Young Adult Carers in the UK: experiences, needs and services for carers aged 16-24 Fiona Becker The University of Not

1. Young Adult Carers in the UK: experiences, needs and services for carers aged 16-24Fiona Becker The University of Nottingham23rd March 2009

2. Outline • Context: young carers 1992-2007 • Our study • Census data 2001 • Headline findings 16-17s • Detailed findings 18-24s • Models of service delivery • Needs of young adult carers • Issues for consideration

3. Focus on young carers: 1992 • No reliable government figures on the number of young carers • 2 or 3 small-scale publications • 2 dedicated young carers projects • No law, policy or guidance focused specifically on young carers • Very little public or professional awareness or recognition of young carers

4. Focus on young carers: 2008 • Government statistics (Census 2001) • Dozens of research studies • 350 dedicated young carers projects in the UK in contact with approx 30,000 young carers • Legal rights, policy and guidance specifically for young carers, National Carers Strategies etc • Extensive public and professional recognition of young carers • TV documentaries

5. The research study • Literature review • Secondary analysis of 2001 Census data • Survey of 30 young carers project workers • Survey of 13 adult carers services • Five focus groups with 29 young carers aged 16-17 • Discussions with staff in focus group sites • In-depth interviews with 25 young adult carers aged 18-24 • Two consultation workshops with 45 project workers • Analysis, synthesis and writing up

6. Number of carers in UK (Census 2001) • 5.8 million carers (10% of the total population) • 175,000 of these are children under 18 (2% of all children are young carers) • 230,000 are carers aged 18-24 (5% of all young adults are carers)

7. Number, % and age of young carers aged 0-24 in the UK, by hours caring per week (2001 Census)

8. Findings: young carers aged 16-17 • Most participants have cared throughout their childhood • They show many of the characteristics (and outcomes) of being a young carer • Evidence of conflict between their needs for independence and increased expectations • Variable school experiences • Many reported a lack of adequate career advice or support • Low income families affects quality of life, opportunities and aspirations • Great concern about support for them post 18 • Variable evidence that young carers projects systematically prepared young carers for transitions (life events and services)

9. Positives Gaining life skills Preparation for independence Maturity Close family relationships Giving something back Development of empathy, sensitivity and caring skills Development of skills and interests for care-related employment Negatives Poor emotional well-being: worry, stress, anxiety, depression, anger, resentment and resignation Physical ill-health – tiredness,exhaustion, back-ache, colds Neglectful of own health and fitness Risk-taking behaviours Positives and negatives of caring (16-24 years)

10. Findings: young adult carers aged 18-24 • The participants • Who are they caring for and why? • Care tasks • Key themes: - leaving home - friendships - education - careers & employment - knowledge gap

11. The participants • 25 participants: 18 female and 7 male • Age range: 18 - 24 years (average 19 years) • Ethnicity: White British, Welsh, Scottish, Pakistani & Indian • 7 fieldwork sites across Britain

12. Who are they caring for & why? Who do they care for? Mother: 18 Sibling: 5 Others: father(2), siblings (1), uncle (1), partner (1), grandma (1) Caring for more than one person: 5 Parents themselves: 3 Onset of caring From 4 to 17 years Why? High number of single parent families (15), family structure and position in family, extent to which formal care services are provided or accepted, alternative informal support, established pattern of caring

13. Type and frequency of care tasks Providing caring tasks ‘a lot of the time’: • Two thirds performed household tasks • Two thirds were providing emotional care • A third were providing practical support • A third were providing personal and intimate care Many others were providing a combination of tasks ‘some’ or ‘a lot of the time’ Impacts: little time for themselves, juggling competing demands, no space for spontaneity, restricted opportunities for leisure, relationships, employment and training

14. Caring tasks: participant perspective “Because it’s like if my father’s drunk and my mum’s cut herself at the same time we’ve got to try and cope with the two of them, and it’s kind of hard because I don’t want to leave my sister, even though she’s 18, I don’t want to leave her with my father and go down the hospital with my mum, and my father can’t even go down the hospital with my mum because he shouts and swears” Kelly, aged 20

15. Leaving home or not? Two thirds were living at home with the remainder either living at university or in their own home Decisions about leaving home are often complex and difficult, and in many cases choice about when to leave is restricted Barriers: close inter-dependent relationship, low income, burden it will place on others, fear of consequences, guilt, low confidence, gender and cultural expectations Enablers: family encouragement, condition of the person being supported and their willingness to accept formal support, other informal support, quality of the care package, and money/grants

16. Leaving home: participant perspectives “I was always thinking oh my god like yes it’s only London but I think it’s two hours away, what if she fell, what if something happened? That’s going to take me two hours and the thought of being that far away from her just really scared me” Ellie, aged 20 “ When I talk to my friends about the future they always think about living alone or with a partner, and whereas I’m always thinking we’ve got to have a room downstairs and a toilet downstairs” Daljit ,aged 21

17. Friendships and leisure • A third were able to participate in activities or hobbies of some kind either within or outside the home • A quarter of the participants were supporting other young carers • Two thirds were not participating in any sporting activity • Caring responsibilities constrained their wish for more of a social life • Limited transport restricts and isolates carers in rural locations • Participation in leisure activities & holidays is on a continuum • Friends are very important and often they chosen carefully • ‘Burden of their maturity’ can inhibit their ability to make friends • Some find it hard to have friends back to their home

18. School • School as ‘sanctuary’ or ‘misery’ • Supportive and non-supportive teachers • Bullying • Attendance : affected or unaffected • Attainment – some do very well and achieve good GCSEs/A levels, others leave with no or few qualifications due to learning difficulties, poor attendance and lack of appropriate support

