A response from Headway – the brain injury association
The Scottish Government made a commitment to work with people across Scotland to determine how best to use the new social security powers which will be devolved by the Scotland Act 2016. The consultation includes questions about how disability-related benefits should be assessed and delivered to claimants in Scotland.
The document outlines Headway’s responses to questions asked that are of relevance to the charity and people affected by acquired brain injury.
Headway is the UK-wide charity that works to improve life after brain injury and is registered with Office of the Scottish Regulator (charity no. SC 039992). In addition to a range of UK-wide advice and support services, a network of Headway groups and branches across Scotland provides rehabilitation and social support to individuals, families and carers.
Who should deliver social security assessments for disability-related benefits?
Headway has consistently called for disability-related benefits assessments to be delivered by medical professionals with specialist knowledge of the condition presented by the claimants. For brain injury claimants, this should mean neuropsychologists or neurologists.
A survey conducted by Headway in 2012 found that 82% of brain injury survivors undertaking the Work Capability Assessment (WCA) felt that the assessor did not understand brain injury. A replication of this survey in 2015 found this situation unchanged, with 87% of respondents finding that there was still a lack of understanding about brain injury from assessors. This is despite numerous reviews of the WCA and ‘improvements’ being made to the assessment.
The findings reflect the hidden nature of many effects of brain injury. Many brain injury survivors may not have an apparent physical injury, but still have less visible physical problems such as fatigue and headaches, as well as a complex range of cognitive, emotional, behavioural difficulties.
It is imperative that assessors have the appropriate level of understanding and the expertise to conduct these assessments fairly and sensitively.
This would ensure that vulnerable people can access the benefits they need in order have a degree of independence, reducing the stress and anxiety of having to go through a lengthy appeals process. It is also worth noting that the majority of such appeals are successful, suggesting improvements must be made to the initial assessment process.
Should any aspect of social security be delivered by others, such as the third sector, not-for-profit organisations, social enterprises or the private sector?
Charities that work day-in, day-out with those that rely on their expertise and support can have an important role to play in supporting the process of ensuring people have access to the help they need.
Headway provides invaluable support to brain injury survivors across Scotland through a network of 15 groups, aided by dedicated network support staff. Over the past 37 years since its formation in 1979, the charity has built-up a wealth of experience and expertise in supporting people affected by brain injury, many of whom rely on disability benefits.
The extent to which Headway groups in Scotland might be able to be involved with supporting the delivery of social security in the country, for example as lay assessors, is unclear at this stage; many are struggling to cope with the financial pressures of cuts to funding.
However, their experience and expertise should be valued and sought in order to reduce the number of people who are unfairly denied access to the vital benefits they so desperately need.
Please explain your views (both positive and negative) on personal independence payment (PIP).
PIP is a vital benefit that many brain injury survivors rely on. However, many Headway service users have reported to the charity that the assessments do not take account the ongoing needs of brain injury survivors.
The fluctuating nature of the effects of brain injury means that some days will be better than others for those affected. The assessment for PIP is not sensitive to this and only takes into account performance at one point in time.
Additionally, many people with brain injury lack insight into how their condition affects them, and may need help in completing the PIP application form or attending an assessment.
Many people reported that their assessment gave an inaccurate indication of their overall condition and they were subsequently forced to appeal. The high success rate of appeals demonstrates the serious failings of the initial assessment process.
PIP does not take into account the fact that for many people with brain injury, their condition will not improve over time. Recently, the UK government announced plans for people with life-long conditions should not be forced to undergo repeated reassessments for Employment and Support Allowance (ESA). However, it is yet to clarify whether or not claimants with acquired brain injury would be covered under this plan.
The Scottish government has an opportunity to ensure that brain injury survivors whose conditions are unlikely to improve significantly over time are spared the stress and unnecessary anguish of repeated assessments for both ESA and PIP.
How should the new Scottish social security system operate in terms of a person applying for a disability-related benefit?
Greater support should be given to help claimants with understanding and completing forms, for instance through the provision of social workers or a benefits enquiry line.
Forms should be shorter and more concise, where possible, to reduce any stress, which can exacerbate the effects of brain injury.
Supplementary documents should be provided with benefits forms to provide clarity on the information required.
Accurate timescales for processing forms should be clearly indicated and claimants should be kept up-to-date throughout the process.
