The wellbeing of the carers of people with disability is a major focus of the NDIS. Their opinions are well informed and very important for the successful care and support of people with disability. The wellbeing of carers were captured using two measurement tools- the OECD psychological measure of wellbeing and the Deakin wellbeing index PWI.
6.3.1 Psychological (Eudaimonic) wellbeing measure - statements by people about themselves and how they feel (OECD 2013).
Overall, responses of the carers of NDIS participants to the six measures of wellbeing range from 4.6 to 7.8 in wave 1 and 4.6 to 7.7 in wave 2 (Appendix Table A6.18).
As with people with disability, two broad comparisons are of interest.
The first comparison is between wave 1 and 2 levels of wellbeing. Wellbeing increased very slightly for two facets, ‘In general, I feel very positive about myself’ and ‘I get a sense that I have achieved something’, and remained unchanged or decreased for all others. Overall, however, carers wellbeing seems to have changed little as a result of the NDIS.
The second type of comparison is between different subgroups and circumstances. Wellbeing levels relating to how much control carers report to have over how they spend their time were compared (Appendix Tables A6.19 – A6.24). Wellbeing across all domains is negatively associated with a lack of perceived control in both waves 1 and 2.
The wellbeing of carers who reported no control over their time in wave 1 declined further by wave 2. For all other groups there has been a general increase or no change in wellbeing over time.
6.3.2 Australia Unity PWI - questions about how happy people with disabilities feel about things in their lives (International Wellbeing Group 2013)
Respondents are asked to report how they have been feeling this week on a series of seven questions, each corresponding to a particular life domain: standard of living, health, achieving in life, relationships, safety, community-connectedness, and future security. Answers are on a scale of 0 – 10 (0 is ‘very unhappy’ and 10 is ‘very happy’). The answers were then aggregated to provide an overall personal wellbeing index (PWI).
Figures 6.9 and 6.10 below display the mean PWI for carers of NDIS participants in wave 1 and 2 by the amount of control they report to have over their time; the corresponding 95 per cent confidence intervals are also shown. Carers overall had a mean wellbeing index of 70.7 in wave 1. Wellbeing decreased slightly over time with carers recording a PWI of 69.7 in wave 2.
While carers wellbeing is much higher than that of the NDIS participants that they care for, their reported PWI is still well below the average for Australia (which sits at around 75).
When we consider the result by the amount of control carers have over their time we see that carers with no control are extremely low on the PWI in both waves 1 and 2 (and well below the ‘minimum threshold’ of 60 as defined by Australia Unity). Carers who have only a little control over their time are also at risk with their PWI falling to just below 60 in wave 2.
Among these groups, despite the introduction of the NDIS very little control was realised over their own time, which as we see here comes at high cost in terms of their wellbeing. It will be essential for ongoing independent evaluation and monitoring to assess whether the NDIS improves the personal wellbeing of these carers.
Figure 6.9 Carers: Australia Unity PWI (mean and 95 per cent confidence intervals) by carer’s control over own time, (Trial, wave 1)
Figure 6.10 Carers: Australia Unity PWI (mean and 95 per cent confidence intervals) by carer’s control over own time, (Trial, wave 2)
Carers were also asked a series of questions to rate their level of satisfaction with various aspects of their life (Appendix Table A6.25).
In both waves 1 and 2, the majority of carers in the trial sites were either satisfied or very satisfied with the various aspects of their lives they are asked to report on. However, there is diversity. We note that a significantly large proportion of carers report to be either dissatisfied or very dissatisfied with certain aspects of their lives relating to the amount of support family and carers can count on. In particular, more than 20 per cent of carers in both waves 1 and 2 reporting to be dissatisfied or very dissatisfied with (i) family support necessary to relieve stress, (ii) availability of outside help to take care of the special needs of all family members, (iii) time of family members to pursue their own interests and (iv) having friends or others who provide support. This suggests that for a significant proportion of families and carers, activities centred around caring for the person with disability can be an all-consuming part of their lives, and one where the ability to rely on additional support from others is needed but often lacking.
Another measure of wellbeing included in the NDIS Survey is financial hardship (Appendix Table A6.26). This question asked about seven separate indicators that could be taken as potential manifestations of financial hardship.
In wave 1, 42 per cent of the carers of NDIS participants surveyed reported that they experienced at least one indicator of financial hardship over the last 12 months. The financial hardships most commonly reported was that a carer or family member could not pay bills on time (25 per cent) and having to ask for financial help (25 per cent).
