Transforming Care
Stories show the way to stay home
Transforming Care has struggled to ensure people get local support so they can remain in their home area, and many have been moved miles away. Sue Ledger describes how life stories reveal what makes staying put possible – and what puts people at risk of being sent away
People with learning disabilities or autism who have complex needs are continuing to follow a well-trodden path out of their home area to receive services. Often, they do not return.
What is happening to many of these children and adults under the Transforming Care programme can be seen as part of a bigger problem of local support.
A clear gap persists between policy commitment (Department of Health, 2007a) to support all people to remain in their local authority district if they wish to do so and a continued reliance on out-of-area services.
Making local support a reality for all who need it is a longstanding problem. Many people continue to receive support at a considerable distance from their home area but are not moving away through choice.
The most commonly cited reason for making placements at a distance is a lack of local specialist provision, with these arrangements often made in response to a crisis when local support breaks down.
Yet many people, including those with complex disabilities, do remain in their communities.
Although much research has been undertaken on community-based care, there are few accounts of local support told by people with learning disabilities to guide practice. Life stories from people with high support needs, who are at the greatest risk of being place out of area, are noticeably absent.
Atkinson and Walmsley (2010) argue that insider accounts from people with learning disabilities and other under-researched groups, such as families and frontline staff, shed light on areas of social care where gaps exist between policy and practice, as is the case with local support.
Working with people with learning disabilities and those closely involved in their support to disclose previously unheard local life stories may increase the understanding of what, in practice, enables people to remain in their community.
My PhD project, Staying Local, set out to explore this possibility (2012). The research for this consisted of three main strands:
NIne men and women with learning disabilities (including five with high support needs) shared life stories using mobile interviews (people are driven around and talk about places they know, and this is filmed), map-making (making a map of their lives in their community) and photovoice (people photograph scenes then discuss what these places mean to them)
Interviews with 36 people closely involved in local support, including families, advocates, frontline staff and managers
Archival research, including into local policy and service documents.
The research analysed the stories of people who lived in their local authority district between 1971 and 2007. A follow-up review was undertaken in 2018 to establish how many people had remained in their home area.
In the densely populated urban setting where the project took place, 46% were placed out of area, 66% of whom had high support needs.
” Hearing local life stories may increase the understanding of what enables people to remain in their community”
Exploring crisis periods
As many people are placed out of area because of a crisis, the project used critical incident analysis to explore crisis or critical periods when people were at risk of such placements.
People with learning disabilities and those in their support circles (mainly friends, family and volunteers) were asked about when things had changed suddenly or been especially difficult. Once the research was under way, identification of critical periods emerged naturally.
Within eight of the nine life stories, there was one period; one story teller, who had complex epilepsy, described two.
Lenny Brown’s brother explained:
‘The worst time for us was the year before mum died, you remember, Len? Lenny and mum were at home and we couldn’t manage to look after both of them.’
Mobile interviews proved particularly helpful in supporting people to share information about critical periods.
Sally ‘had fall. Hurt neck’ [outside former group home – pointed to upper floor of building].
The person, their family or other key informant confirmed a crisis raised the risk of being moved out of an area.
Billy Green lived with his mother. After she died, plans were made for him to move him out of area. He is blind and was described at the time as having ‘very challenging behaviour’.
The manager of a short break service explained:
‘Before the meeting [planning meeting where a local solution was discussed], it seemed as though it simply wasn’t possible for Billy to return to his mother’s house. A decision had been reached that he would be moving out of area on the grounds that nothing affordable and specialist was available locally.’
Green succeeded to the tenancy of his mother’s home and has held it for several years. In 2018, he was still living there.
The nine life stories showed that, in every case, people were able to stay in their area initially because of care provided by families. Many of these families had their own informal support networks of extended family, other parents and friends.
Critical periods were triggered by Illness or the death of a family carer, a sudden increase in support needs (related to behavioural support, or physical or mental health) or the person wanting to leave their family home to gain independence.
