Speech by The Hon Jenny Macklin MP

Young Carers’ Forum

Location: Canberra


I would like to thank Aunty Agnes (Shea) for her welcome to country, and acknowledge the traditional owners of this land.

It is wonderful to have all of you here today. I’m sure you had to juggle all your responsibilities to get here but that’s something you do every day. I want to know how you do it. And what the Government can do to make your lives a bit easier. Because I’ll be honest, carers like you have demands that most of us can’t imagine. Constant, exhausting and at times overwhelming. You have responsibilities that most of us don’t have to take on until we’re much older.

When I look around the room, and I see 14 year old Sophie who is one of the youngest carers here, I wonder if you ever get the chance to do normal kids’ things. Sophie lives with her mother and two brothers, caring for her youngest brother with Down Syndrome and her other brother who has mild acquired brain injury.

Then there are sisters, Lizzie and Tori who are 14 and 16 who help their parents care for their 12-year-old brother with high needs autism. And Rachael, also 14, who cares for her older brother with schizophrenia; and Tabitha, 16, who cares for her father and her older sister.

We know that there are more than 170,000 young carers are under the age of 17. Thousands of kids growing up with two jobs – going to school, training or working and being carers. Many of you look after a younger brother or sister with an intellectual disability, or a sole parent with a disability or chronic medical condition. Tessa is 21 and cares for her older brother who has a mental illness; 16-year-old Lachlan looks after his younger sister who has a chromosomal disorder and Clement, 18, cares for his mother.

I’m sure many people don’t realise how many young carers there are and how hard you work. Because so much of what you do is under the radar. You just get on with it. Nine per cent of young people aged between 18 and 25 are carers. One in four young carers looks after someone with a mental illness. Like 17-year-old Vanessa, who cares for her mother who has schizophrenia; and Ricci whose mother has a mental illness.

Many of you care for your parents. Sarah cares for her mother who has the genetic connective tissue disorder. Rhys cares for his father who has lung disease and Keenan also cares for his father who became a quadriplegic after contracting encephalitis

Some of you look after more than one person: Like 17 year old Sam – completing Year 11, working part-time, looking after his mum who has MS and supporting his two younger brothers. It comes as no surprise to me that Sam is Ballarat’s Young Citizen of the Year. It’s the same in Tash’s family. She’s18, cares for her mother who’s seriously ill and also looks after her brother.

Often you deal with multiple problems. Nineteen year old William’s mother has rheumatoid arthritis and bipolar disorder, his brother has autism and his grandfather is frail aged. William takes care of all of them.

All of you show commitment, maturity and love that is inspirational. With demands thrust on you that most of us don’t have to think about until we become parents – when we’re usually older, the caring time period is finite and the experience is usually shared. It’s very different for young carers. Many go it alone – unaware of the available services. Others are worried that they’ll get a rough time if their family is seen as different. They don’t want their parents criticised as inadequate or bad parents They worry their family will be seen as dysfunctional and split up. And sometimes, they’re so busy getting on with it they don’t realise that they fit into the category of young carers. I know helping young carers identify themselves is important to you all. That way you can get the services, counselling, respite and financial support you need.

Left to go it alone, kids who are carers risk terrible social isolation. Without help they can struggle at home and at school. But there can be balance. Chantelle cares for her younger brother who has autism and epilepsy. Once her mum began paid work in the remote community where they live, Chantelle had to give up school at the beginning of Year 12 to care for her brother. But despite the difficulties, she now works part time.

Jessica cares for her mother who has a mental illness. Jessica has just completed the VCE. Simone cares for her 92-year-old grandmother with dementia who needs 24 hours care. She has just finished her VCE and wants to go to university. Fourteen-year-old Corey is the primary carer for his mother. He cooks, does the housework, the washing and does his schooling online.

We must do everything to stop young carers being sidelined because they care. So that Simon, who cares for his sister who has spina bifida and his mother who is blind, can go to university next year.

