What are the roles of a young carer? Who are young carers?

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2 Michael is 16 years old. When Michael was 13, he was in a car accident with his mother, Jane. Both Michael and Jane were rushed to Intensive Care, where they stayed for some months, during which time Michael s father moved to another city to start a new life. Michael sustained some internal injuries but recovered over time. Jane, however, had considerable damage to her brain, leaving her partially blind and unable to walk. After leaving hospital, Michael became her primary carer and helped her around the home as Michael puts it, he became her legs and her eyes. Though his mother is challenged physically, Michael still sees her as providing for him like all Mums do she still makes sure I m OK, tells me to do my homework and clean my pigsty room. Michael finds it difficult at school sometimes. Getting up early and going to bed late has taken its toll on Michael physically and psychologically. Although he knows that his mum is alright at home by herself, Michael can t help but worry about what s going on, can t stop thinking about whether I did everything she needs. Michael is a self-proclaimed loner. He says that many of his friends don t understand what s going on at home, and he shares stories of others who turned their backs on him when his mother was unwell: they called her retarded and just stopped talking to me. Though he thinks he s good at hiding his feelings from people at school, he does sometimes feel upset and alone. He gets particularly angry when people talk disrespectfully about others with disabilities or illnesses, because it s like they re talking about my Mum. Michael has had some great teachers who have supported him throughout the years. One particular teacher, Mrs O Dwyer, has helped explain his situation to other teachers and has supported him when he hasn t submitted his assignments on time. However, some of Michael s other teachers have just seen his caring role as an excuse, believing that he s just lazy. This upsets Michael and has kept him from seeking help when he needs it most. Michael would love to go to a school where people were taught about illnesses and disabilities, and where they were challenged about the way they treated others. He would like teachers to understand his situation so he has someone who will listen when he needs to talk, or have some flexibility when

3 times are particularly tough. Michael doesn t want any special treatment, but some help at home would also take the pressure off, and tutoring might help him catch up when he is behind. This story is an amalgam of stories from young carers who participated in the Reading, Writing and Responsibility: Young Carers and Education research and was developed to illustrate the main issues that young carers face in their education. Though Michael does not exist as a single entity, each of his experiences is based on a real-life situation. Who are young carers? Young carers are children and young people up to and including 25 years of age who help provide care in families where someone has a chronic illness, a disability or a mental illness; is frail aged; or has an alcohol or other drug problem. At least one in ten children in Australia has some level of responsibility as a carer in their home. This equates to there being, on average, two or three young carers in every classroom in Australia. There are more than 378,000 Australians under the age of 26, of whom 170,000 are under 18 years, providing care to a family member who has a disability or a mental or chronic illness. The average age of a young carer under the age of 18 is likely to be 12 to 13 years. Young carers are equally likely to be male or female. It is likely one-third to one-half of all young carers live in the rural and remote areas of Australia where services that support families are, in general, poorly provided. What are the roles of a young carer? The roles of a young carer may be quite varied. Young carers may provide both practical and emotional support to the people they care for. They may help parents with practical tasks that go beyond the typical level of activities for a young person. Young carers are depended upon to provide a great deal of emotional support by: listening to problems that the cared-for person may be having accompanying an adult to medical appointments. They used to come up and say you ve got a spasticated brother and, like, throw things at my brother and they were really hurtful. Sticking up for him was hard because most of the time they wanted to beat the crap out of him sometimes he didn t know what he was saying back to them so I had to stand up for him and keep him out of trouble. I got roped in because of that and got hurt myself. (Female young carer, 17 years) Because many young people do not identify as carers, the data is likely to significantly underestimate the number of young carers. Many young carers see themselves as daughters, sons, brothers or sisters who are part of a family unit where a member or members have disabilities or chronic, terminal or mental illnesses, rather than as a carer of other family members. I think my thing was I didn t know I was a carer it was just second nature to me, I didn t know the difference. I grew up thinking my family was like everyone else s, except they used to talk about mine. (Female young carer, 17 years) 3

