ACWA Conference 2008 18-20 August 2008 Sydney

1. ACWA Conference 2008 18-20 August 2008 Sydney Title:Children and young people as active agents in care-giving - the case of young carers Co-authors: Bettina Cass, Trish Hill, Ciara Smyth, Megan Blaxland Social Policy Research Centre University of NSW Based on research funded by FaHCSIA. The findings are preliminary and the research is being finalised. The views expressed in this presentation are those of the authors, andnot those of FaHCSIA or the Australian Government.

2. Introduction: Young Carers as Active Agents • ‘Young carers’ in Australia refers to children and young people aged up to 24 years who have caring responsibilities for family members who have a chronic illness or disability. • The literature on care-giving usually emphasizes ‘stress’ and ‘burden’, and fails to capture the complexity and worth of the diverse experiences of care in which children and young people are involved. • This presentation places young people’s care-giving in a framework which sees them as active agents within their families and communities. • Agency operates within constraints: familial and kinship obligations; socio-economic and demographic constraints including low-income and lack of resources; and policy and service constraints. • This presentation explores the socio-economic-demographic circumstances and experiences of young carers to identify the costs and benefits of their caring and policy issues highlighted by the research.

3. Background to the Project Cass, B C. Smyth, T. Hill and M. Blaxland, (2008) More people should know what good jobs carers do! The costs and benefits of care: considering the case of young carers’, Unpublished report to FaHCSIA, SPRC UNSW • Stage 1: Review of literature on young carers’ experiences, circumstances and the impacts of their caregiving - Australia, the UK and North America • Stage 2: analysis of existing national data sets: ABS Survey of Disability, Ageing and Carers 2003 and the Census of Population and Housing2006, Wave 5 of the Household Income and Labour Dynamics in Australia (HILDA) survey (2005). • Stage 3: 11 Focus groups with 68 young carers aged 11-24 yrs in NSW, South Australia and the ACT. • Stage 4: Focus groups & interviews with policymakers and service providers • This paper draws on: theoretical framework from literature review, analyses from Census 2006, SDAC 2003, HILDA wave 5.0, findings from focus groups with young carers and with policymakers and service providers.

4. Defining and identifying Young Carers • Young carer’ term used in Australia and the UK (‘young caregiver’ in the USA) to refer to children and young people, in the UK up to the age of 17, in Australia up to the age of 24, in the USA up to the age of 18. • Definition of young carers: children and teenagers up to age 17 and young adults aged 18-24 who provide “any informal assistance, in terms of help or supervision, to persons with disabilities or long-term conditions, or older people (aged 60 and over)”. Assistance has to be ongoing, or likely to be ongoing, for at least six months. Definition from SDAC 2003 (ABS, 2004). • Goes beyond what adults would normally expect of children and what most children would expect routinely to do. • Theoretical frameworks on care-giving rarely consider the case of young carers. Children and young people are not expected to bear substantial caring responsibilities.The image of children and young people as unpaid carers transgresses norms that envisage them as care recipients, as dependent.

5. Agency within Constraints • framework: young carers as active agents engaged in reciprocal relationships of care, contributing to family integrity and well-being: mobilising scarce resources of informal care often in financially disadvantaged circumstances. • Agency operates within constraints. • Familial and kinship obligations in which care is embedded; • Socio-economic and demographic circumstances – households likely to be characterised by low-income, lack of resources, cultural difference (migrant status, CALD background, Indigeneity); • Policy constraints: the policy and services settings in which young people may or may not be be recognised/recognise themselves as having a carer identity; -involving questions of access, age-appropriateness, cultural appropriateness and affordability of services.

6. Conceptual Framework: Social Care Extending Daly and Lewis’ typology of “social Care” • Care is labour,is care is paid or unpaid, formal or informal: what are the social policy determination of these porous boundaries? • Care is embedded within a normative framework of obligation and responsibility, making it inappropriate to consider the labour aspects of care alone. For young carers in particular, the bonds of intra-familial love and reciprocity between caregiver and care recipient may hide and even isolate young carers and reduce their referral to and usage of supports and services. These are the circumstances in which young people providing care may not recognise or identify with the category-’young carer’. • Care is an activity which incurs costs - direct costs: additional expenditure and costs to physical and mental health; and opportunity costs: possible disruption to education, training, labour force participation, income earning and participation in social/friendship networks.

7. Carer Status of Young Carers by Age and Gender Source: ABS SDAC (2004) All Persons, Living in Households, Carer Status by Age Notes: Primary carers only include persons aged 15 years and over for whom a personal interview was conducted. Persons aged 15-17 were only interviewed if parental permission was granted. Percentages do not all sum to 100 because of rounding.

