Disability and Carer Benefits Expert Advisory Group minutes: November 2021

Attendees and apologies

Present

• Jim McCormick (Chair)
• Tressa Burke (Deputy Chair)
• Ed Pybus
• Jo McLaughlin
• Simon Hodge
• Angela O’Hagan
• Lucinda Godfrey
• Ewan MacDonald
• Bill Scott
• Lucy Mulvagh

Apologies

• Fiona Collie
• Frank Reilly
• Jatin Haria
• Sarah Hammond
• Shaben Begum
• Alan McDevitt

In attendance

• Julie Cruden (Scottish Government)
• Gemma Leishman (Scottish Government)
• Kate Thomson-McDermott (Scottish Government)

Secretariat

• Kirsty Milligan (Scottish Government)
• Connie Penman (Scottish Government)
• David Hilber (Scottish Government)

Items and actions

Welcome from the chair and group business

Jim welcomed everyone to the meeting. The group confirmed there were no declarations of interest. Jim asked the group to contact the Secretariat if there were any errors identified in the body of the previous minutes. He then talked the group though the outstanding actions from that meeting. Action 3 to update the Advice Analysis Tracker had been completed and Jim noted adding details of the updated policy outcomes would be helpful here. Action 6 remained outstanding, Jim suggested bringing this item to Quarterly Meeting 21. Jim reminded the group that Action 7 was due for completion by the end of the year and that sessions with relevant officials would be organised.

Kate explained the staffing changes to the Secretariat which included David becoming a Team Leader in the unit supporting the Disability and Carer Benefit Expert Advisory Group (DACBEAG) secretariat and Connie taking on the full Secretary role.

Kate provided an update on the outstanding advice. She noted that there had been a response from the Minister on Award Reviews. She mentioned that the Minister was considering the advice on Indefinite Awards and the Disability Evaluation Strategy. Kate assured the group that the advice on Child Disability Payment (CDP) to Adult Disability Payment (ADP) migration and Employment Injury Assistance would be with them as soon as possible.

Action one: Notify secretariat if there are any errors in the previous meeting minutes

Action for: Group members

Action by: January 2022

Action two: Update the Advice Analysis Tracker to detail policy outcomes of the group's recommendations

Action for: Secretatiat

Action by: March 2022

Action three: Organise sessions with relevant Scottish Government officials to provide an update on Scottish Carer's Assistance and Carer Additional Person Payment

Action for: Secretariat

Action by: January 2022

Presentation re ADP Decision Report

Jim welcomed officials to present on Decision Making – ADP Decision Report.

Discussion with officials and the group

The group provided the following comments:

• the effort that was put in to the multiple rounds of user testing was recognised and welcomed by the Group
• the report was clearly laid out, but it would be preferred to move away from needs based language to a rights based system

• rather than the focus being on the person’s condition and abilities, the focus should be on people being able to access their rights to independent living and participation in the community

• will the report be made available in accessible formats, such as braille and community languages, and will these versions be made available simultaneously to clients when issued with the plain English version?

• how early in the process with clients be able to indicate a preference for a particular format?

• the example of the decision report provided was easy to understand and a huge improvement on the Department of Work and Pensions (DWP) decision reports
• the 50% rule in decision making ignores the difficulty living with a condition imposes on that person 100% of the time. Using epilepsy as an example, individuals with epilepsy may be excluded from a number of job roles as they may be unable to obtain a driver’s license or operate heavy machinery

• this point will be raised in the longer term advice from the group

• there needs to be sufficient resource in Social Security Scotland (the agency) so that case managers can produce these detailed reports in a timely manner
• in regards to supporting information, if the agency is collecting information on behalf of the client, there has to be consent from the client. The client should be able to check the accuracy of the information before it is used in the decision making without there being a delay in the decision making process

• at what point would the client get to see the evidence gathered on their behalf?
• a decision could be made on a client’s entitlement to benefits using evidence the client has never seen. If the evidence isn’t going to be sent to the client then that needs to be made clear to them
• advisors may either suggest that clients collect evidence themselves or to put in a request to have the information sent to them

• the group raised a number of points around the diversity of experience panels. Is there enough diversity of opinion being used in this testing to ensure that protected characteristics are being represented as well as different socioeconomic backgrounds?
• it is a positive that a form and envelope are included within the determination to request a re-determination
• could the section explaining what to do if you disagree with the decision be moved up to page one?
• if a case manager identifies an unresolved health issue, would they be able to do anything about it?
• Digital Poverty is impacting people and that is disadvantageous. What would a case manager be able to do if they had a client who had digital skills capability but hadn’t had the opportunity to use them?

