Scope’s 2014 highlights

2014 has been a really exciting year for Scope – full of awkward, nostalgic, sexy and some just Breaking Bad moments. We’ve rounded up a selection of just a few of the most memorable moments. Let’s hope 2015 is just as eventful!

Name change

We celebrated 20 years since we changed our name
from The Spastics Society to Scope, with a Parliamentary reception. We also looked at how life has changed for disabled people in that time.

The extra costs of disability

The Price is Wrong game show bannerCan an adapted BMX for a disabled child really cost four times the amount of the average child’s bike? Well yes, it can – and that kind of shocking fact is why you all got so involved with our Price is Wrong campaign and 550 challenge, to raise awareness of the extra costs that disabled people and their families face for everyday items.

Top films

Man bending over to talk to a wheelchair userOur End the Awkward adverts featuring Alex Brooker got almost 10 million views! They helped us to raise awareness of the fact that 2/3 people feel awkward when talking to a disabled person, mostly because they don’t want to offend or are scared of coming across as patronising. But we can all get over it!

Disabled model taking off his clothes in Scope charity shopThis year, our Strip for Scope film shocked everyone with a cheeky play on the sexy Levi’s Launderette advert, featuring disabled model, Jack Eyers. It was our most successful stock campaign –  we received over 1.2 million donated items to our shops.

We also created a film featuring disabled people talking about what the social model of disability means to them, the confidence and liberation it gives them – and how it can encourage everyone to think differently about what an inclusive society really looks like.

Face 2 Face befrienders

Two parents talking in a kitchen over a cup of teaWe were delighted to open new Face 2 Face befriending services in Oxford, Coventry, Lewisham, and three London locations – Islington, Waltham Forest and Redbridge, and Newham and Tower Hamlets. It means loads more parents with disabled children can get the vital emotional support they need, so they don’t feel like they have to cope alone.

Support and information

Our helpline staff have expanded on their lead roles in specialist areas, so they can give more thorough advice to people who need it, and share their knowledge within the team. The areas cover cerebral palsy, social care, welfare benefits, finance and housing, disability equipment and provision, early years, employment, and special educational needs. We also launched a new online community to reach even more people.

Get on your bike

Not only did over 4,000 people take up an events challenge for Scope this year, but we were thrilled to find out that we’ll be the official charity partner of the Prudential RideLondon–Surrey 100 for 2015. It’s worth a whopping £315,000 to Scope and means we have over 600 places for Scope participants.

New friendsRJ Mitte posing for a photo with a young disabled girl in wheelchair

And last but not least, we were very chuffed to welcome RJ Mitte, aka Walt Junior from the hit US drama Breaking Bad to Scope. He has cerebral palsy, but he’s never let it hold him back. He spoke to some young disabled people who are currently on our employment course, First Impressions, First Experiences, to tell them how he started his career.

What have we missed? If you’re part of Scope – what have been the highlights of your year?

10 Christmas present tips for parents and carers

The festive season can be a stressful time. Our online community has hundreds of practical tips to help you this season – from dealing with extended family to having days out.

Here are some of our favourite tips from the community for buying, wrapping and giving presents this Christmas:

1. Have a whip round

Friends and family never seem to know what to get George for Christmas and what they do give him nearly always ends up getting
broken or ignored. So this year I’ve suggested they contribute towards buying him a tablet, which he will definitely use. I think they’re quite relieved not to have the stress of choosing something for him.

2. Sparkly Christmas paper

For visually impaired children or those with a sensory impairment,
buy lots of sparkly Christmas wrapping paper as it’s very good for
catching and holding their visual attention. Gold, in particular, or anything with a rainbow/prism effect seems to work well.

3. A few of my favourite things

Wrap up some old favourite toys as Christmas presents if your child is not keen on opening presents as they have new and unfamiliar things in them. You can secretly hide some favourite things in the weeks leading up to Christmas – sometimes unwrapping something familiar is very reassuring!

