Leading UK autism research charity, Autistica, with its partners The CareTech Charitable Foundation have launched the Social Care Action Fund to find evidence-based improvements to the social care provision for autistic adults.
The research supported by the Social Care Action Fund aims to identify ways to ensure autistic people are at the heart of decisions about their care, and that services are personalised, safe and effective.
“Rory is in supported living, but we are still very involved with his care because of the disjointed nature of the services provided by different organisations and agencies. When there is continuity and he has carers who are well-trained, caring and who understand his needs, it makes a world of difference to him, and to us.”
Sue, mother to Rory.
Over three years, the Social Care Action Fund will proceed in two annual stages:
- Autistica will run an annual call for Grant Development Awards designed to provide researchers with seed funding to develop their proposals for further funding, totaling up to £100,000 in funding.
- Autistica will support the National Institute of Health Research (NIHR) annual Research for Social Care Call by providing a total of up to £500,000 in additional top-up funding to up to five social care research studies focused on autistic adults.
Following the NIHR’s own criteria, the research studies funded as part of this programme will focus on one of the below areas:
- Social care needs and relevant outcomes (which could be quality of life, social or health care related, as appropriate to the study or its population)
- Developing a more robust evidence base for current ways of working
- Developing and evaluating new ways of delivering social care
- Secondary data analysis, record linkage and reviews
- Research methods development
- Care users’ and carers’ circumstances and needs
- Those who deliver social care, including unpaid carers and the staff and professionals involved in the delivery of social care (e.g., social workers)
The NIHR runs a £3m annual call for social care research applications, with each successful project awarded up to £350,000. The Social Care Action Fund will leverage this annual call at 3.5:1, potentially providing additional funding of up to £100,000 to up to five autism-related research studies if they are deemed fundable by the NIHR peer review process.
Autistica staff members will help researchers develop their ideas and studies with seed funding and will support them to involve autistic people in their research.
In addition, The CareTech Charitable Foundation, along with their donation of £160,000 supporting the fund, will provide researchers with care sector expertise and insights through CareTech staff involvement, workshop site visits to CareTech locations, recruitment of participants for studies, and will help ensure the Social Care Action Fund has a tangible impact on social care practice.
“CareTech Foundation is thrilled and honoured to contribute to the Social Care Action Fund and to be able to lend our expertise to the chosen research projects. Implementation of the chosen research projects into real world social care situations will be and essential part of ensuring the impact of the research on social care policies and practices for autistic adults across the UK”
Jonathan Freeman, CEO, CareTech Charitable Foundation
Autistic adults across the UK are being left behind, and current research does not provide long-term solutions. The Social Care Action Fund will change that.
Research shows that autistic people often face poor mental and physical health throughout their lives, much higher rates of early death, one of the highest rates of unemployment in society and limited social inclusion, but despite often having a high level of support needs, in particular autistic people who also have a learning disability, there has been a historic under investment in autism social care research.
Overall, too few funders support social care research leading to few researchers focusing on it, and so we have very little high-quality evidence about how best to support autistic adults to live happy, fulfilling and autonomous lives .
The Social Care Action Fund supported by Autistica’s reputation and track record for funding research that leads to tangible outcomes, paired with the NIHR’s robust and world-leading peer review process, will ensure only the highest quality projects most likely to have a practical impact are funded as part of the Social Care Action Fund.
“Autistic people face substantial inequalities in terms of their life expectancy, health and well-being. For many autistic people high-quality social care support is key to alleviating these inequalities, we must base this support on a solid evidence base that shows the care provided is not only safe but also that it actually improves lives. Yet barely any high-quality evidence like this exists, it is time to change this and the Social Care Action Fund is a fantastic step in the right direction.”
Dr Lorcan Kenny, Head of Research, Autistica.
Proposals for funding are now being accepted by the fund.