Disability and Carer Benefits Expert Advisory Group minutes: February 2021

Attendees and apologies

Present

• Jim McCormick (Chair)
• Tressa Burke (Deputy Chair)
• Fiona Collie
• Frank Reilly
• Ed Pybus
• Jo McLaughlin
• Lucy Mulvagh
• Lucinda Godfrey
• Carolyn Lochhead
• Bill Scott
• Etienne d'Aboville
• Ewan MacDonald
• Simon Hodge

Apologies

• Angela O'Hagan
• Jatin Haria
• Sarah Hammond
• Shaben Begum
• Alan McDevitt
• Carol Tannahill

In attendance

• Jana Eyssel (Scottish Government)
• Kellie Dingwall (Scottish Government)
• Maria MacLennon (Scottish Government)
• Martin Moodie (Scottish Government)

Secretariat

• David Hilber
• Kirsty Milligan
• Shona Forrester

Items and actions

Welcome and previous action points

Jim explained that the group had been extended for at least a further year. He noted that this will give the group time to review how effective delivery of the benefits that have launched has been.

He thanked David for the work he has done for the group as secretary and welcomed Shona. Jim informed the group that Shona will be coming on as the new secretary. He noted Shona’s experience in previous roles will be an asset to her role in the group.

Jim then talked through action points from the previous meeting. He mentioned the group wanted to learn more about the Motability scheme and how it would interact with the Scottish benefits. He noted that the Social Security Advisory Committee (SSAC) to the Department for Work and Pensions (DWP) have done work looking at the pros and cons on how Motability has been delivered and that the group could merit from looking at that work.

Action one: set up a follow up meeting to discuss Motability

Action for: Secretariat

Action by: March 2021

Action two: Write Pension Age Disability Payment advice and distribute for comments

Action for: Secretariat

Action by: 2021

Jim informed the group that the reply for the advice on Independent Advocacy was received on the 9th February. He noted that it was a constructive response that faced up to concerns that the group expressed. Jim asked the group for any thoughts on the paper after the meeting.

Action three: group members to send any thoughts on the Independent Advocacy response

Action for: Group members

Action by: End of February 2021

Action four: confirm with officials if the paper can be shared formally with SIAA, The Alliance and SCoSS

Action for: Secretariat

Action by: End of February 2021

Discussion re: award duration/indefinite awards

Scottish Government (SG) officials began by giving a presentation on Award Reviews and talked through the main points including a question they want the group to discuss.

The group asked the following questions:

• if you send different forms to different people depending on whether their condition is expected to change, who within Social Security Scotland (The Agency) decides whether a person’s condition is expected to change and which form to send to the client?
• you’ve said there will be a longer form sent to those whose condition is expected to change. When The Agency starts to run out of money, this form may be sent out even when it’s not needed depending on who is making the decision

• how are the SG progressing skills around how to qualitatively assess client’s answers on the form?
• when a client believes they have a had a change in circumstance, is it a single form they receive with easy to answer boxes?

• you noted the possibility of clients receiving the full form and being asked to only fill in the parts that were relevant to them. This might cause confusion as people may feel like they need to fill in every box

• if the client’s change of circumstance is only in reference to a change in their condition, the process becomes medical. Are the SG looking to ensure there is an inclusive social and human rights model of disability which takes circumstances as well as conditions into account?

• there could be changes to equipment the client uses to assist them doing tasks as well as changes to transport which could impair them. It is important to look at all circumstantial changes

• at what point is it established if somebody requires independent advocacy?

• how does a client access it?
• how is it ensured that there is enough time to arrange it?
• they may need it to effectively fill in the forms

• officials mentioned that the client could be sent information about their previous award. Will that be the award determination made by case managers or will it be the information the client provided in their application?
  • this is a good idea because clients can sometimes get confused about whether they are being asked to report a change related to their capability to work (i.e. for UC/ESA) or how their condition affects their functional abilities
• the primary condition that a client applies for might not be the only condition they have or new conditions could arise. Will that be asked about in the form?
  • if a client is only asked if there is a change in their condition they may say no without giving information about new conditions
  • similarly they might not report changes in other conditions that they do not consider to be their “main” condition
  • questions should therefore focus on changes to abilities and care needs rather than their condition
  • it’s important to remember there can be shortfalls to asking people to describe thing in their own words
    • disabled people often underplay the seriousness of their condition or the impacts it has on their abilities
• it’s important that the term “fluctuating conditions” is used correctly. It means that someone has a condition like fibromyalgia or bipolar disorder that can change rapidly. It does not mean a condition that gets progressively better or worse

Officials then discussed the policy paper on Indefinite Awards that had been distributed to the group. This included questions that would be useful for the group to discuss and help form their advice.