4. Sometimes the simple things are the best

A couple of years ago we bought Reece helium balloons, and I think we spent about a tenner – and that was what he played with all day! Whereas everything else we got him, he didn’t want any of it!

5. Play with wrapping paper

Give wrapping paper to play with ahead of Christmas, cut, tear… so your child gets comfortable with the noise and look of it. Choose less
‘visually noisy’ paper and avoid patterns that can produce sensory
difficulties to your child.

disabled-girl-given-present6. Ready to go

When we give our daughter a gift, we make sure all packaging is removed, batteries are in, and it is set up ready to use as soon as she’s unwrapped it. For someone with limited attention and suspicion of new things it can make the difference between acceptance and rejection.

7. Spread out the presents

Don’t feel that all the presents have to be opened on Christmas morning in the traditional way. Our son would get so overwhelmed he couldn’t cope so it was much easier to allow him a few gifts at a time throughout Christmas Day and Boxing Day. He opened them all in the end without any tantrums and was much calmer and happier, meaning we all had a far more enjoyable time!

8. Design your own wrapping paper

Get your family to design wrapping paper. Simply buy lots of plain brown paper and allow them to have fun with paints in seasonal
colours.

Parents-with-disabled-son-unwrapping-Christmas-presents-half-size9. Opening cards and presents

My son has trouble with fine motor skills so I ‘doctor’ his cards and presents to allow him to open them easily. Makes for a much happier time for all and gives him a sense of satisfaction that he can complete tasks!

10. Don’t forget the giving

Help and encourage the person you are caring for to give gifts. This provides an excellent opportunity to work on social skills like thinking of other people, other people’s needs and interests and being kind and helpful. I support my daughter to make gifts for her family and friends. She also looks forward to actually giving out the presents as well!

Got your own tips to share? Share them on the community or let us know in the comments below.

(Photo credit: Katy Warner)

Reducing extra costs: our projects

In honour of International Day of People with Disabilities, the last Foresight and Innovation blog focused on how technology can benefit disabled people. We had some great responses to this theme and some of our students at Scope’s Beaumont FE college in Lancaster shared their thoughts on what difference technology has made to their lives.  This week, building on this theme, we are looking at products and services more generally and are asking what factors are most important to disabled people and their families when selecting a product, service or brand?

One of Scope’s priorities and themes is financial well-being. Our report Priced Out has revealed that disabled people spend £550 per month more on average on day to day items relating to their disability which is a big issue for disabled people, and so we have established an independent Extra Costs Commission to investigate the causes of these costs and identify effective ways to reduce them.

What are we doing?

Here in the Innovation Unit the problem of disability related costs has captured our imagination and we’ve set up ‘Project Thrifty’ to explore ways that Scope might practically help reduce these extra costs, perhaps by providing opportunities to people share their tips for lower cost alternatives through our digital community, brokering discounts on popular products, or potentially negotiating bulk purchasing opportunities.

We have also been developing a relationship with IKEA to see how their existing low cost homewares range could better meet disabled people’s needs. We had a great response to our survey, and initial research shows that some parents of disabled children are already using IKEA products in interesting ways. One mum on the Scope forum told us she has adapted an IKEA plant stand on wheels for use as a feeding pump holder for her child. It’s a fraction of the cost of the hospital version, and looks much nicer!

A few weeks ago we held a focus group with parents of disabled children, in the IKEA store in Wembley, North London. Within five minutes the group were talking about sawing the legs off children’s beds, adapting inflatable changing mats for use as play mats, and by the end they’d practically designed a whole new system for ensuring plates and cups don’t get knocked off the dinner table! Last week we held a focus group with adults and older disabled people who were equally creative in thinking about how homewares could be improved to better meet their needs. One of our favourites was an idea to create pull out surfaces at different levels in the kitchen to make it easier for wheelchair users to prepare food and rest hot pans or plates while they moved around the kitchen. The energy and creativity was astonishing and we have some great insight to share with IKEA when we meet them again this week.

Get in touch!

We’d love to hear your own views and experiences, to help us find ways to reduce the cost of living for disabled people and their families. In particular we’d like to hear about whether or not you use the internet to shop online, and what your thoughts are around this area.

