My mum was like, ‘Wow! It’s a new Elliot!’

I’ve been working with some of the people Scope supports to live independently in the community, whatever their support needs. I wanted to share a few of their stories.

When I met 24-year-old Elliot at his home in Hereford, a bungalow he shares with two friends around his age, he was in a bit of a hurry. He had an interview that morning to volunteer at a local hospice.

Elliot outside his house in Hereford
Elliot outside his house in Hereford

“I work at a charity shop in Hereford. I want to get more jobs or voluntary work, just to keep ticking over,” he told me.

“I’m hoping to do a National Diploma at the shop, and then when I’ve done voluntary work for a while I’ll hopefully move up slowly.”

Leaving home

Elliot has cerebral palsy and autism. He’s a full-time wheelchair user, and has lived in a shared house for the past six years, working with Scope support workers.

His parents helped him find the place he’s in now when he was 18, and he says he hasn’t looked back since. He started out with a few dinners and overnight stays, and soon decided to make the move full-time.

“A few weeks after I moved in, my mum came to visit and she was like, ‘Wow! It’s a new Elliot!’”

Choice and control

Scope delivers Elliot’s care – which he pays for with his personal social care budget – and that of his housemates, but Elliot is a tenant in the house. This gives him choice and control over the way he lives. He could move out if he wanted to, or change his support provider.

Elliot in his bedroom
Elliot in his room, which he’s decorated with lots of furniture in his favourite colour, red

There’s a support worker in the house 24 hours a day. The three housemates pay for this together. Elliot also has a one-to-one support worker during the day.

“Obviously we have our ups and downs, like everyone, but I love the guys here. Scope is very special to me, because they help me achieve what I want to do.

“I go everywhere with a support worker, but we’re trying to get me green on the traffic lights system [a road safety programme] so I can go out on my own – into town, into work.”

‘The best experience’

Elliot’s interest in charity fundraising led him to do a 14,000-foot tandem skydive to raise money for his local air ambulance. He single-handedly raised more than £1,100.

Elliot with his skydiving instructor, Jason
Elliot and Jason, his skydiving partner

“It was the best experience of my life. I was harnessed to Jason – I couldn’t have done it without him. It’s not easy to find somewhere that caters for people with disabilities – I had to ring round all over the country.

When they put me in the harness, I was like ‘Here we go…’, but once we jumped I didn’t even feel nervous when I looked down. It was absolutely amazing. The whole family came to watch.”

I met people with a range of impairments. Elliot mostly needs support with staying safe in the outside world, but others have more complex needs. I’ll share some of those stories next week.

Find out more about Scope’s community support services.

Twenty Years On: The Spastics Society to Scope – a celebration in Parliament

On Monday evening, Scope hosted a Parliamentary reception to recognise the twenty year anniversary of the name change from The Spastics Society. Twenty years ago, “The Spastics Society” wanted to challenge attitudes by saying something positive about disability.

To recognise the events of twenty years ago, we brought together several former Ministers for Disabled People from across the two decades for a group photograph. The reception also featured a curated display of items to reflect Scope’s work over the past two decades.

We were honoured to be joined by Rt. Hon William Hague MP – who was the Minister that launched Scope in 1994. William delivered a speech at the reception, the text of which can be found below:

Group photo

It’s a great pleasure to be marking this anniversary, twenty years on. I remember it very well – standing out there on the terrace of the House of Commons, watching the largest flag in the history of the country being unfurled on St Thomas’ Hospital.

Thank you for putting a photograph there of me with a lot more hair than I have today – you can really date it!

There are a few of us here who can remember that event twenty years ago. And it was the right thing to do – the name change. It symbolised what we all hoped was a change in attitudes, of opportunity, of expectations for disabled people at that time. And it was an exciting time to push those things along. It was also the year, as it happens, when we set out to pass the Disability Discrimination Act.

I became the Disability Minister that year in 1994. Like many ministers, I had not asked for or expected to be the Minister for Disabled People. One day I wasn’t, and the next day I was. That is how ministerial reshuffles work.

But it turned out to be one of the most rewarding and fascinating tasks that I’ve been given in politics. And there was intense pressure at the time to have a major landmark piece of legislation – and I pay tribute to everybody across parties – many in the Labour Party – who pressed for that at that time. There was intense pressure and campaigning, and the question was how to respond to that and what sort of legislation to create.

