories that don’t do anything to calm people when applying. Pair this own answers causes people to avoid applying, and ‘managing’ on their own, which when they do apply, can hamper their applications because they seem so much more able than what they are. With the “old” 28 page application, I could never understand how people want to apply for the NDIS; these people have diagnosed disabilities, then being told to fill out a 28-page form with zero support. To me thinking seems backwards. The new way involves meeting an LAC – however, this process remains filled with anxiety and lacks adequate support understanding background or assessing its significance in someone’s life. Options need providing individuals whose needs vary greatly.
The approach cannot suit everyone but having assistance similar walking them through processes speaking behalf allows telling whole story without answering questions processing information pace (not complying KPIs), asking questions feeling burden - most importantly acknowledging importance undertaking such step. Many helped required months before considering submitting applications some communicating via post-it notes under front door due inability communicate anxieties fear access system capturing best days failing appreciate build up point These require substantial unavailable currently supporting NDIS applicants.
The program doesn’t possess sufficient personnel accommodate level needed staff turnover daunting those needing trust built time recommending dedicated team focusing participants treating professionals assisting LACs accessing services acknowledges magnitude involvement helping others often worked alongside many resources only few each state really committed building connections health professional participant ensuring comprehension regarding application benefits other avenues available should prove unsuitable introduction happy developing seeing vital scheme fully supports all stages.
Regional location disadvantages allied healthcare availability major cities OT within six weeks regional areas nine eighteen month wait During period plans drastically reduced citing lack assessment justifying funding causing parents quitting work reducing hours caring adult children disability because no alternative exists.
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funding in their plans for their genuine support needs until they can see an OT, which could be years away. When dealing with the NDIA to explain these issues and that they still need unding they are met with an ‘its not our problem’ attitude, so many in regional, rural and emote areas are severely disadvantaged due to lack of allied health professionals that will able to clearly explain their needs to planners to be able to develop a suitable plan that meets their needs adequately.
in many areas, the only way to talk to someone from the NDIA is through the 1800 number, which could get you to anyone in Australia, so when talking to someone they are not going to fully understand the needs or complexities from that specific area or what services are available. The NDIA only has offices in select places, and doesn’t do anywhere near enough ‘outreach’ to regional areas to accommodate the needs of that community or provide clarity on decisions. While the 1800 phone number is good for some enquiries, I know of many tpeople who call it and ask the same question to different people until they get the answer they want, this proves there is no consistency in information that’s being relayed to participants (or the wider community) and because the phone system isn’t linked to an area, The people calling will never actually have an open sit down discussion with the person that’s giving them the information to enable them to understand they needs and reasons for decisions.
in regional, rural and remote areas there is a severe lack of providers, not just for therapies, but even general support workers. I have asked my teenage kids, and some of their friends what they are looking to do when they leave school, and I understand this isn’t necessarily an NDIS issue, but the NDIS can help to resolve it. Many teenage kids don’t even know there are jobs like OT, Speech or support workers unless they have been directly in need of these in their lives. The knowledge around what these jobs are and how to gain a career in them is very limited, I firmly believe that with more education for school leavers about these types of careers there would be a lot more people looking to get into this once the leave school. I feel that this is something the NDIA can support and create good news stories and potentially even scholarships to enable school leavers to start their careers in the disability sector and increase the amount of providers in the field. This would solve many issues including participants choice and control, accessibility, availability and longevity of supports.
While I have so many ideas for the NDIS, I really don’t think they can all be covered in one submission! I would be more than happy to continue to discuss ideas and what I have learned from what I do to help the NDIS become a much smoother ride for many people. I would love the opportunity to be able to work closely with people to implement improvements and design better systems to enable participants (and prospective participants) to feel more supported throughout the process. I strongly believe with better education for professionals, clearer communication and people on the ground to support and guide people in a way that they feel completely heard and supported will improve the NDIS outcomes for many Australians.
i look forward to helping to be part of improving the NDIS for all Australians.
Jen Philp