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

2. Take-up of Adult Disability Payment

The consultation paper explains that take-up means how many people who are eligible for a benefit actually receive it. The Scottish Government and Social Security Scotland wish to encourage take-up of benefits and have a range of strategies designed to improve take-up. Although there is no separate benefit-specific take-up strategy for Adult Disability Payment, this is something that the Scottish Government may consider in future. This chapter presents the analysis of responses to questions which sought views on the most effective ways to help people find out about Adult Disability Payment, and what else could be done to increase Adult Disability Payment take-up.

Key findings

• There were concerns across all strands of the engagement that awareness of Adult Disability Payment remains low. Respondents and participants at events suggested that Social Security Scotland publicise Adult Disability Payment through media channels and use more community resources, including GPs, community link workers, and social care workers to help make more people aware of their eligibility. Third-sector organisations were considered a reliable source of information and support about Adult Disability Payment and the application process.
• Reasons cited for the lack of uptake of Adult Disability Payment included a lack of awareness of eligibility, including people who thought their work status disqualified them from applying, stigma around receiving disability benefits, fear related to previous negative experiences with Personal Independence Payment or Disability Living Allowance or the possibility an award may diminish, 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.

Consultation

How effective do you think the following methods could be at helping people to find out about Adult Disability Payment?

How effective do you think the following methods could be at helping people to find out about Adult Disability Payment?	Very Effective (%)	Effective (%)	Somewhat Effective (%)	Not very effective (%)	Not effective at all (%)
Q1A. Advertisements for Adult Disability Payment (television, social media/online, newspapers etc) (n=81)	25	27	25	11	12
Q1B. Working with organisations like charities to inform those who use their services about Adult Disability Payment. (n=82)	37	24	26	9	5
Q1C. Running events within communities to inform people about Adult Disability Payment. (n=82)	23	16	30	13	17

Across these three questions, respondents who answered were most likely to believe that working with organisations such as charities would be the most effective way to inform people about Adult Disability Payment. Almost nine in ten (87%) felt this would be effective to some extent, and 37% ‘very effective’, compared to 77% effective to some extent and 25% ‘very effective’ for advertisements and 72% effective to some extent and 23% ‘very effective’ for community events. Similarly, across engagement events, participants highlighted supports provided by charities, community groups and support networks as many people’s main source of awareness about Adult Disability Payment.

Q1D. Do you think there is anyone who might be left out by these methods? Please give reasons for your answer.

Those not accessing media

Two thirds of consultation respondents suggested groups who might face barriers to finding out about Adult Disability Payment. Several mentioned people not who do not or cannot access media as being at risk of not hearing about Adult Disability Payment. Reasons for a lack of access included low literacy skills, both digital and written, lack of internet access and people’s conditions or disabilities affecting their ability to access media or information. Some respondents highlighted difficulties for people unable to leave their home in accessing information. At one stakeholder event it was highlighted that not everyone reads or understands official letters.

“There are some people who do not have access to the internet, who also are perhaps not proficient in reading and or writing, and who perhaps have some sort of learning issue might not have the assistance and or help to be able to access these application forms.” – Individual

Everyone could experience barriers

Several felt it was possible that anyone could struggle to find out about Adult Disability Payment, a view endorsed in a few engagement events, where a general lack of awareness of Adult Disability Payment among the public was highlighted by participants. Individual respondents often highlighted their own challenges finding out about Adult Disability Payment, and one organisation noted they dealt with many people who had not heard about it.

Those who believe they are not entitled

Not thinking Adult Disability Payment applied to them was another reason some felt could be a barrier to finding out about Adult Disability Payment. The main explanation given was that working people may not think they are entitled. Those who did not identify as disabled were also highlighted. At one engagement event, this latter group was considered to include, for instance, those living with long-term conditions who did not realise these were capable of being considered disabilities. One consultation respondent suggested a “much wider ranging publicity campaign is needed” to address this issue.

Other groups that could experience barriers

Some felt people with learning disabilities or older people may experience barriers in finding out about Adult Disability Payment, while a few suggested people with mental health issues, hidden disabilities or those with physical / sensory issues. Other non-disability related groups that might experience barriers included people who find it difficult to access events, those in residential or insecure housing, those with English as a second language, and carers of 18+-year-olds or young people leaving school. Homeowners, or those who live independently with less professional contact, might also experience barriers according to participants in engagement events.

