THE CARING FOR CARERS POLICY
Department of Disability, Housing and Community Services ACT Government
11 December 2003
Inside Cover
Publication and Contact Details
Table of Contents
1. 2. 3. 4. 5. 6. Background .............................................................................. 2 Defining Caring and Carers ...................................................... 2 Policy Context and Impact........................................................ 3 Core Principles ......................................................................... 5 Principles and Objectives ......................................................... 6 Implementation....................................................................... 17
Supporting Documents Appendix A: A Statistical Profile of Carers in the ACT Appendix B: A Review of Effective Carer Interventions Appendix C: Carers Advisory Group Members Appendix D: Community Consultation Discussion Paper Appendix E: Final Report Community Consultation Appendix F: Project Development Report and Methodology
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1. Background
The Caring for Carers Policy embodies the ACT Government’s commitment to better acknowledge Carers and address their needs. The development of this policy is the result of a whole of government project conducted by the Department of Disability, Housing and Community Services. Major activities have included data analysis to compile a statistical profile of carers in the ACT; a review of local and international research relating to effective supports for carers; the identification of approaches to supporting carers in other jurisdictions; extensive consultation with stakeholders including carers and people who require care. The project also gathered input and feedback from service providers and ACT Government agencies. The policy has a number of supporting documents available as appendices, these documents provide more detail on methodology and document the findings from the research and consultation activities.
2. Defining Caring and Carers
To provide care is to respond to a need for assistance and support within the family or community. Caring encompasses many of the daily interactions that maintain and enhance human relationships, for example, people often rely on each other for help with preparing meals, buying food and other day-to-day tasks. The amount and type of caring varies and often changes over time. In the usual course of life, most people will provide care to other people and receive care themselves. Sometimes people need care that is unusually high or intense, continues over a long period of time or has a significant impact on themselves and others. Often it is families, friends and neighbours who respond to these needs. This policy has been developed to provide better recognition and support to people who provide care to others, while also recognising the rights of those receiving care. For the purpose of this policy, a carer is defined as: “A person who provides, or has provided, unpaid care and support to a person who has needs associated with disability, ageing, ongoing physical or mental illness or substance use.” Within this definition 'disability' may be physical, sensory, intellectual, psychiatric or neurological; 'care and support' includes emotional support as well as physical care. The term ‘unpaid’ does not exclude carers receiving a pension, carer payment, carer allowance or financial support from a partner, relative or friend. The term 'unpaid' does exclude those who are employed to provide care and receive a wage or salary. A number of terms are used to refer to specific types of carers. ‘Primary carers’ are people who provide the most assistance with one or more activities within a group such as a family or social network. ‘Young carers’ are children and young people under 25 years of age who provide care, often to a parent, sibling or older relative. 'Mature carers’ are older people who have often provided care to an adult child, partner or other relative.
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3. Policy Context and Impact
The number of carers, as well as the complexity and intensity of care being provided, has been increasing over recent years. Several trends have contributed to this, including: the move away from caring for people in large facilities such as institutions; and population ageing. In 1998, the Australian Bureau of Statistics estimated that there were over 43,000 carers in the ACT, representing approximately 14% of the population, or one person in seven. These carers were providing care to a partner (43%), parent (26%), son or daughter (18%), or other relative including siblings and in-laws (13%). Most carers were living with the person they care for but this was not always the case. Common caring activities are personal care such as bathing and dressing, as well as help with communication, housework, meal preparation and home maintenance. There is no such thing as a ‘typical’ carer. Caring occurs in all types of relationships and people of all ages can be carers – including children, young people, adults and older people. Many carers have other responsibilities such as full-time or part-time employment, study commitments and raising children. It is estimated that there are around 7,600 ‘young carers’ who are under 25 years of age, within this group more than half are under the age of 18 years. The majority of carers are female with 53% of all carers and 82% of primary carers in the ACT are female. Reflecting the diversity of our community, 31% of carers in the ACT are born overseas and over 1.15% of carers are from Aboriginal or Torres Strait Islander backgrounds. Concepts of care have matured. Historically the literature about caring has depicted carers as ‘burdened’, caring as a ‘problem’ and people receiving care as ‘dependent’. There is now recognition that caring has positive and negative impacts on those in the care relationship and on the community. Caring relationships are often defined by interdependence, reciprocity, dignity and mutual respect. For example: Adults with a disability make significant economic, domestic and emotional contributions to their relationships Young carers need parental guidance and support no less than their peers; Some families may receive financial assistance or help with child care in return for assisting an older person with household chores and home maintenance; Older couples often support and care for each other; and Many carers have a disability and may themselves require some assistance (In the ACT, 30% of all carers and 35% of primary carers have a disability).
