Tag Archives: employment

Let’s stop disabled people being labelled “unemployable”

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

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

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

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

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

Misunderstanding and prejudice

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

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

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

Breaking down barriers

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

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

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

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

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

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

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

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

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

Not all employers think flexibly

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

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

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

Employers’ mindsets need to change

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

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

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

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

The Budget 2017 – What does it mean for disabled people?

The Chancellor Philip Hammond has delivered the Spring Budget today. In this blog we look at the impact the budget will have on disabled people across the country. 

Ahead of today we were calling for sustainable investment in social care, a reversal of the reduction in financial support for those in the Employment and Support Allowance Work Related Activity Group (ESA WRAG) and for Government to think again on changes to Personal Independence Payments (PIP).

The Budget contained some positive news for disabled people on social care yet we were disappointed by the Government’s failure to mention, let alone reconsider, upcoming changes to disability benefits.

Social care

Following calls from disabled people, charities, MPs and local councils, the Government has provided a cash injection of £2 billion for social care over the next three years.

We hope this is good news for the 400,000 working age disabled people who rely on social care for assistance with everyday tasks such as cooking and getting dressed.

We were really disappointed when there was no further funding announced for social care in the Autumn Statement and so we are pleased that the Government has listened to calls for urgent funding.

The care system has been under immense financial strain over the past few years, with the adult social care budget reduced by £4.6 billion since 2010. £1 billion of new funding will be available this year, yet the King’s Fund has predicted the funding gap for this period will be nearly twice that at £1.9 billion.

The Government also today announced a Green Paper on social care, we will be campaigning to make sure this consultation and following action focuses on how the social care system will provide the support and outcomes important to disabled people.

Financial security

PIP is intended to help disabled people cover some of the extra costs they face as a result of their disability, on average, £550 a month. Therefore we think it is vital PIP focuses on the extra costs disabled people actually face, and not their impairment or condition. We are concerned about the Government’s move to tighten up access to PIP and have been speaking to Ministers and MPs about our concerns since the legislation was announced.

We wanted to see the Government use the Budget to reconsider this change and take the opportunity to review the PIP assessment process. Our helpline has seen a 542 per cent increase in calls relating to PIP over the last year, with many people successfully appealing their original decision.

We are disappointed the Government intends to go ahead with these changes, and will keep raising our concerns with Government.

Employment

The Government has made a welcome commitment to halve the disability employment gap and we’ve been working hard over the last year to set out the reforms needed for disabled people both in and out of work to help make this goal a reality.

However, next month new claimants in the ESA WRAG will see a £30 a week reduction in their financial support. We don’t think that this will help disabled people find work and have been campaigning against these changes since they were first announced. Disabled people are already less financially resilient than non-disabled people, with an average of £108,000 fewer savings and assets. A reduction in financial support could end up creating an additional barrier to work.

We are concerned the Government are pressing ahead with this reduction. Having missed the opportunity to halt the reduction in the Budget, we, alongside other disability charities, will continue to push for this to happen before the change takes effect.

The Prime Minister has set out her vision of a country that works for everyone, yet following this Budget there is much more that needs to be done to include specific needs of disabled people in that vision. We’ll continue campaigning on all of these issues and more to make this case.

Reform is needed to halve the disability employment gap

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

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

Improving out-of-work support

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

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

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

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

Supporting disabled people in work

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

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

Working with employers to drive change

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

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

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

Next steps following the Green Paper

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

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

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

Why we need to see changes in support for disabled people in work

Today we are publishing the findings of a poll which asked disabled people about their experiences of looking for work and being in employment. 58 per cent of disabled people have felt at risk of losing their job because of their impairment.

Tomorrow new statistics will be published that will unveil the size of the disability employment gap. This is the difference between the employment rate of disabled people and non-disabled people, which has remained at around 30 percentage points for over a decade.

The Green Paper on Work, Health and Disability was launched in October and outlines the Government’s thinking about the future of employment support. The accompanying consultation provides an excellent opportunity to feedback on the document and shape future Government policy but closes at the end of the week.

New findings on disabled people’s experiences in the workplace

We surveyed over 200 working-age disabled adults in employment and uncovered that 58 per cent of disabled people have felt at risk of losing their job because of their impairment. To address this, we would like to see Government introduce a new flexible approach towards sick leave and the Equality and Human Rights Commission publish a new code of practice on workplace adjustments.

