Written evidence from Disability Agenda Scotland (PEA0414)

About DAS[1]

The members of DAS are Action on Hearing Loss Scotland, Capability Scotland, ENABLE Scotland, RNIB Scotland, SAMH (Scottish Association for Mental Health) and Sense Scotland. DAS focuses on the issues that will have the most impact for disabled people in Scotland. Together our experience, expertise and interests cover physical disability, sensory impairment, learning disability, communication support needs and mental health. We work closely with the thousands of disabled children, young people and adults, families and carers involved with the member organisations.

DAS welcomes the Work and Pensions Select Committee’s inquiry into the effectiveness of assessment processes used to determine eligibility for Personal Independence Payments (PIP) and Employment and Support Allowance (ESA). We would be pleased to provide further written or oral evidence as required.

The need for suitable disability benefits

The level of poverty among particular groups, such as disabled people, is very high – 39% of people living in poverty have at least one disabled person in their household[2]. One reason for this is the extra financial costs of living with disability such as heating, laundry and transport costs and care and therapy charges which, taken together, can averaging as much as £550 per month[3]. A recent report found that 39% of people in poverty are in a household with at least one disabled person[4]. A ‘cut price’ welfare system is a false economy with the loss experienced, not only by disabled people themselves, but by society as a whole in the form of lost talent, tax revenues, added pressure on other public services, especially health, as well as other costs of inequality.

Devolution to Scottish Government of disability benefits

Disability benefits are in the process of being devolved to Scotland, with other benefits, such as ESA and Universal Credit remaining reserved. The system is already complex and there will be two systems, with different expectations and cultures. There will therefore need to be ongoing coordination with Westminster and reserved powers and benefits.

Assessors and assessments

Devolution of disability benefits is expected to take around three years. The existing PIP application and assessment process is one of the issues which people raise with DAS the most and it is an issue which Westminster needs to address. PIP has been replacing DLA for people of working age. Problems with PIP are increasing stress and anxiety and often preventing people from getting the support they need[5],[6].

We support the Disability Benefit Consortium (DBC)’s assessment that PIP is not fit-for-purpose in its current form, and requires significant, urgent improvement to restore disabled people’s faith in the system, including:

• Assessment process: The DWP immediately introduces a ‘paper’ new-claim route, which is not time-limited to four weeks and a simplified PIP2 form to enable people to claim PIP more easily.
• Evidence gathering: An independent review of evidence gathering processes, to ensure that medical professionals are clear on how to provide supporting evidence and that the duties and responsibility of the assessor, the Department and claimant are clear and observed. In order to restore faith in the process, assessors should be obligated to review all supporting evidence provided by a claimant.
• Assessments: A root and branch review of the PIP assessment criteria should be urgently conducted, with meaningful involvement from disabled people, to ensure criteria are set fairly and truly reflect the extra costs that people face. In particular, the 20m rule for enhanced mobility support and rules setting out how fluctuation is considered should be amended. Direct responsibility from the DWP should be established for assessment quality and an urgent quality improvement plan published to ensure both assessment companies’ are conducting assessments consistently and to a high standard as part of contract renegotiations.
• Appeals and awards: Pay PIP claimants an ‘assessment rate’ during lengthy appeals processes, as is the case with Employment and Support Allowance, to enable them to maintain their independence. Introduce indefinite PIP awards for people with the most severe, complex conditions, which have no prospect of improvement. If reassessments absolutely must be undertaken because additional support may be available, these should happen ‘on paper’ through a call or a conversation with a health professional.

Through focus groups and a survey of 60 service users and staff, DAS member Scottish Association for Mental Health (SAMH) identified and analysed similar issues with PIP[7], which are supported by the findings of other DAS members:

• The application form (PIP2) and face to face medical assessment did not adequately assess the impact of mental health, with a focus on physical functionality
• Claimants felt disbelieved and at times stigmatised by assessors
• There was an overwhelming breakdown of trust in the application and assessment process
• Claimants’ rights were not communicated adequately
• The experience of assessment had a negative and often long term impact on claimants’ mental health
• The quality of evidence gathering and medical evidence

Many DAS members and service users have not yet migrated from DLA to PIP. For those who had, some people had found PIP to be favourable, for instance if they are registered blind, but less so, if they are visually impaired, for example[8].

