Adult Disability Payment: Consultation on the Mobility Component

Section 2: The planning and following journeys activity

Background

The purpose of this activity is to consider a person’s ability to plan and follow the route of a journey. To “follow the route of a journey” means for a person to navigate and make their way along a planned route to a planned destination.

This activity is relevant for people whose mobility is affected by mental health, cognitive and sensory impairments, as well as physical problems. Cognitive impairment includes orientation (understanding of where, when and who the person is), attention (including awareness of risk and danger), concentration and memory.

Consideration is given to a person’s ability to:

• plan the route of a journey in advance,
• leave their home and embark on a journey,
• follow the intended route once they leave the home, and
• deal with unexpected changes to the journey should they arise.

Safety risks are also considered including, but not limited to, the following:

• tendency to wander into the road,
• inability to safely cross a road,
• risk of self-harm, and
• symptoms of overwhelming psychological distress.

The eligibility criteria

Depending upon the impact of a person’s disability or condition on their ability to plan and follow journeys, they may score between 0 and 12 points for this activity:

Table 3 The planning and following journeys criteria

a. Can plan and follow the route of a journey unaided.

Points 0

b. Needs the prompting of another person to be able to undertake any journey to avoid overwhelming psychological distress to the individual.

Points 4

c. Cannot plan the route of a journey.

Points 8

d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid.

Points 10

e. Cannot undertake any journey because it would cause overwhelming psychological distress to the individual.

Points 10

f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid.

Points 12

Case managers should consider if the person needs prompting, supervision or assistance from another person to complete the activity, or an assistance dog or orientation aid.

“Prompting” means reminding, encouraging or explaining by another person. This does not have to be in the physical presence of another individual. For example, a person could be prompted by a telephone call from someone else.

“Supervision” means the continuous presence of another person for the purpose of ensuring a person’s safety. The supervision can be in relation to any risk to the individual’s safety, whether or not the risk directly results from carrying out the activity in question.

“Assistance” means physical intervention by another person and does not include speech.

“Assistance dog” means a dog trained to guide or assist a person with a sensory impairment.

“Orientation aids” are specialist aids to assist disabled people in following a route and do not include:

• ordinary satellite navigation systems such as those found in mobile phones,
• maps,
• lists of directions, or
• a symbol cane which may indicate that a person has needs relating to their ability to see, but does not assist them in the orientation of their surroundings.

The next set of questions are about the planning and following journeys activity which is described in section 2 of the consultation paper. They cover:

• Clarity of the planning and following journeys activity criteria
• Evidence about the planning and following journeys activity
• Changes to the planning and following journeys part of the application form
• Changes to how we make decisions about the planning and following journeys
• Other opportunities to change the planning and following journeys activity criteria

6. Do you agree or disagree that the planning and following journeys activity eligibility criteria is easy to understand?

Agree / Disagree / Don’t know

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

6(b). How could we make the planning and following journeys activity eligibility criteria easier to understand?

Evidence on the planning and following journeys activity

Research findings

We know that some stakeholders feel that the focus on overwhelming psychological distress is an overly strict way to measure a person’s ability to plan and follow a journey. The descriptors may also not capture the types of activities that a person would like to do, such as access education, healthcare, or employment.

It has also been suggested to us that using fixed eligibility criteria can make it challenging to assess the ways in which a mental health condition can affect a person’s mobility^[23]. This is often because symptoms may be “episodic” and fluctuate significantly, depending on a range of factors.

We have heard that the activities and descriptors make little allowance for disabled people with mental health conditions, who might face significant barriers when trying to use public transport^[24]. In particular, we heard how some people with a learning disability face considerable discrimination in using public transport safely.

Some people questioned what the difference is between a planned and an unplanned journey, as well as the rationale for making such a distinction in the eligibility criteria. It was also highlighted that people who don’t have the support they need to undertake a journey face difficulty in describing the impact of their disability or condition, as they do not currently undertake any journeys.

