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

5. Rules about who can get Adult Disability Payment

Rules that decide whether someone is entitled to Adult Disability Payment are called the eligibility criteria. Adult Disability Payment is made up of two parts, a daily living component and a mobility component. As a separate consultation of the mobility component was conducted recently, this aspect of the eligibility criteria was not considered in this exercise. More information about the daily living component is provided in Appendix D.

Two sections of the consultation covered the rules about who can get Adult Disability Payment and asking about a person’s daily living activities. This was also a focus of much of the discussion at the engagement events. However, because there was significant overlap in the themes evident in responses about these issues, analysis of both sections has been combined into this chapter to minimise repetition. It should be noted that questions about the eligibility criteria were not asked in the call for evidence.

Many respondents considered the rules, the nature and wording of the daily activities, and how these are asked about in the Adult Disability Payment application form, as one in the same. Where possible, a distinction has been made between themes related to the activities and about filling in the Adult Disability Payment application form.

Key findings

Daily living activities

• Views on the clarity of the rules for the daily living part of Adult Disability Payment were mixed. One third (35%) of consultation respondents agreed that the rules for the daily living part of Adult Disability Payment are easy to understand. Just under half (48%) disagreed and 17% were unsure. Reasons for disagreeing included vague terminology, difficulties relating the activities to real life, and difficulty applying them to fluctuating conditions or other specific conditions like Long COVID, ME/CFS, autism spectrum disorder, or mental health conditions. Respondents recommended clarifying the rules and simplifying the language to make the daily living component easier to understand. Others suggested using more illustrations, while participants at events emphasised the importance of accessible support for those applying.
• The vast majority (87%) indicated that people with certain conditions might find it difficult to receive points for any one or more of the daily living activities. The most common view in comments was that people with certain conditions could struggle to be considered adequately under the existing daily living activities, including a belief that the current activities were too focussed on physical disabilities. Others thought that their conditions were too difficult to describe and would struggle to reflect the impact of their conditions in the existing activities.
• Consultation respondents suggested making the activities more inclusive of all conditions, including fluctuating conditions, and ensuring that the criteria reflect the needs of those who currently feel underrepresented by the application process. There were also calls for greater transparency about the point allocation.
• Another theme reiterated throughout the consultation and engagement events was that Social Security Scotland staff would benefit from more training to better understand certain conditions and the impact they have on people’s lives, therefore ensuring effective decision-making.

Reliability criteria

• Consultation responses about the clarity of the reliability criteria were also mixed. One third (33%) felt the reliability criteria are easy to understand, just under half (45%) felt they were not, and one quarter (23%) were unsure. Those who felt they could be clarified recommended that a ‘reasonable time period’ be better defined and proposed using more examples to improve applicants’ understanding.
• Participants at the consultation events shared similar views but also suggested other changes to enhance understanding of the reliability criteria. This included referencing the reliability criteria in or at the start of the Adult Disability Payment application form and explaining reliability and the 50% rule on any initial communication.

ADP application form:

• Two thirds (68%) of those who answered felt the daily living part of the Adult Disability Payment application is effective at helping Social Security Scotland understand a person’s daily living needs; 11% felt it is ‘very effective’, 20% ‘effective’ and 37% ‘somewhat effective’. The remaining third (32%) felt it was not effective.
• Among those who felt the form was somewhat or not effective, the most common explanation in comments was that the daily living part of the application was overly rigid. Others felt that it did not reflect certain conditions or capture all relevant information or evidence.
• Similarly, event participants frequently described the application form as long, daunting, exhausting, and too difficult, and highlighted the need to consider the emotional impact on clients of completing a long and complex application.

Daily Living Activities

Q6A. Do you agree or disagree that the rules for the daily living part of Adult Disability Payment are easy to understand? You can check the Adult Disability Payment information page if you need a reminder of the rules.

Q6B. Please give reasons for your answer, outlining which parts you think are easy or difficult to understand and why.

Respondents	Agree	Disagree	Don’t know	No answer
No. of respondents (n=84)	28	39	14	3
All respondents (%) (n=84)	33	46	17	4
All answering (%) (n=81)	35	48	17	-

One third (35%) of consultation respondents who answered agreed that the rules for the daily living part of Adult Disability Payment are easy to understand. Just under half (48%) disagreed and 17% were unsure.

Vague or unclear terminology and questions

Over four fifths of consultation respondents left an open comment to explain their answer, mostly highlighting difficulties people could have in understanding the rules. Several, most of whom disagreed the rules were easy to understand at the closed question, felt the rules were not clear enough. This view was endorsed across multiple engagement events.

