Evaluation of the consumer - directed care initiative - Final Report
7.2 Extent to which CDRC was person-centred and increased choice and control
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
Involvement in planning and decision-making
Nature of involvement in care planning and budget planning process
As discussed in chapter 3, planning for CDRC participants had a strong goal focus, and CDRC participants were heavily involved in the planning process. Typically, this involved a series of one-on-one discussions with a coordinator, with some participants needing more time for thinking about what they wanted to do or achieve and what they wanted to use their package for, though others were very clear and could quite clearly articulate what they wanted to use their package for in one meeting.Discussions about the budget and the cost of supports were an integral part of the planning process – though they came at a later stage once participants had identified what they wanted to do or achieve, and had identified the types of supports they wanted to use.
Both providers and participants interviewed stated that the planning process was driven by the coordinator – and providers typically had their own specific ‘process’ which they were following. However, providers stated that participants were very much at the centre of discussions, and the majority of participants interviewed were satisfied with their involvement in the planning process. Many noted that this was not something they could do themselves – the coordinator had a key role in helping them identify their goals as well as how they could best use their package. Many carers appreciated the suggestions and options that the coordinator gave about specific supports and how they might be delivered.
One of the common themes from participant interviews was that for many carers it was difficult initially to think about themselves and what they needed and wanted, rather than focussing only on the person they cared for. This was particularly apparent for long-term carers and older carers. Many carers had become accustomed to thinking only about the person they care for and arranging their lives around this person, and typically arranged activities (like shopping, household chores, social activities) around the schedule of the person they cared for. Simply getting used to the idea that the CDRC package was for them – the carer – and not the person they care for took time for many carers. Thinking about what they wanted to do or achieve with the package was also difficult for some carers, given they were not used to thinking about themselves and their lives. For these carers, the approach and support provided by the coordinator was particularly important – to give them time to consider what they wanted from the package, and to build their capacity and confidence in speaking for themselves.
“It allowed me to be more my own person”
CDRC participant
Carers who were particularly stressed or in-crisis at the time the package was offered found it more difficult to engage in the planning process, and for them, the initial contact and discussions with the coordinator was more about being supported by the coordinator and building trust with the coordinator. For these carers, it was important to put some regular supports in place quickly and then focus on planning and how they might want to use their package.
Example – immediate response
A woman who had been caring for her mother with dementia for a relative short period was finding it increasing difficult to cope as her mother’s condition deteriorated. She knew nothing about dementia and was not receiving any support prior to receiving a CDRC package.The CDRC provider organised residential respite care for her mother to enable the carer to attend a weekend retreat, where she was able to learn about dementia and how to manage behavioural and physical support needs, as well as meet other carers of people living with dementia.
Budgeting
Many carers were attracted to the notion of having a set amount of funding which they had control over, and appreciated the transparency that this along with information on service costs provided.Budgeting aspects were a key part of the planning process – particularly in the latter stages – though as for CDC participants, CDRC participants varied in their level of interest in the detailed budgeting and package allocation, with many carers focussed on what they could access with the funding rather than the detailed budgeting and package allocation. Older carers, people who had little experience with accessing formal services, and those who were in stress or who had recently been in crisis were typically less interested, and left it to coordinators to do the budget and allocate the package. Some carers – particularly those who were more financially savvy and those who were able and wanted to self-manage, were more interested in the details of the budgeting process and in the costs of supports.
It should be noted that many CDRC participants thought that the package was relatively generous – particularly during the period of the evaluation when participants had a full year’s allocation ($4,200) to spend in six months or less. While participants were making decisions and trade-offs in terms of how to spend their package, ‘difficult’ decisions did not need to be made given the quantum of funds available, and as a result participants may have been less interested in the budgeting aspects of the package than if the package was to be used over an annual period (which will occur for 2011-12 and subsequent years).
Involvement of the people being cared for
Involvement of the person being cared for in the planning process differed across participants – though it is important to note that it was the carer’s choice whether to involve the person they cared for, and this invariably was driven by the person’s capacity to participate and the nature of the relationship they had with the person.Many carers chose not to involve the person they care for, and the carer and coordinator arranged planning discussions at times when the person being cared for was somewhere else – so that the carer was able to focus fully on the planning discussion. For many of these carers, it was important not to involve the person they care for in the planning discussions to reinforce the notion that the package was for them – the carer. Typically, carers who were caring for someone with dementia, or who were carers of a parent or older spouse, chose not to involve them directly in planning discussions. However, in many cases the person they cared for was consulted about what would be happening, and at the very least, the needs and preferences of the person they cared for were taken into account in the discussions.
