This section integrates and summarises the quantitative and qualitative findings relating to choice and control and its implications about consumer directed care in the NDIS.
The evaluation finds that:
the NDIS leads to improved satisfaction with choice and control for the majority of participants, but not for all;
the evaluation identifies specific sub-groups who do not enjoy this improvement in satisfaction as fully as other, with some reporting being worse off in the NDIS;
most families and carers also report improved choice and control, however, at a lower level than people with disability themselves report;
those who care for children with disability also report lower satisfaction with choice and control;
around a quarter of families and carers report that their choice and control declined with longer time in the NDIS;
the evaluation finds that there are still many family members and carers who can exercise better choice and control, but who appear to be struggling within the NDIS and who are asking for more care for the family rather than just the person with disability;
overall the evaluation finds that consumer directed care has increased the satisfaction of a majority of NDIS participants; and
at the same time the evaluation finds that consumer directed care does not work as well for all NDIS participants and that for some it brings negative outcomes, which in some cases become worse with longer time in the NDIS.
NDIS participants
Both the quantitative and qualitative evidence indicated strongly that joining the NDIS leads to improvements in the choice and control people with disability have over their supports. Our surveys asked all NDIS participants about their pre-NDIS experiences regarding choice and control. The quantitative evidence shows that compared to their experiences before the NDIS, the choice and control of most participants had either improved or stayed the same. Comparisons of NDIS participants with non-participants reiterated this finding. Compared to those not participating in the NDIS, NDIS participants were considerably more likely to report that they had a greater say over which supports they received and, even more positively, about where these supports were obtained than their counterparts outside the NDIS.
Both quantitative and qualitative evidence agree, however, that not all NDIS participants are able to exercise more choice and control over their supports. Around a fifth of NDIS participants in the quantitative data in both waves 1 and 2 felt that they had little choice and control over their supports. The impact of the NDIS on perceptions of choice and control (relating to say over which supports were received) was found to be lower for participants with a mental/psychosocial disability. Moreover, NDIS participants who felt that their supports had decreased since joining the NDIS were more likely to report poorer choice and control.
The qualitative evidence further supports and illustrates the finding that vulnerable groups (and particularly those with intellectual disability and complex needs), those NDIS participants who were unable to navigate the NDIA website to obtain information about services and providers, and those who were less able to articulate their support needs, all experienced poorer choice and control over their supports. The qualitative interviews highlighted a consistent need for better advice and assistance around planning and plan implementation including the role of advocacy to assist in improving choice and control for all NDIS participants.
Mixed results were found regarding the relationship between the location of the NDIS participant and perceptions of choice and control. While no significant differences were found in the quantitative evidence between NDIS participants living in urban and rural areas, the qualitative evidence showed that effective choice and control was more difficult in rural and remotes areas. This was primarily due to limited numbers of service providers and the longer waiting lists outside the main urban centres in the NDIS trial sites.
Both quantitative and qualitative evidence indicated that for many NDIS participants, further improvements in the choice and control people with disability have over their supports occurred with longer time in the NDIS. The qualitative interviews suggested that increased levels of choice and control occurred over time as a consequence of NDIS participants becoming more familiar with the NDIS and its processes and language. Increased funding of support co-ordination or case management services in wave 2 was also considered to have improved communication with service providers.
The qualitative interviews highlighted many of the ways in which NDIS participants were utilising their enhanced choice and control. While initially NDIS participants typically sought more frequent and intensive support rather than different types of support, by wave 2 there was evidence that this had changed. With longer time in the NDIS, participants were increasingly likely to request additional types of supports and also to change service providers. A greater demand for improved flexibility in the timing, location and provision of supports was also seen.
Both sources of evidence suggest that a majority of NDIS participants wanted to have more choice and control over the supports they receive. The qualitative evidence allows us to understand in-depth what constrained the ability of NDIS participants to exercise effective choice and control. Constraints included a lack of service providers, waiting lists for services and limited information about provider options. In addition, while increased flexibility of service provision was noted within the disability sector, some service providers were unresponsive to changing client requests. The use of service contracts to formalise support provision was considered to be a further impediment to those who sought more choice and control.
Both sources of evidence found that family members and carers reported high levels of satisfaction with the choice and control they have over the supports of the NDIS participant they care for. The quantitative evidence showed that most carers felt that their levels of choice and control had increased over time in the NDIS, around a quarter reported that their choice and control declined between waves 1 and 2.
While the quantitative evidence indicated that the NDIS had a positive impact on carer satisfaction over their choice and control, this impact was lower than for the NDIS participants themselves. Also carers of participants with a mental/psychosocial disability reported lower levels of choice and control (both in regards to what supports were received and where these were obtained) than carers of people with other disability types. While still positive, the impact of the NDIS on carer choice and control was less for the carers of child participants compared to those caring for an adult with disability.
While the quantitative evidence found a small but positive impact of the NDIS on the ability of carers of NDIS participants to take adequate breaks from their caring role, both data sources indicated that many family members and carers struggle to have time away from providing support and to access adequate carer support and respite services. In particular, the qualitative evidence across the evaluation period consistently found that many family members and carers of NDIS participants (particularly of young children) wanted greater attention to be paid to the family context and carer needs in planning and review processes.
Self-managed plans
Both the quantitative and qualitative evidence indicated that only a minority of NDIS participants had chosen to self-manage their NDIS funding and that levels of uptake did not increase over the duration of the evaluation. The qualitative evidence showed that the administrative activities associated with self-managed funding was off-putting for many NDIS participants and their family members and carers. Concerns were also raised about a lack of safeguards within the NDIS to protect against potential fraud or financial mismanagement. However, those who decided to self-manage their NDIS funding were positive about the benefits of doing so, principally in relation to having greater choice and flexibility over service provision including opportunities to access non-NDIS registered service providers and support workers.
