The final section in this chapter summarises the key quantitative and qualitative findings relating to reasonable and necessary supports.
5.6.1 Evidence from large scale surveys
In wave 1, the majority of NDIS participants (75 per cent) and their carers (84 per cent) were either satisfied or very satisfied that their current disability supports were reasonable and necessary. These levels of satisfaction changed very little over time.
A minority of NDIS participants did not consider the supports they access to be reasonable and necessary (about 9 per cent in both waves 1 and 2).
The impact of the NDIS on satisfaction with supports being reasonable and necessary was estimated to be large and highly statistically significant. For adult people with disability, the NDIS was estimated to increase the probability of being ‘very satisfied’ that supports were reasonable and necessary by 83 per cent. For children with disability, the impact of the NDIS was 51 per cent.
There was heterogeneity in the estimated impact of the NDIS on satisfaction that supports were reasonable and necessary by disability type. The lowest impact of the NDIS was for adults with an intellectual disability followed by those with a mental/psychosocial disability. The highest impact was found for people with a developmental/congenital disability.
Although the impact of the NDIS on the satisfaction of carers that supports are reasonable and necessary was somewhat smaller than that estimated for people with disability themselves, the impact was still strong and statistically significant.
Positive impacts on satisfaction increased for carers of child participants up to the age of 10 years and decreased thereafter. For the carers of adult participants, the higher the age of the participant, the lower the impact of the NDIS on satisfaction that supports were reasonable and necessary.
People with disability who joined the NDIS during the early roll-out (in the first half of 2014) were less likely to report that their supports are reasonable and necessary compared to those who entered the NDIS later.
Satisfaction with supports being reasonable and necessary increased with time spent in the NDIS. Therefore the longer an NDIS participant spends in the NDIS, the more likely they are to be satisfied that their supports are reasonable and necessary.
When comparing individual responses in waves 1 and 2, some change in satisfaction that supports were reasonable and necessary was observed over time. Overall 25 per cent of NDIS participants reported increased satisfaction, 27 per cent reported decreased satisfaction and 48 per cent reported no change from wave 1 to wave 2.
5.6.2 Evidence from in-depth qualitative interviews
The qualitative data adds a more nuanced understanding around how respondent groups perceived the concept of ‘reasonable and necessary’ and what contributed to their satisfaction and dissatisfaction with NDIS funded supports.
All groups interviewed as part of the evaluation expressed concerns around the concept of ‘reasonable and necessary’ supports as evidenced by the variability in the range and quantity of support services included in NDIS plans.
Variability was thought to be attributable to a number of factors including:
NDIA planners applying different rules to what was eligible for inclusion or not and planners’ variable levels of skills and experience in the disability sector. These were seen to result in inconsistencies and inequity in support provision between participants with the same diagnosis or condition.
Variability over whether therapies and services that had been allowed as part of pre-NDIS funding packages would continue to be funded by the NDIS.
Perceived gaps in plans - many NDIS participants continued to be disappointed to see items and activities they had hoped to access not funded under their NDIS plan. These included alternative therapies and social and recreational activities. Other unfunded services and supports were related to overlaps with mainstream services, in particular education and health.
In wave 2, respondents reported 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.
Having services and supports not funded by the NDIS because they were deemed not to be ‘reasonable and necessary’ contributed to decisions to withdraw from the NDIS (both before and after planning).
NDIA staff understood and described the challenges of achieving consistency in planning processes and outcomes, particularly when guidelines about reasonable and necessary supports were under ongoing development.
NDIA processes and procedures evolved over time during the period of the evaluation. There was evidence that NDIS participants had become more knowledgeable about using the language and philosophy of the NDIA in order to include previously unsupported services and supports in their plans.
Concerns were present about whether all people with disability 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’.
Wellbeing
Integrated findings
This section integrates and summarises the quantitative and qualitative findings relating to the wellbeing and quality of life of people with disability and their families and carers.
The evaluation finds that:
the NDIS has led to a modest improvement of the wellbeing of people with disability, which is improving with time in the NDIS;
despite the improvements brought by the NDIS, the wellbeing of Australian people with disability remains extremely low, at a level well below the national average for all Australians;
the NDIS impact on wellbeing is age- and disability-type related;
a minority of people with disability report lower levels of wellbeing since the NDIS, for a large number of different reasons;
no statistically significant evidence has been traced that the NDIS has improved the wellbeing of the families and carers of people with disability, with the exception of a modest negative impact reported by families and carers of children with disability;
the evaluation describes and analyses in detail many aspects of disability care that have changed because of the NDIS and documents the way these changes have impacted on the wellbeing of people with disability; and
on the whole, the wellbeing of people with disability is improved by the NDIS, however, the wellbeing levels of people with disability remain extremely low, and the benefits from the NDIS are not spread evenly among all NDIS participants.
Although wellbeing is not a precisely defined and exactly measured concept, it is recognised in the social and life sciences to be very strongly associated with a broad range of easily measured objective life-outcomes. Wellbeing is not only recognised as a measure of outcomes that have happened, but also as a good predictor of opportunities and future outcomes and as such it has been treated by the evaluation with the importance it deserves.
