Disability and Carers Benefits Expert Advisory Group: indefinite awards advice

To: Shona Robison – Cabinet Secretary for Social Justice, Housing and Local Government

Ben Macpherson – Minister for Social Security and Local Government

By e-mail

02 July 2021

Dear Ms Robison and Mr Macpherson,

Indefinite Awards

Thank you for your request to provide advice on indefinite awards for Scottish disability assistance. We are pleased to offer our advice on this matter below.

We welcome the commitment by the Scottish Government to ensure safe and secure delivery of the newly devolved benefits, and to improve the application process for all clients. We understand that our advice may incur risks, implications and challenges for the Scottish Government. These will be made explicit in this advice note and we aim, where possible, to signpost a proposed solution.

We have worked with officials to ensure that our advice is informed by information available at this time and relevant to the current policy landscape. We met with officials on 10 February 2021 to discuss this issue. We would like to especially thank the officials who worked with us on this policy area. Their input was clear, concise, and greatly aided us in focusing this advice.

Clearly, information and the current policy landscape may change in ways that cannot be foreseen at this time, so the advice we give now is with the caveat that this too may change in light of developments.

We set out below some issues arising from our discussions which we wish to draw to your attention. Our recommendations are summarised at the end of this letter.

Background

In December 2018, we provided advice on award duration for disability assistance. In this advice we agreed with the recommendation of the Ill Health and Disability Benefit Stakeholder Reference Group that “in cases where there is no likelihood of improvement, there should be at least five years between light touch reviews”. We also agreed with the suggestion made at that time that a maximum review period of 10 years was reasonable. We further acknowledged that there are some cases involving long term impairments or conditions which would not benefit from a review in the current system e.g. individuals with Downs Syndrome or those with severe impairments that are never going to improve and who are already receiving the maximum award. We also noted that more than 50% of Experience Panel participants expressed a preference for an indefinite award for unchanging conditions/disabilities. We, therefore, caveated our support of the recommendation with the expectation that reviews in the new system would be light-touch, supportive, person-centred, and minimise stress and anxiety.

Since this advice was provided, and in light of the subsequent Consultation on Disability Benefit in 2019, we understand that there is now a preference to consider how indefinite awards could sit within the devolved social security system. We welcomed clarification from Scottish Government officials that indefinite (also known as lifetime) awards, means awards of disability assistance which would not be reviewed unless a client notifies Social Security Scotland that there has been a change in circumstances. Officials also clarified that the intention of indefinite awards is to ensure that clients whose needs are unlikely to change over time are not subject to needless reviews.

We have been asked for our views on developing a consistent framework for making indefinite awards for clients entitled to Adult Disability Payment or Pension Age Disability Payment. In briefing provided to us by officials it was set out that the intention is for the framework:

• to be a transparent process which clients are able to engage with easily

• not to be automatic or based solely on a client having a particular condition but based on a more holistic overview of the client’s needs

• to ensure the right balance between taking a trust-based approach that helps avoid unnecessary reviews for clients and providing case managers with enough information and assurance to allow them to minimise the financial risk associated with error and overpayments

Our discussions have highlighted a number of areas for further consideration that we hope will help officials to develop the framework.

An holistic overview of clients’ needs

The paper provided by officials outlined various potential eligibility criteria which could be taken into consideration when determining whether a client is eligible for an indefinite award of disability assistance. This included:

• clients must be on the highest level disability assistance to be eligible for an indefinite award

• clients are required to have their award reviewed a set number of times before they are eligible for an indefinite award

• case managers can only award an indefinite award after carrying out a review of a client’s existing award

Consideration of a client’s impairment or condition

The paper from officials noted that it is vital that an indefinite award is not automatic or based solely on a client having a particular condition but on a more holistic overview of the client’s needs “as failure to do so could lead to looking at client’s cases through a medical model of disability and awarding indefinite awards based on conditions rather than the needs of clients. This goes against the social model of disability and our goal of creating a person-centred approach to decision making that is built on dignity, fairness and respect”.

Notwithstanding the above, we would suggest that there are occasions when it would be appropriate to use an impairment or condition as a reliable proxy indicator for a likely level and pattern of disability and therefore potential suitability for an indefinite award. We do not consider that, applied correctly, such an approach would be ignoring the social model or not be ‘person-centred’. The social model helps us appreciate that disability (i.e. disadvantage) is created by the barriers that someone with an impairment encounters in the world around them rather than simply being a function of the impairment itself. However, to recognise that someone with a long-term impairment is highly likely to encounter substantial, enduring barriers is entirely consistent with a social model approach. It is the likely persistent nature of the barriers that enables us to do this. We are not saying that the cause of disability is impairment as an individual or medical model might imply. We are suggesting that for some people with certain impairments or conditions, there will be a predictable level or pattern of relevant barriers they will inevitably encounter.