It worries me that only four per cent of young carers between the ages of 15 and 25 years are still in education, compared with 23 per cent of the general population in that age group. (Carers Australia Survey 2002) Researcher Tim Moore surveyed 51 carers and found almost half of them said they hadn’t achieved as well as they could at school because of their caring responsibilities. Half had difficulties attending school, either being late or missing days altogether, and more than half found it difficult to keep up with homework.

Schools need to recognise and understand the demands of caring. Some already do. Like 15-year-old Carly’s school which has designed a program for her so she can continue looking after her dad who has epilepsy and memory problems as the result of an acquired brain injury. Many young carers are on education pathways which work for them. Chantelle cares for her mother who has had a stroke and has advanced kidney disease. Chantelle recently won a scholarship to study medical science at Griffith University. It can be very challenging balancing her caring role with her university commitments – a topic I’m told she’s passionate about.

Grant is the primary carer for his grandmother who has dementia. He lives with her and is studying nursing to try to help him in his caring role, as well as give him skills for life. And Aaron who has been caring for his mother since he was 11. He’s 22 now and studying medicine at the University of Melbourne.

Employment has its challenges too. Twenty-two year old Raynar knows only too well the constraints caring can impose. She can only work part time because she also cares for her 19 year old brother who has intellectual and physical disabilities. And with constrained employment opportunities, it can be tough making ends meet. That’s why the Government is paying all Carer Payment recipients a lump sum payment from 8 December – $2100 per couple and probably more relevant for you $1400 per single. And people receiving Carer Allowance will receive an extra $1000 for each eligible person in their care. It means Shyne, who’s cared for her mother on her own since she was 12 will get some extra help. Shyne is 21 and helps with every aspect of her mother’s life and receives Carers Allowance and Carer Payment. She plays hockey for the Northern Territory under 18s rep side and won the inaugural Young Carers Award in April as part of the Young Achievers awards.

Building support networks and sharing experiences is also essential. So you know you’re not on your own. I know Emily met up with other young carers before coming to the conference. Emily is 14 and helps care for her older sister who has Rhett’s Syndrome and epilepsy. Fifteen-year-old Courtney, caring for her sister with a severe intellectual disability, is speaking out. She was a finalist in a public speaking competition last month.

More than anyone, young carers need a break sometimes. As dedicated and hardworking as you all are, you can’t go on without some time out. To hang out with your friends, see a movie or sleep. It’s especially important when you’ve been caring for a long time. Like Jessica who’s 23 now and cared for her mother for about 15 years. It means Jessica looked after her mum for most of her childhood. But at the moment very few young carers are using respite services. The latest stats show that only 9 per cent of primary carers aged 15 to 34 had used respite services. It seems there are a number of reasons for this. Not knowing the services are there, cost, transport difficulties. And of course services can be limited in rural and remote areas.

That’s why we’ve made the respite services delivered by the Commonwealth Respite and Carelink Centres more flexible and responsive. For example, the program has been expanded to include secondary young carers in a household and also carers in primary school where their education is being affected by their caring duties. There’s a lot more to do. We need you to be involved in making the changes that can make a difference for you. As a result the Government will be providing $15.7 million for a further two years of the Young Carers Respite and Information Program. It will continue in its new, more flexible format while work with you on how to better meet your needs. Today I’m releasing a summary report of the independent review of the program. Thanks everyone who helped with the review – especially the young carers and Carers Australia.

We need to do everything we can to help you balance completing your education with their caring responsibilities. The double shift is all too familiar to 20 year old Jason. In his last year at school, Jason helped his mother care for his father with Parkinson’s, schizophrenia and dementia and after she died, looked after his dad. Jason works full time in the car industry. Josh helps his mum care for his father. Josh is in Year 11, he also works – but like all of us he sometimes needs someone to lean on. When Josh feels like it’s all too much he has a support person he can call – someone to listen, to offer advice, to organise a home tutor if he’s falling behind at school. Someone Josh can connect with.

All 32 of you here today are very special young people. Compassionate and committed beyond your years. You are also voices for the hundreds of thousands of young carers who each day get on with the job of caring for the people they love. It is inspirational to meet you and hear your stories. And I can promise you; your voices are being heard.