Independent Review of Adult Disability Payment: final report

A Better Future

The Scottish Government priority to date has been the safe and secure transition to a devolved system of disability assistance. It is now therefore, when almost all PIP recipients have had their cases transferred to Adult Disability Payment, that attention is focused on addressing some of the anomalies and challenges inherent in the current system.

Modernisation

The current activities and descriptors for Adult Disability Payment are identical to those used for PIP, with some changes having been made to reflect case law or to make their meaning clearer. The PIP activities and descriptors were designed and formalised in 2012 but have not been the focus of a review since.

“These are a direct copy from PIP and contain a lot of ambiguity … Modern daily living has changed a lot since these were put together. There should be a complete review." – Individual, response to the Independent Review of Adult Disability Payment Consultation^[220]

Modern-day living, in particular the advancement of technology has reshaped almost every aspect of human life. From setting alarms on smart devices to the everyday use of assistive technology, our daily routines now intertwine seamlessly with digital innovations. These transformations extend far beyond mere convenience and for many disabled people they have fundamentally altered how they communicate, work, and live. For example, the closure of so many local bank branches and the move to an online banking experience. For some disabled people this is a huge advantage and for others who cannot manage a bank account or be responsible for financial transactions such as paying bills, the move to everything being done in an App can further disable them in society.

Consideration is required with regards to both the ‘digital divide’ and how a disability or condition may make the use of everyday technology progressively more difficult. For example, when discussing the potential benefits of an online portal to track progress of an Adult Disability Payment application or re-determination, a person from the Huntington’s Disease Association suggested that trackers being online would be challenging for people with Huntington’s disease. As the disease progresses they may no longer be able to use online systems. Some members of the Neurological Alliance stated that ‘increasing use of the internet by authorities can be challenging for people with neurological and mental health conditions and this needs to be recognised’.^[221]

One RNIB Scotland client suggested that the use of technology to assist blind and partially sighted people must be considered carefully. Whilst some visually impaired people might readily use mobile phone technology and navigation software to plan and follow a route, the level of use will vary considerably among people with sight loss. The availability of technology and other aids for personal use to plan and follow journeys may not be useful for every visually impaired individual.

Technology is an obvious consideration in terms of modernisation and relevance. However, the most prevalent theme within the 'daily living activities' element of the online consultation was suggestions for other activities to be included in the activities and descriptors and become part of the decision-making process. Respondents to the online consultation suggested that sleep, the side effects of taking medication, the use of modern kitchen appliances, the use of Apps and managing unplanned events should be included. Calls were also made at engagement events for the eligibility criteria to be more aspirational and modernised. Participants suggested additional areas to include could be housekeeping, IT literacy, quality of life, communication support, filling in forms, and being part of a community. Several people asked that 'household cleaning' be included. They were concerned that even though people may be at risk if not cleaning their house, it is not currently considered in the eligibility criteria.

“This is something that is assessed for social care and having a clean and tidy house is deemed to be a basic necessity. 'In our experience, people often use the benefit to pay for cleaners. This can be a key issue for people with mental health conditions and can also be a good indication of the severity of a condition. Hoarding can have an impact on people’s ability to access their kitchen, bathroom etc. but there is no scope for that within the criteria.” – The Action Group & VOCAL & Grapevine at Lothian Centre for Inclusive Living, response to the Independent Review of Adult Disability Payment, review of the mobility component^[222]

There appears to be a general desire for changes to be made to the activities in the daily living component to ensure they gather relevant information about a wider range of conditions, consider the broader impacts of a condition on modern daily living, reflect people’s lived experience of real-life scenarios, and reduce confusion around fluctuating conditions.

Adopting a human rights social model of disability

Scotland has an opportunity to create a world-leading, rights-based system of social security for disabled people and this Review plays an important role in outlining ways in which the current eligibility criteria can be more reflective of a social model to better reflect the real-life experiences of disabled people in Scotland today. According to the human rights model of disability, disability is a social construct. It is the barriers within society, rather than personal impairments, that exclude disabled people.^[223] This model does not allow the exclusion of persons with disabilities from the community or from any area of life for any reason. The UNCRPD has noted that the failure to understand and implement the human rights model of disability is a major cause of discrimination and exclusion of persons with disabilities in society.

When considering alternative approaches to the current system, several respondents to the consultation advocated a move away from the medical model of disability. It was argued that moving away from this medicalised and deficit-based approach is necessary to help facilitate a more rights-based approach in Scotland.

The Scottish Government has committed to a human rights-based approach to social security which includes adopting this approach in the evolution of Adult Disability Payment and ensuring a system that focuses on removing the barriers to people’s rights to equal participation in society and independent living. As part of this shift to a human rights-based approach, it is important that social security for disabled people supports a person’s right to independent living.^[224]

Challenges associated with a deficit-based model or people not recognising or disclosing their difficulties was raised at multiple consultation events. Participants highlighted that people may find it difficult to think about their ‘worst day’ or open up about their difficulties. They may have developed coping strategies which means they do not always perceive themselves as having a disability or may interpret the questions differently than others due to the ambiguity of the questions. One example given was of people reporting that they can cook a simple meal, when in fact they need support to do this safely or are unable to prepare a nutritional meal. Another example is that an applicant may answer that they leave home when they only do this twice a year to visit their GP. The particular challenge for people with fluctuating conditions to recognise or convey their support needs was mentioned at a few events, given that their ability to do things might vary at different points in time.

The eligibility and decision-making criteria have been reviewed by me, and I have attempted in my recommendations to ensure the changes proposed reflect the social model of disability better and capture the rights of disabled people to independent living and equal participation in society. I have tried to consider the aspects of society that disable a person rather than focusing on the medical or functional aspects of a person’s impairment. The Independent Living movement in Scotland defines independent living as:

“all disabled people having the same freedom, choice, dignity and control as other citizens at home, at work and in the community. It does not necessarily mean living by yourself or fending for yourself. It means rights to practical assistance and support to participate in society and live an ordinary life.”^[225]

However, on their own, neither the medical or the social model is adequate, although both are valid. Disability is always an interaction between features of the person and features of the overall context in which the person lives. In other words, both medical and social responses are appropriate to the problems associated with disability; we cannot wholly reject either kind of intervention.^[226]

A better approach would be one that merges what is relevant in the medical and social models without making the mistake of reducing the holistic, personal life experience and real-life impact of a person’s condition or impairment on their daily life, to a set of inflexible deficit-based criteria.

For example, following the online consultation a perception was expressed by a few that the form or decision-making process was overly focused on those with physical disabilities.^[227] Respondents felt this made it harder for others to be awarded points, as the questions were not aligned to their situation. It was felt those with mental health problems would experience this, and a view raised in a few events was that the current eligibility criteria are not accurately capturing the needs of neurodivergent individuals or those diagnosed with mental health problems such as anorexia or bulimia. It was suggested during one engagement event that a mental health question should be included alongside each activity.

The deficit-based approach to determining eligibility for Adult Disability Payment is an issue that many people consider when deciding whether to apply. People living with long-term conditions told me that they try to live their lives ‘maximising what they can do’ but that the application process makes them focus on what they can’t do. This can have a devastating impact on their sense of self and mental wellbeing,

“Having to take the time to highlight issues and what you can’t do is depressing, demoralising and unfair.” – MS Society Scotland response to the Independent Review of Adult Disability Payment Call for Evidence^[228]

“It feels like you’re having to beg for help.” – Individual, MS Society Scotland response to the Independent Review of Adult Disability Payment Call for Evidence^[229]

At a few consultation events, participants highlighted the need to avoid using a deficit-based model in the questions on the application form, and instead introduce more questions grounded in a social model.

Parkinson’s UK Scotland, for example, would welcome a move away from the reductive task orientated system towards one that provides a much more person-centred approach to capturing how an individual’s condition affects them and the way that they are able to live their life in light of their conditions or impairments.^[230]

Without any doubt the current criteria and decision-making processes should be reviewed to further embrace a social model of disability, acknowledging that disability is a socially created problem and not an attribute of an individual. The existing eligibility criteria descriptors for Adult Disability Payment are more closely associated with the medical model of disability. For instance, descriptors that refer to people who ‘can stand and then move unaided more than 20 metres but no more than 50 metres either aided or unaided’ or ‘who need assistance to be able to wash either their hair or body below the waist’ are not consistent with a social model approach. While not a recommendation of how a decision-making process based on these criteria would look, Annex 1 provides an example of the difference viewing disability through a social model can make when framing questions.

An individualised decision-making model

Many disabled people are keen on a system where someone’s overarching need for help is looked at, rather than looking at specific activities. This is because some things don’t get captured by the current system or the current activities that are considered by case managers. There was a strong call for a system that assesses the support that people need to achieve the best possible quality of life across a range of parameters that are determined by them.

I recognise that a more individualised decision-making model is likely to lead to more detailed questions, responding to which may feel more onerous for the applicant and that the consideration of responses may lead to outcomes which are potentially subjective and may be inconsistent. Steps would be required to ensure consistency and fairness across the system.

“Speak to me, listen to me, understand my conditions. I feel I don't fit boxes, so I'm dismissed & not taken seriously. It's upsetting & undignified.” – Individual, response to the Independent Review of Adult Disability Payment Consultation^[231]

People finding it hard to see how the activities relate to their own lives, was an issue raised by several consultation respondents.^[232] Most commonly, it was noted that support was needed to help people describe their situation or the impact of their condition effectively within the context of the activities, or that relevant daily activities were not included.

The main request arising from the online consultation was for a more holistic, person-centred and flexible approach to decision-making, considering each application holistically, including the wider context of clients’ lives and circumstances. Several people feel that the current system used to understand disabled people’s needs is not fit for purpose. The use of arbitrary measures with little or no flexibility do not fully consider the frequency or the impact that symptoms have on a person, and as a result should not be used as a means of deciding what level of support they should receive. The only way to achieve this is to adopt a more person-centred, holistic decision-making process.^[233]

The difficulty in being able to adequately describe conditions, or their impact, in the context of the daily living activities was highlighted by several individuals. Comments often drew on personal experiences. Some felt the rules or questions were too rigid to allow people to fully articulate how their conditions impacted them. For instance, while it may be possible to achieve an activity, some people felt that the consequences of doing so are not taken into account, despite the intent of the reliability criteria.

Taking a holistic approach is important when considering fluctuating needs to ensure that the decision is not simply a ‘snapshot’ of a person’s needs but considers those needs over a suitable period of time to gain a complete picture and full understanding of the implications of their condition and circumstances.

The need for holistic, wellbeing and quality of life-based criteria that reduces the need for people to envisage hypotheticals that they do not fully understand was the prevalent theme in discussion with CAS advisers working on the frontline.^[234] A more holistic decision-making framework would put more weight on the depth of the information gathered, rather than the breadth of it.

When considering how social security is awarded in other countries, I looked at Sweden's welfare system which is known for its universalistic approach, where everyone has access to similar levels of benefits and support. For disability benefits, Sweden uses a needs-based approach with universal criteria for all citizens. Decisions are made through a series of assessments focusing on medical, social, and economic factors to ensure that decisions are holistic.^[235]

A potential model for how such a decision-making process might be framed is provided by the legislative framework governing assessments of social care needs in England under the Care Act 2014.^[236] Although the provisions in the Care Act have no legal effect in Scotland, as health and social care is devolved, it is a model worth exploring in relation to the way assessments are carried out and decisions made.

Woven through the tapestry of the Care Act, are eight fundamental principles to consider when undertaking an assessment and determining eligibility:

• strengths-based approach
• transparency
• whole family/holistic
• maximise person’s involvement
• recognise fluctuating needs
• promote individual choice and control
• appropriateness
• proportionality.

Adhering to these principles ensures that the decision is person-centred and promotes individual wellbeing. In the guidance for decision makers, it states that: ‘Your assessment style should therefore not be one size fits all, but adapted to the individual’s circumstances, needs (communication needs, levels of complexity etc) and preferences.’^[237]

In a roundtable session where I brought together stakeholders from the fields of social security and welfare advice, we looked at the benefits and drawbacks of adopting a more holistic and all-encompassing decision-making process based on a conversational assessment, with the decision, in relation to an award being made, determined by a health care professional. Although there are definitely some benefits to be gained from providing an opportunity for a person to talk about their whole life and describe in a less restrictive format the ways in which their disability or impairment impacts on their daily life, the overwhelming sentiment was that this would involve a backwards step by reintroducing, by another name, DWP-style assessments. It would also introduce more subjectivity to an already inconsistent decision-making process and make it far more difficult to challenge a determination. No-one was in favour of this.

