Groups offering emotional and practical support

This is the first of a series of occasional blogs from the Scope Helpline so we would welcome any suggestions as to what info you would find useful, what you want to know about the Helpline and Scope.

Although we are the national helpline for Scope and the first point of contact for most enquiries, we are quite small. We have two new staff starting in September which will take us up to seven staff and we deal with an average of 1,200 phone calls and 400 email/website enquiries per month.

The Helpline is central to information production within Scope so if there is a disability-related issue that you feel we should have further information on, please let us know. We cannot promise but all sensible suggestions will be considered.

We have noticed an increase in the number of people looking for emotional and practical support from people in similar situations. It’s not just adults – many disabled teenagers who are struggling to come to terms with their impairment, feel that they could benefit from a mentoring or befriending service and being in touch with disabled role models. At Scope we have a number of exciting peer support projects that people can get involved with:

  • For parents of disabled children we run a network of support groups called Face 2 Face.
  • Young disabled people between 10 and 18 years old can join the Trendsetter’s group.
  • Over 50s in Wakefield can join the Our Generation service that offers one-to-one support for disabled people and people with long-term health conditions.
  • Everyone can get involved in the Scope Forum and talk to others online.

We’d love to hear what other peer support projects you would recommend, and let us know what areas you would like to see us talk about using the comments section below.

The bedroom tax, ATOS and social care at the Labour Party conference

Guest post from Megan Cleaver, Parliamentary Officer at Scope.

It was the second leg of Scope’s conference tour last weekend when the Labour Party headed to Brighton for their annual gathering.

It was an important week for Labour disability policy as the Party published their Making Rights a Reality (PDF) report which included two key announcements.

After a long running campaign against the ‘bedroom tax’, a measure which will cost over 400,000 disabled people between £624 and £1144 per year, Labour Leader Ed Miliband promised delegates that they would scrap the policy if they got into power in 2015. This is a welcome move as for many disabled people, a spare bedroom is not a luxury, but an essential- needed for specialist equipment, or so their severely disabled child can sleep separately from their siblings.

And there was more good news from Shadow Welfare Secretary Liam Byrne who committed to ending the Government’s contract with ATOS, who currently undertake the Work Capability Assessment (WCA). But while there are countless horror stories around the behaviour of ATOS assessors which has provoked the ire of many disabled people, the blame cannot be pinned squarely on them for the failings of the WCA.

As we said to Liam Byrne, Shadow Disability Minister Anne McGuire and Shadow Employment Minister Stephen Timms at conference, if Labour is seriously committed to getting disabled people into work, and not just off benefits, there needs to be a complete rethink of the whole assessment process to ensure it addresses the many barriers disabled people face when it comes to finding a job. Just handing a P45 to ATOS is not enough.

Arguably the most transformational policy announcement to be made at conference was Andy Burnham’s vision for ‘Whole Person Care’, paving the way for the full integration of the health and social care systems with one service (with one budget) coordinating a person’s physical, mental and social needs. This vision is an exciting prospect for disabled people who are facing their own ‘social care crisis’, often falling through the cracks between the NHS and social care system.

In his leader’s speech, Ed Miliband likened the scale of the ambition of ‘Whole Person Care’ to that of the creation of the NHS is 1948. But like much of the debate on this issue, he framed the reforms to social care purely as a means of solving the care crisis for older people. But when a third of social care users are working-aged disabled people, it is vital that the care system works for them.

As Paralympian Sophie Christiansen highlighted in her speech at the Women and Equalities discussion panel (where she received the first standing ovation at Labour Conference), getting the right social care was vital to her being able to live independently and train to become a gold medal winning equestrian.

Social care is the cornerstone of independence for disabled people. It gives them the vital support which enables them get up, get washed, get dressed so they can go to work, get involved in their local community, and reach their potential. And this is the message we will take to the Conservative Party as the Scope conference tour makes its final stop in Manchester.

Read our previous blog from the Lib Dem conference.

Preparing teachers with disabled children in their classrooms

Guest post from Tracie Linehan, an educational specialist at Scope.

