James Davies: The tyranny of the PIP overlords

Sadly this does not shock or surprise me. The purpose of the change from DLA to PIP was to save money and Deaf people are an easy target. As you say, just the means of applying in the first place is inaccessible to Deaf people ( I’m sure that must be giving a two fingers up to the Equality Act). I recently accompanied a friends 16 year old daughter to her PIP interview as NO interpreter had been booked and to be quite honest, the system is a demeaning shambles. ATOS employs a variety of health care ‘professionals’ to conduct these
assessments but how a paramedic has the expertise to assess the impact of being profoundly deaf on everyday life eludes me. Anyway, we did our homework and got some good tips about what sort of issues to explain from the NDCS guide, at the interview it was patently obvious that this chap had very little understanding of Deafness, for examples he thought her radio aid was a recording device! At the end of the assessment he said that despite comprehensive audiology reports and evidence from TOD, speech therapy etc, he needed to do a hearing test. Now this was the masterpiece! The hearing test was very high tech and consisted of him saying a word behind her back and seeing if she could guess what he said- this is no word of a lie, he actually did this. We obviously challenged the appropriateness and validity of this but “it had to be done”. I cannot imagine a more demeaning and unreliable way of assessing a deaf person. We will be visiting our MP. The way people are assessed for this benefit takes no account of the specific needs of Deaf people and is just designed to weed out as many claimants as possible.

Even with DLA, it was not unusual for DWP to automatically reject Deaf people’s claims. Tribunals are independent and they often overrule the decision makers’ conclusions. So it’s good advice to 1 always appeal a rejection. My other golden rules are:

2 Always seek advice. Welfare advisors can be better than solicitors, because the former specialise in their subject. Your council may have a ‘welfare rights team’ (google is your friend,) but the CAB are also good.

3 Never fill in the form yourself. This is a specialist skill -best left to the specialists!

The only exception I would make to the above 2 is if you decide to use the excellent ‘Benefits and Work’ website (google.) They provide written guides to take you through the forms, which actually may be the best option for some Deaf people. They charge a small subscription, but in my opinion, it’s well worth it.

4 Always ask for and use an appropriate interpreter at assessments and tribunals. They want to see if you need a ‘carer’ – show them that you do, rather than struggle to understand.

I have been tweeting at Action on Hearing Loss, NDCS and BDA asking if they can/would create “Deafness specific PIP info”. I might ask Charlie if this can be an article in itself!

What exists as of today:
1) NDCS young people’s page with video + PDF factsheet is closest to deaf-specific information. It suggests what you might need to spend PIP money on and provides some guidance about the forms and process.
http://youngpeople.ndcsbuzz.org.uk/infoadvice/ref:I52441A22E2A20/title:Important1+Changes+to+your+benefits./
I do think the questions need to be broken down more.

2) AoHL have structured short BSL videos signed by Mark Nelson with English and subtitles explaining PIP step by step.
http://www.actiononhearingloss.org.uk/supporting-you/benefits-and-personal-independence-payment.aspx
This information is widely available in English but I haven’t seen it anywhere else in BSL so that’s great! There is one video which covers eligibility for PIP expressing AoHL’s concerns. I would like to see AoHL think about questions we should consider while completing the form – I can think of several!

3) BDA have a 55 minute long BSL video about PIP changes from DLA.
http://bda.org.uk/News/187
A long video but looks like it might be interesting if you have the time to spare and I think is important. I haven’t watched it all yet.

So why am I talking about “disability specific information”:
I have helped several people successfully and easily apply for PIP (and previously ESA and DLA). Because of my employment I am used to asking people specific questions about their every day life as a deaf and or disabled person and comparing those answers to what a non-disabled and hearing people are used to.

The person reading the PIP forms it knows very little about deafness (or disability). You HAVE to tell them even if that seems unfair. They don’t know what it is like to be deaf, how people treat us, how much we don’t hear, know about or understand because of poor accessbility or awareness. They don’t know that you might miss trains because you don’t hear announcements, or that you cannot understand strangers when out in public.

As well as explaining deafness very clearly. You HAVE to use special language. For PIP that is explaining how “safely” (without pain, nausea, tiredness/fatigue, dizziness etc) “repeatably” (how often you can and need to do a task), “to an acceptable standard” (how well you can do something) and “timely” (how quickly you can do it). You then have different questions, 15 in total where you can “pick up points”. For deaf people with no additional needs you won’t get any points in most areas like toileting or cooking/eating etc. The main area is verbal communication and maybe some of the mobility sections – we aren’t sure yet as not enough people have applied and tested it out.

Ideas for how deaf people may link with these include:

1) Safely – Does listening or trying to understand speech make you tired or fatigued? Do you get dizzy from the effort? Think about Ian Noon’s concentration fatigue article.
2) Repeatably – Can you always understand people? Are there times you don’t have a hearing aid or cochlea implant in? Can you hear everyone you need to hear even if it is noisy or crowded?
3) Reliably – How often do you misunderstand what is spoken to you? How often do you have to ask the person to repeat themselves? Do you have to have things written down?
4) Timely – If you have to have information repeated a lot, or spend time explaining your needs, or write things down, this could take you more than twice as long as a hearing person would. You could get some points this way.

I could probably write some questions for deaf people in PIP but I think deaf organisations might be better at it and I’ve got enough to do without doing their work for them. I hope they can improve their content and if I get bored and have ideas I’ll send it to them to host and improve.