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

Executive Summary

Adult Disability Payment (ADP) was launched on 29 August 2022 and is one of fifteen payments that Social Security Scotland (SSS) delivers. Adult Disability Payment has replaced Personal Independence Payment (PIP) for disabled people of working age in Scotland. To understand people’s experiences with Adult Disability Payment during the first year of delivery, the Scottish Government has commissioned an Independent Review of Adult Disability Payment, chaired by Edel Harris OBE, which began in February 2024.

The lived experiences of disabled people, people with a long-term health condition and people with a terminal illness will guide the review. There were three possible avenues for public participation: a consultation, a call for evidence and engagement events. In total, 84 consultation responses were received from 80 individuals and 4 organisations and 36 responses to the call for evidence were received from 29 organisations and seven individuals. The Independent Review organised nine engagement events across Scotland which were attended by 19 individuals and 28 organisation representatives^[1].

Public consultation of this kind means anyone can express their views; individuals and organisations interested in the topic are more likely to respond than those without a direct or known interest. This self-selection means the views of respondents do not necessarily represent the views of the entire population.

Overview

A range of views were expressed in responses. Many gave positive feedback about Adult Disability Payment and Social Security Scotland, speaking highly of some staff interactions, describing feeling respected during the application process and welcoming the lack of medical assessments. However, respondents also suggested changes they felt would encourage more people to apply for Adult Disability Payment, improve the efficiency of the application process, ensure the breadth of conditions and impacts are considered in decision-making and ensure clients continue to be treated fairly. Key suggested improvements are highlighted in the following summary.

Awareness of ADP

There were concerns across all strands of engagement that awareness of Adult Disability Payment remains low. It was frequently suggested that Social Security Scotland publicise Adult Disability Payment through media channels and use more community networks, including GPs, community link workers, and social care workers, to help make people aware of their eligibility. A recurring suggestion was for greater acknowledgement of the key role of the third sector in providing information and individualised support to help people understand their eligibility and apply for Adult Disability Payment.

Reasons cited for the lack of uptake of Adult Disability Payment included a lack of awareness of eligibility, stigma around receiving disability benefits, previous negative experiences with Personal Independence Payment, and stress related to the application process, particularly the length of the application form. Providing individualised support, an improved process, and ensuring fair treatment of applicants were highlighted as ways to encourage uptake.

Pre-application support

Respondents generally supported a more detailed eligibility check, suggesting it could save people the time and energy of applying if they knew they did not qualify. A few suggested that any eligibility checker must capture the full range of qualifying conditions to ensure people were not wrongly advised. However, some preferred the current approach as they felt sufficient information already existed to help people understand whether they are likely to be entitled. Criteria recommended for inclusion in an eligibility checker included the impact of disabilities or conditions on daily life, information about daily living and independent living, emotional wellbeing and cognitive state, assistance needed to complete tasks, and financial circumstances.

Clients reported mostly positive experiences with the Local Delivery Service (LDS) and Independent Advocacy Service. However, reported usage of both services was low with one in ten (11%)^[2] using Local Delivery Service and fewer than one in ten (6%) using the Independent Advocacy Service. Many acknowledged that greater awareness of these service was needed. Recommended improvements to the services from both the consultation and call for evidence included improved staff training, better communication such as dedicated telephone lines, greater interaction with third-party organisations, and reassurance about the impartiality of the advice offered.

Accessibility was a recurring theme in all aspects of Adult Disability Payment processes. Calls were made to improve accessibility by considering the needs of people with different conditions, for example neurodiverse or visual impairments, and those in seldom-heard groups who may require translation or interpreter support.

Daily living activities and the ADP application form

Views on the clarity of the daily living part of the Adult Disability Payment application were mixed. One third (35%) agreed that the rules for the daily living part of Adult Disability Payment are easy to understand, 48% disagreed and 17% were unsure. Reasons for disagreeing included the use of unclear terminology and difficulties relating the activities to real life, fluctuating conditions or 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 part easier to understand. Others suggested using more illustrations, while event participants emphasised the importance of accessible support for applicants.

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 their conditions were too difficult to describe and felt they would struggle to highlight the impact of their conditions within the existing activities.

Respondents suggested making changes to the activities in the daily living component to ensure they: gather relevant information about a wider range of conditions, including those who currently feel they are not represented in the application process; consider the broader impacts of a condition on daily living; reflect people’s lived experience of real-life scenarios; and reduce confusion around fluctuating conditions. There were also calls for greater transparency about the allocation of points across the activities.

Views 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 are 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.

Two thirds (68%) 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 theme 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. Frequently raised suggestions included reducing the complexity of the application process and considering whether shorter application forms, clearer questions and simpler language can be used, and providing more examples and case studies of how the rules apply in practice.

Fluctuating conditions

Seven in ten (70%) felt the daily living activities do not allow the impact of fluctuating conditions to be accounted for adequately. Both respondents and event participants suggested that people may find it hard to describe the impact of their fluctuating conditions, with the Adult Disability Payment application form viewed as being too rigid and inflexible, with little opportunity to describe nuance or the impact of multiple conditions.