Text reads: Fifty eight percent of disabled people have felt at risk of losing their job because of their disability
Source: Scope polling of 216 working age disabled adults in employment in England, December 2016

Our research also unearthed how one in five disabled people surveyed (18 per cent) had requested support or an adjustment but their employer didn’t provide them. Employers are legally required to try and make adjustments to support disabled people in the workplace. One in four disabled people (24 per cent) say their current employer does not support them to do their job.

Scope would like to see schemes which support disabled people in work, such as Access to Work, better funded and publicised so that employees and employers are more aware of their benefits.

Workplace bullying or harassment

Text reads: 53 per cent of disabled people have experienced bullying or harassment at work
Source: Scope polling of 216 working age disabled adults in employment in England, December 2016

Our research revealed that 53 per cent of disabled people have experienced bullying or harassment at work, 21 per cent of disabled people had been bullied by colleagues and 27 per cent had experienced bullying from their employer. One in five (21 per cent) go as far as not disclosing their disability to employers, whilst one in eight (13 per cent) of those disabled people we spoke to felt they had been overlooked for a promotion.

Government are rightly focussed on removing barriers to get more disabled people into work, but the barriers that prevent people from progressing and advancing their careers, once in work, must also be addressed. The Green Paper highlights the importance of working closer with employers and changing attitudes towards disability, so it’s important the Government improve conditions for disabled people in the workplace.

Government consultation on disability employment 

Scope want to see the Government deliver on its commitment to halve the disability employment gap and to deliver a strategy that tackles the barriers disabled people face to entering, staying and progressing in work.

The Green Paper is an opportunity for disabled people to share experiences of being in and out of work and feedback on the Government’s plans. At Scope, we think there remains a huge amount of work to be done to tackle the barriers disabled people face entering and staying in work. It’s vital that the whole Government now listens to disabled people’s views on how to do this.

Read more about how you can respond to the Green Paper consultation

Nothing will change until disabled people are included in identifying the barriers they face getting into work

Jane Hatton runs Evenbreak, an award-winning not-for-profit job board run by and for disabled people. It helps inclusive employers who understand the benefits of employing disabled people to access that talent pool. In this guest post, Jane explains some of her concerns about the government’s plans for “Improving Lives” with its latest consultation on disabled people and employment

The Evenbreak logoJane runs Evenbreak lying flat, as her spinal condition makes sitting difficult.

As a disabled woman running an inclusive not-for-profit job board for disabled candidates, I welcome any initiative which reduces disabling barriers in the workplace. The new green paper, “Improving Lives”, should therefore warm the cockles of my heart.

However, I have some grave doubts about some of its suggestions.

Reducing the disability employment gap

The government’s laudable aim is to halve the gap between the number of non-disabled people who are employed (80 per cent) and the number of disabled people who are employed (48 per cent).

However, if we continue with current approaches, reducing the gap from 32 per cent to 16 per cent will take nearly 50 years. Drastic action is required.

The government are right that they need to take action to reduce the disability employment gap. I’m not keen on putting a figure on it, because I believe disabled people should have exactly the same opportunity to be given a job they are capable of doing as a non-disabled person, not just a less-worse chance. There is plenty they could do.

Appropriate work

The green paper talks nauseatingly often about the evidence that shows “appropriate work is good for our health”. As a general principle, whilst remembering that a significant number of people are unable to work or for whom working would be damaging to their health, I can mostly go along with this.

However, the crucial word here is “appropriate”. For many people, their working conditions have contributed to their impairments (e.g. nurses, paramedics and labourers with back injuries, or people working in stressful conditions with mental health issues). My concern is that “appropriate work” will be misinterpreted as “any work being good for everyone”.

The challenge that our candidates face is finding employment which is appropriate for them, with employers who are prepared to be flexible in both their recruitment processes and working patterns.

What changes should the government make?

Any measures to help disabled people into work should only apply to those who are really able to work (as opposed to many of those that Work Capability Assessments have deemed fit for work who clearly aren’t).

