Tag Archives: Benefits

2016: a year in the life of the Scope helpline

In 2016,  the Scope helpline responded to nearly 20,000 requests for information and support by telephone, email and via Scope’s online community and social media networks. We also supplied answers to over one million requests for help and information via our website.

Your top 5 issues in 2016

Apart from wanting to know more about Scope, the top issues people contacted us about were:

  • Benefits and finance
  • Independent living
  • Social care and services
  • Transport
  • Employment

Funding the extra costs of disability

Unsurprisingly, the number one topic you ask about is benefits. To respond to this, we’ve employed an extra benefits and finance specialist  on the team.

To complement the work of our specialist advisors, our partnership with the charity Turn 2 Us offers an online benefits calculator and grants search tool. Since its launch in July 2015, thousands of you have used this free service to improve your finances, completing 8,100 benefits calculations and over 7,200 grants searches.

In 2016 so far, the calculations have identified over £319,000 per week in unclaimed benefits. This can make a massive difference to the lives of disabled people and their families, as this customer explains:

“Thanks to your brilliant advice, I have had some fantastic news. I applied for Attendance Allowance with the form on your website and I have been awarded £55.10 per week which will certainly be a big help to us. Thank you.”

We love it when we hear stories like this. Another customer contacted us following his failed application for Employment Support Allowance (ESA). Our benefits specialist provided supporting information so that he could conduct his entire appeal himself. He went through two tribunals and finally, after spending a winter without heating and using food banks, he eventually won. He received a backdated payment of more than £5,000 as well ongoing ESA payments to support him to live.

Just the job!

Another caller who was out of work applied for a job at a company signed up to the Government’s positive about disability scheme. He met the essential criteria but had received a standard rejection letter so he thought he’d been discriminated against. We spoke to him about how to challenge the decision. The company reviewed his application and admitted a mistake had been made and he did indeed meet all of the essential criteria. They offered him an interview and he got the job!

Our online community

As well as answering calls and emails, Scope helpline continues to play an active role in our ever-growing online community. We are investing more time in answering your questions online because we know that answers to one person’s query can help many others too. For example, one discussion has had over 12,000 unique page views, meaning that many more people are continuing to benefit from our expertise and advice.

New information products

As well as responding to a wide range of enquiries, we have also produced lots of new online information in response to popular demand:

  • Technology in association with Abilitynet
  • Equipment with Which? (coming soon)
  • Independent living, updated by our new specialist in social care.

In 2017, we will continue to trial new ways to deliver information content with pilot videos on PIP assessments, PIP appeals and employing your own PA.

We’ll also be launching a new information product that will help guide people new to disability, like this caller to our helpline:

“After working within the corporate industry for over 20 years, I have recently become disabled and found the past 9-10 months totally life-changing. I’ve called various places and not received the help or level of service I have just been provided. I don’t usually do this but I really want to make a point to applaud the level of service and professionalism your helpline has. I felt as though I have been treated with dignity and pride, and not made to feel uncomfortable talking about my disability. So thank you again.”

Goodbye to Veronica

2016 also saw the retirement of helpline manager Veronica Lynch who has worked on Scope’s national helpline since it launched in 1990. She retired in April after 26 years’ dedicated service and won a national award for staff with a long-term commitment to their cause and who had made a positive impact to people’s lives.

We miss her but, more importantly, so will the people who have asked for her support over the years.

One parent, whose twins have cerebral palsy, said:

“I can honestly say that I don’t think I could have coped had it not been for Veronica and the helpline. They have given me so much time and support through all my difficulties and battles.”

Have a happy Christmas and New Year!

Thank you to everyone who has contacted us in 2016 and may we wish you all a Happy New Year.

For free, independent and impartial information and support on the issues that matter to disabled people and their families, contact Scope helpline on 0808 800 3333 or helpline@scope.org.uk

Please note Scope’s helpline is closed 24 December to 28 December, and between 31 December and 2 January. 

Scope helpline receives no Government support: £12 can help pay for a call to the helpline this Christmas. Please support us if you can.

 

“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.

You can also start or join a discussion on our online community.

Welfare and Work Bill – our priorities in the closing stages

The Welfare and Work Bill that is currently going through Parliament is a big priority for Scope because it will have a major impact on the employment prospects of disabled people.

