All posts by Scope's Blog

We're all about changing society for the better, so that disabled people and their families can have the same opportunities as everyone else.

Scope’s blog is moving

Scope’s blog is moving to a new home as of today. This means that this current blog will no longer be updated.

Don’t worry, you will still be able to read the latest news and stories from disabled people and their families. All you need to do is head to our new website’s ‘News and Stories’ section.

Thank you so much for your support over the last several years. We hope that you will join us in our new home!

If you have any questions or concerns about the move, please contact our Stories team at stories@scope.org.uk

Why employers should make gathering disability data a priority

Disabled people can and want to work, but too many face barriers to entering and staying in employment. Whilst there has been an increase in the rate of employment, disabled people are twice as likely to be unemployed as non-disabled people.

If we want to successfully tackle disability unemployment, then we firstly need to understand the scale of the problem.

We’ve been calling for businesses to improve their understanding of their disabled workforce. That’s why it’s positive that today the Government has announced plans to increase the gathering of disability data in the workplace. In a new framework it has published, the Government is encouraging employers to report on the number of disabled people they employ.

Below we outline what has been announced, and what we want to see happen next.

What does the framework focus on?

The Government has published a voluntary framework for large employers to report on mental health, well-being and disability.

On disability, employers are asked to report on the number of disabled people they employ, along with a narrative to explain what they are doing to recruit and retain disabled employees.

Why is reporting on disability data important?

Disabled applicants are a quarter less likely to be invited to an interview than a non-disabled person. And for every 100 disabled people who move into work, 114 leave.

By collecting and monitoring data on the number of disabled people in the workplace and their overall experience, employers will be in a much stronger position to understand where action is needed to tackle the barriers faced by disabled people, both in and out of work.

Employers already gathering disability data have told us about the value of doing so. Several have said that this information has helped them make the case internally for changes in their recruitment and HR practices.

We know that nearly half of disabled people have worried about sharing information about their disability at work. If reporting is to be a success, then employers will need to ensure their disabled employees feel confident enough to be open about their impairment or condition. This will help create a more inclusive and open environment for disabled people in the workplace, as well as ensuring that data gathered on disability in the workplace is robust.

What do we want to see building on from this framework?

The Government is taking an important first step in understanding better the barriers faced by disabled job-seekers and employees.

In order for reporting to have a real impact in tackling disability employment, there are a number of things that we want to see happen next:

  • The Government must ensure that there is a clear process for analysing any information gathered, and that this shapes future approaches towards increasing disability employment.
  • Any data collected and published by employers is easy to understand and is easy for disabled people to access.
  • As with the gender pay gap, reporting on disability data should eventually be a mandatory requirement for large employers, to encourage wider take-up of reporting on disability in the workplace.

What we will be doing next

We will be publishing a report early in the new year with data on the number of disabled people we employ, as well as data on staff well-being. This will be followed by a more comprehensive report looking at the experiences of disabled people at Scope.

We will also be encouraging employers to publish data in relation to their disabled employees. As part of this, we will be publishing a guide for employers setting out what data they should collect, and how to go about gathering this information.

Check out our website for information for disabled people in work.

Broadcasters commit to doubling the number of disabled staff by 2020. Why aren’t other industries doing the same?

The BBC, ITV, Channel 4 and Sky have recently pledged their support to becoming ‘more inclusive’. Lord Hall, director general of the BBC, said: “As an industry we must do more to increase the number of disabled people working in broadcasting.”

In this blog post, we talk about the Inclusive Workplace Network, a membership network of companies who want to become more inclusive of disabled people – and how your company can get involved.

Work can be of fundamental importance to who we are

For many disabled people, work is of fundamental importance to who they are. Work is not just about the money in your pocket at the end of the day. It brings personal benefits and is seen by disabled people as a way to contribute to society, maintain social connections and promote self-worth.

Ajay, wheelchair user, looking at computer screens at work

While employment is identified by disabled people as being one of the biggest enablers to living the life you choose, getting into and staying in work can be a huge challenge. Disabled people are twice as likely to be unemployed as non-disabled people, and the difference in employment rates between both groups known as the ‘disability employment gap’, has remained at around 30 percentage points for over a decade.

