Young Carers Research Project: Final Report

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In recognition of the needs of young carers in our community, the Australian Government contracted the Carers Association of Australia (now Carers Australia) to undertake a Young Carers Research Project. The aim of the project was to investigate the number, characteristics and needs of young carers in Australia in relation to facilitating their social and economic participation in the community. The report was published in September 2002.

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Acknowledgements & Abbreviations 

Acknowledgements

This report was prepared by Debbie Noble-Carr with the guidance and assistance of the project manager and staff from the Carers Association of Australia (CAA) and the research project Reference Committee.

Abbreviations

  • ABS - Australian Bureau of Statistics
  • ACT - Australian Capital Territory
  • AIHW - Australian Institute of Health and Welfare
  • ANTA - Australian National Training Authority
  • CA - Carers Australia
  • CSDA - Commonwealth / State Disability Agreement
  • DETYA - Department of Education, Training and Youth Affairs
  • DEWRSB - Department of Employment, Workplace Relations and Small Business
  • DHAC - Department of Health and Aged Care
  • FaCS - Family and Community Services
  • HACC - Home and Community Care
  • HCSMC - Health and Community Services Ministerial Council
  • JPET - Jobs Placement, Employment and Training
  • JPP - Jobs Pathways Program
  • MCEETYA - Ministerial Council on Education, Employment, Training and Youth Affairs
  • NSW - New South Wales
  • NYARS - National Youth Affairs Research Scheme
  • QLD - Queensland
  • SA - South Australia
  • UK - United Kingdom
  • VIC - Victoria

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Executive Summary 

This report is the final component of the Young Carers Research Project undertaken by Carers Australia, with funding from the Commonwealth Department of Family and Community Services.

The Project Background Paper and Focus Group Study (available from Carers Australia, phone (02) 6282 7886) provided many alarming findings about the growing group of children and young people with caring responsibilities that have received little community recognition and had very limited attention by policy makers, researchers and service providers. It is estimated that:

  • There are 388,800 carers under the age of 26 years in Australia and 18,800 of these are primary carers (see Appendix 1 for ABS definitions of carers);
  • 17% of carers in Australia are under 26 years of age; and
  • 6-10% of young people under 26 years of age in Australia are informal carers.

These figures are likely to be a significant underestimate due to the number of 'hidden' carers and are projected to increase along with increases in the prevalence of disability. The number of young primary carers, who often have to fulfil all caring responsibilities with little support, is also likely to rise with increases in the prevalence of sole-parent households.

The available data shows that these carers predominantly care for their mother who has a physical disability or mental illness. Their care involves undertaking intimate care tasks, assisting with mobility and medication, providing emotional support, completing housework or any other tasks that are required. Available data demonstrates that young primary carers provide the same level of care as older primary carers. Little data has been collected on the amount of time spent by other young carers, however the literature suggests that unlike their peers, young carers spend most of their time either directly providing care or thinking about the person they support. This highlights the need for young carers to be seen and included as a significant group within the wider framework of all carers and informal caring. However the unique vulnerabilities of young carers because of their age distinguish them from other carers and need to be specifically addressed.

Young carers are often found in sole-parent families and it appears they often provide care because they are the only ones available to fulfil this role at home. They are offered little choice about their role, but once given the responsibility, most young carers seem to embrace it and want to continue to provide care for as long as it is needed.

Policy makers and service providers need to recognise the commitment and compassion demonstrated by these young people and respond in ways that respect and support their role. Many young carers mention the valuable skills they gain from caring and the close relationships they can form as a consequence of caring. These strengths should form the basis of policy and service responses to young carers and their families.

However, the literature and data has found that the caring role has the potential for significant and pervasive negative effects on young carers, including reduced life choices and limited future opportunities. Aside from the indicators of poor physical and mental health, the most stark demonstrated evidence of the negative impact of caring is the fact that young primary carers are at serious risk of leaving school early. ABS statistics indicate that approximately 60% of young primary carers between 15-25yrs are unemployed or not in the labour force (compared to 38% for the general population in this age group) and only 4% of young primary carers aged 15-25yrs are still at school (compared to 23% for the general population in this age group).

Appropriate support has been found to dramatically improve young carers' lives and decrease the negative effects that are directly attributed to their caring role. However, Australia's current service system appears to have too many barriers for the provision of effective service responses to these often unidentified and isolated young people. The literature and available data demonstrated that many young carers receive no support at all. For example, although many young carers identify a need for respite, 98% of young primary carers aged between 15-25yrs had never accessed this type of assistance. For this reason the development of young carer specific programs is often cited as being crucial in any service responses to young carers. Unfortunately, unlike the UK where there are over 100 of these programs in operation, there are only a few programs operating in a few regions of Australia. All of these programs are severely under funded and are unable to meet the full range of young carers' diverse needs.

The findings from this research project have indicated that a range of policies and programs are required to address the needs of young carers. Many effective government programs already exist that could potentially benefit young carers. However, these programs require better targeting, more flexibility or other minor adaptations for young carers to access them and receive effective responses.

The key issues for children and young people with caring responsibilities and their families are relevant to a number of Commonwealth portfolios and programs within particular departments. Therefore cohesive policy and program development across Commonwealth portfolios and co-ordination between Commonwealth, State and Local Government and the non-government sector is required.

This report outlines ten key outcomes identified by the key stakeholders who participated in the project. Taken together, these outcomes provide the comprehensive result required for all the key issues for children and young people with caring responsibilities and their families to be addressed. These outcomes are:

  • Widespread programs and services specifically targeted to children and young people with caring responsibilities and to their families
  • Specification of children and young people with caring responsibilities and their families as key client target groups of relevant mainstream services
  • Effective responses from key professionals to children and young people with caring responsibilities and to their families
  • Adequate income support for children and young people with caring responsibilities and their families
  • Participation of children and young people with caring responsibilities in education, training and employment at rates approaching those of their peers who do not have caring responsibilities
  • Regular opportunities for social participation for children and young people with caring responsibilities and for their families
  • Commitment to a whole-of-government approach to address the key issues for children and young people with caring responsibilities and for their families
  • Priority research status for children and young people with caring responsibilities and their families to generate sound quantitative and qualitative research information
  • Improved understanding of the needs of children and young people with caring responsibilities within their own families
  • Increased community awareness of the needs of children and young people with caring responsibilities and of their families

These outcomes are tangible and achievable; they would result in young carers realising their potential by enjoying full social and economic participation in the community in which they live.

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1. Introduction 

This Report is the final component of the Young Carers Research Project undertaken by Carers Australia, with funding by Commonwealth Department of Family and Community Services. Impetus for this project arose from growing concern among a number of key stakeholders about the lack of recognition of young carers in Australia and the limited understanding of their situation. In addition, it was acknowledged that a national co-ordinated approach to effectively address the needs of young carers and their families should be based on sound research and the best available information.

The purpose of the Young Carers Research Project was to research the number, characteristics and needs of young primary carers in relation to facilitating their social and economic participation in the community. In particular the research project was to address the following questions:

  • How many young primary carers are there in Australia?
  • What are the characteristics of young primary carers in terms of their age, where they live, what level of care they provide and to whom, the income level and financial security of their families and for how long they have been/will be caring?
  • What are their needs in regard to ensuring social and economic participation in the community and which of these are being met and by whom?
  • What are the gaps in helping young carers make the transition into the workforce, education or training and how might these best be addressed and by whom?
  • What is the best way to engage the most appropriate people/groups to fill the identified gaps in regard to participation in employment and/or education and training?

This Final Report draws on information contained in the two earlier reports completed for the project, the Background Paper and Focus Group Report, and focuses on:

  • Highlighting the key findings of the Background Paper and Focus Group Report;
  • Summarising the key issues emerging from these reports; and
  • Outlining well grounded future directions for policy, research and program development which aim to address the needs of children and young people who are carers, assist them to reach their potential and facilitate their social and economic participation in the community in which they live.

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2. Definition of the Target Group 

The target group for this research paper is young primary carers. For the purposes of this research:

A young primary carer is someone up to 25 years of age who is the main provider of care and support for a parent, partner, child, relative or friend who has a disability, is frail aged, or who has a chronic mental or physical illness.

There are currently many different definitions of young carers being used in Australia and overseas. This research project was somewhat unique, in that it included young carers over 18 years of age and focused on those with primary care responsibilities.

The research and data that was available for this study was severely limited. In the early stages of the research it became clear that access could be gained to key quantitative data from the ABS on primary carers, but none of the qualitative research available distinguished primary carers from their peers who had significant caring responsibilities. Research studies available indicated that all young carers shared similar issues and needs and that rather than only focus on primary carers, it may be more useful to distinguish carers by their age and developmental stages, the impact of their caring responsibilities on them and their families and the level of support available to them. Therefore where possible, this project elicited data on primary carers, but in the general text it would have been inaccurate to restrict the discussion and findings only to primary carers.

