Adult Disability Payment: Consultation on the Mobility Component

Section 3: Support for people with fluctuating conditions

Background

A Social Security Scotland case manager decides for each activity which of the descriptors apply to the person and, therefore, how many points they receive.

The impact of many health conditions and disabilities can change or fluctuate, with both “good” and “bad” days. A case manager should therefore consider that a person’s ability to carry out mobility activities may change daily.

As a result, a person may satisfy several different descriptors for an activity at different times.

The eligibility criteria

For people with a fluctuating condition, the descriptor that applies for a particular activity is established as follows:

Table 4 The fluctuating conditions criteria

If one descriptor is satisfied on over 50% of days

That descriptor

If two or more descriptors are each satisfied on over 50% of days

The descriptor that scores the higher or highest number of points

If no descriptor is satisfied on over 50% of days, but two or more descriptors when added together amount to more than 50% of days

The descriptor which is satisfied for the greater or greatest proportion of days, or

Where both or all descriptors are satisfied for the same proportion, the descriptor which scores the highest number of points

Our consultation and engagement with stakeholders highlighted the importance of considering fluctuating conditions. This is particularly relevant to both the “moving around” and “planning and following journeys” activities, as we recognise that many conditions fluctuate on a daily or weekly basis.

The next set of questions are about the planning and following journeys activity which is described in section 3 of the consultation paper. They cover:

• Clarity of the criteria for fluctuating conditions
• Evidence about the criteria for fluctuating conditions
• Changes to the application form about fluctuating conditions
• Changes to how we make decisions about fluctuating conditions
• Other opportunities to change the criteria for fluctuating conditions

11. Do you agree or disagree that the criteria for fluctuating conditions is easy to understand?

Agree / Disagree / Don’t know

11(a). Please give reasons for your answer, outlining which parts you think are easy or difficult to understand and why.

11(b). How could we make the fluctuating conditions criteria easier to understand?

Evidence

Research findings

Some people with fluctuating conditions have expressed views that the eligibility criteria for variable or fluctuating conditions could be improved as part of PIP^[28]. How the eligibility criteria applies to people with fluctuating conditions was highlighted as something that is potentially difficult to understand. However, some people also felt that the eligibility criteria for fluctuating conditions conveyed enough of the sense intended behind the criteria. It was suggested that the notion of an “average” day was unhelpful for the most severely disabled people.

We have also heard positive feedback from academics that the improved approach to the application and decision-making processes within Adult Disability Payment would introduce important improvements. This included having more experienced practitioners and starting from a position of trust in what a person tells us about their condition. Notwithstanding this, some stakeholders viewed retaining the PIP eligibility criteria as having an inequitable impact on people with fluctuating conditions^[29].

Consultation findings

During the Consultation on Disability Assistance[30], some respondents suggested assessing a person on an “average” day or considering symptoms on a “worst” rather than “best” day. This was suggested as a better way of fully capturing a complete picture of the impact of a person’s disability or condition, instead of relying on the ability to complete an activity 50% of the time.

Examples of specific conditions that respondents thought were likely to fluctuate included Multiple Sclerosis, Lupus and Ehlers-Danlos Syndrome. Suggestions for incorporating these conditions more effectively included taking an average day as the analysis point or considering symptoms on a “worst” day rather than “best” day.

The recent research with Experience Panel members asked how people felt about the guidance on how the descriptors should apply to people with fluctuating conditions. Findings from this research have informed our approach to this consultation and will be published later in 2023.

Previous Experience Panels research also highlighted some of the challenges that people with fluctuating conditions face with regard to PIP assessments and criteria:

“The forms were written in such a way that it doesn’t allow for fluctuating or multiple conditions…”^[31]

“He said “I’d appreciate if you just answered the questions I was asking, because that’s not on the form.” I’m a person, I’m a human and I don’t necessarily fit into the boxes on the form.”^[32]

This feedback has informed the Scottish Government’s approach – particularly in relation to the challenges for people whose disabilities or conditions do not easily match up with criteria. When developing Adult Disability Payment, we have worked to ensure that assessors are suitably qualified and experienced with the conditions they are assessing and have the guidance and support necessary to make decisions.