Under the Accessible Information Standard, provision for alternative methods of applying for benefits should be introduced, such as postal forms, electronic forms, and telephone applications to accommodate for the varying needs of brain injury survivors.
Families and carers should be offered a chance to provide input where a brain injury survivor may lack capacity or insight.
How should the new Scottish social security system operate in terms of the eligibility criteria set for the benefit?
The eligibility criteria should be sensitive enough to recognise that, although a fluctuating condition for some people, brain injury can leave others permanently disabled in a variety of ways, some of which may not be visually apparent. Some effects of brain injury, such as chronic fatigue, headaches, problems with concentration and attention and emotional problems, can impact a person’s ability to work or undertake daily activities, but be hidden.
It should be made clear at every stage during the application process that in order to be judged as able to complete a task, a person must be able to do it safely, reliably, repeatedly and in a timely manner. At present, many vulnerable people are failing due to a lack of understanding of this key point.
Importantly, a criterion is only as good as the knowledge and understanding of the person judging people against it. We therefore repeat the need for all assessments for brain injury claimants to be conducted by clinicians with neurological expertise.
How should the new Scottish social security system operate in terms of the assessment/consideration of the application and the person’s disability and/or health condition?
For all applications made by a person with brain injury, it should be assumed that they may have difficulties with communicating, finding words or articulating the extent of how their brain injury has affected them. Therefore it should be recognised that simple language or answers provided on an application form does not necessarily reflect minimal support requirements.
Furthermore, a brain injury survivor may lack insight into the nature of their problems, and fail to provide as much information as is needed to make a fair and sensitive decision. For this reason, applications should be conducted by healthcare professionals with expertise in brain injury and its effects.
The short period of time allocated to assessments will not necessarily reflect how the brain injury survivor is impacted on a day-to-day basis and assessors should be mindful of this.
Many brain injury survivors find the assessment process mentally and physically draining, and options should be given as to where to hold the assessment, as well as breaks provided if required by the survivor.
Assessors should be sensitive to the emotional impact that undertaking an assessment can have on the brain injury survivor. Families, friends and carers should be invited along to the assessment if support or insight is required, and given the opportunity to offer input.
It is imperative that applications and assessments are conducted correctly in order to minimise the number of people who are required to undergo an appeals process to access benefits that they are entitled to. Indeed, it was found in September 2015 that the success rate of PIP and ESA appeals has been increasing. This reflects a dire need for assessments to be conducted appropriately the first time round rather than relying on an appeals process, which can be costly for the state and distressing for applicants.
How should the new Scottish social security system operate in terms the provision of entitlements and awards (at present cash payments and the option of the Motability Scheme)?
The passporting is an essential part of PIP which allows it to guarantee people’s freedom. Motability is an extremely effective scheme, and this model, where people can exchange their payment for a service, could potentially be explored for other areas.
It is imperative that people retain choice over how their benefit is spent however, and there must be no suggestion of requiring people to use their PIP for services that local authorities and the NHS have a statutory duty to provide.
How should the new Scottish social security system operate in terms of the review and appeal process where a person isn’t content with the outcome?
A clear appeals process should be outlined in letters received, with timescales of expected outcomes provided.
We also have serious concerns about the length of time between initial decision and appeal hearings, particularly as payments are stopped or reduced during this period. This can leave many genuine claimants without this vital income, or at risk of losing their Motability car.
Claimants in receipt of additional passported benefits, i.e. housing benefits or Motability, are placed at risk of becoming homeless or at the very least accumulating rent and Council Tax arrears as these benefits are reduced or withdrawn during the appeal process for PIP.
Benefits should continue to be paid pending appeal. If more assessments are right first time, and the waiting lists for tribunals are significantly shorter, this will put only a small amount of extra pressure on the PIP budget, which would be more than offset by the savings in administering the appeals process.
We want to make sure that the process is clear and accessible from start to finish, and that people claiming devolved benefits understand how and when their claim will be dealt with. With this in mind, do you think that timescales should be set for applications, assessments and decision-making?
Clear timescales for claims, assessments, decisions and appeals would make the system clearer and more accessible for many people. It would end the uncertainty over the benefit, and put firm targets on the DWP to deliver a more efficient and predictable benefits system.
As with all timescales, there should be flexibility where appropriate, for instance when those with severe disability need extra time and support to make a claim.
What evidence and information, if any, should be required to support an application for a Scottish benefit?
