I haven't posted about disability related issues for a while; things have been going relatively smoothly on that front, however it seemed appropriate to do so today, since we have so far, fielded about eight phone calls in relation to:
1) our elder disabled son's pressure relieving mattress -(it broke down)
2) both our disabled sons' feeding systems- (the local NHS has appointed a different supplier)
3) our disabled daughter's Statement of Special Educational Needs- (her statement is being amended i.e. the wording is being changed, and as with all legal documents, the wording is very important.
1.The mattress:- he has been supplied with a temporary substitute which is too short! However, the engineer promised that " someone will come out with something that will close the gap".
2. The feeding systems:- the caller introduced herself and said that the new system to include pumps, feeds and plastics would start from 1/10/10 and she would send someone out to train us and we had been sent a letter to tell us, and have a nice day.....whoa....hang on there! What's this all about? What letter? we haven't a letter!
3.The lady from the County Special Needs Team:- our daughter changed schools 12 months ago, the county would now like to change (amend) her Statement to reflect the change of school and changes in the way her SENs are met.
We have appealed no less than three times to the Special Educational Needs Tribunal where we have believed our childrens' SENs are not being statemented, or met, properly, and will have to be quite vigilant over the new proposed Statement, to ensure that the Local Authority fulfils its duties properly.
Sorry to lapse into jargon: SEN means 'special educational needs'; where children have a Statement of Special Educational Needs, the Local Authority is legally bound to meet all those special educational needs. For parents of affected children, it's imperative to ensure that the description of the child's Special Educational Needs on the statement is comprehensive, and that the statement has provision to meet each and every one of those special educational needs. As I said earlier, it's a legal document, and binding on the Local Authority.
An excellent source of help and information for parents of children with SEN in the UK is IPSEA. They have a dedicated helpline advertised on the website, and some very experienced advisors.
(If you experience difficulty in getting through, persist, IPSEA is an invaluable source of help.
I hope and will pray very hard that these practical matters in caring for your children wiht disabilities resolve themselves. I have a brother with severe autism and he who suffers very much from his condition.
ReplyDeleteHi Kate I've just found your blog havent read through the older posts yet but this one rang loads of bells with me. One of my sons is disabled and has various medical aids for his condition & school issues etc. Sometimes feel like I'm all alone when "Fighting" battles for basic needs. Good to read your post, and helpful.
ReplyDeleteHi Mary, thank you for your prayers!
ReplyDeleteI'll remember your brother in mine.
PBWY, Welcome!
ReplyDeleteYou are certainly not alone in having to fight battles on behalf of your disabled son, though the system can sometimes make parents feel isolated. In twenty three years I've met many parents of disabled children, and it's the same sad story of having to argue, fight, for things their children need,(not wishlists). Thanks for your comment and kind words! God bless your family.