10.7.1 Eligibility and navigation of funding systems
NDIS
When reflecting upon entry processes for the NDIS, the automatic eligibility of people with certain types or levels of disability was viewed positively by respondents as this negated the need for further assessment.
However, issues relating to the eligibility requirements of the NDIS were a common concern for respondents. Access to the NDIS for some older people with certain types of disability (e.g. stroke, mental health issues and low vision) was considered to be unclear. Provider organisations reported that some of their clients had been found ineligible to transition into the NDIS and concerns were expressed about the continuation of their services.
We had a run of people [stroke survivors] contacting us who had basically been told that their disability was not severe or permanent enough for them to receive support.… [Some] people are getting a blanket no on the phone and not a lot of information about where to go from there. So it’s hard to know…because there seems to be a bit of smoke and mirrors around really how those eligibility assessments are being made. (OPS12S)
Respondents from provider organisations also reported that some of their existing clients were reluctant to transition into the NDIS. This reluctance was attributed to a lack of awareness of the NDIS, issues surrounding individual capacity to negotiate transition, and concerns that current supports would be reduced if transition occurred.
Some people have been hesitant because as part of the legislation you have a choice to join the NDIS, that’s the whole part of choice and control, but some people are concerned when they get this call from this random person [at the NDIA] they think it’s some market researcher or telemarketer. Why are you asking for my name, why do I have to consent to the NDIS? Some people are confused so they’ll say no I’m actually quite happy with what I’ve got, no I don’t want to switch…They don’t realise if you don’t say yes you’re going to lose your funding anyway. (OPS08P)
Experiences of entering the NDIS had been mixed. For some, including those automatically rolled into the NDIS, joining the NDIS had been relatively straight-forward. Difficulties were reported by many others however, including a lack of available information about the NDIS, issues obtaining necessary documentation for access requests, and delays in entry processes. For many of these respondents, considerable support to navigate entry processes had been required from a family carer or provider organisation.
It’s hard work and one wrong step and you won’t get it, sort of thing…II had someone help me, I don’t think I could have been able to do it on my own. It’s a lot of paperwork and stuff. (OPS17PWD)
The NDIS was perceived by respondents to be bureaucratic and difficult for older people with disability to navigate. This was noted particularly for individuals who had not previously been part of the formal disability sector but had instead received their supports direct from charitable organisations.
In the past a person with Motor Neurone Disease would register with us; we would allocate them to one of our staff, if they wanted that…But now they still register with us because we’re usually their first point of call after they’ve been diagnosed…So then they have to register with NDIS, then they have a planner, a LAC or at least one or both. Then the plan has to get implemented so it’s back to us…So instead of having us or the staff member here, and then making the appropriate referrals out, now they’ve got two other layers on top of that with the LAC and the planner before anything’s happening. (OPS05P)
Experiences of communicating with the NDIA were variable for NDIS participants and provider organisations. Some respondents were satisfied with the contact they had had, while others had experienced issues particularly around contacting the NDIA call centre and timeliness in responses to queries.
Difficulties with some NDIS operational processes were reported by NDIS participants and providers alike. The portal was seen as being difficult to navigate for older people with disability, while provider organisations described particular issues regarding the payment of client fees.
Every time you seem to go into the portal though they're always changing the look of it…There's a big percentage in our age group that aren't that coordinated with computers. They can do the basic stuff, but how would they get on and the NDIS, along with everybody else today, just assumes that everybody has a computer and everybody knows what they're doing and they want you all to do internet banking and this and that, and there's still a lot of old people that don't want to do that. (OPS09PWD)
Improved accessible information which provided clear messages about eligibility, assessment, funding and the implementation of supports was needed to allow people with disability to make informed decisions about their supports. For some older people with disability, access to an advocate or case manager who could guide them through all processes from initial entry into the NDIS to being able to fully access their supports was important.
Specific changes were also suggested to improve processes for older people with disability within the NDIS. Greater clarity was needed around eligibility processes, in particular around the interface between the NDIS and the health sector. Adequate preparation and time was required for planning and review meetings and a preference for face-to-face meetings was expressed by respondents. For some older people with disability, additional support or capacity building was required to enable their full participation in planning processes and also with the implementation of their supports.
