Bettina Cass, Deb Brennan, Cathy Thomson, Trish Hill,

Experiences of young carers and young adult carers: life-course stage dimensions of care-giving and the implications for policy and practice Bettina Cass, Deb Brennan, Cathy Thomson, Trish Hill, Christiane Purcal, Elizabeth Adamson and Myra Hamilton Social Policy Research Centre, University of NSW Carers NSW 2011 Biennial Conference 17-18 March 2011

Background to the study • Findings based on a 3 year Australian Research Council (ARC) Linkage Grant on Young Carers:Social policy impacts of the caring responsibilities of children and young adults • The researchers acknowledge the funding from the ARC and the support from the Project Partners. • Partner organisations: In NSW: Carers NSW, NSW Health, Ageing, Disability and Home Care in Dept of Human Services, & NSW Commission for Children and Young People In South Australia: Carers SA, Social Inclusion Unit in the Department of Premier and Cabinet, Dept of Families and Communities, Dept of Education and Children’s Services, Dept of Further Education, Employment, Science and Technology, &Children, Youth and Women’s Health Service

Introduction: highlighting the salience of age • In this presentation we distinguish between young carers (up to age 17) and young adult carers (18-25) who provide care for a family member with disability, long term illness or who are frail older people • Growing recognition of young carers and young adult carers as a social category in last two decades in Australia, UK and increasingly in the US, Canada, New Zealand and Ireland • They comprise two categories of carers for whom age is a most obvious factor in shaping their experiences of caring and the associated costs • Although care theory, including feminist theory, is increasingly gendered, it is far less sensitive to age differences among the diverse participants in care-giving • Research on young carers highlights the important role of age in structuring every facet of the caring process • In response, we develop a new theoretical framework of care-giving which places age, the life-course stage of carers, at the centre of conceptual understanding and analysis

Revisiting mainstream care theory The mainstream care literature does not provide conceptual tools to understand the importance of age: Reasons for this absence: • The literature tends to focus on other socio-economic cultural factors gender, ethnicity, low resource households, household composition, labour force status, rather than age • Even when age is raised, there is no systematic analysis of how caring at a particular stage of the lifecourse may affect the pathways into and experiences of care and costs associated with care provision

Developing the Young Carers theoretical framework • The young carer literature offers insight into creating a framework • It draws attention to the way in which age shapes pathways into care • Draws attention both to the costs in the present, and future/opportunity costs of caring at a young age • Describes the importance of opportunity costs that range well beyond foregone income, including interruptions to primary, secondary and tertiary education, participation in youth activities like sport, future employment opportunities, and effects on social relationships, health and wellbeing and opportunities to live independently and form a relationship of one’s own. • Emphasises the effects on childhood and youth, and the transitions into adulthood, and how caring affects choices about the future • Describes both positive (ie becoming mature, responsible and picking up skills at an early age) and negative effects (ie difficulty attending school, continuing post-school education and entering employment ) associated with caring at a young age. • Helps to frame what a lifecourse approach to care might look like

Policy objectives of an age-sensitive theory • Based on Fisher and Tronto’s (1990) typology of care which distinguishes between different modalities of care provision: • caring about - paying attention to the factors that determine well-being and establishing the need for care; • caring for - taking the initiative for concrete caring activities and taking responsibility to ensure that they are carried out; • taking care of - actually carrying out the daily tasks of care-giving work; • care receiving – signifying that caring is a reciprocal relationship What types of policy and services framework would move the provision of care from totally informal (taking care of) to social provision of care (caring about) supported by formal care services, and how should such a framework take account of age? Researchers developed a categorisation of services based on program objectives and type of intervention: Assistance; Mitigation; Prevention

Differentiation by age • Both young carers (YC) and young adult carers (YAC) described some positive aspects associated with their caring responsibilities. • However, YCs were more likely to have considered the positive aspects, whereas the older cohort (YACs) were more cognisant of some of the more negative aspects of their caring responsibilities and how they impacted on their future decisions. NB: For the Health question, YACs were asked how “satisfied” they were and YCs were asked how “happy” they were with their health.

Impacts on young carers and young adult carers Education The qualitative data from interviews indicate that young adult carers (17 -25) were more likely to find it difficult to balance their care and study responsibilities. • Many young adult carers in university and TAFE felt that it was difficult to balance caring and study because there were more assignments, and they were often also trying to work part-time. • Despite finding it difficult, YACs also said (provided there was a campus within a short distance from the home) that the flexibility of university hours often fit in better with their caring responsibilities than did school. • However, Census data show that gaps between carers and non-carers in participation in study were higher for the 15-19 years group than the 20-24 years group. These findings suggest that the largest gaps for young people caring and their non-caring counterparts may be during the transition phase from school (age 15 – 19 years).

