Adult Disability Payment - mobility component: consultation analysis
An independent analysis of the responses to the consultation on the eligibility criteria for the mobility component of Adult Disability Payment (ADP).
5. Support for people with fluctuating conditions
As many conditions fluctuate on a daily or weekly basis, the Scottish Government recognises that offering support for people with fluctuating conditions is relevant to the moving around and planning and following journeys activities. However, as noted in Chapter 2, respondents frequently expressed a view that the criteria for the two activities are not applicable to, or representative of, those with fluctuating conditions, specifically a person's ability to always walk more than 20 metres or consistently execute a journey.
This chapter presents an analysis of responses to questions which asked respondents to: consider the clarity of the fluctuating conditions criteria, including descriptors of previous activities being satisfied 50% of the time; comment on feedback received about fluctuating conditions through previous research; and suggest changes to the criteria.
The eligibility criteria
A Social Security Scotland case manager decides for each activity which of the descriptors apply to the person and, therefore, how many points they receive. A case manager should consider that a person's ability to carry out mobility activities may change daily and, as a result, a person may satisfy several different descriptors for an activity at different times. More detail on the descriptors is shown in a table in the consultation paper.
| Base |
n= |
% Agree |
% Disagree |
% Don't know |
|---|---|---|---|---|
| All answering |
94 |
33 |
50 |
17 |
| - Individuals |
65 |
35 |
42 |
23 |
| - Organisations |
29 |
28 |
69 |
3 |
11(a). Please give reasons for your answer, outlining which parts you think are easy or difficult to understand and why.
11(b). How could we make the fluctuating conditions criteria easier to understand?
Although Q11a and Q11b were analysed separately, respondents' answers to Q11b often addressed the issues they outlined at Q11a. Given this overlap, we have presented the analysis of the two questions together in the section below.
Clarity of criteria
Two thirds of respondents answered Q11a, and many commented on their difficulty understanding the criteria which they felt are unclear and overly complex. Respondents highlighted the formal, overly complicated language, including using fixed or confusing statements and the lack of examples or sufficiently detailed guidance. Some said clients would find it challenging to describe their fluctuating condition effectively using these criteria. Glasgow Disability Alliance reported members felt the following text was "wordy, over-complicated and difficult to apply to their personal experience":
"If they meet some criteria on different days that add up to more than half their days, they get the number of points they score on the most days. Or, if they meet different criteria for the same number of days, they get the criteria that scores the highest number of points".
Some commented on the use of descriptors, noting either the term itself was disliked, or the inclusion of descriptors caused confusion. For instance, the language of the third descriptor – "If no descriptor is satisfied on over 50% of days, but two or more descriptors when added together amount to more than 50% of days" - was considered harder to understand, with calls for definitions of the words 'descriptor' and 'satisfied'.
"If there is more than one 'descriptor', then why would it matter if the one with the highest score was considered? Surely both should be considered in their own right and given equal importance. What if there are more than two descriptors?" - Individual
Conversely, some individuals and organisations felt the criteria were clear, easy to understand, and comprehensive. A few noted that while clients may struggle to understand the criteria and accurately describe their situation, specialist workers would not have difficulty due to their regular engagement with the criteria. CPAG in Scotland recommended clients have access to a trained welfare rights specialist and independent advocacy, where appropriate, to provide advice on entitlement.
"These criteria are now much clearer, and suffering myself from fluctuating conditions, I believe that they make it much easier for judging a person's state of health and realising that not every day is the same." - Individual
Calls to simplify or clarify the criteria was the most common theme among the half of respondents who answered Q11b. Several suggested specific changes to the application form, such as providing more examples, tables, embedded videos or illustrations and simplifying the wording. Respondents felt more explanation would be helpful, particularly around definitions of descriptors, fluctuations and points, and clarity around the conditional 'if X then Y' rules. Suggested text improvements included simplifying the syntax, avoiding jargon and using clear language, and clear labelling in tables.
"The criteria around fluctuating conditions need to be more explanatory and illustrative to reflect the variation of symptoms of different conditions and the various experiences of those with one or more fluctuating conditions." - Alzheimer Scotland
Use of the 50% of the time criterion
The second most prevalent theme was comments from several respondents about the 50% of the time criterion – often referred to as the 50% rule. Respondents felt the criterion was not a useful measure. A range of difficulties were noted, including:
- Clients unable to accurately record their fluctuating symptoms, e.g., due to extremely regular fluctuations making it difficult to quantify into overall percentages or ill-health preventing recording.