Q1E. Are there any other methods that might help people find out about Adult Disability Payment? Please give reasons for your answer.

Two thirds of consultation respondents left a comment in response to Q1E. The three most prevalent themes were that it would be useful to have greater media coverage, distribution of information via health and social care and direct support from a professional. These themes were also reflected across engagement events.

Greater media promotion

The most prevalent theme was that greater media coverage would help promote Adult Disability Payment. Suggestions included raising awareness through television, newspapers, radio, social media and other online channels, potentially as part of a national campaign. One suggested optimising search engines so Adult Disability Payment messaging would be directed towards disabled people. Conversely, recognising that some people do not see themselves as disabled, suggestions were made in engagement events to promote Adult Disability Payment as a support for those who need help with daily living tasks and not focusing on their disability.

The need for more promotion was also a recurring theme at subsequent questions Q1F and Q2, with similar suggestions being made as well as calls for the distribution of leaflets and sending letters directly to potentially eligible people.

Promote through health and care

Distributing information, such as leaflets and posters, in places potentially eligible people were likely to access was seen as a way to raise awareness of Adult Disability Payment. Several held this view, including the Health and Social Care Alliance Scotland, #MEAction Scotland and event participants. Respondents suggested places that could distribute Adult Disability Payment information, including hospitals, health centres, GP practices, care providers, disability charities or services, carer centres, Jobcentres and foodbanks.

“Leaflets advertising ADP could be in waiting rooms/areas.” - The Neurological Alliance of Scotland (NAoS)

Direct approach from a professional

Information from a professional in contact with those who may be eligible for Adult Disability Payment was advocated by several individuals. Professionals suggested by respondents included GPs, nurses, other health professionals, psychologists, social workers and Jobcentre staff. One felt welfare rights advisors should visit people before they are discharged from hospital, with a call in one consultation group for information to be provided at the earliest opportunity, such as at the point of diagnosis.

“I think that people may benefit from someone taking the time to go through the literature and explain in a way that they'll be able to understand. I think GP surgeries are good places to target.” – Individual

Other suggestions

Some suggested promoting Adult Disability Payment in buildings or places accessed by the public. These included libraries, community centres, leisure facilities, supermarkets or bus shelters.

A few felt information could be sent to people’s home addresses. Singular comments were that existing client information could be used to contact people and that there was a need to provide a range of formats to cater for the different ways people access information.

Q1G. What reasons do you think might mean someone may be unwilling to apply for Adult Disability Payment?

Unsure it applies

Over four in five consultation respondents commented on why someone may be unwilling to apply for Adult Disability Payment. Several respondents felt that people may be unsure if Adult Disability Payment is a benefit that applies to them. Reasons given included that people may not see themselves as disabled, that they believe their condition doesn’t make them eligible, they believe Adult Disability Payment is not available to people who work, or that they may have never received benefits previously and are therefore unaware of Adult Disability Payment.

“Not wishing to use resources they don’t feel entitled to, and not ‘identifying’ as disabled.” – Individual

Too complex or stressful

The second most prevalent theme was that the application process for Adult Disability Payment is too stressful, complex or difficult and some people would require help to overcome these challenges. The application process was also highlighted as challenging during engagement events, with participants noting it was difficult to complete without support. Event participants described it as distressing, overwhelming, embarrassing and uncomfortable to answer questions about limitations and struggles over again. One felt the application process was not accessible enough to people with certain disabilities or health conditions, such as those who were neurodivergent, who would find it difficult to apply. Some felt the process could be overwhelming or exhausting. More detail about the application process is provided in Chapter 5.

Too intimidating or accusatory

Perceptions of people being judged or accused of lying, or fear of the process, was raised by several. Negative feelings were expressed, such as fear, degradation, and humiliation, but also embarrassment in “being made to feel like you are begging for something”, as an individual noted. At engagement events, fears of being under the scrutiny of officials, fears it may affect other benefits or the mental health impacts of dealing with official systems, such as having to meet deadlines, were also highlighted. Commonly raised issues included a lack of trust that people would be treated with respect and dignity.

