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

We knew we had to share our story

Dan and Aimee White, parents of Emily (13) who was born with spina bifida, share their journey as Storyteller for Now is the Time campaign and call for a Minister for Disabled Children and Families.

When you first receive the news that your child will be disabled, you expect to be given all the support needed and a system will be there to guide you, so you won’t feel so isolated and sucker punched. The reality is that this does not happen. There is a void where charities, benefits, support groups and aftercare are not easy to reach.

So, when Scope called last year and asked us to be the face of their new campaign, Now is the Time, and share our story we knew we had to do it. The campaign asked people to sign a petition to call for a Minister for Disabled Children and Families to be in post. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

To speak to camera was cathartic

When the campaign launched last year, we played to our strengths, honesty and passion. The team from Scope visited us all at home to make a film. We sat talking about Emily’s first hours on earth and the lack of support. To speak to camera was cathartic because we wanted the country to know that, as a close community, we love our children dearly, they are perfect, and are contributing.

A teenage girl sat in a wheelchair, punching mats that are being held up by a lady. A man in the background smiling, recording the action on a phone.

My beautiful wife was invited to speak, by Scope, to an audience at the Natural History Museum, once again sharing our story, using our past to change the future. The message of necessity was spreading, with parents backing us on this campaign.

Our community was uniting

The online petition soon started to gather numbers, and we relentlessly and without social media mercy asked the people to sign and share. Old friends such as Matthew Wright of Talk Radio and more gave us the opportunity to take it to the masses. However, the real stars of the campaign were simply parents like us, beautiful people who have been there for us and vice versa. Our community was uniting, wanting, and demanding.

A Minister is needed to help support new parents and young disabled children everywhere. Someone would be there to link together all the hidden support. To make it easier to access information, to make services prominent and be a voice for families.

If this minister had been working in Government twelve years ago, the early days of our family life would have been different. We could have concentrated on parenting rather than thinking society had shut us out.

The message is being heard

We, as a family and with Scope have travelled and talked countrywide to all who would listen. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

Sharing our story for this campaign has had an impact. Over the last few months the Government has added several new ministers to the cabinet, for new, socially minded causes. It seems the message of supporting people through difficult, avoidable times in their lives is apparently being heard within Westminster. Surely, logically, our representative would be next.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

The power of storytelling for Scope

Storytelling is an integral part of Scope’s work. The power of sharing real life and lived experiences through our platforms influences policy and challenges societal attitudes.

In our recent campaign, Now is the Time, parents with disabled children shared their stories of the gaps in support they experienced, from birth to diagnosis.

For National Storytelling Week, four Scope storytellers share the impact of storytelling for them. We hope you enjoy their stories.

Christie “Sharing our story has had a huge impact on me personally.”

As a parent, hearing the words that your child has brain damage, is crushing. For a long time, I could see feel nothing but despair, guilt, anger and bitterness. I fell into a deep depression and couldn’t focus on what Elise needed from me.

Getting involved with Scope and sharing our story made the biggest difference, we met other families who were going through the same as us, they helped me understand that I wasn’t alone, and it wasn’t my fault.

A girl smiling at the camera, being cuddled by a lady. In a room with lots of toys.

Elise started to progress in ways that we never expected. Seeing the way other people with disabilities lived their life and the amazing things they were achieving, made me realise that as long as we adapted life a little and had the right support, there was no reason Elise couldn’t live her life to the best of her ability.

Sharing our story had an amazing impact on us because our friends, family and the followers Elise has on her Facebook page, have read more into what we have to face, like the fight for services, funding and support.

I shared the campaign and then I watched it get shared by so many people. I kept checking online and watching the signatures increase, it was amazing! We had some lovely messages from people telling me they didn’t realise how much we had to face.

Only positive things can come from sharing your story, it helps in ways that you would never think and definitely helps you realise that you aren’t alone in this!

Read more about Christie’s story.

The Ratcliffe family “Support others by telling your story.”

Being a Scope storyteller is a privilege as we are able to share our personal story, whilst understanding that we are also supporting the vital work of Scope.

During our last Twitter Takeover, the number of people who signed the petition call for a Minister for Disabled Children and Families rocketed. We were pleased that people didn’t only like our story, but it encouraged people to take direct action. The needs of disabled people in our country are significant, we all know that.  Telling our story, if it helps to raise awareness, is a good way for us to help.

A family photo of the Ratcliffe family - dads Garry and Kyle, with their four children, three of whom have impairments.

