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

Fluctuating Conditions criteria

Panel members were also asked about the criteria for fluctuating conditions. Participants were asked if they had any personal experience of trying to explain a fluctuating condition and if they think that these criteria can ensure that a person with fluctuating conditions has their needs fully met. Participants were also asked in what ways fluctuating conditions might impact on people differently and how Social Security Scotland can best communicate how a person with a fluctuating condition should use the criteria.

For people with a fluctuating condition, the descriptor that applies for a particular activity will be established as follows:

If one descriptor is satisfied on over 50 per cent^[4] of days

That descriptor

If two or more descriptors are each satisfied on over 50 per cent of days

The descriptor that scores the higher or highest number of points

If no descriptor is satisfied on over 50 per cent of days, but two or more descriptors when added together amount to more than 50 per cent of days

The descriptor which is satisfied for the greater or greatest proportion of days, or

Where both or all descriptors are satisfied for the same proportion, the descriptor which scores the highest number of points

When someone applies for ADP for the first time, the period of time considered when looking at whether a person's condition fluctuates is the:

• 13 weeks (about 3 months) prior to the date of application is made, and
• 39 weeks (about 9 months) from the date the application is made.

Case managers within Social Security Scotland will also consider whether someone can complete an activity reliably. To complete the activity "reliably" means that they can do so:

• safely – in a manner unlikely to cause harm to themselves or to another person, either during or after completion of the activity.
• to an acceptable standard – to a reasonable standard for the activity, taking account of the impact on the individual of carrying out the activity to that standard.
• repeatedly – as often as the activity being considered is reasonably required to be completed.
• within a reasonable time period – no more than twice as long as the maximum period that an individual without a physical or mental health condition would usually take to complete that activity.

Participants were also informed of the following key changes made by the Scottish Government:

• Providing a legal definition of what it means to carry out an activity to an acceptable standard, so that it considers factors such as pain and fatigue. This is not defined in the equivalent PIP regulations.
• Amending the definition of what it means to complete an activity safely, to make clear that the person's ability to move must be undertaken in a way that is unlikely to cause harm.
• Developing a prompt tool to ensure practitioners cover the reliability criteria and help them to ask questions relevant to a particular disability or health condition.

General views on the Fluctuating Conditions criteria

Survey respondents were asked to provide feedback on the Fluctuating Conditions criteria based on:

• How suitable they thought the criteria were for understanding how someone's condition can fluctuate.
• How clear and easy to understand they found the descriptors.
• How easy they found it to choose a descriptor which reflects how their own condition fluctuates over time.

Suitability

Almost half of respondents (45 per cent) agreed that the descriptors were suitable for understanding how someone's condition can fluctuate. However, more than a third (35 per cent) disagreed. A fifth of respondents (20 per cent) neither agreed nor disagreed.

*Figures may not add to 100 per cent due to rounding.

Understanding

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). However, around a fifth (19 per cent) strongly disagreed. The same proportion (19 per cent) neither agreed nor disagreed.

*Figures may not add to 100 per cent due to rounding.

Using the descriptors

When asked if they found it easy to select a descriptor that reflects their own fluctuating condition (if they have one) more respondents disagreed than agreed. Half of respondents (51 per cent) disagreed, compared to just under a third (31 per cent) who agreed. More than a quarter (26 per cent) of respondents strongly disagreed.

*Figures may not add to 100 per cent due to rounding.

Positive feedback

A number of interview and focus group participants provided positive feedback on the fluctuating conditions criteria. Comments included that although the criteria were still felt to be complicated, using the 50 per cent format was an improvement as this does not rely on how someone had felt over the last week but could be generalised to better account for fluctuations over a longer period of time.

"It's really difficult to explain to someone who has never experienced it. But, it's really important, it's a positive change. Because, some days I don't feel too bad and other days I can't move because of pain. And then when you get these forms in you don't know what to put in what box. Because it says something like 'in the last week' and I think well, I had quite a good week last week, but the four weeks before that I was awful. So, at the moment that's the sort of thing they use which isn't good. That's a positive, you know "50 per cent of the time" is a good way to do it. And I think that's a good, positive change which should help." (Interview participant)

Other participants welcome the increased focus on factors such as time, safety and fatigue.

"Looking at what the Scottish Government are proposing [the additional changes to take into account safety, time and acceptable standards for completing an activity], that's the kind of thing that should already be there but isn't. It's factors like these that should be taken into consideration but aren't." (Interview participant)

Confusion over criteria

However, a number of participants and survey respondents commented that they found the criteria to be too complicated and confusing, particularly if their conditions were affecting their concentration.

