Here are some stories which give you an idea of some of our members’ work. If you have a story of your own, please leave it as a comment, or email it to us. Remember to get permission from everyone involved, or change names and other identifying features. Thanks!
The Association for Supported Living (www.a-s-l.org.uk) has published “There Is An Alternative”, a report demonstrating that community-based support for people with learning disabilities is more effective, safer and cheaper than institutional care. The report calls for the government to act to put an end to institutional services. The report includes ten case studies of radically improved outcomes at much reduced cost, including this one:
Following a breakdown in Alan’s family home and then in a residential placement, his behaviour deteriorated and he began to drink heavily, despite the efforts of a number of expensive out-of- area placements. Alan’s care manager approached a local Shared Lives scheme to see if they could arrange a new service for him.
Some health professionals felt that Alan’s support needs could not be met in a family home but potential Shared Lives carers were identified and the matching process commenced. This involved a number of social get-togethers leading to overnight and weekend stays, then a week-long stay, until both Alan and the Shared Lives carers felt the match could work. Alan has now been supported by his Shared Lives carers for six months. Incidents have reduced and he says he is very happy and wants to stay with his carers for the rest of his life.
He has begun accessing community education classes and leisure centres and is also contemplating a work experience placement. The cost to the local authority of Alan’s final residential placement was £57,200 a year, compared with the cost of the Shared Lives placement of £14,223 pa.
Alison, Mark and Neil
Alison and Mark run a pub in a seaside town. Neil, who has a learning disability, spent a lot of time drinking in pubs around the town, and gradually spent more and more time at Alison’s pub. Alison and Mark were concerned about his drinking, his behaviour and increasingly, his safety. He even began sleeping rough on their doorstep. Alison and Mark approached the council and were told about Shared Lives. They put themselves through the recruitment, training and approval procedures and became registered Shared Lives carers.
Neil’s sister recently told Alison that, since Neil moved in with them, he was looking people in the eye for the first time. He takes care of his appearance and has control over his drinking; people say they can now understand his speech. He has achieved long-held ambitions like going to Wembley. Neil says “Now I know what I wanted: what I wanted was a family”. Alison says “His behaviour has changed completely. He brings a whole new dimension to our lives, we get as much pleasure as he does in our ‘family’. We are even thinking of getting out of the pub trade to become full time carers”.
SWAPS Shared Lives service in Devon took a self-referral from a lady with a learning disability who lived with her now ageing mother on a smallholding and wanted to move out of the family home, not least because her mother wasn’t going to be able to support her indefinitely. Her only specification was that she had to be able to take her flock of geese with her. SWAPS like a challenge and were delighted when they were able to match the lady with a Shared Lives carer in a rural family who shared her enthusiasm for geese. It is hard to think of another kind of service other than Shared Lives that would have been able to meet that request in a referral.
Naomi and Jamie – Fife
Fife supported lodgings is a Shared Lives registered scheme which places vulnerable care leavers with Shared Lives carers. co-ordinates the Shared Lives registered Supported Lodgings scheme in fife for care leavers. Naomi became a Shared Lives carer at the scheme at the exceptionally young age of 24 and supported Jamie when he was 16. Jamie is a young adult with a career – currently posted in Afghanistan with the army and Naomi and he still have a very strong bond and speak on the phone regularly.
Tom, Jean and Margaret
Margaret is a Shared Lives carer in Huddersfield. She welcomes older and disabled people into her home for short breaks and to give their carers some respite. She also supports Jean and her husband Tom who has vascular dementia. Tom is a large man and has become immobile and the ground floor of their house has been adapted with a ceiling track hoist and adapted bathroom. Tom has homecare and nursing support. Margaret has been matched with Jean and Tom to provide kinship support and respite for Jean. Margaret helps Jean to take Tom for visits to familiar places in town and to meet friends. Margaret will also sit with Tom at home or stay overnight to give Jean a break. There is an agreement about the amount of care Margaret will offer, but no rigid schedule and the relationship between Margaret, Jean and Tom aims to feel as much as possible like a family relationship.
Jane and Mary were working as personal assistants, supporting people to get out and about in the community instead of going to a traditional day centre. They realised that the people they were supporting really wanted to do things with their friends, so they worked with them to set up a small day service, based in a local community centre. Jane and Mary intend to keep the service small so that everyone involved can continue to plan the week’s activities together and take part in shaping the service around everyone’s interests. Demand for the service is growing, so they are looking at ‘micro franchising’ which should allow them to stay small and satisfy demand from the many people wanting this kind of service.
Jenny and her personal assistant have a passion for dancing. With support, they have established a social enterprise to take dance into the homes of people with a disability to increase their health and wellbeing. Jenny happens to have Down’s Syndrome.
Jenny is currently undertaking training designed for people with a learning disability to develop their skills as dance leaders. DanceSyndrome relies on the strong involvement of Jenny’s family, but Jenny is also seeking the support of a project manager and has 14 other dancers, learning disabled and non-disabled, who are keen to work with her.
Community Catalysts, a new social enterprise wholly owned by NAAPS, has received Department of Health funding to support initiatives like DanceSyndrome. Jenny’s business, ‘DanceSyndrome’, has been publicised to stakeholders and has shared learning and challenges with other small community services at a networking event. It now targets dance workshops at small groups rather than individuals and has identified four groups as potential customers. Jenny was also helped to secure start up funding from local and national funding bodies relevant to her enterprise.
Community Catalysts employs “fixers” who are embedded in the local area to find existing enterprises and offer them the support they need to operate lawfully and sustainably, whilst also helping others to set up. The professional will work with different arms of the local state to ensure that regulatory approaches and commissioning practices are as helpful as possible and avoid stifling enterprise.
Funky Fitness and Fun
Carita (who is also a Shared Lives carer) launched Funky Fitness and Fun in 2007 as a small social care enterprise after realising that the closure of day services had resulted in a lack of activity for some people. The programme of activities is co-designed by the 15 people who use the service and takes place in a community centre. Carita has gained business support from Oldham Collective (a support organisation for social enterprise) and NAAPS. Michael, who sometimes has to use a wheelchair, pays for the service using his personal budget. He found traditional services too rigid and didn’t like the constant changes of staff. He feels Carita’s service is cheaper and better than using a PA, particularly valuing the opportunity to meet old friends and make new ones.
A micro-scale alternative to Meals on Wheels
An ex-school cook in Oldham is being commissioned by the council to provide lunches to elderly residents in her block of flats. This means that there is no need for the Meals on Wheels service which the council used to run, more expensively, and which people did not use anyway. People pay for the meals with their personal budget; the lady has a thriving business; the council saves money; and the service users enjoy their food.
More stories from our work can be found here:
- The Guardian: http://bit.ly/fhHV3L
- The Sunday Telegraph: http://bit.ly/dvYdkZ
- Community Care magazine: http://bit.ly/9I50Ki
- The Social Care Institute for Excellence (video): http://bit.ly/gpUJkM
- Ategi’s video: What is Shared Lives? http://bit.ly/ibySj6
- Users of Shared Lives in Warwickshire have produced four films about their lives: www.youtube.com/user/NewIdeasAdvocacy.
- Shared Lives in East Lothian: www.eastlothian.gov.uk/downloads/Living_east_lothian.pdf