Some thoughts on New Directions, the Assisted Decision Making (Capacity) Act and more
Perhaps you are wondering what on earth I am on about? So here’s a couple of definitions:
New Directions is the latest disability-related policy from the Irish Health Service (HSE). My understanding is that it was introduced to address all the scandals of poor care in residential homes for adults with disabilities. The idea being to move all those affected back into smaller homes in the community.
Now the policy has been extended to adult day centres, which are provided for those adults for whom paid work is not possible due to the severity of their disabilities. They are now to be based ‘in the community’ too.
They sat in a row in the shopping centre, watching the passersby. They were quiet and good. They were adults sitting in wheelchairs. A carer stood behind them looking at her phone. I don’t know how long they were there. Perhaps it was only a few minutes, but it bothered me. Especially when I thought about my daughter’s future.
Read more here
Looking back on old photos can be bittersweet. Especially when you have children with special needs. So many of us hope to carry on with family life as normal, and at first we think we can. And perhaps some families do.
But many differences become more noticeable as time goes on. More and more time has to be spent looking after their needs and attending appointments. Meantime other children grow older, and grow away from your child.
There are two moments in particular that stand out for me. One was a letter offering a secondary school place to Smiley at the same school attended by her sister. I cried. You see for several years I’d assumed that she would go to mainstream school. I checked them out for wheelchair accessibility. I put her name down on the lists. In the intervening years filled with battles with the State to get her any education at all, I’d forgotten my early optimism, until I got that letter.
The other time was much earlier, just before the battles began.
It was the occasion of her last birthday party.
When she was three.
“My daughter the student” has a nice ring to it, I think. And guess what? It’s kinda true. Smiley’s education has been extended for a further two years. All the hard work has been worth it. But the battle is not yet over, as many other school leavers will have no service in September.
So how did she get to this point? Well I had five choices for my daughter, which is not quite as good as it sounds, and they looked like this:
If I truly loved my daughter I’d want to spend every hour of every day with her, wouldn’t I? Wrong.
If she didn’t have special needs you wouldn’t expect that for longer than a couple of years at most.
It’s the summer holidays right now and I spend at least 8 hours a day directly entertaining and helping my daughter, sometimes that involves multitasking (hello Twitter and Tesco!) but less than when she was little and enjoyed watching and chatting to me while I did everyday household activities like cooking and cleaning.
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I don’t think it was the fault of the staff, I don’t think it was lack of information, I don’t think it was the place where she stayed. But last time that Smiley came home from respite she was clearly traumatised. And I don’t say that lightly. She was only there for one night. Lots of preparations had been made, yet something went badly wrong.
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You’d become a millionaire if you could bottle the joy and pride of the past few days as we watched waves of young people arriving home to Ireland from around the world to vote in a referendum about extending the rights and responsibilities of marriage to the LGBT community, followed by the excitement of the count as it became clear shortly after the boxes were opened that this could be a life-changing result for thousands of people. I am so delighted that putting a simple X in a box is going to make so many people so happy.
But I have a confession to make.
FInd out more here