Sister with Downs Syndrome becoming aggressive

I meant you need power of attorney for your mother- everyone should have one in place in case of incapacity. You can do it online yourself- costs about £80, which means if your mum had a sudden stroke or got dementia herself then you would have access to your mums finances.

Like pps have said I wouldn’t jump to dementia in a 42 year old. My aunt had Down’s syndrome and lived with us after my grandma (her mum) died so I grew up with her. She developed dementia in her mid 50s and died at 60.

Are there any daycare type centres that she could attend? My aunt went to one during the week - it was almost like school - for adults with a variety of physical and learning disabilities - and she really loved it. A bus would come to collect her, she had friends, they did activities, learned life skills. Sounds like that kind of thing could be a lifeline for her.

Well I can tell you what happened with my family. My sibling had a social worker who visited and I emailed social services regularly to tell them the true situation. Right up til the day mum died I was giving updates. When mum died social services sorted for carers to visit four times a day, but wanted my sibling to stay in the house. The house had not been left to them in the will, luckily, as it would have been incredibly sad and unsafe for them to live alone like that. On top of stroke, epilepsy and an LD 5th also have a tendency to set fires. I badgered social services relentlessly about finding somewhere for my sibling to live and after a couple of weeks they had a very bad fall and ended up in hospital. They stayed in hospital until a place in a lovely home was found. Moved there and have been the happiest I’ve ever seen.

I used to have sleepless nights for decades worrying about this, but with hindsight there was nothing I could have done differently to have changed the outcome. Social services would have moved them years ago, but had neither the will nor the power to do so while both mum and sibling were alive. So do what you can but don’t let the worry take you over. And on no account agree that your sibling lives with you unless this is what you want to happen.

There isn’t a ‘register’ as such - you need to make a safeguarding referral to adult social care for the physical shoving if nothing else. The enquiry will take into account immediate risks as well as your sister’s longer term needs and wishes. Although she has Downs and maybe the onset of dementia, she may have mental capacity to decide on her living and care arrangements , so just don’t expect that adult social care can go marching in and make your sister move or accept care. FYI - unless your mum has DWP appointeeship or power of attorney, she doesn’t have any legal right to make decisions on behalf of your sister

Sorry in advance for long response and q's.

Like others have said this would fall under safeguarding a vulnerable adult.

Your sister needs an assessment under the Care Act. It should be your sister who is asked whether she would like this and if she refuses or your mum refuses access there are ways the local authority can intervene through using the Mental Capacity Act if necessary.

Do you know if your mum is deputy for health and welfare for your sister? It sounds as if she is not acting in your sister's best interests by refusing help or refusing to address the inevitable. It is something we see all the time when working with families in similar situations.

In cases where it is needed they can go to Court to ask for the powers to remove a person to a safe place such as a care home, obviously this is likely to be more distressing so they will need to evidence they have tried or risks would need to be severe enough for action to be taken without attempts first, and they'd need to evidence why they believe your mum isn't acting in your sisters best interests.

Social services would also likely call a professionals meeting / safeguarding meeting to discuss risks/develop a plan with GP / LD team and social care and to ensure agencies are sharing info.

if your sister became very unwell / was putting herself or others at risk the mental health act could be used.

I'd also be seeing if she has been under the care if the LD nursing team, like others have said they can provided support and education to your sister and mum and would work alongside a social worker. As well as helping to get the necessary health checks done for your sister.

It is likely the first thing offered would be a support package in the community, this could be a way to get support going in the home or for your sister to start going out with someone.

As your sister has PIP it is likely she'd need to contribute to the cost of social care. Do you know if your mum has a separate bank account for your sister? Do you know if she is using the money for your sister's needs/wants or keeping it herself or saving it up? Does your mum receive carers allowance?

Another thing would be for a carers assessment to be offered for your mum.

Have you spoken to a charity like Mencap for support/ advice?

