MPs want to hear about your experience of PIP assessments!


Arthur Thomas Campaigns Officer

Arthur Thomas Policy & Campaigns Officer

MPs want to hear about your experience of the PIP (personal independence payments) claims process, by this Thursday!

They want to hear:

  • Your experience of the PIP assessment process
  • If you have experienced backlogs
  • About the quality of assessments
  • Any difference between Atos and Capita

As part of our PIP’d Off campaign NDCS are working closely with the Disability Benefits Consortium (DBC) to campaign to make the PIP claim process accessible and fair. The DBC have set up a survey so that people can submit their experiences  as a group. The closing date for submissions to the PAC inquiry is this Thursday, 28 January 2015, so  lets get cracking!



You can also tell MPs your story via twitter by tweeting comments to @CommonsPAC on Twitter with the hastag #disability.

If you have any questions, you can contact the NDCS Campaigns Team at:

We’re PIP’d Off

Liz Partridge, Senior Policy and Campaigns Officer

Liz Partridge, Senior Policy and Campaigns Officer

Deaf young people are reporting problems with all aspects of the process to claim the benefit, Personal Independence Payment (PIP).

From having to use the phone to request an application form, to staff lacking deaf awareness and finally being denied the benefit, the process discriminates against deaf young people.

Unfortunately the Government decided to rollout PIP to all from July 2015 before fixing these problems.

PIP’d Off campaign

In response we have launched a new campaign, PIP’d Off. This campaign calls on the Government to improve all aspects of the claim process for deaf young people. As part of this campaign, we’re asking people to take action and call on the Government to halt the rollout out of PIP until it is fully accessible to all deaf young people. Almost 800 people have emailed the Government about this issue so far!

Here’s what some people had to say in their messages to the Disability Minister:

 “When I received a letter from Department of Work and Pensions, letting me know that my DLA was due to end this year and I needed to apply for PIP instead. On the letter, it was stated that I had to PHONE them to get an application form so I could get started on applying for my PIP. I am 26 years old and I had to ask my mother to make the phone call on my behalf. It is not acceptable to expect a deaf young person to ask others to make the phone call for them. This takes away their right to independence and privacy.”

“I personally have had to write to get a PIP form sent to me, only for my application to be dismissed as it is deemed I ‘cope’ well with my life long disability. My husband has had to ring for another form as since having my first child, who is also deaf, my deafness is causing more difficulties for me. The CAB have advised I should be entitled to PIP hence trying again. There needs to be Deaf aware specialists working on Deaf cases and applications to ensure those of us ‘coping’ with this hidden disability get the support we deserve.”

“My daughter, who is nine, is deaf.  I worry greatly about her future.  This present government appears to singling out the most vulnerable in society and it does not reflect well on your party,  Surely it is better to help young deaf people become contributing members of society, paying taxes, etc. rather than living a life dependent on government support?”PIP'd Off

“Whilst it is good the Department is taking action, I need to admit why was this not planned at the very start, please, in accordance to the Equality Act  and consulting with experts like us Deaf people? The process should have been accessible for everyone from the very outset. There is anxiety amongst young deaf people and their families/carers that the email trial and the development of the online system are still not complete.”

“Surely, the Government should be setting an example against any form of discrimination furthermore I suggest that this is a breach of disability access rights and disability equal rights. An obstacle that wouldn’t be allowed should it be a physical obstacle against someone’s access to buildings etc. There is no difference, an obstacle for a disabled person’s rights is still an obstacle and the Government are guilty of putting obstacles in place in this instance.”

“We have a number of children with hearing impairment at school and two in particular whose disabilities will be life long. Looking ahead to their future I would like to think that those governing our country will consider ensuring that there really is equitable access to welfare benefits for the disabled. These young people have to work harder than their peers to achieve the same results. Everything is a challenge including socialising. Please look again at the PIP for these youngsters – they have the right to independence in the same way that every young person without disability does”.