The current system of regular re-assessment is very stressful and unnecessary when someone has a condition that is very unlikely to change, such as a learning disability, is registered blind or have some types of physical disabilities, for instance.

Consideration should be given to what could be done to simplify the procedures including the length of application forms (for example, the current PIP forms are 50 pages long). Some service users have also reported that the forms were confusing and focused upon issues that were not relevant to them, such as physical impairments, lacking relevance to their mental health, for instance. The majority of questions cover factors such as ability to dress, mobility, preparation of food and toileting with only a limited number asking directly about cognitive functions.  We want to see an emphasis placed on conducting assessments, where they are necessary, locally.

The assessment process could be improved if people were made aware of their options at the outset, including being able to take someone with them; that their companion can take an active part in the assessment; and assessments can be undertaken in their home.

Under DLA, those with lower levels of care requirements could still be entitled to the lower rate of the care component of DLA. Under PIP, this is no longer possible with the standard and enhanced rates being equivalent to middle/high rate DLA. In practice, this can make it much more difficult for those with less profound care and support needs to access the benefit leaving them without proper support. We call on the UK Government to consider two options to resolve this:

• Option 1: introduce a lower rate of the daily living component where a claim can be accepted with a lower points score than the current threshold or by satisfying certain activities (i.e. entitlement via the cooking activity under PIP would be comparable to the cooking test in DLA).
• Option 2: Introduce a regulation similar to that which exists in ESA (Regulation 29(2)(b) the exceptional circumstances regulations) where those who do not meet the points threshold could still be entitled to an award if they met “exceptional circumstances”. We would suggest that exceptional circumstances would be given a definition similar to “would otherwise be unable to live independently without support”.

The assessment process could be improved if people had a legal right to support from independent advocacy. The Scottish Government funded a Welfare Advocacy Pilot Project between March 2015 and August 2016, which found that advocacy support throughout the assessment process of both ESA and PIP :

•              Reduced the stress and anxiety for applicants

•              Increased applicants’ confidence about communicating and their understanding of the process

•              positively impacted the behaviour of assessors

•              Increased the accuracy of assessment outcomes.

Nine out of ten of those participating received a positive result from their claim.

The Mental Health (Care and Treatment) (Scotland) Act 2003, which provides that everyone with a mental health problem in Scotland is entitled to advocacy, is a precedent for this.[9] The benefits of advocacy are clear but provision must be adequately resourced.

Majority of the time rule: Under PIP, a claimant must require support with an activity for the majority of the time. This is a departure from DLA where a more rounded picture of the claimant’s life could be used to decide on entitlement. The impact of a learning disability, for instance, can often be complex, meaning that the majority of the time rule places some, such as significant numbers of people with learning disabilities at risk of no award as they only require support in specific areas of their life.

DAS does not feel that the PIP qualification criteria provide an accurate calibration process for young people reaching 16. The PIP test looks at areas such as cooking, budgeting and social interaction. These are areas where many young people still require assistance and/or they may not do so at all (e.g. budgeting if living with parents). This means that the test being applied is often hypothetical and therefore unlikely to produce accurate results. DAS suggests the age for transitioning from DLA to PIP be moved from 16 to 21. This would have the benefit of postponing an area of concern for young people with a disability and their families while they are likely to also be transitioning in areas such as social work involvement, education and/or health services.

Changes to PIP regulations

Earlier this year, the UK Government made changes to PIP. In December 2016, the Upper Tribunal court ruled that people who find it difficult to leave the house because of anxiety, panic attacks, and other mental health problems should be able to receive the higher rate of PIP. The tribunal also said that claimants who needed support to take medication should be assessed in the same way as those managing therapies such as dialysis at home. In February 2017, the Government brought forward legislation that stopped the court’s judgement from coming into effect. The Government’s changes to PIP could affect over 160,000[10] people both in and out of work, who have extra costs related to their disability. The regulations are a clear diversion from the stated aims of the legislation and we call for the changes to be reversed.

