As part of delivering the largest Disability and NDIS events Nationally, Developing Australian Communities is asking tens of thousands of visitors and service providers what they think needs to be changed and included in the NDIS review being lead by panel co-chairs Professor Bruce Bonyhady AM and Ms Lisa Paul AO PSM.
“We decided to conduct our own research recently and asked people what they think about the NDIS review, what needs to be changed and fast to respond to the needs of the 4.4 Million Australians living with disability and the over half a million accessing the NDIS. When speaking with respondents to our research survey most explain that with years of delivery the problems are clear, constant, repetitive and very obvious”, said Cofounder and Leading National Disability Sector Advocate, Mr River Night of Developing Australian Communities.
“Our research survey went out to the sector as part of the 2023 Sydney Disability Connection Expo at the International Convention Centre in Sydney last month, who also released their inclusive event tool kit coinciding with the largest 2 day event in NSW for the Disability and NDIS space.
“We asked almost 5000 people what does the NDIS review need to look at and what is your experience. Respondents were often saying the same thing and were clear about what they thought is broken with the NDIS and needs urgent attention. While the NDIS has done great things the impact on some people due to what needs fixing is too great at times and unsustainable. We dont want to take away from the amazing work done by NDIS and it’s positive impact but we also cant tolerate the negative impact described by those affected when things go wrong. We also interviewed the CEO’s and Directors of some of Australia’s leading providers about their thoughts on what must be addressed as part of the review. We applaud the work being done by Mr Shorten and his commitment to fixing the NDIS and we were honoured to have MP Liesl Tesch, Parliamentary Secretary for Families and Communities and for Disability Inclusion open our huge event in Sydney recently.
We urge all Australian’s to join and contribute to the review https://www.ndisreview.gov.au/
Below are the quotes and voices from some of Australia’s leading CEO’s and Directors in the Disability and NDIS Sector as part of our recent research.
“We recently had to cease providing services to a participant needing 24 hour, high intensity care, for no other reason than NDIS botched their funding and could not return our call to do a quick and easy plan review and update for a long term NDIS participant that has easily evidenced support needs. Even though it was a straight forward case where NDIS made a simple mistake they could fix in under an hour, not one NDIS delegate could simply pick up the phone and action a simple solution. Instead we have been forced to deliver over $50 000 in unfunded support services and then had to stop because we couldn’t carry the NDIS debt any longer when they were not responding to our escalation and urgent plea. Despite escalating this in writing for over 5 weeks, identifying the problem almost 12 months ago to avoid it, calls made by us, the support coordinator and the Guardian, the response from NDIS was nothing. For controversial matters and issues that are complex we understand it takes time but for an established case with no question or controversy that NDIS could fix in a matter of an hour we saw zero response. What’s worse it has happen to this participant every year for the past 3 years. Even our emails to the current Minister, provider support, registered payment enquiries on the portal are all still ignored. When a service provider cant contact and resolve a critical matter that results in a loss of service and major impact on a person living with a disability and they can’t even talk to someone to have this resolved in under 5 weeks it is abhorrent. How dare an agency with almost 30 Billion Dollars say to a participant, their family and service providers the agency made a mistake, they know it, they can solve it quickly and easily but they won’t because they are too busy to return a call or email for over 5 weeks, so can all the established staff and support team and service just not asked to be paid or funded for a few months for no other reason than, we are a bit busy. We are an essential service and the participants we support cannot be supported in hospital settings easily. It is disrespectful to the most vulnerable members of Australia and unprofessional. People have a right to receive appropriate services and we demand that issues that create real risk in people’s lives be addressed with the level of priority they deserve. More than 5 weeks to fix simple problems that result in catastrophic failure in supports for a person with complex needs should be criminal. Imagine saying to our nurses, police and NDIS agency staff, sorry you wont be paid for the next 6 weeks because we are a bit busy. For some participants they just seem to have a really rough process and treatment. The real disappointment is it is avoidable but we see it every single year”, said Operations Manager, Fran Cloney of Australian Communities.
