Carer’s Week: My son is a young carer

logoIt’s Carer’s Week, organised and supported by quite a few charities in the UK

Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner. Carers give so much to society yet as a consequence of caring, they experience ill health, poverty and discrimination.

Caring Facts

  • There are over 6.5 million carers in the UK.
  • Every day 6,000 people take on new caring responsibilities.
  • Every year two million people take on new caring responsibilities.
  • Most carers (5.7 million) are aged over 18 and the peak age for caring is 50 to 59.
  • 1.5 million carers are aged over the age of 60.
  • There are 175,000 young people under the age of 18 who provide care, 13,000 of these provide care for 50 hours or more per week.
  • One in eight workers in the UK combine work with caring responsibilities for a disabled, ill or frail relative or friend.
  • If you are not a pensioner, or in full time education, you may qualify for £59 a week government allowance, but only if you earn less than £100 a week net.

To mark Carer’s Week, SNJ’s pal Angela Kelly, who is Tania’s co-chair at Family Voice Surrey Parent-Carer Forum, has written this moving piece for us about her own son who is a young carer…

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Young Carers – Angela, Edward & Monty

Young carers are children and young people who look after  or help to look after someone in their family who has an illness, a disability, or is affected by mental ill-health or substance misuse.

Young carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. The tasks undertaken can vary according to the nature of the illness or disability, the level and frequency of need for care and the structure of the family as a whole.

angelaboysThe above is a definition of the tasks a young carer undertakes in their daily lives, and it outlines it quite well.  What the statement cannot tell you though, are the sacrifices a young carer makes, which in many cases amounts to the loss of their childhood.  The social, emotional and wellbeing sacrifices are immense, but often not realised or noticed by the young carer.

However, in my experience  it would be difficult to find a young carer who would see their role in the same way.  Many of the ones I know would shrug their shoulders and tell you it’s “just life”, what they do, what they are used to, how they have been brought up. I have every admiration for them.

My older son, Edward, is classified as a young carer  to his younger brother, even though he has his own difficulties. Although he has my support (many young carers may not have this if they are caring for their parent or parents) there have also been many occasions when he has had take to take on the role of caring for his brother.

He has had his brother, Monty, sleeping in his bed on many occasions to enable me to get some sleep after perhaps two or three nights of tending to his very active brother. He has then had to attend school the following day.

He has tried to help his brother learn positive ways to behave and has helped to feed him when I, after an hour of coaxing, had given up, thoroughly exhausted and despairing at what life had become.

angela2He has missed out on all sorts of trips because I have been unable to take his brother along because his behaviour is too disruptive (there were never many willing babysitters!). He has not been able to join the local cricket club.  However the most heartbreaking is that he has been the object of severe bullying at school because his brother is ‘a retard’. He is, in fact, autistic with seizures and learning difficulties.

School never acknowledged the bullying and merely punished my own son’s retaliation to the bullies. I felt totally helpless.  He has also had to tolerate my guilt and anxiety at not being able to do many of the things with him that I wanted, and he needed me, to.  Instead we snatch the odd outing together and have lunch together now and then. Not really the mum and son things I envisaged when I dreamed of what having children would be like.

Despite all of this, the love they have for each other is amazing to see. They fight and fall out; which siblings don’t!  I do know that Edward would do anything for his brother (except watch CBeebies – there is a limit!).  His passion for fishing that he learned from his older siblings (who have moved out and are living independently) has caught  on and he has now hooked Monty into the sport, tiny steps so far but one day it might be a shared interest they could do together, so I am hopeful.

I asked Edward just now if he thought he was a young carer and he responded, “Nah, not really, it,s just what I do.”

Says it all really!

Angela wrote about a Day With Monty a while ago on SNJ. Read it here

Daily Mirror Launches Caring For Carers Campaign

The Daily Mirror is today launching a new “Caring For Carer’s” campaign to highlight the disgraceful situation regarding the level of benefits for people who care for disabled relatives and friends.

At the moment, Carer’s Allowance is just over £53 a week, no matter how many people you care for. Both my sons qualify for Disability Living Allowance for their ASD and so I am entitled to receive this paltry amount. But, should I be lucky enough to be able to find a part-time job that I can do while they are at school, I cannot earn more than £95 a week net or I lose the benefit.

