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

Planning and Following Journeys criteria

As with the Moving Around criteria, panel members were asked for their views on the Planning and Following Journeys criteria. This included any positives or negatives to the descriptors, their personal experiences of assessments and consultations, anything that they felt was missing from the criteria, and if they felt that the criteria reflected the kinds of activities that someone may need or want to carry out in day-to-day life. Participants were also asked for any suggestions they may have for how to consider a person's ability to plan and follow journeys better or differently, or how to improve the criteria.

This activity looks at a person's ability to plan and follow a journey outdoors, either on a familiar or an unfamiliar journey.

Consideration is given to a person's ability to:

• plan the route in advance.
• leave home and go on the journey.
• follow the route once they leave home.
• deal with unexpected changes during the journey (such as diversions or roadworks).

Safety risks are also considered, such as:

• a tendency to wander into the road.
• being unable to cross the road safely.
• the risk of self-harm.
• symptoms of overwhelming psychological distress.

General views on the Planning and Following Journeys criteria

Survey respondents were asked to provide some general feedback on the planning and following journeys criteria based on:

• How suitable they thought the descriptors were for considering someone's ability to plan and follow a journey.
• How clear and easy to understand they found the descriptors.
• How easy they found it to choose a descriptor which reflects their own level of ability when planning and following a journey.

Suitability

Almost half of respondents (46 per cent) agreed that the descriptors were suitable for considering someone's ability to plan and follow a journey. However, more than a third (38 per cent) disagreed, with 16 per cent strongly disagreeing. The same proportion of respondents (16 per cent) neither agreed nor disagreed.

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

Understanding

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, with 9 per cent strongly disagreeing. Close to a fifth (18 per cent) neither agreed nor disagreed.

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

Using the descriptors

Almost four in ten (39 per cent) 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 that they would find it easy to use the descriptors, with 16 per cent strongly disagreeing. The same proportion (16 per cent) neither agreed nor disagreed.

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

Confusion around criteria

Participants and survey respondents expressed some 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, and wanted it to be made clearer if this was related only to mental health and psychological conditions, or if it also included physical conditions.

"When we read that, we didn't think that meant what it actually means, which we know now. Can you plan and follow the route of a journey unaided? Well, I can't because I can't follow any route or journey unaided because I use a wheelchair. But I don't think that's what it actually means. It means can you, sort of, mentally follow the route of a journey […] but it's quite an ambiguous statement, planning and following a journey." (Interview participant)

Relatedly, several participants and survey respondents expressed uncertainty over how to select the criteria because they were unsure if they were also being asked about physical barriers to planning and following a journey. This was reflected in some confusion over how to answer the criteria when someone was able to plan a journey but not physically follow it.

"This doesn't say anything about not being able to drive, not being able to take a bus, because you cannot be sure that there will be a place for you to sit because you can't stand for any length of time. Will there be wheelchair access? If it's public transportation and you're in a wheelchair you can't follow the route of a journey because there's no space for a wheelchair access. So, I'm not sure where these are coming from, if they're supposed to be purely psychological or not?" (Interview participant)

"To me it sounds like a psychological thing, it's to do with your mind. You know, the first question is can you plan a trip? Well, yes, but I cannae [follow it], because my legs are knackered, I cannae walk. So, how do I answer that?" (Interview participant)

A few participants stated that these criteria needed to be titled differently to make it clearer what is being considered.

"If these are all regarding only the psychological component it needs to say that, maybe at the top." (Focus group participant)

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.

Separating planning from undertaking a journey

Some participants suggested that the planning stage should be separated from actually undertaking a journey as they relate to different abilities.

"I would like to see planning and following of a journey uncoupled. You might have the confidence to follow a route, but not have the ability to plan a route. So, in order to avoid the possibility of people slipping through the cracks, or again having that situation of oh, I can only answer half a question, we need to unbundle the two." (Interview participant)

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 and only 4 per cent disagreeing.

