Tag Archives: Extra Costs

PIP is a lifeline for disabled people and needs to be protected

We know that life costs more if you’re disabled. Personal Independence Payments (PIP) play a key role in helping disabled people to manage some of these extra costs.

Last week the Government announced plans to tighten up access to PIP. We are concerned that this reduction in financial support will make it harder for many disabled people to live independent and fulfilling lives.

The extra costs of disability

Scope research shows disabled people spend on average £550 a month on costs related to their impairment or condition. For one in 10, these costs amount to £1,000 a month.

The additional costs disabled people face broadly fall into three categories:

  • Expensive purchases of specialised equipment, such as wheelchairs or screen readers.
  • Greater use of non-specialised goods and services, such as energy or taxis and private hire vehicles.
  • Paying more for non-specialised goods and services, such as insurance or higher tariffs for accessible hotel rooms.

These costs have a detrimental impact on disabled people’s financial stability. For instance, disabled people have an average of £108,000 fewer savings and assets than non-disabled people, whilst households with a disabled person are more likely to have unsecured debt compared to households without a disabled member.

The financial barrier of extra costs makes it harder for individuals to get a job, access education and training opportunities, pay into savings and pensions, and participate fully in their community.

The role of PIP

The role of PIP – and its predecessor Disability Living Allowance (DLA) – is to support disabled people to meet the additional costs of disability.

Unlike other aspects of the welfare system, PIP is not an income replacer like Employment and Support Allowance or Jobseeker’s Allowance, nor is it designed to boost people’s income when wages are low like tax credits. It serves to level the playing field between disabled people and non-disabled people by helping to tackle the financial penalty of disability.

This puts disabled people in a stronger position to contribute to, and benefit from economic growth as employees, savers and consumers. In research we carried out with over 500 recipients of either PIP or DLA, over half said that PIP was important in helping them to work. A further 58 per cent said that even a small reduction in their PIP award would have a significant impact on their ability to live independently.

Our concerns with proposed changes to PIP

Scope has welcomed previous commitments by Government to protect the value of PIP and keep it free from any taxation or means-testing.

However, last week proposed changes to PIP regulations were announced that would make it harder for many disabled people to score points for certain descriptors in the assessment.

This follows two recent legal judgements which ruled in favour of awarding higher points during a PIP assessment for people who need help taking medication, or who can’t travel alone due to “psychological distress”.

Since the announcement, Scope has received a number of queries through its helpline, online community, social media and customer contact teams from current disabled claimants who are worried about whether these new changes would affect them.

A new PIP assessment

We are concerned that the changes Government are proposing make a crude distinction between those with physical impairments and mental health problems, which will lead to many disabled people missing out on vital financial support with disability-related costs.

However, we know that someone’s impairment or condition is not an accurate indicator of the additional costs they face. Disabled people have unique experiences of additional costs, which often arise as a result of barriers to participating fully in society. For instance, somebody with an anxiety disorder who finds it difficult using public transport may have to consequently spend more on taxis to get around.

We want to see reform of the PIP assessment so that it accurately captures the range and level of disabled people’s extra costs. Disabled people with lived experience of these costs should be directly involved in designing and setting a new assessment criteria.

What Scope is doing

We are calling on Government to think again about these changes and are briefing government officials about why it is so important that they don’t go ahead.

Our Chief Executive has also spoken to the Secretary of State for Work and Pensions to raise our concerns and ask Government to rethink its decision to reduce access to PIP.

We will continue to raise our concerns with PIP in the media to ensure Government hears disabled people’s experiences of extra costs.

We’re keen to hear from you about why PIP is important to you or about your experiences of getting PIP. If you’d like to share your story, please comment below or email stories@scope.org.uk.

For further information about PIP, visit Scope’s website or call our helpline for free on 0808 800 3333.

Our priorities – influencing government in 2017

It already seems that Brexit is set to be the biggest political story of 2017 with the Government expected to trigger Article 50, beginning the formal process of the UK leaving the European Union, by the end of March. We think it is really important that disabled people’s voices are heard as part of this process and vital that progress towards equality made in recent years is not lost.

