a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews;
For those participants who needed to test their eligibility for the NDIS, the process has varied greatly over the years. For myself, my family and friends, the greatest difficulty experienced was the inability to gain specific information about applications, their status and what information was missing or required to demonstrate eligibility. I once had someone explain to me that NDIS access was like gaining entry to an exclusive club that you need to know the passwords and secret language for, but it changes daily, and nobody can tell you. This has stayed with me as an accurate analogy.
Access to a local planning office and planner, with plans being created and revised by someone who understood the barriers (and benefits) of the rural community was helpful, however, with planning now being completed by a planner who could be located anywhere at all, this local knowledge has been lost. An example of why this matters is when explaining why a plan has been underutilised – I explained that I was waiting on four separate speech therapist wait lists (for an appointment that needed to be undertaken in person). The planner asked repeatedly “but why can’t you just use someone in the next suburb”. I explained I was already travelling up to 4 hours round trip, but this was not taken into consideration. This was again the case when explaining that core supports are underutilised as there are waitlists (sometimes years long) for staff with the appropriate training and skill in this region.
Until the past 6 months, I have not had a plan implementation since plans stopped being created by our local office (including in my time as a support coordinator). This has been a welcome reintroduction, particularly because of the transfer to PACE. I would request however that additional time is spent on these – 5 minutes is still not enough time for the plan to be fully explained and understood for the average person.
b. the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants;
The local office of the NDIA services a wide area, with a single location (Bathurst). The local partners in the Community have a few small offices in different areas across the regional footprint. Large areas remain without a “local” office which is actually local to them, particularly as many of these areas have little or no public transport options. This leaves the National Contact Centre (NCC) as the primary point of contact (either via phone or webchat) for most non-scheduled enquiries, which creates problems in and of itself.
Our area has poor internet and phone service except in the larger population centres. The NCC is staffed by a number of people with limited understanding of disability who can be quite impatient and/or difficult to understand on the phone. I myself have been hung up on when the operator could not understand a word I was trying to say due to a poor line connection on more than one occasion. The information provided by the NCC is also often out of date, contrary to that provided by planners or NDIA Operational Guidelines and in some cases is personal opinion, rather than factual. The webchat is also less accessible than in the past, where the ability to print a response and date was available. Timeframes for answering phones or webchat vary wildly, however, since the introduction of the new PACE system, this has been exceedingly slow (often measured in hours, rather than minutes).
c. participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services.
The market in regional and rural areas remains exceedingly thin. There is a limited pool of support workers that providers are able to recruit from, which means the same people are often fired and hired from different organisations, creating a revolving door effect. This is exceptionally concerning, as I believe there are likely incidents which should be reported to quality and safeguards that are not, as providers are aware that they will then not have enough staff to fill shifts. For those supports which are high quality, there is exceptional demand, creating long waitlists.
As plans are not built to include provider transport, people who are in regional and rural areas are at a significant disadvantage. If each provider bills 30 mins of this daily, that is 182hrs annually of support the participant will not receive. If the participant is receiving multiple shifts, this is magnified. I am aware of at least one family who have paid outright for a second-hand vehicle, insurance and petrol for their support provider from their personal finances, as this was the only way that they could utilise their Husband and Fathers plan adequately in their rural area.
The idea of negotiating prices in a regional or rural market is almost laughable. After being on a waiting list for months, if not years, you are advised that ‘this is the price, if you don’t like it, we will just offer your service to the next person waiting’. Providers are either new start-ups and trying to recoup the enormous costs associated with this (especially if registered providers) or have transitioned from the block funded model and are still transitioning their financial modelling and ways of thinking (and can be guaranteed to be charging TTP). The only success I have had negotiating is removal of centre capital and non-face-to-face costs after requesting detailed break downs of these and making threats of fraud reports.
I have particular concerns about the number of providers who gleefully accept the “fun” shifts with participants, such as visiting cages, going to the movies, concerts, going bowling or fishing, but will not under any circumstances undertake personal care, as it “isn’t worth their time or money”. The fact that the NDIS pricing arrangements list the maximum rate for these supports as equivalent has created a significant gap in the market for high skilled workers for the more serious support work tasks. I can’t say I blame them completely – why would I want to take someone to the toilet and shower them, then help them clean their home when I could be paid the same rate to gain access to the Taylor Swift concert as their Companion Card support?
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
I have a CALD background, but am not an Aboriginal or Torres Strait Islander person, so am speaking only of my reflections, however, there is a significant lack of understanding of culturally appropriate support from both the Agency, Partners in the Community and Providers in general. There are of course exceptions, but I think there is significant work to be done to better support and recognise this. Examples of this include demanding that planning or discussion be held over the phone, not allowing the person to invite appropriate elders to the meeting/s or discussions or asking the person if they require a translator or a plan in a different language.
I think there also needs to be understanding from all parties that people accessing the NDIS come from all socio-economic backgrounds. On more than one occasion, I have
had planners or providers advise that I should talk to Centrelink as they can refer me (or my family member) somewhere to assist with a matter. I am not in receipt of a Centrelink payment.
e. any other related matters. I have some particular concerns as a result of the NDIS review and the impact this may have on regional and rural participants, namely:
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Removal of self-management This is particularly problematic for people in rural and remote areas who require consumables. Larger, registered providers have been known to take up to 6 months for deliveries (this includes those on the preferred continence providers list). Access to products via self-management enables participants to adapt to changing or fluctuating needs readily through ‘off-the-shelf’ purchases. These are often significantly better value than purchasing through registered providers.
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Provider registration for services that operate outside the disability space. (such as lawn maintenance, cleaning, meal prep and delivery e.g.) Many participants want the freedom of not disclosing that they have a disability and NDIS plan. This removes this option and forces another layer of disclosure on us. Many local services are small, run by people who don’t understand NDIS and will not register no matter the cost or complexity, as they are able to source alternate work. Where a provider may know a participant, there is a risk of opinions being formed about medical status, capability, ability to work etc jeopardising community involvement, employment and relationships. This is particularly true in regional/remote areas or those with thin markets.
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PACE PACE is causing significant delays and difficulties not only for those who have already rolled across, but to those who are waiting on the NDIA to take other action, both participant and provider alike. As a result, the participant service guarantee is not being
adhered to. Will NDIA commit to properly testing any/all further new systems
thoroughly prior to roll out to reduce these unnecessary delays and the significant impacts they have on stakeholders?
- Removal or plan intermediaries/replacement with Navigators A substantial portion of intermediaries are people with disability who have been able to return to or remain in the workforce through flexible work options that are not readily available elsewhere, again, this is particularly true in regional or rural areas where flexible work options are not as common as metropolitan locations. There is an abundance of lived experience expertise that will be lost if navigator roles are put out to tender and large organisations are successful - most pay lip service to reasonable adjustments in the workplace only.
In addition, with Support Coordination being one of the primary means of a participant understanding the process of disagreeing with an Agency decision, will there be the same opportunities when this role is tendered out, i.e., will Navigators be able to criticise or effectively ‘bite the hand that feeds them’ without penalty?