Social Security Experience Panels: attendance allowance discovery

Applying for Attendance Allowance

Even if a person is aware of Attendance Allowance, it can sometimes take a long time before they feel they are able to submit an application. Some focus group participants told us they had to take time to come to terms with their support needs before they could submit the form. Filling in the form forced them to 'confront their new reality' and accept that they could not go about their lives as they used to do.

Reasons for applying

Many participants had applied on behalf of other people, such as their partner or parents:

'I applied on behalf of my elderly mother whose general health was getting worse. As a former benefits advisor, I had more knowledge than average.'

'Application was for my husband who has been diagnosed with Parkinsons…'

'I applied on behalf of my mum and dad. Before they died, they both required a package of care and we wanted to top up the package to support them to remain in their own home for as long as possible.'

Overall, the findings suggest a relatively poor level of awareness of Attendance Allowance existed amongst participants and many did not apply until the health condition of the claimant resulted in them seeing a professional who recommended they apply.

The application form

Participants acquired an Attendance Allowance application form from a number of sources, including:

• Being posted out to them from DWP;
• Given to them by a carer, friend or relative; and
• Collecting a form themselves from a JobCentre.

Some participants told us that obtaining an application form from a JobCentre was a difficult experience. The negative stereotypes and media portrayal of benefit claimants made them reluctant to be associated with the system.

Participants described the application form as 'complex' and 'confusing'. Some participants told us that the long and repetitive nature of the form was 'daunting' and put them off applying.

'The form (and quesitons asked) is too long and repetitive; this in itself is enough to stop some folks applying.'

'The form is confusing for elderly people and seems to ask the same questions in a different format. It can be very repetitive.'

The perceived repetitive nature of the form made some participants feel as if they had to justify themselves over and over again:

'Also in a degenerative illness, with no hope of improvement, [you] should not have to justify yourself over and over again.'

Many participants said that they had to seek support to complete the form from third party organisations or family members.

'I needed information from CAB, wouldn't have completed otherwise.'

'There's no way my parents could complete the form themseves. I completed a bit then read back to them what I had put.'

Even participants who were used to completing forms, or had experience in this area, told us that they found the form difficult:

'I am a retired bank manager and was used to filling in forms, but the application form for Attendance Allowance would have beaten me if I had not had help […]. The length of the form is prohibitive and the questions asked seemed to be repetitive.'

A small number of participants who had previously worked for DWP and were familiar with such paperwork found the form more manageable.

Despite the length of the form, participants told us that they still didn't feel they had a chance to say what they wanted to say. Some participants felt that the form missed out important questions:

'The questions don't enquire about how you deal with daily tasks, only eating, washing and dressing. Nothing about how you get your medication, shopping, etc. Nothing about getting to a doctor or hospital appointments.'

'Some of the content seems to be missing, e.g. no account is taken of the ability or lack of, of being able to cook for oneself. It asks "can you feed yourself", not "can you prepare food".'

Other participants felt that the specificity of the questions limited their ability to describe the impact their health condition had on their lives:

The CAB helped me to complete the form as it was lengthy and didn't cover what I wanted to say.'

'The form concentrates on care needs but no clear part on disabilities due to mental health (such as dementia) and as mobility is not a consideration.'

This 'specific' nature of the questions was particuarly problematic if the form was being completed on behalf of someone else. Some participants told us they felt as if the application was 'intrusive', especially where they were completing the form on behalf of a family member:

'The questions were very intrusive and hard to complete because I am my husband's appointee. As I answered the questions truthfully, I felt I was betraying his confidence, writing down the reality of his most personal upsets. I felt terrible. […] It made me feel very disloyal…'

This was especially the case where the applicant had to describe or answer particuarly personal questions, such as toileting needs and the support needed.

Answering the questions from the point of view of a family member was also perceived as challenging:

'I was completing the form on behalf of my husband so I had to answer the questions from his point of view, which was not always easy.'

Some participants felt it was difficult to describe their worst days in such detail:

'It's difficult for some people, like me, to be negative about the limitations of a chronic, incurable condition. However we are advised to state what life is like on our worst days.'

When asked how to improve the form, many participants said it should be shorter, easier to understand and less repetitive. Some suggested that an improved form should have more generalised questions to allow applicants to talk about their condition in their own terms.

'More generalised questions about support needed. Not concentrating on specific actions.'

Others wanted the form to be more easily accessible, for example online:

'Easier to access the form and shorten the length of it.'

It was felt that if the application form was offered online, it was still essential to ensure that paper or face to face application was still available so as not to exclude elderly applicants or those uncomfortable using a computer:

'Would be useful to be able to complete it [application form] online as well. Given the age group, essential that help is offered to complete the form face to face if this is requested.'

Others told us that better guidance on how to complete the form would be useful. Many participants were unclear as to whether they should answer as to how their condition was at the present time, or if they should describe their condition at its worst:

'Clarity in the instructions could be helpful.'

Participants told us that they hoped the benefit would be easier to understand when it transferred to Social Security Scotland.

'Hopefully the Scottish version of AA will be easier to understand and claim.'

Supporting evidence

We asked participants whether they sent in supporting evidence with their application form. Over two thirds of survey respondents said they had sent in evidence. Respondents told us they sent in a range of evidence, including:

• Evidence from their GP, consultant or other health professional;
• Evidence from a social worker or care worker; and
• A list of medicines they were taking.

In the future, the agency may be able to gather some evidence to support Attendance Allowance applications for clients. This might include a list of medicines they are taking. To do this, data would be have to be shared between healthcare providers and the agency.

Participants were mostly happy for this data sharing to take place, so long as the information was restricted to healthcare professionals:

'I would be fine with it only being seen by health professionals.'

Some participants highlighted that many applicants would not have recent interactions with the health service as their health condition had reached a stage of being managed rather than treated:

'For instance, people with Osteoarthritus do not attend the Rheumatology department and only see a doctor when pain or depression meds require a top up. Many people with OA and related MSK ^[1]conditions do not see any health professionals as they think they "just have to get on with it".'

Contact with DWP

We wanted to understand if participants had been contacted by the Department for Work and Pensions as part of their application. Almost two thirds of survey respondents had been contacted by DWP, as had many focus group participants.

Participants gave varying reasons for the contact, including:

• Confirming the award or to notify the applicant they were successful;
• Enquiring to resolve an issue on the application form; and
• Requesting further information about the condition.

Few participants commented on their interaction with DWP, however a small number spoke positively of their interaction:

'DWP were very helpful. My mother's condition was changing rapidly during the several weeks from starting the application to submitting it, such that it became necessary for me to be a DWP appointee. DWP were very helpful in advising on how to arrange this.'

'I am aware of the complexity of the governing legislation, and consequently appreciate the time and skill required to assess the application. Nevertheless, I was treated (relatively) fairly.'

Other participants had more negative views, describing the contact as 'intimidating'. Some participants felt that letters from DWP were 'implicitly threatening' and they caused additional anxiety in what was already a difficult time in their lives.

The letters themselves were seen to be 'complex' and it was felt that a large portion of the letters' text did not apply to the recipients. It was suggested that tailoring the letters to the claimant's circumstances would increase understanding and make them easier to read.

Other potential improvements

A small number of participants suggested other improvements to the benefit they would like to see. One participant suggested the benefit should be better linked to other potential services, such as blue badges:

'Link up AA with other support, e.g. blue badges. In severe cases of mobility, a named carer can apply for a discounted mobility scheme car / scooter / wheelchair.'