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

Separating mental health, cognitive and physical issues

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

"Mental health difficulties shouldn't be considered in this category alongside those with cognitive issues." (Survey respondent)

"Mental ability needs to be assessed separately, or have special assessment if mobility also requires to be assessed. Everything can't always be lumped in together." (Survey respondent)

Separating familiar and unfamiliar journeys

A few respondents and participants suggested that separate criteria could be used for different types of journey, for example, familiar or unfamiliar.

"Familiar and unfamiliar journeys: at [criteria] C, may be able to plan familiar but not unfamiliar [journeys]. Separate planning and undertaking journeys; separate familiar and unfamiliar journeys." (Survey respondent)

"I think it needs to separate where you've got a familiar journey that you do every week, or something that's out of the ordinary." (Interview participant)

As part of the follow-up survey, respondents were asked to comment on the suggestion to separate familiar from unfamiliar journeys. More than three-quarters (77 per cent) agreed. A small number (6 per cent) disagreed.

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

Mental health and cognitive conditions

Unpredictability

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 as an unpredictable event that can affect their ability to travel, rather than a fluctuating condition.

"I can plan and follow but it takes a huge amount of effort and anxiety […] Because there are lots of times that I am able to go somewhere that I'm very familiar with. But, sometimes it crops up and I'm really just extremely anxious about even going out of the house." (Interview participant)

Criteria not suitable for certain conditions

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.

"These are not designed for people with learning disabilities, in all honesty […] Outside of his local environment, [my brother] wouldn't be able to book and plan [a journey]." (Interview participant)

"You're also looking at the fact that for that planning and following a journey, people who have got visual impairment, people who have got hearing impairment, there's another reason for why the title is wrong. They're not cognitively impaired: they can't see or hear." (Interview participant)

"This activity really lets down people who are neurodiverse (ADHD, Aspergers, autism), it treats people in this category as if they must have a cognitive deficit to qualify, rather than recognising these are conditions with complex neuro processing." (Survey respondent)

Journeys

Many participants and survey respondents commented on the journey aspect of these criteria, across a range of different topics.

Journey type or reason for travel

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.

Participant 1: "What kind of journey? Is it a walking one, or…"

Participant 2: "Walking journey, or it's actually to take a transport or…"

Participant 1: "Work out the buses, are you taking the underground?"

[…]

Participant 2: "Some people might be confident in doing one, but not doing others."

(Focus group discussion)

"There could be a definition of a short walking journey where crowds may be overwhelming, or a longer car or bus journey. Most cars have sat navs, but having to change buses or trains again can cause anxiety and distress!" (Survey respondent)

One survey respondent also commented that the reason for making a journey, rather than its familiarity, can affect an individual's ability to plan and follow the route.

"A person's ability can vary a lot depending on why the journey has to be made, i.e. shopping or a funeral." (Survey respondent)

Obstacles or unexpected issues during a 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. Examples given of obstacles included roadworks, diversions and a lack of accessible transport such as no disabled spaces on public transport, or no toilet access.

"None of the above planning criteria has anything to do with a person's mobility, but more their mental acuity, confidence, or the simplicity of the journey. In all cases, anything unexpected can influence the time, physical, mental/stress levels involved." (Survey respondent)

"A familiar journey may be planned but when encountering road works and diversions can cause disorientation and extreme distress." (Survey respondent)

Changing ability during a journey

Respondents and participants highlighted that people may also experience varying levels of ability during the journey itself, and that this can be due to diminishing energy over time or unexpected issues which are difficult to account for when selecting criteria. Respondents and participants included mental tiredness ('brain fog'), physical fatigue, unpredictable conditions, needing assistance from another person, stress and anxiety as factors which can unexpectedly affect their ability to successfully follow a planned journey.

"It's the unpredictable events that exacerbate variable things like fatigue, exhaustion, pain levels, brain fog, etc. that make these criteria seem way too 'clean'. Living with disabilities is a fluctuating challenge. Fixed criteria oversimplify journeys." (Survey respondent)

"I've done it myself, planned journey, got half way, realised I couldn't make it back without help." (Survey respondent)

"My son is epileptic and he could do all these things like plan a journey, but if he has an absence, it will throw him off and he couldn't do it, he'd be lost, he'd be in the middle of a journey and he'd be lost." (Interview participant)

Distress

Participants and respondents made a variety of comments around the topic of distress, both in terms of how best to account for distress that is caused when planning or following journeys, and around the use of the term 'overwhelming psychological distress' within the criteria.

