The Problem With PIP

 

Personal Independence Payment, or PIP, is a working-age benefit which individuals with recognised disabilities can apply for to support them with meeting the additional costs which those disabilities can incur in daily life, and in accessing employment.

While PIP is "not means tested", this doesn't mean it's "just handed to anyone who says they're disabled" - non means-tested just means that an individual's income and savings are not considered when their application is being assessed.

This is often the first issue that comes up when PIP is being discussed in media, both mainstream and social - "non means-tested" is frequently thrown around media discussions very casually, allowing the assumption that "they're just handing it out to anyone!" rather than, in contrast to the unemployment and under-employment benefit that is Universal Credit, which brings income restrictions for those in part-time or gig-economy work, as well as restrictions on the amount of savings a recipient can have, that income and savings aren't considered as part of the PIP application. (currently savings have to be under £6,000 to qualify for Universal Credit - which isn't a lot of "runway" for recovering from the crisis that unemployment often is; income restrictions are currently tapered away by 55p for every pound earned until a monthly income level is reached, with the tapers varying depending on household and personal circumstances - when Universal Credit payments can be as low as £400pcm, being essentially "taxed" at 55% for doing the right thing and taking work/pursuing self-employment where you can, even if it doesn't pay even close to the minimum wage, seems a bit off at a time when literal millionaires are frequently treating taxation as an optional, rather than the thing you do to support the society that enables you to achieve such astronomical success from your "hard work".)

The (deliberate) conflation of "non means-tested" with "just handed out to anyone who asks" is a systemic issue, one caused by and supported by the media, likely in cahoots with the government and the DWP (Department for Work and Pensions) themselves.

However, some claimants are also causing the "optics" problem of PIP.   As we've already identified, PIP is intended to assist disabled people in meeting the costs of managing life and employment with those disabilities.

Disabled workers, including those in self-employment, are able to apply for PIP, regardless of their income level.  Applying for PIP, however, doesn't mean you'll get it - I am legally blind, and also live with schizophrenia and chronic IBS.  The main costs obviously come from the sight loss, and include things like:
. Being medically banned from driving, and also being night-blind, meaning if I have to be somewhere after 4pm in the winter, or I have to get back from somewhere after 4pm, I'll need to take a taxi,  and that if I have to leave before 9.30am to get somewhere, I'll be paying full bus fares.  Sometimes, in order to safely and reliably be somewhere, my best option is to stay overnight.

. Initial purchase of, and ability to replace, things like my long white cane, the polarised glasses I need to counter photophobia (inability to see in bright light conditions), which is an aspect of two of the four separate sight loss conditions I've been diagnosed with.

. Immediately and reliably being able to replace my laptop - I can't really use my smartphone easily for many of the things that smartphones typically exist for, and rely totally on my laptop to manage my self-employed work, as well as jobsearching, and applying for jobs; I can't "just use a computer at the library" if my laptop gives up the ghost, because I need a larger-than-average screen in order to have any hope of being able to actually set up the accessibility elements I need - magnification, resolution, font size, contrast.

. Being able to afford the specific eyedrops I need, even when freelance work is not working for income generation.

. Being able to afford increased electricity bills; my sight loss means I need to have lights on literally all day, including during summer, in order to see sufficiently to manage work.

. Paying for specialist "routine" eye tests, and multiple pairs of high-prescription glasses - my sight loss means I'm beyond the remit of places like SpecSavers and Vision Express (eye tests done at "high street" opticians typically result in unnecessary referrals to my local hospital, despite those opticians being told I am already aware of the damage to my optic nerve, and extent of peripheral vision loss (currently, 95%...fun times out here..) that they're freaking out about.  The specialist opticians typically do not engage with the NHS, so that reduction of cost of both the intial eye test, and the glasses themselves, is gone.  Part of my sight loss is that my eyes can't track, and don't automatically adjust focus - this means I can't wear bifocals or varifocals, and I need different prescriptions for "just bopping around the place" and actually trying to get anything done. (I can't read, write, type, or even see pictures and videos, without glasses; I can walk around without glasses, but I can't read signposts, building numbers, or see light-coloured cars before they're about to hit me without a different prescription of glasses to those I use for managing work and hobbies.) Two of my four diagnosed sight loss conditions are in active degeneration, meaning that both of my prescriptions change very frequently.

