Responding to publication of the Government’s "No voice unheard, no right ignored" paper, published on Friday, United Response’s interim chief executive Shan Nicholas said:

“There is much to be welcomed in Norman Lamb’s paper. For too long, decisions about the care of people with high levels of challenging behaviour have been taken out of the hands of individuals and their family members and, as a result, we have seen people left languishing in long stay institutions and subject to shocking treatment, like that seen at Winterbourne View care home.

“The suggestions in the paper could finally give people a say over the care they receive and where they receive it, with families and individuals being consulted on whether or not a person is admitted to an Assessment and Treatment Unit, and a care plan being put in place to ensure that anyone admitted is moved on to a more appropriate care setting within a specified amount of time.

“The recognition of an individual’s right to be part of their community, and to receive care in a community setting close to family and friends, is also welcome. Social isolation is a huge issue for many disabled people and particularly those with profound disabilities; a situation that is being compounded by people being sent miles away from loved ones to receive long-term care in hospital-like settings, away from the comforts and familiarity of home.

“Friday’s paper sets out to assure that children and young people with a learning disability and/or autism will not have to enter inpatient settings in the way that many adults have, which we strongly support. However, we remain concerned about the time that it will take for any of the recommendations in this paper to actually be made into law, and what will happen, in the meantime, to the thousands of adults with learning disabilities and/or autism who are left living out their daily lives in these hospital settings.

“With an election just two months away, this paper is published at a time of great uncertainty. The paper states that it will be up to the next Government to decide what happens as a result of this consultation in context of a spending review. Surely an issue as important as this must not be left to political chance. Families must be assured that this matter will receive cross-party support and that legislation will be brought forward, as a matter of urgency, by whoever forms the next Government. Too many deadlines have already been missed. We must not allow that to happen again by expecting families to wait several more years before their family members receive the high-quality care, close to home, that they deserve.

“We urge all parties to listen to what families have to tell them through this consultation process and to take urgent action on this issue.”

Sarah Bartlett, head of press & appeals.