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

To: Ben Macpherson – Minister for Social Security and Local Government

By e-mail

26 October 2022

Dear Mr Macpherson,

Transition from Child Disability Payment to Adult Disability Payment

We were grateful for the request made by your officials to provide advice on the transition from Child Disability Payment to Adult Disability Payment.

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 met with officials on 11 May 2021 to discuss this issue. We would like to thank the officials who worked with us in this area. Their input was clear, concise, and greatly aided us in focusing this advice. Unfortunately, due to reduced Secretariat capacity, the Group was unable to provide this advice in the timescales outlined by officials. Given that we were not able to provide the advice ahead of the finalisation of the Disability Assistance for Working Age People (Scotland) Regulations 2022, the decision was taken to de-prioritise this advice. However, as the Group move towards the end of their term, we feel it is still of value for our recommendations to be considered as detailed processes become finalised to support individuals moving from Child to Adult Disability payment and for any future review.

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 May 2021 Scottish Government officials leading on Adult Disability Payment presented to DACBEAG. They explained that existing Child Disability Payment clients are entitled to transition to Adult Disability Payment on or after the day on which they reach the age of 16 and also have the right to remain in receipt of Child Disability Payment until they reach the age of 18. Now Adult Disability Payment is in delivery, it is intended that clients will be able to remain on Child Disability Payment until the age of 19 to ensure they do not experience any gaps in entitlement when transitioning from one form of assistance to the other.

In briefing provided to us by officials, the Scottish Government’s policy principles underpinning the transition process were presented as:

• ensure it accords with the values of dignity, fairness and respect
• requires as little effort on behalf of the client as possible
• makes use of existing information about the client and how they are impacted by their disability or health condition
• causes the minimum possible disruption and anxiety to the client

Officials set out three options for the transition process:

• option 1: Mixed approach: Where a young person wishes to transition to Adult Disability Payment, a case manager considers whether there is sufficient information relating to the Child Disability Payment to make a determination of entitlement to Adult Disability Payment. Either a determination without application is made at this point or the established procedure to gather further information is followed. If the case manager is unable to gather sufficient information to positively determine entitlement to Adult Disability Payment, the client is invited to make an application for Adult Disability Payment
• option 2: Determination without application for all: As above but for those where sufficient information cannot be found to positively determine entitlement, a negative determination without application will be provided. The client would then have the option to request a re-determination and then appeal
• option 3: New application for all: When clients wish to transition to Adult Disability Payment, they would make an application in the same way as clients not in receipt of Child Disability Payment. Measures would however be put in place to support clients with this process as much as possible

We were specifically asked to respond to the following:

• are there any options the Group would favour?
• are there significant risks of any of the approaches which the Group think officials have not considered?
• would the Group recommend any alternative approaches?

Since the above options were presented, the Scottish Government has opted to proceed with Option 3 and to require all individuals to make a new application for Adult Disability Payment. This would not have been the preferred option of Group members, who would have preferred either a mixed approach or a supported application approach to ensure the best use is made of existing information held by Social Security Scotland to support individuals through the transition process. We, therefore, provide our considerations and recommendations around our preferred option, on the basis that these can be used to help inform the development of detailed processes behind the chosen option and to help inform the analysis and review of the effectiveness of that option as well as the consideration of future improvements that will be needed.

Considerations

We would like to share some initial high-level comments on the transition process ahead of addressing the specific questions outlined above.

Continuation of the Child Disability Payment award

Parents of disabled children and young people found the process of moving between DLA for Children and Personal Independence Payment stressful because of the uncertainty and disruption it brought. The Group welcome the positive news that regardless of the option chosen, individuals will retain their entitlement to Child Disability Payment until a positive Adult Disability Payment determination is made. This is fundamental to removing a lot of the uncertainty of the current process.

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.

Transition principles and guidance to case managers

We believe that whichever process is chosen, the transition principles and the human rights and equalities considerations that informed the development of the principles should be clearly articulated. This should include specific consideration of relevant commentary from bodies such as the Committee on Economic Social and Cultural Rights and the UN Office of the High Commissioner’s recommendations in relation to the socioeconomic impact of Covid on disabled people. The principles should inform guidance for case managers on supporting clients through the transition process. The guidance should clearly set out the human rights and equalities obligations on case managers and complementary accessible information should be available for clients.

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.

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.

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

Rights based and person-centred approaches

The rights to a determination of entitlement are set out clearly in the Social Security (Scotland) Act and provision to support the transition in regulations must, of course, meet the requirements of the Act. Any process that involves case managers taking a lead in the transition through making a determination without application must ensure a client centred approach is still taken and that the client is fully informed and involved, with a right to challenge at every relevant stage.

Careful thought should be given to how information already provided can be used to support new applications. Information supplied to families claiming Disability Living Allowance for Children could also be used in the transition process to alleviate some of the stress currently associated with transitioning to Personal Independent Payment. We recognise that this is a separate benefit and so some of this will not be relevant.

However, there will likely be sufficient information to enable Part 1 of the Adult Disability Payment application to be pre-loaded or even to avoid it being required. This would enable families to focus on providing the detailed information required to assess entitlement against the specific eligibility rules in Part 2 of the application. Families should also be informed that they can request a copy of all supporting information held by Social Security Scotland in relation to their current Child Disability Payment award: this would be a supportive approach towards completing Part 2 of the application.