Throughout this report, the term 'young carers' is often replaced by the phrase, 'children and young people who have caring responsibilities'. This description explicitly acknowledges that the large age group includes children. It also indicates research needs to focus on key sub-groups for the study of different needs and issues associated with critical developmental and transitional life-stages which children and young people encounter.

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3. Methodology 

The methodology used for this research project reflected the limitations of it being a time-limited scoping study into a topic that up to now has been scarcely researched in Australia. Therefore the priority was to collect all available material; only a small amount of time was invested in generating new information. A researcher was employed for six months to complete the study and reported to a Reference Committee comprised of representatives from Carers Australia and the Commonwealth Department of Family and Community Services.

The research project attempted to work within a collaborative framework and to include the wealth of information and ideas held by current stakeholders concerned with young carer issues. A stakeholder workshop was held at the beginning of the project to review the research questions, identify key issues and enable participants to provide relevant views and information.

It was recognised that this study could not adequately research some sub-groups of the young carer target group, such as the specific needs of Indigenous Australians, those from other culturally or linguistically diverse communities and those living in rural and remote regions of Australia. Therefore, the stakeholder workshop recommended that these issues be highlighted as in need of further, more detailed research.

Phase one of the project was the production of a Background Paper. This paper aimed to collect and analyse available Australian and international literature and quantitative information and provide information on current services available to young carers. An extensive literature and data review was conducted. This included requesting unpublished information from ABS, AIHW, state and territory Carers Associations, 'Condition Specific' organisations, various government departments and Centrelink.

Constraints were placed on the project by the limited amount of literature and data available. This resulted in the project relying primarily on data gained from the 1998 ABS Survey of Disability, Ageing and Carers. This data did not allow for breakdowns of information for different age groups within those up to 26 years of age. In addition, all of the literature available used different definitions of young carers, making it difficult to compare results, and the majority of the research available had been conducted in the UK.

Phase two of the project was a small qualitative study, with three focus groups of young primary carers. The groups were divided into age groupings of under 12, 13-18 and 19-25 years and were held in Canberra and Sydney. These groups provided an insight into the opinions, experiences and needs of young primary carers in Australia.

An incomplete draft Final Report was then produced which incorporated the key findings and issues emerging from the two earlier reports and posed possible future directions for young carer policy, research and service delivery. This draft Report was reviewed and further developed at a second Stakeholder Workshop held a month before the project's completion. Additional opportunities were also given to workshop participants to provide detailed comments before the report was finalised.

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4. Findings of the Research 

The key findings of the research can be found on the following pages. These findings provide important data and information on young carers in Australia, and in particular the:

  • Number of Young Carers
  • Characteristics of Young Carers
  • Effects of Young Caring
  • Needs of Young Carers
  • Current Barriers to Service Access

A more detailed presentation, including the research sources for the key findings, can be found in the Background Paper and Focus Group Report. Both reports are available from Carers Australia.

4.1 Number of Young Carers

The table below shows that there are approximately 388,800 young carers in Australia.

18,800 of these carers are primary carers (the main provider of care and support to their friend or family member).

Age Primary Carers All Carers Population
Under 15 2,900 105,500 3,911,400
15-17 3,000 75,600 822,100
18-25 12,900 207,700 2,131,200
0-25 Total 18,800 388,800 6,864,700

Source: 1998 ABS Survey for Disability, Ageing and Carers (unpublished data)

Important facts from the 1998 ABS Survey data:

  • Approximately 1 out of 10, that is, 10% of young people aged 15-25 years in Australia are carers.
  • Approximately 6% of all people under 26 years of age in Australia are carers.
  • 1 out of 6 carers in Australia (approximately 17%) are under 26 years of age.

It is important to note that all of these figures are likely to be significant underestimates due to the number of unidentified or 'hidden' carers in the community.

These figures are also projected to increase, along with other trends that influence the number of children and young people who provide care to family members or friends, such as:

  • The number of sole-parent households;
  • The increasing prevalence of disability and illness in our community; and
  • Australia's ageing population.

(For more detailed information on factors and trends that influence the number of young carers see the Background Paper pp. 16-18).

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4.2 Characteristics of Young Carers

Ages:

  • In Australia, young carers have been identified by services as being as young as 6 years of age, and just under half of young carers are below 18 years of age.
  • For young carers aged under 18 years, their average age is likely to be 12 or 13 years.
  • Over two thirds of young primary carers are aged over 18 years of age.

Gender:

  • Females are only slightly more likely to become young carers than males.
  • Two thirds of those young people taking on the primary carer role are females.

Cultural Background:

  • Young carers are generally representative of the general population in their cultural background.

Where They Reside:

  • Most young carers and young primary carers reside in NSW, Vic or Qld. However, young carers form about 6% of the youth population in all States and Territories.
  • Probably between one third and one half of all young carers live in rural or remote areas.

Level of Care Provided:

Young primary carers are required to perform the same caring tasks as older primary carers.

  • Most young carers provide emotional support and they are also likely to be assisting with tasks such as mobility, provision of medications, housework and intimate care tasks.
  • Young carers spend most of their time providing care or thinking about the person they support.

Who Care Is Provided To:

  • Over half of young primary carers are caring for a parent. This parent is more likely to be a mother and the family is also likely to be a sole-parent household.
  • A third of young primary carers care for their own child or partner.
  • The person for whom care is provided will more than likely have a physical disability or illness.
  • Approximately one quarter of young carers provide care for someone with a mental illness. This figure is likely to be an underestimate.

How Long They Have Been and Will Be Caring For:

  • From the data available it is very difficult to say for how long young carers provide care. However we do know that some start a very early age and that they may be the only available person to provide care for the duration of the person's illness or disability.

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4.3 Effects of Young Caring

Health and Wellbeing:

  • Young carers are at risk of poor physical health due to many factors including stress, limited sleep and inappropriate or incorrect lifting and carrying.
  • Mental health can also be affected in the short and long term due to impaired psychosocial development, low self-esteem and unresolved feelings of fear, worry, sadness, anger, resentment and guilt. These feelings may contribute to depression and emotional breakdown later in life.

Social Participation:

  • Young carers often become alienated and isolated due to the physical and emotional demands of their caring role, their families' limited income and the limited 'spare time' available to them.
  • Young carers are also less likely to have meaningful friendships due to the demands of caring, their belief that they cannot trust people and talk to them about their caring role, the social stigma and misunderstanding in the community associated with illness and disability.

Family Relationships:

  • Young caring often creates a unique and lasting bond between the carer and the person they support. However, relationships with other members of the family can be negatively affected and become strained.
  • For young carers entering adolescence, family relationships often become more complex and difficult and can be further complicated by the caring role.

Financial Security:

  • Young carers are severely limited in their access to employment or social security payments. Therefore young carers are usually reliant on their families for financial support. The majority of these families are dependent upon inadequate social security benefits and experience poverty.

Education, Training and Employment:

  • Young carers frequently miss school because of their caring responsibilities; they have no time to complete homework, feel worried and distracted when they are at school and experience limited connectedness with their school community.
  • Only 4% of young primary carers, between the ages of 15-25yrs are still at school, compared to 23% of the general population (estimate from 1998 ABS Survey of Disability, Ageing and Carers unpublished data).
  • 60% of young primary carers, between the ages of 15-25yrs are unemployed or not in the labour force, compared to 38% for the general population in this age group (estimate from 1998 ABS Survey of Disability, Ageing and Carers unpublished data).
  • The literature and data indicate that many young primary carers are 'at risk' of not making successful transitions into the workforce.

Transitions into Adulthood:

  • As a direct result of caring, young carers can gain independence and many skills that can assist them in the future.
  • Choices and opportunities for the future are severely limited by the caring role. Carers are often unable to leave the family home, gain employment and/or financial independence, or commit to intimate relationships.

Note: For more details on these research findings and their sources, please see Background Paper.

