Tag Archives: Personal Independence Payment

“I can’t live the life I choose without PIP.”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility. She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

Following Scope Chair, Andrew McDonald’s comments on how the benefits process is a ‘hostile environment’, Josie describes her experiences of the PIP process.

I cannot live the life I choose without Personal Independence Payments (PIP).

I need a carer to go out anywhere and, beyond local, basic shops (many of which I can’t access), I need a wheelchair accessible taxi. This carries an extra surcharge of £10 to £20 per trip in most areas.

I pay towards my care and need to provide all materials. Without PIP, I would not be able to even meet my basic bills. This is before you consider anything fun. My bills are so much higher than an average household my size.

Josie, a disabled woman, smiles at the camera
Josie has had a negative experience of the PIP process

You feel on edge all of the time

The whole PIP process is very disjointed. Many would think the Department of Work and Pensions (DWP) and PIP were the same department. No. If you communicate with PIP or the assessors, they don’t share any systems so two calls are needed. When you’re already poorly, the energy to make several calls is a lot. Most days you just have to pick between the most important calls.

You feel on edge all of the time. When I was in hospital, they sent an assessor. Thankfully, he rang the day before so it didn’t count as me not meeting the appointment. Had I missed that call, it would have and I would have been sanctioned.

When I was discharged, I rang them to get a new date. I took a cancellation which meant I didn’t have to wait many stressful weeks. I had one home assessment, but then they lost my file. They rang me and told me that I had to repeat the whole home visit again. This was really stressful.

The assessments are stressful

I’ve had so many assessors tell me that “they understand”. They don’t. They can’t. Their ability to keep a roof over their heads is not dependant on this assessment. Not to mention the reality of living day to day with an illness and disability.

The assessors were scripted. Professional but formal. I found it hugely stressful and can’t imagine how anyone with mental health issues, developmental delay or dementia would cope. I was scared anything I said would be written down differently to what I meant. I was petrified I would have to appeal and a tribunal would happen.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie, who is severely allergic to a long list of different things, wearing her face mask

I’m housebound and allergic to the world. Stress alone could land me in A and E with a life-threatening reaction. This was completely unknown to the assessor when they arrived. It upset me for four months after my discharge. I cried with relief when I got the award letter because the practicalities of me attending a tribunal seemed impossible.

I did not trust the PIP process at all. Despite having Disability Living Allowance (DLA) for eight years, the whole assessment started from scratch. Mother’s maiden name, date of birth, everything. It’s almost like you have never claimed at all.

I felt like I was once again having to prove my illness and disability.

What are your experiences of the PIP process? Share your experiences on our Facebook page or by emailing us at stories@scope.org.uk.

The system’s not about people, it’s about money – #100days100stories

When Kenneth moved into a care home, he imagined gaining independence and the chance to learn new skills. What he got was a very different situation. Kenneth shares his story as part of our 100 days, 100 stories campaign.

Kenneth wearing a baseball cap smiling at the cameraI left home when I was 19. Like anyone else, I wanted independence and my own space. I wanted to choose what time to get up in the morning, what to have for lunch – simple stuff like that.

I moved into a bungalow with three other young disabled people. We had staff on site 24 hours a day to support us. I thought it would be great, I really did. My dream was to make friends and have a social life. Maybe go on holiday with my new housemates.

After a few weeks, I realised something didn’t feel right. For a start, everyone was in bed by 8.30pm. Why would you go to bed so early every night? It turned out my new housemates had no choice – they were being ‘put’ to bed early, even if they didn’t want to go.

Nobody was listening

I wasn’t getting the support I needed either. I wanted to cook my own dinners and to get out more in my car, but that wasn’t happening. I felt powerless because nobody was listening to me.

The days were long. I work so I could get out of the house but the others spent a lot of time watching TV. I remember coming home to find one of my friends, a girl who uses a wheelchair, sitting at the kitchen table with nothing to do. She’d just been left there on her own. Another time I came home to find two of my housemates with their wheelchairs facing the wall. I don’t know how long they had been like that – hours maybe.

A modern day institution?

When people think about institutions, they imagine these big old buildings with lots of residents sitting around doing nothing. But we were living in a brand new, purpose built bungalow and it was just as bad. It’s not how it looks on the outside; it’s how it’s run on the inside that matters.

Despite my mum and social worker getting involved, nothing changed at that place and I moved out. Now I live in another bungalow with 24-hour support. It’s not perfect but it’s a lot better.

In the future, I’d like to live on my own and have a personalised budget so I can choose the care I need. I’d like live-in support workers so I can do what I want, when I want. Personalised budgets are available where I live but disabled people are still getting stuck in homes because it’s the cheaper option.

