Independent Review of Adult Disability Payment (ADP): Analysis of responses to a public consultation and call for evidence

11. Changes in people’s circumstances

This chapter presents the analysis of responses to questions which sought information about people’s experiences of reporting changes in their circumstances. This can include changes to their banking or contact details, their condition, their care need or level of help, and the support they need with their mobility. If changes do occur, clients or their representatives must report it to Social Security Scotland within four weeks.

Key findings

• One third (32%) of consultation respondents had reported a change of circumstance to Social Security Scotland. While two fifths (39%) of those who answered felt they had been treated with dignity, fairness and respect, fewer than one in ten (8%) felt they had received regular updates.
• Only a few respondents provided further details about their experience. Some spoke highly of the assistance they received, although it was not always clear which organisation had provided them with assistance. Shortening response times and better communication about the status of their change of circumstance were suggested as improvements.
• Call for evidence responses also called for better communication and shorter decision periods. Other suggested improvements included clearer guidance on submitting a change of circumstance, providing more details about what needs to be included in the change of circumstance, and integrating all benefit systems to help those applying get the assistance they need with less paperwork.
• Some call for evidence responses expressed concern about accessibility. This included digital exclusion for online forms and language access issues for those whose first language is not English.

Consultation

Q20A. Have you previously reported a change of circumstances for Adult Disability Payment?

One third (32%) of those answering indicated that they have reported a change of circumstances. Almost two thirds (64%) have not and 4% were unsure.

Q20B. If “yes”, do you feel that you were treated with dignity, fairness and respect?

Among those who reported a change in circumstances and answered Q20B, two in five (39%) felt they had been treated well, 22% did not and 39% were unsure.

Q20C. Did you receive regular updates about what was happening?

Among those who reported a change in circumstances and answered Q20C, most (88%) felt they had not received regular updates. Fewer than one in ten (8%) felt they had and 4% were unsure.

Q20D. In your view, what worked well?

Q20E. In your view, worked less well?

Just under a quarter of respondents provided an open comment at Q20D and Q20E.

What worked well with the change of circumstance process

While only a small number of consultation respondents commented, the most prevalent response, mentioned by some, was a positive experience with staff. Not all respondents clarified whether they were referring to Local Delivery Service staff, those contacted by calling a general Social Security Scotland phone number with a question, or Social Security Scotland staff in a consultation. However, they described staff members who were helpful, informative and compassionate. This was also reflected in feedback from participants in engagement events.

Two individuals liked the online process for submitting a change of circumstances.

“The process of submitting a change of circumstances form online is fantastic and by far beats an overload of paperwork and anxiety waiting for phone calls etc.” – Individual

What worked less well with the change of circumstance process

Some respondents were still waiting to hear the outcome of their change of circumstance application and felt the wait was too long. Some mentioned waiting six months while another waited for over a year. A participant at an engagement event thought that having an online portal to submit and track changes of circumstance updates would be helpful.

As with waiting to hear about decisions (Chapter 7 and 10), the lack of communication about the process or status updates was mentioned by some. As with other questions, respondents suggested Social Security Scotland send messages via text, email or post that provide some clarity about the progress of their change of circumstances.

Other comments included:

• Two respondents felt updated supporting information had not been considered in their change of circumstance decision. One wished that their GP had been approached for further information, and another felt that their supporting information letter had been ignored.
• Two were confused about what they could submit alongside their change of circumstances form. One wished to submit supporting information but was not aware if they could. This was also mentioned by a few participants at engagement events.
• One individual felt that they were asked irrelevant and intrusive questions during a telephone consultation to review their change of circumstance. They did not specify who the call was with, whether they were seeking support, or if it was a call to clarify anything submitted in the change of circumstance form.

Call for Evidence

What evidence exists about people’s experiences of notifying Social Security Scotland about a change of circumstances? Can you provide specific examples of:

Q12A. What worked well (if anything)?

Q12B. What could be improved (if anything)?

Two thirds of call for evidence respondents answered each question. Some respondents simply commented that they do not have evidence to support an answer. Because respondents provided positive and negative points at each question, the analysis of responses to both questions has been presented as one below.

Suggested Improvements

Respondents noted that many of the same concerns raised by the stakeholders about getting an initial decision about Adult Disability Payment also applied to the change of circumstances process. This included evidence they had collected from their own stakeholder engagement that showed waiting periods to receive decisions were too long due to delays in processing.

Some again called for better communication during the process. Specific improvements related to change of circumstances included:

• A suggestion to reiterate the need for clients to contact Social Security Scotland in cases where conditions have changed.
• VoiceAbility suggested that older clients be made aware of the “mobility clause” of the change of circumstances form but did not specify why.
• Young Lives vs Cancer recommended integration between benefits systems to ensure that updates to one benefit will update the system for all.
• Alzheimer Scotland recommended providing more details about what needs to be included in the change of circumstances submission.

Multiple System Atrophy Trust, Glasgow City Council, Child Poverty Action Group and Parkinson's UK Scotland all mentioned situations where their clients had been disadvantaged due to confusion during the transition from Personal Independence Payment to Adult Disability Payment. They reported multiple instances where the backdated payments from Social Security Scotland did not match the date of initial contact with DWP. Young Lives vs Cancer suggested better communication between DWP and Social Security Scotland may have minimised the transitional confusion.

“There have been delays and other issues for people whose change of circumstances has triggered the transition from PIP to ADP. In particular, the date of the transition appears to be problematic with the DWP and SSS having some difficulty agreeing on a date. For example, in the case I've previously quoted, the claimant initially contacted the DWP about their change of circumstance in November 2022 and was told the case would be transferred to SSS, who would contact him. Despite numerous phone calls to SSS, nothing progressed until March 2023 when he received a letter advising that his change of circumstance form had not been returned - he'd never received the form. As I stated, once the form was completed and submitted in May 2023, it took until November 2023 for a decision letter to arrive. The claim was increased to the enhanced rates of both daily living and mobility. However, the claim was only backdated to March 2023, despite his initial phone call to notify of a change of circumstance taking place in November 2022. The DWP is adamant they transferred the claim in the correct way and say it's down to SSS, whilst SSS say they can only backdate to March 2023. Neither statutory body will take responsibility for the 4 months in-between.” - Multiple System Atrophy Trust

Accessibility concerns

A few mentioned illiteracy, digital illiteracy, and submissions from those who do not speak English as difficulties with submitting the change of circumstances form.

“Enhanced Support for Non-Digital and Non-English Speakers would be welcome. This would include more accessible, multilingual support services to help individuals who are not proficient in English.” - MECOPP

The Donaldson Trust also noted that the rules and requirements for submitting a change of circumstance form made it difficult for neurodivergent people to self-advocate:

“A neurodivergent person may not be comfortable or willing to disclose information around change in their circumstances, even if it would be advantageous for them to do so, owing to their own interpretation of what ‘change’ means and what the ‘rules’ might mean.” - The Donaldson Trust

Positive experiences

Respondents listed the following stakeholder experiences in describing what worked well about the process of submitting a change of circumstance. These are listed from most to least prevalent:

• Support for online submission, including the main change of circumstances form as well as supporting information.
• Positive experience with telephone assistance, which compared positively to the experience of undergoing an assessment with Personal Independence Payment.
• Good experience with the Local Delivery Service in completing the form.
• Including a “nothing has changed” tick box on the change of circumstances form was suggested as being useful.