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4.4 Needs of Young Carers

  • More opportunities for accessing peer support.
  • The provision of ongoing young carer programs in local areas, providing opportunities for children and young people with caring responsibilities to build informal support networks and receive services that are tailored to their needs. (These programs need to be based on clear protocols and principles that reflect the rights of young carers and their families.)
  • Widespread community awareness, recognition and understanding of their role to allow for easier identification and better responses to their needs.
  • Community education about disability and illness in general to foster understanding and acceptance and reduce the effects of stigma.
  • Health professionals who acknowledge and include young carers in their family members' health and care plans (including hospital discharge) and provide them with more age-appropriate and culturally appropriate information on disability/illness, how to provide the best possible care, their rights and services available. Key health professionals, both hospital and community based include: doctors, nurses, specialists, psychologists and psychiatrists.
  • Schools and an education system that is more understanding and provides options for young carers to reach their full potential. These options need to be explored further, but could include: better linkages with community support services and parents, promoting more supportive environments, homework assistance programs, career counselling that is tailored to their situation, provision for out-of-school learning and assessment, provision for leave or time-out from school without penalty, more flexible timetabling and scholarship programs.
  • Flexible work environments and targeted transition to work and return to work programs.
  • Adequate Income Support so that families can meet their basic living costs.
  • Transport assistance for the purposes of assisting young carers in their caring responsibilities and also enabling them to access services, education, training and employment and to participate in key social networks.
  • Provision of regular, flexible and coordinated respite that meets young carers' needs. This may include: in-home or out-of-home respite that allows young people to gain independence and pursue necessary activities of school, work, rest and leisure without feelings of guilt and worry.
  • More family supports giving children and young people with caring responsibilities and their families access to counselling, outreach support, better medical services and more flexible home and community care services in their local communities.
  • Appropriate forms of service delivery, resources and information for young carers from rural or remote areas and those of a different cultural background including Indigenous Australians.
  • A key worker or agency that can manage and/or provide continuity of support through children's and young people's developmental and transitional stages and important life events.
  • Resources providing appropriate options for children and young people with care responsibilities and their families that can be readily accessed throughout their lives.
  • Access to the Internet and young carer specific web pages to gain information, maintain support networks and receive support and assistance.

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4.5 Current Barriers to Service Access

  • Many Carer, Health or Disability Services do not seem to be aware that young carers exist. In the majority of cases services in these areas are promoted and provided to meet the needs of adult family members and ignore or treat with insensitivity the unique and diverse needs of children and young people who have caring responsibilities.
  • Professionals in fields of Health, Welfare and Education do not know how to identify young carers and even if they are identified these professionals are unaware of their unique and diverse needs or how to meet them.
  • Young carers and their families may not have access to information, transport and/or the money required for them to access some services.
  • Young carers have conflicting demands of work, school and their caring responsibilities. This means they often do not have time to follow up and access some services and they often are unwilling to place their own needs ahead of those for whom they provide care and support.
  • Young carers need to arrange alternative care for their family member before they can access some services. This is often not possible to arrange and respite services are rarely able to meet the unique respite needs of children and young people.
  • Young carers are often 'at risk', yet excluded from programs. Young carers are not listed as a specific target group for any services or programs in Australia (except a small number of young carer programs operating in some locations). Often they are excluded from youth programs because they are not identified as being 'at risk', when the findings of this research clearly shows that they are.
  • Social Security legislation which restricts those who are working or studying more than 20 hours a week from receiving a Carer Payment, severely limits the ability of young carers of school age to be granted this payment or receive Income Support that recognises their financial reality.
  • Young carers often rely on adults to navigate what they perceive to be complex service systems. However, parents may be reluctant to seek support or assistance for the fear that Child Protection agencies may become involved or simply because they see that their care requirements are a private family matter. Families often prefer to receive care from within their own family and they may think that asking for help may be perceived as a sign of weakness.
  • Young carers often feel that they cannot trust anyone enough to ask for help or discuss their problems. They feel that they will not be listened to or believed and that information will not be treated with confidentiality.
  • Additional barriers are also faced by those living in rural or remote communities. These include: lack of services easily accessible in their area, limited or no access to any form of appropriate transport and social attitudes and perceptions, such as the need to be self-reliant, which can inhibit people from accessing support or assistance.
  • Additional barriers for young carers from culturally or linguistically diverse backgrounds include: communication or language barriers, different understandings of disability, illness and caring, culturally insensitive workers and services including the stereotypical beliefs many people hold about different communities.
  • Indigenous Australians also face many similar barriers including: cultural insensitivity of services, fear of lack of confidentiality, mistrust of services and inappropriateness of the service system.

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5. Key Issues Emerging from the Research 

5.1 Young Carers – A Significant, Vulnerable and Disadvantaged Group

The literature and data has demonstrated that young carers are a very diverse group of people who make up 1 in 6 carers in Australia and 6% - 10% of Australia's children and youth population (ABS 1998 Survey of Disability, Ageing and Carers unpublished data).

Current figures show that 1 in 10 young people aged between 15 and 25 years in Australia have caring responsibilities for someone who is frail aged, has a disability or chronic mental or physical illness (1998 ABS Survey of Disability, Ageing and Carers unpublished data).

We also know that all of these figures are likely to be a significant underestimation due to the numbers of children and young people with caring responsibilities who are 'hidden' in our community.

As they are a diverse group, all of these children and young people have different needs and levels of disadvantage and vulnerability. However, the literature and data has overwhelmingly demonstrated that as a direct consequence of their caring role, the majority of young carers are at risk of all or some of the following:

  • socio-economic disadvantage;
  • isolation;
  • low levels of health and emotional wellbeing;
  • impaired psychosocial development;
  • limited friendships;
  • difficulties when engaging in intimate relationships;
  • low participation and attainment in school and employment;
  • difficulties in making transitions to independence; and
  • a significant lack of opportunity and choices.

(For detailed research findings and statistics on the impacts and effects of young caring please see the Background Paper).

'I'd be going to school thinking: is she going to be at home when I get home, should I even be going to school. I mean the majority of the time I didn't because of that' ~ Quote sourced from Focus Group Study

Some of the figures and anecdotes mentioned in the literature were quite astonishing.

For example the 1998 ABS Survey for Disability, Ageing and Carers (unpublished data) found that approximately:

  • 60% of young primary carers aged 15-25 years of age are unemployed or not in the labour force (compared to 38% for the general population in this age group); and
  • Only 4% of young primary carers aged 15-25 years are still at school, compared to 23% of the general population in this age group.

These figures indicate that young primary carers are at a much higher risk than the general youth population of not making successful transitions into employment and gaining financial stability and independence. In fact, young primary carers have educational and employment participation rates comparable to or worse than other youth sub-groups commonly recognised as being among the most marginalised and 'at risk' populations in Australia.

For example, young people from non-English speaking backgrounds have similar educational and employment participation levels to the general community (McClelland & MacDonald,1999). Those subgroups faring a lot worse, who probably have participation rates more comparable to primary carers include:

  • Homeless young people: The majority of young homeless people do not participate in education at any level and 52% of homeless young people aged 15-19 years and 47% aged 20-24 years are unemployed (Council to Homeless Persons,1998:1-2); and
  • Young Indigenous Australians: In 1994, 50% of Indigenous Australians aged 15-19 years of age were unemployed (McClelland, MacDonald & MacDonald,1998:14) and for 20-24 year olds 43% of Indigenous males and 50% of Indigenous females were unemployed (McClelland & MacDonald,1999).

These figures also highlight the possible double disadvantage faced by young primary carers who are from minority groups such as Indigenous Australians.

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5.2 Perceptions Affecting Policy and Service Responses to Young Carers

This research project has taken many of the current debates on 'young carer' issues to a national level. Many of these debates have been informed by people's perceptions of young carers. This research project enables these perceptions to be re-examined using knowledge gained from research, discussions with service providers and direct dialogue with young carers.

5.2.1 Identifying Young Carers

Young carers remain a hidden and unsupported group in Australia. Key contributing factors to this appear to be:

  • A complex range of social and cultural values, beliefs and attitudes that result in a lack of self-identification; and
  • A general lack of awareness of young carers by: the government, key professionals in sectors such as health, welfare, community care, education and disability and the wider community.

The literature review indicates that implicit low incidence of self-identification and identification by key professionals is directly linked to the need for heightened community awareness and increased sensitivity to and understanding of the issues and needs faced by young carers and their families. Major changes need to occur in the current policy and service delivery climate to ensure the positive early identification of young carers and to increase the capacity and willingness of children, young people and their families to self-identify in a manner which is both empowering and rewarding.

Children and young people with caring responsibilities are a potentially easy group to identify, as they and their families have significant contact with key sectors, particularly the health, community care, welfare and education systems. However because they are young, they are often completely ignored:

'The doctor would never tell us that she had gone into hospital, we would be at home and not know where Mum was…then we would get a call…we would have to pack our bags, ring friends and relatives and go' ~ Quote sourced from Focus Group Study

'I get no information on her illness, I don't know what's going on' ~ Quote sourced from Focus Group Study

Who exactly are 'young carers'? Currently many different definitions of young carers are in use across Australia. Some definitions exclude those caring for someone with a substance abuse problem, those aged over 18 years of age, those caring for a partner or their own child and those who are not seen to provide significant or primary care.

In defining young carers and deciding who will be 'included' and/or 'excluded' from particular services or research endeavours, the important questions that need to be considered are:

  • What do these groups of people have in common?
  • Can we confidently state that one sub-group is significantly more 'at risk' or 'in need'?
  • Are their needs being met by anyone else?
  • What are the particular needs or responses required by some groups?
  • Do the way programs are defined, structured, promoted and delivered inadvertently exclude some groups such as those who are from culturally or linguistically diverse backgrounds, Indigenous Australians or those from rural or remote communities?