Aged care system
Entry into, and navigation of, the aged care system was seen as being challenging for many older people with disability; this was especially so for those who did not have family members to assist in this process. The My Aged Care system was perceived as being difficult for older people with disability to understand and accessible information both about the NDIS and their disability support needs were difficult to obtain. Sufficient information regarding co-contributions towards aged care services and processes for approval and assignment of a care package were also seen to being lacking.
It’s very difficult to know what you can access in My Aged Care… [With the NDIS] there’s been a wealth of information for that group of people and it’s a new Scheme so they’ve had webinars and seminars and all sorts of information coming out but we get nothing in My Aged Care…Consumers deserve to know what’s available but it’s very hard to find that out unless you actually access the Scheme or get an interview. (OPS17C)
For some of the non-NDIS participants, processes to join the aged care system had progressed smoothly, with the initial referral to My Aged Care followed quickly by a home assessment. However, other respondents had encountered issues in navigating the system, reporting a lack of understanding about My Aged Care processes, difficulties making initial contact and subsequent delays in assessment and service provision.
A lack of provision for case management within the aged care system meant that provider organisations were frequently assisting older people with disability to understand and navigate My Aged Care. In part this unfunded work was being conducted with an expectation that older people with disability would choose the organisation as their service provider. Direct advocacy with My Aged Care and its assessment teams was also reported by provider organisations.
There's no-one, there's no case manager that I can go to and get information. Which is probably the most disappointing thing that we've come across. And they all talk about packages, and you qualify for this package, and oh, we'll have to wait for the funding to come through. But they don't actually tell us what the package is, if we can pick and choose out of that package. So they talk about hours, the package is a bucket of money that can be translated to hours of assistance. I don't fully understand it. (OPS08C)
Concerns were expressed as to whether people with disability (such as those with visual impairment) would be eligible for aged care funding given the emphasis of the NDIS on ageing and frailty. Respondents also reported that older people with disability may not perceive themselves as fitting within the aged care sector and would therefore be reluctant to apply for funding for supports.
[There’s a] kind of schism between people’s internal perception of ‘Well I just have a disability but there’s nothing else wrong with me’ and the need to go into an ageing system to get access to the supports that they need for the disability specific…So there’s that concern about whether or not people will be eligible, and even whether they will want to engage with My Aged Care, if their issues are not about frailty. (OPS10S)
State disability schemes
State disability funding schemes were perceived by some respondents as being more fragmented and challenging for older people with disability to navigate than the NDIS system.
The NDIS is just so much better than the state funded system that people don’t have to battle, you don’t have to navigate, you don’t have to trawl through websites to try and find out what package you can get. There are no waitlists. (OPS08P)
Charitable disability organisations and healthcare services
In contrast many non-NDIS participants who were accessing funded disability supports directly from charitable organisations or healthcare services described easy eligibility processes which had quickly led to the receipt of their services.
The ability to have regular reviews of planned supports was considered to be a positive element of the NDIS. Reviews could potentially enable changing disability support needs to be considered and appropriate supports put in place.
The interviews with NDIS participants and their carers, however, revealed mixed experiences of NDIA plan review processes. Some reviews had led to increased levels of funding and supports, while other respondents had had their supports reduced (as a consequence of either not needing their current level of care or cuts made to funding for episodic supports). A further group of participants described that the NDIA assumed that previous planned supports would continue and consequently their support needs were not properly reviewed or addressed.
Some respondents from stakeholder and provider organisations observed that funding in plans was routinely being cut at review, partly due to an underlying assumption that NDIS participants would need less support over time.
We’re also seeing people whose plans are being systematically reduced in dollar value…There’s this assumption by the agency that people are developing more independence and that they no longer need as much service or perhaps the agency was too generous originally and they’re having to, you know, rebalance that. Whatever the assumptions being made in the agency we’re seeing many, many people whose plans are being reduced year by year and people of course are not satisfied with that. (OPS11S)
Issues were also raised regarding the format of reviews. Several NDIS participants reported that their review meetings were being conducted by telephone; this was felt to be inappropriate for many older people with disability and their carers. Other respondents described review processes as being stressful and that any proposed changes in supports had to be fully justified to the NDIA. A lack of a consistent planner across initial planning and subsequent reviews was also felt to be detrimental to the ability of the NDIA to understand the support needs of older people with disability.
