Could I please ask for advice. My son is 24 and has Autism and some anxiety issues. Before the Pandemic all was going along fine with Day Centres but then the Lockdown happened. My son was at home and became very clingy wanting me to remain with him all the time and due to my thinking that we were not living a great life I decided that it may be good if my son had independence and I had some breathing space. I had often been asked about supported but I had always said No Thank You. The supported living was connected to the company that had run the Day Centre so my son was happy to move.. I couldn’t see my son for 4 weeks to give him a chance to settle this was extremely hard. After this period of time I was vi siting my so a couple of times a week and he was coming home every other weekend. Sadly not quite a year there my son suffered a physio’s episode which was very frightening for both of us. My sons social worker suggested quite strongly that my son needed specialist care and so my son move to Residential living again we had the 4 week no contact only this time I am only able to see my son for one and a half hours per week. We have been contacted by DOLS but as this is all new to me I didn’t and still don’t understand what to make of all this. My son doesn’t want me to leave him and I don’t want to leave him either. When I see my son he asks me to take him home and he asks for me when I am not there I understand. Can I Thank You for taking the time to read my message and please let me have any thoughts or ideas if this is fair to a young person or parent who have just had a very traumatic time.
Bernadette Butler.
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Newbeach18
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Hi Bernadette I’m sad to read your post as I can feel how upset and how difficult it has been for all of you. I think your son would benefit from an Independent mental capacity advocate check them out on the internet you should be able to find one locally for your son and they can hopefully support you as well. I would highly recommend you apply for deputyships for health and well-being and for property and finance through the government website as going through a solicitor is extremely expensive. A deputyship means in law that you become your sons voice in affect if your son lacks mental capacity. Check it out online this has made the world of difference to myself. I would also recommend you register with the carers association as they can be very helpful to you and the Autism societies. Mencap helpline are very good also at giving advice so always bare that in mind. Unfortunately when your loved one enters the care system things can be good but they can also be not so good you need to know yours and your sons rights. I also had a lot of issues when my son was in a care home and we all went through an extremely difficult time so these are things we learnt along the way. I also paid with my sons money for a consultant social worker and to be honest she was worth her weight in gold so this is another avenue you could consider good luck as this is not an easy road to travel.
A few things to add:* Deputyship can be applied for with out a solicitor and will cost you nothing.
You will need to complete forms and provide evidence.
If you pay for an independent social worker report (HIGHLY RECOMMENDED) they could potentially also provide the evidence in regard to capacity for the Deputyship.
for help with sourcing an independent social worker.
* In the mean time, as there is no court order to stop you visiting your son, you should be able to be visit as often and for as long as you like. I see no reason why you can’t just take him home as and when you want to, though he may find just visits home harder than a permanent move back home. As to the 4 week rule that is simply cruel and violates his human right to contact with family, if necessary consult a solicitor that specialises in human rights and also public law solicitor that has a legal aid contract such as Irwin Mitchell, Bindmans, Scomo, Simpson Millar and Leigh Day, there are others.
* Also, ask to see and read all the records the provider keeps on your son, and keep watch over their care of him. You can report any concerns to Social Care, Safeguarding, and make “Formal Complaints” to the provider on your sons behalf if necessary. If they do not respond appropriately then refer the case to the ombudsman as well as CQC (though don’t expect much in the way of direct help from CQC).
* KEEP RECORDS, perhaps a journal but also actual letters and emails, and write down what is said on telephone calls. Always follow though with an email to confirm what was said and agreed on the telephone. You will find this enormously helpful when you need to advocate for your son, either with the provider, social care, the ombudsman, solicitor, or the independent social worker.
* Note Independent Advocates, are not independent but paid for by the council and therefore, in legal terms, are conflicted. Some will be better than others. Take care, not every title that states “Independent” is Independent. Always check who is paying them, if the funding is paid by the council or the provider then there is a powerful source of conflict of interest.
Hello Feltspar.Thank You so much for your welcome message. I have written down points that you gave and next Friday when I have a meeting to attend I will have this info with me, I always feel I am being ganged up so it will be good to go armed. Thank You.
Hello Feltspar.Thank You for your message. I sadly don't have anyone who is able to go with me on Friday, I wonder because I a one man band this is why they would like to be towards us as they are. I have a good few points I was given to ask them. I just wonder what will take place if I don't receive decent answers.
Go in confident, you are your sons expert. If they continue to ignore you, make a “formal complaint” and keep pursuing it through the different stages, and then send to the ombudsman if it remains unresolved AND get an Independent Social Worker to assess and write their report AND get their help with applying to the COP with a capacity assessment. GOOD LUCK.
My heart goes out to you. I am in court of protection case trying to get my son home after he was taken against our will after being failed by the lhb and chc team in Wales. My son isn’t even being properly cared for.
Hello Dancer74.I am really saddened to read your message. Us parents have such a tiring hard life at times taking care of our children and I am so sorry that you have so much to deal with right now. I hope you have the strength to carry on. Thank You for your message but I wish you all the best.
And I forgot to say, DOLS is all about deprivation of Liberty, so tell them that your son does not want to be at this placement and that your visits are being restricted.
My son sadly had been through such a hard time at his previous placement , one thing being not being fed and going without food for a good few days as the manager at the place had barred my son from having food in his bedroom to try and get him to go downstairs, she couldn't understand the difference between can't and won't my son has anxiety issues. A snowball of events which led in turn to my son having a mental issue where he seemed to be hearing voices. It truly was a scary time. My son didn't understand what was happening to him. My son is now in a different place where all different ailments are taken care of my son has been put on tablets to help with his mental issues.Bernadette.
Hi Bernadette I was upset and to be honest angry reading your post .
You and your son are both obviously very unhappy at the moment and you both have every right to be .