There will also be plenty of other important moments throughout the year and we will be working hard, with you, to make sure issues which affect disabled people’s lives stay high on the political agenda.

Social Care

Social care was hitting the headlines at the end of 2016, with warnings from the Local Government Association and Care Quality Commission that the system is in crisis. With the Government accepting a long-term solution to care funding needs to be found, social care is likely to remain high on the political agenda in 2017. Some additional funding will enter the system this year through an increase in council tax and from the Better Care Fund, but with a funding gap of £4.6 billion, this won’t provide the long term solution needed to meet rising demand and costs.

Social care is the support disabled people rely on to get up, get dressed, get out, and lead independent lives. Without that support disabled people can become isolated, can’t contribute to society and risk slipping into crisis. That’s why we are campaigning for long-term and adequate funding for care. Over 400,000 working age disabled people rely on social care, and with much of the recent focus on how care affects older people, we will be continuing to raise awareness with decision makers of disabled people as users of social care. 55 per cent of disabled care users tell us the system never supports their independence, so we are campaigning for a care system which supports disabled people to live independently and have choice and control over their care.

Employment

In February the Government’s consultation on disability, health and work will close. We want to see the Government take the opportunity to bring about real reform of the support disabled people receive both in and out of work.

The Government announced in October last year that people with severe conditions will receive continued Employment Support Allowance without needing repeated Work Capability Assessments. This is a welcome change but we want to see the Government go further in 2017 and completely overhaul the Work Capability Assessment so that it identifies the full range of barriers disabled people face to work.

We believe disabled people must be protected from any additional conditions linked to the support they receive. We would campaign against any attempts to impose requirements on disabled people receiving support.

The Government want to hear from disabled people about their experiences of employment support services and at work. Read more about how you can submit evidence to the consultation. Later in the year we are expecting the Government to publish a more detailed plan about how they intend to reform support for disabled people following the consultation, and at Scope we will be pushing for swift action.

Employers also have a key role to play in halving the disability employment gap. 85 per cent of disabled people think employer attitudes haven’t improved over the last four years and more needs to be done to encourage employers to create flexible modern practices. The Government should set out a long-term vision for Disability Confident this year and develop a campaign promoting the business benefits of disability employment.

Despite significant pressure on the Government from MPs from all political parties, the reduction in financial support for new claimants in the Work Related Activity Group of Employment Support Allowance is going ahead in April 2017. We will continue to raise concerns about the harmful impact this will have on disabled people and call on the Government to reserve this decision.

Extra costs

Following the publication of the Extra Costs Commission Progress Review in late 2016, we’ll be continuing to campaign to drive down the extra costs disabled people face and working with businesses in a range of sectors to look at ways they can provide a better service for their disabled customers.

In 2017 we expect government to announce a consultation on consumer and market policy. We’ll be continuing to campaign for markets to work better for disabled people, and for a cross-governmental approach to tackle the range of costs faced by disabled people.

We are also expecting the Government to publish their second independent review into Personal Independence Payments (PIP) which will include recommendations for reform, particularly around the assessment process. We want to see the assessment for PIP more accurately capture the range of extra costs disabled people face from higher energy bills to the need for specialised equipment. Given that disabled people spend an average of £550 a month on disability related costs it is vital that the value of PIP is protected.

In 2017 we want to see long-term funding for social care so that all disabled people who need support can get it, reforms announced that will support more disabled people in employment and to halve the disability employment gap and the protection of financial support for disabled people. We will be working closely with disabled people to continue to raise these issues with the Government.

2016 in parliament – Our impact

2016 has been a busy year in politics. We’ve seen the Government make a significant U-turn to stop proposed changes to Personal Independence Payments (PIP), an important consultation announced on the future of health, work and disability, Brexit and increasing pressure on the Government to provide the social care system with the funds it urgently needs. Scope has focused on protecting the rights of disabled people throughout 2016.

