Concerns around Reasonable and Necessary Supports – Evidence from In-depth Qualitative Interviews
The qualitative data indicates that all groups interviewed as part of the evaluation expressed concerns around the concept of ‘reasonable and necessary’ supports and the variability in the range and quantity of support services included in NDIS plans.
5.5.1 Concerns around reasonable and necessary supports for NDIS participants and their family members or carer
In general, respondents thought that their NDIS plan covered reasonable and necessary supports. However, the boundaries of what were ‘reasonable and necessary’ supports were a principal cause of dissatisfaction with plans for many NDIS participants and their carers.
They talked so much about what’s reasonable and necessary. I said to the lady, ‘I am sick and tired of hearing that b*** phrase.’ (D13C W2)
A number of factors were identified as contributing to this dissatisfaction in both waves 1 and 2, including:
Variability in plans between participants with the same diagnosis or condition and inconsistency both within and between trial sites in the types of support services that were being funded in participants plans;
Variability with plans accessed by participants under previous funding agreements; and
Perceived gaps in plans.
Variability in plans
Respondents reported that because of the prevalence of information sharing between NDIS participants (via social media or support groups), it was very apparent when a participant with the same diagnosis or condition received different services or a larger (or smaller) funding package. This led to anxiety for some respondents, contributing to feelings that they were ‘missing out’ on funding or services.
The experience and personal attitudes and beliefs of NDIA staff was reported to influence what was thought of as ‘reasonable and necessary’. For example, one mother of a son with intellectual disability thought that funding for her son’s accommodation was reduced because their second planner thought that it was the family’s role to provide that support.
Respondents also reported inconsistencies between trial sites in what was and what was not being funded in participant plans.
Variability with pre-NDIS plans
Respondents with previous experiences of funded services tended to report that their new NDIS plan compared favourably with pre-NDIS plans. There were, however, some exceptions to this positive comparison and this contributed to dissatisfaction with current NDIS plans.
For example, several respondents considered previous early intervention funding packages to be more flexible than that allowed under their child’s NDIS plan, such that parents/carers had greater choice and flexibility over how they could use money to purchase services and equipment.
As stated earlier, funding for family supports was also considered to be inconsistently included in plans.
Gaps in plans
Whereas many respondents reported that the NDIS had helped them to increase their supports, others continued to be disappointed to see items and activities they had hoped to access not funded under their NDIS plan.
The range of services that continued not to be funded by the NDIS in wave 2 was broadly similar to those noted in wave 1. These included alternative therapies (naturopathy, osteopathy, chiropractic treatments) and social and recreational actives (including drama classes, gym membership, camps for young people, hydrotherapy/swimming lessons, horse riding, and social groups). Other unfunded services and supports were related to overlaps with mainstream services, in particular education and health. The concept of ‘reasonable and necessary’ continued to be used by the NDIA as a basis for not supporting these activities and services.
Of note, advocacy was not explicitly included in plans, though it appeared some providers were prepared to take on this role. The lack of funding for advocacy was framed as an equity question for many respondents.
In a way I feel as if that when someone goes into a meeting and they’re clearly not very good at advocating for themselves, there needs to be a third party advocate that kind of is there. …. it really should be like an ability to go to a third party that can make sure that there is equality and there is equity. (A10PWD W2)
Respondents mentioned that they regularly paid out-of-pocket expenses for services such as transportation (for example, bus tickets and taxi fares) and activity fees (like sporting and social participation activities) as funding for these was not included as part of their plan. There was some indication from respondents that the presence of these expenses discouraged participation in some of the activities.
Change over time
It should be noted that NDIA processes and procedures evolved over time. Feedback from NDIS participants in wave 2 showed evidence that the NDIA had changed their policies around some items (for example iPads) such that they were now funded.
In wave 2, there was a perception among respondents that NDIS planners were making decisions about reasonable and necessary care based on formulas or standardised plans for particular diagnoses rather than considering individuals’ support needs. On occasion when participants’ needs were different to those standard plans, they reported having the services denied.
The only thing that I really want is to have funded gym. They give people with physical disabilities gym memberships because it's a physical disability but they have this blanket rule now, initially people with mental illness could get a gym membership now they’ve decided to veto it. (B05 PWD W2)
Respondent anxiety about the potential for plans to be ‘capped’ at review led several carers to use guidelines about what was reasonable and necessary to successfully argue their case for the continuation of services and supports for their child.
