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[ExistingonCoffee]

A thread for all who have DC with SN. The thread is deleted and 90 days and doesn’t show in active. The fire is on and the bar is well stocked.

@Squirrelsandhedgehogs i have 2 planning permissions that I have done nothing with due to future planning and worrying and cost/benefit thinking. Your DS has already chosen his spaces, your ground floor bathroom and the shed. Improving those spaces will be valuable to him.

I’m not sure you need planning if it’s a temporary building like a shed. What about a hay bale house? They’re really cheap and warm, though you’d need a carpenter for roof etc. I think they are beautiful as I’d cob though the mud might drive you bananas during construction. There are lots of kit houses/home offices available on line.

He is shifting his territory as we improve house and garden but he is clear on what he uses, we have to guess why but it's normally obvious. I don't know how long we will live here. We all love house and garden and village but hate being by his old school. Hospital is great. It maybe we move when DH retires. Though could be we stay long term. We have money but need to be careful with it and economy and world events look bleak. I need to do cost / benefit analysis for DS, for financial and for us as a family and see what permissions we can get and what quotes. I wish DS would tell us. It's useful to run past DD as well. She is keen on bedroom and bathroom projects, mainly to get laundry room, doesn't care about shed. Can't believe she's nearly finished two years at university. Financial I probably won't work again, in theory I am fine financially but did not bank of any of these projects and inflation may skyrocket. Not overly concerned.

Thanks @ZairWazAnOldLady as we are listed and conservation area anything other than like a tent needs permission. Even cutting the trees needs permission. There's about 13 forms now.

Hay bale looks interesting though silkies may eat the house. 🤣

Have managed to have a quick chat with DH about the projects. He's always been keen on the bedroom one, bathroom he has come round to and he also told me the plumber had called him, one who did our kitchen and were very good if slow and he's coming round in 2 to 3 weeks to quote and service boiler. Shed, he's less sure about but we've agreed no water or waste as potential to cause damage is too high and might also dig up garden and will add further to costs. DH isn't sure about electrics but thinks it would be minimal impact on garden. I think electrics could be good but not sure of WiFi as may cause him to relocate and game but that's not a big issue either way, can decide later. We will have to see with finances. We want a decent quality shed as planning permission required but have to balance risk of him damaging it / shortening life expectancy with cost. DH also wants to see a shed. I think I might get an online meeting with them. I don't think we need Aircon as current shed in shade and never gets too hot. Electrics would allow a heater. DS normally won't use heaters but would love electrics to plug in iPad. Also gives a light though DS does not like lights. We have the money but in my case I would need to recover it on house sale as it's money for retirement. If we can get bedroom project approved that would get money back and then bathroom would add value. But shed may not. Potentially could use DSs UC / PIP for shed but it's difficult with him not being able to consent and the very high price. Currently we have just used it for things he has damaged and his sofa bed. If we do that may need a second smaller shed for our garden and chicken stuff which will also need planning permission as listed so need to be certain what we are doing. Looks like bathrooms need building regs too. Not sure if need to check with insurance re electrics in shed.

@Squirrelsandhedgehogs if DS has an appointee, you don’t need DS’s consent to spend the money. The appointee is the one responsible for spending the benefits on behalf of the claimant in their best interests.

Yes we are the appointee for DS thanks.

I think a garden room for a young man who can’t yet go out and who is stressful and stressed within the home is very much in his interest. Have a look on Google maps and see what else has been put up in your area. This is a good solution for everyone.
I agree that it’s awkward using pip/uc for someone else. I tie myself in knots about it. It would be SO much easier if ds’s money was just part of the household pot iywim.

Thanks @ZairWazAnOldLady Yes I find it difficult to feel OK about spending DSs pip / UC at times though the use it or lose it UC rules help and I have explained that to DS. DS hates spending any money ever which makes it more uncomfortable. Am happy with what we have done to date and have an Excel file detailing every transaction ever.

I think all 3 projects would be good though I checked my finances and think we can only finance one per year. When I looked at the figures we don't necessarily need to get money back on house sale but equally don't want to waste money. I think DS is fairly relaxed now when its just us in house and he's downstairs but upstairs is stressful for him and he loves garden and shed. The shed and downstairs bathroom give him maximum privacy which is important at his age. The shed is also a safe space if people come inside house, he uses it like a summerhouse.

