Work & Pensions CommitteeWritten evidence submitted by Headway—the brain injury association
About Brain Injury and Headway
1. Each year an estimated one million people attend hospital in the UK following head injury. Of these, about 135,000 are admitted to hospital each year as a consequence of brain injury. It is estimated that across the UK there are around 500,000 people (aged 16–74) living with long-term disabilities as a result of traumatic brain injury. The most common causes of traumatic brain injury are road traffic collisions, accidents during leisure or work, assaults and falls.
2. Added to this, there are many thousands of people living with the effects of acquired brain injury from other causes such as stroke, haemorrhage, meningitis, encephalitis and brain tumour.
3. The effects of brain injury are wide ranging and can result in complex physical, cognitive and social disabilities. Individuals may also experience changes in emotions and behaviour and may lack awareness of how they have been changed by their brain injury, making it very difficult for families to cope.
4. Please see the appendix at the end of this consultation for further details.
5. Headway is a national charity that aims to promote understanding of all aspects of brain injury and provide information, support and services to individuals with a brain injury, their families and carers.
6. A network of 117 local groups and branches operates across the UK, providing a wide range of services including rehabilitation programs, social reintegration, outreach, carer support and respite. Nationally, Headway UK provides support to groups and branches and helps to deliver high-quality services through guidance on policies, procedures, standards and training. We also have a free national helpline, which provides support, information and signposting to appropriate services.
7. At the time of the Work and Pensions Committee inquiry into proposals to replace DLA with PIP, Central Government have just completed a consultation on the UN Convention on Rights to Disabled People (UN CRDP) and where appropriate we have made links to Convention and the articles contained within.
Welfare Reform
8. The replacement for Disability Living Allowance (Personal Independence Payment (PIP)) aims to cut the amount paid to working age adults by 20%, but it is likely that many more than 20% of disabled people will be subject to loss of this benefit because of new eligibility assessment measures and a change from three to two main rates of payment
9. The DWP’s proposed assessment criteria for the new PIP takes wider provision into account eg it looks less at the “ability to walk” and more at the ability to “get around”; eg if someone can use a wheelchair independently, they would be deemed to have the ability to “get around”. It neither factors in costs of procuring nor maintaining manual aids eg equipment used to transfer from wheelchair to chair, the wider environment or the effects on the person using them (articles 19 & 20). It also takes no account of aids such as cars or scooters that a disabled person may need to live an active and independent life—aids which DLA currently supports.
10. Importantly, the new benefit still takes very little account of a person’s cognitive disability with regards to their ability to get around—someone who is physically very able can easily be incapacitated by their cognitive problems, meaning they are unable to plan, initiate and complete a journey without continual support.
11. A key concern we have heard is that the new PIP may provide for disabled people to “survive”, but not to “live” (see, 2.9).
12. Work capability assessments have been criticised because they do not take into account mental health and fluctuating conditions as well as physical impairments. There is fear that the new PIP assessments will do the same.
13. Other categories in the proposed criteria also would also ignore effects or costs associated with impairments/conditions, by focusing narrowly on tasks that would restrict independent living. The criteria fail to consider reductions and constraints on other budgets and the individual freedom afforded by DLA currently, to top-up/purchase more suitable provision than is available through statutory organisations (Articles 5 and 28).
14. A recent report published by the Citizens’ Advice Bureau (CAB, 2011) provides evidence and testimony on unfair and inadequate health assessments undertaken through Work Capability Assessments for Employment and Support Allowance (ESA). “Scottish CAB have advised many clients who have been found fit for work in their work capability assessment despite suffering from serious health conditions and face major barriers to work…Bureaux have reported a worrying trend where clients who win their appeal [to have the decision that they are fit to work overturned] are quickly given a new assessment and found fit for work again or are repeatedly re-assessed”.
