Harrington Review Phase 2 DWP

Sensory sector response to Professor Harrington's call for evidence to inform his second year review of the Work Capability Assessment

August 2011

Introduction

This submission is a product of the collaboration between several of the leading charities concerned with sensory impairment. These charities include RNIB, Action for Blind People, Action on Hearing Loss, Sense, Deafblind UK and The Guide Dogs for the Blind Association.

Our submission is in line with the aim of the employment and support allowance i.e. to identifying those individuals who might face extra barriers to accessing work and therefore benefit from the additional job search support provided by ESA. It is not our belief that people with a sensory impairment should automatically be moved into the Support Group of ESA, but we do want to see people supported appropriately into work through the help available in the Work-Related Activity Group.

Executive summary

Many of the types of jobs in the areas of the economy that have exhibited growth in the last decade are not generally available to people with severe sight loss e.g. security, construction, retail, driving, nursing and social care work. Consequently many of our clients already have a limited capability for work as defined under the Welfare Reform Act, 2007. In a survey of ninety--eight blind and partially sighted claimants almost two in three (60%) stated "my impairment or health condition means that there are some jobs I cannot do," - a clear sign that sight loss leads to a limited capacity for work.

It would be our expectation that most people with a sensory impairment would be placed in the work-related activity group. However DWP figures suggest that most are being found fit for work and ineligible for ESA.

The descriptors on sensory impairment have been drafted so badly that it is impossible to apply them consistently. It is for this reason

1 that in response to our call for evidence, claimants in four out of five cases were appealing their decision. It is also the reason why so many appeals are successful.

Decision makers lack departmental guidance on how to interpret the descriptors and thus rely too heavily on the ATOS health care professional's assessment. However these assessments are being performed by people who lack the specialist knowledge to perform tests to acceptable standards, treat people appropriately for the condition they have or have adequate knowledge of the feasibility of aids or adaptations.

The availability of aids and adaptations to assist people in independent living is being incorrectly applied to a work environment e.g. the use of a guide dog to travel between buildings is being used to assume the automatic ability to navigate within a work environment.

The descriptors do not reflect a real world work environment or the challenge of even finding work. People are being asked if they can make a cup of tea or travel to the assessment centre. They are not being asked if they can use a jobpoint kiosk in a job centre.

"The work capability assessment focuses far too much on personal issues. I was asked questions like what time did I get up in the morning and was I able to make a cup of tea. How does this measure my ability to work?" Mr Y, West Midlands

We recommend the formation of a working group tasked with replacing the current unworkable and unfair descriptors for people with sensory impairments with separate ones for speech, hearing and sight loss. These descriptors would be based upon 1) awareness, 2) communication, 3) location and 4) navigation.

This task is made more urgent by the fact that there has been so little change since the first review conducted by Professor Harrington. Examples of this include the fact that the free text box in the LIMA software is only being piloted and has not been universally applied; another is the lack of revised guidance.

Finally the submission below contains robust evidence in support of our recommendations. This evidence includes personal testimony, a survey of nearly three hundred advice workers, and a

2 survey of ninety-eight people with sight loss (some also with hearing loss).

Question 1 Have you noticed changes in the WCA process as a result of the year 1 recommendations? If so what are these changes?

We fully understand that some recommendations may take time to be implemented however at the time of writing this response (3rd August 2011) we are aware that not all of Professor Harrington first review recommendations have been implemented.

One such example is that of the Health Care Professional free text box. This has only been provided to decision makers as a test to assess the "quality" of the text provided. Nor at present is there any documentation identifying the criteria for this "DWP quality test." At present we do not know when claimants will be sent the free text section (as per the year 1 recommendation 6). We believe that it is important that the individual claimant has the ability to compare their own free text on the ESA50 with that provided during the face-to-face assessment.

In addition we are currently awaiting news of whether the Government intends to implement the recommendations arising out of the two working groups on mental health and fluctuating conditions.

