While making a smooth transition the priority, the Scottish Government has nonetheless decided on some policy changes for CDP where the rules will diverge significantly from DLA. We consider these in turn below.

Currently, children and young people who are terminally ill are fast-tracked to a higher rate of benefit under ‘special rules’. The Scottish Government has sought to improve these special rules. As one stakeholder told the Commission, ‘it is hard to imagine anything worse than a parent facing the death of their child’. The Commission welcomes sensitive changes to rules that protect the dignity of children and families at such a time, in accordance with social security principle (d)28. In brief these changes are as follows:

• Under existing rules for DLA, a DWP decision maker decides whether a person has a progressive disease and is reasonably expected to die within six months. In Scotland, for CDP (and other disability assistance), this six month limit will be removed.
• For DLA and other UK benefits, evidence is supplied by a doctor on form DS1500. In Scotland, for disability assistance, this system will be replaced by one where a doctor or nurse uses Guidance for Doctors Completing Benefits Assessment Under Special Rules in Scotland (BASRiS) to decide whether someone is terminally ill.
• This clinical judgement is recorded on a BASRiS form and gives entitlement to the highest rate of both the care and mobility components of CDP without further assessment and with no review period. In contrast, for DLA, a child who is terminally ill is entitled to the highest rate of the care component but not to the mobility component.

The Scottish Government anticipates that the new definition of terminal illness means a wider range of illnesses and conditions will come within the scope of the special rules provisions.  The BASRiS guidance has been developed by the Chief Medical Officer in consultation with medical professionals and other stakeholders. We understand that although still
in draft, the clinical content is finalised but there may be changes to practical aspects, for example, about how BASRiS forms are sent and received. Both aspects are obviously critically important for a system that is primarily intended to get support to people quickly and easily.

An obvious pressure point is the fact that, in Scotland, there will be two systems operating for determining whether someone has a terminal illness. This has implications for DWP and Social Security Scotland, as well as for doctors, terminally ill children and their families.

For example, a young person diagnosed with a terminal illness could be claiming universal credit (and needing to get a DS1500 form from a doctor to send to the DWP) and claiming CDP (and needing to get a BASRiS form to send to Social Security Scotland). This process complexity could impact access to the support children and young people are entitled to. It relies on a high degree of understanding of the system from the young person, their parents or carers and the doctor. People are often uncertain of exactly which benefit they are claiming or getting, and doctors are not experts in social security.

Where terminally ill children move from Scotland to live in another part of the UK, the divergence in definitions and systems means that in the move from CDP to DLA they will need to be assessed to keep the mobility component and will need to ask a doctor to supply a DS1500 to keep the highest rate of the care component without a further assessment.

There are ways to mitigate this. Officials have explained to the Commission that Social Security Scotland will accept a DS1500 form where one exists and will not require a BASRiS form as well. This is welcome as it will help make the process easier for children, young people, their parents and carers. However, ideally the regulations would be clearer that this is acceptable. As drafted, a DS1500 form would only be acceptable evidence if the doctor (or nurse once the necessary amendments are made to the Act) signing the form had taken account of the BASRiS guidance. However, we accept that this may not be a barrier in practice.

Recommendation 4: The Scottish Government should take the necessary action to ensure that its own administrative systems protect terminally ill children, young people and their carers from experiencing the complexity arising from diverging systems in Scotland and the rest of the UK, and work with the DWP to create a seamless interface.

Some terminally ill children and young people will be eligible for higher amounts of CDP than their counterparts in the rest of the UK. The same will be true for terminally ill children and young people already getting DLA when CDP is introduced. We commend the Scottish Government’s intention to prioritise transferring people who would be better off on CDP.

The decision-making process for whether or not a child or young person is considered terminally ill clearly needs to be robust. If a doctor takes the view that a child or young person is not terminally ill within the parameters of the BASRiS guidance, there is no right of redetermination about that judgement through Social Security Scotland, or any onwards appeal. Social Security Scotland case managers have no role in deciding whether a child is regarded as ‘terminally ill’ in law. Instead, BASRiS guidance advises doctors that the individual may ask for a second opinion, and that ‘the usual processes’ should be applied.

