Tag Archives: Government

“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.

Will you be a Disability Gamechanger?

Today, Scope launches a new campaign to tackle disability inequality head on. Head of Policy, Campaigns and Public Affairs, James Taylor, tells us why it’s an issue we all need to get behind.

“Negative attitudes, poor access to support or transport, limited opportunities for work.

Disabled people tell us that these things matter. They lead to discrimination, to prejudice and to being seen as an afterthought.”

“The things that people say to you never go away. There have been times where bad attitudes have made me ask, what’s the point?” – Marie

“People with invisible impairments still struggle for people to ‘believe’ their condition is real.

On buses, trains and planes we’re often denied equal service and equal treatment.

When we want to go on a night out, the disabled toilet is often an extra storage cupboard, because we’re not thought of as customers.

Hear from some of the storytellers in this film, highlighting the barriers disabled people face in their day-to-day lives.”

The scale of the issue

“Our latest research shows how many disabled people feel and experience this.

We spoke to disabled people right across Britain to find out about their day-to-day lives – what makes them happy, what angers or frustrates them and what they want to get out of life.

We wanted to understand what equality means to disabled people today, and we wanted to start from what disabled people think and feel, and how important independence is to them.

Overwhelmingly disabled people told us they want to be independent, to have confidence and to be connected through friends, family, colleagues and communities.

Yet for too many disabled people this isn’t the case.”

“I’ve been excluded from social situations or activities due to my condition. People make assumptions about what I am able to do. It’s really frustrating.” – Shani

“Earlier this year, Opinium polled 2,000 disabled adults for Scope and found:

  • 49 per cent of disabled people said they feel excluded by society
  • Just 23 per cent said they felt valued by society
  • On top of this, only 42 per cent of disabled people believe the   UK is a good place for disabled people

These statistics make it obvious that the fight for disability equality is far from over.

Throughout the last century we’ve seen action that has led to dramatic changes in our society, but our research demonstrates that there is still a way to go until all disabled people are able to live the lives they choose free from discrimination and low expectations.

At Scope we want to change this.

Whilst we might have protection in law, at Scope we know there is still a way to go until until all disabled people can enjoy equality.”

You can read more about the research in our report, ‘Independent, Confident, Connected’.

Be a Disability Gamechanger

“We have launched our new campaign calling on all those who want to work with us to show their support for disability equality. It doesn’t matter if you’re a bus driver, a politician, a teacher or an employer. You can all make a difference.”

We can’t do it alone. We know that we are stronger as a movement, as a community and as a force for change, when we work together.

If you, like us, want to end this inequality, join our campaign today.

Tackling the price tag of disability

Life costs more if you’re disabled.

Our new report, The disability price tag, reveals that disabled people are forced to pay more for everyday essentials.   

From expensive items of equipment or adapted cutlery, to higher energy bills and costly insurance premiums, disabled people face extra costs across all areas of life.

Read more about our research and how we can tackle the price tag of disability. 

The financial penalty of disability

Four years ago we published research into disabled people’s extra costs and began campaigning for change.

Four years on, disabled people still face a substantial financial penalty.

Our latest research finds that disabled people face extra costs of £570 a month related to their impairment or condition. For one in five disabled people, these costs amount to over £1,000 a month.

This is on top of welfare payments such as Personal Independence Payment (PIP) designed to help meet these costs.

This disability price tag leaves disabled people with less money to spend on other things, and unable to afford the same standard of living as non-disabled people.

After housing costs have been met, almost half (49 per cent) of disabled people’s remaining income is spent on disability-related costs.

Even for disabled people in work, average monthly extra costs are £492. And across the country costs vary substantially, from an average of £482 in the East of England to an average of £632 in Scotland.

What are the types of extra costs disabled people face?