While the disability which needs the most accommodation for work and life is my sight loss, the schizophrenia and IBS also come with their own costs, excluding prescription costs. These include:

. The various wholefoods and supplements I use to manage my schizophrenia, which I am currently managing naturopathically, with prescription back up when required (I need two different medications when I do need prescription support; even though these medications are routinely prescribed to be used in combination, they're charged separately; because the DWP no longer sends letters, there is always a chance I will have to pay for those prescriptions, because I have no "proof" that I'm receiving Universal Credit - this is just one of many systemic flaws in the government's rush to make everything digital-only. My naturopathic regime includes: L-Tyrosine supplements, walnuts, valerian tablets, nicotine pills, and an ultra-high-protein diet. (As you can imagine, affording ultra-high protein is very challenging in this economy.)

. Incontinence pants - my IBS unfortunately includes passive fecal incontinence, which, to be blunt, means my bowels can decide to have a clean-out without letting my brain know things are on the move; I don't get any sensation, and...yes, therefore do end up sh*tting myself without being aware of doing so.

. Activated charcoal supplements - these help keep my guts somewhat reliably in order, reducing the risk of an unpleasant accident.

. Wet wipes - for "clean up" (my bathroom isn't large enough to install a bidet - the door smacks the toilet as it is, and there's barely an inch between the toilet and the sink, and the sink and the tub, and, obviously, public toilets - which I very often need, even if I'm only out for short periods - do not include bidets in the UK.)

. Meeting the costs of needing to use more central heating and water - one of the triggers for my IBS is cold, which my body loves to interpret as "a fraction of a degree below 18 degrees centigrade", so, living in the UK, I frequently have to run the heating, while, obviously, I have to not just wash myself more frequently, but often have to do laundry outside of the regular loads that everyone has to afford the water and detergent for.  

. Affording therapy - I currently can't afford therapy, and am in the ridiculous limbo of not being distressed enough for intensive NHS support, but having "too complex" mental health to qualify for the generic Wellbeing Service support.  Also, my GP thinks hypnotherapy would be "highly beneficial", but that's not even provided by the NHS in my area anyway.  I do journal as a form of therapy, and have taught myself EMDR; both of these things help somewhat, but the involvement of an objective, uninvolved third party is definitely a significant benefit. (I received Early Intervention Therapy for three years between 2005-2008 following my first recognised psychotic break - that was on the NHS, and I got so, so lucky with the quality of the therapist I was referred to.)

These are all the costs of my disabilities, and, yes, disability aids are included in those costs.  
I don't qualify for PIP.
I've applied - three times, in fact. I've never even been progressed to assessment.  And yes, I do know "how to answer the PIP form questions" - I used to do that professionally, for clients in a previous job (which I lost because the organisation decided I "had to" provide group internet job search support, which I wasn't able to do because of my sight loss...they were a "Disability Confident" employer, too...the process of my leaving was...not mutually respectful, to say the very least), and those client applications were always successful.

My wife is also disabled - she has cerebral palsy, is partially sighted (she is slightly better sighted than I am in general, can use a regular laptop, and can read without glasses; her sight loss is caused by extreme prematurity, and is therefore stable, compared to mine), has chronic fatigue (ME), autism and ADHD, and OCD.

She has also been denied PIP - it doesn't matter how you respond to the questions on the PIP form; if you're lucky enough to make it to assessment, it all falls on "how does a complete stranger who is seeing you for literally 1hr feel about you?" - my wife uses a cane, and, without it, will be in significant pain if she has to walk for more than 20minutes; PIP assessors take the view that the cane is "primarily used for confidence" - their assessment for mobility involves "walk 500mtrs in a straight line in an uncluttered environment" - which is...not how getting to and managing work when you're medically banned from driving (as my wife is), so can't "just hop in the car" actually plays out.   