Theresa May used her first speech as Prime Minister to outline her vision for the country. She said she wanted to create a country that worked for everyone and create more opportunity for people, regardless of background. Whilst we welcomed this, much more can be done to help those ‘just about managing’, especially when recent research has uncovered that nearly half of people in poverty are disabled themselves or live in a household with someone who is disabled. We’ve raised these concerns with Government, and we need to keep hearing from you about what needs to change.

While the world was excited by the Paralympics in Rio our research found that whilst 78% of disabled people, through the Paralympic Games, have a positive impact on attitudes towards disability. Only 19% felt that Britain is a better place to be disabled now, than four years ago.

That’s why we have met with officials at Downing Street to emphasise the importance of making their social justice plans focus on improving the lives of disabled people.

Social Care

Social care has dominated the agenda in recent weeks and has been a big talking point all year. At Scope we’ve been calling for sustainable funding for social care to ensure disabled people have access to suitable care. The lack of additional funding in the Autumn Statement was disappointing and the small increase in council tax for social care won’t last and isn’t a long term solution.

In October we shared our research into the experiences of young disabled people and care ‘Leading My Life My Way’ with Government. This research uncovered that 60 per cent of young adults felt let down by their social care provision and a quarter were either only slightly or not at all involved in decisions about their care.

Many young disabled people are not being supported to do the things they want to do in their lives.

“I think it [support package] covers my blindness and my hearing impairments and the practical things I need to do, but it doesn’t give me enough time to go out and socialise.” Ricky, 26, South East

Urgently addressing the funding crisis in social care is the first step to delivering this.

Extra Costs

In March, we saw the disability community unite against proposed changes to PIP announced in the Budget. These changes would have left 640,000 people worse off financially. We warned the Government that these changes would just make disabled people’s lives harder and that our helpline heard from many disabled people concerned about the changes. We urged the Chancellor to think again and consider the impact these moves have on the lives of disabled people.

The Government u-turned and said it would not be going with this plan and committed to no further welfare cuts during this parliament.

In October we published the one-year on report of The Extra Costs Commission looking at action taken by businesses, government, regulators and consumers to drive down the £550 financial penalty of being disabled.

Uber and Marks & Spencer were two examples of companies introducing new products and practices to serve their disabled customers better. We would now like to see more businesses recognise the value of their disabled customers and will be focusing on improving service in the energy and insurance industries in the New Year.

Employment

Following our campaign in 2015, the Government committed to halve the disability employment gap and this year we have continued to call on them to introduce reforms to meet this target.

Alongside other charities this year, we have campaigned changes to Employment and Support Allowance (ESA) due to come into effect in April 2017.

The Government plans to reduce the level of financial support to disabled people in the Employment and Support Allowance Work Related Activity Group (WRAG). Disabled People in the WRAG have been found unfit for work by the independent Work Capability Assessment. This cut in support of around £30 a week to new claimants would impact nearly half a million people in the WRAG.

We believe this cut will push disabled people further away from the jobs market and make their lives harder rather than helping them overcome existing barriers to employment.

MPs and Peers from across different political parties supported our calls and argued the change must be postponed. Although the Government pushed ahead with this cut, we will continue to campaign against it.

In October the Government published a Green Paper on Work, Health and Disability which set out proposals to reform support for disabled people in and out of work.

We think it is right the Government is consulting on this and welcome some of the proposals, including working more closely with employers, challenging attitudes and halving the disability employment gap. We want to see wholesale reform of the fit for work assessment scheme, employment support to be made voluntary and significant shifts in employer attitudes towards hiring disabled people.

However, we’re concerned that the Government is considering extending requirements to look for jobs and attend employment programmes to people in the support group of ESA.

The consultation is open until February and the Government want to feedback on their proposals. Our latest blog on the Green Paper sets out how you can get involved.

This year the new Prime Minister said, ‘we will make Britain a country that works not for a privileged few, but for every one of us.’ In 2017 we will be looking to ensure that this includes the UK’s 12.9 million disabled people.