Reasons given for difficulty understanding included, in order of prevalence:

• Questions being vague, contradictory or unclear.
• Being unable to understand the rules generally.
• Questions being too similar or repetitive.
• The thinking behind questions not being given, so unsure how to answer.
• That it is unclear what ‘reliably and repeatedly’ mean in practice.
• That illustrative examples were needed.

“The questions are very repetitive, and I sometimes feel that they are this way to try and catch a person out, because you can ask two different questions, but they amount to the same answer. This confuses me.” – Individual

Difficulties relating the activities to real life

People finding it hard to see how the activities relate to their own lives was an issue raised by several consultation respondents, including three organisations. Most commonly, it was noted that support was needed to help people describe their situation or the impact of their condition effectively within the context of the activities, or that relevant daily activities were not included.

“However, I feel that it can be difficult to articulate how my conditions affect me on a daily basis. I know this is something that others struggle with too, from reading experiences of others on social media, forums etc.” – Individual

The most prevalent theme in comments at Q13B (What other issues with the daily living activities do you think need to be considered?) was suggestions for other activities to be included. Respondents suggested that sleep, engaging socially and managing unplanned events could be included. Participants at engagement events suggested additional areas could be housekeeping, IT literacy, quality of life, communication support, filling in forms, being part of a community, whether assistance is needed to take medication and the impact of medication side effects. Calls were made at engagement events for the eligibility criteria to be more aspirational or modernised.

“These are a direct copy from PIP and contain a lot of ambiguity… Modern daily living has changed a lot since these were put together. There should be a complete review." - The Neurological Alliance of Scotland

Event participants also expressed the view that more detail was needed to help understand aspects of daily living activities that are already in the application, including managing washing and bathing, managing toilet needs, and preparing food. They felt greater emphasis should be placed on how people complete those tasks and the impact it has on them, rather than whether they can be completed.

To illustrate, two organisations raised issues with the preparing food activity, with #MEAction Scotland reflecting it was unclear if all the tasks involved in achieving an activity are considered in the application form or decision-making process. They highlighted that tasks involved with this activity included preparation and clearing up of equipment, utensils, work surfaces, washing up, drying and putting away after each meal, washing, cleaning the area and paying for food items in a shop, with all that entails, including getting there and back and waiting to pay. Participants at engagement events also added that more points should be awarded if the only food an applicant can prepare is of poor nutritional value.

At a few events it was reported to be hard to gain points for ‘communication skills’ and a review of this was suggested. One organisation raised that a person with learning disabilities can score zero points for ‘reading and understanding questions’, as they can read, but this did not capture difficulties comprehending or acting on the information.

Difficulties for people with fluctuating conditions

People with fluctuating conditions were considered by several to be likely to find the rules difficult to understand. Most commonly, individuals explained how variable and unpredictable symptoms made it difficult for them to complete the form accurately. Greater guidance was called for, for instance, providing more clarity on what constitutes an ‘acceptable standard’ and ‘reasonable time period’, on whether people should consider their best or worst day, and how to explain the impact of pain. More detail about the rules in relation to people with fluctuating conditions is provided in Chapter 6.

“I suffer from Long Covid and my condition fluctuated depending on how much I actually do. I work and have to take to my bed after as my body is in so much pain but I try to get through my day in pain. It’s very difficult to try to explain that to somebody.” - Individual

Easy to understand the rules

The rules and questions were considered easy to understand by some, though two felt the section on fluctuating conditions needed further work. Comments were brief and tended not to explain why they felt the rules were easy to understand. Two felt the rules were clear; for instance, one was able to tell from the criteria that they were eligible while the other felt people should “know what they can and can’t do 50% of the time or more”. Another attributed this to having had support to help them apply.

“I do think the daily living sections allow for the applicant to fully explain their condition on many different aspects of the day and helps to show the reviewer what daily life is like on the simple things such as food, clothing, washing, socialising etc.” - Individual

Difficulties for people with certain conditions

Difficulties certain people may have in understanding the rules, notably those who do not have physical disabilities, were noted by some. A few highlighted specific conditions that could impact someone’s ability to understand the rules, included ME/CFS, Long COVID, autism spectrum disorder, and mental health conditions.

In response to Q13C (Are there any other things you would like to tell us about the daily living part of Adult Disability Payment?) comments included how neurological conditions or memory issues could impact how well applicants can describe how they have completed the activities in the months before the application. It was also suggested that mental health and the ability to do things independently should be considered more in the application.

Q6C. How could the rules around the daily living part be made easier to understand?

