In this final section we provide a summary of the key quantitative and qualitative findings relating to the wellbeing and quality of life of people with disability and their families and carers.
6.5.1 Wellbeing of people with disability – Evidence from large scale surveys
NDIS participants overall have lower levels of wellbeing compared to the general Australian population. Modest improvements were seen in the wellbeing of NDIS participants from wave 1 to wave 2.
People with a mental health/psychosocial disability report on average lower levels of wellbeing and social connection than people with other types of disability.
We estimated impact of the NDIS on the wellbeing of people with disability using each of the three different wellbeing measures.
The estimated impact of the NDIS on the wellbeing of people with disability was positive but modest (being in the NDIS was found to increase wellbeing by around 5 per cent).
However, not all NDIS participants experienced enhanced wellbeing. Inequities were found for participants depending on their age, type of disability, location, and whether they were experiencing unmet demand for services. These factors should be studied in further detail to guide the development of the NDIS and ensure that the NDIS also improves the wellbeing of particularly vulnerable groups.
6.5.2 Wellbeing of families and carers – Evidence from large scale surveys
While the wellbeing of families and carers was much higher than that of the NDIS participants that they care for, their reported wellbeing was still well below the average for Australia. Levels of wellbeing decreased slightly over time in the NDIS.
Carers have very high satisfaction with some aspects of their lives (e.g. with their relationships to the relevant service providers and with the support provided to people with disability to make progress at home). At the same time they have high dissatisfaction with other aspects of their lives (e.g. with family support necessary to relieve stress, availability of outside help to take care of the special needs of all family members, time of family members to pursue their own interests, and having friends or others who provide support).
While the proportion of carers experiencing at least one indicator of financial hardship declined over time (from 42 per cent to 36 per cent), this still represents a large proportion of carers of NDIS participants reporting financial stress.
The estimated impact of the NDIS on the wellbeing of carers of adult participants was very small and not statistically significant. This suggests that the NDIS has not had a direct effect on the wellbeing of this group.
For the carers of participants aged 8-15 years it was found that the NDIS has had a small, but statistically significant negative impact on their wellbeing.
These findings suggest that the NDIS is not leading to improvements in the wellbeing of families and carers. It is essential that ongoing evaluation and monitoring occurs to assess the future impact of the NDIS on their levels of wellbeing and to identify the factors contributing to reduced wellbeing.
6.5.3 Wellbeing of people with disability and their families and carers – Evidence from in-depth qualitative interviews
An overall increase in wellbeing was reported by NDIS participants. Many respondents described evidence of improved skills and developmental progress as a result of the NDIS. This included increased participation in social and recreational activities, being able to do activities that had hitherto been unavailable or inaccessible, and observable happiness in being able to be more active.
Families and carers often reported an increased sense of positivity and wellbeing as a result of the NDIS participant being more involved in activities they enjoyed (including participation in wider interests outside of the home).
Reduced financial strain and more opportunity for self-care and to spend time with other family members also improved carer wellbeing.
Many carers reported that the NDIS had given them some control over the future in terms of setting up plans, activities and supports for the person they cared for. However, there were also high levels of ongoing anxiety related to the longer term sustainability of the NDIS.
Participation (Social, Economic and Educational), and Aspirations (Goals)
Integrated findings
This section integrates and summarises the quantitative and qualitative findings relating to participation (social, economic and educational), goals and aspirations, and transitions.
The evaluation finds that:
there is no large-scale evidence that the NDIS has already impacted on the social participation of people with disability, but an abundance of qualitative evidence is suggesting that change is occurring;
There is some evidence that families and carers are already enjoying enhanced social participation opportunities due to the NDIS, but also that some carers had given up their careers altogether and others were working part-time in order to provide care;
Persistent barriers prevent social participation, including cost, access, transport and communication;
there are additional challenges regarding social participation for specific types of disability;
there is no large-scale evidence that the NDIS has already improved educational and economic participation, but there is evidence that both education and work are prime objectives and in the plans of many people with disability and their families and carers;
there are persistent barriers for both education and work activities and there is no evidence that these barriers were being overcome during the course of the evaluation;
educational participation was high at the start of the evaluation, but appeared to decline over the duration of the evaluation;
a third of people with disability were actively seeking work, but few get jobs: severe barriers were identified by both sources of evidence;
more is needed to open up labour market opportunities for people with disability;
there is a broad recognition that participation activities often take time to yield concrete results;
on the whole, there is very little large-scale evidence regarding the impact of the NDIS on all types of participation, but given the long leads involved in these activities, this is not a surprising finding;
in contrast the NDIS has been influencing the building of aspirations and the setting of goals regarding social participation, social skills and educational participation, but less so regarding economic participation; and
the NDIS has been providing support for important transitions and life change during the course of the evaluation.