Advice from the Disability and Carer Benefits Expert Advisory Group

The Disability and Carer Benefits Expert Advisory Group provided advice on Adult Disability Payment on 20 December 2019[33]. It did not recommend providing condition-specific activities or descriptors, noting:

“We do not believe creating new activities or descriptors for specific conditions is the best way to do this, as there is a distinct possibility this will create an unhelpful precedent. We believe it is impossible to accommodate all distinct conditions and people with conditions that are excluded would feel especially alienated.”

Whilst the advice of the Group was not unanimous, it made some suggestions about possible ways to make the eligibility criteria more flexible. For example:

• implementing a more discretionary “safety net” regulation for people who don’t score the minimum number of points,
• applying different thresholds for different conditions in a way similar to Industrial Injuries Disablement Benefit,
• allowing an averaging of points, for example: if someone scores 24 points in a bad week and 6 points on a good week, and a bad week happen on average 1 week in four, they would average 10.5 points, and
• returning to the more flexible DLA test as it better captured people who do not fit neatly into the more rigid PIP framework.

12. Are there any other issues with the fluctuating conditions criteria that we have not captured above?

Yes / No / Don’t know

12(a). If you said “yes”, what other issues with the fluctuating conditions criteria do you think need to be considered?

12(b). In your view, what are the positive aspects of the fluctuating conditions criteria that we have not captured above?

Improvements made to Adult Disability Payment

The application form

The Scottish Government has sought to address these concerns by providing a legal definition of what it means to carry out an activity to an acceptable standard^[34], so that it considers the impact on the person, which can include factors such as pain and fatigue^[35]. A definition is not provided for the PIP equivalent.

We have also amended the definition of what it means to complete an activity safely, to make clear that the person’s ability to move must be undertaken in a way that is unlikely to cause harm.

Further improvements to the application form include clear guidance on how the eligibility criteria is applied. This helps to support people in providing relevant information, guided by the reliability criteria, about how they feel after completing an activity and how long the impact lasts for.

13. How effective do you think the fluctuating conditions section of the application form is at helping us understand the needs of people with fluctuating conditions?

Please only answer in relation to the changes to the fluctuating conditions section of the application form that are outlined on page 37 in the consultation paper.

Very effective / effective / somewhat effective / not very effective / not effective at all

Please give reasons for your answer

How we make decisions

We have introduced bespoke consultation durations to allow us to properly consider things like fluctuating conditions. Unlike UK Government assessments, a consultation is not a standard duration. Instead, a consultation only covers the areas of the application which are relevant to the person and on which the case manager has requested further information to make a decision. People therefore are not asked unnecessary or repeated questions, nor are they rushed into giving an account of how completing an activity makes them feel. Practitioners take the time necessary to fully understand the impacts of a disability and/or health condition on a person.

The practitioner discusses with the person the full impact of completing an activity and of their disability or health condition on them.

Guidance is available for case managers to ensure that environmental, cultural and social factors are taken into account. Compared to PIP, this is to ensure a fairer and more consistent application of the eligibility criteria.

14. Thinking about the changes we have made to how we make decisions about fluctuating conditions, what impact do you think this is having on understanding the impact of a person’s fluctuating conditions?

Please only answer in relation to the changes to decision making processes for fluctuating conditions that are outlined on page 38 in the consultation paper.

Significant positive impact / a positive impact / neither positive nor negative / a negative impact / significant negative impact

Please give reasons for your answer

15. If there was an opportunity to change any specific aspects of the fluctuating conditions criteria, what changes would you make (if any)?

Please provide detail about:

• Why you think changes are necessary
• What changes you would suggest
• Could there be any unintended consequences

15(a). If you proposed changes, what positive impacts could these have, and for who?

15(b). If you proposed changes, what negative impacts could these have, and for who?