The Power of Deafblind People’s voice

On 1 April, the Care Act came in – the biggest overhaul to the care system for 60 years. It’s been a long journey. Almost exactly five years ago I spent a Saturday with a small group of deafblind people and some lawyers from the Law Commission talking about social care. This was the start of a process which finally came to an end on 1 April when the Care Act came into law.

What I saw on that day was the power of giving a voice to the people directly affected when things don’t work. The deafblind people talked about their own experiences, and they clearly made an impact because the Law Commission report made proposals about specialist assessments for deafblind people. Throughout the intervening five years, Sense has continued to give deafblind people and their families the chance to talk directly to the people who are making the decisions about the Care Act. We haven’t told them what to say, although we’ve helped them understand what the issues are if they’ve wanted that.

At that first meeting lots of people talked about how their assessments didn’t look at social interaction. Now we have a Care Act which starts with a principle of well-being which includes family and personal relationships and participation in recreation and part of the role of social care.

It’s been an amazing experience for me to be involved in the process of law reform from start to finish, talking to officials, MPs, Ministers, other voluntary organisations. But of everything the work has involved, it’s been working alongside deafblind people that has been the best. To sit in a meeting with people who experience the problems in the system first hand, with half a dozen different communication methods and a small army of interpreters. Communication is slow, but so much more powerful than me talking about the issues. And thanks have to go to officials at the Department of Health who not only listened but made people feel listened to and valued.

So what did we achieve? Only time will tell how this will work out in practice, but there are some really positive aspects to the Care Act, including some specifically about deafblindness.

My fear is that without more funding into the social care system, there is a risk the answer might be that we achieved very little. But as we approach a general election, we know that a new Government will very soon be faced with making the tough decisions about social care funding. And I know a number of deafblind people who will be letting them know exactly what is needed.

For more information about your rights under the Care Act, see the Sense website.

Sense also has a practical guide to the Care Act and deafblind services for local authorities.

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