“It is imperative that equal access is a priority & the timetable for the rollout of PIP needs to be addressed to ensure any minority group is not disadvantaged. This has very serious implications & the Government has a clear duty of care to ensure all citizens are treated equally – not the case at the moment!” 

Take action

It’s clear that many people are not happy about this issue. Please have your say as well and take action as part of this campaign. Call on the Government to halt the rollout out of PIP until it is fully accessible to all deaf young people!

Find out more

Find out more about PIP’d Off and watch out for more blogs reporting on the progress of this campaign.

Get in contact

We would like to hear from you if you are a deaf young person (16-25) and have struggled to claim PIP. Please tell us your story by emailing

My PIP story

KayelyHello. My name is Kayley MacGregor, I am 21 years old. I have been deaf all my life and have worn two hearing aids since I was 4. I live in the very North of Scotland in a small town called Wick, I am a qualified Early Years Practitioner and work in a playgroup. It can be hard sometimes because of the noise and young children’s speech isn’t always the best, but I love my job!

I have been doing some research over the past few years about disability benefits, but I couldn’t really see much for deaf people. In 2010, I applied for DLA but was told because I didn’t need any help doing things for myself I wasn’t able to get it.

I recently moved into my own house, with my boyfriend, so I went to citizens advice for help on benefits in general not just disability ones. I asked about DLA again and they explained it was now PIP and we looked through the criteria together. It turns out I only got 2 points and needed more. I did not need an interpreter, etc so therefore I was not eligible for PIP. I felt that I didn’t get to put across my individual struggles. I felt this unfair as in Wick most of the jobs which are in shops, restaurants, offices, etc. Now I am not saying deaf people cannot do these types of work, because they can, it’s just that it can be difficult. I know this because I worked in a shop and found it extremely difficult. My hours have been cut down at work and I am looking for another job. PIP would have helped financially. I feel really disappointed that there is not enough help for deaf people.

I now plan to look into PIP again and get some support from NDCS on what to do next.

The Tyranny of the PIP Overlords

James DaviesAnd how I suffered from their wrath…..

My name is James Davies, I am 24 years old. I am a recent cochlear implantee (as of Feb 2013) prior to that I have always worn hearing aids. I live in the South of England in rural Surrey, employed as a Project Engineer for a respectable company.

I started the process of applying to PIP some point late May 2014, I had realised that I needed some form of help as I gained more independence (I was moving out) and needed some financial help. My friends at the time (deaf peers) recommended me to apply for DLA (they didn’t know at that point it was called PIP) and that it was a fairly straightforward process.

So I started my research, in this I found that DLA no longer exists for adults, it was re-named PIP and changed under the new Tory government. Ok I thought, just a new name and system.

First problem I came across was pretty obvious. The only way I could get the application form was contacting them via phone, now obviously I can’t do this at all. So I thought ok I’ll look for an email address since this is the internet age and surely they would have one. NOPE, zero zilch nada… no form of email contact to request an application form is listed.

So thus I contacted a charity in Farnborough called deafPLUS who agreed to phone on my behalf, I had to take some time off work just to make a bloody phone call to claim a FORM! Even that was stressful, due to them asking repeatedly to talk to me (suppose they didn’t realise deafness existed lol) and the woman who helped trying to explain that I could not hear the phone and she was speaking on my behalf. Anyway I managed to get that form request submitted and it came in the post around June 2014.

I read through the booklet that came with questions, It was immediately clear that it was based on a point scoring system to which I thought was detrimental to deaf people like myself. I was already sceptical that I would have any chance of getting this benefit.

The questions are very vague, and not very straightforward. I had no idea what to put, so I put some answers that I guess answered the question more directly. I suppose this was a mistake, I could have answered the question however I wanted, adding more information related to how my deafness effects me in the question they ask.

There was not much information on the internet from deaf people who have applied for PIP (relatively new at the time) for me to use to my advantage.

I felt this form was impossible, none of the questions really help a deaf person to portray their problems and why I feel I am entitled to PIP.

After I had filled it in it felt like had barely answered some of the questions.

