Independent Review of Adult Disability Payment: final report - summary

Chapter 2: Processes That Work

Social Security Charter

The Social Security Charter sets out what people can expect from Social Security Scotland, with the objective of treating people with dignity, fairness and respect. It plays a crucial role in implementing the values set out in the Social Security (Scotland) Act 2018 and a Charter Measurement Framework is used to report on measures relating to the commitments in the Charter.

I often heard the word “kindness” in my interactions with disabled people and stakeholders. People felt listened to and valued and in most cases the experiences shared with me were in sharp contrast to experiences with the DWP (specifically the delivery of PIP).

The less than positive issues raised by disabled people and stakeholders relate not to their overall experience, but to their frustrations with some of the processes adopted by Social Security Scotland including: the application process, providing supporting information, processing times, lack of communication, telephone response times, third party mandates, inconsistent decision-making, lack of understanding of particular disabilities or conditions and the fear of losing an award if considering a re-determination request.

Application process

Recurring themes from my engagement with disabled people and stakeholders highlighted the following positives:

• the larger font on the paper form is appreciated, especially for people with a visual disability
• the inclusion of guidance and pictures on the form was thought to be helpful for clients.

Length and complexity of the online form

I also heard that the length and complexity of the application form, with difficulties experienced by some people with the online application form (including setting up an account) can be barriers for disabled people.

There is early evidence that the provision of an online application form for Adult Disability Payment is reducing barriers to take-up among some disabled people. However, digital exclusion, in particular among some seldom-heard groups means it is important that there is provision of a range of application methods. Stakeholders also told me about the risks of digital exclusion, particularly when households may be acutely feeling the impact of the cost-of-living crisis.

Some of the barriers to application include the impact on a person’s mental health of filling in the application form. Many people told me that it is highly stressful, and they find completing the application form daunting.

Adjectives used to convey reactions to the form include overwhelming, intimidating, distressing, and exhausting. Clients presenting with mental health problems, Post-Traumatic Stress Disorder (PTSD) related cognitive impairment, and dyslexia were all specifically cited as having powerful reactions.

Stakeholders repeatedly raised the length of the form as an issue. 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.

I heard anecdotal evidence from more than one person that application forms can take at least three hours to complete. The length of time taken to fill in the form also highlights that some people are unable to fully explain the extent that their fluctuating condition impacts on their ability to complete tasks of daily living, without the support of experienced advisers.

Disabled people and stakeholders suggested some improvements to the application form:

• more open questions and space for free text responses throughout
• multiple choice questions for those who struggle with literacy and/or 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 it easier to fit into an envelope to return along with supporting documents
• make it easier to un-staple and copy the forms, as the booklet format means support organisations spend significant amounts of time scanning individual pages.

Answering functional questions

The most prevalent related theme following the consultation and call for evidence was confusion over the fluctuating conditions sections of the application form. While many disabled people acknowledged that there have been changes made to improve how applicants experience the process of completing the application form, these changes seem to have limited or no bearing on how much case managers understand the impact of fluctuating conditions. Some felt that the fluctuating conditions sections are ineffective at capturing the continued impact of bad days on a client’s life and wellbeing longer-term, and a few respondents found it difficult to describe the impacts of their fluctuating conditions within the application form.

"The questions were impossible to understand, and I wasn’t sure how to answer them. For example, did I talk about how my child was that week? That day? Things changed so quickly – I had to list all her medication and chemo drugs, but they would change a few weeks later. It was exhausting and upsetting and then at the end they said it would be six to nine months before I heard.”

- Individual response to Young Lives with Cancer

Other reasons for difficulty with completing the application form included:

• people finding the questions vague, contradictory or unclear
• being unable to understand the eligibility criteria in general
• some questions being too similar or repetitive and applicants could easily misinterpret them, especially when using terms such as “sometimes” or “always”
• the binary-seeming questions in some cases so that people sometimes feel that they cannot answer a straight “yes” or “no” to a question
• the application form does not explain the rationale for questions, leaving some people unsure how to answer
• that it is unclear what “reliably and repeatedly” mean in practice.

