It is clear that adult social care in the United Kingdom (UK), as in many other countries, faces serious challenges, most simply summarised as rising demand from demographic changes and greater pressure on available resources. The interventions to address this will need to be at all levels (national policy and legislation, managing local systems and in individual practice), and will be multifaceted. Better supply and use of high-quality research will be crucial in all of these respects, including of economic evidence to help make decisions about how to manage the available resources.
In this context, Rojas‐Garcia and colleagues review the literature for evidence about which interventions or approaches are effective in promoting independence and preventing demand for social care support among adults with intellectual disability. As the authors note, many people living with intellectual disabilities do not receive formal support services. Of those receiving services, about 12% are people with an intellectual disability, but this accounts for 39% of adult social care spending. Spending on this area is increasing as demand is growing in the UK, and internationally, as life expectancy improves amongst this group of people. The authors are, then, interested in the case for investing in interventions that may reduce or delay the call on more expensive services.
The authors organised their review of the evidence using a prevention framework derived from the literature. This comprised 6 domains, namely prevention by:
- providing the right care at a time of crisis;
- supporting progression towards greater, or maintaining, independence;
- supporting people’s ability to self‐manage long‐term physical conditions;
- promoting healthy lifestyles to reduce impact or delay onset of co-morbid chronic conditions;
- supporting people with intellectual disabilities and additional needs, such as mental ill health or reducing behaviour that challenges and;
- supporting caregivers in their carer roles and promoting/maintaining their health and wellbeing
The authors undertook a systematic scoping review of the evidence on their topic. There are many types of literature review, and the authors justify the approach they adopted and clearly set out all stages they undertook. They followed an established framework for doing this, namely the Preferred Reporting Items for Systematic Reviews and Meta‐analyses (PRISMA) statement. The authors searched for academic and grey literature, the latter being, for example, reports published but not in peer-reviewed academic journals. They detail the comprehensive set of databases they used to conduct the search and their search terms, along with the rigorous processes they undertook to sort the articles they found.
They focused on studies of interventions specifically for adults with intellectual disabilities, rather than all prevention activities aimed more generally across the population. As desirable as mainstream, inclusive services are, this would be a separate topic for a review of the evidence. They excluded interventions for younger people. Arguably we could have more impact by starting prevention support younger in people’s lives, but as services are organised separately for younger people and adults, the authors’ focus is justified. Similarly they exclude research concerning offenders who have intellectual disabilities, which is another justified argument in focusing their search.
Crucially, they were concerned with papers that also provided evidence of impact on service needs and economic evaluation of this, rather than only descriptions of the prevention intervention. The authors acknowledge that systems of care differ widely across countries but included international studies beyond the UK where relevant to their prevention focus. From initial search results of over 9,000 papers the authors identified 14 to include in their review. The authors state the many reasons for excluding studies from that initial large pool of papers, e.g. work not focused on adults, or not being in a social care context. In part the number of included studies was small because of the authors’ specific search for economic evidence in each study. 10 of the 14 papers were UK focused.
The 14 studies included in the review related to 3 of the 6 domains in the prevention framework they used; they did not find robust evidence for the other 3 domains, itself a noteworthy finding. The domains they did find evidence for are:
2. promoting independence (n = 5 of the studies), i.e. research comparing a range of accommodation types, and research on individual personal budgets. These studies compared different models of living arrangement, such as supported living versus group homes, and village community versus residential campus. Evidence did indicate positive outcomes, but also raised issues to be attentive to in these forms of support (see below). Economic evidence suggested that more independent-focused arrangements were less expensive (though longer-term costs were not considered). 1 study on personal budgets found no evidence for relative cost-effectiveness for not/having a budget in relation to social care or mental health outcomes;
3. promoting self‐management (n = 2), i.e. studies covered the impact of a health check, and a rehabilitation intervention. The studies reported some positive preventative outcomes, but the analyses, especially the economic evaluations, faced methodological limitations;
5. targeted support for people with additional needs (n = 7), i.e. 6 papers concerned support for people whose behaviour challenges (cognitive behavioural therapy, pharmaceutical intervention, active support training, and positive behavioural support), and 1 on intensive case management for people with psychosis. Being a heterogenous set of interventions and studies it is difficult to summarise and compare results, but on the whole the evidence and economic analyses for understanding preventative and economic impact were limited by methodological limitations.
The authors note that in their initial search they did find more papers across all of the domains of their framework that were concerned with outcomes that may be deemed as preventative, but the studies did not explicitly link these to evaluation of the impact on care needs, so they could not be included in this review.