In conclusion we have seen little improvement in the quality of decision making and continue to see more often than not wrong decisions being overturned at Appeal tribunal.

Question 2 Are there further areas of work that you think should be added to the programme of work for year 3? If so what should these consider?

There are serious and significant problems with the WCA descriptors in that they do not reflect the challenges of people with sensory impairments in finding and obtaining work.

The quotations below are just some of those we have received from claimants:

3 "I would like to tell you about my esa assessment they have assessed me as capable for work even though I am registered blind have bad psoriatic arthritis, diabetes, kidney disease, thyroid problems, high blood pressure and many other health problems why is this so when I know of other people who have hardly any problems being classed as unable to work. If I could work I would have been still been performing my duties at work. This is not just a sight issue but I'm being told I will have to sign on every 2 weeks and go for interviews, bearing in mind I hardly leave the house" Mr A of Yorkshire

The descriptors on communication fail to take account of the fact that a person has to be able to both communicate expressively and receptively to work successfully. For example, a person who has lost their hearing in adult life may be able to communicate using speech, but would need assistance in order to understand somebody communicating with them. Likewise, a profoundly deaf person who has excellent lipreading skills may be able to understand someone else, but could find it impossible to communicate with them. Either disability presents a barrier to work that requires assistance to overcome.

Specifically the current descriptors lack an appreciation of the realities of the work environment for people with sensory impairments. An example of this is provided by the “understanding communication” descriptor that refers to "understanding a simple message from a stranger". The descriptor is written to include communication in accessible formats such as Braille but it is almost inconceivable that a stranger would either know that this was the preferred medium for the employee or have the ability to communicate in Braille. Furthermore the descriptor only refers to Braille as the only alternative format. Likewise, the adjustments used by many deaf and hard of hearing people are not readily available. The existing guidance does note that being able to communicate in British Sign Language, for example, is not a substitute for spoken English, as it requires the presence of a third party to interpret.

It is clear that claimants with a sensory impairment will find it far more difficult to have a fair assessment using the current descriptors and there needs to be a common sense approach into a) the formation of descriptors and b) the interpretation of some of the descriptors. For example; it is unfair to only award points to

4 claimants who have problems with awareness and going out due to a mental health condition but not people with sensory impairment and no mental health issue but experiencing the same problems.

The quotation below illustrates the problem of decision makers over reliance on an ATOS assessment.

"In July 2009, I attended a medical assessment for ESA. Part of the assessment included the medical professional passing me a piece of paper, upon which were printed some words. I was asked to read these words. Because of my vision disability, I could not. The medical professional advised me the text was printed in 16 point, and that I had held the paper at a distance of about 20 cm when I tried to read it. I understand my inability to read the text meant I earned the maximum number of descriptor points (15) for the assessment. Therefore, I qualified for ESA.

It took the DWP until November 2009 to inform me that I had failed the assessment, and was therefore not eligible for ESA. I requested a copy of the report from my medical assessment, and was astonished to discover there was no mention of the entire reading test described above. I lodged an appeal against the DWP's decision, also in November 2009. Later, the DWP contacted the relevant medical services company, asking them about the missing information in my medical report. In reply, another doctor from that company stated that he agreed the reading test was not mentioned in the medical report. However, he also stated that, as I was able to go to the local shops "to buy bread and milk", I must be able to read 16 point text at 20 cm. Not only is this incorrect, it is an absurd claim to make. It indicates to me that the so-called medical professional has no idea whatsoever about vision disabilities or their effects.

In March 2011, the DWP advised me that a Tribunal had been held (without my knowledge) and that they had decided to reverse their original decision. I was then awarded full ESA, backdated to August 2009.