In answering these questions, it is vital to involve children and young people who have caring responsibilities and their families. Young carers and their families have been ignored and have remained silent for too long. Therefore, the onus is on policy and program makers to find innovative ways of directly including the views and perspectives of young carers and their families and to develop policies and programs that reflect what young carers and their families say they need.

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5.2.2 Appropriate Responses by Formal Services

The recognition of the rights and needs of young carers is required in policy and service responses. These rights are outlined in the UN Convention on Rights of the Child, to which Australia is a signatory, and other pieces of legislation, including Child Protection legislation in different states and territories, HACC legislation which defines carers as a target client group, the Commonwealth Disability Discrimination Act and some state Anti-Discrimination legislation. Some groups would argue that children and young people with caring responsibilities should be covered more adequately in all relevant legislation. More informed discussion is needed to determine whether changes to existing legislation and legislative guidelines are required.

Even when the rights of children as carers is a basis for practice, there is considerable uncertainty about what constitutes appropriate policy intervention and service responses for young carers. Many professionals are seeking a balance between protecting children and young people from inappropriate caring responsibilities and taking active measures both to support them to continue their caring role and when necessary, to support them after their caring responsibilities cease.

It is vital to recognise that although caring tasks may well be inappropriate and can negatively affect a child's health and wellbeing, young caring does not in itself necessitate the involvement of Child Protection Agencies. In fact, it would be rare that protective concerns would exist after identification of young caring, if families were provided with sensitive and helpful strategies to increase their awareness, options and capacity to cope with their often unavoidable circumstances. This reinforces the need for sensitive early identification of children and young people who are carers and also the need for professionals in agencies relating to child protection to be aware of and sensitive to the issues and needs of young carers and their families.

Once identified, many feel that by labelling children and young people as 'young carers' we further entrench or constrain them into their caring role when they most likely had no choice about fulfilling it in the first place. However, the Focus Group Study indicated that this was not a problem to the young carers themselves. In fact, the Focus Group Study reinforced the need for policy makers, researchers and service providers to have a more balanced conception of young caring that acknowledges both the potential positives and the negatives of the caring role.

Being called a young carer 'gives me identity in my role, what I do at home, not just to speak out to other people, but also in myself…to find that identify is amazing and good' ~ Quote sourced from Focus Group Study

It seems that when given the opportunity, young carers clearly articulate the wish to remain in their caring role. They want this role to be recognised and they want to be treated with respect. Although they outline the many positives associated with caring, they also lament the missed opportunities and experiences that are a direct consequence of their caring.

Young Carers' views on caring:

"I wanted to do it (care). And I did it. And I did it because I loved her"
"I've learnt things that people don't learn till they're 50 years old and I've learnt it at the age of 17, I can use this for the rest of my life, all of these tools"
"Being a carer is a contradictory lifestyle: trying to balance things all the time, there's two sides to every decision you make"

~ Quotes sourced from Focus Group Study

It is also important to situate young caring within the wider framework of all carers and informal caring. We then begin to recognise that:

  • even with increased and widespread changes to improve Home and Community Care (HACC) and disability services, care is still going to be required from available family members in the home; and
  • the changing composition and formation of families, including increasing numbers of sole-parents and of people with illness or disability becoming parents, means that in many cases children and young people will be the only ones available in the home to provide this care.

Therefore policy makers and service providers need to provide young carers with the recognition and respect they seek and to develop policies and programs which uphold their rights as children, young people and carers. This would include working in ways that:

  • Respect and support their caring role;
  • Recognise the existence of their unique family relationships and strengths;
  • Provide all family members with information on their rights and options and increase their awareness of the possible effects of young caring; and
  • Explore and provide flexible, realistic strategies and supports in their own communities that address the rights and needs of all family members and aim to reduce the negative effects of caring.

It is only in doing this that workers can hope to gain the trust of young carers and their families and begin to build on the coping mechanisms and support foundations that they may have already established for themselves in their local communities.

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5.3 Current Service Responses to Young Carers

5.3.1 Mainstream Service Responses

Unfortunately, any discussion surrounding current service responses to young carers must start with an outline of the inadequacies of the service system as it currently exists in Australia. The literature and current service review completed for the Background Paper clearly demonstrated that children and young people with caring responsibilities and their families face many barriers in accessing or receiving appropriate services.

For example, although many young carers and their families express a need for respite care, the 1998 ABS Survey into Disability, Ageing and Carers found that a staggering 98% of young primary carers aged 15-25yrs had never used a respite care service. The Focus Group Study also revealed that many young carers needed to talk about their feelings and other issues faced at home and at school, but they would not seek assistance because they felt they could not trust the confidentiality of available family members, teachers or school counsellors. (For more details on current services available and young carers access to these please see the Background Paper).

The many barriers faced by children and young people with caring responsibilities and their families in accessing services can be summarised as stemming from:

  • pervasive lack of awareness and sensitivity to young carers issues and needs;
  • inflexibility of mainstream services to respond to young carers;
  • limited number of services that target young carers as clients; and
  • the complexities, demands and disadvantages associated with the young carer role. These include lack of transport, finances or more complex dilemmas such as young carers being so consumed in helping others that they are reluctant to admit they have feelings or needs of their own.

Kelly's Mum was involved in a car accident when Kelly was 10 years old. Since this time Kelly has been the primary carer for her Mum. Kelly also has a little sister living at home, but as Kelly says, "I care more for her than she helps me care for Mum". Kelly admits that she takes on all of the caring role by herself and that she gets very little support. "I am to busy with important stuff to think about anything else". Once, when Kelly did ask for help, when her Mum was leaving hospital, she said "no doctors would explain anything, I kept asking, but I just kept being told that 'she's fine'. But when she came home she wasn't fine…and I was scared, I did not know what to do or how to help her". Kelly thinks she is ignored because she is to young, so now she copes on her own and keeps her feelings to herself, even though she constantly feels worried or guilty whenever she is not able to be with her Mum. She adds, "its hard to trust people…and I can care better for her than the nurses anyway…it's just a job to them"

This story is based on a young carer who participated in the Focus Group Study. Some details have been changed, so as to protect the anonymity of the young person.

The research findings indicated that unless services are specifically targeted to them, children and young people with caring responsibilities will not access them. Mainstream services need to be vigilant in ensuring that appropriate measures are taken so that young carers and their families can have ease of access to services they desperately need. In doing this, services need to include young carers and their families as key target client groups. This relies on policy makers and program managers recognising the fact that children and young people who are carers are a significant 'at risk' or 'high need' group of the youth population.

5.3.2 Specific Young Carer Service Responses

Adapting the current service system and ensuring that mainstream services are more accessible and responsive to young carers and their families is of the upmost importance. However, both the literature reviewed and the focus groups conducted for this research project suggest a key way to meet the needs of young carers is by designing specific programs for them. One of the distinct advantages of specific programs is that they enable young carers to build up peer support networks - a key source of mutual support, assistance and friendships.

"The only thing that has ever reached out to me and been there is the [NSW] Carers Association…the camps and even just the newsletters…and the contacts you get…I know if I am having a bad day I can ring this person" ~ Quote sourced from Focus Group Study

However, there are very few specific services for young carers in Australia. Some states and territories have no young carer programs at all. New South Wales, Australian Capital Territory and South Australia are the only states or territories developing state or territory wide coordinated, but localised services to young carers. However, these programs are severely restricted by insecure and inadequate levels of funding and tend to be limited to the provision of social/recreational activities, annual camps and raising awareness in local communities. One of these programs offers a respite service specifically for young carers which has demonstrated clear benefits.

These programs are extremely useful in providing time-out, peer support and access to activities that young carers would otherwise miss out on. However, there is a small group of young carers and their families who require more intensive, packaged support plans. Arguably, at present, none of the current specific services are able to meet the full range of young carers' diverse needs.

"We all feel comfortable around each other, so maybe we could have more groups like this, more chances for the young carers to get together and talk instead of just going on camps" ~ Quote sourced from Focus Group Study

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5.4 Areas for Policy and Service Development

From the information available it is clear that more resources and flexibility is needed to allow:

  • existing programs to be more accessible and responsive to young carers needs; and
  • the development of appropriate models of support which can respond to all of young carers' specific and unique needs.

The literature available suggests many possible ways of progressing in these areas and it is important to review this information to inform future directions.

