Independent Review of Adult Disability Payment (ADP): Analysis of responses to a public consultation and call for evidence

6. Fluctuating Conditions

This chapter examines respondents’ views about the fluctuating conditions section of the Adult Disability Payment application form and how these are considered. Social Security Scotland defines fluctuating conditions as disabilities or conditions that can change frequently. These may include conditions like asthma, epilepsy, Chronic Obstructive Pulmonary Disease (COPD), bipolar disorder, or post-traumatic stress disorder (PTSD). The application form provides guidance for clients to understand how the rules for Adult Disability Payment are applied for people with fluctuating conditions. While the fluctuating conditions can also affect mobility, this is covered in a previous separate consultation about the mobility component of Adult Disability Payment.

Key findings

• Seven in ten (70%) consultation respondents felt the daily living activities do not allow the impact of fluctuating conditions to be accounted for adequately. Both respondents and event participants suggested that people with fluctuating conditions may struggle to describe the impact of their fluctuating conditions, with the Adult Disability Payment application form viewed as being too rigid and inflexible, with little opportunity to describe nuance or the impact of multiple conditions.
• Mixed views were expressed about the fluctuating conditions section of the Adult Disability Payment application form. Some consultation respondents found it confusing or felt it did not consider the impact of bad days on life and wellbeing. In contrast, some others commented that the section allowed them to adequately represent their conditions.
• Respondents suggested changing the 50% rule, with suggested alternatives including a 30% rule or a sliding scale depending on the impact of fluctuating conditions on daily life. Considering the wider impacts of how completing a task can affect a person’s life was also recommended as a change.
• While respondents typically felt that any changes made to the fluctuating conditions sections would improve clients' outcomes, a small number raised concerns including that a longer application that could be more difficult to complete and increased costs for the Scottish Government.

Q8A. Do the current daily living activities adequately allow the impact of fluctuating conditions to be accounted for?

Q8B. Please give reasons for your answer.

Seven in ten (70%) consultation respondents who answered felt the current daily living activities do not adequately allow the impact of fluctuating conditions to be accounted for. One in ten (11%) felt they did, and one fifth (19%) were unsure.

The activities do not account for fluctuating conditions

Almost seven in ten consultation respondents left an open comment giving reasons for their answer. Several individuals felt that the daily living activities did not adequately account for the impact of fluctuating conditions, with this view endorsed across multiple events. Commonly the challenges of describing or measuring fluctuating conditions was highlighted, and were highlighted across multiple engagement events. Two respondents commented on the 50% rule, with one perceiving it was not inclusive, and the other, that it was unfair. Discussion in the engagement events suggested this was because a person may not reach the 50% threshold, but still have significant needs some of the time. An example was given of people with a visual impairment experiencing fluctuations linked to the season or time of day, which is not taken account of under the criteria. There were calls for a better way of capturing the needs of this group, although the risk of making the criteria more complex was acknowledged at one event.

“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

A few felt it was difficult for people to describe fluctuating conditions, or their impact, using the current approach, potentially leading to receiving less support than they are entitled to.

“As outlined in our response to other questions, we believe individuals with fluctuating conditions may struggle to describe how they are impacted in the way the form suggests. This may lead to some people receiving less support than they should be entitled to, and it may dissuade others from completing their application in the first place.” - Health and Social Care Alliance Scotland

The activities do not capture uniqueness

The daily living activities were considered insufficient for capturing the individual nature of people’s conditions and circumstances, according to several individuals. The Adult Disability Payment application form was viewed as being too rigid and inflexible, with little opportunity to describe nuance or the impact of multiple conditions. This view was also raised at multiple events, with calls for ‘sometimes’ to be added as a category in addition to ‘yes’ and ‘no’, and for more opportunities to leave open comments around how activities are undertaken, such as tasks requiring assistance and how long they take. One highlighted that conditions impact people differently and felt this should be recognised:

“Too often people are asked as if their illness/disability follows a rule. Everyone, no matter who they are, has had an illness, from something as simple as a cold or flu. They do not follow a rule, nor are they exactly the same as others. Person A may have a cold that’s lasts 2 days, but Person B may have a cold that’s lasts 4 days. People are unique and are individuals and they should be treated as such.” - Individual

Comments on best and worst days

Several commented describing their best or worse days. The most common view was that people would describe their worst days to gain points. Two individuals called for ‘worst days’ to be asked about directly on the application form. Others commented on having some good and bad days and felt that this should be acknowledged in decision-making.

