5 things I wish I didn't know about adult services

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.


20 comments:

  1. Depressing but necessary reading. I wonder how different things will be in 10 years time when my daughter turns 18. Not very, I fear. Hugs and strength for your fight x

    ReplyDelete
    Replies
    1. Things do change is enough people make a fuss - or take court cases! So hopefully things WILL be better in 10 years time x

      Delete
  2. Wow. Now there are 5 things that I WISH I didn't know about adult services. I didn't even realize it would be so complicated.

    ReplyDelete
  3. Hi, I'm new to your blog. This post makes me so smad - sad n mad at the same time. You sound like you are entering a real nightmare time. :-(

    ReplyDelete
    Replies
    1. Sorry to depress you, I try to be honest and this is how it really is, thanks for reading x

      Delete
  4. I hope in the end it works out for you and Smiley, although I suspect you have a battle on your hand to get there. It's so awfully unfair.

    ReplyDelete
    Replies
    1. It's also such a waste of energy and time for all concerned..

      Delete
  5. So sorry to hear this. It's going to be a stressful year isn't it? I hope and pray there will be a good solution found in the end.

    ReplyDelete
    Replies
    1. I will sort something out, she deserves no less x

      Delete
  6. I just want to add, I'm so naive that when I read there are four respite places, I thought you meant four institutions that run respite services. I think I'm as ignorant about this as most people who are not in the special needs tunnel. That's one reason (of many) that your blog is so important.

    ReplyDelete
    Replies
    1. Actually that's my fault for using what is effectively jargon and not thinking of all the people who might read this. Thanks for pointing it out and thanks for saying such lovely things too x

      Delete
  7. I really feel for you and Smiley. It is ridiculous that so much of the focus is on the early years... What about all those adults who are going to need care until they pass on.... in Nick's case, he could well live to 90! It is a frightening thought. Will be watching this space! xx

    ReplyDelete
    Replies
    1. I'm going to share as much as I can, because parents need to be aware and not feel they are boxed into a corner and have to accept whatever they are offered xx

      Delete
  8. The lack of adult services is universal and it doesn't look as if anything substantive is being done to correct it. The lack of services for adults is an issue that you will face with your son also. While our kids are in school, they aren't taught any practical life skills. The statistics on employment, independent living and other aspects of life are grim for young adults with ASD. One of the biggest probems is the lack of cohesive advocacy by the whole disability community. Few organisations supporting individuals with disabilities network with each other. Because the delivery of services is fragmented, it is difficult to empower the community as a whole and that is what would give disability a powerful voice.

    ReplyDelete
    Replies
    1. Totally agree - in Ireland there is such a plethora of organisations delivering services and representing different disabilities. I was asked to name some national disability organisation recently and all I could think of were Irish Autism Action and Downs Syndrome Ireland.

      Delete
  9. As soon as my son turned 16 he was pretty much abandoned by youth services (too old for it) but he is not quite old enough for adult services either. He is stuck in limbo at a time when we find we need support more than ever before.I don't have much hope. I hope thiings work out for you x

    ReplyDelete
    Replies
    1. It could be such a waste Louisa: I understand that teens with ASD often leave school at 16 when they find out that they can, and it is entirely left to their parents to try and encourage them to do something with their lives.

      Delete
  10. Thank you for the follow, as you will see from my posts, particularly, Harvesting the Disabled for Profit, there is no education, or support now after 16.

    Nor, the respite facilities attached to these schools, nor indeed any respite.

    Nor indeed any support. If you submit to a carers assessment, and are allowed to keep your child you will get no support.

    Before budget cuts I read in 2013 the maximum, if given anyway, to parents/carers was £500, wait for it,------------- per year.

    All education, after 16, is spying ad hoc packages, that only provide basic independent living skills, to make more profit from residential care. Skills your child will already have, but this education', is funded until 25, so a nicer little earner, for what particularly in the confines of the closed doors of independent living.

    The only future support is away from home, totally controlled unaccountable independent/supported living making huge private profits, that's the only plan, and obviously they don't tell you overtly.

    ReplyDelete
    Replies
    1. I'm horrified to read that this is happening in the UK and possibly about to being happening in Ireland too. I have added you blog to my sidebar to make sure I don't miss any updates and I and many of my readers desperately need to be informed. Thank you so much for your comment and for the service that you are providing.

      Delete