Devolved disability benefits evaluation: research

4. Experiences of completing the application

Introduction

This chapter explores clients' and formal representatives' experiences of completing the ADP application while receiving CDP. We discuss application methods (online and paper) before exploring individuals' views of their application experiences, the challenges involved, and the importance of support from Social Security Scotland and other organisations for clients and formal representatives during the application process.

Method of application

Over two-thirds of clients and formal representatives who took part in the survey applied online (69%, 55), while 30% (24) completed the application on paper (Figure 4.1).

All clients and formal representatives who took part in a follow-up interview, except one, completed the application online. These interviewees reflected on the benefits of this method, with the most common theme being the ease, convenience and speed of an online application compared to paper.

"[I did it online] just for ease really… Just to go online, get it done and send it away, and there's no paperwork hanging around." (client/formal representative)

A few highlighted the ability to save and return to sections as a positive aspect of the online application form. Other benefits, each identified by one interviewee, included the option to collaborate on the form with their parent on different devices and the removal of the worry that the form might go missing in the post.

"The online application was so easy because you could upload information, save that section and go back to the next bit. I felt the whole process was really professional, how it was set up." (client/formal representative)

However, some other interviewees identified difficulties with the online application. A few noted they did not have a copy of their submission and would like an option to download a copy of their responses when the form is submitted.

"The problem with that is you don't have a copy of it." (client/formal representative)

A small number recounted technical difficulties. One, for example, could not submit the application from their home, with a message saying the form had timed out, and sought support from a third sector organisation. Another spoke of difficulties related to file size limits for supporting documents.

The one interviewee who completed a paper application said this was the preference of the worker from the support organisation who helped them complete the application. This person was concerned that the paper form could go missing in the post and would prefer to complete the application online to reduce the risk of the form failing to reach Social Security Scotland.

Experiences of the application

Overall, clients had mixed views of how easy the application process was. While 30% (24) described the process as very easy or easy, 24% (19) said it was difficult or very difficult, and 43% (34) felt it was neither easy nor difficult (Figure 4.2).

However, a large proportion (69%, 55) described their experience of applying for ADP while receiving CDP as very good or good overall. A smaller proportion (15%, 12) felt it was poor or very poor, and 16% (13) said it was neither good nor poor (Figure 4.3).

Similarly, nearly two-thirds (64%, 7) of support organisations who responded to the survey reported their clients' experiences were very good or good overall, and 36% (4) said they were neither good nor poor. None summarised it as poor or very poor.

These are positive findings and most feedback provided by clients and formal representatives was favourable. In general, interviewees outlined a straightforward application process with support available where required.

"The application seemed much more straightforward than the books that were in previous years… Absolutely no problems whatsoever." (client/formal representative)

"It was quite straightforward… quite simple." (client/formal representative)

"In general, I found the whole process as actually OK. Anyone I spoke to regarding it was quite helpful, so I wouldn't have anything negative to say about the process or anything." (client/formal representative)

Support organisations also gave positive feedback. One survey respondent (10%) had observed an improved experience of the CDP to ADP journey as a result of all the policy changes implemented by the Scottish Government and 80% (8) expect there to be an improvement. Similarly, 30% (3) have observed reduced anxiety and uncertainty among clients and 50% (5) expect anxiety and uncertainty to decline, while 30% (3) have observed reduced barriers to applying for ADP and 50% (5) expect there to be reduced barriers.

However, this was explored further with clients and formal representatives in the survey and interviews and feedback was not entirely positive. Large proportions of survey respondents agreed or strongly agreed they felt anxious (65%, 51) and/or uncertain (57%, 43) when applying for ADP. In addition, a relatively small proportion of clients and formal representatives who responded to the survey (32%, 25) agreed or strongly agreed they felt in control of their benefits while applying for ADP.

"I found it quite overwhelming… I find stuff like that quite difficult, like the writing and knowing how to format stuff and just making sure that I include everything that was relevant to be included. It's just not my strong suit at all." (client/formal representative)

"I find it very confusing and complex." (client/formal representative)

"I was worried the award would be reduced. And it has been." (client/formal representative)

"It was worrying how long it will take." (client/formal representative)

Support organisations agreed the process can be intimidating.

