Worried for the future of my disabled son, I have a few questions!

mylifemyrules

Hi,
I'm hoping someone who has been through this before can help me. My son has autism, epilepsy and a genetic condition. We had a meeting with his geneticist this week so said we should prepare ourselves that he may need care for the rest of his life. Now, I just can't stop worrying about the future for him. I am his full time carer and obviously I will care for him as long as I possibly can. I know there are supported living places but I also wondered if anyone had kept a adult child at home and arranged for carers to come in? I didn't know if it would be possible to buy a little bungalow for him and arrange carers? There are fantastic day centres around us but not much in terms of supported living. Just wondered what others experiences have been? 

Disabled persons trust and help with renewal of benefits is there a professional organisation that can help with this? 

With carers allowance am I allowed to save it up or overpay my mortgage with it? Im not on universal credit so no concerns with that. 

  Thank you for reading.

Albermarle

It is not clear from your post how old your son is, and this matters in terms of what the best way forward might be.
You talk about an adult child, does that mean he has gone through childhood without being diagnosed, or having any support ?
is he at school ( or was he)?

With Carers allowance you can spend it on what you want.

HobgoblinBT

OP,  are you able to describe the nature of your son’s autism/ disability and his abilities/life skills age etc?  

Many people on this forum will have personal experience of caring for someone with learning difficulties and preparing them for life away from/ when parents are no longer able to care for them.

Savvy_Sue

All I'd say is that you need to be prepared that whatever arrangements you decide are best for your son, it will take a long time to get them in place, from what I've seen, whether that's getting the right care team in place at home, or finding supported living. 

Does he have a social worker? Have you had a Carer's Assessment, for YOUR needs?

marcia_

 I have the same concerns and have signed up to mencaps webinar on wills and trusts. 

 https://www.mencap.org.uk/advice-and-support/wills-and-trusts-service 

MouldyOldDough

Also a council tax discount / https://www.gov.uk/council-tax/discounts-for-disabled-people
I will add - that he does really need a care needs assessment ....

Albermarle

The OP has not replied for over a week. You can see from their profile, they have started 4 threads in the last 18 months and not replied to any of the comments ( nearly 30 in one case).