The group then asked officials the following:

• for clients who receive indefinite awards, i.e. their award will not be reviewed by the Agency, could there be additional points of contact for those who need it?

• reviews should be about supporting clients and not just about entitlement to money
• a lot of people on long term awards don’t have any other interaction with services. Award reviews can serve as a way to connect people to other useful services
• the tenor of reviews should be “how are you getting on?”

• there are conditions that will never change so why can’t the SG give automatic entitlement of an indefinite award to clients with those conditions?
  • e.g. people with paraplegia, quadriplegia, etc
  • there is definitely a role for condition based automatic entitlement
• while it is good to take a person centered approach, indefinite awards will necessarily be based on conditions in some way
  • we shouldn’t throw out the idea of automatic entitlement on principle alone
• under DLA there were awards that got automatic entitlement and indefinite awards. Why isn’t that being adopted?

• if there are breakthroughs in medicine, they could be subject to review but until that point they should have automatic entitlement

• the financial risk of giving indefinite awards has been highlighted, but it is unclear exactly what this risk is.
  • what are the dangers of overpayments? Has there been analysis of what these might be?
• If the DWP wouldn’t give someone an indefinite award but the Agency would, how is it a risk if the award would continue on the review date?

• the danger of overpaying lies with incorrect awards, not with indefinite awards

• what is the cost of the status quo? This needs to be compared with the risks of overpayment that have been highlighted

• reviews cost money and appeals have a substantial cost
• the human cost of that system needs to be looked at also
• the decisions that underpin these needs to be questioned

• who makes the decisions? There needs to be constant reviews of the process
• how will you communicate to clients what the consequences of notifying a change of circumstance might be?

• how are people invited to provide that information?

• the architect of the social model never had an issue with using a medical model criteria to entitle clients to indefinite awards. How can these work together?

Breakout groups: advice production

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

• in tailoring our approach to the Client’s need and circumstances, do DACBEAG think it’s appropriate that Clients receive slightly different forms based on their anticipated likelihood of change?
• would you agree that our high-level approach to making indefinite awards is appropriate or do you foresee any issues?
• are all of the proposed approaches necessary or only some? If not all, which would the group recommend implementing?
• are there any other options which the group would recommend implementing in relation to indefinite awards?
•  do you foresee any issues for particular scenarios, such as clients with fluctuating conditions or new treatment becoming available for a condition that previously meant that a client’s needs would not change?

The first question was in relation to Award Reviews. The group raised the following points:

Group one

• if the SG can make a reasonable assumption on whether the client has experienced change, then it seems reasonable that clients could receive a different form as long as there is an option for them to input anything unexpected
• what a client wants is an easy form to complete

• the reason current forms aren’t easy to complete is because they have to collect vast amounts of information

• having a short form risks not collecting information that could be helpful at redetermination
• if a client indicates that there is no change, do they just continue with the same award?

• although that would be great, it risks the client then having the wrong award
• it is possible the Agency will still have to get more information which then defeats the purpose of the two forms

• there is a balance between not having a barrier for clients and ensuring the correct information is collected
• there will be awards where the Agency will be able to identify that the client will have no change. These are the ones who are awarded the top rates already

• there are conditions that are known to only get worse or are permanent. You can send a short form to these clients as they will only get worse. Therefore their award won’t be changed
• other clients need to be sent a longer form

• the SG need to be wary of only asking about primary conditions as new conditions can emerge or conditions can get worse and the client may need more support than they did for the primary condition
• the group of people whose condition is not expected to change would be those receiving indefinite awards so the short form might not be needed at all
• it is vitally important for the Agency to be instrumental in the change of attitude towards those who receive disability benefits

• this will mean when clients receive correspondence from the Agency, they know it will be someone supportive at the end of the line

• one option could be to send a pre-populated form with the information provided at the last review point and ask the client if that information is still correct

• the danger would be if the client just indicated no change for everything and no further information is collected

• clients will likely get in touch with the Agency themselves when they feel they are entitled to a higher award. However, their idea of what is a relevant change is often different to what is relevant in terms of a change in award
• it is important to know who will be making the decisions on the awards

• when you default to assume that people will make good decisions, you are defaulting to prejudice, stereotypes and culture of an agency
• the culture will be driven by the financial constraints

• future proofing is something the SG needs to be aware of, there may not always be the same values
• the Agency need to be aware of the culture and avoid repeating mistakes that have been made in the past