Where possible, medical records should be consulted to gain information about any treatment, scans or assessments a brain injury survivor claimant has had to undergo. However, decision makers should be mindful of the fact that GPs may sometimes fail to recognise the full effects of brain injury.
Furthermore, although a scan such as CT or MRI may be performed, small and diffuse areas of damage to the brain are often not detected on these scans. Therefore scans should not be the sole determinant of whether a person has a brain injury, and should not be the only form of evidence relied upon for a Scottish benefit application.
Evidence from any neuropsychological tests conducted should be used where available, as these directly assess the impact of brain injury and will often provide an accurate reflection of the emotional, behavioural and cognitive impact of brain injury that should be factored in when considering the applicant’s eligibility.
If appropriate evidence is not available, it should be commissioned to ensure a level playing field for claimants who may have ‘slipped through the net’ in their medical care.
Families and carers should be consulted to provide further anecdotal evidence to support an application.
Who should be responsible for requesting this information and who should be responsible for providing it?
Whoever is managing the claim should be requesting evidence from doctors.
At present, if claimants request supporting letters from their GP they often have to pay a charge for such letters, which is unfair and discriminates against those on low incomes. The responsibility for acquiring support information should lie with the DWP assessors.
Should the individual be asked to give their consent (Note: consent must be freely given, specific and informed) to allow access to their personal information, including medical records, in the interests of simplifying and speeding up the application process and/or reducing the need for appeals due to lack of evidence?
Yes, consent should be sought from the individual where capacity to make decisions on financial and health matter is intact.
It is important to consider that after brain injury some people may struggle with making decisions, so requests for consent to access information should be done sensitively and with appropriate timescales accommodating for the brain injury survivor’s needs.
Do you think that the impact of a person’s impairment or disability is the best way to determine entitlement to the benefits? If yes, which aspects of an individual’s life should the criteria cover and why?
Yes, the impact of the person’s impairment is the best way to determine entitlement to benefits.
As the effects and consequences of brain injury vary so vastly between people, it is important to observe the impact that the injury has had on each individual’s life and make a decision on this basis. For instance, two people who have the same kind of injury in a similar part of the brain may have very different outcomes to the injury, with one person managing to continue working and making a considerably swift recovery, whilst the other is completely unable to return to work and struggles with their day-to-day living.
The criteria should cover ability to work or participate in education, ability to engage in day-to-day activities, ability to engage in social activities on an appropriate basis and impact of the injury on carers or family.
What do you think are the advantages and disadvantages of automatic entitlement?
A benefit is that it will alleviate the stress that falls on the most disabled individuals who would struggle to even make an application. The eligibility criteria should include brain injury, depending on how the injury has affected the individual. This is because whilst some people may improve after brain injury, others will have life-long disabilities, or particularly severe care needs following their injury.
The disadvantage to this is that automatic entitlement may not be flexible enough to accommodate for a brain injury survivor’s changing needs. For instance, some effects of brain injury may get better over time, whilst other effects worsen.
Headway welcomes the call to have specific input from medical professionals and from people with direct experience of conditions for automatic entitlement, and highlights the importance of consulting neurologists or neuropsychologists for input for brain injury survivors.
For those people that may require a face-to-face assessment, who do you think should deliver the assessments and how? For example, private organisation, not-for-profit organisation, public sector body or professional from health or social care.
Face-to-face assessments for brain injury survivor applicants should be conducted by medical professionals with an expertise in brain injury, such as neurologists and neuropsychologists.
There may also be merit in consulting and involving social workers with experience in brain injury, in order to identify the day-to-day and practical life impairments that the brain injury survivor may typically have that entitles them to the benefit.
A claimant should be able to bring a support worker or relative along to the assessment as well.
Headway would support assessments being delivered by not for profit organisations rather than the private sector.
What are the advantages and disadvantages of different types of assessments e.g. paper based, face to face, telephone?
The advantage of paper-based assessments is that it enables applicants to take their time with offering responses, rather than needing to provide a prompt response over the telephone, which is a disadvantage of telephone-based assessments.
However, the disadvantage of paper-based assessments is that it does not offer the opportunity of inspecting behaviour that would otherwise contribute to the overall decision.
The amount of information to be gained from a paper-based assessment is limited and does not offer the full opportunity to thoroughly explore and examine how the brain injury survivor has been impacted by the injury.
