Damien Douglas of Lucan, Co. Dublin, has cared for his twin girls Ailis and Una for over twenty years. The girls suffer from a chromosomal abnormality known as Wolf-Hirschhorn Syndrome, which means they are non-verbal and require care and supervision twenty-four hours a day. They are wheelchair users, which can make transport a major issue, and at home must be moved with a hoist. The twins are fed through a syringe in their stomachs twice daily, and peg fed overnight, and must be showered daily due to incontinence. The condition further has led to added complications, including epilepsy and joint problems.
Damien, formerly an Assistant Director of Nursing with the HSE, gave up work in 2013 to care full-time for Ailis and Una with his family. He has since been active in lobbying for the provision of services for adults with intellectual disabilities; he is part of Stewarts Care Rights Review Committee, and has given presentations in recent years to National Carers Conventions. Damien’s decision to take early retirement from a rewarding career coincided with the twins’ turning eighteen. He has worked to highlight the difficulties faced by parents when a child is making the transition to adulthood and can no longer rely on schools or day care services. After the age of eighteen – in fact, between the ages of sixteen and sixty-five – services are comparatively scarce, and frontline staff and service providers under-resourced throughout the country.
Damien is the chair of PAID (Parents of Adults with an Intellectual Disability), a sub-group facilitated by Family Carers Ireland. The parents involved have designed surveys to map supports by county in Ireland and reported findings to National Carers Conventions; forged links with other organisations advocating for those with disabilities; and lent their support and expertise to academic research into service provision and carer resilience.
Of the twins, Damien says: “They can’t do anything for themselves, only smile,” adding: “They are so happy. They love music and sensory stimulation, and are very social in their own way. A lot of energy goes into looking after them.”