Plain language summary
We describe the workshops we held to work with different people to produce our project recommendations.
We talk about the Easy Read resources we shared with self-advocacy groups so they could join in this work.
We describe what kind of issues were talked about in the workshops.
We describe two resources that have been produced to help professionals and family carers support older people with learning disabilities on the Open University website.
This WP was designed to deliver the final project objective (5):
To co-produce actionable recommendations for commissioners and providers, resources and decision-aids for carers and PWLD and ‘BTCO’, and online training materials about care in later life for social workers and professional carers.
Two co-production events were held, a hybrid event in Manchester and online event, with an Easy Read pack cascaded to self-advocacy and family carer groups across the UK. Our dissemination plan (see Appendix 4) included the production of decision aid tools and resources for family carers, two courses on the OU OpenLearn platform, one aimed at family carers and one at support workers and health and social care professionals, and a course published on the British Association of Social Workers (BASW) website.
An additional stakeholder event was added to the project design after the award of additional funding to extend our focus on the provision of support in the north of England.
Co-production events
Two co-production events were held to share preliminary findings and discuss the implications of these with a stakeholder audience. These were designed to be formative, with the discussion in the first event feeding into the design of the second. The first event was hybrid and took place on 16 November 2022. Forty-five people attended (16 online and 29 in person at Manchester Metropolitan University). The second event took place on 14 December 2022 online and was attended by 32 participants. Both events lasted 2 hours 15 minutes. Participating stakeholders represented a variety of organisations including self-advocacy group members, family carers, representatives from NHSE and regional trusts, the CQC, LA delegates, disability charity organisations, service providers, commissioners and academics. The event was also attended by members of the research team, co-researchers and some Professional and Public Advisory Group members.
The two events had a similar structure. The research team introduced the research project and explained work done in WPs 1–4. An ice-breaker activity focused on collecting excuses for poor support used to justify poor practice. This was followed by two short films based on initial findings from WPs 3 and 4.
The WP3 film, ‘Living well, ageing well’, presented the ethnography work, summarising early findings around what it means to live well and age well with a learning disability. A case study described what excellent individualised support looks like and highlighted the role of providers. The film also flagged some negative findings and raised questions around these to be considered by the audience.
The WP4 film, ‘Thinking ahead’, focused on co-produced research on thinking ahead and EOLC. The film showed examples of proactive EOL planning and challenges the research identified as well as details of the discussion cards (see Chapter 6, section Stage 2: co-designing resources to support older people with learning disabilities and their families to prepare for the future).
The audiences broke into small groups to discuss key questions emerging from the research. The first event focused on questions arising from our developing analysis:
Where are the social workers?
Why are families still so concerned about the future of their children?
Why is good support still so rare?
Who is responsible for older
PWLD who do not have a family?
Why is there so little focus on people ageing?
In the second event, we focused on four broader questions about support practice that reflected our ongoing analysis and feedback from the first event. There was inevitable overlap in places:
How do you know if support is good or excellent?
What helps you to know that or could help you?
Why did our research find poor practice?
Who is and who should be responsible for making sure people have good lives?
What did we learn?
In the following section, we summarise the discussion in relation to the questions asked and present our developing co-produced recommendations.
Where are the social workers?
Attendees discussed current pressures within social work including poor pay and conditions and how the role has become one of reactive practices largely focused on crisis management. The question of who is responsible for co-ordinating support and being the first point of contact for PWLD and their families was discussed. Should or do social workers have an elevated responsibility to oversee support for PWLD as they grow older?
Why are families still so concerned about the future of their children?
Attendees stressed that most families love and care, but are also scared to think ahead. Stories about abuses in social care settings and previous experiences with support services further erode trust that the system will support their relatives. Concern was raised that families will be prevented from being involved in the lives of their adult children in the future.
Why is good support still so rare?
A lack of money and resources, and the unequal distribution of these, was discussed, as were related staffing issues around pay, poor conditions and retention, poor service culture and lack of effective leadership. There is a lack of knowledge about what support is available and a lack of awareness of what good support looks like. Good practice examples need to be amplified and shared, and a focus on values-based recruitment is needed to change organisational culture.