Group two

• there’s an assumption being made that old evidence is still relevant. Is this assumption accurate? This could be tested
• it could be confusing if everyone is sent a full form and asked to comment on sections that are relevant
  • clients may feel pressured to fill in all sections for fear of missing out
• how clear will the communications be regarding how much needs to be filled in? Depending on how clear it is, there may not be a need for separate forms
• it is positive to include past info
• it is difficult to comment on the forms without having seen them, can these be provided?
• questionnaires can be unintentionally discriminatory in how they ask questions
• unconscious bias can be possible in decision making depending on how individuals answer the questions in the forms
• “have your circumstances changed” is a big question!
• people need to understand why they are getting one form or the other
• equality and human rights impact assessment should be used to inform this decision
• all forms should signpost to independent support for help to fill them in

The remaining questions were on the topic of Indefinite Awards. The group discussed the following:

Group one

• the proposal to minimize financial risk by making sure indefinite awards are made only after several reviews seems to be striking the balance in the wrong way

• this doesn’t take into account the benefit of indefinite awards to the client

• dignity and respect need to be checked as thoroughly as the financial risks
• previously the group had advised that people with lived experience of disability would provide training to the Agency and that appears to have dropped off

• case managers should regularly be getting input from people with lived experience of the system. This would help reduce prejudice

• the group think the experience panels are fantastic but they are too big to do meaningful capacity building peer support
• if the high level approach is appropriate then it needs to build in the wider picture which cannot exclude people with lived experience as part of that discussion
• SG needs to ensure the decisions are culturally informed by the experiences of people who are not directly involved in that decision

• when the client’s circumstances are clear, there is a better chance of making the right decision for the client

• although the group understand the decision around not offering indefinite awards to clients on lower level awards so they don’t get stuck, there are some that will never change from that award. Is it reasonable to not offer them indefinite award?

• could a client get indefinite award if they are on the highest level of daily living but lower on mobility?

• if reviews were only to see if the award could be increased, that would remove a lot of anxiety
• there are conditions that are never going to change. What is the point in reviewing them twice before they are put on indefinite award?
• if someone has claimed and were refused, would the Agency contact them in five years’ time to see if their condition has changed?
• a client could receive the highest rate of the care component because of their condition but are not affected by mobility at all. They could then suffer with mobility issues as they get older. They should be picked up in the same way as someone who isn’t already in receipt of a disability benefit
• there is a real lack of trust from disabled people when it comes to reviews

• the group expressed they are hopeful that the relationships can change and improve

• there needs to be a distinction between genuinely fluctuating conditions and those that fluctuate on a day to day basis
• there is a lack of understanding of these conditions within the SG as well as with the medical professionals that have been brought in
• a real person centered approach would take into account if a condition is permanent. Why are these clients not offered indefinite awards?

• there are a small number of conditions that can be identified where making an indefinite award is the correct thing to do

• it’s not clear what the basis of awarding indefinite awards is
• two case managers could look at the same case and come to different conclusions and they would both be right in law

• at a review a different case manager could look at your award and remove it. This doesn’t mean the first award wasn’t correct
• this is always going to be a danger with reviews and part of the client’s anxiety around them

• the current system is designed to discourage people from claiming which means there is a big job for the SG to work on the distrust of clients
• it is important that the client always has the right to ask for a review
• having to have a set number of reviews before indefinite awards are awarded is not something the Group supports

Group two

• is the decision of indefinite award communicated? Is it challengeable?
• none of the proposed approaches to deciding indefinite awards seem particularly unreasonable, are there trade-offs between them?
• different approaches may be necessary for ADP vs PADP
• the overall policy intent seems to be about maximizing incomes, is there any chance it can be changed to limiting spend?
• Social Security is fundamentally about allowing individuals to fully exercise their rights
• it may be more appropriate to give indefinite awards to people on the highest rates
• if more information is needed to determine if someone is eligible for an indefinite award, people should have autonomy to choose what information is used. It is clear this is how it works at the point of application, is it the same when determining indefinite awards?
• I still don’t understand how I would get an indefinite award, the complexity of the decision making makes it difficult and it will be difficult for clients
• more work needs to be done to understand how this experience will feel to clients
• do people have a choice not to have an indefinite award if they don’t want one?
• without more details it’s difficult to agree to principles
• we need to be clear about why people want indefinite awards and ensure that is used in determining the principles
• reviews should be more like a check of support needs, it should be separated from the benefit issue
• until people experience the new system it will still feel like DWP
• what are the costs of not including indefinite awards?
  • need to look outwith social security to really determine this
• Indefinite Awards can be really important for purposes of passporting other entitlements (e.g. motability). It gives certainty to clients

Group discussion

The group then met in private to reflect on the meeting and discuss group matters.

Jim asked the Group for reflections on the meeting. The group raised the following points:

• lived experience is important in these processes. Has the opportunity to include people with lived experience in training staff has passed the Agency by?