As scrutiny reaches its final stages in the House of Lords, and as set out in our last blog post on the Bill, Scope is focused on two key issues – opposing the proposed cut to Employment and Support Allowance (ESA) for some disabled people, and persuading the Government to report on progress in meeting their commitment to halve the disability employment gap.

Disability employment gap reporting

A key issue for Scope is requiring the Government to report annually on progress in meeting its manifesto commitment to halving the disability employment gap. The first clause of this Bill introduces a reporting obligation on the Government’s progress towards achieving full employment, ensuring Parliamentarians and the public are kept informed of progress towards meeting this target.

Scope believes that this should include a requirement for the Government to report annually on meeting its commitment to halve the disability employment gap, which itself set as a Manifesto commitment.

The gap between disabled people’s employment rate and the rest of the population has remained stubbornly static at around 30% for the last decade. The Government cannot hope achieve its objective of full employment unless it halves this gap. Reporting annually on progress towards doing so, will draw attention and accountability to this very welcome commitment, and will greatly help to prioritise its delivery by the Government.

This looks set to be the first issue that Peers debate then the Bill’s Report Stage starts later today.

Opposing reduction to ESA

On Wednesday, they will turn their attention to the Government’s proposed cut to Employment and Support Allowance for disabled people in the Work Related Activity Group.

In previous blog posts and Parliamentary briefings, we have set out how this proposed cut of £30 a week will adversely affect some disabled people, who have been found unfit for work by an independent assessment. The cut will disincentivise them from finding employment, and push them further from the labour market.

Two important developments have powerfully brought home this message to Parliamentarians recently. At Lords Committee Stage, Scope and our coalition partners in the Disability Benefits Consortium (DBC), supported Lord Low, and Baronesses Meacher and Grey Thompson, to review the impact of the ESA WRAG cut.

From evidence received from disabled people, as well as organisations representing them, the review found the proposed cut to ESA WRAG would make it much harder for people in this group to find work. This is because it would more difficult to be able to afford training, work experience and volunteering. Cutting benefits would also lead to stress and anxiety as people struggled to pay the bills, affecting their physical and mental health, according to the review’s findings.

It recommends that Government should not push ahead with the cut. Instead, they should put in place better support for disabled people to help them build up their skills and support to look for, and stay in, work.

Disabled people had the opportunity to communicate these messages face to face with MPs  in a lobby of Parliament a couple of weeks ago, which was attended by nearly a hundred members of Parliament.

The review and lobby of Parliament have generated considerable momentum behind the campaign to reverse the ESA WRAG reduction. Both independent and leading opposition Peers have signed up to amendments to scrap the ESA WRAG cut, and its equivalent in the Universal Credit system. Scope and our DBC partners are very hopeful that this will herald a vote against a reduction in ESA on Wednesday night in the House of Lords.

We will be live tweeting the debates on Monday 25 January and Wednesday 27 January, and you can follow proceedings live online on Parliament TV. Watch out for more blog updates on the bill as it leaves the Lords, and MPs consider any changes they have made.  

What will the Comprehensive Spending Review mean for disabled people?

On Wednesday, the Government announces its spending decisions for the next four years in its Comprehensive Spending Review (CSR). These decisions are likely to have a big impact on the lives of disabled people in this Parliament.

Here are three areas that Scope will be looking for the Chancellor to address.

Support so that more disabled people can find, stay and progress in work

The Government has set out an ambitious – and very welcome – aim of halving the disability employment gap. This was something that Scope had called on all Parties to do in the run up to the 2015 General Election, and both the Prime Minister and Iain Duncan Smith have said this is a priority for the Government.

Right now, the difference in the employment rate amongst disabled people and the rest of the population is 30%, and has remained static for a decade.

We know disabled people want to work, and are ready to do so. But this gap remains for a range of reasons – from a lack of suitable and available jobs, poor attitudes from potential employers and a lack of appropriate support to enter the workplace.

But if this gap is to be halved, the Government needs action which matches this ambition. For example, current back to work programmes have poor outcomes in supporting disabled people into work and these must be improved to ensure specialist, tailored support is available.