5.4.1 What We Can Learn From Overseas

The UK probably has the most comprehensive policy and service responses for young carers in the world. However, due to their very different population base and legislative, policy and service delivery frameworks, it would be unwise to make too many direct comparisons and assume that what has been applied in the UK could be replicated in Australia. What we can do is examine what they have achieved, how they have done this and what has been most effective in their responses to young carers. Currently in the United Kingdom:

  • there are over 100 young carer programs
  • a research body based at Loughborough University provides research and evaluation in the area of young carer issues
  • young carers are covered by two separate pieces of legislation that stipulate an assessment of their needs
  • recently a Young Carer Festival was held which bought together over 1200 young carers from across the UK
  • mainstream studies on youth and the early school leaving rate identify young carers as one of the groups most 'at risk' and in need of service responses. (Dearden & Becker,UK1998; Commonwealth Department of Education, Training and Youth Affairs, 2001:19)

In the UK many young carer programs "have extended beyond simple awareness raising strategies…Projects tend to be demand-led and provide services to meet needs identified by young carers themselves. All of the projects offer the basic service of the provision of information and helping young carers to access practical support. Other services include counselling and advocacy…leisure activities and respite are also offered by many projects. Activities are generally designed to be fun and offer 'time out' from caring" (Aldridge & Becker,UK1998:6).

Children from the UK talking about the benefits of their Young carer Project:

"Providing me with a social life, friends and an 'outside' support not tied to home or school"
"It helps me chill out and talk about things that I find hard at home"
"It helps me get away for a break and do not have to explain to people at the Young carers Club about my Mum"

~ Quotes sourced from: Young Carers Festival, 2000

Voice: Review of the first Young Carers Festival 2000

One of the most common forms of informal counselling or support in Young Carer Programs across the UK are befriending services, "where young carers can simply talk to an understanding friend who will not judge them, but will be a sympathetic listener" (Aldridge & Becker,UK1998:6). These services have been evaluated as extremely effective for young carers.

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5.4.2 Overcoming Gaps That Have Emerged in Australia

Young carers have well and truly 'fallen through the cracks' of policy and service development in Australia. No one government department or community organisation has taken responsibility for meeting their needs. Young carers are not the clear responsibility of health and disability services or children and youth services. The literature has referred to professionals in these areas as being too specialised and unaware of how to identify young carers and respond to their unique needs.

Another clear gap that has emerged in the current service system is the lack of policies and useful tools and models of service that could aid the early identification of children and young people who have caring responsibilities.

Currently, in the community there are stereotypical views about caring being an activity done by older people and that Carers Associations are only interested in issues affecting older people. This is an inaccurate perception, as most carers are of workforce age and the work of the Carers Associations focuses on a broad age range. However, the reality is that most carer services and programs in Australia, including HACC services, are adult focussed and often totally ignore the existence and needs of children and young people who are carers.

With young carers making up 17% of carers in Australia, all carers services, and most particularly, HACC services and Carers Associations have a responsibility to recognise children and young people as an important client group and provide them with effective advocacy and support.

However, it should not only be carer services that are providing advocacy and support to young carers. With young carers comprising up to 10% of the youth population, all youth, community, health and welfare mainstream services and programs also have an obligation to these children and young people.

Once this is recognised, comprehensive service responses could be developed across government and in local communities, which promote the early identification of issues and needs and provide appropriate support throughout the developmental and transitional life stages and critical experiences faced by children and young people.

We can learn from the effective responses of existing services for young carers. Although, there are too few in number to make a real impact on the status of young carers in Australia, their experiences have shown us that for these programs to be effective they need to:

  • receive adequate and on-going funding;
  • work collaboratively with other organisations to develop referral and support networks and increase the awareness and responsiveness of other services;
  • be based on clear protocols and principles that reflect the rights of young carers and their families; and
  • be provided in local areas, so local solutions can be found and local communities can build their capacity to provide effective formal and informal support networks.

In addition, it should be possible to learn from current initiatives in other areas such as health and youth work, to develop some innovative service responses that could reduce gaps in the current system and provide effective responses to young carers and their families. Some of the future initiatives could include working towards providing models of service delivery such as:

  • Providing packages of support that are actually designed to meet the needs of young carers and their families, instead of requiring the young carer to try to 'fit into' various programs designed for other needs.
  • Provision of outreach models, so as support or essential services (including education) can come to them.
  • A key contact worker or agency providing continuity of care and instigating partnerships with other agencies to provide a range of supports throughout periods of crisis and young carers' critical developmental and transition stages.

The Future Directions section will outline these possibilities and others, providing specific program ideas under key outcomes that the government and community should be aiming to achieve for children and young people with caring responsibilities and their families.

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5.5 Summary

This research project has identified that young carers are an extremely vulnerable and disadvantaged group in our community. As a result they are often at risk of experiencing poor physical or mental health, impaired psychosocial development, low participation rates in education, training and employment, difficulty and delay in gaining independence and a general lack of choice and opportunity which significantly increases their chances of being economically and socially marginalised.

As young carers are a new group for policy, research and service provision, there are many assumptions and perceptions about them that need to be addressed. There is also uncertainty and some controversy about the best way to respond appropriately to them and their families. In formulating appropriate responses, it is important to remember that young people may be the only ones available to provide care and that although they have been offered few options, most young carers want to continue to provide care.

However, at present, the current service system and low number of under-funded young carer programs across Australia are not identifying or meeting the diverse range of young carers' needs. Therefore, it is vital to find ways to increase the low levels of early identification of young carers, including facilitating supportive environments that would encourage self-identification. We also need to break down what many young carers and their families perceive to be the insurmountable barriers to service access. It is only then that families can receive appropriate supports and assistance.

This research project found that a key way to assist young carers and their families, is to provide more resources and flexibility to ensure:

  • Existing programs are inclusive of and more accessible and responsive to young carers needs; and
  • The development and sensitive delivery of appropriate models of support with realistic strategies and options for young carers and their families, that meet their unique needs and are provided in their own communities.

It is essential to examine available information and evidence to develop constructive ways of moving forward and creating communities where children and young people who are carers are recognised, respected and provided with the opportunity to reach their full potential.

Finally effective Australian responses to young carers and their families need to be based on accurate and up-to-date Australian data. Priority research status for children and young people with caring responsibilities and their families is needed to generate sound qualitative and quantitative research information.

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6. Future Directions 

This section outlines the 10 key outcomes identified in this project as necessary for children and young people with caring responsibilities to have full social and economic participation in their community and reach their potential. These outcomes are:

  • Widespread programs and services specifically targeted to children and young people with caring responsibilities and to their families
  • Specification of children and young people with caring responsibilities and their families as key client target groups of relevant mainstream services
  • Effective responses from key professionals to children and young people with caring responsibilities and to their families
  • Adequate income support for children and young people with caring responsibilities and their families
  • Participation of children and young people with caring responsibilities in education, training and employment at rates approaching those of their peers who do not have caring responsibilities
  • Regular opportunities for social participation for children and young people with caring responsibilities and for their families
  • Commitment to a whole-of-government approach to address the key issues for children and young people with caring responsibilities and for their families
  • Priority research status for children and young people with caring responsibilities and their families to generate sound quantitative and qualitative research information
  • Improved understanding of the needs of children and young people with caring responsibilities within their own families
  • Increased community awareness of the needs of children and young people with caring responsibilities and of their families

Each of these outcomes is presented with:

  • Key research findings;
  • A broad strategy;
  • Related goals (from which performance measures could be developed); and
  • Options for the future (those presented were identified and agreed upon by stakeholders involved in the project but are not the only options available).

Although outlined separately, the outcomes are not mutually exclusive. Cohesive policy and program development across Commonwealth portfolios and coordination between Commonwealth, State and Local Government and the non-government sector is required for the 10 key outcomes to be achieved.

Evidence that this whole-of-government approach is effective can be found in a number of recent key government initiatives that have the potential to provide more opportunities and supportive environments for children and young people with caring responsibilities and their families. Some of these key initiatives include:

  • The Second National Mental Health Plan;
  • Commonwealth Government's Stronger Families and Communities Strategy; and
  • Prime Minister's Youth Pathways Action Plan Taskforce 'Footprints to the Future' Report.

The programs and supports emerging from some of these initiatives include the recent funding announced for Children with Parents Affected by Mental Illness. This program and other current and proposed programs in the key policy areas of health, disability, social security, education, employment, family, youth and community services may only require slight modification to be inclusive of and responsive to the needs of children and young people with caring responsibilities and their families.

Altogether the outcomes, goals, strategies and options for the future outlined below provide the foundation for the development of a comprehensive national policy and program framework for young carers and their families. These future directions are an exciting beginning. Carers Australia and the other key stakeholders who participated in the project wish to continue to work with the Department of Family and Community Services and the Commonwealth Government in the development and implementation of a national policy and program framework.

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6.1 Widespread programs and services specifically targeted to children and young people with caring responsibilities and their families

Key research findings:

  • Currently young carers only seem to be accessing services that are specifically targeted to them and that address their unique needs.
  • Peer support and young carer programs are extremely popular with children and young people with caring responsibilities and have been very effective in assisting them to harness their own support networks, have time-out and participate in activities that they would otherwise miss out on.
  • There are very few young carer programs in Australia and existing programs are generally drastically under-funded and under-resourced.

