Independent Review of Adult Disability Payment: final report - summary

Chapter 4: A Better Future

Modernisation

Throughout the course of the Review, I heard from many people and stakeholders that various aspects of Adult Disability Payment should be modernised to better reflect the modern-day experiences of disabled people.

"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

The most prevalent theme within the “daily living activities” element of the online consultation was suggestions for new activities as part of the eligibility criteria.

For example, I received views from the online consultation 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.

I also heard from participants at engagement events that additional areas should be included in the eligibility criteria. For example, IT literacy, quality of life, communication support, filling in forms, and being part of a community. I also heard from several people that household cleaning should be included.

Adopting a human rights social model of disability

I heard from several respondents to the online consultation that there should be a move away from the medical and deficit-based model of disability to help facilitate a more rights-based approach in Scotland.

I heard from several participants at consultation events that the challenges they associate with the deficit-based model include:

• finding it difficult to think about their “worst day” or open up about their difficulties
• not perceiving themselves as disabled
• interpreting the questions differently than others due to ambiguity in the questions
• for people with fluctuating conditions, challenges associated with recognising and conveying their support needs given that their ability to do things might vary at different points in time.

I heard from people living with long term conditions 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.

"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

I received consultation responses that highlighted the devastating impact a deficits-based model can have:

"It feels like you’re having to beg for help.”

- MS Society Scotland response to the Independent Review of Adult Disability Payment Call for Evidence

Furthermore, I heard from a few participants from the online consultation that the form or decision-making process were overly focused on people with physical disabilities. For example, I heard from some people in consultation events that the current eligibility criteria are not accurately capturing the needs of neurodivergent individuals or those diagnosed with mental health problems.

Therefore, I believe that a better approach would be one that merges what is relevant in the medical and social models on the basis that disability is always an interaction between features of the person and features of the overall context in which the person lives.

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.

I believe that the current criteria and decision-making processes should be reviewed to further embrace a social model of disability by adopting an approach that merges what is relevant in both the medical and social models. 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 an outcomes-based social model can make when framing questions and determining eligibility.

An individualised decision-making model

I heard from many disabled people throughout the course of the Review that they favour a system where Social Security Scotland looks at a person’s overarching need for help, rather than looking at specific activities.

"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

A more individualised decision-making model is likely to lead to more detailed questions, which clients may find onerous and could lead to more subjective outcomes.

Several consultation respondents suggested that some people find it hard to see how the activities relate to their own lives and, most commonly, 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 that I received from consultation responses was for a more holistic, person-centred and flexible approach to decision-making. Several people said that the current system used to understand disabled people’s needs is not fit for purpose for many reasons, e.g., some feeling that the rules or questions were too rigid to allow people to fully articulate how their conditions impacted them.

I brought together stakeholders from the fields of social security and welfare advice for a roundtable session where there was overwhelming sentiment against reintroducing, by another name, DWP-style assessments. No one was in favour of introducing more subjectivity to an already inconsistent decision-making process, which could also make it more difficult to challenge a determination.

"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

There are some overarching principles that Social Security Scotland could adopt to enhance the experience and ensure eligible people receive the right levels of support:

• 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

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.

The Review Secretariat commissioned a search of existing literature which found there was no previous work 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). 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 need an advanced understanding of the conditions of the people they are determining eligibility for. Therefore, this approach could require input from multidisciplinary teams.

Alternatives to a points-based system

The conversations I had throughout the Review highlight that the points-based system used for decision-making is widely disliked, with several respondents making the case for measuring need and/or eligibility to be based on a social model of disability.

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 (Adult Disability Payment).”

Health and Social Care Alliance Scotland (The ALLIANCE) response to the Independent Review of Adult Disability Payment Consultation

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

• more dignified for disabled people
• mirror the 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.

I heard calls for greater transparency in how points are allocated at a few events by, for example, including the descriptors and corresponding points on the application form to help people understand the points system and why the form asks the questions it does.

I received several responses through the consultation that suggested people with certain conditions may find it more difficult to gain points. In addition, I heard suggestions that features or symptoms of those conditions that could result in people having a limited understanding or clarity about the daily living activities and how they applied to them, could potentially lead to clients not receiving an award.