Next year we will continue to campaign for the Government to introduce reforms that support disabled people to find and stay in work, the protection of disability benefits and asocial care system supports disabled people to live independently.

 Read more of our policy blogs.

Disability – the untold story behind the UK’s shocking levels of poverty

Last week The Joseph Rowntree Foundation published a report that suggested half of people living in poverty are either themselves disabled or are living with a disabled person in their household.

In this guest post Helen Barnard, Head of Analysis at the Joseph Rowntree Foundation looks the extra costs and challenges disabled people face in Britain today. 

In recent years, there have been many high-profile debates and scandals about disability – flawed work capability assessments, cuts to benefits, the stubbornly large employment gap.  At the same time, concern about poverty has also peaked at various times, notably in relation to the record number of people in working poverty and soul searching about the reasons for the Brexit vote in June.

Two reports this year have laid bare the extent to which disabled people and carers carry the burden of the UK’s high poverty rates.  In the summer we funded the New Policy Institute to write a report examining in depth the links between poverty and disability. This week JRF published our annual monitoring report which set these findings in the context of the overall picture of poverty in the UK over the last decade.

The headline finding is shocking – nearly half of people in poverty are disabled themselves or live in a household with someone who is disabled. That is 3.9 million disabled people and 2.7 million people who live with someone who is disabled. However, the real situation is even worse than this suggests

The disadvantage disabled people face

Disabled people face a triple disadvantage: they are less likely to be in work, they are less likely to have higher qualifications and they are more likely to be low paid, even when they do have good qualifications. Successive governments have focused on employment and skills as the routes out of poverty.  That makes sense for many families – getting into work and then improving your pay is the most reliable way to a better standard of living, although most families need to have at least one full time and one part time worker to escape poverty. But it is not yet working for the 3.8 million workers in poverty (up by a million in the last decade), or for many lone parents and households with young children or disabled members.

The second reason for the greater deprivation faced by disabled people and their families is that they face higher costs than non-disabled people. Scope’s Extra Costs work has highlighted life costs more if you’re disabled – £550 a month more. These costs can range from needing specific equipment or appliances, to having higher heating bills because of reduced mobility.  This means that the same income provides a disabled people with a lower standard of living than it would for a non-disabled person.  There are benefits intended to address this, but the analysis in our reports shows that these are not fully covering the extra costs – meaning that disabled people have to cut back on other essentials. .

Solving poverty

Earlier this year the Joseph Rowntree Foundation published our Strategy to Solve Poverty. This set out a detailed plan to solve poverty across the UK by boosting incomes and reducing costs, delivering and effective benefit system, improving skills, strengthening families, and promoting long-term economic group benefiting everyone. Many disabled people and their families face considerable challenges in achieving these goals – changing this should be at the heart of a drive to end poverty.

The Government is prioritising reducing the disability employment gap. Their Green Paper is a welcome start to this, but it also shows how much further it has to go to put together a concrete plan to ‘transform employment prospects’ for disabled people. In recent months, the Government has signaled its openness to change by ending the requirement for repeated testing of people with severe conditions and no hope of getting better.

However, far more fundamental change is needed. The planned cut to Employment Support Allowance for people placed in the ‘Work Related Activity Group’ should be reversed: people claiming this benefit tend to be out of work for far longer than those claiming Jobseekers’ Allowance and this cut risks tipping them into destitution. The Work Capability Assessment also requires reform, which should fully involve disabled people and incorporate a real world assessment of the type of work people would actually be able to do.

When Prime Minister May entered Downing Street she promised to create a country that works for everyone and to “fight against the burning injustices” of poverty, race, class and health and give people back “control” of their lives.  The Prime Minister will find it difficult to fulfil this pledge without a serious plan to enable nearly four million disabled people and their families to escape poverty and build a decent, secure life for themselves.

Visit Scope’s website to find out why life costs more if you’re disabled.

What we would like to see in the Autumn Statement 2016

This Wednesday Phillip Hammond will give his first Autumn Statement as Chancellor, the Government’s first major financial statement since the vote to leave the European Union.