Man and disabled student using a computer smilingAs teachers, we’ve all experienced the challenges of including each pupil, with different abilities, in our classroom activities. There are added pressures to consider if a child is disabled or has special educational needs (SEN). It’s rare for teachers to have the expertise about each different impairment or condition and this means finding ways to include them can be tricky. Teachers and teaching assistants often feel under-prepared in dealing with the challenges posed by disabled students or those with special educational needs (SEN).

According to the Department for Education, there are more than 1.6 million children with special educational needs in schools, 779,665 in mainstream primary education alone. Of these, 226,125* have a formal ‘statement’, which outlines an individual child’s needs and details how they should be supported.

Until now, there’s been little in the way of practical guidance for teachers on how they can go about supporting disabled children and pupils with SEN in their classes. That’s why Scope, funded by the Department for Education, developed a new online resource for teachers.

A toolkit to bridge the gap

Learning together is our new online toolkit for teachers and special educational needs co-ordinators (Sencos). It provides practical tips and techniques that have been proven to work in a classroom environment, and includes:

The information covers a wide range of conditions and impairments including autism spectrum disordersphysicalvisual and hearing impairments, dyslexia and communication impairments.

We developed Learning together with the help of an expert panel of teachers and specialists, and we also tested it among over 25 professionals, including Sencos, teachers, speech and language therapists and SEN teachers.

Feedback so far

We launched Learning together just before the summer holidays and we’ve had some great feedback:

Barbara Mazliah, a deputy head and Senco at Moriah Primary School in Harrow, said:
“This toolkit is an incredibly thorough and easy-to-use website for non-specialists. I think it will be a very useful resource for any Senco and class teacher to have at their fingertips. We’re all focused on the assessment of children’s attainment and progress and this will help class teachers monitor SEN children more accurately in the future. “

and on Twitter:

Join us in developing best practice for inclusive education

We are continuing to develop the Learning together toolkit and to add new content. This is where you come in! If you would like to submit classroom resources, lesson plans, techniques or tips for including pupils, please email learningtogether@scope.org.uk.

Or just let us know what you think, by sending us your feedback online!

I hope you find it a useful resource.

The long fight…

The game changers
Sue-MarshSue Marsh is the author of the blog, Diary of a Benefit Scrounger. A sufferer of severe Crohn’s Disease, Sue campaigns to raise awareness of issues surrounding disability and long-term illness.

For as long as I can remember, sick and disabled people have campaigned hard for equality and inclusion. For the right to work, to live independently, to access transport and public spaces just like anyone might.

We’ve made great progress over the years, but of course there will always be more to do. Sick or disabled people are still less likely to be in work than those without disabilities. We will find that many places cannot accommodate us and all too often, we are still excluded from the choices that allow us control over our own lives.

However, in recent years something much more fundamental has become so important, it might seem that these very basic battles have been abandoned. Of course they haven’t, but before we can fight for true equality, we first need security.

Every human being has the right to security, and that right is enshrined in law. We are entitled to the security of home, family and dignity. We have the right to expect that we can afford to eat and to warm our homes. It is an inescapable truth that many – though of course not all – disabled people need a little help to protect that security. We might need help to get out and about or to dress ourselves. We might need help with personal care or to access transport. If our illness or disability leaves us unable to work or at least to work reliably enough to manage independently, we might need social security to supplement what we can do.

For some time now, that social security has been under threat. Up and down the country, sick and disabled people have seen the support they rely on cut back. They might have lost benefits that helped them to feel secure and to live a life similar to other citizens. They might have lost a mobility car that meant they were able to work or a carer they relied on.

Before we can do anything else, we must be able to dress and clean ourselves, eat and get about. When these most basic of securities are under threat, nothing is more important than making sure they are restored.

Many of us may have thought those battles were won, that we had moved on. Sadly, I believe we now find ourselves forced to fight them all over again.

Only by sharing our own stories, by sharing our lives, can we explain, once again, why security others take for granted is so important to us and why, in many cases, we need help to protect it. It’s frustrating and sometimes perhaps a little insulting, but unless the most fundamental building blocks of life and security are in place, for many, questions of wider access and inclusion are in danger of becoming academic.