WIlliam Hague looking at photos from 1994

The first thing I did when I was appointed was I went back to my constituency and met disabled people there and talked to them about what would really help. Then I consulted many of the organisations including this one – and including Mencap – also represented here tonight – about the shape that legislation could take.

And then I went to the United States to study what they had just done. Because in 1991, the US passed the Americans with Disabilities Act. This was signed into law by President Bush but with the support of people across American politics. And I wanted a situation where across parties we would pass a piece of legislation that would have enthusiasm across the House of Commons. So starting with the US, as they had become world leaders in this field of disability legislation, we should learn about them.

I spent about a week in the US, and on the plane on the way back I sketched out the framework of what became the Disability Discrimination Act – with a lot of hard work by some very good officials, Parliamentary counsel and by people who draft legislation. And then it took shape in Parliament with huge pressure for such legislation from the Opposition, from the Labour Party, and with many uncertainties and debates that we had to have in the Government – just as a Minister of State trying to persuade the Cabinet we should do this.

But I had a secret weapon – the Prime Minister. And the Prime Minister was Sir John Major – and he was very much in favour of disability legislation. So every time I hit a problem, the little Minister of State – me – in only his second job in Government – was able to call on the Prime Minister to remove all the roadblocks, to persuade the rest of the Cabinet. And this, by the way, is how I recommend to all future ministers how you do this. As I have done for the last twenty years – I’ve done the same in all my ministerial jobs. Don’t waste time arguing with the others – get the Prime Minister to tell them that is what we are going to do!

And indeed it was what we were going to do. I’m not sure it took a lot of courage, but it did take a bit of cunning to get it through in the right form, to make it far-reaching enough and to create a piece of legislation that is a milestone. And it’s been added to successfully since then, including by the Government that followed.


So it is across Parties that we have worked on this over these twenty years. But its basic concepts and structure have stood the test of time. And I hope, created many more opportunities for tens of thousands of disabled people.

Before it had finally gone through the House of Lords and finished its passage through Parliament I had already moved on to another job that I didn’t expect or ask for – being Secretary of State for Wales.

In fact it tells you something about politics that, all the jobs I did in the 1990s that I didn’t expect or ask for, turned out to be fascinating and rewarding things to do.

And when I did something that I did ask for – being leader of the Opposition – it was an absolute nightmare! So just remember that when you’re asked to do something by the leader of your Party.

Alistair Burt took over and finished the progress of that legislation, and I hope since then that it is something indeed that we’ve been able to build on, which I’m absolutely convinced that it is. Greater enforcement of the legislation was added a few years later. Legislation is sometimes necessary to force change – to accelerate change. And it certainly was necessary in this case.

But the work of organisations like this one makes sure that disabled people have the same opportunities as everyone else – or that is what we’re trying to ensure by working together. Not just through the growing force of regulations, but through the permanent changing of attitudes and through practical assistance.

And you are concerned with making sure that people are valued for what they can achieve – not judged by what they can’t. And that is an extremely important objective. You say at Scope that aspirations should not be limited and that by recognising that a diverse workforce that helps individuals fulfil their real and full potential makes sense in every way – makes business sense as well as common sense – as well as being right in principle.

Stands with key dates around the room

So this was an important time, twenty years ago, and at that time Scope played an important role – and it continues to do so today.

The work of Scope over the last twenty years – as we see along the room here, the major campaigns displayed on these panels – are testament to the range of work carried out to remove barriers, to encourage engagement in democracy, to improve the representation of disabled people in the arts and in society in general.

So I think we’ve come a long way in twenty years and I know that the work of Scope has changed a lot over the last twenty years. But we must make sure that over the next twenty years that the enormous change in attitudes and substantial change in opportunities is continued.

And I think you can be sure that the members of parliament here across all political parties are absolutely determined to work with you to make sure that is what indeed what happens.

So congratulations to Scope on these twenty years, and thank you very much indeed for having me back.

Meet Scope’s Foresight and Innovation team

In April, Scope set up a Foresight and Innovation unit. Since then we’ve been busy setting up some new projects, developing our own innovation process, and gathering ideas and inspiration from innovative work from across the world.

The Foresight and Innovation unit is designed to help Scope access the best new thinking, data, external ideas and practical tools to develop pioneering processes, services and products that help us achieve our vision of a better world for disabled people and their families.

It’s been a steep learning curve for all of us, especially two of our Charity Works graduates, Zoë Boult and Rosa Manning. They joined the unit at the beginning of September and have been plunged headlong into a world of minimal viable products, hacks and prototyping!

