Disability and Carer Benefits Expert Advisory Group minutes: September 2020

Minutes from the meeting of the Disabilities and Carers Benefits Expert Advisory Group on 29 September 2020.

Attendees and apologies


  • Tressa Burke (Deputy chair)
  • Fiona Collie
  • Frank Reilly
  • Ed Pybus
  • Jo McLaughlin
  • Lucy Mulvagh


  • Jim McCormick (Chair)
  • Lucinda Godfrey
  • Angela O'Hagan
  • Carolyn Lochhead
  • Bill Scott
  • Ewan MacDonald
  • Simon Hodge
  • Jatin Haria
  • Sarah Hammond
  • Shaben Begum
  • Etienne d'Aboville
  • Alan McDevitt
  • Carol Tannahill

In attendance

  • Ellen Searle (Scottish Government)
  • Stephen McCabe (Scottish Government)
  • Kath Smith (Scottish Government)
  • Jane Sterry (Scottish Government)


  • David Hilber
  • Kirsty Milligan

Items and actions

Tressa welcomed everyone to the meeting, especially Lucy who joined the meeting as a prospective new member of the Group.

Group business

David informed the group that the Independent Advocacy meeting minutes would be circulated by the end of this week and the first draft of the advice would be distributed by the beginning of the following week. He also informed the group that a meeting with the Equality and Human Rights unit had taken place and corresponding minutes would be sent out in the coming week.

Action one: Send minutes and first draft of advice from Independent Advocacy meeting out to the group

Action for: Secretariat

Action by: 9th October 2020

Action two: Send minutes from Equality and Human Rights meeting to the group

Action for: Secretariat

Action by: 9th October 2020

Tressa mentioned that the minutes from the two previous quarterly meetings had been sent prior to this meeting and asked the group to share any proposed amendments with the Secretariat.  

Action three: Review previous minutes and make any amendments

Action for: Group members

Action by: 9th October 2020

David ran through the actions from June quarterly meeting as follows: the meeting to develop advice on appointees had taken place in July; a meeting on equalities had taken place as mentioned previously; a new twitter handle had been created and David told the group to get in touch if they had anything they would like posted on there; a meeting on the legal framework on Case Transfer was held in June.

From the July quarterly meeting: there is advice and minutes currently going through the sign off process in the Scottish Government (SG) for approval before these are published on the DACBEAG website; David emailed the timeline for advice to the group; a Doodle poll will be sent out to DACBEAG members to confirm a date for the February meeting; members reached out to stakeholder groups for information to feed into the appointee’s advice; and lastly, meetings had been restructured so there was more time for advice production.  

Action four: Keep the website updated with advice and minutes

Action for: Secretariat

Action by: Ongoing.

Action five: Send out a doodle poll to confirm dates for the February meeting.

Action for: Secretariat

Action by: 2nd October 2020

David noted the group were waiting for responses on a few pieces of advice including the CACP response which was expected to be a holding response as a result of the ongoing re-planning and the Case Transfer response was expected to be with the group by the end of October. The advice on Appointees was received very quickly as it was tied to the Bill currently going through Parliament. Ed raised that he would like to discuss the response to one of the group’s recommendations around Corporate Appointees later in the meeting. David informed the group that the recommendation that the group should be extended is with the Cabinet Secretary with a response expected before the next quarterly meeting in November. He also noted that the Cabinet Secretary is attending the meeting in November for the first hour so David asked the group to provide suggestions for how they would like to spend that time.

Action six: Members to provide suggestions on what to discuss with the Cabinet Secretary

Action for: Group members

Action by: November 2020

David reminded the group of the new advice schedule which had previously been emailed. Carers Assistance was being discussed during this meeting as scheduled but Disability Assistance for Older People was moved to the November meeting agenda. In February the group will be meeting to discuss Industrial Injuries Disablement Benefit. He noted that the beyond a safe and secure transfer legacy note that was supposed to be worked on next quarter will instead be developed simultaneously with the advice requested by the Cabinet Secretary. Jim and Tressa were currently considering a discussion paper to be shared with the whole group to start conversations between members regarding this issue.