"The paper form for ADP is 107 pages long. Despite the fact much of it is explanatory it's a very intimidating document to tackle without expert assistance." (support organisation)

"The ADP form is a big one so a bit intimidating for some clients to complete." (support organisation)

Concerns and challenges

Concerns and challenges reported by clients and formal representatives centred on:

• Anxiety about processing times.
• A need for more practical support with the application.
• Difficulties in providing supporting information.
• Worries about having to repeat the application in a few years.
• Uncertainty about the level of information to provide.
• Generic and repetitive questions.

Anxiety about processing times

The most common cause of anxiety was uncertainty about processing times and when the client would hear the outcome of their application. Several clients and formal representatives commented on this.

"Every day, I'm constantly saying, 'has there been any mail?' and I just find it's a little bit anxiety provoking." (client/formal representative)

Some interviewees suggested giving clients an estimate of processing times when they submit their application, and there were also calls for Social Security Scotland to provide regular update to clients about the progress of their application and when they can expect to receive their determination. Support organisation staff also mentioned this would be helpful. Social Security Scotland has recently begun sending applicants an SMS text message when their application is received and at key points as it moves through the decision-making process. However, this service began after the clients and formal representatives who took part in our research had applied and none had experienced it.

"Maybe they could put in something like, 'it's likely to take this amount of time and if you haven't heard by [a date], you can contact us' because I don't know how long this is meant to take." (client/formal representative)

"I definitely think keep people updated, even if it's just 'we're still processing the form'. Just tell us what's going on because you submit these forms, and then you wait for seven to 12 months, and you don't know what's happening [or] if you've done something wrong. It's pretty traumatic, to be honest… I need to know what's happening, when it's happening and I get very stressed and very upset if I don't. It's not nice just to be left in the dark like that." (client/formal representative)

"The big thing was the lack of communication because it took so long. There wasn't any indication that it was going to take four to six months. So you had no idea… when the payments are going to start again, that's a bit of an issue. So there was no information at all, but there's no regular feedback to say your application has progressed to the next stage or whatever. There's just no communication at all." (client/formal representative)

Need for more practical support to complete the application

Two-fifths (43%, 34) of clients and formal representatives who responded to the survey said they felt supported through the process. Interviewees provided positive feedback about the support provided by Social Security Scotland, local authorities and third sector organisations, which we outline later in this chapter.

However, 27% (21) of survey respondents did not feel supported through the process.

Many clients and formal representatives reported that more practical support to complete the application is needed, and this could help to reduce anxiety. Just over half of clients and formal representatives who completed the survey (51%, 40) advocated for this. These individuals did not necessarily feel they needed support but suspected that clients who are less comfortable with digital technology or without family or friends to help may need assistance to complete the application form. They suggested support is required with the technicalities of completing the form online and understanding the questions and types of information to include with the application.

"When I did the child disability one, I actually did an online meeting with somebody from Social Security Scotland and they went through it with me, and I think that sort of thing for somebody filling out the first time or if they're not familiar with it, I think that's quite a good thing. You know, or even maybe give examples of the sort of way they want the answers made out, you know, things like that, maybe just give examples. It's just because sometimes it can be quite daunting for people if they're not used to doing forms and things." (client/formal representative)

"The form to apply for ADP was quite overwhelming. I felt capable to complete it. However, I think some may find it very difficult without more support." (client/formal representative)

Some emphasised the importance of making people more aware of the availability of the support that Social Security Scotland and other organisations can provide. This is further highlighted by the 13% of survey respondents (10) who said they did not receive help with their application because they did not know where to find support.

"Market it a bit more about the [Social Security Scotland] people that can come round to your house and help with the application… I'm not sure if people know that that's an option." (client/formal representative)

"Making sure that everyone who is applying has support to manage to carry out the application if they need to. I think that would be something that should probably be re-sent out. Just because maybe people need to be reminded that the option is there. Just because it is a big task. Luckily, I had support from my mum to do it, but not everyone does." (client/formal representative)

Providing supporting information

Social Security Scotland asks ADP applicants to provide one piece of supporting information from a professional when they apply. Alternatively, applicants can ask Social Security Scotland to gather this information on their behalf. This does not have to be 'proof' of a diagnosis: people can be eligible for Social Security Scotland benefits without a formal diagnosis.

