Social Security Experience Panels: attendance allowance discovery visual summary

Social Security Experience Panels: Attendance Allowance Discovery Visual Summary

Background

The Scottish Government are becoming responsible for some of the benefits currently delivered by the Department for Work and Pensions (DWP).

DWP

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Social Security Scotland

To prepare for this change, the Scottish Government set up the Social Security Experience Panels.

• 2400+ people with experience of benefits = Social Security Experience Panels

Experience Panel members all have experience of claiming at least one of the benefits being devolved to Scotland.

The Scottish Government is working with Experience Panel members to design Scotland's new social security system.

About the research

This report details the findings of the 'Attendance Allowance Discovery' research carried out with Experience Panel members who have experience of Attendance Allowance.

• 5 focus groups + 25+ survey responses^[1]
• The research took place in October to November 2018

The research explored:

• How participants found out about Attendance Allowance
• Participant's experiences of applying for Attendance Allowance
• What participants use their Attendance Allowance payments for
• 35+ participants took part in the research
• 2 Focus group locations

Finding out about Attendance Allowance

We wanted to understand where participants found out about Attendance Allowance.

Participants found out about Attendance Allowance from many different places:

• From family and friends
• From their doctor
• From a charity or support group

Many participants told us they did not know that Attendance Allowance existed, or that it was an option for their particular condition until a professional told them about the benefit.

'I had to give up work to look after my dad full time and I did not know Attendance Allowance existed until five or six years later […] It was only when I registered with my local carer's centre that they pointed it out.'

Some participants told us they felt that many people did not apply for Attendance Allowance as they did not know it existed.

'I think there must be a lot of people who do not claim this benefit because they do not know about it. GPs and other local health staff should be promoting it. Councils should be sending out information when a person receives a package of care.'

When asked how to increase awareness of the benefit, participants suggested:

• Adverts in healthcare venues
• Engaging with charities
• Improved information through support groups

Applying for Attendance Allowance

We asked participants why they decided to apply for Attendance Allowance.

Participants told us they often applied for Attendance Allowance on behalf of a family member:

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

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

Participants acquired an Attendance Allowance application form from different places, such as:

• Through the post from DWP
• Given to them by a carer or relative
• Collected a form from a JobCentre

Some participants told us obtaining an application form was a difficult experience. The negative stereotypes and media portrayal of the social security system made them reluctant to be a part of it.

The application form itself was described as 'complex' and 'confusing'. Some participants felt the form was repetitive and did not let them describe their condition.

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

Some participants told us the form was 'intrusive', especially if they were completing the application form on behalf of someone else.

• Many participants told us they had to get help to complete the form.

Participants told us they wanted the form to be more accessible and easier to complete. To do this, they suggested:

• That people should be able to complete the application form online, with the option to save and take a break if needed.
• That help should be available to complete the form, and that an paper version of the form should also be offered.

Supporting Evidence

We asked participants whether they sent in supporting evidence with their application. Most participants told us they sent in some form of supporting evidence.

We heard that people sent in a range of evidence, including:

• Evidence from their GP
• Evidence from a social worker or care worker
• Lists of medicines they were taking

In the future, Social Security Scotland may be able to gather some of this evidence automatically through data sharing.

Participants were mostly happy for their data to be shared with Social Security Scotland so long as it was only shared with healthcare professionals.

Some participants highlighted that many applicants would not have had recent interactions with their healthcare provider. This was because their medical condition was now at a stage of being managed, rather than treated.

Contact with DWP

We wanted to understand if participants had been contacted by the DWP about their Attendance Allowance application.

Most participants had been contacted by DWP as part of their Attendance Allowance application.

Participants gave different reasons as to why they were contacted by DWP, including:

• Confirming the application was successful
• Asking for more information
• Enquiring about an issue or problem

Some participants felt their interaction with DWP had been positive:

'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 how to arrange this.'

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

The letters were also felt to be 'complex' and it was felt that a large portion of the text in the letters didn't apply to them.

Participants told us tailoring the letter to individual clients would increase their readability and improve client understanding.

Impact of Attendance Allowance

We asked participants what they used Attendance Allowance payments for. Participants told us they used the money to:

• Maintain independence
• Deal with the additional costs of living
• Ensure financial stability

Participants told us that they often used the money to pay for taxis, food or home care:

'To meet the additional costs of everyday life. Poor health means I can't cook, so were [sic] possible I buy in meals, I need to taxi everywhere so that's another cost.

We heard that the extra money 'made life a little easier' as things such as heating became affordable.

Several participants told us that without the benefit, they could not afford to meet their financial commitments:

'We would not survive financially without it since I had to give up work.'

'Without it, I couldn't pay my bills and get a companion bus pass.'

Participants told us they felt the purpose of Attendance Allowance was to help people stay independent and continue to live their lives as best they could:

'To allow a person who requires assistance to remain in their home and function as well as possible and as nearly as possible to those without life limiting conditions.'

'To support people to remain in their own homes, as independently as possible, for as long as possible.'

What's Next?

The Scottish Government will continue to work with the Social Security Experience Panels to design and implement Scotland's new social security system.

The findings from this report will be used to inform the ongoing development and design of Attendance Allowance.