by Erin Mee
I work as a carer in the east of England, providing support for disabled people living independently in their own homes.
Many of my service users have been claiming disability living allowance and are due to be affected by the recent benefit changes which, as of April, saw disability living allowance (DLA) replaced with personal independence payment (PIP).
The change is estimated to leave 160,000 disabled people with less support and 70,000 people, who previously qualified for DLA, with no support.
Sadly it seems that the changes to disability benefit will not give, and do not intend to give, more effective or fairer support to those who need it.
Instead, it seems people like my service users will be burdened with a lifetime of exhausting assessments and be dealt with in a distrustful manner that relentlessly demands they "prove" their disability exists.
This is the fate awaiting those who are "fortunate" enough to still qualify. Scarier still is the thought that many of my service users would have the disability benefit safety net pulled from underneath them altogether, simply because our government has decided to move the goal posts closer a bid to reducing welfare spending.
Who is carrying out these PIP assessments and why were they selected to do the job?
A number of different contractors are involved, most notably Atos, which has the contract to do the PIP assessments for many areas across the country, although Capita Business Services will be providing this service in my area.
Capita is the government's outsourcing firm of choice, a leading provider of "business process management."
The DWP says it is the appropriate provider for PIP assessments because it demonstrates "strong evidence of working with partner organisations such as health groups and the voluntary sector."
There is also strong evidence that Capita tends to treat those receiving its services very badly.
Its poor management of housing benefits in Lambeth led to hundreds of complaints, and the provider was publicly shamed after it sent text messages to thousands of migrants incorrectly telling them that they were in the country illegally and that they had to leave.
This service provider does not have a good track record when it comes to looking after people.
Looking after finance seems more its forte. The Guardian described Capita as having "accrued unrivalled expertise in generating a rich seam of profit for its shareholders, cost saving and efficiency gains for the taxpayer."
This is the real reason Capita has been chosen to assess those claiming PIP. Capita ultimately values financial cost above human cost and thus has no qualms about being ruthless in its primary objective to cut welfare spending.
How will disabled people be assessed?
The new assessment process invites disabled people to attend face-to-face consultations with a "health professional" run by Capita, but this attempt to provide a more intimate approach to disability assessments is a token gesture.
Many people will not attend these face-to-face consultations because there are practical and emotional barriers which will prevent them.
I visit "Dave" who is 53 and has multiple sclerosis.
It is likely that someone with his level of disability would be asked to attend a consultation because there are no serious medical reasons for him to avoid travel and he is not technically "housebound" despite currently having to remain in bed for a long stint while a pressure sore heals.
It wouldn't be comfortable, but we could hoist him into his wheelchair if necessary.
He and his wife Shelly do not have a car because Shelly doesn't drive.
So they'd have to book a disabled taxi to the consultation and back, and while the cost of this could be reimbursed, I know Shelly would have trouble fronting such a large sum of cash.
Where they live there are just two disabled taxis, both of which are unavailable to book between 8am and 9am or 3pm and 5pm because they do the school run.
So Dave is already limited in what time slots he could make.
Since they do not have a car to leave things in, they would have to carry around bulky incontinence pads, baby wipes, catheter bags and nappy bags because Dave will certainly require these if the trip out is longer than two hours.
If Dave was invited to a consultation he would fret about all these things, causing him unnecessary anxiety.
Beneath the bravado of a bloke who used to run a building site, Dave, like many other disabled people, has suffered a huge loss of confidence.
He fears embarrassment, he fears being patronised and he fears people staring as his well-meaning wife fusses around him.
But the stressfulness of the day and Dave's vulnerable state of mind do not count as valid excuses not to attend, and failure to attend would reflect negatively on Dave because Capita could show he had been given the "opportunity."
What do I think Dave would do? He'd probably tear up the letter and his pride would make him say something foolish like "time would be better spent down the pub" rather than admit to people why he couldn't face going.
He and Shelly would have an argument, Dave's MS would be aggravated by the stress, and by the time I show up for my 5pm call the atmosphere would be thick with frustration and bitterness.
Situations like Dave's will be happening all over the country and this is exactly why the face-to-face consultation component to the PIP assessments will be ineffective and problematic for many disabled people.
What counts as "housebound" and what counts as "mobile" is not as black and white as the DWP would like. It risks ignoring the many shades of grey in between and this will undoubtedly affect how people like Dave will be assessed.
