Tag Archives: costs

T-shirt making day launches 550 Challenge Campaign

Life costs £550 extra a month for disabled people. It is time to get Britain talking about it. In this film Office actress Julie Fernandez launches our 550 Challenge campaign with a t-shirt making day.

If you’re looking for inspiration for your own 550 Challenge check out the gallery to see some of the Challenges that people from across the UK have been coming up with.

Remember to send your Challenge to 550Challenge@scope.org.uk or share it on social media with #550Challenge to see your picture on our gallery.

Living Costs: My Disability Shopping List

A guest blog by Martyn Sibley

I have been what is known as “disabled” my whole life. Oh, how we love labels! I have a genetic condition called Spinal Muscular Atrophy, which means I’m about as physically useful as a chocolate teapot.

On top of this potentially dire situation, let’s look at my disability shopping list:

  • Accessible housing: Very difficult to find, never cheap and usually requiring ramps and adapted bathrooms/kitchen after moving in.
  • Equipment: Electric bed (for comfort and pressure sores), electric wheelchair (for independent mobility), a hoist (to lift me), shower chair on wheels (to not smell), kitchen gadgets (a Kettle tipper, for example), and much more.
  • Social care: The recruitment, training and salary costs of employing people for my independent living needs. Tasks include; dressing me, personal hygiene, house chores, using the toilet, going to work, seeing friends and turning me at night. Plus their additional costs when on shift (food, accommodation, travel, leisure).
  • Health: Physiotherapy and swimming are very important. Prescriptions for antibiotics are required more than average in winter.
  • Other living costs: Higher utility bills to stop winter colds, charge electric equipment and for higher water usage. Costs of servicing equipment. Accessible transport is often more expensive than inaccessible options (see London’s tube map). Accessible holidays have a higher mark up too.

I could go on and on…

Funding

Fortunately, parts of this are covered by government funds. I get support in certain areas because I’m more “disabled” than average, because I understand my rights, and in some ways because I’m “lucky” with the postcode lottery we play.

If anyone narrow minded goes crazy to you about the costs of disabled people on the government, please tell them this: Unless death or social isolation is your thing, investing in us is not just right, but also better for everyone.

From being independent we are healthier and happier, saving future costs of hospital admissions and GP time. We can work, spend our money in the economy, contribute tax and share our skills/knowledge/experience for others to use. We also employ people with the social care money who also spend in the economy, pay tax and are valuable assets to society.

Despite the government funded support, there is a lot of costs not covered. Granted the Disability Living Allowance is in recognition of our extra costs. Unfortunately the maths still shows that we struggle to break even. And when we do succeed, the system takes it back again.

Other costs

For me there are mental and emotional costs of all the bureaucracy too. The form filling, meetings, reassessments, employment responsibilities, silly rules, threats of budget cuts and actual cuts. All on top of trying to just live a “normal” life.

Finishing on a positive note

Beyond the social stereotypes we face, and partly because of the support I have; I attended mainstream school, had non-disabled and disabled friends, did everything my family did, went to university, got drunk, lost my virginity, learnt to drive, graduated, worked in Human Resources and as a fundraiser for Scope for 6 years, went onto co-run Disability Horizons, travel the world and change it in my own little way.

On the one hand I hope my experience shows what is possible with the rightful funding, resilience, and a positive attitude. Equally I want to show the unnecessarily difficult reality of being disabled in 2014. Furthermore the possible regression we are facing going forward with policy suggestions. Only next year am I given big fears, doubts and worries about my personal finances and disability support package once the Independent Living Fund closes.

I’d love to hear about your life ambitions, hurdles you’ve overcome, your higher costs of disability, and achievements despite the struggle.

Martyn

What are your experiences of extra costs? Let us know in the comments below or find out about the Extra Costs Commission.

The 550 Challenge – on your marks, get set, go!

Ride more than 80 miles on a bike. In the pouring English rain. With no breaks.  Sounds exhausting, right?! What could be an even bigger challenge than that?

