Social Security Experience Panels - Adult Disability Payment: mobility component eligibility criteria

Executive Summary

Introduction

Adult Disability Payment (ADP) is the twelfth payment now delivered by Social Security Scotland. It replaces the Department for Work and Pensions (DWP) delivered Personal Independence Payment (PIP) in Scotland, and it will provide support to over 600,000 disabled people by 2027. Over the next couple of years, people in Scotland who are in receipt of PIP or working-age Disability Living Allowance (DLA) will be transferred to Adult Disability Payment.

The Scottish Government is committed to an independent review of Adult Disability Payment. This report presents the findings from research conducted as part of the groundwork to prepare for the independent review.

The aim of the research was to understand the views of Experience Panel members regarding the current eligibility criteria for the mobility component of Adult Disability Payment, consisting of the Moving Around criteria, Planning and Following Journeys criteria, and Fluctuating Conditions criteria. This included which areas panel members would like to see changes made within, and to gather suggestions as to how changes could be implemented.

The research was conducted in two phases. The first phase took place during October and November 2022, and consisted of 15 interviews (in-person, by telephone and online), and three in-person focus groups. In total, 34 participants took part in this stage of research. A second phase of research took place from May to June 2023, and consisted of an online survey sent to 1,840 Experience Panels members. In total, 191 respondents took part in this stage.

Moving Around criteria

General views on the Moving Around criteria

Survey respondents were asked to provide some general feedback on the criteria. Almost half of respondents (49 per cent) disagreed that the descriptors were suitable for understanding someone's ability to move around, with a third (36 per cent) agreeing.

Almost half (47 per cent) of survey respondents agreed that the descriptors were clear and easy to understand, and a third (32 per cent) disagreed. Some interview and focus group participants provided positive feedback that the descriptors were clear and easy to understand.

Half of respondents (50 per cent) disagreed that they would find it easy to choose a descriptor or descriptors that reflected their own level of mobility, and two-fifths (39 per cent) agreed.

Use of distances

Many participants and respondents criticised the use of distances within the criteria. Some suggested that continuing to use elements of DWP processes, such as the distances in the descriptors, was inappropriate. Others felt that the distances needed to be revised as they were currently too short, while some suggested removing them altogether. Many stated that they found distances presented in metres quite abstract and difficult to understand in relation to their own mobility.

Accounting for additional factors

Many participants and survey respondents highlighted additional factors that they felt should to be considered when looking at a person's ability to move around. These included: pain, consequences of movement, surfaces, time, balance and the effects of medication. The majority of these factors are already included within Social Security Scotland guidance.

A holistic approach to mobility

Some participants commented that asking about the distance a person can move is not a complete picture of mobility. A few participants linked together some of the factors outlined above to describe how intersecting and mutually affecting aspects of their conditions influenced their mobility, for example, where anxiety over moving worsens the consequences of moving.

Others suggested that a better way to understand how these factors impact on an individual's mobility would be to ask about their ability to manage everyday situations or carry out day-to-day tasks. The majority of survey respondents (70 per cent) agreed with a suggestion that the moving around criteria should include categories for everyday tasks and elements beyond distance walked.

Some participants wanted to have additional space within application forms to describe how their condition or conditions affect their mobility. The majority of survey respondents (75 per cent) agreed with a suggestion to have a space available to describe what happens after someone has been walking for a period of time.

Using aids

Some participants and survey respondents highlighted that they were unsure how the use of a mobility aid related to the criteria. They described uncertainty around how they should self-assess based on their use of aids, particularly where this results in very different levels of mobility when compared to moving without an aid. Several participants expressed a preference for mobility to be considered only on the basis of unaided movement, or that movement with an aid is conditional on having access to the required support.

Other suggestions

Some participants and respondents suggested that there should be a greater involvement from health professionals. Suggestions included granting health professionals the authority to trigger a review of a person's mobility needs, and including in the decision-making process any recommendations or observations made by them.

Participants expressed mixed opinions on face-to-face meetings. A few stated that they would prefer to have the opportunity to discuss their mobility needs with someone face-to-face, as they found it easier and felt there was better understanding in this situation. However, others stated that they found face-to-face interactions intimidating, and described past experiences of these with DWP as demeaning and stressful.