Other carers did involve the person they care for in discussions, though generally not as an active participant, and the skill and approach of the coordinator was important to maintain the focus on the carer. Typically, a person caring for their spouse would involve their spouse in discussions, where their spouse had the capacity to be involved, and especially where the couple had always made decisions as a unit rather than individually.
Level of satisfaction with the planning process
Overall, the level of satisfaction with the planning process, including the level of participant involvement and the extent to which their needs and goals were taken into account, was very high for CDRC participants and considerably higher than the NRCP comparison group, based on survey responses received:- 66% of CDRC respondents strongly agreed with the statement “I felt included in the process of planning my respite services”, and a further 27 per cent agreed with this statement. This is considerably higher than for the NRCP comparison group (22 per cent strongly agreed and 62 per cent agreed with the statement).
- 67% of CDRC respondents ‘strongly agreed’ with the statement “My needs and goals were taken into account in the process of planning my respite services”, compared with only 20% of carers in the NRCP comparison group. However, there was a high proportion of comparison group respondents who ‘agreed’ with this statement (62%).
Table 28: I felt included in the process of planning my respite services
Response | CDRC | Comparison |
|---|---|---|
| Strongly disagree | 1% | 4% |
| Disagree | 2% | 2% |
| Neither agree nor disagree | 2% | 4% |
| Agree | 27% | 62% |
| Strongly agree | 66% | 22% |
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 29: My needs and goals were taken into account in the process of planning my respite services
Response | CDRC | Comparison |
|---|---|---|
| Strongly disagree | 2% | 4% |
| Disagree | 2% | 5% |
| Neither agree nor disagree | 2% | 5% |
| Agree | 26% | 62% |
| Strongly agree | 67% | 20% |
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 30: I am satisfied with the way my respite care is planned and coordinated
Response | CDRC | Comparison |
|---|---|---|
| Strongly disagree | 2% | 4% |
| Disagree | 3% | 7% |
| Neither agree nor disagree | 1% | 5% |
| Agree | 40% | 53% |
| Strongly agree | 51% | 27% |
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.
Benefits of involvement in care planning and budgeting
One of the main benefits of CDRC was the ability for a carer to plan regular support in advance – to enable them to take a break and to do the things they wanted and needed to do. There was a definite shift in focus compared with NRCP from more short-term, emergency and sometimes intensive respite to regular less intensive support (including respite). This has considerable impacts on CDRC participants’ quality of life and wellbeing, their social connections and relationships and participation in social and community activities. This is discussed further in section 7.3.There were also benefits from merely being involved in planning. For carers, simply having a conversation with someone about what they wanted and needed and being able to make some decisions about their life was one of the main benefits of CDRC and of being involved in planning. For many carers, this was the first time that this had occurred and the first time that someone was focussing on them as carers rather than focussing on the person they care for. Regardless of the planning outcome or the supports that were put in place, a common theme from interviews was that carers felt recognised and valued, and that they were important, and this in itself had an impact on their capacity and commitment to continue with their caring role.
“It makes a big difference to have someone there to talk to. Sometimes I feel very lonely, but (the coordinator) is always there, and she always has good advice.”
CDRC participant caring for her mother
A number of participants highlighted developing a strong relationship with the CDRC coordinator, and considered this relationship to be an important source of emotional support and advice on a wide range of issues related to the participant’s caring role. In particular, the strength of this relationship, together with the effectiveness of the coordinator’s skills and approach, was important for many CDRC participants in building their capacity to self-identify needs and goals, and for some carers to build their capacity to take on more of the management and coordination of their package themselves.Top of page
Extent of participant ‘choice’
Choices available to participants
Providers stated that CDRC provided greater choice and flexibility for participants than NRCP, and noted that CDRC was not constrained by predetermined service types and rules around what can and cannot be funded in the same way that NRCP is constrained.Planning and decision-making process was more complex than choosing from a ‘menu’. As stated earlier, it was more common for CDRC providers to take a goal-focussed approach to planning, and there was heavy focus on identifying participants’ goals in the planning phase. This approach meant that invariably participants were not choosing from a menu of predetermined service types, but rather were identifying what they wanted to be able to do or achieve and then identifying the nature of the support they wanted and what these supports looked like.