Technical issues with the online form

Amongst some of the issues identified in relation to technical issues, I frequently heard that:

• some people with certain conditions, for example, hearing impairments or people using assistive technology, find it difficult to access mygov.scot and complete online forms
• a client cannot edit their application form once submitted
• there is not enough file space to upload multiple documents when uploading supporting information online.

I welcomed it when the Scottish Government and Social Security Scotland told me they have attempted to address some aspects of the online application form, addressing some of the recurring issues to improve the client experience. Social Security Scotland continues to review the application form and guidance to try to ensure questions are relevant for all clients and to reduce repetition.

Recommendation 10:

Taking into account the findings in this report, review the application form, including its length and reconsider the way the questions are framed to maximise the opportunity for a client to articulate how their disability or condition impacts on their daily life and to reduce the anxiety and stress associated with the task of applying.

Processing times

The time it takes Social Security Scotland to decide if someone qualifies for Adult Disability Payment was a recurring theme raised by many disabled people. I heard about anxiety and stress associated with this, which can exacerbate the effects of a health condition or disability.

"I started needing a wheelchair and was not able to access other supports like a blue badge until my Adult Disability Payment application had been processed. This made every aspect of my life difficult as I could [not] park near places I needed to be, like work, the doctor, social things such as parking near a restaurant, etc.”

- Individual response to the Independent Review of Adult Disability Payment Public Consultation

While it is evident that Social Security Scotland has undertaken a lot of work to reduce the waiting times for a decision, the feedback I have received has highlighted that the time waiting for the decision is an area for improvement.

As well as highlighting the prolonged decision-making process people have told me that there is a lack of information provided to them in terms of how their application is progressing. Many people told me that they had to proactively engage with Social Security Scotland to see what stage their application was at, as they otherwise felt they would not have received any information about their application.

Another person with a similar experience told me that they had “chased a lot” but that the Social Security Scotland could improve the process with an automated system informing people it has received their application and it has been allocated to a case manager for a decision. There was a suggestion that extending opening times for telephone and webchat would assist many applicants as the opening hours clash with people’s work or caring commitments.

I heard concerns from stakeholders that introducing an online portal to track progress of an Adult Disability Payment application or re-determination could be challenging for people with certain conditions to use. In particular, people with progressive conditions, such as Huntington’s disease, who are at risk of losing the ability to use online systems as the disease progresses.

Recommendation 11:

As indicated in Social Security Scotland’s Business Plan 2024- 25, continue to do all possible to improve decision-making times and call wait times.

Recommendation 12:

In addition to providing an estimated processing time when an application is submitted, proactively provide regular updates on likely wait time for processing an application, review or a change of circumstances.

Recommendation 13:

Develop and deliver a “Track Your Application” online portal making it easier for clients to apply for Adult Disability Payment and to improve communication on the status of a client’s application.

Implicit consent

Many stakeholders told me that effective communication between Social Security Scotland and third parties such as advocates, welfare benefits advisers, benefit appointees, and others supporting individuals in applying for Adult Disability Payment is crucial.

Many people highlighted that there were more barriers for third parties obtaining consent to deal with Social Security Scotland than they had experienced under the DWP system of “implicit consent”. I heard suggestions that the approach was discriminatory given people’s communication needs. Several welfare rights advisers also suggested that they could not intervene on a client’s behalf to provide reassurance that Social Security Scotland had received an application, despite Social Security Scotland having a process called “unavailable consent” with guidance and staff training available on how to deliver it.

I also heard suggestions that the current absence of a dedicated helpline following the granting of consent to a third party resulted in delays in supporting individuals to provide Social Security Scotland with necessary information, which in turn delays the overall decision-making process.