“We recognised that a more individualised assessment model is likely to lead to more detailed questions, responding to which may feel more onerous for the applicant and that the assessment of responses may lead to outcomes which are potentially subjective and may be inconsistent.” – Law Society of Scotland, response to the Independent Review of Adult Disability, review of the mobility component consultation^[238]

However, there are some overarching principles that could be adopted by the Adult Disability Payment system in Scotland that would enhance the experience and increase the probability of all those who are eligible for support getting what they are entitled to:

• ensure the application and decision-making process is only as intrusive as it needs to be to establish an accurate picture of the person’s needs
• work with others to join up around the individual and avoid multiple assessments taking place
• recognise and seek to draw out the client’s knowledge, strengths and capabilities in line with strength-based practice.

An outcomes-based decision-making model

As already noted, disability benefits in the UK and Scottish social security systems currently use an impairment (or deficits-based) approach to establishing eligibility. When the UK Government introduced PIP, assessments to determine eligibility were explicitly defined as ‘a functional assessment of a capability’.^[239]

Unlike the deficits-based approach, an outcomes-based eligibility approach would consider what the outcome would be for the client if they had appropriate support in place. For example, if a person with severe depression had support and encouragement to prepare a healthy meal, the outcome is that they would enjoy a good standard of nutrition.

As identified in a search of existing literature commissioned by the Review Secretariat, it appears that work hasn’t been conducted in Scotland that looked specifically at the use of outcomes-based eligibility criteria for non-occupational disability benefits (or indeed any type of welfare benefits). While different approaches to decision-making and criteria/eligibility were considered, either as part of formal government reviews or as suggested ‘good practice’ approaches, the use of outcomes-based eligibility criteria did not tend to be considered.

Conversations around an outcome-based model tend to focus on trying to attract more disabled people into the workforce, rather than being a feature of any eligibility criteria for non-occupational disability benefits. For example, Re:State have highlighted that:

“[The separation of benefit eligibility and capability for work] would enable the work capability assessment to be a more positive and personalised conversation about what a claimant could do with support. It facilitates a more open, constructive dialogue between claimant and an appropriately trained adviser in which together they can devise a support package tailored to that individual claimant’s particular needs and circumstances. This, it has been argued, is key to enhancing the relationship between the claimant and adviser to advance the former’s return to work.”^[240]

The Scottish Government published a report^[241] in 2018 which compares aspects of financial support models for people receiving disability benefits in five countries: Denmark, France, New Zealand, Norway, and Sweden. These countries were chosen on the basis of the comparability of their disability benefits to those being devolved to Scotland at the time of publication. When considering the available literature, two French and Australian disability benefits do take outcomes into consideration as part of the assessment process. However, it is difficult to consider either of these models as successfully delivering a service based on an ‘outcomes-based eligibility criteria’, as outlined below.

Whilst not explicitly an ‘outcome-based’ model, the French ‘Prestation de compensation du handicap’ model does consider the outcome of the decision as part of the assessment. The client is still required to demonstrate they have an:

“absolute difficulty’ in carrying out one activity from a list including elements of mobility, personal conversation, communication, tasks and general requirements and relationships with others, or a ‘serious difficulty’ (requiring assistance) in carrying out at least 2 of those activities.”^[242]

“[A multidisciplinary] team is responsible for assessing the disability of the disabled person by means of a scoring guide for the assessment of disability and impairment of persons with disabilities. They also assess the claimant’s compensation needs on the basis of their projet de vie, or ‘life plan’. The Life Plan is a fundamental element of the assessment process and gives claimants an opportunity to outline their aspirations and the kinds of activities which would increase their quality of life, but which they cannot currently undertake as a result of their disability. The team may have to meet with the disabled person, their parents if the claimant is a child, or their legal representative. They may also visit the claimant’s home or place of work. However, face-to-face forms of assessment are not always necessary, and the team often meets without the claimant present.”^[243]

The Australian model is intended to be outcome-based. However, Dr Kate Anderson (Senior Research Fellow at RMIT University, Melbourne) argues that this principle is rarely applied in practice and notes that there is a gap in available knowledge required to definitively state why this is:

“The voice of [National Disability Insurance Scheme] planners is rarely heard in research, so it’s hard to know why the strengths-based approach isn’t taken more often. However, suggested reasons include a lack of disability expertise and unclear eligibility criteria. Planners may also be safeguarding against potential sympathy bias in providers’ recommendations, although there is little evidence to show this bias exists in practice.” ^[244]

This does highlight the importance of ensuring case managers have sufficient training and clear guidance, in order to be able to apply an outcomes-based approach, if adopted.

Upon completing a search for existing literature which addresses outcomes-based eligibility criteria for non-occupational disability benefits for adults, knowledge gaps (particularly with regards to international approaches) are evident. There is an absence of comparative analysis to allow for a clearer understanding of the rationale underpinning such approaches, the impact on those people applying, and funding models. This rapid analysis highlights that it is likely that case managers would be required to have an advanced understanding of the conditions of the people they are determining eligibility for. Therefore, this approach would likely require input from multidisciplinary teams.

While not a recommendation of how an outcome-based decision-making process would look in practice, Annex 1 provides an example of the types of questions and considerations that could potentially be applied to the current activities and descriptors to enable a more outcomes-focused approach.

Alternatives to a points-based system

The points-based system used for decision-making is widely disliked. When considering alternative approaches to a points-based system, several respondents advocated a way of measuring need and/or eligibility to be based on a social model of disability. It was argued that moving away from the current approach was necessary to help facilitate a more rights-based approach in Scotland, which could benefit disabled people's wellbeing through increased trust in the system.

“Overall, we are not convinced that a points and deficits-based model of assessing a person’s daily living needs is the best approach to determining eligibility for disability payments. As such, we would encourage the review to consider alternatives to the current points-based system for determining eligibility for ADP.” – Health and Social Care Alliance Scotland (The ALLIANCE), response to the Independent Review of Adult Disability Payment Consultation^[245]

At present Adult Disability Payment mirrors PIP eligibility criteria. When the UK Government introduced PIP, it noted that a key purpose of the eligibility criteria was to target support to those most in need and to be ‘financially sustainable’.^[246] It noted that in introducing PIP, it expected that the number of people previously in receipt of DLA would reduce as a result.

The 2020 SCoRSS report states:

“We should not be confined to what has been done before. Scotland should take a more flexible approach than continuing to utilise a points-based deficit system. Measuring a disabled person’s need for support by their ability to complete simple tasks does not align with the Scottish Governments stated position that social security is an investment in society.” – Scottish Campaign on Rights to Social Security^[247]

Many organisations in Scotland who responded to the consultation including The ALLIANCE have consistently advocated for the removal of a points-based system. They state that:

“…whilst a points-based system may be easy to administer, it does not necessarily sit well with a human rights-based approach to social security or with the provision of adequate support. Whether fairly or not, people may perceive a points-based system to be rooted primarily in controlling costs for the government, rather than ensuring the right support is given to disabled people. In particular, there is potential for serious psychological distress where individuals fall only marginally short of a required number of points, risking giving the sense that they are ‘disabled, but not disabled enough’ to justify support.” – Health and Social Care Alliance Scotland (The ALLIANCE), response to the Independent Review of Adult Disability Payment Consultation^[248]

Despite this strong argument for change, I haven’t been able to find another suitable and effective way of measuring eligibility that would:

• be more dignified for disabled people
• mirror a human rights social model of disability
• ensure fairness and consistency in decision-making
• make it easy to appeal a decision.

I have considered using percentages, Red-Amber-Green (RAG) ratings, and approaches such as scaling across a range of points rather than a sharp, cliff-edge where people either qualify for a given level of support or don’t. These potential alternatives may be more palatable to some and remove the use of arbitrary numerical values; however, I don’t believe that their introduction would necessarily improve the system. Ultimately there needs to be some form of transparent measurement applied to clear criteria, to ensure a fair and equitable approach.

One comparator is how benefits are awarded to people with industrial injuries. Industrial Injuries Disablement Benefit (IIDB) is a payment for people who are disabled as a result of an accident, disease or event that happened at work, in connection with work, or whilst on an approved employment training scheme or course. IIDB’s percentage system enables a calculation in order to work out the level of disablement resulting from occupation taking into account loss of function due to other factors. It also allows multiple occupational diseases/injuries to be aggregated together to work out overall entitlement. There’s not a lot of information publicly available on rationale behind the percentage system beyond this but, interestingly, a 2014 external review of assessing disablement under the Scheme found:

“It is not clear if the commonly assigned percentages as a measure of disablement suggest a level of linearity and interval spacing in the disablement scales that is not, or cannot be, reflected reliably in other measures of functional ability... a review on the scientific base of functional disability assessments might shed more light on this.” – Industrial Injuries Advisory Council^[249]

As far as I can tell, no further review on this specific question has been undertaken. Some other countries’ equivalent systems use a points-based system rather than a percentage-based system to calculate entitlement. However, they also assign certain conditions and injuries a value which corresponds, in most cases, to value of payment as it is the case for IIDB.

If we accept that some form of awarding points to aid decision-making, is to remain then there are some issues to be addressed that could potentially improve the client experience and ensure further transparency.

Calls for greater transparency in how points are allocated were made at a few events. It was noted that the descriptors used to allocate points, are not currently included anywhere in the Adult Disability Payment application form. It was suggested that the descriptors and corresponding points should be included on the application form to help people understand the points system and why they are being asked the questions. In turn, this may enable them to understand what information about their condition and daily needs is relevant or helpful to include in their application. One of my recommendations in the Interim Report^[250] states ‘although available online if searched for, consider how to make the activities and descriptors and associated points more prominent and accessible for applicants.’ This will be reinforced in my final recommendations.

Several people who responded to the online consultation suggested that people with certain conditions may find it more difficult to gain points. These included those with mental health problems, learning disabilities, neurological conditions such as ME/CFS, neurodivergent individuals and those with ADHD or Long Covid. In addition, it was suggested that features or symptoms of those conditions could result in people having a limited understanding or clarity about the daily living activities and how they applied to them, potentially leading to points not being awarded.^[251]

There have been calls to address some of the perceived anomalies in the current system.

For example, in the moving around activity the focus of the scoring system is on the distance someone can walk, aided or unaided. This means more points are awarded for someone being able to walk up to 20 metres without an aid (10 points) than someone who can walk the full 20 metres with an aid (8 points). People are therefore awarded more points if they can walk further, but with help, than a lesser distance without an aid.

“In reality, if someone needs an aid in order to walk, whether that’s a walking stick, a crutch or an ankle foot orthosis, they have less mobility than someone who does not need an aid to walk.” – Neurological Alliance of Scotland response, to the Independent Review of Adult Disability, review of the mobility component^[252]

Another anomaly relates to the awarding of two points to all activities that require the use of an aid or appliance except in one case which ‘requires the use of an aid to be able to manage medication’, and which is awarded only one point.

Some other apparent anomalies were pointed out to me including:

• the allocating of three points for help getting in or out of an un-adapted bath or shower - as this is a relatively high number of points allocated to a task some people I spoke to question the logic
• why there is only one assessed activity in the full suite that awards one point and three points respectively - one welfare adviser told me that they view the one-point descriptor as just as serious as the equivalent descriptors in other activities which are worth two points, stressing that ‘it can be very frustrating when people receive seven points and are only one point short of an award’
• if a person needs to sit down to prepare a meal, this counts as an ‘aid’ for preparing food but not for dressing and undressing.

It was also noted that points are not awarded for nuance. One participant told me that:

“they ask if you can catch the bus, yes but how do you do this? If the bus doesn’t stop where my (…) thinks it should, then (they) completely freak out. (They) can manage if we can rehearse it, practice it. But that doesn’t get you any points.”