Three services for local life
Within each local authority, services evolve differently and this influences the number of people who remain local.
Acknowledging this, the project made a series of maps documenting the growth of local support. These enabled life stories to be cross-referenced to how the infrastructure of services and resources developed.
Life stories highlighted three services that played a key role in enabling people to remain local:
- Short breaks and crisis support
- Family visiting and home support service
- A flexible supported living service providing personalised support teams for individuals in their own homes.
- However, these services alone were insufficient to keep everyone local. Additional factors were:
- Longstanding and trusted relationships between people with learning disabilities, families and staff providing local services
- Staff who worked effectively across boundaries, were confident about supporting people with complex needs and prepared to go the extra mile
- Allies in services who saw the person as ‘belonging locally’ and worked to implement temporary arrangements until a longer-term solution was found
- Staff able to spend time supporting families in addition to the person with learning disabilities
- Effective person-centred leadership from managers who knew the individuals.
- When people experienced critical periods, life stories revealed how staff and services worked closely with families, crossing multiple service boundaries to develop interim and longer-term local solutions. Oral and documentary sources indicated that knowledge of an individual’s local connections played a significant part in motivating staff to work so the person could remain in the area.
- In 2018, eight of the life story tellers had remained local. Support for one person with complex needs was under funding review and their future uncertain. One had moved out of area because their physical health had declined and no local resources could meet their needs.
- The project enabled people with learning disabilities and others closely involved in their support to share detailed accounts of how staying local was made possible in practice.
Webs of support
Life stories showed the value of people with learning disabilities, families and staff working together to build local webs of support that could sustain people, including those with the most complex needs, in a crisis.
Life stories also revealed barriers to belonging that persisted even though people remained local. The knowledge and skills needed to deliver effective local support are increasingly widely available. Life stories recorded through this project contribute to this literature.
Jim Mansell (DH, 2007b) identified that services providing competent local support are successful in a number of ways.
First, they recognise that people need their support to be well coordinated, so they tend to work across organisational boundaries, trying to build packages of care that meet individual needs, rather than matching people to existing services.
Second, they stick with people in spite of the difficulties in meeting their needs.
Finally, packages of care are based on thoroughly knowing the individual and their family.
Findings from the Staying Local project support this.
While it is encouraging that the majority of life story tellers in this project stayed close to home, the fact that some people with learning disabilities are at risk of being placed out of area, not through personal choice but as a result of service responses, is of serious concern.
Investment in the development of local support for all those who want it must be justified. The relates to enabling people to maintain relationships with the people and places that matter most in their lives; it also addresses the ethics of placing children, young people and adults away from their families and familiar environments through no choice of their own.
- Names and places have been changed to protect confidentiality
- Staying Local by Sue Ledger was chosen by representatives of the National Forum of People with Learning Disabilities, National Families Forum and Think Local Act Personal/Association of Directors of Social Services /Local Government Association as an example of good practice to guide national delivery of the Transforming Care Programme.
References and biography
- Atkinson D, Walmsley J (2010) History from the inside: towards an inclusive history of intellectual disability. Scandinavian Journal of Disability Research; 2010; 12(4):273Ð86
- Department of Health (2007a) Valuing People Now: From Progress to Transformation. London: the Stationery Office
- Department of Health (2007b) Services for People With Learning Disabilities and Challenging Behaviour or Mental Health Needs: Revised Edition. Mansell Report. London: DH
- Ledger S (2012) Staying Local: Support for People with Learning Difficulties from inner London 1971-2007. Unpublished PhD thesis: Milton Keynes: Open University
- Lenehan C (2017) These are our Children. London: Council for Disabled Children
- Brown M, James E, Hatton C (2017) A Trade in People. Lancaster: Centre for Disability Research
- National Institute for Health and Care Excellence (2015) Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities whose Behaviour Challenges. London: NICE. www.nice.org.uk/ng11
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