My job was to advise employers on disability issues…then I became disabled myself

Guest blog from Jane. Jane was working as a trainer advising business on the benefits of a diverse workforce, including the need to employ more disabled people. Then in an unexpected twist of fate she became disabled herself, and had to look at her own employment situation.

Inclusive recruitment and employment has been an important issue to me all my working life. As an independent diversity trainer I travelled around the UK for 14 years, talking to employers about the benefits of a diverse workforce including, of course, disabled people. I would talk about the business benefits of employing disabled people, backed up by research which demonstrates that disabled people are, on average, easily as productive as their non-disabled colleagues, and have less time off sick, fewer workplace accidents and stay in their jobs longer.

They also bring additional skills they have had to develop to navigate around a world not designed for them – tenacity, creativity, problem-solving, determination and innovation. And, of course, they bring with them intelligence about how to access the “disabled market” (10 million disabled people in the UK spend up to £80 billion a year – that’s a big market!).

Twist of fate

Then, in an unexpected and somewhat ironic twist of fate, I became disabled myself. I knew that most disabled people acquired their disability as adults rather than being born with them, and I was now part of this statistic. Instead of talking about disabled people as “they”, it was now “we”.

After some soul searching, and having various treatments and surgery to try and “get better” I had to finally accept that my spinal condition was degenerative, and was not only incurable, but would get worse. Unable to sit, stand or walk very well, I could no longer drive around the country standing up all day to deliver training. I had to put my money where my mouth had been for the previous 14 years, and look at my own employment situation.

I adapted my workplace

I started a diversity training business (using my knowledge and experience) and employing others to deliver the training. The logistics were challenging, and Access to Work funding turned out to be a major source of support. Unable to sit at a desk I would lie on a platform to work with a laptop suspended above me, and they also provided a height adjustable desk where I could stand to work for short periods.

Jan standing at a desk

Jane lying using a laptop

A new start

This arrangement worked well for seven years, and then the economic climate and my health both rapidly deteriorated. The training business ceased trading, and I founded Evenbreak. This was a whole new venture – a social enterprise to help disabled job seekers find work with inclusive employers who would value their skills, through a specialist online job board.

Access to Work funding saved the day again. I now work lying on my bed with a laptop suspended above me. When I go to work-related appointments I am driven lying flat by a driver paid for by Access to Work. When at the destination I can stand for short periods of time with a back brace and neck collar, and if I need to be there a long time I have a reclining chair I can lie on.

Evenbreak grew, attracting employers such as Network Rail, John Lewis, E.ON, Greggs, BBC and many more, and soon I needed to employ people to help. In order to promote good practice, we only employ disabled people, and currently there are four of us, all disabled and all working remotely from home.

Opening minds

However, I was lucky. I was self-employed or running my own business. For disabled people who are unemployed, or working for employers, they have to rely on the employer being enlightened enough to see their talents beyond their disability, and be prepared to be flexible if necessary in order to access that talent.

Many of our candidates report that they have previously been discounted for jobs because of a completely unrelated disability (e.g. someone who uses a wheelchair considered unsuitable for a telesales role – why??). Or if they have acquired a disability whilst in employment the employer has not been flexible enough to accommodate new needs and the person has left.

My advice to candidates is to leave the discussion about disability and reasonable adjustments as late in the process as they can. Of course, this is difficult if reasonable adjustments are required to access the first stages of the recruitment process.

Emphasising the skills the candidate brings with them is important – making the employer see the benefits of the candidate’s skills before having to think about reasonable adjustments. Also, it’s good for the candidate to put the employer’s mind at rest regarding cost, explaining that Access to Work will pay all or some of the costs of any reasonable adjustments required.

One of Evenbreak’s aims is to promote the business benefits of employing disabled people so that in future disabled candidates won’t have quite so many barriers to overcome. We work with employers to help them adopt good practice around inclusion and accessibility, in the hope that one day all disabled people will have an even break.