The evaluation recognised that measuring wellbeing is not an exact science and employed three nationally and internationally recognised methodologies to ask the same important questions in different ways and from different angles. This way, the evaluation does not attempt to resolve the debate of how to measure wellbeing, but to collect robust evidence on a question that is critical for all public policy: ‘is the wellbeing of people improving as a result of this policy?’ To a reassuringly high degree, all different measures utilised by the evaluation present a very similar picture on the impact of the NDIS, hence the presentation of the evaluation results does not focus on the comparison between the different measures, these being left for more technical methodological future investigations.
Both quantitative and qualitative evidence demonstrates that the NDIS had a positive impact on the wellbeing of its participants. The quantitative evidence showed that this impact was small to begin with, but was followed with further modest increases observed with longer time in the NDIS. However, compared to levels of wellbeing in the general Australian population, NDIS participants and non-participants alike report much poorer wellbeing, which had remained well below national averages even after the NDIS-induced improvements in wellbeing had occurred.
The qualitative interviews explored in-depth the ways in which the NDIS was impacting on the wellbeing of people with disability. For NDIS participants, increases in wellbeing were related to having better services than previously and increased independence. Improvements of wellbeing were associated with ‘living’ rather than ‘just managing’ or ‘surviving’, and with generally feeling happier. Since joining the NDIS many achievements were reported, relating to NDIS participants’ goals and aspirations, which subsequently impacted positively on wellbeing. Opportunities for increased participation in social and recreational activities, improved skills and developmental progress were found to have led to enhanced levels of wellbeing.
The quantitative evidence however, revealed that not all NDIS participants had experienced improvements in their wellbeing since joining the NDIS. In particular, NDIS participants with a mental health/psychosocial disability consistently reported lower levels of wellbeing than people with other types of disability. Further quantitative analyses found that NDIS participants with intellectual and developmental disability also reported poorer wellbeing.
Quantitative evidence showed that the impact of the NDIS on wellbeing depended on the age of the NDIS participant. For adult participants, the positive impact of the NDIS on wellbeing increased with age, reaching its peak in their mid to late 40s and then consistently falling as participants aged. The NDIS was not found to have an impact on the wellbeing of child participants.
Quantitative evidence also showed that NDIS participants living in urban areas reported higher levels of wellbeing than those in rural areas, and that those who experienced unmet demand for supports reported poorer wellbeing.
Wellbeing of families and carers
A mixed picture emerged from the quantitative and qualitative evidence on the impact of the NDIS on the wellbeing of families and carers of NDIS participants. While the qualitative interviews showed that families and carers had experienced increased wellbeing as a result of the NDIS, the quantitative evidence cannot trace a statistically significant improvement in carer wellbeing. Indeed, for carers of younger participants aged 8-15 years, the NDIS was found to have a small negative impact on wellbeing.
Although the quantitative evidence showed that carer levels of wellbeing were much higher than for the NDIS participants themselves, average wellbeing was still lower than that for the general Australian population. Moreover, levels of reported carer wellbeing fell slightly over the duration of the evaluation.
The quantitative evidence indicated that the wellbeing of families and carers was strongly related to the amount of perceived control they have over how they spend their time. On average, carers with a lot of control over their time reported the highest levels of wellbeing, while those with no control had very low levels of wellbeing. The quantitative evidence also showed that carers of NDIS participants with mental/psychosocial disability have lower levels of wellbeing than the carers of NDIS participants with all other disability types.
Both quantitative and qualitative evidence contributed to the evaluation’s broader understanding of the factors influencing the wellbeing of carers of people with disability. The quantitative evidence showed that carers reported particularly high levels of satisfaction with their relationships with service providers and also with the supports provided to the person with disability to make progress at home. This latter point was reinforced by the qualitative interviews, with families and carers reporting increased wellbeing as a result of the NDIS participant having more opportunities to participate in activities they enjoyed, and of being able to participate in wider interests outside of the home.
The qualitative evidence suggested that enhanced service provision under the NDIS can have a positive impact on carer wellbeing, by allowing greater opportunities for self-care and for spending time with other family members. It also suggested that the NDIS provided carers with greater confidence around the future plans, activities and supports of the person with disability they cared for.
Both evidence sources identified factors through which the NDIS had impacted negatively on the wellbeing of family members and carers. In the quantitative survey, carers reported high levels of dissatisfaction with family support to relieve stress, the availability of outside help to take care of all family members, opportunities to pursue their own interests, and the availability of friends or other people to provide support. The qualitative interviews went deeper highlighting the anxiety of many families of people with disability about the long-term sustainability of the NDIS. The NDIS was seen as imposing an administrative burden which led to stress and negatively impacted on the wellbeing of some families.
Both sources of evidence report frequently the presence of financial stress among families and carers of people with disability. Although the evaluation found financial stress to have decreased somewhat with involvement in the NDIS, a large proportion of family members and carers continued to report financial stress at the later stages of the evaluation.