In my engagements, I heard calls to address some of the perceived anomalies in the current system, e.g., a person receiving more points for being able to walk up to 20 metres without an aid than someone who can walk the full 20 metres with an aid.

I considered several alternative models for the eligibility criteria, e.g., beginning again, or considering the application of the International Classification of Functioning, Disability and Health as well as considering the way local authorities in England undertake social care assessments.

However, stakeholders have told me that there is familiarity to the current imperfect system and replacing it wholescale may cause more harm than good.

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 the current Adult Disability Payment rules, a descriptor applies to a person if it reflects how their condition or disability affects them for more than 50% of the qualifying period.

I heard mixed views from disabled people and stakeholders about people’s experiences of the application process in relation to fluctuating conditions. Some felt that there have been positive changes made to improve how applicants experience the process of completing the application, as well as asking about fluctuating conditions. Others felt that the changes have limited to no impact on how much Social Security Scotland understands the impact of fluctuating conditions.

"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

Many people with MS who took part in the Review welcomed the changes to the application and consultation process but felt that they do not go far enough to recognise the true needs of people living with fluctuating conditions.

Respondents to the consultation about the criteria for fluctuating conditions suggested problems with using overly complicated language, including using fixed or confusing statements and the lack of examples or sufficiently detailed guidance. I received several suggestions to simplify or further clarify the criteria and to ensure the application form allows sufficient space to adequately describe the impact of the condition or multiple conditions.

One stakeholder stressed the importance of developing a clearer understanding of the consequences of engaging in physical activity, particularly the post-exertion effects.

I also heard several other recurring themes throughout the Review:

• fluctuating conditions can be hard for people to describe
• time limits to complete the application make the activity more challenging
• the importance of asking about the impacts of daily activities on people with fluctuating conditions, rather than just asking if they can achieve certain tasks
• mental health and physical health can fluctuate independently of each other
• when experiencing a flare up, a person may have limited physical and emotional energy, reducing the ability to solve problems, communicate or do activities that they may need to do 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
• the 50% rule is not a useful measure.

I frequently heard criticisms of the 50% rule (where a person must show they meet a descriptor on or over 50% of days in a 12-month period) which can be challenging for people to understand or even more difficult for them to articulate, as fluctuating conditions have different impacts over time.

"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.”

- Individual response to the Independent Review of Adult Disability Payment consultation

I heard from some stakeholders 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.

I believe that a more flexible approach that considers frequency as well as severity of impact, without an arbitrary threshold, may represent an improvement and be more in line with a human-rights based social model of disability.

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 has advocated for the introduction of a “substantial risk” provision to Adult Disability Payment. 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 UC. 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. 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. Despite the differences between the purposes of these benefits and Adult Disability Payment, 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.

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

Social Security Scotland case managers use rules to decide if someone qualifies for Adult Disability Payment. These rules are known as the eligibility criteria. Adult Disability Payment has two parts: a daily living component and a mobility component. A person may qualify for one, or both components. Both components have a standard and an enhanced rate. A points-based system determines which component(s) or rate the person qualifies for.

I recognise the strength of feeling to improve the current eligibility criteria to ensure consistency with the aspirations in the Social Security Charter.

"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

Daily living component

I received mixed views on the current daily living component activities, which include the following.

• 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, 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.
• 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.
• I received calls for greater transparency about the point allocation.

Mobility component

I received strong testimonies in relation to the way case managers consider a person’s mobility needs as part of Adult Disability Payment. Furthermore, several respondents highlighted that the criteria would benefit from a clearer definition of what moving means and suggested using open ended questions that ask about movement, what people rely on to get around, and how people get around such as the use of public transport and with what aids.

During the Review, I frequently heard calls to include a range of additional impacts reflecting clients lived experiences before, during and after moving around. Participants made various suggestions:

• 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
• 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.

Daily living component

Activity 1 – Preparing food

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.

Many people with eating disorders reported that the food and nutrition related descriptors do not work for them. More general considerations included the fact that the criteria do not consider the ability of a person to access a diet likely to optimise health. I heard that it is unclear whether all the tasks involved in achieving an activity are considered in the application form or decision-making process and that tasks involved with this activity such as cleaning up and shopping for food should be considered.

