Disability and Carer Benefits Expert Advisory Group - beyond a safe and secure transfer: advice

2. Review of disability benefits

In our advice on Adult Disability Payment, formerly Disability Assistance for Working Age People (DAWAP), in December 2019^[14], the Group recommended the following:

'The Scottish Government should set, in law, a regular review date to re-examine DAWAP [now Adult Disability Payment]. The first date should be within the next three years. This should require a consultation with people claiming DAWAP, relevant bodies and key stakeholders to explore what more significant changes could be made to DAWAP in light of evaluation evidence and a better understanding of the relationship between reserved and devolved benefits.'

We are pleased that the Scottish Government plans to set up an independent review of ADP in summer 2023, one year after the national launch of ADP. We believe the following general areas should form the basis of the review: the assessment process; the eligibility criteria; the adequacy of payments; the interactions between disability benefits; and ages of awards. We wish to highlight several related issues at this stage.

Recommendation 12: The Scottish Government should commit to a further fundamental review of disability assistance covering Child Disability Payment, Adult Disability Payment and Pension Age Disability Payment.

2.1 Purpose of the independent Adult Disability Payment review

It is well understood that the reform from DLA to PIP was to reduce the cost of welfare by 20%.^[15] This Group wishes to make clear that any similar purpose of this ADP review would be entirely contradictory to the human rights-based approach set out within the Social Security Principles.

We believe, in relation to understanding the scope of any review, the Scottish Government should set out what the purpose of the review is, and specify what they want to explore. We believe that it should be made explicit what processes will be in place for lessons learned to be incorporated into the system, to make improvements, and influence change.

The purpose of the review should also be approached in terms of trust and confidence in the process. If people are going to be continually consulted on this topic, change has to be implemented to prevent trust being damaged. Therefore, the Scottish Government should outline what their commitment to any review is before it is completed, and what they intend to do with any results.

The recommendations from this review should move us closer to a social security system which follows the social model of disability, with equalities and human rights as the main drivers.

Recommendation 13: The Scottish Government should make clear the purpose of the proposed review and outline how the results will be actioned.

At Appendix A we have highlighted a number of publicly available review reports that can be regarded as examples of promising practice. Different elements of each could be replicated in the upcoming independent Adult Disability Payment review.

2.2 Scope of the independent Adult Disability Payment review

Recommendation 14: Prior to the 2023 ADP review commencing, the Scottish Government should share what the scope of the review will be.

Stakeholder views should be sought on the Scottish Government's plans with an acknowledgement that the mobility component of ADP will be reviewed in 2022.

During the development of this advice, we defined a number of items we suggest should be in immediate scope for this review in 2023.

Recommendation 15: The following should be in the immediate scope of the 2023 review:

15a: The review should identify advantages and challenges of Adult Disability Payment. This should be with insights from those with lived experience and cover the entire benefit process. Evidence should be provided from both successful and unsuccessful applicants.

15b: The review should assess disability assistance through the lens of the social model of disability, equality and human rights law, principles and standards. It should include an analysis of how equality, human rights and the social model have been taken into account with the design of the system, and what needs to change so that it can best reflect these.

For example:

1. references to the right to social security;

2. the right to an adequate income;

3. the right to fully participate in family, community and economic life;

4. the right to independent living;

5. relevant human rights principles that are a core component of the right to social security, including minimum core, maximum available resource, progressive realisation, and non-retrogression^[16];

6. UNCRPD rights; and

7. UNCRC General Comment No. 19 etc^[17].

This should also analyse the Scottish system against the Equalities Framework and the Fairer Scotland Duty^[18].

15c: A full review of the eligibility criteria that includes an analysis of whether this new system is a world leading human rights-based system of disability social security. This should include an assessment of whether it enhances attainment of human rights, including those contained within the ICESCR, UNCRPD and UNCRC.

It would be helpful to identify if there are other countries that have disability and carer benefits or assistance schemes that follow a truly rights-based approach that could be used as good practice examples. Further details of our own engagement on this are covered at the 'Other models of social security: international comparisons' section later in this document.

