Category Archives: Inside Scope

“We have a feeling that our family’s future is bright”

Aslam and Sadia live in London with their four daughters. They struggled to get the support they needed for their daughter Kinza after she was diagnosed with cerebral palsy. She went through many health problems and it was a very stressful time for the family. Aslam and Sadia turned to Scope for support and it turned things around, making them feel less isolated and stronger as a family. In this film and blog, they talk about why support is essential for disabled children to get the best start in life.

As my daughter, Kinza, was growing, we saw that she was not developing like other children. When she was six months old, we took her to a specialist. They told us that some children have a tendency to develop later and to wait until she was 9 months old. We waited but she was still the same so the specialist referred her for some tests and we found out that she had cerebral palsy.

Dealing with the diagnosis

The diagnosis made us feel very depressed. Kinza was our first daughter and we had plans in our mind about what it would be like. We took her to many places and specialists to get their advice. What were the options? Is there anything we can do for her? So many questions. Nobody could make any guarantees. We just had to wait and see. My wife was worried and she still asks me sometimes “What is going to happen?”

As she was getting older, we were finding it difficult to handle. We asked for advice about what you can do for this type of condition. They all spoke about physical things, but no-one talked about her mental development.

As life went on, Kinza started having a lot of health problems. It was a very difficult time for us. We didn’t know what was going to happen next. So many things were going through our mind and we were really upset.

We got in touch with Scope because I was struggling

We were given a number for Scope and a few other organisations. We called everyone. We couldn’t find help from those organisations but we found help from Scope. It was a great experience. We discussed our problems and got some advice and we started to feel better. Before that, we were alone and nobody was helping.

Without Scope’s support, we don’t know what we would have done. We’d be struggling more and maybe getting worse. The emotional support that they have given us has been fantastic. We’re feeling much better compared to previous days and we have a lot more strength now.

Without Scope, we wouldn’t have achieved everything so far for Kinza, which is a lot. She’s in less pain now, she’s concentrating, she makes noises to communicate. She feels happy, she laughs.

A man and woman smile with their disabled daughter who is a wheelchair user

The future is looking bright

Hopefully, we will reach that point where Kinza will be totally independent. At this point, Kinza will be happy and we will be happy. After coming out of these difficult times, we have a feeling that our future, especially for our kids is bright, they will get good education and succeed in life.

The most important thing is that you never lose hope. If you have hope, then you can achieve everything. Don’t be isolated and try and find the support you need.

At Scope, we work to change society so that disabled people have the same opportunities as everyone else. There are 13 million disabled people in the UK today and life is still too hard for too many.

Our new strategy has been developed with disabled people and their families and sets out how we want to make this country a better place and drive positive, lasting change.

We’ll support parents of disabled children get the support they need, so that all children can succeed at school and get the education they want. We’ll work to make sure that disabled young people are supported as they move in to adult life, whatever they want to do.

Visit our website to find out more about our new strategy.

Let’s stop disabled people being labelled “unemployable”

My name is Jodi and I am an Employment Adviser at Scope. It’s my job to support disabled young people into employment.

Right now, disabled people are more than twice as likely to be unemployed than non-disabled people, regardless of the skills, experience and expertise they might have. It’s unjust and unfair. With donations like yours we are working to change that.

A lot of things can stand in the way of a disabled person getting on at work – from difficulty travelling to and from work, to confidence issues or a lack of experience and qualifications – up until now.

Thanks to donations of supporters like you, we can work with young disabled people to find the right job opportunity or apprenticeship, help them with CV writing and interview practice and also support them in their jobs once they’re employed.

It’s rewarding work and I love it. But it can also make me sad and angry.

Misunderstanding and prejudice

All too often, I see misunderstanding, prejudice and even bullying in the workplace and a tendency among employers to think of disabled people only in terms of what they can’t do.

It can be frustrating and demoralising for young people to be overlooked or labelled ‘unemployable’ – to feel like the pathway to greater independence and financial stability is getting narrower and narrower.

For a young person struggling with the whole idea of finding a job, having someone to help them navigate the pathway is really important.

Breaking down barriers

I work with disabled people to understand what unique and valuable skills they have to offer. This may involve a volunteering role to build up confidence and self-esteem. In other instances, something like time keeping skills or the right preparation for an interview can make all the difference.