As the Chancellor is expected to give more detail about the ‘Devolution Revolution’ it is critical that this opportunity connects disabled people to local jobs and growth if he is also to ‘halve the disability employment gap’.

Tackling the extra costs of disability

Life costs more if you are disabled. Our research shows that disabled people spend an average of £550 on disability related extra costs each month.

Disability Living Allowance (DLA) and its replacement, the Personal Independence Payment (PIP), are in recognition of this. Scope very much welcomed the Chancellor’s commitment in the June 2015 Budget to protect these payments, and we will be looking for him to reaffirm this commitment.

But the Chancellor can also go further in making sure these extra costs are tackled and reduced. Last year, an independent inquiry by the Extra Costs Commission made a number of recommendations about how these extra costs can be driven down through action by Government, businesses, regulators and disabled people themselves. The Chancellor should use this opportunity to adopt some of the Commission’s recommendations to support disabled people as consumers and drive down these extra costs in areas like taxis and insurance. He could also adopt the Commission’s recommendation to get more disabled people online, supporting them to take advantage of online offers, information and advice.

Supporting disabled people to live independently

Social care is the support that disabled people need to get up, get washed, and get out of the house.

The care system is currently chronically underfunded, with £4.6 billion having been removed from the system over the last five years. According to the Local Government Association and the Association of Directors of Adult Social Services, an additional £700 million per year is needed to address the social care funding gap, plus £2 billion over the spending review term.

Recently published Scope research shows the impact of this care crisis. Over half of the disabled people we spoke to who use social care (55%) can’t get the support they need to live independently. It is essential the Chancellor addresses the care crisis in the Spending Review, providing a sustainable settlement for the social care system, so that disabled people are able to receive the support they need to live independently.

The Government has also promised to do more to integrate the health and social care systems. Any announcement the Chancellor makes on how he plans to do this must consider disabled people and how integration will support their independence.

Like much of the country, Scope will be watching the Chancellor’s announcements closely. No other set piece political event over the next four years will provide a better opportunity for the Government to give disabled people an equal stake in our country’s future.

Four things we’ll say to MPs on the Welfare Reform and Work Bill

This afternoon, Scope is giving oral evidence to a committee scrutinising the Welfare Reform and Work Bill. It aims to achieve full employment in the economy and reforms a number of working age benefits that will impact on the lives of disabled people.

Scope will be putting forward the following four key priorities to MPs:

Halving the disability employment gap

Scope was very pleased with the government’s bold and ambitious manifesto commitment to halving the disability employment gap, taking forward a Scope pre-election recommendation, set out in our Million Futures report.   

In order to see this through, we want to see the government include a reporting requirement on halving the disability gap to clause 1 on full employment reporting. Getting a million more disabled people back to work, will be essential to realising the government’s vital aim on full employment.

Research for Scope set out in our ‘Enabling Work’ report shows the substantial economic benefits of even small increases in the disability employment rate – to give just one example, a 10 percentage point increase in the disability employment rate will grow Gross Domestic Product by £45 billion by 2030.

Oppose reduction in Employment Support Allowance payments to the Work Related Activity Group

The government is cutting the financial support provided to disabled people through the Employment and Support Allowance Work Related Activity Group (ESA WRAG).

We do not see this as an answer to halving the disability employment gap. Disabled people placed in ESA WRAG have been found ‘unfit for work’ by the independent Work  Capability Assessment. Rather than incentivising disabled people to find work, this will push them further away from the job market, and make their lives harder.

Improving employment support for disabled people

Research shows that disabled people very much want to work, but they face a range of barriers to doing so.

Scope wants to see the government bring forward detailed plans for the development of improved employment support for disabled people in order to enable them to enter, stay and progress in the world of work. Scope has a number of proposals on what specialised employment support should look like for disabled people.

Enhancing extra costs payments for disabled people

Scope welcomes the recognition in this Bill of the importance of Disability Living Allowance (DLA) and Personal Independence Payments (PIP) in meeting the extra costs of disability. Scope’s research shows that disabled people’s extra costs average £550 a month, around £360 of which are met by DLA/PIP.

Scope believes it’s critical the government to build on its commitment to protect DLA/PIP from cuts, by enhancing it through a triple lock so that it’s value rises by the higher of CPI inflation, earnings or 2.5 per cent.