Once you qualify for PIP do you keep it?
The DWP says all claimants will need to be reassessed after a period of time.
Even claimants with permanent or degenerative disabilities will not receive life awards.
The majority of disabled people will be granted shorter awards - between one and 10 years - and will be frequently checked that they're "deserving" of the temporary benefits they receive.
The impact of this will ensure that people like my service users will feel perpetually guilty about having a disability that the welfare state is paying for.
In case they get carried away with thinking they have any sort of independence, regular reassessments are there to remind claimants that it is not their right to have this support, it is their short-term privilege and it can be taken away at any time.
Reassessments also suggest that claimants cannot be trusted to report changes to their disabilities themselves.
In my experience, people are very honest and claiming is something my service users loathe doing.
Our country saves £11.77 billion on unclaimed benefits because, contrary to what right-wing tabloids may tell you, people do not like asking for help and they fear the stigma that comes attached to benefit claimants.
Many of my service users have paid for pieces of specialist equipment themselves when they could have easily had an occupational therapist order them for free.
These are the people that are likely to be taken advantage of - people who will accept a lower rate of disability support because they are unsure of what they're entitled to and don't want to be greedy.
Has Capita been asked to meet targets regarding the number of claimants?
In other words, is it a condition of the contract to carry out assessments with the aim of reducing the number of claimants so welfare spending in this area falls?
I remind you of Capita's complimentary write-up in the Guardian - "unrivalled expertise in cost saving and efficiency gains for the taxpayer."
The Department of Work and Pensions says: "No, to have such targets in place would undermine the principle at the heart of this benefit."
Well it's doing a good job of gutting out the heart of this benefit, and the likes of my service users will pay the price with their independence and well-being.
I'm not sure what principle there is left to undermine.
Who will be used for supporting evidence?
The DWP states that the assessment for PIP will place greater emphasis on the testimony of GPs, consultants and specialist nurses to determine exactly how disabled someone is deemed to be.
Nick Barry, general manager of the PIP contract for Atos, said he'll be asking for the "best person" to support a claimant - not "people," just one person.
If claimants only get one choice, then understandably they would use their doctor or specialist because they're the ones who can prove the disability exists.
So there is little room for a third party to comment on the quality of social life the claimant hopes to gain with disability benefit.
PIP is supposed to help with living as an equal member of society, not surviving medically.
So why should applicant evidence that is based on medical knowledge be valued above the testimonies of family, social workers and carers?
The opinion of doctors is important, but they would be unable to suggest how a disabled person's personal spending budget should or should not be limited to enable them to "participate in society."
"Jane" is 59 and has Parkinson's disease. She also suffers a permanent side effect from a poorly researched anti-depressant drug she took years ago which causes her jaw to lock and spasm uncontrollably.
The medication she takes to calm the spasms down causes her to produce excessive saliva, so she dribbles from the moment she wakes up to the moment she sleeps.
Given her complex combination of medical conditions, she sees a lot of doctors and specialists who offer treatments, such as six-monthly injections to dry out her salivary glands, which in turn have their own negative effects - her mouth becomes so dry that she cannot swallow food or talk and before too long the injections have worn off and she's dribbling again.
Doctors act as "problem-solvers." And as far as they are concerned Jane's problems have been solved as best they can be.
On paper she is being "managed." She has treatment for the Parkinson's, the jaw spasms and the dribbling.
Therefore it would be quite possible for a doctor to suggest that Jane probably copes all right at home.
If this doctor's testimony was prioritised then Jane's assessment for PIP would be inaccurate. It would neglect the practical tasks that she cannot complete and the social interactions she cannot have because of her disabilities.
Jane's doctor does not know she spends every hour of every day hunched over in a chair crying with a bin full of wet tissues and a constant stream of saliva coming from her mouth staining all of her clothes.
They have not seen me spend over an hour trying to feed Jane a bowl of porridge, most of which chokes her as she swallows it or falls onto her baby bib because her jaw spasms prevent her from closing her mouth around the spoon.
I could tell an assessor a lot about Jane's "ability to participate in society" because I spend three hours with her every day, but Capita will not ask me.
PIP risks ignoring the people who interact socially with disabled people, who see them functioning both within the community and in the privacy of their own homes.
It is these testimonies, not just doctors, which need to be made "greater use" of.
Morning Star
