Evaluation of the consumer - directed care initiative - Final Report
7.3 Extent to which CDRC enhanced community-based care
Table of contents
- Executive summary
- Glossary
1 Introduction- 2 The consumer-directed care initiative
- 3 Evaluation of the consumer-directed care initiative
- 4 Profile of participants and the supports they accessed
- 5 Implementation and operation of the initiative
- 6 Impact of the initiative for CDC participants and their carers
7 Impact of the initiative for CDRC participants and the people they care for- 8 Impact on providers and the broader service system
- 9 Cost assessment and cost-effectiveness of the initiative
- 10 Key findings
- 11 Lessons learnt and strategies for consideration
- Appendices
- References
Impact on quality of care
While there was a high degree of satisfaction with the quality of supports that participants and the people why cared for received, it needs to be noted that the majority of participants were receiving low-level or no supports prior to commencing a CDRC package. This meant many participants had no point of comparison. Further, the level of resources available to them is likely to have influenced their perspectives of ‘quality’.As for CDC, CDRC participants considered that their ability to choose the supports they accessed and their ability to control and influence the way supports were provided to better suit the carer’s (and care recipient’s) needs had a positive impact on the quality of supports. A number of participants highlighted the choice of support worker as particularly important, as well as the freedom to choose supports that the person they care for was happy with. A number of participants highlighted the fact that they were now able to access supports other than residential respite, which was often cited as being of poor quality and in some cases upsetting and even traumatic for the person they cared for.
There was a considerably greater level of satisfaction with the quality of supports received by the CDRC group compared with the NRCP comparison group, as illustrated in the table below.
Table 35: Overall, I am satisfied with the quality of respite services I receive
CDRC | Comparison | |
|---|---|---|
| Strongly disagree | 1% | 4% |
| Disagree | 2% | 4% |
| Neither agree nor disagree | 2% | 9% |
| Agree | 37% | 45% |
| Strongly agree | 55% | 31% |
Based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDRC and comparison group surveys, conducted August 2011.
Assisting participants to achieve their personal goals
As noted earlier, CDRC had a strong goal focus and the majority of providers used a ‘goal-oriented’ approach to planning. Participants goals were relatively simple, such as having regular time for themselves (a day each week, or a few hours each day), or to spend more time with or visit family and friends. For most participants, their goals were much more than simply ‘having a break’ from caring.Some carers found it difficult to know what they needed and wanted, and took time to get used to the idea that the package was about them and to identify what they needed/wanted. This was particularly the case for participants who were older and participants who had been in a caring role for a long period of time. Younger carers and those who had not been in the caring role for very long were more definite about what they wanted.
Almost without exception, participants felt that the package enabled them to do some of the things they wanted to do or achieve: 53 per cent of CDRC survey respondents were much more satisfied with their ability to achieve the things they wanted to achieve compared with six months prior, compared to only 20 per cent of the NRCP comparison group. This is illustrated in the table below.
Table 36: Compared to six months ago, how satisfied were you with your ability to achieve the things you want to achieve?
Response | CDRC | Comparison |
|---|---|---|
| Not satisfied | 3% | 13% |
| Somewhat less satisfied | 3% | 15% |
| No different | 14% | 35% |
| Somewhat more satisfied | 23% | 20% |
| Much more satisfied | 53% | 13% |
Based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDRC and comparison group surveys, conducted August 2011.
Impact on quality of life, health and wellbeing
There was clear evidence that CDRC had a considerable positive impact on carers’ participation in social and community activities, their home life and close relationships, level of independence, their health and wellbeing, and their capacity to continue in their caring role.“CDRC has given me a new sense of freedom – it makes a big difference to know if something comes up that I want to do, I can actually do it.”
CDRC participant aged in her 40s
It needs to be noted that during 2010-11, participants had access to a full annual package amount ($4,200) – to be spent in six months or less. This enabled participants to access supports at greater levels than would be possible if they had a package over a full year, and this is likely to have had an impact on the scale of benefits experienced by CDRC participants during the period of this evaluation. However, it should also be noted that the benefits experienced by participants were evident in a relatively short time period following commencement.