This meant that notions of ‘choice’ of supports were intertwined with notions of the supports participants wanted to access and ‘input’ into and ‘control’ over the design and delivery of these supports. A common scenario was a participant wanting to have regular time for themselves so they could do what they needed and wanted to do. This might be a day per month or a morning or afternoon each week so they could go to their bridge club, to a yoga class, to visit family or spend time with friends. In these situations they typically wanted a support worker to come to their home and spend time with the person they care for, prepare a meal, or do some housework. They would decide when the support worker would come, how long the support worker would stay, and what the support worker did while they were in their home. They may even decide which support worker they want – based on support workers already known to them, or after trialling a few support workers to determine who they had most confidence in and who got along well with the person they cared for. In this scenario there were elements of choice (of support worker), and of control and input into how the supports were delivered (that is, the day and time, and the tasks the support worker had).
Many participants felt that they had increased level of comfort with formal care, and ‘peace of mind’ and that the person they care for was being looked after, as a result of being able to choose their supports and support worker, and in particular choosing in-home support rather than using residential respite.
Participants also were able to ‘choose’ the traditional types of services such as residential respite that were available under NRCP and other community care programs, though were also able to use their package innovatively and flexibly to purchase non-traditional supports – which were not available under NRCP. Further, there was more scope to choose types of support that were difficult to access under NRCP (because of limited funding or services), such as regular in-home respite or in-home support, and more scope to influence or decide how supports were delivered (such as choice of support worker).
Providers stated that they were open and flexible to non-traditional support types, and participants stated that in general they were able to access the supports that they wanted. A few participants provided examples where providers did not allow them to choose specific types of support – primarily those supports that are not traditionally funded under NRCP or other respite programs. This may have been due to a lack of flexibility on the part of the provider, or the provider’s interpretation of the guidelines (both correct and incorrect interpretations).
Participants felt that CDRC providers were generally flexible and open to arranging a wide range of supports which would enable them to do what they wanted to do – there were numerous examples of flexible supports and creative or ‘non-traditional’ use of packages – as outlined in the box below.
Examples of creative or ‘non-traditional’ use of CDRC package funds
An Aboriginal man who was caring for his wife used part of his CDRC package for petrol to enable him to drive him and his wife to visit his wife’s family – hundreds of kilometres from where he and his wife lived. The journey allowed his wife to spend time with her family in the place where she came from, as well as providing the man with a break from his full-time caring role as family members took on more of the caring tasks.A woman who cared for her husband who had dementia used her CDRC package for her husband to go the local Men’s Shed– a place where he enjoyed going – for four hours each day. As her husband’s dementia deteriorated she found it more difficult to care for him, and the four hours each day provided her with the break she needed to be able to continue in her caring role. She used the break each day to do household chores, run errands, and meet friends. She said that if it weren’t for her CDRC package and the Men’s Shed, she would have had to place her husband in residential care.
A CDRC participant who was caring for her father who had dementia used part of her package for a gym membership for herself and her mother. Going to the gym allowed the daughter and mother to spend time together and to ‘reconnect’ outside of their home environment.
A CDRC participant from a CALD background used part of her package to purchase a pay-television subscription so that her mother, who she cared for, was able to watch programs in her native language. The participant saw this as a form of respite for herself, as well as allowing her mother to do something she enjoyed.
A participant in her 60s who cared for her mother used some of her CDRC package for a holiday so she could visit her son and grandchildren. She used the package to pay for a return airfare, as well as for in-home support for her mother who remained at home – a few hours in the morning and a few hours in the evening. She also arranged for neighbours and other relatives to visit her mother regularly while she was away.
A CDRC participant used part of her package for a holiday with her husband who she cared for. To assist with holiday expenses, the CRCC opened a bank account for the carer. The CRCC deposited funds into the bank account, and the carer was able to withdraw funds as needed during the holiday. The carer had the only card, and provided receipts to the CRCC.
For small items of expenditure, CDRC providers utilised vouchers (coffee, petrol, taxi), or reimbursed participants in cash.
However, there were some examples of providers refusing to fund specific supports or goods, and there was some inconsistencies between providers relating to what providers allowed participants to use their package for, including many of the examples highlighted above.