To add to that, our recent research uncovered that one in two (53%) disabled people have experienced bullying or harassment at work because of their impairment or condition. And 58% of disabled people have felt at risk of losing their job because of their impairment.

It’s clear these things need to change

Disabled people tell us that there are many barriers that prevent disabled people from finding work and progressing in employment. These include negative attitudes from employers, colleagues and recruitment agencies, inaccessible workplaces, inflexible working practices and outdated policies.

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At Scope we know that to drive societal change we need to drive change in the workplace. We have been working with companies on improving attitudes, behaviours and processes. Many companies also recognise the commercial benefits of changing their culture and becoming more inclusive. The ‘purple pound’ is valued at £249 billion per year, with an online spend of £16 billion. Having a more inclusive working culture and employing more disabled people will give companies a better understanding of this large consumer group.

Gem smiles at the camera in her wheelchair in an office

The Inclusive Workplace Network

In response to these factors we launched the Inclusive Workplace Network, a membership network of companies who want to become more inclusive of disabled people. Members receive a thorough review of several aspects of their business, from their policies and HR processes through to their health and safety procedures. Based on this data collection and staff surveys, they’re given thorough advice, support and recommendations on improvements. We will also provide support from a Scope employment adviser, sessions with Scope Workplace Role Models who will share their stories, and invitations to employment events with other network members.

If you’re interested in finding out more about what the Inclusive Workplace Network can bring to your organisation then please contact: InclusiveWorkplaceNetwork@scope.org.uk

I did a head and beard shave to help other families like us

Peter’s daughter, Elara, has cerebral palsy and has used Scope’s Sleep Service.  Peter wanted to help raise awareness and money for Scope so organised a fundraising event.

In this blog post, he talks about his fundraiser and how you can organise your own.

We saw how hard it is for some parents to cope

My daughter Elara was born 8 weeks early. The doctors and neonatal department soon discovered haemorrhages and believed this happened whilst she was still inside the womb. As time progressed, it was apparent that she had hemiplegia which would affect all her limbs especially her right leg and this was an indicator that she did have cerebral palsy.

A smiling baby in a high chair
Elara smiling and happy

We’re active on social media and on Facebook groups for parents of children with cerebral palsy and we saw how hard it is for some parents to cope. While the challenges facing Elara are comparatively mild others aren’t so lucky and the condition can have a significant impact not just on the children but on their families as well.

Visiting a Scope sleep clinic

My wife visited one of Scope’s sleep clinics. We found it useful and being there confirmed we were doing the right things to get Elara to sleep and we now know what Elara needs. The service was easy to access and was only down the road from us. We gave them a call and luckily there was an available appointment on the day. These services are so vital to helping parents in the same position as us.

I was only meant to do a head shave

A friend of mine did a head shave for charity a few years back and I thought it would be a great event as people always want to see their friend or colleague do something daft.  So, I wanted to help raise awareness and money for Scope.

My target was £250. I was only meant to do a head shave, but I mentioned in passing to one of my colleagues asking how much it would take to get sponsored to shave the beard off.

A man in a Scope tshirt, looking at the camera, holding a phone. He has a bald head and beard.
Peter halfway through his challenge

It then spiralled out of control in a good way, my colleague emailed out that we needed to get to £750 donations to get my beard shaved off. To my surprise this happened.

A man sat on a chair, holding all of his shaved hair and beard in his hands. He is looking glum.
Peter at the end of his challenge

The support from my family and friends was brilliant especially the support from the office.

Just before the shave we were below £600 but, on the day, someone made a large anonymous donation to get to the £750 target.

My Chief Executive Officer came back from sabbatical and increased the donations to reach £1000. I was so overwhelmed by the generosity that everyone showed.

Aside from seeing the generous donations come through for Scope, the most enjoyable part was the shocked faces from people! I was getting lunch just after the shave and people who I worked with walked straight past me.

The support from Scope was great and it was nice to see that the team were keeping in touch to see progress and how things were going. A lot of places will leave you to do it and you won’t hear from them.