Have a look at our questions about your experience of online shopping on our forum, and share your stories with us.

Q&A with Viktoria Modesta

On Sunday night, Viktoria’s promo video, Prototype, premiered to millions of people during one of the ad breaks of the X Factor final. We asked Viktoria about the project:

How are you feeling after the launch of your single Prototype? What reactions have you had?

So far the reactions have been almost all very positive. I have been lucky enough to accumulate people that follow my work and understand it. So far it has been very rewarding.

You have some incredible prosthetic legs – which is your favourite?

My Favourite is definitely the spike. It’s another level. It’s conceptual and something that hasn’t been done before. It’s an idea from a dream I had so it’s personal.

Do you think you get treated differently as a disabled person?

People react to you according to your attitude about yourself. A confident, genuine personality, with a positive outlook, doesn’t draw that much negative treatment, whether you are disabled or not. I also feel very strongly that I do not represent a large portion of the disabled community; I would never claim to be doing that.

Can you tell us about any ‘knock backs’ you’ve had in the past from the music industry? How did they make you feel?

I would like to think that the knock backs I’ve had were due to mixed things like wrong timing, wrong material. I don’t think I haven’t reached ultimate success yet because of my leg alone. In fact I think it’s very far from the truth. My values are that to be good at something you need to compete against every player regardless of details such as artificial body parts. I don’t expect charity or special treatment I would simply like to play on equal terms.

What has driven you to succeed?

Initially it was about survival and escape from Latvia and its soviet repression. Later in London it was about looking for a tribe to explore myself. When I was young, I spent a large amount of time in seclusion having treatment. So when I came to London I was like a kid in a sweetshop. I wanted to try everything – every fashion, every kind of movement. The turning point was my realisation that I needed to drastically improve my health, to be the person I was starting to form. When I eventually had an operation to amputate my leg below-the-knee things started to become clearer. It served my health and my life to the standard I expected. The last seven years have been the most magical, sometimes like a movie with crazy ups and downs. Now that my health worries are over, I am comfortable in my own skin. Recent support from amazing people like Channel 4 has eliminated any remaining insecurities I might have had from childhood. I am inspired to live a happy and passionate life where I can collaborate with people and contribute something back.

Which artists inspire you?

I’m an 80/90’s child. My first two records were Prodigy and 2PAC. It’s when I came to London in 1999 that my artistic influences really began – it’s a mixture of club characters, eccentric friends and performance artist. Creatively I never feel obsessed with one person but I really enjoy artists that mix it up with media and visuals. I think if you going to experience a show or a song you need the correct imagery to touch all your senses.

What advice would you give to other disabled musicians trying to break through?

Don’t expect things to come easy but also don’t feel like the world is against you. If you are passionate there are so many lovely people out there to help you.

You will inspire many people – what kind of role model do you want to be?

If anyone is looking at me in that way, I would like them to take away the importance of being true to yourself and not my specific actions because they were tailored for my life. I would like people to interpret my attitudes and apply however fits them.

The Disability Factor

What difference did the Viktoria Modesta’s music video make? Did it change attitudes? Did it increase opportunities for more disabled musicians?

Here’s what you had to say:

A million percent yes!

“About time we had some publicity in that world, you go girl!”

“This is absolutely brilliant! Disability should definitely be represented more in the media, it’s about time so well done Viktoria! x” – chellem90

“The music video won’t just benefit those disabled, but everyone, helping us to see how powerful we are as a human race, with the ability to achieve what we want in life.” – Soph

“About time too! Absolutely awesome. Love it. X” – Jenny

“Fab fab fab” – Margaret

I didn’t love it…

“Rather odd, not quite sure about it” – Anita

“…From what I have heard here, Viktoria is a young lady with an excellent voice, and I wish her well in her ambition.
I would just prefer that her publicity concentrated on her singing talents. Concentrating on, or indeed even mentioning, her disability is shallow reporting, and is not conducive to promoting inclusivity or acceptance…” – Geoff

“I personally didn’t like the song, but each to their own. It certainly illustrates well that a disability is not a barrier.” – Harry

It’s a “no” from me

“All this ‘not represented’ clap trap does more harm than good. Nobody should queue jump …! P.S. I speak as a disabled lady!”  – Mal

Tweet us or share your thoughts below.

