ADULT LD DAY CENTRES

[Tracidu]

Hi, my sons daycentre hasn't been open since March 2020 , he has had no support from them except zoom call witch he won't join in, he has very little speech and understanding and is challenging behaviour

I have had a letter from them yesterday to say they will not be opening for the forseable future to protect staff . I was wondering if this is happening in other areas?

I have heard of other day centres opening .

I am constantly worrying about my son, I feel LD adults are always way down the list of priorities through the pandemic . I don't want to put anyone in danger but watching football and Wimbledon I am confused as to why his daycentre can't open up slowly with a few clients a day ? Even one day a week would be OK, he used to go out in the community with the staff so he's not always in the building.

His mental health is a concern as it is just me and him , I contacted SS and they weren't helpful , I was told its up to the Centres , They are still being paid for his one to one care so as to keep the daycentre open for the future ..

...I hope I am not coming across as selfish , I just want to know if anyone else is having the same problem .

[49Twister]

Your definitely not coming across as selfish and I have said from day one of this crisis that the LD are way down the list of priorities. My son doesn’t use day centres but I have heard some people mention on here that they are open in some areas. They could meet up outside during this nice weather now and again for a couple of hours, so they could see their friends and have a picnic at least. Why can’t they think outside the box, I’m all for protecting the staff but this seems a step too far, they will probably be going about their lives as normally as possible. Don’t really know what to suggest it’s just a dire situation and seems to fall on deaf ears. Take care

[Jofisher in reply to 49Twister]

It’s a nightmare situation could you get a personal health budget and pay family or friends or employ carers do take your son out etc. Speak to Mencap helpline as well to see what they say and they maybe able to suggest something we haven’t thought of.

[Jofisher]

I can’t imagine what families like yourselves are going through and your certainly not being selfish. Have you spoken to the carers association for some support and shouldn’t your son have a package of care himself or is he deemed to have moderate L.D.

[Tracidu in reply to Jofisher]

Hi , thanks for your reply, My Son has severe learning disabilities , is severe speech and language disabled , Challenging behaviour, OCD and can self harm . His care plan includes all of this , this is the reason the daycentre insisted he had to have one to one support at three times the cost of normal daycare , he is 36 yrs old and lives at home with me . The staff in his daycare facility don't care that he is at home , They sent an envelope witch they put through the letter box , didn't wait to say hello to him , it included word search and suduko, he can't even hold a pencil or read or write . I would give anything for him to be able to do these things but he can't and it just leads to more upset for me . My Son is always happy to see people and they always say they enjoy having him . I just feel SS are letting them get away with keeping the centre closed and given no thought to the clients . The staff seem very happy on zoom but it's of no use to my son .thier answer is they can't do anything about the situation. It upsets me to see men of his age going out and enjoying life , I know its not an inclusive world and reall believe it never will be for LD Adults .sorry if that sounds negative but after 36 years of caring I'm not very optimistic as I was when he was a child . Not all LD adults are the same .Thanks for listening to my rant , I just feel a bit lonely in all of this and so sorry for my son . I'm not usually like this and have fought for him all of his life. .

[1946timmy in reply to Tracidu]

My son is 44 Autistic and Epileptic he has 1-1 support at his daycentre.His daycentre also offering a lot of zoom activities which are totally useless to my son.

Last year when the schools reopened I expected the daycentre to open on a smaller scale, but it didn’t. I emailed the senior management and then spoke to our service manager.I told them I was disgusted as they had neglected my son as what they offered was not suitable and his anxieties were much worse.Soon after that they did let him back in going a few things , I thought they perhaps would offer this to quite a few people for maybe fewer days but it was just my son for 5days.The same thing happened this year when things were opening up earlier this year I had to BEG once again, but he went back to the daycentre , now there are a few more in , but nothing like it was.each conversation i had I was in tears, as you will understand it’s very emotional dealing with our sons at this time and having to fight to get support is very stressful.All I can suggest is trying to talk to those in charge and tell them other places, I’m in Surrey , are open although on a smaller scale, staff here are still wearing masks, checking his temp and sanitising hands. It seems ridiculous now to still be closed as you would assume most staff will be vaccinated as will a lot of those needing support. Do you have a Carers organisation as they may help with advice, I told them there were not fulfilling there legal obligation to people with a severe need .