You can follow Scope’s evidence session with MPs today via Twitter  and watch this space for a report back on the outcome of Scope’s lobbying on these issues.

Enterprise Rent-a-Car pledge to be disabled-friendly service and employer

Donna Miller is HR Director at Enterprise Rent-a-Car. Here she explains why the company has backed the recommendations from the Extra Costs Commission report, and pledged to become a disabled-friendly service and employer. 

Photo of Donna Miller, wearing a suit and smilingVirtually all large companies have mission statements that articulate something about their morality and beliefs.

We’re surrounded by brands who want to assure us that they not only provide an excellent service and great value for money, but do so with integrity, equality and inclusivity firmly in mind.

But behind the good intentions and overuse of buzzwords, it seems that there is a gulf between what companies claim to stand for and what they actually deliver to consumers.

The Extra Cost Commission has unveiled that people with disabilities pay an extra £500 a month for goods and services, which seems to be at odds with what companies assert about their ‘inclusive’ business practices. It seems that people with disabilities have to pay a premium to live the same life as others – hardly good value.

Enterprise company cars lined upI believe that Enterprise is different. Like other companies, we also have nice sounding words and phrases that make up our core values. They are at the core of every decision we make and that is why we are trying to make Enterprise a more disabled friendly service provider and employer.

As a service provider, Enterprise is firmly committed to providing disabled people with the same services at the same prices as other customers. We pride ourselves on our award winning customer service, which extends to everyone regardless of race, gender, religion, or disability. Furthermore, we have been taking practical steps to make our offices and branches more accessible where we can, but that’s not toStaff answering phone at Enterprise say that we get it right 100 per cent of the time.

Despite us making progress towards its goal of being the first choice for disabled consumers, we have quite a way to go. It’s a journey that’s made up of many steps, but we are absolutely committed to getting it right.

Serving the disabled community is the right thing to do from a moral perspective, which should be motivation enough for any business. However, treating disabled customers equally could also have some benefits for those companies that get it right.

The Extra Cost Commission has called on disabled consumers to make their collective annual spend of £212 billion heaAccessible carrd. Companies that listen to their disabled customers could find their ‘integrity’ and ‘inclusivity’ result in other well know business terms, such as profit, satisfaction, and loyalty.

I can assure you that Enterprise is listening.

Are you a business that would like to pledge to take on some of the Extra Costs Commission recommendations? We’d love to know. 

Struggling to make ends meet? Help is at hand

David Samson, a Welfare Benefits Specialist at the charity Turn2us. Here he explains how their benefits calculator, which is now hosted on Scope’s website, can help.

“We started to get behind on our bills and dreaded the post arriving. The stress of finances and day to day living was tearing us apart.”

This is how James – one of our users – described his situation before coming to us for help. James is disabled and unable to work, and he was struggling to get by on a low income. He felt confused about what financial support could be available.

As a charity helping people in financial hardship in the UK, we hear from thousands of people like James every day. We know that people can be hit by financial difficulties at any point in their lives for many different reasons such as illness, disability or caring for someone. Many are forced to live in cold homes or go without food as a result, yet there is often low awareness of what support they can claim, or sometimes a reluctance to ask for help.

One of the ways we help people in need is through our benefits calculator. This free and easy-to-use tool tells you what welfare benefits you could be entitled to, how much you may receive and how to make a claim.Woman on her laptop

It calculates entitlement to means-tested benefits including Income-related Employment and Support Allowance and Housing Benefit, and also highlights potential eligibility for non-means benefits such as Disability Living Allowance and Personal Independence Payment. The tool is fully accessible for disabled people, and can be used on a mobile phone. It also links through to the Money Advice Trust’s ‘My Money Steps’ service which provides free debt advice.

Through using the benefits calculator, James managed to make a successful claim for Employment and Support Allowance (ESA), receiving £200 every fortnight. His situation is now more positive and he says: “Things feel more stable now and I’m far less anxious. I feel I can move on with my life and pay the bills.”

In the last financial year, we saw over 940,000 calculations completed on our benefits calculator – a 63% increase on the previous year. As economic difficulties and proposed cuts to welfare continue, the need for help is greater than ever and we expect this rise to continue, which is why Scope and other charities are now hosting it on their website too.

