Protecting the rights of people with Special Needs

Hi FlickertyB.
I am prepared for yet another battle, fortunately she can stay at school until she is nearly twenty and then hopefully have a couple of years at a residential college although I am being told already that there may not be funding.
I am in touch with the National Autistic Society and other support organizations and they are great. I am also involved with a county wide parent/carer forum working with professionals to improve the services for disabled and additional needs.
What is happening to your niece and newgran's daughter and many others is very worrying, and these young people deserve better

i wish i had not been introduced to the mental health system .. its frightening for sure but i wont go into their treatment at these hospitals i have been complaining non stop to CCQ

i feel so helpless and as a parent there is limited help for us MIND were the most helpful but i mean real support

i have noticed a lot of Aspies have problems dealing with puberty has anyone else noticed this?

My knowledge of them is purely from DLA and ESA tribunals. But I agree the problems they face do not seem to be understood by many people. Part of the problem seems to be that they don't really fit into the boxes.
Benefits are all about fitting people int boxes instead of making boxes for people!

CQC

Hi newgran. I also have noticed young people with ASD have greater problems dealing with puberty. My own daughter with an acquired brain injury has non executive function and she also struggles. Does your daughter have a social worker?

Hi Galan I agree with you it is all about ticking boxes and as for DLA forms do the people that compile them have any idea of what it is like to have a child who is not physically disabled but has very complex additional needs/mental health issues? Having just got to grips with children's services I now have to navigate adult services with very little support from anyone as newgran is also finding. It seems to me that families have to reach crisis before there is any support of any kind

I am sorry Galan, My last post sounds like I am grumbling at you, which was
not my intention, I appreciate your comments on this thread

Never thought you were

Hi there is a national support organisation called SNAP which stands for special needs and parents. It supports families to get the best help regarding schooling and socialising support. My God-daughter has ADHD and is on the autistic spectrum and my best friend, her mother found them really helpful especially when Emma was statemented. She is nearly 23 now and works part-time and manages well, although there are limitations to what she can do and she finds some social situations hard. Google it for your local number and good luck with everything.

Thanks TwiceAsNice I will take a look at SNAP

update.
My son has finally split up from his abusive partner. He is in bits. She claims she is in bits too but she managed to get him to spend his whole quarters allowance in two weeks on her and her friends. He now has no money until January apart from the rent from a property. I suspect he has let his DLA claim lapse too.
I hope I am up to the job of helping him through.