Recommendation 1: Officials may wish to look again at including consideration of certain impairments or conditions as a proxy indicator for a likely level and pattern of disadvantage and therefore suitability for an indefinite award.

Using highest award levels as a criterion.

Although the Group acknowledged that it may be more appropriate to give indefinite awards to people on the highest rates, and understand the rationale behind the suggestion not to offer indefinite awards to clients on lower level awards, there are some clients on lower rates that will remain permanently on that award level. There may be some cases, for example, where it would be appropriate for a client on the highest level of daily living but lower mobility to receive an indefinite award.

Recommendation 2: consideration of when a set review period may be inappropriate, and that an indefinite award should be made, should not be limited to clients on the highest award levels.

A set number of reviews.

It is not clear what the advantages would be of requiring a client to have undergone a set number of reviews before they are eligible for an indefinite award, or that a case manager could only make an indefinite award after carrying out a specific review for that purpose. If there is sufficient information from the client’s initial application, or most recent review to suggest an indefinite award would be appropriate then insisting on a further review or waiting for an arbitrary number of reviews would not seem to be in a client’s best interests, nor an effective use of case managers’ time.

Recommendation 3: case managers should be able to consider whether a fixed term review period is inappropriate, and therefore an indefinite award may be appropriate, at application stage as well as when reviewing a client’s case.

Guideline, rather than strict, criteria.

Ultimately the test for case managers should be that an indefinite award is made where a fixed review period would be inappropriate. Rather than a rigid set of eligibility criteria, we would suggest a set of guideline criteria for case managers to consider when it is inappropriate to set a fixed review period and therefore appropriate to make an indefinite award. For example there could be an assumption that it would be inappropriate to set a fixed review period for a client with certain impairments or conditions, or that it may be most appropriate for clients on the highest level of awards to be given an indefinite award but this should not be a prescriptive test. Within this, a client’s preferences should be a clear consideration, i.e. a case manager should always ask client’s about their preference for the length of award and make clear to clients when they are considering an indefinite award.

If during consideration of a client’s initial application or during a review a case manager felt that an indefinite award may be appropriate then, following discussion with the client, the case manager should be able to seek further information or evidence from the client, a health or social care practitioner, or a third party for that purpose. Since i is recommended that this be at the discretion of the case manager, it is not clear there is a case for making it mandatory for the case manager to seek the input of a health or social care practitioner in every case where an indefinite award is being considered.

Recommendation 4: Case managers’ consideration of circumstances where a fixed review period may be inappropriate and decisions on when to make an indefinite award should be influenced by clear guidelines, rather than highly prescriptive eligibility criteria.

Recommendation 5: If during consideration of a client’s initial application or subsequent review a case manager thinks an indefinite award may be appropriate the case manager should, following discussion with the client, be able to seek further information or evidence on this point. It should not be mandatory for the case manager to consult a health or social care practitioner in every case.

Rights to challenge and request a review.

As set out in our advice of 3 December 2018 on the duration of awards, it is important that a client is able to challenge any decision on their award review period, including any decision on whether or not to make an indefinite award. We would also suggest that it would be important for a client to be able to seek a review of their current award period at any time, especially in cases where a fixed award period may be inappropriate. We would, therefore, reiterate our earlier recommendation that all clients are given the right to request a review of their award at any time and note that the current considerations on indefinite awards help highlight why such a right is important.

Recommendation 6: It will be important to ensure that clients are able to challenge the award review period, including any decision to make or not make an indefinite award, through the normal redetermination and appeal processes.

Recommendation 7: All clients should have a right to request a review of their award at any time and this should include the right to request a review of their award period.

Recommendation 8: If clients are not to have a right to request a review of their whole award at any time, clients should be given the right to request a review of their award when they are on an indefinite award or where they feel a fixed term award is no longer appropriate.

Tailoring guideline criteria to different forms of assistance.

There are likely to be different considerations for when an indefinite award is appropriate for a client in receipt of Adult Disability Payment and a client in receipt of Pension Age Disability Payment. It may be that by taking a more holistic guideline criteria approach that there is sufficient flexibility to apply the same criteria to both forms of assistance. However, we would suggest there should be further consideration of the need for different criteria for Pension Age Disability Payment.

Recommendation 9: Further consideration should be made as to whether guideline eligibility criteria for indefinite awards would be the same or differ for Pension Age Disability Payment.