Some of our candidates struggle to find the bus fare to attend interviews. Social security needs to reflect the fact that people who are worrying about bedroom tax, benefit caps, sanctions, social care, food banks and homelessness are not in a good position to be looking for jobs.

People who rely on Motability to travel around should be assured of that facility. Someone who is unable to use public transport is unlikely to be able to look for or travel to and from work without a suitable alternative.

Leading by example

The government itself is a huge employer. It should be leading the way in inclusive employment and removing barriers in the workplace. However, in my experience, it is the private sector who are much more willing to, for example, use our specialist disability job board. Very few public sector organisations have used Evenbreak.

The answer to this complex issue is relatively straightforward. If the public sector – all government departments, all NHS trusts and local authorities – were to remove disabling barriers in their organisations and encourage all their supply chains to do the same, there would be a rapid change in workplace culture.

Investing in support

Support to help disabled people into work is already happening successfully in many DPULOs (disabled people’s user-led organisations) up and down the country. Resources could be distributed to increase this valuable provision more widely.

Including disabled people

Most of the problems occur through non-disabled people making and implementing decisions based on what they think disabled people want and need. Nothing much will change until disabled people are included in identifying the barriers and in making decisions about removing them. Until then, “Improving Lives” is unlikely to apply to disabled people.

Would you like to respond to the Government’s plans?

Anyone can give feedback to the Improving Lives Green Paper.

The paper is available in a range of accessible formats, and people can respond online or by post by Friday 17 February.

If you’d like to let the government know what you think about being disabled and finding work read our blog on how to respond to the consultation.

Our priorities – influencing government in 2017

It already seems that Brexit is set to be the biggest political story of 2017 with the Government expected to trigger Article 50, beginning the formal process of the UK leaving the European Union, by the end of March. We think it is really important that disabled people’s voices are heard as part of this process and vital that progress towards equality made in recent years is not lost.

There will also be plenty of other important moments throughout the year and we will be working hard, with you, to make sure issues which affect disabled people’s lives stay high on the political agenda.

Social Care

Social care was hitting the headlines at the end of 2016, with warnings from the Local Government Association and Care Quality Commission that the system is in crisis. With the Government accepting a long-term solution to care funding needs to be found, social care is likely to remain high on the political agenda in 2017. Some additional funding will enter the system this year through an increase in council tax and from the Better Care Fund, but with a funding gap of £4.6 billion, this won’t provide the long term solution needed to meet rising demand and costs.

Social care is the support disabled people rely on to get up, get dressed, get out, and lead independent lives. Without that support disabled people can become isolated, can’t contribute to society and risk slipping into crisis. That’s why we are campaigning for long-term and adequate funding for care. Over 400,000 working age disabled people rely on social care, and with much of the recent focus on how care affects older people, we will be continuing to raise awareness with decision makers of disabled people as users of social care. 55 per cent of disabled care users tell us the system never supports their independence, so we are campaigning for a care system which supports disabled people to live independently and have choice and control over their care.

Employment

In February the Government’s consultation on disability, health and work will close. We want to see the Government take the opportunity to bring about real reform of the support disabled people receive both in and out of work.

The Government announced in October last year that people with severe conditions will receive continued Employment Support Allowance without needing repeated Work Capability Assessments. This is a welcome change but we want to see the Government go further in 2017 and completely overhaul the Work Capability Assessment so that it identifies the full range of barriers disabled people face to work.

We believe disabled people must be protected from any additional conditions linked to the support they receive. We would campaign against any attempts to impose requirements on disabled people receiving support.

The Government want to hear from disabled people about their experiences of employment support services and at work. Read more about how you can submit evidence to the consultation. Later in the year we are expecting the Government to publish a more detailed plan about how they intend to reform support for disabled people following the consultation, and at Scope we will be pushing for swift action.

Employers also have a key role to play in halving the disability employment gap. 85 per cent of disabled people think employer attitudes haven’t improved over the last four years and more needs to be done to encourage employers to create flexible modern practices. The Government should set out a long-term vision for Disability Confident this year and develop a campaign promoting the business benefits of disability employment.

Despite significant pressure on the Government from MPs from all political parties, the reduction in financial support for new claimants in the Work Related Activity Group of Employment Support Allowance is going ahead in April 2017. We will continue to raise concerns about the harmful impact this will have on disabled people and call on the Government to reserve this decision.