Welfare policy undermines disability equality

The game changers

Jane-Young

Jane Young is a campaigner and consultant based in South West London. She is currently campaigning and co-ordinating the ‘We are Spartacus‘ grassroots movement of sick and disabled people.

In recent weeks some commentators have started to highlight the way in which, since 2010, as a direct result of the Government’s unfair and inept welfare reform programme, disability campaigning has become overly focused on the benefits system. A clear example of some of the problems this has created is the debate around Employment and Support Allowance, the Work Capability Assessment and the controversial issue of “fitness for work”.

Sick and disabled people face complex barriers to participation and employment but, in seeking to expose the lunacy of the work capability assessment, much of the media reporting has been guilty of playing right into the Government’s hands. Take headlines that read something like: “Double [lower limb] amputee told he’s fit for work” (shock, horror!). This kind of headline, whilst entirely understandable, misses the point and undermines the inclusion of disabled people. Many double amputees are able to work but simply finding such a person “fit for work” drives them further from the workplace.

A double amputee who has always worked in an occupation that necessitates, for example, the ability to walk without restriction, faces enormous barriers to employment. These barriers include those relating to their impairment – the need to adapt to the use of prostheses and/or a wheelchair, to manage phantom limb pain and stump pain – as well as non-impairment related barriers, including the need to acquire the skills needed for a sedentary job and to overcome the discrimination severely disabled people face in today’s labour market – where employers can choose, from hundreds of applications, an applicant who has no additional support needs. The Government’s Work Programme has been shown to be almost entirely incapable of providing effective support to enable disabled people to face and overcome any of these barriers, whether impairment-related or otherwise.

Most disabled people want to work, but an approach focused on compulsion and sanctions, confining the issues to the benefits system, is doomed to fail. What will enable disabled people to work, if their health allows, is effective, holistic support combined with equality laws that actually make a difference to the way employers behave. The issues go beyond the benefits system; the real question is “how does our society view sick and disabled people?”

Making technology work for disabled people

New technologies aren’t always up to scratch for disabled people.

Mainstream devices can be highly adaptable but don’t do a great job of meeting disabled people’s needs. Technology designed especially for disabled people can be very good at meeting needs, but is often expensive and doesn’t do everything a mainstream device can.

So as part of BT’s Connected Society programme Scope, BT and the RCA’s Helen Hamlyn Centre for Inclusive Design explored how we can start to close this gap between mainstream and disability-specific technology.

Our report Enabling Technology (PDF document) found that the key to creating enabling technology is, wherever possible, to support disabled people to create their own solutions.

This means focusing on the person, not the system  – on adaptability and flexibility rather than rigid codes and standards.

It can be a difficult shift to make for manufacturers and service providers, but creating ways to bring disabled people ‘closer’ to technology can have real benefits, bringing down costs and increasing independence.

Here’s three key ways we think this can happen:

1. Adapt mainstream technology

By far the best way to use technology to support disabled people to live more independently is to adapt already existing mainstream devices.

Sheni using the pop-up readerAn example is the ‘Pop-up Reader’, an innovative prototype inspired by Sheni – a visually impaired singer who needed a better way to read written lyrics.

Sheni already had a smartphone, so the team built a cheap, easy-to-make stand to hold her phone – and the page – in the right place. Crucially, it also folds up and fits into her handbag.

Crucially, this simple, easy-to-make stand costs a few pounds to make – compared with between £500 and £2000 for a specially made device.

Find out more about the Pop-up Reader, or even try making your own.

2. Build easy-to-tailor products

To make technology work for every disabled person, it makes sense to tailor devices as much as possible to suit individuals. Building this approach into product design is often the best way to achieve this.

To show what we mean by this, we created a new approach to computer hardware called ‘Tailored Touch’.

Using cardboard, a cheap circuit board and paint that conducts electricity, Tailored Touch can be used to build a range of things like keyboards or a computer mouse.

Lyn, a musician from the Paraorchestra, had a number of challenges using her instrument through a touch screen device. She struggled to control the instrument accurately enough to play live with the rest of the orchestra.