Disabled people we talk to tell us that they face extra costs across many areas of their lives. These costs broadly fall into three categories:

  • Paying for specialised goods, like a wheelchair, a hoist or adapted cutlery
  • Having to spend more on everyday things, like heating or items of clothing
  • Paying over the odds for things, like insurance or accessible taxis

Marie is just one of many disabled people faced with extra costs. She uses a specially adapted wheelchair which needs replacing, but this would cost her £9,000. Marie and her husband also recently spent around £4000 on a specially adapted kitchen.

The extra costs of disability mean disabled people are less able to build financial resilience. They make it harder for disabled people to get a job, pay into savings and pensions, and participate fully in society.

What needs to change?

We cannot afford to ignore this problem.

Government, regulators and businesses all need to play a role in tackling the extra costs of disability.

We need action to ensure disabled people have the right support to help with extra costs. PIP helps with some of the additional costs of disability – but too often the PIP assessment fails to capture the extra costs many disabled people face.

We want to see an overhaul of the assessment so that disabled people get the support they need to help meet disability-related costs.

We also need to tackle the drivers of extra costs. We know disabled people are often underserved as consumers, leading to increased costs for essential goods and services like energy and insurance.

Today we are calling on businesses and regulators to set out what they will do to ensure disabled consumers are not paying over the odds.

What will we be doing next 

We will be reporting annually on disabled people’s extra costs to assess any changes over time. We will also be publishing research later on this year into the additional costs faced by families of disabled children.

What are your experiences of #ExtraCosts. Share your experiences in our extra costs discussion on the community.

Tackling the additional energy costs faced by disabled people

Winter brings two certainties – lower temperatures and higher energy costs. This is particularly challenging for disabled people, who often consume more energy because of their impairment or condition.

In recent weeks, Ofgem – the energy regulator – and the Government have both announced short-term proposals to help tackle high energy costs. Whilst these are welcome, Scope is calling for more targeted reforms to support disabled people in the energy market.

Below we look at these changes in more detail and what they could mean for disabled people.

Disabled people’s experiences as energy consumers

Disabled people face a range of disability-related costs, amounting to an average of £550 a month, making it harder for disabled people to get into work, access education and training opportunities and participate in society fully.

Energy represents a significant type of extra cost for disabled people. In an independent inquiry into extra costs, The Extra Costs Commission, energy was the third most cited area of additional cost by disabled people.

Households with a disabled person spend on average over £3,000 a year on energy, compared to the £1,345 an average UK household spends. It is no surprise then that more than a quarter (29 per cent) of disabled people have struggled to pay their energy bills in the past year.

What changes have been announced?

In October, Ofgem announced a proposal to extend the Vulnerable Customer Safeguard Tariff. Currently, this limits the amount that  customers who are on a prepayment meter will pay for their energy bills. The extension would cover an additional one million customers who receive the Warm Homes Discount, which is a one-off discount for certain customers on their energy bills. This change would take effect from February 2018.

Ofgem has acknowledged that this approach will not support all groups with high energy costs, including many disabled people. It is considering what further steps it can take to support a wider pool of customers.

Alongside this, the Government has published its Draft Domestic Gas and Electricity (Tariff Cap) Bill. This would put an absolute cap on certain energy tariffs, including standard variable tariffs and default tariffs, which have variable prices that go up and down with the market.

The cap would be set by Ofgem and would be temporary in nature. It would last until the end of 2020, although it may be extended for a year on up to three occasions, depending on whether the market becomes more competitive.

The Business, Energy and Industrial Strategy Select Committee has been reviewing the Bill before it is introduced in Parliament. We have provided both written and oral evidence to the Committee, and we want to ensure that there is a clear process for evaluating how these changes will impact disabled people.

 What needs to change?

The proposed actions from Ofgem and the Government offer some short-term relief to some disabled people. However, long-term reforms are needed to specifically address the additional energy costs many disabled people face.

One area of focus needs to be on ensuring disabled people are accessing the support to which they are entitled. For instance, research by the Extra Costs Commission found that 40 per cent of disabled people were unfamiliar with the Warm Home Discount, meaning many individuals could be missing out on this support with their energy bills. We want Ofgem and energy suppliers to work together to increase awareness of these types of support.

