Disability and Carer Benefits Expert Advisory Group minutes: May 2021

Attendees and apologies

Present

• Jim McCormick (Chair)
• Tressa Burke (Deputy Chair)
• Fiona Collie
• Ed Pybus
• Jo McLaughling
• Lucy Mulvagh
• Carolyn Lochhead
• Bill Scott
• Etienne d'Aboville
• Simon Hodge
• Carol Tannahill

Apologies

• Angela O'Hagan
• Jating Haria
• Sarah Hammond
• Shaben Begum
• Alan McDevitt
• Frnk Reilly
• Lucinda Godfrey
• Ewan MacDonald

In attendance

• Nathan Gale (Scottish Government)
• Kate Dickenson (Scottish Government)
• Jonathan Wright (Scottish Government)

Secretariat

• Shona Forrester 
• Kirsty Milligan

Items and actions

Welcome and group business

Jim welcomed everyone to the meeting and noted that the group formally had a new secretary, Shona Forrester and highlighted that Shona was also the temporary secretary for the Scottish Commission on Social Security (SCoSS) and therefore in the short term the group needs to focus on their core aspects. Jim noted that since the last meeting there had been a Scottish Parliament election and the new Cabinet Secretary was still unknown.

Jim took the group through the action points from the previous meeting. The sessions on Motability hadn’t been arranged yet however, he suggested the group recommit to doing that and keep it on the agenda. He noted that the Pension Age Disability Payment advice (PADP) is still unfinished. Shona confirmed that this advice will be included within the forward plan she is compiling for the group. It was confirmed that the groups advice on Independent Advocacy was shared with The Alliance and Scottish Independent Advocacy Alliance. Jim raised that the chair of SCoSS had requested a meeting with him and he would raise advocacy as a point of discussion at that meeting. It was agreed that the action to arrange a knowledge building session with Social Security Analysis Forecasting and Evaluation should be carried out as it will be helpful for the conversation on beyond safe and secure. Jim noted that the session held in April about this advice will be drafted and would be shared with the group with a plan for small work streams to assist developing the advice. The final action points were on the advice drafted from the previous meeting. Jim noted that these will be the groups first correspondence to the new Cabinet Secretary once they are in post. The group raised that conflicts of interest should be a standing item on the agenda.

Action one: Knowledge building session for Motability to be arranged

Action for: Secretariat

Action by: 2021

Action two: Draft advice on Pension Age Disability Payment

Action for: Secretariat

Action by: 2021

Action three: Create a forward plan for the group

Action for: Secretariat

Action by: 2021

Action four: Discuss Advocacy with SCoSS chair at upcoming meeting

Action for: Jim McCormick

Action by: 2021

Action five: Knowledge building session with SSAFE (analysis and forecasting) to present expenditure forecasts to be arranged

Action for: Secretariat

Action by: 2021

Action six: Conflicts of interest to be included as a standing agenda item going forward

Action for: Secretariat

Action by: 2021

Jim then spoke about the minutes from the previous meeting and asked the group for comments. The group asked for confirmation on whether they will be published and it was confirmed that they will be. It was raised that the group felt some of the language may need softening. The group noted that there could be a risk to having too much detail in the minute which could capture conversations the group wouldn’t be comfortable having published. This includes anecdotal conversations and naming people. It was suggested that there could be a more detailed version for the group and a more distilled version to be released publicly and that it is something the group could keep under review moving forward. Once the advice is finalised that would be the focus of what is in the public domain, the group could decide how much of the private conversation gets published through the minutes especially as they have a good relationship with officials which they wouldn’t want compromised. Jim suggested getting advice on the best way to strike a balance with the minutes.

Action seven: Get advice on the best way to strike a balance with the minutes

Action for: Secretariat

Action by: 2021

Action eight: Amendments to be made to February minutes

Action for: Secretariat

Action by: 2021

Presentation: transition from Child Disability Payment (CDP) to Adult Disability Payment (ADP) process

Jim welcomed officials who talked through the paper on the transition from CDP to ADP Process. Officials noted that they would like the advice by the 31st May. They then asked the group for questions and comments.

Action nine: Draft advice on the transfer from CDP to ADP

Action for: Secretariat

Action by: June 2021

Discussion with officials

The group questioned if human rights laws were considered in drafting the options for the transition process. They also noted that it would be important to include comments made by bodies such as the Committee on Economic Social and Cultural Rights as that could provide useful guiding principles as the principles of dignity, fairness and respect as underpinning taking a rights focussed approach. The group noted that the paper includes some of the Social Security Act principles and that every bit of guidance and all policy papers coming out around Social Security should be reiterating the principles. The group asked officials if the principles not included were not involved in the decision making process. They noted that operational related costs are not referred to in the paper and stated it is important to explicitly reference them if it will be part of the decision.