Distress when planning or following a journey

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 undertaking travel, without reaching levels that fully prevented it. This could also result in disproportionately long preparation times for only short journeys.

"The only thing I've mentioned is just the sheer effort of how much planning it takes. You know, can plan and follow, is, yeah it might be true but it might have taken three days out of your life. So, I guess something around there is the only thing I would say because it can actually be quite severe, even if at the end of the day you do actually manage to get out of the door with somebody and do the journey." (Interview participant)

"Needs to emphasise more how stressful it is. Also how mentally and physically draining planning and following a route is, both during and how long to recover. How much time you need to prepare for a journey. The preparation could take days for something short." (Survey respondent)

Overwhelming psychological distress

Other participants and survey respondents stated that they felt situations where someone experienced overwhelming psychological distress needed to be considered differently within the criteria (descriptors B and E).

"Under (e) should be an automatic 12. (e) is a higher standard than (f). If you're housebound, then surely that should score higher. They should be on a par." (Interview participant)

"B should score six points as it is quite overwhelming." (Interview participant)

A few participants and respondents wanted to see a clear definition of what constitutes overwhelming psychological distress.

"I think one of the things that's missing is some kind of definition of what constitutes overwhelming psychological distress. And whether or not there is an objective or a subjective measure that can be used there." (Interview participant)

Survey respondents were asked to comment on this as part of the follow-up survey. More than three quarters (76 per cent) agreed with the suggestion to include a definition of 'overwhelming psychological distress.' Less than one in ten (9 per cent) disagreed, and 15 per cent neither agreed nor disagreed.

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

However, a few participants and respondents suggested that the term should be removed as it was too narrowly focused on psychological distress, or implied that an unnecessary level of suffering was needed to qualify for the points.

"Is there really a need for "psychological" distress? It's medically based, offensive and irrelevant as long as severe distress, can be highlighted and witnessed." (Survey respondent)

"[Overwhelming psychological distress] is a horrible phrase. Because, what you're actually describing there, from a mental health perspective, is watching someone quite literally tear themselves apart. That is what you're actually describing. So, we have got to, as human beings, be reduced to that level before they'll be considered for assistance. Rather than looking at the assistance preventing that overwhelming distress." (Interview participant)

Use of orientation aids

Some participants and respondents' comments reflected uncertainty around what counts as an orientation aid for planning or following a journey. These comments 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.

"Surely everyone can't follow a plan, because we all use the maps function on our phone […] no-one follows a journey unaided if you're going somewhere new." (Interview participant)

One survey respondent stated that they were aware of someone losing support because their use of a phone was deemed to have changed their ability to plan and follow a journey.

"I've assisted someone who uses a phone to plan a journey but can't actually use the information because of her condition and has lost the benefit because she could use her phone to plan it, so the phone use was deemed as achieving the goal, not good!" (Survey respondent)

Remove aids from decision-making process

One participant suggested that aids be removed from the decision-making process, so that only a person's unaided ability is considered. As part of the follow up survey, respondents were asked if they agreed or disagreed with this suggestion.

"I would take out the [orientation] aid, because again an aid makes it better or easier to do something and it should be assessed on how bad the person is, not how good the person can be with a support." (Interview participant)

Almost three quarters (71 per cent) of survey respondents agreed with this suggestion, with less than one in ten (8 per cent) disagreeing. However, almost a fifth (21 per cent) neither agreed nor disagreed.

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

Impact of literacy on planning and following a journey

One focus group also highlighted that issues such as literacy affect someone's ability to plan and follow journeys, and their ability to use common aids such as mobile phones.

Participant 1: "Literacy. Because there's nowhere where it takes into consideration if you're not able to read."

Participant 2: "Or write."

Participant 1: "That's right."

Participant 2: "Or even do some research. Even though everybody has a mobile phone these days, if you can't read…"

(Focus group discussion)