I have letters of support from each practitioner and I said to her, 'You funded all of this indirectly in the first 12 months. You have letters of support. You've got evidence of how it's helping him. It is critical to his health and wellbeing. If you don’t fund it for the next 12 months there's going to be big issues.’ And she just said, ‘Well leave it with me. I'll talk to my superiors. My gut feeling is how can we say no when we've already funded you for 12 months?’ (C18C W2)
There was also evidence that over time NDIS participants had become knowledgeable about using the language and philosophy of the NDIA to include unsupported services and supports in plans. This respondent suggested she had obtained funding for respite in her son’s plan by having it described as ‘therapy support’, and also negotiated funding for a disability support worker to develop his ‘life skills’ with the (embedded) aim of building basic literacy skills:
What I’ve learnt over the last year rather than pushing, this sounds terrible, rather than pushing a point I’ll just change it. I’ll just change it so it fits…What I did was then ask for a support worker to help build his independence skills, teaching life skills, catching a bus, working out change, telling the time and that got approved. (C14C W2)
Concerns were raised about whether all people with disabilities had the same capacity to develop and use their knowledge and understanding of the NDIA to access services and supports that may be otherwise deemed not ‘reasonable and necessary’.
Several respondents suggested the ‘reasonable and necessary’ guideline may discriminate against NDIS participants and their families and carers living in less affluent circumstances, who could not afford to self-fund recreational or social activities.
Similarly, other respondents were concerned that expectations by the NDIA that participants would cover costs for equipment items under $50 (e.g. physiotherapy aids and iPad apps) was problematic for people on low incomes.
5.5.2 Concerns around reasonable and necessary supports for people with disability not participating in the NDIS
Several non-participants expressed concerns that the services and supports that they considered or had experienced to be most helpful were not funded by the NDIS, because they were deemed not to be ‘reasonable and necessary’. In all cases this contributed to decisions to withdraw from the NDIS (either before or after planning).
I was told they wouldn’t be paying for a colour sensor because it wasn’t deemed what was necessary and she said, ‘Well you know, you’ve survived up until now without a colour sensor’ and you know, ‘There’s probably other means, we’ll get an OT to have a look. There’s probably other means of you identifying your clothes’ and it just seemed to me as though it was basically they were going to come up with the most cheap method which was not necessarily going to meet my needs and I find it offensive that they - I’m the expert in my life. I know what works for me and what doesn’t and I can’t shop independently if I don’t have a colour sensor and they don’t consider this stuff. It takes away - they’re not recognising my disability for what it is and it’s what they deem is necessary. (B01 NP)
They said to me ‘What sort of things would make a difference in your life’’ and I said ‘Well I’m using a manual 1960s brail machine so things like a new brail machine would be great’. I said ‘Other than there’s not a lot that I need’. ‘Oh brail’s obsolete’ was the response. No it’s not. Not by any means. (B02 NP)
5.5.3 Concerns around reasonable and necessary supports for the service provider and other stakeholders
In both wave 1 and 2, disability service providers and representatives from workforce stakeholder organisations observed considerable variability in the range and quantity of support services included in NDIS plans. A lack of transparency in how these funding decisions were made and what supports were considered to be reasonable and necessary was reported.
So between one planner and the next, one planner would respond to a priority goal, for example, of supports to enable a child to have independent communication… one planner might assign $5,000 to that, the next planner might assign $1,000 to that, without any kind of rhyme or reason, or rationale behind it, and there would be hundreds of examples of that kind of variability both, within each office and then across the offices, as well. (A01S W2)
This variability was attributed to the differing levels of knowledge and expertise amongst NDIA planners and varying levels of capacity among NDIS participants or their family to understand the system and adequately advocate and articulate their support needs.
