Disability and Carer Benefits Expert Advisory Group - transition from Child Disability Payment to Adult Disability Payment: response from ministers

Dr Jim McCormick
Chair
Disability and Carers Benefits Expert Advisory Group
c/o Scottish Government

22 February 2023

Dear Jim,

Thank you for your letter dated 26 October 2022 regarding the transition from Child Disability Payment to Adult Disability Payment. I know that you have also had constructive discussions with officials, and we welcome your feedback.

I have considered your helpful recommendations and am pleased to confirm that I am supportive of most of them. I note that DACBEAG would have advised that we take a slightly different approach to the process of clients moving from Child Disability Payment to Adult Disability Payment had it provided its advice in advance of the Adult Disability Payment regulations being laid. Before addressing each recommendation individually, I want to provide reassurances around the approach taken and our reasons for doing so.

As you know, the differences between Adult Disability Payment and Child Disability Payment eligibility criteria mean that additional information will often be required to ensure the right decision on entitlement to Adult Disability Payment is made. In a person centred system it is very challenging to standardise the quantity and nature of the information needed. For some clients there could be significant gaps in the pre-existing information available which is relevant to the Adult Disability Payment criteria. Importantly, the Adult Disability Payment application form has been thoughtfully designed to elicit the most pertinent information from clients, with the intention of reducing the need for further information to be obtained.

These factors informed my view that moving to Adult Disability Payment without the need for an application could present an unnecessarily complex and arduous journey for many clients. Social Security Scotland therefore require clients in receipt of Child Disability Payment to complete a new application for Adult Disability Payment, but with significant support available to them, as well as flexibility in when and how to apply.

I consider that this approach ensures a more consistent and less complex process, and will ensure clients receive the right award, without experiencing any break in payment. The process has been designed in the interests of all Child Disability Payment clients, taking into account the diverse range of needs among young people who are moving to adult services.

I hope you find further reassurance in my responses to each recommendation below.

Continuation of the Child Disability Payment award

Recommendation 1: Social Security Scotland should clearly communicate to individuals that they will retain their entitlement to Child Disability Payment until a positive Adult Disability Payment determination is made.

I accept this recommendation.

Reasoning

I am grateful for the group’s support for our approach to maintain a client’s Child Disability Payment award before their 18th birthday until a positive determination is made for Adult Disability Payment. This provides clients with the security of knowing that if they are not entitled to Adult Disability payment, they will continue to receive the Child Disability Payment that they are entitled to. 

There is extensive support and advice available to clients undergoing this process. Support is available through a choice of channels and information on mygov.scot clearly communicates this process.

Transition principles and guidance to case managers

Recommendation 2: Further consideration should be given on how to clearly incorporate the transition principles, including the human rights and equalities considerations that informed them, into communications about moving from Child to Adult Disability Payment.

I accept this recommendation.

Reasoning

A range of measures are in place to ensure the process at this key transition point accords with the values of dignity, fairness and respect and is as straightforward as possible for clients. There is a single, secure, digital portal to apply for Adult Disability Payment, update information quickly and check eligibility, with alternative channels for those who are unable to use the digital portal or who do not wish to use it. The provision of clear and accessible guidance, and of choice and flexibility in how to apply and how to communicate with Social Security Scotland, is designed to minimise the burden on clients and align with the principles and recommended approaches set out by the UN Office of the High Commissioner’s recommendations referenced in DACBEAG’s advice.

Furthermore, the Local Delivery service provides in-person support, with staff located across the country. This service helps clients understand what assistance they may be entitled to and facilitate the application process to Adult Disability Payment if clients wish. Local Delivery staff support clients in places most convenient to them – including their own homes, venues in their local community, hospitals, care homes and prisons to reduce the demands on clients moving from Child Disability Payment to Adult Disability Payment.

Individuals are also entitled to the support of an independent advocacy worker if they need help applying for Adult Disability Payment. Social Security Scotland staff are able to refer clients to a suitable, independent advocacy provider. Neither Social Security Scotland nor the Scottish Government will have any role in the service provided, ensuring that it is fully independent.

Our benefit take-up strategy encourages people to take up the payments that they are entitled to. The strategy is informed by people with experience of the social security system and expertise from the third sector and Local Authorities. Actions to increase take-up will continue to be informed by these voices as they are implemented.