Discussion re: Carer’s Assistance advice request

Officials then gave a presentation on the paper that has been distributed to the group. This was about Carers Assistance (CAst). This noted points that would be useful for the group to discuss as well as questions proposed to help form the group’s advice.

Questions and comments from the group following the presentation included:

  • in regards to the question ‘are changes to Carer’s Allowance (CA) the best way to improve outcomes for unpaid carers?’ - you can never underestimate ways to put money in the pocket of people who are in poverty
  • there is a lot of qualitative information which National Carer Organisations could share
  • they have a lot of information that comes directly from carers on what their experiences are and what would make a difference
  • you need to look at the history of the benefit and how it was established
  • it was about putting money in women’s pockets who were having to give up employment to care for elderly parents
  • there have been changes over time but some of the issues with CA is from that premise. It can be seen as putting money in their pockets rather than it being seen as properly valuing caring and saying that it is an important part of life
  • we want to make sure that if someone takes on a caring role they have financial support alongside ensuring there is support for all aspects of caring including health and helping them back into work when their caring role ends as well as all others
  • what are the specific impacts of Covid going to be on unpaid carers?
  • what could be changed around CA to respond to that?
  • for example if we learn that more young carers are falling out of employment then we should find out why that is happening and what can be done to stop that continuing
  • are the rules on CA going to be a barrier to young people accessing education? Are they going to be a barrier to people trying to get back into employment?
  • what were the problems in the beginning and have they really been addressed?
  • covid exacerbated the inequalities that already existed. The collapse of the social care system in some local authorities has had massive implications for carers
  • it is in the interest of SG to get social care right as it can cost more in CA
  • there is an opportunity to sit CA more in the context of Human Rights. You can take a rights based approach to the design and delivery of the future benefit
  • this would make sure it was in line with other policy developments
  • it would be helpful to look at guidance the UN Special Rapporteur have said about the right to social security and what it would look like
  • think about other principles that might apply such as the 5-point PANEL principles
  • there has been a paper from the Scottish Campaign on Rights to Social Security about the future vision of disability assistance. There is content in that on some general principles and ideas which would be applicable to future CA
  • it is great to see it picked up that there are unacceptable data gaps in regards to particular protected characteristic groups. In terms of equality you need to focus on the intersections as this is where people are most marginalized and discriminated against
  • how far can social security go using treaties, conventions and Special Rapporteur when it is not incorporated in domestic law?
  • if the United Nations Convention for the Rights of a Persons with Disabilities isn’t in Scottish law then it cannot be held legally accountable
  • there needs to be a fundamental understanding of what CA is for
  • there are 50,000 people in Scotland who are caring for people more than 35 hours a week who aren’t getting CA. Are they not getting it because they are working too many hours or are students or have they not claimed? If they haven’t claimed then why not?
  • how do you ensure everyone is getting CA that is entitled to it when there is a pot of money that isn’t growing?
  • this is a conflict within all benefits but not being addressed anywhere. If there is a finite amount of money, there is a clear disincentive to getting everyone who is eligible to claim it
  • what is the level of uptake in people in poverty and what barriers are there for them claiming?
  • when Social Security Agency (Local Delivery) is going out into communities, where are they based? What are they doing?
  • we know the Department of Work and Pensions (DWP) is keen to ensure that conditionality is not devolved to SG but changes to CA that make more people entitled will have this effect as being a carer impacts conditionality
  • to many individuals conditionality is far more important than the extra money that comes from the carer premium/element
  • have you done analysis to work out the level of uptake on CA?
  • officials described in their presentation that the 65 and over age range is predominately where caring is occurring. That is also the group that is having the biggest impact from Covid symptoms and long term effects. This may lead to a shift towards younger people taking on that caring role
  • are you concerned about cross border rates in terms of access to benefits?
  • how do we make a difference to the quality of life for people?
  • poverty into retirement for long term carers has been built in to the system
  • how do we prevent that from happening? How does CA sit in with that?
  • for some people caring is a short part of life. For others it is something they do their whole life
  • how do we address these different types of caring?
  • for short term, how do we ensure they don’t fall out of employment or education?
  • for the ones that it is a lifelong commitment, how do we change the system so they are not in poverty at working age and into retirement?

