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Hi i am a widow and I have 2 children a boy and a girl. My son has downs syndrome, is autistic, has hearing and vision impairments and has complex learning needs. From May this year he has been unable to walk and has been in hospital since then. He is soon to be discharged and will now be in a wheelchair. Until now he has lived in his own flat with 24/7 care but now he is having to come back to live with me as there is no suitable accommodation for him.

I am presently sorting out his flat to hand back to the housing association but i am also looking at adapting my home for him to come back to me. I am extremely stressed and trying to find the right care and support for him. My daughter is presently living in Aberdeen.
Marko, this really isn't the answer, you and going to be worn out very,very quickly.

I have a son with LD, in his own flat with carer support. I'd like to be able to care for him full time, but I just can't.

He is going to be in an even worse mess when you die or get too ill to care for him.

I would put off handing the keys over for a whle, as then he will have lost any entitlement. Has anyone mentioned NHS Continuing Healthcare to you, 24/7 care if necessary, either in residential care OR his own home, free of charge. Insist they do an assessment for this before he leaves hospital.
CHC / NHS Continuing Healthccare ?

Main thread :

https://www.carersuk.org/forum/support- ... read-35998


Needless to add , SHOULD BE CONSIDERED BEFORE any hospital discharge !
Marko_1905 wrote:
Fri May 17, 2019 9:36 am
Hi i am a widow and I have 2 children a boy and a girl. My son has downs syndrome, is autistic, has hearing and vision impairments and has complex learning needs. From May this year he has been unable to walk and has been in hospital since then. He is soon to be discharged and will now be in a wheelchair. Until now he has lived in his own flat with 24/7 care but now he is having to come back to live with me as there is no suitable accommodation for him.

I am presently sorting out his flat to hand back to the housing association but i am also looking at adapting my home for him to come back to me. I am extremely stressed and trying to find the right care and support for him. My daughter is presently living in Aberdeen.
The accommodation/adaptations is one thing, ok we know that can take time because there is so much bureaucracy involved.

But does that come hand in hand with the care package itself? How come he can't have the 24/7 care at home while the accommodation is resolved? Its completely inappropriate for them to even push a disabled adult with high/complex health/social needs on you and not even have some measure of support in place.

What BB said, insist on the CHC assessment before discharge.. if the hospital try it on with "he wants to go home" or any other dirty/underhanded tactics to railroad him out, you need to stand your ground and emphasise it is in his best interests that he be properly assessed for the support needs your son will have in a community setting, not to mention the risk of an unsafe discharge if they do not properly go by the book.

Honestly cases like this are where the social workers are supposed to pull their sleeves up, it can't be left for whatever random person is on duty in the office..maybe consider an advocate for your son as well to re-enforce the necessity of independent living because I would be fearful of them withdrawing support and playing the financial card if he returns home.

My main caree from those I look after is an adult sibling with complex needs, and I love them like a son, but I'm telling you right now, it is a struggle to get through the door even WITH the minimalistic level of equipment we have here, it would not be workable without it, I know you love your son but for both his/your sake and your daughter, it would be dangerous of them to allow him home without the various equipment in place as a bare minimum.. and you will need that backup (care package) in place as well.

You have a say in this, and he is your son don't let them dictate what happens
They get to bugger off home on the weekend while the rest of us are changing pads/mopping sick up.

Best wishes

-HB
" By the book ? "

The BIBLE on hospital discharges :

https://www.nhs.uk/using-the-nhs/nhs-se ... -hospital/


In short ... by the book or ... NO DISCHARGE !
Also check with housing association if they have any suitable properties that would meet his needs, or that can be adapted.
As much as you love your son and want what is best for him, please please make sure that if you do bring him home that all adaptations are made beforehand, also that the correct care package is in place.

Do not accept verbal 'promises'. Get everything in writing. Like already said above, adaptations take a while and you need think on whether you can cope in the meantime.

x
As hard as it may seem and despite what the hospital may want, I dont think you're obliged to have your son come to live with you. Did the doctors say why your son isn't able to walk. Before he would leave hospital, it's up to the occupational therapists to assess what aids are necessary and put those in place first. Don't rush to have your son discharged.