Around six in ten consultation respondents left an open comment on Q6C. However, there was a significant overlap with responses to Q7A (If there was an opportunity to change the rules for the daily living part of Adult Disability Payment, what changes would you make?), which was answered by seven in ten respondents. The analysis below therefore presents themes raised by respondents about improving understanding, while themes about wider changes to the rules for the daily living part are presented under Q7A.

Give more detail or clarify the rules

The most prevalent theme was to provide more detail or clarification of the rules around the daily living activities. Respondents raised the need for clearly stated rules, such as to list what is included in each activity, expanding on definitions like ‘acceptable standard’ and asking more in-depth questions about “cooking, bathing, walking or getting out”.

“By asking how it affects them on maybe two out of five days, or something similar. People sometimes get flustered or are unable to understand what is being asked by the question. To have a clear question would help more.” – Individual

A few respondents also recommended that people with lived experience of different conditions, or from different target groups, participate in a redraft of the criteria, application and communication of Adult Disability Payment to ensure that it meets the expectations and captures the necessary information accurately.

Simplify the language

The need for simpler language on the form was highlighted by several individuals, and was raised across engagement events, as a way to make the rules around daily living easier to understand. Comments were received such as the need to ‘word it better’, ‘explain in simple terms’ and to use plain English.

Illustrate the rules more

Some suggested providing more examples of activities, to illustrate how the rules should be interpreted. A few felt that visual aids, including videos or pictures, could be beneficial.

Accessing support

Participants across multiple engagement events raised the importance of applicants accessing support to understand how they fit the descriptors, what case managers are basing their judgements on, and how they can best evidence their abilities and needs in their applications. In a few events, organisational representatives highlighted the skills they need to encourage applicants to share details about their condition and the preparatory work involved in supporting clients with an application such as researching the condition. Organisational participants at a few events noted that training from Social Security Scotland had been beneficial in understanding how best to complete an application form, though others felt they had learnt from experience.

Q8C. Do you think that people with certain conditions might find it difficult to receive points for any one or more of the daily living activities?

Q8D. Please give reasons for your answer.

Respondents	Yes	No	Don’t know	No answer
No. of respondents (n=84)	67	1	9	7
All respondents (%) (n=84)	80	1	11	8
All answering (%) (n=77)	87	1	12	-

The vast majority (87%) of those who answered Q8C indicated that people with certain conditions might find it difficult to receive points for any one or more of the daily living activities. Most of the remaining respondents were unsure (12%).

Conditions that may not be considered adequately

Almost seven in ten respondents left an open answer to explain their answer. Several suggested people with certain conditions that may find it more difficult to gain points. These included those with mental health conditions, learning difficulties, neurological conditions such as ME/CFS, neurodivergent individuals and those with ADHD or Long COVID. In addition, it was suggested that features or symptoms of those conditions could result in people having a limited understanding or clarity about the daily living activities and how they applied to them, potentially leading to points not being awarded.

“People with conditions such as ME/CFS, rheumatoid arthritis etc. which are variable will suffer as they may not meet the 50% rule. There are also conditions that are uncommon and rare, that are misunderstood and discounted (e.g. ME) or cover a wide range of disability (such as autism). These tend to need a specialist to understand how things affect the individual.” - Individual

Difficulties describing certain conditions

The difficulty in being able to adequately describe conditions, or their impact, in the context of the daily living activities was highlighted by several individuals. Comments often drew on personal experiences. Some felt the rules or questions were too rigid to allow people to fully articulate how their conditions impacted them. For instance, while it may be possible to achieve an activity, the consequences of doing so were not taken into account. Two felt describing the impact of their disability was emotionally challenging.

“Speak to me, listen to me, understand my conditions. I feel I don't fit boxes, so I'm dismissed & not taken seriously. It's upsetting & undignified.” - Individual

“I have postural tachycardia syndrome which means I am OK as long as I don’t stand up. When I do I faint. I don’t know where that would fall with the 50% rule as I am not unconscious more than 50% of the time, but I’m at risk 100% of the time.” – Individual

Other considerations should be included

Several left suggestions for other aspects that should be considered within the daily living section. These included, as described previously, pain, energy, fatigue and medication side-effects, for example. This is explored more under Q7A below.

The current approach works

Some stated they agreed that the current activities allowed for the impact of fluctuating conditions to be accounted for. Views included that as long as people were treated as individuals and able to articulate any impacts, then the current approach would work.

Too focused on physical disabilities

A perception was expressed by a few that the form or decision-making process were overly focused on those with physical disabilities. Respondents felt this made it harder for others to be awarded points, as the questions were not aligned to their situation. It was felt those with mental health conditions would experience this in particular, and a view raised in a few events was that the current eligibility criteria are not accurately capturing the needs neurodivergent individuals or those diagnosed with mental health conditions such as anorexia or bulimia. It was suggested during one engagement event that a mental health question could be included alongside each activity.