Where are the disabled pop stars?

This weekend is the X Factor final – a night millions of us have been looking forward to.

But this year’s final comes with an exciting twist! Channel 4 is hijacking the occasion to launch Viktoria Modesta, a disabled pop artist.

On Sunday night, Viktoria’s promo video, Prototype, premiers to millions of people during one of the ad breaks of the X Factor final.
It’s rare to see a disabled musician singing to millions of people on one of TV’s biggest nights of the year – but Viktoria is planning to change that by bringing the disability factor to the masses.

(Warning: video contains adult themes)

Viktoria wears a prosthetic leg as the result of a long term health condition. At the age of 20, she took the radical decision to undergo a below-the-knee amputation to improve her mobility.

She views her amputeeism as empowering and part of her artistic expression. She believes it can thrill and influence her work and is not something which demands sympathy.

Viktoria famously performed at the 2012 Paralympics closing ceremony but has faced many challenges breaking into the music industry, due to the fact she is an amputee.

The singer wants to use the launch of her promo video as a platform to challenge attitudes about disabled people and shine a light on the stigma that many people like her face when trying to make it in the music business.

Earlier this year, Scope launched End the Awkward, a campaign which highlighted that many British people feel awkward about disability.

Scope research shows that 9 in 10 disabled people believe that more disabled people in the media would improve attitudes to disability – highlighting the importance of increased exposure of disabled people in the creative industries, including the music business.

What do you think of Viktoria’s new video?  Should the music industry be doing more to represent disabled people? 

Tweet us or share your thoughts below.

Colour blindness, on top of everything else! What next?

Guest post from Kathryn Albany-Ward, Founder, Colour Blind Awareness.

Just over five years ago we decided to move our then seven-year-old son to a new school where he would be able to play sport every day. He is a very sporty child and was looking forward to it but within a week he was no longer keen to go to school.

Nothing strange about that you say – plenty of children would get cold feet in a new school. But the unusual thing was his reason – he said he couldn’t see who was in his team for games. This was unexpected! Even more so because his kit included a reversible rugby top – olive green on one side and maroon on the other. In-depth quizzing revealed an astonishing fact – our son couldn’t see the difference between the two colours!

Here’s why.

rugby shirts
Normal colour vision

 

Rugby shirts seen with deuteranopia
Deuteranopia

I didn’t initially consider these colours to be red and green so colour blindness wasn’t on my radar. Only after other incidents dragged themselves up from the depths of my subconscious, such as the time he couldn’t tell the difference between lilac and sky blue fabric conditioner in the supermarket and the trip to the fruit farm where he picked only unripe strawberries, did I finally click that he might be colour blind. Wow, he managed to learn all his colours without us, his nursery school or four primary school teachers ever having a clue he couldn’t actually see them. How did he do that?

It turns out my son has a severe colour vision deficiency (CVD) and will never be able to see some colours. Here’s what he sees:

Pencils
Normal vision

 

Pencils seen with deuteranopia
Deuteranopia

Frustratingly his new school had no idea how to support him and I discovered that not only was there no meaningful information on the internet then, but also that colour blindness is not considered to be a Special Educational Need so there is no official guidance for teachers. Perplexingly, teachers are not trained in how to support colour blind pupils, even though 1 in 12 boys (and 1 in 200 girls) are affected – that’s one in every classroom! I found this shocking. Within a week I realised that my son was at a definite disadvantage, not just in the classroom but in everyday situations, so I set about raising awareness of colour blindness myself.

Having set up the Colour Blind Awareness website to help other parents and to provide information for schools, it took me another couple of years to realise the plight of children with CVD who also have other SENs to contend with.