There was a recent case where a woman with Downs's Syndrome died as a result of severe neglect, it is a tough read due to the nature of what happened but the serious case review highlights learning points/best practice, and you could mention this if you struggle to get anywhere with the local authority:

www.blackpoolsafeguarding.org.uk/assets/uploads/Adult%20V%20SAR%20Learning%20Brief%20final%20280323.pdf

@Worriedaboutsisterp I don't think you'd necessarily be able to get power of attorney over your sister, as she has probably never had capacity to grant it. You need to be looking at a deputyship. https://www.gov.uk/become-deputy

I'm sorry, I have a younger brother with severe learning disabilities. Thankfully he's not quite sufficient enough to need a deputy, but he does have an appointee for his benefits. It seems that the deputy route is a lot of commitment, but given the responsibilities and power it is understandable that there is oversight.

As well as getting your mum to write a will, you should also persuade her to take out power of attorney for you and your sister, so that if your mum becomes incapacitated , you can access her finances to help care for your DS sister and make decisions for her welfare.

I've known of several sad cases where adult people with LD have had to have emergency placements wherever they could be found when the elderly parent suddenly died /became suddenly incapacitated... It was very distressing for everyone.

A distressing case where One adult son with pretty bad LD was sectioned and led out in handcuffs from the family home where he's lived for 55 years when his mum had a skddent stroke and couldnt care for him.

Hideous.

Would have been so much better had plans been put in place.

I would urgently contact adult services and say what you've said there...

For people lacking capacity for a lot of decisions - any decision must be taken in the 'best interests' of the client.

Clearly a lonely, bored young woman with a very elderly mum, needs stimulation, good diet and a life. It's not good enough just to keep her alive,! She needs a life worth living doesn't she...?

An obvious and major issue here, is that neither of them will most likely have any idea what a future life could 'look like', then the default will be thr status quo...

I'd phone social services and follow it up with a bullet point letter... As factual as possible...

I'd outline what a day looks like for your sister.

Her current health..

How her social needs are (not) being met...

Your mums advancing age and not wanting to think about the pressing issue...

Clearly state NOW that there is no possibility of either sibling caring for her should your mum become incapacitated/die.

Ask for an urgent meeting...

I'd mention phrases like... Best interests, (unethical for state to leave her in this situation!), also query whether this is an adult safeguardinf issue..
Also talk re imminent /likely carer breakdown (your mum)

Good luck... It's a horrid situation..

I know it's out of love but your mum needs someone from the outside to speak to her. Make her see sense.

I hate to say it but it does sound like your sister is being neglected.

Even if she doesn't want to move out, things need to change.

What you must avoid at all costs is her money being controlled by the state. So so random care worker gets to decide what she spends her money on.

Hi op some brilliant advice here especially around diet /living arrangements.
I would strongly urge you to make sure you whatever happens that you and your siblings can retain control over her money.

I'm with you - sorry, it's hard to give advice when you don't know everything that is going on. It sounds like you are very engaged and proactive so definitely keep pushing for those referrals. I hope for your sister's sake you find a solution x

I have seen middle aged people with LD absolutely thrive upon moving to supported living, sometimes after the death of a parent who has controlled and restricted them. A safeguarding referral might be the way to go as the LA will have a duty to follow up.

OP you have my sympathies. I think you have to report the situation to social services and then cope with the fall out. Your mum sounds like she's totally blocked off the idea that anyone could meet your sister's needs other than her. Her attitude is understandable, but is very unkind to your sister, you and your other sibling. I don't think for a minute your mother is doing it because she wants to hurt your disabled sibling, but the fact remains what she is doing is harmful and it has to be addressed. Your mum might be angry and hurt, but so be it. Your sister needs her horizon's widening and to receive proper care.

If you type in your council name and contact adult social care, safeguarding. You should find a phone number for your local authority team.

You can remain anonymous but, it be helpful for the allocated social worker to have your input.

This was my thought too @Worriedaboutsisterp your mother’s treatment of your sister is neglect. Your sister is fully reliant on her care giver who doesn’t appear to be taking very good care of her if she only bathes weekly, hasn’t visited a dentist in what sounds like 30 years, never sees a gp, has poor nutrition and doesn’t have any external social contact. This has now escalated to pushing which is verging on physical abuse on both sides and could so easily escalate.

Based on what you’ve said I would be concerned about your mother taking drastic steps to avoid your sister out living her, desperate people do desperate things. I would urgently be making a safeguarding referral because this sounds like a really unhealthy situation for both of them, especially if your sister is physically capable of hurting your mother and lacks capacity to understand consequences of her actions.