“The common feedback I get from the thousands of participants, people applying and service providers around Australia I have contact with is time waist, confusion with unnecessary complexity, inconsistent decision making but also a need to ensure we steer away from standardised tick and flick decision frameworks and ensure it is based on professional knowledge, judgement and evidence. I am told that the response from the Agency to consistency in decision making is to prefer to give unqualified, inexperienced planners guides that tell them if a participant fits in this box then they need ‘this’ regardless of the professional input of the stakeholders and professional reports provided by licensed professionals. Too often I hear “did they not read anything?”. Decision flow charts and regimented profiles that say if you fit “this” profile it means you need “this” is the opposite of the individual, person centred nature of disability support planning and funding. Providers and participants alike tell me they prefer a planner that meets them face to face, understands because they are a professional with experience and uses the evidence and recommendations provided from the professional and stakeholders in the persons life. We applaud the idea that Mr Shorten raised this month to say the call centre needs to be internal, staffed by people that can access your information, provide solutions, respond and reduce the time wasted treading water because people are and will drown. If the call centre only regurgitates the information from the website that doesn’t help me when I can read it myself. When my call is to say to the NDIS that the delegate has made a huge mistake, I need this fixed urgently – ‘take a number and wait a month or four’ is unacceptable and means for many, risk of homelessness, risk of service access issues, risk of hospitalisation, risk of abuse and neglect, said Mr River Night Cofounder and Director of Developing Australian Communities, National Systemic Advocate in Australia, Carer and Person Living with Disability. “As far as the NDIS is concerned, it is basically time that is very, very valuable. When we ring NDIS, for any query, it takes a long time, and most of the time, they say, look, you sent us an email, and we will respond within two to three weeks time. Two to three weeks time means it’s nothing, you know, we are nowhere, we need to address those participants because some of them they are sitting in hospital and they are occupying the beds, and the hospital staff, they are struggling and it disturbs the whole system.If you wait for three weeks, and then other allied health people, for example, they are on long waiting list also. Sometimes it takes six months for appointments with allied health people. It takes us a long time to get the budget approved. The participant budget, if the budget is not approved, they are sitting in hospital or in a nursing home or retirement village. So it doesn’t take anyone anywhere. Then the support coordinators, basically they need more and more training. There are a lot of good, very, very good support coordinators in the market, but some new ones, they don’t know how to approach the NDIS and how to submit the documentation. The documentation is very, very important when they approve the budget, because if there’s one document short, then it is sitting there waiting and that knowledge and training needs to be there for Support Coordinators. People basically suffer, they suffer, they don’t get anywhere. The houses are ready to move in. But we are waiting for the paperwork. They need to put some more effort into speeding up the process. The process is very slow at the moment, said Mr Muhammad Latif, Director, Cocoon SDA Care “The changes we do require and I think need to be looked at in the NDIS review, are timelines. People have to wait for 30 days to 60 days to get the plan approved. That’s not a good process to start with. Another thing as well, the NDIS needs to recruit more people in the complex area. The participants with complex needs are not getting served properly. They need more people in the areas of complex cases and they need more complex planners throughout the NDIS. Another thing as well, the planners need more training in how to interact with the participants. I’ll tell you a recent story – we were having a review for one of our participants, and a planner laughed at her disability and the planner laughed about “What did she do in her free time or was she doing community participation?” That’s not a good thing to do. So the NDIS as a whole thing needs to be looked at again and it needs to be regulated properly, said Jay Singh, Founder/Director, Easy Healthcare “In terms of the complex home modifications, what we’re starting to see nationally is a direct impact where we’re finding the responses back, internally back to the occupational therapist, there seems to be limited assessment for review of the information. So I’m seeing a trait within there, which we see across the board, as from an auditing point of view, that maybe the people within there are not necessarily as skilled and competent as the people running and they’re not taking it on value. The issue lies in that the OTs and the providers have a direct relationship, and they have a connection to that participant, a person that’s working just inside a building 60 levels up, doesn’t understand. They’re not mindful to understand what is required. They’re pushing it back just on a tick and flick application, and that can’t be done. That’s just delaying it. It’s causing anxiety, it’s causing frustration. It’s also causing some reputational issues back to the provider, that the participants, in their view, are questioning whether or not the provider and the OT’s are competent, and whether or not they’ve made the mistakes based on that information coming back from the NDIA in their responses. I think that’s unfair and unjust. That’s also what we’re seeing out there in the marketplace, as building consultants that provide clients are going to potentially other clinical experts thinking that it is their fault when it is not. It’s just the information is not being digested appropriately, the right questions not being asked. In some cases we’ve seen where they’re actually responding back and questioning the report. The information they’re questioning doesn’t even exist in the report. So what have they reviewed? Or is it just a cut and paste response that we normally expect from a process or a red tape process that deny it first off, and let them come back and justify it and see if they go away, saves us money, or let’s just prolong it, because then we can concentrate on these other applications because we’re too busy internally, ourselves, by the way, it’s not acceptable, said Marcus Pavlakis, Founder (also an International Certifications Auditor), PNP Constructions.
