Enduring invisibility and ‘talking the talk’

The lives of older people with learning disabilities who live at home with family are often invisible in both social care research and wider society, as are the experiences of their parents and other family members. This is despite living to an increasingly older age. Chris Hatton, Professor of Learning Disabilities, Manchester Metropolitan University, estimates there are now around 81,000 people with learning disabilities aged over 50 in England, many of whom are not in touch with services.   Despite policy initiatives, such as Valuing People, a strong focus on supporting people to lead independent lives and considerable ‘talk’ among policy makers, politicians, government departments, regulators and third sector bodies, parents of people with learning disabilities continue to care into their 80s or even 90s.

Love and impoverishment

Our project will address this longstanding reluctance among older parents to plan for their daughter or son’s move from the family home to independent supported living or larger residential setting as it can lead to an increased risk of crisis placements. Any crisis placement which may involve a care home or a hospital setting is necessarily disruptive for those directly involved and may impact upon other residents and staff.  A further related evidence gap is end of life care planning by older carers. The carers themselves are unable to retire and yet Carers Allowance stops when people receive their state pensions. Caring for a person, albeit through love, continues into retirement without payment and may reduce a focus on carers’ own end of life care. Policy and services appear to have done little to address this problem.

Growing older, planning ahead

Our project, funded in response to a NIHR commissioned call around ‘behaviours that challenge others’ aims to improve support for older people with learning disabilities, family and professional carers.

We will:

• Review what is written about this area
• Conduct a scoping review of current service provision to identify exemplars of good practice. We will include residential care, supported living and family support services and support interventions for older people with learning disabilities in order to capture the range of services and support
• Conduct an ethnographic study of four services to understand how good practice is commissioned and delivered
• Co-design and evaluate decision aid tools to support future planning and end of life care
• Co-produce actionable recommendations for commissioners and providers, resources and decision-aids for family carers and people with learning disabilities, and free online training materials about caring in later life for the public and professionals

Researchers from the Universities of Oxford, Manchester Metropolitan, St Georges and Kingston and the Open University will be working with self-advocates from My Life My Choice and Future Directions and family carers from Oxfordshire Family Support Network (OxFSN)

The idea for the project came from a recent Comic Relief-funded project ‘Embolden’ led by OxFSN. Embolden aimed to support, advocate for and empower older family carers who were caring for a family member with a learning disability in Oxfordshire. Over three years carers took part in a series of events on topics such as health, finance and housing. Issues of concern included consent, decision making, transition planning and financial assessments and older carers often .  Some of the people who took part in the Embolden study were featured in The Guardian and in a short film called ‘What will happen when I am no longer around’.

Best laid plans, and all that

As with many other projects, our carefully (and almost innocently) designed research plans, crafted in collaboration with the project team and wider engagement with the learning disability community, have been hit by COVID-19, and current restrictions on activities. Our proposed ethnographic study and co-production work around end –of-life care planning in particular are forcing us to think creatively around how to conduct research in a robust and rigorous way without necessarily meeting face to face. An unexpected development during the pandemic has been the way in which some people with learning disabilities and carers have taken to engaging via online platforms with appropriate support. Removing the stresses of travel and what can be experienced as intimidating meetings in university settings has been liberating for some. At the same time, forthcoming research from the OU will highlight the barriers others have faced getting online, especially in some service settings. We are currently thinking through the use of cameras in our ethnographic sites for staff and the people they support to capture their everyday lives as well as online ‘catch ups’ at different times across the week, including weekends and evenings.

In some respects, this thinking has forced us to re-examine our methods and ways of doing research that, on reflection, may have become ‘tired’ and taken for granted. Each alternative ‘COVID’ secure approach to research involves rich consideration of: ‘how?’ and ‘why?’; what are the ethical and research implications?; what does this mean for our research participants and partners?; what does this mean in terms of our aims and objectives, our project outputs and the potential impact of the project? We will treat this as a welcome challenge which, while it will inevitably involve dips and bumps across the next 30 months, will also liberate our research practices in unforeseen and important ways.

The programme presents independent research funded by the NIHR under its Health Services and Delivery Research funding scheme (129491). The views expressed in this blog are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

In July 2016, Oxfordshire Family Support Network (OxFSN) began a three-year project, Embolden, to support, advocate for and empower older family carers aged 60+ years who care for a family member with a learning disability.

This report is dedicated to the 215 family carers who brought Embolden to life. For access to this report click here