Provides an overview of the two following articles which discuss aspects of life for adults with Down syndrome. It highlights the importance of independent living skills, both at home and at work, for self-esteem and self-identity. Buckley, S. Down Syndrome News and Update , 2 2 , The next two articles discuss aspects of life for adults with Down syndrome. The first, Meg's story, has been written by Meg's sister, Ann, and describes how Meg and the family coped after their mother's death.
Two important themes come out in this story - the way in which Meg, at the age of 48 years, took more charge of her own life and developed new confidence and independence after her mother's death and the issues for brothers and sisters of adults with Down syndrome. Meg's mother had assumed that she would live with one of her sisters after her death and they were happy to arrange this but, in fact, Meg stayed in the family home as it became clear that, with support, this would be possible.
While many adults with Down syndrome do move to independent living facilities before their parents die, more do not - they continue to live with parents because everyone feels this gives them the best quality of life or because a suitable alternative does not exist.
Meg's story may encourage families to plan for their family member with Down syndrome to stay in the family home, if suitable support can be organised. This could be on the lines of Meg's example - carers living in the house, or it could be achieved by inviting other adults with learning disabilities to share the accommodation, again with appropriate support available to them. In the UK national charities such as Mencap have schemes to enable this to happen but there is an issue about ownership of property to be considered, as schemes such as this may require the property to be transferred to the charity.
Meg's story reminded me of another story shared with me by a family member recently. After the death of her parents, she felt that she should take her brother with Down syndrome, a gentleman in his forties, into her home. Instead, she found him a place in a residential care facility but felt extremely anxious and guilty about this decision.