Employment Advisor talking to a disabled customer
Jodi provides one-to-one support for disabled people looking for work, like Nusrat

For employers, having Scope on hand to provide ongoing support is incredibly useful. By helping them to understand and meet accessibility requirements, we quickly break down barriers.

But for wider change we need to do so much more. That’s why we are also working to influence government policy aimed at closing the disability employment gap, as well as running campaigns to educate the public and address common misconceptions about disabled people and what they can and can’t do.

With your help, we can continue to work with disabled people to ensure they have the same opportunities to find fulfilling work and become more independent – both personally and financially.

Thank you so much for your support, it means a lot to me personally to know you are with us. If you can, please make an extra donation today so we can do even more to support disabled people into work.

Today we launch our new five-year strategy – Everyday equality

Today marks the start of an important journey for Scope as we launch our new five-year strategy – Everyday equality.

We’re setting out a bold vision for how we can reach more people than ever and continue our mission of driving social change to ensure disabled people have the same opportunities as everyone else.

That’s because we know that life today is much harder for the 13 million disabled people in this country than it needs to be. Disabled people have told us the challenges they face are changing. So we’re changing to meet those challenges with them.

Our mission

Our mission is to achieve everyday equality with disabled people in Britain.

Everyday equality is about ensuring we all have the same opportunities in life. For us, it’s about ensuring that disabled people aren’t made to feel inferior, aren’t treated unfairly, aren’t overlooked because of their impairment or condition.

It’s about fairness, justice and rights – at home, at school, at work and in our communities.

Disabled people tell us that everyday equality can’t be achieved without a steady income, enough money to pay the bills and cope with life’s unexpected events. For many disabled people – although not all – everyday equality is about having a job.

For others it’s about feeling strong enough to cope with the hard times. It’s about knowing how to get support at times and in ways that are most convenient. It’s about finding people who are in the same boat, not feeling alone or isolated. It’s about being visible, being included and having a voice, going to school, feeling safe, making friends and enjoying life.

Our focus

We will focus our work in the areas disabled people have told us matter most, supporting them to:

  • Get the best start in life
  • Live the life they choose
  • Be financially secure

We will drive social change by influencing policy, attitudes and championing the rights of disabled consumers. We will continue to offer support, information and advice to disabled people and their families. And of course, disabled people will remain at the heart of everything we do. 

We want to campaign with everyone to change policies, laws and attitudes. We want to build a community of disabled people who support each other through life’s big moments and harness the power of digital technology to improve lives.

We’ll also continue to deliver direct services to disabled people and their families. The types of services we deliver will change but everything we do will advance our mission of securing equality for disabled people. We can only deliver this by reaching many more people. That’s why we have an ambition to directly reach more than two million people with our services by 2022.

This will only be possible with your support

Of course, all of this will only be possible with your continuing support. We know there’s a lot still to be done. We won’t stop until Britain is a country where disabled people can reach their potential and live the life they choose.

Visit our website to find out more about our new strategy and how you can get involved

Working with disabled people: it’s so simple to get it right

Today we publish ‘Working for all?’, our new research about experiences of employment support among disabled people with high support needs. Aidan is 27 and works in London. In this blog he talks about his experiences of accessing support and colleagues’ attitudes at work.

Like many people, I get up at 6am each morning and commute to London to do a long day’s work at a job I love and an organisation I’m proud to be a part of. The only difference is that I’m blind, having been born with a genetic condition that affects my retinas. I’ve experienced a lot as a disabled employee: the amazing and the truly awful. I want to share what I’ve learned and explore where in-work support goes wrong and, most importantly, how we can get it right.

Not all employers think flexibly

I have had experiences in work where my disability has been viewed as a problem. The simplest adjustments have been refused, despite many adjustments not being expensive or requiring a lot of effort to implement. I once asked a line manager if I could structure my tasks in a way that would enable me to get the most out of my Access to Work support worker on the days she was in. This was met with the dismissive retort that it wasn’t “a part-time role.”

In another job, it was virtually impossible to get the managers to commit to the highly practical job descriptions that Access to Work require. I was refused simple requests such as using an alternative to PowerPoint or recording meetings. As a consequence, I’d often be working at home until 11pm to catch up and require far more support than would otherwise have been necessary. I was even told that because I had help with minuting, “you don’t look like a leader. You don’t look in control.” The message was always the same: I was presenting them with problems, and that is all they were. It was one way or no way.

