from YAPRap January 2008
by Carers Australia
Kim
I'm Kim and I'm 11. I care for my Mum who's got bipolar. I don't really know what that means except that sometimes Mum's really sad and then sometimes she's alright. Sometimes Mum feels really sick and won't come out of her room for a couple of days. I help her by making tea and washing up and I go next door where I help my friend - she cares for her Mum too. It's cool to have someone else who looks after their Mum cos they understand what you're going through. We look out for each other too.
Young carers are children and young people up to 25 years of age who help care in families where someone has an illness, a disability, a mental illness or who has an alcohol or other drug problem.
The person they help care for might be a parent, a sibling, their own child, a grandparent or other relative, or maybe a friend. They might help out with cleaning or cooking, getting their relative around the house, helping with medicines, keeping them safe, showering or dressing or watching out to make sure that they're feeling OK.
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. Across Australia, over 390,000 children and young people help care for their relatives.
Young carers often perform tasks not normally undertaken by children of their age. Responsibilities may include preparing and cooking meals, looking after younger siblings, providing emotional support and taking care of medications or dressings.
These children need to know that help is available to them and be given information and support in accessing it. They also need to be able to have 'time out' from their responsibilities to enjoy activities with their peers.
Carla
Hey, I'm Carla and I'm 15. I live on the coast with my Dad. He's got depression and is a recovering alcoholic. That means that he used to drink all the time but now he doesn't. Dad's body isn't what it used to be - because of his drinking - and he gets sick a lot. I help out around the house and make sure he's OK. When I was little and Dad's drinking was really bad I used to get really scared. I told one of my teachers and she got my Dad some help. It was hard because I had to go and stay with another family for a while but I'm back now and things are OK.
What's it like to be a young carer?
Many young carers tell us that caring can be a great thing to do - that they're proud of who they are and what they do and that they've built up a whole swag of useful skills. Sometimes though young carers say that caring can affect how they feel, how much time they get to spend with friends, doing schoolwork or holding down a job, and that often they need some help.
How caring impacts on children and young people
Children and young people who help care for a relative or a friend tell us that caring can be a very positive experience.
They tell us that they often feel closer to their families, that they develop new skills and experiences and that they feel good about caring for someone they care about.
Sometimes though, when families aren't well supported, children and young people can miss out on opportunities to go to school, do homework, spend time with friends, have a job or further their studies; they can experience high levels of stress and worry; they can feel confused and uninformed.
Often they need some help.
Craig
I'm Craig, I'm 14 and I care for my little brother, Andy. He's got autism. He can't talk much but he's really good on the piano. I have to help him at home and make sure he doesn't hurt himself. Sometimes it's a real pain because I can't go out skating with my friends but Andy makes me laugh and I can't be angry with him for too long. The thing I hate most is when people tease me at school about my brother. They don't know what it's like to have autism or what it's like to care. I met this guy in Year 10 who is also a young carer and he told me to find him if I was having any problems - he watches out for me, which is great.
Did you know?
- Young carers report that teachers can make a huge impact on their lives just by being aware, by listening to them and believing their stories.
- When adequately supported, young caring can be a positive experience for children, giving them opportunities to develop skills, strengthen relationships with family members, greater feelings of self-worth and esteem and greater confidence.
- Many young carers may not ask for help because they may feel that what they are doing is 'normal' or they are afraid of being seen as different from their peers.
- Young carers will often experience educational difficulties due to their caring responsibilities.
- Many school absences are a result of caring responsibilities.
- Many young carers may not ask for help because they are afraid that someone will think they are not coping and that they should be removed from home.
- Young carers are often not identified until a crisis occurs. Some of these crises may have been avoided if a young carer had been given support at an earlier stage.
- There is a wide range of support and services available to young carers in Australia.
Alex
G'day, I'm Alex, I'm 20 and I care for my older brother who has a brain injury after being in a car accident and my Mum who has a problem with her kidneys. I hate it when we go to the doctors and they tell me to wait in the other room. Mum doesn't speak English and she needs for me to explain stuff but the doctor treats me like a little kid even though I'm the one who does everything. Last year I got a job, and my boss is pretty cool, but I've almost used up all my sick days looking after my family when they're unwell. I wish I could get some help so I didn't have to do everything.
More information
Young Carers Chill-out Room
www.youngcarers.net.au
Carers NSW - Young Carer Project
www.youngcarersnsw.asn.au
yc@carersnsw.asn.au
(02) 9280 4744 or Free Call 1800 242 636
State and Territory Carers Associations
Free Call: 1800 242 636 (9am - 5pm Weekdays)
Stop to Listen
by Tim Moore
This research project, funded by the ACT Department of Disability, Housing and Community Services through the Carers Recognition Grants Program, sought to discover more about the lived experiences, needs and goals of young carers in the ACT in an attempt to identify more responsive and accessible service delivery.
Drowning Inside
We look fine on the Outside
We love and care and flirt
But on the inside we're drowning
Under all the pain and hurt
We try to swim to the surface
Using good times as our power
But the bad times all catch up with us
And we're deep under within the hour
We're wading and wading and wading
Through the pain and hurtful times
People think we're doing quite all right
But read between the lines
They don't know the pain we feel
I wish they could understand
Instead I have to keep on walking
And bury it under the sand
I hate it when they stare at them
They didn't do anything wrong
And yet because they're disabled
It seems they don't even belong
They just keep pushing and pulling
And pushing me more and more
And sometimes I can't take it
And I fall right down to the floor
I don't know how I keep on going
And I don't how we all do
We survive another stressful day
And awake the next all new
It's getting harder everyday
The weights grow more and more
And slowly I sink down deeper
To the bottom of the ocean floor
Options pop up in my life
Of suicidal release
Its seems like a good idea
To let myself rest in peace
I want to let it all go
And drop the weights of pain
I just want it all to stop
Like the end of stormy rain
But then I look at my family
How would they do without me
They'd be stuck with the pain
And I would be free
And so I realise the facts
I can't go and die
I've so much to live for
So I get up and try
Try to keep it together
Try to swim to the top
Try to make it feel all right
Try to make the pain stop
But the pain will never stop
The pain doesn't go away
The pain will always be there
The pain will always stay
We shout out in pain and tears
A Voice that cries for support
A voice that's never heard out
A voice that chocks and distorts
One person may hear this poem
While a million wont even bother
But at least one more person will understand
What it is to be a young carer
- Michael Peet 2004
For the purposes of this research report, young carers were defined as:
children and young people under the age of 18 who care for a family member with an illness or disability, or a drug or alcohol or mental health issue.
