All posts by warren kirwan

Media and public relations at the disability charity Scope. Blogs about disability and benefits, welfare, social care, public policy, and our campaigns. Changing the world one step or keystroke at a time.

From Nike to Manchester United, brands are listening to disabled people

There have never been so many different ways to influence decision-making at all levels of society. Social media allows disabled consumers to have a direct conversation with brands and companies. They are taking notice.

Manchester United

Martin Emery is a life-long Manchester United fan and a father to three sons. Zac who is five years old, Ethan who is seven and Jordan who is now 18.

Jordan has a number of medical conditions, which means he has learning difficulties, has many seizures a day and uses a wheelchair.

Martin and two boys outside Old TraffordMartin was initially told by Manchester United that he couldn’t seat his family together, and Jordan could only have one carer with him.

Things then got worse before they got better.

A club official emailed Martin to say: “there are some clubs that would welcome you with open arms and possibly ask you to bring as many family members as possible, the downside is it wouldn’t be at Old Trafford, most probably Rochdale, Oldham or Stockport”.

Undeterred, he set up a campaign and website United Discriminates and kicked it off in a blog a year ago.

Read Martin’s blog on the campaign.

The good news is that by the end of last season United had constructed a new accessible seating area for disabled fans, families and friends.

Consumers speaking out

Iconic high-street brand M&S recently launched an online range of bodysuits, sleep suits and vests with poppers in additional larger sizes. That was on the back of a Rita Kutt, the grandmother of a three-year-old Caleb, who has cerebral palsy, contacting the retailer. Read the discussion Rita set up on Scope’s online community.

They had difficulty finding clothes to fit him, as he uses nappies and is fed through a tube in his stomach.

Caleb’s family then set up a Facebook page called M&S and Me: Special Needs Clothing for Children, which now has more than 4,500 members.

When M&S wanted to test their new designs we arranged for parents from our Scope community to trial some sample sizes with their children. Their feedback helped to shape the products.

The new range of clothes cost between £3 and £7, cheaper than similar items of clothing for disabled children currently available in the market.

The influence of social media is growing

Social media allows individual consumers to have a direct conversation with brands. Nike developed an easy grip trainer in response to an open letter from a 16 year-old boy with cerebral palsy.

Lego introduced disabled characters after they were contacted by Toy Like Me, a Facebook campaign run by a disabled mum, who realised that there weren’t enough toys representing disabled people and children.

A growing number of businesses are taking action in response to the Extra Costs Commission, an independent inquiry that last year found daily life costs more on average for disabled people. In response to the report, ride-sharing app Uber launched UberAssist in the UK, a service that allows disabled passengers to call specially trained drivers.

Thinking about what disabled consumers need makes sound commercial sense

There are over 11 million disabled people in the UK and their spending power is over £200 billion a year.

In February, ticketing agent The Ticket Factory following complaints from disabled customers upgraded its booking system to allow disabled people to buy tickets.

Barclays Bank has launched a new portal on its website that supports businesses to make their services and products more accessible to disabled people.

What we need now is even more companies to listen to disabled consumers and recognise the power of the purple pound. Let us know in the comments below if you’ve come across any brands going the extra mile for their disabled customers. 

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.

How disabled people can become savvy consumers

Why is life more expensive if you are disabled? What can be done to bring this premium down? How we can enable disabled people to become smarter purchasers of goods and services?

That’s what  the year-long inquiry into disabled people’s extra costs took a close look at their first roundtable debate.

Here is Andy Simpson from the Family Fund explaining why life costs more for disabled families.

The event kicked off with Dr Roger Wicks director of policy and campaigns at Action on Hearing Loss explains where companies are going wrong and where the main challenges lie. Independent commissioner Martin Coppack explains how many businesses have a ‘mythical consumer’ and very streamlined front-line response teams.

Jonathan Stearn from Citizen’s Advice Bureau picked up on the theme that products targeted at targeted at specific groups fail. All consumers are vulnerable at different times, and disabled people are only vulnerable when they denied goods and services by company systems that are not responsive enough.

