Ms Hazel McGeough:

Spina bifida literally means a split spine. As it can occur anywhere on a spine, it can affect any part of the body. The majority of our members are paralysed from the waist down and as their leg movement is highly limited, they therefore are wheelchair users. There also are other complications, such as bowel and bladder incontinence, skin conditions and scoliosis. As Mr. Kennedy mentioned, it is a lifelong condition as one is born with it, one lives with it and one dies with it. As a family support worker, I work on the ground with families and siblings of people with these conditions. We devote our time to advising and supporting them in every way we possibly can. For example, I work with a young man living in the Louth area, whose name is James and who is 32. He was born with spina bifida and hydrocephalus and is a full-time wheelchair user. James is like you or me, in that he has wishes and dreams to do things and to carry out different tasks in his life. While he lives at home at present, just as would you or I he aspires to moving out of home and living independently, to drive, to go to college and to meet someone special. Basically, the reason we have appeared before the joint committee today is to ask for members' help to help those like James.