PIP, which is short for Personal Independence Payment, (known as Adult Disability Payment in Scotland) is a UK government disability payment. This is not means-tested – meaning that it doesn’t matter how much you earn, and how much you have in the way of savings – it’s an entitlement, for everyone who qualifies.
One of the most misunderstood aspects of PIP, is that it relates to the condition or disability that you have. It doesn’t. It is awarded based on the level of difficulty that you have in completing your day-to-day tasks. The idea is that it compensates you for needing to make more effort to achieve the same everyday activities that others who don’t have disabilities can do.
It’s all sounding quite positive so far BUT, and I do speak from personal experience, sadly it isn’t as straightforward as it may sound. You will find discussions about PIP on plenty of neurodivergent forums and Facebook groups, for good reason. These appear often because it can be such a daunting and confusing process for us. We often don’t even know whether we can claim it, why it’s so complicated and why we are refused it, when we have evident needs that are going unaddressed.
Sadly, claiming PIP, or the Scottish equivalent, is harder than it needs to be, in my opinion, and based on the thousands of others’ experiences that I have read, for autistic people that may or may not have additional disabilities. It is a lengthy and often difficult process. The application process isn’t based on what condition you have – whether it’s a physical, mental, or neurological disability, or a combination of these.
It’s all about whether the difficulties you experience in your day to day life could be helped by additional aids to help you achieve those daily tasks, and this assessment is made on a points basis. This could be, for instance, in the form of a SAT NAV, if you cannot navigate away from your home without help, or whether paying someone to assist you – to drive you, to attend appointments with you, to help you bathe, pay bills, take medication, cook, socialise or communicate more generally – the list is a long one and too complex and varied to cover here.
They will ask you to provide any supporting evidence that you have – whether that’s GP or hospital records, medication, a note from your therapist or anyone that is involved with your day-to-day life and is aware of your additional needs. The more of this support you can provide, and the more specific you can be about your additional needs, the more straightforward your application should be. I learned the hard way that simply giving my GP records was not enough, despite the plethora of supporting information they contained. Second time around I gave them the works. We shouldn’t have to do that, but it worked, and I got my full entitlement on appeal.
However complicated or straightforward your application, be prepared to wait at least 4 months for your application to be completed. The exception to this is if you are terminally ill, with an expected prognosis of less than 12 months – in which case your application will be quick and straightforward, as it should be.
I would be lying if I said that this is an easy application. It’s not that the questions are hard, it’s that they are very much geared towards those with physical disabilities and I personally feel that the questions should be updated to show more respect and understanding of the needs of autistic people. The questions are so loaded towards physical disabilities, it is really difficult to express your difficulties within those rigid questions. Don’t be afraid to step outside of those rigid questions. Expand where you can. Unfortunately, in my experience, not all call handlers are experienced in neurodivergent needs. But if you possibly can, keep holding your head high and explaining your limitations and your needs.
For those who have their application refused first time round I would recommend you go to appeal. I would also recommend you make a complaint about your original application. I was awarded the very basic payment first time round but I have read enough other experiences by neurodivergents to know that going to appeal would be pretty much standard. The act of making that complaint and appealing, sends you to a completely different assessment company, and they were a lot more understanding of our differences and our communication barriers. Many more applicants are successful at the appeal stage, if you can face it.
It’s a very stressful and frustrating time. It’s why so many of us just can’t face the process and we consequently miss out on much needed financial support. And the support doesn’t stop there. Once you qualify for PIP at the standard level, you also qualify to claim Carer’s Allowance if someone like a partner, relative or friend cares for you for more than 30 hours per week – and that claim is easy – you simply put your PIP reference number and answer some basic questions in their online system and the Carer’s Allowance is generated automatically – no form, no additional questions. Carer’s Allowance can also qualify your household for substantial council tax reductions (not in Scotland), and much more besides, such as a disabled parking badge (in Wales you have to have the Enhanced component to qualify for that… you see, I did say it’s complicated!).
This is a big task and it’s not helped by the fact the different parts of the UK, even different counties within England, have different qualifying rules for all of the extra bits of help that PIP can lead to. But if you can face it head on, with help, then it opens the door to so much more that you need and are entitled to as a UK citizen.
If you can face the process I would strongly recommend claiming it. There are organisations that will help you prepare for this – though you may have to be patient for their support as the need is much greater than the provision. If you have a friend or relative that can help you with it, it would really help too – as it helps to share the burden, and it means someone can sit with you when you’re going through the application process, and advocate for you if you find you can’t express yourself fully when you’re being interviewed (in person or by phone), having made your application.
I could write for a long time on the subject but there are better, less biased, sources out there on the internet. So, I shall list some below that I hope will help:
This is the government website about PIP. You will find the link to apply here too.
For those living in Scotland, this is the link to the government website about Adult Disability Payment, including the link to apply for it.
Citizens Advice gives a lot of information about the PIP application on their website, including a YouTube video. I would recommend making an appointment to speak to a Citizens Advice advisor, as neurodivergent needs are not as clearcut as many other disabilities and they will be able to give you more tailored support, that truly recognises your difficulties. This is particularly important because communication is often one of the most difficult aspects for us and we can struggle to put across our needs effectively when under pressure. You will find a link in that page that will help you find your nearest Citizens Advice Centre.
The disabilities charity, Scope, has a really helpful page on their site, with plenty of information about PIP, how to apply, the eligibility criteria, it shows examples of how PIP is tested, and the questions that they ask. It also gives information on what to do when your reassessment comes round, if you are successful.