At Scope we’ve been campaigning and raising awareness of the important issues that disabled people face ahead of Wednesday’s Autumn Statement announcement.

Autumn Statement

There has been lots of speculation about what he will include. He has decided not to go ahead with previous Chancellor George Osborne’s formal target to create a budget surplus by 2020 which will give him some flexibility on how much he spends.

Theresa May’s first speech as Prime Minister set out her commitment to creating a country that ‘works for everyone’ and ‘allowing people to go as far as their talents will take them.’ A recent common theme has been a focus on those ‘just about managing.’ But what does this mean for disabled people and what are Scope been calling for?

Last week we saw passionate speeches from all parties about the need to rethink the implementation of forthcoming reductions in financial support to Employment and Support Allowance (ESA), at the beginning of the month the Government launched its consultation to tackle the disability employment gap; and, last month we published research highlighting the crisis in social care for young disabled people.

Taken together, there are many disabled people who are ‘just about managing’.

Our Extra Costs work has highlighted life costs more if you’re disabled. £550 a month more. From the need to purchase appliances and equipment, through to spending more on energy. And yet payments aimed at alleviating these – such as Personal Independence Payments (PIP) – often fall short of enabling disabled people to meet extra costs, leaving many turning to credit cards and payday loans to help with everyday living.

Ahead of the Autumn Statement we think there are three key areas that need addressing.

Social Care

Social care has been at the top of the news agenda in the run up to the Autumn Statement with the Care Quality Commission, Local Government Association, Care and Support Alliance and even the Conservative Chair of the Health Select Committee saying the social care system is in desperate need of investment. Working age disabled adults represent nearly a third of social users.

We have long been calling for sustainable funding in social care. Reductions in funding to local government over the past six years mean the social care system is starting to crumble under extreme financial pressure. We have heard from disabled people who have had to sleep fully-clothed, in their wheelchairs. Scope research in 2015 found that 55 per cent of disabled people think that social care never supports their independence. And just last month we found young disabled adults’ futures are comprised by inadequate care and support.

Social care plays a vital role in allowing many disabled people to live independently, work and be part of their communities. That’s why urgent funding and a long-term funding settlement are needed.

Extra Costs

On average, disabled people spend £550 a month on disability related costs and when we asked disabled people about their top priorities for the Autumn Statement, 70% said protecting disability benefits. We want to see PIP continue to be protected from any form of taxation or means-testing and the value of PIP protected.

The Government is expected to announce significant infrastructure investment and there will be potentially be announcements on digital infrastructure and energy.

We hope energy companies are required to think more about how they can support these consumers with their energy costs more effectively. With 25 per cent of disabled adults having never used the internet compared to 6 per cent of non-disabled adults, any new digital skills funding should include specific funding for disabled people.

Employment

The Government made a welcome commitment in their manifesto to halve the disability employment gap and a plan on how to achieve this in the Improving Lives consultation.

The Autumn Statement provides an opportunity for the Government to take steps to support disabled people to find, and stay in work.

Last week, MPs debated the changes to Employment Support Allowance Work Related Activity Group due to begin in April 2017. MPs from across political parties have been urging the Government to think again about the changes. Half a million disabled people rely on ESA and we know they are already struggling to make ends meet. Over the last year we have been campaigning against this decision as we believe reducing disabled people’s financial support by £30 per week will not help the Government meet their commitment to halve the disability employment gap.

Read more about the Green Paper and how to get involved with the consultation.

How are extra costs being reduced for disabled people?

Today (October 19) sees the launch of a new report by the Extra Costs Commission looking at progress made to reduce additional costs for disabled people.

Scope research demonstrates that on average, disabled people spend £550 a month on costs associated with their disability. These costs include things like expensive items of equipment such as powered wheelchairs or screen readers, paying more for energy bills, or facing higher insurance premiums.

Whilst Disability Living Allowance and Personal Independence Payment play an important role in helping disabled people meet some of these costs, this report makes it clear that more work is needed to tackle the financial penalty of disability.