I received an answer in November 2014, formally rejecting my application for PIP. I was devastated, I had no chance with this system. My problems in everyday life could not be explained in this restrictive form.

Ironically, the letter stated that I would be phoned up and explained why I hadn’t received the benefit. Huh? Did this guy even read my application? He would have read that I CANNOT use a phone, let alone hear very well….

I cannot remember but I think they phoned me on my mobile, obviously I couldn’t answer the phone. I was at work as well, no one could have possibly picked it up for me, it is my personal matters too.

After that phone call I don’t think I received anything. That was it.

Now I know I could have appealed against the decision but I was so disheartened by the process and I felt I would never win, the questions and acceptance criteria is flawed.

I have since this not tried to reapply, I missed the 1 month appeal time.

I hope to try again with some help.

Problems with PIP

Liz Partridge, Senior Policy and Campaigns Officer

Liz Partridge, Senior Policy and Campaigns Officer

We are becoming increasingly concerned about the experiences of deaf young people trying to claim the benefit Personal Independence Payment (PIP).

Our concerns:

It is quite extraordinary that the application process for a benefit that is designed to help people with a disability is not accessible for all those with a disability, such as some deaf young people. It makes a massive assumption that everyone has a phone and can use a telephone to make a request for an application. Yes, you read that right, deaf young people are expected to call up for an application form, or if they are unable to do so, ask a family member to call on their behalf. Talk about stripping a young person’s independence from them at the very outset! There is a textphone option but to be honest the likelihood of anyone under 30 owning a textphone is very remote! Alternative, ways of applying for the benefit such as via email or the website are not promoted or encouraged. It is shocking that deaf young people are having to hurdle…or maybe it’s more appropriate to say ‘pole vault’ their way over barriers that should not be there in the first place. And this is before they’ve even made it to their assessment!

  • You need a BSL interpreter at the assessment? They might forget to book it and ask you to continue with the assessment anyway!

We are aware of a case where communication support was not provided at an assessment, despite it being requested and that request agreed to. When it was clear the communication support had not been arranged, the assessor suggested the meeting go on without it! This demonstrates an extreme lack of deaf awareness which could jeopardise the chances of the deaf young person being awarded PIP and which causes considerable stress to the deaf young person involved.

  • If you are deaf you may not qualify for PIP but if you go to the effort of taking legal action against this decision, they might change their minds and apologise!

We are aware of a number of cases where an assessor and the Department for Work and Pensions (DWP) has determined that a deaf young person is ineligible for PIP. The deaf young people in these cases have had to take legal action about the decisions. In one case the decision was reversed, the deaf young person was awarded PIP and the DWP apologised to the deaf young person and their family. The other case is currently ongoing. These cases have placed a great deal of stress on the deaf young people involved.

What we are doing about it
We are currently asking the Government what they are doing to improve the experiences for deaf young people in this process and continue to work with deaf young people to challenge any decisions where appropriate.

Share your story
If you are a deaf young person aged between 16 and 25 and have experienced difficulties claiming PIP, please let us know about it – email

The government is capping deaf young people’s ambitions and aspirations

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

One of the biggest fears that parents of deaf children have, when they find out their child has been identified as deaf, is that they will never be able to have a job.

That misconception can be quickly dispelled by looking at the range of careers that deaf adults have successfully forged including GPs, lawyers, teachers, chefs, and so on. Deafness in itself is not a learning disability and, at the National Deaf Children’s Society (NDCS), we firmly believe that, providing deaf young people get the right support, there should be no limit to their ambitions and aspirations.

For many deaf young people that support is provided through ‘Access to Work’. Often described as the government’s ‘best kept secret’, this is a scheme that offers funding to disabled employees to cover the costs of any support they might need as a result of their disability. Deaf people may use this support to fund sign language interpreters or ‘speech to text’ notetakers, who capture word for word dialogue in meetings.

