Feedback in relation to Schedule 1
Schedule 1 provides tables detailing the activities, descriptors and scores to be allocated for each of the Daily Living Activities and Mobility Activities for Adult Disability Payment. These were drawn from the activities and scores allocated for Personal Independence Payment, but contain changes to reflect significant developments in case law which affected how the criteria was applied for Personal Independence Payment.
A few respondents provided positive/supportive comments in relation to Schedule 1. They welcomed that the descriptors had been updated to reflect case law, or welcomed specific changes that had been made, e.g. that the mobility descriptor 'Planning and following journeys' would take into account the presence of another person.
While the information in Schedule 1 was 'as expected' for some respondents, the fact that this matched or was closely aligned to descriptors and scoring used for the Personal Independence Payment system was not always welcomed. Indeed, a few respondents expressed disappointment that the Personal Independence Payment descriptors had been retained and felt that nothing had really changed:
"Nothing has really changed for the better here at all. Variable conditions are being nodded at, but not really understood or accommodated." (Individual)
"That there are no significant changes to the activities, descriptors and supporting eligibility criteria was felt to be a missed opportunity to significantly improve the support provided to disabled people." (Disabled People's Organisation)
In particular, there was disagreement with the application of the 50% rule and 20 metre walking test (consistent with earlier questions). The 20 metre walking rule was also said to lack any foundation and was argued to be a largely discredited measure. As such, there was disappointment that this would be retained by the Scottish Government. Concern was also raised that some of the justifications given for not changing this rule in the draft regulations may simply be repeated again during the proposed review, thus constraining the opportunity for any radical change in approach in the future:
"[We] disagree with the application of the 50% rule and 20 metre walking test. Though disabled people understand the need for a safe and secure transition they also believe that these rules unfairly penalise disabled people and deprive them of benefits to which they should be entitled." (Disabled People's Organisation)
"We are genuinely surprised that the 20 metre rule has been retained despite widespread awareness of its adverse impacts on disabled benefit claimants, and for example this was not increased to the 50 metres that exists within DLA [Disability Living Allowance] and ESA [Employment and Support Allowance]." (Third Sector Organisation)
One organisation also argued that it was difficult for applicants to focus on tasks they could not do, and to try to quantify the impact of their condition. A common theme throughout the consultation responses was that this had a negative impact on individuals' mental health:
"Many of our members commented upon the difficulties of trying to assess and quantify the impact of their condition or impairment on their ability to carry out daily living activities when this can be unpredictable, variable and when to focus on "your worst days" is so dispiriting." (Disabled People's Organisation)
It was suggested that the descriptors (both for daily living and mobility) were not flexible enough for different people and different conditions. In particular, it was felt that there was a lack of recognition for some conditions, and that the descriptors generally did not fit well with some conditions, e.g. Muscular Sclerosis, epilepsy, and other fluctuating conditions; autism; hidden disabilities; sensory impairments (other than sight and hearing loss); learning disabilities; and mental health conditions. It was suggested that the descriptors and scoring needed to be revised to take account of these conditions, or that a more flexible and person-centred approach needed to be taken:
"The scoring system does not work, each case should be individually looked at, not determined by a "general" scoring criteria." (Individual)
The mobility descriptors were flagged as being particularly unfair for people with mental health conditions, with respondents often focusing on the "Planning and Following a Journey". There was concern that the criteria for going out/making journeys explicitly excluded impacts arising from psychological difficulties. It was noted that, while some applicants could manage some journeys, others would be impossible or would generate negative effects, such as panic attacks, feeling trapped, low motivation, etc. It was expressed that those experiencing difficulties with mobility due to mental health issues may score unfairly low compared to those with physical disabilities, based on the draft version of Schedule 1.
Some respondents believed there were still gaps in the draft legislation and that they had not fully taken account of recent case law. The main issue discussed by several respondents related to the use of the term "for reasons other than psychological distress" at Mobility Activity 1, Descriptors c, d and f. It was noted that this was the same wording used in an attempted amendment to Personal Independence Payment mobility regulations, but which was subsequently declared unlawful and discriminatory as it treated people with mental health problems less favourably than people with physical health problems. It was stressed that the wording needed to be changed to reflect this.
Many other areas were also identified, some as requiring further consideration and others which were considered not to meet current case law (see Appendix A).
In addition, several respondents raised more general concerns, including:
- the scoring of some aspects, and in particular that only one point was awarded for needing assistance to take or manage medication. It was noted that this was more restrictive than Personal Independence Payment;
- the impact on variable conditions needed to be further considered and incorporated - including that undertaking the activities may be possible but the wider impact on the person needed to be considered;
- that there was not sufficient description provided for what each part meant;
- that often the reliability test was ignored in assessments and scoring under the Department for Work and Pensions system; and
- there was a need for the system to allow for updates and changes in conditions.
