A series of guides that explain the rights of individuals with a learning disability and behaviour that challenges – with a focus on those who are stuck in or at risk of being sent to assessment and treatment units – has been launched by a coalition of charities, family members and solicitors.
Mencap, the Challenging Behaviour Foundation, Respond, CHANGE, family members and Irwin Mitchell Solicitors have produced the guides in response to the fact that many people with a learning disability and behaviour that challenges remain in inpatient units, often far away from families, and sometimes for many years.
The Winterbourne View scandal in 2011 put the spotlight on this issue but to date there has been little change in the number of people who are resident in such places, despite government initiatives designed to address the problem in the years since.
These guides explain everything from what challenging behaviour means and what good support looks like to the rights of people when in a unit and how to plan a successful discharge back to the community. They include top tips, key points to be focused on and signposting to useful resources.
The resources have been funded by the Department of Health’s Strategic Partners Programme. The guides which include Easy Read versions can be found at: www.mencap.org.uk/meetingthechallenge
In a joint statement, Jan Tregelles (pictured), CEO of Mencap; Vivien Cooper, CEO of the Challenging Behaviour Foundation and Noelle Blackman, CEO of Respond, said: “Many families struggle to get the right support for their loved ones with a learning disability and behaviour that challenges.
“Having key information about their rights is crucial. Unfortunately we know there is a power imbalance in the system and equipping families to know their rights and to be able to challenge decisions is crucial.
“We hope these resources can empower individuals and families to get the support they need in the community and help address the fact that too many people are in inpatient settings like assessment and treatment units.”
Emma Austin-Garrod, whose brother Ben was at Winterbourne View, welcomed the launch of the guides: “There is no manual for the complexities of life with a family member with a learning disability and behaviour that challenges. Inevitably families approach the same complicated system in a number of ways. I hope this resource proves to be of use to families in a variety of situations and allows them to ‘meet the challenge’ with the backing of appropriate knowledge and a true sense that they are not alone.”
Alex Rook, a specialist health and welfare lawyer at Irwin Mitchell, added: “Challenging behaviour and learning disabilities are often misunderstood and it is important to have a clear picture of your legal rights so that you can receive the help and support you or your loved one may need.
“There may also be times when you disagree with professionals in regards to what is best for the person displaying challenging behaviour. It is important families have clear information about how to challenge decisions.
“The ‘Meeting the Challenge’ guides are an invaluable resource for families and people with a learning disability to know their rights, and to help signpost people in the direction of the right expert advice, where needed.”