We also believe the eligibility criteria for the Warm Home Discount is not as effectively targeted as it could be. We want the Government to review the criteria so that it captures a greater number of disabled people who face additional energy costs.

Over the past couple of weeks, we have been carrying out focus groups to deepen our understanding of the experiences of disabled people in the energy market. This will help us develop recommendations for tackling the additional energy costs faced by many disabled people, but it is clear that Government, Ofgem and energy suppliers all have a part to play.

Tell us about your experiences

Have you faced high energy costs because of your impairment or condition? If you would like to share your experiences, please contact: stories@scope.org.uk.

You can also visit Scope’s website for more information on support with your energy bills.

I’m a disabled person and I’ve contributed to the economy for 43 years – the Chancellor’s comments feel personal

Graham is Scope’s Engagement and Participation Manager. As a disabled person himself, with three disabled children, he had a strong reaction to Philip Hammond’s comments about productivity and disabled people. In this blog, “after a full day to calm down and sleep on it”, he responds and shares some other reactions.

It’s not based on any evidence

Firstly, as Scope colleagues and many others have said on social media, this statement hugely undermines the Government’s commitment to getting one million disabled people into work.

This wasn’t an off-the-cuff remark by Mr Hammond during an after-dinner speech – it was made in a formal Parliamentary committee meeting and broadcast to the world. So, apart from the slap in the face to working disabled people, he is contradicting Government policy.

His statement is not based on any evidence that anyone knows of. I’m extremely pleased that Scope has called out both the Chancellor and the Prime Minister on this slight.

I’ve contributed to the UK economy for over 43 years

Secondly, it feels quite personal. I’ve had my impairment since I was  a child and have worked continuously (apart from study breaks) since age 17 when I joined a press agency in London as a trainee journalist.

I’ve since worked as mental health support worker, probation officer, supported housing officer, bookseller, policy wonk and project manager. During this time I haven’t avoided paying my income tax and have contributed to the UK’s economy for over 43 years. So being labelled as a problem for  productivity would be a joke if it wasn’t so serious.

I worry for the next generation of disabled people, including my son

Thirdly, I worry for the next generation of disabled people. My youngest son is leaving university in a year or so, and my daughter has worked and has paid taxes for several years.

Despite my professional and personal campaigning on the inclusion of disabled people for 20 years or more, it is very clear we have a whole lot more to do if senior politicians still see us as drains on the economy and uninvestable. We need to be seen as active, empowered citizens.

And in addition to this novel stance – being seen as non-productive – the framing of disabled people as inherently “vulnerable” is another barrier that needs dismantling. I’m confident that Scope will continue to challenge received and dated ideas that diminish disabled people, and really promote everyday equality in all its senses.

It’s not just me who’s outraged, here’s what other people have told Scope

Laura via email:Laura walking with her guide dog

“I am disgusted that a man in his position could say such a thing. We have enough issues to face daily without comments like that.

Every day I make a contribution to society along with so many others. These were very hurtful comments to read as I was getting up, getting ready and travelling to work!

I am pleased to see disabled people and organisations have pulled together today.”

 

Liam via Twitter:

“I just felt disappointed and confused, to be honest.Liam wearing radio headset, smiling at the camera

Aside from being derogatory, it was also a bizarre statement to make when the disability employment gap remains stagnant.”

 

 

Shona via Twitter:

“It’s just reinforcing what we already know, this government thinks disabled people are a problem.Shona in her wheelchair in front of a fence and a park

What is even scarier is the government knows they can get away with saying things like that because they’ve created a society that sees disabled people as lesser.”

 

If you want to read more reactions to the Chancellor’s damaging and inaccurate comments, check out Scope’s Twitter moment. 

Scope storytellers also shared their views in the media:

Scope has written to the Prime Minister asking her to clarify her position and called on the Chancellor to withdraw his comments. We’ve also explained why his comments are damaging and inaccurate.

What are your thoughts on the Chancellor’s comments. Share what you think on Twitter or Facebook using the #EverydayEquality.