So the project team worked with Lyn to build a new musical keyboard, using only cardboard, paint that conducts electricity, and a cheap circuit board. Christened the Lynstrument, this approach completely changed the way she plays live through her computer.

Lyn using the Lynstrument

This approach can also be used to enable anyone who struggles to use traditional interfaces – such as  a mouse or keyboard – to get online.

Learn more about ‘Tailored Touch’ and the Lynstrument, and make your own device.

3. Measure accessibility using timed task completion

Online services such as shopping or banking can be really helpful for disabled people – but they aren’t always fully accessible.

Although most sites now meet accessibility standards, our research found that some disabled people still struggle to use these services.

This is because there are so many different technologies disabled people use to go online  that it’s difficult to continue updating rigid codes and standards. This means that even if designers tick all the boxes, they may still end up with a website that isn’t completely accessible.

So our report argues that we need more responsive ways of measuring the accessibility of digital services, focusing on the person not the system.

One way to do this is to time how long it takes a disabled person to complete tasks online compared with non-disabled users of the same site. If it takes longer for a disabled person to finish a task, the site just isn’t accessible enough.

Our report sets out a clear philosophy for involving disabled people far more in the way technology is designed, used and evaluated by supporting disabled people to create their own solutions.

We’ll be doing more on the theme of technology over the coming months, so watch this space and get in touch if you want to find out more. We’d also love to see your videos and photos of building these ideas – so get in touch via Twitter or Facebook.

Disability, care and the living standards debate at the Lib Dem Conference

We want to get across two important things to politicians during this conference season. Our first chance came in Glasgow with the Lib Dems. The first was to make sure MPs are prepared for the Care Bill, set to enter Parliament in the near future. The second was to draw attention to the crisis in living standards that is facing disabled people.

One of the Lib Dem’s own themes for their conference (… accidently leaked to journalists) was ‘achievement in Government’, and it would be sensible for them to point in the direction of social care reform as an area that they have made a difference. The Care Minister, Norman Lamb MP, is a Liberal Democrat, as was his predecessor Paul Burstow MP.

Together they have pushed through the first ever single legislative framework for social care in the Care Bill. And for this they have received much praise. But Scope’s big concern with the Bill – and that of the Care and Support Alliance – is that too many disabled people will be locked out of receiving formal care by an eligibility threshold which is too high.

This point was made again and again to Norman Lamb in fringe meetings about social care. I ended up heading to events with the Minister on the panel for five straight hours on Sunday evening. At each and every event he was asked about the new national eligibility criteria and why this must not be set too high – as the Government currently intends.

Encouragingly – by 9pm – he recognised that ‘there is a debate about where the eligibility criteria should be set’, and it was another reminder that we need to keep up the pressure on the Government through the Britain Cares campaign.

It seems like the local pressure is increasing as well, with the Bradford Cares campaign also visible at the conference, most notably at a fringe event from the Association of Liberal Democrat Councillors.

The question of ‘living standards’ was also a key theme of the conference. Scope’s research with Demos shows that between 2010 and 2017, 3.7 million disabled people will have lost £28bn in social security. There were thought provoking fringe meetings from the Joseph Rowntree Foundation, Child Poverty Action Group, Resolution Foundation and Liberal Left.

It seemed to me that the idea that the next election will be one fought on ‘living standards’ is being accepted amongst Lib Dem MPs and members. There was certainly much discussion about what the next Lib Dem manifesto would include to push up living standards.

At one fringe meeting, Frances O’Grady of the TUC said, “it is expensive to be poor”. The same is true for disabled people who are disproportionately likely to be vulnerable from financial shocks. Scope will be making sure that throughout the rest of the conference season, disabled people are front and centre of the living standards debate.

The Art of Juggling

The game changers

Adam Askew

Adam Askew has worked in the campaigns and communications environment for the last 10 years. He started his career in youth engagement work and over the past 10 years has run national campaigns across Africa and Asia. More recently In the UK he has run The Robin Hood Tax campaign and has just stepped down as the communications chair for The Enough Food for Everyone IF campaign. His general approach to campaigning (and life) is brutal pragmatism, combined with sharp insight and simple easy to digest communication.