I totally understand your stress and worry and it’s awful having to fight to get some support for you and your son.

[MFrancis71 in reply to Tracidu]

Hi I’m in the same situation as you my daughter is 33 and has always been at home and honestly I don’t think there’s a week gone by I’m not in floods of tears. It’s been a nightmare there’s no explaining to them what’s happening because they don’t understand, that leads to them getting frustrated and angry and taking it out on us, we’ve also had things sent like puzzles etc that are absolutely useless I just wanted to say your not alone I just don’t get why some activities are back up running safely and others are still refusing to open its so frustrating😡

[Tracidu in reply to MFrancis71]

I know exactly how you feel, I have shed many tears over my son .One of the day centres has opened , he started off at one day a week now he's back to his 2days ,he gets transport as its not in our area .

His main daycentre is still not opening, they say its incase staff get pinged? I recieved a letter to say when they do reopen it won't be as we have known it before? , they are going to be job centred training, as much as I would give anything for my son to be able to work its not possible , in his 36 years I have been down every path and never turned down any opertunity for him even though there has been such heart ache when they send him home as he hasn't got the capabilities. I suppose everyone tries to re invent the wheel and think they are the first to try but I know it's not going to happen for my son . I don't know what is going to happen and as its the only daycentre in our area and he has been going there for 14 years because I wanted a building base centre for him and not just wandering around with carers as I often see . They have offered him one hour a week walk which has been more Iike 40mts but have no idea if and when they will open up again . I hope your daughter gets her daycare back soon , I really feel for you both . Take care

[Iolo]

Hello.

Your situation really surprises and saddens me. In our area council run day centres are gradually opening and the independently run centres have been running for a while. All with safety measures of course but there is a general recognition that the opportunity is invaluable to adults with learning disabilities especially those whose families receive no other support. Is your son getting any other support other than what you provide as a family? His needs have not gone away so is entitled. Also I would argue they may be increasing given the impact of not being socially occupied could have on his emotional well-being. Are there any other day centre options open to him as there are a couple in the area I live in? I would be requesting an urgent social care review to have his unmet social needs recognised. I realise it is never that easy because as you say people with learning disabilities continue to be failed despite all of the national campaigns and recognition by certain politicians. Gosh your post makes me angry and sad for your son. I am sorry this is what he is facing.

Just as an aside have you looked into any online activities. It’s not everyone’s cup of tea but for some it’s been a great way to stay connected.

[helenmos]

I have found some are able to and some just can't due to the actual day centres one of them I know is a room with no windows and inadequate ventilation so they would not meet requirements and would be unsafe, and they consider it not to be financially viable, so they are doing zoom sessions I agree they not suitable for everyone and if you are unsuccessful in getting on them, it can lead to anxieties

[MichelleMencap]

Good Afternoon Tracidu,

Sorry to hear about your troubles with the day center. If you could contact the Mencap Learning Disability Helpline by filling out this web form here: mencap.org.uk/contact/conta... one of our advisors will get back to you. You could alternatively call the helpline between 10am and 3pm on : 0808 808 1111.

[kiceman]

Hi Tracidu,You are not alone with this problem. Our daughter with LD is a user of day centre in Slough and we have them closed since March 2020 too. More so the Slough council is looking into "alternative arrangements", which are not "building based". This simply means that they planning to never reopen them. Mencap can offer some help in places and we got in touch with our local branch but really councils should fulfil their obligations of care for vulnerable adults requiring day care and reopen them immediately.

There is an online petition on Slough council's ePetition portal for local residents. Check this up: democracy.slough.gov.uk/mgE...

I hope this is not as bad in your area as it is in mine and your centres will reopen soon. Good luck and take care.

[Tracidu in reply to kiceman]

Thankyou Kiceman, I have just read your petition, this is so worrying for all LD adults that use building base daycare. I rember they tried to do this in my area , Essex , a few years ago , it didn't go ahead for my sons place but it seems to be happening now ? His building was big but it was taken over by a new company who opened it up for the elderly and other groups so now they are saying there isn't enough room to accommodate LD so they are going down the training for work route which will be no good for my son , I have only spoken to a member of staff as the manager has now gone , so I will just have to wait to hear in person ?

I really do not understand the way the social care and councils make these decisions for our Adult kids . I hope your daughter 's place opens up for her soon .