Earlier this year, the Government published its long awaited White Paper on the funding of care and the Draft Care and Support Bill, which set out the direction of reform. 

In a new report published today, people with learning disabilities and their relatives have spoken out on what they think of the reforms and how their lives may be affected.

Our Future is the second project led by United Response’s Campaigns Panel, which is a group of people with learning disabilities and their families who want to make their voices heard on issues which matter to them.  The Panel was set up last year and makes sure that when United Response campaigns for change, it is always based on the views of the people we support.

Download the Our Future report

Over the last few months, members of the Campaigns Panel have been considering some of the Government’s proposed reforms to care and support and what their impact could be.  Mostly the response to the reforms was quite positive as people saw this as an opportunity to change some of the biggest problems with the current system, such as the inconsistencies in care between different local authorities and the difficulties faced by many people when moving from children’s services to adult services.  Denise, who is supported by United Response, said that it is important that people have better support to “plan what they want to do before going into adult services.”


However, Campaigns Panel members identified some gaps in the reforms.  Cecily, whose son is supported by United Response, said that people “who enter adulthood with care and support needs should be eligible for free care and support rather than facing means testing.”  Several people said that it was important for people with mild or moderate disabilities to get more support and that councils need to get better at spotting people’s needs early on and preventing them from reaching a crisis.


The biggest concern for everyone on the Campaigns Panel was about how these reforms will be funded.  Vicky spoke for many people on the Panel when she said that she was most worried about “losing [her] benefits and support.”  Without a long-term solution to the funding of care, it is difficult to see how the Government’s reforms can make a lasting impact.


If the Government is to make a real difference to the lives of disabled people, it must do more to engage with them.  As Cecily told us, one of the ways that the Government can create a better future for disabled people is simply by “listen[ing] more to those with disabilities.”  As the debate around care and support moves forward, the Government must make sure that the views of disabled people are at the heart of any changes.  As Our Future shows, disabled people are keen to make their voices heard.

Download the Our Future report

Rachel Bowen, campaigns officer.