Evaluation of the consumer - directed care initiative - Final Report

6.3 Extent to which CDC was person-centred and increased choice and control

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The extent to which CDC was person-centred and increased participants’ choice and control encompassed the following aspects:

• participants’ involvement in planning and decision-making
• extent of participant choice of supports and support providers
• participants’ ability to make informed choices
• extent of participant control over the supports they received.

Involvement in planning and decision-making

Nature of involvement in care planning and budget planning processes

As described in chapter 3, most participants were involved in a series of face-to-face discussions with a coordinator to determine their level of interest in CDC and their capacity to be involved in CDC. They also discussed their needs, and in some cases what they wanted to achieve from their package.

There were a range of views expressed by participants about their involvement in planning and decision-making. Participants who had been on a standard package were relatively uninterested in the planning aspects of CDC, particularly if they were satisfied with their current support arrangements or wanted to make only minor changes, and particularly if they had transferred from a CACP to a CDCL package. For this group, planning was rarely ‘from scratch’, and generally not goal-based. The majority of new CDCL participants were focussed on the supports that they could access – similar to new standard package recipients.

A number of participants commented that they relied on their coordinator to make suggestions and provide options relating to different types of supports and support arrangements. Decisions about which supports they needed, their support providers, and support arrangements (such as days and times a support worker would come to their home) were generally made with assistance or advice from the CDC coordinator. The relationship with their coordinator was considered to be important by many participants and carers.

CDCH and CDCHD participants, and specifically their carers, appeared to be more actively involved in planning and decision-making, and some participants and carers (usually younger carers) with prior experience of community care had clear ideas about what they wanted in terms of supports. This was driven to some extent by dissatisfaction with their previous package.

Once the supports were in place, the level of contact with the CDC coordinator would taper off to regular ‘check ins’ and monitoring, usually by phone rather than face-to-face. The extent to which this did happen varied: some participants and older carers indicated a relatively high level of ongoing contact with and coordination by the CDC provider.

"(The coordinator) is really committed and wants to help me keep Mum at home and care for her the way I want her cared for. (The coordinator) has gone the extra mile – she found about all these other services, things like music therapy and massage, and suggested we could try some of those as part of the package, to help manage Mum’s behaviour."

Carer of CDCHD participant
aged in her 50s

Level of satisfaction with involvement in care planning and budgeting

The majority of CDC participants and carers were satisfied or very satisfied with their level of involvement in planning and decision-making, and the majority of participants felt their needs were taken into account. However, there was a degree of dissatisfaction with some providers, and in particular relating to their perceived inflexibility regarding what a package could be used for.

Overall, the survey showed that 91 per cent of CDC participants and carers agreed or strongly agreed that they felt included in the care planning and decision-making process. Interestingly, only a slightly lower proportion of people in the comparison group (86 per cent) also agreed or strongly agreed that they felt included in the care planning process (table B.6 in Appendix B refers).

Similarly, 95 per cent of CDC participants and carers agreed or strongly agreed that their needs and goals were taken into account during the care planning process. A similar proportion of people in the comparison group (92 per cent) also agreed or strongly agreed that their needs and goals were taken into account (table B.7 in Appendix B refers).

There were some differences between care levels, as illustrated in the tables below. The tables show that:

• The level of agreement with the statement ‘I felt included in the process of planning my care services’ was broadly similar for CDCL and CACP comparison group respondents. However, a higher proportion of CDCH participants agreed with the statement compared with the EACH comparison group.
• A much greater proportion of CDCH participants (53 per cent) strongly agreed with the statement ‘my needs and goals were taken into account in the planning of my care and services’ compared with EACH comparison group respondents (14 per cent). This was not the case for CDCL participants.Top of page

Table 12: I felt included in the process of planning my care services

	CDCL	CACP	CDCH	EACH
Strongly disagree	0%	0%	0%	3%
Disagree	1%	0%	0%	0%
Neither agree nor disagree	4%	4%	0%	7%
Agree	56%	55%	53%	62%
Strongly agree	35%	39%	47%	21%

Based on responses received from 124 CDC participants and 126 standard packaged care (comparison group) recipients. ‘Don’t know’, multiple and blank responses have not been reported in this table.
Note that there were insufficient responses CDCHD and EACHD recipients to be included in the analysis
Source: CDC and comparison group surveys, conducted August 2011.

Table 13: My needs and goals were taken into account in the planning of my care and services

	CDCL	CACP	CDCH	EACH
Strongly disagree	0%	0%	0%	0%
Disagree	1%	0%	0%	3%
Neither agree nor disagree	1%	1%	0%	3%
Agree	60%	51%	47%	76%
Strongly agree	35%	45%	53%	14%

Based on responses received from 124 CDC participants and 126 standard packaged care (comparison group) recipients. ‘Don’t know’, multiple and blank responses have not been reported in this table.
Note that there were insufficient responses CDCHD and EACHD recipients to be included in the analysis
Source: CDC and comparison group surveys, conducted August 2011.

