Ben, who is 13 and has Kabuki syndrome, is nonverbal and has complex learning and physical disabilities. His mother told the Journal how he has been staying in temporary care homes in both Derry and Omagh, where his family can visit him regularly and he can attend school but they have been told that he will have to be moved to Dublin, Meath or even Scotland for a permanent home.
Daniel McCrossan MLA told the NI Assembly how the Health Minister must intervene to take care of Ben and his family.
He said, “To be honest, I was quite shocked to hear the details of that particular case, and about the trust’s plans to relocate Ben, a vulnerable child, hundreds of miles away from his family, friends and support network. The proposal would even move Ben hundreds of miles from his school, Knockavoe School in Strabane town — a school that I know well — which is delivering for many disabled children across the wider area. It is unacceptable for trust officials to simply come to the family of a disabled child and tell them that they plan to move their child so far away. It must be addressed. In correspondence with the Health Minister, we have asked that he intervenes immediately to ensure that proper, full facilities, care and support be provided to Ben and his family.
“As an institution, we must ask ourselves whether we are doing our best to look after the most vulnerable and marginalised people in society. Indeed, the measure of a society is how it treats its most vulnerable. When I delved into the matter further, I found that quite a significant number of families in Northern Ireland are affected in this way. It is not good enough. The Minister of Health and the Western Trust need to intervene to ensure that Ben can be looked after close to home, where there is support in place and his mum can see him as often as she would like. It is also important to note that many children like Ben who are nonverbal cannot express how they feel or what is annoying them, or communicate. Indeed, that is a form of communication. Where those children are voiceless, we need to be their voice. That is why I am asking in the House that the Minister of Health hears that mother’s pleas and responds to the needs of that child.”