End the treating of severely disabled children as adults at 18
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My son reached 18 in September, a milestone he was never meant to see. He has a life limiting condition, Sanfilippo A Syndrome. It should (and it was) a cause for celebration but in the background is the constant fight that we face.
18 is just a number to Harrison. He doesn't have the needs of a young adult, he has the needs of a child. He is stimulated by childish things, his care needs are like that of a young child but in the eyes of the law he is an adult. Respite and activity days afforded to him as a ‘child’ are lost. Very soon he will lose the Consultants, Community Nurse and other Health Care Professionals who have known him and me for so many years.
Adult Respite and hospital wards are not suitable for him. Yes, it gives me the breaks I need, but what is a break if you spend that time worrying how he is? Is he getting the attention and stimulus he needs or are they merely providing a baby sitting service.
And this is happening to hundreds of children across the UK who are in similar situations. They are children thrust into an adult world that is not suitable and will never be suitable for their needs.
I would love to get the law changed but how do I start? Who do I approach?
One children’s respite home tried recently to console me with the idea that although they could no longer offer him a place or any help; when the sad day inevitably arrived, they would be there for me and Harrison.......as long as that day was before his 19th birthday. I think I was meant to be comforted.
The word ‘Transition’ is used by so many in this field, but its not a transition, its a brick wall that you never realised you would have to break down.
Please show your support and just maybe I can use this as a starting point to make a change for all the children to whom 18 is just a number, not a sign of their adult-hood. I would like disabled children with a life limiting condition to be treated differently or that each child can be looked at as an individual case - even if that change is that they go into adult-hood at 21 it will make a huge difference to so many families.
If you would like to talk to me about this then email me at firstname.lastname@example.org
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