It has been shown that caring can be a positive experience for children and young people when they receive adequate levels of support but that when unsupported, young carers can experience significant physical, emotional, social, educational, and financial hardship.
It is discomforting, therefore, to find that most research has shown that for a range of political and practical reasons, many young carers and their families are sustained in positions of significant disadvantage and suffer on without the supports and services that they both need and deserve.
While there has been considerable discussion about the service needs and experiences of carers, generally, there has been little research focusing on the specific needs of young carers and their access to appropriate, responsive and quality services.
This has been for a number of reasons. Firstly, viewed primarily as incapable, children and young people's roles as social citizens are discredited, which leads to a situation where communities either disbelieve or problematise their care responsibilities and fail to afford them the support they need. Secondly, afraid of stigma, inappropriate intervention or shame, many families have felt compelled to hide young caring from the eyes of the community. Thirdly, young caring raises a moral and economic tension – do we condone young caring (including its negative impacts) and save the community significant expense or do we prohibit it and further problematise those who assume such roles?
This study attempted to navigate its way through this potential minefield by acknowledging that young caring is a natural, potentially life-affirming and skill-developing experience and by seeking out children and young people's own reflections on their roles and how they, themselves, see caring impacting on their lives.
Key Findings
Regarding the types of children and young people caring and their levels of responsibility:
- Young carers are often caring for more than one relative at a time, and for relatives with more than one condition;
- Young carers often care for significant periods of time (an average of 6.4 hours per day) for a substantial duration (average of 6 years);
- Young carers caring for a relative with an episodic condition (primarily mental health) do not identify times when they have no care responsibilities;
- Most young carers live in families experiencing financial hardship;
- No young carers in the sample received either a Centrelink Carers Allowance or a Carers Payment; and
- Young carers who are incarcerated often continue their care responsibilities from detention. They may have been sentenced for committing a crime associated with their family's poverty or what they see as their care responsibilities.
Regarding the types of caring tasks they assume:
- A large number of young carers are responsible for tasks around the home (78%), for caring for other relatives (including ensuring their safety) (78%), providing emotional support (74%), helping financially (50%) and protecting the family (68%);
- These caring responsibilities are more intense than their non-caring peers and are most often provided without supervision or support; and
- Young carers often assume similar levels of caring responsibility to adults.
- Regarding the impacts of caring on their lives, their health and wellbeing and their participation:
- Young carers may experience positive impacts of caring including feelings of pride and worth, a sense of accomplishment, greater levels of fitness, greater resilience, stronger family relationships, better outcomes in education, more skills and a positive outlook on life;
- Young carers may experience negative impacts of caring including fatigue, injury, greater levels of stress, anxiety and feelings of hopelessness, family conflict and breakdown, financial insecurity, limited social and recreational opportunities and poor outcomes in education; and
- Young carers caring for a relative with an alcohol or other drug issue are likely to experience similar impacts of care to other young carers, though they may experience greater social isolation, be exposed to less safe situations and be less likely to receive support.
Regarding the support that young carers and their families receive:
- A large number of the young carers in the sample did not receive informal support from their extended family but often were co-carers with siblings and / or parents;
- Only five young carers could identify a service for their family that they could access more than once a month and 7 a support that was on-going;
- Supports that young carers and their families received included respite, domiciliary care, in-home support, emergency relief, and family support; and
- Supports that young carers received focusing on them included personal support, counselling and holiday camps.
- Regarding the types of support they would like to receive:
- Young carers called for more support for their relatives and families including more personal support, respite, in-home care, assistance with employment, family-based rehabilitation, family counselling and mediation, advocacy and financial support; and
- Young carers called for more support for themselves including help with education, community awareness, recognition and respect, training of professionals, information on their relative's condition, information on available services, respite and personal support.
Regarding the perceived and real barriers to their access to services:
- Service issues: many young carers would not access services because they weren't considered be of an adequate standard, because they had had bad experiences in the past and because they could not adequately cater for their family's and cared-for relative's needs;
- Access issues: many young carers felt they could not access services because they were too expensive, did not provide transport or were too far away;
- Promotion issues: many young carers did not access services because they did not know what was available or how to access support or because they felt that they were not eligible;
- Family-based issues: some young carers did not access services because they felt that their families could cope alone, for issues of pride, for fear of scrutiny and blame and because family members preferred to get help internally;
- Co-ordination issues: some young carers did not receive support because it was too difficult to assess the needs of the whole family and to provide services that responded flexibly and holistically; and
- Sociological issues: some young carers did not receive the support they needed because people did not believe that children and young people should or could take on significant care responsibilities, because families felt that they needed to hide their caring for fear of child removal, increased supervision or victim blaming or because services felt that they were not equipped to respond to the needs of children and young people.
More information
From: Stop to Listen: Findings from the ACT Young Carers Research Project by Tim Moore, Youth Coalition of ACT, April 2005
(02) 6247 3540 or www.youthcoalition.net