Mandatory Reconsideration and Appeals

DAS suggests that some of the perceived problems could be resolved by improving the standard of decision making. Nearly two-thirds of appeals over PIP decisions are successful at tribunal[11]. We have been told by many people we work with and support that they just want clarity and consistency in decision making. The high number of successful appeals demonstrates that decision making could be improved. We recognise that not everyone who applies for a benefit may be eligible for it but criteria and decision making needs to be clearer and consistent, with some explanation provided to the claimant as to the rationale for the outcome of their application. DAS believes that a number of improvements and efficiencies could be made within the system, which would benefit applicants but also save money.  For instance, by reducing the number of face-to-face assessments for Personal Independence Payments (PIP) and improving decision making. 

We are concerned and disappointed that, unlike ESA, PIP claimants cannot receive an ‘assessment rate’ or equivalent while they appeal their decision. Given that the Social Security and Child Support tribunal takes around 20 weeks to hear cases[12], we feel this is an unacceptable length of time to ask disabled people to go without any financial support.

Employment Support Allowance (ESA)

We remain opposed to against £30 a week cut to Employment and Support Allowance for those in the Work Related Activity Group (ESA WRAG). The Welfare Reform and Work Act 2016 cut ESA for those in the ESA WRAG from £102.15 a week to £73.10. This £30 a week cut would has applied to new claimants since April 2017. Disabled people in this group have been found currently unfit for work, albeit can take steps to move towards the work place. Some will move closer and into work, others may experience a deterioration in their condition and move into the ESA support group where they are not expected to prepare for work. Currently there are 444,740 disabled people in the UK in the ESA WRAG. The Government has said it believes the £30 is disincentivising disabled people from working. No robust evidence was presented to back up this assertion, and the Work and Pensions Committee described the Government’s evidence as "ambiguous at best". Furthermore, a perverse disincentive has been created. People who get into work and then lose their job after three months will be treated as new claimants, and thus receive £30 a week less.

Should the options for reforming the Work Capability Assessment mooted in the Government’s Improving Lives green paper be taken forward?

DAS  does not think the proposals set out in the ‘Work, Health and Disability: Improving Lives’ Green Paper address the most urgent improvements needed to the Work Capability Assessment (WCA) and we have concerns about exactly how these proposals could be taken forward.  The WCA is continuing to fail to adequately capture the barriers many disabled people face to employment and is too often leaving them without support.  The continuing high rate of successful appeals highlights that the assessment is struggling to make the right decision first time around. According to the latest tribunal statistics, 68% of appeals are successful[13].  The findings from the DBC survey also indicate significant on-going problems with the assessment’s accuracy and its ability to judge work capability.

We were disappointed that the Green Paper offered no suggestions for the reform of the assessment itself but instead focused on structural changes to the benefit – specifically separating eligibility for financial and employment support. To address the on-going issues with the WCA, the priority must be fundamental reform of the content of the assessment.  Any assessment for support must be able to capture an accurate picture of the barriers disabled people face. This should include understanding not just the physical or mental conditions that make it difficult for someone to work, but also other barriers to work such as housing issues, debt, relationship breakdown, lack of access to treatment and employer stigma.

We hope a review would help to ensure that the content and underpinning principles of any assessment accurately capture the barriers disabled people face and are based on a robust evidence base and understanding of their experiences. The DBC has never seen any of the evidence underpinning the current WCA and weaknesses in its design have been highlighted, including by the Year 4 Independent Review.[14]

The Government should undertake fundamental reform of the WCA. Design of a new assessment should be carried out with the involvement of disabled people’s organisations and disability charities. The criteria and descriptors of any new assessment must be based on robust evidence and data

November 2017