Again, a few respondents discussed difficulty in accessing Schedule 1. A few noted that they had been unable to find it as part of the consultation, while one had found it very difficult to understand:
"I'm disabled and completing this on my own and I found this quite difficult to understand and required a lot of re-reading, because it was not provided with adequate descriptor appendix." (Individual)
Feedback in relation to Schedule 2
Schedule 2 defines the persons who are excluded from the definition of Members of Her Majesty's forces, for the purposes of the regulations.
While a few respondents agreed that these exclusions were straightforward and fair, a few others felt there should be no exclusions, and that eligibility should be based purely on a person's condition or disability:
"If a citizen, regardless of job, is in a situation where they have a need for disability it should be awarded." (Individual)
Other comments made by one respondent each included:
- a preference that payments for current and former armed forces personnel should not be less than they would receive if they were civilians;
- a query over whether there was capacity for an individual who has been denied assistance from Her Majesty's Armed Forces health and disability care provision to then be able to apply to Adult Disability Payment; and
- agreement that relatives of serving members of Her Majesty's Forces should be able to apply.
Comments were made elsewhere in the consultation that there needed to be more clarity about the transfer from legacy benefits to Adult Disability Payment within the regulations (including, for example, Armed Forces Compensation Scheme (AFCS), the War Disablement Pension Scheme (WPS) associated allowances, War Pensioners' Mobility Supplement (WPMS) and Constant Attendance Allowance (CAA)).
In order to address any emerging concerns with the existing framework, a substantial independent review of Adult Disability Payment is intended, a year after it is rolled out nationwide. Details of the review were included in the consultation and views on it were sought.
Many who provided a response to this question welcomed the idea of a review in principle and supported its aims to improve and enhance the benefit to maximise effectiveness, impact and reach. Several also welcomed that the independent report and recommendations from the review would be available for public scrutiny. This would help to build trust in the system, it was felt. Similarly, event participants welcomed the proposal to undertake the review, which it was stated was also recommended in the Scottish Campaign on Rights to Social Security published in 2020.
While broadly supported, views were put forward that the review may be timed too distantly in the future, and should be carried out either before implementation or as soon as possible, and be done at a pace:
"We welcome the proposed review of Adult Disability Payment and believe this will be an essential component of the transition process and will ensure Scotland's social security system upholds the vision of dignity, fairness and respect. However, we feel it necessary to recommend that this must be done at pace. We recommend a schedule be published, outlining a 12-month period whereby the review is conducted, recommendations are made, and changes start to be implemented. This must be done at in a timely manner to ensure the scars of DWP [the Department for Work and Pensions] are not further deepened." (Disabled People's Organisation)
One respondent suggested a rolling review rather than a single review which takes place after 12 months (which they felt was too long after implementation), and another suggested that the review could be run in parallel with the rollout. A more general comment was made that there should be robust and clear mechanisms for feedback once the new payment is rolled out, and the regulations and any associated guidelines must be 'living documents' that the government should have a willingness to monitor and amend, as appropriate. Another organisation suggested that the review be supported by substantial data collection around the first year of operation of the benefit, as well as wider research within Scotland to understand the needs of the population in relation to disability assistance.
Another emerging theme from both consultation responses and the events was the centrality of including people with lived experience in the review process. Stakeholders were keen that the review should be wide ranging, and that service users and organisations who support service users should be involved (to reflect the population that Adult Disability Payment is serving). Importantly, 'securing input' to the review from people with lived experience was seen as not enough and the review group should include people with lived experience as integral members (to promote democratic participation by disabled people and their carers). There should also be provision for applicants to voice any emerging issues to the independent review panel, it was suggested.
Event attendees also questioned how experience panels would fit in with reviews. Overall, it was felt that involving disabled people in the co-production of future guidance and administrative changes should help make the new payment human-rights based and appropriately focused.
