Supported living: My family have an array of learning... - Mencap


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Supported living

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My family have an array of learning disabilities. My sister has Intellectual Development Disability, her son has moderate to severe global learning delay, and her daughter has complex and severe learning disabilities; whilst their only carer up until ten years ago, was my mum, who struggles to manage my sister, let alone help and support the grand-children. For ten years I worked endlessly building healthy family relationships, between the children and their mother, although up until recently, I was not aware of how much my sister hated me, for reminding her of her motherly jobs each day, as the children would not be cared for. I had hoped one day that both children would voluntarily go into supported living. However, the youngest of 18, soon to be 19 in May, was taken one month ago, and has not been allowed contact with any of her family, which must be so traumatic and very emotionally damaging. The son, of now 21, is happy and getting on with life. I cannot understand how Social Services are allowed to remove a member of the family, who is not being physically or verbally abused at home, and have not arranged contact, as they said they would, over four weeks ago now. The family are all suffering, and what is worse, is that most the family members would have agreed to trial supported living, thus visiting the home to check it out together, visiting weekly to ensure the young adult settles in easier, and keep the close bonds and love, that they all share. I was told this week, I am sending too many emails - 3 emails a week chasing up when visits will begin, is only expected, surely; personally, we are all being very calm, despite having been treated so unbelievably poorly by SS. How can SS be allowed to do this. We feel very alone.

14 Replies

Sorry to read this , it really sounds tough . The young adults that are involved with social services can get an advocate to speak up on their behalf and liaise with social services so you won’t have to . They will listen and help make the right decisions. Look up advocates online and find your local one . Good luck

We were told by SS my niece wanted to see her family, over four weeks ago; then we were told an independent advocate had been appointed, and they would arrange the contact, yet over fours weeks now, and no contact, despite having the phone call recorded whereby the care manager tells us she wants to see her family. They are not co-operating with us, and solicitors tell us, that now the young adult is 18, they can make their own decisions, despite only having a mental age of 5-6. This could seriously damage some of the other family members, who are very vulnerable, having learning disabilities, and miss their family member. It is a very sad world, and my heart is totally broken. Thanks for trying to be positive Pixie, but the sad truth is, SS can it seems do as they wish, and treat family members like lepers.

Good morning special needs family. With the family member being 18 the social services department would have asked her if she wanted contact with her family or not and if the social services department think that she Is capable of making up her own mind then theres not much you can do. Except write to your Daughter's social worker and if you don't get any joy consult a solicitor who will be able to get answers for you. But don't leave it to late because this happened a friend of mine but his case is different as he had a stroke and had recently separated from his wife who was his daughters step mother

You can ask the courts to do a judicial review on the case in question and I would advise anyone who has a special needs children or child or young adult to get power of attorney for the person or person's especially when the person is turning 18 years of age. If you are named on the power of attorney as a deputy to the person concerned then the social services department can't over rule your wishes without applying to the court of protection for permission to remove someone from your care. And they have to have a bloody good case for the judge to over rule you. I have a disabled young man who is my son and he turns 20 this month from tomorrow morning that is. And I am going to get a power of attorney for him on both sections of the power of attorney. I wish you well with dealing with the social services department in regards to your problems but please beware that it might be a long drawn out matter if the social services are intend to fight your application in court. Good luck to you all and take good care of yourselves. Peter

Thank you Peter. We have not had any advice as helpful and hopeful as this. The best so far, is a solicitor who suggest they have their own independent advocate contact my niece. I wish you and your family health and peace.

Thank you special needs Family for your reply and your welcome Can I also suggest that you contact a Mental health Solicitor as they are specially trained to deal with Mental health issues and people who have special needs or disabilities problems come under the mental health act as amended . A usual Family solicitor like the one you saw and said seeing as they are 18 they are at age to make their own decisions. Just proves my point that local family solicitors who don't have any mental health experience they would give you the answer you got. I know of a specialist solicitor who is one of the best solicitors who defended mental health rights of families who has special needs members and protected the rights of the person who has special needs or disabilities. The Name of the Solicitor is Kevin Light of Bishop and Light solicitors of Brighton and Hove if you look on there website you will see what they do to help people with mental health problems which special needs come under Good luck I am sure Kevin will be able to help you. Peter