Notwithstanding the difficulties in separately identifying carers and people receiving care, existing approaches to supporting these relationships have not been adequate. Research has identified that carers often experience difficulties such as: Problems balancing work or study demands with caring responsibilities, which can lead to loss of earnings or employment, poor grades or withdrawal from school. Health conditions, which can occur as a result of care activities such as heavy lifting, repetitive tasks or lack of sleep. Mental health issues such as depression, stress or anxiety.
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Relationship difficulties and less time for social activities or leisure.
There are also risks for people who are receiving care through family and social networks. Some examples include: People receiving care may have limited power in the relationship and experience limited choice or control over aspects of their life such as activities they undertake. The normal dynamic between couples or parents and children can be disrupted by the caring role leading to feelings of frustration, inadequacy, burden or guilt. People who depend on others for care can be more vulnerable to abuse (eg physical violence, emotional abuse, theft or misuse of financial resources, sexual assault) and may find it harder to escape or get help to end the abuse.
This policy aims to provide a basis for building better supports for carers in the ACT to reduce the risk that people in the care relationship will have negative experiences. In particular, there is recognition that carers should have choices, receive support to make decisions about the caring role and have their own needs recognised by human services. This policy also recognises that people requiring care should not be solely dependent on the resources and goodwill of their immediate family or social network. A range of supports provided by the community should be available to offer choice and any assistance necessary to achieve a quality of life that is in accordance with community standards.
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4. Core Principles
Seven core principles provide the foundation for the Caring for Carers Policy: 1. Carers have the right to decide whether to take on or continue the role of care and are supported in their choices. 2. The health and well being of carers is supported through services and programs that are flexible and responsive to individual needs and circumstances. 3. Resources are available to provide timely and adequate assistance to carers. 4. Affordable services of a high standard are available to people who need care, complementing the role of the carer. 5. The critical contribution of carers is recognised, valued and promoted in the community. 6. The carer and the person receiving care are regarded as a partnership, in which each person has rights and responsibilities. 7. Organisations welcome and support carer participation at all levels of decision-making, with respect for the rights and choices of people receiving care. A set of objectives has been described against each of the core principles. These objectives provide the basis for implementation and are linked to strategies and actions that will result from this policy. The policy contains a brief discussion of each principle and the associated objectives. More detail is available in supporting documents.
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5. Principles and Objectives
Principle 1: Carers have the right to decide whether to take on or continue the role of care and are supported in their choices. Objectives 1.1 1.2 1.3 1.4 Government, carers and community recognise the right of carers to decide to take on or continue the caring role and choose the degree or extent of care provided. Governments and community recognise the negative and positive impacts of the caring role on those in the caring relationship. Individuals and families have information about care options including services and community supports, in order to make decisions about care arrangements. ACT Government agencies and government-funded agencies encourage individuals and families to plan future caring arrangements and support carers through advice, information, needs assessment and assistance with support coordination. Agencies respect and support the relationship between carers and people requiring care through transitions to formal or shared care arrangements and on an ongoing basis. When care responsibilities cease or decrease, carers and former carers have access to practical assistance and emotional support to adjust, this may include information about housing and financial assistance, advice on return-to-work and study options, grief or relationships counselling.