I was suddenly struck by the idea of a bright non-verbal child, perhaps with severe cerebral palsy, trapped and unable to tell their carers that he can’t tell the difference between the red and green corners of his simple encoding board. I was horrified at that thought and immediately contacted Scope.  I am delighted to say that this guidance on CVD is now available on the Scope website.

Please contact Colour Blind Awareness if you have any queries and we will do our utmost to support you.

“What makes me frustrated? People not listening to me” – John’s story

I recently shared Elliot’s story about moving into supported living. I was lucky to meet some people who use Scope’s community support service recently – here is John’s story.

The night before John and I met, he hosted his 50th birthday party in a local social club. More than 100 people came, from all parts of his life – friends, people he’d met while volunteering, support workers, even his fitness instructor.John in a coffee shop near his home

John lives in a supported living house run by Scope in Hereford, and has chosen to share with two others rather than live alone. He has cerebral palsy, uses an electric wheelchair and has learning difficulties.

Becoming more independent

I met him, along with Lottie, who manages Scope’s service in Hereford, in the café of a theatre near his home. John arrives dead on time, unsupported and under his own steam. When we’re settled, Lottie reminds him that this wasn’t always the case.

“We worked together for about two years, learning how to go independently in and out of town. We’d go into town together – I used to sit in a coffee shop in the centre of town, and you used to go off and cross the road to the newsagents and then come back when you’d bought whatever you needed to buy”.

“We did that for 12 months – you’d have different tasks to do, going into WH Smiths or the bank, and things like that.”

“[Now] I get it all by myself,” adds John.

“You do a lot of things yourself now. Whereas if you go back 10 years, you would have probably spent about an hour a day on your own, and that was only at home, never out. You’ve learnt these skills.”

John and Lottie have worked together for 20 years, and tJohn in a coffee shop near his homehey have a strong mutual understanding. Lottie encourages John in the conversation as talking is quite difficult for John, but he listens and often adds his own thoughts.

Leaving residential care

As a young man, John lived in a large care home for disabled people. It had more than 60 beds, and was out in the countryside miles from the nearest town. John had little control over his day-to-day life and most decisions were made for him, from what to eat to what time to go to bed.

“[It was] horrible. You couldn’t do nothing. There was no town to go into. You’d have to ask the staff to take us out in the van,” he says.

John lived there until his mid twenties, when he moved to a house run by Scope’s community support service. He later became a tenant in the house, which means he can change his care provider if he chooses without having to move out. He pays for his team of support workers out of his personal budget, signing the cheques himself.

“I like to choose”

He is involved in all kinds of activities – from gardening at a local college to wheelchair football, to a music club where he volunteers to collect members’ subscriptions and take the money to the bank. During our conversation, at least half a dozen people stop to say hello to him.

“[In the future I’d like to] do more, like I am now,” he says.

Towards the end of our talk, Lottie asks John what makes him frustrated. “People not listening to me,” he says. “I like to choose. My own food. Be treated normally.

“I do things by myself, but there’s someone there if I need them.”

Find out more about personalised support from Scope, both at home and in the community.

What does the Autumn Financial Statement mean for disabled people?

Wednesday was International Day of People with Disabilities. By coincidence, it was also the day of the Autumn Financial Statement. Although the Chancellor’s speech and the accompanying documents only addressed disability explicitly a handful of times, nonetheless his policies will affect disabled people.

Prior to yesterday’s announcements Scope called on the Chancellor to:

  • Link and match investment in the NHS to investment in social care.
  • Invest in Access to Work and specialist employment support to enable more disabled people to enter and sustain employment.
  • Protect the value of extra cost payments.

So how did the statement match up to what we asked for?

1. Linking health and social care

The biggest announcement, trailed heavily before the speech, was a further £2bn investment in the NHS.

But it should be clear that without greater investment in this country’s social care this will remain a false economy. Social care, for both older and disabled people is in crisis. Unfortunately, as Scope’s Chief Executive and Chair of the Care and Support Alliance, Richard Hawkes, stated – ‘care was conspicuous by its absence in the Autumn Statement.’