Extra Costs Commission

Addressing the problem of extra costs was the focus of a year-long inquiry from July 2014 to June 2015, the Extra Costs Commission, which identified ways in which government, businesses, disability organisations and disabled people can drive down these costs.

Earlier this year, the Commission reconvened to review the progress made in delivering the recommendations it outlined.

Disabled people demanding more as consumers

The Commission identified that households with a disabled person spend £212 billion a year, the so-called ‘purple pound’. As such, disabled people and their families have the potential to be a powerful consumer base and influence how businesses serve them.

One example of this happening involves Rita Kutt, whose four-year-old grandson Caleb has cerebral palsy. Struggling to find popper vests to fit Caleb, she contacted Marks and Spencer to see whether they could stock these in larger sizes.

This led to Marks and Spencer developing a specialist clothing range for disabled children, which includes popper vests and sleepsuits. These are significantly cheaper than similar items sold by specialist retailers, making a huge difference to families with disabled children who face additional costs.

You can read more about Rita’s story on Scope’s community.

Disability organisations empowering disabled people as consumers

A number of disability organisations have been supporting disabled people and businesses with driving down disability-related costs.

We’ve created a ‘money hub’ with information to help disabled people manage their money more effectively, whilst Nimbus Disability has started to offer discounts to users of its Access Card. Whilst these are both fairly new, disabled people have so far responded positively to both of these initiatives.

Businesses serving disabled people better

Alongside the example of Marks and Spencer mentioned above, Uber has been thinking about how it can meet the needs of disabled people better.

They have developed a new service called UberASSIST for passengers requiring additional assistance whilst travelling. Uber has also introduced wheelchair accessible vehicles to its fleet in London. They plan to grow these services to enable more disabled people across the UK to access them.

There are a number of taxi and private hire vehicle providers that serve disabled people well, and it’s good to see Uber creating even more choice in the market for disabled passengers.

Read more about Kelly Perks-Bevington’s experience of using taxis and private hire vehicles.

What next?

Much more needs to happen to reduce extra costs for disabled people, so it is important that the momentum generated by the Commission is not lost.

As such, the Commission calls upon different groups to build upon progress so far to tackle disability-related costs. For instance, disabled people should continue to raise the profile of the ‘purple pound’, whilst company boards of businesses should act as champions for disabled consumers. A cross-governmental approach is also needed to help drive down the range of additional costs faced by disabled people.

Now that the Commission has ended, Scope will be taking forward the work of this inquiry, with a focus on addressing the extra costs of energy and insurance for disabled people.

For further information, please speak to Minesh Patel, Senior Policy Adviser at minesh.patel@scope.org.uk or on 020 7619 7375.

Share your experiences of claiming Personal Independence Payment

The Government has launched an independent review of how the assessment for Personal Independence Payment (PIP) is working. This follows a previous independent review of PIP in 2014.       

PIP, alongside Disability Living Allowance (DLA), is a payment that provides working-age disabled people with support to meet the extra costs of disability. Our research shows that these costs amount to an average of £550 a month.

These costs might include expensive items of specialised equipment such as wheelchairs, spending more on things like energy to keep warm or taxis to get around, and even certain types of insurance.

A call for evidence has been launched as part of this review to gather the views of individuals who have claimed PIP for themselves, or on someone’s behalf, about their experiences of the process. This includes new claims and DLA reassessment claims, both under normal rules and Special Rules for terminally ill people. In particular, they are interested in the following:

  • How effectively further evidence is being used to assist in making the correct claim decision.
  • Data sharing within the Department for Work and Pensions and across government, including the way information gained from the PIP assessment is shared with other organisations to improve health and care services.
  • The general claimant experience.

Sharing your views will help to inform the review’s final conclusions on the effectiveness of the PIP process, which will be presented to government.

How to respond

This call for evidence closes on Friday 16 September 2016, 5pm. You can respond via the online form.