What does the Government’s plan to tackle disability employment mean for disabled people?

Today the Government set out its plan to support more disabled people to enter and stay in work, with a laudable ambition of getting a million more disabled people into work over the next ten years. The Prime Minister said she is “committed to tackling the injustices facing disabled people who want to work, so that everyone can go as far as their talents will take them.”

This follows on from a government consultation last year which looked at ways to improve support for disabled people both in and out of work.

We’ve taken a closer look at the Government’s plan published today and what it could mean for disabled people.

At Scope, we know that there are one million disabled people who can and want to work. Yet too many face barriers to entering, staying and progressing in work.

This is a huge waste of disabled people’s talent and potential, which is why we’ve been campaigning over the last four years to convince the Government to address the challenges faced by disabled job-seekers and employees.

Illustration of a CV with a tick next to it. Text: one million disabled people can and want to work
One million disabled can and want to work

The Government today has announced a series of measures to increase disability employment and change the workplace for disabled people. These include trials that will look at ways to support disabled people to move into employment and proposals to support disabled people to stay in work. There is also a greater focus on the role of employers in supporting disabled people in the workplace.

Last year we gathered many of your views and experiences of work and the workplace. It’s positive to see the Government’s ambition, but it’s vital this plan leads to swift and meaningful action if they are to meet their pledge to get one million more disabled people into employment over the next ten years.

Work Capability Assessment

The Work Capability Assessment (WCA) is the gateway to a higher rate of benefit for disabled people whilst out of work. We’ve long been calling for the Government to replace the WCA with a new assessment which more accurately recognises the barriers disabled people face to entering and staying in work.

The Government has said it will be exploring ways to improve disabled people’s experiences of the assessment process and provide more personalised support.

Whilst this is a step in the right direction, this does not go far enough. We need to see a complete overhaul of the assessment that accurately identifies the back-to-work support disabled people need. It is important that any assessment for financial support is separate from any conversations about support to move into work.

Employment support

The Government have set out a series of proposals for testing new ways of offering support to disabled people to take up employment.

This includes exploring the idea of personal budgets for employment support and testing out an offer of voluntary employment support for people in the support group of Employment and Support Allowance.

We think these ideas have the potential to help disabled people get the tailored support they need to get into work. However, it’s vital that any engagement with employment support is voluntary and has no impact on the financial support an individual receives.

Employers Driving Change

The Government has also announced a range of measures to improve the workplace and highlight the role employers play in tackling disability unemployment. This includes a focus on getting large employers to voluntary publish information on their disabled employees, as well as a greater focus on providing employers with information and advice

We think this is positive news. Our research shows that 48 per cent of disabled people have worried about sharing information about their impairment or condition with an employer, demonstrating that we need to do more to create inclusive workplaces for disabled people.

A graphic showing statistics from Scope research. It reads "48 percent of disabled people have worried about sharing information about their impairment or condition with an employer"
48 percent of disabled people have worried about sharing information about their impairment or condition with an employer

 

This change will help to give employers a better sense of areas where they’re doing well at recruiting and retraining disabled staff, and areas they need to look at where disabled people are underrepresented.

Access to Work

There are also a range of measures to improve the Access to Work scheme. This provides essential resources and support that disabled people need to do their jobs.

It can make a huge difference to working disabled people, but we know that disabled people can sometimes face issues with the scheme, such as delays in getting support, or loss of their package of support if they change role within the same organisation.

This can make it harder for disabled people to stay in their jobs. We know that for every 100 disabled people moving into work, 114 leave, meaning its critical disabled people have the right support once in employment.

The Government has proposed changes to improve the delivery of the scheme, which include investing in its Mental Health Support Service and making it easier for disabled people to take their awards with them when they change jobs. However, it is crucial the Government invests in Access to Work so that a greater number of disabled people can benefit from the scheme to help them stay in work.

Statutory Sick Pay

There is also a commitment to consult on Statutory Sick Pay (SSP). This is money paid by an employer to their employee while they are off sick, either instead of, or after, occupational sick pay.