Capacity to continue in their caring role
Many participants felt that their capacity to continue in their caring had increased since commencing on the package, and for many having a package gave them a chance to put energy back into their caring role. Participants also felt more valued and recognised as carers (many for the first time), and an increased sense of self from being able to focus on themselves and their lives rather than only on the people they care for.Independence
A number of participants also spoke about an increased level of independence, and ability to do the things they wanted and needed to do without being overly burdened by their caring role, or feeling guilt or regret when they did things for themselves.Compared with the NRCP comparison group, there was a increased level of satisfaction among CDRC participants with their level of independence (58 per cent somewhat more satisfied or much more satisfied with their level of independence compared with six months prior). This was considerably higher than the NRCP comparison group where levels of satisfaction were low (24 per cent somewhat more satisfied or much more satisfied). This is illustrated in the table below.
Table 37: Compared to six months ago, how satisfied were you with your level of independence?
Response | CDRC | Comparison |
|---|---|---|
| Not satisfied | 3% | 13% |
| Somewhat less satisfied | 5% | 18% |
| No different | 29% | 45% |
| Somewhat more satisfied | 36% | 15% |
| Much more satisfied | 22% | 9% |
Based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDRC and comparison group surveys, conducted August 2011.
Participation in social and community activities
Participants identified that they were more able to participate in social activities, including spending time with friends, attending classes or regular club events, and spending more time on recreational activities (such as the theatre/cinema, sporting events, going to church), and being able to do things during weekends. Many participants were able to ‘rediscover’ activities that they enjoyed but had been unable to do because of their caring role.There was an increased level of satisfaction among CDRC participants who responded to the survey with their ability to participate in social and community activities compared with six months ago (with 63 per cent somewhat more satisfied or much more satisfied compared with six months prior). This was considerably higher than the NRCP comparison group where levels of satisfaction were low (30 per cent somewhat more satisfied or much more satisfied). This is illustrated in the table below.
Table 38: Compared to six months ago, how satisfied were you with your ability to participate in social and community activities?
Response | CDRC | Comparison |
|---|---|---|
| Not satisfied | 3% | 16% |
| Somewhat less satisfied | 8% | 15% |
| No different | 20% | 36% |
| Somewhat more satisfied | 28% | 25% |
| Much more satisfied | 35% | 5% |
Based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDRC and comparison group surveys, conducted August 2011.
Relationships
A number of participants also identified that having a package improved the relationship not only with the person they cared for, but also with members of their own immediate family and other significant people in their lives, such as siblings, their children and grandchildren, and in some cases their partner. In part this was due to being able to spend more time with their family and other significant people in their lives, but also because the package gave them a ‘lift’ and increased their level of wellbeing and life satisfaction – given them renewed energy and motivation to dedicate to their close relationships.“My grandchildren would call and ask me to do things. I’d always have to say no. One day, one of them called me up and said ‘oh I suppose you can’t come again Nan’, but this time I could come! They were so excited, and I was too.”
CDRC participant aged in her 70s, who had been caring for her husband for 10 years
From survey responses, it is clear that there was a higher level of satisfaction among CDRC participants compared with NRCP recipients with the quality of their home life and the extent to which they could visit family and friends:
- 58 per cent of CDRC respondents were somewhat more satisfied or much more satisfied with the quality of their home life and close relationships compared with six months prior, though only 29 per cent of the NRCP comparison group were somewhat more satisfied or much more satisfied.
- 55 per cent of CDRC respondents were somewhat more satisfied or much more satisfied with the extent to which they were able to visit family and friends compared with six months prior. Only 29 per cent of the NRCP comparison group indicated that they were somewhat more satisfied or much more satisfied, and for a third there was little difference.Top of page
Table 39: Compared to six months ago, how satisfied were you with the quality of your home life and close relationships?
Response | CDRC | Comparison |
|---|---|---|
| Not satisfied | 5% | 11% |
| Somewhat less satisfied | 5% | 16% |
| No different | 27% | 42% |
| Somewhat more satisfied | 32% | 20% |
| Much more satisfied | 26% | 9% |
Based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDRC and comparison group surveys, conducted August 2011.
