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Severe Autism + Severe learning and behavior - Carers UK Forum

Severe Autism + Severe learning and behavior

For issues specific to autism / Asperger Syndrome.
Hi, all im pretty new to all this ( forums not asd lol ) not sure what i need really... friends, a good vent,a year of sleep? lol My son is 19 and ( as the title says) on the lower end of the spectrum, he has no communication , non verbal, doesn't understand pecs, double incont and basically needs 1 to 1 support 24/7 , im a single mum and i have 2 other sons 15 and 12 . now that we have transitioned from children services to adult service im not sure which is worse... while in children's server we had 10 different social workers over 12 years, and so far in adult services im now on his 3rd... you couldn't make this up , finally got him a day center placement not that there is a huge choice for him, and got 28 days for respite which considering he got 60 days in children's because of his behavior, 28 days is clearly not enough. So because of recent event where hes been more agitated and he gets physical with me * scratches and pushes * im looking to the future of him moving to a full time resident care , and im honestly exhausted with it all , does the stress ever end! I dont want him in his own house/flat with carers i want him in a housing unit that has other ppl living there to, as he would choose to be away from everyone all the time and its not healthy for him, so a group environment is going to be better as hes more * forced* to at least have more than just his carers with him ( if that makes sense) im not starting this properly till next year as i want to have a good research on things, and questions i need to ask etc so does anyone else have child/adult on the lower end of the spectrum ? or any advice about how to move forward with this future move would be great :)... sorry for my ramblings! thanks for reading
I suggest that you start by Googling NHS Continuing Healthcare Framework, then look at the "Checklist Assessment". It's a bit of postcode lottery, but if he qualifies it would mean that he was entitled to FREE care.
Has anyone offered an educational setting?
When he was at school, what ratio of staff to pupils was there?
Have you told Social Services about the attacks? It is still domestic abuse.
They have a duty of care to you, as well as your son.
Have you got a plan for what you will do next time? Personal alarm?
You can make a formal complaint of physical abuse to Social Services.
Please be careful, maybe even talk to the Police in advance of another attack?
Hi Sarah,

I have taught children with similar needs to your son and I'm still in touch with a few of their parents. (I also care for S who has autism (he is very autistic but is able to to use a communication aid and has a moderate learning disability.)

Many day centres are not very autism-friendly; if his behaviour has got worse since leaving school - it could be in part a reaction to the day centre. I'm not saying don't send him, I realise you need the break and could not have him home 24/7, but he might be better in autism-specific residential setting.

Those with such complex needs and a requirement for 1 to 1 support are usually all/part funded by continuing health care as ultimately the NHS has more money in their budget than social care. Usually once the social worker realises their package will be expensive - they usually initiate the continuing health care process for young adults with complex needs. Does your son have a community nurse or is under the learning disability (NHS) team? If he doesn't/isn't then ask your GP to refer him. They know their way around getting continuing health care funding and are a good alley to finding residential placements.

The Challenging Behaviour Foundation has lots of information on transition, housing options etc and is aimed at those with severe/ profound learning difficulties https://www.challengingbehaviour.org.uk ... n-leisure/

That's all for now I need to cook dinner.

Melly1
Melly1 wrote:
Thu Sep 23, 2021 6:26 pm
Hi Sarah,

I have taught children with similar needs to your son and I'm still in touch with a few of their parents. (I also care for S who has autism (he is very autistic but is able to to use a communication aid and has a moderate learning disability.)

Many day centres are not very autism-friendly; if his behaviour has got worse since leaving school - it could be in part a reaction to the day centre. I'm not saying don't send him, I realise you need the break and could not have him home 24/7, but he might be better in autism-specific residential setting.

Those with such complex needs and a requirement for 1 to 1 support are usually all/part funded by continuing health care as ultimately the NHS has more money in their budget than social care. Usually once the social worker realises their package will be expensive - they usually initiate the continuing health care process for young adults with complex needs. Does your son have a community nurse or is under the learning disability (NHS) team? If he doesn't/isn't then ask your GP to refer him. They know their way around getting continuing health care funding and are a good alley to finding residential placements.

The Challenging Behaviour Foundation has lots of information on transition, housing options etc and is aimed at those with severe/ profound learning difficulties https://www.challengingbehaviour.org.uk ... n-leisure/

That's all for now I need to cook dinner.

Melly1
Hi, yes he has full funding for his care, his day center is specifically for Autistic young adults and so far hes been fine and seems to be enjoying it , i will defiantly check out the challenging behavior foundation, thank you!
Sarah,

Social care will pay for a day centre etc however, if he is in residential care and needs 1 to 1 then that's when you will often need a combination of NHS funding and social care funding or NHS funding.

Melly1