The Government’s proposal would help to increase disabled people’s income during a phased return to work after a period of sickness absence. However, we want to see the Government go further and reform SSP so that disabled people have greater flexibility in managing fluctuations in their condition whilst at work.

What next?

Today’s publication includes a range of measures that could help tackle the disability employment gap and improve the workplace for disabled people. It’s critical that disabled people’s experiences are at the heart of any changes.

The Government now needs to build on this plan and ensure that it quickly leads to real change for disabled people.

Scope will be continuing to campaign on disability employment so that more disabled people can enter, stay and progress in work.

As part of this, Scope has launched its Work With Me campaign with Virgin Media to get government, employers and the public to tackle the issues faced by disabled job-seekers and employees.    

Find out more about our campaign and how you can get involved.

Let’s talk: New research into disabled people’s experiences of talking about disability at work

Today Scope has published new research which looks at disabled people’s experiences of talking about disability at work.

We carried out a series of interviews with disabled people who are working. Some of those who took part had talked to their employer and colleagues about their impairment or condition, some hadn’t spoken about disability at work at all and others had shared some information with some people at work.

Below is a summary of our findings and our recommendations to employers and government to improve conversations about disability at work

Why is this important?

For some disabled people, talking about disability at work means they can start conversations about their support needs and how these may change over time. This can often be challenging for disabled people – two fifths of respondents in our research who asked for adjustments at work have felt uncomfortable doing this.

A graphic which shows a stat from Scope research. It reads "Two fifths of respondents who asked for adjustments at work have felt uncomfortable doing this"
Two fifths of respondents who asked for adjustments at work have felt uncomfortable doing this

In other cases, conversations between disabled colleagues can help create an environment where more people feel comfortable sharing information about their own impairment or condition at work.

Sharing information also allows employers to gather information about the experiences of disabled staff and helps them to develop a picture of how effectively they are recruiting, retaining and developing a diverse workforce.

By establishing an environment where disabled staff feel able to start conversations about disability, employers will be better placed to support their staff to reach their potential.

It’s important to recognise that some disabled people will have more choice over if, when and with whom they share information than others. However, this research has found that even among people who have a visible impairment, conversations about this and any support needs they have can have a significant impact on experiences at work.

Barriers to talking about disability

As many as 48 per cent of disabled people worry about sharing information about their impairment or condition with their employer. Some people who took part in the research had worried that telling their employer they are disabled may put their job opportunities at risk.

A graphic showing statistics from Scope research. It reads "48 percent of disabled people have worried about sharing information about their impairment or condition with an employer"
48 percent of disabled people have worried about sharing information about their impairment or condition with an employer

Others were concerned about how their manager or colleagues would react, and wanted to avoid negative comments, personal questions or pity.

Read more about Gladys’ experiences of talking about disability at work.

What leads to sharing information?

Many disabled people who took part in the project preferred to have conversations about disability on their own terms than responding to questions.

This included choosing who to tell, what information they shared  and when they shared it.

Positive and negative experiences of sharing information

Some disabled people had negative experiences when they talked about their impairment or condition at work.

These included feeling they hadn’t been listened to, or feeling as though they were being singled out as a result of the information they had shared.

For others, talking about disability had been more positive, and had led to them getting support to carry out their role.

For many disabled people who took part in the project, a positive aspect of talking about disability was that it opened up new conversations with disabled colleagues.

What needs to change?

We want to see employers review the way they gather information about their disabled staff. It is vital they take steps to make sure line managers know how to respond and offer support when staff start conversations about disability.

We’re also calling on the Government to improve the support available to working disabled people as well as employers. We want to see the role of the Equality and Human Rights Commission strengthened so that employers who discriminate can be held to account.

It is important that disabled people are able to make informed decisions about if, when and how they talk disability at work. Based on the experiences of the people we spoke to, we’ve outlined ideas in our report for disabled people to consider when sharing information about their impairment or condition. 