I considered several possible alternatives to a points-based system to address the argument that the current PIP eligibility criteria are out of date and not fit for a human rights-based system. This included starting from scratch with a blank sheet of paper; considering the application of the International Classification of Functioning, Disability and Health^[253] (as is used in other countries as a way of assessing eligibility for social security amongst other things) and considering the way social care assessments and decisions are made in England.[254] None of these options, on their own, address the challenges inherent in the current system and so I have concluded that it is in the best interests of disabled people to balance the improvements any proposed changes will bring, with the potential issues that such changes may cause. Significant changes could create further anxiety and result in some clients being further disadvantaged. I have been told by many stakeholders that although we have an imperfect system, it is a system that a lot of people are familiar with, and welfare advisers are nervous about significant change unless there is a very clear and substantial benefit to clients as a result. Change for change’s sake is not desirable. This is not to say that changes to the system should not be made, and the following recommendations confirm this view. However, the impact of any such changes should be carefully considered.

Recommendation 40 : As recommended in the interim report, confirm if Social Security Scotland intends to consider how to make the activities and descriptors and associated points more prominent and accessible for applicants.

Recommendation 41 : Taking on board the findings from this Review, undertake a thorough review of the eligibility and decision-making criteria to:

(a) move from a deficit-based system based on assessing what people are unable to do to a system that acknowledges a human rights based social model of disability, places the emphasis on impact and outcome and supports equal participation in society

(b) ensure the activities and descriptors reflect modern life

(c) adopt a more individualised decision-making approach providing an opportunity for a person to describe their whole life and describe in a less restrictive format the ways in which their disability or impairment impacts on their daily life

(d) address the anomalies in the points being awarded per activity and consider the use of weighting to ensure activities are not assessed in isolation.

Fluctuating needs and the 50% rule

Under current Adult Disability Payment rules, an activity descriptor is deemed to apply to a person with a condition if it reflects how their condition affects them for more than 50% of the required period (one year). For some clients with fluctuating conditions for a wide range of reasons it can be difficult to quantify how your condition affects you in such a set way. People with unpredictable conditions, for example ME, multiple sclerosis (MS), or epilepsy, may not always have acute symptoms that fit neatly within this rule. Nevertheless, they require support when symptoms do occur and/or because they manage their condition or disability in a way that results in them needing support irrespective of the amount of time they are experiencing an issue.

The term ‘fluctuating condition’ covers a wide variety of symptoms, impacts and outcomes. Within any single condition there is significant variation in people’s experiences of fluctuations and the impacts on their lives. Individual experiences of fluctuating conditions are shaped by the frequency, duration and extent of change on what they can do and achieve on any given day, and what happens in the context of their lives when this occurs. What is consistent across the experiences described to me, is that the impact on day-to-day life is unpredictable and variable and therefore subject to uncertainty.

While many stakeholders acknowledge that there have been changes made to improve how applicants experience the process of completing the application, these changes have limited or no bearing on how much Social Security Scotland understands the impact of fluctuating conditions. Several respondents gave positive feedback about the fluctuating conditions section of the application form, stating they welcomed the broader range of conditions, found the contextual information helpful or felt it improved the previous application form.^[255]

Many people with MS who took part in the Review have also welcomed the changes to the application and consultation process but the overwhelming feedback the MS Society has had is that while there has been some changes to how fluctuating conditions are considered, when compared to PIP, these will have minimal or no impact as they do not go far enough to recognise the true needs of people living with fluctuating conditions.

People with MS and other fluctuating conditions may incur additional costs as a result of their health condition and some of these costs will be incurred to mitigate the impact of their symptoms on their worst day, regardless of how often these days happen. A 2022 MS Society survey found that nearly a third of people with MS sometimes could not afford to eat balanced meals while others have had to reduce or give up altogether treatments or therapies.^[256] These treatments and therapies play a vital role in managing an individual’s MS and keeping them as well as possible.

Based on feedback, it is evident that many people with fluctuating conditions find the current application form challenging when trying to describe the changing levels of impairment that they experience. Some stakeholders told me this results in frustration, and a sense of unfairness and inequality for clients with such conditions.

Many people commented on the difficulty of understanding the criteria for fluctuating conditions, which they felt were unclear and overly complex. Respondents to the online consultation highlighted the formal, overly complicated language, including using fixed or confusing statements and the lack of examples or sufficiently detailed guidance. A common suggestion was to simplify or further clarify the criteria.^[257]

Respondents also called for a more open-ended approach to allow clients to express themselves in their own way. A key concern was for the application form to allow sufficient space to adequately describe the impact of the condition or multiple conditions.

The DWP wanted to develop an improved evidence base and understanding of applicant experiences of fluctuating conditions. Its research, published in October 2024,^[258] set out to understand the best way, within the disability application and assessment process, to capture the impact of conditions which fluctuate.

The research highlighted:

• the complexity of living with conditions that fluctuate over time and the impact this has on an individual’s life
• the difficulty in describing fluctuations – their physical, emotional, and cognitive outcomes, and impacts of these on daily life.

Through the research the DWP identified four potential areas in which the application and assessment process for disability benefits could be strengthened. These included:

• improving the questions asked of applicants within the application and assessment process accounting for variability, triggers and actions taken to manage conditions
• providing greater flexibility in the application and assessment process including the timing and format for applicants to provide evidence of the impact of their conditions
• ensuring health disability assessors receive training on predictability, manageability, and varying fluctuation cycles experienced by many applicants
• providing support and guidance to help clients describe the impact of fluctuating conditions through the process.

An ongoing cycle of fluctuation with five constituent elements was identified. This framework for understanding fluctuation may be helpful in staging conversations with clients going through the Adult Disability Payment process to support a better understanding of the nature and impacts of life with a fluctuating condition.

Those five elements are:

• underlying condition(s) – the foundation that causes differing degrees of predictability and manageability of a condition
• trigger – a trigger can bring on, worsen, or change a condition at a certain point in time
• manage – actions that are taken to both prevent fluctuations or flare-ups and/or reduce outcomes
• outcome – the level and duration of a variance in physical, cognitive, and emotional ability
• impacts – how the variance in physical, cognitive, and emotional ability influence an individual’s current and future ability to undertake daily living tasks and responsibilities such as work commitments or social activities.

Many people I spoke with have described how living with a fluctuating condition is complex, requiring them to monitor and manage changes in capability so they can undertake routine daily living tasks in a way that causes them no further harm. Which activities an individual undertakes can have implications for themselves and those around them for example, using energy for one activity can reduce or rule out someone’s capacity to undertake another activity.

In a meeting with Inclusive New Normal^[259] I was told how essential it is to develop a clearer understanding of the consequences of engaging in physical activity, particularly the post-exertion effects. These effects, when combined with cognitive impairment, brain fog, and energy depletion, can lead to post-exercise malaise. This condition may leave individuals unable to function for several days and there is a risk that the impact of the activity causes permanent harm.

“It is not possible to measure the frequency of the fluctuating condition and its impact. People will either fill it in based on their worst day (even if that day is only once a month) or they will under describe their level of difficulty.” – Individual, response to the Independent Review of Adult Disability Payment Consultation^[260]

Other recurring themes include:

• describing fluctuating conditions can be hard for many, especially when the condition itself makes engaging in complex communication more difficult
• time limits to complete the application make the activity more challenging; one person said that the application was hard to complete due to intermittent fatigue, so they had to spread the completion of it over a period of time – the deadline then became stressful
• the importance of asking about the impacts of daily activities on people with fluctuating conditions, rather than just asking whether certain tasks can be accomplished
• mental health and physical health can fluctuate independently of each other, in differing directions or one being more stable while the other varies
• when experiencing a flare-up, physical and emotional energy can be significantly limited, reducing the ability to solve problems, communicate or do activities that may be required for an application or consultation
• people often don’t feel understood or believed, especially when the condition is not well known, or the symptoms are more generic (such as fatigue and pain)
• the need for case managers to receive more thorough training around specific conditions, including fluctuating conditions, to help them understand the impact on the life and wellbeing of the client
• the belief that the 50% rule is not a useful measure and should no longer be used.

The 50% rule remains controversial, as one participant told me:

“I have postural tachycardia syndrome which means I am OK as long as I don’t stand up. When I do I faint. I don’t know where that would fall with the 50% rule as I am not unconscious more than 50% of the time, but I’m at risk 100% of the time.”

Clients must show they meet a descriptor on over 50% of days in a 12-month period. This can be quite challenging for people to understand and even more difficult for them to articulate, as fluctuating conditions have different impacts over time. Welfare advisers suggest that it may be helpful to adjust the ways in which questions are asked to help people express the amount of good and bad days they experience, what effects this and what effect this has on what they can and cannot do. For many people activities can be achieved on some days and not others. They may be achieved without triggering further symptoms (such as pain, stress or significant energy decline) on some days and not others. Fitting this complex life experience into a 50% rule to many people, just doesn’t make sense. As one person put it:

“the current system only achieves a pigeon-holing of people into holes that don’t always fit.” – Individual, response to the Independent Review of Adult Disability, review of the mobility component^[261]

Some stakeholders feel very strongly that using the 50% rule does not provide an accurate picture of how a person’s condition is impacting on them, and it has the potential to deprive them of the financial means to effectively manage their condition.

CAS has identified that certain impairment types, such as unpredictably fluctuating conditions, are at greater risk of being refused what is often a lifeline award or being awarded benefit at a level that does not reflect actual need.^[262] Emerging patterns in Adult Disability Payment application data supports some degree of consistency of award refusals across less visible, fluctuating conditions, with an additional likelihood of refusal for characteristically unpredictably fluctuating conditions such as the various forms of inflammatory bowel disease.[263]

Some stakeholders suggested that the problems arise not from the 50% rule itself, but they are due to case managers failing to properly apply the other relevant rules of Adult Disability Payment, such as the reliability criteria.

The MS Society would endorse a more person-centred holistic approach. Rather than trying to measure the presence of a fluctuating condition 50% of the time, the eligibility criteria should focus on how the fluctuating condition impacts the applicant on their worst days.

“The current system does not adequately measure the support needed for people with fluctuating conditions like MS, post-polio syndrome, epilepsy and ME. Therefore, by taking on a more person-centred approach, looking at what can be achieved on a ‘worst day’, would allow many more people with a fluctuating condition to access higher rates of financial support.” – Neurological Alliance of Scotland Response to the Consultation on the Mobility Component^[264]

Another good example of this comes from people living with PMDD. Symptoms are not present all the time and the prescriptive nature of the application process makes it difficult for people with PMDD to evidence the impact of their condition. Although the symptoms of PMDD are present for one-to-two weeks per month (every month), it is known to have a debilitating impact on all aspects of life, even when symptoms are not present. This, however, can be challenging to demonstrate.^[265]

However, even when describing ‘worst days’, there appear to be differing views amongst people affected by PMDD and those supporting them:

“The top tip that I was told is to write it from the perspective of your worst days.” – Participant with PMDD, quoted in Premenstrual Dysphoric Disorder and the welfare state: recommendations for reform^[266]

“People do always say you should take your worst day. But actually you shouldn’t. I’ve been in so many tribunals where people have come across like they’ve exaggerated.” – Professional stakeholder, quoted in Premenstrual Dysphoric Disorder and the welfare state: recommendations for reform^[267]

SAMH^[268] and other stakeholders recognise that replacing the 50% rule is a significant challenge, with competing demands to design a social security system that balances fairness and objectivity, with the complexities of individual circumstance. However, if it is to be done then now is the time – replacing the 50% rule as part of a wider reform of Adult Disability Payment.

My overriding sense when considering people with fluctuating conditions is that each person will experience similar situations differently. This applies to everyone, not just those living with fluctuating conditions and further supports the suggestion that a more holistic and personalised approach to eligibility might be better than the current narrow way of doing things. What is clear is that the additional costs incurred to mitigate a person’s worst symptoms have to be met on the vast majority of days as people don’t know when or to what extent these symptoms will be impacting on their ability to complete tasks of daily living. A more flexible approach that considers frequency as well as severity of impact, without an arbitrary threshold, may represent an improvement. In line with a human rights social model of disability it may be more appropriate to explore the wider causes of fluctuating need as needs may fluctuate not just because of a condition but also because of changing circumstances such as changes in home environment, relationships, employment or wider societal things such as the Covid-19 pandemic.

