In November 2020’s issue of CMM we explained why we planned to carry out research about, and with, older people with learning disabilities and their families.
There is little research in this area; in part because it’s only in more recent times that people with learning disabilities are living longer.
We know that this ‘longer life’ is still likely to end on average 20 years before others and with earlier onset of diseases of older age. The research stemmed from the 2016 Embolden Project led by Oxfordshire Family Support Network (OxFSN), which partnered the Universities in this research. In Oxfordshire, many older people with learning disabilities living in the family home were not known to local services, in part due to a lack of trust in services. People’s needs can change as they get older, and they may need more support and/or different accommodation to what is immediately available to them. For some people, this can lead to a less than ideal crisis placement, becoming a self-fulfilling prophecy of a poor match between need and services.
Project focus
Our nationally funded project consisted of several work packages, including reviews of what is already known. Earlier research has tended to focus on what does not work well in services for people in the community and residential care. In contrast, our focus in this project was learning from good practice. One work package involved finding out what works well in community and residential services for older people (aged 40 plus) with learning disabilities and ‘behaviour that challenges others’, and their families.
We developed a set of criteria of what ‘excellent support’ looks like. Some of these criteria came from published research, from service standards of NHS England and other bodies, and The National Institute for Health and Care Excellence (NICE) guidelines. At the same time, we wanted to identify exemplar services to study in-depth, to work out for whom and why they worked well for older people with learning disabilities, including those who are labelled as having ‘behaviours that challenge others’.
We consulted 259 people (providers and service commissioners in health and social care) via email and by attending work meetings. 89 people from the group were also interviewed or completed a survey to help us gather more detailed information. We looked at services rated `Outstanding’ by the Care Quality Commission (CQC), or at least Outstanding on ‘Care’ and ‘Safe’ domains. In addition to developing a set of criteria of excellence, we produced a list of nominated excellent services.
These lists were discussed with our Public Advisory Group, which included older people with learning disabilities and family members. Group members asked searching questions which stimulated further investigation of the criteria of excellence and exemplar services. For example, they wanted people’s lives to be embedded in local communities and continuity of care among staff who had similar values and interests:
‘We employ people on the basis of who he is, people that will match very well with him, people that got on well with him. The other important thing to say is it’s in each member of staff’s contract, so, each person we support has got their own staff team.’ (Provider of supported living).
We took the refined lists to our Professional Advisory Group, which included the NHS national leads for end of life care and for learning disabilities, CQC, local health and social care commissioners, providers and members of learning disability advocacy bodies. From this, a shortlist of services was discussed with our Public Advisory Group and our Study Steering Committee. The Committee included nationally renowned academic and lived experience experts. The aim was to take the shortlist of services forwards for in-depth study in our next work package.
Delivering excellence
The final criteria of excellence we used were:
- Personalisation, with goals, daily plans and activities shared and updated.
- Matching staff to people being supported.
- Personalised living space and choice around whom this is shared with.
- Proactive, preventative health care involving primary care and involvement of NHS multidisciplinary learning disability teams.
- Staff recruitment underpinned with the right values and skills.
- High staff retention to provide continuity of care.
- Inclusive communication methods.
- Family involvement.
- Community engagement and inclusion.
- Trauma informed services where appropriate.
- Good practices such as end of life planning, dementia assessment and management, which should be embedded as routine.
- Commissioner endorsement of provider quality and resilience (low placement breakdown).
- Commissioners working with providers, people with learning disabilities and families – helping to build capacity for future services.
The four broad models of support we identified were:
- People living with their families, possibly with local authority funded day activities and/or personal budgets and
domiciliary services. - Supported living via home ownership, tenancy and/or shared equity arrangement for accommodation and support provided in a personalised care package.
- Shared Lives provision with paid care provided by an approved family in their home. This can be for a family break, a step towards independent living or long-term living.
- Residential accommodation with or without nursing care.