“The other thing, from a building point of view we want to see and change is that no builder, complex home modification builder, should be doing home modifications, unless they are registered, third party audited, certified, hold the highest level of qualifications. In terms of the actual funding, it should be all agency managed, it’s too much money being managed and controlled by participants or plan managers. It’s a substantial amount, and all the money should be retained within the NDIA because as a business, I understand our obligations and responsibilities to the NDIA under the acts and legislation. If I misappropriate any of those funds as a complex home modification builder, then I answer to the federal government. Those consequences are very severe, both as a provider being stricken off, or in terms of misappropriation of the funds, I would deal with the Federal Police. That’s the level it needs to be, not this situation where a person gets to utilise big package money and items have been done or works been done by unskilled and unqualified people, where then there’s issues in terms of rectification and defects. Under the Act, the NDIS will not fund repairs, they will not fund a defect. So if you’ve had the complex home modification done by a local builder, or by a person that you originally trusted, and now it’s defected, you will bear that yourself, but with us entering to the NDIA directly in terms of the home modification, we would answer to them through the fair trade. That’s the what the process should be, the way I see it, said Marcus Pavlakis, Founder (also an International Certifications Auditor), PNP Constructions “Our major services are Supported Independent Living, supported accommodations. There are providers in the market who are providing, you know, tailor-based services and I’m very glad to say that PIYC is one of those providers, where we go by individual needs, but the thing is, from NDIS, the challenge we always see is that they don’t have, tailor based plans. Each and every individual participant needs to have a plan and funding as per their needs because we have seen they become a victim of this by the agency just giving a plan without actually seeing what their needs are, especially with the SIL accommodation. So with this funding, participants are shopping around looking for houses and vacancies, and do not have clarity from NDIS what actually they’re funded for, they just go blank, like, oh, there’s a house, there’s a granny flat available, there’s a room available, and I liked the house, and then without knowing that what they are funded for, so I think these needs at a very initial stage, when they’re doing pre planning meetings or first plan, second plans, need to be identified. Then they need to be given a tailor base plan. While I do acknowledge that this is not a small scheme, it’s very diverse and, you know, intensive scheme, maybe not always possible, because governments have limited resources. They should have those type of plans where the individual needs are catered for, and then they should have the right funding in the plans, because what happens is, most of the times our support coordinators are now struggling, as soon as the NDIS give a plan. It’s like, I’ve got a new plan, but I don’t have the funding for the support I need, let’s go for a plan review. Let’s go for unscheduled plan review requests that may take a long time, because there’s a long waiting list, everyone is applying for plan reviews. What is the purpose of a plan review when you are not going to cater to their needs? So those planning meetings need to be done in a more structured way, where all the stakeholders are invited, those that have a say in the person with disability’s life and can contribute to a great plan. The NDIS participant in their life, they should be part of these planning meetings, and then you need to carefully consider what services and what support they need and then their plans and funding should be aligned with their needs. They can then avoid going for plan reviews. One good thing they introduced are the longer plans. You know, I’ve seen in those last six, seven years that there used to be a 12 month plan, but now there are three year plans as well. But I know NDIS introduced this so that those individuals that have very stable and neutral needs don’t need 12 months, and can go for a longer plans. It’s less resources to get they have to utilize in this, but the gap is with these longer plans, they go for unscheduled plan reviews very quick, because their three years of needs are not catered for in those in those planning meetings. I think that’s one take from us they can consider in future, said Jeet Singh, Director/Partner, Partner In Your Care.