Your sons residential is meant to be his home and therefore you should be able to visit him when ever you choose to and he should be able to come to your home whenever he chooses .
My son who is 30 suffers with periods of psychosis , he still lives at home with me at present .
I strongly believe that the pandemic was part of the reason he became unwell , stress is a big trigger for psychosis especially for people with autism and learning disabilities .
I fought hard to get my son funding for support workers to take him out every day and now he is doing well and enjoying social activities again .
We are looking at supported living for the future but it needs to be the right one with the right support in place .
You don’t have to keep your son at the residential home if he isn’t happy there it’s not a prison .
Say no to DOLS at the moment , once that is in place you will have no say in your sons future care and I honestly believe we as mums know our children best !
Both of the above replies offer good advice ,
Definitely look into what they have recommended .
If you are not happy where your son is and he isn’t either you can bring him home .
You can then get in touch with the mental health of learning disabilities team and get him some support for his anxiety .
Once you have support from them and a good social worker you can move forward with your son and look for a more suitable place for him to live .
Don’t be afraid to be assertive with the relevant agencies , you know your son inside out and have his best interests at heart .
If it doesn’t feel right it usually isn’t .
I wish you both the best of luck and hope things work out for you .
Hello Teachginge64Thank You for your message. I agree with you 100per cent the Pandemic has been a cause of major stress the major suffering it caused. I have received some very good messages and I have made notes. I have a meeting to attend on Friday and I always feel that I am being ganged up on. My fear is very much that I am losing my son. The manager came running when I was going to go with my son into his bedroom on my last visit because she told me I should have asked first. I was with my son to go with him in his bedroom. I do worry very much as my son's social worker is saying Connor is in the right place but what about Connors family not seeing him ,I don't understand. Thank You so much for your message and I wish you and your family all the best
Hi Bernadette, We’re not at this stage it fills me with dread, my son is still at home but I was gobsmacked and deeply saddened to read you weren’t allowed to see your son for 4 weeks, that is truly awful and as someone who grew up in care I can only imagine how that felt for him, I don’t want to make you worse than you already do he must have felt abandoned.
Good luck with sorting this out and sending you lots of hugs.
Hello Inside.Thank You for your message. I desperately tried to get that across to the care home but they refused to budge their ideas. I have cried buckets and haven't got anywhere.
I agree with the other replies that the treatment of your son seems cruel. I think you should decide what you want for your son and fight for it. Knowing what you want us half the battle. Stop saying “no” to support. You and he have a right to a life which can be independent but fulfilling for both of you. One day he will have to cope without you so get on with it. Sorry if this seems harsh but from what I can see people delay in getting the right support in place and goodness knows it takes years even when you know what you want. My son is 24. He has 24/7 care in his own home 10 minutes walk from me. His home is a long term lease in a the property with Golden Lane housing who are providing supported living. At the moment this works for us but it’s still hard as I do miss him terribly at times but I know it is the best for us all including my husband and my sons sibling as well as my son himself. He is happy knowing he is near us and come come to our house whenever he likes. He had only done this once and has been living in this house for over a year now. We can visit him every day if we want to and check on how he is. Definitely get deputyship for your son asap if you don’t have it. Good luck.
Hello Eeviee.Thank You for your message. I am so pleased that your son is close to you and that you are able to visit him as much as you like, that must be a relief I can of course understand that you miss your son. I miss my 24 year old son as well but I am only allowed to spend one and a half hours a week and I can only call in a certain time bracket each day.
Hi Bernadette. I would challenge the visiting times as it seems draconian and unnecessary. You son will only want to stay in this facility if he is happy. Making him unhappy will have the opposite effect. My son would not have accepted this type of treatment and would have absconded by now ! Good luck
Hi Eeviee.Thank You for your message. Yourself and another parent have said the same as myself and that is that the time and days need to be looked at but sadly I keep being told I have to wait.
Sorry but why do you have to wait ? Everything should be done in your sons best interests so if you don’t think this placement is in his best interest or the arrangements aren’t you can challenge it. Are you afraid the placement will fail? If it does and he needs to come home make sure you get some support. Contact a group called supporting together for help. This is a patent support group.
Hi Bernadette When you have your meeting Friday can you take a friend or another person with you ?
This is so you have a witness to what is being said .
You shouldn’t feel you are being bullied , the relevant agencies in your sons care should be supportive to you both .
When my son first had psychosis a psychologist who he had never met before rang on request of a social worker and said to me “your son has autistic regression and needs to go into a residential unit “
I was so angry and asked her how she came to that conclusion seeing as she hadn’t even met my son .
She agreed to meet my son and myself and then said she had made a mistake and that she felt the pandemic had triggered his episodes .
As I said before we are still in the process of finding a supported living placement but it takes time , and you need it to be right for your son .
Does he really need residential ? It could be too restrictive for him ?
They should be putting his best interests at heart and that could be having his own place with good support , somewhere he can be nearer to you as well .
Unfortunately because our children can’t always voice what they want as well as others, their opinions aren’t valued or listened to.
Go into your meeting Friday and without being rude be assertive , say you are very unhappy with not being able to see your son when you or he want to and tell them you will be seeking legal advice as it’s against his human rights .
Question if the placement he is in is the right one and ask how they came to that decision .
Was a best interest meeting held ?
If not why not ?
I know it must be so upsetting and be causing you and your son so much anxiety but you are your sons voice and advocate so please try and get the strength to stand up to them and show you are serious and will not put up with what is happening .
I wish you both all the best , please let me know how your meeting goes .
Hi Teachginge.Thank You for your message. I feel so sorry and sad that you have truly been through the mill with your son. It is a comfort to read your message and I will let you know how I get on and I so agree that the Pandemic has made us family's suffer a lot.
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