I am a care worker supporting disabled people to live independently within my community. Many of my service users claim disability benefit, and I am concerned that the new assessments for Personal Independence Payment (PIP), which has replaced Disability Living Allowance (DLA), will not only cause them unnecessary stress and anxiety but threaten the freedom and standard of living they are used to having - and have a right to have.
The assessment for PIP requires claimants to attend face-to-face consultations, unless they’re housebound or unable to travel for medical reasons. Dave* has multiple sclerosis. Although he is not technically “housebound” it would be an enormous task for him to attend a consultation because he is wheelchair bound and doesn’t have easy access to disabled-friendly transport. It would be mentally overwhelming too, because 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. The prospect would cause him unnecessary distress and it would take days to recover from the mental and physical upheaval of having been. But practical obstacles and vulnerable states of mind do not count as excuses to avoid these consultations.
The new assessments also prioritise testimonies from GPs and specialists rather than those from families, carers and social workers. Whilst a doctor’s input is invaluable in proving what disability a claimant has, they are no more qualified to comment on how that disability affects the claimant on a daily basis outside of the doctor’s surgery or hospital.
Jane* has Parkinson’s disease and a rare condition that causes jaw spasms and excessive dribbling. She sees a specialist twice a year who is “managing” her well - she receives treatment, of varying success rates, for her medical conditions. So her doctor could feasibly suggest that Jane copes alright at home. If this testimony is the extent of Jane’s supporting evidence then her assessment will be inaccurate and overlook the practical tasks she cannot complete and the social interactions she cannot have. Jane’s doctor doesn’t know she spends her days hunched over a bin of wet tissues, often crying, with a constant stream of saliva pouring from her mouth. Nor should they be expected to, because they do not live and work alongside her. Since PIP is supposed to improve disabled people’s “ability to participate in society”, assessors should surely be concerned with living socially as opposed to surviving medically. As it stands, the new assessment and its preoccupation with medical evidence will fail people like Jane.
Claimants will be regularly reassessed for PIP once they receive it to ensure their circumstances have not changed. Bizarrely this will even apply to permanently disabled people like Tony*, a paralysed stroke victim, and Sue* who has Multiple System Atrophy (MSA). Their condition will never improve but they will nonetheless have to endure routine reassessments causing unnecessary stress and disruption – lest they forget that it is not their right to have this support; it is their short term privilege which can be taken away at any time.
Indeed it will be taken away. People who have leased ‘motorbility’ cars using their DLA risk losing them because the ‘walking distance’ that decides your eligibility has been decreased from fifty metres to twenty. Lucy* has cerebral palsy but whilst she cannot walk fifty metres, she can struggle to walk twenty. She lives in a remote village, miles from amenities and relies on her car. The infrequent and unreliable bus service clashes with her shifts as a ‘blood bikes’ co-ordinator (a voluntary courier service for the NHS) and besides, she suffers terribly with travel sickness. If her car is taken, Lucy’s independence will be taken as well.
Lucy said to me last week “we talk about vulnerable disabled people, but my disability doesn’t make me vulnerable – this government does!” As PIP sweeps across the country, I fear she is right. My service users will face a lifetime of exhausting assessments or have the disability benefit safety net pulled from underneath them altogether, simply because our government has decided to move the goal posts closer together in a bid to reducing welfare spending.
We must raise awareness about the impact these PIP assessments will have on disabled people. The MS society has campaigned successfully for PIP assessors to allow for the fluctuating nature of multiple sclerosis, something they previously failed to consider. Parkinson’s UK has campaigned to postpone reassessments for current DLA claimants until October 2015, to allow time for an independent review on how PIP works for new claimants. More of us need to follow suit, and I for one wouldn’t be doing my job properly as a care worker if I didn’t speak out against these PIP assessments, and the harm they are likely to bring my service users.
*Some names have been altered to protect the identities of affected individuals.
A response from the Minister for Disabled People, Esther McVey, to this piece is published here