The government has set itself a target to halve the disability employment gap over the course of the next parliament. Access to Work support will be central to meeting this target. However, there are plenty of indicators that the Department for Work and Pensions, which runs this scheme, may well fail in this endeavour unless they rethink their approach on how this scheme operates.

Firstly, it is not yet clear if the government will increase funding to the scheme. In 2013/14, the budget stood at £108m, slightly up from £105.5m when the coalition government came into power in 2010. Unless the government provides additional funding, it seems clear that the only way they can provide support to more disabled people is by squeezing the support provided to existing users.

This seems to be the approach the government has been taking over the past year. In March, the government announced it would ‘cap’ the total amount of support that any individual can receive. An ‘equality analysis’ by the government has revealed that over 200 people will be affected by the cap, of whom 90% will be deaf. Whilst to some people a cap may seem a good idea, we believe it’s a bad decision, badly made. This is because:

1) Civil servants have failed to do any cost benefit analysis of Access to Work. There is a real risk that deaf people might lose their jobs as a direct result of the cap. It is not unreasonable to assume that the government saves more from having disabled people in work, paying taxes and not living on benefits, than it spends on Access to Work. Yet this government has no idea whether or not this cap will actually save money.
2) The government has not considered the impact the cap will have. It has failed to do any kind of public consultation or even to engage with the people who will be affected or their employers. A general commitment to “monitor the impact” will be of little help to any disabled person who loses their job as a result of the changes.
3) The cap punishes deaf people for the cost of communication support, something they have little control over. The government could have chosen to invest in a training and recruitment programme for communication support professionals. To date, the government seems content to leave it to the ‘market’ to resolve the current shortage of communication support professionals.
4) The government says that a cap is needed to save money. But, as Limping Chicken has recently revealed, there is actually an underspend of £3m on the overall Access to Work budget. So why is the axe falling on deaf people who may need more support?

Official policy and written ministerial statements tell only half the story, however. On the ground, NDCS regularly comes across stories of Access to Work advisers trying to reduce support packages. Some of these examples are documented in a blog by Charlie Swinbourne for The Limping Chicken website, which suggests that some deaf young people are being ‘bullied’ by Access to Work officials, rather than supported in their jobs.

A timely demonstration of how ill-informed and poorly trained Access to Work advisers can be is the new interpretation of a rule, known as the ‘additionality’ rule, brought in earlier this year. This arbitrary decision saw advisers effectively telling employers they would be better off recruiting a hearing person because interpreters were effectively doing the deaf person’s job for them. The ill-judged interpretation was hastily withdrawn.

It is sometimes hard to know if advisers are just badly trained or if there is a policy to make it as difficult as possible to claim support. For example, many deaf young people have, in the past, been told they cannot make a claim for Access to Work unless they call a designated telephone number. Civil servants seem oblivious to the communication needs of the very people they are publicly committed to supporting.

The problems and issues have been noted by Parliament. A parliamentary inquiry last year received 340 responses following a call for evidence, including from the National Deaf Children’s Society and many deaf people themselves. The committee published its report in December last year. The report was scathing of the support provided, noting that some changes had “threatened the employability” of deaf people. However, despite three months to prepare a response before the election, the Minister, Mark Harper, broke a well-established convention by failing to issue a response to the report, citing lack of time. The same lack of time didn’t, however, stop his department from introducing new cuts to Access to Work in March 2015.

In light of these failings, NDCS does not feel optimistic about the prospects of deaf young people entering the workforce.

The Department for Work and Pensions reassures us that steps are being taken to improve customer service. But it remains difficult to see how deaf young people are expected to navigate the Access to Work process.

Many of the deaf young people we work with are unaware of the scheme or the different types of support for which they are eligible. If Access to Work was working well, there would be an extensive outreach programme for deaf young people leaving school. An advisor would support them with their application, and perhaps allow them to ‘test’ different packages of support. Instead, they are likely to be issued with a blunt demand to prepare a ‘support log’ of the work they will be doing over the coming months – a tall order for anyone, especially one starting a new job. They are then forced to accept or negotiate an inflexible package that may or may not meet their needs.

