Survival of the fittest? Disability benefits in practice.

Personal Independence Payments were introduced back in April 2013 as a key element of the Welfare Reform Act 2012 alongside other benefit changes including the introduction of the controversial Universal Credit. Also known as ‘PIP’, the benefit replaced Disability Living Allowance (DLA) for people aged between 16 and 65 or pensionable age because, according to the Government at the time, ‘there was confusion about the purpose of DLA, it was complex to claim and there was no systematic way of checking that awards remain correct’.

By January 2020 the DWP reported that just over 2.5m people had been awarded PIP, almost 50% of claims made to that point.

Supporting the effect, not the cause

When it was being introduced as an antidote to the prevailing confusion associated with legacy disability benefits, understandably Disability focused charities supported the change. They expressed satisfaction that PIP was being described as “help towards some of the extra costs because of a long-term ill-health condition or disability. It’s based on how a person’s condition affects them, not the condition they have. It’s designed to be a more sustainable benefit and make sure support continues to reach those who face the greatest challenges to taking part in everyday life”. So essentially it would support the effect, not the cause of the disability, which in itself was a positive step forward.

So far so good.

So, one of the founding principles that were set out for the assessment of PIP claims was that claimants wouldn’t need a diagnosis (stands to reason if the benefit was geared to supporting the effect, not the cause). The application process would also be fairer as assessors in the claimant journey would really get to grips with the individual needs of the claimant, looking beyond the disability itself and determining the effect it was having on a person’s life – their daily living needs and mobility needs.

Again, all good. In theory.

Front-line Social Welfare workers were initially positive about the potential for PIP to make a real difference, particularly in their knowledge that often physical and mental health conditions go hand in hand, something that wasn’t embedded in the benefit’s earlier manifestation as DLA. A shift away from listing medications and treatments to a holistic understanding of a person’s current life circumstances would make a huge difference to being able to support people living with a disability in a more effective and person-centred way; the biggest indicator of this being that it wasn’t means tested – whether you worked or not would no longer be relevant to the assessment.

So how does the theory play out in practice?

The PIP claims process is challenging. Here are 5 reasons why we think that’s the case:

1. Handling a PIP claim requires a high level of responsiveness (robust deadlines for making claims, return of form, providing evidence) which doesn’t necessarily come easy to people at the best of times, but if you put yourself in the shoes of someone facing significant life challenges, this can be a step too far.

2. Stage two of the process requires the completion of a 33 page form which is sent to the claimant’s home address. That takes some mettle to tackle. Let’s imagine you have experienced a life changing illness and you are claiming PIP to help you to adjust. 33 pages. Not surprisingly people delay (beyond the deadline) or don’t bother at all.

3. It’s not just the length of the form that’s daunting. It’s also the information claimants need to provide in the form about how their condition affects them. It has to be said that the principle of evaluating the effect not the cause is embedded into the assessment, however if you are living with a disability and have necessarily made adjustments to do so, it’s extremely difficult to be able to articulate – over 33 pages – what that really means in practice. It is not unreasonable to need to assess these factors, but the reality is that to do it properly (in context of the complex PIP descriptors set out as the benchmark for determining the effect of a disability, the claimant really needs to be supported by an experienced third party to have any chance of presenting a true picture.

4. Albeit the principles of effect, not cause, are a central theme, there is no question that this needs to be in the form of medical evidence – the claimant’s own view of the world doesn’t hold much weight when it comes to the impact the disability is having on their life. Getting this evidence (within the deadlines) can be challenging in itself.

5. The final stage of the PIP claims process is an assessment, usually at an assessment centre (although this can be adjusted in advance if this is going to be a trauma for the person involved). The assessor may not specialise in their particular disability, and although the assessments are ‘person-centred’, in that they are about the person, they are also process driven, so attending in isolation is not the best option. Ensuring that the claimant stays calm, thinks through their responses and doesn’t forget essential information doesn’t come easy depending on the disability being faced, so being accompanied really is highly recommended to avoid a legitimate claim being passed over because of their ‘performance on the day’.

The Multiple Sclerosis Society of Great Britain produced a report about its members experiences of the test in September 2015. 1,780 participated. 42% of those who had a face-to-face assessment said the hidden symptoms of the condition had not been taken into account. More than a third said face-to-face assessments had caused their condition to relapse or deteriorate.

Points mean … PIP

So I think we can acknowledge that the PIP assessment process is a long way from a blunt instrument – it’s a multi-faceted assessment that’s then evaluated by a DWP case manager who awards points based on the evidence provided. Points determine whether a claimant receives a benefit, and whether the award is standard or enhanced.

It feels a bit like when you know a PR company has written an application for a company that wins first place in a competition – the rest had no hope because they didn’t have the right person on side articulating why they should win the prize. It’s a shameful reality that this is how PIP assessments work. We would never ever support someone claiming PIP if they didn’t genuinely qualify for the benefit – that’s just plain dishonest. However if the system is geared up to support the survival of the fittest we have to intervene.

Our call to Action

  • People need to be actively, overtly offered support before they even make their first call to DWP;
  • The system needs to be fit to support PIP claimants at every stage, and the people providing the support need to genuinely understand how to empower claimants to convey the information that will support their claim;
  • We need to be ready to support with appeals (over 75% are reported to be successful which tells a tale in itself), and able to do better than taking sometimes more than a year to get what people are rightfully entitled to in a humane social welfare system.

As it stands the PIP claims process does seem to be geared to the survival of the fittest, and the harsh reality is that some claimants simply don’t survive.

Jayne Graham MBE (Director) and Adam Matthews (Social Welfare Instructor)

If you would like to learn more about PIP claims check out our series of short videos here, and if you’d like to learn more about how to help your own clients to improve their chances of a making a successful PIP claim please get in touch today.