It’s such a good feeling knowing you can help

I would absolutely recommend organising an event like this or any type of event for charity. Personally, it’s such a good feeling knowing you can help and the effort you put in gets a tangible result, to invest in the services to help disabled people.

I’m a firm believer of paying it forward to help each other to make this world a better place. It is important to understand that everyone is bound together and can achieve great things.

My target was only £250 however through the generosity of colleagues, family and friends I was able to raise £1085.18 for Scope.

I wouldn’t do anything different, I think I really hit the nail on the head with this event. However, if I was to do it again, I would organise a different type of event. Something like a physical challenge.

We want to support even more families like Peters by funding services like Sleep Right, improving sleep for disabled children. Find out how you can get involved on our website.

Dear Minister for Disabled Children and Families

Carly is an Autism advocate, consultant and professional speaker. She didn’t receive her Autism diagnosis until she was 32, after two of her daughters were diagnosed. She found it a battle to get the voices of Autistic women heard and in 2008 started to notice a lack of understanding and resources when it came to autism and girls.

In this letter Carly shares her thoughts on why she is supporting our Now is the Time campaign, and how a future Minister for Disabled Children and Families can help disabled children and their families get the best start in life.

Dear future Minister for Disabled Children and Families,

My name is Carly. I am an autism advocate, the mother of autistic daughters, and autistic myself.

Like many British disabled parents, we want our children to have a better tomorrow.

We have the passion and the drive. We won’t stop until all UK children have equity, including our disabled children. We don’t want anybody left behind.

Our task is lifelong. Our resilience is remarkable. Our need for support to help our children live a fulfilling life, is at times desperate.

Talent is everywhere, opportunity isn’t

As an advocate I have the privilege (and it is exactly that) to work for phenomenal British pioneers leading the way in disability equality. Most recently, participation with Right Honourable Lord Holmes on his vital independent review on disabled applicants and public appointments. Lord Holmes so wisely said that, “Talent is everywhere, opportunity isn’t.”

This lack of opportunity for our disabled children fails to recognise the gifts and talents disabled youth have, this lack of recognition could come at a great cost to our country in the long term.

Some of the brightest minds that can serve our country not only reside in well performing schools but also in Special Educational Needs and Disability (SEND) schools.

I have a friend, the acclaimed artist Rachel Gadsden, Rachel has a visual impairment yet in her talks she explains that “you do not need sight to have vision“.

The saying, “The quieter the mouth the louder the mind” means that as assistive technology becomes more sophisticated, the loudest thoughts, minds and perspectives will soon be heard louder than ever before.

Many are left isolated and forgotten

Please visit the family homes where home educated children live.  The children who were “not able enough” to flourish to their full potential in mainstream schools, yet not “disabled enough ” to warrant a SEND educational provision.

There you will find new thinkers, leaders and cyber security experts of tomorrow.  The most creative of artists, inventors and entrepreneurs, are waiting for you to notice them.  They are all missing out on the governments most diverse forward-thinking schemes like Cyber first, aimed to be advertised in schools.

This grey area of education leaves many of our most capable children isolated and forgotten.  They are left without opportunity or support outside their family.  This comes at a cost to our wallet, to our mental health, to our relationships, to our physical health and the NHS. And not to mention the cost to wider society of all that lost opportunity.

Carly writing on a poster at an event all about equality
Carly is an Autism advocate, consultant and professional speaker.

We aren’t asking for pity, we are asking to be heard

We must see disabled children’s abilities and not just their impairments.

We need a minister to work alongside parents, and the existing Minister for Disabled People and Minister for Children to ensure that no grey area is missed. We need you to be concentrating on disabled children alone so that no task is deemed too big, too small, too out of remit to be pursued as a policy priority.

Minister for Disabled Children and Families, we need you to ensure that when any new Disability Act, policy or project is discussed, you are there with a fine-tooth comb.  You need to ensure disabled children are a part of that policy .

At present some policies are too vague to be implemented. Some Acts have been written with adults in mind, and although this is of vital importance, it leaves disabled children behind.

Now is the time

What if parents of disabled children were better understood and work with a Minister as agents of change, respected by professionals and not viewed as “hysterical” or “hard work”? The truth is we aren’t either, we are often just exhausted.