Financial risk: an appropriate balance?

As noted above, the Group would not support a strict requirement for a client to have had a set number of reviews before an indefinite award would be considered. From the information provided to the Group it would appear the main driver for this approach, and other suggested criteria, is a concern over potential financial risks associated with errors and overpayments when making indefinite awards. The Group would question whether there are any significant financial risks with making indefinite awards and stress the importance of distinguishing between financial risk and financial uncertainty.

Indefinite awards should be made in circumstances where a fixed review period would be inappropriate. So long as there is a robust decision-making process in place this should not result in clients receiving any payment they are not entitled to. Rates of fraud and error within the disability benefits system are understood to be low and it is not clear that indefinite awards would result in a substantial increase to what is already a low risk of fraud and error. Further, even where there may be some risk that someone on an indefinite award may have ended up on a different award had their case been reviewed at a certain time, there is only financial risk to the Scottish Government where the review would have correctly resulted in a decrease in the award level.

The paper provided by officials notes potential differing outcomes from DWP as a potential financial risk. Ensuring Scottish clients are on the correct awards and are not required to undergo unnecessary assessments, when this may not always be the case for DWP clients, is not regarded by the Group as a financial risk. While this may result in budgeting consequences due to the current fiscal framework arrangements, this is a financial uncertainty that must be managed through ensuring sufficient resources are allocated to cover disability assistance expenditure. Such uncertainty should not be managed by adopting policies and processes likely to result in clients undergoing unnecessary reviews or receiving lower awards than those to which they are entitled.

Any decision-making process, while robust, should not be so risk averse that it undermines the very principles of dignity, fairness and respect upon which the Scottish Social Security system is based. Further, when considering the potential costs of a particular policy the whole system costs should be considered. Any financial risk that may result from error or fraud needs to be balanced against the savings to the social security system from not having to undertake unnecessary reviews, savings from having better levels of trust and engagement from clients, and wider savings to health and social care budgets from effectively limiting the stress associated with assessments and reviews within the social security system.

Recommendation 10: consideration of financial risk in ensuring decision making frameworks are robust should always consider the full system costs, balancing benefits and risks, and should never undermine the principles of dignity fairness and respect.

Recommendation 11: to ensure that any consideration of financial risk is proportionate, any evidence that indefinite awards result in a significant financial risk should be published alongside the potential whole system costs and savings. This evidence should clearly distinguish between financial risk, which may need to be mitigated, and financial uncertainty, which should be managed by ensuring sufficient resources are allocated to cover benefit expenditure.

Recommendation 12: While financial risk may be a consideration in ensuring decision making frameworks are robust, financial risk should never be a factor for case managers when considering an indefinite award in an individual case.

Transparency, guidance and training.

From the Group’s experience, many disabled people do not trust the existing award review process. The Group believes that applying the Social Security Principles in practice will lead to better implementation of a rights based social security system in Scotland – including award reviews – and therefore improved experiences for disabled people.

Key to this will be ensuring all parties have a clear understanding of how the review process will be experienced by clients. The process for designing decision making processes and how they then function will need to be communicated clearly and transparently.

Further, from the information provided it was suggested that a second check may be required where a case manager wished to make an indefinite award. If this additional check were to be put in place it will be important to ensure as much consistency in decision making as possible. If case managers’ initial decisions were known to be regularly overturned then this could increase clients’ anxieties about reviews and damage trust in the process.

We welcome the proposal that clear guidance is provided to case managers on the eligibility criteria for indefinite awards and that the guidance will undergo a quality assurance process, including being tested by case managers, with input from stakeholders such as welfare rights officers and those directly affected. This could utilise existing Experience Panels and would also ideally build on these through DPOs and Carer controlled organisations which offer breadth, depth and more participative models of involvement. A programme of direct face-to-face and online training of case managers should also be developed, co-designed and delivered by those with lived experience of impairment and of undergoing reviews in the disability benefits system. 

By supporting people with lived experience and providing information briefings, peer support and capacity building, the people affected can have more meaningful dialogue and deliberation and could support continuous improvement by coming to more effective policy solutions - and co-designing these if the opportunity exists – in developing the framework and in addressing issues that arise once the framework starts to be used in practice. This would help to increase the knowledge of case managers and help to reduce the risks of prejudice and unconscious bias.