Other emerging themes (from the consultation responses and events) included that:
- the review must be independent of government;
- the timing of the review would need to be well thought out to ensure that the new payment had sufficient time to bed in and for people to have sufficient experience of the new payment to be able to provide meaningful feedback;
- the review should be comprehensive and have an all-encompassing remit which explores every aspect of the benefit (from who is accessing it, who is missing out, the financial needs of those applying), including adequacy, purpose, relationship to wider UK and Scottish social security systems, and retention of a points-based system or alternatives;
- that the Scottish Government should inaugurate a wholescale review of Adult Disability Payment, most importantly of all the aspects of the consultation and application process inherited from Personal Independence Payment, as soon as possible after transferring all clients to Adult Disability Payment;
- that the terms of reference of the proposed review should include an explicit consideration of Adult Disability Payment's compliance with the accessibility and adequacy elements of the right to social security; and
- that the review (and commitment to ongoing review) be explicitly written into the regulations:
"We hope that the scope of the review goes beyond the impact of the regulations, important as their operation in practice will be, but will also consider how the new, more accessible approach to applications which is being planned has worked in practice, consider any challenges there have been in the new system, where further improvements can be made, and new policy developments which should be considered." (Disabled People's Organisation)
Importantly, as emphasised by one group of event attendees, the review must be undertaken in an accessible way and over a period of time to ensure that there is sufficient time to gather people's views.
A specific request was made to see "greater accountability" for the Ministerial commitment to review Adult Disability Payment in 2023, since this was a key opportunity to ensure that the new Adult Disability Payment was rights compliant (although no further detail on exactly how this should be achieved was given).
A few organisations felt that the review should explore different approaches to determining eligibility for disability entitlements, and develop a more inclusive and holistic approach which adopted alternative approaches to a points-based system. It was suggested this would be needed in order to create a system which reflected the Social Security Scotland principles:
"An application process which is focused on what people can't do rather than what they can do is demotivating and debilitating in itself. We believe that the Scottish Government should further consider an approach which is more progressive and promotes independent living." (Disabled People's Organisation)
The need to increase scrutiny of the determination and application processes before and during any review was also stressed:
"…the Government has an opportunity to design a fairer system to assess mobility now. Delaying a review in to what is acknowledged as an unfair framework until 2023 while waiting until then to assess if the changes to the system actually make it fairer is questionable at best. This is approach is a complete contradiction to the principles of dignity, fairness and respect which are said to underpin the Government's approach." (Third Sector Organisation)
One event group recommended the review be extended to Child Disability Payment and Pension Age Disability Payment in the future.
Finally, several organisations commented that they would be keen to work with the Scottish Government to facilitate an ongoing dialogue to ensure that they could meaningfully participate in and contribute to the review process.
The consultation document contained a series of Impact Assessments, including:
- Equalities Impact Assessment;
- Children's Rights and Wellbeing Impact Assessment (CRWIA);
- Business and Regulatory Impact Assessment;
- Islands Communities Impact Assessment; and
- Fairer Scotland Duty Assessment.
Respondents were offered the opportunity to provide feedback or comments on each of these.
Almost all comments were general in nature or focused on elements of the regulations/Adult Disability Payment system itself, rather than reflecting the specific impact assessments. Overall, it was suggested that the impact assessments illustrated a human rights approach, with particularly positive elements including:
- introducing a multi-channel approach for consultations;
- consultations being carried out by professional practitioners;
- using informal sources of information regarding the client's needs, such as accounts from carers or family members, including the ability to challenge and contest informal observations where necessary; and
- minimising the need for excessive consultations and reviews whilst also providing continuing eligibility/awards.
Concerns generally focused on the Personal Independence Payment assessment process, with respondents arguing that this was often stressful and degrading (especially for those with life-long conditions). Again, it was felt that this should not be continued under Adult Disability Payment, and a few respondents welcomed the Scottish Government's commitment to end such face-to-face functional tests.
As discussed at earlier questions, the appropriateness of the eligibility criteria was highlighted. In particular, respondents focused on how they believed that the current draft regulations were exclusionary towards certain conditions, including mental health, autism, variable conditions, and those with collection devices. It was felt that the eligibility criteria and the determination process needed to be fairer, more inclusive, relevant and sensitively applied in all situations. It was also felt that there could be further consideration of particular conditions within the disability analysis of the impact assessments.
Several respondents welcomed that the equalities impact assessment reflected the experiences of those who use English as a second language. However, it was suggested that those supporting people to make applications, those receiving and assessing applications, and those tasked with taking on the responsibility for consultation with those who have applied, are often unaware of those challenges. As such, it was recommended that the regulations make clear the right to a suitable interpreter, that training on working with interpreters should be provided to all agency staff and those taking part in the consultation process, and that the right to access an interpreter and offering one as a matter of course should be promoted. It was also suggested that the access needs for consultations needed to include interpretation services, British Sign Language, other languages, etc., and that such adjustments may also be required in the provision of the consultation recordings to the client.
