An ADRC-NI project linking Social Security Benefits and Census data to understand the health and social needs of disability benefits claimants

Northern Ireland (NI) is one of the most disadvantaged parts of the UK, with high levels of disability and joblessness, but it is the most dependent on state benefits. In 2014 one-in-ten of the working-age population was receiving Disability Living Allowance (DLA), compared to one-in-twenty for Great Britain. The higher uptake rate of DLA in NI remains unexplained though poorer mental health (possibly as a result of civil unrest) may be partly responsible.

Despite the high number of claimants there is a surprising paucity of information about the health of DLA claimants and how this relates to disability in the wider community. There is a growing recognition that multiple disability (or multimorbidity) and poor mental health are increasingly important. Employment levels amongst DLA recipients are thought to be extremely low and much lower than other people with apparently similar levels of disability, but as these data are not routinely gathered there is little information about how this varies by rate of claimants or type and severity of disability. It is also evident that many people do not claim the benefits to which they are entitled and the success of advertising campaigns and offers of free benefits checks to possible beneficiaries has been limited. It is apparent that the evidence base for targeting potential claimants needs to be improved.

The objective of the proposed research is to generate health and social-related information on both disability claimants and non-disability claimants to achieve a better understanding of the impact of the planned introduction of Personal Independence Payment (PIP). Our research partners, the Department for Social Development (DSD, which is responsible for Social Security Benefits in NI), have indicated that increased knowledge from the research will be instrumental in shaping future disability policy (regardless of the uncertain nature of the detail of the specific PIP changes in NI and the implementation timescale) and will be vital in identifying the type of support services required and therefore enable resources to be targeted appropriately.
The overarching aim of the proposed research is to undertake a unique pathfinder study linking census and DLA records in order to answer three overlapping research questions, specifically, to (i) compare the types and severity of chronic conditions and the role of multimorbidity amongst DLA recipients and non-recipients; (ii) determine which conditions and combinations of conditions are associated with employment amongst DLA recipients, and (iii) identify and estimate the individual, household and area-level factors impacting DLA uptake in NI.

The extensive disability and condition-specific health questions in the NI 2011 Census will be used as a close proxy for DLA need and comparison against the benefits claimant dataset will be used to identify the individual, household, social and area-level factors differentiating claimants and non-claimants. There will be a specific interest in the potential for unmet need amongst ethnic minorities and migrants and whether unemployment or wealth moderates the relationship between need and claims. The research will be a partnership between the two universities in NI and the DSD; it will be supported by the ADRC-NI, which will facilitate data linkage and the production of a de-identified dataset for research in a safe-setting. DSD will provide guidance on the structure and interpretation of the benefits database and will facilitate knowledge transfer and incorporation of the research findings into policy. If successful, this study would be the first in the UK to link social security data to other routine administrative datasets and this precedent would open up access to these datasets for other researchers throughout the UK. The project will also provide a significant training opportunity for ADRC-NI support staff and the associated researchers, including the named early career researcher.

The proposed study will provide a greater understanding of the health and social characteristics and needs of both people in receipt of Disability Living Allowance (DLA) and potentially eligible non-claimants. This will have an immediate impact on front-line organisations providing services, support and advice to individuals with disabilities.

The Department for Social Development (DSD) has strategic responsibility for social security benefits as part of the Northern Ireland Executive and is the primary non-academic partner for this project. The DSD will sit on our Project Steering Group and will be consulted with regard to the analysis plan, pertinent questions and dissemination of results. Encouraging benefit uptake is a key priority for the DSD and is a core building block in the 2011-2015 Programme for Government. The 2013/14 "Make the Call" Improving Benefit Uptake Programme is currently underway with a vision to ensure that every individual across Northern Ireland (NI) is receiving all social security benefits to which they are entitled. However, to date, only around 16% of those estimated to be eligible for unclaimed benefits have come forward during the campaign. There is a clear need to understand why a large proportion of eligible individuals are reticent about claiming benefits to which they are entitled. This study will provide a detailed health and social profile of those individuals potentially eligible for benefits and not claiming to assist the DSD in producing new, efficient, targeted intervention policies, highlighting unmet need in particular amongst individuals identified under Section 75 of the Northern Ireland Act (1998). In addition, as Personal Independence Payment benefits (PIP) will imminently replace the DLA, this research will establish a baseline of key health determinants of disability benefit and provide useful, strategic, policy related information which can be used by the DSD to better understand the role that health plays in the variation of benefits uptake.

The results of this study will also have a direct impact on organisations who deal on a daily basis with potentially eligible non-claimants. The project team is well networked with the Northern Ireland Advice Service Consortium (NIASC), who provide regional support to frontline generalist advice providers such as Advice NI, Citizens Advice and the Law Centre NI, and will act as facilitators for direct access to these groups. Profiling potential recipients will give these organisations the tools to identify, highlight and target populations who are not receiving the benefits to which they may be entitled. A representative of the NIASC will sit on the Project Steering Group.

To complement the project's dissemination it will be branded under the acronym The BENEFICIAL Study (The Benefits Claims and Administrative Data Linkage Study). The BENEFICIAL Study will have its own Twitter account to tweet about events, progress and related work. The primary communication for this project will be via a series of small Project Steering Group meetings, a final research seminar, a report in association with the DSD, and a media press release of the findings which will be aimed to correspond with the publication of a journal article. A policy briefing paper will also be produced and presented at the Northern Ireland Assembly's scheduled Research and Information Services Knowledge Exchange Seminar 2016/17.

Methodologically, the DSD, academia and the ADRN will benefit from the experience of establishing a legal data sharing gateway and successfully linking these administrative data sources. This knowledge may be carried forward to future linkage projects utilising similar data and with similar data custodians. Indirectly, individuals such as policy makers, employers and health professionals may be able to utilise this research in their day to day activities, with a raised awareness of the factors that are associated with benefits eligibility.