Disability and Carer Benefits Expert Advisory Group - Adult Disability Payment decision report: advice

We were grateful for the request made by your officials to provide advice on the decision report design for Adult Disability Payment. While we appreciate this is outwith our agreed programme of advice, we hope you find it useful as some of the more granular parts of disability benefits policy are realised. 

We welcome the commitment by the Scottish Government to ensure safe and secure delivery of the newly devolved benefits, and to improve the application and decision making 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 offer proposed solutions. 

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 November 2021 to discuss this issue. We would like to especially thank the officials who worked with us in this 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

Scottish Government officials leading on developing the decision report for Adult Disability Payment provided us with a draft example of the decision report and a comprehensive overview at our meeting on 10 November 2021. The presentation covered:

• decision making generally
• an overview of the decision report sections
• an overview of the decision breakdown summary
• an overview of activity justifications
• next steps

The Group welcome the opportunity to set out what they hope to see reflected in the decision report design and wider Social Security Scotland communications to clients. Our discussions have highlighted a number of areas for further consideration that we hope will help officials in finalising the decision report and wider decision making for disability assistance.   

We were pleased to hear about the significant user testing and stakeholder engagement that has been completed during the development of the decision report. 

We welcome the ongoing involvement of users of the system being included in its design and note the significant improvements on the current DWP decision report. General language and phrasing used is easier to understand and the overall layout and ordering makes this decision report simpler to navigate. There are however a number of areas where we would recommend further improvements.  

Decision report content

We have reviewed the draft example decision report that was supplied by officials and have made a number of suggestions for amendments to the content. This includes detailed comments on ordering, specific language and phrasing. 

Some key issues to highlight include:

• there are three instances where the word ‘backdated’ is used which the Group does not believe is correct. As currently used it refers to money owed to the claimant from the date of their application and is therefore arrears, not backdating of an award which refers to an award beginning from an earlier date (pages 1, 6 and 14)
• the decision report repeats the same financial and monetary information three times which the Group feels is unnecessary (pages 1, 6 and 14)
• there is reference made to awards being condition-based, when they are in fact based on the care and mobility needs arising from conditions (page 3)
• the phrasing around re-determinations and appeals could be interpreted in a number of different ways resulting in incorrect understanding. The Group has suggested an alternative layout and phrasing (page 15)

Human rights based approach

Although we understand that the decision making process and therefore the decision report will still make use of the PIP deficit and points based system, we would recommend the introduction of more equality and rights based language. For example, in the Decision Breakdown section, specifically 'Daily Living Needs' 'Activity 1: Preparing food' - "We understand that you need help in preparing food...." could be rephrased to "We understand that in order to enjoy your right to food and an adequate standard of living that ....".

This would go some way to contribute to the commitment of building a social security system consistent with advancing human rights, moving away from a needs based, deficits based medical model to a rights based approach as per the Convention on the Rights of Persons with Disabilities (UNCRPD). 

Recommendation 1: Language and phrasing used within the decision report should move away from a deficits-based medical model to reflect a human rights based approach. 

Consistent with moving to a human rights based approach, the Group discussed the limitations of the current Adult Disability Payment points based system, focusing particularly on the 50% rule. According to this rule, if a condition does not affect individuals half of the time, then this can be disregarded or ignored for the purposes of decision making on disability benefit entitlement. As a result, when individuals have a variable condition, they may not need help at least half of the time but they still live with the condition every day which the 50% rule ignores. 

The Group discussed the specific example of an individual with epilepsy. They may not have had a seizure for 18 months and therefore will not meet the 50% rule, but they still live with the condition which impacts their daily living. The current points based system does not take into account daily challenges such as being unable to apply for a drivers’ license, limiting kinds of employment they can undertake like operating heavy machinery or work hours or frequently changing shifts increasing the likelihood of having a seizure.  

While the Group appreciates the necessity of parity with reserved benefits for purposes of the safe and secure transfer, DACBEAG will cover this issue in more detail and provide a number of related recommendations for moving beyond a safe and secure transfer in our proactive advice which we aim to share with you by the end of the parliamentary year. 

Equality

We have welcomed the use of Experience Panels and are pleased to see participants are being supported to share their experiences and views to shape the design of the new social security payments. We have also previously welcomed proposals to boost participation by engaging with seldom-heard groups. Although we have received updates on how Experience Panels have broadened, we have not yet seen robust equalities data or received assurance that this has been fully achieved. We therefore remain concerned that a number of protected characteristics remain significantly under-represented during user testing.