Many of the academics we spoke to were positive about the changes to the application and decision-making processes, including how they would impact upon the planning and following journeys activity. The training for practitioners undertaking consultations, particularly in relation to mental health, was welcomed. It was also noted that the eligibility criteria allows for people with a sensory disability to qualify for support.

Consultation findings

During the Consultation on Disability Assistance[25], we asked for views on the mobility component of Adult Disability Payment. Most respondents focused on the processes involved in making decisions, rather than on specific changes to the eligibility criteria.

For example, many responses to that consultation also focused on the need to take better account of the impact of mental health conditions on a person’s physical health. This included reference to conditions such as psychosis, paranoia, depression, allodynia, and anxiety issues.

7. Are there any other issues with the planning and following journeys activity that we have not captured above?

Yes / No / Don’t know

7(a). If you said “yes”, what other issues with the planning and following journeys activity do you think need to be considered?

7(b). In your view, what are the positive aspects of the planning and following journeys activity that we have not captured above?

Improvements made to Adult Disability Payment

The application form

We have made improvements to the application form to address concerns raised about the planning and following journeys activity. The guidance available as part of the application form has been enhanced, so that it is clear what is considered for this activity:

The Adult Disability Payment application form provides guidance about what we mean about planning and following journeys. It includes definitions of undertaking both a familiar and an unfamiliar journey.

A familiar journey would include places in a local area that a person knows, such as a local shop or a friends house.

An unfamiliar journey would include places in a local area that a person has not been to before and needs to plan a route to.

The application form for Adult Disability Payment has also been designed to provide guidance about the difference between planning a journey and following a journey:

We also know that some people do not leave home and may not be able to undertake any journeys. In order to ensure that we collect relevant information, additional guidance is included next to questions on the application form:

8. How effective do you think the planning and following journeys section of the application form is at helping us understand a person’s ability to plan and follow journeys?

Please only answer in relation to the changes to the planning and following journeys section of the application form that are outlined on page 29 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 heard during the Consultation on Disability Assistance[26] about how behavioural observations, as part of PIP assessments of people with mental health conditions, could be inappropriate and stigmatising:

“Behavioural observations such as maintaining good eye contact, whether the individual is sweating, rocking back and forward or fidgeting are inappropriate, as are comments on appearance. The assumption that an individual must be rocking back and forward and dress unconventionally perpetuates the stereotype that individuals with a mental health condition must look and act a certain way (campaigning / advocacy organisation).”

The previous research with Experience Panels also highlighted a lack of understanding when UK Government assessors were assessing how different conditions impact someone’s ability to plan and follow a journey:

“…because I had actually turned up and I was there, she said in my assessment that she didn’t believe my anxiety was so bad (survey respondent)”^[27].

We have therefore removed the Mental State Examination as part of consultations for Adult Disability Payment. The guidance for our case managers also focuses on building a more holistic assessment of the impact of a disability or condition on a person’s ability to plan and follow a journey.

Our consultations are carried out by people who are suitably qualified to do so and employed by Social Security Scotland. Social Security Scotland practitioners have two years’ work experience after having obtained their qualification. People often have multiple conditions and, whilst it is not always possible to exactly match these complex presentations with one practitioner, we have recruited a sufficient number of practitioners with an extensive range of expertise who can support each other.

The role of a practitioner is substantially different to the role of a UK Government assessor. Practitioners are not trained to “assess” people. Instead, they are trained to gather information from people by having conversations with them, and to support case managers with information and advice.

Where a person has a mental health condition or a learning disability or difficulty and a consultation is required, it is carried out by a practitioner with relevant experience. This is intended to address concerns with the current UK Government service around clinicians without a relevant background being involved in undertaking the medical assessments, and that people with a mental health condition were not properly listened to or understood.

9. What impact do you think the changes to how we make decisions on the planning and following journeys activity has on understanding a person’s ability to plan and follow journeys?

Please only answer in relation to the changes to decision making processes for the planning and following journeys activity that are outlined on page 31 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

10. If there was an opportunity to change any specific aspects of the planning and following journeys activity, 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

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

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