Observation 5 : As I have noted, supporting information is out of scope of this Review. However, I would like to take this opportunity to highlight that Social Security Scotland may benefit from considering the merits of a more flexible approach with regards to the timing and format for applicants with fluctuating conditions to provide supporting information about the impact of their disability.

Recommendation 42 : Replace the 50% rule with improved application of the reliability criteria and a more person-centred process that allows people to define how they manage on their worst days and the resulting impact on other days.

Recommendation 43 : Improve the questions asked of applicants within the application process to account for variability, triggers and actions taken to manage conditions.

Recommendation 44 : Case managers and practitioner training and associated training materials should be regularly refreshed with a focus on ensuring consistency in the decisions being made and further understanding of the impact of the fluctuating condition on the life and wellbeing of the client.

Substantial risk

Citizens Advice Scotland^[269] has advocated for introducing a substantial risk provision to Adult Disability Payment, much like there is a substantial risk provision for the Work Capability Assessment (see below). This would ensure that where a person may not score enough points to be entitled to Adult Disability Payment through the daily living or mobility activities, a case manager could still make an award if ‘risk of suicide, self-harm or dangerous levels of social isolation’ were determined to be present. The Scottish Government has not to date consulted on introducing a substantial risk provision.

The DWP uses the Work Capability Assessment to decide if someone is unfit for work and therefore eligible to receive Employment and Support Allowance, or the health element of Universal Credit. These are not extra-costs disability benefits but are means-tested, earnings-replacement benefits where someone is temporarily or permanently unable to undertake paid work. However, the only similarity between the Work Capability Assessment and the decision-making process for Adult Disability Payment is that both use a points-based system with a series of functional activities and descriptors to establish eligibility.^[270]

If someone does not score the minimum number of points, the DWP can still treat them as though they do. This applies where, because of the person’s health condition or disability, there would be a substantial risk to the health of the person or others if they were found fit for work.^[271]

CAS advocate introducing a substantial risk provision to Adult Disability Payment would be beneficial for several reasons. These include providing an additional level of safeguarding for potentially vulnerable clients.

Whilst the UK Government’s substantial risk provision for the Work Capability Assessment operates within the context of means-tested benefits, entitlement to Adult Disability Payment is intended to meet the extra costs of having a disability or health condition and does not depend on being in or out of employment.

Despite the differences between the purposes of these benefits, it is reasonable to suggest that the principle of ensuring that a client’s health is not put at risk because of a benefit decision could be a meaningful additional measure in the delivery of Adult Disability Payment. However, this does depend upon the extent to which the Scottish Government keeps a purely functional assessment model for Adult Disability Payment.

Recommendation 45 : Consider the introduction of a substantial risk provision for people who fail to score points to qualify for an award of the daily living or mobility component of Adult Disability Payment if not making an award would pose a substantial risk to the physical or mental health of the person.

Eligibility criteria – activities and descriptors

Rules that decide whether someone is entitled to Adult Disability Payment are called the eligibility criteria. Adult Disability Payment is made up of two parts, a daily living component and a mobility component.

During the Review consideration was given to the benefits or otherwise of combining the two parts. However, there was no call for changes to be made and no evidence to suggest a merger of the two components would improve the client experience.

As outlined previously, consideration was also given to creating a totally new framework for the eligibility criteria. This was ruled out on the basis that the negative impact from the disruption and confusion that would inevitably result would outweigh the benefits of such an approach. In addition, any newly devised system would still ultimately require some form of measuring and scoring against a set of criteria and therefore stakeholders could not see any merit in simply replacing one system with another.

What is clear however is that there is an overwhelming expectation because of this Review, for the inherited PIP criteria to be improved to sit more comfortably with the aspirations set out in the Charter and to ensure that Adult Disability Payment is fair, transparent and supportive, empowering those it serves to live with dignity and independence. As already recommended, the eligibility criteria should be reviewed to address the anomalies and to ensure a modern, outcomes-focused and more realistic approach to determining eligibility based on a social model of disability and the principles enshrined in the UN Convention on Human Rights.

Daily living component

Following the consultation and call for evidence, many respondents considered the rules, the nature and wording of the daily activities, and how these are asked about in the Adult Disability Payment application form, as one and the same.

Key findings on the Daily Living activities include:

• views on the clarity of the rules for the daily living part of Adult Disability Payment were mixed – one third (35%) of consultation respondents agreed that the rules for the daily living part of Adult Disability Payment are easy to understand, just under half (48%) disagreed and 17% were unsure
• reasons for disagreeing included vague terminology, difficulties relating the activities to real life, and difficulty applying them to fluctuating conditions or other specific conditions like Long Covid, ME/CFS, autism spectrum disorder, or mental health problems
• respondents recommended clarifying the rules and simplifying the language to make the daily living component easier to understand – others suggested using more illustrations, while participants at events emphasised the importance of accessible support for those applying
• the vast majority (87%) indicated that people with certain conditions might find it difficult to receive points for any one or more of the daily living activities – the most common view in comments was that people with certain conditions could struggle to be considered adequately under the existing daily living activities, including a belief that the current activities were too focused on physical disabilities
• others thought that their conditions were too difficult to describe and would struggle to reflect the impact of their conditions in the existing activities
• consultation respondents suggested making the activities more inclusive of all conditions, including fluctuating conditions, and ensuring that the criteria reflect the needs of those who currently feel underrepresented by the application process.
• There were also calls for greater transparency about the point allocation.^[272]

“When discussing reasons for appealing with appellants we often find that they are unclear on why certain points were not awarded based on their conditions or limitations, also the reasons can be inconsistent. For example, if points are awarded for difficulty in the bathroom with standing but not carried over into the kitchen when preparing a meal people are unclear as why this is so when it is the same difficulty. The decision does not explain the difference in its reasoning.” – Glasgow City Council, response to the Independent Review of Adult Disability Payment Consultation^[273]

Mobility component

While it was acknowledged in the consultation on the mobility component that the Scottish Government has sought to make the application form guidance clearer the strength of feeling in relation to the way mobility is determined is the prevailing theme.

The second most prevalent theme, raised by several, was that the criteria would benefit from a clearer definition of what moving means. A few respondents specifically requested clarity on the difference between ‘aided’ and ‘unaided’ movement. Respondents suggested using open questions that ask about movement, what people rely on to get around, and how people get around such as speed and with what aids.

A common overarching theme was a call to include a range of additional impacts reflecting clients’ lived experiences before, during and after moving around. Respondents suggested considering:

• the planning needed, both physical and mental, to prepare for moving around
• lingering physical and mental impacts, including pain and fatigue associated with moving around or journeys not going as planned, that can last for days, weeks or longer or have a delayed onset
• that clients may need to pace themselves because the impact of moving could be long-lasting
• people may avoid certain journeys to ensure they do not feel the impacts of those movements in the hours, days or weeks that follow
• as others mentioned, consideration should be given to hidden disabilities where moving is possible, but the effect of moving can range from pain and fatigue to dizziness, breathlessness and abdominal pain
• how often the distance can be repeated safely alongside everyday activities.

The final section of the report is concerned with specific issues with reference to the activities and descriptors.

Daily living component activities

Activity 1 – Preparing food

This activity considers an individual’s ability to prepare and cook a simple meal from fresh ingredients. Case managers will consider whether the individual uses aids or appliances such as a perching stool, or impaired sight utensils and whether they use a cooker or a microwave, and whether they require any help. ‘Cook’ in this section means to heat food at or above waist height on a standard height cooker hob or using a microwave, and ’prepare’ means to make food ready for cooking or eating. It does not consider an individual’s ability to bend, access food or utensils from cupboards, move around the kitchen, hear (if visual kitchen indicators such as a flashing light instead of sound could be used on a kitchen appliance), food presentation, shopping for food or use of an oven to cook food.

As with other criteria the factors considered here are very focused on physical ability. For example, ‘in this section ‘cook’ means to heat food at or above waist height on a standard height cooker hob.’ The criteria are not concerned with the outcome, only the activity itself.

Despite prompting being captured in the reliability criteria, some people felt that there is no consideration given to the relevance of mental health barriers to preparing food, things like motivation and psychological fatigue. Some people suggested that providing more examples on the application form of how the descriptors apply when someone has a mental health problem or is neurodiverse, would be helpful as it can be more difficult to relate the activities to their condition.^[274] For example, someone who is experiencing a serious mental health problem may not be motivated to eat or to get out of bed. The descriptors could be re-worded to include mental health and neurodiversity.

Many people with eating disorders reported that the food and nutrition related descriptors do not work for them. I met with a clinician from an eating disorders clinic who illustrated the ways in which people can fall through the gaps of the current criteria and find themselves without the financial support that they need. More general considerations include the fact that the criteria do not consider the ability of a person to access a diet likely to optimise health.

In certain activities such as food preparation, the effort required to complete these activities often outweighs the benefits. For example, consuming a prepared meal. For such situations, support from other people can be the deciding factor in determining whether a person chooses to expend the energy on an activity.

Two organisations raised issues with the preparing food activity, with #MEAction Scotland reflecting it was unclear if all the tasks involved in achieving an activity are considered in the application form or decision-making process. They highlighted that tasks involved with this activity should also include preparation and clearing up of equipment, utensils, work surfaces, washing up, drying and putting away after each meal, washing, cleaning the area and paying for food items in a shop, with all that entails, including getting there and back and waiting to pay.^[275]

Shopping for food is not currently considered in the ‘preparing food’ activity. Many respondents to the consultation raised the point that if a person is not able to shop for food, they cannot prepare it or eat well.^[276] Online shopping has made this easier, but there is a cost attached and not everyone has the digital or cognitive skills to be able to do this.

One disabled person felt that although someone may be physically able to make a meal, they may need emotional support to ensure that the meal is healthy and currently this isn’t considered.^[277] They highlighted that if you cannot cook a simple meal using a conventional cooker, but can do so with a microwave, you score two points. However, if the microwave meal is overly processed and lacking in nutritional value it is not a balanced, healthy meal.

Without prompting, some people may avoid eating, etc., to the point where that becomes detrimental to health. Cognitive dysfunction can be present, and prompting may be required to follow preparation and eating processes. This is particularly relevant for people with an eating disorder. Taken together, these circumstances should currently score points, but some people applying for Adult Disability Payment may not realise this.

Other related issues raised include:

• preparing a ‘simple meal’ could mean beans on toast every day
• specific digestive needs require a lot of energy-draining chopping even if ‘simple’
• participants at engagement events added that more points should be awarded if the only food an applicant can prepare is of poor nutritional value^[278]
• there can be significant physical costs after exerting energy needed to prepare and cook a simple meal –

“assistance may be required for an individual who is unable to cook due to lack of energy, or the risk of fatigue or delayed fatigue. It would therefore be unsafe for them to do so.” – #MEAction response to the Independent Review of Adult Disability Payment Consultation^[279]

• slow cookers which are not mentioned can be safer, as can air fryers, instant pots, etc., which are also more energy efficient
• memory or cognitive issues are not always accounted for; one person who has dementia told me that they can physically chop and prepare food, but they forget they’ve done it or put the meal into the bin, or they forget to eat what they have prepared – the outcome is the same as it is for someone who cannot prepare food because of a physical impairment (I note that the under the current reliability criteria, a person presenting this case should be considered as unable to prepare food to an acceptable standard)
• preparing food can be a real problem for people who may have the physical and cognitive ability to prepare food but because of chronic fatigue, or an eating disorder, for example, they may find it very hard to explain why in such a way that would score points under the current criteria. They might be able physically to prepare or cook food, but doing so could put them in danger so it is not safe for them to do so
• aids/adjustments could include frozen chopped vegetables, ready meals, pre-prepared food.

“Again, it is the 1-size-fits-all approach. I can make a cup of tea. I cannot remember when or where I put it. But that does not matter. The box is ticked.” – Individual, response to the Independent Review of Adult Disability Payment Consultation ^[280]

Recommendation 46 : For the ‘preparing and cooking a simple meal’ activity to be reviewed:

(a) so that it adequately captures that quick simple meal preparation is not always the best approach for people with specific dietary needs, food insensitivities, eating disorders and those experiencing resulting pain or fatigue

(b) so that the ability to shop for food is included.

