Report 55: People not processes: the future of personalisation and independent living
Experiences of personalisation
Service user perspectives
Once I received a direct payment my whole world opened up. I became a qualified disability awareness training consultant, I travelled extensively in the four nations and worked for 31 of the London boroughs delivering their training.Ann MacFarlane
Ann MacFarlane gave an account of her life and journey to personalised support. She spent much of her childhood and youth in hospitals and residential institutions which were very impersonal. While she had few opportunities for education, she taught herself typing and shorthand note taking and this opened up employment opportunities to her, although employers’ attitudes made this very difficult. Ann first had personal assistants in 1988 and this enabled her to work as a consultant and become active in her local community and the disability movement.
Angela Simpson described how she had lived in a care home with shared bathrooms and staff who were neglectful or abusive. She now lives in the community and receives support from Keyring Network (see below) and is able to pursue her interests in sport, photography, arts and craft and campaigning on social justice issues.
Mark Johnson is also part of Keyring. He had lived in very difficult circumstances and was very unhappy but now has his own place to live and a network of supporters. He works on community safety issues and with local churches to increase the participation and provide safe meeting space for people with learning difficulties in churches.
Odi Oqusa, chair of the Catch-a-Fiya black and minority ethnic (BME) mental health user and carer network, was one of the opening speakers on the first day of the seminar. He quoted examples where people had been given information on personalisation but had not been able to use it as it was not in their language, and another where a person had been given a personal budget but had not been able to recruit anyone. He also referred to a positive example where a mother described her son having a new of life after moving on to a personal budget, although even here there were difficulties with the amount of paperwork involved in the budget.
Direct payments gave us a whole new lease of life – we became in control of our service.
Sally Percival described the services her family first received to give them a break from caring for their son Alex as causing more stress than they solved. She now manages a direct payment on Alex’ behalf and this allows him to pursue his interest in World War 2 re-enactments without needing support. As a result, Alex is finding the community involved in the re-enactments is becoming increasingly supportive and inclusive.
Sally also cares for her 80-year-old mother, Audrey, who has a physical impairment and dementia. Audrey moved into a residential home at one point but it did not work for her. She now has an individual budget that allows her to live in her own home with support and has choice and control over her life.
Alan Croner spoke about on caring for his 21 year-old daughter Hannah. He was offered respite care from social services by they were unable to identify anyone to provide the service. Alan was able to use direct payments to pay people he knew locally to provide the service. When Alan became a single parent they agreed to provide further support that meant he was able to continue working.
Both Sally and Alan highlighted how having personal budgets benefited them and their families as a whole, particularly in enabling them to give time to their other children.
Charlie Crabtree and Neil Turney gave social care practitioners’ experiences of personalisation as workers with the Keyring Network. They described how flexible approaches were more empowering for service users and how the Network enables service users to support each other. Keyring also supports people to develop links with their communities so they are less isolated and can contribute fully to their areas.
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- SCIE Report 55: People not processes: the future of personalisation and independent living
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