4 interpreting for service providers where English is not the first language of family members, or where speech is a barrier (eg the cared-for person is deaf or has difficulties communicating) providing social support to the cared-for person providing support during periods of increased emotional or physical stress. They may assist with the personal care of a parent or sibling including: dressing bathing toileting mobility (including lifting and carrying) administering or reminding about medication. Young carers may also assist with domestic duties such as: shopping cleaning cooking looking after younger siblings dealing with financial issues negotiating with service providers. Did you know? Many young carers may not ask for help because they feel that what they re doing is normal or they re afraid of being seen as different from their peers. Many young carers may not ask for help because they re afraid that someone will think they re not coping and that they should be removed from the family. Sharing information about their home life can sometimes be difficult for young carers. Young carers are often not identified until a crisis occurs. Some crises could be avoided if young carers had been given support at an earlier stage. Young carers will often experience educational difficulties and school absences due to their caring responsibilities. Caring does not always negatively impact on a young carer s education sometimes there are positives for the young person: They may display an increased maturity level. Their knowledge of certain subjects may be increased. They may relate to adults better than to other young people. They may be able to work well independently. Not all young carers will identify themselves as carers. Young carers report that teachers can have a huge positive impact on their lives just by being aware of their care situations, by listening to them and believing their stories. There is a wide range of supports and services available to young carers in Australia (see pages 7 and 8). When adequately supported, caring can be a positive experience for young people, giving them opportunities to develop skills and confidence, strengthen relationships with family members, and increase their self-esteem and self-worth. Young carers need to be able to have time out from their responsibilities to enjoy activities with their peers. They may also need some space when they are feeling stressed or tired. Kids who have caring responsibilities they have to drop out sometimes. It s not I don t want to go to school anymore, but it s I just can t. (Male young carer, 17 years) I suppose last year I wasn t really doing well in maths and not liking it. I was having a bit of trouble so the principal said that I was allowed to drop a subject this year if that helped me. Y oung carers in the school environment Why young carers value school (Female young carer, 16 years) In their 2001 research, Carers Australia found that only 4 per cent of young carers aged 15 to 25 were engaged in the education system, compared with 23 per cent of the broader youth population. Carers Australia discovered that this was not because young carers did not place value or importance on having an education. Rather, their ability to engage with their education was affected by their responsibilities at home. 4

5 Many young carers see education as important to them. In particular, they value school because it: offers a break from their home lives provides them with opportunities to connect with other young people (particularly those in a similar situation to themselves) and to develop a sense of belonging is a place where they can receive support and information from people who are understanding and supportive provides an opportunity to learn and experience new things. Education is my main priority then socialisation. (Male young carer, 15 years) The value of teachers and other school staff School staff have a great capacity to provide support, guidance and mentoring to children and young people, particularly those experiencing difficulties. A favourite teacher can also be a confidant and a role model for students. Many young carers appreciate having such a person in their lives. Retaining young carers in education Young carers can find it difficult to complete their homework and keep up to date with schoolwork because they have been at home caring or have found it difficult to concentrate in class. This may increase the risk of a young carer withdrawing from study and leaving school prematurely. Innovative programs are supporting particular groups of young people in some secondary schools across Australia, such as: supporting elite athletes in schools (Australian Institute of Sport and the state and territory institutes and academies of sport) Young Parents Access Program (Corio Bay Secondary College, Victoria). This flexible approach to curriculum delivery has been beneficial in assisting young people in unique circumstances to keep up to date with their school work and to increase retention rates in schools. A model similar to these could be developed to assist young carers. I know sometimes I missed stuff in class because I was worried about if Mum was taking her medication and that sort of thing. Sometimes I wouldn t hear what they just said in class. (Female young carer, 16 years) What are the benefits of young people identifying as carers? Young carers have indicated the benefits of discussing their care situations with a teacher or other staff members when those teachers or staff members: were considerate of their situations comforted them in difficult times supported them gave appropriate advice, information and referral. Young carers find reassurance in someone from school knowing and validating their story. They appreciate receiving support and understanding. When young carers discuss their caring role with staff, it is important that they receive an understanding response. It is important to young carers that schools have the appropriate supports in place so that any negative impact, such as bullying or harassment, can be addressed and reduced. Teachers and schools may assist young carers by: providing catch-up time for lesson notes and flexibility with homework for young carers who miss school or are having difficulty keeping up with their workload providing private access to a telephone, or allowing young carers to have mobile phones on during class to keep in contact with the person they care for providing access to computers and the Internet reducing the young carer s workload (eg, informing young carers that they can study for their Higher School Certificate (Years 11 and 12) over three years instead of two) providing curriculum using online technology modifying timetables for the young carer providing information about applying for special consideration, whereby teachers take into account the student s caring responsibilities when marking assessments. (Special consideration for carers is available in some states and territories. Check with your education department for the details and the forms to be completed.) 5