Recommendation 5: To ensure the system is robust, the Scottish Government should make sure that processes for getting a second opinion from another doctor about whether a child or young person meets the definition of ‘terminal illness’ for entitlement under the special rules are clearly explained and accessible in accordance with the expectations in the Charter.

The special rules on terminal illness are intended to simplify the application process, to remove qualifying periods and to fast track applications. Monitoring the performance of the new BASRiS system should take into account the greater need for a quick response to any problems identified with the system.

Recommendation 6: Monitoring and evaluation of how the system supports terminally ill people should be joined up across Social Security Scotland, the NHS and the DWP, and take account of the need for quick, effective action to address any problems.

We note some technical issues with the regulations on terminal illness.

• There is no equivalent for the mobility component to regulation 5(7) which exempts someone who is terminally ill from having to satisfy the standard three-month qualifying period for the care component. We assume that this is a drafting issue which will berectified before the draft regulations are laid.
• Regulation 5(7) uses the term ‘claim’ and ‘date of claim’ which are not terms used elsewhere in Scottish social security or defined in the regulations. The regulation should be drafted using defined terms.
• Regulation 4(7) lifts the usual requirement in regulation 4(1)(d) to have been present in the UK for a specified length of time before someone can be eligible for CDP. This allows a terminally ill baby to get CDP from birth, or a terminally ill child who comes to live in the UK from another country to get CDP without waiting for the usual two years. However, in a departure from DLA rules, it also lifts the requirement to be present in the UK at all. This would allow a child to leave the UK indefinitely as long as they remained ordinarily resident in Scotland. This may well be an intended consequence but if so it should be made very clear at least in case manager guidance.
• How the special rules are intended to operate when children reach age 16 is not clear. For example, would a child stay on CDP indefinitely rather than be required to apply for Disability Assistance for Working Age People? Robust decision making will need clear processes, rules and guidance.

Recommendation 7: The Scottish Government should attend to the technical issues noted in relation to terminal illness regulations:

• to include a mobility component qualifying period exemption for terminal illness;
• to replace in regulations the term ‘claim’ with the term ‘application’;
• to clarify in regulations or guidance whether it is intended that there is no requirement for a terminally ill child to be present in the UK for entitlement to CDP;
• to clarify in regulations or guidance how the special rules operate when children reach age 16.

As children reach age 16, Social Security Scotland will automatically extend a CDP award to their 18th birthday. The welcome intention is to ensure that young people do not have to apply for a new benefit at a time when they are dealing with other transitions in their lives. It will also have the benign effect of prolonging entitlement for those young people who will not be eligible under the different rules for Disability Assistance for Working Age People (DAWAP). However, stakeholders have also raised a number of issues:

• It is important that young people have a choice. Some will be better off claiming DAWAP (which will be the replacement in Scotland for Personal Independence Payment). Regulations do not seem to provide a clear mechanism for this to happen.
• A child aged 16 to 18 who lives at home and takes regular short breaks in a care home may lose entitlement to CDP simply due to spending days in a care home. If the policy intention is that entitlement should resume when the young person returns home (as it would for a child under 16), this would seem to be prevented by regulation 22(4) which only allows CDP where entitlement begins before age 16. It is not desirable for a short break to trigger a need to apply for DAWAP particularly as there is no mechanism to continue CDP until DAWAP is in place.
• It is more than likely that some people aged 16 to 19 in particular, but possibly of any age, will be confused about which benefit is the right one to apply for. Their date of application could be protected by including in regulations a provision to treat an application for DAWAP as an application for CDP or vice versa.

Recommendation 8: Regulations should be framed in such a way as to:

• provide young people a choice of which benefit to claim from age 16;
• prevent a short break in a care home or a stay in a residential school from triggering a need to apply for DAWAP;
• protect people from the consequences of applying for the wrong type of assistance, for example, by treating an application for DAWAP as one for CDP and vice versa.

In scrutinising these draft regulations without also seeing the age rules for DAWAP and regulations to manage the transition between CDP and DAWAP, the Commission is aware of only seeing part of the picture at this point.