Activity 2 – Taking nutrition

This activity considers an individual’s ability to be nourished either by cutting food into pieces, conveying food and drink to the mouth, then chewing and/or swallowing, or through the use of therapeutic sources. The defined term ‘taking nutrition’ refers solely to the act of eating and drinking. The quality of what is being consumed is not currently relevant, as long as it is capable of providing nourishment. The guidance says ‘this should be distinguished from a client choosing to eat an unhealthy or restricted diet, to eat to excess, or to avoid certain foods due to dietary requirements’.^[281]

There was a fair bit of discussion about the ‘taking nutrition’ activity in my meetings with stakeholders and at some of the consultation events including the point raised a few times that diet is a significant part of managing health conditions and specialist diets can contribute to the additional costs of having a disability.

Some people suggested that the two food-related activities should be flipped because the questions on the application form are repetitive, cover the same ground and clients report that they often are saying the same thing in response to both questions.

Some people felt that this activity does not take into account people who can manage to eat when food is put in front of them but would struggle to get the nutrition they needed if left to their own devices (this may particularly be the case for people with mental health problems). I note, however, that people who need prompting to eat the food in front of them would currently score points under the current eligibility criteria.

One person who shared their story with me lives in a supported living facility with a communal dinner hall. These facilities do not give people the choice to be able to prepare food for themselves, so it makes the preparing food activity/descriptor-related questions difficult to answer.

Many people feel that the ‘taking nutrition’ descriptor is too narrow. For example, if someone is eating unprompted but only eating crisps and biscuits, they do not get points. We heard during the consultation that if someone has diabetes and cannot afford appropriate food, such as good quality carbohydrates, this can result in poorer health outcomes.

The current rules do not consider the nutritional content of the food being consumed, only that the client is able to consume any food, which many people feel is not sufficient. However, defining a ‘healthy’ meal is a contentious issue. Some people felt that the aim should be to assess if a person is able to prepare food and consume food that is appropriate to their situation and condition in order to better manage their health, rather than eating what others might say constitutes ‘a healthy meal’.

The benefits of healthy eating, active living and maintenance of a healthy weight are widely recognised and directly associated with a wide range of health benefits.^[282]

“The impacts of poor diet and overweight are profound. They affect not only our health, but also our ability to lead happy, fulfilling lives. They have also led to increased, unsustainable demand on the NHS and other public services.” – A healthier future: Scotland's diet and healthy weight delivery plan^[283]

The Scottish diet remains stubbornly unhealthy, and we are far from meeting our dietary goals.^[284] This has a direct impact on levels of overweight and obesity – and therefore health harm – in the population.

Progress towards the Scottish Dietary Goals has been slow. Around two-thirds of all adults in Scotland (66%) are living with overweight (including obesity), with around one-third (30%) of children being at risk of overweight (including obesity).^[285]

Affordability can be a barrier to being able to eat a healthy balanced diet. Research has shown that those with the lowest income currently must spend around 50% of their disposable income to eat a healthy diet compared to only 11% for those with the highest income.^[286]

The Good Food Nation Act presents an opportunity to adopt a ‘Whole of Government’ approach to the development of food and drink policy, that prioritises actions to address the social, commercial, economic, and environmental factors that influence health inequalities.^[287] There may be a role for Adult Disability Payment here.

In addition, I met with a member of the Faculty of Eating Disorders. The Faculty states that it works to secure the best outcome for people with eating disorders.^[288]

The main issues raised during the meeting for people with an eating disorder when applying for Adult Disability Payment included:

• a lack of awareness of Adult Disability Payment
• not recognising that an eating disorder is a disability and therefore not seeing themselves as potentially eligible
• not being able to convey the impact of the eating disorder within the questions asked on the application form
• finding the activities and descriptors irrelevant in particular the Preparing Food and Taking Nutrition activities
• prompting not taking into account the needs of many people with an eating disorder and the off-putting language that describes the need to be ‘experiencing severe depression or have a serious eating disorder’.

There was a request to include specific mention of eating disorders in the food related descriptors or to mention eating disorders in the introductory notes at the start of the activity.

Recommendation 47 : For the taking nutrition activity to be reviewed to consider the nutritional content of the food being consumed, being sensitive to the fact that ‘nutritional value’ needs to be appropriate to an individual’s situation and help them to better manage their health.

Recommendation 48 : To consider the particular needs of people living with eating disorders especially in relation to the ‘preparing food’ and ‘taking nutrition’ activities.

Activity 3 – Managing therapy or monitoring a health condition

This activity is concerned with the need for medication or therapy to monitor a health condition in a domestic setting. In the guidance for this descriptor ‘therapy’ is defined as a non-pharmaceutical treatment which does not involve the use of medicinal drugs.^[289]

The following are examples of therapy which includes but is not limited to:

• physiotherapy
• home dialysis
• special diets where both attention to the nature and timing of food is integral in the management of the diet and where failing to adhere to the diet would result in an immediate deterioration in an individual’s condition
• psychotherapy.

Therapy does not include either of the following:

• taking or applying, or otherwise receiving or administering, medication (whether orally, topically or by any other means)
• any action which, in the individual’s case, falls within the definition of ‘monitor a health condition’.

Reflecting on the point made earlier that the outcome of the activity is what is important to many people, some stakeholders have questioned why only therapy carried out in the home is considered in Activity 3.^[290] One person speculated that when the PIP criteria was established, the DWP determined that someone requiring a professional to come to their house indicated a higher level of impairment than someone who can travel to receive treatment.

Some would argue that therapy outside of the home is still very much a part of a person’s ability to manage their conditions and that additional costs may be incurred as a result of needing non-domestic therapeutic interventions or treatment.

One stakeholder noted that some people find it too difficult to go to appointments for a number of reasons, even though they may physically be able to get there and understand why the appointment is important. They may need prompting or assistance to go.

There is also a built-in assumption within this activity descriptor that everyone has equal access to forms of therapy and support. CAS supports many people who have had negative experiences of seeking support, such as clients with mental health problems. Some conditions are difficult to diagnose, and this can leave people without the therapy or support they need. These scenarios are difficult to account for under the current system.^[291]

As the purpose of Adult Disability Payment is to assist with the additional costs of having a disability some stakeholders thought that paying for private physiotherapy and other therapies, outside of their home, should be included. Some stakeholders highlighted that people use private services because they are too difficult to access on the NHS. It is technically an additional cost, but the pushback comes from these treatments being available on the NHS.^[292]

Other issues raised include:

• there are forms of therapy that are helpful but not technically classed as a treatment, for example homeopathic interventions
• undergoing treatment can also have unintended consequences such as therapy for PTSD, causing a person to feel worse before they feel better
• some people are excluded from forms of therapy due to being digitally excluded
• it can be costly to get to and from support groups
• the side-effects of some medication, including drowsiness, can compound symptoms and functional limitations which isn’t currently taken into account.

Recommendation 49 : For the ‘managing a therapy or monitoring a health condition’ activity to be reviewed so that:

(a) reinforcement of consideration being given to the need for therapy (rather than whether it is in fact provided) being the determining factor, whether inside or outside of the home environment

(b) consideration is given to the inequality of access to diagnosis and forms of therapy

(c) therapy, whether obtained through public (such as the NHS or local authority) or private means (including private healthcare, therapy or community resources), qualify for the purposes of this activity as ‘therapy’.

Activity 4 – Washing and bathing

Activity 4 considers an individual’s ability to wash and bathe. The guidance from Social Security Scotland states that ‘washing means cleaning one’s body and hair, including removing dirt and sweat and bathing includes getting into and out of both an un-adapted bath and an un-adapted shower’.^[293]

Many people I spoke to are confused as to why the ‘washing and bathing’ criteria are written in the way that they are. They highlighted their views that the wording and eligibility for scoring points is very focused on functional ability and takes no account of other limitations, despite the current reliability criteria taking this into account, which the need for prompting reflects. One participant with a mental health problem told me that they go days without washing or bathing even though they have the functional capability to do so. Their argument is that the outcome is the same (a negative impact on personal hygiene) and therefore it shouldn’t matter whether the cause is due to a physical impairment or a mental one. It is common among people with energy limiting conditions, for example, that people won’t have a shower unless they have to go out/interact with other people. In other cases, whilst maintaining personal hygiene might not be a strong enough motivator on its own, the prospect of showering to prepare for meeting someone could provide the necessary encouragement.

There can be hygiene issues associated with having to spend so much time in bed. Some stakeholders expressed the view that feeling sticky, dirty and being unable to wash is not good for mental health. Both the act of doing things and the consequences of not doing them may have adverse consequences for health.

For some people with an eating disorder the psychological impact of washing and bathing can be huge. This can be in relation to observing the naked body and/or the intimate nature of maintaining personal hygiene.^[294]

Some apparent anomalies were pointed out to me including the allocating of three points for help getting in or out of an un-adapted bath or shower. As this is a relatively high number of allocated points compared to others in the daily living section, some people I spoke to questioned the logic.

Event participants also expressed the view that more detail was needed to help understand aspects of daily living activities that are already in the application, including managing washing and bathing, managing toilet needs, and preparing food. They felt greater emphasis should be placed on how people complete those tasks and the impact it has on them, rather than whether they can be completed.^[295]

Many stakeholders would welcome the introduction of reference to intimate hygiene; it is interesting that it is not currently included. One person suggested that difficulties around intimate hygiene could potentially be worth more points due to being more psychologically difficult to manage.

Recommendation 50 : For the ‘washing and bathing’ activity to be reviewed so that

(a) the outcome of not being able to maintain personal hygiene is the determining factor and not the ability to undertake a particular activity

(b) the particular issues related to having an eating disorder are considered

(c) ‘managing intimate hygiene’ is included in the activity descriptor and considered when making an award.

Activity 5 – Managing toilet needs or incontinence

This activity considers an individual’s ability to get on and off an un-adapted toilet, to manage evacuation of the bladder and/or bowel and incontinence, and to clean afterwards. It does not currently consider the ability to manage clothing, climb stairs or move to the toilet. Managing incontinence means the ability to manage involuntary evacuation of the bladder and/or bowel, including the use of a collecting device or self-catheterisation, and cleaning oneself afterwards.^[296]

There were very few comments made that relate to this activity and as a result there are no recommendations for review or improvement. However, I did receive some relevant feedback from disabled people that is worthy of noting, including:

• it can use a lot of energy to get to and from the toilet
• while the need to go to the toilet may be harder to avoid or postpone than e.g. making a cup of tea, it is possible that prompting to go in a timely fashion may be needed
• at the more severe end of the scale there have been accounts of people crawling along the floor to get to the toilet
• some people may need assistance to clean up accidents, ‘poor aim’, etc.
• hygiene issues of ‘imprecise self-care’ can have a bad effect on mental health and well-being.

Activity 6 – Dressing and undressing

Daily living component Activity 6 considers an individual’s ability to put on and take off un-adapted clothing, including socks and shoes, that is suitable for the situation. The clothing must also be of an acceptable standard in terms of suitability for the weather and cleanliness. The type of clothing to be considered should be within the range that people would usually be expected to wear, including fastenings such as buttons, zips, laces etc.

A client’s preference to wear clothing which is particularly challenging to put on, for example, a full kilt outfit or ball gown, should not be taken into account if they could manage other types of clothing. The only exception to this is if the client is required to wear a particular type of clothing for cultural or religious reasons, in which case their inability to dress in those specific items would be relevant.

How often a client changes their clothes should be taken into account if their disability or health condition impacts the regularity with which they can do so. It is reasonable to expect an individual to put on one outfit each day and take their clothes off or change their clothes at the end of the day. If a client is unable to do so because of their disability or health condition, then they will score under this activity. However, if a client has a personal preference to change their clothes three times a day, an inability to do so would not be taken into account. The only situation in which this would be relevant would be if their disability or health condition was the reason for them needing to do so. For example, if a client has obsessive compulsive disorder (OCD) which means they become extremely anxious and distressed if they perceive their clothes to be dirty, it is reasonable that they need assistance to change their clothes numerous times a day.