The other issue with PIP/UC is currently his PIP goes to June 2027 but a review in June 2026 so not sure when it could be cut off from if there's an issue. He's well over on criteria but I would be a lot happier spending money once/if we have it approved for a new period. I think he needs things downstairs or in the garden for accessibility.

I don't know if there's any point in trying for DFG - the bedroom would be a waste of time applying for as DD finishes university in a year and her room is huge. He won't use that room and is unlikely to use a bedroom upstairs which is only option. Bathroom he does really need his own and for it to be downstairs due to flood risk from him and water. We also need it as tiled as possible due to flood risk. He needs low lighting and bath. I think he also needs to be able to get out quickly in case of fire and we are thatched and also if his catatonia came back to his walking we would need to carry him out. He also gets mud everywhere when going upstairs. Downstairs toilet and sink he covers in soil and blocks sometimes though not recently for blocking. He covers washing machine and drier in soil which can cause flooding so we ideally need them out. Garden room / shed give him safe space, access to garden, quiet low lit. It seems to need an OT report and sounds like a private one is best though not sure if its a waste of time applying and how to get private one. Seems to be slow and need him / us to stay for 10 years, or maybe him 5 and us 10. Not sure if you need to be under social care, he goes mad at social care and refuses consent.

There's sheds in almost everyone's gardens here big ones and some thatched cottages have like small chalets in garden so think we would get planning for that. Downstairs bathroom is already a bathroom its just moving plumbing and adding a bath and moving washing machine and drier, can't see there will be an issue with that. The bedroom / stairs is the one they are saying no to but we need it to make it to a family home.

Just to clarify in case it has been misinterpreted, I wasn’t saying something wasn’t in DS’s best interests, I was just pointing out consent isn’t required and the apointee’s role is to spend it in his best interests.

You don’t have to be receiving social care support to be eligible for DFG. Although sometimes social workers are involved in the process. Even if you get a private OT report, the council is likely to seek the views from their OT as part of the DFG.

Thanks @ExistingonCoffee I did read it like you are saying though it always worries me what if someone later decides it wasn't in his best interests. I don't worry too much about that as we can move money around. I just like to have the correct amounts allocated to everyone.

It also may affect what shed / garden room we buy, from DSs funds it would be ones that are c£5k and more basic, if we wait and finance it we could get a more expensive one but maybe in 2028. If we can get DFG might be able to get a bit earlier. It says social care are involved in assessment which is fine as long as they don't tell DS or if they do be prepared for the fallout. I think we might stand more chance with private OT and it could be we can use report as PIP evidence.

I wouldn’t worry about anyone thinking you aren’t spending the monies in DS’s best interests. An appointee would have to be seriously abusing the money for officials to think and act that.

A DFG is far, far more likely to fund a bathroom than a shed/garden room.

Could you take a loan and use uc to repay it slowly over a few years so he could have it now?

Thanks @ExistingonCoffee that's useful to know. We may stand no chance but I will look into it further and discuss with DH. I have messaged a private OT company and they have quoted £990 to £1300 for a report but we need to discuss with them if they can do that without DS consenting / being very involved. He may let them watch him on a home visit if they can do that. He might just not object if its for things he wants. Though whether we will hit an issue with NHS one with lack of consent I don't know. A report might be useful anyway to have evidence for 2026. Somebody told me they had a child like DS (think it was like DS pre hospital and much milder tbh) and they had success with a therapist who dealt with brain injury. DS might, very small chance, respond to a non mental health framing though OT in hospital had no success. If we could get DFG for even part of one thing it would help though expecting to be rejected.

Do any of you have motability cars with black boxes? We have one driver under 25 but I’m wondering if we need to have him on there anymore as he’s away most of the time.

We should do but the girls' cars don't yet. I think it's possibly because they have provisional licenses.

Does DS have mental capacity? If he doesn’t, I don’t see how the NHS can object to an independent OT report? Just say, you were acting in his best interests.