My wife relies on me prompting and reminding her daily about things like drinking enough, having food regularly, getting ready for appointments so that she's there on time, etc - we've always identified that on her PIP applications, along with the fact that she is unable to cut up meat, or safely lift a full saucepan of hot water - every. single PIP report has come back citing that she is "more than capable to manage routine daily living tasks" - even though social media will tell you that "needing prompts and reminders means you're not able to "independently manage daily living", and claims this will "definitely" qualify you for PIP "as long as you make it clear on your application." - Not so much, in reality.

The impact on both mine and my wife's mental health of the entire process of trying to get additional support is so extreme that neither of us have been able to face appealing our PIP rejections.

My wife isn't realistically able to even pursue self-employment - she can't "self-motivate", she rapidly reaches burnout even with something like online content creation, and, in case you haven't noticed, you have to spend money to make money. Social media no longer grows organically - unless you can afford to buy followers, unless you can afford top-tier tech, webhosting fees, paid promotion, you won't get anywhere unless you're very "lucky" (typically, "lucky" means "stereotypically attractive/extroverted"...) Her energy levels and "minimal pain days" are not predictable, so she can't even commit to volunteering, which is increasingly "agree to do a certain pattern of shifts that are the same every week.") She is currently trying to build up a business using spiritual and paranormal exploration to discuss real-world lifestyle concerns, but, again, this relies on having a lot of spare money to have a presence at Mind, Body, and Spirit events, where her approach is more widely accepted, as well as needing more money than we have to afford quality tech, and having to pay for public liability insurances to attend events.

Even though I have to be physically present to support my wife, I "don't provide sufficient hours of care" to qualify for Carer's Allowance (which isn't really worth claiming anyway, since it's not actually remotely reflective of the "35 hours of evidenced care" that is expected...)  This care responsibility, as well as my own disabilities, mean I can realistically only work freelance, and from home - not sure how I'll actually manage if Nigel Farage's Reform party win a future general election, since they are very opposed to the plebs working from home, and actively hate disabled people whose disabilities get in the way of them being financially self-sufficient.

All of this is a very long discourse on my original point: Outlining what it means for PIP to be intended to support the additional costs of disability.

No, it actually isn't intended to "ensure disabled people get to enjoy life" (it would be nice if there were a fund for that, but there isn't. People, especially Gen Z online, need to get over that reality...)

Does going on holiday, having pets (as distinct from recognised task-support animals), having houseplants, and being able to fully engage with any hobby you happen to have, help mental health and general wellbeing? Absolutely - but that's not "an additional cost of disability", because these things are true for most people, including non-disabled people.

Yes, "stim toys" can be useful for people with ADHD and autism - but, let's be real: these are very affordable at this point.  You can literally get them for £1 in a wide variety of places. The government actually shouldn't be paying for things you can realistically afford yourself with relative ease, even when that thing is necessary for managing a disabling condition.

It is an inconvenient truth that some chronically online disabled people have not been using PIP as it was intended - and that is very much the driving focus for significantly restricting it, and the desire at government level to "reform" it - both actions which, overwhelmingly, will result in people with genuine needs, who are focusing on the intended purpose of this aspect of welfare provision, being the ones who lose it, or are outright denied it - because we don't have people fighting our corners. We don't have loads of actively engaged followers on social media.  We don't have the emotional energy, extroversion, or sense of entitlement, to kick off and get stroppy when we're refused support. We can't afford to travel to national protests, or our disabilities actually make it impossible to engage even if we can get to the protests. We are often at greater physical risk if we p*ss people off, and it is very unsafe for us to come to our local MPs' attention as "someone vulnerable", especially at this point in the UK's timeline, when even some Labour MPs are very hostile to "people who don't contribute through employment" and "those burdening the economy through reliance on benefits." (This is ramped up even more for trans and visibly intersex disabled people...thanks, "Robert Galbraith"...)

The "additional costs of disability" are the things that are essential for directly managing, accommodating, and mitigating a high-impact disability.  The term does not refer to "things that make me, a disabled person, feel happier."

