Adult Disability Payment: consultation analysis

Eligibility and Entitlement

Daily Living Component and Mobility Component

Regulations 4 and 5 set out the Daily Living Component and Mobility Component, and outline individuals' eligibility and entitlement to the standard and enhanced rates.

Around three quarters (76%) of the respondents that provided an answer agreed that the regulations related to the Daily Living Component and Mobility Component reflected the policy intent.

	Number of Respondents	% of Respondents	Valid %
Yes	74	59%	76%
No	12	9%	12%
Don't know	12	9%	12%
Missing	29	23%	-
Total	127	100%	100%

It should be noted that many comments made in response to this question related to the detail contained in Schedule 1, or were more relevant to other parts of the consultation. These comments are therefore presented elsewhere in the report, as appropriate. Also, many of the remaining respondents provided unique responses which were not repeated by others, making it difficult to identify a range of key themes and issues at this question. Typically, individuals discussed their personal circumstances and experiences under the Personal Independence Payment system, or outlined their preferences for how specific elements of the system should operate, rather than commenting on the regulations specifically.

Several respondents highlighted issues and problematic elements of Personal Independence Payment and associated assessments. While a few respondents appreciated the need for a smooth transition between reserved and devolved benefits, there was concern that this meant many of the issues related to eligibility would be transferred to the new system, and therefore would not represent a significant improvement:

"…the principles set out in Part 1 of the Social Security (Scotland) Act include that 'respect for the dignity of individuals is to be at the heart of the Scottish social security system'. We are concerned that ADP [Adult Disability Payment] continuing the current model of PIP [Personal Independence Payment], albeit with the proposed modifications, will not do enough to ensure the dignity of disabled people in Scotland." (Organisation Representing Adults with Lived Experience)

"It is still a concern that the use of PIP [Personal Independence Payment] framework is being used despite the clear feedback that it violates dignity and compassion." (Individual)

As above, several respondents felt that the eligibility criteria were too narrow in their scope, both in terms of the daily activities covered, and because they did not adequately reflect the impact of certain conditions and the needs of such applicants.

Perhaps the main area of discontent was with the '20 metre rule', i.e. the distance in metres an individual can walk to determine eligibility for the mobility component of Personal Independence Payment. Some respondents suggested that this should be reconsidered or removed to make the eligibility criteria fairer and more inclusive:

"The 20-metre rule is an arbitrary distance measure that fails to recognise and capture fluctuation and hidden symptoms… Retaining the 20-metre rule contradicts the commitment to create a system that is underpinned by dignity, respect and a human rights-based approach." (Disabled People's Organisation)

More specifically, several individuals and organisations wanted to see the 20 metre mobility measure/walking test increased to 50 metres, in line with the previous Disability Living Allowance criteria. Others suggested that the 20 metre measure was a significant barrier for those with neurological conditions, mental health issues, learning disabilities, and fluctuating conditions:

"The retention of the 20 metre rule will have a substantial impact on disabled people with variable or fluctuating conditions - such as epilepsy or MS [Muscular Sclerosis]." (Disabled People's Organisation)

"For fair and inclusive support, the arbitrary mobility measurement of 20m must be removed from all criteria. The international, generally accepted standard of mobility impairment is measured at inability to walk 50m unaided or without pain. Scotland's new disability support must meet the same standards." (Individual)

The second main area of disagreement was with the '50% rule' (i.e. that an individual must be impacted by their condition on at least half the days in every month to qualify for Adult Disability Payment). A few organisations, stressed that they viewed this as inflexible. Instead, they supported a 'social model approach' to the impact of variable conditions on daily life rather than the medical/functional approach which was adopted under Personal Independence Payment and which was being proposed under Adult Disability Payment.

A few also sought clarity over how the impact of undertaking activities would be taken into account.

Ultimately, most respondents wanted a clear, easily understood and transparent system, which would not cause stress and anxiety to applicants. They also sought reassurance that no one would suffer a loss of eligibility as a result of the change-over from Personal Independence Payment to Adult Disability Payment.