Strengths and limitations
The authors discuss the strengths and limitations of their study. The strengths include it being a rare systematic scoping review in this field and the transparent process they set out. This provides a clear overview of the evidence for their topic.
The key limitation for the study was the limited evidence available to the authors to include, especially the gaps where several of the elements of their framework had no relevant studies to analyse. Another key gap across the domains is the lack of linked data between services to identify costs, savings and outcomes across them, such as between social care and health services. Indeed, the general lack of robust economic evidence was a glaring gap in this field. Being able to highlight this specifically in term of the domains of their framework is helpful for focusing future research, though, unfortunately, not as immediately helpful for improving practice as we would like.
Implications for practice
The paper helpfully summarises the available key evidence on the topic and this could be used to better inform local decisions, though decision-makers need to take note of the detail in the evidence. For example, in deciding which types of accommodation to commission it is helpful to know which supported certain outcomes, but also important is the need to consider factors to be mindful of in relation to each model. For example, the evidence on living arrangements focused on helping people live more independently (such as supported living compared to residential living) indicated that people can have more opportunities for choice and community involvement with wider social networks, but they may also have greater risk of experiencing money problems and reduced access to health care. Further, the work suggested that more choice and community activity might not always lead to higher quality of life.
The evidence comparing other models of accommodation (village community clustered, residential campus style, and dispersed) provides excellent detail on the costs of each model and the outcomes they can produce in terms of quality of life, independence and control – but also indicates that each model is best suited to people in different circumstances.
Also, the review highlights the need to look at costs and impact across systems. The study of intensive care management, for example, found the intervention to be overall cost-effective, and costs to health care decreased, but the costs of social care increased. This was not always done for the interventions included. Similarly, studies were often methodologically limited in terms of their ability to take a longer-term view of prevention, outcomes and costs.
This is all a reminder of the need for holistic consideration in deciding which services work for whom and in what ways. Although as the review shows, the evidence base for prevention impact on need for services is limited it is better to have some such evidence to help improve decisions than to have none. However, the paper really draws attention to the limited evidence base for prevention work in social care for adults living with intellectual disabilities. There is a limited range of models or interventions that have been robustly evaluated to provide any economic evidence, and there is definitely a need for more evidence comparing the outcomes and costs between interventions to help decision makers decide which to commission and for whom.
There is clearly a need for more studies of prevention interventions for people living with intellectual disabilities and to develop the economic basis for making decisions. The economic evidence within the included papers was also often limited. There was no evidence for three domains of their framework (providing right care at a time of crisis; promoting informal care capacity; and, promoting healthy lifestyles). The evidence on promoting independence tended to focus on comparing different models of living arrangements – not surprising given the costs associated with this area of social care. Indeed, the authors note in searching for studies that fitted their inclusion criteria they: “were unable to identify any studies of interventions or approaches aiming to improve functional living skills, access to employment or engagement with community activities, which linked these outcomes with changes in support needs or costs of social care”.
Some papers concerning potentially important interventions, such as those aimed at improving body mass index (BMI) or carer life satisfaction, were not included in this review as they did not link the study of outcomes to economic evaluation. There is clearly an opportunity to more robustly develop the evidence for these interventions to assist with service development. Additionally, the authors note the very limited consideration of informal care from family, friends, social networks and third sector groups, which would be vital to factor in to developing the prevention evidence. Similarly, developing a more longitudinal perspective for all interventions would be helpful, particularly in the context of ongoing reconfiguration of provision in response to austerity.
On the whole the perspective of prevention raises concern about equality of support and outcomes. People with intellectual disabilities already face significant health inequalities. Without a robust evidence base to prevention these inequalities are at risk of worsening. There is clearly a long way to go to develop a more robust evidence base for prevention work for people living with intellectual disabilities. In particular, the evidence base for interventions to help people live fuller and more independent lives and be more involved in decisions about their lifestyles is lacking. We need to find better ways of developing, evaluating and reporting these aspects of practice and the economic evidence for them.
Statement of interests
No interests to declare
Rojas-Garcia A, Woodhead C, Imwensi E, Hassiotis A, Aspinal F. Managing demand for social care among adults with intellectual disabilities: A systematic scoping review. Journal of Applied Research in Intellectual Disabilities. 2020 Mar;33(2):111-125. doi: 10.1111/jar.12652. Epub 2019 Aug 7. PMID: 31390116. Available from https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12652