As the process of migrating disabled people from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) continues at its own pace, Andy Rickell gives his personal account of the labyrinthine process.
Eventually, it arrived. The letterbox flap rattled and a plain brown envelope with a return DWP address dropped to the mat. I knew it would come and now here it was – an invitation to apply for PIP (Personal Independence Payment) as a current DLA (Disability Living Allowance) claimant.
This was the state challenging the most powerful means of providing social security to the most “needy” one-third of disabled people below retirement age, the cash benefit to help meet my extra costs of disability. The security of our DLA money is now in potential jeopardy, in the name of the state which has decided that it would be paying too much in DLA if it did not create a cheaper alternative.
Disability Living Allowance
DLA was introduced in 1992 to provide a regular tax-free non-means tested cash payment to contribute towards the extra costs of disability. In essence, it was a brilliant response to fill a discriminatory gap in the social security system. It was and still is very valued by disabled people. It has one of the lowest rates of benefit fraud amongst all benefits – less than one half of one percent – yeah, even fraudsters don’t want to be associated with disability.
DLA did have some weaknesses. I sat on Disability Appeal Tribunals for the first eight years of DLA. The legal rules were open to interpretation, leading to people in identical circumstances potentially getting different amounts. The admin of the system could be tricky too – the lack of records of previous claim forms meant that on a re-claim by a disabled person whose circumstances had not changed, they might have to go to appeal to get their existing entitlement reinstated. But the availability of lifetime awards to people whose situation would never improve offered real long-term security, and invaluable schemes like Motability made intelligent use of the mobility component. But the decision to introduce PIP was absolutely first and foremost about saving money.
Even though as a Tribunal member I knew the rules about DLA better than most people, it still took me 8 years before I realised I qualified because I believed that DLA was always only intended for disabled people facing the greatest costs, and I had not seen myself coming into that minority. I eventually claimed, in part through my involvement in the disabled people’s movement where we invited everyone to claim their full entitlement of state support to maximise independent living. The DLA has been useful, but has always been used by me to pay towards costs that stem from disability, although it is right that disabled people have absolute choice over what it is spent on, as this serves the interests of both disabled people and the state.
The Government wanted to set up an expert advisory group looking at the PIP assessment and they wanted representation from disabled people on the group. Rowen Jade, the Chair of Equality 2025, was asked to sit on the group. Sadly it was at this point she became terminally ill and I was asked to replace her from Equality 2025. So I became one of about 20 advisors on the group, giving advice to the civil servants who were themselves advising the minister.
The rules of confidentiality prohibit me from publicising the discussions, but I believe I can make some comments based on what is already in the public domain.
DLA to PIP
I am very disappointed that, given that a decision was made to replace DLA, essentially what we have is the same care and mobility elements, just with different criteria for the assessment, some of which are not so bad and some of which are deliberately stricter. Probably PIP’s worst feature is not necessarily the assessment itself but the rule about regular reassessment, which means that no-one has long-term security about their benefit entitlement. The same Government decision that was made about ESA reassessment of people with unchanging conditions should be made here too.
Its next worst feature has to be the tightening of entitlement to the higher mobility rate, which is massively unfair on a group of disabled people who rely heavily on that money and the passporting to the Motability scheme. This is seriously detrimental to independent living, including access to employment.
The third worst feature is the use of the same independent assessor organisations that came in for criticism in the ESA work capability assessment. Only time will tell if the reported experience of disabled people about the delivery of PIP assessments is seen as fair or unfair.
I am pleased that communication needs was given a major priority in the assessment scoring. For instance BSL users will automatically score well. I am pleased that measuring when a fluctuating condition merits a score has been clearly stated, as has when taking a long time over a task means you will score. Indeed, I am very pleased that the full detail of what points you will be awarded for particular circumstances is available publicly, including on the gov.uk website itself. This means that you can work out exactly what you need to be able to prove to get the points that you think you are entitled to. If you can prove it to the assessor, it will be very difficult for the DWP to argue against it.
Whether the assessment is fair to all disabled people remains to be seen – I am not sure whether it will be fair to people with mental health conditions yet. However, I am pleased that the use of aids and appliances was included as worthy of scoring points. The fact that the Government wanted to downgrade the points available for using aids and appliances suggests they are more generous than they wanted, and that actually PIP is not turning out to be as cost-saving as they hoped. Indeed I am unsurprised by one comment that says that claimants are more “sick” than the Government thought. I think that the care assessment may move quite a few people who were getting the lowest rate of care on DLA up to the standard rate of care on PIP, rather than losing entitlement to benefits altogether.