In multiple engagement events, participants acknowledged that these feelings were often a legacy of some people’s past experiences of Personal Independence Payment and that Social Security Scotland’s approach was a significant improvement. However, at one engagement event, it was felt that the tone of Social Security Scotland was becoming more like Department for Work and Pensions (DWP) over time; for example, decision letters becoming more likely to use DWP-style wording. Given this, the need for people to be believed and treated in a friendly, supportive way was emphasised by respondents and event participants.

“The portrayal of the harsh critical system where someone judges you to be okay when you live with pain constantly and your doctors agree, yet an unqualified person has the final say on whether or not you are sick or ill enough.” – Individual

A dislike of sharing personal information or a perception that the process was intrusive was also raised by some. A few raised that they felt the questions were not relevant or a fear of being investigated.

Negative experiences of previous system

Several felt negative experiences of applying for Personal Independence Payment, or hearing about these, may impact willingness to apply for Adult Disability Payment. Similarly, being unsuccessful when applying for Personal Independence Payment was felt to have the potential to put people off applying for Adult Disability Payment.

Form or process is too long

The length of the application form and the decision-making process were reasons given by several as to why people might not apply for Adult Disability Payment, a view also raised across engagement events. Most comments were about the application form being too long, though a few commented on the overall process being too long, such as taking too long to reach a decision or that phone interviews could be lengthy.

Fear of being rejected or of losing benefits

Some, including Mental Health Advocacy Project (West Lothian) and #MEAction Scotland, highlighted that a fear of not receiving an award or of losing benefits following an unsuccessful application were reasons why people may not apply for Adult Disability Payment.

Other issues

Other varied reasons why people may not apply for Adult Disability Payment were given by several, including a perceived lack of consistency in decision-making or that the process was not fair, not wanting to be labelled, not wanting “government interference” in their lives, difficulties obtaining supporting information and a perception that many Adult Disability Payment applications were not being awarded.

Q1F. What do you think the Scottish Government could do to help people who know Adult Disability Payment exists but are unsure if they should apply or might be unwilling to apply?

Q2. Do you think there is anything else that could be done to encourage people to apply for Adult Disability Payment?

Almost seven in ten consultation respondents answered Q1F and over four fifths Q2. While the emphasis of the questions was slightly different, there was significant overlap in respondents’ comments to both questions. To avoid repetition, the analysis of both questions has been combined below.

Individualised support to help people to apply

By far the most prevalent theme in responses to Q2 was the need to help people to apply through encouragement or support. Referring to, and accessing, one-to-one support through a support agency was the most prevalent theme in response to Q1F, and this point was raised repeatedly across engagement events, where support to complete a form was recommended, with the suggestion that people should not try to complete it alone.

Specific points included that it was felt more engagement was needed with “those who are at risk”, to make it easier for a third party to represent a person, or that specialised mentors or health professionals could encourage people to apply. However, some organisational representatives at engagement events highlighted the resource required in support organisations to assist people effectively.

“Personally, I filled out the first part online, and then didn't fill out the second part until someone from SSS called me to ask if I was planning on filling it out, answered my questions, extended my deadline, and offered me an appointment with someone to support me with filling it out, so do keep doing that! It was very effective.” - Individual

Help people understand they could be eligible

Suggestions were made by several consultation respondents on ways Adult Disability Payment could be promoted to those who might not realise they are eligible. Most commonly, easy ways to get initial information and ask questions were called for, such as through a helpline, information points or email help. Suggested messages for communication included counteracting stigma with positive messages, listing the eligibility criteria clearly on advertisements and highlighting the benefits of receiving Adult Disability Payment. A few felt that reducing waiting times, on the phone for instance, would help encourage applications.

Improve the process

At both questions some gave suggestions for improving the application process as a way to encourage Adult Disability Payment applications. Suggestions included shortening the form or making it less complex, allowing people with life-long conditions to automatically qualify, giving people access to their own medical notes and having better communication with applicants. Providing updates as people move through the decision-making process was also suggested at multiple events.