How much talent could be discovered if we supported the most underestimated?

What if we celebrated disability history and the vital contributions disabled people have made to the UK?

What if we had someone like you making it happen? Now is the time to help disabled children and their families get the best start in life.

Yours faithfully

Carly Jones MBE

British Autism Advocate and Mum

Be a Disability Gamechanger and sign our petition calling for a new Minister for Disabled Children and Families.

Designing content that puts disabled people and their families first

Scope wants to be the go-to organisation for disability information and support. We’re aiming to reach two million people a year, supporting disabled people and their families on the issues that matter most to them.

We want to make sure that people can access the information and advice they need easily – whether they are a customer of our services, are calling our helpline, or are looking for support and advice on our website.

This has meant re-thinking how we design and deliver our support and advice content. Our new approach has four central principles.

Content design

We design content to help people solve problems. Disabled people and their families are at the heart of our work. We ask them about their information needs and write content to meet those needs. Then we test the content with disabled people and their families and make improvements in response to what we find out.

Joining things up

Our policy team helps us plan content that supports our social change goals. Once the content is written, policy advisers join critique sessions to check and improve content before it’s published. We’ve built a great relationship with the policy team by working like this. And it means that the information and advice we give our customers is consistent with our public influencing work.

Evolution not revolution

We evolved our content design process during a ‘proof of concept’ project with a team of three. We’ve used what we learned to scale up to a team of nine, delivering advice and support content on a much more ambitious scale than Scope has done before. We use Kanban, a workflow management tool, to optimise the flow of work through the process. The Kanban ethos encourages us to carry on evolving and improving the way we work.

Open and transparent

Our processes and policies are written down and open to all. We have a clear content strategy and style guide. We use a shared Trello board to map the progress of each piece of content, which means we can easily spot if something is getting blocked and do something about it. If we see ways to improve how we work, we say so and agree what changes to make.

This is a summary of how we’re evolving the practice of content design to achieve our strategy, Everyday Equality. We’ll share more about how we work and what we’ve learned as our journey continues. Watch out for more posts from our content designers, user researchers and the people we work with.

Visit our employment section to see the first results of Scope’s new way of producing content.

“I can’t live the life I choose without PIP.”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility. She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

Following Scope Chair, Andrew McDonald’s comments on how the benefits process is a ‘hostile environment’, Josie describes her experiences of the PIP process.

I cannot live the life I choose without Personal Independence Payments (PIP).

I need a carer to go out anywhere and, beyond local, basic shops (many of which I can’t access), I need a wheelchair accessible taxi. This carries an extra surcharge of £10 to £20 per trip in most areas.

I pay towards my care and need to provide all materials. Without PIP, I would not be able to even meet my basic bills. This is before you consider anything fun. My bills are so much higher than an average household my size.

Josie, a disabled woman, smiles at the camera
Josie has had a negative experience of the PIP process

You feel on edge all of the time

The whole PIP process is very disjointed. Many would think the Department of Work and Pensions (DWP) and PIP were the same department. No. If you communicate with PIP or the assessors, they don’t share any systems so two calls are needed. When you’re already poorly, the energy to make several calls is a lot. Most days you just have to pick between the most important calls.

You feel on edge all of the time. When I was in hospital, they sent an assessor. Thankfully, he rang the day before so it didn’t count as me not meeting the appointment. Had I missed that call, it would have and I would have been sanctioned.

When I was discharged, I rang them to get a new date. I took a cancellation which meant I didn’t have to wait many stressful weeks. I had one home assessment, but then they lost my file. They rang me and told me that I had to repeat the whole home visit again. This was really stressful.

The assessments are stressful

I’ve had so many assessors tell me that “they understand”. They don’t. They can’t. Their ability to keep a roof over their heads is not dependant on this assessment. Not to mention the reality of living day to day with an illness and disability.