15d: A full review of the activities and descriptors that determine entitlement. This should be towards ensuring that regardless of an individual's conditions, they can get the assistance they require.

We are aware that some groups, such as those with fluctuating and variable conditions, mental health conditions and learning difficulties are unable to get the support they need from the current disability system. These barriers must not be replicated in the Scottish system. This review should also take into account developments in UK case law related to activities and descriptors.

15e: A full review of the assessment process, guidance for assessors and the decision-making guidance to ensure a social and rights-based model of disability is applied.

This should truly reflect that decisions are not based on a diagnosis, but based on the impact of impairments on everyday life. Many variable conditions do not fit within an either/or scenario. This should make use of data and evidence gathered from the system.

15f: A review of the funding of Social Security Scotland. This should include an analysis of the adequacy of benefits.

Adequacy of benefits should be analysed in terms of measured and published poverty thresholds and minimum income standards. The amount of payment when given an award should be sufficient to meet the defined purpose.

Whilst the Group is keen for the scope of this review to be appropriately wide, we believe that it is essential for the Scottish Government to commit that any changes made as a result of the review do not result in detriment to any current claimants. As noted above, policy changes should not be driven by reducing eligibility or entitlement. Re-assessment criteria should take this point into consideration and should not have a negative impact on any current entitlements.

As more groups of disabled people are recognised and there is a widening understanding of disability, this has to come with the acceptance that this will come with increased awareness, take-up costs and benefits. We can do much more to reduce the transactional costs, time and frustration between fragmented systems through greater embedding of social security advice where people access other types of support.

15g: An analysis of whether improvements can and should be implemented more quickly, before the completion of case transfer.

There needs to be a balance struck between implementing improvements as quickly as possible and additional complexity introduced to the system as a result of any changes made during the 'transfer window'. Changes can be made, but this could bring risk. For example, eligibility changes could negatively affect passported supports from the reserved system or cause a more complex decision-making process as a result of a fragmented system.

Although these present risks to overcome, we do not believe this should be the reason for not implementing any improvements quickly, before the completion of the 'safe and secure transfer'. By the time any of the devolved benefits are launched, and then embedded, it could be another several years into the future before any changes are made. We should be considering, what is the risk of not making improvements now?

Progressive realisation is a core component of economic, social and cultural rights like the right to social security. The UN notes that, "States are required to progressively achieve the full realisation of these rights over a period of time. Regardless of resource availability, States have an immediate obligation to take appropriate steps to ensure continuous and sustained improvement in the enjoyment of these rights over time.^[19]

The Scottish Government could consider ways to overcome the risks presented. For example, implementing transitional payments to bridge the inequality created by introducing changes to the eligibility criteria.

The Group also identified a number of issues that we believe the Scottish Government should commit to reviewing in the medium to longer term, acknowledging that the 2023 independent review of Adult Disability Payment is not the end of the process.

Recommendation 16: On an ongoing basis and beyond the 2023 review the Scottish Government should:

16a: Collect, analyse and report rights-based data used to make decisions.

This should be used to identify if there are specific conditions or impairments that are regularly not awarded payments. If this is the case, it should be investigated - if decisions are made based on impact and need rather than medical diagnosis, then why is this happening? This should also be used to report on the accuracy of decision making. At present, we have heard that under the current PIP system specific conditions or impairments are regularly not awarded payment as a result of decision makers not taking into account the impact on daily living.

16b: As well as using data that exists, there should be a review to identify existing data gaps.

From this it should be concluded what these data gaps mean.For example, currently in the DWP system, data is interrogated based on the gender and age of those awarded disability benefits but not on the basis of ethnicity and race. We would like to understand if this will be addressed in the new Scottish system as it is currently difficult to establish whether Black, Asian and minority ethnic people face systemic discrimination in the assessment process.