We have really enjoyed sharing our family’s story. It has given us the opportunity to put into words what, to us, has been just part of everyday life. When we get feedback, people often comment on the things people take for granted; family outings or going for a haircut. We have been told that our family’s determination to lead full and fun-packed lives, provides inspiration to others and, if it does, then that is fantastic! What better way to support others by telling your own story?

Read more about the Ratcliffe family’s story.

Menna “Change is needed.”

After re-reading my story, it made me realise the little professional support that parents like me receive after diagnosis of your baby. Also, the lack of support the children get, especially when growing up and wanting independence.

A smiling lady holding a baby.

I’m hoping that by sharing my story it might help the government realise that change is needed, not only for the beginning of a child’s life, but also when a child is growing up.

Read more about Menna’s story.

Sam “Sharing my story has helped me to not feel so alone.”

Storytelling is believed to be one of the most ancient of human activities, it’s easy to see the benefit is not just in the listening but in the telling too.

Sharing my story has helped me to not feel so alone. Becoming a parent of a severely disabled child and the paths you have to navigate because of that, can be very lonely and isolating at times. It’s easy to think you are the only one going through this or blame yourself for over thinking things or feeling down.

A lady and a child sat at a table. A man is next to the lady. All are smiling and looking at the camera.

Discovering that you are part of a much bigger group of people facing the same or similar challenges is empowering and comforting. Listening to other people’s stories helps to put everything into perspective and gain some sense of balance.

I’d like to think that sharing my story has helped the Now is the Time campaign by giving another personal perspective on what becoming a parent of a disabled child is like. There is still much to be learned and improved on in the diagnosis of children, the care and support families inevitably need, and the funding required to give people all the facilities and equipment disabled children may need to live a full life.

I hope my story will help those in positions of power to realise now is the time to support people better. I never want another new mother to be told their baby has “something wrong with them” then be left alone on a maternity ward. That should not have happened to me and I hope it will never again happen to another parent.
Sharing your own story, possibly helping someone else with your words even, is a gentle yet powerful part of a healing process.

Read more about Sam’s story.

We’d like to thank all of Scope’s storytellers, past and present, for sharing real lived experience to drive social change so that disabled people can enjoy equality and fairness.

During National Storytelling Week, we will be sharing lots of different Scope storytellers and telling you how you can get involved.

“I wanted to know that the future was going to be okay.”

Menna, mother of Cerys who was born with Down’s Syndrome, talks about the lack of support, emotional and financial from birth onwards.  

I’m Menna, I am a single parent. When I found out I was pregnant, the relationship was over. I had no support and direct family support is minimal as my family live far away.

I didn’t know that Cerys was born with Down’s Syndrome until she was ten days old. The hospital just gave me a leaflet. No-one really discussed it with me. I was in a room by myself. The midwives were fine, but they didn’t know enough about Down’s Syndrome themselves to be able to discuss it with me. There was no one able to sit down with me.

We got referred to specialists to check her hearing and heart and everything else. I felt alone, there was nothing. I was just handed this baby and left alone. Obviously, being a new parent is scary in itself, without finding out that you have a disabled child. I was just left to get on with it.

The consultant we saw said that Cerys will possibly always have the mental age of 13. That was all she said really. There was no advice about her having Down’s Syndrome. There was nothing they could really tell me.

I couldn’t see a future for her

There is no disability in our family. I didn’t know anybody with a disability. I just remember thinking, I couldn’t see a future for her.

A young girl on a bed with her head resting in her hands and smiling at the camera
A young happy Cerys

They actually gave me a DVD to watch, which was no help whatsoever. It didn’t reassure me at all. In fact, it made me feel worse. The DVD was all about young children and toddlers, nothing about the future. I wanted to see older children and adults rather than babies. I had my baby and I wanted to know that the future was going to be okay. I needed a bit of reassurance really, which I didn’t get.

I just kept plodding on

There were no local support groups. I don’t drive. It made things hard. There are no support groups at all in my area.

I just kept plodding on. I did have a close friend who had a little boy, without a disability, who were quite close. Obviously, her experiences were different to mine.

You feel a bit vulnerable. Cerys was slower with everything. Things like eating solids, I couldn’t just give her solids because she would have choked. It was quite difficult. She was probably 18 months old before she started experimenting with food. I worked that out myself.

It’s been a case of trial and error. Obviously, I had friends who had children so I learnt from them, rather than specialist advice.

There is nothing when they are babies

When Cerys was a toddler, I started to have specialist support coming out to meet her for things like physiotherapy. Probably from about nine months old. In the early years, there is nobody.

Once you get the Disability Living Allowance [this is now Personal Independence Payment] you get other support like carer support. Financially there is nothing. If you have a disabled baby, there is nothing when they are babies.