Social participation
Mixed results were found in the quantitative and qualitative evidence as to the impact of the NDIS on the social participation of people with disability and their families and carers.
No significant differences in the social participation of NDIS and non-NDIS participants were found in the quantitative evidence. The quantitative data indicated that the most frequently reported activities undertaken by both NDIS participants and their family members and carers was spending time with family and friends. The most desired activity to be undertaken in the future for both groups was to go on a holiday. Furthermore, little change was observed in patterns of social participation with longer time spent in the NDIS.
In contrast, the qualitative interviews provided evidence that engagement in social and everyday activities was increasing for NDIS participants. Many NDIS participants were now able to take part in activities independently (i.e. without the support of a family member), were able to have access to support when needed, were able to follow interests and social activities that had previously been inaccessible, and were able to visit friends and family or having people to stay.
Qualitative interviews also found that, as a consequence of increased service provision for the NDIS participant, family members and carers also enjoyed enhanced opportunities for social participation, including spending quality time with family and friends.
However, both quantitative and qualitative evidence identified persistent barriers which prevented the social participation of NDIS participants. Barriers to social participation identified in the quantitative evidence included the cost of activities, access to buildings, transport and communication issues.
The qualitative interviews highlighted the additional challenges faced by people with mental health issues, intellectual disability or Autism Spectrum Disorder in participating in social activities and developing friendships. A need for better community engagement to improve the integration and acceptance of people with disability in mainstream activities was also highlighted in the qualitative interview evidence.
Educational participation
As with social participation, the quantitative evidence found that the NDIS has not had a significant impact to date on the educational participation of people with disability or their families and carers. While the quantitative evidence showed that a relatively high proportion of NDIS participants were currently studying, this proportion decreased over the duration of the evaluation. For most of the NDIS participants in education, their primary objective after their current study was completed was to get a job or to undertake further training or education.
Of those NDIS participants not currently in education, around a fifth would like to study in the future. However, barriers to educational participation were reported including the health/disability of the NDIS participant, opportunities for study and difficulties with transportation, facilities and equipment. There was little evidence that these barriers were being broken down over time.
Very few family members and carers of NDIS participants were studying at either wave 1 or 2.
Economic participation
Both quantitative and qualitative evidence indicated that levels of economic participation were low for NDIS participants and did not change over time. The quantitative evidence found that around a fifth of NDIS participants were in employment in both waves 1 and 2. Most were in part-time employment with a growing proportion employed in an Australian Disability Enterprise.
While the quantitative evidence indicated that many NDIS participants express a preference to work, only around a third were actively seeking employment. Severe barriers to the labour force participation of people with disability were evident in the quantitative and qualitative data. These barriers were similar to those adversely impacting upon educational participation and did not appear to be reducing over time. The qualitative interviews concluded that in addition to the development of job-readiness skills, more liaison with employers needed to occur to improve labour market opportunities for people with disability.
The qualitative evidence suggested that while over time there was an increase in participation in employment-related activities including volunteer work, work experience, supported employment and paid work, only a few NDIS participants reported undertaking these activities. Increased economic participation amongst people with disability was considered a long term process, with time needed to develop job-readiness skills, create programs to support both participants and employers, and to change cultural beliefs about employability and opportunities for employment for people with disability. It was argued that more needed to be done to develop effective guidance, supports and linkages to employers in order to open up labour market opportunities for people with disability.
Both the quantitative and qualitative evidence showed that caring responsibilities impacted upon the ability of family members and carers to take part in paid work and on their career pathways more generally. Both data sources indicated that some carers had given up their careers altogether and others were working part-time in order to provide care and support to the person with disability.
Mixed evidence was found as to the impact of the NDIS on the economic participation of family members and carers. The quantitative data identified no significant impact of the NDIS on the employment of family members and carers. In contrast, the qualitative evidence showed that some positive changes were beginning to occur; by wave 2 a few examples were provided of family members and carers being able to seek work or increase their working hours as a result of greater levels of funded support received by the person they cared for.
Goals and aspirations
The qualitative data provided evidence about the goals and aspirations of NDIS participants and whether these had been achieved over time in the NDIS. The goals and aspirations of younger NDIS participants were primarily related to developmental progress and education. For adult participants, goal and aspirations centred on education, work, developing independence and increasing social skills. By the wave 2 interviews, while progress had been made towards educational goals, limited achievement of goals relating to economic participation was observed.
Transitions
The qualitative interviews showed that almost all of the NDIS participants and their families and carers had experienced a transition or life change between waves 1 and 2. These were primarily related to educational transitions, health and behavioural issues, and changes in accommodation. In general, the NDIS was reported to have assisted participants through these processes and support plans were adapted to reflect their new circumstances.