This was reflected by the Group in our dedicated advice on equalities analysis of 6 July 2018:

We have welcomed updates on how Experience Panels have been recruited and how participants are being supported to share their experiences and views so far. We welcome, too, ongoing proposals to boost participation by engaging with seldom-heard groups. However, we are also aware that this approach needs to rest on a foundation of consistently good equalities data and we remain concerned that the ethnicity of panel members, among other types of equalities information, does not appear to be collected. We acknowledge the reasons for approaching equalities data with sensitivity at all stages, but would encourage officials to take further steps to address under-representation by ethnicity and other protected characteristics.

This remains an ongoing concern that we have raised around representation and participation a number of times. We therefore seek the assurance that action has been put in place to address these points and would welcome regular updates on the steps being taken to strengthen equalities participation and data in order to improve policy and decision making. Additionally, as the decision report has been through multiple rounds of user testing, it would be helpful to understand if the same group of individuals was consulted on the design at each stage, or if new individuals were introduced as the testing progressed.      

Recommendation 2: The decision report design should be user tested with seldom-heard groups covering all protected characteristics in sufficient numbers as well as organisations supporting these groups. It should also cover all possible accessibility needs, consistent with the Six Principles of Inclusive Communication with individuals able to request this at the very beginning of the user testing journey.  

Resources

As outlined above, the Group is pleased to see such descriptive decision reports which are a considerable improvement on those currently provided by the DWP. However, we do have concerns that this level of information will be more time consuming for Social Security Scotland to prepare and any shortage of resource will increase the time taken for decisions and these reports to be made available to those who have applied.

Additionally, we have some concerns about how lengthy an Easy Read version of this report will be. These will likely provide a daunting length for someone with learning difficulties which are a substantial proportion of the Adult Disability Payment caseload. We also would hope that Easy Read versions will not lose any of the crucial detail needed to support re-determinations and appeals if the standard decision report is simplified. The Group think that testing and gaining insights from Disabled People Organisations that support and represent those with learning difficulties are valuable as well as gaining the learned experience of users of the service themselves on this issue. This should be an ongoing process that continues after the payment is launched to continually refine the decision report and remove anything that is not deemed necessary by users. 

Recommendation 3: Social Security Scotland should be appropriately resourced to ensure decision reports and Easy Read versions can be compiled in a timely manner so as not to delay benefit decision letters and negatively impact clients. 

Recommendation 4: Easy Read decision reports should be designed in collaboration with both users and relevant supporting organisations to ensure sufficient detail is balanced with a document length that will be accessible. 

Recommendation 5: Decision reports and their accessible format versions should be continually refined after launch with continued input from users with experience of the system. This should include removing any detail that is deemed unnecessary to reduce the overall length of decision documents. 

Supporting information

Officials outlined that due to technical constraints of the case management system the Adult Disability Payment decision report will only show a short descriptor list of the supporting information that has been used to make a benefit decision including details of its source and the date it was received by Social Security Scotland. The ‘share more information’ section of the decision report will explain how this was used for decision making. Whilst client authorisation is required to seek this supporting information, the client will not have seen this via Social Security Scotland as standard before their decision is made. The client will have to request all of this information separately should they wish to be provided with it in full. 

We have previously provided advice on Decision Making and Consultations on 14 April 2020 following officials attending our quarterly meeting on 27 February 2020. As part of that advice we made this recommendation:

We welcome the commitment that Social Security Scotland will collect supporting information from third parties on the claimant’s behalf upon request. That said, when a claimant makes such a request, we believe the claimant should be able to see what information that third party provides. Ideally, the claimant should be able to see the information the third party intends to submit before it is actually sent to Social Security Scotland.   

This, of course, must be balanced with ensuring clients receive quality decisions as quickly as possible. 

Recommendation 11: Supporting information sent by third parties to Social Security Scotland at a claimant’s request should be immediately available for review by the claimant. This must be balanced with ensuring quality decisions are made quickly.

On balance, we agree that every piece of supporting information being contained within the first decision letters/decision report is not a necessity as this could create very large, potentially confusing bundles. However, we do believe that representatives of clients or clients themselves should be able to easily and quickly get copies of supporting information from Social Security Scotland, particularly as this will likely influence decisions about whether to pursue a re-determination or appeal which have legislative timescales attached.

This could also prevent re-determinations being requested without any specific reason, meaning they will be more focused and therefore potentially less time consuming for Social Security Scotland. In turn, changing decision at re-determination stage has potential to reduce the number of cases that go to the appeal stage. This would save tribunal services costs, reduce processing time in Social Security Scotland and reduce the stress on the client. 