This whole sad tale of mishaps and incompetence is extremely worrying, whilst also bordering on the insane. The original medical assessment was totally flawed because of the

5 negligence/incompetence of the medical professional conducting the test; the second medical opinion was bizarre, demonstrating only the ignorance of the doctor concerned; the so- called tests which were conducted failed to take into account any of the less obvious effects of my disability; and the DWP took 19 months to arrive at a decision without any recourse to properly qualified medical opinion. I should add that, from the outset in 2009, I had provided full details of my GP, the Eye Clinic at my local hospital, and the ophthalmic surgeon who had been dealing with my case for many years. The DWP chose to ignore all these sources of reliable information. Instead, they concentrated on a single vision test, the results of which they managed to lose.

It is not surprising this system of medical assessment is nowhere near being fit for purpose." Mr M.C of Surrey

We are unhappy at the example of the location of a fire escape being used as a proxy for communication in the workplace. Not only does this set the bar unreasonably high in terms of the minimum level of communication necessary to undertake paid work, but it implies that such communication (which could be by pen and paper or in Braille) can occur in the case of an emergency. This issue has been raised repeatedly with DWP senior officials but rejected by them.

The following account from an NHS doctor reinforces the lack of application of the current descriptors to the actual work environment.

"I had a patient who was once assessed by system for Employment Allowance by one of their medical staff in face to face assessment. All his benefits were stopped due to the fact that as he had made his own way to the appointment he was found to have no significant visual impairment! There was no examination of the eye or vision." NHS Doctor, Midlands

The lack of relevance to either work or obtaining work is apparent to claimants as well as doctors, as the following quotation illustrates.

6 "The work capability assessment focuses far too much on personal issues. I was asked questions like what time did I get up in the morning and was I able to make a cup of tea. How does this measure my ability to work?" - Mr Y of the West Midlands

The emphasis on adaptation is leading to some perverse interpretations of what constitutes impairment functionality. The use of guide dogs for navigating the street environment is being interpreted as potentially equipping them to navigate unfamiliar work environments too. The Guide Dogs for the Blind Association (Guide Dogs) is concerned that this interpretation of descriptors may have the effect of deterring people from becoming independently mobile in case it leads to them becoming ineligible for ESA.

The use and value of other aids and adaptations have also been misperceived in the assessment process. People with hearing loss who wear hearing aids or who have a cochlear implant have been assumed to have full hearing when using them, without the assessors understanding that these aids will usually only restore a fraction of hearing, and that issues such as background noise and tinnitus can further reduce the ability of someone to communicate effectively even when wearing an hearing aid.

The lack of understanding of the appropriateness of reasonable adjustments in a workplace setting is illustrated by the following testimony.

"I am visually and hearing impaired. I have little vision, and my hearing is impaired to the point that group meetings and training is almost impossible. This in itself causes a huge obstacle in carrying out work. An obstacle that can be overcome, but only if you have the patience and willingness of both employer and fellow employees in overcoming problems. In my experience, employers are limited in these aspects, and so are fellow employees, and there isn't a clear cut law that forces them to do so. The normal route for someone with a visual impairment, would be to use screen magnification, where the impairment is lesser, or a screen reader, such as Jaws, where there is no useful vision to read anything on a screen. For people with a hearing impairment as well, a screen reader is a problem. I have not found a single electronic voice that I can hear sufficiently enough to be able to carry out a job. Will a 'fit for work' assessment be aware of that?

7 Finally, the thing that prevented me from carrying out my job, when I was previously employed, was windows...no, not the Microsoft kind, but those that line just about every place of work, that allows daylight or sunlight through. When I use my computer at home, I sit in darkness, as my eye condition prevents me from seeing any LCD screen in anything else other than a dim or dark environment. I could not be found a non windowed room to work in, and could not ask everyone else to work in darkness with me. Despite the suggestions of building a 'hut' kind of box for me to work in, this never materialised, as I think no one had the confidence to proceed down such an unusual route. Telephone customer service is my background, and is really the only thing that on one level is open to me. However, my hearing and visual loss prevent me from carrying this out, and my blindness has progressed considerably since I was last employed. I fully realise that there are lots of solutions for people with disabilities in today's society, and that the barriers have come down, but I really don't think we have even come close to resolving dual impairment issues, let alone assessing whether a person can find and carry out work with them. I fear that no current assessment can provide the detailed information to allow an assessment to be made. I therefore suggest that such a process may well be flawed." Mr D of Woking

