Badly need help for my son, This is how he is being left, pictures included.

[needhelpbadly]

My son suffers with mental illness, autism, paranoid schizophrenia, ocd, anxiety and he is behind his actual age by around five years, he is 21. He lives in a flat, and has a "support team" coming 6 days per week to make sure he is keeping his flat tidy, paying his bills, cooking, etc, he is paying £300 per month for this service. I have included some pictures of his flat since the support team have been coming in.

We have also discovered they have not been helping him pay his bills and he owes approx £1000 to his energy suppliers, £100's to his internet supplier, etc

We did try to get him into supported living but they put him in a flat instead, we knew he would not cope living independantly and this is the result.

Before he had support coming in family members helped clean his flat, pay his bills, order his medication etc are we were under the impression that since he is paying £300 per month for this service that we could then step back a bit and let them do their job.

He is not eating, any food he does have in is mouldy, his bills are not being payed at all, he is peeing into bottles and defacating on his floors and we have no idea how to help him anymore.

Are we within our rights for refusing to pay for this support?

Can you get the energy bills to be paid by direct debit, so that’s one less thing he has to worry about.

Regarding medicine, can you get them put in a dossett box so he knows what he has to take when.

The poster above makes a good point that £300 actually equates practically for an hour a day. How much input are they supposed to have? If they see he has food, they could be fulfilling their role? Have they had clear instructions as to what is expected, although I agree they could make the flat tidier.

Did he let you tidy the flat when you went in and took photos OP ? He might find it quite intrusive having lots of different people coming in daily especially if he is mentally unwell at the moment. Some of those people might be better than others at engaging with him.
What does he think about the people coming in ? What does the care agency say about his behaviour, is he refusing to allow them to do certain tasks, is he abusive to them, refuses to engage with them ?

If he isn't taking his medication then this needs to be addressed urgently as he will become more unwell without it, how many times a day does he need to take it ? I think you need to contact his mental health team, his GP and his social worker if he has one and explain this, send one email and copy them all in. This is far more important than the messy house and the mess will not be resolved without the medication issue being resolved first.

Good luck OP

This is heartbreaking. I also worry about my son with the same when he gets older. :(

Before you speak to his social worker or mental health team brush up your knowledge of the mental capacity act. There are certain criteria that have to be met to prove capacity and actually if applied correctly the level of understanding of a situation is quite high. As an example regarding the mouldy food he should be able to have a discussion about the risks and consequences of eating mouldy food, talk about how this may cause food poisoning and make him very ill. A capacity assessment is also 'decision specific' which basically means that an individual should have their capacity for different aspects of their life assessed. It's very easy in this day and age for people to jump on the bandwagon of 'he's got capacity to make unwise decisions ' as this justifies doing nothing (and I say that as a mental health nurse looking forward to retirement after 34 years !)

I am so sorry your son is in this situation, it sounds like he is being seriously failed by health and social care. Do make a safeguarding alert to adult social care as from what you've described, the care team are not delivering the support your son has been assessed as needing. They are neglecting him, and it's possible he may also be self neglecting. This should help to trigger a review of his care and support needs, and an investigation into the conduct of the care team. Please also keep in mind the power of making a formal complaint and approaching your local MP about this.

Sorry to see you are going through this OP, as a family we have been through similar, and it's heartbreaking and frustrating in equal measure. The crux of the issue is he isn't taking his medication (which isn't his fault, it is extremely common and not surprising if you feel paranoid), and it might be that he needs a more intensive level of support for a bit to get him back on an even keel. As has been mentioned, changing to a medication which can also be injected might be an option, outside of sectioning you cannot force an adult to take medication, but in that environment that can get them back on them, and the monthly injection can be enforced by a court order in the future if refused. I know it sounds scary, but honestly the difference is likely to be astounding. This is conjunction with a care coordinator etc should really help. There is an expectation that family do a lot, but it's not always fair or possible. It's obviously up to you, but I would be tempted to contact the crisis team. The level he is recieving now isn't sufficient, and it's likely not the fault of those who come in, but they are bound by rules regarding consent (rightly) and can only do so much in a limited time.

This is appalling. I'm afraid I don't know how the system works but I could cope watching my child live like this. Can you not pay all his bills to take away that problem.

