After school with severe disabilities. Part 2

This is part two of a planned series of posts about our experience of the transition from special school to adult services for my middle daughter who finishes school this year. She has severe physical and intellectual disabilities and realistically will need twenty four hour support for the rest of her life. Most young adults like Smiley attend "adult services": training centres for the more able and day centres for the rest. I know as little about them as you do, but I am trying to find out. There is a process to be gone through, and I plan to blog about it here, but without using too much jargon or pointing too many fingers, as I imagine that most of the large organisations that provide services for children and adults with disabilities operate in a similar way.

No premises


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.

Lobbying


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.

Transport


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

Inclusion Ireland



11 comments:

  1. If anyone has suggestions for other key organisations that I should include as sources of help, either in Ireland or elsewhere, I would be happy to include them.

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  2. Sorry I don't have any suggestions, but all I can say is good luck and I really hope everything works out in the end. I know from experience that dealing with support services is hard enough when kids are small, but it seems even harder when they grow up...

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  3. well, I am writing from the US and things are not much different here for our kids with more severe disabilities. I have decided to keep my girl home, the available day programs are awful. I can't take a chance. She is 18, aging out of the school system soon and she will be fine at home. I find what you share about your country very interesting and look forward to whatever you share. Thank you. Lesley, mum to Sarah, undiagnosed, full care, big smile

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    1. Thanks so much for reading and commenting, and very sorry to hear that the days program are awful in your area. Wishing you and your daughter the very best for a happy future xx

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  4. Good luck, I hope and pray you find something suitable soon. xxx

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  5. Sounds like such a nightmare. I cannot believe, nor understand, how they cannot have even thought of services fro adults like your gorgeous Smiley? I do hope this raises awareness and gets you the placement that is very much needed. And the transport too xx

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    1. I hope that writing about it will help other families in some way xx

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  6. I really hope you get what you want for Smiley come June. It's a miserable system and so very unfair.

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