Respondents with no prior experience of packaged care had a slightly higher level of satisfaction with the degree to which they felt included in the planning process, and the degree to which their needs and goals were taken into account, compared with those who had transferred to CDC from a standard care package (tables B59-60 in Appendix B refer).

Budgeting

There were varying levels of interest in the budgeting aspects of CDC. Generally, CDCL participants did not express a high level of interest in the budget planning or ongoing budget monitoring (including monthly statements), other than knowing whether their package was over or under-spent, and participants often left the budgeting aspects of planning to their coordinator.

CDCH participants and carers of CDCH and CDCHD participants expressed more interest in budget planning and monitoring, and in the costs of supports. A number of people indicated that the transparency of the budgeting and transparency of support costs was an important aspect of CDC: it provided them with important information to use in choosing supports and support providers, to plan for future events (and build up contingencies), and to some extent gave them reassurance that the person they cared for was receiving full value from the package.¹⁶

Many participants and carers were interested in the capacity to accrue contingency funding or surplus funding (though the extent to which this was permitted depended on individual provider approaches). Having the capacity to accrue contingency funding was identified as an important aspect of the CDC model because it allowed participants and carers to more effectively plan for the future and provided important reassurance to participants and carers that they had funds available should their needs or circumstances change. There was a greater level of interest among CDCH and CDCHD participants and carers, where the scope to accumulate contingency or surplus funding was greater than for CDCL, though some CDCL participants also highlighted the benefit of building up a contingency fund.

A small number of participants interviewed were unsure about whether they had been provided with a breakdown of how their package had been allocated, and some indicated that they had not seen any regular budget statements outlining how their package had been spent and the funding left to spend.

"I should have full control of the budget. Yes, there need to be safeguards. You could park the funds with an independent financial intermediary (not an aged care provider). You could be supervised for a period until you’re shown to be competent. After that, you should be able to run it all yourself and use the administration funds to buy more care hours."

Carer of CDCH participant
aged in her 40s
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Extent of participant ‘choice’

The interviews suggested that the majority of CDC participants and carers were satisfied with their level of choice and options in relation to supports, though there were some participants who did express dissatisfaction.

For the most part, the supports people chose were similar to those available under standard packaged care and largely focussed on core services. The extent to which they were offered real choice by providers depended on the provider’s approach to planning, the extent to which they provided information on what supports were available and from whom, and the cost of those supports. There was some evidence of a degree of participant and carer dissatisfaction and frustration with the choices they had – particularly when they requested (and were denied) services which were not consistent with the ‘usual menu’ of community aged care supports.

"Don’t get me wrong, CDC is better than EACHD, but it does not really give you choice or control. It’s still inflexible and bureaucratic. I want to use some of the funds for things like help with ironing, or taking Dad to the club now and then – which he would really love – but the answer is always ‘no’. Why shouldn’t we be able to do those things?"

Carer of CDCHD participant
Several CDC providers had concerns about balancing the consumer choice element of CDC with the provider’s duty of care. Several providers gave examples of requests by participants or carers for use of CDC funds that they had refused, primarily because they considered that the request was not an appropriate use of funds or because the request would compromise the participant’s care (for example, reducing the amount of personal care or clinical care a participant could use). Other providers were also concerned by participants choosing to build up a sizeable contingency fund by foregoing some regular supports. While providers discussed and negotiated alternatives, this highlighted one of the key tensions in the CDC model.

There were some examples of creative and innovative uses of package funds, though perhaps not to the same extent as for CDRC.


The proportion of CDC participants who were satisfied with the range of services that they could choose was not considerably different from the standard packaged care comparison group (table B.43 in Appendix B refers). In fact, the level of satisfaction of the CDC group was slightly lower than the comparison group.

Similarly, there were no clear conclusions about levels of satisfaction with the range of services participants could choose – either between CDC participants on different package levels, or between CDC participants with previous packaged care experience and those who were new to packaged care (Table B.61 refers).

Ability of participants to make informed choices

The majority of participants and carers interviewed considered that they had enough information to make decisions – although a number of generally older participants and carers suggested that there was too much information for them to process.

One area where participants wanted more information related to the restrictions and limitations placed on the use of their package. Some participants and carers were frustrated when their provider refused requests for specific supports, services or goods – generally those which were not ‘traditional’ supports funded through standard packages¹⁷ – particularly where there was insufficient information about why the requests were inappropriate. It was clear during the provider interviews that providers took very different approaches to the same kinds of requests – with some providers more open to specific services or goods that other providers would refuse to consider.

The survey results suggest that most participants and carers felt they had enough information overall to make informed choices. However, it should be noted that 12 per cent of participants and carers disagreed or strongly disagreed that they had enough information about types of services available, or the costs of services. This was also reflected in the interviews.Top of page

Extent of participant ‘control’

There was evidence that participants and carers exercised a level of control over how supports were provided, including the hours of care, service times, service frequency, access to services and care in the evening and weekends, and tailoring of supports around participant and carer preferences and schedules. In addition, a number of participants stated that they were able to choose their support workers and to trial a few support workers until they found one they liked.