- Lack of clarity for clients about what information to provide, for instance, when fluctuating conditions can impact them in various ways at different times.
- External factors such as seasonal variability (light, weather) impact fluctuations in conditions.
A few organisations reiterated their preference not to use the 50% rule; for instance, SAMH highlighted the complexity involved in its use:
"SAMH has longstanding concerns about the adoption of the 50% rule… Mental health conditions can fluctuate, both in the short and long term. As such, accurately quantifying the impact of a mental health condition on someone's functional ability… over time against a strict 50% mathematical criteria is incredibly challenging. Indeed case law (Case No UK/972/2015) has found that in the case of comorbid conditions, mathematical probability theory may be needed to calculate whether someone satisfies the 50% rule." - SAMH
A few individuals queried why the 50% rule was being applied, and Crohn's & Colitis UK felt '50% of days' was unclear and requested clarification as to whether it meant 50% of days in a week, month or year. Only one respondent, an individual, expressed support for retaining this criterion.
For the reasons outlined above, the second most prevalent theme at Q11b was several calls for the removal of the 50% rule.
"The simplest way to make these criteria easier to understand would be to stop using arbitrary measures such as 50% of the time and to look at the frequency, severity and impact of symptoms as an alternative." - MS Society Scotland
Some suggested tools to improve supporting information collection or gave views on decision-making. Two suggested using diaries to collect supporting information, though members of the EEPPIC considered and then discounted this option because recorded diary information would quickly become outdated. They preferred a face-to-face consultation with an empathic person with active listening skills. A few respondents felt the client's worst day should be the key determinant for an award.
Other aspects of the criteria to consider
The third prevalent theme, raised by some respondents, covered other aspects the criteria should address. Points raised included that: the current criteria are too narrow to capture the nuanced range of impacts on mobility; clients could be disadvantaged if unable to decide which descriptor best fitted their situation due to fluctuations in their condition; and the challenge of experiencing and describing fluctuating conditions, such as when multiple conditions exists or due to the unpredictable nature of their condition.
People First Scotland also highlighted that whilst a learning disability does not change over time, people who have learning disabilities are still affected by fluctuations in their lives, such as mental health, support available, weather, accessibility, and transport.
"It is also challenging to consider the descriptors where a claimant has more than one fluctuating condition that affects their ability to manage an activity. If you have more than one fluctuating condition and these affect your ability to manage a particular activity independently of each other, you may be affected on more than half of the days during the period considered, even if each condition only affects you on a minority of days. This complexity needs to be addressed." Alzheimer Scotland
A few commented on how case managers applied the criteria should be considered:
"There are issues where a claimant may have multiple/overlapping fluctuating conditions, and an assessor has to make a judgement about which descriptor is best satisfied. This is open to interpretation and variability depending on an assessor's knowledge and understanding of a particular condition/symptom, and there may be a greater likelihood of awarding a lower-scoring descriptor if there is more evidence to satisfy this… For example, this may be the case for claimants who experience dementia alongside other conditions such as Parkinson's." - Individual
Less commonly mentioned themes
A wide range of other comments were made at Q11a and Q11b by small numbers of respondents. For completeness, these are listed in Appendix E.
Evidence
| Base |
n= |
% Yes |
% No |
% Don't know |
|---|---|---|---|---|
| All answering |
87 |
46 |
29 |
25 |
| - Individuals |
61 |
38 |
33 |
30 |
| - Organisations |
26 |
65 |
19 |
15 |
12(a). If you said "yes", what other issues with the fluctuating conditions criteria do you think need to be considered?
Around half of respondents answered Q12a, citing a range of other considerations.
Use of 'good day, bad day' criteria
Several respondents commented on using the 'good day, bad day' criteria. Over half either felt it was impossible for clients to average their symptoms or that the worst day should be used for decision-making.
"It would be more effective for applicants to be asked to consider how they are on a bad day or worst day instead of trying to work out whether their condition negatively impacts them 50% of the time to understand the support they need." - Neurological Alliance of Scotland
However, a few respondents commented positively on the proposals. Crohn's & Colitis UK welcomed the point around "not relying on the 50% marker", whilst one individual felt account should be taken of both good and bad days and then determine an award based on the severity of disabilities. MACS also advocated this approach:
"Allowing clients to describe their best and worse days and the frequency of these is probably the best approach. A client needs to feel that they have every opportunity to describe their disability/health." - Mobility and Access Committee for Scotland (MACS)
Unpredictability
Another prevalent theme, mentioned by some, was that the unpredictable nature of fluctuating conditions needs to be further considered. These comments highlighted that fluctuating symptoms could occur suddenly or vary in a day or that no two days are the same. Inclusion Scotland highlighted that the current descriptors are based on past experiences and argued past symptoms are not a useful predictor of future incidence. A few noted unpredictability can worsen if multiple conditions exist. One Parent Families Scotland and CAS highlighted difficulties forecasting the effectiveness of medication and treatment on a person's condition should also be considered.