6 supporting transfers to TAFE if the young carer feels it better suits them and their caring situation. Young carers have a range of skills and experiences that need to be valued, validated and possibly recognised through vocational education. Enhancing interaction Young carers may find it difficult to relate to other young people who cannot empathise with their caring responsibilities or are confronted by the challenges the young carer may experience. If young carers are encouraged to interact with other young people, they will have greater opportunity to establish friendships with: other young carers who may be in similar situations other young people who may be able to provide understanding and support when the young carer is having a difficult time. Bullying has been identified as one of the major issues affecting children, young people and schools in Australia today (Kids Help Line, 2004). Young carers have reported being bullied and harassed because of their relative s condition. Incorporating young carers issues into current school bullying programs can assist young carers to develop relationships with other young people. Programs may include: de-stigmatising disabilities, illnesses and mental health issues making young people aware of the role of young carers. More awareness: A lot of people don t know about illnesses. You know, they think that people are just crazy. A lot of people also think that schizophrenia passes on from one generation to another that is why no-one says anything about being a young carer. (Female young carer, 19 years) I was at my school for a year and a half and had lots of friends and I didn t tell them about my brother or stuff. And then they found out he had a disability and they all ditched me. (Female young carer, 17 years) Promoting the caring role A whole-of-school approach and staff commitment to supporting young carers could: promote the positive aspects of caring encourage help-seeking behaviours among students counter negative school cultures that may lead to peer rejection or bullying. If such an approach is adopted in schools, more children with caring responsibilities may come forward to seek support. The following suggestions may promote caring as a positive experience: educating all young people in schools about issues affecting young carers, ensuring that they focus on the positive aspects of being a young carer educating young people in a classroom setting about illnesses, disabilities, mental health and alcohol and other drug problems introducing into the school curriculum self-care, caring and help-seeking skills raising awareness about the support offered to young carers and their families through school newsletters. How can teachers identify a young carer? For various reasons, young carers are often reluctant or unable to identify themselves. Some young carers feel that they shouldn t discuss their family s problems, while others find it difficult to ask for help. Some fear the repercussions of identifying themselves, and some may not even realise that they are carers. Through their direct contact with students, teachers have a prime opportunity to identify young carers. It is important to note that some of the behaviours listed below may be displayed by other young people at risk, not just by those who are young carers. However, when a young person exhibits the following behaviours, they may have caring responsibilities: often late or misses days or even weeks of school for no apparent reason often tired and withdrawn has difficulty joining in extracurricular activities is isolated or a victim of bullying (either because of the family situation or because they lack social skills with their peers) is more confident with adults than with their peers 6

7 under-achieves or over-achieves (homework/ classroom work may be of a poor quality, or is not submitted on time or handed in at all; in contrast, it may be of an exceptionally high standard) displays concern over the cared-for person or over-sensitivity, particularly about family members has behavioural problems, eg is mature beyond their years in the home environment, but vents their frustration or stress at school has physical problems such as back pain from having to lift an adult does not have lunch or lunch money does not have parents attending school events displays depression or anxiety has a strong understanding of illnesses or disabilities is reluctant to talk about home life has financial difficulty. What information can schools provide to young carers? Young carers need to know that: help is available to them there are many other young people like them there are ways to identify as a young carer without negative repercussions they do not have to manage on their own there are services that can assist them in taking a break from their caring responsibilities, eg additional support for them outside school (see contacts on page 8) References information is available about the cared-for person s condition it is important to care for themselves and ensure they stay fit and healthy there are ways their school can support them there are other support services available. Australian Bureau of Statistics 2003, Rural, Regional & Community Trends, Cat , ABS, Canberra. Carers Australia 2001, Young Carers Research Report: Final Report, Department of Family and Community Services, Canberra. Kids Help Line 2004, Info Sheet 7: Bullying, Moore, T, Morrow, R, McArthur, M, Noble-Carr, D, & Gray, J 2006, Reading, Writing and Responsibility: Young Carers and Education, Institute of Child Protection Studies, ACU National, Canberra. (Information and quotes throughout this secondary school information resource have been taken from research by the Institute of Child Protection Studies, ACU National, which was recently commissioned by Carers Australia.) When I was younger they used to have these groups where you could get together with other young carers and meet other girls who were carers so you spend time with them like going to the movies that was fun. It was just good to have a break to do something you want to do to just have a laugh with people who are going through the same things as you. (Female young carer, 12 years) All of my friends are good, but one of my friends is actually also a young carer. It s good to have another person that understands your situation we are a bit closer because we can talk to each other and understand. My other friends are good because they know that I can t come out because I am helping out at home. (Female young carer, 15 years) Knowing that only 6 per cent of young carers had finished their education inspired me to finish for the other young carers. Mum pushed me as well (Male young carer, 16 years) 7

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