Determination of Ability to Carry Out Activities

Regulation 6 explains that the determination about a person's ability to carry out daily living or mobility activities will be considered with reference to any aid or appliance that the person could reasonably be expected to wear or use, regardless of whether they actually do or not. It also states that a person can carry out an activity if they can do so safely, to an acceptable standard, repeatedly, and within a reasonable time period. Regulations 7, 8 and 9 set out the scoring criteria for the determination (including scoring for daily living activities, mobility activities and further provisions). A series of descriptors relating to the distance in metres an individual can walk determine eligibility for the mobility component of the payment, with the enhanced rate provided to clients who are unable to walk more than 20 metres. The proportion of time during which an individual satisfies a descriptor must amount to 50% of the days in a month. Adult Disability Payment will consist of a daily living component and a mobility component and a person may be entitled to either component or both.

Over half (58%) of those respondents that provided an answer agreed that these regulations reflected the policy intent.

	Number of Respondents	% of Respondents	Valid %
Yes	59	46%	58%
No	23	18%	22%
Don't know	20	16%	20%
Missing	25	20%	-
Total	127	100%	100%

The main issue to generate qualitative comments at this question was the 50% rule, which respondents argued should be amended from the outset of Adult Disability Payment. Some felt this would not accurately take account of the nature or true impact of living with some conditions, for example epilepsy, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME), Multiple Sclerosis, Rheumatoid Arthritis, neurological conditions, mental health conditions and other conditions which fluctuate in their occurrence and/or severity. It was noted that not all conditions have the same impacts day-to-day, and for others, environmental issues, such as the weather or amount of light available, can impact on their condition:

"Those who suffer less than 50% of the time should be included. This is extremely harsh and will leave many vulnerable people at risk." (Individual)

Similarly, it was noted that, while the physical or mental effects of some conditions may not impact applicants 100% of the time, they were unpredictable, and so individuals had to live with the risk, medication and lifestyle/social restrictions imposed by such conditions every day. As such, it was felt that the 50% rule might not be flexible enough to recognise and provide entitlement to people with variable conditions, but rather a broader and more holistic analysis of the applicant's circumstances would be required:

"[Our members] are concerned by the decision to retain the 50% rule... The rule is particularly concerning for disabled people with fluctuating conditions where it is difficult to predict when their condition will impact them. For example, if a person has a condition which affects them differently hour by hour over the day, day by day over the week, and week by week over the year, it may not be practicable to calculate the total number of hours in relation to each descriptor." (Disabled People's Organisation)

A few were also concerned that the use of strategies and aids should not be used as barriers to eligibility or incur penalties in the points-based system. It was felt that the regulations had failed to take account of unpredictable and variable conditions, and that these applicants would require the use of aids and/or support at all times and not just when the condition presented. Similarly, it was suggested that an individual's ability to carry out an activity should not be based on the individual's ability whilst wearing or using any aid or appliance which the individual normally wears or uses (since this may be discriminatory).

More specifically, for those with visual impairments, it was highlighted that assistive technology should be considered as supporting individuals to maintain a level of independence rather than penalising them for such use, and that considerations which determine mobility based on specific journeys using a cane, taxi or guide dog were unfair as they would face many other challenges and costs in other circumstances/environments/journeys:

"Use of strategies and aids to make an individual's environment safer and to manage their condition to an acceptable standard should not lead to them being penalised by being incorrectly deemed as not being at risk." (Disabled People's Organisation)

Other minority concerns discussed by just a few respondents each included that:

• terms such as 'minimal or fleeting' would need to be closely defined in order to avoid subjective determinations being made and to avoid ambiguity for applicants with variable conditions;
• some applicants find the reliability criteria to be confusing and unclear and so there was a need to make these easier to understand and more transparent. It was also felt that these needed to be made more inclusive and holistic;
• being able to conduct tasks 'safely' needed to take into account wider implications than just pain. For example, it was suggested that fatigue and other impacts could be felt as a result of undertaking a task and this needed to be recognised;
• being able to undertake a task 'to an acceptable standard', 'repeatedly', and 'within a reasonable time period' were again subjective. It was felt that these terms or measurements needed to be clarified, and perhaps be made in comparison to either what the applicant was able to do before they developed their condition, or in comparison to someone with no physical or mental health conditions; and
• in relation to undertaking a task 'safely, 'to an acceptable standard', 'repeatedly', and 'within a reasonable time period', as well as the section on 'Moving Around', it was suggested that these needed to be amended to be applicable for those with fluctuating conditions and mental health conditions so they take account of more than physical capability.

A few also suggested that this element of Adult Disability Payment felt very similar to the criteria, determinations and scoring used for the Personal Independence Payment, which were considered stressful for applicants and inappropriate for a number of different conditions as it relied on a 'medical model of disability'. It was felt that this was a missed opportunity to improve the system for the future:

"This sounds a lot like the degrading sort of tests required by the PIP [Personal Independence Payment] application assessments." (Individual)

The Qualifying Period Conditions

Regulations 10-13 define the required period condition which must be satisfied to be eligible for each of the components of Adult Disability Payment. This includes outlining the relevant time period before and after the 'relevant date', which is typically the date of the application.

Around three quarters (74%) of respondents who provided an answer at the closed element of this question agreed that that these regulations met the policy aim.

	Number of Respondents	% of Respondents	Valid %
Yes	72	57%	74%
No	12	9%	12%
Don't know	14	11%	14%
Missing	29	23%	-
Total	127	100%	100%

For this question, a few respondents provided comments in support of the regulations, indicating that these mirrored the Personal Independence Payment system, and therefore provided transparency. It was also felt that the regulations would assist those whose condition improved then relapsed.

Respondents' main concern was that the 13 week period to be considered before the relevant date was not suitable for applicants with unpredictable and fluctuating conditions. It was felt that this time period may not represent the full impact or severity of their conditions. This was seen as particularly unsuitable for those newly diagnosed with epilepsy, where the frequency of seizures may be limited, but the impact on the individual's life would be significant and immediate. It was also argued that the fluctuating effects of mental health conditions were not well suited to this timescale measure. As such, it was felt that this 'blanket policy' should not apply to all conditions.

Some also felt that 13 weeks was too long for applicants to be made to wait, particularly those with severe and permanent disabilities/conditions, those that may incur significant costs over this time period as a result of their condition, and for conditions that can appear suddenly and have a dramatic impact on daily life (such as strokes and mental health problems). It was argued that the 13 week qualifying criteria should be removed with applicants eligible as soon as they become disabled. In addition, one organisation suggested that the qualifying criteria should only require that someone would be expected to have the condition for at least nine months, whilst another argued that the benefit should be backdated to when the person became disabled:

"If a person gets a condition or becomes disabled, why do they have to wait 13 weeks in every case, for some cases it will be very clear that the person will be entitled from day one, such as losing both legs in a car accident." (Individual)

A few were also uncertain of the inclusion of the 39 weeks post-application. One felt that it would be difficult for some applicants to foresee how/when their condition may occur or impact them over this future timescale. Another felt that those with shorter-term issues should also be eligible during their period of disability and recovery, or that this timescale could exclude eligibility for those expected to recover within this time period but who subsequently require longer. It was suggested that awards should be made based on the impact of a condition on the individual rather than timescale or number of instances within a set time period.

Residence and Presence Conditions

Regulations 14-21 set out the residence and presence requirements that must be satisfied for eligibility, along with the circumstances where exceptions would be made. Regulation 18 specifically covers further provision for serving members of Her Majesty's forces and their family members (although no specific feedback was received on this regulation).

Over three quarters (79%) of those who answered the question agreed that these regulations met the policy intent.