Extra costs

Following the publication of the Extra Costs Commission Progress Review in late 2016, we’ll be continuing to campaign to drive down the extra costs disabled people face and working with businesses in a range of sectors to look at ways they can provide a better service for their disabled customers.

In 2017 we expect government to announce a consultation on consumer and market policy. We’ll be continuing to campaign for markets to work better for disabled people, and for a cross-governmental approach to tackle the range of costs faced by disabled people.

We are also expecting the Government to publish their second independent review into Personal Independence Payments (PIP) which will include recommendations for reform, particularly around the assessment process. We want to see the assessment for PIP more accurately capture the range of extra costs disabled people face from higher energy bills to the need for specialised equipment. Given that disabled people spend an average of £550 a month on disability related costs it is vital that the value of PIP is protected.

In 2017 we want to see long-term funding for social care so that all disabled people who need support can get it, reforms announced that will support more disabled people in employment and to halve the disability employment gap and the protection of financial support for disabled people. We will be working closely with disabled people to continue to raise these issues with the Government.

“This child is spastic. Take her home.” – Disability History Month

Dr Lin Berwick MBE, counsellor, lecturer, journalist, broadcaster, homeopath, Methodist preacher is 66. She is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Lin remembers how a doctor labelled her as ‘spastic’ and encouraged her parents to have another child. 

“This child is spastic. Take her home…”

When I went blind

Lin went to a school for physically disabled pupils. When she lost her sight, she was bullied.

“When I went blind, the kids at the school were really nasty and I went through some horrible jeering and bullying, and people laughing at me because I walked into things. You know, I went to walk through a door that had glass panels and, because I could see the light through I thought the door was open, and of course it wasn’t. I sort of smashed my face, and then I walked into a brick wall and things like that, and hit my face again and I had tripod sticks poked into, and walking sticks poked into my face and handfuls of mud rubbed into my face, and kids saying ‘Can you see that, then, Berwick?’ It was horrendous at a time when you’re really frightened, because you’ve now suddenly got a new disability which you don’t know how to handle.”

‘Telephonist required’

Lin Berwick on phone
Lin Berwick on phone

Finding a job was another barrier Lin had to face. 

“When I got to the bank, it was one of these banks with these horrible revolving doors, which wasn’t easy, going through on a pair of tripods. Eventually, I found my way into the bank, and made my way to the accountant’s office, and when he opened the door he, said, ‘Oh, I know they told me you were disabled’, he said,’ ‘but I didn’t realise you were that disabled, but you might as well come in and sit down anyway’, and I thought, ‘God, this is a really good start to your first job interview!’ But I thought, ‘Well, I’m here. I’ve got one chance, so I might as well really go for it’, and he took my mother around the bank, showed her some of the obstacles, and we came back into the office and we started to talk about the work, and he proceeded to ask my mother every single question about my training.”

Becoming a Methodist preacher

God's Rich Pattern: Meditations for when our Faith is Shaken
God’s Rich Pattern: Meditations for when our Faith is Shaken

Even in her spiritual life, Lin faced prejudice when she tried to follow her vocation and become a Methodist preacher.

“The Secretary of the meeting said, ‘I think we’re going to have a problem with you.’ I said, ‘Oh yes! Why’s that?’ ‘Well, due to your disability, I don’t know how you’ll cope with the public speaking,’ so I said, ‘Well, as someone who’s done over 300 radio broadcasts, I don’t think you’re going to have a problem.’ ‘Oh,’ and he said, ‘And I don’t know how you’ll cope with the academic study.’ I said, ‘Well, I have ‘O’ levels, and I have the equivalent of a degree in Psychology.’ He said, ‘Oh, you can learn then!’ and I thought, ‘God, if this is the kind of prejudice I’m going to get, this is just amazing stuff,’ and I said, ‘Yes, I can learn’ and he said, ‘And then we don’t know how you’ll cope with the access to the church buildings,’ and I said, ‘There, I’m prepared to admit you have a problem, but maybe together, we can work at it.’”

Listen to Lin’s life story on the Disability Voices website.

Books by Lin Berwick

Find out more about the Lin Berwick Trust.