A little less concrete than a budget promise, but still welcome, was the commitment to continue to integrate health and social care locally. Tucked away in the statement was the promise to give councils and CCGs more information about funding they will receive in future years so they can plan together. A slightly technical point yes, and not enough to counterbalance years of underfunding, but this has the potential to drive a stronger focus on supporting working-age disabled people to live as independently as possible.

Other good news was the announcements made concerning carers. These are:

  • The Carer’s Allowance earnings limit will increase in April 2015 from £102 to £110 per week
  • The Government will extend the £2,000 annual National Insurance contributions Employment Allowance to those households that employ care and support workers.
  • Care workers will be exempted from the impacts of removing the £8,500 threshold below which employees do not pay Income Tax on benefits in kind.

2. Employment support

Unfortunately no announcement regarding Access to Work was made yesterday, nor any significant changes to the way in which employment services for disabled people operate.

However, the decision that an additional £3m will be made available to expand existing mental health and employment pilots is a really positive step. It is now important that the learning from these pilots are effectively captured and applied to employment services as a whole.

3. Extra costs

Osborne announced that Disability Living Allowance (DLA) and Personal Independent Payments (PIP) would be protected in any future freeze of working age benefits. Whilst we recognise that the freeze will adversely affect many disabled people in the ESA WRAG group and on JSA, protecting DLA/PIP is an important part of ensuring disabled people can meet the extra costs they face.

Scope warmly welcomed this move at the time, and we were pleased when in this was confirmed in a separate announcement made by the Minister for Pensions Steve Web.

 

Making the most of technology

Today is UN International Day of Persons with Disabilities. The theme for this year is the ‘Promise of Technology’ so we thought this would be the perfect opportunity to talk about some of our favourite tech innovations and update you on our work around technology.

The digital revolution has already had a huge impact on our lives – ever stopped to think how you managed before you had that life-changing tech device, app or website? Despite the rapid changes we have seen over the last decade, many would argue that this is only the tip of the iceberg in terms of how technology will change the way we live. Our report looking at the future of care published earlier this year, featured robots, monitoring devices that can help you manage health and well-being, and apps that can manage a remote care network. They all have big implications for the way we manage care. Although there will always be some people who are a little behind the curve in adopting new technology, its potential to make the world more accessible, convenient and easier to navigate is undeniable.

The rapid pace of technology development can feel a bit overwhelming, but it also means that new products can be developed faster and more cost effectively than ever before. For example, we are excited by the growing range of home automation products that allow you to control household devices like lights, heating, appliances and potentially any household object using a smart phone or tablet. These have the potential to make it easier for disabled people to be independent at home and are a fraction of the costs of existing specialist domestic technology systems.

What are we doing?

Here at Scope we are particularly interested in how disabled people and their families can make the best possible use of the technology that’s out there to make day to day life easier and more affordable. We’ve commissioned some research looking at how disabled people currently use technology and how they would like to be able to use it in the future. We have also been looking into what support is currently available to disabled people to help them find, use and buy technology. We are particularly keen to explore how we might enable and encourage disabled people and technology experts to share their experiences and knowledge so more people can find out about useful technology products and get the most out of them.

One example of a product we’d love more people to know about is the Giraffe Reader. This is an innovative and low-cost adaptation for use with the iPhone which allows people with visual impairments to read paper documents using the Optical Character Recognition. It’s lightweight, easy to carry, is sold for £32 and can be used instead of a piece of specialist equipment that usually costs between £500 and £2000!

We’d love to hear from you…

We want more people to share their opinions on what tech products are being used and what is out there. What do you like/ hate/ how do you find out about new things and what is missing from the market at the moment? With this in mind, if you are a disabled person or you help support a disabled person, then we’d love to know about your experience. Visit our forum to talk about your favourite piece of technology (app, website, device…), and we can start to share your tech wisdom with others.

We will continue to update this blog with progress and information on more of our projects, as well as with our insights on all things innovation; ideas, ventures and trends that we find. We look forward to hearing from you as we go!

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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