“Only two things. One, NDIS need to clarify, refine a little more about choice and control. I think choice and control is so broad. People who have disability, the participant themselves or a provider, they stay in that gray area – what is choice and control? Because when you say choice and control, then NDIS come back and say reasonable and necessary. All those terms, I think they could be a little more refined for people who want to provide the right service or a participant who wants to receive the right service so they know what the choice and controls are. So all those regulations, all those sections, can be clearly defined for the participant and for the provider. Second, the reasonable necessities. So NDIS talk about: we will give you the funding after the incident. Give me the evidence that you need that funding, they do not give you the funding on the probability or the risk. They will tell you, hey, this client needs this much funding. They say Where is the evidence? There is no evidence we are working on for early warning signs. There is a potential of them having a fall, but NDIS says once they have a fall will give you the money. That’s wrong. I think this is putting a client in danger. Early prevention schemes, early prevention funding can help. I think these are the two things I would like to make a note of, said Lokesh Garg, Director/Founder, Partner In Your Care. “Basically, it’s not very direct, they don’t tell you what exactly you need to get done. So you have to attempt three, four or five times and get rejected every single time. They [the Agency] still don’t tell you what you need. It’s luck, who you fall upon that tells you what kind of documentation you need. Things like that, which is not very direct for a participant, majority of the support coordinators and providers don’t even know what to provide. So for the participant, it is very, very difficult. I’ve had a lot of people come to me here and previously saying that they want a review. But they don’t know what to do, or someone puts a review for them. But it got rejected when it shouldn’t have been because it was so straightforward. All they needed was basic paperwork to get done. There’s a lot of miscommunication with it. And they’re very unfair in that sense, as well, where people that genuinely need that extra support, they don’t approve, which is honestly very unfair. So providers like ourselves, we go above and beyond, and we’re at a loss to be able to help them with that additional thing they need. Where a lot of providers don’t even provide that service, which isn’t fair on the provider either where they should be obviously able to comfortably pay their workers for what they’re doing. Like us alone, we’ve got workers going in WA, I’ve got a worker that’s working with a participant and NDIS didn’t approve her two to one funding, but she’s a two-person participant that needs to be carried into bed, and they didn’t approve it. So we’ve got a worker that goes we pay them to do it ourselves, but we’re not getting paid from NDIS for it. So we’ve got a lot of things like that, which is not easy on the participants because a lot of providers won’t do that. So it is very difficult for them. That’s an example, said Nesrin Tanlasi, Managing Director, Reaching Abilities. “We have a lot of people that come with significant disabilities who have no idea or are completely overwhelmed with the process of accessing the NDIS. So how do you get someone who actually doesn’t know the system, doesn’t know how it works, go and get all these reports like functional assessments, occupational therapists, assessments, behavioral assessments, pay about 800 per assessment, if you’re lucky, so that you can actually go in and apply to have funding under the NDIS. They are going and getting these health plans, care plans from the GP’s. However, these care plans from the GPs are not enough for OTs these days to be doing assessments, the way that the NDIS needs it, you know, in order for them to get access to the NDIS. So you’ve got people with huge disabilities trapped because one, the forms are tedious, confusing, the language in those forms, I sometimes even struggle to understand. You have to have different people, different healthcare providers, filling those forms, in addition to yourself, use the language that the NDIS likes, because you cannot even mention sometimes your medical issues because that’s not your disability. Then you have to support your claims, support what you’re saying on your forms with all these assessments. By the time you get this together, if you ever do. How do you get someone with mental health challenges? How do you get someone with mental health health delays? How you get someone that is not able to access the community, go do all this paperwork especially if they don’t have carers or if they have aged carers. So if you have carers who don’t understand this as well, yes there is a huge gap in accessing the NDIS, said Ruth Gonzales, Founder and CEO of ACALS (Accessible Care and Lifestyle Services). “The changes that I’d like to see addressed in the NDIS review, as a provider…They have issue with time – when a provider puts in a request, the NDIS will be mostly likely to respond