There are further systemic barriers to employment and other opportunities for PWLD, and the lack of recognition that people are growing older means that changing support needs can be misinterpreted as somehow ‘going backwards’ or failing.
This question was challenged by some attendees, who attributed the lack of good support to individual staff members.
Who is responsible for older people with learning disabilities who do not have a family?
Answers included PWLD themselves, the state, and all of us, although the last position is ambiguous, and there was acknowledgement that while ideally society would be there to take responsibility, in practice the negative views that many people still hold about PWLD undermine this aspiration. Discussion touched on unsupportive families or families who lack trust in social care provision, the way in which older PWLD are framed negatively, and the interdependency that can develop between PWLD and family members as they grow older. The well-being and preventative strategies embedded within the Care Act were acknowledged as failing in practice.
Why is there so little focus on people ageing?
There was consensus there is a broad assumption that PWLD do not live to older age. Furthermore, the focus on independence as the goal can potentially skew views on people becoming dependent. This in turn can be seen as a failure of services, as opposed to being considered part of growing older.
How do you know that support is good or excellent?
The importance of ongoing feedback from people being supported and their families and evidence that feedback is acted on was seen as central, alongside observing interactions between PWLD and staff or asking if people are happy. The respectful use of language and connections and affection between people were flagged as important, together with evidence of person-centred solutions and the importance of supporting relationships and enabling PWLD to learn new skills. Evidence that people are supported to be part of their community is a further indicator of good support. Asking service managers was suggested, as this group have a good idea about what is happening on the ground. The point was made that you need to experience good support before you can recognise it.
What helps or could help people to find good or excellent examples of support?
Here answers included sharing knowledge about good support and being familiar with what is important to people. The use of paid quality checkers with lived experience to generate knowledge about good service provision was supported, and questions were again raised about people who may not have family advocates, for example, people in long-term institutionalised care.
Why did we find poor support when the services were judged to be excellent?
This was a fundamental question to our project, and feedback was wide-ranging. Attendees commented that there is a wider lack of aspiration around the lives of PWLD, which allows the drift of staff into doing little, particularly in early post-pandemic conditions when new staff might have thought limited activities were the norm. Commissioners and PWLD and their families may have different priorities. Attendees discussed the lack of knowledge that some commissioners have about services, while there was acknowledgement about the engaged commissioners who participated in WP3 and, indeed, some of those in attendance at the event. While the importance of spending time in services was again raised, commissioners responded that this is not practical given the number of services involved. The question of social worker involvement re-emerged, and it was suggested that commissioners (or social workers) could approach potential issues in a more collaborative way by asking ‘We have noticed that this is an issue; how can we support you?’.
Issues around resources for service commission and ensuring that staff match the person’s needs with consistency over time came up again. The paradoxical consequence of family members sometimes accepting poor support because they did not want to disrupt the person’s life with a potential move was linked to discussion about situations in which part of a service may not be good rather than the whole.
Who is and who should be responsible for making sure people have good lives?
In the second event this wider question again led to a lack of clarity or consensus. ‘All of us’ (including local councillors and members of Parliament), commissioners, social workers, ‘decision-makers’, PWLD themselves, and family members were suggested by some attendees. The point that ‘everyone’ can mean ‘no one’ in practice was made, as was concern that family carers should not be expected to take responsibility across their lifetime. The importance of good leadership, co-operation and a collective responsibility were again highlighted.
Key points identified across both events:
a lack of attention to
PWLD growing older
a lack of resources for commissioning and provision
reactive rather than proactive practices and a lack of sharing or recognising good practice
a lack of resources to provide excellent services
a shortage of information and knowledge about good services
ambiguity around who is responsible for co-ordinating the support for people as they grow older
the failure of the Care Act to improve the lives of
PWLDhigh turnover and failure to match staff with needs and interests of
PWLDa lack of trust in services on the part of family carers and
PWLD.
Emerging recommendations from stakeholder groups and the cascaded materials
The stakeholder events were designed to get audiences to think about issues arising from developing project findings, discuss and raise further questions, and identify potential solutions to how the support for PWLD and their families can be improved as they grow older. From this, we developed a list of recommendations that can be grouped into recommendations that improve (1) information, (2) oversight and lesson learning and (3) individual support.
