NIHR129491: Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and supporting end of life care planning for carers.
This study, known for short as “Growing Older- Planning Ahead” (GOPA) is funded by National Institute for Health Research (NIHR). This study is concerned with evaluating what support is available for older people with learning disabilities with behaviours that challenge others, and their family carers in England. The Principal Investigators are Professor Sara Ryan (Manchester Metropolitan University) and Professor Louise Wallace (The Open University).
Professor Louise Wallace said:
“We aimed to find out what works best when health and social care services support people to live at home, in supported living or residential care, to ensure that they can make the decisions that best suits them. We aim to produce new learning materials for families and professionals so they can be prepared for these challenges.”
Professor Wallace lead a study within the overall project concerned with identifying good practice exemplars in services and support interventions. Here we discuss how we defined the things we were looking at (definitions), how the researchers identified exemplars (what methods they used), what they found (headline findings) and what will happen next (future plans).
In defining older people with learning disabilities with behaviours that challenge others, the GOPA team had to identify who they meant by ‘older people’ and what was meant by people with ‘behaviour that challenges others’. They also defined what was meant by services and support.
The study has included people with learning disabilities aged 40 and older. This was chosen to include people who may become frail, or disabled through additional conditions such as neurological, cardiovascular, respiratory and gastrointestinal disorders, that are more prevalent and occur at an earlier age than in people without learning disabilities.
We know diagnostic overshadowing can contribute to these conditions being misdiagnosed or being diagnosed late . This is when medical professionals overlook symptoms of mental or physical ill-health and attribute them to someone’s learning disability. Therefore, the study includes a focus on how services plan, anticipate and are proactive about assessing the health needs of people they support, and how they manage transitions between services and into end of life care services.
Becoming 40 plus years old is relevant to those who live with and/or are supported by family carers, who themselves are ageing and having to face their own personal health needs. The occurrence of additional health needs in people with learning disabilities can sometimes be a trigger for behaviours that challenge others. These may be more likely to occur as a person becomes older, often as family members capacity to care is reduced.
People with learning disabilities aged 40 plus who are being discharged from institutional care, are likely to include individuals who have spent many years in institutional living. There are likely to have behaviours that challenge others and are likely to require high levels of on-going, personalised service support to live in the community.
Behaviours that challenge others is a highly contested term. The definition the researchers used in WP2 is taken from a NICE Guideline  that focuses on:
“Behaviour of such an intensity, frequency or duration that the physical safety of the person, or others around them, is likely to be placed in serious jeopardy”.
The Guideline highlights the importance of service context:
“It also includes behaviour that is likely to severely limit or deny access to and use of ordinary community facilities”.
Services are defined as those that support people to live in the community. This includes services that support people to live in their family home, accommodation with a tenancy and various types of paid support from support providers. Services also included Shared Lives or adult placement, residential care homes (with or without nursing care) and supported living. Health services (primary, secondary and tertiary care) and end of life care services were also included.
This research excluded in-patient specialist Learning Disability units including forensic and prison services because discharge raises many other issues.
What did the researchers do?
The aim of this work package was to conduct a scoping exercise and identify what was the range of service provision available to support older people with learning disabilities in England. This in turn was used, alongside gathering information through interviews and via social media, to produce criteria for the selection of exemplar services for researchers to take a closer look at in the next stage of the research.
In order to develop criteria of exemplar services the researchers looked at grey literature identified in an earlier part of the study, alongside selected published standards and guidance (NICE, Care Quality Commission-CQC standards, NHS England and related third sector body standards). These were considered alongside input from the study Advisory Group and views of key stakeholders.
It was felt that no existing standards in use by commissioners and providers were sufficient in themselves to be criteria of excellence for the purposes of this research, therefore the approach to defining excellence developed through the data collection activity with a range of stakeholders.
While the criteria were developed, the researchers engaged in a mapping exercise to identify services that met these developing criteria of excellence. Data was collected from a number of places, and included the use of one to one interviews, an online survey shared via social media promoted by Care Management Matters , a We Learning Disability Nurses webchat, and CQC ratings of “excellent”.
The researchers developed a template for coding the information they collected. Data from the interviews, documents and web sources were used to complete the key factual characteristics of the service or the scope of the commissioner responsibilities for the service.
The criteria of excellence and shortlist of services from the mapping exercise were discussed with the study’s Public Involvement group with people with lived experience and organisations involving people with learning disabilities and their families, and the Project Advisory Group of professionals and leaders of care organisations and commissioners.
