Carer’s Week: Join me on the Carer’s Circle Line

Debs writes….

During National Carers Week, I think we all give more thought to what being a carer actually means.  Most of the time, we are the same as the young carers out there who think “it’s just what we do” but during this week, we can’t open a paper or watch the tv without the impact of caring jumping out at us.

I always think of being a carer as travelling on ……

Carer's Circle Line

We spend our good days at the top of the Circle Line, relaxed and confident.  These are the days when the services have actually worked together, you are getting the support you need, your child or young person is getting the support they need.  Perhaps you have won a battle to get your child into the school you need,  perhaps you have managed to get a place on a Young Carer’s event for your other child or perhaps you have just managed to get more than three hours sleep.

Sadly, however, we also spend days at the bottom of the Circle Line, withdrawn, exhausted or despairing that things may never get better.

When we are having a good day, we all know how quickly one little thing can send us spinning down to the bottom.  Then when we are at the bottom, it is so much more difficult to get back to the top.  It’s like being on the Pirate Ship at the Funfair – you swing back and to until you get enough momentum to hit the top.

You start to climb back up the side of the Circle Line but  you hit “self pity” and it is so difficult to get past here.  Everyone expects you to be there; in fact a lot of people find it easier to deal with you there as it fits in with their idea of how you should be acting.  However, this just knocks you back down to sorrow and anger and you have to start the climb again.

I firmly believe that when we all work together, the practitioners and others involved in my life, should be able to give me that little push (I do mean metaphorically) and help me get back to the top of the Circle Line.

Then, because we just refuse to fit into boxes, I also have to point out that although I may be “relaxed” today when you meet me, I may not be “relaxed” the next time.  I may be “relaxed” and “confident” but my husband may be at “despair” and then don’t forget my children will possibly be somewhere different too.  The dynamics of the family can be our biggest strength at times but can also be the weakest link.

One of the other issues with the Circle Line is that it’s not easy to get off.  The other lines offer universal services so access to them is not always available.  If we continue the Circle Line analogy, then this is when there are only escalators where we need a lift or only  visual signs when I cannot read.  Those who work with our families can usually jump off the Circle Line and access Universal services.  One day, we can only hope that this will be a possibility for all of us too.

All about The LIME Magazine

Today, I welcome Sally Huggett of The LIME Magazine to guest post about her work and publication.

lime logoThe LIME Magazine is a bi-monthly publication for parents and carers of children with special needs. It came about because I have a child with special needs. Daniel was diagnosed with classic Autism and severe learning disabilities when he was 18 months old. He also has Sensory Processing Disorder. This turned my life completely upside down. I was at the time a practicing theatre nurse at our local general hospital. I had also trained as a midwife. I gave up work to look after Daniel full time. I found pretty quickly that there is precious little out there in the way of support once you have been given such earth shattering news. It tends to be a postcode lottery. Some hospitals are more supportive than others. Mine is rubbish.

So I decided I was going to be an authority on the subject. I was going to read everything I could lay my hands on and become an expert in the field so that I could give my child the best I possibly could. I also decided that I wanted to do something so that others finding themselves in my position were not also left with no support. And so The LIME Magazine was born. I set out wanting to provide a support mechanism and resource for parents and professional carers of children with Autism and all other special needs. The magazine is going from strength to strength. It has been up and running since April 2010. In April this year we secured funding and sponsorship from Ford UK. This was a huge coup and I and am really proud of this accolade. They obviously think we have something good going on here. This has enabled me to circulate the magazine to many children’s centres UK wide. The magazine now goes out to many children’s centres, special needs schools and private subscribers. It is doing very well. We have contributors such as Dr Susan Ashley PhD, Clinical Psychologist, who write wonderful articles on a plethora of special needs related issues. I also author a BLOG to support the LIME Magazine. This can be found at http://blog.limemag.co.uk. This talks about all things special needs related and gives an insight into what is coming up in future editions of The LIME Magazine. The LIME can be purchased at http://www.limemag.co.uk.

I am also the Chief Executive of the registered charity http://www.ict4autism.org. This charity aims to provide adaptive computing technology for children with Autism and other Neurological Disorders. We aim to improve the quality of life for these children by aiding their communication skills and also their numeracy and literacy skills so that they may go on to gain qualifications. This will enable them to achieve gainful employment as adults and therefore they will be able to give a little back to the community. The Patron of the charity is TV and Radio Presenter Paul Ross.

The final thing I do is author a personal BLOG called Daniel’s Diary at http://www.thecarer.org. This BLOG is an upbeat diary of life with a child with special needs. It celebrates the achievements of Daniel as well as looks at the tribulations that life can bring. It aims to be a support mechanism and resource also for parents in a similar position. It has a large following and is growing all the time. Please do hop on over and check it out. Daniel’s Diary has a FB Page at http://www.facebook.com/danielsdiary.

Many thanks for reading and I hope that you find the above resources useful. I love to have new followers and love to receive comments so please do leave a comment on one of the BLOGs. I look forward to hearing from you!

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