Parliamentary Inquiry into PIP

Sally Etchells, Policy and Campaigns Officer, National Deaf Children’s Society

For a signed video of this content please click here!

Have you had a Personal Independence Payment (PIP) assessment? Did you appeal against the decision? Do you have views on what went wrong or what needs to improve?

If you have, the House of Commons Work and Pensions Select Committee wants to hear from you!

The committee is a powerful group of MPs whose job is to hold the government to account, highlight problems in the system, and make sure the government listens to real people who have been affected by issues such as benefits reform.

The committee has just launched a new inquiry into PIP and Employment Support Allowance (ESA). It is particularly focusing on the assessment stage of the process, but also Mandatory Reconsideration and appeals too.

It is so important that the voices, experiences and situations of deaf young people are heard by the people in power who can actually make a difference.

If you’ve been affected by PIP, we want you to fill out the short form telling MPs exactly what you think is wrong with the system, and how it can be improved for deaf young people.

The deadline for submitting evidence is Friday 10 November. You can find out more about the inquiry and how to submit evidence at this web page:

http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/inquiries/parliament-2017/pip-esa-assessments-17-19/

If you want to provide evidence in a non-written format, you need to contact the committee staff by emailing workpencom@parliament.uk

house of commons

My experience of Labour party conference…

Erin 1

Erin McKay

Hello, I am Erin and I’m from Wiltshire. I have a hearing loss and wear two hearing aids. I am currently doing A Level History, Philosophy and English Literature. I attended the Labour Party Conference and I’d like to tell you a bit about my experience.

On Sunday 24 September I got on the train to Brighton. It took a little under four hours to get there. I was on my way to the Labour Party conference where I had 8 meetings lined up to talk about three campaigns that the NDCS are doing. They are Listen Up to improve children’s audiology services, Right to Sign, putting British Sign Language (BSL) in schools as a GCSE and PIP’d Off, about Personal Independence Payments, and the difficulties that deaf people have in getting them. I talked about the Right to Sign campaign as it was the one I helped create with the last Youth Advisory Board.

On the Monday, Brighton was quite rainy and we arrived at the hotel at around 10am to get ready for our first meeting, it was with Sharon Hodgson, the MP for Sunderland West. She is the Shadow Minister for Public Health. She was really nice and we talked about Listen Up, Right to Sign and PIP.

Erin and Sharon

While we were talking with her, the next MP arrived – Alex Cunningham of Stockton. He was also really nice. He gave us some ideas of what to do with the campaigns and who to talk to about different bits. He agreed to ask his local hospital to sign up to the inspections for Listen Up!

Our next meeting was with Liz Twist who is the new MP for Blaydon. We talked about Listen Up! and Right to Sign. Afterwards we met Stephanie Peacock who is also a new MP, for Barnsley. She agreed to ask her local hospital to be part of the inspection process and we also talked about Right to Sign and having Teachers of the Deaf in Schools. We then had a break for lunch and walked around the exhibitions.

After lunch, we saw Jeremy Corbyn and John McDonnell. I managed to get my picture taken with both of them. Our next meeting was with Dawn Butler, the MP who signed a question in parliament. We talked to her about Right to Sign, and she seemed surprised to see that I couldn’t sign. She had already done most of what we wanted to ask her to do, and she was happy to talk about other things to help our campaigns. Next was Helen Goodman who had done a lot of work already with the National Deaf Children’s Society and she was very happy to help us. We talked about Right to Sign, Listen Up and PIP.

Erin labour

Our last meeting was with Tracy Brabin, who was friends with Jo Cox, who I wrote a bit about loneliness for. We also talked about Listen Up and Right to Sign. I had a really good time and would like to do it again.

The best bit of my day was seeing the taxi drivers showing their support for the Uber ban in London by beeping their horns. It went on for about 20 minutes and was really loud! I also liked meeting all the different MPs. Top tips from me for conference are: to share – talk to the MPs and ask questions if you don’t understand something; they are ordinary people.

PIP’d Off Campaign Update – Justin Tomlinson meeting…

Jessica Reeves Campaigns Manager

Jessica Reeves, Campaigns Manager

Last week, after over 800 of our supporters wrote to him, we met with the Minister for Disabled People, Justin Tomlinson to talk about why people are so PIP’d Off with the Personal Independence Payments (PIP) process. NDCS Chief Executive, Susan Daniels and I met with Justin and representatives from the Department for Work and Pensions to explain how deaf young people are currently missing out on PIP.

We discussed the following issues, which you had raised with us:

YAB member Liam O'Dell meeting with Justin Tomlinson at party Conference

YAB member Liam O’Dell meeting with Justin Tomlinson at party Conference

  • Why so many deaf young people are missing out on PIP because the current guidance fails to recognise the support that many deaf young people require to communicate with their hearing peers
  • How face to face assessments are putting deaf young people at a disadvantage by placing them in unrealistic situations which do not take into account the difficulties that many deaf young people face in the real world, in noisey environments, trying to engage with non deaf aware people
  • The fact that deaf young people currently have to telephone to ask for an application form and how NDCS can help make sure that a digital claim process is available quickly and is accessible to young deaf claimants

The meeting was really productive and Justin was interested to hear about the issues that young deaf people are currently facing and he has said that he is keen to improve the system.

We will now be working with the Department of Work and Pensions to improve the current PIP guidance and improve deaf awareness at assessments.

I want to say a big thank you to all our supporters and Campaigns Network members without which this excellent result would not have been possible.

We will keep you posted!

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 campaigns@ndcs.org.uk

Welfare Reform in Scotland: Personal Independence Payments

Lois Drake, Policy and Campaigns Assistant, Scotland

Lois Drake, Policy and Campaigns Assistant, Scotland

The Welfare Reform Committee at Scottish Parliament is looking for views and experiences of Disability Living Allowance (DLA) and Personal Independence Payments (PIP). They want to firstly, gain a better understanding about how the new welfare system is affecting people in Scotland. Secondly, they want to use this understanding to inform new social security systems that may be developed in Scotland following further devolution of welfare powers in 2017.

You may be aware of our concerns around the application and assessment processes for deaf young people and PIP which we raised in a previous blog. For example:-

  • There is an expectation for applicants to use the phone when requesting a PIP application form;
  • We have had reports of a lack of deaf awareness at assessment meetings; and
  • We know of deaf young people who have not been granted PIP then had the decision reversed after legal action

Have your say!

What’s your experience of the PIP process? The Committee are looking for individual views and experiences, whether you are a new applicant or changing from DLA to PIP. They are keen to learn about any aspect of your experience of PIP including:-

  • The PIP claim form and the PIP assessment process – including where your assessment took place;
  • The decision made on your PIP claim and payment of PIP.

Why not email your story to the Committee at welfarereform-yoursay@scottish.parliament.uk.

Alternatively, you can share your experiences with us at campaigns.scotland@ndcs.org.uk.

NDCS will also be submitting a written response to the Committee’s call for evidence which closes on 28 August.  We are hoping to bring together a focus group for young deaf people to share their views and experiences of DLA and PIP to inform our response. If you would like to be part of this group email us at campaigns.scotland@ndcs.org.uk.

You can also take action and email the UK Government Disability Minister, Justin Tomlinson and ask him to ensure the PIP claim process is accessible to all deaf young people.

We will keep you updated in further blog posts so watch this space!

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.