It is our conclusion that the descriptors as they stand are inadequate, and, working together, we have identified four areas where we believe people with sensory loss face specific barriers to paid work. These are:

i) Awareness; including awareness of the direct environment surrounding the individual, including hazards and other people.

ii) Communication; the ability to communicate both expressively and receptively – we agreed that this would be best assessed through the use of two descriptors.

iii) Locating and finding; the ability to locate or find physical objects and to use them safely.

iv) Navigation; the ability to plan and execute a journey, both within and without the built environment.

8 We believe that these four barriers should form the basis of revised and improved descriptors for people with sensory loss.

Recommendation - A framework for producing better descriptors for people with sensory impairment.

1 - We recommend that a working group be established to improve the descriptors for people with sensory impairment. This group shall include people from organisations representing people with a range of sensory impairments.

2 - That the approach to improving the descriptors be to take account of the full range of barriers facing people with sensory impairment, as well as indicate the interaction between descriptors for people with multiple barriers to work.

3 – That the descriptors be redeveloped within the context of an understanding of the skills and abilities needed to undertake paid work.

3 - That the descriptors should consider the use of aids and adaptations only insofar as they are reasonably used, available and of relevant assistance.

4 - That significant emphasis be placed on the guidance that any activity can be undertaken ‘safely, reliably and repeatedly’. The ability to perform any task accurately and swiftly is a key skill in the workplace, and that this should form a fundamental part of the assessment.

Question 3: At what stage should we stop making changes to the system and let the changes already being made bed in to ensure they are having the desired impact?

People's living standards depend upon the ESA application system so it is important not to stop making changes until the process is considered fair by all.

It is imperative the entire process is as good as it can be rather than the aspiration of an assessment being ‘theoretically perfect’, the goal should be to achieve an assessment that is ‘fit for purpose’ and achieves the desired outcome of determining ‘limited

9 capability for work/work related activity. The new descriptors are a long way off from achieving this for sensory impaired people.

In theory it should not take years to get the assessment right, so we would anticipate once the assessment is fit for purpose then further independent reviews should not be needed.

Question 4 Does the Year 1 recommendation go far enough in placing the right emphasis on face to face assessment?

While we recognize the need to improve the face-to-face experience for claimants, the assessment itself can only be as strong as the descriptors allow. Without descriptors capable of delivering accurate and meaningful results, the assessment will always be imperfect.

We understand the desire to make relatively quick fixes in the first year of the review, but feel that there is a need to move beyond the process of the review and revisit it at a more fundamental level. Whilst not redesigning the entire WCA, we believe that specific descriptors need to be improved if the test is to be seen as fair.

Question 5 Do you have any robust evidence of the face to face assessment process and outcomes which will help to make recommendations for future improvements?

The relatively small numbers of people with sensory impairments going through the WCA process, combined with the inability of the Department for Work and Pensions to segment throughput by impairment type means that robust quantitative evidence is difficult to gather.

We do have evidence from communication professionals that they have been brought in, during the course of WCAs, to provide an assessment of the fluency of a deaf claimant in British Sign Language. Such a request is not only unethical, but also provides no indication of an individual’s capacity for work. We demand that this ceases.

10 We have a general concern that the Health Care Professionals undertaking the assessment lack an appreciation and understanding of disability as opposed to medical conditions. The following recent example is evidence of the poor quality decision- making that has been all-too-common throughout the brief history of the WCA.

