Service users make their voice heard on social care reform

People with learning disabilities and autism call for control over personal finances, greater independence, and inclusion by Steve Scown
We know from the people we support that people with learning disabilities and autism want a voice in the discussions on social reform and an opportunity to improve understanding on what matters most to them. That is why five council members from Dimensions, individuals with learning disabilities and autism elected to represent the wider views of people we support, recently attended parliament to meet MPs and launch a charter which details what they need in order to allow them to live the life they choose.

The new charter from people with learning disabilities and autism calls for:
• Choice and control over their money and how it is used
• A say in where they live and who they live with
• Involvement in the recruitment of who supports them

The charter, which was developed by people we support, contains simple requests such as control over personal finances, greater independence, and inclusion in the local community, things that many of us take for granted but which many people with learning disabilities and autism still do not have the ability to enjoy.

In light of the debates around the social care white paper, it is essential that the needs of people with learning disabilities and autism are not marginalised. This charter could not come at a better time, and must serve as an important reminder to policymakers of the fundamental right for people to be involved in decisions that affect their support and quality of life.

Recent surveys have shown that only one in three people with learning disabilities and autism have control of their money, despite government policy being that all eligible people are supposed to have a personal budget by 2013.

There is wide variation across the country in how budgets and support are provided. A national personal budget survey found fewer than half of people feel their local authority makes it easy for them to choose and change their support. Nearly a quarter of those surveyed reported that their local authorities made the process difficult.

Every day we see the real difference a personal approach can make to people’s lives. Unfortunately, it’s a postcode lottery at the moment. Many councils are offering old-fashioned “we know best” services. This needs to change.

However this isn’t just about money – it’s about the need for a widespread change in culture and attitudes to care. Dimensions is a not-for-profit organisation which has been supporting people with learning disabilities and autism for more than 30 years. We support more than 2,500 people in England and Wales. We have long been championing great personalisation in social care and work hard to ensure that we work with those we support so that they have greater choice and control over their lives.

We have seem remarkable results from this change in approach with people gaining greater independence, participating in work and their community and living outside a traditional residential setting often for the first time in their lives. However, with ongoing government funding pressures, we do not want to see a return to the ‘one size fits all’ approach to social care. The people we support are a testament to the difference a personal approach can make and this can bring savings over the longer term.

Steve Scown is chief executive of Dimensions, a national not-for-profit organisation providing support to people with learning disabilities and autism.