8. Proportion of all young people who are carers by age and state. Census 2006 Source: ABS Census Tables 2006 Catalogue Number 2068.0 Notes: (a) The ‘Unpaid Assistance to a Person with a Disability’ variable records people who, in the two week prior to Census Night, spent time providing unpaid care, help or assistance to family members, or others because of a disability, a long-term illness, or problems related to old age.

9. Proportion of young Indigenous persons who are carers by age and state. Census 2006.

10. Carers and family composition Source: ABS SDAC 2003. Weighted percentages.

11. Socio-demographic family and caring circumstances • Majority of young carers – 61% - caring for a parent; For primary carers: 58% caring for a parent; 22% caring for their own partner • Gendered dimension of caregiving – about half of all young carers and primary carers aged up to 17 years are female; but young women aged 18 to 24 comprise 81% of primary carers. Gendered caring norms and practices: societal expectations placed on young women to adopt caring roles • In every State and Territory, caring more prevalent among Indigenous children and young people (Census 2006) • Young carers less likely than non-carers to live in a couple family and more likely to live in a sole parent family – indication of financial disadvantage and lack of other adult carers • young primary carers twice as likely as non-carers to be bornoverseas in a non-English speaking country. • More than half of all young carers cared for a person with a profound or severe disability.

12. What types of care do young people provide? • Based on Analysis of SDAC 2003: The most common condition of the first recipient of care for young carers was chronic or recurring pain or discomfort (27 per cent) or restriction in physical activities and work (22 per cent), followed by slow at learning or understanding (11 per cent). • Only 3 per cent of young carers were caring for a person with mental illness. The question about disability type was asked of care recipients, which may lead to under-reporting of mental illness. • In contrast, A survey of young carers in the UK being supported by specialist services showed that 29 per cent were caring for a person with mental health problems. The samples however are different: the SDAC is a random sample and the UK sample is purposive, sampling young carers in touch with services.

13. Employment rates by gender and carer status Source: ABS SDAC 2003. Weighted percentages and numbers. Carers include all primary carers and carers. Note: Not all percentages sum to 100 due to rounding.

14. Household income distribution by Carer Status: young people aged 15-24 (SDAC 2003)

15. Employment and income correlates of care-giving • Constraints on employment participation for carers aged 15-24: For male young carers compared with non-carers: lower percentage in F/T employment, significantly higher percentage in P/T employment, and slightly higher percentage unemployed • For female young carers compared with non-carers: lower percentage in F/T employment, slightly higher percentage in P/T employment, and significantly higher percentage unemployed • Multivariate analysis of young-carers’ employment (sample size 4693) - Controlling for age, education qualifications, CALD status and whether the young person has a disability Key result: Primary carers less likely to be employed than non-carers (marginal effect: -19 percentage points) • Carers somewhat less likely than non-carers to have wages as main income source; more likely to rely on income support • Household income: approx. 40% of young carers are in households in the two lowest income quintiles compared with about 25% of young people who are not carers: financial vulnerability of care-giving and of family illness or disability

16. Emotional Obligations and Mental health • 76 per cent of young primary carers stated that they took up their roles because they could provide better care than someone else, or that it was the responsibility of a family member to provide care, or because of emotional obligation. (SDAC 2003) • The number of emotional, relationship and financial burdens experienced by the young primary carers was summed to identify the extent of hardship experienced. Approx. 50 per cent reported between 1 and 4 negative effects; nearly 30 per cent reported 5 or more negative effects of caring; around 20 per cent did not report any negative consequences of caring. (SDAC 2003) • The HILDA survey (wave 5.0) includes the SF-36 in the self-completion questionnaire. The SF-36 is a health-related quality of life instrument encompassing 36 questions on aspects of self-reported physical and mental health. Under certain conditions, a Physical Health Component Score (PCS) and Mental Health Component Score (MCS)can be constructed. • While all groups of young people reported similar scores on self-reported physical health, young carers had significantly lower scores on self-reported mental health scales, indicating that care has emotional and mental health costs.

17. Composition of Focus groups with Young carers • Focus groups with young carers aged 11-17 years and 18–24 years in NSW, SA and the ACT: 11 focus groups involving 68 participants • Participants recruited through Carers NSW and Carers SA. Focus groups held at their Young Carers and Young Adult Carers Camps . • Critical observation: participants identified (by themselves, their families and service providers) as ‘young carers’. Researchers have not been in contact with young people who are not identifiedwithin this category. Issue for further research. • Focus groups explored young carers’ experiences; dimensions of care-giving and level of responsibility; how they “found out” that they were young carers; education, training and employment; family composition and parental employment status; circumstances and needs of the person cared for; access to recreational, sporting, and other social activities; usage/non-usage of formal services. .