The advantage of face-to-face assessments is that they offer a chance for this level of exploration, if done sensitively and empathetically – the right questions are asked. This is something on which Headway would be willing to advise.
At present, the disadvantage of face-to-face assessments is that they are often done with little sensitivity due to a lack of understanding of brain injury.
A further disadvantage of face-to-face assessments is that they only take into consideration the brain injury survivor’s performance in a constrained moment in time rather than considering how the brain injury survivor’s life is changed overall.
There is therefore a need to reform the face-to-face assessment process. Telephone assessments may be of use to some claimants for whom travelling to an assessment centre is difficult, but does not accommodate for brain injury survivors who may have communication problems or difficulties with articulating the impact that brain injury has had on their life.
If the individual’s condition or circumstances are unlikely to change, should they have to be re-assessed?
No, reassessments are stressful and upsetting for many survivors. If their condition in unlikely to change then they should not be made to undergo a potentially distressing reassessment.
Headway has welcomed the proposal to scrap periodical reassessments for ESA claimants with severe conditions made by the Work and Pensions Secretary in October 2016, and calls for this to be applied where appropriate to PIP claimants.
What evidence do you think would be required to determine that a person's condition is not likely to change?
Brain scans, such as CT and MRI; however, sometimes brain injury is not detected by a scanner, and so this should not be the only evidence used to determine the prognosis of a person’s condition.
Neuropsychological assessments and neurologist reports should be required where a claimant exhibits cognitive impairment. Additional medical reports, such as hospital reports and rehabilitation reports, should be consulted as well.
Who should provide that evidence?
It is notoriously difficult to provide a prognosis for brain injury, as the survivor’s recovery depends on a number of factors such as individual differences, diagnosis and typical progression of condition and the amount of treatment and rehabilitation received.
Therefore evidence for prognoses should be provided by medical experts such as neurologists and neuropsychologists, who have the appropriate medical background and expertise in brain injury.
Do you think people should be offered the choice of spending some of their benefit for alternative support, such as reduced energy tariffs or adaptations to their homes?
People should be offered the opportunity to spend some of their benefits on these things, as these may be particular areas of expenditure concern for some brain injury survivors and their families.
Would a one-off, lump sum payment be more appropriate than regular payments in some situations?
In some circumstances, brain injury survivors may benefit from one-off payments to enable the purchase of equipment that may aid their mobility and daily living.
However, some of these people may not currently meet the threshold for claiming PIP because of the way the points-based assessment is structured.
Therefore, in some circumstances, a one-off payment may be appropriate for those who may otherwise be denied access to much-needed support.
What would be the advantages and disadvantages of such an approach?
For these people who experience disability but are excluded from the benefits system, this may give them the ability to buy essential equipment or adaptations that could improve their independence.
However, a one-off payment should never be used to replace the monthly payment for people who meet the current criteria.
Should the new Scottish social security system continue to include the use of mobility allowance to lease cars, wheelchairs or scooters?
Yes, the scheme is of great benefit to some brain injury survivors who have problems with mobility and must be protected. Removing access to these services would seriously impact people’s ability to live an independent life.
How could disability benefits work more effectively with other services at national and local level assuming that legislation allows for this e.g. with health and social care, professionals supporting families with a disabled child.
Better integration between benefits and social care services could help reduce the need for repeated and very similar assessments. People receiving a high level of PIP or social care could be fast-tracked to receive appropriate services and payments.
The views and expertise of Headway groups and branches in Scotland might also be considered in regard to claimants who are supported by such services.
Do you agree with the Scottish Governments approach to developing a Scottish carers benefit?
Yes – it is vital that more support is given to carers. Although still low, we welcome the proposed increase to Carers Allowance, which will help to alleviate the financial concerns of many people who receive this benefit.
A study by Headway found that carers of people with brain injury are failing to get adequate support from their local health care providers and social services departments, causing long-term mental and physical health problems.
The study also found that carers are struggling to cope financially, with 71% of respondents have experienced a deterioration in their financial situation since commencing their caring duties; 73% of brain injury carers stating they do not receive a carer's allowance; and 78% of those that do receive a carer's allowance stating they are still worse off financially.
Unless they are better supported, more and more carers will suffer from serious medical complaints, adding to the future burden on local health and social care services. It will also reduce the ability of carers to provide support to their loved ones, returning the responsibility of care back to the state.Back