Life stories and life journey maps can enable people to stay close to home. Making local support happen – even in crisis – means people can remain in their communities. Sue Ledger and Lindy Shufflebotham tell three stories of making local support work
Making local support happen for all who need it is a long-standing aspiration for people with learning disabilities and their friends and families.
Reliance on out-of-area provision leaves people cut off from others and increasingly vulnerable to abuse, as vividly exemplified in the recent Panorama report on Whorlton Hall.
This is the last in a series of three articles. The previous two looked at how life stories and life journey maps can enable people, including those with high support needs, to stay close to home (see box) (Ledger, 2019; Ledger and Shufflebotham, 2019). This final article recounts three stories from the project; they are about people who found themselves in crisis and were able to remain in their local area rather than being placed far from home.
Stephan: staying in his home
Stephan is a sociable man who loves train travel and conversation. He has complex health and mobility needs and requires 24-hour health and social care support.
Iglika, his older sister, had been his sole carer since the death of their parents. They were very close and saw their long-term future together. They had lived in rented homes at various addresses in the same street, Peel Crescent, over many years.
While Iglika was at work, Stephan went to Oseney House, which provides short break services. Over several years, a pattern of regular, trusted support built up.
Sadly, when Stephan was 45, his sister was diagnosed with a terminal illness. They informed David, the Oseney House service manager, who met with both of them to ask how he could help. They agreed a plan of support.
Stephan recalls how he and his sister came to rely on the staff at Oseney House as her illness progressed: ‘I went more [to Oseney House] so Iglika could rest. David said he would make sure that I didn’t have to leave Peel Crescent. He came to see us and sorted out for me to have the flat.
‘Oseney House staff helped Iglika when she started to forget things.’
As Iglika’s health deteriorated, the short breaks team helped her to continue for as long as possible in her caring role.
When she became so unwell that Stephan could no longer remain in their home, the short break service swiftly responded to provide full-time care.
David says: ‘I remember Iglika rang and said she was being admitted to hospital that day. She was so worried about Stephan. I said leave it with me and we will pick him up from the day centre.
‘In my head I thought: ‘What am I going to do?’ We have no spaces but I knew we had to respond. Having built up relationships with carers, I rang the father of a person who was due to come in for a planned stay and explained [the situation]. He was fine.
‘I think I encouraged people to see that it might be them needing that kind of flexibility sometime. It took a lot of juggling but we got there in the end.’
After Iglika’s death, David worked with local agencies to support Stephan to succeed to his sister’s tenancy and arranged adaptations to the home. Stephan returned to his home with 24-hour support.
David explains his thinking: ‘Stephan and Iglika were a unit. The way I saw it, it would have been artificial to split up their support. By supporting Iglika to carry on at home, we were supporting him too.
‘In the same way, I saw it as our role to make sure he kept his tenancy. We worked with a local supported living service to enable him to move back to his home when his sister was no longer there.’
In 2018, Stephan was still at the same address, attending church and clubs.
Billy: complex needs
‘Billy should have the chance to try out going home – the last thing he needed was an out-of-area challenging behaviour service in a new place with more new people,’ a senior local authority manager told the Staying Local project.
Billy came to the attention of social services when his mother died suddenly. He was admitted on an emergency basis to Oseney House.
He had no surviving family nor circle of support. He had shared a housing association flat with his mother who had had minimal contact with services. Billy was blind and did not use words. No local service had a vacancy able to support Billy. Twelve months later, he was still living in the short breaks service while the local authority tried to find
a placement.
Christine, a challenging behaviour specialist, recounts the complexity of Billy’s needs: ‘He had suffered a terrible loss. He was still distressed, and the environment was very hard for him at Oseney House. People were always coming and going. He was blind and clearly unsettled.
‘His behaviour was getting worse and causing problems. Other people using short breaks service were at risk as Billy was hitting out and pushing. Sometimes they would try to hit back.
‘Staff intervened frequently and 3:1 staffing was introduced to keep Billy and others safe.’
Ralph, a senior clinician, recalls the turning point in Billy’s story: ‘Billy would have gone out of area. His case came to the attention of a senior manager who questioned why he had been living at Oseney House for so long.
‘There was much concern about his aggressive behaviour. I think people just thought it wasn’t realistic for him to go home or that the 3:1 staffing he needed would be too costly.
‘This manager had previous experience of supported living for people with complex needs. He set up a planning meeting for Billy, co-chaired by Stephan [whose story appears above], a person with learning disabilities with high support needs who already held his own tenancy and was a member of the local learning disability partnership board. Stephan was supported by the head of the group at the meeting.
‘Also at the meeting was an independent advocate for Billy, the local authority day services manager, the community team manager, the learning disability commissioner and Oseney House staff.
‘Together, they went through the budget and came up with a plan that allowed each agency to contribute what they could to make the plan more cost effective; this made providing support at home affordable to the council. Billy was supported to return home for a four-month trial with the recommended staffing. These staffing levels were reduced after a short period.’
Sixteen years later, Billy is still in his own flat. He has 1:1 support; 3:1 support was not needed after this transition. He enjoys cooking and has joined a local cafe project. He gardens, plays drums and is a member of a local choir.
Sally: a safe, permanent home
For some people, local solutions did not involve short break services. Sally’s story shows how active commissioning enabled her to remain in her area, despite having very severe epilepsy as well as learning disabilities.
Sally has lived in the area all her life and has close family who live nearby and are in regular contact.
She has a genetic syndrome, mobility difficulties and severe epilepsy. She can experience as many as 20 seizures a day and has experienced numerous falls and fractures.
Her brother describes the prompt action taken in response to the rapid deterioration in his sister’s mobility as a result of epilepsy: ‘Jo, the social worker, was onto it straight away.
‘She was worried about Sally having further falls and knew she needed somewhere with no stairs and 24-hour care.
‘She worked with the local housing associations asking for help in finding a flat for Sally very near the group home where she was living, so she could keep daily contact with her friends and her family.
‘She met with us to keep us in the picture and we all tried to help. Within a year, a new flat had been organised round the corner. Sally loves it – it is all level access and there is a garden too.’
Sally says: ‘Jo knew me long time.
She came to see me at [the group home]. She knew my sister and my brother.
She came to hospital when I hurt myself – neck here [points], when I fell downstairs.
‘Jo and Francis [the housing manager] found me my flat. Lovely, no stairs. Near my best mate Tony. My brother and sister. My favourite place to be.’
Sally is still in her home 17 years later.
Local solutions to crisis
These detailed accounts provided by people with learning disabilities and other under-researched groups,
including families, frontline staff and managers, provide insight into how crisis periods in people’s lives were resolved locally.
The stories show how, when difficult situations arose, support was provided by skilled, committed staff, working closely and sensitively with people with learning disabilities and their families. Often this involved crossing multiple service boundaries to develop creative interim followed by long-term, local solutions.
All names, dates and places have been changed to protect confidentiality.
References
Ledger S (2019) Stories show the way to stay home. Community Living. 32(3): 12-13
Ledger S, Shufflebotham L (2019) We were here: sharing stories of local support. Community Living. 32(4): 16-17
BBC (2019) Panorama. Undercover Hospital Abuse Scandal. http://tinyurl.com/y3gloo4d
