Caregiver for 18 year old in care accommodation

[White25]

Can anyone tell me how do I become a caregiver for autistic daughter, as she is deteriorating in care. Thanks

[Jofisher]

She would need a personal health care budget and then you can employ staff or family but you have to seek permission to do that, it would be wise to speak to your social worker unless she’s funded by continuing healthcare if she is then you need to discuss with them and tell them your not happy with what’s happening maybe also get her an independent mental capacity advocate who can help her and you. Good luck but make sure your really prepared as you don’t want the move to fail.

[Bergersil400 in reply to Jofisher]

During early days of pandemic I asked continuing health care team if I could be the care giver as lost all her support she had with 2 care companies.My daughter is 100% health funded, and lives at hone . The person from continuing health care said, as I was the budget holder I couldn't. I then asked if I could employ one of my son's , who also lives at home, and was told yes as long as I went through the HMRC. As my son was a student and not paying tax, felt for a few hours whilst I was working was too much hassle. In the end my place of work allowed me to furlough half my hours, and the day centre she attended provided home support for the rest.

Thankfully it was only for a few months, and day care which is funded through the council is now fully operational, and I am able to work my normal part time hours.

The support through the care companies unfortunately can no longer be offered, and I find myself with a budget I can't use, but still have to do audits for.

[Jofisher in reply to Bergersil400]

It’s ridiculous isn’t it but it’s not the first time I’ve heard this sadly that’s why so many families feel they have no choice but to put them in a care home. We are so short of care staff now added to that covid and activities and day centres being reduced it’s a real dilemma for families sadly.

[Bergersil400 in reply to Jofisher]

We are in the process of considering supported living. There is a new build consisting of 17 individual flats now open, about 20 minutes from us. After transition stage will likely be April before she would move in. We will have to kit it out ourselves, as only a cooker will be provided which we don't mind as would do the same for our able bodied sons.I am also waiting for the outcome of the day centre consultation, which takes place in December. We have had 5 days per week for 5 years and extremely happy with the provision. If it stays open we can use the day centre for 2 days per week when un supported living . If it closes the new build has access to a day centre connected to their other supported living home which could attend for small charge.

My daughter is 26 with severe learning disability and non verbal needing 24/7 support and care. Prior to pandemic we would have kept her home longer at least until we retire.

[Jofisher in reply to Bergersil400]

I know it’s so hard my sons in care chc funded non verbal severe epilepsy autism severe l d as well and cerebral palsy so I feel your pain but you’ve done incredibly well to do what you’ve done. This is a age where our children would be leaving the nest anyway so it’s all very normal and it’s great she’ll be having other peers around and some more independence. Sounds like your making some hard but good decisions all round.

[Pogul44 in reply to Bergersil400]

I'm sorry White25 but I am unable to offer anything useful on your last question.

Hi Bergersil400,

I'm sorry to hijack this thread a little but we have very recently been informed that my adult brother's residential care home will close at the end of Feb 2022. He lacks capacity and requires 24/7 support and care for all his needs. The service may be able to offer a Supported Living alternative which they are checking out and will let us know soon. We therefore seem to be in a similar situation to you in having to consider Supported Living.

I wonder if it might be useful for us and perhaps others if we open a new thread on this so we can info share and avoid hijacking White25's thread. Four years ago we were told that Supported Living would not be suitable for him but I can only imagine things have changed unless we are being naive on him receiving the care he needs.