Participants indicated that having this control and flexibility was the key benefit of CDC, and for those with prior community care experience, this was the key differentiator of the CDC approach from standard packaged care. However, there was also a degree of dissatisfaction with some CDC providers who were not flexible and responsive to participants’ preferences and requests. Again, the degree of control and input a participant had regarding their supports differed across providers, either because of inflexibility on the part of the provider, or a lack of understanding or awareness on the part of the participant that they could have this control or influence.

"They were very good about giving you information on which providers you could use and how much they cost. I felt like I had enough to go on, but to be honest I was never sure how much choice there really was. I just went with the options that allowed me to get the most out of the package."

CDCL participant
aged in her 70s
A number of participants and carers with prior experience of community care said that they felt much more empowered to ask for changes to their support arrangements under the CDC model, such as a change in support worker. Some of these participants and carers indicated that, under standard packaged care, they had felt fearful of asking for changes or making complaints because they were worried their services would be withdrawn.

There were some minor differences in level of agreement with the survey question "I feel like I have control the care and services I receive" between CDC participants and the comparison group, and between CDCL and CDCH:

• lower levels of agreement among CDCL respondents compared with CACP respondents
• higher levels of agreement among CDCH respondents compared with EACH respondents, and higher levels of agreement among CDCH respondents compared with CDCL
• higher levels of agreement among CDC respondents with no packaged care history compared with those with previous packaged care experience

These points are illustrated in the tables below.

Table 14: I feel like I have control the care and services I receive

	CDCL	CACP	CDCH	EACH
Strongly disagree	0%	0%	0%	0%
Disagree	4%	0%	3%	0%
Neither agree nor disagree	7%	4%	3%	10%
Agree	65%	55%	50%	69%
Strongly agree	18%	36%	44%	17%

Based on responses received from 124 CDC participants and 126 standard packaged care (comparison group) recipients. ‘Don’t know’, multiple and blank responses have not been reported in this table.
Note that there were insufficient responses CDCHD and EACHD recipients to be included in the analysis
Source: CDC and comparison group surveys, conducted August 2011.

Table 15: I feel like I have control the care and services I receive

	Receive packaged care before	Did not receive packaged care before
Strongly disagree	0%	0%
Disagree	5%	4%
Neither agree nor disagree	3%	0%
Agree	66%	60%
Strongly agree	19%	33%

Based on responses received from 124 CDC participants and 126 standard packaged care (comparison group) recipients. ‘Don’t know’, multiple and blank responses have not been reported in this table.
Source: CDC and comparison group surveys, conducted August 2011.

Interestingly, the responses to the survey question “Compared to six months ago, how satisfied were you with the level of control that you feel you have over your care?” illustrates a different picture – with CDC respondents (both CDCL and CDCH) reporting a greater level of satisfaction than the standard packaged care group.

Table 16: Compared to six months ago, how satisfied were you with the level of control that you feel you have over your care?

	CDCL	CACP	CDCH	EACH
Not satisfied	1%	0%	0%	0%
Somewhat less satisfied	4%	1%	0%	7%
No different	22%	44%	15%	62%
Somewhat more satisfied	29%	29%	35%	24%
Much more satisfied	35%	23%	41%	3%

Based on responses received from 124 CDC participants and 126 standard packaged care (comparison group) recipients. ‘Don’t know’, multiple and blank responses have not been reported in this table.
Note that there were insufficient responses CDCHD and EACHD recipients to be included in the analysis.
Source: CDC and comparison group surveys, conducted August 2011.

Degree to which participants and carers were able to self-manage

Most participants were able to manage their package to some degree, at least to the level of making simple, day-to-day bookings and scheduling changes, maintaining timesheets, and managing problems such as support workers being late. However, few participants took on a substantial self-management role – either because they were not given that option by their provider, had no interest in self-managing their package and their support arrangements, or did not feel that they were able to.

Some participants and carers interviewed described how their CDC provider worked with them to understand their package, and to build their capacity to monitor and manage aspects of their package and their support arrangements themselves. This included providers explaining to them how to interpret budget statements, use timesheets, deal with service providers, and resolve problems with their support themselves (such as what to do if a support worker did not show up, or there were concerns about quality of the support).

Younger carers of CDCH and CDCHD participants were generally able and more willing to predominantly self-manage their package, often with very little or no assistance from their CDC provider. There were also some older participants and carers who showed an interest in self-management. Some carers were particularly concerned that they did not have enough control of their package and in particular enough control of the package funds.

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16. There was, however, a level of dissatisfaction among a small number of participants and carers about the lack of information and justification of the case management and administration fees applied by providers. These participants and carers generally felt these costs were too high and could not understand how they compared to a standard package.
17. Examples included computers and internet connections, engagement of informal workers (such as family members), requests for cash payments of CDC funds, or requests to use CDC funds on informal social activities), and those requests were denied.

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