Officials outlined to the group that there was no substantial update on Medical Guidance to be provided at that time. Jim suggested that if there was a request for feedback from the group before the next quarterly meeting on this, then the secretariat could be contacted to support the organisation of that.

Action four: Provide details of the available accessible formats and when in the process clients can indicate their requirements for these

Action for: Julie Cruden

Action by: January 2022

Action five: Provide details of the protected characteristics represented on the Experience Panels

Action for: Julie Cruden

Action by: January 2022

Action six: Provide and update on Medical Guisance

Action for: Gemma Leishman

Action by: May 2022

Breakout groups advice production

Jim thanked officials for attending and the group reflected on the presentation and discussion with officials. They raised the following questions and comments:

• the words ‘submit’ and’ submission’ could be replaced as they indicate power imbalance
• it is not clear on the draft report that clients have the right to appeal if they disagree with the re-determination decision. It only refers to being able to make an appeal after 56 days if no re-determination decision has been made
• there should be more information on how to make an appeal as the lack of information could lead to a delay in the process
• although the group campaigned to have the agency become responsible for gathering information to support their application, it’s important that claimants should be able to see this information before it is used to make a benefit decision. There could be things the client does not agree with   

• it would be useful to go through the letter in detail. The change in language would make a difference

• the group discussed they would like to understand what other stakeholder groups this decision report example has been shared with as although it had been user tested, users won’t pick up on the same points that representative organisations will

Jim suggested that group members who had capacity should comment on the example report and provide feedback to the Secretary by correspondence for collation and sharing with the relevant officials.

Action seven: Provide comments on the example decision report to the relevant officials

Action for: Secretariat

Action by: December 2021

Action eight: Provide details of other stakeholder groups that have been consulted on the content of the decision report

Action for: Secretariat

Action by: February 2022

Update re Pension Age Disability Payment

Jim welcomed Kate to reflect on the Pension Age Disability Payment item that was first discussed in November 2020. Kate talked through the presentation with group members providing the following comments:

• the group raised that when the Scottish Government (SG) analyse consultation responses they do not account for organisations consulting hundreds of their members to then compile a single consultation response. Therefore, the final percentages do not accurately reflect the number of people consulted
• the group discussed that they would like to understand what effect the English commissioner’s decisions would have on Scottish case law

Mobility component

• any barriers placed on one age group demographic compared to another as a result of their age alone is discriminatory

• the group questioned whether a wider financial analysis would be useful to understand the cost of awarding the mobility component for this benefit versus not awarding the mobility component and the cost of this in other parts of the system, for example, social or health care

• rights based language and terminology should be used with the principle of progressive realisation also adopted

• step changes could be introduced, such as introducing a mobility component that isn’t immediately at the same rate as that of younger people but with progression towards it

• the mobility component links to a wellbeing economy which is based on humanity

• many individuals want a mobility component to allow them access to the Motability scheme. Options towards this would be welcome with any tax implications likely to present a minor cost to the SG

Application process, support and signposting

• it would be useful to understand the protected characteristics represented on the focus groups
• ensuring holistic assessment would help to identify the many pension aged disabled people receiving social care that are entitled to, but currently not in receipt of AA and vice versa

Qualifying period

• the group discussed that they would like the qualifying period to be consistent with the other disability benefits

Alternative accommodation

• ot is not necessarily the case that care needs are being met when people are in care or supported accommodation
• another assumption is that people in care should pay for their accommodation needs and many other things

• people with less lived experience may have agreed with that but often people are not there by choice

• progressive realisation is the rights equivalent of continuous improvement

• if thorough and robust human rights and equalities impact assessments were carried out at the very early stages of policy development, officials would be able to see how successful or not they had been after the policy was implemented

• this is essential because any differential trait of any group has to be closely examined
• the impact assessments as they are currently being done are only picking up protected characteristics but there are other people whose rights are at risk and they are more vulnerable to infringements

• should people of pension age have more flexibility while in hospital around someone still receiving Carer’s Allowance for them?
• there will be a lot of people over pension age on PIP and DLA so the rules need to align

• if rules are changed for AA that would also have to apply to the other benefits

• when payment is suspended for alternative accommodation, would there be a requirement from the agency to review it?