Participant 1: "I just couldn't work it out at all."

Participant 2: "It's just not clear."

Participant 3: "Well…it's complicated." (Focus group discussion)

"I found the current descriptors really confusing to read with foggy fibromyalgia brain - simplify please." (Survey respondent)

In some instances, this confusion led to a misunderstanding of the circumstances that the descriptors were outlining, indicating how this may affect a person's responses during application or review.

"How can two descriptors apply on "over 50 per cent of the time" - that's more than 100 per cent! Needs explained better." (Survey respondent)

"That is really confusing. It seems to be assuming that a condition that fluctuates is 50/50, and it isn't. I don't know anybody's that is." (Interview participant)

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. For some, this was because they found it hard to estimate how their condition fluctuates due to variations in their symptoms over time.

"I found it difficult putting a percentage figure on, because I didn't use percentages, but I used sort of 'This happens all the time' – that's easy. But once you get into the fluctuating bit, saying this might happen four days out of seven, or whatever – it's very difficult actually to come up with that. Because in an average week, one week you might want to try and go out every day and find that you can do it five out of seven days to a familiar place, but some weeks not. It's a snapshot." (Interview participant)

Provide examples

Some survey respondents commented that it was very difficult for somebody with a long-term condition to judge how different their own mobility is to that of someone with no mobility issues, and where there has been a gradual deterioration over time.

"Again, you demand self-knowledge from someone who has been getting incrementally worse for perhaps decades. The measurement against a 'norm' is impossible to quantify for such a person. This seems like an exercise in further cruelty." (Survey respondent)

A few participants and respondents suggested that there would need to be examples included in order to help applicants understand this.

"Examples need to be given on what is considered a reasonable time to take to do a task. A person may not realise they take a lot longer to do something than others." (Survey respondent)

One participant suggested that providing examples which illustrate what fluctuations might look like in terms of number of days could help people to understand what is meant by the percentages used in the fluctuating conditions criteria.

"Perhaps in the examples you can say, perhaps you can do this five days out of seven, or four times out of seven or whatever – and just get people into the thought of 'how often does this happen to me?'" (Interview participant)

Survey respondents were asked to comment on the suggestion to provide an example using number of days, with slightly more than half (59 per cent) agreeing. A quarter (25 per cent) neither agreed nor disagreed, and 16 per cent disagreed.

*Figures may not add to 100 per cent due to rounding.

More flexibility to describe the effects of conditions

However, others stated that they needed a more flexible, holistic way to describe how their condition affected them, and that it could be difficult to think about the complex ways their conditions affected them in the terms used by the descriptors.

"It's important that they know just how tricky some people find relating their experience that they're living to something which is out on a piece of paper and says 'Is it this or that?' Sometimes you need a lot of help just to elucidate what actually is your experience." (Interview participant)

One participant argued that it would not be possible to consider how conditions fluctuate using set criteria as conditions and how they affect different people can vary widely. They suggested a more flexible approach could be used.

"To be honest with you, you'll never be able to put it into rules. For the simple reason that what you're trying to do is pigeonhole human beings. What you have to do is allow flexibility and how that flexibility comes out with assessing is that you need to look at that person as an individual, be holistic with them." (Interview participant)

Survey respondents were asked to comment on the suggestion to have greater flexibility through looking at an individual's circumstances holistically, with the vast majority (86 per cent) agreeing. Just over one-in-ten (12 per cent) neither agreed nor disagreed, and only 2 per cent disagreed.

*Figures may not add to 100 per cent due to rounding.

Unpredictable conditions

As mentioned above, many participants and respondents described difficulties in trying to think of their condition in terms of averages or percentages, related to how fluctuations in their condition vary across time. Similarly, many described the unpredictability of fluctuations as a major challenge to measuring their conditions against the criteria.

"There are NO patterns to many fluctuating conditions. It can change by day or by week or by month. Nobody can plan for that reason, not know[ing] when a change will occur." (Survey respondent)

A few participants disagreed with the criteria as their condition – or that of the person that they were caring for – was not only unpredictable but also seldom triggered. This meant they may not fulfil the criteria for a fluctuating condition over a period of time, despite very serious consequences when their condition was triggered.

"I do not agree with 50 per cent rule, mainly because of epilepsy. My son is epileptic, it is a stupid rule, to be honest. He would have to have, in the present conditions, he would have to have a seizure every other day to be qualifying for payments. And it is a life-threatening condition, so it should be a lot higher up the scale." (Interview participant)

Others stated that the unpredictability of their condition meant it could not be accurately described as constant or fluctuant.

