Sunday, 14 December 2014

Seth turns 7 and has his Christmas Concert - but it's a frightening time for young people with learning disabilities

I read an article on the Mencap website, on Friday. It was how a 23 year old man with a learning disability died because his care plan wasn't followed by the supported living service he was, unhappily, living in. Nico was born with cerebral palsey and later diagnosed with profound and multiple learning difficulties. Nico was moved because his local authority stopped funding his school placement because they "deemed his care package to be too expensive", even though his family and experts in the field warned that the alternative placement could not meet his complex needs.

According to Mencap in research they conducted in 2013, over 1200 children and adults die across England every year because they are not getting the right healthcare.

Seth turned 7 two weeks ago. We had a lovely party and I'm so proud of how he is growing up. He stands much straighter now, showing off how tall he is. He's starting to move his arms and hands in a new way and is able to hold onto items now. We have frustrations with some services and equipment but on the whole the system has worked for us and for Seth. Hi school in particular - Friday was the school Christmas Concert and he was a star on stage bopping to the music in 70's garb (yes that is a dancing reindeer behind him!)

But what happens when he turns 16 and leaves children's services? Most of the time I don't think about it - it's a long way off and why worry about something that's not relevant right now when there is enough to worry about that is? But everything I do now is with one eye on the future - I'm terrified that Seth will be reliant on others for his basic needs. I'm trying to teach him to feed himself and I'm trying to potty train him so that he will have some control over the very basics of his life. When his older I want him to be able to experience leaving home and live in a community where he is with his peers, continuing to learn, having fun and stimulated. I know at least one place in England like this but I imagine its places are hotly contested and expensive.

The description of Nico in the Mencap article reminded me of Seth and exemplifies all the fears I have for Seth's future. Entirely vulnerable to the whims of the Local Authority budget and a system that continually fails the most vulnerable.