The calculator is continually updated to reflect the latest benefit changes, and has helped more many people to understand their entitlements at an uncertain time.

Woman with dark hair sitting on the sofa in her living room on a laptopHarriet supports her disabled adult son and was worried when his entitlement changed and his benefit was cut. Using the benefits calculator, she identified that he was eligible for additional support at £40 per week and says: “It’s taken a huge worry off of both of us. I’m so relieved my son can keep his financial independence.”

We would urge anyone who is struggling to take a few minutes out of their day to use the calculator to see what support they can claim for themselves or loved ones. Even if you have checked in the past, it is worth doing so again, especially if you have recently experienced a change in your circumstances.

Our research has shown the value of checking entitlements with 85% of households who currently claim benefits telling us that this extra income has helped with their bills, childcare costs and even avoiding debt.

So why not see if you might be eligible for help today? If you need any support with the calculator, you can ring Scope’s helpline on 0808 800 33 33 Monday to Friday, 9am to 5pm, and someone can talk you through it.  

Disabled people should come together as ‘bold and loud’ consumers

Robin Hindle Fisher is Chair of the Extra Costs Commission, a year-long independent inquiry into the extra costs that disabled people face. As the report is published today, Robin says, “working on the Extra Costs Commission has been emotionally moving – it has helped me realise that I spent the first 54 years of my 55 year life effectively denying that I am disabled.”

Over the past year I have chaired the Extra Costs Commission, an independent body set up to look for market-based ways to relieve some of the extra costs that disabled people face as consequences of living with their disabilities.

The nature of these costs varies enormously across different conditions and from individual to individual. Examples include the costs of specialist equipment, such as wheelchairs, additional clothing, higher transport costs and higher energy bills, due to increased needs for heating caused by immobility.

Young disabled man shoppingThe disability charity Scope estimates that disabled people have to spend an average of around £550 per month on these extra costs, just to be able to live the same lives as others.  This compares with average welfare payments of £360 per month – leaving a substantial gap that disabled people have to finance. It is this gap that we have sought to reduce.

I have  enjoyed my involvement with the Commission enormously and I believe we have set out a number of recommendations that will have significant impact. One of the key recommendations is that disabled people, of whom I am one, should be prepared to be “bold and loud” about their disabilities. The Commission believes that this will help to make the spending power of the disabled sector, the so-called ‘purple pound’, an higher profile consumer phenomenon – and eventually drive down costs.

Disabled woman paying for shoppingI have found this “bold and loud” aspect of the Commission’s work emotionally moving. I have realised that I spent the first 54 years of my life (I’m now 55), effectively denying that I am disabled. What was it that drove me, a moderately ‘successful’ person (in terms of academic attainment, career advancement and material reward), to feel that I could not be seen as being ‘disabled’?

For a long time I assumed the answer was specific to me – maybe the result of my up bringing, that ingrained a strong ‘you are as good as anyone’ ethic in me. It affected me in a whole array of ways – how I dressed, how I strove for badges of conventional success, how I chose to interact with other disabled people – I didn’t.  It certainly affected how I explained my disability to my children wMum and disabled daughter looking at a tablet togatherhen they were young. Fearing that they would be teased, or worse, about their father’s physical deformities (they never were), I described myself as ‘special’, not in an elitist sense, but meaning just ‘different’.

Working on the Commission has helped me understand that I am not unusual. Many disabled people avoid the term, I guess fearing that they will be labelled by society as inferior to the able bodied majority. This denial is completely understandable – when I was growing up in the ‘60s and ‘70s disability was stigmatised and society assumed that you were helpless, and quite possibly hopeless, if you were born or found yourself with physical, let alone mental, health issues.

Although the stigmatisation is massively less pervasive now than it was 30 or 40 years ago, it is still having hidden effects. One of them is the reluctance that many of us still feel to accept the badge of disability. But I now think this reticence is serving us badly. It certainly reduces our collective consumer influence – and thus contributes to the extra costs we face. Hence our call to disabled people to be “bold and loud”.Disabled woman in a wheelchair shopping

Perhaps even more importantly, I believe our reluctance to be identified as ‘disabled’ is perpetuating the very stigma that we seek to avoid. I think we should take our lead from the gay and lesbian community and be prepared to ‘come out’ that we are disabled. I feel that until we do that, disability will remain ‘inferior’ in some people’s minds, ‘special’ in others’, rather than what it should be – just another version of ‘normal’.

