Written evidence from The National Autistic Society (PIP0008)

We welcome the opportunity to submit evidence to the Work and Pensions Committee to supplement its inquiry into Personal Independence Payment (PIP) applications, assessments and appeals processes. The Chair has posed a number of questions to us, which we answer in this document.

PIP can be a lifeline for many autistic people, through both the daily living and mobility components. It is vital that the process of applying, being assessed and challenging decisions understands the needs of autistic people, and meets them.

1. Which aspects of the current assessment process for PIP are and are not conducive to accurate decision-making? What improvements could be made?

There is an ongoing lack of understanding within DWP and assessment providers about the communication needs of people with learning disabilities and autism and in particular a lack of information in Easy Read format. The bulk of issues that autistic people and their carers who contact us relate to the face-to-face assessment and we have gone into more detail on these issues in our answers to subsequent questions. Anecdotally, we hear from autistic people – including through our Welfare Rights Advice Service – who say that they find the application form difficult to complete and many are unaware that they can ask for longer to complete the form.

There appears to be inconsistency in how people who cannot use the phone are treated. One person told us that an adjustment had been made for them:

“Due to ASD [Autistic Spectrum Disorder] and severe anxiety, I am unable to make phone calls. My husband called on my behalf. DWP have now added to my file that my husband can speak on the phone on my behalf.”

However, others do not seem to have been offered appropriate adjustments, leading to increased stress and anxiety. These highlight the difficulties for claimants with autism negotiating the telephone communication and the increased delays for those who wish to use a paper system.

“I have problems using the phone which lead me to suffer extreme anxiety and meltdowns so my husband makes calls on my behalf. He called about starting my claim and explained this to the person on the phone but they said that if he didn't hand the phone over to me, I would not be allowed to put the claim in.”

“I had written and asked for a form, but this was not sent so I had to phone which is something I find extremely stressful. The telephone menus were infuriating.”

“I was told that there was no other option than completing the telephone interview myself.”

“Mum rung for me, I had to then speak and give permission which was hard. Then when mum has rung since there has been difficulty even though it has been stated Mum would be the one ringing.”

“I was sent a letter before Christmas from the DWP saying that I would be given PIP instead of the other benefit so I thought this would be an automatic change over meaning I wouldn't have to do anything. Days later a form was delivered to me to fill in with a note saying that I had requested the change (but I had not requested the changeover - they had told me that they wanted to change my benefits) This was very confusing and I wasn't sure if I was meant to fill the form in or wait for an automatic change over.”

“I had to make countless phone calls to Atos just in order to get an appointment for a consultation. No-one told me I could have a home visit.”

A significant source of delays lies with DWP at the start of the claims process. The standard way to initiate a claim is to phone the DWP, complete the ‘part 1’ assessment over the phone, then wait to be sent a personalised and barcoded ‘part 2’ claim form. In addition to the accessibility issues resulting from a phone call being the default option, we have had reports of people waiting 14+ days to receive the part 2 forms, while people only have 30 days to complete and return the form. The 30 days start from the day the form is sent out, not the date the form is received by the claimant.

“There was a long (at least one month) delay between me contacting the DWP about starting my PIP claim and the application form arriving with me.”

“I was sent numerous letters saying "Do not do anything yet. You will be asked to apply for PIP", but no application form was sent to me until I telephoned the DWP twice. When the form arrived on 9th May 2014, it was dated 1st May and I was told to return it, with supporting evidence by the 15th May 2014. I had a very stressful bank holiday weekend before I was able to get through to them and get an extension to the 15th June instead.”

While people can request an extension for certain reasons, the DWP has refused on several occasions to more prominently display this option in letters and forms.

People with autism have reported that the form disproportionately focuses on physical disabilities, to the detriment of prompting information about non-physical difficulties. This is contrary to the policy intention to provide for parity of assessment.

“The form was misleading in that it was geared far more towards physical disability -- my son may be able to do something physically but his memory impairment does not always make this possible. I have HUGE concerns over people with poor literacy skills negotiating the form or even knowing where to seek help to complete it. It was stressful and the process was not explained when I applied on my son's behalf.”

“As I suffer from depression due to my long term health problems, filling in a form that lists all the things that restrict me from having a normal quality of life was near enough soul destroying, bringing me into a deeper depression.”

2. Do Atos and Capita staff conducting PIP assessments possess sufficient expertise to make accurate decisions on claims involving a wide range of mental and physical health conditions?
1. Do staff take enough account of additional evidence supplied by claimants?

Where assessors have a good understanding of autism, this can improve the assessment experience dramatically:

“I think I was lucky. My primary health condition is ASD [Autistic Spectrum Disorder]. My healthcare professional was a Speech and Language Therapist (the medical professionals that usually make an ASD diagnosis) that specialises in autism. I therefore didn't need to explain ANYTHING relating to my ASD. I just had a comment that "everything I wrote on the form was consistent with my diagnosis."

However, we have heard of worrying reports of some assessors’ poor understanding of autism, in particular how to conduct an accurate assessment of someone with autism and

“The professional only asked questions relating to physical ability and did not take into account issues relating to Asperger’s or the fact that my son has no peripheral vision.”

“The Atos assessment was a sham, I might as well have not been there. I was awarded 2 points. I asked for a mandatory reconsideration, and provided evidence which I felt entitled me to 12 points, but the DWP decision maker actually awarded me 16 points! I ended up with a very good report from the DWP. My concern now is that I was only awarded a 3 year award, when I have a life-long condition which won't change.”

“ASKED TRICK QUESTIONS. Asked me how far it is from my house to the pub and was clearly going to write down that I could walk that far in one go when actually I have to stop several times on the way, need someone with me so I don't get lost and only have the energy to complete this (short, simple) journey once a month at most.”

