Getting the best from PIP assessments
Assessments for Personal Independence Payments are geared towards health problems rather than difficulties in daily living. Liz Tilly and the Building Bridges Research Group carried out a project which showed the importance of having an advocate present during assessments.
The Building Bridges Research Group
is composed of people with learning disabilities based in Sandwell. They are part of Building Bridges Training and have been working together since 2010 doing inclusive research to understand the issues that affect the lives of people with learning disabilities. The group’s previous research had found that living with poverty had a major impact on the group’s social inclusion and their ability to have a full life in the community so increasing their income was a priority.
The PIP research project
Starting in the summer of 2014, three of the group members were supported to make a successful PIP claim and used the experience as a research project so others could learn from their journey. The three have a mild learning disability and live independently and had not previously made a successful claim for DLA or PIP. The aim was to explore how the PIP application process was experienced by the new claimants and how the assessment criteria for receiving the benefit related and compared to their experiences. It also considered the type and level of support the claimants needed.
Personal Independence Payments
Personal Independence Payments (PIP) started to replace Disability Living Allowance (DLA) as the main UK disability welfare benefit in 2013. PIP is awarded to help with some of the extra costs caused by long-term ill health or a disability for people aged 16 to 64. It has two parts: the daily living component and the mobility component. To get the standard rate claimants must score at least 8 points and to get the enhanced rate at least 12. A claimant can receive different rates for each component. For more information see https://www.gov.uk/pip/overview. This means claimants can receive between £21.80 and £139.75 a week, a considerable increase in income for people on Job Seekers Allowance (JSA).
PIP has been controversial due to the long time it takes for a claim to be assessed; an average of 9 to 14 months (The Guardian 17.9.14), the need for claimants to emphasise their impairments and the controversy over the efficiency of the private sector organisations undertaking the assessment. The assessment is considered by many to have a focus on the impact of physical impairment and less on the impact of having a learning disability on coping with independent living.
The assessment
I attended appointments with each person at each step of their claim, i.e. the initial appointment with the Welfare Rights Unit to start the claim and then later at their assessment which took place at the claimant’s home. The assessors were all from a health background rather than a social care background. After the interviews the claimants said they found the assessors’ language level too complex, although one of the assessors had been able to simplify their language during the course of interview.
It was also difficult for the group to recall and accurately give various facts such as names and purpose of medication, partner’s date of birth and length of time living at previous addresses. Ironically, ability to remember these facts related to having a mild learning disability but without this information the claim could not be processed.
Another aspect identified as challenging was being able to give in-depth verbal responses to open questions, such as ‘how does your condition affect your daily life?’ One claimant in particular gave mainly yes or no responses yet it was the in-depth explanation of difficulties in daily life and with mobility that enabled the assessor to attribute vital points.
Scoring points
Many aspects of the assessment related to health issues and physical impairment which weren’t issues for the claimants. The daily living component allocates points for difficulties with specific aspects of daily living. Some of these, such as washing, dressing and eating, did not present difficulties to the claimants. However, they did score points for difficulties in preparing and cooking a hot meal, managing dosage of medication and needing help with budgeting. For the mobility component, points were scored for inability to travel to an unknown place. Our reflections following the assessments were that the rigid assessment questions seemed to simplify daily living and didn’t take into account the broader issues that make life challenging for people with a mild learning disability living independently. For example, all have top-up meters for gas and electric but to keep these topped up needs a range of organisational skills to plan and budget for when this is needed. The assessment doesn’t cover aspects of personal, home and community safety, coping in unfamiliar situations, functional numeracy, coping in a crisis, motivation to implement the skills they have and, increasingly important, digital skills.
Moreover the assessment doesn’t take into consideration the broader independent living skills requiring executive functioning skills: the ability to plan ahead, to think strategically, to self-organise and to prioritise what is urgent and important.
Outcomes of the application
We understood the process could take nine months; however, it only took approximately six months for each person to hear the positive news that they had been successful. Each received back pay from the date they started their claim journey, a considerable one-off back payment. This enabled them to be able to replace larger home items, purchase winter coats and even more luxury items such as a TV and a tablet. They all received the enhanced rate for daily living and the standard rate for mobility, making a substantial increase in their monthly income.
Conclusions
During their assessments the claimants found difficulty in communicating their experiences and challenges of independent living as these were broader than the narrow criteria used. Their difficulties in independent living were also exacerbated by poverty, their motivation for claiming the benefit. They were not claiming for the additional costs of having a disability, or because it was their right, but out of a need to increase their income to pay for essentials and for the costs of social and community activities. These had previously been unaffordable which had increased their social exclusion. The claimants all said that having the appointment in their own homes was important to them as going to a strange place, even with someone supporting them, was stressful.
We hope that, despite the rhetoric that PIP is harder to claim than DLA especially for people with a mild learning disability, more will now apply to claim this benefit and, hopefully, be successful. However, we think that having someone present at the assessments who can be an advocate but also someone who knows the person well and can contribute to explaining the things that makes life challenging is imperative. This also has implications for people with learning disabilities who don’t have access to support or social capital outside their immediate networks, as is the case for many people with a mild learning disability.
Whilst there is a good easy read fact sheet available about PIP on the gov.uk website https://www.gov.uk/government/publications/about-pip-what-it-is-and-how-to-claim-it-easy-read-guide we also think it would be helpful for people to have an accompanying easy read form for people to gather the key information they need in advance of the first stage of the claim, particularly if the person has difficulty remembering personal information, such as previous addresses and dates living at them.
Finally, whilst we recognise that the length of time from first registering to outcome of the claim has become much shorter, all the members of the group feel this should still be significantly reduced.