Observation 1: Given that young people aged 16 to 19 could potentially be on either CDP or DAWAP or transitioning between the two, there may well be a need to adjust CDP regulations in light of DAWAP regulations to ensure they are properly aligned.

Short-term Assistance (STA) is a new payment, and not part of the current system. Those receiving CDP will be able to apply for it when they request a redetermination or appeal after regular payments of disability assistance have been stopped or reduced. STA will replace the amount lost until the challenge is complete.

Although STA is a form of social security assistance in its own right, there are no standalone regulations. STA is included in the draft Disability Assistance for Children and Young People Regulations. These provide for STA to be paid on application during a redetermination, and again while an appeal is underway. By continuing to pay people the amount they previously received, the intention is people will feel more able to challenge decisions than is the currently the case with UK benefits.  Those who then go on to lose their redetermination or appeal will not be required to repay STA.

This new financial support is likely to help families cope with a sudden drop in household income at the point that a CDP award is removed or reduced. As such, it would seem reasonable to conclude that STA is in the best interests of the child. As an active incentive to challenge a decision, this is likely to be regarded as enhancing the rights of children
to be heard in administrative proceedings.

However, while the intention is to encourage people to challenge decisions they think are wrong, STA presents a clear incentive to challenge decisions solely in order to access these payments. Seeking a ‘second opinion’ is perfectly legitimate and incentivising people to do so is a reasonable aim given the well-publicised barriers that exist to challenging decisions.  For CDP, this is not likely to lead to many ‘extra appeals’. The Scottish Fiscal Commission has forecast the additional cost of STA for CDP as less than £2m given that when a child’s DLA award is reviewed, the award is generally continued, so the number of CDP challenges and thus STA claims is likely to be low.  The picture could be different for Disability Assistance for Working Age People. Overall, the Scottish Government expects there to be fewer appeals. However the potential impact of STA driving more appeals may not have been fully considered.  Clearly, under social security principle 1(h), the Scottish Government has a duty to ensure that the system is efficient and delivers value for money. If there are many more appeals than expected, this could have adverse effects for the system and public confidence.

There is an opportunity to learn from experience in Northern Ireland where there a model similar to STA in some respects is already in operation. People appealing as they move from DLA to PIP in Northern Ireland receive a ‘welfare supplementary payment’ equivalent to the amount of lost benefit, until the end of the appeal process.  Experience of this system may offer insights into behavioural impacts, administration and cost. We note that appeals also provide a valuable opportunity to learn how initial decision-making can be improved.

Recommendation 9: The Scottish Government should:

• assess the likely behavioural impacts of Short-term Assistance and knock-on effects (including on timeliness and standards of decision making), and ensure that Social Security Scotland and the Scottish Courts and Tribunals Service are prepared with the capacity to handle the estimated number of redeterminations and appeals;
• monitor the extent to which the appeals system, with the availability of Short-term Assistance, enables people to overcome barriers to challenging decisions, or results in unintended consequences
• build in learning from the Tribunals Service, for example, about reasons for overturning decisions which can point to ways to improve decision making at an earlier stage.

There are a number of technical issues with the draft regulations on STA:

• The period of entitlement is not tied to the date of application as is usually the case with benefit entitlements. As an extreme example, this would seem to allow someone to lose an appeal and then apply for STA, and for this to be paid back from the date they first asked for a redetermination, which could be many months. This consequence may already have been considered, and in any case the possibility of late applications can be minimised through processes that actively offer people STA at each stage.
• Where someone has been overpaid social security assistance, they can repay it by deductions from an ongoing award. These deductions will be carried forward into an STA award. As drafted, it is not clear whether someone who continues to have a deduction made from an ongoing reduced CDP award, must also have the same deduction made from STA, which could then mean a double deduction.
• Drafting of regulation 18(2) is ungrammatical (the opening words in relation to the subsequent paragraphs) and probably incomplete (paragraph (c)).
• Where fraud is involved, the intention is that no STA payment is possible. The regulations as drafted do not clearly set this out. Nor do they make it clear what would happen if fraud is not identified at the start of the process but only when STA is already in payment.  The Scottish Government has said that it would only ever ask people to pay back STA if it is later established that they were claiming disability assistance fraudulently39 but, if this is still the intention, there appears to be no clear mechanism to recover overpaid STA.
• The intention is that STA is not available to people who move from Scotland to another part of the UK and are receiving a 13-week run on. It is not clear that the regulations as drafted achieve this intent.

