I've already discovered a few depressing things about adult services, and the second meeting just added to this list. The real situation is as clear as mud. The only clear facts seem to be that in Smiley's area there will be training places available for young adults with mild disabilities, but nothing is in place for those more severely affected like my daughter. No premises you see. This is because of the budget only being announced in June, or so I was told. That lack of planning doesn't make sense to me. But it seems that no-one is to blame for this situation. Apparently there is a good relationship between the health service and the organisations that run adult services. Perhaps the management all play golf together? Of course it will be the young people caught in the middle who will suffer: they will miss out on activities, therapies and socialising with their peers: being stuck at home with ageing parents is NOT a good substitute. Even though I bring Smiley out into the community, we never meet anyone like her, and we've never found activities for adults like her. I don't know where they go, or what they do.
Parents like me are being asked to lobby politicians for more funding for services - yet another job dumped into the laps of already overwhelmed carers. A job that surely these organisations should be doing themselves. I did try this once, bringing my children in the rush hour to a local 'clinic' and then spending two hours apologising to everyone else for taking up so much space and other things, and then getting five minutes with the man himself. All for a standard letter that I received about three months later. I've no wish to put any of us through that again. But I might call them out on twitter.
There may be no transport either to any service that is provided. Yes I know that's a privilege. But it means I have time for my other teenager in the morning, and it enabled me to work for many years, as dropping Smiley to her school in the rush hour involves a round trip of about 90 minutes on a good day, when you include the loading and unloading of the van, and then settling her in the classroom. It's not the same as dropping your average teenager off at the local secondary school. I have no idea where the adult service might be located. And neither does the organisation that is supposed to be providing it.
What happens next
Nothing. At least until the end of June, or so I've been told. So far not one mother I have spoken to has anything positive to say about adult services or the transition process, and I'm starting to understand why. Yet I know that there are good services out there and good people working in them, I hope I can find one of those places for Smiley, but they should be available for every school leaver with disabilities who cannot access meaningful employment. In the meantime, it's a game of writing, waiting and wondering.
Organisations that can help in Ireland
Special Needs Parents Association