Recommendations for action and practical resources to support planning for people aged over 40 with learning disabilities and their family carers have been made, thanks to a recent research project.
I took part in the three-year Growing Older, Planning Ahead project, which involved collaboration between self-advocacy group My Life My Choice, Oxfordshire Family Support Network, the British Association of Social Workers and five universities including Manchester Metropolitan and the Open University.
The project was funded by the National Institute for Health and Care Research as part of a commissioned call relating to people with learning disabilities and “behaviours that challenge others”.
More people with learning disabilities are living to an older age and more than one in three of those aged 18-64 in England are living with their families. This can lead to them and their parents becoming mutually dependent, which can obstruct planning.
This should be viewed as a concern rather than an explanation for not thinking ahead; there is an implicit assumption that family carers should be supported to care for longer – which runs counter to policy rhetoric around autonomy, independence and control.
We had 26 people with learning disabilities and seven family carers involved as co-applicants on the funding proposal, advisory panel members, researchers and allies.
We found little attention was paid to the ageing of people with learning disabilities. This was unsurprising, given the project was designed with people with learning disabilities and family carers who had raised this area as a problem.
After the key transition period from childhood to adulthood, characterised by fear and disquiet about the future, people with learning disabilities become stuck in a rut of unchanging adulthood across the decades.
We found they were excluded from conventional parts of life such as work, relationships, children and retirement; there were no definitive markers of time passing.
An implicit assumption that family carers should be supported to care for longer runs counter to policy rhetoric around autonomy and control
Indeed, it may only be with the chronic ill health or death of a family carer that people’s ageing becomes visible to services. This means they are further denied the planning needed to age actively and continue to live at home in later life with good support.
Where and how people live
We found four main types of homes people live in as they grow older: with their parents or family with the use of day centres; independent supported living in a house by themselves or with a small group of people, with paid support staff; nursing and residential homes; and shared lives schemes (living with another family paid to support them).
There were some examples of excellent provision, with people supported by staff they sometimes recruited themselves, who they liked and who understood them well.
With the right support, organisation and environment, people can develop relationships, interests and aspirations, allowing them to lead fulfilling lives, even if they have experienced trauma.
The label ‘behaviours that challenge others’ can be used to justify poor service and support
Because of the variation we found within the research, we suggest that lives that are visibly growing are a measure of excellence – no matter the type of home.
We also found evidence of static or constrained lives, despite us having identified the provision as excellent in the earlier stage of the research. This suggests a disconnect between those who commission services and what happens on the ground.
Our research revealed examples of poor practice, such as being put to bed early and sitting in a day centre room with the television on loud in the corner.
There was sometimes little consideration around supporting people with meaningful activities and uneven support for people to have romantic and other social relationships. These absences point to a lack of support and aspiration and, apart from the residential nursing home and one supported living site, we observed little focus on growing older or end-of-life care planning.
Why did we find poor support when the services had been judged to be excellent?
There is a wider lack of aspiration around people’s lives, which allows staff to drift into doing little, particularly after the pandemic when new staff may think limited activities are the norm.
Commissioners, people and families may have different and competing priorities, and commissioners may lack knowledge about services on the ground.
The question of social work involvement was a further
issue; social workers were significantly absent as contributors to decision-making.
Ensuring staff matched the person’s needs with consistency over time was also raised as a challenge for providers and commissioners.
Paradoxically, family members sometimes accepted poor service and support because they did not want to disrupt a person’s life with a potential move.
As for project conclusions, we identified so much that was lacking:
- A lack of up-to-date and accessible information about what support is available to people and a lack of knowledge about support options and rights
- A lack of social work support to help people move before problems associated with ageing begin
- An associated lack of clarity around who is responsible for coordinating planning for people, which means family carers take this on and older people without family are not supported.
We also found stress and a sense of panic among family carers (part of the rationale for this project) and problematic use of the label “behaviours that challenge others”.
This label is problematic as it can be used to justify poor service and support. This is particularly pressing given the costs of managing “behaviours that challenge others” through bespoke training and programmes.
We need to shift attention from labelling people and behaviours and towards high-quality services and support and solutions that allow people to thrive throughout life.
Many of our recommendations (see panel, left) are simple and easy to implement – or should be implemented already.
The lack of consideration of people growing older leads to a lack of opportunities for people to lead fulfilling and meaningful lives. Active ageing is being denied to this group and this is unacceptable.
Sara Ryan is an activist, author and a professor of social care at Manchester Metropolitan University