Action nine: Update the group's DAOP advice to include the points raised during the discussions of this meeting

Action for: Secretariat

Action by: May 2022

Group discussion re Motability

Jim reminded the group of the Motability knowledge building session that was held on the 13th October 2021. He suggested that further feedback should be gathered by correspondence to provide a response to officials, Motability and the UK Government.

Action ten: Gather feedback by correspondence to prepare a response to officials, Motability and the UK Government on the proposed Accessible Vehicles and Equipment scheme

Action for Group members

Action by: December 2021

Group discussion re Beyond a Safe and Secure Transfer advice

Jim welcomed Connie to talk about the Beyond Safe and Secure proactive advice.

Connie explained that she had sent out meetings invites to begin discussions to prepare this advice on:

• the purpose of disability and Carer benefits and the medical and social model of disability
• disability and carer benefits and the links to poverty
• other models of disability assistance with comparative international reports
• a review of disability benefits
• practical considerations and smaller changes

Connie outlined the approach that the group will take to draft this advice combining a series of meetings with further input by correspondence.

Connie asked if the group had any comments or questions and they raised the following:

• would there be an opportunity to bring in outside expertise to these discussion?
• if it was not possible for specific members to attend the smaller group discussions could they contribute by correspondence?
• the group discussed that legislatively there is complete devolution of these benefits but with awareness of the fiscal framework. If SG causes additional spend of the UK Government then SG will have to pay that additional money

• the group also discussed beyond a safe and secure transfer being the time for any major policy changes
• the group’s commentary still reflects their ongoing concerns around the quality and consistency of equality impact assessments, the application of equalities analysis and moving to a human rights based approach 
• the fiscal framework is an area where there needs to be internal conversations with officials from SG in regards to funding and budgeting for Social Security
• although not in scope for this group or for the proactive advice, the members in attendance reflected that had all benefits been devolved there would have likely been more of an ability to address wider pressures such as those driven by housing

Kate confirmed officials involved in the fiscal framework work would be invited to speak to the group.

Jim noted that the points raised by members around impact assessments and concerns of a lack of progress in this area should be covered in this piece of advice.

Action eleven: Inform secretariat of any external contacts that members would like to contribute to the proactive advice meetings

Action for Group members

Action by: 24th November

Action twelve: Set up a knowledge building session with Fiscal Frameworks colleagues

Action for: Secretariat

Action by: February 2022

Thanks and close

Action log

• action one: Notify secretariat if there are any errors in the previous meeting minutes. Action for: Group members Action by: January 2022
• action two: Update on the Advice Analysis Tracker to detail policy outcomes of the Group’s recommendations. Action for: Secretariat Action by: March 2022
• action three: Organise sessions with relevant Scottish Government officials to provide an update on Scottish Carer’s Assistance and Carer Additional Person Payment. Action for: Secretariat Action by: January 2022
• action four: Provide details of the available accessible formats and when in the process clients can indicate their requirements for these. Action for: Julie Cruden Action by: January 2022
• action five: Provide details of the protected characteristics represented on the Experience Panels. Action for: Julie Cruden Action by: January 2022
• action six: Provide an update on Medical Guidance. Action for: Gemma Leishman Action by: March 2022
• action seven: Provide comments on the example decision report to the relevant officials. Action for: Secretariat Action by: December 2021
• action eight: Provide details of other stakeholder groups that have been consulted on the content of the decision report. Action for: Secretariat Action by: February 2022
• action nine: Update the Group’s DAOP advice to include the points raised during the discussions of this meeting. Action for: Secretariat Action by: May 2022
• action ten: Gather feedback by correspondence to prepare a response to officials, Motability and the UK Government on the proposed Accessible Vehicles and Equipment scheme. Action for: Group members Action by: December 2021
• action eleven: Inform secretariat of any external contacts that members would like to contribute to the proactive advice meetings. Action for: Group members Action by: 24th November 2021
• action twelve: Set up a knowledge building session with Fiscal Framework colleagues. Action for: Secretariat Action by: February 2022