Survey responses indicated that CDRC participants were very satisfied with the choice of supports, and the assistance they received from the CDRC provider to make decisions about the types of supports they access:
- 88 per cent of CDRC survey respondents agreed or strongly agreed with the statement “The Commonwealth Respite and Carelink Centre helped me to plan and make decisions regarding the types of respite services I could choose”.
- There were similar levels of agreement with the statement “I was satisfied with the range of respite services that I could choose”, though a greater proportion (46 per cent) strongly agreed with this statement compared with the NRCP comparison group.
Table 31: The Commonwealth Respite and Carelink Centre helped me to plan and make decisions regarding the types of respite services I could choose
CDRC | |
|---|---|
| Strongly disagree | 2% |
| Disagree | 2% |
| Neither agree nor disagree | 3% |
| Agree | 33% |
| Strongly agree | 55% |
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 32: I was satisfied with the range of respite services that I could choose
CDRC | Comparison | |
|---|---|---|
| Strongly disagree | 2% | 5% |
| Disagree | 8% | 9% |
| Neither agree nor disagree | 7% | 2% |
| Agree | 33% | 62% |
| Strongly agree | 46% | 16% |
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.
Choice of support provider
All providers interviewed stated that they had agreements in place with a number of service providers to provide respite and other supports to NRCP clients, and providers used these agreements to broker services for CDRC participants in the same way as they do for NRCP clients. From a provider perspective, this provided a range of providers from which CDRC participants could chose to access services from. Where participants wanted other types of support or wanted to use their package for services not generally funded under NRCP (e.g. airline tickets for holidays, petrol vouchers), service providers stated that they would deal with the providers directly and either purchase the good/service, or seek quotes for the good/service and then pay for the one the participant wanted. Generally, these were ‘one-off’ cases, and did not require formal, ongoing agreements to be put in place.Choice of service provider did not appear to be as important to most participants interviewed as the choice of service or the input that they could have in designing the supports. This was especially the case where they had no prior experience of respite or other services. Where they had had some experience, carers may have wanted to utilise a particular support worker with whom they had worked before. A number of participants who used residential respite (and had used it previously) had strong preferences to use, or not use, particular residential respite providers – based on their previous (good or bad) experiences or what they knew about the providers.
In some cases, participants had done their own research into which support providers were available, or discussed the available support providers with their CDRC provider. This was the exception, however, and tended to be younger carers who took this course of action (that is, people caring for their mother or father, or caring for their older spouse). Very few participants stated they spoke with support providers directly, other than residential respite providers.
Unlike CDC providers, most CDRC providers did not have any significant in-house services that were available to CDRC participants, hence most supports were purchased or brokered from other organisations (in the same way that supports were purchased or brokered under NRCP). CDRC providers in the main used agreements with support providers that were already in place (for NRCP and other programs) to facilitate this, and at a minimum, CDRC participants were able to choose to receive supports from these providers. However, some providers stated that they used support providers with whom they did not have formal agreements in place to provide specific supports – mainly non-traditional supports, one-off purchases of goods or services (such as incontinence products, airline tickets), or common services that were readily available (such as taxis, garden maintenance). Top of page
Ability of participants to make informed choices
Providing real choice to participants was dependent on participants being aware that they had choices and that they had the necessary information to make informed choices. As noted above there was clear evidence of providers using a goal based approach to planning and working with participants to identify appropriate supports. However, participants did not necessarily know what supports were available or from whom, and relied on the CDRC provider to give them this information, to take them through support options, and to make suggestions regarding support options.The majority of service providers did not provide detailed written information to participants on support options and support providers, and some providers did not provide any written information to participants. Instead, there was a predominant view that participants should not be unnecessarily burdened or overwhelmed with information, and the majority of providers provided information verbally (on support options and support providers) during planning discussions, though some provided some high-level written information. It is not clear whether providers modified the level of information they provided to individual participants to suit the participant’s level of interest or capacity or need for information (for example, high level verbal information for participants whose needs and wants were clear or who were not actively involved in planning, detailed written information for participants who were actively involved and with an interest in self managing their package).
Based on the information collected, information on quality of services did not seem to be provided to participants.