Recommendations that raise awareness and improve access to information
Recommendations that improve oversight and lesson learning across the sector
Introduce peer learning and critical friends among providers and commissioners. Make good practice well known and have an open and supportive peer-learning set-up.
Fund self-advocacy groups to support people in making choices locally.
Regularly and proactively listen to people and their families.
Recommendations that improve individual support
Match staff to people, encourage and sustain good relationships between the person and staff and avoid frequent changes of key workers.
Change staff appraisal processes to become more celebratory and focus on the small things that make a difference.
Cascading session plans and materials
To reach a wider range of stakeholders and enable the involvement of self-advocacy groups in the co-production of recommendations, we created three 1-hour session plans for self-advocacy groups to engage with independently. Each session plan was produced in standard and Easy Read versions (see Appendix 5). The sessions focused on growing older well, making plans (including EOL plans) and how providers can work better. Each session included a short activity (a wordsearch or simple crossword in the standard version; a spot-the-difference colouring picture in the Easy Read version), a comic (standard version) or Easy Read information about the topic of the session based on our preliminary findings and a set of questions for the groups to consider and engage with (example questions: ‘Can you think of some things that help to make a home a caring place?’; ‘Do you have any ideas about what might help PWLD grow older well?’).
The session plans were shared with seven organisations that expressed interest via social media or team networks. We received feedback from a self-advocacy group based in the north. The feedback carried similar recommendations around relationship building and community belonging of PWLD, as well as around person-centred support. Additional issues around ageing were highlighted, such as those faced by PWLD who cannot rely on their family for support and advocacy. The sessions also offered additional recommendations around:
Healthy ageing, with focus on regular health checks, general practitioner (GP) appointments, and related follow-up measures. The need to increase awareness of health inequalities, healthy nutrition and physical activity was also identified.
Staff recruitment and values, where staff should be recruited based on being kind, encouraging and knowledgeable. Staff should also be able to take on difficult conversations and have capacity to build relationships with people they support.
Support choice, with ‘try before you buy’ schemes to ensure that people are not stuck with support that is not well matched to the person.
The additional stakeholder event
A third stakeholder event was held online on 17 February 2023. This had a dual purpose: to share the project findings and further discuss the developing recommendations, and to discuss with attendees largely based in the north of England (outside the research team) what their research priorities were.
There were 22 attendees, made up of PWLD, family carers, and representatives from northern self-advocacy groups and support organisations such as Inclusion North and Mencap Kirklees. Ahead of the event we shared an Easy Read document ‘Things that matter’ () and asked people to think about their priorities.
The initial discussion after the two films had been shown again covered the following points:
One voluntary organisation in the north of England (Mencap in Kirklees) encourages thinking about growing older, but cited obstacles such as sourcing buildings that meet people’s needs in the right places that commissioners will not fund.
Challenges around finding and recognising good support led to discussion around the importance of word of mouth, and the idea of a TripAdvisor-like system. There was mention of ‘glossy brochures’ that present providers well, and the need for a ‘try before you buy’ approach as well as a tendency for commissioners to become fixed on one offering rather than a range of options.
Again, the question of who is responsible for co-ordinating the support for older
PWLD was raised.
The issue of waiting lists for a social worker if someone wants to move home was raised, and even if good provision was identified, it might not be offered by commissioners if funding is not available, or people may be told they are not eligible for support. Decisions could take several years when they need not do so.
In response to the ‘Things that matter’ exercise, there was largely consensus around being supported to stay healthy, living in a house you choose with people you choose, and being supported by people you know and like. It was noted that some people do not have family. One family carer thought the remaining points would follow on from living where you choose and being supported by people you know and like. For her, the least important point was planning for old age and death as she thought that this would not be at the forefront of her daughter’s mind. The importance of friendships (beyond support staff) and intimate relationships were highlighted by attendees, as were the opportunities to work in a paid or voluntary capacity. There was a suggestion there should be a Minister for PWLD, and the way in which PWLD are excluded from mainstream support for older people was raised.