Solutions

The debate focused on how we change the behaviour of companies, and make it easier for disabled people to be savvier consumers.

One great  idea was to target accountants for small businesses as a way of introducing new concepts because every small business uses them.  Another was the introduction of a ‘gold standard’ for organisations to aim for.

However, all too often disabled people aren’t consumers in a market because they can’t afford to get into it in the first place.  But there are solutions.

We heard how successful Motability is at creating a market in leased cars, scooters and powered wheelchairs for disabled people. All someone needs to take part is exchange their mobility allowance. This gives Motability a massive stake in the market and the leverage and expertise  to reduce costs, admin and time to the consumer.

Other great examples that were thrown into the mix included SENDirect that brokers information, advice and costs of services to parents of disabled children.

The final speaker was Richard Garner from Purple Compare on how he plans to update the concept of comparison websites to give disabled consumers better information, and crucially a better deal.

Find out more about Scope’s extra costs work.

 

Disability, employment and the law

Guest post from Emma Satyamurti is an employment and discrimination lawyer with the law firm Leigh Day.

If asked to list the key ingredients of a good life, I would bet that most of us would rank work pretty high.

A decent job provides more than a salary; it provides a role, not just in the narrow sense of the job description but a purposeful connection with other people and of contributing to a shared enterprise. At a basic level, getting a fair wage, is a confirmation that you have value in the world. It is not surprising, then, that long-term unemployment can impose a heavy burden, in terms of financial poverty but also through the pain of social isolation and low self-esteem. Not to mention the economic costs of wasted talent and lower tax revenues.

The recent report published by Scope – ‘A million futures: halving the disability employment gap’ – makes important reading. It begins with some striking statistics:

  • The gap between disabled and non-disabled people’s employment is 30%.
  • 10% of unemployed disabled people have been out of work for 5 years or more as compared with 3% of non-disabled people.
  • 220,000 more disabled people left than entered employment last year .
  • More positively, halving the unemployment of disabled people would add £13 billion to the economy.

Of course not all disabled people are in a position to work, but for too many people the obstacles are caused not by their disability but by the hostility of the world of work. The political penchant for stigmatising them as benefit scroungers completely misses the point.

Protection

The law provides disabled people with many protections. It protects from disadvantageous treatment because of their disability. It also places employers under a duty to make ‘reasonable adjustments’ to remove barriers faced by disabled people. This obligation is one of the most powerful tools in the disability rights toolkit. It offers a lever for creative partnership between employer and employee that can be a force for real progress.

But theory and practice are not always in step. While many employers take a constructive approach to disability issues and want to do the right thing, many do not. As an employment lawyer specialising in discrimination (and as a disabled person myself), I see first-hand how often quite simple, inexpensive adjustments would make all the difference.

Yet these are not always forthcoming. I am thinking, for example:

  • The visually impaired client who needed better lighting.
  • Clients whose mental health difficulties mean that a small degree of flexibility in working hours.
  • Clients recovering from medical treatment who, while not yet at full capacity, are keen to return to some form of work and need a non-permanent but intelligent approach to ‘sickness’ absence to do so.

Indeed this last point emerges as a key focus of Scope’s report. Their research suggests that employers’ inflexible approach to sickness forces many into long-term sickness absence and ultimately job-loss. Adjustments to (for example) working hours and location could have supported them to remain in productive work. This is a lose-lose situation for both employers and employees, and for the economy.

One of the recommendations in Scope’s report is for the introduction of a new type of ‘adjustment’ leave to counter the current all or nothing approach. This caters in particular for periods of crisis or change. This would enable employees to take a limited period of part-time sick leave to deal with the situation, while still being able to work on other days. The current system of GP fit notes, and the duty to make reasonable adjustments would support such an initiative, and it will be interesting to see if the government takes it up.

