This blog reports on the work that was carried out by a group of the Poverty and Inequality Commission’s Experts by Experience Panel on the four main topics of the Scottish Government’s ‘Adult Disability Payment: Review of the mobility component’ consultation.
The Panel have noted its concerns previously about the link between disability and poverty and have taken an interest in issues such as eligibility conditions, access to benefits and the amount of assistance that is provided to disabled people.
|This submission on behalf of the Experts by Experience Panel highlighted key issues including:
Recommendations from the Experts by Experience Panel included:
‘Individuals living with a disability or long term health conditions have to overcome obstacles on a daily basis many people can’t even begin to imagine. Instead of the benefit system being supportive, caring and understanding individuals are let down by badly designed forms and chronic suspicion.’
– Panel Member
Moving around activity
The Panel disagreed that the moving around activity criteria was easy to understand. They believed that the criteria was not written in a way that allows understanding of a disabled person’s daily reality.
The questions used to score points and determine eligibility were felt to be very prescriptive and missed important context. There was thought to be no consideration given in the criteria for the recovery time (which can differ greatly for people) from the exertion of carrying out an activity. Panel members also felt that it was unfair to have a rule of 20 metres, which penalises people that can move even a little over 20 metres.
There was further concerns raised by the Panel around affordability and inequality in gaining mobility support and disabled people being penalised in attempts to reduce their social isolation, being scared to do more for the fear of losing benefits.
The Panel also thought the moving around section of the application form was not very effective for a number of reasons, including the length of the application.
The risk of non-completion of the application due to anxiety or exertion required was feared to be high. Whilst Panel members appreciated the option of third party support, there was a need for greater clarity about the independence of this as well as capacity available to help.
The Panel felt that the changes made so far will make a negative impact as the approach was still too tied to a medical model of disability that focuses on the limitations and weaknesses of disabled people.
Planning and following journeys activity
The Panel disagreed that the Planning and following journeys activity criteria was easy to understand. It focused on if someone could plan and follow a journey and not if they would. It was felt that it did not appreciate the challenges faced by disabled people in planning a journey, where it can only take one part of the journey not to go right for the journey to become impossible and significantly impact upon people’s confidence. Panel members raised a range of issues that can affect travelling confidence, including weather, service interruption and the lack of accessible structures and toilets.
The Panel also highlighted issues around the assumption that support is available to people that appears to be made by decision makers, when this is often not the case in reality. There were also issues related to stigma and discrimination faced by disabled people. It was felt that the criteria did not adequately account for the risk of something happening, including the descriptor not having been updated to account for the Covid pandemic.
Like the moving around activity, as well as highlighting a need for the criteria to be rewritten, there were similar concerns around the application form. And the Panel, whilst appreciating comments on creating a new culture on social security within Social Security Scotland, raised concerns around recruitment from other social security agencies who may have operated under a more punitive culture.
Panel members also raised concerns about the guidance provided on fluctuating conditions, being too complex and having an arbitrary figure of 50%. They felt that the current system was too much like guess work. To improve the current system, it was felt that face to face discussion was important, however due to legacy and trust issues, particularly the perceptions inherited from past negative experiences with other agencies, there were concerns that staff would use these discussions to try to catch individuals out and lower awards. So the process would have to be managed well, with trust being critical.
Whilst Panel members also highlighted the challenges of finding ‘fresh evidence’ that people face, from waiting on a formal diagnosis, a person self-managing thus not seeing a medical professional regularly or due to waiting lists and waiting times.
Panel members felt that a system was needed that was based on compassion, health and wellbeing and the social model of disability. There were issues of trust, with the current system being seen as a system to decline applications, which pushes individuals to others sources and forms of support.
Those with lived experience had to be the at the heart of any new system of disability support. Whilst the system had to be ambitious with a suggestion made for the Independent Review to review best practice around the world and not just in Europe. There were also deep concerns about the gap between the award amounts of Adult Disability Payment and the additional costs incurred of being disabled.
‘If as a society we want to become inclusive and champion equality for all then I’m afraid we have a long way to go. If we refuse to listen and acknowledge people with lived experience the benefit system and application procedures will never change for the better.’
– Panel member
|How the submission was prepared
A Scottish Government official was invited to the Experts by Experience Panel meeting in March 2023, to outline the purpose of the consultation to Panel members.
Following this presentation, the Panel discussed the Adult Disability Payment mobility component in break-out group discussions during a hybrid Panel meeting.
Following this, an invitation for volunteers with direct experience of disability and interest in the subject and wishing to help shape the Panel’s response was sent out. Five volunteers agreed that they would like to be involved in a short working group to prepare the final response.
Following communication of the working group in an online meeting and via e-mails, with the support of the Commission’s secretariat staff a draft response was presented to the Experts by Experience Panel meeting of 18th April 2023 for comment. The full panel agreed the final response.
You can read the full submission by the Experts by Experience Panel working group here
If you would like to know more about the Experts by Experience Panel or this work, please contact Munwar Hussain, Senior Participation Officer on firstname.lastname@example.org