One consultation respondent explained that completing the form was difficult when there were “so many factors that can impact on mental health issues”. One called for an overhaul of the questions to make them more relevant:

"If your dopamine and serotonin systems are disabled, so you don’t want to do anything, and you are so totally exhausted that you can’t even bring yourself to think about doing anything, it is not easy to get points, because you don’t need help, because you don’t want to do anything anyway… The whole basis of the questions is the 'disabled' person with mobility or sensory impairment. The whole way the questions are framed needs to be rethought.” – Individual

Q7A. If there was an opportunity to change the rules for the daily living part of Adult Disability Payment, what changes would you make (if any)?

Make changes to benefit people with specific conditions

According to several respondents at Q7A, changes to the rules for daily living could make it easier for people with specific conditions to apply for Adult Disability Payment. Conditions identified by respondents included multiple sclerosis, diabetes, ME/CFS, Long COVID, neurological disorders, autism spectrum disorder, mental health conditions e.g. schizophrenia, learning disabilities, communication difficulties, and people with visual impairment. More detail about people with certain conditions is provided under Q8C/D below.

“Make it more disability friendly, easier to read. Not literal. Autistic people can find the literal questions hard to deal with and think there is nothing wrong when often there is.” – Individual

Ensuring the rules can be interpreted by, or reflect, the needs of those with certain conditions was highlighted by some. These comments suggested the application form questions and process should be worded or structured to include activities that take account of the range of circumstances faced by people in daily life. The need for the application to better capture symptoms was highlighted, such asking for more information about pain, fatigue, side effects of medication, cognitive ability and lack of motivation. As noted above, there were also calls to include more questions related to mental health, or the impact of mental health on undertaking daily tasks.

"Reliability is a really important criterion for people with energy impairment conditions (ELCI), but it’s problematic because the energy required to perform any of the activities draws upon the same limited supply of energy, and doing one activity means there is less energy for another activity. Reliability refers to someone who is so exhausted after preparing breakfast that they can’t eat it, or they cannot prepare lunch too. Or someone with ELCI might be so exhausted after preparing breakfast that they can’t get dressed or have a shower. The cumulative impact of activities needs to be recognised, and the need to take into account the full spectrum of activities (e.g. preparing food + washing + dressing). The impact should take into account a range of factors including fatigue as well as delayed fatigue (one symptom of post-exertion symptom exacerbation) as, with people with ME/CFS, the onset may be 48-72 hours or more later.” – #MEAction Scotland

At a few events, participants highlighted the need to avoid using a deficit-based model, and instead use more questions grounded in a social model. This would consider how barriers presented by daily life impact independent living, rather than focusing on limitations due to disabilities. This was felt useful in helping a wider range of people to believe Adult Disability Payment could apply to them and avoid having to think about worst days or perceived personal limitations.

Make changes so it reflects fluctuating conditions

Another prevalent theme, aligned to the above, was for changes to make it easier to describe fluctuating conditions. Points made in these comments included that people are individuals and applications should be considered on a case-by-case basis, that the questions should better reflect daily living and that cumulative and wellbeing impacts should be considered.

No change needed

A few individuals felt the daily living rules did not need to change. One felt the taking nutrition question was “worded most appropriately as it gives clearer examples”.

“I believe changes with the system are not what is needed. Only understanding and patience within the process and the people involved.” – Individual

Transparency over points allocation

Calls for greater transparency in how points were allocated were also made in a few events. It was noted that the descriptors used to allocate points and the reliability criteria are not currently included anywhere in the Adult Disability Payment application form. It was suggested that the descriptors should be included on the application form, or that there should be an option to download them, to help people understand the points system and why they are being asked the questions. In turn, this may enable them to understand what information about their condition and needs is relevant or helpful to include in their application.

Q7B. If you suggested changes, who do you think might be better off?

People with disabilities or eligible people that apply

Half of respondents left an open comment, with several suggesting that the person with a long-term condition or disability would benefit from changes made to the daily living section. Singular suggestions for who may benefit included those just under the threshold for an award currently, those who struggle with paperwork, and “working households who happen to have a disabled family member”.

“Everyone who has just been diagnosed with either an illness or disability. People who become disabled are usually hit very hard financially by the impact of their disability. Also their independence is affected. But the hardest impact is definitely financially.” - Individual

People with specific conditions

Several respondents felt changes to the daily living section would benefit groups with specific conditions, as described above under Q7A.