The final section focused on what issues people felt were important to address in future research. This generated the following areas:
transport in rural areas
a focus on the aspiration of home ownership among
PWLD with caution that this may not be ‘utopia’, as it can be expensive and people may become isolated living alone
the importance of pet ownership
the importance of friendships and intimate relationships
loneliness among older
PWLDhow difficult it is for
PWLD to access mainstream support for older people
knowing your employment rights and benefits-related issues.
Inclusion North representatives offered to cascade project findings across the north-east.
OpenLearn resources
In year 3 of the project, the OU team (Tilley, Larkin and Pawlyn) commenced work on two free OpenLearn courses. They liaised with the WP3 team to identify key findings to shape the development of learning materials for (1) health and social care practitioners and (2) family carers of older PWLD. The authors drew on interview transcripts, field notes and extensive case study material to ensure the educational materials were research informed and evidenced based. The findings were presented within three themes: ‘Supporting people to live well’, ‘Supporting people to age well’ and ‘A caring culture’. When these three areas of practice are in place, excellence emerges. We used the visual motif of a quilt to represent best practice, and the OpenLearn editors created an animation to facilitate learning around these themes (the ‘Quilt of excellence’).
To generate a more critical focus on our research findings and further support the learning journey, we included filmed interviews with expert panel members, who included two self-advocates, a family carer with considerable professional experience of supporting older PWLD and their families, and a community learning disability nurse. Panel members discuss their responses to course activities and case study material, offering guidance and reflections from their personal and professional experiences.
Supporting older people with learning disabilities and their families: a course for health and social care practitioners
This is a 6-hour module, comprising six ‘sessions’. The introduction outlines the course structure and approach, provides details about the underpinning research and sets out the core learning outcomes. It introduces the ‘Quilt of excellence’ and invites practitioners to reflect on their understanding and experience of the term ‘BTCO’ and what this might mean in the context of people getting older. The next four sessions are organised around individual case studies: ‘Becky’, a woman in her 40s, currently living with her parents and preparing to move; ‘Geoff’ a man in his seventies, who living with Shared Lives carers; ‘Robin’, a man with a history of being moved around services (often out of area), now settled in a Supported Living home in his local community; and ‘Susie’, a woman in her fifties with complex health needs, living in a residential care home with nursing provision. Students are invited to engage with extracts of empirical data relating to each person, reflecting on the implications for their own practice. For each case study, we sought additional consent from the person and/or their family members to include their material. The course concludes with a session synthesising the key learning points, an activity exploring how to use the WP4 ‘Planning Ahead’ cards and revisiting the ‘Quilt of excellence’ with an eye to broader systems-based issues.
Supporting an older family member with learning disabilities: a course for family carers
This 4-hour module comprises six sessions focused on providing family carers with practical advice to support planning ahead and to help build resilience. The introduction outlines the course structure and core learning outcomes. Throughout the course, learners are encouraged to keep a log of ‘top tips’ that they can return to (during the course and in the future) and adapt to their own circumstances.
Session 2 explores what is meant by planning ahead in the context of an older family member with learning disabilities, using case material from ‘Becky’ and her parents. Session 3 focuses on developing a plan and draws on the example of ‘Sam’ and his sibling ‘Mel’, reflecting on the experience of planning ahead in the context of Shared Lives provision. Session 4 supports learners to develop skills to advocate for an older family member (and for oneself) to successfully plan ahead. Session 5 explores how family carers can look after themselves and protect their health and well-being in the context of planning ahead and advocating in older age. The final session brings the learning together and introduces students to the ‘Planning Ahead’ cards and ‘Quilt of excellence’. Students are invited to reflect on their top tips list and decide on some next steps.
The courses can be found here:
www.open.edu/openlearn/health-sports-psychology/supporting-older-people-learning-disabilities-and-their-families/content-section-overview?active-tab=description-tab
www.open.edu/openlearn/health-sports-psychology/caring-older-family-member-learning-disabilities/content-section-overview?active-tab=description-tab
Full project outputs are listed in Appendix 4.