Recommendation 10: the Scottish Government should attend to the technical issues noted in relation to Short-term Assistance:

• to consider whether regulations should allow STA to be paid in full when an application is late;
• to clarify in regulations what deductions for an overpayment would be made from STA when someone has continued
  entitlement to CDP;
• to redraft regulation 18(2) to achieve the policy intention;
• to clarify the regulations with regard to fraud, and to moving from Scotland to another part of the UK.

The Scottish Government will replace the existing UK Winter Fuel Payment by the end of 2021 with Winter Heating Assistance (WHA). WHA will be an annual payment of £200 for people over pension age. The Scottish Government is using its new powers to extend eligibility to disabled children who are in receipt of the highest rate of the care component of CDP or DLA. These draft regulations provide for this extended Child WHA. Further regulations will follow for WHA for pensioners.

Child WHA is intended to improve the health and wellbeing of severely disabled children and contribute to a reduction in fuel poverty. It is forecast to benefit around 16,000 families in the first year, at a cost of £3.5m. The right of disabled children to the highest attainable standard of health may involve households spending extra on heating, and the right to enjoy an adequate standard of living involves providing support with those costs. Child WHA is a step towards meeting these rights. Obviously WHA and CDP are connected and both have a contribution to make to advancing the rights of children. How and if WHA enhances rather than duplicates CDP support should be a focus for longer term policy developments.

The Commission notes that, in time, the Scottish Government aims to improve the way WHA is delivered, including to rural households who are not on the gas grid and may have higher upfront costs. It would seem sensible to consider the feasibility of paying WHA early to off-grid households alongside a review of whether the week beginning on the third Monday in September is the best qualifying week for WHA. This is the same qualifying week as for the Winter Fuel Payment, which is being replaced. The rationale for choosing this qualifying week was to give the DWP time to carry out the necessary checks and make payments before Christmas. Social Security Scotland may need more or less time, depending on such things as staffing capacity, IT and data sharing. As both CDP and DLA are qualifying benefits, this requires DLA data to be shared between the DWP and Social Security Scotland. Officials tell us that they are working with the DWP to ensure appropriate data sharing arrangements are in place in time.

There are a number of technical issues with the regulations on WHA:

• Children in receipt of DLA at the relevant rate will be eligible for WHA. Regulation 17 applies no residence or presence test to WHA, presumably relying on the test having been applied to CDP as the qualifying benefit. However, as drafted, children who live outside Scotland who are in receipt of DLA are not excluded from entitlement to WHA.
• Children who get the relevant rate of CDP only after a redetermination or appeal do not miss out on WHA by virtue of regulation 17(1)(b). However, there is no similar provision to protect children who only get the relevant rate of DLA following a revision, supersession or appeal. It would seem fair to have the same rule apply to all.
• Where a CDP award is made to correct an official error (under regulation 32), there will be no entitlement to WHA even where the CDP payment is backdated to the WHA qualifying week. The rationale for treating an award to correct an official error less favourably is not clear.
• Regulation 17(2) provides for £200 to be paid to the individual who is in receipt of CDP or DLA. For clarity, there could be separate provisions for the amount payable in respect of the child, and to whom it is paid. If this is not clearly set out, there could be confusion over whether there is one £200 payment per child, or one £200 payment per household where a parent is paid CDP for more than one child.

Recommendation 11: The Scottish Government should attend to the technical issues noted in relation to Child Winter Heating Allowance:

• To amend the draft regulations to clarify that children who get DLA and live outside Scotland cannot access Winter Heating Assistance;
• To consider adding a provision allowing access to Winter Heating Assistance when DLA is awarded following a revision, supersession or appeal;
• To consider adding a provision to allow access to Winter Heating Assistance when CDP is awarded to correct an official error;
• To clarify in regulations whether there is one £200 payment per child or per household.