19. School: participant perspectives “They didn’t understand, they really didn’t take into consideration at all that at home I didn’t have time to do homework or anything, and so like most lunchtimes I’d be in like detention or something, doing my homework, because when I got home it would be like, oh well need to make tea, need to do all the washing up and do all the cleaning… ”. Natalie, aged 19 “I got set on fire I did because I was bullied about being different, being overweight, where I was staying in 24/7 looking after my parents, I’d always be eating snacks, chocolates and all that…Lots of people think because you’re a guy why would you be happy cleaning, not going out, not drinking, being happy, their automatic assumption is you’re either bent or just weird, let’s beat him up. The bullying side of it was incredible”. Peter, aged 19

20. Further and higher education College/training provider More positive experiences of education at FE colleges – more understanding and flexible, adult-orientated, availability of student services/counselling, less bullying, important location for socialising But instances of drop-out, problems with training/course provider, and basic level qualifications being attained University • Caring often affects the choice of university and ability to leave home • Financial struggle to get to university or remain there • Subject choice affected by caring to some extent – replicate, making a difference or non-care related • Less awareness of students as carers and therefore ‘hidden’ • No specific carers support provide by universities but can tap into student support services • Quality of student life is quite different for those that are carers • Worry and caring at a distance continue for those living away from home

21. FE: participant perspectives “Well the course co-ordinator, she was fantastic with me, she changed into like my second mum kind of thing..I don’t know what I would have done without her really…I didn’t have any money and they would give me money each week so that I could get my food and they made sure I ate when I was in college, just things like that and if I had any sort of problems whatsoever” Becky, aged 18 “ They treat you like an adult, you’re not some little kid that’s dashing around.. They’re far more understanding..” Natalie, aged 19

22. Employment and careers • One quarter were not in employment, education or training (NEET) • 3 were in full-time employment but low income jobs • Remainder were in further or higher education • A third had recently or were currently doing part-time work • Mixedexperience of career support either at school or college but in some cases young adult carers were well supported by specialist carers transition workers • Some careers staff were identifying and referring on young adult carers for carers support services

23. Income • Strong evidence of poverty and social exclusion • Evidence of some young adult carers subsidising the family income • EMA could be withdrawn if attendance reduced • Many young adult carers were unable to get part-time work • No participants were in receipt of Carer’s Allowance • Lacked preparation to understand the ‘benefits maze’

24. The knowledge gap • Unconfident about their rights and entitlements to services or benefits • Lacked information about the care receiver’s health condition and complained that other professionals don’t involve or listen to them sufficiently • Services beyond a young carers service? • Two thirds were unaware of their right to a carer’s assessment • Staff attitude may affect promotion and take-up of carers assessments

25. Models of service delivery • Young carers projects for those aged 16-17 • Emerging models for young adult carers aged 18-24

26. Emerging models of service provision for young adult carers aged 18-24 Sole young carer focus ‘keep in touch’ Focused young carer provision ‘teenage transition support’ Volunteering for the service ‘helping hand’ 16/18 plus service ‘specialist worker’ Partnership approach ‘shared responsibility’ Adult carers services ‘adult service responsibility’ Ad hoc ‘pick n mix’

27. Adult carers centres 8 out of 13 carers centres had contact with young adult carers although numbers were small and contacts brief Barriers to engagement: • Funding constraints • Service level agreements • Lack of self-referrals • Staff felt ill-equipped to work with young adults and their issues • A lack of relationship, coordination and referral between services for young carers and adult carers centres

28. Addressing the needs of young adult carers • Advice, information & guidance • Services and support • Education and training • Job seeking and flexible employment practices • Activities and peer support

29. 1. Needs: advice, information& guidance • Information about money, benefits, grants, carers assessments and services available for carers • Information about services available for the person being supported • Information and guidance about the medical condition and health needs of person they support • Information and advice about the carer’s own health and keeping well • Managing caring tasks safely • Parenting advice and support

30. 2. Needs: services & support • Services that support young adult carers need as carers • Counselling and/or relaxation therapies to build resilience and cope with stress • Breaks from caring • Carers assessments • Emergency planning • Adequate & affordable transport • Suitable housing, aids and adaptations

31. 3. Needs: education & training • Greater awareness, recognition and support for carers in schools, colleges and universities • Early intervention to avoid inappropriate levels of caring and optimum outcomes including academic achievement • Robust anti-bullying strategies • Advice and assistance about opportunities in further and higher education and how to obtain necessary financial assistance • Help to balance the demands of caregiving and further education and ongoing learning

32. 4. Job seeking and flexible employment • Careers advice up to 24 years - sensitive to the implications of caring but not reinforcing caring as the only career option • Information and advice about flexible training opportunities • Employment-seeking assistance: job search, interview skills, CVs, confidence building • Carer-friendly employment practices and support in the workplace

33. 5. Needs: activities & peer support • Activities available locally for leisure and wider participation • Affordable/subsidised activities to promote health, well-being and inclusion • Opportunities to meet other young adult carers • Opportunities for accessing information, advice and guidance and social networking – online/phone

34. Recommendations • Commission, design and deliver services to achieve relevant outcomes: ECM or carers strategy • Participation of young adult carers in the the design/delivery of services they require • Universal and specialist service providers need to be more alert to meeting the specific needs of young adult carers • Better integration between services for young carers and adult carers • Promotion of their legal rights • Integration within local authority carers strategy

35. Implications? Identify the implications for practice and service delivery drawing on the findings from this research study and your own experience in relation to: • Identification and engagement of young adult carers (16-24) • Preparation for transitions • Service provision • Working with other services/agencies

36. Contact details: Fiona Becker Email:fiona.becker@nottingham.ac.uk Tel: 07977 146230