Recommendation 3: Guidance for case managers on supporting clients through the transition process should be improved to clearly set out human rights and equalities obligations on case managers and be informed by the transition principles. This should be supported by training and learning opportunities.

I accept this recommendation.

Reasoning

Guidance and training for case managers sets out the rights of clients in relation to their entitlement to Child Disability Payment and Adult Disability Payment. This guidance has been developed in conjunction with stakeholders. Lived experience is fundamental to the training delivered by Social Security Scotland’s Learning and Development team and is woven through the learning materials where appropriate. The learning new staff receive includes inputs from people with experience of the social security system and has been developed with partners including Health and Social Care Alliance Scotland (the ALLIANCE) and Public Health Scotland.

For both Child Disability Payment and Adult Disability Payment, Social Security Scotland make use of findings from user research, including quotes from clients, when designing learning modules. The guidance and learning modules relating to the process of moving from Child Disability Payment to Adult Disability Payment are informed by the principles underpinning our approach and set out in DACBEAG’s advice. Learning modules are continuously evaluated to ensure they meet the needs of the service and our policy intent, and improvements are made where appropriate.

In view of the fact that people become responsible for managing their own benefits from the age of 16 (where they have capacity to do so), communications relating to moving from Child Disability Payment to Adult Disability Payment will be timed to take place after this milestone. This means that, wherever possible, young people are empowered to decide whether and when to move to Adult Disability Payment.

Recommendation 4: Accessible information should be provided to clients to inform them of the support they can expect through the transition process.

I accept this recommendation.

Reasoning

It is vitally important that clients know what to expect from the application process and have a clear understanding of their rights at every stage. Mygov.scot and invitation letters sent to clients from Social Security Scotland contain information about support available to clients who are moving from Child Disability Payment to Adult Disability Payment. This includes information on how to contact Social Security Scotland, links to independent advice organisations, and contact information for the independent advocacy service.

Social Security Scotland can also provide this information in other formats where requested, such as large print, braille, or translated into other languages.

Rights based and person-centred approaches

Recommendation 5: The transition process should be developed for the benefit of the people who engage with it, taking both a rights-based and person-centred approach.

I accept this recommendation.

Reasoning

The process has been designed to cause as little disruption as possible for clients, to provide consistency and financial security.

There is a tailored process for clients applying for Adult Disability Payment from Child Disability Payment. Where a client is entitled to a higher rate of Adult Disability Payment than the Child Disability Payment they were previously entitled to, their first payment of Adult Disability Payment will be increased so as to ensure they are not disadvantaged compared with clients who apply for Adult Disability Payment without previously receiving Child Disability Payment.

Furthermore, subject to Parliamentary timetabling and consent, I am currently planning to amend the Child Disability Payment and Adult Disability Payment regulations to reflect user research which indicated that the priority for clients is being able to accurately plan their finances around the day they receive their benefit payments. In line with a person-centred and rights based approach, this amendment will ensure that, where a client on Child Disability Payment becomes entitled to Adult Disability Payment, they receive their Adult Disability Payment on the same date that their Child Disability Payment was previously paid. This change will ease the transition between Child Disability Payment and Adult Disability Payment for these clients and will provide them with financial continuity. The steps we are taking to support clients undergoing this process therefore align with Social Security Scotland’s principles of dignity, fairness and respect and our view of social security as a human right.

Recommendation 6: Further consideration should be given to removing the requirement for clients to complete the Part 1 application or to providing clients with a pre-completed Part 1 form based on the information currently held by Social Security Scotland.

I do not accept this recommendation at this time.

Reasoning

Clients in receipt of Child Disability Payment are currently required to make a full application to Adult Disability Payment after their 16th birthday. This is because the differences between Adult Disability Payment and Child Disability Payment eligibility criteria mean different and additional information is needed to make a decision on entitlement. I consider the approach taken ensures a more consistent and less complex process, intended to minimise the burden for all clients and to minimise the risk of clients experiencing a gap in payment, or receiving the wrong award.

As I set out above, the information required by Part 1 of the Adult Disability Payment application form is minimal. However it is likely that in many cases this information may have changed between when someone starts receiving Child Disability Payment (or their last review) and when they apply for Adult Disability Payment. The current approach ensures a balance between making the process as straightforward as possible for clients and enabling clients to tell us if something has changed. However, we have committed to a process of continuous improvement and I am therefore open to any changes that make this process easier for clients. I therefore remain willing to accept this recommendation in the future, once our current processes have had time to embed and we have gathered feedback from clients and case managers.