The group raised the following points:

• it is also important to mention the elements of human rights. The high level of discretion by case managers need to be underpinned by transparency to ensure fairness
• officials were asked to consider the provision of goods and services like social security through availability, accessibility, acceptability and quality and the panel principles. It was noted that there are frameworks available- such as PANEL - to compare all options against these to measure alignment with a rights based approach
• regulations can be a blunt tool but that one of the principles of a rights based approach is putting rights into law. There is a good opportunity to progress more rights based social security law in Scotland. This supports the accountability principle by providing helpful guidance on human rights obligations for Case Managers, and the empowerment principle by providing accessible information for claimants
• another element of a rights based approach is non-discrimination and equality therefore it is important to consider the rights of the separate groups of claimants to ensure those whose rights are most at risk are addressed. The rights to a determination would have to be enshrined in law and regulations and therefore the problem lies with the framing of the regulations as the transition is not properly addressed
• parents of disabled children find the transition process stressful because there is a level of uncertainty and disruption. There is a lot of information given when claiming Child Disability Living Allowance (DLA) which could be used in the transition process to alleviate some of that stress. Option 3 (applications for all) could be for the benefit of administrators and not the parents. If support can be provided for this option where everyone has to make a new claim then the group question why is the same support not available for seeking additional information. Some of the information will not be relevant as they are separate benefits but a lot of it will be useful for the new claim. The group felt it is important to improve the system for the people that use it rather than for the people who administer it and that the process should require as little effort from the client/families as possible, making use of existing information
• the group asked if they could have examples of people who were eligible for CDP and not for ADP to help them understand why. The paper mentioned that systems would need to be put in place depending which option officials go for, and wondered what the next steps would be and what the feasibility of it
• will it be clear at the start of the process whether claimants would need to fill in an application and what stage they may need to do that?
• the rights to a determination have to be enshrined in law and regulations. The balance between rights based and person centred approaches would need to be measured correctly. It was also stated that option 3 is the most rights based decision so it shouldn’t be discarded straight away
• if the policy intent is that someone will get CDP until the age of 19 unless they transfer to ADP or have a change of circumstance that means they are no longer entitled to CDP. The group felt it was positive to hear that claimants will continue to be paid CDP as long as they are entitled regardless of the outcome of the ADP claim
• is there a way for the Agency to be more proactive and let people who they know will need to provide further information what they will need to provide ahead of the person making the claim for ADP. This would make the process more user friendly rather than waiting until they have made the claim and suggested that the communication between claimants and the Agency should be tested as thoroughly as the policy design, as this will show whether claimants feel the process eases some anxiety and uncertainty than they have with the current system
• they highlighted that the act is where the determination without application provisions are set out and that nothing can be done without them in the regulations which is not in keeping with what the act intends. The group also noted that mixed methods research including qualitative and quantitative research is absolutely essential to monitor people's experiences and realisation of their rights

Officials thanked the group for their input and noted they would take on board the comments and questions raised.

Breakout groups: advice production

The group then broke into two smaller groups to discuss the following topics provided by officials:

Favourable options

The group noted that from the previous discussion it felt that the mixed approach was favourable as claimants don’t want to repeat information. They raised that while it does appear as the most desirable option there is the potential to confuse a person centred approach with rights based approach and agreed that although they are complimentary they are not the same thing. They raised concern of doing a disservice of the new system by laying language around person centred which can be misused.

They felt the process that takes different needs of claimants into account is the one they would like to see used and considered if an application could be used for everyone with the information already gathered included in it. Those in group A would get a practically completed application that just requires a signature and those in B and C will see what other information is required. It was considered that this would alleviate a lot of stress and uncertainty. They acknowledged that the regulations would need to be very clear on what the claimants were going to go through.

Significant risks of any of the approaches that have not been considered

The group felt there could be a difficulty with the claimant understanding the criteria for the new benefit without an application process. They noted that if the claimant doesn’t understand how they fit with the criteria they won’t know to seek a different rate in the future if they become entitled to it. There is a balance to be struck with the mixed approach as having everyone go through the same process is not equality as everyone has different needs. It is important that something is done about equality and intersectionality to ensure the groups who are most at risk of having their rights infringed are prominent.

Not all young people going through the transition period are having the same experience, whether it due to their protected characteristics or how they define their disability. The group felt that a significant risk for option 3 was that some of the people who get an application sent to them will not apply because they find it too difficult.

A lot of the young people who have been on Child DLA will have parents who don’t understand what they are being asked to provide which puts them at a greater risk on missing out on the benefit. The group raised a concern with the process of determination without further information which was that the claimants will have somebody safeguarding their money. If the claimant doesn’t have their rights flagged to them that they can be responsible for their own money this could cause issues further down the line for them. The group also noted a potential risk in the mixed approach with groups B and C and how they could potentially stop the process of the transition when it comes to the point they need to do an application form.

Alternative approaches not included in this paper

The group felt it would be good to have an additional information form with sections blanked out where the claimant does not need to provide anything else. This would help claimants understand what the criteria is and would be much easier for the claimant than filling out a completely blank form providing the same information they have done in the past

They also felt this would be reassuring to parents and the young person that the information they have already supplied has been taken into account. The group also felt there would be a benefit to make references to independent advice and independent advocacy to support claimants. They raised a point asking what happens before claimants ask to be transferred and how would they know to do that.