18. Range of activities undertaken by young carers

19. Identifying as a young Carer • Young caregiving is constituted by a diverse set of circumstances, affected by age; relationship to care recipient; intensity of caregiving responsibilities; length of time providing care; level of available support from family members and friends. • Very few participants had recognised themselves to be young carers prior to coming into contact wih carer supports and services • Saw themselves as a family member “helping out”, doing what is expected of family mebers, in circumstances which require them to take on far more responsibilities than friends and peers • Finding out about being part of a recognised category –identifying as “a young carer” was described as a “revelation”, a source of self-understanding and recogniton • Benefits of identifying as a carer: join networks of other young carers, gain referral and access to supportive service, especially respite care; gain better recognition of their circumstances in the education system; gain better understanding by authorities of their family’s restricted income circumstances.

20. Focus Groups: Some key findings • Rich sources of evidence and understanding • Young carers show commitment, generosity and understanding well beyond what might be expected at their ages, well beyond community perceptions of young people’s expected contributions to family life. • Formal services received and appreciated and which they would like to see more widely available: • adequate and appropriate forms of financial support given the costs of ill health and disability and the constraints imposed on their parents’ and their own employment; • assistance with domestic activities and transport; • respite care for longer hours for their care recipient to benefit both the cared for person and the young carers themselves so that they can complete their education with less strain; participate in employment with less strain; participate more fully in friendship and social activities.

21. Focus Groups with policymakers and service providers • Young people rarely regarded themselves as carers; rarely contacted services for support • Service providers stated that the number of hidden young carers is substantially greater than the number in contact with service organisations • ‘Carer’ is seen by young people as age-based: what is done by people in much older cohorts, not by young people • Young people in Indigenous families and in CALD family less likely to identify themselves or be identified by family members as a “carer”: immersion in the normative expectations of family responsibilities • Young people’s fear of the reactions of school teachers and peers: stigma and shame associated with disability and mental illness and stigma also pervading care-giving in these circumstances • Parents’ fear of child protection authorities: young people providing care transgress expectations of parental care • Maintain privacy, family integrity – do not bring official andcommunity scrutiny into family circumstances

22. Finding hidden young carers • Most important of all: whole of school approaches to identify young carers in the education system • Whole of health care system approaches to identify young carers whose care recipients are receiving health care services • Encourage use of support services; in particular respite care to assist with schooling participation, retention and achievement; respite care to maintain friendships and social/sporting activities • Develop networks with other organisations and agencies to encourage referrals

23. Factors that militate against young carers’ usage of formal support services • focus groups indicate that many young people chose not to use formal services for a variety of reasons: • the belief that they are best placed to care for their care recipient; • protection of the dignity of the family member for whom they care; • protection of family privacy and integrity; • lack of knowledge of available services; • dissatisfaction with prior service use; • unavailability of appropriate support. • Not identifying oneself as a carer and therefore not seeking support • Corroborates analysis from SDAC 2003: asked why they undertook their caring role, 76 per cent of young primary carers stated that they took up their roles because they could provide better care than someone else, or it was the responsibility of a family member to provide care, or because of emotional obligation. (SDAC 2003)

24. Observations drawn from the study • Care is labour: occupies time which would otherwise be available for participation in education, training, employment and social/friendship activities • Care is located in a normative framework: young people may not identify themselves as carers but as family members carrying out their responsibilities and obligations. Young people undertaking informal care are attempting to harness scarce resources, substituting a normative economy of care for recourse to paid, formal care, which they and/or their family consider either inappropriate, not affordable or inaccessible. Identifying as a carer, contact with carers associations, school teaching staff and counsellors may lead to referral to appropriate services -access to services which may assist both them and their care recipient. • Caring incurs costs to education, employment, income and mental health: young carers more likely than peers to be in low income households, affecting access to services and supports. Over-representation of young people of CALD and Indigenous backgrounds among identified carers and the likelihood that they are also over-represented among hidden young carers indicate that the costs of care may be disproportionately borne.

25. Concluding comments • benefits as well as costs: profound contributions to well-being of care receiver and whole family; to family integrity and dignity of care recipient; acquisition of skills, sense of maturity, independence and achievement. • What is required is a much deeper understanding of the ways in which children and young people attempt to protect the dignity and integrity of their care recipients and protect family well-being. • It is on the base of this understanding that a more genuine sharing of the costs of care by formal care services and supports might be constructed. • Developing Australia’s social care infrastructure of appropriate, affordable and accessible services must include an understanding of the needs of young people who care and the people with a disability or long-term illness for whom they care. Identifying and supporting hidden young carers is one of the key pathways into developing this policy infrastructure.