We selected the services of eight providers for in-depth study. This involved researchers, including researchers with learning disabilities and family carers, spending time at each site. The researchers observed and took part in the various activities and outings and interviewed people with learning disabilities, support workers, family members, managers and commissioners.
Our findings in this part of the research were organised into environmental, social and organisational factors which are interconnected and could be analysed as distinct themes. We found people can be supported to lead flourishing lives as they grow older. One example from the observation notes of one participant who lives in supported living: ‘You’ve got a lovely home, Z,’ I say [Researcher]. ‘I do, don’t I?’ says Z [participant with learning disabilities] proudly. I think that’s what ‘house-proud’ looks like. The place feels homely, simple, but warm (figuratively and literally as the heating is on) and lived in… ‘Z is very proud of it [the house],’ says B (Support worker). ‘Yeah, I hope I can stay here forever and ever,’ says Z (Ethnography notes 26.10.2021).
We also observed evidence of poor support in some parts of services labelled as ‘excellent’.
Researcher: When I get to C’s [participant with learning disabilities] room I ask if I should close the door and she says ‘yeah, close it’. With the door closed, the room feels much cosier and calmer. The door is a two-part situation, with stops at the bottom on both sides. I doubt C (Resident) can close and open it herself… The house is noisy… I then remember she moved to this house recently, so I ask her about that… ‘Remind me why you wanted to leave the last place?’ ‘It was because of M, he was always making noises, was loud. Was getting on my nerves,’ C says. ‘And is it better here?’ I ask. ‘Not really,’ C says. (Ethnography notes 7.6.2022).
We found that older people with learning disabilities are not always presented with choices about opportunities to lead fulfilling and meaningful lives. We believe this is due to a lack of understanding of what good support looks like and because there is limited up-to-date information on the support available in local areas. Also, families may be reluctant to plan ahead because they are unaware of (or distrust) the services offered and because there is little or no consideration of people with learning disabilities growing older.
For more information on the research, visit: https://wels.open.ac.uk/research/growing-older-planning-ahead/ and:
https://www.fundingawards.nihr.ac.uk/award/NIHR129491
Upskilling the workforce
Key outputs from the project are two freely available courses on OpenLearn: Supporting older people with learning disabilities and their families (for health and social care practitioners) and Caring for an older family member with learning disabilities (for family carers). These resources were created by Open University (OU) academics Professor Liz Tilley, Professor Mary Larkin and Jillian Pawlyn with input from the wider project team and OU editors. The courses are underpinned by the research that was led by Professor Sara Ryan at Manchester Metropolitan University and Professor Louise Wallace at the Open University.
Visit the OU website to find out more information about the courses:
https://www.open.edu/openlearn/health-sports-psychology/supporting-older-people-learning-disabilities-and-their-families/content-section-overview?active-tab=description-tab and:
https://www.open.edu/openlearn/health-sports-psychology/caring-older-family-member-learning-disabilities/content-section-overview?active-tab=description-tab
Both courses draw on real-life case study material from the project and invite learners to work through a range of issues and dilemmas with a continual focus on how people with learning disabilities can be supported to lead good lives in older age. The views and experiences of an expert panel that includes two self-advocates and their supporter; a family carer; and a health and social care professional are woven throughout the course materials to provide additional insights. We believe that the courses fill a critical gap in the provision of education and training on the needs and experiences of older people with learning disabilities, both from a professional and family perspective.
The six-hour professionals course, Supporting older people with learning disabilities and their families, is designed for health and social care professionals. It explores the needs of older people with learning disabilities, including people who may at times display ‘behaviours that challenge others’. It delves into the components of excellent care for people who are getting older with a learning disability and it supports professional care staff to apply the components of excellent care to the people they work with. We suggest this can provide useful and certified CPD. Bite-sized activities and films may be useful for staff induction, or to stimulate discussion with staff.
DISCLAIMER
The programme presents independent research funded by the NIHR under its Health and Care Services Delivery Research funding scheme (129491). The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.