Su Sayer OBE, chief executive of United Response outlines why we must listen to the views of people with learning disabilities, on social care reform.
Historically people with learning disabilities have often been excluded from the political process, with inaccessible information being a real barrier to political engagement. The last general election, however, was something of a watershed, when following successful campaigning by the disability sector all major political parties produced easy read versions of their manifestos and the percentage of people with learning disabilities voting soared.
The move to publish more accessible manifestos is a significant and positive step forward in making politics more open to all. However, there is still a long way to go before the voices of disabled people are heard at every level of Government, as the publication of United Response's 'Our Future' report, earlier this week, shows.
'Our Future' is based on the views and opinions of people with learning disabilities and their families who have spent the last few months discussing what the Government's plans for social care – as laid out in its recent White Paper and Draft Bill - may mean for them. The report reveals that whilst people with learning disabilities and their families feel that some of the proposed reforms would make a big difference to their lives, almost all are concerned about current levels of funding for care, what will happen to their benefits and how their support will be affected as a result.
Many responded positively to certain aspects of the Government's plans, seeing them as an opportunity to fix some of the biggest flaws in the current system, such as improving the transition from children's services to adult services and making it easier to move to another geographical area. Cecily, whose son is supported by United Response, for example, said "transition from child to adult services is often a difficult time and planning ahead seems the only solution. Smooth transition is extremely important and takes a lot of cooperation between different agencies."
However, many expressed concern at the level of support currently available to those with multiple disabilities and to those with mild and moderate needs, and questioned how the needs of these people would be met in the future.
Shairaz said: "I think that people with learning disabilities and mental health needs don't get enough support. You need to look beyond physical appearances. People can be like apples or eggs – they look fine on the surface, but you don't know what's going on underneath".
Perhaps one of the most revealing points to come out of the report, however, was the fact that prior to taking part in 'Our Future', only a third of participants could name in detail any of the Government's proposals. This is despite disabled people and their families being disproportionately affected by any changes to the social care and welfare systems in this country.
In a recent Parliamentary debate on the investigation at Winterbourne View, Care Services Minister, Norman Lamb MP said that "hearing the voice of people with learning disabilities is absolutely central to getting this matter right." A point with which we would wholeheartedly agree.
The social care system in this country is in urgent need of reform. At the moment, too many disabled people are not getting the support that they need and even more are worried that they will lose support. The Government's proposals for change represent a real opportunity to offer disabled people a more secure future, but this can only happen if the system is better funded and people with disabilities are fully involved in the process. Without input from the people most affected, any changes made to the social care system will not be effective. As Our Future shows, people with learning disabilities, in particular, are keen to make their voices heard, but it is up to all of us to make sure that we listen.