Most importantly, the Group felt that it is important to improve the system for the people who use it rather than for the people who administer it. Being fair to clients does not mean asking them all of the same questions. Principles in the 2018 Act should be followed accordingly to ensure all individuals have the best chance to be awarded the correct rate, and the process should be designed in such a way to promote this.

Whilst there is a certain amount of challenge to balance rights, equality, value for money and the appropriate use of resources, finance and resourcing should not be the determining factor in designing the transition process or in decision making, which should be people-centred and human rights-based.

The focus must be on taking both a rights-based and person-centred approach. This means taking the burden off the client wherever possible but also making sure they are fully informed and involved at every stage, as well as having appropriate rights to challenge. The Group notes that these points are already reflected within the framework of the 2018 Act and in the proposed transition principles. They should be carried through into the detailed design of the process. Mixed methods research including qualitative and quantitative research will be essential to monitor people's experiences and realisation of their rights to ensure this is achieved.

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.

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.

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. 

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.

Adequate support, resources and information

Through our experiences of what has worked well in the past with disabled people applying for self-directed support, we believe that many people need clear communication and sufficient support such as independent advice, peer support and advocacy to successfully go through the process.

Sufficient resources will be required and should be put in place to support individuals and their families ahead of and throughout the transition period to alleviate some of the anxiety associated with it and enable them to apply for the benefit. This should include proactive communication from Social Security Scotland to let clients know what the process will look like and what additional information is likely to be required in order to show entitlement to Adult Disability Payment. This will enable individuals and families to prepare appropriately.

Clear communications will be key to enabling people to navigate the process effectively and this should include accessible forms. Those with protected characteristics under the Equality Act should be referenced as they are most at risk of not accessing their rights. The communications used for this should be thoroughly user tested to draw conclusions on whether individuals felt this newly proposed process eased some of the anxieties and uncertainties that exist with the current system.

If the process is explained clearly in advance and in sufficient detail, this should reduce the instances where clients leave it until the last minute to engage and/or make any necessary application – or indeed feel unable to do so. Whilst we acknowledge that there are a lot of changes in a young person’s life during the period that they can apply for a transition, it is important for them to be reminded that the transition can only go ahead while they are still eligible for Child Disability Payment.

It is also important that disabled individuals and those representing them are able to access independent advice and independent advocacy.

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

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.

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

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.

Are there significant risks of any of the approaches which you think we have not considered?

The Group welcomed the detail that officials provided on the three options set out in the paper and the subsequent discussions. The Group note the following considerations were relevant to those options:

• the Group feel that families must understand how their young person fits with the criteria for the new benefit. Otherwise, they will not know to seek a different payment rate in the future should they become entitled to it
• making everyone go through the same process is unlikely to reflect the different needs of different individuals. Not all young people going through the transition period will have the same experience for a number of reasons, including but not limited to their varying protected characteristics or how they define their disability. It is important that there are considerations around equality and intersectionality to ensure the groups who are most at risk of not having their rights fully realised are recognised and acknowledged appropriately
• if the option of an unsupported application process is chosen, some individuals that get an application sent to them will not complete it, as they will find it too difficult or daunting
• if a determination without application process is used, it may be more difficult to clearly communicate to clients their rights, including re-determination and appeal rights. The specific rights of the disabled young person also need to be considered where the Child Disability Payment award is managed on their behalf by a third party

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.

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.

Would the Group recommend any alternative approaches?

Given the Group’s consideration of all the issues identified above, we would recommend that the planned review of Adult Disability Payment consider a move towards a supported application approach in future, based on evidence from early practice. The Group’s view is that a process should be designed to enable an approach tailored to individual’s needs. In every case a supported application process should be used. A case manager should review the information held in relation the individual’s Child Disability Payment award and group individuals into three categories:

Group A: where the information already held is sufficient to make a determination of entitlement to Adult Disability Payment, this information should be used to pre-populate both the Part 1 and Part 2 Adult Disability Payment application form. This should then be sent to clients to review and make any relevant changes before signing and returning the form and a determination can then be made accordingly once the completed form is returned.

Group B: where only some further information is required that the case manager can obtain through the usual information gathering processes, then the client should be asked to confirm that they wish to apply for Adult Disability Payment, informed that further supporting information would be required, and asked to confirm if they are content for the case manager to collect this further information on their behalf. Once the further information is gathered, an Adult Disability Payment Part 1 and Part 2 application form would be pre-populated and sent to the individual for review and signature.

Group C: where there is insufficient evidence held to determine entitlement to Adult Disability Payment and the case manager does not feel they have been able to gather sufficient additional supporting information. In these cases, an Adult Disability Payment Part 1 and Part 2 application form should be pre-populated with the partial information available with a clear explanation given to the individual about the further information they would need to provide. This should be clearly set out in an additional information form with a clear explanation about what criteria it relates to. It would then be up to the client to complete the application form, additional supporting information form, sign and return. If the information provided is then sufficient, a positive determination can be made. If not, a negative determination can be made from which the individual will be able to request a re-determination and appeal.

We believe that this would alleviate a lot of stress and uncertainty, make the most of the information already held by Social Security Scotland, and fully respect clients’ rights.

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

Conclusion

We appreciate that the Scottish Government undertook detailed consideration of a number of options for the transition from Child to Adult Disability Payment and that unfortunately we were unable to provide our advice in time to inform high-level decisions on this occasion. We hope the advice and recommendations above will be helpful in informing detailed process development and delivery, as well as analysis of their effectiveness and future options for improvement.

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