Harry’s cards

Anna, Harry’s mum, talks about how they came up with the idea for Harry’s cards, and the benefits he has found using them.

“After chatting with him about what to do, we came up with the idea of a set of small cards designed just for him, about him. Each card would have a question and a simple answer to that question. To make them personal we picked a photograph or picture that meant something to Harry.”

In Harry’s own words…

“I came up with the idea when people started asking me “why do you talk funny?” and “what is epilepsy?” so instead of trying to explain it I made these cards and gave them one. It has the question on the front and the answer on the back. They are my very own as they are about me and have a photograph of me on them as well. They help me.”

Anna continues, “We had them designed and sets printed. They are business-card size and a set of them can be kept in a little plastic box. Now when Harry is asked or even if he wants to volunteer the information, he can simply hand over a set and let people read. They also act as a good ice breaker and support in other discussions on cerebral palsy.

“He has presented them in his class and sets of them are available at his school, they are small enough to carry around in his bag or even his pocket. They can over time be added to and changed as Harry grows and develops.

“A simple idea but one which has proved to be very useful in removing the ‘elephant in the room’ (discussing his condition).”

Keep Us Close Family Memories delivered to MPs in style

“What on earth are all these?!” As I piled up five large cardboard boxes filled with almost 300 memory boxes on the counter of the Westminster post room, the disgruntled security guard seemed quite confused. I could have given him the long answer: “This is a collection of over 700 fond family memories, shared by Scope supporters. They’ve written to us, to share memories of sunny holidays and close Christmases, because they believe in the importance of family time together. We have sorted these, and wrapped them beautifully in memory boxes. They want their MP to unwrap this box, read their memories, and remember how much family time together matters, before they go to make important decisions on the Children and Families Bill. Really, what’s in these boxes, is pretty amazing.”

In the end, I decided to just tell him they were simply ‘message to MPs’ – he appeared to be in a bit of a rush. He accepted this, and all the boxes, and now they are on their journey through the corridors of Westminster to land on MPs’ desks.

I really believe that when MPs open their memory boxes, after some curiosity, they’ll be pleasantly surprised. We have been quite touched by the small insights into the family lives of Scope supporters. It’s difficult to not feel that family really is central to many people’s lives after reading the collection of memories that have arrived. When MPs read about their constituents’ day trips to the zoo, their sandwiches on the beach, or their first Christmas with their grandchildren, I hope they too will be reminded that the closeness of family is something to treasure – and is so important for families with disabled children.

It’s now down to them to take this feeling, and turn it into action when the Children and Families Bill goes through the next stages in the coming weeks. For Scope campaigners, it’s good to know what we hope will act as the final reminder, is safely on the way.

Thank you to everyone who has contributed by sharing their family memory, your support has been overwhelming. We’ll keep you updated on the progress of the Children and Families Bill, and the Keep Us Close campaign.

Abseiling for Scope

Guest post from Emma Goddard who is a Life Skills Tutor at Scope’s Roman House

I’m not sure if I am going abseiling as I have turned into a bit of a blog tart and wanted something exciting to write about..!

So, I’m in the office, Thursday afternoon, ticked off most of my to do list, and was caught staring into the middle distance, when Simon Pugsley glides into the room and announces that he is going to abseil down the side of Basingstoke Hospital for Scope, Roman House and Shop Mobility, who have organised this challenge. Now, as a side issue, over the Christmas break, I have been religiously listening to Paul McKenna ‘I can make you confident CD’  In it he says, you can do anything, imagine a day when everything goes perfectly etc etc, challenge yourself, I was thinking more upon the lines of learning to use the office scanner, but no, my inner mind has decided that it would be more attention seeking to jump of six floors with my extremely large arse.

Yes I pipe up, I can do that, and secretly pray that the fundraising admin will be so complex that I can wriggle out of it. Nope, thanks Fundraising team, you have made it really simple, thanks… thanks a bunch!

It’s all kicking off at Basingstoke Hospital, 10 February 2013, 10 am onwards.

Second thoughts?