This activity, like many of the others is very focused on the physical activity, the functions and functional ability required to put on and take off clothes and not on the outcome or impact of not being able to dress appropriately. The guidance for case managers states that ‘a case manager should evaluate an individual by their level of functional ability to select appropriate clothing, dress and undress. The key consideration should be the functions that are involved in doing so and the individual’s condition that may impact their ability to perform those functions’.^[297]

One stakeholder suggested that this activity should capture circumstances where an individual’s difficulty stems from the focus this activity places on their body, such as individuals with eating disorders. Adding a line about psychological constraints could be beneficial. Another person added that individuals who have had a mastectomy can find changing in and out of a bra psychologically challenging.^[298]

Other related comments include the following:

• some stakeholders suggested the removal of the distinction between dressing the lower and upper body because from the perspective of an individual they can either fully dress themselves or they cannot^[299]
• when assisting clients with application forms, timelines often pose challenges, particularly when individuals are estimating the time required for tasks like dressing and undressing
• the questions in the application form should allow for more detailed, descriptive responses which could better explain how applicants undertake activities such as bathing and all the steps this would involve
• the application form and accompanying guidance should be clear and explicit as to how the reliability criteria applies to this activity
• the energy cost of getting dressed mean that many people with energy impairments cannot even get out of bed, let alone get dressed. Unless there is an unavoidable need for social interaction, they may well not waste precious energy on getting dressed. Even then, they may need support and encouragement.

Recommendation 51 : For the ‘dressing and undressing’ activity to be reviewed so that consideration is given to:

(a) the outcome and/or impact of not being able to dress or undress rather than solely the functional tasks involved

(b) the potential psychological constraints of dressing and undressing

(c) removing the distinction between dressing the lower and upper body.

Activity 7 – Communicating verbally

This activity is concerned with people’s ability to express and understand basic and complex verbal information unaided. It considers an individual’s functional ability to communicate verbally (using words) with regard to both:

• receptive (receiving, hearing and understanding) communication
• expressive (conveying, talking) communication in one’s language of preference.

Few comments were made in respect of this activity, but some included:

• that there is no consideration for the environment in which a person is communicating, and for some people this is an important factor
• not being able to understand or reliably remember communication could have implications for managing medication
• at a few events it was reported to be hard to gain points for ‘communication skills’.^[300]

Activity 8 – Reading and understanding signs, symbols and words

It is most likely that individuals will have difficulty with this activity for one or more of the following reasons. (This list is not exhaustive.) It may be because they:

• are blind or have a visual impairment
• have a cognitive or learning disability.

Illiteracy is not taken into consideration for this activity, unless it is a consequence of a disability or health condition.

Most disabled people I engaged with had little or no comment to make with reference to this activity. However, some of the comments made included the following:

• one organisation raised that a person with learning disabilities can score zero points for ‘reading and understanding questions’, as they can read, but this did not capture difficulties comprehending or acting on the information
• an organisational representative raised the issue that people with a learning disability may be disadvantaged in terms of reading and understanding questions as it is easy for them to score nothing. They may be able to read but may struggle with comprehension, and with acting on what they have read.^[301]

Activity 9 – Engaging socially with other people face to face

Daily living component Activity 9 considers all aspects of an individual’s ability to engage socially with other people face-to face which include:

• interacting face-to-face in a contextually and socially appropriate manner
• understanding body language
• maintaining their own and others’ safety
• establishing relationships.

The environment in which the face-to-face interaction is taking place is a significant factor for some people. If one is immunocompromised, social interaction with people can put a person at risk.

It was in relation to this activity that we had the most discussion about the definition of ‘overwhelming psychological distress’. One stakeholder felt that there is more flexibility with Adult Disability Payment decisions when compared to PIP decisions, regarding the bar set to reach ‘overwhelming psychological distress’. However other stakeholders suggested that the definition is very strictly applied and open to differing interpretations. There was a suggestion made that decision-makers should focus on psychological distress itself, rather than requiring an activity to result in overwhelming psychological distress.

One stakeholder highlighted their view that the guidance in relation to Activity 9(c) for Adult Disability Payment^[302] is more restrictive than the equivalent case law for PIP. They noted a decision by the UK Supreme Court[303] in relation to PIP exploring the difference between Activity 9(b) and 9(c):

“The key case exploring Activity 9, descriptor c was decided by the Supreme Court. The main finding was that ‘Responding to the greater degree of disability [envisaged] requires the attention not just of another person, but of a person trained or experienced in assisting people to engage in social situations. That is what differentiates prompting for the purposes of 9b from prompting which is social support for the purposes of 9c. And where the support takes a form other than prompting, it will similarly only qualify for 9c if the claimant needs it to come from a person so trained or experience’.

In contrast, the [Social Security Scotland] guidance states: ‘The threshold for awarding daily living component activity 9 descriptor C for mental health conditions is much higher’, which is not suggested by the Supreme Court case. The guidance has a clear clinical focus in the summary it provides of what might be ‘expected’ to be available to establish that the descriptor applies. This might lead a case manager to conclude that the social support must be provided by a professional, which is explicitly not the case.” – Citizens Advice Scotland, response to the Independent Review of Adult Disability Payment Call for Evidence^[304]

Recommendation 52 : Revisit the current narrow definition of ‘overwhelming psychological distress’ to seek clarity on the extent to which anxiety means, for example, that a client cannot follow a route safely or to an acceptable standard; or how the stress of interacting with other people results in social isolation.

Recommendation 53 : For the Decision-Making Guidance on ‘engaging with other people face to face’ activity to be amended to take into account the mental health impacts that engaging with others involves for people who are clinically vulnerable to infection.

Activity 10 – Making budgeting decisions

Daily living component Activity 10 considers an individual’s cognitive ability to complete a budgeting task. It does not consider their ability to leave the house to pay bills, the handling of money or where the individual is unable to pay bills due to a lack of money. Simple budgeting decisions are those that are involved in calculating the cost of goods and working out how much change should be given following purchases. Complex budgeting decisions include decisions, such as calculating household and personal budgets, managing and paying bills, and planning future purchases.

Few comments were made in relation to this activity but some things to consider include the following:

• if someone has a financial guardian, it is clear that they have difficulty managing money and therefore this should mean an automatic application of the highest points
• some disabled people highlighted the point that accessing in-person banking is becoming increasingly difficult, so not being able to use technology is relevant to this activity
• some welfare advisers noted that they are aware of instances where clients have not been awarded points for this activity because they have a banking app on their phone. However, having a banking app or being able to check your balance is not the same as being able to manage money.^[305]

Recommendation 54 : For clients who have an appointed financial guardian to receive automatic entitlement to the maximum number of points in the ‘making budgeting decisions’ activity.

Mobility component activities

A public consultation^[306] on the eligibility criteria for the mobility component of Adult Disability Payment ran between 31 January and 25 April 2023. The consultation aimed to gather a broad range of views on alternative approaches to the mobility component and identify any gaps, issues or unintended consequences of changes suggested by respondents.

The main request was for a holistic, person-centred and flexible approach to decision-making, considering each application holistically, including the wider context of clients’ lives and circumstances, which is covered earlier in the report. Some other suggestions were raised repeatedly, including:

• for the Adult Disability Payment criteria to consider, clarify and include additional aspects of mobility beyond simply the ability to move a certain distance or plan and execute a journey
• to clarify what information is being sought in response to the questions posed about someone’s mobility needs
• ensuring all aspects of mobility are considered, including a range of additional impacts reflecting clients' lived experiences before, during and after moving around
• that the criteria should not judge movement in isolation from the reality of moving around and should consider the complexity of the circumstances people encounter when moving
• broadening the eligibility criteria to consider other conditions, including mental health problems, and a wider range of mobility aids
• that the mobility eligibility criteria are not appropriate for those with fluctuating conditions.

Activity 1 – Planning and following journeys

An individual is entitled to the mobility component if the individual’s ability to carry out mobility activities is limited or severely limited by their physical or mental health problem(s) and the individual meets the required period condition i.e. 50% of the time.

This activity considers an individual’s ability to plan and follow the route of a journey which means to navigate and make their way along a planned route to a planned destination.^[307]

This activity is relevant for people whose mobility is affected by mental health, cognitive and sensory impairments, and physical problems. Cognitive impairment includes orientation (understanding where, when and who the person is), attention (including awareness of risk and danger), concentration and memory.

“The planning and following journeys criteria are overly simplistic. This is again the main reason for them being difficult for applicants to interpret and understand. They lack clarity and detail and use a lot of vague subjective terms to describe the criteria. One person’s interpretation of what constitutes a journey may be different from the next person's. What is classed as familiar will vary from person to person adding a great deal of subjectivity into the application process. This subjectivity will then be replicated in the decision-making process as this will add in further level of individual interpretation.” - MS Society Scotland, response to the Independent Review of Adult Disability, review of the mobility component^[308]

CAS’s ongoing research highlights concerns that the application form does not make clear that sensory and mental health-based impacts are both included and of equal relevance in this activity. Advisers have observed that clients don’t necessarily grasp that ‘needing company to go out’ is as relevant as ‘someone needing a white stick’.^[309]

When asked if there was an opportunity to change any specific aspects of the planning and following journeys activity the following themes were each mentioned by a few respondents and were also raised in consultation events and at some stakeholder meetings:

• inclusion of variable or fluctuating conditions, such as providing space in the application form to allow those with fluctuating conditions to explain their experiences
• suggestions about points-based system changes, such as providing more points to those clients who need assistance from another person to get around
• suggesting that practitioners have specific training, including an understanding of visual impairments and how to speak with clients who have specific conditions
• as two individual respondents requested, ensuring that practitioners listen and believe the information provided to them
• consideration of environmental factors, public transport routes and difficulties during the journey
• a sense that the activity does not take into consideration those who are cognitively able to plan and follow a journey but their ability to do so fluctuates due to things like anxiety and psychological distress
• whether there is a meaningful distinction in practice between planned and unplanned journeys, particularly for people with fluctuating conditions – the same individual may feel quite capable of carrying out an unplanned journey on one day and feel so anxious as to be unable to undertake a planned journey on another
• consideration of clients’ experiences during the journey, such as impacts on mental health if the journey does not go to plan or anxiety related to specific types of journeys but not others
• the need to explore frequency/how often people leave their home
• the necessity of better understanding of clinical risk management for vulnerable people.

Section 2 of the consultation asked respondents to consider the clarity of the planning and following journeys activity, to comment on feedback received about the criteria through previous research, and to explain any suggested changes to the planning and following journeys activity. Two further themes were raised. These were the language used, and expanding the definition of orientation aids.^[310]

Many respondents shared concerns about the language used in the planning and following journeys criteria and suggested changes. Research conducted by CAS has also highlighted the impact of the use of definitive language throughout the application. The words ‘at all’, and ‘never’ caused particular concern, and the related prevalence of what are being experienced as binary questions. The research also identified that clients have limited understanding of the interaction between mental and physical health impacts and mobility needs, and frequently artificially separate mobility and daily living needs.^[311]

Comments included criticism of the term ‘overwhelming psychological distress’, which respondents found to be limiting, subjective and unclear, and suggested it should be defined, amended or removed. The descriptors can be interpreted in a restrictive manner, construing PIP case law as meaning that only if a client is experiencing ‘overwhelming psychological distress’ would anxiety be a cause of being unable to follow the route of a journey.

“In general terms, the following journeys criteria are easier to understand than the moving around criteria, as they are not reliant on arbitrary numerical distances that may be difficult to relate to daily life. However, we are concerned that the phrase ‘overwhelming psychological distress’ is poorly defined, and it may not be clear to applicants what this means in practical terms” – Health and Social Care Alliance Scotland (The ALLIANCE), response to the Independent Review of Adult Disability, review of the mobility component^[312]

“ ‘Overwhelming psychological distress’ is a very broad definition that might not be clear to applicants. It would be particularly useful to incorporate explicit examples. This could be approached in a way that acknowledges feelings and difficulties, such as anxiety, fear of getting lost or missing taxis/buses or fear of encountering unanticipated difficulties.” – Scottish Association of Social Work, response to the Independent Review of Adult Disability, review of the mobility component^[313]

‘Overwhelming’ indicates a very high bar for distress, when lower levels may still significantly impact a person’s ability to plan and follow a journey. It may be more useful to talk in terms such as anxiety, fear of getting lost and fear of encountering hostility, but to do so in a non-stigmatising way that doesn’t suggest it’s unreasonable for people to be anxious or have such fears.