It still does depend a little bit on, or quite a bit actually, on how savvy the person is or their advocate... And that could be their family. We’re still seeing variations in plans based on that. (B01S W2)
I think the knowledge of the planners is probably one of our primary concerns. The inconsistency of answers that we get, that our clients get, that come out across the country, I just, I guess it’s the quote/unquote level of fairness. (A03S W2)
Concerns continued to be raised regarding the considerable level of skills and experience required by planners to understand the needs of different cohorts of people with disability. Understanding of disability, mental health issues, and allied health roles and interventions were considered to be necessary for planners in order to improve the quality of plans. Many did not view current NDIA planners as having these requisite skills.
Issues to do with the awareness of planners around allied health and when and how to bring allied health into the picture around what we can offer in the range of supports….allied health needs to be brought into the equation in the planning stage so that they can much more adequately help somebody understand right upfront what are realistic options. (11R W2)
The people making plans don’t have skills and experience in mental health. (08R W2)
Problems with NDIA staff knowledge extended beyond inconsistency in plans to other aspects of the planning process. The lack of disability specific knowledge within the NDIA was perceived to result in NDIS staff providing inappropriate advice to participants and families about which therapists they should engage. Concerns about NDIA staff offering clinical advice were also reported.
One of the things we’re finding is that NDIS doesn’t seem to understand the fact that we’re specialists. So we’re not just speech pathologists here but we’re speech pathologists who understand what hearing loss does to a child… they’re just telling people well just go to your local speech pathologist because then you’re saving on travel costs and, you know, a speechie is a speechie is a speechie. And it’s not true… but no-one at NDIS seems to get that, they just think well, you know, you work with kids with disabilities, you’ll be right. (A03S W2)
In both wave 1 and 2, Allied health organisations were concerned that a lack of planning guidelines contributed to inconsistent decision-making. Concerns about perceived cost containment within the NDIS and the impact this was having on funded supports were also raised.
A lack of funding for particular supports was also reported by disability service providers and representatives from workforce stakeholder organisations. These included respite, support co-ordination, behaviour management, employment skills, and psycho-social support for carers.
Very few plans, worryingly, include anything about employment skills, even though the purpose of the Scheme is to increase someone’s social and economic participation. (08R W2)
5.5.4 How NDIA staff make decisions about reasonable and necessary supports
In both wave 1 and 2, NDIA staff reported that the use of reasonable and necessary as a concept was working well, and that most participants and their families or carers were understanding of both the need for decision-making about funded supports and how judgements were made.
NDIA staff described the challenges of achieving consistency in planning processes and outcomes across trial sites, planners, and over time, as the NDIS developed. Guidelines to help planners make decisions about reasonable and necessary supports were not immediately available when the NDIS was initially rolled out, but were established relatively early and were reported to be in ongoing development.
Several NDIA staff acknowledged inconsistencies in plans, and gave examples of occasions where planners who were new to disability or lacked knowledge of a particular disability type could have different perceptions of what could be funded. Staff continued to identify the need for more training pertaining to specific disabilities to assist with reasonable and necessary decisions.
In wave 2, NDIA staff reported how reasonable and necessary decision making was supported in local offices, including seeking advice from colleagues and convening group meeting to discuss cases and assist with decision making.
We’ve got a culture that if we don’t know the answer we will take it to a group… We also have what we call a Reasonable and Necessary Group, so planners who have a decision regarding reasonable and necessary that they just can’t work through on their own, or they’re in two minds about something, whether something fits the rules or not, they bring that, it’s like a case review… we’ll talk through it at all levels and come to a decision. (E01N W2)
Examples were given of the most contentious items for NDIS funding. For child participants these related principally to equipment such as iPads, additional school supports such as tutoring, and requests for funding for mainstream recreational activities such as swimming lessons. For older participants, examples of disputed items included requests for funding for holidays, home modifications, and high end mobility equipment.
The introduction of the new catalogue of supports and a more streamlined plan template in wave 2 were met with mixed response. A few NDIA staff indicated that the bundles of support made plans easier for participants and disability support providers to understand. More commonly though, NDIA staff observed that the move to bundles of support and more streamlined plan templates increased confusion in interpreting plans and decreased the flexibility of plans.
My gut is that we will go back to something similar to what the State offered in individual packages for people. So you come in with a disability and say you’ve got Down Syndrome so this is how I feel like we’re going, and you’ll get – they’ll say okay you can have six sessions of therapy, you can have a social activity once a month, but it will be set templates for people like TAC [Transport Accident Commission] do. (B02N W2)