Gaps in participation in study between carers and non-carers by age and gender

Labour force participation • Carers in both age groups were employed at lower rates than their non-caring counterparts, however there were variations by age and gender: • Among females aged 20-24 years carers had lower rates of employment than non-carers; and also lower employment rates than their male counterparts (ABS Census of Population and Housing 2006). • In many States, among the 15-19 year old cohort, males had lower employment rates than their female young carer counterparts (ABS Census of Population and Housing 2006). • Gaps between carers and non-carers in employment rates were generally higher for the 20-24 years age group than the 15-19 years age group. • “I work split-shifts so it’s a lot easier and […] if I need to take a day off or whatever I can work around them with you know taking mum to appointments and stuff “ (young adult carer, female)

Gaps in employment rates between carers and non-carers by age and gender

Social relationships • Young carers (compared with young adult carers) were more likely to say that caring did not have an impact on their social life. Both young carers and young adult carers talked about the importance of the relationships formed with other young carers. • Living independently • Young carers and young adult carers indicated that moving away from their family home was made difficult by their caring responsibilities. This was a common response for both groups of carers, and for parent and sibling care recipients. • “It’s hard because I never imagined that I would still be living at home at 23 […] but your choices… your choices are limited [...] I can’t leave the house” (young adult carer, female) • Health • There were distinct differences between young carers and young adult carers regarding the impact on their health. The health consequences on young adult carers were profound and they were much more likely to assert that their caring responsibilities had a negative, and deteriorating, impact on their health.

Impacts of caregiving: Lifecourse differences • Differences in the lifecourse stage between young carers and young adult carers • In the case of past experiences, the pathways of young carers and young adult carers seem similar. • However, the immediate effects of care provision on their education, employment and health are articulated as more pronounced for young adult carers, who perceive more clearly the constraints upon them. • Corroborated by analysis of the Longitudinal Surveys of Australian Youth about young people aged 15-24 years who are not in education employment or training (NEET) and who are categorised as disconnected from economic activity “(Hillman, 2005), but caregiving responsibilities tend to remain invisible. • The dimension in which the difference between young carers and young adult carers is strongest is in their future aspirations; young adult carers stated emphatically that their caring role is likely to affect their choices about their path in life and their ability to live independently. Young carers were much less likely to do so, possessing a much greater sense of future possibility and opportunities.

Analytical framework for young carer services • The analytical framework of service goals and type of intervention aims to better understand the current emphasis in service provision and identify gaps. • The analytical framework was developed with reference to a number of existing conceptual frameworks which focus on: • young carers’ engagement in different modes of care; • the exercise of agency within a number of constraints; and • the balance between formal and informalcare provision and how this influences agency and modes of care • The framework distinguishes between three categories of service goals and type of intervention: • Assistance • Mitigation • Prevention • In practice, services provide a range of supports and the categories are not mutually exclusive

Service categorisation

Young carers and young adult carers access a range of services , or would benefit from access and usage • All service categories (assistance, mitigation, prevention) apply for both age groups • All service types, with the exception of post-school training and employment assistance, are relevant for both age groups • Access to training and employment assistance are crucial for young adult carers due to their life course stage and transitions • Financial support for young adult carers should consider young people’s life stage and their aspirations to live independently. Periods of informal caregiving need to be taken into account in assessment for independent status for income support, in the same way as periods of paid employment • A preventive focus in service provision is critical for both age groups, which requires a focus on the whole family and the service needs of the family member/s with disability, or chronic illness • Service provision should take account of individual needs, age and life stage and be personalised accordingly

Conclusions and policy implications • Age-sensitive theory for young carers and young adult carers draws attention to the “appropriateness” of young people providing care: what is meant by appropriateness? • Is this an issue of age? • Is this an issue of the types of care provided? • Is this an issue of the intensity and duration of care provided and the impacts on other aspects of everyday life: education, employment, friendships? • Moving toward optimal combinations of formal and informal care at the most appropriate times: provision of assistance, mitigation or preventive services for the person with disability or chronic illness and for potential young carers and young adult carers at onset of disability/illness and caregiving responsibilities. • Major issues for health care, disability care and community services provision: to prevent inappropriate care responsibilities from arising; to mitigate care responsibilities substantially; or to assist young carers and adult carers in their responsibilities which is a much weaker policy goal.

Bettina Cass, Deb Brennan, Cathy Thomson, Trish Hill,