Alternatively, you can submit a response in the following ways:

Email: pip.independentreview@dwp.gsi.gov.uk

Post: PIP Independent Review Team, Department for Work and Pensions, Floor 4, Caxton House, Tothill Street, London, SW1H 9NA

This call for evidence is available in a range of formats, including large print, Easy Read, audio, British Sign Language (BSL), Braille, large print, audio cassettes, CDs and BSL DVDs.

To request any of these formats, please use the email and post contact details listed above.

Tell Scope about your experiences of PIP

Scope will be responding to this call for evidence. We are keen to include the experiences of disabled people who claim PIP as part of our response. You can tell us about your experiences in the following ways:

Email: minesh.patel@scope.org.uk

Telephone: 020 7619 7375

My experiences of using taxis and minicabs: the good, the bad and the ugly

The Extra Costs Commission, a year-long independent inquiry into the extra costs faced by disabled people, found that disabled people may often experience a number of challenges when using taxis or private hire vehicles (PHVs), including overcharging, poor attitudes from drivers and an overall lack of accessible vehicles.

In this blog, Kelly Perks-Bevington, a twenty-seven year wheelchair user, tells us about her personal experiences of using taxis and PHVs.

As a business woman and someone with extremely “itchy feet”, I travel a lot!

When I am travelling in London, I am kind of limited in that I do have to use taxis to get around because there are certain tube stations that are still inaccessible. When I’m rushing from meeting to meeting, I find it easier to just Google how long a taxi is going to take and then hop in one. There’s less risk and you don’t have to worry if you’re stranded on the underground.

London is great in that it has a lot of black cabs and you can just hail one when you need one. But then sometimes you  call one over and the ramp in broken or they’ve got to go somewhere – basically any excuse not to get out and assist you getting into the car.

I’ve also noticed that there is sometimes a supplement when someone has to get out and put the ramp up for you. This can be up to £3 sometimes!

Often when I’ve phoned up for a PHV, it turns up and it is not suitable. I haven’t used an app to book a minicab yet but just tend to try and grab what I can get.

Kelly, a young woman, smiles in the back of a London taxi

Travelling in other cities

In other big cities like Birmingham and Manchester, a lot of companies advertise that they offer wheelchair accessible vehicles. However, similar to London  sometimes you can phone up, describe your exact needs and they will send a hatchback and expect you to fold your wheelchair up!

I’ve found that Cardiff is probably the best place for wheelchair accessible vehicles. The vehicles have straps and a proper area for you to sit in the back. It’s a lot safer than just being piled in the back of a black cab and rolling around!

Improving taxi and PHV services for disabled people

I’d want to see more training for staff so that they understand more about different disabilities they can expect to come across and the different equipment that people may use and how to assist these passengers.

A good number of accessible PHVs would be fantastic so that you’re not waiting an hour for one to arrive. It’s all well and good if you’ve got a couple of days to book in advance but what happens when you need to get somewhere in 15 minutes and you need to jump in a cab like anybody else would? You need to be able to work on a bit of spontaneity!

In ten years’ time I would love it if I could just book a taxi or PHV and have it turn up in the normal allotted time and be easy to get in and out of, with no extra charges and no grumbling from the drivers when they have to give you a bit of assistance! It would be great to see this outside of bigger cities too!

Today Uber has launched UberWAV , a new service offering wheelchair accessible vehicles in London. This is a welcomed step to increase choice for disabled people when using taxis and PHVs.   

Come on supermarkets – please stock nappies for disabled kids

Laura is a mum on a mission. She’s noticed a big gap in the market, and is campaigning for supermarkets to start stocking nappies in larger sizes. Here she tells her story. 

“Nothing worth having comes easy.”

Laura and her son Brody smiling on a rollercoaster rideMy life (well, house) is full of quotes. So much so, my best friend jokes with me about it. Still, on the days I feel like I’m fighting a lost cause, this one drives me.

Around a month ago, I started a change.org petition asking leading UK supermarkets to consider manufacturing or selling larger sized nappies, for incontinent children with additional support needs.