15. Other concerns raised amongst people with a disability about the work capability assessments surround the inherent ambiguity in how the DWP monitors, and cost-recovers from, the companies when decisions are successfully appealed by claimants. There are concerns that this will carry over to the management of DLA/ PIP assessments. They further feel disadvantaged by the government on this, when they stand to lose income themselves. Related to this is the targets system that assessors will use for PIP, which, for the work capability assessments, have resulted in far more people being removed from incapacity benefits than the government predicted (69% as opposed to a projected 49%). As many as one in five working age recipients of DLA in Scotland may stand to lose their benefits when the new assessments take place. The high numbers of people moving off Incapacity Benefit through current work capability assessments include mistakes reflected in the high rates (40% UK wide and up to 70% in Scotland) of successful appeals.
16. Care charges (falling under the Scottish and Local Governments’ remits) reduce disabled people’s available income particularly when they enter employment. The guidance available to local authorities in England allows disabled people to retain more of their earnings when care charges are being assessed. The current care charging guidance in Scotland, taken together with the recent cuts to the Independent Living Fund (ILF), have reduced the income of some disabled people in employment to below Income Support levels (after housing costs, travel to work, etc are taken into account) (Articles 5, 19 and 28).
17. Disabled people are and will be disproportionately affected by the cuts labelled as “welfare reform”, both in terms of their income and the services they receive. Taken in sum, such “regressive government policies seriously undermine the rights of disabled people and the UN [Convention]”.
Two Rates of Award
Setting the Rate Thresholds
18. We notice with some concern that the draft criteria have been written without any statement of the thresholds that will determine which rates a person will be awarded.
19. Many respondents to the consultation expressed fear and concern over the possible withdrawal of the mobility component due to tightening of the criteria, and refer to the ability to use the mobility component to fund a Motability car as their main means to independence. It is often people who currently sit in the middle of the scoring in the new criteria for certain activities who will benefit most from the benefits DLA and PIP bring.
20. Without seeing what thresholds are needed to be awarded the different rates of the benefit it is impossible for us to comment fully on whether these criteria are suitable or not, but we call upon the Government to ensure that, when placing these thresholds, all people who need this benefit are protected. Whilst the simplification of the benefit could, in theory, make it easier to administer, the reduction in the number of components, particularly in the “Care” component, will potentially stop a lot of people who currently benefit from and need the lower rate of DLA from receiving it. The risk is that it will make it less equal and that some people will get a high rate of benefit while other vulnerable, disabled people get nothing. The proposed changes will result in the new benefit being less appropriate to each individual and will result in fewer people being entitled to the benefit.
21. There are concerns regarding the current “main meal” assessment as this is one of the main criteria for awarding benefit and does not accurately reflect the support people with an ABI (acquired brain injury) require to enable them to carry out this everyday activity. Help with planning a meal, supported travel to purchase food and food preparation all require a high level of support. Assessing only the ability to cook a meal does not reflect the high level of support needed to complete this task and is a crude judgement of people’s abilities.
22. Due to the many cognitive impairments that most people with an ABI have, we would suggest that it will be a huge struggle for many people who are unable to process and retain information, to complete the application form without requiring assistance.
23. The application process for DLA is a standard application form and does not provide the scope for people with an ABI to provide information on the level of disability they have. There is also no opportunity to provide information on cognitive deficits—the most common consequence of having a brain injury. It is appreciated that it is unrealistic to have an application form which reflects the full range of medical conditions and/or disabilities; therefore there is a reliance on the assessment process, which many people perceive as being inconsistent, unfair and very often inaccurate.
24. The main reason for lack of understanding of DLA is the inconsistency in the current assessment and award process. There is a strong view that the assessment panels do not have the level of expertise required to assess the complexities of ABI. Also, many people feel that the GPs used to carry out these assessments do not have the required level of knowledge or expertise to make appropriate assessments. This inconsistency impacts on people’s ability to understand the application process rather than the problem being with completing the application form. As such, we would strongly recommend that a neurologist, neuropsychologist or neuropsychiatrist should be a member of any assessment panel involving a claimant with an ABI, in order that an accurate, competent and safe assessment can be made
25. Having two different levels of award for each component part of the benefit does recognise that people with certain conditions will have varying degrees of similar needs and the amount of benefit should reflect this. Again, unless there is a clearer and consistent assessment, appeal and award process, there will continue to be confusion and lack of public confidence in the process of allocating DLA and the new Personal Independence Payments.