Ensure the approach treats people fairly

Comments on the approach taken by Social Security Scotland staff were given by some. Recommendations were made that staff should treat people with dignity and respect and that staff should believe what applicants say. One suggested a lived experience panel could be part of the decision-making process to allow better understanding of the nature of disability and its impact. Another suggested:

“Training in the condition for assessors. If people with ME/CFS [Myalgic Encephalomyelitis or chronic fatigue syndrome] knew that assessors understood the condition and are therefore more likely to make a fairer assessment, it would help reassure that there is less chance of stigma or rejection.” – #MEAction Scotland

Some also felt that reassuring people they would be treated with dignity and respect would encourage people to apply. This view was supported by participants at engagement events who suggested promotional literature could signpost to the Social Security Charter or highlight there is no face-to-face assessment, to counter perceptions that Adult Disability Payment is like Personal Independence Payment.

Other discussion at engagement events

At engagement events, the need to ensure Adult Disability Payment is accessible to people whose condition or situation could impact their ability to apply was highlighted. Participants’ suggestions for improvements included providing information in alternative formats including Easy Read, video and audio versions, or ensuring the application process was accessible to seldom-heard groups and those who experience digital exclusion.

Other suggestions included making it clear that people who work can qualify, that applying for Adult Disability Payment does not affect other benefits, that it is not means-tested or taxable, and that the online application form includes a ‘save and return’ function.

The name of the benefit was considered in some engagement events, with mixed views on whether to retain Adult Disability Payment or to replace it with something emphasising the payment’s potential to provide support, such as Adult Independence Payment (similar to Personal Independence Payment for PIP).

Call for Evidence

The Social Security Scotland Charter specifically states that the Scottish Government will ensure as many people as possible get the benefits they are entitled to. This includes making a particular effort to reach people who are most likely to be excluded.

Q1A. Thinking about take-up of Adult Disability Payment for seldom-heard groups, what evidence exists about levels of awareness and barriers to awareness of Adult Disability Payment amongst seldom-heard groups?

Several respondents to the call for evidence either provided more detail in their responses to the first few questions of the call for evidence, or were more likely to answer the earlier questions than later questions. For this reason, the analysis below goes into more detail than other later sections of the call for evidence analysis. Reflecting the level of detail and evidence provided in some responses, it is not possible to present all the information submitted within this report. Full responses to the consultation, where permission for publication was granted, can be found on the Scottish Government’s consultation website.

General lack of awareness

Around three quarters of call for evidence respondents commented at Q1A. Several described a general lack of awareness of Adult Disability Payment among their stakeholders and clients. For example, Homeless Network Scotland provided examples of their clients who were neurodiverse and struggling to understand which benefits might be most appropriate for them. MECOPP (Minority Ethnic Carers of People Project) and Feniks noted that their clients who did not speak English were less aware of Adult Disability Payment or more confused about their eligibility due to receiving information through word of mouth rather than official channels.

Considered ineligible

A misconception that certain groups are not entitled to Adult Disability Payment was a barrier to greater awareness of the benefit for some. This was particularly highlighted by organisations who worked with people with cancer and those who were terminally ill.

“Whilst some respondents were not aware of ADP and other benefits available to them, the majority believed that they would not be eligible for benefits, and in many cases, this was because they did not think that their cancer diagnosis qualified them for assistance. This demonstrates not only a failure in awareness and communications around the benefits available to everyone, but also in ensuring specific groups are aware that they, because of their specific condition, are eligible to claim them.” - Young Lives vs Cancer

Stigma

The stigma of receiving benefits and therefore the need to raise awareness of and learn more about the support available was mentioned by some, including SAMH (Scottish Association for Mental Health) and Homeless Network Scotland. The Coalition for Racial Equality and Rights (CRER) and MECOPP highlighted evidence that showed connection between cultural beliefs and uptake of social security benefits.