Jane on a special chair, upsidedown on the phone

Scope have published a new report exploring disabled people’s working lives. The report – ‘A million futures’ – shows that last year alone, 220,000 more disabled people fell out of work than found a new job.

Employers should treat disabled people with the same respect as anyone else

Guest post from Tom. After being diagnosed with Motor Neurone Disease, he was shocked to be dismissed from a job he loved as an engineer. With the support of his family and a firm of local solicitors, he won his case for unfair dismissal as a result of disability discrimination.  

Up until early last year I had a job I loved as an engineer at a cleaning company. I used to wake up each morning and think “what’s today got in store?” I’d had a couple of different jobs since leaving the army but this was by far my favourite.

About ten months after I started working there I started to get twinges and a weakness in my arm. At first I put it down to a strain caused by walking our dogs, but when it got worse I went to the doctors.

Motor Neurone Disease has taken the lives of my Dad, my Uncle and my sister, so when I got the diagnosis it didn’t come as a surprise. I spotted the signs and even told the consultant what it was before she broke the news.

Most people know it as the disease that Stephen Hawking has got, it’s a terminal condition that attacks the nerves in the brain and spinal cord.

At this time I was fit enough to walk my dogs five miles before work each morning and I decided that I wanted to stay active and stay in the job I loved as long as I could.

I decided to be open about things and tell my boss that I’d been diagnosed with the condition. I said that I’d know when it got to the point where I could no longer work, I thought he understood.

My wife Linda and I were coming up to our 40th anniversary and we really needed a break – so we took a fortnight’s holiday to the Caribbean. When we got back I was feeling really well rested and raring to get back to work. But on my first day back I was invited to a meeting with the HR Manager as soon as I arrived in at 8am – I knew something was up. It was the first time ever that I’d had to speak with her.

She took me into an office and asked how I was feeling. I said I felt great and was really enjoying my job. Then she left the room and went to speak to the company’s owner in private. When she returned she told me that I no longer had a job. I hadn’t had a day off sick, so it came as a massive shock.

It felt like because of my illness I’d been thrown on the scrap heap – it was a double blow, first the illness and then being sacked. I thought to myself – what have I done wrong? The only thing I’ve done is to have the disease.

I went into a depression, wouldn’t go out of the house, I stopped doing the gardening and I even gave away my season tickets for Newcastle football club away, and I’m a massive fan. If it hadn’t been for my wife Linda, well, I don’t know what I would have done.

Then my brother said that he wasn’t sure if what they’d done was legal.  I got in touch with my local solicitors Muckle LLP and they took up my case.

It went to an employment tribunal and they said I’d been unfairly dismissed – subjected to disability discrimination. After the hearing I was awarded damages. But I wish I’d just been able to keep my job.

I think my health has deteriorated as a result of losing my job. I liked going to work, I liked being active, and without my job to get up for each day, I haven’t been as active as I was and it shows. My legs have become very weak and I have to use a wheelchair. I can’t walk the dogs any more.

The case was really stressful too and there were definitely times when I felt like giving up, but my wife, Linda, and my family kept me going. And it was worth it, I wanted to stand up for my rights. I want all employers to know that people who are disabled should be treated with the same dignity and respect as anyone else.

Today Scope published a new report exploring disabled people’s working lives. The report – ‘A million futures’ – shows that last year alone, 220,000 more disabled people fell out of work than found a new job.

A million futures: halving the disability employment gap

Today we published a new report exploring disabled people’s working lives. The report – ‘A million futures’ – shows that last year alone, 220,000 more disabled people fell out of work than found a new job.

We wanted to explore why disabled people are struggling to stay in jobs.

Our new research with hundreds of disabled people found that a lack of flexibility in the workplace is a critical issue.

“I, like thousands of others, fall into the grey area of too disabled to hold down a job without health implications, yet not disabled enough to get help from the Government.” – Sarah, Isle of Wight

Nearly half (48%) of the 700 respondents to a Scope survey said that flexible working time and practices could have helped them stay in work.