1.5
1.6
Discussion There is a community expectation that families will provide support to people who need care, but there is also an understanding that care is not only the responsibility of families. While caring can be a positive and rewarding experience for many, it can have a negative impact on individual health and wellbeing if the demands of caring exceed the carers’ economic, physical or psychological capacity to provide care. A broad range of services and supports are funded through government and non-government agencies to provide care and support to individuals and families. To have real choice, carers need to have options and information about support. Many carers currently feel that they do not have choices because of difficulties accessing services. Carers can also experience other difficulties when making decisions, for example a decision to end or reduce care is difficult. Some carers believe that if they stop or reduce care they will be criticised, or that this might lead to the person they care for being forced into an unsatisfactory care arrangement. These concerns may prevent them from seeking help or delay help seeking until they are in a crisis. Positive promotion of carer support services will encourage earlier help seeking and planning. It is important that a decision to access services or alternative care arrangements is not seen as a decision to withdraw from the relationship or stop being involved in the way that care is provided. The contribution of the carer should be acknowledged and their ongoing involvement encouraged. It is important that services continue to recognise and support the natural relationships between family members and friends. Changes that can lead to a reduction in caring responsibilities or the end of a caring relationship, include: changing family structure; a death or illness; changing needs; or the
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opportunity to access services. These changes can have a significant impact on carers who might require assistance to adjust to new circumstances. Types of assistance include help to return to work or study, grief counselling, housing and financial advice, support to build social activities and networks. In particular, young carers may need help to catch-up with their peers if their education, work prospects or independent living options have been affected while they have provided care.
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Principle 2: The health and well being of carers is supported through services and programs that are flexible and responsive to individual needs and circumstances. Objectives 2.1 Advice and information services assist carers to balance their caring responsibilities with other activities including work, study or training, family relationships and activities, social/recreation and leisure activities. Carers and people receiving care have access to practical assistance that minimises the level of care required or the impact of caregiving on the carer, including: - Respite care or in-home care; - Home help; - Equipment and technology; - Home and vehicle modifications; - Counselling and family support; and - Advocacy support when dealing with organisations. There is equity of access to supports across the diversity of carers, including children and young carers, carers from diverse cultural background, Indigenous carers and carers with a disability. Carers have opportunities to develop skills and knowledge to assist them in their caring role, through formal training, information strategies and learning networks. Supports are provided at times convenient to the carer and the person receiving care, including out of business hours such as evenings and weekends. Agencies and informal networks between carers are encouraged to develop social and psychological supports for carers including networks and friendships, opportunities for formal and informal debriefing opportunities and mentoring. Better approaches are developed to prevent, identify and respond to abuse within caregiving relationships across human service sectors, acknowledging that both people receiving care and people providing care can be at risk. The effectiveness of carer supports and interventions are regularly evaluated in consultation with carers.
2.2
2.3
2.4 2.5 2.6
2.7
2.8
Discussion Carers are not all the same; they have very different needs. Important differences between carers include the nature of the caregiving relationship (eg parent-child, adult-older person, spouse), the age of both the carer and the person receiving care, the length of time that care has been provided, the cultural background of carers and people receiving care and the extent to which the caring relationship is supported by other family members and social networks. Carers also have multiple types of need. Some needs relate to the activities of care (eg how to safely lift someone into the shower or how to respond to a medical event). Other needs relate to taking care of their own health and well being, this includes participating in economic, social and community life. In general, one type of support on its own will not make a big difference but a combination of supports can have a substantial impact on quality of life. There are many specific issues for young carers, mature carers, primary carers, Indigenous carers and carers from diverse cultural backgrounds. For example, access to respite care is of particular concern to carers but clear distinctions are needed between the
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needs of children, young people and adults in regard to respite care services as quite different models of support are required. People with a disability, health or mental health condition and older people have an increased vulnerability to abuse as a result of a complex range of social, environmental and personal factors such as low self esteem, social isolation and poor community awareness. Carers can also be at risk of abuse, particularly when they are dependent on the care relationship for housing or financial support or when the person they care for has challenging behaviours. Although it is rare for abuse to occur within caring relationships, when it does occur it can be hard to detect and responding can be difficult. The prevention, identification and response to abuse is an important area in which more work needs to be done.