You do not need a walking pad under your desk. You can move your legs in the same motion with no equipment required. Everyone should be being allowed to get up and move around as they need - employers, letting people move as and when they need to in offices reduces absenteeism related to experiences of pain, and reduces both screen fatigue and stress...let people take a stroll round the office. Stop dragging your teams into back-to-back meetings.

Your holiday is not "part of managing disability" - I haven't been on holiday - no, not even a "staycation" (a term I personally hate, and consider irrelevant) - for about 8yrs.  If, as the proponents of "staycationing" believe, "a holiday" means "leaving the country you live in", I haven't been on holiday for over 20yrs.   That fact hasn't made any of my disabilities worse.  Do I enjoy getting away for an overnight when I can, or even having a daytrip somewhere? Absolutely - but it's not a cure for my schizophrenia. It doesn't improve my IBS. I can't suddenly see better.  Everyone enjoys time away from their day to day.  

I am going to be able to have "a holiday" (4 days at a hotel in a nearby coastal town) in May - that will be a nice break. I've been saving up for it.  It's not going to do jack for any of my disabilities.

Having pets actually does help me manage my schizophrenia; for me, paranoia and severe depression are core parts of the schizophrenia, and, if it weren't for my pets, I would probably be very much inclined to stay in bed, which, for me, is very much identified with "safety", even if I'm awake and actively working whilst in bed.  Having multiple living things with different needs means I get up at a sensible time, and stay up (because I have pets which need repeated engagement and interaction throughout the day, which prevents me falling into "get up, deal with pets, flee back to the safety of my bed/room", which is absolutely a necessary element of condition management.)  However, if I couldn't afford pets, I would probably be able to identify other ways to force myself to leave my bed during the day.

So much for "this isn't what PIP is for!" - what are some things it can legitimately be used for?

. Covering gaps between housing benefit and actual rent for accessible private rental properties. Particularly for wheelchair users, there isn't a lot of accessible housing in the UK. Not even among council/housing association affordable housing - where providers often restrict access to ground-floor and single-storey properties to the over 55s.  Social housing waiting lists are longer than NHS waiting lists, and social housing providers are extremely ableist, and frequently ignore the genuine housing needs that arise from disabilites, mental health conditions, and neurodiversities.  This forces many disabled people to rent in the private sector, where rents are so high that they are not fully covered by housing benefit; in my local area, for example, housing benefit payment is capped at £470pm - you won't even get a one-bed flat in immediate proximity to anti-social behaviour and drug dealing for that. (Those start at £550pm).  This is why so many private landlords won't offer tenancies to people on welfare - there's a significant risk that those individuals won't be able to afford the shortfall between the rent that's charged, and the amount that's covered by housing benefit. (The government needs to wake up to the reality that private landlords, and the rents they charge, are the main driving force behind the "spiralling cost of benefits.")

. Being able to afford to run a car, when this wouldn't otherwise be possible on an individual's income, OR being able to afford taxis when disabilities prevent an individual from being able to drive. This can include affording adaptions to vehicles to make it possible for people with physical disabilities to safely and comfortably drive.  Many disabilities make it impossible to reliably travel by public transport (bus drivers and train staff refusing to address able-bodied people, including parents with non-disabled children in buggies, taking up disabled spaces on buses and trains, either with their bodies, their pushchairs, or their luggage, is a massive impact on disabled peoples' freedom to get to and from work, to access social and therapeutic support, to get to medical appointments, etc when their disabilities prevent them driving...this shouldn't be a reality; if you choose to have a kid when you can't reliably afford to run a car, buy a foldable pushchair, or transport your baby in a parent-worn papoose. Teach your toddlers that the disabled seating area isn't for them. Drivers/conductors - don't just "ask people to move when a wheelchair gets on" - don't let able-bodied people sit in the disabled bays to begin with.  