“A Money & Pension Service report highlighted that some potential applicants who were aware and otherwise able to apply were reluctant to due to their cultural beliefs, and stigma about being ‘on benefits’. Similarly, within the Eurofound review, potential recipients were keen to highlight they could ‘manage’ and in the Young Carer interim evaluation, it was noted that there was some ‘initial reluctance’, where carers felt they should not receive the payment as there were others who would need the money more. The increased impact of benefits stigmatisation within some cultures was noted by a number of reports, with many feeling it was charity, only for the most in need rather than a right or entitlement. Within this vein, some respondents believed any payments should only be spent on the absolute essentials, so would instead prefer to have less income to spend and live freely. This stigma can be exacerbated by past negative experiences with public service staff, adding to feelings of exclusion.” - Coalition for Racial Equality and Rights

“In some cultures, discussing disability or seeking financial benefit might carry stigma or be seen as undesirable, further discouraging them from applying.” - MECOPP

Awareness levels among specific groups

LGBT+ Welfare and Assets Project at the University of Stirling cited their own research with 110 people who applied for benefits in the last eight years, alongside a statistical analysis on the proportion of people identifying as LGB who applied for/received benefits.

“We also found that ADP benefited from a "good glow" being associated with the Scottish Government. The Government was seen (at the time) as being LGBT+ friendly and progressive, and thus people believed the system would be. PIP was associated with the Conservative UK Government and their attacks on LGBT+ people. Our fieldwork was carried out in 2021/22.” - LGBT+ Welfare and Assets Project at the University of Stirling

Throughout the call for evidence, the Coalition for Racial Equality and Rights noted that there was not enough available evidence or research detailing the experiences of uptake of social security benefits among BME (Black and Minority Ethnic) communities, noting this was also highlighted in recent ScotCen research commissioned by the Scottish Government. While they cite Social Security Scotland’s client equality and diversity data release for June 2021-March 2023, which would suggest Adult Disability Payment uptake for BME communities is lower than average, that data is complicated by the transfer of the payment from DWP to Social Security Scotland during that period.

“Unfortunately, there is a significant lack of information on the experiences of Black minority ethnic (BME) people who are applying for ADP, as well as on BME people with disabilities in Scotland and their access to benefits. CRER continues to highlight the issues with evidence in Scotland and advocate for better data collection by ethnicity, higher standards for public sector data, and proactive plans to fill these gaps in data and evidence. The lack of data severely limits the ability to implement effective policy and accurately evaluate its impact.” - The Coalition for Racial Equality and Rights

Q1B. Thinking about take-up of Adult Disability Payment for seldom-heard groups, what evidence exists about the particular barriers to application facing people in specific seldom-heard groups?

Accessibility

Around three quarters of call for evidence respondents commented at Q1B. Several noted that they were aware of accessibility issues causing barriers to applying. A few spoke of language and literacy barriers, particularly for those who did not speak English or who were recent immigrants to the UK; this was also noted as a concern at engagement events. A few others highlighted bureaucratic confusion and no access to easy read documents for some who have neurological or memory conditions or those with learning difficulties or learning disabilities. LGBT+ Welfare and Assets Project at the University of Stirling gave evidence of a research participant receiving communication that was addressed using incorrect pronouns, which they felt were exclusionary.

Digital exclusion was also mentioned by some who noted that there were many in seldom-heard groups who did not own or had trouble accessing computers. For example, One Parent Families Scotland highlighted that many single parents do not use computers but rely on their mobile phones for digital connection. They suggest that due to “the levels of benefit income, even having enough credit in their phone can be impossible and will delay or prevent them applying.”

Complex process

Perceptions of the different stages of the Adult Disability Payment application process, from a long and overly complex form to multiple approval stages to a long waiting time for an award, were mentioned by some as a barrier to applying.

“Those in seldom-heard groups have likely overcome many barriers in their lives already, so it is unlikely to be one particular barrier that prevents them from applying, but ‘barrier exhaustion’. They may have found it difficult to get information about benefits in the past; not known how to apply; needed support to apply but none was available; felt embarrassed or stigmatised; and are additionally already dealing with so much that they just don’t have the energy to fight for something they are entitled to.” – Age Scotland

The Communication Inclusion People noted the perceived complexity of the process was particularly challenging for those experiencing communication disadvantage. Young Lives vs Cancer, Feniks and Alzheimer Scotland all mentioned that the complexity of the process made it almost impossible to apply for Adult Disability Payment when a person was very ill, whether mental or physical, acute or terminal.