26. By removing one level of award as with the current system, some people with disabilities will lose benefits, which will have a massive impact on their quality of life and their ability to play an active role in their community. As the form very much focuses on the physical aspects of disability (which as already mentioned, not everyone with ABI will have), many people with cognitive problems that affect their ability to get around and participate in society will go unrecognised. We would suggest that it could also be potentially harder for those currently on the low or middle rates to get the benefit at all, which would result in even greater financial hardship for this particular group of disabled people and their carers.
27. People who already claim the lower rates of DLA are awarded the benefit on the basis of need—this need will not go away simply because the lower rate has been withdrawn, but it seems, will simply be ignored.
Automatic Entitlement and Indefinite Awards
28. We think it would be fair to assess each claim on the basis of need, as long as the assessments are carried out equitably by professionals with the relevant clinical expertise in the condition concerned. If someone has an obvious condition which is regarded as a long term condition and the prognosis for that condition is that it will not improve with time, then we would suggest that reassessment is clearly not necessary.
Additional comments from our service user panel
29. What can improve in the longer term is how people with these conditions learn to cope with their disabilities, and DLA has been instrumental in improving people’s quality of life by allowing them to have the financial freedom to lead a more independent life. People who have sustained an ABI will not always be able to regain certain brain functions; therefore the cognitive and mobility deficits will not be regained through time. People with an ABI will also require ongoing support both from a physical, emotional and psychological perspective with their disability being life-long condition. As such, there should be automatic entitlement to DLA and the new Personal Independence Payment. As already mentioned throughout this document, an ABI has a massive impact on energy levels, ability to concentrate, anxiety, memory, planning functions etc, all of which are “hidden” impairments that are difficult to demonstrate on the current forms. If an individual’s brain injury is severe and there is little chance of further improvement, there should be no requirement to have continual assessments and reviews, which cause undue stress and anxiety for people with long term medical conditions, their families and carers. Repeated, unnecessary assessments also incur an additional higher financial cost to the DWP which is money that could be saved and used far more efficiently and effectively.
Qualifying Period
30. We believe that the length of time from application to securing DLA payment is unacceptable. The proposal to have a six months qualifying condition does not reflect the fact that some medical conditions have an instant impact on people’s ability to (return to) work and function normally. For some conditions such as ABI the medical prognosis is straightforward and depending on the severity, these conditions should not have to meet the six months qualifying period. The length of qualifying period also causes undue financial pressures for carers and families and makes life even more of a struggle, exacerbating the impact of the ABI. This additional financial pressure can often lead to further anxiety, debts, family break-ups and mental health issues.
31. The impact of a six-month qualifying period also has a huge impact upon many family members who instantly become carers following a trauma. Many have to give up work to assume a caring role and therefore the financial burden is immediate.
Passporting
32. It is essential that the new PIP retains the passporting that benefits so many DLA claimants today. Schemes such as disabled travel cards and Motability are key reason why many disabled people are active members of society, and withdrawing these services would condemn thousands of people to a life of poverty and reliance on social care services.
33. There is an inconsistency in allocating bus passes, and only those who qualified for the middle and higher components receive bus passes. For those people with a disability who can access public transport, the travel card has huge benefits, and assists people to get out and about at a reduced cost. For others who have used their mobility component to fund a car, this has greatly increased their independence to get about and remain more active. It would useful to review the issue of travel cards with the introduction of the new benefit; as part of the assessment process it should be established if applicants are able to use public transport and would wish to access a travel card. This would lead to greater social inclusion and opportunities for increased independence.
34. DLA and the new PIP should be a passport for free prescriptions and eye care as currently only those people on income support receive free prescriptions and eye care. DLA and the new PIP is a benefit which recognises that people have a medical condition yet those who live outside Scotland are required to pay for their own prescriptions and eye care.