Social Security Scotland told me it has begun to pilot an escalation process for third party representative organisations for vulnerable Adult Disability Payment clients. An initial pilot ran until 23 May 2025 and Social Security Scotland has extended this to all its benefits. Eleven organisations are now part of the pilot, six local authorities and five third sector organisations.

Recommendation 14:

Improve the service experience for Adult Disability Payment clients and third-party representatives interacting with Social Security Scotland on their behalf by:

(a) developing an understanding of any differences in the implementation of implicit consent (as used by the DWP) and unavailable consent (as used by Social Security Scotland) to ensure third-party representatives can receive equivalent standards of service from both

(b) assessing the consistency of the implementation of the current guidance on unavailable consent to ensure it is aligned with the policy intention and updating it where necessary, and

(c) using learning from the “interacting with third-party representatives” pilot to consider the merits of a third-party escalation route; to update policy and guidance about how declarations and third-party mandates are obtained and to ensure that the way in which mandates are obtained reflect the published policy and guidance

Supporting information

Whilst supporting information is outside the scope of my review, I believe it is important to reflect what I have heard, as the provision of adequate supporting information is a critical part of the initial decision-making process.

When shadowing case managers, I noted how most supporting information came from an applicant’s GP. I also saw how the quality and content of supporting information coming from GPs could vary widely. In one case, it contained very little, unhelpful information.

Social Security Scotland told me it has refined its approach to gathering information, recognising a GP is not always the best source of supporting information. It may now contact other professionals involved as part of a refined approach and changes to guidance for contacting GPs reflects this. When contacting GPs, it identified that asking specific questions about the client’s application was too onerous and time consuming, so now case managers request universal confirmation of the client’s conditions or disability, their needs or symptoms, and what medication, treatment, if any, they are prescribed.

It is too early to see if this revised approach is affecting the quality of decision-making but it reinforces the need and the importance of improving the list of who supporting information can come from so it better reflects the types of professionals the individual will have information from/will be able to easily contact, including that it does not have to be a medical professional (such as GP) but rather a professional involved in the client’s treatment or care. Stressing that supporting information from a wider support network can be a useful tool to help case managers understand their needs better is seen by disabled people and stakeholders as a positive step forward.

"My outcome was better than others but not great. I had my mental health advisor with me as an advocate during my telephone assessment and I think that was vital. They also helped me fill out the forms. They helped give evidence. My GP was not forthcoming or at all helpful in providing supporting evidence. ‘Luckily’ I had a letter from a retired GP explaining [Premenstrual Dysphoria Disorder] and how it impacts me.”

- Individual with Premenstrual Dysphoria Disorder

I understand that Social Security Scotland has sought to make improvements to the external guidance on supporting information for disability benefits. Social Security Scotland has also undertaken work to understand where case managers and practitioners are most likely to need support and to identify where improvements may be helpful in the implementation of the decision-making policy. I understand the process for Social Security Scotland case managers seeking input from Health and Social Care Practitioners continues to flourish, as early input has improved timescales for decision-making.

It is noted that Social Security Scotland has also held stakeholder events for key public sector providers of supporting information.

Observation 2:

Collecting insight/information on whether the changes to the external guidance on supporting information for disability benefits has had any impact on processing times may be a useful approach for Social Security Scotland moving forward.

Decision-making

The Scottish Social Security Charter sets out what the individual can expect in relation to decision-making. It commits to taking decisions in a consistent and accurate way and aiming to get determinations right first time.

I asked about the effectiveness of Social Security Scotland’s decision-making process as part of the consultation. The majority of respondents to the consultation said it is “somewhat effective” (35%) with almost 25% suggesting that the process is “not effective at all”. 80% of people said they understood the decision they received and 81% declared that they did not need support to understand the decision.