Many disabled people told us that a key benefit of flexible working is that it can allow them to manage changes in their lives related to disability, or to manage a fluctuating condition, or recover from treatment.

Yet our survey found that only one in three had been offered the flexibility they needed.

“If I’d been given the opportunity, I could have sat down with them and said ‘look, this is what I’m capable of doing, this is what would help me get back into the workplace” – Jane, West Midlands

As a result, too many disabled people and their families find themselves relying on taking sick leave to manage this need for flexibility – often against their wishes.

Over half (60%) of those on long-term sick leave are disabled people. Once in sick leave, it can be very difficult to return to work.

Providing better support for disabled people must be a priority for Government and employers – and can bring benefits for everyone.

For those disabled people who are able to continue working, it means they can continue working, contributing, and taking home a pay packet.

Employers are able to keep hold of the knowledge, experience and contacts that often experienced disabled people can bring.

Crucially, better in-work support can bring benefits to the Government, by rebalancing spending on expensive programmes back to supporting those in work.

For more details, see the full report.

Find out more about our previous reports:

Undiagnosed Children’s Day 2014

SWAN UK (syndromes without a name) estimate that 6,000 children with undiagnosed genetic conditions are born every year. Today’s Undiagnosed Children’s Day has a mystery theme to highlight the fact that many undiagnosed children are medical mysteries. They’ve also created this fun video for the day:

Last month, Lauren Roberts from SWAN UK wrote a blog for us about the practical reasons why a diagnosis can be so important – Why do you want to label your child? We had a big response online to the blog, with many people agreeing with Lauren that without a diagnosis getting the right support is incredibly hard:

“If you don’t get a diagnosis your children don’t get the help they desperately need or deserve from the medical profession.” – Pam

“My daughter is a SWAN and hardly gets any help what so ever, anything that could actually help her that costs money she’s not considered for using her non diagnosis as a ‘one day she might’.” – Kathleen

“From experience I know this is extremely difficult and no offers were made before diagnosis, only after.” – Andrea

Read more of the responses on Facebook.

SWAN UK bring families together through an online community and family fun days.

Cheap and cheerful holiday activities

Your Easter budget might not stretch to Disneyland, but our friends at Netbuddy (now part of Scope) have come up with some great ideas for entertaining kids on a shoe string. Please add your own suggestions to this list and share nicely!

Treasure hunt

I enjoy going on a treasure hunt with my kids. The other day we collected sticks to make a pretend camp fire. Other times the ‘treasure’ has been stones or daisies. It’s a good, inclusive activity they all enjoy.

Glitter party

Poppy has very little fine motor skills and struggles with most art and craft activities. So I stuck some wrapping paper to the wall and we made hand-prints on it. Then we covered in glue and threw glitter at. Messy but great fun!

KnittingKnitacise

Knitting is great to exercise hand writing motor skills.

 

Rubbish instruments

Raid the recycling and make some musical instruments. Fill jars and plastic containers with rice to make shakers, elastic bands over a box can make a great guitar and balloons stretched over tubs for some bangin’ drums!

Make a den

My daughter loves it if we put a sheet over the dining table and make a den. I bring some of her sensory lights in and we all sit underneath. Her non-disabled brothers think it’s great too!

A real catch

A velcro ball and catch mitt set has been fantastic for my son who is unable to catch a regular ball. Great for fun, cause and effect and coordination. Ours was under £5 from eBay – check out ‘Spordas No Miss’.

Deflated balloonsFun with balloons

Fill two balloons (one inside the other) with sand or flour for a fun, sensory activity.

Retail therapy

A great free activity for a rainy day … the Argos catalogue! Harris and I poured over the pictures. Lots of opportunity for conversation, it was a bit like retail therapy except, since Harris doesn’t understand the concept of shopping, so no money was spent.