Read the rest of our blogs for Disability History Month

What we would like to see in the Autumn Statement 2016

This Wednesday Phillip Hammond will give his first Autumn Statement as Chancellor, the Government’s first major financial statement since the vote to leave the European Union.

At Scope we’ve been campaigning and raising awareness of the important issues that disabled people face ahead of Wednesday’s Autumn Statement announcement.

Autumn Statement

There has been lots of speculation about what he will include. He has decided not to go ahead with previous Chancellor George Osborne’s formal target to create a budget surplus by 2020 which will give him some flexibility on how much he spends.

Theresa May’s first speech as Prime Minister set out her commitment to creating a country that ‘works for everyone’ and ‘allowing people to go as far as their talents will take them.’ A recent common theme has been a focus on those ‘just about managing.’ But what does this mean for disabled people and what are Scope been calling for?

Last week we saw passionate speeches from all parties about the need to rethink the implementation of forthcoming reductions in financial support to Employment and Support Allowance (ESA), at the beginning of the month the Government launched its consultation to tackle the disability employment gap; and, last month we published research highlighting the crisis in social care for young disabled people.

Taken together, there are many disabled people who are ‘just about managing’.

Our Extra Costs work has highlighted life costs more if you’re disabled. £550 a month more. From the need to purchase appliances and equipment, through to spending more on energy. And yet payments aimed at alleviating these – such as Personal Independence Payments (PIP) – often fall short of enabling disabled people to meet extra costs, leaving many turning to credit cards and payday loans to help with everyday living.

Ahead of the Autumn Statement we think there are three key areas that need addressing.

Social Care

Social care has been at the top of the news agenda in the run up to the Autumn Statement with the Care Quality Commission, Local Government Association, Care and Support Alliance and even the Conservative Chair of the Health Select Committee saying the social care system is in desperate need of investment. Working age disabled adults represent nearly a third of social users.

We have long been calling for sustainable funding in social care. Reductions in funding to local government over the past six years mean the social care system is starting to crumble under extreme financial pressure. We have heard from disabled people who have had to sleep fully-clothed, in their wheelchairs. Scope research in 2015 found that 55 per cent of disabled people think that social care never supports their independence. And just last month we found young disabled adults’ futures are comprised by inadequate care and support.

Social care plays a vital role in allowing many disabled people to live independently, work and be part of their communities. That’s why urgent funding and a long-term funding settlement are needed.

Extra Costs

On average, disabled people spend £550 a month on disability related costs and when we asked disabled people about their top priorities for the Autumn Statement, 70% said protecting disability benefits. We want to see PIP continue to be protected from any form of taxation or means-testing and the value of PIP protected.

The Government is expected to announce significant infrastructure investment and there will be potentially be announcements on digital infrastructure and energy.

We hope energy companies are required to think more about how they can support these consumers with their energy costs more effectively. With 25 per cent of disabled adults having never used the internet compared to 6 per cent of non-disabled adults, any new digital skills funding should include specific funding for disabled people.

Employment

The Government made a welcome commitment in their manifesto to halve the disability employment gap and a plan on how to achieve this in the Improving Lives consultation.

The Autumn Statement provides an opportunity for the Government to take steps to support disabled people to find, and stay in work.

Last week, MPs debated the changes to Employment Support Allowance Work Related Activity Group due to begin in April 2017. MPs from across political parties have been urging the Government to think again about the changes. Half a million disabled people rely on ESA and we know they are already struggling to make ends meet. Over the last year we have been campaigning against this decision as we believe reducing disabled people’s financial support by £30 per week will not help the Government meet their commitment to halve the disability employment gap.

Read more about the Green Paper and how to get involved with the consultation.

“I have a love-hate relationship with my benefits”

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.

In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.

I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.

When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.

My most heart-breaking moment

I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.

In 2011,  I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie wearing her face mask

In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.

It made me anxious and worried

In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.

This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.

I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.

Josie, a young disabled woman, following a reaction where her face has swollen and become red
Josie following a reaction with swelling and redness

I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.

In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.

Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.

What needs to happen next

My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.

We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.

Visit Josie’s blog site to learn more about Mast Cell.

If you have any questions about benefits or employment, contact Scope’s helpline where we provide free, independent and impartial information and support to disabled people and their families.

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