I am disabled; but my disabilities don't prevent me walking along a bus or train to a regular seat; I will only sit in the disabled area if I'm on a bus travelling a route I'm unfamiliar with, because I need to be able to see landmarks/place signs, to know when to get off, and to do this, I need to have a clear line of sight to the windscreen (it's not completely failproof, but it definitely helps.)  I generally leave the disabled bays on public transport for wheelchair users, and those who aren't using wheelchairs, but are very much mobility impaired.  If I can do it, you're "but I'm tired, and my kids are crazing me!" arse can f-k off out of the tiny amount of space that isn't for you.

. Affording additional utility costs - many disabilities are made worse by cold, meaning heating bills are higher. Many require air conditioning, which isn't standard in UK homes.

. Paying for human support - for example, employing a cleaner if your disabilities make it difficult to physically manage routine housework, or if mental health conditions like OCD or depression cause it to feel too overwhelming to even get started,  paying for support with "life admin" - ensuring that you can rely on having help with going through paperwork, without worrying about how you'll manage if you get tumbleweed when you "ask your friends to give you a hand", affording relevant therapy, paying for someone to do DIY tasks you're not physically able to do, paying a gardener when your disabilities mean you can't manage the garden yourself, etc.

. Affording mobility aids and helpful supplements - the NHS doesn't actually provide much, even when it recommends it. I've recently been told that I'd "really benefit" from a portable digital magnifier, which would be more accessible for me than the magnifying tool on my smartphone - at £1,500, however, I'll continue fumbling with the iPhone.  I recognise how much something like the Orcam Reader would help - not got a hope of affording that.

This can include walkers/rollators, wheelchairs, and compression wear - things that abled people often assume "the NHS gives people."

. Affording a gym membership - this may at first seem like a luxury, but for many physical disabilities, access to the supervision, support, and range of equipment that gyms offer are essential for managing an effective physiotherapy regime. (Let's remember, gyms were orginally for disabled people in the UK...yet another space abled people "discovered", and shoved the intended demographic out of...)

. Adapting your home to accommodate your disability - local authority support for disability adaptions is slow, cumbersome, and frequently denied as "unnecessary."  As I've already mentioned, fully accessible housing is...not really a thing in the UK, so most disabled people have to just bring in aids and adaptations to existing housing which isn't really convenient for them to actually live in.

It is exhausting facing very real life stresses, having to "just accept there are things I can't participate in", all of which would be improved by having access to a little more money, whilst watching some mopey neurodivergent stay-at-home yap about the "little treats" they've bought this week with their PIP, or trilling about the hauls they're planning "because I've just found out I'm getting backdated PIP, yay!"

In my ideal world, the government would just give every adult £2k a month in Universal Basic Income, so we can all have a bit of a nicer life, the economy can be boosted, because people can afford to spend on "pointless crap that happens to make me happy", more people can afford to take the risk of starting businesses, potentially reducing the welfare bill, and people can afford to deal with a lot of health issues themselves, using over-the-counter medications and private provision, thus reducing pressure on the NHS...but that's pretty certain to never actually happen, because too many very comfortably off people go into screaming hysteria at the idea of other people getting to live life on a slightly easier setting.

In the 20-teens, we had a lot of reactions to expressions of concern about whether everyone who was claiming welfare assistance actually needed it, or was using it for it's intended purpose that ran along "durrrr...it's not pie; more for other people doesn't result in less for you!" - but, as we are now seeing, that's actually not the case; the more people who get welfare support, the more focused the government becomes about restricting it, and the more common it becomes that people with very clear and obvious high-impact disabilities are denied financial support, while people with less apparent needs seem to get everything they ask for at the first time of asking.  The sheer volume of people claiming welfare support is directly being cited by the government as a reason to "review" and "reform" the entire benefits system -which is going to result in those who need the support most being at greatest risk of being denied it; increasingly, this is because high-impact disabilities don't look the way popular social media creators present them.  PIP assessors also refuse to accept lived experience insight into the direct impacts of disabilities, instead "referring to clinical guidance on condition impacts" - which sounds fine, until you realise that the NHS is paid by the government, and is the therefore heavily coerced to put a positive spin on "what people with XYZ condition can achieve" (with no commentary on the support and acceptance necessary of even having a hope of achieving any of the claims the NHS makes for their conditions...), and that clinicians are...also not great at actually listening to disabled people about the impacts of disabilities.  In general, clinicians dismiss anything that doesn't show up on scans - that's pain, fatigue, brain fog, mental distress - it's also things as objectively and indisputably real as how much someone with my sight loss conditions is able to see, how confidently we can navigate in different environments, the impact of extensive screen use...  As you can see, that's...a large chunk of relevant insight that just...doesn't make it into the literature that PIP assessors have.

