Tag Archives: Disability Living Allowance

How to prepare for a PIP assessment

Preparing to attend a Personal Independence Payment (PIP) assessment can be a difficult time.  Scope has created a short film to guide you through the process.

The PIP assessment letter

When you get your letter, check the date and venue of the assessment. If there is a problem, tell the Department of Work and Pensions or the assessment provider as soon as possible.

Ask for the support you need to attend the assessment

Check the parking and facilities near the assessment centre.

Read the assessor’s guidance beforehand

The more prepared you are, the easier it is to relax. Read the guidance a week before the assessment so you are prepared.

Take a copy of your application and supporting evidence

It’s useful to take along your evidence so that you can refer to it during the assessment to ensure you’re covering all the bases.

Don’t assume the assessor knows anything about you

Be as honest and open as you can about how your impairment impacts on your health and well-being. Think about the everyday things you do to manage your impairment. It’s important to go into as much detail as possible about what a day in your life is like.

If you make it seem as if you are able to manage doing something but normally you’re not able to do it, then the assessor may assume that you can always do that thing.

Don’t ‘put on a brave face’ about how you deal with your impairment.

Talk about support you need even if you don’t get it now

At the assessment you have to show what you can’t manage, not how you do.

Ask someone who knows you well to come with you

Take someone with you to your assessment. This can help if you need physical support to get to the assessment centre but also it’s useful to have someone else listening in and filling in things you may miss.

And if you can’t get support from a family member or a friend, maybe consider contacting an advocacy service or someone who can just be there to support you.

Read more information on PIP assessments.

“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.

The Emergency Budget 2015 – what we learnt

As commentators continue to try and make sense of Wednesday’s Emergency Budget, what did we learn about the implications of the Chancellor’s statement for disabled people?

Meeting the extra costs of disability – DLA/PIP and tax credits

Despite setting out details of how he planned to find £12bn of savings in the welfare budget, on Wednesday the Chancellor confirmed that disability benefits – including DLA and PIP – will continue to be protected from taxation or means-testing. This directly recognises one of Scope’s priority policy recommendations.

It’s hugely significant that, in this most-political of Budgets, the Government has set out its stall in protecting the value of these payments.

It’s also worth noting that despite the extensive coverage of the Government’s plans to reduce tax credits for certain groups, disabled people have been relatively well-protected in comparison. Many disabled employees earning lower annual salaries and who are managing health conditions alongside part-time work use tax credits to supplement their income.

Work allowances for disabled people are being maintained and the rate at which disability-specific tax credits are set has been protected relative to other groups. However, it’s important to note that disability tax credits will still be subject to steeper tapering alongside other types of credit.

This serves to underline the importance of supporting flexible working for disabled people – both in helping to manage work alongside health conditions and ultimately as a way of maintaining disabled people’s engagement with the labour market.

As such, the move to keep DLA and PIP outside of taxable income is more important and welcome than ever; if extra costs payments had been taxed, this would have resulted in a 40% drop in the annual income for a disabled person on the higher rate of PIP at the minimum wage.

And whilst many of the changes will still have significant implications for disabled workers, there is at least a real recognition that there is something exceptional about support for disabled workers – and that protecting this support is important.

Full employment

Whilst there was no further mention in the Budget statement itself, the publication of the Welfare Reform and Work Bill on Thursday moved the Government further towards its ambition of delivering full employment. Halving the disability employment gap will be a key stepping stone in achieving this.

It’s therefore disappointing that the Government plans to reduce the value of Employment Support Allowance (ESA) for those in the Work Related Activity Group (WRAG) from April 2017 onwards.

ESA has a vital role to play in supporting disabled people make their way into employment. Reducing its value will only make life harder for disabled people who face additional challenges to get back into work.

Disabled people are pushing hard to find jobs and to get on at work, but they continue to face huge barriers. Unlike the other back-to-work programmes that are currently available, the support that disabled people receive needs to be more personalised and tailored to their needs.

On Wednesday, the Chancellor promised further support measures for employment – and we’ll be keeping a close eye on what is being proposed.

Social care

Whilst there was confirmation that the Government would be committing to a further investment in the NHS, it remains extremely concerning that there was no mention of social care in the Chancellor’s statement.

A third of all social care users are disabled people, and access to the care system is critical in supporting many people to live independently. But we know that the system is under increasing demographic and financial pressure, and that the rationing of care is already having serious implications in supporting disabled people to get up, washed, dressed and out the house each day.