	Number of Respondents	% of Respondents	Valid %
Yes	72	57%	79%
No	9	7%	10%
Don't know	10	8%	11%
Missing	36	28%	-
Total	127	100%	100%

Several respondents provided supportive comments, suggesting that the regulations would ensure the system was 'fair', would help stop fraud, provided flexibility to allow disabled applicants to take holidays, and provided key exemptions to the 'past presence test' for certain groups of applicants (such as for people with terminal illness, people awarded refugee status, and where someone can 'demonstrate a genuine and sufficient link to Scotland').

The main area which respondents commented on was the 'past presence test', i.e. which requires the individual to have been resident in Great Britain for 104 weeks in the last 156 weeks. Seven organisations, representing a broad range of interests, suggested that this be removed as it may be discriminatory and unfairly exclude some individuals. For example, concerns were raised over the impacts this would have on refugees, asylum seekers and other immigrants granted Discretionary Leave to Remain; those subject to immigration control who would have no recourse to public funds; international students; Scottish citizens returning from living abroad; those with dual nationalities; and newly resident disabled people. It was also suggested that those impacted by COVID-19 travel restrictions could be negatively impacted:

"…the test should be removed as it represents an unnecessary barrier to newly resident disabled people in Scotland accessing essential social security support." (Third Sector Organisation)

Respondents were unclear as to the purpose of requiring the individual to have been in Great Britain for 104 weeks in the last 156 weeks. Among the seven organisations that suggested it be removed, it was argued that the test was incompatible with the principles of dignity, fairness and respect; was inconsistent with eligibility criteria for other Scottish social security benefits; went against the principal that social security was a human right; and that such a rule had proven to be untenable in relation to the Human Rights Act 1998 for child applicants, and so would have a similar impact on adults:

"This unduly restricts people's rights to social security, and is inconsistent with other Scottish social security payments, which do not include this restriction. There does not appear to be any practical reason for this rule to be included." (Third Sector Organisation)

Rather, it was suggested that this aspect should be dropped and that no qualifying period for eligibility be required. A few suggested shorter time periods would be preferrable, with residency of 26 weeks (or six months) in the past 52 would be more acceptable. Alternatively, one organisation suggested that the 'habitual residence test' would provide a suitable alternative. It was felt that this would be sufficient to ensure that only those who have made their home in the UK would be entitled to apply, and exclude those who were only in the country temporarily.

Entitlement Under Special Rules Relating to Age

Regulations 22-25 set out information in relation to eligibility and entitlement linked to age. Over three quarters (78%) of respondents that provided a response agreed that the regulations, as written, were clear and reflected the policy intent in this regard.

	Number of Respondents	% of Respondents	Valid %
Yes	72	57%	78%
No	8	6%	9%
Don't know	12	9%	13%
Missing	35	28%	-
Total	127	100%	100%

Among those who offered support, it was felt that the regulations were straightforward and would help adult applicants. The move to starting eligibility at age 16 was seen as sensible as it linked with guardianship/transition, as well as provided flexibility and choice for young people aged 16-18 where they could choose to remain on Child Disability Payment. Bringing the upper age limit in line with state pension age was also welcomed by some, while the ability to retain entitlement to the mobility component beyond state retirement was seen as a helpful safeguard against financial hardship:

"We welcome the proposal for people of retirement age to retain their entitlement to the Mobility Component of Adult Disability Payment. This will safeguard clients from a gap in support or loss of income at the point of retirement." (Disabled People's Organisation)

The main concerns were linked to the upper age limit. There was some misunderstanding that the regulations meant that Adult Disability Payment would cease when an applicant reached retirement age, that those who became disabled after retirement age would not be eligible for support, or that those whose mobility worsened as a result of an existing degenerative condition would not be eligible for an uplift in their entitlement. Such misunderstanding may indicate a need for greater clarity of communications in this regard.

