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Latest Ouch! update January 2012

BBC South: Martin Hedley on living with Asperger's
Guest | 14:04 UK time, Wednesday, 4 January 2012

BBC South is currently running a series of features on life with Asperger's syndrome.

The first film focuses on Martin Hedley, a 44-year-old unemployed singer songwriter from Weymouth in Dorset.

Martin was diagnosed with the autistic spectrum disorder 10 years ago. He has since gone on to achieve a first class honours BA degree in music design and performance and an MA in post production composing. Martin is heavily involved with volunteering in his community, and has recently created the Chapelhay Community Partnership. Martin describes the project as "a community collective for people like myself who can not access the opportunities in mainstream society, to come together to produce dance, theatre, film and multimedia, as well as exploiting the rich heritage Weymouth has to offer".

The BBC South film follows Martin and his daughter Rowan, 15, as they renovate the building acquired to house this project and take a challenging trip to Glastonbury.

Martin writes for Ouch! On why he agreed to be involved in a film about the condition he calls "Asperger" and what he hopes the broadcast will achieve.

I spent 18 months setting up the Chapelhay project, using my skills and experience in engineering and building work on the venue. However, ironically during that time I became starved of the very arts/media industry with which I set the project up to engage. So I revelled in the film-making process, as it allowed me to use my creativity and record my songs, which have been included in the final edit.

I was apprehensive when first asked to take part. However, I agreed because I hoped that the film would help to show that with individually appropriate support, people with Asperger can lead full and productive lives. Without this support, the result can be loneliness, misery and sometimes the premature ending of their lives.

When the film was being made, I was beginning to feel helpless at the lack of social care in my own situation and knew I was heading for my second breakdown.

As part of the film, I was asked to make a video diary. I hoped that the process would help my daughter, partner and I to highlight issues we experience as a family. I wanted to gain a better understanding of how Asperger effects our communications. It is sometimes hard to see where the person ends and the condition begins.

As the diary progressed I realised how much I had been holding on to my tether and, due to a lack of appropriate support, how precarious my endeavours had become as the meltdown at Glastonbury shows.

Incidentally I have not seen the film at time of writing. I know when I do I will be embarrassed/deeply unsettled but I'm not the only person who feels desperate at a lack of appropriate support, so needs must!

As the producer and I worked on the concept of my case study I began to see how we could make this a bigger story, more generic to people with Asperger. I was being given an opportunity to demonstrate the complexities of our condition.

Now not only was I expressing myself artistically through the process, but also campaigning for something I am passionate about. I began to feel very empowered.

There was an edge of concern too. What effect would exposing myself and my family in this way have? I always wanted to promote my music to the media - but not necessarily my private life. However, yet again, with the aim of raising awareness, needs must!

Martin Hedley's film is available now to watch online.

 

‘Morale is high’ for Atlantic rowers
Radio 4’s Today Programme | Thursday, 5 January 2012

The group of injured servicemen rowing the Atlantic to try to raise £1m for wounded soldiers has hit a series of difficulties with the breakdown of their drinking water system and a string of physical ailments.

 

Sharp rise in social care fees a stealth tax – Labour
Nick Triggle | Friday, 30 December 2011

There has been a sharp rise in the cost of council services for elderly and disabled people, Labour has warned.

Data from 93 out of 153 councils in England showed fees for meals on wheels have gone up by 13% over the last two years, while transport rose by 33%.

The survey also found huge regional variations in the charges, which Labour says have become a stealth tax.

The government said local authorities were responsible for non-residential care and changes should be affordable.

Cross-party talks on the future funding of care are to begin in the new year, the BBC understands.

The findings, the result of a freedom of information request by the Labour party, also found differences in the fees levied and the caps on the sum people - mainly the elderly - have to pay.

...More than 500,000 people receive some form of home help from councils.  Some of those will be paying for it while those with savings of below £13,000 get it completely free.

The data showed charges for home care, such as helping washing and dressing, now stood at £13.49 an hour - a rise of 6% in two years.

It means the average person, which is classed as someone getting 10 hours support a week, pays over £7,000 a year if they do not qualify for state help.

Marked differences were also identified in the fees charged from area to area. For example, the London borough of Tower Hamlets provides free personal care, while in Cheshire East it costs more than £20 an hour.

Meanwhile, meals on wheels fees have risen by 13% over the last two years to £3.44 for each meal and transport to places such as day centres had risen to £2.32 per journey on average - an increase of 33% over the same period.

'Lifeline'

Some councils limit the weekly costs people are required to pay, ranging from a cap of £105 per week in Hackney to £900 per week in Brighton and Hove.

...Councillor David Rogers, of the Local Government Association, said the results highlighted that the current social care system "is not fit for purpose".

"It is under funded and in need of urgent reform," he said.

A Department of Health spokeswoman said: "Local authorities are responsible for non-residential care. Any charges they choose to make must be fair and affordable."

The findings come as cross-party talks look set to start in the new year about reforming social care.

Ministers have already indicated they want to publish plans for overhauling the current means-tested system in the spring.

But much will depend on whether political consensus can be achieved - and so Labour and government ministers have agreed to hold joint talks about changing the system, the BBC understands.

The last cross-party talks on the future of care funding broke down before the general election.

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Martin Hedley