But while the innovation world is full of jargon, and there are lots of definitions of innovation and lots of books and consultants with views on how to do it, for me, innovation, at its heart, is simply about solving problems.

Contrary to popular belief, innovation is not some mysterious process practised by a chosen few; in fact most great innovations have been developed by ordinary people inspired by a problem. So if you think innovation isn’t something you can do, think again.

Most innovation is incremental, it will make what you already do a bit better (think about ring pull openers on tin cans or quick drying paint). On rare occasions, radical innovations can transform the way we live or organise ourselves as a society (think about the Internet or the petrol engine, or democracy).

Colourful post-it notes on a wall

So why does Scope care about innovation?

Because in our world we encounter lots of problems. For example how can we continue to provide good quality care in the face of huge public spending cuts; how can we help disabled people without speech to communicate effectively; and how can we bring down the extra costs of living that leave many disabled people in poverty?

We aren’t short of problems, but in many areas we are really short of good solutions. That’s why innovation is important and that’s why Scope is investing in it.

In future blogs I will tell you more about the projects we are working on and share some of the tools and inspiring projects we’ve identified that might help you make things in your area of work that little bit better.

But, for now I want to share some good news. In October three of Scope’s projects were shortlisted for international best practice awards from the Zero Project. Scope’s Connect to Control and Activities Unlimited projects and the Access to Elected Office Fund, which we worked with the Government Equalities Office to create, have all been recognised as best practice under the themes of living independently in the community and democratic participation.

They show us that Scope is already an innovator; in policy, in technology and in service delivery. We are looking forward to building on these great foundations.

I love you Natty – a sister’s gift of words

Hayley Goleniowska, founder of Downssideup tells how a loving note from one sister to another sowed the seed of a book about hope, love, facts, family and inclusion. 

We’re giving away a couple of the book this Christmas. Just reply to our tweet on Twitter for your chance to win.

Hayley GoleniowskyNearly eight years ago, I sat alone at my desk on a cold December evening. Flames danced in the fireplace as my heart felt heavy with uncertainty, shock, fear and worry.

As I typed the words ‘Down’s syndrome’ into my computer, I hoped to find a way of explaining to the two-year-old who was sleeping upstairs, why her new baby sister was not yet able to come home from hospital. I needed a way to make her understand why Mummy and Daddy were so worried. I needed a vehicle to start a discussion about why we are all different and how we all need extra support sometimes.

And, deep down, I too was looking for something positive and visual that would reassure me, would show me how our family life might shape up in the unknown years that lay ahead of us.

Outdated, depressing images jumped off my screen, but I shut them out and gravitated towards the most positive looking books I could find. I ordered them all. Some were outdated or contained incorrect information, and none seemed to contain the facts, written in plain English for children, with colourful photos. And oh, it was the photos I wanted to gaze at for hours, for they portrayed truly what was possible for our youngest daughter, with support.

As the years passed and our family found its way on a new path, the thought of that book we had searched for stuck in my head. I wasn’t sure how to approach creating it and I had absolutely no experience of publishing, so the seed of an idea was left to gently germinate.

A loving note

Mia and Natty holding I Love You Natty book

When my eldest daughter Mia was around six or seven years old, she was a very prolific note-writer. She would leave drawings and notes for us all around the house. One day I found a beautiful note for Natty, saying just how precious she was to Mia, and how her life wouldn’t be the same without her in it. It brought a lump to my throat and was a lightbulb moment for me. I realised here was the basis for the book. Mia’s words would form it’s core.

It took around two more years to complete the work. I asked Mia questions and her answers covered descriptions of Down’s syndrome, support services, heart surgery and even the annoying things all siblings do. We then chose family photos to accompany the words.

But what now? We almost had a book, I ran it through a Photobox website and it came back looking very sweet. Very plain and small but it was the first time I saw that we might actually have created what so many others might find useful. I sent digital copies to the main UK charities, asking for their advice and thoughts. They all loved it and agreed to be listed in the back cover.

I approached a couple of publishers, but our little book was too niche.I looked at printing on demand options, where one book is printed each time a customer buys it. That seemed like the way forward. Now we just had to get the document in the right format.

A friend and former colleague, Sarah, offered to help. The weeks passed and I thought we were close to our goal. I felt the nerves rise at the thought of sending such a personal work into the big wide world. One evening she arrived at my house with some large card tucked under her arm. It was the proof of the book, and what I saw brought me to tears.