"Mr X of Chesterfield has been registered blind since childhood and has two artificial eyes. He is a Braille reader and guide dog user. In the middle of July he had a WCA medical and was awarded 0 points. He was notified of the decision on 2 August, phoned his local Job Centre Plus and was been told the decision was overturned on the 3rd August." (account from an advice worker)

"Mr Z at this WCA was given an eye sight test by an HCP that consisted of asking him whether he could read by waving pieces of paper at him. This was despite his consultants reports being provided to the assessor that detailed his level of sight loss and sight condition. His diabetic GP report says "no pulse for years" (neuropathy) however HCP says pulses found in diabetic client's feet. The GP's report was ignored in favour of the ATOS assessment. At the decision was overturned at the tribunal." (account from an advice worker )

"My assessment consisted of a lady asking me what I do on a day to day basis. She did not want to see proof of my 20 hospital admissions for the previous year, and due to my visual impairment I suffer from severe headaches constantly with which I am on certain medication for (i.e. tegretol which is is an anti-epilepsy drug, but because I do not have epilepsy she said this drug must be disregarded even though I take is as a muscle relaxant) I also suffer from depression due to my constant pain but she was focussing more on the depression than my visual problems I actually stated that I was not off of work due to my depression but because of my sight and headaches but she did not seem interested in this. When I phoned the ESA team they said that I was put in the work related group because my illness would get better!!! I explained that my eye sight would never get better and she said she meant my depression would get better and there was no mention of my sight problems she told me to appeal but the appeal form was not available in LARGE PRINT so told me to get somebody to help me to appeal." - Mr P of Bath

While these cases show that poor decisions can be overturned swiftly, it highlights the fact that such decisions continue to be made in spite of changes to the assessment process.

Visually impaired people we work with have informed us that during the assessments the Health Care Professionals are using amateurish methods of assessment and record keeping. The following quotations illustrate how amateurish some of these incidents are continuing to be.

"I was interviewed by a registered nurse who knew nothing about sight problems. I attended the interview using a crutch due to a bad fall! The nurse examined my injured foot and to my surprise she wrote in the ATOS report that I had injured my left foot but it was actually my right foot! How can one accept this as a proper examination when the interviewer states such incorrect information?" Mrs M of Banstead

"In my WCA, I informed the nurse of my problems with vision, these mean I am currently unable to read or use a computer. In my appeal papers, the only mention of vision was that I could recognise a friend from 15 metres!" Mr S of Glasgow

Robust evidence can be found for the scale of poor assessments from the Disability Benefits Consortium survey of disabled people in 2010. Ninety-eight blind and partially sighted people responded. Almost two in three (60%) stated "my impairment or health condition means that there are some jobs I cannot do," - a clear sign that sight loss leads to a limited capacity for work. One in three (32.5%) stated "my impairment or health condition means that I cannot work at all." Almost half (45%) had not had a job for two years or longer with 12.5% stating "working would be bad for my health." However these percentages don't accord with the figures for the proportions of blind and partially sighted people being put into the support, work-related activity group or being found fit for work. Table 10 of 5.3 of "Employment and Support Allowance Work Capability Assessment by Health Condition and Functional Impairment" DWP, dated October 2010 contained the following data (using the same ICD classification) and for 4200 in total of our blind and partially sighted clients.

200 placed in the support group - 4.8%

12 1300 in the work related activity group - 31% 1400 found fit for work - 33% 1300 did not complete the assessment - 31% 100 still in progress - 2.4%

Disabled people are experts on their own condition and it would be our expectation that the proportions being placed in the support groups and work-related activity group would be higher than they currently appear to be.

It can therefore be no surprise that no one who sent us testimony reported that applying for ESA was easy. Nor was it a surprise that 4 out of 5 blind and partially sighted people were appealing their WCA decision.

Question 6 Are you aware of any concerns about the face to face assessment and if so where have these been focused?

On the basis of complaints made to us from people with a sensory impairment we are concerned that these HCPs and their own administration support staff lack adequate knowledge of how to meet their needs whilst undergoing the WCA. This is particularly true of people who have multiple sensory impairments.

