we have a 23 year old daughter with severe autism and severe learning difficulties, she is in the process of moving into supported living. We live in Wiltshire and there is no available supported living here so she is moving out of county. Wilts have agreed 21 hours 1:1 and we have just found out they will not fund any day care they say she will have to self fund this.
Does this sound right, we were quite shocked to hear this. She attends day services 4 days a week at the moment
Thanks
is she funded by continuing healthcare if not should she be ?
I don’t think she is. Will find out from social worker. Would this make a difference? She is fit and well apart from the autism and learning difficulties
If she has a social worker she must be local authority funded I’m guessing she lacks mental capacity like my son. Does she have unpredictable challenging behaviour or epilepsy
She doesn’t have epilepsy but her behaviour and anxiety can be difficult. She doesn’t have mental capacity. She gets really stressed if she’s in the house and needs the structure a day centre brings. Is your son living in supported living?
Residential and funded by CHC my daughter and I are deities as well so we have a legal responsibility for his health and finances I wouldn’t be without it
21 hours seems low. My son has autism and sometimes challenging behaviour.. he lives in supported accommodation, a self contained flat in a care home that was converted to flats. He has 66 hours 1:1 a week and is one of the lower supported people in the block. Some have 2:1 support and some have 15 hour support every day due to their needs, He goes to a day service 2 days a week which he pays for. He can’t go out on his own due to his unpredictability and lack of capacity and I said to the social worker that he needed his 1:1 hours to be able to leave his flat and be part of the community. 21 hours is only enough time for personal care and meals. Are there shared hours as well? There is always support around if my son should need it but there are no allocated shared hours.
Thanks for your reply. She does have other shared hours while in the house but like your son she does not have capacity and is not safe to be out without 1:1 support. I was so happy when we found this house but feel we can’t go ahead. Without the regular structure that the day centre gives she will become anxious and this will fail.
my daughter has also just moved into supported living -her daycare has been reduced from 4days to 2 days a week (funded by council) but have been told to challenge this at the 6 week meeting (we’re in N’ton)
we have been told they won’t support any day care, so effectively her 21 hours 1:1 are the only time she’ll be able to leave the house -it’s more like doing time than living independently.
We’ve been told we can fill in an online complaint form if we don’t like it.
Hope your challenge is successful
for the local authority to fund, I think you need to prove that the day service is an essential part of her support needs rather than a ‘desired’ activity? If she’s been attending for a long time and it’s part of her daily routine and structure it seems very unfair for that funding to be taken away. Just wondering if you could get some independent advice? Eg. Advocacy service
I can’t paste a link here but look up ‘Wiltshire Advocacy Service’
Thankyou I will do that.
HiWe had same issue with our daughter. She is 100% health funded and prior to moving into supported living 18 months ago she had 5 days day care every week of the year for the 6 years she attended.
Her supported living was in the same county but a 20 minute drive away. Continuing health care allowed her to continue in her day care facility for 4 months in other words during the transition stage. They also provided taxis with an escort to get her there and back. The day centre was closed around 7 months later along with around 8 others within the area. We knew this anyway. However we were hopeful she would still get day care outside her supported living facility, and asked continuing health care if they would fund 2 days per week at another day centre within the area. She was turned down on the basis staff should be providing suitable activities within the community, as day care was in short supply and reserved for those still living at home.
When we explained the supported living facility no longer had a mini bus to take residents out, and she didn't have her own vehicle, they made a compromise and added a further £100 per week to her budget to pay for taxis , bus fares or petrol if using own cars. This would be 14 hours of 2:1 hours. The rest of the time she is 1:1 funded. She still gets out during this time but more likely for short walks in the community. Any additional costs for admission to attractions would be met by activity money we provide weekly. It seems to be working. However she comes to us Thursday evening to Sunday evening where she also attends activities.
Good luck with the next stage. Hope works out for you.
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