they were not able to assist, as they say my case is not mental health; they did sign-post me, but the other solicitors say they do not have capacity at this time to assist. it is almost six weeks since seeing our family member, social services have not told us why, other than they want to see their mum, brother and nan, that was five weeks ago, and four weeks ago too; last week ss said they were now only going to facilitate a phone call, which is basically not much cop, seeing as my niece does not understand much, and does not converse more than 3-4 word sentences; whilst the sound of hearing her mum, brother and nan will only lead her to cry, whereby they won't be able to hold each other, which is too painful to imagine. the police tell me to raise a complaint against ss, which I have, and they will not give me answers until ss have finishing their safe-guarding report, which we know nothing of. i am mortified ss are allowed to dismiss family like this, whilst cannot possibly care for the emotional and mental damage this must be causing on the young adult. for anyone reading this, they would think she came from a family that abused her or neglected her, when in fact she was loved, well cared for, always out and about - swimming, bowling, library, gym, snooker, cinema, animal parks, allotment, garden, art and craft, disability night club group, holidays and so much more. ss have not contacted us this week, so even this phone call looks like it was just empty promises, as was, us being told Jessica could see her family 5 weeks ago, saying next week, yet almost five weeks after being told this by ss, still nothing. surely ss should realise allowing family contact will help her transition into supported living be easier, than it must be. i truly cannot believe ss are legally allowed to behave this way, and the police and local MP can do nothing.

Hi special needs family I am deeply saddened to read your reply following on from what I said in my last message I sent you the solicitor who said that they can't help you as they don't have the staff to deal with it. I would go back to them and ask them to suggest a solicitor who can help you in this. Mentally Handicapped does come under the Mental health act so I am surprised that kevin said that it doesn't.

I am sorry to say that you are seeing social services are doing because they think that they can get away with it because of the other problems your family have which I add isn't anything anything you or your family have done it just shows how some social services departments work not all SS departments treat the family the way your social services department are treating your family. Like I have said before I would ask for a Judicial review on the social services department handling of your matter. I had problems with a past social worker in East Sussex social services department who said that I was abusing and mistreating my disabled son who has special needs and other medical issues because my son had bruises on his legs and arms. My son Joe has fits and is on medication that causes his blood count to be low so because of that fact when he banged himself or knocked himself he got bruises I can tell you it was a nightmare I was pulling my hair out with frustration and stress but I caught the social worker out. As I recorded a phone conversation which I produced in a social service meeting as she was telling the panel that I had misunderstood what she said that was before I played her phone conversation to the panel of social services department people. The good part is I managed to get my son a new social worker this other one I complained about got move to a office job as I said to them who else is this social worker treating them like she does myself

The reason why I have told you that is to encourage you to carry on fighting them with everything that you can throw at them it might be that you feel that it's a waste of time I can assure you that it isn't. If you have a legal advice centre near you go and ask them for advice and get as much evidence as you can via telephone contact or letters from as and ask the neighbours to do a statement on how you treat the family and the person in question. What ever you do don't back down from fighting for the rights of the person who has been removed from the family. But at this stage of the matter I would gather as much support as possible. Good luck and best wishes to you all


Good evening. I shall do as suggested, and ask Bishop and Light if they could explain why they've said my niece who has severe and complex learning disabilities, is not a mental health area, it was not Kevin who emailed, but an admin staff. I value that you shared some personal information of your own, as well as confirm that some social workers are not honest, MOST people would not believe what is going on for me and my family. I apologise for contacting you, I needed someone to talk with, my nieces nan is so emotional with it all, that it's just not fair to moan about this to her - so thank you for caring, being kind, and giving advice. Best wishes to you and your son.

Special needs Family

May I ask why you are apologising to me? You don't need to if I can help I will your not troubling me at all. It's just that I have been at the end of a social worker who had it out for myself and my son Joe. I have been in the Mental health field as I was a Nurse for over 20 years I did General nursing and psychiatric nursing. Plus if I can help someone then I will. I know what people can be like in Authority and who will take advantage of someone or people who don't know what there rights are in regards to their family members or them selves. It's a very sad world that we live in when it comes to people with emotional and disabilities and mental health issues as well .in the old days our families members who have disabilities on the disabled side like down's syndrome where classed as mentally Handicapped but now in our day's they are classed as special needs which most special needs person's have mental health issues which is why they were put under the mental health act in the recent years and that's why they have health partnerships to deal with the disabilities of special needs people . And since the care in the community act came into force there are more people who don't have any help what so ever. That's why I say we live in a sad world today because people are not used to seeing special needs people around and some thing that they won't be able to lead a normal life at all. I remember what my Nursing tutor said to us all in my group. It does not matter what the person what the person can do or not do nor how they look but we need to remember that the person is still a Human being with feelings like you she said. And that was said to me in the 1970s and I always have remembered that when dealing with a fellow human being. Which has made me a caring person who cares about people no matter what or who they are.even though my son Joe has many disabilities and medical conditions and issues and has a life shorting problem he is still a fairly happy young man and if he sees someone else who is in a wheelchair or is struggling to get about he will ask me to stop walking with his wheelchair or he will stop moving to ask the person if they are ok! He is very caring when he sees someone else who looks I'll. He talks to people on the bus asking them how they are feeling. Joe is hard to understand sometimes but the people fall in love with him goodness knows why because he's a pain in the backside at home lol. But he knows that I would always make sure that he is treated fairly by other people. It might seem that you are fighting a losing battle with your families social worker. If your not happy which I know that your not. You can always write to your area county Hall and put your case to the head of social services manager or Director as they have people there as well who can help you and your family with the trouble you are having with your local SS department. You keep fighting for your families rights . And please don't think that you are bothering me because your not ok!! I want to help people if I can help them. I hope your niece's Nan is well tell her not to worry about what's going on at the moment it will be sorted out one way or another. You could always pay a visit to your local social services department. But take someone else with you from your local advice centre if possible because social workers usually are more open with you if you have someone who knows what your rights are. And they can take notes of what has been said and they usually get the.person to sigh the notes as a true copy of what was discussed at the.meating.