Mixed views were expressed about the fluctuating conditions section of the Adult Disability Payment application form. Some consultation respondents found it confusing or felt it did not consider the impact of bad days on life and wellbeing. In contrast, some others commented that the section allowed them to adequately represent their conditions.

Respondents suggested changing the 50% rule, with suggested alternatives including a 30% rule or a sliding scale depending on the impact of fluctuating conditions on daily life. Considering the wider impacts of how completing a task can affect a person’s life was also recommended as a change.

Decision-making and re-determinations

Three fifths (60%) felt the Adult Disability Payment decision-making process is effective in understanding a person’s daily living needs, with some comments outlining positive experiences. However, 17% found it ‘not very effective’ and 24% ‘not effective at all’. Reasons for this included that the process would benefit from a more qualitative and individually focused application form which more effectively captures details about a person’s condition and lived experience. Others felt that their supporting information was ignored in the consideration of their application.

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 and potentially reducing inconsistencies in decision-making.

Among the few respondents who had a consultation as part of the decision-making process, most had them on the telephone and typically indicated that the consultation happened at a time convenient for them. Few provided qualitative feedback about the consultations. Those who did said that they felt the practitioner was polite and clear in their intent. Suggested improvements provided by a few respondents included greater clarity that the consultation could be held in a way that best suits the person applying.

Four fifths (80%) of those who had received a decision understood it. In open comments, however, some described confusion about their award and the points they received, often reflecting disagreement with the decision. This was also reflected in the call for evidence, where respondents highlighted instances where decisions appeared to be inconsistent with supporting information. Calls for better and more personalised communication about decision-making was a key theme in both consultation and call for evidence responses. This included calls for clearer communication about how points had been allocated and decisions made, and information being delivered in a method that best suits the client, such as large font format.

One quarter (26%) had asked for a re-determination. Those who had provided feedback on what worked well, including the ability to submit personal statements and being able to provide supporting information in multiple formats. Others highlighted concerns about long timescales for a decision. Event participants had experienced stock phrases in re-determination decisions, expressing a concern that this indicated the decision-making or communication was not unique to each applicant. Others suggested that applicants be allowed to review their full application before a re-determination.

Call for evidence respondents noted that the re-determination process could be confusing for some. Some organisations highlighted that their clients were not well informed about the Adult Disability Payment process and were not aware that points could be removed during a re-determination process, for example. Others cited confusion about the process as a reason people did not seek re-determinations. Negative impacts on wellbeing and lengthy timescales were mentioned as other reasons clients may not seek re-determinations. Similar reasons were given for why clients may not seek an appeal.

Review periods and change of circumstances

Two fifths (65%) had experienced an Adult Disability Payment review. Those who had were positive about the lack of face-to-face assessments during a review and felt that communication leading up to a review was clear. However, reducing the waiting time to hear about review outcomes and more communication through text or email were mentioned as areas for improvement. Respondents typically favoured using longer review periods, suggesting these would reduce clients’ stress and anxiety and provide greater financial stability. A few questioned why permanent or deteriorating conditions were still given review periods or called for greater use of indefinite awards for such conditions.

Fewer than one in ten (7%) had received an indefinite award. Those who had described positive improvements to their quality of life as a result. This included improved access to care, financial stability, and reduced stress about future Adult Disability Payment applications. These positive impacts were also reflected in call for evidence responses. However, call for evidence respondents requested clearer award and indefinite award letters, while a few consultation respondents noted the confusion they had experienced due to receiving their first payment before their award letter.

One third (32%) had reported a change of circumstance to Social Security Scotland. While two fifths (39%) of those who had felt they had been treated with dignity, fairness and respect, fewer than one in ten (8%) felt they had received regular updates. Only a few respondents provided further details about their experience. Some spoke highly of the assistance they received, although it was not always clear which organisation had provided the assistance. Shortening response times and better communication about the status of their change of circumstance were suggested as improvements. Other suggested improvements included clearer guidance on submitting a change of circumstance, providing more details about what needs to be included in the change of circumstance, and integrating all benefit systems to help those applying get the assistance they need with less paperwork.

Processing times

Three in ten (29%) received a decision about their application within three months, 42% between three and six months and it took six months or more for three in ten (30%). While consultation and call for evidence respondents emphasised that shortening processing times would improve applicants’ experience, they also noted that better communication could alleviate some anxiety. Respondents suggested email or text updates or a dashboard for applicants to monitor the progress of their application or re-determination, as well as making it easier to contact Social Security Scotland for an update. Shorter processing times were also called for to minimise financial harm to clients.

Call for evidence respondents highlighted several groups who they felt were adversely affected by long processing times. These included people needing to access other disability benefits, such as a Blue Badge or a mobility device through the AVE scheme, carers who were struggling financially, those with mental health conditions, those with degenerative cognitive conditions and lone parents.

Next Steps

The responses to the consultation and call for evidence, and in particular the lived examples provided by individuals who receive Adult Disability Payment and those who have supported people to apply, will provide valuable and informative evidence for the Independent Review to draw on when considering its recommendations.