However, if supporting information is not available (for example, where individuals have disengaged from any support services due to their condition), Social Security Scotland can make an award without supporting information if they meet the criteria.

Most clients and formal representatives who completed the survey (59%, 46) felt the amount of information they had to provide with the application was appropriate, but nearly a fifth (19%, 15) thought it was not.

Some interviewees reflected on the time and effort involved in gathering supporting information. This can be especially challenging for people with mental health issues or other conditions that can make engaging with services challenging. It is also difficult for people with long-term or lifelong conditions who have irregular contact with medical professionals after diagnosis, so they do not possess updated supporting information related to their needs other than what has been submitted with previous applications.

"Many autistic people have extreme anxiety. And the anxiety is so much that even attempting to phone a doctor to seek support is impossible." (client/formal representative)

"The main part really is that you have to get the same information off the school teachers again and go back and get doctors' reports, and sometimes you don't see health professionals for a few years with a certain condition. So, we're trying to find that information for them [Social Security Scotland] again." (client/formal representative)

One interviewee described having to pay a fee for their GP to provide supporting information. Social Security Scotland cannot reimburse fees but they can pay the fee if it collects the information on behalf of the applicant.

"The GP charged £60 [for supporting information to submit with the ADP application]. I think the payments to GPs should be scrapped." (client/formal representative)

Support organisations also commented on difficulties around providing supporting information.

"Where a CDP client needs school-age evidence such as diagnosis for autism or letters from teachers, this can be difficult or stressful to obtain for their ADP application." (support organisation)

Case study 2 includes an example of an applicant who commented on the challenges of gathering supporting information (Appendix 4).

Worries about having to repeat the application in a few years

Some clients and formal representatives expressed frustration that they will have to undergo the stress of completing another application when the ADP is due for review in a few years. Most of these clients and formal representatives had received a successful determination, one had yet to apply for ADP and one was waiting for a determination. These people argued that some clients with long-term or lifelong conditions that are unlikely to improve should be given an indefinite ADP award or be allowed to provide a brief update rather than a full application at the time of review (for example, case study 3 in Appendix 4). Social Security Scotland does not ask clients to complete the full application form again at the time of review. Rather, case managers consider existing information where relevant and use previous decisions to avoid asking unnecessary questions.^[5] However, clients and formal representatives are not always aware of this.

"I was surprised that [Social Security Scotland] only gave us two years before we have to do it again. So that was a disappointment, that we're having to go through the process again so quickly. Now I'm assuming next time around… they might just let you update your application online as opposed to starting again, and tell them if anything's changed as opposed to starting it all again… then that's no problem to do it every two years. But if you're going to have to start from scratch again and do another kind of seven or eight hours of data input, and find all your evidence again, and upload it all again, that I think is a bit unwieldy." (client/formal representative)

A few also argued that people with conditions that are unlikely to improve should not have to complete a full ADP application when moving from CDP. However, eligibility criteria for CDP and ADP are different, and applicants, unless terminally ill, will need to apply for ADP.

"My son, his situation is never going to get any better, and his situation will never get worse, so someone like him should actually just move through these processes without even being asked a question. It should just be… at a certain age, you are triggered to move from CDP to ADP without anything being checked… It almost feels there is a category of claimants who shouldn't have to go through the process again." (client/formal representative)

"If you're swapping from Child Disability Payment to Adult Disability Payment and the person involved does have a lifelong condition, the process should be more streamlined." (client/formal representative)

Uncertainty about the level of information to provide

Another theme related to uncertainty about the level of information to provide with the application. Clients said they were unsure how much detail was required, and formal representatives felt responsible for adequately communicating the needs of the young person they represent without providing too much information. Clients and formal representatives who took part in the research would welcome more guidance on this.