It’s therefore essential that the commitment to investing in the healthcare system is matched by a sustainable future funding solution for the care system in the Comprehensive Spending Review later this year.

In addition, there needs to be greater clarity on what the integration of health and social care and the implementation of the Better Care Fund will look like for disabled people.

What we’re looking for in the 2015 Emergency Budget

On Wednesday the Chancellor will deliver his Emergency Budget before the House of Commons, presenting him with the opportunity to set the tone and underline the priorities for the Conservative Government in the new Parliament.

The Chancellor is expected to detail how the pledges set out in the Conservative manifesto will be brought into legislation in the coming months.

Scope will be following the announcements closely – so what can we expect to hear?

Meeting the extra costs of disability

Much of the pre-Budget analysis has focused on the Conservative plans to find £12bn of savings in welfare spending – with speculation that this could mean cutting or taxing disability benefits.

Life costs more if you are disabled. The extra costs faced by disabled people can have a significant impact on the living standards of disabled people, who spend an average of £550 per month on costs related to their disability. Disability Living Allowance (DLA) and Personal Independence Payment (PIP) are the payments that are designed to contribute towards these extra costs.

The Government has repeatedly stressed that payments designed to tackle the extra costs of disability will continue to be protected in the new Parliament. The Chancellor stated it at Conservative Conference last year, the Prime Minister promised to ‘safeguard and enhance’ the value of PIP in the election campaign, and the Conservative manifesto confirmed it once again.

The extra costs of disability act as a taxation on disabled people and Scope wants to not only see the value of the payments protected, but ultimately enhanced so that the value is triple-locked in the same way that pensions are – rising by whichever is the higher of inflation, average earnings or a minimum of 2.5%.

Scope has worked extensively to highlight this issue over the last two years and we’ll be keeping a very close eye on what protection is afforded to extra costs payments on Wednesday.

Employment

It’s extremely welcome that the Government has committed to halving the disability employment gap, taking forward one of Scope’s key policy recommendations. Scope very much hopes that the Chancellor will reiterate this in his statement on Wednesday.

However, this commitment will be undermined if BBC News reports last Thursday on a leaked Whitehall memo about Government plans to reduce the value of Employment Support Allowance (ESA) are accurate.

ESA provides the financial support that allows many disabled people to move into the workplace. With other government schemes such as the Work Programme failing to offer the personalised and tailored support that many disabled people need to get into work, reducing their incomes won’t incentivise them to find a job. Instead, it will make life more difficult at a time when disabled people are already struggling to make ends meet.

The proposed changes to ESA must also be considered in the context of the news earlier in the year that the financial support provided through the Access to Work scheme will also be subject to capping.

Scope is strongly urging the Government not to cut access to this financial support but to instead look at what can be done to reform and improve its back to work schemes and make increased use of city and regional growth strategies – such as the newly-announced Northern Powerhouse – to better connect disabled people to employment opportunities.

Digital inclusion

Scope facilitated the Extra Costs Commission, a year-long independent inquiry into the extra costs of disability, with the final report published just last month.

One of the report’s key recommendations is the need to develop improved online access for disabled people. Twenty seven cent of disabled people have never used the internet, compared to eleven percent of non-disabled people. This prevents disabled people accessing appropriate financial products and getting some of the best deals on goods and services.

On Wednesday we’ll be listening out for any further announcements about the Government’s plans to address this critical issue.

Social care, integration and independent living

It’s expected that the Chancellor will use the Budget to highlight the progress of the Better Care Fund (BCF), and perhaps extend it. Scope welcomes the Fund’s potential to improve the integration of health and social care services and promote independent living for disabled people.

However, the scheme must work better for disabled people going forward. Only 14 of 91 the current local BCF Plans include schemes specifically aimed at disabled adults. This represents a missed opportunity, which any BCF extension and longer term vision on integration must address.

Furthermore, despite the announcement of increased funding for the health service, it remains critically important that this is matched with a sustainable future funding settlement for social care.

Visit our blog again after the budget to read our positions and analysis.

“I wasn’t going to do it for charity this year. But I saw Scope is the official charity – it made sense!”

On 2 August more than 15,000 amateur riders will take to the streets of London and Surrey for the third Prudential RideLondon-Surrey 100 – a 100 mile route on closed roads.