Read the Extra Costs Commission report, published today. 

If I was Prime Minister – #100days100stories

Every day for the 100 days leading up to tomorrow’s election, we’ve published the story of a disabled person or parent of a disabled child. On the final day of our campaign, we asked Charlie Willis, a young disabled campaigner with the organisation Independent Lives, what he would do if he was Prime Minister.

There are more than 11 million disabled people in the UK. As the 2015 General Election dawns, disabled and non-disabled people alike will be voting tomorrow for those candidates that they feel will best represent them in the Houses of Parliament.

If I were Prime Minister, I would hope to be able to use the position to improve the lives of disabled people. With this in mind, there are four changes I would immediately propose, broad ideas with one common theme: empowerment.

No. 1: A diverse governmentCharlie at a computer

Firstly, open up positions of power to different identity groups. A government should be representative of the people it supports, including identities formed around race, gender, sexuality, class and disability.

The present situation is far from this ideal: the diversity in our country is not fully reflected in the diversity of the Government.

By improving this, the country can start to champion the needs of the many, rather than the needs of the elite few, by fair and equal empowerment in terms of rights, visibility, opportunities and respect.

No. 2: An accessible country

Secondly, make spaces accessible for all. Accessibility is not just about ramps into buildings, but about all spaces being adapted to public need. Many disabled people still experience significant barriers to transport, buildings and the countryside.

Disabled people with varying impairments should always be included in the design process of new transport and the building of accessible lifetime homes.

This would work towards a Standard of Accessibility, by reviewing the accessible standards of building regulations to include hearing loops, quiet rooms or Changing Places toilets. By making everywhere accessible, people are empowered to get involved and have a voice.

No. 3: Empower peopleCharlie standing with a stick next to a poster

Thirdly, protect independence through welfare. Some disabled people are feeling the effects of changes to welfare, personal budgets and constant reassessments of need.

For those who rely on support to live their lives, the consequences of further cuts could be severe.

A tax on the richest people in the UK, and higher corporation tax, would ensure a future for the welfare state with adequate benefits for all that required it. Local authorities, the NHS and schools would have more money.

This would protect those with the most substantial need, empowering others to live more independently, being able to afford true choice and control.

No. 4: A change in attitudes

Lastly, reform attitudes within, and outside, government. In recent years disabled people have been repeatedly scapegoated and victimised in all areas of society. Representations of identity groups are linked to the behaviour towards them.

Images in the media that show disability are often manipulated and disabled people are represented as “weak”, “faking it”, or “scroungers”. Perhaps as a result, disability hate crime is on the rise.

Therefore, education needs to be inclusive of difference. The world of disability is a reality that everyone, at some point, will come into contact with, but is seldom taught about.

Representing disabled people in a more positive and radical light will end this manipulation and allow the creation of individual, empowered, identities for all disabled people.

Final thoughts…Charlie talking to a woman

Ultimately, disabled people and the organisations that empower them need to focus on the fight for independent living, and move the discussions in government towards preserving our civil rights.

Disability is a political issue. As Prime Minister, discussing issues around power, accessibility, protecting independence and our attitudes towards disability would help all people, not just those with impairments.

Independent Lives is a user-led charity supporting disabled people in West Sussex and Hampshire.   

Find out more about our 100 days, 100 stories campaign and read the rest of our stories so far

Three things the new government needs to remember about disability – #100days100stories

Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.Close-up headshot of Josie, a woman in her late 30s

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic  reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.

1.  Social care should support us to live, not just to survive

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.

My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.

2.  Remember that benefits are people’s lifeline

There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.

If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.

Josie, a disabled woman, smiling with her teenage son
Josie with her son Olly (her daughter Chloe is in the photo at the top of the page)

There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled.  I actually found it very difficult to come to terms with the idea of claiming benefits.

Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.

3.  Disabled people deserve a role in society

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

The loss of the Independent Living Fund has been a blow – people like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.

A question of equality

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.

Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com

Tomorrow is the final day of our 100 Days, 100 Stories campaign. Find out why we did it, and read the rest of the stories so far.