Further, it was suggested that, if applicants were expected to move to another benefit on retirement, this needed to be made clearer within the regulations:

"A disabled person should be entitled to the same level of financial support received prior to reaching State Pension Age, as after, or a transfer to another benefit without financial loss." (Individual)

"People may become disabled after reaching pension age, what protection is in place for them?" (Individual)

"In our view, it is discriminatory not to provide mobility support when an individual's mobility has deteriorated after they have reached state pension age." (Disabled People's Organisation)

Similarly, one respondent questioned whether the age based regulations would result in financial penalties for disabled people who chose to continue working beyond retirement age.

The system for progression from Child Disability Payment to Adult Disability Payment was also discussed by a few respondents. One suggested that a smooth transition system would be needed, while another felt that this should be an automatic transition in order to avoid stress and support the pursuit of higher/further education (or that the age of transition should be raised to 21 to avoid any impact on education). For young people living with a mental health condition, a suggestion was made that the Scottish Government should mitigate the potentially traumatic and stigmatising effects of transferring from Disability Living Allowance or Child Disability Payment to Adult Disability Payment at 16. To achieve this, it was suggested that either a single Disability Payment system for children and adults should be offered or that individuals should be allowed to decide the point at which they transfer their award within a longer time-frame (for example, between the ages of 16 and 21).

Again, a few respondents felt the regulations simply matched the existing system, which was not seen as a positive step. Similarly, several respondents had found this section and the eligibility criteria confusing, with a few noting it had been difficult to understand and contained too much jargon.

Entitlement Under Special Rules Related to Terminal Illness

Regulation 26 outlines eligibility and entitlement criteria for applicants who are terminally ill and whose entitlement to Adult Disability Payment is still to be determined. It also outlines the requirements for the daily living and mobility component criteria that are dis-applied in such circumstances.

Of those who provided a response to the closed question, most (89%) agreed that the regulations reflected the policy intent.

	Number of Respondents	% of Respondents	Valid %
Yes	83	65%	89%
No	2	2%	2%
Don't know	8	6%	9%
Missing	34	27%	-
Total	127	100%	100%

This was the most supported regulation and several supportive comments were made in relation to the regulations for terminal illness. In particular, these regulations were considered to be 'straightforward', 'easy to understand', 'reasonable' and 'welcomed'. It was felt they would create a smoother process for people with a terminal illness, remove ongoing uncertainty in relation to eligibility, would provide greater dignity for applicants, and create an 'improved and fairer system':

"This is a very positive and well needed change from the current system." (Disabled People's Organisation)

Specific areas of this regulation which were welcomed included:

• the revision/extension of the definition of 'terminal illness' to reflect clinical judgement rather than life expectancy/the removal of the six month time-limit for life expectancy;
• the consideration of replacing 'terminal illness' with 'life limiting condition' as this was felt to be more inclusive and would be consistent with terminology used within palliative care settings in Scotland;
• the use of healthcare professionals' own clinical judgement in determining eligibility and supporting a 'fast-track' application, and the extension of the definition of 'appropriate healthcare professional to include registered nurses;
• the 26 week 'backdating' of awards and the decision to pay both components at the higher rate without the need for any consultation; and
• there being no need for further clinical judgement when an applicant transitions from Child Disability Payment to Adult Disability Payment.

The only common concern, noted by a few respondents, was that the regulations made no reference to awards for those with terminal illnesses being life-long awards. It was felt this needed to be amended before the regulations were finalised so that life-long awards with no reviews were standard practice for such applicants. Similarly, it was suggested that the regulations should more explicitly and clearly reference the Chief Medical Officer's guidance on terminal illness.

Other specific areas for concern, clarification or issues for further consideration, as noted by one respondent each, included:

• that legislation or regulations were needed to define 'terminal illness' in order to 'future-proof' Adult Disability Payment and protect the definition from future changes, and ultimately ensuring continuity for applicants;
• the need to put measures in place to avoid delays in the application and consultation process for terminally ill adults;
• disappointment that the 'backdating' of Adult Disability Payment would not be available where a patient had been symptomatic prior to confirmation of diagnosis/prognosis; and
• the potential to consider increasing the 28 day protection of Adult Disability Payment before, during and after residing in any facility like a hospital or hospice.