Summary brief: improving the lives of carers of adults with learning disabilities
In England in 2021/22, 36% of adults with learning disabilities aged 18-64 getting long-term social care (47,835 people) were living with their families[1]. There is no equivalent information for PWLD aged 65 and over. There are estimated to be over 900,000 adults with learning disabilities in England, most of whom are not recognised as such in any health or social care service.[2]
Key message
The lack of social care support to enable people with learning disabilities to lead flourishing lives means that many family carers can be compelled to support family members at home. There is little recognition or support for their caring roles. Fear of what will happen in the future, when they can no longer care, as well as constant fights to maintain the little support they have, has a severe detrimental impact on their mental and physical health.
Key Social Care & Benefits Policy Recommendations
1. Policy makers and service providers should adopt a human-rights led approach to transforming support for people with learning disabilities and their family carers.
2. Reform of social care, informed by those who use it and a human rights perspective, should be the priority for the next parliament.
3. Carer’s Allowance rates should be independently reviewed and revised to reflect the value of care given. The revised rate should be accompanied with a guarantee it will not lose value in real terms and will rise at least in line with inflation (triple lock).
4. Family carers should be able to claim the full amount of Carer’s Allowance and State Pension at the same time.
5. Review and revise the government’s Carers Action Plan[3] in the light of the lack of progress against its targets.
Research Projects
Our recent research projects reveal two unacknowledged human rights issues:
1. People with learning disabilities are often denied the opportunity to lead flourishing lives in their communities. This less favourable treatment represents a breach of the Human Rights Act: (Article14).
2. Family carers provide high levels of care work over extended time periods with a detrimental effect on their physical and mental health because of inadequate support from the state. This is a form of ‘servitude’ and a breach of the Human Rights Act (Article 4).
Parents and sibling carers tell us:
● they love the person they care for;
● they experience high levels of mental distress;
● they do not consider their relative to be a ‘burden’;
● their mental distress is primarily related to poor service provision, particularly the lack of provision of quality social care;
● there are no quality alternatives to them providing care now or in the future;
● the future is frightening;
● the care work they do is hidden from public view and undervalued;
● the COVID pandemic saw an exponential rise in the amount of care carried out by family carers and there is little evidence that things are improving post pandemic.
The consequences are:
● Family carers often provide care for their relatives with a learning disability over many decades with negative impacts on physical and mental health;
● Family carers experience high levels of anxiety about what will happen when they can no longer care for their relatives;
● Anxiety about the future impacts the mental health of family carers;
● Family carers are financially disadvantaged as they are pushed out of the labour market.
● Carers Allowance is inadequate; it currently stands at £81.90 per week (April 2024). For many family carers who care for more than 100+ hours per week this equates to 82p per hour;
● Financial disadvantage is made worse as carers age because it is not possible to claim the full amount of Carer's Allowance and State Pension. Many carers do not have other sources of income in retirement because of persistent exclusion from the labour market;
● Family care is not regulated, there are no requirements to support breaks from care, or to recognise that intense and/or sustained periods of care can be mentally and physically demanding.
Films
Family carers have made digital stories about their experiences of loving and caring for people with learning disabilities. They invite you to watch their films. You may find the content difficult to witness. We ask that you reflect on why this is and what you can do to make a difference in the lives of people with learning disabilities and family carers to support them to live flourishing lives.
Research Team Contact details:
Professor Katherine Runswick-Cole, The School of Education, The University of Sheffield
k.runswick-cole@sheffield.ac.uk
Professor Sara Ryan, The Department of Social Work and Social Care, Manchester Metropolitan University
sara.ryan@mmu.ac.uk
Appendix 1 - Project Summary: Tired of spinning plates: an exploration of the mental health experiences of adults and/or older carers of adults with learning disabilities. Award ID: NIHR135080
Research Questions
We will address the following specific research questions:
1. How do carers of adults with learning disabilities conceptualise and make sense of their own mental health across the life course?
2. What services, support and interventions do carers access (including: social prescribing; carers' passports; medication; talking therapies; peer support; complementary and alternative therapies) and how effective do they consider them to be?
3. What has been the impact of mental health issues on carers' family lives, ability to care, employment, friendship and social life?
4. What are the impacts of COVID-19 so far on carers' mental health, and how do carers perceive the medium and longer-term impacts and necessary support and interventions?
5. What do practitioners, providers and self-advocacy organisations need to know and do to support carers?
Background
Carers talk about the satisfaction and joy they take in their caring relationships, but they also experience many practical difficulties which can affect their mental health (DoHSC, 2018). Research shows a link between being a carer and poor mental health (DoHSC, 2018). Carers of adults with learning disabilities make up a quarter of the 9 million carers in the UK (DoHSC, 2018) but we know little about their mental health, their access to services and support and what they think good support looks like at different times in their lives.
The research aims to:
1. Address the gap in knowledge about how carers of adults with learning disabilities conceptualise and experience mental health across the life course;
2. Address the gap in knowledge about the perceived quality, accessibility and effectiveness of support for carers' mental health;
3. Explore the provision and uptake of support services, including barriers to accessing carers' support services, particularly from marginalised communities and groups;
4. Explore carers' perspectives on the effectiveness of interventions for carers (including: respite; medication; social prescribing; passport schemes; employment support; complementary/alternative therapies);
5. Explore the long-term impacts of the COVID-19 pandemic on carers' mental health; 6. Co-produce the project, generate new knowledge and share impactful solutions working with groups of carers as co-researchers, research participants and project advisors.
Methods
The project adopts a mixed method approach:
1. Convening a Tea, Cake and Spinning Plates Group which will act as the study PPI group and co researcher group;
2. Conducting a rapid literature review on the mental health of carers of adults with learning disabilities;
3. Co-design and delivery of an online exhibition to explore carers experiences of mental health and support;
4. Interviews and online storytelling workshops with carers to create new narratives of carer mental health;
5. Findings synthesis to generate learning and teaching resources for stakeholders.
6. Dissemination activities, including sharing films, outputs and events, to maximise impact
Timescales for delivery The project will run for 26 months with a start date of 1st May, 2022. Anticipated impact and dissemination Through a strategic approach to public engagement and dissemination, the project has the potential to raise awareness of the mental health of carers of adults with learning disabilities among carers, allied health and social care practitioners and the wider public.
This project is funded by the NIHR (135080/HSDR). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.