I can’t hide my disability and wouldn’t want to, but I’ve developed tricks for subtle positive advocacy. At interviews, I always ask a question about the practical day-to-day work involved with the role. It allows me to slip in that I’m considering whether I’d need to use certain bits of equipment, or seek some support from the Access to Work scheme. I use a question to give them a crash course in case they were hung up on the disability. I believe that, right from the start, disabled employees should have a strong partnership with the employer. We are, after all, experts in our own disabilities. We need to support our managers, who in turn must take into account our needs in order to get the most out of us.

Employers’ mindsets need to change

In my experience, there are many people willing to challenge themselves and learn more about disabled colleagues. In my current organisation, for example, describing slides in meetings and running through proposed events in advance, have all become standard practice.

Colleagues understand that a disabled person is a person first and foremost. Combining their adaptability, my skill in offering solutions, good will and a sense of humour on both sides, we just make it work. Indeed, the fact that I require help sometimes has brought me into contact with colleagues in many different departments and roles. What might be thought of as a weakness is actually an asset for building strong networks, knowledge about other areas of the organisation and relationships that enable us to work better.

I want to see us get to a point where, instead of persuading employers to take a chance on disabled talent, they would say, “Why ever wouldn’t you?” I believe that with disabled people increasingly willing to express themselves and talk about their experiences, more and more employers are going through that game-changing mindset shift. That’s a great thing, but we’ve still got many more battles to fight before we win the war!

Find out more about experiences of employment support amongst disabled people with high support needs. Read our new research report, Working for all?

Say hello to our £4000 jackpot winner, Liz!

Liz was the lucky winner of £4000, in our Christmas 2016 Jackpot Draw. Liz has been giving to Scope since the late 1990s, and started buying raffles in 2003. She tells us how she felt when she found out, and why she supports us by joining in with our raffles.

How did you feel when you found out you had won top prize?

I never thought I would win! My first reaction was that I wanted to give some of the money back to charity. I found out just after Christmas, and it was nice to have all my family there to tell them. Everyone was so surprised and excited!

What are you going to spend your winnings on?

I’m going to give some of the money back to Scope, and some to another charity, where a family friend works. We’re then going to split the rest of the money between my family. My daughter has recently become engaged, so the timing of this win was perfect.

What does Scope mean to you?

Scope seems to be a very worthwhile charity- I’ve been supporting Scope for a number of years. I used to be a teacher and I taught several disabled students, I once went on a trip with one girl who had cerebral palsy and she joined in with everything. I think it’s important for people to not be treated as different, and I think this is something Scope is really passionate about. I always liked to buy raffle tickets to support Scope, but I really never thought I’d win!

Would you like to win the top prize like Liz did? You’ve got to be in it to win it! Join our Spring Jackpot today for a chance to win £4000, whilst supporting our vital work with disabled people and their families.

Visit our new online technology hub – in partnership with AbilityNet

Technology is transforming the lives of disabled people. We are working with tech experts from AbilityNet to highlight some of the software and equipment that can make life easier, more productive and fun in our new technology section.

Adapting your computer

Sometimes your existing computer has accessibility features on your existing PC that you might not be aware of. Try My Computer My Way, a free, interactive tool developed by AbilityNet that makes any computer, tablet and smartphone easier to use.

Check out our keyboard shortcuts, too!

Computers and autism

People with autism spectrum disorders can use a variety of multimedia applications and programs to experience the world around them within clear and safe boundaries.

How tech can support people with learning difficulties

Find out about touchscreens, keyboard and mouse alternatives and software that can help people with learning difficulties to access computers.

Visual impairment apps and suppliers

For people who have difficulty seeing conventional displays, there are many useful apps and specialist suppliers in visual impairment products. Other options to accessing information online include magnification and screen-reading.

Voice recognition

If you think you have never used voice recognition, think again! Voice recognition is becoming more and more mainstream so if you have a Windows computer or an Apple product, you already have it! Find out how you can use voice recognition more effectively.

Computer training and resources

One of the biggest barriers to disabled people accessing technology is training. We offer links to a wide range of private and voluntary organisations that offer computer training and support for disabled people.

Talk tech

Join our online community to talk to an AbilityNet advisor to discuss technology.

Read our equipment tips.

AbilityNet is a UK charity that helps older people and disabled people of all ages use computers and the internet to achieve their goals at home, at work and in education.