Electronic sounds

Electronic instruments are great for people who like making a lot of sound (banging furniture etc). They can make as much noise as they like with the head phones on and no one else has to hear it! You can get drum kits /keyboards etc.

Cheerio necklace

Try threading cheerios on a liquorice lace to make an edible necklace.

Strawberries, blackberries and bluecurrantsBerry tasty paint

Squash strawberries, blackberries, rasberries, blueberries etc to make a tasty paint.  Mix together the colours and tastes.  Great messy fun!

Word games

We’ve been using words on the back of paper-clipped paper fish with a magnetic fishing rod to make a game out of reading.

Matching pairs game

Use a digital camera to make your own cards for this game. you can photograph your own matching pairs ie your dog, your home, family, etc You’ll need two of each.

Make some thunder

“Thunder makers” are brilliant. I got mine at Hawkins Bazaar for around £8, you just give it a shake and it sounds like a low rumble of thunder, the harder you shake the louder it gets. (Be warned though they are addictive!)

Feeling art

For visually impaired people, try adding things likes sand or beads to enable them to feel their artwork. Be consistent and stick to the same textures for colours: sand for yellow, smalls beads are green etc.

pastry brushFind the alternative

Sal finds it difficult to hold small objects, so I gave her pastry brushes instead of small paint brushes for painting.

Rice is nice

Fill a bin with rice and let your child plunge their hands deep into it. Hide some toys and measuring cups for added fun. Dried beans also work well.

Make your own

I made my own 3-D letters, numbers and words in colours that Margy likes best to teach her to read. You can laminate or cover in plastic so they last longer.

Activity frame for wheelchairs

The frame from a small child’s swing makes a great frame to hang stuff from to go over a wheelchair as it is stable and can be folded for easy storage.

BlackboardDrawing wall

Stick some blank paper on a wall somewhere and turn it into a ‘graffiti wall’. You can also paint a wall with blackboard paint or put up a big white board for graffiti fun.

Home skittles

Use guttering to make a chute to play skittles.

Foil play mat

We use a foil emergency blanket as play matt for Matty –   it is great for sensory stimulation as it is shiny and makes nice sounds.

Black and white photo of family watching TV in 1950sCinema Club

Turn your house into a cinema. Choose a DVD together (bought or borrowed from the local library), make tickets, posters etc. Invite friends if you’ve got the space and then make popcorn, close the curtains and enjoy!

Paint with smells

I like to do ‘smelly painting collages’ with my daughter.  Using mint sauce, coffee, chocolate, sherbert etc.  We’ve also tried making a pulp from grass by adding a bit of water to it.  My daughter is visually impaired so it really helps bring the world to her.

Weighted toy

Weighted blankets and objects can exert a calming influence on some people. Try taking an old favourite stuffed toy and filling its paws and tummy with curtain weights, nuts and bolts or other heavy items. Great for sitting on people’s laps when they’re feeling jumpy.

Sensory album

We made our own sensory scrapbook. We stuck sensory bits and pieces alongside our own photos in an album to make it personal.

Make your own film

Use your camcorder to make a ‘film’ of a favourite book. We did The Tiger Who Came to Tea, using a toy stuffed tiger, shots of our table set up for tea, empty food packets, and a homemade cardboard claw peeking round the front door. You can do lots of voiceovers to explain what is happening, or do it documentary-style and interview the Mummy, the child, the cafe owner, Daddy, the Tiger etc.

Dance competitionChild dancing wearing hat

Put on the music and have a dance competition.

Toy libraries

Toy libraries are great for borrowing special needs toys and equipment. Much cheaper than buying. To find a toy library near you, contact the National Association of Toy and Leisure Library’s Helpline Services: tel: 020 7255 4616 or email: helpline@playmatters.co.uk

 Sensory flour games

I mix cornflour and water together and it makes a great sensory play tool. Also put flour into a plastic bag and seal it with some food colouring. As it gets squished round it will change colour.