A mum holding her baby and smiling and looking at the camera
Menna holding a new born Cerys

I applied for Disability Living Allowance for her when she was a baby but got refused. They said she was no different to any other baby. Although the hospital appointments begged to differ. There was no financial support until she was three.

I was advised not to go on the internet and not google because of the wrong advice I would be given. If I needed any advice, I would go through the Down’s Syndrome Association. If I had a specific problem, they were good.

Any support you can get, grab it

In the early years you should look for help if it’s out there. That’s what I lacked. Not getting the help and support from anybody. And if there are support groups, try them.

Any support you can get, grab it with both hands. I have noticed that as my daughter has gotten older, that the support has gotten better, but I still think that they do fail parents.

Cerys is beautiful inside and out

As a teenager, Cerys is no problem whatsoever. She has her moments, like any other teenager, but she is better than any other teenager.

She is amazing. She is funny. She is beautiful inside and out. She’s caring. She’s just the most beautiful teenager you could ever meet. You get the stroppy teenager, there is none of that. She is a lovely child. She always has been.

Cerys loves dancing. She loves posing. She had a couple of photoshoots. She is beautiful. I know you are biased as a parent, but so many people have said what a beautiful girl she is. She would love to go into something like that. I am looking into her going into modelling at the moment, but I don’t want to put her on the road to being rejected. Apart from that, she would love to be a model. She is amazing.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

George’s Marvellous Bike Ride is a community event

Lesley, a family friend of George who had quadriplegic cerebral palsy, cycles in his memory every year.  Last year George’s Marvellous Bike Ride partnered with Scope to fundraise to help other families and raise awareness.

In this blog, Lesley talks about George who inspired this tremendous event and how much it means to get everyone’s support.

A boy and lady looking at the camera and smiling
George and his mum, Anna

George inspired those around him to enjoy life

Since 2012, Georges Marvellous Bike Ride has gone from strength to strength. All in memory of one incredible boy. George Hutchings had quadriplegic cerebral palsy and needed 24-hour care. He was unable to move around independently or speak. George was always happy and inspired those around him to enjoy life. We want to continue to help others like him to enhance their lives and relieve the pressure on their families.

This year, we chose Scope to partner with. We felt like Scope had the right ethos because it supports people like George. It was an easy choice. I saw the challenges and hardship George and his family faced.

It is a community event

We all decided to do a ride as Anna (George’s mum) used to do a lot of cycling with George. It has been a very big part of their lives.  It isn’t just a ride. It is a community event. We want to incorporate as many people and make it as accessible as possible.

George’s Marvellous Bike Ride consists of a mix of rides and routes aimed at families.  A lot of children take part.  One boy raised £700 and he had a broken arm. There are options for all riders of all abilities cycling distances from 11 miles to over 60 miles.

An event banner with cycles at the top and George's Marvellous Bike Ride text in the middle and georgesmarvellousbikeride.org.uk
George’s Marvellous Bike Ride banner

We’ve had the most riders since we started in 2012

Our small team consists of me, my husband (Rob), Anna, George’s uncle Nick and a few more friends. We want to keep the ride small and informal as we don’t want it to be a huge ride that will lose all its meaning.

It’s a very emotional day, as it’s about George. It’s an amazing way to remember George and celebrate his memory. It’s so nice to see everyone happy, especially this year as it was a bright sunny day.

Georges Marvellous bike ride people cycling
Cyclists getting ready to set off.

It really came home this year how much of a community event it is.  It was lovely to see everyone in their bright yellow t-shirts. We had 92 altogether, which is the most riders we’ve ever had since it started in 2012.

We’ve had one little supporter from the start called Amy, who gets everyone sorted on the day. She was 7 at the first ride and is 13 now and has helped us every year since.

We will continue to raise money for George.

We will carry on organising the bike ride and spread Georges story. When it’s frantic the morning of the event I always say I’m never going to do this again, but then when it’s over I’m always the first to ask what date we are doing it next year.

Scope is incredibly grateful to everyone involved in Georges Marvellous Bike Ride and to George himself for inspiring so many people to make a difference.

If you would like to raise money and organise your own bike ride or fundraising event for Scope to provide services for families like George’s find out how you can get involved on our website.

When Leo was born deaf, it was the start of big changes in our lives

Leo was born deaf. In this blog his mother, Keighley, shares how the right support is so important to parents of disabled children to ensure their children get the best start in life.

From the moment Leo’s test came back with no response, support started that day.

It took two to four weeks before Leo was officially diagnosed as being deaf.

Considering I am profoundly deaf, you would think I would have had at least thought about the possibility of my children being born deaf. I had grown up believing my deafness was caused by childhood illness.