Other related issues raised include:

• preparing a “simple meal” could mean beans on toast every day
• specific dietary needs, which due to digestive issues some people have, 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
• there can be significant physical costs after exerting energy needed to prepare and cook a simple meal
• forms do not mention slow cookers which can be safer, as well as air fryers and instant pots, which people felt are also more energy efficient
• people felt that the criteria do not account for memory or cognitive issues; 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 (although I appreciate the current reliability criteria should consider this)
• 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 it is so challenging 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 (again I acknowledge the current reliability criteria should consider this)
• aids/adjustments could include frozen chopped vegetables, ready meals, pre-prepared food.

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

I frequently heard 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 re-ordering Activity 1 and 2, because they felt the questions on the application form are repetitive. Others felt the activity overlooks 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.

Many people feel that the current rules are not sufficient as they do not consider the nutritional content of a person’s diet, only that the client is able to consume any food. 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 to better manage their health, rather than eating what others might say constitutes “a healthy meal”.

The key issues I heard regarding people with an eating disorder 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” (I appreciate that prompting currently forms parts of the eligibility criteria).

I heard 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

Some stakeholders have questioned why only therapy carried out in the home is considered in Activity 3, noting that therapy outside of the house 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 told me that some people find it too difficult to go to appointments for several 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. Some stakeholders felt the criteria should consider the cost of paying for therapies outside of the home since the purpose of Adult Disability Payment is to assist with the additional costs of having a disability and many people use private services because they are too difficult to access via the NHS.

Other issues I heard 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 face digital exclusion with certain types of therapy
• it can be costly to get to and from support groups
• the criteria do not account for the side-effects of some medication, including drowsiness, which can compound symptoms and functional limitations.

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

Many people told me that they are confused about the rationale for some of the “washing and bathing” criteria. The wording and eligibility for scoring points is very focused on functional ability and takes no account of other limitations, although the reliability criteria do consider the need for motivation. Some people mentioned the negative impact on personal hygiene is the same regardless of whether the cause is due to a physical impairment or a mental one.

Some stakeholders expressed the view that feeling sticky, dirty and being unable to wash without health consequences is not good for mental health. I received some views that 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. A consistent theme around some apparent anomalies included allocating three points for help getting in or out of an unadapted bath or shower, which is a relatively high number of points compared to others in the daily living section.

Many stakeholders would welcome the introduction of reference to intimate hygiene; it is interesting that the current eligibility criteria do not consider this. One person suggested that difficulties around intimate hygiene (for example inserting a tampon or using a sanitary towel) could potentially be worth more points due to being more psychologically difficult to manage.

Event participants also expressed the view that they needed more detail 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 how people complete those tasks and the impact it has on them is more important than whether the person can complete the activity itself or not.

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

I heard few comments 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

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.

Other comments I heard include:

• 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
• timelines often pose challenges, particularly when individuals are estimating the time required for tasks like preparing a meal or taking a shower
• the questions in the application form should allow for more detailed, descriptive responses which could better explain how applicants undertake activities such as dressing and undressing and all the steps this would involve
• being clear and explicit as to how the reliability criteria applies to this activity
• the energy cost involved in dressing means that many people with energy-limiting conditions cannot even get out of bed, let alone dress themselves – unless there is an unavoidable need for social interaction, they may well avoid dressing or undressing (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

I heard few comments in respect of this activity, but some included:

• there is no consideration of the environment in which a person is communicating and for some this is a key factor
• not being able to understand or reliably remember communication could have implications for managing medication
• at a few events I received anecdotal evidence about difficulties for clients in gaining points for “communication skills.”

Activity 8 – Reading and understanding signs, symbols and words

Most disabled people I engaged with had little or no comment to make with reference to this activity. However, one organisation raised that a person with a learning disability may score zero points for “reading and understanding questions”, as they can read, but this did not capture difficulties comprehending or acting on the information.

Activity 9 – Engaging socially with other people face to face

I had many discussions about the definition of “overwhelming psychological distress” with regards to this activity. 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. I received a suggestion that decision-makers should focus on psychological distress itself, rather than requiring an activity to result in overwhelming psychological distress for it to meet the criteria.

One stakeholder highlighted their view that the guidance in relation to Activity 9(c) for Adult Disability Payment is more restrictive than the equivalent case law for PIP.