In wave 2, the proportion of carers reporting that they experienced at least one indicator of financial hardship over the last 12 months declined to 36 per cent. However, this still represents a large proportion of carers of NDIS participants reporting financial stress. With the exception of family members being unable to heat their home, there was a general decline in the proportion of carers nominating each of the remaining indicators of financial hardship.
6.2.3 The impact of the NDIS on wellbeing (families and carers)
Further analyses were undertaken to estimate the impact of the NDIS on the wellbeing of carers. The raw difference in wellbeing found between carers of NDIS participants and carers of people with disability not participating in the NDIS was very small, with the mean score for each group being a little over 70 (on a scale of 0 to 100). Our estimations of the impact of the NDIS on the wellbeing of the families and carers of people with disability aged 16+ found the impact to be very small (0.36 points) and not statistically significant (Appendix Tables A6.27 and A6.28). This suggests that the NDIS has not had a direct effect on the wellbeing of the families and carers of people with disability, as measured by the PWI. For the carers of people with disability aged 8-15 years it was found that the NDIS has had a small, but statistically significant negative impact on the wellbeing of families and carers (Appendix Tables A6.29 and A6.30). Both wellbeing measures (the PWI and OECD tools) led to the same results for carers of both age groups.
The family quality of life outcomes for families and carers
Several aspects of quality of life were then examined, comparing carers in the NDIS trial group with the comparison group. The third column of Table 6.1 below sums up the main differences between trial and comparison groups in terms of wellbeing.
Table 6.1 Carers: Summary of estimation outcomes on family quality of life – Trial vs. Comparison
Variable
Question
Outcome
Famsat1
‘Your family has the supports it needs to relieve stress’
Trial better off
Famsat2
‘Your family has outside help available to you to take care of the special needs of all family members’
Trial better off
Famsat3
‘Family members have some time to pursue their own interests’
About the same
Famsat4
‘Family members have friends or others who provide support’
About the same
Famsat5
‘Person with disability has support to accomplish goals at school or at work’
Trial much better off
Famsat6
‘Person with disability has support to make progress at home’
Trial much better off
Famsat7
‘Person with disability has support to make friends’
Trial better off
Famsat8
‘Your family has good relationships with the service providers who provide services and support to him/her’
Trial much better off
Estimates of the impact of the NDIS on each of these quality of life statements are now presented (with detailed estimates contained in Appendix Graph A6.1 to Graph A6.10). First the average estimates for carers of people with disability aged 16+ years are shown in Figure 6.11.
The mean estimated impacts of the NDIS on each of the quality of life outcomes of families and carers in the NDIS ranges from four per cent to 12 per cent. The highest impact of the NDIS related to whether the person with disability they care for has support to accomplish goals at school or at work. The impact of the NDIS was also high for satisfaction with accessing outside help to take care of the special needs of all family members (an estimated impact of 11 per cent) and their relationship with disability service providers (10 per cent).
The results on the quality of life outcomes of families and carers of children aged 8-15 years paint a very different picture (Figure 6.12). The estimated treatment effects are statistically significant for only three of the eight measures of family quality of life, namely (i) ‘your family has good relationships with the service providers’ with a positive estimated impact of the NDIS of nine per cent (very similar to the effect estimated for the carers of adults), (ii) ‘family members have some time to pursue their own interests’ with a negative estimated impact of the NDIS of seven per cent which is at odds with the results obtained on the carers of adults (+6 per cent), and, (iii) ‘family members have friends or others who provide support’, with a small negative estimated impact (-5 per cent).
Figure 6.12 Carers: Satisfaction with family quality of life, Estimated ATETs (Trial, Age 8-15)
Carers of people with a mental/psychosocial disability systematically experience a smaller positive impact of the NDIS. In Figure 6.13 we superimpose the estimated NDIS impacts for each family wellbeing indicator for those caring for a person with a mental/psychosocial disability (the orange dots), and for those caring for a person with any other disability type (the blue dots).16
Overall the impact of the NDIS on the quality of life of those caring for a participant with a mental/psychosocial disability were lower. Only with regard to (i) satisfaction with the family having good relationships with the service providers, and (ii) satisfaction with the family members having time to pursue their own interests was the impact of the NDIS greater for carers of a person with a mental/psychosocial disability compared to those caring for a person with another type of disability.
The largest differences in NDIS impacts are estimated for the statement ‘family having outside help available to take care of the special needs of all the family members’ with more than 10 percentage points (11 per cent versus one per cent), and in the ‘family having the supports it needs to relieve stress’, at six percentage points (five per cent versus -1 per cent).
Figure 6.13 Carers: Impact of the NDIS on family quality of life by mental/psychosocial vs. all other disabilities (Trial)