So, last night, tucked up in bed, winceyette nightie on, (floor length, long sleeves) (no jokes, really own one, can’t beat it!) And I’m thinking, what to wear on Sunday for my abseil jump. I have had lots of helpful tips, no skirts, no dangly necklace, lest I hang myself, no flares, and the most helpful comment, if you do fall off, your only a hop, skip and a jump from A&E. I can’t tell you have grateful I am that Scope doesn’t have a cuddly mascot, the very thought of jumping off a building as a teddy with a bad eye… well, words fail me.

But, do you know, it’s going to be worth it. Customers at Scope, Roman House, have to face challenges that society throws at them daily. Accessing the community, getting people to see through the disability and see the potential within. It’s the assumption that is associated with disabilities, that they can’t do, won’t do and never will.

Well, I’ll let you into a secret, customers at Scope, Roman House, CAN do, WANT to do, and WILL do it, and I for one feel very privileged to share their journey.

Please sponsor our abseil! 

Children and Families Bill debate

Scope has been inundated with support from across the country for our campaign for better local services for disabled children and their families.

Thousands upon thousands of emails, letters, postcards, wish stars and memories have been sent to MPs calling on them to take action as part of our Keep Us Close campaign. And they have a real opportunity to do so with theChildren and Families Bill, poised to enter Parliament in a matter of weeks.

However, the impact that this support is having inside Westminster is not always so easy to see.

On Wednesday this week, a debate is being held in Parliament specifically on why the Government must improve local services for disabled children and their families. Tabled by Angela Smith MP, this gives MPs who have a strong interest in supporting disabled children and their families a chance to quiz the Government on their proposals – and tell them why they must be strengthened.

Local services for disabled children

Scope has been calling on the Government to improve inclusive and accessible local services for disabled children and their families by strengthening something called the ‘local offer’ which is contained in the Government’s proposals.

Currently, the ‘local offer’ is too weak to really make a difference. We want to see a ‘local offer’ that gives parents with disabled children a clear promise of the support that they can expect to receive locally – and the right to hold their local authority to account so that they receive this support.

The families we speak to have to battle too hard, too often, to get this support – and when they do, they have to travel far too far away to get it. That’s just not right.

Children and Families Bill debate

The debate is being held in the ornate Westminster Hall, and will be one of the final chances that MPs have to ask the Government Minister, Edward Timpson MP, what he is doing in the Bill to improve local services for disabled children and their families. The Bill is due to enter Parliament imminently at the start of its passage to become law, and we know that MPs from all across the House of Commons – and from all political parties – feel very strongly that the Government must get the reforms right.

But main reason they feel strongly that this must not be a wasted opportunity is because they know how important an issue this is for their constituents – the people they represent. For months now, their postbags and inboxes have been filled with Scope supporters telling them they can’t let this opportunity pass.

Alongside the support of all our campaigners, we are working with MPs to turn up the pressure on the Government to make sure they get the reforms right, and Wednesday afternoon gives them a real chance to do so.

You can watch the debate at 4.30pm on Wednesday 20 January.

Dog therapy

The Sun has published a story with the headline ‘See your Dogtor: Mutts who save lives and provide therapy’ – it’s a round-up of some of the great work that medical assistance dogs do. The centre piece is the story of Alice Boardman, her son Alex, six, and brother Tom, seven, and the impact Labrador-Retriever cross Lucie had when she joined the family. They live in Chorley, Lancs, with Alice’s engineer husband Dave. Read what Alice says on The Sun’s website.

But Alice has also had support from our parent support group, and here is what she had to say about Face 2 Face:

“I was a bit guarded at the beginning but Julia from Face to Face said she would just come along for a chat, so I decided to go for it. It was the best decision I’ve made and I am forever grateful to Julia. By the time you’ve made your first Face to Face appointment you’ve taken a huge step: you’ve admitted you’re not Superwoman! Julia introduced me to a lovely lady who has two disabled children. To meet another parent who has no agenda other than to support me, well, it was just wonderful. I needed someone to say: “I’ve been there.” Some of the sessions were emotional, some weren’t. For me, the sessions looked at where I am now and where I want to be in the future.

“The most empowering thing was voicing my deepest, darkest thoughts and knowing that I wasn’t being judged. Julia told me to open up and be honest about my feelings. After years of putting on a brave face it was such a relief. Julia was the first person to say to me it was ok to talk about all the hard parts of my life. Nobody had ever said that to me before. It felt like being given permission to be selfish for an hour or two and just think about me.”