So please feel free to contact me anytime if you need someone to talk to or just to get things of your chest that are worrying you and your family. It.must be very hard for you and your family not knowing what is going on. And you have a right to know. But try and keep your temper in check as they will try and get you. Take good care of yourselves and try not to worry about this Ok. Best wishes to you all. Peter

Hello Peter. Well what can I say, other than thank you for being so helpful and kind. It sounds like Joe is a beautiful person. Life is not fair to some people, this is so true. I am actually empowered by your advice, which I had not thought of, although I did email the head of social services, but will now email again, asking why we are being treated this way. My niece has good mental health, but her learning disabilities are very complex, which not only makes her appear odd, but causes her a lot of frustration because she cannot understand much, and sadly will just often agree with someone if they seem friendly, no matter what they may be asking. Jessica does not have any bruises or injuries, thankfully she doesn't have fits; but her heart must be broken, and that thought and the longing for her, has broken me. Her poor mum has learning disabilities, and is waiting on their every word, but so upset this team are not doing what they said they would; nor telling my sister anything, she feels totally ripped up inside. We have done nothing but co-operate, I did lose my temper with the social worker who was shouting down the phone at me, that she wanted to take my niece out for an hour, and not answer our questions; it made no sense to us, as to why they had been holding meetings at her college to discuss the other male student, who had been sexually assaulting my niece, thus we were not told, nor invited to these meetings. So being kept in the dark and the importance of being present in these meetings, is highly concerning and upsetting as to how they thought they could exclude all family members. Anyway, I am upset again now, so I'll leave it there for now. Tina.

This sounds so tough SpecialNeedsFamily - I'm so sorry to hear of what you're all going through. I don't have any advice other than what has been offered, but I just wanted to send a hug and let you know that you're not alone. Keep in touch and let us know how things go. All the best, Fx

Since writing my message on this page, I received an email from my nieces sw, it says they are going to arrange a phone call... My niece has not been allowed to see her mum or nan for almost five weeks, she needs a hug, not a cold call; but worse still, my niece does not verbalise, thus communicating is part of her complex needs, no doubt as soon as she hears her mum and nan's voice it will send her over the edge, not able to talk due to tears, but the only thing she can really say is I love you, Yes, No, I don't like, I like... it seems so mean, especially as ss are not telling us why they are safe-guarding her, thus she is not hit at home or sworn at by her carer, eats well, exercises, goes out most days, socialises, but has been waiting since November 2019, for a college placement or day centre to be organised, which I was doing in October, when she refused to return to college, owing to a young man sexually assaulting her, and because they were making her learn to read most days, not what we signed her up for. Yet we were told by ss that an EHC plan meeting had to take place first, and so at that meeting 6th December 2019, and after her MCA 9th December, they said they would organise the next placement, and for me to take her to see if she liked it or not. Eight weeks past, they had not organised anything, but they turned up on the 29th January, took her, and told us five hours later, she says she doesn't want to come home. The whole family know this is not true, which is only confirming that it is ss that are making the decision, because they feel it is in her best interest. If I am honest, supported living is the best place, so long as she gets to see her mum and nan every week. I am saddened that we have a system that is allowed to behave like this, thus involving the family, agreeing a trial period of three months for example, with weekly visits from family to help her settle in, is so much more humane that this. I am so very grateful to all those that took the time to read my my post, especially to those who replied. I have taken your advice, and hope for my nieces heart and her families emotions, that a professional in this field, may be able to help, or at least offer good sound advice. To all those going through similar turmoil, I can only say, I am saddened that this goes on, on the scale I am beginning to see. I knew not all sw could be trusted, but this is beyond any nightmare I would have believed. So when I say thank you, I so honestly mean it, as it seems our world is not as caring, kind, fair or just as some of us like to think we have it here in the UK.

Dear Specialneedsfamily, so sorry to hear this awful news. Perhaps consider contacting your local MP ( they hold weekly clinics ) or your local councillor, who have a lot of power in local Authority matters. On two occasions I involved our local councillor and both he managed to resolve successfully for myself and my daughter (whom has a disability ). Wishing you Lots of luck.

Happy for you dear l want the same for my son but l didn't know l have to look for the independent home thanks for sharing

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