35. Many people with a long-term condition will require totake medication for long periods of time and the cost of their medication can often be a financial burden. Given the fact that DLA is a benefit based on people’s medical needs, is it not appropriate that they also receive free prescriptions and eye care? ABI is a condition which can very often require people to take various types of medication for life; some people who have sustained ABI also have problems with their vision which will require ongoing medical treatment and support. Given that ABI results in restricted mobility and also can have an impact on core body temperature particularly if the pituitary gland has been damaged, it would also seem appropriate that people in receipt of DLA or PIP are automatically entitled to the winter fuel allowance.
PIP Assessments and Delivery
The Independent Assessors
36. As already mentioned we are extremely concerned about the lack of expertise of the assessors for PIP. We would like to see only clinicians and medical staff with specialist knowledge of acquired brain injury assessing people in this group. We are certain that many medical professionals, such as General Practioner’s, have very little or absolutely no knowledge whatsoever of this complex condition, and of the cognitive, psychological and behavioural effects, which are often not visible.
37. It is also vital that the opinions and statements from treating medical professionals and/or family members are taken into account, as in the case of ABI in particular, many people lack insight into their own condition. This will make them unable to answer questions accurately, resulting in a high risk of an inappropriate award being made. In all cases we would recommend that the person being assessed is urged to bring a carer, family member, and friend or advocate who can assist in the assessment process.
38. We are also extremely concerned about the level of independence of the assessors, and whether they will be given targets for rejecting claimants given the proposed 20% reduction in claims.
Assessing Brain Injury Accurately
39. While we welcome the addition of a number of criteria that take cognitive deficits into account, we feel this should go further to take account of the many behavioural and psychological effects of brain injury, plus the more complex cognitive problems people experience.
40. Fatigue is one of the most debilitating yet hidden effects of brain injury, and yet there is no mention of this in the draft criteria. As an example, given the varying picture this symptom creates, an assessor could visit a claimant in the morning and make a judgment based on their ability at this time, unaware of the serious impact that fatigue levels later in the day could have on their performance.
41. This applies to the common symptoms of poor motivation and lack of insight too, so for example a person might be able perform a task, but would have no motivation to do it, or insight into why they should. How will the Government ensure that this is taken into account in order to protect the most vulnerable people in our society?
42. While we appreciate that many symptoms of brain injury are taken into account much more than with DLA, we still feel the criteria will leave large gaps in the full assessment of disability. For example, greater emphasis is needed on the effects of communication problems caused by cognitive functional deficits, and also the complex and wide ranging memory problems that result from a brain injury.
43. We can see a large gap in the criteria where the basic activities of daily living are not being assessed. This includes sleeping, breathing, relationships and sexuality, none of which are being considered anywhere in the proposals.
44. There is also an important category missing from the criteria—an individual’s ability to maintain positive physical and mental health. This needs to take account of their ability to use services such as dentistry, opticians, chiropodists, counselling and local community mental health/acquired brain injury teams.
45. It is also important that the Government is sensitive to the stress that a benefits assessment can place on claimants; particularly in the case of brain injury where focusing on the negative aspects of a trauma can have serious psychological consequences, possibly leading to exacerbation of symptoms and/or additional behavioural problems.
Safeguarding
46. We do not feel that the safeguarding agenda is implicit throughout the activities to be assessed. While the benefit assesses a claimant’s ability to perform basic everyday tasks, it makes no mention of their ability to protect themselves against all forms of exploitation, for instance from financial, physical, psychological and sexual abuse.
DLA/PIP—Children and Adults Over the State Pension Age
47. Headway provides support to adults with an ABI and therefore do not have the level of expertise or knowledge to respond to the question regarding children.
48. We would however comment on the proposal for people over state pension age and argue that age should not be a factor in the PIP assessment process. Acquired brain injury has a devastating effect and access to disability benefits should not be discriminatory.