Recommendation 6: If a client requests a re-determination, all supporting information used to make the first decision should be sent to the client, otherwise this could present a barrier to justice and an unnecessary hurdle for clients. Alternatively, if a client requests to see all of the supporting information used to make their benefit decision, the timescales for requesting a re-determination should start from the date that the evidence was sent to the client or the time taken to provide the evidence should count as good cause for any late application for a re-determination.

A holistic support system with fully integrated services

Within our Disability Assistance for Children and Young People advice provided 19 July 2019 we recommended the following after taking part in a number of consultation sessions with legacy Child DLA applications and recipients, mostly parents and carers of disabled children and young people, as well as some who had their claims rejected: 

A claim for disability assistance should be part of a larger ‘holistic assessment’ and trigger referrals to other sources of support. Social Security Scotland should ensure:

• clear information about rights and entitlements to other social security payments and services
• information and signposting to Advocacy services, with clarity on how disabled children, young people and families can use appropriate advocacy support to navigate the system
• active referral pathways so that disabled children, young people and their carers can be referred to all appropriate services (including education, health, housing and transport) with monitoring of the effectiveness of different referral strategies (e.g. sign-posting, appointment referral, co-located and embedded support in local settings) and take-up

This same recommendation also applies in the context of the Adult Disability Payment decision report and beyond. Operational and decision making guidance should reflect that if at any decision making stage an unresolved or unmet need is identified, other forms of support should be signposted or actively referred to.

Related to this, group members are aware of a current DWP pilot which sees clients appointed a single case manager to support them through the benefit application process, for example advising them on sources of evidence that may be helpful for particular conditions. These case managers are not decision makers and are trained to signpost applicants to other benefits and relevant support within their geographic area. The Group believes that this service should be replicated in Scotland by Social Security Scotland’s Local Delivery function, on a pilot basis to start with. The Group is aware of limited capacity and very significant levels of unmet need.  

Recommendation 7: The DWP pilot service supporting clients through the benefit application process and signposting applicants to other benefits and relevant support within their geographic area should be replicated in Scotland.

Recommendation 8: The decision report should contribute to a larger ‘holistic assessment’ and signpost or refer clients to other agencies and services that are most relevant to them. 

This recommendation of the full integration of services and social security being joined up with other sectors such as health and social care, education, employment and housing is another area the Group will cover in more detail in our proactive advice going beyond a safe and secure transfer which we plan to share with you by the end of the parliamentary year. 

Medical guidance 

We were grateful for the brief update provided by officials on the progress of the Medical Guidance resource and would welcome a further update when it is an appropriate time to do so. 

Conclusion 

Overall we are extremely pleased to see the proposed Adult Disability Payment decision report with such significant improvements on the current DWP decision letters. This easier to understand example gives us confidence that this has been designed in line with the principles set out in the Social Security (Scotland) Act, although we seek further assurance on how the Scottish Government is taking a comprehensive approach to embedding Equalities and Human Rights. We hope our recommendations on areas for further consideration both in the shorter term and for beyond a safe and secure transfer are constructive for your officials. 

Recommendations

Please see below our key recommendations.

Recommendation 1: Language and phrasing used within the decision report should move away from a deficits based medical model to reflect a human rights based approach. 

Recommendation 2: The decision report design should be user tested with seldom-heard groups covering all protected characteristics in sufficient numbers as well as organisations supporting these groups. It should also cover all possible accessibility needs, consistent with the Six Principles of Inclusive Communication with individuals able to request this at the very beginning of the user testing journey.  

Recommendation 3: Social Security Scotland should be appropriately resourced to ensure decision reports and Easy Read versions can be compiled in a timely manner so as not to delay benefit decision letters and negatively impact clients. 

Recommendation 4: Easy Read decision reports should be designed in collaboration with both users and relevant supporting organisations to ensure sufficient detail is balanced with a document length that will be accessible. 

Recommendation 5: Decision reports and their accessible format versions should be continually refined after launch with continued input from users with experience of the system. This should include removing any detail that is deemed unnecessary to reduce the overall length of decision documents. 

Recommendation 6: If a client requests a re-determination, all supporting information used to make the first decision should be sent to the client, otherwise this could present a barrier to justice and an unnecessary hurdle for clients. Alternatively, if a client requests to see all of the supporting information used to make their benefit decision, the timescales for requesting a re-determination should start from the date that the evidence was sent to the client or the time taken to provide the evidence should count as good cause for any late application for a re-determination.

Recommendation 7: The DWP pilot service supporting clients through the benefit application process and signposting applicants to other benefits and relevant support within their geographic area should be replicated in Scotland.

Recommendation 8: The decision report should contribute to a larger ‘holistic assessment’ and signpost or refer clients to other agencies and services that are most relevant to them.

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