The assessors were scripted. Professional but formal. I found it hugely stressful and can’t imagine how anyone with mental health issues, developmental delay or dementia would cope. I was scared anything I said would be written down differently to what I meant. I was petrified I would have to appeal and a tribunal would happen.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie, who is severely allergic to a long list of different things, wearing her face mask

I’m housebound and allergic to the world. Stress alone could land me in A and E with a life-threatening reaction. This was completely unknown to the assessor when they arrived. It upset me for four months after my discharge. I cried with relief when I got the award letter because the practicalities of me attending a tribunal seemed impossible.

I did not trust the PIP process at all. Despite having Disability Living Allowance (DLA) for eight years, the whole assessment started from scratch. Mother’s maiden name, date of birth, everything. It’s almost like you have never claimed at all.

I felt like I was once again having to prove my illness and disability.

What are your experiences of the PIP process? Share your experiences on our Facebook page or by emailing us at stories@scope.org.uk.

“This is why I fight to overcome barriers to employment for disabled people.”

Max, a writer and Disability Gamechanger, writes about the challenges he faces finding employment as a person with autism.

I choose to fight for the voices of others on the autistic spectrum. Through my own efforts to find work and my writing, I aim to show that those on the autistic spectrum can play an important role in the workplace and indeed, society.

As someone who has a deep passion for social issues and strongly believes in the concept of society, I want to contribute to society through employment. And yes, I do realise that means paying taxes!

All I need is a bit of patience

Along my personal journey, there have been many positive experiences as well as challenges and people who have believed in me. I recently undertook a placement at a very inclusive and welcoming PR marketing agency in Barry, Wales. Here I was given the patience and understanding to build my confidence and work at my own speed. I am also working part-time with an education technology start-up to help develop kids and adults digital skills.

The main barrier for me in the past, and one which I still sometime face has been interviews. I often struggle to express all my strengths in the pressurised situation that is a job interview, and as a result I feel that employers only see my anxiety.

Though I recognise that verbal communications skills are important in marketing and any other employment sector, I know that once I settle into an environment I can achieve anything I set my mind to! All I need is a bit of patience.

One of the biggest impacts that such barriers have had on me are feelings of isolation and loneliness. I am sure these are feelings which are shared by many others in the disabled community.

A young man smiles with his dog
Max at home with his dog

Everybody has value to add

To achieve progress, I believe there should be a greater focus from employers on what  disabled people can do, not what they may find difficult at first. Just as everyone has their own weaknesses, everybody has value they can add to a team.

Creating an environment where all abilities thrive, enabling a wide range of talent, is key. Similarly, creating interview processes which are flexible and allow this talent to shine, I believe can be a positive step forward.

Take those with autism, for example. We are creative, focused and have attention to detail. These are all positive traits which can be valuable within a team.

By creating more diverse teams, this means that more organisations will have the ability to represent their customers and society. Surely, this is something we can all agree is a good thing.

It is time that we focus on ability, not disability.

Half of disabled people feel excluded from society and many say prejudicial attitudes haven’t improved in decades.

We know there is still work to do until all disabled people enjoy equality and fairness, so we all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so get involved with the campaign today to end this inequality.

“This is how assistive technology is helping me live the life I choose”

A keen campaigner and writer, Raisa uses lots of different assistive technology to help her do day to day tasks. Here, she writes about some of these pieces of technology and how they help her live the life she chooses.

I’m very selective when choosing assistive technology. Of course, everything has its purpose, but if it is no use to me, there’s no point in using it.

For me, because I have the option, I don’t use assistive technology for absolutely everything. I’ve only considered using assistive technology seriously when I started university in 2013.

Because I was doing a Creative and Professional Writing degree, it was clear that there was going to be a lot of writing involved. There was no guarantee that I would be able to type everything up in time, by only using two fingers on the keyboard without a fast typist beside me. I was lucky in the sense that I got quite a lot of help through Disabled Students’ Allowance (DSA) at uni.

I’ve always had the habit of writing nearly everything by hand so I can literally see what I am typing, rather than transferring my thoughts straight onto a computer. I have never been able to do it. The only exception is when I compose emails. But even then, if my email is really long and I’m really exhausted, I would probably end up using some sort of assistive technology.