Myself, or everyone

A perception that changes would benefit everyone or ‘people like me’ was raised by some. Singular comments on why this was the case included that it would give a better understanding of daily challenges faced by applicants, it would improve financial wellbeing and it would better accommodate those whose situations cannot be categorised easily.

People with fluctuating conditions

Some noted changes to the rules for the daily living part of Adult Disability Payment to better capture the changing nature of symptoms would benefit those with fluctuating conditions, though comments were generally brief. One felt it was important for case managers to have better understanding of the highly variable nature of some conditions.

Q7C. If you suggested changes, who do you think might be worse off?

Fewer than half of respondents left an open comment in Q7C.

No-one will be worse off

Several felt no-one would be worse off from suggested changes to the daily living section; this was by far the most prevalent theme. Respondents tended not to give further detail, though singular comments included that further resources or training may be needed to achieve the changes.

People who don’t fit the criteria

Those who would not qualify, or those making fraudulent applications, were considered by some as likely to be worse off from changes to the daily living rules. Again, comments were brief.

People who did not receive an award

A few felt people in certain situations could be worse off. Two were of the view that people whose case managers did not fully understand their fluctuating conditions would be worse off, as they may not be awarded Adult Disability Payment. Other singular comments included those who were dependent on Adult Disability Payment and subsequently found not to qualify or those who had a poor relationship with a GP or consultant.

Reliability Criteria

Q9A. Are the rules around an activity needing to be completed safely, to an acceptable standard and within a reasonable time period easy to understand?

Q9B. If you said “no”, what would you change to make them easier to understand?

Respondents	Yes	No	Don’t know	No answer
No. of respondents (n=84)	26	36	18	4
All respondents (%) (n=84)	31	43	21	5
All answering (%) (n=80)	33	45	23	-

One third (33%) of consultation respondents who answered Q9A felt the reliability criteria are easy to understand. Just under half (45%) felt they were not and one quarter (23%) were unsure. Fewer than half of consultation respondents left an open comment to explain changes they would make to the reliability rules to make them easier to understand.

Further define ‘reasonable time period’

The need to further define ‘reasonable time period’ so it could be more easily understood was recommended by some. Reasons given included that this was a subjective concept which could pose challenges for those who found ambiguity difficult.

Make the reliability criteria clearer

Some left brief general comments that the reliability criteria could be clearer. Singular comments included the criteria being hard to understand, the need to provide definitions for terms used and questions feeling repetitive in the absence of clear explanations. The need for more clarity was also raised at a few engagement events.

Use more examples

Using examples to illustrate conditions and their impact was suggested by some. Similar calls were made at engagement events, such as for improved explanations, case studies people can relate to and more examples of how descriptors apply when someone has a mental health condition or is neurodiverse. Comments included that examples should be specific or given for each daily living activity. #MEAction Scotland called for the use of an example of someone with an energy limiting condition.

The reliability criteria should reflect real life

A few felt changes should be made to enable better, or more consistent, account to be taken of people’s actual lives. This was viewed as necessary as people may interpret the reliability criteria differently, based on their subjective experience:

“What you classify as safe and timely I don’t. Is taking thirty minutes to get to the toilet a safe and timely manner when I end up wetting myself or worse? It takes every ounce of strength I have, to go to the toilet. Yet for an able-bodied person they cannot imagine how wiped out I am after a simple task they can do in 30 seconds.” – Individual

Comments on the reliability criteria at engagement events

While the concept of reliability was noted to be helpful at one event, participants at a few events felt this lacked clarity on the Adult Disability Payment application form. At one event, concern was expressed that if applicants do not understand what is meant by ‘reliably’, they might answer ‘yes’ to one of the activities and move on to the next activity when in fact they may not be able to do the activity reliably and a significant amount of information about their needs and condition could be omitted from their application. This same issue was highlighted by an anonymous organisation in their call for evidence response who had received similar feedback from their stakeholders. This respondent additionally noted that this confusion and lack of information could potentially lead to incorrect awards if the case manager is unable to apply the criteria in all decisions.

At another event, the need to increase applicants’ awareness and understanding of the reliability criteria and the 50% rule before starting the application process was identified, although it was recognised that too much information could overwhelm the applicant. There were suggestions to:

• Reference the 50% rule and reliability criteria on promotional material.
• Explain reliability and the 50% rule in the initial letter to applicants and during any initial phone call with a Social Security Scotland advisor, to help people determine if they should apply.
• Explain at the start of the application form how reliability and the 50% rule are being used to understand people’s condition and the impact it has.

