Hi, I am hoping to get some advice for my 27 year old sister please. She has learning disabilities and is selectively mute only talking to family. She lives with my mum who cares for her 24/7, she suffers from ocd, anxiety and paranoia which prevent her from attending day services. Recently she has been using her phone to communicate with people on various websites. Some of these contacts were a sexual nature and some messages she was sending were her trying to seek someone to have sex with. We have discussed with her the dangers of this and she is now aware how serious this is and tells us she will not do this again. My mum informed her LD Nurse so she was aware but my sister was not aware she has told them as she did not want them knowing but Mum felt they should know. During a meeting last week the LD nurse advised mum mum that they considered this as a safeguarding matter and that they were looking at removing my sisters phone through a deprivation of liberties. Mum explained that my sister was now aware of the dangers but the LD nurse said that they could not be sure she would not contact anyone again and so they would go ahead regardless. We are extremely worried for a number of reasons
my mum and myself are the only people My sister will tell her anxieties to, should she be aware that mum has spoken to them about this she will not trust us and who will she have to talk to them.
My sister does not communicate with the outside world at all, her phone is her only way of doing this. She will go on singing apps and sing with people and chat but would never do this in person. So should they take her phone away she will be left with no way to communicate to others except from family.
I obviously understand they want to keep my sister safe but I do not understand how they could think that depriving her of her liberties is the first and best way to do this. I would really appreciate your thoughts on this. Thanks in advance.
Hi. Please email me at crampsimon3@gmail.com I can help you. I have never heard rubbish about safeguarding but it depends on her notes . Anyway I will try to put you in touch with some friends of mine.
The LD nurse must start with an assumption that your sister has capacity unless it has been demonstrated otherwise. This places the duty on the LD to demonstrate that your sister lacks capacity in respect to this decision (or that she does have capacity) and to take proactive steps to improve her ability to make a decision. Only once this work has been completed is it fair to make a decision about capacity.
What the LD nurse must not do is to assume is that your sister lacks capacity simply because she wishes to make an unwise decision. You suggest in your post that you understand this concept clearly (for professionals or others this can be a difficult idea to fully grasp).
It sounds like some kind of supportive work to explore with your sister how she can achieve her expressed needs (to explore a personal or sexual relationship) is needed now and would be a considerably better approach in the longer term rather than a very punitive approach (removing her mobile phone). I would suggest that you request that some kind of supportive work be commenced as soon as possible. This would also have the effect of keeping your sister safe and ensuring that the focus is on her competence to negotiate personal and sexual relationships in a way that maximises her safety and helps her to meet a legitimate aim.
I would suggest that you seek some kind of advocacy with and for your sister, however, I would check first that the advocate has a good understanding of the MCA and DOLS procedures and is willing to communicate with your sister (perhaps using family as an intermediary) to establish what your sister wants.
I would also strongly suggest that you read any information relating to the Making Safeguarding Personal Initiative (MSP). The Local Authority & LD nurse should be aware of it (and I would suggest that you ask them what is happening in your area regarding meeting the outcomes of MSP).
Removing her phone does ultimately ensure that she cannot communicate with men to arrange sexual encounters, however, it would as you suggest appear to have a considerably disproportionate effect on other aspects of her life. If this is being proposed as a response (Best Interest Decision) then you as family (and your sister if she is able) must be involved in making this best interest decision. This decision should not be left to the LD and Local Authority Safeguarding Team alone.
Do remember that the Court of Protection is intended to mediate between parties when they are unable to agree on a course of action (in relation to decisions being made on behalf of individuals who lack capacity to make a specific decision). If you later find that you are in a position that you disagree with a decision that the LD nurse or LA proposes to take, do ask the LA to make a referral to the Court of Protection (alternatively if they are unwilling to do that then you may need to approach a solicitor using the Legal Aid Scheme).
Do come back here if you need further advice. You are most definitely doing the right thing to question this decision and seek that your sisters needs are viewed in a more holistic way.
I hope that you get the outcome that is best for your sister.
I would point you to the mencap website which has some interesting reading on sex and relationships fir people with learning disabilities you might find useful . It is hard to comment on an individual issue but as a rule any action should be the least restrictive There are other measures you could try to restrict access , possibly with her learning which apps are safe and to recognise and know what action to to take if someone or something makes her feel uncomfortable. To be honest I think this is a risk for all young people, not just people with learning Disabilities and we respond by education and monitoring use , not removing all young people’s phones
Thank you so much, your response makes me feel more confident that I am doing the right thing for my sister and you have cited some really useful and poignant information that I will be able to use when speaking to services.