Could your son move back home with you for a short period while you sort this out?

Also as has been mentioned they can only pay bills with his consent, can you get him switched to a PAYG electric and gas meter (if you're confident someone would be able to top it up for him regularly)? Usually utilities companies are able to talk to realtives if they explain, and can often send the slips which you take to the post office or a bank to pay, which can be paid in by anyone. Not ideal, but power over adults is limited, which is good on the whole but the offset is scenarios such as this.

I haven't RTFT so please correct me if you have addressed any points.

I work as a support worker with care leavers 16-24 both in supported housing (own room with shared kitchen/bathroom) and outreach work with those who have moved to their own accommodation.

Many of my clients have mental health issues and learning difficulties. Because of this it is often very difficult to work with them and actually get things done which are outlined in their care plans. I have run budgeting workshops/given one to once budgeting advice with many clients who refuse to pay bills or rent and tbh there's not much they can do if they do not have full control of their finances.

For example, one of my clients has been paid over £1000 from UC and the following day when I came to pay his rent and sort out his budget for the month he had withdrawn it all at the bank and said it had gone. In cases like this there is absolutely nothing I can do.

Many of my clients also live in similar conditions to your son (some MUCH worse) and I'm often left knocking on the door for ages because they refuse to let me in. Social services still pay the company I work for for these services although technically so work has been done.

I think it really depends on your son and his cooperation with the services. Obviously I'm not blaming him and there is a chance he has shit carers but I just want you to seen it from the other side.

Does he have a social worker?

My son has a similar combination of autism, schizophrenia and anxiety, and has been sectioned several times and spent some time in supported accommodation.
The first thing I wanted to say was that Hatgirl's post seemed to be full of excellent advice. If I was in a similar situation at the moment I would follow her suggestions.
I have been in quite similar situations in the past, situations in which it is utterly clear that my son is not coping, but we have to nag and pester and wait and wait for the system to kick in.
It may be that the support team is terrible and not doing its job, but equally it could be that they are doing all that is possible and he is refusing to cooperate and give consent for necessary things to happen. Also, depending on the details of the support package, it may be that their role is not to clean but to help him self-organise.
If that isn't working out, he urgently needs a reassessment of his care needs.
To be honest, those photographs don't look like good evidence because many well or 'coping' people might live in that degree of mess. So you need to focus on the urinating and defecation, the non-payment of bills and his delusional and suicidal state. Those would seem to be severe enough issues to warrant an assessment to determine whether he should be sectioned under the Mental Health Act.
I'm sorry you are going through this. We had periods where my son was almost killing himself by taking recreational drugs, on top of everything else, and the mental health system was holding back because until they could really determine that he lacked mental capacity, they couldn't justify denying him the autonomy to destroy himself.
Is he under the care of the community mental health team? Keep calling them every time there is heightened concern - for example if he talks about suicide or if you find new evidence of defecating on the floor. That will help to build evidence of his inability to cope. And take the actions that Hatgirl suggests.

'Also, depending on the details of the support package, it may be that their role is not to clean but to help him self-organise.'

Yep, I've done care work and we didn't clean- cleaning was provided by others and cost extra. It may also be that they're not allowed to interfere with his things too much- either by his choice or because he's treated as an adult, i.e. he might want his boots there rather than somewhere else etc.

'To be honest, those photographs don't look like good evidence because many well or 'coping' people might live in that degree of mess. So you need to focus on the urinating and defecation, the non-payment of bills and his delusional and suicidal state. '

Absolutely. I have some mental health problems and stuff and my house isn't the tidiest. It's not deemed to warrant any intervention if a house is untidy, otherwise they'd have to clean and tidy for tens of thousands of people per area or something. I imagine a lot of people esp with mental health problems and stuff do have ash trays like that.

But the urinating, defecating and paranoia etc are important. A PP is right that if he took his meds regularly it'd probably make a big difference, and an injection might be the key. The PP who mentioned pre-payment meters had perhaps a good idea, as long as someone made sure he had enough electric etc.

I would keep trying to get through to his crisis team.

If you're not happy with the level of care, you could try employing your own carers/cleaners instead. You could look into direct payments, if you haven't already www.gov.uk/apply-direct-payments Of course all of this depends on how willing he is to work with you and the carers etc.