We are very concerned of reports that assessors are not allowing companions to have a role in assessments (where the claimant gives consent). Many people with autism lack insight into their own condition; a companion can help fill in the gaps where claimants are unable to communicate all the required information.

“Anxiety meant that my mother had to speak up on my behalf and the professional didn't want to take her responses.”

“The health professional made it clear that this wasn't all that welcome.”

Worryingly, we also hear from people who have tried to hand in further documentary evidence at the face-to-face assessment, to back up their claim, and have been told that it is not necessary. Evidence should not be refused.

Our charity’s Welfare Rights Advice Service also sees and hears instances of standard comments being made in decision letters. In particular, “appears well-nourished” and “was dressed appropriately for the environment.” On the face of it, these appear valid. However, the assessor has not dug any deeper to find out how and with what support the individual has done this. In reality, this kind of comment can ignore the fact that autistic people may have needed support to choose and put on an appropriate set of clothes, or cook a meal. This belies a lack of understanding in how autism impacts on a person’s life.

3. Is the face-to-face assessment appropriate for claimants with a range of different conditions?

A face-to-face assessment can present a significant challenge for autistic people, who may find it difficult to understand the meaning of questions and communicate their answers. Indeed, some autistic people may find it incredibly difficult to leave the house, make a journey to a new place, wait in an unfamiliar environment and then be required to answer the questions in an assessment. For this reason, there are a number of autistic people who would benefit from an assessment either taking place in the security of their own home, or instead having a paper-based assessment.

One person told us:

“They don't seem to understand that having to attend these appointments has a detrimental effect on your health, not just physical but mental too. My anxiety is increasing now just from thinking back about the whole process.”

There have been significantly more face-to-face interviews than originally anticipated. Indeed, we have been told of cases where claimants have been told by the assessor that the assessor themselves considers it unnecessary that a claimant has been called for a face to face assessment, when written evidence would have provided sufficient information to make a decision.

Many disabled people, such as those who are proven to have very serious impairments, long-term and degenerative conditions, simply do not need to undergo a full and rigorous reassessment for PIP.

Moreover, using additional evidence to inform the nature of individual assessments will help to ensure assessors have a better understanding of how an individual’s disability affects them. This contributes to better decision-making, which could subsequently reduce the amount of appeals launched following a decision on a claim.

We strongly believe that the Department could speed the PIP process up at no extra cost. In particular, the Government could save vital time and money by making better use of additional evidence that already exists about individual claimants, such as reports from specialists or care workers.

Our charity’s Welfare Rights Advice Service has also recently heard from a small number of claimants who have requested a home visit and submitted the relevant evidence to back this up. However, they have then been told by Atos that attending a home visit would be “too dangerous”, and refusing to conduct a paper-based assessment. It is vital that reasonable adjustments to the assessment process are not only hypothecated, but available and made.

4. What changes are needed to improve the accuracy of decisions made in initial assessments and in mandatory reconsideration, given that the majority of decisions that go to appeal are overturned?
1. What are the most common reasons you come across for decisions being overturned on appeal?
2. Is the mandatory reconsideration stage functioning properly? How could it be improved, or should it be abolished?

Fundamentally, this comes down to the quality of the assessment, the understanding of autism that the assessor has and that the right evidence is requested and used.

We find that common reasons for a decision to be overturned at tribunal are based on the fact that all the relevant has been considered. This often derives from the way that questions are asked. Tribunals appear to be better at asking the right questions and balancing the information that they are given. They also seem to engage better with people who support the claimant, to make sure that they get the whole story.

We are concerned that mandatory reconsideration is not properly identifying decisions that should be changed. From the experience of our Welfare Rights Advice Service, mandatory consideration only captures the most extreme examples – i.e. those that are manifestly erroneous. This means that many decisions that should be overturned are having to be pursued to Tribunal. Indeed, in advising people who contact our Service, we highlight that it is very unlikely that mandatory reconsideration will be successful and people will have to subsequently appeal. This is reflective of a system that is not functioning as it should, is inefficient, and causes delay and hardship to claimants.

5. What is the impact on claimants of delays in getting an accurate decision on their claim, and how could this be reduced or better managed?

While much effort and additional capacity has been put into the assessment process to reduce delay, due to the quality of assessments and the need to appeal, many autistic people are still facing length de facto delays to getting PIP. While they are appealing a decision, they are at a significant financial disadvantage.

In terms of acting as a gateway benefit, people are unable to apply for disabled bus pass, or a train pass, blue badge and other concessionary cards for example for leisure activities. Furthermore, carers find themselves to claim for important support that they should be entitled to as a consequence of the claimant’s eligibility for PIP – particularly while appeals are going through.

In summary

• There is an ongoing lack of understanding within DWP and assessment providers about the communication needs of autistic people.
• Reasonable adjustments to the application and assessment process are not always made. Meanwhile the form seems better equipped to identify physical disabilities.
• Companions in assessments are too often not able to play the role in the assessment that is required to make sure the claimant’s needs are identified.
• Assessments fail to uncover the underlying needs behind the way an autistic person presents at assessment, and how much support they require.
• External evidence continues to not always be accepted and/or used in the assessment.
• Inappropriate face-to-face assessments persist, while paper-based assessments are not often carried out. We have received recent reports of home visits being denied on the basis of safety.
• Tribunals appear better at taking a holistic view of a claimant’s needs.
• Mandatory reconsideration is failing to accurately identify all those cases that should be reviewed and overturned. This is inefficient and puts additional strain on both Tribunals and the individuals concerned.
• With so many people having to appeal erroneous decisions, delays in the overall applications process persist.

April 2017