The impact is primarily on those living with mental health problems, neurodiverse people, and people who have learning disabilities or difficulties. Some descriptors within this activity appear to apply to those who are visually impaired and so have difficulty navigating, whereas other descriptors apply to those liable to experience overwhelming psychological distress if they go outside unaccompanied or at all. A liability to get lost due to a physical or mental health problem is relevant to whether a client can follow the route of a journey or not.

One stakeholder had highlighted in their call for evidence submission that the Adult Disability Payment eligibility criteria may be interpreted more strictly than PIP in relation to descriptors 1(d) and 1(f):

“The argument presented in the landmark case MH v Secretary of State for Work and Pensions^[314] was that where claimants have anxiety, descriptors 1(d) and 1(f) are applied in the light of descriptors 1(b) and 1(e), with due regard being had to the term ‘overwhelming psychological distress’. However, it is acknowledged that this is only one scenario in which these descriptors apply.

Claimants can potentially score in several descriptors in the activity if they cannot commence journeys because of their condition or need prompting or another person to accompany them to make a journey. The points variation across the descriptors reflects the difference between someone who requires prompting to leave the house and someone who is unable to follow a journey unless accompanied by another person.

The (Social Security Scotland) Decision Makers Guidance, through the illustrations used, gives the impression that these descriptors 1(d) and 1(f) only apply on mental health grounds where restrictions constitute overwhelming psychological distress. People who do not meet the reliability criteria, or who are experiencing a complex interaction of symptoms affecting their ability to navigate and make their way along a route, would be inappropriately potentially excluded by such an interpretation.” – Citizens Advice Scotland response to the Independent Review of Adult Disability Payment Call for Evidence^[315]

Similarly, several people noted confusion about the meanings of ‘orientation aids’, ‘planned’, ‘unplanned’, ‘familiar’ and unfamiliar’, while a few suggested ‘journey’ could be confusing. Respondents explained that unclearly defined or overly simplified language makes it difficult for those responding to describe their experiences accurately and makes the job of the case managers and practitioners more subjective.

Some respondents requested that the definition of orientation aids include technology like satellite navigation tools and mobile phone map applications that respondents noted are crucial to their ability to move around. This was also raised in stakeholder events, where discussion included the importance of aids in getting around. A few others also suggested that a family member or carer travelling with a person to provide support should also be included as an aid regardless of whether they are acting in a supervisory role or providing another type of support.^[316]

For some the planning and journeys section seems overly focused on physical ability.

A need for greater consideration of mental health in relation to this activity was mentioned on several occasions. These comments often focused on clients’ experiences during the journey, such as the impacts on mental health if the journey does not go to plan, or anxiety related to specific types of journeys but not others.

The Neurological Alliance state that neurological conditions cause a variety of physical issues, but they also often impact on mental health. Their ‘Together for the 1 in 6’ report, which was published in 2022, revealed that 80% of adults with a neurological condition said their condition negatively impacts their mental health. 59% said their condition caused moderate to severe pain. Eligibility criteria do not take into account pain, fatigue or mental health problems like anxiety, all of which can disrupt the intention to undertake a journey or might disrupt the journey itself.^[317]

“For people with dementia, particularly those at the early stages of the condition or who experience variability in their symptoms and who may be unwilling to acknowledge the changes in their cognition, may struggle to identify or describe the unpredictability of their condition. For example, they may manage to plan a journey but not follow it and may mask their difficulties by assuming that they can manage one element of this task so indicate that they can do all of it.” – Neurological Alliance of Scotland response to the Independent Review of Adult Disability Payment, review of the mobility component^[318]

For fluctuating conditions like epilepsy, post-polio syndrome and MS, both physical and cognitive fatigue are directly impacted by the symptoms someone is having. Despite safety currently being one of the reliability criteria, this does not appear to be fully realised in practice, e.g., when someone becomes overly fatigued and falls whilst out on a journey due to symptoms flaring up, or experiences from a seizure, and needs help to get home.

For conditions and impairments related to fatigue and those where people may be at risk of infection if going on a journey, certain issues were raised by stakeholders (such as Inclusive New Normal^[319]), including:

• that travelling can mean having to go into high-risk environments (crowded, maybe poorly ventilated public transport) – having to make essential journeys can be extremely stressful
• that people at high clinical risk may need not just prompting and encouragement to travel but action to mitigate risks
• that it can be very hard to plan a journey with severe brain fog – it can mean a person cannot work out how to order a taxi, drive, work out any other way to get there, check train and bus times, etc.
• that people with energy impairments may need to plan at a very detailed level; for example, ‘how many steps to the bus-stop’, ‘is there somewhere to rest’, ‘if bus stop is then closed, you’re stuck’ – they must think of every scenario
• struggling to plan a route which is as risk-free as possible or not being able to contemplate any journey because it would cause overwhelming psychological distress to the client
• that there are many people who remain at high clinical risk following Covid; many have been living in near-lockdown, hardly leaving their houses, or having to endure extreme stress of taking risky journeys; the safest ways to travel are in your own car, and (next safest) by taxi (though that is far from risk-free – windows hardly open on some models and not accessible to the passenger)
• that as a result of not being able to travel safely, a wide range of additional costs are incurred (delivery, home visits, heating, etc)
• the stress of having to ask others to put a mask on, not knowing whether you’ll encounter hostility for wearing one, people angrily refusing to believe in the reality of your situation; wheelchair users may have additional stress of taxi-drivers leaning across you to secure the chair, staff assisting you onto train, etc.

Crohn’s & Colitis UK raised specific concerns about how mobility criteria do not currently account for the impacts of bowel conditions that may cause incontinence. The need to plan for access to toilet facilities may represent an additional further difficulty for many disabled people, with uncertainty around whether facilities will be open, accessible, free to use, and of good quality, all liable to contribute significantly to feelings of anxiety about planning journeys. Especially in the context of many public toilets being closed, having limited opening hours, or charging for access, some people living with bowel conditions find their mobility limited not by their own physical capability to walk, but because they cannot be assured they will have access to the facilities they need. A sudden need to use a toilet mid-journey might lead to heightened anxiety about leaving the house in the future.^[320]

Positive comments received in relation to this activity include:

• the effectiveness of the planning and following journeys section of the application form in that the form was clear, while a few noted it was an improvement on the PIP form
• the changes made to how planning and following journeys criteria are described and evidenced have had a positive impact
• some others suggested the form was more inclusive of those without physical disabilities and clearly spoke to those with mental health problems
• the examples given of the difference between familiar and unfamiliar journeys are reasonably clear and useful
• the prompt with a list of mental health problems that may result in anxiety about traveling may help make clear to applicants there are legitimate and understood reasons they would feel that way
• some people welcome that stigmatising behavioural observations have been removed from the process and agree that these perpetuated unhelpful stereotypes.

Recommendation 55 : To review the ‘planning and following journeys’ part of the mobility component to:

(a) clarify the language used

(b) clarify the definition of orientation aids

(c) provide more clarity to clients and case managers on the definition of ‘overwhelming psychological distress’, which respondents found to be limiting, subjective and unclear

(d) ensure the criteria does not remain overly focused on physical ability and takes into account mental health problems and delayed impact (e.g. pain, fatigue, cognition)

(e) better include the impact of variable or fluctuating conditions

(f) consider environmental factors, public transport routes and difficulties that might arise during a journey

(g) take into account the frequency and routine of how often people leave their home

(h) better understand clinical risk management

(i) account for the impacts of bowel and bladder conditions that may cause incontinence.

Activity 2 – Moving around

The moving around activity considers a person’s ability to stand and move specific distances without severe discomfort. While this considers movement on flat and outdoor surfaces, such as pavements and kerbs, it does not consider walking up slopes or stairs. The criteria consider how easily a person can stand and then move up to 20 metres, up to 50 metres, up to 200 metres and above 200 metres. Application guidance asks clients to consider factors that affect their experience of moving around. These include how quickly a person can move; the risks of falling or injury; breathlessness, pain or fatigue; the way a person moves; and symptoms or side effects from moving around.

The reliability criteria apply so when making a decision in relation to a client’s mobility a case manager must consider the person’s ability to be able to move around ‘safely’, ‘to an acceptable standard’, ‘repeatedly’ and ‘within a reasonable time period’.

“The determination of how these factors affect a claimant’s ability to move around provides significant discretion in how a Social Security Scotland assessor understands and assesses a claimant’s individual ability to walk around which sets the conditions for disparity in decision-making assessments.” – Alzheimer Scotland, response to the Independent Review of Adult Disability Payment, review of the mobility component^[321]

“People who are new to the benefits system do not realise - and the form doesn’t tell you - that the issue is not just how far you can walk, but whether you can do it ‘reliably’ i.e. safely, to an acceptable standard, repeatedly and in a reasonable time. While the form highlights pain, fatigue and breathlessness, it does not mention speed, issues with gait or uncontrolled movement which may mean that people are not moving to ‘an acceptable standard’, or the need to be able to repeat the distance - all of which are common for people with Parkinson’s.” – Parkinson's UK Scotland response to the Independent Review of Adult Disability Payment, review of the mobility component^[322]

“Many of our members and people with lived experience are calling for the 20-metre rule and 50% rule to be removed from the criteria. We understand these are in place to measure the applicant’s mobility, however, this is a numerical criteria that does not consider a person’s daily life and take different environments into account. Instead of this criteria, the application should measure how a person is able to move within their local and wider area and their home and the degree said movement results in pain and exhaustion. This would allow the application and assessment to move away from a strict measurement and measure capability more effectively.” – Scottish Association of Social Work response to the Independent Review of Adult Disability Payment, review of the mobility component^[323]

Formal inclusion of pain and exhaustion and other physical effects allows one to measure a person’s capabilities beyond just the distance they might be able to travel and recognises the true effects of their condition on their quality of life and wellbeing.

Clarifying the language or meaning of the moving around activity criteria was requested by many respondents to the consultation, for example, by using examples and real-life scenarios. Several respondents also argued that the criteria would benefit from a clearer definition of what moving means. While there was appreciation of, and support for the visual examples now included in the application form, the need for clearer images was mentioned by several respondents.

The inclusion of impact prompts, such as pain and breathlessness, is likely to help provide more detailed information in support of an individual’s application. However, it is not entirely clear whether a person’s responses to these prompts are taken into consideration within the points system, even though there may be significant differences between two people who can walk the same distance unaided. If someone can walk 50 metres but is in pain or exhausted for a significant period afterwards, that should potentially be given more weight than someone who can walk 50 metres with only mild or brief impacts.

Changing the distance measure in the moving around activity was frequently suggested as another opportunity for improvement. These responses ranged from changing the 20-metre measurement in the criteria – the ‘20-metre rule’ – back to 50 metres, to not using any distance measures at all. Respondents argued that 20 metres is an unrealistic and limiting distance. They suggested a better system might be one that focuses on the qualitative aspects of movement, i.e., how people move, captured through open-ended questions and a flexible approach dependent on people’s real-life experiences. Several suggested that these changes would improve disabled people’s circumstances and independence and positively impact those with fluctuating conditions as the decision-making process would be more inclusive, holistic and nuanced.