I am optimistic

Unemployment is a damaging form of social exclusion which impoverishes those out of work and society as a whole. Disabled people are particularly vulnerable given the prejudice and fear that still surrounds disability. But I am optimistic. In my own work I have dealt with many cases where employers have (albeit with a little help!) found ways to accommodate my clients’ needs. They can turn what could have been a downhill spiral into a temporary glitch in a successful career.

Scope’s report provides a reminder of the difficulties faced by disabled people. It also shows how much we have to gain from progress and proposes some thought-provoking steps we might use to get there.

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.

 

The Access to Elected Office Fund – changing the world one political appointment at time

Today Minister for Women and Equalities Helen Grant announced that the fund will continue for another year, and be extended.

Helen nailed the central issue and reason it was created in the first place when she said: “Disabled candidates can often be faced with additional costs that make standing for election more difficult than their non-disabled counterparts.”

The fund also “creates the space for disabled people to play a key role in these decision-making processes, but can also lead to increased visibility in public life, and ultimately change attitudes towards disability” according to Scope chair Alice Maynard.

In the run up to the 2010 election the Conservative party manifesto committed to “introduce a £1 million fund to help disabled people who want to become MPs, councillors or other elected officials with the extra costs they face in running for office”.

The fund idea was then reflected in the coalition agreement after the election.

Since the fund was launched in July 2012 there have been over sixty applications to the fund, which will now also cover Parish and Town Council elections.

The Local Government Association Be a councilor campaign is also being expanded and will now help aspiring disabled candidates by providing coaching, mentoring and training, to help build their confidence, knowledge and skills.

Everyone involved deserves a huge amount of credit, for recognising the potential disabled people have, and the benefits they can bring to our communities and political life. Crucially that is being backed up with money, time and commitment, particularly at a time the public purse is under pressure.

Disabled people are still massively under-represented in public life, but here’s hoping that more people take the plunge and use to its full potential.

In you’re interested you can apply on the Access to Elected Office Fund website.

What the Conservatives and Labour say about welfare reform and disability

Today the Work and Pensions Secretary Ian Duncan Smith gave a speech to mark the 10th anniversary of the formation of the Centre for Social Justice think-tank about welfare reform.

Here is what he had to say about disability:

“Of course in the most severe cases of sickness and disability, it is right that welfare should support individuals, but even then, it must be about more than sustainment alone. It should be about helping people to take greater control over their lives.

For all those who are able, work should be seen as the route to doing so – for work is about more than just money. It is about what shapes us, lifts our families, delivers security, and helps rebuild our communities. Work has to be at the heart of our welfare reform plan, or all we will do is increase dependency not lessen it.”

Read the speech in full on the Spectator website, or with other comments on the Guardian’s politics live blog.

On Tuesday Rachel Reeves, the shadow work and pensions secretary laid out her party’s stance on social security at the Institute for Public Policy Research (IPPR) think-tank, and here is what she said about disability:

“Now it’s important to say at the outset that there will always be people who cannot do paid work, because of illness or disability.

“And it is part of our responsibility to them to make their rights a reality: rights to dignity and respect, to a decent standard of living, and to the resources and support that can empower them to contribute and participate equally and fully in society.”

Read the speech in full on the New Statesman website.

Your reactions to the suicide storyline in Coronation Street

Coronation Street sign
(photo by Andrea_44)

Tonight the ITV Soap Coronation Street will see Hayley Cropper, a character who has pancreatic cancer, end her life.

As the Metro says “stand by your tissues”. If the build-up is anything to go by there is sure to be a strong reaction. Here is a bit of a spoiler on Digital Spy.

Over the weekend the debate continued.

Former Paralympian Baroness Grey-Thompson says this storyline may encourage disabled or ill people to take their own lives. While Daily Mail commentator Peter Hitchens’ take on the Corrie’s storyline and the ensuing debate is “the worst thing is that this sort of propaganda by melodrama bypasses wisdom and reason”.