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Principle 3: Resources are available to provide timely and adequate assistance to carers. Objectives 3.1 3.2 3.3 Needs assessment and data collection within human service sectors and across the ACT informs resource planning and allocation to carer supports. The ACT Government provides opportunities for carers and agencies to identify gaps in services and unmet need. Human service providers and health professionals develop expertise and knowledge to better identify carers, assess their needs and assist them to access supports through advice and referral, across a range of service systems and early contact points, recognising the diversity of carers and their experiences. Carers are supported to plan for and cope with key transitions in the caring lifecycyle, such as: - The onset of care; - Changes in the level or nature of care; - Changes in the carer's life such as work, other children; and - When care ceases.
3.4
Discussion Agencies and carers have identified substantial unmet need for carer supports, with particular emphasis on respite care, equipment and modifications. The evidence presented is compelling but not easy to quantify into clear levels or units of need that can be met through resource allocation. The ACT has not had a coordinated approach to monitoring carer needs through data collection. There has also been concern expressed in relation to fairness in access to supports. It has been suggested that priority be given to supporting carers with the greatest needs. There is currently no consistent approach to assessing the needs of carers across service sectors, although some individual services have developed effective assessment tools. Effective resource planning requires an understanding of when carers are more likely to need assistance and how they access services and information, recognising that the caring role can be dynamic - constantly changing over time. There is growing recognition that support for carers is particularly important during transitions, such as when care first begins, the level of care required changes (increases, decreases or ends) or when the carer experiences changes in their life such as changes to work or family demands. Carers have asked for easier access to information through central points of contact. A number of approaches have been tried (eg Commonwealth Carelink Centres) but more work is needed because carers are a diverse group and look for information in many different places. Health and community service agencies can be good places to offer information, referrals and direct assistance to carers.
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Principle 4: Affordable services of a high standard are available to people who need care, complementing the role of the carer. Objectives 4.1 4.2 ACT Government agencies consider the needs of carers when planning and allocating resources to human services. ACT Government agencies develop approaches to early intervention, forward planning and flexible support, to sustain the care relationship and prevent the need for crisis or intensive interventions. The ACT Government works to achieve ongoing reductions in unmet need for human services across the range of service sectors. The financial well being of carers and families is improved through strategies to address poverty and reduce costs associated with caring. Health and human services engage carers in quality assurance and improvement and promote access to complaints mechanisms. Health and human services work with carers to develop the skills of both formal and informal carers to provide quality care that is safe, positive and valuing.
4.3 4.4 4.5 4.6
Discussion Carers and service providers report substantial unmet need including supported accommodation for people with a disability, people with mental health issues and older people, as well as services that assist people to participate in the community through employment services, education and training, social and recreational activities. Poor access to services can lead to high levels of informal care, stress in caregiving relationships and anxiety about the future. Carers have also identified problems with the way that some human services are provided. For example day activity services often close at 3 pm which is not a reasonable time for carers who work full-time to be available to provide transport and/or support at home. Carers are also very concerned about the quality and appropriateness of services. Carers seek more active involvement in quality assurance and improvement systems, including the selection and training of staff employed to provide care and support; being able to make complaints about the quality of care, without fear of reprisal; and participation in quality assurance planning processes. Many carers incur high costs related to supporting others and often live on low incomes. This can exacerbate problems associated with reduced earning capacity, housing difficulties and social isolation. The lack of financial capacity can impact on the ability of the carer to access much needed supports and to balance their responsibilities. Carers should not be forced to live in financial disadvantage. Instead there are benefits to be derived from increasing the financial wellbeing of families with a member who has caring needs as this can contribute to strengthening families, building resilience and capacity to deal with difficulties that may arise.
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Principle 5: The critical contribution of carers is recognised, valued and promoted in the community. Objectives 5.1 Caring is promoted in the community as a valued role, in a way that encourages people with caring responsibilities to identify as carers, with particular attention to specific groups such as young people, people with a disability and people from diverse cultural backgrounds. The contribution of carers is acknowledged and respected by the ACT community and the ACT Government, including recognition in policy, publications and events. The ACT Government engages with the general public, community organisations and the business sector to identify ways to recognise carers and evaluate the impact of promotion and recognition on community attitudes. Carers are informed about supports and services through information and advice provided in community settings. Caring skills and experience are formally recognised by training organisations, accreditation schemes and employers. Employers recognise carers and develop family friendly work places. Education and training organisations recognise carers and provide flexibility to support people combining study with caring responsibilities.