Providing supporting information
Some mentioned difficulties in adequately recording, describing and assessing fluctuating conditions. It was felt clients themselves would experience difficulties in relaying their symptoms accurately. A few noted that clients would struggle to compare their symptoms to the eligibility criteria, whilst others highlighted psychological factors that could impact the client's ability to provide supporting information. Psychological issues could include clients downplaying the impact of their disabilities due to limited mobility becoming normalised in the person's daily life or wishing to avoid memories of negative experiences. Others highlighted that certain groups, such as people with autism spectrum disorder, could experience difficulties accurately describing their symptoms or feelings due to the nature of the condition.
"…with a fluctuating condition, it is difficult to admit to yourself or others just how much you are affected on bad days. You tend to try to say you're better than you really are because you're holding on to the fact you still have some better days." - Individual
Less commonly mentioned themes
Some respondents highlighted certain groups they felt needed to be better considered - people who have fibromyalgia, Crohn's disease, arthritis, POTS (Postural Tachycardia Syndrome), auto-immune illnesses and people with multiple conditions were mentioned. A few suggested consideration should be given to including all conditions, with two noting those without a formal diagnosis can still experience severe impacts.
Appendix E details other points raised in Q12, including requests for changes to the application form, and the role of professionals in providing supporting information.
MS Society Scotland's Survey Tool Responses
89 respondents answered the survey tool's equivalent question to Q12a: "What are the issues with the way the ADP/PIP application process currently takes account of fluctuating conditions?"
The focus of many comments was highlighting the fluctuating nature of MS symptoms, alongside the view that these variations, as well as other fluctuating conditions, are not adequately reflected in the eligibility criteria for the mobility component. Respondents gave examples of challenges in using mobility aids, fatigue, relapses, experiences of living with multiple conditions and attending social events.
Other prevalent themes emerging from responses received via the tool aligned with those outlined above, specifically:
A critique of the '50% of the time' criterion which was felt to be inadequate or too simplistic to accurately capture fluctuations.
The need to consider the unpredictable nature of fluctuating conditions:
"It is narrow-minded and doesn't reflect the true reality of such conditions. It is contradictory as variable means constantly variable; it doesn't follow a timetable, so it makes it inaccurate and extremely unfair." - Individual
The use of good and bad days as a measurement which was described as a flawed and unfair way to measure the impact on someone's life. Concerns were expressed about what would happen if a good day was described or a client was having a good day during their consultation, sometimes based on past experiences:
"In my experience, as soon as I said I have a few good days, they took it as my MS can't be that bad." - Individual
12(b). In your view, what are the positive aspects of the fluctuating conditions criteria that we have not captured above?
Just over one quarter of respondents answered Q12b. The most prevalent theme, mentioned by some, was the merit of adopting a more flexible approach to understanding client needs. Some of these comments agreed the proposed approach was more flexible, whilst some others felt it was important to build a complete picture of the person, and this would be challenging if the 50% of the time rule were used. Respondents made calls for a more open-ended approach to allow clients to express themselves in their own way.
Other than the prevalent theme, responses covered a range of issues including both support for the changes and a view that there are no positive impacts. These are summarised in Appendix E.
Improvements
To address concerns, the Scottish Government has provided a legal definition of what it means to carry out an activity to an acceptable standard, and amended the definition of what it means to complete an activity safely. Further improvements to the application form include clear guidance on how the eligibility criteria is applied. This helps to support people in providing relevant information about how they feel after completing an activity.
Bespoke consultation durations have been introduced to allow fluctuating conditions to be properly considered. A consultation only covers the areas of the application which are relevant to the person and on which the case manager has requested further information to make a decision. Practitioners take the time necessary to fully understand the impacts of a disability and/or health condition on a person. Guidance is available for case managers to ensure that environmental, cultural and social factors are considered.
| Base |
n= |
% Very effective |
% Effective |
% Somewhat |
% Not very effective |
% Not effective at all |
|---|---|---|---|---|---|---|
| All answering |
84 |
13 |
30 |
26 |
21 |
10 |
| - Individuals |
59 |
15 |
37 |
32 |
14 |
2 |
| - Organisations |
25 |
8 |
12 |
12 |
40 |
28 |
Just under two thirds provided a reason for their answer to Q13, and the most common themes in comments were improvements to, and positive aspects of, the application form.
