Adult Disability Payment - mobility component: consultation analysis

2. Overarching themes

Across the consultation, many respondents suggested or called for broad improvements to ADP. The main request was for a holistic, person-centred and flexible approach in ADP decision-making and many of the themes evident throughout this report relate to this principal aim. There were frequent calls for the ADP criteria to consider, clarify and include additional aspects of mobility beyond simply the ability to move a certain distance or plan and execute a journey.

Some suggestions were raised repeatedly, regardless of the specific focus of the question asked. These are: moving to a more flexible and holistic approach, ensuring all aspects of mobility are considered, that the criteria should reflect experiences of moving in the built and natural environments, and broadening the eligibility criteria. Concerns were also raised repeatedly that the eligibility criteria are not appropriate for those with fluctuating conditions.

To avoid repetition, we detail these themes below before examining the specific comments on each element of ADP in the following chapters.

A flexible and holistic approach to the eligibility criteria

A prevalent theme across responses was the desire for a flexible, person-centred approach to ADP. Several mentioned the importance of considering each application holistically, including the wider context of clients' lives and circumstances when making a decision. Many felt people do not fit neatly into boxes and noted conditions impact mobility differently between individuals and, often, over time.

The criteria were viewed as overly simplistic by many respondents, who argued that more person-centred and holistic criteria could allow clients to develop a clearer understanding of the criteria and demonstrate how moving around relates to their daily experiences. Respondents did not feel a points system in the mobility component for specific activities was helpful; they preferred a focus on understanding day-to-day living with a disability.

It was repeatedly stressed that 'yes/no' questions were limiting and respondents called for a more person-centred approach to considering how clients move during the day, the pain, fatigue, mental distress of those movements and journeys on following days. They argued such an approach could change how the ADP process speaks about and understands the needs of disabled people; one respondent noted that a flexible approach would "allow for a true picture of mobility issues across a range of complex conditions."

"A more holistic view may be a better approach - what does the condition mean to the person - what does it stop them doing and so on? It doesn't treat people as individuals - a person who scores 7 points needs help yet gets nothing. A person who gets 11 points gets less than someone who gets 12 points and in the case of mobility prevents them getting access to a Motability vehicle. One of the main issues with points-based system is that it doesn't really tell you about the person - you are trying to fit in a myriad of people into boxes." – Individual

"A shift from the fixation on numerical distance walked, to a more person-centred approach of how someone moves (whether aided / assisted or independently and what the impact of moving around is on each individual) would yield a more accurate representation of someone's level of disability." - Neurological Alliance of Scotland

"Mobility isn't just how far you can walk, it's about the freedom to do things independently… A more holistic approach is need remembering not every person is the same. Mobility should be based on the individual person and their overall disability challenges"- National Carer Organisations

A few others suggest that a greater understanding of specific conditions by practitioners and case managers in Social Security Scotland will allow for a more accurate understanding of their needs in the application process. It was argued that a more flexible, individualised approach would avoid disparities caused by the universal application of an arbitrary points system. Event attendees highlighted the importance of assistance and advocacy if there was a switch to open questions, as some clients may not know what to include or how to best represent their condition.

In relation to the planning and following journeys activity, ENABLE Scotland explained how a holistic approach could be put into practice. They argue for a more binary approach to the planning and following journeys activity.

"An award for the standard rate could be made if the person can manage local journeys that are known to them but unable to manage journeys to unfamiliar areas. An award of the enhanced rate could be made for those unable to manage local journeys. This would mean that decision-makers/tribunals do not need to differentiate between planning/following a journey but instead could take a more holistic approach basing their decision on the impact of the claimant's disability in carrying out all aspects of a journey. The exception to this would be an award of the enhanced element for those unable to use public transport even when assisted by another person/guide dog etc to a familiar or unfamiliar area. This exception would seek to protect those who would, in real terms have the highest transport costs as taxis/car use may be required as public transport is not an option." – ENABLE Scotland

In responses to Q16, which considered alternatives to a points-based system, respondents gave examples of situations not currently considered, but that could be impacted by mobility. For instance, a joint response from three organisations noted the current exclusion of social interactions, household cleaning, and food shopping. A few suggested incorporating more information from the client's perspective would allow a greater focus on what people need to participate fully in civic life.

"In our experience, people often use the benefit to pay for cleaners. This can be a key issue for people with mental health conditions and can also be a good indication of the severity of a condition. Hoarding can have an impact on people's ability to access their kitchen, bathroom etc. but there is no scope for that within the criteria." - The Action Group & VOCAL & Grapevine at Lothian Centre for Inclusive Living

Considering all impacts of mobility

A common overarching theme was a call to include a range of additional impacts reflecting clients' lived experiences of before, during and after moving around. Respondents suggested considering:

• The planning needed, both physical and mental, to prepare for moving around.
• Lingering physical and mental impacts, including pain and fatigue associated with moving around or journeys not going as planned, that can last for days, weeks or longer or have a delayed onset.
• That clients may need to pace themselves because the impact of moving could be long-lasting.
• People may avoid certain journeys to ensure they do not feel the impacts of those movements in the hours, days or weeks that follow.
• How often the distance can be repeated safely alongside everyday activities.

