The government’s abolition of the disability living allowance (DLA) and its replacement with personal independence payments (PIP) means that people with disabilities – many of whom had been told their support would be for life – are being forced through a process of reassessment. But what’s the impact of this?
It’s a topic that Frances Ryan covered in her Hardworking Britain series last week. She wrote: “The retesting of PIP claims means, in practice, blind people, paraplegics and those with Down’s syndrome will be put through reassessment: forced to provide information about their disability that the government already has and cannot possibly have changed.”
We asked for your experiences of this. Here, five people share their stories.
‘It’s hard to understand why we have all had to go through this’ – Angelene Wright, 66, from Lincolnshire
I’m a carer for my 64-year-old husband who is in the final stages of multiple sclerosis.
My husband received a lifetime DLA award about 15 years ago. He is now unable to walk and we are dependent on our home carers for most of his personal care. I have lasting power of attorney as he can no longer sign his name. He can just about feed himself with special cutlery, as long as the food is soft and cut up small. He is totally dependent on others for all his needs.
We went through the reassessment process earlier this summer. With the help of our social worker and rehabilitation consultant, my husband was granted the new benefit without having to go through a face-to-face interview – only a phone call for extra details from the assessor was required.
The whole thing was very stressful. The initial letter, announcing that his DLA was to stop and telling us to phone the number within 14 days or face losing the benefit, was scary. I have to say that all of the people I had to speak to were extremely courteous and helpful. The 40-page form was a pain to contend with – I’m a retired teacher but it was formidable. Also my original registration of lasting power of attorney was required and was not returned – thankfully, I had it scanned. All they actually needed was our registration number.
When you have been given a lifetime award it’s hard to understand why we have all had to go through this. If a person is incapacitated to the level that a lifetime award was thought appropriate, they are not going to get better. They clearly designed it to try to catch people out and it seems to have caught a lot of the wrong people.
‘Irreversible brain damage is irreversible. I don’t understand why I am being reassessed’ – Anonymous, 31, from Glasgow
I have cerebral palsy, a visual impairment, dyspraxia and epilepsy. I’ve been on disability living allowance (high mobility and medium care), receiving around £450 a month, since I was 16. That’s all my adult life. I thought DLA would always be there and am profoundly shocked that it’s now changed and I am due to be reassessed soon.
I am so scared of what this may bring that it keeps me awake at night. When my DLA money comes in each month, I am very relieved. I have had periods when it was my only source of income and I don’t know how I will manage if it goes away.
Reassessment of lifelong conditions makes no sense to me. It is a waste of money and energy and it is cruel.
I am profoundly shocked about being reassessed. I do not understand why this has to happen – cerebral palsy and epilepsy do not go away. They do not change in any way. My balance is as bad now as it was when I was 16 (in fact my joints are probably in a slightly worse condition). I still don’t have a lower field of vision. I’m still having fits. Irreversible brain damage is irreversible. Reassessment of lifelong conditions makes no sense to me. It is a waste of money and energy, and it is cruel. I know I will never get better. I’ve accepted that and am getting on with my life. I feel ashamed and helpless in a way I never did before.
‘The whole process was costly and demeaning’ – Anonymous, 38, from Staffordshire
I am writing on behalf of my daughter who has a personality disorder and complex mental health needs classed as severe and enduring. She had been given a lifetime award, but last year we had to submit a claim for PIP, which meant reassessment. It was incredibly painful for her to go through this process again, and we submitted medical evidence for every question on the form.
The enhanced living component was awarded, but the standard mobility component was taken away on the grounds that she could walk 10 metres unaided. However, eventually we challenged this and won. We were very relieved and pleased, but the whole process was costly and demeaning. What’s more, no one has actually met with my daughter and every decision has been made on paper. It feels like she has no voice. I am the one who has to pick up the pieces when ignorant bureaucrats treat a fragile, seriously ill person so badly.
‘The arbitrary nature of the system infuriates me’ – Charlie Saben Fox, 61, from Edinburgh
My son has autism, global learning difficulties and epilepsy.
How much help you get really is a lottery and many people seem to be losing out.
He has been in receipt of DLA since he was two and was awarded an indefinite award at 16. He was “invited” to migrate to PIP, taking a paper-based assessment. After this he was awarded enhanced daily living and mobility components, but only for five years. I couldn’t understand the length of award as the assessor stated his condition might only change marginally. I called the Department for Work and Pensions to ask for a mandatory reconsideration and they weren’t very helpful. First they told me I couldn’t challenge the five-year award, but eventually I got it extended to 10 years.
I’m pretty strong-minded and wasn’t scared of challenging it, but a lot of people might have been bullied into submission. I’m still angry when I think about it. The arbitrary nature of the system infuriates me most. How much help you get really is a lottery and many people seem to be losing out.
‘By the time I got into the room I was a nervous wreck’ – Catherine Hart, 36, from Sheffield
I have serious mental health problems and my DLA was not a lifetime award, but a long-term one – after being assessed every three years it was extended to every 10 years. That changed under PIP. I had to fill in a very long form within three weeks, but it took them several months to tell me if I had been awarded PIP. This severely affected my mental health.
I was starting to get myself back on track when I was told I had to go in for a face-to-face assessment. My care coordinator was off work ill so I had a stranger from mental health services take me, because I don’t do well getting out of the house on my own.
By the time I got into the room I was a nervous wreck. The person I saw was very sympathetic, understanding and patient. He didn’t rush me for answers when I was struggling to speak, was delicate with his questions about my suicide attempts. He even told me he was sorry to be putting me through this.
It took less than two weeks for the letter telling me that nothing had changed in my award. The letter itself was entitled “Changes to your personal independence payment”, which scared me, until I read further and found out that it would be the same.
All the people I had contact with throughout the PIP process were kind and sympathetic. The problem I had was with the paperwork – there was a lot of it at all stages. To truly reflect how bad a mental illness can be, you have to talk about your darkest times, and this process takes you right back there.
"I feel ashamed in a way I never did before": your stories of PIP assessment | Sarah Marsh
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