Preferred areas of change

As part of the follow-up survey, respondents were asked to consider three areas for change within the mobility criteria. These were broad suggestions rather than specific changes, which respondents were asked to rank by preference from most to least important.

The most popular suggested area for change was taking a more holistic look at a person's mobility needs, which almost two-thirds (64 per cent) of survey respondents chose as their first preference. The least preferred option was reconsidering the distances used, which was ranked as least important by almost half (47 per cent) of respondents.

Additional mobility costs

Participants were asked about any additional costs that they incurred as a result of limited mobility. Participants described increased transport costs, particularly in rural areas or places with limited accessible means of transport. Others highlighted expenses for help around the home, and household costs associated with immobility, such as bedding, bedclothes and energy costs from additional laundry where someone is bedbound.

Planning and Following Journeys criteria

General views on the Planning and Following Journeys criteria

Almost half of respondents (46 per cent) agreed that the Planning and Following Journeys descriptors were suitable for understanding someone's ability to move around. However, almost two-fifths (38 per cent) disagreed.

More than half of respondents (54 per cent) agreed that the descriptors were clear and easy to understand. Almost a third (29 per cent) disagreed.

Almost two-fifths (39 per cent) of respondents agreed that it would be easy for them to select a descriptor to describe their own ability to plan and follow a journey. However, close to half (46 per cent) disagreed.

Confusion around criteria

Participants and survey respondents expressed confusion around different areas of the Planning and Following Journeys criteria. Some stated that they were initially unsure of what was being considered in this section, particularly whether the descriptors were relating to only physical, or physical and psychological aspects.

The uncertainty over which areas were being examined through these criteria was reflected in confusion over how to select descriptors. A few suggested renaming the section to improve understanding of what was being considered.

Separating different elements

A number of suggestions made by participants and respondents related to separating out different elements from the Planning and Following Journeys criteria, which they viewed as distinct issues requiring different approaches.

Some participants suggested that the planning stage should be separated from actually undertaking a journey as they relate to different abilities. Survey respondents were asked if they agreed or disagreed with the suggestion to separate planning and following journeys. There was strong support for this, with the vast majority (83 per cent) agreeing.

Some participants and respondents suggested that mental health, cognitive and physical conditions that affect mobility should all be addressed as separate elements.

A few respondents and participants suggested that separate criteria could be used for different types of journey, for example, familiar and unfamiliar. More than three-quarters (77 per cent) of survey respondents agreed with this suggestion.

Mental health and cognitive conditions

A few participants noted that their mental health was unpredictable, and sudden flare-ups could leave them unable to travel. They felt that the current criteria do not offer enough flexibility to account for this. Others commented that they felt the criteria had only limited use for understanding the circumstances of individuals with conditions such as sight loss, cognitive conditions, and those who are neurodiverse.

Journeys

Some participants and respondents stated that there were differences in types of journey that would be important to account for, particularly if the mode of transport resulted in additional difficulties for the person making the journey.

Some survey respondents highlighted that the criteria do not cover a person's ability to navigate any obstacles that are encountered on familiar or unfamiliar journeys, and how these may influence the person through additional stress and anxiety.

Respondents and participants also highlighted that people may experience varying abilities during the journey itself, and that these can be due to diminishing ability over time or unexpected issues which are difficult to account for when selecting criteria. Examples included mental tiredness ('brain fog'), physical fatigue, unpredictable conditions, needing assistance from another person, stress and anxiety.

Distress

A few participants and respondents noted that while they were able to plan and follow the route of a journey, this could sometimes cause significant distress through stress and anxiety in the lead up to actually undertaking travel, without fully preventing it. Some participants and respondents stated that they felt situations where someone experienced overwhelming psychological distress should score more points.

A few participants and respondents wanted to see a clear definition of what constitutes overwhelming psychological distress. More than three quarters (76 per cent) of survey respondents agreed with the suggestion to include a definition of 'overwhelming psychological distress.'