“Furthermore, a cancer diagnosis brings with it immediate financial and emotional challenges that can last for years. Given this, many patients are focused on their treatment and health, rather than applying for financial assistance that may take months to be approved. They may also not be well enough to engage effectively in the application process. Efforts to streamline the process of applying for ADP and expedite the approval of applications must be made and better support patients such as young people with cancer.” - Young Lives vs Cancer

Provision of assistance

Acknowledging the difficulties often faced by applicants, including those in seldom-heard groups, some respondents noted that barriers to accessing support, whether provided by the third sector or pre-application assistance provided by Social Security Scotland, could also be a barrier to applying. Social isolation was mentioned by MECOPP as both a barrier to awareness and a barrier to applying. Organisations such as Cerebral Palsy Scotland noted that those who do not have relationships with GPs may struggle with awareness or to get the supporting information necessary to receive an award.

Previous negative experiences

A small number highlighted that their clients’ negative or traumatic experiences with a Personal Independence Payment application under the DWP made them hesitant to apply for Adult Disability Payment. Respondents suggested more communication emphasising the distinction between the two would be beneficial.

Q2A/B. In relation to Adult Disability Payment, can you provide evidence about any initiatives or activities that have measurably increased awareness of take-up?

Three fifths of call for evidence respondents commented at this question. While many provided anecdotal descriptions of activities and initiatives that they feel have increased uptake, respondents did not cite research or data that consider the issue on a larger scale.

Promotion

Some highlighted the importance of increased promotion. VoiceAbility highlighted an increased interest in Adult Disability Payment evident through monitoring of their social media channels, which showed high levels of engagement with the material about Adult Disability Payment. MS Society Scotland also noted increased take-up due to promotion of the benefit on their social media channels.

The Coalition for Racial Equality and Rights highlighted research from the Poverty and Inequality Commission that used unique communication strategies to target priority groups:

“The communications addressed universal barriers but were tailored with specific messages for each audience. The evaluation of the campaign found that 77% of parents in the priority family groups recognised the campaign and 76% of them acted due to seeing the campaign. We don’t know if there was any variation in impact for minority ethnic or BME families, but the results are encouraging for targeted SSS communications. Messaging seeking to target BME groups should be tailored to the needs and cultures of different communities, rather than producing a generic BME alternative.” - Coalition for Racial Equality and Rights

Reaffirming the importance of addressing the needs of different groups, the Communication Inclusion People noted the success of the Inclusive Communication Action Plan 2022-2025, which they worked on with Social Security Scotland.

Parkinson's UK Scotland heard from stakeholders that they purposefully timed their new applications or change of circumstances forms to ensure they were considered under Adult Disability Payment rather than Personal Independence Payment. They suggest that emphasising the differences between the two payments and that the payment has now been devolved has worked positively to increase take-up.

Outreach through healthcare settings

Evidence provided by a few respondents emphasised the importance of outreach through GP practices and other healthcare settings, either through signage or direct outreach.

“During the financial year 2023-24, 6,280 people received advice from a CAB adviser embedded in a health care setting, from an adviser working on an outreach basis in a health setting or having been formally referred to a CAB from a health setting. The potential value of this approach in relation to reach, take-up and awareness is indicated by looking at what advice is given: 37% of the advice provided to this group of people concerned both components of Adult Disability Payment. The equivalent figure for the network as a whole is 26%.” - Citizens Advice Scotland Social Policy

Third sector organisations

The capacity of third-sector organisations to increase the take-up of Adult Disability Payment was mentioned by some. A few noted Adult Disability Payment applications could follow on from their clients having welfare benefits checks, a service offered by many third-sector support organisations. A few others suggested that they provided trusted advice to their clients, something that allowed them to speak about Adult Disability Payment and other benefits. FAIR Ltd. noted that their staff are well trained, which allows them to provide advice and information services that will support take-up. They, along with Epilepsy Scotland, expressed a view that more people would be willing to apply for Adult Disability Payment if Social Security Scotland provided a trusted organisation list or accreditation for agencies that assist people with the application, re-determination and appeals process.