A woman laughs whilst talking in a group at the Scope for Change residential
Raisa talking to fellow campaigners

Technology has so many uses

I am (literally) using Dragon Naturally Speaking 13 to dictate this post in my bedroom. This version is pretty good. I was first introduced to this software in 2009, when version 9 came out. It was horrendous. No matter how much I tried to train the software to my voice there were too many typos per page. I literally wanted to rip my hair out.

I got Dragon 12 at the beginning of my university course in 2013. Thank God I did. There was just too much to do in so little time! Don’t get me wrong, it still makes mistakes, but they’re so rare that I can live with it now.

Something else I use quite regularly was my Olympus Sonority voice recorder. I used this device to record every single one of my lectures or big public events over the last five years. It’s great that they automatically convert into audio files that work on pretty much any device – so I could listen to them anywhere if I wanted to, either on my phone or laptop. It saves as a compatible file for your memory stick also – bonus!

Assistive technology can help you live the life you choose

A family friend showed me Apple’s voice recognition software and how it worked before I got my first iPhone. I got really excited by this. I wouldn’t use Siri in public, but voice recognition software on my phone has helped me do my most important job these days – dictating and replying to emails! I have a habit of sending really long emails! I don’t have to use my laptop, I just have to hold my phone in my hand and speak.

A woman laughs with another campaigner at Scope for Change
Raisa laughing with another campaigner

One of my really long emails to date, which I wrote by only my right thumb and predicted text (without using voice recognition at all), took me two hours to type. However, if I wrote that same email again using voice recognition software on my phone, it would have only taken me about half an hour. It is also a quick way to make notes in your notes section for reminders.

I personally wouldn’t go as far as using assistive technology to help me with absolutely everything. I don’t want technology to directly take over my life. However, I hope that this post has been helpful in showing how assistive technology can help you to live the life you choose.

We know there is still work to do until all disabled people enjoy equality and fairness, with digital and assistive technology playing a huge part in this. We all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.

“Disability is full of compromises and workarounds”

Edith was diagnosed with Multiple Sclerosis when she was 16. As her condition started worsening, it was essential that she found a social care package that met her needs.

In this blog, Edith writes about how finding the right social care package has enabled her to focus on the other important things in life.

Writing about my twice daily care visits feels like trying to describe brushing my teeth, or cutting my nails. It’s boring and I aim not to focus any great deal of time on it, it’s just an essential part of daily life.

A young woman smiles whilst sitting on a sofa, typing on a laptop
Edith sitting on a sofa with her laptop

I use a wheelchair full time, but the ‘book ends’ of my day are especially hard. Lying in bed overnight, my whole body stiffens up and takes a while to stretch out and co-operate. Come evening, fatigue has turned me to jelly.

Add in flare ups, temperature variations and colds or viruses. Each day is a surprise. My carer starts by stretching my legs in bed and helping me to a sitting position. Using a standing frame I transfer to my wheelchair, and in a subsequent set of routines I get dressed and ready for my day. The process is fairly cumbersome and long winded, but we go the fastest we can, totalling around an hour.

Night calls follow a similar set of processes, all made quicker and easier if I’m having a ‘good day’, but following a routine which we know well enough to follow without fuss.

It means I can focus on the rest of my life

My social care calls are crucial. Do I want to have company first thing in the morning? Would I love to get up and make a cup of tea then go back to bed for a few hours? What about those unexpected evenings out where one drink turns into many and you just re-adjust your 12 hour plan accordingly.

The alternative is being bed bound, in some residential home, or relying on my parents (while I can, then what?). So when it works, my social care support enables everything else.

With the essentials of personal care covered, I can focus on the rest of my life, the nights out, holidays, work, credit card bills… just life. To me social care is as necessary a part of my functioning as any of my healthcare, if not more so.

I’m frustrated by the wires I’ve had to untangle to get social care in place, the lack of transparency in funding and set up. It feels more vulnerable than the NHS and prescription meds, yet to me should be treated in the same way.

It’s all a part of my life I’d rather not have to incorporate, but fundamental for me to achieve, do, live or anything else.

Read more from Edith on her blog.

Half of disabled people feel excluded from society and many say prejudicial attitudes haven’t improved in decades.

We know there is still work to do until all disabled people enjoy equality and fairness, so we all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so join the campaign today to end this inequality.