This outcome can be achieved by:

Establishing within an agreed national framework (when developed) a core recurrently funded 'Young Carer Program' in each state and territory under the auspice of each of the Carers Associations. These programs can provide resources and assistance and state/territory coordination to regional and local communities and groups to provide specific support services to young carers such as:

  • Respite Care
  • Peer Support
  • Family and individual counselling
  • Age-appropriate information, resources and referral networks
  • Advocacy to ensure access to mainstream services
  • Transport assistance
  • Recreational and social activities.

Related Goals:

  • Enhance the capacity of families and local communities to respond to the needs of children and young people who have caring responsibilities.
  • Meet the diverse and unique needs of children and young people who are carers and their families.
  • Offer children and young people who are carers and their families accessible service and program options that meet their needs.
  • Facilitate the building of informal peer support networks for children and young people with caring responsibilities and their families.
  • Facilitate a national data collection base with the capacity to generate key research information such as the number, characteristics and needs of children and young people with caring responsibilities and their families and the most effective service responses available to them.

Options for the Future:

  • Carers Associations and young carer advocates could apply for funding for the 'Innovative and Collaborative Pilot Projects' which are set to begin in 2002 and aim to achieve integrated community support for young people in transition (this program is also mentioned in the education, training and employment section).
  • The Commonwealth Government has announced $4.8million will be provided from 2002-2003 to expand assistance to young people in their transition from education to employment through the development of the 'Mentor Marketplace'. This is expected to be a flexible program and FaCS are currently exploring where the needs lie and the most effective and efficient ways to make use of their funding. Carers Associations and young carer advocates may wish to keep in mind that FaCS will be looking for ideas to expand mentoring programs and they could begin formulating ideas around possible partnerships and models.
  • Young carer advocates could encourage local government (which has a history of providing quality youth and community care services in many areas) to be actively involved in resourcing young carer networks within their local communities.
  • Government could be lobbied to consider the provision of funding for pilot programs that allow for action research and the development of best practice policies and programs.
  • Possibility of establishing a National Clearinghouse under the auspice of Carers Australia (in collaboration with one or more other key stakeholders) for information on young carers and their families and innovative service models and programs.
  • Consideration given to the formulation and development of national best practice models and standards for programs which assist children and young people with care responsibilities and their families.

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6.2 Specification of children and young people with caring responsibilities and their families as key client target groups of relevant mainstream services

Key research findings:

  • Young carers are currently not listed as a specific target group in any mainstream services.
  • Most young carers are not accessing mainstream services and if they do so, are unlikely to be identified and to have their unique needs met.
  • Some current services and programs that could greatly assist young carers are directed towards 'at risk' young people or families. Even though statistics show that young primary carers are an 'at risk' group and that their families can face many extra challenges due to the caring role, they are not identified as an 'at risk' group and have therefore been excluded from these programs.

This outcome can be achieved by:

Mainstream services, with the support of their funding bodies identifying young carers as a unique 'at risk' or 'high need' group in need of targeted approaches and tailored responses within their existing programs.

Related Goals:

  • Increase the number of young carers and their families accessing and receiving appropriate support from mainstream services.
  • Increase the level of early identification of children and young people who have caring responsibilities and their families by workers within key mainstream services.
  • Reduce the alienation and exclusion often experienced by children and young people with caring responsibilities and their families in relation to mainstream services.

Options for the Future:

  • As mentioned above consideration needs to be given to young carers being specified as key client target groups in programs already targeted to young people 'at risk' such as Jobs Placement, Education and Training (JPET).
  • Young carer advocates need to educate youth and family services, other mainstream services and services whose client groups include carers about the needs of young carers and their families in order to promote effective support and assistance. For example, HACC services should be targeting support to all carers, including young carers.
  • Provision of resources or better use of existing resources needs to occur in mainstream services, so that their promotional and information materials are presented in a way that encourages children and young people with caring responsibilities and their families to access services.
  • Kids Help-line, Care Help-lines and similar telephone support and health information services could target children and young people with caring responsibilities, so that young carers can readily access vital support from their home.

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6.3 Effective responses from key professionals to children or young people with caring responsibilities and to their families

Key research findings:

  • Young carers are a potentially easy group to identify in key sectors such as health, community care, welfare and education, but at present seem to be largely ignored by the professionals within them.
  • Currently most professionals in these sectors are unaware that young carers exist, or if they are aware of them, do not understand the issues they face or their unique needs and how to respond effectively.
  • Key professionals have been identified as being teachers and school welfare staff, doctors, nurses, Home and Community Care staff, social workers, youth workers, child protection workers and Centrelink staff.

This outcome can be achieved by:

  • Developing best practice guidelines and policies for working with young carers and their families that can be applied across all the relevant sectors; and
  • Educating key professionals from these sectors on the needs and issues of children and young people with caring responsibilities and their families and how to effectively respond.

Related Goals:

  • Increase the level of early identification of children and young people with caring responsibilities.
  • Increase the number of young carers who are acknowledged in their role and receive appropriate responses to their own needs and the needs of their family.
  • Raise the awareness and capacity of professionals to deal appropriately with issues concerning children and young people with caring responsibilities and their families.

Options for the Future:

  • Consideration of the establishment of a well resourced national stakeholder group to develop national best practice guidelines for working with young carers and their families and ensure these guidelines are integrated with existing relevant national guidelines and related initiatives, such as in mental health below.
  • Children and young people with caring responsibilities be considered in any developments evolving from the recent initiative announced by the Commonwealth Department of Health and Aged Care which aims to produce good practice guidelines and resource materials for service providers who work with 'children with parents affected by mental illness'.
  • Development of training programs for key professionals on the issues and needs of children and young people who have caring responsibilities and their families. Ideally young carers would have direct involvement in this training.
  • Development of identification tools to assist professionals in all relevant sectors to make early identification of children or young people with caring responsibilities. These tools could include appropriate questions relating to children and their potential caring role by key organisations in their: assessment forms, admission and discharge plans, care plans or case management meetings for ill or disabled people.

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6.4 Adequate income support for young carers and their families

Key research findings:

  • Young carers often rely on their families for financial support. Their families often depend on social security payments that are not adequate to cover the widely recognised and documented extra additional costs of care, disability or illness. This situation prevents or reduces work opportunities and the earning of additional income.
  • The legislation governing Carer Payment restricts people who are involved in education or employment activities for more than 20 hours a week from receiving the Payment. This excludes young people who are still at school from receiving the income support and may provide incentives for young carers to leave school early.
  • Young carers and their families are at high risk of becoming locked into a cycle of poverty and dependence on social security.

This outcome can be achieved by:

Undertaking a comprehensive review of:

  • the adequacy of financial support measures currently available to young primary carers and their families; and
  • appropriate options for the provision of financial support to families where children and young people have primary care responsibilities.

Related Goals:

  • Ensure families with children and young people in primary care roles are not financially worse-off than their counterparts who have adult carers.
  • Ensure young carers and their families have an adequate income and do not live in poverty.

Options for the Future:

Before real options can be developed and formulated an investigation needs to take place into:

  • the level of income young carers and their families require to meet their everyday living costs;
  • what financial support measures are currently being provided to young carers and their families; and
  • what changes to the current financial support measures may need to be considered.

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6.5 Participation of children and young people with caring responsibilities in education, training and employment at rates approaching those of their peers who do not have caring responsibilities

Key research findings:

  • Young carers are at high risk of leaving school early and the majority struggle with many aspects of education or employment due to their caring role.
  • ABS Statistics from 1998 show that approximately 60% of young primary carers in Australia between the ages of 15-25 were unemployed or not in the labour force (compared to 38% for the general population in this age group)and only 4% of young primary carers aged 15-25 years were still at school (compared to 23% of the general population in this age group).
  • Young carers are early school leavers by circumstance, not by choice. Therefore they are likely to respond to policies and programs that aim to facilitate their inclusion in school and pathways to alternate education, training or employment, so long as they are presented and promoted appropriately.

This outcome can be achieved by:

  • Identifying young carers as an 'at risk' group requiring priority in Commonwealth and State education, training and employment policies and programs; and
  • Increasing the ability of education, training and employment bodies to identify young carers and provide accessible flexible options to participate in education, training and employment activities.

Related Goals:

  • Ensure children and young people with caring responsibilities have the same access to opportunity in education, training and employment as their peers.
  • Increase participation rates of young carers in education, training and employment.
  • Decrease the number of young carers who feel it is necessary to leave school early due to their caring role.