Q10A. How effective do you think the fluctuating conditions sections of the application form are at helping people to describe their daily living needs?

Q10B. Please give reasons for your answer.

Among those who answered, three fifths (60%) felt that the fluctuating conditions section of the application form is ineffective at helping people to describe their daily living needs; 35% felt it is ‘not very effective’ and one quarter (25%) that it is ‘not effective at all’. While the remainder felt it is effective to some extent, most of this group felt it was ‘somewhat effective’ (22%) or ‘effective’ (14%), rather than ‘very effective’ (1%).

Confusing

Just under two thirds of consultation respondents commented at Q10B. The most prevalent theme was confusion over the fluctuating conditions section of the application form. Respondents were unsure what the prompts were asking, unsure what they were meant to convey in this section, and one respondent noted they did not know there was a section of the application that considered fluctuating conditions. Two respondents asked for clearer details and one suggested the use of words like “fluctuating”, “fluctuates” or “fluctuation” to clarify the experiences the section was addressing.

Similarly, at multiple engagement events the 50% rule was described as confusing, complicated, unclear and “not translating well to people filling in the form”. Participants felt the rule was difficult for both applicants to quantify and for case managers to apply. The small size of the open text box for both the 50% rule and the reliability criteria was also identified at one event as barrier to understanding, as this leads applicants to think that case managers do not require a lot of information.

No consideration of impact of bad days on life and wellbeing

Some felt that the fluctuating conditions section was ineffective at capturing the continued impact of bad days on a client’s life and wellbeing in the longer term.

“Doesn't score someone if they have two bad days a week, even though those two days have a massive impact.” – Individual

“It is not possible to hold down a job if you are bed bound 20% of the time, yet you wouldn’t qualify for support if this was the case.” - Individual

The way conditions can fluctuate either rapidly over short periods of time or extremely, leaving people fine one moment and bedbound the next, was mentioned by some. They felt these rapid or extreme changes were not accounted for in the guidance or application form. A few noted how this can make reporting fluctuating conditions difficult. One noted that the experience of fluctuating conditions is so individual or specific to each condition that it makes a single understanding of them, as requested in the application, ineffective.

Not reflective of certain conditions

A concern that the application form did not capture all conditions well was referenced by some. While some respondents spoke universally, expressing a view that the section was too rigid in presenting a single idea of fluctuating conditions, others mentioned specific disabilities or conditions they felt were excluded from the application questions. These included: non-physical disabilities, Long Covid, Functional Neurological Disorder (FND) and other neurological conditions.

Difficulty describing impacts

A few respondents found it difficult to describe the impacts of their fluctuating conditions within the application form. Although they did not provide any further details on how to improve the application form to collect this, one respondent noted a positive experience with the Local Delivery Service who helped them articulate the impact of their condition well.

“How can another individual who is assessing you possibly understand my condition and how it fluctuates. It is one of the hardest things for me to describe the intensity of my pain. How do I apply that to a piece of paper?” - Individual

Positive comments about fluctuating conditions sections

In contrast, some respondents felt that the fluctuating conditions section of the application form representing people’s conditions or disabilities and allowed them to reflect on their individual circumstances. Respondents liked the examples provided in the application and felt there was ample space to describe conditions. Singular comments were received about the experience of applying, of feeling accepted when admitting having good as well as bad days or being able to describe how a condition uniquely impacted them.

“The daily living activities goes over many aspects of one's day and so there is ample opportunity to talk about how one’s condition affects their life in even the simple small details. This helps paint the picture for the reviewer to fully understand the daily life of who is being reviewed.” - Individual

One noted that while they found the application easy to fill out, there was still concern about how a case manager may interpret the information provided.