The final criteria used to identify excellence in service models are as follows. They are presented in alphabetical, not priority order, and not all are relevant for each type of service.
Criteria of exemplar services
Commissioner endorsement of provider quality and resilience demonstrated by low placement breakdown
Commissioners are planning ahead with providers and individuals and families around the client group and building capacity for future services
Communication methods are inclusive as used by provider staff and others
Engagement and inclusion in community and friendships
Family involvement in choices about provision as well as in daily life services respect rights of person to autonomy and to a family life if they wish it
Good practices embedded as routine such as in EOLC planning, dementia assessment and management
Healthcare is proactive, preventive, primary care, and involvement of NHS multidisciplinary teams
Matching placement to person care staff organised and selected for that person’s needs
Personalisation assessment, goals, daily plans and activities, are shared and updated
Personalised living space and choices of whom this is shared with
Services to prevent and support behaviours that challenge are trauma informed
Staff Recruitment ; Staff are recruited with the values and skills matched to the person
Staff retention ; Staff retention is high to give continuity of care and experience sharing with significant decision-makers
Two groups of older people with behaviour that challenges others
Learning disability services are not organised around age criteria (except for generic older people’s nursing or social care) within adult services. Services that are designed for people with learning disabilities with behaviours that challenge others, are often focussed on autistic people and younger people. The mapping exercise identified two groups for whom services are commissioned differently. These are described as Group A and B.
Group A consisted of those who are growing older because they are now living into older age, although they may have greater physical and mental health needs than others at an earlier age and may develop behaviours that challenge others due to physical conditions becoming worse or emerging such as early dementia.
This is a large group, with several hundred people in each Clinical Commissioning Group (CCG) or local authority area.
Group B comprises of people who have in their recent past, or are about to be, discharged from long term in patient care, sometimes known as the ‘Transforming Care’ group.
Group B is a much smaller group. NHS England provided data showing that in 15 CCGs up to five people aged 40 plus were discharged to the community between 1 April 2016 and 30 September 2020, all of whom had a continuous length of stay of five or more years at discharge. A further nine CCGs had up to ten people, and two CCGs had up to 15 people discharged in the same period, others had no people in this group.
The figures for Group B in each CCG may be larger but are not quantified because there are also those who have already been discharged some years ago and are living in services in the community, and whose behaviour may or may not still be considered to be challenging others, depending upon how services are successfully meeting their needs.
This group are especially relevant to this study as despite strong evidence of the improvements in quality of life associated with “deinstitutionalisation”, fulfilling this long-standing policy in England remains a challenge.
Four broad types of exemplar provision
The mapping exercise, and the criteria that were developed, led to the identification of four broad types of exemplar service provision. These were as follows:
- support provided by families themselves on their own, or with paid day care and domiciliary services (including for personal health and care needs, and for social and employment purposes) for those living in their own or the family home
- supported living via a tenancy arrangement for accommodation and care provided in a personalised care package. A variant of this involves Home Ownership for people with long term Disabilities (HOLD) which provides shared ownership (where the housing association buys the property and sells 25-75% of the equity back to the person or family) and charges a rent for the remainder and other services.
- Shared Lives provision, sometimes known as adult placements, with paid care provided by an approved family in their home. This can be for respite/a family break, a step towards independent living or long-term living.
- residential care in a care home (with or without nursing care) or supported living in a shared facility with care provided by a team employed by the care provider for all residents living in the same accommodation which may be owned by the care provider or a housing association. Care provided in nursing-led care homes for people with various disabilities has also been described.
Further research by the team is now using the results from this work to look in more detail at the best examples in England of care and support provided to older people with learning disabilities and behaviour that challenges others in Groups A (wider group of older people aged 40 plus) and B (smaller group of people placed in the community after significant time in in-patient care often located far from their family).
The focus will be on providers, families and people with learning disabilities, health and care services in the community. In each case study the approach to commissioning would be included.
We look forward to providing you with more information and further results as we have them.
To find out more about the team and what we are doing visit:
 Ali A, Hassiotis A. Illness in people with intellectual disabilities. BMJ 2008:336:0-D.
 Mason, J., and Scior K. (2004) `Diagnostic Overshadowing’ Amongst Clinicians Working with People with Intellectual Disabilities in the UK. Journal of Applied Research in Intellectual Disabilities 2004, IU, 85-90
 National Institute for Health and Care Excellence. Learning disabilities and behaviour that challenges: service design and delivery. NG93, 20
This blog describes independent research funded by the National Institute for Health Research (NIHR) under its Health Services and Delivery Research Programme (NIHR129491). The views expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.