Find out more about Support Dogs, the charity that provided and trained Lucie

Out and about

This blog entry is from Scope’s Our Generation project in Wakefield.

A Happy New Year to all our colleagues, mentors and mentees and stakeholders. Despite the snowy weather here in Wakefield giving us all the urge to hibernate, January has been a busy month so far and is due to get even busier. Having eaten too many chocolates at Christmas, the Our Generation mentoring team are now getting out and about, visiting groups and organisations to recruit new mentors and befrienders for our first accredited training course in February.

We are excited that the referrals are starting to come in and looking forward to welcoming new people into the project.

The Our Generation project has also had a visit from Scope’s new Executive Director of Services Carol Tozer, and we were really pleased that two of our mentors and one mentee popped into the office to meet her. They were able to give Carol a great insight into what motivated them to become involved in the project and what difference it has made to their lives.

The next course begins on 7 February here at our office at 10.30am. It aims to cover a wealth of information about being a mentor or befriender, and gives an insight into the support you will receive as a Scope volunteer. Travel expenses and other support expenses will be paid, and lunch is provided.

For further information please call 01924 256999 or email ourgeneration@scope.org.uk.

Lords debate support for BME disabled people

The research team here at Scope has been working with the Equalities National Council (ENC) – a charity run by and working with black and minority ethnic (BME) disabled people – to find out about the lives of BME disabled people, and to find ways they can be better supported.

Our research findings – published last year – were shocking:

  • There are at least one million disabled people from BME background in the UK and this figure is growing.
  • One in two BME disabled people live in poverty.
  • Only two in every five BME disabled people have a job.

Last week the House of Lords recognised the importance of this work, and held a two and a half hour debate on the report. The debate was tabled by the former Minister for Disabled People, Lord Paul Boateng.

The challenges BME disabled people face

The debate gave lifted the lid on the challenges BME disabled people face. Over 15 Peers spoke powerfully and movingly about issues ranging from the importance of translation services for BME disabled people, to the need to fix the social care system so that everyone who needs care and support can get it.

Many of the Lords echoed our recommendations. Scope and ENC found that many disabled people are falling between the cracks of Government departments – an issue that the Government Minister Baroness Browning argued needed to be resolved.

Disabled children from BME communities experience deep and saddening barriers to the support they need. Baroness Tyler recognised this in her contribution to the debate, and asked the Government to consider the recommendation of Scope’s Keep Us Close campaign to ensure that BME disabled people can access the right services in their local area.

Our report also found that the best way to provide services is to support small, user-led organisations like ENC to provide local services, a point Lord Addington made in his speech.
Although the debate successfully raised awareness of the challenges BME disabled people face, it is important to recognise that this is just the first step in a longer journey of change for this often overlooked community.

In the words of Lord Boateng, when introducing the debate: “To be black, a member of an ethnic minority or disabled is to know what it is to be invisible – to be there but somehow not be seen, or to be heard but simply not heeded.

“You suffer a double whammy of neglect and disadvantage. All too often you find yourself between a rock and a hard place.

“When we take action to enable and empower all of us in our God-given and precious diversity, then we really will have something to celebrate.”

You can find a transcript of the full debate in the Lords here.

Great Donate time again! Recycle your wardrobe

Time again to have a good clear out after receiving all those nice new Christmas presents and help us replenish the supplies of Scope charity shops with some clean, quality goods.

Can you help us? Every bag you fill up is worth about £20 to Scope. Ladies handbags and belts bring a lot of money in and any brand named clothing items.

We do this several times a year from Meldreth and take our bags to our local Scope charity shop in Cambridge. We would like to ask parents and friends to participate this year. If you are coming to visit residents in the next few weeks please drop off your bags in reception as close to Friday 18 January as possible.

Our residents will deliver the bags to the Cambridge store on Wednesday 23 January.

Thank you for your continued support.

The Bill of Rights Commission’s final report misses the point

It’s been a long wait, but the much anticipated report by the Bill of Rights Commission has finally seen the light of the day.