700 of those will be taking part for Scope as part of our official charity of the year team, and one of those is Carl. He knows the route having taken part in 2014 and will be hoping the sun shines, unlike last year!

“Box Hill was okay. But Leigh Hill was shut, we had to go down a diversion because of the weather and that was horrendous. So I’m hoping it’s not like that!” A keen cyclist, he’s often out with his friends testing themselves on the local hills. But there’s nothing quite like event day. “I think if you ride for a charity, the support you get on the day is fantastic. I rode with a couple of friends who weren’t riding for charity and they were completely in awe of us getting cheered on.”

Carl’s reason for taking part is his nephew. Connor was born prematurely and has cerebral palsy. Connor’s mum, Lauren, explained how they initially found out about his diagnosis through their physiotherapist. “One day I got asked to fill in some forms – I asked her for help because it asked what was wrong with him and I didn’t quite know what to say. She just said “well it’s cerebral palsy” but nobody had actually told us that. We were quite shocked. We just thought it was because he was premature, that he would catch up.”

Connor has received fantastic support from the local community. His first play group had a sensory room and it was here that he first walked – a great milestone when the family had been warned he probably wouldn’t walk or talk. “He walked properly. He was nearly three when he started, the same week as his cousin who was one.”

The family first came across Scope when they were looking for help choosing Connor’s secondary school – the local authority recognised that Connor was bright and wanted to place him in a mainstream school. But Lauren and her husband, Kevin, felt that Connor progressed more with one to one support at a specialist school. Connor went on to prove them wrong, attending the local secondary school and gaining good results in his GCSEs. From speaking to Scope and another charity called Network 81, they were able to encourage the school to make the alterations Connor needed for his education, including having his lessons on the ground floor instead of up two flights of stairs. But now, the real work begins – deciding what Connor should do once he leaves college. Connor is keen to get involved in a local community project, the Harwich Mayflower project, where he can socialise and discuss doing an apprenticeship.

Cricket posterWhen Carl saw that Scope were the official charity for this year’s Prudential RideLondon-Surrey 100, he felt it made sense to do the full 100 mile route with us. “Technically I didn’t complete it last year. It was 87 miles; it wasn’t 100 (due to the weather) so I felt a bit of a cheat.” He’ll be continuing his training and fundraising over the next few months, including a cricket night called Essex Legends, hosted at a local venue.

There’s still time to be a part of Scope’s Prudential RideLondon-Surrey 100 team. Get your place today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike!

I love helping people get things sorted out – #100days100stories

Jackie O’Kelly is a Scope regional response worker for the midlands. Here she shares a typical working day, as part of our 100 days, 100 stories project.  

6.45am I’m up making breakfast , feeding the cat and driving my teenagers to the bus stop for school, then it’s off to work.

I’m able to work remotely at an office in my elderly mum’s house, which is fantastic as I can make sure she’s okay at the same time.

9.00am I’m answering half a dozen emails which came in overnight.

9.30am I get a call from the Scope Helpline letting me know about a referral – I get 15-20 new ones a month. I ring to introduce myself, and we arrange a home visit for later in the week.

I’m working with about 20 people at any time, and lots will keep in touch for months or years as they face new difficulties.

10.30am I make a quick phone call to check in with George, a disabled man who’s applying for Personal Independence Payment (PIP). I’m worried he might be turned down for the mobility payments he really needs, so we’re working together on his application.

11.45am Squeezing in a few more emails. One of the most important parts of my job is pointing people to the right information, whether it’s about their impairment, benefits, local support or funding for home adaptations.

1.00pm A visit to meet Sarah, a mum whose four-year-old boy has just been diagnosed with cerebral palsy. She’d been told for years that nothing was wrong despite her worries, and she’s very upset.

A lot of the work I do is with parents who have a child newly diagnosed as disabled, and this is very much where my expertise lies. I primarily worked in paediatric care when I was an occupational therapist before joining Scope.

Sarah and I talk about the different forms of cerebral palsy and where she can get support. The diagnosis was a real shock and I’m not sure it’s sunk in yet. I’ll get back in touch in a week, and she’s got my details in case she needs me.

3.00pm Back to the office to check on a few more cases.

I’ve been with Scope for 17 years, and a lot has changed in that time. But the needs of disabled people and their families have remained very much the same – the need for information, advice and support.

4.15pm I’m on the phone chatting to a mum about her daughter, who has autism, and she says she’d like to meet some other parents of disabled children.

