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Original poster

24/7 care for autism at home

15 replies

overthehill23 · 22/10/2023 14:45

Hello
Just wondered if anyone had some advice I have a family member with autism (no learning disability) who's been sectioned for 19 months we are really trying to get them home, the team have said 24/7 care at home is an option and they are looking into it (and have said they can fund it) they are looking but have suggested we look and I just wondered if anyone had any suggestions.

OP posts:
AluckyEllie · 22/10/2023 14:50

I think getting the care may be difficult, there’s such a shortage of people working in the sector. It’s low paid and stressful, can be challenging and thankless (although at times rewarding.)
Is it just one carer they will need? Is the person violent? Will they need specific training or just generic?

TiredMamOfTwo · 22/10/2023 14:54

Is supportive living not an option?

Original poster
overthehill23 · 22/10/2023 14:54

Sorry I should have mentioned more in my post it would be 2:1 care and no risk to others just self. They would need some training. Yes I know there's such a shortage but the alternative is for them to be in a long term autism hospital and we and they don't want this. I know some hospitals may be good but I also know some aren't and I don't want this for them. They are 25.

OP posts:
yelrac · 22/10/2023 14:57

Hi, have a look at the local authority supported living. I work for a local authority and have people with similar sounding needs, living in bungalows with 2:1 support. I'm in the North East where we have North East Autism Society who also have properties where that type of support is offered - there may be an equivalent where you live.

Kitkat1523 · 22/10/2023 15:02

If they have been under a section 3 then they will be entitled to free nhs section 117 aftercare…bit like CHC funding ..l.how it actually pans out depends ….the care corordinator sorting out discharge planning will be able to tell you more

Original poster
overthehill23 · 22/10/2023 15:10

I'll have a look at our local authority more. General
Supported living with more than one person isn't what we are looking for. But supported living with just them would work fine I am trying to google and have approached a couple places. Just trying my best to get options out there

OP posts:
Original poster
overthehill23 · 22/10/2023 15:11

Yes with the section 3 and 117 we also have the autism/LD commissioning team and ICB involved who have said funding isn't an issue which is good.

OP posts:
CorylusAgain · 22/10/2023 15:19

Is there physically the space to accomodate your loved one and 2 carers, 24 hours a day?

I completely understand why you might feel that a hospital environment is not in his/her best interests.

But an at home package will be a monumental undertaking and you haven't indicated who else would be at home and impacted by that happening.

I'm so glad to hear that you have secured funding and home support is being considered. I don't have direct experience myself but know of others who have been desperate to get this but failed as residential/hospitalisation were only options offered 😥

Original poster
overthehill23 · 22/10/2023 15:22

It would be in their own home so nobody else. The autism team and nurses at the hospital are in support of 24hr care and know that being in the community would be best as they can access the stuff they used to do. Yes we are very lucky with funding. We've had many failings whilst they've been at hospital and we are just sacred these will continue. It would not be residential the other option is secure hospital and even after winterborne has brought procedures into light it's scary. They have capacity and it's not what they want either

OP posts:
CorylusAgain · 22/10/2023 15:35

overthehill23 · 22/10/2023 15:22

It would be in their own home so nobody else. The autism team and nurses at the hospital are in support of 24hr care and know that being in the community would be best as they can access the stuff they used to do. Yes we are very lucky with funding. We've had many failings whilst they've been at hospital and we are just sacred these will continue. It would not be residential the other option is secure hospital and even after winterborne has brought procedures into light it's scary. They have capacity and it's not what they want either

Sounds very hopeful.
I'm sorry you and they have been let down and your love one failed whilst in hospital. But sadly not surprised.
Glad that they are being listened to now.
Good luck. I'm sorry I can't offer practical advice

cansu · 22/10/2023 15:43

My ds is now in own bungalow with 2.1 carer support. He was sectioned. Ld and autism. My advice would be to start work to secure own tenancy for the person and then ask social care to put the care contract out to tender.

Original poster
overthehill23 · 22/10/2023 16:00

@cansu this is what we are looking at. We are trying to get tenancy know (they did have one but being in hospital so long it's stopped) and autism team have said they will put that forward for own tenancy to care providers. We just wondered if we could help putting our own research. I thank everyone's answers so far.
Yes they've bbeen let down for years to be honest in and out of hospitals so we really want to
Find a long term solution that works.

OP posts:
Greygardenz · 22/10/2023 18:40

My brother lives at a Mencap home which has residents in bungalows or flats. The benefit of this is that he has his own space but with guaranteed carers. When he lived on his own with carers we were constantly let down. A carer would be on the rota, but would be sick and so I'd get a phone call saying I'd have to come and cover. It was incredibly stressful.

Glasscabinet · 06/02/2025 14:34

@overthehill23

wondering how you all got on? We’ve got a family member with similar needs and we’re trying to come up with a plan.

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