Less choice over our lives

The system is so wrong. It’s not about people – it’s about money. Our social care and benefits have been slashed which means young people like me have little choice over our lives. Through my job at Change.org, I met Norman Lamb MP, the Minister of State for Care and Support. As I told him about my experiences, I started crying. I couldn’t help it. I hope what I told him has got through. Something has to change.

Find out how you can get involved in our 100 days, 100 stories campaign and read the rest of our stories so far. 

What makes me frustrated? People not listening to me – #100days100stories

John lives in a shared house in Hereford, with support from Scope staff. We first shared his story in December 2014, and we’re republishing it here as part of our 100 Days, 100 Stories campaign.

The night before John and I met, he hosted his 50th birthday party in a local social club. More than 100 people came, from all parts of his life – friends, people he’d met while volunteering, support workers, even his fitness instructor.John in a coffee shop near his home

John lives in a supported living house run by Scope in Hereford, and has chosen to share with two others rather than live alone. He has cerebral palsy, uses an electric wheelchair and has learning difficulties.

Becoming more independent

I met him, along with Lottie, who manages Scope’s service in Hereford, in the café of a theatre near his home. John arrives dead on time, unsupported and under his own steam. When we’re settled, Lottie reminds him that this wasn’t always the case.

“We worked together for about two years, learning how to go independently in and out of town. We’d go into town together – I used to sit in a coffee shop in the centre of town, and you used to go off and cross the road to the newsagents and then come back when you’d bought whatever you needed to buy”.

“We did that for 12 months – you’d have different tasks to do, going into WH Smiths or the bank, and things like that.”

“[Now] I get it all by myself,” adds John.

“You do a lot of things yourself now. Whereas if you go back 10 years, you would have probably spent about an hour a day on your own, and that was only at home, never out. You’ve learnt these skills.”

John and Lottie have worked together for 20 years, and tJohn in a coffee shop near his homehey have a strong mutual understanding. Lottie encourages John in the conversation as talking is quite difficult for John, but he listens and often adds his own thoughts.

Leaving residential care

As a young man, John lived in a large care home for disabled people. It had more than 60 beds, and was out in the countryside miles from the nearest town. John had little control over his day-to-day life and most decisions were made for him, from what to eat to what time to go to bed.

“[It was] horrible. You couldn’t do nothing. There was no town to go into. You’d have to ask the staff to take us out in the van,” he says.

John lived there until his mid twenties, when he moved to a house run by Scope’s community support service. He later became a tenant in the house, which means he can change his care provider if he chooses without having to move out. He pays for his team of support workers out of his personal budget, signing the cheques himself.

“I like to choose”

He is involved in all kinds of activities – from gardening at a local college to wheelchair football, to a music club where he volunteers to collect members’ subscriptions and take the money to the bank. During our conversation, at least half a dozen people stop to say hello to him.

“[In the future I’d like to] do more, like I am now,” he says.

Towards the end of our talk, Lottie asks John what makes him frustrated. “People not listening to me,” he says. “I like to choose. My own food. Be treated normally.

“I do things by myself, but there’s someone there if I need them.”

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

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.

Cap on over £100 billion of welfare further threatens disabled people’s living standards

Today, The Chancellor announced details of the planned cap on Annually Managed Expenditure (AME). Currently, the social security budget has the flexibility to respond to the needs of the economy and the people within it. In the Autumn Statement today we learnt this may no longer be the case.

At the beginning of each Parliament the Chancellor- with support from the House of Commons – will place limits on social security spend. Set in 2014 for the four years following, the cap will cover more than £100 billion welfare spending.

The basic state pension, Job Seekers Allowance (JSA) and JSA-pass ported benefits will be excluded from the cap. But all other benefits – including Disability Living Allowance (DLA), Personal Independence Payments (PIP), Tax Credits and the majority of Housing Benefit – will still be in the cap.

What does the cap mean?

Raising the stakes

A breach of the cap will trigger a debate and vote in the House of Commons. This will further raise the stakes for policy-makers who want to ensure they can provide the right support for disabled people.

Welfare trade-offs

Housing Benefit and tax credits are counter-cyclical –they may rise sharply if the economy falters. If the economy takes a downward turn, ministers bound by the cap will be forced to pitch them against disability benefits in their decisions to bring down social security spending.

Today Osborne argued that including state pensions within the cap would mean “cutting pensions for those who’ve worked hard all their lives because the costs on, say, housing benefit for young people had got out of control.” Meanwhile, disability benefits which help many disabled people work and live independently – appear to be fair game.

Short-termism

The cap installs yearly limits to social security spending. Instead of tackling the drivers of it, ministers will be compelled to make quick, top-down cuts wherever they can.