Luckily I know a dad nearby whose daughter also has learning difficulties. I give him a ring, and he’s happy for me to pass on his number.

5.00pm A last-minute referral comes through – a family with two young disabled kids desperately needing respite care. I spend an hour ringing round different agencies, and decide this needs to be referred to social services. I’ll keep in touch to see if there’s anything I can do.

6.00pm Check my mum’s settled for the evening, then it’s home for dinner with the family and a bit of trashy TV! Working with people going through such difficult times can be draining, but I love helping people get things sorted out. It doesn’t feel like work at all.

For free, independent and impartial emotional support or disability advice, contact Scope’s free helpline on 0808 800 3333 or email helpline@scope.org.uk

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

The financial strain of disability #100days100stories

39 year old Emily lives in Eastbourne with her husband and four children – Lucy, 16, William, 12, Oscar, six, and Reuben, who’s four. Both the younger boys have autism, and Emily has had Myalgic Encephalopathy (ME) for many years, which means her energy and movement have been limited. She is recovering now, and has recently returned to work, but she still uses a wheelchair for long distances. In this guest post as part of our 100 days, 100 stories campaign, Emily describes how her family is trying to meet the extra costs of disability.

Food

The boys have a lot of difficulties with food and there’s lots of wastage. If they get some bread or cake or a banana, they will eat part of a slice, throw it on the floor, get another, and throw that on the floor. They’re also very faddy – one day they want eggs on toast and the next day it’s oranges. Sometimes they won’t eat at all; another day one will eat dinner, but the other won’t.

Clothes

The boys often need particular materials and certain fabrics are a no-no, so we’ve wasted money on things they won’t wear at all. Oscar insists on wearing one sock at night; the other sock gets separated so I end up with a sock nightmare! Reuben loves playing outside in the garden, but will get very muddy, jumping in puddles and sitting down on wet surfaces that other children would probably stay away from at his age.

Washing

We get through a lot of washing powder with extra continence problems. Ozzy is only just out of nappies at six; Reuben still wears them 24 hours a day and he’s four. He has nappy leakages at night, and spills a lot of milk on the bed, so that’s extra washing. The other day Oscar put his hand down his pants and smeared poo in his bed. When Ozzy was in nappies, we would dress him in five layers of clothes to stop him smearing everywhere, but now that he’s potty trained he needs to go to the toilet himself at nights, so he goes to bed in pants and pajamas. It’s a difficult decision between teaching him independence and keeping things clean.

Learning

I’ve tried to get the boys interested in reading since they were babies, but it’s been a struggle. Ozzy’s just started showing an interest, but Reuben’s just not interested because of his speech and language delay – so books end up getting ripped up, partly in frustration and partly from excitement I think.

I have to think outside the box and use online games and reading apps. Both the boys are fixated with screens, so we try to use them productively. If we could afford an iPad with the right apps it could really help Reuben learn to communicate.

Toys and play

Emily's husband and four children on a park bench eating icecream
Emily’s husband and four children

They’re very destructive in their play and exploration, and get through toys like no one’s business. Reuben goes to his bedroom, pulls all the drawers out and empties all his toys on the floor. I think perhaps all toddlers are destructive, but the boys have been in this stage for five years. They also play with everyday items around the house – things from my desk, the kitchen, the bedroom and the bathroom. This isn’t only an extra expense on replacing the items, but also wear and tear on the house.

Supplements

It’s only because I’ve worked hard at trying out different combinations of supplements and pacing my rests throughout the day that I’ve managed to get to a place where I can return to work. I take D-Ribose energy supplement, which boosts energy and recovery. That’s the most expensive, at £18 per 250 ml. Without it, I wouldn’t be able to get out of bed. Then there’s Aloe Vera juice, vitamin D, evening primrose oil, among others. I easily spend £50 a month on the lot, possibly more. They all really make a difference.

Toiletries

I’m really sensitive to chemicals and had to change shampoos and bath stuff to dermatological and natural ingredient products, but it’s very expensive to trial and error those. The boys also get psoriasis and eczema so they need to have special toiletries. The consultant recommended having lavender oil in their bath to try and calm them at night, so I managed to source a big 100ml bottle for the same price as a 10ml. But all this takes time and research, and you’re not always successful finding a good deal.