Access to Work is also still unavailable for unpaid and informal work experience opportunities even though – rightly or wrongly – these are a vital step on the career ladder.

And what of those deaf young people who need ongoing regular support in order to thrive and prosper at work? The cap has sent them a very clear signal – to cap their aspirations and settle for something beneath their hopes and expectations.

This is not the message any government should be sending to deaf young people or their families.

What are the parties promising to do on welfare and disabled rights?

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

Our final blog on the election manifestos takes a look at what the parties across the UK are promising around welfare and rights for disabled people.

Disability Living Allowance
An earlier blog talked about how Personal Independence Payments (PIP) have been replaced by Disability Living Allowance (DLA) for those over 16 and our fears that a large number of deaf young people will see their benefits cut as PIP is rolled out. One of our big concerns is that any new Government will make similar changes to DLA for those under 16. This could result in many deaf children and their families losing out.

The SNP and the Green party are the only parties to specifically mention DLA / PIP in their manifestos. The SNP in Scotland have said that they will reverse the changes to DLA and the £3bn cutback to disability spending. And the Green party have said they will increase the budget for DLA / PIP.

Plaid Cyrmu in Wales make no specific commitments on DLA or PIP but their manifesto states they oppose further ‘austerity’ more generally.

The Liberal Democrats have made a general commitment to “limit welfare reductions”. Separately, they have also said that they will invest to clear any backlog in waiting times for assessments for DLA and PIP.

The Labour party have said they will cap structural social security spending. And the Conservatives have said they will cut the welfare budget by £12bn. As yet, neither party has given any detailed information on how they will do this so it remains unclear if disability benefits for children are at risk of being cut.

UKIP make no specific pledges on disability benefits for children but their manifesto indicates they wish to reduce government spending overall.

NDCS is calling on the Government to rule out any cuts or narrowing of eligibility criteria to welfare support for disabled children.

Support in work
Many deaf young people rely on Access to Work for support in employment. None of the manifestos indicate whether they will keep or ditch the cap on Access to Work payments announced by the Government just before the election. However, both the Green party and the Liberal Democrats have said they will do more to promote the Access to Work scheme. The Liberal Democrats also say they will streamline back to work assessments for disabled people – working towards a single assessment and benefit. They will also encourage employers to shortlist any qualified disabled candidate and provide advice about adaptations in the workforce.

Labour have said they will introduce a specialist support programme to provide disabled people with tailored help on moving into employment. It’s not yet clear how this will sit alongside the Access to Work scheme.

The Conservatives have said they are aiming to halve the disability unemployment rate.

Plaid Cyrmu state they will provide greater opportunities for disabled people to find jobs across Wales through proposals for a new Welsh job search service. They also pledge to involve disabled people and groups in designing any new Welsh employment and benefits system that supports individuals to find suitable jobs.

The UKIP manifesto states that they want any assessments for disability work benefits to be done by GPs or relevant specialists, rather than companies like ATOS.

Rights for disabled people
The Liberal Democrats have pledged to formally recognise British Sign Language as an official language of the United Kingdom.

Both UKIP and the Green party express support for the UN Convention of Rights of Persons with Disabilities in their manifestos, with the Green party saying they will ensure it is enforced in law.

The Labour party has also said they will ensure that disabled people have a voice at the heart of government inviting disabled people to sit on cross-departmental committee that develops disability policy

The above is a very general summary of the pledges and we’ve only highlighted those that we think are most directly relevant to deaf children. We’ve included links to the manifestos above if you’d like more information about what each of the parties are proposing. More information about the manifestos from the Northern Ireland parties can be found on the BBC website.

Don’t forget, if you want to find out more about what the parties are proposing, you can ask your prospective parliamentary candidates. They need your vote and hopefully will be responsive to any questions you might have! Ask your candidates what they know about deaf children and call on them to protect the services that they rely on in the next Parliament.

The Your Next MP website has information on the candidates in your area and our website has more information on the election, including a detailed election factsheet.