Social Security Scotland told me its case managers are trained to take a person-centred approach to decision-making by:

• considering how the individual’s condition affects them
• considering all their circumstances
• listening to the individual
• treating them as an individual
• recognising that the individual understands their own life best
• considering the individual’s support network, caring responsibilities and work responsibilities
• making sound judgments about the impact that an individual’s condition has on them
• approaching decisions from a position of trust
• only seeking one source of supporting information from a professional where possible.

During the time spent with case managers I saw first-hand the consideration given to the principles of person-centred decision-making and the care and attention applied to the responsibility inferred. What particularly stood out for me was approaching decisions from a position of trust.

Consistency

There is a concern that discrepancies and interpretative variations may lead to inconsistent outcomes, which might undermine the fairness of the process. However comprehensive and thorough the quality assurance process is, there will always be room for a level of inconsistency in a system that allows for case managers’ discretion coupled with a degree of subjectivity.

Although some welfare rights advisers felt there was a lack of consistency in decision-making, there was little objective evidence of this provided. Others felt that it was harder to predict the outcome of an application for Adult Disability Payment compared to PIP, with unclear explanations for decisions. I also heard from one person (and observed a case myself) where a decision changed significantly between application, re-determination and appeal.

Quality Assurance

Social Security Scotland took me through its quality assurance process, which appears very thorough and provides an on-going learning opportunity for case managers and other staff.

Although there are regularly reviews of entitlement decisions to identify potential improvements to the decision-making process, I saw or heard of many examples where re-determination decisions varied from the original case manager decision. This may be because of additional supporting information or the existence of new supporting information available to the case manager, or different interpretations of the criteria.

Continuous Improvement

"Only 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, response to the Independent Review of Adult Disability Payment, Public Consultation

Social Security Scotland has embarked on two major pieces of work aimed at improving decision-making following internal user research to understand where case managers are most likely to need support and where improvements were possible to the implementation of guidance.

One was concerned with providing more detailed guidance and a simplified, quicker way of accessing the tools required. The second was the introduction in 2023 of an intense, targeted training session that covered changes in operational processes to help better gathering of supporting information and covered common areas of the decision-making policy to make improvements to assist case manager’s understanding.

Justifications for decisions

I heard anecdotally of a small number of instances where case managers made assumptions about the severity of a client’s condition, based on whether they were attending physiotherapy or using prescribed medication. Similarly, I heard of instances of case managers assuming that a lack of input from NHS mental health services (which are under exceptional pressures) meant that the individual’s condition was not severe enough to qualify for Adult Disability Payment (this is despite decision-making guidance to the contrary). Welfare Advisers told me about experiences of beginning to receive “cut and paste” decisions.

Recommendation 15:

For Social Security Scotland to continually assess how one can balance the need for fairness and equity with the discretion that is inherent in the determination process.

Recommendation 16:

For the decision-making training and guidance to be reviewed to ensure that undue weight is not given to how a person manages pain or whether they have access to clinical support or therapy.

Recommendation 17:

For each letter from Social Security Scotland to be stand-alone so there is no need to cross reference with other correspondence and put the date of the correspondence on every page when sending letters to clients.

Reliability criteria

I received a great deal of feedback regarding individuals not being able to adequately describe the impact of their fluctuating conditions on their daily life when answering questions determined by the current activities and descriptors.

"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 response, to the Independent Review of Adult Disability Payment Public Consultation

Clients are not always aware of the existence of the “reliability criteria”, i.e., they do not fully understand that factors such as the time taken to complete an activity, the impact of completing an activity and the ability to undertake an activity as often as required are relevant.

"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 response, to the Independent Review of Adult Disability Payment Consultation

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 problem or is neurodiverse.

Another suggestion made was that the exact wording of the reliability criteria (that a person must be able to undertake an activity safely, to an acceptable standard, repeatedly and in a reasonable time) should form part of the activity descriptor itself. Although this would be repetitive, it would highlight the importance of this part of the decision-making process and provide an opportunity for the client to answer the questions on the application form more fully.

