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23 Nov 2011
Bill Mumford, chairman VODG, managing director, MacIntyre

Another Way: powerful new report from VODG

Lucy (not her real name) wanted the same freedom of choice as her siblings, both of whom had moved away from the family home in the North East to study. But until two years ago, there was little to suggest that Lucy, who is profoundly deaf, has cerebral palsy and no discernible speech, would realise her ambition. Lucy lacked confidence and her mother, who acted as her full-time carer, was very protective of her daughter.

bill mumfordYet today Lucy, 24, lives in supported housing near her mother. She is studying an independent living skills course and hopes to do some supported volunteering at the end of her course next summer.

Her burgeoning independence is thanks to the flexible support offered by Deafblind UK, the national charity for people with a combined sight and hearing loss. The charity, a member of the VODG, supports Lucy with a combination of personalisation – giving more choice and control to the individual – and co-production, where service users collaborate on the design of their service.

Lucy’s journey towards appropriate social care is just one of several powerful stories published in a new report that we publish today, Another Way: transforming people’s lives through good practice in social care (PDF 616Kb). Personalisation and co-production puts the individual at the heart of their own careThe report is a response to the Winterbourne View scandal earlier this year that exposed the abuse of people with complex learning disabilities at a care unit in Bristol. Today’s publication was developed after a Guardian roundtable event held in association with the VODG earlier this year after the Winterbourne View scandal. The roundtable’s intention was not to look for blame, or simply to respond to the Panorama programme, but to better understand the precursors of successful and empowering support.

Another Way tells the human stories of success in social care through a series of interviews with families and care providers. It describes the key elements for care providers to focus on if they are to create high quality, cost-effective support. It includes stories from care providers and VODG members including my own organisation MacIntyre, Affinity Trust, DeafblindUK and National Autistic Society.

The report also reflects the national care policy drives towards personalisation and co-production which, taken together, entail more control and choice for individuals and a collaborative approach between service users and providers.

As Gavin Harding, who co-chairs the National Forum for People with Learning Disabilities and chairs self-help advocacy group Voices for People, writes in today’s report: “The abuse at Winterbourne View was extreme but you have to remember that even in services where the care support is generally good, the views of people who are cared for might still be ignored. Too often, vulnerable people are sidelined… There is another way, which is presented in this report. It’s about putting people with learning disabilities and their families at the centre of planning and delivery of care.”

Such sentiments are echoed by Vivien Cooper, founder of the campaign and support organisation the Challenging Behaviour Foundation (CBF), who states in Another Way that it is “crucial” for providers to engage with families (Cooper set up the foundation after struggling to find appropriate support for her son, who has a severe learning disability): “For many people with learning disabilities, a number of people come into their lives at various points and can be very important to them but they often fulfil this role for short periods, whereas families are the constant. Even if the person leaves the family home, they do not leave the family and families can be engaged and provide input in various ways.”

The stories in today’s report include the moving case of a parent who felt powerless when his son was placed short-term in Winterbourne View three years ago. The case, as he says himself shows how “people with learning disabilities should be put at the heart of their own care and their families shouldn’t be out on a limb”

The key themes that emerge in Another Way include:

  • Putting people and families at the centre with co-production and personalisation
  • Working together and leadership for commissioners and providers
  • Integrated solutions, such as pooled budgets
  • Planning, for example, in tailor-made transition plans
  • Networking and promoting good practice within the sector
  • Positive behavioural support approaches which focus on the individual and on the triggers of challenging behavior, not just on preventing such behaviour

As illustrated in the case of Lucy, whose uplifting story I started this post with, enabling people to shape own care can be a transformative experience for commissioners and providers, as well as for individuals. Just ask Lucy’s mother, who recently described the change in her daughter’s situation as “miraculous”.  With the right support around her, Lucy’s independence has grown and, as DeafblindUK explain in today’s report “she sees herself as equal to her siblings and peers, which is what she’s always wanted.”

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