We want to see reform of the PIP assessment

The Government recently announced changes to Personal Independence Payment (PIP) that would tighten up access to PIP for disabled people. We are concerned that this will result in disabled people missing out on vital support to help meet some of the additional costs they face as a result of their impairment or condition, on average £550 a month.

Figures today show that 65 per cent of claimants are successful at tribunal when they challenge a decision on their PIP assessment.

This shows that the PIP assessment is not currently working effectively for disabled people. Below, Abbi, a young disabled woman, shares her experiences of the process of applying for PIP.

Abbi’s story

When the little brown envelope informing me of the need to apply for PIP dropped through my letterbox, I was nervous.

Since first qualifying for Disability Living Allowance (DLA) in 2009, my health has deteriorated. Both the benefit itself and the access to the higher rate for the mobility component have made coping with this significantly easier.

With my mobility continuing to deteriorate, the thought of being rejected for PIP (as has happened to many of my disabled friends and contacts) filled me with fear.

“It did not seem to have been designed for disabled people”

Applying for PIP was a complicated process and one which did not seem to have been designed for disabled people. First, I had to spend 45 minutes on hold to the Department for Work and Pensions (DWP) to confirm that I wished to apply. Ironically, I only had time for such a call because I was off work for health reasons.

I have a hearing impairment and once the phone was answered, I found it very difficult to hear the speaker. However, a request to conduct the conversation over email rather than by phone was refused.

The rest of the process told a similar story. I filled out an application form which did not leave sufficient space for me to detail all of my conditions and medications.

“My assessment took one and a half hours”

I had to reschedule my first assessment due to access issues and was told that assessments can only be rescheduled once. If I was unwell on the day of the rescheduled assessment, I would have to apply again.

Upon arrival at the assessment centre, a sign on the door informed me that my assessment would take no more than 20 minutes, yet my assessor did not appear to have any of the information which I had painstakingly written out in my application form. Instead, she expected me to answer every question again, verbally.

My impairments are complex, but nowhere near as complex as those of other disabled people I know. My assessment took one and a half hours.

The PIP system remains inefficient

When the news came, I was incredibly relieved to hear that I would be awarded the equivalent of what I was awarded under DLA. I still have access to both the services and the funding which permit my independence. I can plan for a future, even as my mobility deteriorates.

However, when I read the Atos report on my health, I found multiple serious errors. It included the suggestion that I experience one of my most disabling conditions ‘once a month’.

I don’t understand the confusing series of deadlines by which I was supposed to have submitted different documents or why those documents were so blatantly dismissed.

Four years after its foundation, the PIP system remains inefficient, inept and, in many cases, potentially harmful to the mental and physical health of many disabled people in the UK. I am immensely grateful for the assistance and security which my PIP award affords me but, as the government threatens further cuts to PIP, I remain fearful for others who have yet to apply.

With one week to go until changes to PIP come into place, we are calling on Government to think again. We are briefing government officials about why it is so important that they don’t go ahead with these changes.

Instead, we want to see reform of the PIP assessment so that it accurately captures the range and level of disabled people’s extra costs.

We want to hear why PIP is important to you or your experiences of getting PIP. If you’d like to share your story, please comment below or email stories@scope.org.uk.

For further information about PIP, visit Scope’s website or call our helpline for free on 0808 800 3333.

Donate to Scope with Apple Pay

Our supporters can now make donations instantly with Apple Pay.

We’re one of 25 charities that have been supported by Apple Pay to offer a speedy and secure way to donate. This has allowed us to make the process of giving to Scope faster and easier by removing the need to enter billing and contact information on web forms.

If you’re using an Apple device simply go to our donation page, select ‘Once’ as your donation and option and the Apple Pay button should appear. 

Donations are vital to keep things like our helpline running.

Paula contacted our helpline after learning she had cerebral palsy at the age of 60. Until then, she had never received any kind of support. Our helpline provides valuable support and is only possible thanks to donations from supporters.

Thankfully, in 2017 there are more ways than ever to donate to charity. That’s why we’re delighted to be working alongside Apple Pay to launch a more convenient and modern way of fundraising.

Contactless payment technology has been revolutionary across the commercial sector, with hundreds of companies and customers benefiting from the speedy and secure way to pay. We’re really excited to be at the forefront of this technology in the charity sector, giving our supporters another way to make donations and support disabled people and their families.

