10B Washington Street
Port Lincoln
South Australia 5606
ABN 24 625 238 959 P 8683 4401
Inquiry into the NDIS participant experience in rural, regional and remote Australia
a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews;
Participant Statements:
Statement from participant B (remote region): “Without a Support Coordinator we would struggle to navigate the NDIS system for reviews or even use the plan. We do not have the resources and technology to be able to print required documents or research providers. We do not have a good understanding of the providers that can be accessed within our community.”
Statement from participant TC nominee (remote region): “Being a participant of NDIS in rural, regional and remote Australia a few years ago changed our life for the better. We had very little, to no services through Disability SA, but within 6 weeks of her first NDIS plan, our family home was fitted with ramps, rails etc to make life easier. We have since purchased a transportable house and set it up on our land for TC to live independently. TC has high needs and we know it will get worse, so when we made the “change of situation” application 12 months ago, NDIS have not been supportive, and we feel we have been discriminated against because we live (remotely). After two reviews last year and still rejecting our applications, we have been devastated. My husband and I have major health issues and our 51 year old daughter is receiving emergency services in her own home so please will NDIS acknowledge all we are asking for is funding to keep TC in her own home 24/7 close to her family and friends”
Statement from participant KD nominee (remote region):
Our experience with NDIS in the early years of our daughter receiving her first plan wasn’t good. The planner seemed to ignore what we discussed during the planning meeting, and the plan
was then set up with a lot of stated and NDIA managed supports which then made it difficult to access providers in a remote location. We spent many months trying to have the plan changed, and given we don’t have an NDIS office or LAC in our local area, we had no choice other than to call the call centre which never resulted in anything.
During the next planning meeting, the planner asked our daughter a significant amount of questions about what she could and could not do, despite already having all of this information in her reports. This was a belittling experience and left us all feeling quite upset.
I have always been disappointed that we spent time together with K’s support team writing extensive reports and discussing new plan directions for them not to be read prior to our phone links.
Planners based interstate in large cities should not be building plans for participants based in rural and remote locations. They have absolutely no understanding of the circumstances we face, such as lack of services, lengthy waitlists, and the distances we or our providers need to travel.
b. the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants;
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Continuous and consistent feedback that there is no or very limited availability of NDIA planners after a plan has been built;
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Participant plans are often underfunded in regional and remote areas largely driven by the necessity of informal family members/carers having to be available and needing to provide more care than what they would in metropolitan areas due to the lack of choice of quality providers. If this is disclosed in a planning meeting, the plan is then underfunded;
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In return, there are constant requests for reviews for poor plans which a lot of the time comes down to who the planner is, and they don’t read reports or consider important information a lot of the time;
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Inexperience and inconsistency of NDIS planners results in frustration and despair from participants when trying to follow up funding discrepancies;
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Both the NDIA National Call Centre and enquiries@ email are regularly unaware of how to respond to a participant enquiry and frequently provide incorrect or irrelevant information. NDIA staff have no consistency in responses to participants and are poorly
trained in how to do so. In addition, the period of time taken for NDIA to address and action emails sent to enquiries frequently puts participants at a disadvantage and causes undue stress. There is also no avenue to respond to the same NDIA representative to follow up on existing enquiries, and no accountability or responsibility for misinformation provided;
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Frequency of email responses from enquiries, requesting the sender to re-submit documents in PDF format, despite them already being submitted in that format;
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Communication issue between enquiries and NDIS planners, such as excluding all documents and information from emails, reviews, phone calls to call centre, etc;
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A lot of participants say they find some of the representatives difficult to understand;
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Were it not for the provision of intermediary services such as plan management and support coordination in rural and remote regions, there would be no support for participants to access and implement plans and the provision of NDIS in these areas would fail, particularly in regions where ‘Partners in the Community’ are absent;
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LAC’s services are limited and are not very responsive according to participants so they then rely on Plan Managers who are not paid for that service. The current LAC service has become very administrative and planning decision type work which means that the level of capacity building support is significantly diminished in LAC type work and falls back onto Support Coordinators who generally have specialised skills, training and experience which is not always adequately funded, if at all;
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Frequently demonstrated ineffectiveness for supporting participants in complaints and attempts to call out fraudulent, unregistered support workers and providers to the Commission, who either do not respond or reply that as they are unregistered, there’s nothing they can do!?!
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Lack of consistency in NDIA requirements for ALL workers to hold a current NDIS Worker Screening Check, regardless of whether they are a registered provider or not. No requirement to provide support plans; no requirement to provide quotes to participants; no restriction on the rates they can charge in reflection to experience/ regulations etc; no insurance requirements.
Statement from participant JT nominee (remote region): “The NDIS planner changed her (participant) plan, goals and cut me off managing her plan all in one day. He started her new plan the next day. He had it all decided and written up when we
had the phone linkup and wouldn’t listen to anything I said even with L (DCP case worker) telling him to listen to me. It was an awful, degrading experience. I did put a complaint into NDIS and no one ever contacted me about my complaint”
c. participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services;
Due to the lack of registered and quality providers in regional areas, participants are frequently forced to utilise unregistered, inexperienced, uneducated and expensive providers (they can charge the highest price cap, which includes the 40% loading);
So ironically when the NDIS is all about ‘choice and control’ in regional and remote areas, this is nothing but a ‘free for all’. Participants report that they can engage their neighbour down the road who has no disability support experience, business credentials, clearances etc to do their cleaning, their yard work and their personal care. Without a minimum expectation of quality and/or experience from these workers, participants are regularly exploited, manipulated, coerced and financially at risk.