Fluorescent images

We have installed a UV light in our dark hallway and use fluorescent cards with shapes cut out to stimulate Ruby who is visually impaired. As she gets older we are turning shapes into letters, words, numerals, books.

Enticing smells

Put good smells in paint or playdough to make it more interesting.

We’d love to hear your cheap ‘n cheerful tips for Easter. Please share your own ideas in the comments box below.

Paula’s story: my life with Cerebral Palsy told on stage

When Paula Rees was diagnosed with Cerebral Palsy back in the 1970s, doctors told her parents there was little hope of her ever learning or understanding anything. Convinced the experts were wrong, Paula’s parents fought for her to experience the same opportunities as everyone else.

Paula Rees poet with cerebral palsyAgainst all odds, it emerged that Paula could not only understand what went on around her, but was able to express her own thoughts through poetry.

Now the writer in residence at Chickenshed, an inclusive theatre company in north London, Paula has been working with Chickenshed’s founders Mary Ward and Jo Collins on a musical dramatisation of her life.

Paula’s Story tells of an incredible journey of love, courage and commitment to the belief that every human being has the right to be nurtured. It tells of the magical breakthrough moment when Paula communicated with her mother for the first time, and the discovery of Paula’s talent as a poet, writer and lyricist.

“Watching my story performed by very committed people who believe in it, is the most moving experience and one which I feel privileged to have,” says Paula. “I know that professionals have been judging me from the day I was born – with my family being judged even more. My life and humanity for them ended on their first judgement, but I am still here.

“My family have brought me through everything – hurdle by hurdle, barrier by barrier, sadness by sadness – I owe them this story. It is far more a tribute to them, than me.”

A musical scene from Paula's Story
A scene from Paula’s Story

Paula’s Story is a powerful dramatic production which explores the basic human right for all individuals to be acknowledged for what they can do. Paula says she feels society looks at her in a very different way to the way she views herself.

“Here is society’s view about some of the important things that I can’t do:

  • I can’t move and so I can’t think.
  • I can’t talk and so I can’t communicate.
  • I can’t feed myself or dress myself. (People always say this. They always say it as if it’s important. I have never understood it, the importance of it I mean).

“Now here is my view about the important things I would like people to say about me:

  • I can move enough to write lyrics which are put to music and become what some people say are beautiful.
  • I can express myself in words I spell out so clearly – letter by letter – step by step – so I can communicate, if people are open to it.
  • Talk is not communication. Communication is communication.”

    Paula Rees in performance
    Paula in performance

Paula’s Story opens at the Chickenshed Theatre on 30 April and runs until 17 May. As a special offer to Scope followers, all tickets for 30 April, 2 and 3 May will be just £5. After that the concession rate of £8 will be charged. To book tickets go to the Chickenshed website or telephone 020 8292 9222. (18001 020 8292 9222 Typetalk) Please quote ‘Scope ticket offer’.

 

Being in control of your own money

For most of us, it goes without saying that we control our own money. We choose when to spend and save, where to keep it and how to manage it.  For many people with a learning disability however this isn’t the case.

Meike Beckford is a Financial Advocate with Dosh, a not for profit company that specialises in supporting people with a learning disability to manage their money. Here she explains more about their recent investigation into banks and banking.

The importance of support

We all need help and support to manage our money, whether it’s a suitable bank account and regular bank statements, or guidance and information about pensions on retirement.

This support is even more important for people with a learning disability and many other financially excluded people. The right information and support enables many more people to manage their own money well, avoiding financial hardship and using their money to have a more fulfilling life.

This support could involve:

  • accessible, easy-to-understand information on money topics
  • financial education
  • maths and numeracy lessons
  • budgeting tools
  • benefits support
  • suitable and adaptable banking products and services
  • financial advice
  • debt management and support

The important thing is that the support is personalised. Not too much so that the person loses their independence and control, but enough so that they can manage their money well and use it in the way they want.

