Devolved disability benefits evaluation: research

Appendix 4: Case studies

Case study 1: Karen

• Case transfer
• Unsuccessful applicant - waiting for the outcome of an appeal
• Independent applicant
• Applied less than two months before her 18^th birthday so she could receive CDP for as long as possible.

Karen said the letters from Social Security Scotland made it clear she had to apply for ADP for payments, but it was not clear how to apply. She suggested including more detail in the Social Security Scotland letters to clients would be helpful.

"I think in a lot of them, it was just saying the Child Disability Payment is going to stop. There is the option of applying for the Adult Disability Payment. But then that's all the information it really gave you… It was almost like if you didn't try and find that information yourself, you wouldn't have been able to do it just based on the letter."

Karen thinks it should be clarified that CDP clients will not automatically receive ADP. She had assumed she would receive ADP – and budgeted for leaving home to attend further education based on that assumption – until her mother found out from a social media group that it is not an automatic transfer.

"I went into it very much thinking if I was eligible for the Child Disability Payment I would be eligible for the Adult Disability Payment. So I think maybe having that somewhere so that people know that just because they are eligible for [CDP] doesn't mean necessarily they are going to be [eligible for ADP]. I have moved out for uni, and my budget was based on when I still had the Child Disability Payment. Now that they have stopped, I am having to work extra outwith uni."

Karen described the online application positively, particularly because it allowed her to collaborate with her mother on the application from different devices.

"I think it was good that it was online because it meant both me and my mum worked on it… my mum and I were both able to edit it from our own devices."

However, she noted that it was difficult to answer some of the questions and would have appreciated more guidance.

"The way in which they wanted you to answer wasn't exactly clear… 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."

Karen waited about four months to receive a determination and would have appreciated updates during that time to reduce anxiety.

"There was no contact from Social Security Scotland during that period… [Social Security Scotland should] keep people updated on it. I received nothing for a long time, so I feel like that's probably where a lot of the anxiety came from. You don't even know if they have received it or started looking at it. You don't know at what point your application's at."

Case study 2: Linda

• New applicant
• Not applied yet
• Formal representative.

Linda feels the responsibility of completing the application on her son's behalf and of adequately representing his needs.

"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. It's like you're trying to get them to be heard. It's not for you; it's for them."

Linda has appreciated support from Social Security Scotland in explaining the process, especially during a home visit that involved her son.

"[A Social Security Scotland] officer came out to the house. He actually wanted me out of the room to speak to [my son] himself. Which I thought was amazing because then he's getting to know [my son] himself instead of just looking at a bit of paper so that was good… that was nice having somebody come out and explain to you face to face what's actually happening. And they've been absolutely amazing, any queries, even the online chat rooms, they're always great, they're always able to tell you anything."

Linda described some challenges with completing the application form, including gathering supporting information from professionals.

"It's just a very lengthy process filling in these forms. I think it took me over four days to actually get these forms, and then you've got all the letters for the hospitals and doctors. I mean, it cost quite a lot of money to get them photocopied."

Linda plans to apply a few months before her son's 18^th birthday. She had heard there can be lengthy processing times, so she does not want to risk any payment gaps by waiting until he is 18.

"I know there's quite a lot of waiting lists to wait on for the decision to be made, which is nobody's fault. There's just so many people applying, I think."

Case study 3: Helen

• Case transfer
• Successful applicant
• Formal representative
• Applied at 17, more than two months before her son's 18^th birthday, to receive ADP as soon as possible and to obtain the confirmation required to renew their Motability lease.

Helen suggested that CDP clients with lifelong conditions should not have to apply for ADP.

"My son's situation is never going to get any better. His situation will never get worse, so someone like him should 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… it should just happen without even knowing about it."

She found parts of the application form "soul-destroying", having to describe her son's disability. She felt some of the questions were irrelevant given the severity and complexity of her son's needs.

"He is in the severe and complex category, end of story. I shouldn't then have to go into any more detail than that… it's actually quite soul-destroying at times. You've got to go through and say just how disabled your child or your young adult is… You should almost be able to skip through the questions a lot quicker because you're saying no, he can't do any of that."

It took longer than expected to receive a determination. This caused complications with renewing the family's Motability lease.

"We needed the letter to be able to get the vehicle… In the meantime, we had to extend the lease on our current vehicle because we had no choice… we couldn't progress a new lease without the letter about the ADP."

Helen said the information she received with the determination was helpful but suggested it could have been even more precise.

"I think we had to read it a couple of times to understand it… maybe just a one-pager with an annexe [would have helped]."

Case study 4: Tanya

• New applicant
• Waiting for determination
• Formal representative
• Applied when her son was 17, more than two months before his 18^th birthday, to get it out of the way and avoid any payments gaps.

Tanya appreciated the letters sent by Social Security Scotland to inform her of how and when to apply for ADP.

"I thought they were good because they came in plenty of time… to get everything done… I wasn't actually sure before; I didn't know how long before he turned 18 I would have to do it, so it's quite good that they sent that out so I knew when the time frame was."

She acknowledged the application process can be daunting but felt more confident after her recent experience of applying for CDP.

"It can be a bit daunting filling out the form, but... I'd done the child disability one so I was used to the format and stuff so it wasn't too bad."

Tanya applied as early as possible to get it out of the way and avoid any gaps in payments.

"It was pretty much to get it out of the way because it would just be weighing on my mind to fill it out so I'd just like to get it done."

She reflected on the importance of the practical support she had received with the CDP application. This had helped increase her confidence for the ADP application, and she suggested more practical support could be helpful for other applicants.

"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 for somebody filling it out the first time or if they're not familiar with it, I think that's quite a good thing. Or even maybe give examples of the 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. But I found because I'd done it the first time and I did it online with somebody, that helped a lot and I felt I could manage this time on my own."

Tanya also suggested that Social Security Scotland could reduce uncertainty by advising applicants how long it should take to process their application.

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

Case study 5: Jenny

• Case transfer
• Successful applicant
• Formal representative
• Applied when the client was 16 because they were confident payments would increase and wanted to receive ADP as soon as possible.

Jenny knew from the experience of supporting benefits applicants at her work that they would be likely to receive higher payments with ADP than CDP, and this prompted the family to submit an ADP application as soon as possible.

"That's why I wanted to apply at 16 as soon as they were eligible. We knew that their benefits would increase, and they did."

Jenny praised the online application form.

"The online form was good. And I thought it was better, much better, a million times better than the PIP form… I think the questions are clearer. I think it's not asking for as much stupid information as your PIP form."

However, she encountered a technical issue with the form where she thought the form had been submitted, but, when she phoned a few months later to ask about progress, it transpired Social Security Scotland had not received the application. While this was frustrating, she praised Social Security Scotland's response. An officer came to their house and completed the form online with them.

She endorsed Social Security Scotland's approach to supporting applicants and called for the agency to raise awareness of the availability of one-to-one support for applicants.

"If they market it a bit more about the people that can come round to your house and help with the application... They're lovely. They're friendly. They're good with the kids. They get everything done. They're really competent. They always get back to you... But I'm not sure if people know that that's an option."