I repeatedly heard that confidence in this part of the process is limited because of a “lack of transparency” or because in some determination letters the reasons for not making an award make no reference to the reliability criteria, leaving people to wonder if they were applied fairly or at all.

Recommendation 18:

Ensure rigorous application of the reliability criteria to ensure consistency in the decision-making approach.

Recommendation 19:

The reliability criteria should be explained clearly both in promotional materials, at the start and throughout the application process with more examples, so that clients understand its importance and have a clear understanding of how it is applied in making decisions.

Recommendation 20:

Make clear in decision-making guidance and in training that the inability to complete one activity reliably may be relevant to whether or not a client can complete other activities and should be proactively considered by case managers.

Recommendation 21:

Social Security Scotland should ensure that explicit reference is made to the reliability criteria in all decision correspondence, so that clients and representatives can understand if, and how, the criteria have been applied.

Recommendation 22:

To ensure that the outcomes of case law decisions are reflected in decision-making guidance and training.

Case Discussions

Case Managers can utilise case discussions as part of the decision-making process in order to draw on advice and support from Health and Social Care Practitioners to understand the client’s disability or impairment further; to assess the value of the supporting information provided or the types and routes for supporting information that could be further explored.

Eligibility for Adult Disability Payment is based on the impact that a condition or disability has rather than conditions or disabilities themselves. However, I heard that there is sometimes a perceived difference between how case managers manage applications from clients with physical health conditions and clients with mental health problems. There was a perceived lack of transparency and consistency, with people often telling me that they believe this overlooks the psychological symptoms that can have the most detrimental impact on their life.

Whilst it is not possible to ensure that Social Security Scotland trains its case managers and practitioners in relation to every condition or disability, many disabled people told me that there was a need for case managers and practitioners to understand the connections between different conditions, the functional impact these can have and lived experience.

"…In some cases, PMDD was not mentioned on the final decision letter despite it being a focus of the application.”

- Interim report. Premenstrual Dysphoric Disorder and the welfare state: recommendations for reform

Social Security Scotland do introduce awareness raising sessions when it is apparent that there are several new applications relating to a less common impairment and they may not have the knowledge or expertise within the practitioner team to support case managers to make decisions.

Recommendation 23:

To review the training and guidance available in relation to decision-making to ensure there is no bias in the system when considering mental health problems as opposed to physical conditions and to reinforce the point that an individual’s condition is just one of many factors that the case manager needs to take into consideration when deciding upon an award.

Recommendation 24:

For Social Security Scotland to introduce a plan to clarify the approach they take to engage charities and specialist organisations in providing guidance and training to case managers and practitioners on specific disabilities or conditions.

Consultations

Having read the guidance provided to case managers and practitioners and getting the views from Social Security colleagues on the process it is evident that consultations, when they occur, play an important role in the decision-making process.

I heard universal praise from disabled people and stakeholders about the cessation of DWP-style assessments.

When I sought views on consultations, I heard that clients found practitioners helpful and consultations less stressful than expected. Two respondents noted that the people they spoke with, whether that was case managers clarifying application points or healthcare professionals undertaking a consultation, were kind. One individual noted that they appreciated the lack of medical assessments, and another felt the phone call they had was efficient.

"The lady was very polite, explained fully why she was calling and didn’t keep me for too long. She only asked one question, and it wasn’t intimidating or anxiety inducing.”

- Individual response to the Independent Review of Adult Disability Payment Consultation

Some disabled people who were not asked to attend a consultation, told me that they would have appreciated the opportunity to speak to the case manager. In some cases, this was because writing down all the relevant information in an application form was difficult and in other cases people thought it would speed up the process if they had an opportunity to talk to someone directly. There was also a strong feeling amongst some people that it was their life, their story and as a result case managers should hear their voice, and they should be more involved when someone is taking decisions that will impact on their life.

Another recurring theme from welfare rights advisers, is in relation to how much agency the client has in determining the format of their consultation. Some advisers felt that some people are disadvantaged by having a non-face-to-face consultation. For example, people with learning disabilities may find it easier to engage with someone face-to-face.