There is strong evidence that those responsible for arranging face- to-face assessments are, on occasion, providing insufficient communication support for those who need it. Deaf and deafblind people may use a range of communication support for the WCA including BSL interpreters, Sign Supported English (SSE) interpreters, deafblind manual interpreters, lipspeakers and keyboard interpreters. Deafblind people will often need assistance to attend the assessment. Either the wrong form of support is booked (a note-taker, for example, instead of a BSL interpreter), or none is provided. This alone is proof of a lack of understanding of the needs of the claimant, and is likely to impact upon the quality of the assessment. The responsibility for ensuring that the right form of communication support lies with ATOS Health Care acting in the role of a public authority under contract to the Department. ATOS is therefore subject to the public sector duties of the Equality Act 2010, and any failure to comply with the legislation should be investigated and appropriate penalties applied.

13 Communication with deaf and deafblind people is also generally slower than a regular speech conversation, meaning that appointments will generally take longer than the target time allowed for this.

Poor communication skills have also been identified among some WCA assessors, examples have included a lack of eye contact and clients feeling rushed.1 Such behaviour will not only hinder communication with deafblind people but is also likely to raise anxiety. Given such reports, we believe that we can safely assume that people who lip-read or assess body language to assist with communication would experience difficulties.

Health Care Professionals rightly focus upon what they can do but then fail to consider how this is achieved. There is also a failure to fully consider fluctuating eye conditions as some people are incapacitated by their condition on some days but not others.

We recommend that:  Staff arranging appointments should be aware of the different types of formats and communication support that a claimant may request and know how to arrange it.

 System design must allow for the extra time required to communicate with deafblind people and book longer appointments for the assessment.

 Assessors must be trained in appropriate communication skills and should adopt them, even if a communication professional attends the appointment as well.

Question 7 If you have any specific concerns about the IT supporting the assessment (i.e. the Logic Integrated Medical Assessment or LIMA system), do you have any robust evidence about how this affects the assessment or its outcome?

The LIMA software is a hybrid creation being essentially a programme that is designed to assess impairment functionality with drop down lists of medical conditions, and that is administered

1 Dryburgh, K., May 2010, Unfit for Purpose: Evidence on Employment and Support Allowance (ESA) from Scottish Citizens Advice Bureaux, 25

14 by medically trained staff. It fails to work adequately because whilst its snapshot questions may not be part of a complex decision tree or algorithm it is based upon descriptors that don't reflect the work environment.

The underlying problem with LIMA is that it remains rooted in a medical model of disability, whereby the barriers to work remain sited with the claimant rather than with their environment. We know from working with people with sensory impairments that they can and do work successfully in a wide variety of jobs2, but that prejudice, discrimination and the availability of suitable assistance serve to limit opportunity.

Question 8 Is there a need to present and explain the face to face assessment in a different way, making it very clear to claimants what it will involve and how a functional assessment relates to work capability?

We have received a number of complaints from people regarding the quality of their face to face assessment. The following are just some of the testimony sent to us:

"The Face to Face Assessment it would be preferable if a Visually Impaired person was seen by a specialist eye care person. It is a very specialist field. If someone does not understand what hazards a visually impaired person faces to live their life and in a work place then they cannot fairly assess that person. I know of one person who is visually impaired who went for an assessment and because they could see a white piece of A4 Paper put in front of them it was assumed they had good sight and they were declared fit for work with no assistance." - Mrs T of Worcester

While there is no doubt that the face-to-face assessment could be explained more clearly to claimants, and the initial telephone call can be regarded as a step in the right direction, this information must be made available to every applicant. At the moment, the provision of information for people with hearing and/or sight loss leaves much to be improved.

2 See, for example, Opportunity Blocked, RNID, London, 2007.

15 At the moment we do not believe that the WCA does relate the functional assessment to work capability, as the assessment has never been based on a consistent model of what ‘work’ actually involves. Neither has the government yet provided us with a working taxonomy of the two ESA groups

Question 9 What one thing would you change about the WCA to make it operate more fairly and effectively?

We have made the argument for separate and appropriate sensory descriptors that reflect the challenge people with sensory impairments face in obtaining and retaining paid work.