Options for the Future:

  • Provide training and other measures that improve the capacity of schools to identify young carers and their needs.
  • Young carer advocates facilitate and encourage schools to increase their links with community agencies that can assist in supporting young carers.
  • Provision of outreach education models for young carers to access. Partnership outreach education models will be trialed in 2002-2003 in response to recommendations provided under the recent Prime Minister's Youth Pathways Action Plan Taskforce. Young carer advocates should try to ensure these models meet the needs of young carers and will be accessible to them.
  • Promote flexible timetabling for young carers. One option is the promotion of completing the HSC, or its equivalent, over three years instead of two.
  • Young carer advocates ensure mechanisms are available for young carers to access educational sponsorships or scholarships. This can include the possibility of working in partnership with The Smith Family to ensure managers and workers for the 'Learning For Life' program are aware of young carers' unique vulnerabilities and needs.
  • Carers Associations to examine the possibility of working in partnership with government, community organisations and businesses to facilitate the provision of computers and Internet access at low cost for young carers and their families and to subsidise access to Internet cafes where available.
  • Development of homework assistance schemes that meet young carers' unique needs such as, finding alternate care for the person they are supporting. Homework assistance programs could be built into specific young carer programs and Carer Respite Centres.
  • Explore the possibility of providing options for young carers to gain credits or accreditation for out of school learning and the many skills they learn and develop at home. The Commonwealth Department of Education, Training and Youth Affairs (DETYA) and the Australian National Training Authority (ANTA) is currently exploring this issue for young people who participate in Youth Development Programs.
  • Carers Associations and other young carer advocacy groups could take up the option of tendering, possibly in partnership with community groups, for one of the 18 new innovative pilot programs that aim to achieve integrated community support for young people in transition. These programs are likely to commence in 2002.
  • Provide career counselling and transition supports that can respond to the unique needs of young carers. This could include Carers Associations and young carer advocacy groups promoting young carers as a key client target group for these programs and developing partnerships with other key stakeholders to auspice key initiatives such as the new career and transition adviser pilot programs that have been announced by the Commonwealth as commencing from 2002.
  • Young carer advocates need to be aware of the recently established Ministerial Council on Education, Employment, Training and Youth Affairs (MCEETYA) Taskforce, "Transition from School". If appropriate, after Terms of Reference for this taskforce have been ratified, young carers could be included in the consideration of possible options for support and participation in education, training and employment.
  • Carers Associations can endeavour to work towards young carers being recognised as an 'at risk' group by key government departments responding to the report completed by the Prime Minister's Youth Pathways Action Plan Taskforce. Options for the future identified in this report are similar to many of the recommendations listed in the Taskforce's Report.
  • Consider the development of options that enable young people with caring responsibilities to access all forms of post secondary education.
  • Examine the capacity for providers of programs such as Jobs Placement, Employment and Training (JPET), Jobs Pathway Program (JPP), Youth Intensive Assistance and Return to Work (or the new Transition to Work Program) to enable access by young carers and increase provision of support to them by specifying young carers as a key client target group.
  • Research the number of young carers accessing Job Network providers and in particular, specialised youth or carer employment assistance programs. Use this data to develop strategies and resources that could facilitate identification of young carers and examine their access to appropriate support.
  • Government at all levels and private business could implement policies and incentives that promote more flexible employment, training and work experience programs.

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6.6 Regular opportunities for social participation for children and young people with caring responsibilities and for their families

Key research findings:

Most young carers and their families have a limited number of friends and are often socially isolated with low rates of social participation in their communities. Contributing factors to this situation are the responsibilities and time demands of the caring role and other common access difficulties such as lack of respite care, transport and finances and inappropriate facilities for the ill or disabled family member.

This outcome can be achieved by:

Increasing the capacity of community groups and community facilities to provide regular social activities that are appropriate for and accessible to young carers and their families.

Related Goals:

  • Increase the opportunities available for young carers and their families for regular access to recreational, sporting, cultural, arts or leisure activities in their own communities.
  • Increase the informal support networks available to young carers and their families.
  • Reduce the level of exclusion and marginalisation that young carers and their families currently experience in their own communities.

Options for the Future:

  • Promotion and provision of flexible respite care arrangements that meet the needs of children and young people and their families and that actively encourage their social participation.
  • Local government and communities could work together to find local solutions that address the lack of transport available to young carers and their families.
  • Young carer specific programs, 'condition specific' organisations and disability programs could examine the possibility of providing recreational activities for young carers and the person to whom they provide care and support.
  • Establishing young carer advocates within Carers Associations to liaise with community organisations, including sporting and recreational groups, to encourage them to address access and equity issues and promote more opportunities for young carers and their families to have access to social participation.
  • Young carer advocates within Carers Associations consider the possibility of working with groups such as Ausyouth (recently created by DETYA to provide national coordination and facilitation of youth development programs) to examine available options to increase the limited access young carers currently have to social activities.

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6.7 Commitment to a whole-of-government approach to address the key issues for children and young people with caring responsibilities and for their families

Key research findings:

  • No single agency or government department has responsibility for addressing the key issues for children and young people with caring responsibilities and their families which are relevant to a number of Commonwealth portfolios.
  • A whole-of-government approach has been implemented successfully by the government in the past on issues such as, youth homelessness and youth suicide.

This outcome can be achieved by:

The development and implementation of cohesive policies and programs across all relevant Commonwealth portfolios and co-ordination between Commonwealth, State and Local Government and the non-government sector.

Related Goals:

  • Formulate a national policy framework for children and young people with caring responsibilities and their families in consultation with national and state Carers Associations, young carer advocacy groups and other key stakeholders.
  • Develop national policies and programs consistent with the priorities identified in the national policy framework in consultation with key stakeholders and ensure they are effectively implemented, reviewed and progressed across all relevant Commonwealth departments and funded programs.
  • Develop and implement communication strategies to inform the Australian community about Commonwealth policies and programs relevant to children and young people with caring responsibilities and their families and to promote access to them.

Options for the Future:

  • All relevant departments to become more aware of young carer issues and work towards the development of cohesive policies that cross portfolios.
  • Carers Australia could develop a national policy on children and young people with caring responsibilities and their families as a basis for working with other Carers Associations, Government and other key stakeholders to address the key issues for children and young people with caring responsibilities and their families.
  • Ministerial Council on Employment, Education, Training and Youth Affairs' (MCEETYA's) recently established Ministerial Sub-Committee 'to develop practical options for strengthening transition pathways for young people disconnected or at risk of becoming disconnected', be provided with relevant information so that they can consider the inclusion of young carers as an 'at risk' group.
  • Consider options for other appropriate Ministerial Councils, such as the Health and Community Services Ministerial Council (HCSMC) to give priority to addressing the key issues of young carers.

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6.8 Priority research status for children and young people with caring responsibilities and their families to generate sound qualitative and quantitative research information

Key research findings:

  • There is a scarcity of data on young carers and the data available is not broken down into the most useful age groups for the purposes of this project, that is 5-11, 12-17,18-25yrs.
  • There are very few research papers available on the Australian experience of young carers.
  • UK research information could not be balanced by research from Australia and other countries.

This outcome can be achieved by:

National research bodies acting to include the issues of children and young people with caring responsibilities and their families in their future research and in particular focusing on areas such as:

  • Mental and physical health effects of 'young caring'
  • The 'care journey': more detailed effects of caring in the short, medium and long term and the potential protective indicators involved in reducing negative effects
  • Poverty and debt issues
  • Young carers experiences of the current service system, in particular, child protection agencies, mental health systems, schools and pathways to employment
  • Appropriate and best practice models of policy and service delivery for young carers.

And focusing on particular sub-groups of carers including:

  • Aboriginal and Torres Strait Islanders
  • People living in rural and remote regions of Australia
  • Culturally and linguistically diverse peoples
  • Children under 11 years of age
  • Those caring for someone with a substance abuse issue
  • People under 26 years of age caring for a partner or their own child
  • Children and young people who have multiple caring responsibilities, for example carer for a parent and siblings.

Related Goals:

  • Build a body of knowledge in Australia about children and young people with caring responsibilities and their families.
  • Obtain sound data on the needs of young carers of different ages, developmental stages and cultural backgrounds in Australia and their key issues.
  • Give public recognition to the experience of a broad 'at risk' group of young Australians and their families.
  • Develop more appropriate policy and service responses to young carers and their families in the future.

Options for the Future:

  • Carers Associations and young carer advocates could auspice government funded research in existing and new young carer programs.
  • Carers Australia to continue to participate in ABS reference committees to advocate relevant and more comprehensive data collected in the Disability, Ageing and Carers Survey on children and young people who are carers.
  • Carers Australia to advocate that the Commonwealth Department of Health and Aged Care ensure data on children and young people who are carers is gathered under the new minimum data set that is to be implemented in 2002 for Carer Respite Centres (funded under the National Respite for Carers Program). This data could then be used by the Commonwealth Department of Health and Aged Care to inform future research, policy and program development and service provision.
  • Advocate for minimum data sets to be available for services and programs funded at the Commonwealth and State level to include ages of carers, so that details on the numbers of young carers accessing such programs may be available.
  • Carers Associations advocating for young carers issues, needs and experiences can be consulted about research that will determine factors critical to developmental health and wellbeing of children in Australia. This can be done by Carers Associations advocating for young carers or becoming actively involved in research projects that may be undertaken by the newly established National Partnership for Development, Health and Wellbeing.
  • Carers Associations could approach key people within relevant Commonwealth, State and Territory Government Departments (including staff from DETYA and FaCS who have been involved as stakeholders in this research project) with briefs outlining research projects for consideration for the next round of research to be undertaken by the National Youth Affairs Research Scheme.