Recommendation 25:

For the initial choice of whether or not to have a consultation to be the client’s choice, rather than the case managers.

Recommendation 26:

For the initial choice of format for the consultation to be the client’s choice to ensure the client understands fully the options available and clients do not feel in any way compelled to default to the telephone route.

Challenging a decision

Re-determinations

It is vital that people who disagree with a decision made by Social Security Scotland have appropriate opportunities to challenge those decisions. Re-determinations provide a first stage of recourse and allow Social Security Scotland to quickly review a decision at an early stage by making a new decision.

The most common reasons cited that prevent people from seeking re-determination include:

• finding the process confusing and therefore did not seek a re-determination in the right time limit or were unable to seek a re-determination without assistance
• concerns that a re-determination may result in fewer points
• concerned about the impact of the process on mental wellbeing
• people do not understand that seeking re-determination is within their rights
• not having a copy of their original application, or having lost documents
• previous negative experiences with PIP.

I sought views about the re-determinations process as part of my consultation and call for evidence. People expressed views that would suggest they feel several things are working well, including the flexibility to provide additional supporting information in multiple formats and offering an online form.

People shared their views about potential barriers to seeking a re-determination. I heard that the trauma of re-telling their story can be a significant challenge for some people. Some people were reluctant to seek a re-determination in case Social Security Scotland reduced their existing entitlement. Others told me they worried that Social Security Scotland may view additional information produced during the re-determination stage suspiciously.

Observation 3:

The re-determination process currently involves a new case manager looking entirely afresh at a disputed decision. This can result in the risk of a client losing entitlement or seeing their entitlement to Adult Disability Payment reduced. However, a client may equally see their entitlement increase, because of the discretionary way in which decisions are made. Communicating the risk of losing an award to clients may result in clients choosing not to ask for a re-determination if they fear that their entitlement may be withdrawn. It is worth considering how to ensure clients are appropriately informed in a way that does not discourage them from exercising their rights.

Recommendation 27:

To consider how to mitigate the risk of removing an award, for example, by empowering case managers only to focus on the areas in dispute raised by the client if a new decision is likely to be disadvantageous and adopting the previous rationale for making a decision in those areas not in dispute.

Appeals

If a person disagrees with their re-determination or Social Security Scotland misses their statutory deadline to make a re-determination, they have the right to appeal to the First-tier Tribunal. Social Security Scotland includes an appeal form with every re-determination outcome letter. People can also lodge an appeal online or by calling Social Security Scotland.

One respondent to my call for evidence said that one of the main reasons for appealing or not is whether a person has support during the appeal process. Welfare rights advisers and advocates may provide clients with the confidence to appeal a decision. People who felt that the original decision did not reflect their circumstances or that Social Security Scotland had not captured supporting information accurately were more likely to ask for an appeal.

Reasons cited that might prevent appeals included:

• the possible impact of the appeal process on mental wellbeing – on occasion driven by bad experiences with appeals under PIP
• clients not understanding their right to do so or how to move forward with an appeal
• lengthy timescales.

I note that the Scottish Government has introduced changes to the appeal process through the Social Security (Amendment) (Scotland) Act 2025. Social Security Scotland can now make a new determination that is advantageous to a client after an appeal has been lodged (with the client’s consent) that brings the appeal to an end.

Recommendation 28:

For Social Security Scotland to improve re-determination timescales.

Recommendation 29:

For information about appeals, and re-determinations to be given more prominence on the front page of the determination letter.

Short-term assistance

Short-term assistance is a temporary payment unique to Scotland. A person can access it if they were or are in receipt of Adult Disability Payment and they meet both of the following criteria:

• Social Security Scotland has decided to reduce or stop their long-standing award
• the person has requested a re-determination or appeal against this decision.