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

I did not receive many comments in relation to this activity but a few things to consider include:

• if someone has a financial guardian, they clearly have difficulty managing money and therefore this could mean an automatic score of the highest number of points
• some disabled people highlighted 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 scored 0 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 different from being able to manage money.

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

The Scottish Government’s earlier public consultation on the eligibility criteria for the mobility component of Adult Disability Payment found that 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.

Respondents repeatedly raised other suggestions, including:

• clarifying what information Social Security Scotland is seeking in response to the questions posed about someone’s mobility needs
• 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
• ensuring case managers consider all aspects of mobility, 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

"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 persons. 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

I heard the following suggestions about the planning and following journeys activity in stakeholder meetings and consultation events:

• 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
• two individual respondents requesting that practitioners listen and believe the information provided to them
• consideration of environmental factors, public transport routes and difficulties during the journey
• a feeling 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
• it is not clear that 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.

I heard concerns about the language used in this activity’s criteria, including the term “overwhelming psychological distress”, which respondents found to be limiting, subjective and unclear. Many people believe there needs to be greater consideration of mental health in relation to this activity. I believe 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 does not suggest it is unreasonable for people to be anxious or have such fears.

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)² and 1(f)³. I also heard that many people find the meaning of language within this activity confusing which makes it harder for clients to describe their experiences and the job of decision makers more subjective. Some stakeholders informed me that they feel the definition of “orientation aids” needs to be expanded to include things like mobile phone map applications and support from another person.

Stakeholders raised issues regarding conditions related to fatigue and those at risk of infection if undertaking a journey, including:

• 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
• people at high clinical risk may need not just prompting and encouragement to travel but action to mitigate risks
• 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.
• 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 that is as risk-free as possible or not being able to contemplate any journey because it would cause psychological distress to the client
• 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 is in your own car, next safest by taxi (though this is far from risk-free – windows hardly open on some models and not accessible to the passenger)
• because 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 will 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.

One stakeholder raised specific concerns about how mobility criteria do not currently account for the impacts of bowel or bladder conditions that may cause incontinence. The need to plan for access to toilet facilities may represent an additional further difficulty for many disabled people.

I also heard positive comments about this activity which include the following.

• 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 travelling may help make clear to applicants there are legitimate and understandable reasons they would feel that way.
• Some people welcome the fact that stigmatising behavioural observations have been removed from the process and agree that these perpetuated unhelpful stereotypes.
• The commitment to ensure that where a consultation is necessary in relation to mental health or learning disability, the person conducting it will have relevant experience, and therefore be more capable of understanding the applicant’s condition. These changes have helped to create a process that is more dignified and less stigmatising.
• There was also general positive feedback about removing assessments and support for the decision to use professionally trained practitioners instead of assessors.

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

Many consultation respondents requested clarification of the language or meaning of the moving around criteria. Several respondents argued that the criteria would benefit from a clearer definition of what moving means and that there is a need for clearer images on the application form.

I believe that 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, whilst recognising that the level of impact can vary between individuals. Respondents frequently suggested changing the distance in this activity or not using any distance measures at all. 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.

In my engagements and through the consultation, participants discussed many issues and proposed changes, including:

• capturing explicitly the reliability criteria – one stakeholder highlighted that welfare advisors do not consider that the “how do you feel after” questions effectively convey and capture the reliability criteria, which advisors feel clients do not understand
• 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)
• many respondents to the DWP consultation on PIP felt 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
• revising the criteria, so it is more in line with the social model of disability
• that criteria should reflect experiences of moving in the built and natural environments
• that criteria should reflect 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
• that case managers should consider how people move around their house functionally
• that criteria should reflect the purpose of travel and subsequent difficulties faced at destination
• that criteria should reflect 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 case managers should consider the impact of certain medicines on movement.

I am keen to address the rigid nature of the mobility component. I have heard consistent criticisms that strict distances are arbitrary, not a useful measure, and do not adequately cover progressive or fluctuating conditions.

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. I also heard that the way the criteria are applied fails to consider the full complexities of a client’s situation.

I was concerned to hear that some disabled people feel they are effectively discouraged from being active due to the fear they would lose their entitlement to social security, especially given the health benefits that can come with exercise. I believe that 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.

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. 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.

Utilising elements of the way in which local authorities assess people for a Blue Badge could be beneficial. I also feel that 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. 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

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.