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9 Jul 2012
Steve Scown, chief executive of VODG member Dimensions

Nobody should have to struggle to get control over their own life

“Nobody should have to struggle to get control over their own life,” says 49-year-old Ann McCallum.

steve scownAnn, who has cerebral palsy and is supported by Dimensions, was among a group of people who recently launched their own social care charter hoping to improve the lives of people with learning disabilities and autism. Ann edits a local newsletter in her home town of Dover in Kent, Our Voice, and sits on Dimensions national council a forum for speaking up about improvements to support for people with learning disabilities. She said before the recent launch at the House of Commons: “I get angry when people talk to my supporter as if I’m not there…I want as many people as possible to back our charter so that more people can live as they choose.”

The charter, which we hope as many MPs and members of the public will sign, sets out what Ann and her peers feel they need in order to live the life they want. In a nutshell (see box below, “Dimensions’ social care charter”, for full details) it calls for individuals to have more choice and control over their money and how it is used, a say in where they live and who they live with and an involvement in the recruitment of support staff.

The charter was developed to underline the fundamental right for people to be involved in decisions that affect their support and quality of life. The aim is to get the commitment of MPs – it was presented to MPs on June 26 - to ensure the five pledges are enshrined in future social care reforms. We want to make sure that the forthcoming social care white paper does not ignore the needs of people with learning disabilities and autism.

The Dimensions social care charter group at the House of Commons in June

The launch of our charter is timely. Not only is there wide variation across the country in how budgets and support are provided (what’s the point giving someone a personal budget if they then don’t have real choice about their lives?), but many councils still offer old-fashioned “we know best” services. In addition, the ADASS personal budget survey(PDF on external website, size not known) revealed that only one in three people have control of their money, despite government policy dictating that those eligible have a personal budget by 2013. And the recent DH interim report into Winterboure View and the CQC’s latest findings both underline the need for the voices of people with learning disabilities are head.

Dimensions’ social care charter

The charter’s vision is for all people to have the right to live, work, and participate in the community in the way they choose, free from bureaucracy, barriers and bullying. The charter targets five key priorities aimed at turning this vision of person-centred support into a reality:

  • I want choice and control over my money: Everyone should have a personal budget and all local authorities should ensure personalised support - “one size does not fit all”.
  • I want greater independence: People should have a say in where they live, the right to work and training, and access to learning and development.
  • I want to be part of my community: Environments should be more accessible; and large employers and public sector and healthcare services should be trained on autism and learning disabilities.
  • I want a voice and to be listened to: People should have a right to vote, participate in politics and public service, contribute to consultations and inform decisions that will impact their lives.
  • I want control and choice over my relationships: Everyone should be able to choose who provides day-to-day support, how and when it is delivered, and who they live with.

Ann was among the five people from Dimensions’ national council, which is made up of  19 council members who are supported by Dimensions, to participate in the parliamentary meeting. The council members represent their regional Everybody Counts groups, which provide a forum for people supported by Dimensions at a regional level to have a voice and helped draw up the charter. The process began around three months ago, with groups of people discussing what mattered to them. Over the next few months, as the main issues emerged, ideas were shared between the different groups to make sure the final five-point charter reflected everyone’s concerns.

The charter’s launch was led by the people who drew it up. Each of them, including Ann, talked about one of the five pledges (see box right, “Dimensions’ social care charter”, for full details) using their own experience to explain why choice and control is so vital to them. Their personal stories included the importance of being able to choose where to go on holiday, the need to be involved in community life and the benefit of enjoying the same relationships as everyone else.

Read the pledges and you can see how the charter isn’t a demand for more funding or for a radical policy overhaul, but a change in how we think about and treat someone with a learning disability. For that reason, the initial feedback on the day of the launch from MPs was really positive, particularly when they realised that the charter asked for simple things, like being able to chose who supports you.

Now we want as many signatures as possible, from MPs, the public and from our fellow VODG members. Do lend your support; every day at Dimensions we see the real difference a personal approach can make to people’s lives but the charter is a reminder that we still need widespread change in culture and attitudes to care.

Watch Video - Making it personal: Social Care Charter

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