Apple Pay works on Safari with iPhone SE, iPhone 6 and later, and Apple Watch.

Our helpline is only possible thanks to donations from supporters. You can help us be there for disabled people and their families by donating to Scope today with Apple Pay.

No one expects to find out they have cerebral palsy at 60

Meet Paula, who contacted our helpline after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support.

In January 2015, soon after my mother died, my sister called me and told me I should see my doctor as there was ‘something I should know.’ I went to my GP and asked him to read me the medical notes from my birth. He told me that I had mild cerebral palsy.

I’m 60 years old, and I had known nothing about it until then.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Sadly, attitudes still need to change.

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

Paula and her baby son
Paula and her son

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Scope’s support

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. With her guidance, I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

Paula and her husband
Paula and her husband, who have just celebrated their Ruby wedding anniversary.

Life today

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask. I’m finally making up for lost time. I’ve now got the confidence to try new things; I go to Tai Chi, I swim and I am a bell ringer.

 I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling.

Excitingly, I’ve recently become a grandma. This got me thinking about my own experiences and how much things have changed. What happened to me – my disability being brushed under the carpet – I wouldn’t want to happen to any child today.

Our helpline is only possible thanks to donations from supporters.

You can help us be there for disabled people and their families by donating to Scope today. Your gift can support services such as our helpline, offering vital information and guidance to those who need it – whether 6 or 60.

Reform is needed to halve the disability employment gap

The Government’s Green Paper consultation on Work, Health and Disability closed last week. Find out how we responded to the consultation and which areas we argued need action from the Government.

The Government has made a welcome commitment to halve the disability employment gap – the difference between the employment rate of disabled people and non-disabled people – which has stood at around 30 percentage points for over a decade. If the Government is serious about increasing disability employment, then it must tackle the barriers individuals face to entering, staying and progressing in work.

Improving out-of-work support

Too many disabled people aren’t getting support to get into and remain in employment. Where disabled people do access support, at Jobcentres or through employment support schemes, many feel it is too generic and does not take account of their needs or interests.

It is vital that all disabled people who want to work have access to voluntary, specialist support that is tailored to their needs. Taking part in any form of employment support should be completely voluntary for disabled people, and have no impact on the financial support they receive.

As well as this, Scope wants to see a total reform of the “fit for work” test, the Work Capability Assessment (WCA), which decides whether someone is able to receive Employment and Support Allowance.

Currently, the WCA fails to capture the range of barriers to work that disabled people face, which means many individuals are not getting the right support to move in to work. That’s why we’re calling for the WCA to be replaced with separate assessments for financial support and employment support needs.

Supporting disabled people in work

New research by Scope has found that in the last year 58 per cent of disabled people have felt at risk of losing their job because of their impairment or condition. That’s why it’s so important that once disabled people take up jobs, the right support is in place to enable them to stay in work.

Something we want to see is an expansion – and better promotion – of Access to Work, a scheme that provides disabled people with financial support to work. We also want to see the requirement to take Statutory Sick Pay in consecutive blocks to be lifted. This would give individuals more flexibility in taking time off from work, for example through part-time sickness absence or a phased return to work.

Working with employers to drive change

Efforts to halve the disability employment gap will only be successful if we see a shift in how disabled people are perceived in the workplace. The need for action is clear – 85 per cent of disabled people feel employer attitudes haven’t improved since 2012.

Building on progress made with other aspects of workforce diversity, employers should shift from compliance with the law to taking a more proactive approach to attracting, recruiting, supporting and developing disabled employees.

For instance, the Government’s Disability Confident scheme – which provides guidance to employers on hiring disabled people – has a Business Leaders Group which is well-placed to drive best practice among employers through new research and peer-to-peer networking. However, it is crucial that this group has sufficient scope and capability to realise such an ambition.

Next steps following the Green Paper

Scope welcomed the opportunity to respond to this Green Paper. However, this will only lead to change if Government and employers take meaningful steps to tackle the barriers disabled people face to entering and thriving in work.

Therefore, we would like to see a cross-government strategy for disability employment – presented as a White Paper – as soon as possible. This should include a range of reforms to support disabled people in and out of work, along with clear indicators to determine the success of these. It is vital that any proposals are informed by the experiences of disabled people.

Find out more about Scope’s work to tackle barriers to employment for disabled people.