The strength of feeling of support for preserving existing levels of human rights protection is something that the Commission will have heard loud and clear, at least if one is to judge by the responses to its consultation exercises. There has been an unequivocal call from disabled people as well as many other groups not to erode the crucial safety net provided by the Human Rights Act (HRA).

It can only be welcomed then that the Commission’s report – though otherwise largely mired in differences of positions between the various members on the Commission – stresses that there should be “no less protection” than is currently contained in the HRA. However, the prospects of a different language being used in a future Bill of Rights does raise at least some doubts of how this will be achieved in practice.

UK Bill of Rights

More important is, however, what the report identifies as being the need for change. This would appear to mostly come from the need for a rebranding exercise insomuch as a UK Bill of Rights is seen to provide a way to bring about a greater sense of ownership among the public. The majority of the Commission appears to believe that given the polarised nature of the debate, it is unlikely that “public perceptions are likely to change in any substantial way” through public education.

If we were to go down this route, repackaging the Human Rights Act as a UK Bill of Rights would not only be potentially dangerous as it would risk diluting current protection, but also amount to a missed opportunity. Disabled people have been clear that consideration of a Bill of Rights need a discussion about how best to progress protection further and how to afford greater recognition to the rights contained in the UN Convention on the Rights of Persons with Disabilities.

On that count, the Commission’s report fails to deliver. Both the Government’s disability strategy and disabled people agree that the UN Convention needs to be at the heart of reforms moving forwards. In considering the future of our human rights laws, the Government should recognise that rather than an exercise about mere cosmetic re-branding, the prospects of developing a Bill of Rights should be driven by a need to look where additional protections could be brought in, and set a path towards incorporation of internationally recognised standards into domestic law.

Birchwood resident’s painting raises funds for disability design

Mark Urwin's painting

Mark Urwin is a disabled resident at the Scope Birchwood service in Cheshamwhere weekly exploratory art classes have been running for four years. Mark’s beautifully created impression of Manet’s A Bar at the Folies-Bergeres has proudly been sold to raise money for DEMAND (Design and Manufacture for Disability) in thanks for their specially designed easels.

The artists at Birchwood have very specific needs to help each individual artist to paint. Personally designed easels created by DEMAND have enabled the group of artists much more freedom and control in their creations where previously the class volunteers had to hold the canvas, making certain angles to paint more awkward.

The vibrancy of colour and appealing scenes of modern life depicted in Manet’s Impressionist portraits have drawn fascination and inspiration for many artists since the 19th Century. A great painting can evoke excitement and offer a compelling insight into the life of an artist. The story behind artist Mark Urwin’s recent interpretive portrait is the perfect depiction of how DEMAND’s creations can help artists like Mark to realise their imagination.

Impact of community art classes at Birchwood

Anita Osbourne is one of the community art tutors at Birchwood and says, “With the painting came this extraordinary outpouring of themselves and they have just been amazing.”

Another great part of DEMAND’s design is that the easel allows the artist to keep their talk boards on their laps so that they don’t lose their voices whilst they are painting. This easel enables and empowers the artists. Without the right equipment the extraordinary talents of artist Mark may not have been discovered.

During the art classes Mark showed a passionate interest in History of Art, particularly the works of impressionist painter Édouard Manet whose colourful scenes of everyday modern life have captivated art lovers worldwide. Inspired by the his new found freedom in painting, Mark recently contributed some of his work to a DEMAND charity fundraiser to help raise funds for further equipment.

“When I paint, I feel free and excited. I think about beauty and I picture love. Some colours excite me. Green is very promising; it lifts my mood.”

Mark’s portrait of A Bar at the Folies-Bergeres is a remarkable display of his artistic skill and passion. It is wonderful to witness how much can be achieved through the help of DEMAND’s designs by offering a simple yet vital form of freedom. Mark’s work has recently sold to a private buyer for over £300. The enjoyment and ease that the DEMAND’s easels have given the artists at Birchwood has inspired many others people with disabilities to take up art. With the help of Mark, more funding is being raised to produce the artist’s easels.

Support Mark’s art

Those wishing to contribute to Mark’s easel fund can donate online at http://www.justgiving.com/Markseasel

Contact Birchwood if you would like to buy one of their artists’ 2013 calendars.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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