A new resource has been launched to help parents of adult children with learning disabilities who feel that they are not being appropriately consulted about the welfare of their loved ones. Learning disability charities Ambitious about Autism, Mencap and the Challenging Behaviour Foundation worked with Irwin Mitchell Solicitors to develop the tool, following concerns that many professionals fail to appropriately consult with families, as required under the Mental Capacity Act 2005. In its latest report into deaths of people with a learning disability in NHS care, ’74 lives and counting’, Mencap found that many health professionals fail to abide by the Act and ignore advice from families. The resource will support parents who have concerns that they are being excluded from decisions that social care or health professionals are making about their adult son or daughter. These may be decisions about where the person lives, what care they are getting, how they spend their time or medical treatment. Alex Rook, a solicitor at Irwin Mitchell, explained that if an individual lacks the mental capacity to make a decision for themselves that decision must then be made in their best interests in accordance with the requirements of the Act. “The Act requires all professionals, including those from local authorities and the NHS, to consult with family members when an adult lacks the mental capacity to make the relevant decision themselves. The law on this is clear. We want families to know their rights.” Vivian Cooper, chair of the Challenging Behaviour Foundation, said that family carers who contact the foundation’s helpline often feel excluded from decision-making. “Families have a wealth of knowledge and expertise about the individual and their history as well as being a long-term source of love, care and support. These new resources will empower families to ensure they are appropriately involved in the decision-making process.” David Congdon, head of campaigns and policy at Mencap, said: “We know from our campaigning work how serious the consequences can be when families of people with severe learning disabilities are not listened to. They often have invaluable knowledge about their son or daughter, for example, they understand the subtle ways in which they communicate or express that they are in pain. “It is crucial that professionals listen to family carers and use their knowledge to inform decisions being made. This applies to all decisions – those about medical treatment and social care as well as any other decision which affects the person’s life. This is not just good practice it is the law. It is important families understand this and feel able to challenge when they are not being involved.” The leaflet can be downloaded here: www.irwinmitchell.com/MCAletter