Before I had children I could earn up to £200 a day. I had intended to go back to work after they were born, but because of their disabilities, I was not able to leave them in the care of anyone else. To do so would have meant finding a specialist nanny, the cost of which for two children would have wiped out my earnings. Added to this, the fact that a journalist’s life is shift-working and the situation would have been untenable.

When my sons were in mainstream school they would sometimes refuse to go because of the stresses they faced in that environment, meaning I would have to have them at home all day. What kind of employer could put up with a worker needing great chunks of time off? My youngest needed one-to-one swimming lessons as he could not cope in a group and this was expensive (and every child should learn how to swim if they are able). I also helped out in school several times a week because I felt so guilty that they were difficult to cope with.

Now, despite the fact they are both at a specialist school, I am still unable to get a full-time job because of the long holidays they have. I cannot leave them in a holiday scheme because they would find it distressing which would have a knock on effect for their lives and ours as a whole. So, we must rely on my husband’s income (and he was out of work for six months this year), our boys’ DLA and my princely sum of £53.10 Carer’s Allowance. We live in Surrey, an expensive part of the country, because it is near to their school. We are only glad that their fees are now paid by the LEA or we would have to sell our house and seriously downsize to afford the cost. Before the LEA agreed to take responsibility for the fees, all the DLA and Carer’s Allowance went towards making a small dent in the special school fees. Even now, it still disappears into the great well of  things they require for school and to support their special needs.

But still, I would say that we are lucky because we have at least one decent income (that my husband has to travel three hours a day to earn). What if something happened to him (God forbid)? Then I would have to care for all three of them on £53.10 a week. This is the situation for many carers today. Many face huge debts as well as the stress of caring for someone who is sick or disabled or the headache of making ends meet on a pittance.

This is what the Daily Mirror says:

These are the Mirror’s three demands for the Caring for Carers campaign, which we are launching today:

An immediate Government review of carers’ benefits and the Carer’s Allowance to be increased.

More respite breaks and health checks for carers.

Carer’s Leave to be made into law so carers can ask employers for discretionary time off work.

I whole-heartedly welcome this campaign and hope you will support it too. How can you help? You can visit the Daily Mirror’s blog page by Emily Cook to read the whole story. Then you can visit the Carer’s UK site to sign their Poverty Charter in support of the campaign. If you’re reading this you probably have an interest in special needs, so I hope you will take a couple of minutes to do this. I am a carer, though lucky enough not to be on the poverty line. After our recent brush with redundancy though, I know that could change in the blink of an eye. So I am sighing the charter and will do anything I can to support this worthy cause and I hope you will join me.

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Call for increase in Carer’s Allowance

UK Autism Foundation backs call for an increase in Carer’s Allowance

The UK Autism Foundation has backed the call for a substantial increase in the carer’s allowance.

There are six million carers in the United Kingdom who look after family members or friends at home and often struggle to pay for their basic needs. Carers are finding it difficult to apply for the allowance because of the restrictions -you have to be caring for more than 35 hours a week. You cannot study for 21 hours or more. If you are receiving a state pension, the two benefits cancel each other out.As a result of the restrictions fewer than 500,000 people get the carer’s allowance. The UK Autism Foundation has joined many UK charities, calling on Her Majesty’s Government to increase the allowance and to place less restrictions – in order for carers to receive financial support.

Ivan Corea of the UK Autism Foundation said: ‘There are families with autism who are plunging into poverty as a result of the current economic crisis. The welfare system needs reform but parents and carers of children and adults with autism and Asperger’s Syndrome need urgent help not in ten years time but in 2009. We are calling for urgent help for parents and carers where autism is concerned – the UK Autism Foundation has been campaigning for substantial increases in tax credits, the disability living allowance and the carer’s allowance.’

Over 200 MPs of all parties in the House of Commons have signed three early day motions backing the call of the UK Autism Foundation for more support for parents, carers, children and adults with autism and Asperger’s Syndrome including increasing the carer’s allowance.

There are over 500,000 people with autism in the UK. Many parents care for children and adults with autism and Asperger’s Syndrome.Many are struggling to pay bills as a result of the economic downturn. Some are in fuel poverty. The UK Autism Foundation has been lobbying Her Majesty’s Government to help parents and carers during these difficult times.

Source: UK Autism Foundation