The group felt that work needs to be done with the claimant and their family ahead of the transition period to alleviate some of the anxiety associated with it. If the process was explained in detail to them, they would be less likely to leave applying until the last opportunity. It was acknowledged that there are a lot of changes in a young person’s life during the period they can apply for a transition but felt it would be important for them to be reminded that the transition can only go ahead while they are still eligible for CDP.

The group reflected on what has worked in the past with disabled people applying for self-directed support and noted that people need supports such as independent advice, peer support and advocacy to go through the process. The group noted that being fair to claimants isn’t about asking them all the same questions. Taking the principles from the act will give everyone the best chance of getting the correct rate and the process needs to be designed in a way to allow this.

The group restated understanding of the challenge of balancing rights, equality, value for money and appropriate use of resource. It was felt that whatever the process, people will be have entitlements and that finance and resources should not determine the process or the decision making: this should be human rights based.

It was agreed that Communications will be key to enabling people to navigate the process and that this will include accessible forms. There was also reflection that those with protected characteristics under the Equalities Act should be referenced as they are most at risk of not accessing rights.

Presentation: draft evaluation strategy for disability benefits

Jim welcomed officials who talked through a presentation on the Draft Evaluation Strategy for Disability Benefits. Officials noted that they would like the advice by the 31st May. They then asked the group for questions and comments noting that further comments could be raised via email after the meeting.

Action ten: Draft advice on the Draft Evaluation Strategy for Disability Benefits

Action for: Secretariat

Action by: 31st May 2021

The group asked officials what their comparators are or if they are doing a baseline as it is important for interpreting the significance of what comes out of the evaluation. They asked for clarity about intersectional impact e.g on people of colour, older people, LGBTQIA+ etc. They also noted the importance that the methods allow subgroup analysis to be undertaken as it is vital to understand the different experience of each subgroup. The group also felt it would be important to relate this to longer term outcomes. They also questioned how well officials have been able to pursue academic collaborations as it will be a set of issues there will be significant interest in.

They stated that there is nothing to measure take up and how effective the Scottish Government strategies are. This has consequences as one of the principles is that Social Security should contribute to a reduction of poverty in Scotland and unless there are benefit take up campaigns that will not happen. The group mentioned that disability benefits are a contribution to the reduction of poverty. It was mentioned that there has been no evidence of the Scottish Government seeking to encourage benefit take up as the Scottish Government have stated that there would be knock on effects on reserved benefits. The group mentioned that they don’t want disabled people to not receive their benefits because the Scottish Government doesn’t inform them of their entitlement.

The group were keen to hear thoughts on how supporting wellbeing and making contact as stress free as possible will be measured and how often it will be measured and commented that there is a benefit of taking a rights based approach to the evaluation as well as what will be monitored. This could be reference to specific rights of relevance or the rights based approach within the system following availability, accessibility, acceptability and quality and the panel principles. The Group noted that the UN has developed framework and there is guidance available on how to embed rights monitoring. This needs to be seen in any evaluation going ahead if Social Security is underpinned by human rights.

The group believed that decision making should be moved further up the priority list as decisions are already being made so the accuracy of decision making is important and highlighted that the key thing spoken about is the culture of the agency and they questioned how it can be evaluated that there is a better culture than with the DWP. The group also felt that a key evaluation should be around the stated purpose and intent of each benefit.

The group felt there should be space for personal testimony on how people feel about if the purpose is being met.

Jim thanked officials for their time and noted that the group have an opportunity to set out what they hope to see reflected in a mixed method approach to understanding experiences including how well Scottish disability payments are compensated in this advice to the Cabinet Secretary. He also stated that there is an opportunity in the longer term proactive advice to make a more detailed argument that could be tied to the minimum income guarantee.

Thanks and close

Action log:

• action one: knowledge building session for Motability to be arranged. Action for: Secretariat. Action by: 2021
• action two: draft advice on Pension Age Disability Payment. Action for: Secretariat. Action by: 2021
• action three: create a forward plan for the group. Action for: Secretariat. Action by: 2021
• action four: discuss Advocacy with SCoSS chair at upcoming meeting. Action for: Jim McCormick. Action by: 2021
• action five: knowledge building session with SSAFE (analysis and forecasting) to present expenditure forecasts to be arranged. Action for: Secretariat. Action by: 2021
• action six: conflicts of interest to be included as a standing agenda item going forward. Action for: Secretariat. Action by: 2021
• action seven: get advice on the best way to strike a balance with the minutes. Action for: Secretariat. Action by: 2021
• action eight: amendments to be made to February minutes. Action for: Secretariat. Action by: 2021
• action nine: draft advice on the transfer from CDP to ADP. Action for: Secretriat. Action by: 14 June 2021
• action ten: draft advice on Evaluation Strategy for Disability Benefits. Action for: Secretariat. Action by: 31 May 2021