16c: When making policy decisions, the financial analysis should extend beyond just the cost of implementing the benefit. This should assess the wider cost ofnot implementing it on other areas of the system. This should also go beyond the financial costs to include the wider benefits for the individual and society.

This could include health, wellbeing, self-worth, family and community cohesion. This would go beyond the 'business case' to support individuals in attaining their rights. We understand that this does not happen currently and we believe that it should.

For example, significant financial implications was one of the risks identified in introducing a mobility component to Pension Age Disability Payment.^[20] However, there was no cost analysis provided on the impact of not introducing the mobility component on individuals, their families, and the wider system. The costs incurred due to severely reduced mobility, which can increase loneliness and social isolation, affect people's health, wellbeing and self-management, and leave them to rely – if they can – on support from others to shop, attend appointments, and so on could be more significant.

16d: Review, analyse and report on how policy makers have taken the human rights focused Social Security Principles in the Social Security (Scotland) Act 2018 into account in decision making. This should also detail to what extent this has, and continues to, inform the development of the system.

The Group would expect this to include information on the framework used, and whether equal consideration is given to all the Social Security Principles in the 2018 Act. If not, what is the priority among them and why? This comes from the Group's ongoing concern that the principle of efficiency and value for money is prioritised over the poverty reduction, take-up, human rights, equality, and non-discrimination principles. Therefore, a clearer sense of the role of the principles in decision making and an understanding of the framework against which they are checked would be helpful, in the same way as was done for EQIA.

16e: Carry out an independent evaluation of the Experience Panels, how they are made up in terms of the protected characteristics represented, and how 'well' they work. This should identify if there are any seldom heard voices still missing from the Experience Panels and what action will be taken to amend this.

We believe that Experience Panels should include participants from all impairment types/groups, including those who have historically struggled to be identified as disabled due to stigma. For example, those with mental health conditions and energy limiting conditions. Disability is a very heterogeneous category of experience and there should be inclusive representation of the range of impairment experiences.

2.3 Process and methods for the independent Adult Disability Payment review

The processes followed and methodologies used for any review are just as important as the identified scope. These should involve an entire spectrum of stakeholders, including front line workers and organisations supporting individuals through the system, with a range of rights based participatory methodologies used.

Recommendation 17: The review should be co-produced with disabled people and human rights experts and gather evidence from a wide range of people across the social security system.

For example this should include:

1. people accessing the social security system;

2. people trying to access the social security system;

3. people working in the system including Welfare Rights workers;

4. policy makers;

5. National Human Rights Institutions (NHRIs); and

6. civil society organisations.

With the knowledge that this review will be in 2023, this provides an opportunity to make use of surveys, diaries and relevant mobile apps to collect data from now. These tools should be deployed to relevant individuals to capture lived experience and gain an understanding of how people are actually experiencing the process.

When considering both who data is captured from and who data is analysed by, this should specifically acknowledge intersectionality and be based on lived experiences of the process of caring and disabled people. This should involve a diverse group.

Recommendation 18: The processes followed and methodologies employed for the review should be appropriately diverse. They should follow a human rights based approach grounded in the PANEL principles.

Recommendation 19: The review should have an advisory group or panel of reviewers. It should be co-chaired, rather than led by a single independent professional.

2.3.1 Anonymity of contributors

People need to feel safe and have no fear of negative consequences as a result of being involved in any review. This should be regardless of whether they are organisations, people applying or independent advocacy groups. If contributors are involved in or employed by the social security system or reliant on public funds, they should experience no negative consequences as a result of participating. Their participation should be appropriately recognised and rewarded.

Recommendation 20: All contributors to the review should have the option to remain anonymous and receive the assurance that participation will not result in any negative consequences.

2.3.2 Resources

Involved and participating stakeholders should have additional resources allocated and be paid for their time, with expenses covered as a bare minimum. Staffing should include professionals to support families involved in the review process. All necessary accessibility support should be provided and covered financially too.

Recommendation 21: The review should be fully resourced, both in terms of finances and staffing.