The payment tops up the person’s award to their long-standing award level for the duration of the re-determination or appeal. A person does not have to repay the money, regardless of the outcome.

I heard that disabled people welcomed the introduction of short-term assistance and saw it as an improvement over the DWP process. However, I also heard some views that suggested Social Security Scotland should automatically award short-term assistance, rather than a person having to apply.

Recommendation 30:

To consider introducing automatic awarding of short-term assistance with an opt-out clause to acknowledge a client’s right to choose.

Changes in circumstances

There remains confusion amongst some clients about the purpose of reporting a change of circumstance. Some people I spoke to thought this only applied if something practical happened in your life like moving home or changing your bank account. Others said they would report a change of circumstance if there were changes to how their disability impacted them; if their condition worsened, or if they received any new medical interventions.

As with re-determinations and appeals several people told me that fear of losing existing benefit or ending up with a reduced award can deter people from reporting a change in their circumstances.

Some clients reported feeling disadvantaged because an increased payment did not take effect until a later date (i.e. not from the date they initially reported the change of circumstance).

Two respondents to the consultation liked the online process for submitting a “change of circumstances” form. Two respondents felt Social Security Scotland has not considered updated supporting information and two were confused about what information they could submit alongside their “change of circumstances” form. One individual felt that a practitioner asked irrelevant and intrusive questions during a telephone consultation to review their change of circumstances.

Recommendation 31:

Provide more detailed guidance on what qualifies as a change of circumstances; the reasons why reporting a change of circumstances is important and provide examples to illustrate the types of situations when it might be necessary.

Effect of time in hospitals and care homes

One stakeholder felt that the cessation of payments of Adult Disability Payment in certain circumstances, such as when a client is in hospital for more than 28 days, is unfair. They felt this places a significant administrative burden on young cancer patients to record days spent in hospital across an extended period, since people with cancer can have frequent short-term hospitalisations (due to treatment or sporadic infections). The Scottish Government’s position is that a person’s care or mobility needs are met out of public funds in the alternative accommodation and therefore the “28-day rule” avoids duplication of public funds.

Recommendation 32:

To re-visit the eligibility rules in respect of cessation of Adult Disability Payment if 28 or more days are spent in hospital.

Qualifying periods

A person must have had a disability or health condition for at least three months, and they expect the condition to last for nine months more to qualify for Adult Disability Payment. This is sometimes known as the “backwards and forwards test” or “qualifying period”. There is no qualifying period for individuals who meet the Special Rules for Terminal Illness (SRTI).

The former DACBEAG had recommended the removal of the three-month qualifying period in its advice to the Scottish Government on Assessments in December 2018:

"We looked at the past period test for PIP, where the condition had to be of at least three months duration before an award is made. We felt that this qualifying period should be abolished, as it discriminates against people who experience sudden onset debilitating conditions (e.g. stroke) who are unable to claim disability benefit for the first three months of their condition.”

- DACBEAG Advice on Assessments

An individual who makes a new application for Adult Disability Payment will not always receive arrears of Adult Disability Payment for the three-month qualifying period immediately following a diagnosis. This also precludes access to other types of support, such as a Blue Badge or premiums of Universal Credit (UC). Carers may also not qualify for Carer Support Payment until a person begins receiving Adult Disability Payment. However, the qualifying period is not dependent upon having a diagnosis, but on needs, so it is therefore possible someone may have met the qualifying period by the time they receive a diagnosis.

Due to the immediate nature of the extra costs experienced by young cancer patients and their families, Young Lives vs Cancer believe children and young people with cancer and their families should be entitled to access welfare benefits at once following diagnosis and not be subject to a qualifying period.

Being treated for cancer is not the only time when these issues arise and therefore using supporting information quickly may be worth some further consideration, whilst acknowledging that in terms of fairness and equality, people would need to satisfy explicit criteria. I also acknowledge this would mean a big change that is not only relevant to Adult Disability Payment and may therefore be out of scope of this review.