The SCoRSS coalition is calling for the removal of the 20-metre descriptor; this descriptor means that clients who are assessed as being able to walk over 20 metres are not entitled to receive the enhanced rate of mobility support and are therefore ineligible for the Motability scheme, a lifeline for many. SCoRSS believe that the descriptor is arbitrary, devastating in its impact, and not consistent with the purpose of Adult Disability Payment to support clients to meet the additional costs associated with their health profile. The use of this descriptor is also incompatible with a commitment to a system of social security that puts respect for the dignity of clients at its heart, recognises the role of social security in the realisation of other human rights, and that is evidence-based.^[324]

A survey of 300 potential Adult Disability Payment clients, conducted by Inclusion Scotland during February and March 2021, found that an overwhelming majority (81%) expressed the view that ‘20 metre’ criteria should not be retained in Scotland.^[325]

“A shift from the fixation on numerical distance walked, to a more person-centred approach of how someone moves (whether aided / assisted or independently and what the impact of moving around is on each individual) would yield a more accurate representation of someone’s level of disability.” – Neurological Alliance of Scotland response to the Independent Review of Adult Disability Payment, review of the mobility component^[326]

“Mobility isn’t just how far you can walk; it's about the freedom to do things independently… A more holistic approach is needed remembering not every person is the same. Mobility should be based on the individual person and their overall disability challenges.” – Organisation^[327]

“The restrictive element of the ‘20-metre rule’ has caused unnecessary stress and in most cases, has exacerbated their PPS symptoms... The recommendation is to increase the distance to a more realistic 100-200 metres, or indeed to take away the requirement altogether.” – Scottish Post Polio Network, response to the Independent Review of Adult Disability Payment, review of the mobility component ^[328]

“In our clinical experience of treating individuals with cerebral palsy, we believe that focus must be given to the quality of an individual's mobility, rather than a simple emphasis on how far an individual may be able to walk. A more nuanced approach will give a clearer picture of the reality of the cost to the individual of achieving mobility. An individual’s attitude to mobility is also important: some want to continue to stay mobile (walking) with/out a mobility aid so they don’t ‘look’ disabled. They often use compensatory strategies to keep on their feet (e.g. shifting weight away from a painful area) which can cause deterioration and further asymmetry in their posture, requiring more effort of movement, causing more pain, and premature wear and tear to joints and muscle tightening. Longer-term health and support consequences for them should be considered, as the consequences of not being able to access help for their mobility are severe.” – Cerebral Palsy Scotland, response to the Independent Review of Adult Disability Payment, review of the mobility component^[329]

Other issues raised and changes proposed included:

• capturing explicitly the reliability criteria (Research conducted by CAS has highlighted that advisors do not consider that the ‘how do you feel after’ questions (in this context ‘after you have walked this far, does this change how you feel?’) effectively convey and capture the reliability criteria, which advisors feel are not understood by clients)^[330]
• if keeping a scoring system, address the anomalies that mean someone who can walk the same distance as another person without an aid (8 points) scores less than someone who can walk the same distance with an aid (10 points)
• the feeling among many respondents to the DWP consultation on PIP was that there was little evidence to show that an individual who could walk a little over 20 metres would face lower costs than an individual who could walk less than 20 metres^[331]
• revising the criteria, so it is more in line with the social model of disability
• criteria that reflects experiences of moving in the built and natural environments
• walking in different weather conditions, on a gradient or slope, as well as on stairs and a variety of surfaces
• that criteria should reflect navigable access at destinations, such as ramps, lifts, and braille signs: the differences between rural and urban environments and road closures or roadworks that complicate familiar journeys
• that criteria should reflect access to necessary community facilities, such as shops, schools and healthcare and navigating environmental hazards like crowds or furniture
• consideration should be given to how people move around their house functionally
• the purpose of travel and subsequent difficulties faced at destination
• the needs of those with hidden disabilities who may be unable to travel from home due to the availability of specialised supports and resources, such as toilets or resting places
• that consideration should be given to the impact of certain medicines on movement.

“The distance doesn't matter as much as the environment. Things that should be considered more are ability to walk uphill or downhill, taking stairs and other issues with moving around.” – Individual response to the Independent Review of Adult Disability Payment, review of the mobility component^[332]

The rigid nature of the mobility component is something I am keen to address. The sense that strict distances are arbitrary, not a useful measure, and do not adequately cover progressive or fluctuating conditions, has been a consistent criticism.

People explained they find it hard to meaningfully appreciate distance set out in terms of metres. People told me they have difficulty picturing how long 20 metres is and suggested something more relatable (e.g., how many houses could you walk by) might make questions easier to answer more accurately. Some disabled people felt not enough credence was given to how movement affected them. For example, someone may be able to walk 200 metres at one time, but that would mean they could not do any other activities that day. I also heard that the way mobility is currently considered fails to take into account the full complexities of a client’s situation. That is, the Adult Disability Payment distance test seems to take place in a hypothetical world of flat surfaces devoid of obstacles. The difficulties people with chronic fatigue face are that they may be able to walk but don’t because they have to stay within their energy limits, or they risk a major setback. This looks like choice but is, in fact, necessity.^[333]

In 2013 when DLA was replaced by PIP for people of working age, many of the criteria that meant a person was eligible for the higher rate of the mobility component for DLA changed. One criterion of the higher rate of the mobility component (of ‘being virtually unable to walk without severe discomfort’^[334]) was removed. PIP introduced the concept of looking at whether the person could stand and move a fixed distance. The original descriptors included in the UK Government’s consultation set this distance at 50 metres. However, when the UK Government responded to the consultation, the threshold was subsequently replaced with 20 metres.[335] The 20-metre rule was replicated by the Scottish Government when determining the criteria for Adult Disability Payment on the basis that this approach would avoid a two-tier system, whilst case transfer was ongoing.[336]

“The continued application of mobility criteria, including the 20 metre and 50% rules have been disappointing, and the ALLIANCE have repeatedly joined with partners across the third sector and people with lived experience to call for these to be reformed, if not abolished entirely.” – Health and Social Care Alliance Scotland (The ALLIANCE), response to the review of the mobility component^[337]

For people with a degenerative neurological or inflammatory condition such as Parkinson’s or MS, the issue is not about the ability to manage a set distance, but the summative effect of functional or recreational use of that distance.

It was particularly concerning within the consultation document to see that two-fifths of respondents to a survey^[338] highlighted that they were effectively discouraged from being active due to the fear they would lose their entitlement to social security. The health benefits, both physical and mental, arising from exercise or otherwise being active are well established. Disabled people already face higher barriers to accessing sport and physical activity. Therefore, further discouraging individuals from being physically active may have negative effects on their health and wellbeing in the longer term, potentially including the worsening of their condition(s).

Human rights are interrelated and interdependent, and the realisation of one right should not have any negative impact on the realisation of other rights. Disabled people should have the confidence that they will be able to access social security payments necessary to support their additional costs, and that they can do so whilst also engaging in sport, exercise and other physical activity that may both improve their overall health and support their participation in society.

Many stakeholders welcome the approach of supporting information to confirm mobility issues, operating on a balance of probabilities basis, rather than an automatic requirement for a consultation. In addition, many disabled people feel it is a significant improvement that where a consultation does take place, any informal observations must be shared with clients, and they must be given an opportunity to respond. By trusting supporting information to be accurate and disallowing secretive informal observations, these changes have created a more dignified approach.

However, it was suggested that these positive changes relate less to the ability of Social Security Scotland to understand a person’s mobility needs, and instead to how individuals experience the application process.

Whilst I recognise there needs to be a way to determine a person’s mobility needs, I do not consider that the strict application of arbitrary measurements is the best way to do this. A more flexible approach should be taken which, rather than setting distances, considers a person’s ability to move around their own home, local area, and other places they may frequent in daily life – such as their place of education or employment, shopping and leisure facilities, and healthcare services. This should account not just for the physical ability to travel within those areas, but also the degree to which doing so results in pain and exhaustion, and whether there is reliable access to facilities such as toilets and comfortable rest stops.

One example that could be adopted is the way in which people are currently assessed by the local authority for a Blue Badge.^[339] Under this scheme, a person is automatically entitled if they have a Certification of Blindness or Defective Vision BP1 (3R) or Certificate of Vision Impairment (CVI) or a previous equivalent, signed by a Consultant Ophthalmologist.

In March 2020, Transport Scotland launched a 12-month trial (later extended to 24 months) to test a fast-tracked prescription model for applicants with Motor Neurone Disease (MND). The trial involved MND nurse specialists assessing their patients against the blue badge eligibility criteria and completing, and submitting, a streamlined application form on their behalf. Individuals with MND are not required to submit a blue badge application form or go through a formal assessment with local authorities. Additionally, these applications do not require local authorities to request proof of ID and address. The MND nurse specialist’s declaration is sufficient evidence that these individuals have had their identify confirmed via NHS systems. The fast-tracked prescription model was formalised as a permanent process for blue badge applications for applicants with MND in Spring 2022. Transport Scotland will aspire to explore and expand the scope of the fast-track model, beyond MND, for other conditions that will improve the overall experience of applicants.

To qualify for a Blue Badge an applicant must have a permanent and substantial disability that means that they are unable to walk, or means they are virtually unable to walk and/or have no awareness of traffic and are likely to compromise their safety, or the safety of others as a result of a diagnosed mental disorder or cognitive impairment.

Rather than answer questions on how many metres a person can walk aided or unaided, applicants for a Blue Badge will need to demonstrate that their ability to walk is affected to the extent that they would be unable to access goods and services unless allowed to park close to shops, public buildings and other facilities. Consideration is given in the Blue Badge Scheme Local Authority Guidance (England) 2014^[340] to the applicant’s ability to negotiate the types of pavements or roads they would normally expect to find in the course of walking outdoors. ‘No pavement or road is absolutely flat therefore slopes and or uneven surfaces should be considered in the course of a mobility assessment.’

Excessive pain reported by the applicant when walking, or as a consequence of the effort of walking is considered as is breathlessness reported by the applicant when walking, or as a consequence of the effort of walking. ‘It does not matter whether excessive pain or breathlessness occurs at the time of walking, or later - what counts is that it is a direct result of their attempt to walk, and that physical activity is considered detrimental to the applicants diagnosed medical condition.’^[341]

How far a person can walk without experiencing severe difficulty is also taken into account. Rather than limiting decision-making to ‘activity’ and numerically defined distances, each factor is considered as part of a holistic assessment which contains all factors that are impacting on an applicant’s ability to walk.

An independent mobility assessment is required to assess eligibility under the ‘unable to walk or virtually unable to walk’ criteria, particularly if there is a lack of clarity or understanding in the information provided by the applicant. If this approach was adopted for Adult Disability Payment, it runs the risk of re-introducing PIP type assessments which are universally disliked.

However, this type of approach may allow for better reflection of individual circumstances. For example, for people living in urban versus rural areas, where it should be recognised that it is not simply individual physical capability that is relevant to how an individual’s mobility is affected, but additionally the infrastructure and services around them. Formal inclusion of the impacts of pain and exhaustion within the criteria is important, to recognise the serious negative effects that these can have on quality of life and wellbeing, as well as the additional costs of managing those conditions.

I believe these changes would lead to a process that is more supportive and understanding and one that takes account of a person’s unique personal circumstances, rather than a perceived tick-box exercise with strict numerical measurements. Clients living with chronic pain may benefit from explicit recognition of pain as a barrier to mobility. Similarly, for applicants with fluctuating conditions, less strict criteria may result in them being eligible for a higher rate of payment, which is likely to improve quality of life and ultimately reduce poverty. These changes may also have positive impacts for applicants with mental health problems, as they may feel that the process is more supportive and understanding of them.

“It doesn’t matter whether it’s two metres or 20 metres, if there are changes to an environment or route, then I can’t navigate safely – the knock-on effect is social isolation, a reduction in confidence and independence and increased costs - as when I do go out, I call a taxi instead to get me where I need to go.” – Royal National Institute for the Blind Scotland response to the Independent Review of Adult Disability Payment, review of the mobility component^[342]

Recommendation 56 : Review the eligibility criteria for the mobility component to remove reference to a fixed distance and replace it with:

(a) the real-life experience of the client

(b) their living environment inside and outside of the home

(c) availability and accessibility of public transport

(d) whether or not they use aids to assist them in moving around

(e) the impact of moving around and exertion (e.g. fatigue, post-exertional malaise, breathlessness and pain).

Recommendation 57 : Review the guidance and training for case managers and practitioners to ensure improved understanding and accommodation of issues such as delayed impact, exhaustion, pain and anxiety.

Recommendation 58 : To consider any learning and/or good practice from the Blue Badge scheme in relation to establishing a person’s mobility needs.