DD1 doesn’t have mental capacity, and there are best interests decisions about her all the time. We often say, we did x,y and z in her best interests. I asked a barrister in a workshop about it. We had been given 2 choices by the SEN dentist for treatment for her. Both could have gone wrong and she could have ended up dead. I wanted to know, if I would get blamed for her being dead. She said no, so long as I could explain why I made the decision I did. Anyway, that’s not likely to happen over an OT report!

I spoke to a manager at the care agency today. After telling them I didn't want care going forward, they still sent a carer out (who I sent away).

She said that the carer was trying to mirror DD1's lunch choice by getting KFC because it was the only place that sold wraps (we should probably ignore the huge Sainsbury's that she passed to get to KFC), and in any case, the carer shouldn't have had to buy lunch to eat with DD1 (she didn't have to) and should be allowed to choose what to eat. Also, she had no money with her so felt awful despite the fact that she took DD1 into a butchers so she could buy things for herself on DD1's time, and was going to buy KFC.

Our dogs are 'energetic' although do settle, but it's completely reasonable that knowing we have dogs, they send people who can't be in the presence of dogs.

It was a complete surprise to them that DD1 would want to go out, the carers don't take people out (despite telling DD1 that they should do swimming together regularly) unless they use a bus or train. We live in a rural village with 1 bus per hour to a town. The nearest train station is 4 miles away for a sporadic service, with no bus route, or 8 miles away.

It was completely unrealistic to expect a care worker to want to do 3 hours per day and it should have been at least 5. Social Services set them up to fail except that they chose to bid on the contract. It's also completely unrealistic to expect them to be able to occupy DD1 for 3 hours at a time (note contradiction).

It's completely normal to have a carousel of carers with frequent changes without notice.

The two younger carers are devastated because they really care for DD1, despite meeting her twice, and are wondering where it all went wrong.

Cry me a river.

On another note @ExistingonCoffee do you have any suggestions for ASD friendly specialist colleges that are commutable from where I am, which have animal care options?

DD2 went to a taster evening for the mainstream college they've identified and found the number of students quite overwhelming, despite TA support and my presence. I'm not sure it's realistic.

Wow excuses worthy of a politician. Seems that sacking that agency was the right call.

DD1 used to get a care worker for 8 hours a week initially. She had regular clients, so I had to book her for a few hours here and there around her existing commitments. She used to take DD1 out in her own car. Nobody uses public transport where I live.

No, there doesn’t have to be a carousel of care workers. I came across care workers, who had spent several years just looking full time after one client. The last few years, DD1 was in education, she had just one care worker in the school holidays, who worked as a LSA in education in term time - because she got on very well with me and DD1.

I have come across every permutation possible in my experience of care workers since 2014.

It varies @BlueandWhitePorcelain whether they deem him to have capacity or not and think it goes on what suits them at the time. He was very intelligent and would say still seems to understand at a high level, its the lack of communication but if its a yes / no thing and he acts hacked off they said last time he had capacity to refuse. But before was the same and they said didn't have capacity as wasn't making the decisions they wanted him to make but that was as a child. I will see what the private OT can do if anything. Every report I've had on him here funded by our council has said they can solve everything for 50p and half a day's training.

"Every report I've had on him here funded by our council has said they can solve everything for 50p and half a day's training."

Must be London rates. 25p would be seen as extortion here.

@Lougle the agency live in a parallel world.

I’m not sure there is a specialist college local to you who offers animal care and could meet DD2’s needs. They would all be too long a journey &/or not the right place, I think.

Boveridge would be a very long journey, and IMO would not be suitable. DD2 would not cope.

Fortune would also be a very long journey, is equine focused and I think DD may struggle.

Fairfield would be even longer. They have an animal care centre, but it isn’t an autism specialist college and I think DD would find how some of their cohort present overwhelming.

@ZairWazAnOldLady DS2’s car has me, DH and DS2 on the insurance so will eventually get Smart Drive but we haven’t yet heard anything yet. I called thinking it had got lost or something but no it is just taking time. Although like Lougle’s DDs, DS2 has a provisional. We have an open policy for DS1’s vehicle and at the moment they aren’t giving Smart Drive to those with open policies. DS3’s car only has me and DH on the insurance so doesn’t need it either.