Hearing the phrase 'next year your child will be starting in adult services' is guaranteed to strike fear into the hearts of most parents of disabled children. Yes, you probably had to battle the system to get your child a decent education, but with any luck those battles are in the distant past at this stage, and now you're older and wearier and faced with the possibility of doing it all again.
It's all a big secret you see. What happens when school ends. There are no glossy websites showing what is available, your questions will be brushed off, deferred until the planning meetings that take place in the months before your teenager leaves school. Meanwhile the actual services will deter you from visiting, if you manage to find them. What's more the law is not on your side. Your child has a constitutional right to an education, but I'm not aware of any similar rights for adults - disability rights campaigner Kathy Sinnott took on the Irish State over this issue in the 1990s, but ultimately lost.
Well the process has begun for Smiley, and it does not fill me with hope. The first meeting was held with people who know and love her (I think!) and we all worked on a document that describes her and her needs for anyone who will be involved in her care in the future. So far, so good. But the snippets of information that I picked up at the meeting and on-line were not so hopeful...
1. There are four respite places for young adults like my daughter in our local area. FOUR. There are hundreds of families who needs respite, but no funding to develop new respite or residential services has been provided for years. I found this out when I asked what would happen to my daughter if anything happened to me. The answer? She would take up one of the respite places, leaving only three. That is what has happened: respite places have been converted to residential places. And if five carers like me get sick at the same time, there will be a crisis. Meantime the Irish Government rushes through PR-friendly legislation to ban branded cigarette packets and our politicians smugly talk about the economic recovery.
2. There are lower staff ratios in adult services. Well how does that work for my daughter? Her needs have not changed, and looking after her is more time-consuming than it was when she was little, because it now involves the dreaded hoist.
3. The Health Service will not finalise the budget for adult services until June. So your teenager will probably leave school with no idea where he or she will be going next.
4. It could be Christmas before a place is found. That's what happened last year. Perhaps even longer if you turn down the first one as unsuitable.
5. I will need to be well-informed, get support from other parents and the health service if necessary and be prepared to fight for her needs.
Why do I get the sense that adult services may operate on the principle that desperate parents will accept whatever they are offered?
Well I won't. You'd better watch this space...
For part 2 of this series click here.
Reasons to be Cheerful - Happy Mothering Sunday #R2BC - Lucky me, the girls made me breakfast in bed Happy Thursday friends, How are you doing? I'm having a funny old week. there is nothing particularity wrong...