I agree with the PP who said sorting out his meds should probably be top priority- then he might stop doing half of the worrying stuff. I can only suggest you keep ringing the crisis team and so on.

It must be awful.for you. :( :( :( Hugs xxxxx

Would he want to come back home and sort his finances out and get his MH back under control. My brother has learning disabilities and is an owner on their mortgage again I appreciate all conditions are different x

He has been assessed and has a personal budget from the local authority...if he is unhappy with the service he is receiving from his current provider, he can use his personal budget in any way that meets his assessed needs, he can ring adult social care and ask them to give notice on the provider and seek a new provider or request a direct payment so he can employ someone himself..as someone has said previously ask him for his consent to support with the situation and speak on his behalf, then ring adult social care and ask for a duty visit from a social worker...I'm presuming he has been assessed as having mental capacity in regards to their accomodation, support and finances (because he is living independently and doesn't have an appointee) I would query his executive capacity with the local authority, executive capacity is often overlooked and in many self neglect situations has initially been perceived as an unwise decision, I say this because he was accepting of his support from his family but the service provider is not working out for him...if he is deemed as having mental capacity for his finances a service provider can only offer support to him to go and pay his bills if he says no then they have to take his instruction, same for cleaning and any other daily living tasks...when he says no, its perceived as an unwise decision...I hope you manage to get him the support he deserves (I personally would also be contacting the contracts/commissioning council department to complain, if your son gives you consent, that the service provider had not alerted adult social care of the situation sooner)

Can’t you help him clean? Couple times a week.
Put all bills on direct debits?

I think if he is your son, and he wants to/ you want him to live independently, you/ family need to pick up the slack as social care wont pick up all his shit. Noone does that for anyone

Can you apply for power of attorney for him? That way you can manage his affairs on his behalf. Which it sounds like he desperately needs. Especially to stop the financial issues escalating further.

Can he really care for that cat when he’s so unable to care for himself?

I look after a man with adhd and his house looks a lot like this!
We go in for an hour once a day to tidy sort out fridge etc. We bust out gut trying to make it look presentable. I went in once and I had social services with me and left that place looking spotless, I had to nip back in to drop off some paperwork, was gone a couple of hours, it looked like I had never been there. I was gutted.
I had to ring social services back to come out and look at the place whilst I was there as they were reporting wernt doing our jobs properly.
They key is to go in just after the support team have been in to see if they have done anything.
Does he have a social worker you can call? You can discuss the care team with them but please check first that they are actually not doing their jobs properly before you complain.

Can he come back home. He is clearly not coping.

Support services clearly arent enough, he needs a high level of care if he cannot see that you cannot just throw things on the floor when you are finished, and if he is toileting on the floor then independent living is not suitable. He doesnt know what he needs. He might think that supported housing is something different to what it actually is. Maybe he could be persuaded to trial it with a view that it doesnt have to be forever and that he could go back to a flat in the future.
His mental health issues will be exacerbated by his environment which he cannot manage and neither can his support staff. This is too much support needed for a £300 a month package imo.

I personally think you need him home, or work very closely with getting him to accept that he needs more care, but taking into account the feelings of failure he may have around this.

Ultimately, when you have a disabled child, you do have to accept that they might not be able to live independently, and the state wont take over enough necessarily.

I’m not sure what advice to give OP but I do hope you get the support you and your son needs.

I agree that you shouldn’t be paying for a service you aren’t receiving though. If his carer’s We’re doing their job he definitely should not be living like this

@CtrlU op lease don't blame his careers, they can only do so much. As I have said above they can't force him to tidy up and he may be refusing their help or becoming aggressive to them. I agree he needs help, but it's not their fault. Support workers are just that - support workers. They aren't cleaners they are supporting an adult to do things for himself, and if he doesn't want to do it they can't make him!
I hope he gets the help he needs soon.

Carers not careers, bloody autocorrect

In picture number 2, are those little bags of drugs on the table?

I see nothing that resembles bags of drugs
I can see areas that have been whited out to conceal his identity.

There is a scheme called fuel direct where utility payments can be taken directly from benefits and a small extra amount taken to cover arrears.

Who deals with his benefits claims?

I agree with others about trying to get a guardianship order so you can take control of some things/