Q11A. If there was an opportunity to change any specific parts of the rules around fluctuating conditions as part of the daily living activities, what changes would you make (if any)?

Change the 50% rule

Just over half of respondents provided an answer at Q11A. Of those, there were two equally prevalent themes. The first was a suggestion to change the 50% rule. Suggestions included changing the guidance to a sliding scale depending on how often or how severely a condition impacts a person’s life, or to make it a 30% rule rather than a 50% rule.

“The ALLIANCE have consistently called for the 50% rule to be scrapped… Although daily living and mobility are considered separately, the same logic applies to both in relation to fluctuating conditions. We believe this approach may not give an accurate indication of the impact of a person’s condition. Whilst the 50% rule applies both to stable and fluctuating conditions, the negative impacts of this approach may be most strongly felt by people living with fluctuating conditions. The nature of fluctuating conditions is such that it may not be possible for people to predict or estimate how frequently they will be impacted. Understanding how people are impacted on their worst days would likely be more useful, both in terms of determining support that may be necessary and reassuring applicants that their experiences are valid and will be taken into account.” – The Health and Social Care Alliance Scotland

Consideration of impacts of daily activities

An equally prevalent theme emphasised the importance of asking about the impacts of daily activities on people with fluctuating conditions rather than just asking whether certain tasks can be accomplished. This could include considering the pain arising during or after the activity, the necessary recovery time and pain relief needed to recover.

“Each daily living activity needs to include a reference to fatigue and delayed fatigue post-activity e.g. how do you feel afterwards? And what impact does doing this activity have on your ability to do other activities?” - #MEAction Scotland

Others suggested changes

A few respondents provided other suggested changes to the rules around fluctuating conditions which are listed here from most to least prevalent:

• A dedicated part of the application form for people with fluctuating conditions, including different ways of gathering evidence supporting information such as a diary of bad days.
• Make application wording clear that fluctuating conditions are recognised and considered.
• Provide more assistance to help those with fluctuating conditions fill out the form correctly.
• Ensuring that any revisions to the application form are developed with input from those with lived experience of fluctuating conditions.

Case manager training

While not directly answering the question, others mentioned the need for case managers to receive more thorough training around specific conditions, including fluctuating conditions, to help them understand the impact the life and wellbeing of the client.

Q11B. If you proposed changes, what positive impacts could these have, and for who?

Just over two fifths provided a comment at Q11B. The most prevalent theme was a belief that the changes would provide improved outcomes for those with fluctuating conditions. Some suggested it could lead to more points and therefore higher Adult Disability Payment awards, which could improve financial security for those with fluctuating conditions. A few suggested that it could improve the quality of life by allowing those with fluctuating conditions to have the correct help organised for when bad days occur.

Some thought that the changes would provide those with fluctuating conditions a sense that their voice had been heard and considered. They emphasised that the changes suggested were necessary to ensure those clients with fluctuating conditions were taken seriously and treated with dignity and respect. A few noted that it would allow people to fully comprehend their conditions and the impact on their lives.

“This would help people to actually looking more at how their condition affects them in order to have a better understanding of their abilities in doing things that the forms are asking. This would then help the accessor to understand more about that person and therefore to help in making a decision.” - Individual

An outcome mentioned by a small number was that the application with the additions mentioned would be fairer and lead to fewer re-determinations and appeals.

Q11C. If you proposed changes, what negative impacts could these have, and for who?

Just over one third of respondents provided a comment at Q11C. The most prevalent theme by far was that the suggested changes would lead to no negative impacts for those with fluctuating conditions.

Two individuals suggested that the changes may make Adult Disability Payment more costly for the Scottish Government as more people could qualify or be awarded a high rate. Two respondents suggested the changes could lead some clients to lose points and either not qualify or lose their award; however, they did not explain how this would happen.

One respondent each mentioned the following themes:

• There was concern that adding more elements to the application may make the application more difficult to complete.
• Similarly, there was a suggestion that the application could become more confusing.
• One respondent noted that any increased contact with Social Security Scotland staff to clarify aspects of fluctuating conditions may cause greater amounts of stress among clients.