I was once asked, while interviewing, what the point of a campaigner is. Given my role as a global campaign manager at the time I felt it was a slightly loaded, but a nonetheless pertinent, question. Given the context of the interview and the fact I was on a recruiting panel I gave it some thought…. (Just to be clear, this candidate was unsuccessful in their application due to epic failure in many other areas!)

In my response I talked about the campaigner’s art of juggling. It is one of the most important skills in any campaign and one that is so often undervalued. The juggler has the ability to judge the situation, understand the personalities involved and know when and how to deploy which tactic at what time. This is fundamental to any campaigns success. The juggling part comes in because campaigning is often a complicated beast with lots of balls in the air at any one time; most of the balls tend to be policy oriented, but you have media ones, public facing one, digital ones, fundraising ones & political ones, and this involves a lot of folk. It is your job as the juggler to take that complexity, juggle the issues skillfully in order to help create a clear and concise campaign strategy or programme. You are often at the bottom of the campaign food chain; the juggler is the unsung hero playing a vital unseen role and in my view, the campaign can live or die because of them.

So as we come to the end of the IF campaign and the post mortem begins, I have begun once again to ask myself a number of these same questions.

The IF campaign, was a coalition of over 200 organisations (so a lot of balls), calling for an end to world hunger.  The campaign, backed by a list of incredible organisations, had all the hallmarks of an excellent coalition campaign. It had a clear goal. It had some big celebrity backers. It utilised the talents and skills of some of the best campaigning organisations out there and it deployed the best agency communication thinkers around.

It achieved some incredible things: Over £4 Billion pounds of new money saving nearly 2 million kids lives, which is an incredible achievement and worth all the effort alone. But there was more, the progress on tax avoidance and land grabbing (the things that keep people hungry) are also to be applauded.

The IF campaign did not get as much the public exposure as it wanted and at times it was unable to tell its own story simply enough, but 45K people in London’s Hyde park in June demanding action, calling for the possibility of IF was breath taking.

So how does this all link to the juggler? Well in this campaign we dropped a few balls and we probably tried to keep a few to many in the air at once, but the campaign created one hell of a circus and when all is said and done, the conclusion reaffirms my view that the juggler is still one of the most important roles of any campaign set up big or small.

The Enough Food for Everyone IF campaign showed what is possible when we join and juggle together and I am certain it will have saved lives. There is a part of me already looking forward to the next joint endeavour….

We’re creating an ambitious campaign and we want you to be part of it. Join Scope’s campaign community and become a game changer

Who benefits? We all do…

The game changers

WB logo
Tom Pollard is a Senior Policy and Campaigns Officer at Mind

I was very excited to hear about the new Game Changers community. Since my involvement in the Common Cause ‘action learning process’ last year (which looked at how we can use ‘values’ and ‘frames’ in campaigning), I’ve been really interested in the idea of campaigns that look at the bigger picture of what needs to happen in order to achieve the lasting change – in this case dramatically improving the lives of disabled people.

Organisations, like Mind and Scope, that represent particular groups of people have important work to do in addressing specific policies and issues where our supporters are experiencing difficulties. However, we also need to recognise that bigger factors, like media coverage and public attitudes, play a key role in influencing both how people we represent feel about themselves, and the decisions that are made about their lives by people in power.

Mind has helped to set up a new campaign in a similar vein, and I’m delighted that Scope are supporting this campaign. Who Benefits? is looking to change the debate about benefits – away from negative stereotypes about people who use benefits and towards real stories of real people with real problems, for whom support from benefits is a vital part of their life.

We know that there are many problems with benefits for ill and disabled people, but we also know that public attitudes, media coverage and political rhetoric are making it harder to get these issues resolved. If we can refocus the debate on the overwhelming majority of people who need support from benefits, then we hope we can reduce the stigma felt by many of these people and have a more constructive discussion about what needs to change.

It’s an ambitious goal, and it’s only going to work if huge numbers of people speak up about why they’ve needed support and what this support means to them. These are the voices that have been absent from the debate so far and they are the voices that need to be heard. Our new website will help you to do this, and if you haven’t needed support from benefits you can still express your support for the campaign.

Together, we can change the debate.