“I’m 22 and financially screwed” – help us tackle the disability price tag

Our new report The disability price tag highlights how disabled people on average face extra costs of £570 a month related to their impairment or condition. Many disabled people have shared their experiences of extra costs with us, and the impact that this has on their lives. It’s an injustice that needs to change. In this blog, Piers, a student in Wales, shares his experience. 

I’m currently studying for a Masters in Physical Oceanography. Being at university, surrounded by my non-disabled peers, has really highlighted the sheer amount of extra money that I have to spend, just because I happen to use a wheelchair.

“I’d say that every month I have an extra cost of about £1300 compared to my non-disabled friends.”

Firstly, my wheelchair itself was incredibly expensive and I had to pay for that myself. The wheelchair offered by the NHS was unsuitable for my needs, so I had to pay over £4,800 for one just to be able to get around and go to lectures just like everyone else.

On top of that, on average, I spend another £300 a month replacing parts and maintaining the chair. Even with this upkeep, it needs to be completely replaced every three or four years.

My housing is also more expensive than my friends – the only accessible student housing available is £110 per week, whereas friends of mine pay as little as £40 a week for similar housing.

Travel costs are increased due to the unreliability of public transport, the nature of hills in North Wales and the location of my lectures. I have to spend about £400 a month on taxis just to get around.

Food costs are also higher. I require easy to prepare food, either pre-chopped or in small quantities. My friends can buy items like pasta in bulk or do a large shop and carry it home. Unfortunately as a wheelchair user, it’s really difficult to manage more than a small basket of items whenever I go shopping. So this can increase my monthly bill compared to my friends by an extra £150.

Related to that, because so many shops aren’t accessible, I have to order a lot of the things I need online and get charged for postage. It may not seem much per item but all of those payments add up over the year.

Man holding a basketball on a court playing wheelchair basket ball

Financially, I’m screwed

My income each year is decreasing. Even with a student loan, Disabled Students’ Allowance and Personal Independence Payment (PIP), I still face a monthly shortfall.

It plays havoc with my social life because I can’t afford to do much, and if I do anything I’m worried about its cost. I have to take almost every freelance opportunity to earn any money I can to try to keep myself afloat, which impacts on my studies.

It’s socially exclusionary as well because my friends stop asking me to go do things with them because they assume I can’t afford things, which means I do even less.

Basically I’m 22 and financially screwed. It’s almost impossible to get a part time student job just because I use a wheelchair. I’ll be leaving university with at least £130,000 debt.

Man on a beach in a wheelchair next to a sign that says 'seating on promenade prohibited'

What needs to change

Firstly, businesses have a huge role to play. I’d love it if the items I needed to live independently weren’t extortionately priced. Companies know that as a disabled person I need the item so they can charge whatever they want. And there should be no delivery charge or a minimum spend for disabled customers.

There should be increases to PIP so it’s in line with the reality of these extra costs and investment into accessible housing so that it isn’t a quality that increases prices of housing astronomically. I also want to see the NHS bespoke wheelchair service restored and free NHS treatment – this would greatly reduce my extra costs.

Related to this, there’s the issue of employment. Extra costs aside, people rely on employment for financial security, yet there are many barriers to employment for disabled people – employers’ attitudes and discrimination being one of them.

Help us tackle the extra costs faced by disabled people. Find out more about extra costs, then share our report on Twitter or Facebook.

You can also read more stories or share your own experiences in our extra costs discussion on the community.

Tackling the price tag of disability

Life costs more if you’re disabled.

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

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

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

The financial penalty of disability

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

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

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

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

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

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

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

What are the types of extra costs disabled people face?

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

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

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

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

What needs to change?

We cannot afford to ignore this problem.

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

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

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

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

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

What will we be doing next 

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

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

What do recent announcements on PIP and ESA mean for disabled people?

Our welfare system plays an essential role in supporting disabled people to be more financially secure.

Personal Independence Payment (PIP) for instance helps disabled people to cover some of the additional costs faced as a result of an impairment or condition. For disabled people who are out of work, Employment and Support Allowance (ESA) is important in helping to meet day-to-day costs.

Over the past few months there has been a lot of attention on PIP and ESA. Here we look at what’s been happening and what these changes mean for disabled people.

High Court ruling on PIP

Back in April 2017 the Government made changes to PIP that tightened up access to the payment for many disabled people. We campaigned against these changes, which made a crude distinction between people with physical impairments and mental health problems.