It should also be noted that significant development has been undertaken so that the application for Adult Disability Payment enables clients to provide detailed and relevant information required for a determination to be made. This includes clear guidance, examples of how the questions are relevant to clients with a range of disabilities, and avoids repetition wherever possible. Extensive analysis and user testing has taken place to ensure the questions, guidance and examples are structured and worded in the most helpful way to clients.

Recommendation 7: Further consideration should be given to providing clients, automatically or on request, with copies or a summary of all supporting information held by Social Security Scotland in relation to the Child Disability Payment award to support them in the process to transition to Adult Disability Payment.

I am considering this recommendation further.

Reasoning

I note that DACBEAG have made a similar recommendation previously, in their advice on consultations and decision-making for Disability Assistance, dated 14 April 2020. I therefore refer to the response of the previous Cabinet Secretary for Social Security and Older People on 24 March 2021.

Whenever a determination is made, Social Security Scotland send the client a decision letter which always includes a summary of any other supporting information that Social Security Scotland have gathered from or on behalf of the client and, in line with Section 40 of the 2018 Act, sets out the reasons for the determination. This includes any facts that have been material to the decision. The recommendation that the client receive copies of all information gathered may therefore be an unnecessary duplication of effort which would have cost and resourcing implications. Should a client wish to have a copy of the information gathered they can of course submit a Subject Access Request to receive this.

However, in light of our commitment to continuous improvement, we will continue to gather feedback from clients and case managers to understand where the process can be made easier for those going through it, and to make improvements where possible. I therefore wish to keep this recommendation under further consideration.

Recommendation 8: Mixed methods research including qualitative and quantitative research should be undertaken to monitor people's experiences and realisation of their rights to ensure the transition process in practice delivers a rights-based and person-centred approach.

I accept this recommendation.

Reasoning

The Scottish Government’s thematic approach to the evaluation of disability benefits will look across significant policy changes and the way disability benefits are being delivered to ensure maximise learning. These changes include the commitment to a rights-based and person-centred approach.

At the core of the evaluation programme, is a focus on integrating data from a range of sources which includes both quantitative data (for example, official statistics and analysis of management information) and qualitative research with those with experience of applying for Adult Disability Payment. The extension of Child Disability Payment from 16 years to 18 years old for those already in receipt of assistance before turning 16 will also form one of our core evaluation projects. Across this research, we will explore people's experiences of the transition process with regards to policy changes.

Adequate support, resources and information

Recommendation 9: The transition process should be clearly and pro-actively explained to all individuals.

I accept this recommendation.

Reasoning

Social Security Scotland send invitation letters directly to clients well in advance of their 18th birthday. This will provide clients with the information about whether and when to apply for Adult Disability Payment between the ages of 16 and 18, and allow them to make a choice which suits their preferences.

Information about the process will also be publicly available on mygov.scot. Significant engagement activity has taken place with stakeholder organisations who provide advice to clients, to ensure that organisations can support individuals where required.

Recommendation 10: Communications, forms and notifications relating to the transition process should be accessible and specifically tested with users to consider whether they address concerns about the current system for moving from Disability Living Allowance for Children onto Personal Independence Payment.

I accept this recommendation.

Reasoning

All Social Security Scotland communications, forms and notifications have been designed to be accessible, based on user research, and developed with significant input from stakeholders. Communications and notifications relating to the process of moving between Child Disability Payment and Adult Disability Payment have been developed and tested with users to ensure that they meet the information needs of the relevant client group. The content of these communications have been adapted based on the insights from these research sessions.

Additionally, the entire end-to-end process of moving from Child Disability Payment to Adult Disability Payment has been prototyped and tested with clients in order to understand their expectations and experience. This has led to numerous changes to the timing and nature of the communications activity, as well as the recent planned improvements to maintain payment cycles when clients move from Child Disability Payment to Adult Disability Payment.

Recommendation 11: Independent advice and advocacy services should be signposted to clients.

I accept this recommendation.

Reasoning

As mentioned in my response to recommendation 4, the guidance on mygov.scot and the letters inviting clients to apply for Adult Disability Payment all include links to independent advice organisations and contact information for the independent advocacy service.

Recommendation 12: Research to monitor people's experiences of the transition process should include a focus on the effectiveness of communication and signposting to support as part of the evaluation of disability benefits.