Leo was born deaf. From the moment the lady told us that Leo’s new born screening hearing test had come back with no response, support started that day. We were given phone numbers for support lines, direct numbers to them and leaflets explaining the next steps. Along with the reassurance that a Teacher of the Deaf (TOD) would be in touch soon to arrange a home visit. I remember thinking how stupid! He is only four weeks old, why does he need a TOD? How wrong was I?

Three ladies have supported us and helped make Leo the person he is

As well as the TOD support we have a family support worker who’s been with us since Leo was six months old.  The third person is Leo’s speech and language lady therapist who again has been involved since Leo was six months old.

Our TOD is the person we turn to when we have question’s no matter how silly they may seem. She has been there to give recommendations on simple things.  Like toys to help support Leo’s listening skills.  To celebrate all Leo’s achievements which might seem silly to other people, but she knows how important they are to us.

Our family support worker has become part of the family.  In the early days she was at our house weekly.  Supporting Leo with his listening and waiting skills he needed to complete a hearing test.  Without these skills Leo would have had to undergo testing while sedated which carries its own risk. Leo will quite happily sit and undertake testing using all the skills he has learnt.

When Leo was about two years old, his speech and language therapist observed him from a distance, getting ready to step in when she felt was needed.  Working with Leo to get him ready for when he needed his implants.

These three ladies have supported us and helped make Leo the person he is. Without them Leo wouldn’t be the confident chatty little boy he is today.  Of course, there are many more people involved in his care.

Attending that first group was a turning point for me and has changed our life.

This journey has changed me, its broken me at times emotionally and physically.  Without the support of the people mentioned I don’t think I would be where I am today which would have affected Leo and his progress.

As well as teaching Leo important skills, my concerns and worries plus my hopes and dreams for my children are listened to.

When I was nervous to attend a playgroup for deaf children for the first time, I was offered support by someone coming along with me without me having to ask. I know if I didn’t have her there that day I would have not gone.

That first group was a turning point for me and has changed our life. We have met new friends, started learning British Sign Language, and got involved in other support groups.

I have now come to terms with my new identity.  I am Keighley. I’m deaf and proud. My son will grow up never questioning his identity.

If we didn’t have the support, Leo would have started falling behind without a doubt

Writing this, I have been trying to think how we would have coped if we didn’t have the support. I truly believe we wouldn’t be informed and confident to attend meetings and say what needs to be said rather than allow people who don’t know Leo tell us what is best for him.

Support workers have listened and answered the same questions 101 times about Leo’s schooling. Stuff that we have understood at appointments is explained in simpler terms. Different people involved in Leo’s care have been brought together to make sure everyone was on the same page.

I have been given the confidence to remove Leo from the nursery he was attending after I was having doubts about Leo’s needs not being meet.  I’ve had support in attending nursery meetings and help finding a new nursery.

These examples don’t even scratch the surface of the times support has been there to help.  Leo wouldn’t be getting any of the support he gets from both of his nurseries and he would have started falling behind without a doubt.

Leo surprisingly hasn’t fallen behind in any other areas of developments

Today Leo is coming up to a year of having implants.  He wears his processors all day long and can tell us when they are not working.  His speech is developing so fast thanks to his Speech and Language Therapy and all the support he had leading up to and after his implants.

Two smiling young boys and a man playing the snow

He attends two different nurseries, one local to us. He has the best support from his Key Worker, the TOD and Family Support Worker.  They all work together to allow Leo to assess sound. He will start attending school in September which has a hearing-impaired unit. His Education Health Care Plan is being prepared and, thanks to everyone’s hard work, we have plenty of evidence for the support Leo will need in school.

Leo surprisingly hasn’t fallen behind in any other areas of developments which sadly does happen when there is no support.  To think what would happen if we were without our support workers fills me with fear.

I was shocked and horrified when I found out that we are in a minority.  Most families don’t get this support because of cuts to funding!  I can truly say the support we have received has been fantastic.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

Everyone focused on the negatives, the things that were ‘wrong’

Sam is mother of nine-year Lucy who has a complex genetic condition. 

In this blog Sam talks about her journey in pregnancy to the birth of Lucy, highlighting the gap in parental support.

Sam during pregnancy
Sam during her pregnancy

I’m married to Craig and we have our daughter, Lucy.  Lucy’s our only child.  She’s now nine years old.  Lucy was born with a very rare, almost unique condition called an unbalanced translocation. One of her chromosomes is missing a little bit off the end and in its place is an extra bit of another chromosome.

Clearly somebody thought there was a problem

I had been trying to conceive after getting married for about three years with no success and went through all of the different tests that you do.