"[My condition] is described as fluctuant because it's not constant, but that's still not an accurate term. These things can happen at any stage, at any time during the day. If I'm out and about there's more risk of it, but I can't state categorically that 50 per cent of the time [it will happen]." (Interview participant)

Triggers

Unpredictability was often linked to triggers or intersecting factors which may cause a sudden change. This included events or circumstances that were hard to predict or avoid, such as weather, pollen, and time of day. For some participants and respondents, this meant that attempting to generalise how much their condition affected them over a period of time was difficult.

"I mean you've got epilepsy, even things like severe asthma, COPD [chronic obstructive pulmonary disease], where some days you're fine and some days you're really bad, particularly in the summer with pollen or in the winter when cold weather affects lungs." (Interview participant)

"It's not practical, it's not logical. Fluctuating conditions don't always have averages. It just doesn't work that way […] The other thing is one thing can trigger another, so you can do one thing but then something else happens. So, fluctuating conditions quite often have a massive amount of triggers. I might be perfectly fine, but then if I leave the house I will not be fine. […] It's not about can you do it or can't you do it, but it's about everything affects each other and you won't ever have averages, it won't ever be 50 per cent of the time, or four days a week. It just doesn't work that way." (Focus group participant)

"I have a mobility issue that varies each hour of the day. There seems to be no defined way to express this on any of the multiple forms that need to be completed." (Survey respondent)

Lifestyle adaptations

A few participants and respondents related the triggers for their conditions to activities that they chose to undertake. They stated that limiting what they do, and lowering their quality of life, would reduce how often their condition was triggered and could result in them meeting different criteria. As a result, they suggested that the decision-making process needs to be more aware of when someone meeting a certain criteria is related to these life-limiting adaptations.

"It almost feels with these kinds of descriptors that if I chose not to be here today, I probably wouldn't tick all these boxes [I would feel better]. But because I want to have a life, which is my right and I should be able to participate in life fully, it might tick some of these boxes." (Focus group participant)

"Criteria for reassessment should take into account how someone has adapted their life to cope. It may be possible to reduce other things and thus quality of life to allow one to do more of something else." (Survey respondent)

Automatic qualification

Some participants and respondents felt that there should be automatic qualification for certain conditions – such as those which are long-term or cause constant or chronic pain and fatigue – or circumstances where many different conditions have a cumulative impact.

"In my case, I have several things that fluctuate. Obviously, that has a very pronounced knock on cumulative effect, so I think in instances like this, there comes a point where it's automatic to supercedes the points." (Survey respondent)

"My condition gives me constant and various levels of pain all over my body, I agree that some conditions should have automatic qualification, such as fibromyalgia or similar conditions which result in chronic pain and fatigue." (Survey respondent)

Survey respondents were asked to comment on the suggestion to have automatic qualification for certain conditions. Almost all (93 per cent) respondents agreed with this, with only 2 per cent disagreeing.

*Figures may not add to 100 per cent due to rounding.

Degenerative or deteriorating conditions

Others suggested that conditions which have progressively worsened over time or are degenerative need to be considered differently to 'static' conditions.

"In my own case it is a day-to-day basis. Also, over the years my condition has deteriorated causing more discomfort and pain so I feel it's important to have that taken into consideration." (Survey respondent)

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, as people would self-assess based on their worst days.

"This criteria just invites dishonesty. People know what answer is the *right* one." (Survey respondent)

Participant 1: "Surely you would put down your worst day? […] I think it's a waste of time."

Participant 2: "I'm not 50 per cent of this or 50 per cent of this, every second of the day I get up I am masking, I am this, I am that. How do you tell them that every minute of every day is affected? Every minute is calculated."

(Focus group discussion)

Others suggested that they felt themselves to be constantly living with disability even if they were not currently experiencing a flare-up in their symptoms, making the idea of a 'fluctuating condition' irrelevant.

"How can I say this? They might not be telling the truth […] If you ask somebody who's disabled do you have a good day and a bad day? Well, when you're disabled, you're disabled 7 days a week, 24 hours a day. So, are you really gonnae have a good day? What equates to a good day and what equates to a bad day? You're disabled, it's as simple as that. I wake up every morning and I'm in a mess. I go to my bed at night and I'm in a mess. I'm in severe pain. I take morphine for the pain and everything. So, for me personally, I've either got a bad day or a worse day. I don't have good days at aw. I think there can be too many questions at times, that people can twist to get the points they need." (Interview participant)