My PIP claim
In the meantime though I have been progressing my own PIP claim, and through my experience have some advice to offer other people on DLA going through the same process.
Even if you are worried that your PIP claim will be rejected, you should nonetheless apply as you have nothing to lose. Try to get some help from your local disabled people’s user-led organisation or citizens advice bureau. Once you receive the letter telling you that your DLA is ending, you have up to 28 days to ring them or use a textphone to say you want to claim PIP, but do this as soon as you can in case there are problems in contacting them near the deadline. The conversation takes about 15 minutes once you get through!
They then send the application form which invites you to say the issues you have under each heading. You have a month to return it. Again, I would try to get it completed and sent back as soon as you can to avoid last-minute problems. Unless you have a good reason, a late return of the form can be rejected and you would have to start your claim from scratch, having lost your DLA in the meantime. The form looks better designed than DLA ones I have seen. My advice is to have a copy of the PIP document which sets out the points scoring system under each heading to hand, so you can carefully choose what you say to match what it is that they need to see. I also chose to send my form in by special delivery so that I could prove they had got it inside the time limit.
Once they have the completed form they might contact any medical specialists that you have told them can report on your situation, and in theory they might agree your claim then and there. However nearly everyone is told they must attend an assessment and the assessor organisation, ATOS or Capita, will write to you and propose an appointment date and time. You are allowed to contact them to rearrange the appointment but you must then attend the appointment (unless you have a very good reason) otherwise your claim must be started again. Get help from a friend or friendly advisor if any of this causes you a problem.
The rules say that the assessor must be medically qualified. They can ask you questions to help them understand your circumstances, and can ask if they can undertake some simple examination. In my case the interview took an hour, though apparently they can last for between 20 minutes and 2 hours. I had a copy of what I had said on my form in front of me so that it helped me mention to the assessor all the issues I wanted to cover. The assessor asked lots of questions that were appropriate to the assessment and wrote lots of notes on her computer. Her conversation indicated that she was accurately understanding my situation which was comforting. She also asked me if she could check what movement I had, particularly in my impaired limbs, which helped her to see that I was being truthful about my condition. I was told that I should indicate if something was impossible or painful for me to do and I was not required to do those things. Do remember that the assessor will be watching and noting what you do and say all the time, possibly even in the waiting room, and they are entitled to record any of that as evidence, because they have witnessed it.
Afterwards you can contact DWP and ask for a written copy of the report that the assessor sent to DWP, and I did this. The report was very comprehensive and generally very accurate of the meeting which was good to know. Surprisingly the report also noted my general appearance and my attitude towards the assessment, so you might like to think about what impression you want reported to DWP. I was keen to cooperate in order for the assessor to be able to focus on recording fairly what I was trying to get across. If the report is not accurate in your opinion, you would want to note any difference in case you need to disagree later with the benefit decision. As it happened I was happy with what the assessment said. This included an opinion by the assessor about me under each section, which will translate into the points score that will be used to decide my PIP entitlement.
DWP offer text updates on the progress of your claim and within a couple of working days they texted me to say they had all the information they needed to decide my claim. Two weeks later though they sent a standard letter saying there was some delay in the process, though no explanation was given as to why there was such a delay.
PIP decision letter
However eventually about 4 weeks after the examination I did receive the decision letter. Essentially the decision was based on the examination findings, which shows how important it is to get your views across at that meeting, and then get a copy of the report afterwards to check whether your views have been accurately and fairly recorded.
Appealing a PIP decision
The decision letter also set out what you could do if you disagreed with the decision. It explained the two-step appeal process of first asking for a mandatory reconsideration, and then going to an appeal tribunal if you were still unhappy. I would encourage everyone to take it all the way to tribunal if you don’t get what you think is a fair result earlier, but your whole entitlement is reconsidered at tribunal so you could lose some of what you had already been given too. If you do feel you want to go to tribunal you should do your best to get help with making your appeal, as people who get help are more likely to get a better result there.
Finally, the process can feel intimidating because of the potential threat to your existing income and lifestyle. You don’t have to face this alone if you don’t want to. Contact your local disabled people’s organisation who will be keen to help, or know someone else who can.