Suggested improvements
Suggested improvements were made by several respondents. These included requests to amend or clarify the form, comments that the form does not capture fluctuating conditions well, and requests to consider multiple conditions. A key concern was for the form to allow sufficient space to adequately describe conditions, particularly for those with multiple conditions. A few, therefore, called for even more open text boxes.
"It is our understanding that there is not a fluctuating conditions 'section' of the application form; instead, someone is asked how often they need help for each activity. This may not be sufficient to gather the information needed for case managers to understand the needs of people with fluctuating conditions." - The Action Group & VOCAL & Grapevine at Lothian Centre for Inclusive Living
Linked to the calls for greater clarity of the criteria, some suggested that more examples of how a condition can fluctuate would be useful. Alzheimer Scotland argued that examples could be broadened to include other groups, such as those with cognitive impairment or mental health conditions, to help clients understand how these are relevant.
Further singular suggestions raised by organisations are listed in Appendix E.
Positively rated features of the section
Several respondents gave positive feedback about the fluctuating conditions section. In these comments, respondents welcomed the broader range of conditions, found the contextual information helpful or felt it improved the previous form. Singular comments from individuals included that the examples covered the main situations clients were likely to experience, that it gave space for explanations, the form conveyed a sense the client was being listened to, and that the use of the pink bubbles was helpful.
"That is exactly the kind of information which can help someone to contextualise the overall effect of moving around." - Individual
Factors that may impact client information
Some felt clients could not adequately describe their situation using the form or might downplay aspects, and that the complicated nature of demonstrating the impact of fluctuating conditions would adversely affect take-up. Respondents cited people with learning difficulties, cerebral palsy, attention difficulties or pain as likely to experience problems, and one organisation highlighted how seasonal changes might impact client statements.
| Base |
n= |
% Significant Positive |
% Positive |
% Neither |
% Negative |
% Significant Negative |
|---|---|---|---|---|---|---|
| All answering |
80 |
18 |
50 |
29 |
3 |
1 |
| - Individuals |
57 |
18 |
56 |
21 |
4 |
2 |
| - Organisations |
23 |
17 |
35 |
48 |
0 |
0 |
Around half of respondents answered Q14. Comments were largely optimistic; the few negative comments centred on a perception that insufficient data was available to make a judgement or a small number who challenged the criteria.
Staff training and knowledge
Several respondents emphasised that case managers and practitioners must thoroughly understand disabilities. However, negative reflections on previous experiences with the DWP's PIP assessments were made by a few individuals. EEPPIC welcomed case managers being advised to consider cultural, social and environmental factors and listen carefully, but felt more work was needed to improve the criteria or address legacy issues around trust. Crohn's & Colitis UK also welcomed the changes, but felt these were more likely to result in a better client experience rather than directly improving staff's knowledge and skills.
Improved client wellbeing
The second most mentioned theme, raised by several, was that any improvements which reduce stress and anxiety in clients are welcome. Respondents noted consultations could be stressful for clients, and their emotions could easily be heightened, either by the process itself or by revisiting distressing symptoms. Putting people at ease, not rushing them, listening closely and believing clients were all considered helpful qualities of a practitioner during consultations.
More individualised approach
Several respondents supported the move towards a more individualised and holistic, all-encompassing approach to identify and understand people's circumstances. Comments included a practitioner discussion being helpful as clients could use their own words in their own time, that clients would better understand the process, and that focusing on impacts was helpful. A few cited the move away from face-to-face assessments as a positive development. The Scottish Association of Social Work also highlighted social workers are skilled at understanding the impact of conditions and that including social worker supporting information could reduce pressure on other professionals.
Flexibility within the consultation was considered helpful by some, such as only focusing on specific areas to avoid repetitive or unnecessary questions and prevent clients from retelling their story. However, Versus Arthritis warned against clients with curtailed consultations receiving limited or restricted awards. One organisation highlighted the similarities with tribunals, arguing for greater client support if such an approach were used:
"Generally, tribunals then limit themselves to questions on these activities saving the claimant having to answer questions which are not relevant. For this type of system to work, however, the claimant would need to have had good support to complete their application/understand the rules." - ENABLE Scotland
Improved decision-making
Some commented on decision-making about fluctuating conditions, arguing that supporting information gathered through a more holistic decision-making process would lead to better decisions by case managers. However, it was noted:
"The litmus test would be the number of claims being made right the first time, which would result in an increase to the number of paper-based decisions and a reduction in challenges to a decision." – Blesma
15. If there was an opportunity to change any specific aspects of the fluctuating conditions criteria, what changes would you make (if any)?