"When you're trying to fill these forms in, you're doing it on behalf of your child, so you're trying to make sure you're putting everything that they feel on a bit of paper. You're trying to get them to be heard. It's not for you, it's for them… [My son] has these urges that he has to have something repetitive - is that something I should be writing down… is it relevant or not relevant, what do I put down?" (client/formal representative)

"It's quite difficult to answer some of the questions when it's about your own experience. It's sometimes hard to do it without playing it down." (client/formal representative)

"I was unsure about how the forms would be assessed. We live with our everyday, and it is sometimes difficult to realise quite how much we juggle everything to meet the needs of our son. I did not know how he would measure against the levels and boundaries that are in the system in order to make judgements on level of payment… The worry was that I was going to put the right stuff in to make sure my son gets the help he needs." (client/formal representative)

Generic and repetitive questions

Some clients and formal representatives criticised aspects of the questions in the application form. One issue is that clients and formal representatives found it challenging to communicate the extent of their needs or those of the young person they represent because some of the questions assume some level of ability.

"My son has severe and complex needs, and for some of the questions, it just wasn't possible to get across the level of his disability." (client/formal representative)

"It's a little bit frustrating in the form though because I feel like there's maybe some aspects of it where you can't really explain… I think some of the questions could be a bit more open." (client/formal representative)

One client explained that their condition fluctuates and is different day to day, so it was difficult to answer some of the questions that seemed to assume the condition was the same all the time.

"It's quite varied, how it affects me from day to day. It's not going to be the same every single day. Whereas that is how the form is laid out, it's for someone who has something that's going to affect their life in exactly the same way every single day." (client/formal representative)

One survey respondent suggested providing different application forms for physical disabilities, and developmental and psychological conditions.

A few clients and formal representatives commented that some of the questions were repetitive.

"I sometimes felt like I was repeating myself quite a lot." (client/formal representative)

"You have to repeat yourself a lot and you just feel a bit silly." (client/formal representative)

One would have liked a question to indicate they were completing the form as an formal representative to avoid stating that repeatedly in responses to individual questions.

The importance of support from Social Security Scotland and other organisations

The final section of this chapter explores the importance of support from Social Security Scotland in assisting clients and formal representatives with the application.

Just over a quarter of survey respondents (28%, 24) said they received information and advice from Social Security Scotland or other organisations. Of the 24, 58% (14) received general one-to-one or group advice and information, 42% (10) received written information and 17% (4) received advocacy support including help to liaise with Social Security Scotland.

Similarly, nearly a quarter (24%, 19) received help with their application from Social Security Scotland or another organisation, while 64% (51) reported they did not need any help.^[6]

Social Security Scotland support

Some clients and formal representatives commented on how helpful Social Security Scotland support was in helping them understand the process and the information they had to provide. Examples of home visits from Social Security Scotland were especially appreciated. Case studies 2 and 4 in Appendix 4 provide examples of applicants who appreciated Social Security Scotland's support.

"What was really helpful was he asked me questions and… that was really helpful. (client/formal representative)

"A [Social Security Scotland officer] came out to the house… that was nice having somebody come out and explain to you face to face what's actually happening. They've been absolutely amazing, any queries, even the online chat rooms, they're always great, they're always able to tell you anything." (client/formal representative)

A few support organisation respondents also commented on the value of Social Security Scotland support.

"Clients are confused about the process, the letters are long-winded and not clear. It is only when I have helped them complete the ADP form and given them more information that they have told me they now understand." (support organisation)

"Social Security Scotland has made the process easier via local delivery and third sector support with forms and contacting GPs to obtain supporting information." (support organisation)

Research participants from Social Security Scotland provided positive feedback about the support, training and guidance they receive to help them assist clients and formal representatives.

In general, clients and formal representatives commented favourably about their relationship with and trust in Social Security Scotland. Many survey respondents (71%, 55) agreed they were treated with dignity, fairness and respect.

"The general experience seems to be better than the DLA and Personal Independence Payment (PIP) experience in terms of it doesn't feel like it's an automatic rejection; there is due consideration, you're not being asked to jump through hoops if you've completed it properly… I just got a straight award for my son." (client/formal representative)

However, it is also important to note that a few interviewees identified difficulties contacting Social Security Scotland, with examples of long delays in speaking to an advisor on the telephone and web chat helplines.