Book cover of I Love You Natty

My friend Sarah had taken Mia’s book and painstakingly added in not only our photos but Mia’s drawings and beautiful designs too. The whole book looked nothing like the pale little initial idea I had had printed. It was a work of art, a book that children and babies of all ages were going to adore looking at, along with their parents too.

Of course now the thing was too elaborate to fit a Print on Demand standard template. And to print such a colourful book on demand would hike the price per unit to well over £10, nearer £12 and I was adamant that it should be as affordable as possible to all families. £5.99 was a limit I wasn’t willing to go above.

There was only one thing for it. We were going to have to bite the bullet and self publish! A local printer was found, ISBN numbers and copy write purchased and we were off. It all took around a year to do, but finally, in May this year, around 1,200 books arrived at our home. We were to ship them from our front room each time someone ordered one via Amazon.

We were astonished at the response, humbled. The feedback from parents and charities has been incredible. The books have been shipped to all corners of the globe and are now available from Waterstones online as well as Sainsbury’s in Cornwall.

Mia has been featured on TV and radio and in magazines and journals across the UK, and I Love You Natty: A Sibling’s Introduction to Down’s Syndrome is adored by children, teachers, parents, lecturers and medical professionals everywhere. It’s a book of hope, love, facts, family and inclusion.

We have covered our initial costs and have been able to donate over 100 copies and we are now saving up for a second print run. It’s been hard work, but worth the risk, sweat and tears. And I hope we have created something that will make a real difference. Thank you all for advising on, supporting, buying, reviewing and recommending I Love You Natty.

We are giving away a free copy of “I Love you Natty” this Christmas. For your chance to win just reply to our tweet on Twitter (terms and conditions).

To order a copy of I Love you Natty visit Amazon or Waterstones book shops. 

Disabled families hit hard by extra costs

Una Summerson, Head of Campaigns at Contact a Family, writes about why urgent action is needed from the Government and energy companies on extra costs for families with disabled children:

Contact a Family’s Counting the Costs campaign found a sharp rise in families with disabled children going without heating and food over the last 2 years. This is leading to ill health. With more than 3,500 responses from UK families with disabled children,

More than a quarter have extra costs of £300 or more every month relating to their child’s disability. The biggest costs being higher heating and utility bills.

Looking ahead, 60% of surveyed families see their financial situation worsening in the next year. Shaped by what thousands of families with disabled children say would help, the Counting the Costs campaign calls for urgent action by the UK government to stop this alarming trend. However, the campaign also recognises it’s not just about making sure the benefits and tax system adequately reflects the extra costs and barriers to work families face.

We are calling for energy companies take action to include all disabled children in their eligibility criteria for the Warm Home Discount Scheme. This scheme may lead to a rebate worth up to £140 on electricity bills. You can qualify if your energy provider is part of the scheme and:

  • you’re a pensioner who receives the guarantee credit of pension credit (the core group)
  • you fall into the ‘broader group’ of people that your energy supplier gives the discount to.

Each supplier has their own criteria for deciding who fits into the ‘broader group’. Some state that disabled children can be part of this ‘broader group’. Some don’t mention them at all, while others accept them if they also have a low income or child under 5. Confused, yes so are we!

Contact a Family’s helpline adviser Marian Gell says “It’s a minefield understanding the different eligible criteria for us let alone busy families. For example, British Gas use Universal Credit to determine eligibility. Since relatively few people are getting universal credit and it seems likely that many families will not be moved onto Universal Credit for several years. A family with a disabled child getting income support and child tax credit would not qualify according to these rules.”

The confusing and differing criteria, alongside the limited time families with disabled children means many often miss out on the scheme. We would therefore like to see a standard approach across all suppliers. Eligibility could be simply determined by receipt of child Disability Living Allowance. Ideally, we need disabled children not just to be recognised as part of the ‘broader group’ but to be part of the core group who receive the discount automatically and don’t have to apply.

Get involved with the campaign or find out about help with fuel bills on the Contact a Family website.

Twenty years on: Changing our name

Nigel Tuckett
Nigel Tuckett

Nigel Tuckett joined The Spastics Society on 4 January 1980 as a graphic designer. Previously Nigel had been working as the creative director in an advertising agency in Nigeria. He set up in a small office at the end of the corridor in the Society’s HQ in Park Crescent in London. It was the hot metal era of the mechanical typesetter, manual typewriter and Rotring pen – when cut and paste meant literally cut and paste! He headed the Creative Services department that brought in the new Scope brand in 1994.