Communicating the Reform Proposals
49. People who are currently in receipt of DLA will have an understanding of the eligibility of the new benefit and prior to the introduction of Personal Independence Payment they should be advised of the changes in the assessment process and levels of award. Benefits advice should be available in GP surgeries, hospitals and social services departments, especially when people have sustained an injury which is likely to leave them unable to return to work, or if an injury will result in the person requiring ongoing support and care. Hospital Social Workers, where accessible, should also be able to signpost people onto benefits advice if they themselves are not able to provide it. Benefits advice and support should also be included in hospital discharge plans, if the person has sustained an injury which will result in a long term medical condition such as an ABI. There should be clear referral processes established in neurological wards of hospitals, as these patients are the most likely to be unable to work and will have to rely on DLA (PIP). Patients, and more often than not, carers, should be given contact details of independent benefit advisors in their local area. One suggestion which would also assist this process would be to hold benefit surgeries periodically within these specialist hospitals.
50. The difficulty in providing information as to who is likely to get the benefit results from the inconsistencies in awards.
51. All benefit information must be written in plain English language, with clear information about what the qualifying conditions are and identifying the components parts to the benefit, and the levels of award. Definitions of mobility and care should also be given in the information with examples provided.
52. Better training for the people who administer the benefits on what’s available and on different conditions (as well as where to access expertise and advice on specific conditions). TV advertising, information left in hospitals, CAB, community projects (Third Sector organisations), libraries etc.
Transitional Arrangements
53. We would propose that people who are currently in receipt of DLA should have their case reviewed without the need to attend a re-assessment. The review should focus on whether or not the condition is recognised as a long term (disabling) condition and unlikely to result in significant improvements. Expert advice should be sought from medical professionals ie neurologists, on the likelihood of there having been major changes to peoples level of disability and we would recommend that as an ABI is recognised as a long term condition then these claimants should automatically be transferred to PIP.
54. New claimants should go through the assessment process to establish if they have a recognised long term condition, and, if so, then a paper based assessment should be completed. For claimants who have a fluctuating medical condition an assessment might be appropriate, but only to ensure that a fair award is given based on their “worst day”.
The Tendering of DLA/PIP Assessment Contracts
55. We would recommend that the assessment contract include a penalty clause for flawed assessments. There is a volume of evidence
56. Currently ATOS are paid for what can only be viewed as “flawed or incorrect” assessments which incur additional costs, as these cases are then referred to an independent appeal panel. Given that the replacement for Disability Living Allowance (PIP) aims to cut the amount of PIP paid to working age adults by 20%, it is our view that if 80% of assessments are flawed, the introduction of penalty clauses would assist in improving accuracy whilst decreasing unnecessary costs. The other alternative would be to withhold or remove payment for flawed assessments, and these savings then going towards assisting the Government in meeting the budget deficit, rather than cutting the payment of PIP to disabled people.
57. From our consultation on this issue, we know that public confidence in the current and proposed assessment process is extremely low and is in the main due to the high number of claims which are referred to the appeal panel, and as previously mentioned 80% of these cases will be upheld.
58. Applying the above suggestions would result in the reduction in the number of flawed assessments, whilst also greatly reducing the number of appeals required, and this in turn would go some way to restoring public confidence in the assessment process. If the assessment process resulted in more accurate awards this would also greatly reduce the level of stress and worry that claimants and their carers have to face.
Conclusion
59. In assessing the draft criteria, many of our service users who currently claim DLA felt that reducing the assessment to just a few tasks left out many of the essential daily activities that they are unable to perform.
60. A stated principle of PIP was the process being more active and enabling, however this does not seem to be the case within the proposed assessment criteria itself. Headway does not feel confident that the numerous cognitive, emotional, psychological and behavioural effects of brain injury are being taken into account across the 11 proposed activities. For example they do not take account of problem solving, fatigue, memory problems, comprehension and cognition, anger, sexual problems, sleep disorders and safeguarding issues.
61. Headway service users involved in this consultation spoke about the growing stress and fear of the unknown and the thought that genuine cases will lose out. Respondents also felt that their input will not play a significant part in influencing the draft assessment criteria consultation, something which clearly shows the lack of confidence in the whole process. We would be particularly interested to learn how the Government will judge the success of this new benefit, and under what criteria it will be judged against?
62. We believe that if the Government is to achieve its aim of producing a fairer benefit to help vulnerable people access greater independence, it is vital that, the issues raised within this consultation response are taken fully into account.
2 September 2011