"After 40 minutes, I gave up. I didn't have the patience that day for a 40-minute phone call. I've got a heavy caring role, and I just couldn't afford the time." (client/formal representative)

Support delivered by other organisations

A few clients and formal representatives spoke about the value of support from local authority staff and third sector organisations. This includes explaining the process and providing practical help in completing the application.

"[A worker from a third sector organisation] helped me complete the form online. Because obviously, it's quite a lengthy form. She filled it out far better than I could." (client/formal representative)

"The most helpful part was our local social worker came round, spoke to me, explained what was going to happen and advised me how long it would take and when we should apply… [The application forms] are always big intimidating times, but they take a while, and you work through them and understand them as best you can. But I do find that having somebody on hand to whom you can ask a question is good. So our local social work people have always been very supportive… if people haven't got that level of support, then they might be in trouble." (client/formal representative)

"[Staff from the third sector organisation] help us fill out forms and stuff. So I just go in with them, and I've got my laptop, and I'll do it and they'll help me." (client/formal representative)

Friends and family members

A few also explained the importance of family members' support in completing and submitting the form. There was a concern that people who do not have family support might find it difficult to understand what information to provide and how to submit the form, especially if they are doing it online. In particular, a few formal representatives were concerned that people with needs similar to the young person they represent would be unable to complete the application without family support.

Differences in experience based on areas of deprivation

Survey responses indicate there may be a link between deprivation and individuals' experience of the application. Just over a third (36%, 4) of client and formal representative survey respondents who live in an area classified as belonging to the most deprived quintile of the SIMD rated their overall experience of the application as good or very good, compared to 100% (6) in quintile 5 (the least deprived quintile). Similarly, 36% (4) in SIMD 1 and 18% (2) in SIMD 2 understood their options about when to apply, compared with 100% (6) in SIMD 5.

The reasons for this are unclear from the survey responses, and no clear trends in qualitative themes emerged from the interviews based on deprivation. We should note that this is based on a small sample, particularly as we do not have SIMD details for 43% of survey respondents, but is perhaps worth further exploration in future research.

Comparisons of DWP and Social Security Scotland

Although not a focus of this research, some interviewees commented on their experience with Social Security Scotland compared with DWP. Some reflected favourably on Social Security Scotland's approach, describing communication as clearer, the application process as more straightforward, and staff as more polite.

"The DWP letters were four pages long and by the end you've kind of lost the will to live, but the Social Security Scotland paperwork seems to be straight to the point and quite informative." (client/formal representative)

"I phoned up Social Security Scotland for help. People were just really helpful, which was, I have to say, not the case when I used to ring the DWP. So for me, that was like a breath of fresh air. And also the form… the difficulty with the DWP form was it was so detailed and so huge." (client/formal representative)

On the other hand, however, one interviewee described the DWP's process for handling complexities related to their son's attendance at a residential school as more straightforward than Social Security Scotland's, and another felt that the determination information that DWP sent was more easily understandable than Social Security Scotland's.

It is important to note, however, that this research did not seek to compare clients' and formal representatives' experiences with DWP and Social Security Scotland. These examples provide snapshots of experience rather than a robust comparison of the two organisations.

Chapter summary

Most clients and formal representatives who participated in the research completed the ADP application online. They valued the ease and convenience of this approach, although there were a few technical difficulties.

There was mixed feedback about the application process, but most summarised it favourably. Clients and formal representatives highlighted the importance of support from Social Security Scotland, local authorities, third sector organisations, and family members in helping them to complete the application.

However, there is also evidence that many clients and formal representatives felt anxious and uncertain during the application process because of the length and complexity of the form and worry about when they will receive their determination.

The main causes of anxiety relate to processing times, a need for more practical support with the application, difficulties in providing supporting information, worries about having to repeat the application in a few years, uncertainty about the level of information to provide, and generic and repetitive questions.

While a level of anxiety and uncertainty is perhaps inevitable with application processes related to benefits that provide important financial assistance for disabled people and their families, Chapter 6 reflects further on these findings and suggests areas for Social Security Scotland to consider to reduce clients' and formal representatives' anxiety and uncertainty.