We asked people on Facebook and Twitter what they thought

Kevin said:

“The storyline is about suicide, not assisted suicide. Everyone already has the ‘right’ to kill themselves like Hayley. I agree with Ian Penfold – let’s help the living to live, not the dying to die. 2. It is at least a strange coincidence that the story appears just as Lord Falconer’s Assisted Dying Bill is being launched. 3. Telling some people that suicide is fine as their lives are valueless because they fulfill certain physical criteria WILL impact upon disabled people….”

But those views aren’t shared by Donna who said:

“As a severely disabled person, since birth I think it should be an individual’s choice whether to end their life with dignity. As long as that person is of sound mind. I live with constant pain as my body won’t tolerate painkillers. It is hard to explain to someone how bad the pain is. Most people think they understand pain, but take my word for it, there are many different types of severe pain, and unless you have experienced bone pain for example you can’t possibly know how demoralising it is to live with day in and day out.”

Alison’s post was particularly poignant:

“I am in the last few weeks/months of my life according to the consultants, I am only 47, I will not allow myself to become a shell of the person I am, I will not and do not want to let my children watch me struggle much more with the pain I am living with. I want the right to a dignified end, an end where my mind is sound and I have been able to have conversations with the people I love.”

Christine thinks the storyline has been “very well done” and:

“This is a case of a women who is aware of her choices and made them after careful thought. She knows why she wants to do it. It’s not like she had a bad day and then decided to end it on a 5 minute decision. This argument has been around far longer than the coronation street storyline and soaps tend to mirror real life issues. The fact is the character is going to die at some point. People with disabilities may live a long life, but with excruciating pain and loss of quality of life.”

Susan added:

“Assisted suicide was covered in Emmerdale, in a tragic storyline and the legal ramifications that followed. I can’t recollect any call for a change in the law with that storyline.

Corrie’s storyline is the suicide of a person with terminal cancer. I don’t see how the leap can be made. I’m very unsure about assisted suicide. I understand the point of view of helping somebody who wants to die but can’t do it for themselves but I can also see how it can be abused not just by relatives but by officials etc. And the way this country is at the moment I can see such a law I can see disabled people being persuaded to die when they don’t want to.”

Michelle said on the Scope blog:

“As the mother of three disabled children, two of whom are severe learning disabled this frightens me! I can see some state doctor making the decision to euthanize my children when they are adults as the most economical option, rather than pay the high expense to care for them properly. It’ll be a sad day for society when that happens!”

Tonight, the proof of the pudding will be in the watching. We have to wait and see what happens, but the debate will continue, and as this headline in the Western Daily Press says: “From Tony Nicklinson to Hayley Cropper, the right to die debate is not going away”.

Coronation Street’s controversial suicide storyline

(photo by Paul Walker)
(photo by Paul Walker)

Everyone is talking about Corrie.

Next week Hayley Cropper – a long standing character in the soap who has pancreatic cancer and is terminally ill – will take her own life. 

Every family experiences death, and nobody wants to see or think about their loved ones in pain.

It’s no surprise a touch paper has been lit.  The issue of how Hayley dies has become a major talking point – from the Sun to the Today Programme.

There have been strong reactions. Warnings have been sounded about copycat suicides.

Hayley’s husband is against the suicide. We wait to see what he will do.

The storyline has restarted the national debate on assisted suicide

The Sun backs a change in the law. It’s resident GP gives a heartfelt account of what it’s like to have a relative experience decline and increasing pain…and her wish to be able to end her mother’s suffering.

Meanwhile in the courts the family of Tony Nicklinson – who had locked-in syndrome – and Paul Lamb who was paralysed after a road accident are campaigning to have the right to ask a doctor to help Paul die.

The other side of the debate

However, disabled campaigners and charities, such as Care Not Killing and Not Dead Yet  oppose any weakening of the law. They are worried that it will ferment negative attitudes to disability and lead to disabled people being put under pressure to kill themselves.

As Dr Peter Saunders from Care Not Killing said on the Today Programme “The most concerning thing of all about this is the myth that suicidal thoughts in people who are disabled or sick should be managed differently from similar thoughts in those who are not sick or disabled… It panders to public prejudice in a way that is very, very dangerous.”