Other suggestions made in events to increase understanding included to:

• Restate the reliability criteria – i.e. safely; to an acceptable standard; repeatedly; and within a reasonable time period” – more often throughout the application form.
• Have boxes next to each activity to describe what is ‘reasonable’ to expect e.g. to not be in more pain.
• Change the wording to ‘reasonable’ to reflect that it is not always possible to be ‘reliable’ due to the weather, lack of aides etc.

The ADP application form

Q12A. How effective do you think the daily living part of the Adult Disability Payment application is at helping Social Security Scotland understand a person’s daily living needs?

Q12B. Please give reasons for your answer.

Respondents	Very Effective	Effective	Somewhat Effective	Not very effective	Not effective at all	No answer
No. of respondents (n=84)	8	15	28	13	11	9
All respondents (%) (n=84)	10	18	33	15	13	11
All answering (%) (n=75)	11	20	37	17	15	-

Two thirds (68%) of those who answered felt the daily living part of the Adult Disability Payment application is effective at helping Social Security Scotland understand a person’s daily living needs; 11% felt it is ‘very effective’, 20% ‘effective’ and 37% ‘somewhat effective’. The remaining third (32%) felt it was not effective.

Overly rigid

Just under two thirds of consultation respondents provided an open comment to Q12B. Of those, the most common theme was that the questions in the daily living part of the Adult Disability Payment application are too rigid to fully capture a person’s daily living needs. Respondents noted that due to the specificity of the questions or the tick-box nature of the application, they felt not all details about activities were gathered.

“Again, it is the 1-size-fits-all approach. I can make a cup of tea. I cannot remember when or where I put it. But that does not matter. The box is ticked.” - Individual

Another individual thought it was important to emphasise the form was not asking about the type of condition or disability a person has, but rather how it impacts their life.

“Forms to be more detailed, explain that it’s not what conditions you have, but how it impacts on daily living and mobility. Simplified questions that explain the qualifying criteria.” - Individual

Effective

Some shared that they felt the daily living part of the application effectively captured their experiences. These respondents noted that the application covers a range of day-to-day activities and gives space to allow people to explain their situation. The prompts were also mentioned as useful by a few.

“Plenty room to explain your situation and good prompts on the application form to remind you of things that may be relevant that you’d otherwise maybe have forgotten to mention. People with mental health issues especially can experience brain fog/confusion/overwhelm so prompts are really helpful.” - Individual

Not reflective of certain conditions

A small number thought that this aspect of the application was geared more toward people with physical disabilities and that more consideration should be given to those with fluctuating, mental health, or neurological conditions. They did not provide any further detail as to why or how.

Does not capture all the information

A few thought this section of the application was not effective in capturing their lived experiences. For example, two respondents suggested that it include space to explain the impact completing the activities had on wellbeing and energy levels. Another two thought that the application should acknowledge the difficulty some may feel in speaking about their conditions, particularly those who were newly diagnosed.

“Also, people who have a disability or illness can and do have severe anxiety or distress in a social situation, and some do feel embarrassed by their condition. A one [size] fits all unfortunately is too often the standard when it is far from that.” - Individual

Challenges associated with a deficit-based model or people not recognising or disclosing their difficulties was raised at multiple events. Participants highlighted that people may find it difficult to think about their ‘worst day’ or open up about their difficulties. They may have developed coping strategies which means they do not always perceive themselves as having a disability, or may interpret the questions differently than others due to the ambiguity of the questions. One example given was of people reporting that they can cook a simple meal, when in fact they need support to do this safely or are unable to prepare a nutritional meal. Another example is that an applicant may answer that they leave home when they only do this twice a year to visit their GP. The particular challenge for people with fluctuating conditions to recognise or convey their support needs was mentioned in a few events, given that their ability to do things might vary at different points in time.

Comments on the application form at engagement events

While the consultation included Q12A/B above which specifically explored the daily living part of the Adult Disability Payment application form, the form was one of the four main areas of focus at the engagement events. To ensure the themes raised and discussed at events are described fully, these have been presented separately in the following section.

Perceptions of the physically and emotionally demanding nature of making an Adult Disability Payment application, and the importance of people being supported to manage the process and to complete the form well, were mentioned in all events. The main points of these discussions are summarised below.

Emotional considerations

When considering the emotional impact of applying, event participants highlighted that they or the people they support reported feeling uncomfortable, distressed, overwhelmed or embarrassed. It was noted that, because the questions lead people to consider their limitations, it can be challenging for an applicant to face what they cannot do, or how their life has changed. For example, people with mental health conditions were identified at one event as being at risk of finding the application process stressful, or that being asked the questions could trigger paranoia. Participants also highlighted how they need to be careful when asking questions of applicants when supporting them to complete the form.