There are thousands of children in the UK, older than “typical” children, who are not potty trained. Naturally, as a result they require bigger nappies. Are they easy to find? Of course not!

My son Brody

A close-up photo of Brody amilingBrody has Global Development Delay, epilepsy, hypotonia and hypermobility. In our special world, he is known to a large community as a SWAN – not yet diagnosed with a syndrome to explain his disabilities. Brody is a tall four-year-old. He wears the largest nappies available in supermarkets (– 6+),  but they are fast becoming too small for him. Frustration with this led to my campaign.

Whenever my campaign is posted somewhere on social media, I get people commenting with recurring suggestions: the continence service, pull ups and cloth nappies. Let me explain why, despite this service and these products, I strongly believe there is a huge gap in the market for bigger nappies in stores.

What’s currently available

Brody has recently been referred to the continence service and hopefully, after a waiting time (my friend has been waiting six months so far) we will receive a set amount of nappies per day. These will arrive in bulk. The continence service is great and very much needed for families like ours. However, the service itself is inconsistent, varying greatly depending on where you live in the UK. This becomes more apparent, the more I speak to others. For example, I’ve heard from families who have children with autism who aren’t entitled, families who are only allowed two nappies a day, and families who aren’t eligible for the service until their children are six to eight years old. One woman told me her child has severe chronic constipation, requiring medication and at least 10 nappies daily. But she’s not yet entitled to any help from the NHS.

Pull Ups, which come in slightly larger sizes, are designed for children in the process of potty training. Hence there are fewer nappies in a pack and the absorbency isn’t as good. They’re not adequate for a child who is doubly incontinent. Not only this, it would cost a small fortune for parents to buy Pull Ups, as one pack may last only a day or two.

Cloth nappies may suit some children with additional support needs, and there are some fantastic companies where parents can buy these online. However, this isn’t a best fit solution for every parent and child for many reasons (although, I’ve found a lot of cloth nappy fans will argue this point).

Life costs more when you’re disabled

The simple truth is thousands of parents require larger nappies because their children are either ineligible for the continence service, or require more nappies than they receive. As such, they are forced to buy online because they have no other choice. These nappies come with the classic ‘special needs’ price tag – overpriced! The sad reality is – life costs more when you’re disabled.

Online shopping can also be inconvenient because you have to wait for an order to be delivered. Not as simple as popping to your local supermarket when you’ve run out of a product.

Disabled consumers are a big market

Brody on a red plastic rockerIf you are in my shoes, you’ll be all too aware that people don’t think about these things unless it affects them. However, it really shouldn’t be this hard. The Extra Costs Commission report noted that there are over 12 million disabled people in the UK – that is almost 1 in 5 of the population – and our households’ expenditure, the so-called ‘purple pound’, totals £212 billion a year. That’s a lot of money. And high street businesses could take advantage of it.

I strongly agree with Scope that by sharing information about our needs and expectations as shoppers, and by being more demanding as consumers, companies will have the market data to serve us better. We need to shout loud and let our voices be heard!

We are a community, used to fighting battles. Please fight this one with me. Sign the petition and share it with your friends. Maybe together we can make a difference – one that would benefit many families.

My message to the supermarkets?

You have the opportunity to take the lead and cater to a huge consumer group – one that is often disregarded. Please listen. This is about supply, demand and inclusion. It’s simple – there is a demand for this product and you can provide it. Just take M&S as a wonderful example. Grandmother, Rita Kutt wrote to them and explained the need for larger sized clothes with popper buttons for disabled children. They listened! We are consumers – like everyone else – that should be heard.

What do you think? Could you benefit from being able to buy this product in a supermarket near you?

The Extra Costs Commission has called for disabled consumers to be ‘bold and loud’ just like Laura.

Consumer power! M&S release new clothes range for disabled kids

Rita’s adorable young grandson Caleb has cerebral palsy. He needs nappies, and he’s also peg fed through his stomach, so accessible clothing with poppers is pretty essential. Rita noticed a huge gap in the market for affordable clothing for older children, and contacted Marks and Spencer to see if they could help. 

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