Certainly, the majority of CDRC participants were satisfied with the level of information they received and relatively few stated that they wanted more information than they received, though it is difficult to say whether providing more (or less) information would have any impact on participants’ level of satisfaction or the decisions they had made.
CDRC survey respondents’ level of agreement with statements relating to the adequacy of information provided on types of supports, support providers and support costs that participants could choose indicated high levels of satisfaction (tables B.82-84). Top of page
Extent of participant ‘control’ over the services they accessed
As noted above, notions of control and input into the supports that participants identified were intertwined with notions of choice. Typically, participants had input during the planning process into the way that their supports would be delivered, who would provide them (that is, choosing a support worker or trialling a small number of support workers), the days and times when they access support and in some the nature of the tasks to be undertaken by support workers or providers.On an ongoing basis, participants also had a degree of control and input into how their supports were delivered where this was necessary – for example, being able to change the day or time when they accessed support, or direct a support worker to undertake different tasks (in much the same way as CDC participants). In a number of cases, participants would deal directly with the support worker or support provider themselves, though it was not uncommon for participants to ask their coordinator to do this for them.
There was a considerable level of agreement with the statement “I feel like I have control over my respite plan, and the respite services I receive” among both the CDRC and NRCP comparison group survey respondents, though stronger agreement among CDRC respondents.
Table 33: I feel like I have control over my respite plan, and the respite services I receive
CDRC | Comparison | |
|---|---|---|
| Strongly disagree | 1% | 5% |
| Disagree | 3% | 15% |
| Neither agree nor disagree | 8% | 7% |
| Agree | 37% | 55% |
| Strongly agree | 48% | 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.
The vast majority of CDRC and NRCP comparison group survey respondents felt comfortable in changing the types of services they received if they needed to, with the CDRC group more comfortable – as illustrated in the table below.
Table 34: I would feel comfortable asking to change the type of services that I receive if I needed to, or asking for a new type of service
CDRC | Comparison | |
|---|---|---|
| Strongly disagree | 1% | 4% |
| Disagree | 2% | 5% |
| Neither agree nor disagree | 0% | 5% |
| Agree | 41% | 56% |
| Strongly agree | 51% | 24% |
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.
Extent to which participants were able to self-manage their package
As for CDC, most participants identified being able to make simple changes to their support arrangements (e.g. change time of support worker coming), though typically participants relied on their coordinator to make more substantial changes (such as changing the days support workers came, or changing the nature of support accessed).Some providers encouraged participants to build their capacity to self-manage their package and take on more responsibility for managing their package and support arrangements, though providers had mixed success with this. However, as for CDC, a number of providers did not offer this as an option, preferring to manage the packages and coordinate support arrangements on behalf of their participants.
Many participants had no desire to manage more of their package themselves (or simply had not thought about it), did not want the responsibility or burden, or did not think they had the capacity. Younger carers and people new to a caring role were more likely to want to self-manage to some extent, and a small number wanted to be completely responsible for managing their package (dealing with support providers and paying for supports directly, rather than relating on a provider to do this for them).
Key points – Person-centredness, choice and control
- Overall there was a high degree of participant satisfaction with the CDRC approach and model – and in particular the flexibility that CDRC provides and the planned nature of supports.
- There were considerable benefits for carers from being able to plan supports in advance, and from simply being involved in the planning process. For many carers, they felt that they were being recognised and valued as carers – often for the first time.
- CDRC allowed carers to focus on themselves, rather than the person they care for. Most actively were actively involved in planning, though for some it took a while to determine what they wanted to use their package for.
- Many carers involved the people they cared for in planning discussions, though generally they were not actively involved in planning – the focus of planning was very much ‘carer-centred’.
- The relationship with the coordinator was particularly important for many carers. The strength of this relationship (and the effectiveness of the coordinator’s skills) seemed important for clients in building their capacity to self-identify needs and goals, building their capacity to self-direct, and receiving emotional support and advice on a wide range of issues related to their caring.
- CDRC provided more choice of supports and more control and influence over the supports carers received than other community care programs that carers had experience with. In particular, participants tended to choose in-home and flexible supports which enabled them not only to ‘take a break’ but also to do the things they wanted to do, including social activities and spending more time with their own family. Only a small proportion of participants chose to use residential respite.
- Many participants also used part of the package funding for ‘non-traditional’ supports, goods and services such as holidays, gym memberships, television subscriptions, continence products, and petrol.