post 18 what is a parent's role

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Hello,

I hope it is OK just to ask for some general advice. I just felt this was the place where I could access advice and opinions from people who may have experienced a situation similar to mine.

In May, my son (18) went into a small home for adults who are 'recovering' from mental illness. I think the plan is for him to spend 6 months to two years there and then transition to more independent living. He was happy to go and we felt he would benefit from the care he would receive.

However, I am a bit confused abut my 'role' and I feel as if I am, in some way, losing contact with him.

For example, meetings are held about his education or his care and neither I nor his father are informed about these. We have not seen any care plans or support plans. I know the names of his key workers and have spoken to them, but I have always had to initiate contact.

My son has ASC and is not too good at keeping in touch, and when we have managed to contact, he has sounded anxious and his processing seems very delayed. I have contacted the home about this and they assure me he is fine and participates in activities well.

My question is, what is a parent's role once their adult (over 18) son or daughter goes into residential care?

Thanks
Does he return home for weekend leave?
Did you visit the home. With him?

Who arranged for him to go to this place?
When did you last visit him?
ASC = Autistic Spectrum Condition?
Can you tell us a bit more about how this affects him? Does he have learning difficulties? If so, has he had a mental capacity assessment? Who is dealing with his benefits?
Why don't you offer him a holiday by the seaside?
Janet_1601 wrote:Hello,

I hope it is OK just to ask for some general advice. I just felt this was the place where I could access advice and opinions from people who may have experienced a situation similar to mine.

In May, my son (18) went into a small home for adults who are 'recovering' from mental illness. I think the plan is for him to spend 6 months to two years there and then transition to more independent living. He was happy to go and we felt he would benefit from the care he would receive.

However, I am a bit confused abut my 'role' and I feel as if I am, in some way, losing contact with him.

For example, meetings are held about his education or his care and neither I nor his father are informed about these. We have not seen any care plans or support plans. I know the names of his key workers and have spoken to them, but I have always had to initiate contact.

My son has ASC and is not too good at keeping in touch, and when we have managed to contact, he has sounded anxious and his processing seems very delayed. I have contacted the home about this and they assure me he is fine and participates in activities well.

My question is, what is a parent's role once their adult (over 18) son or daughter goes into residential care?

Thanks
Your son is still your son. A home should still involve you in best interest and decisions making. As you son is an adult he also has to be asked does he want family involvement.

Try CQC
http://www.cqc.org.uk/

Who should put you in right direction.
My son was brain damaged at birth, can't read, write or do any maths, but can manage in his own rented flat very well. I am his DWP "Appointee" so I deal with all his benefits, and I find that gives me quite a lot of influence - which is why I asked if he'd had a Mental Capacity Assessment. Are you sure he's getting all the benefits he is entitled to? If in doubt, ring our Carers UK helpline, they're brilliant.
Hello,

It is a complex situation. My son really could not stay at home because there were issues between him and his younger brother (16) and this had led to involvement from social services. I visited two residential homes with him and we investigated Shared Lives provision, but these placements could not take the risk (he had mental health issues and his behaviour had led to arrest and sectioning). His Adult Social Worker found the current placement when my son reached 18 and my son went to visit the home with him. My son liked what he saw and I was happy to let him go (it is in the next town to us). Due to the situation at home, everything happened very quickly once funding was agreed, which also happened quickly.

I helped my son to move and phoned and texted him on a daily basis. However, I did not think it wise to visit too often for the first couple of weeks so he could settle in. Since then I have visited the home once a week and taken my son out. We cannot go to my house for Child Protection reasons and because I do not drive and the journey by bus would be too long.

I have talked to members of staff about how my son is progressing and the assurances I get are that he is happy and participating in activities. Yet, I took him out yesterday and his processing was really slow, he was obsessing about numbers and he seemed distracted by thoughts. His teeth also looked quite yellow and his hair was unkempt.

I phoned the home today and asked who was responsible for making dental appointments e.g. me (as parent), my son or staff at the home. The member of staff who answered the phone told me that he did not know who was responsible (because he was new) and offered to speak to my son's key worker to find out and this person would ring me back. After a few minutes, my son phoned and told me that he did not feel 'well' enough for a dental appointment and he was stuttering and his processing seemed really delayed.

After we had spoken, I phoned the home and voiced my concerns about my son's mental health. I spoke to a member of staff who was very reassuring and promised to pass my concerns onto my son's key worker. No-one has phoned back.

Re finance, on one visit, two weeks ago, my son was wearing trainers that were taped together with insulation tape. I bought him a new pair of trainers and gave him a considerable sum of money, insisting that he used some of it to put credit on his phone and texted me now and again. When I saw him the next week, he was wearing some old trainers that he said his key worker had given him. He told me he did not wish to wear the new trainers because they were 'unlucky' (something to do with his number obsession). I talked to my husband about this and expressed my concern. I know PIP stops after so many days (28 I believe) and I wondered what had been arranged about finance. My husband said the member of staff that he talked to on the phone was off hand and told him everything was being worked out.

Now, it may be that at 18 with mental capacity, my son has every right to make his own decisions e.g. deciding not to go to the dentist, wearing shabby clothes and not bothering much about his appearance. However, I think his mental health is not good and, if so, staff need to be honest about this and perhaps prompt him to take care of his health and hygiene (he smelt strongly of sweat yesterday).

The home costs Adult Social Care and Health £1,200 a week and it is a well kept and spacious place. Yet I am worried about communication between the provision and us, as parents and I am becoming slightly concerned about the quality of care he is receiving.
Who was managing his benefits before he moved into the home? DWP always prefer a relative to handle someone's money for them, if they can't manage it for themselves.
There should be a formal mental capacity assessment if in doubt, although the presumption is generally that someone has capacity unless there is good reason to doubt that.