One organisation also felt that the impact assessments should identify areas in the regulations which may cause disadvantage to protected characteristics in practice, such as gendered application of the descriptors and eligibility criteria. Another commented that women (and especially carers) were more likely to be disadvantaged by many aspects of the regulations and urged for greater gender sensitivity to be applied. In particular it was argued that, data collection and analysis, including the production of gender-sensitive sex-disaggregated data, should be built into the system to ensure compliance with the continuous improvement equality and non-discrimination principles. Similarly, it was argued that a gendered analysis of the daily living and mobility descriptors should also be undertaken in advance of their application in order to ensure they move away from gendered assumptions as to who undertakes which role in each household.
Another organisation suggested that barriers or impact should be identified as part of the Equality Impact Assessment and that the existing impact assessment provided no estimate of whether the new Scottish system will reduce negative impacts. In this respect, they felt it would have been useful to have had access to the full Equality Impact Assessment.
In relation to the Fairer Scotland Duty Assessment, one respondent welcomed the commitment that the possibility of introducing lifetime awards was being reviewed. Another felt that this assessment made some findings which could be explored further in order to ensure that Adult Disability Payment delivers on the policy intent of tackling inequality. The same respondent suggested that the Fairer Scotland Duty Assessment could help identify data that Social Security Scotland could collect to measure the success of the policy, i.e. to tackle inequality:
"By collecting data on socio-economic disadvantage and looking at the outcomes for individuals who experience significant socio-economic disadvantage the Scottish Government can assess the success of this policy." (Third Sector Organisation)
All respondents were offered the opportunity to provide any other comments in relation to the regulations, impact assessments or Adult Disability Payment in general. Many reiterated points already raised in response to earlier questions and a few organisations again argued for the need to adopt the social model of disability:
"We need to move away from a needs-based system that asks what people are unable to do, to a more right-based model focused on what a person is entitled to, able to do and the support that enables them." (Third Sector Organisation)
A few respondents sought assurances or more information on the specifics of how the system would operate in practice, while others provided recommendations on how to ensure the system was accessible, operated fairly, and supported applicants. Some of these recommendations focused on the practical implementation of the draft regulations as planned, while others focused on changes they would prefer to see implemented ahead of Adult Disability Payment being introduced. It was suggested that greater discussion of the costs of delivering the new payment could also have been given in the consultation.
Going forward, a few respondents suggested that robust promotion would be required to ensure that those eligible for Adult Disability Payment were aware of it and how to switch over from Personal Independence Payment or apply. It was suggested that this promotion should extend to health and social care practitioners who would be in a position to advise and support those who might be eligible.
There was also one suggestion that more information about the change was needed in general to ensure that there was a smooth transition to the new payment. It was felt that the process needed to be clearly explained to recipients, and cause as little disruption as possible to current awards:
"I feel there should be more information given out, as early as possible, in order to reassure people that there shouldn't be too much disruption to their claims at the moment. A lot of people are going to be anxious about this and what impact it will have for them. So as much clear, easy to understand information given as early as possible would be a great help." (Individual)
One organisation stressed that all communications about the new payment should follow existing Principles of Inclusive Communication, to be as accessible as possible.
Other respondents were concerned about the transition period between the Personal Independence Payment and Adult Disability Payment, and were worried that applicants would have to fill in complex forms or undergo new scrutiny in order to transfer. It was felt this would be highly stressful for applicants and that clarity was needed regarding the process.
Feedback on the Consultation
Several respondents noted that they had found the information in the consultation difficult to follow or understand. It was suggested that the need to constantly refer between different sections of the consultation document, and being asked to comment on information contained later in the document than the question, was particularly confusing, challenging and 'stressful'.
It was also felt that there was a large amount of information that respondents were required to digest, and that the language used was often technical/contained jargon. The consultation document was also considered to contradict itself in places, with respondents feeling that some issues were not well explained/lacked the necessary information in order for respondents to provide informed feedback:
"It's inappropriate to ask to read and understand a 157 page document that is written in jargon, making this question impossible." (Individual)
One respondent felt that the consultation had not been advertised or promoted widely enough or directly to disabled people. They felt this was an important issue but that too many Personal Independence Payment applicants would be unaware of the planned change:
"With something so major it would have been nice if a letter could have been sent out to people receiving PIP [Personal Independence Payment], DLA [Disability Living Allowance] and carers allowance to let people know what was happening and to contribute." (Individual)
Finally, one organisation was disappointed that "the regulatory framework describing the manner, timeliness, and methods of assessment" had not been set out in the draft regulations. Similarly, two others were disappointed that the regulations for the new Short-Term Assistance were not included, were concerned that the regulations lacked detail in relation to the transfer from Child Disability Payment to Adult Disability Payment, and lacked detail on the transfer of cases between Scotland and the rest of the UK. As such, they felt these (and future drafts of the regulations) would require careful scrutiny and further consultation.
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