Travel

To go shopping I hire a mobility scooter, which costs about £100 over the year. We’ve had to replace car seats because Reuben’s an ‘escapeologist’ who manages to get out of most five point harness car seats, and we’ve had to replace buggies over the years. Car parking can be expensive, especially in hospitals. When you’re transporting two autistic boys, public transport is not a valid choice because of the safety issues with the boys running off in a random direction.

Looking to the future

We use the boys’ DLA (disabled living allowance) to help with their care, so we have an extra pair of hands on the school run to keep them safe, and to help us keep on top of the washing, extra tidying and cleaning.

I’m happy to be back working, but the financial state we’d gotten into by me not being able to work was getting really bad, and we were getting heavily into debt. We sold our flat to pay off our debts, and moved into rented accommodation.

If I hadn’t recovered enough in order to be able to get a job, we’d be really struggling still. With both of us working, we can now cover all the high costs of living, and the extra expenses that come with our beautiful boys. We can’t take them to therapeutic groups or swimming in the evenings, as I don’t get home in time; but just like everyone else, we’re doing the best we can with what we’ve got.

Life costs more if you’re disabled. Read more #ExtraCosts stories

Disabled families hit hard by extra costs

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

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

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

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

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

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

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

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

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

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

Priced out: what disabled people told us they pay more for

We launched a report today which shows that disabled people and their families pay more at every turn.

It isn’t only the extra costs of specialist equipment, or having to buy more of things, like heating or bedding. Disabled people are also being charged a premium for everyday items.

We have calculated that disabled people face a financial penalty of on average of £550 per month.

We asked you what you have to spend more on. Thanks for sharing your experiences on Facebook and Twitter – here’s what you told us.

Buying specialist products and adapted equipment 

Disabled people have to buy things that most families don’t have to budget for. You told us just how expensive specialist equipment and products can be.

“I am constantly amazed at the prices I have to pay for items and equipment. I am horrified by what some mobility equipment companies get away with charging.” – Sue

“My orthotic braces don’t fit in normal shoes and slippers so i have to buy them from specialist suppliers. These are MUCH more expensive than normal shoes.” – Fiona

“Why do wheelchair and equipment manufacturers all think that all wheelchair users are lottery winners?” – John

“The special aids are horrendously expensive.” – Jules

Things disabled people need to buy more of

Disabled people and their families often need to buy more of things. This could be a one-off expense, like buying a larger house to store medical equipment, or regular expenses, like taxis to work or higher energy use. Here’s what you buy more of.

“I fall a lot so I need to wash my clothes more often than non disabled people (on average), and my clothes get damaged quicker so need replacing more often. Due to my hyperhydrosis I go through more antiperspirants than ‘normal’ people and have to buy the more expensive super strength ones.” – Fiona

“I have dyspraxia and dyslexia. All my written work is done on my computer and printed out. So I buy more printer cartridges than others.” – Shirley Jones

“I’m physically disabled and have epilepsy so can’t drive – taxis soon mount up!” – Ruth

Paying more for everyday things

You also told us that you are often charged more for everyday things.

” I have to buy concert tickets over the phone instead if internet. Calls are charged at peak.” – Shani

“Companies read “disabled” or “special needs” but hear “keerching!!”. Scandal. Selling an I-Pad? Call it a “Communication Aid” and add a zero on to the end of the price.” – Wag

“Holiday insurance, could not go abroad last time we planned as no one would insure me and include medical problems.” – Helen

“Taxis drivers spend forever with clamps etc and are “legally allowed” to have the meter running either while putting you in or getting you out.” – Jenna

“It annoys me so much that you have to pay more for taxis as a disabled wheelchair user! Also it’s normally only the more expensive companies that have accessible vehicles!” – Adele

“Hospital parking costs a lot more as it takes me longer to get to the appointment and get out again, and I usually have to wait up to an hour for a disabled space at my local hospital. This all adds to the costs you have to pay.” – Fiona

What needs to happen

The extra costs that disabled people and their families face have a huge impact on living standards. Having less cash to spare makes it harder to afford the basics in life, avoid debt, and build up savings.

We think two things need to happen.

The Government needs to protect payments that help disabled people meet these extra costs.

We also need to find a way to bring down the premium that disabled people are paying for everything things.

We are calling for all Government departments to play a part in driving down disabled people’s extra costs. And Scope is launching a commission in the summer, to find ways to reduce the amount that disabled people pay in key areas, including housing, transport, equipment and technology.