My wife did make it to one assessment appointment for PIP (but was refused PIP anyway); she has a complex musculoskeletal condition, and moderate impact neurodivergence; she was assessed by an occupational therapist.

Whenever I've been mandated to see a "disability employment specialist" recently, they've typically been an able-bodied person whose experience of disability has previously been in the  residential care sector.  I did once get a physiotherapist. Not really people with much awarness of the the impacts of sight loss and serious psychiatric illness.

This year, I've made the decision to stop engaging with healthcare professionals.

This is for two reasons; primarily, concerns about the involvement of US company Palantir in the UK NHS.  My wife and I are marginalised in ways other than our disabilities and health issues, and I'm therefore very much not okay with highly sensitive information being anywhere near the current manifestation of American government.

Another reason is the increasing risk of dealing with clinicians whose primary source of any level of insight is generative AI, including people who relied heavily on ChatGPT et al to even pass required qualifications.  Slop isn't just annoying; sometimes, it's outright dangerous.

I no longer feel safe being in medical environments, and I no longer have trust in the competence and knowledge of clinicians.  So, at this point on the timeline, it's a case of "if I die, I die.  If it gets worse but not fatal, I'll figure it out."

Given the issues of people increasingly feeling genuinely "entitled" to welfare support like PIP as "something to make me happier as a disabled person!", rather than seeing welfare support as something tied to direct, measurable support elements, what would compassionate PIP reform look like?

. Dismantling Access to Work, and simply paying the annual amount Access to Work can facilitate for applicants directly to claimants, with a requirement for monthly receipts and commentary to be submitted for what that money was spent on. Access to Work is not fit for purpose, and hasn't been for a while. (Again, the debatable validity of people with autism and ADHD increasingly seeing Access to Work as being there for "nice to haves", rather than "actually required to engage with employment" is contributing to this breakdown of what has been a literal lifeline system, and one which is core to the aggressive focus on "getting disabled people off benefits and into work!")  It is underpromoted, heavily gatekept, and, from direct experience, and absolute f-king nightmare to engage with the application process for.

PIP, likewise, is a horror show when you're a disabled person trying to apply for it.

These challenges create a slow, log-jammed process, which is expensive to run and maintain. Simply requesting medical evidence of diagnosed disability, handing over the cash, and having a scheduled monthly receipts review appointment that can be conducted remotely would be cheaper for the DWP to administer, as well as more accessible for claimants.

. Engaging with lived experience. This should be primarily focused on people with diagnosed disabilities, but also bring in people who have genuine reasons to believe they may have a particular disability or health condition, and are engaging with the process of seeking formal support and condition management.  This gives a far wider awareness of the variety of impacts different disabilities and chronic health conditions experience, and the very real systemic barriers they create.

. Putting the onus on "getting disabled people into work" on employers and the DWP, rather than on disabled people. Compel employers to justify why they rejected an application from a disabled or chronically ill person. Establish work from home as a protected access accommodation, with the default being to say "yes".  Use DWP resources and funds to support people whose health conditions mean they can't manage "regular" employment to achieve genuinely stable, reliable, successful self-employment, rather than"assuming you're making minimum wage after a year, regardless of the evidence, whilst expecting you to meet all the costs of setting up in self-employment on the same pittance we give to the guy who peers at Indeed for an hour a day."

The system needs to be working, reliably, smoothly, and for everyone, before you can start harassing the people who have to engage with those systems in order to survive.

The Productive Pessimist can advise on disability, chronic illness, and mental health in relation to employment and entrepreneurship: Drop us an email at theproductivepessimist@yahoo.com to book support with us.