Then, in December 2017, the High Court ruled that some of these changes were discriminatory and should be scrapped.

The Government last month said that it won’t be appealing this decision and that it will be reviewing all decisions relating to PIP awards since the payment  was introduced.  They estimate that up to 220,000 disabled people will receive backdated payments where necessary.

This is a welcome decision, as we know PIP is a lifeline for disabled people. In research we carried out with over 500 recipients of either PIP or DLA, 58 per cent said that even a small reduction in their PIP award would have a significant impact on their ability to live independently.

What does this mean for disabled people?

  • The Government will review all PIP assessment reports to identify individuals who could be eligible for a backdated payment.
  • This includes people who were not eligible for PIP following an assessment.
  • No one will need to go through a repeat assessment.
  • The Government has not yet announced when the review will start, or in what order claims will be reviewed.

PIP and ESA assessments

This week, the Work and Pensions Select Committee published a report following an inquiry in to how PIP and ESA assessments are working for disabled people.

This made recommendations to Government to improve the way that applications and assessments for PIP and ESA are carried out, such as using more accessible forms of communication and offering home assessments.

The Committee also put forward ideas to make sure decisions about disability benefits are fair and transparent. These include recording assessments, letting claimants know which pieces of evidence have been used to make a decision, and allowing individuals to review their report during the assessment.

We welcome this report and want to see Government act quickly to put these measures in place. However, it is clear that both the PIP assessment and Work Capability Assessment (WCA) for ESA are not fit for purpose and need urgent reform.

We want to see the PIP assessment replaced with an assessment that properly identifies the range and level of extra costs disabled people face.

We also want to see the Work Capability Assessment replaced with a new approach which recognises the full range of barriers that prevent disabled people entering and staying in work.

Reforming both of these assessments is crucial in ensuring disabled people are getting the right support – whether with disability-related costs or whilst out of work – and are able to live independently and participate fully in society.

What will we be doing next?

It’s vital our welfare system works for disabled people. Following the Government announcement on PIP and the Work and Pensions Select Committee report, we will be continuing to campaign for reform of both the PIP assessment and the WCA

If you have any concerns about your payments, you could contact Scope’s helpline for free for more information

Any new assessments need to be shaped by disabled people’s experiences. We want to hear about your experiences of applying for PIP and ESA. If you’d like to share your story, please comment below or email stories@scope.org.uk.

Just because I’m disabled, doesn’t mean my boyfriend has to be

Online dating has opened up new ways for people to meet and find love but for disabled daters it also brings preconceptions and challenges. For Valentine’s Day Michelle from Liverpool shared her experiences with us.

At school I was very sheltered, I never felt disabled until I went to a mainstream college. Nobody else in my class was disabled and it was a bit of a culture shock. I was in a class with 17 other girls and as difficult as it was for me, I also think it was difficult for them because they’d not grown up around someone who was disabled.

A lot of people I was around in college believed that if you were disabled you’d never have a boyfriend or never want a boyfriend. They’d say things like “you haven’t got a boyfriend, have you?” but actually, at the time I did. When they found out they’d then assume that obviously he must be disabled too. But just because I’m disabled, doesn’t mean my boyfriend has to be and in fact, he wasn’t.

Once you talk to a person and they get to know you, they get to know you as a person and it’s a lot easier to break down those barriers. But unless they take the time to get to know you, it’s hard. That can be especially hard when it comes to dating.

Woman smiling
Michelle’s had some awkward dating experiences

I was born like this, it’s not special, it’s not different, it shouldn’t be an issue

I’m single at the moment and I do find dating difficult. Online dating is particularly awkward as I have to explain that I’m disabled. If you walk up to someone in the street they can see it straight away but online I never really know what to say because to me it’s not spectacularly different. I was born like this, it’s not special, it’s not different, it shouldn’t be an issue. But you never know how someone else is going to react.

Whenever I meet someone online I let them know I’m disabled by saying ‘I’ve got Cerebral Palsy which means I’ve got a slight limp.’ One time I went for a drink with a guy I met online and when I got there he said to me:

“You said your limp wasn’t really that bad but it is.”

I was like wow, what do you even say to that? I said, “no I don’t think it is that bad”. In what world is it okay to say that? You would never say to someone, “you’re not as good looking as your picture”. Unsurprisingly, I didn’t see him again after that.

I think it would help if people were generally more open minded about who they date; get to know the person, don’t be so superficial. I know to a lot of people looks are really important – and they are to me too – but if more people got to know a person rather than basing everything on what they look like it would make things a lot easier.