5.2 5.3
5.4 5.5 5.6 5.7
Discussion Carers make a substantial contribution to the economic and social welfare of our community. It is estimated that ACT Carers provide over 70% of the support to people who need assistance with self care, communication, housework and meal preparation. In addition, carers are also advocates for people accessing human services. Their input has led to the development of more innovative and responsive approaches to providing support. Carers also provide highly valued support to other carers, such as information about services, practical advice, skills development and emotional support. Despite the significance of the contribution made by carers, the caring role remains largely invisible and unrecognised. Many people do not identify as a 'carer' or seek support because of values, beliefs and attitudes that downplay the importance of the role. Within some cultural groups in our community, there is a perception that seeking assistance may be seen as neglecting family responsibilities or duty. Those that do identify as carers often feel that their contributions and support needs are not well understood. The public recognition of carers is fundamental to removing the social and attitudinal barriers to accessing support from services and the community. It is important that the recognition of the valuable role and contribution of carers is respectful to carers and people who receive their care and acknowledges the interdependency in relationships. Feeling acknowledged and respected can contribute to leading to experiences of improved self-esteem, coping resources, health and well being; as well as reductions in stress, depression, feelings of isolation and pressure. Improvement in employment opportunities for carers could be achieved through the recognition and accreditation of carer skills by training organisations and employers. This would help carers to re-enter the workforce after a period of caring and allow young carers
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to more easily balance their education and caring responsibilities. It could also provide a larger, more diverse workforce for human services. There are many ways to recognise carers. To ensure maximum benefit, it is important that the community is supported to design and develop initiatives. This could be an opportunity to engage carers, services, the multicultural and indigenous communities, the arts and business communities to develop creative and innovative initiatives that recognise carers. It is further important that the impact of these initiatives are evaluated over time to ensure that hidden carers are reached and supported and professionals, workplaces, schools and the community become more responsive and supportive of carer needs. Carers who work or want to work, often need flexibility in workplace arrangements including options regarding working hours, flexible leave arrangements and family friendly practices could be further encouraged. The need for flexibility is also important in relation to education and training. Carers, including young carers who study, may benefit from the flexibility to: complete education at home; have caring skills recognised as part of their education; take periodic leave from study commitments; and have extended timeframes for completing courses.
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Principle 6: The carer and the person receiving care are regarded as a partnership, in which each person has rights and responsibilities. Objectives 6.1 The welfare of both carers and people receiving care is recognised in legislative and policy frameworks that underpin human services, with particular attention to the welfare of young carers. Human services have the necessary flexibility and capacity to respond to the needs of individuals and their broader family or social network to sustain caregiving relationships. Health and human services provide both service users and carers with clear information about their respective rights and responsibilities within the service delivery context. Government and non-government organisations working with people in caring relationships promote and facilitate mutual understanding and agreement between the parties, including respect for individual rights to privacy, choice, quality of life and self-determination, access to information and individual supports.
6.2
6.3
6.4
Discussion If we regard the caring relationship as a partnership, then the support that is provided has the capacity to benefit all parties and should not be narrowly directed at one individual or one area of need. To develop more holistic approaches to service delivery, resulting in supports that benefit families and carers as well as individuals, we need to look at the design and administration of service delivery. Legislative and policy frameworks underpin major programs such as disability services, aged care, mental health services, family support services and education. Often these frameworks focus on the specific needs of one group rather than the broader family and social network. Children and young people who are carers can be at particular risk of not being recognised and treated as part of a caring relationship. Sometimes they are simply ignored or excluded. In other cases families with young carers do not seek help from services because they are worried about how services will respond, for example that family relationships or home life will be disrupted or that their circumstances will be labelled or judged by others. We need more sophisticated approaches to support families with young carers in order to protect their welfare and maintain family relationships in positive ways that encourage more young carers to access support. Most human service sectors have provisions in place to inform service users of their rights upon entry to the service and the ACT Government supports this as good practice. It is desirable that carers are informed about their rights and responsibilities upon first contact with services. This might involve the development of formal statements outlining carer’s rights and responsibilities covering all aspects of involvement with the service.
