Mrs X has multiple sclerosis and a 13-year-old son, Y. Y has Down’s syndrome and Oppositional Defiant Disorder/ Conduct Disorder. He has a long history of self-harming and violent attacks on his family. The family had been receiving very limited respite care, but there had been no attempt to implement a behaviour management programme for Y despite repeated requests. As a result, Y had not been out of the family home for the whole of the summer break. Mrs X was extremely concerned that Y was going to seriously harm himself or a member of the family.
The Down’s Syndrome Association wrote to the Head of Children’s Services citing the Human Rights Act, Article 8, the right to respect for private and family life. We argued that participation in public life is a human right. Unreasonable barriers to accessing essential economic, social, cultural and recreational activities can be challenged – in this case the lack of support to manage Y’s behaviour. We also argued that this applied to Mrs X too as she was unable to participate in the life of the community.
Within two weeks Y’s respite care was increased, he was referred to the local behaviour team for assessment and support and his parents were offered the opportunity to receive training on safe methods of restraint and behaviour management.
About Down’s Syndrome Association
The Down’s Syndrome Association aims to help people with Down's syndrome to live full and rewarding lives. The DSA uses the Human Rights Act to empower people with Down's syndrome, parents and carers to obtain better services from their local councils.
For further information visit Read a copy of our guide You are human.



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