Dosh believes that everyone should have as much control and independence over their money as possible. We work hard to achieve this in our daily support for people, as well as through extra projects to tackle specific problems.

Problems with banking

We recently became aware of problems people have when accessing banking. Our financial advocates reported problems opening accounts, assessing mental capacity and giving proof of identity.. We decided to investigate the problem further and talked to many partner organisations, like Scope, as well as members of the banking sector to see what we could do to make things better.

Our report showed how damaging poor support can be – a lack of accessible information for example can leave someone unable to understand banking or open an account. This leaves them excluded from managing their finances and ultimately, less in control of their money. Without a bank account, people will struggle to receive benefit payments, make savings on bills through direct debits or put money away for the future.

We wanted to improve the situation and empower people to get the support they need, so we recently released the making money easier guide. This guide follows the report and helps people understand how banks should be supporting them, including what the law says they should be doing.

Supporting people to manage their money better

One of our financial advocates started supporting a gentleman in 2012 who was not receiving all of the benefits he was eligible for and as a result he was struggling to pay his bills or live a fulfilling life.

With personalised support, the gentleman now receives all of the benefits and premiums he is eligible for and also has support to make cost savings such as switching to direct debits to pay his bills.

Thanks to this support, he now lives a much better life. He has taken control of his money, paying all his bills and still having some money left for the things he enjoys – he is even planning a holiday to America in the future, as long as he saves enough money first!

Lack of the right, personalised support with money leaves many people financially disadvantaged and excluded. It increases the risk of financial abuse, mismanagement and debt and stops people making choices about their lives. It is essential that disabled people get the right support and advice to be in control of their money. After all, without money, what could we actually do.

More information about Dosh

The second in our series of reports in to disabled people’s living standards is – 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.

 

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.

Why we need more male support workers

Guest blog from Luke Masterson, a support worker at Scope in Leeds.

Luke Masterson, Support Worker at Scope in Leeds
Luke Masterson, Support Worker at Scope in Leeds

As a male support worker in my early twenties, I was interested in a recent article in the Guardian about the shortfall in male social and support workers. The article says “only 4.2 per cent of working men currently have roles in health and social care (compared to nearly one in six women)”. Also, only “23 per cent of 16-25 year-olds said they would be more inclined to think about a career in care, if there were a more positive public perception of the role”.

So what is the public’s perception of male carers? Regardless of whether the carer is male or female, are they not doing a fundamentally important job in providing the community with a better standard of living? The gender of a social or support worker is irrelevant.

The main goal of my job at Scope is to provide service users with a better quality of living and increased independence. I have to be honest about how I ended up here. I initially went to a volunteering fair when I was at university to look for something that could enhance my CV and learn more about how a charity works. A year later I work at Scope full time, 41 hours a week, with four different service users and I am in love with the job. Being able to contribute to the community, build relationships with service users and help provide a better quality of living is an un-realised dream come true; not something that I even considered during my journalism degree.

All of the service users I work with are men. One of the main reasons for this is that many male service users need a male companion or role model in their life. This then highlights the issue of the lack of male care support workers, why is this the case? Working in this sector you find yourself predominately giving emotional support, is this something women are more equipped at? In my job I’ve had to learn how to give emotional support, as it’s something I’d not had much practice at before working for Scope.

I do believe the main reason for the current decline in the amount of care workers, regardless of their gender, is the decreasing amount of funding in the care sector. Until this is resolved, the decline in young male support workers seems likely to continue. I think the idea of care and social work also needs to be introduced to males at an earlier age. The work is extremely rewarding and fulfilling and I definitely recommend it to other men my age. Breaking down the stereotypical views of the profession could help to increase the number of males in this sector, which would undoubtedly improve services for the people who need them.

Scope in Leeds offers support to disabled people and their families at home and in the local community. Search our current job vacancies.