Disability benefits evaluation: Special Rules for Terminal Illness in the context of the devolved disability benefits

Introduction

Policy Background

If a person lives in Scotland and has been diagnosed with a terminal illness, they may be eligible to apply for disability benefits under Special Rules for Terminal Illness (SRTI).

The Scottish definition of terminal illness is different to that used by the UK Government. The Scottish definition of terminal illness, for the purposes of accessing disability assistance, is set out in the Social Security (Scotland) Act 2018, (as amended by the Social Security Administration and Tribunal Membership Act 2020): “An individual is to be regarded as having a terminal illness for the purpose of determining entitlement to disability assistance if, having had regard to the (Chief Medical Officer’s (CMO)) guidance, it is the clinical judgement of an appropriate healthcare professional that the individual has a progressive disease that can reasonably be expected to cause the individual’s death.” This definition removes the timescale currently used by the Department for Work and Pensions (DWP) (likely to die within 12 months). Instead, the judgement as to whether a person should be considered terminally ill for the purposes of determining eligibility for Disability Assistance, is made by clinicians (doctor or nurse involved in individual’s diagnosis or care), based on guidance prepared by the Chief Medical Officer (CMO). It is a legal requirement that clinicians pay regard to the guidance when making their clinical judgement.

If an individual is currently living with or is diagnosed with a terminal illness under the Scottish definition, their application for disability assistance can be processed under special rules. Special rules apply to Child Disability Payment (CDP), Adult Disability Payment (ADP), Pension Age Disability Payment (PADP) and Scottish Adult Disability Living Allowance (Scottish Adult DLA). For individuals applying under special rules, this means that:

• There is no qualifying period (e.g. individuals are not required to have had the condition for any length of time before they are eligible)
• There is no requirement for an individual to undergo any further assessment to establish that a person has a terminal illness
• Awards will be calculated, at the latest, from the date of application
• Individuals who are terminally ill automatically receive the highest rates of disability assistance they are entitled to and there are no award reviews unless there is a change of circumstances
• Applications will be fast tracked

To support the introduction of SRTI, the National Implementation Group for Terminal Illness (NIG) was established, comprising clinicians and wider stakeholders. This group was formed following the work of the Terminal Illness Stakeholder Reference Group and the Short-Life Working Group on Terminal Illness.

The NIG provides support for the refinement and application of the CMO Guidance and evaluation of its implementation. This ensures the guidance is applied appropriately, and allows members to identify and address any issues which emerge as the policy is established.

A raft of support measures for clinicians, developed with the NIG, have been designed to ensure the smooth implementation of the new terminal illness rules. This includes carefully crafted communications, a one-stop online ‘hub’ for all related information, frequently asked questions, easy-read information leaflets tailored for both clients and medical professionals and a clinical helpline managed by Social Security Scotland.

Policy Principles

• No requirement for 12-month life expectancy – clinician judgement in line with CMO Guidance
• Simpler application form with completed Benefits Assessment under Special Rules in Scotland BASRiS (or equivalent).
• Fast-tracked applications with aim of making decision within seven working days
• No reviews unless a change in circumstances
• Awards can be backdated to terminal illness diagnosis date, up to a maximum of 26 weeks before application date
• Client is automatically awarded highest rate/s they are entitled to
• Weekly in advance payment
• No need for client to contact clinician for BASRiS – clinicians can submit this directly to social Security Scotland or clients can ask Social Security Scotland to contact their clinician
• Award transferred from DWP via an expedited process where this is beneficial to the client. Client receives highest rate/s they are entitled to upon completion of case transfer
• Implementation of the Scottish terminal illness definition and associated CMO guidance

Evaluation Aims

The Scottish Government published its approach to evaluating the devolution of disability benefits in October 2021. Taking a thematic approach across the key areas of policy change, the overarching aim of the evaluation programme is to understand how the disability benefits have been implemented and what effects this has had, for whom and why.

The initial priority for the devolution of disability benefits has been on ensuring that clients transition safely and securely from the DWP to Social Security Scotland and that they continue to get the right payments at the right time.

The overall aim of the evaluation was to explore how changes to SRTI have been experienced by clients and clinicians, and to assess whether it is meeting its policy commitments.

The specific aims of the evaluation are:

• To understand how the Scottish terminal illness definition and associated guidance have been understood and experienced by clinicians
• To understand how SRTI clients experience the process of applying for disability benefits
• To understand how SRTI clients experience the process of having their benefit transferred from the DWP to Social Security Scotland
• To understand the impact of the SRTI policy changes (change in definition, application process, highest rate of disability assistance i.e. both care and mobility enhanced, where relevant) on clients’ experiences and outcomes

Report Structure

This report is structured around the short-, medium- and long-term outcomes of the process described in the logic model. A description of the methodology underpinning the evaluation is provided in the next chapter. The report ends with an overview of the key findings alongside considerations for policy and practice.