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6.9 Improved understanding of the needs of children and young people with caring responsibilities within their own families

Key research findings:

  • Families are often unaware of the negative impact the caring role can have on children and young people.
  • Families are often fearful about identifying a young carer in their family and evoking responses they perceive to be inappropriate and unhelpful.
  • Informal support from family members was identified by young carers in the Focus Group Study as being one of their main sources of support; however, all of the participants felt that with increased trust and understanding between the parties this support could be improved.

This outcome can be achieved by:

The development and sensitive application of a range of education and communication strategies for families where disability and chronic illness is apparent.

Related Goals:

  • Enhance the capacity of family members to provide effective support for children and young people with caring responsibilities.
  • Increase early self-identification by young carers and their families.
  • Increase the utilisation of the range of available appropriate programs and services by families of children and young people with caring responsibilities
  • Increase the participation of families of children and young people with caring responsibilities in available young carer programs.

Options for the Future:

  • Possibility of producing materials that are easy to read and that sensitively outline young carer's issues, needs and strategies to help them. These could be supplied to families where disability or illness is apparent when they contact mainstream or specialist organisations.
  • Young carer support programs, 'condition specific' support organisations and other disability programs could encourage and facilitate whole-of-family group activities, so that all family members can participate in activities together in a supportive environment and learn about each other's needs and how they can be met.
  • Promoting the inclusion of all family members in any service or program delivery by young carer programs, 'condition specific' organisations and other disability programs when working with families in which children or young people have caring responsibilities.

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6.10 Increased community awareness of the needs of children and young people with caring responsibilities and of their families

Key research findings:

Young carers are rarely identified in the community and do not feel comfortable about identifying themselves. This is one of the key contributing factors to many young carers remaining isolated, without important supports to participate in their community and reach their full potential.

This outcome can be achieved by:

Developing and implementing a range of education and communication strategies that present positive images of children and young people with caring responsibilities and that address the diversity of young carer ages, needs and issues. These strategies should also address the issues of disability and illness within families and the community.

Related Goals:

  • Create more supportive environments, which will increase the level of self-identification among children and young people with caring responsibilities and their families.
  • Increase the early identification of young carers and their families in their communities.
  • Decrease the level of marginalisation experienced by children and young people with caring responsibilities and their families within their own communities.

Options for the Future:

  • Carers Associations could become more active in advocating for young carers' rights and needs and promoting more supportive policies, programs and environments. One obvious way this can be achieved is by young carers having an integral role in 'Carers Week' and being featured in the program of activities.
  • 'Condition specific' organisations such as, mental health organisations, Cancer Councils and the MS Society could consider incorporating young carers into their various awareness raising efforts and special days.
  • Youth Week could be used more effectively as a week for promoting young carer issues.
  • Examine using the media to provide positive images and stories of young carers and advocating for young carer characters to be included in TV feature programs.
  • Facilitating more opportunities for young carers to voice their own needs in mainstream forums, especially youth forums and summits and on youth advisory committees.
  • The possibility of developing and promoting a national logo or symbol specifically for young carers.

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Appendices & References 

Appendices

Appendix 1: ABS Definition of 'Carer' and 'Primary Carer'

Carer

A person of any age who provides any informal assistance, in terms of help or supervision, to persons with disabilities or long-term conditions, or persons who are elderly (i.e. aged 60 years or over). The assistance has to be ongoing, or likely to be ongoing, for at least six months. Assistance to the person in a different household relates to 'everyday types of activities', without specific information on the activities. Where the care recipient lives in the same household, the assistance is for one or more of the following activities:

  • communication;
  • health care;
  • housework;
  • meal preparation;
  • mobility;
  • paperwork;
  • property maintenance;
  • self care;
  • transport.
Primary carer

A primary carer is a person of any age who provides the most informal assistance, in terms of help or supervision, to a person with one or more disabilities. The assistance has to be ongoing, or likely to be ongoing, for at least six months and be provided for one or more of the core activities (communication, mobility and self care).

Sourced from: Australian Bureau of Statistics, April 1999 '1998 Disability, Ageing and Carers: Summary of Findings Cat. no. 4430.0'

References

  • Australian Bureau of Statistics (1999) 'Special Article – Aboriginal and Torres Strait Islander Australians: A statistical profile from the 1996 Census'; in Year Book Australia: Cat. no. 1301.01
  • Australian Bureau of Statistics (April 1999) 1998 Disability, Ageing and Carers: Summary of Findings Cat. no. 4430.0
  • Aldridge, J & Becker, S (1998) The National Handbook of Young Carers Projects, Carers National Association and Young Carers Research Group, London.
  • Commonwealth Department of Education, Training and Youth Affairs (2001) National Evaluation Report – Full Service Schools Program 1999 and 2000, Commonwealth Department of Education, Training and Youth Affairs, Canberra.
  • Commonwealth Department of Health and Aged Care (2000) LIFE, A Framework for Prevention of Suicide and Self-Harm in Australia: Building Partnerships, Mental Health and Special Programs Branch, Commonwealth Department of Health and Aged Care.
  • Commonwealth Department of Health and Aged Care (2000) National Action Plan for Promotion, Prevention and Early Intervention for Mental Health, Mental Health and Special Projects Branch, Commonwealth Department of Health and Aged Care, Canberra.
  • Commonwealth Department of Health and Aged Care (2000) Promotion, Prevention and Early Intervention for Mental Health – A Monograph, Mental Health and Special Projects Branch, Commonwealth Department of Health and Aged Care, Canberra.
  • Council to Homeless Persons (1998) Fact Sheet 2: Youth Homelessness, Council to Homeless Persons, Melbourne.
  • Dearden, C. & Becker, S. (1998) Young Carers in the UK: A Profile: Carers National Association, London.
  • Gilding, N., Director, Ausyouth (2001) 'Advancing Youth Development', Second National Youth Development Conference, Our Future Now – Empowering Young People Through Youth Development, 22-23 March 2001, Glenelg, South Australia.
  • Hon Trish Worth MP., Parliamentary Secretary to the Minister for Education, Training and Youth Affairs (2001) 'Advancement of Youth Development within Australia', Second National Youth Development Conference, Our Future Now – Empowering Young People through Youth Development, 22-23 March 2001, Glenelg, South Australia.
  • McClelland, A., MacDonald, F. & MacDonald, H (1998) 'Young People and Labour Market Disadvantage: The Situation of Young People not in Education or Full-Time Work'; in Dusseldorp Skills Forum & Australian Council for Educational Research (eds.), Australia's Youth: Reality and Risk, Dusseldorp Skills Forum, Sydney.
  • McClelland, A. & MacDonald, F (1999) 'Young Adults & Labour Market Disadvantage'; in Dusseldorp Skills Forum (ed.), Australia's Young Adults: The Deepening Divide, Dusseldorp Skills Forum, Sydney.
  • McKay, R., Executive Director, Family Capabilities, Commonwealth Department of Family and Community Services (2001) 'Youth in the Family', Second National Youth Development Conference, Our Future Now – Empowering Young People Through Youth Development, 22-23 March 2001, Glenelg, South Australia.
  • Prime Minister's Youth Pathways Action Taskforce (2001) Footprints to the Future, AusInfo, Canberra.
  • Reference Group on Welfare Reform (July 2000) Participation Support for a More Equitable Society, AGPS, Canberra.
  • The Hon. Dr David Kemp, Minister for Education, Training and Youth Affairs & Senator Amanda Vandstone, Minister for Family and Community Services (22 May 2001) Joint Media Release: 'A National Commitment to Young People: The Report of the Prime Minister's Youth Pathways Action Plan Taskforce Footprints to the Future'.
  • Waters, C., First Assistance Secretary, Training and Youth Division, Department of Education, Training and Youth Affairs (2001) 'The advancement of youth development – investments, challenges and change', Second National Youth Development Conference, Our Future Now – Empowering Young People Through Youth Development, 22-23 March 2001, Glenelg, South Australia.
  • Young Carers Festival, (2000) Voice: Review of the first Young Carers Festival 2000, UK.

www.together.gov.au (site no longer active)

Curriculum Corporation

Note: For references used to gain findings and inform the key issues in this report please see References and Appendices in Background Paper for the Young Carers Research Project, available from Carers Australia

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