on inquiry of a participant than answering the provider. So I feel there’s not enough support for NDIA/S to assist a provider because they have an inquiry. For example, we had an issue where we meant to claim. The participants’ funding was not coming to us, because there was an issue in the NDIS portal. They told us to request an inquiry, which we did, they got back to us NINE months after! We actually forgot about the services. They’re asking, are you still inquiring about the inquiry you left and I am like which inquiry? So that was an issue! We forgot about it, especially me, I forgot about it. I said you know what, you can just drop the case because I don’t even know which one you’re talking about because it was so long ago.The changes that I would like to see on the provider side, on NDIS services – first, when a participant comes to request for a service to be an NDIS participant member, there’s a lot of process. That process doesn’t go straight to NDIS. It goes to the doctors, and then half of the time they get rejected if they don’t know the steps. The documentation that’s involved, 40% or 90% of the participants, they don’t even know the process and you find someone is walking around and they ask, are you an NDIS provider? Can you help me to get my NDIS funding? When the funding comes, it’s normally even less than what they want. So I’ll give an example – $10,000 and you can see that person has a very high need. So those are one of the changes I like to see, especially to reduce the timeline of application process. It takes six to 12 months just to get that approved, and it’s not good enough, because they have a need and they can’t get the service, said said Deo Bahigwa, Founder, Guardian Nursing Agency.
“What I would like to see change is the time it takes. There has been times where we’ve had a participant who’s moved into our service and there hasn’t been any kind of funding for about at least three months, sometimes. In the meantime, we’re still paying for staff, we’re still paying for things that that participant needs.Three months can be a very long time with no funding whatsoever. So now, I think things are changing, which is fantastic. The other thing that I probably would like to talk about is also when it comes to renewing of registrations as well, that part there is what I work with more so and the timing of that is just taking a long time. It can take up to a year even after, and this is a renewal of a registration. That’s what we’re facing at the moment. Because, you know, do we still do internal audits, do we still continue? It’s like you’re not registered, even though you are, it’s almost like you’re in limbo, and we’re still continuing to do internal audits and continuing with different types of audits but at the same time, we’re still waiting for the renewal to be approved. So things like that, but as far as the review of planners, then your time is probably of the essence, said Kamilla Dave, Director, Manaia Assist. Quotes and voices from Australians navigating NDIS from some of the respondents to the Developing Australian Communities June 2023 research survey into the NDIS review and what people think needs to be addressed.
Names and identifiers removed to ensure anonymity.
“Make it easier for us to spend money where we would like to use it but caped and not for providers to overspend.
“For anyone with a mental health disability, it is very hard to apply for NDIS. I have physical and mental issues, and have found it hard to get reports from all of my specialists within the allotted timeframe. The paperwork required, has confused me to the point that I gave up trying to get everything together, a long time ago. Every time that I contacted a provider for help, I was told that I would have to be approved before they could help, or they wouldn’t get paid. After that I contacted the local area coordinator. They simply told me that I had the correct forms, and that I had to get them filled in. I asked many questions, and was always referred back to the website, and told that I would have to get an assessment done, and to contact a provider for that. Back to providers won’t help unless you are approved. So, I went in circles for a year before giving up.
“More checking on providers and whether they are delivering what they charge for.
“List of therapists by area
“What is available from chemist – Pads, bibs, etc and the various suppliers to compare costs
“NDIS has created an industry of providers, administrators and allied health professionals – none of whom do the actual caring – this is left to unsupervised staff who don’t have the skills or support they need. The severely disabled who don’t have a voice are worse off than under the health department who provided better care under the supervision of nursing staff. The staff ratio looks better on paper than larger facilities – but clients are isolated if they are unable to express their needs and un supervised casual and agency staff fill many shifts – NDIS and recipients are being ripped off by the lack of un-announced visits to facilities to check whether service delivery is according to the funding being charged. Management and accountability is by filling in forms not face to face.”