Related to this, a small number of consultation respondents suggested that assistance be given to people who find speaking about their conditions difficult or who have had previous negative experiences with their conditions being dismissed. Two specifically mentioned challenges with GPs and medical professionals accurately understanding their lived realities, which made them more worried about their Adult Disability Payment application.

Length of the application form

The application form and process were described by event participants as daunting, exhausting, long and difficult. The specific impact on people whose conditions mean they experience difficulties with concentration, brain fog or fatigue was highlighted, with concern expressed this may lead people to “give any answer just to get the process over and done with”. Concerns were also raised about those whose first language is not English due to translators needing to understand nuances and jargon. It was suggested that the application form explicitly encourage people to draw on the support of family members, professionals or advocates when completing the form to make sure they are representing themselves effectively. There were also suggestions to increase the support available to people during the application process such as:

• Providing opportunities to have a conversation with someone instead of filling in a form, or to establishing a specialist team within Social Security Scotland offering face-to-face appointments to take away the stress linked to form filling.
• Increasing resources to, and availability of, community support services to enable them to offer more assistance to those applying.

The strengths of the form, such as the value of free text questions and space for elaboration at the end, the straightforward layout and sensible grouping of questions were noted in a few events. However, improvements to the application form were suggested in multiple events. These included, in no particular order:

• Including more open questions and space for free text responses throughout.
• Multiple choice questions for those who struggle with handwriting.
• Improvements to colour contrasts on the paper version to increase accessibility for those with visual impairments.
• Reviewing the use of language through a neurodiversity lens to support understanding of the questions.
• Providing different versions of the form, for instance a condensed version without photos specifically for support organisations so that it is easier to navigate.
• Less high-quality paper and binding to make this easier to fit into an envelope to return along with supporting documents.
• Making it easier to un-staple and copy the forms, as the booklet format means support organisation staff spend significant amounts of time scanning individual pages so they can be saved on their organisation’s client databases.

At a few events there were mixed views about whether to shorten the application form by, for example, removing or having pictures in a separate document. However, the pictures and easy read information were recognised as being beneficial for supporting people’s understanding and breaking up dense text, making the form more accessible for people with concentration difficulties or a learning disability. Concern was expressed about having to navigate two forms and that separating the pictures into a different document would exclude some people.

Paper vs online applications

The advantages and disadvantages of both paper and digital application options were discussed at a few events, typically concluding that it was helpful to have both to meet different needs. One consultation response suggested a responsive online form that takes answers into consideration and provides relevant follow up questions.

Challenges with digital and IT applications were raised in a few events, however. There were reports of technical issues with the submission portal and problems uploading online applications due to file size, with advisors having to scan these in two or three parts or reduce image quality. There were reports of fewer open text questions on the online form, compared to the paper form. It was highlighted that people can often forget their Government Gateway logins and passwords. There was also concern at one event that online applicants do not automatically get a copy of their application and may struggle to remember their responses if needed for a re-determination. There was acknowledgement that Social Security Scotland sends a copy if requested, but some felt this should be automatic or there should be a button online to request a copy. There was also a call to have audio-visual features on the online form to support people who are visually impaired.

Other considerations

Q13A. Are there any other issues with the daily living part of the Adult Disability Payment application that have not been captured above?

Respondents	Yes	No	Don’t know	No answer
No. of respondents (n=84)	24	19	28	13
All respondents (%) (n=84)	29	23	33	15
All answering (%) (n=71)	34	27	39	-

One third (34%) of those who answered indicated that there are other issues with the daily living part of the application. However, two fifths (39%) were unsure.

Q13B. If you said “yes”, what other issues with the daily living activities do you think need to be considered?

Q13C. Are there any other things you would like to tell us about the daily living part of Adult Disability Payment?

In line with the results of the closed question, just over a quarter of consultation respondents provided further considerations at Q13B. In addition, just over one quarter commented at Q13C. In most instances the points raised aligned with themes already covered earlier in this chapter and have been included under the most relevant question. The below therefore presents other themes arising here and throughout this chapter about Social Security Scotland staff training, other views on the Social Security Scotland workforce and comments about the wider decision-making process.

Social Security Scotland staff training

The most prevalent theme in responses to Q13C, mentioned by a few respondents, was that staff need more training to better understand certain conditions and the impact they have on people’s lives, therefore ensuring effective decision-making. This point was reiterated throughout the consultation and engagement events.

