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More support needed - Carers UK Forum

More support needed

For issues specific to caring for someone with learning disabilities
Regulars will know my LD/autistic adult daughter moved in to a LA flat with her boyfriend in April. she gets a support worker in 4 days a week for 2 hours but the rest of the day is by herself. I see her several days a week and her boyfriend is with her at weekends when not at work.

I know she is not coping when she is alone in the flat because she rings me and her Dad ….. she Just doesn’t know how to occupy herself.

I was alerted by a friend that she has been on a local site and people are getting annoyed with her because she replies to posts and just says one word or it’s gobbledegook. There were some really nasty comments too. My friend posted that she has problems and some people have been fine but others are still saying nasty things and saying she should be reported. I spoke to her on the phone last night and told her to stay off there because people are being nasty or making fun of her but she doesn’t really get it. I also said myself and my hubby don’t want local people reading all this and knowing it’s our daughter.

I am at the end of my tether again because we went through all this several years ago and she promised me she would not go on social media. I have suggested things she can do when she’s alone and bought her adult colouring books, pens etc but she isn’t interested. she has one voluntary job for a couple of hours on one day a week and starts another one for an hour a week on Thursday but all this takes a loot of organising, sorting transport etc on my part.

Social services seem to think she is now independent as she has the flat but she is far from being settled. Also her support worker is new to the job and although she is very pleasant, she is not experienced in working with people with LD. The social worker is just a student too and between them they din’t seem very aware.
Penny,

it sounds to me like she needs a timetable, to help her structure her time. Being home alone is tough - its rather like lockdown!

Social care have not a clue how much input our young people need in a day. Nor that its not just a case of meeting their physical needs. Perhaps you should give your daughter the social workers number and tell her to ring her instead so that she realises the issue.

Setting things up certainly takes time and isn't as easy now we are in this strange coming out of the pandemic situation. Did your daughter do any clubs/college courses etc when she lived at home before Covid? Mencap near us run adapted and ordinary bike riding sessions in the park for example. Does she have a local leisure centre where she could swim and go to the gym etc Can she be taught to travel to places? Does she still have contact with her respite lady? Could she visit her a few hours?

Melly1
Penny, I'm so sorry you are in this situation.
I just can't seem to get SSD to understand and record full details about M.
I'm at the end of my tether, and have now contacted Social Work England about the "fitness to practice" of the Area Manager and the Team Leader dealing with him.
SWE said that they will probably widen their investigations even further.
I've now written what I call a "fishing letter" to the Head of LD in the County. She used to be Area Manager here, was useless, I even had to show her what was wrong with M's personal £100 weekly money management records some years ago. She said they were fine, when I went to see here and showed her, she appreciated that they were on the fiddle!!"
I've copied her endless letters, no acknowledgements, just passed back to the Area Team to deal with, but they don't!!
bowlingbun wrote:
Tue Jun 15, 2021 11:27 am
Penny, I'm so sorry you are in this situation.
I just can't seem to get SSD to understand and record full details about M.
I'm at the end of my tether, and have now contacted Social Work England about the "fitness to practice" of the Area Manager and the Team Leader dealing with him.
SWE said that they will probably widen their investigations even further.
I've now written what I call a "fishing letter" to the Head of LD in the County. She used to be Area Manager here, was useless, I even had to show her what was wrong with M's personal £100 weekly money management records some years ago. She said they were fine, when I went to see here and showed her, she appreciated that they were on the fiddle!!"
I've copied her endless letters, no acknowledgements, just passed back to the Area Team to deal with, but they don't!!
Sorry to read your news Bowlingbun. It’s flipping hard work isn’t it? Last night daughter told me if I discuss her situation with OT or social worker she will block my number! Then this morning she text me several times saying sorry. My husband went round to see her and he says she is really anxious and jittery and constantly swinging her legs and fidgeting and fiddling with her clothes. She told him she has phoned the Housing Association with a list of jobs that need doing including the central heating …… on the hottest day of the year! I can see her getting into trouble with them next.

We both think she should be on some sort of medication but she refuses. 3 years ago the GP prescribed Citalopram (low dose) which replaces serotonin which a lot of autistic people are low on. She has never taken a single pill despite us asking her to just try it for her anxiety. I don’t know what else I can do to help her but she is clearly very anxious when she is alone. She is so desperate that she is ringing anybody she can think of!
Oh dear Penny. I'm so sorry for what you are going through.

Forgive me but was there a reason your daughter moved out? Did you want her to be able to live independently? I'm sure you have posted about it but I am too tired and lazy to check, apologies.

If the support worker is not doing what you think she should be doing or are not experienced with specific issues, get in touch with the manager and ask for them to be changed. The worst thing that will happen is they will say no.

This website you mention, is it like a local Facebook one? If so, try and stop her from going on it or block it. She seems quite vulnerable and the last thing you want is for people to know where she lives.

I know this is counterintuitive but can't she come round to yours during the day once or twice a week? Perhaps you could do things together? On the other days, she could do her volunteering and what not. Are there any programmes she likes watching?

Hopefully this lockdown will end soon and clubs and groups will restart. I know our local authority housing provider does all kinds of clubs for residents for free, like cooking, diy, art etc.

I think it's disgusting that SS have said she is living on her own and is fine to be independent. That's what they seem to do these days. Move people on, tick boxes and close cases. It shouldn't be happening at all.
Thank you “ontheverge”. Daughter and boyfriend were finally offered a LA flat after a 4 year wait. I still seem to be on call for her the whole time her partner is at work. She texts and phones constantly. I collected her this morning before 10 and took her out to a car boot sale and the shops as I do every Tuesday. They also both come to me mid morning on Sundays and then stay for lunch and all afternoon.

She does two little voluntary jobs on Thurs and Fridays which involves just a couple of hours each of those days.

They are having trouble with the people in the flat below who moved in after them ….. they play really loud music and shout and have very noisy sex (screaming etc) and let their 2 kids crash and bang about. The council have now installed noise monitoring equipment because they are both fed up with it. It is making my daughter very anxious and upset and her boyfriend is getting obsessed with it now and not sleeping well.
Oh God, your daughters neighbour's sound like they are related to the nasties next door. I'm glad they have brought it up and the Council are aware of it. Who knows they may even move her to another place, maybe closer to you so she is not on her own all the time.

Is she still getting grief from those people online or has that stopped?