Scope have long-argued that continued investment in social care, better employment support and proper support to cover the extra costs of being disabled would all be more effective in meeting disabled people’s needs and driving down costs than any cap on AME.

This autumn, the Chancellor has celebrated growth and responsible recovery. But it is a recovery that will not benefit disabled people. Instead disabled people will face yet another squeeze on living standards, and further exclusion from local communities and the wider economy.

DLA and the road to independence

The game changers

Amy

Amy Jones is a disability rights activist with cerebral palsy. She’s passionate about social justice and cake. She is also the author of the blog In Bloom.

Disability Living Allowance (DLA) – We’ve probably all heard of it, but not everyone knows how much this benefit means to disabled people. As a young lady with cerebral palsy, I want to share with you how precious DLA has been for my independence and ambitions. In case you don’t know, DLA is paid to disabled people to help towards the extra costs of their disability and to enable them to cope with the daily challenges their disability presents. In my case, DLA enabled me to move away from home and go to university. DLA gave me access to social care, which meant that I could get help with dressing, preparing food, food shopping, and household chores. Without this help, I would not have been able to go to university and fulfill my lifelong ambition of getting a degree, simply because I would be unable to perform the basic aspects of daily living.

I knew from a young age that a degree could prove invaluable for my future employment prospects, being physically disabled, I realised my options for jobs were limited. So DLA will probably inadvertently help me get a job because it has enabled me to go to university and study for a degree which will make me employable.

My story is not unique, DLA helps disabled people participate in society. It gives them help with daily living. It enables employment and education. And it allows disabled people to meet their friends, go places and better manage their disabilities. Put simply, DLA is the fabric of a compassionate and civilised society because if you remove disabled people’s DLA, you are actively removing their support, which will stamp out their dignity, independence and ambitions.

If you would like to submit your story or find out more about the Game Changers community, visit the Game Changers website.

An Annually Managed Expenditure (AME) cap could mean further cuts for disabled people

Nearly a week on from the Spending Round, there has been time to think about what a welfare cap might mean for disabled people.

In last week’s Spending Round, the government announced that – for the first time ever – there will be a cap in the UK’s welfare spending through changes to Annually Managed Expenditure (AME). This part of the budget responds to the needs of the economy, and the people within it. So if one year more people need benefits, pensions or tax credits – AME makes sure they get them.

But all of this is about to change. In 2015 the government will put a limit on how much it will pay out in social security.

And disabled people aren’t protected.

State pensions will be excluded from the cap, as will Job Seekers Allowance (JSA), but disability benefits, housing benefit, tax credits, and pensioner benefits will all be included.

How will the cap work?

It will be set as a limit each year at the time of the budget statement, starting in April 2015.

After that, if the government looks like it is about to spend beyond the cap, a public warning will be issued by the Office for Budget Responsibility (OBR) .

Ministers will then be faced with a difficult decision; refuse to meet the needs of those in the worst situations in our society, or publicly breach the cap.

What does it mean for disabled people?

Disability benefits such as Disability Living Allowance and Personal Independence Payments – which go towards covering the extra costs of being disabled – will be vulnerable to the cap. The amounts spent on Employment Support Allowance, too, will be subject to these limits. Universal Credit  will subject to the cap as well.

The Chancellor wants to exclude the “most counter-cyclical elements” from the cap – those which rise most sharply when the economy falters. But the need for Housing Benefit -which is included in the cap – increases during recession. If the economy takes a downward turn, the cap will pitch disability benefits against Housing Benefits in an innappropriate trade-off.

Disabled people are already set to lose over £28bn through welfare changes. The cap on AME comes as yet another blow to the their living standards.

Yesterday the Chancellor announced a £3.8 billion investment in social care –  the support disabled people get from their council to get up, get washed and dressed, and live independently. But by placing arbitrary limits on the amount spent on welfare, without the right safeguards, the government risks wasting these investments, and disempowering disabled people completely.

The chancellor promised that “those with the broadest shoulders [will] continue to make the biggest contribution to fiscal consolidation”. But in reality it is those most in need of support who will bear the burden once again.

Most of all, introducing a cap will radically change the meaning of social security. Without budgetary flexibility, which responds to the needs of the society, the government will risk punching yet more, deeper holes in the UK’s social safety net.

What do you use DLA for?

On Monday, the Government will start the process of replacing Disability Living Allowance (DLA) with a new benefit called Personal Independence Payment.

We asked our Twitter followers what they use DLA for. Here’s what they said:

http://twitter.com/megandoodah/status/320210486165643264

http://twitter.com/LyricalWarrior/status/320185069794885633

http://twitter.com/slhyde/status/320180293615095808

http://twitter.com/slhyde/status/320180856163561472

If you receive DLA we want to hear about the difference it makes to your life.