Jen Philp
BAM Disability Services
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 first hand the roll out 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 on 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. Here is one example:
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 patient 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. I
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 primary 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 missing 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 support 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 and 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 get, 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, self 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 understand the NDIS. Whoever is referring the potential participant to me firstly gets consent, then I get the referral and reach out to the person (or their parent/support person depending on their age and disability). I try to meet with everyone face to face, but as im limited 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 options. 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 safe 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 independent as possible), I will work with them and their treating professional to submit an application. Now that things have changed with PACE it looks a little different to what I was doing. I will assist them to apply, weather its through the LAC or EI partner, or via email/mail with 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 that they need. So if they meet access to the NDIS I will support them (if they wish) for their first 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 understand what the NDIS needs as evidence and gather it with them. If the NDIS decline their application I will work with them to understand why and what other supports they are able to access to ensure their needs are met.
I am 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 and
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 this is acknowledged at any stage of the application. Its very daunting for people to accept that they need help, then there is a stigma around it. There is bad publicity around the NDIS and absolute horror stories that don’t do anything to calm people when applying. Pair this with the unknown and no straight 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 that people would want to apply for the NDIS, these people have a diagnosed disability, then they would be told to fill out a 28 page form, with zero one on one support. To me that thinking is very backwards. With the new way, meeting a LAC, that is so anxiety filled and not having support there to understand their background or how big of a step that may be for them is turning people away. There needs to be various options out there for people as their disabilities are so vastly different.
I do feel that there will be no ‘one size fits all’ approach, but having someone do similar to what I do, walk them through it, be able to speak of their behalf when they cant, allow them to tell their whole story to someone not just answer questions, let them take in the information and process it at their own pace (not have to comply with out of touch KPI’s), be available to ask questions without feeling like a burden, and the biggest part, someone to really see and acknowledge how big it is that they are applying. So many people I have helped, I have had to work with for months before we can even consider applying, there are some that we communicate through post-it notes under their front door because they are not able to communicate due to anxiety. I fear that the new access system to the NDIS will capture many people on their best days and not understand the build up to getting to that point These people will need so much support that just isn’t out there to understand the NDIS and then apply.
The LAC program does not have anywhere near enough people to accommodate this sort of support, and the turn over of staff would be extremely daunting for people who really need time and trust built up. I would be recommending the NDIS look at a small dedicated team where their purpose is to support participants and treating professionals, to work with the LAC’s to apply for the NDIS. For reference, I have been doing this and helping hundreds of people by myself with no resources, it would only need a few people in each state, but really dedicated people to build connections with health professionals and participants to help everyone understand the application process and what the NDIS can do and other avenues to support people if the NDIS is not right for them, not just a number given but an introduction. I would be more than happy to help the NDIA to develop this as I see it as massively important to the scheme and to fully support people at all stages.
Being in regional areas has disadvantaged participants to a wide range of allied health. Some people I work with in major cities (mostly capital cities) can get an OT within 6 weeks, in regional areas, participants are looking at a 9-18 month wait. In this time many plans have been drastically cut, with the reasoning of ‘we don’t have an OT assessment to refer to for the amount of funding needed’ this has caused parents to have to quit working or drastically reduce their work hours to look after their adult children with a disability as there is no
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 funding they are met with an ‘its not our problem’ attitude, so many in regional, rural and remote areas are severely disadvantaged due to lack of allied health professionals that will be 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 people 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.