• there is a cultural shift away from DWPs approach the Agency are hoping to enable
• it is difficult to look these things without looking through the lens of where we have been rather than where we want to get to. When lived experience is utilized, that changes dramatically

• what is striking is the way the SG frames their policies as wanting to do it better than DWP. This is great to eliminate the bad practices but it is also limiting

• it would be better to look at how things could be using creative thinking and ambition

• where are the Equality and Human Rights Impact Assessments on the paper the Group received?

• has it been done and if not can it be done soon?
• can people with lived experience be meaningfully and actively engaged in that process?
• there is a clear absence of equalities considerations

• experience panels are a huge step forward in terms of involving disabled people in the design and policy making. Capacity building is missing from that process

• some of the engagement hasn’t been as meaningful as it should have been because people can only make choices when they have been given the information

• it would be good to hear from experience panels officials because when there is time to get into some depth, there is usually better quality thinking and decision making
• Is it fair that a client has to be on a high rate on both components of the award?
• there needs to be a distinction when referring to fluctuating conditions between a condition that fluctuates where you won’t have it at all and a condition that will always be there.

• the latter can fluctuate throughout the day or day to day

• it is important that a client always has the right to challenge their award even if they are on an indefinite award
• don’t agree that clients need to have a number of reviews before they receive indefinite award

• clients have no trust in a system that claims to only review awards in case anything was missed. Reviews under DWP have been brutal and lead to benefits being cut. The Agency will need to overcome DWPs legacy and change people’s perception

• we need to try and design a system that won’t change regardless of the fiscal settlement
  • finances will undoubtedly change, so we need to be realistic
• we should be asking if the Agency have received training with experience panels
• should there be a differentiation between adult and pension age clients?
• there is a strong correlation between aging and disability. Some conditions deteriorate with aging also

Jim noted that what is helpful about the groups conversations is the way the group take the questions set to them and connect them to bigger questions. He said that what isn’t wanted in Scotland is a perfectly formed silo that may do a good job but is poorly connected to the likes of social care.

David ran through the next steps. He confirmed that the advice will be going to the Cabinet Secretary about 6 weeks after this meeting and there will be time for the group to make comments in the drafting process. He noted that officials were aware that this process could take longer due to the handover between secretaries.

Jim then brought the group to the final agenda item which was to discuss the paper David had drafted. This paper to fulfil a previous commitment of the group which was offering the Cabinet Secretary something that goes beyond the parameters of what is currently being done. Jim noted that this hasn’t been requested but the group are offering it to the Government.

David explained that the paper is currently a rough draft to get the conversation started. He informed the group that originally the paper was going to be issued when the group disbanded but as there has been an extension, there is more time to work on this. David asked the group to consider if they would like the paper to go to the Cabinet Secretary by the end of March, or if they would like to do a more detailed piece of work. They should also consider how much work they can take on.

The group made the following points:

• they could aim to have a fuller version of what is already provided, which puts down markers that any administration would face

• aim to have this done in the next 6 weeks
• this could feed into a deeper process that can be done post-election

• the Scottish Campaign on Rights to Social Security (SCoRSS) recently had a meeting with the Cabinet Secretary to discuss their Beyond Safe and Secure Transition paper

• the Cabinet Secretary seemed open to having conversations about what the future system could look like
• there would be merit in taking a phased approach and producing something high level before recess. This could say that the Group want to go into more detail in the future
• the paper may need renamed as it currently has the same name as SCoRSS

• it would make sense if something can be put together before the election. It could say that there is an updated version coming after the election
• it would be worthwhile to make a start but it would be better to go to the incoming Cabinet Secretary with a fully developed paper

• if it is a new Cabinet Secretary, that would be the time they will be setting their agenda
• if it is sent before then it could end up in the purdah period and there is a danger of it being politicized by other parties

Jim concluded the discussion by acknowledging that the group is in agreement to start the paper. He noted that the group could send a letter to the current Cabinet Secretary as a legacy note which would let her know of the work the group is undertaking. He noted that it would be good to have volunteers before the next quarterly meeting. Jim explained that the group can ask analysts questions that arise and Shona can write drafts based on group discussions.

Action five: Begin discussions with volunteers on the paper

Action for: Secretariat

Action by: March 2021

Thanks and close

Action log

• Action one: Set up a follow up meeting to discuss Motability. Action for: Secretariat. Action by: March 2021
• Action two: Write Pension Age Disability Payment advice and distribute for comments. Action for: Secretariat. Action by: 2021
• Action three: Send over thoughts on Independent Advocacy response. Action for: Group members. Action by: End of February 2021
• Action four: Confirm with officials if the paper can be shared with SIAA, The Alliance and SCoSS. Action for: Secretatiat. Action by: End of February 2021
• Action five: Begin discussions with volunteers on the paper. Action for: Secretariat. Action by: March 2021