Attitudes were changing

Public convenience poster
Public convenience poster

“Disabled people were starting to have more of a voice within the organisation, encouraged by the new chief executive Tim Yeo. The charity began to take a bolder stance in their advertising with a series of black-and-white posters that highlighted attitudes to disabled people. There was one showing a lift with a wheelchair user who couldn’t reach the top button. There was another which showed steps leading down to some ‘public conveniences’ which were neither public nor convenient to the wheelchair user pictured by them. The one that caused the most trouble portrayed the taxman as a bank robber with a stocking on his head and a sawn-off shotgun, stealing VAT from charities!

In the field of film, Nigel Evans was highlighting the shocking reality of long-stay ‘mental handicap’ hospitals where a boy was shown tied to a pillar in the middle of a ward.

Our name was holding us back

Despite the progressive advertising, what was holding The Spastics Society back was its name. It had become an embarrassment because of the derogatory use of the term. Companies who wanted to support us said they couldn’t because of our name. Also it was proving a difficult name to work with graphically – a three-word name plus an explanatory strap-line, “for People with Cerebral Palsy”!

Fundraisers reported feedback from potential supporters to the Executive Council. Alpha, a group of disabled people who acted as a sounding board for the organisation at that time, also told the charity that the name did not have confidence of most disabled people.

Most staff wanted the name to change but they had to stand at the back of the room, along with disabled people who also didn’t have the vote. The extraordinary general meeting voters were made up of local group representatives who were mostly parents.

It was nail-biting stuff. It was by no means certain that the local groups would vote for the change. The local groups (who were independent charities in their own right) were worried about the potential loss of income and of disappearing into obscurity.

What name?

After the vote, there was a small matter of the name. I was practically involved in meetings with branding consultants Interbrand. We produced a long list of names and then reduced them down to 15 and then just 5. We designed logos for the five alternatives and I presented them to Executive Council who then had to recommend a name to the membership. Cerebral Palsy Society was a front-runner, but there were concerns about people’s ability to say it. Capability was another possibility. Scope was just a word, wasn’t it?

There were quite a few sun motifs and also a few flags in the preliminary visuals. This was eventually echoed in the publicity stunt for the launch where the biggest flag in the world was unfurled by soldiers abseiling down the front of St Thomas’s Hospital in London, opposite the Houses of Parliament.

Practical considerations

After the name Scope and its design were decided on, our in-house Creative Services department took on the task of implementing the new identity. A key element of this was developing the sub-branding where all our departments and services were united under our one main logo. We sent a questionnaire to departmental managers, fundraising shops and local groups to find out what print requirements they would have. This included letterheads, business cards, compliment slips, till receipts, swing tickets (price labels), collection boxes, posters, point-of-sale materials, information leaflets and stickers, exhibition stands and signage for our schools, skills centres and regional offices. It was an exciting time chivvying people to find out what was needed, managing multiple checklists and meeting tight production deadlines. Under the direction of the shops’ marketing manager, Chris Wallace, shop fronts were all changed overnight in 300 sites – quite a logistical feat!

In my 28 years with Scope, I wish we had been able to change attitudes more but the name change and our distinctive new branding system helped to unify the organisation and to express what we stand for more clearly.

Read our ebook on Scope’s name change.

Find out more about Scope’s history.

The value of research – commission on extra costs considers evidence

Post from Minesh Patel, Policy and Research Assistant at Scope.

The Commission on Extra Costs is a year-long inquiry that will explore the extra costs faced by disabled people and families with disabled children in England and Wales.

In September, the Commission agreed to focus on the themes of empowering disabled people as consumers, efficient supply and effective market intervention in its approach to driving down extra costs. At the same time they also held an evidence-gathering roundtable that included spokespeople from consumer champions like RICA and experts in getting markets to work for disabled people, including Motability.

Chaired by Robin Hindle Fisher, yesterday Commissioners started narrowing down the areas that they would look at in more detail, and gave thought to the main areas of extra costs that the Commission should look at. In addition, the group began to consider what the solutions might look like in addressing these costs.