Specifically in relation to the daily living activities, respondents noted that any changes made to the daily living part of the Adult Disability Payment application needed to be reflected in the medical literacy of case managers who review the applications. Similarly, a few respondents at Q7A highlighted the need to ensure staff have a detailed understanding of different conditions and how they impact people, or are using active listening skills. Two respondents noted concerns that case managers are not reading or understanding their supporting information from medical professionals.

“Only that the decision-makers seem to be the issue, not the application itself. I don’t know if the decision-makers are production oriented or quality oriented. It needs to be kept in mind that they are making life-changing decisions that affect real people” - Individual

Wider contact with staff during the application process was described positively in a few engagement events. However, challenges and suggestions for improvements were also raised. Levels of knowledge and training across Social Security Scotland were felt to be inconsistent. There was a suggestion that Social Security Scotland case managers and those in client facing roles have more condition specific training to hear about new conditions, which could prevent clients having to repeatedly explain their condition or symptoms. An example was given of an individual receiving six calls with six different practitioners for one application and having to repeat the same information to each one.

One event participant expressed a view that fewer Adult Disability Payment applications were being awarded as Social Security Scotland staff gained more experience. This meant their organisation was having to support more re-determinations than had previously been the case. They called for improved training and institutional knowledge to help minimise inconsistencies in decision-making.

Comments about Social Security Scotland workforce at engagement events

A range of other comments about Social Security Scotland staff, not necessarily related to training, were noted across engagement events. These have been summarised below.

There was a call for better collaboration and communication between Social Security Scotland staff and other professionals. This includes them having a known point of contact in Social Security Scotland to resolve issues, clearer internal escalation routes, greater recognition of implicit consent built into the advisor relationship, and an improved process for third-party organisations to send in their consent mandate. For example, one organisation ticked the box for mandate for one year, but after the application took longer they could no longer speak to Social Security Scotland; while this highlighted the need to request a five-year mandate, they called for greater flexibility.

A few others also suggested that the workforce and the resourcing to handle Adult Disability Payment administration should be increased to positively impact processing times and allow case managers to thoroughly read and respond to applications. An organisational participant at one event noted that a single telephone line for all services made it difficult to get through to the necessary services. They acknowledged the simplicity and accessibility of a single number for all queries, but practically that meant long wait times and confusion for those calling. Another noted that there were no easily accessible escalation routes for queries or clear referral pathways. While another acknowledged they do exist, they felt these would be very difficult for individual applicants to use. It was also felt that the system should recognise some people experience difficulties using the phone or speaking to people.

A few event participants noted that paper forms have sometimes gone missing even though their organisation has a record of postage or where a Social Security Scotland advisor has previously referenced having the documentation.

Wider decision-making process

The second most prevalent theme in response to Q6C – how could the rules around the daily living part be made easier to understand? – was that some respondents called for wider changes to the decision-making process beyond considering daily living.

Suggestions included using Occupational Therapists more effectively to assess peoples needs, to “overhaul” or “scrap” the rules, to integrate Adult Disability Payment with NHS systems so “doctors and consultants treating the patient are the decision-makers” and to treat private medical supporting information the same as public-sector supporting information.

In response to Q13C, few individuals left mixed comments on using points to determine awards. One organisation noted:

“Overall, the ALLIANCE are not convinced that a points and deficits based model of assessing a person’s daily living needs is the best approach to determining eligibility for disability payments. As such, we would encourage the review to consider alternatives to the current points based system for determining eligibility for ADP. Whilst a points based system may be easy to administer, it does not necessarily sit well with a human rights based approach to social security or with the provision of adequate support. Whether fairly or not, people may perceive a points based system to be rooted primarily in controlling costs for the government, rather than ensuring the right support is given to disabled people. In particular, there is potential for serious psychological distress where individuals fall only marginally short of a required number of points, risking giving the sense that they are “disabled, but not disabled enough” to justify support.” – Health and Social Care Alliance Scotland

Alternative ways of assessing daily living needs were suggested at a few events. These included:

• More of a clinical decision-making process to avoid situations where people request a re-determination or appeal because they are one point away from an Adult Disability Payment award.
• Removing the need to apply, or alternatively fast-tracking or simplifying applications for those with certain conditions such as loss of sight and hearing, amputation, MS, autism, and other conditions that are progressive or will not improve, in the same way as for those with terminal conditions.
• Social Security Scotland being more proactive in the first stage of the application at understanding whether a person is eligible and giving certain conditions a shorter form or a different way of applying.
• Basing Adult Disability Payment upon Disability Living Allowance using a qualitative approach drawing on the social care assessment of England and Wales and their 9 wellbeing points.