Q3. Can you provide specific examples of the factors that affect whether someone chooses to apply for Adult Disability Payment or chooses not to apply?

Application form

The vast majority of call for evidence respondents answered Q3. Many provided examples or anecdotal evidence of when the length or complexity of the Adult Disability Payment application form made their clients decide not to apply for Adult Disability Payment without assistance. A few others mentioned that some clients had trouble identifying or articulating their daily struggles.

“Interviewees articulated the often overwhelming complexity of the ADP journey, and the challenges of providing the depth of information required.” - Citizens Advice Scotland Social Policy

“The length of the application continues to be a factor. Although the application form is well written and presented, it is extremely long and takes a huge amount of time to complete. As mentioned in our response to the prior question, previous negative experiences when applying for benefits are also a factor impacting on choosing to apply again for something new.” – Age Scotland

Not only is it the length of the form that can pose a challenge, but some mention that clients find it difficult to represent their experiences accurately in the application form. Communication Inclusion People also suggested that the application does not allow people to use their preferred or comfortable method of communicating when completing the form. Views on the application form are detailed more fully in Chapter 5.

“When a benefit check with one of our Social Welfare Specialists identifies an individual is eligible to claim ADP, we have a 100% take up record of them going on to make a claim - with the guidance and support of one of our specialists. After completing and submitting the ADP application form, nearly every person has reported they would not have been able to cope with their claim without our expert help and support. In our experience, contact with the Multiple System Atrophy Trust Social Welfare Service and subsequent discussion about possible entitlement then provides the person with confidence and assurance that a claim is justified and appropriate. Without this, the claim might not be made at all. This is because we have expert awareness of how MSA affects people and how this dovetails with ADP entitlement.” - Multiple System Atrophy Trust

Previous negative experiences

Several respondents cited evidence from stakeholders of fear or mistrust of the benefits system due to negative experiences during an application for Disability Living Allowance (DLA) or Personal Independence Payment. A few emphasised that people expressed a new willingness to apply for Adult Disability Payment due to their understanding it had been devolved to the Scottish Government.

A few respondents spoke about the difficulty their stakeholders faced when describing their limitations or ‘worst day’ examples of their conditions. Other noted that a fear those descriptions may not be believed was also stopping people from applying.

“Another contributing factor to whether people apply for ADP or not is the fear of not being believed or being rejected. While we have generally had positive feedback on the differences between ADP and PIP there is still some reticence to believe the systems are different." – MS Society Scotland

Stigma

Stigma was mentioned as a factor that impacts a person’s decision to apply for Adult Disability Payment. Points raised here have been included in the analysis of Q1A above.

Impact on mental wellbeing

Considering the complexity of the Adult Disability Payment application form and process and previous negative experiences when applying for benefits payments, some respondents highlighted that clients or stakeholders had decided not to apply for Adult Disability Payment because of the potential negative impact it could have on their mental wellbeing.

“Some women didn’t believe they could survive the ADP application process. They described how living with a debilitating mental health condition was exhausting.” - University of the West of Scotland

Difficulty gathering supporting information

Some cited a concern among potential applicants that they would not be able to prove their disability or health condition. This was either due to an application form they felt did not represent their condition or a lack of interaction with medical services, which they felt may make gathering supporting information difficult^[5].

“Difficulties in proving disability can also be a factor in choosing whether or not to apply. For some individuals, particularly those with "invisible" disabilities (e.g., mental health issues, chronic pain, or fluctuating conditions), proving their disability to meet the criteria for ADP can be difficult The requirement for medical evidence or documentation can discourage them from applying, especially if their condition isn't well-documented by healthcare professionals or there is a long waiting list or there is no availability to meet their doctors.” - MECOPP

“In addition, we know that a lack of evidence of eligibility due to delays or lack of action in diagnoses via healthcare systems (which is often experienced in mental healthcare) can impact on choices to apply for ADP” – Age Scotland

Lack of support and assistance

Having support from family, health professionals and community or third-sector advocates was an important factor in encouraging application for Adult Disability Payment, according to a few respondents. This included getting support with the application form, but also advice about the different stages of the Adult Disability Payment application process.