Automatic entitlement

I am mindful that whilst the eligibility criteria for other forms of assistance such as the Independent Living Fund, Blue Badge or receipt of social care, are different from Adult Disability Payment, one way to improve the client experience would be making an automatic award if a person is in receipt of these types of assistance.

I heard from one stakeholder that the way cancer impacts a person’s daily life is not compatible with a points-based system. I also heard from the same stakeholder that they appreciate the interactions between the medical and social model, but in some instances medical supporting information should be sufficient to speedily proceed through the application process in a way similar to the SRTI process.

Work undertaken with the Social Security Experience Panels was supportive of a process of automatic entitlement, with 80% of respondents answering yes to: “Should people with certain conditions be automatically entitled to disability benefits?” (n=241). Only 10% of respondents said “no” and a further 10% said: “don’t know/not sure”.

The report on the findings noted:

"Participants were asked if they could think of any ways that Social Security Scotland could identify those who may be automatically entitled before they apply. Responses tended to fall into three groups: enhanced data sharing between the NHS and government, an improved application form and referrals from third parties.”

- Report on Social Security Experience Panels: Award Duration and Automatic Entitlement

Keeping in mind that the SRTI and supporting information are outwith the scope of the Review, I am mindful that the Scottish Government will wish to consider on its own terms how to implement the following recommendation (if accepted):

Recommendation 33:

For consideration to be given to granting automatic entitlement to Adult Disability Payment when satisfying certain conditions or being in receipt of other forms of assistance without having to satisfy the qualifying period.

Award periods and reviews

Entitlement to Adult Disability Payment does not have a fixed end date. People who receive Adult Disability Payment will usually have their entitlement reviewed using a “light touch review” to ensure that they are receiving the correct level of payment. Whilst Social Security Scotland conducts a review, the person remains entitled to Adult Disability Payment.

When I visited Social Security Scotland, a case manager told me that two years is usually the minimum award period and ten years is the maximum. Social Security Scotland case managers can also decide that a person does not require a review of their Adult Disability Payment. This is known as an “indefinite award”.

Several factors influence whether a case manager sets a review period, or whether they decide to make an indefinite award. These include the likelihood of the impact of a person’s needs changing over time, and whether the person’s needs are highly unlikely to improve.

I heard in my engagements with stakeholders that the “light touch reviews” are a welcome alternative to DWP-style reassessments. Disabled people told me that they appreciated the ability to submit review paperwork online and most cited effective communication throughout the process. Most also appreciated the lack of face-to-face assessments at the review stage.

Many disabled people told me that they did not always understand the rationale for the review period set by Social Security Scotland.

"I have received reward periods of 3 to 5 years. As someone who was born with a condition that impacts my daily life and will never improve, longer review periods give you a sense of relief that you will not continually be subjected to evaluations and reassessments which add to the daily stress and anxiety of living with a condition that daily impacts your life.”

- Individual response to the Independent Review of Adult Disability Payment Consultation

"The award of Adult Disability Payment on an indefinite basis offers reassurance and certainty about entitlement which leads to better financial security.”

- Alzheimer Scotland response to the Independent Review of Adult Disability Payment Consultation

I also heard in these engagements about some people having shorter review periods for Adult Disability Payment when compared to PIP. Stakeholders told me that this provoked anxiety and created a perception about inconsistencies in the way Social Security Scotland is making decisions about entitlement to Adult Disability Payment.

There were also several people who said Social Security Scotland could improve communication about reviews and review periods. Some disabled people and stakeholders told me they felt they waited too long for a decision and others told me the form was time-consuming to fill out. I do note however that people have the option to say that there have been no changes and in these circumstances filling out a full form is not necessary.

Recommendation 34:

As part of Social Security Scotland’s quality assurance process, review a selection of determination letters to assess how effective or otherwise the communication is in relation to the award duration and/or consider using the client survey to gather feedback on decision-making and communication in this regard.