I accept this recommendation.

Reasoning

The Scottish Government is committed to continuous improvement and recognises the importance of effectively capturing learning. We are gathering client feedback via user research, surveys and stakeholder engagement in order to identify ways to enhance the client experience, including of moving between Child Disability Payment and Adult Disability Payment. Continuous improvement is imbedded in the overall delivery for Social Security Scotland.

Across the thematic projects within the evaluation of disability benefits which will gather experiences of how the benefits have been delivered, it will be possible to explore the effectiveness of communication and signposting. These aspects are also important to the delivery and evaluation of all benefits delivered by Social Security Scotland and will therefore be part of a wider evaluation work. 

Risks of the approaches outlined

Recommendation 13: Research to monitor people's experiences of the transition process should specifically assess the number of individuals that do not apply to Adult Disability Payment, but would likely have been entitled, and the main barriers that prevented them making an application as part of the evaluation of disability benefits.

I accept this recommendation.

Reasoning

I am grateful for you setting out the considerations informing this recommendation. I note that many of these considerations, including the need for clear communication, are not unique to clients moving from Child Disability Payment to Adult Disability Payment. Social Security Scotland have processes in place to communicate all clients’ rights and options to them, and to provide them with relevant information. I can also provide an assurance that, where a determination without application takes place, a client receives a notice of determination which communicates their re-determination and appeal rights.

The Scottish Government is committed to gathering feedback from clients and to identifying barriers to take-up where they exist. The focus of our evaluation programme is on assessing the effectiveness of policy changes and their relevant impacts in relation to the delivery of devolved disability benefits. Given the focus on a safe and secure transition and the considerable improvements to the application and decision-making process, we need to capture and understand what has worked well and areas that could be improved.

One of our core evaluation projects will be the extension of Child Disability Payment from 16 years to 18 years old for those already in receipt of assistance before turning 16. This project may provide scope for us to explore potential avenues to gaining an insight into the main barriers that prevented those receiving Child Disability Payment from applying to Adult Disability Payment, through our qualitative research. Where possible, we will explore the possibility of quantitatively assessing how many of those who were on Child Disability Payment did not transition to Adult Disability Payment through our available data sources (for example official statistics and analysis of management information). Wider work to understand the take-up of benefits more generally may also help provide insight into these issues.

The Scottish Government is also in regular contact with Health Boards and Local Authorities in order to collect information on the process for gathering supporting information and how information, feedback and learning is shared.

Recommendation 14: All appropriate attempts should be made to ensure the disabled person is made aware of their rights, and that they have the option to apply in their own right, not solely through a parent or carer and be responsible for their own money as part of the transition process.

I accept this recommendation.

Reasoning

Clients are informed of their rights throughout the process of moving from Child Disability Payment to Adult Disability Payment. Social Security Scotland writes to clients in advance of their 16th birthday, and in advance of their 18th birthday, to inform them of their options, their rights, and support and advice available to them.

Clients who are over 16 are usually responsible for managing their own benefits. Therefore, many clients in receipt of Child Disability Payment will apply for Adult Disability Payment in their own right except in cases where they are legally regarded as lacking the capacity to manage their own payments and have a formal appointee in place. This is the case regardless of whether the individual wants to apply from the age of 16 or stay on Child Disability Payment until turning 18. This will be set out in general guidance about moving from Child Disability Payment to Adult Disability Payment on mygov.scot.

Recommendation 15: The planned review of Adult Disability Payment should consider a move towards a supported application approach. 

I partially accept this recommendation.

Reasoning

The planned review of Adult Disability Payment will be carried out by a group that is fully independent of the Scottish Government. The group will be informed by people with lived experience of applying for and receiving Adult Disability Payment. Ministers are considering the more detailed remit of the review, which will be confirmed next year and will include this recommendation in those considerations. While I therefore would not want to pre-empt this ongoing work or any recommendations of the group, I fully appreciate the importance of establishing and building a system that can respond to feedback and the experiences of those who use it. The Government’s commitment to collecting feedback and continuous improvement means that we will always look to improve the process where appropriate.

Conclusion

I trust you find these responses helpful. My officials would be happy to further engage with DACBEAG on any of the issues discussed. Once again, I would like to take this opportunity to thank you for your continued support as we work to further develop a social security system that delivers with dignity, fairness and respect.

Best regards,