Scope’s chief executive Richard, explained the concerns in a blog.

This all comes ahead of an Assisted Dying Bill which could be heard in the Lords as early as May.

Scope has long argued that this is a really important debate, and even more important is that the views of disabled people are heard.

Let us know what you think about this storyline and the ‘right-to-die’ debate that it has sparked. 

Five reasons why social care is STILL the biggest issue facing disabled people

1. The social care system is on its knees. Social care is the support disabled people get from their council to get up, get washed and dressed, and live independently. Cash-strapped councils have been upping the bar for support eligibility, with 83% of councils now setting the threshold at a higher level. According to London School of Economics 69,000 disabled people have been pushed out of the system. And councils are squeezing the support for those that are in the system. A Scope survey found almost 40% of disabled people who continue to receive social care support are not having their basic needs met including eating properly, washing, dressing or being able to get out of the house. ADASS says councils are facing a further 10% cut in their budgets. Have a listen to Angela Murray explain why social care is so important to her. Take away the preventative support and people fall into crisis. A series of experts and politicians made the link between the escalating A&E crisis and social care over the last six months.

2. Britain Cares about social care. Over the last six months the public has been showing it cares about social care. The Stephen Fry-backed Britain Cares campaign has seen over 25,000 people contact their MP about social care for disabled people – a thousand of whom have sent personalised photos to show they care. At the same time Angela launched a petition on Change.org, which has received more than 45,000 signatures. A similar petition on 38 degrees garnered just as much support. Those will passion for craft have worked the words ‘I Care’ on to everyday items and sent them to their MPs to show their support.

3. £3.8billion. The June Spending Review saw the Chancellor make significant cuts across Government departments – to reach a target of saving £11.5bn, including removing automatic pay rises for time served for staff in schools, NHS, prisons and the police. Against that backdrop he announced a £3.8 billion investment – including £2 billion of new money – in social care with the aim “of delivering better, more joined-up services to older and disabled people, to keep them out of hospital and to avoid long hospital stays”.  The Government announced this money would be spent through Health and Wellbeing Boards. This is significant as it was the mechanism a Scope-facilitated joint inquiry by the All Party Parliamentary Local Government Group and All Party Parliamentary Disability Group recommended in its report Preventing Crisis: Making social care reform work for disabled adults. This should enable the money to be spent on front line services, reacting to local demand.

4. We’ve now got the small print. Some of the cash can go into the main social services kitty (or black hole judging by ADASS’ latest budget survey). But there are conditions attached, that demand councils to spend most of the money on joined-up health and social care.  Councils and health services have to agree plans for how it will be spent, which then need to be signed off by Health and Wellbeing Boards. The Government also wants to see joint approaches to assessment and care planning and, where care is joined-up, one accountable professional. Cash should also be targeted at supporting patients being discharged from hospital who need care. Most intriguingly councils only get the extra cash if they retain their eligibility threshold at the current level. This is very much a case of the Government addressing what it sees are the most urgent issues, while it goes about making the case for the Care Bill.

5. The crucial question is who gets care and who doesn’t. The Government will answer this as part of the Care Bill, which has had its first set of debates in the Lords. Under the current plans – reiterated by the Minister in a discussion guide, which also gave a clue as to how eligibility would be worked out. The good news is that some of the detail of how the Government will decide eligibility looks good. The bad news is that the Government intends to set the bar for eligibility to social care at a level which London School of Economics (LSE) says will leave 105,000 disabled people with significant needs outside of the system altogether. The bill also seeks to tackle the crisis in care by introducing a cap on costs, a new means-testing threshold and national eligibility to end the postcode lottery in care. It is due to be debated in the Lords in October and then it’s over to MPs at the end of the year. Scope – like a number of organisations – is arguing that by squeezing people out of the system the government undermines other more positive moves, such as a cap. We’re also expecting a consultation in November which will be a chance for disabled people, carers, families and public to have their say.