Read the report and let us know on Facebook and Twitter what extra costs you face . Read the story on BBC News.

Priced out: ending the financial penalty of disability by 2020

Earlier this month Scope released the first in a series of reports that look in depth at the challenges within disabled people’s living standards.

When we talk about improving living standards in the UK, we often think of economic growth, prices and wages. But what is rarely recognised is a problem that affects disabled people’s living standards that pre-dates the recession – one owing to the additional costs of disability.

Today, we launch the second in our series of reports – Priced Out: ending the financial penalty of disability by 2020. The report brings together new research and analysis to investigate the extra costs disabled people face and how to tackle them.

Disabled people pay a financial penalty on life, which can be because of:

  • Having to buy more of everyday things (like heating, or taxis to work)
  • Paying for a specialist items (like a wheelchair or a hoist)
  • Paying more than non-disabled people for same products and services (like insurance)

On average disabled people spend £550 per month on disability related things.

Over 20 years ago – recognising this financial penalty- a Conservative government introduced Disability Living Allowance (DLA) to help cover the extra costs of disability.

Yet disabled people still feel their effects and:

Not only is financial instability bad for disabled people, but as people in the UK are living longer failing to address the problems posed by a growing, and significantly under-pensioned segment of the population, will have ramifications for the living standards of the UK as a whole. Tackling extra costs is therefore a policy imperative.

With a general election rapidly approaching, and with signs of economic growth in the UK beginning to show, there is an opportunity for political parties to set out what they will do to end this financial penalty by 2020, and make sure that disabled people are part of fair, inclusive growth.

Protecting crucial extra costs payments

DLA has been crucial for disabled people to lead independent lives, to take up opportunities, increase their own income and contribute to their communities.

But recent and planned welfare reform threatens these important payments.

DLA is being replaced by Personal Independence Payments (PIP). But PIP assessments do not ensure those who need support get it. 600, 000 disabled people are set lose DLA through its reform.

And in the Budget 2014, the Chancellor announced that starting in 2015-16 an overall limit of £119.5 billion will be placed on parts of social security spending.DLA and PIP are planned to be within the cap and are at risk of being cut because of it.

We recommend:

  • Last week an independent review of PIP assessments was announced. We call on the Government commit to replacing the current assessment of extra costs with a new one that more accurately identify disabled people’s extra costs.
  • The Government protect extra costs payments such as DLA and PIP by taking them out of the cap or ring-fencing them within it.

Making extra costs payments go further

 Extra costs payments do not go far enough. DLA and PIP do not cover all extra costs. Therefore disabled people are still more likely to be in debt and unable to build savings and contribute to pensions.

We recommend:

The Government make extra costs payments go further by committing to an extension of the ‘triple lock’ guarantee on pensions to extra costs payments in the next parliament – meaning they will rise by the highest of prices, earnings or 2.5% each year.

Driving down extra costs

Where extra costs can be driven down, they ought to be. Currently, only the Department for Work and Pensions (DWP) has responsibility for tackling the problem of extra costs. But in reality, all departments have a role to play. For example, research shows that inaccessible housing can dirve up contribute extra costs.

We recommend:

The Government and all political parties commit ensuring truly cross-departmental policy-making to identify and drive down the root causes of extra costs by placing the Office for Disability Issues (ODI) in the Cabinet Office.

Often things disabled people need to buy are very expensive – such as £3500 for a Lightwriter which turns text into speech. Affordable products to adapt mainstream tablets (which cost between £200 and £600) are not commonly available. And sometimes disabled people have to pay more for things just because they are disabled – for example facing large supplements for travel insurance based on their condition.

We recommend:

The Government, business and regulators re-balance markets so that they work better for disabled people. For example the Government should create a new funding stream as part of the Growth and Innovation Fund (GIF) from the Skills Funding Agency which invites employers in the relevant sectors to apply for investment in skills of their workforce, specifically to innovate for disabled people.

This approach will go some way in ending the financial penalty disabled people pay by 2020. This will raise disabled people’s living standards, and ensuring there is fair, inclusive growth which does not leave disabled people behind.

Later this month Scope will publish the third in this series. It will look at what the Government can do to create better job opportunities for disabled people.

In the Summer Scope will be launching a Commission on Extra Costs to investigate why there is a premium attached to the goods, services and infrastructure (housing and travel) disabled people use and what can be done to bring them down.