"It also focuses HEAVILY on physical ability rather than limitations set by pain. I can't move at all without being in pain, but I can still walk for miles - it just means I'm often in bed for a few days afterwards and I can't handle the other parts of my life. What would I put to indicate that?" – Individual

Others mentioned that consideration should be given to hidden disabilities where moving is possible, but the effect of moving can range from pain and fatigue to dizziness, breathlessness and abdominal pain. As noted in the introduction, this is an example of where it is unclear, whether participants were referring to these considerations based on their experiences of PIP or in response to clarifications to the ADP application guidance.

"The consultation document also notes that "whilst a person may be able to stand and move a few metres, they may not be able to achieve all the things they want to in life due to their mobility needs". We agree that the moving around activity does not take account of the impact of walking the stated distance in terms of exertion or concentration, and the limits this may then place on their ability to partake of the activity to which they are journeying, or to enjoy activities later that same day because of consequent exhaustion." – Law Society of Scotland

Criteria should reflect experiences of moving in the built and natural environments

Several respondents argued that the criteria judge movement in isolation from the reality of moving around and should consider the complexity of the circumstances people encounter when moving.

While the ADP criteria is currently identical to PIP, several suggested situations which should also be considered within the ADP criteria. These included:

• Walking on a gradient or slope, as well as on stairs and a variety of surfaces.
• How people move around their house functionally, i.e. they can walk to the kitchen, but cannot bend over to put things in the oven.
• The purpose of travel and subsequent difficulties faced at destination, such as the need for aids in both hands for long walks to corner shops, making the use of hands while shopping impossible.
• The needs of those with hidden disabilities who may be unable to travel from home due to the availability of specialised supports and resources, such as toilets or resting places.
• Road closures or roadworks that complicate familiar journeys.
• Navigable access at destinations, such as ramps, lifts, and braille signs.
• Differences between rural and urban environments.
• Access to necessary community facilities, such as shops, schools and healthcare.
• Navigating environmental hazards like crowds or furniture.
• Weather.
• The impact of certain medicines on movement.

"The distance doesn't matter as much as the environment. Things that should be considered more are ability to walk uphill or downhill, taking stairs and other issues with moving around." – Individual

Broader criteria

Some respondents provided examples of where they believed the criteria were too narrow. These included comments about the need to consider mental health conditions, conditions that require the surrender of a driving license, and conditions where movement in general is affected, not just mobility, such as getting from sitting to standing. Some suggested broadening the criteria to include the experiences of those with fluctuating conditions and mental health concerns would make the moving around activity criteria more inclusive.

Others suggested that the criteria include a wider range of aids, such as mobility suits, mobile phone map applications, while another suggested that the cost of some aids needed to move around should be considered.

Fluctuating conditions

Throughout the consultation, respondents commented on the lack of representation for people with fluctuating or variable conditions. This included consideration within the moving around activity as well as the planning and following journeys activity. In Chapter 4 we provide further analysis of responses to questions on the fluctuating conditions criteria, including the '50% rule' and feedback on the 'good', 'average' and 'bad day' language.

However, in response to other consultation questions, it was often unclear if respondents were sharing their direct experiences of the moving around and planning and following journey criteria in relation to their condition, or making more general comments about the need for ADP to better support people with fluctuating conditions.

"Our view is that people with conditions that cause fatigue or chronic fatigue or conditions which are fluctuating like MS and epilepsy, cannot accurately answer the questions about the moving around element of the adult disability payment form. People with ME may well be able to walk 20 metres one day, but one of the features of ME is post-exertional malaise. This means that having walked 20 metres, someone with ME may well then be incapacitated for hours, weeks, or longer. Many people with progressive neurological conditions also suffer from constant fatigue which often worsens as the day goes on. This means that they may be able to walk 20 metres at the start of the day, but this would be impossible later on in the day. Furthermore, the moving around criteria is hard to define for conditions like epilepsy where mobility is affected by whether or not you have a seizure, but you are at risk of a seizure 100% of the time." - Neurological Alliance of Scotland

Respondents frequently criticised the idea of an average day measurement as not representative of, or applicable to, specific conditions. A few respondents and some engagement event attendees argued that certain conditions, even if mobility is limited on one or two days a week, the limitations to mobility and the cost of aids and supports required on those days still need to be considered. Others pointed out that conditions like epilepsy or anxiety can affect mobility all the time.