Officials thanked the group for all of the questions and comments provided. They stated that the purpose for the meeting was to begin working out what the long term aim is and how to get there. They are not looking to make decisions that will affect things over the coming months.

Breakout groups: advice production

The group then formed two smaller subgroups to discuss the questions set out in the papers from officials.

Are changes to Carer’s Allowance the best way to improve outcomes for unpaid carers?

  • when considering how best to improve outcomes for carers, it is important to look at more than just CA and think about the other areas that impact carer’s lives
    • social care services are the most obvious example
      •  as things are now they do not start offering support until people are “on their knees”
  • preventative spend should be considered. If more resources are spent on improving employment and education outcomes for carers, how much will be gained in tax revenue?
  • are the Government engaged with social work and other parts of the caring system? How dynamic will the system be in relation to these other aspects?
  • it is essential that conversations happen with social care but also with other divisions
  • people who care are penalised systematically everywhere and have additional costs due to caring
  • it is important to take a human rights approach to how this is addressed as well as having a rights based system in the future
  • this is about progressive realisation, working towards something with continuous improvement
  • all people using the social security system want is transparency and to be actively involved in the conversation. They want honestly about what is possible and to be included in making decisions
  • there is a feeling that it is possible, but SG look at it from the financial side
  • we should be working towards a system in social care that takes a much more rights based approach
  • starting by looking at what people’s rights are and what their needs are and then Figuring out how to create a system that helps deliver these in addition to looking at what it will take to resource it
  • ways to raise that available resource could be income generation either through SG or other means
  • changes that could happen in the present regarding social security will play a big part in helping to lay the groundwork for the next steps
  • certain local authorities, because they don’t have the money, will being to say that certain things are no longer needs. It is a concern that this could happen in social security at some point unless the underlying issue of funding is addressed
  • in a system like social security in which legislation is rights based, getting more things into regulations that are based on international human rights law will get more things right from the get go
  • when it then goes to local authorities or whoever is in charge of interpreting this, they cannot decouple rights and needs

What outcomes should be our focus and why?

  • increasing incomes is key
    • CA is often the only individual independent income that carers have, i.e. the only income that is purely theirs  
      • it gives people a choice in how they spend that money, which is critical
    • addressing poverty is where social security is best placed to make an impact
      • right now CA is taken off of means tested benefits £ for £, which doesn’t help those in poverty
      • while CA may not be the best way to address poverty generally given the limited group of people entitled to it, it definitely plays a role in the lives of the people who receive it
    • iniversal entitlement would make a big impact in terms of uptake
      • it is also important in terms of taking a rights-based approach
  • the earnings threshold is problematic and can cause issues for those who want to work alongside caring
    • for example wage changes need to be continuously reported
  • all caring is not equal
    • someone caring 35 and someone caring 70 hours per week are both given the same amount
    • recognising the importance of caring is an important part of CA
      • many people are frustrated when they reach state pension age and no longer receive CA due to the overlapping benefit rules
      • this suggests a universal, non-means tested benefit may be superior
  • right now CA is treated as an “income replacement” benefit which is questionable
    • its value is lower than ESA/JSA/UC so it is not really meant to give someone enough to live on. Moreover these benefits are not meant to be claimed long term anyway to encourage people to get back into work
  • how CA interacts with reserved benefits will be a huge issue that needs addressed
  • it is not just about physical health and wellbeing. It is about employment and participation and other things in that area
  • the first thing is that it is about money but also what the purpose of the benefit is
  • there needs to be something that is personalised to meet individual needs
  • health, social care and welfare are all directly related. If you amend one, you will affect the others
  • there are measures that the National Carers Associations have proposed in regards to the period during which people can continue to be paid once caring responsibilities come to an end. SG could think about extending that and the eligibility for it
  • it seems like there is a lot of outcomes being proposed but there is a lack of reference to human rights
  • if it’s not embedded in the language of the policy papers, it will never be put into practice
  • if there is the principles from the Social Security (Scotland) Act 2018 then use them. Principles are to be turned into outcomes
  • speak to colleagues that are working in social care, looking at the reform of the adult social care agenda and the independent review of adult social care
  • there are big changes being proposed in social care. If they can happen in communication with the changes in social security, that would be great
  • there needs to be an outcome about relationships
  • this is fundamental to mental health and wellbeing
  • huge numbers of families break up when there is a disabled child which causes a parent to have to give up work

Which elements of the unpaid carer experience of social security, particularly in respect of Carer’s Allowance, currently work best and deliver the greatest benefit?