It’s important to find someone attractive but looks fade and a personality doesn’t. If you’re going to be with that person, they’ve got to be a good person. To me that’s a lot more important than what a person looks like.

Dating will always be difficult whether you’re disabled or not. I don’t think there’s anybody who doesn’t find it awkward. But if you do need some advice then Phil Lusted’s tips to end awkward dating moments is a good place to start.

I haven’t got anything planned for Valentine’s Day this year, I’ll probably watch a film and eat some ice cream. It’ll definitely be a lot better than some of the recent dates I’ve had.

Want to read more, check out our A to Z of sex and disability. 

You can also discuss sex and relationships on the online community.

 

Letter to Louis: a mum’s story of her son with CP

“I’ve never quite known how to explain what our daily life is like. I wanted to write how it is in order to give others a greater understanding of disability and caring. And to be totally honest, I wanted to write something that would make people consider being Louis’s friend. So here is me introducing you: Louis, this is your story. Readers, this is my son.”

Fighter

Alison White’s memoir of bringing up her son Louis covers the first 18 years of his life. It’s written to him, even though he doesn’t have the capacity to understand his mother’s writing.

From the beginning Alison White is brutally honest. When she first sees her son in the intensive care baby unit, she thinks, “I would not have chosen you.”

The name Louis means ‘fighter’, according to the baby names book Alison and her partner Greg used. It proves to be prophetic. His first Christmas present is to be able to come off oxygen and to bond with his mother for the first time.

The things people say

One of the things that I found most shocking about the book is the callousness or perhaps carelessness of people’s reactions to a mother with a disabled child:

  • The woman from the parents group talking about how ‘perfect’ her own child is.
  • The nurse who calls Alison ‘Ermintrude’ when she brings her expressed milk to the intensive care baby unit.
  • “Look at him. That’s an apology, that is!” says another nurse.
  • From Louis’s own grandmother: “There’s something not quite right about him. He’s not like any baby I’ve come across before.”
  • The homeopath who attributes Louis’s cerebral palsy to his father not being present at the birth.
  • The shoe shop worker who says that it is not her company’s policy to sell shoes to people who cannot walk in them!

Celebrate every step

Scope used to have a child development tool called Celebrate Every Step. This was a way of marking the tiny developmental milestones that were missed by mainstream ways of assessing child development.

After so many battles, Alison begins to see the way forward:

“All those things that we take for granted like being able to walk, play, write, get dressed, wipe our bums, brush our teeth, tie our shoelaces, chew our food, blow our nose, lick our lips. You still can’t do any of these things. We help you to do everything and little by little, at a pace that is imperceptible, we make progress with some things. Other things will never come. The damage is done.”

Alison finds a music therapist from Nordoff Robbins who unlocks Louis’s love of music. Louis can sing his own name before he can say it. As Louis begins to express himself, his personality and his obsessions come to the fore. He likes to carry maps with him wherever he goes. His bedtime routine consists of his mother having to pretend to go for a bike ride before he can settle.

Presents of life

Louis’s birthday wishes become more and more eccentric: for his 10th birthday he asked for a Henry Hoover; for his next he wants an escalator! One Christmas he asked for a Soundbeam, an inclusive musical technology system used in sensory rooms which costs thousands of pounds. When his mother tries to explain that this is impossible, his response, which could almost be the motto of this book, is: “You could try.” Alison does try. She contacts Soundbeam who offer to lend a system over the Christmas holiday so Louis does get his wish: he gets a Soundbeam for Christmas!

18 plus?

For his 18th birthday, Louis and his mum get an unwanted present: no more respite.

“As you turn at 18, as we were told, are respite has been cut to nothing, gone. Yesterday you were a child and today you are an adult and everything will change with social services again but nothing has changed with you. You still need all of your care, but nobody seems to be able to tell us anything. We are not going to worry. We are having a party and your parties are known as the best.”

Letter to Louis by Alison White is published by Faber on 2 February 2018.

Win a copy of the book!

We have 10 copies to give away. To be in the draw,  post the things people say to parents of disabled children on our online community. 

Terms and conditions

Only one entry per person will be counted. The prize draw closes on 10 February 2018 at 10am. The winners will be chosen at random after this date and notified via social media. Books can only be posted to addresses in the UK and no cash equivalent or alternative prizes will be offered. This prize draw is not associated with Facebook or Twitter.