Yesterday thousands took part in Ride London, cycling the distance from the capital to Surrey and back, to support causes including Scope. It’s a tough challenge but after they’d passed the finish line we asked them to go one step further…

The 550 Challenge

Ride London participants were some of the first people to take part in a new awareness-raising campaign – the 550 Challenge. What’s it all about?

Life costs more if you’re disabled. From speaking to disabled people around the country, we’ve found it costs an extra £550 a month on average. Those extra costs could be anything from transport and taxis to get out and about, to an adapted knife and fork so you can eat.

As you can imagine, being that much out of pocket is having a big impact on people’s lives. This has to change – and it starts with getting the word out.

We want to raise awareness of the £550 extra disabled people are having to pay – that’s the big challenge. To do it we’re asking people all around the country to take a photo or a video of themselves with “550” in it and share it on social media. Together we can get Britain talking.

The tired cyclists at Ride London did a brilliant job of getting the ball rolling! Here are just a few of our favourites:

Two women and a man holding two big 5s and a bike wheel to make "550"

A man holds two big 5s and a bike wheel to make "550"

Man holding two big 5s and a bike wheel in vertical row to make "550" Two women holding two big 5s and a bike wheel to make "550"

A woman and three men hold two big %s and a bike wheel to make "550"

Are you up for the challenge too?

If they can do a great “550” photo after riding all day in the pouring rain, you definitely can too! There are loads of easy ways to take part.  You could:

  • Draw a 550 sign
  • Decorate a cake with 550 icing
  • Set yourself a 5 minutes 50 seconds challenge (or 550 metres or even 550 miles!)
  • Or whatever you like that’s 550 – get creative, get active, get together with friends or colleagues!

Then simply:

  1. Take a photo or video.
  2. Share it on Facebook or Twitter and include www.scope.org.uk/550 and #550challenge
  3. Email it to us campaigns@scope.org.uk

We’re looking forward to seeing what you can do! See more 550 pictures, find out more about the 550 Challenge and our extra costs campaign.

The Price is Wrong!

Today we’re launching The Price is Wrong, an interactive online quiz that aims to raise awareness of the extra costs of being disabled. Working on this game over the past weeks has had a particular resonance for me.

Growing up with a disabled brother, it was evident from quite early on that there were massive differences in the cost of bringing us both up. This ranged from the extra costs my parents incurred driving him to regular physiotherapy and hospital appointments hours away from where we lived, to the cost of higher ticket items like the sports wheelchair he needed to compete on a wheelchair basketball team as a teenager.

The biggest unfairness that remains with me was the cost of our bikes. I was given my first bike for my 7th birthday, a purple and white “Miami Miss” BMX. As well as making me look cool – or so I thought – it was the extra independence from mum and dad and the chance to speed off with my friends that meant so much to me.

For my brother, this vital step took much longer to arrive. Not because he wasn’t able to ride a bike – he was – but because our parents just couldn’t afford the expensive, adapted trike he needed. His first bike was a clunky contraption that wouldn’t have looked out of place in a catalogue for surgical equipment. It had manual controls, looked a bit like a white, mobility scooter without the motor and lacked any kind of street cred whatsoever. It was also dangerously unstable and when he cracked his head open racing me and my Miami Miss downhill, was soon relegated to the garage. It wasn’t until he was 11 – four years later – that we finally had the money to afford a proper adapted trike, something that should be a rite of passage for every child much earlier on. The trike cost over five times the price of my Miami Miss and my dad had to drive an eight hour round trip to pick it up.

Our story is certainly no exception, but although extra costs are something that come up time and time again when we talk to disabled people and their families, the general public are relatively unaware of just how high these costs can run.

With the Price is Wrong, we wanted to create a fun and engaging way to start the conversation about extra costs with an audience that might not have any prior experience of disability. It is difficult to achieve a balance between discussing a serious issue and doing it in a way that really draws people in and gets them involved, but I hope we’ve nailed it here. I’d love to hear what you think though!

If you’d like to test your knowledge of the extra costs disabled people face, play The Price is Wrong.

And if you’d like to feedback your experiences of the game, feel free to drop me a line in the comments section of this blog.

For more information about extra costs, check out our extra costs campaign.

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.