  • the claim process is simple and fast to pay
    • Northern Ireland has a good online claims process that could be emulated
    • the claim doesn’t require a lot of intrusive questions – e.g.not asking a claimant to prove their caring responsibilities
      • this is taken on trust, as all social security should be
  • it passports to no conditionality for means-tested benefits

What elements of the unpaid carer experience of social security, particularly in respect of Carer’s Allowance, are in most need of change, and why?

  • the complexity of the earnings threshold and “full time” education conditions means carers have to make big life decisions
    • it is also easy to make mistakes which can cause large overpayments
    • fluctuating incomes are problematic. £1 over the limit can end a claim
      • it is unclear what this is achieving
  • uptake is a big issue
    • it is inherently difficult to project and identify who is eligible to apply but has not applied
      • universality would address this
    • there is a fear to applying because people have heard it can be used against them in a disability benefit assessment
    • people don’t understand that carer premiums/element make them better off. They hear it comes off £ for £ and don’t bother claiming
    • difficult to know if individuals know it as an easy straightforward claim as many other benefits are far from easy to claim
    • disabled people may lose severe disability premium so people are reluctant to claim
    • for UC there is no need to claim CA, is the intention to abolish it?
    • the law says all overpayments are recoverable so people are reluctant to claim for fear of making mistakes and having to pay it back
  • people are turning 16 who have been caring before and are only now just eligible. It is not a seamless transition at that point and some are falling through the cracks
  • if we lose sight of that we lose the ability to make the Scottish system a better system
  • it doesn’t work when there is discrimination and prejudice. People feel there is a monolithic bureaucracy that seems designed to try and trick them and designed to deprive them of their rights rather than supporting them
  • most people find it bizarre that you can’t be considered a full time carer if you are studying full time
  • the rules are archaic around this
  • it speaks to a system that doesn’t understand what unpaid care is
  • people value being treated with respect and dignity
  • is there a possibility we can change the rules around this?

What opportunities are there to better integrate CAst with the wider carer landscape, across Scottish Government policy, local government and the third and private sectors?

  • if CA is a barrier to education and employment, this needs to be analysed and addressed
  • there is a lack of support when caring ends. There is a 8 week run on period if the cared for person dies, but there is no linking up with other services to support people through the transition.
    • is 8 weeks the right amount of time?
    • if care stops for a reason other than death, there is not a run on
    • especially for people who provided care for a long period of time, support with transition to employment, education, etc. is key
  • we should be cautious of the move to digital
  • the pandemic moved people into going digital much quicker
  • carers want a range of options for engagement. They would like to be able to change which method they use and not be tied into whichever they choose at the start
  • Independent Advocacy is crucial but is massively under resourced and underfunded
  • unpaid carers have difficulty accessing that supportr

What are the key points to consider now in ensuring equalities and diversity sit at the heart of policy development for CAst?

  • getting good data is paramount
    • if we are unable to identify gaps, we need to figure out how to address this
    • work with organisations who work with seldom heard groups
    • there is a big issue with disabled people losing their benefits because they are carers
      • they are told they can’t be disabled and care which is clearly wrong
      • there must be clear guidance saying caring responsibilities should not be taken into account for purposes of disability benefit assessments
      • anecdotally we’ve heard of social workers telling people they will need to end their CA claim if they want to claim disability benefits
  • now is the time to be thinking about creating thorough and robust Equalities Impact Assessment (EQIA) and Human Rights Impact Assessments before further policy development takes place.
  • EQIAs should not to be done after the fact
  • the best way to do them is in partnership with organisations like Glasgow Disability Alliance and Inclusion Scotland who are very skilled and experienced
  • they are under resourced and underfunded so the more notice that can be given the better
  • EQIAs are often done and then never looked at again. It is as important to be monitoring the impact as it is to consider potential impact
  • if it can’t be done at the outset, bring people in as the process evolves
  • sometimes they are done right at the start and then never checked for how it did impact people

Group discussion

The group then met in private to reflect on the discussion.