  • One of the categories discussed was clothing and bedding, where disabled people may face extra costs through purchasing specialist items, as well as through having to purchase a greater quantity of non-specialist items due to overuse or damage.
  • Energy was another area, which featured regularly in the personal stories of extra costs submitted to the Commission.
  • Other areas included specialist disability products for which disabled people are charged a premium, e.g. powered wheelchairs, and insurance, where a significant minority pay over the odds or are unable to access products that meet their needs.

The solutions will vary according to the area of extra costs, but the discussion touched upon ideas such as:

  • Promoting the significant size of the disabled consumer base as a way to encourage more competitors to enter and thus open up the disability market.
  • Collective purchasing initiatives for things such as energy to enable disabled people to obtain a lower price.
  • The role of digital inclusion and web accessibility to ensure that disabled people can access the best deals that are often online.

The Commission will continue to develop and flesh out recommendations for driving down extra costs. To support this process, a second evidence-gathering roundtable will be held in January that will look at what can be done to increase the availability of and reduce the cost of goods and services in key markets for disabled people.

A Disney Princess with Down’s Syndrome?

A petition asking for Disney to create an animated hero with Down’s syndrome has already collected more than 70,000 signatures. Yet, when we posted this news on Facebook , the response was … well, let’s say it was animated!

It seems to have divided opinions quite strongly, so we thought we’d publish some of your arguments for and against.

She shall go to the ball

It is time for the big media moguls to realise that just because a child may be slow in their development, this is no reason for them to be ignored. Also, I think having a character in a Disney movie would help other children understand that his/her friend is just as capable in every day life as they themselves – Catherine

A Disney Princess should be gentle, sweet, honest and beautiful, so yes girls with Down’s syndrome fit the essential criteria as well as anybody else – Tom Jamison, Editor Able Magazine

I’m not sure that Disney would do this without a load of self-congratulation (although I accept that it would draw attention) but if they did, and set an example, I’d love to see this happen – Gus 

As the parent of a young lady with Down’s Syndrome, I would encourage an increase in the visibility of people with disabilities on stage, screen and in the media, providing positive role models for our kids to aspire to. My girl loves a Disney princess just as much as the next kid, so get on with it animators! – Heidi 

I think we need to see more positive role models with disabilities so it becomes the norm, as it should do. Humans come in all shapes sizes colours and abilities so, so should TV characters. – Gemma

Put your wand away

This is political correctness gone mad. How preposterous. I have dear friends whose daughter has Downs. She is a happy, able confident individual who does not see herself as different to other people. Why then should Disney emphasise physical differences that individuals with the condition do not perceive? – David Bell

Is it really Disney’s job to teach kids about disability or is it ours? We should be teaching our children about accepting people for who they are, whether they are a Disney Princess or a little girl with Downs Syndrome who wants to be a princess. A character in a movie can’t do this. Only we can Kimberley 

If Disney portrayed the syndrome it would be mawkish and unrealistic probably. There are some fine actors and actresses out there with Down’s syndrome. It will not be long until we have Oscar winners with this condition winning on merit – Gavin

Not every person with learning disabilities has Downs Syndrome. As a mother of an adult daughter with learning disabilities, I often find it hard that a person with Down’s Syndrome is the representative of adults with learning disabilities – Margaret 

I have a high functioning autistic grandson. He tops his grade in every subject. We asked him to make a wish (as we were at a fountain) and he said,” I wish I had a friend.” He is isolated and teased at school. He could connect so well with a film about autism and the making of a friendship – Pam 

This is a case of misdirected energy. There have to be more useful things for people to be concerned about. Why would having a Disney princess with a disability help anyone have a better life? – Jo 

Find out more about the petition to create an animated hero with Down’s Syndrome and let us know what you think in the comments below.

Looking for disability-friendly story books? Check out our list of books with disabled characters.

Raising awareness of disability-related bullying

This week is national Anti-Bullying Week, and this year’s theme is disability-related bullying.

Research by the Institute for Education shows that disabled children are twice as likely as other children to experience persistent bullying. This can take many forms including physical abuse, name-calling and cyberbullying.

We’ve teamed up with Ambitious about Autism and the Anti-Bullying Alliance to highlight some of the issues faced by disabled children and young people.

Jack sitting on the edge of a fighting ring
Seventeen year-old MMA fighter Jack

Jack’s story

Jack is doing an apprenticeship and is also possibly the only disabled mixed martial arts fighter in the UK – but part of the reason he took up the sport was as relief from the bullying he experienced at school.

“It started in year eight. Words like ‘spastic’ were thrown around at me and those words got me into trouble at school, because I wouldn’t stand for it.