Table 40: Compared to six months ago, how satisfied were you with the extent to which you were able to visit your family and friends?
 | CDRC | Comparison |
|---|---|---|
| Not satisfied | 3% | 15% |
| Somewhat less satisfied | 2% | 13% |
| No different | 33% | 44% |
| Somewhat more satisfied | 28% | 18% |
| Much more satisfied | 27% | 9% |
Based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDRC and comparison group surveys, conducted August 2011.
Health and wellbeing
There is evidence that CDRC also had an impact on participants’ health and wellbeing. Some participants interviewed stated that that their physical health had improved, given they were able to use their package for activities with direct health benefits (such as gym memberships, Pilates and yoga classes), and for respite supports to enable them to participate in these activities. The main impact, however, was on carers’ mental and emotional health and sense of wellbeing. Participants identified decreased levels of stress, resentment, and depression, a more positive outlook on life and renewed energy and vigour.“For so long I knew what I needed to do every day. Suddenly, I could do other things, different things. I had something to look forward to”.
Long-term carer
This is reflected in survey results. Half of CDRC respondents were somewhat or much more satisfied with their general health and wellbeing compared to six months prior – considerably higher than the NRCP comparison group (16 per cent). This is illustrated in the following table.
Table 41: Compared to six months ago, how satisfied were you with your general health and wellbeing?
Response | CDRC | Comparison |
|---|---|---|
| Not satisfied | 3% | 11% |
| Somewhat less satisfied | 8% | 36% |
| No different | 36% | 36% |
| Somewhat more satisfied | 30% | 11% |
| Much more satisfied | 20% | 5% |
Based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDRC and comparison group surveys, conducted August 2011.
Measure of wellbeing
As for the CDC and packaged care comparison group surveys, the CDRC and respite comparison group surveys also included a partial measure of outcome – the ICECAP-O wellbeing measure.23The median ICECAP-O scores for the CDRC and respite comparison group are outlined in the table below. As the table shows, the CDRC group scored marginally higher than the respite comparison group, indicating slightly higher wellbeing in the CDRC group, though these differences were not statistically significant.24
Table 42: ICECAP-0 wellbeing tool – average scores
CDRC | Comparison | |
|---|---|---|
| Median score | 0.76 | 0.71 |
A score of 1 is the maximum wellbeing score, and a score of 0 the minimum.
Source: CDRC and comparison group surveys, conducted August 2011. Scores are based on responses received from 92 CDRC participants and 55 NRCP (comparison group) recipients. Note that respondents who did not complete all five items have been excluded.
Key points – Enhancing community-based care
- Even after a short period of operation, CDRC had a considerable positive impact on carers. Many participants felt that their capacity to continue in their caring had increased since commencing on the package, and for many having a package gave them a chance to put energy back into their caring role.
- Almost without exception, participants felt that the package enabled them to do many of the things they wanted to do or achieve.
- There was a considerable positive impact on carers’ participation in social and community activities, their home life and close relationships, level of independence, and health and wellbeing. Participants also experienced an increased ‘sense of self’, and a sense of greater wellbeing. However, using a validated measure of wellbeing, there was no statistically significant difference between the CDRC participant group and carers accessing supports through NRCP.
- It needs to be noted, however, that during the period of the evaluation participants had access to a full annual package amount ($4,200) – to be spent in six months or less - and this is likely to have had an impact on the scale of benefits experienced by CDRC participants.
23. The ‘ICEpop CAPability measure for Older people’ (ICECAP-O) is a validated measure of wellbeing in older people. The ICECAP-O tool uses a definition of wellbeing which is broader than most other measurement tools (which focus on health and/or functional capability), and covers five attributes of wellbeing that were found to be important to older people in the UK: Attachment (love and friendship), Security (thinking about the future without concern), Role (doing things that make you feel valued), Enjoyment (enjoyment and pleasure), Control (independence). The ICECAP-O tool provides a single wellbeing score (between 0 and 1) for each individual completing the five-question tool.
Source: http://www.icecap.bham.ac.uk/ICECAP-O/index.shtml, accessed September 2011.
24. using the Mann-Whitney test for non-normally distributed data, p=0.05
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