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Principle 7: Organisations welcome and support carer participation at all levels of decision-making, with respect for the rights and choices of people receiving care. Objectives
7.1 Legislative and policy frameworks support carer involvement in human services. 7.2 Examples of best practice in carer participation are promoted to organisations.
7.3 Health and human services have flexible processes in place for sharing information with carers and engaging them in decision-making, allowing for diversity in the age and cultural background of the carer and different types of caring relationships which may change over time and may require contingency arrangements. 7.4 People who access services are informed about processes for involving carers and are supported to make decisions about the extent they wish to involve or exclude carers in decision-making about their individual care. 7.5 Organisations develop the skills of their staff to support carer participation, including an awareness of barriers to participation, the rights of all parties and respect for the expertise of carers. 7.6 Health and human services have processes in place to involve carers in organisation planning, staff training, quality assurance and policy development. 7.7 ACT Government agencies consider the potential impact on carers when developing social policy, major service plans, frameworks or funding mechanisms and actively support carer participation when appropriate. Discussion Many people receiving support from carers will also access a number of human services, including health services. Often people would like to have their carer actively involved in designing and coordinating supports, as well as making decisions about care or treatment options. The involvement of the carer can benefit the individual and the service provider because carers can contribute skills and knowledge of the person's needs. It is also often the case that decisions made in service settings will impact on carers or require their support and cooperation, yet many carers report difficulties with participating in decision-making processes and have poor relationships with agencies. The decision to involve carers in decision-making about an individual's care and other service processes rightfully belongs to the person who is receiving the service, except when they are children or people who are unable to make this decision. The responsibility of organisations is to provide the option for service users to involve carers in a meaningful way and to negotiate agreements for sharing information, decision-making and providing support in a way that maintains service user rights to choice and self-determination. Organisations that successfully engage carers have a real commitment to building trust between all parties. The involvement of carers may appear straightforward but there are many complexities in practice. Rather than blanket policies on confidentiality, services may need to develop guidelines for recording decisions by service users for some but not all information to be shared with carers. Services may also need to develop protocols to manage any conflict between the interests of service users and their carers. Processes for involving carers must recognise that caring relationships change over time and so flexibility is important. Finally, contingency planning may be required for circumstances where the person receiving care
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may unable to make decisions or provide consent but would like services to interact with carers. Sometimes, services and professionals are concerned about their responsibility and liability in relation to protecting client confidentiality when working with carers. These concerns sometimes result from a poor understanding of legislative and policy requirements, but in other situations there are legislative barriers to sharing information. Legislation and government policy may need to be examined for possible amendment. When carers are involved in service processes it is important that individual staff recognise their expertise and work with them collaboratively to achieve the best outcomes for the individual. Particular strategies may be needed to involve young carers in decision-making without undermining the natural relationships between family members (eg parent-child). Some young people may need help from another organisation to develop advocacy skills or be represented by an advocate. Cultural sensitivity is also important as some cultural communities will have different approaches to communicating about options, participating in decision-making and determining who will be involved. At a broader level, carers should be recognised and involved at higher levels of decision-making such as the development of policy and programs that impact on them and the development of services that are responsive to carer needs.
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6. Implementation
The Caring for Carers Policy will have an Implementation Strategy that will be managed by the Department of Disability, Housing and Community Services and will be overseen by an Implementation Working Group. The Implementation Strategy will include actions that result from the policy objectives with responsibilities and timeframes for their achievement, encompassing both government and community agencies. Priority actions will be identified for resource allocation and reporting requirements will allow for effective monitoring. Implementation of the policy is subject to available resources. Allocation of new funding sought and received to meet the Carers Policy will be subject to the Government Procurement Act 2001. Nominations for the Implementation Working Group will be invited after the launch of the Caring for Carers Policy in early 2004.
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