15(a). If you proposed changes, what positive impacts could these have, and for who?
15(b). If you proposed changes, what negative impacts could these have, and for who?
Just over half of respondents commented on Q15. The main themes that emerged were comments on the measurement of good and bad days and for the 50% rule to be replaced with a more flexible, person-centred approach.
Good days, bad days criteria
Several respondents commented on the measurement of good and bad days. Most frequently, respondents felt that decisions should be based on a person's worst day rather than good days. Doing so would simplify the process and make it easier for people to describe compared to trying to measure and record their fluctuating conditions.
Two respondents noted clients might downplay the truth if asked about good days. A small number in this theme preferred a more holistic approach rather than this measure. The Scottish Association of Social Work suggested an enhanced person-centred approach could be achieved by creating an accurate measure of how people are impacted on their worst day and comparing it to their better days. They suggested social workers could become more involved in the application and decision-making processes given their expertise in people's social and interpersonal needs.
"This would not only build foundations to a more understanding and person-centred system but allows for a social model within the assessment as opposed to the current medical model." - Scottish Association of Social Work
More person-centred
Several respondents commented on the need for a person-centred approach that, in the words of Glasgow Disability Alliance, "trusts disabled people as the experts in their own lives". Most felt the existing measures should be replaced with an approach based on the impact limited mobility could have on a person's life, rather than the movement or journey in itself. For instance, one individual highlighted that if someone were bedridden for three days a week, they would not qualify, despite having a considerable impact on their lives. They argued allowing discretion in such cases would create a more person-centred approach.
"As an example, if a person is impacted less than 50% of the time, but a Motability car would allow them to get out, maintain a job etc. Perhaps this can be considered as some form of exception processing where the benefits to a person and society are justifiable." – Individual
Other themes
Respondents' comments ranged widely in answer to this question. Some requested greater use of open questions, some for more listening to clients and those who know them well, and some requested a greater understanding of conditions among staff. A small number felt the impact of the process, the interplay between mental health and conditions or the impact of having multiple conditions should be further considered.
Positive impacts
Around a third of respondents answered Q15a. Several highlighted how their suggested changes would positively impact those with fluctuating conditions. They described improved client outcomes from introducing a more person-centred approach, including a more stable income, a more supportive and understanding approach, and more people receiving awards or higher rate awards. A few suggested that income stability would benefit a client's quality of life in other ways, such as being more independent and able to participate in society and improving wellbeing. Some respondents took a wider view and felt all clients would benefit from a more holistic approach, as this would help build a more understanding culture, build trust in the system and reduce client stress. A few noted more people might receive awards, or more higher rate awards could be made.
"To tackle legacy issues, it is important to build trust with disabled people, including evidencing a positive change in Adult Disability Payment." - EEPPIC
A few respondents also felt the changes should improve decision-making which could result in more people receiving awards, with greater accuracy in awards made the first time, and a reduced number of appeals. One respondent noted that the ability to make discretionary awards would increase flexibility by extending options for decision-makers.
"The move to a more detailed, holistic assessment approach will have a range of positive impacts. Initially, these impacts will improve the decision-making process, which will help people develop trust in Social Security Scotland and support the stated aims for treating people with dignity, fairness and respect." - MS Society Scotland
Negative impacts
Around a quarter of respondents answered question Q15b. Half stated that no negative impacts would arise from their suggested changes. Some noted that their changes might lead to increased financial expenditure or workloads for staff. For instance, a person-centred process might be more time-consuming to complete. However, MS Society Scotland felt this would be offset by improved decision-making. Some highlighted negative impacts could occur if case managers were insufficiently trained or adopted poor practices.
MS Society Scotland's Survey Tool Responses
The MS Society Scotland tool asked the question: 'How could the ADP/PIP application process take into account your fluctuating symptoms?'. Around three quarters of those using the tool responded.
Respondents were more likely than those responding via Citizen Space to identify the need to involve other professionals. Several felt GPs should be more involved in providing information about a client's condition, but other suggestions included MS nurses and specialists, physiotherapists and occupational therapists.
Another prevalent theme was the need for better recognition of the lifelong nature of certain fluctuating conditions such as MS. Some raising this issue therefore argued that fluctuations should not be used as a measure or to have greater recognition of, or research into, fluctuating conditions.
Contact
Email: ADPreview@gov.scot
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