Use of orientation aids

Some participants and respondents' comments reflected uncertainty around what counts as an orientation aid. These commonly referenced mobile phones and digital map applications that are widely used by people when planning and taking journeys, regardless of whether or not they have a health condition.

One participant suggested that aids be removed from the decision-making process, so that only a person's unaided ability is considered. Survey respondents were asked if they agreed or disagreed with this suggestion, with almost three-quarters (71 per cent) agreeing.

Fluctuating Conditions criteria

General views on the Fluctuating Conditions criteria

Almost half of respondents (45 per cent) agreed that the Fluctuating Conditions descriptors were suitable for understanding how someone's condition can fluctuate. However, more than a third (35 per cent) disagreed.

Responses were mixed regarding how clear and easy to understand the descriptors were, with slightly more respondents disagreeing (41 per cent) than agreeing (39 per cent).

When asked if they found it easy to select a descriptor that reflects their own fluctuating condition (if they have one) more respondents disagreed (51 per cent) than agreed (31 per cent).

Positive feedback

A number of participants provided positive feedback on the fluctuating conditions criteria. Comments included that the 50 per cent format was an improvement, and that changes placing an increased focus on time, safety and fatigue were welcome.

Confusion over criteria

However, a number of participants and survey respondents commented that they found the criteria to be too complicated and confusing. In some instances, this confusion led to a misunderstanding of the circumstances that the descriptors were outlining.

Difficulty using set criteria and measurements

Many participants and respondents commented that they found it difficult to think of how their conditions affect them in terms of percentages or averages, particularly where this was a long-term condition. Survey respondents were asked to comment on a suggestion to provide an example for fluctuating conditions that illustrated what the percentages might look like in terms of number of days, with slightly more than half (59 per cent) agreeing.

Other participants stated that they needed a more flexible and holistic way to describe how their condition affected them. Survey respondents were asked to comment on a suggestion to have greater flexibility through looking at an individual's circumstances holistically, with the vast majority (86 per cent) agreeing.

Unpredictable conditions

Many participants and respondents described the unpredictability of fluctuations as a major challenge to measuring their conditions against the criteria. Some commented that the criteria are unsuitable for when a condition is also seldom triggered, despite being serious, and described issues with categorising such a condition as 'fluctuating'.

Some participants and respondents referred to how their condition can be triggered by a wide range of different factors, making it hard to estimate fluctuations within the percentage criteria. Others highlighted that they could limit how often their condition was triggered by adapting their lifestyle, restricting what they do and lowering their quality of life. These participants suggested that the decision-making process needs to be more aware of how meeting a certain criteria can be related to these life-limiting adaptations.

Automatic qualification

Some participants and respondents felt that there should be automatic qualification for certain conditions or where many different conditions have a cumulative impact. Almost all (93 per cent) survey respondents agreed with this.

Criteria open to abuse or irrelevant

Finally, some participants and respondents commented that they felt the fluctuating conditions section was irrelevant or open to abuse, suggesting that people would self-assess based only on their worst days.

Cross-cutting comments

There were a number of points raised by participants and respondents that applied across all criteria or more generally to the decision-making process.

Many participants and respondents suggested that the decision-making process needs to be tailored to the particular conditions that an individual has.

Some participants and respondents suggested that mental health needs to be considered separately from any mobility issues. Survey respondents were asked if they agreed or disagreed with the suggestion to have a separate section covering mental health. The majority (58 per cent) agreed, however almost a fifth (18 per cent) disagreed.

Some participants and respondents said mental health conditions should be formally recorded within the decision-making process. Others highlighted that the application process is too difficult for unsupported individuals with mental health conditions.

Some participants and respondents suggested that the decision-making process should make better use of a person's medical history or the input of health professionals to determine how they are affected by a condition. A few participants noted that it is important to be aware of when someone is self-managing symptoms and rarely or never visits medical professionals, as this will reduce the supporting information that is available to them for applications.

Finally, some participants suggested ways of making the application process more accessible. These included having examples which would help applicants understand what the criteria were asking about or providing applicants with alternative means of communicating about their condition, such as storyboards.