  • carer Centres were mentioned in the paper but the Group had not discussed it with the officials
  • if they were going to link a lot of things into Carer Centres then funding would need to be adequate and long term for them to perform a fundamental role in bringing services and advice together for carers
  • carer Centres aren’t universal and provision isn’t universal so there is a question on how it would work. It would need to be built into the system
  • there is probably one in every local authority now which could be a reflection on the fact that a lot of them have been commissioned to provide information and advice under the Carers (Scotland) Act 2016
  • even with that most Carers Centres have had standstill funding for a long time. To ask for additional activities from Carers Centres then there needs to be more resourcing of them

The group raised concerns that the breakout groups were uneven in skill set and therefore made it difficult to answer the questions set out by officials. As it was a smaller group of members felt that staying one group rather than splitting off might have been better although the officials did need to hear from both a technical and a human rights viewpoint.

  • the group noted that the paper did not mention human rights and Social Security officials were usually consistent with their references to rights. A rights based approach was deemed crucial by the group
  • it was noted that the group still had some questions and views around changes that could be made to CA that would make a real difference to carers rather than around how CA would fit in with other policy
  • there might not be much change to CA because of the interactions with other benefits and the budget
  • there are smaller changes that could be made to improve this
  • making the system better won’t necessarily change much for carers
  • there are so many complications with CA
  • how do you make changes that will make a difference for some carers?
  • the group noted that officials had come to them early in the policy process and hoped that their bigger ideas would be considered even if costly
  • the group felt that a focus on forensic detail work would also be beneficial down the line

David informed the group that officials were at the early stages of developing CA and would come back to the group at a later date but for now it was the wider issues they thought the group could advise best on.

The group noted further questions it would be helpful to be updated on in the future:

  • how are the policies already in place such as Young Carer Grant and Carer’s Allowance Supplement going to integrate with CA?
  • is the Carer’s Allowance Supplement always going to be a part of CA?
  • what is the cost of that compared to the cost of allowing students to claim CA?

As mentioned at the start of the meeting Ed wanted to discuss Corporate Appointees. He noted that in a previous advice note it was detailed that Corporate Appointees should have specific obligations. There are many cases where corporate appointeeships don’t work. He mentioned a case study where the Corporate Appointee failed to return PIP 2 which caused a huge financial loss. Ed feels like there was a gap around Corporate Appointees and an opportunity to create clear guidance around it. Officials don’t seem to be aware of the issue and the group have an opportunity to make a difference to the group of people affected. There is power of attorney but they won’t have an insight into social security. There could be a case for Corporate Appointee guidance because a regular Appointee will get welfare rights advice if they feel they need it but a Corporate Appointee isn’t going to do that.

The group is well within its rights to write again about the issue and will start with speaking to officials, then if it is required a letter can be written to the Cabinet Secretary.

Action seven: Set up meeting with Appointees officials

Action for: Secretariat

Action by: October 2020

Thanks and close

Action log

  • action one: Send minutes and first draft of advice from Independent Advocacy meeting out to the group. Action for: Secretariat. Action by: 9th October 2020
  • action two: Send minutes from Equality and Human Rights meeting to the group. Action for: Secretariat. Action by: 9th October 2020
  • action three: Review pevious minutes and make any ammendments. Action for: Group members. Action by: 9th October 2020
  • action four: Keep the website updsted with advice and minutes. Action for: Secretariat. Action by: ongoing
  • action five: Send out a doodle poll to confirm dates for the December meeting. Action for Secretariat. Action by: 2nd October 2020
  • action six: Members to provide suggestions on what to discuss with the Cabinet Secretary. Action for group members. Action by: November 2020
  • action seven: set up meeting with Appointees officials. Action for: Secretariat. Action by: October 2020
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