It may also be helpful if this process also aimed to increase knowledge and awareness of fluctuating conditions and how these would need to be considered by case managers in deciding whether an indefinite award would be appropriate for a client. As you will be aware, there is a distinction between fluctuating conditions, where a person may be well for long periods, and those that change on a day to day basis. Our experience suggests there is only partial understanding of these conditions among policy-makers as well as among the medical professionals involved in supporting policy development. The proposal for assessors to be suitably qualified in particular conditions will be important in this respect.

Recommendation 13: Guidance on the guideline eligibility criteria for indefinite awards should be developed, reviewed and updated with input from people with lived experience of impairment.

Recommendation 14: A programme of on-going training for case managers focusing on input from those with lived experience of impairment and of undergoing reviews in the disability benefits system should be developed alongside the guidance on the guideline eligibility criteria.

Recommendation 15: Ensuring assessors are suitably qualified in particular conditions and developing a programme of training to increase awareness and understanding of fluctuating conditions should be developed alongside the guidance on the eligibility criteria for awards.

Recommendation 16: Ensure that the processes around consideration of indefinite awards, including the eligibility criteria, the timing and purpose of any review, and circumstances in which additional supporting information will be requested are clearly communicated.

Recommendation 17: Ensure the rights of the client challenge decisions on whether or not to make an indefinite award are communicated clearly.

Conclusion

Overall, we support Social Security Scotland’s ambition to developing a consistent and transparent framework for making indefinite awards that is based on a holistic overview of client’s needs. We hope our recommendations on areas for further consideration will help achieve this outcome.

Recommendations

Please see below our key recommendations: 

• recommendation 1: officials may wish to look again at including consideration of certain impairments or conditions as a proxy indicator for a likely level and pattern of disadvantage and therefore suitability for an indefinite award

• recommendation 2: consideration of when a set review period may be inappropriate, and that an indefinite award should be made, should not be limited to clients on the highest award levels

• recommendation 3: case managers should be able to consider whether a fixed term review period is inappropriate, and therefore an indefinite award may be appropriate, at application stage as well as when reviewing a client’s case

• recommendation 4: case managers’ consideration of circumstances where a fixed review period may be inappropriate and decisions on when to make an indefinite award should be influenced by clear guideline, rather than prescriptive, eligibility criteria

• recommendation 5: if during consideration of a client’s initial application or subsequent review a case manager thinks an indefinite award may be appropriate the case manager should, following discussion with the client, be able to seek further information or evidence on this point. It should not be mandatory for the case manager to consult a health or social care practitioner in every case

• recommendation 6: it will be important to ensure that clients are able to challenge the award review period, including any decision to make or not make an indefinite award, through the normal redetermination and appeal processes. 

• recommendation 7: all clients should have a right to request a review of their award at any time and this should include the right to request a review of their award period

• recommendation 8: if clients are not to have a right to request a review of their whole award at any time, clients should be given the right to request a review of their award when they are on an indefinite award or where they feel a fixed term award is no longer appropriate

• recommendation 9: further consideration should be made as to whether guideline eligibility criteria for indefinite awards would be the same or differ for Pension Age Disability Payment

• recommendation 10: consideration of financial risk in ensuring decision making frameworks are robust should always consider the full system costs, balancing benefits and risks, and should never undermine the principles of dignity fairness and respect

• recommendation 11: to ensure that any consideration of financial risk is proportionate, any evidence that indefinite awards result in a significant financial risk should be published alongside the potential whole system costs and savings. This evidence should clearly distinguish between financial risk, which may need to be mitigated, and financial uncertainty, which should be managed by ensuring sufficient resources are allocated to cover benefit expenditure

• recommendation 12: while financial risk may be a consideration in ensuring decision making frameworks are robust, financial risk should never be a factor for case managers when considering an indefinite award in an individual case.

• recommendation 13: guidance on the guideline eligibility criteria for indefinite awards should be developed, reviewed and updated with input from people with lived experience

• recommendation 14: a programme of on-going training for case managers focusing on input from those with lived experience of impairment and of undergoing reviews in the disability benefits system should be developed alongside the guidance on the guideline eligibility criteria

• recommendation 15: ensuring assessors are suitably qualified in particular conditions and developing a programme of training to increase awareness and understanding of fluctuating conditions should be developed alongside the guidance on the eligibility criteria for awards

• recommendation 16: ensure that the processes around consideration of indefinite awards, including the eligibility criteria, the timing and purpose of any review, and circumstances in which additional supporting information will be requested are clearly communicated

• recommendation 17: ensure the rights of the client challenge decisions on whether or not to make an indefinite award are communicated clearly

I hope this is helpful. I look forward to your response and we would be pleased to discuss this further with officials.

With best wishes,

Dr. Jim McCormick, Chair