Read more about our findings and recommendations and show your support on social media using #EverydayEquality

How can the next government improve disabled people’s work opportunities?

We want the next government to deliver Everyday Equality with disabled people. It must put the interests of disabled people at the heart of its agenda, and deliver meaningful change over the next five years to tackle the barriers that prevent disabled people from participating fully in society.

One area where disabled people face challenges is employment. We know that many disabled people want to work and are pushing hard to find jobs, but many continue to face huge barriers. Disabled people are twice as likely to be unemployed as non-disabled people. 

That’s why we  are calling on the next government to improve disabled people’s work opportunities.

Halving the disability employment gap

The latest labour force stats show that 49 per cent of disabled people are in work compared to 80 per cent of non-disabled people. This difference is known as the disability employment gap, which has stood at over 30 percentage points for over a decade.

The recent Green Paper on Work, Health and Disability was a useful opportunity to begin to identify how to tackle the barriers disabled people face to entering, staying and progressing in work. It is vital that the next government builds upon the feedback and ideas shared through this consultation.

Text on infographic reads: Disabled people are almost twice as likely to be unemployed as non-disabled people

A failure to address this is a missed opportunity. Our research shows that a 10 percentage point rise in the employment rate among working-age disabled people would generate £12 billion for the Exchequer by 2030 and see an increase in Gross Domestic Product of £45 billion.

We want the next government to halve the disability employment gap, and set out how it will measure progress towards this goal through public reporting.

Improving support for disabled people both in and out of work

Too often, disabled people who want to work don’t get the right support. This means that disabled people either struggle to move into employment, or else once in work, risk losing their job.

Reform is needed if we are to see a meaningful increase in disability employment.

That’s why we want the next government to improve the support that disabled people receive in and out of work.

This needs to include:

  • Reform of the Work Capability Assessment: The current assessment for out-of-work benefit for disabled people is not fit for purpose. We want to see a new assessment that takes a “real world” approach to identifying the range of employment barriers a disabled person faces, and the support needed to overcome these.
  • End Jobcentre requirements: Some disabled people who don’t meet Jobcentre requirements to prepare or look for work face sanctions. These only make life harder for disabled people, which is why we want to see an end to benefit sanctions.
  • Expand Access to Work: The next government should expand this scheme so that more disabled people can access the specialist support and resources they need to do their jobs and stay in work.
  • Reform of statutory sick pay: We want to see changes to the way sick pay is paid, so that disabled people have more flexibility in managing their impairment or condition whilst at work, or when returning to work after a period of absence.

Providing better employment guidance and support to young disabled people

Too many young disabled people are not getting the guidance and support they need to move into and prepare for work. For instance, in our research with young disabled social care users, 60 per cent of respondents said they are not currently receiving the information and advice they want about employment.

We want the next government to improve the provision of careers advice, work experience, and opportunities for apprenticeships for young disabled people.

Tell us what would help to improve your work opportunities

You can read more about our priorities for the next government and how you can register to vote in this election.

What would help you to find and stay in employment? Email the stories team and tell us your experience – stories@scope.org.uk 

You can also join the conversation on social media by using the hashtag #EverydayEquality.

How can the next government ensure disabled people have the support to live independently?

We want the next government to deliver Everyday Equality with disabled people. It must put the interests of disabled people at the heart of its agenda, and deliver meaningful change over the next five years to tackle the barriers that prevent disabled people from participating fully in society.

A key part of Everyday Equality is having the right support to live the life of your own choosing. However, there are still a range of barriers that make this difficult for disabled people, from inadequate social care provision, to inaccessible physical environments and digital exclusion.

That’s why we are calling on the next government to ensure disabled people have the support to live independently.

Increasing investment in social care

Social care is an essential public service that supports disabled people to get up, get dressed and get out of the house.

Around a third of social care users in England are working-age disabled people. However, we know that more than half are not receiving the right care to support them to live independently.

Text says, Over half of disabled people using social care can't get the support they need to live independently

This means not enough disabled care users are getting the support they need to live independently, work, volunteer, and live full, meaningful lives.