Whilst it is a Plan Managers responsibility to help participants to understand their funding and budget, realistically choice and control allows the participant to access services that may not be considered reasonable and necessary, which is not a Plan Managers role to determine. However, then a planner or LAC are often not contactable or reluctant to intervene and support plan reviews/change in situations as required.
Non-registered providers can charge the remote rate price cap from the NDIS Pricing Arrangements, which is available to all of them from the website. They may not be able to submit a compliant invoice or understand what a service agreement is, but they sure know how to put $92 per hour to mow someone’s lawn and take them for a coffee on a docket book. If NDIA continue to allow these practices, there surely can’t be any long term sustainability for the scheme.
Again, participant’s report that without the support of an intermediary like plan management or support coordination, in remote regions, they could not utilise their plan nor access reputable providers, nor get assistance when they have chosen poorly (an unregistered SW) due to limited choice and poor regulations.
It frequently falls back on Plan Managers and Support Coordinators to educate other providers, particularly in rural and remote areas, about basic requirements and compliance to ensure participants are accessing safe and suitable services.
d. the particular experience of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds, with the NDIS; and
Statement from participant ETK nominee (remote region), provided to SC:
“E was supported by PLAHS to apply for the NDIS in 2018, after being diagnosed with ASD Level 3 and was accepted and received his first plan in September of 2019. Parent K has experienced some difficulty in dealing with the NDIA regarding E’s NDIS plan. Since commencing support with Empowrd in 2021 K has been denied access to E’s plan due to the NDIS claiming to have 2 different dates of birth for K and not being able to properly identify her over the phone as E’s parent. K was then supported to provide 100 points of ID to the NDIA before being able to communicate to the NDIS on E’s behalf. K has also experienced difficulties in receiving copies of E’s NDIS plan in the mail and eventually discovered that the NDIA had posted the plan to the incorrect address and after refusing to email a copy of this to the allocated Support Coordinator, K found herself waiting several more weeks to receive a copy of the plan in the mail. Once a copy of the plan for E arrived, the plan managers found they were unable to book the support coordination funding and supported K again to call the NDIS Enquiries line, only to be told that another agency had already booked these funds but were not able to tell K which agency this was. K was able to confirm that E had only been connected to one provider in the past and so received support from Empowrd to approach this company to have the funds released, all of these issues resulted in E being unable to access support with therapy for many months and then due to local services having very little to no capacity, having to seek support via a company from Adelaide who were attending Port Lincoln to provide therapy support to those who had been placed on lengthy wait list and needed urgent support with Occupational & Speech Therapy. Having to go to such measures to acquire the much needed therapy for E has of course now come at an increased cost as the service providers are traveling from Adelaide to provide the required therapy. K who has limited access to the internet and phone at times finds it difficult when trying to communicate with the NDIS and requires support with most communication with the agency”
e. any other related matters. The NDIS Review recommendations and the effect this will have on Rural, Regional and Remote participants.
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Cease Plan Management / Financial Intermediary: When we commenced Plan Management services in 2018 we frequently identified claiming issues from providers, who at the time were predominantly NDIA registered providers. This provided an insight into the amount of overclaiming and fraudulent activity occurring prior to Plan Management. The introduction of Plan Management provided participants with some assurance that invoices were being checked to ensure they were compliant, in line with the participants funding and goals, and that budgets were monitored. The possible implementation of direct provider claiming from participant funding will allow similar issues as experienced by participants in the old disability block funding model and prior to the introduction of Plan Management, removing choice and control and exposing participants to fraudulent practices with so many non-compliant providers.
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Replace Support Coordination with ‘Navigators’: Some of the recommendations with the integration of the Support Coordination and Local Area Coordinator role to change over to the Navigator role are well supported, including a minimum requirement of quality, and the possibility to support participants outside of the scheme. However, in rural and remote regions participants have very limited choice/access to providers, as opposed to those residing in metropolitan areas. NDIA needs to carefully consider what changes occur within the funding model of this service, and also to ensure established Support Coordination services can continue to support participants in these rural and remote regions rather than adopt a ‘partners in the community’ type approach which will limit participants choice and control. With the removal of the Plan Manager role and budget monitoring/invoice checking, will these tasks then be passed onto the Support Coordinator / Navigator, potentially causing a significantly higher workload for each participant’s plan and reducing the quality of service delivery from their Support Coordinator? This could in turn mean small independent providers will need to either onboard new staff to assist with the overflow, or alternatively reduce participant numbers if those organisations cannot access suitable employees or the sustainability for the business hasn’t been considered by NDIA (referencing price freeze for 4 years and increasing costs for business)
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Empowrd has withdrawn services in Whyalla, South Australia and although it’s not considered a rural and remote community as per the MMM rating, due to its size; geographically located on the Eyre Peninsula which itself is a remote, regional classification, we cannot provide a reliable service due to the difficulty in sourcing staff,
accessing and keeping workers and services in the region. Our business expenses in Whyalla mimic our Port Lincoln office, yet there is a 40% difference in income. With the 4 year NDIS price freeze, it is no longer financially viable to provide supports in that region, which then directly impacts participants as it limits their choice of providers.