The first round of IVF was unsuccessful.  Then we paid for our second round of IVF. We succeeded. We thought, ‘Great.  That’s fantastic’.  Then at the twenty weeks scan, everything changed.  She was too small, there was not enough fluid in the womb.  I had the scans twice a week for the remainder of my pregnancy.  I also had something called Dopplers every fortnight. Basically, measuring the levels of oxygen and other things, going in to make sure that there’s no placenta lymph insufficiency. We also saw an obstetrician every week, from about 22 weeks. Clearly somebody thought there was a problem.

I had a high-risk pregnancy. When I got to 37 weeks they pushed us into having a C-Section a bit earlier than, perhaps, we should’ve done.  She was born at 5 pounds 1 ounce. I bled a lot. I was quite poorly.

I hadn’t held my baby much or seen her enough

When she came out her left leg was above her head. It was a right odd shape because of her hip dysplasia, which they still didn’t know about because they just said she was breech.  I wanted, skin-to-skin contact but I only spent about five minutes with her. They took her off to a whole different department in the hospital.  She wasn’t even, in the room next door.

A paediatrician stuck her head through the ward curtain and said, ‘I think your baby has got a genetic problem,’ and tried to go away again.  I said, ‘What do you mean, like Down’s?’ that was the only genetic condition I knew.  She said, ‘Yes, I think your baby has got Down’s Syndrome,’ and then left me.  I was on my own for about two hours after that.

In high dependency unity
Lucy in the high dependency unit.

I hadn’t held my baby much or seen her enough.  I couldn’t feel my legs because of the spinal block, but I persuaded the nurses to let me go with my mum and my husband to see my baby.  They had to wheel me to the other bit of the department.  I was so physically poorly I was sick when I got back but I was determined to see her, she was tiny but perfect.  She was in the high dependency unit (HDU).

I would’ve broken sooner had I not been able to see her

I was in hospital for five days.  To be honest I think I would’ve gone stir crazy if I’d stayed any longer in that room.  For my own sanity I came home, but having to leave her, I howled like an animal.  Coming back without your baby having gone in to have one, it’s absolutely horrendous. The worst experience of my life.  My heart and soul were 25 miles away in this hospital where Lucy was in her little cot.  Every day we’d go in to see and cuddle her.

You’re not supposed to travel, really, having had a C-Section, you’re not supposed to be in a car travelling, so I got this special scar cover for protection.  All the things I did physically were wrong in terms of healing after major surgery, but emotionally I would’ve broken sooner had I not been able to go and see her.

I just lost it

The initial diagnosis side of things came on day two.  There was a whole load of stuff going on and it wasn’t handled very well. There was no counsellor there at all. I do think that was a bit odd.

When she was born there was a paediatrician there.  He said she had ‘Dysmorphic features’ which I took to mean he thought she was funny looking.  To be told that when you’re literally high on drugs because you’ve just got the morphine flowing through you, I just lost it.  He should’ve known better, than to say that.

Sam holding baby
Sam holding Lucy

You can’t even see your child. They’re in a completely different room in a different ward.  Somebody you haven’t even met has said these things about your kid and you think maybe they’ve got it wrong. I went into, sort of, pretty much denial.

The system seems to write off your child

I know she understands what we’re saying and we understand what she wants.  I can’t describe it, really, apart from that.  Everybody who knows her loves her.  She’s a very warm personality and funny, a wicked sense of humour.  These are qualities I don’t think I saw at first because everyone focused on the negatives. Certainly nobody told me about these and we had to just find out ourselves.

That’s the point.  The real shame that at the beginning, the system seems to write off your child, particularly with learning disabilities. It’s all focused on what they’re going to be able to achieve. You know, job, marriage, that we have put categories on those as valuing, as important. It’s society that makes it difficult.

Lucy and her mum and dad on a day out
Lucy and her mum and dad on a day out

She’s just won a Triumph Over Adversity award. She got picked out of thirty in her age group in the category.  She’s just incredible.  She has this depth of soul, just having suffered so much. She has a bravery that is truly empowering to be around and a forgiveness, as well.

I really wish somebody had told me that beforehand.  ‘You are going to enjoy this kid.  Yes, it’s going to be hard work, physical hard work,’. I wish there’d been more out there saying, ‘This is an opportunity.  You, your husband, your family, your friends and everybody that comes in to contact with her will grow into better human beings because of this experience.’  I know that sounds really rather profound, but it’s genuinely true.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Become a #DisabilityGamechanger and  donate today and help us provide services for families and provide the vital support they need.

 

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.

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

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