Protecting the rights of people with Special Needs

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.

Thanks TwiceAsNice I will take a look at SNAP

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.

Never thought you were

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

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

CQC

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!

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?

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 had no real help till my daughter turned 18 then social services seemed to think she should be moved into supported living
we tried once and i found the same thing ... unsupervised .. left to fester in her room all day so we took her out
she did not want friends and still does not
care for Autism is disgusting to say the least
at the moment it is out of our hands but we have to go by the professionals

Gemmasue Gird your loins and prepare for mammoth battles when your DD reaches 18. Her Local Authority has consistently tried to get my niece with similar problems into accommodation that was entirely unsuitable, leaving her alone and unsupervised most of the time. They say that she can socialise with other people in the flats, but provide no community meeting room, and ignoring the fact that someone with learning difficulties and severe Aspergers, is highly unlikely to voluntarily seek the company of others she does not know. .

I assume you know about the National Autism Society. They can give a lot of help and support to parents

no she is 2 hr drive and 2 hrs back so weekly visits are all we can do ....its getting harder and harder to put on a happy face

a constant round of meetings and tribunals but because of her age they dont want her returning home .. her nephew was born 1st nov 2012 and shes yet to meet him ..but we soldier on pretending we are ok

i hope you get the help you need

Hi newgran I agree there are not enough schools that specialise. We also tried mainstream but it did not work out. We are fortunate to have found a special school that meets her needs at present and are looking at colleges to help improve her life and social skills.......she also has ASD traits
After that I do not know, she is not able to live independently and will need 24 hour support so we have some difficult decisions to make.
I am so sorry your daughter has been sectioned, is she close to your home so you can visit her often? I do hope she is happy and staff are caring and understanding.

there are not enough schools that specialise in autism .. we tried mainstream schools but so little understanding ..... my daughter has been sectioned for the last three years due to not getting the help she needed when she was young

my daughter has ASPERGERS SYNDROME ... she is now 26 but used to stare at people when she was younger and got abuse for doing so ...

There is a Learning to Change Cumbria Disability Information Day at Rheged, Penrith,Cumbria on Friday 8th March 2013, 10am to 2.30pmit is the largest exhibition in Cumbria, North East and the Borders dedicated to those with disabilities and/or additional needs, their families and the professionals who work with and support them. Entry is free. There are over 100 stands plus free seminars, and a crèche facility.
Learning to Change Cumbria is a parent led forum dedicated to improving services for families with children/young adults with disabilities/additional needs
As a Grandparent but also have a 16year old with an acquired brain injury I will definitely be going

Jendurham. Like rojon I'm sure your Grandson would find an ASD School much quieter than a Mainstream school. Yes, there will be some noisy times if a child has meltdown,but ,in general a peaceful atmosphere is the aim. I
worked in one for many years ,so do have some experience in that field. Unfortunately places in ASD Schools are not easy to find ,but ,with a statement , it should be easier. Good Luck,whatever you and your family decide.

Do you mean a school specifically for Autistic children? I have been a parent govenor in a school for children whose main disability was physical, mostly cerebral palsy and also in a mainstream school. I found the special school was much quieter than the mainstream school. The numbers in the special school were so much smaller with classes averaging six that it would have been impossible for a high level of noise to be generated. I have visited other PH and LD schools and found them similar although I have never visited a school purely for Autistic children. Is that what you meant?

My grandson is ASD. We knew when he was little that he was different.
Noises made him scream. He is in a mainstream school, and has friends who look after him, but you have to watch all the time.
There are some who tease him, but they will stick up for him if anyone is nasty.
When my son and his partner moved to this area, he was sent to a different school on the outskirts of Durham. He never progressed at all in that school.
He is ten and the school he is at are going to ask him to do the Sats this year.
He has a 1 to 1 assistant for half the time.
When he was starting school in a village in East Anglia, they were asked if they wanted him statemented. They were not sure, but having been a teacher myself and having another son and daughter in law who are teachers, we all said do it before he goes to school, otherwise it will take too long to get into the system.
I do not think that my grandson could survive in a special school, particularly for autistic children because of the noise element. On bonfire night he wore ear defenders because of the noise and still wanted to go home.

An update on my son's situation. Due to a family bereavement I could not take the action I planned. He is still in this abusive relationship and although the physical abuse doesn't seem to have escalated she is pressurising him to sack his trustees. He can't easily do this and his financial adviser is well in the picture with regard to the situation. I have taken advice from someone who counsels abused men and we as a family will be following that advice.
She is so so clever. She would wipe the boards at the oscars. I know that he knows that she is just with him for his money and can only pray that he will get out of this relationship without too much damage being done to his self esteem. I know that he is frightened of her and that she has threatened us and his solicitor. She has ties with the criminal world.

are there any Gransnetters who agree with me and a couple of other parents that main stream education for disabled children is not neccessarily a good thing. Yes they get a better education but at what price to their self-esteem.

My son is one of several I know all approaching their thirties and some with degrees but non have jobs and non have friends except those they made while in special ed. What was the point apart from saving money

Thankyou all for your replies. They made me feel like crying but at the same time it was as if a big bubble had burst in my stomach. The police and paramedics in the three locations where incidents have taken place have been superb and I know on at least one occasion they have reported the incident to Social Services.
He at least had the gumption to call the police but this woman is so clever and he so wants to do the 'normal' thing of having a girlfriend who must be able-bodied.
I'm afraid I don't understand this idea that so many disabled people seem to have that only an able partner is acceptable. He did explain that when he looks at his disabled female friends he sees how the able world sees him.

rojon
I feel you are doing the right thing!
Unfortunately, some people seem to seek out abusive relationships and need to be safeguarded.
I hope all goes well for you and your son!
You know we are always here if you want help, advice, or just to vent your feelings.

rojon if the Social Services have agreed there is a safeguarding issue your son may be classed as a 'vulnerable adult'. You can talk to someone in his local police force to check this out and take advice about your son's situation. I've found my relative's police to be more approachable and helpful than other services. You're in a horrible situation and I'm very sorry for what you're going through. (((hugs)))