Examples were provided of interim reviews which had had to be requested to reconsider NDIS plans not seen as adequately meeting the needs of participants. Some of these plans had subsequently been successfully altered with advocacy from peak body and provider organisations.
We had a carer come in whose wife had younger onset dementia…his wife's initial plan was $700. Their second plan was $600, and when they had a review of the plan with the assistance of a key worker they were able to get nine hours of home care and a week of full respite with 24/7 care. That jumped to $32,000. I think that is a real great snapshot of the difference of having someone to come in, advocate and really also prepare the person for their meeting. (OPS09S)
NDIS review processes were not considered to be rapid or flexible enough to address changing support needs or crisis situations. These issues were of particular relevance for older people with degenerative conditions such as dementia, MND and multiple sclerosis.
For some people they might have a plan in place now but in six months’ time things will have really changed. And it’s quite a process to apply for a plan review and you know, have all that done, particularly when the supports are needed kind of quite urgently for a lot of our clients. (OPS04P)
Aged care system
Non-NDIS participants receiving funding through the aged care system did not describe any formal review processes that were open to them following initial decision-making about their supports. However, when their support needs changed, some respondents reported that they had informally contacted My Aged Care to discuss amending their home care package.
State disability schemes
A lack of, or at best infrequent, formal review processes within state-disability funding schemes were described by respondents. This was seen to hamper the ability of older people with disability to have the level and type of their services reviewed when support needs changed. Some of the non-NDIS participants, however, reported having an allocated state disability case worker who they could contact if issues arose.
One of the struggles we’ve had is that sometimes people were allocated a funding package from the department, the state system when they were in their 30s and despite requests for reviews and things that funding hasn’t been reviewed in many, many years even though the person’s needs have increased…and that’s been an issue because getting that additional support for those people it’s been very, very difficult. (OPS06P)
10.7.3 Equity and fairness
A lack of equity in the funding and provision of supports to older people with disability across the main funding schemes (NDIS, aged care and state disability) was reported. Those receiving funding from state disability and (in particular) aged care, were felt to be considerably disadvantaged compared to people with disability participating in the NDIS. Indeed many people with disability (who were ineligible to join the NDIS due to age restrictions) expressed a strong desire to participate in the NDIS as they felt that they would be able to access more supports both currently and into the future.
There will be people who are inside the NDIS then and then people who are outside of it but who are two years different in age but have exactly the same level of disability but who are receiving very different services because of when they acquired the disability or because one of them will have been in the right place at the right time and able to come into the system and the other one isn’t. (OPS13S)
The schemes providing funding for the supports of older people with disability were perceived to differ across several domains. These included levels of overall funding, the types of supports which were funded, the expected co-contribution of clients, and the ability to have choice and control over supports.
The underlying philosophies of the NDIS and the aged care sector were seen as being very different by many respondents. The NDIS was perceived to have a greater focus on identifying and meeting an individual’s holistic support needs including enabling greater social and economic participation. In contrast, the funding of disability supports within the aged care sector was not seen as prioritising the promotion of independence nor the pursuit of personal goals and aspirations.
It’s [aged care] a much more restricted and completely different focus and underpinning philosophy than the NDIS because it’s not about choice and control and it’s not about looking at your life and being able to contribute in community life. (OPS08S)
Many of the non-NDIS participants felt that the onus was placed on older people with disability themselves to approach funding schemes outside the NDIS for needed supports. However, service provision and funding within the aged care and broader disability systems were seen as being complicated and fragmented. To compound these issues a lack of information and guidance for older people with disability regarding the different funding schemes was observed. As a consequence many older people with disability who were ineligible for the NDIS were unaware about the funding and types of support available to them.
Since I lost my sight…there’s not one single thing that’s happened to me that I haven't organised myself. That’s local government, state government, federal government, if I haven’t initiated it then it doesn’t happen. (OPS24C)
In order to remove the perceived inequities in the funded supports of people with disability who were older than 65 years and ineligible to participate in the NDIS, respondents strongly advocated for a single funding system which provided supports to people with disability regardless of their age.