“It was hard. I don’t want any kids, disabled or not, to go through it, because it was horrible.”

Boxing training helped put things into perspective.

“Over the course of a couple of months, I realised that I just needed to chill out. There are going to be people in the world that are just idiots, they have no idea what they’re on about, they throw the word [spastic] round like it’s funny, and it’s not.

“But then, I’ve got friends and family who support me 100 percent, so I just forget about it.”

Rebecca’s story

Rebecca, a youth ambassador for Ambitious about Autism, says she faced bullying from her first years at primary school.

“I remember people saying mean things to me, and I was always left out of friendship groups because I acted differently,” she says.

“I moved schools several times to try and get away from the hate I received, but it followed me everywhere I went. On the school bus I got hit, pushed and verbally abused so I ended up having to walk, and even then the bullies followed me.

“Other students called me weird, loner, freak, fat and ugly, which was one of the hardest things. People say words don’t hurt but they do, and they can have a long-lasting negative effect.”

What to do

The Anti-Bullying Alliance has put together a list of top tips for parents who find out their child is being bullied. Here are a few of them:

  • Don’t panic. Stay calm, try to listen, and reassure them that you are there to support them, and things will get better once action is taken.
  • Try to establish the facts. It can be helpful to keep a diary of events to share with your child’s school or college.
  • Stress that the bullying is not their fault, and that you will not take any action without discussing it with them first.
  • Don’t encourage retaliation to bullying, such as violence. It’s important to avoid hitting or punching an abusive peer.
  • Discuss the situation with your child’s teacher or Head teacher – or the lead adult wherever the bullying is taking place. Every child has a right to a safe environment in which to learn and play. Schools should have a behaviour policy which sets out the measures that will be taken to prevent all forms of bullying between pupils.

And what if you’re a young person experiencing bullying? Rebecca says: “The most important advice I’d give to other young people with autism who are being bullied is to not let people bring you down.

“Don’t let them hurt you. Speak up and ensure your teachers and parents actually deal with it. It can be hard to confide in someone, but when you do it can release a lot of weight that may be on your shoulders. Bullies are just jealous of how awesome we are!”

Scope’s Trendsetters group, where young disabled people come together to discuss issues that are important to them, have created some information and resources on how to deal with bullying.                      

You can also support the anti-bullying campaign on social media by using #StopBullying4all.


Why we should give the Better Care Fund a chance

Today the National Audit Office published its verdict on the planning process for the first year of the Better Care Fund. Their report identified a gap between the scale of the Government’s ambitions and the quality of support originally offered to the NHS and local authorities.

While a lot of the coverage highlighted evidence that the Fund may not deliver the predicted savings for the NHS, the report also says it is a pioneering idea that will improve health and care services.

For Scope, the Better Care Fund can transform care for older and disabled people so they can live more independently.

The Fund is a crucial step in moving away from a system of costly acute care that only kicks in when people reach crisis point and towards preventative care close to home. It lays the foundations of an integrated care system and provides a real incentive for the NHS and social care services to work together.

A more integrated health and social care system would have significant benefits for disabled people, including:

  • Eliminating disputes over who should pay for care needs and fewer people falling between the cracks of health and social care funding
  • More choice and control
  • A more preventative care system which offers support before people reach crisis point.

If it’s successful the Fund will drive cultural change across the whole health and care system: that simply isn’t something that can happen overnight or before the plans have been implemented.

Of course the Fund can be improved in future.

So far the Government and local areas have mostly focused on joining up care for older people. That shows in the national guidance, performance measures and local plans for the first year of the Fund.

In future it makes financial sense for the Fund to have a much greater focus on the well-being and independence of disabled adults:

  • Disabled people under the age of 65 are one third of social care users
  • Over 50% of existing social care expenditure is spent on social care for working-age disabled people.
  • The number of working-age disabled people needing social care is projected to rise by 9.2% between 2010 and 2020.

It’s also crucial to remember that the Fund won’t help the growing number of disabled people with care needs who are not eligible for social care. Scope has long campaigned for the national eligibility threshold to be set at a lower level than proposed under the final Care Act regulations.

Without a lower eligibility threshold, disabled people with care needs will still be left without the vital support they need to live independently.

An integrated health and social care system cannot solve this problem on its own: the Better Care Fund must also be accompanied by a long-term investment in social care so that everyone who needs care gets it.