In order to ensure disabled people are getting the right level of support, it is crucial that the issue of inadequate funding in social care is addressed. Whilst we have seen some recent investment, the funding gap in our social care system is estimated to rise to £2.8 billion by 2020.

That’s why we are calling on the next government to increase investment in social care so that disabled people of all ages are able to access the support they need to live independent lives.

Improving access to everyday services  

Living independently means being to have choice and control over your life, whether as a consumer, whilst travelling, or whilst socialising.

However, we know that disabled people often face barriers in accessing day-to-day markets, services and amenities.

For instance, less than a quarter of disabled people think the accessibility of pubs, restaurants, clubs and shops has improved since 2012. In the digital world, 25 per cent of disabled adults have never used the internet compared to 6 per cent of non-disabled adults, often due to a lack of digital skills or inaccessible websites. This means disabled people are more likely to miss out on the best deals and offers which are commonly found online.

We want the next government to ensure equal access to goods and services for disabled people by increasing compliance with the Equality Act, and tackling the digital divide between disabled people and non-disabled people.

Tell us what living independently means to you  

You can read more about our priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk 

You can also join the conversation on social media by using the hashtag #EverydayEquality.

Paying extra to live my life

Jean has Ehlers-Danlos syndrome which means her joints dislocate easily and she is in a lot of pain. In this blog she talks about her experience of extra costs and shares her hopes for the next government to bring about everyday equality for disabled people by 2022.

I came home from work one day, fell over, was taken to hospital because I couldn’t get back up. I came out of hospital a week later in a wheelchair. I was diagnosed with Ehlers-Danlos syndrome several years ago. Since then I’ve been trying to get on and live my life, but I face a huge range of extra costs which makes things harder than they should be.

The things I need to live my life

Many of them aren’t obvious. Things like adapted cutlery and kitchen equipment are vastly more expensive than an ordinary set. I’m supposed to have specialist knives to help me with preparing veg and things like that – with the handle at a 45 degree angle – but they are about £15 a blade. They are not covered by the NHS, you have to pay for them yourself, and we can’t afford them.

I’m a careful budgeter, tracking what I spend down to the penny, but I can’t scrimp on the things I needs or it can take a big toll. I have to eat a particular diet because my condition affects my gastric system, and if I am not very careful with what I eat then my gastric system will start going downhill. Our shopping bill comes to about £120 a week.

We had a situation a couple of years ago where we were living on essentially £50 a week, so we were buying the really, really cheap basic stuff. We managed to make sure we had enough to fill us but I was really ill. I was bed-bound for a year because I was having so many problems with my stomach and lower back and with pain in my hips and my pelvis. I couldn’t move.

I have all kinds of other costs. Some are really big. For example, I get a basic wheelchair provided for me, but I really need an ergonomic one to reduce stress on my joints, which is very expensive. You expect that any equipment you need you’d get from the NHS (you get for free), but you only get the very basics. It’s around £1,200 to £1,500 to get a wheelchair that suits my needs, and we couldn’t afford that.

Jean sitting at a desk with an open laptop in front of her
Jean struggles to pay for essential equipment that she needs to live

Everyday equality by 2022

People think that because you are disabled you shouldn’t be allowed to have a normal life – to do the same things that they do. I’m just trying to have a normal life.

My future vision for disability equality would be that all buildings and public spaces are built with disability in mind from the outset. Anyone can use accessible facilities but disabled people cannot use all facilities.

I would also like attitudes to change so that disability was seen in the same way as race, sex or gender – just an everyday difference rather than an inconvenience that has to be managed by companies, corporations and institutions.

I want disabled people to be involved (not represented but representing themselves) at all levels of responsibility. The old adage of “nothing about us without us” still isn’t utilised enough in my opinion.

Tell us what being financially secure means to you

Scope is calling on the next government to improve disabled people’s financial security.

You can read more about our priorities for the next government and how you can register to vote in this election.

What does being financially secure mean to you? Email the stories team at Scope and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality